I’ve been quiet lately, as I haven’t been feeling great.
For years (11 to be exact) I’ve been having attacks of pain on the upper right hand side of my stomach. It happens a couple of times a year, starting with pain and pressure and fever. The fever goes away after a few hours, but then I’m in pain for days after I eat anything.
The first attack happened when we were on vacation in Las Vegas in 1994 and sent me to the emergency room. It mimics the symptoms of gallstones, so that’s what was assumed but ultrasound showed nothing so I was sent home with pain meds. Local doctor said it was reflux. Three years ago, my gallbladder was tested and found not to be functioning properly so it was removed. But I still had a few of these episodes.
A couple of years ago, I did some Googling and I suspected that the problem was sphincter of Oddi dysfunction.
Sphincter of Oddi dysfunction and papillary stenosis are conditions which occur when this sphincter (opening) mechanism is disturbed. When the hole is too tight, there is a backup of bile and pancreatic juices. This can cause pain (biliary colic). More prolonged obstruction may result in bile leaking back into the blood stream, resulting in abnormalities of the liver function tests, or even yellow jaundice (discoloration of the eyes and skin). Also, blockage to the pancreatic orifice can cause pancreatic pain or attacks of pancreatitis.
I mentioned this to the GI in Stamford and he blew it off. He said my problem was a pulled stomach muscle. The only reliable way to diagnose sphincter of Oddi dysfunction is with ERCP which is an invasive test. And it’s rare…certainly less than 4% of the general population have it from the reading I’ve done.
So fast forward to New Jersey. I’m due for a colonoscopy (joy) and I go through the prep (no joy). Somehow, drinking a gallon of Gatorade as the doc prescribed didn’t sit well with me and it brings on another attack. No fever this time, but pain on the upper right side and nausea. In the consultation with the doctor, I had mentioned my history of these attacks and he suggested doing an endoscopy at the same time as the colonoscopy as long as he was going to have me there to see what was going on. The colonoscopy was fine, but in the endoscopy he said he saw some bile in my stomach and he noted that my ampula papilla, the little hole that the sphincter of Oddi surrounds was “fibrotic” (small and hard).
3 days later and the pain doesn’t go away, so I went in for blood work which showed slightly elevated liver enzymes. Not not joy. Monday night I had a MRCP (a more advanced MRI that looks specifically at what’s going on with the liver, gallbladder & pancreas) and that was normal. So my wonderful doctor suggests sphincter of Oddi dysfunction as a likely cause of my problems. I think he was surprised that I knew exactly what he was talking about. Once I get this thing treated I’m tempted to send all the paperwork back to the doc in Stamford with a big “I TOLD YOU SO” stapled to it.
The way to diagnose and treat sphincter of Oddi dysfunction is through ERCP (Endoscopic Retrograde Cholangiopancreatography). It’s like endoscopy, in that a scope goes down the throat, but they introduce dye and watch how it moves through. Specifically when they’re looking for this condition, they test the pressure of the ampula papilla in something called sphincter of Oddi manometry. If it’s too high, they can cut the sphincter right there and it typically solves the problem. There are 3 types of SOD (explained [here](http://www.ercp.ucla.edu/pages/info/biliary/sphincter-of-Oddi-dysfunction.html)). Because I had abnormal liver functions tests, I’m either Type-I or Type-II which means that the sphincterotomy should do the trick.
The big risk in ERCP is that it can bring on an attack of pancreatitis. My doctor does ERCP, but he doesn’t have experience doing this manometry thing so he wants to refer me to someone who does (which will also give me a chance for a second opinion from someone who is familiar with this condition). Now I’m waiting for that referral. I’ll likely have the procedure done in Philadelphia or Manhattan.
[This page](http://www.joplink.net/prev/200111/04.html) thoroughly explains the problem and the treatment.
Just a little update on my SOD. Still the same, pain and meds. Every time I say something about maybe going to a different Dr. or having more test, my pain management Dr. says I should be thankful I have medicine for my pain and I’m able to work and have a life. Yes, this is true, but no where near the life I use to have before the SOD. I don’t know what to do any more.
I have put my comments on this site about my SOD, if you get a chance read the article…… There is hope for SOD. I know, I had the procedure done, twice. Only because the doctor did not clip the bile duct muscle enough the first time. I would recommend him to anyone. I was surprised…….
I have had what I thought was just stomach problems for about 15 years. I do have gurd, but that wasn’t my whole problem. Last June 2008 I was told by my family doctor I had pancreas cancer. From what the liver blood test results told, a CT and MRI…… This was diagnoised. I live in Michigan and with Blue Care Network insurance, I had to have everything done in Michigan. UGH!
So then the process began, an ERCP had to be done. My gastro doctor could not get into the liver or pancreas, too much swelling, so he figured I had cancer, too. So I was sent to a doctor in Grand Rapids Michigan for an Endoscopy ultrasound. This showed nothing wrong. I was overjoyed……. What a mistake my family doctor did for getting me and my family all upset……. By the way, I did dump him for my family doctor.
Anyway, I still had the pains and found out that the narcotics just made it worse. I was then sent to Ann Arbor University Hospital for what was suppose to be more tests….. I went to see a Dr. Ulmunser, probably misspelled. When I told him the pain problems I was having and the numerous trips to the ER, he said no more tests, he was positive it was the Spincter of Oddi. He told me he was going to fix it. I went into the hospital outpatient last October 2008 and had the procedure done……. It lasted one week…. I thought oh my I am cured….. hee hee NOTTA So I called him up and he told me he would go in again and clip some more of the bile duct muscle. He clipped all but one inch, fearing he might clip an organ so that is all he could do without putting a stent into the bile duct. That would be the next step.
I was given Tramadol and Torodol for pain. Those did not bother me like Morphine, Viacadin, anything with Codiene in it and all the narcotics that were tried.
Here it is a year later and I have only had to take pain meds about 6 times. No ER visits for this problem.
But I am starting to have some problems again so I am seeing my gastro doctor this week. He is the one that thought I had SOD. He changed his mind about cancer after all the tests were done, thank God for him…….Hopefully it is not the SOD again.
I hate the University of Michigan, but it is probably just my insurance. My gastro doctor wanted me to go to the University in Indiana but I couldn’t because someone could fix my problems here in Michigan. HMO insurance is BAD. But I will have it until I go on Medicare and I can have another supplement insurance then.
But there is hope out there for SOD. Just keep trying.
By the way, I think my liver enyzmes were elevated from taking Vytorin. Thank goodness for that or they would have never did any tests at all and I would have been still been suffering. I did go off all chlorestrial meds, but I wish I had the nerve to start taking them again, I need something for chlorestrial, it will be my heart next.
Just look up some good doctors that deal with SOD. There are about 5 good places to go if you have the right insurance. Good Luck…… If you do email me, put SOD in the subject please…..
Thanks for your story Janice. It’s great to here that ERCP can work so well – but unfortunate it only worked for a year. You’ve also helped me to decide that a trial of tramadol may be worth the risk of a flare up.
I’ve seen so many patients given a dire diagnosis only to find out things are OK.
I was recently diagnosed with pulmonary fibrosis and asbestoses (possibly following asbestos exposure in dentistry) from a CT scan I had for the abdominal pain.
I went to the pulmonary specialist and he said it’s mild scarring only – lots of people get it and it’s not fibrosis or asbestoses at all. A week later I had a patient get a thoracic CT scan – on the report by the same Doc was the same thing – mild scarring.
In these days of litigation docs need to report every possible minor thing to avoid lawsuits.
If you have GERD I’d be real careful with torodol – it’s a powerful NSAID that can really do a number on your stomach. You’d probably be better of with the newer cox 11 inhibitors like celebrex, Viox, bextra but many of these have been pulled from the market in the USA due to lawsuits.
The risk of cardiac problems is likely no higher than the older NSAIDs like ibprophen but a the liars found a way to a fast buck so now those with stomach ulcers and GERD have no reasonably safe medication.
I was going back and came across your post after I had replied to your later one. What a nightmare! I can’t believe they said you had pancreatic cancer. One would hope that all possible diagnostic tests are done before giving someone a diagnosis like of cancer. Thank Goodness it isn’t that. SOD is rough, but can be managed. I hope you can get to Indiana when you go on the other insurance. I believe the dr there who is well experienced in this disease is Dr. Lehman. I’ve seen a number of people refer to him. It seems like those who see him really like him. How long until you could get there?
Morning everyone, I hope everyone had a some what tolerable weekend. Mine was normal (well normal for US) I went for my pre op physical Friday, and I’m counting down until Thursday. I just hope all the tests they do give me some kind of answer, resolution or something… I should ask Sarah or Carrie to fax me a copy of the note Dr.Freeman sent my regular doctor, because besides the endoscopic ultrasound and the blood tests he said another name of a test and I can’t remember what it was, and he even said he has never heard of it. I am usually looking up everything under the sun on the web, so I want to research that too. If I find out I will share the information. I wish everyone a pain free day, Michele/MN
Good luck tomorrow!! I hope it goes well and that you get some answers. You are getting EUS as well as pancreatic function test, right? Please post when you can and tell us how things went.
Michele A, Thank you!!, Yes I am having the EUS and function tests, I got pushed back an hour, but that is ok, I am very anxious to find something out. The pain has been absolutely horrible the last few days. I will post as soon as possible. Thank you again for the support, I hope everyone is having a tolerable day. Michele/MN
Of course! We Micheles with one L and SOD symptoms have to stick together, lol!! I am sorry that the past few days have been so bad – this may reveal how warped my thinking has become about this stuff but in a way maybe it is good because if you are having attacks there is better chance of “catching” what is wrong tomorrow? I hope that is more than wishful thinking. Feel good and again, good luck!
I know your tests are today. I just wanted to let you know that I’m thinking of you and hoping they go well for you. I’m praying for some answers for you. I agree with Michele A. If you’re having a bad flareup, I’ve been told the odds of discovery are increased. I’m also hoping that you didn’t encounter any bad road conditions with this lovely rain
& snow mix that we’re having! I think you were supposed to get more snow up north than we did in the Cities. I’m anxious to hear how it all turns out. Take care and let us know when you’re up to posting again.
Oh I hope the weather cooperated for Michele/MN’s trip and tests! This weather is nuts – we’re already having Noreaster here. Just what we need.
Kris I saw your other response to me but there was no option to reply. How are you doing this week?
I posted a question last week to the general group wondering if anyone got an abnormal finding on endoscopy with fluid in stomach – did not get any feedback so maybe I am the pioneer. Wonderful, right?! I am going for more tests to see if we can peg an underlying cause. My doctor initially suspected SOD but as of now is sort of off that – I don’t think she has ruled it out completely but is going for/hoping for something with an easier fix. Wouldn’t that be something?
Hope you have a good day. Looking forward to hearing from Michele/MN!
I found some clinical trials going on in the states. I am waiting for my info in the mail for the trial at UAB in Birmingham. I will keep you posted on if I participate and what they are doing. Here are some other trials for SOD, http://clinicaltrials.gov/ct2/show/NCT00688662.
I had posted a comment on here back in February regarding my problems. I had my gallbladder removed in July 2008 and within weeks was back in the hospital with severe pain(comparable to gall bladder attacks) and my liver enzymes were VERY elevated (in the 400’s) so I was referred to a GI doctor who saw me and told me it sounds like SOD-gave me information on it and referred me to a Dr. at University of Indiana. I tried different pill’s to try and ‘relax’ the muscles of the bile and pancreatic duct but they were not successful. They did help at times I wasn’t always feeling so ‘tight’ in the upper right side, but I was still having pain attacks-very very severe ones that would STOP me in my tracks. These usually happened in the mornings. So I did get back in with my doctor at IU and he scheduled the ERCP w/ the mamomentry in April of this year. I was really nervous, but at this point my life was misreable, I have 4 kids, husband, house, full time job to try and keep up on and my pain was keeping me from everything.
I had the procedure done and he said my pressure was high in my pancreatic duct so he cut that muscle and put a temporary stent in place. He told me it should exit the body itself within 2 weeks. A couple days later my pain was unbearable so I went back to the hospital to find I had pancreatitis. I ended up being in the hospital a little over a week and did take more time to recover from that. Within about a month after my procedure I was feeling pretty good. Still very anxious in the mornings anticipating or fearing that I would have a pain attack..it has taken time to ‘teach’ my body that it’s ok I am all better now. And my quality of life has very much improved and I don’t fear my pain anymore. I do have issues with some foods now..which may be from the gallbladder surgery. But, red meats, cheese, chocolate, caffeine, onions really seem to bother me. Cause nausea, bloating and just plain uncomforatable in my belly for a day or two. I just watch what I eat now and can control it.
From my experience I am SO happy I had the ERCP done..in my eyes it was worth the pancreatitis and being down for a couple of weeks to live pain free for 5 months now and counting…..
I am no medical expert but wonder if you’ve ever tried digestive aids. It sounds like they could help with the foods that give you trouble. I wonder if the problem stems from the GB removal. I was told before my surgery that there could be digestive problems after and I think – though not 100% sure – that digestive aids help. I don’t know if they meant prescription but in the past (way before the issues that landed me on this site!) I have used over the counter kinds with some success. Those were natural – I think I got them at a GNC or a place like that. Just a thought. They even make them without any animal byproducts for vegetarians! (I am not but the regular ones had a weird smell that turned me off completely!) I hope that you are otherwise pain-free and I am very happy to hear your success story!
Hi guys…just wanted to say that I’m sorry you’re having trouble with the commenting system here. Just a friendly reminder that there are now over 1000 comments on this blog entry. Blog comments were never meant to replace typical forum conversation. I am happy to continue to host this discussion, but please understand that there isn’t a lot more I can do to make the flow of comments go smoothly. It is what it is. Thanks.
Judi, thanks so much for continuing to host this. This is by far the best resource I have found on the subject, and it makes such a difference to be to be ablt to connect with people having similar issues. How are you doing with the SOD?? With all of the comments I never was able to find you or figure out if you ultimately got better – certainly hope you did!
Thanks, Michele. That is so sweet of you to ask. Compared to most of you, I’m doing really well. On a scale of 1 to 10, my pain averages a 1-2 after nearly every meal, and depending on what I ate may go as high as 6. So enough that it bothers me, but not bad enough that I feel I have to go to the ER. I’m just not a good candidate for the ERCP/sphincterotomy since I’m definitely Type III and can’t risk ending up with worse problems.
Of course, any pain is not good but I know from reading all these comments as they come in that I don’t have a lot of options. I just have to live with it, which I do. I don’t remember what it feels like not to have at least a constant ache just under my right breast. It’s just always there.
I’m very careful to avoid abrupt changes in my diet or medications that say “may cause stomach upset” as that seems to be my trigger. So I can eat anything I want, really, I just have to do it consistently. If I eat too early, too late or have something I’ve never had before then I’m asking for trouble even if it’s something that doesn’t have a smidge of fat. Was fun explaining to folks the reason why I can’t fast at Yom Kippur…”I must eat on schedule or the place where my gallbladder used to be explodes.”
I promised my husband that if I get another full-blown attack (fever, headache, excruciating pain, vomitting…pretty much classic pancreatitis-like symptoms) I would go to the ER (since I have no one local I can see who knows a thing about SOD). So far, so good.
I really was hoping to hear that you were all better, but as these things go I guess you are reporting good news. I have a feeling I ultimately will be in the same place as you. (I did fast this year and probably should not have, but I have far less experience at this fun stuff … I did listen to my husband and had some sips of water here and there to keep it tolerable – I know technically it means I broke fast but what can you do!)
It is so upsetting that there is no safe diagnostic/treatment process for this. Thank goodness for your blog – I don’t think I ever would have fully appreciated how complicated this is (or understood a lot of it!) without all of the helpful information here. Maybe I am too cynical but I can’t help but wonder if there would be more resources/better options devoted to this if it predominantly hit men (and men under 50, as I think it’s women under 50 who are prime candidates).
I really hope things stay stable with you and no ER trips needed!!
You’re not cynical at all, Michele! Dr. Freeman told me last month that the reason there isn’t alot of research on this disease is because it is primarily a woman’s disease. He said it isn’t fair, but it’s a fact. He is currently involved in a 5 year research program along with 5 other University hospitals. He said he’s doing everything to educate other healthcare profressionals. We need more like him!
I just saw your reply to me after I replied to you! There was no option to reply there, so here I am again. I haven’t heard of anyone having abnormal fluid in the stomach during an endoscopy. Maybe you are the pioneer. Ugh is right. I’m having a pretty good week with SOD, but I’ve got the flu and have been home from work for 4 days. My fever finally broke this afternoon. I’m exactly like Judy says. Never without at least a dull ache under my right rib cage and varying degrees of pain after eating. There is no logic to this disease. It has a mind of it’s own. I can eat something one day with nor problem, eat the same thing the next and it causes more pain. So, I just eat what I want and deal with it. I hope you get some answers soon. That limbo phase of not knowing for sure is so hard to deal with. It’s scary! Dr. Freeman finally confirmed SOD last month. It has been a huge relief for me just to have say the word and know exactly what I’m dealing with. I’m looking forward to hearing from Michele here in MN, too. I’m praying all went well for her and that they didn’t run into snow on the way down to the Cities. They said this am on the news that it’s the coldest first 2 weeks of Oct. in MN history. I can hardly wait for January! I know you guys are getting it back East, too. Let me know how you’re doing!
Hi Kris & Michelle….I also had fluid in my stomach at the time of my endoscopy…even though it had been over 12 hrs with nothing….dr said it was bile….he didn’t sound like it was a suprise though! Said I had chronic gastritis….even though I take nexium every day….Does anyone one know why SOD makes you so nauseous?? I can’t stand it! and right now my Zofran hasn’t been working either….atleast when you’re pregnant you know there is an end in sight…..and a cute baby!!
Kris – Thanks for your replies. I guess it’s good to know that I am not cynical, but that I am right is not especially good! Ugh. Sorry about the flu – hope you are feeling better. It sounds like I am like both Judi and you (kind of felt like I was reading my own story), but I think I have a ways to go to get an answer. I am doing about the same as usual, and going for yet another test to try to figure out what is going on. I think I still am in the rule everything else out phase, which is getting pretty tedious already, but based on the stories here so far it is nothing! How long did it take for you to get the SOD diagnosis? Did he classify it by type? How did you finally get diagnosed?
Laura, thanks for your input too. I get the sense that gastritis is the fall back for a lot of doctors. The sense I got was that the fluid buildup was pretty abnormal and they are not sure why it is there yet. Do you also have a diagnosis of SOD? I am by no means an expert, but I have to think that if you have SOD it explains a lot of things going wrong. I don’t know the medical/clinical answer for the nausea, but I would guess it has something to do with back up of bile – if there are fluids building up where they are not supposed to be, I guess it gets things churning. I have not been diagnosed with SOD but that is one of my biggest complaints and to me it can be worse than the pain. That said, I am lucky that thus far at least my worst bouts of pain are relatively brief (basically, most times by the time I wonder if I should call doctor or go to ER, it has subsided enough for me not to have to do that).
Michele/MN – hope you are doing ok – post when you can and let us know how you are!
Hi Michele A….yes, I was diagnosed with SOD I a month ago….I’m having the ERCP next week….my bile duct is dialated 12mm and supposedly there is a stone stuck in it! All this nonsense started back 4th of july weekend….I ate ribs!!…I had my gallbladder out 6 yrs ago and never had a problem….I had a month of horrible pain…the kind you want to shot yourself…I was admitted to the hosp initially and told I had a kidney infection…..asked for labs….finally got them, and all normal….dr wouldn’t even listen to me about it was “right where my gallbladder use to be” plus I had nonstop belching! I said the pain was gone after 2 days just to get out of there! 2 more ER visits, pulmonary Dr( I have asthma), endo (hypothyrd), and cariologist….He FINALLY listened….told him I was in the middle of a medical fiasco….he said sphincter of oddi!! It took another 2 wks to get to gastro. After endoscopy & MRCP….I was officially given this stinkin SOD.I diagnosis…I’m used to eating whatever…so I’m frustrated!! The pain I have is annoying but not disabling as it was for that month of July….the nausea and bloating, no matter what I eat or don’t eat is the problem….The regular gastro has now sent me to a specilist in Boston. Not many drs have even heard of this….when I was in the ER the third time, I asked the dr about it….she said your gallbladder has been gone for 6 yrs! you can’t have a problem!! Well, glad to talk to you, I’m just trying to understand this condition….take care!
This turned out to be a 3 year saga! I started out having occasional nagging pain under my right rib cage in the summer of ‘06. I finally told my PCP dr about it when I went in for a pre-op for spinal fusion surgery in Feb. of ‘07. He insisted that I have another colonoscopy as soon as I recovered from the surgery because there is a strong history of colon cancer in my family. (I had had a normal one 2 years prior). I had it done in March of ‘07. It took the dr. an hour and a half to do it because I had so many abdominal adhesions. He said it was the hardest one he’d done in his career and he’d done thousands. HE said to go to the ER if I ever had severe abdominal pain because I was at high risk for bowel obstruction. I went along with the usual nagging pain until one day in Oct. of ‘07. I had a horrible attack after eating meatloaf at a restaraurant. Off I go to the ER for the first of many visits that everything shows up normal. My PCP dr referred me to a colon surgeon, who ordered a bunch more tests. He tells me one day that the only thing that can be done is to remove my entire colon!He offered no explanation of why, only that this is the only thing that will fix the problem. Off I go to another colon surgeon who says not only would this be a mistake, but that it would be dangerous. He orders a bunch more tests, can’t find anything, gets frustrated and says to go to a pain management clinic. In Aug. of ‘08, I end up back in the ER. This time I went to the ER where the dr. who did the colonoscopy practices out of because I knew he’d at least understand the adhesions. The ER dr called him and he remembered me even though he hadn’t seen me for a year and a half due to the difficulty of the colonsocopy. He had them admit me. More tests, all normal. He then agreed to take me as a patient. He ran all kinds of other tests as an outpatient over the next couple of months. Meanwhile, I’m having more frequent attacks with a few more ER visits. As it turns out, he used to work with Dr. Freeman. He finally referred me to him in Jan. of this year. I hads an EUS done in Jan. That showed that I have pancreas divisum. Dr. Freeman wanted me to have surgery for the adhesions before he attempted an ERCP since my enzymes were never elevated and there was no evidence of pancreatic damage. In March, I had surgery to have the adhesions out. They also discovered a large ovarian cyst on my right ovary. That was also removed. However, they needed to take the ovary, but couldn’t without written consent, so surgery is again scheduled for May. I was in the ER twice in April for pain. Dr. Freeman recommended having my gall bladder removed during the May surgery in the hopes that would stop the attacks even though there was no evidence of gall bladder disease because that was sometimes successful. I had the surgery done (and the adhesions were back already, so they removed them again) I was back in the ER in June. I was admitted again. I had voluntarily gone off my pain meds because I thought I was done with all of this. The hospital docs actually admonished me for doing this because they said I had 2 conditions that were extremely painful and that I couldn’t be off pain meds. I had an MRCP with secretin done in the hospital, which showed a dilated common bile duct. Dr. Freeman then talked about SOD. He wouldn’t do the ERCP in the hospital because I was already at heightened pain levels. The ERCP was done on July 2nd. He found “extremely high pressure” in my common bile duct, so he cut it. Unfortunately, it didn’t help at all. I was back in the ER in August. I am fortunate that they understand my conditions and they take care of me very well. When I saw Dr. Freeman in Sept., he said it’s SOD and I should have asked him if it’s I or III, but I didn’t. He said he won’t cut my common bile duct. He also said he won’t cut my pancreatic ducts at this point without evidence of chronic pancreatitis because he feels it could make me worse rather than better. It was then he referred me tothe Palliative Care Center for pain management.
I should say that since the gall bladder surgery, the pain has been 24/7 vs. more episodic as it was before. Dr. Freeman said that can happen if one has SOD issues. I told him that I wish we’d left it in, but, as he said, it was the first step he had to try. I don’t blame him.
I am doing so much better now that I am with Dr. Carter at the Palliative Care Center. He really gets it. I take 50 mgs of Lyrica 3 times a day. I also wear a Flector patch (it’s an NSAID medication) and I also take 10 mgs of Oxycodone every 3-4 hours in addition to taking Viokase 16 pancreatic enzymes every time I eat. I find that I don’t have to take the Oxycodone in the evening or during the night, so it’s about half of what the prescription is written for.
I don’t understand the nausea part, either. Strangely, I’ve noticed that now that my pain is under control, I have far less nausea. I was wondering about this the other day and thinking maybe the nausea comes from being in so much pain?
Sorry for the long post! As you’ve learned, the journey to this diagnosis is a long one. It helped me along the way to read and learn about how others got there, so I thought I’d share the story.
Also, for anyone having an ERCP, it’s a very delicate procedure that can have complications. It’s vital that you have it done by someone well practiced at it. The doctor who referred me to Dr. Freeman mentioned sending me to him for that reason. I asked him if he could do it and he said no. He said he used to do them when he worked with Dr. Freeman, but he hadn’t done them in 6 years. It was he who told me of the importance of having it done by a doctor who specializes in them.
I hope you get some answers soon. Please keep in touch and let me know how you’re doing along with any updates you have. I wish you the best!
Kris,
I have an appointment with a pain management specialist on Nov. 20th and I will be curious to see what he has to say. My GI dr has been giving me Percocet and now after 3 years on it I am up to the 10/325 mg strength which the same as your oxycodone 10 mgs just without the tylenol. I find that I have to take it every 3 to 4 hours also but my dr said that I should only be taking it every 6 hours…I bet he has never had this pain! I am wondering if the pancreatic enzyme would help me at all. I also wanted to say that I have had my CBD cut three times and after the first one I was pain free for 2 years..then cut the second time and again pain free for 2 years..then cut again and two stents put in and I have had pain ever since. I ended up in the ER 2 days later in so much pain and my dr had left town the day after he put in the stents for a week so no getting ahold of him! When he got back he said “Yeah I figured you would have some pain because you were closed down pretty tight”. Thanks for telling me what to expect! I wish I could fly to see Dr. Freeman..he sounds like a really great Dr. I am hoping to get some answers on Tuesday. I hope everyone is doing as well as you can with this crazy disease.
I wish you could fly to see Dr. Freeman, too. He does take out of town patients, but I know that insurance and finances
can prohibit traveling to see him. Where do you live? I would be more than happy to email him and ask him for a recommendation to a dr in your area. He is very good about answering emails, which in itself is very impressive to me. I was told to let him know of my last ER visit in Aug., which was a Sat. night. I emailed him on Sunday and he answered in 2 hours! When was your last ERCP done when the stents were put it? Do you know if they came out? Dr. Freeman said they are supposed to pass through your system on your own within a week, otherwise he goes in and removes them. I had an X-Ray one week after the ERCP to confirm that the stent had passed. I’m sorry, but your GI dr. sounds like a jerk…leaving town without telling you what to expect based on his observations! Are you still seeing him? Is that who your appointment is with on Tuesday?
As for the pain meds, Dr. Freeman was kind enough to prescribe Percocet to me until I could get to the Palliative Care Center. He prescribed 5/325, one every 6 hours. I emailed him and told him that I was having to take at least 1 every 3-4 hours and sometimes 2 because of the pain levels. I didn’t want to take more without being honest about it. He was OK with it. When I first saw Dr. Carter at the Palliative Care Center, he told me that my prescription was for what someone who came into the ER with a sprained ankle would be given and wasn’t nearly effective for someone with this condition. I literally broke into tears with relief to finally have someone who understood. I started out by trying to take between 4 and 6 a day. I was finding that I was still having quite a bit of pain. I decided to stop trying to be a martyr and now take 2 every 3-4 hours as the rx is written for. I can keep the pain to about a 2 all day by doing this. I had tried taking the enzymes for about a month in Aug., and they didn’t seem to help, so I quit. I’ve gone back to taking them at the advise of an RN who runs another support group on Yahoo. She recommends taking them for those with SOD even if you don’t have chronic pancreatitis because they help your pancreas to rest, therfore potentially helping to avoid long term pancreatic damage. That made sense to me, so I’ve been back on them for about a month. Adding them seems to have helped decrease the pain even more. I b elieve the combination of medications has done the trick.
When I saw Dr. Freeman at my appt after being at the Palliative Care Center, I told him what Dr. Carter had said about the amount of meds I’d been on. I told me that I was telling him that not to be judgemental of him. but to let him know in case he had other patients in the same situation. He wasn’t upset at all and said “that’s why I sent you to him because this is my specialty, not pain management.”
I really hope you have a positive experience with the pain management clinic. Is there any affiliation with that clinic and your GI dr? In my case, with both of these drs being at the U of M and communicating with each other, I think it helps.
I read your other post about how much pain you’re in. I feel so bad that you’re in that place. I’ve been there on so many occasions and it’s an awful place to be in. Like you said, this is a crazy disease. It’s so dificult to explain to family and friends. I’ve heard it referred to somewhere as “The Invisible Disease” because you look OK, but we all know we’re not.
I’m doing so much better now that the pain is under control and being with drs. who understand and help. This disease affects you physically, mentally, emotionally and financially as we work to manage living with it.
Please know that my thoughts and prayers are with you. If there is anything I can do to help, please let me know. If you’d like to email me privately, please let me know that, too. I’m not sure if our email addresses are available on this blog or not. If you’re comfortable sharing yours with me, I will definitely reply.
I hope your day goes ok today. Let me know how you’re doing!
Kris,
First of all..thanks so much for your reply. You have helped me more than you know! My stents were put in Jan of 2007 and they were left in for 3 very painful months. He had to go back in and take them out in April.
My appointment on Tuesday is with a different dr at the Virginia Mason Clinic in Seattle, Wa. He is the same dr that did my second ERCP because he had the machinery to measure the pressures and he said they were high in the CBD so he cut it then. I think I am going to find a different GI doc then the one I have had after my last visit with him. He told me I was 1 of 3 patients that he treats with this disease and I just don’t think he knows what to do with me now. He says I am a compicated case! He changed me from Gabapentin to Lyrica at my last visit but before he did that he said that he was going to call one of his other patients that he treats that he just put on Lyrica to see if it was working for her and literally got up and left the room to call her! I couldn’t believe it! She was in the shower so he couldn’t talk to her! After that I went to my regular dr and she said the Lyrica dose is very puny (her words) and she increased me to 75mg three times a day and I asked to be referred back to the dr at Virginia Mason in Seattle. I would love it if you could ask Dr. Freeman to recommend a dr here in Seattle, Washington if he would. That would be so great! Also Kris if you could email me I would love to ask you a couple of more questions if you don’t mind. My email address is kar@wavecable.com. Thanks so much for listening..sometimes it helps so much just to vent. I do love to hear how everyone on here is doing. Please take care of yourselves and have a great day!
Hi,
Just wondering if everyone that has SOD, has had their gall bladder removed? I did not have the surgery where they make the long cut on the abdomen. Just the 3 slits and that was it. I am wondering if this procedure started the whole thing? I am 62 yrs. old. I had pain ever since having my gall bladder out about 12 yrs. ago, at the age of 50 and was diagnoised last year with SOD. I had that procedure done last year at the University of Michigan, where they slit the bile duct muscle. Well, it lasted 10 months, almost pain free, had about 3 bouts of pain but not enough to go to ER. Believe me I felt like a new person after the procedure… I had lost 25 pounds and aged at least 10 years. And I was put on Reglan last January. And pain med Tramadol. I cannot take any narcotics for it makes the SOD worse, if that is possible. Tried several narcotics, just cannot take them. Now I am not sure if the Reglan really helped or not, guess it was the procedure because the pain is back again, but not as bad. I’m sure it will get worse, in time. And this time I am having headaches with the pain, which I did not have before. But I went to my gastro doctor yesterday and he is sending me back to the University of Michigan, in Ann Arbor Michigan. He believes the SOD is back. UGH…… I wish someone would come up with a positive cure for this problem. Not a temporary cure. Am waiting for the call from the University for an appointment. Sure hope it is soon.
I just put up a long post in response to Michele A. and Laura that you might want to read. I had my gall bladder out in May of this year and have had constant vs. episodic pain ever since. I had an ERCP with the cut in July, but it didn’t help me. I have found that I also get headaches when the pain gets really bad. I’m not sure why that is. I am able to take narcotic pain medication and it helps me alot. Everyone is different with this disease. The key is to find what works. I have an rx for Tigan for nausea. However, I’ve found that since my pain is under control that I have far less nausea. Unfotunately, I think we are a long way from finding a cure for this awful disease. I hope you get into your appointment soon and get a plan from your doctor. Please stay in touch and let us know how you’re doing.
Before I had my gall bladder out I had more control over the pain by not eating fatty foods. I did not have gallstones. I had both sphincters cut in separate ERCP’s in March. I did not get pain relief from either. I did get rid of the nausea after getting the bile duct sphincter cut, but now the nausea is back. For me the nausea and pain due not seem to come at the same time. I tried an endoscopic celiac block a week ago Wed. and I do not think it did anything. When I eat food with any fat in it. I get a horrible odor. Some days I do not feel like chasing my 13 month around and taking my 8 year to activities or dragging myself to work.
I can’t imagine how hard it would be do keep up the energy to care for young children with these disease. My 2 young grandsons spend alot of time with me. I love it, but it does get tough some days. Yup, the fatty foods do seem to set things off. I’m working on watching that. I’m sorry you didn’t get relief from the ERCP, either. Dr. Freeman advised me not to haved the celiac block, so I’m going to avoid that. Are they saying you should follow it up with another?
He said that his experience is that it aggravates the pain associated with SOD. He told me that this is the first thing pain mangement doctors typically want to try and under no circumstances to let them do it for that reason.
He said the same thing to me – verbatim. ( This will be a short post Kris but
wanted to let you know that I should have time later this evening or tomorrow night to post again btw, going to Chat?
It’s unfortunate the celiac block didn’t work for you. Since this ganglion contains all the afferent noxious pain fibers from the GB, pancreas and viscera it’s hard to understand why it fails.
Yet in benign conditions it’s only 40% effective – cancer it’s about 80%. So it seems there are some benign conditions where the pain arises from some other place.
With me the pain is bearable for about 5 days, then it builds up and the nausea kicks in and becomes unbearable. I’d call getting rid of the nausea a major success in my case. It’s a shame the pain seems to return in so many of the successful procedures reported here. I’m wondering if some docs are doing incomplete cut? If you watch the surgery in the video with Dr Freeman he just about destroys the entire papilla. It’s hard to see it ever coming back from that.
In regard to your comment that Dr. Freeman’s video shows him practically destroying the entire papilla, he IS able to do this because he is as good at
this procedure as he and others say. For example, he told me that he made a
very large cut to my cbd (common bile duct) and amazingly I have 2 local
doctors who were in amazement at how large of a cut he actually did.
Now there are some who will say that it is not good to make such a large cut
because the relief may not last and will cause more adhesions but anything
I have read is that as long as the doctor performing the cut knows exactly what
he is doing and he does them well, then the result is almost always good, at
least for a period of time.
It’s great to have this website to be able to hear so many stories.
For me the nausea is the primary problem I can deal with the pain, but the deep dull visceral nausea is unbearable.
I think some possible conclusions can be made form all the stories here.
Firstly that the diagnosis of SOD is uncertain. My guess would be in the cases that did not respond to the ERCP, that it wasn’t SOD, or SOD wasn’t the primary problem. So clearly there are other conditions that mimic this disorder.
Secondly if you can tolerate narcotics it may not be SOD.
Fourthly that having you GB outdoes tend to instigate the problem.
I’m seeing a doc for a consult and possible ERCP. Being a male with an intact GB and type 111 I’m beginning to wonder if I have SOD at all or if it’s something else.
Well, you’re on the same track with what Dr. Freeman told me. He said there are a number of people in the medical community that believe SOD doesn’t exist. He said he is trying to educate as many as possible that it does. Like he told me in my case, “you can’t imagine high pressures in the common bile duct, as you had,” yet cutting it didn’t help. He said he sees about 200 patients a year, primarily women, who have this and respond the same way I do. It does make you wonder. I swear I have had every test known to modern medicine and the only issues that have shown up are the high CBD pressures and adhesions. Adhesions surgery didn’t help, nor did the ERCP with cutting the CBD.
You are in the minority being a male with this condition, as he told me that this is primarily a women’s disease, thus the limited research.
It is truly a mystery diasease. I sometimes wonder why I didn’t have it years ago, in spite of having pancreas divisum. I was under significant stress at work when it all began. Was that the trigger?? I really wonder….
Hello everyone!
I haven’t been on here lately as I have been feeling pretty bad lately. I am having pain every day and just not feeling well. I am going to the specialist on Tuesday and hopefully I can get some answers. My Dr. has referred me to a pain management specialist but I can’t get into see him until the 20th of November. I am in so much pain most of the time. I just cut my hours down at work. I told them I just couldn’t do it 5 days a week anymore. Plus I need to have one weekday off a week to go to the dr and other errands. My dr also increased my Lyrica to 75mg three times daily..maybe that will help also. I just can’t help but get depressed sometimes due to the constant pain. Plus knowing there is no cure for this and no light at the end of the tunnel is very depressing for me.
I have only posted on here a couple of times but I read the post on here everyday. All of you have my exact story.
I started having URQ pain in June 08. It started out as a dull ache. I went to my family doc and he prescribed Nexium and I took that before I would eat dinner and things seemed to be better. Then in Sept 08, I had my first full blown SOD attack. I ended up in the ER but all of the test came back normal. The shot me full of pain med and sent me home. A couple of days later I was back in the ER with the same pain. I had an ultrasound and HIDA Scan on my gallbladder which were normal but I was still having the attacks. I decided to go ahead and have my gallbladder removed in Oct. 08. It helped alittle, I still had attacks but the frequency of the really bad ones had diminished.
After a plethora of other tests, I was referred to Indiana University Medical Center to see Dr. Stuart Sherman. He did an EUS and a MRCP, of course both of those came back normal but I was still having pain everyday. Dr. Sherman didn’t want to do the ERCP until we tried all sorts of medications and other tests and we were at the last resort. Well, I got to the last resort.
Finally after my last trip to the ER, I emailed Dr. Sherman and told him we were at the last resort and I wanted the ERCP done.
I finally had an ERCP done this past Friday with Dr. Sherman at Indiana University. He was able to do the manometry on my CBD. He said the pressure was over 3x what it should be. He made a 1cm cut in the duct and I woke up with no pain. It is really weird considering I have been carrying the pain in my URQ for about 1 1/2 years now.
On Friday, I just wanted to tell him I told you so, when he confirmed that I had SOD III. I could have had this taken care of in December 08 if he didn’t want to do a bunch more tests.
I know that this might not last and I might need to get another ERCP sometime down the road but for now I am happy to be pain free for the first time in over a year.
My advice to everyone on here is to find a doctor who does ERCP with manometry. If I wouldn’t have stayed after all of my docs, I would still be in pain and just waiting for the next attack.
Hello Everyone, Sorry it has taken me so long to post. Well Thursday was a very long day, I was there at 12:30, and didn’t get the tests done until after 4. I had the Endoscopic ultrasound, and they did the pancreatic function test. The function test involves putting Secretin into the pancreas, and taking samples every 15 minutes for an hour. I will not know the results for three weeks, because they send samples to the Mayo clinic and to New York. After the tests when I was in recovery, the one doctor came in and said that the ultra sound looked good, and I started crying.. I explained to him that I was glad everything looked good, but that’s not helpful for my pain. It was very nice suprise to see Dr. Freeman before I went in. I will be calling on Monday to see what he says about the ultra sound. It was a long ride home, and it’s been a long weekend, with this pain. I thank everyone for the support, and the prayers. I have been thinking about all of you as well, it’s only been a couple days, but I have missed everyone. I want to thank you Judi for bringing us all together. I hope everyone is having a tolerable day, take care Michele/MN
It’s so good to hear from you. You’ve been on my mind since Thursday, the day I knew your tests were being done. I’m glad to hear that Dr. Freeman stopped in. Oh honey, I know what you mean about “normal and it looks good”. It does’t explain the pain. It’s there and real! Dr. Freeman will help you, no matter what the results are. For now, please try to think about feeling better. Thanks for letting us know how you’re doing.
Hi Michele/MN,
Really glad to hear from you. You know what I mean when I sorry you got the “normal” result. Hopefully Dr. Freeman will have more insight. I know what you mean, it’s not like anyone wants an abnormal result, but you want to know why you feel like this all of the time. Already been there, as I know you have. Do you know where in NY they are sending your samples/reports? Anyway, I am glad you made it through ok and got home safely. I’ll be waiting to hear about your reports!
Feel good!
Michele A.
Hi! Michele in MN-I’ve got a question? What was the other test you had called? If I remember correctly from your earlier posts, I thought you’d said that Dr. Freeman wasn’t familiar with the test. Was it another doctor then who ordered it? I hope your day is going well and that you are feeling better!
Kris
Kris, I found my paperwork from Dr. Freeman, this is what he ordered: Secretin stimulated MRCP, endoscopic ultrasound, plus a pancreatic function test (which is secretin stimulated analysis of pancreatic juice output) My family Dr. up here had never heard of one of these tests. Dr.Freeman also wrote in his report, that these are the best tests they have to diagnose subtle,minimal change chronic pancreatitis. (his words) So now I just have to wait patiently.. Ha ha easier said then done. Well I am off to try and get some sleep, I hope everyone is resting easy tonight. I will say a prayer for all of us. Michele/MN
Good to hear from you! I hope to you’re feeling better each day. I’ve had the MRCP with secretin and the EUS, but not the function test. What a long impatient wait for the results!
Michele/MN,
Sorry that I can’t keep people’s stories straight – have you been diagnosed with SOD yet? I think that you have yet to have ERCP – is that right? If the tests diagnose that type of pancreatitis, is that indicative of SOD and then you go the ERCP route? Sorry again but I still am fairly new at this and want to keep track of where you are.
I hope you have a good week and are feeling a bit better. Waiting stinks but hopefully you have good things around you to distract you (at least now and then!).
Hi Jennifer & others….I’m so glad to hear that you are finally pain free!! I am curious..what were your other symptoms? did you have the terrible constant nausea? food staying in your stomach? If so, did these symptoms stop also?? I’m SOD I and suppose to have my ERCP sometime this week….I’m terrified…I’ve read so many other stories about how it didn’t work or made it worse….You give me a glimmer of hope!! Take care!!
Laura,
I just wanted to tell you that after my first ERCP w/spincterotomy I was literally pain free for 2 years! Then they did another one because the pain started coming back and again I had 2 years pain free! So if I had it to do over I would have had the first 2 spincterotomies done but I wish I would have known about the stents I had put in the 3rd time causing me so much pain and I wouldn’t have had that done. I think they caused ductal damage with those 2 large stents they put in. I hope this helps you with your anxiety. It was well worth it for me the first 2 times and maybe you will be lucky and not have to have another one! Good luck to you.
I had nausea when the pain became unbearable and sent me to the ER but most of the time, I just had a pressure feeling in my URQ. It felt like a balloon was in there expanding to the point something was going to burst. I don’t know about food staying in my stomach but I know that after a couple of tests they said they weren’t able to see well because I still had food in my digestive tract even after NPO after midnight.
It is 3 days after my ERCP with manometry and I am still pain free. I even ate some foods that would also send me into a big attack (eggs, red meat) and that did not bother me.
The doctor who did my ERCP did not do a pressure test on the pancreatic duct. He did not feel it was necessary since the pressures in my CBD was so high. He also did not use any stents. He said that would lower my changes of developing pancreatitis after the procedure.
I hope you the doc who does your ERCP has alot of experience doing them. If he has alot of experience doing ERCP’s, you lower your risk of developing complications.
I have also read others experiences that it made things worse or didn’t work for long so I am kinda waiting on the other shoe to drop but for now I will take the pain free days.
I’m so happy that this has worked for you so far! It’s almost odd sometimes when the pain isn’t there. It’s almost like it becomes part of you. It’s a great feeling to not have it! I’ll pray that you continue to haev many pain free days.
Hi Laura -
How did your ercp go? I am guessing that you have had it since your last post I read you stated that you were going to have the procedure sometime this week and it’s now the 23rd. I posted here before but I can’t find it and so if I repeat myself I apologize
I also am sod I and was first diagnosed via secretin & EUS and again in February 09 via ercp w/Dr. Freeman. Please try not to be too frightened of the ERCP because sod
I is the only sod that can truly be “fixed” since it can be absolutely diagnosed because of the physical findings/documentation of elevated enzymes and dilated
ducts. Also as long as you have a doctor who does them (ERCP’s) at least twice a week then you should be fine.
Now if you had seen me when Dr. Freeman recommended that I have an ERCP in order to hopefully help me, I told him it would be a cold day in “you know what” before I would ever have another. (My first ercp is what started up my pancreatitis to start with, i.e. spent one month in ICU).
Obviously I did change my mind when my symptoms worsened and figured the ercp should at least be a lesser procedure than the tp /iat but it took me from June
08 to February 09 before I relented and had the ercp.
I hope everything went well and if you’re not feeling a least a little better, that you will in the very near future. If you have already posted then I apologize again because I’m not very good at these blogs.
Note to Judi Sohn: I am not criticizing this blog at all and in fact I thank you very much for starting it !
Hi Gracie & everyone, I did not get to have the ERCP last week, my daughter is sick , so I am having it on this Monday, I’m glad to hear that there is some hope….I started with a fever again Friday night into Sat but it’s gone now….Has anyone else had random fever with this?? I felt like I had the balloon under there and very nauseous…I tell my husband it feels like a swollen sub sandwich in there but boring pain. I’m so worried about my daughter, she is only 21 and has some sort of lesion in her mouth that the dentist wants a biopsy of right away. She has had a strange thing with her face for 2 years that know one can figure out!! But now she has this lump on her top of her mouth…I hate this! Well thanks for everyones input and hope it’s a better day for everyone. Thanks to Judy for this Blog!!
Hi Laura! I’m right there with you about the baloon. I’ve had it for 4 days again. It’s horrible. I feel like I have a fever sometimes, but haven’t checked it. I hope your daughter is OK. Please let us know how everything turns out for her. It’s scary when our kids are facing something like this. I hope you feel better tonight.
Thanks to everyone for sharing their stories. I cringe just reading what some of you have been through. I have a lot of similarities even though at this point I still am rule everything out phase (another test coming up .. so tested out already …) Janice and I think another person (sorry I am confusing the posts here) mentioned headaches with the attacks – I have those too and thought for awhile that my self diagnosed mild migraines were getting worse. Now I am questioning everything. From what I have read and learned so far, I think Brett sums it up perfectly.
Kris, I am glad you are at a good point with this. I think out of everyone you have the best story, but I would have loved to hear that you just got rid of this and didn’t have to rely on pain management.
Karen, I am sorry about how you are feeling. I am so early down the road on this and already feel dejected and at end of road, so I can’t even imagine how you are feeling at this point. I was sad to see what you said though – I hope that this site has been helpful. While it is a little dejecting (to say the least) to see what an uphill battle it is to get diagnosed and treated and how temporary the fix seems to be, I hope it has helped you to have a spot to talk about it with people who know what they are talking about (not me yet!) and that are going through the same thing. My husband has started calling the people here my “sphincter friends”! Maybe that says somethng about him … lol … but either way I thought a little sick humor might make someone chuckle here.
Hi Michele A.,
Thanks for the chuckle..That’s kind of the way my husband sees this site also. It has really helped to hear others stories so I can read them to him and he knows that I am not crazy and that this is a very real thing I am going through. It does get very old this pain. Sometimes I just want it to go away whatever it takes. I am hoping I can get some answers with the specialist on Tuesday. I also wish I could get into the pain management dr sooner but there is hope that he will be able to get my pain under control. Like Kris said if your pain is under control then it does help alot. Mine is just constant. I wake up in pain. I don’t understand that because it never was this bad. Keeping fingers crossed that I get answers on Tues or at least a plan of action. Take care everyone!
Hi! A friend of mine calls me “The Oddi Princess”. This disease does sound like something from Star Wars. I’d like to send it there, too!
Thanks, Michele A. and Karen for your kind words. I am at the best spot I’ve been since this all started. I had a rough day yesterday. I find myself getting angry when I have a day like that. I have to stop and remember that they all used to be like that and to be greatful that it’s usually 1 day a week or so that is hard. I’m finding that I cannot eat processed foods. I had one of those frozen prepared pasta deals Sat. night. I paid for it yesterday with that baloon feeling under the rib cage, more pain and diarrhea. I have to remember to not eat stuff like that.
Karen-I’m looking forward to hearing about your appointment tomorrow. I send you just a hello email this am before I left for work. I’m on my lunch hour now. I’ll write more tonight to your email address.
Have a pain tolerant day, all!
Well..finally some good news! I went to the GI specialist in Seattle today and he asked me if I knew what triggers this and I said yes..certain foods like nuts,green peppers, raw veggies that are hard to digest,etc. He said does stress? I said well I don’t know. I do have a very stressful job working in a pharmacy. He said well your liver enzymes are elevated and stress doesn’t do that. He said was encouraging to him! so..here we go again with another ERCP and possible stents. I told him what happened with my other dr and when he put stents in they were very painful for 3 months and he said they were probably too big of stents. He said he will (if needed) put smaller stents in for 3 months then take those out and put larger ones in for 3 months and keep doing that every 3 months for a year to hopefully get it to heal open. As he was talking I started crying. he said “I’m making you cry?” And I said it is just such a relief to know that we have a game plan. He said that if I keep closing back down then he will refer me to a surgeon to do a spincterplasty and just “fillet it open”. I am so relieved I feel like a big weight has been lifted from my shoulders. I really don’t want another ERCP done (my 6th) but I can’t keep going on like this. He said he is going to do it under general anesthia this time because then I can’t become combative. He said you’re 48 and you have a life to live! Then I just went to my new primary care dr to get my pain med refilled and basically got “spanked” by the clinical director to inform me that they have a 48 to 72 hr policy on pain medication refills. I said well I didn’t know that since she is a new dr for me. I wish they could experience this pain for just 24 hours and see how if feels! So I might have to go to the ER while waiting my 48 to 72 hours for my primary dr to write my prescription! I tell ya..it’s always something!
Karen, I am very happy for you!!! I can almost feel your relief, of having a game plan instead of being in limbo. I really hope it works for you. That is rediculous about your medicine. I know they have there procedures, but come on! Well I hope you get meds sooner than later. Take care. Michele/MN
Hi Karen! So happy for you! That stinks about the medicine – hopefully once you talk to the new doctor you can set her straight. I wish I could send you some! Please keep us updated. I was so sad reading your post this weekend – really glad to hear that there is a game plan and you are not just sitting there dejected and at the end of the road.
Thanks both Michele’s! It is so nice to hear from all of you on here. It really does lift my spirits. I want to tell the dr that if I was a drug seeker then I would just sit back and let my old dr give me more drugs. Believe me I work in a pharmacy and I do know what dr’s to go to to get anything I want! You try to be open and honest about everything and this is what ya get. If I just wanted drugs then i sure wouldn’t be pushing to go to a new GI doc to figure out what is going on and I sure as heck wouldn’t subject myself to another ERCP with possibly stents. They were horrible last time! The dr today said that this disease is nothing that I did wrong and maybe it could be my anatomy of the bile duct which I think others have mentioned on here before. He said he didn’t want to touch the pancreatic duct unless he really has to. That is fine by me! I hope that you both are feeling good. Laura are you still pain free? I hope you are and continue to be for a very long time.
Kris thanks so much for all of your information. You have helped me alot. I hope you are having a better night. To answer your question about the headaches..I do get headaches all of the time but never correlated them to the SOD..I will pay closer attention now. I thought it was from an old neck injury.
Take care everyone and have a restful night!
Michele A, I have had 3 ERCP’s I had two in 05, and I did good for a long time. I started having some episodes, but everytime I was going to break down and make an appointment, it would stop for awhile. Then this spring it started in and hasn’t stopped. I had my third ERCP with stints in July, but I had no relief at all, I had to have the stint removed, and it didn’t help. So that is why my doctor suggested getting the new tests done, thinking it is chronic pancreatitis.
Thanks Michele/MN! What is the treatment for chronic pancreatitis?
BTW, do you ever get pain in the upper left quadrant? I get that sometimes and it can be worse than the URQ, but it doesn’t seem to be indicative of SOD so who knows what I am dealing with!
Michele A, The EUS didn’t show any pancreatitis, but some gastritis. I have to wait two more weeks for the other results. And if it isn’t pancreatitis they said we meet and talk about pain management. If it is, from the research I have done on my own, they can put you on pancreatic enzymes that you take before meals, and a non fat diet. I haven’t had any pain in the ULQ, just the right and into my back, daily. I have been trying not to take my pain meds, just because I hate to take them, but deep breathing can only go so far.LOL In order to make it a full day at work I have to . But I have a heck of a time going to sleep with them, so I have to take Ambien once in a while and it helps. I hope you and everyone else are having a tolerabl day. Michele/MN
If Dr. Freeman refers you to the Palliative Care Center, you’ll really like the people there. They are absolutely wonderful. Deep breathing doesn’t go too far for me, either! I also have a hard time sleeping with them and have to take sleeping medication. I hope you’re having a tolerable day. I’m having a rough one, as I posted. Please update us when you get your results in 2 weeks. It’s a long time to wait, isn’t it? Are you getting snow up north? We had some mixed with the rain today. I wonder what our winter will be like with the fall being what it’s been!
Just an update on my pain medication fiasco! My husband was able to go pick up my prescription from the dr’s office on Wednesday and when I got home from work and looked at what she wrote for I was totally puzzled. She wrote for more quantity then I had been getting from my old GI dr! I didn’t ask her for anything new so this was a total surprise after the hard time I had just getting this refilled! I don’t understand dr’s sometimes. I go to see her today and I will be telling her what I thought about the whole incident with the clinical director that I had to go to. Hope everyone has a great minimal pain day!!
Good news on the meds! It’s such a relief, isn’t it? i’ve been going through a really rough flare up. I had been doing so well with the meds. I guess I fooled myself into thinking everything would always be under control. I have no idea what kicked this off, but I feel as bad as when I ended up in the ER in August. I can manage the pain with the meds, but I have that really full under the right ribcage thing going on, an overall just feeling awful along with a headache. I made it through work today. I have my 2 grandsons for the weekend. I have to work on my patience. Thanks for listening. I know you all understand.
Hi Kris
I’m sorry to hear you’re not feeling well again and I hope tomorrow will be a better
day for you. You know, sometimes it can be the weather that starts the pancreas
up – how is it up there in Minneapolis?
Andd yeah, that bloated feeling up & under the rib cage thing is the worst – I just
dread that symptom because if not gotten under control pretty fast I know I may end up in the E.R.
You take it easy and take care, that is if your grandsons will allow you to. Just remember tomorrow will be another day and hopefully a Very Good One !
God bless,
Hi! Thank you so much for thinking of me. Maybe it is the weather. It’s been so cold and rainy all month. It’s ben the coldest Oct. on record! I had the flu last week and am still dealing with the lingering cough. Maybe that kicked it off. I really don’t want to go to the ER. I think I got exposed to the flu when I had to take a friend there 2 weeks ago. She was having chest pains and it turned out to be GI related. Imagine that…! I’ll just take the meds and deal. Hopefully, these little guys will stay as mellow as they have been tonight.
Thanks again for thinking of me! It means so much to be able to communicate all this with someone who understands. You’re a godsend!
Aw thanks Kris! I am ok I guess! We’ve had some illness (or several varieties of sick) going through the household – all of us have been sick – my husband and have some cold like virus thing that seems impossible to kick and my older daughter has had a fever that keeps coming and going – hoping the younger one stays well … it is easier to deal with my own GI woes than sick kids (and to think I never believed my mother when I was sick and she said that she wished it was her instead! (and she still says it =) ) I have had a few bad attacks and a couple of more tests that have either been negative or nonspecific – going for yet another one for more fun …. My doctor still doesn’t think SOD but yet has not ruled it out so unfortunately I think I still am towards the beginning of a very long path! I have gotten to the point where it is actually painful to lay on my right side at night. Fantastic, right??
I hope you are feeling better and that you had a good weekend with your grandsons! Thanks for looking out for us!
Hi Michele! It’s good to hear from you! I’m sorry your family has been sick. As we all know, there is so much going around. What test are you scheduled for next? This journey isn’t a fun one at all to get to a diagnosis. It gets really frustrating to have to keep doing test after test. Keep us posted regarding your progress.
I am feeling better. I just replied to Karen. I saw the dr. yesterday at the Pain Clinic. He gave me a shot of Torodol. I feel better today, so I thinkit helped. The balloon under my rib cage only feels half inflated today, so that’s progress!
Thanks Kris. At this point we think that we all got the same sort of virus and our poor older daughter happened to get fever with it (that is what keeps her out of school, which at her young age she still views as a bad thing!) I was purposely vague about the test but I guess this is not a site to worry about TMI … suffice to say I will be providing, er, a sample …. the tests get more degrading each time LOL!! Funny that I mentioned that I am worried about being at beginning of long road – I am almost as worried that I am near end of road where there is no clear answer. Luckily I have a really good doctor who doesn’t seem likely to abandon me. I hope!!
Glad you are feeling better. I know you mentioned not being specifically told which type SOD you have, but didn’t you at least historically have elevated liver enzymes? I thought that finding together with the pain supports a diagnosis of Type I, which usually can benefit from ERCP. But really, I don’t know enough to really say anything intelligently!
Hi Kris,
Thanks for asking about me..I have been meaning to post on here. We were out of town for the weekend and it was a really fun weekend. My husband played in a golf tournament from where we used to live so we were able to visit with old friends and have dinner with them. It was alot of fun. My problem is the car ride. It is a 3 hour drive and that just about kills me. I have heard others comment that sitting sometimes brings pain. I know it does for me. I thought I was crazy at first but someone else mentioned that so I know it is just another side effect of this crazy disease. I have to recline all the way back and basically get as flat as I can. It hurts real bad to have any pressure on my right upper quadrant in the back .
I was thinking about you Kris and hoping you were feeling better. I told my dr about the combo of meds that you were taking and how the Flector patch has worked for you so she gave me some samples to try. I will try the first one today. I’m hoping they take some of the nagging pain away. The Lyrica is not helping as well as I would have liked. It is also making my eyesight blurry and I told dr that if it gets any worse then I will have to try something else because it is affecting my driving now. It is also hell on the golf game!! I go to putt and the ball keeps moving! My husband asked me if the main people affected with SOD are women and I said yes and he asked what age group was on this board. I told him from 23 to 70. I don’t know how old everyone is but I thought that was a pretty good guess. I am 49 years old and was diagnosed at 40 with this.
I have a twin sister and she has not had any problems like this. She still has her gall bladder even! It is just a crazy disease I tell ya!
Laura, how are you doing? How did your ERCP go yesterday? I hope everything turns out OK for your daughter. I have been praying for her. It is so bad when your children have to go thru stuff and you have no control over it. Did you get any news on the ERCP yet? Please post when you feel up to it.
Thanks everyone for your posts and the encouragement..it is such a great site Judy!
Hi Karen!
It’s good to hear from you. I totally understand about the car ride. Sitting for extended periods of time is very painful for me. I have to recline the same way you do because I can’t take the pressure, either. I hope the Flector patch works for you. I think it does for me. Fortunately, I haven’t had any of the side effects from the Lyrica. I guess the 50 mg dose 3x a day is a pretty low dose, according to my Dr. I saw the Dr. at the pain clinic yesterday. He gave me an injection of Torodal to try to help break this pain cycle. I do feel better today. I’m 53, soon to be 54. I’ve been dealing with this for about 3 years. It is an awful disease. I’ll have to tell you about my brother when I have more time to write. He also has SOD and pancreas divisum and had a severe attack of acute pancreatitis about 8 years ago that landed him in the hospital for over a month. Weird, huh?
Hi Michele A.! I still struggle with understanding how the reply option works on here sometimes. I saw your reply to me, but there was no reply option to you, so here I am replying to my last message. I hope you find it.
So, I’m guessing your oldest daughter isn’t a teenager yet since she doens’t want to miss school?
I’m sorry if I asked a question that was too personal. You’re right, though. There is no such thing as TMI on this site. We’ve all been there. Believe me, the pelvic floor study is worse than the sample! LOL!
I’ve never had elevated enzyme levels throughout this whole diagnosis process. I did have highly elevated pressure in my common bile duct when manometry was done on the ERCP. Based on what I’ve read, I believe that to be SOD II. I could email Dr. Freeman for confirmation, as I don’t have any more appointments with him. I know he’d respond. At this point, I’m in pain management for symptoms. Unless something changes, that’s where I’ll be. I so wish there was a cure, but at the same time am so grateful for the doctor I have for pain management. I am feeling better still after yesterday’s injection of Torodol. One thing I’ve really noticed that seems to be consistent through these flare ups is brain fog. Does anyone else notice that when the flare ups are worse?
I hope your family continues to get better and over the virus. It’s been rampant through my office. So far, I’m the only one in the family who’s had it. I hope that means it won’t come back!
I think that with each thread, there is a limit to how many times we can reply to each other – but no worries, I found you!
Nope – just started “real” school. I know – I have clearer memories of preferring being sick to going to school, LOL! (I do also remember being sad though – felt so bad for her!)
You didn’t ask anything too personal – just was trying to spare you the details!! LOL. Oh man I hope I don’t have to do the study you are talking about! Got the test over with. It can’t get worse, right? Hee hee.
You certainly don’t need to e-mail the doctor on my behalf. I am just trying to learn as much as I can. So did you decide to go for ERCP based on the pain and the failure of any other test to diagnose something? I have a hard time keeping the stories straight here but it seems like people who have ERCP without confirmed Type I don’t benefit from it and as a lot of the stories show, it winds up hurting more than helping.
I do feel less sharp during flare ups but I had thought that was just an overall result of feeling like crud.
Hope you continue to feel better. We’re hoping to banish the virus from our home once and for all!
I want to share my experience with the pain specialist, because I pray that it does not happen to anyone else. He told me that I need IV medications and electroconvulsive therapy for this pain. Then he asked me if I had any questions. I responded with I am not having ECT. Because I used the intials in my response he I knew exactly what he was talking about. I don’t think that he would have explained that ECT (“shock therapy”) is experimental and extremely contraversial with potential devastating adverse consequences. He proceed to tell me that I should not wait long. I called my primary care doctor and she certainly was not in favor of this and is going to refer me to another pain specialist.
Thank you for sharing that. I’m not familiar with ECT. It sounds really scary. I was advised by my doctor to not have celiac plexus blocks as they could make things worse, too. I’m glad that your PCP doctor is referring you to a different pain specialists. I had an experience with one that wasn’t good. There really are different approaches they take. The clinic I’m at now is absolutely wonderful.
Hi Karen & others, Thanks for thinking of me…. I had my ERCP w/sphincterotomy on Monday morning 10/26/09. The Dr was very nice and said I had 3 stones in the duct, he cut the duct but did not put in stents, he said I didn’t need them. I stayed in the hospital til Tuesday in the afternoon. They were waiting for my liver enzymes to come down. I had nausea and pain on Monday. I didn’t ask for pain meds on Tuesday. I couldn’t have anything to eat or drink until noon on Tuesday. I had all clear liquids. I have to say, I was really hoping that I would feel a lot better but unfortunately I’m not yet …..maybe It will take a few days. I’m trying to be optimistic!
Hi! I’m going to reply to both you and Michele A. since I couldn’t reply to her on her response to me.
Laura, I’m sorry that you aren’t feeling better after the ERCP. Unfortunately, I had the same results. I was so hopeful that the procedure would take care of the pain and i’d be back to my old self. Well, not so much…I’m hoping that you have better results. You’re right though, it could take a few days and continue to get better! Please let us know how you’re doing.
Michele A. I also have a hard time keeping everyone’s stories straight. We’re all so similar, yet unique in our own way. I had the ERCP done because of pain, pancreas divisum that showed upon the EUS and MRCP and because an ultrsound showed that my common bile duct was enlarged. The ERCP showed highly elevated levels in my common bile duct. Dr. Freeman cut it and put a short term stent in. Unfortunately, it didn’t do anything. In fact, I think it’s worse since I had my gall bladdde out in May and the ERCP done in July.
Let us know what the results of your most recent test are. I really hope you don’t have to do the pelvic floor study. It is seriously THE MOST embarrassing test you could ever have done. It’s a bummer that we have to endure all of these tests to eliminate everything else to get to a diagnosis!
I hope everyone is well tonight. I’ll look forward to hearing from you again.
Has anyone heard from Michele in MN? I hope she is doing ok after her tests recently!
Kris, Sorry it has been a few days, It is two weeks today and I haven’t heard anything yet. I had a few mild days, but today is rediculous!! When they came up with the conclusion that there wasn’t much else they could do for you, what is the process or what do they do within the pain management clinic? The last time I called last week about my ultrasound results, that was mention if the results of my function tests came back normal. This lovely weather we are having is NOT helping !!
Laura I hope your feeling better today, and everyone else is having a tolerable day, Michele/MN
Hi Michele! It’s good to hear from you! How frustrating to have to wait so long for test results. Carrie called the Palliative Care Center and got my first appointment for me. They are in the same building that Dr. Freeman is in. Everyone there is just incredible.They take a very holistic approach to this. I’m working with their social worker as well. We did It’s already helping me to relax a bit, at least. You will not have to worry about being prescribed enough pain meds. They are very understanding and take care of you. When I was there on Monday, I told Dr. Carter that I was in the middle of a really tough flareup. He gave me a shot of Toradol to try to break the cyle. I think it helped. I finally feel better today. The usual pain is there and I don’t have the baloon feeling under my ribcage for the first time in days. You’re right. Maybe this awful cold rainy weather contributes to how we feel. I guess it could be snow….oh, that’s right. it will be any day now!
Thanks Michele….I had a terrible night and went to my regular GI (I have only seen him 2 times) this am….He seems to be under the assumption that because I had my duct cut I should be fine…..He is telling me that it could take a couple of weeks….gave me a prescription for reglan and percocet but said he will not refill them….I didn’t feel like he is taking me seriously…..I told him the nausea is awful and worse than before the procedure….I’m discouraged not only from his response but I really was hoping that this would alleviate the symptoms…..well anyone with comments is greatly appreciated….thanks
Thanks Kris. I can’t imagine what that study would show or rule out. Ick! I am sorry you had to endure that!! Well, at the very least I made a few of my closest friends feel better about their mornings yesterday – they and my husband are the only ones who know about that particular indignity – oh, right, and all of you!! But sphincter friends share all, LOL.
Is the MRCP basically like an MRI, and good at detecting SOD but not the gold standard that is ERCP? Did you have it at the same time as EUS? I had EUS before gallbladder removal but after GB was out had endoscopy, which I don’t believe is as detailed. With all of these tests, I have yet to have a basic ultrasound (at least not since way before GB was out, to detect if there was a problem with GB). I would have to think that the other tests I have had would be as good if not better at detecting problem, but who knows.
I think I will hear back in a week – I’ll keep you posted. Hope you are feeling good.
Hi! Believe me, you don’t want that test! The worst part was the morning I got to the office, a guy arrived at the same time I did. He opened the door for me and was on the elevator with me. We exchanged a few words. When I got in to the clinic, they said they had a visiting dr. from China and asked if it would be ok if he observed. I figured, what the hell, I’m already going thorugh the indignity. What difference does it make if there is one more dr. in there? Well, guess who it was. Yup. The elevator guy…Embarrassing, for sure!
I had my EUS done in Jan. of this year. That showed pancreas divisum. The MRCP was done while I was hospitalized in June. It showed that my common bile duct was dilated. I think that the ERCP is the only true was to diagnose SOD. The ERCP was then done in July. That’s when he found that my pressures in my common bile duct were very high and diagnosed SOD. I’m assuming it’s SOD II based on the criteria for SOD.
I am feeling better finally today. Thanks for asking! I hope you’re doing ok as well.
Hi
I am also a sufferer of SOD. Over 5 years ago I started to take Duromine to lose weight and was astounded at the results , I lost 35 kilos in 3 months . I looked great and felt good about myself, then one morning woke with the worst excruciating pain in my stomach just under my Xiphoid and to the right under my ribs. The pain was that bad I rang for an ambulance. I was taken to hospital and was given morphine which only seemed to increase my pain , the nurse and doctor was alittle amazed by this. After about 2 hours in hospital the pain went as quick as it had started and I breathed a sigh of relief. About a week later it happened again I couldnt believe how bad the pain was , I’ve had 2 kids and that pain didnt seem as bad as this. The next couple of visits to the hospital I was being treated for the pain with pethidine, Endone , Prolodone supp, Buscopan , morphine , only to have the pain intensify. The treatment I got at my local country hospital was apalling , I was told by one inparticular Nurse that I was suffering with heartburn and that I should take Mylanta and go home, I was told by one doctor if I wanted “My drugs” to go to another hospital and was treated like a druggy. No one would believe how bad the pain was , I had worked it out that the only way to manage the pain was to have the gas , this was the only thing that would help, so as soon as the ambulance would come I was put on the gas. After 5 trips to hospital they decided to take out my gallbladder , I had no stones and even the doctor on his rounds the next day said he was surprised to find the gallbladder had no stones and hoped that was what the problem was.
Well surprise , surprise 2 weeks after having my gallbladder out I was back in hospital having another attack of severe pain , they told me that I must have a stone stuck in my ducts and they sent me for an ultrasound-nothing was found . I was sent home. In 3 months I was admitted to hospital 12 times . I was then sent to a Gastroindaoligest, he diagnosed me straight away with SOD ,I was so relieved to finally have a name and condition for what I had , and that I wasnt mad and going crazy . I had 2 ERCP done and my sphincter of Oddi had slits cut into it , to help it relax , the first one was done and i went 2 years pain free and then the pain started to reoccur and thats why the 2nd one was done, I was told that no more can be done as this would weaken the muscle too much and theres to much scar tissue. I was prescribed Nitrolingual spray which I spray under the tongue whenever I get pain , this helps to relax all the muscles if the body , it’s used for cardiac, it’s a wonder drug in my eyes .I take it every where with me I cant live without it , I fortunalty dont have many attacks anymore , I can sometimes feel a movement within my duct , I’m not sure what this is I havn’t been back to my Dr for along time I try to keep clear of Hospitals now, but when I feel this movement it feels like its food or bile or something moving through one of my ducts and when it does it is like something has prodded me in my right hand side , when it passes through it becomes really painful and thats when I spray my nitrolingual and instant relief .I was glad to find this site and read all about your problems with SOD. When your going through this you feel like your the only one with this problem and even the doctors dont know what it is and thats really scarry , I suffered depression because of it and that affected my family life . I hated being sick and not knowing what was happening to me. I live in Australia and I heard it’s a rare condition .Well anyway I thought I would share my story and best of luck for everyone and I hope you all can live pain free.
Moni
Hi Monique! Thank you so much for sharing your story. As you know all too well, the road to diagnosis with this awful disease is a long one. It is a rare and unusual disease. There are doctors out there who don’t believe it exists. I’m very happy to hear that this medication helps you. I am going to ask my doctor about it. Please keep communicating with us and let us know how you’re doing. You are not alone in coping with this!
Kris, I’m glad that they are understanding, I just wonder how that will work with me being up here. I supose I would get any meds from them, and if I needed a shot, they could just have a standing order in my charts. My regular Dr. up here is pretty understanding which is nice. I was about ready to go in yesterday for a shot, I had to leave work early, because I was having such a bad episode. I am at work today, but on my meds of course… I want to call Carrie again to see if she has heard anything, but I hate to bother her.
Hi Michele!I’m sorry you’re having a bad episode. I’m in the same boat. Yesterday was better, but today I feel awful again and am having so much pain. I’m faking it til I make it at work. Have you gone in and had a shot before when you’ve needed it?
I don’t see any reason why you couldn’t go to the Palliative Care Center at the U of M. They would probably want you to come in every 30 days or so for follow up, but maybe you could work out a longer time between visits since you live a couple of hours away. I really believe it would be worth your time to make the trip to go there. Let me know how you’re doing. I hope you feel better!
Guys ask your doctors about Glyceryl Trinitrate it is the wonder drug 1 , 2 or3 sprays under the tongue and presto no more pain it relaxes all the muscles within the body the only side affect is it gives a bad headache , but hell I can live with that . Take a nurofen for the heachache.
Moni
Hi Moni! Thanks for sharing about the Glyceryl Trinitrate. I am going to ask if it’s available in the US. If not, maybe there is something similar.It sounds like it works so well for you!
Sub lingual nitrate spray is available world wide. It’s a very old treatment for angina as it dilates the coronary arteries relieving heart/chest pains. In fact it relaxes all smooth muscle of which the SO is one.
It can be purchased non prescription in Australia at any pharmacy and I’d be surprised if this was not the case in the USA.
You may need to use it more frequently than prescribed – 2 sprays every 6 hours. If you can stand the headache (it’s like a pimple when you have cancer to me) you can use it much more frequently – I’ve used it at 30 minute intervals. Be careful getting up or standing quickly if you have normal BP as it lowers this substantially and you can get hypotension, dizziness and blackouts.
Thank you, Brett! I will check it out, but I’d be surprised if its over the counter at a pharmacy here. You’d be shocked at what isn’t! My good friend is from England. He always comments that you can’t even get Paracetomol (sp?) here.
Monique your story could be mine. I live in Australia as well
I have found buscopan etc no help at all. I was hospitalized when an endoscopy flared it up big time. Turns out it was the anesthetic AND the morphine they gave me that the hospital.
Fortunately it was diagnosed later and they also put me on the sub lingual nitrates and off morphine. I find it helps me quite a bit – but mostly takes the edge off for 30 minutes or so. When I get a bad flare it doesn’t work as well and wears off quickly. You can get patches that last longer but they tell me you can accommodate the their effect – so I’m holding off as a last resort.
Even though trinitrate is a nonspecific smooth muscle relaxant – I’m fairly confident if it gives you relief (and buscopan etc doesn’t) it’s the SO – and your case helps confirms my suspicions.
I have found a leading expert in Australia – DR James Toulli in SA. He’s the ONLY one in Australia that has similar credentials to the specialists USA docs and can perform manometry testing.
I’m concerned by the number of people here who get relief with sphincterotomy only to fnd it return and reclose. The quoted numbers are 10% in 10 years. I think the docs are doing incomplete cuts out of fear of complications as the reports here are way more than 10%.
Were you type 111 ie no positive enzyme tests, normal ducts etc?. Did they cut the SO alone or the pancreatic sphincter as well? And how did they decide to do the cut? I’m guessing they just took a shot in the dark since we don’t have manommerty anywhere else than SA.
I’m scheduled to see DR Toouli’s partner in 2 weeks – he just herniated his lumbar disc.
Hi, I just try and read this hear and there when I get an opportunity. I just wanted to metnion a couple of things…I was diagnosed with SOD type 2 and had an ERCP done they cut the bile duct and my pancreatic duct (which had the highest pressure) and put a temporary stent in. One of you had mentioned nausea so much worse afterwards and I agree with that as well..I had mentioned that in my prior posting. I’ve learned through trial and error what foods to eat or not eat. But, my pain is nothing like it was before. I do every once in a while get that pressure feeling under my right rib cage but it is manageable. So i’m wondering if from getting cut this somehow ‘messes up’ the flow of things which causes nausea? My nausea is slowly getting better I am now 6 months post ERCP and have maybe had 2 bad nausea days in the last month.
Brett, I know you didn’t ask me, but I did get pancreatitis after my ERCP, but nothing more since. Also I wanted to mention that when I reserched SOD I found that Morphine does make your pain worse, can actually put you into a pain attack. I found one dr who researched and that is actually a test they do on patients to see if they have SOD. I know when they gave me morphine the first time i was admitted it spun me back into an attack and had nausea and vomiting. I would search SOD I believe it was on the Indiana University website. I went to Dr. Fogel and he did an awesome job with me!
Hope you all are doing good. Thank you for sharing your stories. It is nice to see I am not alone.
Have a good evening!
Hi Brett
I’m not sure what procedure they used to cut my SO , I was abit niave to what they were actually doing to me , all I know was that i didnt care what they did just as long as I was pain free . My liver enzymes was positive and even now I occasionally still have my liver enzymes checked I have never had pancreatitis and didnt suffer with this after my ERCP, but I also get my pancreatic enzymes checked aswell , I do this for peace of mind. The only side affect from the ERCP was I was tender and sore and even for along time after , it was even hard to wear a bra, and cross my arms, as this area of my torso was very tender and sore .It sounds like you are still going through the hard times , I’m curious as to how long you have been suffering with the condition?Did you suffer with pancreatitis and where did you have your ERCP done? I’m so glad to be talking to people who have suffered as well , I am studing nursing and when I was listening to a lecture on the digestive system and about the SO, I googled and found this webstie , I wish they had something like this when I was 1st diagnosed, I remember looking up the condition and reading about pancreatis and freaking out , I thought I was going to get cancer of the pancreas. My doctor really didnt tell me too much at all , or then again he might of and I wasnt listening.You sound like you know alot about this condition, and have tried the same medications. Before trying nitolingual my doctor tried me on a calcium -channel blocker Adalat, this gave me the worse tachycardia and palpitations . Anyway good luck with the manometry test and please let me know how it goes , are you having to go to SA for this?It’s been good talking to you. I am learning alot from this website .Thanks
Moni
I’ve had intermittent bouts of severe pain for 30 years. But It always resolved after a day or a few hours. Recently I had a endoscopy and got a severe flare up that hasn’t gone away in 8 months now – though it is slowly improving.
I have not had any further intervention – gall bladder intact and no ERCP. I am scheduled for ERCP manometry in a week and am a scared witless I’ll go through the same pain I had post endoscopy – though they assure me that was the anaesthetic.
It was only recently I was diagnosed with SOD but I have no positive tests, no dilated ducts, pancreatitus etc – making me type 111 – and there’s a lot of debate as to whether type 111 SOD is real or not and it does seem a lot of those diagnosed with SOD have IBS variations that don’t respond to sphincterotomy.
The big question is whether pain can arise from the SO – without elevated enzymes or dilated ducts. Some think it can others don’t. Long term studies appear to show only 8 % of those with type 111 (even with positive manometry) report improvement at 2 year follow up.
There are at least 2 type 111 folks here who reported sustained improvement with ERCP – so that seems to refute the 8% right off.
I also tried nifedipine (Adalat) and this definitely made me worse as well.
I’m going to SA because it is the only place in Australia that has manometry – can you believe that – not Sydney or Melbourne?!.
The docs here in QLD basically said if I can’t stand the pain any longer I could beg then to do the ES – ERCP. When I asked how they’d know which sphincter to cut without manometry they said they’d cut the SO first and if that didn’t work they’d cut the pancreatic duct next.
Then the doc got annoyed at me for asking questions and doing my own research, and sent a letter to my local physician saying my main problem was I’m focusing on the problem too much and doing too much research – basically it’s mental as well.
So I decided QLD is not the place to have this treated. I was going to the USA before I found Doc Toulli was a world expert and has the equipment and experience here in Australia.
Thanks for the kind wishes. I’m a bit concern I won’t get to see Dr Toulli now but they assure me his partner is just as good and does liver transplants as well. Fingers toes and everything else crossed.
Hope things go well. I did not get Post-ERCP pancreatitis with the billiary mamometry (elevated at 150-200mmHg) or billiary sphincterotomy. They did not touch the pancreatic sphincter with that ERCP. I am not sure if other people had that experience. Hope that helps.
The key here is that as long as the doc doing your sphincterotomy is very experienced
(at least 2X/wk) and that he has been doing them for light-years, then try not to worry. JUST MY OPINION.
Seems pancreatitus can occur when you least expect it but the worst numbers are about 30%. The best are as low as 4%.
The operator, the hospital and the support team all seem to be significant factors in reducing risk. Just having SOD unfortunately elevates your risk quite a bit but you definitely want the doc to be doing more than 100 a year.
The treatment after you get it is at least as important.
hello, my name is cenola friends called me cece. your onfo on this sphinter is so complex. in june 2009 agastro doctor told a needed this sphinster done but I dont know what will happen I do know from research, this ism serious, cancause pancretitis. I am glad you are able to go to the best, this is what i want to do. they have a very good clinic in Flemming Floridia. Its on a islandthe clinic name is Flemming islandsurgery clinic,borland groover home. the phone number is 904-644-0700. I WISH I COULD FIND OUT MORE IN AUSTRAILA THAT GOT TO BE GREAT. GOD BLESS YOU. CECE. OH ALSO I HAVE LUPUS. OH HAVE YOU HEARD ABOUT A procedure called fundoplication where they wrap your stomach around your esophagus. this is a bit much.
A fundoplication is used to surgically treat GERD as a result of a hiatus hernia. The hole in the diaphragm (esophageal foramen) enlarges and allows a portion of the stomach to slide up through.
In a fundoplication the hole is reduced and the top of the stomach is wrapped to form knot which cannot pass into that hole. This is typically an endoscopic procedure and relatively safe in experienced hands.
Typically though GERD can be well managed with PPI medications and a fundoplication is a last resort for the worst kind of hernia that strangulates .
Lupus – or SLE is a disorder of the immune system. Cortisones are most commonly to treat SLE with success – but nasty side effects. There is some recent research into using biomodifiers which block an immune system stimulant called TNF (tumor necrosis factor).
The drugs are called embril, or remicade in the USA but are quiet expensive and experimental for SLE. They have been used with great success and minimal side effects in other autoimmune diseases like rheumatoid arthritis, Chrones etc.
Doc are reluctant to mention these drugs and insurance companies slow to cover them – but it’s worth asking.
Pleaselet us know the date of your procedure so we can all be thinking of you and keeping our toes, fingers and everythng else crossed, too!
Shame on that doctor for admonishing you for doing yuor own research. We all know too well how we have to be our own advocate! Who knows what would have happened if you’d stayed with the drs. in Queensland.
I was fortunate enough to go on holiday in your beautiful country 3 years ago. We went to the wine country in the Hunter Valley, visited the Blue Mountains and then spent 10 days at a timeshare halfway between Sydney and Melbourne in a small town where my cousin had a timeshare. What a fabulous place Australia is….except for the 16 hour flight! in spite of the flight time, I’d go back any time.How faar is SA from where you live? Having been there, i have an appreciation for the size of it! I, too, am surprised that these doctors aren’t in Sydney or Melbourne. The good news is that they are in Australia and you don’t have to travel to the US. I’ll be thinking of you and sending lots of positive energy your way! Thanks for all you do to help and support all of us.
I’m doing somewhat better now and really want to discuss things with the Doc before proceeding. I can almost live with it now if I have to.
I do have the ERCP with manometry booked 2 days after an initial consultation. The doc will need to have the right answers before I proceed and I don’t care if she gets annoyed as well – but I’m expecting a female doc wont be on the ego trip many male docs are.
The first specialist did help me at first with diagnosis – but became annoyed when I refused to have a second endoscopy – 4 weeks after the first one flared me up so badly – got a second opinion -and asked a lot of questions. What annoyed me was he sent a derogatory letter to my local doc here. This doctor is one of my main referral sources and he could have seriously affected my business..
Unfortunately this is a common behavior – you just need to recognize it early and move on to another doctor ASAP. You must do your own research and ask a lot of questions. I’ve seen what can happen if you don’t. Any doc who gets annoyed by this is not the doc for you.
I’ve only been back in Australia a few years after living 20 years in the USA – mostly Hawaii. I now live on the coast 3 hours drive from Brisbane OLD – which is about a 3 hour flight to SA – much less then the first trip to Detroit the first time I came to the USA . Brisbane to Sydney, Sydney to Hawaii – Hawaii to San Fran, San Fan to Chicago, Chicago to Detroit – 36 hours all up – talk about jet lag.
Many thanks for the kind wishes and positive thoughts.
hello to anyone that can help me to understand this ERCP this is my diagnosis my gallbladder was removed in 2006 .I have pain still in the big cut i recieved.this pain is a pain I wouldnt wish own anyone.I am just been diagnosis in June. the doctor wanted to surgury in
aug. but I did not have it done this was news to me. thank you CEE
Brett, I pray that everything goes well for you, and you get some kind of relief. That Dr, was obviously intimidated by your knowledge. Lol I know we appreciate it. Well I am impatiently waiting a call from the specialist that did my pancreatic function test. Dr. Freeman’s nurse called me back and said some of the results are in, but they don’t say if they are negative or posative, and she wasn’t able to understand them. So as soon as I know I will be back on to post what I find out… Good luck!! Michele/MN
Will all the well wishes I’m almost certain to do just fine.
The doc did say,”with all the research you are doing you know more than me” – which I thought was a strange thing to say and didn’t inspire much confidence . I replied.” well if it was a simple, safe procedure I won’t do any research at all – but your the one that told me how dangerous it was – wouldn’t you do the same if it was you?” He didn’t seem to like that much.
From what I can ascertain, pancreatic function tests are complex and interpretation is equivocal – levels of enzymes like amalyase are used and there are normal ranges that fluctuate pre and post food so the nurse was right to leave it to the doc.
Pancreatic duct pressures as far as I can tell should be the same range of normal as the SO – at 40 mm of HG. Typically this would be cut at the time of testing if the pressures are high. High pancreatic duct pressures due to sphincter dysfunction is a known cause know for what was previously called idiopathic pancreatitus.
They used to test the biliary duct first and cut that only if pressures were found to be high – unfortunately high pressures are common in both sphincters – about 30% so doc Freeman is now testing and cutting both routinely. Which may explain his considerably higher success rate in treating type 3.
Your in very good hands. I just hope my new doc will be as good.
Dear Brett….I hope your procedure goes well..I can’t imagine suffering all those years with these terrible symptoms. I’m very new to all of it and sick of it and I’ve only been sick with it since 4th of July……I was very scared also…I had my ERCP w/sphincterotomy last Monday…I had some pain afterwards but not too bad….I wasn’t allowed to eat or drink for 24 hrs…I did have my usual nausea and bloating for the lst few days…but Sat & Sun for the lst time in 4months I had no nausea!! Today, I have been having more pain again, the dr said it may take a few weeks for everything to calm down.
Hopefully it will help you…Keep us posted….I would like to hear from anybody that has had it done, if it takes a few weeks for improvement. I’m trying to be optimistic! keeping our fingers crossed
Brett..you are in my prayers that your procedure goes well and the recovery is minimal. I am with ya on being scared. I told the dr that I’ve had just enouogh of these to know what to expect so could they give me something to relieve the anxiety before I go in again in Dec. I am hoping that you don’t have the same problem but are they using different anesthia this time? Please keep us posted on how you’re doing..we all do care about each other and need to stick together with this. I feel like I have gained a whole circle of “spincter friends”! It’s just awesome to be able to share with everyone on here and get the words of encouragement and understanding from everyone.
Laura..I’m not sure that you have read my story but just wanted to mention to you that after my first 2 spincterotomies I was completely pain free for 2 years in between! It was awesome. So hang in there girl it will get better I’m sure of it.
I read you stories Karen and that’s the main thing that encouraged me to proceed – and kept me going. I am concerned about the frequently reported re-occurrence of symptoms being far greater here then the 10% in 10 years the docs claim.
Watching doc Freeman do the surgery it’s hard to imagine any sphincter reclosing with the extent of the cutting he does. So I’m a bit confused.
I had an attack again yesterday. I took the spray as soon as I felt the symptoms come on and it relieved the pain in about 10 minutes – I kept it up every hour (way more than allowed) and got though OK.
Given that relaxers for the stomach like Buscopan (hyoscamine) are no help at all it’s hard to imagine any other source of pain in my case than the SO.
So I’m quietly confident the ES will do the trick. I’m not scared of the procedure so much as the pancreatitus that might happen after.
I think you can take the 2 day COMPLETE resolution of nausea as a very promising sign!!. After the surgery there is a lot of swelling that will take some time to resolve so if your getting substantial improvement his early that’s terrific.
In the cases I have read where this procedure worked the story is much the same – almost immediate relief with some reoccurance then progressive improvement.
I’m quitely confident for you.
I can handle somatic (body) type pain no problem. I’ve walked 2 miles with broken ribs and a thoracic crush fracture. I’ll take that any day over nausea. I don’t know why but I just can’t cope with it at all. If they can get rid of the nausea I’ll be delighted regardless of other pains.
Hello this is CEE, again I live in ILLINIOS In a town called BellivilleI am trying to find out the best Surgeon that can take my case. The pain is rotating from upper right shoulder to lower back. The closes state to me is St. Louis Mo. The doctor that made this diagnosis is not capable in this type of surgery. I have read about this Doctor Freeman hes seems wonderful. I have posted two comments on site, this is my first time ever doing this, I hope you can understand this writting. thank you for any replys . Cee.
Cece,
Indiana university medical center in Indianapolis sees more pancreas cases and SOD cases than anywhere in the world and you are right next door !
Pain radiating the the right shoulder and back is classic for the gall bladder. Since yours has been removed – and post GB removal ,SO dysfunction is common – the SO is the next most likely culprit.
Removal of the GB cuts the nerves that can control the SO muscle and about 10% of people (commonly women) get SOD post GB removal.
My pain is all epigastric – and mid line between the sternum and naval. Apparently this is quite common as well.
Hi Brett! Thank you for this simplistic explanation.
I did not know after all I’ve read that removing the GB cuts the nerves controlling the SO. No wonder removing it causes additional problems in those with the possibility of SOD. Dr. Freeman told me that removing it can make those with suspected SOD worse, but didn’t explain why. This makes complete sense to me. Thank you again for all of your research and the information that you share. I’ve got your appointment dates noted on my calendar and will be sending you positive energy and warm thoughts for success.
Dear Brett,
As an acupuncturist I can tell you, the midline between the sternum & naval is called the “Ren” channel. This is an extremely painful zone to be massaged during a flare, but you may be able to take acupuncture to these areas quite comfortably. I acupuncture myself as treatment for SOD and have trained my signifigant other to place needles in places in my back that are especially for Pancreas / Spleen. (In Traditional Chinese Medicine, they are the same organ of energy) If I understand your posts correctly, you are in South America now, if so perhaps you can try some accupuncture while you are there. Also, it did cross my mind, Brett, is it possible you were received so well by the treating specialists in the states because they finally had a guy to work on ? After all the rarer bird is always the most welcomed !
Nymphaea
What about pain that feels like a band running all across the abdomen and burns. Anyone have this? My understanding is that it is referred pain or visceral.
Comments welcomed please!
Certainly unusual symptomatology and not classic for SOD.
Have you been checked for chronic abdominal wall pain?
Here’s a study:
Chronic abdominal wall pain (CAWP) occurs in about 30% of all patients presenting with chronic abdominal pain. METHODS: The authors review the literature identified in a PubMed search regarding the abdominal wall as the origin of chronic abdominal pain. RESULTS: CAWP is frequently misinterpreted as visceral or functional abdominal pain. Misdiagnosis often leads to a variety of investigational procedures and even abdominal operations with negative results. With a simple clinical test (Carnett’s test), >90% of patients with CAWP can be recognized, without risk for missing intra-abdominal pathology. CONCLUSION: The condition can be confirmed when the injection of local anesthetics in the trigger point(s) relieves the pain. A fasciotomy in the anterior abdominal rectus muscle sheath through the nerve foramina of the affected branch of one of the anterior intercostal nerves heals the pain.
Brett,
Thanks so much for all your info. My GP and the Gastro doc have been confused because my symptoms are not always typical of the SOD III, but I have some. After an hour of talking with my GP this morning (he had no one else scheduled), he thinks I could have either CAWP or some major scar tissue adhesions because I have had 6 surgeries in my 58 years of life. The pain always starts in the appendix/ovary area where they were removed years ago. I am not sure what is going to happen. I have a good GP and he is going to talk to some other doctors to see what they think. Either way, there will be no surgery unless that is the last resort and not for awhile. Everything else is going to be checked including CAWP. I printed the post and took it in this morning. Something lower is triggaring the common duct and making it scar over or spasm. I hope all goes well with your doctor visits and you can find some relief. I am about to drop after a week of intense pain and living on pain meds and hyocosamine.
I get that kind of pain periodically. Sometimes it feels like it is so tight that it is going to burst. I don’t know what it is……….but I do get it. I am in a flare-up right now after having a month or so with things quiet. I use hyocosamine, but after a week this time it is not helping much. I have been reading the posts as they come through and my husband wonders if it is they way they take out the gall bladder now that could cause some nerve damage. Working through little holes may not be the best way after all. I wish all a good day and an answer to this painful problem soon.
Kris,
Just had to say thanks for all the kind words from you and the information that you have shared. Do you mind if I tell my pain management dr what you have found that works and how they are treating you when I go to my visit on Nov. 20th? I just really don’t know what to expect. I hope that he is understanding about SOD. I don’t want to be drugged out and not be able to function and work but like I told my husband..I just want to be able to take a pain pill and have the pain actually go away! I have this pain daily and it sure does get old.
No problem at all! This pain does get old…quickly. The regimen is helping, but i did just go through another major flare-up last week. The meds helped, but it still was really rough. I
felt so good for the first 4-5 weeks. I guess I fooled myself into thinking it would be that way all the time, forgetting that major flare-ups do happen. The good news is that I’ve come out of it and am back to feeling better and managing as before on a daily basis. Let me know if I can help with anything more before your appointment!
Hello everyone, I received a call this morning, and was told my enzyme levels were ok, but my pancreatic bicarbonates are low, and I will have to wait for Dr. Freeman to explain this and see what we do about it. I have looked some information on the web, but it’s confusing. Dr. Freeman is out until next week, but I left a message with Carrie his nurse. So I am going to continue my research.. I hope everyone is having a tolerable day. Michele/MN
Interesting. I haven’t heard anything about this at all. I know it’s frustrating to have to wait for explanations. It’s been a long wait for you already! I hope you’re feeling ok. Thanks for keeping us updated as you get information. Take care, Michele!
Kris, Well I bothered them again today, because I was hoping the report could be sent up to my regular Dr. up here, but Dr.Ladell’s nurse said he hasn’t completed the report, so I will wait some more. But she did describe it differently she said pancreatic insufficiency, which I found alot more information on the web for that. Michele/MN
Hi Brett
I was astounded to hear how long you have been suffering on and off in pain , you poor dude. I will think about you next time I have a pain episode and think how long you have suffered. You must live up the coast as you are a 3 hour drive from Brisbane , I live at Laidley . I’m the same as you , have little faith in the Qld doctors, I try to avoid going to the doctors , the only time I will go is to get a referral for bloods. I have had such bad experiences with the doctors and hospitals. I know one thing is that when I become registered I will have a lot of sympathy and understanding for anyone that is admitted with pain in the upper gastro area. You must be getting close to having your ERCP manometry done , what date are you having it done. I wish you all the best and dont stop asking questions , just because they have the degree doesnt mean they know everything and it’s good to hear that your testing that knowledge. I like reading your posts your very knowledgable, makes me think you might work within the health industry, don’t worry if the doctors dont appreciate your research , because I do and it sounds like everyone else on here does to. Good luck it sounds like you’ll be in good hands if his partner does Liver transplants, it sounds like he’ll know what he’s doin. Let me know how you go and I’ll be thinkin of you .
Moni
I live at Rainbow beach now North of Noosa (after 15 years on Maui I couldn’t face Brisbane) but used to go Hang gliding near Laidley (at umm… Minden I think) when I lived in Brisbane many years ago. So I’m familiar with the area.
One of my patients went to see one of the top GI docs in Brisbane at the PA hospital. The doc immediately recognized the problem – and the fact that he could not deal with it in Brisbane – and sent him to SA and Doc Toulli. The patient showed me the referral and in it the doc describes Toulli as a world expert – and recognizes his own limitations in QLD.
This was about 2 weeks after I did the research and found him myself and made an appointment . I thought that was an amazing coincidence and it immediately convinced me I had made the right decision.
What annoyed me no end is the specialists I had seen in Brisbane NEVER mentioned this possibility – even when I directly asked. At best they said manometry was available in Adelaide but didn’t recommend I go there or offer a referral – even when I said I was considering going to the USA .
When you read the research it states unequivocally for type 111 you must do a manometry test – no ifs or buts.
I will say the QLD docs did get the diagnosis right and were correct to be conservative – this is dangerous intervention especially in the wrong hands. The meds they prescribed were spot on.
What I can’t figure is why they can’t get manometry equipment at other centers in Australia – it’s just a sophisticated pressure monitor that’s it – probably far less expensive than an MRI. Even in the USA it’s only available at specialty centers. One thing I’ve learned from all this if you have suspected SOD you must go to a specialty center. Local GI specialists are just not up on SOD well enough and the statistics clearly support this.
The incidence of post ERCP pancreatitus is far lower in specialty centers.
I’m glad my comments are appreciated and I do what I can. My area of expertise is orthopedics so what I write should only be a very rough guide and no substitute for real education and experience in this area . I do use research data, not opinion to base my comments, but even this can be inaccurate or out of date.
Interestingly, every thing I have read of Doc Toulli’s is supported by the research – and he’s done some of that research himself. I’d thoroughly recommend you doing the same if you can afford the trip.
I see the Doc on Nov 10 with the ERCP scheduled 2 days later if I’m happy to proceed. I’ll let you guys know how it goes as soon as I get back.
I have not been on for a few days and have had a lot of catching up to do!
Brett, thanks for all of your helpful information. I really hope things go well for you this time. Keeping everything crossed for you. Shame on doctors for scolding you for educating yourself. I understand that they don’t want to deal with people who go off on a tangent and convince themselves that they have every bad thing on earth, but just from reading your posts I can tell that you are very intelligent and educated and that you have done very good, targeted research, and that is not something for which you should be punished. I think some doctors are holdovers from the old days where they were to be revered and not questioned. I am so happy mine are not like that but sorry that you had to encounter ones who are.
I am surprised that mamomentry is all but mandated for Type III unless I am misunderstanding what that is (I am pretty much a newcomer to all of this). Perhaps it makes sense once you take into account that centers that specialize in ERCP have much lower risk of complications. The studies I read showed less than ideal success rates on patients with Type III. However, I absolutely can see the willingness to do it given the alternative of trying to live a normal life with the pain. I am so with you on the nausea too. Worse than the pain I think.
Michele/MN – Speaking of having to do your own research – I feel so bad for you that you have been left hanging with this. I am no Brett but if you want help trying to figure out what you may be dealing with, I can try to help you with the research. Either way, please let us know what you find out.
Laura, I hope you are feeling much better. So glad there are positive signs.
Kris, hope you are continuing to feel better.
And Karen – you drug seeker LOL – hope things are good with you.
Thanks to everyone for sharing their stories. Hope everyone is having good week and apologies if I am snubbing anyone – not my intention at all!
It is true that some doc feel you don’t trust them if you ask questions. The fact is that they are probably right in my case. I’ve seen far too many mistakes to put my blind trust in any doc.
The problem with type 111 is it mostly diagnosed by the absence of positive tests. But there are numerous conditions that can also cause the pain and not show up on tests. Acalculous GB and IBS variants for instance. So it’s hit or miss.
The problem is the only vaguely useful test is manomerty. But the problems with manometry are threefold.
1. Positive manomerty only indicates patients who might benefit from ES and studies show only a 50% success rate of ES at best in patients with positive manometry. One researcher claims on 2 year follow up – only 8% of patients reported sustained benefit.
2. So Manomerty is only somewhat useful and predictive- false positive, or at least patients who gain no benefit from ES can occur despite positive testing about 50% of the time. However false negatives are also possible. On repeat testing of patients with negative manometry tests about 20% were later found to be positive and later benefited from ES.
3 .The procedure itself carries a risk of pancreatitus .
So we are left with testing – risking pancreatitus, cutting when only 50% get benefit – and not cutting negative testers who might later turn out to be positive. Or just going in and blindly cutting the SO and hoping for the best.
If the manometry test is negative and they don’t cut, you still have no solution to the pain and one study has shown that in patients who have the sphincter cut post ERCP there is a lower risk of severe pancreatitus than those who do not. I think it’s safe to say this most likely also applies to manometry as well. So manometry without ES likely has a higher risk than with it. So we may in fact be better off just blindly cutting.
It’s a very tough call and Botox may be a solution here. It’s not selective for either sphincter but it certainly indicates those who will benefit from ES with a high level of accuracy and low risk of pancreatitus.
Personally where I think manometry is of benefit is in checking both the sphincters. I think a main reason for ES failure is the pancreatic duct is not assessed and treated. 30% of all cases involve both sphincters and another 30% involve the pancreatic sphincter alone.
So potentially 60% of patients are not being properly treated if the SO is cut alone – this make the success numbers for ES hardly suprising . Doc Freeman reports much higher success rates testing and cutting one or both as needed and they only way to tell which one or both – other than blindly cutting both – is to test.
Most docs don’t want to get involved with the pancreatic duct as pancreatitus rates are higher and it must be stented with small soft stents using very thin guide wires which is much more difficult.
So ultimately I think you must test both ducts and treat appropriately to get any chance of success.
Another piece of research I just found by Doc Toulli is there appears to be a variety of SOD that doesn’t respond to ES. As yet they don’t know how to detect this or how to treat it. To me if you respond to relaxants like nitrates the cutting the sphincter should work as well.
So in type 111 we need far better selection criteria, cases of acalculous GB and IBS need to be detected early and ruled out. Doc Toulli uses internal motility monitors to rule out visceral IBS type motility disorders in suspect cases.
We then need to routinely assess and treat both sphincters at specialty centers. Until this happens we’ll continue to see poor success rates with type 111 and folks suffering unnecessarily from unbearable pain.
If more men got this problem the solution would have been found years ago.
Boy are you ever right on you’re comment regarding if more men had it, it would be more researched. I’ve posted before about how Dr. Freeman told me the same thing. The one thing you mention is regarding cutting/testing both the sphincter and pancreatic ducts. He said he didn’t want to cut the pancreatic ducts in my case as it could make things worse. I had very high pressures in my cbd, but he just wouldn’t go into the pancreatic ducts for the reason noted, even though I have pancreas divisum. I did really well on the new medication regimen for about a month. Then another major flare up hit and I feel like I’m right back where I was. Each one of these major episodes feels like it takes longer to recover from and I’m let wondering what it is doing to me. I really need to get in touch with him and ask more questions. Why does he say in some cases it’s appropriate to do both, yet he tells me it’s not. I’m sure there is a case specific reason why. Now I want the answer to that. As always, Brett, you have great information, facts and research to substantiate your position. I am really looking forward to your procedures, first andforemost in the hopes that it helps you. Secondly, to hope that what you learn and experience can help the rest of us. Sorry. I really don’t want to make you a guineau pig! Again, I’ve got your appointment dates noted. I will be sending positive energy your way and will be anxiously awaiting your posts regarding how your doing. I wish you the best of everything. Thanks again, for all you do for us!
Dear Kris,
I have pancreas divisum too with sphincter of oddi dysfunction and both my minor and major papilla had sphincterotomy with the minor papilla getting a temporary stent. My ducts were so small, manometry was never possible. Yes, I did go to Indiana too. But what struck me in your note was when you said every subsequent attack is worse and this is getting worse with age. Yes, in my case as well. I don’t know how old any of you are, but I’m 43 and the whole thing started when I was 37. As I read all your letters, I can’t help but wonder if any of you had Hepatitis B Vaccines and if the shot coordinated at all with your attacks ?
Thank you Shelly that is helpful information. I think if we look at the evidence just this little group brings forward. We can see genetic patterns of DZ, medication caused patterns of DZ as well as surgical causes of DZ. Now, only through researching all people who have this can we start surmising the percentages. Do women really get this more then men ? Or are men suffering in silence or numbing it with drugs or alcohol or even being misdiagnosed and being medicated without researching and analysing it further so it can be ignored ? I enjoy medical research and if I take on this task maybe a questioniere I create will be coming your way when you least expect it. It is one thing to hope for a cure, it is another thing to actively work together and find the answers.
Thanks Brett. It is quite discouraging that the options are so limited, and the available test not even very reliable at diagnosis. I was not aware that the manometry could yield false negatives. I also have read about the fact that not evaluating the pancreatic sphincter may account for the fact that many people do not improve after ES (and the reasons why doctors are loathe to go near it). It is a very tough call because we all are trained (and probably instincts are) to believe that severe pain is a sign of something very wrong and that you need to seek treatment – and here, the fix may be worse than the problem.
Were your endoscopy results normal? (I know you suffered terribly afterwards – so sorry to read about that.) My last endoscopy showed a lot of fluid in the stomach and follow up tests thus far have failed to determine why. In my layman’s mind, I wonder if it it can be connected to SOD – as the sphincter is squeezing so tightly, it can cause a back up of sorts. Just wondering if you had something similar or had any thoughts on my made-up theory.
I think you are right about how different it would be if this were a man’s problem. I cynically wondered aloud about that in an earlier post and Kris replied that Dr. Freeman said the same thing. That is a sad state of affairs. Some people point to breast cancer as a disease that gets a lot of attention and research to refute points like that, but it is sad that this is all anyone can point to (and perhaps this is unfair but we are not seeing a cure). I think when women have symptoms that defy traditional diagnosis, they are just too quickly written off.
I really hope that your procedure goes well for you.
BTW I visited Australia almost 15 years ago and did not want to leave! I had too little time there and was unable to see as much as I would have liked. It seems like it would be a wonderful place to live. Of course, ugly American that I am, I am not sure I ever would get past feeling I was on the opposite side of the world from everyone!
Hope you are having a good week. Please keep us posted on your progess.
I don’t know about ugly Americans. I got treated (not medically) better in the USA than anywhere else I have ever been, including Australia – the people were wonderful. This in in one of the supposedly worst places – Detroit Michigan. Mid west hospitality is real. I still write to friends there 15 years later. I think Americans get an undeserved bad wrap by people who focus on the negatives only.
My endoscopy found nothing really – just some heal thickening around the esophageal sphincter from GERD treated with PPIs. They took some biopsies and found no celiac or other problems as well. They did only get to D3 though.
Manometry can definitely give false negatives. Much the same as blood enzyme testing. The is why they try and do the blood tests at the time of an attack. It’s a bit hard to do the same with manometry testing so the sphincter may not be spasming at the time of testing. Also medications can influence sphincter pressure.
One specialist told me I didn’t have to worry about the pancreatic sphincter because my enzyme levels were normal. I didn’t bother to say the same tests for the liver enzymes were normal as well so why assume one is a problem and the other not on the basis of no evidence for either?
In the video Doc Freeman says the patient had pressure levels of 180 in the pancreatic sphincter – then clearly states enzyme levels were normal and she is a type 111. He cuts both then states she has about a 60% chance of relief. So obviously he believes the problem can occur without elevated enzymes or dilated ducts and I’m inclined to believe him.
There was somebody here a while back with stone blocking a duct and still the enzyme levels were normal.
Well I’m leaving for SA today and won’t be online again for a while. I’m nervous already. Thanks everybody for the kind thoughts.
Ok. Just on a fun note. Living in Minneapolis, the heart of the Midwest in my book, I have to say that it is true that Midwest hospitality is the best! Seriously, Brett, if you ever want to come here and see Dr. Freeman, I will do everything I can do make your visit as easy on you as possible. I am more than happy to help coordinate appointments and anything else that will make your visit easier for you. However, I know that you have your appoitnments in SA next week. I am hopeful that you experience good results and will be looking foward to hearing how everything goes for you.
My nightmare began June 2004, exactly 90 days after my first Hepatitis B vaccine. I developed right upper quadrant pain just under my right ribcage. After a painful ultrasound and hida scan, nothing was determined and in 3 weeks or so it went away. 6 months later, December 2004 it came back with a vengence after eating fatty food. After numerous ER visits and another Hida scan , it was determined, that my ejection fraction of my Gall Bladder was too low and my Gall bladder had to be removed. I HAD NO STONES OR BLOCKAGES / PERFECT LABS / PERFECT CAT SCAN. But I was told I could have Sphincter of Oddi disease but I was only 38 and too young for an ERCP in absence of findings on tests. Basically I was told by a professor of all the GI’s at the hospital that my Gall Bladder was failing and had to be removed. So, it was removed January 2005. 24 hrs. after I got home from the hospital, I had to return to the ER with severe pain in the same spot. I had a leak of bile into the FOSSA where the gallbladder was. With antibiotics I was sent home again. 3 ms later I had my 2nd Hepatitis B vaccine. Had trouble moving my arm and fingers for the next day and remembered the experience from the prior year. 1 ms later I had my 3rd Hepatitis B vaccine and noticed tea colored urine and yellow stools, the next day. Thought it was something I ate and left for India for 2 weeks. 1 month after my return from India (Aug 2005) I came down with pneumonia. On my 10 day checkup my right upper quadrant area was painful upon examination. Figuring it was a reaction to the recent medications, I figured it would go away. 1 month later, I arrived in the ER screaming like I never screamed in my life. With the same pain in the same area only this time, boring through to my back and radiating up to my right shoulder blade.
I vomitted dark yellow bile and was sent home after Dilaudid was administered a couple of times. ER tests were inconclusive and I was told to follow up with my GI.
I was admitted for an 8 day hospital stay, 2 of those days starved in preparation for an ERCP which was cancelled again due to risk of pancreatitis again now that I was 39 and again all tests were inconclusive. A couple weeks later an MRCP showed an inflamation of the pancreatic head, but all other tests showed normalcy. I was tranfered to a liver specialist at another hospital. Who after hearing just 2 sentances of my story said, “I’m not a pancreas specialist, but I’ll find you the best one I can”. I was transfered to a 3rd hospital and finally told I had a congenital difference that 7% of society had called Pancreas Divisum (Where the dorsal and ventral ducts do not fuse) but I would be maintained on RX Pancreatic Enzymes and have check ups with MRI’s every year. BY NOW I HAD LOST 30 LBS. AND WAS UNDERWEIGHT. I figured out that eating no fat was the only way to survive at this point and very slowly started adding fat into my diet. By now its March 2006. I decided that since I was the one who realized it was my pancreas and what diet I should eat, I started medical school. By July 2008, I had another very serious attack and with my recent 2 years of training, I understood that my problem could only be a problem with the sphincter of oddi or its partner the ampulla vader. I met a 3rd GI professor and told him my story inbetween crys of pain and he suggested Sphincter of Oddi Dysfunction. I was now 42 and let him know he confirmed my suspicions. We scheduled ERCP and a sphincterotomy of the major papilla and I had immediate relief and ate normally for 4 ms, before the positive effect wore off. My GI did not have a full understanding of my particular problem, so I went to a hospital which specialized in these abnormal pancreas presentations in the midwest. They had a phone consultation with me, then I did an in person consult with a physician GI pancreas specialist and then the next day, they performed a sphncterotomy of my minor papilla with a stent placement to be taken out in 10 days. This was February 2009. I suffered a pancreatitis attack with elevated Lipase the following day as I was driving home, with severe pain above my xiphoid process and thought I was having a heart attack. Went to an ER and confirmed the post ERCP pancreatitis attack. Had the stent removed and was back on enzymes to eat, but now could eat more normally then just pretzles.
Had a nuerological disease resembling MS begin the next month and used Nuerontin to diminish the parathesias and walking difficulty all summer and basically could eat anything I wanted with out enxzymes, But gained 10 lbs and stopped the Nuerontin in August 2009.
October 14th,2009 had another attack with a hospitalization lasting 3 days. All tests came out normal, and my GI decided a celiac ganglion nerve block would be the only solution for me to no longer feel this pain for a short while.
I had to wait 2 weeks to meet with the pain management team and another 2 weeks for my injection, which was planned to be steroids and lidocaine and would only give me a couple of weeks relief.
The next day I remembered a bottle of RX Ursodial which helped me when I had my very 1st spincterotomy and I took it with a small dinner. That was 1 week ago. I’m able to tolerate small meals 3X/day with very low fat content. I burp a lot, but no acid reflux. I slowly have been getting my life back and yes I graduated medical school as an Acupuncturist. I still take pancreatic enzymes as well with each meal , but thankfully I cancelled the celiac ganglion nerve block.
You’ve been down this horrible path, too. I just posted a reply to Margie that you can read if you’d like. I also have pancreas divisum. I’m SOD II, but got no relief from the ERCP with a temporary stent placement. This was done in July. I’m glad to hear that you cancelled your nerve block. Dr. Freeman at the U of M, who is my doctor, told me under no circumstances to ever have one as they only make it worse.
You noted that you graduated medical school as an Acupuncturist. Have you had this done yourself? My pain mangement doctors as advised me to have acupuncture. I’m looking for one who will accept my insurance. Have you had success? I am also working on hypnosis with the social worker at the clinic I go to. I have found that it does help me to relax. I will be seeing her again next week.
Thank you Kris,
Yes your wish came true I did have a pain tolerant day ! I sucked on little pieces of candied ginger and it quelled nausea and discomfort. I attended a party and went to the matre de` and explained that I could have no Grasso (Fat) and he took 5 minutes with me and we developed a little special menu for me. I thanked him profusely and really enjoyed the food. I could have a plain veggie salad, pasta w/marinara sauce and steamed mussles in white wine ! I even had 2 garlic knots ! Sorry I got carried away. In answer to your question, I have acupunctured myself and taught my significant other how to place needles in special pancreas spots in my back. He rose to the occasion! Yes I was pain free for a couple of hours and able to think clearly enough to remember my Ursodial RX Bile salts and I was immediately on the road to recovery. If you are ever in Queens, NY I will welcome you and treat you !
That sounds like a fabulous meal! I read your post to Melea. What a beautiful message. I live in MN, but have a good friend who lives in MD and his mother lives in Queens. We’ve visited her before. I think I should contact him and make arrangements to visit you sometime. I would love that. i’m glad your significant other is able to help you. You’ve encouraged me to get off the dime and make my appointments with an acupuncturist here. Thank you so much for that. Let’s stay in touch!
I have just read the posts about the Hep B vaccination. I had one 15 years ago because I was teaching in the public school system. I was sick with each one and kept asking if I could be reacting to it. I was assured I was not, so like a fool I kept it up. I totally collapsed after the third one. I threw up for 6 months, could not hardly keep water down, became extremetly senstive to all meds, chemicals, etc. After 9 months they finally took my gall bladder after I started itching all over and throwing up green. It did have a couple of tiny stones. When I did not get any better, I had to go to Denver for extensive testing and was told I had Chronic Fatigue Syndrome. Three years after that I was told I had Fibromyalgia when the pain started. I have been ill ever since. I spent almost 3.5 years in bed and too weak to do much else other than shower, dress, and do a little cooking. After using numerous alternative therapies, I finally could go back to work part-time tutoring. Things calmed down and were not so bad until my major attack 3 years ago when they clipped the sphincter muscle. The common duct had spasmed so hard it sucked my intestines into it and was completly blocked. One year later I had another major attack and it has been small ones ever since. I have been having at least one bad attack since June of this year and can’t get things to calm down. One of the doctors I saw in Denver blamed the whole mess on the shots, but it was too late by then. I was fine until I had the shots. I am turning 59 in two weeks and this mess started when I was 44. My life was never the same after those shots and I still kick myself for not listening to my own body. I sure do now.
I have never had a Hep B vaccination but I have had so many bad, reverse reactions etc. to various medications, vaccines that I vowed several years ago to never ever have
a flu shot, vaccine, whatever – and I have been just fine – thank you very much !
I really do sympathize with you and others when I read stories such as yours above.
I don’t care what the health SO-CALLED “professionals” say when they state it is
impossible to get the flu, etc. from their vaccine. I AM NOT GOING TO HAVE THEIR
SHOTS to satisfy them – and so far so good ! ! ! ! (Knock on Wood) Ha
Sending My Very Best Wishes & Prayers to All Of You !
Dear Donna,
If you are sick because of the shots its not too late to help someone else. Those shots are the same which are being forced on 1 ms old babies. So, whatever can be done will be done, but of course we can stick together to get answers. I’ve decided to create a survey for all men, women & children who have this and will get started on it tomorrow. Then I will ask your treating physicians to distribute it to their patients. They can send them back to me. I’ll compile the research and report back to all. Maybe we could even get a grant to help with expenditures. Its all possible and it all has to start somewhere. Clinical Trials have their place, so does statistical research. It seems that we are lacking this intrical part. How many people have this in our country alone? For starters I’d like to have a conversation of your doctor in Denver !
Nymphaea
After reading yours and others post about having a Hepatitis B shot, I called the health department where I got my shots. I really had no idea how long it had been. I gave the lady my name and she called me back with the dates, Oct.7, 2005 for 1st shot, Nov 18, 2005, 2nd shot and April 25, 2006 for the 3rd shot. I then came home and got some infor on Drs. visit and so on. My problems started in April 2006 and I was scoped by my GI Dr. June 26, 2006 and then on with test and procedures. I really wish I knew if those shots had anything to do with this nightmare I’ve been living for three years.
I post from time to time on this site. I was diagnosed with SOD Type II about a year and a half ago after having my gallbladder removed. I was referred through Kaiser in Northern California to go to California Pacific Medical Center in San Francisco. Dr. Binmeuller (sp?) is an excellent doctor. He does ERCPs all day long. I have had 3 ERCPs. On the first attempt, he placed a stent. I went back two weeks later and he did a sphincterotomy. Woke out of the procedure saying,”pain” I don’t know what was in the injections but he kept checking on me and asking the nurse to give me more shots. The nurse was concerned about how many shots she was giving me. Fortunately, it got me out of pain about an hour later. I was pain free for 8 months or so when it started to come back and another ERCP was scheduled and successfully relieved the pain once again.
I am starting to get that tightness again like a balloon and I am bracing myself, yet hoping that it doesn’t return. I’ve tried a lot of meds that don’t work. I will look into the nitro spray that was mentioned on this site.
I also have a large hiatial hernia and I’ve been getting this pain that feels like my stomach is flip flopping. I am grateful that it ceases within a few seconds but it stops me in my tracks. I suspect it is from the HH sliding back and forth. Does anyone else get this?
I too get the flip flopping feeling. Mine is above my stomach, between my ribs. I contribute it to the sphincter spasming. I have had multiple ERCP and sphincterotomies done. The flip flopping feeling changes with each procedure.
I have a moderate sized Hiatal hernia, along w/ SOD, the hiatal hernia is a genetic trait that both my grandmas share, but no I have never had this sliding feeling you speak of. An integrative health practitioner once told me to drink 1 quart of warm water w/ lemon down in subsequant gulps and go up on my toes and down to my heels and do this “drop” 3 times. Well it works tremendously well to get the stomach to slide right out of the diaphragm !
It’s great to hear that you’ve had such success from your ERCP’s and the stent. I had my first one in July, with a stent. I’m also Tye II. Unfortunately, it didn’t work. Dr. Freeman, my doctor in Mpls doesn’t want to do another one so I’m in the pain and nausea management mode with varying degrees of success. I don’t have the HH and haven’t heard of others having it, but that certainly doesn’t mean they don’t.
I’m sorry to hear that you’re getting that lovely ballooning tightness. I hope that it goes away soon and you continue to stay pain free.
Thanks for posting. Please let us know how you continue to do.
I can’t believe what I just read about Hep B shots. I too work at a school and work with special needs children. Three years ago I had the Hep B shots and not too long after is when I started with the pain. It has aways been in the back of my mind but I never said anything. I would love to really check this out. I have been in pain for over three years and go to pain management. I’m on Levsin, Protonix, Nortripyline, Tramadol and have been on a little of everything, but these seems to work the best. I still have pain everyday, but better than I used to be. This site really helps me, knowing I ‘m not a lone.
I represented myself Pro Se in a vaccine case for 3 years and had to drop it because I was the only one in this country and w/o no precident, there was no case and no attorney to go forward with. But I will support the case of anyone else this is has happened to in person in Washington if need be. This is what I told the Doc who was the “expert witness” in Phili. I know this happened to me & I know I am not the only one.
Robin, What a small world ! I had my first Hep B shot while working as a supervisor & medical liasson for 2 group homes for the developmentally disabled and followed up with the remainder 2 shots while working with multi-handicapped 3-5 year olds just weeks before a previously planned trip to India. I hesitated to get the remainder 2 shots because something in my gut was telling me not to, but when I was told by a nurse that Hep B was rampant in India and that I could easily bring it home to my family, I completed my shots. Thank you for your honesty, now I’m not alone either.
I was just told at Mayo that the doc believes I have SOD. It took 6 months to get to Mayo because no one believed I was in such pain. I went to 4 differnt GI doctors before I got to Mayo. At first my blood tests were normal. Over 6 month period I had US, CT Scan, HIDA Scan (delayed drainage), MRCP which were all normal. Doctors laughed at me literally when I kept saying how much pain I have been in,a nd then my lipase started getting a little elevated. GI doc said ’so what?’ And told me to come back in 6 months. That’s when I was able to get to Mayo. In late Sept, they repeated blood which showed slightly elevated amylase and lipase. Then they did secretin MRCP which showed delayed drainage of pancreas. Repeated blood again and the amylase and lipase were still elevated, and so they did a secretin EUS. That was normal. The doc who did the secretin EUS said he watched it drain himself and it was normal. He also said I had undiagnosed abominal pain and to follow up with the other doc at Mayo who I had originally seen (a pancreatic/biliary specialist). They scheduled me 6 weeks after the EUS so I thought it must not be serious, otherwise why would they make me wait so long for a follow up. So, I went in after 6 weeks following the EUS and the doctor said he thinks I have SOD due to the drainage issue on HIDA scan, S-MRCP and the blood work. He gave me pancreatic enzymes, and I have recently started taking calcium channel blocker for chest pain and was told this could help SOD. The doctor said they do not recommend ERCP due to risks and that I shoudl hold out until they perfect the botox. Well I understand that they think ERCP could make my condition worse, so I’m not pushing for that, but how can someone at Mayo tell me I have SOD and then say come back in 6 months without giving me any direction or help? I can’t work. My pain is constant, though it is less during the day and when I’m moving around. I’m not throwing up and have mild nausea occasionally. Oh, and they told me I can’t have pain medicine because it makes the spasm worse. Well what is someone like me supposed to do. I’m in terrible pain but can’ t take pain meds. This is debilitating and there seems to be no hope.
Hi Margie -
Wow ! These docs are pretty hard to take aren’t they ? telling you to just come back in 6 mos, no pain meds ordered, nothing ;( How Ridiculous ! ! ! ! ! ! ! !!
I am one of the more fortunate one’s in that it was pretty easy to diagnose me with
AP since I developed it immediately following ercp, as in “hospitalized in the ICU
and ALMOST DIED.” I had an Idiot perform the procedure and am very fortunate
to have escaped with my life. Unfortunately he was such an Dinkledorf that he
didn’t diagnose me correctly which would have been “Papillary Stenosis” and
so I spent the next 4 years simply taking Nexium for GERD and just “dealing” with
the nagging pain until October 2006 when I was assaulted w/another case of
AP. It was then that my AP became chronic, or so I thought until I became fortunate enough to find Dr. Marty Freeman (MN) who correctly diagnosed me with Papillary Stenosis (Biliary I/SOD I) who did a sphincterotomy and stented my pancreatic duct X 2 wks.
Now prior to seeing Dr. Freeman I saw Dr. David Sutherland (the doctor who developed the tp/iat in the 70’s) and who recommended the tp and it was at that time I started taking the pancreatic enzymes. THOSE (the enzymes) were my “miracle” and so I recovered enough that Dr. Sutherland’s administrative assistant, Ann Marie Papas suggested that I see Dr. Freeman and to whom I finally entrusted to do my ERCP last February 2009 which has helped CONSIDERABLY! I only wish that I could have run into him way back in 2002 – that, however is history and
I am feeling SOOOO much better
It sounds like your diagnosis is SOD II and I think it would be a very good idea to see Dr. Freeman or another good GI guy who can help you, certainly prescribe
some pain medication that would help alleviate your pain. Opiates are known to
cause SO spasm but there are others such as Tramadol (which I take on a prn
basis) and there are other pain meds that can help also.
There is hope, believe me and if hindsight could be 20/20 I would have allowed Dr. Freeman to do my ERCP immediately after his recommendation AND I WAS
(and still am) AT VERY HIGH RISK OF POST-ERCP ACUTE PANCREATITIS.
I wish you well and if you have any questions at all please do not hesitate to ask.
Thanks so much for your information. I have been in tears every day because no one seems to understand how hard this is. I look ok on the outside, so people think I’m fine. I can’t sleep on my back anymore because it hurts too much and I wake up in the morning with the worst pain of the day. I can’t do the things I used to, can’t eat the things I used t etc. everyone here knows the drill. I’m sure I’m lucky in that it isn’t worse than it is. I read some stories on here and just feel so bad for everyone.
I just don’t understand how doctors can be so stone cold when it comes to this. Do you know any more about the botox for the muscle? From what I understand, it is still experimental? What the Mayo doc was saying was since I’m not in the situation where I’m throwing up all the time, the risk of ERCP is greater than the potential benefit. They do it there and I had a long talk witht the doctor who actually does it. His recommendation was the same. I’ll look into Dr. Freeman, but I actually did trust the Mayo doctors. Don’t get me wrong-they were competent. They just didn’t give me any other option other than have the ERCP or suffer.
It sounds like you have been through heck (the kind spelling ) and I appreciate you taking time to respond to my post.
My heart just aches for you because I really do know the pain that you are experiencing ;( I said that I am much improved and I am, BUT ……….
I also am not able to lay on my back or my right side without feeling the awful pain and pressure. I also do not throw up ( only on a few occasions over the
past 6-7 yrs ). The Mayo doctors may know a lot but the pain that you are
having is biliary/pancreas pain and this pain is likely causing harm to your pancreas, possibly damaging it further and unlike our liver, the pancreas is not known to heal itself.
How long have you been taking the enzymes and which ones are they and their strength? Enzymes are so very important in protecting your pancreas
so that it does not have to work so hard in digesting food. Have you experienced malabsorption (undigested food)? Have you lost weight ? I
have suffered from both, losing +/- 100 lbs over the course of 12-15 mos.
and it was the enzymes that started allowing me to eat again (no more than
10 gm fat/day).
Do you live in Minnesota ? If so, WoW, then please call Dr. Freeman for a
consultation. ERCP does carry a huge risk but then damage to your pancreas
is not the right alternative either. I think that Dr. Freeman is one of probably only a handful of doctors whom I would trust doing the ERCP and believe me, it took LOTS to be confident enough that he could get me through another ERCP and not cause AP. I also know that if he thinks you are at great risk of AP due to ERCP, he will tell you.
Please keep in touch and let me know how you are doing, as well as hopefully
contacting MF for a consult.
I’m in AZ. I can’t imagine losing/gaining the weight and going up and down like that. Must be so hard. I have not lost any weight. Not to be too graphic but have had intermittent floating stool. That seems to have stopped since I began the enzymes just over 1 month ago. Viokase 16.
I’m glad I found this site. It should help me in getting more information and getting help. Thanks!
I’m so sorry to hear of the awful journey you’re on to get diagnosed and treated correctly and fairly for this disease. I call it the invisible disease, because, like you, I look fine. I’ve lost a little weight, but not much. I’m nauseous nearly every day and am also in pain every day to varying degrees. It’s hard to pinpoint the trigger foods, but I know for sure that I can’t eat any processed foods, even if they are noted as organic. High fat foods are out, too. Other than that, I can eat something one day and not feel too bad, yet the next time I eat the same thing, I’ll have awful pain. Like Christie, I can’t sleep on my right side or back.
I’m SOD II, diagnosed via ERCP in July. I live in Minnesota and am so fortunate to finally have Dr. Freeman as my doctor. Like you, I went through a couple of GI drs. before getting to Dr. Freeman. I lucked out with the 2nd one in that he used to be Dr. Freeman’s partner at the U of M before leaving to start his own practice. After ordering every tests under the sun with everything coming back normal. (To this day, my enzymes have never been elevated, in fact my amylase is typically super low). Anyway, he suspected SOD and sent me to Dr. Freeman. Also like Christie, I cannot say enough good things about this incredible man. In addition to being one of the most experiienced doctors in performing ERCPs, he is also very compassionate. He told me about a month ago that this disease is primarily a women’s disease, so there is little research that has been done. There is a 5 year study being conducted now called EPISOD at 6 different universities around the country. The U of M is one and the only one that is not accepting new patients for participation. Dr. Freeman told me that he is doing everything he can to educate drs. about this disease because there are so many that don’t believe in its existence and don’t understand it, so they don’t know how to treat it. He told me that I wouldn’t believe how many drs. there are who tell a patient they don’t need another test or procedure due to their own arrogance in not knowing how to address a condition. If you have the means to do so, I would strongly suggest getting on the next plane and coming to the U of M to see him. He will help you.If he feels ERCP won’t help you, he won’t do it. He said he won’t do another one on me to address my pancreatic ducts because he feels it would be more harmful than beneficial. I have a condition called pancreas divisum, which means by congenital birth defect I have 2 pancreatic ducts vs. one. I’m not sure, but this may be why he doesn’t want to go back in. Consequently, I’m now under the care of a doctor in the Palliative Care Center at the U of M. This doctor is also incredible. I feel so fortunate to have both of them. I am also one of the fortunate ones who can take opiate medications. I take Oxycodone, Lyrica and also have an NSAID patch called Flector that I wear under my right ribcage every day. The regimen of meds helps, but I still get a bad flare-up every couple of months. It seems to take longer to come out of them each time they happen. I’m going to ask about the nitro spray that I’ve read about other having success with at my next appt. at the Palliative Care Center.
I’m so sorry that you had to meet us this way. Believe me, you’re not alone and unfortunately, your journey is very similar to most of us. You will find alot of support from people on here. It has made a huge difference in my life.
If there is anything that I can help you with, please let me know. If you would consider coming to MN, I can provide you with contact information to get your appointment in a private email. Just give me your address.
Oh, I wanted to tell you that I was on vacation in Phoenix last year and ended up with an attack. I landed in the ER at the Scottsdale Medical Center. The GI dr. that I saw there was great. If you’d like, I can dig up his name and give it to you. At the time, my diagnosis was abdominal adhesions and my dr believed that I go through partial, intermittent bowel obstructions, which can be true. It was the dr. at the Scottsdale Medical Center who first suggested that this was not adhesions, but gallbladder related, even though all of those tests were normal. What I liked about him was his comment that tests are subject to the person performing them and the person reading them. To me, that mean s he’s open minded. He was also very compassionate.
Margie,
No need to fear the graphics. It’s the lack of details in such conversations growing up with our families, friends and doc’s which caused ignorance . Floating stools, which are yellow, gold or white and oil slick in your toilet water is called Steatorrhea, simply means you are passing fat. This is a wakeup call for malabsorbsion. Vitamins A D E & K can not be absorbed into our bodies if we don’t absorb fat. Also this adds to obesity in some people. The body thinks its starving so it holds everything without burning it off. In others it causes anorexia, Pancreas / Bile duct/ Liver DZ . An acupuncturist will ask you very specific details about stool, menses, sexual questions etc because we look at the body as a whole and we seek to find patterns based on a 5-8K yr old system and treat accordingly.
Tramadol, Demerol, Dilaudid, Morphine, Hydrocodone, vicodin, Oxycontin, Fentynyl are ALL Opiods & Opiates I know, because I am allergic to the whole bunch causing me to have Basilar Artery Migraines w/ stroke symptoms which turned into a seizure w/ Tramadol ! They are also all know to cause Sphincter of Oddi Dysfunction.
We share lots in common then – allergic reactions to opiates and Yes, Tramadol is an opiate and is classified as an opioid like morphine but the chemical structure is significantly different from the structure of Morphine.
Anyway, that being said – it really is awful isn’t it, having such awful reactions to these meds that offer pain relief to so many others ? Actually, I consider myself fortunate because if I had been able to tolerate them, I would most likely be a drug addict by now.
My 1st experience with Morphine was when it was given IV for my post-
ERCP acute pancreatitis – Uuuuugggggh !
For reasons unknown to me I am able to tolerate Tramadol and although it
isn’t a great pain reliever, it does take that severe edge of pain out of the
equation.
Its been awhile since I have posted. But I see that dr sutherlands name has been added. Dr Sutherland has taken interest in my case, he wants me to have an ERCP done which I finally agreed to, that will be done this Tuesday. I am worried about getting post pancreatitis. dr sutherland wants to do the tp/iat in dec/jan he said “when the ERCP fails” we will book the surgery date. its interesting the hoops we must go through.
I also see dr joel carter in palliative care, he is great and would suggest him to anyone. I will warn that is schedule is pretty full but if you have a dr call (sutherland did it for me on his own) and asked to see me asap. Dr carter put me on the flector patch and fentanyl patch. They don’t work 100 percent but they do help. I am on TPN and can’t take anything orally that’s why I’m on patches and iv meds. But I would look at dr carter if you need help with pain, he knows what he’s talking about.
Hi Melea -
I am sorry to hear that you are continuing to have pain but at least you are consulting with the very pioneer of the tp/iat (Dr. Sutherland). Who is going
to do your ERCP? Dr. Freeman did my ERCP and although I am at very high
risk of post-ercp AP, I got through it, as well as sphincterotomy of the cbd and
stent placement in the pancreatic duct. He even told my husband and myself
just prior to the procedure that he would “quit being a doctor” if I developed
AP, and that’s how confident he was that I would be okay. (Some would
likely call him Arrogant to say such a thing) Ha. But hey, I got through it
with sailing colors and although I still have some pain I am so very much
better and I would not hesitate to have another (as long as Dr. Freeman does
the ercp
Dr freeman is the one doing the ERCP. I find it surprising he said that to you. All the times I’ve seen him he has never stated anything like that to me. How long were you in the hospital afterward?
are you taking any meds?
Thanks for the support. I hate being 20 and not being able to good to school, work and just go out with friends.
I also see Dr. Carter. You are right. He is wonderful! Dr. Freeman called for me so I could get in to see him. He’s busy! I have the Flector patch, too. You’re right on that, too. It helps some.
I saw in your other post that Dr. Freeman is doing your ERCP. You’ll be in good hands. I hope that this helps and that there is a possibility to avoid the TP/IAT.
Kris: Sorry to barge into this thread bu there was no reply button where you answered my comments above. First, thank you for telling me your story. I have felt so alone in all of this because either friends and family don’t believe how much pain Iam in or they just don’t understand. I had one doctor roll her eyes and say “oh, it’s just so terrible isn’t it?”
So because it is primarily a women’s issue there is little research? I’d get mad but I can’t waste the energy. I just cannot believe how badly doctors have treated people on this board. You know, I’m sure some people just give up and live with this. After being mocked and told it is all in your head, it can really get to you. I’m happy I found this page and resources to get help.
If you want to forward the name of the doc you saw in Phoenix, please do so.
I cannot believe a doc would tell melea “when the ercp fails….” but then again after dealing with these doctors, I wouldn’t be surprised to hear them say anything. My prayers are with ou melea.
Hi! I went through my stuff and of course that’s what i can’t find. It was a Spanish name and i think it started with a G. Really helpful, huh? I’ll keep looking. It is hard to sometimes reply to posts and then to find the replies, too. I always look under “Recently Posted” to find the new ones.
Yes, I would have to say that everyone of us have been badly treated by doctors on this site. Unless you live it, it is hard to understand. This site has helped me, too. There is another one called “Sphincter of Oddi_Pancreatitis on Yahoo groups. Some of the people from here also participate in that group. There are alot of really helpful people there who share alot of info. It is run by a nurse who also has this.
I hope your day has gone well. I’ll keep looking for the info about the doctor.
I will be leaving for Charleston, S.C. in the morning. I have an appt. at MUSC with Dr. Peter Cotton on Monday. They have already scheduled an ERCP for Tuesday should he decide he needs to do one. I asked when they called with the appointments how do you know I will need an ERCP? and his nurse told me it is easier to cancel it than to work me in for one. Charleston is 3 hours from my home, so it isn’t too bad of a drive.
It is my understanding that Dr. Cotton is who brought the ERCP to the USA. He is also the doctor who is heading up the EPISOD clinical trial. So I feel like I will be in good hands.
I am basically posting to ask for everyone’s prayers that I will be rid of this pain and not suffer from post ERCP pancreatitis. From the posts the last few days, it seems there are several of us possibly having ERCP’s next week. Me, Brett and I don’t remember the other person’s name. Please keep us in your prayers and when I am able to get back home I will let everyone know how it went.
You have my prayers!! Please let us know what happens. I guess I’ve almost given up seeing a Dr. The last one was at Johns Hopkins, feel like he patted me on my head and sent me home. I still have pain everyday of life, but I think I deal with it better because I’ve had it so long. At first I thought I was dieing, but now I know it’s a everyday thing. Good luck, I hope this Dr. is a God sent, we sure could use some hope. Stay in touch, Robin
I’m so sorry that you haven’t found a dr. who will help you. Are you able to travel anywhere else in the country to see a dr.? This disease just sucks. My heart goes out to you and the others who haven’t been able to get the proper care. It’s so wrong!!!! I know that I thought I was dying for 2 years until I got my diagnosis. It’s a relief to have one, but I’m still struggling to get my head around the fact that it is an everyday thing and will be my life going forward. I’m really grateful for the 51 years that I had without this condition. I feel really bad for those that are young, living with children and trying to cope. Poor Melea is only 20 years old and is even on TPM, potentially facing a TP/IAT. This site offers so much support. I’m also grateful to still be working, although there are many days when I get home and just say “whew” I made it through another one.
Hi! Melea is also having hers done on Tuesday. All of you will be in my thoughts and prayers! I’ve read lots of positive comments about Dr. Cotton, so you’ll be in good hands. I’ll look forward to hearing how everything went when you’re able to post again.
Melea,
You are going ahead on a healing journey. We along with your family & friends are sending you messages of Light and Hope. Deep within this horrible disease is a gift waiting to be opened. You may not be out “partying” with your friends and ahead of them you will learn how shallow drinking, smoking & drugs are. You may not be eating the typical “American” diet, but by the age of 30 people will be telling you that you still look like a teenager, because your diet will consist of whole foods, seafood, grains, fruits and veggies and you will be able to someday have chicken and turkey and your Mantra will become one word MODERATION. You may take up Yoga, Tai Chi, Qi Gong or even Bellydancing and begin to learn about your body’s resilence and your own healing energy that resides deep within you and will never leave. You will reach out to alternative health care providers like herbalists, chiropractors and acupuncturists and you will discover that you alone have the ability to heal yourself and the practitioners that you feel drawn to are the catalysts to your healing process. When we draw the card of illness, it is two fold. Society points fingers of blame, or turns it into the gossip of the moment, or questions why you are not like the rest of THEM. But in your beautiful wisdom, you will stand tall and know that all things happen for a reason. Anger, Fear & Sorrow were never a part of our creation and they are therefore not a part of us. We can feel them coming, appreciate them, listen to the lessons they teach and let them go.
So, go forward Melea on your healing journey and share it with all you know, because you will be able to share your strength with others.
Thanks Kris, but I’m still trying to navigate the site. I read your letter on my e-mail, but I don’t know how to find it on the site. OK, there are a couple common abbreviations I’m not familiar with and was hoping you could straighten me out. TP ?
TPM & TP/IAT. Thank you for validating my heart. I wrote to Melea the things I would have said to my own daughter who is the same age.
Hi! It is hard to navigate on this site. My email address is krisl1204@yahoo.com if you’d like to communicate directly with me. TP/IAT is a total removal of the pancreas with islet cell replacement in the liver. It’s a very, very tough surgery. I think the TPM that is referenced is TPN, which my understanding is that nothing can be eaten by mouth and that it is a feeding tube. I may be totally incorrect, but that’s how I understand it. Please feel free to email me. I’d love to hear from you.
I've been blogging here since January 2003, on whatever topics are in front of me at the moment.
Lately, I've been focused on nonprofit technology. I am Vice President of Operations of C3: Colorectal Cancer Coalition, a nonprofit organization I helped start in 2005.
I live in Southern New Jersey. I've been married to Eric Sohn for 15 years, and I'm Mom to two great girls.
When I'm not online or chasing after kids or our new puppy, you can probably find me knitting.
{ 1704 comments… read them below or add one }
← Previous Comments
Just a little update on my SOD. Still the same, pain and meds. Every time I say something about maybe going to a different Dr. or having more test, my pain management Dr. says I should be thankful I have medicine for my pain and I’m able to work and have a life. Yes, this is true, but no where near the life I use to have before the SOD. I don’t know what to do any more.
I have put my comments on this site about my SOD, if you get a chance read the article…… There is hope for SOD. I know, I had the procedure done, twice. Only because the doctor did not clip the bile duct muscle enough the first time. I would recommend him to anyone. I was surprised…….
I have had what I thought was just stomach problems for about 15 years. I do have gurd, but that wasn’t my whole problem. Last June 2008 I was told by my family doctor I had pancreas cancer. From what the liver blood test results told, a CT and MRI…… This was diagnoised. I live in Michigan and with Blue Care Network insurance, I had to have everything done in Michigan. UGH!
So then the process began, an ERCP had to be done. My gastro doctor could not get into the liver or pancreas, too much swelling, so he figured I had cancer, too. So I was sent to a doctor in Grand Rapids Michigan for an Endoscopy ultrasound. This showed nothing wrong. I was overjoyed……. What a mistake my family doctor did for getting me and my family all upset……. By the way, I did dump him for my family doctor.
Anyway, I still had the pains and found out that the narcotics just made it worse. I was then sent to Ann Arbor University Hospital for what was suppose to be more tests….. I went to see a Dr. Ulmunser, probably misspelled. When I told him the pain problems I was having and the numerous trips to the ER, he said no more tests, he was positive it was the Spincter of Oddi. He told me he was going to fix it. I went into the hospital outpatient last October 2008 and had the procedure done……. It lasted one week…. I thought oh my I am cured….. hee hee NOTTA So I called him up and he told me he would go in again and clip some more of the bile duct muscle. He clipped all but one inch, fearing he might clip an organ so that is all he could do without putting a stent into the bile duct. That would be the next step.
I was given Tramadol and Torodol for pain. Those did not bother me like Morphine, Viacadin, anything with Codiene in it and all the narcotics that were tried.
Here it is a year later and I have only had to take pain meds about 6 times. No ER visits for this problem.
But I am starting to have some problems again so I am seeing my gastro doctor this week. He is the one that thought I had SOD. He changed his mind about cancer after all the tests were done, thank God for him…….Hopefully it is not the SOD again.
I hate the University of Michigan, but it is probably just my insurance. My gastro doctor wanted me to go to the University in Indiana but I couldn’t because someone could fix my problems here in Michigan. HMO insurance is BAD. But I will have it until I go on Medicare and I can have another supplement insurance then.
But there is hope out there for SOD. Just keep trying.
By the way, I think my liver enyzmes were elevated from taking Vytorin. Thank goodness for that or they would have never did any tests at all and I would have been still been suffering. I did go off all chlorestrial meds, but I wish I had the nerve to start taking them again, I need something for chlorestrial, it will be my heart next.
Just look up some good doctors that deal with SOD. There are about 5 good places to go if you have the right insurance. Good Luck…… If you do email me, put SOD in the subject please…..
Thanks for your story Janice. It’s great to here that ERCP can work so well – but unfortunate it only worked for a year. You’ve also helped me to decide that a trial of tramadol may be worth the risk of a flare up.
I’ve seen so many patients given a dire diagnosis only to find out things are OK.
I was recently diagnosed with pulmonary fibrosis and asbestoses (possibly following asbestos exposure in dentistry) from a CT scan I had for the abdominal pain.
I went to the pulmonary specialist and he said it’s mild scarring only – lots of people get it and it’s not fibrosis or asbestoses at all. A week later I had a patient get a thoracic CT scan – on the report by the same Doc was the same thing – mild scarring.
In these days of litigation docs need to report every possible minor thing to avoid lawsuits.
If you have GERD I’d be real careful with torodol – it’s a powerful NSAID that can really do a number on your stomach. You’d probably be better of with the newer cox 11 inhibitors like celebrex, Viox, bextra but many of these have been pulled from the market in the USA due to lawsuits.
The risk of cardiac problems is likely no higher than the older NSAIDs like ibprophen but a the liars found a way to a fast buck so now those with stomach ulcers and GERD have no reasonably safe medication.
Hi Janice!
I was going back and came across your post after I had replied to your later one. What a nightmare! I can’t believe they said you had pancreatic cancer. One would hope that all possible diagnostic tests are done before giving someone a diagnosis like of cancer. Thank Goodness it isn’t that. SOD is rough, but can be managed. I hope you can get to Indiana when you go on the other insurance. I believe the dr there who is well experienced in this disease is Dr. Lehman. I’ve seen a number of people refer to him. It seems like those who see him really like him. How long until you could get there?
Morning everyone, I hope everyone had a some what tolerable weekend. Mine was normal (well normal for US) I went for my pre op physical Friday, and I’m counting down until Thursday. I just hope all the tests they do give me some kind of answer, resolution or something… I should ask Sarah or Carrie to fax me a copy of the note Dr.Freeman sent my regular doctor, because besides the endoscopic ultrasound and the blood tests he said another name of a test and I can’t remember what it was, and he even said he has never heard of it. I am usually looking up everything under the sun on the web, so I want to research that too. If I find out I will share the information. I wish everyone a pain free day, Michele/MN
Hi Michele/MN -
Good luck tomorrow!! I hope it goes well and that you get some answers. You are getting EUS as well as pancreatic function test, right? Please post when you can and tell us how things went.
All the best,
Michele A.
Michele A, Thank you!!, Yes I am having the EUS and function tests, I got pushed back an hour, but that is ok, I am very anxious to find something out. The pain has been absolutely horrible the last few days. I will post as soon as possible. Thank you again for the support, I hope everyone is having a tolerable day. Michele/MN
Of course! We Micheles with one L and SOD symptoms have to stick together, lol!! I am sorry that the past few days have been so bad – this may reveal how warped my thinking has become about this stuff but in a way maybe it is good because if you are having attacks there is better chance of “catching” what is wrong tomorrow? I hope that is more than wishful thinking. Feel good and again, good luck!
Michele A.
Hi Michele!
I know your tests are today. I just wanted to let you know that I’m thinking of you and hoping they go well for you. I’m praying for some answers for you. I agree with Michele A. If you’re having a bad flareup, I’ve been told the odds of discovery are increased. I’m also hoping that you didn’t encounter any bad road conditions with this lovely rain
& snow mix that we’re having! I think you were supposed to get more snow up north than we did in the Cities. I’m anxious to hear how it all turns out. Take care and let us know when you’re up to posting again.
Kris
Oh I hope the weather cooperated for Michele/MN’s trip and tests! This weather is nuts – we’re already having Noreaster here. Just what we need.
Kris I saw your other response to me but there was no option to reply. How are you doing this week?
I posted a question last week to the general group wondering if anyone got an abnormal finding on endoscopy with fluid in stomach – did not get any feedback so maybe I am the pioneer. Wonderful, right?! I am going for more tests to see if we can peg an underlying cause. My doctor initially suspected SOD but as of now is sort of off that – I don’t think she has ruled it out completely but is going for/hoping for something with an easier fix. Wouldn’t that be something?
Hope you have a good day. Looking forward to hearing from Michele/MN!
Michele A.
I found some clinical trials going on in the states. I am waiting for my info in the mail for the trial at UAB in Birmingham. I will keep you posted on if I participate and what they are doing. Here are some other trials for SOD, http://clinicaltrials.gov/ct2/show/NCT00688662.
I had posted a comment on here back in February regarding my problems. I had my gallbladder removed in July 2008 and within weeks was back in the hospital with severe pain(comparable to gall bladder attacks) and my liver enzymes were VERY elevated (in the 400’s) so I was referred to a GI doctor who saw me and told me it sounds like SOD-gave me information on it and referred me to a Dr. at University of Indiana. I tried different pill’s to try and ‘relax’ the muscles of the bile and pancreatic duct but they were not successful. They did help at times I wasn’t always feeling so ‘tight’ in the upper right side, but I was still having pain attacks-very very severe ones that would STOP me in my tracks. These usually happened in the mornings. So I did get back in with my doctor at IU and he scheduled the ERCP w/ the mamomentry in April of this year. I was really nervous, but at this point my life was misreable, I have 4 kids, husband, house, full time job to try and keep up on and my pain was keeping me from everything.
I had the procedure done and he said my pressure was high in my pancreatic duct so he cut that muscle and put a temporary stent in place. He told me it should exit the body itself within 2 weeks. A couple days later my pain was unbearable so I went back to the hospital to find I had pancreatitis. I ended up being in the hospital a little over a week and did take more time to recover from that. Within about a month after my procedure I was feeling pretty good. Still very anxious in the mornings anticipating or fearing that I would have a pain attack..it has taken time to ‘teach’ my body that it’s ok I am all better now. And my quality of life has very much improved and I don’t fear my pain anymore. I do have issues with some foods now..which may be from the gallbladder surgery. But, red meats, cheese, chocolate, caffeine, onions really seem to bother me. Cause nausea, bloating and just plain uncomforatable in my belly for a day or two. I just watch what I eat now and can control it.
From my experience I am SO happy I had the ERCP done..in my eyes it was worth the pancreatitis and being down for a couple of weeks to live pain free for 5 months now and counting…..
Hi Michelle,
I am no medical expert but wonder if you’ve ever tried digestive aids. It sounds like they could help with the foods that give you trouble. I wonder if the problem stems from the GB removal. I was told before my surgery that there could be digestive problems after and I think – though not 100% sure – that digestive aids help. I don’t know if they meant prescription but in the past (way before the issues that landed me on this site!) I have used over the counter kinds with some success. Those were natural – I think I got them at a GNC or a place like that. Just a thought. They even make them without any animal byproducts for vegetarians! (I am not but the regular ones had a weird smell that turned me off completely!) I hope that you are otherwise pain-free and I am very happy to hear your success story!
Hi guys…just wanted to say that I’m sorry you’re having trouble with the commenting system here. Just a friendly reminder that there are now over 1000 comments on this blog entry. Blog comments were never meant to replace typical forum conversation. I am happy to continue to host this discussion, but please understand that there isn’t a lot more I can do to make the flow of comments go smoothly. It is what it is. Thanks.
Judi, thanks so much for continuing to host this. This is by far the best resource I have found on the subject, and it makes such a difference to be to be ablt to connect with people having similar issues. How are you doing with the SOD?? With all of the comments I never was able to find you or figure out if you ultimately got better – certainly hope you did!
Thanks, Michele. That is so sweet of you to ask. Compared to most of you, I’m doing really well. On a scale of 1 to 10, my pain averages a 1-2 after nearly every meal, and depending on what I ate may go as high as 6. So enough that it bothers me, but not bad enough that I feel I have to go to the ER. I’m just not a good candidate for the ERCP/sphincterotomy since I’m definitely Type III and can’t risk ending up with worse problems.
Of course, any pain is not good but I know from reading all these comments as they come in that I don’t have a lot of options. I just have to live with it, which I do. I don’t remember what it feels like not to have at least a constant ache just under my right breast. It’s just always there.
I’m very careful to avoid abrupt changes in my diet or medications that say “may cause stomach upset” as that seems to be my trigger. So I can eat anything I want, really, I just have to do it consistently. If I eat too early, too late or have something I’ve never had before then I’m asking for trouble even if it’s something that doesn’t have a smidge of fat. Was fun explaining to folks the reason why I can’t fast at Yom Kippur…”I must eat on schedule or the place where my gallbladder used to be explodes.”
I promised my husband that if I get another full-blown attack (fever, headache, excruciating pain, vomitting…pretty much classic pancreatitis-like symptoms) I would go to the ER (since I have no one local I can see who knows a thing about SOD). So far, so good.
I really was hoping to hear that you were all better, but as these things go I guess you are reporting good news. I have a feeling I ultimately will be in the same place as you. (I did fast this year and probably should not have, but I have far less experience at this fun stuff … I did listen to my husband and had some sips of water here and there to keep it tolerable – I know technically it means I broke fast but what can you do!)
It is so upsetting that there is no safe diagnostic/treatment process for this. Thank goodness for your blog – I don’t think I ever would have fully appreciated how complicated this is (or understood a lot of it!) without all of the helpful information here. Maybe I am too cynical but I can’t help but wonder if there would be more resources/better options devoted to this if it predominantly hit men (and men under 50, as I think it’s women under 50 who are prime candidates).
I really hope things stay stable with you and no ER trips needed!!
Michele A.
You’re not cynical at all, Michele! Dr. Freeman told me last month that the reason there isn’t alot of research on this disease is because it is primarily a woman’s disease. He said it isn’t fair, but it’s a fact. He is currently involved in a 5 year research program along with 5 other University hospitals. He said he’s doing everything to educate other healthcare profressionals. We need more like him!
Hi again, Michele!
I just saw your reply to me after I replied to you! There was no option to reply there, so here I am again. I haven’t heard of anyone having abnormal fluid in the stomach during an endoscopy. Maybe you are the pioneer. Ugh is right. I’m having a pretty good week with SOD, but I’ve got the flu and have been home from work for 4 days. My fever finally broke this afternoon. I’m exactly like Judy says. Never without at least a dull ache under my right rib cage and varying degrees of pain after eating. There is no logic to this disease. It has a mind of it’s own. I can eat something one day with nor problem, eat the same thing the next and it causes more pain. So, I just eat what I want and deal with it. I hope you get some answers soon. That limbo phase of not knowing for sure is so hard to deal with. It’s scary! Dr. Freeman finally confirmed SOD last month. It has been a huge relief for me just to have say the word and know exactly what I’m dealing with. I’m looking forward to hearing from Michele here in MN, too. I’m praying all went well for her and that they didn’t run into snow on the way down to the Cities. They said this am on the news that it’s the coldest first 2 weeks of Oct. in MN history. I can hardly wait for January!
I know you guys are getting it back East, too. Let me know how you’re doing!
Hi Kris & Michelle….I also had fluid in my stomach at the time of my endoscopy…even though it had been over 12 hrs with nothing….dr said it was bile….he didn’t sound like it was a suprise though! Said I had chronic gastritis….even though I take nexium every day….Does anyone one know why SOD makes you so nauseous?? I can’t stand it! and right now my Zofran hasn’t been working either….atleast when you’re pregnant you know there is an end in sight…..and a cute baby!!
Kris – Thanks for your replies. I guess it’s good to know that I am not cynical, but that I am right is not especially good! Ugh. Sorry about the flu – hope you are feeling better. It sounds like I am like both Judi and you (kind of felt like I was reading my own story), but I think I have a ways to go to get an answer. I am doing about the same as usual, and going for yet another test to try to figure out what is going on. I think I still am in the rule everything else out phase, which is getting pretty tedious already, but based on the stories here so far it is nothing! How long did it take for you to get the SOD diagnosis? Did he classify it by type? How did you finally get diagnosed?
Laura, thanks for your input too. I get the sense that gastritis is the fall back for a lot of doctors. The sense I got was that the fluid buildup was pretty abnormal and they are not sure why it is there yet. Do you also have a diagnosis of SOD? I am by no means an expert, but I have to think that if you have SOD it explains a lot of things going wrong. I don’t know the medical/clinical answer for the nausea, but I would guess it has something to do with back up of bile – if there are fluids building up where they are not supposed to be, I guess it gets things churning. I have not been diagnosed with SOD but that is one of my biggest complaints and to me it can be worse than the pain. That said, I am lucky that thus far at least my worst bouts of pain are relatively brief (basically, most times by the time I wonder if I should call doctor or go to ER, it has subsided enough for me not to have to do that).
Michele/MN – hope you are doing ok – post when you can and let us know how you are!
Michele A.
Hi Michele A….yes, I was diagnosed with SOD I a month ago….I’m having the ERCP next week….my bile duct is dialated 12mm and supposedly there is a stone stuck in it! All this nonsense started back 4th of july weekend….I ate ribs!!…I had my gallbladder out 6 yrs ago and never had a problem….I had a month of horrible pain…the kind you want to shot yourself…I was admitted to the hosp initially and told I had a kidney infection…..asked for labs….finally got them, and all normal….dr wouldn’t even listen to me about it was “right where my gallbladder use to be” plus I had nonstop belching! I said the pain was gone after 2 days just to get out of there! 2 more ER visits, pulmonary Dr( I have asthma), endo (hypothyrd), and cariologist….He FINALLY listened….told him I was in the middle of a medical fiasco….he said sphincter of oddi!! It took another 2 wks to get to gastro. After endoscopy & MRCP….I was officially given this stinkin SOD.I diagnosis…I’m used to eating whatever…so I’m frustrated!! The pain I have is annoying but not disabling as it was for that month of July….the nausea and bloating, no matter what I eat or don’t eat is the problem….The regular gastro has now sent me to a specilist in Boston. Not many drs have even heard of this….when I was in the ER the third time, I asked the dr about it….she said your gallbladder has been gone for 6 yrs! you can’t have a problem!! Well, glad to talk to you, I’m just trying to understand this condition….take care!
Hi Michele and Laura!
This turned out to be a 3 year saga! I started out having occasional nagging pain under my right rib cage in the summer of ‘06. I finally told my PCP dr about it when I went in for a pre-op for spinal fusion surgery in Feb. of ‘07. He insisted that I have another colonoscopy as soon as I recovered from the surgery because there is a strong history of colon cancer in my family. (I had had a normal one 2 years prior). I had it done in March of ‘07. It took the dr. an hour and a half to do it because I had so many abdominal adhesions. He said it was the hardest one he’d done in his career and he’d done thousands. HE said to go to the ER if I ever had severe abdominal pain because I was at high risk for bowel obstruction. I went along with the usual nagging pain until one day in Oct. of ‘07. I had a horrible attack after eating meatloaf at a restaraurant. Off I go to the ER for the first of many visits that everything shows up normal. My PCP dr referred me to a colon surgeon, who ordered a bunch more tests. He tells me one day that the only thing that can be done is to remove my entire colon!He offered no explanation of why, only that this is the only thing that will fix the problem. Off I go to another colon surgeon who says not only would this be a mistake, but that it would be dangerous. He orders a bunch more tests, can’t find anything, gets frustrated and says to go to a pain management clinic. In Aug. of ‘08, I end up back in the ER. This time I went to the ER where the dr. who did the colonoscopy practices out of because I knew he’d at least understand the adhesions. The ER dr called him and he remembered me even though he hadn’t seen me for a year and a half due to the difficulty of the colonsocopy. He had them admit me. More tests, all normal. He then agreed to take me as a patient. He ran all kinds of other tests as an outpatient over the next couple of months. Meanwhile, I’m having more frequent attacks with a few more ER visits. As it turns out, he used to work with Dr. Freeman. He finally referred me to him in Jan. of this year. I hads an EUS done in Jan. That showed that I have pancreas divisum. Dr. Freeman wanted me to have surgery for the adhesions before he attempted an ERCP since my enzymes were never elevated and there was no evidence of pancreatic damage. In March, I had surgery to have the adhesions out. They also discovered a large ovarian cyst on my right ovary. That was also removed. However, they needed to take the ovary, but couldn’t without written consent, so surgery is again scheduled for May. I was in the ER twice in April for pain. Dr. Freeman recommended having my gall bladder removed during the May surgery in the hopes that would stop the attacks even though there was no evidence of gall bladder disease because that was sometimes successful. I had the surgery done (and the adhesions were back already, so they removed them again) I was back in the ER in June. I was admitted again. I had voluntarily gone off my pain meds because I thought I was done with all of this. The hospital docs actually admonished me for doing this because they said I had 2 conditions that were extremely painful and that I couldn’t be off pain meds. I had an MRCP with secretin done in the hospital, which showed a dilated common bile duct. Dr. Freeman then talked about SOD. He wouldn’t do the ERCP in the hospital because I was already at heightened pain levels. The ERCP was done on July 2nd. He found “extremely high pressure” in my common bile duct, so he cut it. Unfortunately, it didn’t help at all. I was back in the ER in August. I am fortunate that they understand my conditions and they take care of me very well. When I saw Dr. Freeman in Sept., he said it’s SOD and I should have asked him if it’s I or III, but I didn’t. He said he won’t cut my common bile duct. He also said he won’t cut my pancreatic ducts at this point without evidence of chronic pancreatitis because he feels it could make me worse rather than better. It was then he referred me tothe Palliative Care Center for pain management.
I should say that since the gall bladder surgery, the pain has been 24/7 vs. more episodic as it was before. Dr. Freeman said that can happen if one has SOD issues. I told him that I wish we’d left it in, but, as he said, it was the first step he had to try. I don’t blame him.
I am doing so much better now that I am with Dr. Carter at the Palliative Care Center. He really gets it. I take 50 mgs of Lyrica 3 times a day. I also wear a Flector patch (it’s an NSAID medication) and I also take 10 mgs of Oxycodone every 3-4 hours in addition to taking Viokase 16 pancreatic enzymes every time I eat. I find that I don’t have to take the Oxycodone in the evening or during the night, so it’s about half of what the prescription is written for.
I don’t understand the nausea part, either. Strangely, I’ve noticed that now that my pain is under control, I have far less nausea. I was wondering about this the other day and thinking maybe the nausea comes from being in so much pain?
Sorry for the long post! As you’ve learned, the journey to this diagnosis is a long one. It helped me along the way to read and learn about how others got there, so I thought I’d share the story.
Also, for anyone having an ERCP, it’s a very delicate procedure that can have complications. It’s vital that you have it done by someone well practiced at it. The doctor who referred me to Dr. Freeman mentioned sending me to him for that reason. I asked him if he could do it and he said no. He said he used to do them when he worked with Dr. Freeman, but he hadn’t done them in 6 years. It was he who told me of the importance of having it done by a doctor who specializes in them.
I hope you get some answers soon. Please keep in touch and let me know how you’re doing along with any updates you have. I wish you the best!
Kris
Kris,
I have an appointment with a pain management specialist on Nov. 20th and I will be curious to see what he has to say. My GI dr has been giving me Percocet and now after 3 years on it I am up to the 10/325 mg strength which the same as your oxycodone 10 mgs just without the tylenol. I find that I have to take it every 3 to 4 hours also but my dr said that I should only be taking it every 6 hours…I bet he has never had this pain! I am wondering if the pancreatic enzyme would help me at all. I also wanted to say that I have had my CBD cut three times and after the first one I was pain free for 2 years..then cut the second time and again pain free for 2 years..then cut again and two stents put in and I have had pain ever since. I ended up in the ER 2 days later in so much pain and my dr had left town the day after he put in the stents for a week so no getting ahold of him! When he got back he said “Yeah I figured you would have some pain because you were closed down pretty tight”. Thanks for telling me what to expect! I wish I could fly to see Dr. Freeman..he sounds like a really great Dr. I am hoping to get some answers on Tuesday. I hope everyone is doing as well as you can with this crazy disease.
Hi Karen!
I wish you could fly to see Dr. Freeman, too. He does take out of town patients, but I know that insurance and finances
can prohibit traveling to see him. Where do you live? I would be more than happy to email him and ask him for a recommendation to a dr in your area. He is very good about answering emails, which in itself is very impressive to me. I was told to let him know of my last ER visit in Aug., which was a Sat. night. I emailed him on Sunday and he answered in 2 hours! When was your last ERCP done when the stents were put it? Do you know if they came out? Dr. Freeman said they are supposed to pass through your system on your own within a week, otherwise he goes in and removes them. I had an X-Ray one week after the ERCP to confirm that the stent had passed. I’m sorry, but your GI dr. sounds like a jerk…leaving town without telling you what to expect based on his observations! Are you still seeing him? Is that who your appointment is with on Tuesday?
As for the pain meds, Dr. Freeman was kind enough to prescribe Percocet to me until I could get to the Palliative Care Center. He prescribed 5/325, one every 6 hours. I emailed him and told him that I was having to take at least 1 every 3-4 hours and sometimes 2 because of the pain levels. I didn’t want to take more without being honest about it. He was OK with it. When I first saw Dr. Carter at the Palliative Care Center, he told me that my prescription was for what someone who came into the ER with a sprained ankle would be given and wasn’t nearly effective for someone with this condition. I literally broke into tears with relief to finally have someone who understood. I started out by trying to take between 4 and 6 a day. I was finding that I was still having quite a bit of pain. I decided to stop trying to be a martyr and now take 2 every 3-4 hours as the rx is written for. I can keep the pain to about a 2 all day by doing this. I had tried taking the enzymes for about a month in Aug., and they didn’t seem to help, so I quit. I’ve gone back to taking them at the advise of an RN who runs another support group on Yahoo. She recommends taking them for those with SOD even if you don’t have chronic pancreatitis because they help your pancreas to rest, therfore potentially helping to avoid long term pancreatic damage. That made sense to me, so I’ve been back on them for about a month. Adding them seems to have helped decrease the pain even more. I b elieve the combination of medications has done the trick.
When I saw Dr. Freeman at my appt after being at the Palliative Care Center, I told him what Dr. Carter had said about the amount of meds I’d been on. I told me that I was telling him that not to be judgemental of him. but to let him know in case he had other patients in the same situation. He wasn’t upset at all and said “that’s why I sent you to him because this is my specialty, not pain management.”
I really hope you have a positive experience with the pain management clinic. Is there any affiliation with that clinic and your GI dr? In my case, with both of these drs being at the U of M and communicating with each other, I think it helps.
I read your other post about how much pain you’re in. I feel so bad that you’re in that place. I’ve been there on so many occasions and it’s an awful place to be in. Like you said, this is a crazy disease. It’s so dificult to explain to family and friends. I’ve heard it referred to somewhere as “The Invisible Disease” because you look OK, but we all know we’re not.
I’m doing so much better now that the pain is under control and being with drs. who understand and help. This disease affects you physically, mentally, emotionally and financially as we work to manage living with it.
Please know that my thoughts and prayers are with you. If there is anything I can do to help, please let me know. If you’d like to email me privately, please let me know that, too. I’m not sure if our email addresses are available on this blog or not. If you’re comfortable sharing yours with me, I will definitely reply.
I hope your day goes ok today. Let me know how you’re doing!
Take care,
Kris
Kris,
First of all..thanks so much for your reply. You have helped me more than you know! My stents were put in Jan of 2007 and they were left in for 3 very painful months. He had to go back in and take them out in April.
My appointment on Tuesday is with a different dr at the Virginia Mason Clinic in Seattle, Wa. He is the same dr that did my second ERCP because he had the machinery to measure the pressures and he said they were high in the CBD so he cut it then. I think I am going to find a different GI doc then the one I have had after my last visit with him. He told me I was 1 of 3 patients that he treats with this disease and I just don’t think he knows what to do with me now. He says I am a compicated case! He changed me from Gabapentin to Lyrica at my last visit but before he did that he said that he was going to call one of his other patients that he treats that he just put on Lyrica to see if it was working for her and literally got up and left the room to call her! I couldn’t believe it! She was in the shower so he couldn’t talk to her! After that I went to my regular dr and she said the Lyrica dose is very puny (her words) and she increased me to 75mg three times a day and I asked to be referred back to the dr at Virginia Mason in Seattle. I would love it if you could ask Dr. Freeman to recommend a dr here in Seattle, Washington if he would. That would be so great! Also Kris if you could email me I would love to ask you a couple of more questions if you don’t mind. My email address is kar@wavecable.com. Thanks so much for listening..sometimes it helps so much just to vent. I do love to hear how everyone on here is doing. Please take care of yourselves and have a great day!
Hi,
Just wondering if everyone that has SOD, has had their gall bladder removed? I did not have the surgery where they make the long cut on the abdomen. Just the 3 slits and that was it. I am wondering if this procedure started the whole thing? I am 62 yrs. old. I had pain ever since having my gall bladder out about 12 yrs. ago, at the age of 50 and was diagnoised last year with SOD. I had that procedure done last year at the University of Michigan, where they slit the bile duct muscle. Well, it lasted 10 months, almost pain free, had about 3 bouts of pain but not enough to go to ER. Believe me I felt like a new person after the procedure… I had lost 25 pounds and aged at least 10 years. And I was put on Reglan last January. And pain med Tramadol. I cannot take any narcotics for it makes the SOD worse, if that is possible. Tried several narcotics, just cannot take them. Now I am not sure if the Reglan really helped or not, guess it was the procedure because the pain is back again, but not as bad. I’m sure it will get worse, in time. And this time I am having headaches with the pain, which I did not have before. But I went to my gastro doctor yesterday and he is sending me back to the University of Michigan, in Ann Arbor Michigan. He believes the SOD is back. UGH…… I wish someone would come up with a positive cure for this problem. Not a temporary cure. Am waiting for the call from the University for an appointment. Sure hope it is soon.
Hi Janice!
I just put up a long post in response to Michele A. and Laura that you might want to read. I had my gall bladder out in May of this year and have had constant vs. episodic pain ever since. I had an ERCP with the cut in July, but it didn’t help me. I have found that I also get headaches when the pain gets really bad. I’m not sure why that is. I am able to take narcotic pain medication and it helps me alot. Everyone is different with this disease. The key is to find what works. I have an rx for Tigan for nausea. However, I’ve found that since my pain is under control that I have far less nausea. Unfotunately, I think we are a long way from finding a cure for this awful disease. I hope you get into your appointment soon and get a plan from your doctor. Please stay in touch and let us know how you’re doing.
Take care!
Kris
Kris and Janice,
Before I had my gall bladder out I had more control over the pain by not eating fatty foods. I did not have gallstones. I had both sphincters cut in separate ERCP’s in March. I did not get pain relief from either. I did get rid of the nausea after getting the bile duct sphincter cut, but now the nausea is back. For me the nausea and pain due not seem to come at the same time. I tried an endoscopic celiac block a week ago Wed. and I do not think it did anything. When I eat food with any fat in it. I get a horrible odor. Some days I do not feel like chasing my 13 month around and taking my 8 year to activities or dragging myself to work.
I can’t imagine how hard it would be do keep up the energy to care for young children with these disease. My 2 young grandsons spend alot of time with me. I love it, but it does get tough some days. Yup, the fatty foods do seem to set things off. I’m working on watching that. I’m sorry you didn’t get relief from the ERCP, either. Dr. Freeman advised me not to haved the celiac block, so I’m going to avoid that. Are they saying you should follow it up with another?
Kris can you tell us why Dr Freeman advised against the celiac block?
He said that his experience is that it aggravates the pain associated with SOD. He told me that this is the first thing pain mangement doctors typically want to try and under no circumstances to let them do it for that reason.
He said the same thing to me – verbatim. ( This will be a short post Kris but
wanted to let you know that I should have time later this evening or tomorrow night to post again btw, going to Chat?
It’s unfortunate the celiac block didn’t work for you. Since this ganglion contains all the afferent noxious pain fibers from the GB, pancreas and viscera it’s hard to understand why it fails.
Yet in benign conditions it’s only 40% effective – cancer it’s about 80%. So it seems there are some benign conditions where the pain arises from some other place.
With me the pain is bearable for about 5 days, then it builds up and the nausea kicks in and becomes unbearable. I’d call getting rid of the nausea a major success in my case. It’s a shame the pain seems to return in so many of the successful procedures reported here. I’m wondering if some docs are doing incomplete cut? If you watch the surgery in the video with Dr Freeman he just about destroys the entire papilla. It’s hard to see it ever coming back from that.
In regard to your comment that Dr. Freeman’s video shows him practically destroying the entire papilla, he IS able to do this because he is as good at
this procedure as he and others say. For example, he told me that he made a
very large cut to my cbd (common bile duct) and amazingly I have 2 local
doctors who were in amazement at how large of a cut he actually did.
Now there are some who will say that it is not good to make such a large cut
because the relief may not last and will cause more adhesions but anything
I have read is that as long as the doctor performing the cut knows exactly what
he is doing and he does them well, then the result is almost always good, at
least for a period of time.
It’s great to have this website to be able to hear so many stories.
For me the nausea is the primary problem I can deal with the pain, but the deep dull visceral nausea is unbearable.
I think some possible conclusions can be made form all the stories here.
Firstly that the diagnosis of SOD is uncertain. My guess would be in the cases that did not respond to the ERCP, that it wasn’t SOD, or SOD wasn’t the primary problem. So clearly there are other conditions that mimic this disorder.
Secondly if you can tolerate narcotics it may not be SOD.
Fourthly that having you GB outdoes tend to instigate the problem.
I’m seeing a doc for a consult and possible ERCP. Being a male with an intact GB and type 111 I’m beginning to wonder if I have SOD at all or if it’s something else.
Hi Brett!
Well, you’re on the same track with what Dr. Freeman told me. He said there are a number of people in the medical community that believe SOD doesn’t exist. He said he is trying to educate as many as possible that it does. Like he told me in my case, “you can’t imagine high pressures in the common bile duct, as you had,” yet cutting it didn’t help. He said he sees about 200 patients a year, primarily women, who have this and respond the same way I do. It does make you wonder. I swear I have had every test known to modern medicine and the only issues that have shown up are the high CBD pressures and adhesions. Adhesions surgery didn’t help, nor did the ERCP with cutting the CBD.
You are in the minority being a male with this condition, as he told me that this is primarily a women’s disease, thus the limited research.
It is truly a mystery diasease. I sometimes wonder why I didn’t have it years ago, in spite of having pancreas divisum. I was under significant stress at work when it all began. Was that the trigger?? I really wonder….
Hello everyone!
I haven’t been on here lately as I have been feeling pretty bad lately. I am having pain every day and just not feeling well. I am going to the specialist on Tuesday and hopefully I can get some answers. My Dr. has referred me to a pain management specialist but I can’t get into see him until the 20th of November. I am in so much pain most of the time. I just cut my hours down at work. I told them I just couldn’t do it 5 days a week anymore. Plus I need to have one weekday off a week to go to the dr and other errands. My dr also increased my Lyrica to 75mg three times daily..maybe that will help also. I just can’t help but get depressed sometimes due to the constant pain. Plus knowing there is no cure for this and no light at the end of the tunnel is very depressing for me.
Hello All,
I have only posted on here a couple of times but I read the post on here everyday. All of you have my exact story.
I started having URQ pain in June 08. It started out as a dull ache. I went to my family doc and he prescribed Nexium and I took that before I would eat dinner and things seemed to be better. Then in Sept 08, I had my first full blown SOD attack. I ended up in the ER but all of the test came back normal. The shot me full of pain med and sent me home. A couple of days later I was back in the ER with the same pain. I had an ultrasound and HIDA Scan on my gallbladder which were normal but I was still having the attacks. I decided to go ahead and have my gallbladder removed in Oct. 08. It helped alittle, I still had attacks but the frequency of the really bad ones had diminished.
After a plethora of other tests, I was referred to Indiana University Medical Center to see Dr. Stuart Sherman. He did an EUS and a MRCP, of course both of those came back normal but I was still having pain everyday. Dr. Sherman didn’t want to do the ERCP until we tried all sorts of medications and other tests and we were at the last resort. Well, I got to the last resort.
Finally after my last trip to the ER, I emailed Dr. Sherman and told him we were at the last resort and I wanted the ERCP done.
I finally had an ERCP done this past Friday with Dr. Sherman at Indiana University. He was able to do the manometry on my CBD. He said the pressure was over 3x what it should be. He made a 1cm cut in the duct and I woke up with no pain. It is really weird considering I have been carrying the pain in my URQ for about 1 1/2 years now.
On Friday, I just wanted to tell him I told you so, when he confirmed that I had SOD III. I could have had this taken care of in December 08 if he didn’t want to do a bunch more tests.
I know that this might not last and I might need to get another ERCP sometime down the road but for now I am happy to be pain free for the first time in over a year.
My advice to everyone on here is to find a doctor who does ERCP with manometry. If I wouldn’t have stayed after all of my docs, I would still be in pain and just waiting for the next attack.
Jennifer
Hello Everyone, Sorry it has taken me so long to post. Well Thursday was a very long day, I was there at 12:30, and didn’t get the tests done until after 4. I had the Endoscopic ultrasound, and they did the pancreatic function test. The function test involves putting Secretin into the pancreas, and taking samples every 15 minutes for an hour. I will not know the results for three weeks, because they send samples to the Mayo clinic and to New York. After the tests when I was in recovery, the one doctor came in and said that the ultra sound looked good, and I started crying.. I explained to him that I was glad everything looked good, but that’s not helpful for my pain. It was very nice suprise to see Dr. Freeman before I went in. I will be calling on Monday to see what he says about the ultra sound. It was a long ride home, and it’s been a long weekend, with this pain. I thank everyone for the support, and the prayers. I have been thinking about all of you as well, it’s only been a couple days, but I have missed everyone. I want to thank you Judi for bringing us all together. I hope everyone is having a tolerable day, take care Michele/MN
Hi Michele!
It’s so good to hear from you. You’ve been on my mind since Thursday, the day I knew your tests were being done. I’m glad to hear that Dr. Freeman stopped in. Oh honey, I know what you mean about “normal and it looks good”. It does’t explain the pain. It’s there and real! Dr. Freeman will help you, no matter what the results are. For now, please try to think about feeling better. Thanks for letting us know how you’re doing.
Kris
Hi Michele/MN,
Really glad to hear from you. You know what I mean when I sorry you got the “normal” result. Hopefully Dr. Freeman will have more insight. I know what you mean, it’s not like anyone wants an abnormal result, but you want to know why you feel like this all of the time. Already been there, as I know you have. Do you know where in NY they are sending your samples/reports? Anyway, I am glad you made it through ok and got home safely. I’ll be waiting to hear about your reports!
Feel good!
Michele A.
Hi! Michele in MN-I’ve got a question? What was the other test you had called? If I remember correctly from your earlier posts, I thought you’d said that Dr. Freeman wasn’t familiar with the test. Was it another doctor then who ordered it? I hope your day is going well and that you are feeling better!
Kris
Kris, I found my paperwork from Dr. Freeman, this is what he ordered: Secretin stimulated MRCP, endoscopic ultrasound, plus a pancreatic function test (which is secretin stimulated analysis of pancreatic juice output) My family Dr. up here had never heard of one of these tests. Dr.Freeman also wrote in his report, that these are the best tests they have to diagnose subtle,minimal change chronic pancreatitis. (his words) So now I just have to wait patiently.. Ha ha easier said then done. Well I am off to try and get some sleep, I hope everyone is resting easy tonight. I will say a prayer for all of us. Michele/MN
Good to hear from you! I hope to you’re feeling better each day. I’ve had the MRCP with secretin and the EUS, but not the function test. What a long impatient wait for the results!
Kris
Michele/MN,
Sorry that I can’t keep people’s stories straight – have you been diagnosed with SOD yet? I think that you have yet to have ERCP – is that right? If the tests diagnose that type of pancreatitis, is that indicative of SOD and then you go the ERCP route? Sorry again but I still am fairly new at this and want to keep track of where you are.
I hope you have a good week and are feeling a bit better. Waiting stinks but hopefully you have good things around you to distract you (at least now and then!).
Michele A.
Hi Jennifer & others….I’m so glad to hear that you are finally pain free!! I am curious..what were your other symptoms? did you have the terrible constant nausea? food staying in your stomach? If so, did these symptoms stop also?? I’m SOD I and suppose to have my ERCP sometime this week….I’m terrified…I’ve read so many other stories about how it didn’t work or made it worse….You give me a glimmer of hope!! Take care!!
Laura,
I just wanted to tell you that after my first ERCP w/spincterotomy I was literally pain free for 2 years! Then they did another one because the pain started coming back and again I had 2 years pain free! So if I had it to do over I would have had the first 2 spincterotomies done but I wish I would have known about the stents I had put in the 3rd time causing me so much pain and I wouldn’t have had that done. I think they caused ductal damage with those 2 large stents they put in. I hope this helps you with your anxiety. It was well worth it for me the first 2 times and maybe you will be lucky and not have to have another one! Good luck to you.
Hi Laura,
I had nausea when the pain became unbearable and sent me to the ER but most of the time, I just had a pressure feeling in my URQ. It felt like a balloon was in there expanding to the point something was going to burst. I don’t know about food staying in my stomach but I know that after a couple of tests they said they weren’t able to see well because I still had food in my digestive tract even after NPO after midnight.
It is 3 days after my ERCP with manometry and I am still pain free. I even ate some foods that would also send me into a big attack (eggs, red meat) and that did not bother me.
The doctor who did my ERCP did not do a pressure test on the pancreatic duct. He did not feel it was necessary since the pressures in my CBD was so high. He also did not use any stents. He said that would lower my changes of developing pancreatitis after the procedure.
I hope you the doc who does your ERCP has alot of experience doing them. If he has alot of experience doing ERCP’s, you lower your risk of developing complications.
I have also read others experiences that it made things worse or didn’t work for long so I am kinda waiting on the other shoe to drop but for now I will take the pain free days.
I hope all goes well when you have your ERCP.
To Pain Free Days Ahead!!!
Jennifer
I’m so happy that this has worked for you so far! It’s almost odd sometimes when the pain isn’t there. It’s almost like it becomes part of you. It’s a great feeling to not have it! I’ll pray that you continue to haev many pain free days.
Kris
Hi Laura -
How did your ercp go? I am guessing that you have had it since your last post I read you stated that you were going to have the procedure sometime this week and it’s now the 23rd. I posted here before but I can’t find it and so if I repeat myself I apologize
I also am sod I and was first diagnosed via secretin & EUS and again in February 09 via ercp w/Dr. Freeman. Please try not to be too frightened of the ERCP because sod
I is the only sod that can truly be “fixed” since it can be absolutely diagnosed because of the physical findings/documentation of elevated enzymes and dilated
ducts. Also as long as you have a doctor who does them (ERCP’s) at least twice a week then you should be fine.
Now if you had seen me when Dr. Freeman recommended that I have an ERCP in order to hopefully help me, I told him it would be a cold day in “you know what” before I would ever have another. (My first ercp is what started up my pancreatitis to start with, i.e. spent one month in ICU).
Obviously I did change my mind when my symptoms worsened and figured the ercp should at least be a lesser procedure than the tp /iat but it took me from June
08 to February 09 before I relented and had the ercp.
I hope everything went well and if you’re not feeling a least a little better, that you will in the very near future. If you have already posted then I apologize again because I’m not very good at these blogs.
Note to Judi Sohn: I am not criticizing this blog at all and in fact I thank you very much for starting it !
Best to you & everyone here,
Gracie/Cristie
SOD I/Biliary I/Papillary Stenosis diagnosed 2/09
55 yrs old/Kansas City
Hi Gracie & everyone, I did not get to have the ERCP last week, my daughter is sick , so I am having it on this Monday, I’m glad to hear that there is some hope….I started with a fever again Friday night into Sat but it’s gone now….Has anyone else had random fever with this?? I felt like I had the balloon under there and very nauseous…I tell my husband it feels like a swollen sub sandwich in there but boring pain. I’m so worried about my daughter, she is only 21 and has some sort of lesion in her mouth that the dentist wants a biopsy of right away. She has had a strange thing with her face for 2 years that know one can figure out!! But now she has this lump on her top of her mouth…I hate this! Well thanks for everyones input and hope it’s a better day for everyone. Thanks to Judy for this Blog!!
Hi Laura! I’m right there with you about the baloon. I’ve had it for 4 days again. It’s horrible. I feel like I have a fever sometimes, but haven’t checked it. I hope your daughter is OK. Please let us know how everything turns out for her. It’s scary when our kids are facing something like this. I hope you feel better tonight.
Kris
Thanks to everyone for sharing their stories. I cringe just reading what some of you have been through. I have a lot of similarities even though at this point I still am rule everything out phase (another test coming up .. so tested out already …) Janice and I think another person (sorry I am confusing the posts here) mentioned headaches with the attacks – I have those too and thought for awhile that my self diagnosed mild migraines were getting worse. Now I am questioning everything. From what I have read and learned so far, I think Brett sums it up perfectly.
Kris, I am glad you are at a good point with this. I think out of everyone you have the best story, but I would have loved to hear that you just got rid of this and didn’t have to rely on pain management.
Karen, I am sorry about how you are feeling. I am so early down the road on this and already feel dejected and at end of road, so I can’t even imagine how you are feeling at this point. I was sad to see what you said though – I hope that this site has been helpful. While it is a little dejecting (to say the least) to see what an uphill battle it is to get diagnosed and treated and how temporary the fix seems to be, I hope it has helped you to have a spot to talk about it with people who know what they are talking about (not me yet!) and that are going through the same thing. My husband has started calling the people here my “sphincter friends”! Maybe that says somethng about him … lol … but either way I thought a little sick humor might make someone chuckle here.
Hope everyone has a good week!
Michele A.
Hope everyone
Hi Michele A.,
Thanks for the chuckle..That’s kind of the way my husband sees this site also. It has really helped to hear others stories so I can read them to him and he knows that I am not crazy and that this is a very real thing I am going through. It does get very old this pain. Sometimes I just want it to go away whatever it takes. I am hoping I can get some answers with the specialist on Tuesday. I also wish I could get into the pain management dr sooner but there is hope that he will be able to get my pain under control. Like Kris said if your pain is under control then it does help alot. Mine is just constant. I wake up in pain. I don’t understand that because it never was this bad. Keeping fingers crossed that I get answers on Tues or at least a plan of action. Take care everyone!
Hi! A friend of mine calls me “The Oddi Princess”. This disease does sound like something from Star Wars. I’d like to send it there, too!
Thanks, Michele A. and Karen for your kind words. I am at the best spot I’ve been since this all started. I had a rough day yesterday. I find myself getting angry when I have a day like that. I have to stop and remember that they all used to be like that and to be greatful that it’s usually 1 day a week or so that is hard. I’m finding that I cannot eat processed foods. I had one of those frozen prepared pasta deals Sat. night. I paid for it yesterday with that baloon feeling under the rib cage, more pain and diarrhea. I have to remember to not eat stuff like that.
Karen-I’m looking forward to hearing about your appointment tomorrow. I send you just a hello email this am before I left for work. I’m on my lunch hour now. I’ll write more tonight to your email address.
Have a pain tolerant day, all!
Kris
Well..finally some good news! I went to the GI specialist in Seattle today and he asked me if I knew what triggers this and I said yes..certain foods like nuts,green peppers, raw veggies that are hard to digest,etc. He said does stress? I said well I don’t know. I do have a very stressful job working in a pharmacy. He said well your liver enzymes are elevated and stress doesn’t do that. He said was encouraging to him! so..here we go again with another ERCP and possible stents. I told him what happened with my other dr and when he put stents in they were very painful for 3 months and he said they were probably too big of stents. He said he will (if needed) put smaller stents in for 3 months then take those out and put larger ones in for 3 months and keep doing that every 3 months for a year to hopefully get it to heal open. As he was talking I started crying. he said “I’m making you cry?” And I said it is just such a relief to know that we have a game plan. He said that if I keep closing back down then he will refer me to a surgeon to do a spincterplasty and just “fillet it open”. I am so relieved I feel like a big weight has been lifted from my shoulders. I really don’t want another ERCP done (my 6th) but I can’t keep going on like this. He said he is going to do it under general anesthia this time because then I can’t become combative. He said you’re 48 and you have a life to live! Then I just went to my new primary care dr to get my pain med refilled and basically got “spanked” by the clinical director to inform me that they have a 48 to 72 hr policy on pain medication refills. I said well I didn’t know that since she is a new dr for me. I wish they could experience this pain for just 24 hours and see how if feels! So I might have to go to the ER while waiting my 48 to 72 hours for my primary dr to write my prescription! I tell ya..it’s always something!
Karen, I am very happy for you!!! I can almost feel your relief, of having a game plan instead of being in limbo. I really hope it works for you. That is rediculous about your medicine. I know they have there procedures, but come on! Well I hope you get meds sooner than later. Take care. Michele/MN
Hi Karen! So happy for you! That stinks about the medicine – hopefully once you talk to the new doctor you can set her straight. I wish I could send you some! Please keep us updated. I was so sad reading your post this weekend – really glad to hear that there is a game plan and you are not just sitting there dejected and at the end of the road.
All the best!
Michele A.
Thanks both Michele’s! It is so nice to hear from all of you on here. It really does lift my spirits. I want to tell the dr that if I was a drug seeker then I would just sit back and let my old dr give me more drugs. Believe me I work in a pharmacy and I do know what dr’s to go to to get anything I want! You try to be open and honest about everything and this is what ya get. If I just wanted drugs then i sure wouldn’t be pushing to go to a new GI doc to figure out what is going on and I sure as heck wouldn’t subject myself to another ERCP with possibly stents. They were horrible last time! The dr today said that this disease is nothing that I did wrong and maybe it could be my anatomy of the bile duct which I think others have mentioned on here before. He said he didn’t want to touch the pancreatic duct unless he really has to. That is fine by me! I hope that you both are feeling good. Laura are you still pain free? I hope you are and continue to be for a very long time.
Kris thanks so much for all of your information. You have helped me alot. I hope you are having a better night. To answer your question about the headaches..I do get headaches all of the time but never correlated them to the SOD..I will pay closer attention now. I thought it was from an old neck injury.
Take care everyone and have a restful night!
Michele A, I have had 3 ERCP’s I had two in 05, and I did good for a long time. I started having some episodes, but everytime I was going to break down and make an appointment, it would stop for awhile. Then this spring it started in and hasn’t stopped. I had my third ERCP with stints in July, but I had no relief at all, I had to have the stint removed, and it didn’t help. So that is why my doctor suggested getting the new tests done, thinking it is chronic pancreatitis.
Thanks Michele/MN! What is the treatment for chronic pancreatitis?
BTW, do you ever get pain in the upper left quadrant? I get that sometimes and it can be worse than the URQ, but it doesn’t seem to be indicative of SOD so who knows what I am dealing with!
Hope you get your results soon.
Michele A.
Michele A, The EUS didn’t show any pancreatitis, but some gastritis. I have to wait two more weeks for the other results. And if it isn’t pancreatitis they said we meet and talk about pain management. If it is, from the research I have done on my own, they can put you on pancreatic enzymes that you take before meals, and a non fat diet. I haven’t had any pain in the ULQ, just the right and into my back, daily. I have been trying not to take my pain meds, just because I hate to take them, but deep breathing can only go so far.LOL In order to make it a full day at work I have to . But I have a heck of a time going to sleep with them, so I have to take Ambien once in a while and it helps. I hope you and everyone else are having a tolerabl day. Michele/MN
Hi Michele!
If Dr. Freeman refers you to the Palliative Care Center, you’ll really like the people there. They are absolutely wonderful. Deep breathing doesn’t go too far for me, either!
I also have a hard time sleeping with them and have to take sleeping medication. I hope you’re having a tolerable day. I’m having a rough one, as I posted. Please update us when you get your results in 2 weeks. It’s a long time to wait, isn’t it? Are you getting snow up north? We had some mixed with the rain today. 
I wonder what our winter will be like with the fall being what it’s been!
Kris
Just an update on my pain medication fiasco! My husband was able to go pick up my prescription from the dr’s office on Wednesday and when I got home from work and looked at what she wrote for I was totally puzzled. She wrote for more quantity then I had been getting from my old GI dr! I didn’t ask her for anything new so this was a total surprise after the hard time I had just getting this refilled! I don’t understand dr’s sometimes. I go to see her today and I will be telling her what I thought about the whole incident with the clinical director that I had to go to. Hope everyone has a great minimal pain day!!
Good news on the meds! It’s such a relief, isn’t it? i’ve been going through a really rough flare up. I had been doing so well with the meds. I guess I fooled myself into thinking everything would always be under control. I have no idea what kicked this off, but I feel as bad as when I ended up in the ER in August. I can manage the pain with the meds, but I have that really full under the right ribcage thing going on, an overall just feeling awful along with a headache. I made it through work today. I have my 2 grandsons for the weekend. I have to work on my patience. Thanks for listening. I know you all understand.
Hi Kris
I’m sorry to hear you’re not feeling well again and I hope tomorrow will be a better
day for you. You know, sometimes it can be the weather that starts the pancreas
up – how is it up there in Minneapolis?
Andd yeah, that bloated feeling up & under the rib cage thing is the worst – I just
dread that symptom because if not gotten under control pretty fast I know I may end up in the E.R.
You take it easy and take care, that is if your grandsons will allow you to. Just remember tomorrow will be another day and hopefully a Very Good One !
God bless,
Hi! Thank you so much for thinking of me. Maybe it is the weather. It’s been so cold and rainy all month. It’s ben the coldest Oct. on record! I had the flu last week and am still dealing with the lingering cough. Maybe that kicked it off. I really don’t want to go to the ER. I think I got exposed to the flu when I had to take a friend there 2 weeks ago. She was having chest pains and it turned out to be GI related. Imagine that…! I’ll just take the meds and deal. Hopefully, these little guys will stay as mellow as they have been tonight.
Thanks again for thinking of me! It means so much to be able to communicate all this with someone who understands. You’re a godsend!
All the best,
Kris
Hi Karen! ust checking in. I haven’t heard rom you in a few days and am hoping you’re doing ok.
Michele/MN & Michele A., you guys have been quiet, too! I’m hoing you’re both doing ok, too!
We all have to keep tabs on each other, you know!
Take care and I hope everyone is having a pain tolerant day.
PS. Can you guys tell the keys on my keyboard are sticking!! LOL. I think grandsons have something to do with that!
Aw thanks Kris! I am ok I guess! We’ve had some illness (or several varieties of sick) going through the household – all of us have been sick – my husband and have some cold like virus thing that seems impossible to kick and my older daughter has had a fever that keeps coming and going – hoping the younger one stays well … it is easier to deal with my own GI woes than sick kids (and to think I never believed my mother when I was sick and she said that she wished it was her instead! (and she still says it =) ) I have had a few bad attacks and a couple of more tests that have either been negative or nonspecific – going for yet another one for more fun …. My doctor still doesn’t think SOD but yet has not ruled it out so unfortunately I think I still am towards the beginning of a very long path! I have gotten to the point where it is actually painful to lay on my right side at night. Fantastic, right??
I hope you are feeling better and that you had a good weekend with your grandsons! Thanks for looking out for us!
Michele A.
Hi Michele! It’s good to hear from you! I’m sorry your family has been sick. As we all know, there is so much going around. What test are you scheduled for next? This journey isn’t a fun one at all to get to a diagnosis. It gets really frustrating to have to keep doing test after test. Keep us posted regarding your progress.
I am feeling better. I just replied to Karen. I saw the dr. yesterday at the Pain Clinic. He gave me a shot of Torodol. I feel better today, so I thinkit helped. The balloon under my rib cage only feels half inflated today, so that’s progress!
Thanks Kris. At this point we think that we all got the same sort of virus and our poor older daughter happened to get fever with it (that is what keeps her out of school, which at her young age she still views as a bad thing!) I was purposely vague about the test but I guess this is not a site to worry about TMI … suffice to say I will be providing, er, a sample …. the tests get more degrading each time LOL!! Funny that I mentioned that I am worried about being at beginning of long road – I am almost as worried that I am near end of road where there is no clear answer. Luckily I have a really good doctor who doesn’t seem likely to abandon me. I hope!!
Glad you are feeling better. I know you mentioned not being specifically told which type SOD you have, but didn’t you at least historically have elevated liver enzymes? I thought that finding together with the pain supports a diagnosis of Type I, which usually can benefit from ERCP. But really, I don’t know enough to really say anything intelligently!
Hi Karen! I just replied to your email. Thanks so much for writing.
I hope everyone is having a pain tolerant day and a great weekend!
Hi Kris,
Thanks for asking about me..I have been meaning to post on here. We were out of town for the weekend and it was a really fun weekend. My husband played in a golf tournament from where we used to live so we were able to visit with old friends and have dinner with them. It was alot of fun. My problem is the car ride. It is a 3 hour drive and that just about kills me. I have heard others comment that sitting sometimes brings pain. I know it does for me. I thought I was crazy at first but someone else mentioned that so I know it is just another side effect of this crazy disease. I have to recline all the way back and basically get as flat as I can. It hurts real bad to have any pressure on my right upper quadrant in the back .
I was thinking about you Kris and hoping you were feeling better. I told my dr about the combo of meds that you were taking and how the Flector patch has worked for you so she gave me some samples to try. I will try the first one today. I’m hoping they take some of the nagging pain away. The Lyrica is not helping as well as I would have liked. It is also making my eyesight blurry and I told dr that if it gets any worse then I will have to try something else because it is affecting my driving now. It is also hell on the golf game!! I go to putt and the ball keeps moving! My husband asked me if the main people affected with SOD are women and I said yes and he asked what age group was on this board. I told him from 23 to 70. I don’t know how old everyone is but I thought that was a pretty good guess. I am 49 years old and was diagnosed at 40 with this.
I have a twin sister and she has not had any problems like this. She still has her gall bladder even! It is just a crazy disease I tell ya!
Laura, how are you doing? How did your ERCP go yesterday? I hope everything turns out OK for your daughter. I have been praying for her. It is so bad when your children have to go thru stuff and you have no control over it. Did you get any news on the ERCP yet? Please post when you feel up to it.
Thanks everyone for your posts and the encouragement..it is such a great site Judy!
Hi Karen!
It’s good to hear from you. I totally understand about the car ride. Sitting for extended periods of time is very painful for me. I have to recline the same way you do because I can’t take the pressure, either. I hope the Flector patch works for you. I think it does for me. Fortunately, I haven’t had any of the side effects from the Lyrica. I guess the 50 mg dose 3x a day is a pretty low dose, according to my Dr. I saw the Dr. at the pain clinic yesterday. He gave me an injection of Torodal to try to help break this pain cycle. I do feel better today. I’m 53, soon to be 54. I’ve been dealing with this for about 3 years. It is an awful disease. I’ll have to tell you about my brother when I have more time to write. He also has SOD and pancreas divisum and had a severe attack of acute pancreatitis about 8 years ago that landed him in the hospital for over a month. Weird, huh?
Hi Michele A.! I still struggle with understanding how the reply option works on here sometimes. I saw your reply to me, but there was no reply option to you, so here I am replying to my last message. I hope you find it.
So, I’m guessing your oldest daughter isn’t a teenager yet since she doens’t want to miss school?
I’m sorry if I asked a question that was too personal. You’re right, though. There is no such thing as TMI on this site. We’ve all been there. Believe me, the pelvic floor study is worse than the sample! LOL!
I’ve never had elevated enzyme levels throughout this whole diagnosis process. I did have highly elevated pressure in my common bile duct when manometry was done on the ERCP. Based on what I’ve read, I believe that to be SOD II. I could email Dr. Freeman for confirmation, as I don’t have any more appointments with him. I know he’d respond. At this point, I’m in pain management for symptoms. Unless something changes, that’s where I’ll be. I so wish there was a cure, but at the same time am so grateful for the doctor I have for pain management. I am feeling better still after yesterday’s injection of Torodol. One thing I’ve really noticed that seems to be consistent through these flare ups is brain fog. Does anyone else notice that when the flare ups are worse?
I hope your family continues to get better and over the virus. It’s been rampant through my office. So far, I’m the only one in the family who’s had it. I hope that means it won’t come back!
Take care!
Kris
Hi Kris,
I think that with each thread, there is a limit to how many times we can reply to each other – but no worries, I found you!
Nope – just started “real” school. I know – I have clearer memories of preferring being sick to going to school, LOL! (I do also remember being sad though – felt so bad for her!)
You didn’t ask anything too personal – just was trying to spare you the details!! LOL. Oh man I hope I don’t have to do the study you are talking about! Got the test over with. It can’t get worse, right? Hee hee.
You certainly don’t need to e-mail the doctor on my behalf. I am just trying to learn as much as I can. So did you decide to go for ERCP based on the pain and the failure of any other test to diagnose something? I have a hard time keeping the stories straight here but it seems like people who have ERCP without confirmed Type I don’t benefit from it and as a lot of the stories show, it winds up hurting more than helping.
I do feel less sharp during flare ups but I had thought that was just an overall result of feeling like crud.
Hope you continue to feel better. We’re hoping to banish the virus from our home once and for all!
Michele A.
I want to share my experience with the pain specialist, because I pray that it does not happen to anyone else. He told me that I need IV medications and electroconvulsive therapy for this pain. Then he asked me if I had any questions. I responded with I am not having ECT. Because I used the intials in my response he I knew exactly what he was talking about. I don’t think that he would have explained that ECT (“shock therapy”) is experimental and extremely contraversial with potential devastating adverse consequences. He proceed to tell me that I should not wait long. I called my primary care doctor and she certainly was not in favor of this and is going to refer me to another pain specialist.
Thank you for sharing that. I’m not familiar with ECT. It sounds really scary. I was advised by my doctor to not have celiac plexus blocks as they could make things worse, too. I’m glad that your PCP doctor is referring you to a different pain specialists. I had an experience with one that wasn’t good. There really are different approaches they take. The clinic I’m at now is absolutely wonderful.
Have a great day, all!
Hi Karen & others, Thanks for thinking of me…. I had my ERCP w/sphincterotomy on Monday morning 10/26/09. The Dr was very nice and said I had 3 stones in the duct, he cut the duct but did not put in stents, he said I didn’t need them. I stayed in the hospital til Tuesday in the afternoon. They were waiting for my liver enzymes to come down. I had nausea and pain on Monday. I didn’t ask for pain meds on Tuesday. I couldn’t have anything to eat or drink until noon on Tuesday. I had all clear liquids. I have to say, I was really hoping that I would feel a lot better but unfortunately I’m not yet …..maybe It will take a few days. I’m trying to be optimistic!
Hi! I’m going to reply to both you and Michele A. since I couldn’t reply to her on her response to me.
Laura, I’m sorry that you aren’t feeling better after the ERCP. Unfortunately, I had the same results. I was so hopeful that the procedure would take care of the pain and i’d be back to my old self. Well, not so much…I’m hoping that you have better results. You’re right though, it could take a few days and continue to get better! Please let us know how you’re doing.
Michele A. I also have a hard time keeping everyone’s stories straight. We’re all so similar, yet unique in our own way. I had the ERCP done because of pain, pancreas divisum that showed upon the EUS and MRCP and because an ultrsound showed that my common bile duct was enlarged. The ERCP showed highly elevated levels in my common bile duct. Dr. Freeman cut it and put a short term stent in. Unfortunately, it didn’t do anything. In fact, I think it’s worse since I had my gall bladdde out in May and the ERCP done in July.
Let us know what the results of your most recent test are. I really hope you don’t have to do the pelvic floor study. It is seriously THE MOST embarrassing test you could ever have done. It’s a bummer that we have to endure all of these tests to eliminate everything else to get to a diagnosis!
I hope everyone is well tonight. I’ll look forward to hearing from you again.
Has anyone heard from Michele in MN? I hope she is doing ok after her tests recently!
Take care. all!
Kris
Kris, Sorry it has been a few days, It is two weeks today and I haven’t heard anything yet. I had a few mild days, but today is rediculous!! When they came up with the conclusion that there wasn’t much else they could do for you, what is the process or what do they do within the pain management clinic? The last time I called last week about my ultrasound results, that was mention if the results of my function tests came back normal. This lovely weather we are having is NOT helping !!
Laura I hope your feeling better today, and everyone else is having a tolerable day, Michele/MN
Hi Michele! It’s good to hear from you! How frustrating to have to wait so long for test results. Carrie called the Palliative Care Center and got my first appointment for me. They are in the same building that Dr. Freeman is in. Everyone there is just incredible.They take a very holistic approach to this. I’m working with their social worker as well. We did It’s already helping me to relax a bit, at least. You will not have to worry about being prescribed enough pain meds. They are very understanding and take care of you. When I was there on Monday, I told Dr. Carter that I was in the middle of a really tough flareup. He gave me a shot of Toradol to try to break the cyle. I think it helped. I finally feel better today. The usual pain is there and I don’t have the baloon feeling under my ribcage for the first time in days. You’re right. Maybe this awful cold rainy weather contributes to how we feel. I guess it could be snow….oh, that’s right. it will be any day now!
Thanks Michele….I had a terrible night and went to my regular GI (I have only seen him 2 times) this am….He seems to be under the assumption that because I had my duct cut I should be fine…..He is telling me that it could take a couple of weeks….gave me a prescription for reglan and percocet but said he will not refill them….I didn’t feel like he is taking me seriously…..I told him the nausea is awful and worse than before the procedure….I’m discouraged not only from his response but I really was hoping that this would alleviate the symptoms…..well anyone with comments is greatly appreciated….thanks
Thanks Kris. I can’t imagine what that study would show or rule out. Ick! I am sorry you had to endure that!! Well, at the very least I made a few of my closest friends feel better about their mornings yesterday – they and my husband are the only ones who know about that particular indignity – oh, right, and all of you!! But sphincter friends share all, LOL.
Is the MRCP basically like an MRI, and good at detecting SOD but not the gold standard that is ERCP? Did you have it at the same time as EUS? I had EUS before gallbladder removal but after GB was out had endoscopy, which I don’t believe is as detailed. With all of these tests, I have yet to have a basic ultrasound (at least not since way before GB was out, to detect if there was a problem with GB). I would have to think that the other tests I have had would be as good if not better at detecting problem, but who knows.
I think I will hear back in a week – I’ll keep you posted. Hope you are feeling good.
Michele A.
Hi! Believe me, you don’t want that test! The worst part was the morning I got to the office, a guy arrived at the same time I did. He opened the door for me and was on the elevator with me. We exchanged a few words. When I got in to the clinic, they said they had a visiting dr. from China and asked if it would be ok if he observed. I figured, what the hell, I’m already going thorugh the indignity. What difference does it make if there is one more dr. in there? Well, guess who it was. Yup. The elevator guy…Embarrassing, for sure!
I had my EUS done in Jan. of this year. That showed pancreas divisum. The MRCP was done while I was hospitalized in June. It showed that my common bile duct was dilated. I think that the ERCP is the only true was to diagnose SOD. The ERCP was then done in July. That’s when he found that my pressures in my common bile duct were very high and diagnosed SOD. I’m assuming it’s SOD II based on the criteria for SOD.
I am feeling better finally today. Thanks for asking! I hope you’re doing ok as well.
Kris
Hi
I am also a sufferer of SOD. Over 5 years ago I started to take Duromine to lose weight and was astounded at the results , I lost 35 kilos in 3 months . I looked great and felt good about myself, then one morning woke with the worst excruciating pain in my stomach just under my Xiphoid and to the right under my ribs. The pain was that bad I rang for an ambulance. I was taken to hospital and was given morphine which only seemed to increase my pain , the nurse and doctor was alittle amazed by this. After about 2 hours in hospital the pain went as quick as it had started and I breathed a sigh of relief. About a week later it happened again I couldnt believe how bad the pain was , I’ve had 2 kids and that pain didnt seem as bad as this. The next couple of visits to the hospital I was being treated for the pain with pethidine, Endone , Prolodone supp, Buscopan , morphine , only to have the pain intensify. The treatment I got at my local country hospital was apalling , I was told by one inparticular Nurse that I was suffering with heartburn and that I should take Mylanta and go home, I was told by one doctor if I wanted “My drugs” to go to another hospital and was treated like a druggy. No one would believe how bad the pain was , I had worked it out that the only way to manage the pain was to have the gas , this was the only thing that would help, so as soon as the ambulance would come I was put on the gas. After 5 trips to hospital they decided to take out my gallbladder , I had no stones and even the doctor on his rounds the next day said he was surprised to find the gallbladder had no stones and hoped that was what the problem was.
Well surprise , surprise 2 weeks after having my gallbladder out I was back in hospital having another attack of severe pain , they told me that I must have a stone stuck in my ducts and they sent me for an ultrasound-nothing was found . I was sent home. In 3 months I was admitted to hospital 12 times . I was then sent to a Gastroindaoligest, he diagnosed me straight away with SOD ,I was so relieved to finally have a name and condition for what I had , and that I wasnt mad and going crazy . I had 2 ERCP done and my sphincter of Oddi had slits cut into it , to help it relax , the first one was done and i went 2 years pain free and then the pain started to reoccur and thats why the 2nd one was done, I was told that no more can be done as this would weaken the muscle too much and theres to much scar tissue. I was prescribed Nitrolingual spray which I spray under the tongue whenever I get pain , this helps to relax all the muscles if the body , it’s used for cardiac, it’s a wonder drug in my eyes .I take it every where with me I cant live without it , I fortunalty dont have many attacks anymore , I can sometimes feel a movement within my duct , I’m not sure what this is I havn’t been back to my Dr for along time I try to keep clear of Hospitals now, but when I feel this movement it feels like its food or bile or something moving through one of my ducts and when it does it is like something has prodded me in my right hand side , when it passes through it becomes really painful and thats when I spray my nitrolingual and instant relief .I was glad to find this site and read all about your problems with SOD. When your going through this you feel like your the only one with this problem and even the doctors dont know what it is and thats really scarry , I suffered depression because of it and that affected my family life . I hated being sick and not knowing what was happening to me. I live in Australia and I heard it’s a rare condition .Well anyway I thought I would share my story and best of luck for everyone and I hope you all can live pain free.
Moni
Hi Monique! Thank you so much for sharing your story. As you know all too well, the road to diagnosis with this awful disease is a long one. It is a rare and unusual disease. There are doctors out there who don’t believe it exists. I’m very happy to hear that this medication helps you. I am going to ask my doctor about it. Please keep communicating with us and let us know how you’re doing. You are not alone in coping with this!
Kris
Kris, I’m glad that they are understanding, I just wonder how that will work with me being up here. I supose I would get any meds from them, and if I needed a shot, they could just have a standing order in my charts. My regular Dr. up here is pretty understanding which is nice. I was about ready to go in yesterday for a shot, I had to leave work early, because I was having such a bad episode. I am at work today, but on my meds of course… I want to call Carrie again to see if she has heard anything, but I hate to bother her.
Hi Michele!I’m sorry you’re having a bad episode. I’m in the same boat. Yesterday was better, but today I feel awful again and am having so much pain. I’m faking it til I make it at work. Have you gone in and had a shot before when you’ve needed it?
I don’t see any reason why you couldn’t go to the Palliative Care Center at the U of M. They would probably want you to come in every 30 days or so for follow up, but maybe you could work out a longer time between visits since you live a couple of hours away. I really believe it would be worth your time to make the trip to go there. Let me know how you’re doing. I hope you feel better!
Guys ask your doctors about Glyceryl Trinitrate it is the wonder drug 1 , 2 or3 sprays under the tongue and presto no more pain it relaxes all the muscles within the body the only side affect is it gives a bad headache , but hell I can live with that . Take a nurofen for the heachache.
Moni
Hi Moni! Thanks for sharing about the Glyceryl Trinitrate. I am going to ask if it’s available in the US. If not, maybe there is something similar.It sounds like it works so well for you!
Kris
Kris,
Sub lingual nitrate spray is available world wide. It’s a very old treatment for angina as it dilates the coronary arteries relieving heart/chest pains. In fact it relaxes all smooth muscle of which the SO is one.
It can be purchased non prescription in Australia at any pharmacy and I’d be surprised if this was not the case in the USA.
You may need to use it more frequently than prescribed – 2 sprays every 6 hours. If you can stand the headache (it’s like a pimple when you have cancer to me) you can use it much more frequently – I’ve used it at 30 minute intervals. Be careful getting up or standing quickly if you have normal BP as it lowers this substantially and you can get hypotension, dizziness and blackouts.
Thank you, Brett! I will check it out, but I’d be surprised if its over the counter at a pharmacy here. You’d be shocked at what isn’t! My good friend is from England. He always comments that you can’t even get Paracetomol (sp?) here.
Apparently you can’t even get aspirin in the jungles either because the parrots eat em all.
Monique your story could be mine. I live in Australia as well
I have found buscopan etc no help at all. I was hospitalized when an endoscopy flared it up big time. Turns out it was the anesthetic AND the morphine they gave me that the hospital.
Fortunately it was diagnosed later and they also put me on the sub lingual nitrates and off morphine. I find it helps me quite a bit – but mostly takes the edge off for 30 minutes or so. When I get a bad flare it doesn’t work as well and wears off quickly. You can get patches that last longer but they tell me you can accommodate the their effect – so I’m holding off as a last resort.
Even though trinitrate is a nonspecific smooth muscle relaxant – I’m fairly confident if it gives you relief (and buscopan etc doesn’t) it’s the SO – and your case helps confirms my suspicions.
I have found a leading expert in Australia – DR James Toulli in SA. He’s the ONLY one in Australia that has similar credentials to the specialists USA docs and can perform manometry testing.
I’m concerned by the number of people here who get relief with sphincterotomy only to fnd it return and reclose. The quoted numbers are 10% in 10 years. I think the docs are doing incomplete cuts out of fear of complications as the reports here are way more than 10%.
Were you type 111 ie no positive enzyme tests, normal ducts etc?. Did they cut the SO alone or the pancreatic sphincter as well? And how did they decide to do the cut? I’m guessing they just took a shot in the dark since we don’t have manommerty anywhere else than SA.
I’m scheduled to see DR Toouli’s partner in 2 weeks – he just herniated his lumbar disc.
One other quick question Monica – did you get pancreatitus after any of the ERCPs?
Hi, I just try and read this hear and there when I get an opportunity. I just wanted to metnion a couple of things…I was diagnosed with SOD type 2 and had an ERCP done they cut the bile duct and my pancreatic duct (which had the highest pressure) and put a temporary stent in. One of you had mentioned nausea so much worse afterwards and I agree with that as well..I had mentioned that in my prior posting. I’ve learned through trial and error what foods to eat or not eat. But, my pain is nothing like it was before. I do every once in a while get that pressure feeling under my right rib cage but it is manageable. So i’m wondering if from getting cut this somehow ‘messes up’ the flow of things which causes nausea? My nausea is slowly getting better I am now 6 months post ERCP and have maybe had 2 bad nausea days in the last month.
Brett, I know you didn’t ask me, but I did get pancreatitis after my ERCP, but nothing more since. Also I wanted to mention that when I reserched SOD I found that Morphine does make your pain worse, can actually put you into a pain attack. I found one dr who researched and that is actually a test they do on patients to see if they have SOD. I know when they gave me morphine the first time i was admitted it spun me back into an attack and had nausea and vomiting. I would search SOD I believe it was on the Indiana University website. I went to Dr. Fogel and he did an awesome job with me!
Hope you all are doing good. Thank you for sharing your stories. It is nice to see I am not alone.
Have a good evening!
Hi Brett
I’m not sure what procedure they used to cut my SO , I was abit niave to what they were actually doing to me , all I know was that i didnt care what they did just as long as I was pain free . My liver enzymes was positive and even now I occasionally still have my liver enzymes checked I have never had pancreatitis and didnt suffer with this after my ERCP, but I also get my pancreatic enzymes checked aswell , I do this for peace of mind. The only side affect from the ERCP was I was tender and sore and even for along time after , it was even hard to wear a bra, and cross my arms, as this area of my torso was very tender and sore .It sounds like you are still going through the hard times , I’m curious as to how long you have been suffering with the condition?Did you suffer with pancreatitis and where did you have your ERCP done? I’m so glad to be talking to people who have suffered as well , I am studing nursing and when I was listening to a lecture on the digestive system and about the SO, I googled and found this webstie , I wish they had something like this when I was 1st diagnosed, I remember looking up the condition and reading about pancreatis and freaking out , I thought I was going to get cancer of the pancreas. My doctor really didnt tell me too much at all , or then again he might of and I wasnt listening.You sound like you know alot about this condition, and have tried the same medications. Before trying nitolingual my doctor tried me on a calcium -channel blocker Adalat, this gave me the worse tachycardia and palpitations . Anyway good luck with the manometry test and please let me know how it goes , are you having to go to SA for this?It’s been good talking to you. I am learning alot from this website .Thanks
Moni
Thanks Moni.
I’ve had intermittent bouts of severe pain for 30 years. But It always resolved after a day or a few hours. Recently I had a endoscopy and got a severe flare up that hasn’t gone away in 8 months now – though it is slowly improving.
I have not had any further intervention – gall bladder intact and no ERCP. I am scheduled for ERCP manometry in a week and am a scared witless I’ll go through the same pain I had post endoscopy – though they assure me that was the anaesthetic.
It was only recently I was diagnosed with SOD but I have no positive tests, no dilated ducts, pancreatitus etc – making me type 111 – and there’s a lot of debate as to whether type 111 SOD is real or not and it does seem a lot of those diagnosed with SOD have IBS variations that don’t respond to sphincterotomy.
The big question is whether pain can arise from the SO – without elevated enzymes or dilated ducts. Some think it can others don’t. Long term studies appear to show only 8 % of those with type 111 (even with positive manometry) report improvement at 2 year follow up.
There are at least 2 type 111 folks here who reported sustained improvement with ERCP – so that seems to refute the 8% right off.
I also tried nifedipine (Adalat) and this definitely made me worse as well.
I’m going to SA because it is the only place in Australia that has manometry – can you believe that – not Sydney or Melbourne?!.
The docs here in QLD basically said if I can’t stand the pain any longer I could beg then to do the ES – ERCP. When I asked how they’d know which sphincter to cut without manometry they said they’d cut the SO first and if that didn’t work they’d cut the pancreatic duct next.
Then the doc got annoyed at me for asking questions and doing my own research, and sent a letter to my local physician saying my main problem was I’m focusing on the problem too much and doing too much research – basically it’s mental as well.
So I decided QLD is not the place to have this treated. I was going to the USA before I found Doc Toulli was a world expert and has the equipment and experience here in Australia.
Thanks for the kind wishes. I’m a bit concern I won’t get to see Dr Toulli now but they assure me his partner is just as good and does liver transplants as well. Fingers toes and everything else crossed.
Brett,
Hope things go well. I did not get Post-ERCP pancreatitis with the billiary mamometry (elevated at 150-200mmHg) or billiary sphincterotomy. They did not touch the pancreatic sphincter with that ERCP. I am not sure if other people had that experience. Hope that helps.
The key here is that as long as the doc doing your sphincterotomy is very experienced
(at least 2X/wk) and that he has been doing them for light-years, then try not to worry. JUST MY OPINION.
Best Wishes & Prayers,
Gracie
Thanks Julie and Cristie.
Seems pancreatitus can occur when you least expect it but the worst numbers are about 30%. The best are as low as 4%.
The operator, the hospital and the support team all seem to be significant factors in reducing risk. Just having SOD unfortunately elevates your risk quite a bit but you definitely want the doc to be doing more than 100 a year.
The treatment after you get it is at least as important.
hello, my name is cenola friends called me cece. your onfo on this sphinter is so complex. in june 2009 agastro doctor told a needed this sphinster done but I dont know what will happen I do know from research, this ism serious, cancause pancretitis. I am glad you are able to go to the best, this is what i want to do. they have a very good clinic in Flemming Floridia. Its on a islandthe clinic name is Flemming islandsurgery clinic,borland groover home. the phone number is 904-644-0700. I WISH I COULD FIND OUT MORE IN AUSTRAILA THAT GOT TO BE GREAT. GOD BLESS YOU. CECE. OH ALSO I HAVE LUPUS. OH HAVE YOU HEARD ABOUT A procedure called fundoplication where they wrap your stomach around your esophagus. this is a bit much.
Cece,
A fundoplication is used to surgically treat GERD as a result of a hiatus hernia. The hole in the diaphragm (esophageal foramen) enlarges and allows a portion of the stomach to slide up through.
In a fundoplication the hole is reduced and the top of the stomach is wrapped to form knot which cannot pass into that hole. This is typically an endoscopic procedure and relatively safe in experienced hands.
Typically though GERD can be well managed with PPI medications and a fundoplication is a last resort for the worst kind of hernia that strangulates .
Lupus – or SLE is a disorder of the immune system. Cortisones are most commonly to treat SLE with success – but nasty side effects. There is some recent research into using biomodifiers which block an immune system stimulant called TNF (tumor necrosis factor).
The drugs are called embril, or remicade in the USA but are quiet expensive and experimental for SLE. They have been used with great success and minimal side effects in other autoimmune diseases like rheumatoid arthritis, Chrones etc.
Doc are reluctant to mention these drugs and insurance companies slow to cover them – but it’s worth asking.
Hi Brett!
Pleaselet us know the date of your procedure so we can all be thinking of you and keeping our toes, fingers and everythng else crossed, too!
Shame on that doctor for admonishing you for doing yuor own research. We all know too well how we have to be our own advocate! Who knows what would have happened if you’d stayed with the drs. in Queensland.
I was fortunate enough to go on holiday in your beautiful country 3 years ago. We went to the wine country in the Hunter Valley, visited the Blue Mountains and then spent 10 days at a timeshare halfway between Sydney and Melbourne in a small town where my cousin had a timeshare. What a fabulous place Australia is….except for the 16 hour flight! in spite of the flight time, I’d go back any time.How faar is SA from where you live? Having been there, i have an appreciation for the size of it! I, too, am surprised that these doctors aren’t in Sydney or Melbourne. The good news is that they are in Australia and you don’t have to travel to the US. I’ll be thinking of you and sending lots of positive energy your way! Thanks for all you do to help and support all of us.
Best,
Kris
Many thanks for the kind wishes Kris,
I’m doing somewhat better now and really want to discuss things with the Doc before proceeding. I can almost live with it now if I have to.
I do have the ERCP with manometry booked 2 days after an initial consultation. The doc will need to have the right answers before I proceed and I don’t care if she gets annoyed as well – but I’m expecting a female doc wont be on the ego trip many male docs are.
The first specialist did help me at first with diagnosis – but became annoyed when I refused to have a second endoscopy – 4 weeks after the first one flared me up so badly – got a second opinion -and asked a lot of questions. What annoyed me was he sent a derogatory letter to my local doc here. This doctor is one of my main referral sources and he could have seriously affected my business..
Unfortunately this is a common behavior – you just need to recognize it early and move on to another doctor ASAP. You must do your own research and ask a lot of questions. I’ve seen what can happen if you don’t. Any doc who gets annoyed by this is not the doc for you.
I’ve only been back in Australia a few years after living 20 years in the USA – mostly Hawaii. I now live on the coast 3 hours drive from Brisbane OLD – which is about a 3 hour flight to SA – much less then the first trip to Detroit the first time I came to the USA . Brisbane to Sydney, Sydney to Hawaii – Hawaii to San Fran, San Fan to Chicago, Chicago to Detroit – 36 hours all up – talk about jet lag.
Many thanks for the kind wishes and positive thoughts.
any information about where you are going, whats the time limit please let me know. thank you so much.
hello to anyone that can help me to understand this ERCP this is my diagnosis my gallbladder was removed in 2006 .I have pain still in the big cut i recieved.this pain is a pain I wouldnt wish own anyone.I am just been diagnosis in June. the doctor wanted to surgury in
aug. but I did not have it done this was news to me. thank you CEE
Brett, I pray that everything goes well for you, and you get some kind of relief. That Dr, was obviously intimidated by your knowledge. Lol I know we appreciate it. Well I am impatiently waiting a call from the specialist that did my pancreatic function test. Dr. Freeman’s nurse called me back and said some of the results are in, but they don’t say if they are negative or posative, and she wasn’t able to understand them. So as soon as I know I will be back on to post what I find out… Good luck!! Michele/MN
Many Thanks Michele,
Will all the well wishes I’m almost certain to do just fine.
The doc did say,”with all the research you are doing you know more than me” – which I thought was a strange thing to say and didn’t inspire much confidence . I replied.” well if it was a simple, safe procedure I won’t do any research at all – but your the one that told me how dangerous it was – wouldn’t you do the same if it was you?” He didn’t seem to like that much.
From what I can ascertain, pancreatic function tests are complex and interpretation is equivocal – levels of enzymes like amalyase are used and there are normal ranges that fluctuate pre and post food so the nurse was right to leave it to the doc.
Pancreatic duct pressures as far as I can tell should be the same range of normal as the SO – at 40 mm of HG. Typically this would be cut at the time of testing if the pressures are high. High pancreatic duct pressures due to sphincter dysfunction is a known cause know for what was previously called idiopathic pancreatitus.
They used to test the biliary duct first and cut that only if pressures were found to be high – unfortunately high pressures are common in both sphincters – about 30% so doc Freeman is now testing and cutting both routinely. Which may explain his considerably higher success rate in treating type 3.
Your in very good hands. I just hope my new doc will be as good.
Dear Brett….I hope your procedure goes well..I can’t imagine suffering all those years with these terrible symptoms. I’m very new to all of it and sick of it and I’ve only been sick with it since 4th of July……I was very scared also…I had my ERCP w/sphincterotomy last Monday…I had some pain afterwards but not too bad….I wasn’t allowed to eat or drink for 24 hrs…I did have my usual nausea and bloating for the lst few days…but Sat & Sun for the lst time in 4months I had no nausea!! Today, I have been having more pain again, the dr said it may take a few weeks for everything to calm down.
Hopefully it will help you…Keep us posted….I would like to hear from anybody that has had it done, if it takes a few weeks for improvement. I’m trying to be optimistic! keeping our fingers crossed
Brett..you are in my prayers that your procedure goes well and the recovery is minimal. I am with ya on being scared. I told the dr that I’ve had just enouogh of these to know what to expect so could they give me something to relieve the anxiety before I go in again in Dec. I am hoping that you don’t have the same problem but are they using different anesthia this time? Please keep us posted on how you’re doing..we all do care about each other and need to stick together with this. I feel like I have gained a whole circle of “spincter friends”! It’s just awesome to be able to share with everyone on here and get the words of encouragement and understanding from everyone.
Laura..I’m not sure that you have read my story but just wanted to mention to you that after my first 2 spincterotomies I was completely pain free for 2 years in between! It was awesome. So hang in there girl it will get better I’m sure of it.
I read you stories Karen and that’s the main thing that encouraged me to proceed – and kept me going. I am concerned about the frequently reported re-occurrence of symptoms being far greater here then the 10% in 10 years the docs claim.
Watching doc Freeman do the surgery it’s hard to imagine any sphincter reclosing with the extent of the cutting he does. So I’m a bit confused.
I had an attack again yesterday. I took the spray as soon as I felt the symptoms come on and it relieved the pain in about 10 minutes – I kept it up every hour (way more than allowed) and got though OK.
Given that relaxers for the stomach like Buscopan (hyoscamine) are no help at all it’s hard to imagine any other source of pain in my case than the SO.
So I’m quietly confident the ES will do the trick. I’m not scared of the procedure so much as the pancreatitus that might happen after.
Thanks Laura,
I think you can take the 2 day COMPLETE resolution of nausea as a very promising sign!!. After the surgery there is a lot of swelling that will take some time to resolve so if your getting substantial improvement his early that’s terrific.
In the cases I have read where this procedure worked the story is much the same – almost immediate relief with some reoccurance then progressive improvement.
I’m quitely confident for you.
I can handle somatic (body) type pain no problem. I’ve walked 2 miles with broken ribs and a thoracic crush fracture. I’ll take that any day over nausea. I don’t know why but I just can’t cope with it at all. If they can get rid of the nausea I’ll be delighted regardless of other pains.
I just hope it’s the same for you.
Hello this is CEE, again I live in ILLINIOS In a town called BellivilleI am trying to find out the best Surgeon that can take my case. The pain is rotating from upper right shoulder to lower back. The closes state to me is St. Louis Mo. The doctor that made this diagnosis is not capable in this type of surgery. I have read about this Doctor Freeman hes seems wonderful. I have posted two comments on site, this is my first time ever doing this, I hope you can understand this writting. thank you for any replys . Cee.
Cece,
Indiana university medical center in Indianapolis sees more pancreas cases and SOD cases than anywhere in the world and you are right next door !
Cece,
Pain radiating the the right shoulder and back is classic for the gall bladder. Since yours has been removed – and post GB removal ,SO dysfunction is common – the SO is the next most likely culprit.
Removal of the GB cuts the nerves that can control the SO muscle and about 10% of people (commonly women) get SOD post GB removal.
My pain is all epigastric – and mid line between the sternum and naval. Apparently this is quite common as well.
Hi Brett! Thank you for this simplistic explanation.
I did not know after all I’ve read that removing the GB cuts the nerves controlling the SO. No wonder removing it causes additional problems in those with the possibility of SOD. Dr. Freeman told me that removing it can make those with suspected SOD worse, but didn’t explain why. This makes complete sense to me. Thank you again for all of your research and the information that you share. I’ve got your appointment dates noted on my calendar and will be sending you positive energy and warm thoughts for success.
All the best!
Kris
Dear Brett,
As an acupuncturist I can tell you, the midline between the sternum & naval is called the “Ren” channel. This is an extremely painful zone to be massaged during a flare, but you may be able to take acupuncture to these areas quite comfortably. I acupuncture myself as treatment for SOD and have trained my signifigant other to place needles in places in my back that are especially for Pancreas / Spleen. (In Traditional Chinese Medicine, they are the same organ of energy) If I understand your posts correctly, you are in South America now, if so perhaps you can try some accupuncture while you are there. Also, it did cross my mind, Brett, is it possible you were received so well by the treating specialists in the states because they finally had a guy to work on ? After all the rarer bird is always the most welcomed !
Nymphaea
What about pain that feels like a band running all across the abdomen and burns. Anyone have this? My understanding is that it is referred pain or visceral.
Comments welcomed please!
Certainly unusual symptomatology and not classic for SOD.
Have you been checked for chronic abdominal wall pain?
Here’s a study:
Chronic abdominal wall pain (CAWP) occurs in about 30% of all patients presenting with chronic abdominal pain. METHODS: The authors review the literature identified in a PubMed search regarding the abdominal wall as the origin of chronic abdominal pain. RESULTS: CAWP is frequently misinterpreted as visceral or functional abdominal pain. Misdiagnosis often leads to a variety of investigational procedures and even abdominal operations with negative results. With a simple clinical test (Carnett’s test), >90% of patients with CAWP can be recognized, without risk for missing intra-abdominal pathology. CONCLUSION: The condition can be confirmed when the injection of local anesthetics in the trigger point(s) relieves the pain. A fasciotomy in the anterior abdominal rectus muscle sheath through the nerve foramina of the affected branch of one of the anterior intercostal nerves heals the pain.
Brett,
Thanks so much for all your info. My GP and the Gastro doc have been confused because my symptoms are not always typical of the SOD III, but I have some. After an hour of talking with my GP this morning (he had no one else scheduled), he thinks I could have either CAWP or some major scar tissue adhesions because I have had 6 surgeries in my 58 years of life. The pain always starts in the appendix/ovary area where they were removed years ago. I am not sure what is going to happen. I have a good GP and he is going to talk to some other doctors to see what they think. Either way, there will be no surgery unless that is the last resort and not for awhile. Everything else is going to be checked including CAWP. I printed the post and took it in this morning. Something lower is triggaring the common duct and making it scar over or spasm. I hope all goes well with your doctor visits and you can find some relief. I am about to drop after a week of intense pain and living on pain meds and hyocosamine.
I get that kind of pain periodically. Sometimes it feels like it is so tight that it is going to burst. I don’t know what it is……….but I do get it. I am in a flare-up right now after having a month or so with things quiet. I use hyocosamine, but after a week this time it is not helping much. I have been reading the posts as they come through and my husband wonders if it is they way they take out the gall bladder now that could cause some nerve damage. Working through little holes may not be the best way after all. I wish all a good day and an answer to this painful problem soon.
Kris,
Just had to say thanks for all the kind words from you and the information that you have shared. Do you mind if I tell my pain management dr what you have found that works and how they are treating you when I go to my visit on Nov. 20th? I just really don’t know what to expect. I hope that he is understanding about SOD. I don’t want to be drugged out and not be able to function and work but like I told my husband..I just want to be able to take a pain pill and have the pain actually go away! I have this pain daily and it sure does get old.
No problem at all! This pain does get old…quickly. The regimen is helping, but i did just go through another major flare-up last week. The meds helped, but it still was really rough. I
felt so good for the first 4-5 weeks. I guess I fooled myself into thinking it would be that way all the time, forgetting that major flare-ups do happen. The good news is that I’ve come out of it and am back to feeling better and managing as before on a daily basis. Let me know if I can help with anything more before your appointment!
Hello everyone, I received a call this morning, and was told my enzyme levels were ok, but my pancreatic bicarbonates are low, and I will have to wait for Dr. Freeman to explain this and see what we do about it. I have looked some information on the web, but it’s confusing. Dr. Freeman is out until next week, but I left a message with Carrie his nurse. So I am going to continue my research.. I hope everyone is having a tolerable day. Michele/MN
Interesting. I haven’t heard anything about this at all. I know it’s frustrating to have to wait for explanations. It’s been a long wait for you already! I hope you’re feeling ok. Thanks for keeping us updated as you get information. Take care, Michele!
Kris
Kris, Well I bothered them again today, because I was hoping the report could be sent up to my regular Dr. up here, but Dr.Ladell’s nurse said he hasn’t completed the report, so I will wait some more. But she did describe it differently she said pancreatic insufficiency, which I found alot more information on the web for that. Michele/MN
Hi Brett
I was astounded to hear how long you have been suffering on and off in pain , you poor dude. I will think about you next time I have a pain episode and think how long you have suffered. You must live up the coast as you are a 3 hour drive from Brisbane , I live at Laidley . I’m the same as you , have little faith in the Qld doctors, I try to avoid going to the doctors , the only time I will go is to get a referral for bloods. I have had such bad experiences with the doctors and hospitals. I know one thing is that when I become registered I will have a lot of sympathy and understanding for anyone that is admitted with pain in the upper gastro area. You must be getting close to having your ERCP manometry done , what date are you having it done. I wish you all the best and dont stop asking questions , just because they have the degree doesnt mean they know everything and it’s good to hear that your testing that knowledge. I like reading your posts your very knowledgable, makes me think you might work within the health industry, don’t worry if the doctors dont appreciate your research , because I do and it sounds like everyone else on here does to. Good luck it sounds like you’ll be in good hands if his partner does Liver transplants, it sounds like he’ll know what he’s doin. Let me know how you go and I’ll be thinkin of you .
Moni
Many thanks for the kind thoughts Moni,
I live at Rainbow beach now North of Noosa (after 15 years on Maui I couldn’t face Brisbane) but used to go Hang gliding near Laidley (at umm… Minden I think) when I lived in Brisbane many years ago. So I’m familiar with the area.
One of my patients went to see one of the top GI docs in Brisbane at the PA hospital. The doc immediately recognized the problem – and the fact that he could not deal with it in Brisbane – and sent him to SA and Doc Toulli. The patient showed me the referral and in it the doc describes Toulli as a world expert – and recognizes his own limitations in QLD.
This was about 2 weeks after I did the research and found him myself and made an appointment . I thought that was an amazing coincidence and it immediately convinced me I had made the right decision.
What annoyed me no end is the specialists I had seen in Brisbane NEVER mentioned this possibility – even when I directly asked. At best they said manometry was available in Adelaide but didn’t recommend I go there or offer a referral – even when I said I was considering going to the USA .
When you read the research it states unequivocally for type 111 you must do a manometry test – no ifs or buts.
I will say the QLD docs did get the diagnosis right and were correct to be conservative – this is dangerous intervention especially in the wrong hands. The meds they prescribed were spot on.
What I can’t figure is why they can’t get manometry equipment at other centers in Australia – it’s just a sophisticated pressure monitor that’s it – probably far less expensive than an MRI. Even in the USA it’s only available at specialty centers. One thing I’ve learned from all this if you have suspected SOD you must go to a specialty center. Local GI specialists are just not up on SOD well enough and the statistics clearly support this.
The incidence of post ERCP pancreatitus is far lower in specialty centers.
I’m glad my comments are appreciated and I do what I can. My area of expertise is orthopedics so what I write should only be a very rough guide and no substitute for real education and experience in this area . I do use research data, not opinion to base my comments, but even this can be inaccurate or out of date.
Interestingly, every thing I have read of Doc Toulli’s is supported by the research – and he’s done some of that research himself. I’d thoroughly recommend you doing the same if you can afford the trip.
I see the Doc on Nov 10 with the ERCP scheduled 2 days later if I’m happy to proceed. I’ll let you guys know how it goes as soon as I get back.
I have not been on for a few days and have had a lot of catching up to do!
Brett, thanks for all of your helpful information. I really hope things go well for you this time. Keeping everything crossed for you. Shame on doctors for scolding you for educating yourself. I understand that they don’t want to deal with people who go off on a tangent and convince themselves that they have every bad thing on earth, but just from reading your posts I can tell that you are very intelligent and educated and that you have done very good, targeted research, and that is not something for which you should be punished. I think some doctors are holdovers from the old days where they were to be revered and not questioned. I am so happy mine are not like that but sorry that you had to encounter ones who are.
I am surprised that mamomentry is all but mandated for Type III unless I am misunderstanding what that is (I am pretty much a newcomer to all of this). Perhaps it makes sense once you take into account that centers that specialize in ERCP have much lower risk of complications. The studies I read showed less than ideal success rates on patients with Type III. However, I absolutely can see the willingness to do it given the alternative of trying to live a normal life with the pain. I am so with you on the nausea too. Worse than the pain I think.
Michele/MN – Speaking of having to do your own research – I feel so bad for you that you have been left hanging with this. I am no Brett but if you want help trying to figure out what you may be dealing with, I can try to help you with the research. Either way, please let us know what you find out.
Laura, I hope you are feeling much better. So glad there are positive signs.
Kris, hope you are continuing to feel better.
And Karen – you drug seeker LOL – hope things are good with you.
Thanks to everyone for sharing their stories. Hope everyone is having good week and apologies if I am snubbing anyone – not my intention at all!
Michele A.
It is true that some doc feel you don’t trust them if you ask questions. The fact is that they are probably right in my case. I’ve seen far too many mistakes to put my blind trust in any doc.
The problem with type 111 is it mostly diagnosed by the absence of positive tests. But there are numerous conditions that can also cause the pain and not show up on tests. Acalculous GB and IBS variants for instance. So it’s hit or miss.
The problem is the only vaguely useful test is manomerty. But the problems with manometry are threefold.
1. Positive manomerty only indicates patients who might benefit from ES and studies show only a 50% success rate of ES at best in patients with positive manometry. One researcher claims on 2 year follow up – only 8% of patients reported sustained benefit.
2. So Manomerty is only somewhat useful and predictive- false positive, or at least patients who gain no benefit from ES can occur despite positive testing about 50% of the time. However false negatives are also possible. On repeat testing of patients with negative manometry tests about 20% were later found to be positive and later benefited from ES.
3 .The procedure itself carries a risk of pancreatitus .
So we are left with testing – risking pancreatitus, cutting when only 50% get benefit – and not cutting negative testers who might later turn out to be positive. Or just going in and blindly cutting the SO and hoping for the best.
If the manometry test is negative and they don’t cut, you still have no solution to the pain and one study has shown that in patients who have the sphincter cut post ERCP there is a lower risk of severe pancreatitus than those who do not. I think it’s safe to say this most likely also applies to manometry as well. So manometry without ES likely has a higher risk than with it. So we may in fact be better off just blindly cutting.
It’s a very tough call and Botox may be a solution here. It’s not selective for either sphincter but it certainly indicates those who will benefit from ES with a high level of accuracy and low risk of pancreatitus.
Personally where I think manometry is of benefit is in checking both the sphincters. I think a main reason for ES failure is the pancreatic duct is not assessed and treated. 30% of all cases involve both sphincters and another 30% involve the pancreatic sphincter alone.
So potentially 60% of patients are not being properly treated if the SO is cut alone – this make the success numbers for ES hardly suprising . Doc Freeman reports much higher success rates testing and cutting one or both as needed and they only way to tell which one or both – other than blindly cutting both – is to test.
Most docs don’t want to get involved with the pancreatic duct as pancreatitus rates are higher and it must be stented with small soft stents using very thin guide wires which is much more difficult.
So ultimately I think you must test both ducts and treat appropriately to get any chance of success.
Another piece of research I just found by Doc Toulli is there appears to be a variety of SOD that doesn’t respond to ES. As yet they don’t know how to detect this or how to treat it. To me if you respond to relaxants like nitrates the cutting the sphincter should work as well.
So in type 111 we need far better selection criteria, cases of acalculous GB and IBS need to be detected early and ruled out. Doc Toulli uses internal motility monitors to rule out visceral IBS type motility disorders in suspect cases.
We then need to routinely assess and treat both sphincters at specialty centers. Until this happens we’ll continue to see poor success rates with type 111 and folks suffering unnecessarily from unbearable pain.
If more men got this problem the solution would have been found years ago.
Boy are you ever right on you’re comment regarding if more men had it, it would be more researched. I’ve posted before about how Dr. Freeman told me the same thing. The one thing you mention is regarding cutting/testing both the sphincter and pancreatic ducts. He said he didn’t want to cut the pancreatic ducts in my case as it could make things worse. I had very high pressures in my cbd, but he just wouldn’t go into the pancreatic ducts for the reason noted, even though I have pancreas divisum. I did really well on the new medication regimen for about a month. Then another major flare up hit and I feel like I’m right back where I was. Each one of these major episodes feels like it takes longer to recover from and I’m let wondering what it is doing to me. I really need to get in touch with him and ask more questions. Why does he say in some cases it’s appropriate to do both, yet he tells me it’s not. I’m sure there is a case specific reason why. Now I want the answer to that. As always, Brett, you have great information, facts and research to substantiate your position. I am really looking forward to your procedures, first andforemost in the hopes that it helps you. Secondly, to hope that what you learn and experience can help the rest of us. Sorry. I really don’t want to make you a guineau pig!
Again, I’ve got your appointment dates noted. I will be sending positive energy your way and will be anxiously awaiting your posts regarding how your doing. I wish you the best of everything. Thanks again, for all you do for us!
Kris
Dear Kris,
I have pancreas divisum too with sphincter of oddi dysfunction and both my minor and major papilla had sphincterotomy with the minor papilla getting a temporary stent. My ducts were so small, manometry was never possible. Yes, I did go to Indiana too. But what struck me in your note was when you said every subsequent attack is worse and this is getting worse with age. Yes, in my case as well. I don’t know how old any of you are, but I’m 43 and the whole thing started when I was 37. As I read all your letters, I can’t help but wonder if any of you had Hepatitis B Vaccines and if the shot coordinated at all with your attacks ?
Dear Nymphaea,
I did have hepatitis B Vaccines, but I was already having attacks prior to them.
Thank you Shelly that is helpful information. I think if we look at the evidence just this little group brings forward. We can see genetic patterns of DZ, medication caused patterns of DZ as well as surgical causes of DZ. Now, only through researching all people who have this can we start surmising the percentages. Do women really get this more then men ? Or are men suffering in silence or numbing it with drugs or alcohol or even being misdiagnosed and being medicated without researching and analysing it further so it can be ignored ? I enjoy medical research and if I take on this task maybe a questioniere I create will be coming your way when you least expect it. It is one thing to hope for a cure, it is another thing to actively work together and find the answers.
Thanks Brett. It is quite discouraging that the options are so limited, and the available test not even very reliable at diagnosis. I was not aware that the manometry could yield false negatives. I also have read about the fact that not evaluating the pancreatic sphincter may account for the fact that many people do not improve after ES (and the reasons why doctors are loathe to go near it). It is a very tough call because we all are trained (and probably instincts are) to believe that severe pain is a sign of something very wrong and that you need to seek treatment – and here, the fix may be worse than the problem.
Were your endoscopy results normal? (I know you suffered terribly afterwards – so sorry to read about that.) My last endoscopy showed a lot of fluid in the stomach and follow up tests thus far have failed to determine why. In my layman’s mind, I wonder if it it can be connected to SOD – as the sphincter is squeezing so tightly, it can cause a back up of sorts. Just wondering if you had something similar or had any thoughts on my made-up theory.
I think you are right about how different it would be if this were a man’s problem. I cynically wondered aloud about that in an earlier post and Kris replied that Dr. Freeman said the same thing. That is a sad state of affairs. Some people point to breast cancer as a disease that gets a lot of attention and research to refute points like that, but it is sad that this is all anyone can point to (and perhaps this is unfair but we are not seeing a cure). I think when women have symptoms that defy traditional diagnosis, they are just too quickly written off.
I really hope that your procedure goes well for you.
BTW I visited Australia almost 15 years ago and did not want to leave! I had too little time there and was unable to see as much as I would have liked. It seems like it would be a wonderful place to live. Of course, ugly American that I am, I am not sure I ever would get past feeling I was on the opposite side of the world from everyone!
Hope you are having a good week. Please keep us posted on your progess.
Michele A.
Thanks Michelle.
I don’t know about ugly Americans. I got treated (not medically) better in the USA than anywhere else I have ever been, including Australia – the people were wonderful. This in in one of the supposedly worst places – Detroit Michigan. Mid west hospitality is real. I still write to friends there 15 years later. I think Americans get an undeserved bad wrap by people who focus on the negatives only.
My endoscopy found nothing really – just some heal thickening around the esophageal sphincter from GERD treated with PPIs. They took some biopsies and found no celiac or other problems as well. They did only get to D3 though.
Manometry can definitely give false negatives. Much the same as blood enzyme testing. The is why they try and do the blood tests at the time of an attack. It’s a bit hard to do the same with manometry testing so the sphincter may not be spasming at the time of testing. Also medications can influence sphincter pressure.
One specialist told me I didn’t have to worry about the pancreatic sphincter because my enzyme levels were normal. I didn’t bother to say the same tests for the liver enzymes were normal as well so why assume one is a problem and the other not on the basis of no evidence for either?
In the video Doc Freeman says the patient had pressure levels of 180 in the pancreatic sphincter – then clearly states enzyme levels were normal and she is a type 111. He cuts both then states she has about a 60% chance of relief. So obviously he believes the problem can occur without elevated enzymes or dilated ducts and I’m inclined to believe him.
There was somebody here a while back with stone blocking a duct and still the enzyme levels were normal.
Well I’m leaving for SA today and won’t be online again for a while. I’m nervous already. Thanks everybody for the kind thoughts.
Ok. Just on a fun note. Living in Minneapolis, the heart of the Midwest in my book, I have to say that it is true that Midwest hospitality is the best!
Seriously, Brett, if you ever want to come here and see Dr. Freeman, I will do everything I can do make your visit as easy on you as possible. I am more than happy to help coordinate appointments and anything else that will make your visit easier for you. However, I know that you have your appoitnments in SA next week. I am hopeful that you experience good results and will be looking foward to hearing how everything goes for you.
Take care!
My nightmare began June 2004, exactly 90 days after my first Hepatitis B vaccine. I developed right upper quadrant pain just under my right ribcage. After a painful ultrasound and hida scan, nothing was determined and in 3 weeks or so it went away. 6 months later, December 2004 it came back with a vengence after eating fatty food. After numerous ER visits and another Hida scan , it was determined, that my ejection fraction of my Gall Bladder was too low and my Gall bladder had to be removed. I HAD NO STONES OR BLOCKAGES / PERFECT LABS / PERFECT CAT SCAN. But I was told I could have Sphincter of Oddi disease but I was only 38 and too young for an ERCP in absence of findings on tests. Basically I was told by a professor of all the GI’s at the hospital that my Gall Bladder was failing and had to be removed. So, it was removed January 2005. 24 hrs. after I got home from the hospital, I had to return to the ER with severe pain in the same spot. I had a leak of bile into the FOSSA where the gallbladder was. With antibiotics I was sent home again. 3 ms later I had my 2nd Hepatitis B vaccine. Had trouble moving my arm and fingers for the next day and remembered the experience from the prior year. 1 ms later I had my 3rd Hepatitis B vaccine and noticed tea colored urine and yellow stools, the next day. Thought it was something I ate and left for India for 2 weeks. 1 month after my return from India (Aug 2005) I came down with pneumonia. On my 10 day checkup my right upper quadrant area was painful upon examination. Figuring it was a reaction to the recent medications, I figured it would go away. 1 month later, I arrived in the ER screaming like I never screamed in my life. With the same pain in the same area only this time, boring through to my back and radiating up to my right shoulder blade.
I vomitted dark yellow bile and was sent home after Dilaudid was administered a couple of times. ER tests were inconclusive and I was told to follow up with my GI.
I was admitted for an 8 day hospital stay, 2 of those days starved in preparation for an ERCP which was cancelled again due to risk of pancreatitis again now that I was 39 and again all tests were inconclusive. A couple weeks later an MRCP showed an inflamation of the pancreatic head, but all other tests showed normalcy. I was tranfered to a liver specialist at another hospital. Who after hearing just 2 sentances of my story said, “I’m not a pancreas specialist, but I’ll find you the best one I can”. I was transfered to a 3rd hospital and finally told I had a congenital difference that 7% of society had called Pancreas Divisum (Where the dorsal and ventral ducts do not fuse) but I would be maintained on RX Pancreatic Enzymes and have check ups with MRI’s every year. BY NOW I HAD LOST 30 LBS. AND WAS UNDERWEIGHT. I figured out that eating no fat was the only way to survive at this point and very slowly started adding fat into my diet. By now its March 2006. I decided that since I was the one who realized it was my pancreas and what diet I should eat, I started medical school. By July 2008, I had another very serious attack and with my recent 2 years of training, I understood that my problem could only be a problem with the sphincter of oddi or its partner the ampulla vader. I met a 3rd GI professor and told him my story inbetween crys of pain and he suggested Sphincter of Oddi Dysfunction. I was now 42 and let him know he confirmed my suspicions. We scheduled ERCP and a sphincterotomy of the major papilla and I had immediate relief and ate normally for 4 ms, before the positive effect wore off. My GI did not have a full understanding of my particular problem, so I went to a hospital which specialized in these abnormal pancreas presentations in the midwest. They had a phone consultation with me, then I did an in person consult with a physician GI pancreas specialist and then the next day, they performed a sphncterotomy of my minor papilla with a stent placement to be taken out in 10 days. This was February 2009. I suffered a pancreatitis attack with elevated Lipase the following day as I was driving home, with severe pain above my xiphoid process and thought I was having a heart attack. Went to an ER and confirmed the post ERCP pancreatitis attack. Had the stent removed and was back on enzymes to eat, but now could eat more normally then just pretzles.
Had a nuerological disease resembling MS begin the next month and used Nuerontin to diminish the parathesias and walking difficulty all summer and basically could eat anything I wanted with out enxzymes, But gained 10 lbs and stopped the Nuerontin in August 2009.
October 14th,2009 had another attack with a hospitalization lasting 3 days. All tests came out normal, and my GI decided a celiac ganglion nerve block would be the only solution for me to no longer feel this pain for a short while.
I had to wait 2 weeks to meet with the pain management team and another 2 weeks for my injection, which was planned to be steroids and lidocaine and would only give me a couple of weeks relief.
The next day I remembered a bottle of RX Ursodial which helped me when I had my very 1st spincterotomy and I took it with a small dinner. That was 1 week ago. I’m able to tolerate small meals 3X/day with very low fat content. I burp a lot, but no acid reflux. I slowly have been getting my life back and yes I graduated medical school as an Acupuncturist. I still take pancreatic enzymes as well with each meal , but thankfully I cancelled the celiac ganglion nerve block.
Hi!
You’ve been down this horrible path, too. I just posted a reply to Margie that you can read if you’d like. I also have pancreas divisum. I’m SOD II, but got no relief from the ERCP with a temporary stent placement. This was done in July. I’m glad to hear that you cancelled your nerve block. Dr. Freeman at the U of M, who is my doctor, told me under no circumstances to ever have one as they only make it worse.
You noted that you graduated medical school as an Acupuncturist. Have you had this done yourself? My pain mangement doctors as advised me to have acupuncture. I’m looking for one who will accept my insurance. Have you had success? I am also working on hypnosis with the social worker at the clinic I go to. I have found that it does help me to relax. I will be seeing her again next week.
I hope you’re having a pain tolerant day!
Kris
Thank you Kris,
Yes your wish came true I did have a pain tolerant day ! I sucked on little pieces of candied ginger and it quelled nausea and discomfort. I attended a party and went to the matre de` and explained that I could have no Grasso (Fat) and he took 5 minutes with me and we developed a little special menu for me. I thanked him profusely and really enjoyed the food. I could have a plain veggie salad, pasta w/marinara sauce and steamed mussles in white wine ! I even had 2 garlic knots ! Sorry I got carried away. In answer to your question, I have acupunctured myself and taught my significant other how to place needles in special pancreas spots in my back. He rose to the occasion! Yes I was pain free for a couple of hours and able to think clearly enough to remember my Ursodial RX Bile salts and I was immediately on the road to recovery. If you are ever in Queens, NY I will welcome you and treat you !
That sounds like a fabulous meal! I read your post to Melea. What a beautiful message. I live in MN, but have a good friend who lives in MD and his mother lives in Queens. We’ve visited her before. I think I should contact him and make arrangements to visit you sometime. I would love that. i’m glad your significant other is able to help you. You’ve encouraged me to get off the dime and make my appointments with an acupuncturist here. Thank you so much for that. Let’s stay in touch!
All the est,
Kris
I have just read the posts about the Hep B vaccination. I had one 15 years ago because I was teaching in the public school system. I was sick with each one and kept asking if I could be reacting to it. I was assured I was not, so like a fool I kept it up. I totally collapsed after the third one. I threw up for 6 months, could not hardly keep water down, became extremetly senstive to all meds, chemicals, etc. After 9 months they finally took my gall bladder after I started itching all over and throwing up green. It did have a couple of tiny stones. When I did not get any better, I had to go to Denver for extensive testing and was told I had Chronic Fatigue Syndrome. Three years after that I was told I had Fibromyalgia when the pain started. I have been ill ever since. I spent almost 3.5 years in bed and too weak to do much else other than shower, dress, and do a little cooking. After using numerous alternative therapies, I finally could go back to work part-time tutoring. Things calmed down and were not so bad until my major attack 3 years ago when they clipped the sphincter muscle. The common duct had spasmed so hard it sucked my intestines into it and was completly blocked. One year later I had another major attack and it has been small ones ever since. I have been having at least one bad attack since June of this year and can’t get things to calm down. One of the doctors I saw in Denver blamed the whole mess on the shots, but it was too late by then. I was fine until I had the shots. I am turning 59 in two weeks and this mess started when I was 44. My life was never the same after those shots and I still kick myself for not listening to my own body. I sure do now.
I have never had a Hep B vaccination but I have had so many bad, reverse reactions etc. to various medications, vaccines that I vowed several years ago to never ever have
a flu shot, vaccine, whatever – and I have been just fine – thank you very much !
I really do sympathize with you and others when I read stories such as yours above.
I don’t care what the health SO-CALLED “professionals” say when they state it is
impossible to get the flu, etc. from their vaccine. I AM NOT GOING TO HAVE THEIR
SHOTS to satisfy them – and so far so good ! ! ! ! (Knock on Wood) Ha
Sending My Very Best Wishes & Prayers to All Of You !
Cristie/Gracie
55 yo, Papillary Stenosis diagnosed 2/09
Dear Donna,
If you are sick because of the shots its not too late to help someone else. Those shots are the same which are being forced on 1 ms old babies. So, whatever can be done will be done, but of course we can stick together to get answers. I’ve decided to create a survey for all men, women & children who have this and will get started on it tomorrow. Then I will ask your treating physicians to distribute it to their patients. They can send them back to me. I’ll compile the research and report back to all. Maybe we could even get a grant to help with expenditures. Its all possible and it all has to start somewhere. Clinical Trials have their place, so does statistical research. It seems that we are lacking this intrical part. How many people have this in our country alone? For starters I’d like to have a conversation of your doctor in Denver !
Nymphaea
After reading yours and others post about having a Hepatitis B shot, I called the health department where I got my shots. I really had no idea how long it had been. I gave the lady my name and she called me back with the dates, Oct.7, 2005 for 1st shot, Nov 18, 2005, 2nd shot and April 25, 2006 for the 3rd shot. I then came home and got some infor on Drs. visit and so on. My problems started in April 2006 and I was scoped by my GI Dr. June 26, 2006 and then on with test and procedures. I really wish I knew if those shots had anything to do with this nightmare I’ve been living for three years.
I post from time to time on this site. I was diagnosed with SOD Type II about a year and a half ago after having my gallbladder removed. I was referred through Kaiser in Northern California to go to California Pacific Medical Center in San Francisco. Dr. Binmeuller (sp?) is an excellent doctor. He does ERCPs all day long. I have had 3 ERCPs. On the first attempt, he placed a stent. I went back two weeks later and he did a sphincterotomy. Woke out of the procedure saying,”pain” I don’t know what was in the injections but he kept checking on me and asking the nurse to give me more shots. The nurse was concerned about how many shots she was giving me. Fortunately, it got me out of pain about an hour later. I was pain free for 8 months or so when it started to come back and another ERCP was scheduled and successfully relieved the pain once again.
I am starting to get that tightness again like a balloon and I am bracing myself, yet hoping that it doesn’t return. I’ve tried a lot of meds that don’t work. I will look into the nitro spray that was mentioned on this site.
I also have a large hiatial hernia and I’ve been getting this pain that feels like my stomach is flip flopping. I am grateful that it ceases within a few seconds but it stops me in my tracks. I suspect it is from the HH sliding back and forth. Does anyone else get this?
Thanks for your help. I hope you stay pain free.
Aileen
Acarew,
I too get the flip flopping feeling. Mine is above my stomach, between my ribs. I contribute it to the sphincter spasming. I have had multiple ERCP and sphincterotomies done. The flip flopping feeling changes with each procedure.
I have a moderate sized Hiatal hernia, along w/ SOD, the hiatal hernia is a genetic trait that both my grandmas share, but no I have never had this sliding feeling you speak of. An integrative health practitioner once told me to drink 1 quart of warm water w/ lemon down in subsequant gulps and go up on my toes and down to my heels and do this “drop” 3 times. Well it works tremendously well to get the stomach to slide right out of the diaphragm !
Hi Aileen!
It’s great to hear that you’ve had such success from your ERCP’s and the stent. I had my first one in July, with a stent. I’m also Tye II. Unfortunately, it didn’t work. Dr. Freeman, my doctor in Mpls doesn’t want to do another one so I’m in the pain and nausea management mode with varying degrees of success. I don’t have the HH and haven’t heard of others having it, but that certainly doesn’t mean they don’t.
I’m sorry to hear that you’re getting that lovely ballooning tightness. I hope that it goes away soon and you continue to stay pain free.
Thanks for posting. Please let us know how you continue to do.
Kris
I can’t believe what I just read about Hep B shots. I too work at a school and work with special needs children. Three years ago I had the Hep B shots and not too long after is when I started with the pain. It has aways been in the back of my mind but I never said anything. I would love to really check this out. I have been in pain for over three years and go to pain management. I’m on Levsin, Protonix, Nortripyline, Tramadol and have been on a little of everything, but these seems to work the best. I still have pain everyday, but better than I used to be. This site really helps me, knowing I ‘m not a lone.
I represented myself Pro Se in a vaccine case for 3 years and had to drop it because I was the only one in this country and w/o no precident, there was no case and no attorney to go forward with. But I will support the case of anyone else this is has happened to in person in Washington if need be. This is what I told the Doc who was the “expert witness” in Phili. I know this happened to me & I know I am not the only one.
Robin, What a small world ! I had my first Hep B shot while working as a supervisor & medical liasson for 2 group homes for the developmentally disabled and followed up with the remainder 2 shots while working with multi-handicapped 3-5 year olds just weeks before a previously planned trip to India. I hesitated to get the remainder 2 shots because something in my gut was telling me not to, but when I was told by a nurse that Hep B was rampant in India and that I could easily bring it home to my family, I completed my shots. Thank you for your honesty, now I’m not alone either.
I was just told at Mayo that the doc believes I have SOD. It took 6 months to get to Mayo because no one believed I was in such pain. I went to 4 differnt GI doctors before I got to Mayo. At first my blood tests were normal. Over 6 month period I had US, CT Scan, HIDA Scan (delayed drainage), MRCP which were all normal. Doctors laughed at me literally when I kept saying how much pain I have been in,a nd then my lipase started getting a little elevated. GI doc said ’so what?’ And told me to come back in 6 months. That’s when I was able to get to Mayo. In late Sept, they repeated blood which showed slightly elevated amylase and lipase. Then they did secretin MRCP which showed delayed drainage of pancreas. Repeated blood again and the amylase and lipase were still elevated, and so they did a secretin EUS. That was normal. The doc who did the secretin EUS said he watched it drain himself and it was normal. He also said I had undiagnosed abominal pain and to follow up with the other doc at Mayo who I had originally seen (a pancreatic/biliary specialist). They scheduled me 6 weeks after the EUS so I thought it must not be serious, otherwise why would they make me wait so long for a follow up. So, I went in after 6 weeks following the EUS and the doctor said he thinks I have SOD due to the drainage issue on HIDA scan, S-MRCP and the blood work. He gave me pancreatic enzymes, and I have recently started taking calcium channel blocker for chest pain and was told this could help SOD. The doctor said they do not recommend ERCP due to risks and that I shoudl hold out until they perfect the botox. Well I understand that they think ERCP could make my condition worse, so I’m not pushing for that, but how can someone at Mayo tell me I have SOD and then say come back in 6 months without giving me any direction or help? I can’t work. My pain is constant, though it is less during the day and when I’m moving around. I’m not throwing up and have mild nausea occasionally. Oh, and they told me I can’t have pain medicine because it makes the spasm worse. Well what is someone like me supposed to do. I’m in terrible pain but can’ t take pain meds. This is debilitating and there seems to be no hope.
Hi Margie -
Wow ! These docs are pretty hard to take aren’t they ? telling you to just come back in 6 mos, no pain meds ordered, nothing ;( How Ridiculous ! ! ! ! ! ! ! !!
I am one of the more fortunate one’s in that it was pretty easy to diagnose me with
AP since I developed it immediately following ercp, as in “hospitalized in the ICU
and ALMOST DIED.” I had an Idiot perform the procedure and am very fortunate
to have escaped with my life. Unfortunately he was such an Dinkledorf that he
didn’t diagnose me correctly which would have been “Papillary Stenosis” and
so I spent the next 4 years simply taking Nexium for GERD and just “dealing” with
the nagging pain until October 2006 when I was assaulted w/another case of
AP. It was then that my AP became chronic, or so I thought until I became fortunate enough to find Dr. Marty Freeman (MN) who correctly diagnosed me with Papillary Stenosis (Biliary I/SOD I) who did a sphincterotomy and stented my pancreatic duct X 2 wks.
Now prior to seeing Dr. Freeman I saw Dr. David Sutherland (the doctor who developed the tp/iat in the 70’s) and who recommended the tp and it was at that time I started taking the pancreatic enzymes. THOSE (the enzymes) were my “miracle” and so I recovered enough that Dr. Sutherland’s administrative assistant, Ann Marie Papas suggested that I see Dr. Freeman and to whom I finally entrusted to do my ERCP last February 2009 which has helped CONSIDERABLY! I only wish that I could have run into him way back in 2002 – that, however is history and
I am feeling SOOOO much better
It sounds like your diagnosis is SOD II and I think it would be a very good idea to see Dr. Freeman or another good GI guy who can help you, certainly prescribe
some pain medication that would help alleviate your pain. Opiates are known to
cause SO spasm but there are others such as Tramadol (which I take on a prn
basis) and there are other pain meds that can help also.
There is hope, believe me and if hindsight could be 20/20 I would have allowed Dr. Freeman to do my ERCP immediately after his recommendation AND I WAS
(and still am) AT VERY HIGH RISK OF POST-ERCP ACUTE PANCREATITIS.
I wish you well and if you have any questions at all please do not hesitate to ask.
Warm regards,
Cristie/Gracie
Thanks so much for your information. I have been in tears every day because no one seems to understand how hard this is. I look ok on the outside, so people think I’m fine. I can’t sleep on my back anymore because it hurts too much and I wake up in the morning with the worst pain of the day. I can’t do the things I used to, can’t eat the things I used t etc. everyone here knows the drill. I’m sure I’m lucky in that it isn’t worse than it is. I read some stories on here and just feel so bad for everyone.
I just don’t understand how doctors can be so stone cold when it comes to this. Do you know any more about the botox for the muscle? From what I understand, it is still experimental? What the Mayo doc was saying was since I’m not in the situation where I’m throwing up all the time, the risk of ERCP is greater than the potential benefit. They do it there and I had a long talk witht the doctor who actually does it. His recommendation was the same. I’ll look into Dr. Freeman, but I actually did trust the Mayo doctors. Don’t get me wrong-they were competent. They just didn’t give me any other option other than have the ERCP or suffer.
It sounds like you have been through heck (the kind spelling
) and I appreciate you taking time to respond to my post.
dear Margie -
My heart just aches for you because I really do know the pain that you are experiencing ;( I said that I am much improved and I am, BUT ……….
I also am not able to lay on my back or my right side without feeling the awful pain and pressure. I also do not throw up ( only on a few occasions over the
past 6-7 yrs ). The Mayo doctors may know a lot but the pain that you are
having is biliary/pancreas pain and this pain is likely causing harm to your pancreas, possibly damaging it further and unlike our liver, the pancreas is not known to heal itself.
How long have you been taking the enzymes and which ones are they and their strength? Enzymes are so very important in protecting your pancreas
so that it does not have to work so hard in digesting food. Have you experienced malabsorption (undigested food)? Have you lost weight ? I
have suffered from both, losing +/- 100 lbs over the course of 12-15 mos.
and it was the enzymes that started allowing me to eat again (no more than
10 gm fat/day).
Do you live in Minnesota ? If so, WoW, then please call Dr. Freeman for a
consultation. ERCP does carry a huge risk but then damage to your pancreas
is not the right alternative either. I think that Dr. Freeman is one of probably only a handful of doctors whom I would trust doing the ERCP and believe me, it took LOTS to be confident enough that he could get me through another ERCP and not cause AP. I also know that if he thinks you are at great risk of AP due to ERCP, he will tell you.
Please keep in touch and let me know how you are doing, as well as hopefully
contacting MF for a consult.
Warmest regards,
Cristie/Gracie
I’m in AZ. I can’t imagine losing/gaining the weight and going up and down like that. Must be so hard. I have not lost any weight. Not to be too graphic but have had intermittent floating stool. That seems to have stopped since I began the enzymes just over 1 month ago. Viokase 16.
I’m glad I found this site. It should help me in getting more information and getting help. Thanks!
Hi Margie!
I’m so sorry to hear of the awful journey you’re on to get diagnosed and treated correctly and fairly for this disease. I call it the invisible disease, because, like you, I look fine. I’ve lost a little weight, but not much. I’m nauseous nearly every day and am also in pain every day to varying degrees. It’s hard to pinpoint the trigger foods, but I know for sure that I can’t eat any processed foods, even if they are noted as organic. High fat foods are out, too. Other than that, I can eat something one day and not feel too bad, yet the next time I eat the same thing, I’ll have awful pain. Like Christie, I can’t sleep on my right side or back.
I’m SOD II, diagnosed via ERCP in July. I live in Minnesota and am so fortunate to finally have Dr. Freeman as my doctor. Like you, I went through a couple of GI drs. before getting to Dr. Freeman. I lucked out with the 2nd one in that he used to be Dr. Freeman’s partner at the U of M before leaving to start his own practice. After ordering every tests under the sun with everything coming back normal. (To this day, my enzymes have never been elevated, in fact my amylase is typically super low). Anyway, he suspected SOD and sent me to Dr. Freeman. Also like Christie, I cannot say enough good things about this incredible man. In addition to being one of the most experiienced doctors in performing ERCPs, he is also very compassionate. He told me about a month ago that this disease is primarily a women’s disease, so there is little research that has been done. There is a 5 year study being conducted now called EPISOD at 6 different universities around the country. The U of M is one and the only one that is not accepting new patients for participation. Dr. Freeman told me that he is doing everything he can to educate drs. about this disease because there are so many that don’t believe in its existence and don’t understand it, so they don’t know how to treat it. He told me that I wouldn’t believe how many drs. there are who tell a patient they don’t need another test or procedure due to their own arrogance in not knowing how to address a condition. If you have the means to do so, I would strongly suggest getting on the next plane and coming to the U of M to see him. He will help you.If he feels ERCP won’t help you, he won’t do it. He said he won’t do another one on me to address my pancreatic ducts because he feels it would be more harmful than beneficial. I have a condition called pancreas divisum, which means by congenital birth defect I have 2 pancreatic ducts vs. one. I’m not sure, but this may be why he doesn’t want to go back in. Consequently, I’m now under the care of a doctor in the Palliative Care Center at the U of M. This doctor is also incredible. I feel so fortunate to have both of them. I am also one of the fortunate ones who can take opiate medications. I take Oxycodone, Lyrica and also have an NSAID patch called Flector that I wear under my right ribcage every day. The regimen of meds helps, but I still get a bad flare-up every couple of months. It seems to take longer to come out of them each time they happen. I’m going to ask about the nitro spray that I’ve read about other having success with at my next appt. at the Palliative Care Center.
I’m so sorry that you had to meet us this way. Believe me, you’re not alone and unfortunately, your journey is very similar to most of us. You will find alot of support from people on here. It has made a huge difference in my life.
If there is anything that I can help you with, please let me know. If you would consider coming to MN, I can provide you with contact information to get your appointment in a private email. Just give me your address.
Oh, I wanted to tell you that I was on vacation in Phoenix last year and ended up with an attack. I landed in the ER at the Scottsdale Medical Center. The GI dr. that I saw there was great. If you’d like, I can dig up his name and give it to you. At the time, my diagnosis was abdominal adhesions and my dr believed that I go through partial, intermittent bowel obstructions, which can be true. It was the dr. at the Scottsdale Medical Center who first suggested that this was not adhesions, but gallbladder related, even though all of those tests were normal. What I liked about him was his comment that tests are subject to the person performing them and the person reading them. To me, that mean s he’s open minded. He was also very compassionate.
All the best!
Kris
Margie,
No need to fear the graphics. It’s the lack of details in such conversations growing up with our families, friends and doc’s which caused ignorance . Floating stools, which are yellow, gold or white and oil slick in your toilet water is called Steatorrhea, simply means you are passing fat. This is a wakeup call for malabsorbsion. Vitamins A D E & K can not be absorbed into our bodies if we don’t absorb fat. Also this adds to obesity in some people. The body thinks its starving so it holds everything without burning it off. In others it causes anorexia, Pancreas / Bile duct/ Liver DZ . An acupuncturist will ask you very specific details about stool, menses, sexual questions etc because we look at the body as a whole and we seek to find patterns based on a 5-8K yr old system and treat accordingly.
Tramadol, Demerol, Dilaudid, Morphine, Hydrocodone, vicodin, Oxycontin, Fentynyl are ALL Opiods & Opiates I know, because I am allergic to the whole bunch causing me to have Basilar Artery Migraines w/ stroke symptoms which turned into a seizure w/ Tramadol ! They are also all know to cause Sphincter of Oddi Dysfunction.
We share lots in common then – allergic reactions to opiates and Yes, Tramadol is an opiate and is classified as an opioid like morphine but the chemical structure is significantly different from the structure of Morphine.
Anyway, that being said – it really is awful isn’t it, having such awful reactions to these meds that offer pain relief to so many others ? Actually, I consider myself fortunate because if I had been able to tolerate them, I would most likely be a drug addict by now.
My 1st experience with Morphine was when it was given IV for my post-
ERCP acute pancreatitis – Uuuuugggggh !
For reasons unknown to me I am able to tolerate Tramadol and although it
isn’t a great pain reliever, it does take that severe edge of pain out of the
equation.
Best to you,
Its been awhile since I have posted. But I see that dr sutherlands name has been added. Dr Sutherland has taken interest in my case, he wants me to have an ERCP done which I finally agreed to, that will be done this Tuesday. I am worried about getting post pancreatitis.
dr sutherland wants to do the tp/iat in dec/jan he said “when the ERCP fails” we will book the surgery date. its interesting the hoops we must go through.
I also see dr joel carter in palliative care, he is great and would suggest him to anyone. I will warn that is schedule is pretty full but if you have a dr call (sutherland did it for me on his own) and asked to see me asap. Dr carter put me on the flector patch and fentanyl patch. They don’t work 100 percent but they do help. I am on TPN and can’t take anything orally that’s why I’m on patches and iv meds. But I would look at dr carter if you need help with pain, he knows what he’s talking about.
Hi Melea -
I am sorry to hear that you are continuing to have pain but at least you are consulting with the very pioneer of the tp/iat (Dr. Sutherland). Who is going
to do your ERCP? Dr. Freeman did my ERCP and although I am at very high
risk of post-ercp AP, I got through it, as well as sphincterotomy of the cbd and
stent placement in the pancreatic duct. He even told my husband and myself
just prior to the procedure that he would “quit being a doctor” if I developed
AP, and that’s how confident he was that I would be okay. (Some would
likely call him Arrogant to say such a thing) Ha. But hey, I got through it
with sailing colors and although I still have some pain I am so very much
better and I would not hesitate to have another (as long as Dr. Freeman does
the ercp
Best wishes & prayers next Tuesday
Cristie/Gracie
Dr freeman is the one doing the ERCP. I find it surprising he said that to you. All the times I’ve seen him he has never stated anything like that to me. How long were you in the hospital afterward?
are you taking any meds?
Thanks for the support. I hate being 20 and not being able to good to school, work and just go out with friends.
Hi Melea!
I also see Dr. Carter. You are right. He is wonderful! Dr. Freeman called for me so I could get in to see him. He’s busy! I have the Flector patch, too. You’re right on that, too. It helps some.
I saw in your other post that Dr. Freeman is doing your ERCP. You’ll be in good hands. I hope that this helps and that there is a possibility to avoid the TP/IAT.
You’ll be in my thoughts and prayers on Tuesday.
All the best,
Kris
Kris: Sorry to barge into this thread bu there was no reply button where you answered my comments above. First, thank you for telling me your story. I have felt so alone in all of this because either friends and family don’t believe how much pain Iam in or they just don’t understand. I had one doctor roll her eyes and say “oh, it’s just so terrible isn’t it?”
So because it is primarily a women’s issue there is little research? I’d get mad but I can’t waste the energy. I just cannot believe how badly doctors have treated people on this board. You know, I’m sure some people just give up and live with this. After being mocked and told it is all in your head, it can really get to you. I’m happy I found this page and resources to get help.
If you want to forward the name of the doc you saw in Phoenix, please do so.
I cannot believe a doc would tell melea “when the ercp fails….” but then again after dealing with these doctors, I wouldn’t be surprised to hear them say anything. My prayers are with ou melea.
Hi! I went through my stuff and of course that’s what i can’t find. It was a Spanish name and i think it started with a G. Really helpful, huh? I’ll keep looking. It is hard to sometimes reply to posts and then to find the replies, too. I always look under “Recently Posted” to find the new ones.
Yes, I would have to say that everyone of us have been badly treated by doctors on this site. Unless you live it, it is hard to understand. This site has helped me, too. There is another one called “Sphincter of Oddi_Pancreatitis on Yahoo groups. Some of the people from here also participate in that group. There are alot of really helpful people there who share alot of info. It is run by a nurse who also has this.
I hope your day has gone well. I’ll keep looking for the info about the doctor.
Take care!
Kris
I will be leaving for Charleston, S.C. in the morning. I have an appt. at MUSC with Dr. Peter Cotton on Monday. They have already scheduled an ERCP for Tuesday should he decide he needs to do one. I asked when they called with the appointments how do you know I will need an ERCP? and his nurse told me it is easier to cancel it than to work me in for one. Charleston is 3 hours from my home, so it isn’t too bad of a drive.
It is my understanding that Dr. Cotton is who brought the ERCP to the USA. He is also the doctor who is heading up the EPISOD clinical trial. So I feel like I will be in good hands.
I am basically posting to ask for everyone’s prayers that I will be rid of this pain and not suffer from post ERCP pancreatitis. From the posts the last few days, it seems there are several of us possibly having ERCP’s next week. Me, Brett and I don’t remember the other person’s name. Please keep us in your prayers and when I am able to get back home I will let everyone know how it went.
You have my prayers!! Please let us know what happens. I guess I’ve almost given up seeing a Dr. The last one was at Johns Hopkins, feel like he patted me on my head and sent me home. I still have pain everyday of life, but I think I deal with it better because I’ve had it so long. At first I thought I was dieing, but now I know it’s a everyday thing. Good luck, I hope this Dr. is a God sent, we sure could use some hope. Stay in touch, Robin
I’m so sorry that you haven’t found a dr. who will help you. Are you able to travel anywhere else in the country to see a dr.? This disease just sucks. My heart goes out to you and the others who haven’t been able to get the proper care. It’s so wrong!!!! I know that I thought I was dying for 2 years until I got my diagnosis. It’s a relief to have one, but I’m still struggling to get my head around the fact that it is an everyday thing and will be my life going forward. I’m really grateful for the 51 years that I had without this condition. I feel really bad for those that are young, living with children and trying to cope. Poor Melea is only 20 years old and is even on TPM, potentially facing a TP/IAT. This site offers so much support. I’m also grateful to still be working, although there are many days when I get home and just say “whew” I made it through another one.
Hi! Melea is also having hers done on Tuesday. All of you will be in my thoughts and prayers! I’ve read lots of positive comments about Dr. Cotton, so you’ll be in good hands. I’ll look forward to hearing how everything went when you’re able to post again.
All the best!
Kris
Melea,
You are going ahead on a healing journey. We along with your family & friends are sending you messages of Light and Hope. Deep within this horrible disease is a gift waiting to be opened. You may not be out “partying” with your friends and ahead of them you will learn how shallow drinking, smoking & drugs are. You may not be eating the typical “American” diet, but by the age of 30 people will be telling you that you still look like a teenager, because your diet will consist of whole foods, seafood, grains, fruits and veggies and you will be able to someday have chicken and turkey and your Mantra will become one word MODERATION. You may take up Yoga, Tai Chi, Qi Gong or even Bellydancing and begin to learn about your body’s resilence and your own healing energy that resides deep within you and will never leave. You will reach out to alternative health care providers like herbalists, chiropractors and acupuncturists and you will discover that you alone have the ability to heal yourself and the practitioners that you feel drawn to are the catalysts to your healing process. When we draw the card of illness, it is two fold. Society points fingers of blame, or turns it into the gossip of the moment, or questions why you are not like the rest of THEM. But in your beautiful wisdom, you will stand tall and know that all things happen for a reason. Anger, Fear & Sorrow were never a part of our creation and they are therefore not a part of us. We can feel them coming, appreciate them, listen to the lessons they teach and let them go.
So, go forward Melea on your healing journey and share it with all you know, because you will be able to share your strength with others.
Thanks Kris, but I’m still trying to navigate the site. I read your letter on my e-mail, but I don’t know how to find it on the site. OK, there are a couple common abbreviations I’m not familiar with and was hoping you could straighten me out. TP ?
TPM & TP/IAT. Thank you for validating my heart. I wrote to Melea the things I would have said to my own daughter who is the same age.
Hi! It is hard to navigate on this site. My email address is krisl1204@yahoo.com if you’d like to communicate directly with me. TP/IAT is a total removal of the pancreas with islet cell replacement in the liver. It’s a very, very tough surgery. I think the TPM that is referenced is TPN, which my understanding is that nothing can be eaten by mouth and that it is a feeding tube. I may be totally incorrect, but that’s how I understand it. Please feel free to email me. I’d love to hear from you.
Kris
← Previous Comments