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.
I had bladder suregery 6 months ago to remove defective bladder mesh and a few weeks after the very difficult surgery I started having pain and constant pressure with the urge to void and I do void about 3 or 4 times an hour,going out anywher is miserable after a short while it hurts where my bladder is.I am feeling like a 90 year old woman,I am post menapausal but only mid 40’s,not on ERT,could any of this be related to that or does it sound like a bladder disorder.Any advice is so appreciated
Well here we go again , thought the pain was getting better but it
is back , feels like a gallbladder attack ,shouldnt have drank that coke i suppose , heck i dont know what to think anymore it has been 2 weeks of pain ,how long can this last.this burning hollow
pain wher my gallbladder was is driving me nuts!
I know how this pain can drive you nuts. I wish there were an answer about how long it can last. This condition seems to have a mind of its own. Where do you live? We can try to help you find a doctor in your area that understands these issues.
I hope you’re having a better day today. Take care!
Hello Everybody !
First of all Melea, please teach me what “Smoldering” pancreatitis is. This is a new one on me. Hope you get taken care of soon so you can get back to a normal life !
I have some news for the other SOD’ers. I did some research and there is a Clinical study of Cymbalta going on now for SOD. Now Cymbalta is being used for Fibromyalgia, Migraine Prevention, and Nueropathies. All of which I have. And the 600mg of Nuerontin (which I got down to from 1200mg) for my SOD + 1/2 a Zoloft(to prevent migraines) was working, but was knocking me out, into such a deep sleep, I could barely open my eyes after 9 hours ! So, I asked my regular doc if I could do a trial. and kill many birds with one stone. He said sure.
My nuero agreed. Although I’m not sure if I can stay on it, because its only day 3 and I’ve had 2 serious migranes (which could be totally unrelated as the drug should take a couple weeks to kick in). What I have to tell you is this morning, I accidently forgot to take my enzymes & Ursodial w/ breakfast and well nothing hurt afterward. Its a start !
I just wanted to check in and see how you’re doing. Hopefully, feeling a little better! I’m having an endoscopic ultrasound tomorrow along with a pancreatic function test. I should know something from the EUS tomorrow, such as whether or not there are any pancreatic changes from the one I had a year ago. Let us know how you are!
Hello Shelly,
No problem with the Cymbalta, not even a side effect ! And although my body just got over 2 more simultaneous infections and I got very wiped out from the antibiotics, I’m stronger feeling good now and had a great weekend w/ my daughter celebrating her 21st birthday and the holidays early, as she has a lot of people on her list to visit in this 2 week period.
Last night, we had a Blizzard here in NYC. I was like a normal person and we walked around the corner to our local bar/ restaurant and had an Amstel light, giant glass of water, some Jalapeno poppers and chicken fajitas w/ fried onions & peppers. OMG did I just break the cardinal rule and use the “F” word ? On this site ? How dare I ??? Guys, I did take enzymes w/ dinner just to be on the safe side, but I haven’t needed them all week ! What can I say ? Cymbalta also prevented all but 1″Time of the month” migraine & my usual blizzard joint pain as well !
Me, the one who is allergic to like everything has no problem w/ this stuff and is feeling good ! I can only hope the same for all of you, as the holidays approach, so does hope. I wish it all for you.
Melea, now that you know your enemy, the fight is on. You will win !
I’m glad all of your biopsies, and procedures seem done b4 the holidays and I wish all of you sucess in your various fights. Been very busy treating car accident trauma patients all week and this will be the bulk of my work into the new year. Thank you all for your support and lessons. So much to learn !
Nymphaea
Your old fashioned blizzard sounds like a blast! I would love to experience that in NYC. in Minneapolis, we have them, but it’s not like being a city resident and being able to walk around the corner to go out for dinner. We just hunker down at home and ride it out! I’m so happy to that you’re feeling better. I had my EUS and the PFT on Thursday of last week. The EUS didn’t show signs of chronic pancreatitis. The dr. who perfomred it said my issues are probably SOD. You know. That 3 letter 4 letter word! I hope you have a wonderful holiday week and continue to feel well. I’ll look forward to hearing from you again!
I probably won’t be writing for a while. We lost my sis in law yesterday and my brother and the 5 children are severely traumatized by her violent sudden passing. Preliminary autopsy shows a missed heart defect. She was 40. The shock was a terrible blow to us all, but especially the children. Bless you all during the holidays.
Well dr freeman threw a stent in the pancreatic duct and I am not feeling better. Actually the upper left quad of the ab hurts more than when I came in last Monday. I have not seen the dr about the pain pump yet. They want me to have a neuro consult before which I guess makes sense but makes me feel a little like they think I’m crazy (I think they have caused all of us to feel that way at least one point). The neuro person that dr carter wants me to see was gone last week and I haven’t heard anything else. I have also been told they are going to do xrays on ab just cause my tummy got really distented overnight.
Hi Melea! I’m guessing you’re still in the hospital? I’m sorry that the stent has made things even worse. I don’t think they think you’re crazy at all! I’m willing to bet having patients see a neuro before they implant the pain pump is part of the standard procedure they follow before doing it. Implanting something in your body is a big deal and I’m sure they want to make sure that you’re really ok with it. I hope you have a better day today. Please let us know how everything is going.
So i am still in the hospital, lipase still up. But they have decided to run lots of labs and such. They have started checking for a rare thing called amyloidosis so far my urine has come back positive. Dr freeman saw the labs and all he could say for about an hr was “holy shit!” Turns out this is super rare and he has bummed his schedule for tomorrow, sorry if you are being moved but he is going in for biopsies to confirm. The treatment is chemo, marrow transplant and meds such as steriods and such. This could be an interesting road. . .
Oh, Melea! I am so sorry that you are going through so much. i am glad Dr. Freeman is bumping his schedule for you. Dr. Freeman isn’t doing my procedures. One is Dr. Ammat, I think. I believe he is a Radiologist. The other is a pediatric GI dr. Do you know where you will be having the biopsy? I’ll be in the Endoscopy Center in 3C. I wish I could stop by and see you, but I’m sure you’ll be in no shape for visitors. I am praying for you and hope you get some answers! Take care, honey!
i dont know where in the hospital they will be doing the biopsies but I have my own room (room 512, floor 6d). You are more than welcome to come! And they came in this morning and said I’m on the schedule today but no one seems to have a set time for me. I guess I’m stuck here either way so it doesn’t matter much. ;P
I hope all your procedures go well and without trouble!
Melea, I wish I had remember you were there on Monday, I would have came and seen you. I had my MRI done and than seen Dr. Freeman at 3:20. I am really sorry you are having such a hard time. You are in good hands though. Kris, is there waiting to have her test done, she just text me and wanted me to let you know that she will see how she feels after she is done, and if she isn’t to loopy she will come see you.
I was supposed to have my tests done at 12:30, but didn’t go into until 1:30. They took 2 hours. By the time I got out of recovery, we didn’t leave the hospital until after 6:00. They made me be in a wheelchair when we left and took me straight to the car. I was pretty loopy. I also figured you were in having your biopsy done. The EUS didn’t show signs of chronic pancreatitis. Dr. Attam said the function test usually has the same result as the EUS. I’ll have to wait the 3 weeks or so to find out. Dr. Attam said it’s probably the SOD causing the issues. How are you doing after your biopsy? I’m praying for good answers for you!
Sorry to hear your procedure got pushed so far back. I was done with my biopsies by 230. I have taken a nap here and there, not much else to do in the hospital. There was a bit of a communication error on the drs part that upset me a bit but its over.
How are you feeling now? Are you heading to work tomorrow or going to take the extra day as a weekend?
I couldn’t reply to your post, so I hope you find this. I’m feeling ok. Worn out and in some pain.How long do you have to wait for the biopsy result? Do you know how much longer you’ll be in the hospital? I am planning on going to work tomorrow. I’ll see how it goes. I may leave work early. If you’re still there on Saturday, I’ll try to come by later in the day to visit. Take care and keep us posted!
I am guessing it will take a week. . . I have no clue how much longer I’ll be here. I thought I would of been way gone by now, so that’s a tough question!
Dr freeman and pretty much every dr here is researching this tonight they have heard of this is med school but haven’t seen a case. The intern on my case came in with stacks of paper and said they are letting him leave to research more on this. It would be nice to have name for this instead of all the idiopathic problems.
Melea,
I am praying the best for you..It has got to be a little scary for you when the dr’s say they have never seen a case of this! Sounds like you are in good hands though and hopefully on the right track. I will be thinking of you and praying for you.
Best of luck to you!
Karen
Amyloidosis is where proteins build up in organs. For me it seems like its the gastrointestinal tract, this is rare, it normally builds up more in the heart and kidneys but the disease itself is very rare as well.
Symptoms for me are tingling in limbs, part of my body fall asleep very easy. Diarrhea and constipation which is so odd. One day I can go 10 plus times a day and others I can go two plus weeks without a bowel movement. Nausea, feeling full quickly, severe fatigue, protein in the urine.
So sorry to read about what you are going through. I know it is good to know what you are dealing with, but I bet it doesn’t feel all that great to be the rare exciting case there. Please keep us posted. I’m thinking of you!
Well I’m glad you finally got the problem nailed Melea. If I recall from my university days amyloidosis is hereditary and results from abnormal protein deposition (amyloids) in various tissues – they think it plays a role in Alzhiemers as well if I recall – but not from the same hereditary pathology. The good news is is not malignant, it’s treatable and you have a real chance of being out of pain – I’m delighted for you – all the best.
Seems I’ve had a similar breakthrough. I vaguely recalled somebody here saying they thought a high ejection fraction was as bad as a low one quite some time ago. I kind of dismissed it at the time but in it stayed in the the back of my mind. A week ago I suddenly recalled the Doc saying – oh your gall bladder is working well and the sphincter is not blocked at all – 96% was ejected in and hour – that’s excellent. I thought oh that’s good – at the time but my subconscious must have pick up on it.
So I looked it up further and a 96% ejection is crazy high and indicative of a very hyperkinetic gall bladder, anything over 70 is a problem – the doc was totally wrong – but quite a few doctors don’t seem to know this. (She was a liver transplant surgeon while really makes me wonder)
It’s almost always symptomatic with diarrhea and pain and almost always resolved with GB removal – so the prognosis is very good. The only thing I can’t figure is why the HIDA scan and the CCK didn’t flare it up when simple tings like wheat bran and opiates really do a number.
But I found some studies that show the effect of nitrates on GB size in people with hyperkinetic GB and it totally explains why this relieves the pain. I’m having a consultation with a surgeon next month.
What saddens me is just how difficult this is to diagnose and how many people are suffering unnecessarily. If I hadn’t been in the profession I would have never figured it out – and it took 30 years.
I can’t recall now who mentioned it but thank you so much!
Well, I intended on coming to visit you late this afternoon, but I ended up spending the day at Abbott hospital with my mom. She’s 83 and is having something called arterial fibrillation, which means her heart isn’t beating properly. They did admit her and are running more tests. I’ll be going back there tomorrow. She’s doing OK and it is something that they can correct.
I’m sorry that they’ve found that you have the toughest kind of this disease . We know your in good hands with your doctors! How are you doing? Are you still in the hospital? I’m thinking about you!
Hi Brett!
It’s good to hear from you! Interesting findings. I need to go and pull my reports. My first thought is that I also had a high ejection rate in my HIDA scan. I’ll find the reports and let you know what they show. Please keep us posted after your next appointment and update us on what the surgeon thinks. I know for me personally that high fiver foods such as wheat bran send me into orbit. I don’t have the same problem with opiates. I couldn’t survive without my pain meds every 3-4 hours. It is amazing how differently this affects all of us. I was with my brother today, who I’ve posted about before. He is SOD I and had a severe attack of acute pancreatitis a few years back.. We both had a salad and soup for lunch together. He was fine, but the salad sent me into a huge pain cycle. I just can’t eat raw vegetables and other high fiber foods that he can. We were at the ER with our mom, who was having heart rate problems. I made it through without having to check myself into the same ER.:)
Kris
Hi Karen!
I’ve been thinking about you and am wondering how you’re doing. Hopefully, well! If you’d like, please email me @ krisl1204@yahoo.com. I’d love to hear from you!
Hi Kris,
I am so sorry you are having troubles with your Mom. My dad has also been in and out of the hospital lately. 3 times in the past 2 months due to v-fib which is a dangerous heart rythm. They have had to schock him back into a normal rythm each time. He was in the hospital the same time I was in with my last ERCP! Different hospitals though. It was kind of funny..we were calling each other from our hospital rooms! It is very stressful having to deal with your parents being sick on top of our problems! I have been doing ok. I just took myself off of my oxycontin cold turkey so I am feeling pretty bad now. I am still taking the percocet so I am getting by. I just can’t stand the sweating that the oxycontin causes. It is horrible. So hopefully I can get an emergency visit today with my pain management dr to discuss what to do next. I am hoping I can get off of these pain meds eventually. I know that is a very dangerous way to do it ..cold turkey like that but I am still taking the percocet so I didn’t stop everything cold turkey. I am thinking maybe I can try oxycodone instead..it just isn’t the long acting like the oxycontin is. Are you on the oxycodone Kris? I can’t remember what you were taking? Are you still doing the Flector patch. I am not since it was 100.00 per month after my insurance and I didn’t think it helped that much.
I also just got word that my youngest child (son) will be deployed again on Jan. 2nd to probably Afganistan this time. He went to Kuwait last time so I am trying to deal with that also.
All in all, I have been doing well. I don’t have the intense pain at night that I was having before the stent so hopefully that will continue to improve.
I was able to go see the Nutcracker on Sat and absolutely loved it! That was my first opera and it was pure magic! I was worried about sitting through it but it was fine. I hope things improve with you and your mother.
Please let me know how you’re doing. Can you remind me what meds you are taking? I appreciate all your information as I think we are very similiar in our disease. Thanks for thinking about me!
Love , Karen
Hi Karen! It’s so good to hear from you! My mom is home and is doing better after also being “shocked” back into the normal heart rhythm. That’s crazy that you and your dad were both in different hospitals at the same time. I hope he continues to do better. It is really hard to deal with our own issues and those of our parents at the same time.
I worry about you going off the meds like that. It is hard on our bodies to do that. I went off of my pain meds in late May after my gall bladder surgery. I didn’t do it cold turkey. I worked with the pain clinic to reduce my dosage and ultimately, quit taking them. It was about a week later that I ended up in the hospital for 3 days. It wasn’t because of the symptoms of quitting. They told me I couldn’t go off of pain meds because of the SOD issues and the adhesions that I have. They said they were both so painful that I would just end up back in the hospital if I didn’t take them. I quite fighting it then and have been on oxycodone since September. That’s when I started at the Palliative Care Center that I’m at now. Before then, I was taking 4 Percocet a day, which wasn’t enough. I now take 2 of the oxycodone every 3-4 hours. If I don’t, the pain gets so intense, it reminds me that it is time for another dose. I’m not using the Flector patch any more, either. My insurance won’t pay for it any more. Like you, it really didn’t help all that much. I started it the same time I started on the oxycodone. I guess I was hopeful that the patch was the greatest contributing factor to the pain relief, but it wasn’t. Please, please be careful about how you wean yourself off of these meds. I’ve also learned to accept that my body needs the pain relief just like a diabetic needs insulin, so I’ve stopped judging myself for taking them. I don’t abuse them at all. In fact, I take less than what is prescribed daily. Just please be careful and good to yourself!
I’m sorry about your son’s deployment. That’s a very stressful thing to have to be concerned about. I will be praying that he is safe.
I’m happy to hear that you are a bit better. Again, please be careful and gentle with yourself. I wish you and your family the best of the holidays. Please continue to stay in touch and let us know how you are. Email me anytime!
After my visit on Monday, I requested my report from the doctor, and I wanted to share this with everyone. It said I have intractable pain. Well I looked it up and found this website that relates to all of us in some form. http://WWW.INTRACTABLEPAINDISEASE.COM I was put on pancreatic enzymes and another immune supplement. Dr. Freeman said that out of all of the test that say you have chronic pancreatitis, the only one that isn’t normal for me is the function test that showed the insufficiancy and low bicarbonits.
Sorry to hear your kind of amyloidosis is the most difficult Melea. I only got the basics on it and University and that was quite awhile ago. Seems though if it’s not hereditary ad genetic you might have a better chance of treating it?
I have trouble believing the gall bladder can be a problem but give no pain from a HIDA scan with CCK – which stimulates full contraction. My feeling is it might be an associated problem but not the main cause. Much as I’d love it to be the GB I try to control wishful thinking that runs against the evidence. But all the literature so far says 96% is a real issue so I’ll keep looking in that direction and let you guys know.
On thing I found that may be worthwhile passing on is: I was taking a generic version of gabapentin/neurontin and up to 600mg a day without much help. I had some old samples of Lyrica 75mg I thought I’d try when the neurontin ran out.
The difference is enormous. Just 75 mg of Lyrica made me quite drowsy and relieved the pain way more than gabapentin. There must be a considerable difference in the mechanism of action.
Hi Brett – been meaning to reply to your posts since you started investigating the the too high ejection fraction as a potential issue. Two thoughts from someone with no medical training – (1) could it be that someone with very high ejection fraction just does not have the same adverse reaction to CCK (versus low ejection fraction from sluggish GB)?; and (2) if high ejection fraction indeed is a problem, is there medical evidence to back up taking it out as the treatment? I wonder if an overactive GB would respond to some sort of medical therapy. Also, like you, I wonder if high ejection in the GB points towards another cause besides GB being inflammed – in which case maybe you can keep it. I had thought that the inflammation was the main reason doctors opt to remove GB because the inflammation itself creates the risk of complications. Sounds like maybe yours isn’t inflammed/getting in the way of other processes, so maybe you won’t have to do that. I would love for you to find proof that this would work, get it out and feel great (and totally understand sort of wanting everything to point to that), but would be even better if this could lead you to the root of your problem without having to go through a surgery. I am guessing I am not adding any new thoughts here, but just in case I wanted to weigh in.
I did some more research and it’s making more sense now – well at least this is my theory. Morphine causes all the sphincters to contract (this is unequivocal and well proven) CCK causes them to relax and the GB to contract – (also unequivocal).
So if you have a high ejection fraction it doesn’t take much sphincter contraction to cause pain. You’re pushing a lot of liquid through a small duct and fluid dynamics say that more volume pushed through a small opening causes back up.
So morpine causes severe exacerbation because it contracts the SO. But the CCK alone causes the spinncter to relax and the GB contract – so CCK is no problem in itself.
I’ve tried the meds they recommend to relax the GB – most are smooth muscle relaxants like atropine, hyoscamine etc and antimuscinarics or anticholenergics, none help much but there are some studies that show they increase GB size – indicating relaxation.
The also recommend calcium channel blocker like nifidipine. I recently tried mebeverine (colofax) these didn’t help either. But the sub lingual nitrate is a big help – so it seems I need a pretty strong muscle relaxant to get much effect.
I have one study where they found 99% of those with ejection fractions over 80% had GB inflammation on histopathology.
I’m getting so much benefit now from just 75mg of lyrica I think I can function again. I’m still seeing the specialist about possible GB removal though. I want the capsule endoscopy as well to rule out other small bowel diverticulum – but here it cost $1000 and is not covered under insurance.
Hi Brett -
I’m wondering if you are still thinking your problem is IBS alone? It seems like you have something more going on but of course I don’t have the medical training you have and it’s also your very own body we’re talking about
There is much talk on the ejection fractions and so I assume this is referring to the HIDA scan? I’ve never had this procedure since Dr. Freeman told me it is not necessary for those diagnosed with Papillary Stenosis/Biliary I/SOD I in which I have documented elevated pancreatic & liver enzymes as well as a
dilated cbd.
It is great that you are seeing much improvement from the Lyrica but I also can see why you/they may still want to remove your gallbladder. After all, the statistics show just a 20% or less chance of ending up with post-chole syndrome. Also it appears to occur less in men than it does women.
Statistics to me though are more like a crap shoot because I always seem to
wind up on the unlikely ( or rather unLUCKY ) Ha! side of a bad occurrence such as that found with post-ERCP acute pancreatitis occurring in just 1% of the population in 2002 (when I had my 1st ercp ) and that has gone up to more like a 5-10% occurrence in post-ERCP acute pancreatitis.
I don’t come here very often since I am feeling much better since my ercp w/sphincterotomy last February but I am glad you are still posting here and keeping us informed as to how you are doing, as well as educating us.
I seriously doubt it’s IBS alone in my case – even though it’s the diagnosis of convenience for most docs. I know what the pain of IBS is like and do get the cramps on occasion it’s a sharp pain that can double you over .
But the pain is very minor by comparison to the deep nausea and waves of pain that make you sweat . I can understand why the IBS sufferers think it’s bad. They just don’t have the much worse pain of SO/GB sufferers to compare it to.
Yes the HIDA or DIDA scan is th only way to assess GB ejection fraction. There’s a lot of studies showing it’s of limited value and not predictive at all of the success of GB removal – but it does have it’s applications.
The chance of post choli syndrome is well under 10% for males – closer to 1% and the success rate of GB removal in high ejection fraction studies was closer to 99% – admittedly the test number was small – 30 patients.
Dr Freeman is dead right IMHO. If you have evidence of papillary stenosis (enzymes or dilated ducts) – why do a test that has a very low predictive value that will almost certainly show a low ejection fraction due to the stenosis? In fact they don’t even recommend manometry for you – type 1.
The numbers for post ERCP pancreatitis are actually much higher than the general studies indicate. In noraml populations it quite low. I had prolonged studies of both pancreatic duct – (I have 2) – with manometry – and not a trace of pancreatitus. SOD patients are MUCH higher risk, being female, under 50 etc all increases the risk.
So if your in the high risk category – SOD especially – your risk is closer to 30%. But seem to be lowered with the right technique – duct stenting etc.
I’m so glad you’re doing better and the procedure worked for you. Type 1 patients can expect a high rate of success with sphincetrotomy and you’re in the best hands.
Brett I’m so happy that you are getting relief from the Lyrica. That is great! I was taking 75mg twice daily and it made my hands swell real bad so I quit taking it. Not to mention weight gain which I definately do not need!
I’m not aware of your full story Robin so take this advice under advisement.
It is possible for thoracic spine pain to refer to the anterior chest and abdominal region. Just as it’s possible for GB pain to refer to the back and right shoulder.
Unfortunately the human brain has a very good sensory map of the skin and you can usually tell quite accurately where you are being touched or irritated.
Once you get under the skin the map in the brain homunculus of the parietal lobe get a bit fuzzy and the neural network far less dense. You also get convergence and divergence of sensory fibers, cross over from one set of fibers to others etc so pain from he visceral region can manifest in other places, and other places refer pan to the viscera.
People with disc problems often get pain all down one leg and get misdiagnosed with sciatica when the sciatic nerve is not being compressed or irritated at all.
It make diagnosis remarkably difficult and it’s always a good idea to rule out musculoskeletal pain in abdominal pain syndromes – especially if the pain is in the back.
SOD and biliary pain can manifest itself in your back, directly behind where it’s located in the front. I don’t know why it travels. I’ve had it strongly in that area today myself.Today, I felt like there was a knife going through my gut, but that it was being”pinched” at the same time, particularly into my back. There just seems to be no rhyme or reason as to how this shows up and affects us. I hope you’re doing a little better tonight. Please let us know how you’re doing!
Merry Christmas to you,too! It was not a pain fre day, but a tolerable one. I’ve learned to appreciate those. I hope yours was ok as well! Let us know how the day went.
I saw the negative post that someone put on here and your very appropriate reply. I’d like to take this opportunity to say THANK YOU for this blog. I have learned so much from eveyone sharing information. I’ve devoloped 2 great friendships with individuals that I’ve met on here and we now communicate daily. Without you, we wouldn’t have these friendships and the wonderful support that we are able to provide each other with. I wish you a very happy holiday season along with a healthy and prosperous 2010.
Hi Kris -
Merry Christmas and how are you feeling today ? Sorry I haven’t been keeping up but I’ve been so busy that I get on a website, post a few questions/answers and then
its off I go again – thank GOD my Christmas shopping is over.
Please let me know what’s going on with you, etc. when you can !
Hi Gracie!
It’s good to hear from you!I read on the other site that you haven’t been feeling well. I hope today is better! Merry Christmas to you and your family as well. I’ve had some good days and some tough days. This thing just has a mind of it’s own. I had an endoscopic ultrasound done on the 17th of Dec. along with a pancreatic function test. The EUS showed 2 of 9 signs for CP. The dr. said that was considered normal, as anyone off the streets would have one or two signs. I have to wait a couple more weeks for the results of the function test. The dr. said that the function tests are typically the same as the EUS. However, I know of another member who had both of them done about 6 weeks ago. She had a normal EUS, but the function test showed signs of insufficencies. I’ll wait to hear.
It’s been quite the Christmas snowstorm. I know you’ve been hit in Kansas as well. It is beautiful, though!
Let me know how you’re feeling. All the best for 2010!
Thank you so much, Kris. I really appreciate it. I’ve been keeping this blog for 7 years now. I never imagined this one post would have a life of its own and over 1,400 comments. Wow. You guys are so amazing and even though I don’t post much because my SOD is pretty much under control, I admire you guys so much.
I don’t know if anyone reads my more recent entries, but I’m considering moving my blog away from here and staying on Posterous where it is much easier to post/maintain. And cheaper too (free) vs. the $125/year I pay for this blog. I’m sure you noticed how slow the page is, and how hard it is to navigate. I don’t want to break this thread though, so I’ll be very careful about what I do. I just wanted to give you a heads up, though.
I wish you all nothing but health in the new year. And thanks again!
Dear Judy, I also want to thank you for letting all of us post on your blog….It has been a great help. I haven’t posted in a while but I have tried to keep up with what others were posting. I’m still dealing with my SOD…it is better than it was but not gone…and I recently had shoulder surgery (a week ago). Please let us know if we can contribute to the cost of this blog. Happy holidays to everyone here! -Laura
That’s really sweet, Laura. I appreciate it. Truth is, right now I don’t know for sure what I’m going to do with the blog. But I will definitely find a way to leave this thread intact no matter what, and I’m not making any changes for the foreseeable future.
Hi Judi,
I didn’t see your reply to that person but I bet it was good and I am glad you did it. I also want to thank you again for keeping this thread going. I have learned so much from this site alone and it’s my main (really my only) internet resource as I am going through the diagnosis stage. I’d also be happy to kick in to support this blog or anyplace else you transfer to.
I thought about you at Chanukah as I delicately tried to make myway around the latkes (I remember that you also have issues at YK…) Glad you are feeling well these days and I hope it stays that way! Thanks for providing this great resource.
Michele A.
I’m sorry you had to go through shoulder surgery. I had it done myself 3 years ago. Out of all of the surgeries I’ve had to have done, that one was by far the worst! I hope you’re doing ok.
Hi! First of all, I’m so happy to hear that your SOD is under control. My wish for all of us here is to reach that point in the coming new year. I can certainly understand your desire to move away from this with the associated cost. Like Laura and Michele, I would also be more than happy to contribute. I did see your other reply that you weren’t making any changes in the near future. Whichever direction you decide, I appreciate your willingness to keep this going. Again, please just let us know and we’ll help. As I said earlier, this has been the best information site and support that I have found. Through your site, I’ve made the 2 great friendships that I spoke about. I know they will become life long friendships and I am so grateful for them.
This site is wonderful. You are doing a fantastic service an easing the suffering for people trying to cope with one of the most painful disorders the human boy is capable of. I’ve learned a great deal here and for the most part everybody is wonderful.
I find you get negative posters on every forum. The best practice is to ignore them and they go away. What they need and thrive on is responses.
It would be nice if the computer came with an ignore button.
Hi Judy!
Did you remove the negative post from here? I did not see it but I also wanted to thank you so much for providing this blog for us all to learn more about this disease that is very uncommon and being able to share our stories with each other.
Also it is great to have a place to just come on here and vent … which I have done a time or two! If you need anything from us please let us know and I’m positive everyone on here would be glad to do anything we can to help you. Merry Christmas to you all!
Karen
Hey Brett, so glad you are doing well w/ Lyrica ! I am 19 days into Cymbalta and loving it. NO SOD to speak of. Have been eating anything I want. And LOOK MA. . . No migraines ! Well to be honest, I had 2, one serious 24 hr deal and one minor, 2 hours !
Thats a far cry from 8/month ! My fibromyalgia has been under good control except for the blizzard last week and this week w/ recent Severe Rain Storms & all my family stress.
Just thought you guys would like an update. Cymbalta is presently under Clinical Trial for SOD, but because I already had 3 other problems, it is approved for, I thought it was worth a try and 2 out of 3 of my Dr’s agreed.
I wish you all a New Year where you gain control of this problem in your lives, understand your individual causes and find your own breakthroughs !
Sincerely,
Nymphaea
I’m so happy that Cymbalta is working for you. How much are you taking? I asked my Dr. to ween me off of Nortrip. I’m still taking 40mg as of the last 2 weeks. At one time I was on 75mg. I’ve been on 25 mg for about a year. I want to go off of this because of weight gain. If my pain gets worse I would like to try Cymbalta. I think one time a Dr. told me something about it. I still take Tramadol and an anti spasm med. You really give me hope.
Hi Robin & Brett !
Happy New Year everyone ! I am taking 20mg Cymbalta,(the smallest amt.) Danny and I are in disbelief ! Look Ma . . . No migraines ? (after 20 years) Ordering anything I want at a restaurant ? (after 5 years) Having a snack of wine and chocolates ? Who’s life is this ? Hopefully all of you will be joining me soon ! I must add it was my own research that brought me to this Cymbalta conclusion and my GI was the only doctor against it, for the simple reason there is not enough research yet. I just advise one thing, if you are considering this trial yourself, please research what others have experienced w/ side effects first. I did get a strange side effect when I first started the drug,of early morning anxiety waking me,and lasting up to two hours, however it dissapated a little more every day and was gone in about 7 days. I would do my deep breathing exercises and Danny would hold me and then I noticed all I had to do was squeeze Ht 8 (accu point) on my hand. This I am told I will experience everytime we need to raise the amt. For me, I have been on it for only 3 weeks and only 1/6 of the maximum dosage. Also please remember that my SOD attacks were brought on by chemical contaminates to my body and my attacks were anywhere between 2 & 7 months, 2 necessitating surgical ERCP procedures.
Wishing you all the best of health for the new year !
Nymphaea
Wow what a year it started with a HIDA scan and low ejection fraction in January, to cholecystectomy, to ERCP with biliary ES (mammometry showed increased pressure), to ERCP with pancreatic ES and post ERCP pancreatitis, to endoscopic ultrasound and celiac block, to another ERCP with ES with tight sphincters just 6 months after them being cut and post ERCP pancreatitis again, and now GI MD wants me to get a small intestine feeding tube.
How old are you Julie ? Do they call your syndrome PostCholecystectomy syndrome ? Or are they insinuating that you never should have had a cholecystectomy from the get go and that it was SOD all along ? Or are their thoughts about your case involving malpractice errors ? I don’t know about your case as I have only been on since Oct. So, anything you care to share will educate me further. Thank you and hoping you don’t need that feeding tube !
Nymphaea
I am 35 years old. It is not malpractice, it is just that nothing seems to help. I have pain everyday and some days nausea. I think 70% of people get relief from cholecystectomy when they have a low ejection fraction, so it is clearly indicated. I am just always in the other percent where the procedure does not relieve the pain. I have always been informed that things might not help, but it does not make it any less disappointing.
I’m having trouble posting lately – with detailed post not showing up so forgive me if I miss a response.
Thanks Karen and Nymph.
I’m glad Cymbaltia works so well for you – it’s an SSNRI much like effexor – which really did a number on me.
Regarding ejection fractions there seems to be no correlation at all between pain reproduction with CCK infusion, low fractions and the success of GB removal. So you can have a lot of pain with CCK infusion and no help from GB removal – or no pain at all with CCK and complete relief – same thing with ejection fractions. So many feel the test is useless. Seems it pretty much a crap shoot with taking the GB out and your best bet is to try to rule everything else out first.
Where a HIDA scan may help is to rule out blockages and SO spasm. It seem if the SO is a problem you will have a low ejection fraction – though some feel this doesn’t rule out mild problems and all cases. If there’s a stone in the duct it usually show up as a low fraction as well. Problem is if the fraction is low you don’t know if it’s the gall bladder, a stone, or the SO – so the test is very non specific.
Where there does appear to be a high correlation is with high fractions over 80%. Here’s what I have so far.
A ground-breaking research study was presented at the 56th Annual Meeting of the Society of Nuclear Medicine, presented by Dr. Kelly Holes-Lewis. Medscape Conference coverage can be viewed at: Commenting on this important research, Dr. Harvey Ziessman (Professor of Radiology, Div. of Nuclear Medicine at Johns Hopkins University in Baltimore, MD) calls the high and very-high ejection fractions indicative of ‘Hyperkinetic Gallbladders,’ and says, ‘If this is correct, we have to start paying attention to the upper levels.’ Kelly Holes-Lewis, M.D., the author of the study, is a Resident in the Department of Psychiatry, Medical University of South Carolina in Charleston, SC (former Chief Resident in Department of Nuclear Medicine at the State University of New York, Buffalo NY).
Colleagues retrospectively analyzed 108 patients during a 1-year period who had received cholecystokinin hepatobiliary scans and had gallbladder ejection fractions of 80% or greater. Questionnaires were obtained from primary care providers about patients’ symptoms, whether a cholecystectomy was performed and, if it was performed, whether symptoms improved, were partially resolved, or completely resolved. Complete data were obtained for 63 patients.
A cholecystectomy was performed in cases in which the scan was negative if there was clinically significant pain, said Dr. Holes-Lewis. She noted that the scans had ruled out the presence of any gallstones in the gallbladder.
A total of 28 (44%) of 63 patients with high ejection fractions received a cholecystectomy. Twenty-seven (97%) of 28 patients indicated that they had improvement in their symptoms after the procedure, and 22 (79%) of 28 patients said they had total resolution of their symptoms. One patient did not respond to the procedure. Investigators did not gather data on those patients who did not receive a cholecystectomy.
The data are preliminary at this point, but the findings suggest that surgery may be warranted despite a high ejection fraction, according to Dr. Holes-Lewis.
“We want to pursue this further and see if there is some pathology at the other end of the spectrum of gallbladder disorder that would be amenable to surgical correction,” she said. “A lot more work needs to be done before we recommend surgical removal.”
She speculated that a possible explanation is that patients might have an increased density of cholecystokinin receptors that, in response to a fatty meal, cause the gallbladder to clamp down intensely and result in pain, despite the absence of a low ejection fraction.
“It is very interesting preliminary work,” said Harvey Ziessman, MD, professor of radiology in the Division of Nuclear Medicine at Johns Hopkins University in Baltimore, Maryland.
“If it is true, it will have an important clinical impact in that it’s suggested that patients with hyperkinetic gallbladders get better after cholecystectomy,” he said. “Most of those patients don’t get referred for cholecystectomy because it’s usually the patients with low gallbladder ejection fractions that get referred. We focus on the lower levels of normal. If this is correct, we have to start paying attention to the upper levels.”
Ninety patients aged 21 to 56 years who had chronic non-calculous cholecystitis (CNCC) concurrent with hyperkinetic dyskinesia (HKD) detectable by a stepwise duodenal probing and sonography, by using a choleretic breakfast and by determining the relaxation coefficient (RC) that was equal to the ratio of the volume of the gallbladder (GB) after the use of a spasmolytic to the baseline GB volume. The patients were divided into 3 groups. The authors used as a spasmolytic agent pinaverium bromide (dicetel) in a dose of 50 mg (1 tablet) in Group 1), octylonium bromide (spasmomen) in a dose of 40 mg (1 dragee) in Group 2, and drotaverine (no-spa) in a dose of 40 mg (1 tablet). There was a more significant sonographic increase in the size of GB in Groups 1 and 2 as compared with Group 3. In the acute drug test and during long-term treatment as well, the highest spasmolytic effect was noted in patients receiving dicetel (Group 1) and spasmomen (Group 2) as compared with that in Group 3 patients taking drotaverine. With this, RC was 1.25 +/- 0.2, 1.6 +/- 0.15, and 1.08 +/- 0.1, respectively. No adverse reactions occurred in the patients having selective calcium blockers (SCBs) whereas the patients receiving no-spa were found to have the following side effects: dry mouth (n = 3), transient constipation (n = 1), and numb tongue (n = 1). Thus, the study has provided evidence for the fact that SCBs have some advantage over myotropic spasmolytic agents in the treatment of CNCC with the signs of HKD.
High gallbladder ejection fraction on HIDA (hepatobiliary) scan
It is just becoming evident that a high gallbladder ejection fraction on HIDA (hepatobiliary) scan can be evidence of gallbladder dysfunction and can be associated with significant pain. I am a physician with expertise in Nuclear Medicine. My colleagues and I are in the process of submitting cases to the literature showing that we have removed gallbladders in patients with high gallbladder ejection fractions and found that their pain was relieved and their gallbladders showed chronic inflammation on microscopic examination.
Well just when I thought I was of the hook SOD wise I came across a few studies that prove there is no correlation at all between HIDA scan results and manometrically documented SOD – it’s completely useless to diagnose SOD. So the doctor who couldn’t enter the bile duct for testing – and more or less fudged it with a HIDA scan – then told me I couldn’t have SOD on the basis of the HIDA scan was dead wrong.
It seems possible now I have a problem with very high ejection fraction and possible SOD. So I’m making an appointment with the original doctor I wanted to see in the first place.
I’m getting a bit tired of needing to the the research and teach the specialists their own profession. I can’t imagine how difficult it is for the average person. Here’s the study that proves the mistake. I’ve inserted clarifications to explain the terms.
Conclusion HIDA EF (ejection fraction) is not much better than the clinical impression. The sensitivity and specificity are marginal. The NPV is poor. Based on the review of these 93 patients, HIDA EF is not reliable for identifying SOH (hypertension – SOD really) . We recommend that patients with normal HIDA EF have additional testing or consultation before ruling out CAC. HIDA EF does not predict SOH (SOD).
I am so sorry that your previous doctor ( or at least that’s what he claims to be ) appears to be as lame a duck as my original one was, not to mention countless
others with M.D. or DO attached to their name s :O( Did this doctor initially give
you the IBS ( irritable bowel syndrome ) diagnosis ? Unfortunately I’ve known
others who were given that diagnosis only to find later, sometimes many years
later to have SOD.
Dr. Freeman stated at my first appointment over 2 years ago that the HIDA scan was fairly antiquated even then but I didn’t really understand what he was getting
at since I was at the beginning of my SOD “adventure.”
Anyway and at the very least you will be posting here a bit more often ? and so we
can all get back to learning from all your research again ? How are you feeling
currently and what meds are you taking now ?
Wishing you a most happy & healthy 2010 with warmest regards,
Hi Brett!
Just another example of how we have to continue to be our own advocates. I am just baffled at how little research has truly been done about this and how little is really known. I told Dr. Freeman about the on line support groups when I saw him in Dec. He was aware of them and said that for those of us on them, there are thousands more like us who are misdiagnosed and undiagnosed, primarily due to lack of knowledge and arrogant doctors unwilling to admit they don’t know and to refer patients to doctors who do know. He said he’d be on these support groups, too, if he had to deal with this stuff! He went on to comment again about the little research that has been done, but is now beginning. He said they are learning every day. I never did look at my report to see what my EF was on the HIDA scan, but if I remember correctly, it was above 90%. Let us know when you have your appointment with the original dr. you wanted to see. Again, if I remember correctly, he or she is quite the distance from you, right? I hope you’re feeling ok. It’s good to hear from you!
This blog is fantastic….Seems that I may be suffering from SOD with pain just increasing. ALT is slightly elevated and pain in upper rt quad but no nausea nor vomitting. Researching profusely for answers and Dr.’s in NYC who are versed in SOD. You mention Dr. Freeman…in what state does he practice? Anyone have pain after taking narcotics?
Thanks,
marce
For what it is worth, my doctor told me that HIDA scans can detect SOD, but not 100% reliable, such that you can have a false negative. It is frustrating but absent ERCP (which I don’t think you want to do absent objective findings other than reported symptoms) it seems like the only way to “catch” SOD is repeated HIDA scans and/or bloodwork that would show elevated liver enzymes.
What is CAC?
I am sorry for your disappointment with this doctor. So hard to think that you finally found someone who gets it and knows what to do, only to have your hopes dashed again.
Are your primary symptoms URQ pain and nausea? Have you had other ailments/issues that seemed out of the ordinary but presumably unrelated? I apologize for not remembering your full story – sadly there are a lot of stories here and I tend to have trouble keeping them straight. I may have watched one too many episodes of Mystery Diagnosis but every time I have something new and unexpected I wonder if it all can be related to one underlying cause that ties everything together with GB/SOD issues (though I have yet to get a diagnosis of SOD in the first place).
Hi Karen,
Thanks so much for thinking of me! I am ok – still not feeling better but hoping to get some more answers this week. I did have some improvement this past week but it has sort of leveled off and then there are times I feel like it is getting worse again. Certainly could have done without this excitement. The one good thing (if you can call it that) is that there is some chance that it is related to the issues that started with my GB inflammation and has been giving me the SOD type problems that led me to this site in the first place. At this point the conventional thinking is that it just unfortunate coincidence, but there is some hope that the drs will pursue a possible connection if this latest thing persists.
Thanks again for your good wishes. Are you feeling OK? How are things since your last procedure?
Thanks for asking Michele,
I have been better after the stent placement. I still have good days and bad days. I was really depressed thinking that I was going to be “cured” after this! I should know better after fighting this for 9 years but I still remain hopeful. I don’t have the intense pain..the bad attacks after eating like I did before. That is a step in the right direction! I did have a bad night last night but still not like before. I have to go back on the 8th for my follow up and I think we will discuss whether to take this stent out and leave it out or put in another bigger one for 3 more months. At this point I’m really not sure what we will do.
I hope that you get answers to your problem soon. That’s scary when you don’t really know what is going on.
Best wishes,
Karen
I had a pretty nasty pancreatitis attack last night. I hate this stupid thing, because I’m generally okay until I’m not. And then it takes over my life for weeks and I don’t have time for this crap. We’re in a new area, I don’t have a doctor that “gets” SOD and I’m not sure what I should do. It’s a waste of time to go to the ER and gamble that the doc on call has a clue. I’m dreading telling the whole story again. So much so that I’m seriously considering printing out the 1,500 comments here to bring with me if I see a doctor. Do I start calling gastroenterologists and quiz them until I get one that admits he/she’s treated patients with SOD and related acute pancreatitis? I am not imagining this, I’m not stressed, it’s not reflex. No, I really and honestly don’t drink any alcohol. You know the drill.
My trigger is an abrupt change in my diet. Day to day, the SOD I can deal with. The acute pancreatitis attacks I get totally suck. For every attack I’ve ever had since 1994, I can point to exactly what did it. Fat doesn’t help, of course. But I eat pretty consistently and if I don’t…whammo. This time, it was my decision to join Weight Watchers. I have gained 30 lbs. since 2005 and it’s driving me crazy. My knees are achy so it was time to get it under control. I started following the diet on Wednesday and I was doing soooo well. Healthy, well-balanced diet. Right on points target. Exercise. I have not eaten a single high fat food. Not a one. But more fruits and veggies than I used to and just an overall change in eating habits. Should be good, right? Ha. For me, SOD doesn’t care if the change is positive, just that there’s an abrupt change. My husband said this morning that maybe I should have introduced Weight Watchers one lettuce leaf at a time. Yeah, right.
I was feeling pressure on the upper right side and back for the past couple of nights, but it was manageable. Last night, the pain got much worse and spasmatic. Typically my pain is in the 3 range at most, last night it was spasming to the 8-9 range. By 1 am I was vomitting on the hour. By 3 am my temperature was up to 99.5. Intense pain in my upper stomach and back. I spent the night awake on a recliner between throwing up because it hurts too much to lie down, and I got no sleep until a couple of hours around 6-7 am. Now I’m not puking anymore but the spasms are so sharp I want to scream. I feel like someone is trying to rip my right shoulder off by pulling on my breastbone from the front and back.
Now I know I’m in for a week or so of misery after every bite. Then the cycle will start over again the next time something sets off this horrid issue.
I hate this I hate this I hate this. Thanks for listening. This is the one crowd that I know truly understands how I’m feeling right now.
Hi Judi,
So sorry that you are feeling so bad again with this stuff. Are you still in NJ? I have a name of an excellent gastro in Princeton if you are interested. I don’t know if he knows about SOD, but he really helped my best friend after she was misdiagnosed as having Chrons, so I think he does think outside the conventional box (basically, he respectfully disagreed and did his own testing, despite all of the objective facts pointing to Chrons). I definitely would see him if I lived in NJ. I also have names in NY.
I think quite a few people here posted that high fiber (like “healthy” fruits and veggies) set off very bad attacks.
His name is Gary Forrester and he is at Princeton University Medical Center. I don’t have his number but I imagine that it is easily found with a Google search. If you can’t find it, let me know and I will get it from my friend.
I would say a diet of lettuce but that would set it off too!! I know what you mean. Sometimes it seems like it is impossible to eat anything. I wonder if in the time being there is something you can take that would help break down the fiber and help you digest – like a digestive enzyme or something? I had a suspected case of IBS years ago and those enzymes helped, but I think SOD is a whole different ballgame. I am not sure if the enzymes helped with the fat or the fiber in the food.
Let me know if you contact Forrester and if he is able to help you. I hope so!!!
Hi Judy,
I am so sorry that you are having problems again. It sounds like you really had a bad one last night. I sure do know where you are coming from. We moved a little over a year ago and it is very scary trying to find someone that knows about this disease. I thankfully only moved 3 hours away from my old GI doc but it came to the point where he didn’t know what to do with me anymore so I was able to go to the GI doc that my old GI doc had referred me to to have my second spicterotomy done. He accepted me as a patient and he just did another ERCP on me and put in a stent on Dec. 3rd. It is much better than having to drive 3 hours one way to go to my old GI dr that didn’t have a clue anymore anyway so I lucked out with my move. The only thing is my primary dr is not familiar with SOD at all so that is a struggle. Did you have any pain meds or anti nausea meds to help you thru the night? It sounds like you are very miserable. I thought the same way you did about going to the ER but I just had to go in late Nov before I had my stent put in because I just couldn’t get the pain to go away. I thought it was going to be a useless trip but couldn’t handle it anymore. I went in and I was pleasantly surprised to get a dr and a nurse at the ER that knew about SOD and was very compassionate. He made sure he gave me enough meds to get the pain under control. So I’m just thinking that maybe the same would be true for you also. You might luck out and get a dr that knows and can actually help you break this cycle. I feel bad for you knowing what you are going thru. I hope you find a dr soon. Please keep us posted on how you’re doing.
Karen
Hey Judi, so sorry you are having a terrible flare. Your site has used such tremendous potential to reach out to so many. And I have new friends who help me and I can help them. Thank you.
Now, I was wondering if your weight watchers program involved you simply counting “Points” or did you also consume their premade foods.
I have noticed that alot of the diet company foods are made palatable by corn syrup. Corn syrup is one of the most aggravating substances to the pancreas. It’s one of the reasons we Americans have the highest diabetes populations in the world.
Also, prepared and processed foods are very burdensome to the liver, and the bile ducts are of course just one step away.
Now, if you are “counting Points” probably out of necessity you have been favoring carbs and meats to reach your #’s. Which mean your Ketones are probably high.
So, you see, its not that you made a change, its just that this change wasn’t the right one for you.
Does Diabetes run in your family ?
I know the weight fluctuations can be so frustrating w/ this syndrome. How do you feel about yoga ? There are some special exercises I do which are known to be good for the pancreas. They are called Cobra, 1/2 Cobra, 1/2 bow, full bow. They specifically elongate the bile duct area and can hopefully help you in reduction of spasm. For more info that the Ancient Hindus contributed, research Ayurveda / pancreas. And some dietary suggestions will be made known to you according to your particular Dosha. (Archtype)
Just throwing this out to you and the group, maybe some people will benefit.
Also if your husband can apply constant pressure to your back just below your shoulder blades 1 1/2 inch approx. from your T8 vertabrae, these are the pancreas Acu pressure points and you may get some relief from pain.
Nymphaea
Thanks, Nymphaea. I wasn’t eating any processed foods at all. Thinking back since Wednesday, the closest thing to processed I’ve had is some canned soup, which I have all the time. What I did is really cut back on carbs and had much more fruits and veggies. I think it’s the fiber that did me in, as I believe Karen mentioned. I naturally avoid meat. Maybe some chicken and fish sometimes. My daughter is vegetarian.
Hi Judi! I am so sorry that you’re suffering another attack. You’re right. This crowd you’ve gathered totally understands. Do you have any of your paperwork from your previous dr that you could bring to the ER? I know exactly what you mean about hating to tell the story. It sucks. I see that Michele A. Gave you a doctor’s name that can hopefully help you.in the meantime, I hope you can get to the ER, as difficult as it is. Its so hard to get pain under control when it gets this bad. Unfortunately, going to the ER is the only way to get it under control.
I know for me, high fiber foods such as brown rice, raw vegetables, set me into a terrible pain cycle. I can eat cooked vegetables, not raw. No lettuce leaves!
Please let us knw how you’re doing. Thank you again for this site. I’ve learned so much and have received so much support as well as having made some wonderful friendships that would never have happened if we hadn’t met here.I know its small consolation when you’re feeling so bad, but I wanted you to know how much I appreciate what you’ve done for me and all of us!
I did print comments on the site for my Dr. a few years ago. She put it in my medical file. I have had a bad painful day. I have gain around 40-50 lbs. since on either Elavil or Nortriptaline, so I ask my Dr. about weening me off and just take the Levsin and the Tramadol. OMG, I forgot how sick I uses to be. Even with all my meds I still have pain, but without Nortriptaline I feel so bad. I’m down to 10 mg of it. If I can stay off of it I think I will ask the Dr. about Cymbalta. I just want to close my eyes and never wake up when I feel like this. I go back to work tomorrow after the Christmas break, I work at an Elem school. I’m praying I will get by tomorrow. I would like to go to a specialist that deals with SOD. Of course John’s Hopkins GI doesn’t think I have SOD, they think IBS, yea right. I have pain 24-7, for 4 years some days worst than others. Thanks for listening. This site really helps when I know I’m not alone.
I spent the entire day yesterday in bed and all I ate was a couple of slices of toast. I feel much better today. The spasms are back in the 3 range and I’m not nauseous at all. Of course, now I’m deathly afraid to eat anything.
Unfortunately, I don’t have any of my paperwork. All misplaced in the move so I have to start with a new doc from scratch. I’m kind of thinking that may be a good thing. If I can find the right doc. My first call today is to the one in Princeton.
I’m so glad to hear you’re better today! Hopefully, he can get you in quickly. I’ve actually lost weight over the last few months for the reason you mentioned, being afraid to eat. Cottage cheese has become my staple! Michele from MN will be laughing when she reads this because it’s hers, too and our standard joke!
Good luck getting in with the new doc! I hope to hear that you continue to get better!
I spoke too soon. Shortly after I posted that comment I got a new joy…the worst diarrhea I have ever had. Not to be gross or anything, but it’s like water. So what little nutrients I can get in are literally going right through me. A couple of hours until I can start calling docs.
Judi have you been able to get into a dr or at least get an appointment yet? I really think that you need to have some fluids so you don’t get dehydrated. Please keep us updated..alot of people are thinking about you and wishing you a quick recovery.
Karen
Robin,
I know how it is to want to get off a med that is causing weight gain. I took myself off of the lyrica because of that and it also made my hands swell up alot. I am so sorry that you having a rough time. I keep thinking that one day I will get my meds all straightened out and be able to function somewhat normally. I can’t tell you how bad off I would be without the pain meds. I have finally given up thinking that I will be able to get off of them completely. I know Kris on here has also said the same thing. You really need to go to a specialist that knows how to treat SOD. It is hard but it is imperative that you get the right treatment. I really hope that you have a tolerable day today.
Take care,
Karen
I live on the Eastern Shore of Maryland about 3 hours from Baltimore. I really would like to find a Dr. for SOD, but John’s H Dr. says he doesn’t think I have SOD and University of Md says that he fixed the problem by doing the ERCP and Sphinctotmy. I will travel anywhere to a Dr. to help me. I would once and for all want to know if I still have, for sure SOD. The Dr. said the ERCP and Sphinctomy might not work. Can you please let me know of a Good specialist that I can see, even if he has to do the whole thing over again.
Hi Robin! You sound like you’re willing to travel, so I would highly recommend my Dr. He is Dr.Marty Freeman at the University of Minnesota. He is well known and respected in dealing with these issues. On top of that, he is kind and compassionate. I will be happy to share his contact information if you are interested . Just let me know.
‘I have to agree with Michele on the potatoes. Potatoes and cottage cheese are my staples, along with pasta. I can tolerate butter on both the pasta and potatoes. I agree that you should have tests done to make sure that your pancreas is ok. I had an EUS and pancreatic function test done in late Dec. I’m still waiting for the results. The doctor performing them said that the U of Minnesota is one of very few sites who do those 2 tests along with the MCRP with secretin to try to get the full scope of what’s going on. I had an EUS a year ago, and asked to have another one performed to monitor any changes. Dr. Freeman recommended the function test at the same time. I hope to have the results late this week. The scope of the 3 tests do make sense to me to administer and complete to check for changes and any potential damage, which is why I asked for them. Like you, I have to believe that the attacks cause damage. I want to know and understand what it is.
I’m glad you can get in so soon and hope you can find a means to the short term relief, as well as a long term plan. The sad part about this whole thing that I’m learning is that since so much is still unknown, they really can only treat the symptoms at this point. For all of us and for future generations, I am also hoping that they can one day really pinpoint the cause and ultimately, the cure.
Thanks for sharing how you’re doing. If you can find the time, please continue to let us know of your progress. Just by the sheer nature of your blog, you’ve done so much for so many of us, and I can’t thank you enough for that. Please know that we’re there for you, too!
I believe that you should share w/ your Doctor that a sphincterotomy of the major Papilla is most often not enough for an SOD’er, we often need a Sphincterotomy of our Pancreas’ Minor Papilla as well. This ERCP procedure is more invasive and the fibre optic must move through our delicate Pancreas ducts therefore creating a pancreatitis risk, so thats why a temporary stent is placed. The University of Indiana has done more pancreas work than any where in the world. Indianapolis is just a short flight for you and you would only be there 3 days. Dr. Fogel is a recco I have for you, as he performed my procedure which I just spoke of. Find them online, Read their info and contact info will be there if you wish.
Hang in there Robin, even though I’m doing amazingly well on Cymbalta, after my first month, I already need to increase the dosage. Just so you know, looks like I developed a very quick tolerance to it !
I have to agree with Michele on the potatoes. Potatoes and cottage cheese are my staples, along with pasta. I can tolerate butter on both the pasta and potatoes. I agree that you should have tests done to make sure that your pancreas is ok. I had an EUS and pancreatic function test done in late Dec. I’m still waiting for the results. The doctor performing them said that the U of Minnesota is one of very few sites who do those 2 tests along with the MCRP with secretin to try to get the full scope of what’s going on. I had an EUS a year ago, and asked to have another one performed to monitor any changes. Dr. Freeman recommended the function test at the same time. I hope to have the results late this week. The scope of the 3 tests do make sense to me to administer and complete to check for changes and any potential damage, which is why I asked for them. Like you, I have to believe that the attacks cause damage. I want to know and understand what it is.
I hope your appointment is soon and that you can find a means to the short term relief, as well as a long term plan. The sad part about this whole thing that I’m learning is that since so much is still unknown, they really can only treat the symptoms at this point. For all of us and for future generations, I am also hoping that they can one day really pinpoint the cause and ultimately, the cure.
Thanks for sharing how you’re doing. If you can find the time, please continue to let us know of your progress. Just by the sheer nature of your blog, you’ve done so much for so many of us, and I can’t thank you enough for that. Please know that we’re there for you, too!
Karen, I give up already about coming off Nortriptaline. First two days I had terrible headaches, I never get headaches and I feel like crying, chills, hot flashes and sick to my stomach. Ok after this all past my old bad SOD back breaking pains are in full force. Tonight I’m taking my meds! Just taking the Tramadol and Levsin without Nortrip. makes me very sick. I can’t work like this or live like this. Oh well, I tried, a little.
Robin, I had a similar experience when I stopped taking desipramine (a medication that is very similar and in the same class as nortriptyline). I had taken a low dose for less than a week, but it was making me so drowsy I was having a hard time staying awake to drive. I stopped taking it and had horrible sweats, muscle aches in my thighs and dizziness. It lasted at least several days. I am sorry it did not work out better for you.
I have an appointment with a doctor tomorrow. His bio doesn’t mention SOD but it does say “therapeutic ERCP” so I’m hopeful (not to have an ERCP, but that he’s about more than GERD, IBS and colon cancer). And I’ve contacted the last doctor who did all the tests (ultrasounds, MRCP, bloodwork) for copies of all my records which I should have tomorrow before my appointment.
I’m in a lot of pain after eating, but I’ve been holding down toast well so I’ve been sticking to that and my bowels aren’t the water they were this morning.
I am glad you got an appointment with someone so quickly. Is it someone convenient to you?
My husband makes fun of me because I always offer this idea for people having trouble keeping food down as if it is some sort of miracle cure – but it works! – boiled potatoes with a little bit of salt. You can chop them up to boil and then eat like that or mash them up a bit if you prefer that consistency. Pastina also works for me sometimes. And flat coke or pepsi (regular not diet). OK the nutritional value may not be the best but all bets are off when you feel like this.
Please keep us posted about how you are doing and how the appointment goes tomorrow.
I’ll have to try those potatoes, Michele. Might be a nice break from the toast (so far so good on hot cereal too). Thanks. Since roughage seems to have been the culprit that set off this attack, I’m avoiding anything leafy green. I learned the hard way that I absolutely can’t handle any carbonated beverage, even flat. I’ve been sticking to water and, believe-it-or-not, sugar-free Kool Aid.
The doctor is really close, practically walking distance which is why I decided to start with him. I’ll know 15 minutes into the appointment if he has a clue. Right now I’m just looking for some short-term relief since I know when the attack fades I’ll be okay until the next one. I know it can take up to 2 weeks for the attack to fade. And I should have tests to make sure my pancreas is still okay. These attacks could cause damage and it’s been about 4+ years since the last test.
It’s interesting to hear your reports. I just got horrible diarrhea myself – bright yellow as well . I stopped talking the Doxipin and it seemed this was what was holding off the diarrhea I used to get with every attack.
I’m just getting over another serious 5 day attack and it leaves me totally depressed also.
Given the diarrhea – and you have verified SOD , have you had any explanation?
I just got off the phone to the wonderful doc I was supposed to see in SA – DrToouli. After a long conversation he seems to think diarrhea is indicative of severe IBS rather than GB or SOD problems and wants me to pursue this avenue further before any more testing.
Given your clear case of SOD with elevated enzymes I’m starting to wonder if diarrhea is a sure fire sign of IBS at all?
This is the first time I’ve had such severe diarrhea in an attack. I think it’s more related to the pancreatitis than the SOD.
I really don’t think I have IBS. I’m generally okay except for some RUQ pain that is manageable and then I get short, extremely intense attacks. The worst is about 24 hours or so, and then it takes up to 2 weeks to settle back down.
One doc told me IBS and SOD are very common together – though I haven’t read it elsewhere. It cold mean that a lot of IBS cases are misdiagnosed as SOD as well.
The manometry tests of both pancreatic ducts (I have divisum) was normal and my enzymes are normal as well so I can rule out pancreatitus I think.
Sounds like your pain is severe and typical collic in th RUQ – the short attacks are typical as well – but more so if it is stones. Mine is epigastric (which is still common for the GB) but constant now and mostly a horrible dull nausea.
Hi Brett,
Sorry you had to suffer more in order to bring up a topic we should discuss : Stool Color. I also have Yellow/ gold colored stools when I am having and SOD flare. My GI could never understand this. And my stools would also be very loose, but semiformed. I actually did my appearance on the Doctor Oz Show in order to discuss this, because out of all the possible stool colors, he left that color out in past shows!
I’m curious how many of this group experience this symptom ? Also we have floating oily / pasty stool as we are constantly passing fat. How many of us have that during a flare ?
In Traditional Chinese medicine, colors of the skin, body ,urine and stool have associated meanings. What we say for yellow is “Liver overacting on Spleen” Also in TCM, the spleen and pancreas are seen as the same organ. So, isnt it interesting that 8,000 yrs ago, they could speak about these things and relate all to health ? Afterall the bile ducts connect from the liver & Gall bladder to the pancreas ! And we all have some type of malfunctioning in that area. Even though, I am an acupuncturist, I must say I don’t think I would have made it through med school, w/o weekly acupuncture and massage for my SOD & Migraines, from the interns.
Hope you give it a try !
Nymphaea
I have to agree with Michele on the potatoes. Potatoes and cottage cheese are my staples, along with pasta. I can tolerate butter on both the pasta and potatoes. I agree that you should have tests done to make sure that your pancreas is ok I had an EUS and pancreatic function test done in late Dec. I’m still waiting for the results. The doctor performing them said that the U of Minnesota is one of very few sites who do those 2 tests along with the MCRP with secretin to try to get the full scope of what’s going on. I had an EUS a year ago, and asked to have another one performed to monitor any changes. Dr. Freeman recommended the function test at the same time. I hope to have the results late this week. The scope of the 3 tests do make sense to me to administer and complete to check for changes and any potential damage, which is why I asked for them. Like you, I have to believe that the attacks cause damage. I want to know and understand what it is.
I hope your appointment is soon and that you can find a means to the short term relief, as well as a long term plan. The sad part about this whole thing that I’m learning is that since so much is still unknown, they really can only treat the symptoms at this point. For all of us and for future generations, I am also hoping that they can one day really pinpoint the cause and ultimately, the cure.
Thanks for sharing how you’re doing. If you can find the time, please continue to let us know of your progress. Just by the sheer nature of your blog, you’ve done so much for so many of us, and I can’t thank you enough for that. Please know that we’re there for you, too!
Dear Judi,
Dr. Savreet Sarkaria is notably one of the best GI’s specializing in ERCP in our country. She has only a 1% rate of her patients getting pancreatitis from an ERCP, while the national average is 10%, because she is extremely picky who can have them. She WILL NOT perform them on anyone w/ pancreas divisum, however. Should you like to consider her, she is w/ Weil Cornell at New York Prestbyterian at 69th and York.
Hi all…I’m back from the doctor. I went in with zero expectations, and I liked him a lot. He was pretty familiar with SOD in recognizing the symptoms and such, but doesn’t treat it. Just the fact that he wasn’t treating me like I was nuts was such a welcome relief. He was practically finishing my sentences as we were talking.
He is referring me to Dr. Adam Elfant, who has been listed as a “Top Doctor” in both New Jersey and Philadelphia Magazines for “Theurapeutic endoscopy, endoscopic oncology, ERCP, complex pancreatic and biliary disorders.” His office has a good relationship with him and he will facilitate getting me an appointment.
In the short term until I can see Dr. Elfant, he put me on Pamine Forte (methscopolamine brom) and ordered a new round of blood tests which I’ll get done on Thursday morning. I just took the first pill and I’m hoping for some relief by tomorrow.
Yeah! Progress! What a good thing that he recognizes where to send you to a doctor who does have the knowledge and willing did so. I’m not familiar with that medication. I’ll do some research on it. I hope you continue to feel better and please keep us posted on how you’re progressing. Thanks again for all you do!
Incidentally Judi, wasn’t professor Elefant Astro Boys handler in the cartoon? Large chap with a big nose and gray wrinkly skin – related to Piglets friend Hefalump? I wonder if he uses an instrument to do the endoscopy – or just his trunk?
Methscapolamine used to be use for peptic ulcers before they got PPIs. Nwo it’s used more as an antispasmodic. It’s either anticholernergic or anti muscanaric I think.
Scapolamine is a derivative (or vice versa, can’t recall) and available OTC here in a few preparations – sea sickness pills etc. Doesn’t help me worth a dam unfortunately but I hope it works for you.
Hasn’t helped yet, but he purposely gave me a long acting preparation to minimize side effects. I’m hopeful, given that my pain is definitely spasms. Thanks!
The story I’m getting regarding yellow stools – or in my case lack of “stools” (lovely subject but it’s important I think) – is that bile salts are what turns stools brown – so yellow indicates the absence of bile.
This apparently can be indicative of liver dysfunction. And It’s reasonable to assume any blockage of bile – like stones or SOD might do the same.
In my case 96% of the bile was getting through on the HIDA scan – but that may be because the CCK relaxes the cystic duct and SO (in SOD it’s paroxysmal and does the opposite).
The other reason for yellow stools I’m given is rapid transit through the small intestine with poor absorption of fats.
I think I’m going to go ahead and have my GB out. The study shows enough folks with high ejection fraction got relief to make it worthwhile – even if it can’t explain all the symptoms and why I didn’t get pain with CCK. Pain with low EF is no indication either.
Dr Toouli dosen’t think a high EF should be problematic – he just thinks it’s an example of very good functioning. He also says it’s not a new idea at all and has been around for quite some time.
But he wasn’ t aware of the recent study either – which was pretty convincing and even he thinks I should probably have the GB out just in case. He thinks it’s easier than sphincterotomy with less complications and worth a shot.
Hi all, I just got back from Dr. Elfant. Unlike every other doctor I’ve seen in the past few years, he’s very confident that what I’m dealing with is Type II SOD due to the elevated LFTs I’ve had. The other doctor thought it wasn’t elevated “enough” to warrant treatment. He wants me to have the ERCP w/sphincterotomy. So I’m going to do it once and for all (hopefully once). Scheduled for January 26th.
I have to say, I’m scared to death. His complication rate is around 5% and he does ERCPs daily.
For those that have had this done (most of you?), please tell me what to expect. This guy wasn’t exactly the stick-around-and-answer-warm-fuzzy-questions type.
Hello, first time on this site and I am a long time sufferer. I’ve had SOD for over 4 yrs. and still dealing with the pain. I’ve had the ERCP three times and stents all three times due to scare tissue. TPN for over six months. I wish you well and will pray for a safe procedure and recovery. If it’s any encouragement, I felt releif within a few days. My heart goes out to you and your family. Keep good thoughts.
Welcome Debbie,
Youve come to a great site with everyone on here willing to help each other with sharing our stories or what have worked with us or hasn’t worked with us and most importantly just being here for us to just VENT because we all understand what we’re going thru!!
Karen
Debbie, welcome! Is TPN a drug for autoimmune disorder? I have had recent issues that at first appeared to be unrelated to the SOD like issues that led me to this site in the first place, but now there is a working theory that it’s all being caused by an underlying inflammatory disorder so I am exploring that as well.
Karen, thanks for your reply above. I’m about the same but as of now on Motrin to treat the condition that seems to be causing the problem and then probably exploring if there is underlying condition causing all of my problems. Who says life is boring? LOL. Let us know how your appointment goes today and what is decided about the stents. I think the most dejecting thing about all of this is even if you get a definitive diagnosis, there doesn’t seem to be an easy fix.
Hi Judi! It is a very scary procedure to face. As you know, as always, the skill of the physician performing procedures influences the outcome. However, from what I’ve learned and experienced, this factor is more important than ever when considering ERCP. It’s good that he does ERCP’s daily and also a good sign that he shares his complication rate with you. Dr. Freeman did my first and only, so far, ERCP with sphincterotomy, in July. I had no complications as a result. I’m sorry to have to say that I also had no relief, in spite of the fact that I had very high pressure in my common bile duct, and he did put in a very short term stent. He has never said if I am SOD II or III, but from what I’ve read, I’m assuming II with high pressures and pain. I also have pancreas divisum. I got the results of my Pancreas Function Test today with the dreaded “normal” result. It wasn’t Dr. Freeman who did the test, so this doc won’t come to a conclusion without all of my test resuls for comparison. I have to wait to talk to Dr. Freeman tomorrow to get his opinion on where to go from here. I’m sure I’ve posted about Dr. Freeman’s opinion about the lack of understanding of this condition as a result of the lack of research. He’s told me they are learning every day. I will post what I learn from him tomorrow. Certainly, I am no medical expert, but I think I would go ahead with the scheduled ERCP. If I remember correctly, you got relief from the first one you did, correct? It’s so good to be communicating with you. I just wish it weren’t for the reason it is. I hope you’re feeling a bit better. Please let us know how things progress. Thanks again for being there and for creating this site that ha done so much for many of us!
Thanks, Kris. I’ve never actually had an ERCP before. I chickened out of going for it back in 2005 because I didn’t trust that the doctor I was seeing was confident enough. I’ve just been dealing with the pain and attacks, and I can’t do it anymore.
I’m feeling better today than I did a week ago, but nowhere near 100%.
Judi,
As you probably remember from my previous posts that I just had my 6th..yes 6th ERCP done on Dec 4. It is usually not too big of a deal if you get a dr that knows what he is doing. I have never had pancreatitis after any of them. I have had to stay overnight with all of mine and after the first one I went home the next day and that was a Friday and I was back to work on Monday. That was with having a spincterotomy done as well. I had pain for a day or so and then no pain pills and almost literally no pain for 2 years. It was so great! Just had an occasional mild flare up that would last for maybe a couple of hours and be over. Boy do I long for those days back!!
Two years later I had another and just almost the exact same story. No pain for 2 more years! The third time 2 years later the DR. put in 2 stents and I have never been the same. Usually they just give you a conciencous sedation where you don’t feel or remember anything but you are not completly under so you wake up sooner with less side effects. My dr said I become too combative now so he won’t touch me with out me being under a general sedation (being completly under) and I had a real bad experience to that when I came out it. I think you really should give it a go and see what they find and what they can do about it. I know it is scary but try not to worry about it. Just think how much better you’ll be afterward with the pain gone. I will be thinking of you.
Good Luck to you,
Karen
Thanks, Karen. I think it’s the conscious sedation that makes me the most nervous. I have had 3 colonoscopies, so I know what the drugs feel like. I’ve also had 2 endoscopies and I was completely out for both. The thought of being awake while the tube is going down my throat makes me feel far more uncomfortable than a tube going in the other direction if you know what I mean.
I’m glad you’re better! I don’t remember if I had general or conscious sedation. Whichever it was, I don’t remember it at all! I’m thinking it may have been general, as I well remember my colonoscopy, but that was because it took the dr. an hour and a half to do, with 2 nurses pushing with the palms of their hands, just to get the scope through because of all the adhesions that I have. Yikes. I was very comfortable during the ERCP and afterwards. I did spend the night in the hospital, which is standard procedure for Dr. Freeman to do with all of his ERCP patients. Mine was on July 2nd. I spent the holiday weekend with friends and went back to work, as Karen did, on the following Monday. I would do it again if Dr. Freeman feels it’s appropriate. I know what you mean about not feeling 100%. I communicate independently with several members that I’ve met on here. We joke about what a good day is now compared to pre SOD!
After my ERCP w/sphincterotomy I spent 48 hours in the hospital resting and 10 solid hours of vomiting up pure bile. It didn’t burn – it was more sweet and I was just very dizzy with every sound around me. Not sure if anyone else has ever had this happen. My doctor told my husband that there was so much bile backup that my body would be discharging it. We had no clue that I would be vomiting like that for so long. But, it was so worth it. By day four I felt like a new person and was able to eat again – even salad. I had a pretty good run for about a year or so with very little pain. But now it’s been three months of not eating much and pain everyday. The doctor says I’m pretty sick again.
Well, looks like we are having an ERCP done on the same day. I hope it goes well for you. I’m sure it will. Just stay positive and you will do great. I will keep you in my thoughts!
Hey Judi,
After suffering 4 1/2 years with SOD III, I found a 3rd GI professor to treat me during finals week semester 7 out of 9 while in med school. I was convinced after my studies I either had SOD or something wrong w/ the ampulla vedar. So, when He brought up sphincter of Oddi and I told him he was validating not only my own diagnosis, but also another professor GI who met me 3 1/2 yrs ago, he agreed to do the procedure the next day. I was crying and falling off a chair in his office and this was after a meal of “Buddha’s delight” w/ brown rice. Since my GI was Chinese, I’m sure he got a kick out of this from an acupuncture student, but hey you never know. My SOD cleared up immediately after the procedure. He came to visit me and asked if I needed anything for pain. I said. “What Pain?”
The next morning was my 42nd birthday and I was brought a soft breakfast including dairy products. I was like (Are they serious ? They want me to to eat dairy FAT already ? Well ok, I feel fine. And I ate everything. Later was told I was not allowed fat for 2 weeks and the breakfast was a mistake, but nothing happened. Then 4ms. later to the day it wore off and after visiting his office 2X and waiting 1 ms, I was still hurting and although he had some theories, he had no suggestions. So, thats when I found Dr. EVAN FOGEL in INDIANA and scheduled my phone conference, evaluation and procedure. I did get severe pain 24 hours later and wound up in a Pittsburgh U Hospital on the way home. THought I was having a heart attack because of a feeling of a fist clenching in my chest and pain spreading to my pects; I remained calm, kept doing deep breathing and found out that I had elevated Lipase for the first time. I was able to only take drink supplements for the next 10 days until the stent was removed from my minor papilla and I took food after that little by little w/Pancreatase enzymes and in 1 ms was ok. Stayed ok for 6 ms. until joining your site this past Oct. Then DEC ‘09 figured out the culprit, causes and medication which worked 100%. Eating a normal diet now and just needed my first Cymbalta increase this past Tuesday, because interesting enough w/ my “Breakthrough” migraine also came a “breakthrough” SOD attack.
I just want to take a moment to thank all of you who have been posting here over the past few years. I’ve said many times that it isn’t me who makes this thread what it is, it’s YOU. All I do is stay out of the way and try and keep the site up. And now that I really need the comments as a resource for ME, here you are and I appreciate it all the more.
I joined the big Yahoo group a few days ago, and it was a huge mistake. Those of you who are on it may have noticed that I posted. I mentioned this blog not to promote it or for some sort of competition to the group, but simply as a point of reference so those of you who post here would recognize me there. The woman who runs that group with an iron fist emailed me and made it clear that I was not welcome because, and I quote, “this isnt a place where other sod venues can come in and post about their venues.” She said a lot more, too. I was upset and hurt and unsubbed.
Please please know that anyone who comments here is welcome/encouraged to share what they have learned no matter where it comes from. Another site, blog, message board, medical resource…I don’t care. All I care is that people are coming together to try and help each other feel better.
Hi Judi! I am so sorry about how that woman treated you! I just don’t get people sometimes, especially when you’re all dealing with the same issues and could help each other out. It’s also easy to be mean sitting behind the protection of your computer. Maybe the best consolation is that while there are people who are mean for no good reason, there are also people who are nice and go above and beyond to be supportive. People on this site are like that and I am so happy to have found it. Let’s write that, um, person, off as one jerk (that is the nicest I can do to describe her) and hope we don’t encounter more like her! Of course we will, but there’s always hope! I get in trouble when I say “sometimes I just hate people” (apparently there are those who think that is a bad example for my kids – LOL (I don’t say it in front of them)) but there are times that it just sums things up well. Please keep us posted on how you are doing this month and of course when you have the procedure.
I hadn’t seen your post, but did go back and read it. You were in no way trying to promote this blog. Your comments were exactly like you said, a point of reference. Like Michele, I’m appalled. I’m out! Like you, all I care about is all of us coming together to help each other. Yikes. You really didn’t need that! I’m sorry you had to endure it. I hope your day becomes a better one!
Kris, my day is already a little better thanks to your comment.
The vengeance bitch in me wants to now start a SOD listserv that is open and supportive and collaborative just to show that wench how it could be done. But I guess I kinda already did that.
Judy, I am so glad you are better, and I hope the ERCP gives you some relief. I too have looked at that yahoo site and got turned off from it right away. I felt much more comfortable and welcomed here. I have not been here in a while do having a long extended episode myself. Take care, and thank you for bringing us all together.
Michele/MN
There was a site run by a certain Dr. Ishmael, I believe, and I first joined their’s, but once I joined yours, I was sharing the address w/ a woman from Scotland who had no support system over there. The Site blocked out the name of your site, then sent me a threatening letter, saying I may get kicked out for my “indisgression”. I felt like here I was dedicating my time and medical knowledge to helping others and I was going to get blacklisted for it ? So, I wrote a letter explaining to the others that the owner of the site should remind himself what country this is and how it is not Communistic Totalitarian Regime!
Hi Judi…it’s Laura…I also tried to mention the “patientslikeme” site and she wouldn’t allow it to be posted. That website is tracked by drs about treatments patients are receiving for MS, ALS and some other unusual diseases…so I thought SOD could be nominated if there were enough of us……it’s not about competition…we are all in this together.
About the ERCP w/spinc…I had mine Oct 26 09….I was fine and back to eating anything I wanted for about a month…and then symptoms started coming back…my regular GI just says “You had the procedure and blood levels are normal, You are fixed”….which is why I’m back to nausea, pain, and bowel issues!
I had really hoped it was going to stop the madness! Unlike a lot of people on this blog, I’m new to this, mine started in July 09.
I know there are others that have said the ERCP worked for them or provided a longer period of relief, so I pray that it works for You! I have switched my insurance at work so I can go out of my local area. The Dr that did my procedure in Boston did not want to go into the pancreas. The procedure itself was really no different than the regular endoscopy….other than I had to stay the next day due to higher liver enzymes. They give you enough sedation that you won’t even see any equipment or feel it. I woke up with no memory of it….just some pain, but tolerable. They did have me lay on my belly on the table when I went into the procedure room. Everyone was very comforting and nice which made it easier. I hope it works….take care.
Laura, unfortunately, your case sounds like mine, if they don’t do a sphincterotomy of the minor papilla by going into the pancreas as well, its as if you can never get total relief. And that’s so frustrating, that we are each made to go through at least 2 ERCP’s in order to make some headway. I’ve had an Interstitial Cystitis attack for 1 ms, and it was ushering in an MS relapse of this week and I just got rid of my migraines and SOD w/ Cymbalta just in time for this relapse. I was so happy and working and now I can barely use my left foot and the bladder pain is shooting down my left leg and I know I’m venting but I guess it just shows you that your in the right place. I also belong to the Patients Like Me site for MS. And my official diagnosis is “Possible MS Prodrome” which means I have all the symptoms but no lesions on the brain or spinal cord, which means by law I can’t receive treatment or necessary help if it ever came to that. May I ask which PLM site you belong to ?
Nymphaea
Hi Nymphaea, I haven’t officially joined the Patients Like me site…I just visit it….I have MS symptoms also. I was diagnosed by the lst dr I saw 3 1/2 yrs ago, but I wasn’t totally comfortable with him . So I went to 2 other drs which made matters worse. One said I didn’t have it but didn’t know what was wrong and the other told me to be glad that my symptoms weren’t worse! I use to be able to walk normally and I walked 5 miles a day, now I have ataxia and a can’t walk right. I do have an abnormal MRI but my lumbar punction was normal. I recently changed my insurance so I am going to find a different dr when I get the courage to do it again. As I’m sure you know, it can take many years before you finally get a diagnosis…..it just stinks when you have two or more crazy things at the same time!! SOD & MS ….but you’ve got to keep on going!
Hey Laura, Yeah I know. I’m working at a new Trauma Center and was hired and started work during a remission. And wouldn’t you know it my flare has been showing it’s ugly head everyday this week until yesterday I awoke unable to use my left foot properly. I stayed in all day yesterday and today I practiced walking on the board walk all bundled up w/ my honey who pushed me and seriously w/ BREAKS I was able to do it w/ my MBT sneakers. So now I’m having a little trouble but I think as long as I take a lot of breaks tomorrow I should do ok at work tomorrow. I don’t want anyone to know. I love my job and want to keep it.
Nymphaea.
Has anyone heard from Melea? Last I read here, she was in the hospital with a tentative diagnosis of amyloidosis, but it has been awhile and I’m just wondering how she is. Thanks.
Thank you for the welcome. I have been waiting for a site like this just to know that I’m not the only one out there in pain and just managing through each day. Michelle had asked about the TPN. It’s liquid nurishment thru a bag. 12 hours on 12 hours off. I got to a point I could not each or drink and dropped over 40 lbs in less then 3months. NOt a good time. Also, I am interested in the outcome with Melea. I had been dx’d wtih amyloidosis a few years ago. I had a tumor removed from my eye and went through treatment that really scared my husband and myself. I hope for her sake it is not. BUT if she is dx’d with amyloidosis that scares me even more. Since there are just too little medical studies being done on SOD and amyloidosis – could there be a connection. When I found out about my amyloidosis it was basically a death sentence. (not meant to scare anyone) but the truth is, the only documentation out there had been on lab rats. When the tumor was stained with the congo red dye it was positive. I remember sitting in the specialist office and he said to get my affairs in order. I had five years at best. WELL, that was almost 15 years ago. I refuse to let this get me down. Hope Melea will be ok. Please post when you hear anything. Thank you and I am very glad I found your site.
Welcome, Debbie! This is a wonderful site and you will find alot of support here. Wow. You’ve been thru ALOT! Your message will offer Melea hope. I have not heard from her and have also been concerned. Her last post was on the 18th or 19th of Dec. She was in the hospital. I told her that I had intended to visit her on the 19th, but then I ended up with my mom in the ER for heart issues that day. She’s ok, thankfully!
Melea, if you’re reading these and are able, please post us an update about how you’re doing!
Again, welcome, Debbie! I’m sorry you had to find us here, but you’ll love it here!
Kris,
Well I went to three different dr appointments today and I am exhausted! It’s funny how it all owrked out that I could get into all three of them in the same day. I had 2 appointments booked and then called my pain dr to see if I could get into him today and was able to get an appointment so that made three! I went to my regular dr and she saaid that my bladder infection is gone. I asked her if I couldn’t just have a standing order to come in and get tested so I wouldn’t have to wait for an appointment and she said yes. Then my pain dr said I could increase my number of pain meds so now it should last me a month. He wanted me to go on the long acting med and I told him we tried that already and I do better with just the oxycodone so I can adjust it better if I have to. He agreed. The third dr appointment was with my GI doc and I go back in on March 11th to have this stent taken out and possibly another larger one put in. He said he won’t know until he gets in there what he is going to do yet. I told him he needed to do something different with the anesthia because I don’t want to go thru that again and he said maybe they can give me versed to help keep me calm while I’m waking up. I hope they do that because I’m already freaking out about it!
How are you feeling? I hope you are over your latest flare up.
Judi are you doing better now?
Michele are you doing better also? I know a few of us on here had a rough week and hopefully everyone is on then downslope and now starting to get back to “normal” whatever that means to us.
Karen
Wow. What a day you’ve had! However, the results sound really positive on all fronts. The scary part is facing the procedure. At least the dr. has a recommendation about what to try to offset the previous problems you’ve had with anesthesia. It’s good to hear from you! I’ve had a few good days and a few tough days with this condition that has decided that I have not control. I have to say that I hate that! You are right. There truly is a new definition of normal! Let’s talk more tomorrow. I’m beat and have my grandsons tonight. I’m still trying to get them to bed. They have the classic excuses. I need more water, I’m hungry, etc. It’s fun!
Welcome Debbie ! I can’t believe this SOD syndrome is associated w/ Amyloidosis. And 2 cases in such a relatively small amount of time. We are all very honest on the site even if we are confused about terminology. And although the other members of this group are aware I have had recent bladder woes, what they don’t know is I’m suddenly running high levels of protein in my urine. So, together we are strong in this “no embarassment zone” and its amazing how many answers we are finding together.
Hello all. I’m new to the site but been following for a few years. Been suffering with SOD since 2005. In 2008 I dropped to 95 pounds and was deathly ill so I had an ERCP and sphincterotomy. It saved me. I was able to eat again and had six months with no pain and a year of only a few bad days here and there. Unfortunately my lipeases are back to being slightly elevated and I’m now on my third month of solid pain and limited diet. 75% of time spent in bed, sitting, resting and curled up into a ball. Went to ER twice this past week. My Dr. that performed my first ERCP referred me out-of-state to Dr. Cotton. I see him in two weeks to have an endoscopic ultrasound of the pancreas and another ERCP. It’s been really hard these days and I just want to thank Judi for this blog and everyone on this site. Just reading everything on here has given me much support.
Also, I want to hear more about Amyloidosis. Does anyone out there suffer from SOD along with any other metabolic or neurological disorders? This is all very interesting to me.
Shelly,
Everything vanished on Cymbalta, the pain, nausea & loose yellow bowels returned to normal and still are, but I needed my first increase last Monday and last night and today I had 2-3 level pain after ingesting olive oil. So, that tells me to swing back to a low fat diet and maybe I have to be on the increase for a couple of weeks for full remission of symptoms, again like I was enjoying a couple of weeks ago. I’ll let you guys know how I am doing.
I am so glad I found this site. I can’t tell you how much it make me feel better just knowing that others out there have the same symptoms. I had so much bile in my stomach that they had to insert a NG tube to drain it all. I spent 30 days in a hospital just until I was stable enough to be transported to Baltimore. Then spent another four weeks and discharged home with a visiting nurse for six months. TPN was over a thousand dollars a bag just to keep my body weight stable and keep me alive…..All in all when that happened I counted good days because there were so few of them. Then I counted bad days because they were so few but now it’s been three weeks of constant pain. The spasams are constant everyday but some days are worse then others. The last three weeks were quite bad even ended up having a stat ct because of the vomiting they thought I might have ruptured something. PAINFUL>>>>I am not sure how everyone else is trying to stay one step ahead of this but I found that if I eat a BRAT diet, that seems to work very well with the nausa and pain. Bananas, Rice, Applesause and Toast. Sometimes I eat this for months until the pain subsides. Does anyone elses pain start in the upper right quad and comes around in a C pattern to your belly button? When I have the spasams that is the constant pattern that I have. Fevers off and on, loose stool with the greasy layer in the toilet. Good stuff to talk about but no one else is doing much research on this due to the lack of patients with the disease. I have factor V lienden ( a blood disorder that you get blood cots for no reason) and the amyloids. If there is anyone else out there with this, it might be a connection that other specialist have not come across. I would like to find a cure for this just as I am sure you all would. Getting older and not sure in my older years if I will be able to cope with the pain. I hate taking medication and find myself not taking pain meds as I should and then the pain gets ahead of me and then there is no control. Please, if you have suggestions, home cures that help you through the rough phases, I am all ears. This is not fair to my husband or my family. I cannot go on vacations with out knowing where the nearest hospital is and I have missed out on so much because of the pain with my friends and family. I am blessed for every day I am here and there is a reason that I AM still here because this almost took my life twice now. Maybe the reason is to help other cope with this illness. God bless you all. YOU and YOUR families. I know a young lady that when this happened to her, her husband left her because he could not support her. I have not heard from this young lady in over a year but she was really bad. She had to have a pump inserted to help cope with the pain. Thank you all for letting me voice my thoughs.
Ginger tea and candied ginger calms down nausea and all pain syndroms in the body, boil some fennel seeds and this tea is also amazing. Aloe Vera Gel 2 oz on an empty tummy every morning 1 hour before breakfast also has amazing healing qualities for the whole GI route. Shark Cartilege is keeping this Dr. alive in Long Island who has had Pancreatic Cancer for years. Ursodiol RX is a bile acid known for breaking down Gall stones, however it also erradicates bile chrystals and salts which can “sludge up” the ducts. Works overnight for me when I am chronic. I need 3/day then , 1 w/ each meal, so if I have a 4th “meal” of a snack it has to be fat & protein free in order for me to digest it w/o Ursodial. (Don’t let the name fool you, it is SYNTHETIC Bear bile, not real ! ) I also need 4 Pancreatase MT20’s w/ every meal when I’m chronic. If all else fails, I drink liquid protein drinks and eat pretzles ! Pineapple produces an enzyme called Bromain & Papaya produces Papain. Both can assist digestion. Other than eating it cooked or raw, Natural Stores sell a roll of these enzymes to carry in your purse. Hope this gives you some ideas !
Hello to all,
I had my gallbladder removed a little over three years ago and have been on the roller coaster ever since. Like many of you, I have some URQ pain, but mine is mostly in my back and when it acts up I get yellow stools etc… you know the story. Just told by a new GI doc that I have IBS, which I never had before. More and more, I believe I have SOD, though blood tests on liver and pancreas have not shown anything, nor has MRCP. Anyway, I was writing in regards to Nymphaea and others with MS and wondered if you had tried or heard of LDN, or low dose naltrexone to treat it ?
Oh, the dreaded IBS diagnosis, the blackhole doctors throw us into when they don’t know what else to diagnosis. It’s really tough to find a GI who understands all of this! What area do you live in? One of us could possibly suggest a dr. that could help you. It’s a long journey to find the right dr., but worth the trip! I’m sure Nymphaea will reply to the questions you’ve asked.
There are many of us with SOD who have never had eleveated enzymes, normal pancreas and liver tests, normal MRCP, yet we deal with SOD issues. I fall into the category I just wrote about. I did have highly elevated pressures that were found during my ERPC this past July, which is indicative of SOD. ERCP is the gold standard for diagnosing SOD. It’s really important to find a dr. who is well experienced in performing that test. It carries a high risk of causing pancreatitis as a result. The skill of the doctor performing is it is the biggest factor in minimizing the risk!
Hello Drex,
Oh, Kris Knows me so well already LOL ! Welcome or as we say Benvenuto ! I wonder how you know about LDN ? Do tell ! But seriously, I am only “probable MS Prodrome” otherwise I am only unknown Nuerological condition. Although, I’m sure the others in this group will tell you, I do my research, and truthfully w/ my flares it can only be MS, but the early stages, so therefore, w/ no Lesions showing up on my brain or spinal cord, by law I will never be allowed ANY MS medications, even if I have 20 MS symptoms. 5% of adults over 40 have such an MS case. Some are only confirmed on Autopsy. Because some lesions are very far within the brain and do not show on MRI, others are many but pin point and simply too small to show. Naltrexone and other Methyltrexates are Cancer medications and very serious medications which can do more harm then good to certain people. The famed “ABC” drugs which are Beta Seron, Interferon, & Copaxone all cause Pancreas & Thyroid damage, Since I have SOD, pancreas divisum ans Hashimoto’s Thyroid, I personally will never try them. But it doesn’t hurt to mention such and I’m really glad you jumped in and did !
Nymphaea
I live in Columbus, Ohio. I stumbled accross information on LDN while researching IBS and Crohn’s. I have not had an ERCP, and have not asked for one because, frankly, the risk of pancreatitis scares the crap out of me and it seems like the sphincterotomy doesn’t help alot of people anyway. I just started seeing a new GI doc and haven’t discussed SOD. I could probably talk my Primary doc into about anything if I wanted to force the issue.
Hey Everyone, Once a year I go back and try to see a Dr. about this horrible thing I have. I had a ERCP and sphincterotomy 3 years ago and it didn’t help. Even though Dr. said this is what I “Had”, he said he cured me. Yea, right. I’m on pain management, thank God or I wouldn’t want to be here. Ok, Bedhead told me about the Dr. she saw in South Carolina, Dr. Cotton, so we called his office and sent all the paperwork and files on me for the past 4 or so years. The lady on the phone said she didn’t know if he would take my insurance or not. I have Care First , Blue Cross Blue Shield. For some reason I thought most Drs. would take it. It’s been over a week and no word from this Dr. I live in Ocean City, Md., about 3 hours for Baltimore. Does anyone have a great GI specialist they can tell me about. I’m trying to get something lined up for the spring or summer when I’m off from my job, I work at an elem. school. Please let me know. I have been to University of Md, they did the ERCP and John’s Hopkins says I have IBS. My son’s girlfriend’s mother is the president of Md General Hospital, you would think I would know a good Dr. Thanks
I heard that you were referred to Dr. Cotton but you stated here that his office
hasn’t called you back? I know how frustrating that can be as it’s happened to
me also (not from Dr. Cotton’s office) but I would still try contacting them
again because I have heard so many good things about that group in regard to
CP, SOD (biliary disease in general). In fact, if I wasn’t already situated with
MF in MN (Dr. Freeman) I would most definitely seek out Dr. Cotton.
I’m not surprised his office questioned your insurance as that is happening all the time now, even with BCBS. We also have Blue Cross insurance and they have
begun questioning a/o turning down just about any claim they’re getting right now. Our broker calls it “posturing” as they go about negotiating with doctors, hospitals, even our govt trying to figure out how they can keep making that almighty dollar, etc., etc.
I can very highly recommend Dr. Freeman/Univ. of MN for the ercp. I was and
probably still am at very high risk for AP via ercp but he was able to complete my ercp to include a large cut to my cbd, doing a balloon sweep of all the sludge and stones, then finished it off with placing a stent in my pancreatic duct in order to prevent post-ercp AP which was successful. YAHHHH!
Best Wishes to you in whomever you decide and a rule of thumb is to choose a doctor who does the ercp at least 1-2 X/week.
I’ve been doing some more research and come up with some useful stuff. It seems you can get IBS of the small intestine (it’s less frequent but still common) which can give all the symptoms we get.
I found a web site that went though all the signs and symptoms and it ticked all the boxes: worse with SSRIs, worse with opiates, worse with wheat bran, better with water, better with nitrates.
Seems fiber is the crux of the whole deal. I’m getting mixed reports but either insoluble is good and soluble bad, or vice versa.
So I’m using Normafib (which says it’s insoluble) and it seems to help. I just started a course of Rifaximin as well (had to have it shipped out from the USA as it’s not approved here – and man it’s not cheap without the govt subsidy). So I’ll let you know how it goes. So far no flare up with it.
I’m also looking more into high ejection fractions. There seems to be a definite association with IBS . So A might cause B or vice versa.
I’m having a surgical consult as there seem to be enough evidence that high ejection fractions warrant GB removal. I’m concerned that if it’s SOD it will make it worse – like many here. Unfortunately the ERCP manometry couldn’t test the SO and the doc thinks I should have the GB out before risking a second attempt at manometry – even if it’s just to rule it out as a cause.
I didn’t even get a touch of pancreatitus with both pancreatic ducts canulated so I’m not concerned with repeat ERCP – but I think he’s worried more that he simply won’t be able to get in again so it’s a wasted trip.
Hi Brett,
Nice to hear from you. Glad you’re being introduced to new & productive findings. Still doing good myself as long as I don’t overdo oils. Busy at this trauma center for car accidents ! I swear I feel like I’m working an ER some days ! Prior to their car accidents, 2 of my patients survived gunshots and multiple stabbings ! I bet it’s safer down under ?
Nymphaea
Brett,
I thought some of these doctors prescribed anti-depressants (ssri’s) to combat IBS. You’re saying they make it worse ? I take remeron, which is an SNRI. None of it seems to make a difference. I also have dicyclomine. I’m not sure what that does, not much of anything as far as I can tell. I assume you’re taking the Rifaximin to treat SIBO. Did you get a hydrogen breath test to determine if there was an infection ? Just curious. Don’t forget to take a good probiotic while you’re on it. Nymphaea mentioned Ursodiol in an earlier post. Is that the prescription Actigall ? Is it helpful in any way?
Yes Drex Actigall is Ursodial. And I think the other RX you were speaking of is Bentyl or Hydrosyomine ? OK the spelling has me ! Its the IBS drug. Didn’t do a damn thing for me either. I yelled at my doc and told her not to give me Peppermint candy again LOL ! Ok there were some explatives in there, but I wasn’t a medical professional yet, and I was so thin and sick ! 130 lbs @ 5′7″ ! Vicodin just to get out the door. Then the Vicodin would give me a migraine ’cause I was allergic to opiates and didn’t know it. Fun Times ! That was Fall 2005 ! I thought it would be my last Christmas ! Nobody could help and Nobody knew what was wrong !
I’ve written on here not long ago, but it didn’t go throught. Sent all my records, which is a lot, to Dr. Cotton in SC. He will take my insurance. Now to see if he will see me. Even if he doesn’t see me till the spring, I have waited this long, 4 years now.
Yes..it seems like high fiber foods really send me into lots of pain, like you describe. I had cereal last week and it did that to me. Being active seems to help me. I’ve learned that I cannot be horizontal after I eat. I have to either sit up or stand and move around for a while. You may want to try
I find much the same. Some research has shown that different types of fiber have different effects. It seems insoluble fiber can really do a number on the gut – but soluble fiber helps.
I also find lying down is a problem.
I just don’t know if this points to an IBS diagnosis or not but I know I’m getting nowhere with IBS type interventions, diet etc.
Hi know what you mean. Laying flat is very difficult and it hurts most in the mornings when I wake up. But the IBS inerventions do nothing for me either!
Hey Guys,
I’ve been away awhile getting surgical opinions. I came across a wonderful doc who thinks the high GB ejection fraction may be the problem – but is non committal.
(I always thought the diarrhea and worsening with narcotics was a deal breaker regarding the gall bladder but a friend wrote and told me she had severe pain with narcotics, and diarrhea before having her GB out and now the symptoms are completely resolved. So I pushed ahead with the surgical consult)
This doc was fantastic. He listened to the difficultly I had because they couldn’t cannulate the CBD during the ERCP – so they couldn’t manometry test or do the sphincterotomy. He said no big deal when I take the GB out I can thread a wire down the cystic duct to the CBD and they’ll use it as a guide for the sphincterotomy – no problem we’ll do both at once.
I now have to decide if I want to put all my eggs in the GB diagnosis – or do a dual operation. If the GB removal doesn’t work then they may not be able to canulate the CBD later. But if I have the sphincterotomy on a healthy sphincter I may be setting myself up for reclosure issues down the tract – just the reports here show it’s very common. Tough call either way.
On a different note I just tried Rifaximin – the antibiotic they recommend for IBS – an expensive waste of time that I gave up after 5 days of progressive worsening. I then tried zofran – another IBS drug for nausea – an even more expensive waste of time.
But out of desperation I gave baclofen a try. So far it works even better than lyrica -well worth a look guys and it’s not very expensive. It doesn’t seem to leave me feeling out of it like lyrica does either.
Yes there’s evidence some people develop SOD as a result of gall bladder removal – as many as 10% by some reports. That’s why it’s called post choli syndrome by some.
In my case if they did both remove the GB and sphincterotomy the problem shouldn’t occur.
I believe you have looked into studies regarding the probative value of HIDA scans for determining SOD. Have you seen any literature addressing HIDA scans with possible SOD findings when GB is intact? I am wondering if and how the presence of the GB impacts the result and/or interpretation of such result.
I was actually thinking the other day, that maybe in people who have had their gall bladders removed and still have pain and the other issues we have, the gallbladder was not the problem. The problem was SOD to begin with, only misdiagnosed as gallbladder because of a low ejection rate. IF there was an SOD problem couldn’t that cause a low ejection rate in a HIDA scan ? Removing the gallbladder just narrows the possibilities of the source of the problem and the true issue of SOD isn’t recognized until the gallbladder is removed and doesn’t improve the situation. Especially in people who don’t have stones.
Drex, I think you’re absolutely right. In my case, I had an ERCP this week and the doc found that my pancreatic duct was 2x the size it should have been. I’ve always believed my issues were more around the pancreas/SOD and my gallbladder that came out in 2002 was collateral damage.
The consensus seem to be a HIDA scan is of no value at all in predicting SOD – though many docs seem to think it is and common sense would dictate that a spasmed SO would reduce the flow and give a low ejection fraction.
My doc is the best in Australia – in one of his articles he says that HIDA scans have a 91% predictive value for SOD – and his associate said I couldn’t have SOD based on the HIDA scan results ;yet when I gave him the study that shows it’s useless – he agreed and said his research shows the same!!??.
I have one study that says SOD can be clearly shown on HIDA scan by first looking at the ejection fraction after morphine then using nitrates – which makes sense but wouldn’t help in type one and two.
My feeling is if the SO responds to CCK properly it will dilate and the ejection fraction will be normal – so a HIDA scan will only show SOD if there’s an abnormal response to CCK and this may not be present in all SOD.
Here’s the results of the study on HIDA scan and SOD – and my docs response in capitals (SOH is sphincter Oddi hypertension SOP is manometry, EF is ejection fraction on HIDA scan. PPV is positive predictive value) Note especially the last sentence:
Results Of the 93 patients with both HIDA EF and SOP measurements, 50 had abnormal EF (40 mmHg). Of the 43 patients with normal HIDA EF, 30 had SOH. The sensitivity was 49%, specificity 38%, PPV 58%, and NPV 30%. Eighty-six of the 93 patients returned
> for follow-up evaluation. Follow-up ranged from 0 to 99 months, with a mean of 26.4 months. Overall, 73 patients (85%) improved. Of the 46 with abnormal HIDA EF, 42 (91%) improved. Of the 40 patients with normal HIDA EF, 31 (77.5%) improved. The sensitivity was 57.7%, specificity 69.2%, PPV 91.3%, and NPV 22.5%.
Conclusion Although the PPV of abnormal HIDA EF is high, it is not much better than the clinical impression. The sensitivity and specificity are marginal. The NPV is poor. Based on the review of these 93 patients, HIDA EF is not reliable for identifying CAC. We recommend that patients with normal HIDA EF have additional testing or consultation before ruling out CAC. HIDA EF does not predict SOH.
> THESE RESULTS ARE VERY SIMILAR TO A SIMILAR STUDY WE PUBLISHED APPROX 20 YEARS
OR SO AGO.
Huh….????Then why tell me my SO is fine based on the HIDA scan?
It still boggles my mind to see how widely the studies and opinions on this differ, and how doctors can hold onto their beliefs despite all evidence to the contrary (well, I guess that is not reserved for doctors only). I had thought you had come across studies showing that a negative finding of SOD on HIDA is meaningless; thanks for confirming it. Now, if your HIDA scan had showed possible SO but nothing abnormal about the GB, I wonder what your doctor would advise. It’s a tough call – not that the one facing you is any easier. Seems like doctors prefer to try GB removal first – odd as it is, that seems safer than ERCP. I wonder, however, what happens if someone with that finding who does undergo GB removal and continues to have the symptoms – i.e., does it make the initial “possible SOD” finding on prior HIDA scan more relevant, or do you start from scratch? I am not sure if the study means that negative HIDA scan cannot rule out SOD, or that even positive (or possible) SOD finding is unreliable.
In your case, based on the past posts I think I would do both – wasn’t your duct so tight that the doctor couldn’t even get in? I would have to think that is indicative of something with the duct that they could address at the same time. I don’t mean to sound as if I am saying this lightly – I have read enough stories here to know why you are concerned. Can they also check your pancreatic duct? I think you may have had that checked in the ERCP – I apologize for not remembering.
All of this is very interesting stuff that I wish none of us had to ponder.
Hi
Wow, who knew that there were other people with the same issues.
I had my gallbladder out in 1999, 3 months after I had a baby boy.
I had numerous problems after that, that sent me to the hospital every 6 months or so. Doctors had me do so many scopes, I lost count, and I am sure I have scar tissue all over.
I finally went to a GI doctor in Evanston , IL who told me i had SOD, I also saw a specialist in Milwaukee…
I have been on a medicine called Amytripltalyne ( oop on spelling) that has really controlled the pain.
I had the surgery 2 times and the muscle cut, and was suppose to be fine, but I am a lucky one who still had attacks.
I am curious if there is anything new known about this sucky disease?
I have started having Tyroid issues and it does relate to the medicine I am on for SOD….
Any news, any great doctors in ILLINOIS who know a lot about this??
OK De, yes we both have thyroid issues , I have Hashimoto’s along w/ 5 members of my family. Which is hypothyroidism. I’ve had it before most of my other “Stuff” ever started. How does it relate ? Well lets just say Hashimoto’s is an auto immune disease of the thyroid and with a break down in the immune system anything is possible, other than that the thyroid and pancreas are both endocrine glands. Best of luck in your continued research.
Nymphaea
I am in the same boat. I had hypothyroidism way before my GI problems started. Are they somehow linked? I have never even considered that? I wonder if men experience this also? Brett?
It’s an amazingly tough decision to make and most of it is down to guesses and hope. Yes most docs think it’s easier to take the GB out first.
Pros – high success rate and full cure if it works. Less risk than sphincterotomy – no pancreatitus.
Cons diarrhea, intolerance of fatty foods and worse SOD pain if it’s SOD. Can cause SOD if you didn’t have it to start with.
From the studies I’ve read since you should get right sided pain, worse with fatty foods and reproduced with CCK on HIDA scan. Some studies seem to say exactly this – some studies show no correlation.
My friend had right sided pain, intolerance of fatty foods – but diarrhea, and worse with morphine.
I can’t reconcile my symptoms with GB. If it’s a problem it should flare up with CCK and fatty foods. Yet it flares with morphines, codines and fiber. It definitely improves with baclofen and nitrates so it’s definitely a smooth muscle problem – but that’s the SO, GB and intestine.
The diagnosis the fits best is IBS of the small intestine but I just can’t see this level of prolonged pain and nausea from that and I’m wondering if combinations are possible – nothing in the research so far. But IBS is associated with increased GB ejection fraction in one study.
You can drive yourself mad trying to figure it all out. I’m going with a capsule endocscopy – $100o – to rule out things like SB diverticulitis. If nothing shows up I’ll go with the GB removal. I’m just not sure about the sphincterotomy.
I just read again recently that it has a very poor success rate in type 111. And you can get reflux up the duct once it’s cut causing ductal injury and inflammation – make sense really, you don’t put a sphincter where you don’t needed it.
I asked my doc to do a botox injection but he said it has a high risk of pancreatitus. All the research I have read says a lower risk. It’s just driving me crazy trying to get a doc who makes complete sense with what I have read.
My doc says when you cut the sphincter properly it releases tension on the pancreatic sphincter as well – so no need to stent. Some research agrees – most says you need to stent. Round and round you go.
I certainly do not envy you having to make that decision. During your last EUS, was your bile tested for evidence of sludge or stones? This may sound odd but I sort of wish that were the case so you’d have more of a clear cut answer on at least what to do about the GB. I feel almost lucky that I knew virtually nothing about this – from the time my issues began until my GB surgery, I knew nothing about SOD, which at least made the decision on the surgery easier. My GB was inflammed, so I suppose it was the right thing to do even if I am continuing to have the same issues.
I do know now that in III, there are studies showing low success and high complication rates. However, from reading the posts here and some other reading, I am not sure how much better types I and II fare.
I am scheduled to see a rheumatologist next week to see if I might have an underlying inflammatory condition that is causing the GB/SOD like issues as well as some other issues. Have you consulted with one? Do you have any other symptoms/issues that might suggest that?
In collecting my volumes of records to send to that office, I noticed something in a report from a HIDA scan predating my GB removal that seemed to indicate possible SOD – since have figured out that is not the case. If the rheumatologist is a dead end, I think I also am having the capsule endoscopy – really would like to avoid if I can (were you told about the prep?). Ugh.
I am sick of the round and round already and I am relatively new to this merry go round. Hardly can imagine what you’re feeling at this point.
My friend is a rheumatologist ( I though it was a Latin name for an interior decorator). I have all the HLAB antigent tests for rhuematoid factor as well as fecal calprotectin for Chrones and inflammatory bowel disease. I insisted on this early off.
The medical literature and studies doesn’t seem to be supported by the reality of patient reports. They claim a high success rate with sphincterotomy in type 1 and 11 and a 50% success rate with type 111. Yet the only 2 year follow up study found an 8% success rate in type 111 – near enough to zero.
As for reclosing and scarring over they tell you 10% in 10 years – but way more than that is reported here here and my doc told me to only have the SO cut if there’s unequivocal evidence – as she see a lot scar over – so much that they routinely use progressive stents to open them and do not recut after even a single reclosure. One thing I do know is it appear the pancreatic sphincter is way more prone to reclosure than the SO.
I don’t think a HIDA scan is of any value in diagnosing SOD. It sounds logical that it should but the studies don’t support it.
I imagine the prep for capsule endoscopy would be the same as the prep for colonoscopy – which I’ve had. You drink a gallon of what tastes like swimming pool water?
I am glad that you at least took care of the rheumatological route early on. I am not that convinced that there will be real answers for me, but enough evidence of something that it is worth a shot. I have had inflammatory bowel disease ruled out already.
I too have been frustrated by the conflicting reports – on the surface, when you start researching postcholycestomy syndrome (which is how I came to this), most of what you read is that if you do have SOD, you go in for one ERCP and that’s it, you are done, cured. As we all know, not the case.
At my post GB HIDA, the nuclear medicine fellow told me he thoought I had SOD, but was overruled by the attending, who said that what looked like spasming to the fellow was a typical, “normal” way that the SO acts after GB removal – basically trying to help take over the function. Had not heard of this before (or since, really). I guess yet another example of interpretation that has frustrated all of us.
Yes the capsule prep is similar to colonoscopy. Frankly I didn’t care about the, er, cleansing part as much as drinking 64 ounces of anything with Miralax in it! That made me sooo nauseous. Barely kept it down when doing the colonoscopy prep. I may take a Zofran before I start. Also if I do the capsule it will be from a Monday-Tuesday so that means the fun will be on Sunday with my kids around. That should be interesting.
We should do it on the same days!!
Brett, I understand and feel for you. I’m in a similar position. It can make you crazy trying to sort it out, and no one doctor says the same thing, even the well known ones. A top Oddi doc recommended I have my GB out but docs at Mayo said since I have some radiology consistent with oddi, it would make the SOD worse. In your sitution it is a terrible call to have to make.
Mayo doc said morhpine and codeine often make SOD act up, as does fiber (I’ve seen this myself). The sphincterotomy is dangerous no matter what anyone says. And what I found is that doctors often don’t tell patients that once you do it, many times it scars and you are sentenced to a life of repeat cuts and ERCPs.
I’m in limbo myself, so I do understand. Doing all that research will make your head spin. Just make sure you are comfortable with whatever decision you make and don’t let anyone push you into anything.
I’d be interested to know what radiology they used to diagnose SOD? They only radiographic test I can think of that is thought (wrongly) to give any indication is a HIDA scan?
It does seem to me GB removal is a better gamble – but a big gamble. When it works it works well and there’s no chance of pancreatitus – when it doesn’t it makes things much worse. My doc recommended much the same. Seems to me though if the GB is squeezing out 96% all the time it must put more pressure on the SO.
There was one person here who definitely had type 111. She had the GB out and symptoms improved, but was still in pain – she had the SO cut and got complete resolution. So no matter what they say it can work in some people in type 111. I think the reason for the poor results is some up to 60% of people have pancreatic sphincter involvement – others have IBS or visceral hypersensitivity and other have GB issues.
I’m wondering how many failed sphincterotomies in type 111 actually have high ejection fractions undiagnosed.
There’s no doubt at all about morphine/ codeines etc. But here’s the rub – they’ll also flair up a sensitive gut and you can have narcotic bowel syndrome – so it’s not diagnostic.
I’d be very interested to know why they think fiber flare the SOD? This is the major issue for me that keeps me looking at IBS solutions but if there’s a clear link to SOD I’ll stop looking in that direction and go with my heart not my head.
I’ve had exacerbations and remission that make it confusing to tell if something really helps or not but so far I’m absolutely thrilled with baclofen – even better than lyrica and way better than Doxipin with less side effects. I’d recommend it for a trial for all of us. It’s cheap as well.
I had elevated pancreatic enzymes and a secretin mrcp which showed pancreas duct did not drain the way it was supposed to. The HIDA did not drain properly either. Did you have a secretin mrcp?
I have no idea why fiber aggravates. I was told that it does and I have experienced it myself. But I don’t know of research to show it. It may exist somewhere.
I’ll look into the Baclofen and see if they may prescribe for me. I wish there was something more I could add to help, but there seems to be so little to actually help people in our situation. But if you have not had the s-mrcp, I’d at least want that, but I’d ask your doctors first.
Hi, it is me, no one ha s commented on medicine yet, so I thought I would put it out there again.
I am desperate to fin dsomething to control the spasms. I had the”cut” and a stent put in and taken out, and was told that the opening closed up ( I am not sure what happens next) just repeat the scopes, the cutting the scarring??
I am deeply saddened reading about everyones issues, it is crazy! I was NEVER told I might have SOD when the took out my GB, and though I assume ( bad to do) that I really needed it out, after my major attack, I feel like I was so healthy before.
I never even had a doctor, before I had my GB out, now I have so many…
Does anyone have the spasm under control? I am not sure if I am crazy, but stress and my monthy period ( sorry guys) really effects the pain level ( anyone else)??
Thanks for any feedback, just need it to know I am not alone
This is the third attempt at posting – one last try.
First some questions.
1. Did they have any positive tests to indicate the GB or did they just take a random shot?
2. Did they have any positive tests for SOD or was that just a random shot when it got worse with GB removal? I’m assuming you had no elevated enzymes or dilated duct or they wouldn’t have gone for GB removal first.
3. Did you get any pain relief with the ERCP sphincterotomy prior to reclosure.
4. Did you get any relief with the stenting – was it for reclosure or only to prevent pancreatitus at the first ERCP?
I’d recommend a trial of sub lingual nitrates for acute attacks and baclofen for long term antispasmodic. I’m not convinced you have SOD at all but it’s worth a try.
You may also want to consider continuously taking the pill to eliminate periods. There’s no physiological need to have them.
I am sorry, Did I miss you posting? ( it said third attempt) anyhow…
Yes, I had test to show I had gall stones, and had to get it out.
I am not sure I rememeber what difinitive test thet gave me to diagnois SOD, but I had so many….and I did see a specialist in Milwaukee who did confirm that is what I have. I also had rasied ensyemes every test I ever took….especially after an attack, my liver enzymes would go off the charts. I had a Manometry, and I also got a mild case of pancreatitis, so I know you say you are not convinnced I have SOD, but I sadly, I have it. I wish I didn’t.
I never got relief from a ERCP, the stenting seemed to be ok, but really the only relief I ever got was when I went on Amityptaline, at a very low dose ( .10) before that I tried Ursidol, Hycyomine and those did nothing….
I have never asked about Baclofen ( what is it)?
I can not take the pill, any hormones freak out my “area” completly, I have been off the pill for years. I could not handle any hormones, hence the pain gets much worse when I get my period.
Thank you for trying…and for your ideas.
Hi De,
I cannot give you any answers but I can share my experience with you that I have had and maybe that might help you. First of all you are definetly not alone. I know that sometimes it feels like it but there are alot of people out there with the same “issues”. That’s why this site is so great. I have been dealing with this for 9 years now. I have had 6 ERCP’s and I just had my second stent put in. This Dr I have now is doing progressive stenting..putting a small one in for 3 months, then a larger one in for 3 more months, and so on for a year. I have had the sphincter cut 3 times then the first stent put in on the 3rd time. I have also been wondering about the scar tissue building up and causing more damage but I asked my GI dr how many times you can cut it without scar tissue and he just said you can cut it as many times as you need to. So I am going back in March for this stent to come out and a larger one put in for 3 more months, He said if this doesn’t work then he will refer me to a surgeon and he will just “fillet it open” were his words. I believe that is called a sphinterplasty?
I told my old GI dr that my pain always got worse when I was having my menstrual cycle and he said that although he hadn’t heard of that it is very possible because hormones affect alot of things in our body. He also said that stress definetly plays a part in this also. That is why I have decided to change my job to a less stressful one and take a huge decrease in pay but I feel like I need to take care of my health.
I’m not sure what you have tried as far as medicine? Have you tried Levsin (hyoscamine)? That really worked well for me but gave me a headache which I will take any day over the pain. There are several smooth muscle relaxers out there to try. What have you tried?
Karen:
Thank you for your kind reply, I so appreciate it!
I have never heard of the small stent and then the larger one, you poor thing, it just sucks! every time I have a procedure, and I have twighlight or anything to put me out, I have an attack when I come to ( weird, right)?? The muscle just goes crazy!
I wish you luck ( please send me your email, so we can keep in touch < I would love to check in with you after your procdure.
The fillet thing…scary, I think that is what they wanted to do to me 4 years ago before I went on amitryptaline…I am sure you are nervous about it…I would like to know more about it.
My gynecologist said it is very possible to have extra pain ( also because of the hormones)…
Good for you to be brave and change your job, it must have been very difficult.
I have tried hyoscamine, and it really did nothing for me. I have not used muscle relaxors besides what I am on? Do you know what else works?
Thanks so much
Dede
This is Kris. I don’t think we’ve communicated before. I’m hoping that you would be willing to send me your email addresses to : krisl1204@yahoo.com. I’ll look forward to hearing from both of you!
I am driving 12 hours to see Dr. Cotton is Charleston, South Carolina in 2 weeks. First he is doing a MRCP depending what he finds or don’t find he may do an ERCP the next day. I have had an ERCP 3 years ago and it did not help. My pain is somewhat being control by medicine. I just hope whatever he does, it gets no worse than now. I would like to be told if I still have SOD or is this something else. The other Drs. says it’s something else, so what then?
Hi De,
Cymbalta is working for me 100% after 2 spincterotomies (minor & major papilla). It also took away my migraines and my Fibromyalgia along with neuropathy. Now I went on it because I found out that clinical trials had started on this for SOD. No GI will prescribe this for you, so you have to go to your regular doc.(It helps if you have one of the aforementioned issues or depression, because right now that’s all its lisenced to treat. Now don’t kid yourself, this “magic bullet” comes jam packed with a host of risks, but in my case, it cleared out a whole medice cabinet and that’s a lot less toll on my liver. So, the choice is yours, if after your research, you decide to give this a try, & you don’t have any of the other afflictions, come down w/ depression suddenly . . . .real fast !
Nymphaea
My GI Dr. in Baltimore mention Cymbalta a few years back. Might have to become a little depressed, which I think he thought I was. This SOD will make you be depressed!
There’s a lot of Docs who think SOD – especially type 111 is psychosomatic – and studies showing increased somatization in type 111 don’t help – giving docs an excuse to write off failures as nut cases.
I came across an older study where the doc was saying peptic ulcers were all psychosomatic, and pointed to things like reduced pain under sedation to prove it was ll in the mind and he said much the same about SOD and hyperkinetic GB.
Of course later research found it was helicobacter and this guy now looks like an idiot but the mind set is still there.
I’m glad cymbalta works so well for some – for me all SSRIs are a complete disaster and this is the case for most IBS D sufferers as well. This is clearly a complex issue with no clear solution.
Too funny!
Well, I will ask my doctor who I am seeing in a few weeks about Cymbalta ( I am one of those people who has a relaly hard time with medicine and it’s effects).
I do not have nay of those conditions, but I would try almost anything on the bad days!
What clinical trials? Can I read about it?
Thanks
It’s Kris. I found your email address from an older post on this blog. I just sent you an email to that address from my gmail email address. Please let me know if you receive it. I’ll look forward to hearing from you!
Yes Brett, I had elevated enzymes when I still had my gallbladder. That’s when the Dr. who removed my gallbadder thought I had SOD. He then sent me to a GI, who then said I would have to go to the “City”, because he would not touch me if it was SOD. I went to a GI at University of Md and he did a ERCP and manometry. He said my presure was so high, he did the test twice. He is also the same Doc who say that this might not work, that is doesn’t work in some patients. Worked for a few weeks, then more pain. I called him and he said it couldn’t be SOD because he fixed that problem. Then I really felt crazy, alone and hopeless. This Was the same guy who told me IT MIGHT NOT WORK! Did he forget he told me this?? I didn’t. Since then, 3 years ago, I have been to many Drs. who say, they don’t know what my problem is. I go to a pain management Dr. and I’m on Nortripyline, Tramadol and Levsin. Still have pain everyday, be I can live like this, not the other way and never want to live like that again.
If you have elevated enzymes the research seems to show you have a good chance of success with sphincterotomy. So if it doesn’t work for you that’s very bad luck.
I’m not sure as to why. DR Toulli did mention that there are some cases that don’t respond to sphincterotomy but didn’t elaborate as to why, only that their may be a way to tell.
It seems some doc believe that elevated pressures in type 111 on manometry are a marker for a general motility disorder with all the sphincters, gut and GB. But typically these patients don’t have elevated enzymes.
If I had to guess here I’d say the problems in cases with elevated enzymes that fail to respond was with the pancreatic sphincter or both and they cut the SO only. Though my doc here says if done properly, cutting the SO releases the pressure on the pancreatic duct???
I keep coming back to a trial of botox before cutting but 2 Docs now have told me it has a high rate of pancreatitus – yet the research articles I have say the opposite???
My Doc seems to think progressive stenting is the best option for reclosing SO. Some research I have suggests a risk of ductal scarring. The open sphincteroplasty is a possibility but it’s not a fun proceedure. I hear you’re on an intravenous feed for 8 days afterward.
Forgive me Brett – I don’t remember – have you had elevated enzymes? My doctor has thought about motility disorder in my case, partly because of reaction to hot/cold and because of large amounts of fluid in stomach on endoscopy. Do you have other indications?
What are the criteria for small bowel IBS/disorder?
Question for you and anyone who happens to read this – do you ever get similar pain to the URQ on the left? Lately, after prolonged periods of attacks, my right side gets to the point where it feels like I have been punched in the ribs. Last night that feeling developed on the left side (and I had brief stabbing pains in the ULQ late last week and was left with the general “ick” feeling there too). If you or anyone else has experienced this or has any thoughts, I would love to hear about it. As far as I know to date, I don’t have pancreatic issues.
No Michele – no elevated enzymes or any positive test really. (Unless you count divisum, diverticuli and hiatus hernia)
I get a lot of gurgling and contraction after eating and pain on deep pressure in a wide variety of areas.
The typical pain – and the one that seem to reproduce my symptoms is central and about an inch or two down from the sternum. The gall bladder is further right than this but the cystic duct is about here.
Problem is when it’s acting up I cal feel a lump and roll over it – it hurts when I hit the lump only. The lump can extend to the left side a bit as well. I also get similar painful lumps elsewhere lower.
Given the flares with fiber etc this seem more suggestive of a motility disorder to me. But all the IBS meds, antibiotics and diets don’t work at all.
Here’s some recent stuff I found on motility disorders:
Drugs such as benzodiazepines, lithium salts, laxatives, and codeine cause secondary stypsis. The latter can produce narcotic bowel syndrome, which is usually observed in patients who abuse opiates for chronic pain.
IBS, the more commonly diagnosed disorder of intestinal motility, has been considered a disease of the colon for decades, but research on GI motility has demonstrated that underlying motility disturbances can occur in the small bowel.
Thanks, Brett. For what it’s worth, I get that same pain that you describe in the center, and come to think of it I may have felt something like a lump from time to time. I also occasionally have had pain in the LRQ that somehow seems related. Of course, I also get URQ pain that can be right central or more off to the side. Now, as I’ve posted above, I am dealing with bad ULQ pain that goes to the back – last night I was unable to lay either on my back or my left side. I sound like a full-on train wreck!
I believe you can get SOD symptoms as far left as center, so maybe that is indeed what you are experiencing. I have been told that SOD pain to the left is atypical, but as we know, that all can be subject to differing interpretations, or SOD can lead to other issues/complications that could present in the left.
When I began this long journey, I did have IBS symptoms as well, which probiotics and a round of GI tract targeted antibiotics cleared up nicely. That is part of the reason I think I still have something else entirely going on – the “something else” that the meds did not help. I suspect you do as well, as you have not responded to those meds.
Is it possible that hiatal hernia could be causing some of the symptoms? Have you tried treatment for that? Honestly, I am not sure what treatment there is besides smaller, more frequent meals, and I think you are way past something that simple …
I know nothing about sphincteroplasty, do you ever have a painfree life. I haven’t had blood work done in a while. I do remember a few years back I had an attack and went to the ER. They did blood work and the Dr. said my enzymes where only elevated very little. I give up. I just know a few weeks ago I tried to come off of my Nortripyaline, because of weight gain. My general Dr. help wean me off. I got down to 10mg and remembered how bad the pain was without all my meds. I won’t try that any time soon.
Hi Robin! I did send a reply through the email notification of the posts I received, but it doesn’t seem to have posted. Anyway, my brother had a sphincteroplasty about 8 years ago after having an acute pancreatitis attack that resulted in a pseudocyst that was the size of a basketball. They did the sphincteroplasty on him vs. the standard ERCP because in spite of using a longer ensdoscope, they couldn’t reach his ducts due to his long torso. Ultimately, he has fared better than the rest of us in terms of not having daily pain. He does have flare-ups, but none that have landed him in the hospital for over 6 years. He is able to control all of this primarily through diet. Like me, he also has pancreas divisum. Maybe the sphincteroplasty is the ultimate, even though Brett is right about the difficult recovery. I will definitely be asking the question of Dr. Freeman when I see him for my ERCP on the 16th, as I don’t understand the difference in the procedures. My belief was that the net results was the same, just another way of addressing it. Hang in there!
There’s quite a big difference between sphincterotomy and sphicteroplasty.
In the – otomy – the just use an electro cautery wire on an endoscope to cut through the sphincter and burn at the same time to prevent bleeding. Mt doc tells me they think the heat might be an issue in re-closure and pancreatitis but it’s crucial to stop bleeding – and even then they sometime need injections .
In the – plasty – they open you right up and cut through the duodenum to access the ampulla (It’s inside the duodenem attached to the wall). If I recall the sphincter is completely resected and the duct is externalized though a new opening. I’m not sure if the pancreatic duct is also involved but I can’t see a way to avoid it with this procedure. There was a diagram of how it was done on the John Hopkins web site but I’ve lost it.
Thank you so much for clarifying the difference! I really thought the net result was the same, just a different method of getting there. Now I wonder what determines the decision to do the sphinteroplasty vs, the sphincterotomy?
Sphincterotomy is the procedure of choice these days because you don’t need to be opened up and spend days on an IV feed.
It has pretty much replaced sphincteroplasty. Depending on where you read though the plasty does seem to have a higher success rate and a much lower chance of closure.
They tend to use sphincteroplasty now when sphincterotomy leads to continued reclosure though my doc believes serial stenting is preferable.
Thanks for infor, Kris. At this point I’ll glad to be truly diagnosed with something. I can’t believe this is going on 4 years now. Every day of life pain, some days worse then other lke last week when I ate granola. In the mornings I feel almost normal, but around 10 or 11am the pain begans for me.If not for this SOD support group I would have lost my mind by now. I’m just a regular woman, been working at an Elem school for 26 years. Always been active and in shape. I have gain about 40lbs or so after on Elavil, now I take Nortripyaline. I just hope one day soon I can go off this medicine. I am thankful for it. At least I can go to work and do everyday things, not like I used to, but somewhat.
It breaks my heart to hear comments like this because it’s the same for all of us! Mine began about 3 years ago. Like you, I’m pretty good in the am. until the same time, around 10:00 or 11:00 when the pain sets in. I also cannot eat high fiber foods like granola. I had brown rice a couple of months ago and I’ll never do that again. Raw fruits and vegetables, wheat bread and processed foods are my other no-no’s. Does the Nortriptyline help? I tried it once on this journey and it did nothing. Neither has Neurontin. I’ve been fortunate enough to not gain weight from the medications. I’ve lost weight because I don’t eat much. That has been a welcome side effect, as I could lose 10 more lbs! I used to be much more active as well. I know find strenuous exercise to be another trigger for increased pain.
Would you mind sending me a private email @ krisl1204@yahoo.com? I’d love to hear from you!
It’s good to read your case Robin. It sounds like you have very definite signs of SOD with elevated enzymes and you get worse with fiber/granola raw fruit etc. Do you get diarrhea as well?
One of my doc thinks the worsening with fiber is a definite sign it’s not SOD. Reading you reports and others I’m not so sure now.
Kris, I tried twice to send you a Email I’ll do it here. The Dr. who did my ERCP put me on Elavil 25mg after my pain came back. I have been up to 75mg, but did not feel like myself, too speedy. After many different Dr. I was sent to a pain management Dr. She switched my Elavil to Nortripyline because of weight gain, still haven’t lost the weight. She also put me on 50mg of Tramadol, and Levsin to stop the heart attack like pains I have, spasms. I’m suppose to take the Tramadol every 6hr. Some days I take 1-3 all day depending on the pain. My daughter is a RN and says I should take it every 6hr even if I don’t have pain to keep the pain from coming. I just don’t want to get so depended on meds. I take the Levsin in the morning before I eat. Again I’m suppose to take it 4 times a day, before meals and at bedtime, but only take it once. If I don’t take it, I feel like something move under me breast area. If I eat hotdogs it moves a little, meds or not. Raw veg and some fruits hurt also. One day I was at the mall and drank a tropical smoothie and was in pain bad. Just taking about this stuff helps, Thanks for asking questions, Robin
Hi Robin! I wonder why it didn’t go through. I’ll put it in here again. krisl1204@yahoo.com. Oh, the dreaded hotdogs! I can’t eat them, either! I know others have had problems with really cold beverages, as I did once. I’ve tried the Levsin, but it didn’t really seem to do much. Unfortunately, not much does seem to help. Having the support of everyone here does!
Margie, I think it can but I think if you are asking this question you should go to the ER!! Don’t mess around with this. If it’s nothing related to your heart, let the medical team tell you that. Really, if you have any concern about chest pain, go straight to the ER.
Don’t worry. I’m fine. Not having that now. I’ve been evaluated up one side and down the other (twice on all heart tests). I’m just curious if oddi is related to angina in any way. All started around the same time. I saw Robin mention heart attack type pain and was just curious.
I think a lot of GI disorders can manifest with chest pain. Would not be surprised if SOD were one of them. Sorry I can’ t be of more help on that one, but I am glad you are OK.
Hi Robin:
I am on Amitriptalyne and feel like it made me gain weight too…I was hoping there was something out there that would not effec me that way ( so, you see no weight loss on Nortiptyline)?? I think they were talking about switching me, but do you think you gained weight on that? ugh, so frustrating!!
I too feel like i am having a heart attack when the pain comes, and for some reason it come son super fast and super strong.
What is Tramadol ( I guess I could google it, but I am trying to figure out all the meds people take and how doctors decide what is right for ech of us)..
Thanks
Dede
I still don’t know what those spasms are about. I do know I don’t have them when on Levsin. I really thought I was dieing. One night I was in bed and it started and my husband ran and got one of the Levsin and it stopped. It’s the worse pain I even had in my life. The first time it happened I went to the ER. The only thing showed up in bloodwork was enzymes were a very little elevated. I hope to find out more about all this when I go to the specialist in SC on the 16th.
That is interesting. My cardiologist said that the spasms of IBS, oddi, and angina are all related. You were the first person I saw mention the pain, so I was curious if anyone knew more about it. Thanks for sharing that.
Wow, I never heard of those things being related. After I had 2 of the attacks, I did go see a cardiologist and had a stress test, which was fine. The first one I had, I just knew I was gone. My pain management Dr thought it was angina, heart Dr said no.
I never heard of it either, so I wondered if anyone knew anything about it. The philosophy is that if you have a spasm problem in one area, it is not out of the realm to consider you would have spasms in other areas. I thought it was interesting but never have seen anything about it.
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.
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I had bladder suregery 6 months ago to remove defective bladder mesh and a few weeks after the very difficult surgery I started having pain and constant pressure with the urge to void and I do void about 3 or 4 times an hour,going out anywher is miserable after a short while it hurts where my bladder is.I am feeling like a 90 year old woman,I am post menapausal but only mid 40’s,not on ERT,could any of this be related to that or does it sound like a bladder disorder.Any advice is so appreciated
Well here we go again , thought the pain was getting better but it
is back , feels like a gallbladder attack ,shouldnt have drank that coke i suppose , heck i dont know what to think anymore it has been 2 weeks of pain ,how long can this last.this burning hollow
pain wher my gallbladder was is driving me nuts!
Hi Shawn!
I know how this pain can drive you nuts. I wish there were an answer about how long it can last. This condition seems to have a mind of its own. Where do you live? We can try to help you find a doctor in your area that understands these issues.
I hope you’re having a better day today. Take care!
Kris
Hello Everybody !
First of all Melea, please teach me what “Smoldering” pancreatitis is. This is a new one on me. Hope you get taken care of soon so you can get back to a normal life !
I have some news for the other SOD’ers. I did some research and there is a Clinical study of Cymbalta going on now for SOD. Now Cymbalta is being used for Fibromyalgia, Migraine Prevention, and Nueropathies. All of which I have. And the 600mg of Nuerontin (which I got down to from 1200mg) for my SOD + 1/2 a Zoloft(to prevent migraines) was working, but was knocking me out, into such a deep sleep, I could barely open my eyes after 9 hours ! So, I asked my regular doc if I could do a trial. and kill many birds with one stone. He said sure.
My nuero agreed. Although I’m not sure if I can stay on it, because its only day 3 and I’ve had 2 serious migranes (which could be totally unrelated as the drug should take a couple weeks to kick in). What I have to tell you is this morning, I accidently forgot to take my enzymes & Ursodial w/ breakfast and well nothing hurt afterward. Its a start !
Hi Nymphaea!
I just wanted to check in and see how you’re doing. Hopefully, feeling a little better! I’m having an endoscopic ultrasound tomorrow along with a pancreatic function test. I should know something from the EUS tomorrow, such as whether or not there are any pancreatic changes from the one I had a year ago. Let us know how you are!
Kris
Kris
Kris,
Sending good vibes your way today! Hope everything goes well for you. Please let us know how you’re doing. I am thinking of you today.
Karen
Hi Nymphaea.
How is the Cymbalta working. I am on Citlopram and considering switching if you have good luck with Cymbalta.
Hello Shelly,
No problem with the Cymbalta, not even a side effect ! And although my body just got over 2 more simultaneous infections and I got very wiped out from the antibiotics, I’m stronger feeling good now and had a great weekend w/ my daughter celebrating her 21st birthday and the holidays early, as she has a lot of people on her list to visit in this 2 week period.
Last night, we had a Blizzard here in NYC. I was like a normal person and we walked around the corner to our local bar/ restaurant and had an Amstel light, giant glass of water, some Jalapeno poppers and chicken fajitas w/ fried onions & peppers. OMG did I just break the cardinal rule and use the “F” word ? On this site ? How dare I ??? Guys, I did take enzymes w/ dinner just to be on the safe side, but I haven’t needed them all week ! What can I say ? Cymbalta also prevented all but 1″Time of the month” migraine & my usual blizzard joint pain as well !
Me, the one who is allergic to like everything has no problem w/ this stuff and is feeling good ! I can only hope the same for all of you, as the holidays approach, so does hope. I wish it all for you.
Melea, now that you know your enemy, the fight is on. You will win !
I’m glad all of your biopsies, and procedures seem done b4 the holidays and I wish all of you sucess in your various fights. Been very busy treating car accident trauma patients all week and this will be the bulk of my work into the new year. Thank you all for your support and lessons. So much to learn !
Nymphaea
Hi Nymphaea!
Your old fashioned blizzard sounds like a blast! I would love to experience that in NYC. in Minneapolis, we have them, but it’s not like being a city resident and being able to walk around the corner to go out for dinner. We just hunker down at home and ride it out! I’m so happy to that you’re feeling better. I had my EUS and the PFT on Thursday of last week. The EUS didn’t show signs of chronic pancreatitis. The dr. who perfomred it said my issues are probably SOD. You know. That 3 letter 4 letter word! I hope you have a wonderful holiday week and continue to feel well. I’ll look forward to hearing from you again!
Kris
I probably won’t be writing for a while. We lost my sis in law yesterday and my brother and the 5 children are severely traumatized by her violent sudden passing. Preliminary autopsy shows a missed heart defect. She was 40. The shock was a terrible blow to us all, but especially the children. Bless you all during the holidays.
Well dr freeman threw a stent in the pancreatic duct and I am not feeling better. Actually the upper left quad of the ab hurts more than when I came in last Monday. I have not seen the dr about the pain pump yet. They want me to have a neuro consult before which I guess makes sense but makes me feel a little like they think I’m crazy (I think they have caused all of us to feel that way at least one point). The neuro person that dr carter wants me to see was gone last week and I haven’t heard anything else. I have also been told they are going to do xrays on ab just cause my tummy got really distented overnight.
Hi Melea! I’m guessing you’re still in the hospital? I’m sorry that the stent has made things even worse. I don’t think they think you’re crazy at all! I’m willing to bet having patients see a neuro before they implant the pain pump is part of the standard procedure they follow before doing it. Implanting something in your body is a big deal and I’m sure they want to make sure that you’re really ok with it. I hope you have a better day today. Please let us know how everything is going.
Take Care!
Kris
So i am still in the hospital, lipase still up. But they have decided to run lots of labs and such. They have started checking for a rare thing called amyloidosis so far my urine has come back positive. Dr freeman saw the labs and all he could say for about an hr was “holy shit!” Turns out this is super rare and he has bummed his schedule for tomorrow, sorry if you are being moved but he is going in for biopsies to confirm. The treatment is chemo, marrow transplant and meds such as steriods and such. This could be an interesting road. . .
Oh, Melea! I am so sorry that you are going through so much. i am glad Dr. Freeman is bumping his schedule for you. Dr. Freeman isn’t doing my procedures. One is Dr. Ammat, I think. I believe he is a Radiologist. The other is a pediatric GI dr. Do you know where you will be having the biopsy? I’ll be in the Endoscopy Center in 3C. I wish I could stop by and see you, but I’m sure you’ll be in no shape for visitors. I am praying for you and hope you get some answers! Take care, honey!
Kris
Kris,
i dont know where in the hospital they will be doing the biopsies but I have my own room (room 512, floor 6d). You are more than welcome to come! And they came in this morning and said I’m on the schedule today but no one seems to have a set time for me. I guess I’m stuck here either way so it doesn’t matter much. ;P
I hope all your procedures go well and without trouble!
Melea, I wish I had remember you were there on Monday, I would have came and seen you. I had my MRI done and than seen Dr. Freeman at 3:20. I am really sorry you are having such a hard time. You are in good hands though. Kris, is there waiting to have her test done, she just text me and wanted me to let you know that she will see how she feels after she is done, and if she isn’t to loopy she will come see you.
I’m sad I didn’t get to see you but I understand how out of it they can make you feel! I hope you get some answers!
Hi Melea!
I was supposed to have my tests done at 12:30, but didn’t go into until 1:30. They took 2 hours. By the time I got out of recovery, we didn’t leave the hospital until after 6:00. They made me be in a wheelchair when we left and took me straight to the car. I was pretty loopy. I also figured you were in having your biopsy done. The EUS didn’t show signs of chronic pancreatitis. Dr. Attam said the function test usually has the same result as the EUS. I’ll have to wait the 3 weeks or so to find out. Dr. Attam said it’s probably the SOD causing the issues. How are you doing after your biopsy? I’m praying for good answers for you!
Kris
Sorry to hear your procedure got pushed so far back. I was done with my biopsies by 230. I have taken a nap here and there, not much else to do in the hospital. There was a bit of a communication error on the drs part that upset me a bit but its over.
How are you feeling now? Are you heading to work tomorrow or going to take the extra day as a weekend?
Hi Melea!
I couldn’t reply to your post, so I hope you find this. I’m feeling ok. Worn out and in some pain.How long do you have to wait for the biopsy result? Do you know how much longer you’ll be in the hospital? I am planning on going to work tomorrow. I’ll see how it goes. I may leave work early. If you’re still there on Saturday, I’ll try to come by later in the day to visit. Take care and keep us posted!
I am guessing it will take a week. . . I have no clue how much longer I’ll be here. I thought I would of been way gone by now, so that’s a tough question!
I hope work goes well tomorrow!
Dr freeman and pretty much every dr here is researching this tonight they have heard of this is med school but haven’t seen a case. The intern on my case came in with stacks of paper and said they are letting him leave to research more on this. It would be nice to have name for this instead of all the idiopathic problems.
Hope you all are well!
Melea,
I am praying the best for you..It has got to be a little scary for you when the dr’s say they have never seen a case of this! Sounds like you are in good hands though and hopefully on the right track. I will be thinking of you and praying for you.
Best of luck to you!
Karen
Melea,
I am so sorry you are having to go thru this. Could you tell me what kind of symptoms you have with amyloidosis.
Amyloidosis is where proteins build up in organs. For me it seems like its the gastrointestinal tract, this is rare, it normally builds up more in the heart and kidneys but the disease itself is very rare as well.
Symptoms for me are tingling in limbs, part of my body fall asleep very easy. Diarrhea and constipation which is so odd. One day I can go 10 plus times a day and others I can go two plus weeks without a bowel movement. Nausea, feeling full quickly, severe fatigue, protein in the urine.
Thanks for the support.
Melea,
So sorry to read about what you are going through. I know it is good to know what you are dealing with, but I bet it doesn’t feel all that great to be the rare exciting case there. Please keep us posted. I’m thinking of you!
Michele A.
Well I’m glad you finally got the problem nailed Melea. If I recall from my university days amyloidosis is hereditary and results from abnormal protein deposition (amyloids) in various tissues – they think it plays a role in Alzhiemers as well if I recall – but not from the same hereditary pathology. The good news is is not malignant, it’s treatable and you have a real chance of being out of pain – I’m delighted for you – all the best.
Seems I’ve had a similar breakthrough. I vaguely recalled somebody here saying they thought a high ejection fraction was as bad as a low one quite some time ago. I kind of dismissed it at the time but in it stayed in the the back of my mind. A week ago I suddenly recalled the Doc saying – oh your gall bladder is working well and the sphincter is not blocked at all – 96% was ejected in and hour – that’s excellent. I thought oh that’s good – at the time but my subconscious must have pick up on it.
So I looked it up further and a 96% ejection is crazy high and indicative of a very hyperkinetic gall bladder, anything over 70 is a problem – the doc was totally wrong – but quite a few doctors don’t seem to know this. (She was a liver transplant surgeon while really makes me wonder)
It’s almost always symptomatic with diarrhea and pain and almost always resolved with GB removal – so the prognosis is very good. The only thing I can’t figure is why the HIDA scan and the CCK didn’t flare it up when simple tings like wheat bran and opiates really do a number.
But I found some studies that show the effect of nitrates on GB size in people with hyperkinetic GB and it totally explains why this relieves the pain. I’m having a consultation with a surgeon next month.
What saddens me is just how difficult this is to diagnose and how many people are suffering unnecessarily. If I hadn’t been in the profession I would have never figured it out – and it took 30 years.
I can’t recall now who mentioned it but thank you so much!
There is a hereditary version but they are looking at mine as primary amyloidosis which happens to be to toughest kind.
Hi Melea!
Well, I intended on coming to visit you late this afternoon, but I ended up spending the day at Abbott hospital with my mom. She’s 83 and is having something called arterial fibrillation, which means her heart isn’t beating properly. They did admit her and are running more tests. I’ll be going back there tomorrow. She’s doing OK and it is something that they can correct.
I’m sorry that they’ve found that you have the toughest kind of this disease . We know your in good hands with your doctors! How are you doing? Are you still in the hospital? I’m thinking about you!
Take care!
Kris
Hi Brett!
It’s good to hear from you! Interesting findings. I need to go and pull my reports. My first thought is that I also had a high ejection rate in my HIDA scan. I’ll find the reports and let you know what they show. Please keep us posted after your next appointment and update us on what the surgeon thinks. I know for me personally that high fiver foods such as wheat bran send me into orbit. I don’t have the same problem with opiates. I couldn’t survive without my pain meds every 3-4 hours. It is amazing how differently this affects all of us. I was with my brother today, who I’ve posted about before. He is SOD I and had a severe attack of acute pancreatitis a few years back.. We both had a salad and soup for lunch together. He was fine, but the salad sent me into a huge pain cycle. I just can’t eat raw vegetables and other high fiber foods that he can. We were at the ER with our mom, who was having heart rate problems. I made it through without having to check myself into the same ER.:)
Kris
For Karen
Hi Karen!
I’ve been thinking about you and am wondering how you’re doing. Hopefully, well! If you’d like, please email me @ krisl1204@yahoo.com. I’d love to hear from you!
Kris
Hi Kris,
I am so sorry you are having troubles with your Mom. My dad has also been in and out of the hospital lately. 3 times in the past 2 months due to v-fib which is a dangerous heart rythm. They have had to schock him back into a normal rythm each time. He was in the hospital the same time I was in with my last ERCP! Different hospitals though. It was kind of funny..we were calling each other from our hospital rooms! It is very stressful having to deal with your parents being sick on top of our problems! I have been doing ok. I just took myself off of my oxycontin cold turkey so I am feeling pretty bad now. I am still taking the percocet so I am getting by. I just can’t stand the sweating that the oxycontin causes. It is horrible. So hopefully I can get an emergency visit today with my pain management dr to discuss what to do next. I am hoping I can get off of these pain meds eventually. I know that is a very dangerous way to do it ..cold turkey like that but I am still taking the percocet so I didn’t stop everything cold turkey. I am thinking maybe I can try oxycodone instead..it just isn’t the long acting like the oxycontin is. Are you on the oxycodone Kris? I can’t remember what you were taking? Are you still doing the Flector patch. I am not since it was 100.00 per month after my insurance and I didn’t think it helped that much.
I also just got word that my youngest child (son) will be deployed again on Jan. 2nd to probably Afganistan this time. He went to Kuwait last time so I am trying to deal with that also.
All in all, I have been doing well. I don’t have the intense pain at night that I was having before the stent so hopefully that will continue to improve.
I was able to go see the Nutcracker on Sat and absolutely loved it! That was my first opera and it was pure magic! I was worried about sitting through it but it was fine. I hope things improve with you and your mother.
Please let me know how you’re doing. Can you remind me what meds you are taking? I appreciate all your information as I think we are very similiar in our disease. Thanks for thinking about me!
Love , Karen
Hi Karen! It’s so good to hear from you! My mom is home and is doing better after also being “shocked” back into the normal heart rhythm. That’s crazy that you and your dad were both in different hospitals at the same time. I hope he continues to do better. It is really hard to deal with our own issues and those of our parents at the same time.
I worry about you going off the meds like that. It is hard on our bodies to do that. I went off of my pain meds in late May after my gall bladder surgery. I didn’t do it cold turkey. I worked with the pain clinic to reduce my dosage and ultimately, quit taking them. It was about a week later that I ended up in the hospital for 3 days. It wasn’t because of the symptoms of quitting. They told me I couldn’t go off of pain meds because of the SOD issues and the adhesions that I have. They said they were both so painful that I would just end up back in the hospital if I didn’t take them. I quite fighting it then and have been on oxycodone since September. That’s when I started at the Palliative Care Center that I’m at now. Before then, I was taking 4 Percocet a day, which wasn’t enough. I now take 2 of the oxycodone every 3-4 hours. If I don’t, the pain gets so intense, it reminds me that it is time for another dose. I’m not using the Flector patch any more, either. My insurance won’t pay for it any more. Like you, it really didn’t help all that much. I started it the same time I started on the oxycodone. I guess I was hopeful that the patch was the greatest contributing factor to the pain relief, but it wasn’t. Please, please be careful about how you wean yourself off of these meds. I’ve also learned to accept that my body needs the pain relief just like a diabetic needs insulin, so I’ve stopped judging myself for taking them. I don’t abuse them at all. In fact, I take less than what is prescribed daily. Just please be careful and good to yourself!
I’m sorry about your son’s deployment. That’s a very stressful thing to have to be concerned about. I will be praying that he is safe.
I’m happy to hear that you are a bit better. Again, please be careful and gentle with yourself. I wish you and your family the best of the holidays. Please continue to stay in touch and let us know how you are. Email me anytime!
Love,
Kris
After my visit on Monday, I requested my report from the doctor, and I wanted to share this with everyone. It said I have intractable pain. Well I looked it up and found this website that relates to all of us in some form. http://WWW.INTRACTABLEPAINDISEASE.COM I was put on pancreatic enzymes and another immune supplement. Dr. Freeman said that out of all of the test that say you have chronic pancreatitis, the only one that isn’t normal for me is the function test that showed the insufficiancy and low bicarbonits.
Sorry to hear your kind of amyloidosis is the most difficult Melea. I only got the basics on it and University and that was quite awhile ago. Seems though if it’s not hereditary ad genetic you might have a better chance of treating it?
I have trouble believing the gall bladder can be a problem but give no pain from a HIDA scan with CCK – which stimulates full contraction. My feeling is it might be an associated problem but not the main cause. Much as I’d love it to be the GB I try to control wishful thinking that runs against the evidence. But all the literature so far says 96% is a real issue so I’ll keep looking in that direction and let you guys know.
On thing I found that may be worthwhile passing on is: I was taking a generic version of gabapentin/neurontin and up to 600mg a day without much help. I had some old samples of Lyrica 75mg I thought I’d try when the neurontin ran out.
The difference is enormous. Just 75 mg of Lyrica made me quite drowsy and relieved the pain way more than gabapentin. There must be a considerable difference in the mechanism of action.
Hi Brett – been meaning to reply to your posts since you started investigating the the too high ejection fraction as a potential issue. Two thoughts from someone with no medical training – (1) could it be that someone with very high ejection fraction just does not have the same adverse reaction to CCK (versus low ejection fraction from sluggish GB)?; and (2) if high ejection fraction indeed is a problem, is there medical evidence to back up taking it out as the treatment? I wonder if an overactive GB would respond to some sort of medical therapy. Also, like you, I wonder if high ejection in the GB points towards another cause besides GB being inflammed – in which case maybe you can keep it. I had thought that the inflammation was the main reason doctors opt to remove GB because the inflammation itself creates the risk of complications. Sounds like maybe yours isn’t inflammed/getting in the way of other processes, so maybe you won’t have to do that. I would love for you to find proof that this would work, get it out and feel great (and totally understand sort of wanting everything to point to that), but would be even better if this could lead you to the root of your problem without having to go through a surgery. I am guessing I am not adding any new thoughts here, but just in case I wanted to weigh in.
Michele A.
Thanks Michele,
I did some more research and it’s making more sense now – well at least this is my theory. Morphine causes all the sphincters to contract (this is unequivocal and well proven) CCK causes them to relax and the GB to contract – (also unequivocal).
So if you have a high ejection fraction it doesn’t take much sphincter contraction to cause pain. You’re pushing a lot of liquid through a small duct and fluid dynamics say that more volume pushed through a small opening causes back up.
So morpine causes severe exacerbation because it contracts the SO. But the CCK alone causes the spinncter to relax and the GB contract – so CCK is no problem in itself.
I’ve tried the meds they recommend to relax the GB – most are smooth muscle relaxants like atropine, hyoscamine etc and antimuscinarics or anticholenergics, none help much but there are some studies that show they increase GB size – indicating relaxation.
The also recommend calcium channel blocker like nifidipine. I recently tried mebeverine (colofax) these didn’t help either. But the sub lingual nitrate is a big help – so it seems I need a pretty strong muscle relaxant to get much effect.
I have one study where they found 99% of those with ejection fractions over 80% had GB inflammation on histopathology.
I’m getting so much benefit now from just 75mg of lyrica I think I can function again. I’m still seeing the specialist about possible GB removal though. I want the capsule endoscopy as well to rule out other small bowel diverticulum – but here it cost $1000 and is not covered under insurance.
Hi Brett -
I’m wondering if you are still thinking your problem is IBS alone? It seems like you have something more going on but of course I don’t have the medical training you have and it’s also your very own body we’re talking about
There is much talk on the ejection fractions and so I assume this is referring to the HIDA scan? I’ve never had this procedure since Dr. Freeman told me it is not necessary for those diagnosed with Papillary Stenosis/Biliary I/SOD I in which I have documented elevated pancreatic & liver enzymes as well as a
dilated cbd.
It is great that you are seeing much improvement from the Lyrica but I also can see why you/they may still want to remove your gallbladder. After all, the statistics show just a 20% or less chance of ending up with post-chole syndrome. Also it appears to occur less in men than it does women.
Statistics to me though are more like a crap shoot because I always seem to
wind up on the unlikely ( or rather unLUCKY ) Ha! side of a bad occurrence such as that found with post-ERCP acute pancreatitis occurring in just 1% of the population in 2002 (when I had my 1st ercp ) and that has gone up to more like a 5-10% occurrence in post-ERCP acute pancreatitis.
I don’t come here very often since I am feeling much better since my ercp w/sphincterotomy last February but I am glad you are still posting here and keeping us informed as to how you are doing, as well as educating us.
Best to you & Happy Holidays,
Cristie / Gracie
Thanks Gracie,
I seriously doubt it’s IBS alone in my case – even though it’s the diagnosis of convenience for most docs. I know what the pain of IBS is like and do get the cramps on occasion it’s a sharp pain that can double you over .
But the pain is very minor by comparison to the deep nausea and waves of pain that make you sweat . I can understand why the IBS sufferers think it’s bad. They just don’t have the much worse pain of SO/GB sufferers to compare it to.
Yes the HIDA or DIDA scan is th only way to assess GB ejection fraction. There’s a lot of studies showing it’s of limited value and not predictive at all of the success of GB removal – but it does have it’s applications.
The chance of post choli syndrome is well under 10% for males – closer to 1% and the success rate of GB removal in high ejection fraction studies was closer to 99% – admittedly the test number was small – 30 patients.
Dr Freeman is dead right IMHO. If you have evidence of papillary stenosis (enzymes or dilated ducts) – why do a test that has a very low predictive value that will almost certainly show a low ejection fraction due to the stenosis? In fact they don’t even recommend manometry for you – type 1.
The numbers for post ERCP pancreatitis are actually much higher than the general studies indicate. In noraml populations it quite low. I had prolonged studies of both pancreatic duct – (I have 2) – with manometry – and not a trace of pancreatitus. SOD patients are MUCH higher risk, being female, under 50 etc all increases the risk.
So if your in the high risk category – SOD especially – your risk is closer to 30%. But seem to be lowered with the right technique – duct stenting etc.
I’m so glad you’re doing better and the procedure worked for you. Type 1 patients can expect a high rate of success with sphincetrotomy and you’re in the best hands.
Brett
Brett I’m so happy that you are getting relief from the Lyrica. That is great! I was taking 75mg twice daily and it made my hands swell real bad so I quit taking it. Not to mention weight gain which I definately do not need!
My MRI showed nothing, so why does this SOD make my back feel like it’s breaking.
I’m not aware of your full story Robin so take this advice under advisement.
It is possible for thoracic spine pain to refer to the anterior chest and abdominal region. Just as it’s possible for GB pain to refer to the back and right shoulder.
Unfortunately the human brain has a very good sensory map of the skin and you can usually tell quite accurately where you are being touched or irritated.
Once you get under the skin the map in the brain homunculus of the parietal lobe get a bit fuzzy and the neural network far less dense. You also get convergence and divergence of sensory fibers, cross over from one set of fibers to others etc so pain from he visceral region can manifest in other places, and other places refer pan to the viscera.
People with disc problems often get pain all down one leg and get misdiagnosed with sciatica when the sciatic nerve is not being compressed or irritated at all.
It make diagnosis remarkably difficult and it’s always a good idea to rule out musculoskeletal pain in abdominal pain syndromes – especially if the pain is in the back.
SOD and biliary pain can manifest itself in your back, directly behind where it’s located in the front. I don’t know why it travels. I’ve had it strongly in that area today myself.Today, I felt like there was a knife going through my gut, but that it was being”pinched” at the same time, particularly into my back. There just seems to be no rhyme or reason as to how this shows up and affects us. I hope you’re doing a little better tonight. Please let us know how you’re doing!
Take care!
Kris
Hope everyone has a wonderful Christmas! Hope we all are almost painfree for a few days.
Merry Christmas to you,too! It was not a pain fre day, but a tolerable one. I’ve learned to appreciate those. I hope yours was ok as well! Let us know how the day went.
Take care!
Kris
For Judi
I saw the negative post that someone put on here and your very appropriate reply. I’d like to take this opportunity to say THANK YOU for this blog. I have learned so much from eveyone sharing information. I’ve devoloped 2 great friendships with individuals that I’ve met on here and we now communicate daily. Without you, we wouldn’t have these friendships and the wonderful support that we are able to provide each other with. I wish you a very happy holiday season along with a healthy and prosperous 2010.
Kris
Hi Kris -
Merry Christmas and how are you feeling today ? Sorry I haven’t been keeping up but I’ve been so busy that I get on a website, post a few questions/answers and then
its off I go again – thank GOD my Christmas shopping is over.
Please let me know what’s going on with you, etc. when you can !
Best,
Hi Gracie!
It’s good to hear from you!I read on the other site that you haven’t been feeling well. I hope today is better! Merry Christmas to you and your family as well. I’ve had some good days and some tough days. This thing just has a mind of it’s own. I had an endoscopic ultrasound done on the 17th of Dec. along with a pancreatic function test. The EUS showed 2 of 9 signs for CP. The dr. said that was considered normal, as anyone off the streets would have one or two signs. I have to wait a couple more weeks for the results of the function test. The dr. said that the function tests are typically the same as the EUS. However, I know of another member who had both of them done about 6 weeks ago. She had a normal EUS, but the function test showed signs of insufficencies. I’ll wait to hear.
It’s been quite the Christmas snowstorm. I know you’ve been hit in Kansas as well. It is beautiful, though!
Let me know how you’re feeling. All the best for 2010!
Kris
Thank you so much, Kris. I really appreciate it. I’ve been keeping this blog for 7 years now. I never imagined this one post would have a life of its own and over 1,400 comments. Wow. You guys are so amazing and even though I don’t post much because my SOD is pretty much under control, I admire you guys so much.
I don’t know if anyone reads my more recent entries, but I’m considering moving my blog away from here and staying on Posterous where it is much easier to post/maintain. And cheaper too (free) vs. the $125/year I pay for this blog. I’m sure you noticed how slow the page is, and how hard it is to navigate. I don’t want to break this thread though, so I’ll be very careful about what I do. I just wanted to give you a heads up, though.
I wish you all nothing but health in the new year. And thanks again!
Dear Judy, I also want to thank you for letting all of us post on your blog….It has been a great help. I haven’t posted in a while but I have tried to keep up with what others were posting. I’m still dealing with my SOD…it is better than it was but not gone…and I recently had shoulder surgery (a week ago). Please let us know if we can contribute to the cost of this blog. Happy holidays to everyone here! -Laura
That’s really sweet, Laura. I appreciate it. Truth is, right now I don’t know for sure what I’m going to do with the blog. But I will definitely find a way to leave this thread intact no matter what, and I’m not making any changes for the foreseeable future.
Hi Judi,
I didn’t see your reply to that person but I bet it was good and I am glad you did it. I also want to thank you again for keeping this thread going. I have learned so much from this site alone and it’s my main (really my only) internet resource as I am going through the diagnosis stage. I’d also be happy to kick in to support this blog or anyplace else you transfer to.
I thought about you at Chanukah as I delicately tried to make myway around the latkes (I remember that you also have issues at YK…) Glad you are feeling well these days and I hope it stays that way! Thanks for providing this great resource.
Michele A.
Hi Laura!
I’m sorry you had to go through shoulder surgery. I had it done myself 3 years ago. Out of all of the surgeries I’ve had to have done, that one was by far the worst! I hope you’re doing ok.
Kris
Hi! First of all, I’m so happy to hear that your SOD is under control. My wish for all of us here is to reach that point in the coming new year. I can certainly understand your desire to move away from this with the associated cost. Like Laura and Michele, I would also be more than happy to contribute. I did see your other reply that you weren’t making any changes in the near future. Whichever direction you decide, I appreciate your willingness to keep this going. Again, please just let us know and we’ll help. As I said earlier, this has been the best information site and support that I have found. Through your site, I’ve made the 2 great friendships that I spoke about. I know they will become life long friendships and I am so grateful for them.
All the best!
Kris
Judi,
This site is wonderful. You are doing a fantastic service an easing the suffering for people trying to cope with one of the most painful disorders the human boy is capable of. I’ve learned a great deal here and for the most part everybody is wonderful.
I find you get negative posters on every forum. The best practice is to ignore them and they go away. What they need and thrive on is responses.
It would be nice if the computer came with an ignore button.
Brett
Hi Judy!
Did you remove the negative post from here? I did not see it but I also wanted to thank you so much for providing this blog for us all to learn more about this disease that is very uncommon and being able to share our stories with each other.
Also it is great to have a place to just come on here and vent … which I have done a time or two! If you need anything from us please let us know and I’m positive everyone on here would be glad to do anything we can to help you. Merry Christmas to you all!
Karen
Hey Brett, so glad you are doing well w/ Lyrica ! I am 19 days into Cymbalta and loving it. NO SOD to speak of. Have been eating anything I want. And LOOK MA. . . No migraines ! Well to be honest, I had 2, one serious 24 hr deal and one minor, 2 hours !
Thats a far cry from 8/month ! My fibromyalgia has been under good control except for the blizzard last week and this week w/ recent Severe Rain Storms & all my family stress.
Just thought you guys would like an update. Cymbalta is presently under Clinical Trial for SOD, but because I already had 3 other problems, it is approved for, I thought it was worth a try and 2 out of 3 of my Dr’s agreed.
I wish you all a New Year where you gain control of this problem in your lives, understand your individual causes and find your own breakthroughs !
Sincerely,
Nymphaea
I’m so happy that Cymbalta is working for you. How much are you taking? I asked my Dr. to ween me off of Nortrip. I’m still taking 40mg as of the last 2 weeks. At one time I was on 75mg. I’ve been on 25 mg for about a year. I want to go off of this because of weight gain. If my pain gets worse I would like to try Cymbalta. I think one time a Dr. told me something about it. I still take Tramadol and an anti spasm med. You really give me hope.
Hi Robin & Brett !
Happy New Year everyone ! I am taking 20mg Cymbalta,(the smallest amt.) Danny and I are in disbelief ! Look Ma . . . No migraines ? (after 20 years) Ordering anything I want at a restaurant ? (after 5 years) Having a snack of wine and chocolates ? Who’s life is this ? Hopefully all of you will be joining me soon ! I must add it was my own research that brought me to this Cymbalta conclusion and my GI was the only doctor against it, for the simple reason there is not enough research yet. I just advise one thing, if you are considering this trial yourself, please research what others have experienced w/ side effects first. I did get a strange side effect when I first started the drug,of early morning anxiety waking me,and lasting up to two hours, however it dissapated a little more every day and was gone in about 7 days. I would do my deep breathing exercises and Danny would hold me and then I noticed all I had to do was squeeze Ht 8 (accu point) on my hand. This I am told I will experience everytime we need to raise the amt. For me, I have been on it for only 3 weeks and only 1/6 of the maximum dosage. Also please remember that my SOD attacks were brought on by chemical contaminates to my body and my attacks were anywhere between 2 & 7 months, 2 necessitating surgical ERCP procedures.
Wishing you all the best of health for the new year !
Nymphaea
Wow what a year it started with a HIDA scan and low ejection fraction in January, to cholecystectomy, to ERCP with biliary ES (mammometry showed increased pressure), to ERCP with pancreatic ES and post ERCP pancreatitis, to endoscopic ultrasound and celiac block, to another ERCP with ES with tight sphincters just 6 months after them being cut and post ERCP pancreatitis again, and now GI MD wants me to get a small intestine feeding tube.
How old are you Julie ? Do they call your syndrome PostCholecystectomy syndrome ? Or are they insinuating that you never should have had a cholecystectomy from the get go and that it was SOD all along ? Or are their thoughts about your case involving malpractice errors ? I don’t know about your case as I have only been on since Oct. So, anything you care to share will educate me further. Thank you and hoping you don’t need that feeding tube !
Nymphaea
I am 35 years old. It is not malpractice, it is just that nothing seems to help. I have pain everyday and some days nausea. I think 70% of people get relief from cholecystectomy when they have a low ejection fraction, so it is clearly indicated. I am just always in the other percent where the procedure does not relieve the pain. I have always been informed that things might not help, but it does not make it any less disappointing.
I’m having trouble posting lately – with detailed post not showing up so forgive me if I miss a response.
Thanks Karen and Nymph.
I’m glad Cymbaltia works so well for you – it’s an SSNRI much like effexor – which really did a number on me.
Regarding ejection fractions there seems to be no correlation at all between pain reproduction with CCK infusion, low fractions and the success of GB removal. So you can have a lot of pain with CCK infusion and no help from GB removal – or no pain at all with CCK and complete relief – same thing with ejection fractions. So many feel the test is useless. Seems it pretty much a crap shoot with taking the GB out and your best bet is to try to rule everything else out first.
Where a HIDA scan may help is to rule out blockages and SO spasm. It seem if the SO is a problem you will have a low ejection fraction – though some feel this doesn’t rule out mild problems and all cases. If there’s a stone in the duct it usually show up as a low fraction as well. Problem is if the fraction is low you don’t know if it’s the gall bladder, a stone, or the SO – so the test is very non specific.
Where there does appear to be a high correlation is with high fractions over 80%. Here’s what I have so far.
A ground-breaking research study was presented at the 56th Annual Meeting of the Society of Nuclear Medicine, presented by Dr. Kelly Holes-Lewis. Medscape Conference coverage can be viewed at: Commenting on this important research, Dr. Harvey Ziessman (Professor of Radiology, Div. of Nuclear Medicine at Johns Hopkins University in Baltimore, MD) calls the high and very-high ejection fractions indicative of ‘Hyperkinetic Gallbladders,’ and says, ‘If this is correct, we have to start paying attention to the upper levels.’ Kelly Holes-Lewis, M.D., the author of the study, is a Resident in the Department of Psychiatry, Medical University of South Carolina in Charleston, SC (former Chief Resident in Department of Nuclear Medicine at the State University of New York, Buffalo NY).
Colleagues retrospectively analyzed 108 patients during a 1-year period who had received cholecystokinin hepatobiliary scans and had gallbladder ejection fractions of 80% or greater. Questionnaires were obtained from primary care providers about patients’ symptoms, whether a cholecystectomy was performed and, if it was performed, whether symptoms improved, were partially resolved, or completely resolved. Complete data were obtained for 63 patients.
A cholecystectomy was performed in cases in which the scan was negative if there was clinically significant pain, said Dr. Holes-Lewis. She noted that the scans had ruled out the presence of any gallstones in the gallbladder.
A total of 28 (44%) of 63 patients with high ejection fractions received a cholecystectomy. Twenty-seven (97%) of 28 patients indicated that they had improvement in their symptoms after the procedure, and 22 (79%) of 28 patients said they had total resolution of their symptoms. One patient did not respond to the procedure. Investigators did not gather data on those patients who did not receive a cholecystectomy.
The data are preliminary at this point, but the findings suggest that surgery may be warranted despite a high ejection fraction, according to Dr. Holes-Lewis.
“We want to pursue this further and see if there is some pathology at the other end of the spectrum of gallbladder disorder that would be amenable to surgical correction,” she said. “A lot more work needs to be done before we recommend surgical removal.”
She speculated that a possible explanation is that patients might have an increased density of cholecystokinin receptors that, in response to a fatty meal, cause the gallbladder to clamp down intensely and result in pain, despite the absence of a low ejection fraction.
“It is very interesting preliminary work,” said Harvey Ziessman, MD, professor of radiology in the Division of Nuclear Medicine at Johns Hopkins University in Baltimore, Maryland.
“If it is true, it will have an important clinical impact in that it’s suggested that patients with hyperkinetic gallbladders get better after cholecystectomy,” he said. “Most of those patients don’t get referred for cholecystectomy because it’s usually the patients with low gallbladder ejection fractions that get referred. We focus on the lower levels of normal. If this is correct, we have to start paying attention to the upper levels.”
Ninety patients aged 21 to 56 years who had chronic non-calculous cholecystitis (CNCC) concurrent with hyperkinetic dyskinesia (HKD) detectable by a stepwise duodenal probing and sonography, by using a choleretic breakfast and by determining the relaxation coefficient (RC) that was equal to the ratio of the volume of the gallbladder (GB) after the use of a spasmolytic to the baseline GB volume. The patients were divided into 3 groups. The authors used as a spasmolytic agent pinaverium bromide (dicetel) in a dose of 50 mg (1 tablet) in Group 1), octylonium bromide (spasmomen) in a dose of 40 mg (1 dragee) in Group 2, and drotaverine (no-spa) in a dose of 40 mg (1 tablet). There was a more significant sonographic increase in the size of GB in Groups 1 and 2 as compared with Group 3. In the acute drug test and during long-term treatment as well, the highest spasmolytic effect was noted in patients receiving dicetel (Group 1) and spasmomen (Group 2) as compared with that in Group 3 patients taking drotaverine. With this, RC was 1.25 +/- 0.2, 1.6 +/- 0.15, and 1.08 +/- 0.1, respectively. No adverse reactions occurred in the patients having selective calcium blockers (SCBs) whereas the patients receiving no-spa were found to have the following side effects: dry mouth (n = 3), transient constipation (n = 1), and numb tongue (n = 1). Thus, the study has provided evidence for the fact that SCBs have some advantage over myotropic spasmolytic agents in the treatment of CNCC with the signs of HKD.
High gallbladder ejection fraction on HIDA (hepatobiliary) scan
It is just becoming evident that a high gallbladder ejection fraction on HIDA (hepatobiliary) scan can be evidence of gallbladder dysfunction and can be associated with significant pain. I am a physician with expertise in Nuclear Medicine. My colleagues and I are in the process of submitting cases to the literature showing that we have removed gallbladders in patients with high gallbladder ejection fractions and found that their pain was relieved and their gallbladders showed chronic inflammation on microscopic examination.
Well just when I thought I was of the hook SOD wise I came across a few studies that prove there is no correlation at all between HIDA scan results and manometrically documented SOD – it’s completely useless to diagnose SOD. So the doctor who couldn’t enter the bile duct for testing – and more or less fudged it with a HIDA scan – then told me I couldn’t have SOD on the basis of the HIDA scan was dead wrong.
It seems possible now I have a problem with very high ejection fraction and possible SOD. So I’m making an appointment with the original doctor I wanted to see in the first place.
I’m getting a bit tired of needing to the the research and teach the specialists their own profession. I can’t imagine how difficult it is for the average person. Here’s the study that proves the mistake. I’ve inserted clarifications to explain the terms.
Conclusion HIDA EF (ejection fraction) is not much better than the clinical impression. The sensitivity and specificity are marginal. The NPV is poor. Based on the review of these 93 patients, HIDA EF is not reliable for identifying SOH (hypertension – SOD really) . We recommend that patients with normal HIDA EF have additional testing or consultation before ruling out CAC. HIDA EF does not predict SOH (SOD).
Wow Brett
I am so sorry that your previous doctor ( or at least that’s what he claims to be ) appears to be as lame a duck as my original one was, not to mention countless
others with M.D. or DO attached to their name s :O( Did this doctor initially give
you the IBS ( irritable bowel syndrome ) diagnosis ? Unfortunately I’ve known
others who were given that diagnosis only to find later, sometimes many years
later to have SOD.
Dr. Freeman stated at my first appointment over 2 years ago that the HIDA scan was fairly antiquated even then but I didn’t really understand what he was getting
at since I was at the beginning of my SOD “adventure.”
Anyway and at the very least you will be posting here a bit more often ? and so we
can all get back to learning from all your research again ? How are you feeling
currently and what meds are you taking now ?
Wishing you a most happy & healthy 2010 with warmest regards,
Hi Brett!
Just another example of how we have to continue to be our own advocates. I am just baffled at how little research has truly been done about this and how little is really known. I told Dr. Freeman about the on line support groups when I saw him in Dec. He was aware of them and said that for those of us on them, there are thousands more like us who are misdiagnosed and undiagnosed, primarily due to lack of knowledge and arrogant doctors unwilling to admit they don’t know and to refer patients to doctors who do know. He said he’d be on these support groups, too, if he had to deal with this stuff! He went on to comment again about the little research that has been done, but is now beginning. He said they are learning every day. I never did look at my report to see what my EF was on the HIDA scan, but if I remember correctly, it was above 90%. Let us know when you have your appointment with the original dr. you wanted to see. Again, if I remember correctly, he or she is quite the distance from you, right? I hope you’re feeling ok. It’s good to hear from you!
Kris
This blog is fantastic….Seems that I may be suffering from SOD with pain just increasing. ALT is slightly elevated and pain in upper rt quad but no nausea nor vomitting. Researching profusely for answers and Dr.’s in NYC who are versed in SOD. You mention Dr. Freeman…in what state does he practice? Anyone have pain after taking narcotics?
Thanks,
marce
Hi Brett,
For what it is worth, my doctor told me that HIDA scans can detect SOD, but not 100% reliable, such that you can have a false negative. It is frustrating but absent ERCP (which I don’t think you want to do absent objective findings other than reported symptoms) it seems like the only way to “catch” SOD is repeated HIDA scans and/or bloodwork that would show elevated liver enzymes.
What is CAC?
I am sorry for your disappointment with this doctor. So hard to think that you finally found someone who gets it and knows what to do, only to have your hopes dashed again.
Are your primary symptoms URQ pain and nausea? Have you had other ailments/issues that seemed out of the ordinary but presumably unrelated? I apologize for not remembering your full story – sadly there are a lot of stories here and I tend to have trouble keeping them straight. I may have watched one too many episodes of Mystery Diagnosis but every time I have something new and unexpected I wonder if it all can be related to one underlying cause that ties everything together with GB/SOD issues (though I have yet to get a diagnosis of SOD in the first place).
Michele A.
Michele A.
Are you feeling better? I bet that was really scary for you. I hope you are doing better and I am thinking of you. Best wishes, Karen
Hi Karen,
Thanks so much for thinking of me! I am ok – still not feeling better but hoping to get some more answers this week. I did have some improvement this past week but it has sort of leveled off and then there are times I feel like it is getting worse again. Certainly could have done without this excitement. The one good thing (if you can call it that) is that there is some chance that it is related to the issues that started with my GB inflammation and has been giving me the SOD type problems that led me to this site in the first place. At this point the conventional thinking is that it just unfortunate coincidence, but there is some hope that the drs will pursue a possible connection if this latest thing persists.
Thanks again for your good wishes. Are you feeling OK? How are things since your last procedure?
Michele A.
Thanks for asking Michele,
I have been better after the stent placement. I still have good days and bad days. I was really depressed thinking that I was going to be “cured” after this! I should know better after fighting this for 9 years but I still remain hopeful. I don’t have the intense pain..the bad attacks after eating like I did before. That is a step in the right direction! I did have a bad night last night but still not like before. I have to go back on the 8th for my follow up and I think we will discuss whether to take this stent out and leave it out or put in another bigger one for 3 more months. At this point I’m really not sure what we will do.
I hope that you get answers to your problem soon. That’s scary when you don’t really know what is going on.
Best wishes,
Karen
My turn, gang.
I had a pretty nasty pancreatitis attack last night. I hate this stupid thing, because I’m generally okay until I’m not. And then it takes over my life for weeks and I don’t have time for this crap. We’re in a new area, I don’t have a doctor that “gets” SOD and I’m not sure what I should do. It’s a waste of time to go to the ER and gamble that the doc on call has a clue. I’m dreading telling the whole story again. So much so that I’m seriously considering printing out the 1,500 comments here to bring with me if I see a doctor. Do I start calling gastroenterologists and quiz them until I get one that admits he/she’s treated patients with SOD and related acute pancreatitis? I am not imagining this, I’m not stressed, it’s not reflex. No, I really and honestly don’t drink any alcohol. You know the drill.
My trigger is an abrupt change in my diet. Day to day, the SOD I can deal with. The acute pancreatitis attacks I get totally suck. For every attack I’ve ever had since 1994, I can point to exactly what did it. Fat doesn’t help, of course. But I eat pretty consistently and if I don’t…whammo. This time, it was my decision to join Weight Watchers. I have gained 30 lbs. since 2005 and it’s driving me crazy. My knees are achy so it was time to get it under control. I started following the diet on Wednesday and I was doing soooo well. Healthy, well-balanced diet. Right on points target. Exercise. I have not eaten a single high fat food. Not a one. But more fruits and veggies than I used to and just an overall change in eating habits. Should be good, right? Ha. For me, SOD doesn’t care if the change is positive, just that there’s an abrupt change. My husband said this morning that maybe I should have introduced Weight Watchers one lettuce leaf at a time. Yeah, right.
I was feeling pressure on the upper right side and back for the past couple of nights, but it was manageable. Last night, the pain got much worse and spasmatic. Typically my pain is in the 3 range at most, last night it was spasming to the 8-9 range. By 1 am I was vomitting on the hour. By 3 am my temperature was up to 99.5. Intense pain in my upper stomach and back. I spent the night awake on a recliner between throwing up because it hurts too much to lie down, and I got no sleep until a couple of hours around 6-7 am. Now I’m not puking anymore but the spasms are so sharp I want to scream. I feel like someone is trying to rip my right shoulder off by pulling on my breastbone from the front and back.
Now I know I’m in for a week or so of misery after every bite. Then the cycle will start over again the next time something sets off this horrid issue.
I hate this I hate this I hate this. Thanks for listening. This is the one crowd that I know truly understands how I’m feeling right now.
Hi Judi,
So sorry that you are feeling so bad again with this stuff. Are you still in NJ? I have a name of an excellent gastro in Princeton if you are interested. I don’t know if he knows about SOD, but he really helped my best friend after she was misdiagnosed as having Chrons, so I think he does think outside the conventional box (basically, he respectfully disagreed and did his own testing, despite all of the objective facts pointing to Chrons). I definitely would see him if I lived in NJ. I also have names in NY.
I think quite a few people here posted that high fiber (like “healthy” fruits and veggies) set off very bad attacks.
I hope your day gets better.
Michele A.
Hi Michele, Yes I’m still in New Jersey. We’re closer to Philadelphia now but Princeton is definitely do-able. Who is the doc?
I’m depressed because how the hell am I supposed to take off these 30 lbs. if it’s going to make me sick? ::sigh::
Thanks!!
Hi Judi,
His name is Gary Forrester and he is at Princeton University Medical Center. I don’t have his number but I imagine that it is easily found with a Google search. If you can’t find it, let me know and I will get it from my friend.
I would say a diet of lettuce but that would set it off too!! I know what you mean. Sometimes it seems like it is impossible to eat anything. I wonder if in the time being there is something you can take that would help break down the fiber and help you digest – like a digestive enzyme or something? I had a suspected case of IBS years ago and those enzymes helped, but I think SOD is a whole different ballgame. I am not sure if the enzymes helped with the fat or the fiber in the food.
Let me know if you contact Forrester and if he is able to help you. I hope so!!!
Hi Judy,
I am so sorry that you are having problems again. It sounds like you really had a bad one last night. I sure do know where you are coming from. We moved a little over a year ago and it is very scary trying to find someone that knows about this disease. I thankfully only moved 3 hours away from my old GI doc but it came to the point where he didn’t know what to do with me anymore so I was able to go to the GI doc that my old GI doc had referred me to to have my second spicterotomy done. He accepted me as a patient and he just did another ERCP on me and put in a stent on Dec. 3rd. It is much better than having to drive 3 hours one way to go to my old GI dr that didn’t have a clue anymore anyway so I lucked out with my move. The only thing is my primary dr is not familiar with SOD at all so that is a struggle. Did you have any pain meds or anti nausea meds to help you thru the night? It sounds like you are very miserable. I thought the same way you did about going to the ER but I just had to go in late Nov before I had my stent put in because I just couldn’t get the pain to go away. I thought it was going to be a useless trip but couldn’t handle it anymore. I went in and I was pleasantly surprised to get a dr and a nurse at the ER that knew about SOD and was very compassionate. He made sure he gave me enough meds to get the pain under control. So I’m just thinking that maybe the same would be true for you also. You might luck out and get a dr that knows and can actually help you break this cycle. I feel bad for you knowing what you are going thru. I hope you find a dr soon. Please keep us posted on how you’re doing.
Karen
Hey Judi, so sorry you are having a terrible flare. Your site has used such tremendous potential to reach out to so many. And I have new friends who help me and I can help them. Thank you.
Now, I was wondering if your weight watchers program involved you simply counting “Points” or did you also consume their premade foods.
I have noticed that alot of the diet company foods are made palatable by corn syrup. Corn syrup is one of the most aggravating substances to the pancreas. It’s one of the reasons we Americans have the highest diabetes populations in the world.
Also, prepared and processed foods are very burdensome to the liver, and the bile ducts are of course just one step away.
Now, if you are “counting Points” probably out of necessity you have been favoring carbs and meats to reach your #’s. Which mean your Ketones are probably high.
So, you see, its not that you made a change, its just that this change wasn’t the right one for you.
Does Diabetes run in your family ?
I know the weight fluctuations can be so frustrating w/ this syndrome. How do you feel about yoga ? There are some special exercises I do which are known to be good for the pancreas. They are called Cobra, 1/2 Cobra, 1/2 bow, full bow. They specifically elongate the bile duct area and can hopefully help you in reduction of spasm. For more info that the Ancient Hindus contributed, research Ayurveda / pancreas. And some dietary suggestions will be made known to you according to your particular Dosha. (Archtype)
Just throwing this out to you and the group, maybe some people will benefit.
Also if your husband can apply constant pressure to your back just below your shoulder blades 1 1/2 inch approx. from your T8 vertabrae, these are the pancreas Acu pressure points and you may get some relief from pain.
Nymphaea
Thanks, Nymphaea. I wasn’t eating any processed foods at all. Thinking back since Wednesday, the closest thing to processed I’ve had is some canned soup, which I have all the time. What I did is really cut back on carbs and had much more fruits and veggies. I think it’s the fiber that did me in, as I believe Karen mentioned. I naturally avoid meat. Maybe some chicken and fish sometimes. My daughter is vegetarian.
Hi Judi! I am so sorry that you’re suffering another attack. You’re right. This crowd you’ve gathered totally understands. Do you have any of your paperwork from your previous dr that you could bring to the ER? I know exactly what you mean about hating to tell the story. It sucks. I see that Michele A. Gave you a doctor’s name that can hopefully help you.in the meantime, I hope you can get to the ER, as difficult as it is. Its so hard to get pain under control when it gets this bad. Unfortunately, going to the ER is the only way to get it under control.
I know for me, high fiber foods such as brown rice, raw vegetables, set me into a terrible pain cycle. I can eat cooked vegetables, not raw. No lettuce leaves!
Please let us knw how you’re doing. Thank you again for this site. I’ve learned so much and have received so much support as well as having made some wonderful friendships that would never have happened if we hadn’t met here.I know its small consolation when you’re feeling so bad, but I wanted you to know how much I appreciate what you’ve done for me and all of us!
Keep us posted and take care!
Kris
I did print comments on the site for my Dr. a few years ago. She put it in my medical file. I have had a bad painful day. I have gain around 40-50 lbs. since on either Elavil or Nortriptaline, so I ask my Dr. about weening me off and just take the Levsin and the Tramadol. OMG, I forgot how sick I uses to be. Even with all my meds I still have pain, but without Nortriptaline I feel so bad. I’m down to 10 mg of it. If I can stay off of it I think I will ask the Dr. about Cymbalta. I just want to close my eyes and never wake up when I feel like this. I go back to work tomorrow after the Christmas break, I work at an Elem school. I’m praying I will get by tomorrow. I would like to go to a specialist that deals with SOD. Of course John’s Hopkins GI doesn’t think I have SOD, they think IBS, yea right. I have pain 24-7, for 4 years some days worst than others. Thanks for listening. This site really helps when I know I’m not alone.
I spent the entire day yesterday in bed and all I ate was a couple of slices of toast. I feel much better today. The spasms are back in the 3 range and I’m not nauseous at all. Of course, now I’m deathly afraid to eat anything.
Unfortunately, I don’t have any of my paperwork.
All misplaced in the move so I have to start with a new doc from scratch. I’m kind of thinking that may be a good thing. If I can find the right doc. My first call today is to the one in Princeton.
I’m so glad to hear you’re better today! Hopefully, he can get you in quickly. I’ve actually lost weight over the last few months for the reason you mentioned, being afraid to eat. Cottage cheese has become my staple! Michele from MN will be laughing when she reads this because it’s hers, too and our standard joke!
Good luck getting in with the new doc! I hope to hear that you continue to get better!
Kris
I spoke too soon. Shortly after I posted that comment I got a new joy…the worst diarrhea I have ever had. Not to be gross or anything, but it’s like water.
So what little nutrients I can get in are literally going right through me. A couple of hours until I can start calling docs.
Judi have you been able to get into a dr or at least get an appointment yet? I really think that you need to have some fluids so you don’t get dehydrated. Please keep us updated..alot of people are thinking about you and wishing you a quick recovery.
Karen
Robin,
I know how it is to want to get off a med that is causing weight gain. I took myself off of the lyrica because of that and it also made my hands swell up alot. I am so sorry that you having a rough time. I keep thinking that one day I will get my meds all straightened out and be able to function somewhat normally. I can’t tell you how bad off I would be without the pain meds. I have finally given up thinking that I will be able to get off of them completely. I know Kris on here has also said the same thing. You really need to go to a specialist that knows how to treat SOD. It is hard but it is imperative that you get the right treatment. I really hope that you have a tolerable day today.
Take care,
Karen
I live on the Eastern Shore of Maryland about 3 hours from Baltimore. I really would like to find a Dr. for SOD, but John’s H Dr. says he doesn’t think I have SOD and University of Md says that he fixed the problem by doing the ERCP and Sphinctotmy. I will travel anywhere to a Dr. to help me. I would once and for all want to know if I still have, for sure SOD. The Dr. said the ERCP and Sphinctomy might not work. Can you please let me know of a Good specialist that I can see, even if he has to do the whole thing over again.
Hi Robin! You sound like you’re willing to travel, so I would highly recommend my Dr. He is Dr.Marty Freeman at the University of Minnesota. He is well known and respected in dealing with these issues. On top of that, he is kind and compassionate. I will be happy to share his contact information if you are interested . Just let me know.
Kris
‘I have to agree with Michele on the potatoes. Potatoes and cottage cheese are my staples, along with pasta. I can tolerate butter on both the pasta and potatoes. I agree that you should have tests done to make sure that your pancreas is ok. I had an EUS and pancreatic function test done in late Dec. I’m still waiting for the results. The doctor performing them said that the U of Minnesota is one of very few sites who do those 2 tests along with the MCRP with secretin to try to get the full scope of what’s going on. I had an EUS a year ago, and asked to have another one performed to monitor any changes. Dr. Freeman recommended the function test at the same time. I hope to have the results late this week. The scope of the 3 tests do make sense to me to administer and complete to check for changes and any potential damage, which is why I asked for them. Like you, I have to believe that the attacks cause damage. I want to know and understand what it is.
I’m glad you can get in so soon and hope you can find a means to the short term relief, as well as a long term plan. The sad part about this whole thing that I’m learning is that since so much is still unknown, they really can only treat the symptoms at this point. For all of us and for future generations, I am also hoping that they can one day really pinpoint the cause and ultimately, the cure.
Thanks for sharing how you’re doing. If you can find the time, please continue to let us know of your progress. Just by the sheer nature of your blog, you’ve done so much for so many of us, and I can’t thank you enough for that. Please know that we’re there for you, too!
I hope to hear from you , soon!
Kris
I believe that you should share w/ your Doctor that a sphincterotomy of the major Papilla is most often not enough for an SOD’er, we often need a Sphincterotomy of our Pancreas’ Minor Papilla as well. This ERCP procedure is more invasive and the fibre optic must move through our delicate Pancreas ducts therefore creating a pancreatitis risk, so thats why a temporary stent is placed. The University of Indiana has done more pancreas work than any where in the world. Indianapolis is just a short flight for you and you would only be there 3 days. Dr. Fogel is a recco I have for you, as he performed my procedure which I just spoke of. Find them online, Read their info and contact info will be there if you wish.
Hang in there Robin, even though I’m doing amazingly well on Cymbalta, after my first month, I already need to increase the dosage. Just so you know, looks like I developed a very quick tolerance to it !
I have to agree with Michele on the potatoes. Potatoes and cottage cheese are my staples, along with pasta. I can tolerate butter on both the pasta and potatoes. I agree that you should have tests done to make sure that your pancreas is ok. I had an EUS and pancreatic function test done in late Dec. I’m still waiting for the results. The doctor performing them said that the U of Minnesota is one of very few sites who do those 2 tests along with the MCRP with secretin to try to get the full scope of what’s going on. I had an EUS a year ago, and asked to have another one performed to monitor any changes. Dr. Freeman recommended the function test at the same time. I hope to have the results late this week. The scope of the 3 tests do make sense to me to administer and complete to check for changes and any potential damage, which is why I asked for them. Like you, I have to believe that the attacks cause damage. I want to know and understand what it is.
I hope your appointment is soon and that you can find a means to the short term relief, as well as a long term plan. The sad part about this whole thing that I’m learning is that since so much is still unknown, they really can only treat the symptoms at this point. For all of us and for future generations, I am also hoping that they can one day really pinpoint the cause and ultimately, the cure.
Thanks for sharing how you’re doing. If you can find the time, please continue to let us know of your progress. Just by the sheer nature of your blog, you’ve done so much for so many of us, and I can’t thank you enough for that. Please know that we’re there for you, too!
I hope to hear from you , soon!
Kris
Oops! This posted twice. Sorry for the confusion!
Karen, I give up already about coming off Nortriptaline. First two days I had terrible headaches, I never get headaches and I feel like crying, chills, hot flashes and sick to my stomach. Ok after this all past my old bad SOD back breaking pains are in full force. Tonight I’m taking my meds! Just taking the Tramadol and Levsin without Nortrip. makes me very sick. I can’t work like this or live like this. Oh well, I tried, a little.
Robin, I had a similar experience when I stopped taking desipramine (a medication that is very similar and in the same class as nortriptyline). I had taken a low dose for less than a week, but it was making me so drowsy I was having a hard time staying awake to drive. I stopped taking it and had horrible sweats, muscle aches in my thighs and dizziness. It lasted at least several days. I am sorry it did not work out better for you.
I have an appointment with a doctor tomorrow. His bio doesn’t mention SOD but it does say “therapeutic ERCP” so I’m hopeful (not to have an ERCP, but that he’s about more than GERD, IBS and colon cancer). And I’ve contacted the last doctor who did all the tests (ultrasounds, MRCP, bloodwork) for copies of all my records which I should have tomorrow before my appointment.
I’m in a lot of pain after eating, but I’ve been holding down toast well so I’ve been sticking to that and my bowels aren’t the water they were this morning.
Thanks for your concern. It means a lot.
I am glad you got an appointment with someone so quickly. Is it someone convenient to you?
My husband makes fun of me because I always offer this idea for people having trouble keeping food down as if it is some sort of miracle cure – but it works! – boiled potatoes with a little bit of salt. You can chop them up to boil and then eat like that or mash them up a bit if you prefer that consistency. Pastina also works for me sometimes. And flat coke or pepsi (regular not diet). OK the nutritional value may not be the best but all bets are off when you feel like this.
Please keep us posted about how you are doing and how the appointment goes tomorrow.
Michele A.
I’ll have to try those potatoes, Michele. Might be a nice break from the toast (so far so good on hot cereal too). Thanks. Since roughage seems to have been the culprit that set off this attack, I’m avoiding anything leafy green. I learned the hard way that I absolutely can’t handle any carbonated beverage, even flat. I’ve been sticking to water and, believe-it-or-not, sugar-free Kool Aid.
The doctor is really close, practically walking distance which is why I decided to start with him. I’ll know 15 minutes into the appointment if he has a clue. Right now I’m just looking for some short-term relief since I know when the attack fades I’ll be okay until the next one. I know it can take up to 2 weeks for the attack to fade. And I should have tests to make sure my pancreas is still okay. These attacks could cause damage and it’s been about 4+ years since the last test.
Hey Judi,
It’s interesting to hear your reports. I just got horrible diarrhea myself – bright yellow as well . I stopped talking the Doxipin and it seemed this was what was holding off the diarrhea I used to get with every attack.
I’m just getting over another serious 5 day attack and it leaves me totally depressed also.
Given the diarrhea – and you have verified SOD , have you had any explanation?
I just got off the phone to the wonderful doc I was supposed to see in SA – DrToouli. After a long conversation he seems to think diarrhea is indicative of severe IBS rather than GB or SOD problems and wants me to pursue this avenue further before any more testing.
Given your clear case of SOD with elevated enzymes I’m starting to wonder if diarrhea is a sure fire sign of IBS at all?
This is the first time I’ve had such severe diarrhea in an attack. I think it’s more related to the pancreatitis than the SOD.
I really don’t think I have IBS. I’m generally okay except for some RUQ pain that is manageable and then I get short, extremely intense attacks. The worst is about 24 hours or so, and then it takes up to 2 weeks to settle back down.
Thanks Judi,
One doc told me IBS and SOD are very common together – though I haven’t read it elsewhere. It cold mean that a lot of IBS cases are misdiagnosed as SOD as well.
The manometry tests of both pancreatic ducts (I have divisum) was normal and my enzymes are normal as well so I can rule out pancreatitus I think.
Sounds like your pain is severe and typical collic in th RUQ – the short attacks are typical as well – but more so if it is stones. Mine is epigastric (which is still common for the GB) but constant now and mostly a horrible dull nausea.
Hi Brett,
Sorry you had to suffer more in order to bring up a topic we should discuss : Stool Color. I also have Yellow/ gold colored stools when I am having and SOD flare. My GI could never understand this. And my stools would also be very loose, but semiformed. I actually did my appearance on the Doctor Oz Show in order to discuss this, because out of all the possible stool colors, he left that color out in past shows!
I’m curious how many of this group experience this symptom ? Also we have floating oily / pasty stool as we are constantly passing fat. How many of us have that during a flare ?
In Traditional Chinese medicine, colors of the skin, body ,urine and stool have associated meanings. What we say for yellow is “Liver overacting on Spleen” Also in TCM, the spleen and pancreas are seen as the same organ. So, isnt it interesting that 8,000 yrs ago, they could speak about these things and relate all to health ? Afterall the bile ducts connect from the liver & Gall bladder to the pancreas ! And we all have some type of malfunctioning in that area. Even though, I am an acupuncturist, I must say I don’t think I would have made it through med school, w/o weekly acupuncture and massage for my SOD & Migraines, from the interns.
Hope you give it a try !
Nymphaea
I have to agree with Michele on the potatoes. Potatoes and cottage cheese are my staples, along with pasta. I can tolerate butter on both the pasta and potatoes. I agree that you should have tests done to make sure that your pancreas is ok I had an EUS and pancreatic function test done in late Dec. I’m still waiting for the results. The doctor performing them said that the U of Minnesota is one of very few sites who do those 2 tests along with the MCRP with secretin to try to get the full scope of what’s going on. I had an EUS a year ago, and asked to have another one performed to monitor any changes. Dr. Freeman recommended the function test at the same time. I hope to have the results late this week. The scope of the 3 tests do make sense to me to administer and complete to check for changes and any potential damage, which is why I asked for them. Like you, I have to believe that the attacks cause damage. I want to know and understand what it is.
I hope your appointment is soon and that you can find a means to the short term relief, as well as a long term plan. The sad part about this whole thing that I’m learning is that since so much is still unknown, they really can only treat the symptoms at this point. For all of us and for future generations, I am also hoping that they can one day really pinpoint the cause and ultimately, the cure.
Thanks for sharing how you’re doing. If you can find the time, please continue to let us know of your progress. Just by the sheer nature of your blog, you’ve done so much for so many of us, and I can’t thank you enough for that. Please know that we’re there for you, too!
I hope to hear from you , soon!
Kris
Dear Judi,
Dr. Savreet Sarkaria is notably one of the best GI’s specializing in ERCP in our country. She has only a 1% rate of her patients getting pancreatitis from an ERCP, while the national average is 10%, because she is extremely picky who can have them. She WILL NOT perform them on anyone w/ pancreas divisum, however. Should you like to consider her, she is w/ Weil Cornell at New York Prestbyterian at 69th and York.
Hi all…I’m back from the doctor. I went in with zero expectations, and I liked him a lot. He was pretty familiar with SOD in recognizing the symptoms and such, but doesn’t treat it. Just the fact that he wasn’t treating me like I was nuts was such a welcome relief. He was practically finishing my sentences as we were talking.
He is referring me to Dr. Adam Elfant, who has been listed as a “Top Doctor” in both New Jersey and Philadelphia Magazines for “Theurapeutic endoscopy, endoscopic oncology, ERCP, complex pancreatic and biliary disorders.” His office has a good relationship with him and he will facilitate getting me an appointment.
In the short term until I can see Dr. Elfant, he put me on Pamine Forte (methscopolamine brom) and ordered a new round of blood tests which I’ll get done on Thursday morning. I just took the first pill and I’m hoping for some relief by tomorrow.
Yeah! Progress! What a good thing that he recognizes where to send you to a doctor who does have the knowledge and willing did so. I’m not familiar with that medication. I’ll do some research on it. I hope you continue to feel better and please keep us posted on how you’re progressing. Thanks again for all you do!
Kris
Incidentally Judi, wasn’t professor Elefant Astro Boys handler in the cartoon? Large chap with a big nose and gray wrinkly skin – related to Piglets friend Hefalump? I wonder if he uses an instrument to do the endoscopy – or just his trunk?
Methscapolamine used to be use for peptic ulcers before they got PPIs. Nwo it’s used more as an antispasmodic. It’s either anticholernergic or anti muscanaric I think.
Scapolamine is a derivative (or vice versa, can’t recall) and available OTC here in a few preparations – sea sickness pills etc. Doesn’t help me worth a dam unfortunately but I hope it works for you.
Hasn’t helped yet, but he purposely gave me a long acting preparation to minimize side effects. I’m hopeful, given that my pain is definitely spasms. Thanks!
Thanks Nymph,
The story I’m getting regarding yellow stools – or in my case lack of “stools” (lovely subject but it’s important I think) – is that bile salts are what turns stools brown – so yellow indicates the absence of bile.
This apparently can be indicative of liver dysfunction. And It’s reasonable to assume any blockage of bile – like stones or SOD might do the same.
In my case 96% of the bile was getting through on the HIDA scan – but that may be because the CCK relaxes the cystic duct and SO (in SOD it’s paroxysmal and does the opposite).
The other reason for yellow stools I’m given is rapid transit through the small intestine with poor absorption of fats.
I think I’m going to go ahead and have my GB out. The study shows enough folks with high ejection fraction got relief to make it worthwhile – even if it can’t explain all the symptoms and why I didn’t get pain with CCK. Pain with low EF is no indication either.
Dr Toouli dosen’t think a high EF should be problematic – he just thinks it’s an example of very good functioning. He also says it’s not a new idea at all and has been around for quite some time.
But he wasn’ t aware of the recent study either – which was pretty convincing and even he thinks I should probably have the GB out just in case. He thinks it’s easier than sphincterotomy with less complications and worth a shot.
Hi all, I just got back from Dr. Elfant. Unlike every other doctor I’ve seen in the past few years, he’s very confident that what I’m dealing with is Type II SOD due to the elevated LFTs I’ve had. The other doctor thought it wasn’t elevated “enough” to warrant treatment. He wants me to have the ERCP w/sphincterotomy. So I’m going to do it once and for all (hopefully once). Scheduled for January 26th.
I have to say, I’m scared to death. His complication rate is around 5% and he does ERCPs daily.
For those that have had this done (most of you?), please tell me what to expect. This guy wasn’t exactly the stick-around-and-answer-warm-fuzzy-questions type.
Hello, first time on this site and I am a long time sufferer. I’ve had SOD for over 4 yrs. and still dealing with the pain. I’ve had the ERCP three times and stents all three times due to scare tissue. TPN for over six months. I wish you well and will pray for a safe procedure and recovery. If it’s any encouragement, I felt releif within a few days. My heart goes out to you and your family. Keep good thoughts.
Welcome Debbie,
Youve come to a great site with everyone on here willing to help each other with sharing our stories or what have worked with us or hasn’t worked with us and most importantly just being here for us to just VENT because we all understand what we’re going thru!!
Karen
Debbie, welcome! Is TPN a drug for autoimmune disorder? I have had recent issues that at first appeared to be unrelated to the SOD like issues that led me to this site in the first place, but now there is a working theory that it’s all being caused by an underlying inflammatory disorder so I am exploring that as well.
Karen, thanks for your reply above. I’m about the same but as of now on Motrin to treat the condition that seems to be causing the problem and then probably exploring if there is underlying condition causing all of my problems. Who says life is boring? LOL. Let us know how your appointment goes today and what is decided about the stents. I think the most dejecting thing about all of this is even if you get a definitive diagnosis, there doesn’t seem to be an easy fix.
Michele A.
Hi Judi! It is a very scary procedure to face. As you know, as always, the skill of the physician performing procedures influences the outcome. However, from what I’ve learned and experienced, this factor is more important than ever when considering ERCP. It’s good that he does ERCP’s daily and also a good sign that he shares his complication rate with you. Dr. Freeman did my first and only, so far, ERCP with sphincterotomy, in July. I had no complications as a result. I’m sorry to have to say that I also had no relief, in spite of the fact that I had very high pressure in my common bile duct, and he did put in a very short term stent. He has never said if I am SOD II or III, but from what I’ve read, I’m assuming II with high pressures and pain. I also have pancreas divisum. I got the results of my Pancreas Function Test today with the dreaded “normal” result. It wasn’t Dr. Freeman who did the test, so this doc won’t come to a conclusion without all of my test resuls for comparison. I have to wait to talk to Dr. Freeman tomorrow to get his opinion on where to go from here. I’m sure I’ve posted about Dr. Freeman’s opinion about the lack of understanding of this condition as a result of the lack of research. He’s told me they are learning every day. I will post what I learn from him tomorrow. Certainly, I am no medical expert, but I think I would go ahead with the scheduled ERCP. If I remember correctly, you got relief from the first one you did, correct? It’s so good to be communicating with you. I just wish it weren’t for the reason it is. I hope you’re feeling a bit better. Please let us know how things progress. Thanks again for being there and for creating this site that ha done so much for many of us!
Best,
Kris
Thanks, Kris. I’ve never actually had an ERCP before. I chickened out of going for it back in 2005 because I didn’t trust that the doctor I was seeing was confident enough. I’ve just been dealing with the pain and attacks, and I can’t do it anymore.
I’m feeling better today than I did a week ago, but nowhere near 100%.
Judi,
As you probably remember from my previous posts that I just had my 6th..yes 6th ERCP done on Dec 4. It is usually not too big of a deal if you get a dr that knows what he is doing. I have never had pancreatitis after any of them. I have had to stay overnight with all of mine and after the first one I went home the next day and that was a Friday and I was back to work on Monday. That was with having a spincterotomy done as well. I had pain for a day or so and then no pain pills and almost literally no pain for 2 years. It was so great! Just had an occasional mild flare up that would last for maybe a couple of hours and be over. Boy do I long for those days back!!
Two years later I had another and just almost the exact same story. No pain for 2 more years! The third time 2 years later the DR. put in 2 stents and I have never been the same. Usually they just give you a conciencous sedation where you don’t feel or remember anything but you are not completly under so you wake up sooner with less side effects. My dr said I become too combative now so he won’t touch me with out me being under a general sedation (being completly under) and I had a real bad experience to that when I came out it. I think you really should give it a go and see what they find and what they can do about it. I know it is scary but try not to worry about it. Just think how much better you’ll be afterward with the pain gone. I will be thinking of you.
Good Luck to you,
Karen
Thanks, Karen. I think it’s the conscious sedation that makes me the most nervous. I have had 3 colonoscopies, so I know what the drugs feel like. I’ve also had 2 endoscopies and I was completely out for both. The thought of being awake while the tube is going down my throat makes me feel far more uncomfortable than a tube going in the other direction if you know what I mean.
I’m glad you’re better! I don’t remember if I had general or conscious sedation. Whichever it was, I don’t remember it at all! I’m thinking it may have been general, as I well remember my colonoscopy, but that was because it took the dr. an hour and a half to do, with 2 nurses pushing with the palms of their hands, just to get the scope through because of all the adhesions that I have. Yikes. I was very comfortable during the ERCP and afterwards. I did spend the night in the hospital, which is standard procedure for Dr. Freeman to do with all of his ERCP patients. Mine was on July 2nd. I spent the holiday weekend with friends and went back to work, as Karen did, on the following Monday. I would do it again if Dr. Freeman feels it’s appropriate. I know what you mean about not feeling 100%. I communicate independently with several members that I’ve met on here. We joke about what a good day is now compared to pre SOD!
Kris
Judi.
After my ERCP w/sphincterotomy I spent 48 hours in the hospital resting and 10 solid hours of vomiting up pure bile. It didn’t burn – it was more sweet and I was just very dizzy with every sound around me. Not sure if anyone else has ever had this happen. My doctor told my husband that there was so much bile backup that my body would be discharging it. We had no clue that I would be vomiting like that for so long. But, it was so worth it. By day four I felt like a new person and was able to eat again – even salad. I had a pretty good run for about a year or so with very little pain. But now it’s been three months of not eating much and pain everyday. The doctor says I’m pretty sick again.
Well, looks like we are having an ERCP done on the same day. I hope it goes well for you. I’m sure it will. Just stay positive and you will do great. I will keep you in my thoughts!
Judi you will be “out” before they even get close to you with the tube . Please don’t worry about that..you will not even know they are doing it.
Hey Judi,
After suffering 4 1/2 years with SOD III, I found a 3rd GI professor to treat me during finals week semester 7 out of 9 while in med school. I was convinced after my studies I either had SOD or something wrong w/ the ampulla vedar. So, when He brought up sphincter of Oddi and I told him he was validating not only my own diagnosis, but also another professor GI who met me 3 1/2 yrs ago, he agreed to do the procedure the next day. I was crying and falling off a chair in his office and this was after a meal of “Buddha’s delight” w/ brown rice. Since my GI was Chinese, I’m sure he got a kick out of this from an acupuncture student, but hey you never know. My SOD cleared up immediately after the procedure. He came to visit me and asked if I needed anything for pain. I said. “What Pain?”
The next morning was my 42nd birthday and I was brought a soft breakfast including dairy products. I was like (Are they serious ? They want me to to eat dairy FAT already ? Well ok, I feel fine. And I ate everything. Later was told I was not allowed fat for 2 weeks and the breakfast was a mistake, but nothing happened. Then 4ms. later to the day it wore off and after visiting his office 2X and waiting 1 ms, I was still hurting and although he had some theories, he had no suggestions. So, thats when I found Dr. EVAN FOGEL in INDIANA and scheduled my phone conference, evaluation and procedure. I did get severe pain 24 hours later and wound up in a Pittsburgh U Hospital on the way home. THought I was having a heart attack because of a feeling of a fist clenching in my chest and pain spreading to my pects; I remained calm, kept doing deep breathing and found out that I had elevated Lipase for the first time. I was able to only take drink supplements for the next 10 days until the stent was removed from my minor papilla and I took food after that little by little w/Pancreatase enzymes and in 1 ms was ok. Stayed ok for 6 ms. until joining your site this past Oct. Then DEC ‘09 figured out the culprit, causes and medication which worked 100%. Eating a normal diet now and just needed my first Cymbalta increase this past Tuesday, because interesting enough w/ my “Breakthrough” migraine also came a “breakthrough” SOD attack.
I just want to take a moment to thank all of you who have been posting here over the past few years. I’ve said many times that it isn’t me who makes this thread what it is, it’s YOU. All I do is stay out of the way and try and keep the site up. And now that I really need the comments as a resource for ME, here you are and I appreciate it all the more.
I joined the big Yahoo group a few days ago, and it was a huge mistake. Those of you who are on it may have noticed that I posted. I mentioned this blog not to promote it or for some sort of competition to the group, but simply as a point of reference so those of you who post here would recognize me there. The woman who runs that group with an iron fist emailed me and made it clear that I was not welcome because, and I quote, “this isnt a place where other sod venues can come in and post about their venues.” She said a lot more, too. I was upset and hurt and unsubbed.
Please please know that anyone who comments here is welcome/encouraged to share what they have learned no matter where it comes from. Another site, blog, message board, medical resource…I don’t care. All I care is that people are coming together to try and help each other feel better.
Thanks for listening.
Hi Judi! I am so sorry about how that woman treated you! I just don’t get people sometimes, especially when you’re all dealing with the same issues and could help each other out. It’s also easy to be mean sitting behind the protection of your computer. Maybe the best consolation is that while there are people who are mean for no good reason, there are also people who are nice and go above and beyond to be supportive. People on this site are like that and I am so happy to have found it. Let’s write that, um, person, off as one jerk (that is the nicest I can do to describe her) and hope we don’t encounter more like her! Of course we will, but there’s always hope! I get in trouble when I say “sometimes I just hate people” (apparently there are those who think that is a bad example for my kids – LOL (I don’t say it in front of them)) but there are times that it just sums things up well. Please keep us posted on how you are doing this month and of course when you have the procedure.
Michele A.
I hadn’t seen your post, but did go back and read it. You were in no way trying to promote this blog. Your comments were exactly like you said, a point of reference. Like Michele, I’m appalled. I’m out! Like you, all I care about is all of us coming together to help each other. Yikes. You really didn’t need that! I’m sorry you had to endure it. I hope your day becomes a better one!
Kris
Kris, my day is already a little better thanks to your comment.
The vengeance bitch in me wants to now start a SOD listserv that is open and supportive and collaborative just to show that wench how it could be done. But I guess I kinda already did that.
Judy, I am so glad you are better, and I hope the ERCP gives you some relief. I too have looked at that yahoo site and got turned off from it right away. I felt much more comfortable and welcomed here. I have not been here in a while do having a long extended episode myself. Take care, and thank you for bringing us all together.
Michele/MN
There was a site run by a certain Dr. Ishmael, I believe, and I first joined their’s, but once I joined yours, I was sharing the address w/ a woman from Scotland who had no support system over there. The Site blocked out the name of your site, then sent me a threatening letter, saying I may get kicked out for my “indisgression”. I felt like here I was dedicating my time and medical knowledge to helping others and I was going to get blacklisted for it ? So, I wrote a letter explaining to the others that the owner of the site should remind himself what country this is and how it is not Communistic Totalitarian Regime!
You sure did!
Hi Judi…it’s Laura…I also tried to mention the “patientslikeme” site and she wouldn’t allow it to be posted. That website is tracked by drs about treatments patients are receiving for MS, ALS and some other unusual diseases…so I thought SOD could be nominated if there were enough of us……it’s not about competition…we are all in this together.
About the ERCP w/spinc…I had mine Oct 26 09….I was fine and back to eating anything I wanted for about a month…and then symptoms started coming back…my regular GI just says “You had the procedure and blood levels are normal, You are fixed”….which is why I’m back to nausea, pain, and bowel issues!
I had really hoped it was going to stop the madness! Unlike a lot of people on this blog, I’m new to this, mine started in July 09.
I know there are others that have said the ERCP worked for them or provided a longer period of relief, so I pray that it works for You! I have switched my insurance at work so I can go out of my local area. The Dr that did my procedure in Boston did not want to go into the pancreas. The procedure itself was really no different than the regular endoscopy….other than I had to stay the next day due to higher liver enzymes. They give you enough sedation that you won’t even see any equipment or feel it. I woke up with no memory of it….just some pain, but tolerable. They did have me lay on my belly on the table when I went into the procedure room. Everyone was very comforting and nice which made it easier. I hope it works….take care.
Laura, unfortunately, your case sounds like mine, if they don’t do a sphincterotomy of the minor papilla by going into the pancreas as well, its as if you can never get total relief. And that’s so frustrating, that we are each made to go through at least 2 ERCP’s in order to make some headway. I’ve had an Interstitial Cystitis attack for 1 ms, and it was ushering in an MS relapse of this week and I just got rid of my migraines and SOD w/ Cymbalta just in time for this relapse. I was so happy and working and now I can barely use my left foot and the bladder pain is shooting down my left leg and I know I’m venting but I guess it just shows you that your in the right place. I also belong to the Patients Like Me site for MS. And my official diagnosis is “Possible MS Prodrome” which means I have all the symptoms but no lesions on the brain or spinal cord, which means by law I can’t receive treatment or necessary help if it ever came to that. May I ask which PLM site you belong to ?
Nymphaea
Hi Nymphaea, I haven’t officially joined the Patients Like me site…I just visit it….I have MS symptoms also. I was diagnosed by the lst dr I saw 3 1/2 yrs ago, but I wasn’t totally comfortable with him . So I went to 2 other drs which made matters worse. One said I didn’t have it but didn’t know what was wrong and the other told me to be glad that my symptoms weren’t worse! I use to be able to walk normally and I walked 5 miles a day, now I have ataxia and a can’t walk right. I do have an abnormal MRI but my lumbar punction was normal. I recently changed my insurance so I am going to find a different dr when I get the courage to do it again. As I’m sure you know, it can take many years before you finally get a diagnosis…..it just stinks when you have two or more crazy things at the same time!! SOD & MS ….but you’ve got to keep on going!
Hey Laura, Yeah I know. I’m working at a new Trauma Center and was hired and started work during a remission. And wouldn’t you know it my flare has been showing it’s ugly head everyday this week until yesterday I awoke unable to use my left foot properly. I stayed in all day yesterday and today I practiced walking on the board walk all bundled up w/ my honey who pushed me and seriously w/ BREAKS I was able to do it w/ my MBT sneakers. So now I’m having a little trouble but I think as long as I take a lot of breaks tomorrow I should do ok at work tomorrow. I don’t want anyone to know. I love my job and want to keep it.
Nymphaea.
Has anyone heard from Melea? Last I read here, she was in the hospital with a tentative diagnosis of amyloidosis, but it has been awhile and I’m just wondering how she is. Thanks.
Thank you for the welcome. I have been waiting for a site like this just to know that I’m not the only one out there in pain and just managing through each day. Michelle had asked about the TPN. It’s liquid nurishment thru a bag. 12 hours on 12 hours off. I got to a point I could not each or drink and dropped over 40 lbs in less then 3months. NOt a good time. Also, I am interested in the outcome with Melea. I had been dx’d wtih amyloidosis a few years ago. I had a tumor removed from my eye and went through treatment that really scared my husband and myself. I hope for her sake it is not. BUT if she is dx’d with amyloidosis that scares me even more. Since there are just too little medical studies being done on SOD and amyloidosis – could there be a connection. When I found out about my amyloidosis it was basically a death sentence. (not meant to scare anyone) but the truth is, the only documentation out there had been on lab rats. When the tumor was stained with the congo red dye it was positive. I remember sitting in the specialist office and he said to get my affairs in order. I had five years at best. WELL, that was almost 15 years ago. I refuse to let this get me down. Hope Melea will be ok. Please post when you hear anything. Thank you and I am very glad I found your site.
Welcome, Debbie! This is a wonderful site and you will find alot of support here. Wow. You’ve been thru ALOT! Your message will offer Melea hope. I have not heard from her and have also been concerned. Her last post was on the 18th or 19th of Dec. She was in the hospital. I told her that I had intended to visit her on the 19th, but then I ended up with my mom in the ER for heart issues that day. She’s ok, thankfully!
Melea, if you’re reading these and are able, please post us an update about how you’re doing!
Again, welcome, Debbie! I’m sorry you had to find us here, but you’ll love it here!
Kris
Kris,
Well I went to three different dr appointments today and I am exhausted! It’s funny how it all owrked out that I could get into all three of them in the same day. I had 2 appointments booked and then called my pain dr to see if I could get into him today and was able to get an appointment so that made three! I went to my regular dr and she saaid that my bladder infection is gone. I asked her if I couldn’t just have a standing order to come in and get tested so I wouldn’t have to wait for an appointment and she said yes. Then my pain dr said I could increase my number of pain meds so now it should last me a month. He wanted me to go on the long acting med and I told him we tried that already and I do better with just the oxycodone so I can adjust it better if I have to. He agreed. The third dr appointment was with my GI doc and I go back in on March 11th to have this stent taken out and possibly another larger one put in. He said he won’t know until he gets in there what he is going to do yet. I told him he needed to do something different with the anesthia because I don’t want to go thru that again and he said maybe they can give me versed to help keep me calm while I’m waking up. I hope they do that because I’m already freaking out about it!
How are you feeling? I hope you are over your latest flare up.
Judi are you doing better now?
Michele are you doing better also? I know a few of us on here had a rough week and hopefully everyone is on then downslope and now starting to get back to “normal” whatever that means to us.
Karen
Wow. What a day you’ve had! However, the results sound really positive on all fronts. The scary part is facing the procedure. At least the dr. has a recommendation about what to try to offset the previous problems you’ve had with anesthesia. It’s good to hear from you! I’ve had a few good days and a few tough days with this condition that has decided that I have not control. I have to say that I hate that!
You are right. There truly is a new definition of normal! Let’s talk more tomorrow. I’m beat and have my grandsons tonight. I’m still trying to get them to bed. They have the classic excuses. I need more water, I’m hungry, etc. It’s fun!
Welcome Debbie ! I can’t believe this SOD syndrome is associated w/ Amyloidosis. And 2 cases in such a relatively small amount of time. We are all very honest on the site even if we are confused about terminology. And although the other members of this group are aware I have had recent bladder woes, what they don’t know is I’m suddenly running high levels of protein in my urine. So, together we are strong in this “no embarassment zone” and its amazing how many answers we are finding together.
Hello all. I’m new to the site but been following for a few years. Been suffering with SOD since 2005. In 2008 I dropped to 95 pounds and was deathly ill so I had an ERCP and sphincterotomy. It saved me. I was able to eat again and had six months with no pain and a year of only a few bad days here and there. Unfortunately my lipeases are back to being slightly elevated and I’m now on my third month of solid pain and limited diet. 75% of time spent in bed, sitting, resting and curled up into a ball. Went to ER twice this past week. My Dr. that performed my first ERCP referred me out-of-state to Dr. Cotton. I see him in two weeks to have an endoscopic ultrasound of the pancreas and another ERCP. It’s been really hard these days and I just want to thank Judi for this blog and everyone on this site. Just reading everything on here has given me much support.
Also, I want to hear more about Amyloidosis. Does anyone out there suffer from SOD along with any other metabolic or neurological disorders? This is all very interesting to me.
Nymphaea,
Are you still having good results with the Cymbalta? Do you think this will only help the pain? I also get nausaus and spasms.
Shelly,
Everything vanished on Cymbalta, the pain, nausea & loose yellow bowels returned to normal and still are, but I needed my first increase last Monday and last night and today I had 2-3 level pain after ingesting olive oil. So, that tells me to swing back to a low fat diet and maybe I have to be on the increase for a couple of weeks for full remission of symptoms, again like I was enjoying a couple of weeks ago. I’ll let you guys know how I am doing.
I am so glad I found this site. I can’t tell you how much it make me feel better just knowing that others out there have the same symptoms. I had so much bile in my stomach that they had to insert a NG tube to drain it all. I spent 30 days in a hospital just until I was stable enough to be transported to Baltimore. Then spent another four weeks and discharged home with a visiting nurse for six months. TPN was over a thousand dollars a bag just to keep my body weight stable and keep me alive…..All in all when that happened I counted good days because there were so few of them. Then I counted bad days because they were so few but now it’s been three weeks of constant pain. The spasams are constant everyday but some days are worse then others. The last three weeks were quite bad even ended up having a stat ct because of the vomiting they thought I might have ruptured something. PAINFUL>>>>I am not sure how everyone else is trying to stay one step ahead of this but I found that if I eat a BRAT diet, that seems to work very well with the nausa and pain. Bananas, Rice, Applesause and Toast. Sometimes I eat this for months until the pain subsides. Does anyone elses pain start in the upper right quad and comes around in a C pattern to your belly button? When I have the spasams that is the constant pattern that I have. Fevers off and on, loose stool with the greasy layer in the toilet. Good stuff to talk about but no one else is doing much research on this due to the lack of patients with the disease. I have factor V lienden ( a blood disorder that you get blood cots for no reason) and the amyloids. If there is anyone else out there with this, it might be a connection that other specialist have not come across. I would like to find a cure for this just as I am sure you all would. Getting older and not sure in my older years if I will be able to cope with the pain. I hate taking medication and find myself not taking pain meds as I should and then the pain gets ahead of me and then there is no control. Please, if you have suggestions, home cures that help you through the rough phases, I am all ears. This is not fair to my husband or my family. I cannot go on vacations with out knowing where the nearest hospital is and I have missed out on so much because of the pain with my friends and family. I am blessed for every day I am here and there is a reason that I AM still here because this almost took my life twice now. Maybe the reason is to help other cope with this illness. God bless you all. YOU and YOUR families. I know a young lady that when this happened to her, her husband left her because he could not support her. I have not heard from this young lady in over a year but she was really bad. She had to have a pump inserted to help cope with the pain. Thank you all for letting me voice my thoughs.
Ginger tea and candied ginger calms down nausea and all pain syndroms in the body, boil some fennel seeds and this tea is also amazing. Aloe Vera Gel 2 oz on an empty tummy every morning 1 hour before breakfast also has amazing healing qualities for the whole GI route. Shark Cartilege is keeping this Dr. alive in Long Island who has had Pancreatic Cancer for years. Ursodiol RX is a bile acid known for breaking down Gall stones, however it also erradicates bile chrystals and salts which can “sludge up” the ducts. Works overnight for me when I am chronic. I need 3/day then , 1 w/ each meal, so if I have a 4th “meal” of a snack it has to be fat & protein free in order for me to digest it w/o Ursodial. (Don’t let the name fool you, it is SYNTHETIC Bear bile, not real ! ) I also need 4 Pancreatase MT20’s w/ every meal when I’m chronic. If all else fails, I drink liquid protein drinks and eat pretzles ! Pineapple produces an enzyme called Bromain & Papaya produces Papain. Both can assist digestion. Other than eating it cooked or raw, Natural Stores sell a roll of these enzymes to carry in your purse. Hope this gives you some ideas !
Hello to all,
I had my gallbladder removed a little over three years ago and have been on the roller coaster ever since. Like many of you, I have some URQ pain, but mine is mostly in my back and when it acts up I get yellow stools etc… you know the story. Just told by a new GI doc that I have IBS, which I never had before. More and more, I believe I have SOD, though blood tests on liver and pancreas have not shown anything, nor has MRCP. Anyway, I was writing in regards to Nymphaea and others with MS and wondered if you had tried or heard of LDN, or low dose naltrexone to treat it ?
Welcome, Drex!
Oh, the dreaded IBS diagnosis, the blackhole doctors throw us into when they don’t know what else to diagnosis. It’s really tough to find a GI who understands all of this! What area do you live in? One of us could possibly suggest a dr. that could help you. It’s a long journey to find the right dr., but worth the trip! I’m sure Nymphaea will reply to the questions you’ve asked.
There are many of us with SOD who have never had eleveated enzymes, normal pancreas and liver tests, normal MRCP, yet we deal with SOD issues. I fall into the category I just wrote about. I did have highly elevated pressures that were found during my ERPC this past July, which is indicative of SOD. ERCP is the gold standard for diagnosing SOD. It’s really important to find a dr. who is well experienced in performing that test. It carries a high risk of causing pancreatitis as a result. The skill of the doctor performing is it is the biggest factor in minimizing the risk!
Kris
Hello Drex,
Oh, Kris Knows me so well already LOL ! Welcome or as we say Benvenuto ! I wonder how you know about LDN ? Do tell ! But seriously, I am only “probable MS Prodrome” otherwise I am only unknown Nuerological condition. Although, I’m sure the others in this group will tell you, I do my research, and truthfully w/ my flares it can only be MS, but the early stages, so therefore, w/ no Lesions showing up on my brain or spinal cord, by law I will never be allowed ANY MS medications, even if I have 20 MS symptoms. 5% of adults over 40 have such an MS case. Some are only confirmed on Autopsy. Because some lesions are very far within the brain and do not show on MRI, others are many but pin point and simply too small to show. Naltrexone and other Methyltrexates are Cancer medications and very serious medications which can do more harm then good to certain people. The famed “ABC” drugs which are Beta Seron, Interferon, & Copaxone all cause Pancreas & Thyroid damage, Since I have SOD, pancreas divisum ans Hashimoto’s Thyroid, I personally will never try them. But it doesn’t hurt to mention such and I’m really glad you jumped in and did !
Nymphaea
I live in Columbus, Ohio. I stumbled accross information on LDN while researching IBS and Crohn’s. I have not had an ERCP, and have not asked for one because, frankly, the risk of pancreatitis scares the crap out of me and it seems like the sphincterotomy doesn’t help alot of people anyway. I just started seeing a new GI doc and haven’t discussed SOD. I could probably talk my Primary doc into about anything if I wanted to force the issue.
Hey Everyone, Once a year I go back and try to see a Dr. about this horrible thing I have. I had a ERCP and sphincterotomy 3 years ago and it didn’t help. Even though Dr. said this is what I “Had”, he said he cured me. Yea, right. I’m on pain management, thank God or I wouldn’t want to be here. Ok, Bedhead told me about the Dr. she saw in South Carolina, Dr. Cotton, so we called his office and sent all the paperwork and files on me for the past 4 or so years. The lady on the phone said she didn’t know if he would take my insurance or not. I have Care First , Blue Cross Blue Shield. For some reason I thought most Drs. would take it. It’s been over a week and no word from this Dr. I live in Ocean City, Md., about 3 hours for Baltimore. Does anyone have a great GI specialist they can tell me about. I’m trying to get something lined up for the spring or summer when I’m off from my job, I work at an elem. school. Please let me know. I have been to University of Md, they did the ERCP and John’s Hopkins says I have IBS. My son’s girlfriend’s mother is the president of Md General Hospital, you would think I would know a good Dr. Thanks
Hi Robin
I heard that you were referred to Dr. Cotton but you stated here that his office
hasn’t called you back? I know how frustrating that can be as it’s happened to
me also (not from Dr. Cotton’s office) but I would still try contacting them
again because I have heard so many good things about that group in regard to
CP, SOD (biliary disease in general). In fact, if I wasn’t already situated with
MF in MN (Dr. Freeman) I would most definitely seek out Dr. Cotton.
I’m not surprised his office questioned your insurance as that is happening all the time now, even with BCBS. We also have Blue Cross insurance and they have
begun questioning a/o turning down just about any claim they’re getting right now. Our broker calls it “posturing” as they go about negotiating with doctors, hospitals, even our govt trying to figure out how they can keep making that almighty dollar, etc., etc.
I can very highly recommend Dr. Freeman/Univ. of MN for the ercp. I was and
probably still am at very high risk for AP via ercp but he was able to complete my ercp to include a large cut to my cbd, doing a balloon sweep of all the sludge and stones, then finished it off with placing a stent in my pancreatic duct in order to prevent post-ercp AP which was successful. YAHHHH!
Best Wishes to you in whomever you decide and a rule of thumb is to choose a doctor who does the ercp at least 1-2 X/week.
I’ve been doing some more research and come up with some useful stuff. It seems you can get IBS of the small intestine (it’s less frequent but still common) which can give all the symptoms we get.
I found a web site that went though all the signs and symptoms and it ticked all the boxes: worse with SSRIs, worse with opiates, worse with wheat bran, better with water, better with nitrates.
Seems fiber is the crux of the whole deal. I’m getting mixed reports but either insoluble is good and soluble bad, or vice versa.
So I’m using Normafib (which says it’s insoluble) and it seems to help. I just started a course of Rifaximin as well (had to have it shipped out from the USA as it’s not approved here – and man it’s not cheap without the govt subsidy). So I’ll let you know how it goes. So far no flare up with it.
I’m also looking more into high ejection fractions. There seems to be a definite association with IBS . So A might cause B or vice versa.
I’m having a surgical consult as there seem to be enough evidence that high ejection fractions warrant GB removal. I’m concerned that if it’s SOD it will make it worse – like many here. Unfortunately the ERCP manometry couldn’t test the SO and the doc thinks I should have the GB out before risking a second attempt at manometry – even if it’s just to rule it out as a cause.
I didn’t even get a touch of pancreatitus with both pancreatic ducts canulated so I’m not concerned with repeat ERCP – but I think he’s worried more that he simply won’t be able to get in again so it’s a wasted trip.
Hi Brett,
Nice to hear from you. Glad you’re being introduced to new & productive findings. Still doing good myself as long as I don’t overdo oils. Busy at this trauma center for car accidents ! I swear I feel like I’m working an ER some days ! Prior to their car accidents, 2 of my patients survived gunshots and multiple stabbings ! I bet it’s safer down under ?
Nymphaea
Brett,
I thought some of these doctors prescribed anti-depressants (ssri’s) to combat IBS. You’re saying they make it worse ? I take remeron, which is an SNRI. None of it seems to make a difference. I also have dicyclomine. I’m not sure what that does, not much of anything as far as I can tell. I assume you’re taking the Rifaximin to treat SIBO. Did you get a hydrogen breath test to determine if there was an infection ? Just curious. Don’t forget to take a good probiotic while you’re on it. Nymphaea mentioned Ursodiol in an earlier post. Is that the prescription Actigall ? Is it helpful in any way?
Yes Drex Actigall is Ursodial. And I think the other RX you were speaking of is Bentyl or Hydrosyomine ? OK the spelling has me ! Its the IBS drug. Didn’t do a damn thing for me either. I yelled at my doc and told her not to give me Peppermint candy again LOL ! Ok there were some explatives in there, but I wasn’t a medical professional yet, and I was so thin and sick ! 130 lbs @ 5′7″ ! Vicodin just to get out the door. Then the Vicodin would give me a migraine ’cause I was allergic to opiates and didn’t know it. Fun Times ! That was Fall 2005 ! I thought it would be my last Christmas ! Nobody could help and Nobody knew what was wrong !
Nymphaea,
How is the Cymbalta going ?
I’ve written on here not long ago, but it didn’t go throught. Sent all my records, which is a lot, to Dr. Cotton in SC. He will take my insurance. Now to see if he will see me. Even if he doesn’t see me till the spring, I have waited this long, 4 years now.
Ate granola this morning for breakfast, feel terrible now. Mid back feels like a sword is going through it. Does anyone feel like that?
Yes..it seems like high fiber foods really send me into lots of pain, like you describe. I had cereal last week and it did that to me. Being active seems to help me. I’ve learned that I cannot be horizontal after I eat. I have to either sit up or stand and move around for a while. You may want to try
Interesting Margie,
I find much the same. Some research has shown that different types of fiber have different effects. It seems insoluble fiber can really do a number on the gut – but soluble fiber helps.
I also find lying down is a problem.
I just don’t know if this points to an IBS diagnosis or not but I know I’m getting nowhere with IBS type interventions, diet etc.
Hi know what you mean. Laying flat is very difficult and it hurts most in the mornings when I wake up. But the IBS inerventions do nothing for me either!
Hey Guys,
I’ve been away awhile getting surgical opinions. I came across a wonderful doc who thinks the high GB ejection fraction may be the problem – but is non committal.
(I always thought the diarrhea and worsening with narcotics was a deal breaker regarding the gall bladder but a friend wrote and told me she had severe pain with narcotics, and diarrhea before having her GB out and now the symptoms are completely resolved. So I pushed ahead with the surgical consult)
This doc was fantastic. He listened to the difficultly I had because they couldn’t cannulate the CBD during the ERCP – so they couldn’t manometry test or do the sphincterotomy. He said no big deal when I take the GB out I can thread a wire down the cystic duct to the CBD and they’ll use it as a guide for the sphincterotomy – no problem we’ll do both at once.
I now have to decide if I want to put all my eggs in the GB diagnosis – or do a dual operation. If the GB removal doesn’t work then they may not be able to canulate the CBD later. But if I have the sphincterotomy on a healthy sphincter I may be setting myself up for reclosure issues down the tract – just the reports here show it’s very common. Tough call either way.
On a different note I just tried Rifaximin – the antibiotic they recommend for IBS – an expensive waste of time that I gave up after 5 days of progressive worsening. I then tried zofran – another IBS drug for nausea – an even more expensive waste of time.
But out of desperation I gave baclofen a try. So far it works even better than lyrica -well worth a look guys and it’s not very expensive. It doesn’t seem to leave me feeling out of it like lyrica does either.
The only problem is if you have oddi and remove the gallbladder, I have been told that it will make oddi worse.
It made mine worse….
Yes there’s evidence some people develop SOD as a result of gall bladder removal – as many as 10% by some reports. That’s why it’s called post choli syndrome by some.
In my case if they did both remove the GB and sphincterotomy the problem shouldn’t occur.
Brett,
I believe you have looked into studies regarding the probative value of HIDA scans for determining SOD. Have you seen any literature addressing HIDA scans with possible SOD findings when GB is intact? I am wondering if and how the presence of the GB impacts the result and/or interpretation of such result.
Thanks.
Michele A.
Hi Brett!
Would you mind sending me an email @ krisl1204@yahoo.com?
Thanks!
I was actually thinking the other day, that maybe in people who have had their gall bladders removed and still have pain and the other issues we have, the gallbladder was not the problem. The problem was SOD to begin with, only misdiagnosed as gallbladder because of a low ejection rate. IF there was an SOD problem couldn’t that cause a low ejection rate in a HIDA scan ? Removing the gallbladder just narrows the possibilities of the source of the problem and the true issue of SOD isn’t recognized until the gallbladder is removed and doesn’t improve the situation. Especially in people who don’t have stones.
Drex, I think you’re absolutely right. In my case, I had an ERCP this week and the doc found that my pancreatic duct was 2x the size it should have been. I’ve always believed my issues were more around the pancreas/SOD and my gallbladder that came out in 2002 was collateral damage.
Hey Michele,
The consensus seem to be a HIDA scan is of no value at all in predicting SOD – though many docs seem to think it is and common sense would dictate that a spasmed SO would reduce the flow and give a low ejection fraction.
My doc is the best in Australia – in one of his articles he says that HIDA scans have a 91% predictive value for SOD – and his associate said I couldn’t have SOD based on the HIDA scan results ;yet when I gave him the study that shows it’s useless – he agreed and said his research shows the same!!??.
I have one study that says SOD can be clearly shown on HIDA scan by first looking at the ejection fraction after morphine then using nitrates – which makes sense but wouldn’t help in type one and two.
My feeling is if the SO responds to CCK properly it will dilate and the ejection fraction will be normal – so a HIDA scan will only show SOD if there’s an abnormal response to CCK and this may not be present in all SOD.
Here’s the results of the study on HIDA scan and SOD – and my docs response in capitals (SOH is sphincter Oddi hypertension SOP is manometry, EF is ejection fraction on HIDA scan. PPV is positive predictive value) Note especially the last sentence:
Results Of the 93 patients with both HIDA EF and SOP measurements, 50 had abnormal EF (40 mmHg). Of the 43 patients with normal HIDA EF, 30 had SOH. The sensitivity was 49%, specificity 38%, PPV 58%, and NPV 30%. Eighty-six of the 93 patients returned
> for follow-up evaluation. Follow-up ranged from 0 to 99 months, with a mean of 26.4 months. Overall, 73 patients (85%) improved. Of the 46 with abnormal HIDA EF, 42 (91%) improved. Of the 40 patients with normal HIDA EF, 31 (77.5%) improved. The sensitivity was 57.7%, specificity 69.2%, PPV 91.3%, and NPV 22.5%.
Conclusion Although the PPV of abnormal HIDA EF is high, it is not much better than the clinical impression. The sensitivity and specificity are marginal. The NPV is poor. Based on the review of these 93 patients, HIDA EF is not reliable for identifying CAC. We recommend that patients with normal HIDA EF have additional testing or consultation before ruling out CAC. HIDA EF does not predict SOH.
> THESE RESULTS ARE VERY SIMILAR TO A SIMILAR STUDY WE PUBLISHED APPROX 20 YEARS
OR SO AGO.
Huh….????Then why tell me my SO is fine based on the HIDA scan?
Thanks Brett.
It still boggles my mind to see how widely the studies and opinions on this differ, and how doctors can hold onto their beliefs despite all evidence to the contrary (well, I guess that is not reserved for doctors only). I had thought you had come across studies showing that a negative finding of SOD on HIDA is meaningless; thanks for confirming it. Now, if your HIDA scan had showed possible SO but nothing abnormal about the GB, I wonder what your doctor would advise. It’s a tough call – not that the one facing you is any easier. Seems like doctors prefer to try GB removal first – odd as it is, that seems safer than ERCP. I wonder, however, what happens if someone with that finding who does undergo GB removal and continues to have the symptoms – i.e., does it make the initial “possible SOD” finding on prior HIDA scan more relevant, or do you start from scratch? I am not sure if the study means that negative HIDA scan cannot rule out SOD, or that even positive (or possible) SOD finding is unreliable.
In your case, based on the past posts I think I would do both – wasn’t your duct so tight that the doctor couldn’t even get in? I would have to think that is indicative of something with the duct that they could address at the same time. I don’t mean to sound as if I am saying this lightly – I have read enough stories here to know why you are concerned. Can they also check your pancreatic duct? I think you may have had that checked in the ERCP – I apologize for not remembering.
All of this is very interesting stuff that I wish none of us had to ponder.
Michele A.
Hi
Wow, who knew that there were other people with the same issues.
I had my gallbladder out in 1999, 3 months after I had a baby boy.
I had numerous problems after that, that sent me to the hospital every 6 months or so. Doctors had me do so many scopes, I lost count, and I am sure I have scar tissue all over.
I finally went to a GI doctor in Evanston , IL who told me i had SOD, I also saw a specialist in Milwaukee…
I have been on a medicine called Amytripltalyne ( oop on spelling) that has really controlled the pain.
I had the surgery 2 times and the muscle cut, and was suppose to be fine, but I am a lucky one who still had attacks.
I am curious if there is anything new known about this sucky disease?
I have started having Tyroid issues and it does relate to the medicine I am on for SOD….
Any news, any great doctors in ILLINOIS who know a lot about this??
OK De, yes we both have thyroid issues , I have Hashimoto’s along w/ 5 members of my family. Which is hypothyroidism. I’ve had it before most of my other “Stuff” ever started. How does it relate ? Well lets just say Hashimoto’s is an auto immune disease of the thyroid and with a break down in the immune system anything is possible, other than that the thyroid and pancreas are both endocrine glands. Best of luck in your continued research.
Nymphaea
I am in the same boat. I had hypothyroidism way before my GI problems started. Are they somehow linked? I have never even considered that? I wonder if men experience this also? Brett?
It’s an amazingly tough decision to make and most of it is down to guesses and hope. Yes most docs think it’s easier to take the GB out first.
Pros – high success rate and full cure if it works. Less risk than sphincterotomy – no pancreatitus.
Cons diarrhea, intolerance of fatty foods and worse SOD pain if it’s SOD. Can cause SOD if you didn’t have it to start with.
From the studies I’ve read since you should get right sided pain, worse with fatty foods and reproduced with CCK on HIDA scan. Some studies seem to say exactly this – some studies show no correlation.
My friend had right sided pain, intolerance of fatty foods – but diarrhea, and worse with morphine.
I can’t reconcile my symptoms with GB. If it’s a problem it should flare up with CCK and fatty foods. Yet it flares with morphines, codines and fiber. It definitely improves with baclofen and nitrates so it’s definitely a smooth muscle problem – but that’s the SO, GB and intestine.
The diagnosis the fits best is IBS of the small intestine but I just can’t see this level of prolonged pain and nausea from that and I’m wondering if combinations are possible – nothing in the research so far. But IBS is associated with increased GB ejection fraction in one study.
You can drive yourself mad trying to figure it all out. I’m going with a capsule endocscopy – $100o – to rule out things like SB diverticulitis. If nothing shows up I’ll go with the GB removal. I’m just not sure about the sphincterotomy.
I just read again recently that it has a very poor success rate in type 111. And you can get reflux up the duct once it’s cut causing ductal injury and inflammation – make sense really, you don’t put a sphincter where you don’t needed it.
I asked my doc to do a botox injection but he said it has a high risk of pancreatitus. All the research I have read says a lower risk. It’s just driving me crazy trying to get a doc who makes complete sense with what I have read.
My doc says when you cut the sphincter properly it releases tension on the pancreatic sphincter as well – so no need to stent. Some research agrees – most says you need to stent. Round and round you go.
Hi Brett,
I certainly do not envy you having to make that decision. During your last EUS, was your bile tested for evidence of sludge or stones? This may sound odd but I sort of wish that were the case so you’d have more of a clear cut answer on at least what to do about the GB. I feel almost lucky that I knew virtually nothing about this – from the time my issues began until my GB surgery, I knew nothing about SOD, which at least made the decision on the surgery easier. My GB was inflammed, so I suppose it was the right thing to do even if I am continuing to have the same issues.
I do know now that in III, there are studies showing low success and high complication rates. However, from reading the posts here and some other reading, I am not sure how much better types I and II fare.
I am scheduled to see a rheumatologist next week to see if I might have an underlying inflammatory condition that is causing the GB/SOD like issues as well as some other issues. Have you consulted with one? Do you have any other symptoms/issues that might suggest that?
In collecting my volumes of records to send to that office, I noticed something in a report from a HIDA scan predating my GB removal that seemed to indicate possible SOD – since have figured out that is not the case. If the rheumatologist is a dead end, I think I also am having the capsule endoscopy – really would like to avoid if I can (were you told about the prep?). Ugh.
I am sick of the round and round already and I am relatively new to this merry go round. Hardly can imagine what you’re feeling at this point.
Michele A.
My friend is a rheumatologist ( I though it was a Latin name for an interior decorator). I have all the HLAB antigent tests for rhuematoid factor as well as fecal calprotectin for Chrones and inflammatory bowel disease. I insisted on this early off.
The medical literature and studies doesn’t seem to be supported by the reality of patient reports. They claim a high success rate with sphincterotomy in type 1 and 11 and a 50% success rate with type 111. Yet the only 2 year follow up study found an 8% success rate in type 111 – near enough to zero.
As for reclosing and scarring over they tell you 10% in 10 years – but way more than that is reported here here and my doc told me to only have the SO cut if there’s unequivocal evidence – as she see a lot scar over – so much that they routinely use progressive stents to open them and do not recut after even a single reclosure. One thing I do know is it appear the pancreatic sphincter is way more prone to reclosure than the SO.
I don’t think a HIDA scan is of any value in diagnosing SOD. It sounds logical that it should but the studies don’t support it.
I imagine the prep for capsule endoscopy would be the same as the prep for colonoscopy – which I’ve had. You drink a gallon of what tastes like swimming pool water?
I am glad that you at least took care of the rheumatological route early on. I am not that convinced that there will be real answers for me, but enough evidence of something that it is worth a shot. I have had inflammatory bowel disease ruled out already.
I too have been frustrated by the conflicting reports – on the surface, when you start researching postcholycestomy syndrome (which is how I came to this), most of what you read is that if you do have SOD, you go in for one ERCP and that’s it, you are done, cured. As we all know, not the case.
At my post GB HIDA, the nuclear medicine fellow told me he thoought I had SOD, but was overruled by the attending, who said that what looked like spasming to the fellow was a typical, “normal” way that the SO acts after GB removal – basically trying to help take over the function. Had not heard of this before (or since, really). I guess yet another example of interpretation that has frustrated all of us.
Yes the capsule prep is similar to colonoscopy. Frankly I didn’t care about the, er, cleansing part as much as drinking 64 ounces of anything with Miralax in it! That made me sooo nauseous. Barely kept it down when doing the colonoscopy prep. I may take a Zofran before I start. Also if I do the capsule it will be from a Monday-Tuesday so that means the fun will be on Sunday with my kids around. That should be interesting.
We should do it on the same days!!
Michele A.
Brett, I understand and feel for you. I’m in a similar position. It can make you crazy trying to sort it out, and no one doctor says the same thing, even the well known ones. A top Oddi doc recommended I have my GB out but docs at Mayo said since I have some radiology consistent with oddi, it would make the SOD worse. In your sitution it is a terrible call to have to make.
Mayo doc said morhpine and codeine often make SOD act up, as does fiber (I’ve seen this myself). The sphincterotomy is dangerous no matter what anyone says. And what I found is that doctors often don’t tell patients that once you do it, many times it scars and you are sentenced to a life of repeat cuts and ERCPs.
I’m in limbo myself, so I do understand. Doing all that research will make your head spin. Just make sure you are comfortable with whatever decision you make and don’t let anyone push you into anything.
Thanks Margie,
I’d be interested to know what radiology they used to diagnose SOD? They only radiographic test I can think of that is thought (wrongly) to give any indication is a HIDA scan?
It does seem to me GB removal is a better gamble – but a big gamble. When it works it works well and there’s no chance of pancreatitus – when it doesn’t it makes things much worse. My doc recommended much the same. Seems to me though if the GB is squeezing out 96% all the time it must put more pressure on the SO.
There was one person here who definitely had type 111. She had the GB out and symptoms improved, but was still in pain – she had the SO cut and got complete resolution. So no matter what they say it can work in some people in type 111. I think the reason for the poor results is some up to 60% of people have pancreatic sphincter involvement – others have IBS or visceral hypersensitivity and other have GB issues.
I’m wondering how many failed sphincterotomies in type 111 actually have high ejection fractions undiagnosed.
There’s no doubt at all about morphine/ codeines etc. But here’s the rub – they’ll also flair up a sensitive gut and you can have narcotic bowel syndrome – so it’s not diagnostic.
I’d be very interested to know why they think fiber flare the SOD? This is the major issue for me that keeps me looking at IBS solutions but if there’s a clear link to SOD I’ll stop looking in that direction and go with my heart not my head.
I’ve had exacerbations and remission that make it confusing to tell if something really helps or not but so far I’m absolutely thrilled with baclofen – even better than lyrica and way better than Doxipin with less side effects. I’d recommend it for a trial for all of us. It’s cheap as well.
I had elevated pancreatic enzymes and a secretin mrcp which showed pancreas duct did not drain the way it was supposed to. The HIDA did not drain properly either. Did you have a secretin mrcp?
I have no idea why fiber aggravates. I was told that it does and I have experienced it myself. But I don’t know of research to show it. It may exist somewhere.
I’ll look into the Baclofen and see if they may prescribe for me. I wish there was something more I could add to help, but there seems to be so little to actually help people in our situation. But if you have not had the s-mrcp, I’d at least want that, but I’d ask your doctors first.
Hi, it is me, no one ha s commented on medicine yet, so I thought I would put it out there again.
I am desperate to fin dsomething to control the spasms. I had the”cut” and a stent put in and taken out, and was told that the opening closed up ( I am not sure what happens next) just repeat the scopes, the cutting the scarring??
I am deeply saddened reading about everyones issues, it is crazy! I was NEVER told I might have SOD when the took out my GB, and though I assume ( bad to do) that I really needed it out, after my major attack, I feel like I was so healthy before.
I never even had a doctor, before I had my GB out, now I have so many…
Does anyone have the spasm under control? I am not sure if I am crazy, but stress and my monthy period ( sorry guys) really effects the pain level ( anyone else)??
Thanks for any feedback, just need it to know I am not alone
De,
This is the third attempt at posting – one last try.
First some questions.
1. Did they have any positive tests to indicate the GB or did they just take a random shot?
2. Did they have any positive tests for SOD or was that just a random shot when it got worse with GB removal? I’m assuming you had no elevated enzymes or dilated duct or they wouldn’t have gone for GB removal first.
3. Did you get any pain relief with the ERCP sphincterotomy prior to reclosure.
4. Did you get any relief with the stenting – was it for reclosure or only to prevent pancreatitus at the first ERCP?
I’d recommend a trial of sub lingual nitrates for acute attacks and baclofen for long term antispasmodic. I’m not convinced you have SOD at all but it’s worth a try.
You may also want to consider continuously taking the pill to eliminate periods. There’s no physiological need to have them.
I am sorry, Did I miss you posting? ( it said third attempt) anyhow…
Yes, I had test to show I had gall stones, and had to get it out.
I am not sure I rememeber what difinitive test thet gave me to diagnois SOD, but I had so many….and I did see a specialist in Milwaukee who did confirm that is what I have. I also had rasied ensyemes every test I ever took….especially after an attack, my liver enzymes would go off the charts. I had a Manometry, and I also got a mild case of pancreatitis, so I know you say you are not convinnced I have SOD, but I sadly, I have it. I wish I didn’t.
I never got relief from a ERCP, the stenting seemed to be ok, but really the only relief I ever got was when I went on Amityptaline, at a very low dose ( .10) before that I tried Ursidol, Hycyomine and those did nothing….
I have never asked about Baclofen ( what is it)?
I can not take the pill, any hormones freak out my “area” completly, I have been off the pill for years. I could not handle any hormones, hence the pain gets much worse when I get my period.
Thank you for trying…and for your ideas.
Hi De,
I cannot give you any answers but I can share my experience with you that I have had and maybe that might help you. First of all you are definetly not alone. I know that sometimes it feels like it but there are alot of people out there with the same “issues”. That’s why this site is so great. I have been dealing with this for 9 years now. I have had 6 ERCP’s and I just had my second stent put in. This Dr I have now is doing progressive stenting..putting a small one in for 3 months, then a larger one in for 3 more months, and so on for a year. I have had the sphincter cut 3 times then the first stent put in on the 3rd time. I have also been wondering about the scar tissue building up and causing more damage but I asked my GI dr how many times you can cut it without scar tissue and he just said you can cut it as many times as you need to. So I am going back in March for this stent to come out and a larger one put in for 3 more months, He said if this doesn’t work then he will refer me to a surgeon and he will just “fillet it open” were his words. I believe that is called a sphinterplasty?
I told my old GI dr that my pain always got worse when I was having my menstrual cycle and he said that although he hadn’t heard of that it is very possible because hormones affect alot of things in our body. He also said that stress definetly plays a part in this also. That is why I have decided to change my job to a less stressful one and take a huge decrease in pay but I feel like I need to take care of my health.
I’m not sure what you have tried as far as medicine? Have you tried Levsin (hyoscamine)? That really worked well for me but gave me a headache which I will take any day over the pain. There are several smooth muscle relaxers out there to try. What have you tried?
Karen:
Thank you for your kind reply, I so appreciate it!
I have never heard of the small stent and then the larger one, you poor thing, it just sucks! every time I have a procedure, and I have twighlight or anything to put me out, I have an attack when I come to ( weird, right)?? The muscle just goes crazy!
I wish you luck ( please send me your email, so we can keep in touch < I would love to check in with you after your procdure.
The fillet thing…scary, I think that is what they wanted to do to me 4 years ago before I went on amitryptaline…I am sure you are nervous about it…I would like to know more about it.
My gynecologist said it is very possible to have extra pain ( also because of the hormones)…
Good for you to be brave and change your job, it must have been very difficult.
I have tried hyoscamine, and it really did nothing for me. I have not used muscle relaxors besides what I am on? Do you know what else works?
Thanks so much
Dede
Hi De and Margie!
This is Kris. I don’t think we’ve communicated before. I’m hoping that you would be willing to send me your email addresses to : krisl1204@yahoo.com. I’ll look forward to hearing from both of you!
Kris
Hi
Thank you! I will email you
I am driving 12 hours to see Dr. Cotton is Charleston, South Carolina in 2 weeks. First he is doing a MRCP depending what he finds or don’t find he may do an ERCP the next day. I have had an ERCP 3 years ago and it did not help. My pain is somewhat being control by medicine. I just hope whatever he does, it gets no worse than now. I would like to be told if I still have SOD or is this something else. The other Drs. says it’s something else, so what then?
Hi De,
Cymbalta is working for me 100% after 2 spincterotomies (minor & major papilla). It also took away my migraines and my Fibromyalgia along with neuropathy. Now I went on it because I found out that clinical trials had started on this for SOD. No GI will prescribe this for you, so you have to go to your regular doc.(It helps if you have one of the aforementioned issues or depression, because right now that’s all its lisenced to treat. Now don’t kid yourself, this “magic bullet” comes jam packed with a host of risks, but in my case, it cleared out a whole medice cabinet and that’s a lot less toll on my liver. So, the choice is yours, if after your research, you decide to give this a try, & you don’t have any of the other afflictions, come down w/ depression suddenly . . . .real fast !
Nymphaea
My GI Dr. in Baltimore mention Cymbalta a few years back. Might have to become a little depressed, which I think he thought I was. This SOD will make you be depressed!
Nymph,
There’s a lot of Docs who think SOD – especially type 111 is psychosomatic – and studies showing increased somatization in type 111 don’t help – giving docs an excuse to write off failures as nut cases.
I came across an older study where the doc was saying peptic ulcers were all psychosomatic, and pointed to things like reduced pain under sedation to prove it was ll in the mind and he said much the same about SOD and hyperkinetic GB.
Of course later research found it was helicobacter and this guy now looks like an idiot but the mind set is still there.
I’m glad cymbalta works so well for some – for me all SSRIs are a complete disaster and this is the case for most IBS D sufferers as well. This is clearly a complex issue with no clear solution.
Too funny!
Well, I will ask my doctor who I am seeing in a few weeks about Cymbalta ( I am one of those people who has a relaly hard time with medicine and it’s effects).
I do not have nay of those conditions, but I would try almost anything on the bad days!
What clinical trials? Can I read about it?
Thanks
ABOVE REPLY/
I meant **really hard time, I typed relaly ( sorry)
Robin,
It all hinges on the type. Sorry if you’ve said this before but I can’t keep track of everybody.
Did you have any positive tests – elevated enzymes dilated ducts prior to the ERCP.
Have you every had manometry?
Hi Brett!
It’s Kris. I found your email address from an older post on this blog. I just sent you an email to that address from my gmail email address. Please let me know if you receive it. I’ll look forward to hearing from you!
Thanks!
Kris
Yes Brett, I had elevated enzymes when I still had my gallbladder. That’s when the Dr. who removed my gallbadder thought I had SOD. He then sent me to a GI, who then said I would have to go to the “City”, because he would not touch me if it was SOD. I went to a GI at University of Md and he did a ERCP and manometry. He said my presure was so high, he did the test twice. He is also the same Doc who say that this might not work, that is doesn’t work in some patients. Worked for a few weeks, then more pain. I called him and he said it couldn’t be SOD because he fixed that problem. Then I really felt crazy, alone and hopeless. This Was the same guy who told me IT MIGHT NOT WORK! Did he forget he told me this?? I didn’t. Since then, 3 years ago, I have been to many Drs. who say, they don’t know what my problem is. I go to a pain management Dr. and I’m on Nortripyline, Tramadol and Levsin. Still have pain everyday, be I can live like this, not the other way and never want to live like that again.
What do the other doctor say it is???
Good Luck!!
Hi
May I ask what medicine is controlling the pain?
I’ll make this a general reply.
If you have elevated enzymes the research seems to show you have a good chance of success with sphincterotomy. So if it doesn’t work for you that’s very bad luck.
I’m not sure as to why. DR Toulli did mention that there are some cases that don’t respond to sphincterotomy but didn’t elaborate as to why, only that their may be a way to tell.
It seems some doc believe that elevated pressures in type 111 on manometry are a marker for a general motility disorder with all the sphincters, gut and GB. But typically these patients don’t have elevated enzymes.
If I had to guess here I’d say the problems in cases with elevated enzymes that fail to respond was with the pancreatic sphincter or both and they cut the SO only. Though my doc here says if done properly, cutting the SO releases the pressure on the pancreatic duct???
I keep coming back to a trial of botox before cutting but 2 Docs now have told me it has a high rate of pancreatitus – yet the research articles I have say the opposite???
My Doc seems to think progressive stenting is the best option for reclosing SO. Some research I have suggests a risk of ductal scarring. The open sphincteroplasty is a possibility but it’s not a fun proceedure. I hear you’re on an intravenous feed for 8 days afterward.
Forgive me Brett – I don’t remember – have you had elevated enzymes? My doctor has thought about motility disorder in my case, partly because of reaction to hot/cold and because of large amounts of fluid in stomach on endoscopy. Do you have other indications?
What are the criteria for small bowel IBS/disorder?
Question for you and anyone who happens to read this – do you ever get similar pain to the URQ on the left? Lately, after prolonged periods of attacks, my right side gets to the point where it feels like I have been punched in the ribs. Last night that feeling developed on the left side (and I had brief stabbing pains in the ULQ late last week and was left with the general “ick” feeling there too). If you or anyone else has experienced this or has any thoughts, I would love to hear about it. As far as I know to date, I don’t have pancreatic issues.
Thanks.
Michele A.
No Michele – no elevated enzymes or any positive test really. (Unless you count divisum, diverticuli and hiatus hernia)
I get a lot of gurgling and contraction after eating and pain on deep pressure in a wide variety of areas.
The typical pain – and the one that seem to reproduce my symptoms is central and about an inch or two down from the sternum. The gall bladder is further right than this but the cystic duct is about here.
Problem is when it’s acting up I cal feel a lump and roll over it – it hurts when I hit the lump only. The lump can extend to the left side a bit as well. I also get similar painful lumps elsewhere lower.
Given the flares with fiber etc this seem more suggestive of a motility disorder to me. But all the IBS meds, antibiotics and diets don’t work at all.
Here’s some recent stuff I found on motility disorders:
Drugs such as benzodiazepines, lithium salts, laxatives, and codeine cause secondary stypsis. The latter can produce narcotic bowel syndrome, which is usually observed in patients who abuse opiates for chronic pain.
IBS, the more commonly diagnosed disorder of intestinal motility, has been considered a disease of the colon for decades, but research on GI motility has demonstrated that underlying motility disturbances can occur in the small bowel.
Thanks, Brett. For what it’s worth, I get that same pain that you describe in the center, and come to think of it I may have felt something like a lump from time to time. I also occasionally have had pain in the LRQ that somehow seems related. Of course, I also get URQ pain that can be right central or more off to the side. Now, as I’ve posted above, I am dealing with bad ULQ pain that goes to the back – last night I was unable to lay either on my back or my left side. I sound like a full-on train wreck!
I believe you can get SOD symptoms as far left as center, so maybe that is indeed what you are experiencing. I have been told that SOD pain to the left is atypical, but as we know, that all can be subject to differing interpretations, or SOD can lead to other issues/complications that could present in the left.
When I began this long journey, I did have IBS symptoms as well, which probiotics and a round of GI tract targeted antibiotics cleared up nicely. That is part of the reason I think I still have something else entirely going on – the “something else” that the meds did not help. I suspect you do as well, as you have not responded to those meds.
Is it possible that hiatal hernia could be causing some of the symptoms? Have you tried treatment for that? Honestly, I am not sure what treatment there is besides smaller, more frequent meals, and I think you are way past something that simple …
I know nothing about sphincteroplasty, do you ever have a painfree life. I haven’t had blood work done in a while. I do remember a few years back I had an attack and went to the ER. They did blood work and the Dr. said my enzymes where only elevated very little. I give up. I just know a few weeks ago I tried to come off of my Nortripyaline, because of weight gain. My general Dr. help wean me off. I got down to 10mg and remembered how bad the pain was without all my meds. I won’t try that any time soon.
Hi Robin! I did send a reply through the email notification of the posts I received, but it doesn’t seem to have posted. Anyway, my brother had a sphincteroplasty about 8 years ago after having an acute pancreatitis attack that resulted in a pseudocyst that was the size of a basketball. They did the sphincteroplasty on him vs. the standard ERCP because in spite of using a longer ensdoscope, they couldn’t reach his ducts due to his long torso. Ultimately, he has fared better than the rest of us in terms of not having daily pain. He does have flare-ups, but none that have landed him in the hospital for over 6 years. He is able to control all of this primarily through diet. Like me, he also has pancreas divisum. Maybe the sphincteroplasty is the ultimate, even though Brett is right about the difficult recovery. I will definitely be asking the question of Dr. Freeman when I see him for my ERCP on the 16th, as I don’t understand the difference in the procedures. My belief was that the net results was the same, just another way of addressing it. Hang in there!
Kris
There’s quite a big difference between sphincterotomy and sphicteroplasty.
In the – otomy – the just use an electro cautery wire on an endoscope to cut through the sphincter and burn at the same time to prevent bleeding. Mt doc tells me they think the heat might be an issue in re-closure and pancreatitis but it’s crucial to stop bleeding – and even then they sometime need injections .
In the – plasty – they open you right up and cut through the duodenum to access the ampulla (It’s inside the duodenem attached to the wall). If I recall the sphincter is completely resected and the duct is externalized though a new opening. I’m not sure if the pancreatic duct is also involved but I can’t see a way to avoid it with this procedure. There was a diagram of how it was done on the John Hopkins web site but I’ve lost it.
Thank you so much for clarifying the difference! I really thought the net result was the same, just a different method of getting there. Now I wonder what determines the decision to do the sphinteroplasty vs, the sphincterotomy?
Sphincterotomy is the procedure of choice these days because you don’t need to be opened up and spend days on an IV feed.
It has pretty much replaced sphincteroplasty. Depending on where you read though the plasty does seem to have a higher success rate and a much lower chance of closure.
They tend to use sphincteroplasty now when sphincterotomy leads to continued reclosure though my doc believes serial stenting is preferable.
Thanks for infor, Kris. At this point I’ll glad to be truly diagnosed with something. I can’t believe this is going on 4 years now. Every day of life pain, some days worse then other lke last week when I ate granola. In the mornings I feel almost normal, but around 10 or 11am the pain begans for me.If not for this SOD support group I would have lost my mind by now. I’m just a regular woman, been working at an Elem school for 26 years. Always been active and in shape. I have gain about 40lbs or so after on Elavil, now I take Nortripyaline. I just hope one day soon I can go off this medicine. I am thankful for it. At least I can go to work and do everyday things, not like I used to, but somewhat.
It breaks my heart to hear comments like this because it’s the same for all of us! Mine began about 3 years ago. Like you, I’m pretty good in the am. until the same time, around 10:00 or 11:00 when the pain sets in. I also cannot eat high fiber foods like granola. I had brown rice a couple of months ago and I’ll never do that again. Raw fruits and vegetables, wheat bread and processed foods are my other no-no’s. Does the Nortriptyline help? I tried it once on this journey and it did nothing. Neither has Neurontin. I’ve been fortunate enough to not gain weight from the medications. I’ve lost weight because I don’t eat much. That has been a welcome side effect, as I could lose 10 more lbs! I used to be much more active as well. I know find strenuous exercise to be another trigger for increased pain.
Would you mind sending me a private email @ krisl1204@yahoo.com? I’d love to hear from you!
Kris
It’s good to read your case Robin. It sounds like you have very definite signs of SOD with elevated enzymes and you get worse with fiber/granola raw fruit etc. Do you get diarrhea as well?
One of my doc thinks the worsening with fiber is a definite sign it’s not SOD. Reading you reports and others I’m not so sure now.
Kris, I tried twice to send you a Email I’ll do it here. The Dr. who did my ERCP put me on Elavil 25mg after my pain came back. I have been up to 75mg, but did not feel like myself, too speedy. After many different Dr. I was sent to a pain management Dr. She switched my Elavil to Nortripyline because of weight gain, still haven’t lost the weight. She also put me on 50mg of Tramadol, and Levsin to stop the heart attack like pains I have, spasms. I’m suppose to take the Tramadol every 6hr. Some days I take 1-3 all day depending on the pain. My daughter is a RN and says I should take it every 6hr even if I don’t have pain to keep the pain from coming. I just don’t want to get so depended on meds. I take the Levsin in the morning before I eat. Again I’m suppose to take it 4 times a day, before meals and at bedtime, but only take it once. If I don’t take it, I feel like something move under me breast area. If I eat hotdogs it moves a little, meds or not. Raw veg and some fruits hurt also. One day I was at the mall and drank a tropical smoothie and was in pain bad. Just taking about this stuff helps, Thanks for asking questions, Robin
Hi Robin! I wonder why it didn’t go through. I’ll put it in here again. krisl1204@yahoo.com. Oh, the dreaded hotdogs!
I can’t eat them, either! I know others have had problems with really cold beverages, as I did once. I’ve tried the Levsin, but it didn’t really seem to do much. Unfortunately, not much does seem to help. Having the support of everyone here does! 
Does Oddi trigger heart attack type pain?
Margie, I think it can but I think if you are asking this question you should go to the ER!! Don’t mess around with this. If it’s nothing related to your heart, let the medical team tell you that. Really, if you have any concern about chest pain, go straight to the ER.
Don’t worry. I’m fine. Not having that now. I’ve been evaluated up one side and down the other (twice on all heart tests). I’m just curious if oddi is related to angina in any way. All started around the same time. I saw Robin mention heart attack type pain and was just curious.
I think a lot of GI disorders can manifest with chest pain. Would not be surprised if SOD were one of them. Sorry I can’ t be of more help on that one, but I am glad you are OK.
Margie:
I can only answer for me, but YES!!! totally
Hi Robin:
I am on Amitriptalyne and feel like it made me gain weight too…I was hoping there was something out there that would not effec me that way ( so, you see no weight loss on Nortiptyline)?? I think they were talking about switching me, but do you think you gained weight on that? ugh, so frustrating!!
I too feel like i am having a heart attack when the pain comes, and for some reason it come son super fast and super strong.
What is Tramadol ( I guess I could google it, but I am trying to figure out all the meds people take and how doctors decide what is right for ech of us)..
Thanks
Dede
I still don’t know what those spasms are about. I do know I don’t have them when on Levsin. I really thought I was dieing. One night I was in bed and it started and my husband ran and got one of the Levsin and it stopped. It’s the worse pain I even had in my life. The first time it happened I went to the ER. The only thing showed up in bloodwork was enzymes were a very little elevated. I hope to find out more about all this when I go to the specialist in SC on the 16th.
That is interesting. My cardiologist said that the spasms of IBS, oddi, and angina are all related. You were the first person I saw mention the pain, so I was curious if anyone knew more about it. Thanks for sharing that.
Wow, I never heard of those things being related. After I had 2 of the attacks, I did go see a cardiologist and had a stress test, which was fine. The first one I had, I just knew I was gone. My pain management Dr thought it was angina, heart Dr said no.
I never heard of it either, so I wondered if anyone knew anything about it. The philosophy is that if you have a spasm problem in one area, it is not out of the realm to consider you would have spasms in other areas. I thought it was interesting but never have seen anything about it.
Here’s the web site showing how sphincteroplasty is performed. It looks like the entire papilla is removed and new openings fashioned.
http://sod-stinks.blogspot.com/2007/04/transduodenal-sphincteroplasty.html
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