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.
Karen,
My liver enzymes are elevated only after an attack. They are usually normal, unless I have an attack, and then the numbers are higher. That’s why I can be either Type I or Type II. He also said that individuals who have had their GB’s removed often have dilation of the common bile duct anyway, but even the ER doctor noticed thought that was unusual.
Either way, I am going for it. I have my pre-op call in 15 minutes!
Karen,
My liver enzymes are elevated only after an attack. They are usually normal, unless I have an attack, and then the numbers are higher. That’s why I can be either Type I or Type II. He also said that individuals who have had their GB’s removed often have dilation of the common bile duct anyway, but even the ER doctor noticed thought that was unusual.
Either way, I am going for it. I have my pre-op call in 15 minutes!
Amy, same here. The only time I’ve had abnormal blood work was when it was taken 48 hours after an attack. I was waiting until I was still uncomfortable weeks after the attack to go the doctor, and by then the “evidence” was already gone.
I never had the ERCP. Thankfully, I’ve only had a handful of attacks and I can manage just fine in between them. I guess that makes me somewhere between a Type II and Type III.
Someone else was asking about the EPISOD study. I had a colleague who knows these things review the clinicaltrials.gov listing (I work for a cancer advocacy organization, for those who aren’t familiar with the rest of this site). For starters, it reads more like a Phase 1 or 2 than a Phase 3 (because it’s so limited). We wrote to the PIs (investigators) with very targeted questions last summer and never heard a response back.
Hey Amy T.
When you feel up to it please post and let us know how your ERCP went today..I have been thinking about you and will be praying that all is well. Hopefully we’ll hear from you soon.
Does anyone have pain after exersise? Yesterday I took a long walk with my husband and my pug and today I am a lot of pain under my breast and right through my back. I used to walk everyday before this SOD started three years ago. I have gain around 40lbs since on Elavil, now Nortripaline. I would love to start walking again to see if I could lost this weight. I felt a little better yesterday, but not now.
Robin- I am in Maryland too and finally after 3 years of constant pain and attacks I am seeing a Johns Hopkins specialist with this SOD. After reading about everyone’s reaction post op I have issues with having it done even one time. My gallbladder was removed in 06 operating at 12% and then a month later I was sick again. I have to say though I haven’t seen much talk about people on real painkillers. I have been through all the levsin, bentyl, cholestramine to stop production of bile, etc. I have been on hydrocodone 10-500 for awhile now and it does mute the pain quite a bit so that I can function at least. I just had two nuclear medicine tests done at Hopkins, and it seems my doctor is actually heading clinical trials for this at Hopkins. My normal GI trained the Hopkins guy and referred me to him. I go back April 7th for the results, but I don’t think I’m heading for surgery anytime soon after reading that most everyone needs it more than once…. My liver enzymes were never elevated I just have attacks and constant pain. Anyone else have IBS or another condition coinciding with this one?
I had the ERCP done at The University of MD Medical center and Dr. Goldberg said that my pressures were very high and he cut and stented my sphincter. About a week or so later I was in pain again. After a year after taking Elavil for pain, I went for a second appenion. Dr. Goldberg said the sphinteromany might not work. So that is when I went to Johns Hopkins to see Dr. Jagganaff(not spelled correctly) he put me through test and everything came back ok. He said he didn’t think I had SOD. So what is it?? I have pain everyday of life. I haven’t missed one day of work this school year. My general Dr. sent me to pain management, and thank GOD. Dr. Jagganaff said, last year when I saw him last I had stress. I have a great life. I have 4 kids, 3 of them grown, 1 14 year old at home, and lots of grandchildren. My husband has been wonderful through this whole painful last 3 years. I have a great job, beautiful home and the cutest pug you ever did see. I teach Sunday school at a Methodist church and really lead a great life. I have got so used to the pain it has just become part of my life. I have put off getting in touch with Dr. Jaggernaff. It really does make me stressed when a Dr. says he doesn’t know what is wrong with me. I had my gallbladder out over 3 years ago. All the test showed my gallbladder looked fine and nothing was wrong with it. My enzymes were high and they finally took it out. The Dr. who did the operation said my gallbladder was hanging by a thread and not even functioning,and my liver was wrapped around it. No test showed that. I have really lost faith in test and Dr.
Thanks for the well wishes from everyone.
My ERCP and sphincterotomy was 3/23/09. I was very nervous about the risk of pancreatitis going in, but figured, I’ll know more after the procedure.
After 45-50 minutes under, I came out in a LOT of pain. Like the SOD “attack” pain that lasts for minutes and then subsides, then comes back. My doctor,not expecting this reaction, sent me to have a CT scan. Though he did not suspect pacreatitis or a perforation, he did it as a precaution. It was neither, thankfully, but the pain persisted. My liver and pancreatic enzymes were slightly elevated, so they admitted me to the hospital “for observation and pain management.” 24 hours later, I was feeling a lot better, and was able to go home. I still had some pain, but NOT in the region where the pain was before, but a feeling of extreme heartburn and nausea. I figured, I can manage these symptoms for a while, it was like a prolonged stomach flu, with feelings of nausea (and almost throwing up) and very loose stools. I took my pain meds to manage, and used Pepto and Tums constantly. After about 5 days, I was feeling a lot better, but still trepidacious about food, eating only small, bland meals.
9 days later and I feel even better, with minor heartburn and the ability to eat a bit more.
The doctor could not explain the pain (and seemed almost shocked that I would have any) but the SOD was definitely a Type I. I have interesting photos of before and after, showing the bile flowing, but I am relieved to know it. The nurses were more understanding about the pain, considering that “the procedure is evasive, and when you alter how something is working, you don’t know how your body will react.” So, I sense that my body is adjusting to the new flow of bile from the SOD, which caused the pain, nausea and heartburn. It may take a little longer to feel 100%, but the SOD pain is definitely gone, and that’s a great outcome for me.
I am no longer taking pain meds, but still take the Carafate and Prevacid. I use the Tums sparingly, and I am still eating light meals.
I hope to continue on a path of feeling better each day, but knowing what you’re dealing with was half the battle. I have no regrets about the ERCP and spincterotomy.
Amy, Thank God you are better!! I’m so happy for you and will pray for you to become stronger and better everyday. How long did you have SOD? Where did you have your procedure? Please keep us informed.
Amy..I am glad to hear that you are doing well. I have been thinking about you! I didn’t think that you would regret having the procedure done. I know that the first two I had done helped me out alot. I was pain free for 2 years. Heres hoping that you have the same results. I know that I can handle things alot better if I know what is causing the symptoms. I hope everyone else is doing well and looking forward to spring!! A little sunshine can do wonders for the soul!!
Has anyone had a successful sphincterectomy…where the pain never comes back. I had an ERCP with sphincterectomy last July for the SOD and my doctor told me that there is only a 1% chance every 10 years that it will come back. I have been pain free since the surgery, but after reading all of the blogs…it makes me nervous that being pain free is going to be short lived and it contradicts what my doctor is saying.
I do figure though, that most people who are coming onto this blog are people who have not had any success with the SOD treatments and that is why everyone is on here looking for answers. So maybe people who have had a successful outcome are not commenting on here.
Has anyone had a successful sphincterectomy with no more pain ever? Just wondering.
Hi Mary, I often wonder the same thing. Very few on the support groups I log on has been pain free. Please tell me what Dr. did your procedure? My Dr. doesn’t want to do it again. I had the Sphincterectomy two years ago and had no pain for only a month or two. Now I’m on pain management, I can live like this but would rather be like I used to be and NO meds! I live in Md, on the eastern shore. But would travel anywhere for a good and understanding Dr.
Hi all,
I am in similiar circumstances as all of you. I had my gall bladder removed 7 months ago and then the pain returned. My Dr had scheduled an ERCP for last week, but after doing a lot of research I cancelled it. My Dr was very dismissive of my concerns about the complications of ERCP. I am seeing another GI Dr tomorrow and hope for less agressive diagnostic tests at least to start. I too keep hoping to hear of successful long term results of ERCP and a few of you have had some positive outcomes at least short term. Thanks for the info. There is one thing I might offer that helped me post cholecystectomy. Other friends have had success with it as well. I now take digestive enzymes before every meal (Mega-Zyme), and the diarrhea finally stopped! Be careful however not to buy the enzymes with ox bile in them. We sure do not need more bile! It made me ill. I’ll let you guys know if anything interesting turns up tomorrow. I share your feelings of being alone so was very happy to find this site.
I live in the San Jose, CA area. My doctor was amazing! His name is Dr. Harsha Vittal and he specialized in SOD during med. school. I would recommend him to anyone. Phenomenal Doctor. I had seen multiple doctors before him to no avail. Within minutes of meeting with him, he finally properly diagnosed me. It took 9 months to find the right doctor but I finally did. Good luck in your search. I have been pain free since last July (knock on wood)…and he tells me that I am a success story. It just scares me seeing all these posts explaining how the pain comes back even after they had a sphincterectomy. I am hoping that this does not happen to me.
Hi Mary, I am so glad you are now painfree. I think when school(work) is out for the summer, I will get back to trying to find another Dr. Right now I’m doing better because of the Tramadol so I haven’t been anywhere in a while. I really get discourged when a go to a new Dr. At first they act like they understand and can help you but after the test come back and nothing shows they think it’s in your head. I’ m not giving up but taking a break untill I have time off. Thank for the hope of someday being like you and a success story. How long did you have SOD?
Robin- I had SOD for about 9 months. I had my gallbladder out and then the symptoms got even worse. Horribly worse. It took many doctors and many tests and even more hospital visits before I met Dr. Vittal who diagnosed me and treated me for it. I had the sphincterectomy in July and (knock on wood) have been doing great since then. I worry though because when I read on this blog, I see that other people have been painfree for awhile after having had a sphincterectomy and then it all comes back. But the only thing I can do is enjoy each day I have and hope that mine does not return. I keep reading the blogs though to keep up-to-date on what people are going through and what medical treatments people are going through. I too was at the pit of despair, extremely depressed, extremely anxious, and just ready to give up…but the only thing you can do is hang in there. NOTHING lasts forever. Nothing. That was my mantra that I would tell myself. It was the only thing that made me feel a bit calmer when I was at my wits end.
Tramadol helped me a lot as well when I was in pain. So…good luck and keep us updated. I keep everyone on here in my prayers.
I’m a 27 year old female and I would like to share my story with you. Up until a year ago I led a perfectly healthy life with very little in the way of illness. Last May I unexpectedly collapsed at work with severe abdominal pain, a central like a tightening around the upper right side of my body that persisted like no pain I had ever had before. I was admitted to hospital with suspected gallstones or possible ulcer. An ultrasound and endoscopy ruled out the above diagnoses but I was still left with horrendous pain and abnormal liver function tests. Over the next week or so I improved and was discharged with a follow up endoscopic ultrasound scan (EUS) appointment to look for microcrystals or sludge in my biliary tree.
Sadly before I could have this test I was again admitted to hospital following another abdominal collapse. I had exactly the same pain as the first time and sure enough after 48 hours my liver function tests became derranged. In addition this time, and indeed accompanying every episode of pain since, I have awful loose stools and cramping with virtually everything I try to eat, despite being prescribed Creon.
I underwent an EUS and CT scan during this admission, both of which showed the presence of pancreas divisum, an inherited abnormality which can lead to pancreatitis. I was therefore discharged after a month in hospital with this as my diagnosis.
I was subsequently admitted a third and fourth time to hospital over the following months with the same symptoms when finally somebody suggested that I may have type 2 SOD as well-finally an answer to these awful symptoms-little did I realise at the time what this was going to mean for me.
In light of my increased risk of pancreatitis due to my inherited abnormality, it was decided that manometry to confirm the diagnosis was unwise and over the next few months I was given Botox injections – done endoscopically into my sphincter to try and paralyse the muscle and hence relieve the pain. This had a great initial effect but the coverage was patchy, I was getting little more than 3-4 weeks relief from them and after the third trial of Botox and another hospital admission it was decided that the only real way forward – to potentially offer me longer term relief- was to proceed with manometry and sphincterotomy if the pressure is raised, despite the high risk of pancreatitis in my case.
I am due to have this done the day after tomorrow, a year from my first episode, and having read and learned so much from everybody’s postings here I wanted to share my story with you. I desperately hope to have the success that some of you have had with sphincterotomy and I hope to join you all in sharing support/advice/experiences of SOD.
Denise,
Wow..thanks for sharing your experiences with this awful disease. I must say that you have had worse experiences than I have encountered. As you have probably read that I have had 4 ERCP’s with 2 spincterotomies and stents put in. I have had 2 years in between the first 2 spincterotomies absolutely pain free. It was great! I sincerely hope that you can have some relief from your pain as well. I will be praying for you that all goes well on Wednesday and that you are home soon. God speed to you and welcome to our site!
Hello, I’d like to introduce myself to the board as well. My name is Becca (in my mid 30’s) and I’ve been suffering with pain on my right side for little over a year now. Like many other’s stories that I’ve read on here, I had my gallbladder out over 8 years ago (which took 8 months to diagnose-whole other story) and did not have any other issues in that area until last year. Have had all the other tests (blood, CT’s, MRI’s, colonoscopies, endoscopes, etc) and gone to many dr’s and have had a few hospital stays as well. At one point they were considering exploratory surgery, but the surgeon told me that he doesn’t operate on a “pain” presentation/symptoms only. Fast forward to today and I’m going to be getting a ERCP with manometry this coming Monday (which I’m a bit nervous about). They suspect SOD, but aren’t sure until they do this test. I’m hoping that this procedure will go well with little to no complications and that I can get back to a life without constant pain and worry. Just wanted to say a big thank you to all that have posted here, because your experiences and knowledge has been a godsend to me.
I was diagnosed with SOD this past December and they did the ERCP….put in two stents. However I ended up with pancreatitis which meant a short hospital stay, a week later they removed the stents and I felt fantastic with absolutely no pain…however just recently I started developing pain again (quite not so severe) but enough to ruin my days. I have had to blood test to check my Lypase and Amylase levels and they are normal. I am still new with this disease. But, why are my blood levels normal but I still have the pain. As some of the other people I wake up fine but the pain starts up later in the day…other days the pain wakes me up. If anyone out there can help me I would very much appreciate it. I put a call into the doctor today asking for any reasoning for this. He will return my call tomorrow.
Thank you
Wow, It is great to know that I am not losing my mind! I had my gallbladder removed in 1993 and everthing was fine until 2006. That is when all my pain began and is still continuing. I have been hospitalized twice and been through 3 differnt gastro doctors. I just started seeing the 4th one this week and hopefully she will figure out what is going on. In hte last 3 years I have has so many cat scans and mir’s that I should glow in the dark, but every test keeps coming back normal. I am scheduled for another EDG on April 22 and the doctor is testing for Celiac and the H. Ployic Bacteria. If those test come back normal then she has suggested sending me to a specialist for an ERCP, so here I set at midnight because I can’t sleep due to the pain investigating SOD. I was hoping that an ERCP would be an easy procedure and give me answers that would solve my problem, now I AM SCARED! The pain in my upper right quardant has gotten so bad that I am currently on a medical leave from work, so I have to go through with the testing . I can’t pinpoint what makes it worse, all I can say is it is constant and I am so tired of suffering. I was diagnosed with autoimmune hepatitis in 2006 after a liver biopsy and liver function panel showed my enyzmes high. I am now wondering if the elavated liver enyzmes are just a symptom of SOD.
I have been having back and rib cage pain for nine months now. I had an upper GI done in January and was told it showed nothing. Then in March my Gen. Dr sent me for an MRI, said it was the nerves in my back and sent me to a neuro surgeon. Had a nerve block on the right side of my back and am still in pain in rib cage area and back. I have an appointment at a pain management clinic but after esearching this last night, I made an appointment back with my GI dr for Monday. I sure hope I can get a diagnois right away without having to endure more pain. I also live between Baton Rouge and New Orleans. Any help you can give me would be appreciated. I have been taking Tramadol for nine months now daily. What dr in this area are you seeing
Thanks for the kind words Robin! I was relooking over some of the posts yesterday and I have some of the exact same symptoms as you. I used to drink sodas like they were going out of style, but can’t touch them now without a bad reaction. Also stear clear of any kind of caffeine (chocolate, cokes, coffee, etc) which is no fun either. I’ve change alot of my diet which has helped some, but definitely hasn’t taken away all the pain. If you’d like, I will update you all on how the procedure went. Take care!
After having intermittant severe adbominal pain for 20 years and every test imaginable (all normal) I finally was hospitalised for a recent severe bout that was unremitting. Turns out the bout was triggered first by a misguided prescription for an SSRI (effexor). I don’t suffer from depression when not in severe pain and SSRIs apparently causes severe gastric hypersensitivity and triggers SOD – if susceptable. The pain onset following effexor comes on within hours and is very acute and reliable and anybody with SOD should check immediately if they are taking an SSRI – prozac, effexor, zoloft, paxil, celexa etc are a few. Welbutrin/Zyban should be ok as these work on dopamine not seratonin which is the problem.
I then had and endoscope that used pethadine for analgesia and took duodenal biopsies which triggered the pain further so I started taking codine for the pain – when that failed I went on endone – a type of oral morphine. When I got in the hospital they put me on morphine as well – all are well known triggers and even used in invetsigations to trigger SO spasm in testing. I had to go off all pain meds except acetomenophen and an anticholinergic called buscopan which helps a little .
The doc I saw at the hospital is a senior lecturer in GI and diagnosed SOD billary dyskinesia with IBS in a few minutes and put me on a sublingual nitro spray. This is the same stuff they use to treat angina as it is a powerful smooth muscle relaxant and relaxes the sphincter oddi as well. The pain relief was miraculous and immediate and likely saved my life as I had previously not eaten or slept for 7 days and had lost 12 kilos in the preceeding weeks. I used it far more than allowed – 2 spray’s every 6 hours whereas I used it almost hourly, and would not recommend this to others – you’ll get major headaches – but the headache pain was nothing compared to the abdominal pain and I figured it was a fair swap.
I would recommend anybody with SOD and no contrindications to nitrate meds (or using viagra) to try sub lingual nitro spray. It seems to work better and faster than the calcium channel blockers etc used for the same purpose.
They also put me on Doxepin which is a tricyclic antidepressant. The dosage is 10mg – not the 200 mg they use for depression so the side effects are negligent. Apparantly it moderates the stimulus to the SO and chemically denervates pain output in a method not yet fully understood and takes 4 to 6 weeks to really kick in.
From what I’m told sphincterotomy should be a last resort. The function of the SO is to prevent reflux from the duodeneum back up the common duct (I wonder if antacids, proton pump inhibitors etc would reduce this?). Sphincerotomy reduces SO tone by splitting the muscle allowing reflux and causes pancreatitus in 15% of cases. I’m not sure how stinting reduces this problem as stents hold the duct open so…? But I hear pancreatitus is worse than SOD. What we need is something that reduces the sphincter tone but doesn’t destroy it completely. It may be possible that controlled doses of botox will serve this function and it’s worth investigating before trying sphincterotomy. I’m current researching this on the net and it seems to yield results in 50% of cases but I can’t find any info regarding th incidence of pancreatitus with botox.
I’ve determine the following most likely triggers for myself: Caffine, morphine, endone, pethadine, codine, all SSRIs, alcohol and larger meals regardless of the content. Unfortunately exercising with weights appears to be a reliable trigger for me as well at this stage.
I have been put on the fodmap diet (it’s on the web) as well but I’m not convinced this has much bearing on SOD and is more for those with IBS. It does appear that lumina distention of the gut does trigger pain and possibly SOD as duodenal irritation may be a trigger. Fructose malabsorption leading to bacterial activity, gas, gut distention and pain may be a factor – hence avoiding fructose and sodas etc may be beneficial. It’s too early for me to comment as yet.
I’m no expert but do have a medical background and have done a bit of research so if I can help further please write. I’m in my second week now and doing much better and may even live again. I hope sharing this info may help some others avoid what was the worst weeks of my life.
As an aside I have also found a TENS machine applied to the abdomen with heat is effective in reducing pain and there is some evidence it may help the SO relax.
Hey there Brett,
I was thinking as I was reading your post that you must have some medical background! I work in a pharmacy so I understand all of the drug content of your post. The only thing I did not understand was the part about the lumina distention of the gut may trigger pain. Can you explain further? When I first started out with this “condition” I was using levsin sublingually and that worked very well but again caused headaches but they were nothing compared to the SOD pain as you said. My docter has suggested maybe trying botox injections but I am fearful of that.
I also agree that large meals will trigger pain and also not eating for long periods of time also will surely bring on an attack for me. Unfortunately with my schedule I go about 6-7 hours without a meal so I try to snack in between customers/phones..etc..
I am on Gabapentin and have found that is helping and also take tramadol during the day to help ease the pain. If I have a bad attack then I take percocet and that usually takes care of it.
Thanks for posting and making yourself availabe for questions. I have learned alot from this group. It is nice to have a place to go to compare symptoms and treatments.
One question I have for you Brett or anyone else that might know is if scar tissue plays a role in making the pain worse. I have had 3 spincterotomies with stent placement on the last one. I know that to continue cutting the sphincter muscle cannot be good.
Hey Karen,
I’m not a GI specialist so I’m not much ahead of lay folks on this topic – but I can follow the research. Nobody is sure what causes the SO to spasm and there are several types some involving motor dysfunction, others might be congenital constrictions. There’s also a second sphincter in the pancreatic duct which can be problematic – so it’s far from simple. We do know that gall bladder removal can interfere with nervous stimulus to the SO – but that the SO will continue to function without innervation ie in liver transplants.
Scar tissue definitely apperas to be a problem especially if the sphincterotomy (ECRP BTW is just the approach method using endoscope not the sphincter cutting) they can do several tests at the time of ECRP such as mamometry which measures sphincter pressure and is probably the best test available.
It seems to be the terminal portion of the small intestine where undigested fructose sits. Bacteria then digest the fructose and this causes gas which distends the gut causing pain and dihorrea. Antibiotics can be effective in the short term so we know bacteria digesting fructose is the problme. I’m not convinced it causes SOD and my GI specialist got a bit evasive when I asked him directly.
Gabapentin is also called neurontin or Lyceria in Australia. It’s origionally an epilipsy med but has been found to have a sedentary effect on nerves. It’s now often prescribed for nerve root irritation in things like sciatica etc.
Interesting – I did consider asking my specialist about this med but he seem to think the sublingual nitrates and Doxepin where the most effective .
Tramadol or Ultram is a good med that works well for pain relief with less problems with addiction than opiates. I have been a bit worried about trying it because it does have an SSRI effect and I am 100% certain the effexor caused my last serious attack. I have had patients who reported severe stomach pain follwing taking it so I just can’t risk it at this stage. I know there are those on the forum here trying cymbalta without problems. It’s an SSRI as well so it may not be all SSRI’s. The specialist felt that since the SSRI flared me up, and SSRIs can cause gut hypersensitivity, that I must have a IBS component as he felt the SSRIs do not cause SOD. I know the pain was billary and not gut so I can only conclude that in some cases gut irritation can cause SOD – or SSRI directly irritate the SO – but not all ?
Continued cutting of the SO in the presence of scarring is not a good idea IMHO. I think botox is well worth a try as it preserves the sphincter. As far as I can tell it lasts about 6 months. In theory the muscle should atrophy somewhat from not contracting for prolonged periods (this certainly occurs with peripheral mucle – I can’t be sure with smooth muscle under ANS control) so at some point the tone of the sphincter should eventually come down to a painfree level without allowing reflux and pancreatitis. Even if you need an injection every 6 months I think this is a better option and I’m researching it a lot more as I think it will be the direction I go in if this reoccurs. I can find a thing on the incidence of pancreatitis with botox injection so I’d definitely ask before proceeding.
I have some good articles on the subject I can post here but they are kind of long and technical. The do outline the corret proceedure right to the type of catheters and technique that should be used to reduce the risk of pancreatitis to 4%. If any body’s interested I could post them here maybe in sections?
opps forget the article posting – the link is given in the introduction post by Judy. Seem we both found the same thing. The second link still works the first one doesn’t.
BTW I also have a long and technical article on the fodmaps diet and the role of fructose in IBS. The research now is 100% certain that fructose is the cause of most functional gut problems and IBS. Humans just aren’t that good at uptaking fructose – especially if it’s present on it’s own as in many sweetners and soda drinks (it’s used because it’s cheeper than sucrose – it’s listed as FOS or high fructose corn syrup etc).
We can uptake fructose better if it’s present with glucose – such as in fruits like oranges, but not things like pears. It’s really quite complex.
I’ll see if I can scan the article or find it online if anybody’s interested. The Fodmaps website covers some of it.
Thanks Karen. The procedure is tomorrow (Monday) and I’m still a bit nervous about the whole thing. Guess I’m worried that either there will be complications, lots of pain (more than I’m already used to) or that it won’t really help at all. But at the same time, I’m cautiously optimistic that maybe it will beneficial in the end. Thanks for the support and well wishes and I’ll let you all know what happens when I can!
Does anyone have information on doctors that specialize in performing ERCP in Southeast Louisiana. I am between Baton Rouge and New Orleans. I just started seeing a new Gastro doctor and she thinks I may have SOD, I have to have a regular endo on April 22 (3rd one in the last 3 years), if she doesn’t find anything she is going to refer me to a specialist for an ERCP and I am researching trying to find one that is experienced. Any suggestions would be greatly appreciated.
I haven’t written in awhile but I stopped seeing my gastro doc because he couldn’t get past the ‘heartburn’ diagnosis. I figured the next attack I had, I would go to the ER and let them do their tests *during* the time I needed to know what was going on. Well I’d put that off until two nights ago when I got an attack from eating organic raw brocolli and carrots. My husband (who has finally conceded that this isn’t in my head) got me there in a hurry but like most ERs, you wait and wait and wait… Apparently, they move alittle faster when you blow chunks all over the exam room floor because the doc immediately started me on an IV of anti-nausea and pain killer drugs. The pain killer made me so dizzy that I thought I was going to throw up again but the antinausea helped calm down my stomach. Surprisingly, the doctor actually listened to me when I talked to him about SOD (unlike any other doc so far) but he said he couldn’t do the ERCP “because it was nighttime and the hospital never does this procedure at night”. Has anyone else heard this reason? He did refer me to a local group that supposedly are *the* docs to go to for SOD in the area. I’ll be calling my primary doc tomorrow for a referral. After several hours in the ER, they released me…and shortly after removing the IV, the pain came back and I continued tossing my cookies (or broccoli and carrots).
Today, I’ve noticed that I have a large amount of pressure right below my ribs and that I can’t take a deep breath without feeling very uncomfortable. I read thru some of the posts above and some have noted that they feel like a large ball is lodged under their ribs. That’s a very good description of what this feels like. I’ve never had this before so I didn’t know if it was because my diaphragm is just sore from heaving all Friday night and a bit more this morning or if it’s something else. Either way, it’s REALLY an uncomfortable and restricting feeling.
Vicki,
I can understand that the hospital doesn’t do the ERCP at night. You really want a specialist to do it and I doubt that they have one on “standby” at night. There are alot of things that could happen if the dr isn’t experienced with that procedure and they aren’t something you want to experience. Good Luck to you. I hope these new Docs can help you. SOD is a hard diagnosis to come to and I would definetly follow up with the gastro dr.
My daughter is 16 years old. On December 15, 2008 she experienced her first attack. She had her gallbladder taken out January 29, 2009. Had relief for 1 week and the pain was back. After doctor after doctor telling her that it was functional pain. About 3 months has passed and finally her GI doctor thinks she has Sphincter of Oddi Dysfunction. Apparently this is a clinical trial has proved that Nitoglycren taken three times a day 5-10 minutes before meals will help relax the muscles. Right now she is in the hospital and we are waiting to see if we can find an adult GI doctor to perform the ercp since we don’t have any peds GI doctors approved to do the procedure. After reading many postings I am wondering if I should put her through that. Anyone with suggestions please email me at deedeeraya@aol.com
DeeDee I prefer to post here as it may help others as well.
The sub lingual nitro works for about 70% of cases that are clearly SO dysfunction with no complications like papillary stenosis of chronic pancreatitus. Anticholinergic meds like Buscopan are supposed to work by blocking the transmitter substance – acetolcholine – that transmitts the signals to the SO to contract. I have had no success with them at all. Botox BTW works the same way but completely eradicates the signals so the muscle simply cannot contract. I would like to see surgery that severes the motor nerve developed so the sphincter remains intact but this is a way off yet.
Sublingual nitro has side effects as it relaxes ALL smooth muscle so you get coronary muscle dilating and a large drop in BP. I almost passed out yesterday on standing as I have good BP and lowering it further is a problem. You also get headaches but other than this I can find no long term problems with it’s use other than the muscles can accomodate to the drug in some people. There are also calcium channel blockers like Nefidipine that work in a similar way to the nitro spay and are effective in about 50% of cases. I am considering trying these as well.
Regarding ercp and sphincetrotomy the risk of pancreatitus is high and the problems with pancreatitus are enormous and life threatening. I would certainly hold off this intervention untill you’ve trail all conservative options. It seems prophylactic (preventative ) stenting of the pancreatic duct reduces the incidence but I’m not sure yet how. I suspect the long sent helps prevent duodenal contents refluxing up the duct but I’m not sure what happens after it is removed. Either way I think I’d insist on this if I had the surgery – and I’d hold off the surgery as a last resort.
There are problems with sphincterotomy as the SO can scar over and continue to spasm post op. It seems botox is as effective as sphincterotomy and is very predictive of sphincterotomy success if the botox wears off later – ie if botox works there’s a high probability sphincterotomy will as well. I’m not sure of the incidence of pancreatitis post botox but the fact it’s not mentioned in the literature may be indicative of low incidence.
If sphincterotpmy fails there is sphincteroplasty. This is an open proceedure where the sphincter is completely removed and a new sphincter refashioned from the wall of the duodenium.
So my recommended course of action would be 1. trial the sublingual or oral nitrates recommended. 2. add nifidipine if unsuccessful or a more prolonged effect is needed 3. add Doxipin 10mg and wait 6 weeks for full effect. 4.Impliment the fodmaps diet 5. if unsuccessful trial botox. 5. if pain returns only then try ercp and sphincterotomy6. if pain returns trial open sphincteroplasty.
You’ll see the intervention goes from most conservative to most invasive and the risk of bad side effects etc goes up as well.
While SOM (mamometry testing) is the gold standard for diagnosis my feeling is effective treatment is the best diagnostic tool. SOM carries a high risk of pancreatitus just to find out if a treatment will possibly work.
I have identified the following triggers for myself and these may be helpful. 1. codine, morphine, pethadine etc 2. SSRIs like prozac 3. any large meal4. any large irritant like large vitamin, fish oil etc pills – even high fibre5. stressfull weight exercise. 6. Alcohol especially rum.
It’s good that you understand your daughter’s pain and don’t write it off as psychosomatic. I had a great many doctors do this with me. I have walked 2 miles with a 3 broken ribs and did fine but I can tell you this pain is like nothing you can imagine and it turned me into a whimpering baby after 3 days seriously considering suicide. Help your daughter in any way you can.
Here’s a website with some good info on the surgeries. I hope this helps. http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease4&organ=3&disease=12&lang_id=1
hoping to help– the oddi can easily be opened by drinking a small amount
of water (say, an ounce) fully saturated with epsom salts. this is best
done on an empty stomach (say, upon awakening) and then avoiding food for
about an hour. morning coffee is still fine, even advisable. stay near a restroom.
this knowledge comes from a merk manual of 1950’s vintage and the method
is safe, effective and inexpensive. i have used it myself owing to bilary flow
difficulties.
(note that epsom salts dissolve in water slowly, so you might try putting a
large amount of the salts in a small amount of water, shaking the container,
and then letting it sit in the refrigerator overnight. adding a flavoring, such
as a packet of “crystal light” brand flavor crystals, will help with the taste. also, epsom salts (a smooth muscle relaxant, thus oddi relaxant, with the chemical name of magnesium sulfate), are available at any super-maket or
pharmacy for about a dollar.
Brett,
From day one I have never thought my daughters problems where psychosomatic, but conviencing the doctors has been another story. Very early into this after she had a ultra sound, CT, MRCP, with all normal results, her GI doctor and her pediatrician tried to covenience me that this was a psychological disorder. The other tests were a small bowel follow through which only showed the barium moving very slow through the small bowel and normal through the remainder. The results stated possible ileus. Her endoscopy results stated chronic inflamation of the stomach. When she had her gallbladder removed the performed a biopsy and the results were chronic cholecystitis. The only other thing that was noticed during surgery was that she had a massive amount of adhesions surrounding the liver area and down her side. All of her blood work has come back normal with the exception of her liver enzymes and those were I think 80. I think for about 3 months they were elevated but no higher that 80.
I have been to the Childrens Hospital of Peoria, Methodist Medical Center of Peoria, the Childrens Hospital of Iowa, and the Childrens Hospital of St. Louis, several trips to the emergency room and talked to every doctor along the way that I could get to listen.
I refused to believe that this is psychosomatic and recieved a referral to Iowa. The only thest they performed there was the MRCP and then he told me that her pediatrician was right that it is psychosomatic because she had been tested up one side and down the other.
I then asked for a referral to Barnes is St. Louis which is know for finding the rare things that other doctors cannot diagnosis. I spent about 15 minutes with this doctor and he didn’t even examine my daughter. He just asked if my daughter was depressed, has she been depressed, and does depression run in the family. I expressed my concerns about her inability to eat causing significant weight loss, 27 lbs in four months. She is now under a 100lbs. He just asked me if she was purging. He told me that if I was there for him to find some rare disorder I was mistaken, because there was not one to be found.
We went home I had a follow up appointment with her GI so in a last ditch effort I took her back to see him and requested more testing. Since she had had diarrhea for three months I wanted a stool test, which came back normal. I also wanted a colonoscopy. He agreed to do those tests but asked me to agree to accept that this is psychosomatic if both test come back normal. My reply was “lets just run the tests”. Before we could get to the colonoscopy she ended up in the hospital.
Three days ago I still had the two of them telling me that this is psychological and that I should have listened to them. I agreed to have Chelsea seen by a child psychologist not because I have changed my mind but because her physical condition is critical at this point and I want her doctors to stop focusing on the pyschologial aspect and focus on her medical condition. The child psychologist reported to the doctors that this is NOT psychologial but medical. I don’t know how much this has changed their opinion.
A new GI doctor has been brought on board becasue her peds GI cannot perform the ERCP. So far he has been great. He has ordered three tests. A MRI, Hydascan, and a blood test checking for IBS. So far all normal results, still awaiting the blood results. Chelsea is still taking the Nitro 0.3 mg three times a day before meals. Too early to tell if this is helping. At this point her diagonosis has not been confirmed. Tomorrow she is scheduled to have botox injected into the spinchter. This seems to be a better way of possibly confirming the diagnosis. If it works then I have been told that it would bring three months of relief before I have to decide about the ERCP. Her symptoms are exactly what everyone has experienced. If this is not Sphincter of Oddi then I don’t know what is next.
This has been a very emotional road. It is has been very frustrating when the doctors focus on psychological instead of medical because they cannot find the answer and give up. My daughter has basically starved for four months due to the inability to eat and been denied her pain medication for the severe pain. If only any of these doctors could be in her shoes or any of yours who have suffered through this.
I appreciate everyone who takes the time to post your comments and knowledge.
I can not even imagine what you are going through as a mother. Go with your instincts. You KNOW your daughter and know that is not in her head….don’t give up on her. She needs you as her advocate. I am keeping you in my prayers and for your sake hope that what she has is SOD so that at least there can be a diagnosis. Not knowing is the hardest thing. Once you know what it is, you can deal with it. What are her exact symptoms again? Feel free to email me at anytime. I also suffered for months, saw many doctors, and had over 12 hospital visits before I was diagnosed properly. Tell your daughter to hang in there. Nothing is forever. She will be normal again. marycsaca@yahoo.com
Chelsea has all of the same symptoms as most everyone who has commented on this site.
Constant stabbing pain increased by activity and food.
Pain on left side under rib cage
HI Everyone,
Its been a long time since I last wrote. I think I was just so frustrated with all of this SOD we go thru I just couldn’t deal with. My last visit to the pain clinic he wanted to put a permenant pain pump in. He was unwilling to even discuss anything else. So I just quite all thing s medical. I have had several bad episodes but as long as I’m extra careful with everything I eat and do I can at least most of the time I can do my daily thing now. I’v done all the medications, ECRP, spincteropmies, the natural healing supplements, liver cleanses, accupuncture, special water even crazy things hoping that by some chance something might help. But here I am still being careful with no real relif. I am almost ready to go back to my primary care but i am afraid of what ever she might say. This stuff is crazy. I just try to deal with it a day at a time. Good luck to everyone
Many thanks for the Epsoms salts call – I’ll look into it. I have found just drinking water can help, but the specialist wrote that off as a behaviour I have developed because I believed it helped. Well the relief can be rapid and significant if I get 2 or 3 glasses of water down quickly – so yeah sure I developed that behaviour. I would caution against the coffee call though – though I’ve had no immediate problems with it caffine is know to increase gastric motility and I was warned against it.
Diagnosis of abdominal pain is difficult and so many different diseases cause similar symptoms. Phenomena like referred pain make an exact diagnosis difficult and we still lack the ability to “see” pain – bang your leg on the table and take an MRI and you’ll see nothing . I was quickly diagnosed with duodenal ulcers, IBS, hiatus hernia and several other things before they figured it out – only when the tests can back negative and they kept looking did I get an answer. I told the Docs the symptoms don’t match their diagnosis but Docs are taught to think common things are common because they are common. Ie when you hear hoofbeats think horses not zebras. So when the common things don’t show up on tests they start to think something’s not quite right.
Doctors do get psychosomatic patients, it’s real and so is hypochondria and it’s very annoying. After having a few cases a month you do start to hear warning bells when patient’s present with unusual symptoms that fail to respond to any treatment and all the tests are negative.
It sounds to me Dee Dee like your daughter has more than one problem and complications like this can really make it tough. The nitrate spays should give very rapid and noticable relief. The effect is profound and if the nitrate meds haven’t worked it might be worthwhile investigating the spary and stop wasting time .
If the spray doesn’t work immediately you need to look elsewhere (I found it takes more than the 2 sprays every 6 hours they recommend though). Possibilities include papillary stenosis – where the duct opening is narrowed from birth or acquired from irritation and scarring. I think SOM testing is definitely indicated in you daughter’s case (with proper proceedure the risk of pancreatitus is low) and a definitive diagnosis made before proceeding with any intervention – even botox.They may need to test the pancreatic sphincter as well – I think SOD and pancreatic sphincter dysfn are almost 50/50 in some studies.
My feeling is if the nitrate spary doesn’t work then the boxtox probably won’t as well – ie the SO opening is constricted and they’ll need to look at alternative treatments.
There are cases where the SO doesn’t respond to nitrates when it locks in spasm and this causes elevated enzymes on blood tests so it’s a possibility as well. Also cases with chronic pancreatitus down’t respond to nitrates as well.
It does sound like there’s a high probability of SO dysfunction and it’s very common post gall bladder removal – it just doesn’t look like a simple case.
Went on the boardwalk today and made a big mistake. I ate caramel popcorn before I ate my lunch. I have been in pain all day. mostly my right side of my back. Why do I keep doing this to myself? Does popcorn bother anyone else? Also, today I got a letter from John’s Hopkins telling me my GI Dr. is going to Mercy Hospital in Baltimore. I need to hurry and send him an Email to let him know whats going on with me. I haven’t been too happy with him. Maybe a new GI could be more careing and listen better than him. We shall see. Hope everyone had a good day, it is beautiful in Maryland on the Eastern Shore. Robin
Interesting Robin – yep I have a problem with too much pop corn – or fibre really. One of the Docs diagnosed me wrongly with diverticulitis so I started taking more fibre including pop corn and bran. I had one of the worst attacks ever – lasted days.
My feeling is duodenal irritation is a definite trigger and there is a known neural connection between the duodeneum and the SO – fibre is a known irritant so what irritate the duodeneum could set off SO spasm.
I’m not saying eliminate fibre but it’s worth monitoring the effects of fibre and keeping it under a symptomatic dose if vulnerable.
While I don’t get immediate benefit from antacid style meds like proton pump inhibitors etc (nexuim, prilosec etc) the do seem to be of some benefit long term and are worth adding if you have any reflux at all.
Unfortunately this is likely the first port of call for most docs and if it helps investigation and further treatment is likley to stop there
Brett, I know what you mean about fiber. Because of Meds and their side affects, I started taking fiber drinks like fibercon. That was real painful. I love fresh vegetables, but broccoli hurts, too. I was feeling ok when on the way home from work(elem school) I had the worst attack ever. A kid in the class had a birthday and I ate a small ,bite size cupcake. The frosting was made from shortening and sugar. I really thought I was having a heartattack and dieing. Now I’m taking Levsin for the spasms and haven’t had one in a while. If I skip a few days taking Levsin I can feel something move in the middle of my body. I shakes my whole body when this happens.
Chelsea had the botox injection on Friday around 2 o’clock in the afternoon. She was released from the hospital around 6 o’clock in the evening. Upon leaving the hospital her pain level was a 4. It has not been below a 5 with pain meds since this began. I found that to be encouraging.
Saturday she woke up and her pain level was a 6, but had not had any pain meds for 12 hours. After she took her pain meds it was back down to a 4.
She woke up today and her pain level was a 4 after not taking pain meds for 12 hours. After she took her pain med it was down to a 3.
It looks like this is going to work. Her doctor said it would take 3 days to know if it was going to work. Today she is going shopping and to get a manicure and pedicure. She looks so much better. It still seems to irritate her URQ when she eats, but not as bad.
My questions are to anyone who has had the botox injection or knowledge of:
How long did it take for the botox to work for you?
How long did it last?
Did food still irritate your URQ?
How many times can they inject botox before you have to do the ERCP?
My wife has been struggling with the same symptoms as many as you for over a year now. We have been through ALOT. If you have a common illness, Dr’s, for the most part can get you on the right track. If you have something that they’re not familiar with or it’s out of their exerptise, then you’re screwed.
Now, I’ll share some of our struggle since 2008. My wife is 33 years old, have one child (13 years old), and otherwise is healthy.
Symptoms/Issue(s): Daily Pressure/Pain behind breastbone into mid back, pressure in esophagus, bloating, nausea, and pain causing her to bend forward.
Prior Diagnosis from over 8 Dr’s: IBS, Esophageal spasms, GERD, pulled muscle in the back, costal chondritis, Posture, General Pain, Nerve Receptors, Gallbladder, and Sphincter of ODDI.
I also want to comment on internet boards and feedback. Don’t let them get you skewed in one direction or the other because much of the feedback is biased. When a person is finally “Fixed” they go on and enjoy the quality of life, if they continue to struggle, you see their stories here, on the internet.
Prior Surgeries:
• Laparoscopic Hysterectomy on Jan 2007 (Ovaries Remain)
• Gallbladder Removed in Feb 2009
Procedures:
• Upper GI Scope
• Lower GI Scope
• 3 Probe Manometry (Per Dr Baig)
• 9 Probe Manometry (Per Dr. Murray)
• Various blood work
• Stress Test (Mayo)
• Echo Cardiogram (Mayo)
• CT Scan with Barium (Thief River Falls)
• Colonoscopy (Thief River Falls)
• Lower Abdominal Scan (Thief River Falls)
• Ultrasound and MRI of back (Thief River Falls)
• Barium Enema (Thief River Falls)
• Anorectal Manometry
• Endoscopic Ultrasound x 2
• Chest X-Ray
• EKG
• MRCP
• Sphincterotmy
Dr’s are so quick to give a diagnosis it’s not even funny. They want to put you on medication and call it a day. I have to strongly suggest that you first find out WHAT is causing the pain and have them prove it before you do anything. I wished I would’ve known that from the beginning because some of these meds put her through hell and NONE of them worked.
After my wife’s galbladder was removed the pain went from a 8-10 to a 4-6 so we knew we were close and in the right area. The general Dr. referred us to another GI specialist because he was stumped.
Last week we made the week long trip to visit with the GI Dr and he was great. He recoginized that we’ve ruled out basically everything and am looking for closure. He did acknowledge the pancreas risk amongst others but said with the proper care and knowledge this procedure COULD fix her. He diagnosed her as Type III SOD, meaning that she has a 50 to 65% chance of curing it. He aslo told me that many, many of these procedures are done incorrectly by inexperienced Dr’s and unfortunately that’s when problems set in. He personally does on average about 400 of these a year!!
It’s now been 4 days since her sphincerotomy and she is doing better. Pain is still around a 3 or 4 but she believes it’s from the gas. He said that time-will-tell her if this was the fix and expected about 2 full weeks to see what the conclusion was.
I/We WILL NOT give up until we know what’s going on and will keep my updates here with all of you.
I can’t believe that I happened upon this website. Excuse the length of this comment, but I have been in pain since August of 2008 (short compared to most of you all). I went to have surgery on ovarian cysts (no prior history) and started to have excructiating pain under my ribs on the right side. My doctor, prior to taking me into surgery, asked about it. I did not have an answer because it had just begun the day prior.
They brought in a general surgeon to look at the gall bladder and said it looked inflamed, but chose to leave it alone. 3 weeks to the day later, and after multiple tests on the gall bladder indicated nothing wrong, I was in so much pain that I ended up in the ER. Next day, despite no test showing anything, my dr. decided to remove the gall bladder because he believed it could not be anything else. Came out of surgery and felt well. Went home, 3 weeks later, another attack. This time, it kept getting worse. By November, 2008, I was back in the ER. This time, the ER dr. asks me how many ERs I had been to (insinuating I was shopping pain meds).
They brought in my surgeon from the Gallbladder removal who said it was not a result of his surgery and would not admit me back in hospital. Another dr. decided to admit. 6 days later, doped up on morphine, percocet and everything under the sun, puking my guts up, etc. they tell me they think it is Sphinter of Oddi Dysfunction and refer me to another dr (specialist). They also inform me that the procedure to measure the pressure and hopefully fix the problem has a high risk of pancreatitis. Don’t think my luck is too good at this point and pain had subsided, so I took my Vicoden and antispasmodic meds like a good girl. 3 weeks later (seeing a pattern here), pain is back and I decide to get more meds, thinking they were the reason I was better. The hospital GI dr. tells my pharmacy to tell me to get my own dr.
I call the specialist and they get me in right away. We decide to do the ERCP and despite the manometry machine being broken, they will at least splice the muscle since I was presenting with classic symptoms of this dysfunction. I come out of the procedure and almost immediately know it did not work. My pain, unlike some, has been everyday, all day. I don’t eat but 1 meal a day at night. That way, if it hurts too much, I am at home and not wincing in pain in front of employees and customers.
My dr. tells me that the procedure does not always work and sometimes they have to go back and do a more aggressive cut to fix the problem. He wants me to wait and see. In the meantime, more tests for inflammation, etc. All are normal. the only test that has ever shown anything abnormal were the liver enzyme levels tested in November when I was in the hospital for 6 days.
After trying Amytriptolene, and waking up 2 days later to find bruises down both legs from my hips to my knees on the outside of each leg (the most frightening thing I have ever seen) and phoning my doctor to tell him about it, I go back to see him hoping we are going to do the more aggresive cut. He proceeds to tell me that I need to see either a behavioral specialist (it’s in my head and I am somehow associating eating with a bad thing, so I have fabricated this pain to keep me from eating) or a skeletal /muscular specialist because maybe when I eat, my ribs expand and it is painful. (Of course, the pain begins within 2-3 bites of beginning the meal- so not sure how that could be the case. I don’t even eat enough to fill my stomach) How insulting.
I sat there in complete disbelief and frustration because I thought I had finally found someone who knew I really had a problem. I am home today because I am in so much pain that I can barely move. I was up all night screaming in pain right behind my ribs where my gall bladder once was and going through to my back and up betweeen my shoulder blades. I dont’ know what I ate last night that could have done it, but based on what i have found, bananas, grapes, brocolli, soup, meat, bread, water (yes, even water sometimes), etc., etc, etc. everything hurts all the time. I never put a bite of food in my mouth that won’t hurt. There are definitely things that hurt worse than others, but rarely can I eat without pain. I wish my pain would go away. there are definitely times of less pain, but it is always there.
If anyone knows of someone who can provide relief, even if I have to go out of the states, I will do it. My quality of life is horrible and I don’t even enjoy eating with my family. I do not have weight issues, have always been healthy, and since August 2008 have hated this. I am depressed and frustrated and sorry to ramble but desparate to find some relief. I know this is what is wrong with me and am willing to go anywhere to make it better.
Sandra, I really feel for you. I know what you are going through. If you read some of my earlier notes you will see what I mean. I know the worst of it all is how the Drs. treat you thinking it’s in your head and you are stress. You damn right I’m stress!!!
When I first seen a surgetabout my gallbladder, which was 3 years ago now, he looked at my husband and said your wife’s body is telling her she has had enough. I work at an Elem. school and have for almost 25 years. I’m 49 years old. I work with special needs 4,5 and 6 year olds. I love my job. I play with kids all day. After he said this to my husband in front of me, I started crying. I was in pain and nobody believed me. Then from blood work the next week he knew something was wrong. He took my gallbladder after being in pain for 8 months. My gallbladder was wrapped around my liver and hanging by a thread, as he said in the report. I will never forget how I was treated. Even after the ERCP and sphincteromty the Drs. say they fixed my problem. No they did not!! The only reason I go to work everyday and can cope is because of the pain management Dr. my general Dr. sent me to. My John’s Hopkins GI does not know I’m going. I would not want to be living if not for Tramadol, Nortripaline and Levsin. I still have pain everyday but I can get by. I think we all need to get together and go on Dr. Phil with a panel of GI specialist to get answers and to listen to us. You are not alone. We are here if nothing else we will listen.
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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Karen,
My liver enzymes are elevated only after an attack. They are usually normal, unless I have an attack, and then the numbers are higher. That’s why I can be either Type I or Type II. He also said that individuals who have had their GB’s removed often have dilation of the common bile duct anyway, but even the ER doctor noticed thought that was unusual.
Either way, I am going for it. I have my pre-op call in 15 minutes!
Karen,
My liver enzymes are elevated only after an attack. They are usually normal, unless I have an attack, and then the numbers are higher. That’s why I can be either Type I or Type II. He also said that individuals who have had their GB’s removed often have dilation of the common bile duct anyway, but even the ER doctor noticed thought that was unusual.
Either way, I am going for it. I have my pre-op call in 15 minutes!
Amy, same here. The only time I’ve had abnormal blood work was when it was taken 48 hours after an attack. I was waiting until I was still uncomfortable weeks after the attack to go the doctor, and by then the “evidence” was already gone.
I never had the ERCP. Thankfully, I’ve only had a handful of attacks and I can manage just fine in between them. I guess that makes me somewhere between a Type II and Type III.
Someone else was asking about the EPISOD study. I had a colleague who knows these things review the clinicaltrials.gov listing (I work for a cancer advocacy organization, for those who aren’t familiar with the rest of this site). For starters, it reads more like a Phase 1 or 2 than a Phase 3 (because it’s so limited). We wrote to the PIs (investigators) with very targeted questions last summer and never heard a response back.
Hey Amy T.
When you feel up to it please post and let us know how your ERCP went today..I have been thinking about you and will be praying that all is well. Hopefully we’ll hear from you soon.
Does anyone have pain after exersise? Yesterday I took a long walk with my husband and my pug and today I am a lot of pain under my breast and right through my back. I used to walk everyday before this SOD started three years ago. I have gain around 40lbs since on Elavil, now Nortripaline. I would love to start walking again to see if I could lost this weight. I felt a little better yesterday, but not now.
Robin- I am in Maryland too and finally after 3 years of constant pain and attacks I am seeing a Johns Hopkins specialist with this SOD. After reading about everyone’s reaction post op I have issues with having it done even one time. My gallbladder was removed in 06 operating at 12% and then a month later I was sick again. I have to say though I haven’t seen much talk about people on real painkillers. I have been through all the levsin, bentyl, cholestramine to stop production of bile, etc. I have been on hydrocodone 10-500 for awhile now and it does mute the pain quite a bit so that I can function at least. I just had two nuclear medicine tests done at Hopkins, and it seems my doctor is actually heading clinical trials for this at Hopkins. My normal GI trained the Hopkins guy and referred me to him. I go back April 7th for the results, but I don’t think I’m heading for surgery anytime soon after reading that most everyone needs it more than once…. My liver enzymes were never elevated I just have attacks and constant pain. Anyone else have IBS or another condition coinciding with this one?
I had the ERCP done at The University of MD Medical center and Dr. Goldberg said that my pressures were very high and he cut and stented my sphincter. About a week or so later I was in pain again. After a year after taking Elavil for pain, I went for a second appenion. Dr. Goldberg said the sphinteromany might not work. So that is when I went to Johns Hopkins to see Dr. Jagganaff(not spelled correctly) he put me through test and everything came back ok. He said he didn’t think I had SOD. So what is it?? I have pain everyday of life. I haven’t missed one day of work this school year. My general Dr. sent me to pain management, and thank GOD. Dr. Jagganaff said, last year when I saw him last I had stress. I have a great life. I have 4 kids, 3 of them grown, 1 14 year old at home, and lots of grandchildren. My husband has been wonderful through this whole painful last 3 years. I have a great job, beautiful home and the cutest pug you ever did see. I teach Sunday school at a Methodist church and really lead a great life. I have got so used to the pain it has just become part of my life. I have put off getting in touch with Dr. Jaggernaff. It really does make me stressed when a Dr. says he doesn’t know what is wrong with me. I had my gallbladder out over 3 years ago. All the test showed my gallbladder looked fine and nothing was wrong with it. My enzymes were high and they finally took it out. The Dr. who did the operation said my gallbladder was hanging by a thread and not even functioning,and my liver was wrapped around it. No test showed that. I have really lost faith in test and Dr.
Thanks for the well wishes from everyone.
My ERCP and sphincterotomy was 3/23/09. I was very nervous about the risk of pancreatitis going in, but figured, I’ll know more after the procedure.
After 45-50 minutes under, I came out in a LOT of pain. Like the SOD “attack” pain that lasts for minutes and then subsides, then comes back. My doctor,not expecting this reaction, sent me to have a CT scan. Though he did not suspect pacreatitis or a perforation, he did it as a precaution. It was neither, thankfully, but the pain persisted. My liver and pancreatic enzymes were slightly elevated, so they admitted me to the hospital “for observation and pain management.” 24 hours later, I was feeling a lot better, and was able to go home. I still had some pain, but NOT in the region where the pain was before, but a feeling of extreme heartburn and nausea. I figured, I can manage these symptoms for a while, it was like a prolonged stomach flu, with feelings of nausea (and almost throwing up) and very loose stools. I took my pain meds to manage, and used Pepto and Tums constantly. After about 5 days, I was feeling a lot better, but still trepidacious about food, eating only small, bland meals.
9 days later and I feel even better, with minor heartburn and the ability to eat a bit more.
The doctor could not explain the pain (and seemed almost shocked that I would have any) but the SOD was definitely a Type I. I have interesting photos of before and after, showing the bile flowing, but I am relieved to know it. The nurses were more understanding about the pain, considering that “the procedure is evasive, and when you alter how something is working, you don’t know how your body will react.” So, I sense that my body is adjusting to the new flow of bile from the SOD, which caused the pain, nausea and heartburn. It may take a little longer to feel 100%, but the SOD pain is definitely gone, and that’s a great outcome for me.
I am no longer taking pain meds, but still take the Carafate and Prevacid. I use the Tums sparingly, and I am still eating light meals.
I hope to continue on a path of feeling better each day, but knowing what you’re dealing with was half the battle. I have no regrets about the ERCP and spincterotomy.
Amy, Thank God you are better!! I’m so happy for you and will pray for you to become stronger and better everyday. How long did you have SOD? Where did you have your procedure? Please keep us informed.
Amy..I am glad to hear that you are doing well. I have been thinking about you! I didn’t think that you would regret having the procedure done. I know that the first two I had done helped me out alot. I was pain free for 2 years. Heres hoping that you have the same results. I know that I can handle things alot better if I know what is causing the symptoms. I hope everyone else is doing well and looking forward to spring!! A little sunshine can do wonders for the soul!!
Has anyone had a successful sphincterectomy…where the pain never comes back. I had an ERCP with sphincterectomy last July for the SOD and my doctor told me that there is only a 1% chance every 10 years that it will come back. I have been pain free since the surgery, but after reading all of the blogs…it makes me nervous that being pain free is going to be short lived and it contradicts what my doctor is saying.
I do figure though, that most people who are coming onto this blog are people who have not had any success with the SOD treatments and that is why everyone is on here looking for answers. So maybe people who have had a successful outcome are not commenting on here.
Has anyone had a successful sphincterectomy with no more pain ever? Just wondering.
Hi Mary, I often wonder the same thing. Very few on the support groups I log on has been pain free. Please tell me what Dr. did your procedure? My Dr. doesn’t want to do it again. I had the Sphincterectomy two years ago and had no pain for only a month or two. Now I’m on pain management, I can live like this but would rather be like I used to be and NO meds! I live in Md, on the eastern shore. But would travel anywhere for a good and understanding Dr.
Hi all,
I am in similiar circumstances as all of you. I had my gall bladder removed 7 months ago and then the pain returned. My Dr had scheduled an ERCP for last week, but after doing a lot of research I cancelled it. My Dr was very dismissive of my concerns about the complications of ERCP. I am seeing another GI Dr tomorrow and hope for less agressive diagnostic tests at least to start. I too keep hoping to hear of successful long term results of ERCP and a few of you have had some positive outcomes at least short term. Thanks for the info. There is one thing I might offer that helped me post cholecystectomy. Other friends have had success with it as well. I now take digestive enzymes before every meal (Mega-Zyme), and the diarrhea finally stopped! Be careful however not to buy the enzymes with ox bile in them. We sure do not need more bile! It made me ill. I’ll let you guys know if anything interesting turns up tomorrow. I share your feelings of being alone so was very happy to find this site.
Hi Robin-
I live in the San Jose, CA area. My doctor was amazing! His name is Dr. Harsha Vittal and he specialized in SOD during med. school. I would recommend him to anyone. Phenomenal Doctor. I had seen multiple doctors before him to no avail. Within minutes of meeting with him, he finally properly diagnosed me. It took 9 months to find the right doctor but I finally did. Good luck in your search. I have been pain free since last July (knock on wood)…and he tells me that I am a success story. It just scares me seeing all these posts explaining how the pain comes back even after they had a sphincterectomy. I am hoping that this does not happen to me.
Hi Mary, I am so glad you are now painfree. I think when school(work) is out for the summer, I will get back to trying to find another Dr. Right now I’m doing better because of the Tramadol so I haven’t been anywhere in a while. I really get discourged when a go to a new Dr. At first they act like they understand and can help you but after the test come back and nothing shows they think it’s in your head. I’ m not giving up but taking a break untill I have time off. Thank for the hope of someday being like you and a success story. How long did you have SOD?
Robin- I had SOD for about 9 months. I had my gallbladder out and then the symptoms got even worse. Horribly worse. It took many doctors and many tests and even more hospital visits before I met Dr. Vittal who diagnosed me and treated me for it. I had the sphincterectomy in July and (knock on wood) have been doing great since then. I worry though because when I read on this blog, I see that other people have been painfree for awhile after having had a sphincterectomy and then it all comes back. But the only thing I can do is enjoy each day I have and hope that mine does not return. I keep reading the blogs though to keep up-to-date on what people are going through and what medical treatments people are going through. I too was at the pit of despair, extremely depressed, extremely anxious, and just ready to give up…but the only thing you can do is hang in there. NOTHING lasts forever. Nothing. That was my mantra that I would tell myself. It was the only thing that made me feel a bit calmer when I was at my wits end.
Tramadol helped me a lot as well when I was in pain. So…good luck and keep us updated. I keep everyone on here in my prayers.
I’m a 27 year old female and I would like to share my story with you. Up until a year ago I led a perfectly healthy life with very little in the way of illness. Last May I unexpectedly collapsed at work with severe abdominal pain, a central like a tightening around the upper right side of my body that persisted like no pain I had ever had before. I was admitted to hospital with suspected gallstones or possible ulcer. An ultrasound and endoscopy ruled out the above diagnoses but I was still left with horrendous pain and abnormal liver function tests. Over the next week or so I improved and was discharged with a follow up endoscopic ultrasound scan (EUS) appointment to look for microcrystals or sludge in my biliary tree.
Sadly before I could have this test I was again admitted to hospital following another abdominal collapse. I had exactly the same pain as the first time and sure enough after 48 hours my liver function tests became derranged. In addition this time, and indeed accompanying every episode of pain since, I have awful loose stools and cramping with virtually everything I try to eat, despite being prescribed Creon.
I underwent an EUS and CT scan during this admission, both of which showed the presence of pancreas divisum, an inherited abnormality which can lead to pancreatitis. I was therefore discharged after a month in hospital with this as my diagnosis.
I was subsequently admitted a third and fourth time to hospital over the following months with the same symptoms when finally somebody suggested that I may have type 2 SOD as well-finally an answer to these awful symptoms-little did I realise at the time what this was going to mean for me.
In light of my increased risk of pancreatitis due to my inherited abnormality, it was decided that manometry to confirm the diagnosis was unwise and over the next few months I was given Botox injections – done endoscopically into my sphincter to try and paralyse the muscle and hence relieve the pain. This had a great initial effect but the coverage was patchy, I was getting little more than 3-4 weeks relief from them and after the third trial of Botox and another hospital admission it was decided that the only real way forward – to potentially offer me longer term relief- was to proceed with manometry and sphincterotomy if the pressure is raised, despite the high risk of pancreatitis in my case.
I am due to have this done the day after tomorrow, a year from my first episode, and having read and learned so much from everybody’s postings here I wanted to share my story with you. I desperately hope to have the success that some of you have had with sphincterotomy and I hope to join you all in sharing support/advice/experiences of SOD.
Denise,
Wow..thanks for sharing your experiences with this awful disease. I must say that you have had worse experiences than I have encountered. As you have probably read that I have had 4 ERCP’s with 2 spincterotomies and stents put in. I have had 2 years in between the first 2 spincterotomies absolutely pain free. It was great! I sincerely hope that you can have some relief from your pain as well. I will be praying for you that all goes well on Wednesday and that you are home soon. God speed to you and welcome to our site!
Hello, I’d like to introduce myself to the board as well. My name is Becca (in my mid 30’s) and I’ve been suffering with pain on my right side for little over a year now. Like many other’s stories that I’ve read on here, I had my gallbladder out over 8 years ago (which took 8 months to diagnose-whole other story) and did not have any other issues in that area until last year. Have had all the other tests (blood, CT’s, MRI’s, colonoscopies, endoscopes, etc) and gone to many dr’s and have had a few hospital stays as well. At one point they were considering exploratory surgery, but the surgeon told me that he doesn’t operate on a “pain” presentation/symptoms only. Fast forward to today and I’m going to be getting a ERCP with manometry this coming Monday (which I’m a bit nervous about). They suspect SOD, but aren’t sure until they do this test. I’m hoping that this procedure will go well with little to no complications and that I can get back to a life without constant pain and worry. Just wanted to say a big thank you to all that have posted here, because your experiences and knowledge has been a godsend to me.
Good luck Becca!!
I was diagnosed with SOD this past December and they did the ERCP….put in two stents. However I ended up with pancreatitis which meant a short hospital stay, a week later they removed the stents and I felt fantastic with absolutely no pain…however just recently I started developing pain again (quite not so severe) but enough to ruin my days. I have had to blood test to check my Lypase and Amylase levels and they are normal. I am still new with this disease. But, why are my blood levels normal but I still have the pain. As some of the other people I wake up fine but the pain starts up later in the day…other days the pain wakes me up. If anyone out there can help me I would very much appreciate it. I put a call into the doctor today asking for any reasoning for this. He will return my call tomorrow.
Thank you
Wow, It is great to know that I am not losing my mind! I had my gallbladder removed in 1993 and everthing was fine until 2006. That is when all my pain began and is still continuing. I have been hospitalized twice and been through 3 differnt gastro doctors. I just started seeing the 4th one this week and hopefully she will figure out what is going on. In hte last 3 years I have has so many cat scans and mir’s that I should glow in the dark, but every test keeps coming back normal. I am scheduled for another EDG on April 22 and the doctor is testing for Celiac and the H. Ployic Bacteria. If those test come back normal then she has suggested sending me to a specialist for an ERCP, so here I set at midnight because I can’t sleep due to the pain investigating SOD. I was hoping that an ERCP would be an easy procedure and give me answers that would solve my problem, now I AM SCARED! The pain in my upper right quardant has gotten so bad that I am currently on a medical leave from work, so I have to go through with the testing . I can’t pinpoint what makes it worse, all I can say is it is constant and I am so tired of suffering. I was diagnosed with autoimmune hepatitis in 2006 after a liver biopsy and liver function panel showed my enyzmes high. I am now wondering if the elavated liver enyzmes are just a symptom of SOD.
I have been having back and rib cage pain for nine months now. I had an upper GI done in January and was told it showed nothing. Then in March my Gen. Dr sent me for an MRI, said it was the nerves in my back and sent me to a neuro surgeon. Had a nerve block on the right side of my back and am still in pain in rib cage area and back. I have an appointment at a pain management clinic but after esearching this last night, I made an appointment back with my GI dr for Monday. I sure hope I can get a diagnois right away without having to endure more pain. I also live between Baton Rouge and New Orleans. Any help you can give me would be appreciated. I have been taking Tramadol for nine months now daily. What dr in this area are you seeing
Thanks for the kind words Robin! I was relooking over some of the posts yesterday and I have some of the exact same symptoms as you. I used to drink sodas like they were going out of style, but can’t touch them now without a bad reaction. Also stear clear of any kind of caffeine (chocolate, cokes, coffee, etc) which is no fun either. I’ve change alot of my diet which has helped some, but definitely hasn’t taken away all the pain. If you’d like, I will update you all on how the procedure went. Take care!
After having intermittant severe adbominal pain for 20 years and every test imaginable (all normal) I finally was hospitalised for a recent severe bout that was unremitting. Turns out the bout was triggered first by a misguided prescription for an SSRI (effexor). I don’t suffer from depression when not in severe pain and SSRIs apparently causes severe gastric hypersensitivity and triggers SOD – if susceptable. The pain onset following effexor comes on within hours and is very acute and reliable and anybody with SOD should check immediately if they are taking an SSRI – prozac, effexor, zoloft, paxil, celexa etc are a few. Welbutrin/Zyban should be ok as these work on dopamine not seratonin which is the problem.
I then had and endoscope that used pethadine for analgesia and took duodenal biopsies which triggered the pain further so I started taking codine for the pain – when that failed I went on endone – a type of oral morphine. When I got in the hospital they put me on morphine as well – all are well known triggers and even used in invetsigations to trigger SO spasm in testing. I had to go off all pain meds except acetomenophen and an anticholinergic called buscopan which helps a little .
The doc I saw at the hospital is a senior lecturer in GI and diagnosed SOD billary dyskinesia with IBS in a few minutes and put me on a sublingual nitro spray. This is the same stuff they use to treat angina as it is a powerful smooth muscle relaxant and relaxes the sphincter oddi as well. The pain relief was miraculous and immediate and likely saved my life as I had previously not eaten or slept for 7 days and had lost 12 kilos in the preceeding weeks. I used it far more than allowed – 2 spray’s every 6 hours whereas I used it almost hourly, and would not recommend this to others – you’ll get major headaches – but the headache pain was nothing compared to the abdominal pain and I figured it was a fair swap.
I would recommend anybody with SOD and no contrindications to nitrate meds (or using viagra) to try sub lingual nitro spray. It seems to work better and faster than the calcium channel blockers etc used for the same purpose.
They also put me on Doxepin which is a tricyclic antidepressant. The dosage is 10mg – not the 200 mg they use for depression so the side effects are negligent. Apparantly it moderates the stimulus to the SO and chemically denervates pain output in a method not yet fully understood and takes 4 to 6 weeks to really kick in.
From what I’m told sphincterotomy should be a last resort. The function of the SO is to prevent reflux from the duodeneum back up the common duct (I wonder if antacids, proton pump inhibitors etc would reduce this?). Sphincerotomy reduces SO tone by splitting the muscle allowing reflux and causes pancreatitus in 15% of cases. I’m not sure how stinting reduces this problem as stents hold the duct open so…? But I hear pancreatitus is worse than SOD. What we need is something that reduces the sphincter tone but doesn’t destroy it completely. It may be possible that controlled doses of botox will serve this function and it’s worth investigating before trying sphincterotomy. I’m current researching this on the net and it seems to yield results in 50% of cases but I can’t find any info regarding th incidence of pancreatitus with botox.
I’ve determine the following most likely triggers for myself: Caffine, morphine, endone, pethadine, codine, all SSRIs, alcohol and larger meals regardless of the content. Unfortunately exercising with weights appears to be a reliable trigger for me as well at this stage.
I have been put on the fodmap diet (it’s on the web) as well but I’m not convinced this has much bearing on SOD and is more for those with IBS. It does appear that lumina distention of the gut does trigger pain and possibly SOD as duodenal irritation may be a trigger. Fructose malabsorption leading to bacterial activity, gas, gut distention and pain may be a factor – hence avoiding fructose and sodas etc may be beneficial. It’s too early for me to comment as yet.
I’m no expert but do have a medical background and have done a bit of research so if I can help further please write. I’m in my second week now and doing much better and may even live again. I hope sharing this info may help some others avoid what was the worst weeks of my life.
As an aside I have also found a TENS machine applied to the abdomen with heat is effective in reducing pain and there is some evidence it may help the SO relax.
Hey there Brett,
I was thinking as I was reading your post that you must have some medical background! I work in a pharmacy so I understand all of the drug content of your post. The only thing I did not understand was the part about the lumina distention of the gut may trigger pain. Can you explain further? When I first started out with this “condition” I was using levsin sublingually and that worked very well but again caused headaches but they were nothing compared to the SOD pain as you said. My docter has suggested maybe trying botox injections but I am fearful of that.
I also agree that large meals will trigger pain and also not eating for long periods of time also will surely bring on an attack for me. Unfortunately with my schedule I go about 6-7 hours without a meal so I try to snack in between customers/phones..etc..
I am on Gabapentin and have found that is helping and also take tramadol during the day to help ease the pain. If I have a bad attack then I take percocet and that usually takes care of it.
Thanks for posting and making yourself availabe for questions. I have learned alot from this group. It is nice to have a place to go to compare symptoms and treatments.
One question I have for you Brett or anyone else that might know is if scar tissue plays a role in making the pain worse. I have had 3 spincterotomies with stent placement on the last one. I know that to continue cutting the sphincter muscle cannot be good.
Becca please keep us posted on your procedure and the outcome. I like to hear how everyone is doing!
Hey Karen,
I’m not a GI specialist so I’m not much ahead of lay folks on this topic – but I can follow the research. Nobody is sure what causes the SO to spasm and there are several types some involving motor dysfunction, others might be congenital constrictions. There’s also a second sphincter in the pancreatic duct which can be problematic – so it’s far from simple. We do know that gall bladder removal can interfere with nervous stimulus to the SO – but that the SO will continue to function without innervation ie in liver transplants.
Scar tissue definitely apperas to be a problem especially if the sphincterotomy (ECRP BTW is just the approach method using endoscope not the sphincter cutting) they can do several tests at the time of ECRP such as mamometry which measures sphincter pressure and is probably the best test available.
It seems to be the terminal portion of the small intestine where undigested fructose sits. Bacteria then digest the fructose and this causes gas which distends the gut causing pain and dihorrea. Antibiotics can be effective in the short term so we know bacteria digesting fructose is the problme. I’m not convinced it causes SOD and my GI specialist got a bit evasive when I asked him directly.
Gabapentin is also called neurontin or Lyceria in Australia. It’s origionally an epilipsy med but has been found to have a sedentary effect on nerves. It’s now often prescribed for nerve root irritation in things like sciatica etc.
Interesting – I did consider asking my specialist about this med but he seem to think the sublingual nitrates and Doxepin where the most effective .
Tramadol or Ultram is a good med that works well for pain relief with less problems with addiction than opiates. I have been a bit worried about trying it because it does have an SSRI effect and I am 100% certain the effexor caused my last serious attack. I have had patients who reported severe stomach pain follwing taking it so I just can’t risk it at this stage. I know there are those on the forum here trying cymbalta without problems. It’s an SSRI as well so it may not be all SSRI’s. The specialist felt that since the SSRI flared me up, and SSRIs can cause gut hypersensitivity, that I must have a IBS component as he felt the SSRIs do not cause SOD. I know the pain was billary and not gut so I can only conclude that in some cases gut irritation can cause SOD – or SSRI directly irritate the SO – but not all ?
Continued cutting of the SO in the presence of scarring is not a good idea IMHO. I think botox is well worth a try as it preserves the sphincter. As far as I can tell it lasts about 6 months. In theory the muscle should atrophy somewhat from not contracting for prolonged periods (this certainly occurs with peripheral mucle – I can’t be sure with smooth muscle under ANS control) so at some point the tone of the sphincter should eventually come down to a painfree level without allowing reflux and pancreatitis. Even if you need an injection every 6 months I think this is a better option and I’m researching it a lot more as I think it will be the direction I go in if this reoccurs. I can find a thing on the incidence of pancreatitis with botox injection so I’d definitely ask before proceeding.
I have some good articles on the subject I can post here but they are kind of long and technical. The do outline the corret proceedure right to the type of catheters and technique that should be used to reduce the risk of pancreatitis to 4%. If any body’s interested I could post them here maybe in sections?
opps forget the article posting – the link is given in the introduction post by Judy. Seem we both found the same thing. The second link still works the first one doesn’t.
BTW I also have a long and technical article on the fodmaps diet and the role of fructose in IBS. The research now is 100% certain that fructose is the cause of most functional gut problems and IBS. Humans just aren’t that good at uptaking fructose – especially if it’s present on it’s own as in many sweetners and soda drinks (it’s used because it’s cheeper than sucrose – it’s listed as FOS or high fructose corn syrup etc).
We can uptake fructose better if it’s present with glucose – such as in fruits like oranges, but not things like pears. It’s really quite complex.
I’ll see if I can scan the article or find it online if anybody’s interested. The Fodmaps website covers some of it.
Thanks Karen. The procedure is tomorrow (Monday) and I’m still a bit nervous about the whole thing. Guess I’m worried that either there will be complications, lots of pain (more than I’m already used to) or that it won’t really help at all. But at the same time, I’m cautiously optimistic that maybe it will beneficial in the end. Thanks for the support and well wishes and I’ll let you all know what happens when I can!
Does anyone have information on doctors that specialize in performing ERCP in Southeast Louisiana. I am between Baton Rouge and New Orleans. I just started seeing a new Gastro doctor and she thinks I may have SOD, I have to have a regular endo on April 22 (3rd one in the last 3 years), if she doesn’t find anything she is going to refer me to a specialist for an ERCP and I am researching trying to find one that is experienced. Any suggestions would be greatly appreciated.
I haven’t written in awhile but I stopped seeing my gastro doc because he couldn’t get past the ‘heartburn’ diagnosis. I figured the next attack I had, I would go to the ER and let them do their tests *during* the time I needed to know what was going on. Well I’d put that off until two nights ago when I got an attack from eating organic raw brocolli and carrots. My husband (who has finally conceded that this isn’t in my head) got me there in a hurry but like most ERs, you wait and wait and wait… Apparently, they move alittle faster when you blow chunks all over the exam room floor because the doc immediately started me on an IV of anti-nausea and pain killer drugs. The pain killer made me so dizzy that I thought I was going to throw up again but the antinausea helped calm down my stomach. Surprisingly, the doctor actually listened to me when I talked to him about SOD (unlike any other doc so far) but he said he couldn’t do the ERCP “because it was nighttime and the hospital never does this procedure at night”. Has anyone else heard this reason? He did refer me to a local group that supposedly are *the* docs to go to for SOD in the area. I’ll be calling my primary doc tomorrow for a referral. After several hours in the ER, they released me…and shortly after removing the IV, the pain came back and I continued tossing my cookies (or broccoli and carrots).
Today, I’ve noticed that I have a large amount of pressure right below my ribs and that I can’t take a deep breath without feeling very uncomfortable. I read thru some of the posts above and some have noted that they feel like a large ball is lodged under their ribs. That’s a very good description of what this feels like. I’ve never had this before so I didn’t know if it was because my diaphragm is just sore from heaving all Friday night and a bit more this morning or if it’s something else. Either way, it’s REALLY an uncomfortable and restricting feeling.
Vicki,
I can understand that the hospital doesn’t do the ERCP at night. You really want a specialist to do it and I doubt that they have one on “standby” at night. There are alot of things that could happen if the dr isn’t experienced with that procedure and they aren’t something you want to experience. Good Luck to you. I hope these new Docs can help you. SOD is a hard diagnosis to come to and I would definetly follow up with the gastro dr.
My daughter is 16 years old. On December 15, 2008 she experienced her first attack. She had her gallbladder taken out January 29, 2009. Had relief for 1 week and the pain was back. After doctor after doctor telling her that it was functional pain. About 3 months has passed and finally her GI doctor thinks she has Sphincter of Oddi Dysfunction. Apparently this is a clinical trial has proved that Nitoglycren taken three times a day 5-10 minutes before meals will help relax the muscles. Right now she is in the hospital and we are waiting to see if we can find an adult GI doctor to perform the ercp since we don’t have any peds GI doctors approved to do the procedure. After reading many postings I am wondering if I should put her through that. Anyone with suggestions please email me at deedeeraya@aol.com
DeeDee I prefer to post here as it may help others as well.
The sub lingual nitro works for about 70% of cases that are clearly SO dysfunction with no complications like papillary stenosis of chronic pancreatitus. Anticholinergic meds like Buscopan are supposed to work by blocking the transmitter substance – acetolcholine – that transmitts the signals to the SO to contract. I have had no success with them at all. Botox BTW works the same way but completely eradicates the signals so the muscle simply cannot contract. I would like to see surgery that severes the motor nerve developed so the sphincter remains intact but this is a way off yet.
Sublingual nitro has side effects as it relaxes ALL smooth muscle so you get coronary muscle dilating and a large drop in BP. I almost passed out yesterday on standing as I have good BP and lowering it further is a problem. You also get headaches but other than this I can find no long term problems with it’s use other than the muscles can accomodate to the drug in some people. There are also calcium channel blockers like Nefidipine that work in a similar way to the nitro spay and are effective in about 50% of cases. I am considering trying these as well.
Regarding ercp and sphincetrotomy the risk of pancreatitus is high and the problems with pancreatitus are enormous and life threatening. I would certainly hold off this intervention untill you’ve trail all conservative options. It seems prophylactic (preventative ) stenting of the pancreatic duct reduces the incidence but I’m not sure yet how. I suspect the long sent helps prevent duodenal contents refluxing up the duct but I’m not sure what happens after it is removed. Either way I think I’d insist on this if I had the surgery – and I’d hold off the surgery as a last resort.
There are problems with sphincterotomy as the SO can scar over and continue to spasm post op. It seems botox is as effective as sphincterotomy and is very predictive of sphincterotomy success if the botox wears off later – ie if botox works there’s a high probability sphincterotomy will as well. I’m not sure of the incidence of pancreatitis post botox but the fact it’s not mentioned in the literature may be indicative of low incidence.
If sphincterotpmy fails there is sphincteroplasty. This is an open proceedure where the sphincter is completely removed and a new sphincter refashioned from the wall of the duodenium.
So my recommended course of action would be 1. trial the sublingual or oral nitrates recommended. 2. add nifidipine if unsuccessful or a more prolonged effect is needed 3. add Doxipin 10mg and wait 6 weeks for full effect. 4.Impliment the fodmaps diet 5. if unsuccessful trial botox. 5. if pain returns only then try ercp and sphincterotomy6. if pain returns trial open sphincteroplasty.
You’ll see the intervention goes from most conservative to most invasive and the risk of bad side effects etc goes up as well.
While SOM (mamometry testing) is the gold standard for diagnosis my feeling is effective treatment is the best diagnostic tool. SOM carries a high risk of pancreatitus just to find out if a treatment will possibly work.
I have identified the following triggers for myself and these may be helpful. 1. codine, morphine, pethadine etc 2. SSRIs like prozac 3. any large meal4. any large irritant like large vitamin, fish oil etc pills – even high fibre5. stressfull weight exercise. 6. Alcohol especially rum.
It’s good that you understand your daughter’s pain and don’t write it off as psychosomatic. I had a great many doctors do this with me. I have walked 2 miles with a 3 broken ribs and did fine but I can tell you this pain is like nothing you can imagine and it turned me into a whimpering baby after 3 days seriously considering suicide. Help your daughter in any way you can.
Here’s a website with some good info on the surgeries. I hope this helps.
http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease4&organ=3&disease=12&lang_id=1
hoping to help– the oddi can easily be opened by drinking a small amount
of water (say, an ounce) fully saturated with epsom salts. this is best
done on an empty stomach (say, upon awakening) and then avoiding food for
about an hour. morning coffee is still fine, even advisable. stay near a restroom.
this knowledge comes from a merk manual of 1950’s vintage and the method
is safe, effective and inexpensive. i have used it myself owing to bilary flow
difficulties.
(note that epsom salts dissolve in water slowly, so you might try putting a
large amount of the salts in a small amount of water, shaking the container,
and then letting it sit in the refrigerator overnight. adding a flavoring, such
as a packet of “crystal light” brand flavor crystals, will help with the taste. also, epsom salts (a smooth muscle relaxant, thus oddi relaxant, with the chemical name of magnesium sulfate), are available at any super-maket or
pharmacy for about a dollar.
i hope this helps.
donald moore
Brett,
From day one I have never thought my daughters problems where psychosomatic, but conviencing the doctors has been another story. Very early into this after she had a ultra sound, CT, MRCP, with all normal results, her GI doctor and her pediatrician tried to covenience me that this was a psychological disorder. The other tests were a small bowel follow through which only showed the barium moving very slow through the small bowel and normal through the remainder. The results stated possible ileus. Her endoscopy results stated chronic inflamation of the stomach. When she had her gallbladder removed the performed a biopsy and the results were chronic cholecystitis. The only other thing that was noticed during surgery was that she had a massive amount of adhesions surrounding the liver area and down her side. All of her blood work has come back normal with the exception of her liver enzymes and those were I think 80. I think for about 3 months they were elevated but no higher that 80.
I have been to the Childrens Hospital of Peoria, Methodist Medical Center of Peoria, the Childrens Hospital of Iowa, and the Childrens Hospital of St. Louis, several trips to the emergency room and talked to every doctor along the way that I could get to listen.
I refused to believe that this is psychosomatic and recieved a referral to Iowa. The only thest they performed there was the MRCP and then he told me that her pediatrician was right that it is psychosomatic because she had been tested up one side and down the other.
I then asked for a referral to Barnes is St. Louis which is know for finding the rare things that other doctors cannot diagnosis. I spent about 15 minutes with this doctor and he didn’t even examine my daughter. He just asked if my daughter was depressed, has she been depressed, and does depression run in the family. I expressed my concerns about her inability to eat causing significant weight loss, 27 lbs in four months. She is now under a 100lbs. He just asked me if she was purging. He told me that if I was there for him to find some rare disorder I was mistaken, because there was not one to be found.
We went home I had a follow up appointment with her GI so in a last ditch effort I took her back to see him and requested more testing. Since she had had diarrhea for three months I wanted a stool test, which came back normal. I also wanted a colonoscopy. He agreed to do those tests but asked me to agree to accept that this is psychosomatic if both test come back normal. My reply was “lets just run the tests”. Before we could get to the colonoscopy she ended up in the hospital.
Three days ago I still had the two of them telling me that this is psychological and that I should have listened to them. I agreed to have Chelsea seen by a child psychologist not because I have changed my mind but because her physical condition is critical at this point and I want her doctors to stop focusing on the pyschologial aspect and focus on her medical condition. The child psychologist reported to the doctors that this is NOT psychologial but medical. I don’t know how much this has changed their opinion.
A new GI doctor has been brought on board becasue her peds GI cannot perform the ERCP. So far he has been great. He has ordered three tests. A MRI, Hydascan, and a blood test checking for IBS. So far all normal results, still awaiting the blood results. Chelsea is still taking the Nitro 0.3 mg three times a day before meals. Too early to tell if this is helping. At this point her diagonosis has not been confirmed. Tomorrow she is scheduled to have botox injected into the spinchter. This seems to be a better way of possibly confirming the diagnosis. If it works then I have been told that it would bring three months of relief before I have to decide about the ERCP. Her symptoms are exactly what everyone has experienced. If this is not Sphincter of Oddi then I don’t know what is next.
This has been a very emotional road. It is has been very frustrating when the doctors focus on psychological instead of medical because they cannot find the answer and give up. My daughter has basically starved for four months due to the inability to eat and been denied her pain medication for the severe pain. If only any of these doctors could be in her shoes or any of yours who have suffered through this.
I appreciate everyone who takes the time to post your comments and knowledge.
DeeDee-
I can not even imagine what you are going through as a mother. Go with your instincts. You KNOW your daughter and know that is not in her head….don’t give up on her. She needs you as her advocate. I am keeping you in my prayers and for your sake hope that what she has is SOD so that at least there can be a diagnosis. Not knowing is the hardest thing. Once you know what it is, you can deal with it. What are her exact symptoms again? Feel free to email me at anytime. I also suffered for months, saw many doctors, and had over 12 hospital visits before I was diagnosed properly. Tell your daughter to hang in there. Nothing is forever. She will be normal again. marycsaca@yahoo.com
Mary Saca,
Thank you for your prayerys.
Chelsea has all of the same symptoms as most everyone who has commented on this site.
Constant stabbing pain increased by activity and food.
Pain on left side under rib cage
Mary Saca,
Sorry I was typing in her symptoms and hit the submit button by error. I will finish typing her symptoms and re submit.
HI Everyone,
Its been a long time since I last wrote. I think I was just so frustrated with all of this SOD we go thru I just couldn’t deal with. My last visit to the pain clinic he wanted to put a permenant pain pump in. He was unwilling to even discuss anything else. So I just quite all thing s medical. I have had several bad episodes but as long as I’m extra careful with everything I eat and do I can at least most of the time I can do my daily thing now. I’v done all the medications, ECRP, spincteropmies, the natural healing supplements, liver cleanses, accupuncture, special water even crazy things hoping that by some chance something might help. But here I am still being careful with no real relif. I am almost ready to go back to my primary care but i am afraid of what ever she might say. This stuff is crazy. I just try to deal with it a day at a time. Good luck to everyone
Many thanks for the Epsoms salts call – I’ll look into it. I have found just drinking water can help, but the specialist wrote that off as a behaviour I have developed because I believed it helped. Well the relief can be rapid and significant if I get 2 or 3 glasses of water down quickly – so yeah sure I developed that behaviour. I would caution against the coffee call though – though I’ve had no immediate problems with it caffine is know to increase gastric motility and I was warned against it.
Diagnosis of abdominal pain is difficult and so many different diseases cause similar symptoms. Phenomena like referred pain make an exact diagnosis difficult and we still lack the ability to “see” pain – bang your leg on the table and take an MRI and you’ll see nothing . I was quickly diagnosed with duodenal ulcers, IBS, hiatus hernia and several other things before they figured it out – only when the tests can back negative and they kept looking did I get an answer. I told the Docs the symptoms don’t match their diagnosis but Docs are taught to think common things are common because they are common. Ie when you hear hoofbeats think horses not zebras. So when the common things don’t show up on tests they start to think something’s not quite right.
Doctors do get psychosomatic patients, it’s real and so is hypochondria and it’s very annoying. After having a few cases a month you do start to hear warning bells when patient’s present with unusual symptoms that fail to respond to any treatment and all the tests are negative.
It sounds to me Dee Dee like your daughter has more than one problem and complications like this can really make it tough. The nitrate spays should give very rapid and noticable relief. The effect is profound and if the nitrate meds haven’t worked it might be worthwhile investigating the spary and stop wasting time .
If the spray doesn’t work immediately you need to look elsewhere (I found it takes more than the 2 sprays every 6 hours they recommend though). Possibilities include papillary stenosis – where the duct opening is narrowed from birth or acquired from irritation and scarring. I think SOM testing is definitely indicated in you daughter’s case (with proper proceedure the risk of pancreatitus is low) and a definitive diagnosis made before proceeding with any intervention – even botox.They may need to test the pancreatic sphincter as well – I think SOD and pancreatic sphincter dysfn are almost 50/50 in some studies.
My feeling is if the nitrate spary doesn’t work then the boxtox probably won’t as well – ie the SO opening is constricted and they’ll need to look at alternative treatments.
There are cases where the SO doesn’t respond to nitrates when it locks in spasm and this causes elevated enzymes on blood tests so it’s a possibility as well. Also cases with chronic pancreatitus down’t respond to nitrates as well.
It does sound like there’s a high probability of SO dysfunction and it’s very common post gall bladder removal – it just doesn’t look like a simple case.
Went on the boardwalk today and made a big mistake. I ate caramel popcorn before I ate my lunch. I have been in pain all day. mostly my right side of my back. Why do I keep doing this to myself? Does popcorn bother anyone else? Also, today I got a letter from John’s Hopkins telling me my GI Dr. is going to Mercy Hospital in Baltimore. I need to hurry and send him an Email to let him know whats going on with me. I haven’t been too happy with him. Maybe a new GI could be more careing and listen better than him. We shall see. Hope everyone had a good day, it is beautiful in Maryland on the Eastern Shore. Robin
Interesting Robin – yep I have a problem with too much pop corn – or fibre really. One of the Docs diagnosed me wrongly with diverticulitis so I started taking more fibre including pop corn and bran. I had one of the worst attacks ever – lasted days.
My feeling is duodenal irritation is a definite trigger and there is a known neural connection between the duodeneum and the SO – fibre is a known irritant so what irritate the duodeneum could set off SO spasm.
I’m not saying eliminate fibre but it’s worth monitoring the effects of fibre and keeping it under a symptomatic dose if vulnerable.
While I don’t get immediate benefit from antacid style meds like proton pump inhibitors etc (nexuim, prilosec etc) the do seem to be of some benefit long term and are worth adding if you have any reflux at all.
Unfortunately this is likely the first port of call for most docs and if it helps investigation and further treatment is likley to stop there
Brett, I know what you mean about fiber. Because of Meds and their side affects, I started taking fiber drinks like fibercon. That was real painful. I love fresh vegetables, but broccoli hurts, too. I was feeling ok when on the way home from work(elem school) I had the worst attack ever. A kid in the class had a birthday and I ate a small ,bite size cupcake. The frosting was made from shortening and sugar. I really thought I was having a heartattack and dieing. Now I’m taking Levsin for the spasms and haven’t had one in a while. If I skip a few days taking Levsin I can feel something move in the middle of my body. I shakes my whole body when this happens.
Chelsea had the botox injection on Friday around 2 o’clock in the afternoon. She was released from the hospital around 6 o’clock in the evening. Upon leaving the hospital her pain level was a 4. It has not been below a 5 with pain meds since this began. I found that to be encouraging.
Saturday she woke up and her pain level was a 6, but had not had any pain meds for 12 hours. After she took her pain meds it was back down to a 4.
She woke up today and her pain level was a 4 after not taking pain meds for 12 hours. After she took her pain med it was down to a 3.
It looks like this is going to work. Her doctor said it would take 3 days to know if it was going to work. Today she is going shopping and to get a manicure and pedicure. She looks so much better. It still seems to irritate her URQ when she eats, but not as bad.
My questions are to anyone who has had the botox injection or knowledge of:
How long did it take for the botox to work for you?
How long did it last?
Did food still irritate your URQ?
How many times can they inject botox before you have to do the ERCP?
Thaks to everyone……
My wife has been struggling with the same symptoms as many as you for over a year now. We have been through ALOT. If you have a common illness, Dr’s, for the most part can get you on the right track. If you have something that they’re not familiar with or it’s out of their exerptise, then you’re screwed.
Now, I’ll share some of our struggle since 2008. My wife is 33 years old, have one child (13 years old), and otherwise is healthy.
Symptoms/Issue(s): Daily Pressure/Pain behind breastbone into mid back, pressure in esophagus, bloating, nausea, and pain causing her to bend forward.
Prior Diagnosis from over 8 Dr’s: IBS, Esophageal spasms, GERD, pulled muscle in the back, costal chondritis, Posture, General Pain, Nerve Receptors, Gallbladder, and Sphincter of ODDI.
I also want to comment on internet boards and feedback. Don’t let them get you skewed in one direction or the other because much of the feedback is biased. When a person is finally “Fixed” they go on and enjoy the quality of life, if they continue to struggle, you see their stories here, on the internet.
Prior Surgeries:
• Laparoscopic Hysterectomy on Jan 2007 (Ovaries Remain)
• Gallbladder Removed in Feb 2009
Procedures:
• Upper GI Scope
• Lower GI Scope
• 3 Probe Manometry (Per Dr Baig)
• 9 Probe Manometry (Per Dr. Murray)
• Various blood work
• Stress Test (Mayo)
• Echo Cardiogram (Mayo)
• CT Scan with Barium (Thief River Falls)
• Colonoscopy (Thief River Falls)
• Lower Abdominal Scan (Thief River Falls)
• Ultrasound and MRI of back (Thief River Falls)
• Barium Enema (Thief River Falls)
• Anorectal Manometry
• Endoscopic Ultrasound x 2
• Chest X-Ray
• EKG
• MRCP
• Sphincterotmy
Medicines Prescribed and Taken:
• Pepcid, Peptol-Bismol. Alka-Seltzer, Maalox, Mylanta (over-the-counter meds)
• Cymbalta
• Lyrica
• Syrica
• Zelnorm
• Zoloft
• Lotronix
• Reglan
• Prilosec
• Nexium
• Protronix
• Aciphex
• Prevacid
• Nitroglycerin
• Diltiazem (Calcium Channel Blocker)
• Anitspazmotic
• Hyomax
• Trazodone
• Dicyclomine
• Meloxicam
• Flexoral
Medicines Prescribed and Taken:
• Pepcid, Peptol-Bismol. Alka-Seltzer, Maalox, Mylanta (over-the-counter meds)
• Cymbalta
• Lyrica
• Syrica
• Zelnorm
• Zoloft
• Lotronix
• Reglan
• Prilosec
• Nexium
• Protronix
• Aciphex
• Prevacid
• Nitroglycerin
• Diltiazem (Calcium Channel Blocker)
• Anitspazmotic
• Hyomax
• Trazodone
• Dicyclomine
• Meloxicam
• Flexoral
Dr’s are so quick to give a diagnosis it’s not even funny. They want to put you on medication and call it a day. I have to strongly suggest that you first find out WHAT is causing the pain and have them prove it before you do anything. I wished I would’ve known that from the beginning because some of these meds put her through hell and NONE of them worked.
After my wife’s galbladder was removed the pain went from a 8-10 to a 4-6 so we knew we were close and in the right area. The general Dr. referred us to another GI specialist because he was stumped.
Last week we made the week long trip to visit with the GI Dr and he was great. He recoginized that we’ve ruled out basically everything and am looking for closure. He did acknowledge the pancreas risk amongst others but said with the proper care and knowledge this procedure COULD fix her. He diagnosed her as Type III SOD, meaning that she has a 50 to 65% chance of curing it. He aslo told me that many, many of these procedures are done incorrectly by inexperienced Dr’s and unfortunately that’s when problems set in. He personally does on average about 400 of these a year!!
It’s now been 4 days since her sphincerotomy and she is doing better. Pain is still around a 3 or 4 but she believes it’s from the gas. He said that time-will-tell her if this was the fix and expected about 2 full weeks to see what the conclusion was.
I/We WILL NOT give up until we know what’s going on and will keep my updates here with all of you.
I can’t believe that I happened upon this website. Excuse the length of this comment, but I have been in pain since August of 2008 (short compared to most of you all). I went to have surgery on ovarian cysts (no prior history) and started to have excructiating pain under my ribs on the right side. My doctor, prior to taking me into surgery, asked about it. I did not have an answer because it had just begun the day prior.
They brought in a general surgeon to look at the gall bladder and said it looked inflamed, but chose to leave it alone. 3 weeks to the day later, and after multiple tests on the gall bladder indicated nothing wrong, I was in so much pain that I ended up in the ER. Next day, despite no test showing anything, my dr. decided to remove the gall bladder because he believed it could not be anything else. Came out of surgery and felt well. Went home, 3 weeks later, another attack. This time, it kept getting worse. By November, 2008, I was back in the ER. This time, the ER dr. asks me how many ERs I had been to (insinuating I was shopping pain meds).
They brought in my surgeon from the Gallbladder removal who said it was not a result of his surgery and would not admit me back in hospital. Another dr. decided to admit. 6 days later, doped up on morphine, percocet and everything under the sun, puking my guts up, etc. they tell me they think it is Sphinter of Oddi Dysfunction and refer me to another dr (specialist). They also inform me that the procedure to measure the pressure and hopefully fix the problem has a high risk of pancreatitis. Don’t think my luck is too good at this point and pain had subsided, so I took my Vicoden and antispasmodic meds like a good girl. 3 weeks later (seeing a pattern here), pain is back and I decide to get more meds, thinking they were the reason I was better. The hospital GI dr. tells my pharmacy to tell me to get my own dr.
I call the specialist and they get me in right away. We decide to do the ERCP and despite the manometry machine being broken, they will at least splice the muscle since I was presenting with classic symptoms of this dysfunction. I come out of the procedure and almost immediately know it did not work. My pain, unlike some, has been everyday, all day. I don’t eat but 1 meal a day at night. That way, if it hurts too much, I am at home and not wincing in pain in front of employees and customers.
My dr. tells me that the procedure does not always work and sometimes they have to go back and do a more aggressive cut to fix the problem. He wants me to wait and see. In the meantime, more tests for inflammation, etc. All are normal. the only test that has ever shown anything abnormal were the liver enzyme levels tested in November when I was in the hospital for 6 days.
After trying Amytriptolene, and waking up 2 days later to find bruises down both legs from my hips to my knees on the outside of each leg (the most frightening thing I have ever seen) and phoning my doctor to tell him about it, I go back to see him hoping we are going to do the more aggresive cut. He proceeds to tell me that I need to see either a behavioral specialist (it’s in my head and I am somehow associating eating with a bad thing, so I have fabricated this pain to keep me from eating) or a skeletal /muscular specialist because maybe when I eat, my ribs expand and it is painful. (Of course, the pain begins within 2-3 bites of beginning the meal- so not sure how that could be the case. I don’t even eat enough to fill my stomach) How insulting.
I sat there in complete disbelief and frustration because I thought I had finally found someone who knew I really had a problem. I am home today because I am in so much pain that I can barely move. I was up all night screaming in pain right behind my ribs where my gall bladder once was and going through to my back and up betweeen my shoulder blades. I dont’ know what I ate last night that could have done it, but based on what i have found, bananas, grapes, brocolli, soup, meat, bread, water (yes, even water sometimes), etc., etc, etc. everything hurts all the time. I never put a bite of food in my mouth that won’t hurt. There are definitely things that hurt worse than others, but rarely can I eat without pain. I wish my pain would go away. there are definitely times of less pain, but it is always there.
If anyone knows of someone who can provide relief, even if I have to go out of the states, I will do it. My quality of life is horrible and I don’t even enjoy eating with my family. I do not have weight issues, have always been healthy, and since August 2008 have hated this. I am depressed and frustrated and sorry to ramble but desparate to find some relief. I know this is what is wrong with me and am willing to go anywhere to make it better.
thanks for letting me ramble.
Sandra
Sandra, I really feel for you. I know what you are going through. If you read some of my earlier notes you will see what I mean. I know the worst of it all is how the Drs. treat you thinking it’s in your head and you are stress. You damn right I’m stress!!!
When I first seen a surgetabout my gallbladder, which was 3 years ago now, he looked at my husband and said your wife’s body is telling her she has had enough. I work at an Elem. school and have for almost 25 years. I’m 49 years old. I work with special needs 4,5 and 6 year olds. I love my job. I play with kids all day. After he said this to my husband in front of me, I started crying. I was in pain and nobody believed me. Then from blood work the next week he knew something was wrong. He took my gallbladder after being in pain for 8 months. My gallbladder was wrapped around my liver and hanging by a thread, as he said in the report. I will never forget how I was treated. Even after the ERCP and sphincteromty the Drs. say they fixed my problem. No they did not!! The only reason I go to work everyday and can cope is because of the pain management Dr. my general Dr. sent me to. My John’s Hopkins GI does not know I’m going. I would not want to be living if not for Tramadol, Nortripaline and Levsin. I still have pain everyday but I can get by. I think we all need to get together and go on Dr. Phil with a panel of GI specialist to get answers and to listen to us. You are not alone. We are here if nothing else we will listen.
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