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). 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 thoroughly explains the problem and the treatment.
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I am so glad I found this web site, I feel better knowing that there are a lot of other people with the same problems I have. I have had two ERCPs, along with the stint and sphincterotomy. The last one was 4yrs ago, but I have had episodes since then. I am scheduled to have another one done in a few weeks with manometry this time. I not thrilled about staying in the hospital this time, but they said I could have more pain with that. I was just wondering if anyone could shed some light on that for me. I’m a little nervous having something different done, but I want this pain to go away!!!!!
Well, I have been seeing another Gastro doc for a second opinion and he think I have a ‘gastric emptying disorder’ instead of SOD (he doesn’t want to do the ERCP because of the inherent risk associated with it). He did an emptying test where you have to eat radioactive eggs and the xray follows it along and records the rate of emptying. Apparently a 90 score on this test is considered abnormal and I scored an 89. He’s also ordered an EGD (my third one) for next week to check for blockage and he’s also considering taking out my gall bladder. I’m also on a new medication – Metoclopramide (Reglan) to see if this corrects the problem.
I’m not entirely convinced that this ‘emptying’ theory is the correct diagnosis. And I’m also not comfortable with this new medication – one of the side effects is drooling! (I think I’d rather puke and be done with an attack than run around drooling all day…). I actually haven’t started it yet as I’m waiting for my next attack – I’ll take it as soon as I feel it coming on and see what happens.
I’m also going to try the epsom salt suggestion from an earlier post – it makes sense. I’m willing to try anything to avoid drooling!
Vicki..I also have gastroparesis I believe is the medical term for delayed emptying of the stomach. I also have been diagnosed with IBS and SOD and have had my gallbladder out. I have had 4 ERCP’s with stent placement on the 3rd on and the manometry with the 2nd one. I have never developed pancreatitis but I do know that the dr doing the procedure has alot to do with the outcome of that. I also take metocloperamide and have never “drooled”. I would not be worried about that if I were you. I wasn’t aware that was a side effect. Did your pharmacist tell you that? How bad is your pain and how often do you have it? Have you had the HIDA scan to see how your gall bladder is functioning?
Hi Vicki,
Don’t let him remove your gallbladder unless it is diseased. I think it’s too readily done and is unnecessary. Also, it may be time for a third opinion. I’ve seen 5 GI doctors who were all to wary to perform ERCP (what I needed) because they weren’t specialized in that. It seems most GI doctors only suggest and recommend the types of procedures that they can perform.
I had my gallbladder removed – granted it was diseased and full of stones – but I had recurring pain 2 weeks later. Now, 6 years later I’ve developed daily pain. They found a stone in my bile duct that wasn’t showing up on tests I had done years before. My issue could be a combo of common bile duct stone and SOD III.
Gallbladders and IBS are always the go-to diagnosis for our issue. Have you had an abdominal ultrasound?
Went back a couple a weeks ago to see a new GI at John’s Hopkins. Had an MRI and stool sample. Haven’t heard anything from the Dr or if they found anything. I hurt very bad tonight under right rib. I have been feeling better lately. This new Dr. says I don’t have the sympoms of SOD, I’ve had the same sympoms for over 3 years. So why did I get the ERCP and cut and stented in the first place if I didn’t have the sympoms. I give up trying to figure this whole mess out.
I just real about Colofax beging very helpful in a lot of cases. It sounds like another anticholenergic like Hyoscamine (Buscopan) which didn’t help me at all. The chemical name is mebeverine hydrochloride. I don’t see it available here – only in the UK. Does anybody have any experience with it?
Hello, I have been reading these post for awhile now and I am amazed that all of you have hit my symptoms on the head. I have seen 2 gastro docs and both of them feel that I have SOD but the doc that I am seeing in Indianapolis doesn’t really want to do the ERCP. I am a Type III. I have pain everday. It starts as an ache under my right rib and then it feels like a balloon is filling up and is going to burst. I have been to the ER many times with the last time being last week. They don’t do anything but give me pain med and send me home. I have had all of the tests including an MRCP and everything always comes back normal. I had my gallbladder out in Oct 2008 but the pain is still there just as it was before the gallbladder removal. I have been diagnosed with IBS and I have had part of my colon removed for diverticulitis. How do I get a doctor to perform an ERCP? I strongly feel that is my problem and I am at my wits end. This is effecting every part of my life and I need it to stop. Anyone out there who is a Type III? I would appreciate any advice.
I live in Indy too. I had the ERCP and sphincterotomy in 3/09 for my type III and another ERCP and still have the same pain as before, everyday. I did end up with pancreatitis after the second ERCP. My GI doc has now pawned me off on a pain doc. I don’t have any advice.
Hi Jennifer! I am in the hospital @ the U of M deaing with this stuff right now. I’ve had that dull ache under my right rib cage with the same feeling of haviong a balloon there that is going to burst for about 2 1/2 years. I’ve had every abdominal test known to modern man. All my enzymes and liver function tests have always come back normal. I had my gall bladder out a month ago and the pain is even worse.I had an MRCP done last night. I’m already scheduled for an ERCP on the 8th of
July. My GI dr, who will do the ERCP, came in this morning. He said he truly believes that I have SOD, even without the MRCP results or the ERCPC being done. This disease is certainly a struggle. I’m fortunate to be in the hands of good drs and a good pain mangement clinic! I hope everyone has a pain tolerant day!
Kris, That is where I have to go on the July first to Dr.Freeman. He has done both of my other procedures. I am a little scared about the manometry, just because I don’t know if or how much pain it will cause. Although what is a little more pain, if I can get some relief again.
Hi Michele! Is he doing an ERCP with manometry on the 1st? Did you have the manometry done with your othe procedures? How did they go for you? He didn’t talk about the manometry component during my ERCP. Maybe that’s something he’ll do if he determines it’s necessary during the procedure? I’m scared about the ERCP. He’s told me that his technique minimizes the risk of pancreatitis. Did you have to be admitted after your procedures? They told me to pack a bag in case that happens. I hope the manometry is successful for you. I agree with you that a little more short term pain would be worth it if you can get some relief!
Kris, Yes he is doing both on the 1st. This is the third time I have had an ERCP, but it’s been since 05, so it did help. The first time I had to spend the night, just in case it caused some pancreatitis, so they can manage the pain better. But I told them indirectly we already have a form of it anyway, so the second time I said no way I know the routine, so I’m going home. The ERCP isn’t scary , but if you haven’t had it done it is scary. I was scared the first time. Just like this time, not knowing what to expect after the manometry I’m a little nervous. So when are you having it done? I’m counting down the days….
Kris – when you say U of M – are you speaking of University of Michigan? I was there earlier this year and had an ERCP and a sphinctorectomy. They did the manometry and said that the pressure was extremely high. I have been fine for 3 months and now am having the pain again. If at Michigan – who is your Dr.? Mine was Dr. Elta.
Hi Jennifer,
Out of everyone here, your situation seems closest to mine. All except for the diverticulitis and IBS. My mother in law has the diverticulitis. I had the Irritable Bowel Dysfunction blood panel done and was not diagnosed with IBS.
While the SOD III isn’t confirmed, a stone in my common bile duct was confirmed via ultrasound and MRCP. I’ll have an ERCP in a couple weeks.
The way you have an ERCP done is you ask your GI doctor to refer you to a GI doctor who can and will perform ERCP. Luckily, I moved from Tampa, FL to New York City in the last few years so I have advantage to the top endoscopists at Lenox Hill Gastroenterology. Within minutes of seeing a GI doctor here, I was told to have a repeat ultrasound and MRCP. Not sure if their machines are better or what, but they found something doctors in Florida could never see. Also, I was referred immediately to an ERCP specialist. The reason why you can’t get a doctor to perform an ERCP is that it is very dangerous and they don’t want to get sued if you lose your voice forever or some other worst case scenario.
As I speak to everyone here, I am trying to determine the demographics of our group. It seems most of us are Female. What is our age group? I have been dealing with this since 23 and I turn 28 next Monday. I am 30 lbs overweight and have been as heavy as 230 lbs. I only mention the weight loss since that predisposes us to stones.
My pain is so bad that I’m on disability until I have the ERCP. I plan to go back to work a few days after that so I’m trying not to psych myself out by reading all of these pancreatitis horror stories. How sane is it to believe I’ll be back to work that soon?
I have been diagnosed with SOD III I have bben to 3 gastroenetnolgist and had a 4th look over my medical test. I have had 4 ERCP’s with 2 spincterotomys both with stents. The last one was against my doctors will but when he did the manometry the pancreatic duct was blocked again. This surgery he also inserted a balloon and stretched the pancreatic duct and inserted 2 stents. I finally got some relief but now the stents are lodged and have to be removed so I am waiting to be scheduled for yet another ERCP to remove them. I do get pancreatitis after each procedure but compared to the daily pain I can tolerate the pancreatitis in order to get this fixed. I was told by my doctor that he has cut all that can be cut on the spincther and that this may be as good as it gets.
Crystal..you have kind of answered a question that I have had for a long time now but got no answers. I know everyone is different but I was wondering if they do reach a point where they cannot cut the spincter anymore. I have had mine cut 3 times with stents placed in the 3rd time. I have never gotten pancreatitis though thankfully. I have kind of accepted the fact that mine is as good as it gets also as long as I can keep my liver enzymes down then I can manage the pain with meds right now. Jennifer, I think alot of us here are Type III SOD sufferers. After my first 2 ERCP’s with spincterotomies (cutting of the spincter) I did get 2 years each time virtually pain free. It was great! The 3rd time they put stents in and I have had pain every day since. Are your liver enzymes normal or elevated? I would think that a dr would be more willing to do the ERCP if they were elevated. I would suggest that you just keep hounding your docs to do the ERCP and maybe you will be lucky and have 2 years pain free like I did. Tell them you’re tired of going to the ER. Good Luck to you.
Hi Karen,
Facing a sphincterotomy soon, I’m happy to read about your intermittent 2 years of no pain! Hallelujah! I hope I follow in your footsteps.
I am wondering if you’d be so kind as to share the diet you tend to maintain and/or any predispositions. I’m hoping that by maintaining a meal and exercise plan that I’ll be able to increase the odds of success.
Julie, was your doc. Dr. Sherman at IU Medical Center? He is leary to do the procedure for several reasons. 1 – I don’t have elevated pancreatic or liver enzymes. The MRCP showed no problems with any bile ducts. I only have the pain. 2- My pancreas is laying at a weird angle they say and it might be more difficult to get into the duct to conduct the manometry.
Karen, all of my test keep coming back normal. Even the bloodwork that I have done in the middle of an attack in the ER. I’m glad to hear you at least had some relief for awhile. I would be happy with a few years between attacks. I have some type of attack about everyday. The intensity is the only thing that varies.
We are leaving for vacation tomorrow and I hope that I can keep the major attacks away while I am gone.
I saw Dr. Baluyut. He does the ERCP’s out of St. Vincent. I have pain only, my enzymes do not go up. I went to the ER at St. Vincent Carmel one time. The first time in my life to go to the ER. I got the why are you here in the ER you have chronic pain this has been going on for months we only treat acute conditions here lecture. So it was very frustrating when I was in allot of pain and did not want to go back to the ER and Dr. Baluyut did not call me back for a week.
I’m in so much pain tonight. Today at my son’s 8th grade Honor’s program I ate 2 small chocolate candies, they were cookies with a peanut butter cup in the middle. Then I ate pizza, 1 piece, a salad and decaf ice tea. I feel like my insides are on fire! I have already taken a acid control pill and that did nothing. I just took a protonix, I hope that does the trick. My back feels like I’ve fell down the stairs, it hurts so bad along with my right ribs. Sorry for all this complaining.
Spent the first time at the lake this weekend, no pain since the procedure *knock on wood*.
Type III folks, there is hope, even if this isn’t it. I know at this point you’re all just wanting a resolution and I wish that I could give you one but I can tell you that my wife was in the SAME boat. Thankfully the ERCP she had done completely fixed her and we’re praying that it sticks forever.
Don’t give up and if one or two, or 5 Dr.’s give up, YOU DON’T!! Keep looking and don’t settle. There are Dr’s that will help you.
Thank you for the encouragement! I’m praying for the same results after my ERCP on the 2nd of July. I hope your wife is continuing to feel well!
Also, Karen, I’d just like to recommend maybe a place on this site for some FAQ’s for those that have SOD. Maybe a window that lists the foods and drinks to avoid along with various meds and procedures that have been noted to work that have been mentioned here. I know there’s also been 2 hospitals and Dr.’s referenced…..that should be included also.
Hi James, as much as I’d like to have a FAQ for SOD, please keep in mind that this is a post on my personal blog. It’s not really a site about SOD. So if someone wants to take the time to create a FAQ, I’m happy to start a new post or page for it but I really can’t put the work in to making it happen right now. Thanks for understanding.
Like I said before..we appreciate all that you are doing Judi! Thanks again.
My pleasure. I’m just thrilled this thread has taken off like this and has helped so many people, myself included. Wish I could do more.
Sorry, I meant Judi…….
I’m building a web-site now for SOD sufferers. Would you like your blog to be linked to my site?
Sure, just link to this page only rather than the main site. Can’t wait to see the result.
Hi James,
I haven’t been diagnosed clinically, but after reading about SOD, I can only HOPE that there’s finally a label I can put on what’s ailing me; ie: doctors, gastrointerologsists, tests, x-rays, more tests, . . everything coming back- NORMAL! My pain is real, not knowing what’s going to make me puke when I eat, extreme weight loss, low-grade fever (on n off). . yadda, yadda, ya.
So, when I saw your entry here, thought I’d check it out. I’m heading there right now. I’ve got my fingers crossed that you’ll have already found the answers I’m looking for!
I’d like to get the website. thanks
Judi my thanks as well for starting the site.
James many thanks for the encouraging words.
From what I can ascertain so far the skill of the Doc is crucial in a successful outcome. If I can’t find anybody here with the same credentials I’ll fly to Minniappolis.
Crystal, balloon disetention of the SO is not recomended – in fact it’s cautioned against – as it has a very high rate of pancreatitus and a negligable success rate. I’d be cautious of any doc who recommends it.
For type 111 sufferers we have a choice. Manometry testing with as much as a 25% rate of pancreatitus from the test alone. Then only a 50% chance of finding high pressures. If the pressures are normal sphincetotomy as a treatment has an almost zero success rate, if elevated there’s a 50% chance of succes at best.
Results with Jame’s wife are encouraging and begs the question of how high the success rate would be in the hands of experienced operators.
Pancreatitus results from inflamation and irritation of the HP ampulae in general it now seems. The more you mees with it the more you risk. Pancreatitus isn’t a walk in the park and necrotising pancreatitus will kill you – though some days I think this might be just fine – it’s a slow agonising death.
Alternately there’s botox with a low risk of pancreatitus, a high chance of success if the SO is the problem and a good indicator of probable success with sphincterotomy if it wears off – and it doesn’t require a lot of surgical skill to perform.
There are some reports recommending it as a diagnostic tool when manometry is unavailable. I thinks it’s preferable even when it is.
Brett, Have you contacted Dr. Kinney yet? I would strongly suggest you try and reach him for a consult and let him know your circumstances.
You are 100% correct though, the Dr. HAS to have the knowledge of this procedure. He told us after the procedure that the pressure didn’t seem high although getting the probe through the sphincter was tough because it was tight. He was that alone gave him a “Hunch” that was her problem and thankfully, he was correct.
It’s a high concern as a type III patient because they cannot PROMISE you anything, just what they can do along with stats.
I’m hoping to have the website almost completed by the end of this week.
Please be sure to post it when you’re done. I’m looking forward to it! Thanks for taking the time to do this.
Thanks James,
I haven’t contacted DR McKinney yet. I’m due to see a local doc here in 2 weeks with a good rep who does a lot of ercp proceedures. Flying to the USA and paying US medical bills without insurance is a last resport.
In the last 3 days I’ve gotten miraculously better and I’m having trouble figuring out what’s going on. The signs and symptoms are just so unclear and confusing.
One thing I found recently is if I accidentally trigger a gag reflex – cleaning my tongue – it brings on severe pain in seconds. So do large gell pills and I think this is why the endoscopy was a problem just as much as the anaesthetic. The small intestine itself must be irritable and I can’t see this fitting with pure SOD.
So I’m very reluctant to do more tests now as I almost have a normal life back – and it was medical intervention that started all this in the first place. I’m just too sacred to risk it because if they flare it up again they have nothing to offer to help except morphine and I don’t think I can tolerate another 4 days in hospital on drips and 3 months of unbearable pain .
I did start taking an NSAID – ibprophen as a Doc friend thinks it might be acalculous gall bladder disease. (Your wife likely had the same diagnosis at first when they took it out). An inflamed gall bladder does respond to NSAIDs but not SOD. I can’t be sure if this is what’s going on and if it’s a coincidence but I’m not questioning the results.
The interesting thing is there really is no test to determine if it’s an acalculous gall bladder – HIDA test ejection fraction does not correlate well with LAC results – type 111 SOD – manometry doesn’t correlate well with ES results and duodenal hyperalgesia can only be tested by irritating the stomach and asking if it hurts. All the tests almost certainly risk flaring patients up and provocation is view as a positive HIDA test.
It’s a shame in some ways the disease doesn’t occur more frequently in males. We have better tests and more effective treatment by now if they could write patients off as hysterical females.
My congratulations on starting the new site. It would be great to have a resource that can connect signs and sympotoms with disease and perhaps nail this down. Things like if you get worse with morphine then it’s definitely not duodenal hyperagesia – but could be SOD or gall bladder. Specificity of signs and symptoms just isn’t in the medical literature on this tests are non specific and too much relies on the Docs hunches.
Brett,
My last ERCP cost my insurance about 8000 and the pancreatitis that resulted cost them 9000 (3 days in the hospital) and I still have same daily pain as before. My pain does not respond to ibuprofen and is made worse by Ultracet and Vicodin. I do not have pain associated with my gag reflex. But I did notice some difficulty swallowing with anticholinergic meds such as hycosamine. I was trying to get an appt. with the docs here in Indy that are doing the research, but they have to review my records before they would accept me as a patient. It has been 3 weeks and I have not gotten a call so I am losing hope. I am pharmacist and would really like to pick their brains. They have to have allot of type III still in pain with the study due to the Sham/placebo arm as well as those like me who do not get relief from ES. I think I am going back to taking Baclofen the side effect are miserable but it is the best pain relief that I have found so far. It is not fair to my 7 year old or the baby for me to be in so much pain all the time.
Thanks Julie,
I can’t be sure it’s the NSAID that have done the job as I’ve been doing quite a few different things now and it was slowly improving previously. Thanks for the info about price – $8000 is reasonable but I’m sure to need to stay longer with complications – I had 4 days just from an endoscopy.
Any opiates make me worse as well but I was so flared from the endoscopy at the time it’s hard to tell – and I don’t want to start experimenting now. Anticholinergics are no help at all and I’ve tried them all. The SO should be relaxed by such meds to a degree but this doesn’t rule it out in my case because the nitrates work very well and do the same job.
I can’t be sure why ES doesn’t work as often as it should – but often when tested correctly, it’s the pancreatic sphincter or both – that covers quite a few failures I suspect. Then the cut is incomplete when done endoscopically. The visceral hyperalgesia theory doesn’t satisfy me fully as I’m sure the pain is less severe in these cases and should respond to anticholerginics. Also such pain should not come on at night while asleep when the smooth muscles relax and typical IBS symptoms abate..
We use baclofen for spasm of skeletal muscles in cases of Multiple sclerosis and I had not considered it for SOD. I wasn’t aware it works for smooth muscle – thanks for the mention.The side effects are nasty and my feeling has always been if a muscle relaxant is fully effective you wouldn’t be able to walk – but smooth muscle specific relaxants may available. So far I’ve found sub lingual nitrates the most effective and the side effects negligable – but the results short acting. Nefipidine does nothing for me but a long acting nitrate may be the ticket?
To date the most effective anticholergenic is of course botox. The studies show just one 100ml shot can work for 6 months. I can’t see a small single injection inflaming the papillae anything like a large cut and it seems here that reoccurance is quite common following ES anyway. If they ever come up with longer acting types of botox you can bet it will become the gold standard treatment in not stenosed type 111 SOD.
Hi all, I’ve been reading this site for a while and have finally decided to write. I have questions and hope someone may have answers. I had my gallbladder removed in Nov. 2004 and since that time have been miserable. Like most of you, I have had every gastro test imaginable. I was finally diagnosed with SOD II when I went to the hospital one day during an attack. I had 2 ERCP’s in 2006 and now it is time for another. I’m trying to hold off as long as possible, but am currently getting sick about twice a week. When I have an attack, I get really bad stomach cramps and back pains. Then I get sick at my stomach, usually for about 3 or 4 hours. I can normally tell on the day that I am going to get sick because I break out with a rash on my stomach, back & butt. Then later in the day, I start hurting really bad. Does this happen to anyone else? Also, I itch all of the time. Almost like an internal itch. I have been told this is associated with the liver, but who knows. Anyway, I just wanted to share my story and see if anyone has any feedback.
Joyce,
Did the first 2 ERCPs with ES work and were you pain free afterwards? Did you get pancreatitus at any time? How are they determining that you need further ES – manometry, elevated enzymes or just on your pain return?
Have the docs given you any reason for the recolsure – or at least reoccurance. This seem to be a very common problem posted here by those who get temporary relief. Finally did they stent the ducts post cutting? This does seem to be a factor in preventing panceatitus and reclosure – unfortunately there are problems senting for more than a few days.
Hi Brett,
The 1st one did not and they did the 2nd one a month later. Yes, it worked good for approx. 3 months and now the pain is gradually getting worse. I have not gotten pancreatitis at all. My enzymes have been elevated and the pain has returned approx. 2 / 3 times a week. They did stent the ducts both times. My doctor told me that this would be an ongoing issue and I could possibly have to restent every 12 – 18 months. Everything I read seems to imply that SOD could be a result of a blotched surgery (for lack of a better word). Even my doctor mentioned it, although he is not the one who did the surgery. What do you think about this?
Hello everybody, I’ve completed the website a little early so all of you get an early look. I would like to encourage everybody to start using the site and building the blog. Judi’s blog will always be a great reference but let’s keep SOD on a dedicated site for the unfortunate people looking for the one-stop-shop for info on SOD.
Here’s the link and I hope to see you there.
Main Site = http://www.thesphincterofoddi.com/
Blog = http://blog.thesphincterofoddi.com/
Also, if there’s stuff you would like to see on the site or suggestions, please let me know.
James
James,
Thanks for making thesphincterofodd site. I had my husband sit down and read the whole step by step story of what you and your wife went through. It sounded so much like me and my husband’s story. My husband does a great job of keeping records of my last three year nightmare. When we go to see a new Dr. he takes the whole huge medical file for them to see, he also has copies for them to keep. I has the ERCP and Sphincterotomy but it did nothing for me. Now the Dr. says its probably not SOD. I still have the same pains .so what is it? Thanks for the hope of maybe someday finding the right Dr.
Have you tried Dr. Lawerence at MUSC gastric clinic in South Carolina. I had gastric bypass so they can’t do the regluar ERCP because I dont’ have a stomach I have a pouch Dr. Lawerence is the only doctor that will try to do ERCP precedure if he can’t do it I will have to have open surgery to correct this .. I had my gallbladder removed in January and ended up with a biliary duct leakage and back into the ER, The surgeon who done my surgery said since they had taken my gallbladder out it had to be my liver since I had a fatty liver. and my liver count was 575 and sent me out the door told me to go back to my GI doctor, I did and I do have to say my GI doctor done everything to find out what was causing my pain, If he wasn’t for him I would still be wondering what was wrong with me.. I’m sad to say that so many doctors think you are there for pain meds and don’t get to the bottom of it but my GI doctor knew I wasnt there for pain meds I wanted to know what was wrong with me.. My GI doctor is retiring in August I’m now trying to see which doctor I like the best in his practice. that will take the time to listen to me and get tot the bottom of what is going on.I’ve been dealing with this since Oct, 2008
. I’ve read that MUSC is in the program to find why sphcinter oddi happens. I’ve been in and out of the hospital with pain and burning, There isn’t anything you can do for it I go days without eating or drinking because of this. my stomach and intestines feel like they are going to burst sometimes and the pain is unreal, I can’t eat meat , ice cream, drink coffee, tea, I have Type II , I live in TN a 9 hr drive from Charleston S.C to have this precedure done July 11,2009.. I hope you find someone to help you find out what is going on with you. Best of Luck to everyone that has this very painful problem. I’ll post when I have my precedure done to let you know how this goes..
wow, thank you for posting, I have been going through some of the same issues and honestly felt like I was crazy… but lucky for me my Dr. has already mentioned the possiblity of sod… .. but reading what you and everyone else wrote gives me some comfort in knowing iam not the only one…. take care and Thank you agian…
So glad I found this site! I have been having this problem for at least 15 years and did not know what it was. I had the sphincter muscle cut almost 4 years ago and have still had symptoms. The strange thing I have realized is that if I pay attention, I usually have warning signs (not that it does me much good as the Bentyl does not help): I cannot drink coffee of morning and I am a coffee hound, I develop a greenish-white build up on my tongue with a nasty taste in my mouth, I start to have severe acid indigestion and burp awful burps that smell rotten, and I lose my appetite. A few days or a week after that , I usually start hurting. My attacks don’t seem to come on suddenly as much as build up, but when they hit they are hard to get rid of. I have been in the ER twice this week with good bloodwork and an ultrasound that showed everything was “normal”. Yet, I cannot eat and I am in horrible pain. I also have wondered about the anxiety issue as mine seem to build when I am under a lot of stress. I seldom drink because I also have fibromyalgia and take daily doses of Ultracet for the pain. I don’t want to kill my liver by adding alcohol to it. I am going back to the doc that clipped my sphinctor muscle to see what he says, but I am not sure he will do anything because of the tests being normal. When I had the msucle cut the first time, the duct had spasmed so hard it actually pulled a piece of my intestines up into it, thus blocking it. The doc was thrilled to see something so strange………but I didn’t care……I just wanted him to stop the pain. I have cleaned up my diet and try to watch what I eat…..keeping it as lean as I can. I do know if I eat small amounts regularly (like every 3 hours) I seem to do better. My husband has paid close attention to this as we really had to document to discover the fibro and went through a bunch of doctors who thought I was nuts at first. I am really just as lost as the rest of you and want the pain to go away. From what I have read, I am type III as everything always looks normal. I want them to find out what is wrong and fix it instead of sending me away with pain meds!
Hey my friend found this for me it is great to hear about other people with the same problems. Well anyways Ive had pain for 7 years im 30 years old and had gallbladder removed in 2006. recently Ive been having the same pain I went to the ER and they did a MRI and Ultrasound and did find that my Colon was very think so they referred me to GA Dr . Ive been having these pains in my upper right quadrant my liver and pancreas enzymes were high from Blood work at Hospital. Dr felt around and then told me that he thought it was SOD he did a colenoscapy that was normal then did a endo with a ultrasound on end that came out fine. Went back in for antoher appointment because I was still having pain. He told me that he beleives im type 2 SOD because blood work showed high liver enzymes again. He is sending me to Portland ME where I guess thers is a great Dr that specializes in this. So I have an appointment in the next couple of weeks. Today and yesterday I feel so sick called the on call Dr and he just about laughed at me and told me I have to live with the pain. I was not impressed. He also told me I can go to ER but they cant do anything for me. So this is my first blog here and thank you to who ever started this.
Oh my goodness! I was just surfing and finding out more of what was just done to me. (sphincterectomy/oddi) and found this website.
(This gave me more info than my doctor did!) It sounds like this won’t be the cure and I could be looking at some more issues down the line. I had my gallbladder removed nine weeks ago. The first six were like a dream. I felt so good! I was back to my old self. Since then, I’ve had pancreatitis (high amylase), a partially blocked intestine, more pancreatitis and gastric ulcers, and now just went through the sphincterectomy. (3rd hospitalization in 4 weeks.)
It bums me out to see that I could still go through some pancreatitis again. I’ve been watching what I eat and cut down on portions. Any info you can give would be great. You all are really helpful. God Bless and Luck to us all. Di
My situation sounds very similar to yours Judi. I live in S.C. and I had my gall bladder out in November of 2005 b/c I was having pains which they blamed at first on reflux. (yeah whatever!) So the gall bladder was removed due to gall stones and then what do ya know pains come back and in January of 2006. I was then sent to the Medical University of South Carolina in Charleston to have my Sphincter of Oddi looked at.. They actually tested the way the gastric juices went through and then made a small incision then put in a stent. Everything was great, the pain was gone and now it is June of 2009 and the pain is back. I am expecting them to want me to go back to MUSC to have it looked at again and I am not loving that option. I am expecting a call from the dr today with what our steps should be next so I guess we will see! It is all just very frustrating!
Hi Alison,
I also live in SC and go to MUSC. Who is your doc there? Are they redoing your stents? I am suppose to go back soon for another restent but am trying to put it off as long as possible. Have you been out of pain since January 2006 or has it gradually been building back up? According to my doctor, restents are usually only good for 12 – 18months and then you have to have them redone. Have you been told that?
My goodness Judi – I cannot believe how much you know about this – I hope you can get it fixed soon and not have the problem any longer. Say hi to my girls and Eric! Martha.
I just want to plug these two sites again. It would be nice to start compiling feedback there for others that haven’t found this blog.
New Blog = http://blog.thesphincterofoddi.com/
SOD DEDICATED website = http://www.thesphincterofoddi.com
With all of your help, the new blog and site could help thousands of others.
James
Well, after almost 10 days of feeling like doing emergency surgery on myself, we found a hospital 3 hours away that would help me. I went overnight. I was put on Nexium as I now have GERD from all the acid that was churned up and Levbid which is a muscle relaxer. I am a type III that had the muscle cut due to intestines actually being sucked up into the common duct during an attack. The doctor really thinks I have devloped IBS along with the spasming duct. He is very knowledgeable in this area. He did give me the option of him going in and looking but would rather try the diet and meds first. And I must add I was all for that! I had to go from high fiber to almost none, but in two weeks I can start gradually introducing things to see if they bother me. I am on the Levbid daily for the two weeks, and then will use it only during an attack after that. I eat 4-6 small meals a day, but things still hurt some. Not like during the last attack. I am wondering about the small intestine issue now myself. The two hospitals in our area say they are “emergency” and not chronic issues. They drugged me up and sent me home. They would not even suggest a doctor saying they could not do that. Finally in a search for the doctor that cut the muscle, we found another whom I like much better. I am so MAD that I have to pay taxes for a hospital to built in my town that won’t even help me!! We will see what happens, but this new doctor seems to think that together we can lick this and that is a good attitude to have!
I have some questions for those of you who take Nortriptyline. What dose did you start at and what dose controls your pain. How much relief? Is it worth the side effects? I depise those type of drugs but if it will help a great deal, I am willing to try it. It is my understanding that Nortriptyline ’s side effects are less than those with Elavil because it is a second generation drug of Elavil.
Has anyone found anything that helps?
I am on Gabapentin and have had some relief with that. I have now gradually worked up to 200 mg every morning and 200 mg in the afternoon and 600 mg at bedtime. I also take tramadol during the day for pain and percocet at night forthe pain. know others have said that the narcotics make them worse but the percocet is the only thing that reliefs my pain during an attack. Hope this helps.
I don’t have attacks anymore. My pain is constant. Feels like a band and burns, it even radiates up into my chest at times. Very difficult to explain but it is like referred pain. (The pain is in one place but you feel it in other places) Dr. says it is visceral pain. Anyone else have this type of pain?
Bedhed, I have been on Elavil for over three years and would try to start and stop the medicine based on how I was feeling. It got the point that I was worse on the med than off. It takes time to build up in your system. goggle elavil and lots of info on it. I was taking it for “fibromyalgia” the catch all phrase for the doctor saying ” Don’t Know” I have been on Lyrica now for over a year. It seems the only side effect for this is being hungry all the time and sometimes makes you feel HIGH, but there is so much more flexibility with the dosing of it so if I’m in a hurting spell, I just take an extra one.
I tried going to a new GI doc today. It was a complete waste of my time, so frustrating. I recently starting having the burning (mine is not constant but occurs multiple times per day) in addition to my regular pain. I asked the doctor about it but he would not say what it was all about.
I started out with Elavil 25mg, then 50 then 75mg. I felt like I was speeding. I gained about 50lbs. I now take 25mg of Nortriptyline at night and 50mg of Tramadol about 2 to 3 times a day and Levsin before meals. Some days I am in a lot of pain. Yesterday and today I have felt good. I never know from day to day. I wish I did knew what sets this mess off. I think popcorn and nuts for me. I wonder if it really makes any difference. I wish I could stop taking the Nortriptyline. I’ve been taking Elavil or Nortriptyline for over 3 years now.
OMG!! I can’t believe that others are going through what I’m going through. I have been to Indiana Unversity (suppose to be the best GI in the county) for my second sphictoratomy still in pain and have been suggested that I get a surgery to fix the ducts??? Any clue what that might be??? I am on lots of creon that keeps me out of the hospital. . lipase is off the charts!!! love to hear more!
The surgery they are suggesting sounds like sphincteroplasty (not sphincterotomy again). The use an open incision to open the duodeneum, the ampulla of vater (where the ducts meet and converge) and the ducts themselves. They typically refashion the sphincters and sew it open in an effort to prevent reclosure. I have read cases of reclosure despite even this proceedure.
Sounds to me like you have chronic pancreatitus and/or a stenosed panceatic duct with such high lipase levels.
If this is the case, this might be your best option. Make sure the surgeon has a lot of experience in this specific proceedure – best in the country doesn’t mean much if he’s only done a few of these particular surgeries before. I’d want the number to be in the hundreds – not tens. You might want to ask about the post op preceedure as well. You’ll be in hospital for a week or more – much of that time you’ll be fed by a tube.
I sincerely wish you all the best for a favorable outcome.
For type 111 SOD it’s important for us to realise some DRs are skeptical it even exists. And there is justification – there are now quite a few studies to show folks diagnosed with SOD 111 get pain reproduction by stretching the duodeneum. I find it hard to believe that such can cause severe pain – but when you consider the SO is just a tiny muscle…imagine the whole small intestine cramping up.
What likely happens is there’s a reflex between the duodeneum (upper small bowel) wall and the SO – so irritating one triggers the other. This also explains poor response to ES surgery in many SOD 111 cases, as the SOD is a sign of an overall motility dysfunction rather than a cause.
Jame’s wife is a insiprational example of what can happen if it is the SO and you get the right doc – but this sadly seems rare.
It does now seem possible that fructose malabsorption may be at the heart of the issue causing IBS, viscreal hyperalgesia, motility disorders and even bacterial overgrowth.
The FODMAPS diet is designed to eliminate free fructose and has some success. I have not found it useful at all and I’m still not convinced my symptoms fit this picture. I did just finally get one positive test result with the hydrogen breath test indicating I cannot digest free fructose – and a high bacterial count. So this may be part of the problem.
I’m going to trial a course of antibiotics with the fodmaps diet and I’ll let you guys know the results in 4 weeks or so.
Brett, Thanks so much for the info. I think I have read almost everything about ODDI and the pancrease but don’t understand much. The doctors don’t explain much either. . I have had lipase in the 4500-1300 range for a year since my first sphincterotomy July 08. They put my in th hospital, IV, no food for 3-4 days, lipase comes down to about 500 (65 normal), I’m released, go home start eating VERY low fat, NO ALCOHOL and still end up with high lipase. Supposedly the damage to my pancrease is scored a 4 out of 9 being most damage. I was also told I have low normal pancreatic juice volumne??? and what is stenosed duct mean??? The last time I had it cut they did stent the pancrease side, it got stuck and I had to have it removed. It seems you know a lot and am SO thankful for this website. I was really thinking maybe I am mental. One more thing if you know. . . . chronic pancrease, will it heal itself after I get the ducts fixed? I pray for everyone on this site! I was told yesterday talking to my husband that doctors could be looked at like a mechanic ( of the body) there are good ones, crooked ones, experts and just plain bad ones, and you have to fight for the work to be done the right way so not to cause more damage, or something else to break. Each system in a car could be your systems. . electrical – neurological / fluids – endocrine ect. Doctors and mechanics want the easy fix and maintance package and when it gets complicated they want out then you start getting all the excuses about you making it up, them not having the time to spend. I think we all have something VERY REAL here and maybe it’s just something the doctors just have not discovered yet. They only way to see this area is by scopes or ERCP and from what I have read there is a ton of activity that goes on there to make it paossible to eat and drink ANYTHING. My short term is running out, my family doctor has been following me. I saw a specialist at OSU two weeks ago still no answer! I have left three messages and an email. This is my 3rd specialist. The first one dumped me as a patient ( on my butt). The secone one is 3 1/2 hrs away in IN. and the 3rd won’t return my calls! Brett, Thanks again so much for the info, I’m still surfing hoping I missed something.
I’m not an internal medicine specialist Mardi and it’s been decades since I covered this at university but I’ll answer what I can.
The pancreas has a whole host of important functions but the problem in our case is the emzymes it creates – like lipase for fats and amalyase for sugars, can get blocked at the outlet at the pancreatic sphincter opposite the SO, if the sphincter spasms – so blood serum levels rise.
These enzymes facilitate chemical reactions that convert one substance to another. They are powerful and must be released only in the presence of the appropriate food – think of them like acid.
If these enzymes back up, the pancreas can be damaged over time – and even digest itself in the case of necrotising pancreatitus – and chronic pancreatitus results. But this is only one possible cause, alchoholism, cancer and ideopathic (unknown) causes also exist and several types exist as well. It can be acute and temporary – mild and chronic or more severe. 4 on 9 damage sounds enough to warrent immediate attention and if a stenosed (blocked) duct is the cause (as the elevated enzymes would suggest), sphincteroplast is a comparitively easy solution.
I’m not sure regarding the capacity of the pancreaus to heal. It’s possibly IF the blocked duct was the primary cause of the pancreatitus and IF is can be completely cleared without reclosing that the pancreas will recover – or at least further progression will be halted.
I do know in a Whipple’s proceedure the entire head of the pancreaus is removed – the survivability is low after this but some patients do recover. You have nowhere near this severity of damage so I’d be optomistic.
Please keep us updated regarding you progress and I hope all goes well.
Hi all! I finally added a plug-in which will allow you to be notified via email of new comments. There’s a little box under the comment box that you can check.
I did it specifically for you guys, as no post on my blog gets nearly the comment traffic that this one does.
Let me know via the contact page if it’s not working correctly.
Thanks as always for coming here and making this such a wonderful community for SOD sufferers. I’ll do whatever I can to make it pleasant for you.
Hi Judi,
The only drawback that I have found on the new format here is that if you don’t go back over the previous posts then you might miss new ones that have been added to that post. Before they were always at the end of the “page” so you could read them. Does that make sense?
I know, which is part of the reason why I added the subscription option.
Two other ways to follow comments:
1. Check the “Recently Commented” section on the sidebar. Click the link to go right to the comment.
2. Subscribe to the RSS feed of this comment thread (which will always contain the last 10 comments) at this link.
Also, I know the comment pagination is not working right, that when you go back to older comments you can’t go forward again. I’ve reported it as a bug to the folks who designed this blog theme and they’re working on it.
I’d like to ask a few questions to the readers – specifically those with verifiable type 1 or 2 SOD – elevated enzymes and those with pain relief in type 111 following sphincterotomy or botox (however short lived).
What I want is the cases that are almost certainly due to the SO. I’m trying to see if there are some definitive ways to diagnose SOD based on symptoms alone
1. What is the location of the pain. Mostly right side or central between the strenum and belly button, or left sided.
2. Do you get diarrhea with the attacks.
3. Do opiates routinely cause an attack – morphine, codine etc.
4. Do sub lingual nitrates relieve attacks.
6. Does fiber – coconut, bran, nuts, seeds etc cause attacks.
7. Does drinking a lot of water relieve attacks.
8. Do meals – especialy larger meals, cause attacks or discomfort soon after.
There’s quite a bit of contradictory information on SOD. One guy claims typically billary pain cannot be continuous, flared with meals, occur with diarrhea or relieved by anticholenergics. This would seem to exclude most here.
I think that “one guy” is wrong about some things and I wish he could feel my type III pain everyday.
I couldn’t agree more Julie. But the guy in the article wasn’t unsympathetic, he was merely concerned about the large number of SOD type 111 patient undergoing dangerous spihincerotomies without any pain resolution and the failure to identify alternative causes.
He claims as little as 8% reported improvement with long term follow up and proposed there are other mechanisms involved that might be leading to misdiagnosis. He didn’t deny the pain levels and commented that such patinets may require high level of narcotics to control pain.
Primarily I’d like to establish if opiates are a reliable trigger for SOD 111 only or if they trigger gall bladder and visceral motility pain. I’d also like to establish if response to nitro spray is specific to SOD (it is a general smooth muscle relaxant and relieves angina pain as well). If so it may be possible to establish noinvasive diagnostic critera by assessing response to both that doesn’t risk pancreatitus.
Type 1 and 11 easily diagnosed with blood tests. I don’t think the medical profession is adequately doing the job to determine the cause and location of pain in type 111. And a diagnostic criteria guidline needs to be established.
As for wishing the doc could feel the same pain I totally sympathesize. My pain went from a tolerable average 3/10 to a 9/10 for 5 days straight following endoscopy and I can honestly say if the hospital windows would have opened I would have jumped out. I have never got in back down since and should never of had the proceedure. On the last visit the doc said he would not conside ES unless I begged and wanted to do another endoscopy – 6weeks later – because the first guy may have missed something (the first guy was a surgeon he’s was not). He got annoyed when I refused and said he uses a different anasthetic. When I asked if he could gurantee the anasthetic was the cause of the pain and what measures he could take if I got the 9/10 pain again, he declined to answer. I see a new guy next week.
I don’t think most docs can begin to comprehend the pain levels involved with this condition and I suspect most would not tolerate it for a few minutes. I would happily have my leg cut off wihtout anasthetic than endure this at it’s worst for 24 hours.
I was diagnosed with papillary stenosis/sod I in February 2009 via ercp & the pain is far less although it does still occur. When I do experience pain it is right-sided, up & under my right breast / ribcage with radiation into my upper right clavicle, sort of a boring sensation. I do NOT get diarrhea with these attacks and I have always tended towards constipation. I cannot take opiates because they make me nauseated with vomiting and occasional hallucinations. I have never tried sublingual nitrates. I don’t have much fiber in my diet (no coconut, bran, nuts, or seeds). I do eat regular oatmeal which seems to agree with me. I do not drink enough water but when I was very sick I made a very conscious effort to do so and I think it definitely kept me from having attacks and also sometimes would relieve
these attacks. If a meal is/was going to bother me I almost always notice it within a few hours. Probably the 2 biggest thing that causes my attacks is/was movement
(bending over, etc.) and dehydration.
Incidentally, who is the guy who claims biliary pain can’t be continuous, flared with meals, occur with diarrhea or relieved by anticholinergics?
Warm regards,
Brett, I would love to answer . . the location is mostly rt side under breast and radiates through to back. My main symptom before my first SO ablation was back pain. It felt like a shark had taken a bite out of my side. The bigger meals are a definite trigger, fatty and would be 3-4 hours after like clock work. I am not a water drinker but it seemed that drinking water would fill me up enough that I didn’t eat bigger meals therefore helping the pain. If I ate smaller meals all day, I could avoid much of the discomfort. Fiber didn’t seem to help and the Boost eneregy drinks made me sick, too much in them? Sorry, I seem to be going backwards. . the drugs thing. Taking the smooth muscle relaxents don’t seem to help either but when I’m in pain and take morphine it seems to make it worse. It don’t experience that with the vicodin. And lastly Yes to diarrhea after almost every meal but again if they are smaller meals throughout the day I don’t seem to be as bothered.
Answers to Brett’s survey:
1. Always rightsided.
2. Hardly ever have diarrhea.
3. Don’t take opiates because of severe nausea, vomiting side effects.
a) interesting tidbit: My very 1st acute pancreatitis episode following
ercp, my pancreatic enzymes were coming down at about 1 week into
hospitalization but they started giving me morphine for pain and the
#’s started going back up at which time they put me on tpn.
4. I don’t take nitrates.
5. None of these bring on an attack.
6. I can’t say water relieves the attack as it is occurring but I know it
helps in preventing it FROM occurring.
7. Large meals definitely contributed to attacks/pain occurring PRIOR TO MY
FEBRUARY 09 ERCP but since my ercp I haven’t had a full blown “attack”
although anything I eat causes SOME discomfort.
When my pain occurs, it is pretty much continuous, definitely flares with meals and is most certainly relieved with Levbid. As I mentioned above, I hardly ever have diarrhea.
I was diagnosed Biliary I / SO stenosis via ercp in June 09 (Dr. Freeman)
I basically stumbled across this website and I am very interested in its subject (the sphincter of oddi). I was diagnosed with papillary stenosis or SOD I via secretin
MRCP and EUS in June 2008 and again via ERCP in February 09. I am interested in any/all stories and the various doctors who are researching this subject.
I also belong to a pancreatitis/SOD website called SOPD and there are probably others here who also are members of that website. Any information that anyone here would like to share would be more than welcome ! Thanks and have a Happy 4th !!!!!!!!!!!!!
hi, just found this site. as i sit here now after midnight…i am hurting. nothing is releaving the pain. seems like i have it all the time now. i had my gb out about 13 years ago, and started having what i call “attacks” shortly after that. started having really bad ones in 2003, in 2004 after going to several different dr’s they did a ercp and the dr was able to “make” me have an attack while i was asleep on the table, he cut the sphincter muscle in half. that did the trick for a little whil, then the attack started coming back. now they are pretty bad again, its been 5 years, the pain is still in the same area, but now can be releaved a little bit by eating. thinking maybe its a ulcer…i dont know, so sick of this pain, its miserable. now my m.d. says i will need another ercp to see if its a ulcer or if there may be scar tissue around that sphincter muscle…so discouraged, its hard to get doctors to beleive you hurt so bad. i do have high tollerance for pain, had both my children with no meds, so its not that i cant take it, it just hurts, hard to breathe and it doubles me over, and thats embarassing when your out in public, i also start ALOT of belching now just as the pain begins.
Hi Janice,
Boy do you sound like me! If you have read any of the previous posts then you know my story. I sm so glad that others post there experiences on here than I can show my family members that it’s not all in my head and I’m not the only one with this problem. My son thinks that I am just popping pills and doesn’t understand the pain that this disease has. It sure helps to see it in writing from other people. I also have had 4 children with no pain meds and been bucked off and kicked by horses and just sucked it up but this pain can be unbearable at times. I had a real bad day on Friday. Seems the pain would not go away no matter what I did. I almost went to ER so they could give me a shot but I didn’t. After a major attack like that I am so sore the next day. I guess because of the spasming the spincter does it’s just like any other muscle that would be sore as well. I can usually manage the pain butn I do get severe attacks every once in a while where like Janice said it is hard to breathe and doubles you over. I hadn’t heard anyone mention about the breathing part before you Janice but that is what happens to me also. I also belch or burp and my husband thinks it’s gross but I can’t help it. I try to hide it and keep my mouth shut but it still comes out. Don’t get me wrong..my husband has been a god send through out this whole thing..going on 9 years now but I do think it is hard to fully understand the effects it has on you. I guess I wouldn’t be able to understand it either.
Brett.
I had no pain at all after my first two spincterotomies for 2 years after each one. Then the 3rd time they put the stents in and I have been in pain since. It is a very frustrating disease.
Karen,
Yep, we sound like probably have the same thing. I have never met or talked to anyone who had this mess. You know when I was a little kid, about 5-9 years old, I was sick, I remember my stomach hurting, and I would double up in a ball and rock back & forth. My parents took me to several doctors, even childrens hospital, and they done tests, and never found anything. Now I wonder if what I have now isn’t probably what I had back then, sure seems like it may very well be.
Yea, after I have attacks, I am sooo sore!! Sometimes I throw up, not what I have eaten, its sometimes air that comes out, sometimes foamy stuff, and sometimes (sorry for being gross) yellowish bile looking stuff. And sometimes when I throw up, it eases the pain. Now here lately that hasn’t eased the pain. I’m going to make a call in the am to a gastro clinic and see if I can get in, and hopefully be able to make an appointment with a doctor who will help me, and not one in just a hurry to rush me out of there, and tell me its all in my head!!
Nice talking to you Karen, keep in touch! I understand exactly how you feel.
Thanks guys. Unfortunately this only adds more to my confusion.
I also get severe attacks from changes in position/bending over and exercise. I took my nephews on a ride and was sick for 2 days after that. The burping and gas is also a big factor as well.
This doesn’t really fit with my understanding of SOD but I think what is going on is SOD can occur from duodenal irritation due to a reflex from the migrating motor complex. So doudenal distention triggers the SO spasm.
It’s hard to reconcile the cases where the pain resolved with cutting the sphinceter, came back then didn’t resolve with further cutting or senting. Either the SO was the primary source of pain but it restenoised and the cutting and stenting wasn’t effective – or there’s a secondary source that’s being missed.
My feeling is the SO is an associated source of pain in some cases and the root of the problem may be a motility disorder. The small intestine is delicately balanced, if it doesn’t sweep the bacteria out regularly they build up. So take a motility disorder and add to the picture people who don’t absorb fructose so you get bacterial “food” sticking around unabsorbed.
The bacteria build up, move from the colon up into the small bowel and produce toxins that irritate the lining producing pain. They also produce gas which causes distention and further duodenal irritation – this triggers SO spasm.
This explain was fructose mal is so common in those with IBS and other functional gut disorders. This is more or less the current theory pieced together for a few sources. I did the fructose test and had no more pain from drinking a cup full of the stuff – untill 48 hours later. So the effect may be gradual an cumulative as well and not necessarily a direct trigger. The direct triggers do so because they cause immediate spasm. I just can’t figure why being upside down or exercise kicks it off. But roughage obviously irritates the duodeneum.
Those who get pain immediatedly associated with belching and burping really need to investigate this further, as this alone is a good indicator that abdomnal distention is the primary cause. There are some good studies now where they stretch the duodenium in type 3 SOD . Over 95% got the exact pain reproduction. It also partially helps explain was ES is not very successful in helping type 111 SOD.
I do know my pain has slowly been better since I’ne been on the diet – but not miraculous. Next I want to trial the antibiotic so I’ll keep you posted.
Seem I’ve lost name of the author of the paper I referrenced. Here’s the section where he defines billary pain:
To me, “typical” biliary pain is clearly misunderstood. It is not lancinating pain lasting seconds, neither is it constant pain lasting all day, with or without exacerbations. It is not exacerbated by eating, relieved by defecation, or accompanied by diarrhea. In my experience, biliary pain rarely crosses the midline and is never a purely left-sided discomfort. Typical biliary pain does not respond to anticholinergic antispasmodics (e.g., dicyclomine, hyoscyamine), antacids, H2-blockers, or proton pump inhibitors (PPIs). In the Rome II classification of SOD, the typical pain is said to last from 30 min to several hours, with pain-free intervals between attacks (14). (In fairness, I must state here that some experts in the field consider the nature of the pain—intermittent versus constant—irrelevant to the diagnosis of SOD).
Here’s the section on type1 11 and motility disorders:
Two explanations have been offered for the poor correlation between the results of SOM and response to ES in type III SOD: (i) SOD may be a marker for—but not a cause of—pain in type III SOD patients, or (ii) SOD has a causative role in a subset of type III patients, but SOM cannot accurately detect this. Personally, I believe that many patients labeled as having type III SOD have a diffuse gastrointestinal motility disturbance, characterized by visceral hyperalgesia and intolerance of gaseous distention. Desautels et al. (23) have shown that patients with type III SOD exhibit duodenal-specific visceral hyperalgesia, with duodenal distension reproducing their symptoms. In an unpublished, retrospective review of hospitalization of type II and type III SOD patients at our institution for severe abdominal pain immediately following ERCP SOM ES, one-third had complete resolution of their pain and normal serum amylase and lipase levels the next morning: these individuals behave like they are developing PEP, but they don’t. I believe that air insufflation of the gut during endoscopy triggers a “motility storm” in these patients. Their pain is genuine and frequently requires large doses of narcotic analgesics to control. It is hard to believe that cutting the biliary sphincter will cure these individuals of their chronic pain syndromes. The best hope for them may be pharmacologic manipulation of visceral pain sensation, a science that is in its infancy but already making some impressive strides. In those whose pain truly arises from the biliary sphincter, nonablative endoscopic therapy may be feasible. Intrasphincteric nitric oxide injection has been shown to reduce sphincter of Oddi motility in an endoscopic porcine model (24), and a number of investigators have reported encouraging results from injections of botulinum toxin (BoTox™) in dogs (25) and humans (26,27). As the biliary sphincter cannot be easily defined, “blind” (four quadrant) BoTox™ injections into the papillary fold have been tried, with lasting benefit in some type III SOD patients (RA Kozarek, personal communication). However, concerns have been raised about inflammatory reaction provoked by BoTox™ injection and the risk of “late” papillary stenosis.
Brett,
It appears you have done a lot of research on All the SOD diagnoses and although I
have probably had this (SOD I) from the very beginning, I didn’t have the diagnosis until June 2008 via secretin MRCP & EUS, and again in February 2009 via ercp.
My questions are as follows: How can they claim that SOD I or papillary stenosis is
the SOD easiest “cured”, particularly when it was also noted that I have pancreatic
sphincter disease? Also, where is the pain coming from AFTER the cut (sphincterotomy)? Is it the biliary sphincter? Another thing, why do they say it takes time to “feel” better? I mean, I understand that making the cut is going to
have to heal, BUT wouldn’t you think you would feel less pressure almost immediately, particularly since my cbd was massively dilated to 2 cm and was full of little stones and sludge. Actually, I did experience COMPLETE relief for a few weeks, was even able to lay on my right side which I had not been able to do in a couple of years.
Thank you for reading this ; )
I have never heard of one SOD going into another, i.e. SOD I may be a marker for
but not a cause.
Brett,
Will you email me where you are finding information on “pharmacologic manipulation of visceral pain sensation”. My email is walker.juliea@yahoo.com. Thanks
I had my third ERCP with a stint put in last Wednesday, I was suppose to get manometrey done but the doctor decided not to since my sphinctors were open and all my blood work levels were good. I have had mild pain (which I new I would) since the procedure until last night. I was going to bed and it elevated enough for me to get up and take some more pain meds. I’m still in pain today!!! I’m very frustrated,depressed and sick of pain… Sorry for complaining I just needed to vent to people that understand.
Michele,
So sorry to hear about your pain. I was just wondering why the dr stented you when you said your spincter was open and all your blood work was fine? Did you have the duct cut with the 2 previous ERCP’S? On my 3rd ERCP I had 2 stents put in and I was in pain from then on. I rarely have a day that I don’t have any pain and thast was 2 1/2 years ago so I do know how you feel. I just had my 4th ERCP and the dr said my spincter was still open so he didn’t do anything and I have pain daily. That ’s why I was wondering why your dr stented you. Who is your dr? It is very frustrating and it gets old real fast. Hang in there though..we all know how you feel and we all come on here and vent at times!
Karen, Yes I did have them cut the last two times, and they didn’t check my levels until after the procedure, to determine if I could go home the next day. I have Dr.Freeman from the U of M (Minnesota) I tried calling them yesterday to let them know that the last two days have been bad, but I haven’t heard back yet. I use to get some relief when I would lay down and relax, but not now. I thought about it after he said he put the stint in, if the sphincter is open, but it spasms, I would think that having the stint in there would tweek it even more when it’s having a moment (as I like to call it) I’m very glad that all of us have each other to discuss this with, because people that don’t have it, just don’t understand. Even my husband, he thinks, that I look normal so I should be fine.
It seems like a lot of people on here are from the Minnesota area. I hear Dr. Freeman’s name alot on here. He must be a good GI doc. I went to my regular dr yesterday & just kinda wanted a second opinion on my pain control and she said that maybe I need something longer acting like oxycontin or methadone…well..working in a pharmacy that just freaks me out when I think of me being on those meds! I told her that the percocet is not controlling the pain like it used to and I was having to take more and more and not get the relief. I was wondering what everyone else takes for pain. If you wouldn’t mind sharing that with me then I can get some ideas to toss around when I have my next GI visit in Aug. Thanks.
Karen, He is a really good doctor. I have been on different dose levels of hydrocodone, I’m so afraid of taking pain pills, I wait until I can’t stand it anymore and then I will take them. (or break one in half and an hour later take the other half. LOL) The best I have felt since this last episode that has been going on non stop for 3 months, is when I went to my private doctor and he gave me a shot of Morphine. I was tired but very hungry and I ate without any pain it was great!!!! Dr. Freeman put me on something else for 14 days for the acid in my stomach, it starts with a P, but I can’t remember the name. I have noticed this time when I lay down I have a burning feeling in my right side. I don’t remember it doing that before.
Why do I have the same pain almost the same time everyday?
Just found this website, and so glad I’m not the only one on earth that has this. I have type 3 sod. Was diagnosed in Feb. 2000, after having my gall bladder removed, and a zillion other tests. Had a biliary sphincterotomy that yr. in Apr. I had limited relief for awhile. In Nov. of 2002 I had a pancreatic sphinc. and had some relief, but both times not complete. I went to Dr. Stuart Sherman at IU in Indy. I remember at the time he said some patients never get over this, so I’ve been living with it since. I usually alternate between Vicoden & Tramadol for pain, which usually runs in episodes from not too bad today I can live with this to pain meds everyday, I can’t take it anymore. The pressure under my lower rib cage is constant. I found out about a Dr. Saymeh in Columbus who came highly recommended by a nurse, so several months ago I called and made an app. My app. was for June 17th. I called that morning to confirm my app. and was told he left. They wouldn’t ( or couldn’) say where he went or why, just left 10 days earlier. I was devastated, I had waited 3 months to get in. I could go back to Sherman, but just did not like the man and I still have the pain, and wanted another opinion. Now I’ve heard of a Dr. Tariq Shakoor in Cincinnatti, who is suppose to do these procedures. Does anyone know anything about him? I know with this type of procedure I don’t want to go to just anyone, but after almost 10 yrs. I feel like a drug addict who still has pain, and I want complete relief, I want my life back again. I can’t even have anything tight around my waist because of the pain, does anyone have that problem with it ( along with many of the other symptoms I’ve read about) everytime I sit down I have to loosen my pants because it hurts, makes wearing panty hose a vicoden night believe me. I feel like Dr. House, I can function but need constant meds to do it. Although if I lay down it eases up, but that’s obviously not possible all the time. Would like some feedback on Shakoor. Janice
Hello everyone
My first post. I’m postcholecystectomy (26 years ago) patient with the typical SOD symptoms mentioned by most of you, with some objective findings. Having a mild symptoms on and off for many years, but recently they are getting bad.
I’m also from Indianapolis area, and looking for a decent GI doctor to replace my positively worthless one. Your recommandation would be appreciated.
Some of you did a remarkable research, and about everyone here seem to be at least well informed.
Bret, let me know if you are still interested in those answers. At one point, I thought, you no longer are.
It’s good to see, that someone is trying to figure out what’s triggering the bad, painful periods. Something interesting from my own recent experience:
In mid April I had a bad crises, when ending up at ER. Few days later, I underwent ERCP. I was slowly improving, and was happy, since I didn’t have to call off my trip to Europe. The trip took place in mid May and lasted about 4 weeks. During this trip, I was able to function reasonably well, including lot of hiking and adequate eating. After my return to theUSA, I got quickly bad from day 2. This makes me really wonder, what the heck went wrong. I was thinking maybe something was wrong in our house, or was it just the Indiana humid, cloudy climate, or what…? The change in my status was so sudden. I was not getting better, peaking about 2-3 weeks ago, when unable to put almost anything to my mouth for about 5 days, and was extremely close to ending up at ER again. Last 2 weeks, I was improving somewhat, little by little every day.
Anyway, over the time, I arrived to at least a couple conlussions:
1. The weather makes a difference. Humid/rainy weather makes the symptoms worse, sunny/dry weather makes it better
2. Among other meds, I take also Restoril in the evening. It was originally prescribed for sleeping. Restoril makes me feel way better. Sometime, I have the feeling, that after taking it, I can eat very well. Unfortunatelly, I wouldn;t take it during the day time, because I would be too sleepy.
I’ve read about some of the meds, you guys take, and I have a mixed feeling, since, they seem to help only so much, while probably you have some side effects. So, I’m still hoping to hear more of you stating, that a certain medication really helps you without paying too much of the side effects price.
BTW, has anyone tried Marinol? I haven’t. Doctors are reluctant to prescribe it, but wondring about this drug, which is supposed to improve digestion, perhaps also SOD patients (?) Just curious, if Marinol may relax the sphincter, and hence to bring good results…
Best luck to all of us!
Julie: I have a lot of articles but don’t keep web sites and don’t have the author for the one in question – let me know what you’re intersted in specifically and I’ll be happy to send it.
Peter I remain interested in your answers. Some of my posts go missing because I fail to fill in the name section first and it’s deleted. Recently I submitted a general response and it said it was submitted but I can’t find it here now. It gets a bit frustrating and I sometimes don’t bother to retype longer responses.
I saw a second GI doc today who only confirmed the first Doc. That botox was “experimental” and didn’t last and a clean cut was better.
The amazing thing is he was willing to do the ES with no further testng. He felt that SOM only increased the risk of pancreatitus which is true but most authorities say it’s essential in type 111? He seemed to think pancreatitus was no big deal so you just go in and do a cut and don’t even bother with stenting the pancreatic duct as it’s better not to mess with it.
Problem is there are some good studies to show it significantly reduces the risk. It shows you really have to do the research yourself and interview the doctors.
Furthermore blindly cutting the sphinceter in type 111 is a real crap shoot. I came across this comment recently:
“One possibility is that the origin of pain resides in the duodenum rather than or in addition to the biliary tree. For example, Desautels et al demonstrated that patients diagnosed to have SOD Type III exhibited duodenal-specific visceral hyperalgesia and that duodenal distension reproduced symptoms in all but 1 of the 11 patients
studied.[9] This observation is consistent with the concept of
visceral hyperalgesia in functional gastrointestinal disorders, which has emerged as a potentially important factor associated with the development and perpetuation of GI symptoms in affected patients.4 In this regard, several possible scenarios have been considered in some patients with both acalculous and postcholecystectomy biliary pain syndromes.
The first is that patients with SOD appear to have a higher than
expected prevalence of IBS 40 and that SOD may occur as part of a more generalized functional disorder of the gut. Indeed, other studies have found that an abnormal SO response to CCK is much more often found in patients with SOD Type III and concomitant IBS.[41] Selective treatment of the SO cannot be expected to provide symptom resolution in such patients and may account for the high failure rate of sphincterotomy
in many patients with SOD Type III.”
This makes it hard to explain those type III patients who have gotten significant relief from ES and those who get relief from nitrates.
Curiously the most severe pain I have had since this started was directly following endoscopy and duidenal biopsies.
Peter,
Dr. Stuart Sherman at IU in Indy is supposed to be one of the best for treating this condition. They teach other doctors how to do ERCP’s.
I just found this article on Medscape.
Sphincter of Oddi Dysfunction
“A Clinical Minefield With Many Unanswered Questions”
Peter B Cotton, MD, FRCP, FRCS
The article did not have any new information but for me it really re-emphasized what little information is known about some of our problems. My experience is that some GI docs. are not very upfront about this at times which is extremely frustrating.
Thanks Bedhead.
For those interested – Marinol is essentially THC – the active ingrediant in marjuana. I’m not aware of any studies showing it’s effecacy in SOD but if it works for you, go for it. Be aware of the studies showing a clear relationship to schizophrenia in susceptable individuals.
Another newer medication that might be worthy of investigation is Iberogast. It’s a compliation of various natural ingedients that apparently has clinical reserach to show it effecacy when tested against other medications. I haven’t tried it yet but it is available over the counter here in Australia
Brett is correct on Marinol.
In the US, this medication is prescribed for appetite stimulation and/or nausea in patients with AIDS or cancer (those on chemotherapy).
I wasn’t able to find out if Marinol has been used also for other digestive problems including SOD, so I guess, we just don’t know how it works for SOD…
Brett, thanks for the mention of Iberogast. I’ll try to see if it is available in US.
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