Has anyone been been told that they have Sphincter of Oddi dysfuntion? I am waiting to go to a specialist to see if this is what I have. I was just wondering if anyone has this and what thay are doing to treat this gastro problem.
Another question to add to this post: when my gallbladder was removed, my bile duct was sealed shut so it was removed as well. That would mean that nothing leads to my SOD, so that can't be my problem, right?
The other problems that I have read about is that if this problem goes untreated long enough it can shut down the pancreas and liver. I have also read that if left untreated, could be possible to get cancer of the bile duct from all of the bacteria that continues to back up when the sphincter muscle stays shut. This is only what I have read, I would suggest talking to your GI doctor to be sure. I don't want to scare you.
To answer your question from your last post. Yes, the testing for SOD is done during the ERCP W/ menometry. You should know that there are two different ERCP's. The main one is using dye to get an XRay of your bile ducts. The other is with the menometry. This one doesn't use dye only saline. I think it is saline they use. I can't imagine they would use plain water. What they do is slowly inject the saline into the bile duct. They take a reading after to measure the pressure. If you have high pressure during this reading they then make a small cut to allow more bile to flow out. If you do not have high pressure SOD is not your problem.
There are 3 different types of SOD type 1 is only the biliary pain. Type 2 is biliary pain with raised liver enzymes. Not sure what type 3 is. You have a better chance of recovering after a sphincterotomy if you have more that just the biliary pain. I have been told by my Dr that treatment for SOD with medications doesn't work for most people. Trust me I've tried them all. My liver enzymes didn't start to rise until a year after my gallbladder was taking out. go to borland-groover.com and read more about SOD. That is where I was treated. By the way when you see your Dr make sure to ask how many ERCP w/ menometry he does. It is very important you have this done by someone who has done thousands. My Dr does these daily.
I was diagnosed with SOD last May. I had the ERCP with dye and the pressure readings as well. Before the procedure, I had severe pain and my liver enzymes were elevated. Digesting anything with fat in it was nearly impossible.
My sphincter was so tight that I had many complications from the ERCP. My Dr. placed a stent in my pancreatic duct to keep it open. Unfortunately, the procedure did not work and my relief of symptoms only lasted about a month. I'll be going through the same procedure again in the spring. To answer Marlasinger's question, I'm pretty sure the pancreatic duct leads down to the sphincter of oddi.
So, pancreatitis could develop if your sphincter is bad.
I could be wrong but I'm pretty sure that's what my Dr. said.
Anyway, I wish everyone with this problem the best of luck.
It's a little muscle....but it sure does cause a lot of problems!
I have just been discharged from a 6 day hospital stay because of Pancreatitis I got after an ERCP with a spinchterotomy. If you are a female under 50 your risk for pancreatitis is higher. It is not a very pleasant experience.
So sorry to hear of your pancreatitis. I know that other people have told me that it is a very painful, horrible thing to endure. I hope that you are feeling better now. Did your ERCP show that you have SOD??
I've been through the precedure, and know it is very painful. I too developed pancreatitis. For me it was well worth it to get rid of the prior pain I had been feeling. Sorry you had to go through that. My question is: how do you feel now after the sphicterotomy? I found my pain was completely gone afterwards - except for the intestinal pain from my body getting use to the bile in my system.
Our 23 y/o daughter has spent the last 4 months in and out of the hospital with what appears to be SOD. She had pancreatitis in September and November, with her October adventure being the removal of her gallbladder. Her doc wants to do yet another ERCP next week to place a longer term stent, followed by another procedure 6 weeks later to remove it. The November pancreatitis followed ERCP with a sphincterectomy (sp?) and resulted in a 7 day hospital stay. The poor kid has missed more time at work than she has been there this fall and we are concerned at the odds for this next proposed step. Anything encouraging that any readers here might toss our way? Are we on the right track?
I too have SOD,(confirmed by high pressure readings)sphincterotomy and pancreatitis. I have had no relief from the sphincterotomy and have chronic pancreatitis. I am continuing to lose weight and have stopped eating any meat/protein and fat. I find some relief with a liquid diet. I have found that the emotional toll is just as difficult as the physical toll. I wish everyone with this problem the best.
My symptoms after gallbladder removal in June has been a pulsating pain in my upper left abdominal area that radiates straight through to my back when it is in full blown pain. The pain is constant and also goes into my shoulder blades at times. Some people complain of pain in their upper right abdominal area, but I have never had that myself. Hope this helps you.
THANK YOU FOR YOUR HELP... I HAD REMOVE MY GALLBLADDER LAST JULY, I STILL HAVING A PAIN IN MY RIGHT SIDE AND RADIATES TO MY BACK, SOME TIMES I AM NAUSEOUS AND VOMIT. THE PAIN WAS GONE THE LAST 2 WEEKS AND I WAS SO HAPPY (I STOP DAIRY PRODUCTS THINKING THAT WAS THE PROBLEM) BUT SINCE YESTERDAY IS BACK... IS NOT A STRONG PAIN... I HAVE NOT LOST WEIGHT SINCE THE SIRGURY. I HAD A CAD SCAN A MONTH AGO AND IT WAS FINE....YOU THINK IT CAN BE SOD???.... DO I HAVE TO HAVE A ERCP TO KNOW?? .... AGAIN THANKS FOR YOUR HELP!!!
My main symptoms occurred 2 years after removal of my GB. I have pain to the right of my sternum, (the exact are of my old gallbladder) within 30 min. of eating. The pain increases in intensity for the next 3-4 hours and eases off, never going completely away. Having an empty stomach can be as painful as eating a meal.I sometimes have spasms and nausea, but no vomiting. The pain goes through to my back. It is difficult to palpate the painful area since it is behind the ribs, but if you push on the ribs it can be felt. It is a pain deep in the chest. High fat foods aggrevate the problem and lying flat makes it worse. The pain frequently wakes me at night after a few hours of sleep. The only way I am aware to diagnosis SOD is an ERCP with manometry. Hope this helps.
Did you have elevated liver function tests?? The docs have taken blood almost everytime I have been in the office and so far none of my tests have been abnormal. I guess this is why they swear my problem could not be SOD. But my symptoms all point exactly to SOD. The spasm type pain, especially on an empty stomach, waking in the middle of the night with pain and severe back pain. All of these symptoms only occuring AFTER my lap cholecystectomy. My emotional state is suffering greatly. Right now, I just wish I had my gallbladder back....at least I could handle THAT pain.
My liver tests have never been elevated. Yet my pressure reading was 60 with 20-40 being normal. I feel the only way I got a diagnosis so fast was because I agreed to be in a study where you swallow the tiny camera (capsule endoscopy). The ERCP was part of the study. I have not heard the results of that and it has been 7 months. I understand what you mean about your emotional state. I was initially put on Elavil to see if it would "interrupt the pain signal", it did not. I have now been given Paxil to try for 3 weeks before going to a pain clinic.
Hi, I had my gallbladder taken out exactly 4 weeks ago today,
and ever since then i have had chronic pain.
My upper stomach hurts (feels like a burning/knawing pain) and so does my chest and back.
I had heartburn, stomach and back pain, plus nausea while i still had my gallbladder, but the pain wasn't like this, it's much, much worse now!
I had gallstones so i had to have my gallbladder taken out/plus because of the symptoms.
Well this burning pain is just constant. I just cry all the time because i'm in so much pain.
The doctors think that it must be acid reflex, so they told me to take nexium. Well that isn't helping me at all!
See before i even knew about having a diseased gallbladder i had to go to 3 different doctors before actually finding a doctor who would do some tests to see what was wrong with me. The 1st 2 doctors that i saw didn't do any tests, all they said was "oh it sounds like you have acid reflex, take the nexium".
Well the 3rd doctor finally had me have a ultrasound (which showed gallstones) plus i had a positive blood test for gallbladder disease.
Well 2 days after my gallbladder was removed, i got this non stop burning pain in my upper stomach and chest area.
It hurts to the point on where it brings tears to my eyes! :-(
I have been to the Emergency Room Twice now since my surgery (November 19th was when i had my gallbladder taken out)
and I have seen a Gastro Doctor and he had me have these tests done: "blood and urine tests, chest and stomach x-ray, EKG, scope, CT Scan, and Hida Scan" and all came up normal.
I have been on the pain medicine "Endocet" since the surgery because otherwise the pain is so darn severe that i just can't cope! :-( I told the doctors that i do NOT want to live off of pain medicines for the rest of my life! (Plus they don't work 100% anyway). Do you think that it could be the cause of "Oddi Dysfunction" Couldn't they tell by the Hida Scan tho if it wasn't working properly?
Maybe i do have a bad case of Acid Reflex?
I'm going to see a new doctor this thursday because my previous doctor just gave up on me. Plus I'm almost out of pain medicine and I wouldn't be able to cope at all without it! :-(
Sorry so Long! Kim
There is a wealth of information on the web about this disease. Just do a search on yahoo.com or google.com under sphincter of oddi dysfunction or sphincterotomy. You should come up with lots of reading material. I too have the same thing (for 4 1/2 years now.) I went from dr. to dr. only for them to tell me it was irrital bowel or acid reflux. The horrible attacks started hours after my gallbladder surgery. They always happened in the middle of the night and lasted for 5-6 hours. For 2 years I thought it was just some bad stomach flu or something. Then I had my first daytime attack 2 1/2 years ago and landed in the hospital with elavated liver enzymes. The dr suspected sod and sent me to a specialist. I had an ERCP w/manometry the reading came back ok so he did not cut the sphincter. Since then I hung in there on anti-spasm meds. and alot of tylenol. Then whammo, this year I was hospitalized 2 times in the same week with attacks of severe pain. I went back to the specialist who had performed the ERCP 2 yrs. prior, and he said I could have an esophageal motility test done or go back on the same med's that I had been on prior to my visit. He actually walked out of the room and said he didn't have time for this. I was devastated. I since went out of town to another specialist and he ran some more tests and he firmly believes that I have sod. I now have attacks that start daily and I am waiting to have an ERCP done with sphincterotomy. I am hoping that this will take away my pain, at least for alittle while. I too sleep upright in a chair and have done so for the last 2 1/2 years. Another interesting site I found was www.joplink.net, they seem to have tons of info on sod as well. I also wanted to ask you where you found info. on letting sod go on for a long time without treatment. I have been wondering about the same question.
TO LOR: did you schedule another ERCP with sphincterotomy or manometry yet? I posted back in oct. and nov. and you were trying to decide whether or not to go through it again and that your pain returned only after 6 months of relief.
Just wanted to bring you up to speed on my visit with the specialist. First of all they changed my appointment from 12/20 to 12/23 - that's why I haven't posted.
I showed up for my appointment and met with a doctor who I believe is an internist. After filling him in on the history and my current complaints he wanted to proceed with the ERCP with manometry (sp?) and see what the results were. Of course I got the same information from him that I have gathered from this board and the net and that is basically - If you have Type 3 SOD don't get your hopes up. I asked him what would happen if it was determined I had Type 3 SOD - would I have to live the the pain I have now for the rest of my life? He said we would cross that bridge when we came to it. He then did my physical examination.
He met with his "boss" - the head doctor/specialist and they both came back into the room to discuss my situation. They were happy that I was having nausea and experiencing moderate to severe pain today because that way they could see it first hand. (Unfortunately, I think it helps for them to see you in some form of pain/distress also - that way they don't automatically believe "it's all in your head").
Anyway - to put it bluntly - the two doctors did not agree on the course of action and had a "professional difference of opinion" while we were reviewing the facts of my "illness".
The specialist feels that I actually had an idiopathic acute pancreatic attack when I ended up at the ER and six days later had my gallbladder out. He doesn't feel that the gallbladder had anything to do with the pancreatitis. I asked him why I would have pancreatitis if I didn't have any gallstones and asked if that was a "weird" situation. He said that basically it was a weird situation for me to not have had any gallstones and that he felt the pancreatitis was idiopathic (sp) - no reason, just happened.
He did tell me that it seems like I have a mixture of complaints going on and he is not convinced it is SOD at this point. He feels that I may have a motility isssue so he is going to do a repeat gastric emptying study (he said most hospitals do not perform them correctly). If the gastric emptying study comes back okay then his is going to admit me for a 24 hour small bowel motility study (they put a fine wire with a camera of some kind attached at the end down through either your throat or your nose, thru the digestive system and into the small bowel and monitor your processing for 24 hours. They give you certain things to eat and take readings. If the small bowel motility test comes back okay then he will most likely proceed with the ERCP with manometry. He wants to start with the least invasive procedures first and work from front to back and not back to front. He said I was at the highest risk factor for having pancreatitis from the ERCP so if he can avoid doing the test he wants to.
This doctor is supposed to be the leading specialist in small duct pancreatitis in this area so I'm trusting in him. He told me that there is still a possibility that I have idiopathic chronic pancreatitis and did some blood work today to find out what my trypsin (sp) levels were.
He said he had 93 patients last year referred to him by gastroenterologists for SOD testing and less than one-half of them tested with high pressure readings. He said that there were quite a number of them that they wished had not had the testing done (I assumed he meant the onset of pancreatitis).
He also told me that there is a chance that if I develop pancreatitis from this ERCP there is always the chance that it will be worse thant he moderate/severe attack I had before and that really concerned him.
The internist told me that there is some new literature out there that is suggesting a link between IBS and SOD. I hadn't heard that information before so I was very interested in that as I am still on medication for IBS and the specialist told me to continue taking it. He did change my pain med from Darvocet to something I hadn't heard of - the new one isn't a narcotic and is not addictive. He wants me to try it and see what happens. The other thing he wants me to do is to take 2 Fiber Con pills four times a day and make sure that I drink 8-12 8oz. glasses of water a day. Don't ask me how I'm going to manage this one. Water makes me severely nauseas and even makes me vomit quite often. He said that the Fiber Con may very well help with the nausea from the water. He said that Fiber Con works both ways - helps when you don't have bowel movements and also helps if you have frequent loose bowel movements. This was something else I didn't know. I thought fiber made your bowels move - I didn't know it could help bind the food you are digesting and "firm" it up.
So anyway, sorry for the long post - Hope you see it. I just thought I'd let you know what my trip to the specialist entailed. I drove two hours each way for this appointment, but fortunately I wasn't disappointed. I was so scared that they were just going to send me home and either tell me it was all in my head or tell me I was just going to have to live with it. I at least feel like they listened to what was going on and are moving forward with testing. They actually told me I may very well have a combination of medical conditions, but they also told me that every condition they suspect/want to rule out is manageable.
By the way, I go back on 1/3 to have the gastric emptying study done and all my blood work should be back within a week.
If you have any questions, just let me know. I'm sure there are things we discussed that I forgot to put in here.
'm happy that finally somebody is listening to you,I know you have problems for long time... I have the same symptoms but less strong and I know how frustrated can be to go to the doctor and fell like you are getting crazy. I have a question ...have you lost weight?..... is that a typical SOD symptom? hope you can finally find what is wrong with you... let me know I'm really interested, my GT want to go for an MRI but I am brooked with all the bills of doctors... so I decide to wait...untill I have to go to ER.
Sounds like you had a full day at the doctor. I don't go to my specialist until February 26th, that is as soon as I can get in. I had another big pain attack last week, missed two days of work and still got no where with my regular gastro doctor. He told me to call my family doctor and see if there is anything else that is wrong with me. When I read your comment back to me, I have a question, are they still going to do the ercp and test you for sod ?. Aren't you tired of doctors telling you that this pain is in your head ? also, you mentioned that if you have Type 3 sod, are you just supposed to live with it? please keep me posted on your progress.
Unfortunately, I have not lost weight with all the problems I have been having. I have actually gained 23 pounds since my surgery in July. At one time I had gained even more than that. It seems strange to me that I have to be careful with what I eat compared to what I used to eat, but I gain weight. For someone who has suffered from bulimia in the past and been treated with medication that made me gain weight so I am now overweight - this has been very frustrating for me. I believe that my weight gain has a lot to do with drinking Coke just about all day. I have a problem with nausea and believe it or not Coke seems to help settle that awful "I'm going to be sick problem". Some days I even have to heat it in the microwave to flatten it out, but since I have had to give up coffee; have to very, very careful about the amount of tea I drink; and water makes me vomit - I just haven't figured out what to do yet.
I do believe that a lot of people with SOD do lose weight, but as the doctors tell me - EVERYONE IS DIFFERENT - so I try not to make a big deal out of gaining weight at this time until I have a diagnosis that is for sure!
At this point the specialist doesn't want to do an ERCP with manometry (sp?) becuase of the risks involved and the fact that I happened to be one of the people out there who are at the highest end of the risk factor. The only thing that could make my chances of getting pancreatitis higher would be if I were an alcoholic.
The specialist feels that I had an idiopathic pancreatic attack (for no reason). He doesn't feel that it was related to my gallbladder and therefore is more concerned about it returning with an ERCP than in an "average" person.
The resident I saw was ready to do a repeat CT and set me up for the ERCP, but his boss, the specialist, blocked him on it and wants to do the gastric motility testing first because it is less risky and I have some symptoms that overlap and he wants to start with the gastric emptying test first. If that is okay they will move me on to the small bowel motility test - where they insert a fine wire either down your throat or down your nose all the way through to your small bowel and monitor it for 24 hours while they feed you and according to the doctor "do other stuff" to see how you respond.
If my bloodwork, gastric emptying study and small bowl motility tests all come back fine/normal - the specialist mentioned that at that point they would most likely proceed with the ERCP with manometry.
This particular specialist is a small duct pancreatitis expert so he is very aware of the issues the ERCP can cause with the pancreas and he now feels that I most likley have chronic pancreatitis - I think that makes him want to hold off a little bit also.
He told me last year he had 94 patients referred to him for ERCP with manometry testing. Of those 94 less than 50% came back with positive results and because of that he wants to make sure that he tests only those people he feels really, really, need the testing done. He said that there were quite a few of the patients who had the testing done who ended up wishing they had never gone through with it.
I have been very luck and have not had any doctors even suggest that my pain is "all in my head". I may not have had the best of luck as far as my health goes, but I got lucky when it came to doctors. My surgeon is still following my case 5 months post operative and my GI was the one who referred me to the specialist without me even having to ask. I understand that here in Florida if you have any problems like I do Shands Hospital in Gainesville is the place to be. I've been told they can find just about anything - So here is hoping.
I go for my gastric emptying test on 1/3 and hopefully it won't take long after that to get the results so if need be I can move on with the next text.
Gainesville is a bit of a pain because it is about 2 hours and 15 minutes from where I live so I miss a day of work every time I have to go, but I work for State Farm and they have a wonderful sick policy. Unfortunately, some who are not sick take advantage of it, but it has been a life saver for me. FMLA has allowed me to protect all of my hospital stays, doctors visits, tests, and anything related to this illness so my absences cannot be held against me. I've been really lucky that way too.
I'll let you know what I find out.
Hang in there. I know what it is like to sit and wait for that appointment. I found out in early October that my visit would be until the end of December and wanted to cry becuase I was so frustrated.
The other suggestion I have is to see if your GI or your family medical doctor will give you a pain med to take when the attacks begin. That's what my GI did because he wanted me off Tylenol, Advil and Alieve so he gave me a prescription for Darvocet (without my asking) and told me not to wait for a full blown attack to take them, but to take them at the onset of an attack so that they would have a chance to work. They have helped a lot. The specialist has changed the pain medicine to a non-narcotic for me to try (I can't remember the name - it's at the pharmacy being filled), but said if I didn't like it or if it didn't work they would switch me back.
Doctors at University hospitals seems to be very up on there medications (Shands is part of the University of Florida) so I will try the new pain med and see what happens.
I'm a 39/f who had pancreatitis 3x this yr. since June, had my gallbladder removed during my 1st hosp. stay. The a week later had to go back in for an ERCP to have sludge removed from my bile duct. The night after that procedure i had a blood clot form and burst. Dr said i was the 2nd case of that in 17 yrs. Well with continuing pain, My GI DR. sent me to Charleston SC to see DR. Cotton who performmed a manometry pressure test, and found my sphinter of Oddi, completly closed off. They cut it open, cleaned it out and put in a permanent stent in, which they took out 3 weeks ago. Was doing great until 1 week ago. Pain now back right below my sternum where i always had pain. It's no where near as bad as it used to be. No nausea, well a little never any vomiting, even b4 my procedure. My enzymes all came back normal sat. when i went to an after hours clinic. Pain has gotten worse over the past few days though. I am also having alot of burping without any pain releif. Could i be gettin pancreatitis again though? If so, i guess in about another 2 weeks if i'm still hurting that i will be in the hosp. for about 3-4 days on strict IV fluids. That helped the last time i was in for pain, but no elevated enzymes which was about a month b4 my procedure.Anyway, my question is.. does this sound like chronic pancreatitis? I haven't called my GI DR yet. I don't wnat to bother him...Dawn...***@****
I go for the gastric emptying test tomorrow, but wanted to let you know what I found out today.
All my blood work was normal except for my Trypsin level which revealed that I have pancreatic insufficiency!
The doctor is out of the office until Monday, but the nurse practitioner said that she would make sure he had my gastric emptying results and my blood work on Monday and will have him review them and contact me so that they can start me on enzymes.
Even thought the specialist feels I may have more than one condition, I can't tell you how happy I was to hear this news. FINALLY, the beginning of a diagnosis!!!!!!!!!!!!!!!!
I was so pleased to hear that you are finally getting somewhere.
Please do keep me informed, I will waiting to hear from you. If you ever want to email me directly, my email address is ***@****. I would like to keep an ongoing progress report with you, I was also wondering, how old you are to be having these problems. I am 39 and feel I am very young for all the problems that I seem to be having. I am still waiting to go to Kansas City, KS to the KU Med Center for my consultation appointment to see what they think needs to be done for my possible SOD problem, I will also keep you informed. I hope that all goes well for you. Janey
A terrific web site at John's Hopkins (you'll need for the URL not to split lines when you paste it in your browser)
2) An extremely informative article in the Journal of the Pancreas on line (the citation is JOP. J Pancreas (Online) 2001; 2(6):382-400. but the link is below
My advice is that if you have recurrent pain after your gall bladder is removed, and they have done the routine GI tests(including checking to be sure stones didn't remain in the bile duct), then you should mention SOD to your GI specialist.
I went to two of them, including one listed in the NY Magazine "Best Doctor's" list, and neither even mentioned it to me, in spite of the fact that the pain began the day after my gall bladder removal and all the standard tests were normal and I had no relief from two PPIs and an H2 blocker. I had to figure it out myself by searching the medical literature on the net.
Mysteriously and thankfully, I can make my pain go away with a full glass of water or more food. (I know, sounds like ulcer pain, but a negative EGD and no relief from the acid medicines ruled this out).
I had the gastric emptying test done on 1/3 and it was "abnormal". Normal was 40-90 and I emptied at 120. The doctor has started me on erythromycin four times a day to see if this helps. Right now is he is just taking it one step at a time and trying to confirm each diagnosis with treatment as I go along. I just started the erythromycin today and I have to call in 1-2 weeks and let them know how it is working. If it doesn't seem to be doing the trick they will change the dosage. There are four different dosages, so it looks like this may be a long road. After the final dosage change, if the symptoms still have not resolved he will admit me and do the small bowel motility test.
He wants to hold off on any pancreatic enzymes at this point until he gets and handle on the motility problem.
It feels wonderful to finally have some "abnormal" test results, but unfortunately it sounds like it may still be a while before I really have a solid "here's what's wrong with you" diagnosis.
I can tell you that after two dosages of erythromycin my tummy is not happy!!!!!!!!!!
I understand about feeling like your to young to have all these problems. I'm 31 and I never imagined when these "attacks" started in March 2002 that I would still be dealing with them. I was overweight, but otherwise healthy. I had occassional migraine headaches, but have had those since I was 14.
My brother, sister-in-law, best friend, grandmother, supervisor at work and numerous other people I know have had their gallbladder removed with no subsequent problems. I just took it for granted that I would be like them. I never expected this!
I have to take FiberCon 4 times a day (2 pills at a time) and as my little sister put it - isn't that for old people! I could have throttled her - she's only 22 and is applying to medical schools. I told her to just wait!!!!!!!!!!!!!
I'll let you know what else I find out and keep me posted on what you find out. My e-mail is ***@**** if you would rather post there.
Since 1997 I've been in and out of er cuz of severe 18-22 minutes painstarts under rib cage and radiates to back and left arm. Feels like my heart!!! Had gallbladder taken out and week later pain came back. My liver enzymes r high during my attacks. They come in the middle of night most of the time. I feel like if they knocked all air out of me. After 20 nminutes pain subsides. And I don't get it again fir months. I was told this was sodd by a friend. I did some procedure to clear the bile ducts but it only alievef it a little and it was such a horrible procedure that j am scared to do it again. Do I live with the pain. Does anyone share these symptoms?
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