I’ve been quiet lately, as I haven’t been feeling great.
For years (11 to be exact) I’ve been having attacks of pain on the upper right hand side of my stomach. It happens a couple of times a year, starting with pain and pressure and fever. The fever goes away after a few hours, but then I’m in pain for days after I eat anything.
The first attack happened when we were on vacation in Las Vegas in 1994 and sent me to the emergency room. It mimics the symptoms of gallstones, so that’s what was assumed but ultrasound showed nothing so I was sent home with pain meds. Local doctor said it was reflux. Three years ago, my gallbladder was tested and found not to be functioning properly so it was removed. But I still had a few of these episodes.
A couple of years ago, I did some Googling and I suspected that the problem was sphincter of Oddi dysfunction.
Sphincter of Oddi dysfunction and papillary stenosis are conditions which occur when this sphincter (opening) mechanism is disturbed. When the hole is too tight, there is a backup of bile and pancreatic juices. This can cause pain (biliary colic). More prolonged obstruction may result in bile leaking back into the blood stream, resulting in abnormalities of the liver function tests, or even yellow jaundice (discoloration of the eyes and skin). Also, blockage to the pancreatic orifice can cause pancreatic pain or attacks of pancreatitis.
I mentioned this to the GI in Stamford and he blew it off. He said my problem was a pulled stomach muscle. The only reliable way to diagnose sphincter of Oddi dysfunction is with ERCP which is an invasive test. And it’s rare…certainly less than 4% of the general population have it from the reading I’ve done.
So fast forward to New Jersey. I’m due for a colonoscopy (joy) and I go through the prep (no joy). Somehow, drinking a gallon of Gatorade as the doc prescribed didn’t sit well with me and it brings on another attack. No fever this time, but pain on the upper right side and nausea. In the consultation with the doctor, I had mentioned my history of these attacks and he suggested doing an endoscopy at the same time as the colonoscopy as long as he was going to have me there to see what was going on. The colonoscopy was fine, but in the endoscopy he said he saw some bile in my stomach and he noted that my ampula papilla, the little hole that the sphincter of Oddi surrounds was “fibrotic” (small and hard).
3 days later and the pain doesn’t go away, so I went in for blood work which showed slightly elevated liver enzymes. Not not joy. Monday night I had a MRCP (a more advanced MRI that looks specifically at what’s going on with the liver, gallbladder & pancreas) and that was normal. So my wonderful doctor suggests sphincter of Oddi dysfunction as a likely cause of my problems. I think he was surprised that I knew exactly what he was talking about. Once I get this thing treated I’m tempted to send all the paperwork back to the doc in Stamford with a big “I TOLD YOU SO” stapled to it.
The way to diagnose and treat sphincter of Oddi dysfunction is through ERCP (Endoscopic Retrograde Cholangiopancreatography). It’s like endoscopy, in that a scope goes down the throat, but they introduce dye and watch how it moves through. Specifically when they’re looking for this condition, they test the pressure of the ampula papilla in something called sphincter of Oddi manometry. If it’s too high, they can cut the sphincter right there and it typically solves the problem. There are 3 types of SOD (explained [here](http://www.ercp.ucla.edu/pages/info/biliary/sphincter-of-Oddi-dysfunction.html)). Because I had abnormal liver functions tests, I’m either Type-I or Type-II which means that the sphincterotomy should do the trick.
The big risk in ERCP is that it can bring on an attack of pancreatitis. My doctor does ERCP, but he doesn’t have experience doing this manometry thing so he wants to refer me to someone who does (which will also give me a chance for a second opinion from someone who is familiar with this condition). Now I’m waiting for that referral. I’ll likely have the procedure done in Philadelphia or Manhattan.
[This page](http://www.joplink.net/prev/200111/04.html) thoroughly explains the problem and the treatment.
I have been to every Dr. known to man. Last year I went to a retired nero Dr. I had more phsical therapy and of course no help with pain. But the Dr there said he thinks the pain is coming from a nerve or muscle that runs from my head down to my leg. The sphincter muscle contracts or does its thing and pushes or causes the rest of me to have pain because everything is pushed so close together inside of our bodies. When I told my general Dr. what the nero Dr. said of course he blew it off. Robin
My husband has had episodes that resemble SOD since last April….had gallbladder removed about 15 years ago.
Ultrasound last April showed nothing. Had another episode in Oct. again in Dec. and again, last week. He’s now scheduled for a CAT scan next Wed.
I’m an RN and trying to do my own research online and came across your blog…….I can’t seem to find any follow up to your story. If possible, could you email me or put a new entry about if you did go to Philly or Manhattan for your procedure and how you did. Thanks so much!
I’m going to add your RSS feed to my feeder, so I can follow your blog which I enjoyed during my browsing to find an update as to how you are now medically.
All of these storys seem so fimiliar , I have been suffering with pain in my right side for years now at least 15, 2 years ago they finally removed my gallbladder , but after 2 months the pain was back , hurting in my right side liver area, feels like i have a rock between my ribs and liver, i have had slightly elevated liver enzymes ,i asked my doc about the oddi problem and he blew it off,he says when he removed the gallbladder he checked the liver and pancres and they were fine, says the high enzymes are from the tylenol i take. i am schedueled for this monday to have another scope, to remove some poylups, all i know isx it feels like the gallbladder has grown back with a vengence, pain in my back stomach and under the shoulder blade , last about a week , or if i take a laxative it seems to subside.hell i am only 44 i hate to see when i really get old .
Do any of you have this pain last 3 or 4 days after an attack, it feels like a tooth ache in my side at times, but it is funny cause when i wake in the morning i feel fine for half a day or so, then the pain starts in the lower back
it is driving me nuts.
Don’t know if this will help, but here goes. After one episode of severe bloating, my doctor and GI recommended gallbadder removal. I went through with it, but bloating continued and pain in upper right quadrant began. Sought advice from a new GI and was diagnosed with celiac disease and Barrett’s esophagus. In spite of going gluten-free, I STILL had the bloating and pain on right side. Through food elimination, I determined several food and food additive allergies that were causing the problem. After much research, have found out that food/environmental allergies can be the cause of many digestive issues. Time and time again I have read that everyone who has their gallbladder removed should take Cholacol by Standard Process (google online for source) so that your body can digest fats, something you are not able to do properly once your gallbladder is removed. I started taking Cholacol yesterday. I also take a digestive enzyme and pro-biotic. You must find an MD who is a holistic doctor rather than just an MD, because MD’s don’t have a clue about prevention and nutrition. They just know about diagnosing (and even that’s questionable) and pushing pills. You must be your own advocate. Search online until you find a solution! Blessings to all…..
Has anyone had back pain with this oddi problem my lower back and under my shoulder hurts, but it after i have been up on my feet for a while , i went through this several years ago and had my gallbladder out but the constant pain is back . Soma muscle relaxer seems to help a little , i just had a endoscope last week and the doc say all was fine , man i need some relief !!
i am wondering if this could be pancreatitis .
Back pain is one of my biggest symptom, now. One Dr. said that when the sphincter muscle contracts it touches a nerve. Some days I feel like there is a sword sticking through my spine bone and sometimes it’s the right side of my back.
Robin i have the same thing , i was just telling my wife my spine feels sore. i have not been diagnosed with oddi, but from what i am reading it sure sounds like it . i have now been in pain off and on for 2 weeks, feel fine when i wake up but after about half of the day has passed here comes the pain,and burning in the gallbladder area , where it used to be , i am wondering if it was the spintcher of oddi thing all along and not the gallbladder. heck i have been suffering with this for years now ,i just ate some smoked ham and i am hurting in my back on the right side so bad i cant stand it , feels like a baseball lodged in my back. thanks for sharing your info
Boy this sounds like everything that I have been going through! After my 4th ERCP just 3 weeks ago and dr said the spincter is still open (what a blessing) I still have the pain. He has put me on gabapentin fro the nerve pain. I take 600mg at night and 100 mg every morning and every evening. I think it has helped. I am fine in the morning but come mid-day the pain comes back and at night it canget pretty bad. I take percocet at night. My liver enzymes were fine when I was releassed from the hospital and was tested again 2 weeks ago and they were 5 times above normal. I don’t get it. Shawn I hope your wife understands what you are going though..nothing worse than having someone tell you it is all in your head. My husband has been very supportive through this. i don’t know what I would do without him.
Hey Shawn, What state do you live in? The reason I ask is someone on this(I think) or another support SOD group says there’s a good GI Dr. in New Jersey. I have even been to John Hopkins and Universitiy of MD and still not much help. I am in Maryland, which is not all that far from NJ.
Robin i am way down south in Louisiana , I think that is my problem all this spicy food here in cajun country , my side finally stopped hurting today after 2 weeks.dont know for how long but for now the pain is gone. my liver enzymes were 13 points above normal should be 55 mine was 68.We have a 2 year old baby thas has already had 2 open heart operations and needs another in a year and maybe a heart transplant , i just dont have time to be dealing with this pain
the dr put me on Miralax and another fiber he said it would work and by god it seems like it has , i was only going to the restroom about 2 times a week if that he says that is my problem , who knows.
Thanks for all your posts. I will check out the other forums/blogs/links that people have mentioned.
I was a classic case of fair, fat, 40, and female, had only 1 gall stone but got my gall bladder out in April 2006. Not sure it was the right choice but too late now. I am waiting to see the surgical consultant again about the post-gall bladder surgery pains I have been having that started in the last two months, although I have been complaining of digestive problems (including severe constipation, bloating, cramps, and hemmorhoids) since my lap surgery in April 2006. I also have stress-related (isn’t it always) gastritis and am on Pariet, one pill in the morning, as of last week for that (was on Zotrole for a year before that at night but became ineffective), which is helping a bit. I thought the gastritis diagnosis was wrong because it happened just before my first gall bladder attack; then I finally realized that I had two separate problems. I’ve also been diagnosed with IBS since I was a kid, and I’m 44 10/12ths now, so I know the difference between an IBS flareup and this pain.
Anyway, a few possibilities for me are biliary sludge, adhesion due to scarring, incision-related hernia (not likely but read about it), and SOD. Have also had surprising tenderness/pain around bellybutton area when pressed by doc last week, and was told by doc early last year that my appendix area was tender but a month later in ER was told it was fine (rumbling appendix?). Sounds like SOD is not a straightforward fix. I had no idea that the ERCP had such a high failure rate, although I’d read about the high risk of pancreatitis.
I’ve lost weight in the last three years, about 25 pounds, and dropped 3 dress sizes, which has to help. I am still a little overweight but much closer to a healthy weight. In the last 3 months, I’ve given up red meat, most pasta, bread, dairy, and junk food (I was overfond of chips and candy bars and Pepsi). Am working hard to eat more fruits and vegetables, drink water and veg and fruit juices, eat rice, spuds, healthy stir fries, grains and legumes, etc. Find it hard to give up desserts as I have a real sweet tooth, so still allow myself small bits of good-quality chocolate. Anyway, in my case, I’m going to continue working on my diet, exercise, meditation, yoga, and other natural therapies (milk thistle for liver has been suggested), though it’s ironic that this new URQ pain started AFTER I cleaned up my diet!
Could turn out not to be SOD but certainly sounds a lot like it. I know a few people who’ve had their GB’s out. I will have to ask them if they had any problems with SOD or anything similar and how they dealt with it. Hopefully, some folks have had better luck in dealing with these health issues.
Loved coming across this website. Long story short, after a few very painful episodes I had my gallbladder out in July 2008. Things went great til Nov 08, had lots of pain where my gallbladder was. Went to the er they did an u/s said they thought I still had stones in my common bile duct. They gave me some pain meds, seem to help. I was admitted to the hospital for the weekend, blood work done, mri done everything was normal no more pain and was sent home without any real answers. The surgeron who did the gallbladder said it is very rare to get them again that soon after surgery. Well lo and behold here it is March 2009 and I’m having some pain again, not quite what it was before, but still don’t know what it is. My question is if it is SOD would the pain just be a general ache in the right rib area and then sharp pain coming and going. I also suffer from IBS and have for years, but the new twist is gerd, that started after the pain came back in Nov 08. I’m at my wits end here. I’m going to see my family doc today, hopefully she will want me to do further testing as I don’t want just meds to mask pain. I want some real answers, even if it’s just that I have to live with it. I hope someone can help me. Thanks.
Well went to the doctor and much to my frustration, she basically blew me off. Said it could be gastritis, IBS of scaring causing the pain. I know what IBS feels like, this is not it. It makes no sense to be what so ever that it could be scar pain after more then 7 months. I don’t understand why this is so hard to diagnose. Any one with thoughts on this would be great. Thank you.
To Susan: I think it is still a new disease basically and most dr’s do not know much about SOD. It is very frustrating to have to deal with this and your dr is of no help. You need to find a dr that is educated with SOD and can give you some answers. I am at the point now that it is just pain management at this point and watch the liver enzymes and if they go way up again then my doc will go in and have a look to see if the bile duct is still open. I have pain that is a dull ache like you described but then it turns into like a sharp stabbing pain like there is a knife in my back in the right rib cage area. I am real good when I get up and as the day goes on then the pain gradually gets worse. Sometimes if I wait to long to eat then the pain gets very severe real fast. You just have to learn what works for you and what foods trigger an “attack”. I know I have to eat small meals about every 3 hours and not go without eating for awhile then eat a big meal. That will surely bring on an attack. I know I can’t eats nuts, green peppers, spicy foods..these are trigger foods for me. I am taking gabapentine in the morning and at midday (100mg) then 600 mg at night for the nerve pain and this has helped alot. I have alot fewer big attacks now. I hope this helps you a little. I know each person is different but I would definitely go see a doc that will listen to you. You have that right. One thing I have learned through the 10 yrs that I ahve had this is..you have to be your own advocate for your health. If you don’t speak out then people..dr’s..etc. will just blow you off. I asked one dr one time..What would happen if I just never said anything about this and he said that my liver would chirrosis and I would die..plain and simple. So speak out loud and make your dr’s listen to you. I know it is very frustrating and I am so glad to have found these discussion boards to help vent and answer questions. Take care and god bless.
Karen, thank you so much for the information. I have learned alot from this boards. When I went in today, I didn’t want the doctor to think it was all in my head and that just because I looked things up in the net that it was what I had. It’s just with all my symptoms it really sounds like the begining of sod problems. I hope that I can find someone educated about it. I know I really appreciate everyone sharing their experiences, it helps to know that I’m not the only one going through this. Again thank you for the input
Karen, I really know how you feel. Some days I feel pretty good and thank Godthe other days I cry because I feel like no one (Doctors) even know how I feel. For the last 3 years I feel like I am having a nightmare and I pray I will wake up soon. I ate some almonds last week and I hurt so bad I just wanted to die! I should have known better than eat them. Every time I go to a new or different Dr. they act like they are real concerned, but after my blood work comes back and nothing shows up they think it’s stress. I really have a very good life. The thing I’m stressed about is that the Dr. won’t try to help me.
My liver function tests came back normal. Not surprised, but it still doesn’t answer the question of what is wrong with me. Tomorrow I will call for a referal to a gi doc. Maybe, just maybe I can get some answers. I know this won’t make the pain go away, but at least I will know what is going on. I want further dianostic testing done and I will push and push till some one gives me an answer that makes some sense. Robin I hope you can find some one to help you and take you seriously. I know stress can do all sorts of things to the body, but constant pain isn’t one of them. I think the pain causes the stress and then makes the stress worse. If the pain was treated first then the stress wouldn’t be so bad. Good luck.
Hi, I noticed that most SOD patients are felmale. Doctors are currently investigating this diagnosis for our 25 year old son who is currently hospitalized (9th day) with elevated liver functions and is jaundiced. He had his gallbladder removed when he was 19 and has had attacks since then. Are there any men out there with this condition? Also has anyone had to have a liver biopsy for this? An ERCP is also possible but waiting for the MRCP results.
Hi Lynn,
Shawn that has recently posted is a male and has shared some of his experience. I hope that your son gets better soon. I have had a liver biopsy done. Mine came back normal. I have been diagnosed with SOD about 10 years ago now and have had 5 ERCP’s done. 3rd one they put stints in the bile duct to keep it open and then 3 months later removed them. Do you know how elevated his liver enzymes were? Has he been on meds for his attacks at all? What is the dr thinking it is? I can tell you that the liver biobsy they did on me was pretty barbaric. I had no sedation at all..just a little numbing of my skin where the needle went in. I would encourage you to have the dr sedate him if he needs to have this done. I will never go through that again without being sedated first. The ERCP’s are not bad at all. You don’t remember anything. Good luck to you .
Well the darn pain is back thought it was gone for a while .i ate some sausage pasta with tomato sauce and woke up in pain.bad pain in the right back and under the last rib on the right.Choclate and spicy food really set this off i am learning. i can now actually feel the spasam in my side when it contracts.also a burning sensation and pain in my back close to the spine this is some weird stuff lol .But i have had this for years .
Lynn i had my gallbladder out 2 years ago last month , i am 44 now the gallbladder pain has never went away, i now think it has been sod all along
i asked my dr about sod but he didnt say much. he tells me i dont go to the bath room enough and put me on miralax and i have to say it has helped, my enzymes were elevated last blood test which was 2 weeks ago they should run around 55 mine was 68. but with sod they dont get too high unless it has affeceted the pancreas , google spintcher of oddi it will give you lots of info , i will say a prayer for your son, does he drink alot of soft drinks i did and the dr made me quit and that has also helped alot !!!
When I had my last blood work done my levels were really elevated..ALT was 198 and AST was 136. I know that they have never been this high unless I had the stints in..which I don’t now. My regular doc said it is probably from the ERCP I just had dne the previous week. I called my GI doc and his nurse told me my levels were normal in the hospital right after the ERCP. So..got me why they went up so high so fast. Nobody seems to excited about it though. They just say..”We’ll retest in 2 months”. So I am very frustrated right now. Like many of you I cannot get any answers. Susan good for you for asking for more tests. I hope that you find a good GI doc.
Karen, I called the dr for a referal April 6 is the soonest I can get in with a gi dr. In the mean time if I sit still not so bad, just an ache that won’t completely go away. Which is hard to do with 3 kids of my own, and 4 day care kids. Well wish me luck, and thanks for letting me vent. It really does help.
Susan,
I am glad that you got a referral from your doc to a specialist. I will be anxious to hear what they have to say. Boy..you have your hands full! Where are you located if you don’t mind me asking? It is always good to have a place to vent and people that understand what you are going through! Anytime!
Karen, I live in NH. Today I’m feeling better, keep thinking maybe it might be a pulled muscle, but then I think back to the pain I had in Nov and think probably not. I’m glad I’m feeling better, but I still want to know why I had so much pain to begin with. So at this point I’m still keeping my appt with the gi dr. I really just want to get to the bottom of this. I don’t want to have to go through all the prodcedures that have been described by everyone else and all problems that go along with it. Thank you for your concern. It helps tremendously.
Karen, finally got the dr to give me something for the pain. BIG big mistake, ended up in the er last night for several hours after having excruciating(sp) pain. I am scheduled for an u/s today. All my blood work came back fine last night, so it makes so sense to me why so much pain. I don’t mean to be such a whiner or anything, but I’ve had enough. I did read that taking pain meds can leave you in extreme pain. I took only 1 tylenol 3 and boy did I pay for it. Any other suggestions for what else I should talk to my doctor about today would be so much appreciated from anyone. I just want them to believe that it’s not gastritis. Thanks again
Hi Susan, I’m so sorry that you had to go through that last night. You might want to talk to your doc about something other than “Pain meds” to try. My dr has tried like a smooth muscle relaxer..I couldn’t take them but he said they have helped other people. You might want to ask him if you could try like tramadol. It is a non-narcotic pain med that helps me. Please keep in mind that I am not a dr..just telling you what has worked for me. Hopefully you will get answers. Gabapentin also has helped me. It is for nerve pain. Good luck today!
Karen, I hope all is going well for you. Today seems to be a good day for me so far. I’ll keep up the good thoughts for you and everyone who is going through this. Take care
Hi Susan,
I had a pretty rough night last night but am doing better today. Thanks for the well wishes. How did your talk with the dr go on Friday? Robin and Shawn how are you guys doing? I hope everyone else is doing well..would love to hear from everyone!
Karen i am doing fine , the pain is gone for now , i just ate a big gresy hamburger i am sure i will pay for it . I tell ya i think the miralax and my stopping the cokes all day every day has helped, maybe my doc was right this time . hope you all are doing fine.
Thanks for asking, Karen, Today I was pretty good. I have taken one Tramadol thisafternoon around 12 and then another at 7pm. I also take levsin for spasmsbefore I eat. Sometimes when I guess the sphintcer moves, it almost feels like it shakes my body. I think the levsin helps with that. I go back to the pain management Dr. on Tuesday. She told me if I am doing good with these meds she will release me and I will have to call in for refills on my pills. I guess this is a way of saying I’ve done all I can. I guess I’m better than I was last year at this time. I guess I will E-mail my Dr. at John Hopkins and tell him whats been happening and about the pain management, I haven’t talked to him since I’ve been going. If I listened to him I would still be in a lot of pain, he gave me Librax, this did not help at all.
Oh yea and Shawn, Since I’ve had SOD I can’t drink any kind of soft drinks. I use to drink diet cokes and I liked beer with pizza, but I can’t drink anything with carbornation.
Hi Karen, sorry to hear you had a bad night. When I talked to the dr, on friday, she seemed pretty stumped as to what was going on. I had the u/s done on friday morning. I haven’t heard anything back, I’m sure I won’t till Mon or Tues. Some how I don’t think it will show any thing at all. Not so great on Saturday, just a feeling of tiredness and no energy, then I ate a simple dinner and wham it hit me again. Not so much to send me to the er but close. Mostly I didn’t go was because I knew they couldn’t help me. Still I’m going to call her on Mon and have HER do some research on sod, see what she comes up with. I just want some answers. To everyone is it caffenie(sp) or just soda that seems to be a trigger? Take care and hope you feel better (or at least as much as you can) soon. Well wishes are still with you all.
I am scheduled for an ERCP on March 23, 2009. I have thought long about this decision, but still wonder if I should go through with it. I had my gallbladder removed in September 2005. I would have done anything to relive that pain, and was told it was diseased anyway. Things were fine until May 2007, when I had an attack while out of town. Actually, three days worth of painful attacks. I went to the ER upon my return home, and had elevated liver enzymes and the dilated bile duct. I then sought out a GI. He quickly diagnosed SOD, after MRI’s, endoscopy and the like, but I reluctant to go forward with the manometry. Three more “attacks” later (each lasting a few days), I was back in his office. This time, I had some new symptoms: very, very painful inflammation of the intestines, bloody stools, etc. After a colonoscopy, an endocscopy, sonogram, even biopsies, it was determined that I had a mild case of Crohn’s! I was shocked. As a 39 year old woman, a diagnosis of Crohn’s seemed out of place not to mention completely inconsistent with my history. I had never, ever had problems with my stomach or bowels – UNTIL the infamous I am scheduled for an ERCP on March 23, 2009. I have thought long about this decision, but still wonder if I should go through with it. I had my gallbladder removed in September 2005. I would have done anything to relive that pain, and was told it was diseased anyway. Things were fine until May 2007, when I had an attack while out of town. Actually, three days worth of painful attacks. I went to the ER upon my return home, and had elevated liver enzymes and the dilated bile duct. I then sought out a GI. He quickly diagnosed SOD, after MRI’s, endoscopy and the like, but I reluctant to go forward with the manometry. Three more “attacks” later (each lasting a few days), I was back in his office. This time, I had some new symptoms: very, very painful inflammation of the intestines, blood stools, etc. After a colonoscopy, an endocscopy, sonogram, even biopsies, it was determined that I had a mild case of Crohn’s! I was shocked. As a 39 year old woman, a diagnosis of Crohn’s was out of context, not to mention inconsistent with any of my medical history. I had never, ever had any problems with my stomach, bowels, or digestive system UNTIL the infamous cholecystectomy in 2005. I submitted to a Prometheus blood test, which did not come back positive for Crohn’s. I suggested a link between the gallbladder removal and these new “Crohn’s-like” symptoms, which my doctor quickly dismissed. This past week I had a mild case of these symptoms which didn’t result in a full-blown attack – but I am always waiting for it. two weeks ago, I stopped taking my Prevacid and Carafate, after I had an odd case of hives on my face, which are both potential side effects for these meds (and they should never be taken together – who knew?) – but it was odd because I had taken these for months without any reaction. The pain was unbearable, though I managed to get the other symptoms under control.
I am torn about wanting to feel “normal” again and subjecting myself to a possibility of pancreatitis.
Hi May,
If you are asking should you have the ERCP then I can only tell you that if I had it to do over again then I definitalely would. After my first ERCP with spincterotomy (cutting of the spincter muscle) I was pain free for about 2 years with no meds or anything! If your doc wants to do the manometery then I would have him do that . That would tell them for sure if the pressures are normal or not and whether or not to cut the muscle. I have had 4 ERCP’s and have never had pancreatitis. You have to answer that for yourself though and do what you think is right, I am just sharing my experiences with you.
Karen,
Thanks for your insight. My doc believes that I am Type I, even without a manometry, but definitely a Type II, based on the elevated liver enzymes, pain, and dilation of the common bile duct. It’s nice to hear from someone who has had the ERCP and sphincterotomy with a positive outcome. I suspect those who have had positive experiences may not feel as compelled to write, but I am hopeful that my procedure will be successful. The episodes are occurring more frequently now, and I still haven’t figured out what my triggers are, except that I need to eat small meals more often.
A friend of mine at work told me not to second guess myself too much, since the decision had already been made. Your email was helpful.
I think it’s hard for people to understand the pain, and as women, we can deal with a lot of it (no offense guys – I think we’re just programmed that way.) It’s getting more difficult though.
Still not entirely sure, but I am most likely going through with it. Keep your fingers crossed, and I promise to post the results – positive or negative.
Thanks to everyone who posts here and elsewhere – SOD has a voice!
Amy T, wishing you the best of luck and hoping you have a positive outcome. I wish I had a doc as understanding as you seem to. I’m still waiting to see the gi guy. What I have read here does help quite a bit. I know I can go in with information, especially what it isn’t. If that makes sense. Karen my thoughts are with you and hope you are having good “days”. I say it that way because I know even the good ones can be sometimes not so good.
I am 24 years old. Until January of this year (only about a month and half ago) I felt completely healthy and normal. I hadn’t even had a cold for a few years it seemed. To make a long story short, I started to feel unwell and made a round of visits to doctors for tests. I suspected I had an ulcer. After having a barium xray (or upper GI) they ruled that out as it came back normal. I was then scheduled for a HIDA scan. I really didn’t think my gallbladder was the problem as I have never experienced the pain that most people complain about. My results came back: dysfunctional gallbladder at 26%. I was relieved to know the problem (although mine doesn’t seem to be a “classic case.”)
I am scheduled to have my gallbladder removed on April 2nd laparoscopically. The surgeon assured me that this is a common procedure and most people lead normal lives without a gallbladder. He told me we didn’t have to do it now, but that my gallbladder wasn’t going to get better. So I scheduled the surgery.
After reading all of your comments about SOD I’m really concerned about this happening to me after I get my gallbladder out. It seems so many of you have had this happen to you after the gallbladder removal.
I wonder many things: what is the chance of getting SOD after gallbladder removal, will my chance be less as I’ve never had pain from my gallbladder, if I remove my gallbladder will I be doomed to a life of pain and hospital visits? I know this isn’t a gallbladder removal forum but I can’t ignore how many of you have had your gallbladders out and then started having these troubles which turned out to be SOD. Does anyone have any advice or experience to share? I’m very scared now.
Jessica,
The estimates that I have seen regarding complications after GB removal range from 2-20%, SOD is probably a subset of that. Most people that I know who have had their GB’s removed have no problems at all. Foods that cause problems, that wreak havoc on the bowels, but that’s all I have heard.
The most traumatic result of not removing a diseased GB is that it bursts, which rarely has a positive outcome.
Then again, I am not familiar with alternatives to GB removal, and didn’t research these prior to my cholecysectomy. I am sure they exist. I often wonder about what would happened if I didn’t elect the surgery – but I can’t dwell on it.
Good luck to you.
Amy,
If you are Type I or II then I would not hesitate to have the ERCP done with maybe spincterotomy because you have to get the liver enzymes back down. I always said that I could always manage the pain but if my enzymes started to go up again then I needed to have another spincterotomy. Does your doctor think that would make your emzymes return to normal? I have had the spnicter muscle cut 3 times..well after the first one I was in no pain at all for 2 years..then had it cut again. .then pain free for another 2 years..no problems. Back to work in two days. then the third time the dr cut it and put in 2 stents. That was very painful. I left them in for three months then another ERCP to remove the stents. I have not been pain free since. So I am not sure what the next step is. But if you can possibly be pain free for a spell then I would try it. It was totally worth it to me.
Susan..thanks for your kind thoughts and prayers. I do have good days & bad days but I thank the Lord that I am still able to work and golf with my husband and enjoy life. I work in a pharmacy so I see people alot worse off than me every day and realize that I am still very lucky even though I have this “disease” to live with. I still do get down and very frustrated at times. It seems like my dr doesn’t know what to do with me now so I ‘m not sure what the next step is. I found a website that is doing a study on patients with SOD if anyone is interested in participating I can give you the website..I would do it in a heartbeat but they said it is to find out if spincterotomy is really beneficial and since I have already had 4 of them I do not qualify. I was hoping to find more answers but I am beyond the realm that they are studying.
Jessica I can tell you that I know alot of people that have had their gallbladders out and not one of them have had any problems since. I think I read somewhere that only 4% of the population have SOD. Seems like alot more to me! That is pretty good odds though. you have to have your gallbladder out. I’m sorry there are no guarantees that you won’t get SOD but if you do it is not a death sentence. It is liveable..just look at all of us!! We will help you through it! I am just sorry you have to have these problems at such an early age. Mine didn’t start until I was 40. I will be thinking about all of you..
Karen,
Would you please give me the website of the study of SOD patients? I went to my pain management Dr. and still on the same meds, Tramadol, Nortripaline and Levsin. I have had only 1 ERCP and Sphincterotomy done 2 years ago at the University of Maryland Medical Center and I didn’thelp at all. I’m tired of Dr. telling me my pain must be coming from something else. It’s the same pain I had before the ERCP and Sphincterotomy and the Dr. said it was SOD, my pressures were very high. I don’t know if I would even want another ERCP and Sphincterotomy, I haven’t heard of anyone having success and no pain afterwards.
Hey Robin..Sure… The website is ClinicalTrials.gov and search for EPISOD. (Evaluating Predictors & Interventions in Sphincter of Oddi Dysfunction) I think you should find it then. It says they are doing the study in 6 different locations throughout the U.S. They include Alabama, Indiana, Maryland, Minnesota, South Carolina and Washington. I don’t know if you would qualify if you’ve had an ERCP with sphincterotomy or not but it wouldn’t hurt to call them. I guess I was real lucky to have no pain for two years each after my first 2 ERCP”S and sphincterotomy’s . I kept thing that it would go on and on like that but it didn’t. Robin do you know how your liver enzymes are? If they are elevated then maybe your dr would know it was your sphincter again? Have you had them tested lately?
I haven’t had my liver enzymes checked for a while. The Dr. who first thought it might be SOD was the Dr. who did the surgery (gall bladder), then my enzymes were elevated. Even since the Ercp my enzymes were only elevated a little. I am going to write or Email my Dr. at John Hopkins just to let him know that No, I did not get better and I’m seeing a pain management Dr. I haven’t been in touch with him in almost a year because I feel like I’m going around in circles. So far the pain Dr. is the only one who has helped. No other Dr. has gave me anything for pain except, Elavil that didn’t help after a while. Thanks for the web site, I will check it out.
I've been blogging here since January 2003, on whatever topics are in front of me at the moment.
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I have been to every Dr. known to man. Last year I went to a retired nero Dr. I had more phsical therapy and of course no help with pain. But the Dr there said he thinks the pain is coming from a nerve or muscle that runs from my head down to my leg. The sphincter muscle contracts or does its thing and pushes or causes the rest of me to have pain because everything is pushed so close together inside of our bodies. When I told my general Dr. what the nero Dr. said of course he blew it off. Robin
My husband has had episodes that resemble SOD since last April….had gallbladder removed about 15 years ago.
Ultrasound last April showed nothing. Had another episode in Oct. again in Dec. and again, last week. He’s now scheduled for a CAT scan next Wed.
I’m an RN and trying to do my own research online and came across your blog…….I can’t seem to find any follow up to your story. If possible, could you email me or put a new entry about if you did go to Philly or Manhattan for your procedure and how you did. Thanks so much!
I’m going to add your RSS feed to my feeder, so I can follow your blog which I enjoyed during my browsing to find an update as to how you are now medically.
All of these storys seem so fimiliar , I have been suffering with pain in my right side for years now at least 15, 2 years ago they finally removed my gallbladder , but after 2 months the pain was back , hurting in my right side liver area, feels like i have a rock between my ribs and liver, i have had slightly elevated liver enzymes ,i asked my doc about the oddi problem and he blew it off,he says when he removed the gallbladder he checked the liver and pancres and they were fine, says the high enzymes are from the tylenol i take. i am schedueled for this monday to have another scope, to remove some poylups, all i know isx it feels like the gallbladder has grown back with a vengence, pain in my back stomach and under the shoulder blade , last about a week , or if i take a laxative it seems to subside.hell i am only 44 i hate to see when i really get old .
Do any of you have this pain last 3 or 4 days after an attack, it feels like a tooth ache in my side at times, but it is funny cause when i wake in the morning i feel fine for half a day or so, then the pain starts in the lower back
it is driving me nuts.
Don’t know if this will help, but here goes. After one episode of severe bloating, my doctor and GI recommended gallbadder removal. I went through with it, but bloating continued and pain in upper right quadrant began. Sought advice from a new GI and was diagnosed with celiac disease and Barrett’s esophagus. In spite of going gluten-free, I STILL had the bloating and pain on right side. Through food elimination, I determined several food and food additive allergies that were causing the problem. After much research, have found out that food/environmental allergies can be the cause of many digestive issues. Time and time again I have read that everyone who has their gallbladder removed should take Cholacol by Standard Process (google online for source) so that your body can digest fats, something you are not able to do properly once your gallbladder is removed. I started taking Cholacol yesterday. I also take a digestive enzyme and pro-biotic. You must find an MD who is a holistic doctor rather than just an MD, because MD’s don’t have a clue about prevention and nutrition. They just know about diagnosing (and even that’s questionable) and pushing pills. You must be your own advocate. Search online until you find a solution! Blessings to all…..
Has anyone had back pain with this oddi problem my lower back and under my shoulder hurts, but it after i have been up on my feet for a while , i went through this several years ago and had my gallbladder out but the constant pain is back . Soma muscle relaxer seems to help a little , i just had a endoscope last week and the doc say all was fine , man i need some relief !!
i am wondering if this could be pancreatitis .
Back pain is one of my biggest symptom, now. One Dr. said that when the sphincter muscle contracts it touches a nerve. Some days I feel like there is a sword sticking through my spine bone and sometimes it’s the right side of my back.
Robin i have the same thing , i was just telling my wife my spine feels sore. i have not been diagnosed with oddi, but from what i am reading it sure sounds like it . i have now been in pain off and on for 2 weeks, feel fine when i wake up but after about half of the day has passed here comes the pain,and burning in the gallbladder area , where it used to be , i am wondering if it was the spintcher of oddi thing all along and not the gallbladder. heck i have been suffering with this for years now ,i just ate some smoked ham and i am hurting in my back on the right side so bad i cant stand it , feels like a baseball lodged in my back. thanks for sharing your info
my wife thinks its all in my head LOL boy dont i wish , then it would be easy to fix
Boy this sounds like everything that I have been going through! After my 4th ERCP just 3 weeks ago and dr said the spincter is still open (what a blessing) I still have the pain. He has put me on gabapentin fro the nerve pain. I take 600mg at night and 100 mg every morning and every evening. I think it has helped. I am fine in the morning but come mid-day the pain comes back and at night it canget pretty bad. I take percocet at night. My liver enzymes were fine when I was releassed from the hospital and was tested again 2 weeks ago and they were 5 times above normal. I don’t get it. Shawn I hope your wife understands what you are going though..nothing worse than having someone tell you it is all in your head. My husband has been very supportive through this. i don’t know what I would do without him.
Hey Shawn, What state do you live in? The reason I ask is someone on this(I think) or another support SOD group says there’s a good GI Dr. in New Jersey. I have even been to John Hopkins and Universitiy of MD and still not much help. I am in Maryland, which is not all that far from NJ.
Robin i am way down south in Louisiana , I think that is my problem all this spicy food here in cajun country , my side finally stopped hurting today after 2 weeks.dont know for how long but for now the pain is gone. my liver enzymes were 13 points above normal should be 55 mine was 68.We have a 2 year old baby thas has already had 2 open heart operations and needs another in a year and maybe a heart transplant , i just dont have time to be dealing with this pain
the dr put me on Miralax and another fiber he said it would work and by god it seems like it has , i was only going to the restroom about 2 times a week if that he says that is my problem , who knows.
also i had to give up my cokes i was drinking a case or 2 a week
Hi everyone,
Thanks for all your posts. I will check out the other forums/blogs/links that people have mentioned.
I was a classic case of fair, fat, 40, and female, had only 1 gall stone but got my gall bladder out in April 2006. Not sure it was the right choice but too late now. I am waiting to see the surgical consultant again about the post-gall bladder surgery pains I have been having that started in the last two months, although I have been complaining of digestive problems (including severe constipation, bloating, cramps, and hemmorhoids) since my lap surgery in April 2006. I also have stress-related (isn’t it always) gastritis and am on Pariet, one pill in the morning, as of last week for that (was on Zotrole for a year before that at night but became ineffective), which is helping a bit. I thought the gastritis diagnosis was wrong because it happened just before my first gall bladder attack; then I finally realized that I had two separate problems. I’ve also been diagnosed with IBS since I was a kid, and I’m 44 10/12ths now, so I know the difference between an IBS flareup and this pain.
Anyway, a few possibilities for me are biliary sludge, adhesion due to scarring, incision-related hernia (not likely but read about it), and SOD. Have also had surprising tenderness/pain around bellybutton area when pressed by doc last week, and was told by doc early last year that my appendix area was tender but a month later in ER was told it was fine (rumbling appendix?). Sounds like SOD is not a straightforward fix. I had no idea that the ERCP had such a high failure rate, although I’d read about the high risk of pancreatitis.
I’ve lost weight in the last three years, about 25 pounds, and dropped 3 dress sizes, which has to help. I am still a little overweight but much closer to a healthy weight. In the last 3 months, I’ve given up red meat, most pasta, bread, dairy, and junk food (I was overfond of chips and candy bars and Pepsi). Am working hard to eat more fruits and vegetables, drink water and veg and fruit juices, eat rice, spuds, healthy stir fries, grains and legumes, etc. Find it hard to give up desserts as I have a real sweet tooth, so still allow myself small bits of good-quality chocolate. Anyway, in my case, I’m going to continue working on my diet, exercise, meditation, yoga, and other natural therapies (milk thistle for liver has been suggested), though it’s ironic that this new URQ pain started AFTER I cleaned up my diet!
Could turn out not to be SOD but certainly sounds a lot like it. I know a few people who’ve had their GB’s out. I will have to ask them if they had any problems with SOD or anything similar and how they dealt with it. Hopefully, some folks have had better luck in dealing with these health issues.
collene what part of Ireland are you in , my farther is from Cork
Loved coming across this website. Long story short, after a few very painful episodes I had my gallbladder out in July 2008. Things went great til Nov 08, had lots of pain where my gallbladder was. Went to the er they did an u/s said they thought I still had stones in my common bile duct. They gave me some pain meds, seem to help. I was admitted to the hospital for the weekend, blood work done, mri done everything was normal no more pain and was sent home without any real answers. The surgeron who did the gallbladder said it is very rare to get them again that soon after surgery. Well lo and behold here it is March 2009 and I’m having some pain again, not quite what it was before, but still don’t know what it is. My question is if it is SOD would the pain just be a general ache in the right rib area and then sharp pain coming and going. I also suffer from IBS and have for years, but the new twist is gerd, that started after the pain came back in Nov 08. I’m at my wits end here. I’m going to see my family doc today, hopefully she will want me to do further testing as I don’t want just meds to mask pain. I want some real answers, even if it’s just that I have to live with it. I hope someone can help me. Thanks.
Well went to the doctor and much to my frustration, she basically blew me off. Said it could be gastritis, IBS of scaring causing the pain. I know what IBS feels like, this is not it. It makes no sense to be what so ever that it could be scar pain after more then 7 months. I don’t understand why this is so hard to diagnose. Any one with thoughts on this would be great. Thank you.
To Susan: I think it is still a new disease basically and most dr’s do not know much about SOD. It is very frustrating to have to deal with this and your dr is of no help. You need to find a dr that is educated with SOD and can give you some answers. I am at the point now that it is just pain management at this point and watch the liver enzymes and if they go way up again then my doc will go in and have a look to see if the bile duct is still open. I have pain that is a dull ache like you described but then it turns into like a sharp stabbing pain like there is a knife in my back in the right rib cage area. I am real good when I get up and as the day goes on then the pain gradually gets worse. Sometimes if I wait to long to eat then the pain gets very severe real fast. You just have to learn what works for you and what foods trigger an “attack”. I know I have to eat small meals about every 3 hours and not go without eating for awhile then eat a big meal. That will surely bring on an attack. I know I can’t eats nuts, green peppers, spicy foods..these are trigger foods for me. I am taking gabapentine in the morning and at midday (100mg) then 600 mg at night for the nerve pain and this has helped alot. I have alot fewer big attacks now. I hope this helps you a little. I know each person is different but I would definitely go see a doc that will listen to you. You have that right. One thing I have learned through the 10 yrs that I ahve had this is..you have to be your own advocate for your health. If you don’t speak out then people..dr’s..etc. will just blow you off. I asked one dr one time..What would happen if I just never said anything about this and he said that my liver would chirrosis and I would die..plain and simple. So speak out loud and make your dr’s listen to you. I know it is very frustrating and I am so glad to have found these discussion boards to help vent and answer questions. Take care and god bless.
Karen, thank you so much for the information. I have learned alot from this boards. When I went in today, I didn’t want the doctor to think it was all in my head and that just because I looked things up in the net that it was what I had. It’s just with all my symptoms it really sounds like the begining of sod problems. I hope that I can find someone educated about it. I know I really appreciate everyone sharing their experiences, it helps to know that I’m not the only one going through this. Again thank you for the input
Karen, I really know how you feel. Some days I feel pretty good and thank Godthe other days I cry because I feel like no one (Doctors) even know how I feel. For the last 3 years I feel like I am having a nightmare and I pray I will wake up soon. I ate some almonds last week and I hurt so bad I just wanted to die! I should have known better than eat them. Every time I go to a new or different Dr. they act like they are real concerned, but after my blood work comes back and nothing shows up they think it’s stress. I really have a very good life. The thing I’m stressed about is that the Dr. won’t try to help me.
My liver function tests came back normal. Not surprised, but it still doesn’t answer the question of what is wrong with me. Tomorrow I will call for a referal to a gi doc. Maybe, just maybe I can get some answers. I know this won’t make the pain go away, but at least I will know what is going on. I want further dianostic testing done and I will push and push till some one gives me an answer that makes some sense. Robin I hope you can find some one to help you and take you seriously. I know stress can do all sorts of things to the body, but constant pain isn’t one of them. I think the pain causes the stress and then makes the stress worse. If the pain was treated first then the stress wouldn’t be so bad. Good luck.
Hi, I noticed that most SOD patients are felmale. Doctors are currently investigating this diagnosis for our 25 year old son who is currently hospitalized (9th day) with elevated liver functions and is jaundiced. He had his gallbladder removed when he was 19 and has had attacks since then. Are there any men out there with this condition? Also has anyone had to have a liver biopsy for this? An ERCP is also possible but waiting for the MRCP results.
Hi Lynn,
Shawn that has recently posted is a male and has shared some of his experience. I hope that your son gets better soon. I have had a liver biopsy done. Mine came back normal. I have been diagnosed with SOD about 10 years ago now and have had 5 ERCP’s done. 3rd one they put stints in the bile duct to keep it open and then 3 months later removed them. Do you know how elevated his liver enzymes were? Has he been on meds for his attacks at all? What is the dr thinking it is? I can tell you that the liver biobsy they did on me was pretty barbaric. I had no sedation at all..just a little numbing of my skin where the needle went in. I would encourage you to have the dr sedate him if he needs to have this done. I will never go through that again without being sedated first. The ERCP’s are not bad at all. You don’t remember anything. Good luck to you .
Well the darn pain is back thought it was gone for a while .i ate some sausage pasta with tomato sauce and woke up in pain.bad pain in the right back and under the last rib on the right.Choclate and spicy food really set this off i am learning. i can now actually feel the spasam in my side when it contracts.also a burning sensation and pain in my back close to the spine this is some weird stuff lol .But i have had this for years .
Lynn i had my gallbladder out 2 years ago last month , i am 44 now the gallbladder pain has never went away, i now think it has been sod all along
i asked my dr about sod but he didnt say much. he tells me i dont go to the bath room enough and put me on miralax and i have to say it has helped, my enzymes were elevated last blood test which was 2 weeks ago they should run around 55 mine was 68. but with sod they dont get too high unless it has affeceted the pancreas , google spintcher of oddi it will give you lots of info , i will say a prayer for your son, does he drink alot of soft drinks i did and the dr made me quit and that has also helped alot !!!
When I had my last blood work done my levels were really elevated..ALT was 198 and AST was 136. I know that they have never been this high unless I had the stints in..which I don’t now. My regular doc said it is probably from the ERCP I just had dne the previous week. I called my GI doc and his nurse told me my levels were normal in the hospital right after the ERCP. So..got me why they went up so high so fast. Nobody seems to excited about it though. They just say..”We’ll retest in 2 months”. So I am very frustrated right now. Like many of you I cannot get any answers. Susan good for you for asking for more tests. I hope that you find a good GI doc.
Karen, I called the dr for a referal April 6 is the soonest I can get in with a gi dr. In the mean time if I sit still not so bad, just an ache that won’t completely go away. Which is hard to do with 3 kids of my own, and 4 day care kids. Well wish me luck, and thanks for letting me vent. It really does help.
Susan,
I am glad that you got a referral from your doc to a specialist. I will be anxious to hear what they have to say. Boy..you have your hands full! Where are you located if you don’t mind me asking? It is always good to have a place to vent and people that understand what you are going through! Anytime!
Karen, I live in NH. Today I’m feeling better, keep thinking maybe it might be a pulled muscle, but then I think back to the pain I had in Nov and think probably not. I’m glad I’m feeling better, but I still want to know why I had so much pain to begin with. So at this point I’m still keeping my appt with the gi dr. I really just want to get to the bottom of this. I don’t want to have to go through all the prodcedures that have been described by everyone else and all problems that go along with it. Thank you for your concern. It helps tremendously.
Karen, finally got the dr to give me something for the pain. BIG big mistake, ended up in the er last night for several hours after having excruciating(sp) pain. I am scheduled for an u/s today. All my blood work came back fine last night, so it makes so sense to me why so much pain. I don’t mean to be such a whiner or anything, but I’ve had enough. I did read that taking pain meds can leave you in extreme pain. I took only 1 tylenol 3 and boy did I pay for it. Any other suggestions for what else I should talk to my doctor about today would be so much appreciated from anyone. I just want them to believe that it’s not gastritis. Thanks again
Hi Susan, I’m so sorry that you had to go through that last night. You might want to talk to your doc about something other than “Pain meds” to try. My dr has tried like a smooth muscle relaxer..I couldn’t take them but he said they have helped other people. You might want to ask him if you could try like tramadol. It is a non-narcotic pain med that helps me. Please keep in mind that I am not a dr..just telling you what has worked for me. Hopefully you will get answers. Gabapentin also has helped me. It is for nerve pain. Good luck today!
Thanks Karen. I’ll talk t the dr about it today. Good advice.
Karen, I hope all is going well for you. Today seems to be a good day for me so far. I’ll keep up the good thoughts for you and everyone who is going through this. Take care
Hi Susan,
I had a pretty rough night last night but am doing better today. Thanks for the well wishes. How did your talk with the dr go on Friday? Robin and Shawn how are you guys doing? I hope everyone else is doing well..would love to hear from everyone!
Karen i am doing fine , the pain is gone for now , i just ate a big gresy hamburger i am sure i will pay for it . I tell ya i think the miralax and my stopping the cokes all day every day has helped, maybe my doc was right this time . hope you all are doing fine.
Thanks for asking, Karen, Today I was pretty good. I have taken one Tramadol thisafternoon around 12 and then another at 7pm. I also take levsin for spasmsbefore I eat. Sometimes when I guess the sphintcer moves, it almost feels like it shakes my body. I think the levsin helps with that. I go back to the pain management Dr. on Tuesday. She told me if I am doing good with these meds she will release me and I will have to call in for refills on my pills. I guess this is a way of saying I’ve done all I can. I guess I’m better than I was last year at this time. I guess I will E-mail my Dr. at John Hopkins and tell him whats been happening and about the pain management, I haven’t talked to him since I’ve been going. If I listened to him I would still be in a lot of pain, he gave me Librax, this did not help at all.
Oh yea and Shawn, Since I’ve had SOD I can’t drink any kind of soft drinks. I use to drink diet cokes and I liked beer with pizza, but I can’t drink anything with carbornation.
Hi Karen, sorry to hear you had a bad night. When I talked to the dr, on friday, she seemed pretty stumped as to what was going on. I had the u/s done on friday morning. I haven’t heard anything back, I’m sure I won’t till Mon or Tues. Some how I don’t think it will show any thing at all. Not so great on Saturday, just a feeling of tiredness and no energy, then I ate a simple dinner and wham it hit me again. Not so much to send me to the er but close. Mostly I didn’t go was because I knew they couldn’t help me. Still I’m going to call her on Mon and have HER do some research on sod, see what she comes up with. I just want some answers. To everyone is it caffenie(sp) or just soda that seems to be a trigger? Take care and hope you feel better (or at least as much as you can) soon. Well wishes are still with you all.
I am scheduled for an ERCP on March 23, 2009. I have thought long about this decision, but still wonder if I should go through with it. I had my gallbladder removed in September 2005. I would have done anything to relive that pain, and was told it was diseased anyway. Things were fine until May 2007, when I had an attack while out of town. Actually, three days worth of painful attacks. I went to the ER upon my return home, and had elevated liver enzymes and the dilated bile duct. I then sought out a GI. He quickly diagnosed SOD, after MRI’s, endoscopy and the like, but I reluctant to go forward with the manometry. Three more “attacks” later (each lasting a few days), I was back in his office. This time, I had some new symptoms: very, very painful inflammation of the intestines, bloody stools, etc. After a colonoscopy, an endocscopy, sonogram, even biopsies, it was determined that I had a mild case of Crohn’s! I was shocked. As a 39 year old woman, a diagnosis of Crohn’s seemed out of place not to mention completely inconsistent with my history. I had never, ever had problems with my stomach or bowels – UNTIL the infamous I am scheduled for an ERCP on March 23, 2009. I have thought long about this decision, but still wonder if I should go through with it. I had my gallbladder removed in September 2005. I would have done anything to relive that pain, and was told it was diseased anyway. Things were fine until May 2007, when I had an attack while out of town. Actually, three days worth of painful attacks. I went to the ER upon my return home, and had elevated liver enzymes and the dilated bile duct. I then sought out a GI. He quickly diagnosed SOD, after MRI’s, endoscopy and the like, but I reluctant to go forward with the manometry. Three more “attacks” later (each lasting a few days), I was back in his office. This time, I had some new symptoms: very, very painful inflammation of the intestines, blood stools, etc. After a colonoscopy, an endocscopy, sonogram, even biopsies, it was determined that I had a mild case of Crohn’s! I was shocked. As a 39 year old woman, a diagnosis of Crohn’s was out of context, not to mention inconsistent with any of my medical history. I had never, ever had any problems with my stomach, bowels, or digestive system UNTIL the infamous cholecystectomy in 2005. I submitted to a Prometheus blood test, which did not come back positive for Crohn’s. I suggested a link between the gallbladder removal and these new “Crohn’s-like” symptoms, which my doctor quickly dismissed. This past week I had a mild case of these symptoms which didn’t result in a full-blown attack – but I am always waiting for it. two weeks ago, I stopped taking my Prevacid and Carafate, after I had an odd case of hives on my face, which are both potential side effects for these meds (and they should never be taken together – who knew?) – but it was odd because I had taken these for months without any reaction. The pain was unbearable, though I managed to get the other symptoms under control.
I am torn about wanting to feel “normal” again and subjecting myself to a possibility of pancreatitis.
Hi May,
If you are asking should you have the ERCP then I can only tell you that if I had it to do over again then I definitalely would. After my first ERCP with spincterotomy (cutting of the spincter muscle) I was pain free for about 2 years with no meds or anything! If your doc wants to do the manometery then I would have him do that . That would tell them for sure if the pressures are normal or not and whether or not to cut the muscle. I have had 4 ERCP’s and have never had pancreatitis. You have to answer that for yourself though and do what you think is right, I am just sharing my experiences with you.
oops sorry I meant hi Amy! My fingers aren’t working right!
Karen,
Thanks for your insight. My doc believes that I am Type I, even without a manometry, but definitely a Type II, based on the elevated liver enzymes, pain, and dilation of the common bile duct. It’s nice to hear from someone who has had the ERCP and sphincterotomy with a positive outcome. I suspect those who have had positive experiences may not feel as compelled to write, but I am hopeful that my procedure will be successful. The episodes are occurring more frequently now, and I still haven’t figured out what my triggers are, except that I need to eat small meals more often.
A friend of mine at work told me not to second guess myself too much, since the decision had already been made. Your email was helpful.
I think it’s hard for people to understand the pain, and as women, we can deal with a lot of it (no offense guys – I think we’re just programmed that way.) It’s getting more difficult though.
Still not entirely sure, but I am most likely going through with it. Keep your fingers crossed, and I promise to post the results – positive or negative.
Thanks to everyone who posts here and elsewhere – SOD has a voice!
Amy T, wishing you the best of luck and hoping you have a positive outcome. I wish I had a doc as understanding as you seem to. I’m still waiting to see the gi guy. What I have read here does help quite a bit. I know I can go in with information, especially what it isn’t. If that makes sense. Karen my thoughts are with you and hope you are having good “days”. I say it that way because I know even the good ones can be sometimes not so good.
Hello All,
I am 24 years old. Until January of this year (only about a month and half ago) I felt completely healthy and normal. I hadn’t even had a cold for a few years it seemed. To make a long story short, I started to feel unwell and made a round of visits to doctors for tests. I suspected I had an ulcer. After having a barium xray (or upper GI) they ruled that out as it came back normal. I was then scheduled for a HIDA scan. I really didn’t think my gallbladder was the problem as I have never experienced the pain that most people complain about. My results came back: dysfunctional gallbladder at 26%. I was relieved to know the problem (although mine doesn’t seem to be a “classic case.”)
I am scheduled to have my gallbladder removed on April 2nd laparoscopically. The surgeon assured me that this is a common procedure and most people lead normal lives without a gallbladder. He told me we didn’t have to do it now, but that my gallbladder wasn’t going to get better. So I scheduled the surgery.
After reading all of your comments about SOD I’m really concerned about this happening to me after I get my gallbladder out. It seems so many of you have had this happen to you after the gallbladder removal.
I wonder many things: what is the chance of getting SOD after gallbladder removal, will my chance be less as I’ve never had pain from my gallbladder, if I remove my gallbladder will I be doomed to a life of pain and hospital visits? I know this isn’t a gallbladder removal forum but I can’t ignore how many of you have had your gallbladders out and then started having these troubles which turned out to be SOD. Does anyone have any advice or experience to share? I’m very scared now.
Jessica,
The estimates that I have seen regarding complications after GB removal range from 2-20%, SOD is probably a subset of that. Most people that I know who have had their GB’s removed have no problems at all. Foods that cause problems, that wreak havoc on the bowels, but that’s all I have heard.
The most traumatic result of not removing a diseased GB is that it bursts, which rarely has a positive outcome.
Then again, I am not familiar with alternatives to GB removal, and didn’t research these prior to my cholecysectomy. I am sure they exist. I often wonder about what would happened if I didn’t elect the surgery – but I can’t dwell on it.
Good luck to you.
Amy,
If you are Type I or II then I would not hesitate to have the ERCP done with maybe spincterotomy because you have to get the liver enzymes back down. I always said that I could always manage the pain but if my enzymes started to go up again then I needed to have another spincterotomy. Does your doctor think that would make your emzymes return to normal? I have had the spnicter muscle cut 3 times..well after the first one I was in no pain at all for 2 years..then had it cut again. .then pain free for another 2 years..no problems. Back to work in two days. then the third time the dr cut it and put in 2 stents. That was very painful. I left them in for three months then another ERCP to remove the stents. I have not been pain free since. So I am not sure what the next step is. But if you can possibly be pain free for a spell then I would try it. It was totally worth it to me.
Susan..thanks for your kind thoughts and prayers. I do have good days & bad days but I thank the Lord that I am still able to work and golf with my husband and enjoy life. I work in a pharmacy so I see people alot worse off than me every day and realize that I am still very lucky even though I have this “disease” to live with. I still do get down and very frustrated at times. It seems like my dr doesn’t know what to do with me now so I ‘m not sure what the next step is. I found a website that is doing a study on patients with SOD if anyone is interested in participating I can give you the website..I would do it in a heartbeat but they said it is to find out if spincterotomy is really beneficial and since I have already had 4 of them I do not qualify. I was hoping to find more answers but I am beyond the realm that they are studying.
Jessica I can tell you that I know alot of people that have had their gallbladders out and not one of them have had any problems since. I think I read somewhere that only 4% of the population have SOD. Seems like alot more to me! That is pretty good odds though. you have to have your gallbladder out. I’m sorry there are no guarantees that you won’t get SOD but if you do it is not a death sentence. It is liveable..just look at all of us!! We will help you through it! I am just sorry you have to have these problems at such an early age. Mine didn’t start until I was 40. I will be thinking about all of you..
Karen,
Would you please give me the website of the study of SOD patients? I went to my pain management Dr. and still on the same meds, Tramadol, Nortripaline and Levsin. I have had only 1 ERCP and Sphincterotomy done 2 years ago at the University of Maryland Medical Center and I didn’thelp at all. I’m tired of Dr. telling me my pain must be coming from something else. It’s the same pain I had before the ERCP and Sphincterotomy and the Dr. said it was SOD, my pressures were very high. I don’t know if I would even want another ERCP and Sphincterotomy, I haven’t heard of anyone having success and no pain afterwards.
Hey Robin..Sure… The website is ClinicalTrials.gov and search for EPISOD. (Evaluating Predictors & Interventions in Sphincter of Oddi Dysfunction) I think you should find it then. It says they are doing the study in 6 different locations throughout the U.S. They include Alabama, Indiana, Maryland, Minnesota, South Carolina and Washington. I don’t know if you would qualify if you’ve had an ERCP with sphincterotomy or not but it wouldn’t hurt to call them. I guess I was real lucky to have no pain for two years each after my first 2 ERCP”S and sphincterotomy’s . I kept thing that it would go on and on like that but it didn’t. Robin do you know how your liver enzymes are? If they are elevated then maybe your dr would know it was your sphincter again? Have you had them tested lately?
I haven’t had my liver enzymes checked for a while. The Dr. who first thought it might be SOD was the Dr. who did the surgery (gall bladder), then my enzymes were elevated. Even since the Ercp my enzymes were only elevated a little. I am going to write or Email my Dr. at John Hopkins just to let him know that No, I did not get better and I’m seeing a pain management Dr. I haven’t been in touch with him in almost a year because I feel like I’m going around in circles. So far the pain Dr. is the only one who has helped. No other Dr. has gave me anything for pain except, Elavil that didn’t help after a while. Thanks for the web site, I will check it out.
It does say that the study is at Johns Hopkins in Baltimore..is that where you went Robin?
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