That dang sphincter of Oddi again
Posted on October 5, 2005
Filed Under Life
I’ve been quiet lately, as I haven’t been feeling great.
For years (11 to be exact) I’ve been having “attacks” of pain on the upper right hand side of my stomach. It happens a couple of times a year, starting with pain and pressure and fever. The fever goes away after a few hours, but then I’m in pain for days after I eat anything.
The first attack happened when we were on vacation in Las Vegas in 1994 and sent me to the emergency room. It mimics the symptoms of gallstones, so that’s what was assumed but ultrasound showed nothing so I was sent home with pain meds. Local doctor said it was reflux. Three years ago, my gallbladder was tested and found not to be functioning properly so it was removed. But I still had a few of these “episodes”.
A couple of years ago, I did some Googling and I suspected that the problem was sphincter of Oddi dysfunction.
Sphincter of Oddi dysfunction and papillary stenosis are conditions which occur when this sphincter (opening) mechanism is disturbed. When the hole is too tight, there is a backup of bile and pancreatic juices. This can cause pain (biliary colic). More prolonged obstruction may result in bile leaking back into the blood stream, resulting in abnormalities of the liver function tests, or even yellow jaundice (discoloration of the eyes and skin). Also, blockage to the pancreatic orifice can cause pancreatic pain or attacks of pancreatitis.
I mentioned this to the GI in Stamford and he blew it off. He said my problem was a pulled stomach muscle. The only reliable way to diagnose sphincter of Oddi dysfunction is with ERCP which is an invasive test. And it’s rare…certainly less than 4% of the general population have it from the reading I’ve done.
So fast forward to New Jersey. I’m due for a colonoscopy (joy) and I go through the prep (no joy). Somehow, drinking a gallon of Gatorade as the doc prescribed didn’t sit well with me and it brings on another attack. No fever this time, but pain on the upper right side and nausea. In the consultation with the doctor, I had mentioned my history of these “attacks” and he suggested doing an endoscopy at the same time as the colonoscopy as long as he was going to have me there to see what was going on. The colonoscopy was fine, but in the endoscopy he said he saw some bile in my stomach and he noted that my ampula papilla, the little hole that the sphincter of Oddi surrounds was “fibrotic” (small and hard).
3 days later and the pain doesn’t go away, so I went in for blood work which showed slightly elevated liver enzymes. Not not joy. Monday night I had a MRCP (a more advanced MRI that looks specifically at what’s going on with the liver, gallbladder & pancreas) and that was normal. So my wonderful doctor suggests sphincter of Oddi dysfunction as a likely cause of my problems. I think he was surprised that I knew exactly what he was talking about. Once I get this thing treated I’m tempted to send all the paperwork back to the doc in Stamford with a big “I TOLD YOU SO” stapled to it.
The way to diagnose and treat sphincter of Oddi dysfunction is through ERCP (Endoscopic Retrograde Cholangiopancreatography). It’s like endoscopy, in that a scope goes down the throat, but they introduce dye and watch how it moves through. Specifically when they’re looking for this condition, they test the pressure of the ampula papilla in something called sphincter of Oddi manometry. If it’s too high, they can cut the sphincter right there and it typically solves the problem. There are 3 types of SOD (explained here). Because I had abnormal liver functions tests, I’m either Type-I or Type-II which means that the sphincterotomy should do the trick.
The big risk in ERCP is that it can bring on an attack of pancreatitis. My doctor does ERCP, but he doesn’t have experience doing this manometry thing so he wants to refer me to someone who does (which will also give me a chance for a second opinion from someone who is familiar with this condition). Now I’m waiting for that referral. I’ll likely have the procedure done in Philadelphia or Manhattan.
This page thoroughly explains the problem and the treatment.
Comments
260 Responses to “That dang sphincter of Oddi again”
Not that it’s a good thing, but don’t you feel a litter better actually knowing what the problem is?
And the doc in Stamford. So what if it’s only 4%? That 4% comes from somewhere doesn’t it? I wonder if he didnt’ want to do the procedure because he didn’t know how or wouldn’t get the HMO to pay for the test?
Take care,
R
I do feel better knowing for sure what the problem is. I’m only a little frustrated that I’ve had 3 attacks since then that I didn’t need to have.
Just got a phone call from a doctor in Philadelphia that my doc referred me to. I have an appointment to meet with him on October 18th.
Meant “little” better not litter
If I could type I’d be dangerous…
You’re right, earlier diagnosis would have saved you from some attacks. Let’s hope you’ve had your last attack before your surgery.
Hi!
I suffer from Pancreatic-Type Sphincter of Oddi Dysfunction. I was diagnosed about 3 years ago. I’ve had many ercps, insertions of stents and a sphincterotomy but none work. Plus with each ercp I have a real bad attack of pancreatitis. Currently I am waiting to have some big op involving opening me up and cutting away muscles - don’t really understand too much about it at the moment. I have a brilliant Dr at The Royal London Hospital - Dr Colin Ainley - who says that hopefully it will help cut down the number of big attacks I get which I cannot contyrol at home but require hospitalisation. I hate this as it means leaving my children. This is the first time I have read about someone else who suffers from Sphincter of Oddi Dysfunction - even if its not the pancreatic type. Its no fun being a “rare” case, is it?! My GP had told me for years prior to the diagnosis that the pain was caused by an ulcer! Our lives in their hands??!!
Hope it all goes well for you - I will be awaiting news!
Best regards, P
Hi, Since having a great deal of pain and nausea, etc. my Dr. agreed to do an upper GI with a small bowl follow through. I picked up a copy of my X-rays but don’t have my report back. I have looked at them and compared them to a upper GI and SBFT from 1992 and there is something very differant. It appears that the barium that I swallowed backed up into all the bile ducts and is very visible. The common Bile duct is also very enlarged (balloned) right before it branches off also. Have you ever heard of this before as being caused by the Spincter of Oddi not funtioning properly? I’m doing some research before seeing the Dr. Thanks so much, Dee
Sorry, Dee…I’m not a doctor so I have no idea.
HI
I too have sphincter of oddi-which is how I found you.
I had the ERCP done with spincterotomy last April and now they feel they have to do it again.
Hang in there–it’s frustrating.
anyone that can help me! I have suffered with attacks for 8 yrs now. I have been diagnosed with sphincter of oddi dysfunction, acute pancreatitis and irritable bowel. I am unable to tolerate food without vomiting and pain. I have had feeding tubes, sphincterotomies, stents placed, as well as numerous ercp’s. Anyone that may know of a doctor or treatment please contact me @ charminime@yahoo.com. Much Thanks and God Bless.
Hello, my name is Shannon and sence april of this year I have been suffering with attacks….mine happen after gallbladder was removed. The first GI doctor that I went to said he thought I had SOD but told me he advise agaist a ERCP, and gave me a few pills and sent me on my way. I went back to my pcp and got him to give me vicodin for the pain….sence GI wouldnt give me nothing. Tuesday I have appointment set up with a new GI and hes gonna do a EDG, even though my surgon wanted me to have a ERCP. I hope I can talk this one into doing one, I cant take to many more attacks. Does everyone elses attacks feel like heart attacks combined with back labor pains??? The last attack I had lasted for six hours and I was so sore for days. I also got IBS from getting my gallbladder removed….oh what joy its been (not). I sometimes wonder after talking to other people if I have pancreatitis…..alot of my symptoms point to that also…..I have found a great website with wonderful people if anyone wants to join. Thanks for listening….Shannon
I’ve managed to postpone the ERCP. The latest GI put me on Amitriptyline which hasn’t made the problem go away, but it doesn’t hurt nearly as much. I can function and when the pain hits, I can usually just breathe through it for a few seconds and it goes away. Now they want to wait until I have another full blown attack before going ahead with any procedures. I’m fine with that. I’m too busy and the ERCP is risky.
hi i had my gallbladder removed 3 yrs ago and still have the same attacks.I had numerous visits to casualty being told its muscular or wind!! i could have punched the doctor who told me that . My last visit in August showed i had high liver enzymes so they kept me in i was in hospital for ten days after many tests nothing was found .The consultant has now refered me to The royal London to see Colin Ainlee as he thinks it may be S.O.D I am going to see him in December at last i feel i am getting somewhere as i was beggining to think i was going mad and must be imagining what i can only describe as labour pains in the upper right quadrant.
Hi, this is a long story. At about six monthes pregnant, I started haveing a sharp pain in my upper right hand quadrent. I also had constant naseau bouts of cramping and the runs to put it nicely. Lots of gas, lots of heartburn. I assumed it was all related to being pregnant. My doc said it was morning sickness and my round ligaments. After a stressful pregnancy and birth, I continued haveing pain in the same place, starting running a constant low grade fever, 99.8, and joint pain, stiffness, cramping, and pain in my shoulder blade, and back. I felt like crud all the time. I had chest pain, and heart palpitations also which sent me to the E.R. several times. At eleven months post partem, I saw a hormone specialist thinking this was hormonal. She said all these aches and pains were due to post partem depression. O.K. now I really feel nuts. I go see a gastro anyway who tells me I have a pulled muscle in my back and reflux. He gives me anti-inflams and prevacid. Helps, tremendously with the pain. Still running low grade fever. Then I do a ultrasound and hydascan for gall bladder. No stones but the ultrasound says I have a dilated common bile duct. Do hydascan, normal, 60% ejection fraction, no stones. Don’t like this gastro, go to another. She said have you had a CAT scan to check for hernias, etc.. no, I get one, normal. All blood work, normal. Pain continues, that was in April of 2005, I go on vacation, I am a teacher so I needed it. Get to the beach, pain and chest pain are out of control, cramping like crazy, heartburn, and right shoulder pain down arm. Actually, my whole right side is effected, maybe by inflamation? I have a endo which reveals a healing ulcer but nothing else. Then I end up in the ER again, another hyda scan this time an ejection fraction of 1.5% The surgen and the doc said they had never seen one so low. Anyhow, my gall bladder comes out. Still running fever, now for over a year. Really sick after my removal, I think to myself, I caught a stomach bug in the hospital. Pain continues, never goes away and worsens in the right shoulder area and in my right chest, throught the middle of me like I have been skewered throught the middle right under my ribs. Still running fever except now, it is creeping up to 100 or more in the afternoon. Feel like crap and tired all the time.
I say, ok, well I am nuts so I will go to an Osteopath and make the best of it. I see her as symptoms worsen, she redos bloodwork, all fine except for elevated inflamation marker. I go back to gastro I don’t like, one who gave me a cat scan stopped taking my insurance. He says the pain in back and shoulder in muscular again, and because of my family history, we should do colonoscopy and small bowel study. I say fine, at this point, I’m like I have cancer and I’m dying. Just find it. Nothing but some inflamation. Then I get a SOD hyda scan. That finally comes back abnormal and I have been referred to a specialist. I ate a piece of birthday cake with bakery icing…you know like wedding cake, in the ER that night and sick for four days, couldn’t eat anything. Look, I am overweight, I am 5′5″ and I was 218. I know this is a factor but when I can’t eat and I don’t have an appetite, I know there is something wrong. My question to you (anyone) if this is sphincter of odi, why is it progessivly getting worse and has anyone else run a continual fever???? Please excuse my spelling and I would love to hear from anyone who has any knowledge.
Hello from Canada,
I was diagnosed this summer with SOD after acute pain that took over an hour to go away. The third pain attack actually happened in my family doctor’s office and she called an ambulance for me to go to ER thinking it might be my heart. After a round of tests, it was clearly not my heart, nor was it gallbladder (removed) or gallstones (MRI and ultrasound).
I was admitted, gowned and on the table for ERCP when I was told more about the possible side effects - especially as it appeared I had spasm rather than scarred tissue or stones. I got down off the table and left rather than chance being on insulin for the rest of my life. . . .
For weeks, I can control the attacks by not eating any caffeine, alcohol or MOST IMPORTANT fat. When I have had fat, I have an attack. It subsides after 1.5-2.0 hours with percocet.
I have decided to try to prevent through diet and working with alternative health practitioners (spascupreel as a homeopathic has made a difference) rather than have a risky invasive procedure.
Nevertheless, I have a lot of fear when I travel that I will be in this excrutiating pain in a place I can’t take care of it (or me). Especially as it’s so difficult to get good food when travelling. . . .
Any more suggestions for pain relief?
Reba
I have a very long story like most of you here. It’s late, so I won’t go into all of it now. But, Ashley that posted on 11/21, have you gotten anymore info? Because my problems seem pretty close to your. If you want, you can e-mail me if you have anymore info. BradShellyHunter@aol.com. I will try to come back in a few days to post my history. I’m a nurse, but I have lost faith in Dr’s.
Thanks
Shelly
Thanks, Shelly. It’s amazing how many folks are suffering from this and how difficult it is to get relief. I wish I could offer anyone visiting here more than a platform to vent, but I’m struggling too. I went away last weekend and forgot to pack the amitriptylin. Stupid, stupid, stupid. By Sunday, I was not comfortable at all. Not a full blown attack, but painful enough that I was rather miserable. I got back on the medication and the pain lessened but it’s still there. Doesn’t matter what I eat, it hurts after I eat anything.
At this point, until I get a fever and start throwing up again, there’s absolutely nothing I can do but bear it and hope it goes away again. I dread going to a doctor and starting the routine again. I’m just acting as if it’s a pulled muscle where you feel it, but go about your business anyway.
Wow. Does anyone want to start a support group or a Yahoo group for this? It looks like we could all do with some pooling of information and support. I’ve had the pain on my right side on and off for two years. I just had an ERCP and got pancreatitis (easily the worst experience I’ve ever had in my life) and even after sphincterotomy, the pain on my right side has come back. For those out there on pain meds, I was told repeatedly that opiates make the sphincter of oddi spasm and make the problem worse. There’s also info on the web that repeats this, and I’ve found it to be true, it makes my pain worse in the long run. I do have a dialated bile duct, but my liver functions are normal. I’m eating a lowfat diet now and the pain is tolerable. But it’s still there. I’d post my e-mail address but I’d get spammed. If anyone is interested in a support group, maybe you could post here. Thanks. Beth
Beth, I was told the same thing about opiates, which is why I’m on amitriptyline. It’s not an opiate.
Part of the problem with SOD is that it’s difficult to diagnose without ERCP. ERCP is a tough procedure and many doctors will look for something else, anything else, rather than have to do it. As you found, sometimes the side effect is worse than the diagnosis or the treatment itself.
I’d be interested in a support group, but I don’t have time to organize one. Of course, you are all welcome to post here, keeping in mind that I am not a doctor and I certainly won’t be able to answer questions about SOD beyond my own experience and I take no responsibility for what anyone else says. I’ll approve any comment as long as it’s not spamming or flaming. I won’t check for accuracy.
Thanks all for coming forward…I did feel really alone in this until you guys starting popping up here.
Does anyone know any GOOD doctors in Missouri that do ERCP?
I am in a great support group, one of the people here that posted has already joined and broke down into tears the night of our chat. We have two live chats a week, and plus a place to post on a board. I have been there for around three or four months and the people are great. Reeann is the founder of this place and is a very sweet and wonderful lady, we chat daily now and also some of us even talk on the phone. If any of you are interested its on yahoo…the pancreatits place. If you join just mention the name shannon or women_2020 and tell Ree I sent you over…lol This place isnt just for pancreatitis but SOD also. We all have shed alot of tears,feelings,and hopes there. Its great support and you learn alot from all the people there. This place will become like your second family..its wonderful. Sorry I sound like I am trying to sale something but without this place I would have lost my head a few times……dealing with all the testing and not knowing for sure is very depressing. Hope some of you can join, thanks Shannon
Has anyone had any real relief from anything? Anyone tried other than western medicine? I will be seeing a doctor at Mayo on Monday but with everything I’m reading I’m really scared and worried. I have had bad attacks where morphine and first levels of narcotics hasn’t helped. I’m on muscle relaxents and vicodine but I have a small child to care for I can’t be in a constant state of dope to get me thru the day. I need help. I had my first gall bladder attack a bit over a year after my child was born , had that removed 2 years ago this week and now these attacks landed me in ER and hospital stay during Christmas. I’m 34 and have always been low- to average weight. I don’t work out and eat most everything but now I think I need to cut out some stuff. Oh during the attacks at Christmas just looking at the coffee pot made me sick. So I have stopped my 2-5 cup of coffee/day stuff. I need advice. Thank you all.
Marci, I’m still doing well on Elavil (Amitriptyline).
Morphine and narcotics won’t help this, and I’ve read that it actually makes the problem worse. I don’t have the source handy at the moment, but I know that I read that morphine and morphine-like drugs cause the sphincter to contract. Definitely not what you want.
Wow! I didn’t know that there were so many people that have SOD. I was just diagnosed with it and had never heard of it before and I’m an RN. I have had my gallbladder removed 13 years ago (laparoscopic) but have had episodes of similar attacks since. I have also had gastric bypass surgery (laparoscopic) 2.5 years ago. Since then I’ve been having almost constant pain in my right base of shoulder blade and back as well as right upper abdominal pain (it boars straight through) with attacks that are excruciating! I have been told I have SOD but an ERCP isn’t able to be done on me due to my altered anatomy from stomach surgery. I would need to be opened up to view or fix SOD. I don’t know anyone else with this dilemna and had never heard of SOD until now. Thank you for this site and posts for letting me know that I’m not alone as well as provide information and links for more information and support.
I’m male, 36 and had my gall bladder removed in April 05. Three months later I started having bouts of nausea. Well, in the last few months I am getting bad pain just under my right ribcage (same area as the gall bladder). It feels like a sword going right thru me. Nothing seems to offer relief-digestive enzymes, ginger tea, charcoal pills etc. I get pretty bloated when this happens and wondered if it was bad gas pain. But, now that I have read about SOD I have a feeling this is my problem. I had a bunch of tests earlier this year (bile flow tests, xray, ultrasound) and all they could determine was excessive bile pooling in my dudodium. I am going thru an attack right now (going on 11 hours no relief) and am getting frustrated. I cannot take any narcotocs. Is amitriptyline a narcotic?
Thanks
Todd
Todd, I don’t think so. There’s some information [here](http://www.drugs.com/amitriptyline.html). Remember, it’s not designed as a pain killer. It’s an antidepressant that also seems to work for chronic pain. [Mentioned here](http://familydoctor.org/122.xml). If you Google for [amitriptyline pain paincreatitis](http://www.google.com/search?sourceid=navclient-ff&ie=UTF-8&rls=GGGL,GGGL:2005-09,GGGL:en&q=amitriptyline+pain+pancreatitis) you’ll see that this has some precedent.
Is there anyone out there who has had Sphincter of Oddi disorder and found any relief from a procedure?
I can not believe it, I had my gall bladder removed nov 05 and nothing but trouble since, had an ercp last month and ended up in hospital with pancreatitis, still recovering now!!!! I still have right sided pain, esp after eating or walking long distances up the street etc, I also hace trouble digesting food at the moment and have lost 6 kilograms in the past 4 weeks. Any one else had this???? My specialist said I had a constricted sphincter of oddi, and cut a hole in my bile duct during the ercp, so I thought I was going crazy when the pain hadn’t gone! Reading all your stories I know I’m not the only one, so that’s good to know. I go back to my specialist in a couple of weeks and will certainly be asking a lot of questions about this phenomonen.
Cheers from down under…. Sharyn
I am also happy to have found this group. I am 42 and for the last 6ish years have all of these same symptoms. I have also had my gallbladder out due to low function with no relief. I am now nervously waiting for the results of a CT scan. My GI guy says that if the CT is OK, he thinks it is functional abdominal pain. I have read about the amitriptyline and will ask to try that. Now I get pain 90% of the time about 20 minutes after eating that gets worse with any type of exercise or activity. Thankfully my pain is not debilitating…just enough to drive me crazy. I get myself convinced that I have some terrible cancer…so it is reassuring to read your stories.
Carol
Hello again. I just went back to my GI doctor AGAIN! I’m an RN and sometimes doctors don’t like the opinions of nurses. The last time I went, I hinted around a little that I thought it might be the sphincter of oddi and he told me I was having cartilage pain. I was a little more blunt this time and asked him about the sphincter of oddi and ERCP. He said that’s the same as voodoo. He has done ERCP for this a couple times and it never works. So guess what, I get another pill!!
I am already on a ton of pills. I’m on flexeril and elavil for fibromyalgia. I’m on blood pressure meds. I’m on an antidepressant. I’m also on vicodin and darvocet for chronic hip pain. I injured my SI joint 3 years ago.
Anyway, the flexeril(cyclobenzaprine) 10 mg 3 times a day, and elavil(amitriptyline) 100 to 150 mg at bedtime, should help with the sphincter pain. If I wasn’t on them, I don’t know how bad I would hurt. I do know the vicodin and darvocet make the sphincter pain worse. Now he is putting me on hyoscyamine 0.375mg 2 times a day.
I don’t know what else to do. I do know I am tired of feeling sick and having pain all the time.
Does anyone know a doctor in Missouri that will do an ERCP with mannometry? Has anyone tried any other methods for relief? Feel free to e-mail me if you have any suggestions.
Anyway, thanks for letting me vent!
Shelly
Had my gall bladder removed 11/05. Pain continued. A couple weeks ago, started having this horrible pain in RUQ. Fell like I was having spasms in my diaphragm and my boobs really were hurting. Went to ER. Found out I had pancreatitis and hepatitis. Admitted to hospital. My surgeon came in and he decided that I needed to be transferred to a hospital that specialized in ERCP..thinking it was stones. My liver and pancreas enzymes were all back to normal prior to ERCP. I ended up having SOD type 1. So, they cut the sphincter. Then I ended up with major pancreatitis and elevated liver enzymes. My lipase was almost 4000. Worst pain of my life. Now I am back to work after a week stay in hosptial. Going back today for my follow-up labs and visit. Still have some pain. But have brown stools for the first time in 6 months. I have had oily floating orange poop for months before this.
Don’t understand why so many people and their doctors are so against ercp. yes it has it’s risks, but I think you run a bigger risk letting your pancreas, liver, and bile duct overflow with fluids that should be expelled into your small bowel. You also aren’t absorbing important fats and nutrients from your food since it isn’t being broken down properly. The ERCP runs it’s risks of side effects afterwards, but I would take a week stay in the hospital over constant abuse to my body anyday. Note: most sites recommend only getting the ERCP by an experienced surgeon or MD. Do your homework first. And you want to make sure your pancreas and liver enzyme levels are normal before you have it done. You just create more risks if you are doing this while inflamed.
I too have what is diagnosed at this point as Type 2 SOD, I was looking online to find out what may be helping others when I found this.
I have had the ERCP and sphincstotomy (In Nov. 05), during the procedure my doctor accidentally nicked my bowl, which had me in the hospital an extra week until I developed serious pancriatitis so the one day ERCP procedure evolved into 13 days in the hospital with near fatal complications which also included blood clots which developed in my arm and lung due to a nasty IV site. I am only telling my tale to let others know that the 7% complication risks are very real, and I am in far worse shape after the ERCP than before. I still have the attacks but now with the pancratic problems which I did not have before. I chose the ERCP (which was done by a specialist) because I was in so much discomfort,I could not see NOT trying the ERCP to improve my quality of life, and now after the ERCP bringing only a month releif I am again wondering how to live life somewhat normally in spite of all the trouble and discomfort of this. It does bring some consolation to know that others are also trying to work through this, but the medical community seems to be at a loss at this point in my case on anything else to do other than pain meds. They are willing to do another ERCP procedure that they feel will possibly help, but I have no peace about going through all that again.
I had my Gall Bladder out last September (05) and have been fine up until 21 March 06 when I had what can only be described as Gall Bladder pain again. I have had 3 bad attacks in 3 weeks, but seem to have calmed down now as i haven’t had a bad pain for 2 weeks. I have seen a consultant who seems to think I have SOD - also my liver levels are raised, and he has left me to think about whether or not to go ahead with the op -as it does come with risks…… Anyway I’m hoping for another bad attack and then if i have blood tests done within 24 hours of the bad attack the consultant can say for definate whether I have SOD or not - Think if I do have SOD i’m just going to go ahead with surgery - risks or no risks as I have a 2 year old little boy and husband to look after and I just feel rough all the time.
Would any of you advise me to have the ERCP done to determine what I have???
Hi Janet-
For the same reason you give for having the procedure I will give you the same reason not to. I went to Mayo clinic- you know the one that people come from around the world to be taken care of, anyway the GI told me it wasn’t for me due to age (34) He said if I were older it would be fine but all the bad risks are not worth it. Try modifing your diet. Really get down to whole, organic foods. Limit sugar, fats except for healty fat, and starches. Keep foods as natural as possible. It seems to have help me and many people with the same issues. Good Luck in your quest.
To make a long story short…my friend had her gallbladder out June 05. They had a drainage tube in for about 6 weeks after operation. Once they removed the tube, she “swelled” up about 42 hours later and has been “miserable” ever since. I e-mailed “Med Help” with her symptoms and all the tests she had so far, and they replied with possibly spinchter of oddity. But when she mentions this to the doctors they say “no” she would be having pain. She has no pain just “tightness” from her bellybutton up, plus she looks about 7 months pregnant. She gets some relief during the day, but gets feeling miserable as the day goes on. Any suggestions for her would be greatly appreciated. It seems like the doctors have given up!
Thanks! Tina
I find it amazing that for so many years, doctor after doctor told me the pain was in my head. I finally found a specialist in this field and he told me I have SOD type III and aquired pancreas divisum. I have had 8 ERCPs, several sphinterotomys, and I have has at least 5-6 stents in my duct. As you all can imagine, I too had pacreatitus. Once it was so bad that I had 2 cysts on my pancreas and almost died! The DR’s keep telling me I had a back ache and I finally got so bad I was vominting up foam and the finally admitted me. I can relate with all of you and your pain. It is truly the worst pain I have ever felt. I wish there was more being done to fix us with this disease. To all of you our there- please take care and try to enjoy life. If anyone needs a ear or shoulder, please email me- jsmith6901@charter.net. Jen
I have been reading everybody’s comments here and it seems the only difference with me is that my pain was in the left upper quadrant just under my ribs. I had my gall bladder out April, 1996 and within a year started having this pain. I’ve had every test there is, I think, to do with the digestive system. I even had an IVP
X-ray to check my kidneys. Nothing was ever found. I had a colonoscopy. Nothing. I am in my 50s so I was due for one of those anyway. I finally asked my GP if it could have anything to do with my pancreas. He did labwork and found one of the pancreatic enzymes elevated. He sent me to a Gastro. and I just had the ERCP on April 26, 06. He said the pressures inside my pancreas were very, very high so he cut the sphincter of Oddi. He also did the ultrasound where they put the instrument inside the pancreas. There were some slight changes that showed I had a chronic condition. On the labwork that was done before the ERCP, one of the tests came back that I have an autoimmune disease. He had ordered that test just to check because there is an autoimmune pancreatitis. He said he didn’t know which autoimmune disease I had. I guess I would need more tests. My Father died in 1982 at the age of 58 from an autoimmune disease. It wasn’t to do with his pancreas, though. My Father also had a brother and a niece who died of pancreatic cancer. You can see how all this worries me. Anyway, after the ERCP, I had about 4 or 5 good days where there was no pain or pressure. When I saw my Dr. again, I told him this and that I had a meal of spagetti that made everything worse. He said I shouldn’t eat things with a tomato base or anything fatty. I’m also a diabetic so now it seems like I am hardly eating anything anymore. I have lost about 25 pounds since Sept. I needed to, though. I weigh a little over 200. Anyway, maybe this will help someone else. Ask your Dr.s to check for an autoimmune disease. By the way, I didn’t get pancreatitis from the ERCP. I have a really good Dr. who specializes in doing them, among other things. Other Dr.s here send their patients to him for this test. I am in Jacksonville, Fl. and my Dr. is in a group called the Borland-Groover Group. If anyone is near here you might want to check with them.
Is there a diet for people who have
ODD and does it really help stop the
pain? Also what medications seem to work
best?
Thanks so much.
Ellen
Judi, I had my gall bladder out in April, 1996 and shortly after, started having pain in my upper left quadrant just under my ribcage. I see most everybody else has the pain on the right side. I think that’s why the pancreas or sphincter of Oddi weren’t looked at to start with. I’ve had every other test in the book including a colonoscopy, but nothing was ever found. I finally asked my GP if it could have anything to do with my pancreas. He ordered labwork and my pancreatic enzymes came back elevated. He sent me to a Gastroenterologist. I had the ERCP in April, 2006 and the Dr. said the pressures were very, very high. He cut the SOD and I didn’t get pancreatitis from it. He’s a very good Dr. I noticed a difference right away. I had no pain or pressure for the first 4 or 5 days after, but then it came back. I’ve noticed that it’s worse if I eat certain things. My Dr. says I shouldn’t eat tomato based things fatty foods. I’ve noticed that acid foods, like oranges, make it hurt, too. He had also done other labwork and found that I have a genetic marker for an auto-immune disease, like lupus. Apparently, there is an auto-immune pancreatitis and he was checking for that. He says he doesn’t know which one I have, though. My Father died of an auto-immune disease and there are other members of my family with different ones, so I guess it is hereditary in my family. Also, he had done a one of those sonograms where he can put the instrument inside the pancreas. It showed that I had some changes that showed I had a chronic condition. I’ve also had family members who died of pancreatic cancer. It’s sort of scary. Anyway, I would like to know if there is a special diet for this, also. Thank you.
I read this all with relief- I have been suffering severe epigastric pain for 24 years! I had a lap chole done- nope didn’t fix it, now having pain every 3-4 weeks which needs IM Pethidine to fix- they haven’t actually put a tag on it, but am heading towards an ERCP - sounds like lots of fun!
Thanks for sharing!
Is there anyone who has this problem with the SOD and has had the ERCP with the sphincter cut to relieve pressure who also has diabetes and is on Byetta for it? I seem to not be able to tolerate the Byetta as well since I had the sphincter cut. I don’t know if it is because my pancreas is working better since or what. It would be interesting to see if anyone else has the same things happening. Thanks.
A note on diet. I was tentatively diagnosed with SOD about a year ago, after a couple months of very intense, debilitating pain. (My gallbladder came out almost 10 years ago and I’ve had digestive difficulties since.) My doctor advised against ERCP because of the risks and put me on a low-fat, high fiber diet. I eat a bowl of All-Bran every morning, and I switched to fat-free milk and yoghurt (Horizon Organic yoghurt actually tastes good). I have the impression from some research I did that the fiber can actually absorb excess bile. Anyway, I have not had the excruciating pain since I started this diet, and I have the impression I am in better general health. When occasionally I do eat too much fat, I get a milder version of the pain (actually a cramping feeling) and that serves as a warning… in fact if I do eat something high in fat I try to have a small bowl of All-Bran with just a little fat-free milk and a big glass of water to drink right away, almost as an antidote, and I believe it helps. It’s possible I have something other than SOD but this diet might be worth a try for anyone who is suffering.
Dee, I was diagnosed 14 years ago with SOD. I found u by accident. I had a really bad attack last Nov., and another one today. My Dr. put me on Levasin sl. It doesn’t make the pain go away but does help with the spasims. I have to be very carefull what I eat. At the time of my dx. My GI Dr. told me they could cut the sphinter but in all likely hood It probably would not help. The Dr. wanted me to have my gallbladder removed but my insurance company would not pay for the surgery due to false neg. test. They said that they could not prove that my gallbladder was dysfunctional. My GI Dr. said that even removing the gallbladder probably would not have a pos. result. I also had a collegue who had SOD after gallbladder removal. They cut the sphinter and she developed peritenitis(infection of the stomach lining)which almost killed her. Thats why I have never had the procedure done. When I flair up it is usually around of reglan 5-10mg before meals,Levasin .0125 sl qid and good pain meds.
Kay, I had the ERCP done and about four or five days later the pain and pressure came back. After a couple of weeks, my Dr. put me on a pancreatic enzyme to see if it would help. The pain and pressure went away. I had also started a new cholesterol med. the same day, though. My GP put me on Zetia. He says it works in the intestines. About a week after I started these two, I developed diarrhea. It has lasted a week, so far. I stopped taking both these meds in case it was one of these. My Dr. took me back off the Zetia in case it was that. Imodium has stopped the diarrhea pretty much. I still don’t know if the pancreatic enzymes caused the diarrhea. I should find out tomorrow if the Gastro. wants me to go back on it or now. I was hoping it wasn’t that because it was helping me. Maybe you could ask your Dr. about it to see if he thinks it would help you. It’s called Lipram. There might be other ones, though. Hopefully, you wouldn’t have the same side effect.
Log on to “Diet Power Forums - Diet after
Gall Bladder surgery” - lots of helpful
information.
Ellen
OH I am sooooooo relieved to have found you all! I was beginning to feel like i was crazy!! I had my gallbladder removed about 8 years ago…and had an ercp a few months afterward for a lodged stone in the bile duct. My pancreas were injured during that ERCP ( supposedly i became combative due the anesthesia) and i was in the Hospital for 17 days!! THE WORST pain and experience of my life, until now….I am truly SUFFERING…severe pain in my right upper quad..nausea, fatigue, ( who can sleep with this type pain?)Worse, I have just opened my own restaurant business and can barely function..Been to the ER twice, to see a GI several times..he hs done a CT scan,ultrasound, an EGD, an MRI, etc etc,,and can find no physical abnormalities except for some inflamation around the pancreas that showed on the CT. We have tried all of the “stomach” meds..nexium, prevacid..etc…he just gave me reglan and I felt like i was dying after the first dose!it seemed to have Increased my pain. He doesnt believe in giving me any other pain med at all…and i am suffering. He thinks it is SOD, and He is sending me to a specialist who does the ERCP procedure, but evidently that is what got me here in the first place. The appointment isnt for weeks yet and i cant take another minute of this pain…I am in the midst of an attack right now and wish i could die!!! Im frightened of the ERCP because of the bad past experience… Can anyone recommend ANYTHING to relieve this pain, short of suicide??
i have had sphincter of oddi function disorder for ten years or more. i have had three sphinterotomys and numerous stent placements. i have had two monometrys. i am still suffering from this horrible disease. i had my gallbladder removed when i was 22years old and i only wieghed 95lbs. i have had numerous bouts of pancreatitis and am on chronic pain meds. i am still only 93 lbs. i have tried every treatment known to date and nothing has helped. many docs didnt believe me and called me a over sensative women. my liver started to become damaged from the build up of bile and i was very close to needing a transplant. now i have somewhat of a life as long as i live on pain meds, still about every two to three years i have to have another stent placed to stretch open my ducts. i am due again soon, i have been getting more frequent attacts again, i just turned forty.this is no way to live! go ahead and email me with questions, thanks.
I have a friend who had a similar story, except instead of sphincter of oddi dysfunction it was a brain tumor. He literally had a tumor growind in his head for years and he inisted to a few doctors that they give him a CAT scan but they never listened to him.
It wasn’t until this past Spring that his doctor finally gave him a CAT scan, the results of which sat on a shelf for a month. They didn’t even look at the CAT scans until I brought him into the emergency room one day for his migraine and they finally looked at the scan results and guess what? It showed a tumor over an inch wide sitting in the middle of his brain.
Hello All-
I have been looking for an SOD support for a long time, it’s really nice to find someone else out there like me! I feel different as well being that I am so young. I guess I am lucky that the Dr.s have caught it now rather than live for so many years like most of you have with pain, but I feel as though my youth has been robbed of me. I’m 26, a former college athlete who always watched what I ate and all my habits. For those of you who asked about diets-stay away from fats, alcohol, caffiene and spicy foods. When you are acute, stay away from complex carbohydrates, fresh fruits and vegetables and eating too much at once. When you are really sick, STOP EATING! Don’t even drink water. I too have had ERCPs, manometrys and many bouts of pancreatitius. I have been placed on every medication mentioned here and many more. I have had every test many times. Not eating doesn’t work for me anymore because I have to go so long without eating. It doesn’t matter what I eat I get sick, it’s just with foods I am not supposed to eat, I get sicker. I am very, very sick right now and very, very scared. I am supposed to get married in April. I am trying to get my doctorate. How am I supposed to live my life like this? I am tired of being the “test subject” that all the dr’s all marvel at. Everything that has been posted I have done. Many times. I have done relaxation, meditation, distraction, medication, castor oil patches, diet changes and prayer. I don’t know if I will make it this last round. I’m tired of going to the emergency room looking like I’m seeking drugs or I’m crazy because I haven’t met an ER doc yet that knows what SOD is. Sometimes I get so tired of having to explain myself all the time. I get so tired of looking at my undigested food in the toilet. I’m in Phoenix and there are only two docs in the state of AZ that treat SOD. I’m scared to go anywhere else though. Thanks for listening-if you have any help to give-I would gladly accept it.
Betsy. Wow, you seem to be having a lot of problems at such a young age. You said you had an ERCP but did the Dr. cut the spincter while he was there? My Dr. said my pancreas had a lot of pressure in it and cut the spincter to relieve the pressure. I never got to the point where I was vomiting, though. I just had pain for the last ten years. My pain was on my left side so they never thought to check my pancreas. I finally had to ask them to check it and that led to the ERCP and stuff. I did have the pain come back but it’s not as bad. It depends on what I eat. My Dr. put me on a pancreatic enzyme and that seems to help. You said you had taken meds, but have you tried that kind of med.? My Dr. had written a scrip. for Pancrease but it turned out that it is no longer in production. He put me on Lipram 4500 instead. You just take them whenever you eat and it aids digestion and it seems to help with the pain, too. Good luck. I hope you get better soon.
Thanks Deb-
I have had a sphincterotomy. I have been on alot of enzymes but for whatever reason, I actually felt worse on them. My pain used to be epigastric until I got pancreatitus for the first time and now all of my pain is always on my left side. I can’t sleep on my left side either. Thanks for your words of encouragement. I sure do hope that something changes! I will keep visiting back here very often-it’s the one place I have found where there are others that understand me!
HI,
MY NAME IS JOAN. I HAD TO FIND OUT I HAVE S.O.D. ON MY OWN, THROUGH THE INTERNET. I HAD MY GALLBLADDER OUT 8 YEARS AGO, HAVE HAD THIS PAIN FOR 1 YEAR NOW. IT ALL STARTED WHEN A DENTIST GAVE ME CLINDAMYCIN. ALL TESTS ARE NEGATIVE FROM MRCP TO UPPER ENDOSCOPY(WHICH I HAD AGAIN YESTERDAY). THE MEDS I TAKE SO FAR ARE DONNATEL(ANTI SPASAM) AND LORAZAPAM(ANTI-ANXIETY). I AM A TYPE III PATIENT, WITH PAIN ONLY, TESTS ARE NORMAL. I AM IN PAIN,24-7, UNLESS I AM ASLEEP. I USE THE HEATING PAD WHILE WATCHING T.V. AND IN BED TO GET TO SLEEP. I AM ALSO NAUSIATED MOST OF THE TIME. I EAT RICE CAKES TO COMBAT THAT. AM ON NO FAT, JUICING FRESH VEGATABLES DAILY, EVERYTHING HURTS. MY FAMILY THINKS I AM IMAGINING IT. I WILL TRY ACCUPUNCTURE AND LET YOU KNOW. THE DOCTOR IS GOING TO TRY ELAVIL NOW. THIS IS NO WAY TO LIVE. HE SAYS AND I READ ERCP PROBABLY WOULDN’T HELP ME BUT MIGHT WELL DO GREAT HARM. IS THERE A MEDICAL CENTER THAT SPECIALIZES IN THIS? 65 YEARS YOUNG THIS MONTH. THIS IS NO WAY TO LIVE OUT THE REST OF MY LIFE.
Hello Joan, I am so sorrythat you are living with this pain. I also have SOD type 3. I am on levbid and elavil, also on a few pain pills too. Theres a place for ERCPs in Indy thats suppose to be really good. The Dr name is lehman, you can pull up his name on the computer he has wrote alot of papers about SOD, ERCPs, and pancreatitis.You can email me anytime if you would like, or I am in a grop for pancreatitis and SOD. its in yahoo and called the pancreatitis place. I have learn alot of others there, but no matter what I am not getting a ERCP. It out weighs the benfits in are cause from everything I have read and also can cause death. hope to hear from you , have tons of links saved of my favorites about SOD from 2 years of research if you are interested.
Thanks for answering. Today is my birthday. Last week the doctor gave me BusPar 15mg 1 per day. Says it will take 3 to 5 weeks to work. Only
people who are experiencing this pain know how debilitating it is and how ‘out of it’ you get from the meds that only partially work. I will be happy to know of other links if you think they have valuable insormation and are not just comiserating. My family came and cooked me dinner yesterday so I began the day with 1/4 lorazapam and continued 1/4 every 4 hours. Made it through the day without Moaning, which my son said wouldn’t be allowed. I don’t even know I am moaning. I was major zonked when they were here but had minimul pain. They left at 9pm and at 9:30 BAM, I had to take one whole pill and go to sleep. I am not getting an ERCP either, prefer this to more pain or death. What helps you most?
I swim almost every day and while suspended in the water the pain does subside. The pain is less when I hear and feel a gurgle upper right quadrant under ribcage while eating, however when there is no gurgle, pain is intollerable.Anxious to hear more. I will look up Levbid. Again, thanks for answering so promptly. Knowing I am not alone helps. I don’t know your email address.
Hello Joan my email is women_2020yahoo.com, feel free to write anytime. Here are a few links I have saved about SOD.
http://consensus.nih.gov/2002/2002ERCPsos020PDF.pdf
http://www.drismail.com/blog/?p=63
http://www.joplink.net/prev/200111/200111_04.pdf
I had my gallbladder removed in ‘96 using the “Keyhole” (Laproscopic) procedure and developed SOD this year. Apparently SOD is becoming more and more common among patients that had their GB removed using the keyhole procedure as opposed to the old-fashioned-cut-u-wide-open procedure. Something about the keyhole procedure not being as “clean” as the other.
Anyhow, I am scheduled for an ERCP tomorrow in Florida with the doctor that actually pioneered the procedure in the Southeast. His name is Dr. Orth and his reputation proceeds him. I have no idea how the procedure is going to go or if I will be better off but I can tell you that if you can get past his ego, this guy is a great Gastroenterologist. He truly believes in the ERCP and says that it can save lives and help ALOT of poeple. Yes, there are risks of pancreatitis but guess what? If you continue to produce gallstones and they continue to lodge in your bile duct, you are damaging your pancreas and risking pancreatitis/pancreatic cancer down the road anyhow. I’m 38 years young and tired of feeling this way so I’ll take my chances with the ERCP and pray for a good outcome.
Which brings me to my question about ERCP and SOD. Does anyone have any GOOD stories to tell or POSITIVE outcomes? People get on the internet in search of hope and when all they read is the bad stuff they lose hope and that can affect your health greatly.
I’ll let you all know how my ERCP goes. I’ll be in FL for a week after the surgery for observation purposes but pray that all will go well.
Also, in addition to a low-fat diet, I can tell you that eliminating salt has really helped me. It reduces fluid pressure on the organs and takes a load off as far as pain goes. And drinking HOT water as opposed to drinking cold or tepid helps because it makes the bile not as sludgy. Just my cents worth.
And lastly, I have an inherited blood disorder called Beta Thallesemia. SOD is more common in people with Beta-Thal. There is only one blood test for this, Hemoglobin Electrophoresis. Ask your doctor for it. For years I was told that I was anemic; turns out I have Beta-Thal and should never have been treated with iron supplements.
My name is Jane and I am 74 years of age. Had the old fashion gall bladder surgery some 45 years ago. Have had many, many so called gas attacks over the years which left my right side very sore for weeks. At this age, I continue to have pain on my right side just beneath the rib cage. This pain goes straight thru to the back and does not go away. Doctor has put me on Paxil but have only been on it for two weeks. Have not had any relief. Find I have to eat things like cottage cheese and canned peaches (no fresh fruit). After reading all your comments I feel relieved that I am not the only one experiencing this pain and it’s not “all in my head”!
Hello. I haven’t been on here in a while. I just read your comments, Alex. I live in Jacksonvile, Fl. My Dr.is Dr. Petersen with the Borland-Groover Group. He’s supposed to be the best guy in this area for doing ERCPs. It’s been almost a month since you commented. I was wondering how your ERCP went and if you had any problems. I sort of have a positive outcome. I had an ERCP back in April and I didn’t get pancreatitis with it. I was without pain for about a week. I guess you could say that’s positive. The pain did come back, but the Dr. put me on a pancreatic enzyme to help digestion and it helps a lot. I had pizza last night, though, and am paying for it now. He didn’t put me on any pain meds. I heard some can actually make it worse, so that’s ok with me. Let us know how you are doing. Dale
Shelly,
Did you ever find a Dr. in Missouri? I don’t know if you are still checking this site, but I have a specialist I’m working with if you want his name.
Nicole
I lived with SOD for 10 years, with many doctors telling me what was wrong…first it was food allergies, then it was horomones then stomach acid…I found at Dr. in St. Louis who told me I had SOD. At this point I am on a low-fat diet (30 grams of fat per day) it seemed to work for a few months, but now my stomach is starting to burn after eating and to tell the truth, I’m just tired of eating period!!! I only can have certain things and none of them even sound good anymore…I wouldn’t eat at all if I didn’t need food to survive. I anyone has any ideas please let me know.
Hello. I just wanted to tell everybody that my pain is pretty much gone now. I had commented earlier that I had a ERCP in April and the pain came back after a week. About a week or so ago, my Dr. decided to take me off Nortriptyline. I was taking it in a low dose for headaches. I’d take one each night so I wouldn’t have a headache when I woke up. I found out that it’s also for depression. He wanted to try something else since I was having some signs of anxiety. I noticed after I stopped the Nortriptyline that I wasn’s hurting in the pancreas very much. I ended up not being able to take the new drug because it made my blood pressure go too high. I asked them if I could stay off the Nort. also. They said yes. I’m much better. Maybe everybody should take a look at the meds. they have to take and see if they could be causing pain. I guess it was irritating my pancreas. I’ve heard that strong pain meds can do that but I didn’t know other things could also. Anyway, it’s worth a try. Dale
After an my liver tests came back elevated, I went thru an ERCP, colonoscopy, and a liver biopsy before I was sent to the Borland and DeGroover Group in Jacksonville FL. Where I was first told about SOD II. I needed the ERCP with Manomotry. The Mayo Clinic doctor who saw me told me that he wouldn’t let his wife go thru the procedure at the Mayo because of the risk if the doctors aren’t experienced enough and recommended the Medical University of South Carolina.
Since that point in time, thanks to the help of the Borland and DeGroover group, I have been thru 3 procedures in the last year. I first had the sphinterotomy (10/05) - about 5 months later(3/06), I had more pain and then had the duct to the pancreas cut and a stint put was placed. 3 months after that the all knowing pain started again and after waiting for my turn, (two weeks ago 9/06), I had my 3rd ERCP done and the docs at MUSC found that the scar tissue had grown so much that the duct to the pancreas was again blocked and placed two stints to try and force the duct to remain open. Dr. Lawrence at MUSC had explained to my husband and I after the first procedure that if your body over heals, the scar tissue can grow to the point that the pressure will increase again.
I have had very few complications following the procedures and the care I have received from the Borland Group and MUSC has been wonderful. It is my understanding from the internet that MUSC is one of 3 medical universities in the US that specializes in the study of manometry (I believe Wisconsin and Indiana are the other two).
My sympathies to all - this is painful, and very few docs know enough to help and from what I’ve learned, the equipment to preform the whole test is rather expensive. I know how it feels to have your pharmasist recognize you because your a trial run on another med for pain.
I am a frustrated mother of a 21 year old daughter who has just been diagnosed with sphincter of oddi disorder; maybe? Can you please read this and tell me what you think!
· As a baby Danielle cried constantly and was repeatedly diagnosed with colic.
· As a toddler she continued to have bouts of severe ‘colic’, which were episodic and associated with screaming and ‘doubling up’ in pain. I took her to numerous specialists.
· At 4 she was hospitalised with severe abdominal cramping, vomiting, diarrhoea and a high fever. She was put in isolation because no diagnosis was found. (Later we discovered this to be Cholecystitis)
· At 4 yrs 6mths she was ‘accidentally’ diagnosed with gallstones. An operation was performed to remove her gallbladder, which was completely filled with stones. It was never discovered why she developed this condition. She was not given any follow up treatment.
· She was not able to tolerate fatty food as this made her nauseous.
· A few months before Danielle’s 17th birthday (2002) she had episodic bouts of severe chest pain in the urq radiating through to the back. I took her to the hospital but the cause of her pain was not found. After this, I took her to another specialist who suspected that she had a ‘grain’ lodged in her bile duct. She was given an ERCP and discharged despite continuing to vomit in recovery. I took her to another hospital because she was in severe pain and still vomiting. She was not seen for 15 hours; by that time she was dehydrated and had pancreatitis. She stayed in hospital for another week. No follow up was recommended.
· Danielle never seemed completely well after this. She was often tired, often nauseated, had trouble with her vision and was ‘a bad colour’.
· Just prior to her 20th Birthday (July 2005) Danielle was diagnosed with Type 1 diabetes. She was admitted to hospital with high sugar levels and was stabilised and ‘educated’ for several days.
· Coincidentally, prior to and following this diagnosis she had recurrent bouts of severe chest pain again. She was admitted to hospital again only a few days after being discharged with diabetes. She was given an ECG and blood tests but the cause of her pain was unknown. One week later she was taken by ambulance to hospital again with the same pain. She was given morphine to relieve the pain but this made her vomit for many hours afterward. She was also given an ECG, blood tests and an ultra sound but no cause was found although she had elevated LFTs.
· She continues to have this pain and has had another serious occurrence (July 2006).
· Today (October 2006), yet another doctor saw Danielle and diagnosed her with sphincter of oddi dysfunction .He prescribed Buscopan to relax the smooth muscle when she has an attack. He said she had a ‘text book case,’ so why hasn’t anyone suggested this before? (It still doesn’t explain why she feels nauseated everyday?) She can’t have another ERCP because the last one contributed to her having Diabetes Type 1.
Hi everyone,
Just wanted to say that after having my gallbladder removed laparoscopically in 1992 (I was one of the first in AZ), I continued to have stabbing heart-attack type pain in the center epigastric area, along with vomiting, nausea and weight loss. I had been hospitalized every other year since 1997 with a “mystery stomach problem”. Finally, in 2004, I was diagnosed with SOD Type II. They scheduled me for a Sphincter of Oddi Manometry in Tucson, which is 125 miles away, but it was cancelled six days prior to the procedure due to my insurance changing.
I was in the emergency room again on 9/30/06 with another terrible attack. This one slowed down after i.v. painkillers at the hospital, but I ended up vomiting 14 times that night, with bile coming up toward the end of the night. They gave me prescriptions for Demerol 100mg for pain and Nifedipine (calcium channel blocker) to relax the smooth muscle spasms. I continue to have attacks almost every day and the medicines hardly touch the pain. I have lost 6 pounds in 7 days.
I am now trying to get approval for Dr. Das at the Mayo Clinic Hospital in Scottsdale to do the SO Manometry and possible sphincterectomy. I understand that Dr. Das is the only gastroenterologist in the state of Arizona that will do this procedure currently. Also, since the Mayo Clinic doesn’t accept my insurance, I will be confronted with a huge bill. I was told $3500 for the manometry and up to $8000 additional for the cutting of the sphincter (what a joke!). I am trying to get precertification, though, since they consider it medically necessary and he is the only doctor who can do it. In that case, it would be mostly covered.
Has anyone heard of Dr. Das? Am I crazy to want to have the sphincter cut? The pains I have are similar to the intensity of labor pains, and I don’t take pain very well.
Thanks for your time!
-Michelle
i am a 31 y old f with similar diagnosis to all of u at 17 i had my gall bladder removed i also had stones removed from my bile duct since then i have been sick i always get the attacks similar to the gall bladder attacks i had ercp’s , endoscopys, colonoscopy’s and every other test you can think of i too have had pancreatitis and elevated liver enzymes i also have 2 cysts on my pancreas. i have spent most of my life in and out of the er and i had some nice month long hospital stays with iv feed and pic lines i was just told that i have sphinter of oddi dysfuntion and it made me very upset i have been suffering too long now the doctor i have been seeing has told me he will refer me to yale of new haven. i also have irs i feel like what next where does this end will i ever have comfort and do these doctors know what there doing or are they making me worse?
Hello everyone, sorry to see more and more people coming here with SOD. I have been in a group for a year and a half for support and info for SOD and pancreatitis, they go hand and hand alot. The group is in yahoo and is names thepancreatitisplace.com Theres alot of caring people there and all are willing to help. We share info and also names of doctors and centers that perform ERCPs. Feel free to email me anytime for help on this or information, women_2020@yahoo.com. I dont think alot of the doctors understand what kind of pain this is, its ruined my life. Levbid has helped me from having so many attacks, but I also take bentyl,nexum,percocets,vicodin,evavil,and zololf. take care Shannon
Hi Everyone.
Michelle I am also in Arizona and was sent to U of A for manometry. The Mayo clinic in Scottsdale didn’t accept me because I wasn’t poor or rich enough. I have heard good things about them, they just won’t take me. My doctor here in Phoenix is recommending one more trip to Tucson and then we may try the Cleveland Clinic. I haven’t heard very much about anything else in AZ. Feel free to email me anytime. bbasch@phx.stu.argosyu.edu
Betsy B
Im back i had sphinctectomy done last thursday on saturday ended up in hospital with mild pancreatitis im home now feeling tired and on painkillers i hope this goes away
This is a wonderful blog. My mother was one of the first to have a sphinctectomy years ago. I had my gallbladder out in 1993 and started having attachs in the beginning of 2006, I shared my family history and requested a ERCP because I had had several attacks by this time. It was almost like they laughed at me and told me the problems with SOD are not inherited. Well here I am 10 months later and many, many attacks later and they final decided to do an ERCP. My duct has dialated from 12 mm to 18 mm and some of my liver enzymes are elevated. My attacks start with perfuse sweating, then pain in the upper right quadrant which then referrs to my back. Does anyone else have the sweating. If so did the sphinctectomy help?
Hello,
I noticed that there was a link to my site, DrIsmail.com on here..
I wanted to let you and everyone else know that because of the glaring lack of a support group on the net, I’ve set one up.
If you could post about it to your readers, it would be greatly appreciated.
http://SOD.DrIsmail.com
Thank God I found this site. I”m so tired of Dr. telling me to go to a psychiiatrist!!!
I take Lexapro for an anxiety problem. I’ve been taking it for years and it has been very effective in treating my anxiety. I also WAS taking metformin for diabetes. I’ve lost so much weight b/c of these ATTACKS my glucose levels have begun to drop to really really low levels, also sending me into Panic attacks.(this is according to the psychiatrist who treats me for anxiety).
anyway to make a long story a little shorter, 3 Gastro Dr. have suggested I go back to the psychiatrist!! Finally, the Psy Dr. said to send the Gastro guys to him.
My last Gastro visit, last Wed, was at Chase Fox, where the Dr assured me it was SOD not cancer. I knew it wasn’t cancer after suffering for two years, I assumed I would have died if it were pancreatic cancer.
My point really is I appreciate reading about these attacks, treatments, and outcomes of such, since most Dr. here in NE PA haven’t a clue.
I’ve had every none invasive test, a colonoscopy, a stomach scope, twice, but no one wants to do an ERCP. I’ve had MRCP.
After reading everyones post I don’t think I would have an ERCP. The last DR. ssaid it is something you need to learn to live with, and I guess it’s true.
Thanks for all your sharing and advice, I will continue to check here for updates.
Yes I have the sweating, I was just asking on another site to others if anyone has it. I have joined the Doctors support group posted here. Would love to hear from others to hear there stories. I have seen the the site is being looked at by alot of other people but no one is really posting. I did some today, so maybe others will follow. Hope to see you and others in there.
Shannon/MI
Hello shannon and cathyand everyone else,
I too begin with the sweating and what feels like a hot flash. I’m 57 and had a total hysterectomy 12 yrs ago, so I don’t think it’s that.
I’ve read on this forum and others of people having crushing chest pain. I recently had a thallium(sp) stress test and my heart is fine. I do suffer from acid reflux, so that could be the answer.
After the DR at Fox Chase told me I had Type III SOD, I keep looking for answers.
I’m going to ask my Psy about elavil. It’s worth a try. My sister has fibromyalgia and is taking wellbutrin and it helps a great deal with the pain. Some medicines seem to have dual purposes, maybe they found that by accident.
Does anyone else have problems with glucose levels dropping and skyrocketing during an “attack”?
The GI at Fox Chase said to discuss it with the Endo guy, he said he thinks it’s part of the SOD.
Maybe I’ll ask the mailman LOL he might have the answer.
Anyway please keep posting and maybe together we will find relief.
Thanks, Phyllis
It is so nice, no, a relief to find people that have the same problem. I went to my GI doctor on Tuesday to discuss what I thought was a gall bladder issue and he brings up SOD.
My problems have been going off and on for 17 almost 18 years.(Orginally diagnosed with IBS, but I have no bowel dysfunction, only abdonminal pain. I think IBS was the catch-all diagnosis when they could not find any other cause.) My problem has been mild, compared to the stories I have read here.
I tried to explain to my dr. that it is is very frustrating to go to the dr. and not have them believe anything is wrong, when all you have is sporadic pain. Test results always come out clean. I was always told that pain is your body telling you something is wrong.
I went to the ER after a three day episode and was treated for a strained back (Muscle relaxers and pain meds.) Slept for a week, but I did get better.
Since my pain does not stop me from living a normal life, he wants to wait before doing anything. He has talked about an ERCP, now I am glad he isn’t rushing me into it.
Does anyone else feel rushed by their doctors? I had written two pages of questions and I am not sure that we got to all of them. Maybe I will just fax them to his office a couple days before so he knows what I want to talk about. My husband says I am the kind of patient that doctors fear because I do reseach and ask tough questions. I became this type of patient after a talk with my PC. He said I needed to become an expert on any problem I had to protect myself. I like the team approach to health care management. I am not sure if the doctors like it.
Yesterday, I felt like a pretzel from the cramping. On days like that, my family suffers because I am not the most tolerant person.
Hi Betsy,
Thanks for your post. How did your manometry go at U of A? I went to UCLA on 12/7 to have a SOD Consultation with Dr. James Farrell. He told me that since my liver enzymes were very high right after an attack (10 times the highest normal level) that I would be a candidate for a sphincterotomy. He told me that I am in the highest risk group for pancreatitis, but that with stents this hopefully will not happen. I am scheduled for an Endoscopic Ultrasound, an ERCP and Sphincterotomy on 1/29/07.
I have had many attacks over the last 11 years, so hopefully this will work. It is frustrating when no one in your own state can help you! Dr. Farrell is very nice, though, and is well written and experienced in the topic of SOD.
-Michelle
Hi all,
I have many of the same issues as most of you. It all started after my third pregnancy. I was having pain that radiated to my back. I had my gallbladder removed. I still was having attacks on occasion. I always had pain, but it was tolerable. I ended up in the er with a severe attack. The pain would not ease up. They found my liver enzyme levels had skyrocketed. I had an ercp. They found I had Sod and Pancreas Divisum. I did not develop Pancreatitis with the ercp. It has been almost 2 years since the ercp and I am developing the same syptoms. Very frustrating. My Gi is checking my liver enzyme levels to figure out if we need another ercp. Hopefully not.
Does anyone else have the Pancreas Divisum?
Just wanted to let everyone here know of the new group. Its for SOD and is now up to 36 members and growing daily. Like here its nice to here others stories. We are trying to learn from eachother, and hopfully help one another too. If anyone is inerested I will leave the link below, hope to see someone you there.
Shannon
http://SOD.DrIsmail.com
Great resource, Shannon! I just registered, too.
Hi everyone
I have just today been diagnosed with SOD….3 years after having my gall bladder removed.
I never even knew such a thing exsisted……so i sat down to google it………and here u all were.
I have imagined myself to have all sorts of things over the past weeks……..who would of thought it could cause this much pain!!!
Reading all your comments was a relief for me…..knowing that there are people out there that understand the pain it causes.
I am interested to know if anyone has a diet plan that works for them…….too scared to eat much at all at the moment…..lol.
Hope to chat again soon……
Julie…..from Oz
HAS ANYONE CONSIDERED LITIGATION?
Just wanted to let everyone know I finally started a support group on yahoo for sphincter of oddi, and pancreatitis. ALot of people I have met so far along the way seem to have both so I joined them together. I hope to see some of you there, and make it a great place to share information. I plan on setting up a place for us to share drs, where we are from , meds we take,and alot of other stuff, including links and pics of ourselves if you would like to share.
Heres the link if anyone is interested http://health.groups.yahoo.com/group/Pancreatitis_sphincterofoddi/
Also feel free to email me with any other questions at women_2020@yahoo.com
It is so nice to finally hear of people who have experienced similiar problems! I was recently diagnosed with SOD after having several attacks during and after my pregnancy. Before I was pregnant, they were spread out and we jsut assumed that I had a bad stomach virus or something. I just recently had an attack after having my gall bladder removed. We had hoped that would fix things:( Anyway, I am nervouse because we are going to start trying again to have a baby. Is there any informatio out there that connects more frequent attacks with pregnancy? Theyhad me on some pretty intense pain meds, a dilaudid drip, for 10 days during my first pegnancy which can’t be good for the feuts or mother! But what’s the alternative? The pain is far worse than any contraction! Any help and info would be much appreciated.
Thank god.
I am a 21 year old student. Since 16 I have had this problem flaring up every three months. Was told it was stress, ulcer, IBS…you name it. Got diagnosed last year by Dr Colin Ainley, a fantastic surgeon who says it is bilary type SOD. Sadly I got pancreatitis both going for my ERCP and sphincterotomy. Thought my problem was fixed but just this week I took a sudden attack which has prevented me sitting my exams to my full ability. I don’t know what comes next…will they try the sphincterotomy again?
I am sick and tired of this pain, hopefully it will be fixed soon…
I have 2 conditions and I am wondering if they are linked or if anyone else has them as well. I have SOD and also have primary biliary cirrhosis. It has been a long, paninful journey and am beginning to loose hope. Any help would be welcomed. Thanks
Just about headed home early today, cause the pain that I’m having is unbearable. I’m seeing a Dr and have had all of the Oddi tests run, but no weird levels, gallbladdr out 3 years ago. Just severe pain and I’m nervous to have the surgery. Feel really stuck and sad. Glad to see I’m not the only one.
Hi Just to let you know im feeling heaps better, Dr Colin Ainley is a great surgeon. I still have attacks if i take cocodamol, and i have had some mild attacks i will have to seee how it goes before i decide wether to have further surgery.Has any one else had sphincerectomy and felt well after did it come back and how long was you well for?
22 year old male here…Diagnosed with gallbladder dysfunction about 4 months ago low HIDA scan results. Had my gallbladder out lap 2 months ago. Still have pain in the RUQ. Pressure is incredible under chest and RUQ…I’ve had every test under the sun. Going to see a new doctor on Monday who specializes in ERCP and SOD disorder. I have hope that the Lord will heal me. I lost ~30lbs…
It’s hard to maintain hope however my strength is in the Lord. I suggest reading the Bible…
Psalm 18:2
The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the hornof my salvation, my stronghold.
Jer 29:11
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
I’m relying on His will in this situation.
Hey a glimmer of hope here. I was diagnosed with SOD about 4 months after having my gallbladder out. I have a great GP doctor who immediately referred me to a specialist who does the ERCPs. I had the ERCP done and he cut the sphincter, put a temporary stint in place. And I have not had any pain since. It has been amazing! I did use Bentyl (anti-spasm med) before the surgery and it helped slightly to reduce the intensity of the attacks. But haven’t need to take it since!!
Tina, describe the pain you experienced prior to the ERCP.
Thanks!
I am a 29 year old mother of 1. I was 22 when I first began having severe upper abdominal pains that shot right through to my back. I would literally beat on my back with my fist tight. I just wanted someone to take a bat to me. What sent me to the hospital was an attack that came on suddenly. I was at work showing apartments when BAM… it hit me. I was sweating, nausiated and just needed to lay down. After sticking my head in the office freezer for cool air and undressing completely down to nothing in my bosses bathroom (locked of course)and just lyed on the floor helpless. The pain was still there. I got dressed again and went to lay on a couch in the employee room. That’s when my assistant manager found me looking very ill and called an abulance.
Ofcourse the pain went away as quick as it came. I was fine. The did blood work and it came back normal. For two years I dealt with the pain. Finally I went to see a GI. He ofcourse did all the test that singled my gall bladder out. Ingulfed in stones, it was removed. He left some stones still in my bile duct so I had to go once again to have those removed. After the surgery, I continued to have pains. I brought it to his attention and he said that I would probably always have pains, but it is nothing to worry with. He also said that I could still develop gall stones even without a gall bladder.
So for the past 5 or so years I have continued to have “attacks”. It interupts daily life and puts me down for hours at a time. I have been doing this for so long with no pain management. I have decided that this is just too much to bare and I have began seeing the same GI doctor once again. He ordered ultrasounds and blood work, nothing wrong. So that leaves me here. My mother saw this SOD on “Medical Mysteries” last night and brought it to my attention. I know I am in the right spot. I have read over so many of these comments and it is like reliving all the pain only without the actual pain.
I struggle with this EVERYDAY for several hours a day. I am so glad to have found some hope in all this chaos! I have an appointment this Friday to see my GI. I will bring all the info I have researched about SOD to his attention. I pray for some answers soon.
I have quietly read lots of forums, but have never written before. I have had all the tests, exams and procedures as all of you over the past 15 years until I finally was referred to a Pancreatic specialist. He did the biliary sphincterectomy which is the conservative first step. I had some adjustments in the way I ate and reacted after the surgery, but had a few months of “no Pain!” I have recently discovered that the pain meds they give you, Percocet being the primary one, actually now cause a flare up and the pain comes back. He wants to do another sphincterectomy this time in the pancreas, but I have been putting it off since most of the drugs are opiates which tend to create or amplify the problem. Anyone else with this problem or some means of relief?
Jason - the pain I had before the ERCP was in the upper right quadrant, behind my ribs and radiated to my back. I usually started with a sudden dull ache that quickly became full blown, along with a sweaty feverish feel. The pain was very similar to the tight intense pain of labor - just obviously not in the same location (and didn’t end with the blessing of a beautiful baby!). I ended up in the emergency room twice and once my doctor took me in during an attack and did blood work right then. My blood showed my liver enzymes were high. That is what made him decided to recommend the ERCP. The dr that did the ERCP came with great recommendations and he did a wonderful job. I had NO problems after the surgery. He put a temporary stent in while I healed after the sphincterectomy (that is where they cut the sphincter). After a couple of months they took it out and it has been good since. Every once in a while, I will feel a funny sensation that reminds me of the start of the attacks before. But it never feels like anything more than discomfort. I can handle a little discomfort, just not the horrific pain!
Hi
So interested to read all your stories. I have been having attacks for three years. Gallbladder removed in May 07, currently awaiting nuclear med scan results. Should have them later today just in time for christmas!!!!!!!
Everyone should avoid any medications in the morphine family as SOD reacts to morphine as anyone would know if they have had the nuclear med scan. Hope everyone keeps well over christmas and manages to enjoy their time with families. Will post again when I have my results.
Hi,
Had an ERCP/sphincterotomy done in May 07 at Wake Forest University. Have not had a full blown attack since then, though I do have bouts of vomting bile 1st thing in the a.m. or after long periods of not eating. Seems like if I eat the “pressure” goes away. Hoping I will never have another attack. Can live with the vomiting. Have gone through this for the past 9 years. GB removed 2003 (many tests prior to and since were all negative). Have been told since GB rempval it was in my head, gas, reflux, ulcer. Some docs wanted to repeat the same damn tests. I took matters into my own hands and finally convinced my FNP to give me a referral to Wake Forest, which is when I got the SOD diagnosis. But, it was only because I went armed with info (all of the previous GI’s had no clue). Always thought it was curious that I CORRECTLY self-diagnosed, but well-educated GI’s could not figure it out. Anyway, still have days of feeling funky, but if I never have another attack again, I can live with it.
Hi
Just found out tonight from specialist I do have sod. Didn’t think i was going crazy. We are not rushing into surgery and he wants me to try a spray that is used on heart patients and patients with angina. Have had before and does help with muscle relaxing. Have to trial for 3 months and see if it helps. Doc says that with ERCP procedure there is a 1 in 3 chance of developing pancretitis, has anyone else had this problem after ERCP??
On a low carb high protein diet that a natropath (?) suggested and at the moment it is helping and the weight loss is a small bonus!!!
Hello everyone, read the stories. Mine is a bit different. I have pressure in upper adomen, I have run low grade temps. 99.8 to 100. ( got told that is not considered a fever ), My 2 pancreatic test come up elevated for the past year. (sorry for the name of em ) I have had liver tests done before n was never elevated til yesterday. Now gastro. specialist wants to implant a stent , n cut the sphincter muscle. I read one of the stories here… that doctors would want it tests to come be normal first b4 procedure. Mine slightly go down n get elevated again. Had mri’s. ercp’s ( just the scope, n a stent ) Been dealin with this for about 5 yrs. Was hospitalized from the pressure in upper adomen. ( thought it was heart. not heart ) I have had pain in upper right chest( where it seems like it was spreadin ), . I am confused n not quite sure how to go about this. I also believe i had ibs on top of it. From what i am readin the procedure dont work. But also thinkin that what kind of damage am idoin to my pancreas since my test wont go down. Sorry thinkin on paper but need some other input from ppl that have gone thru this.
I also have been recently diagnosed with SOD and after many months in the hospital i found a doctor in bc who refered me to a gi specialist who performed a sphinterotomy, and i must say it has helped make a world of difference, i am currently waiting for my follow up but there is a chance i may have to have that procedure repeated, i do recomend looking into it for anyone who is suffering from this unfortunate problem, and i can sympathise with anyone suffering from this as i have had it for the last 6 years 3-4 times a year
email me at kwright_420@hotmail.com if you have any questions about what i went through or comments or suggestions on prevention my doc has prescribed morphine but it interferes with my work and is not the best drug to have for this condition
thnks for reading
Kevin
Hello, I am trying to self dyagnosis myself, the doc said I may have acid reflux, but I notice the meds dont work. I have chest pains that move to my upper back and I notice an increased urge to urinate, usually 3-4 times within 30-45 minutes, with a clear colored urine. Did u have similar symptoms? thanks
Hi I am writing on behalf of my friend who was diagnoised with SOD about a year ago. She recently had a procedure which cauterised the spinchter to relieve the presesure. unfortunately this has not been a success. She has some annomolies in her condition in that she feels like her whole body is being posioned and her head is in a fog all the time she does have some pain in her liver. Her episodes last for weeks and at the moment she is not able to look after her children. Please help me to help her she feels she is at the end and has verbalise that she cannot go on living like this. Has anyone had stents that have worked? Is there another support group? Anybody suffering like her? Anyone recommend a consultant the is sympathic and effective? Please help[
Thanks Audrey
Audrey Weedon again forgot to say We are in the London area.
Thanks
I have been suffering from pancreatits for years. My most recent attack happened in Oct. 2007 and I have been on a low fat, no alcohol diet eating small meals frequently. My doctor thinks it is alcohol related by I think it’s SOD or stones in the duct. My last attack was 5 days ago. It put me in the hospital for 4 days on IV fluids and morphine for pain. They did a CT scan and it show only the head of the pancreas inflamed. The body looked normal size. My liver function tests have always been normal. So I don’t have stones in the biliary duct. I’m thinking maybe I do in the pancreatic duct right inside the pancreas or possibly SOD. I am waiting to be pain free for 2 weeks before they will do and Endoscopy ultrasound. I My doctor doesn’t want to do an ERCP because he doesn’t think it is SOD. Alcohol is one of the main causes of pancreatits and I think they are quick to assume that is why I have these attacks. I am a social drinker that occasionally binges. I have not had any alcohol since Oct and I just had an attack last Tues. so that is why I don’t think it’s alcohol related. Has anyone else had this that showed only the head of the pancreas inflamed? My amalayse level was 1000 and my lypase was 1800. The doctor said those #’s don’t always mean the higher it is the worse it is but this was my most painful attack yet and I have been following a low fat, no alcohol diet for months. Would like to hear from anyone who has had similar experiences. By the way I had my gallbladder out in 2005 after an attack then.
Does anyone have any names of GI doctors at the Mayo clinic in Rochester MN that they have been happy with?
IM 36 FEMALE IN PAIN IVE HAD MRI ULTRA SOUND DONE AND CT SCANS BUT THEY CANT IND OUT ANYTHING I SUFFER FROM PAINS IN THE BACK AND LIKE PULLING IN THE STOMACH AND GROWLING LIKE IM STRAING EVEN VERY TIRED. THEY TOLD ME MY LEVEL LIPASE IS HIGH BUT THERES NOTHING ELSE THEY CAN TELL ME IF YOU CAN HELP ME FURTHER THANKS SHERI
Hello, I have also been suffering from the same symptons, they told me I had and enlarged bile duct, I hope that I dont have SOD. If you do not have the SOD what can they do for an enlarged bile duct does anyone know, or know of any good doctors at Wake Forest Hospital thats where I have to go next week. Everytime I eat I hurt so bad, and my stomach gets so big sometimes It looks like I am 8 months pregant and the pain is unbearable. My back pain is out of this world not to say I have to buldging discs on top of the one I just had fused 2 years ago so I have to take something for pain. If anyone has some helpful info please feel free to email me at brendagilbert67@charter.net
I have been dignosed with SOD TypeIII. So frustrated. THere is a constant pain that doesn;t go away sometimes gets worse and sometimes eases up on the pain. I never know what is going to make it worse, sometimes I don’t think its even worth eating because everything will trigger an attack. The Dr. did an ECRP on me but no relief. Acuupuncture really didn’t help, I even tried self hypnosis, I don’t know where to go and I don’t know what else to do. I’m trying to decide if I should bo back to see my Dr. at Loma Linda or not he didn;t seem to really help me. I don’t know what my next step should be. Help would appreciated. Thanks
This is the first I have seen of this disease and I am excited at the prospect of actually having an answer to my “mysterious” disease. I have been to so many doctors, I have been so frustrated, and I have been to the ER every month to every other month since last May. They have taken out my gall bladder to no avail. Since I am young, female, and in relatively good health I have had doctors who wouldn’t even look me in the eye and who just wrote me off. I have lost almost 15 pounds because of the nausea and pills they have put me on make it hard to find a time I am actually able to eat. Thank you for the common stories, I feel like I might actually have a response to my doctor telling me it is “stomach spasms”.
I had my Gall Bladder removed 12/06 and I have had nagging upper right quadrant pain ever since. The pain seems to almost never go away. The pain subsides considerably as long as my food portions are small and my diet is extremely low fat. When I do eat normally it’s like a freaken muscle pull that stays with you all day and sometimes for multiple days. I have had colonoscopy, endoscopy, MRCP, MRI of Stomach with barium, chest scans - only thing left is the ERCP - I really don’t want to do it but who knows. I am 42 years and I am beginning to realize that this will most likely be a life long condition. Like Lulu, I feel frustrated - it is constant but never dehabilitating — just constant, nagging, feels like a muscle pull — I even feel the spinchter flutter during the evenings. I am up for any support groups to help folsk and myself learn how to live with this long term. My doctor did tell me to try elavil and ant-spasmodics - I guess I better give him a call. I would welcome any comments.
Well i went to the Dr. today Again! It looks like I’m off to another pain clinic. The last one put me on lyrica for nerve pain, it didn’t help at all except all the side effects were awful. The best thing they did do was give me a 10’s unit, it shoots small electrical rounds and it does help, better then any of the drugs I have tried. I’m done with the tests, drugs. I guess I’ll keep looking and trying other things. Hopefully something good will come up if so i’ll let everyone know. Good Luck to all
Hi All!
I am just so greatful to have found your site, and to find others that are living with the same health problems as me. I have lived with my symptoms since pregnant with my second child (1995, had sooo many,attacks severe epigastrium pain, D&V & fainting /Ambulance /Hospital
- Cholecystectomy 1996, Kidney Stone removed 1997,Sphincterotomy June 1998 ending with Pancreatitis!!, still all the attacks continued Specialist said I need a complete Sphincterotomy Nov 1998, still the attacks continue along with acid reflux now!. I wish that I had never had my sphincter sliced.I have always noticed that as an attack is ending I have the gurgling sound in left upper abdo and start to belch, and need to pass urine often over the next 15mins - 1hr. I made my choice that Drs weren’t going to keep guessing and chopping anymore and I didn’t want to take the drugs they offered, as I new I would have side-effects, dystonic reaction to 2 anti-meds looked for other answers -for last few years tried reflexology which really helped and now for last few years fibration healing/reiki/spritual healing has really helped me, I have learnt that when attack starting tender upper left side/back needs massaging as hard and lumpy - kids/husband massage until I start to belch staving off D&V. I also have a Bifid Ureteral System on left and Duplex System on right so now i wonder if I have reflux there at neally 43 yes I too Im tired living with never quite knowing when or where an attack will happen. I wish you all well in your search for good health
I have had lots of tests. I believe I have SOD III. I had both ducts cut am trying lyrica I also tried celiac plexus blocks twice didn’t help am pretty desperate pain all the time except nightime when I sleep All my blood work is normal had gallnlader removed 7 years ago didn’t help I don’t know what else to do I don’t feel nauseous just have pain Any suggestions I live in New jersey any great doctor to recommend went to head of endoscopuy at columbia presbyterian in new york he did the cuts on the ducts but did not help me at all any suggestions woyld be appreciated I am desperate
Had my gallbladder out 1/2007, a manometry in 3/2007 and a sphincterotomy with pigtail stent placement in 5/2007. Had temporary relief, but pain has come back and my pain is a nagging, burning pain on my LUQ radiating along my left rib cage. I also have periodic pain around my belly buton. Nausea is prevalent too. The doctor seems to think I need another sphincterotomy. He is a really great doctor, Simon Lo out of Cedars Sinai in Los Angeles. He seems to be the most experienced ERCP and sphincterotomy guy around on the west coast. Johns Hopkins is doing clinical trials using Botulism injections via ERCP, but it seems to be a short term fix. May be good to buy someone some time to make a more informed decision. Have heard of another procedure “sphincteroplasty” where they cut into the duodenum to access the sphincter, cut it, the biliary duct and pancreatic duct and suture it to stay open. One of the complications is from the sutures, though. They can cause irritation. Johns Hopkins has explanations of these procedures on their website under GI procedures. From my research, Borland-Groover in Florida, Johns Hopkins on the upper east coast and Cedars Sinai on the west coast seem to be some of the more progressive hospitals with the most experienced doctors regarding these procedures. Good luck and God bless you all.
Well I’m glad that I stumbled upon this webesite. Thought I was losing my mind! I’ve been experiencing bouts of upper abdominal pain for several years. I’ve been to see several gastro docs, all of whom thought it was either ulcers or reflux. Finally, after a few trips to the e.r. that were back to back and the er docs saying they thought it was my gallbladder, my current gastro doc sent my for an ultrasound. Of course my gallbladder ultrasound was normal, but I continued to have the painful attacks. Finally, my gastro doc suggested a HIDA scan which showed my gallbladder functioning less than 20%, so he ordered it’s removal.
Well, the gallbladder came out on Feb. 22, 2008, and low-and-behold I’ve still been having the same pain as before its removal. It was so bad yesterday morning that my husband actually called the ambulance to take me to the hospital. The “attack” lasted about 10hrs, but only subsided after multiple injections of heavy narcotic pain meds. The er doc ordered another ultrasound and a catscan with contrast. Both tests were normal. The only thing that came back abnormal was an elevated white blood cell count. The er doc suggested followin up with my gastro doc and recommended an ERCP. After reading all of the entries, I see that this is a more common problem than anyone realizes. But, I also am afraid of having this test done due to the possible risks. So, what are the choices? Live with the pain and take regular trips to the er. Or…have the test done accepting the risks?
Any thoughts, comments out there?
Thanks,
Jen
Jennifer,
Welcome to the wonderful world of gastric pain after GB surgery. My Gall Bladder came out 01/01/07. I am truly sorry that another human being must go through what you are now experiencing.
The good news, your condition may clear up, after all you had your surgery less than a month ago so give it some time. Having said that, be prepared to live with it - most of us have. Have your doctor perform an MRCP, colonoscopy and endoscopy to rule everything out before the ERCP. I haven’t done the ERCP yet but I realize I might in the future. I am also concerned about the risks. The doctor pulled polyps from my stomach and colon - I’m lucky I am fine but the URQ and LRQ pain motivated to get everything checked.
I don’t always follow these rules but eat small portions, lots of fiber and eat healthy - you should feel better. Also, have your doctor prescibe anti-spasmodics for your Oddis Sphincter - it will help a bit. Also, I am getting ready to try elavil to help with the pain. Good luck and stay in touch. rob
I am glad my doctor was intuitive and ran tests before taking out my gall bladder. It would not have helped!
I have SOD and feel pretty miserable every once in awhile… I am going through a bout of pain these past couple of weeks where I can hardly sit ot lay down. Can’t stand to have my regular jeans on - the waistband hurts!
I take Dicyclomine when I have an attack. I guess it helps relax the sphincter, but I feel pretty poorly and I always feel “FULL” and have misshapen bowel movements. (That is what originally led me to have a colonscopy last year).
Does anyone else experience the same symptoms and what do you do to curb it?
I am currently taking lots of pain and nauseas med and have little to no luck with them. I had my gallbladder remove 7/07 3 MRI 2 CT Scan and all the other test done in Dec 07 had my ERCP done my Feb 08 most of the pain is back. I am seeing a new GI doctor in hopes he has new ideas. Becuase going to the ER every month is getting very hard. If any of you have suggestion on Meds I can try PLEASE let me know. My doctor that did the ERCP said that all my pain is muscle not SOD but muscle pain would not make nausea and vomiting after meals. I and trying differet foods but it seems the only thing that does not hurt to bad is small portions of pastes or Carbs NO MEAT or FAT and there are lots of things that are bad. So can anyone help with suggestions on Meds and foods.
I hate that there are so many people that are dealing with this same thing.
Thanks
Michelle, if you want to curb your symptoms - eat 1/3 the amount of food you are used to eating, reduce your fat intake, try a liver flush, do some wheat grass and kudos to you for not having to get your Gall Bladder removed.
Robert,
Thanks for that advice. I have found that eating smaller meals and low fat is helping immensely. But, I’ve noticed that my hair is falling out. But what choice? I found out about this condition, of course, after years of testing, having the gb removed and my GI doctor just recently telling me that I probably didn’t need my gb removed. I was rushed to the ER at Cooper University Hospital in Camden, NJ two days ago after I took a narcotic drug for dental surgery. Gave the ER doc my history and they came back with SOD. After googling information, I’ve read that if you have SOD, narcotic drugs will make it worse. I have the same nagging pain in the URQ now for 3 years. Not enough to ruin my life, but I ride a bike and train for distance riding and it does interfere with that. I also have diarrhea and take cholestyramine to help with the absorbsion of bile salts.Too much bile salt in the bowel causes diarrhea. This can also look like I have IBS and can easily be diagnosed as such. I also am not sure