Sphincter of Oddi Dysfunction Questions

[SuesQ]

For about a year I had a constant pain behind my rib cage (upper right quadrant) that felt like I had a tennis ball lodged inside me.  In May 2004 I was diagnosed with common bile duct obstruction and had an ERCP with a sphincterotomy.  About 3 months later the pain behind my rib cage returned.  In October 2004 I had an ERCP with manometry, during which I was diagnosed with Sphincter of Oddi Dysfunction.  Another sphinterotomy was performed.  Unfortunately, the procedure resulted in severe acute pancreatitis.  Four months later, I still have some inflammation, but not that severe.  I am concerned because the pain behind my rib cage is coming back.  

1)  What is the liklihood that the sphincterotomy was not successful and that the SOD is back?

2)  If it is SOD, can it be corrected using external surgical methods? Does surgery pose the same risk for pancreatitis?

3)  What risks are involved with doing nothing, assuming I can learn to live with the pain?

Thanks for your input, I really appreciate it.

[Kevin Pho, MD]

To answer your questions:
1) Studies have shown that sphincterotomy improves discomfort in between 70 and 80 percent of patients, so there is a distinct possibility that the procedure was not successful.

2) Yes, surgical methods can be done to treat SOD.  Studies show a somewhat lesser success rate of 60 to 70 percent.  Currently, the endoscopic technique is preferred as it is less invasive.

3) If there is no treatment, it is likely that the pain will continue.  There has been some cases where improvement was made without improvement, but this is an uncommon occurance.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
Medical Weblog:
kevinmd_b

[medical_questions]

My mom, 57, has been dealing with chronic stomach pain for a couple years now. All tests pretty much show everything normal, that is, blood tests, ultrasounds, colonoscopies, endoscopies, and on and on. For the past year or so we've been thinking about SOD. The GI doctors say "yeah, maybe that's what's going on" but nobody gives a sure answer about it. My mom's been real scared to go down that road because of all she hears about it causing pancreatitus (pancreatitis) and, more importantly, about the possibility that it won't really help her.

Anyway, so, Im wondering, can you give me a follow up on your situation? I would love to get to know other people who have been through manometry and sphincterotomies for SOD, to see what their experiences have been like.

Thank you,

Adam

[Jen7777]

Hi,
I have been diagnosed with Sphincter of Oddi Dysfunction just recently.  I have dealt with at least two episodes each year since I had my gallbladder out when I was 17 years old.  This has been going on for approx 25 years now.  I have been to several physicians about it and have had many tests ran.  My next step is to have a sphincterotomy done.  
I want to let you know of some coping techniques that have helped me.  If you are like me, I get tired of having to go to the ER each time this happens, only to be treated strangely since many ER physicians are not aware of this.  Each time they take blood to check the liver and pancreatic enzymes.  My blood tests always come back good.  The pain is awful!!!!!  Compared to a kidney stone pain in the upper right quadrant and through to the back. They also make me drink a GI cocktail.  I tell them not to bother as it is not my stomach that hurts. I'm allergic to demerol so they just give me morphine until the pain stops and then I go home. I have tried the meds that you place under the tongue, but they do not help.  A gastroenterologist suggested that the next time this happens, I should request Torodol via IV to stop the spasm.  This works real well!!!! It needs to be give via IV as intramuscular doesn't work most times.  Another coping tool if it will be awhile until you can get relief is to fill the bathtub with real warm water and soak.  This stops the pain for the time I'm soaking.  Once I get out, though it starts back.  A few times I have been able to stop it completely if I stay in for approx 45 minutes.  
I hope this is of some help for you.

[ozziemike]

I've written in another forum in this area ... but let me tell you of my case. I had gall bladder removed in 1991 and was diagnosed with biliary dyskinesia in 1994. I have had innumerable ERCPs done, two sphincterotomies and yes I got pancreatitis with both. I've also been diagnosed with smooth muscle disease. I still get bouts of severe pain in clusters that put me into hospital several times a year for IV morphine therapy. The pain is acute like an arrow staight through from my ziffisternum (spelling?) to my spine. The sphincterotomies made a profoundly beneficial change to my life and even with the pancreatitis I would still go through with them again (I don't think I had a stent - in fact I'm pretty sure about it). My life post sphincterotomies is a lot better than before but as you can see it is not without pain - it is just a heck of a lot better than the intolerable pain I was in before. What I would recommend is always carrying a letter from your specialist (and keep it up to date) stating your condition and recommended therapy which will avoid you going through a heap of useless tests and delay the start of pain therapy in an unfamiliar ER. I was treated for cardio pains because the pain level was sufficient to change my T line on an ECG - ended up with nitro-induced migraine AND usual pain! Five days of this in cardio ward, I was not a happy fella ...

[nursejenrn]

i had my gallbladder out 12/30/04. i had five hospitalizations from 1998 to 2002 for elevated amylase and lipase levels and pacreatitis. after the gallbladder removal, i had a bile leak as a complication to the surgery. so, i never got better. we waited and waited for the pain to go away as the bile absorbed, and it never did. here it is 4/26/05 and i am still on oxycontin and dilaudid. i have been hospitalized three times since the gallbladder removal for pain. all of my labs and scans/xrays/egd/ercps were all normal. i guess i am the picture of health except for the crippling pain. i was completely worked up by well respected gastroenterologists. my brother is a cardiologist and asked his best friend, who happens to be a GI doctor, what we should do. he told me to go to these two doctors at the university/county hospital because they were the most published on pancreatic and bile leak issues (on sphincter of oddi dysfunction). so, i went to see them, much to the chagrin of my internist. my internist told me that "they like to cut sphincters" at their clinic. i am a registered nurse and have personally worked with these guys and it seemed that their patients never seemed to get better (but why would i see people that got better if i worked only in the hospital? duh!). anyway, i underwent an endoscopic ultrasound yesterday which showed a perfectly normal pancreas. my MRCP was grossly normal. so, here i am with a diagnosis of sphincter of oddi dysfunction. i am so lucky to be working with doctors that have known me for years otherwise i don't think they would believe that my pain is real. i hear stories of patients that no one believes and they suffer. i am on 80 mg of oxycontin a day with dilaudid for breakthrough pain. my career as a critical care nurse is over. i am so scared to go through the sphincter stenting and sphincterotomy. i just don't see that anyone gets any better from this. maybe it's because i just haven't met them! i only meet the ones that never get better. anybody out there ever gotten better after the stenting? i'm scared and depressed. what a life altering experience at the age of 35. i have two children; corey is 3 and ted is 18 months old. i wonder why this has happened to all of us. anyway, would love to hear from anyone with stories of this disease. thanks for listening! jennifer

[MoeMcGinty]

I had my gallbladder removed approx. 10 years ago, never had any problems, until about a year ago when I started with right upper quadrant pain. Amylase and Liver enzymes were normal except when I had the pain. Wound up having a spincterectomy and a stint place in the pancrease. It is 6 months later and back to square one...pain is back...should I go for another stint?

[becaloo]

I had my gallbladder out  4 years ago and have been to the ER
4x I have severe spasms and vomiting the only thing they ever find is 1 elevated liver enzyme then when I go to my regular doctor it is back to normal. He put me on Hyoscamine the last time i had a spell it stopped it within 10 minutes but it also made me very sleepy but i don't mind.

[medical_questions]

Three weeks ago my mom had the sphincterotomy and a stent placed. The manometry showed high pressures, the duct was dilated and even "angulated." The stent was suppose to straighten the duct. She has had no relief. In fact, possibly even worse pain. Is surgery our next option? Perhaps a longer stent? We'll see. I'll post again soon.

You know there's a support group for everything in the world, EXCEPT SOD. (Just to add to the nightmare of this condition.)

[RPIJW]

Amazing. These stories are shocking similar to my wife’s. She is currently in the hospital (she has been there for over a month – since 4-28). Almost word for word my wife has had the same complication all starting from her having her gallbladder removed (2/03). Over the past two year she has been hospitalize 5 times. Right now her liver enzymes (ALT/AST) are up and she has chronic pain in her the center & upper right quadrant of her chest. All the doctors are clueless as to what is going on. She has seen approximately 10-15 different GI/Medicine Residents/Doctors.  The sad thing is, some of them they think it is all in her head. So much so that they sent a shrink to see her because they think she is some kind of pill popper or alcoholic (she doesn’t drink at all).

I hate to say it but I’m glad there are other people out there experiencing the same thing as us. She has had every blood/GI test under the sun(2 ERCP/MRCP CT,MRI, etc.  The only thing she hasn’t had done is a test for Oddi. They are planning a liver biopsy because they think she may have autoimmune hepatitis. They are also thinking of transferring her to NYC or Boston. It’s amazing how on event can change your life. We are both 26 with a 9 year old and have accomplished a lot despite being so young when we had our child. I wish someone out there could shed some light. But our future doesn’t sound promising as it seems no one with our history ever gets better.
I will keep the board informed as what happens.

[doc holiday]

See my posting under undciagnosable RUQ pain cyst related

[ddlembo]

Oh my God!  I am crying as I am reading this.  I just had my gallbladder taken out on 5/24 after over a year of the gallbladder pain.  I was doing well after my surgery until Tuesday of last week.  I have more pain now than I did before!  I went to the doctor today for my post-op and he thinks I may have the Oddi dysfunction now.  I cannot believe this.  I am 32 and I don't know what to do now.  I am scared to death.  The pain has progressively gotten worse over the last week and it is especially bad after I sit for for long periods and driving is a horrible experience now.  I read the posts and I feel just like the poster who said they had a tennis ball stuck under they rib cage.  My belly feels like its full of gas and very distended too.  Th pain goes into my back as well.  I talked to so many people who had they gallbladder out and this did not happen to any of them.  I didn't have any stones but had a 0% ejection fraction so we were certain that is what was causing the pain.  How can people live like this?  I am so discouraged.

[ginnsu]

I can't believe what I'm reading (and I've been reading A LOT). Of all the things I've been reading on the internet these stories are the closest to mine of anything I've read. It's comforting to know I'm not alone.

I've been to the ER 4 times in the last 8 months. It's always the same intense epigastric pain accompanied by vomiting, shaking, hyperventilating, diarrhea. They told me the first two times it was the flu. I came away thinking I was a wimp for not being able to handle the flu. The third attack landed me in the hospital for dehydration. Like a post before the only thing that has helped so far was morphine, toradol and phenergan (the phenergan knocks me out and I don't care how much pain I'm in!!) While in the hospital they ran every test known to mankind and only uncovered a low functioning gallbladder. They removed my gallbladder but last week I had another attack and went back to the ER. This time my amalyse and bilirubin was elevated. I went back to my surgeon and he thought I had an acute pancreatitic attack. He sent me to a GI doc who isn't convinced and thinks its a sphincter of oddi problem. I'm scheduled to have a ERCP in 3 weeks. I'm scared of the complications but it seems this is my ONLY option if I want some answers. And I'm not convinved I'm going to get answers either. AND I'm certianly not guaranteed that my pain won't come back. I'm darned if I do and darned if I don't.

I'm amazed that this baffles the docs so much!!! I know they're only human but every doc gives me a different answer. And one doc in the hospital thought I was doing this for attention. Between his comments and the lack of answers I am slipping into depression. Before my first attack I was a VERY healthy, very active 36 year old woman and mother of 5. And now I'm nauseous all the time and always scared of another attack.

Doesn't it feel so lonely when noone believes you and noone can help??

[Moonflowerpc]

I have had a MRCP (with normal results) done and am now scheduled for an ERCP 6/28.  I too am terrified of getting pancreatitis, having been in pain off and on since 1991.  My gallbladder was removed LAP in 1992 in hopes that would get rid of the right upper quadrant pain but did not.  The pain has progressively gotten worse over the past year.  I've also had  an endoscopy, upper GI and colonoscopy, (all with normal results) in January 2005.  My blood work is always normal, which confuses everyone. I guess because they think something "has" to be elevated.  I was diagnosed with gastroparesis in 1999 but since have been told I do not have it....go figure.  Several years ago it was noted in one of the CT scans that I have a fatty liver, which I guess could be due to my having hyperlipidemia.   This pain is very real and affects every aspect of my life and is very depressing.  I do not take any kind of pain meds as I would not be able to work.  Every day is a marathon just to get through the day.  The only thing that helps is to sit in my recliner or go to bed and rest on my left side until the pain gets better.

[Lissie]

Hello everyone...i am new here...i am 21 very scared and depressed and need some advice. Well to make a long story short i suffer from endometrosis which has been very difficult to say the least...for those who do not know about that it is a diease which is chronic pain in the female reproductive area and can cause infertility (another thing i am petrified of)I have been throught 3 surgeries already for my endo. Ok back to the point...about a month ago i was experiencing EXTREME pain in my upper stomach and my stomach was distended i went to the er and they didnt listen to me just said it was my endo (WHICH IT IS NOT COMPLETELY DIFFERENT PAIN AND LOCATION) excatly 5 days later same pain came back only this time 100 times worse and i couldn't stop vomiting. My fiance called the ambulance and back to the er i went. I was there for 5 days and they found out my gallbladder was only functioning 13% so i had my 4th surgery (excatly 3 weeks from the surgery for my endo where they removed my appendix as well imagine my surprise!)So they sent me home after the surgery. Excatly 2 days later SAME PAIN!! Took the ambulance back to the er and was there for another 5 days. They did an endoscopy and said my stomach was inflammed and that was causing all the pain and bloating. So i begged them to send me home. Well i went back to see the surgeon on thrus and he took one look at my distended stomach and told me that something wasnt right (which i already knew) so he said he thought it was the SOD. He prescribed nifedipine and told me to see how that worked. Well last night i had another attack!! I thought i was going to die. So i took the meds at 6:50 and by 9 the pain was completely gone. So it worked! Now what do i do? Take this med every night for the rest of my life? I'm going back to see the surgeon on thurs so i will talk to him about it im just scared. I can't deal with the endo pain and now this! This is affecting my life greatly, i can't work let alone eat! Im just so scared and depressed...if anyone has any advice or any info they would like to share with me that would be wonderful....sorry it's so long and thank you for reading...take care everyone! <3 Lissie

[loubi1]

Hi All

Reading your stories makes me feel as though I'm not alone.  My gallbladder dysfunction was mis-diagnosed, and I suffered for 5 years before it was finally recognised as something other than irritable bowel syndrome.  by the time I reached the surgical stage, my gallbladder was on the verge of rupture and I had gallstones the size of marbles!

My operation went fine, and I was discharged from hospital after 2 days, healed well, and returned to work within 6 weeks, in June 2004.

Two months later I began to recognise the old symptoms coming back (whilst out shopping)took the good old pain relief, which didn't work and was admitted to hospital where I was discharged after IV morphine and a diagnosis of possible indigestion!!!

these symptoms have now continued, and I was hospitalised in February 05 for raised amylaze, which I have to report on subsequent attacks (2 so far) so that they can double check.  Like everyone who seems to have posted a message, there seems to be little knowledge or understanding from doctors, who simply think that a shot of morphine will cure all.

However, I cannot envisage the rest of my life popping strong medication or frequent trips to hospital, and wondered if anyone has had any success from alternative treatments to surgery other than the low fat diet that doctors in England seem to think will cure anything!

Ladies, I don't know if anyone else has this experience, but my attacks always seem to be triggered a day or so before that monthly joy.  I haven't been diagnosed with SOD as yet, but after reading all your stories, am pretty convinced that this is the most probable explanation.

I have to say that I really admire you all, as you carry on despite this debilitating affliction (I find it so tiring)  Like many of you I am a working mother with 5 children to support, and am sick of spending time away from work (and associated salary)because of this.

Bless you all - you are in my thoughts

[ginnsu]

I think all 4 of my attacks have happened within 2 days of starting my period too. My ob/gyn said there isn't anything related that would cause stomach pain but I question that. I also wonder if my attacks are related to the ibuprofen I take for cramps. My doc says I'd have to take large amounts to cause the pain I suffer but I also question that.

Has anyone else seen a connection between their attacks and their cycle???

[Marcie R]

I am so glad that I found all of this wonderful information. I thought I was alone.  I had to diagnose myself.  I am 36 years old.  I had my gallbladder out 12 years ago.  About 11 years ago I started having pain in my upper stomach that circled to my upper back.  I would get flushed, hot flashes, I would have to strip my clothes off.  Sometimes I would have to vomit, sometimes diarrhea.   The pain is horrible.  I would go to my Doctor and he would to tell my it was muscle spasms, acid reflux, gas, etc.  To this day, almost 12 years later my Doctor still does not know what it is.  I have told him about the horrible pain, he has prescribed Toradal, Soma, Vicodin, just to name a few.  Now I think that some of these meds made the attack worse.  One of the things that helps get thru my attacks are walking around the house rubbing my stomach furiously and then lying down on the bed while my husband rubs my back as hard as he can.  The attacks normally last 2 hours.  The longest two hours of my life.  At my house we call them the "freak out pains".  I have been to ER once and was hooked up to a heart monitor, ekg, etc.  They thought I was having a heart attack because my chest was hurting.  They finally gave me toradal via IV.  That helped SO much.  I have been doing research on this for the past two weeks.  I plan on printing all of this out and taking it to my Doctor, and telling him I really think this is what I have.  It is so wonderful to know there are other people out there that have this.  I would love to talk with any of you about this.  Please email me at ***@****.

[tarczely]

hi all,
just wanted to post my story after 3 1/2 years of in and out of the hospital with what they said was cornary artery spasms...i have been on so much meds and nitro etc.  well each time i would go in with this servere pain after staying at home trying to tough it out and taking to vicadin for the pain i would go and get admitted and get morphine which would double me over....so then they started given me toradal iv.  which helped alot.  
i alway keep saying this is somehting to do with eating i would eat pizza not even leave the resturant and pain would start, sometimes just drinking my am coffee.
and the other sign was that my liver enzymes would go up everytime i would be admitted, the last time 10x the normal that i when they did the spinterromty (spell) well that was 2 weeks ago and iam 90% better i have gone from taking 2 pain pills a day to one a week.

i still have to go back to the specialist and they said they might have to cut a little more to make it go away totally!

but who would have thought I was hospitalized 3 times just in june to give you an idea of what was going on and had two heart caths in the over three years.

it finally took me to say wait!!!!!!!! this is nuts you guys are not listening to ME!

feel better everyone, and I guess I was lucky no side affects from the sugery, I had to eat very little for about a week.

good luck email if you want to more lynn at ***@****
beleive i know what you all are going thru, had my liver enzymes not been so bad I still don't think they would have beleived me!

[dakotagal]

I have been doing some research to try and explain some of my gallbladder symptoms.  I am scheduled to have mine removed but my symptoms are not "in line" with most gallbladder dysfunctions.   My pain comes when I sit down.  It feels like a tennis ball is stuck under my rib and back and it is impossible to drive for longer than 20 minutes or so.  I have only seen one similar comment on this site and it was from someone who already had their gallbladder removed. Can anyone comment that might've had this symptom and if they had any luck after their gallbladder was removed. I hate to have an organ removed and it ended up being the sphincter of oddi that was the cause of the pain. I would appreciate any advice. Thanks.

[dakotagal]

I was curious if you can follow up on your situation.  Your symptoms are identical to mine and you are the only one I have found so far to have pain while sitting-----I am scheduled to have my gallbladder removed but because you are experiencing the same pain as mine and you had yours out----I am not sure if that is the answer to my situation.  I hate to have an unnecessary organ removal!  I would appreciate a follow-up which may answer a few things for me.

[MINIgal]

Wow...  so many people with similar problems, yet so many doctors just write us off.  I never had any kind of pain like this before January of this year (I turned 40 in March).  At first, I'd feel this squeezing, gnawing pain in my mid-back after having a glass of wine at dinner on occasion... I was awakened a few of times during the night here and there with gnawing epigastric and mid-back pain.  Then I had a major attack in early April, and went to the ER.  Blood work and CAT scans were "normal," so they gave me morphine (which I hated) and sent me home.  My doc thought maybe I passed a kidney stone.  

But the pain only subsided and never completely went away.  Finally, a HIDA scan showed 16% ejection fraction, and they yanked my gallbladder (no stones).  I expected full relief, but the pain came back right away.  Got scoped to check for an ulcer; no ulcer.  My gastro then just decided it's "IBS" and wanted to put me on antidepressants.  I declined.

I finally found a doc who will listen to me and not blow me off.  He's referred me to a diagnostic hospital for an ERCP, but I can't get in until next month.

Meanwhile, the pain persists, but I get used to it.  If it gets really bad, I take half a Vicodin, and that usually gives me a few hours of relief.  

Here's my question -- If it is SOD, why does it just show up so suddenly this year?  I'm hardly a heavy drinker (maybe 2 drinks per month), never smoked, etc.  I see all ages in here, so I don't think it's just age-related.  But it does seem to be mostly women -- could hormones trigger the dysfunction?

If anyone has any good stories, I hope they will post.

[ginnsu]

I wanted to give an update. I had my ERCP last week. They found a blocked bile duct and a pancreatic duct that was looped.They put a stent in my pancreatic duct and opened the other duct. My pressures were well over 100. The ERCP gave me pancreatitis and I was in the hospital for a week but boy was it worth it to find the answer to all my pain.

[SDSP]

I had gall bladder surgery and exploratory surgery simultaneously in 1968.  I had several small gall stones at the age of 20.  I was never "right" therafter.  However, the self-righteous doctor had already claimed it was all "emotional" before he finally found the gall stones so there was no way I could tell him.  

I find that I get severe "gall bladder attacks" (and, yes, I know the gall bladder is no longer there - I'm just describing what it feels like) whenever I have to take any kind of narcotic or antimotility drug.  i.e., Lomotil, demerol, codeine, morphine - you name it.  This is a serious problem because doctors don't seem to understand it and just stare at me incredulously.  In fact, one jerk of an ENT in this major SW city told me to "just take more" when I told him that the narcotic pain killers would cause severe pain.  

Several years ago the head GI at a medical school send I had "hypertonus of the sphincter of Oddi."  Powerful smooth muscle relaxants will help but they cause all kinds of mental reactions - hallucinating and panic attacks plus I can't function when stoned on spin-offs of atropine.  I don't understand why this happened.  Has any one else had this experience where the gall bladder type of pain returns when taking narcotic type meds?  It doesn't happen with food - I can eat greasy, spicy food w/o pain.  The disorder rules out any procedures as I can't take the pain killers necessary for a procedure.  Right now I can't say enough bad things about most doctors.  

[spotbird]

Guaifenesin may help. I had my gall bladder out in May and the pain returned about a month later.  The whole thing has been an ordeal which has caused me to lose what little faith I had in the medical community.  Treatment is hit or miss, complications annoy more than concern treating physicians, but you all know that.  Consequent to my mistrust I have not had my new pain diagnosed, so take my advice with a grain of salt. That said, the pain is identical to the descriptions sphincter of Oddi dysfunction.

Anyway I reasoned that if it is mucus that is causing the problem it is possible Guaifenesin would help, with nothing to lose I tried it.  To my absolute amazment it did reduce the pain and rather quickly. The pain isn’t gone, but any improvement is welcome.  Guaifenesin liquefies mucus so it’s used for colds and coughs.  Years ago I read that it helped some infertile couples conceive when the infertility was caused by too-thick cervical mucus, so I figured it must liquefy the stuff all over the body.  

I’m a strong believer in the placebo effect as well as the power of coincidence, either of those could account for my experience, but truly you have nothing to lose by trying it. There are few side effects.

[dakotagal]

How come they don't rule out SOD before removing the gallbladder?  Does anyone know?  I can't seem to find a good answer to that?  Is an ERCP the ONLY test that checks for SOD?  Would a low ejection rate also happen with SOD? If anyone has any answers please post.

[MINIgal]

My gastroenterologist said that a low ejection fraction for the gallbladder can be caused by SOD.  What I recall from how he explained it is that the spasm of the SO prevents the gallbladder from functioning as it should, hence the low ejection fraction.

I had a 16% EF, and had my gallbladder out in early May.  No relief from the pain.  I have it daily.  I isn't really getting worse (overall), so I kind of get used to it, but acts up sometimes and that sucks.  Like when I eat or drink something very cold (as in a lot during the summer!), and the pain really intensifies then.

I'm supposed to see a specialist next month to decide whether to do an ERCP.  I don't know what my blood levels are, but I bought some urine test strips, and the strips frequently show apparently high levels of bilirubin in my urine.  I tested my husband for a "control," and he tested negative.  So, unless my female hormones are causing the test to read incorrectly...

[dakotagal]

Thanks for the answer.  Could you explain your symptoms----does it feel like a tennis ball is lodged in your rib cage and worse when you sit?

[MINIgal]

I never felt a tennis-ball type pain, even before I had my GB out.  The pain in my side (upper right side) feels like a sharp, squeezing pain (sometimes kind of like a runner's cramp), but it is intermittent.  The more constant pain I feel is in my midback -- it is a gnawing, almost burning type of pain.  It is really bad if I lie flat on my back, less so if I lie on my right side, and most tolerable if I lie on my left side.

The pain in my back gets worse after meals sometimes, but it's not completely predictable when it will worsen or after what type of food.  One exception -- eating or drinking something very cold (e.g., a popsicle) makes it really bad.

The pain sometimes extends all the way around and feels like a belt around my lower chest.

[tarczely]

up date on my sphincteromtry (spell) well since having that don over a month ago i was good for about two weeks.  Now the pain has returned.  Went back to the dr and he has me keeping track of everything i eat and drink to see if there is something we can just cut out, well i would have to stop eating.  so monday i go again and in sept iam having a endo ultrasound. I think they are going to have to do more sugery.  I can't beleive this just will not go away.
but i feel like at least iam on the right track, after feeling so well after the first sugery.

anyone else have this problem after the first sugery?

[whimzeelee]

Wow is all I can say about everything I've just read in this thread!  This past Thursday 7/28 I had to have emergency removal of my gallbladder.  I'm 41 and have had an attack here and there, but on 7/22 I had a major attack that lasted 4 hours and spiking a fever of 102.3.  I should have gone to the ER, but just didn't want to.  I rested over the weekend and on 7/26 I realized I was looking "yellow" and this caused enough concern that I made a visit to my GP for bloodwork.  The bloodwork came back on 7/27 with extremely high Liver values and bilirubin and he sent me for an ultrasound on 7/28.  I had another bad night on the 27th and knew something was definitely wrong.  

Some history over the last couple of months...I was diagnosed with a staph infection and put on erythromycin for 30 days.  I'm freaking since I read on-line that this antibiotic can cause jaundice and liver damage!!!  

My ultrasound showed stones in my gallbladder and a thickening of the wall next to my liver and he sent me off to the hospital, where they promptly got me right in and into surgery.  Needless to say I wasn't ready for surgery, but they felt it was acute cholesytitis and needed to come out ASAP.  I spent a night in the hospital and have been home recovering and wondering if I will ever be able to eat again.  I can eat jello and am in the bathroom with yellow/bile diarrhea.  I feel like I'm having a heart attack from the stomach bile constantly.  

I realize I'm only a couple of days out of surgery, but decided to search out some info on-line and here I am.

My bilirubin continued to rise after surgery and they did a liver biopsy to determine what else may be going on.  I'll find out more later this week.  Needless to say I'm concerned about the liver the most.

[MINIgal]

Wow, sorry to hear you've been through so much.  Makes me feel bad for even feeling a little sorry for myself.  Yes, I have constant pain, but it's not debilitating, just frustrating -- especially since I know they probably cannot fix it (or won't try since, if I have SOD, I'm probably a Type III).

I sure hope you feel better... I had a lot of pain after my GB surgery, but after about 5-6 days, I was up and around just fine, with almost no "bathroom type" troubles -- just continued mid-back pain.

Hang in there, everyone.

[astros18]

After going thru so much pain and finding no answers from doctors, who basically wrote me off and tried to put me on antidepressants (who wouldn't be depressed with all that pain), I found my answers on curezone.com. Good luck to all my gallbladderless still in pain sisters out there. You are not crazy and pain is not normal!

[georgie430]

HI I was so interested to read your post about urq pain after taking opiod based pain- meds.  I have had this for about seven years, did have stones in gb had it remved 3 years ago, but pain is still there, I had read somewhere (dont remember) about
people with sod having hard time with narcotics, I would really
like to speak with you further. I'am a 43 year old woman, and I live in upstate new york.

[Sick Nikki]

Hey everyone!  well I am going for a hydascan tomorrow and am a bit nervous.  Has anyone had this test?  I already had my gallbladder taken out 10 yrs ago and now i have a squeezing, quite annoying pain in my right side and CONSTANT nausea.  As I read all your comments I see everyone complaining of pain but only one other with nausea, does any one else suffer from constant nausea? I take reglan every night just to sleep!  I was happy to hear there may be a diagnosis to relieve me and as I read all your comments i have become quite upset.  I cry everyday because I am so hungry but cant eat due to nausea and soooooo frustrated, this sickness is ruining my job and my relationship and all i see is how no one seems to be getting better.  I wonder does the nausea at least go away, im still young and hope to have children but i cant do that if im nauseous all day everyday i can barely function as it is.  help! is there anything that works?..I dont care if its surgury!  WHAT HELPS SOD?

[ERIN> PLEASE LOOK AT THIS!]

Honeslty for people who have this disorder ask yous specailist about.  

CHOLESTYRAMINE 4G PK.



  This has worked for me, it's a grainy powder that helps collect

the bile, and helps you digest your food, which stops the pain,

attacks, and feeling lousy. It was created for people with  high

cholesteral, but has worked for me, and people with Sphincter of

Oddi Dysfunction. Please give me some feedback, I hope Ive helped

you. I'm only a 17 year olds, and I understand the depression

part of it, I've had my gallbladder out for 2 years now. Although

we have to go threw so much. This medication honestly helps for

the attacks.



*After, or during an attack I ussualy drink it, and truthfully after about 2 minnutes it's gone. It comes in two flavours. Orange or a lemon flavour. I ussualy mix it with pulp orange juice and you can hardly taste the grainyness.




PlEASE LET ME KNOW HOW THIS WORKS FOR YOU OR WHAT YOUR DOCTER RECOMENDS> This has actually changed my life.
Thanks, Erin :)

Good luck

[Marcie R]

I had my Hidascan done yesterday.  The radiologist was wonderful and gave me the results.  If you read above, you will see my post and my story.  The scan was no problem and they could find nothing wrong.  Everything is fine, no blockages, obstructions.  So we are on to the next round of tests.  I have a CT scan on Monday.  I will let everyone know how that goes.  Please let me us know the results of your Hidascan.

[shannonv33]

WOW, finally I found a website where people are just like me. I had my pain start in feb, they took my gallbladder out in april, and it made things worse. I thought I was nuts at first, everyone I knew that had their gallbladder out said I should of felt great but I didnt. After alot of test and doctors visits they said SOD. My gastro doctor frowns on ERCPs, says theres alot of compalcations and doesnt help SOD very often. He put me on three medications, and most of the time they help. I was having alot more attacks, but now there just here and there. I have put on 20lbs from just laying around and not feeling good. I also got IBS from having my gallbladder removed, pretty much has ruined my life. I have three children and a great husband, they help out a lot. Its very depressing thinking that my life is going to be this way forever. Wish I still had my gallbladder, I think alot of doctors are to quick to cut, and should check into things more before taking out one of your body parts. No one ever told me that I could get IBS from getting my gallbladder out, found that one out later. One of us should come up with a chat line on yahoo or something. See whos doing what, and whats helping some people. If anyone wants to just post reply and we will put one together. I would love to chat to other people on how bad I feel, and know they feel the same. I know my family has to be getting sick of hearing me complain LOL.

[Marcie R]

Would love to talk to you.  What meds are you on?  I ALSO have IBS.  I am constantly running to the bathroom.  

My email is ***@****.

Marcie

[Marcie R]

Would love to talk to you.  What meds are you on?  I ALSO have IBS.  I am constanly running to the bathroom.  

Please email me at ***@****.

Marcie

[shannonv33]

Isnt the stuff your talking about in the packet, off bran name for Questran. I have tried that stuff for my diarrhea and it seems to make me worse. I got bloated and terrible cramps, and it didnt seem to help much.

[mnhoopgirl42]

A related discussion, How do I find Results? was started.

[mnhoopgirl42]

A related discussion, Help please! was started.

[thelittlethings]

A related discussion, SOD and hypoglycemia was started.