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.

[Luckyace]

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[thelittlethings]

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[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.

[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

[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

[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]

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.

[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

[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?

[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.

[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!

[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.

[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.

[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?

[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.

[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]

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]

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.

[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

[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.