Biliary Pain Without A Gallbladder!

[jillio25]

I had my gallbladder removed after I developed gallstones while I was pregnant.  I had my gallbladder removed in August of last year and recently have been suffering from very severe pains in the right upper quadrant.  I have made 3 visits to the ER over the past 6 days, and all of the doctors tell me different things.  One said he thought I could have stones, but nothing showed on my blood tests.  The other said that he thought I had stones and that my liver enzymes were elevated, and the last said that he didn't have any idea what could be going on.  I saw the Gastroenterologist yesterday and he pretty much told me that he didn't know what it was because my blood tests were normal except for the time when my liver enzymes were elevated. He said that it could be SOD but that he doesn't really consider that a medical problem and that the risks of doing any tests were too much to continue to see if that is the problem.  He recommended that we do the ERCP but that he wasn't very confident that he would find anything.  I don't know what is going on, but I'm tired of getting the run around and feeling like they think that nothing is wrong with me and I'm just in there for the pain meds.  I would like to have an idea of what could be causing this, and what the options are, rather than be told that they have no idea and don't want to do anything to help me. I need help!

[jamester76]

This all sounds way too familiar to me... see my post titled "Upper right abdominal pain - Gallbladder has been removed".   I've been to my surgeon and had a CT scan, been to a GI specialist and had the old camera shoved down my throat, and even had a chest x-ray.  No problems found except "fatty liver infiltration".     None of these medical professionals seems to understand that when I say I am in pain, I am in PAIN!   I have a very high threshold of pain, and if I'm complaining, there damn well is something wrong.   The pains are almost identical to what I experienced when my gall bladder was still with me, except now they're even worse at times, including burning in my intestinals which I never had with my gallbladder there....

[jillio25]

Hey, yeah I know I need to find a doc who knows what he's doing.  I'm going to as for a referral to the doc in san fran that my doc said did the manometry.  I hope that he will be able to help me.  I'm still unsure of what exactly is going on.  It ***** though because almost everything I eat is setting the pain off.  So now I am living on a diet of rice, cereal, bread, and chicken.  Well at least I know I'll be losing a bunch of weight! Its horrible to have to be in fear EVERYTIME you eat! I feel like I cant eat anything anymore! Ive also started to have feelings of light headedness and dizziness, as well as some nausea.  Tried to tell the doc this on my last ER visit, but he didn't seem too interested.  I swear to god they are all just thinking that I am in there trying to get drugs! Its a horrible feeling to feel like the doctors dont believe you, and even worse, dont know whats going on, and won't do anything to help! I don't know what to do anymore! But like I said I'm going to ask for the referral to the other doctor and see if he can help figure out what the heck is going on! Thanks for your help!

[jillio25]

Hey, ya it sounds like you are having something very similar to what I have had going on.  I don't know if your blood tests came back normal, but mine did!  They were telling me almost the same thing that it was probably indigestion, but I know it isn't.  SOD is Sphincter of Oddi Dysfunction.  The Sphincter of Oddi is right by the Common Bile Duct that was once connected to your Gallbladder.  SOD is when the sphincter of oddi contracts and spasms causing pain!  The doc told me that there was a possibility that this could be the problem for me, but he wasn't sure.  The ERCP (I dont remember the whole name, sorry!) is when they knock you out and send the camera down your throat and through your stomach to see if they can find out what is going on.  There are some complications that can occur with this, my doc says the most common is pancreatitis, which he said happens in 5% of cases.  I dont know about the white cells being low. Usually if there is some kind of infection they would be high, so I dont think that thats it, I dont remember off the top of my head what a low count means.  I hope that this helps!

[amyjo819]

My situation is quite close to yours.  I had my gb removed a year ago am experiencing sharp to dull pain where the gb was and it radiates to my back. This has been going on for weeks. I went into the ER and they did blood work, took urine and a scan.  He came back with Indigestion gave me a scip for that and a pain killer.  I know this was misdiagnosed.  Can you please tell me what SOD is and ERCP?  Also I will include my white cell count has been low for over a month.  I do not know if that is related or not.

[CalGal]

Jillo, I hate to repeat this again, but I can't stress strongly enough that you not do the ERCP unless the pressure readings (manometry) CAN be done. You have no idea of the amount of problems that can be caused by an unknowing GI person who will routinely cut the sphincter to forestall problems in the future. It does nothing to stop the problems and may cause many, many more that can make a person's life miserable. And trying to change that 'miserable' to something more tolerable may become the only thing a person does for many years of their life.

Before you go the route of an ERCP without manometry, PLEASE find a doc that knows what they're doing.

[jillio25]

Hey, thanks for the information.  I ended up in the ER again last night, and it was the same old stuff, dope me up, tell me that my tests are normal, and send me home.  I'm so frustrated because it feels like they are just accusing me of being a drug addict or something!  First of all, I HATE taking any medications unless I ABSOLUTELY have to! I have a 9 month old son to take care of, I don't want to be all doped up and watching him!  The gastroenterologist that I saw was basically trying to talk me out of doing anything, like he thought that there was nothing going on! It really ***** to think that he doesn't have a clue whats going on.  He was telling me that doing the tests for SOD were pretty much pointless because once again, it wasn't considered an ACTUAL medical problem.  He was saying something about a pressure test but that they don't do it at that hospital and that it would basically be impossible to find someone around the area that does it.  So I don't know what to do, or how to approach this problem.  I'm sick of going to the ER and I would like some answers, but like the doctor told me, he doesn't think that he will find anything by doing the ERCP even though he recommended that I do it anyways.  I don't know, I'm becoming even more frustrated with the problem, and starting to feel like there are no answers and that I'm going to have to live with it for the rest of my life!  And as far as the low fat diet goes... I cant even do that!  At the moment I have only found a handfull of things that don't upset it... cereal, low fat yogurt, granola, and rice.  Everything else seems to upset it!  But I dont know how long I live on just that stuff! I guess we'll see what happens in two weeks when I go in for my ERCP... until then its hardly any food, and more trips to the ER!!!

[CalGal]

Here's the link: http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease1&organ=3&disease=12&lang_id=1

[CalGal]

He doesn't see SOD as a medical problem???? Excuse me???? Run away from this guy as fast as you can. You do NOT want this GI person touching you.

SOD is a very serious medical issue and if that is going on, you need to seek out the very best person you can find who specializes in the condition. It's not a condition that should be treated by anyone other than someone with one heck of a lot of experience. And if an ERCP is done, it HAS to be done with manometry - period! It's the only way to diagnose SOD - by the evidence of elevated intraductal pressure. And if it is elevated, it's the ONLY indication to perform a sphincterotomy - cutting the sphincter of Oddi.

Go find a GI doc with some knowledge in the field. I'll post a link you can check out on the subject after I go back and find it. In the meantime, follow a low fat diet. You might also want to ask your doc if you could start taking some anti-spasm meds to try to keep the possible spasming - which might be causing the pain - to a minimum.