Constant RUQ abdominal pain

[Pixie1969too]

Hello,
I'm a 33 year old female with a myriad of problems.  The biggest one right now seems to be constant abdominal pain on the right side, sometimes it seems that it is just below my ribs and others it is closer to my waist area.  This pain does not leave.  Ever.  And it is not relieved by anything I've tried. There are some days it is worse than others, but I can no longer sleep on my right side due to it. It is not affected by food.  I had this pain before my gallbladder was removed (lap choly 10/01) and it seems to be worse now.  I've been told it is from IBS but honestly I don't think it is.  I also have severe abdominal cramping following my first meal (which is sometimes just crackers or something like that) almost every single day that will usually lead to several bouts of explosive diarrhea unless I take Immodium preventively every day (which doesn't always help).  Very often when I am having these bouts of diarrhea I notice that as the diarrhea bathroom trips go on it becomes completely clear and watery and an intense bright yellow color - and to describe how badly it burns is impossible.  Then the next trip to the bathroom will consist of just mucus.  It makes me want to die.  

My ALT (72) and AST (36) are slightly elevated (have been for years). I also have Fatty Liver. Had an MRCP to rule out problems with the duct and it was normal. Over the past couple of years have had many various imaging scans, barium studies, colonoscopy, EGD, was tested for Mastocytosis (have dermatographism and flushing episodes) and Carcinoid Syndrome (5HIAA was 6.8 first time then neg. 2nd time), both neg.  History of polyps in colon (1 was an adenoma) and polyps in stomach; gastritis, GERD, esophagitis, hiatal hernia. Also have PCOS/Stein Leventhal Syndrome with insulin resistance which is getting worse. Protonix is the latest med for acid that I'm trying, the others have either stopped working or ended up making the burning/gnawing feeling worse. One of my biopsies during the last colonoscopy showed "Ileal mucosa with congestion" and that doesn't seem to be too far away according to the diagram from where my pain is but I could be way off on that. The picture looks like it is right near where my appendix is, just above it.

Current meds are Glucophage XR 1500 mg, Protonix, a multivitamin, and last night started Flaxseed Oil due to severe dry eyes following Lasik Surgery.  

I don't dispute the fact that I have IBS.  Although I do predominantly have diarrhea, there are occasions where I am constipated (mostly due to taking lots of Immodium though I think).  But this pain seems to be independent of the diarrhea; it's not relieved by it nor does it seem to cause it nor be caused by it.  It is constant.  My gastro suggested last visit that he may have to send me to a university hosp. in NYC. I'm all for it at this point; my quality of life stinks.  

Can you offer ANY insight or give any direction?  I'm at my wit's end..  Thanks so much in advance.

[krisg]

SOD stands for "Sphincter of Oddi Dysfunction".  The sphincter muscle is located at the end of the bile duct.  Bile and pancreatic juices enter the duodenum through this muscle. It seems that some people (including myself) have increased pressure in this muscle once the gallbladder is gone.  My sphincter was clammed shut and was not opening when it was supposed to, causing a backup of bile into the liver. That resulted in elevated liver enzymes on a blood test.  The times that this happened were extremely painful if not debilitating.  It also took me almost 5 years to get a proper diagnoses.  The gold standard for testing is an ERCP (they put a scope down through the stomache and into the duodenum and inject dye into the bile duct and pancreatic duct to check for any abnormalities and then test the sphincter for high pressure).  Do a search under Yahoo or Google.  You will find alot of useful information to take with you on the next dr. appt.  A MRCP is just a MRI of the biliary tree.  They can also check for blockages and stones, etc. in the ducts.  The MRI is much safer and does not require any prep but a 4 hour fasting.  Also, I will mention that the ERCP does require a specialist to perform it.  Your best bet would be to go to a University Hospital if possible and seek a specialist there.  Good Luck

[dlogan]

I can't believe there are so many people out there with such similar symptoms and not many concrete answers.  

I have an 18 year old daughter who has been having similar symptoms for 2-1/2 years.  She began bouts of vomiting and diarrhea when she was 16 years old.  She would vomit for a couple hours straight some nights.  Right after her 17th birthday she had her gull bladder removed because a hidascan (sp?) showed it was only functioning 20%.  Her symptoms never improved after its removal.  In fact, they got worse.

She had a colonoscopy which showed nothing, but shortly after was diagnosed w/c diff.  It took almost 5 months of flagyl and vancomycin to finally get a negative.  Her symptoms seemed to get better, but she still had diarrhea and stomach pain almost constantly. One of her Gliadin levels is up but not both which I understand rules out celliac disease.

She recently developed c diff again - only this time it only took 8 weeks to get a negative.  She just had an endoscopy yesterday, and her GI dr took biopsies but won't get results for a few days.  The endoscopy showed a lot of inflammation in her small intestine and a pin-size erosion in her stomach.  She tested negative for h pylori in September.

She has been on Protonix, but it only worked for awhile.  She just started Aciphex today.

In many of these comments I have seen SOD, MRCP, and ERCP mentioned.  Since I don't know what these mean, could someone please enlighten me?  I would also like to know how they test for yeast infection syndrome.

We are getting desperate for answers.  I have a child who has been healthy her entire life until now.  She is depressed, and just plain tired of being sick all the time.  She missed her entire senior year of high school and had to be home-schooled because she couldn't function in school.  She is now at a community college but had to take three Incompletes because of missing so much class.  Luckily her instructors have been very understanding.  I have to keep her in school or we'll lose her health insurance.  If she has to quit and loses her insurance, we will never be able to afford the medical bills!

[krisg]

I forgot to say what med.s I take.  I take prevacid, elavil(20mg), and donnatal (anti-spasm).  When I have the bad attacks my doctor prescribed me mepergan (pain med. w/anti-nausau) so I don't have to run to the ER all the time.  I have finally found a family doc. who knows all about SOD, biliary pancreatitis, etc.  He has been a big help too.

[Pixie1969too]

Hi Kristin,

Please let me know more about your history - what your symptoms are and what you went through.  I am so frustrated with all this... maybe you can give me some insight!

Thank you,
Tracy (SweetSaudade)

[krisg]

I started to have gallbladder attacks 5 yrs. ago.  I then was recommended for a lap chol. because of stones.  After the surgery and for the next 2 years, I had these "attacks" of severe pain, nausau, profuse sweating, and sometimes vomiting. My regular doc. switched me to prevacid for severe acid reflux.  I was finally hospitalized because I had an attack while driving, with all the above symptoms and trouble breathing. (Kind of felt like a heart attack, although I have never had one).  My liver enzymes were in the 300's and I felt very ill for 3 days.  I then was recommended to a (specialist) to have an ERCP to check for Sphincter of Oddi Dysfunction. The dr. preformed an ERCP with biliary manometry and said my pressure in the bile duct was fine.  He concluded that I had IBS.  I didn't believe him but what choice did I have. I was started on Levsin (anti-spasm drug)and elavil(anti-depressant) in low doses is supposed to help calm the digestive tract.  I then had 2 more attacks within a week and ended in the ER.  I went back to the specialist and he told me that nothing was wrong with me and he didn't have time for this!  To say the least, that was my wake-up call.  I then decided to gather all my medical records from the lap. chol., and from all the ER room visits, blood tests, etc.  I took all my records to another dr. (in another state).  He looked at my records and listened to my story.  He then referred me to a University Hospital with another specialist.  I went this past Feb. and the specialist was doing another ERCP to check out the biliary tree.  He found that my sphincter of oddi muscle was clamed shut, I had biliary stenosis(narowing of the bile dct) and was full of mucus.  He performed a generous biliary sphincterotomy.  I finally felt relieved that something was being done.  Although I have to say I have started to have attacks again. (3 since the surgery).  I saw the specialist again for another ERCP (we thought the sphincterotomy had scarred up.  Nothing was found and the sphincterotomy site was still open.  I have had 3 MRCP's in the past 3 months that all show a 3mm stone in the bile duct.  My current situation is:  a stone shows up on the MRCP but the Gastro. specialist cannot find it when he did the ERCP.  I continue to have painful attacks in the LUQ and RUQ.  Sorry for the long post, I tried to let you know what I've been fighting for 5 years now. I think you should definetly go to a university hosp. in NY.  Hopefully someone can help you get some releif.   I do feel better knowing what is happening inside me and I have medication that helps me get through too.

[krisg]

I know EXACTLY what your wife is going through.  I am 36yr female with SOD and biliary problems.  All started after the removal of my gallbladder.  It took me almost 5 years to find a dr. willing to really listen to my symptoms and my descriptions of my attacks.  Good luck to you and your wife.  Let me know if I can be of any help.