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.

[Woli]

Hello,
I am so glad there is something like this out there. I sometimes feel like I am going crazy. I started about 2 years ago having pain in my ULQ under my ribs feels like a knot, sometimes very severe. I like many have been to the doctors repeatedly & test all come back normal. About six weeks ago I started having nausea & pain in my stomach; it got so bad I went to the ER. They said I have acid reflux & sent me home with pepsid. 3 days later I went back thinking I was having a heart attack; they changed my medicine to protonix to see if that would help it did not. I am losing weight because I get sick when I eat, but on the down side when I don't eat my pain is worse. I have had an ultra sound, CT scan, blood work & everything is normal. I have IBS & I think sometimes think when doctors cannot find something they always revert to that. I have has IBS for years & I have never felt like this. I also get burning pains around my belly button, I have a lot of mucus in my stool & I get spasms in my lower belly (fells like a vibrating sensation). If anyone has any incite please let me know. I go for a hida scan tomorrow.

[Woli]

Hello,
I am so glad there is something like this out there. I sometimes feel like I am going crazy. I started about 2 years ago having pain in my ULQ under my ribs feels like a knot, sometimes very severe. I like many have been to the doctors repeatedly & test all come back normal. About six weeks ago I started having nausea & pain in my stomach; it got so bad I went to the ER. They said I have acid reflux & sent me home with pepsid. 3 days later I went back thinking I was having a heart attack; they changed my medicine to protonix to see if that would help it did not. I am losing weight because I get sick when I eat, but on the down side when I don't eat my pain is worse. I have had an ultra sound, CT scan, blood work & everything is normal. I have IBS & I think sometimes think when doctors cannot find something they always revert to that. I have has IBS for years & I have never felt like this. I also get burning pains around my belly button, I have a lot of mucus in my stool & I get spasms in my lower belly (fells like a vibrating sensation). If anyone has any incite please let me know. I go for a hida scan tomorrow.

[Woli]

Hello,
I am 36 years old. I am so glad there is something like this out there. I sometimes feel like I am going crazy. I started about 2 years ago having pain in my ULQ under my ribs feels like a knot, sometimes very severe. I like many have been to the doctors repeatedly & test all come back normal. About six weeks ago I started having nausea & pain in my stomach; it got so bad I went to the ER. They said I have acid reflux & sent me home with pepsid. 3 days later I went back thinking I was having a heart attack; they changed my medicine to protonix to see if that would help it did not. I am losing weight because I get sick when I eat, but on the down side when I don't eat my pain is worse. I have had an ultra sound, CT scan, blood work & everything is normal. I have IBS & I think sometimes think when doctors cannot find something they always revert to that. I have has IBS for years & I have never felt like this. I also get burning pains around my belly button, I have a lot of mucus in my stool & I get spasms in my lower belly (fells like a vibrating sensation). If anyone has any incite please let me know. I go for a hida scan tomorrow.

[Woli]

Hello,
I am so glad there is something like this out there. I sometimes feel like I am going crazy. I started about 2 years ago having pain in my ULQ under my ribs feels like a knot, sometimes very severe. I like many have been to the doctors repeatedly & test all come back normal. About six weeks ago I started having nausea & pain in my stomach; it got so bad I went to the ER. They said I have acid reflux & sent me home with pepsid. 3 days later I went back thinking I was having a heart attack; they changed my medicine to protonix to see if that would help it did not. I am losing weight because I get sick when I eat, but on the down side when I don't eat my pain is worse. I have had an ultra sound, CT scan, blood work & everything is normal. I have IBS & I think sometimes think when doctors cannot find something they always revert to that. I have has IBS for years & I have never felt like this. I also get burning pains around my belly button, I have a lot of mucus in my stool & I get spasms in my lower belly (fells like a vibrating sensation). If anyone has any incite please let me know. I go for a hida scan tomorrow.

[krisg]

Hi, yes I'm still here.  Thanks for the comment.  I have been researching this SOD, etc for 4 years now and have been suffering for 6 yrs.  I have heard that Duke is an excellent hospital.  I hope you found a good doctor too.  The ERCP is not painful, i.e. you are basically out of it and don't remember a thing. The pancreatitis is painful but the pain is about the same as the SOD (very painful).  Of course if someone comes down with post-procedure pancreatitis, they give lots of pain meds to make you very comforable.  From my last ERCP (3-04), I found out that the pressure in my pancreatic duct was 200 (normal reading is 40 or below).  I also have celiac disease and have been on a gluten-free diet.  My pain has been better but I am still getting painful days when I have to take pain meds.  Since it has only been 2 months since the ERCP, I am going to wait about 3-4 months to see how I feel,  then I will check back with my doc and see what he thinks.  I also have read on the web that celiac disease, pancreatic disease and SOD are all interconnected.  VERY INTERESTING READING.  Hope you are feeling well.
Kris

[Greenville]

Kristin, you have been a wealth of knowledge and experience to all of us RUQ pain sufferers.  I see that you haven't posted in over a month.  I hope that you are doing better.  I have had RUQ for 3 month and just got back from Duke University.  They are leaning towards SOD and I think the next step in ERCP.  They are trying to hold off due to the risk of pancreatitis.  Was that really painful?  I hope that you have found some answers.  Please let us know!

[krisg]

just returned from Indiana University Hospital.  ERCP was preformed, and biliary sphincterotomy and pancreatic sphincter was cut (high pressure).  I got pancreatitis and was in the hospital for a few days.  I was told that I have villious atrophy in the small intestines and that it looks like I have celiac disease.  Who new??  I have never had any problems with eating regular wheat products, only with dairy products. I have been latose intolerant since childhood.  anyway, my RUQ and LUQ pain has returned only after 1 1/2 weeks after the surgery.  I am starting to feel like this is how it is going to be for life.
I am still waiting for results from biopsies taken during the ERCP.  Hope for the best !!

[Outrajus]

Sorry for what you all are going thru.  Here's my story and maybe it could help someone or someone could give me more additional information. I am 37 and have had chronic diahria with rectal spasms and lower back pain, spams in my stomach which turned out to be interstitial cystitis for the past 8 1/2 years. My complications started with the delivery of my son. I have constant diahria and can't control bowel movements. I have had numerous test including a negative colonoscopy but i did have six polyps. I have had several anal sphincter surgerys and Chroans was ruled out. My doctor has in my medical records that I have IBS but has never discussed this with me. I only just found out about this being in my records. I was at a point where my doctors didn't consider me a canidate for surgery anymore. I went to Tulane University in Lousiana and was told that there wasn't anything that could be done. My local doctor heard about a new surgery and it is limited to only a few states in the US i think. I had an artificial bowel sphincter implant, although this is the last resort for bowel incontinence ....you might could do some research on this. I have had the implant now for going on 4 months now and mine was just activated two weeks ago because of some complications for which i seem to be the exception. As of my surgery i was their 11th patient. I know this would be only as a last resort ......but so far it has made a tremendous difference in my ability to perform normal duties. I have rectal spasms really bad and the doctor said that the Artificial Bowel Sphincter surgery wouldn't help my spasms, which it hasn't maybe even made it alittle worse....but i can at least get up walk to the bathroom without running and defecating on myself. I was diagnosed with Interstitial Cystitis also, I was having really bad spasms and cramping my stomach and they tested for bladder infections which came up positive and never would clear up...I know have to watch what i eat but my doctor goes in and burns the lining out of my bladder every so often which makes the spasms stop at least for awhile.  I control them with meds...Hope this helps someone.. Good Luck to you.

[ManicPanic]

Hello I have been reading some of the forums.I have had simialiar problems for over a year now.I had my my gallbladder removed in January.I have had sever nausua,diaarhea,fatigue,itching.Abdominal pain in the upper region of ribs.Thhe drs have done many ultrasounds,I have had bloodwork.One day they tell me I have a fatty liver,next time an enlarged spleen and liver.Now they tell me my liver function test is high.They have me on nausua meds and mild painkillers.I am being reffered to  a specialist.Is there any specific questions i should ask?? They ddiscussed going down my stomach with the scope and looking at the liver and the intestines...I am 30 years old..am I too young to have cancer??Should this even be a concern to me??? I am at aloss as where to turn.Just getting the same treatment each time I go to a dr.Benn to 2 already. I get sick at least 3 times a month anywhere from 3-6 days ata time can't even hold down water.I have various health problems won't go into detail about them would take a lifetime..lol  Can someone pplease tell me what to expect or give me an opinion or suggestion I would greatly appeciate any and all comments and help I can get..

[ManicPanic]

Hello I have been reading some of the forums.I have had simialiar problems for over a year now.I had my my gallbladder removed in January.I have had sever nausua,diaarhea,fatigue,itching.Abdominal pain in the upper region of ribs.Thhe drs have done many ultrasounds,I have had bloodwork.One day they tell me I have a fatty liver,next time an enlarged spleen and liver.Now they tell me my liver function test is high.They have me on nausua meds and mild painkillers.I am being reffered to  a specialist.Is there any specific questions i should ask?? They ddiscussed going down my stomach with the scope and looking at the liver and the intestines...I am 30 years old..am I too young to have cancer??Should this even be a concern to me??? I am at aloss as where to turn.Just getting the same treatment each time I go to a dr.Benn to 2 already. I get sick at least 3 times a month anywhere from 3-6 days ata time can't even hold down water.I have various health problems won't go into detail about them would take a lifetime..lol  Can someone pplease tell me what to expect or give me an opinion or suggestion I would greatly appeciate any and all comments and help I can get..

[krisg]

That's why I post on this board.....to constantly remind myself that I am not alone.   I'm a 36 yr old female.  Seems that alot of us have ALOT in common since our gallbladder surgeries...

[MTV]

Wow...in almost every post that I have read on this subject, I see myself.  Am 32 yrs old, non-smoker, exercise, part vegan.  Had gallbladder removed in April 2002 and have been miserable since.  I am sorry that we are all suffering, but it is good to know that I am not alone. I too, am going through a battery of tests, to no avail.  Can't get in to see my gastro until March, but I am definately bringing a copy of this to him.  Thanks for all the info!

Melinda

[krisg]

Hi, I had a biliary sphincterotomy done in Feb 03.  I still have attacks of pain but they are milder in nature.  Don't get me wrong, they are still quite painful.  I go through a certain process everytime I come down with pain, approx. every 6 weeks:  
1.  have attack
2.  get bloodowrk done
3.  have a MRCP done.

I have finally found a good relationship with a local primary physician.  This is the course of action he has recommended.  He also prescribed me pain med.s to take when I have attacks.  I only need to take them for approx. 2 days, then I feel better.  So far, my bloodwork shows normal but the MRCP shows a small stone in the bile duct.  Since the stone is smaller than my bile duct and since I have already had a sphincterotomy done, I am told (by a local gastro. dr) that I live with the attacks as long as my bloodwork is normal.  Apparently dr.'s will not do anything about the stones unless bloodwork shows elevated enzymes, meaning that the stones are blocking the flow of bile.  Then another ERCP would be in order.   It was very hard for me to accept this course of action at first.  My first response was why can't they take out the stone??  Well, they have tried, but by the time they schedule me for an ERCP, the stone seems to have passed.  I keep producing small stones in the bile duct and they cause intermittent pain for a couple of weeks, then pass.  So this is what I live with and hope that maybe some of my information may be of help to you.

[athompson]

Wow...I am glad to know that I am not crazy. I am a 38 YO female that has been suffering the same RUQ pain for 1 year.  I have had every test know to man, a TAH and my gallbladder removed.  I went to a gastro for a second opinion after my 1st gastro told me to "live with the pain."  Went to the doctor, my liver profile was elevated so he performed an ERCP with SOD MAN.  My SOD pressure was 120 and a sphincterotomy was performed and a temp stint was put in.  I had a wierd pain in my right shoulder for 4 days and now my RUQ pain has returned.  Has anyone had a sphincteotomy that didn't work?  If you did, what was your next step?  

Thanks so much for your help!  I know how frustrating this can be.

[krisg]

My first ERCP was preformed by a so-called specialist.  According to his report, he had to try 5-6 times to access my bile duct. He neglected to tell me this when I woke from the procedure.  After gathering my medical records ( extremely important), and much further research, I discovered that dr.'s are not supposed to make repeated attempts to get through the sphincter muscle due to further damage being caused.  My 2nd ERCP (2003) was done by a dr. at another University Hospital and he tried to access the bile duct with the standard equipment, then when he could not, he performed a precut papillotomy.  A small cut in the sphincter muscle to allow access to perform the ERCP.  The dr. then performed a generous biliary sphincterotomy (a larger cut).  I did have relief for about 5-6 months.  I now have problems with small stones forming in the bile duct and getting temporarily caught around the bottom of the bile duct, giving me attacks of pain.  The stones are smaller than the bile duct itself so they pass after a couple of weeks.  My point is, that one dr.s  opinion is not necessarily the best.  My first dr. who did the ERCP told me nothing was wrong and to deal with it, i.e. diagnoses IBS.  My 2nd dr. found that the sphincter was scarred closed and the bile duct was full of mucous.  Good Luck and make sure you go to a dr. who performs many of these per week.  Also gather all your medical records and go over them yourself.  Don't know where you are located, but University of Indiana Hospital has a whole ERCP building and that's what they do all day and all week long.(my next destination)

[ricksca]

As a 25 year sufferer of URQ pain, all these stories sound familiar. I finally gave up and allowed my gallbladder to be removed last year. Of course, there was no problem found with it upon removal and the pain has gotten worse. Most likely that SOD is (and was) the cause of my pain. I have had two ERCP's that were inconclusive because the doc couldn't get into the sphincter. Only choice now is to proceed with Sphincterotomy. My question is, are there any people out there who have experienced lasting relief from this proceedure? Or lasting damage? Rick

[krisg]

glad I could help...........

[dlogan]

Thank you so much for answering my questions.  I've researched further and have very high hopes that we may have some answers for my daughter's problems.  She has an appt at Johns Hopkins in March, so hopefully we'll get her straightened out.

[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.