IBS-or I'm Basically Stumped??

[sunnyc]

I am 24 and have suffered with pain in my right upper quadrant for five years.  I've also suffered with constipation and major straining problems. I have lost weight and had extreme nausia which comes and goes.  I also have a lump in my periumbilical region.  I can't begin to explain how tired and weak I feel--ALL THE TIME.  I've had numerous tests done including an Upper GI, Abdominal Ultrasound, Numerous X-rays, Blood tests, a HIDA scan, and most recently an ERCP.  My Gastroenterologist diagnosed me with IBS and Pancreatitis.  He checked for gallstones and gallbladder disease but nothing showed.  I feel that I've tried everything to improve this IBS but still everyday I feel I've been punched in the stomach.  There is a history of gallbladder disease in my mother's family.  What I'm wondering is even though they havn't found any evidence of gallbladder problems during tests, could my gallbladder still be causing all of these problems?  My next test is a CT scan which has me concerned about cancer.  I don't know what they will do if they find normal results from the CT scan.

[Kdown11]

I had all of the symptoms you have listed. Have you had a gastric emyptying test? I have been diagnosed with Gastroparesis along with plenty of other problems, but this was the cause of the symptoms you listed.

[sunnyc]

Thank you so much for your info.  I was also thinking of having my gallbladder removed even though they can't find any evidence of gallbladder disease or stones.  Six of my mom's siblings have had their gallbladders removed which tells me that I shouldn't rule my gallbladder out as the cause despite all the negative test results.
During your ultrasounds they didn't find any signs of polypoid cholesterolosis?  I understand some of these ultrasounds can be inaccurate.  Maybe mine was too.  I will check into that.  
Did your gallbladder removal surgery allow your bowel, stomach to return to normal functioning?  Thanks again for your info.

[cjmerlin]

I have had a similiar history of stomach, bowel, and gallbladder problems.  When I had gallbladder problems I had all the labs, tests, and ultrasounds performed.  Including the HIDA scan.  All of which would come back negative.  My pain was SO severe and SO classically gallbladder, I finally got my gallbladder removed, even though they were not 100% sure it was the gallbladder.

My gallbladder was RED HOT!.  I did not have a stone which would show up on the Ultrasound.  I did not have sometype of blockage which would have effected my labs or on the HIDA.  And there was no gallbladder sludge which would have shown on the ERCP.  What I did have was a cholesterol polyp which was causing my gallbladder to spasm and cause me pain and nausea.

Once the gallbladder was removed.  I was better.

I hope this helps

[sunnyc]

When I did my reasearch, I found out that the HIDA scan covers the biliary tract(liver, gallbladder; hepatic, cystic, and common bile ducts).  The scan does take approx 2 hours or more depending on whether they can see what they need to see.  My doctor never checked for masses while I was having my HIDA.  He told me that in order for him to see masses I would have to have a CT scan.
Maybe your doctor did do some other test while you were having the HIDA scan done?
I can understand the "brain overload" you're feeling about learning all the information on this site.  It is a helpful site indeed!

[Nanny]

5Fan,

I've pasted the explanation of a HIDA scan below.  No where does it mention imaging the pancreas, only the liver, bile ducts and gallbladder.  I'm sorry that this doesn't really answer  your question.

[ Tests & Procedures]

Cholescintigraphy (HIDA Scan)

What is cholescintigraphy?

Cholescintigraphy is a test done by nuclear medicine physicians to diagnose obstruction of the bile ducts (for example, by a gallstone or a tumor), disease of the gallbladder, and bile leaks. It sometimes is referred to as a HIDA scan or a gallbladder scan.

How is cholescintigraphy done?

For cholescintigraphy, a radioactive chemical is injected intravenously into the patient. The test chemical is removed from the blood by the liver and secreted into the bile which is produced by the liver. The test chemical then disperses everywhere that the bile goes

[5fan]

I have a question.  Nanny, I'm sure that really surprises you (HA-HA).

When I had my HIDA scan done the doctor told me that it would show any masses in my pancreas.  I actually was under one "camera" for 20 minutes and then under the next for two hours.  Is this the "normal" HIDA scan or does it sound like they did more than just the HIDA scan???? - I don't understand the "show any masses in the pancreas" if a HIDA scan is used as a gallbladder test.

I may actually know the answer to this question, but just need refreshing.  My brain had been on overload lately trying to absorb and actually "learn" all the great information on this site.

Thanks for any response.

[sunnyc]

Thanks all of you so much for your insight.  

5fan-I had pancreatitis before I had the ERCP test.  My gallbladder was distended and my Amylase count was high.  The ERCP was done to check for gallstones that weren't visible by the other tests.  The doctor checked for SOD during the ERCP.  All my results were completely normal.  I'm looking forward to the CT scan.
Nanny-Are you saying the pancreatitis could be causing the hardness and pain I feel around my belly button all the time?  Can it also cause IBS?  I have been on a very strict non-fat diet for quite some time.  I've come to the conclusion that the diet hasn't improved my symptoms.  I also take a multivitamin everyday and fibre supplements along with drinking lots of water and electrolyte drinks.  
I know peppermint can be helpful to someone with IBS.  Does anyone have any other suggestions about herbal supplements or specific vitamins that can be useful to someone with pancreatitis and IBS?  Thanks again, sunnyc

[PAJ]

Your symptoms suggest infection to me, research yeast infection. yeast is the most common most misdiagnosed infection ,although slowly  the weight of evidence is forcing the condition to be acknowledged. Consider this latest info on liver ache. Note the reference to broad spectrum antibiotics! Millions are infected through taking these. Also take a look at the web site on parasites .if you need more info post. good luck.

Candidiasis of the biliary tree

. Candidiasis of the biliary tree. Candida organisms are considered to be part of normal human flora. However, in immunocompromised hosts

[Nanny]

It sounds as though they've done all the tests they need to in order to eliminate your gallbladder as the source of your problem.  The HIDA scan is really the gold standard to test gallbladder function and if those tests were okay I wouldn't think it is the cause of your problems.  The doctor has already confirmed pancreatitis, and this CT-scan of your pancreas should show what kind of problems exist, though even CT-scans can sometimes not reveal enough.  If anything shows up that your doctor feels would indicate cancer, he could do a CA19-9 tumor marker test, but you are awfully young to need to have that as a major concern.  

Pancreatitis will cause all the pain in the abdomen that you speak of.  Other symptoms include weight loss, nausea, constipation or diarrhea and extreme fatigue.  The fatigue is caused by the fact that when you have pancreatitis, the body doesn't absorb nutrients correctly, so you aren't getting the right vitamins and minerals for energy.  Many of us with chronic pancreatitis take a heavy dosage of additional vitamins, minerals and antioxidants to help supplement that which our bodies don't absorb from food.  

I trust that your doctor has discussed your need for a strict low fat diet, no more than 20-25 grams of fat daily.  If he hasn't, it would be best for you to follow a low fat diet and abstain from any alcohol.  Fats, high proteins and alcohol are all very damaging to the pancreas once the organ has been compromised.

If you have any more questions, post again.  Good luck!

Nanny

[5fan]

Your symptoms are somewhat similar to what I've had for the past three months - post gallbladder surgery.  I am not a doctor, but it is my understanding that the HIDA scan should have shown any problems with the way your gallbladder constricts, either not enough or to much.

Did you have the pancreatitis before the ERCP or was it a result of the ERCP?  

When I went to the ER because of my gallbladder I was surprised to find out that they were more concerned with my pancreas because I had pancreatitis along with gallbladder problems.  All it took for them to find out that my gallbladder was "enlarged" and that the wall was "thickened" was a set of abdominal x-rays and a sonogram.  I underwent a CT and HIDA scan because they couldn't find any stones and were trying to find out why I had pancreatitis without stones.

I am being scheduled to have an ERCP done because my pain has not subsided even after surgery.  My GI is now thinking I may have SOD (Sphincer of Oddi dysfunction).  My surgeon (different than the GI) thinks SOD also, but isn't completely convinced that I don't have pancreas pain even though my amylase and lipase levels have not elevated.

You may want to do some research on SOD and chronic pancreatitis an see if any of the symptoms relate to you.  

The best thing I did was read other posts on this board, ask questions and then follow-up with research from sources suggested.  You will be amazed at how much people on this board can help.  

People who have not been in your situation cannot relate, trust me.  I've been going through this for more than six months now, and others on this board have been going through pain for much, much, much longer, but it always helps to have someone to bounce ideas off of and who can understand the constant pain you are in.

BEST OF LUCK!!!