Long history here...... In 1995 I had major intestinal pain that got to where I couldn't eat anything without swelling up with agonizing pain after I ate. Gatroenterologist did upper endoscopy and said I had gastritis in stomach and upper small intestines. He took biopsies that returned Barrets Esophogus and lymphoid hyperplasia. I remember the photos that he showed me having a white film on very red intestinal walls. He said they did not know what the white stuff was?!?!!
After antibiotics things calmed down. Through the years I have times of extreeeeeme constipation and bouts of diarrhea. I go through periods where everytime I eat, I swell up with much discomfort to the extent that it sometimes affects my breathing and often have to run to the bathroom before I leave a restaraunt.
In 2004 and 2005 I had episodes of debilitating intestinal pain that put me in the ER. I also had MAJOR diarrhea and vomitting during the 2005 episodes.After visiting my GP and rounds of antibiotics,I went to another Gastro and did both upper and lower scopes. The DR. took ramdom biopsies again. He saw no evidence of Barrets Esophagus and said my small intestines were inflamed..."you have IBS, learn to live with it"
My response was..."No, this would be called "this is killing me bowel syndrome"...not IBS...I can't live with it."
He did a capsule endoscopy - a camera the size of a pill that takes pictures as it goes through the intestines. ..and while I was still expecting the camera to pass back out, the biopsies came back as follicilar lymphoma.
I went to MD Anderson where further testing showed no support for lymphoma other than the original biopsies. No tumors nothing in the blood or marrow, but they were still prescribing chemo and radiation. They did a small bowel follow through to see why the camera was being retained (over three weeks now). It was caught in a stricture and we were preparing for surgery to remove the camera when we had to evacuate for a hurricane and I got shingles. By the time we returned and the shingles had cleared up, I had done my own research and found that the prognosis for follicular lymphoma is no better if treated before you have a large tumor burden (I have not had any tumors to date) than if you wait and treat when you have a tumor burden. I opted to watch and wait.
The MDA DR.s said I must have some other condition concurrent with the lymphoma because lymphoma did not cause the kind of pain I had experienced and had now had several more episodes.They suggested I go to another Gastroenterologist to diagnose the problem, so I went to a highly recommended Gastroentrologist who was again baffled by my pain. One theory was that maybe the stricture was causing a blockage when my intestines got inflamed and swollen, but still no identification as to why they get inflamed. I have stopped eating corn as it was the only thread I could find to the bouts of pain and swelling. I had another episode while on a fiber shake diet. The Gasto did a Cat scan which showed a mass, but when we did the colonoscopy, nothing similar was found.....maybe it passed. I have since stopped eating insoluable fiber as it may be the cause of obstruction at the stricture. Just a theory we are going on, but I haven't had an episode since 2007 when I started excluding it.
I go for CAT scans every few months at MDA and no tumors or other supporting evidence has been found for the Lymphoma;however, biopsied have returned as lymphoma in subsequent endoscopies.
I am wondering if it may be possible that I have a reactive disease other than lymphoma as I have read studies that indicate that some reactive diseases can return histochemical results hard to distinguish from malignancy.
I have only had biopsies done when I am in the throws of a bad bout of inflamation.
I am now in an episode of swelling and inflamation but not the severe pain and vomitting. Every time I eat, my right upper abdominal intestines swell and are irritated. I will be having my regular Cat scans this week and wonder if the swelling will show on the scans.
If anyone has made it this far into my desription of condition and has any information to share on similar experiences, or any leads as to how to diagnose what's going on,I would appreciate the feedback.
It has been two weeks since I swallowed a "pill cam" and just found out today that it is still resting in my rectal area. I was looking on here to see if I could find out any info on what happens if it doesn't pass. I can relate to your story. The same symptoms you described, I have had for the past 4 years. Last year in January, I had a bowel resection due to something call Meckals Diverticulum (sp?) I've been hospitalized three times since with small bowel obstructions. I guess now it may be Crohn's disease with stictures. Anyway, just wondered if there is any info on getting the pill to pass.
It's been a year for you...hope all went well. My 9yr old son did the pill cam study in Nov. 2009. Thought the camera was out. In Jan. 2010 found out, it was stuck "somewhere." The GI doc thought it was in the colon and was held back by constipation. Almost four months and 12 bottles of mineral oil later, my son had surgery to remove the camera two days ago. What they found was a real mess in the small intestines. Seven strictures. All was removed and we are hopeful that he will now fill good for the first time in about five years. Sounds crazy, but I am thankful the camera got stuck. Don't know how long we would have gone before finding the problem in the intestines.
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