Posted 5/29/2012 6:00 PM (GMT -6)
I had a colonoscopy on May 17, which showed rectal inflammation. The doctor told me that based on what he saw, he thought I either have Crohn's or UC. He wasn't able to reach to Terminal Ileum because I was in too much pain.
Fast forward to today, and my biopsies came back. My doctor, who was not the doctor who performed the scope, said the results were unremarkable. This is what the report said:
Rare lymphocytes involve the surface epithelium in the biopsy from the cecum, but there is insufficient surface epithelial lymphocytosis to suggest microscopic colitis. There is no significant acute inflammation or surface epithelial lymphocytosis in any of the other biopsies.
I believe that I have IBD, based on the fact that I have bloody stool, severe abdominal pain, diarrhea, anal itching, bleeding, fissures, and a skin tag, joint pain, skin rashes, severe iron deficiency, and vitamin D deficiency. I have also been on TPN (IV Nutrition) for the past 5 years because I dropped to 105 pounds due to the severity of my symptoms.
I'm at a loss about what to do going forward. I've been trying to get a diagnosis for 8 years now, and I really thought this was going to be it after the colonoscopy. I can't say that I didn't have a good doctor, because he is a world-renowned gastroenterologist. I just don't understand how the doctor who scoped me was so sure about IBD, and my doctor dismissed IBD based on the biopsies.
Is visual inflammation not enough? I know that they are looking for specific things with Crohn's on the biopsy, but I thought that was different with UC. I just can't continue on in the condition that I'm in. I need answers, and at this point I don't know where to turn. At least if I had a diagnosis, I could get treatment.
I'm sorry this is so long, but if anyone has any thoughts, ideas, or answers to my questions, I'd be really interested. Has anyone else been in this situation before being diagnosed? Thanks so much.