Posted 3/22/2023 7:44 AM (GMT 0)
Hello everyone,
I have a long history of digestive ailments dating back to around 2012 or so. At the time I was experiencing 3-5 bowel movements per day on a regular diet. Messy bowel movements but not diarrhea. about two years later I experienced a perianal abscess that was successfully eradicated through fistulotomy, but there was suspicion of Crohn's due to the associated bowel symptoms. However, more thsn 8 years, two colonoscopies, one capsule endoscopy, one MRE, multiple fecal calprotectin and blood tests later and they still cannot find anything, despite my symptoms getting worse. I now only eat chicken, potatoes, rice, melon, banana, cucumber, and a few other things. I drink a health shake to make sure I dont get vitamin deficiencies. This all keeps my symptoms under control, but if I venture away at all, I get pain below my navel and diarrhea. Recently, I stopped being able to tolerate fats as well- so no more butter or olive oil. Which makes restaurants a no go. Despite all of this, my calprotectin is consistently under 30 and both colonoscopies and capsule are normal. They DID find mild gastritis and duodenal blunting, without H. pylori or celiac (tested extensively for both). I dont get major flares often, but the last one I had 2.5 years ago I went and had a CT scan at the hospital and they found "mesenteric adenitis" without any obvious infectious cause. All of my GI docs (I have been to five) have written it off as "IBS", but IBS doesnt caude mesenteric adenitis. When I tell them that, they just shrug. I really don't know what to do. My symptoms are well controlled, but I miss going to restaurants and enjoying veggies. Fiber supplements give me pain and diarrhea, so those dont help. I tested negative for the most common pathogens, but my blood is positive for mycobacterium paratuberculosis, but in the absence of endoscopic findings they will not treat me for it. Any suggestions? Anyone with a similar history?