Posted 2/27/2014 2:36 PM (GMT -7)
I was dx'd w/UC in 1982, and had my colon removed in 1993 due to UC. Also had a jpouch constructed and am still living with that. Had an RV fistula diagnosed in 2010, and have had a seton in there since 2012.
For about 5 years prior to the fistula appearing, I had distressing, flu-like symptoms off-and-on, including headache, fevers/chills, chest discomfort, fatigue, elevated CRP. However, amazingly enough, after the fistula popped out, these symptoms all disappeared. My thought was that I was experiencing some sort of sepsis all those years, is that possible? My current doctors hypothesize Crohn's, but it was never actually seen during scopes or on the biopsies. The thought is that perhaps the original dx. of UC was incorrect, and it may have been Crohn's all along, but dang! I can't tell you how many biopsies and scopes I've had in the last 30+ years...
Anyhoo - in the last few weeks/month, however, the symptoms are returning, minus the fevers/chills. I do get "pouchitis" in my jpouch from time-to-time, and thought perhaps that's the culprit again, so am taking augmentim, but these dang headaches, fatigue, etc., aren't going away. My BMs seem as normal as they usually seem, with just a few hiccups now and then.
Anybody else ever experience similar symptoms - I'm wondering whether I am actually STILL dealing with some sort of IBD, Crohn's? Sound familiar? And/or if another fistula is forming or tunneling its way out? And who would you contact - the GI? Colo-rectal surgeon (3 hrs. away)? Internist?
I am sooooo sick of dealing with doctors and can't really seem to get answers until something - like a fistula - erupts and they can actually see it.
If anybody has any thoughts, I'd so appreciate it. Thanks.