UC, Crohn's, fistulas, POO!

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.

Hi av just joined today after finding ur story, to try talk to people going through the same thing I was diagnosed with UC in 2004 now they changed to crohns year later which I already new as my gran uncle had it I think u know ur own body better than doctors a lot of the time. My consulate have not bn good to talk to at all make me feel stupid most time. They told me for years a never had a rv fistula even though a was pasting gas n stool for years though it. I have a Rv fistula they found though a Mir scan. I have just had surgery last week and it has failed all ready a can't believe it. They tryed stitching it and glueing pig skin to it the stitches came out in the bath and skin a was horrified was so distressing. Now its made my Rv fistula worse a wish never tried surgery am sore now I am totally lost what to do. I think living with a rv fistula is a night mare but don't want to get the bag either am so stressed out depressed with all. Inflexmab remicade was the only thing that healed my fistulas in past but it a serous drug to b on they wanted to take me off cause I had bn on it for over 6 years but soon am off it a while they come bk it's a nightmare. I don't think the consultants know there self most of the time when they try and diagnose u one other there so similar but they say crohn cause fistulas more that UC.

Hi Nroley - I'm a new member as of tonight. I too have a jpouch (3years) and was diagnosed today with a vaginal fistula. Just learning about them. Have you had yours for a long time? Have you been on any meds to try to heal the fistula? Will you op for surgery to repair? Thanks for any info you can pass along.