Few to no GI symptoms - still Crohn's??

[Binkly]

I was dx'd w/UC in '82, had my colon out in '93, and had a jpouch constructed. It's been going along fairly well, other than a few bouts of pouchitis and night-time incontinence which have increased over the years (apparently not unusual).

I've also been having "flare-ups" of what seems to me and my PCP to be non-GI symptoms though, such as headaches, chills/fevers, malaise, pounding heart, sore neck glands, etc. My recent pouchoscopy showed no signs of Crohn's, even above the pouch - but in '04 I had a prometheus test done that indicated I could possibly have Crohn's. My surgeon has given me this diagnosis. I've been taking lialda for about a month, and the "flare-ups" of non-GI symptoms have ended, which kinda makes me wonder if those apparently non-GI symptoms could actually be indicative of Crohn's, and might have gone away due to the lialda, which could maybe prove it's Crohn's? I don't know how much of this makes sense, but just wondering what y'all think about this. I don't mind continuing on the lialda (except my dang hair is falling out and it is rather expensive), unless of course, it could just be a coinkeedink that my symptoms have abated now.

 

[Jennifer]

Headaches are common. A lot of us here have reported having a fever or flu like symptoms before we were diagnosed (myself included). I believe most of us on here get that general "unwell" feeling especially during or right before a flare. A racing heart could mean a lot of things but could be because of all the other symptoms you were having. Sore neck glands could have simply been a virus but I get that quite often but its mainly because I get strep throat and other throat issues easily. Basically many of us do get flu like symptoms and chronic back pain from Crohn's Disease.

As far as this being proof that you have Crohns? I don't know and I think its something you should discuss with your doctor. Maybe they could do a barium swallow or an upper GI endoscopy to see what's going on in the small intestine better.