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Part of a new club - CD and Bladder Fistula + MS

Tue, February 27, 2018 1:47 PM

Hello all!

I was recently diagnosed with Crohn's Disease since experiencing symptoms in early January of what I now know is a bladder fistula. It was, and has been, awful! It seems almost like a UTI from hell that just won't go away. It's painful to urinate, usually at the end of the stream instead of the beginning, and I have debris from my urine as well as blood. Total nightmare, because nothing helps the pain besides no-kidding painkillers that I do not want to get hooked on.

My question is - does anyone else have this bladder fistula? I had to have 2 (eek) colonoscopies a week apart because my first colon prep was unsuccessful, and it's confirmed that I have Crohn's inflammation at the end of my small intestines. That's where the fistula track is located, through a fluid pocket, to the bladder dome. Have had cystoscopy (would not wish on anyone) and confirmed bladder cancer is not the case, but there is heavy inflammation. I tapered off a 40 mg dose of Prednisone from January to mid-February, am now on Entocort, and meeting with a colorectal surgeon next week as it seems the best action to take is a partial resection.

Anyone who has had a bowel resection - how long is the recovery? I'm trying to get a new job in the middle of this, and am terrified it will screw up my prospects if I have to be out of commission for several weeks. But I can't just live with a bladder fistula, as it could go very bad very quickly. What's so frustrating to me is I don't have any of the "classic" signs of Crohn's and it wasn't anywhere on my radar - I do, however, have Multiple Sclerosis (MS) which limits my long-term Crohn's treatment options.

What a mess. Glad to be part of the group, though!
AmpAUD

AmpAUD
Joined Feb 27, 2018

Tue, February 27, 2018 3:04 PM

Reply posted for AmpAUD.

I don’t know how relevant my situation is to yours. I had colitis and eventually had to have my colon removed (complete proctocollectomy). Had a long recovery time, a month or two to feel much better, a year till I felt completely better. I developed multiple fistulas in my left hip that have and continue to cause me a lot of problems. I’ve had drains installed to deal with some of the problems. I can’t image how difficult a bladder fistula would be. As I am writing this I am sitting in a hospital room getting an Entivio infusion for Crohn’s disease, which came on after the colitis was dealt with. These diseases affect everyone differently, I hope you find relief with yours.

charbs
Joined Oct 31, 2016

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