ive only ever had 2 fistulas in my 13 years of crohn's, the first recto-vag fistula developed during a really bad flare up, it was agony and the last straw for my consultant and I had surgery a month later to remove my colon, rectum etc. leaving me with a permanent ileostomy in 2011, 6 months after surgery a hole appeared at the base of the stoma I thought it was perhaps a stitching problem but a scope test revealed it was a fistula and that my crohns was active, however I was completely symptomless and feeling the healthiest ive felt in years. was just wondering if this has happened to anyone else, is a fistula a just a typical symptom of crohn's? or do they only occur when the crohn's is at its worst? currently on humira to try and close it up, been on it 5 months, think it might be getting smaller but its still hard to tell at this stage.
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Has anyone developed a fistula without any crohn's symptoms
- Thread starter littlefreebird
- Start date
I had no warning on my fistula. In retrospect, I believe it was caused by mycoplasma pneumonia as I had pneumonia for a few months previous. Can't be sure, as they would not test for it but it has been an ongoing problem and when I self treat for it my symptoms improve pretty dramatically.
Dan
Dan
theOcean
Moderator
- Location
- Toronto, ON, Canada
My GI refers to my case as fistulizing Crohn's. I've only developed one, though. It happened after I was in flare-up for a full year, and the same thing happened to my father.
Also, good luck on Humira! I've been on it since November, and I'm getting my seton out soon so it can hopefully close.
Also, good luck on Humira! I've been on it since November, and I'm getting my seton out soon so it can hopefully close.
My crohns develops fistulas although I have never had an external one, just internal. It took about 26 years from diagnosis for me to have any issues. I had to have surgery to remove some intestine and colon as the fistulas were all over the place. My is referred to as fistulizing crohns as well.
nogutsnoglory
Moderator
I know someone who developed a rectal fistula who doesn't have crohn's but has an ileostomy. So it's not crohn's exclusive but generally is due to crohn's and can manifest without typical and more common crohn's issues.