Complications- Abscess and Fistula
Hi
I know there is advice online but from experience the forums and peoples lived experiences and tips have never let me down!
I recently underwent the drainage of two abscesses, one which caused a fistula, a few days ago. I’m just wanting to know anything you found helpful in your recovery? Things to avoid? Just your overall experience.
Just for context, diagnosed with UC when I was 15 never experienced any EIM like this before. Had an ileo-anal pouch when I was 21 however unfortunately they believe I’m experiencing pouch failure (had pouch 13 years but have severe pouchitis) and that is one of the complications. So I’m conscious this may not be my last/only abscess surgery.
Really appreciate sharing of any tips, challenges etc from those who have gone through this disease.
Thanks in advance
Hi
, I'm so glad you've reached out. I hope some of our community members here can share their personal experience and tips recovery for abscess drainage and fistulas. In the meantime, I'm linking this article from one of our health leaders, https://inflammatoryboweldisease.net/living/life-hacks-living-with-fistula. She wrote about her tips and hacks for living with a fistula that you might be interested in reading.
I see you originally posted almost a week ago and just am wondering how you're managing currently? -- Warmly, Christine (Team Member)Fistulas are a nasty problem. With my Crohn's, I've had fistulas about everywhere you can imagine-- in my rectum (Along with a super painful abscess) before first surgery, around my first and second stomas after my colosotomy which was later revised to an ileostomy, into my bladder, from one loop of my gut to another, and finally, through the wall of my abdomen. All but the last had to be corrected with surgery. The last one showed up about the same time that Remicaid came available, when my drs. said I could have only three doses of it for the rest my life (that advice has since changed). After 3 doses, the fistula through the wall of my abdomen closed completely and has stayed that way ever since (23 years or so). And, happily, there's evidence of any others.
Oops, typo in the last like of my previous comment: "...there's NO evidence of any others..."
Hi
. No worries - we know that not being able to go back and edit post when you notice a typo can be annoying. Glad the Remicade helped. Mind if I ask why you were originally told there would be a three dose limit? Best, Richard (Team Member)
That was the standard advice when Remicaid first came out. Don't know for sure who set that policy, but because it hadn't had enough testing to make sure long term use was safe, that's it got started. It didn't take long before that policy changed.
