Posted 1/11/2018 9:59 PM (GMT 0)
Hi all,
After a year of suffering from abscesses/fistulae, I was finally diagnosed with Crohn's yesterday. Earlier in the week, I had a colonoscopy and while they didn't see anything then, biopsies confirmed Crohn's. I am looking for some support as well as advice on first steps/meds.
Background: It started last January when I had a 6x5 cm deep pelvic abscess. They drained it in the ER and it still hasn't returned. However, over the course of last year, I developed several fistulae, and the original cavity from the abscess is still open and draining at 3x2 cm (yes, a year later).
During 2017, I had SEVEN procedures done by my CR to close down the cavity and the fistulae, but none of them seemed to take care of the problem. We went through fibrin glue, additional "I&Ds" when she went in to clean up the cavity to help it close, inserted drains, and performed a LIFT. The LIFT did manage to close one fistula but I still have a few more open and branching. I've had setons in on and off since last July but have have some pretty bad pain associated with them for portions of time.
I have never had any other indications of Crohn's, not even so much as a stomach ache, so we never tested me until now. However, the thought is that going on medication may help treat the cavity so we can finally perform a mucosal advancement flap on the remaining fistulae.
The GI recommended I start on Imuran ASAP, but didn't recommend any other changes in terms of diet, lifestyle, etc.
Has anyone else had experiences with cavities that won't close or with starting on Imuran? Anything would help, I'm pretty in the dark here...