I feel you, as a fellow Chronie with multiple fistulas and with a temporary ileo (in place before gracilis repair surgery).
In the past two months, I have seen several new doctors for second and third opinions (both medical and surgical). Some place my odds of getting reconnected much lower than I ever expected and suggest I just jump to the proctectomy/colostomy.
While I realize that may be the end (no pun intended) result, I still want to know that I tried other medical (and possibly surgical) options since I am relatively young and stubborn. In fact, today my doctor and I regrouped and have decided I am going to try a new biologic and add an immunosuppressant to the game (after fun imaging/exploration to assess paths and inflammation).
Ultimately, it's your body (even if it often doesn't feel like it) and you need to do what feels right for you. I definitely recommend consulting with at least one other doctor if you can, and then making your own decision as to next steps. It's a big physical and mental decision to make that change and I strongly believe you have to be ready on both fronts!
Best of luck!
Diagnosed with Crohn's: 2002
Past Meds: Pentasa, Remicade, Cimzia, Asacol, Cipro, Flagyl, Lialda, VSL#3
Current Meds: Humira (80mg/week)
Surgeries: Fistulotomies & Seton Placements/Adjustments (September 2011, January 2013 & August 2013); Advancement Flap (December 2013); Temporary Loop Ileostomy (July 2016); Fistula Repair with Gracilis Muscle (September 2016); Fistula Repair (December 2016)
Post Edited (DCCrohns) : 9/11/2017 7:24:55 PM (GMT-6)