After seeing Dr. Remzi & Dr. Shen & completing a CT, gastrograffin, & a pouchoscopy it was decided the best thing to do would be to wait. Neither dr. is convinced there isn't a diagnosis of Crohns even tho the pouchoscopy showed no indication of it. Dr. Remzi believes since I went 6 years since Dr. Fazio (who he deemed "the master") did the last fistula repair w/ no problems & now 3 fistulas are there that Crohns is the culprit. He says to repair the fistulas would "not be a walk in the park" & there is a 20% chance I'd lose the pouch if he did surgery & b/c the fistulas are causing no major problems or keeping me from living my daily life, then we should wait. He says it's certainly not an emergency to fix this & I can always opt to do surgery later if I decide I don't want to deal with it anymore. He is also going to discuss w/ Dr. Shen putting me on meds for Crohns to see if that helps. If it does then I guess it's Crohns if not, then I'll just stop the meds. If I decide to do surgery later Dr. Remzi says I would most likely be looking at a 3 step surgery w/ possibly 9 months of temp iliostomy - that just scares me too much! Dr. Remzi also said he would give this same advice to his family member facing these same issues. So, for now no surgery - I truly hope I made the right decision!
Original Post