So what happened? No one got a visual on that sneaky fistula, which is good? But they still can’t rule it out based on my symptoms of air and off-colored discharge. Dr. Remzi said what I already knew-that my pouch was not properly constructed. Dr. Shen told me this back in 2010 when I first went to see him, but with the help of his “bag of tricks” I was able to postpone a reconstruction for three years. I was the healthiest I’d felt in years. Although I was SURE I was having a flare when this all started up in December/January of this year, the EUA proved otherwise. My IGG4/Crohn’s was in remission, it was my pouch causing all that pain, swelling, and nausea. That really hit home for me and made me realize that I have to get this sucker repaired. That’s not to say I’m looking forward to the two surgeries required to reconstruct it. I’m not. I am not excited to devote a year of my life to surgeries again. I’m not excited to have a year for my pouch to adapt again. I am kind of weirdly excited to have an ostomy again because I can get some fab Vanilla Blush goodies. The thing I’m wrestling with the most is, do I try the J-pouch again? Do I get it fixed, have a temp loop ileo for 6 months, then have takedown? Remzi has an 85% success rate with this surgery, but let’s remember how I’ve been in the 0.6% before…Still, is it worth a shot? The other option is just to scrap the whole thing, get a permanent ostomy, and get rectum and anus removed. I have friends who have opted for this route, but both of them still have some problems. If I could just go back to an ostomy knowing it would fix all of my problems, I’d do it in a heartbeat, but as with all things, there’s no guarantee. I have no problems having an ostomy. When I had the colectemy and the end ileo when I was 22 or so, I had major doubts about proceeding with the rest of the surgeries because my quality of life was so much better. I’m happy with myself; an ostomy doesn’t change that. The only issue with going directly to the permanent ostomy and having rectum, et al removed, is that there’s no going back from that. In an effort to not “burn any bridges” my gut is telling me to try for the reconstruction. Still, I’m tired. I’ll be 30 in less than a week, and that marks 15 years with IBD. It’s been basically non-stop with disease activity/surgeries since diagnosis. Is 85% good enough to put myself through more surgeries?
Again, I don’t have MUCH of a choice. Of course, I always have choices-how to react, which surgery to do, but whether or not do so SOMETHING, isn’t really an option now that I’ve seen how poorly this sucker works. I can’t go on living on pain pills looking 5 months pregnant because I can’t poop. I want to live my life. I want to give myself a chance, and I guess 85% is pretty good.
So, what do you guys think I should do? Try for the reconstruction or say sayonara to this thing once and for all? No guarantees with either, but one option presents one less bridge to burn.