Posted 4/26/2016 3:58 PM (GMT 0)
I cant comment on all the many, happy people with jpouches, since i opted never to pursue one after step 1'of a step 3 jpouch, and kept a permanent ileo instead. I will say that in my own, personal experience, the end ileo has given me back a life roughly equivalent to life pre UC... I mean, no substantive quality of life reduction for me whatsoever vs life pre UC. No one who I dont want to know about my ileo has a clue that I have one, and it does not interfere with my full resumption of recreational and athletic activities (eg tennis, cycling, hiking, travelling a lot) that I enjoy that were severely curtailed or risky in most of my UC years.
Would I rather have never had UC at all? You bet. But an end ileo is something one can "try out" in a 3 step pouch procedure, and I was never grossed out by the thought of it. The idea of my cr*p reservoir being artificial and disposable appealed greatly to my gut instincts (pun intended) as opposed to being made of tissue that would be part of a body with a track record of attacking its own tissue when exposed to waste bacteria. Also, I had internal hemmies and so I suspect i'd have felt above normal urgency holding in anything in any jpouch, just based on my experience when pressure built, but who knows. After years of being a problematic patient/non responder for Uc therapies, I was pleasantly surprised how seamless life now is with an end ileo. Just my anecdotal experience, of course. If the end ileo had turned out to be a problem for me, I probably would have proceeded onwards but it was a done deal for me with how good life became once I got over the post surgical recovery (even right after surgery, the absence of colon pain was breathtaking)... and wow, did Uc ever rob me of too many years-- I just wish I had done it 10 years earlier but I completely understand the fears-- it's why I delayed so long. whatever surgery one pursues, seek experienced and communicative surgeons who will answer all you questions.
Best wishes and good luck.