It's funny, soystud, for years I have been on this forum and at first told myself reassuringly that no way will I ever have surgery, barring high grade dysplasia or worse. Then I started to buckle, due to the sheer intractability of my condition, and said ok so maybe I will end up getting surgery but no way, hell no, will I ever wear a bag- other than a temporary one for a few months. But the more I have looked at the hard core fitness types with ostomies- blueheron is the classic example but there are others- the more I realize that all the fear about
"the bag" is mostly psychological. The operational aspects of a bag vs a jpouch are mostly identical- similar number of BMs per day (basically whenever you pee, though it seems that on average ostomates go slightly less) for example. Both can have leakage issues, but it seems in both cases those are mostly in the beginning while the jpouch and sphincters adapt in the case of the jpouch, or the ostomate adapts to customiZng the right equipment, in the case of an ostomate.
One thing ostomates will never ever have to worry about
is pouchitis. For me, with ileitis adjacent the colon, which may or may not be backwash ileitis from UC- even if it is backwash, the frequency of my pouchitis if I get a jpouch is likey to be much higher than average. I have also seen studies indicating that it correlates to a much higher likelihood of chronic pouchitis- although the metastudies are not without controversy.
Ten percent of jpouchers who "positively" , without any contrary signs, had a UC diagnosis, turn out eventually to have crohns, often uears into their jpouches. Crohns significantly increases the chance of pouch failure. Reversing a failed pouch or a pouch with chronic pouchitis (and not all chronic pouchitis reaponds to meds- plus chronic antibiotocs create serious health hazards) is fraught with risk of complications, multiple adhesions reducing function and increasing pain for a lifetime, and can result in short bowel syndrome from the lost tissue. Add to this the fact that crohns and UC may not be separate pathologies but simply representations of theoretical extremes on a spectrum- in reality most of us with IBD may be at least part crohns and UC, albeit weighted toeard one or another mostly, with some jndeterminates like me closer to the middle of the spectrum.
I just feel for my particular case the risks of a jpouch are not to my liking. If for some reason i find it too hard to adapt to a highly actuve life as an ostomate, I would consider steps 2 & 3- though if crohns happens to be found in the dissected colon, i wouldnt even be offered that option, so I want to get comfy with the idea of a perm ostomy.
Post Edited (Probiotic) : 4/6/2013 7:16:35 PM (GMT-6)