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rachel i agree why no studies maybe if they did they might get to the why that evades us..
Most of our questions will never get studied in clinical trials, I think. Most centers just don't have enough J-pouch patients to put a study together, and those few that do are conducting as much research as they have capacity for. We kind of have an orphan condition - not as rare as some, but still uncommon, and not a large impact on public health (as constrasted with something like diabetes).
There are some newer, interesting (and promising) research methods using social media and web sites much like this one to involve patients in developing research questions, gathering research subjects, and interpreting the results. It will be interesting to see how that develops.
scott dr shen does as much research and keeps records of his patients which number about 2000 at any given time i know..and probably has as good a handle on whats what as anyone..but i would love to throw out the question of ibd patients vs. others who get a j pouch and why the higher incident of pouchitis..
unfortunately he is so busy and does a great job in getting back if you are having issues but the only time to ask him this is when one visits.. i go only once a year...but i plan on asking dr.melmed my la doctor what he thinks..
