To branch off from the thread on surgery curing UC, I have been spending a fair amount of time on the jpouch.org forum to learn and mentally prepare myself for what now seems inevitable, because I am chronically flaring and pred-dependent and fed up with my UC's effetc on my quality of life. But I have noticed a number of people on that forum have their colons removed and get a jpouch, only to later be dx'd with CD of the pouch some years later (sometimes 10 years later).
Now, I realize that diagnosis remains a fuzzy science for many but this mis-diagnosis/re-diagnosis thing worries me. My own UC has been considered indeterminite (i.e. possibly crohns colitis= CD restricted to the colon) by more than one GI, but on balance (including the last two scopes) they lean heavily towards it being UC. If (I guess when) I go for surgery I would prefer to try for a jpouch and only if I have bad function without improvement, go for the permanent bag. But I have several questions:
1. if there is dysplasia- certainly more than low grade (and possibly even with low-grade), it doesn't really matter if it's truly UC or CD, the colon still has to come out, right?
2. but if it "really" is CD, wouldn't it be better to skip trying to have a jpouch and go straight to a permanent ileo? (Because, presumably, the jpouch would probably be doomed to have CD later down the road.)
3. if it is "probably" UC (but with a slight amlunt of doubt) is it then worth gambling going for the jpouch and just dealing with it down the road if it turns out it was CD all along?
4. before making surgery decisions, is it not wise to try hard to further narrow down the diagnosis - eg using those PANCA tests and/or using a capsule endoscopy to check the small bowell or something (no inflammation past the ileo-cecal valve visible in colonoscopies, and no extra-intestinal manifestations of disease), even though the tests are not that definitive?
Anyway, thanks anyone for reading this far and for any thoughts.
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
10 20 mg pred, 100 mg Imuran
Probiotics (mainly Primal Defense)
Turmeric/circumin, various vitamins/minerals,
Low-carb version of Specific Carb Diet