I don't even know where to begin with this one. This has become the most debilitating part of living with a J-Pouch for me, bar none-- just the sheer amount of time I now spend in the bathroom. I often have a lot of difficulty emptying the pouch. This mixed with the occasional tenesmus, leads most of my bowel movements to last around 4-6 hours each on average.
I guess I'm considered lucky in that I usually only go to the bathroom 2-3 times a day. But with these 4-6 hour sessions, that usually ends up being 80% of my waking day. Sometimes this is tenesmus messing with me. But the majority of the time I'm ultimately having difficulty emptying the pouch in a normal timeframe. I just keep going. As I sit there, every, say 15 minutes there's another wave ready to push out. If I go for the alternative, being just calling it quits and getting off the toilet anyway, as soon as I'm done cleaning up, I have to run right back to the toilet. So instead of doing that over and over and over-cleaning my now extra sensitive skin raw, I just have to sit there and wait it out.
Sometimes I get lucky and it only takes an hour or two. But even just wiping itself takes at least half an hour, sometimes over an hour. That never used to be the case when I had a colon (even a diseased one) and I don't understand why it is now, other than the simple consistency / pH difference of the stool and trying to handle it in a way that lessens the pain of my searing butt burn in the process. So even when that luck strikes, it's still a several hour process. And that only happens maybe once or twice a week. There's been many days over the couple years I've had this thing condemn me to single sessions in the bathroom for 18, 24, once even 36 hours. Those are the days I often become so sleep deprived I start passing out, falling off the toilet, banging my head into the walls, etc, still with no end in sight.
When I see a non-IBD friend walk out of the bathroom in literally 2, maybe 5 minutes tops, I honestly get so resentful. But even the now "normal" days mostly consist of me literally waking up, going to the bathroom for 16 hours, eating the quickest meal I can, and immediately going back to bed. Or taking those few free hours to do some of the work that's piled up instead of eat or sleep. Needless to say, this has not only taken over my life, it's completely ruining my career, and my life.
I haven't talked to my surgeon about this yet, but based on all my scopes he says my pouch looks perfect. I have talked my GI about all this and he has no idea why it's happening or what to do. I'm at least taking plenty of Imodium to slow things down. And consistency-wise, my stool is right where the doctors want it to be for a j-poucher. Though I also have a multitude of other bizarre complications yet to be figured out that perhaps are linked in some weird way. My frame of reference is probably skewed, because I only had UC for a year, that was always moderate, before it suddenly became fulfillment for a couple months and they ended up taking my colon. So I really only went through a very short period of true colitis hell, and it's seriously questionable that that was actually necessary in the first place. But man, if this is how life is going to be, I really don't think it's worth it.
I'm sorry for the inordinately long sob story. But regardless, if anyone has any experience or helpful advice for all this, I would very sincerely appreciate it.