Having had an end ileo, and now being a j-poucher, I second NNSG's comments. There's nothing wrong with wanting an ileostomy rather than a j-pouch. I was really happy with my ileo, and if I ever had to go back to it I would be fine. But I definitely prefer having a j-pouch.
With the ileo, I didn't like the feeling or look of the bag being too full. It gets heavy and isn't easy to hide when it fills up. So I used to empty mine about
10 times a day. Those bathroom trips were quick and weren't a major inconvenience, and they weren't *essential* like in my UC days. If I needed to I could easily put it off for long periods, but it did mean having a pretty full bag stuck to my side. Compared to UC it was a minor inconvenience though. Once I was in a good routine with daily bag changes, and found a product combo I liked (particular bags, barrier rings, barrier spray, removal spray, skin wipes etc) it took about
10-15 minutes every morning (with my wife's help to get the barrier ring on) to change my bag. Compared to UC it was a huge liberation.
With the j-pouch, even when it's really full it's not uncomfortable in the way that wearing a full bag is. I now visit the bathroom 4 times a day, rather than 10. In the morning when I woke up with the ileo, I needed to get to the bathroom right away as the bag was always fully inflated (and I had a couple of accidents while sleeping, where the bag filled too much and came off - not the nicest way to be woken up!). When I wake up with the j-pouch, I am in no particular rush to empty it. My morning routine is pretty non-eventful and easy now. I sit on the toilet, empty, and get on with my day.
I was always thirsty (and craved salt) when I had an ileo, but don't have this with my j-pouch. I think that's probably because my ileal effluent (the liquid stool that would otherwise have firmed up in your colon) left my body right away into the stoma bag. Now, that liquid stool goes into my j-pouch, sits there for much longer, firms up a bit, and (I'm guessing) enough water gets absorbed for me to feel well hydrated.
Comparing a j-pouch bowel movement to diarrhea isn't really accurate. Diarrhea with a colon means something is wrong - you've got a virus, bacterial infection, a parasite, active IBD, etc. Even a watery j-pouch movement isn't really comparable to diarrhea: you are healthy, you don't have any urgency. Not all j-pouchers have very liquid stools. I've had my j-pouch for about
11 months now, and (especially if I take psyllium husk supplements) my stools are usually soft but otherwise quite well formed.
If you do end up needing surgery, you'll need to decide in advance whether you want your ileostomy to be permanent (in which case they will remove your rectum in its entirety, and there's no possibility of j-pouch surgery in the future). I thought I would like a j-pouch going into my first surgery, but was also
open to trying out life with a stoma. I had a sub-total colectomy (removal of large intestine but leaving a large enough rectal stump to keep the j-pouch option
open). Had I chosen to make the stoma permanent, I would have needed another surgery to remove the rectal stump (because of the cancer risk there) anyway.
If you haven't done this yet, it might be a good idea for you to meet some ostomates and j-pouchers in person. Talk to them about
their experiences and lives post-UC. Before I did that, I leaned towards getting a stoma (for the same kind of reasons you mentioned): I was afraid a j-pouch would be like UC-lite, and thought the stoma seemed like a more definite way to get rid of urgency. I met a couple of j-pouchers for coffee, had a very
open chat about
the surgeries, their daily lives now (and the specifics of what bowel movements are like with a j-pouch). Meeting them really changed my perspective.
Post Edited (Albannach) : 8/24/2017 4:28:32 AM (GMT-6)