I wouldn’t go back to an ileostomy if you paid me. I hated it. In fairness though, I don’t know if ileostomy products have gotten better from when I used them 25+ yrs ago. At the time I had my ileostomy, I worked in the professional world and hated the uncontrollable gas, smell, and bloating of the bag. I had many experiences with the seal leaking around the bag as well. I was meticulous in putting the bag on, my husband would even help me to make sure it was centered, dried, etc. I wouldn’t eat 6 hours before a change out. I wasn’t comfortable having sex with the bag either and yes, I bought bag covers, but it didn’t make me feel any better. I didn’t do very well psychologically or physically when I had an ileostomy.
Although my J-Pouch is not perfect, I’m one of those who was diagnosed with UC and after surgery path tests showed Crohns. So yes, I deal with pouchitis, but as time has gone on, it is less and less. And yes, I have fistulas, 3 of them. But I find them easier to deal with than the bag. I feel much better physically and mentally with the J-Pouch.
I do keep myself in shape with exercise and I eat everything in moderation - I do not have any food issues. I very rarely take any meds and if I do need something, an Aleve calms everything for me. I take some vitamins, but never probiotics, they mess up my system bad.
The one thing I can say from being on this board is, every body is different. This disease is so unpredictable and the complications from it are different for everyone. I take one day at a time and thank God for every day I’m here, even on my bad days.