I am sorry you're struggling. You've been dealing with active inflammation for as long as anyone it feels like. Have you spoken to your GI about
surgery? Have you consulted any surgeons? Have you had upper GI tests to rule out crohn's?
I had an ostomy temporarily and I wouldn't even change it every 2-3 days, I could go a full week. There is no smell, unless you're emptying. The smell when you empty is quite pungent, but so is going to the bathroom! You have to empty the pouch when it fills up. I would imagine most people empty it about
6x a day. The system is completely closed so you shouldn't smell anything at other times. If there's a smell it would be leaking, which isn't common once you figure out what works for you.
The least complicated surgery is the end ileo. It's one step and you're done. Managing the ileo though, may be a little more work than a jpouch, but the jpouch is definitely a more complicated procedure that takes multiple steps. Dealing with the ileo gets very easy with time. It's kind of like if you have that time of the month, you know what you need, and you make sure it's available... The jpouch, you don't need anything, but you still deal with going more often and butt burn.
The noises are with the ileo, since you can't control it, it can be outputting anytime. If you ate something gassy, the sound will come out of the stoma. it can happen anytime. You could be in a quiet theater and a noise can come out. You can muffle it by putting your hand over. People who have it for longer periods say it's less and less problematic over time, but I always had a lot of gas issues, so I don't know if it would have gone away for me...
I never thought i would end up needing surgery either. It's difficult to accept, but overall, it has improved my life a ton.
Moderator: UCCurrently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish