Thanks AIMC. And you're so right about asking questions. There are no questions too small to feel embarrassed to ask about if it's something that is causing one any doubt or concern.
Burd, welcome to the group! I hope you and your doctors can come up with a good plan and date if you go for removal. There really wasn't one thing that pushed me to pull the trigger on removal, I'd had problems with the pouch almost from the get-go, even though I had good periods of time with it as well. Eventually, too many fistulas, abscesses, EUAs, cuffitis, drainage/leakage, etc. My surgeon finally said about a year ago that the pouch "had to go" due to the latest abscess being so huge with a fistula that wrapped around the pouch.
TF, I'm sorry you're having these problems. I would point out that if you suffered with your ostomy due to it being a loop ostomy, the end ostomy, which is given when a pouch removed, is easier to care for. I certainly wouldn't try to influence anyone as to whether to keep or remove a pouch, but I personally wish I had had it taken care of sooner. An ileostomy is by no means easy to get used to, it does take time to come to terms with it, but in my case, it's been great compared to all the issues I had with the pouch.
And for sure, TE Marie, there is a lot of information out here from others who have gone through this process - I scoured it all before and after my surgery, and got so much helpful information from you all. Your posts were especially helpful, TEM. PS the ostomy wraps are great, too!
I do have a few suggestions for those who eventually do decide to do a removal. Talk extensively with your surgeon on what to expect, both in the hospital and afterwards. Since we are all so different, it's not easy for the docs to tell us specifically what will happen, but they can give you an idea of what to expect, and when to contact them. Things happened at home that I didn't expect, didn't know if they were normal, didn't know if they'd lead to something worse, etc., and that was really difficult to deal with. 2) try to build yourself up before the surgery - walk, do some aerobic exercise, up your protein, etc. 3) and your doc and/or do some research on Juven - it's a "therapeutic nutrition powder for wound healing", which I learned about and used after my incision opened up. It's available on-line or at Walgreens. This stuff works! Also be prepared to up your protein intake after surgery, I try to increase my protein with meals, and supplement with a protein drink during the day; 4) ask about how your bottom will be closed up - stitches inside? An opening for drainage? I had these and it was fairly "comfortable". I understand some have staples? Can't imagine that ... 5) Have support available to you as needed. It's difficult, and not advised, to be bending over for the first few weeks for even simple things like pulling on socks. 6) And always remember this: