i've had my loop ileostomy for almost 8 mons now. i wanted an end ileostomy, but my surgeon said he won't do it, at least not at first, cuz there could be a chance i'd want to go back. the problem is that i have severe anismus, which means the puborectalis muscle that holds all the pelvic organs is too tight. when there's a bm it's supposed to relax in order to let the stools pass, but mine doesn't, only tightens even more and won't let anything pass.
i know ppl with loop ileos have mucous discharge from their rectum/j pouch at least once a week, some every day, and an ostomate friend of mine has 6-7/day. it's been more than 7 mons for me and it hasn't happened. after the surgery i waited about 6 weeks and nothing happened, not even a drop of mucous came out, so i did an enema. but the prob is that even enemas don't really work and i manage to have only a tiny bit out. and when i do an enema, it consumes my whole day, cuz it only makes things worse, cuz the enema's stuff stays stuck in me..
i can't expel anything from my rectum and only feels like my lower abd and rectum are about to explode. some days it's very painful, the kind of pain that wakes me up several times at night. drs don't want to remove my rectum and do an end ileostomy, cuz removing the rectum is a major surgery and involves many complications. i know that it can cause troubles with the unary tract, nerve damage that causes horrible chronic pain for life and adhesions in the pelvic area can cause many other troubles.
i just don't know what to do with this whole situation. i did an enema just couple days ago and it didn't help much. i cant do enemas so often, cuz it ruins my whole day.
my questions, how many of you with end ostomies had severe complications from removing your rectum that left you with perm damage (chronic pain caused by nerve damage, problems peeing etc)? i assume your anus is sewn shut? do you still feel a need to "go"? i mean do you still feel a significant pressure down there like there's something that you need so badly to expel? if so, then how often do you feels it? i'm just not sure, cuz if you all still feel that urge a lot of the time, then maybe it doesn't make a difference and not worth to go through a surgery like that, only to feel the same i do now
thanks for any info/advice.