I have a neuromuscular disorder that causes me to go to the bathroom 15-25 times a day. The sacral nerves in my rectum don't stimulate the muscles to hold back waste properly, so I actually have the rare problem that I really need to go 100% of the time. I have this constant horrible pressure and even though I'm very clean and fit, I always smell bad. In a month, I'm getting a sigmoid colostomy which will leave the rectum/sphincter intact. So I will still need to pass mucus. Since I don't hold back waste normally, I'm extremely worried that I will still have the constant need to go and still be isolated/always on the toilet. I discussed this with the surgeon and he said that it sounds like a strong possibility. He said that the average person may still pass mucus 1-2 times a day. The problem is that's how often the average person passes waste, while I go 10-20 times as often and have pressure/smell 100% of the time. So I'm worried about being in the same position due to mucus.
The surgeon still wants to leave the rectum intact to make the ostomy reversible and make the surgery much less invasive. I agree that this should be plan A, but I'm really worried that after all this insanity I'll still be crippled with sickness. And he doesn't want to consider the rectum removal as plan B. He's an excellent surgeon, so I don't want to go elsewhere, but I'm going out of my mind over this.
Does anyone with a colostomy/sphincter still have problems with mucus? How often do you excrete? Would a twice-daily enema make it feasible? Is there a bad smell? Would you rather just lose your rectum? Alternatively, would anyone with no sphincter like to comment on this issue?
Sorry to be so explicit, and very sorry if I sound negative about all this. I really do respect the people who get ostomies. It's just that I'm going out of my mind. 5 years of intense illness, pointless testing, daily health food/exercise, a useless neurostimulator, now major surgery, and I may still smell like waste/have pressure 100% of the time. I'm barely hanging on anymore.
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