Living with an Ileostomy: Unexplained Symptoms and Experiences

I've had my ileostomy for about 15 years due to two perforations in my small colon. My surgeon was great but never explained anything to me. He left it up to my nurse, who only said I might get urges, and I didn't have any support until I found you. Three months ago, I had terrible urges for 4 days and could feel stool and gas wanting to come out of my rectum. On the 5th day, with bearing down, I passed a medium amount of stool. After that, no urges, gas, or discomfort. A month ago, I passed a very small amount with mucus. Yesterday was the same, and today, a liquid gas bubble mucus with a small amount of stool. There's no blood or pain. I feel better when it's done. Why doesn't anyone explain these issues, as at first I was really scared? Thank you for being here.

They leave a lot unsaid when you get your ostomy. And a lot also is hands-on experience. My first doc did tell me about mucus coming out of the bottom end. But as far as everything else and what to look for when there's a problem, they don't, and they should. They don't go over prolapse, retraction, what color the stoma would be if it's being strangled or doesn't have enough blood flow, they don't explain blockages either, and the list goes on. Why they don't, I have no idea. Should they? Yes, would a lot of people be too scared to have the surgery done after hearing all that? Probably. Is this the first time you have passed mucus in 15 years?

No, I've had very small amounts occasionally over the years, but this was like a buildup. I'm 68 and it's reversible, but I'm actually comfortable with it.

Thank you so much for your response; it really helps ease my mind 🥰

Mucus can come out looking like a bowel movement. It can give you an urge to go or push. It's just mucus that has been in there a while. It is ok it's not a problem if you are not having bleeding or bad discomfort. If you feel relief once it has been expelled then you are probably fine. 

As the others have said, mucus is common, and it can look like stool, both in colour and consistency.  I find, for me, it's very inconsistent.  Sometimes I have very little mucus and its just clear in colour and other times it's kind of a carmel colour and quite thick.  I don't think you have anything to worry about.

Terry

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I still have the problem of feeling like I'm going to have a bowel movement and sitting on the commode. I still have mucus coming out, and it's been 13 or 14 years, so it is very uncomfortable.

Hey Dottie, for some, it is uncomfortable and painful if it sits in too long and hardens, or if you have pelvic floor issues where you can't get it out. Unfortunately, since you still have your rectum, you will constantly have mucus; that won't change because the rectum is constantly making mucus and sloth, and it will continue to do so, unfortunately.

I have a permanent ileostomy. So I don't understand why it keeps coming out all the time. All the Dr says he thinks he is going to have to go back in and redo it.

Dottie, what would the doctor go and redo? The mucus comes from your rectum. The rectum is what creates mucus and sloth. And while you still have your rectum, it will continue to make mucus and sloth that doesn't stop. The only way to stop it is to have your rectum removed.

Thanks for the info. That may be what he's talking about. I know that ileostomy can't ever be reversed. And I also have M.S. I have been doing good until about 2 years ago…

Dottie, before making the decision to get it removed, do your research and weigh the pros and cons. If that's what your doctor was talking about, he should have been clear and told you. Did the doctor not tell you about the mucus when you got your ileo?

My understanding is that my bottom was sewed up and I could never use it again. He did tell my husband that a little flap was left in, and once they got that out, we would see a big difference. We are going back to Nashville in about 4 weeks, so I will get more information.

If you're passing mucus and have your rectum still, your bottom isn't seen up; that would be what we call here a barbie butt. They take the rectum and the anus. Me, I am different; I had my rectum removed but left my anus. Removing the anus wasn't an option for me. Sounds like the doctor was just talking about an end ileostomy. They don't remove the rectum when they do ostomy surgery, unless there is a reason to, which they would tell you and go over it with you before surgery. Who is your doctor in Nashville?