Living with an Ileostomy: Unexplained Symptoms and Experiences

Replies
12
Views
417
Angellady
Oct 19, 2024 11:54 pm

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.

Beth22
Oct 20, 2024 12:54 am

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?

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 39,633 members.

But, it's not all about ostomy. We talk about everything.

Many come here for advice, others find lasting friendships, and some have even found love.

"This group has been my go-to during my loneliest hours ...", one member said. And it's true, people here are honest and genuinely care.

🛑 Privacy is very important - there are many features only visible to members.

Create Account

  39,633 members

Angellady
Oct 20, 2024 1:17 am
Reply to Beth22

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 🥰

infinitycastle52777
Oct 20, 2024 7:40 pm

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. 

TerryLT
Oct 20, 2024 8:17 pm

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

 

My Ostomy Journey: Bruce | Hollister

Play
004dottie
Mar 07, 2025 10:29 pm
Reply to Beth22

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.

Beth22
Mar 07, 2025 11:11 pm
Reply to 004dottie

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.

004dottie
Mar 07, 2025 11:22 pm
Reply to Beth22

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.

Beth22
Mar 07, 2025 11:41 pm
Reply to 004dottie

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.

004dottie
Mar 08, 2025 3:24 am
Reply to Beth22

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…

Beth22
Mar 08, 2025 4:12 am
Reply to 004dottie

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?

004dottie
Mar 08, 2025 1:33 pm
Reply to Beth22

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.

Beth22
Mar 08, 2025 2:44 pm
Reply to 004dottie

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?

↑