Seeking Advice on Managing Mucus Leaks with Ileostomy

Hello,

I live with a loop end ileostomy at the moment, and I am struggling to live my life and leave the house. Every day, I am suffering from mucus leaks and having to wash myself twice a day to manage the leaking and try to prevent skin infections and irritation in the area. I have been seeing the stoma nurse, who seems to have provided me with everything available under the NHS, which is usually anal plugs, liners, antiseptic washing liquids, etc. I find it incredibly uncomfortable to use the plugs, and none of the other options are solutions to actually stopping the mucus, nor are they effective methods to collect it. As a result, I am often seeing the GP for recurring skin infections and having to take antibiotics when I eventually need them.

I have an appointment with my GI consultant in a few weeks, and I am considering asking for a total colectomy (complete removal of the large bowel). This is seen as major surgery, and it appears that they generally avoid this surgery, although nothing is going to the large bowel given that I live with an ileostomy. I wanted to ask for your advice and hear your experiences of living with a Barbie butt, as this would be a huge decision for me to make. Unfortunately, there doesn't appear to be another solution on the table, as the mucus is forming balls that are getting stuck internally.

My questions are as follows:

Does the mucus ever stop? Have you found anything that reduces it?

Do you have a better solution for managing the mucus leaks? I am looking for some DIY solutions here, as it doesn't seem like there is anything medically further that I haven't been offered.

Has anyone had a total colectomy/'Barbie butt' surgery? What has been your experience of life after the surgery? Are there any further complications that weren't explained to you prior? I live with the usual fatigue and phantom rectum sensations that come with living with a stoma, but I am cautious not to undergo another surgery without understanding all future implications on my life.

I appreciate any help or advice from the community!

I'm currently living with an ileo myself; my mucus discharge is very manageable. When I empty the bag, I slide forward and gently allow the mucus to drain (I sit on the back edge of the seat to empty the pouch).

I currently have no large colon; my rectum is just a rectal stump, which is getting removed also, and I'm having a Ken bum (or action man bum sounds a little more manly, lol).

If you're going to have the ileo permanently and you can deal with it, well then possibly having the full surgery may be the best way for you to live normally (that's the most important thing: having a livable life).

Speak to your surgeon and explain how you feel. They will listen to you about how your current situation is affecting you day to day. It may be they deem it more worthwhile than the risks the surgery poses (there are a lot of nerves in the pelvic area, bladder control, etc.).

Hope this helps.

Lots of people on here have had the Barbie Butt surgery. Have that done and solve your problem.

Hi there, did your doctor not tell you before your ostomy surgery that you would have mucus? The mucus comes from your rectum; your rectum is what creates mucus and also sloth. As long as you have your rectum, you will always have mucus and sloth. And no, there isn't anything to do but wear a liner or pad and do what you're already doing. Why did you get your ostomy? And to make sure you are informed on everything, I recommend you do research on a Barbie butt and know everything there is about the surgery and what you will be facing afterward so you can make the best decision for yourself.

My mucus smelled awful; you could smell me coming, and that's no exaggeration. I was sewn up around 30 years ago. Apart from getting an abscess after surgery that I had to have the stitches removed so it could drain, there were no other problems.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

I also have a loop/end ileostomy and am living a good life with it. I had my entire colon removed, and it took a while to recover from the surgery, but it wasn't terrible. I have a rectal stump, not a Barbie Butt, so you should discuss that possibility with your surgeon. I have never had mucus coming from my stoma, so I don't know how to advise you on that. Skin irritation can be an issue, but for me, as soon as I started using the Salts aloe rings, mine cleared up and has been good ever since. I hope you find some answers because it sounds like you are going through hell, and life with an ileo shouldn't have to be that way.

Terry

I think she means she has skin irritation from Rectum Terry; that's how I read it anyway.

If the mucus is coming from the rectal stump, you could try mesalamine suppositories. I use one 1,000 mg suppository every other day. The medicine blocks the production of a chemical that causes inflammation.

I was pooping blood and mucus up to five times a day and had to wear a pad at night. It sucked. Now, I go days with nothing coming out. Every once in a while, a little mucus and a small amount of suppository residue come out. It doesn't hurt, and there are no side effects.

As always, talk with your doctor before trying anything new. What works for me could be troublesome for you. Good luck.

I agree with Alex T. I've lived with an ileo and Barbie butt for 74 years.

Hello, thanks for getting back to me. Yes, the mucus is coming from the bottom right now (not the stoma). I apologize for asking, but how is your life with the rectal stump? I have a feeling this will be offered to me. It appears that some mucus and blood discharge is common but treatable with suppositories. Do you have any issues sitting, or are you on long-term medication while having a stump? I am concerned about anything that will impact my quality of life long-term.

Thanks for getting back to me. How has your life been living with a Barbie butt? Any issues around sitting for long periods of time or bladder incontinence? These appear to be the main issues I have heard of people experiencing, along with nerve issues in the area and sexual dysfunction.

They basically slice you in half, so the sitting part takes time to heal, and it's not recommended to sit directly down for some time. It eventually gets better, and then you really don't notice it. Also, it takes time to heal all the nerves, so yes, you could have bladder or sexual issues. Those heal as well in time, or a person could take medication for it.