Mucus leak and total colectomy

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Hello,

I live with a loop end ileostomy at the moment and I am struggling to live my life/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 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. 

I have an appointment with my GI consultant in a few weeks and I am considering asking for a total colectomy (complete removal of large bowel). This is seen as a major surgery and it appears like 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 which are getting stuck internally.

My questions are as follows:

  1. Does the mucus ever stop? Have you found anything that reduces it?
  2. Do you have a better solution for managing the mucus leaks? Looking for some DIY solution here as it doesn’t seem like there is anything medically further which I haven’t been offered
  3. Has anyone had a total colectomy/’barbie butt’ surgery? What has been your experience of life after the surgery? Is 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 to not do another surgery without understanding all future implications on my life

I appreciate any help or advice from the community!

  • Hi I had a total colectomy and "barbie butt" in 2019.because of a history of colitis followed by bowel cancer.If you read my bio you can see how I have got on since.then if you have any questions I am more than happy to share my positive experiance.

    Kath

  • Nothing stops the mucous. It is a natural part of the bowel function. I wear pads to go out of the house and clean the area frequently to prevent infections. I also use a diaper rash cream. I haven't had the skin problems you describe. 

    If you have a loop ileostomy, was it intended to be temporary? Since you still have colon, I would think so. You probably already know this but Barbie butt surgery means they can't reverse the ileostomy. 

    When I had my surgery, there was a possibility that I would end up with a Barbie butt. I didn't but I was told that if I did, the wound could give all kinds of problems healing. This will not be easy.