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:

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

Dulac 8 days ago in reply to Nicky009

Hello Nicky009,

Since the op 3 years ago all seems good and the stump remains. It was never considered for removal as there was no point. Never had bleeding or needed medication for it. The short length of rectum I was left with does nothing at all, apart from producing a very small amount of mucus every now and again that stopped some time ago. After the long lesion was removed my colon and rectum couldn't be reconnected because of scar tissue (chemoradiotherapy?) The only solution left for the surgeon was to create a colostomy as a termfnal for the severed colon. The pre-existing ileostomy intercepted digested food before it reached the colon, which was then effectively redundant. I was told that my colon would continue to produce mucus naturally, which it does in very small quantities. A pouch isn't necessary, just a waterproof and absorbent self adhesive cap which couldn't be easier. The stoma is flat. For a routine colonoscopy no laxative is required and the point of entry for the scope is via the colostomy. A few weeks after surgery a batch of Malteser size firm lumps passed through the colostomy but the medics believed they were fibre leftover from when my colon used to function. That happened a couple of times but not since.

Sorry to rattle on but as you say, we all have our own tales to tell which might reassure others in a similar position.

Oh, and as a man the traditional prostate examination no longer applies: scans from now on!

Dulac

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