Managing Unexpected Ileostomy Output in Children

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352
TylerJoe
Oct 29, 2022 10:18 pm

My son, who not only has an ileostomy but is also in a wheelchair (he has Duchenne Muscular Dystrophy) and has intellectual disabilities, had his ileostomy surgery almost 5 years ago. For the last several months, he has had poop in his pants daily. I'm not talking about mucus, I mean actual poop. Anyone else dealing with this? I can't imagine this is normal. The doctor said it is "shedding"... I refuse to believe it is only this.

Thoughts and/or feedback appreciated.

w30bob
Oct 29, 2022 11:30 pm

Hi TylerJoe,

Assuming your doctor knows what he's talking about... and I hate to assume... did you ask him why it's happening now? I mean, intestinal epithelial cell shedding is a real thing, but something needs to trigger it for it to increase in rate. And from what you're saying, I don't think our bowels can shed those cells that fast and in that quantity to have it show up as bowel output every day. Something sounds amiss, although there's not a lot of info out there on intestinal epithelial cell shedding. And that's because it has to be observed in a living intestine, which is a bit hard to do. I wouldn't hesitate to get a second or third opinion on this one... and have whatever is showing up in his pants analyzed to determine if it is in fact dead intestinal epithelial cells. I mean, if it is... something is triggering it. Could be a change in meds or stress, or something that causes a large increase in TNF. I'd say give the Gastro department at UVa and/or Duke a call and see what they say. If they're stumped, up the game to the Cleveland Clinic and/or Mayo. And let us know how you make out... sorry I can't be of more help... this one is a puzzler.

;O)

bob

  

Posted by: Audrey Warren

This site is a godsend. As a newbie (colostomy on Nov 8, '21), I look at it every day for a number of reasons. Reading what people are going through makes me grateful that my elective surgery because of a severe case of IBS-C is nothing compared to what they have been through and are still living with.

I don't have to go to the hospital for anything related to my ostomy. I feel sorry for those who do and am in awe of those who can use humor to describe their ordeal. I identify with those who express their fears. I especially identify with those who are depressed because I am clinically depressed and have general anxiety disorder. How ironic that having a colostomy eliminated some of the depression and anxiety that the IBS created. I've been widowed twice and I'm on match.com.
I immediately included my operation in my profile and am pleased to say it doesn't seem to make a difference.

And there is much humor on this site and it's one of the reasons I enjoy it so much.

I could name numerous things I've learned from reading people's comments/questions/answers.

After months following on a daily basis, my only negative comment is I don't like listing the most popular members.
It's not that I don't like these people; I do. It's that I think it elicits some "Facebook"-like banter or comments that are gratuitous.

I don't do any social media and think that its merits are overshadowed by too much negativity.

Meetanostomate is in no way negative. I just think the gallery of "popularity" detracts from what is an excellent website that deals with a serious issue that causes a myriad of emotions.

Bill
Oct 30, 2022 7:57 am

Puzzler it may be, but your reply was very interesting and informative. Thanks. I have already learned something new today!

Best wishes

Bill

ron in mich
Oct 30, 2022 2:01 pm

Hi Tyler, I'm assuming your son still has his rectum and is producing mucus mixed with some old blood so that it looks like poop and smells bad. Could there maybe be an infection there causing the output?