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.
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
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Hubz had a regular checkup with the oncologist on Friday (his numbers are improving), and as they were asking how he's feeling since surgery, they became curious about how he's doing so well with his ostomy, both physically and mentally. He credited doing research online, trying different things, and especially the support from this group. They were asking because they see so many patients struggling to adjust.
We described this group as folks with every kind of ostomy, some for days while others for decades, but all willing to share what's worked for them with the caveat that every individual is different.
We described the most valuable element as feeling like you're not alone in this. That really piqued their interest, and they wrote down the link. It seems they had a few people in mind that might benefit from the community and thanked us for telling them about it.
You know, we can't remember exactly who we learned about this group from, but we're grateful for it every day! Thank you all! 🌻
Puzzler it may be, but your reply was very interesting and informative. Thanks. I have already learned something new today!
Best wishes
Bill
