ileostomy and autism

[waalkest]

Does anyone know how my son would react if he gets an ileostomy. He has no large intestine, very watery stools and I am tired, so tired of cleaning up the mess for 9 years with cleaning sheets daily, have stained mattresses etc?

Any advice would be appreciated.

Lana:)

[Judith Doherty]

What's the background information here? Does his physician recommend this?

My older child with autism has serious gastro issues (I have Crohn's disease myself) and I spent ten years before he was (mostly) potty trained. He still needs to be put on toilet every day at 6PM in order to keeo him trained. BTW, some link auto-immune disorders like Crohn's to autism.....

I think this will get better if it is not strictly a physical issue. But tell us more about his condition.

Brendon did have surgery to remove a nevus (large birthmark that had changed) last year, he did well with anaesthesia, I was with him for that part, but recovery was rough, he kept rippong out his sutures, and it took a full year (!) to completely heal over this deep incision, quite a nightmare. We were lucky that there was no infection after this.

Judy

Mother of two with autism, Brendon, 15, and Caroline, 9.

[Dave]

I'll be honest, I don't even know what an ileostomy is. My wife however works and assists in a medical practice that performs many different surgeries, so maybe she can get an inside scoop on this. What is the reason for your son not having a large intestine? She will probably post if she can find out anything. If you are cleaning fecal ridden sheets every day you are headed for saint hood for sure. For now though, have you tried plastic mattress covers to keep your mattress clean? You can at least bleach and wash a sheet, but a mattress is another story.

[waalkest]

An ileostomy consists of a bag on the lower abdomen to collect stool. My son was born at 26 1/2 weeks and had his large intestine removed at age 18 days due to necrotizing enterocolitis. Mattress pads and sheets do not protect mattresses if there is enough poop. It stains the mattress anyway. Thanks for your support, though.

Lana

[Judith Doherty]

Hi Lana,

When I had this problem with Brendon (he has his intestines, etc., but they did consider a colostomy at one point) I got zippered mattress covers (not the ones with the elastic) that covered the entire mattress, but I had three on at a time. It was the only thing that worked. I would go through a replacement to the top one every 10 days or so, but at $6.99, it was easier and cheaper than the new mattress all the time.

He is still wet 6 out of 7 mornings (soaked through all quilts, etc.) So it was a real crisis last wekk when our dryer broke and it was raining! Nobody who hasn't experienced this has a clue as to how disheartening this can be. I feel like I have a Phd. in laundry issues, I have been changing diapers for almost 16 years straight too.

Please tell us more about your child.

Judy

[Dave]

I know they make plastic mattress covers too, or at least we had them when I was younger. I remember my mother using them for my younger brothers beds when they were in the bed wetting stage. Beyond that, you can even get a water proof mattress, you might get one from a medical supplier or something. I think they have them for women who want to deliver at home and etc. I found a page on ileostomy that you might find interesting and there are some contact numbers for info. They might have some good tips for you. I'll post if I find something else.

http://www.niddk.nih.gov/health/digest/summary/iostomy/iostomy.htm