ostomy for a "disabled" girl

I dont know how she is, but could you put some type of clothing over her bag that she couldnt remove? That way she couldnt tear the bag off.
And if she went with a jpouch, she would only have the bag for a few months.

And maybe if you got her some neat covers for her bag she might like that.
Im sorry i cant be much help.
there is a site, and i think its dragonkids.com or somethign like that, for kids with ostomies.

Here is one suggestion. Maybe try to find a colon rectal surgeon who is willing to do the whole J-Pouch in one procedure. It is possible, but most doctors dont like to do it. Considering your situation though, you might be able to find one who would consider doing it.

Otherwise, as the others have said, in a two part procedure the bag would only be on for about 3-4 months.

Her surgeons don't want to do a pull through they think it would be medically unsafe as she is so autistic and not always one to get to the bathroom when she has to go, she might poo in her sleep and then the acidic watery bm that one has with a j-pouch would be all over her skin. They are recoommending a permanent ileostomy, and I am beginning to see it might be better option. But we don't know what will come of her behaviors of dealing with a bag (pulling it off, smearing the stuff, etc). Yikes, its too stressful

We are looking at the BCIR procedure as a possible option, no stoma or appliance to mess with, but only a few places in the country that do the surgery.

I have a 21 year old physically and mentally handicapped son. He has had his ileo for over a year now. He does not have the sensory issues your daughter has, but I was also concerned about how he would adjust to the bag. He occasionally will pull at it when I change his diaper, but as long has he has clothes on he does not pay any attention to it. Having the ileostomy has been a blessing for him. He is back to his normal happy self. Good luck.

Yes he was diagnosed with UC Dec of 2007. Every time we would try to taper the steriods he would bleed again. Finally in Sept of 2008 he had another colonoscopy. The GI said in his 10 years he had never seen a colon as diseased as his and did not even complete the scope. He was scheduled for surgery the next week. He has a high pain tolerance and we did not realize how horrible he must have been feeling until after his surgery. Within a month he was acting better than he had in over a year. He wears diapers anyway so having an ostomy is way better than all the bloody diarrhea stools. Currently my only concern is that he did not have a proctectomy and the last month he has had some bloody rectal discharge. We also have trouble with his bags being off almost every morning. He is very gassy and of course unable to burp his own bag. I did get up every couple of hours in the night, but being 50 and working full time it was getting the best of me. We have just learned to deal with it and fortunately we have been able to keep his skin healthy.

Sorry for being so long winded, but I am passonate when it comes to my son. I do believe that if your daughter can adjust to wearing the bag she will feel so much better. Maybe it will help with some of her behavior issues as the pain may be causing it to be worse. J normally is a very happy child, but he had become irritable prior to his surgery. The change in J has been amazing !!

Good Luck. I wish you and your daughter the best.

what about a K-Pouch? I think they are an alternative to the BCIR procedure.

Thank you Js mom. my email is [email protected], if you want to continue the conversation off the forum. All your information is super helpful

What about trying some ostomy appliances, and seeing how she tolerates them, without the actual ostomy. this may not even be feasible, but it's a thought. You would apply them, as you normally would, and see if she bothers them a lot.

that is a good idea! Check out hollister or coloplasts sites and ask for samples! Just tell them your daughter is probably going to have an ostomy and you want to see the bags before you choose a company to go with.
They will probably send you at least one. And if they wont. Send me an email and i will send you one, i am fixing to rotate out the ones i keep in my car anyway.