Hi, this might be the wrong forum.
I am wondering if anyone out there knows of someone who is developmentally disabled, basically mentally retarded, and had to have an ileostomy? My daughter has severe UC and has been refactory to much medical treatment, although we are still trying everything. The side effects from all the drugs, the frequent states of anemia & hospitiliizations, her inability to unerstand this disease and manage it herself, have lead many on her team to talk frankly about colectomy. We have bought time this far with Remicade, and when she is feeling good, she reallly feels good, but I don't see how this can play out long term.
Our greatest concern is how she would tolerate an ostomy. She is severly autistic and tears everything off that rubs her sensory system the wrong way (a small example: a bandaid, a bigger example, 2 PICC lines in the hospital) We could only hope with the cool new accessories out there and with sheer time she would get used to wearing a bag, but we shudder at visions of her going to a public pool and ripping her osotomy bag off!
This might be a bit specialized of a topic on this forum, but I thought I'd give the shout out. We are so stressed most of the time with the Autism to begin with, and the UC has just added tons to that.