If your reading...
This post goes out to any other transplant moms whose kiddos still have an ileostomy and to any of my favorite transplant nurses(you girls all know who you are:) if your reading today.
Ash's skin is breaking down in the worst way around her stoma. It has actually broken down all the way into her transplant scar(which is midline) and down to her upper thigh under the stoma. I can't get her bags to seal NO MATTER WHAT I try and she is in a lot of pain. Its making me crazy. Last night I actually left her ostomy bag off for three hours, placed a wet wash cloth around the stoma, and held her in the recliner just so she could sleep.
I don't know what else to try. We use the Hollister one piece bag, with an adapt seal(made by Hollister), we have the stoma adhesive, stoma powder, and barrier wands. I've tried all of it in many combinations trying to get it to seal against her skin, but the problem is that her skin is weeping and oozing and is really not in tact enough for anything to seal too. This in turn causes more of stool to leak onto the wounded area and cause more damage. We are using multiple bags(up to 5 or 6) a day. I have cleaned, bathed, dried, and prepped the area in every way I know how to. Nothing is helping.
Ash is miserable. As the stool leaks it burn and sets her skin on fire. She is screaming and crying and nothing helps. If you have any tips, any advice, or any new products out there please let me know. I'll do anything to get the skin to heal and make her life easier.
Thanks guys. Trish