Francine - I'm so sorry to hear of all the problems that you are having with Katie's appliance and skin. I hope that the nurse is/was able to help today. There is a lot of information on the jpouch.org forum about
skin problems for people with ostomies and also on uoaa.org. One posting in particular on jpouch.org is for a person that had major skin issues (2nd degree burns under her wafer) and has listed many of the things that she tried and others suggested to fix her skin so that she could keep a wafer on and her skin could heal. Go to www.jpouch.org
and go to jpouch forums. Search in the general discussion for "Need incision and ostomy help-yesterday!!" and you will find the message thread. There may be some information that you can use in it.
I do know that all the WOCN's that I've seen have recommended and as many people that have posted have said - less product is better. With both my end and now my loop ileo I use stoma powder if my skin is irritated, followed by the wafer with some adapt barrier (the ring not the cream) on the wafer around the hole and that is it. I did find out that due to my allergies I had to use an adhesive remover to get all the adhesive from the old flange off or my skin would turn red and weep. That may help to resolve the pain issue with pulling off the wafer vs using the no sting barrier. I would recommend that you get one of the ones w/o alcohol or it will sting on the
open sores and clean well after you use it as they are oil. Also, in case no one has suggested this, push the skin away from the wafer rather than peeling the wafer up. I found this suggestion when I was having weeping skin problems and have found that by using the adhesive remover, pushing the skin away, and shaving where the wafer goes when I change I have had great success with not causing additional skin problems (other than those caused by leakage because I waited to long to change). I also found that if my output was thick that I had more problems with leakage than if it was thinner. The thick output would always pancake on me and then force itself under the appliance rather than falling down to the bottom of the bag. Due to my adhesive allergies I use a wafer that has no tape around it. It is a Hollister new image 2 piece with a lock and roll bag. So far I know that both hollister and convatec have no-tape wafers and I'm guessing that all suppliers do.
Is your daughter wearing a belt? I'm guessing that as a 3 year old she probably moves around a lot and a belt could help to get a little longer use out of her appliance. I wear one 24*7 except for when I shower. I was in a 4" nu-hope and now am in a 5" with my loop ileo due to the appliance size. They work very well for me to get the wafer to stay on. If I don't wear one I have to change in 36 hours or less due to leaks. I do have some crevices around my stoma which are flattened out by the belt in addition to helping to hold the wafer on. I'm guessing that a smaller one would work for her (not sure of her appliance size). The 1" belt did nothing for me as it got looser as I moved around.
I hope that you can find a solution soon to keep her appliance on for longer and also can get her skin healed.
Ducridr - 36 - female
Diagnosed w/ severe pancolitis 11/20/2007
Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 15 mg (started at 40mg Nov 08 - off June 09), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day) Coumadin (for blood clot) 5mg/day, 1st Remicade treatment 2/4/2009, 2nd - 2/18/09. Currently getting Remicade every 4 weeks.
J-Pouch surgery #1 of 3 on 8/21/2009!!!
Surgery #2 on 1/4/2010