You are all so wonderful! It is nice to know others understand what she is going through. And have suggestions to boot!
Mary--I will order some Allkare. It sounds like it will help alot. She's been using paper towels. Luckily we buy the jumbo packages from BJs (just like toilet paper)! I am getting better at helping her because I had everything prepared (cut, pasted, etc) so when she finally was ready we were able to get it on.
Krista--glad your daughter is doing well. You said you use Eakin seals. I have read several people use them. Do you know who makes them? The paste has some alcohol in it and it burns when we put the wafer on. But my daughter definitely needs something.
Summer--she might try "helping" her stoma poop! It doesn't bother her that it does it except when she has just wiped everything down and it makes a mess again. I will check out the other thread you mentioned.
Ohio--the marshmallows do work. We are aiming for a once during the week, once on the weekend change too.
Praying--she also has just enough hair that you can't see but that makes it hurt more to remove. We also feel that if she changes it right before having to go out for the day she will spend more time worrying about any leaks than what she is supposed to do. Plus if it does leak during the night, she still has a chance to fix it before morning.
We are hoping to work out most of the kinks in the whole changing the wafer routine before school starts (beginning of September). All your suggestions sound wonderful.
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare! 7/3/08-Step 1 j-pouch surgery