I am sorry your family has to go through this, and yes it is scary. I had my Radical Cystectomy eight years ago and I have an Indiana pouch. Mine has a stoma located in my naval and I catheterize about every four or five hours and get up about once a night. It will take some time to train but once it is I have found mine has worked out very well. There are pros and cons to all the different types of diversions but it is interesting that when surveyed no matter what type of diversion they had people said theirs were the best type to have. I think it is a matter of getting used to something and once you do it becomes normal and a part of your life. I hope this helps a little and if you have any questions we are here. Keep us updated.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society