Thank you so much for the information. I will check out the site. This morning my sister made the decision to go with the neobladder and seems at peace with it for the first time in a long time. Thanks again, Barbara
My Dad has the ileal conduit and I have learned so much valuable info by visiting the website www.uoaa.org
. It is an ostomy site filled with helpful caring people (just like this site) who are always willing to give advice or suggestions. The only drawback is that it is a site for people with all kinds of ostomies: colonostomies, ileostomies, and urostomies. You just have to pay attention to which kind of ostomy a person is writing about.
When my Dad has any trouble with rashes or any other problem concerning his ostomy, I post a question there and lots of people reply with helpful information.
When you go to the site, click on Discussion in the top menu bar, then General Ostomy Discussion. That takes you to the page where people post questions and comments. You have to register with the site to be able to post comments/questions.
My Dad has had his conduit for about 17 months now and yesterday remarked to me that it is now "just a part of him and no big deal." For an 82-year-old, that is quite a testimony! At night he attaches his pouch to a tube and a drainage bottle and can toss and turn at will and sleep through the night.
Check out the ostomy site. I think you will find lots of helpful people available there, too.
The response regarding my sister has been unbelievable. Now I'm asking if I can get some feedback from people who have the ileal conduit.(I think thats what you call the one that is outside the body) I want her to have as much info as possible. This is so hard for us all. Thank you, Barbara