Please tell me about your Ileostomy

My best friend is going to have surgery on 13 August to have an ileostomy. We’ve been looking at a number of related websites to see what her life will be like afterwards, and we’ve found a couple of message boards and chatrooms, but the majority seem to be people who are having problems and asking for advice about specific problems and complications.

She’s a bit trepidatious about the whole process, and the stories about what could go wrong, or all the problems one could have are unnerving her. She’d just like everyday, ordinary comments, too!

I asked her if she would like me to start a post for her, cos I said you lot can come through with anything. She’s not registered, but if you need any specific info from her, I can forward your questions.

So if anyone has any anecdotes, experiences, anything – good and bad, she asked me to ask people not to worry about holding anything back! – please if you would write about it.

Thank you :slight_smile:

I don’t have an ileostomy, but I am a home health nurse who deals with new ostomy patients all the time. I have seen people sent home with little or no information or training, which really burns me. Others are discharged after having spent time with an ostomy nurse, who walks them through the required equipment and daily maintenance. I hope your friend can have an ostomy nurse visit before leaving the hospital, but if not then make sure her doctor orders visits from a home health agency. It’s not as scary as it might seem. My patients are generally in their 70s or older, and they are able to manage alright. Best of luck to your friend - tell her not to be afraid of asking “silly” questions, because it’s better to find out from a professional than on your own, when your bag breaks at 3:00 in the morning.