I wonder if the hospital has some kind of parents' group -- I'm sure a lot of parents dealing w/their child's medical issues have similar feelings even if the medical issues aren't quite the same. I think it's so hard for people to go beyond imagining what it would be like for their kid to have a bag or imagining that they had a bag at her age etc , that they stop being there for you and get lost in their own thing. Plus they just have no idea that a bag can be a good thing.
I don't blame you at all for avoiding people who react this way. This is so hard for you and you need to be there for your daughter. You need people who can support you, not pity you. I hope you can find them..... but you have us here. Vent away.
The bag is sooooo much better than the disease..... when you see her healthy and being a kid again, you're going to be fine.
And it is very sad..... but also hopeful.
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.
Post Edited (blueglass) : 9/25/2011 8:38:19 PM (GMT-6)