I'm having my proctocolectomy this Friday and I have found amazing support from the Osotomies forum on this site. Everyone there can give you really great advice and they share their experiences, which has helped me tremendously!
I also have had failed medical attempts, but I've only had UC for 2 years. I know she's worried about the surgery b/c at her age making such a big decision like that is extremely difficult. However, I also am always tired and am in an ungodly amount of pain. I am ready to gain back control of my life and start living again.
Something else that kicked my gear into overdrive for the surgery is the fact that b/c of the high doses of Prednisone and Remicade treatments my immune system is severely compromised. I've had a few very painful abscesses, which required removals and open wound care, and then I had a MRSA staph infection that was difficult to get rid of. I currently have around 10 skin cysts under my left armpit that are each the size of lima bean and they will all be removed on Friday as well.
I am so sorry you and your daughter are going through this. Surgery really is such a scary option...but for me I have no choice...I need to be better. I wish there were more options for your daughter too, but it sounds as though she doesn't have much of a life right now outside of the bathroom and bed...which is where I have been.
I wish you the best, and do post a threat on the Ostomies forum, as I know everyone there would be more than happy to help you. : )
: ) Robin
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
"Your mind is like a parachute, it only works when it is open."
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!