I think almost all of us struggled with this decision. Let me give you my story, maybe it will help.
I was Queen of focusing on the times I felt great. When I wasn't flaring, I felt relatively normal (so I thought). So I put off surgery. I tried all the drugs, and I used prednisone constantly. I really thought I felt normal inbetween those flares. Well, continous use of these medicines (I was on prednisone, asacol, immuran, and remicade, to name a few), took it's toll. The medicines cause my liver to shut down. I almost died last summer as my liver just stopped working. I had to stop all meds in order to save my liver and save my life. Of course, the UC came back with a vengence. I was very ill and couldn't take meds to help. I was in the hospital for 3 1/2 weeks on TPN with a picc line. I had been putting off surgery for so long, and now I no longer had a choice. I had to go through my colectomy and ileostomy while I was super sick - which made my healing so much harder. How I wish I had done this when I was 21, and not at 31!!
After my surgery, I realized I had not ben feeling fine OR normal, even inbetween flares. All the meds and the toll of the disease itself had left me exhausted and frail. I had just gotten used to it, and called that normal. Now that I am not on ANY meds (hallelujah!), I feel energized, and healthy. It's an amazing feeling.
I just want to say that the disease itself is bad enough, but when making the decision to have suregery, also take into account the fact that, while she may feel fine between flares, the meds she has to take are extremely taxing on her body. She's so young, does she want to continue to poision her body for the rest of her life? Unfortunately the meds for UC are not side effect free, and they DO affect other organs. Also, the risk of Colon Cancer is very high. And the longer you have UC the more risk you have. BEcause she is so young these reasons may trump having surgery because of the UC itself. Does this make sense at all?
The surgery is difficult, and adjusting will be hard, especially for a young girl. Have her talk to others - have her talk here. But, at least for me, surgery was well worth it, and I regret not having it earlier every day.
If at first you do not succeed, then skydiving is surely not meant for you.
Jo - UC, total colectomy and ileostomy on August 24, 2008.