We met with a surgeon yesterday. He was very easy to talk to. He has all Bratcat's records, asked lots of questions, explained lots. We also met 2 nurses. All told us to call or email if we have more questions (which we are compiling). He offered to see if one of his patients would be willing to talk to us. (I asked to find one who is a teenager like Bratcat.)
He does feel that she would do well with surgery. But he isn't rushing for a decision. If she were to have it, it would be better to have it during the summer. More time to recuperate and get used to the change before going back to school. She missed 9 weeks last year and almost 16 weeks this year (2 separate flares). Amazingly she is still an honor student. But next year is her senior year.
Bratcat, her dad, and I are about 50-50 on the surgery. She is not completely wowed at the thought of removing her colon but she definitely doesn't want to worry about flares (and can't stand being on prednisone). It is looking like she is steroid dependent. Hopefully the Remicade will work (3rd treatment next Tuesday).
In the meantime, she is back to school for about 1/2 the day. She has her junior prom next Thursday. Finally found a dress that looks great on her (and she feels great in). Had to settle for her 3rd choice of color (the others were out of stock) but she'll jazz it up with some knockout jewelry.
By the way, her brother (he calls himself nonamejames) had the camera endoscopy last week. He goes back to the doctor in early June so we will see what he says. He started 6-mp. So far, he feels fine.
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 50 mg prednisone
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!