Lew1201, I am feeling like you. My daughter is almost 17 (next week!) and is in her 3rd flare in a year and a half. She had her first Remicade infusion today so we will see if that helps. But we have started talking about
surgery. There are moments when she just wants to rip her colon out and couldn't care less about
any type of ostomy (we are still not sure about
the different names). She just wants to stop flaring.
We are hoping to meet with a surgeon when she goes into remission. It would be much nicer to think about making these choices when not flaring at the time. Maybe we will be able to meet someone who has gone through this already. See it up close and personal. I have started to look at some websites that explain the surgery and recovery. I don't know if she is ready to face them yet.
I am scared about the thought of surgery. And recovery. And the rest of her life. And all the little details. So is she. We even posted on the Ostomies forum. They were great and made me feel like all those vain questions in my mind were as important as the other questions we have.
As the mother of a teenager, it is a fine line between letting them make the decision (they will be the ones who ultimately have to live with the results), helping them make the decision, and making a decision for them.
I will be reading your posts to see how things progress.
I hope your son feels better soon.
--Mom of bratcat (16 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Asacol - 3 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 60 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!