Lew, I understand what you and your son are going through. My daughter was diagnosed a year and a half ago and is in her 3rd flare. The first time, asacol, rowasa, hydrocortisone enemas, and prednisone got her into remission (after missing 9 weeks of school). Almost exactly one year later, she flared again. This time the prednisone didn't seem to work as well. It took a higher dose for a longer time to kick it in. At the same time, she started
6-mp. about 3 weeks ago, she started flaring again. All her bloodwork comes back OK (in terms of 6-mp) so the doctor feels that it is not helping her flare. She is back on prednisone. Tuesday she goes for her first Remicade treatment. The doctor was concerned about some dysplasia they saw in her colonoscopies but the pathologist feels it is not something that needs to be addressed immediately. HerGI did start talking about surgery (instead of Remicade if the colonoscopy had shown signs of dysplasia to be worried about). When my daughter is in a flare like she is now (no sign of remission), she almost looks forward to surgery. She knows it is permanent, knows it is a long recovery, knows it may affect the end of her junior year, senior year, and/or the first year of college. It is scary. As a parent, I don't want to make the decision for her alone. I am not the one who will have to live with it forever. We do plan on seeing a surgeon (hopefully if she gets into remission soon) to create a rapport with him and to get as many answers as possible while we are not under any intense pressure to make a decision.
It hurts me to see her in such pain. When she is in remission, her life seems "normal". I hate seeing her miss so much of what should be some fun times (extracurricular activities). This current flare has caused her to drop out of the pit for the school musical, she probably won't be in a music competition next week (she is kind of happy about that), she misses spending time with her friends. But surgery is no quick fix either.
It is a hard decision to make.
--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!