My daughter had surgery (step 1) last July. Step 2 was in November. For her, it was the best decision.
She had her first flare in the fall of 2006 (she was 15-1/2 years old). She had 2 more flares within the next 1-1/2 years. They were very intense and kept her out of school for almost 2 months each time. You can see from my signature that she tried most meds. They would work for awhile and then stop. Even prednisone took longer and longer to work. She didn't want to try Humira or cyclosporine.
She (along with my husband and myself) tried to weigh both sides (surgery or not). She didn't want to worry about having to take these powerful drugs for the next 60+ years. She didn't want to worry about maintaining a job during a flare. She didn't want to worry about having a flare either during or after pregnancy and then having to worry about being a mom during a flare. She wanted to finally enjoy her high school years again.
We decided on surgery at the beginning of the summer to allow her to recuperate and adjust. She had her ostomy for the beginning of senior year but she was healthy and could participate in everything. She had her reversal in November and was out about 3 weeks (Thanksgiving was part of that time).
The first surgery was tough. It was about 7 hours. She was in the hospital for 6 days. It was a slow recovery (partly due to the fact that she had no need to rush back to school). It took some time to get used to her ostomy. She never loved it but she learned to deal with it. In the early days at home we thought she would never figure out how to change the appliance and such but the people on the Ostomies forum are a godsend!
Step 2 was 45 minutes long. She was in the hospital for 4 days. With a smile on her face and energy to walk the halls. After step 2 she did have some butt burn and a few episodes of "oops" on her panties (not full fledged accidents). The more she ate, the better that got. Within 2 weeks she was under control.
She had a fabulous senior year. There is a peacefulness on her face that I hadn't seen even when she was in remission. She can eat just about anything. She knows if certain foods bother her and she chooses whether or not she wants to deal with it. She is planning for college. She is on no meds. She lost all the prednisone weight and feels great.
She was in remission when she had her surgery (she had just come out of a flare). I think her mindset and the family support helped alot. We spent alot of time discussing the what ifs of the future. She had a full-incision surgery (what her surgeon performs). She had no image problems with it and, honestly, the surgeon did a great job and it is not ugly to look at and it is fading well. She knows there is a chance that she may have fertility issues. She weighed that against being in a flare as a mom and still wanted surgery.
I hope you find a decision that is right for your son. It isn't an easy decision to make and especially hard when it is your child.
--Mom of bratcat (18 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect! Living and loving life as a teenager should!
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp