Our daughter was diagnosed at 15-1/2 years old. She had 3 really big flares (never the mini flares some people talk about
). Either she was in remission or running to the bathroom 30+ times in a few hour period over several weeks. She had surgery this past summer at 17 years old. It is a difficult decision to make for anyone, let alone when the parents have to make the final decision (we decided jointly with her).
You need to look at both sides and see which may be best for your child.
1. Speak with his pediatric GI. Make sure he is the best around.
2. Consult with a surgeon (one who has done many, many surgeries). A consultation does not mean a commitment to surgery. It just means you are doing as much research as possible.
Find out the pros and cons for your child's age.
3. Ask to speak to a family who has had a child go through the same surgery (preferably one with similar issues to your son--age, affects of medicines, etc.). Talking to someone who has gone through what you are experiencing helps alot. We did this with our daughter.
We originally met and scheduled surgery with an experienced pediatric surgeon. While he did many colorectal surgeries, he didn't specialize in them. He referred us to a family whose son had gone through it. They highly recommended him, told us about their scenario, but again, it didn't parallel our issues. Then we went for a second opinion to another surgeon. He is not pediatric but colorectal is his specialty. He referred us to a girl who had been diagnosed around the same age as my daughter, had surgery around the same age and was now 3 years post surgery.
Our daughter didn't have many side effects from her medicines (other than the dreaded prednisone). However they never kept her in remission. That, along with the thought of her battling UC for the next 60+ years as well as wondering what long term effects the drugs would have on her, factored into our decision. We also felt this was a good time while she was still under our insurance and had no major responsibilities (job, children, etc). She was also in remission at the time of surgery, which is generally better for recovery.
So far, she is doing great. She has been on no meds since July. She lost 45 lbs of prednisone weight and looks and feels wonderful. She is finally enjoying her high school experience, something she hasn't been able to completely do since 9th grade (she is in 12th grade now).
Definitely get as much information as you can from as many people as possible. Going into surgery with your eyes wide open (as well as your mind) is a big asset. Not having to make an emergency decision will make your choices easier to see.
--Mom of bratcat (17 years old) and nonamejames (19 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!
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp
Post Edited (Bennie) : 12/2/2008 5:01:52 PM (GMT-7)