my daughter was diagnosed at 11. she will be 15 this December. she was 5' and had dropped to 71 lbs that summer. she looked like she had stepped out of a concentration camp. just bone and muscle. she was always tired and had some bleeding. after doing my internet research, like you, I was pretty sure she had crohns. it took the docs a few months to get the tests done and agree with me. I was frustrated with their timetable. if she were a docs kid, she would have had everything done immediately.
she was put on pentasa, flagyl and a slew of vitamins and minerals. she slowly started to gain weight. she did not get any taller for 2 years. this was okay with her since she was a head taller than many of the boys and all of the girls. I am told this is common and they might not grow until their weight comes up and they are healthy. now she is 5'7" and 130.
twice we tried to wean her off the flagyl but her inflammatory markers went up. long term antibiotics scare me but I see no other option.
she is symptom free and her bloodwork is good except she still showed ulcers on her last scope. she has never had ulcers in her mouth. doc is putting her on 6MP next week. I actually found this site researching that. hoping she is one of the lucky ones that doesn't have any side affects. she is an athlete and the crohns interfers. it is obvious when she is feeling fatigued.
I understand your not wanting to medicate your son. I am pretty anti-meds. I rarely take anything for pain and delivered two kids without drugs. also have a 6 year old son I am trying very hard not to medicate for ADHD. so many drugs are so new and their long term effects are unknown.
"And, if he got better 5 years ago without meds, does he really need them now?"
I am sad to say that you might have just been lucky, his disease was so mild or his disease might have progressed since then. I've heard of so many kids that are diagnosed around 11-13 years old.
agree this is a tough disease for kids. only 2 of my daughters friends at school know she has crohns. a third knows but only because she has crohns and that came up in a friend's mom's conversation. you should look into Camp Oasis for your son. my daughter loves it. actually just got back today. I wanted her to see that there are many other kids out there like her. it makes her realize she is not alone. she also sees kids that are in different stages of the disease. my daughter can be a rebel and I think it is important that she sees where this disease can go if she does not take her meds and take care of herself.
another thing I have noticed is that she is one of the few athletes among her Camp Oasis friends. I credit her being pretty fit to how well she has done with the disease. she seems to have less issues when she is most active. eating well is also very important.
good luck to your son!!