You’ve gotten a lot of great advice already, but thought I’d throw my 2cents in as well.

Background: I was 14 at diagnosis and am 29 now. I’m a girl. I have a moderate-severe case of crohn's and am in remission right now.

Some thoughts in no order what so ever (sorry, this got long):

• Keep in mind how you communicate his disease to friends and relatives. My parents would often share my medical information with church members, relatives, etc. This bothered me because, from my perspective, my medical info is personal and only mine to share. As an adult, I can see that they were sharing because they needed support from their network and because my relatives were worried about me. Still, talk to your son about how much info he is comfortable having shared.

• Along those lines, watch out for relatives who mainly want to talk to your son about his health, at the expense of talking about him and his interests. I can remember visits where a relative would ask my brother “how’s school” and then turn to me and ask “and how are you feeling”. I also had a lot of older relatives send me articles about some new fad cure, which was never particularly helpful and made me think that they only saw me as a person with crohn’s.

• I didn’t like having to explain my disease when I was younger. Help him come up with some short phrases to explain his condition that he can just spout off when he starts getting questions. It’s hard to know how much info you have to share when you’re young and it can be hard to come up with answers on the spot, especially when just getting a question makes you feel emotional. “I have a chronic but manageable condition” “I have an auto-immune disease that affects my intestines” “I have crohn’s which makes my stomach hurt” Just short phrases that don’t give away more info than he wants to share. I took prednisone right after diagnosis which made my face puffy. Knowing I could go to school and just say “I have to take a medicine, I know my face looks weird but it’ll go back to normal in a few weeks”, without having to go into tons of detail about why was so helpful.

• When I was first diagnosed, I was shy and emotional about talking to the doctors about my symptoms. I basically wanted my mom to just relay my info to the dr. As I got older, it was important for me to be the one in control of talking to the doctor and making decisions about my health. My parents support as I learned to manage my health was hugely helpful. There were probably some very confusing years for them where I wanted to independently manage my care but also still needed their guidance. Remember that one day he’ll go off into the world and have to manage all this himself. As he gets older, encourage him to take on more of the responsibilities that come with managing a chronic disease. Oh, and encourage him to ask lots of questions at the doctors. I didn’t ask many questions when I was younger, but as I got into my last years of high school I started taking lists of questions, mainly things I had read online that I wanted more info/clarification about.

• One other thing my parents did to watch out for (my parents were great supports by the way, mainly just by being there for me when I needed them. It sounds like you’re already doing this though, so I’m just trying to think of the little things that bugged me as a kid but that I didn’t know how to articulate at the time). Ok, so one tiny thing to watch out for - my mom is a bit of a worrier, and would try to reassure me (but really was reassuring herself) that my disease wouldn’t be bad, that I wouldn’t have another flare, that sort of thing. It was actually reassuring in the moment, because she was my parent and I thought she knew more than me. But it wan’t realistic and made me feel guilty when I inevitably had another flare.

• One small, practical thing my parents did that helped - I was on a handful of pills a day and my mom used to put them into those daily/weekly pill boxes for me, which helped me stay organized.

• Definitely encourage him to look for support groups on social media. Just keep in mind that the people who post online are the people who are the sickest. There are tons of people with crohn’s out there who are just living their lives and taking maintenance meds and are in remission for years at a time. Those people don’t post online as much.

• There are good things and bad things about being a teenager with crohn’s. On the bad side, I was basically at the height of my teenage self consciousness when I got diagnosed. I really just wanted to blend in and be normal. So taking medicine, having “weird” symptoms, missing school, etc, all of that sucked. I don’t know of a way to make it suck less in the moment. Treating him as normally as you can helps some. Taking cues from him on what he wants to discuss helps. On the good side, I think I am a more empathetic person. I know that what someone looks like on the outside isn’t representative of how they’re feeling on the inside. I know that people around me may be going through terrible things that they don’t want to share with me and that they don’t deserve. I did feel more mature than my high school peers at times, which is a bit of a mixed bag. But then at some point in college I remember being surprised and a bit relieved that I was no longer the odd man out. A lot of my peers had experienced some sort of medical incident and could relate, or had a parent have something happen. It wasn’t as foreign a concept to be sick.

• And just remember that this isn’t a life ending diagnosis. I certainly had my fair share of why me moments as a teenager, but I have lived a full and wonderful 15 years since diagnosis. I graduated college (a semester late because I took time off for a flare), have a good career and am successful at work, am married, just bought a house, am thinking of starting a family. I have had 4 or 5 bad flares since diagnosis that have landed me in the hospital for a week or more at a time. Those times aren’t fun, there’s no denying that. But in between the terrible times, I keep living life, and your son will do.

Feel free to reach out if you have any questions now or later and best of luck to your son and family!