What It's Like to Be A Teenager with Crohn's
In April 2015, I was diagnosed with Crohn’s disease. After years of not being able to gain any weight, having very little energy, not being able to grow, and my shoe size not changing for an entire year, my family and I finally had an answer. I did not know what Crohn’s disease really was, but I did know that being labeled with having a disease was scary. When my mom found out she thought of it almost as a relief, because now we knew what caused all of these symptoms. All I knew was that I would have to go for three-hour long infusions of a medication called Remicade. After I had my first two infusions, I had an anaphylactic reaction and was bouncing around from one drug to the next.
This brings me to the summer of 2016 when I was home for the summer from camp where I have been going the past eight summers. I remember that I was stuck on the couch in front of the TV watching the 2016 Summer Olympics. Everyday hours passed of complete boredom and discomfort as I was unable to keep my Crohn’s under control. One night, Kathleen Baker hopped out of the pool and thanked her doctor for helping her overcome Crohn’s disease.
This instantly inspired me. I had never even thought of looking into professional athletes with Crohn’s, it never crossed my mind. I myself was an athlete but I was unable to play very many sports. With the constant belly pain and fatigue it was difficult for me to keep up with my peers.
Sharing My Story
Seeing Kathleen succeed inspired me to look up professional athletes with Crohn’s disease on the internet. I did not recognize many of the names except for one, Larry Nance, Jr. I had known his name from playing the game NBA 2k. I decided I wanted to reach out to him on social media, via Instagram direct message, and let him know my story. With a little bit of background work from my parents, Larry decided to surprise me and call me on my cell phone. After a one-sided conversation with my jaw dropped to the ground, he invited me to a game when he would be in New York.
After the game I was able to meet him and we shared stories. That night will forever be one of the best nights of my life. He had shared with my family and I how he wanted to get more involved with Crohn’s and colitis, and charity work.
Connect with Others
When I went home that night I thought about it and came up with the idea of an organization “Athletes vs. Crohn’s and Colitis." I happened to see him again the next weekend where I presented him with my idea, and he quickly hopped on board. Our organization has been an outlet for me to connect to other kids with Crohn’s and colitis, and has really aided me in my journey with Crohn’s.
This brings me to who I am today. A teenager with Crohn’s disease. If you are also a teenager with IBD, here are some tips that I have found helpful:
1. Establish Your New Normal
It is not easy living with Crohn’s disease, ulcerative colitis or any other chronic illness for that matter. There is a lot of disruption to school and extracurricular activities. It is a huge time commitment to have a chronic illness! I bet people don’t think about that. Doctors appointments, infusions, tests, hospitalization, surgery, these take hours, days, weeks and sometimes months. The people around me it seems kept going with their “normal” lives while I drove into the city an hour away, prepped for a colonoscopy, sat in an infusion center, and went through hospitalization after an ileocolic resection. But what I have come to realize is that I can establish a new “normal”, that is my “normal”, a teen living with Crohn’s. I try as much as I can to make Crohn’s work around my schedule.
2. Have Grit, Resilience and Positivity
My doctor, a pediatric gastroenterologist, spoke to me about qualities that she believes help patients to feel good and positively impact their well being. She spoke to me about grit and resilience. I have read about grit and resilience and learned that a positive attitude can really help me get through the challenges that Crohn’s presents me with.
If my mind starts to think about the negative I distract myself. This can be by playing sports, video games or spending time with family and friends.
3. Use Your Community or a Role Model for Support
I use my community of peers, family and others living with IBD as support. I have identified a role modeI who inspires me, Larry Nance Jr. Though my inspiration is a professional athlete, someone else's may be a friend, a relative or co-worker.
4. Do What Makes You Feel Good
I try to make healthy choices everyday, eating healthy and exercising as much as I can. I work hard to succeed academically, socially and athletically because I have found that the harder I work to succeed the better I feel.
I am also inspired by all the other children living with IBD who work hard just like me to overcome so many challenges. I hope that I am a role model to them. What I realize is that some days are good and some days are not, but you have to take advantage of all the times you feel good and accept the times that you don’t. After all, everyone has bad days. This has been my journey with Crohn’s the last 4 years. Some high highs and some low lows. Even though everyone’s experience is different, all IBD patients should know they are not alone. I realized that the day I googled Larry Nance Jr.
This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your condition.
About Noah Weber Noah Weber is 15 years and he has Crohn's disease. He is a proud member of the IBD community and he's always happy to share his story.
Noah co-founded Athletes vs. Crohn's with NBA player, Larry Nance, Jr. in January 2017.
The mission of AVC is to raise awareness of Crohn’s and colitis in the adolescent population and help children realize their athletic potential despite being diagnosed with a chronic illness. For more information, visit www.athletesvscrohns.org.