JB Lile Receives Special Honor

 

A hero is defined as a person who is admired or idealized for courage, outstanding achievements, or noble qualities. One of our very own Adrian Blackhawks is indeed a hero...a Crohn’s and Colitis Foundation of Missouri Honored Hero of 2021.  JB Lile, an Adrian 9th grader, who lives daily with Crohn’s, serves as a resource for both kids and adults to better understand the Inflammatory Bowel Disease (IBD).  He is grateful for being selected.  JB said, “I appreciate being chosen as the Crohn’s and Colitis Foundation’s Honored Hero of 2021, for being allowed to help educate non-members and be there for kids like me.”

Four years ago, at the age of 10, JB was diagnosed with Crohn’s or Ulcerative Colitis (the exact diagnosis will be determined when he gets older).  Six month after that, he was also diagnosed with Primary Scleroising Colongitis (PSC).  Processing all of that for JB and his family was tough.  He said, “I have gained strength mentally and physically. Mentally because it’s been a lot and hard to get through, and I had to come to terms with it, and physically because I have to stay active and fit to keep my liver in shape.”  This Honored Hero found the positive side of things, too.  JB said, “I wasn’t scared because I knew I had really good doctors and parents who would take care of me.”  

After a four year journey, JB is doing well.  He shared more about how he feels now and what the future could bring regarding his health: “I feel great right now. I get to do things I enjoy, like lift weights and play the piano. I don’t have to visit the doctor all of the time like I used to. But I also understand that IBD is unpredictable. My meds could stop working. My inflammation can and probably will get worse.”

Living with IBD has limited JB with some activities he enjoys, including contact sports.  He said, “IBD excludes me from some things, like football, so some people who don’t understand give me a hard time. It’s also hard when your town is all about a sport I can’t play. It gets easier though.”  When one door closes another opens.  After receiving his diagnosis, JB was introduced to Camp Oasis, a residential summer camp that enriches the lives of youth with Crohn’s or Ulcerative Colitis. He said, “Camp is awesome because there are so many activities you can do with people like you, and I’ve made friends with people all over our state.”

JB is a most gracious teen. He offered these words of appreciation:  “I would like to thank my IBD doctor, Dr. Goyal, and my liver doctor, Dr. Fischer, for helping me get the diseases under control. I would like to thank the Crohn’s and Colitis Foundation for finding and helping kids like me. I’d like to thank my mom and dad for organizing my meds schedule and keeping an eye on my diet. And I’d like to thank my brother Jack for bringing fun and humor into my life and letting me pick on him.”  You can join Team JB anytime! Here's the web address: http://online.crohnscolitisfoundation.org/goto/teamjb 

JB Lile is an Honored Hero, indeed.  Congratulations, JB!

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Below is an essay JB wrote when he was named Missouri Honored Hero of 2021.

I’m JB Lile, I’m 14 years old, and I am proud to represent the Crohn’s and Colitis Foundation as the Kansas City Take Steps Honored Hero of 2021.  I was diagnosed with Crohn’s 4 years ago, but that isn’t where the story begins. Eight years ago, I woke up screaming. I was hunched over the toilet for at least 30 minutes, and I didn’t puke. But the pain didn’t subside. It felt like I was being stabbed in the liver. I could barely breathe. We went to the emergency room, and they said that there was nothing wrong with me--maybe some bacterial infection or virus.

The summer that followed, we switched pediatricians because he said the same thing despite ongoing occurrences. Our new pediatrician, after saying our concerns were merited, finally told us to go to Children’s Mercy in Kansas City (The best city in Missouri!) where I had to have blood work done and was told I had stomach problems. I gave at least 100 vials of blood in the first year.

In the two years that followed before I was diagnosed, I had multiple MRIs and colonoscopies. Oh yeah, and I couldn’t eat cake (and other foods we were slowly eliminating) without spewing everywhere. Ha, good times.

Then, after they diagnosed me with Crohn’s or Ulcerative Colitis (they don’t want to label it for certain until I get older), they prescribed medicine for me (and a lot of it) that helped. Eight pills in the morning. One pill at noon. Twelve pills at a time down the hatch each night.

Six months later, I got some news that was even worse, if you can imagine, than the fact that I have Crohn’s. Apparently, the stomach issues I was having all of those years also took a toll on my liver, and I was diagnosed with Primary Scleroising Colongitis (PSC), or liver disease. This presented a whole new set of issues, like how I now have to keep my sugar levels down, I can’t play contact sports, and it has been suggested that I never drink alcohol. Oh, and I might not live as long of a life as I would have without PSC if I don’t take care of myself. This news left me and my parents feeling pretty down.

That summer, I was offered a chance to attend Camp Oasis, and I’ve been in attendance for four years since, including this year’s online camp. At camp, I met people like me, and we could share stories and experiences with one another. I look forward to camp every year because there, I am not the odd man out, the kid with Crohn’s, the kid who can’t play football, the kid who can’t eat cheese. At camp, I don’t feel different or alone.

I thought I had it bad, but I have a buddy who didn’t know he had Crohn’s until Covid hit. He has been in and out of the hospital for almost a year now, and he lost a lot of weight. But he is a fighter. We all are, and once it gets better, we can do what we enjoy. For Isiah, it’s hunting. For me, it’s playing baseball. For Mike McCready, guitarist for the band Pearl Jam, it’s making music. McCready has IBD, but he still does what he enjoys. He goes on tour for months at a time. If he can do what he loves, we can, too. I play baseball, I play the piano, and I can rap about anyone under the table. IBD isn’t stopping me. Don’t let it stop you either.

If you see IBD as a weakness, change your perspective. IBD isn’t a weakness; it’s what separates us from the rest of the world. It’s what makes us different, unique. It is what makes us special.

I’m JB Lile, and I’m honored to represent the Crohn’s and Colitis Foundation.