Loyola University of Chicago Men’s basketball team had a fairytale season last year. There were countless headlines about the Ramblers being THE Cinderella team during March Madness. 
At the time, Nick DiNardi was a senior walk on and served as a scout to prepare players for each game. Aside from his skills on the hardwood, Nick has battled Crohn’s colitis since he was 11.
The diagnosis came at a time when he was enjoying sports and just being a kid. While playing football, he lost around 25 pounds rather abruptly. Along with weight loss, Nick started feeling extremely fatigued, had intense stomach pains, bloody stool and vomiting. About a year after these symptoms persisted and following several tests and scans, Nick received his IBD diagnosis.
“When I was told I had Crohn’s disease, I was not really sure what to think. I had never heard of it and as an 11-year-old, I really turned to my parents to tell me how to handle it. I tried to continue living my active lifestyle, although many times it was very hard. I felt lonely especially because I felt like I was the only person in the world who had this disease. 
My grade school friends had no idea why I was crying in class, oftentimes teasing me while I was in pain,” said Nick. “My parents and siblings were always there to do everything they could to make me feel better, but I just never felt like anyone related to the pain I was in.”
In the 11 years since Nick received his IBD diagnosis, it took him nine years to encounter another person with the disease. He felt isolated and alone in his journey. These feelings inspired him to create a 501 (c)(3) nonprofit called Bigger Than Basketball (BTB) in August 2018.
“The mission of BTB is to raise awareness and funding for research to benefit individuals suffering from Crohn’s Disease and ulcerative colitis. BTB encourages, educates, and mentors individuals affected by these diseases to achieve their goals while managing their illness,” said Nick.
One of Nick’s main missions is to make those who are diagnosed with IBD have a solid support system. He hopes BTB will serve as a resource of comfort, a safe space for those in the IBD community to share their stories in order to help others directly or indirectly affected by these diseases. His goal is to create a network of support that allows those of us with IBD to take off our mask and be real about your struggles.
“IBD is a beast of a disease. You can have great days where you feel active and energetic, but you can also have days where you don’t feel like talking or even getting out of bed. With the creation of our network, we want to allow people to express what type of day they are having, so others may be able to relate with their current situation,” explained Nick.
“Bigger Than Basketball is truly an exciting new organization, as one of its key goals is to raise awareness in young persons diagnosed with Crohn’s Disease or ulcerative colitis and show they are not alone, there are others just like them who understand and are experiencing what they are feeling, and that they can still achieve their dreams with the proper understanding and education about their condition,” said Dr. Russell Cohen, MD, FACG, AGAF.
As a member of the Board of Directors and Director of the Inflammatory Bowel Disease Center at the University of Chicago Medicine, Dr. Cohen believes BTB is truly a unique way to reach young people who need help, while expanding awareness and funding with the aim to conquer these conditions in our lifetime.
It’s Nick’s hope that BTB’s network will serve as a buddy system and provide a safety net for people to fall back on. Along with joining the BTB network, you can volunteer and attend upcoming events or donate to the cause. Nick is also looking for people to join the associate board, preferably those living with IBD. To learn more, email: info@biggerthanbasketball.org. 
Nick’s IBD has also inspired him to work in the field of medicine, specifically research. He currently works at the University of Chicago with a focus on IBD and Celiac research.
Be sure to show some love to Bigger Than Basketball on social media:
Twitter: BTB_Foundation
Instagram: btb_foundation
Facebook: Bigger Than BasketballFoundation
For me—the past nine months I’ve been incredibly grateful to have another healthy pregnancy, that silenced my Crohn’s symptoms. I’m also celebrating 3.5 years of no IBD-related hospitalizations or ER visits! The cherry on top was the release of Citrate-free (pain-free) Humira this year! After more than a decade of giving myself the painful injection, the new formula has greatly improved my patient experience.
Celebrate the feel-good days and soak up the moments where your IBD isn’t top of mind. You have an innate sense of when your body is giving you warning signs that rough waters are ahead. Be mindful of the inner conversation going on in your head and listen to your gut. Although it tends to be our nemesis, it has a way of alerting us when things are about to get out of our control.
Trust that those close to you love you and appreciate you for everything that makes you, you—including your disease. Show appreciation for your caretakers—those who live with you and are in the trenches by your side, day in and day out. Find comfort in those who allow you to be vulnerable when you need to be. Stop putting effort into relationships and friendships that don’t add joy to your life—eliminate the negativity, cut the fat, there’s no need for people who bring you down or belittle what it’s like to live with Crohn’s or ulcerative colitis.
I hope you take this week to enjoy time with loved ones, relax and find time to care for yourself!
and industrial to have in your personal bathroom. But reviews far and wide have been overwhelmingly positive!
You’ve reminded me of what is possible and what I’m capable of. You’re already an inspiration to me and you don’t even know it.
You and your brother serve as my greatest motivation to push through the pain and be strong. You’ll see how your dad loves and nurtures unconditionally and rises to every challenge that comes my way.
She is a news reporter for a community television station in the Minneapolis/St.Paul area. Sonya is also a Crohn’s patient, diagnosed with the digestive disease in 1985 while she was in college. I’ll let her take it from here:
However, it took me a minute to adapt a positive inner attitude. You see, in public I put on a good, cheerful attitude. There were times when I wanted to crawl up into a big ball and shut out the world. The first few weeks of constantly wearing a backpack full of IV fluids were very hard. I did not like what I saw in the mirror. I was angry at my situation. It wasn’t until I visited a pediatric Crohn’s and Colitis Foundation support group that I changed my way of thinking. Seeing young people living with the digestive diseases, and going about their lives despite their circumstances, motivated me to do better.
Chronic illness, while physically, mentally and emotionally taxing, also has the ability to show us the beauty of the world around us and all that we’re capable of. Instead of thinking how my Crohn’s holds me back—I think about how I’ve lived despite its restraints.
My disease has helped me take on motherhood. It’s made me soak in the feel-good moments, take mental snapshots of the happy days and celebrate the beauty of life. My disease has forced me to press pause when I’m doing too much, it’s reminded me of the importance of self-care and taking time for me. It’s shown me which people are meant to be in my life and which are meant to be in the backstory.
Try having a flare during the worst natural disaster in the history of your country. It happened to me. I survived.
One morning I decided to stop in my GI’s office. He had lost the A/C unit and the office was flooded during the storm. He ordered some labs, an emergency colonoscopy and a few days of rest. I was anxious, exhausted, scared. After the colonoscopy, I was prescribed prednisone for a month and then started Humira.
I hope my experience sheds light on what it’s like for those in the chronic illness community as they endure the repercussions of natural disasters. It’s a critical conversation that needs to happen—preparedness for the IBD community in the face of weather disasters. How can employers, government and society step up to the plate?
Sickness and health truly take on a whole different meaning when you live with a chronic illness. Katy witnessed her husband Vince’s compassion and character while they were dating.
“Operation: Good Health.” She made it a priority to get a minimum of eight hours of sleep a night, as lack of rest tends to be a trigger for her. She was on a mission to hydrate, hydrate and hydrate some more. To set herself up for success and limit any surprise flares, she planned out her meals the entire wedding weekend. For example, she does well with bland foods, like noodles, rice, chicken and (big one) avoiding alcohol. And finally, she delegated responsibilities (aka stress) to friends and family. Katy admits she’s pretty Type A and would much rather do things herself than hand them off. However, she wanted to enjoy her wedding and because of her proactive planning, she was able to do just that!
Reagan, Grayson and Carter may not understand why their mommy is in bed or why she needs to pull over on the side of the road when she gets sick, but Katy’s Crohn’s has taught her children a great deal of empathy at a young age. A few weeks ago, she was in debilitating pain and her nine-year-old offered to make dinner for her brothers. She poured them each a bowl of cereal and that was everything.
While I feel incredibly blessed to be in this position, it comes with its own unique set of worries.
They will live within a home that talks about chronic illness and experiences it each day. Your little ones will learn compassion and perspective before they are even able to truly communicate. If you have a child and chronic illness, you know what I mean.
Whether it’s with motherhood or with living life with Crohn’s, it’s important to remind yourself that everything goes through stages. There are highs and lows, but each moment is fleeting.
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