Band of IBD brothers: The power of paying it forward

Through the years, I’ve come to notice that much of the IBD advocacy space is female dominated, even though according to the Crohn’s and Colitis Foundation, men and women are equally likely to be affected. While there are some vocal and passionate men who share their patient journey, I’ve always felt there’s a need for more.

justin 3I recently connected with Justin Birnbaum. He’s a 26-year-old grad student at Northwestern University who was diagnosed with ulcerative colitis in 2015. He underwent a Colectomy in 2016 and six surgeries later, still has an ileostomy. Justin is studying journalism. As part of a school project, he profiled fellow IBD warrior, Robby Denien. Robby has served as a mentor to Justin and helped him take on his disease. This week—a guest post by Justin—about the benefits of their brotherhood, and how their bond has inspired him to give back to those in our community.

On occasion, I remember picturing what Robby Denien looked like.

Despite being in contact for almost three years, we had never met in person — communicating primarily by email and text message. I connected with Robby through a friend from college. She had come to visit me in the hospital and mentioned that her cousin was going through the same thing, a few months further along.

This past summer, being that we were both located in Chicago, we arranged to finally meet. I wanted to share Robby’s story, partly because of how remarkable it was and partly because it mirrored the very same struggles with ulcerative colitis that plagued my life.

After that meeting, there was one observation that stuck with me above all else — he looked healthy. J-Pouch surgery does not work out for everyone. It has a high success rate, but people are still condemned to live with alternative solutions such as a permanent ileostomy.

As someone who already dealt with failed surgeries and remains skeptical about finding a resolution to all of this, it meant a lot to see Robby thriving. He represented what my future could be like.

Leaning on others for support

justin 1When I was diagnosed, my mother and I were terrified. We jumped at the opportunity to speak to someone who knew the ropes and could safely tell us there was light at the end of the tunnel.

And that’s how it all began. Days before my third, and what should have been my final surgery, I sat down with my mother and composed a crisp 250-word email. Twelve hours later, Robby responded.

Robby lives a full life, working full-time as a music teacher. He had no obligation to answer that quickly or respond whatsoever. But he understood what I was going through. In my first email, Robby could see how paralyzed I was with fear of the days to come. He willingly opted to be a mentor to me. Why? Because someone had chosen to do the same for him during his tough times.

“When you meet somebody or have a friend who has ulcerative colitis or Crohn’s, there’s almost like a tight brotherhood of sorts,” Robby said.

Life after surgery with IBD

Having surgery is a tough experience to bear. In the case of IBD patients, one of the biggest concerns can be wondering what life will be like after going through all of this. In the first week of our correspondence, I sent him a long list of questions and he responded with a 2,000-word email. His words and his experiences helped calm my fears.

It was more than I could have asked for – a person, with IBD, to bounce any question or idea off of. Someone who was willing to tolerate my craziness and help me come to terms with what would be my new normal.

Paying it forward as a mentor

It also taught me a valuable lesson. When dealing with a life-altering condition like IBD, the best thing you could do for those around you is to share your knowledge and to pay it forward. Ever since Robby became a mentor of sorts to me, I have resolved to do the same for anyone who will allow me. And by doing so, I’ve made some great friends.

It’s always nice to have others to commiserate with when IBD is giving you a tough time. It’s even better when that person knows exactly what you’re experiencing. IBD can have such denigrating effects on your life that it’s easy to ball up and shut out the outside world, but that’s the not the right way to go about it.

We have to stick together. We have to continue to fight. And most of all, we have to keep our heads held high even when this disease brings us down to our darkest of days. That’s what this brotherhood is all about.

Bigger Than Basketball: Taking IBD support to new heights

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. natalie hayden 5At 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. nick and mom, nick sickMy 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.natalie hayden 2

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. natalie hayden 4

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

First EVER Lights, Camera, Crohn’s Instagram giveaway

Hey guys! Big news to share. I just launched the first Lights, Camera, Crohn’s giveaway on Instagram. As someone who’s battled Crohn’s disease for nearly 13 years, I’m well-aware of how far a simple act of kindness can go, whether it’s from a friend or a stranger. That’s why—I’ve teamed up with other positive forces for this special giveaway. Here are the prizes:

instagramgive2A cozy, lightweight hoodie from @thegreatbm that reads “IBD Can’t Stop Me” on the front and “Ask me about my resilience and determination—where I find my strength—what motivates me to keep going and reminds me I can handle this pain—why I refuse to quit and what I’m doing to overcome my IBD” on the back. I own this hoodie, it’s comfy and so empowering.

-Pretty earrings that go with any outfit from @rockswithsass. instagramgive3The store owner battles Crohn’s disease herself and donates a portion of all proceeds to the Crohn’s and Colitis Foundation!

-Stoke quotes from a childhood friend who’s dedicated her life to motivating others through messages of positivity. @marliwilliams instagramgive4has donated 100 uniquely designed quotes geared towards helping you find and live your purpose everyday.

 

 

 

Here’s how you enter the contest on Instagram:

  1. Like the post on my Instagram (natalieannhayden).
  2. Make sure you’re following me @natalieannhayden, as well as the following pages:

@thegreatbm

@rockswithsass

@marliwilliams

  1. Tag your besties or some fellow IBD’ers in separate comments. Each person you tag counts as an additional entry. Good luck!

instagramgiveThe giveaway ends Saturday, April 21st at 11:59 PM MST. Winner will be announced on Instagram Sunday, April 22.

This is my way of saying “thank you” for all your love and support through the years. Simple acts of kindness (especially on days when we aren’t feeling our best)…can make all the difference. If you’re interested in donating to a future Instagram giveaway, shoot me an email: natalieannhayden@gmail.com. I’d love to collaborate with you to make someone’s day!