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.
I 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
When 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.