Interview with Nicholas Uzl

Interview with Nicholas Uzl

By: Justin Vandergrift

In May I met Nicholas at IBD 2020 from the CCFA, he was one of the voices of the patients. Throughout the conference Nick and I shared about our common experiences and what he is doing with his life.  His story is very compelling and he agreed to do an interview for EBK.  Throughout Nick’s story you will find those ‘silent gems’ that we can all use.

Q: When and how were you diagnosed with IBD?
A: I was diagnosed when I was in college. I began having symptoms in January of my freshman year, and things got progressively worse throughout the rest of the semester. At this point I was on the track and cross country teams and the stress of being a college athlete as well as the less than stellar food (food on college campuses typically is not very IBD friendly) only exacerbated my symptoms. As my symptoms grew worse, I became more and more frightened because I didn’t know what the cause of my symptoms were. I was finally able to visit a gastroenterologist after my freshman year ended, and I was given a diagnosis of Ulcerative Colitis. I was quickly put on medication and my symptoms began to improve (I was also eating a better diet as I was back at home). However, this improvement in my symptoms didn’t last long. As soon as I started back in the fall for my sophomore year, my disease began to be more active. The symptoms got even worse than they’ve ever been and I was forced to leave school in October, to return home to try to get my disease under control. As a result of IBD I was forced to give up my running career…..with my disease so active, I just was unable to continue to maintain such rigorous physical activity. At this point my diagnosis was changed to Crohn’s, which was frustrating for me because I was just getting used to the idea of having UC. I remember going through much the same emotions I went through after the UC diagnosis. My first step was to learn as much as possible about the disease, I thought knowledge was power, so the more I know the more proactive I can be about managing my disease. Then I would get angry and scared. I was angry because I thought “why me?” It was just so unfair that I had to leave college and stop running competitively….at the core, it just didn’t make sense to me. I was also scared….I was scared because I read about how the disease can be so destructive and the side effects from medications can be severe. Fortunately once we knew the correct diagnosis, I got on the right medication and was able to start back up in college that January, albeit at a different college, one that was a little closer to home. In short, IBD really disrupted my life, and I wasn’t sure what I was going to do or if my life was ever going to be the same. And to be honest, my life has not been the same, but it has changed in so many positive ways as a result of my diagnosis and in ways I never could have predicted.

 

Q: What was your darkest moment with IBD?
A: I think my darkest moment was right after diagnosis, when things were so uncertain and I wasn’t sure if my symptoms would ever get better. The uncertainty of the disease is by far the worst part…..it can make it hard to lead a normal life when you don’t know if you’ll be in the hospital tomorrow or next week. But you can’t let that uncertainty define you. My proudest moment was probably being involved with CCFA’s Day on the Hill. I had the opportunity to visit with legislators and communicate to them the importance of funding for medical research. At Day on the Hill I felt empowered and knew I could take control of my disease.

 

Q: What has your treatment path looked like?
A: I have been incredibly fortunate in my treatment path….more so than many patients. When my diagnosis was UC, I was on prednisone and asacol. Oh how I hated prednisone, but luckily I had a great doctor who was responsive to my quality of life needs, and prednisone certainly hampered my quality of life. But after my diagnosis changed to Crohn’s I was put on Imuran and have been on it for about 7 years. This medication has worked wonders for me and I have been mostly flare free after getting on the proper medication.

 

Q: What is your life like outside of IBD?
A: My life has been very fulfilling outside of IBD. That is the biggest message I want to communicate to other patients: you can have a very fulfilling life despite having IBD. IBD is a part of you, but it does not have to define you. I finished college and went on to law school and just graduated last month. I have since moved to Washington DC to start a new job. I also am engaged to a wonderfully supportive woman, which has been very important to helping me manage my disease. I am also back to running and have run in several half marathons now.

 

Q: What have you done to raise awareness?
A: What have you I have been very active in the IBD patient community in an effort to raise awareness. I served on the CCFA’s National Youth Leadership Council (which has since been renamed the National Council of College Leaders). The goal of the NYLC was to help provide programming for college aged patients with IBD. I have also been involved in Team Challenge, a half marathon training program, and Take Steps. I also now serve as a patient representative on an FDA Advisory Committee. But the most important awareness I have done is informal and unofficial. The best thing we can do as patients is to be open to talking about IBD with our friends and family. If we can explain to others what IBD is, and how it affects us, we can raise awareness and ultimately make patients’ lives easier.

 

Q: If you could tell a newly diagnosed child and family anything now, what would it be?
A: The one thing I would tell a newly diagnosed patient is “everything is going to be okay!” An IBD diagnosis does not mean your life is over, it will just be a little bit different now. The majority of patients do well once they’re on proper medication, and you can have a very full life with IBD. Try to learn as much as you can about IBD and meet some other patients. Consider attending Camp Oasis, the camp exclusively for kids with IBD….it is comforting knowing that there are other kids like you, and you can learn a lot from fellow IBDers.

 

Q: What are you doing now?
A: As for what I’m doing now… I’m starting a new job and am very excited for the new adventures DC will bring!

 

My biggest takeaways from your story is how everything is going to be ok, and the importance of having supportive people close to you. A strong support network will calm the storm and provide light in the darkness.

Thank you for your story Nick and the guidance you provide to the newly diagnosed. Regardless of the age at diagnosis, everyone shares the same feelings at one point or another. Your commitment to pushing IBD to the margins is one that everyone needs to embrace. Do not let a chronic condition, regardless of its label, define who you are.

You are bigger than the label – Do, Be, Achieve and Inspire.

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