Marathon #54 – 26.2 for Krystyna
Endurance exercise has always been my escape, it all started with swimming starting in preschool. I never competed, but found joy in the escape of the pool and have always found solace in the water. When my cousin was diagnosed with cancer, I started focusing on cycling as well, riding 50 miles multiple years supporting cancer research in her honor with my family. The pandemic restricted my ability to swim, for the first time in my life I couldn’t get the peace I was looking for in the water, so I started to run. From exploring deeper in these three sports, I found my escape, my peace, my feeling of being a normal person, not someone who has battled IBD for almost 20 years, spending more time in the hospital than out in many of those years. No one can look at me and know my experience, I am just another athlete.
At 15 I was diagnosed with Ulcerative Colitis, though my symptoms started at a very young age, the doctors presumed I had these issues my entire life. Starting to see blood in your stool as a teenager is terrifying, life is hard enough learning how to grow up, never mind throwing internal bleeding into the mix. I remember the moment vividly and am grateful that my mom was close by to run to. 5 months later I had my first colonoscopy and was hospitalized on IV steroids and pain medicine. My parents have been there for me every step of the way, being realistic to what was happening, but also staying positive. That first hospitalization was a preview of what my battle with IBD would be. After all medication options had been exhausted and I had become steroid dependent by 21, I had a full colectomy and my JPouch was formed in two surgeries where I had complications and needed IV nutrition (TPN) through a PICC line. I had a year of health, and then horrifyingly my symptoms returned and I was re-diagnosed with Crohn’s Disease.
I started on IV infused medication and quickly transitioned to being a patient at the Mayo Clinic when I rapidly failed that medication. The next few years I battled to gain remission, switching medications, being hospitalized, needing an additional PICC line for TPN therapy as my bowels needed rest to try and get the inflammation under control. I had a temporary ileostomy placed and spent 54 days in the hospital battling complications after another 2 surgeries book-ending that hospital stay. My inflammation was still not under control, so my journey brought me to Cleveland Clinic where I needed 6 surgeries in 14 months to remove more inflamed intestine, fix a bowel perforation that put me in septic shock and landed me in the ICU for multiple days, another PICC line and TPN therapy were necessary to keep me alive. I celebrated my 31st birthday with all of that behind me, finally finding a rhythm of remission.
Today I am living the healthiest life that I never dreamed possible in my twenties, giving me the opportunity to participate in Team Challenge Cycle and meet Marc as my coach for my first century ride. I still have inflammation that can’t be completely healed with where medication stands today, but my quality of life is the best I have ever had. Meeting Coach Marc has truly been life changing for me, his support gave me the training and confidence to complete my first century on a bike with other patients like myself. Without the Crohn’s & Colitis Foundation, my family would have been lost at the time of my diagnosis with no one else in my family having IBD, we had no knowledge of these diseases. The research and patient resources that are supported by the Foundation have impacted me and my family throughout my journey. I am grateful to this mission that Coach Marc started with 26.2 For You and am honored that he is running for me. The Foundation will continue to be a pillar of support for me as my IBD journey continues and advances in treatment happen.
Marathon 54 – Recap