Parker’s Race – The Finish Line is Just the Beginning

On a journey of 26.2 miles, the first step is the hardest. I shared the first chapter of Parker’s story in May. If you read it you know that the first step for Keri, Parker’s mom, was asking the question “how can I get more involved in his care?” From there Keri and I began building partnerships between her family, the UVM Children’s Hospital and ImproveCareNow. Every step we took was aimed at helping Keri cross the finish line with her relay team at the Vermont City Marathon to raise awareness of Crohn’s disease and funding to support our hospital.

Keri and her sons in their Crushing Crohn's & Colitis tee shirts at the Vermont City MarathonKeri’s enthusiasm and drive to succeed is contagious. Not only is she a busy working mom of two boys, but she committed herself to running a relay in a marathon on top of it all. If you’ve followed ImproveCareNow, you may have already heard the network refer to the African proverb: “To go fast, go alone; to go far, go together.” That proverb feels particularly applicable in this case. This solo sprint, soon became a marathon we took together. It was through partnerships we formed that Keri and I were able to accomplish so much in a very short time. Continue reading

Running with Crohn’s: Drake’s Story

I had always been a sick child. I can remember constantly calling my parents from the nurse’s office. While sitting in the nurse’s office I found myself wondering what was wrong with me, and why everyone in the school office knew me by my first name. I was that kid.

DrakerunningAs the years passed, my illness became an everyday thing. Luckily, for a while, it didn’t prevent me from living a somewhat normal life. During that time, I progressed through middle school and into high school where I fell in love with running, science, and traveling. But as I began my sophomore year, it became clear there was something seriously wrong with my health. I had stopped progressing, in almost every aspect of my life. I was running slower, I wasn’t growing, and I wasn’t gaining weight. My grades dropped because the only areas I was excelling in were hours of sleep and trips to the restroom.

I had been misdiagnosed numerous times, visited the ER multiple times, and was experiencing worsening symptoms, when I was finally offered a colonoscopy.  I was finally diagnosed with a severe case of Crohn’s disease. My doctor told me that I wouldn’t run for any extended period of time, that I would probably never progress, and that I would have limitations for the rest of my life. I decided that was not an option.

Due to the lack of pediatric gastroenterologists in my home state of West Virginia, I made the decision to transfer to Cincinnati Children’s Hospital. As I entered the IBD clinic for the first time, I remember my mother worrying aloud about my health while I kept asking myself the same question over and over again: will I ever run again?

Before I knew it, I was in an examination room where I met two of the most influential people in life. Dr. Shehzad Saeed and Lee Beck, a dynamic duo who had me on the right treatment plan in no time. Together we discussed and set goals for what I wanted to accomplish as we created my treatment plan. The most important goals on the list were to have me running again, and living a normal, healthy, and happy life. After a year that included hospital stays, steroids, infusions, tests, and lots of hard work, I achieved my goals.  Sure there were bumps in the road, but as all runners know…slow and steady wins the race.

Now that I am healthy, I have set another goal for myself. I want to show patients with IBD that a normal life that includes athletics is possible. I consider myself very fortunate to be able run at the collegiate level and believe that running is an important part of my treatment plan. Just because I have a disease doesn’t mean I should live with limitations. I am running with Crohn’s disease in my life, rather than letting the disease run my life!

ImproveCareNow Registry (ICN2) Provides Insight into Crohn’s Disease Complications

Perianal disease is an important complication of Crohn’s disease in children. In May at Digestive Diseases Week 2015, a meeting of nearly 15,000 gastroenterologists from around the world, Dr. Jeremy Adler (@jeremyadlermd) presented research investigating instances of perianal disease (perianal fistulas, fissures and other perianal lesions) in pediatric Crohn’s disease, using data from the ImproveCareNow pediatric IBD registry (known as “ICN2”).

Identifying Perianal Crohn's Disease FINAL Continue reading