Zumbathon for Crohn's and Colitis

Honored Hero: Tyler

Three weeks after I was born, I started vomiting.  Following emergency surgery it was discovered that my intestines were not formed correctly.  While we did not know it at the time, this was most likely my first encounter with Crohn’s Disease.

Fast forward 5 years. I became very sick.  After initially contracting strep throat in addition to daily fevers of 102 or higher, an abdominal CT scan showed an abscess that needed to be operated on.  Following that emergency surgery, I was sent home, but a week later was rushed back to the hospital with severe stomach pain.  Because of this, I had my first colonoscopy, after which it was confirmed I had Crohn’s Disease. 

The next 8 years consisted of surgeries, as well as sicknesses due to my immunosuppressed body.  At 11 years old, I had to learn to pass a nasal gastric tube daily in order to get additional nutrients to help with growth.  I tried medication after medication, most of which stopped working within the year.  In July of 2012, I had surgery to place a g-tube in my stomach which meant I couldn’t eat – at all!  I was only 13 years old and spent most of that summer in the hospital or the house.  After a month, my symptoms diminished and I was put on a very limited diet.  For Christmas, I got the best present ever; I was able to eat anything I wanted!  Since then I have been doing well.  I still do nightly feedings, and have been hospitalized twice, which is nothing compared to before!

In, July I decided to not only be an honored hero this past summer but to participate in my first half marathon.  I did my best to train but was side lined two weeks before the race with a fistula due to my Crohn’s disease and had to have surgery.  Even though Crohn’s disease kick me in the “butt” I completed the Jamestown ½ marathon two weeks after my surgery! Take that Crohn’s!

Unfortunately, I am currently having a Crohn’s flare, I lost 8 pounds in a month and now have to do feedings through my g-tube during the day as well as overnight.  I also have to add another shot of my medication which now brings me to two a week.  The doctor is hoping as am I that it will fix all the inflammation throughout my throat, stomach and intestines before I get worse.

Unfortunately, with all that the doctor has done with my current regiment, I have only gotten worse and have been put on steroids to control the inflammation until I saw a new doctor at Mt. Siani hospital.  I will be starting a brand new medication called Entivyo which will be administered by IV infusion as well as being fed 2900 calories through my g-tube for about 15 hours per day to help me to gain weight and grow to my full potential.  As always I try to stay positive, be brave and take it day by day. It’s all I can do!