Monday, July 15, 2013

Tri-ing for a Cure: Katie's Crew Tackles TriRock Clearwater!!

Perhaps you read my last blog post about my obsessive focus on ensuring that my little miracle baby does not get this brutal disease. At almost six months, we are still breastfeeding, largely because this practice reduces the incidence of Crohn's Disease and Ulcerative Colitis by close to 40%. Sadly, it's not a foolproof method. Considering Eva's genetic predisposition to this disease, I often feel my heart skip a few beats throughout each day as I ponder the very real possibility that she might too have to fight the same battle as her mother. I can't say whether Eva will be faced with these challenges, but I can say that Crohn's Disease and Ulcerative Colitis are affecting more and more children each day and pediatric diagnoses are on the rise. Breastfeeding my own child is not enough.

My husband, Billy, and I have decided that we need to help ALL of the children and adults affected by these diseases. We need to make sure that no more little boys and girls spend their days hooked up to IVs in hospitals. That no more young adults need to take semesters off for surgeries. That more men and women can start families and not have to fear about whether or not their children will fight a long and brutal battle with their health. We need more effective treatments. We need a cure.  

Billy and I are training for the TriRock Triathlon in Clearwater, Florida on November 10th to raise money to fund vital research for Crohn's Disease and Ulcerative Colitis. 82 cents of every dollar we raise will go toward this cause. If you're unfamiliar with these digestive diseases, here is why our mission is so important (and my story is just one. There are more than 1.4 million more. I'll try my best to keep it short):

In 2002, at the age of 17, I walked through the doors of my high school and crapped my pants. That is probably cause enough to throw a dollar or two our way, but I can give you quite a few more reasons. I kept crapping my pants for the next ten years. At work. At school. In the car. At the grocery store. You get the idea. Not only could I not control my bowels, these episodes were excruciatingly painful (both physically and emotionally) and would occur up to 40 times each day.

I was suffering from severe Ulcerative Colitis, an inflammation and ulceration of the large intestine. After years of hospitalizations and potent medications that caused me permanent kidney damage, dysplastic moles and arthritis among many other things, I was put on a drug called Remicade that was infused through an IV over the course of several hours. In February of 2011, my body went into anaphylactic shock during a Remicade treatment. I had become allergic to the last drug that was available to me. 

In March of 2011 I underwent a five hour-long surgery to remove my large intestine and rectum. My surgeon also created a pouch out of the end of my small intestine that would act as a substitute large intestine. An ileostomy was also created to allow the pouch to heal over the next few months. In June of 2011, I was faced with a second surgery to reverse the ileostomy so I could live with my new pouch. While I am grateful on so many levels that these surgeries were available to me and have allowed me to live a healthy life, it has been a very difficult road and living without a large intestine is far from ideal. I spent almost two months in the hospital in 2011. After my first surgery I had an extensive Portal Vein Thrombosis requiring months of anticoagulation. I also suffered an ileus and bladder infections. After my takedown surgery, I was re-hospitalized due to an abscess at my old ileostomy site and, in November of 2011, I needed a third major surgery due to the scar tissue that had developed from the first two surgeries. It's been a long road. And it's a road that will never end for me.

In November, Billy and I are running a course in Florida that does have an end. As I cross that finish line, I will know that I have won. It has been more than ten years since my diagnosis and since I have been healthy enough to even dream of completing such a race. Because of the research funded by the CCFA, these surgeries have brought me to a place where this is not a distant dream, but a reality. Let's make sure that the children diagnosed in 2013 don't miss out on decades of their lives. Help us run. Help us heal. Help us cure. Donate at

A big thanks for helping us along this course to a cure!!!!