Crohn's and Colitis Awareness Week!

In honor of Crohn’s and Colitis Awareness week I decided to share my personal story for those of you who haven’t had the pleasure of hearing me constantly joke about Crohn’s, my bag, medications, and everything else that goes along with living with IBD. 

When I was 10 years old, I was diagnosed with Crohn’s disease. In all honesty I don’t really remember much of how this made me feel at the time. I remember being terrible at attempting to swallow pills (I haven’t gotten all that much better), making way too many trips to the bathroom during a school day, and being the tiniest person in fifth grade. 

By middle school I was in full swing, gaining weight, taking over ten pills a day, and trying to be a “normal preteen.” Middle school was pretty easy going for me. Yeah I was constantly changing pills and attempting to regulate my weight but looking back on it now, I was lucky. Many people have a much harder time right after diagnosis. High school is when things decided to get difficult. 

Freshman year was not just the beginning of high school, but the beginning of the real journey I’ve had with Crohn’s. I left an appointment in late October in tears, I was going to start an IV medication called Remicade. I wasn’t necessarily scared of the IV (although I am still not used to needles), I was scared that I was actually sick. People don’t just go to the hospital once a month for a 6 hour long IV infusion when they aren’t REALLY sick. I had to face that my body wasn’t just that of a 14 year old girl, which can be hard enough, but the body of a 14 year old girl with Crohn’s disease. 

Lets jump ahead to the end of freshman year. Remicade failed and I left another doctors appointment in tears, told I needed to go home and pack and meet my doctor at the hospital to be admitted. I had heard stories of patients being admitted, not being able to keep hydrated, eat, gain weight. I didn’t think I was that sick. But I was. I weighed 76 pounds when I was admitted. Looking back at pictures now I can tell how sick I was. Skinny, pale, with sunken eyes, at the time none of this registered. 

(Freshman year)

After a 17 day stay at BBCH I was sent home with a port in place in my arm for IV nutrition and the hopes that letting my guts rest would help put me back in remission. It didn’t work. By November sophomore year I opted to try surgery. I had a diverting ileostomy. This means that my colon (otherwise known as the large intestine, the part that was really sick) was separated from my small intestine and stapled off. My small intestine was brought to an opening in my skin and I had an ostomy bag to collect the stool. This was amazing. I was given my life back. I started dance again, and skiing. I was Holly the Teenager, not Holly the Sick Kid.  

In March I had surgery to reverse it. My colon had had time to rest and heal itself, hopefully meaning that reverting my system back to normal would work again. It didn’t. 6 months later I was back to where I started, sick, in the bathroom 15 times a day, and uncomfortable. I chose to have the procedure again right before my senior year, this time indefinitely. It was the only thing that had ever given me the quality of life I wanted, and the only thing I knew would work for sure. It was great. Again I was back to dancing and living life as a teenager. 

This worked great until my Freshman year of college when my large intestine became inflamed again despite being unused, something called diversion colitis. I opted to take a big step and have it removed all together. December 16th will be my 2 year anniversary living without a colon. I can without a doubt say that these have been the best two years of my life, and most of that is due to Crohn’s disease. 

I have hiked the Inca Trail in Peru to Macchu Pichu, I’ve been to Spain, I am spending a semester in Maryland studying child life, I am part of CCFA’s National Council of College Leader’s, I have had the chance to volunteer at CCFA’s Camp Oasis, I have volunteered at many events supporting Crohn’s and Colitis Awareness, I am putting on a program next week to teach others about this disease that has changed my life. Okay so high school was hard, but I have gained so much. 

Keep spreading awareness to help others who are not as fortunate and to help so that those in the future can avoid the difficulties so many have had to face! 

(With part of the NCCL in Boston at our last retreat)