I was diagnosed with Crohn’s disease in November 2011 when I was 8 years old. My parents knew something was wrong with me because I began losing weight. My pediatrician recommended I see a pediatric gastroenterologist. After an endoscopy and a colonoscopy, my doctor figured out what was wrong - I had Crohn’s disease. Immediately I was put on many different medications. I felt good for about a year and a half.
In the summer of 2013, it began to go downhill for me. I constantly had pains in my stomach and did not want to eat. After another endoscopy and a colonoscopy my gastroenterologist suggested ileum resection surgery. My surgery did not work out as planned - when the surgeon opened me up she felt it was best to leave the ileum alone and treat it with stronger medications. We tried the stronger medications for about six months but I was only getting worse. My parents decided it was time to look for another pediatric gastroenterologist. Now it was June 2014 and I was 12 years old and weighed only 48 lbs. I was so weak I couldn’t even go to school. I missed the last 33 days of 6th grade and I even missed my dance recital.
In mid-June we found the perfect doctor who sent me for numerous tests and she found a fistula located near my colon. Then I was put on, an infused medication that can only be done at a hospital. This helped my pains, but I still was not growing or gaining weight. All through the summer, I was in and out of the emergency room. October 4, 2014 was my worst night ever: I was vomiting all night every two hours and I couldn’t even hold water down. My parents knew they had to take me to the hospital and when we arrived at the ER the doctors suggested a CAT scan. When the results came back we found out that I had a blockage in my transverse colon, no food or liquid was able to pass and it had to be corrected with surgery and a temporary ostomy bag. My body had to heal for about 12 weeks and then they were able to perform my reversal surgery to remove the ostomy bag. I had my reversal surgery and it was a success.
I am currently in remission and feeling wonderful. I am still on medicine and have to go to the hospital every 8 weeks for treatment. Last year my family and I decided to join the CCFA walk and we are so glad we did. I had a great time at the walk and I met so many people including one of my best friends, Gabrielle Siegel (who also has Crohn’s). This year we decided to form a team together. Raising money for research and awareness can help so many people. Not many people are familiar with Crohn’s disease but I am hoping to change that.