I am 34 years of age and I have been living with Crohn’s Disease for nearly 19 years. 5 years ago, I made the decision to have surgery to remove what was left of my colon and I was given an ileostomy (a procedure where the small bowel (small intestine) is diverted through an opening (a stoma) in the stomach). It took me 14 years to get to that point and it has transformed my quality of life. Prior to this I suffered years of trialling different medications, different clinical trials, and enduring all the associated side effects. I lost my teen years and most of my twenties to Crohn’s Disease but the last 5 years have given me a new lease on life and I am forever grateful to those who got me to this point.
When I was approached to take part in the Genuity Science study I didn’t hesitate. While I had been a part of a clinical trial before I understood this was different as ultimately it wouldn’t benefit me directly. I knew the purpose of the Genuity study was to further genomic research into IBD and that the blood samples and information I provided would go towards potentially helping more IBD patients in the long run. If I can stop just one person in the future from going through the pain and heartache that I (and my family) went through for 14 years then why wouldn’t I do it? I look to the future and the benefits this research might provide to IBD patients. I have a niece and nephew and if they are ever diagnosed with a serious disease I hope that the research being done today would mean their life with an illness would be easier than mine was.