I was 8 years old when I started noticing symptoms of what would eventually be diagnosed as Crohn's. I had stomach and health issues for a while, but we really knew that something was going on when, one day, I weighed myself and I had lost five pounds from the last time I got on the scale. An 8-year-old should not be losing that much weight in a short amount of time. It's not as if nobody else in my family had noticed that something was wrong with me. But that weight loss was sort of the last straw, I guess.
I wasn't diagnosed with Crohn's until I was 9. But because my uncle had it -- he was diagnosed when he was 13 -- I knew it was going to be with me forever. Of course, I'm not sure that a 9-year-old has a grasp of what a chronic illness really is, but I felt like I understood it. I knew it was serious, that's for sure.
I played a lot of sports when I was young. I was on a tee-ball team, I played soccer, and we did a lot of dance and stuff like that. But when I started getting really sick, of course I stopped doing all of that.
Later on, I was in the hospital for about two years between the ages of 11 and 13 -- that was roughly two years of just lying down -- so I lost all my muscle tone and my body became unbelievably weak. It was awful. I didn't really do anything active until I went to university, and that's when I started going to the gym and actually working out. Now, I work out every day. In fact, over the past year I've done the Insanity Workout twice. I was in the Toronto Star, on the cover of the paper's Life section, for having done that workout. It was definitely an accomplishment, considering the shape my body was in when I was younger.
I started the Uncover Ostomy awareness campaign http://uncoverostomy.org/ in 2009. It's not really a charity. We never made it our focus to ask people for money, because our main goal was to help people share and talk about ostomies. It was my brainchild. I was in my senior year of high school, in a media class where our final project was to create a PR campaign for something we cared about. So, being the only person with an ostomy in the entire school, I wanted to be the kid who talked about it. I created a fictional campaign, where I was covered in a sheet with my ostomy showing. The summer after high school, I brought the pictures with me to an ostomy camp, and there was a volunteer there, Rob Hill, who runs the Intestinal Disease Education and Awareness Society, or IDEAS. When he saw my campaign he said he wanted to do something with it, but I didn't hear from him until I turned 19, when his organization and I put Uncover Ostomy together. Last year I ended up taking it over again. Now it's just me running it. It's been an amazing, amazing experience.
There are two pieces of advice that I'd give to anyone diagnosed with Crohn's or facing an ostomy. First, try and stay open to possibilities that you never thought you would need to experience. I found after I had my ostomy that my doctors had recommended surgery to my parents for a year, but they kept saying, "Over my dead body. My kid is not going to have a bag." They didn't really understand what was at stake. I went through another year of being sick and in the hospital and finally the doctor said I needed the surgery, or I was going to die. When I woke up from surgery and was like, "Okay, this is the only option I had, so I'm okay with it," then my folks knew that they needed to be okay with it, too.
Secondly, the only way you can live a good life with an ostomy is accepting that you have one. I know so many people with ostomies who think it's the worst thing in the world. They hate it and they spread this negativity to other people who don't necessarily understand what an ostomy is.
I make jokes about it. I have to, or I'll go nuts. I'll kid my friends, telling them, "Come on, just get a bag. That way you can always be on the go!"