Tell us who you are and what you do for a living?
I’m a young professional in Toronto and I’m currently working at a digital agency as a program manager. I also manage an online awareness campaign called Uncover Ostomy.
How did Uncover Ostomy start?
Uncover Ostomy started as a marketing campaign I came up with in my grade 12 media class. It really came alive when I was approached by the founder of an organization called IDEAS (Intestinal Disease Education and Awareness Society). He saw what I was doing and wanted to work with me to create something, because, at the time, there were very few organizations that were trying to talk about ostomies in a positive light.
So we came together, took some pictures and built a website. Somehow I started blogging about my life, people liked it and I’ve been working on the project ever since.
For those that don’t know, want to explain what an ostomy is?
An ostomy is a surgically created divergence that reroutes a person’s intestinal system or bladder system. So much of their intestinal or bladder system is taken out that it can’t be reconnected and the surgeon has to divert it to a part of the body where the individual wears an external bag.
Because of Crohn’s Disease, I had have my intestinal system rerouted. The doctors took out all of my colon and some of small intestine and gave me what is known as an ileostomy.
The procedure saved my life. I was going to die from Crohn’s disease if I didn’t have the surgery.
Can you talk about your history with Crohn’s?
When I was eight years old, I became sick quite often. I often had stomach aches and I lost a lot of weight. My mother took me to my doctor, who then referred me for tests at SickKids Hospital, and, by the time I was nine, I had been diagnosed with Crohn’s disease. My uncle, my dad’s brother, had been diagnosed with Crohn’s when he was younger, so we weren’t surprised; the disease is hereditary.
I was stable enough to go to school and live a semi-normal life between the ages of 9 and 11. Unfortunately, the summer going into grade 7, I came down with a stomach flu that triggered my Crohn’s. I was hospitalized because I was losing a lot of blood and because I wasn’t able to eat.
I was stuck in the hospital for nine days. That was the start of my two year stay at SickKids Hospital.
I was was in and out of the hospital—though mostly in—for the course of those two years. I had multiple tests done and I tried multiple different diets. One diet had me only eating things that were brown and cooked (laughs). For four months, though, I had no food at all, and so I had to get all my nutrients through an IV machine that I had to bring back home, but even with an IV machine I ended up back in the hospital.
Besides being on a lot of medications, I had to go on heavy narcotics because the pain I felt in my intestines was excruciating and prevented me from sleeping. I was weak and had no energy to get up from my hospital bed, or even open my eyes some days.
At the age of 13, I remember a surgeon coming in to speak with me. Life was a little hazy during that time, as I was so exhausted and drugged, but I remember the we had conversation clearly. He told me that the doctors had tried everything, but there was nothing left to do. I needed to have my colon taken out, or I was going to die. I vividly remember being like, “Okay, I don’t want to die. I guess that’s my only option” So I went through with the surgery.
Talking to you about this now it seems like you’re at peace with the whole thing.
I’m not not happy. I wouldn’t be who I am today if that hadn’t happened. It’s funny, when people ask me what I was like when I was a child, I tell them that I was very shy and quiet. I was not very personable and I had trouble making friends. After the surgery some of normalcy returned to my life, and I feel like that’s when my life started. In a way, I felt like I had earned my life.
Why do you think it took so long for someone to start talking about ostomies in a positive light? Why do you think your message has resonated with people so much?
I’m not the first person to try to talk about Crohn’s disease in a positive way.
In terms of the ostomy, though, there was never anyone that came out of the woodwork and said, “This is my Ostomy and I’m totally okay with it.” No one was doing that and, because of that, everyone’s perspective of the procedure was negative.
I don’t want to say people were afraid, but it seems like no one was willing to be the person to come out and start the conversation. There were forums and groups that were supporting each other online, of course, but they were kept within the ostomy community. I couldn’t find anyone that had come out to the public and said that their ostomy had saved their life.
That’s why I started Uncover Ostomy.
For those that come to you seeking advice, what do you say to them?
I have a lot of people come to me that say that they may need an ostomy and that they’re afraid. Most of them don’t know what to do, and often times they don’t have someone to turn to for advice so they they look online and find me.
When I get asked what I recommend, I tell them that they don’t have to have surgery, but that, in my experience, having the surgery changed my life for the better. I didn’t have a life while I was sick: I could barely eat, I barely opened my eyes and I felt so isolated.
I also tell them that I’m fortunate to live in a city and community like Toronto where people accept each other for who they are.
Finally, I tell them that as long as they’re happy with their decision, and that as long as they’re happy to be alive, then that’s all that that matters. If someone else doesn’t want to be around them because of a surgery they’ve had to get to survive, then that’s not someone they want to be around, anyway.
Is there a local neighbourhood you identify with? If so, what is it about that neighbourhood that inspires you?
I identify with Liberty Village, which is where I live. There are a lot of young adults that live here. It’s also quiet but still downtown. If you want to actually go downtown, then it’s really easy to do so, and everything you need is close by.
What do you love about Toronto?
I love the amount of opportunity there is in the industry I work in. If you’re in the digital space, then Toronto is where you want to be if you’re living in Canada. I grew up in Toronto and so all my family is here, and being close to them is important to me.
I also like that it’s like New York, but not as gross or aggressive—I used to live in New York, so I think I can safely compare the two.
I don’t like the politics right now. But other than that, I love that you can walk into a different country based on the neighbourhood you walk into.
Outside of your work and this organization, what are some of the things that motivate and inspire you?
To be honest, I don’t have a lot of time for others things. That said, my passion is acting, and any chance I get to do something like that excites me. It’s not the only thing that motivates me, but it is a deep part of who I am.
Other than that, I’m always like trying to find the next thing to work on, accomplish or build.
What’s next for you professionally and or personally.
Professionally, I just got a new job at a digital agency called Spark Growth. I love it there and I think I’ll be able to grow with this company for a while. I am also trying to build something with my boyfriend. Details to be disclosed at a later date!
Personally, I’m happy and excited to go where life takes me.
Igor Bonifacic is the managing editor of Toronto Standard. Follow him on Twitter.