What were the circumstances of your Crohn’s diagnosis and subsequent ostomy surgery?

At eight years old, I started to get stomach pain, refused to eat, and eventually realized I had lost five pounds. Without a second thought, my mother took me to the doctor. After numerous (and unpleasant) tests, I was diagnosed with the disease.

After coming down with a major stomach flu at age 11, my Crohn’s flared so badly that it put me in the hospital for almost two years, full of horrible treatments and complete bowel rest (no food!) until I was told that if I did not have ostomy surgery, I would die.

Had you ever heard of Crohn’s disease or ostomy previous to your diagnosis?

Yes — my uncle had been diagnosed with Crohn's as a child.

What were the biggest challenges you faced in school growing up with both Crohn’s disease and an Ostomy?

In the worst of my disease, I would be up all night, in pain and in the bathroom, unable to sleep. I would subsequently be exhausted the next day, completely unable to focus in class. I was also too sick to participate in activities with any of my peers and, as a result, had very few friends. I was unable to live a normal life. 

"I never would have guessed this at first, but it has not negatively impacted my relationships or my career in any way."

What prompted or gave you the idea to literally uncover ostomy through an awareness campaign?

In grade 12, I was in a media class. Our final project was to create a PR campaign for anything we wanted. Knowing I would be the only one to talk about ostomies, I chose that topic and had pictures of myself taken, “naked” but covered in a sheet, with my ostomy showing. My entire high school career had me explaining the ostomy to anyone I had mentioned it to because no one knew what it was.

Those who did know were uneducated, and had misconceptions. I used this as an excuse to change perceptions, and it was such a hit, I knew it had to be used for something more. A few years later, new pictures were taken, a website was built, and I began to blog about my life and how an ostomy can be a lifesaving surgery. 

Who were your biggest supporters when you were making the transition from regular person living with an ostomy to a physical symbol of ostomy and Crohn’s awareness?

Such a strange thing to think! I am a regular person! I mean, I just happen to have a blog where I write about things happening in my life and people enjoy my writing! To answer, though, my biggest supporter has always been my mom. She goes to my site every day to see what’s new — even when there’s nothing.

How has your life outlook changed from those initial post-surgery days/years to becoming an icon of awareness and inspiration for both ostomy and Crohn’s disease?

Icon! I am still just a normal person! However, I do think I am uniquely fortunate to be able to see lives changing in front of my eyes. Uncover Ostomy has given me the chance to connect with so many people struggling through their disease and body changes, but also the chance to see them grow into their own, and accept who they are. It has changed my outlook on life, by showing me that I can contribute to this world in a very positive way. It makes me really happy.

As a young adult, how has Crohn’s disease and life with an ostomy affected your relationships and career direction?

I never would have guessed this at first, but it has not negatively impacted my relationships or my career in any way. In fact, it has helped both! In relationships, it’s made me more confident in myself, and therefore, able to give myself to someone else. In my career, it has given me the opportunity to build and grow something that highlights my skills and expertise.

What advice might you have for anyone newly diagnosed with Crohn’s disease or facing ostomy surgery?

I say this to everyone — find others to connect with. Your doctor will give you advice (that you should listen to) and the internet will provide information (sometimes right and sometimes wrong), but nothing can prepare you quite like talking to someone else who has experienced what you are about to. 

Uncover Ostomy is an online awareness initiative led by blogger Jessica Grossman that sparks positive conversation about the ostomy by sharing positive stories, and thought provoking images that inspire conversation.