This is what an ostomy looks like



*this blog post prefaces my interview so you get to know a little more about me!*

It was just over 14 years ago that my life completely changed. 

At the age of 13, high on drugs, stationed in a hospital bed for the better part of 2 years, and living in unrelenting and excruciating stomach pain, I was told I had to make a decision to have my colon and some of my small intestine removed, or die.

Sure, yeah, I can make that decision - no prob. 

In a haze of drugs with stiff muscles from lack of movement and hallucinations of cheeseburgers that I hadn’t been allowed to eat, 13 year-old me made a decision that, at the time, I had not realized would be life-changing. 

I had agreed to have ostomy surgery. 

At 8 years old, I began to have random stomach pains. From what I can remember, they weren’t horrible, but they were bothersome enough that I would turn down dessert. One day, for reasons beyond me, I decided to weigh myself and saw that I had lost 5 pounds! (8 year olds do not lose 5 pounds.) Within what seemed like literal minutes, my mother had rushed me to my family doctor.

He sent me for some not-so-pleasant-but-let’s-be-honest-horrendous tests, and at 9 years old, I was diagnosed with Crohn’s Disease. It wasn’t really a surprise as my uncle (my dad’s brother) was diagnosed with it when he was 13 and, as a hereditary disease, the signs were clear. I was given some drugs, put on a special diet, and sent on my way. 

My disease was relatively fine until, at the age of 11, I came down with a stomach flu that never went away. The flu spun my Crohn’s Disease into a downward spiral that changed my life, forever. 

I spent weeks on end at Sick Kid’s Hospital in Toronto. When I wasn’t in the hospital, I was at home, struggling to stay awake during the day, and awake all night in the bathroom in pain and uncontrollable bleeding. When they could, my parents would send me to school to try and live a normal life, only to be sent home by the teachers and admin staff because I couldn’t keep my eyes open from lack of sleep, nutrients, and blood. 

While I was in the hospital, I was given IVs, put on NPO (no food allowed) diets, and left to myself for the majority of days. I had what seemed like a million colonoscopies, blood draws, and doctor’s asking to feel my abdomen. I was on harsh medications that sometimes were used for cancer patients, bloated my body, and made me feel just as bad as the disease did (and that’s putting it lightly.)

At 13, I was sat down (well, I was already laying in bed, but you know what I mean) and told that if I did not choose to have my colon removed, it would poison my body. I was told that they needed to take out so much of my colon that I couldn’t have a normal digestive system. I was told that I needed to have a permanent ostomy. 

Today, 14 years later, I’ve now lived longer with an ostomy than without one, and I couldn’t be happier. 

For those who don’t know (and I’m sure there are a lot of you!) an ostomy is a surgically created opening from an internal organ (stoma) to an external point on the body, usually the abdomen, for the removal of bodily waste. Waste passes through the stoma into a special bag worn externally. ^^^ That’s what it looks like. 

To be honest, when I had first been told that I had to have an ostomy, I didn’t even know what it was. When they explained it to me, I somehow envisioned having to tape a plastic grocery bag to my stomach! (I was 13, ok?!) It was after surgery, (and seeing how the ostomy actually worked) it became clear that I was not the only one who hadn’t heard of it before – most people, I realized, had never heard the word before. 

That’s when I took it upon myself to change that. 

Today, I run what was the first online ostomy awareness campaign, (now turned organization,) Uncover Ostomy, which aims to break the stigma (yes, there’s a huge stigma!) surrounding ostomy surgery through storytelling, (much like I’m doing today!)

While there are many people, TV shows, and publications that deem ostomies to be “gross,” “disgusting,” or “only for seniors,” I see it as something completely different. Ostomy surgery not only put my Crohn’s into remission and allowed me to continue on with my life, but it changed me for the better. My ostomy is something I am proud of. 

Since surgery, not only have I grown into a confident and happy woman, but I’ve been essentially Crohn’s free (minus a small blip a few years ago, but all good!) My ostomy allowed me to graduate from high school, from university (Western!), and also get my Master’s degree from NYU! It allowed me to start my own digital marketing business while modeling and acting on the side (you may have seen me in one of the recent 7-Eleven commercials, ha!) It also allowed me to find and marry the man of my dreams.  

Without my ostomy, I wouldn’t have been able to do all of those things. Without my ostomy, I’d be dead. 

Sure, my life now involves pooping in a bag attached to my stomach, but I wouldn’t have it any other way. 

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Thank you to the guys at SickBoy for asking me to share my story and help spread ostomy awareness! For more on Uncover Ostomy, you can check out our Facebook page, or you can follow me on Instagram or Twitter!

- Jessica Grossman 

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