Jessica Grossman is a Toronto-based digital marketer, actress and model. She founded Uncover Ostomy, an online awareness campaign, to spread positive awareness about ostomy surgery that she underwent at the age of 13 and share her story of living with Crohn’s disease.

Jessica Grossman

At the age of 8 Jessica started experiencing severe stomach pains, refused to eat and lost five pounds. When she was 9, she was diagnosed with Crohn’s disease – an invisible chronic illness that affects the digestive system. Jessica was attending school and living a semi-normal life when, at the age of 11, she came down with a major stomach flu that triggered the disease. This was the beginning of a two year stay in hospital. Two years of excruciating pain in her bowels, unable to eat, too weak to even move and medicated on strong narcotics.

 

A few facts about Crohn’s disease

  • Crohn’s disease is a chronic inflammatory bowel disease characterized by inflammation of the digestive or gastrointestinal tract
  • Inflammation is – very generally speaking – the body’s immune system’s response to stimulus
  • Crohn’s disease inflames the lining of the bowels, which means that the person cannot digesting food, absorb nutrients and eliminate waste in a healthy manner
  • Crohn’s disease affects 3.2 per 1,000 people in Europe and North America. It is less common in Asia and Africa. It has historically been more common in the developed world
  • Researchers believe Crohn’s disease is caused by a combination of factors involving genetics, the environment, and an overactive immune system. It is not caused by something you ate

Ostomy surgery

Jessica Grossman

 

“My body has not always been the greatest cooperator. When I was nine years old, I was diagnosed with Crohn’s disease and it put me in the hospital between the ages of 11 to 13. After two years in the hospital, I had a choice: ostomy surgery or death. I chose life.”

When she was 13 a surgeon told Jessica that the doctors had done everything to improve her condition and there was nothing left to do. She had a severe case of Crohn’s disease and the only hope was a surgery that would remove her entire colon. Otherwise, she was going to die. “I had lived a life so horrible, so isolated, and so excruciatingly painful that any alternative was better than what I was living,” she recalls.

For Jessica the surgery meant three things: having her colon removed, creating an ostomy and having to wear an ostomy bag permanently attached to her stomach. Uncover Ostomy explains that “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. Bodily waste passes through the stoma into a special bag on the outside of the body that the wearer empties on a regular basis”.

The surgery was successful and it allowed Jessica to carry on with her life. She was able to finish high school, got her undergraduate degree in Ontario and her Master’s degree in New York. “The procedure saved my life. I was going to die from Crohn’s disease if I didn’t have the surgery.” said Jessica in an interview with Toronto Stabdard.

Launching Uncover Ostomy

jessica grossman

As a senior student in high school Jessica was to create a PR campaign about anything she wanted, and she chose ostomy. For the first time she was going to expose her ostomy bag by presenting pictures of herself. As she recalls, most people had never even heard about it and those who had were misinformed.

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.

As she was putting her PR presentation together, Jessica realized that there was very little social media coverage on ostomy and lack of support for those who have Crohn’s disease. A few years after high school her project turned into a website – Uncover Ostomy – where ostomates (the name Jessica gives ostomy wearers) can connect and encourage each other.

Jessica Grossman

Jessica told Toronto Standard that although Uncover Ostomy is neither the first nor the only online ostomy awareness project, “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.” She also recognizes that with all the online communities dedicated to Crohn’s disease she couldn’t find anyone who “had come out to the public and said that their ostomy had saved their life.”

Uncover Ostomy’s mission has been, and always will be, to break the stigma surrounding the ostomy, to spread positive awareness of the life-saving surgery, and to encourage body positivity for those with ostomies. Since 2014, Jessica has taken on Uncover Ostomy in it’s entirety as a sharing platform for, not only her story, but for the story of all others who wish to share.”

Empowering ostomates

Jessica Grossman

Uncover Ostomy works in two main directions:

First – educating the public on what ostomy is and what it is not, as well as spreading awareness about how it saves lives.

Second – encouraging those who need the surgery to go through with it and providing tips on how to live with an ostomy bag.

Since a surgery requires the removal of some part of the bowel, colon or small intestines, patience have negatives feelings towards it. Those who agree to undergo the surgery feel like their life will never get back to normal and fear that people around them will find the ostomy bag gross and off-putting. “The biggest challenge I see for the ostomy community is that many people have the surgery and think their life is over. This is a huge stigma that Uncover Ostomy tries to defeat. People with ostomies often think that since they now have this bag on their body, no one will want to be around them”, says Jessica.

jessica grossman

She often visits the patients awaiting surgeries dressed normally to show them that you can wear almost anything with a bag. To those who fear that they will never be able to be in relationships after the surgery Jessica says that “she’s been in multiple long term relationships with no issue”. What’s more, the surgery did not stop Jessica from being able to workout, earning two university degrees, wearing almost anything she wants, including bikini, getting married and starting her own digital marketing agency.
This is how Jess wraps up her interview with PersonalHealthNews:

I never would have guessed this at first, but it [the ostomy] 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.

#MYOSTOMYSTORY

In October 2015, during World Ostomy Day, Jessica helped launch the #MyOstomyStory social media campaign, in which people shared their stories and some even got inspired to post their own pictures showing off their ostomy bags.

“We asked our community members, both with ostomies or without, to share their #MyOstomyStory about living with one, taking care of someone with one, or simply being educated about it”, says the campaign page.

Kaitlyn O'Brian

 

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