‘I chose to have an ostomy instead of dying’

Written By Unknown on Sabtu, 05 Juli 2014 | 14.41

Jessica Grossman has worn an ostomy bag for 11 years, and now runs a campaign to support other people with ostomy bags. Source: Supplied

AT THE age of 13, Jessica Grossman was given a life-changing ultimatum by her doctor. To have ostomy surgery, or die.

Jessica had spent the last five years of her life in and out of hospital with excruciating pain in her bowels due to Crohn's disease. The inflammation of her small intestine and colon meant she couldn't eat. She was confined to a hospital bed, hooked up to an IV and medicated on strong narcotics.

At 13, Jessica and her parents had tried every medication and procedure that existed with no results. If she continued this way, Jessica was at risk of a bowl rupture which could kill her.

Jessica remembers the moment her doctor broke the news that she required surgery.

"[The surgeon] sat down next to me and said that there was nothing left to do but have surgery," Jessica recalls. "He told me that the surgery would remove my entire colon and some of my small intestine and would result in an ostomy (something I had never heard of).

"He said if I didn't choose this option, I was going to die. Despite being a child on heavy medication, I remember thinking completely clearly that this surgery, being my only option, was the choice I had to make.

"I had lived a life so horrible, so isolated, and so excruciatingly painful that any alternative was better than what I was living," she said.

After news.com.au's article on the British model's daring photo with a colostomy bag, Jessica approached us with her story.

Jessica is a 24 year old actor and model from Toronto, Canada who has spent the last four and half years empowering women and men with ostomy through her Uncover Ostomy campaign.

Jessica has used her modelling knowledge to raise awareness for ostomy. Source: Supplied

According to Jessica, Undercover Ostomy works on two fronts. Firstly, they educate the public on what an ostomy is, how it saves lives and diffuse the stigma around it. Undercover Ostomy also works to encourage patients who need the surgery to go through with it and then provide support, tips and tricks on how to live with an ostomy bag.

"We believe that by changing the public perception of the ostomy we can save lives of those needing the surgery to survive," Jessica told news.com.au.

A natural leader, Jessica spent her high school and university years telling her story of ostomy and how it saved her life. Over this time, she realised there was very little social discourse on ostomies and a lack of support for younger people with Crohn's disease.

Jessica decided to start Uncover Ostomy on "a whim".

"After speaking about my ostomy for years and realising that literally no one had ever heard of it until I had explained it, I saw there was a lack of information about the lifesaving surgery," Jessica told news.com.au.

"I also found that those who did know what an ostomy was had a skewed perception that it was a 'disgusting thing for old people'."

Jessica celebrated 11 years wearing an ostomy bag in January this year, and encouraged other women to take photos of their ostomies too. Source: Supplied

In her late teens Jessica met another ostomy wearer, Rob Hill, who encouraged her to start a project to raise awareness. He helped her build a website and Facebook page where ostomates (the name Jessica gives ostomy wearers) could connect and support each other.

Jessica started a blog to further normalise ostomy bags and integrate them into a fun-filled, feminine lifestyle. The response to her writing was very positive.

"I think the main difference with my blog and other ostomy focused publications out there is that my writings are about my life ... and it just so happens that I have an ostomy — an ostomy that rarely stops me from doing anything," she said.

To date, the Uncover Ostomy website has had over 100,000 unique visitors from 170 countries, with more than 6,000 completely organic fans on the Facebook page.

Tj posted her photo to the Uncover Ostomy Facebook wall. Source: Facebook

Alyssa wears her ostomy bag comfortably with a skirt. Source: Facebook

The Uncover Ostomy Facebook page is a place where women (and men) can be inspired by other ostomy wearers and feel a sense of pride about their body. Not all those who like the page have an ostomy, with some fans simply supporting the cause because they know a family member or friend with ostomy.

Jessica has been photographed with her ostomy in full view, and has encouraged other women and men to do the same, with many posting their photos to the Facebook page.

But despite the support, ostomy wearers are still fighting an uphill battle, Jessica says.

"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.

Lisa finds higher waisted swimming bottoms comfortable. Source: Facebook

Valerie likes wearing high waisted shorts with a one-piece swimsuit. Source: Facebook

"I often have to go into hospitals in normal clothes to show patients awaiting surgery that you can dress normally with a bag, because they have decided they would rather die than have the surgery.

"I also get messages from people all the time telling me that they will never be able to date again, where I tell them that I've been in multiple long term relationships with no issue."

For Jessica, her ultimate message to ostomy wearers and supporters is simple.

"I get hundreds and hundreds of messages from people telling me that they believe their life is now over," she said.

"I tell everyone the same thing — your life is actually just beginning."

I have been alive for 11 years.

For 11 years, I've been able to think.

For 11 years, I've been able to grow.

For 11 years, I've been able to learn.

For 11 years, I've been able to eat.

For 11 years, I've been able to live.

(Extract from Jessica's blog.)

Are you inspired by Jessica's story and the Undercover Ostomy campaign? Tell us in the comments below or join the conversation on Twitter @newscomauHQ | @gracekoelma

Message of support from ostomy wearer Sam. Source: Facebook

Originally published as 'I chose to have an ostomy instead of dying'

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