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Carrying it with her

Photo ‪Courtesy of the Intestinal Disease Education and Awareness Society‬

What do you see when you look at Western student Jessica Grossman? What you can’t see is the hardship she endured for years. What you can see is her ostomy.

For most dads, it would be a horrifying realization.

Their daughter, their little girl — all of 19-years-old and away from home for the first time attending a university with a reputation for less than responsible behavior — was seeing a new boy and she had — gasp — been sleeping with him.

Even the most even-keeled father would immediately be on the phone ordering the chastity belt. But not Jonathan Grossman — he couldn’t be happier.

“You can do that?” Jonathan, a hopelessly positive father if there ever was one, exuded. “I’m so proud of you. I would never even think you could do that. That’s awesome.”

No, it wasn’t sarcasm. He was genuinely proud of his baby girl — his little angel who took a little longer to grow into her wings.

He was just so happy she could live a normal life.

Waiting for the storm

When Jessica Grossman was 11-years-old she stood 5’3 and weighed all of 50 pounds.

Her hemoglobin levels — which ballpark around 120 for an average 11-year-old girl — hovered at 55. Anything 40 or below would have meant certain death.

Clearly something with Jessica was terribly wrong.

Two years prior to that, Jessica had been diagnosed with Crohn’s Disease — an incurable intestinal disorder in which the body’s immune system relentlessly attacks and inflames the intestines, like it would if it were trying to eliminate an unwanted substance from the digestive tract. The list of symptoms is long, but most suffer from diarrhea, weight loss, vomiting and intense abdominal pain.

Jessica was nine-years-old when she was diagnosed — a fairly early age to catch the disease. But studies show that the earlier you are diagnosed, the worse and more complicated the disease will be. Not to mention the fact that the disease often doesn’t develop until somewhere between the ages of 15 and 30. Meaning little Jessica Grossman could just sit idly by, waiting for a storm to come without a weather report.

Yet almost always there is a switch — an unrelated medical event that wakes the disease and begins its savage assault on the intestinal tract.

For Jessica, it was a stomach virus that she contracted right before she began Grade 7. Just like that, in the span of a few days, Jessica was drained of all her 11-year-old energy, replaced with stomach scraping pain that clawed at her insides around the clock.

Yes, something had gone terribly wrong. Little did Jessica know, she would spend the overwhelming majority of her next two years practically immobilized.

“Basically I’m in a bed in a hospital — I don’t ever want to get up. The pain keeps getting worse and worse. You can’t really describe it. Imagine your insides having sharp knives grinding through them constantly. That was my life,” Jessica said.

Jessica spent the majority of the ages 12 and 13 immobilized at Sick Kids Hospital in Toronto, only leaving briefly to go home and sleep in her own bed before the pain would get worse and she would need to go back. She tried going to school a few times but could only last around an hour before she got too tired and had to leave.

Her mother Julie, a physiotherapist and manager of a health clinic in north Toronto, would spend time with Jessica during her lunch breaks, hiding her lunch because she knew her daughter couldn’t eat. Her father Jonathan, who worked from home designing websites, was able to spend even more time with Jessica, working from the hospital while she slept.

Jessica spent countless nights unable to sleep because of the unbearable agony ripping through her stomach. Jonathan stayed up with her, talking about movies, music, anything to take her mind off the pain.

Jonathan, ever the idealist, would look up experimental procedures online, trying to inspire hope in Jessica during her darkest hours.

“He would say, ‘Hey Jessica, do you want to go to the States and eat some worms? There’s a study that says that will help your pain,’” Jessica said.

Finally, when Jessica was 13 and after two years of constant suffering in the hospital, doctors presented her with two options.

“They said either you get this ostomy or you die,” Jessica remembered. “It wasn’t really much of a choice.”

And thus, the doctors at Sick Kids went into Jessica’s stomach and harvested her colon, removing the final part of her digestive system and with it her ability to go to the washroom whenever she pleased. They then made a small incision in her abdomen and rerouted her small intestines out of her body, folding the edges of the open ended tube over on itself and stitching them down to form what’s known as a stoma. Waste would flow freely from the stoma into an ostomy, a small, tan-coloured pouch that collects any and all waste that passes through her digestive tract, like a balloon attached to a water faucet.

And that was that. Off went little Jessica Grossman, blindly into the world of having an ostomy after a life-changing and likely life-saving surgery. The surgeon’s wife, by some blind stroke of luck, had an ostomy herself and volunteered to show Jessica how it worked and teach her how to live her live with a bag constantly collecting waste on her hip.

“I’ve been very lucky. This was a choice for me. I had resources and connections. I got to see an actual person wearing one and she taught me everything like how she was wearing jeans,” Jessica said. “Some people aren’t as lucky. There are a lot of people who wake up with an ostomy and have no idea what happened. They don’t know it’s coming. One day it’s just there.”

The birth of an idea

All of a sudden the pain stopped. The Crohn’s went away and, other than a minor speed bump with a skin condition Jessica developed from her ostomy, the road was relatively smooth. Life was normal again.

She would get dehydrated quickly, on account of missing her colon, and her body had trouble storing iron, but these were minor inconveniences went compared to being able to live a healthy, normal life.

Jessica went back to being a teenage girl, catching up on the two years that passed her by while she lay in a hospital bed. She went to movies, she did dance, she dated.

She was always carrying a pouch of her own waste, literally attached at the hip. But it didn’t limit Jessica and she even found a penchant for yoga and dreamed, like many girls her age, of one day being an actress.

Summers were spent in Alberta at Camp Horizon, a summer getaway for youth with a variety of illnesses and disabilities, including ostomies. Winters were spent at home in Toronto, acting, modeling and being a teenager.

Then in a Grade 12 media class, Jessica was given an assignment to come up with a marketing tool for a charitable cause. She didn’t think much of it until she woke up in the middle of the night, as if struck by lightning, and immediately knew what to do. She was going to bear one of the most private parts of her body to her entire class — her ostomy.

“I decided the best way to get the point across that I’m okay with this and I’m positive about it was to show off my ostomy and just put it out there,” Jessica said.

Jessica set up a provocative photo shoot with a volunteer photographer and edited the photos with the help of her dad, a computer whiz with a deft hand for Photoshop. The photo caption was: “70,000 people in Canada have an ostomy — it’s time to stop covering up.”

And then it was over. Jessica handed it in to be marked — “I didn’t do as well as I hoped” — and then thought nothing more of it.

Until that summer.

Climbing the mountain

It was an unusually rainy summer in Calgary in 2007 — with the skies opening up and pouring down 60 cm of rain in August, a month most Albertans would say is typically their driest. But that didn’t bother Jessica who was determined to soak in her final year of bonfires, white water rafting and hospital horror stories at ostomy camp.

It was that summer that Jessica met Rob Hill, who, like Jessica, had his colon removed due to complications with Crohn’s disease and wears an ostomy.

It’s no surprise Rob and Jessica were drawn to each other — the like-minded duo both strive to put positive spins on their ostomies. Everyone who wears one has their own approach for how to shake the stigma that comes along with it. Hill simply climbs the earth’s tallest mountains.

Just last year Hill scaled Mount Everest, completing the vaunted seven summits, a campaign that sees brave climbers scale the highest mountain on each continent. Less than 250 people have accomplished the feat and Hill is only the 15th Canadian and the first person with Crohn’s Disease and an ostomy to summit the seven beasts. In ostomy circles, Hill is nothing short of Superman.

But when he wasn’t busy climbing the largest mountains on the planet, Hill founded the Intestinal Disease Education and Awareness Society (IDEAS) running campaigns and providing education to raise the awareness of intestinal diseases in North America.

Hill immediately saw potential in Jessica’s photos from her high school media class and, ever the mountain climber, wanted to take things to the next level. He wanted a website, a new photo shoot, a brand — he wanted Jessica to be the world’s most successful ostomy spokesperson. It would be called Uncover Ostomy.

Jubilant to turn words, diagrams and brain storm sessions into a movement, Jessica and Hill brought John O’Shaughnessy, a web, communications and social media expert, on board to help with the back end of the design and production. The trio made plans to reconvene in Vancouver in the summer of 2009 to do the photo shoot.

For once in her life, Jessica was able to take her ostomy and turn it into something that could help others — not just herself.

Against all odds

It’s funny how life feels like it needs to balance you out when things are going too well. Just as you realize your greatest achievements, successes, accomplishments — when you finally feel like you’ve gotten your wings back. Life likes to shoot a hole through one of them and bring you back down to earth.

Shortly after planning Uncover Ostomy, the news came down. Jessica’s dad Jonathan had myelofibrosis.

An extremely rare and life-halting bone marrow disease, myelofibrosis disrupts the body’s production of blood cells, leaving the afflicted with little to no energy, enlarged organs and a tremendous amount of pain in the mid-section.  It was cruelly similar to Jessica’s Crohn’s, but dissimilar in that there was no easy fix.

Without a full bone marrow transplant, myelofibrosis quickly develops into acute leukemia, a horrid strain of cancer that killed more than 2,000 people in Canada in 2007.

But bone marrow is a finicky substance. While it’s easy to find blood donors with only 30 blood types existing on the face of the planet, bone marrow is extraordinarily specific and the likelihood of finding a match is estimated at around one per cent.

In spite of the grim odds, Jessica and her family quickly went to work, organizing bone marrow drives to try to find a match, testing more than 2,000 people and spending nearly $75,000 US out of pocket after Canadian Blood Services refused to fund the drive.

And then the Grossmans won the bone marrow lottery.

Remarkably and against all odds they found a match. Jonathan was to undergo a bone marrow transfusion that July. The exact same day as Jessica’s photo shoot in Vancouver.

Jessica scrambled to reschedule and move her flight so she could be by her ailing father’s side as doctors tried to save his life. But Jonathan was having none of it.

“He said ‘Jessica, I don’t care. You’re going there and you’re doing this. You’re not going to sit here with me and let this pass you by. End of story,” Jessica said.

So as her dad lay in a hospital bed on the other side of the country receiving increasingly high levels of chemotherapy radiation that left him a vomiting, feverish mess, Jessica was in British Columbia doing the photo shoot and laying the ground work for Uncover Ostomy — the campaign that was supposed to be the most exciting, substantial achievement of her life. There’s conflicting times in your life, and then there’s that.

At 11:00 a.m. on July 29, a warm, overcast day in Vancouver, Jessica watched via Skype as Jonathan had a stem cell cocktail — resembling tomato soup, he would say — injected into his weathered body. He spoke to Jessica briefly before the toll of the ordeal caused him to vomit violently.

After completing her photo shoot and updating her aunt and uncle in Victoria, Jessica raced back to Toronto to be with her ailing father.

A life in 37 days

Jessica Grossman had spent more time in hospitals than anyone else should ever have to in their lives. And now she was going back.

But this time, when Jessica arrived at Princess Margaret Hospital in Toronto — right across the street from Sick Kids where she logged her years in a gown ­— she was the visitor and not the patient, sitting by her father’s side as he lay bedridden, hardly able to move or even talk.

It would go on like that for more than a month as Jonathan’s body decided whether it would accept the new bone marrow or not. Jessica blogged her father’s ordeal, as his body began bloating and spotting, while the area around his eyes puffed up like a fish and turned bright shades of red and yellow. Through the days spent vomiting and sleeping to the days where the combination of the procedure’s vicious effects on his body and the cocktail of drugs he was on would cause his moods to swing wildly from aloof and detached to angry and belligerent — Jessica was there.

The Grossmans watched the doctors scrawl Jonathan’s daily blood work on a white board across from his bed, clinging to every tenth of an increase in Jonathan’s neutrophil level or white blood cell count.

But throughout it all, their optimism remained guarded.  Just finding a donor had been a miracle in and of itself — it would take another one entirely for the transfusion to work. Bone marrow transplants are an absolute final option procedure, only given to those with life-threatening illnesses because the risk of a fatal complication from the procedure is far too high.

In order to even receive the transfusion, Jonathan had to endure eight straight days of chemotherapy to kill all of the diseased bone marrow in his body and make room for the new stem cells. Doctors surged an ungodly amount of radioactivity through every single pore of his being, enough to literally fry all of the bone marrow in his body. No man could possibly live through that.

On the day the Grossmans were supposed to find out if the new bone marrow was working, the doctors stopped putting Jonathan’s numbers up on the whiteboard. Slowly, Jonathan’s breaths began getting farther and farther apart.

Just before 1:00 p.m. on Sunday, August 30, 2009, at just 47 years of age, Jonathan Grossman died of kidney and liver failure. The chemotherapy had damaged his organs to the point where they refused to function.

Jessica wrote of the news on her blog, announcing her father’s death to the wide network of family and friends who followed it.

“Finally, he’s at peace.”

“I wish he could have seen where it’s gone”

Losing a parent is not a unique experience by any stretch of the imagination. For those who are lucky enough to live long lives it is, in fact, inevitability. Everybody dies, nothing lasts forever. We are all fragile organisms, much more delicate than we care to understand considering the average North American lifestyle. The existence that we take for granted everyday takes mere moments to be snatched away from us for all time.

But Jessica lost more than just a father.

Through her two-year gauntlet of tests, procedures and drug doses, Jonathan was there. When the doctors told Jessica they were taking away her colon in order to keep her alive, Jonathan was there. Through her darkest nights, curled up in pain on a hospital bed, just waiting for the next hour when maybe the pain would be a little softer, Jonathan was there.

And now he wasn’t. A mere two months before the expected launch of Uncover Ostomy, Jessica had lost her support system. Just like the colon the doctors removed six years earlier — how could she function without it?

But if anyone lives carpe diem, it’s Jessica Grossman.  Her father saw just 47 years and there was a time where it seemed like Jessica might not even make it to half that. If her dad could have had anything in this world, it would have been for his daughter to be successful and to achieve her dreams.

So on Oct. 3, 2009 — world ostomy day in Canada — Uncover Ostomy launched.

The website’s splash page was anything but subtle, with a seductive picture of Jessica, hair perfectly messed, wearing a skimpy white tank top and black jeans, undone at the top with a tan ostomy bag peaking out above the belt line.

Her first blog, complete with video and a written introduction, was surprisingly positive for a girl who had lost her father just a month prior.

But that shouldn’t have been a surprise — Jonathan was an unbelievably positive man. Those who knew him couldn’t help but be uplifted by his infectiously bright personality. He was the ultimate idealist who wanted to change everything that illed the world.

Uncover Ostomy wasn’t just for herself or the tens of thousands of Canadians living with ostomies. Jessica was doing this for her dad.

“I’m just so happy that he kept pushing me to do it no matter what. He was so involved in my life — he would never let anything hold me back,” Jessica said.

“I know he was so proud of the fact that I had started it. I wish he could have seen where it’s gone.”

The future is today

If Jonathan was here today he would see a unique online community, a one-of-its-kind arena for ostomates — if you don’t recognize that word, you aren’t one of them — from around the world to come together and exchange ideas, share tips and, most importantly of all, break the stigma.

“The stigma is there so people that have [ostomies] hide it. But if they keep hiding it, the stigma is still going to be there,” Jessica said. “I want to break through that. When I talk to kids with ostomies I say, be positive about it because that’s the only way that it’s going to change.

“We need to get the information out to people who don’t have ostomies, because once they know it’s okay and they learn what it is and realize that it saves our lives, then the people who have it will be more open.”

That starts in the next few months when Jessica and the team from IDEAS are revamping Uncover Ostomy with a new design, new photos and improved functionality. Jessica already blogs regularly and answers reader questions, giving tips and advice on how to live with an ostomy. But she wants the website to grow into a support system with areas for those with ostomies around the world to interact with each other and share their own tips and stories.

Jessica doesn’t mind being the one fielding the questions from first-time ostomates. But what she really wants is for others to step up and follow her lead, putting a positive spin on life with an ostomy.

She already gets countless comments from ostomates world-wide on her Facebook fan page and her Twitter, even receiving photos from brave individuals looking to follow her lead and show off their ostomies for the world to see.

“A lot of people with ostomies create their own handicap with the way they think about it,” Jessica said. “If you come out with it and tell people about it and say ‘this is what I have and I’m fine with it,’ then people see it positively. If you go up to someone and say there’s this gross weird thing attached to me, everyone else is going to see the same thing.”

“Hopefully it will be a snowball effect because the discourse around ostomies has only just recently started to change.”

Not that anything about Jessica’s life ever stays stagnant. Leaving the University of Western Ontario after four years with a BA in media studies and going to New York University to do her masters in graphic communications management and technology in the fall, change constantly fills the air in Jessica’s world. There’s always mountains to climb.

“If you don’t have positivity, all you’re going to do is stop yourself from doing anything you want to do,” Jessica said. “I’ve been able to look at it very positively and the ostomy hasn’t stopped me from doing anything.”

That much is clear for Jessica Grossman. No one needs to tell her anything is possible. No one can ever clip those wings.

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