“I need an ambulance…let me know if I’m gonna be alright. Am I gonna be alright?”
These words sang quietly in her ears as the sun finally lit the rubber chicken, one of the many unconventional knickknacks in her University of Calgary dorm room. It crept across the mess of papers and clothes strewn across her floor, only to land on her already overheating body.
For Laura Willumsen, a university student and my best friend, the third day of excruciating pain had begun as the last, with a fire in her gut and a sore back from being curled in the fetal position. The night had been spent staring at the walls of her room in the dark, unable to cool down and unable to sleep. She remembers, quite ironically, that the song Ambulance by Eisley had been playing on her iPod as she tried to pass the time, and the pain.
It was two days earlier, in Oct. 2016, that Willumsen had been walking back to her dorm room – a mere 10-minute walk from the club where she had bid her roommates goodbye. The fall chill had felt like a blessing as the sun dipped behind the library, darkening her path as she ignored the lingering students.
Something was wrong.
“I had a really good day, but I felt really off,” remembers Willumsen, “like emotionally off. It was very strange how that happened. I felt depressed and anxious, literally any bad emotion – I was feeling.”
She went to bed that night after swallowing an aspirin, and expecting to sleep off what she describes as an intense fire in her lower abdomen. Little did she know, that at just 19, the pain she was so used to dealing with for the past eight years would be the result of a disease that would affect her for the rest of her life.
Willumsen called her parents in Okotoks. Her father, Ian Willumsen, came straight from work to pick her up and as soon as he saw her, he knew something wasn’t right.
“She was looking white, she was having trouble walking, she was in pain,” said Ian. “Laura, being the tough nut that she is, was actually in pain, and saying ‘I can’t do this.’”
He wouldn’t take no for an answer, so he drove her straight to emergency at the Foothills hospital. It would be an agonizing 36 hours later that she would be told that she was suffering from a chronic illness that was silently making its way up the charts here in Canada – Crohn’s disease.
According to Crohn’s and Colitis Canada, more females than males are diagnosed with Crohn’s disease, with the peak onset age between 15 and 35 years old. And even though she stands in the demographic, a proper diagnosis is often a long and tedious process, which is common for teens like Laura.
“Sadly, misdiagnosis does happen,” explained Dr. Keith Sharkey, the Crohn’s and Colitis Foundation of Canada Chair in IBD Research. “I suspect for more severe cases it would be correctly diagnosed in the vast majority of cases. Perhaps for a more mild case it would be harder to correctly diagnose and so may get missed initially.”
Crohn’s disease is an autoimmune disease that causes inflammation in the gastrointestinal tract. Usually it targets the lower part of the small bowel and the colon and can penetrate the inner and outer lining of the intestines.
After diagnosis, treatment often involves surgery, along with expensive immune suppressants. Currently researchers are working on developing more direct, effective and long lasting treatments for the difficult and often invisible disease.
I’m sitting with Laura at my kitchen table early in 2017, five months after her diagnosis. She had to withdrawal from school before she had a four-hour laparoscopic bowel resection to take out the infected part of her intestine. She has just started taking Humira, a drug that helps reduce the symptoms of Crohn’s such as severe abdominal pain, fever, diarrhea and weight loss.
It’s been two months since the surgery and she seems stronger now than she was before. We’ve sat here many times; writing fan fiction, eating spaghetti at midnight, laughing at our inside jokes. I’m still getting used to the fact that her hair no longer reaches the small of her back, but instead curls at her earlobes. Post-surgery hair loss was something they had warned her about. She couldn’t stand seeing chunks of hair tangled in her fingers every time she showered.
I ask her how she felt when they told her that she had a disease. She looks at me, hesitant, and I can see the late February sunshine reflected in her eyes. They have suddenly become misty. She speaks quietly as tears glisten, but don’t fall.
“My immediate response to them saying I have a disease – I didn’t know what it was, I didn’t know what it meant – was I just want to die.”
Missing the signs
“Let me know if I’m going to be alright, am I gonna be alright?”
It’s Oct. 8, 2016. Tired, in pain and overwhelmed, Laura is finally transferred from the Foothills Emergency department to the gastrointestinal department. Initially, the two doctors that attended her thought she was suffering from appendicitis. But after realizing how much pain she was in and conducting a CT scan and multiple ultrasounds, a more experienced doctor would tell her that she had been suffering from a chronic illness for years – and that perhaps, like many other young people that have been diagnosed with the disease, it could have been diagnosed sooner.
Just the day before she had gone to the on-campus walk-in clinic. Another dose of Advil had gotten rid of most of her symptoms – the fever, the racing heart, the pain – something she now knows probably made the abdominal bleeding worse. The doctor who saw her chalked the pain she described as her intestines being doused in gasoline and set on fire, as menstrual cramps.
“I was like ‘I’ve had cramps before, this isn’t it.’ She wanted to talk more about Supernatural than my health because she thought nothing was wrong,” said Laura.
And this was not the first time that Laura had been dismissed. Throughout junior high and high school, she had made many trips to the doctor’s office for severe abdominal pain. Each time, they decided that it was just a case of constipation. At one point, they even thought that it was appendicitis, but the test results came back negative.
“Misdiagnosis is a big thing, especially because the symptoms are very different for everybody,” said Laura. “Nobody takes the time to do the extra scans, the extra tests, I didn’t have an endoscopy. I probably wouldn’t have needed surgery.”
Just last May, after finishing her first year in the biological sciences, she went on a four-week international student volunteer trip to Australia. Afterwards, Laura noticed that she was having intense gut pains that would come without warning and leave just as quickly.
“[Being diagnosed with Crohn’s] proved how strong I can be. I went through that, and it wasn’t easy, but I did it without completely breaking” – Laura Willumsen, 19
“In the summer I’d play games at night, and I’d just get so much pain. Literally I’d just be curled up on the floor in the bathroom…[or] I would make it up one flight of stairs and just would lay there feeling like I wanted to puke and like I was dying – and then it would go away.”
Friends and family thought that perhaps she had gotten something from Australia, but looking back, Laura believes that this was a Crohn’s flare up. An episode like she describes above could last anywhere from 10 to 45 minutes. She would take some pain medication or Gas-X and wait curled up on the cold tiles of the bathroom she shared with her older sister until she was able to lift herself off the floor.
“I felt partially sick, like I could puke but like I had to use the bathroom. It hurt so bad that I couldn’t use the muscles, I just wanted to curl up and like sleep to get rid of it – to forget about it,” said Laura. “I was just playing my game, content, just sitting there and suddenly it was pretty painful and I’d have a headache. And then I’d be fine the next day, I’d go to the washroom and I’d go on with my life.”
Even her diet was one that could have made her condition worse. “I was literally eating big meals, not often, and everything that you could do to make it worse, I did,” she laughs, pointing to the coffee cup on the table between us, “I’d have caffeine so much – and those all influence and make your symptoms worse.”
The big meals she was eating would be pushed through her digestive system, where most likely her intestines were already swollen. “If I would have known, I could have switched a few things around.”
Her gaze falls from the coffee cup. Her smile fades.
Unmasking the disease
Crohn’s disease is no stranger to Canada. In fact, as of 2012 there were 129,000 Canadians with diagnosed Crohn’s disease. Canada itself is currently in competition with Europe for the highest prevalence of the Crohn’s disease and ulcerative colitis. It is still unknown why there was 64 per cent increase in IBD in Canada between 1998 and 2008, and as of 2014 researchers are theorizing that environmental exposure could be a factor.
It is theorized that the first clinical description of Crohn’s disease was written back in 1769 by Giovanni Battista Morgagni in the De Sedibus et Causis Morborum or The Seats and Causes of Diseases. Nearly a hundred years later in 1859, it was Sir Samuel Wilks that coined the term “ulcerative colitis.” Fast-forward a couple years to 1913, and the first series of Crohn’s disease cases is published in the British Medical Journal by the Scottish surgeon Thomas Kennedy Dalziel.
Today, scientists and medical professionals continue to gain valuable knowledge about the chronic condition and yet there is no known cure for ulcerative colitis and Crohn’s disease – both of which are under the umbrella term Irritable Bowel Disease, or IBD.
Scientists also don’t know the exact cause of IBD – though they have come closer to narrowing down what could be causing the consistent rise of the disease in Canada.
Dr. Sharkey explained that there are three main factors that affect the development of Crohn’s disease.
“Before we understood genetics, immune system and environmental triggers were important,” said Sharkey. “It was about 10 to 20 years ago that we started to understand the role of bacteria in your gut, as being an important factor in IBD. Together, these are the key elements that make up IBD.”
This bacteria is called the microbiota. It can cause self-sustaining inflammation and the breakdown of the lining of the gut wall – which then sustains and causes inflammation – not unlike what Laura experienced those three long months in the hospital.
Currently, the Snyder Institute for Chronic Diseases at the University of Calgary is working hard to find a way to treat Crohn’s and Colitis by studying the progression of the disease and how it works inside the body.
Dr. Simon Hirota, a professor at the University of Calgary and a researcher for the Snyder Institute explains that his lab researches the inner lining of the gut and how it reacts in IBD patients. Initially, for the last 20 to 25 years researchers like Hirota were using cancerous cells to study the digestive system.
“We could only use cancer cells because the cells that line your gut are essentially born to die,” said Hirota. “They start forming in the wall of your gut, and they migrate up as they start to become these barrier functioning cells and then within three to five days every cell in the inner lining of your gut essentially dies.”
“But as you probably expect the cancer cell is not a normal cell. So for a decade we were studying these cells thinking ‘okay, we know what’s going on,’ and then we realized that cancer cells aren’t real cells, so everything we’re doing is essentially artificial.”
Today, Hirota and his team of researchers are able to generate non-cancerous structures – stem cells – from both human and mice tissue, which allows for them to study an IBD patient’s epithelial cell, a type of cell in the gut, compared to a healthy controlled epithelial cell.
“The really cool thing is we’re now able to study the changes in biology of your barrier given your genetics, which allows us to really personalize the research we’re doing. Now we’re looking at specific variants that are associated with IBD and really figuring out what they’re doing in the system,” explained Hirota.
His team is also looking into how the epithelial cells fix themselves within the intestinal tract. Hirota’s lab has been causing a wound in artificial systems that are akin to those in the human body. “Then we’re adding things to see if we can accelerate the healing of that wound, hoping to enhance healing and the repair of functions of IBD patients. Hopefully restoring that damage and the balance between injury and damage.”
Hirota also works with the cardiovascular field in order to help understand how to solve a problem that is common in Crohn’s patients – the narrowing of the intestinal tract.
“We have zero treatment for this right now, the only treatment we have is to basically take the tissue out and hope there isn’t a reoccurrence. So you’re looking at something that’s remarkably inefficient and the recurrence rate is very high,” said Hirota.
However, now with the research conducted in the cardiovascular field, they can apply it to this phenomenon in Crohn’s patients that is called “remodelling.”
“So we’re taking the knowledge from the [cardiovascular field] and actually applying it to the systems to see if we can actually stop that muscle growth, in hopes of stopping the process of narrowing that tube.”
This is just one aspect of research going into finding more effective treatments, and ultimately a cure for those living with IBD. The Snyder Institute is also looking into how parasites in the gut can help manage IBD, what causes inflammation in the gut, and how an individuals diet can help or hinder the effects of IBD.
The most recent treatment to combat IBD, Vedolizumab, which was approved by Health Canada, was released in May 2016.
“This treatment blocks the recruitment of immune cells to the gut wall. The idea of this recruitment was first developed here in Calgary. But it was 20 years before that came to fruition as a treatment for patients [that] the ideas were discovered in Calgary – that’s how long science typically takes, but the impacts are huge,” explained Sharkey.
“Ultimately, of course we want to cure the disease,” said Sharkey. “But we are very happy if we can come up with new treatments that can put the disease into remission, because that for most people is very effective.”
“Send me a redeemer…Cause I know how it usually goes, I know how it usually goes….”
Laura and I duck in and out of the crevices of the university, trying to avoid the biting March wind as much as possible. It’s a Saturday, so it’s not as busy as it could be. The hallways are spotted with students that don’t know about her health problems. After all, Crohn’s is a silent disease.
We climb the two flights of stairs that lead to her dorm. She refuses to take the elevator. We cross the shared common area, where a sole green plate rests on the counter and enter her room. The first thing I see is her bookcase, cluttered with remnants of Haagen-Dazs ice cream containers, Vitamin D, a Star Wars cereal box, and a single empty Mikes Hard Cherry bottle; Dune by Frank Herbert, North & South and the second series of Star Trek leans on each other.
On the second shelf lies her calculator, a bottle of tums, Aspirin and turmeric. Then I notice a tube about five inches long, resting in the corner by the picture of her and her best friend, Kiyomi, at Comic Con. Both are smiling with incredulous looks of disbelief on their faces with the star of Constantine. Laura’s hair reaches down to her waist.
I ask if this is the Humira, the drug she has to take once every two weeks. She nods, grabbing it off the shelf and showing it to me. The needle is about ½ inch long, and she has to insert it either into her leg, or her stomach. The painful self-inflicted medication will hopefully put her on track to remission while reducing the symptoms of Crohn’s such as severe abdominal pain, fever, diarrhea and weight loss.
This type of treatment is expensive. For one shot of Humira it was about $1,600, but the family insurance she is on recently covered all but $25.
Readjusting to the news that she has a chronic illness, she explains, was probably one of the hardest things she’s ever done.
“Some people wake up early, get stuff done, go to class, do their homework, have time to watch stuff and walk the dog. For me, I have to rethink ‘okay I have this much energy, what do I do with it?’ I have to prioritize. And because [Crohn’s] changes so frequently, I have to be accepting of the changes.”
Now, five months after her surgery, Laura still has a hope of being accepted into veterinarian school. Once a week, she attends a beginner’s ballet class in the northwest of Calgary. Exercise, specifically light exercise, is something that is recommended to help those dealing with Crohn’s disease. Having done ballet when she was little, she thought that getting back into it would be something that could help her get away from the stresses of adjusting to life after surgery.
“In ballet you have to focus on being graceful and having good posture, and that’s something that I thought would be good for me,” said Laura. “Then [good posture] is something to work towards, and I think especially since I spent all those months hunched over, it’s a good thing to work towards.”
Her hope is by this time next year she’ll be in remission.
“Usually, they say about every 10 years you’ll need surgery,” said Laura. “That can be plus or minus – usually minus. I’m hoping that I can have those periods of remission and less pain and be able to do stuff with my life. Still be able to go to school, still be able to try to live – to travel.”
Perhaps the most positive thing about the diagnosis is that she’s gotten stronger. Though she lost 20 pounds, and could barely take a couple steps after surgery – she’s now jogging almost every night. She insisted on completing the winter semester with a workload of three classes, and is looking for a research job for the summer.
“[Being diagnosed with Crohn’s] proved how strong I can be,” she told me. She’s scrolling through the list of actors and favourite characters that are coming to this year’s Comic Con, telling me who is coming and bursting into laughter at different intervals – her laugh hasn’t changed.
“I went through that, and it wasn’t easy, but I did it without completely breaking.”
Editor: Janice Paskey | firstname.lastname@example.org