Before we start, this isn’t a sad story about a diagnosis. I want to shine a light on a so-called “bathroom disease” and show its complexity, challenges, and why its misunderstood.
I never openly talked about my disease because I didn’t want to be pitied.
Now, I have the chance to tell the story of my autoimmune, inflammatory bowel disease (IBD).
This is how I became the colitis queen.
The Bloody Beginning
There are two forms of IBD: ulcerative colitis and Crohn’s disease; the latter is more severe. Crohn’s and Colitis Canada says ulcerative colitis affects only the colon while Crohn’s disease affects anywhere in the digestive system, from the mouth to the colon.
What is ulcerative colitis? I won’t start with the dictionary definition. Imagine it — gut-wrenching, excruciating stomach cramps and 10 daily bathroom trips filling the toilet with bloody diarrhea. Fun, right?!
I was diagnosed with ulcerative colitis in August 2019 — at the fresh age of 21 — before starting the Creative Communications (CreComm) program at Red River College. A couple of months before my diagnosis, I started frequently visiting the bathroom to poop my guts out. I’d wake up at 2 a.m. with a bullet in my stomach while Naruto running to the toilet.
I succumbed to migraines during these months and popped many Advils to try to kill the pain. The head-throbbing pain was excruciating to the point where I wouldn’t have the capability to do anything except try to sleep it off. I told myself these migraines resulted from the anxiety of starting school again after a year of being overworked as a full-time Best Buy employee.
I ignored the constant migraines and poop sessions for months until I finally decided to visit a doctor to make sure I wasn’t dying from blood loss.
My family doctor referred me to Dr. Wayne Manishen, a gastroenterologist.
A month later, I’m in Dr. Manishen’s examination room. The walls and colour scheme of the office are puke green, beige, and grey. The LED lights are too bright and wash the life out of the room.
While I recalled my time as a four-year-old to Dr. Manishen, I remembered playing with beaded rollercoasters in a waiting room in the Health Sciences Centre. My mother told me I was getting a blood test while I stared at the stuffed animals hung by strings on the ceiling. Little did I know, doctors were investigating me as a colitis patient.
My mother told me I’d wake up at 4 a.m. to go to the bathroom regularly. She’d have to take care of four-year-old me even though she’d work the next morning.
Luckily, after my colitis treatment at four years old, I started feeling healthy again. I fell into my colitis doom again at 21.
Someone with IBD could go through cycles based on the disease’s severity. This is dependent on how their digestive system responds to treatment and medication. It can go from dormancy to flare-up, to possible hospitalization from difficulty treating and to dormancy again.
Dr. Manishen said IBD is hereditary. People with IBD could have onsets either in their childhood, teenage, adult, and senior years.
“Why that happens — nobody knows. It’s an unpredictable disease,” said Dr. Manishen.
He thinks medications, antibiotics, and anti-inflammatories can trigger a flare-up — each of which I’ve taken a lot of in the last couple of years.
Dr. Manishen’s patients vary, but most of them are in their 40s and 50s. Doctors can treat someone with mild colitis flare-ups for six months, and depending on if the treatment works or symptoms disappear, they won’t come back.
Dr. Manishen mentored a specialist who had a patient who lived with Crohn’s disease for 50 years. The doctor diagnosed them at 12 years old; they had an ileostomy (a surgical procedure where an opening is created from a person’s small intestine to the outside of their abdomen, so waste can pass through without contacting the colon); a colon removal; and lived until 85 years old.
There are oral or intravenous (IV) drugs people could take to treat colitis or Crohn’s. More severe IBD cases (typically Crohn’s patients) need IV medications, and in Dr. Manishen’s experience, IV is more effective. Overall, there is no ‘best’ or ‘one’ treatment for IBD.
After Dr. Manishen diagnosed me, I had to start taking prescribed medication. I was popping two steroids and four anti-inflammatories daily — a shit ton of pills. I used to be scared of taking two Advils a day when migraines attacked me, and here I am taking six pills a day.
Classes started the last week of August 2019, and I had to bring my pills to school. Carrying a pill bottle the length of my head around with me was mortifying, but I had to take the steroids with a meal. I was never hungry in the mornings, yet by the time I sat in class, my stomach started grumbling.
During my break, I’d go to Tim Hortons to buy a grilled sausage breakfast wrap to pair with my pills. Dr. Manishen told me spicy foods trigger my flare-ups, which made me sad because I love spicy food. The chipotle sauce at Tim Hortons is the mildest of spicy, and I couldn’t resist.
Being at school with colitis flare-ups was difficult. I’d be uncomfortable, and I’d always worry. Tight pants were never an option because sitting down while my pants suffocated my intestines would only trigger my cramps and intensify my need to go to the bathroom.
These pills acted slowly and only reduced some of my symptoms. I’d still have to go to the bathroom several times daily and frequently felt like someone was punching my gut.
I’d visit Dr. Manishen for monthly check-ups; I told him how the pills aren’t doing much for my symptoms, and he, like most doctors, said, “keep taking them, and we’ll revisit next time.”
Dr. Manishen scheduled a sigmoidoscopy in November, which is a more subtle version of a colonoscopy — it only views the lower part of the colon, not the entire colon. I remember having to miss an important class in my public relations course.
The sigmoidoscopy gave my doctor a better understanding of my disease’s severity. The procedure went well, and I got to see what was happening inside my colon — there was inflammation and bleeding.
Later in November, I was working part-time at my new job. Working there was hard on my body because I’d be fatigued, and my back hurt from standing in my tight-ass pants. Luckily, there was a washroom in the back room, and we didn’t have many customers.
One day during a shift, I started feeling a sharp, throbbing pain in my lower back. I didn’t know the exact source of the pain, but it was somewhere in my lower back near my inflammation. This pain often attacked at night; it was unbearable to the point where I’d wake up crying.
My supervisor sent me home, and I called my mom to pick me up from work. I got into the car crying while imaginary needles stabbed into my back. She didn’t know what to do, so she took me to the Grace Hospital emergency room.
We arrived at 1 p.m., and the nurses took me in right away. I told the doctor I was diagnosed with colitis in August.
The doctor ordered a CT scan while the nurses drew three vials of blood, checked my blood pressure, hooked me to an IV, and gave me two T3s to ease the pain. The doctor said my white blood cell count was high.
I felt like a zombie waiting six hours for my scan while being high on T3s. I couldn’t eat anything because they needed to inject me with a contrasting agent to perform the CT scan.
After finishing the scan at 10 p.m., the doctor reconfirmed my colitis, prescribed me T3s to subdue any inflammatory pain, and called Dr. Manishen about my visit.
The year 2020 rolls in, and in January, I visited Dr. Manishen about my progress. I told him the six steroid and anti-inflammatory combination is still not working, so he prescribed Xeljanz, which requires me to get three vaccines. Some medications like Xeljanz suppresses peoples’ immune systems and makes them more vulnerable to other illnesses. With this medication, I had a higher risk of getting shingles, cervical cancer, and the flu.
The medication worked slowly. I didn’t notice a significant improvement until a few months later.
Diet: The Almost Cure
During my time on my new medication, I learned what triggers my flare-ups: greasy foods, processed meats, caffeine, and alcohol (sadly). In August 2020, with all the free time I had and my five-star Animal Crossing: New Horizons island completed, I thought I’d clean up my diet to see what happens to my flare-ups. I decided to try a vegan diet for one month. The only non-vegan food I didn’t cut out was eggs.
I noticed I ate more and felt healthier. It made me realize I could make almost any dish vegan, which was super fun to experiment with.
I became addicted to Beyond Meat’s Beyond Sausage. I still feel myself gravitating towards plant-based meat more than actual meat.
One of my favourite things to make, which I still make almost every day, is my Beyond Sausage breakfast bowl. It has garlic fried rice, two fried eggs, and Beyond Meat’s sausage.
When I ate at restaurants, I’d sub meat for tofu or any alternative they had. At one of my favourite restaurants, Aroma Bistro, I asked them if they could make one of their dishes with tofu instead of beef. They showed me an item that wasn’t on their menu yet! The Tofu Kimchi Rice Bowl is my favourite thing to order now.
My “vegan” diet made my digestive system feel more relieved. It had to adjust for the first couple of days, but I noticed less blood, diarrhea, cramping, and bathroom visits.
This diet also taught me eating more sustainably is an extra step but just as delicious as an average diet. Anyone can eat more sustainably by swapping out meat or dairy in their meals.
Crohn’s & Colitis Foundation says to avoid high-fibre foods, beans, fresh fruit, and raw vegetables. A few other sources I read said the same thing, but I ate all of those foods and didn’t notice any difference in symptoms.
The list included spicy foods, caffeine, alcohol, and dairy, which I avoided.
I wouldn’t say this diet and new medication cured my flare-ups, but they did subside. Since then, I adopted a flexible pescatarian diet, stopped having major flare-ups, and started doing day-to-day things again without worry, including working out again.
A Formidable Fight
My story is only a glimpse of the disease’s severity; I consider myself lucky. I stopped having flare-ups a year after my 2019 diagnosis. Others live with IBD for the majority of their lives.
Kim Daley, 37, has had Crohn’s for 25 years. She was first diagnosed at age 12 and had symptoms such as frequent diarrhea and cramping. She ignored and denied her symptoms. She also hid them from her parents because she was afraid of hospitals and doctors.
Eventually, her parents noticed her constant trips to the bathroom, and they started to worry. They decided to take her to the doctor.
Doctors misdiagnosed her with the flu and food poisoning. She would stay home from school while her symptoms drastically increased: diarrhea, fatigue, skipped meals, and body pain.
“I spent more time on the couch than a regular lazy teenager,” said Daley.
When bruises began to pattern her legs, her parents were convinced it wasn’t the flu or food poisoning. They rushed her to the emergency room.
These tender, reddish lumps are a common symptom to IBD patients. A pediatric gastroenterologist diagnosed Daley with Crohn’s in the summer of 1996.
Over the next few years, she’d take prescribed oral medications to suppress her symptoms — but her flare-ups never stopped.
Doctors treated Daley in the late ’90s and early ’00s, so medications were relatively limited. She tried intravenous and oral medications and even tried eliminating dairy products and increasing her protein, but nothing worked.
Slowly, Daley stopped denying her symptoms and accepted her unpredictable bathroom habits as normal. She’d go to the bathroom before leaving the house, noted where all the public washrooms were wherever she went, and accepted her constant pain.
“The pain wasn’t something I was willing to give into or stop doing what I was doing at that age just because I was having pain,” said Daley.
Daley never let her diagnosis take over her life. She wanted to live an average teenage life: hang with friends, play sports, and go to school.
Later, she had her first child, and her symptoms completely vanished. She had a successful, healthy pregnancy.
Two years later, her symptoms returned. Showering, sitting, working, and taking care of her child became difficult tasks. Eating became a chore, and she required a feeding tube to supply her with nutrients. She dropped to 80 pounds.
She took time off work and went on long-term disability. She tried different medications but became too sick and ran out of medication options.
In 2011, she had an ostomy (a surgery to create an opening from an area inside the body to the outside) surgically created. After her life-changing procedure and the last couple of years of more surgeries such as her feeding tube removal and a rectum removal, she slowly started getting healthy. She had two more children.
“I continue to remind myself why I fight; these three kids need their mom,” said Daley.
By 2019, she started feeling healthy again. She has anemia and occasionally experiences fatigue and new manifestations of IBD, but she’s back to a healthy weight and regular diet.
Since then, she’s helped with research and initiatives for IBD. Daley is one of the patient research developers and advisors for IMAGINE, a research network focusing on the association between people with IBD/IBS and gut health, diet, and mental health. She volunteers for the network’s many hospitals, research, and university partners to advise on developing therapies and new treatments. Her primary role is to make sure their innovations align with patients and their values.
She recently completed a Patient and Community Engagement Research course from the University of Calgary. She and other patient researchers across Canada conducted a study on the psycho-social relationship between people with IBD and food. They interviewed many IBD patients and found new methods for doctors to use in clinical practice for newly diagnosed IBD patients. These results are yet to be published.
She hosted a live auction and social gathering for Crohn’s and Colitis Canada and the Winnipeg Ostomy Association and raised over $7000. She also raised over $3000 for Crohn’s and Colitis Canada’s Gutsy Walk with her team, “Got Poop?”, a name that is a nod at IMAGINE’s fecal microbiota transplant study.
And, What About Us?
Kim Daley, Dr. Manishen, and I believe bathroom access is a societal problem for people with diseases like IBD. When people don’t have control over their bodily functions, having to buy something at a restaurant or small business just to use their bathroom is inconvenient. There have been many times I’ve been driving to work or a timely event where I’d have to pull over at McDonald’s or Tim Hortons to use their facilities.
In the United States, they have a Restroom Access Act (RAA) for people living with IBD. The RAA aims to ensure people with IBD and those with ostomies have access to use retail restrooms as long as someone’s working and there’s a safe available restroom — public or employee-only. Crohn’s & Colitis Foundation offers an “I Can’t Wait” membership card to easily show employees without having to describe their condition in a time of crisis. The RAA is in effect in over 15 states.
Daley said she would get side-eyed for using the accessible stall when all the other stalls are full. Accessible stalls should be open for people with physical disabilities and those whose insides are in excruciating pain.
All provinces should fully cover medical supplies and medication for those with IBD. Some provinces don’t fully cover these expenses; for example, Manitoba covers ostomy supplies, but if someone’s home province doesn’t cover them, they’ll pay $100 biweekly or monthly.
Other societal accommodations include dietary options being more widely available in grocery stores and restaurants now compared to years ago, and workplaces are more accommodating to allowing time off.
Guts & Roses, a Manitoba-based organization, aims to fund research, promote awareness, and ensure IBD patients receive the best treatment through donations. The founder, Brad Krulicki, started this organization after his and his son’s Crohn’s diagnoses. Guts & Roses’ goal is to improve the quality of life for people living with IBD. All funds go towards research and treatment development. They’ve raised over $500,000 — half of which went to Crohn’s and Colitis Canada.
The Evolution of the Colitis Queen
Since my vegan diet in summer 2020, I haven’t had a flare-up. I’ve been pooping normally, not going to the bathroom frequently, cramping significantly less, eating spicy food, and drinking alcohol without worry (yay). I’m still taking Xeljanz and iron pills for my iron deficiency, but I started my second year of CreComm stronger and healthier.
My disease has changed the way I live every day, but, as Daley said, I never let it consume my life or define me. It’s a challenge in which I want to succeed.
When I started classes again in January, I started working out four times a week to catch up on the exercise I missed when I was in flare-up mode.
I started visiting a chiropractor in June 2020, which may have reduced my cramping and back pain. I had back pain for almost 10 years and didn’t do anything until it started acting up when I was diagnosed with colitis. My back pain has reduced thanks to Dr. Marc and Dr. Natalie!
I don’t know what did it — I think it was cleaning up my diet. I want to tell myself it’s my resilience and persistence, especially after finishing the hardest and most stressful year of school ever. Whatever it was, my narcissistic Leo thanks me for pushing through it. Go, me!
I wanted to share this story to free myself from the thought of being pitied. Your health shouldn’t limit your ability to have strong relationships with others.
If the people close to you care about you, chances are they’ll ask you how you’re feeling. If you’re comfortable with discussing your health with them, please do so.
I didn’t want to keep this “shitty” secret anymore. We must reduce stigma around health conditions and take care of one another.