It’s just about noon, and Nikita has already been to the bathroom four times today. She’s having what she calls a “colitis morning.”
Yet to see her sitting at a café table, chamomile tea in hand and a bright easy smile on her pixie face, it’s very hard to tell that she’s experiencing a burning sensation on her lower left abdomen and the all-too-familiar exhaustion that often accompanies flare-ups.
To Nikita, this juxtaposition of perception and reality is what makes her disease invisible to the outside world. “Colitis isn’t like getting heart disease or diabetes,” she explains, “Nobody talks about it; today is a perfect example. I’m feeling sick but you can’t tell.”
Nikita wants to change that by building empathy and bringing inflammatory bowel disease out from behind the bathroom door by talking about her colitis with anyone who cares to listen.
“I am very open about my disease because I want awareness. I try to be an advocate all day, every day. In general, I think people have compassion and are interested in learning about it.”
Of course, that’s not true of absolutely everyone. For some people, any talk about poop is too much information. Take Nikita’s former boss. Not only was he unsupportive of her health needs, but to her it seemed that he thought she was “bluffing” about her symptoms and treatment needs. As other colitis sufferers can attest, she most certainly is not faking anything. Moreover, the stress of a negative work environment only exacerbated her condition. That’s why two weeks ago, Nikita decided to quit her high-pressure finance job and start looking for a position — or maybe even a whole new career — that will be more conducive to her health.
Nikita was a third-year university student at UBC’s Sauder School of Business when her disease surfaced. At the time she was 22 and a recent immigrant to Canada (she and her family moved here from Chandigarh, India, when Nikita was 18). She had just started her first internship — an exciting position on the trading floor of a major Canadian bank — when one early morning at work she found blood in her stool. “I was shocked. It was scary. And then I went again and there was fresh blood and I didn’t know what to do.”
She ran across the street to a pharmacist but his only advice was that she should see a doctor, so Nikita made her way to a nearby walk-in clinic. The doctor there prescribed antibiotics, which only served to add diarrhea to her increasingly bloody stools.
Over the next couple of weeks her symptoms worsened. By the time she took herself to the emergency ward at the Vancouver General Hospital, Nikita had been experiencing bloody diarrhea “10 to 15 times a day.” It would be another 10 days — almost four weeks since her first symptoms — before the gastroenterologist gave her a scope and diagnosed ulcerative colitis. Nobody in her family has a history of IBD, so Nikita was in for a big learning curve.
She immediately went on prednisone, which calmed her symptoms but came with its own set of side effects, including a “moon face” and possible long-term health risks. Nevertheless, over the next year she cycled through numerous rounds of prednisone and one unsuccessful test of the anti-inflammatory drug Mezavant.
By that point she had graduated from UBC and was preparing to move to Toronto to start a job with the same bank she had interned for in Vancouver. Unfortunately her disease was still very active. Worse, she had no support system in Toronto.
Nikita’s health continued to deteriorate as she immersed herself in a career that included early mornings, long days and late nights entertaining clients. As she recalls one particular low point, Nikita, an eternally positive person, shakes her head with amazement and laughs that she made it through. “I remember one surreal experience. My colitis had gotten so bad and I was having trouble seeing, maybe from the prednisone, so I ended up in the ER at a downtown hospital, and because I didn’t have any family or anyone in Toronto when I was discharged in the middle of the night, I had to walk home alone.”
But Toronto wasn’t all bad for Nikita. In fact, it was there that she finally found a great GI doctor. He prescribed Imuran and, for the first time since diagnosis, she went into remission. That blissful state lasted for a year, but by the time Nikita was preparing to move home to Vancouver in 2017, she was experiencing active colitis flare-ups again.
Fortunately, before she left Toronto, her doctor referred her to Dr. Greg Rosenfeld of The IBD Centre of BC.
“I got so lucky,” asserts Nikita, “Dr. Rosenfeld is awesome and so is his assistant.”
Dr. Rosenfeld reviewed Nikita’s files, performed some tests and ultimately started her on the biologic Entyvio. Almost immediately she was back in remission.
She wants everyone with colitis or Crohn’s disease in British Columbia to have access to the kind care she has found with Dr. Rosenfeld and the team of nurses at the The IBD Centre of BC. Case in point: when Nikita told them that her boss didn’t believe she was taking one afternoon off every month to attend her two-hour Entyvio infusion sessions, the nurses at the infusion clinic made sure to put the IV tape in a conspicuous spot, “So that when I got back to work it would be obvious that I wasn’t bluffing.“
Unfortunately, about a year ago, despite the care she’s received at The IBD Centre of BC, and in conjunction with a lot of stress at work and the aforementioned boss, she has started having flare-ups “here and there,” including this morning.
Along with the belly discomfort, extreme fatigue and frequent bowel movements, like many IBD patients, Nikita also suffers from some IBD-related PTSD. For her these are triggered every time she enters a place where she’s had a bad colitis experience. Right now that’s Whole Foods Market.
“My brain will not let me forget that I had a bad experience at Whole Foods, so now every time I’m there I have to run to the bathroom.” Even though Nikita believes this reaction is primarily psychological, she can’t deny the real physical manifestations. “The problem is that if I try to control that Whole Foods stomach ache by telling my brain to shut up, it just gets worse and almost feels like an ulcer inside me bursts.”
She says these mental triggers are “more scary than actually when I’m sick,” explaining, “When I’m sick I know how the disease works and I don’t leave the house because I know I need to be close to a toilet, but in situations like this it’s harder to control because they are unpredictable and take me by surprise. Now I’m scared to go the grocery store.”
Given that she’s been experiencing these physical and emotional symptoms, as well as more and more “colitis mornings,” Nikita knows it’s probably time to try a new treatment. But that prospect comes with its own set of fears. She says, “I just want to go back to the state where everything was under control and I was in remission. It’s scary for me that Imuran worked so wonderfully for almost two years and then it didn’t, and now the Entyvio seems to be doing the same thing. It feels like with both these medications my body was just in borderline control because the minute I experience stress it throws off the equilibrium.”
To get the equilibrium back, and before she tries any new medications, Nikita is making some big life changes in an attempt to manage her disease and her stress. She says that in this, her mother is her inspiration and her teacher.
“My mom is such a gem,” she says, “She taught my brother, sister and me one thing — the power of optimism,”
“Sure, it would be good if we could find out why I got colitis and what we could do to cure it, but I think the more realistic state is that given this is not going away, what’s the best I can do under the circumstances? My mom has always looked at things from that perspective and I feel that I do, too. It’s like a math equation: Given X is this, how would you solve for it? There’s a constraint and it’s unfortunate, but we can’t dwell on it, so what can we do to make the most of it?”
In Nikita’s case, optimism and solving for X means taking some time to be intentional about her next steps. She’s learning transcendental meditation, has taken up acting and is always trying to watch her diet and learn what foods she needs to avoid – kale, lentils and spicy foods top the list of no-nos.
There’s also dancing. “I’m a positive person. The only time I get bogged down is when I go to the bathroom and I feel like the energy from my bones and my joints and everything is getting sucked out of me. That makes me feel sad and dejected a little, but I come out of it quickly. Maybe I don’t feel good right away, but I get jumpy and dancy anyway.”