My Dearest Colon
Andre Anthony Thurairatnam/Staff Reporter
7:13am: March 23rd, 2015
The pain that woke me up that spring morning was unlike anything I had felt before. And, believe me, I was no stranger to pain. In fact – less than a year prior I was in a serious motorcycle accident that nearly claimed my life.
Had I known I would be in this state of agony, I almost wish that accident would’ve just killed me then.
The excruciating throbbing in my lower abdomen was only heightened by the intense feeling of nausea in my tightened, upper-chest. Blurred vision, and dizziness from months of physical and mental fatigue finally caught up to me.
I used whatever remaining strength I had left to drag myself the 10 feet from my bed to the bathroom. The pressure in my chest was building - the nauseous feeling quickly growing more forceful. Even with the severe dehydration putting me in a state I would barely consider conscious, my mind refused to block out the pain.
Even lifting the seat of the toilet bowl expelled more energy than my body was ready to sacrifice. Almost, as if on cue, the seat was raised to the tune of dry heaving – loud enough to wake up my whole household – quickly followed by an uncontrollable attack of vomiting, spewing more and more blood each time. Each bout making me feel deeply weaker than the last, I eventually collapsed on the tile bathroom floor.
My eyes, still open, could make out the blurred expression of shock, worry, and helplessness on the faces of my Mom and three younger sisters as they stood in the bathroom doorway. At 24 years old, my 220 pound, muscular frame laying there pathetically. I could barely manage to whisper, “call 9-1-1.”
This was just the beginning of my journey with Ulcerative Colitis.
It’s a tricky disease: The auto-immune disorder, along with Crohn’s Disease, are a pair of Inflammatory Bowel Diseases that affect one in 150 Canadians every year.
An abnormal response in the body’s immune system causes sections of the gastrointestinal tract to become severely inflamed and ulcerated – leading to a series of symptoms that can vary from subtle to dangerous.
I can’t say I wasn’t warned.
Things weren’t normal for months leading up to that March morning. The symptoms started out very insignificant – almost mimicking an upset stomach or indigestion.
That previous October, I’m sitting inside Habibiz Café around 11pm, a hookah bar in East Toronto best known for it’s association with Toronto rapper Drake (the owner happens to be a good friend of his).
The dark room was lit only by the dim, multi-coloured strobe lights atop each red booth – which when lit, you could make out the never-ending swirl of smoke. Rap music filled the place just as heavily as the smoke – low enough not to be too overwhelming, but loud enough that I was stretching my vocal cords to converse with my cousins.
The four of them were visiting from the UK, and the sheer spectacle of this place made it a must- see while they were here.
We had two hookah pipes going. I don’t smoke shisha often – maybe once every six months or so, if at all. I enjoy the atmosphere more than anything: it’s relaxing, fun, makes for good conversation – it’s something to do. And that’s exactly what we were doing. It isn’t often I get to see my cousins from across the pond, and we were all having a great time catching up.
Before the clock hit midnight, however, things started to get a little weird for me. Mid- conversation, my stomach turned: I started feeling what I thought were bad cramps from gas.
Must’ve been something I ate.
Then, not even 10 seconds later I was immediately hit like a ton of bricks with a feeling of uncontrollable urgency. In my 23 years of living, this need to go was unlike anything I’d ever experienced – in all senses of the word, this was an emergency.
I quickly shot up and excused myself from the table, stumbling over my own feet in the dark, club-lit bar in a mad dash to find the restrooms. I B-lined it straight to where I assumed the washrooms would be, no time to ask – heavy bass and Drake verses were my backdrop as I frantically found the only toilet they had on the opposite side of the bar.
Now at least I knew where it was.
This was key, because not even 15 minutes after I sat back down to rejoin my cousins, the urgency hit me again like a spasm, instantly shocking my body into proper posture. And again, I threw myself up from the table and headed for the toilet (trying my best to be as inconspicuous as I could –after all, this was kind of embarrassing).
Obviously I didn’t do a very good job covering it up. I sat back down at the table and my cousin Dean had a slight look of concern on his face.
“Hey man, are you okay?”
I explain to him I’m fine – it must’ve been something I ate at the bowling alley earlier.
But now I understand why Dean looked so concerned. He was diagnosed with Ulcerative Colitis in 2010 and had been struggling with the disease ever since. Doctors say you’re more likely to become diagnosed with the disease if you have a relative with it. He subconsciously recognized the symptoms.
On his trip down here, Dean was actually on Prednisone – an extremely powerful anti- inflammatory medication. Prednisone is categorized as a catabolic steroid because it mimics the naturally-occurring hormone cortisol in your body. For sufferers of IBD, it’s a miracle drug: the human body naturally produces around 7mg of cortisol at its peak every morning, and one of its main purposes is to help the body fight inflammation – which in the case of ulcerative colitis, cuts down a lot of the inflammation to the digestive tract caused by the disease, particularly the colon. Dean was on about 40mg of Prednisone that night at Habibiz.
Things got worse over the next few weeks.
I was making trips to the washroom around five to eight times per day. I tried Imodium, Pepto Bismol – all the typical remedies. No luck. It wasn’t until I noticed a bit of blood that I reluctantly made a doctor’s appointment.
I say reluctantly because that’s how I’ve always been: not reluctant to see doctors, but reluctant to ask for help. It’s a cross between not wanting to burden anyone, and this tough guy mentality passed on from my father. Never will I seek out help until it’s usually too late, and if I am asking for it – it’s serious.
I’m sitting in the office waiting for Dr. Tak Lo – he’s been my family doctor since I was born. My Mom became a patient of Dr. Lo when she immigrated here as a teenager from Guyana. His office was right across the street from her humble apartment in Scarborough.
From the time I first remember going in for checkups, he’s had the exact same medical posters on his wall: one of the digestive tract, a human anatomy chart, and a standard vision test with the big ‘E’ right at the top.
I’m performing the vision test on myself (as I usually do), only this time I’ve come to the crushing realization I can’t make out the bottom couple rows of letters. My last optometrist appointment (which I’ll admit was some years prior) I was told I had eyes like a hawk. Now, I was straining to differentiate between an A and an R. It must’ve been because of the new(ish) job I was working: I was a high-risk consultant at Rogers Communications in downtown Toronto where I was staring at a computer screen for the better part of eight hours a day. I started working there part-time in 2012 during my last year at the University of Toronto. The job paid well, had a good benefits package, and I kept it on a part-time basis while I was freelancing and looking for career work in the journalism field.
Dr. Lo burst into his office like a tamer version of Kramer opening the door to Jerry’s apartment. He always has a dopey, childlike smile on his face when he talks.
“Hey, hello, hello – what can I do for you today, Andre?”
I tell him what’s been going on.
“Is the blood bright red, or dark?” he asks, almost like a reflex.
This is a question, which although at the time I thought was a little odd, I’d be asked dozens more times throughout this entire ordeal.
I tell him I’m unsure – after all, who can really gauge the degree of redness? I didn’t know if the blood was darker or brighter, I just knew it wasn’t normal.
Dr. Lo told me it looked like I had a case of Irritable Bowel Syndrome, to take Imodium to help the diarrhea, and to start taking a probiotic supplement (he recommended Align) to help with all the other symptoms. As for the blood: his theory was that with me straining myself in the washroom multiple times per day, it was most likely fresh blood from a cut and nothing to be too alarmed about.
I started myself on the probiotic, and although I was convincing myself I was getting better, things were undoubtedly getting worse.
By the new year, I was up to around 10-12 washroom trips per day. Noticeably more blood. Now, every time I ate, I had about a 15-minute window before I would need to be in walking distance of a restroom to feel at ease. If I had to go out, I would purposely not eat to avoid embarrassment and discomfort. If I had already eaten and was invited out – I’d have to make an excuse not to go.
At the time, I was working the evening shifts at Rogers. My day’s would typically have me working until 9pm, and then heading to the gym right afterwards. By the time I finished my workout and hopped on the train home, it would usually be around midnight. That’s when I would have my first meal.
I’m not completely ignorant to my health – I’m just stubborn. I knew these habits were bad for me, but it was the best way for me to keep the symptoms at bay while I needed to do other (what I felt were higher priority) things, like performing at work.
It would eventually catch up to me.
Eating my first meal so late meant I would be up all night with stomach pains, and bathroom trips every 15-20 minutes. I hadn’t had more than a couple hours sleep consecutively in weeks.
This caused more problems.
It’s around 7:30pm. I’m at work sitting in front of a five-year old DELL computer monitor set at the wrong resolution (sometimes I’d come into work and couldn’t be bothered to change it – probably why my vision was deteriorating at such an alarming rate). My dark green and grey cubicle was only accented by a small, out of date Blue Jays schedule from the previous season, fixed on my silver filing cabinet to the bottom left-hand corner. The line of desks stretched from end to end in rows of about 10, mine toward the centre.
While on the clock, I’m completely focused on my work – speaking with clients on their financial accounts/queries. However, when I need a quick break (usually after a tough account or passionate customer), I could always swing my chair around and count on Suki for a quick conversation about anything to get my mind off the job.
Suki sits almost directly behind me. She’s always very pleasant, and easy to talk to – it’s all part of her bubbly personality. She’s about a decade older than me, in her early 30s – and although we only see each other at work, we’ve developed a bit of a repoire over time.
“So Superman, what are you working out today?” she yells over at me with a chuckle. “Let me guess – shoulders again?”.
Suki’s no stranger to my love for bodybuilding. She would always feel the need to comment on my stack of FLEX magazines I’d keep at my desk. The covers would feature pro bodybuilders like Phil Heath or Ronnie Coleman – and I’d hear almost every shift how their muscles were “gross” or “too big”. She always seemed genuinely interested in how my personal workouts were coming along, however.
I swing my chair around, ready to give one of my smart-ass retorts. Probably something like well I know these shoulders improve your view in this office or they don’t call me the man of steel for no reason.
I distinctly remember wearing my Superman T-shirt that day, specifically because of how ironic it was about to feel.
I open my mouth to deliver my carefully crafted one-liner. Nothing comes out. My view of Suki’s deep red hair is being blocked my spots of black in my vision. My brain feels like it’s shutting down, and the ability to talk is eerily similar to the inability to scream during a nightmare. My heart-rate elevates, my breathing gets progressively heavier, and my mouth starts to dry up. I’m actively fighting to stay conscious.
Suki doesn’t notice. She’s back on the phone speaking with a client.
The feeling lasts for about seven to 10 seconds, then passes. I’m still breathing heavy. I can feel my heart pounding a mile a minute. Panicked, I grab my water bottle and take a sip.
What just happened?
I’m anxious. I’m scared. I remember thinking these are the signs of a stroke. I’m self-diagnosing everything in my head: Maybe I’m dehydrated? Maybe it’s the lack of sleep? Maybe it’s my eating habits? Was this related to all the blood loss? Little did I know I was trying to piece a puzzle together without seeing the picture on the box.
I’m back in Doctor Lo’s office a few weeks later.
By this point, that same haunting feeling I experienced for the first time as Superman was now part of my daily routine. By the early evenings, I would battle the urge to black out at least twice a night – usually when I’d start to get a bit fatigued, physically or mentally.
The washroom trips were now up to 15 times per day, with significantly more blood.
I explain to Dr. Lo I’ve had to stop going to the gym, I’m terrified to drive, my anxiety/stress levels are through the roof – I’m no longer able to function normally.
“Your blood pressure is normal, just a bit low – but that’s typical with athletes. I think you might be having anxiety attacks,” he tells me.
He asks all the typical questions about stress in my life, and things that could trigger episodes with anxiety/panic. He recommends I take vitamin B supplements to raise my blood pressure a bit in case I may be experiencing hypotension, and sets up an appointment for me with Doctor Keith Wong, a gastroenterologist at Centenary Hospital in East Scarborough – the same hospital I was born. Unfortunately, the earliest appointment isn’t available for at least a few weeks.
I’m no longer well enough to go into work.
My entire demeanour has changed. I’ve gone from a high-energy, ambitious, social butterfly to an anxious, lethargic, homebody. I’m physically unstable and mentally unequipped to deal with what I’m going through – mostly because I still didn’t know what I was going through.
For weeks now, my mom has been insisting I check myself into emergency room.
“Andre, blood is an emergency. What you have is not something insignificant,” she would constantly lecture me.
She was right, though. It was an emergency. But me being me, I’d convinced myself the hospitals had more pressing issues to deal with. Stuff like bullet wounds, burn victims, heart attacks – there were a million things higher up on the priorities list for them, and I didn’t want to be that guy who was wasting valuable time and resources.
My mom was very worried. She had enough stress to deal with herself – allowing myself to fall even more ill was the last thing she needed to deal with. So, when I finally made the call to check into the ER, it was half for her peace of mind.
She accompanies me to Scarborough Grace Hospital that evening around 8pm. It’s not a far drive from my house –probably 10 minutes. Although not the biggest, the hospital looks like any other. Upon entering through the automated sliding glass doors of the emergency, it isn’t made very clear where you sign-in. To the left is the initial waiting area: rows of chairs all facing a mounted, 30-something inch HDTV. It’s on a 24-hour news channel. The glass windows to the right of the chairs make way to see the constant, almost hypnotic stream of ambulances, paramedics, and police entering and exiting the emergency circle.
Directly ahead are the doors to the observation rooms and doctors. People are being called in one-by-one from the waiting area – others are being wheeled in on stretchers from the ambulances outside.
To the right is where I eventually sign-in. The secretary gives me a wristband and tells me to see the nurse sitting at the doors which separate the waiting room from the observation area.
“What brings you in here this evening?” she asks. I explain.
Here’s what I would shortly realize about myself: although I was at a point where I was both physically and mentally exhausted, a point where I desperately just wanted answers, a point where all I wanted was relief – I didn’t look it at all. On the outside, I looked like a healthy 24- year old male. No one could have ever guessed how sick I was by simply looking. Albeit, I did do my best to hide it.
“How many bowel movements per day?” she follows up. By this point I was at 15-20 times.
“Is there blood every time?” she probes.
There was. I can’t remember the last time I didn’t see the toilet bowl dyed red. I was losing blood at an alarming rate, but it was so commonplace to me by this point – it didn’t seem like a big deal.
The nurse stops her data-entry and turns to me with a look of sincere frustration. “And you’re only coming to the hospital now!?”
I was an emergency.
She takes a few vials of my blood and tells me to take a seat in the waiting area – it might be a few hours before I can see a doctor.
As I’m sitting in the waiting area – I think back to 10 years ago when I was in this exact seat after my first high school football game of the season. My mom was with me then too when the X-rays came back showing I had broken my left arm during the opening kickoff. I remember waiting with my English Lit notes until 4am, desperately sifting through notes with only my right hand in preparation for the next day’s quiz. My mom smiles as she shakes her head.
“You know you’re not going to school tomorrow, right?” she says with a chuckle.
She knew exactly what I was like – school always came first; health was never a priority. Now, here we are a decade later: everything seems oddly familiar. As I’m complaining about taking time off from work, paranoid about losing my job, my mom gives the same advice:
“How can you expect to go into work if you never let yourself get better?”
I’m finally called in to see the doctor.
I’m brought to a small examination area, where I’m greeted by a 40-something blonde woman. She’s wearing a white overcoat and has a giant smile on her face. She introduces herself as the ER doctor and draws the green curtains surrounding the bed.
“So I understand you’ve been having some blood in your stool,” she states with more enthusiasm than one should have at this time of night.
I’ve now memorized the monologue. I spit out my symptoms like an automated machine.
“Hrmm – I’m going to have you do a stool sample. I just want to rule out a c. difficile infection,” she says.
Then, she asks a question that starts to have things make sense in my mind. “Do you have a family history of Crohn’s or colitis?”
I immediately think of Dean. Not just him, but his younger brother Jordan, and his father, my Uncle Mike. All sufferers of ulcerative colitis.
“Your symptoms sound very crohn-y,” she explains.
Most people who are diagnosed with one of the two diseases already have a family member with it. It was starting to become glaringly obvious what was going on – but I still didn’t know for sure.
The doctor explained that there wasn’t much else she could do – and I would have to wait to see my specialist who would diagnose my condition. I was discharged.
Over the next two weeks, as my symptoms worsened, I would check myself into the emergency twice more – and twice more I would be sent home with no answers.
I was very ill. I’d lost about 20 pounds. The dizzy spells were increasing, feelings of nausea were more prevalent, and bouts of extreme pain in my lower abdomen were all in addition to the 20 plus bloody bowel movements I was having each day.
I’m finally in the lobby of Centenary Hospital for my consultation with Dr. Wong. I’m registering on one of their electronic sign-in booths. An elderly woman wearing a volunteer vest asks if I need help. I’m done checking in, but I ask her for directions.
“Where can I find the digestive diseases unit?” I ask.
She tells me to hang a left down the lobby at the elevators, and to continue walking until I see the waiting area.
“Do you need a map?” she follows-up.
I’m fine. I find Dr. Wong’s office with no hiccups. As I’m waiting to be called in, I notice people being brought into recovery on stretchers. Oxygen masks over their faces, laying on their sides in teal hospital gowns. I can only assume they are being brought out from colonoscopies. It looks bizarre.
I’m called in.
Dr. Wong enters the room. He’s a tall, thin man with greying hair and thin-framed circular glasses. He doesn’t walk with much confidence for a man wearing a white overcoat with a stethoscope hanging off his neck. His voice sounds similar to Kermit the frog. He talks very slowly.
“An-dre-a, Dr. Lo referred you to me?” he says, pronouncing my name wrong.
I tell him yes. I take a deep breath and give him the entire story from start to finish. I want to be
detailed – after all, if anyone, he’s the one who’s going to fix me.
“We will do a flexible sigmoidoscopy in a few days,” he says very matter-of-factly. “There’s no
prep. Follow these instructions.”
He hands me a photocopied piece of paper with instructions telling me not to eat or drink before the procedure.
“We don’t have to put you out for it – it’s a very quick look into your lower intestine,” he reassures me. “Only takes 10-15 minutes.”
I actually feel a bit relieved – the last thing I want is to look like one of those zombies on the stretchers I saw earlier.
When I’m back for the procedure a few days later, I am in no way prepared for what I’m about to endure: I change into one of their gowns and take a seat on the examination room bed where a nurse greets me.
“Before you go in, I’m going to administer a fleet enema – do you know what that is?” he asks me, trying not to make a big deal of it all.
I don’t. He pulls out what looks like a water bottle, with a long tip at the end.
“I’ll be inserting this tip into your rectum, and inside is just water to flush out your system so Doctor Wong can see better during your procedure,” he says. “Hold it for as long as you can before you release it.”
I act like it’s not a big deal, but I’m absolutely dreading this. He instructs me to turn onto my side, with one knee in front of the other.
“Okay, here we go!” he says enthusiastically, like a doctor giving a vaccination to a small child.
He administers the enema. I feel a cold flush run through my digestive tract. It’s over in a few seconds. It’s a bizarre feeling: it doesn’t hurt – it’s a forceful feeling, almost like a controlled urgency.
“All done – try and hold it for at least five minutes,” he says, then leaves the room.
I barely get to the one-minute mark before I jump off the bed and on the toilet seat. Nothing but red.
It’s time for the procedure. I enter a dark-lit room. Dr. Wong is wearing a yellow suit over his scrubs, along with gloves, mask, and a hairnet. He is with two assistants dressed the same.
I’m propped up onto a metal bed, and positioned exactly how I was for the fleet enema. Dr. Wong raises the bed and puts up a metal railing. I notice a giant 40-inch television monitor in front of me. I realize I’m about to see the entire procedure.
I turn my head in Dr. Wong’s direction and my heart sinks. I see him lubricating what I can only describe looked like a six-foot fishing rod. This was the camera they were going to use.
“Okay An-dre-a, I’m going to need you to relax,” he instructs – again pronouncing my name incorrectly.
Before I can even respond, Dr. Wong has begun. The camera is inserted, and I’m in excruciating pain. My right hand grasps the metal railing of the bed, as I moan in agony – the backdrop to my pain, a 40-inch display of a bleeding, blistered colon.
I could feel every small movement – each time the camera turned a corner of intestine, I would yank back on the metal railing, which at this point was starting to bend.
“Andre, we’re going to need you to let go of the bar,” says one of the assistants. “Just relax, we’re almost done.”
Except they weren’t. As I’m trying to block out the searing pain, I notice Dr. Wong fixated on one specific section of my colon. He says something to one of the assistants, but I’m in too much pain to make it out.
“An-dre-a, there are some growths we need to remove and send for a biopsy,” Dr. Wong states.
I don’t know quite what’s happening. I nod in pain as a reflex. Immediately, one of the assistants inserts another instrument, and soon I see it on the screen.
“Three...two...one...go!” Dr. Wong fires off.
I feel a prick, and see the instrument disappear from the screen. He would repeat this twice more. What he was doing was called a colonic polypectomy. Those growths he found are known as polyps, and although most times they’re nothing to worry about – there’s a chance they could be cancerous, or become cancerous. He removed the three polyps he found in my colon using an instrument that sends of a mild electric shock, and sent them off for a biopsy.
Shortly after the third polyp, the procedure was finally over.
While I’m still lying on my side, Dr. Wong answers the question I’ve been struggling to answer for months.
“You have mild ulcerative colitis in your left sigmoid colon,” he says. “I’ll write you a prescription in my office.
If my case was mild, I could only imagine what severe must feel like. Ulcerative colitis works in a weird way: a response in the patient’s immune system causes their white blood cells, which are normally used for healing, to start attacking their own body – in my case, my left colon. Your body, which realizes it’s under attack, creates and sends over more white blood cells to try and heal – unknowingly exponentially making the problem worse. It’s a vicious cycle.
Dr. Wong prescribed me mesalazine pills, a mild anti-inflammatory medication meant to target the colon specifically, and developed for sufferers of ulcerative colitis. I was to follow-up in two weeks.
I didn’t make it to the two-week follow-up.
The mesalazine had no effect. The disease was continuing to eat at my colon. Physically and mentally – I was tapped out, and it all culminated on that March morning.
7:34am: March 23rd, 2015
I threw up twice more in the ambulance en route to the hospital. One of the paramedics gave me a shot of Gravol in my left arm. My mom was at my side in the back of the truck.
“Can we take him to Centenary?” she asks. “That’s where his specialist is.”
The paramedic raises his walkie-talkie and asks his partner to change the route to my hospital. When I arrive, I bypass everyone else in the waiting room, and go straight to observation. The ER doctor sees me immediately.
“Where’s the pain?” he asks.
I can barely talk, I’m so weak. It was hitting me in spasms, and the doctor could see me convulsing as each wave hit me.
“I’m going to give you some morphine, and some more Gravol to help with the pain and nausea,” he says calmly.
Once the morphine drip starts, I feel myself zoning out into a deep sleep.
By the afternoon, I’m stable enough to walk and talk again. I’ve had a series of tests performed on me already today: x-rays, cat scans, blood work, stool samples – it’s all precautionary. We know what’s really going on.
The ER doctor comes in and explains I’ve been admitted – we’re just waiting on a room upstairs to become available.
My mom, dad, and three sisters – along with a few aunts and uncles stay with me in the observation room until late in the evening. Everyone, including my mom (who was insistent she stay the night) eventually leaves by around 10pm. All of us need our rest. It’s been a long day.
I stare around the depressing, pale yellow room. There’s not one window because it sits in the centre of the emergency. The nursing station is in the middle of the 15 or so beds under observation.
The head nurse is around my age, about 5 feet-tall, with jet black hair done up in a bun. She has a familiar look to her.
She approaches me with an electrocardiograph machine, and explains me being hooked up is simply just procedure. I doze off shortly after she fixates the electrodes to my chest.
I’m woken up at 3am by the same nurse.
“You’re moving out!” she jokes. “A room just became available on the eighth floor.”
I slowly gather all my belongings, and throw them beside me on the stretcher. I immediately notice the saline mixture in my IV has done a good job of keeping me hydrated: the light- headedness, and dizzy spells are not as prevalent as they’ve been for weeks. The blood and bowel movements, however, are still a continuing problem. I’ve visited the restroom at least 20 times since I was brought in that morning.
I’m moved into a semi-private room on the eighth floor of the hospital. There’s a thin, light brown curtain separating the two beds. The curtain is already drawn over the bed on the left side – I already have a roommate. He gets the window, which overlooks the parking lot and the plaza across the street where most people park to avoid paying hospital parking. I’m not too upset because my bed is closer to the one washroom we’d be sharing – that makes all the difference to me.
A nurse enters the room to take my blood pressure, temperature, and heart rate – this would be done every 12 hours for my entire stay. She hands me what looks like a long Q-tip in a tube with a label showing my medical information.
“I’m going to need to get you to swab inside your nose for me,” she says with a smile. “All our patients have to do it once they’re admitted”
She gets her sample and leaves me to get some rest.
About an hour later I’m awoken to the sounds of awful moaning – loud enough to wake up the entire floor, mixed with bouts of vomiting. Two nurses enter my room and open the curtain to my roommate.
Something is wrong.
They try and put him at ease. I overhear them mention painkillers, but ultimately they rule against it. The moaning doesn’t stop, and the vomiting continues. Finally, about 20 minutes later the nurses leave. I lie down staring at the ceiling, listening to him moan in agony the entire night.
My mom is back the next morning with a change of clothes, toothbrush, magazines – you name it. We both didn’t know how long I’d be in here for. I threw up twice that morning after my mom arrived. I felt weak. Other than the liquids from the IV, I was on a strict, clear liquid diet for my entire stay.
The curtain separating the two beds starts to open. I see my roommate for the first time: he’s a middle-eastern man in his early 50s. His hair is black with noticeable specs of grey which match his dishevelled mustache. I can see his beery belly even through the hospital gown.
“I’m so sorry about all the noise last night,” he apologizes. He speaks with a thick Persian accent as he walks toward the washroom. “Every time I go for chemo, I have a heart-attack.”
My heart sinks. My roommate had colon cancer. I witnessed him suffer a heart-attack two feet away from me last night.
His nurse walks in as he’s headed to the washroom. He demands he needs to be discharged today, because he can no longer afford to miss work. I had heard him making what seemed like work-related phone calls all morning – but how could he make that a priority? He had colon cancer. Why wouldn’t he want to stay here and get better?
For the first time, I was starting to see things from an outside perspective. I realize how stupid I was putting my health on the back-burner for so long. Had I took action earlier, I probably never would’ve ended up here. I learned things the hard way.
A man wearing scrubs walks into my room. He’s a tall, muscular guy in his early 30s. He stands with an unmistakeable confidence. I remember thinking to myself this guy could probably bench press more than me.
“Hello Andre, I’m Dr. Wesley Leung,” he says very matter-of-factly. “I’ll be your gastroenterologist until Dr. Wong comes back tomorrow.”
I give Dr. Leung the abridged version of my story, and tell him my bowel movements are up to 20 times per day at a minimum.
“What I want to do is another flex sig, and we’ll start treatment immediately based on what I see,” he explains. “Do you have any questions for me?”
I’m terrified. I dreaded having to go through the pain of that procedure again.
“Dr. Leung, is it possible that I could be put out this time?” I ask. I figure it can’t hurt to try. “Normally we don’t,” he says. “But I’ll make an exception for you.”
I feel relieved.
The flex sig went flawlessly. Dr. Leung is standing by me in recovery after the procedure. He explains he’s going to start me on a schedule of IV steroids (prednisone) at 50mg, in addition to the mesalazine pills. He’s confident that based on my level on inflammation – this should get me into remission. I feel comfortable with Dr. Leung. He’s extremely knowledgeable, and at that moment I decide to ask him a question that’s been on my mind.
“Dr. Leung, in the fall I was prescribed a medication called meloxicam by my family doctor to help with the inflammation from a herniated disc in my back,” I explain. “Almost immediately after starting it, I started getting these symptoms...”
Dr. Leung doesn’t even let me continue before he chimes in.
“Non-steroidal, anti-inflammatory medications are a classic trigger for ulcerative colitis,” he states with the utmost confidence.
Doctors don’t know what causes inflammatory bowel disease, but they have concluded that for those susceptible to it – there are certain triggers that can bring the disease out of remission. Some researchers say diet is a big factor (which I was eating scotch bonnet peppers like candy – spicy food being a big no-no for sufferers of the disease). Some doctors swear stress can be a cause (I’ve always been the type to stress over things that shouldn’t be stressed over – at the time, I was very stressed about work and finances). Other factors like family history, and now – certain medications:
I hit all the criteria.
The issue with not knowing the true cause of the disease, is it is then impossible to find a cure. The treatment for ulcerative colitis works by controlling the symptoms of the disease to the point where it is effectively in remission. Maintenance medications (such as mesalazine) are then given to keep you in remission indefinitely. Some patients will flare up again once or twice a year, where as others will go the rest of their lives without another episode.
When I return to my room, my roommate is gone and the bed is empty. Work must’ve been important.
A nurse comes in and starts me on the steroids immediately. She says I’ll be getting a new roommate later today.
She was right. Later that evening they wheel in a young kid in the fetal position. He’s screaming and moaning in agony – and he would be for days. His mother is with him. She’s wearing scrubs (I would later find our she’s a nurse at a nearby hospital), and isn’t phased by her son’s condition. He’s unable to speak. The only communication is the moaning.
Over the next few days, Dr. Wong has instructed me to chart my bowel movements on a chart he’s provided. The steroids are working wonders: They’ve cut my bowel movements in half from 20 to 10. There’s still good amounts of blood – but this is the first time I’ve experienced any type of relief in months. I’m ecstatic! I’m grateful. And, for the first time in months, I’m hopeful.
By mid-week, I’m walking around the hospital like I own the place. I’m starting to feel significantly better: I’ve ditched the hospital gown and am wearing my neon blue Nike dry-fit tank top like I’m about to get in a chest workout.
That evening, I hear my roommate speak for the first time. He’s called his nurse on the intercom.
“Hello, would I be able to get my pain medication,” he says very politely, with a small lisp and an accent which sounds like a cross between British and Nigerian.
His nurse starts his morphine drip. He must be more accustom to it that I was, because it doesn’t knock him out. We start talking, and I open the curtain between us. The curtain would stay open the rest of my hospital stay.
His name is Darren Abbey. He’s a thin, 19-year-old from right around the corner. He went to High School across the street from my campus at UofT, although he did most of his schooling in the UK. Currently, he was studying to become a paralegal at Seneca College, while working part-time at a McDonalds near exhibition place downtown. He explained to me he was worried about losing his job for being off sick.
Darren was suffering from Sickle Cell Anemia.
He explained the symptoms of constant pain all over his body, from head to toe. He had his rosary clutched in his right hand, and I would notice him grasping it every time he would feel pain coming on.
The one thing about Darren was his positivity. Not once did he ever complain about his hospital stay or his condition.
“It could be worse,” he said. “I could have cancer.”
Darren would get to know all of my family members as they came in to visit me. He would chime in as I made fun of my sisters, or ask my mom about her day at work. We would talk about girls we were dating at night, and relationship problems. I lucked out with him as a roommate. To this day, I still keep in contact with him.
I remember Darren initially refusing a blood transfusion despite doctors desperately advising against it.
“I don’t want someone else’s blood in me,” he tells me in confidence that night. “It doesn’t feel right.”
I tell Darren I can’t tell him what to do – but as someone who wants to see him get better, he should probably do what the doctors advise. Eventually he calls in the nurse to tell her he’s changed his mind.
After about a week, I’m feeling like a million bucks.
Before Dr. Wong discharges me, he writes a large prescription which include mesalazine pills and enemas, various vitamins and supplements, light immunosuppressants – and most importantly a steroid dosing schedule:
You can’t stop prednisone immediately. By taking an artificial form of cortisol, your body stops producing it naturally. The correct way to stimulate the natural production of cortisol again, is by gradually tapering off the drug.
I would be on prednisone for the next two months.
Doctors don’t want you on prednisone for extended periods of time because of its laundry list of adverse effects. Physical changes range from common, and less serious such as moon face – to serious complications like bone degeneration. Joint pain, sensitivity, headaches – those were all things I experienced to a lesser degree. I was lucky in the sense that the physical side effects (which tend to be very common) didn’t hit me at all.
The mental ones did.
Aggression, mood wings, night terrors, anxiety, elevated heart-rate, depression – I experienced every single one of them. It’s a bizarre feeling where I knew what was causing these things to happen, but I simply could not control it.
It’s about three weeks since I’ve been discharged from the hospital. I’m driving back from a movie theatre in Richmond Hill, about 15 minutes from my house (I’ve taken a sick leave from work until Dr. Wong clears me to return). From the second I sat down in the driver’s seat in the theatre’s parking lot, I was starting to feel irritable. About five minutes into my drive home, a blanket of aggression passes over me. I feel my face flush. I’m yanking my stick shift to change gears to the point I’m sure it’s going to break. I’m getting increasingly frustrated with all my surrounding traffic moving so slowly.
At that moment, I realize it’s the medication. But, that moment of clarity doesn’t stop it: It makes it worse. Now I’m angry that the medication is forcing me to feel a certain way.
At a traffic light about 3 minutes from my house, in a residential area – a young girl, about 13- years-old, on roller blade decides to jaywalk the intersection. I’m the only car in sight, and a relative safe distance away. Her actions set me right off. I lower my window as I pass the intersection.
“BITCH, DO YOU WANT TO FUCKING DIE TODAY!?” I scream with force and conviction at the top of my lungs.
There’s a frozen look of shock and horror on the girl’s face as she quickly scurries away from my black mustang.
What did I just do? This isn’t like me at all. I’m the most easy-going person on the planet. I avoid confrontation at just about every cost. Something was seriously off – the medication had taken over.
I open the door to my house, to which I’m greeted by the pleasant sound of my mother’s voice.
“Andre’s home!!” she jokingly declares to our dog, Kiara. “How was the movie, baby?”
I ignore her. I head to my basement and shut the door. I sit on a weight bench for 45 minutes, staring at the floor, waiting for the feeling to pass.
The summer is here – and I’ve been accepted into a Masters program in Journalism and Communications at Western University in London, Ontario.
I’m healthy, I’m happy, and I’m excited. I’ve taken an educational leave of absence from work, and as a result lost my health benefits. I stop taking the mesalazine pills as maintenance medication because I can no longer afford it.
It didn’t matter, though. I hadn’t had any signs of the disease since my time in the hospital – I had beaten ulcerative colitis. Or so I had convinced myself.
Halfway through the fall semester, my grandmother passed away. We were close. I knew she wasn’t well – but I didn’t know it was at this point. I’m back and forth between London and Toronto, and it’s starting to take its toll on my school work.
By the tail-end of the fall semester, our entire program is slammed with final projects, presentations, and assignments. Being out of school for a couple years, I’m overwhelmed with stress and anxiety.
This is when I notice my symptoms starting to come back.
I ignore them until the start of the winter semester. By mid-January, I’m seeing blood five to 10 times per day, the dizzy spells have come back, and there is ongoing, spasm-like pain in my lower abdomen. I’m losing the ability to concentrate in class, and it’s becoming extremely difficult to complete my assigned work.
I check myself in to the emergency room of the University Hospital. The sights and sounds of the hospital are all too familiar. I hate and love this place all at the same time. The ER doctor reminds me of Dr. Leung: tall, muscular, and confident. He speaks with the same cadence.
“Your blood work is showing you’re a bit dehydrated,” he explains. “We’re going to keep you under observation and try and get in touch with your specialist.”
They put me on an IV to replenish and rehydrate. After a few hours, he comes back with a prescription for a 40mg taper of prednisone, and a referral slip for a gastroenterologist in London.
“I spoke with Dr. Wong, and we’ve got the first few weeks of prednisone for you – but you’ll need to follow-up with a specialist as soon as you can for observation,” he cautions.
I’m not able to secure an appointment for a specialist for about a month. I even have to go back to the emergency to fill the gap in-between appointments for more prednisone to continue the taper.
I noticed my miracle drug was no longer working miracles. After the first couple weeks, the steroids have completely lost any effect they had – which, to be honest, wasn’t much to begin with. I’m at about 15 movements a day, I’m losing copious amounts of blood, and the dizzy spells are becoming more prominent.
I’m starting to get spotty with my attendance in class. Some of my professors know I’m under the weather, and a few of my close friends know I’ve been sick. I haven’t really given too many details – it’s a hard condition to talk to people about in detail.
I’ve stopped going to the gym altogether, for fear of passing out during a workout.
That’s the one thing I hate about this disease. Once you’re caught in a flare up, everything else in your life HAS to be put on hold. There’s no way around it. You can try and ignore, or work through the symptoms – but it’s impossible. The longer you put the disease on the back burner, the exponentially worse it gets.
I’m sitting in an examination room waiting for Dr. Michael Sey, the London gastroenterologist I’ve been referred to. His office is bright, clean, and inviting. He has a chart of the colon next to his desk, sponsored by Salofalk (a pharmaceutical company which manufactures mesalazine pills).
Dr. Sey opens the door to his office with a giant smile on his face. He can’t be older than 29- years-old. He’s the polar opposite to Dr. Leung’s confident and professional approach. Dr. Sey is shorter, skinnier, very personable, and always smiling.
“So Andre, I hear you’re originally from Scarborough?” he enthusiastically asks as he grabs a seat next to his computer. “I actually grew up around Birchmount and Sheppard!”
What a small world. He grew up about five minutes from where I did. And now here we both were in an examination room in London. We chat a bit about Toronto before I tell him what’s been going on.
“Andre, it sounds like you’ve become steroid-dependent,” he explains. “I want to do a full colonoscopy to see what’s going on in there. But, it sounds like you would be a good candidate for a medication called Remicade.”
Remicade is classified as an antibody biologic drug, and is used to treat autoimmune diseases. In essence, Remicade is an extremely powerful immunosuppressant that is administered via infusion every eight weeks – used as both a treatment, and maintenance medication. Suppressing the immune system means less white blood cells wrecking havoc on the digestive tract. The only
issue is how long Remicade stays effective: your body can eventually develop antibodies to the treatments, garnering it useless. Some people lose effectiveness within a year (if the drug works at all), others have been on it for over a decade with no complaints.
Getting the ball rolling for Remicade, however, is very tricky – the drug can cost up to 10,000 dollars per treatment.
My colonoscopy was scheduled for the following week. ***
My mom, dad, and sister came up to London to be with me during the procedure. I was in bad shape. The colonoscopy prep had wrecked havoc on my system, and I was feeling extremely weak, tired, and frustrated.
I’m called in to a waiting room at St. Joseph’s Hospital in London, and handed a dark blue gown to change into. As I walk from room to room, I can’t help but notice all the posters urging the importance of getting tested for colon cancer. They remind me of my roommate from the hospital last year.
In the waiting room, there’s a television playing a DVD of old I Dream of Jeannie reruns. There’s four of us in gowns, holding plastic bags with our personal belongings. We’re all waiting for colonoscopies. Not one of us is watching the TV. Everyone is on-edge for what’s about to take place.
I’m not too concerned about the procedure. I know I’m going to be put out – nothing could be worse than the first flex sig I did almost a year ago.
And I was right. Before I know it, I’m in and out – piece of cake. The hardest part was listening to what Dr. Sey had to tell me after the procedure.
“It looks pretty bad in there, Andre,” he says – still with a smile on his face. “The inflammation is pretty severe. We’ll get the paperwork started for Remicade, but it could take a few weeks.”
Dr. Sey recommends I not be on my own for the next few weeks. My parents decide to take me home for at least the weekend to keep an eye on me.
I only make it one day in Toronto before 9-1-1 is called again.
I’ve been rushed again to Centenary hospital. The pain in my stomach is about twice as severe from the last time I was here. I’m given morphine, and IV steroids immediately.
As a precaution, the doctors have performed a series of tests, and given me antibiotics for a c. difficile infection to cover all bases.
The emergency room is so busy, there is simply no space in the observation room for new patients. A bed has been setup for me in the hallway of the main lobby. The constant sound of
the sliding doors, police officers filing their reports, the blinding white fluorescent lights – makes it impossible for me to get any rest.
I’m up all night.
At about 8am the next morning, I’m greeted by the familiar face of Dr. Leung. It had been about a year since I saw him last.
“Hi Andre, I think we met last year right?” he asks, a little unsure. Even so, his confidence shines through. “We’re still waiting on a bed for you upstairs. In the meantime, I’m going to send an email to Dr. Sey to get your colonoscopy results.”
Turns out Dr. Leung was a couple years ahead of Dr. Sey at the University of Toronto during med school, and they happened to know each other, which made the whole process much smoother.
Later that evening, I’m rushed without warning or explanation into a concrete room without windows. There’s a door on one side, and another door (which I would eventually find out) leads to a nursing station on the other. The walls are bare. Other than a table against the same wall as my stretcher, there is nothing else in the room. There’s no indicator of time – no clock, and my phone is dead. I must’ve been in this room – isolated – for at least eight hours before a woman, covered head to toe in what looked like a biohazard suit, walks through the internal door.
I stare at her in stark confusion.
“Are you alright?” she asks me.
I wasn’t alright. I was very confused. I wanted to know exactly what was going on.
“You’re under quarantine until we get your test results back,” she explains. “In the case you have a bacterial infection, you could be highly contagious.”
I was quite happy with my concrete room. It was private, spacious – albeit lonely, but anything was better than being in hustle and bustle of the loud, cold emergency room lobby.
Dr. Leung came by to see me later that afternoon.
“I’m going to have a pharmaceutical rep come by a bit later to start the paperwork for Remicade,” he explains to me. “This way, if we decide to pull the trigger on it, everything is already in place.”
I’ve been a bit apprehensive to Remicade since Dr. Sey mentioned it as a viable option back in London. The reason is this: treatment for ulcerative colitis works in a progressive fashion – when one medication fails, you move onto the next, more powerful drug. There’s no stepping backwards. As of now, mesalazine had failed, immuran (a lesser immunosuppressant I was
prescribed during one of my follow-ups) had failed, and now, the prednisone was failing. Remicade was the next one up.
It was also the last one up.
The only option after Remicade (as of right now) is surgical removal of the colon. It is also the only “cure” for ulcerative colitis. The thought of having to live with a colectomy bag attached to me for the rest of my life scares me more than anything. That’s not the quality of life I want. The fact that it was so close to becoming reality terrifies me.
That reality sank in a few days later.
Dr. Leung came upstairs to my new room on the eighth floor for his morning rounds. It looked almost identical to the room I had last year. Again, I had the bed closest to the washroom.
“I think we should start you on Remicade today, Andre,” Dr. Leung tells me. “You aren’t responding well to the steroids this time.”
I respond in a defeated, quiet tone. I’m pleading with him to give the steroids a couple more days. I don’t want to start Remicade, because I don’t want it to fail. I tell him I don’t want to be that much closer to surgery.
“You do realize that’s the path you’re headed down?” he states as fact – almost like the question was posed as a courtesy. It sends chills down my spine. “Your disease has progressed to very severe. My job is to keep your colon as healthy as possible, for as long as possible until we get to that point.”
He doesn’t say it explicitly – but the implication is clear as day: I was going to eventually lose my colon to this disease.
Dr. Leung reluctantly agrees to give me a few more days before we start the Remicade infusions.
I have a couple days for the steroids to miraculously start working like they did almost a year ago. It was an impossibility and I knew it. The IV dosage of 60mg was the highest I’d ever been on.
I also knew I needed relief, and I needed it now. My body had been put through the ringer, and I was getting very close to the end of the winter semester at Western. I desperately needed to get well and back to London. I was terrified of being kicked out of school – all my hard work toward my master’s degree down the drain.
As all these thoughts are racing through my mind, Dr. Leung has walked over to the 21-year-old kid next to me. His name is Danny, and he’d been in rough shape since he was brought in on a wheel chair a couple nights ago. I didn’t talk too much to him, but I had gathered his excessive drinking has led to cirrhosis of his liver.
“You have a 30 per cent chance of dying in the next month if you don’t respond to treatment,” he tells him.
The thoughts of school, surgery, medications – all of it stops. Things could be much worse. I leave the room out of respect.
I responded amazingly well to my first Remicade infusion. I was discharged the same day it was administered – and exactly a week later, I felt like a new man.
I was able to return to London, and successfully finish my semester. And, as of the writing of this piece, I’ve finished my third loading dose. I couldn’t ask for things to be better.
My cousin Dean kept in contact with me the entire time – giving me support where I needed. He had been through this all before, and was the only one who understood completely what I was going through.
He expressed his frustration with medications failing, and was determined to go a different route. And he did.
I received this via text shortly after being discharged from the hospital:
My Dearest Colon,
I’ve decided that our relationship come to an end. We had many good years together. We’ve had some fantastic times. Remember the time you functioned properly? That was great. However, over the past five years you have changed: we just don’t get on like we used to. I’ve done everything I can to make us work, and there have been so many occasions that I thought we could make this work, but time and time again you have let me down.
Enough is enough.
I won’t forget you. I’ll always have our memories and I know that life without you won’t be the same. But, I have to move on with my life – and the only way I can do that is without you. Please don’t try and convince me otherwise, I’ve made up my mind.
Before you ask, no we can’t be friends. -Dean.