One morning almost six years ago, I woke up to my big toe turned bright red, and swelled up to the size of a golf ball. This may have made more sense if I had gotten stepped on in my basketball game the day before, or maybe stubbed it on a table by accident. Weirdly enough, neither of these things had happened to me, and my inflated toe somehow appeared out of nowhere. The painful mystery did not go away on its own, and I was forced to go to the walk-in clinic to visit the sports medicine doctor.
At first glance, my large toe resembled an infection called gout, which is the result from a buildup of certain minerals in your body, and usually only happens in old people. Since I was only 15 years old at the time, this seemed pretty strange. The doctor took a blood test, and I was given an anti-inflammatory pill and told to come back in a couple days. My toe went back to normal size shortly after, but the reason for it remains a mystery. Nevertheless, the blood test taken in attempt to reveal the problem, revealed some new mysteries of its own. When the doctor looked at my results, he discovered my blood and iron levels were far below average. He informed me that a side-affect of this was feeling tired all the time. When we discussed basketball, he said “you must not have been playing as well as everyone else, having only around 2/3 of the blood in your body.” I wasn’t sure how to respond, because I was playing fine, probably just putting in a lot more unknown effort in order to keep up with everyone else. A few days later when my family doctor saw the results, she said it was best that I see a specialist, and that she was going to put in a referral.
To get into the only pediatric gastroenterologist in Winnipeg could take months. I got in in under a week, so apparently something was urgent. The doctor believed this too, and thought I needed to be checked out further, in the form of a colonoscopy. Because I was still a legally a child, I was going to be put under for this procedure. Although no actual surgery was being done, my 15-year-old self had never even broken a bone before, and was terrified. When the day of the procedure came, I tried to hold it together, which should have been easy being the generally calm person that I am. As they wheeled me into the room with the bright fluorescent lights beaming down on my face, I couldn’t help but silently shed some tears, breaking from my usual confident self. What I didn’t know, was that this was only the beginning.
Two days later, I was diagnosed with Ulcerative Colitis. Like majority of people, I did not really know what this meant at the time. It is a disease that leaves ulcers, which are basically scabs, on your colon. The outcome of this is different for everyone who has it. It can mean stomach cramps ranging from ‘I can go on with my day’ to ‘I feel like someone is twisting a knife in my stomach and I very possibly may pass out on the bathroom floor due to agonizing pain.’ It means blood loss, resulting in exhaustion and hundreds of supplements and medications. It can cause arthritis and chronic pain (for me, in my legs). It means, on bad days, or even bad weeks (commonly referred to as ‘flare ups’), there must be a bathroom close by, as it is essentially a disease of the bowels and can force someone to have to run to the washroom up to countless times an hour. And by countless, it can mean anywhere from 5 times to 15.
It can mean asking to go to the bathroom in your high school English class, only to come back 30 minutes later after almost clawing your eyes out from excruciating pain in the bathroom stall, having other kids wonder why you could have possibly taken so long. It can mean being worried about the 15-minute drive to school, a short but significant time period without having quick access to a washroom. And the worst, it can mean being forced to tell your teachers and close friends something so personal about yourself and having them look at you with big, sad eyes like you are a sick puppy.
At the start of my diagnosis, I did not yet know it meant any of these things. I was given the standard medication that every child is started out with, and continued to live my life. I had good days where everything felt mostly normal, and I had bad days where the flare-ups had me exhausted, in pain, and constantly running to the washroom, having painful and bloody bowel movements up to 20 times a day. Nonetheless, I continued to live my life the same way I always had, not willing to let any disease hold me back.
It went like this for a couple years, until the summer of grade 11, when things took a drastic turn. Every summer I go away to an overnight summer camp in Ontario, and this summer was no exception. This would be my first summer working there as a counselor. I had recently been put on a new, stronger form of medication, in the form of a needle, which I injected into my own body every couple weeks (at age 16, I was injecting myself with a needle). While I was away that summer, my body began to slowly fall apart. Everything started off fine, and days were great. But soon enough, the needles didn’t seem to be working at all, and I was constantly running to the bathroom, enduring the most extreme and severe pain that I had ever experienced, leaving me bent over on the ground with my arms wrapped around my body, only to have to put on a smile and greet children minutes later.
Luckily, I had an appointment in the middle of the summer to be transitioned to a new adult doctor, who prescribed me to take my medication every week instead of two weeks. I was thankful, and hoped this would fix the problem. Unfortunately as the summer went by, nothing changed. The pain I experienced became worse than ever, an indescribable feeling that had me grasping things around me to hold onto, lying on the ground and screaming in agony.
It had left me a walking zombie, constantly exhausted, yet being too embarrassed to ask for time off, or work less hard than anyone else. I walked around the camp with a smile on my face, while my insides were slowly killing me and my quality of life. I was exhausted and dead on the inside, and had no one who could possibly understand or relate to what I was going through to talk to.
I became so ill that I left my position as a counselor at the camp a week before everyone else did to come home early. I told no one in advance, afraid of what people might think, as no one could possibly understand what was happening to me. Ulcerative Colitis is an ‘invisible illness’, meaning no one can see that I have it because it is only happening inside my body. The only possible signs showing that I was ill, were my thinning hair and a sick pale color constantly on my face. Because of this, barely anyone knew what I was going through. The doctor and I agreed my medication wasn’t doing its job, and I was switched to a more extreme drug, which required me going to an infusion center and get an IV for 3 hours every couple weeks.
At the infusion center, the nice women would poke me with needles while I sat there in a big comfy chair, and prayed that this would finally make me better. When my grade 12 year had begun, there was still no improvement. Everyday I went to school, I could hardly make it through the whole day. It was near impossible to drag myself out of bed in the morning, or have enough energy to make it past lunch. I went from doing competitive sports 5-6 days a week, to being forced to quit any sort of physical and extracurricular activity in my senior year due to complete and utter exhaustion. I had days where I couldn’t leave the couch, had high fevers with flashes of hot and cold, leaving me waking up drenched in sweat in the middle of the night, so badly I had to move sides in my bed because it was soaking wet.
I passed out on the couch everyday after school thinking that maybe if I rested, later I would have enough energy to go to a dance class, when I just got even more tired throughout the night. I could barely eat, and had to force myself to whenever I could, dropping almost 30 pounds in a few months, losing many essential nutrients in my body on a daily basis through this disease eating me alive.
There was one more medication to try that was no longer covered by the government, which my family was forced to pay thousands dollars for me to try. The guilt was overbearing, but I had no other choice. It was the last one, and the only option afterwards was surgery. Sure enough, after having it infused a few times, there was no result, and surgery was the only option left.
I had a consultation with a surgeon, who explained it to me, and thankfully booked me in for January of 2016, almost three years ago. This was not by any means a desirable solution. Doctors had been briefly talking to me about it for years, but in the back of my mind I always believed I would never possibly have to result to something like that.
The surgery was in two parts, and would reconstruct my whole stomach, removing my entire colon and rectum. I would be out of school for a month and a half in total, and on very intense painkillers. I was terrified, but knew it would be worth it in the long run. When the day came, I didn’t even know how to feel. I would be in surgery for 5-6 hours, and stay in the hospital for a week after. When they wheeled me in on the hospital bed this time around, it was impossible to hold back the tears. I would be given an ileostomy, which in simple terms is a bag on the front of your body, placed around a piece of stomach tissue that is moved to the outside of your stomach, which poops into the bag. This would be on my body until the second surgery, and I would have to learn to take care of it, clean it, and change the bag every 4-5 days. After the second surgery, it would be removed, and I would be back to ‘normal.’
In the hospital, learning how to work the new addition to my body was probably the worse part, on top with the horrible pain removing one of my organs had left. Being a teenage girl, having a bag of poop on the outside of my body was a less than ideal scenario, but it was either that or suffer for the rest of my life.
I didn’t understand why I would possibly need a month of recovery time, until it happened. The pain kept me up for many nights, and I did not have a full nights sleep until weeks later. It left me terrified to go to sleep for more than two hours at a time, with fear of waking up in pain from not regularly taking painkillers.
Just my luck, a day after being home I developed an infection, which left me vomiting up every part of my insides, and was back in the hospital for an extra week. Two of the longest weeks of my life later, I was home yet again, struggling through recovery. My friends visited and brought me chocolate and stuffed toys, and my teachers recorded my classes so I wouldn’t fall behind when I had the energy to start working again. I laid in bed all day, my parents forcing me to get up and walk around. I was scrawny and weak, missing out on social events, hanging out with friends, and simple things like being able to walk for more than 10 minutes at a time.
I couldn’t remember the last day I hadn’t been so frustrated that I was brought to tears, wondering why I deserved to be going through this. One of the hardest things I had to endure was having to deeply depend so much on others, especially as a naturally independent person. My parents had to do everything for me, and even though it was painful to watch, there was no option but to let them.
After the month of recovery was up, I felt well enough to start going back to school. I felt immensely better than I ever had, and when I had my second surgery three months later, I had remembered what it was like to finally be able to enjoy life. After so many months of living in pain, I had totally forgotten what it was like to have a decent quality of life. I almost didn’t want it back to it, being used to the routine of being sick for months, extreme change was a scary thought.
The second surgery was much easier, and I was out of the hospital within a couple days, and back at school in a couple weeks. I started working out, and felt stronger and less exhausted than I had in over 2 years. I found a passion for fitness and becoming stronger, never taking for granted what it was like to have a broken body again. Shortly after fully recovering, I began powerlifting, exhilarated by the feeling of becoming stronger each week, and being able to develop visible muscles on my body.
Recovering from surgery and ulcerative colitis is no doubt the hardest thing I have ever done, and possibly the hardest thing I will ever do. I am still recovering to this day. I am not ‘cured’ from the disease, as my bowels still function differently and I am sometimes tired, but I am mounds better than I could have imagined a year ago. My stomach is sensitive to all foods; sugar, dairy, fruit, vegetables, oils, processed food, and nuts, to name a few. I often have pains in my legs and butt due to arthritis and harsh inflammation that continues to live on inside me.
I have experienced things hardly anyone only 20 ever will or should; yet I still consider myself lucky. Lucky, because my disease had a ‘cure,’ I was still able to get into my dream university, and that I have a wonderful family who was with me the whole way.
I have come to realize people my age do not yet know what empathy is, and probably will not for many years to come. Countless people who experience mental and physical illness look totally fine from the outside. No one could see my illness, or the countless hours I spent in pain, how I was forced to quit every sport in my senior year, or everything else I went through and was feeling on a daily basis. To this day, many people I saw daily in high school still don’t really know what I went through, because they could not see it with their own eyes. Everyday people are suffering, and even though it may not be visible to the human eye, it is still happening.
Along this journey I have learned many things, and perseverance and empathy will always be ones that I value most. These experiences are something I will never forget, and if I had to choice to go back and endure none of it at all, I would deny it, as these things have shaped me into who I am today.
Hannah Bugas, Fitness Enthusiast.
Any individuals in sports and fitness who would like to share their voice, please submit to hank@hankfittraining.com