The Lighter Side of Medicine: ostomy

This story is a favourite of mine - even though it is also one of my most significant pivots, and heartbreaks, in life due to illness.

Volleyball.

Volleyball for me was always on par with, and often above, my love for music. The moment I touched that damn ball I was hooked. I played all through junior high on both school and city club teams as well as attending camps through the summers. I was pretty damn good and had a wicked vertical: I played middle.

In grade eight I was pulled out of practice one day by a University talent scout. I was asked if I had given any thought to where I may want to attend University (I hadn't... I was 13 years old and literally just trying to survive each school day). That scout was a representative for both U of M and UBC, so I was encouraged to give it some real thought.

The next year is when I first got sick, though I still played school and city club ball. For grade 10 I was in hospital during tryouts, so I didn't play school ball. Then grade 11 came, and even though I was incredibly nervous, I attended tryouts. This was not easy. Firstly, I hadn't played school ball in a year and was terrified I'd be too rusty and would make a complete ass of myself. Secondly, it was made inescapably clear by the other girls that I was not welcome. It didn't matter that I had played every sport - in and out of school - with these girls the previous four years. When I showed up they huddled together, turned their backs, and pretended that I did not exist. Like children - pretending I was invisible.

But I did exist.

And I made the senior team, playing middle - at 5'7" I was the shortest middle in the league.

Well, that year was incredible - even though I ended up hospitalized after every single tournament. My name was in the local newspaper regularly, I got to visit the UBC campus, compete in international tournaments, and by mid-late season I was a starting middle. I was, again, approached by scouts. I was told that I would be getting multiple offers in my senior year and that I would essentially have my choice of schools for full-ride volleyball scholarships. (I had my heart set on UBC by this point).

By the end of the season I was at an all-time high. Even Coach told me to keep my jersey over the summer for the following year instead of returning it like everyone else.

Then August came and my body had other plans. I had emergency open abdominal surgery to remove my large intestine. This meant a lot of different struggles, but a big one was that I couldn't play volleyball. My senior year, with prospective scholarship offers, and my ticket to get outta dodge and play the game I loved so much, was gone. On the first day of school I reluctantly handed in my jersey (number 9),with some tears.

So I pivoted and focused, as best I could, on academia and music.

That year was tough. I had a temporary ostomy, I got mono that year, had my second abdominal surgery a month before graduation, and had developed problems with my pancreas, liver, and thyroid, along with some particularly nasty side effects from Prednisone. After the second surgery I was technically 'cured' of Ulcerative Colitis, but it only took a few months to then be diagnosed with Crohn's Disease. Not like high school isn't already tough enough, right?

It was obvious by then that I would have to stay closer to home after graduating - which in and of itself a question mark because of my health.

I did receive several academic scholarships to the local University, so that's where I went. Unfortunately, that school did not have a volleyball team. So I focused on a combined degree with double majors: Music and Psychology.

I could have gone to the local college instead and tried out for their team, but I was realizing that the high level of competition might not be physically attainable, and I had my sights set on a more reputable education if I couldn't play ball. So I joined some recreational leagues instead, just to keep me on the court. A few years, and a few additional medical conditions, later it was clear that I likely wouldn't have been able to play for long even if I happened to make a college team. My body was simply too unreliable.

I loved University, I loved academia, and I am proud of everything I have been able to attain. I know it's not always good to dwell on past accomplishments - I mean, it was just high school, right? But it is nice sometimes to look back and remember that I must have had something special - I must have had some talent, and no one can take that away from me. At one point in my life I was good enough at something to warrant being scouted by University scouts - starting at age 13! That's pretty damn cool.

It's a major reason why being able to get back into volleyball recently feels like such a huge deal after years of using canes, walkers, and wheelchairs - which I still require sometimes. Volleyball was my second true love - second to music. (My husband, Ryan, takes the cake though - don't worry, after meeting you, you'll always be my top true love) ;).

Life and illness have pushed me in various directions, changed my course, forced me to ride the wave instead of fight against it and I don't regret it, but I do miss it. I also wonder how different my life may have been had it not changed course when it did, or at all. I'm lucky enough to be truly happy, so my wondering never feels like regret or depressed longing, just curiosity and imagination. And I will always have those years that I played, when it felt like I had an entire world of opportunity ahead.

If you've never truly loved a sport, hobby, or activity, this entire post will likely seem borderline idiotic... but if you have, then you know what it might feel like to have it, then lose it, then have it, then lose it again, then be able to come back to it years down the road.

My Ulcerative Colitis showed up when I was 14: in grade 9.

I thought I had the flu.

Nausea, vomiting, the runs, body aches, stomach cramping, and blood. After these symptoms lasted around two weeks, I finally mentioned to my mom that this flu was taking forever to go away and was causing the runs 8-10 times per day.

It was November.

We booked me in to see our family physician, who palpated my stomach only twice before saying the word: "inflamed".

At the time, I had no clue what it meant. I had never heard the word.

Then came my first pediatric GI specialist in my hometown and a suspicion of Ulcerative Colitis (another term our entire family was unfamiliar with), followed by my first Colonoscopy/Endoscopy combination with either light or no sedation - I remember every grueling moment.

I was sent promptly to Calgary to the Alberta Children's Hospital with a GI specialist who took me on as a patient and continuously called my case an "enigma". It was the perfect word and still applies today. I was diagnosed officially in January of 2001.

Within two months, I went from tip-top shape health-wise, in every possible co-curricular activity, to being told:

1. I have a chronic illness (another unfamiliar term).

2. I will be in pain for the rest of my life.

3. Those flu-like symptoms may never go away.

4. We have no clue why you have this.

5. There is no cure.

6. Things will get worse, then better, in a continuous cycle.

7. My body's immune system is turning on itself.

My internal system was now, forever, in a constant battle, leaving damaged, bloodied, and painful organs. The inflammation and autoimmunity of my body has ravaged my intestines, ovaries, gallbladder, eyes, thyroid, muscles, skin, liver, kidneys, esophagus, blood vessels, stomach, teeth, mouth, pancreas, brain, joints, etc... some temporarily, some with new individual and chronic diagnoses of their own.

Junior high and high school are rarely easy for anyone. To be very clear here, I hated junior high and high school. I loved school itself, I loved extra-curricular activities, and was in good standing with my teachers and an honour student, but, socially, I was an unpopular jock. I was the jock who was also a band and theater geek. I was a prep who missed a ton of classes (being in and out of hospital, silently swept under the rug). I was a young and naive student with young social skills and a goody-two-shoes. I likely said and did things that made my social standing worse. At the time, the social climate of our school was horrendous, complicated, and drove me nearly to suicide (which I do not often talk about).

Bullying was rampant and yet maliciously calculated & nearly invisible to staff, and also stemmed from good students. Good students who were well-behaved in classrooms, talented in athletics, music, theater, and other co-curriculars, and fluent in passive aggressive behaviour.

With all of that said, and with all of the sh*tty things that people said or did to one another, I do have to say one thing: my illness was rarely used as a weapon.

There were the rumours that I was 'faking it', students and their parents saying that having my large intestine surgically removed was 'not a big deal', and the ever-so-present comments like: 'if she's so sick, why can she do ______' or, of course, 'she doesn't look sick', but that happens with every illness throughout adulthood as well.

What I have to give my classmates credit for is somehow understanding that certain symptoms or topics would be going too far.

I had accidents. The particular nature of my UC meant that I had accidents nearly every single day from age 14-17, and then approximately once a week until age 24, then about once a month thereafter. I was too scared to walk around the lake because the distance from the parking lot to the washroom was too far (maybe 100 ft - and I ran track)! The bridge from the west side of town to my high school was terrifying. 3 minutes with no businesses in sight - no potential washroom. So we would stop at a washroom right before the bridge and right after the bridge - every single day - and hope my intestines would behave themselves on the long road across. It was all luck. A wild guess.

I remember one particular day, stopping midway on that bridge, hazards on, and having to go to the washroom in a bucket we kept in the car with the morning rush of traffic whizzing by. That day, I turned around and went home instead of going to school. I just couldn't do it. Luckily, with my dad working IT for the school and being one of the football coaches, I often called in sick myself and he could easily verify.

Public transit was worse - but a necessary evil at times. Have you ever seen in movies where people scream for the bus to stop as they race off? Yeah. I did that. Several times. Again, sometimes I made it, sometimes I didn't. There used to be a pita place that would have the bathroom key ready for me when I ran in after having a few close-calls downtown. Those people were saviors to me at that time.

Volleyball tournaments were the most stressful and took the most toll on my body. I love volleyball. I mean, along with music, it was my entire passion in life. Socially, it was hell, but when I was on that court and playing that game I felt unstoppable. Road trips with girls who were often horrible to one another though? Yikes. Bringing a bucket onto the team van in case I had an accident? Petrifying.

BUT - I do not remember anyone specifically poking fun at my incontinence. There may have been sniggers or whispers, but I actually quite doubt it. As awful as they could be, they could also be decent about more serious issues. Thank goodness for small favours.

I wound up requiring emergency care and often a few days of hospitalization after every single tournament, which was nearly every weekend. No one would ever be able to drag me off of that court, though. No one, not even the coaches, could convince me to take a break or take it easy. I was all in, all the time, racing to the washroom after every set, vomiting continuously throughout the day, and hospitalized afterwards. Sometimes I could not handle the anxiety of rooming with teammates (or sharing a washroom), so my parents would often accompany us and we would stay in our own hotel room. This obviously wouldn't help me socially, but I think those girls actually witnessing accidents in the room would have been a lot worse, and this illness brought our family incredibly close together.

A month before grade 12 started (one week before a planned family vacation for my birthday, and 3 weeks until volleyball try-outs), my large intestine called it quits. I was raced to the Children's Hospital and surgery was planned and executed within days. During those excruciating days, I planned my last year's curriculum. I had spares from doing summer school, so I used one spare in the first semester and two in the third semester (for my projected second surgery). Yes, I planned my high school year around surgeries. We also made sure not to do the second surgery until after the spring musical season so that I could play a part in Les Misérables.

The senior year I had been looking forward to disappeared within days:

No volleyball. No volleyball scholarships. No city volleyball. No chance for UBC or University of Manitoba (which I had been scouted for in previous years). No contact sports of any kind. No softball. No recreational basketball, dodgeball, floor hockey, or swimming.

That's when I focused even more on choir, music, plays, and musicals... with more passive aggressive b.s.. Except this time, my illness; my ileostomy, was not taboo. Changing in front of that cast was pretty damn scary. Many were kind and curious, while others were downright cruel. I tried not to let it get to me, but I eventually was forced to switch changing rooms, after some girls had strewn my stuff all over a classroom, including my ostomy supplies, because they wanted to use the desk I had put my backpack on.

Some days were hell. Performing was worth it. On that stage, just like on the court, I could escape into a world where my body could function normally, where I wasn't 'the sick kid'. Backstage was a nightmare, but I luckily had some pretty phenomenal friends who helped me through everything (who I am proud to say are still friends to this day).

Less than two weeks after the musical's finale, I was back off to Calgary for my second surgery: the ileoanal anastomosis and J-pouch. No more ostomy!!! Off of Prednisone!!! No more Ulcerative Colitis.

Of course, I did develop Chronic Pouchitis and, only months later, Crohn's Disease, but that's not the point.

I attended my senior graduation looking (and feeling) like a different person. I lost the Prednisone chipmunk cheeks and water-weight puffiness I had carried throughout high school, dropping me from a size 12 to a size 0 in less than 30 days. I pivoted and planned my University degree locally, joined several recreational volleyball and softball leagues, and said goodbye to high school. Graduating was a long-shot due to the volatile nature of this illness, so when I graduated with honours and received academic and artistic scholarships, it was a BIG deal. I almost didn't attend the ceremony, because I had little interest in being around some of the students, but the fact that I had made it encouraged me to take pride in the accomplishment.

I wore Depends underneath my grad dress.

People did not recognize who I was.

I sang the national anthem for the ceremony, I made it through the dinner, and I even partied with my classmates down in the park (supervised, of course). I think the partying part helped that some people did not recognize me. Suddenly I was just another person who was there to have fun and celebrate.

Silently, I was celebrating not having to deal with some of them ever again - cheers-ing them knowing I would not have to see them on a daily basis anymore. What a triumphant feeling that was.

The second I was finished my combined degree at the local University, I was out of there!

This is a snapshot of what it was like for me, personally. It doesn't reflect all of the amazing experiences I had outside of school and in school activities. It does not reflect the friendships held and built during that time, nor the tumultuous relationships. The truth is, I rarely looked sick, and I definitely didn't seem sick to most of my peers or their families. My parents didn't talk about it with people other than the necessary friends, teachers, and coaches. I still did everything when it came to activities (until surgery prevented some of it). I attended (and sang for) football games, I still played badminton, I threw javelin since I couldn't participate in the other track sports. I went on sailing trips and took up kayaking.

We pivot. We pivot constantly.

Thanks to my family and friends, who all seamlessly pivoted with me, I had more support than most.

Having chronic illness in my teens, as hard as it was, actually probably saved me. Suddenly the junior high/high school bubble burst and my vast array of 'problems' went far beyond my peers. Those issues abruptly shrunk. Sure, school could be hell, but I was kiiiiinda busy just trying to survive my own body. I was forced to face realities like not being able to have children, rather than focusing on whether or not I had brand name clothing or purses. I had to face the possibility of dying young from an embarrassing disease, so things like having the perfect hair or watching someone freak out over having one tiny pimple (as I vomited bile in the bathroom stall with pancreatitis) was almost comical. My teens were filled with medication-induced menopause (temporarily), severe weight fluctuations, stretch marks, pain, incontinence, major surgeries (even before they could be done laparoscopically), purchasing adult diapers from checkout clerks that were in my classes, and constant hospitalizations. My doctor was right: I have had many of those flu-like symptoms every single day for nearly 20 years (coming this November).

Approximately six months before I developed Inflammatory Bowel Disease is when I considered suicide, due to junior high social problems. I sought out a psychologist who helped me through that time. Then I got sick, and all those people of whom I was terrified seemed a lot smaller to me in comparison to the beast of illness.

The day of my first suspected pancreatitis attack, before the diagnosis of Ulcerative Colitis, in grade seven.