Disease-iversary

As of this month, it has been twenty years with Inflammatory Bowel Disease. 

While I have other illnesses that significantly impact my life, here is some of the story of only the Inflammatory Bowel Disease I have been battling. 

Twenty years. 

Let that sink in for a minute. 

Some of the people that I grew up with, and other people my age, now have children the age that I first became ill. 

I woke up in November of my grade nine year thinking that I had the flu. Nausea, stomach pain, and the runs. Apart from that, I was just like anyone else. I had friends, I had crushes, and I worried about the difficulties of not being one of the popular kids. I took the bus to school, I was taking music lessons, and even participated in city musicals. I was deeply involved in sports (namely volleyball, basketball, badminton, and track), went to church on Sundays, and was an honours student. 

After two weeks, the flu hadn't subsided. Not only that, but there was blood. Quite a bit of blood. 

I went to see our family doctor who immediately felt inflammation in my intestines. He sent me for a scope and to a pediatric gastrointestinal specialist. 

I was 14, it was the year 2000, and I had never heard of organs being 'inflamed' before. I had never heard of Inflammatory Bowel Disease. I had never heard the word 'chronic' to describe an illness before. In my small mind at that time, if people got sick, they either got better within a few weeks or months or they died. I had no glimpse into the world of constantly ill; of incessant pain. I was ignorant to its existence. 

After my first colonoscopy/endoscopy combo, I was sent to a bigger city centre at a children's hospital to see another specialist. The official diagnosis from his office came in January of 2001. 

That year I missed over 200 classes. 

I learned what it felt like to be in the 5% of patients who get pancreatitis from certain medications, and was hospitalized for that adverse effect four times that first year. I also developed liver problems, went on a corticosteroid, and had to cut nearly everything out of my diet. I learned what it feels like to have no control over one's body - including weight, bathroom breaks, pain, nausea,  mood swings, and energy. Every month we would drive to see my specialist in the big city and I would have a sigmoidoscopy right there in his office, and I had to get bloodwork done as much as twice a week those first few years. 

I went from being a normal 14-year-old girl going through puberty to another beast all on its own. (Puberty and Prednisone do not mix well). My parents became friends more than parents. Our conversations changed - our whole world had changed. 

The doctors spoke about removing my large intestine several times over the course of the first three years. I was reluctant. I was damn stubborn. I wanted to try every possible avenue first. But when severe dietary restrictions didn't work, when I showed allergies to most of the medications, when I dealt with incontinence several times each and every day, when my body could not function without Prednisone, and when the blood just wouldn't stop, surgery was inevitable. 

My large intestine was removed around a week before my 17th birthday. 

It had actually been scheduled on my birthday, but they found out so they moved it up instead.  

I woke up with a long line of a vertical scar (this was before it could be done laparoscopically), and stoma and ileostomy bag on my stomach - I was 3 feet smaller and 6 lbs lighter (and a picture of my intestine and appendix for a souvenir to prove it). 

Unfortunately for me, the ileostomy was fraught with complications. The Colitis around the ileum never settled down. It didn't settle down in the cuff at the other end either. I was also allergic to the adhesive to keep the bag on my skin. So I had the choice of breaking out in painful and large welts or risk leakage. Turns out, I dealt with both. Due to these complications, it meant that I could not swim or bathe with the bag attached, so I could only shower every five days when I would change my ileostomy bag. 

It's safe to say that, with all of these complications, I felt disgusting. All the time. 

Then, about two months before graduating high school, the ileostomy was reversed. I got to be off of Prednisone, I got to enjoy my graduation, and was hoping to be 'cured'... or as cured as one can get with Ulcerative Colitis. 

Only a few months later, I was having similar (but not identical) symptoms. I was diagnosed with Crohn's Disease that summer. I also continued to have chronic inflammation of the leftover cuff and the newly formed j-pouch. A makeshift cure was no longer in the cards. This was for life. 

Then began a domino effect of other organ complications, other diagnoses, and a laundry list of new symptoms to fight with. It is a battle every day. It is the battle that started everything else. Inflammatory Bowel Disease was my body's trigger to then fight so many other organs and tissues. 

One day the picture of health, the following day showing signs of a flu, one month later being spoken to about surgeries, a potential need for a liver transplant, inflammation in my intestines and pancreas, hospitalized for allergic reactions, losing blood... missing school, missing lessons, missing sports events, and living an entirely new life while trying desperately to hang onto the life I had been living, and doing every single possible thing to try and feel better. 

As of today, my missing organs include by large intestine, appendix, gallbladder, uterus, and both ovaries. 

The question is: can I do another twenty years of this? 

Yes. Yes I can. 

Hell, give me forty. Give me fifty. 

I have had my doubts before, of course. Who wouldn't? But I know I am capable of continuing to fight. 

This year I turned 34 years old. I am battered and bruised, scarred, and taking life day by day. I've made it twenty years with this awful disease, and I'm still going. The most important thing is that I have found happiness and fulfillment within my life. Not just in spite of it, but also because of it. 

Let's go another twenty years, shall we? 

Ulcerative Colitis in High School

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.

Grade eight, singing for the grade nine grad of the year ahead of me. Before I developed UC.

Singing for my own grade nine grad, obviously on Prednisone

Grade Ten, on Prednisone

Grade 11, on the volleyball court during a tournament

The last photo of my abdomen before any surgeries, summer before grade 12

Just before grade 12, after having my large intestine removed (next two photos)

Grade 12 sailing trip

Last photo with an ileostomy bag, in March during grade 12

Graduation Photo

In my grad dress

First Date? Second Date? Engaged?

I had a question posed to me today to write a blog post:

When, in the scope of dating someone, should you mention and talk about your chronic illness?

The answer, like most things, varies from person to person. Overall, my opinion is that there should be mention of it relatively early on, especially if the person you are dating is likely to be affected in a prominent way.
Another way to look at it is: if you were healthy and dating someone with the issues you have, would it have an impact on your decision to date him/her?

But it's never that simple is it?

Many people feel like they have to hide their illnesses until a relationship becomes serious, to avoid that knee-jerk reaction of 'oh you're sick? I don't know if I can deal with that' followed by an early ghosting without bothering to ever get to know you. Others tend to reveal all information in the first date.
(From experience, I would say definitely don't do the latter. The first date is way too heavy).

For me specifically, these were the issues I felt would most likely have a greater impact on a significant other:
• I will likely lose my sight
• I will have major issues with mobility even separate from losing eyesight
• I will likely never be able to work
• I will always need medical care and medical coverage
• Traveling is a major limitation
• I cannot have kids naturally

These were all probable issues very early on. I knew most of these would be problematic before I turned 22 years old. These are major complications that would have a monumental impact on the person who chooses to spend his life with me. To me, if there was a chance the relationship was becoming serious AT ALL, I felt like it was my duty to divulge that information.
There are always workarounds and ways to experience everything - but I understood that it might be more complicated than someone is willing to jump into.
Within the first 5 dates (usually 3), it came up. I felt deceitful if I tried hiding it.

With that said, I did not find my one and only until my late 20s, getting married at age 32. It was 100% worth the wait, but I did go through a particularly tumultuous dating life. So perhaps my approach is not someone's idea of a good one.
Who's to say that if I had waited until a guy fell in love with me and then informed him of the seriousness of the situation that my story may have been quite different.
But how do you know when is too soon, too late, when he might skip town or, in the other case, feel betrayed or manipulated?

I always felt morally bound to be clear about the future issues that would likely come up due to several progressive disorders.

My advice is to read the situation. If your issues are simple to workaround, if it would not severely affect the life of your significant other, then you have no obligation to reveal such personal information until it becomes necessary.
However, if your medical issues are such that could greatly affect his/her decision to have a serious relationship, I would suggest mentioning it fairly early on. Not exactly a first date, but maybe within the initial 10 dates.