What are they?
Crohn’s disease is a type of inflammatory bowel disease (IBD). It causes inflammation in the digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. Crohn’s typically affects the small intestine.
Ulcerative colitis is also an IBD but typically affects the large intestine in the lower abdomen. Unlike Crohn’s, viral, bacterial and parasitic colitis can be cured with appropriate medicines while pseudomembranous colitis can usually be cured with appropriate antibiotics. However, ulcerative colitis has no known cure, though there are several new treatments that can greatly reduce signs and symptoms of the disease and bring about long-term remission.
What is the Mission and Goals of Crohn’s and Colitis Canada?
Mission
They aspire to cure Crohn’s disease and ulcerative colitis and to improve the quality of life of everyone affected by these diseases.
Goals
- Accelerate research
- Support people affected by IBD with programs such as:
- The MyGut App which enables people to track, understand, and manage the journey with Crohn’s disease or ulcerative colitis.
- Crohn’s and Colitis Connect which connects IBD patients to experienced individuals (mentors), let’s them hear from others about managing symptoms, helps navigate treatment and caring for caregivers and allows sufferers to attend virtual peer connect events to find information from evidence-based resources.
- Drive system change regarding support for people affected by IBD
- Increase awareness of IBD in all forms
Andy Mac’s Story
I have had Crohn’s disease since I was nine years old and my IBD stats are 33 colonoscopies, 12 different medications, 2 surgeries and 6 extended hospital stays.
My Diagnosis
The world of inflammatory bowel disease is leaps and bounds away from when I was officially diagnosed back in 2006.
It was eight months before doctors provided a real diagnosis. Previously, I had had several other doctors tell me I was overly-stressed, had an eating disorder, or my favourite… faking it and looking for attention.
What a lot of people don’t understand when talking to someone with a chronic illness is how much they are forced to grow up and mature quicker than their peers. Before my symptoms first started, my parents were going through a divorce and I had a front row seat to a lot of the ugliness that came with it. That experience, coupled with living with Crohn’s disease, led to me growing up at a very young age.
I also knew what it was doing to my family, seeing me suffer every day, so I did my best to hide a lot of my symptoms or “episodes” so that I could at least pretend and not have to worry about seeing my mom cry because she couldn’t fix me.
It was March 2006 when, I finally started to act like a ‘normal’ young kid again. Crohn’s disease took away my social life as a child, it took away my extra-curriculars like hockey and soccer and it took away the joy I was supposed to be having as someone who still didn’t have all their adult teeth in yet but the magic of western medicine had me kicking ass on the ice, pitch and making friends again… there was finally a light at the end of this, so I thought.
1 Treatment, 2 Treatment, 3 Treatment… OK We’re Running Out of Options
When I finally started my treatment, it was rocky; I was put on steroids and couldn’t handle them orally which led to a whole ordeal where I had to accept them through intravenous. (Fun.)
As great as my first round of treatments seemed to work, they weren’t permanent, which meant trial and error with other possible medications to try and keep me healthy.
I was a VERY GOOD student. even throughout the eight months of hell. I got straight As without even trying. So, when my doctors were telling me I was failing drug after drug, I was incredibly distraught.
Every medication failed to work – it was beyond frustrating and left us at a complete loss for words. At one point, I was taking upwards of nine pills a day. It wasn’t until I was 11 (two years later) where we finally found a treatment that would stick.
Before this, I was known as the funny kid who was smart, could play the odd sport and keep a smile on not only my face, but everyone else’s… life was looking up and I was ready to finally be me again.
You Plan… God Laughs
Entering high school, I was stoked. It meant growing up, new friends, maybe a couple of girlfriends, everything a teenager dreamed of. But very quickly in freshman year my Crohn’s disease decided to give me a metaphorical double middle-finger and say “Ya, so you thought.”
I lost 30lbs in a month; I tried soldiering on and managed to keep up with good grades and played hockey when I could but when my new doctor at McMaster took one look at me he said, “We need to act, and we need to act fast.”
That is when Andy Mac (my nickname in high school) learned how to incorporate his braces and NG Feeding Tube into his school uniform. For three months, I was tube fed because my intestines were so inflamed and sick, they couldn’t digest food without slowly killing me.
This was the lowest I had ever been. And didn’t work. I was forced to go under the knife for the first time. Three feet of my digestive track gone, and I was now off to start a new chapter in my life – I began injection-based treatments to keep my Crohn’s in check and ended up having a pretty awesome remaining three years of high school.
So… Now What’s Up?
So… now I am 26 and still not really in a remission.
As a lot of us with IBD know, we constantly have ups and downs and that’s how I’ve lived my life. Since high school, I’ve had a second resection surgery to remove some more gut and then went on and got my degree as well as a graduate degree.
With all things considered, I am very thankful with where things are at. I have my hiccups for sure, will have to be careful with what I eat every day but with everything this disease has thrown at me, I ended up on the other side. I’m me again… which is weird to say because I feel like this disease has made me a different “me.”
I’m not here without my support group – my friends who I made before, during and after the “tube phase,” my family, or my incredible team at McMaster Hospital.
Now, if you were to now ask me who I am, I would tell you I am a very laidback, goofy individual that knows when to get serious and look at things maturely – I’ve merged my two sides kind of like having the best of both worlds – but I’m not defined by my disease, I’m defined by how I’ve gotten up each time after being knocked down.
