My Awestomy Life
DIAGNOSED WITH CROHN’S DISEASE IN 2000.
Since I was diagnosed with Crohn’s disease at the age of 8 my parents have always reminded me that no matter what, I shouldn’t let the fact that I have Crohn’s stop me from doing anything I want. Before I tell you about the impact these words had on my life, let me tell you a little bit about my story.
I was diagnosed with Crohn’s at the age of 8. I tried pretty much every medication on the market and was in and out of the hospital a lot. When I was 16, I had exhausted all medical options for treatment and had a diversion surgery for a temporary ileostomy. At 21, the amount of inflammation and ulceration in my large intestine hadn’t reduced so we decided to remove my whole colon and make my ostomy a permanent member of the family. Obviously at 16, the idea of carrying around a bag of poop on your stomach is less than ideal. It was definitely a life changing surgery that took a little while to get used to and learn how to manage, but very quickly I saw the positive aspects of this surgery. I call my ostomy Nabeela, the name evolved from me originally calling it Nubs. If you’ve ever seen the episode of Friends with Chandler’s nubbin, that’s where I got it from.
BEING A COMPETITIVE ATHLETE
I started figure skating at the age of 4. Mostly because like all little sisters, I wanted to do whatever my older sister did. I fell in love with the sport right away and began synchronized skating at the age of 6. I spent a lot of time at the arena growing up. Like all my time. As I got older we became more competitive and trained more and longer and attended more competitions. When I was diagnosed with Crohn’s it was really evident that stress was a huge trigger of my symptoms. Competitions were stressful and I would find myself in the dressing room lacing up my skates having to go to the bathroom – super inconvenient. I’ve had to learn how to manage my stress levels and come up with strategies to relax before getting on the ice. When I was really sick I would have no energy and I would be extremely tired all the time, but when I got onto the ice with my team I felt better; it was like an escape, something to distract me from what was going on in my stomach and focus elsewhere.
My family has always travelled a lot, even from when I was little. IBD has no mercy. You gotta go when you gotta go – on a plane, train or cruise, while snorkeling or surfing, while taking a tour through ancient ruins. My strategy when I was younger was to look up where we were going a head of time and locate all the washrooms at that location so I would know where they were when we got there. If that wasn’t possible, as soon as we got to wherever we were going, the first thing I would do in my head was find a washroom – a habit I still sometimes have today. Being (over)prepared like that settled my anxiety and stress. I can still tell you where all the washrooms are at Canada’s Wonderland and which one’s are the most/least busy. When I was 15 I went to Italy for summer school with a couple of my friends. That was my first time travelling that far away without my parents. They were not so keen on letting me go at first, however, armed with their words, “Don’t let Crohn’s stop you from doing what you want”, I convinced them pretty easily. Coordinating my dose of Remicade to be right before I left, and getting a prescription for antibiotics and steroids just in case something went wrong was reassuring.
A lot of people ask me how I travel with an ostomy. Some people are surprised that I do still travel. It really just requires a lot of preparation and planning. In my undergrad I travelled through Italy and France with 3 friends and more recently to Spain with my sister. We travelled through the countries by train, plane, ride share, and boat – which was a bit stressful, not going to lie. When you’re only staying in a city for 3-4 days, lost luggage can be really hard to track down. To prepare for a trip I take about 1.5x the amount of supplies I would normally use for that period of time just in case. Anyone who travels with me knows that they’re getting my ostomy supplies in their bags too. I split up my supplies between my bag, whoever is travelling with me, and my carry on bag. That way if a bag was to get lost I still have supplies.
FROM UNIVERSITY TO GRAD SCHOOL
I’ve always been a good student. I loved going to school and was (still am) a huge nerd. Being in and out of the hospital as a kid made staying on top of school difficult but I always had very understanding teachers who prepared my homework for my parents to pick up weekly for me to complete in the hospital.
After having surgery, I quickly started to feel better, weaned off all meds and felt like a “normal” teenager. My fears, and I think my parent’s stress, of me potentially moving away for University settled as I became healthier and started feeling more like myself. I moved to Ottawa and completed my Honours Bachelor of Health Sciences at the University of Ottawa. I was very involved with extra-curricular clubs, sports and organizations throughout my time in Ottawa and I truly feel like I got to have the full University experience with minimal Crohn’s-related health issues.
I am currently completing my Masters of Physical Therapy at the University of Toronto and absolutely loving it. It is definitely different than undergrad – more classes, more stress, more content. I started the program in September and had my first flare up in 8 years in October. That really took me by surprise. I was so used to feeling healthy that I forgot what it was like to have no energy, the sharp, stabbing stomach pains, the consistent nausea, the debilitating headaches. This was not the time for me to get sick. I went for blood work, an ileoscopy, an MRI, and had biopsies done. My Crohn’s had come back. After 8 years of being in remission it was back and I was terrified. How was I supposed to be going on placement in a hospital treating patients when I didn’t have the energy to get out of bed and get dressed? Luckily my team of doctors were able to quickly get things under control with a low-dose steroid that I am currently weaning off of. I’m feeling a lot better now, but I am going to have to continue to monitor my symptoms and may have to be put on a long-term immunosuppressant. I am determined to finish this program and not let my Crohn’s stand in my way of this.
Dating was something that was really not on my radar until university as all my attention and focus was on my health, or skating, or school. I was really nervous going on dates about if/when/how to bring up that I had Crohn’s, let alone an ostomy! It’s really hard to judge how someone is going to react to that so I feel like I was closed off and not even trying it. I’ve been really lucky to find supportive and understanding partners. My current boyfriend was there throughout the flare up I just went through. He’s been there for me throughout the whole experience, coming to doctor’s appointments, ER visits, reminding me to take my meds, cooking, cleaning and everything in between when I was too tired and sick. I think one of the big reasons our relationship works is that I’m very open about how I am feeling, what I can and can’t do and what help I need.