I was diagnosed with ulcerative colitis when I was 15.
“What it means is you can get ulcers in parts of your large intestine. Those ulcers mean I end up having to go the washroom a lot and can lose a lot of blood. I don’t have flare ups now that I’m on medication, but I remember, as a teenager, I’d be really weak, and in pain, and I’d feel nauseous. I just wanted to stay at home.”
“I’ve tried various different medications over the years, some very difficult ones, like steroids, with a lot of side effects. Now I’m on one medication that I get intravenously from a clinic every two months, which seems to be working very well for me. The medicine works by blocking the chemical that is part of the body’s immune response. There’s no noticeable side effects.”
The medication I’m on costs $1400 every two months.
“I’m a graduate student, so that’s more money than I make in one month.”
“Fortunately, the drug is covered through Ontario’s Trillium Drug Program. It’s amazing because it allows me to take this drug that really helps me. My doctor has to apply on my behalf, and has to make the case that I require this medication, and that it’s effective. The only issue is that there is another medication that is very similar to the one that I’m on, but it’s easier to administer. I wouldn’t have to go to the clinic, because I can self-inject it. That would mean I could travel or work somewhere else and I wouldn’t feel tethered to Ontario. But my doctor said it’s difficult for him to make the case of why I need to switch, when this medication I’m currently on is working for me. It would be nice if there was less bureaucracy, and more flexibility, built in the program.”
I once tried eating nothing but yoghurt and rice for a month because my parents are into homeopathic medicine and had read this somewhere. I did it just to show them it wouldn’t work.
“At the clinic where I get the intravenous drug, there are usually three to six other people there receiving medications. It takes three hours and you sit in these reclining chairs. I don’t want to make it sound lavish, but there are these big TVs and they have a Netflix account. So we choose a movie together. Everyone is always polite about it and will say, ‘It doesn’t matter to me.’ I’ve mostly seen some pretty bad films.”