Four years ago, I received a diagnosis that has changed my life. It’s taught me a lot about strength, survival and resilience when met with disappointment after disappointment. It’s taught me hope, love, friendship, and patience.
In July 2012 at the age of 8, I was diagnosed at The Hospital for Sick Children (Sick Kids) with severe Crohn’s disease. Actually, I should correct that. Initially I was diagnosed with severe ulcerative colitis. You see, ulcerative colitis (UC) and Crohn’s disease are both forms of Inflammatory Bowel Disease (IBD), but can sometimes be very difficult to tell apart. In my case, the inflammation that the doctors noticed during my colonoscopy was limited to my colon and since I didn’t have any non-intestinal symptoms of Crohn’s, or granulomas present, they believed that I had ulcerative colitis.
Over the next several years, I would have many ER visits, hospitalizations and medical appointments. I’ve been wheeled into the operating room 13 times. One of those visits I had a colectomy (removal of the colon), and gained a fancy ostomy bag out of the deal for collecting poop. I donated my colon to science to help find a cure for this disease so hopefully others wouldn’t have to go through these struggles.
I’ve had so many medical treatments and procedures, it’s overwhelming.
At one point I was taking handfuls of 18-19 pills at a time. Each medication brought new side effects, some of them tolerable, some of them a nightmare, but treatment after treatment failed to control my Crohn’s and I kept getting sicker and sicker. It’s still often trial and error to find the right combo that works well for the patient.
After my colectomy, things were looking so bad inside that at one point the doctors were thinking I might have to have a major part of my small intestine removed. The Remicade dramatically failed, leaving me with bleeding psoriasis all over my entire body, I did worry that we’d never find a treatment that worked.
The Stelara injections that the doctor started me on were, and still are, quite new to treating IBD, and not always effective. But taking a chance to see if it helped without major side effects was worth the risk compared to doing nothing. A year later and I’m no longer at risk (at the moment) for losing part of my small intestine! In fact, things look almost normal inside!
After four long years, my Crohn’s is finally starting to get under control. Remission is an awesome thing to achieve, but it can so easily take a turn the opposite direction. I’m focusing on the fact that at least my Crohn’s is now controlled so that we can look at what else is going on with my health because there’s a lot more going on, but that’s a whole other post.
The main thing I want to share with other ostomates is HOPE.
I worried about my future and what it would be like. Would I still be able to achieve my dreams of being a scientist? Could I still attend school? Would I always be spending the majority of my time with doctors and nurses?
There is HOPE.
Keep trying. Failure is not failure so long as you get up and try a different approach. Keep moving forward. Change is scary, but if you don’t make changes, things will likely stay similar to the situation you’re in now. Keep your head up, it does take time to find the right combo of treatments but when you do, it’s a major accomplishment. You CAN do this.
If there’s one thing I learned through my journey, it’s that being optimistic helps.
It can take away the anxiety that you feel when getting treatments, the worries about whether it’s going to work, distract from the pokes and the pain. Having a positive outlook also helps greatly in the healing process. When I’m feeling down and hopeless, the pain and other symptoms can make you feel even worse. Feeling encouraged, supported and hopeful are extremely important since the disease can have an effect on us emotionally as well as physically.
A few years ago I asked my mom if I could transform the treatment rooms at Sick Kids into a child-friendly place of healing and hope. I envisioned a colorful bubble-tube machine as a source of distraction and fun in the room. I wanted each room to get a fresh coat of paint in a relaxing color (I find the yellowness of the room hard to look at), and cloud panels to cover the florescent ceiling lights.
Your $1 donation could help me make this wish come true. It could bring a smile to a sick child’s face, give hope for a brighter future, and inspire others to make a difference in this world and make these rooms amazing child-friendly places of healing. Your donation could take the stress off of parents who are also worried about their child and struggling to distract them during the long treatment day. Together we can make a difference.