Four years ago, I received a diagnosis that has changed my life. In 2012 at age eight, I was diagnosed with severe Crohn's disease. Actually, I was initially diagnosed with ulcerative colitis. They're both inflammatory bowel diseases that can be difficult for doctors to tell apart. In my case, the inflammation was found only in my colon, so since I didn't have any other symptoms of Crohn's or granulomas present, my doctors believed it was ulcerative colitis the whole time.
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 where surgeons removed my entire colon and out of that ordeal, I gained a fancy ostomy bag 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 the same struggles as me. After my colectomy, things were still looking bad inside, so the doctors were thinking that I might have to have a major part of my small intestine removed too.
I've had so many medical treatments and procedures, it's overwhelming. At one point I was taking about 18 different pills, and each medication brought new side effects (some of them tolerable, some of them a nightmare) but treatment after treatment failed to control the symptoms so I kept getting sicker and sicker. 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. It's basically trial and error to find the right combo that works well for each patient. The Stelara injections they 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 more surgery or 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.
Despite disappointment after disappointment, going through all of this has taught me a lot about strength, survival, and resilience. It's also taught me about hope and patience, but the main thing I want to pass along to others 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? Am I going to spend my childhood with doctors and nurses?
You got to keep trying. There is no failure as long as you don't give up. Keep moving forward. You CAN do this. Change is scary, but if you don't do something things will stay the same. Keep your head up. It does take time to find the right combo of treatments, but when you do it's a major accomplishment.
Through all of this, I knew I wanted to do something to help others going through similar struggles. A few years ago I asked my mom if we could raise money to transform the treatment rooms at Sick Kids Hospital into a child-friendly place of hope and healing. I envisioned a colorful bubble-tube machine as a source of distraction. 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 fluorescent ceiling lights. Your donation to Jacobs Healing Rooms will help me make this wish come true. These new rooms will bring happiness to kids who are in the hospital and give them HOPE for a brighter future.