May 19th, 2017 – It’s World IBD Day again, and I’ve taken a lot of time to reflect on what it means to me.
For those who don’t know, I was diagnosed with Crohn’s Disease in 2008 and had a pretty rough go for several years prior to having my ostomy surgery in 2013.
During some of the worst months, my focus was purely on survival; getting through each hour of each day was the only goal I had, only to do it again over and over hoping that something would change or some breakthrough would be announced.
That breakthrough never came, and I was forced into having surgery that meant losing my colon and rectum. But better days were ahead.
Since my ostomy surgery, I’ve been able to live a more normal life, but this sense of wellbeing is an illusion – smoke and mirrors. I still have Crohn’s Disease.
People living with Inflammatory Bowel Disease will always have it until a cure is discovered. And regardless of whether we are in clinical remission or have had surgery and feel better, nearly all of us continue to live in fear in one way or another.
And it’s not a fear that IBD can come back that worries us, but the fear of knowing that our disease will not wait until it’s convenient for us to get sick. IBD doesn’t give a damn about our plans, our family, our education, or our job. When it decides to come back, it will do so without a shred of compassion or consideration for the shattered lives it leaves behind.
But the fear that my disease will come back is not what pains me. What really hurts is knowing that millions of people living with IBD still have a fear that their nightmare will return – many are already living that nightmare on a daily basis with no relief in sight.
The IBD community is strong as a whole, but we still have too many individuals suffering daily, and we have to continue to fight for them.
Never should we be ok with children forced to grow up in hospitals.
Never should a student, who only wants to make a difference in the world, have to drop out because their illness prevents them from getting an education.
Never should a parent have to tell their child for the hundredth time that they are too sick to play.
Never should we ever have to learn that another friend is in the hospital or dead due to complications from their illness.
I don’t accept this, and it’s not the world that I want friends and family to live in. So we must continue to fight, continue to advocate, and continue to support each other as we move closer to finding a cure.
I’ll be participating in this year’s Gutsy Walk for Crohn’s and Colitis Canada on June 4th, 2017. If you’d like to support the cause, please donate to the official page. This money will go towards funding research to find a cure, patient programs, and advocacy for those living with IBD.