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.
Hi all, One thing I have noticed in the past few years is just how many people seem to be living with IBD. and how young some of the sufferers are. I have a friend who,s daughter has had colitis since early teens and although doing well now it did have an impact on her exams etc. and just last week seen on TV a young girl who has had surgery and only in her early 20s. Plus I have seen the illness in it early days being mistaken for the person being lazy or depressed. We all have a duty to make the world more aware by sharing experiences which help other ostomates and help raise support. Well done Vivienne you and Laura go for it!!!
Yes, IBD has been on the rise just about everywhere for some time now. But at the same time I believe that more people are open to talking about it and using the internet to share their stories.
I’m glad that we can at least have a voice in this.
Well said Eric! It’s easy to fall into complacency post surgery when (if!) life returns to being ‘normal’ . . . in fact even better than ‘normal’ because you appreciate it so much more. And of course there’s no value in focussing on what COULD happen or worrying about when Crohn’s might rear it’s ugly head again, but to have an actual cure would be amazing! As mum to a currently happy and healthy post surgery Crohn’s sufferer (Laura, aka Stomalicious) I could think.of nothing more wonderful! Thanks for your regular posts and awareness raising. 😍
Hey Vivienne! Thanks for writing, and double thanks for being a super mum to Laura!