Despite all the wonderfully positive stories you might see on the news or on blogs about IBD’ers who’ve overcome personal obstacles, it probably wasn’t always easy for them. Many of us haven’t climbed over those obstacles yet, and continue to live a life of pain and suffering. Many IBD advocates have attempted to bring these issues to the forefront, but our message about the true challenges we face when living with Crohn’s and Ulcerative Colitis usually goes unnoticed by the general public. I hope to bring some of those challenges to light in this article.
Anyone with an invisible illness can tell you that at some point they were told that they “don’t look sick”. That comment often ranks first among a list of things you shouldn’t say to someone with IBD, but it never really bothered me. I know I likely stand alone in saying that, since being told that you “don’t look sick” when you’re life’s under constant assault because of illness can be hurtful, but hear me out…
IBD stands for Inflammatory Bowel Disease, yet a large percentage of us with IBD (estimated to be upwards of 40%) experience extraintestinal manifestations (symptoms outside of our gut). These symptoms can sometimes be as hard to deal with as the abdominal symptoms of IBD; for some, they’re even worse.
Since I frequent so many IBD forums, I often get to read about the experiences of newly diagnosed people, but one thing that struck me as odd was how many “veteran’s” with IBD had no idea that they could even have extraintestinal manifestations. Hopefully, this post will shed some light on the topic.
This year I have a chance to fight back against Crohn’s and to show that I still have plenty of fight left in me. Along with my daughter, Jasmine, I’ll be participating in this year’s Gutsy Walk, presented by Crohn’s and Colitis Canada on June 8th, 2014.