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.
We have so many amazing advocates in the IBD and ostomy community, but one team of advocates really stands out with a campaign they’ve been able to turn into an international sensation, and that’s the #GetYourBellyOut movement.
Started in March 2014, the #getyourbellyout team is made up of four incredibly hard-working ladies: Victoria Marie (twitter @colitisandme), Gem Gem (twitter @wales28), Sahara (twitter @Sahara88uk) and Lorna (twitter @lornamary_1981).
In this post, I’d like to go over some of the environmental risk factors associated with IBD. While discussing diet in relation to health isn’t easy, I’m hoping these other risk factors are easier to deal with, without anyone becoming defensive, offended, aggressive and just plain insulting by the research.
Every time misinformation about IBD hits the media, you can be sure that the entire IBD community is up in arms – and rightly so! This happened today after BBC reported that junk food may be the cause of Crohn’s. What?? Junk food is the cause of Crohn’s disease??
Now before I say my piece on this, let it be clear that these are my own opinions and I’m not an expert. I’m just a guy with Crohn’s who’s looking for answers. I think that finding the cause of IBD is the first step in developing a real cure. I hope that this post will spark discussion, not finger-pointing, not shaming, not a loss of friends or a break in the community. We all want the same thing, let’s just use our heads to get there.