A huge number of patients who have a chronic illness will turn to the internet to get their information. Unfortunately, most of the information they come across won’t be true.
Did you know that a mothers kiss can give a child IBD? Yes, it’s true, because I read it in a headline and saw the photos as proof! Unfortunately, what the headline and photo conveniently excluded was the fact that this might only apply to mice. Recent headlines about the causes and cures for Crohn’s Disease and Ulcerative Colitis have been making their rounds across social media again, and they often give a misleading representation of the data being looked at, especially when that data is coming from non-human animals.
As I listened to a podcast from my friend Stephen Dempster on the blog Behind the Times, he raised a good point that immediately got my tired brain working. He stated the following:
The question we should really be asking is not so much “Do you think we will ever find a cure for Crohn’s Disease?”, but rather, “Do you think we will ever find a cause?”
And it does raise a very important question, because how can we find a cure without knowing the cause (or causes…)? So I was immediately reminded of some of the theories I’ve heard over the past several years. Yes, none of these are to be taken very seriously, but it goes to show you that everyone seems to “know” the cause of Crohn’s Disease – it all depends on who you ask!
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.
I had the honor and great pleasure of being one of about a dozen Canadian IBD advocacy bloggers to be invited to attended the IBD Hall of Fame event held in Toronto on September 10, 2014. This was only my second time in a hotel since my ileostomy surgery last year, and it wasn’t without a few challenges, but things went very well and I’d like to share my experience about the event.
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…
The awesome #GetYourBellyOut IBD awareness campaign is putting on a calendar contest where they will be picking 12 winners to … Read more
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).
Several days after the BBC report came out that lifestyle choices (i.e. poor dietary habits, high antibiotic use) could increase the risk of IBD, the backlash is still being felt all over the internet by angry IBD’ers. In my opinion piece, Diet and IBD: What the research says, I made it quite clear that there IS evidence to support a link between dietary choices and IBD risk factors. It’s incredibly unfortunate that most of the people who’ve been upset seem to believe that they’re being told that dietary factors CAUSE Crohn’s or Ulcerative Colitis, despite the fact that Dr. Mitton made no mention to this whatsoever in the BBC report.
Dr. Sally Mitton has now been able to respond to the criticism:
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.