I was recording a video this afternoon for an upcoming product review, and I received a notification from Google+. Interested about why I’d be tagged in a comment from Megan, The Front Butt YouTuber, I checked out the post and subsequent video. Megan had posted an awareness video for ALS or Amyotrophic lateral sclerosis; you might know it as Lou Gehrig’s Disease.
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…
Something happened recently that really angered me. One of the founders of the #GetYourBellyOut campaign, Sahara (Twitter @Sahara88uk) had recently come out of surgery, and while still recovering she posted a photo of herself on several social media sites, but the photo was flagged on Facebook and she was forced to remove it.
One year ago today, I launched the VeganOstomy Blog. I started it with the wish to share my experience of having an ileostomy due to Crohn’s disease while maintaining a vegan lifestyle. I’ve learned so much in the past year and hope that I’ve provided some entertainment and education along the way.
Through the blog, I’ve been contacted by so many wonderful people who are at a critical point in their lives. Some have Crohn’s disease or Ulcerative Colitis, and others have cancer, but everyone is a fighter. The strength I witness from people who’ve been to hell and back is truly inspiring. Without your stories, my efforts would be wasted. Know that I stand beside you in support, and know that you are not alone.
It’s all done. Over with. Finished. I was given my first ileoscopy yesterday and it was an interesting experience to say the least! I initially had some concerns with dehydration and managing high-output from the prep (read HERE), but I’ll have to admit that things went a lot easier than I expected. I took a lot of notes, so hopefully this will give you an idea of what to expect, but keep in mind that our experiences can differ greatly.
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.
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.
It’s May 19, 2014 (A.K.A: World IBD Day), but I don’t feel that it’s a special day to me. Since getting my ostomy back in August 2013, I’ve been an active member of the IBD and ostomy community, and I’ve finally had the energy to help answer questions, raise awareness or simply be there for someone else with IBD or an ostomy who’s looking to open up about their challenges. But the thing is, EVERY DAY is an IBD Day for me. How can it not be? Every joint pain, every worry about next flare, every peek to see how full my ostomy pouch is a constant reminder that IBD is still a passenger in my vehicle of life.