This is a very brief post because, quite literally, my panties are in a bunch about something I just read….
Having been born with the assorted party pack of autoimmune disorders I get sent a lot of medical reading – from a lot of different sources.
Today I was sent a story about links between two chronic conditions – mine and another that I won’t name (purely because I’m at the very beginning of researching it and I am as yet uneducated about it). The first paragraph stated “**** and Crohn’s Disease are painful chronic conditions – the link being IBS…..” Ok – stop right there. First of all, this was on one of the “official” sites for **** disease. So – it makes the people who run the site and write for it look pretty fucking stupid.
Crohn’s disease IS NOT IBS. IBS stands for Irritable Bowel Syndrome – which has some painful digestive symptoms, sure. But it doesn’t have the inflammation that comes with IBD. The inflammation that attacks our bowel, our joints, our eyes…. it’s a long list. The inflammation that causes obstruction and scar tissue that we need surgically removed. If you have been diagnosed with IBS – hey, I’m the first one to feel for you – but let me tell you after so many colonoscopies I’ve lost count and a few surgeries, it’s not the same. They don’t give IBS patients high dose steroids or immunosuppressants. I’m all for support and advice sites – but it’s critical that the people writing for these pages have some kind medical professional fact checking. And before I get the “that’s what you do…”, no, this is not a support or advice forum, it’s just me, telling you my story. I am not in the position to give anyone advice about anything – trust me on that one.
I know I shouldn’t let this kind of stuff get to me – but it’s these kinds of uneducated pieces flying around the internet that lead to others not taking debilitating conditions like Crohn’s seriously. It leads to problems getting proper and adequate pain relief, timely appointments and proper physical and mental care.
If you have Crohn’s, know someone with Crohn’s or are researching it for any reason – one of the best online resources is Crohn’s and Colitis Australia. I encourage anyone with questions about the disease or it’s potential links to other illnesses to contact the CCA or ring the help line rather than reading the litany of un-researched half truths available through google search on the internet.