What would it take for the world to start taking Crohn’s disease and ulcerative colitis seriously?
This was my best friend growing up. She saw me through my awkward pre-teen and teenage years, taught me how to kiss boys, helped me shop for “cool clothes”, and so much more. In my world I was the skinny blonde haired, freckled faced dork from private school, and she was everything opposite of that. You couldn’t find a more mismatched pair, but we were BEST friends. It would be nice to see her today and laugh about old times and create new memories, but we can’t. We can’t because she passed away. My friend lost her life after surgery for her Crohn’s disease.
This week we lost another member of our community. I did not know her personally but she was a member of some of the online groups I belong to. I don’t know full details but Karrie Jacobs died three days ago because of a stricture. This isn’t the first person we have lost online and Jessica isn’t the only close friend I have lost in my life who had Crohn’s disease or ulceative colitis. A friend of mine from camp passed away from Lymphoma cancer. She was on remicade and though they can’t 100% confirm that it was the remicade that gave her the cancer, she was the first one messaging me on facebook when I was deciding whether or not to start it, warning me that she had Lymphoma. A year later another girl from camp passed away from Lymphoma cancer…
This doesn’t even touch on the number of people I know (myself included) who have come close to death but were lucky enough to escape. Friends who have gone septic, friends who have had life threatening infections, etc.
It’s true that most people who are diagnosed with Crohn’s disease or ulcerative colitis are not going to die because of it. But the truth is, some people do. While it was complications of surgery that caused my childhood best friend to pass away, she never would have had that surgery if she didn’t have Crohn’s disease. It was cancer that caused my beautiful friend and co-counselor to pass away, but in my mind I don’t believe she would have gotten that cancer had she not been taking a biologic.
My point. These diseases are serious. This isn’t just a little GI disorder. These diseases are causing major damage to our organs. Patients with IBD can experience bowel perforation, toxic megacolon, malnutrition and malabsorption, fistulas, abscesses, and so on. Not to mention the side-effects of some of the medications we have to take. I don’t write this blog to scare anyone and now that I think of it, it does come off pretty scary. But I really dislike when we are not faced with all the facts. With reality. This is real. We have these diseases and they are serious. It is the loss of patients with IBD that fuels my fire even more to educate the world about Crohn’s disease and ulcerative colitis, and to want to hug you patients tight and support you even more.
I don’t want you to be scared. Don’t be scared. I’m not scared.