Today is World IBD Day and my fellow ostomates, colitis friends, IBD patients, and chronic illness advocates are banning together in purple in an effort to raise awareness for this disease. People talk about cancer, they talk about MS, we’re even beginning to talk about mental health. But we still rarely talk about IBD. Why? Because it’s shitty.
I couldn’t help but feel inclined to write a small post reflecting on what this day means to me as my own small contribution to raising awareness for IBD. I began this blog as my own outlet and means of therapy but I also wanted to open up a dialogue about a disease that truly became debilitating to my own life, and those close to me. I may not have a large following but I already feel I have educated and opened eyes in regards to Ulcerative Colitis and ostomies. I hear people asking me questions almost daily, and I am more than happy to answer. Just last week my cousin said to me. “Watch me cross my eyes. Watch me roll my tongue. Tell me something weird you can do with your body” And I said…”I poo through my stomach.” And I won that round….. I answer questions almost daily. Yes, I had bloody diarrhea 20 times a day. Yes I now eliminate waste from my stomach…into a bag. Yes I can still pee. No I am not currently on medication. No my diet isn’t completely normal. Yes I feel healthy….Keep the questions coming.
I’m also reflective of the small community I have now become apart of. Although most connections to fellow IBD patients are online via social media, those real life connections are also forming. I’ve connected with people in Alberta, Toronto, Australia, Nashville and the UK. It was only yesterday that I met a new friend who went through a similar process of having a colectomy and a J-Pouch. He offered advice, motivation, inspiration, and encouragement. It was refreshing meeting someone who is now happy and healthy after being through an experience even worse than mine.
I then also read comments on my own Instagram and Facebook from family and friends and strangers offering encouraging, kind words, letting me know that it’s okay that I keep writing. People are interested and I perhaps have a story to share that might in fact inspire one person. Even if it’s just to know that we all come with extra baggage.
I also have so many gutsy contributors who have helped me raise over a $1000 for this year’s Crohn’s and Colitis Foundation. People who may not have ever known such an organization exists have reached into their wallet to help those like me. I am so so appreciative of those donations and cannot share my gratitude enough. The Gutsy Walk means so much to me in the sense that one Sunday morning each year, a small group of individuals come join me to show their love and endless support. And that’s all I need.
Just this morning I wore my hair down for the first time to work. And a parent walked past me and said, “HEY! Looking good! Back to normal! I like it.” And that comment alone validated that I will continue to get through, and people continue to care. This is what World IBD Day means. It means people are connecting, showing compassion and empathy, and kindness. It means people feel reassurance and acceptance. And it means people know that they continue. I have a long road a head with potentially two more surgeries, time off, and a slew of anxiety. But I can continue on. Thank you to anyone who reads this, and becomes a part of my small extra baggage community.