I’ve wanted a space for a very long time to connect my videos to written content. You can’t go watching videos about bowel disease in quiet spaces, now, can you? My goal was to transform my videos to reading material for those that prefer it that way. But it’s been hard. Have you tried to make a website these days? Don’t even get me started on paying someone to do it for you, although after the amount of time I spent working on this one, I see why the cost is so high!
I want to welcome anyone who is struggling with a long-term illness. Anyone who wants to learn how to self-advocate, or anyone who wants to advocate for others. I’ve been in the advocacy space long enough to know it didn’t always have a title. It was just sharing your experience online.
In 2009, about six months after receiving my ostomy in an emergency surgery, I was finally coming to terms with the fact I might be stuck with this “bag” for a while. I hated the way it made me look, but not the way it made me feel. I hadn’t felt relief from Crohn’s disease since well before diagnosis. All I knew was the fire-like pain deep in my abdomen and the severe constipation my inflamed intestines caused. I finally got a break from this, and it seemed to be because of this ostomy.
I hopped on YouTube, an interest I had had since its debut. I shared my story, wondering if I was the only sixteen-year-old to experience the debilitating symptoms. I knew other kids in school with Inflammatory Bowel Disease, but none seemed to be as sick as I was. Maybe they hid it better.
With a potato of a camera, I slowly started to share more and more details about what it was like living with Crohn’s. I didn’t expect many comments, but they came in. More and more patients each day came onto my channel to commiserate with me this awful diagnosis. I just kept thinking, “I’m not alone!’.
Thirteen years later, I sit here continuing to share on this exact same channel. I’m thankful for my sixteen-year-old brain for picking a name that has withstood time. The only difference now is that I shall continue to share on here as well. I won’t have six-hundred posts like I do videos, but it takes time. I’ll share what I think might be helpful and what I wished I knew when I was first diagnosed. I hope you enjoy.