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Why I do what I do

I have recently been thinking a lot about how I can make The Stolen Colon better. I’m trying to figure out how to take the next step and move forward with the content I am creating. I have spoken to many people, looking for ideas. I’m saving money for software so I can put together a better site.
But as I’ve been doing this work, it has made me stop and think about why I do what I do. Why do I take the time to write about experiences I have? Why do I want to share intimate details of my life with a disease that is far from glamorous? Why do I work hard to put together a good experience for those who come across my blog?
I realized that I want this to be more than a blog. I want this to go beyond being a personal diary of my life. For the majority of years that I’ve had inflammatory bowel disease, I didn’t know anyone else personally who was also living with this disease. I never had anyone I could talk with about the pains and embarrassment. I never wanted to share those dark moments with anyone else because I felt it was too disgusting and they would feel differently about me. But now that I have some of those people in my life, I realize how invaluable they are. Having someone who understands and can even one-up me every now and then has made living with this condition so much more bearable. And that’s what I want from this blog. I want it to be a place where people can come and realize that it’s going to be OK. To realize they are going to make it through this and they are still going to be able to live a full life, doing all of the things they’ve always wanted to do. To realize they are not alone and someone, somewhere, understands exactly what they’re going through.
Beyond that, I also want to raise awareness of what it’s like to live with IBD and with an ostomy. I want to be an advocate for the millions of people out there who are living with these conditions. I want to actively change the perception of Inflammatory bowel disease from something that is taboo and too embarrassing to discuss openly to something that is understood and taken seriously.
Sometimes I feels that I don’t know how to get there. I hits me how small I am in the infinite world of the internet. But just last week, I was so humbled to receive and email telling me that I had been nominated for a WEGO Health Activist Award. WEGO explains that the awards are to “honor the leaders who made a real difference in howWEGO health activist award rooke of the year stephanie hughes stolen colon ostomy crohn's disease blog we think about healthcare and living well in 2012.” I can’t tell you how much it means to me to have somebody nominate me. I know that I am a long way from the rather lofty goals I have for this blog, but it makes me feel as if I’m moving in the right direction. To whoever nominated me, “Thank you, from the bottom of my heart!”
I was nominated for the “Rookie of the Year” Award, which is “awarded to a Health Activist who came on the scene in 2012 but has inspired the entire community.” I don’t think there’s any other award they have that I would rather be nominated for this year. Now I just hope and pray that I can live up to that description.

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7 Comments

  • Reply Molly Beeke

    Congrats Stephanie!!

    October 15, 2012 at 8:50 am
  • Reply fullfrontalostomy

    I know you can make this blog, and your life, whatever you want it to be. For what it’s worth, I think you are extremely inspiring and are a valuable asset to the IBD and ostomy communities. Don’t put a cap on where you want to go with this – you can take it as high as you want. 🙂

    October 15, 2012 at 8:56 am
    • Reply Stephanie Hughes

      I appreciate that more than you know. So good to see you tonight!

      October 15, 2012 at 10:15 pm
  • Reply Cara @ gottago-ibd.com

    Congrats! I love the reason that you write your blog because it is the same reason my sister and I started writing. She didn’t have any one to turn to growing up with ulcerative colitis but I was lucky enough to have her when I was diagnosed. It makes a world of difference to talk to someone who truly knows what you are going through versus someone who just says they understand but cannot possibly imagine.Thanks for writing your blog 🙂

    October 15, 2012 at 9:35 am
    • Reply Stephanie Hughes

      Thank you, Cara. You guys have such a unique story. I know it must be comforting to have someone there with you every step of the way and to be prepared for how to deal with everything. When I was diagnosed, I had no idea what “Crohn’s” even meant. I’m glad you guys decided to write about it and I’m glad I came across your blog!

      October 15, 2012 at 5:39 pm
  • Reply Adam

    Congrats on the award!
    I do website integration and development. If you’d like, as a favor, email me and let me know about your goals are and what software you’re looking at. Maybe I can help you find a solution that you won’t have to pay for.

    October 17, 2012 at 12:32 pm
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