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Getting Involved in the IBD community

The following is a piece I wrote for the Crohn’s and Colitis Foundation of America (CCFA, http://ccfa.org/) regarding youth involvement in the organization, but it works for all ages. Some of it also applies to all illness communities. I hope you find it helpful!

My name is Alyssa Zeldenrust, and my guts have been misbehaving since 2003, when I was diagnosed with Crohn’s disease. I am 22 years old, and I have had my permanent ileostomy since 2010. I grew up in the suburbs of Chicago and have also lived in Michigan while gradually pursuing a Political Science degree at Hope College.

I want to share a declaration: I am more than my disease. That may seem obvious, but the effects of this statement dramatically shape my life. I have Crohn’s disease and a permanent ileostomy, but I desire to be known for more than these conditions. I am a Christian. I am a student. I am a lover of the earth, art, good food and good company. I love fighting pain and injustice with compassion. I am a hugger. I choose to have these statements define who I am beyond my diagnosis.

I am empowered to manage my health, fight the stigma of gut diseases, and become an advocate for you because I have embraced this powerful community of empathetic friends. My exploration of the Crohn’s and Colitis community yields new discoveries every year, and my fabulous “gut buddies” are a welcome refuge from a world full of people who just don’t understand our health issues. Now I am so enthusiastic about IBD advocacy that I discuss it with complete strangers. Getting to this point takes time, practice, and support. For me, the process started with the CCFA.

Since my diagnosis, life has been all kinds of crazy, which is why I got involved in various CCFA programs almost immediately. I have participated in Take Steps walks, Camp Oasis, and the annual Educational Symposium in Chicago. Whether you’re newly diagnosed or a veteran, I encourage you to take full advantage of everything this organization has to offer! If you want to get involved but don’t know where to start, you can browse the major events listed on this site, or talk to your local CCFA chapter about upcoming opportunities. Mine has a Facebook page where they post updates about local events and volunteer requests, so I always know what’s going on. Fundraising events are fun for you, but they also provide an opportunity to educate your family, friends, classmates, and teachers about IBD. The Educational Symposium is a great place to pick up new information, swap stories, and check out new products. My absolute favorite way to get involved in the IBD community is Camp Oasis. I went to the camp in Waupaca as a camper and as a junior counselor six years ago, and I still keep in touch with some of the beautiful goofballs I met there.

There are a few ways you can personally connect with members of this community regardless of your age or current situation. Most importantly, don’t be afraid to ask questions or share stories! The best part of seeking gut buddies is the moment you realize there is a group of people who understand every detail of living with your disease, and they want to make your life better. Aside from camp, I have met most of my IBD friends online through blogs and Facebook groups. In addition to sharing words of encouragement during rough times, we all share a great appreciation for bathroom and medical humor. Let’s be honest, there are some gross things our fellow gut-malfunction experts find hilarious that we would not say around most people.

My dear friends have taught me that you can offer and receive support no matter what physical or emotional issues trouble you. Sometimes it’s easier said than done, but I think we all underestimate our power to provide hope and improve lives. One of my personal aspirations is to use my voice for the benefit of people like me. My current focus is sharing information with others in order to combat the isolation we often feel. I want everyone to know that they are not alone, and that they are more than their diagnosis.

One way I do this is by joining every IBD Facebook group I stumble across and writing down every handy website and interesting blog. I find fellowship with others and we support each other through the journey. As I discover helpful information via these groups and websites I constantly wish I had found them sooner and so I have created a blog focused on practical tips and guiding readers toward relevant, reliable media. Through this blog I aim to share my findings and collaborate with as many people as possible by putting my assortment of acquired knowledge to good use and hopefully preventing somebody from learning a lesson the hard way. How will you use your voice?

A few activist buddies at the CCFA Conference: me, Andrea Meyer and Megan Starshak (founders of The Great Bowel Movement and designers of my shirt), and Ally Bain (the brains behind The Restroom Access Act).

Update: Now I’m on the CCFA homepage, and my article called “More Than My Diagnosis” is one of the featured resources. I did not expect that.


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