More than my diagnosis – Youth and IBD
Written by Alyssa Zeldenrust, a 22-year-old Crohn’s patient, political science student and passionate blogger
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 have had a permanent ileostomy since 2010.
My declaration: I am more than my disease! 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 to define who I am beyond my diagnosis.
I am empowered to manage my health, fight the stigma of gut disease and become a patient advocate because I have embraced a 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.
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. My chapter 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, 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 6 years ago and I still keep in touch with my camp friends.
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 understand each other.
My dear friends have taught me that you can offer and receive support no matter what physical or emotional issues trouble you. 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.
Please visit my blog: http://loveformutantguts.wordpress.com/.
For further information, call CCFA at our Information Resource Center: 888.MY.GUT.PAIN (888.694.8872).
The Crohn’s & Colitis Foundation of America provides information for educational purposes only. We encourage you to review this educational material with your health care professional. The Foundation does not provide medical or other health care opinions or services. The inclusion of another organization’s resources or referral to another organization does not represent an endorsement of a particular individual, group, company or product.
About this resource
Published: June 1, 2012