I have been living with Crohn’s disease for over 15 years, but surprisingly I just attended my first event in the Crohn’s and Colitis community a few weeks ago. That may sound strange, but here are a few reasons why:
I have been in remission (a significant reduction in symptoms) for years.
I have been living medication-free the last two years.
With years of stable health the support provided by the Inflammatory Bowel
Disease (IBD) community was not something I needed as the support of my family and friends more than sufficed
I wasn’t aware of the types of community events and support I could be a part of.
I have heard countless stories of people living with Crohn’s disease that cycle through bouts of debilitating symptoms and frequent hospital visits and even those patients with more severe cases that have resections (surgeries to remove diseased sections of the intestinal tract) and end up with ostomy bags as a result of the removal of the colon.
In the years following my diagnosis and initial flare up, my abnormally stable condition and mild symptoms compared to the majority of IBD patients prompted skepticism from my doctors. One of my doctors even questioned the possibility of a misdiagnosis as I clearly remember him asking me “Are you sure you have Crohn’s disease? You’re the healthiest patient I’ve ever seen”. But genetic testing and colonoscopies confirmed that indeed I do. Over the years I’ve often asked myself- “ Why have I been so lucky?” Genetics? Discipline with diet and stress management? Pure luck ? There’s clearly no right answer, likely a combination of all three.
The event I attended a few weeks ago was the Crohn’s and Colitis Foundation (CFFA) Take Steps walk in Fort. Lauderdale. As I arrived to the registration tent I was asked- “Are you a patient or a supporter?” My gut reaction was to say “supporter” since I haven’t been on medication or regularly seeing my doctor so I haven’t felt like a patient in awhile, but I am. Thus I meekly responded “patient”, almost feeling like an impostor. The woman handed me a bag of gifts, smiled and said “ Thank you for being an IBD hero”. After registration there was a short program presented on the event stage. At one point the presenter called to the stage anyone who had been living with the disease for 5, 10, 15 and 20 years. I walked on stage as I fell into the fifteen year category.
Within these first few minutes at the Take Steps Walk I had a realization: I don’t give myself enough credit or acknowledgement. It’s heroic to deal with the daily struggles that accompany living with a chronic disease. It’s heroic to accept and adapt to the disease. It’s heroic to live with this disease on my own terms, instead of what my doctors dictated to me. I’ve never thought of myself as hero but now I do. I am an IBD hero.
While my health has been stable for years, there are always symptoms and periods of time when my higher stress levels affect my well being significantly. I don’t often vocalize these struggles because I know there are patients dealing with far worse complications. My intention was to go walk in solidarity and support for the community. But in fact I realized I had detached myself from my own experiences of the disease. In this way Take Steps Fort Lauderdale was unexpectedly powerful, touching and inspiring for me. I reconnected to my experience with the disease.
At the event I met two impressive young girls who created a not-for profit organization called 3 Heart Strings. They attend fundraising events for different organizations and donate all the profits of their bracelet sales back to the organization. This month they chose the CCFA. I purchased a couple bands from them, which I proudly wear. You should consider them for your next fundraising event!
In my journey to health I have become passionate about sharing my story and knowledge in order to help others struggling with chronic health conditions. My time to become involved in this community has been long overdue. It’s not so much a desire for me, but rather I feel its my duty to share my experience because if that can positively impact the lives of others, then withholding that information would be a disservice to the community.
One size does not fit all within the IBD community because each of our physiologies are vastly different. A food that triggers averse symptoms for me may be a food that is integral in the diet of another IBD patient. Thus there is no ideal diet for a patient in this community and the healing remedies I use may not work for everyone, but if I can inspire others to consider alternatives that result in health benefits, then I consider my mission accomplished.
In recognition of World IBD day, which occurred just last week, I have included an infographic from the CCFA. Many people don’t know enough about these diseases and I hope to raise more awareness.
Check out the links below to see how people all over the world are supporting the IBD community in their struggles with these debilitating digestives diseases. If you feel inspired please make a donation to the cause!
A good article debunking the myths of IBD diseases:
http://www.huffingtonpost.com/michael-osso/ibd-is-more-than-just-a-bathroom-disease_b_10030954.html
Crohns and Colitis Foundation of America:
http://www.ccfa.org/WorldIBDDay/
World IBD day events:
http://www.worldibdday.org/partnersworldibdevents.html
How to get involved in the next Take Steps Walk in your community:
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