Wednesday, April 6, 2011

Help is ALWAYS needed

Living with Crohn's can make you feel isolated from the rest of the world. Everyone else can go grab a quick bite to eat, have drinks at a bar, scarf down their Easter candy, and stay away from the hospital. Now, most people with IBD can do these things as well. However, we know that there will be severe consequences. I can't go to Charm City Burger and indulge because I know I will be spending the rest of the evening in the bathroom. I can't go to Chucky Cheese with my nephew and share a small, greasy cheese pizza. But I can join for good company. Yes, it's awful watching people eat what you know will turn your body into a hot air balloon (filled with the smelly kind of gas). Easter will be extremely difficult without my candy-filled basket. Those close to you will try to understand and feel sympathy for you. Maybe they will even partake in your healthy diet. Family is always a superior support system. Right now, living with this disease, you need all the support you can get!
I am a firm believer that knowing someone else with IBD is a great advantage to a healthy future. People with IBD can say with honesty, " I know how you feel." This is why I appreciate organizations like the Crohn's and Colitis Foundation of America. After my diagnosis I gathered so much information from their website: The non-profit organization is dedicated to finding a cure and bringing the IBD community together. They have numerous events year round that allow you to be involved. The seminars are immensely beneficial and informative. Medicine is constantly changing and it's important to keep up with the latest research. The organization gives you the tools to gain knowledge and truly understand what's happening within your body.
My absolute favorite offering from CCFA are the support groups. There are different chapters depending on your location. Right now I am speaking of the South Florida chapter. The group meets the first Tuesday of every month. A CCFA volunteer generally leads the group discussion, but everyone has a voice during the session. You can ask all the embarrassing questions you want. Finally you can see faces of your fellow survivors. This makes you realize you're definitely not alone. People are nodding their heads in agreement, because they've all been there before. Even though the disease affects people differently, it's still nice to hear opinions and recommendations. Sometimes it's even nice to be with other people who can laugh and find the positive in life with IBD.
For me, I leave the group feeling motivated. I'm ready to control the disease and not let it take over my life. I feel ok with feeling sorry for myself from time to time. I feel lucky to be in love, lucky to have a life. I look forward to the next support group session. I feel like I've gained new friends who will greatly influence my life. I feel comfortable with the word Crohn's.


  1. Carly, are you part of the Crohn's Disease Support Network? if not, look it up. some of my most helpful networking is through that group :)

  2. Oh I really understand where you are coming from. Nobody knows like a fellow Crohny.