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Crohn's Disease Forum » General IBD Discussion » Tips of Dealing With Crohn's Disease


01-18-2007, 12:59 PM   #1
mikeyarmo
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Tips of Dealing With Crohn's Disease

This is some advice from a teen who suffers from Crohn's Disease. Thank you to www.crohnsandme.com For letting us share this.

Teen Takes on Crohn’s and Lives Life Beyond Boundaries -- You Can Too

Whether you’re just diagnosed or have been living life with Crohn’s for some time, it is always helpful to learn from others in your shoes. Read the tips provided below from Ally Bain, a Chicago teen with Crohn’s disease to learn how you can reach beyond the boundaries of the disease to live well — healthfully and happily. You can also find out more about how 16-year old Ally faced her Crohn’s diagnosis in 2001 head on to lobby behind her own restroom access law in Illinois by visiting www.CrohnsandMe.com.

In 2004, when Ally was 14, she was denied access to a retail store bathroom which led to a humiliating accident. Ally and her mother approached Kathleen Ryg (Illinois State Representative) to sponsor a bill which would enable others with CD and related conditions be provided with access to the facilities, regardless of whether or not it is a public restroom. In 2005 The Restroom Access Act, commonly known as Ally’s Law, was unanimously passed in Illinois. The law requires businesses to make employee-only restrooms available to people with inflammatory bowel disease and other medical conditions such as pregnancy and incontinence. The law is currently being pursued in other states.

Ally’s Tips For Reaching Beyond the Boundaries of Crohn’s Disease

Have a solid and complete support system
I have several people who are my biggest supporters: my parents, my brother, my friends, and my doctor. Each one of them brings a different source of support whether it is comfort, admiration, good care giving or simply being by my side when I need it most.

Maintain a positive attitude
I try to find the best in every situation. I don't want to feel like my Crohn's disease is holding me back in any way. I spend time with my family, hang out with friends and I enjoy school. I also try to find things and hobbies to relax myself when I am not feeling well or need a source of relief. I love art, writing poetry, reading and just dancing and hanging out with my closest friends.

Tell teachers, coaches and colleagues
At the beginning of school, I make sure all of my teachers are aware of what is going on with my disease. I explain what Crohn's disease is, ways to help my school day stay stress free and make it known that whenever I need to use the restroom, it is rather urgent. I also have my school counselor or nurse send e-mails to all of my teachers explaining my condition and ways to help me when I need it. I make sure my teachers know that if they have questions, I am willing to share answers. I prefer they know a lot, rather than be naive and risk me being uncomfortable.

Whether it be school or work, if the appropriate people are informed, it can make managing day-to-day symptoms easier and limit their burden on your daily life.

Have a good patient-doctor relationship
Talk to your doctor and he or she will talk to you. I tell my doctor everything he needs to know about my disease, even when it might be embarrassing. His attitude toward my disease helps me to stay positive and strong. I trust in his care and I know we are in this together.

Think of all the things you can do
With Crohn’s, I have learned just how strong and tenacious of a person I am. I have learned who my true friends are and how much my family cares for me. I have also realized that I learn something new with each person I meet. I feel like my work with Ally’s Law helps others and makes a difference for people living with this disease. I am very proud of myself, my family, my friends, my doctor, and each and every person that helped me get the law passed. I hope everyone with Crohn’s will stay strong, be positive, and know that one voice can really make a difference.
01-26-2007, 01:59 PM   #2
Maggie-Muffin
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Join Date: Jan 2007
Everybody can learn from her, thanks Mike
~~~HUGS~~
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