INNOVATION & GADGETS

Embracing Your Disability with Ulcerative Colitis

Other

Summer Nestlerode

The Beginning

My name is Summer and in June 2018 I was diagnosed with Ulcerative Colitis. The plan was to do Remicade infusions every 8 weeks, but this medication did not work. In July I was admitted to Cedars-Sinai where Dr. David Ziring, a Crohn's and Colitis specialist, works. It was here my diagnosis was changed to Crohn's Disease. We stopped the steroids and tried Stelara, another medication. The medication worked, just not on my colon. The doctors said that my colon was too far gone. In an emergency surgery, Dr. Phillip Fleshner took out my colon and gave me an ileostomy.

Facing the World

I was terrified to leave the hospital and go out into the real world with my ostomy bag. I didn't want to go to school, or even hang out with my friends because I was embarrassed. At first, I tried to hide my ileostomy and pretend that I didn't have it. However, as time went on I realized that it was extremely difficult to hide my ostomy. As I opened up to my friends about it, I found that I shouldn't be ashamed about something that saved my life. I became proud of my bag and grateful for it.

Learning to Open Up

I found that opening up about my illness and my ostomy bag was easiest when I told people about the medical facts. I didn't start with the details. At first I only spoke about the illness and what an ostomy bag is. I did not share about MY illness and MY ileostomy bag. Slowly, I worked my way into telling my friends and family about how I was being affected by everything. I told them how severe my case was and about my acute onset. I found it easiest to slowly work my way into telling my story and the details about my journey.

Finding Confidence and Happiness

It's not easy living with a disability and telling others about it. However, your disability is part of you. It might be hard to open up to others about your disability, but I have found that being confident and proud has made my disability much more easy to cope with. By opening up about my illness and my ostomy, I was able to start living my life normally again. While I was hiding it, I found myself starting to isolate myself from friends, family, school, sports, and many other things. By embracing it, I was able to enjoy the things that made me happy. If I am going to be honest, having a disability sucks, but I’ve learned that you can’t change it. If you are struggling or hiding a disability or something else, I encourage you to find confidence and happiness with it. It makes it a whole lot easier!

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