Evonne’s Story

Diagnosed with Ulcerative Colitis at 15 years old. Some doctors think in retrospect I’ve had Crohn’s/colitis all along. I struggled with proctitis for one year prior to my ulcerative colitis diagnosis and two months later had my large intestine removed in an emergency surgery due to toxic megacolon. I was in the hospital the entire time from diagnosis to first surgery with little time to prepare.

What was your biggest fear? 

My initial fear was the immense pain I was in prior to the first surgery. In those days they didn’t treat with pain meds soas not to mask the symptoms of worsening disease like toxic megacolon. After receiving the temporary bag in a staged operation, the biggest fear was the bag leaking – which it did – and how I could get on with my life and fulfill my dreams.

Was there something you were worried you would not be able to do after your ostomy surgery?

Not anything in particular. I just knew I had surgeries ahead of me and wanted to get on with my life – go to college, date, and eat everything…and could I do those things?

Did those fears become a reality or were you surprised you could actually do what you were worried you couldn’t? 

I realized early on with the support of my family that I was gritty and resilient and saw my scar as a badge of honor. If I could make it through this I could handle anything that came my way…and I did.

How has your ostomy changed you? 

I learned at the age of 15 when I got my first ostomy that I can’t control what happens to me,but I can control how I handle what happens to me. This lesson was the foundation for the rest of my life and I am learning that this lesson is what most people strive to learn their entire lives. So, I see my illness as a life changing blessing and that I was able to learn this lesson young enough to allow it to shape the rest of my life.

What helped you most during your recovery? 

A few things. My family support, humor and advice from my father that I should freely share my story because if left to the imagination others will think worse than it really is and the energy you give out is the energy you receive back. A turning point for me was when I got out of the hospital after my first ostomy surgery. I was very weak from months of being so sick from the ulcerative colitis and then a major surgery leaving me with an ostomy. My chance meeting with Rolf gave me the hope that I would get my life back.

Did something help prepare you for your operation?  If so, what was it?

I really didn’t have much time to prepare for surgery since we had to make this decision in 48 hours. My family was my bedrock all along.

What do you wish someone had told you before your ostomy operation? 

That having a bag wasn’t so bad and that I would be able to do everything with my ostomy. It might’ve prevented many of the surgeries I endured that were performed to keep me from having a bag.

Was there a specific WOC Nurse or a doctor who helped you that you’d like to thank? 

Joel Bauer, Dr. Irwin Gelernt (who has since passed), Dr. Stafford Broumand and Mount Sinai hospital in NYC – my second home after 21 surgeries and my medical school Alma mater.

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