Her story

Navigating life with Crohn’s disease

Founder Stefanie Fish Shares Her Daughter’s Story

September 22, 2021

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Stefanie Fish, Associate Vice President and her daughter

Here’s her story in Stefanie’s words

I remember my daughter as a healthy child, hardly ever sick. But around age 12, everything changed. Suddenly, She wasn’t just sick – she was severely ill.

It took about a year for doctors to figure out my daughter had Crohn’s disease. She was fearful of doctors, and became good at hiding her symptoms. We received and later ruled out several diagnoses. In the meantime, she was getting more and more ill.

Finding a diagnosis

During her first hospital stay, doctors finally discovered her Crohn’s disease. A team of doctors listened to our pleas and admitted my daughter for her stomach pains; their battery of tests then revealed an intestinal virus seen only in extremely immunocompromised patients. Then a colonoscopy confirmed Crohn’s disease.

By the time we realized the extent of her illness, her immune system had all but shut down – but not before it had severely and permanently damaged her colon.

Managing the disease

My daughter’s life with Crohn’s disease has been difficult. She has regular flare ups that have to be managed, sometimes with trips to the hospital. The pain can be challenging and the flare ups require a liquid diet, sometimes for weeks or months at a time to help her gastrointestinal system heal.

My daughter has learned what foods she can eat and which she can’t – popcorn and steak are huge no’s. Sometimes we never know what brought on a flare. She’s sadly used to having them at the most inopportune times, like vacation and summer camp. Life with Crohn’s means sometimes visiting doctors out-of-state. Over the years, she’s missed many days of of school, and though she proudly graduated high school this year, she feels her disease undermined some of the things she could have experienced. That’s tough to think about.

A positive attitude

With her positive, inspiring attitude, you’d never know how tough life has been for her.

I try not to remember that lost year when she suffered without a clear diagnosis. She is considered immunocompromised and must manage that.  With the COVID-19 pandemic, she must make tough decisions like whether to be virtual for her first year of college as a molecular biology major.

My daughter makes the best out of her disease. When she’s pain-free, she appreciates her life in a way few people do. And though her Crohn’s will never go away, through it all she has found a village of loved ones and friends who support her. She’s come so far. There’s nothing more beautiful than that.