Alice Ambrose’s First 20 Years With Bladder Exstrophy

by Allison

Alice Ambrose is a role model and peer supporter for the ABC community nationwide.

Editor’s Note: Bladder exstrophy is a rare congenital birth defect that causes part of the bladder to be present outside of the body. Treatment includes surgical correction, but often leaves the patient with long term urological issues.

Alice Ambrose was born with bladder exstrophy and was left with an ostomy. She hid this from her peers for 20 years, but eventually told everyone after reconstructive surgery and an extended hospital stay. Alice has learned to be brave and honest when it comes to her condition and sets a great example about living a positive life. Part 1 of a 5 part series.

I was born in Seattle, Washington with bladder exstrophy. I grew up in Bellevue, a suburb of Seattle and had a very happy childhood. My mom and dad were loving, supportive and made sure I lived a normal life. I participated in the same activities as other kids and never felt singled out.

Since I’d never known life without bladder exstrophy, I didn’t feel different, despite the fact that I had worn an ostomy since I was 2. When I started going to sleepovers and pool parties in elementary school, I realized that my friends didn’t have an ostomy like I did.

At the time, I wasn’t old enough to change my ostomy bag, but as I got older, I learned to take care of it myself so I could enjoy more extracurricular activities without worrying. My mother helped me find pajamas that hid my ostomy and sewed me a swimsuit with panels so that I could swim and enjoy pool parties.

Alice hid her condition from her peers for 20 years.

I had to deal with several issues during school like a leaky bag or not participating in gym class because I was embarrassed to shower in front of my peers. None of my friends or the other students I went to school with knew about my condition. I never wanted my ostomy to slow me down or prevent me from doing what my friends were doing.

However, when I was 20, I underwent reconstructive surgery. I hadn’t had surgery since I was 4. Once I finally told my friends about my condition, I had a difficult time because I’d never had to face the fact that I was different. I still struggle with this realization.Explaining bladder exstrophy is a challenge, but I was ecstatic when my friends offered support and didn’t treat me any differently.

I did have an issue with a past boyfriend who didn’t know about my condition. When I told him, and mentioned that bladder exstrophy may prohibit me from having children, it changed our relationship. I realized that he wasn’t worth it because it’s important to be with someone who will accept me for who I am. 

My dad always shares inspirational quotes and thoughts with me. One of my favorites is, “Successful people search for challenging opportunities to change, grow, innovate and improve.” (author unknown).

Another is “Attitude:

The longer I live, the more I realize the impact of attitude on life. Attitude is more important than facts, than the past, than education, than money, than circumstances, than failures, than successes or than what other people think or say or do. Attitude is more important than appearance, giftedness or skills and will make or break a company. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our pasts, the fact that people will act in a certain way or the inevitable The only thing we can do is play on the one string we have, and that is our attitude.  Life is 10% what happens to you, and 90% how you react to it. We are in charge of our attitudes.”

Editor’s Note: Because Alice understands the challenges that children face with their peers when they have bladder exstrophy, Alice remains involved in a national association called the Association for the Bladder Exstrophy Community. As part of this organization, Alice helps offer summer camps for the families and children who belong to ABC.  Here’s a video from one of last year’s summer camps:

Next: Alice Ambrose Says Life Is All About Being Grateful For What You Have

About the Author: For the last 12 years, John E. Phillips of Vestavia, Alabama, has been a professional blogger for major companies, corporations and tourism associations throughout the nation. During his 24 years as Outdoor Editor for “The Birmingham Post-Herald” newspaper, he published more than 7,000 newspaper columns and sold more than 100,000 of his photos to newspapers, magazines and internet sites. He also hosted a radio show that was syndicated at 27 radio stations; created, wrote and sold a syndicated newspaper column that ran in 38 newspapers for more than a decade; and wrote and sold more than 30 books. Learn more at

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