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Having ileostomy surgery 30 years ago gave me back everything Crohn’s disease took away

Courage takes guts.
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“You have Crohn’s disease.” Those words seemed to ricochet off the sterile hospital room walls, and they’re as clear today as they were in 1966. I was 17, sick, and no one was listening. For over two years, numerous doctors had dismissed my severe diarrhea, alarming weight loss, crippling abdominal pain, and halted physical development as “nervousness.”

I never found a doctor who truly believed me, but at least I finally received a diagnosis after a discovery was made while having major surgery. Though frightened and scared, I forced myself to listen as the doctor explained Crohn’s disease; a chronic, inflammatory bowel disease (IBD) of the gastrointestinal tract with no known cure. I spent three weeks in the hospital, struggling to come to terms with the diagnosis and undergoing humiliating tests. My fragile physical health prevented me from returning to school. Along with a restrictive diet and the side effects of steroids distorting my face and body, my sense of isolation grew, eventually becoming more than I could handle.

“Why me?” I angrily shouted at my father.

“Perhaps later in life,” he quietly said, “you will meet someone, and because of what you are going through now, you will know what to say and how to help.”

It would be years before I realized the power of my father’s words.

I struggled with Crohn’s disease for 19 years as it relentlessly spread through my colon and rectum. Bowel incontinence became a daily part of life; knowing the location of a bathroom wherever I went was crucial. I used to joke about arm wrestling an elderly woman for a vacant bathroom stall, but my sense of humor barely concealed my humiliation and my fear of having an accident in front of friends or strangers. Over the years, the bathroom became both my refuge and my prison.

The first time my doctor brought up ileostomy surgery, I was horrified. This was the surgery I had been terrified of since my diagnosis: the removal of my colon and rectum, with the bowel contents rerouted through a stoma and collected in a small pouch on my abdomen. Doctors had assured me that ostomy surgery wouldn’t be necessary, and now I felt betrayed by the medical profession. Denial about my health lasted another two years until I realized I was merely an observer of life and not an active participant.

With my doctor’s help – and two vibrant, healthy women who had gone through ostomy surgery the year before – I realized that the myths and fears about this life-saving surgical procedure were not true. I said goodbye to my colon in the summer of 1986, when I was 36-years-old. Yet even though there were around one million Americans living with an ostomy, there was little public mention about IBD or ostomy surgery in the media. I wanted that to change.

In 1989, I convinced a reluctant TV producer to discuss what he initially thought was a taboo subject. My persistence prevailed, and that summer I appeared on the Sally Jessy Raphael Show talking about how ostomy surgery changed my life. Several years later, I was again inspired to promote more awareness when I met Allyson Bain, a young woman with IBD who’d been denied access to a retail store bathroom. She channeled her negative experience into creating The Restroom Access Act, also known as Ally's Law; legislation passed by several U.S. states requiring retail establishments who have restrooms for employees to also allow customers use of their facilities if the customer has an inflammatory bowel disease or other medical condition requiring immediate access to a toilet. That led me to accomplish the same regulations for Washington state in 2009. I testified before the House and Senate committees along with Mike McCready, the lead guitarist for Pearl Jam, who has lived with IBD for the past 32 years.

January 9, 2009: Mike McCready and I talking to reporters.

January 9, 2009: Mike McCready and I talking to reporters.

Urged on by my doctor, I began speaking to medical students and nursing students in Seattle as a patient advocate. These same students encouraged me to write a book, so I did, called Courage Takes Guts, Lessons Learned From A Lost Colon. It’s been 30 years since having ostomy surgery and I wouldn’t change a thing. Ostomy surgery gave me back everything Crohn’s disease took away — my life, along with incredible freedom. No longer do I carry spare underwear or need to know where a bathroom is. I can enjoy a movie or a meal without running to the toilet. I can give someone my full attention because I’m not worried my body will betray me. I’m no longer defined by or limited by Crohn’s disease. Today, I’m a strong, courageous, self-confident woman who is embracing life and grateful for the lessons I’ve learned.