When Lois Fink was a Pittsburgh teenager in the 1960s, she knew that something was wrong with her health — she just didn’t know what it was.
Neither did her doctors, who dismissed her complaints of abdominal pains, fevers and “episodes of diarrhea,” recalled Fink in an email.
At the age of 14, and weighing barely 80 pounds, Fink’s parents “begged” her to eat, but to no avail. Her body was not maturing at the same rate as her peers, which caused her much anguish.
“Numerous physicians were consulted, and their diagnosis was the same: ‘no physical basis for the symptoms,”’ she said.
Her mother intimated that if she did not “get a grip” on herself, Fink would end up in a mental hospital, but “at a gut level,” the teenager knew she was “very sick.”
Shortly after her 17th birthday, with symptoms intensifying and her weight dropping to 62 pounds, Fink collapsed one day after school. She woke up the next day at Montefiore Hospital, where a doctor finally diagnosed her as having Crohn’s disease.
“Looking back, I’m not sure how I maintained my conviction that I was sick, when everyone told me I had fabricated my illness,” Fink, who has recently published her story of survival in a book, said. “Even when my own mother didn’t believe me, I listened to the small voice inside that said I was very ill. In spite of everything, I guess
I had a lot of guts.”
Fink left Pittsburgh in 1971, two weeks after graduating from Duquesne University, and moved to Denver, Colo. Finally, after dealing with the difficult symptoms of Crohn’s for more than three decades, she ultimately decided to undergo ostomy surgery at the age of 36, although she was at first reluctant to go through the radical procedure.
“After meeting and talking with a young woman who had gone through ostomy surgery, she gave me an assignment: list everything I was angry about as a result of having Crohn’s disease,” said Fink. “After writing, ‘I’m tired of being an observer of life and not an active participant,’ I stared at what I’d written. Something shifted in that moment and I could no longer deny how narrow and constricted my life had become. I wanted an opportunity to fully live my life. I was still afraid, but I knew I’d made the right decision.”
Having the surgery “gave me back everything Crohn’s disease took away — it gave me back my life,” said Fink. “It has given me the freedom to be spontaneous, to do things I was afraid to do when I had active Crohn’s disease. I am free to go hiking, enjoy a meal at a restaurant without sprinting to the bathroom multiple times, sit through an entire movie.
“I don’t have to know the location of every bathroom wherever I go,” Fink continued. “I’m free to really concentrate and listen to others instead of being ‘gut’ centered and wondering if my body will betray me. As strange as this may sound, ostomy surgery has given me the opportunity to see a part of my anatomy that isn’t usually visible, and marvel at the wonder of the human body itself.”
Since then, Fink has become an advocate for others suffering from Crohn’s by sharing her story. Her book, available on Amazon.com, is called “Courage Takes Guts: Lessons Learned from a Lost Colon.”
She also has addressed medical and nursing students, “demystifying ostomy surgery,” she said.
“I have spoken to certified wound, ostomy, continence nurses and GI nurses, shared my story from the patient point of view, and offered ways nurses can help their patients thrive. Knowing myths and fears about ostomy surgery persist, motivates me to keep speaking and working to bring ostomy surgery out of the bathroom and into the living room.” PJC
Toby Tabachnick can be reached at firstname.lastname@example.org.