By Lois Fink
“You have Crohn’s disease.” Those paralyzing words are as clear today as they were forty-eight years ago. I was seventeen, sick, and no one was listening. Instead, the severe diarrhea, alarming weight loss, crippling abdominal pain, fevers, and arrested physical development were ignored. A sigmoidoscopy performed by a dismissive gastroenterologist announced I was “nervous.” My mother urged me to “get a grip on myself… nothing is physically wrong.” The voice in my gut rebelled. Something is wrong.
Excruciating abdominal pain were later diagnosed as appendicitis, and I was rushed to the hospital for an emergency appendectomy. Accepting the diagnosis, weighing 62 pounds, not being able to return to school due to my fragile health, and adjusting to a restrictive diet proved difficult. Steroids distorted my face.
Six months later a bowel resection became necessary.
The night before surgery coincided with my high school prom, and my mother expressed sorrow at my missing this event. I resisted saying, “I don’t have the boobs to hold up the dress!” After surgery, I gained weight and my stunted physical development rebounded. A year later a major flare occurred, college courses were curtailed, restricted food, and steroid therapy resumed.
Over the next nineteen years, my remaining colon and rectum were assaulted. Knowing the exact location of a bathroom wherever I went was crucial. I carried spare underwear because humiliating bowel incontinence was a daily occurrence. Siting through a movie or restaurant wasn’t possible without running to the restroom. My world narrowed until the only place I felt secure was my bathroom.
At age 34 ostomy surgery was recommended and I recoiled in horror.
To me it meant being mutilated. Bolting from the doctor’s office, I spent two years in denial until I realized watching people’s feet go by from a bathroom stall was not living.
A total proctocolectomy and permanent ileostomy resulted in the removal of the diseased colon and rectum; the inch of small intestine brought through the abdominal wall created a stoma. For the first time in nineteen years I experienced a life free of pain. No longer did I have to worry about finding a bathroom, or my body betraying me.
Crohn’s disease and ostomy surgery have taken me down paths I never would have traveled.
They allowed me to discover talents I didn’t know I possessed, introduced me to amazing individuals who made a lasting impression on my life. Refusal to take no for an answer from the producers at the Sally Jesse Raphael show resulted in a frank discussion about Crohn’s disease, ulcerative colitis and ostomy surgery on national television!
I’ve shared my story with medical and nursing students and practicing nurses. Working with my state representative and testifying before legislative committees, afforded me the opportunity to understand the process by which a bill becomes law.
In the middle of a crisis it is difficult to ask what benefits this situation might ultimately bring us, what gifts we might receive if we are willing to see the incident in a different light. When we change how we view our situation, our life automatically changes. We can learn to be grateful.
I no longer resent Crohn’s disease or miss my colon and rectum.
I’m grateful for the lessons and gratitude. The gifts I’ve gained far outweigh their loss. You can live life to the fullest without a colon and rectum. And I’ll never have to go through a colonoscopy again!
This article originally appeared in the April, 2014 edition of Companion Magazine for IBD