How shall I put this delicately? When we speak about the work of our gastrointestinal tract, which we rarely do, we use euphemisms. Nevertheless, I will plunge into precarious territory by being frank: I never had a friendly relationship with the toilet.
From early childhood, my stool looked like hard pebbles. I was chronically constipated and my mother insisted I sit until my bowels moved. I felt trapped. Suppositories and enemas were administered frequently throughout my youth. I felt humiliated and utterly stripped of power over my body.
I felt similarly out of control when I was diagnosed with ulcerative colitis at 16. In my 20s, the symptoms intensified. I experienced severe stomach cramps coupled with a frequent urgency to evacuate. My red blood count plummeted due to rectal bleeding and I lost 20 pounds in a month. I struggled to work as a newspaper reporter. I never talked about any of this to anyone.
When I became too sick to function, I took a leave of absence from work and returned to my parents’ home to rest. At the time, ulcerative colitis and Crohn’s disease were not yet understood as autoimmune disorders. So without any information, my mother was convinced I could banish the disease if only I ate better. She also observed that if I cared more about other people and less about myself, this wouldn’t be happening to me. I got the message: My disease was caused by my inadequacy. I felt utterly desolate and alone.
After years of constant irritation, my colon was removed in 2000 because of precancerous cells found in the same place three years in a row. I now function happily with an internal “J pouch,” fashioned from the end of my small intestine, which substitutes for my colon.
The surgery transformed my life. Without my colon, I was suddenly completely healthy. True, my stools are liquid, but after a lifetime of constipation, I’m fine with that. I know I am fortunate. There are those who undergo J-pouch surgery and then live with continued discomfort from an inflamed pouch. I have escaped that post-surgical misery.
I am now surrounded by loved ones. I live with my husband and two sons, along with three stepchildren and twin step-granddaughters. I exercise, stay in shape, eat and drink anything and take no medication. My life is full.
Still, the scars from my illness and from those years of loneliness and isolation remain just under the surface.
To pay homage to that time and to transform my experience, I decided, more than a decade after my surgery, to write a book based on interviews with people who were diagnosed before age 30. It will detail the various ways young people cope with school, diet and alcohol; toilet issues such as urgency; parents, siblings, work, dating and intimacy, and other aspects — including the upsides — of inflammatory bowel disease. I am also speaking with parents, siblings, spouses and significant others to discover how Crohn’s and ulcerative colitis have affected their lives. My hope is that people with IBD and those who love them will gain insights into how people deal with their disease and, as a result, feel less confused and isolated.
Linda Kriger is a freelance writer in Philadelphia and a former reporter for the Philadelphia Inquirer. She is interviewing people 30 and under for a book about the emotional side of IBD. Contact her at firstname.lastname@example.org