Body Image and the Ostomate

From Imperfection to Perfection

By Ellyn Mantell

My parents came in two different sizes…my father was extra large and my mother was narrow and slim. While it is not unusual for a daughter to model after her mother, I would say that my modeling was extreme. My mother not only was very weight conscious, she was very rigid and restricting of food and drink, and binging was a big part of her life, and as I found out later, unnamed bulimia. Her daily guidelines for foods to be consumed had a critique that usually ended with “remember, Ellyn,” she would repeat, “a moment to the lips, a lifetime to the hips!”

Blueberries, watermelon, and oranges were on her DO NOT EAT list since they had too much sugar. Meat, potatoes, breads were all annotated with what could just as easily have been a skull and cross bone. So as long as I followed her dictum, I would be narrow and slim like her, or so I thought. The problem was, however, that although I inherited her very narrow and slim upper body, I inherited my father’s larger and rounder lower body. Regardless of how much I tried, I was never to be lithe in my legs and hips. College not only brought the “freshman 15,” it brought anorexia and eventually, bulimia. So I lived with an eating disorder that lasted for years, and the reality of body dysmorphia that plagued me for decades. And now, as an ostomate, I am finally grateful and humbled by my beautiful body…because it is an incredibly resilient organism and I am so proud to own it!

For over two decades my strong little body fought through surgeries, hospitalizations, PICC lines, infections, abscesses and lack of bowel motility. And yet, regardless of my physical state, I would expect it to be thin and attractive, fitting into whatever garment I wanted to wear. I never questioned its strength, its ability to weather weeks in the hospitals or the most grueling of tests and procedures. It was never an issue of can I travel alone to Rochester, Minnesota to the Mayo Clinic by myself and stay for two weeks to have bowel retraining. I just wanted to be certain I could exercise, eat “normally” and not put on weight. Regardless of how many scars I had down and across my abdomen from 23 abdominal surgeries, the goal was to fit into my clothes and like what I saw on the scale. Enduring an enteroclysis study (a wire inserted down the nose to be able to see into the small intestine) I steadily focused on what I would allow myself to eat once I was finished. In retrospect, my expectation of my infirmed body to be perfect was abominable, and I would never, ever support anyone I love put that expectation on their body.

And then four years ago, I had my ileostomy, and suddenly, my now very obedient body gave way to an imperfection I was forced to acknowledge. The first time I saw my reflection in the mirror after the surgery, I was horrified. My high-output bag, which is transparent, was reaching down my short frame to my right mid-thigh. But after the shock of my appliance and pouch, I began to relax and look at the possibility that I could have a new life, free of hospitals, surgeries and worry. I began to see the beauty in my stoma, and named it, as many do. Her name is Lily because my mother, Lillian, gave me my first life, and Lily has given me my second.

No longer striving toward an unrealistic goal, I am no so proud of the ability I have to live and love my life. My little body is strong enough to advocate for others; it is strong enough to lead my support group; it is strong enough to visit those suffering in the hospital, and it is strong enough to start a grassroots movement to open our ostomy center, one of the few in New Jersey! On a personal note, I am strong enough to enjoy my beautiful family, my wonderful circle of friends and celebrate each and every day. And I have learned that perfection may never really have been a possibility for me or others, but imperfection makes me very, very happy!