“We can’t keep taking sections out of your gut and suturing you back together. It’s time to discuss ostomy surgery,” my doctor said. I was 34. My reaction was panic and terror. “No, you aren’t going to mutilate me.”
I had battled Crohn’s disease since my early teens and was finally diagnosed at 17 after being sick for nearly two years. Doctors kept telling my mother I was “just nervous and a good candidate for colitis.” Fevers, intense abdominal pain, delayed growth and development and alarming weight loss from severe diarrhea took their toll. Emergency surgery for appendicitis in my senior year of high school instead revealed Crohn’s disease instead. I weighed 62 pounds.
Ever since my diagnosis, thoughts of “having a colostomy” terrified me. I didn’t understand the surgical procedure, only that it was to be avoided. I continually asked my doctors, “will I ever have a colostomy?” My physicians would not admit ostomy surgery might be in my future, and responded, “No.” Medical management of the disease was no longer an option. I felt betrayed and lied to by the medical profession.
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Crohn’s disease, it seemed, had finally won. It had been tunneling through my colon and rectum for years, relentlessly scaring and narrowing my colon and rectal sphincter muscles until I had no control. I needed to know the exact location of a bathroom wherever I went. I obsessed about finding it in time. Would it be occupied? How would I cope with the psychological trauma of bowel incontinence? How could I conceal it from people around me? The steroid treatment, whose dosage depended on the severity of each flare-up, did little to positively affect the course of the disease. The walls of my world gradually closed in until the only place I felt secure was in my own home, close to my bathroom. The bathroom became my refuge and my prison.
I spent the next two years fighting a battle I could not win. Exhausted from being sick, tired and never weighing much more than 90 pounds, I made the decision to have ostomy surgery.
Secrecy, myths, fear and ignorance surround ostomy surgery, in much the same way mastectomy surgery for women with breast cancer did 40 years ago. Would I like myself afterward? Would my friends feel differently about me if they knew? I didn’t want anyone in my family except my parents to know my decision. As unpredictable as my life had been with Crohn’s disease, I knew what to expect. There was familiarity, and in an odd way, a predictability about how I lived. I didn’t know what my life would be like after ostomy surgery, and I was still terrified of my decision to go ahead with the surgical procedure.
The surgeon explained how he would surgically remove the diseased colon and rectum and bring the end of the small bowel through the abdominal wall, allowing drainage of intestinal waste. Fecal matter would be collected in a small pouching system or “bag” that covered the end of the bowel or stoma, which is usually located on the right lower abdomen just below the belt line.
I was introduced to a young woman who had undergone ileostomy surgery due to Crohn’s disease, and she became my “mentor.” The first time we met, she wore a skintight jumpsuit. I stared in astonishment, wondering where the “bag” was hidden. She also sat through the entire two-hour-plus meeting without using the bathroom. Now that made an impression on me. My “homework” was to list what it was like living with Crohn’s disease, and why I wanted ostomy surgery. I came up with 15 reasons. When I wrote, “I’m tired of being an observer of life and not an active participant,” I knew I was ready.
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The night before surgery, I went into the bathroom, disrobed and stared at myself in the mirror. “Take a good look,” I said out loud. “This is the last time you will see the front part of your abdomen looking like this. Beginning tomorrow, you will have about an inch of your small bowel outside your body, and an ostomy pouching system will be covering the stoma.” The realization of what was going to happen overwhelmed me. Luckily, I had my “why I hate Crohn’s disease list” with me. Reviewing it calmed and centered me.
With my mentor’s support, I was emotionally prepared for the surgery that changed my life for the better. The fear I wouldn’t like myself after ostomy surgery didn’t materialize. I experienced freedom for the first time in 19 years; freedom from having to know the exact location of a bathroom; freedom from bowel incontinence; freedom to walk in the park, watch a movie or enjoy a meal without running to the bathroom; freedom to really listen to someone when they were talking instead of worrying if my body would betray or embarrass me.
That was 29 years ago. Ostomy surgery has given me back everything Crohn’s disease took away — a healthy life. Now, I’ve got “bagging” rights!
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Bagging Rights: How Ostomy Surgery Changed My Life originally appeared on usnews.com
