“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.
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.[CONTINUE READING]