Suzie Siegel

Former Newspaper Editor Suzie Siegel Shares the Funny Side of Her Urostomy  

For Suzie Siegel, a Great Comeback is a funny response, despite her serious medical problems.

"Humor helps me cope," she says.

In 2002, at age 43, she was diagnosed with leiomyosarcoma, a rare cancer. Surgery and radiation damaged her bladder. She couldn’t urinate even though her "surgeon stood outside the bathroom, making swish-swish-swish sounds." She learned to catheterize herself "with one hand, in the dark, while talking on the phone."

Suzie pondered her once-shy bladder during a urodynamics test in which a nurse put a catheter up her urethra, a balloon and another catheter in her rectum, and an electrode on her perineum.

"It was like being abducted by aliens."

She regained some ability to urinate, but after a few years, she grew incontinent, and she started suffering urinary-tract infections resistant to antibiotics. She got second and third opinions. She even asked a tarot-card reader, who assured her that she would have less pain and inconvenience if she had her bladder removed. The card-reader turned out to be a retired nurse.

In 2010, Suzie opted for an ileal conduit, which allows urine to be drained out through a stoma. This wouldn’t cure all her medical problems -- her cancer is considered incurable. Twice, the cancer has spread to her right lung. She had a year of chemotherapy and later, lung surgery. But she hoped a urostomy would improve her quality of life. When asked if it did, she wrote:

"I can go on vacations and see more than restrooms. I can sit through a long movie, sipping a 24-oz. drink, letting my bag warm my lap, without dashing out in the middle, as if I were competing in an Olympic event. I hope I’ll never again keep a plane from taking off because I went to the restroom, while the pilot chastises me over the intercom. I can save money because I no longer rush into stores, yelling, ‘I’ll buy anything if you let me use your restroom!’"

"I’ve gone down a size in pants now that I no longer wear diapers. In the middle of the night, I’m less likely to have to change my sheets, take a shower and wash off my Chihuahua.

"It’s easier to see the color of my urine (Is it an ale or lager?) without so much blood in it. Because I don’t have to take an antibiotic daily, I can stay out in the sun, and I no longer look like a middle-aged vampire."

Suzie has had few problems with her urostomy, other than the flight in which she fell asleep and woke up drenched in urine, or the time she forgot the plastic piece that connects her appliance to a night bag and had to have it sent overnight to her in Yosemite National Park.

"I never use ‘appliance’ because it sounds like I’ve got a toaster stuck to my stomach."

Four months after her surgery, she began to have partial obstructions of her small intestines, accompanied by severe abdominal pain and vomiting with the force of a fire hose. Once she spent five hours in an emergency room until the cancer center gave her permission to move across the street to its lobby, where she rested for 2½ hours before a bed opened upstairs. Because of dehydration, it took a few more hours before anyone could start an IV.

She was put on a low-residue diet, with no fresh fruit or vegetables - what she calls "The American Diet." She had to seek emergency care 12 times before imaging studies identified the stricture. By then, she could take fluids and nutrition only by IV. She had surgery in June 2011 to remove adhesions. She had been marked for a colostomy, but the surgeons decided it wasn’t necessary.

A former newspaper reporter and editor of the Tampa Tribune, Suzie provides peer-to-peer support for the M.D. Anderson Network and the Sarcoma Alliance, which she also serves as a board member. She also attends medical conferences as an advocate for sarcoma patients.

"Why would I have procedures to save my life if I didn’t enjoy it?"