Humor Helps Patient Living With Ostomies

If you talk with Cyrie Nichole (Nikki) Jackson about her cancer surgery, chances are you'll hear her mention "Innie" and "Newman." That's how Jackson refers to the ostomy devices she has worn for the last three years.

"Innie" is her name for a surgically constructed pouch created underneath her skin that collects urine. The urine is removed via a tube through an opening in the abdominal wall. "Newman" is an external bag that collects stools from the intestines through an opening in the abdomen.

"I call my urostomy 'Innie' because it's inside me," Jackson explains. As for "Newman": "My husband and I are big Seinfeld fans. The Newman character is really unpleasant, and so is my colostomy."

Every patient approaches ostomy issues differently. For Jackson, personalizing her ostomy devices has added humor to her situation. That has made it easier to deal with self-care issues that now are a permanent part of her world.

Long, tough road challenges patient

It all began in 2000 when Jackson was diagnosed with cervical cancer. She underwent a radical hysterectomy at a Houston hospital, followed by chemotherapy and radiation. A biopsy one year later revealed a malignant cell remaining from the cervical tumor. Jackson had surgery in 2002 at M. D. Anderson to remove the malignancy.

"The tumor was so close to my bladder that the doctors had to remove the bladder. They also took out my vagina, the colon and part of the rectum. They used part of the undamaged intestine to make the urostomy pouch," she explains.

After two days in intensive care and two weeks in the hospital, Jackson returned home. She was rushed back within 24 hours due to a build up of pelvic fluid and remained at M. D. Anderson another 2 weeks.

Life with ostomies is an adjustment

"I was not prepared for the emotional depression I felt," she says. After returning home, Jackson not only had to learn about her new ostomy devices, but also had to drain pelvic fluid by inserting a needle in her buttocks every day for two weeks.

"My husband became my caregiver. He drained and measured the pelvic fluid, and helped me change the ostomy bags because I was so afraid and nervous about doing it." Seeing what came out of her body only added to her depression.

The first year was really difficult for Jackson. "Not only had I just gotten rid of a terrible disease, but I also felt disfigured. I hated changing the bags, and I felt like I had no control over my body. And I was afraid to use public restrooms," she says.

Time heals all things and minimizes fears

Jackson also discovered she was allergic to the adhesive tape on a part that attaches the ostomy pouch to the skin. Many patients wait up to seven days to change the part, Jackson must change hers every three to four days.

Time and patience have made a difference: "Now I can stand in front of a mirror, change Newman and say things like 'Let's just pick up where we left off.' I also bought some opaque bags, and that has helped."

And she's comfortable using public restrooms. She takes a spray bottle and deodorizer with her to clean the bags before she disposes of them.

Jackson has received much support from her wound, ostomy and continence (WOC) nurse at M. D. Anderson, Cynthia Worley, who she still calls with questions. "I'm also seeing a psychotherapist and a psychiatrist, which has really helped," she says. "My husband Jimmy has been there every step of the way, when I need his help in calming me down or changing my bag."

Acceptance gives way to service

Now at greater peace with her new life, Jackson counsels other patients. "I'll meet them at a hospital or at a restaurant, go into the restroom and give them the tour," she says. "I literally pull down my pants and show them my ostomy bags."

Jackson gives patients her telephone number, along with website resources and information on various types of ostomy supplies. "I try to help patients confront their fears," she says. "I tell them everything they're going through is normal and they shouldn't be afraid of their bodies."

Although the litany of health problems she has experienced sometimes leaves her tired, especially at the end of a busy day, Jackson has learned to enjoy life - ostomies and all. "I went on a cruise last year, and I bought a special cover for Innie and one day I took an impromptu swim in the ocean wearing a pair of shorts that covered Newman. That was a huge step for me. Newman and Innie are part of me now."