Miami ostomy group helps patients adjust to their new lifestyles

Five years ago, retired Miami attorney Hal Spaet learned he had bladder cancer. Surgeons removed his bladder and performed a urostomy to eliminate urine.

Still dazed from anesthesia, Spaet was not able to concentrate and fully comprehend at the same time the overwhelming information and instructions needed to care for his new ostomy, a surgically created opening in the abdomen that allows the body’s waste to be diverted out of the body from the gastrointestinal or urinary tracts into an external disposable pouching system.

“The doctors explained it to me before the operation,” Spaet said. “They told me about the appliances I’d have to wear and why. It was very difficult to understand until I had the operation and went home from the hospital. There was an ostomy nurse who gave me a little bag with samples and he explained them to me, but in that brief time was unable to tell me how to use them. I had no idea what to do.”

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Ana M. Restrepo, is a registered nurse and Inpatient Wound Care and Ostomy Coordinator for University of Miami Hospital & Clinics at UHealth Tower.

Photo provided to the Miami Herald

Spaet’s story is not unique. Ostomy patients must learn how to provide self-care in maintaining their pouching systems and all the potential issues resulting from their surgeries, both directly and indirectly.

“I just ask that you live the mission of UOAA in your daily lives and continue to raise ostomy awareness, advocacy and education in your community,” wrote Susan Burns, president of the United Ostomy Association of America, in a February web post. “More work needs to be done to fulfill our vision of a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically and psychologically.”

An ostomate’s new life is profoundly affected resulting in medical, lifestyle, social, and psychological issues that begin right after surgery.

There is a growing need for ostomy care. There are now approximately one million people in the U.S. with ostomies. An estimated 120,000 to 150,000 new ostomy surgeries are performed each year. Many of these surgeries are permanent.

While cancer is the primary cause of patients needing an ostomy, there are other reasons also ranging from digestive and elimination tract illness (including inflamatory bowel diseases) to automobile accidents and gun-shot wounds.

A national survey of patients found 49 percent said the information and instruction they received after ostomy surgery was inadequate.

Spaet, now 74, said that after his surgery, nurses who cared for him did not have the specialized training and knowledge needed to care for a his new ostomy nor to meet his medical, lifestyle, and psychological needs.

“We decided to do the bladder removal in a preventive way to best assure us that the cancer cells would be gone,” Spaet said. “I’ve been fortunate. I go every six months to the surgeon for MRI tests.”

After surgery, Spaet sought out a nurse who could help him adjust to his new ostomy. “It was clear to me that there weren’t many ostomy nurses who could teach patients how to put on their appliance, keep the wound sterile and alter their daily lifestyles. It was surprising to me how few hospitals did no aftercare for patients.”

In October 2016, Spaet founded the nonprofit Miami Ostomy Aftercare program. He serves as president.

Miami Ostomy Aftercare offers multiple programs with the goal of “providing a smooth transition back to a healthy, happy life overcoming negative and overwhelming feelings with useful information and guidance.”

Ostomy support group that meets at 6:30 p.m. on the fourth Tuesday of each month at the University of Miami Hospital and Clinic’s UHealth Tower. Speakers have included surgeons, psychologists, physical therapists, ostomy supply providers, nurses and patients. he meetings are open to the public, free for patients, their caregivers, and medical professionals. The next meeting will be 6:30 to 8 p.m. Feb. 26 at UHealth Tower, 1400 NW 12 Ave., Lobby Level.

Ostomates and caregivers are encouraged to join in discussions on their ostomy problems and daily lifestyle issues and share their personal solutions.

A free telephone help line, 305-952-0951, available for patients, caregivers and medical professionals. Questions are answered by a trained ostomy nurse with over 30 years’ experience.

A website, miamiostomyaftercare.org, which provides curated information with current and patient-friendly ostomy content available on the web, including tutorial videos, articles, research and reference material.

I joined the Miami Ostomy Aftercare board in February 2017 and I am currently vice president. The group gives me the opportunity to assist ostomates to transition to a higher quality of living through education and empowerment to achieve a fulfilled life with their ostomies.

When I joined the University of Miami Hospital as a certified wound ostomy nurse in January 2016, my dream was to establish an outpatient ostomy clinic. As a wound ostomy care nurse, I witness daily the benefits of properly training patients and providing them with the resources necessary for them to transition to their new lifestyle.

In November 2017, we opened the doors of the outpatient ostomy clinic at University of Miami Hospital and Clinic’s UHealth Tower, and we are fortunate to educate our patients about ostomy prior to surgery, in addition to following up after they are discharged.

Most hospitals do not have outpatient ostomy clinics, making new ostomates dependent on home healthcare services — where trained personnel are critically lacking. Miami Ostomy Aftercare provides these patients with opportunities through our support group and telephone helpline for direct assistance, and by training healthcare professionals in ostomy care to better treat patients at home upon discharge.

Ana M. Restrepo, is a registered nurse with a Bachelor of Science degree in Nursing from the University of Miami, where she graduated in 2000 cum laude. She received her wound care certification from the Medical University of South Carolina in 2008, and her ostomy certification from Emory University in 2016. She is the Inpatient Wound Care and Ostomy Coordinator for University of Miami Hospital & Clinics at UHealth Tower.

To learn more

For more information, contact Miami Ostomy Aftercare at 786-580-3928.