By Debra Anscombe Wood, RN
The surgery to create an ostomy can be lifesaving, but even so, it oftentimes presents difficult challenges for patients coping with alterations to their body image and with managing the logistics of an ostomy. Recognizing patients need encouragement and information, two nurses at the Regional Wound Care and Hyperbaric Medicine Center at Bayonet Point in Hudson, Fla., began a monthly ostomy support group.
“It goes hand in hand with having a clinic here,” said Billie Jo Bennett, RN, CWCA, OMS, a wound and ostomy nurse at the center.
“The support gives them more information than they got before surgery or after,” said Karen Halloran, BSN, RN, CWOCN, CFCN, clinical manager of the center. Both nurses had facilitated support groups when they worked in different facilities. Bennett recently left another position in Florida and expects many of the support group members will follow her to Bayonet Point.
More than 1 million Americans live with an ostomy and every year about 130,000 people join their ranks, according to the United Ostomy Associations of America, Inc., a volunteer-managed nonprofit organization. The association has links to local and online support groups for ostomates.
People may need an ostomy to treat cancer, diverticulitis, ulcerative colitis or Crohn’s disease. Ostomies also may be created for urinary diversion. Many ostomies result from emergency surgeries, and some can be reversed, Halloran said.
“We want to be helpful to ostomy patients, because [the information they need] is very specialized,” Bennett said. “Sometimes they just need a little extra help, and it makes a world of difference.”
Patients and their caregivers are welcome at the support group. Many people with ostomies rely on others to care for them, the nurses said. The support group helps patients become more independent.
“Sometimes, people need to know there are others out there [with ostomies],” Bennett said. “They need to be introduced to other people.”
Bennett lines up speakers in response to participants’ suggestions. Early meetings have focused on supplies, diet and other management information. The nurses strive to make patients self-sufficient in their ostomy care.
“The support group is about them and their needs,” Bennett said. “Some have leakage issues or odor issues and questions about sex and life after an ostomy. Pretty much, they can do anything after recovery from the surgery. They need a boost of self-confidence back.”
Some ostomates are afraid to leave the house. The support group helps them move past that fear. People with ostomies can swim, play tennis, travel, and live full and productive lives, Halloran said.
“We want [them] to live a normal life,” Bennett said. “[They] should be independent and do what [they] want to do.”
Typically about six to 10 people attend each session. One of the benefits of a support group is people sharing information with each other. Long-term ostomates tell others about what has worked for them. People can change from one product to another without a physician order.
The support group meets after hours at the clinic.
“People are grateful for the help,” Bennett said.
Often, with just a little advice in a more informal setting than the physician’s office, people will open up about issues with their ostomy and learn ways to better care for it to enjoy fuller lives.
“Support groups are needed,” Halloran said. “And they are needed everywhere, not just here.”
Debra Anscombe Wood, RN, is a freelance writer.
Sidebar: Nurses share tips for setting up support group
The Bayonet Point nurses spent a couple of months in planning for the ostomy support group. They offered the following tips for setting up a support group:
• Obtain management, surgeon and hospital support.
• Secure extra ostomy [or other specialty] supplies.
• Be consistent about the day and time the group meets.
• Spread information about the group by word of mouth.
• Inform nurses, surgeons and discharge planners about the group so they can tell patients too. •
— Debra Anscombe Wood, RN