Ostomy group members share coping strategies
Many used to be afraid to leave home because of their condition.
By BETH N. GRAY
Published March 23, 2007
It's not an easy topic to talk about. But together, members of the Hernando County Ostomy Association can lean on and learn from each other.
At their monthly gatherings, members and guests hear from experts and they also share their stories of worry - and success.
"These are conversations a lot of people don't want to have," says group president Nancy Backinger.
What all group members have in common is an ostomy.
"Basically, an ostomy is a manmade exit site that changes the point of exit from the bottom or back of our body to the front," writes Rosemary VanIgen of the Northern Virginia Ostomy Chapter in an article republished in the local association's newsletter.
The surgery provides for excretion through a hole in the body wall to a pouch outside, usually necessary because of disease or traumatic injury.
"Basically, people that have had the surgery are befuddled and bewildered how to take care of it afterwards," Backinger said recently.
"They come to our group and we try to help them understand what having an ostomy lifestyle is all about. You can do all the things you did before," she tells newcomers.
She says of recent ostomy patients: "They were so down and depressed and figured their life will never be the same. Some of them were afraid to leave the house. We just show them that life goes on. Go back to swimming and golf and tennis."
Backinger, 76, should know. She's carried a stoma for 19 years following a 10-surgery bout with Crohn's disease, a progressive inflammation and eating away of the intestine that left her no option but a diversion.
Today, she is a cheerleader. She tells patients: " 'What would your life be like without the surgery? Well, think about it.' We tell them life will go on. You learn to deal with it and go on."
And Backinger is a shining example. "I swim. I travel," she said. "I don't want to lose it."
In addition to her colostomy, Backinger has a feeding tube. Because of her reduced intestine, she can't absorb food by mouth, although she can eat it. The feeding tube works overnight.
Joan Morris, the association's publicity chairwoman, echoes all of Backinger's concerns - and shares her enthusiasm.
"As a group, we talk about our ostomies. Somebody in the group might be able to help another out: Do it this way, do it that way."
Is it embarrassing? Yes, says Morris, 73. But she says her surgery was a blessing.
She contracted cystitis, an inflammation of the bladder, seven years ago. Treatments and the following urinary diversion were very uncomfortable, necessitating changing her pouch every two to three hours. "It was not pleasant. It gets irritated. It can make you go batty."
But about six months ago she came upon a new product, Coloplast, introduced to a meeting of the association by a speaker representing colostomy products.
"I can now keep it on for a week," Morris says.
And that's part of what the association is all about: informing members of new products and new ways of coping.
The newsletter carries similar reports, plus an inspirational article.
The group has a "sunshine chairperson" who sends greeting cards to members on special occasions and notifies others when a member is going into hospital.
The adviser to the group is a WOC nurse - for Wound, Ostomy, Continence. Linda Ravenhorst is a mentor, and source of information and personal counseling. Also on board is a physician adviser, Dr. Fawzi M. Soliman.
Beth Gray can be contacted at graybethn@earthlink.net.Fast Facts:
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For more information about the Hernando County Ostomy Association, call 352 597-7933.