Founded in 2005, United Ostomy Associations of America (UOAA) bills itself as “a national network for bowel and urinary diversion support groups.”
In a telephone interview, UOAA co-founder, 75-year-old Ken Aukett, of Westmont, New Jersey, had a lot to say about his late wife, Linda, also a UOAA co-founder. Both Linda and Ken had ulcerative colitis and an ostomy, which is a surgically created opening in the body made to discharge body wastes. There are three types of ostomies: colostomy, urostomy, and ileostomy. Ken has had his ostomy 42 years, and Linda had hers 44 years before passing away two years ago.
Said Aukett of the organization’s founding, “Linda and I recognized there had to be a national organization in order to continue promoting the rights of people with ostomies. Washington would not listen to individuals or manufacturers. That’s the void we filled. Also, there were a number of ostomy support groups throughout the country that would have folded without a national organization.”
One example of Linda’s work in Washington, D.C., involved educating the TSA and members of Congress regarding ostomy patients going through airport security.
“The direct result of her (advocacy) was that people with ostomies no longer have to go into a back room and undress and have their pouches removed,” said Aukett. “Linda explained what an ostomy involved. Before that, TSA officers were doing body pat downs and (accidentally) tearing the ostomies off some people.”
Aukett said his wife was a “true humanitarian,” who was dedicated to helping others, an excellent communicator, and an effective advocate in Washington. Linda and Ken Aukett, former social worker and facilities engineer, respectively, began volunteering for ostomy groups in the 1970s. He and his wife traveled around the world to educate people about ostomies.
Aukett said much of their work over the years involved letting people with ostomies know they didn’t have to be reclusive, but could enjoy a quality of life doing nearly everything they could before disease prompted their surgery. He said one friend of his with an ostomy had climbed the tallest mountain on every continent, including Mt. Everest.
Aukett said, “In terms of encouragement, I’d tell your readers (with ostomies) that there’s nothing you can’t do. You’re not limited. The only limiting factor for your quality of life is your own perception of what you have.”
In his spare time, Aukett enjoys swimming and snorkling.