I’ve noticed that people love to brag to me about certain things," says Dr. Gordon Brock, a family physician in Temiscaming, Ont., who lectures at Montreal’s McGill University. "People love to brag to me about their migraines or their slipped disc and how they had a heart attack and everybody thought they were gone, and boy, did they ever pull through and surprise everybody.

"But, when I sit the patient down and ask what brought them here, believe me, no one has ever said, ‘Because I’m incontinent.’ Sometimes after a long relationship, the patient will actually volunteer it to me, but more often the subject is brought up by a relative who whispers it into my ear, or else the incontinence provokes a crisis – such as the proverbial last straw that leads to caregiver burnout, a need to place the patient (in a long-term care facility): ‘We simply can’t take care of them any longer.’"

Dr. Dianne Heritz is staff urologist at St. Catharines General and Hotel Dieu hospitals in St. Catharines, Ont. She describes urinary incontinence (UI) as "an episode where one loses control of the urine." The degree of incontinence can vary greatly, she says: Some peoe may experience little more than "a few dribbles here and there – women, for example, after having had a child, or when they’ve been through menopause – and maybe they just tuck a bit of toilet paper in their underwear, or they buy pads. They’ve adapted."

But, while the incontinence may be just an isolated occurrence, "for some people," Heritz says, "one episode can be devastating because it might happen in front of friends. It might happen on the golf course or when somebody is in front of a classroom of children."

Despite its potential impact on a person’s life – even though it may be affecting, even controlling every aspect of their lives – UI is the last taboo. There’s still a stigma attached to loss of control of bodily excretions that keeps people silent. We talk about cancer, AIDS, breast implants, even death, but most of us have a lot of trouble talking about incontinence. Cheryle B. Gartley provided some insight in her 1985 book, Managing Incontinence. In it, she reported on the results of a questionnaire given to a group of British women. Nearly all spoke of shame and embarrassment because of their incontinence; their answers also revealed a terrible toll on their emotional equilibrium and self-esteem – and their lives. Variously, the women suffered "depression, irritability, anxiety, worry, frustration and anger in response to their incontinence. Others reported feeling constantly toilet-centred in their thoughts and activities.

Every aspect of life is affected, the women said; everything changes, and everything suffers: Physical activities are drastically curtailed; social life is inhibited or eliminated; relationships flounder; marriages are strained; jobs may be lost – and life is reduced to managing the condition. Or being managed by it. As Gartley says, "incontinence governs your whole life."

Autumn Trumble, a nurse who created and operates the incontinence clinic at St. Joseph’s Health Centre in Toronto, has heard it all, countless times – from people in strained relationships, from people afraid to go out with friends and family, from people afraid to visit other peoples’ homes – not to mention going further afield.

"Think of getting on a plane. What’s the first thing they tell you? ‘We’re going up. You can’t get out of your seat…’ ‘We’re hitting turbulence. You can’t get up and go to the bathroom…’ That can be a great barrier.

"It can even affect things we take for granted, such as what we wear. Countless people say, `I can’t wear colours anymore. Everything I buy is black, brown or navy blue, because they won’t show a stain.’ Or, ‘I can’t wear a dress anymore. I don’t feel comfortable in a dress with those pads.’"

Anyone, at any age, of either sex, can be affected by urinary incontinence, though it affects women far more often than men (up to eight times more often until age 70, when the numbers begin to even out), older people more often than younger. Age and sex, in fact, are two of the key risk factors associated with incontinence (women who’ve had a number of big babies or difficult deliveries, and women going through menopause who are estrogen-deficient, are both at risk for UI).

Other risk factors: radical prostate surgery; prior surgery in the pelvic floor area; obesity (weight loss alone is sometimes enough to restore continence in someone with no other complications); stroke; certain chronic illnesses, such as Parkinson’s, multiple sclerosis and diabetes; and certain medications, particularly among the elderly, whose weaker metabolisms put them at greater risk of drug interactions.

From various research studies, it’s known that 12 to 16 per cent of people over 64 experience incontinence; over 84, the number’s close to 25 per cent; and, in long-term care settings, the number is between 37 to 62 per cent of residents. Overall, about 20 per cent of the aging population in Canada – one out of five people over 64 – experience incontinence.

Costs are difficult to pin down, but various studies indicate that each incontinent person living in the community spends $1,000-$1,500 a year on disposable incontinence products, while the cost of care related to incontinence can be from $3,000-$10,000 a year per person in a long-term care setting.

Perhaps the most disturbing aspect of UI, though, is that about 50 per cent of those suffering from the condition have never done anything about it, never even mentioned it to anyone. That was confirmed by a 1997 Pharmascience/Angus Reid poll and corroborated by numerous other studies. "And why is that?" asks nurse Trumble. Sometimes, yes, it’s shame and embarrassment, but there are also a lot of misconceptions that silence people: "One, that incontinence is an inevitable part of aging, and therefore ‘I can just expect it.’ ‘It’s not treatable unless you have surgery.’ Or, ‘it’s best dealt with by pads.’

"The reality is, urinary incontinence is a legitimate health concern," Trumble says. "It’s not inevitable, it’s in no way normal, and it is treatable. In Part II of our coverage of incontinence, in the October issue of CARPNews, we’ll look at some of the treatment options available; we’ll talk to the experts about surgery, medications, exercise and some of the other treatment that can make a difference – in some cases even "cure" the condition.

In the meantime, if you want to know more, contact the Canadian Continence Foundation toll free at 1-800-265-9575. Its mission is to enhance the quality of life of incontinent people by helping them and/or their caregivers to access cures and treatment options. The foundation implements and encourages public and professional education, support, advocacy and research to advance incontinence treatment and management. The CCF also provides a list of health professionals across the country who deal with incontinence.