Overflowing lives

“I’m going to tell my mommy and daddy that you still wear diapers!” It was Rachel Hayes’ nephew, a toddler, who had pushed open the door of the bathroom to discover her in a diaper. He stood in the doorway ready to give her a scold; he himself was trying to move from diapers to the toilet and was shocked to discover his aunt’s secret.

Rachel Hayes (a pseudonym) is a university professor with multiple sclerosis, a disease that often causes urinary incontinence. She wears diapers every day. Patiently, she talked to the boy. “I told him his parents already knew that I wear a diaper and that when I was his age, I learned to use the toilet like a big girl. But a long time later something broke in me.”

The boy was satisfied, but it left Hayes with that uncomfortable feeling of not being a grown-up. “It was a moment,” she says. “Incontinence makes me feel less adult.”

Self-imposed secrecy

Many of us experience urinary incontinence at some time in our lives. Estimates run from 20 to 50 percent of the people not living in institutions. The numbers are much higher for those in nursing homes. It’s common among young adults and ever more common as we age. Yet adult diapers are too often the stuff of jokes instead of serious discussion, and many people suffer silently.

Incontinence has deep effects on our self-image; on our relationships with partners, family and friends; and on the way we conduct and live our lives — even who we are. At its core, incontinence affects not only our relationships with others, but our relationship with our own bodies, plunging us back into childhood anxieties most of us think we left behind when we mastered toilet training.

To avoid embarrassment, many men and women give up favorite activities like running, dancing or going to movies and concerts. Others “pad up” and carry on as normally as possible. Sometimes the challenge is the logistics of incontinence — the diapers and the need to be near a bathroom at all times. It’s having to jump up in the middle of a movie two or three times to go to the bathroom.

But the secrecy, the sudden unexplained exits from a friendly social situation, and the background shame people carry around with them create barriers to intimacy of all kinds. Many people go decades without telling their closest friends or even their own doctor.

In a study of 131 women living in Israel under age 65 who had urinary incontinence, three-quarters delayed seeking help for at least a year and nearly half put off telling their doctor for three years. Doctors estimate that half of men and women who have incontinence never look for medical help, most likely because of embarrassment and the belief that the condition is an inevitable part of aging, childbirth or, in some cases, a neurologic disease like Hayes’ M.S.

Stanford professor of obstetrics and gynecology Bertha Chen, MD, says, “Patients don’t want to feel embarrassed about talking to their doctor and then have the doctor say, ‘There’s nothing I can do for you.’”

Chen, an expert on urinary incontinence who is researching treatments with stem cells, says that 50 to 60 percent of women experience incontinence after giving birth. For many, that’s just a few drops when they laugh; it doesn’t affect them much and they can heal with time and exercise. But others have more severe incontinence that medical care could treat or even cure, says Chen.

By age 65, about 30 percent of men and 55 percent of women experience some degree of incontinence, according to the Centers for Disease Control and Prevention. By age 80, more than half of men and women have incontinence, in about equal proportions. For men and women in the last decades of life, severe incontinence can drastically alter quality of life and contribute to the likelihood of entering a nursing home.

Left out: sex, activities, travel and relationships

Ekene Enemchukwu, MD, an assistant professor of urology at Stanford, says some of her female incontinence patients say they don’t want to be intimate with their spouses because they are afraid they will leak. “And you find the same thing for men with incontinence,” she says.

Enemchukwu says studies report poorer marital relationships and overall quality of life, libido and sexual satisfaction in women with incontinence. “Embarrassment and shame are common themes,” she says.

The mechanics of men’s incontinence sometimes differs from women’s. But the overlap in both symptoms and causes is huge and the resulting effects on self-image don’t differ much, say doctors.

Incontinence can have profound effects on sexual relationships. But many partners who communicate well can overcome those embarrassing moments. Dealing with the outside world can, in many ways, be much more complicated.

Rachel Hayes’ incontinence began about two years after her initial M.S. diagnosis 17 years ago. At first it was a minor annoyance, but as the disease continued to damage her nerves, her incontinence has become more frequent. “Now I don’t leave the house without being fully padded at all times, so it’s less of a moment-by-moment social problem,” she says. But she still has occasional accidents. A large amount of urine means changing her pads and finding a discreet place to dispose of an adult-sized diaper. “I always have this anxiety, which doesn’t add to my social charm.”

Some situations are just inherently problematic. “The way the bladder muscles work, if I’m sitting listening to a lecture at the university, I’m fine. But as soon as the lecture is over and everybody stands up, I have to split for the bathroom.” It’s socially awkward, she says, to be the one who never hangs around to talk with other faculty.

 “There are things I avoid I wouldn’t otherwise,” says Hayes. “In summer, someone will say, ‘Let’s go swimming,’ and I’ll stay on the beach.

“I feel like I would be more social if there wasn’t this added layer of complexity. I can’t be spontaneous.”

Incontinence means getting to the bathroom quickly, whether to avoid an accident or to deal with the fallout of an accident. Travel — whether a two-hour drive to the shore or a three-week trip to India — makes that tough or impossible. In a new place, it’s not always clear where the bathrooms are, or even if there are any. And carrying enough adult diapers or disposable underwear means more suitcases and the risk of running out in a place where you can’t buy more.

She says she doesn’t want to disavow her incontinence but to accept it. ‘I am an incontinent person,’ she says.

Hayes’ academic interest in identity gives her special insights into her incontinence, too. She says that people who are older tend to think of themselves as disabled. Meanwhile, people who are disabled tend to think of themselves as older. In both cases, they are distancing themselves from their situation, saying to themselves, “This is not part of who I am,” says Hayes.

She says she doesn’t want to disavow her incontinence but to accept it. “I am an incontinent person,” she says.

For many, our very relationship with the bathroom changes. Many people suffering from urge incontinence find themselves rushing to the bathroom, only to get there a little too late. Others, especially men with hesitancy issues, may find themselves unable to empty their bladder, forcing them to return again and again. And still they leak.

The nursing-home dilemma

One of the most profound effects of urinary incontinence on relationships comes when people can no longer care for themselves. At best, they become a burden to their family. At worst, family is overwhelmed and gives up.

Having incontinence doubles a woman’s risk of ending up in a nursing home and triples the risk for men. It’s not necessarily a direct cause. Instead, incontinence is associated broadly with frailty and dementia, independent risk factors for nursing home placement.

Incontinence in the aging is tangled up with many other problems. Says Chen, “I’ve had numerous incontinence patients who, as they age and develop hip problems or arthritis, basically stay home because they can’t get to the bathroom quickly.” Psychologically, when people are confined to home, she says, it promotes depression, which is common in the elderly.

Self-esteem declines, Chen says, and people who are incontinent begin to think about themselves in a different way. Their relationship with themselves changes. “They are not confident about going out; they worry how they smell. These are all things that make the person spiral downward, not feeling very good.”

Eric Sokol, MD, associate professor of obstetrics and gynecology and co-chief of urogynecology and pelvic reconstructive surgery at Stanford, agrees. “We have patients every day who say they feel embarrassed and ashamed. In fact, there are validated studies that show that depression is much more common among patients with incontinence. It really affects feelings of self-worth.”

Jane Eden (a pseudonym), a Midwestern health writer, is facing the question of a nursing home for her elderly mother, Sam (also a pseudonym). Sam lives with Eden’s sister, who does most of the work of caring for her. At 100, Sam is active for her age; a personal trainer comes once a week to help her exercise. But she’s frail, incontinent and increasingly demented. When Sam’s incontinence first started, Eden was worried about how to bring it up.

“I noticed my mother was starting to stuff little wads of toilet paper in her pants and also walking fast to go to the bathroom,” says Eden. Because her mother had already broken some bones falling while rushing to answer the telephone, Eden wanted to find a way to stop this hurrying to the bathroom.

Among the elderly, rushing to the bathroom is a leading cause of falls, and falls lead to fractured hipbones, which lead to hospitalization, rapid decline and death.

“I was really worried about having that delicate conversation. So I said, ‘Mom, why don’t we just get some pads for you so you don’t have run to the bathroom and that way I don’t have to worry about you.’ And she was just like, ‘Fine, that sounds like a great idea.’”

But as the incontinence has become more severe, it’s been harder for Eden to cope. “She needs so much help in the bathroom now.” Eden, an accomplished athlete, gets serious back pain from just a day or two of getting her mother onto the toilet, cleaning her up and then back off five times a day.

Most days, Sam sits all day, which leads to pressure sores, which make her vulnerable to infections. That means that on each trip to the bathroom she needs a thorough cleaning and treatment with creams. Even with outside help, the trips to the bathroom constitute an exhausting, backbreaking regimen for her two daughters.

Eden is on the fence about moving her mother to a nursing home. Asked about it, she thinks for a while and then says that as long as her mother has the strength to sit down on the toilet on her own and to at least help stand up from the toilet, Eden is willing to keep caring for her. The weekly visits from the personal trainer help keep her mother strong enough to do that. And when her mother is too weak to do that?

“Things could change,” Eden says slowly.

It won’t be an easy decision. “My biggest fear is that if we take her to a nursing home, they won’t clean her the way we do and she’ll just die of sepsis in a month or two or three.”

The scope of the problem

Urinary incontinence is a significant contributor to the cost of health care, on the order of $76 billion. That includes direct costs such as diagnosis, treatment, incontinence pads and complications as well as indirect costs such as lost wages by patients and caregivers. The adult diaper market alone is about $1.5 billion per year.

Our demographics are such that a greater and greater proportion of the population will be coping with incontinence in coming decades. “There are suggestions,” says Sokol, “that there won’t be enough physicians trained to take care of this as the population of patients with urinary incontinence grows.” In fact, Stanford has a fellowship program designed to increase the number of urologist and ob-gyn doctors specializing in urinary incontinence and other pelvic floor problems.

An equally serious problem is getting patients to see a doctor who can help, says Sokol, who specializes in pelvic reconstructive surgery. “A lot of patients don’t know what their options are.” They could be candidates for surgical procedures that support or reinforce the urethra and bladder, but getting them to the right specialist is a piece of the puzzle.

“For Mother’s Day,” he says, only half joking, “instead of brunch or a day at a spa, how about getting her an outpatient urethral sling?”

Enemchukwu, a specialist in minimally invasive surgical treatments for incontinence, says that even for older patients like Sam, many treatments are available, ranging from drugs to office-based procedures and outpatient surgeries. But for the elderly, there are special challenges. For example, to make behavioral changes such as cutting back on drinks that can irritate the bladder, going to the bathroom on a schedule or reminding an older person do pelvic floor exercises, you need complete buy-in from all the caretakers, she says.

And that’s often challenging for both patient and caregiver. For caretakers, it can feel like one more source of conflict with the patient, one more thing to coordinate with other caretakers, one more burden. For patients, it’s another step in the relentless loss of autonomy that marks the last years for so many of us. Housebound and forgetful, a person at least wants to be able to have a cup of coffee.

Enemchukwu also says she avoids medicines that can cause side effects such as confusion in the elderly. Studies suggest an association between long-term use of some incontinence medications and dementia, she says. “In the elderly, confusion may have many causes,” she says. “Is it a medication, dementia, an infection or another illness? You have to be really careful.” For urge incontinence — that “got-to-go” feeling — she recommends advanced therapies that calm the bladder directly — through bladder injections, implanting a pacemaker-like device or similar treatments. “These eliminate the need for daily medications for most patients.”

An experiment

Finding a doctor who can help requires pushing through that first bit of embarrassment to bring up what’s happening. And it means asking to see a specialist if your doctor doesn’t offer much in the way of help.

When Karen Wood (a pseudonym), a retired nurse who lives in Florida, first sought medical care for her stress incontinence, a Florida gynecologist installed a urethral sling. Unfortunately, it didn’t work. Wood’s case was difficult, as she’d had a hysterectomy and various other surgeries that had left her increasingly incontinent over eight years. She went back and he gave her medications, but those didn’t help either. Finally, her doctor suggested she see a pelvic floor specialist.

“I realized that Medicare would allow me to come to Stanford, and my sister lives here, so three years ago I called and got an appointment with Dr. Sokol,” says Wood.

Sokol, who does research in novel therapies for incontinence and pelvic floor disorders, suggested a gel-like bulking agent injected into the muscle of her urethral sphincter — a ringlike muscle that holds urine in — and that helped a lot, says Wood. But the cure lasts only 18 to 24 months, after which patients get another injection.

When it was time for her next injection, Sokol mentioned an alternative, a clinical trial that involved injecting thigh muscle cells into the urethral sphincter. Enthusiastically, Wood signed up.

“So in June, they took a bit of tissue from my thigh muscle,” she says. Not long after, Sokol made another injection into her urethral sphincter. It was a blinded study, though, so Wood doesn’t know if she got the experimental muscle-cell treatment or if she was in the control arm of the experiment. At six months, however, she reported an 80 percent improvement in her incontinence. By February, she had stopped wearing pads and reported almost no incontinence.

“I still occasionally have a few drops, but that’s because I go back to my old nursing habits and hold it too long. If I just go to the bathroom when I have to go, I don’t have any leaking problems.” Even sneezing and coughing don’t make her leak. “It’s amazing!” she says. At 69, Wood is delighted to be continent again.

Her advice for others is to get medical help. “Don’t let it affect your life. Get treatment. Get help. And don’t be embarrassed because, you know, it happens to most of us. There are a lot more treatments available now.”