“No Blemish but the Mind”: Staving off the Stigma of Incontinence Garments

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When it comes to the bathroom, control is something most people take for granted and would feel a great deal of embarrassment about should that control be compromised. Many people were toilet trained with a bit of shame thrown in to nudge them along the path; others can remember embarrassing incidents of incontinence from nursery or even elementary school, either personal episodes or ones that happened to others and invited ridicule. Being teased about incontinence by some grade school wag who insisted water spilled on someone’s lap was due to incontinence would make a sensitive child cringe with embarrassment. There is a great deal of social shame and stigmatization attached to matters of continence.

Yet Cheryle B. Gartley, President and Founder of The Simon Foundation for Continence, makes the point that each of us is vulnerable to the two Ss: in one second or in one sentence, our lives can change to the point where such stigmatization becomes highly significant. In one second any of us might be in a terrible accident that changes life forever in terms of a health condition or disability. In one sentence uttered in a medical office, a person can hear a diagnosis that will change his or her life forever.

The stigma attached to incontinence may suddenly become someone’s daily experience, subjecting a person to what Gartley calls “stranger danger”—the look, the remark, the probing questions that make simply going to the grocery store an outing fraught with opportunities for social discomfiture. For in addition to the two “Ss” that can change lives, there is the big A: Aging. With aging comes a host of physical differences, all of which may be stigmatized in our hard-driving, achievement-oriented culture.

Each of us is vulnerable to the two Ss: In one second, any of us might be in a terrible accident that changes life forever. In one sentence, a person can hear a diagnosis that will change his or her life forever.

–Cheryle B. Gartley, President and Founder of The Simon Foundation for Continence

In addition to the two “Ss” that can change lives, there is the big A: Aging.

As people age, urinary and fecal incontinence (UI and FI, respectively) may become issues. The complexity of the female reproductive system as well as men’s tendencies toward enlarged prostate glands later in life can bring about incidents of UI. Almost everyone has had an incident of FI when sick with diarrhea, and elderly people’s more compromised systems and difficulties with mobility may increase such incidents. Other health conditions related to aging may also lead to more frequent episodes of UI and/or FI.

Often the first resort for caregivers is to introduce diapers. Indeed, many consider adult diapers (also known as shields, adult fitted briefs, adult protective undergarments, incontinence pads, and other names) the easiest, most practical, most convenient and easily accessed first line of defense against incontinence. Bloomberg Businessweek predicts that, as the Baby Boomers age, the sales of adult incontinence garments may outstrip those for infants. Already the adult market is predicted to grow almost 50% by the year 2020, whereas baby diaper sales will grow at just about 3%. Kimberly-Clark, a manufacturer of diapers for all ages, expects the “silver tsunami” of increasing numbers of aged people to increase its market share in adult incontinence products by a billion dollars in the next few years.

Bloomberg Businessweek predicts that, as the Baby Boomers age, the sales of adult incontinence garments may outstrip those for infants.

Kimberly-Clark and other personal product manufacturers are striving to fend off the stigma attached to adult incontinence by featuring attractive models and pitching their incontinence products in a fashion-conscious way. Adult diapers are, commercially at least, coming out of the closet.

This is helpful because researchers have found, in fact, that incontinence has profound impact on the quality of people’s lives. A study published in the journal Diseases of the Colon and Rectum in the year 2000 noted the psychological effects of FI. People thus affected sometimes live in fear of an episode of loss of control. Many hesitate to do the kinds of things they like to do in case they have an “accident” while doing it. They may avoid social activities, dread leaving their homes, or feel the need to be near a bathroom at all times when in public places. Public transportation and its difficult-to-access bathrooms or lack of them may cause intense anxiety. In fact, people with UI or FI may feel all of the above.

Indeed, the shame and secrecy surrounding such conditions confounds scientific research when searching for effective treatments and prevention. Researchers reporting in the journal Gastroenterology in 2009 noted that the people’s reluctance to admit to incontinence, even to their doctors, has limited scientists’ ability to study the condition thoroughly and to find solutions.

Perhaps dispelling the stigma attached to adult incontinence and products will be led by the private sector in the interests of making big profits. Yet it would behoove all of us to re-examine this stigma so that frank conversations between doctors and patients, caregivers and their charges, and elderly persons and their relatives can lead to more understanding and empathy all around.

Urinary Incontinence (UI)

Women experience UI more often than men do because of their biological makeup. The bodily strains of carrying children in pregnancy, giving birth, going through menopause, and the complexities of female biology seem to make women more prone toward UI. However, men can also experience it through injury, disease, surgery, enlarged prostate glands, and other health conditions that may accompany aging.

UI is linked to age because in general it occurs because of changes in muscles and nerves. However, aging is not a cause of incontinence, but rather changes in the body as we age can precipitate it. It is important to note that incontinence is not an inevitable part of the aging process.

Expelling urine from the bladder (an expandable muscle for storing urine) into the urethra (a flexible tube that drains urine out of the body) involves a series of muscular contractions and nerve sensibilities and responses. As nerves and muscles change with age, the system can become compromised.

The Mayo Clinic suggests a number of treatments, ranging from the simple to the complex. There are different types of UI, and treatment depends upon cause.

For example, a person may experience stress UI when there is extra pressure on the urinary tract and its organs. A belly laugh, a cough, certain types of activity such as lifting, or even gaining weight can put pressure on the bladder and urethra such that they malfunction and urine is leaked. Simple weight loss or recovery from a cough may help a great deal.

An overactive bladder may make the person feel sudden, compelling urges to go to the bathroom. Cutting back on caffeine and/or alcohol, which stimulate urine production, may be a simple solution. Medications designed for the bladder can sometimes tame such over activity, yet medications for other parts of the body may be culprits in producing overactive bladder as well. For example, some types of high blood pressure medicine may increase urine output and/or relax the bladder so that urine leaks. A new or different prescription may alleviate the problem.

Simple solutions are best tried first. Sometimes doing Kegel exercises on a regular basis for a number of weeks can clear up a case of stress UI. Kegel exercises strengthen internal muscles that are used in stopping the flow of urine from the body. Doing Kegel exercises can have a salutary effect on stress UI. For other cases and causes of UI, a doctor may recommend keeping a diary of urination throughout a day for purposes of diagnosis and as a basis for training the bladder to sustain control for longer and longer periods of time.

Kegel exercises strengthen the pelvic floor through voluntarily contracting the inner muscles as if cutting off the stream of urine. This works for women and men. The exercises should be done with an empty bladder.

Other treatments have been developed, including stimulation of the nerves to the bladder, and there is a new, commercially available device which is inserted into the vagina, as a tampon is, and this device props up the urethra to prevent leakage. A pessary, another kind of insertion that looks like a rubber ring, also supports internal organs to prevent leakage. For men, a urinary sphincter control ring may be used. It is called a penile clamp, and it is a compression device that compresses the urethra to stop urine flow. It may be taken on and off.

Injections to thicken the sphincter of the bladder are also a possible treatment. Introducing surgical stitches to support a weakened bladder neck or bracing the bladder neck with a strip of a woman’s own tissue (the Burch and sling procedures, respectively) are possible surgical solutions too. Catheterization, either intermittent or indwelling, is a possible management technique.

As all of the above show, there are multiple alternatives to cope with urinary incontinence.

Fecal Incontinence (FI)

Statistics on the prevalence of fecal incontinence are compromised by the secrecy most people keep about such a matter. Physicians are often kept in the dark. Caregivers, of course, will experience it with some patients, but the patient may resist anyone else knowing about it, even family members. This can hinder treatment.

Researchers reporting a survey-based study in the journal Gastroenterology in 2009 found that, among non-institutionalized adults (with noted caveat that institutionalized adults most likely would have higher rates of FI), FI was found to be more common in the elderly, although the health reasons surrounding it were not clear or conclusive. Interestingly, the survey did not find differences between men and women when it came to FI, even though most researchers theorize that injuries sustained during childbearing and giving birth would predict higher rates of FI among women.

Indeed, internal damage, including nerve damage, is a major cause of FI. The elderly, having had more years of wear and tear on the body, would naturally be more prone to it than younger persons, yet FI is not an inevitable part of aging. Battles with constipation over a lifetime, for example, may expand and weaken muscles and desensitize nerves involved in continence, as may long term battles with diarrhea. Loss of elasticity in the rectum for a variety of reasons may result in FI. Surgical interventions over the course of a lifetime may leave scars and/or damage that eventually lead to FI.

Like urinary incontinence, fecal incontinence has far-ranging consequences in people’s lives. Withdrawing from social life, feeling ashamed and embarrassed, being unable or unwilling to maintain employment or commitments outside the home, and also admission into nursing homes are all potential consequences of FI. Incontinence is often a line in the sand as far as caregivers go, especially informal caregivers like family members who feel they can no longer keep up with the needs of an elderly loved one suffering from incontinence.

Yet treatment may be as simple as changing the diet, doing exercises to strengthen internal muscles, using biofeedback to train the bowel, or taking medications or preparations to either form or loosen stool.

Surgery may be needed as well, perhaps concentrating on the sphincter (the anal ring that ultimately releases fecal matter) either by surgically repairing or strengthening the sphincter or implanting an artificial sphincter. The ultimate surgery dealing with FI is a colostomy, where the bowel is emptied through a diversion that comes out through the stomach and empties into an attached bag. This is considered a last resort.

If it is impossible to control UI or FI through medical means, adult diapers or incontinence garments help to obtain social continence. There are also bed pads available for people who struggle only with night time emissions.

Respect and Dignity

Caregivers need to practice extra sensitivity when helping someone with UI or FI. The patient’s dignity should always be preserved. This means keeping the person’s situation confidential and not talking about it in front of anyone else, including family members. In public, the caregivers can keep an eye out for rest rooms and gently and politely offer opportunities to use them. They may also preserve the person’s dignity by not using the word “diapers” but calling the incontinence garments “adult briefs,” “adult undergarments,” “shields,”, or “protective pads.”

An elderly patient suffering from UI or FI or both should be treated with the utmost respect and consideration for the intense stigma attached to bodily functions or bodily differences in our society. Gartley commented on “stigma” and its relationship to perceived differences in the human body.

“Humans don’t like differences,” she noted. “They just don’t.” Differences are all too often interpreted as being “less than” or defective. “Americans in particular don’t like lack of strength or power,” Gartley observes. In a culture that emphasizes what people do rather than the totality of their humanity, the elderly are subjected to “multiple stigmas.” What, for example, Gartley asks, does the cultural habit of calling elderly people “Dearie” or “Honey” say about the person speaking and the person receiving the words? Such words patronize the elderly and show a power differential. In fact, Gartley says, “Verbal and non-verbal stigmatization are compounded in aging.”

Certainly there is a stigma attached to having UI or FI and having to wear protective garments. This stigma may be magnified when the person with incontinence must submit to having undergarments changed by a caregiver.

A family member or caregiver who wishes to broach the subject might begin by mentioning to the elderly person that all people have experienced FI and UI as babies and toddlers, during incidents of illness at different times of life, and often, as older people. Caregivers may talk about how common such situations are, even recounting a personal incident, and then asking respectfully if the elderly person thinks he or she might need some help or medical advice in that area of life.

It is important for society and all caregivers to understand that this condition among the elderly does not render them less worthy of regard and respect than anyone else. Thinking of them not as “incontinence patients” but as “patients with incontinence” puts the person first, above the health condition, and reminds us that we are dealing with a valuable human being who happens to have an issue many of us have experienced and will experience during a lifetime.

Incontinence is not an issue of power, willpower, control or competence. It is a health condition of the body, nothing more.

Caregivers and all those who deal with older people or with anyone else whose health, appearance, or prowess does not live up to our society’s ideal of perfection would do well to remember their Shakespeare:

“In nature there’s no blemish but the mind.
None can be called deformed but the unkind.”
Twelfth Night

Sources

Interview with Cheryle B. Gartley, President and Founder, The Simon Foundation for Continence. (February 2016).

Hymowitz, Carol. (February 11, 2016). The Adult Diaper Market Is About To Take Off. BloombergBusinessWeek. Available at http://www.bloomberg.com/news/articles/2016-02-11/the-adult-diaper-market-is-about-to-take-off. Retrieved February 12, 2016.

 

Rockwood, Todd H., Church, James M., Fleshman, James W., Kane, Robert L., Mavrantonis, C., Thorson, Alan G., Wexner, Steven D., Bliss, Donna, Loww, Ann C. (January 2000). Fecal Incontinence Quality of Life Scale; Quality of Life Instrument for Patients with Fecal Incontinence. Diseases of the Colon and Rectum, 43(1). Available at

http://patientreportedoutcomes2.sites.olt.ubc.ca/files/2014/04/Fecal_Incontinence_Quality_of_Life_Paper.pdf. Retrieved February 10, 2016.

Mayo Clinic Staff. Fecal Incontinence. Available at http://www.mayoclinic.org/diseases-conditions/fecal-incontinence/symptoms-causes/dxc-20166883 and http://www.mayoclinic.org/diseases-conditions/fecal-incontinence/diagnosis-treatment/treatment/txc-20166903. Retrieved February 10, 2016.

Mayo Clinic Staff. Urinary Incontinence. Available at http://www.mayoclinic.org/diseases-conditions/urinary-incontinence/basics/treatment/con-20037883. Retrieved February 11, 2016

National Institute of Diabetes and Digestive Kidney Diseases. U.S. Department of Health and Human Services. Urinary Incontinence in Women. Available at http://www.niddk.nih.gov/health-information/health-topics/urologic-disease/urinary-incontinence-women/Pages/facts.aspx. Retrieved February 10, 2016.

WebMD. Diet, Drugs, and Urinary Incontinence Symptoms. Incontinence & Overactive Bladder Health Center. Available at http://www.webmd.com/urinary-incontinence-oab/urinary-incontinence-diet-medications-chart?page=2. Retrieved June 10, 2016.

Whitehead, William E., Borrud, Lori, Goode, Patricia S., Meikle, Susan, Mueller, Elizabeth R., Tuteja, Ashok, Weidner, Alison, Weinstein, Milena, Ye Wen. (August 2009). Fecal Incontinence in U.S. Adults: Epidemology and Risk Factors. Gastroenterology 137(2):512-517.e2. Doi:  10.1053/j.gastro.2009.04.054. PubMed. Available at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2748224/. Retrieved February 10, 2016.

The Simon Foundation for Continence. Bowel Incontinence. Fact Sheet. Available at http://www.simonfoundation.org/Images/Bowel_Incontinence_Fact_Sheet%201-26-2016.pdf. Retrieved February 10, 2016.

 

 

 

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