Continence Coach: Opening the Dialogue on Bowel Health

  The high prevalence of dual urinary incontinence (UI) and fecal incontinence (FI) — 70% in nursing homes, 50% in assisted living, and 20% in community dwellers living independently¹ — precipitated formal action in 2005 by the National Association For Continence (NAFC) Board of Directors to expand the NAFC’s mission to address both bladder and bowel control problems faced by individuals. Two years later, the first conference on FI at the National Institutes of Health (NIH) was hosted by the National Institute for Diabetes and Digestive and Kidney Diseases (NIDDK).² The emphasis was on the lack of awareness about FI among the public, physicians and other providers, and industry players.   The Bowel Awareness Campaign that evolved from the conference is ongoing. Numerous studies have been published, and new treatment and management options have emerged that are available directly to patients or through clinical trials. Still, we have a long way to go in understanding, preventing, treating, and managing the life-changing, often multifactorial FI diagnosis.

  At present, published research indicates a United States’ population-wide prevalence of FI ranging from <1% to 25%. Among care-seeking patients in primary care, specialty care, and hospice care populations, the prevalence tops 30%.³ Researchers have concluded that more than one out of 10 adult women in the general population has FI; almost one in 15 of these women has moderate to severe symptoms,⁴ leaving a considerable number haunted by mild to moderate symptoms that remain undiagnosed and untreated. The estimated prevalence of FI in the community ranges from 6% in women younger than 40 years to 15% in older women⁴; older men likewise are more vulnerable than younger men. The wide variation in prevalence is a factor of differences in assessment tools, survey designs, and definitions of the problem. Although bowel control often is thought to be synonymous with normal sphincter muscles, other factors are equally important. Hence, FI has to be considered as the common final pathway symptom of multiple independent etiologies. Progress in FI management will be made as more individuals reveal symptoms to their providers so the full breadth of the condition with various etiologies that can be witnessed will be identified and documented.

  Definitions and descriptors. Consensus on how best to define FI and what descriptors to use has yet to be reached. The American Society of Colon and Rectal Surgeons⁵ (ASCRS) defines FI as “the involuntary loss of rectal contents (feces, gas) through the anal canal and the inability to postpone an evacuation until socially convenient.” Recent consumer research indicates the term fecal incontinence is off-putting to consumers and discourages them from revealing symptoms to their doctors for diagnoses.⁶ One of the greatest challenges for healthcare providers is to encourage individuals to engage in health-seeking behavior and not be intimidated and remain silenced by the fear of being “found out” through odor detection or more public accidents. The challenge can be best addressed by giving individuals a means for addressing and speaking about their symptoms. Existing templates of bowel diaries fail to easily rate severity of symptoms; therefore, providers need a less intrusive means of assessment. Patients prefer to be asked by questionnaire rather than respond face-to-face; in addition, patients have revealed that dialogue with a nurse is preferable to being questioned about symptoms by a doctor.⁷ Not surprisingly, only an estimated 10% to 30% of patients with FI report symptoms.⁷ Thus, in the interest of being more patient-centered, particularly when approaching those with lighter symptoms, accidental bowel leakage (ABL) as a label is considered far friendlier for consumers than fecal incontinence and preferred by three out of four (71%) women surveyed.⁶

  Causes. It has long been known that vaginal childbirth is the leading causal factor of FI in women, especially women who have experienced a forceps delivery. Evidence-based medical practices will remove this risk factor for future generations. Yet childbirth isn’t the only culprit and women aren’t the only ones affected. Other common risk factors for FI, in addition to urinary incontinence,^4,8,9 in both men and women include:
    • Gall bladder removal, which can result in fecal urgency due to fats remaining in the body’s intestinal tract
    • Irritable bowel syndrome
    • Surgery such as a hemorrhoidectomy in which tissue damage can occur
    • Radiation for cancer, such as following prostatectomy
    • Pelvic organ prolapse (rectocele) in women
    • Being overweight, seen more commonly in women than men
    • Being a heavy smoker for more than 20 years
    • Advancing age
    • Having diseases that affect the nervous system such as diabetes, stroke, and Parkinson’s disease (PD)
    • Inability to reach the toilet in time, caused by such conditions as arthritis or disease such as PD.

  Management. In the most severe cases of FI, a permanent colostomy is performed, surgically creating an opening in the abdominal wall for an odor-proof collection device. Other invasive procedures for cures are pursued with limited success, including the sphincteroplasty and, more recently, the artificial anal sphincter for addressing defects and separation of the rectal muscles and antegrade colonic enema (ACE) procedure for severe constipation. More recent, less invasive surgical options offer promise for selected patients, including a sacral nerve stimulation device that functions much like a cardiac pacemaker and already has proven successful for urge urinary incontinence. In some cases, symptoms have been eliminated by 90%. In some patients, injectibles to add bulk to the anus muscles improve sensation. Radiofrequency energy is being used on a limited basis as well adding permanently bulked tissue. Treatments undergoing testing include a rectal sling, implantation of a ring of magnets, and the use of stem cells.

  Additionally, an over-the-counter pad designed with an absorbent core and odor shield that fits comfortably in women’s buttocks is available through retail outlets including Target, Walmart, and retail drug store chains.¹⁰ The product is targeted to the woman who accidentally but frequently stains her underwear because of bowel leakage. Depending on the severity of her problem and how bothered she is, Butterfly™44 (Butterfly Health, Inc, Los Gatos, CA) may be the only product needed, or it may serve as an essential first step to acknowledging the problem so symptoms can be shared with an internist or gynecologist. A new anal plug¹¹ that utilizes an inflatable balloon that is easy for the user to insert and expel with a bowel movement is available by prescription; it, too, is aimed at managing mild ABL.

  When it comes to the bowel health of our population and the vast numbers with ABL who remain otherwise clinically undiagnosed and unserved, think of yourself as a community nurse using a vocabulary that opens rather than closes doors of dialogue.

Dr. Muller was the Executive Director, National Association For Continence (NAFC). The NAFC is a national, private, nonprofit organization dedicated to improving the quality of life of people with incontinence. The NAFC’s purpose is to be the leading source for public education and advocacy about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence. This article was not subject to the Ostomy Wound Management peer-review process.

1. National Association For Continence mission statement. Available at: www.nafc.org/about/mission/. Accessed November 18, 2013.

2. Available at http://consensus.nih.gov/2007/incontinencestatement.htm. Accessed November 17, 2013.

3. Markland A. Epidemiology and Prevalence of Fecal Incontinence. Presented at National Institute for Diabetes and Digestive and Kidney Diseases. Bethesda, MD. August 19–20, 2013.

4. Bharucha AE, Zinsmeister AR, Locke GR, Seide BM, McKeon K, Schleck CD, Melton LJ. Prevalence and burden of fecal incontinence: a population-based study in women. Gastroenterology. 2005;129(1):42–49.

5. Definition of fecal incontinence. Available at: www.fascrs.org/physicians/education/core_subjects/2009/fecal_incontinence/. Accessed November 17, 2013.

6. Brown HW, Wexner SD, Segall MM, Brezoczky KL, Lukacz ES. Accidental bowel leakage in the mature women’s health study: prevalence and predictors. Int J Clin Pract. 2012;66(11):1101–1108.

7. Rogers R. Measuring the Burden of Fecal Incontinence and Developing Treatment Endpoints. Presented at National Institute for Diabetes and Digestive and Kidney Diseases. Bethesda, MD. August 19–20, 2013.

8. Barucha AE, Zinsmeister AR, Schleck CD, Melton LJ 3rd. Bowel disturbances are the most important risk factors for late onset fecal incontinence: a population-based case-control study in women. Gastoenterology. 2010;139(5):1559–1566.

9. Whitehead WE, Borrud L, Goode PS, Meikle S, Mueller E, Tuteja A, et al. Fecal incontinence in US adults: epidemiology and risk factors. Gastroenterology. 2009;137(2):512–517.

10. Available at: www.butterfly.com. Accessed November 17, 2013.

11. Deutekom M, Dobben AC. Plugs for containing faecal incontinence. Cochrane Database Syst Rev. 2012. doi:10.1002/14651858.CD005086.pub3.