Barriers to seeking care for accidental bowel leakage: A qualitative study: Beyond the Abstract

Urinary and fecal incontinence are treatable conditions that affect more than 60 percent of older women in the United States, but the majority (50% of women with urinary incontinence and 70% of women with fecal incontinence) do not seek care. While urinary incontinence has gained more public acceptance due to media portrayal and increased awareness of treatment options, fecal incontinence remains especially stigmatized and significantly undertreated.

Just under ten percent of US adults have monthly fecal incontinence, and this prevalence increases with age1. Associated factors include disorders of chronic bowel disturbance (such as irritable bowel syndrome, inflammatory bowel disease, diarrhea, constipation), diabetes, and urinary incontinence2 – conditions that we see commonly in practice. As many as a third of women with urinary incontinence also have fecal incontinence, but women with both urinary and fecal incontinence are more likely to receive care only for their urinary incontinence, even when they are seen by subspecialists.3 We therefore sought to identify reasons why women with fecal incontinence might delay or avoid seeking care for their condition, and uncovered several unanticipated findings. 

Through focus groups and cognitive interviews we identified 12 barriers to care-seeking for fecal incontinence, many of which are similar to those that have been previously identified as barriers to urinary incontinence care-seeking4. Not surprisingly, lack of knowledge about treatment options and fear of invasive tests and treatments were barriers. Also commonly mentioned were normative thinking, such as perceiving the symptoms to be a normal, inevitable part of aging, and avoidance/denial, such as hoping that the symptoms would resolve on their own. Concepts of self-blame, embarrassment, shame, stigma, and isolation emerged as powerful barriers to care-seeking for fecal incontinence. Women shared stories of humiliation and failed attempts at concealment – stories that, while poignant, were not surprising.

However, we did not expect to learn that so many women did not think of their fecal incontinence as a medical condition, and thus did not think to discuss it with a physician. “It never even occurred to me,” said one woman. And another: “I saw a poster [for this study]…and it was like, ‘Oh my goodness, this is something?  It’s not just me, it’s like other people.’ But I didn’t even know there was a name for it. I didn’t even know it was a thing. I thought I just had to live with it.” And a third: “How can you talk about something if you don’t even know what it is?”4 In retrospect, perhaps we should have anticipated this finding. In a prior national survey of almost 1,000 women with fecal incontinence, we learned that more than 50% had never heard of “fecal incontinence” or “bowel incontinence,” and that over 70% preferred the term “accidental bowel leakage” to the more commonly used medical terms of fecal or bowel incontinence.2 

We were also surprised to learn how many women had negative prior experiences attempting to seek care. Participants recounted stories of physicians pretending not to notice stool leakage that happened in the office, or pretending not to hear questions about these symptoms, prompting patients to conclude that treatment options must not exist. Others told stories of physicians discouraging treatment, saying it was ineffective or side effects were intolerable, or dismissing symptoms as expected with aging. Listening to the transcripts as a practicing physician, I wondered how often I have similarly discouraged patients, without ever intending to, simply by failing to say, “I don’t know, but let me look into it?”

Those of us who are practicing physicians are in the privileged position of being able to combat these barriers with almost no effort at all, and our qualitative study participants told us how. They recommended having written information, such as pamphlets or posters, displayed in our waiting rooms, and adding questions about bladder and bowel leakage to our questionnaires. These simple strategies promote awareness of fecal incontinence, or accidental bowel leakage, as a treatable medical condition, and also indicate our willingness as providers to engage in a conversation about these symptoms. They recommended that we ask our patients about symptoms of fecal incontinence, using words they can understand. If a patient endorses symptoms, and fecal incontinence is not something you treat, fear not: she is likely to be happy with reassurance and referral. In another recent qualitative study of women with fecal incontinence, hope for improvement, personal effort to control symptoms, and encouragement to go on living life fully were reported as key concepts regarding their treatment.5 It is likely that your patient will be grateful you asked and comforted when she learns that her condition is common and treatable, often through changes she can make on her own. 

The first line therapies for fecal incontinence are similar to those used for urinary incontinence: pelvic floor muscle therapy with biofeedback, avoidance of dietary triggers, fiber supplementation to optimize stool consistency. Referral to pelvic floor physical therapy and clinical nutrition will resolve symptoms for the majority of patients. Attention to skin hygiene is important and there are products that exist specifically for fecal incontinence, such as rectal inserts and body liners. For women with urge-associated fecal incontinence and loose stools, using over-the-counter loperamide can improve symptoms dramatically. If those strategies are ineffective, other treatment options include a vaginal bowel control device, anal bulking injections, sacral neuromodulation, anal sphincteroplasty, implantation of a magnetic anal sphincter, and even colostomy. Such options may be available through referral to urology, urogynecology, colorectal surgery, or gastroenterology. 

As urologists and urogynecologists who treat women with incontinence and other pelvic floor disorders, we are in a unique position to reach and educate a particularly high risk population. Even if fecal incontinence does not fall within your scope of practice, you can provide reassurance and hope, along with appropriate referrals. So next time you’re talking with a patient about her urinary leakage, consider opening the back door: “How about your bowels? Problems with accidental bowel leakage? Incontinence? Constipation?” You may change her life just by asking.

Written by: Danielle Westenberg and Heidi W. Brown

References:
1. Whitehead WE, Borrud L, Goode PS, et al. Fecal incontinence in US adults: epidemiology and risk factors. Gastroenterology. 2009;137(2):512-517, 517 e511-512.

2. 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.

3. Cichowski SB, Komesu YM, Dunivan GC, Qualls C, Rogers RG. Written versus oral disclosure of fecal and urinary incontinence in women with dual incontinence. Int Urogynecol J. 2014;25(9):1257-1262.

4. Brown HW, Rogers RG, Wise ME. Barriers to seeking care for accidental bowel leakage: a qualitative study. Int Urogynecol J. 2016.

5. Cichowski SB, Dunivan GC, Rogers RG, Komesu YM. Patients' experience compared with physicians' recommendations for treating fecal incontinence: a qualitative approach. Int Urogynecol J. 2014;25(7):935-940.

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