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1.1 Definition ofFecal Incontinence
Fecal incontinence is the involuntary loss of feces [1]. This simple, revised deni-
tion was set forth by the past two international, interdisciplinary committee of fecal
incontinence clinical and research experts of the International Consultation on
Incontinence and the International Continence Society (ICS) [1, 2]. Fecal inconti-
nence is a unique problem that is one of four types of bowel incontinence; the other
types being anal incontinence, atus incontinence, and mucus incontinence. Flatus
incontinence is the involuntary loss of intestinal gas (or atus). Mucus incontinence
is the involuntary loss of mucus from the rectum. Anal incontinence, which is the
involuntary loss of feces, atus, and/or mucus, has the broadest denition, possibly
encompassing the other types of bowel incontinence. There are also subtypes of
anal incontinence including passive, urge, and functional incontinence. For exam-
ple, passive fecal incontinence is the loss of feces without sensing or being con-
sciously aware of the loss. Urge fecal incontinence is the loss of feces associated
with defecation urgency. Functional fecal incontinence is the loss of feces due to
associated problems of limited mobility, cognitive impairment, or environmental
barriers [1].
1.2 Overview oftheImpact ofFecal Incontinence
Fecal incontinence is a distressing problem as it is unpredictable, embarrassing, and
associated with great stigma [1]. As the next section of this chapter reveals, fecal
incontinence decreases quality of life and can have a considerable negative impact
on all aspects of the concept of self, well-being, and social and public interaction.
Fecal incontinence complicates other health problems such as urinary incontinence,
dementia, critical illness, systemic neuropathic diseases (e.g., diabetes), and obstet-
rical injury, to name a few. Fecal incontinence is also a major risk factor for other
problems such as skin damage due to inammation or pressure (see Chap. 14). It
increases the burden of self-management by the individual or the care required by
family members; its development can be the tipping point for admission into a nurs-
ing home [3–6]. Clinical staff are also challenged by the care required for managing
incontinence, especially for older adults with multiple chronic health problems,
including urinary incontinence and dementia [7–9].
Individuals with fecal incontinence need support from clinicians and health care
systems for managing their incontinence [10] and desire to have more control over
this problem in order to live a more normal life and retain their personal dignity
[11]. However, many individuals with fecal or urinary incontinence and their care-
givers lack health literacy about incontinence [12–14] limiting their ability to search
for and understand patient education resources and communicate with healthcare
providers [13, 15–17]. The main components of health literacy are being able to
communicate with a healthcare provider, understand information and make choices
about treatment, access and navigate health information and the healthcare system,
and seek care, manage chronic health conditions, and engage in symptom
D. Z. Bliss et al.
3
self- management [18, 19]. The World Health Organization extends the notion of
health literacy to disease prevention and health promotion as well as to health care,
an idea which many European countries have adopted [20]. The low health literacy
about fecal incontinence of patients and caregivers is exemplied in their lack of
knowledge of the terms and their meaning by which clinicians and published studies
refer to their problem [21]. Informal family or friend caregivers of those with fecal
incontinence desire to increase their knowledge and care capacity for managing
fecal incontinence and skin problems associated with its occurrence [12, 16]. The
need and opportunities for advanced practice nurses to manage fecal incontinence
in any healthcare setting is great.
1.3 Impact ofFecal Incontinence onQuality ofLife
The experience of fecal incontinence for men and women has affected their quality
of life in many negative ways [1]. People with fecal incontinence have described
how it has interfered with their relationships. They perceive that it has threatened
their social acceptability and privacy. Women have feelings of fear and shame before
they enter into new relationships and fear of incontinence during sexual intercourse.
New mothers describe how fecal incontinence after childbirth adversely impacts
their role development and condence as a mother, and their body image [1, 22].
People with fecal incontinence have described anxiety about the potential stigma
and social isolation they may experience and are cautious about who they tell about
their incontinence. Additionally, people with fecal incontinence talk about feeling
“unclean” and the signicant amount of time they need to spend on personal hygiene
and planning to prevent soiling “accidents” in public [1, 23, 24]. They have also
discussed the troubling physical symptoms they experience because of fecal incon-
tinence, along with feelings of distorted body image, poor self-esteem, and loss of
dignity [1].
Although there are many disadvantages to living with fecal incontinence, many
people with these symptoms learn coping and management strategies over time [1].
There are important implications for advanced practice nurses that can be drawn
from the evidence provided below.
1.4 Qualitative Research Perspective
The qualitative research evidence presented in this chapter on fecal incontinence
and quality of life is helpful to advance practice nurses in understanding these expe-
riences from international patient perspectives. Qualitative evidence can also be
used by the advanced practice nurse to inform care planning and decision-making.
This research body can additionally inuence policy formation. Patient stories can
be helpful in sharing the impact of living with fecal incontinence with health care
decision makers, such as politicians, but due to the stigma of disclosure, it is a chal-
lenge to engage patients in sharing their own stories. Thus, the experiences
1 Fecal Incontinence: Denition andImpact onQuality ofLife
4
Fig. 1.1 Model of
domains of quality of
life—the experience of
fecal incontinence
documented in qualitative reports can lend that personal touch to the advanced prac-
tice nurse’s arguments for policy changes.
Qualitative research studies provide a personal perspective of the lives of people
who experience the problematic symptom of fecal incontinence and how it affects
the quality of their lives by providing insight into the psychological, physical, and
social aspects of living with fecal incontinence. The qualitative research evidence
also highlights what is important in treatment for a wide variety of clients with a
diversity of other chronic conditions. While the advanced practice nurse may have
garnered these insights from working with her own patient population, the qualitative
research ndings can serve to inform and extend this personal clinical experience.
An interpretive qualitative approach to research asserts that quality of life is a
temporal, context-bound, subjective phenomenon where the meaning of life experi-
ences illustrates a personal denition of the phenomenon and can be explained in
terms of domains of human experience [25]. Interpretive analysis of qualitative
studies of fecal incontinence resulted in the development of a framework of six
domains of human experience. The domains are living with fecal incontinence
related to: (1) relationships and roles, (2) time and planning, (3) self-esteem, body
image, and bodily symptoms, (4) sexuality, (5) dietary issues, and (6) barriers and
facilitators of seeking treatment (see Fig.1.1) [1, 26].
1.5 Quality ofLife intheDomains ofLiving
withFecal Incontinence
Each quality-of-life domain of living with fecal incontinence will be discussed with
attention to men’s and women’s perspectives, the perspectives only of women, and
those only of men. Implications for the practice of the advanced practice nurse
based key points from the evidence from each domain of living are offered in
accompanying tables (see Tables 1.1, 1.2, 1.3, 1.4, and 1.5).
D. Z. Bliss et al.
5
Table 1.1 Recommendations for advanced nursing practice—support of quality of life in persons with fecal incontinence related to relationships and role
Problems associated with fecal incontinence Practice implications for the advanced practice nurse
Lack of socialization related to fear of public
accidents
Encourage socialization and suggest ways to strengthen coping and prevent accidents in public and
support participation in social events (e.g., wear an absorbent product, take an anti-diarrheal
medication)
Anxiety related to potential social isolation Encourage clients to discuss anxiety concerns about socialization and explore acceptable ways to
decrease social isolation
Fear and shame about disclosing fecal incontinence
to others
Acknowledge and address the stigma, embarrassment, fear, and shame related to fecal incontinence
both in relationships with family, friends, co-workers, and health-care professionals
Discussing fecal incontinence with others who
have the problem was comforting
Facilitate gender sensitive support groups to promote the sharing of practical knowledge of fecal
incontinence symptom management
Interference with the development of the role of a
mother after childbirth
Follow up with women at their post-partum visit, inquiring about the development of fecal
incontinence and discuss treatment options
Offer emotional support and ways to support their mothering role and identity
Educate women before childbirth that fecal incontinence is a complication and not an expected/
natural occurrence
Lack of knowledge by healthcare professionals in
the treatment of fecal incontinence
Provide educational materials about fecal incontinence treatment to primary care providers and
specialists who may provide care to patients who experience fecal incontinence. For example, the
advanced practice nurse could provide rationale for suggested interventions in consultation letters to
primary care providers as a strategy to improve knowledge on the topic
1 Fecal Incontinence: Denition andImpact onQuality ofLife
6
Table 1.2
Recommendations for advanced nursing practice—support of quality of life in persons
with fecal incontinence related to time and planning
Problems associated with
fecal incontinence Practice implications for the advanced practice nurse
Anxiety about fecal
incontinence accidents in
public places
Teach practical strategies to manage fecal incontinence
symptoms (e.g., morning bowel regimens, altering eating habits
(foods and timing), taking ber supplements, or using
anti-diarrheal products, packing absorbent pads, cleansing
supplies, and additional clothing)
Limited travel because of
the fear of accidents
Discuss potential anxiety about travel with clients and educate
about strategies to manage fecal incontinence. Include strategies
to cope during travel into care plan
Delayed treatment because
of embarrassment of fecal
incontinence
Educate and encourage providers to discuss possible symptoms
of fecal incontinence with patients with associated disorders
Work-life complications
related to fecal incontinence
Directly ask about anxiety in relation to work situations and
encourage planning to accommodate fecal incontinence
(workstation near bathroom and other strategies to effectively
manage fecal incontinence discussed above)
Advocate for access to single public toilets in public and work
settings
Teach clients about useful phone applications, such as “Go
Here,” a washroom locator to nd toilets when away from home
Table 1.3
Recommendations for advanced nursing practice—support of quality of life in persons
with fecal incontinence related to self-esteem, body image, and bodily symptoms
Problems associated with
fecal incontinence Practice implications for the advanced practice nurse
Stigma of fecal incontinence
socially and in health care
Make a public commitment to speak out against stigmatizing
chronic health conditions and their management
Advocate for public education to increase knowledge and
empathy regarding chronic health conditions such as fecal
incontinence
Poor self-esteem related to
fecal incontinence
Ask directly and assess for impact of fecal incontinence on
self-esteem
Refer, as necessary, for counselling or psychological support
Encourage use of online support communities, such as Health
Unlocked sponsored by The Simon Foundation for Continence;
convene a support group if none is available for patients
Negative impact on quality
of life from bothersome
physical symptoms
Ask directly about common bodily symptoms in case
embarrassment is preventing disclosure by the client
Assess for, itemize, and address each bothersome bodily
symptom, recognizing the variety and range across clients
Poor body image related to
fecal incontinence
Ask directly and assess for impact of fecal incontinence on
self-esteem
Model and teach positive self-talk and self-afrmations
Teach practical strategies to maintain positive self-image, such
as discreet incontinence products, camouaging products with
darker clothing, etc.
(continued)
D. Z. Bliss et al.
7
Table 1.4
Recommendations for advanced nursing practice—support of quality of life in persons
with fecal incontinence related to sexuality
Problems associated with
fecal incontinence Practice implications for the advanced practice nurse
Avoid sexual intimacy due
to fecal incontinence
Ask directly about the impact of fecal incontinence on sexual
intimacy
Problem-solve with client strategies to introduce intimacy into
their lives, such as discussing fecal incontinence with their
partner, establishing a pattern of fecal incontinence and timing
of sexual activity, and identifying triggering activities and
alternative expressions of intimacy
Restrict the ability to
express feelings of sexuality
with dress/clothing
Discuss expression of sexuality and support problem-solving
expression using clothing and alternatives; advise on current
styles of feminine and stylish underwear that offer absorbency
and containment protection
Table 1.5
Recommendations for advanced nursing practice—support of quality of life in persons
with fecal incontinence related to dietary issues
Problems associated
with fecal incontinence Practice implications for the advanced practice nurse
Restrict certain types
of foods or eating
with others
Acknowledge and empathize regarding the impact of dietary
restrictions and modications on quality of life
Inquire about which dietary strategies have been effective in
reducing symptoms or offer other diet strategies (refer to interventions
in Chap. 6)
Fecal incontinence
symptoms worsen
after consumption of
certain “trigger” foods
or drinks
Inquire directly about trigger foods; request completion of a Bowel
Diary and a diet record completed concurrently to examine possible
trigger food effects
Recommend appropriate dietary modications to lessen fecal
incontinence symptoms
Problems associated with
fecal incontinence Practice implications for the advanced practice nurse
Poor or insufcient coping
strategies
Teach and explain contributing factors to fecal incontinence
Offer a range of interventions with client input and choice
Explain what to expect in terms of improvements and the
timeline for improvement, emphasizing the positive changes
that can come with treatment
Worry that the fecal
incontinence is not treatable
Set goals that are meaningful to the client and realistic in terms
of condition, causes, and available treatment
Assist the client to see change and improvements by sharing an
assessment of progress over time
Table 1.3 (continued)
1 Fecal Incontinence: Denition andImpact onQuality ofLife
8
1.5.1 Domain I: Living withFecal Incontinence Related
toRelationships andRole
Both men and women perceive that fecal incontinence is a threat to their social
acceptability and privacy, and that it affects their relationships [11, 27–30] (see
Table1.1). One example given is feeling uncomfortable in “mixed company” (or a
group comprised of both men and women) because of the possibility of having a
fecal incontinence accident. Individuals report thinking that gender issues are
related to the perception of social risk of accidents because of their fecal inconti-
nence [11, 28]. Both men and women suffer from anxiety because of the potential
social isolation they may experience because of their symptoms of fecal inconti-
nence [11, 27, 31–35].
Women shared their concerns about entering into new relationships because of
their fear and shame of possibly having to disclose their fecal incontinence [33].
Women feel that fecal incontinence is a highly sensitive topic to discuss with others,
and it is strongly associated with guilt and shame [30]. For example, women may
not attend social events and offer excuses not related to their fecal incontinence.
Men and women are cautious about whom they reveal their problems with fecal
incontinence. The selection of these individuals can be a matter of great concern.
Family, close trusted friends, and co-workers are often told because they may not be
able to completely conceal “their secret” of having fecal incontinence [11, 27, 28].
As part of keeping their secret from others, both men and women describe trying to
protect themselves from the unpredictability of having an “accident” (i.e., leaking
feces in public) [33]. Having fecal incontinence post-natally interferes with devel-
oping the mother-infant relationship and contributes to feelings of inadequacy as a
mother and to their ability to return to work [22, 24]. Bonding with their baby and
support from others were factors promoting recovery.
1.5.1.1 Social Support
Individuals with FI can experience a lack of understanding by family members and
fears of marital discord [1, 22]. Social support from spouses is very important for
men and women [11, 27, 28, 33]. They attribute their adaptation to fecal inconti-
nence to the loving, empathetic, unconditional support they receive from their sig-
nicant others [11, 36, 37]. Discussing the problems they have experienced because
of fecal incontinence with others who also have this problem was described as com-
forting and allowing conversation about how to manage the problem [11, 28]. The
use of humor is a resource to avoid humiliation and embarrassment in dealing with
daily symptoms of fecal incontinence, even though these feelings of shame and
humiliation persist [11, 28, 30, 31, 33].
In general, relationships with healthcare professionals are perceived as not help-
ful in terms of providing advice about symptom management. Men and women
report that a lack of information or misinformation was commonly given by health
care providers [11, 27, 28, 33]. Women specically describe that they feel
D. Z. Bliss et al.
9
embarrassed, humiliated, and marginalized when health care providers minimize or
trivialize their fecal incontinence problems and their impact on their quality of life
[28, 30, 33, 34]. After years of dealing with their fecal incontinence symptoms, men
and women describe their interactions with healthcare providers as increasing their
condence with regard to decision-making [36], and comfort providing support to
others with fecal incontinence [11, 37].
1.5.2 Domain II: Living withFecal Incontinence Related toTime
andPlanning
Time and planning have signicant quality of life implications for men and women
with fecal incontinence (see Table1.2). Hours are consumed by people with fecal
incontinence, because of the exhaustive planning to prevent public accidents. Time
is also a signicant issue because of worsening symptoms with aging and trying to
maintain a work life with symptoms of fecal incontinence [1].
1.5.2.1 Planning forRisks ofFecal Incontinence Accidents
Men and women describe spending a signicant amount of time planning for and
worrying about accidents [11, 28, 30]. They talk about their heightened anxiety
about fecal incontinence symptoms and the risk of accidents in public spaces [11,
27, 28, 38, 39]. “Being prepared” is a common theme in discussions related to plan-
ning strategies to avoid accidents which included: morning bathroom rituals, chang-
ing the location of their workstation (relative to the bathroom), altering eating habits
(foods and timing), taking a ber supplement, or using anti-diarrheal products [27,
28, 30, 33, 38]. When going into public places, immediately seeking out the location
and availability of a bathroom is a major consideration [11, 27, 28, 30, 33, 38, 40].
Although men and women with fecal incontinence are constantly worried about
accidents in public places, they do travel. However, travel is limited to familiar
places, and signicant planning is required before travel to prevent potential acci-
dents. Fecal incontinence limited travel for the family [11, 28, 30, 39, 41].
Women are more vigilant with planning to avoid potential accidents in public.
They report that the frequency of stool leakage is unpredictable, and because of this,
they need to be vigilant and prepared for the unexpected [11, 28, 33]. Many women
discuss packing “kits” of absorbent products, cleansing supplies, and extra clothing
as a routine part of planning to leave their home when preparing for an unexpected
accident [27, 28].
1.5.2.2 Concerns About Aging andWork Life
Many men and women have symptoms for months or years before they seek help for
fecal incontinence because of the embarrassment of the symptoms [11, 28]. They
discuss their signicant worry that their symptoms of fecal incontinence will grow
worse with aging in relation to severity, onset, and duration [11, 28, 38].
1 Fecal Incontinence: Denition andImpact onQuality ofLife
10
Work life presents complicated situations for both men and women and limits
some people’s abilities to engage in productive work outside the home [11, 28, 35,
39, 40]. Women specically talked about how they postpone business meetings
because of their fecal incontinence symptoms [28]. Development of fecal inconti-
nence in the postpartum period caused women to worry about returning to work
[22]. A common reason for early retirement for both men and women is dealing
with the symptoms of fecal incontinence [11, 28, 35].
1.5.3 Domain III: Living withFecal Incontinence Related toSelf-
Esteem, Body Image, andBodily Symptoms
Persons with fecal incontinence experience signicant quality of life issues related
to the shame and embarrassment of the physical symptoms of fecal incontinence, as
well as decreased self-esteem and distorted body image [1] (see Table1.3).
1.5.3.1 Stigma
Men and women discuss their perception that poor public knowledge about fecal
incontinence causes them to feel stigmatized about their fecal incontinence [38].
Additionally, they stigmatize themselves because of their inability to control their
symptoms [27, 28, 30, 34, 38]. Women in particular feel shame and unworthiness
due to fecal incontinence [34, 40]. Some women report the need for psychological
consultations because of feeling inadequate and vulnerable [33, 34].
1.5.3.2 Body Image
Men and women have negative changes in body image and self-esteem as a result of
their inability to control the symptoms of fecal incontinence [11, 28, 30, 33]. They
perceive that their emotional life and self-condence are undermined because of the
fecal incontinence and embarrassment [11, 27, 28, 30, 34]. Both men and women
have negative feelings associated with living with fecal incontinence, such as anger,
frustration, injustice, disappointment, hopelessness, despair, and sadness [30]. Men
and women avoid talking about the problem or deny fecal incontinence as coping
mechanisms to prevent threats to their self-esteem and public embarrassment [34].
Women who developed fecal incontinence in the postpartum period experienced
feelings of disgurement instead of adjusting to the return of their usual body shape
[24]. Men and women preserve their body image by dressing carefully to conceal a
possible fecal incontinence accident. Large diaper-like pads are avoided because of
their perceived visibility beneath clothing, and small, discreet disposable pads are
preferred [11, 28, 33, 39]. Women are particularly attentive to their body image,
dress carefully to conceal pads, and wear dark clothing to hide stains if an accident
should happen [28, 29, 33, 38].
D. Z. Bliss et al.
11
1.5.3.3 Physical Symptoms
Physical symptoms are a major quality of life issue for men and women with fecal
incontinence due to the unpredictability of the type, timing, and magnitude of fecal
incontinence events [38, 42]. The most troubling bodily symptom for people with
both fecal incontinence and irritable bowel syndrome is the sense of urgency to have
a bowel movement [38]. Common physical symptoms include: skin excoriation at
the rectum, sensations in the intestines, itching and burning at the rectum, cramping,
feeling of incomplete bowel movements, and odor associated with atus. Other
physical symptoms are leaking stool without defecation sensations, and false,
abrupt, and urgent sensations, usually indicative of defecation [11, 28, 38, 39].
1.5.3.4 Positive Coping
Women who have lived with fecal incontinence for years can establish positive
ways of coping. Women maintain hope and optimism by focusing on getting better
[30]. For example, women perform self-afrmations, such as “I will not worry what
others think of me” or “life has to go on” [30].
Men and women reframe fecal incontinence by asserting control [28, 38]. They
focus on controlling all aspects of their life in relation to fecal incontinence and
avoiding accidents [30, 36]. This involves, early in the experience of fecal inconti-
nence, adapting to the presence of obstacles and “making the best of it” [36]. After
10 or more years of living with fecal incontinence, men and women nd that the
addition of multiple chronic conditions poses further challenges to adaptation [37].
However, by using trial and error, adaptation can continue successfully. A sense of
mastery and new self-condence can result from years of successfully dealing with
the symptoms of fecal incontinence [36, 37].
1.5.3.5 Goal Setting
Positive coping can be enhanced by tailored goal setting. The major goals of people
experiencing fecal incontinence are specic and individual. They relate to reducing
symptoms of fecal incontinence, such as having less frequent leakage, normal (more
formed) stool consistency, and more condence in controlling fecal incontinence
symptoms. They also relate to associated care activities such as lessening the need
for personal hygiene, fewer dietary restrictions, and having a normal daily routine.
Improved public toilet accessibility and pelvic health in general are other goals
[43, 44].
1.5.4 Domain IV: Living withFecal Incontinence Related
toSexuality
The negative impact on sexuality affects quality of life for men and women with
fecal incontinence (see Table1.4). In the research context, women share the sexual
implications of their fecal incontinence more than men. However, some women are
reticent to discuss their sexuality or the effect of their fecal incontinence symptoms
on their sexual functioning [28, 33]. Some women experience no changes in their
1 Fecal Incontinence: Denition andImpact onQuality ofLife