Experiences of patients with chronic gastrointestinal conditions: in their own words.

Abstract

Irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) are chronic conditions affecting millions of individuals in the United States. The symptoms are well-documented and can be debilitating. How these chronic gastrointestinal (GI) conditions impact the daily lives of those afflicted is not well documented, especially from a patient's perspective.
Here we describe data from a series of 22 focus groups held at three different academic medical centers with individuals suffering from chronic GI conditions. All focus groups were audio recorded and transcribed. Two research team members independently analyzed transcripts from each focus group following an agreed upon coding scheme.
One-hundred-thirty-six individuals participated in our study, all with a chronic GI related condition. They candidly discussed three broad themes that characterize their daily lives: identification of disease and personal identity, medications and therapeutics, and daily adaptations. These all tie to our participants trying to deal with symptoms on a daily basis. We find that a recurrent topic underlying these themes is the dichotomy of experiencing uncertainty and striving for control.
Study participants' open dialogue and exchange of experiences living with a chronic GI condition provide insight into how these conditions shape day-to-day activities. Our findings provide fertile ground for discussions about how clinicians might best facilitate, acknowledge, and elicit patients' stories in routine care to better address their experience of illness.

Full text

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RESEARCHOpen Access
Experiences of patients with chronic
gastrointestinal conditions: in their own words
Jennifer B McCormick1,5,8*, Rachel R Hammer2, Ruth M Farrell3,7, Gail Geller4, Katherine M James5,
Edward V Loftus Jr6, Mary Beth Mercer7, Jon C Tilburt1,5and Richard R Sharp7
Abstract
Background: Irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) are chronic conditions affecting
millions of individuals in the United States. The symptoms are well-documented and can be debilitating. How
these chronic gastrointestinal (GI) conditions impact the daily lives of those afflicted is not well documented,
especially from a patient’s perspective.
Methods: Here we describe data from a series of 22 focus groups held at three different academic medical centers
with individuals suffering from chronic GI conditions. All focus groups were audio recorded and transcribed. Two
research team members independently analyzed transcripts from each focus group following an agreed upon
coding scheme.
Results: One-hundred-thirty-six individuals participated in our study, all with a chronic GI related condition. They
candidly discussed three broad themes that characterize their daily lives: identification of disease and personal
identity, medications and therapeutics, and daily adaptations. These all tie to our participants trying to deal with
symptoms on a daily basis. We find that a recurrent topic underlying these themes is the dichotomy of
experiencing uncertainty and striving for control.
Conclusions: Study participants’ open dialogue and exchange of experiences living with a chronic GI condition
provide insight into how these conditions shape day-to-day activities. Our findings provide fertile ground for
discussions about how clinicians might best facilitate, acknowledge, and elicit patients’ stories in routine care to
better address their experience of illness.
Keywords: Chronic gastrointestinal conditions, Inflammatory Bowel Disease, Irritable Bowel Syndrome, Patient
adaptation, Symptom experience
Background
Irritable bowel syndrome (IBS) and inflammatory bowel
disease (IBD), including Crohn’s disease and ulcerative
colitis (UC), affect up to 16.3 million people in the Uni-
ted States [1-3]. As chronic conditions, IBS and IBD
have far-reaching effects on a patient’s overall quality of
life. Clinically these two conditions are different with
respect to treatment; however, they share some symp-
toms. These conditions generally manifest as diarrhea,
constipation, bloating, lethargy, bowel discomfort and
pain, ulcers, intestinal bleeding, weight loss, skin lesions,
andfever-thelattersymptomsexperiencedby
individuals with IBD [4]. The physical, emotional, and
financial burdens of illness increase as these patients
receive medical therapies and even surgeries, as is often
the case for those with IBD, to ameliorate their condi-
tion. Although pathologically different, [5,6] both IBS
and IBD share many similarities in patients’ experiences
of illness [7,8].
Studies examining quality of life in patients with
chronic illness, particularly well-researched in the cases
of breast cancer [9] and HIV, [10] have helped physi-
cians address the struggles their patients face between
office visits. Struggles along the journey of illness may
include the onset of undiagnosed symptoms, the process
of diagnosis, experimentation with treatments, and
sometimes, the reshaping of one’s personal identity.
* Correspondence: mccormick.jb@mayo.edu
1Division of Internal Medicine, Mayo Clinic, Rochester, MN, USA
Full list of author information is available at the end of the article
McCormick et al. Health and Quality of Life Outcomes 2012, 10:25
http://www.hqlo.com/content/10/1/25
© 2012 McCormick et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative
Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and
reproduction in any medium, provided the original work is properly cited.

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While these studies suggest that people with chronic ill-
ness may share similar experiences, those with a chronic
gastrointestinal (GI) condition like IBS or IBD may also
have experiences that are unique.
A patient’s perceived disease experience is often diffi-
cult for clinicians to interpret [11]. For example, when
gastroenterologists were queried about symptom experi-
ences of their UC patients, they tended to under-esti-
mate occurrence and impact on daily life [12]. Quality
of life (QOL) indices specific to chronic GI patients
[13,14] may help providers better understand their
patients’ experiences. The IBD Questionnaire (IBDQ)
does include some social and emotional domains but
experts have recognized a need to expand these parts of
the IBDQ [15,16]. Studies have examined how occur-
rence and severity of physiological symptoms, like flare-
ups, can influence a patient’s perception of her QOL
[17,18]. There may also be an association between per-
ceived QOL and a patient’s social support system, [19]
while studies of coping mechanisms and unmet needs
have shown that psychiatric distress is not uncommon
in individuals with IBD and IBS [7,20,21]. In addition to
tools that rate and track symptoms and QOL numeri-
cally, investigators have also used qualitative approaches
to further explore the illness experiences of patients
with a chronic GI condition in their own words [22-28].
Most of these studies, however, have been exploratory
studies at single centers.
In 2009, we conducted a multi-site focus group study
of individuals with IBS and IBD. The relational dynamic
that naturally ensued in each focus group session was
conducive to frank, open conversations about partici-
pants’ personal experiences with chronic GI conditions-
perspectives that might not be voiced during a regular
clinical interaction. Here we report on themes related to
those experiences which emerged organically in our
focus groups. Their reflections on what it is like to live
with IBS/IBD, from diagnosis to the day-to-day ups and
downs of life with a chronic condition, formed the basis
for this analysis.
The aim of the parent study was to examine partici-
pant attitudes and beliefs toward probiotics, bioengi-
neered probiotics, and applications of metagenomic
technologies. This paper is the result of a sub-analysis
themes about the lived experience of GI illness that
emerged during the focus groups.
Methods
Design
We used a focus group design to elicit participants’
experiences of illness and adaptation in their own
words. Focus groups allow participants who share one
or more common characteristics to reflect together
about a shared aspect of life [29]-in this case, living with
chronic gastrointestinal illness. We conducted 22 focus
groups comprised of four to 10 individuals from March
through August 2009 across three academic medical
centers in the Midwest and Eastern United States to
assess participants’ perspectives on existing and future
uses of probiotics for chronic GI disorders. We held 22
focus groups in an effort to have representation from all
three sites and from three major diagnostic categories:
Crohn’s disease, ulcerative colitis, and IBS. Some focus
groups were composed of individuals who reported to
have IBD, some with individuals reporting to have IBS,
and some with a mix of individuals. During these con-
versations participants’ experiences of disease emerged.
Our research design for the parent study on probiotics
and applications of metagenomics technology has been
reported in detail previously [30]. This study was
approved by the Institutional Review Boards (IRBs) at
all three sites.
Participants
We targeted individuals who were at least 21 years old,
fluent in English, capable of written informed consent,
had a diagnosis of a gastrointestinal condition (specifi-
cally IBD or IBS), and received care within the past two
years at one of the study sites. We included all patients
with varying degrees of severity for both IBS and IBD;
however we did not track participants by their condition
severity. Purposeful sampling strategies were tailored for
each site and included direct recruitment by clinicians,
mailings, and flyer advertisements. Participants’ provided
their diagnoses; we did not obtain them from medical
charts. This resulted in a total of 8 participants who
reported a chronic GI condition other than IBD or IBS:
two individuals reported a diagnosis of small intestinal
bacterial overgrowth, one reported a diagnosis of Clos-
tridium difficile, and five reported that they had not
received official diagnoses to date (Table 1).
Data collection and management
All participants completed an anonymous demographics
questionnaire immediately prior to each focus group.
Each focus group was facilitated by a moderator and co-
moderator using a semi-structured guide of open-ended
questions developed collaboratively by all study site
investigators. Moderators adapted questions as needed
to facilitate a robust conversation among participants,
while making sure specific topic areas were addressed.
Categories of discussion raised in the moderator’s guide
included participants’ baseline familiarity with probio-
tics; sources of information on probiotics; acceptance of
probiotics as alternative treatments for IBD/IBS symp-
toms; beliefs about the therapeutic potential of probio-
tics for IBD/IBS; willingness to participate in probiotic
research; and opinions about bioengineered probiotics.
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Prompts were also used to better understand our parti-
cipants day to day dealings with their chronic GI condi-
tions; these were general questions and were not based
on either the IBS or IBD qualitative of life question-
naires. All discussions were audio-recorded, transcribed,
and de-identified. Moderators at each site utilized the
semi-structured nature of focus group methodology to
facilitate the conversations.
Analytic approach
The study team members from all three sites created a
coding scheme reflecting the preliminary reviews of the
transcripts. Although not a primary objective of the
study, one code extracted from the interviews was titled
“the patient experience,” which broke down further into
the subcodes: “patient identity,” “experiences with medi-
cations,” and “lifestyle adaptations.” The final coding
scheme was determined by the complete team through
an iterative process. The development of the coding
scheme and subsequent coding were based on the
approaches of grounded theory and inductive qualitative
analysis, which allowed themes we did not anticipate to
emerge from the data [31]. Two team members analyzed
all transcripts independently using the final scheme, and
discrepancies in coding were resolved through consen-
sus. We then compiled the coded text for further narra-
tive and manuscript development. We used QSR NVivo
8 qualitative data analysis software [32].
Results
Focus group participants represented a range of ages
and educational levels. Two-thirds were female and
nearly 95% were white. Complete demographic details
have been previously reported [30] and Table 1 is repro-
duced here. Here we report on dialogue that pertained
to participants’ experiences along the GI disease journey
in the context of this larger study.
As they engaged in the focus group discussions, parti-
cipants portrayed a world revolving around identity,
medications, and adaptations to discover and control
what triggers flare-ups. Below we summarize partici-
pants’ comments on several broad themes including
identity, dealing with medication, and adaptations.
Identity: Person and disease
The Existential: “I wonder why we were the chosen ones?”
According to these participants, getting the diagnosis of
IBD or IBS can dramatically change one’s life on an
existential level, creating reasons to reflect and question,
“How did this happen” and “What went wrong?” While
striving to be normal, participants also spoke openly
about feeling painfully distinguished from others:
“I think what makes it so hard is like, when you are
sitting down with your family, and you’re basically all
Table 1 Characteristics of Patients (n = 136)
Age mean ± SD years (range)48 ± 16(21-88)
n(%)
Gender
Female 91 (67)
Male 45(33)
Education
Less than high school3(2)
High school/GED23(17)
Community college34(25)
Four-year college43(32)
Graduate school 28(21)
Professional school 5(4)
Income*
Less than $15,00011(8)
$15,001-35,00017(13)
$35,001-55,00027(21)
$55,001-75,00023(18)
$75,001-100,000 25 (19)
Over $100,00028(21)
Ethnicity*
Non-Hispanic127(96)
Hispanic5 (4)
Race*
White or Caucasian126 (93)
Black or African American4 (3)
American Indian or Alaska Native1 (1)
Asian1 (1)
Multi-racial3 (2)
Self-Reported Diagnosis*
Crohn’s Disease 47(35)
Ulcerative Colitis 33(24)
Pouchitis6 (5)
Indeterminate IBD3(2)
Irritable Bowel Syndrome 38(28)
Other/unknown diagnosis**8 (6)
Health Insurance*
Yes128(96)
No6 (4)
Previous participation in research*
Yes 64(47)
No71 (53)
Patients across clinical sites
Cleveland Clinic55(40)
Mayo Clinic 53(39)
Johns Hopkins28(21)
* Some patients did not provide this information
** Two patients reported a diagnosis of small intestinal bacterial overgrowth
and one reported a diagnosis of Clostridium difficile. Five patients reported
they had no diagnosis to date
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from the same gene pool, and you see that everybody
else at that table can eat all of these other foods, and
you are the one that can’t. You’re like ‘What’s wrong
with me? Why can’t I be like my sister or my brother or
other family members? Why did I get this one?’” (Site
A, FG #8)
This participant struggled not only with the practical
implications of her disease, but with questions of mean-
ing and fate, asking ‘Why me?’ and, by extension, ‘Why
this [horrid] disease?’
Shame and Self-Worth: “It’s almost like... you’re
insignificant.”
Participants spoke in vivid terms about how dealing with
their symptoms in social situations can provoke shame.
One participant described belching and flatulence and
worrying about making what many consider unseemly
bodily noises in public:
“I mean I would love to know that I could have a
conversation with somebody without the fear of
burping in their face, you know? Or watching a
movie or something or being somewhere really ele-
gant and nice and here I am belching like I have just
drunken twelve beers and I have got nothing but gas
in my stomach and yeah, ... I would like to ... know I
can have a drink... To know I can go and eat that
without worrying ‘oh my gosh is this going to affect
me in a little while? Am I going to be crying my
eyes out because my chest hurts so bad from acid
reflux?’” (Site C, FG #3)
This shame and humiliation may weigh heavily on
participants’ senses of self-worth and confidence.
Another participant reflected openly on these feelings:
“It’s almost like... I don’t know who believes in God or
what or what God you believe in, but it’s almost like,
you’re like... you’re insignificant.” (Site A, FG #6) These
quotes illustrate the depth of the impact these illnesses
can have on emotions such as shame and the resulting
implications of those feelings on notions of self-worth
particularly related to symptoms of chronic GI illness.
Although most participants were quick to dismiss the
notion that their chronic GI illness would define them,
they also acknowledged the reality that these conditions
were very much a part of their personal identities, caus-
ing many to ask ‘Why me?’ Participants expressed a
high degree of motivation to identify ways to live and
function in a world that presents many challenges to
managing their gastrointestinal condition, such as the
pressure to live ‘on the go,’ and the many social gather-
ings, interactions, and events that center on food. The
impact these conditions had on participants’ notions of
identity revolved around several specific dimensions of
how an individual interacts with his or her disease: the
existential, shame and self-worth, and what it took to
name the problem.
Naming the Problem: “... you know, ‘it was all in my head’”
Participants also wrestled with the meaning of their ill-
ness not only in terms of personal identity, but also
their identity as a patient with a particular condition.
Answering the question of “what is actually happening
to me?” regardless of etiology, seemed to be essential
to their illness experience. For some participants, the
difficulty of convincing their physicians to take their
bowel symptoms seriously extended their frustration
and demoralization beyond the symptoms themselves.
Often, participants conveyed a diagnosis experience
wherein a mental rather than physical etiology was
suggested by clinicians, sometimes in conjunction with
a general dismissal of symptoms that led up to their
diagnosis:
“First of all, I was diagnosed by a Navy doctor. He
said it was in my head and I needed to see a shrink.
It’s not in my head; trust me! It’s coming out some-
place else!” (Site B, FG #3)
The prolonged time it took to reach a diagnosis
resulted in many visits with numerous doctors and
much uncertainty:
“Well, I mean personally, since I was a little kid, you
go from doctor to doctor and they just guess what’s
wrong with you. Or they, ‘well, let’s try this medi-
cine,’ and ‘we don’t really know if it’s this or not so
let’s try this.’” (Site C, FG #1)
Some perceived that their doctors’ collective uncer-
tainty had transformed them into clinical guinea pigs in
which little more than a trial and error process was
used to address symptoms without a clear diagnosis.
Thus, for many, identifying the problem, being diag-
nosed with a condition, and given a label with a specific
name was like getting a map and compass to start the
journey of life with a chronic GI condition.
“Well, I know when I finally found out I had IBS
because I think that I had been plagued by discom-
fort in my side and I can remember getting up like
at three in the morning and Googling, trying to fig-
ure out what was going on, ‘cause it was never pain,
but it was discomfort, and being so relieved when I
found out (no pun intended) what it was.” (Site B,
FG #4)
Although physicians have been cautioned about the
dangers of giving patients disease “labels,” [33] to name
the cause of their symptoms was liberating for partici-
pants in the sense that what has a name can be
researched, treated, and managed.
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The varying notions and ideas participants themselves
had heard about the possible etiologies of their condi-
tions and the ways to ease symptoms, rumors of medi-
cations and their side effects seemed to further
compound the accumulated frustrations, self-doubt, and
feelings of stigma early in their illness journey. By com-
ing to terms with what their illness was and what it
meant for them, many participants could begin to more
confidently seek solutions in the form of medications or
other strategies.
Medications: What tonic works for you?
Many participants described desperation and depen-
dency on their doctors to give them whatever drug
they thought would help them feel more normal,
especially when they did not feel adequately edu-
cated about their GI condition:
“[The medication] was so new, and you just didn’t
know... the doctors knew everything, so, you know,
it was like... whatever you need to do to get me bet-
ter. That’s all.” (Site B, FG #1)
But for some, the side effects of the medications they
were prescribed turned out to be just as painful and
awkward as the original symptoms of their conditions.
It’s a Gamble
Participants expressed strong feelings about the side
effects of medications and distress in having to weigh both
the risks and benefits of prescribed medications with the
potential for even worse treatment options. Anti-tumor
necrosis factor drugs were one drug class that was fre-
quently discussed by participants who reported to have
IDB-both by those for whom the drug was successful and
those for whom it was not. As one participant described,
“Well, [Infliximab] has been known to be a Godsend
for a lot of Crohn’s patients. I mean, just look at all
of you at the table. But it did not work for me, at
all. I had some horrible almost instant side effects
from it.” (Site B, FG #6)
Another participant had a different perspective:
“The only reason that I take it is because I’m afraid
not to. And I realize that I’m increasing my risk of
cancer but.... my increased risk is less problematic to
me than increasing my risk of having to have ... my
intestines cut out .... but I would love not to take
medication.” (Site C, FG #2)
Some participants said they avoid taking medications
because of the unknown risks and long-term conse-
quences:
“I kind of like to avoid taking something all the time
for something that I feel that I can manage. Because
you seem to open a Pandora’s box once you go
down the medication road.” (Site B, FG #6)
Others found ‘gambling’ with medication an unfair
game–the odds of success as difficult to predict as a
roll of the dice: “[Medications] are a crapshoot
‘cause what works for one person doesn’t work for
another.” (Site A, FG #7) Another conveyed the
jaded outlook of someone who has tried many medi-
cations over the years and is now skeptical of the
hope for a ‘cure.’ He was hesitant to try new medica-
tions, and as such attested that there is no sure
thing:
“I mean like if you have a syringe of some magic
potion that is gonna make me not go to the bath-
room 20 times during the day and then have four
accidents at night, and you have a label on it that
says “guaranteed,” I’m all for it. But if it says 50/50,
nah... I don’t want to leave it to fate.” (Site A, FG #1)
That desire for a sure thing, combined with skepticism
that a sure thing does or will ever exist, created a recur-
ring tension for participants.
Others seemed to manage, although reluctantly, the
unpleasantness that could accompany the benefits of
their medications. One participant traded flare-ups
for a nasty rash:
“And it’s just like a vicious cycle. That triggers
something else and then, so then maybe my Crohn’s
is fine, but now I’ve got all these pimple-like sores
that itch like I feel like I’m sitting in a patch of poi-
son ivy. So then I deal with that!” (Site B, FG #5)
Seeking a life without symptoms and side effects did
lead some to experiment with treatments outside the
realm of conventional medicine without informing
their health care team. As this participant said,
“I’ve seen over 30 doctors already and enough of
them shot me the evil eye when I mentioned trying
this, that, or the other outside of strict... so I tend to
play my Russian roulette on the side and not neces-
sarily talk to them about it.” (Site B, FG #5)
When describing experiences with medications and
making decisions about what to take, participants used
terminology that captured fear and uncertainty of suc-
cess in treating their illness. Yet these ‘games of chance’
are played out of desperation, in the hope that some-
thing-anything-will be effective.
Autonomy
While participants wanted to reclaim control over their
lives to feel more normal, each seemed to have his own
threshold for what risks he was willing to take with
medications. Though doctors could provide data and
experience to help inform decisions, ultimately, the
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choice for what they were willing to tolerate, though
guided by physicians, was theirs:
“... I went on the web and read about it [drug] and it
seems like whatever you look at is going to have the
pros and cons but it would say, ... ‘these are the pos-
sible side effects which could be fatal... which could
be fatal!’ And I was like, and this is what my doctor
is suggesting to me?! But, then, of course, it’s my
decision. But I’m using my doctor to guide me.”
(Site B, FG #3)
Participants also mentioned their struggles with the
possibility of death as a potential outcome of a
medication:
“And so in the article it admitted that there is a one
to two percent chance of death... And I was thinking
to myself you know, like exciting as that is for me,
I’m not willing to take a one to two percent chance
of dying. Like my life isn’t so bad that I would be
willing to have that high a risk.” (Site C, FG #2)
The threshold for what side effects an individual was
willing to accept seemed contextually dependent upon
how poor they perceived life to currently be with the GI
symptoms. For most, current quality of life appeared to
be an important factor when determining what level of
risk they were willing to accept.
The burden of choosing a particular course of treat-
ment was noted by many participants, who
expressed ambivalence advice they had received
from the medical community. The following
exchange in one focus group portrays frustration
over taking multiple medications:
Participant 1: “I’m on so many meds now, I just
don’t want...”
Participant 2: “... I flushed [my medications] down
the toilet!”
Participant 3: “But, kind of the modern way is give
medication. Medicate, medicate, medicate!”
Participant 4: “Yeah, yeah, and ‘we’ve got something
for when this happens.’ And, ‘if this happens we’ll
give you this for that!’” (Site B, FG #2)
While some participants had reached a level of sim-
ply not wanting any more drugs, others perceived
that their problems were the result of drug interac-
tions caused by a lack of communication between
multiple physicians, as this individual discussed:
“My internist had me on a medication for one pro-
blem I have. And then my gastrointestinal doctor
finally convinced me to take another one. And
between the two of them, they were hard on your
liver... and you are like okay, what do I take? Do I
take the medication that the internist wants me,
which is supposed to help with one thing, or do I
want to take the one for the digestive, so maybe I
can eat? So, you rule... it is like ‘okay, sorry, inter-
nist,’ you go,
I want to be able to eat.’” (Site A, FG #8)
Somewhat paradoxically, participants wanted the free-
dom to try something-anything-to make them feel bet-
ter, but at the same time were acutely aware of the
potential toxic effects of choosing a particular tonic or
combination of tonics. The cost in bodily harm from
medications weighed heavily in how participants thought
they should or would exercise their autonomy and were
compounded by challenges with monetary costs, as dis-
cussed below.
A Great Expense: “And the money too. .. I’ve spent a
fortune on medication”
The expense of prescription medications was an issue
raised frequently by participants. As one participant
explained, “Cost is a factor for me... And I’m a single
mom and been getting social security. I mean, I have no
extra money.” (Site B, FG #2) In another example, parti-
cipants described their astonishment upon discovering
how much a medication was going to cost, as though
their pharmacist was telling them an absurd joke:
Participant 1: “I can’t remember the name of [drug]...
but I remember it was so expensive and I was like,
‘Hi honey, I need to refill my prescription.’ ‘How
much?!’ My co-pay was... like $375 or something,
but still! That was only a month’s supply!”
Participant 2: “$375 a month. I don’t make that
much as a vet tech! [Laughter]” (Site B, FG #2)
Adaptations: Learning survival skills
The challenges of living with a chronic GI condition
also led participants to develop and adopt steps for
basic daily survival. In the following examples, partici-
pants shared how they sought to reestablish what they
considered to be a normal life.
Balance
Participants frequently shared their experiences
being “in balance” and “out of balance” and
described how delicate that balance can be. One par-
ticipant reflected on how she attempts to find and
maintain balance:
“Sometimes you feel like you are spinning a bunch of
plates trying to find alignment of everything... So it is
kind of like this little fine line and if you don’t balance
it quite right it sends you over.” (Site A, FG #8)
Maintaining balance was clearly the goal of all our
participants, however that balance might be achieved.
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As this participant aptly summarized, “You figure out
what works for you, and we’re all different.” (Site B, FG
#4) For some, what “worked” was daily yoga followed by
a glass of prune juice and cup of herbal tea. For others,
the equilibrium was facilitated by prescription drugs.
A common cause of imbalance noted by participants
was stress. Many could pin-point where and when
stress was most likely to occur and attempt to “be on
guard.” Food was also a common source of imbalance
resulting in flare-ups, and therefore something to be
monitored with vigilance. Thus, maintaining or regain-
ing balance required a cocktail of drugs and modes of
self-management (including stress-management and
diet-monitoring) to allow that desired state of balance
to prevail.
What Goes In Must Come Out: “be careful what you eat...
because if you don’t, you pay.”
Food prevailed in all discussions as the one key element
that could be used to control-or attempt to control-
symptoms. Some said that “triggers” were often identifi-
able (e.g. certain foods or certain situations), but many
participants also highlighted the unpredictable nature of
the effects of their diet: “It’s so different. I could be
good one day and the next day I’m not. I eat right and
then I’m bad.” (Site B, FG #3)
The ambiguity of what might be a trigger was a sig-
nificant source of stress for many participants, with
some seeking to find strategies to successfully handle
the uncertainty and its potential repercussions. In
order to deal with the uncertainty, participants
exhibited great vigilance in monitoring what went in
and out of their bodies:
“Unless you’re growing your own vegetables and
your own cows and doing your own thing, that’s the
only way you really know what you’re eating. Half of
the time you don’t know what you’re getting in pro-
cessed food or if you’re eating out, or, you don’t
know... It could be, you ate this one diet 3 years ago
and now the same diet is making you sick. Well,
what’s changed? Is it processed differently? Are the
vegetables from a different place? Or, you know,
there are so many factors and so many variables it is
really hard to pinpoint anything.” (Site B, FG #2)
Many talked about “healthy” foods or ways of eating.
Active management of one’s diet was an essential strat-
egy, as described here: “So I think that’s one of the main
things that I can do for myself is just have a healthy
diet.” (Site B, FG #6) However, the work involved in
finding the “right” diet often came at the expense of
much trial and error: “You just be careful what you eat,
what you drink, and you learn your own body and you
learn to respect the signs, because if you don’t, you
pay.” (Site B, FG #6) This attention, or hyper vigilance,
also extended to a variety of lifestyle strategies.
Bathroom Mapping and Avoiding Social Stigma: “I am
always afraid to be too far from the bathroom.”
Bathroom mapping was the most common survival skill
observed across the focus groups, with participants con-
fessing to being familiar with the location of every bath-
room in their workplace, the routes they drove
regularly, and the shopping centers they frequented.
“Well, I’ll tell you something. I know where every bath-
room in [this city] is.” (Site A, FG #6)
In addition to knowing where bathrooms were located,
some, to avoid social stigma, had also discovered the
public places in which they felt the least conspicuous.
This participant shared his secret with the others:
“Grocery stores are good for bathrooms. It’s non-
committal. You just go in, they always have one and
... you don’t have to ... act like you are buying a
cheeseburger that you’re not going to eat.” [Laugh-
ter] (Site A, FG #6)
Many felt they were unable to venture too far into
areas in which access to bathrooms was very limited
due to the urgency of bowel movements and the stigma-
tizing consequences of that reality.
Even when access to bathrooms was not a problem,
participants reported other perils to face within particu-
lar social settings: “We’re living dormitory style so, you
know, if you have to make it to the bathroom, you hope
nobody else is in there when you get there [Laughs].”
(Site B, FG #6) Suffering from an illness that causes fre-
quent bowel movements has other socially stigmatizing
consequences as well, described by one participant in a
story about her insecurities disclosing her illness early
on in a relationship:
“When I first was dating my husband, I didn’t want
to let on that I had this and I can remember the
first time we went up north together... anywhere we
went I used the restroom in the hopes that when I
got back to where we were staying I wouldn’t have
to [Chuckles].” (Site B, FG #6)
Avoiding locations and social functions without bath-
room facilities was a major survival strategy for most
participants. Yet even with this and all of the other chal-
lenges participants described about learning to live with
IBD or IBS, their humor and resilience in the face of
such challenges were prominent characteristics.
It’s All About Your Attitude: “It may be something I deal
with all of my life, but I can do this.”
Participants openly shared strategies that they use to
manage the many personal burdens of their disease. As
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one participant revealed, “And, frankly, when I’m out in
public, as I am today, I put on a Depends. I can go
through a whole day without any casualty [Laughter]."(-
Site A, FG #6) Another talked about how she conquered
the obstacle that could have kept her from enjoying a
favorite hobby, hiking: “I had to take the shovel and go
dig a hole in the woods! [Laughter] I’m not going to
give up hiking!” (Site B, FG #6)
Several participants discussed their diligence in plan-
ning the timing of eating and drinking when wanting
to attend a social function, conveying not only a
general mode of adaptation but also a proactive
orientation in the midst of illness. Here one partici-
pant talks about how she gets around what she
referred to as the “really far reaching” social aspects
of disease:
“I mean ... you get to where you start thinking, ‘No, I
can’t eat this now because at 6:00 this evening I have
to be at this function and if I am at this function I
don’t want to be trotting off to the bathroom every
five minutes or be afraid that I am going to pass gas
in a social environment.’ [Laughter]” (Site C, FG #4)
Employment created further challenges for many
participants in terms of adapting to their workplace
environment. For those with desk jobs, creative solu-
tions to dealing with cramps and abdominal discom-
fort were necessary. This participant shared her
solution and was able to make light of the whole
situation:
“Sometimes it becomes difficult to keep sitting, and
I’m in a job where I have to sit, so they’ll [my collea-
gues] see me on my knees operating my laptop... and
they’ll be like what are you doing? ‘I’m just praying
to the computer.’ [Laughter] You come up with all
of these little different things...” (Site A, FG #8)
In summary, participants repeatedly expressed their
resilience and determination not to allow their chronic
GI conditions to interfere with opportunities to enjoy
life, often using humor as a coping mechanism. The
idea of “hey, it really could be worse” was evident, cap-
tured particularly well by one participant who stated, “I
mean, it’s pretty lucky compared to some other pro-
blems that you can have that aren’t manageable...” (Site
B, FG #4) Being able to “manage this,” “do this,” and
“figure out what kind of tonic works for me” was a con-
fidence expressed by many participants.
Discussion
The journey traversed from pre-diagnosis, to diagnosis,
to treatment and living with side effects and symptoms,
is different for every individual with a chronic illness.
Yet, as our study demonstrates, important and recurrent
themes emerge when individuals with chronic GI condi-
tions describe their illness journeys in the company of
others who share similar experiences. These focus
groups reveal important insights about the impact of ill-
ness on their lives. Namely, these groups provided a safe
forum in which individuals with chronic GI conditions
could raise and openly discuss concerns at length and
without time constraints. Given the often taboo topics
discussed, participants seemed grateful for the opportu-
nity to ‘let it all out’ among others that could relate. As
one participant put it:
“It’s great to meet other people who have gone
through what I have gone through. You know what I
mean? I’m not alone. Yes you’ve got people online,
but actually to physically see somebody in a room, it
makes me feel like, ‘God, I’m okay.’”
The themes discussed above have several overarching
implications for clinicians. Threaded throughout our
findings are the opposing notions of uncertainty and con-
trol. Trying to balance uncertainty about what the future
holds, what exactly their diagnosis is, how to manage
their symptoms, which medication to take, and which
foods to avoid, with the desire to maintain some sem-
blance of a “normal” daily life were challenges articulated
by our participants in a variety of ways. Each of the
themes we describe evolved from participants talking
about how they struggle with feelings of uncertainty and
the strategies they develop to control uncertainty. We
interpreted these strategies as coping mechanisms that
enabled a sense of control or empowerment. Having a
cohesive explanation, a story for one’s illness, is a critical
aspect of living with chronic GI illness.
Medication selection is central to how many of our
participants attempt to control their symptoms and
flare-ups. The pros and cons, the possible harms and
predicted benefits, are topics that some of our partici-
pants struggled with physically as well as intellectually
when thinking about whether to take the drug or even
continue with it. Participants hoped that the physical
and emotional burdens of living with a chronic GI con-
dition will be alleviated with medications. However,
there appears to be two sides of the coin when it comes
to medication–one offering potential benefit, perhaps
the promise of a cure, the other, harm. Participants
were cognizant of this tension and spoke of their experi-
ences with medication using literary metaphors such as
“Pandora’s box”, or gambling analogies, such as “Russian
roulette” and “crapshoot.” This in-depth examination of
participants’ voices reminds us that medications often
can create unsettling uncertainties and significant finan-
cial burdens that clinicians may not always fully appreci-
ate as they work to help patients manage their illness.
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Hyper-vigilance about food and diet was also evident
among our study participants. As food is often the cen-
ter of social encounters-from parties, to dinner with
family, to work-related eating gatherings-avoidance and
adaption strategies in the context of meals were critical
for individuals with chronic GI conditions to “fit in” and
actively participate socially. This, along with “bathroom
mapping,” highlights how hyper-vigilance about one’s
personal environment creates social tensions for indivi-
duals with chronic GI illness. On the one hand, reli-
giously-followed “food rituals” help to stabilize their
condition, yet on the other, they can greatly conflict
with IBS/IBD patients’ attempts to live a normal life.
Prior studies of patients with IBS have helped to iden-
tify factors that affect GI patients’ quality of life. Bertram
et al 2001 found intense frustration and isolation among
his patients [22]. Like participants in our study, they
were commonly frustrated by an inability to control
symptoms, the need to immediately access toilet facil-
ities, the struggle to understand what triggered an epi-
sode, and having to withdraw from social activities.
Nearly ten years later, Drossman et al found that IBS
patients described uncertainty of symptom trigger and
unpredictability of symptom occurrence, loss of free-
dom, and feelings of stigma and embarrassment asso-
ciated with their disease. Many of these patients felt
misunderstood by friends, family, and health care provi-
ders [23]. Similar themes feature prominently in “I am
Doing the Best That I Can Do!”, a series of publications
that tells the personal stories of six IBS and two UC
female patients [24-26]. Our data build upon these ear-
lier findings by articulating both positive as well as
negative dimensions of patient experiences from a geo-
graphically broad and diagnostically diverse group. In
addition, the many burdens of living with IBD/IBS may
not be immediately evident to clinicians-perhaps
because of the stigma and personal impact we describe.
We posit that structuring health care encounters in
which a patient-clinician relationship that supports
meaningful expression of personal experiences of disease
could lead to better symptom management for patients
with chronic disease.
This study has several limitations. Although we strove
to recruit members from under-represented racial and
ethnic groups, participants were largely of European
descent. These factors limit the generalizability of our
findings, as does our mode of data collection. Recogniz-
ing the limits of focus group methodology, we chose
this approach because it does enable the emergence of
topics and themes that may not otherwise come out. No
one research team member moderated all of the focus
groups, which may have limited uniformity in how ques-
tions were posed. However, because our findings span
all 22 focus group discussions, we view this as strong
support for our conclusions.
Since the lived experience themes emerged from the
data during analysis and were not a main aim of the
parent study, we did not transcribe audio recordings
such that GI condition of individual participants was
noted when each spoke. What is interesting is that the
reflections on the lived experience were not remarkably
variant, even while the diagnoses in any given focus
group may have been. Regardless of the self-reported
condition, our participants shared similar stories about
living with a chronic GI disorder. We acknowledge it as
a methodological limitation, but also believe it is, in
itself, an interesting finding.
Finally, the original objective of our focus groups was
to assess how individuals with IBD or IBS view probio-
tics, not to examine their disease experience. Operating
within the framework of this main objective may have
limited opportunities for further follow-up on some dis-
cussion points that were raised. Nevertheless, we believe
that the fact that stories about illness experiences arose
even in the context of probiotics supports our conclu-
sions that the encounters we heard about living with
IBD or IBS are very prominent in the daily lives of these
individuals. Future studies may benefit from exploring
differences across different chronic GI conditions.
The themes we have identified and described-issues of
identity in chronic GI illness, medication as a double-
edged sword, and survival strategies including hyper-vig-
ilance about one’s diet and bathroom mapping-highlight
several major determinants affecting the quality of life
experienced by persons with chronic GI disease. Because
these matters can be difficult or uncomfortable to talk
about during routine clinic visits (and may, as such, be
understated in such settings), the data we report offer
important insights into how individuals with chronic GI
illness navigate daily life. Our findings, drawn from
three large academic medical centers, indicate a need to
expand and refresh a truly patient-centered appreciation
of the full illness experience for patients with GI illness.
Conclusion
This study provided an opportunity to let the person
with chronic GI illness shine through. If we wish to
establish a truly patient-centered visit for chronic GI
patients, care teams will need to re-think how each indi-
vidual patient’s story is shared with the healthcare team
and used to develop a personalized treatment plan. In
such visits, not so dissimilar from the focus groups
reported here, patients could gather, share, learn, and
interact with skilled, empathic clinicians. The conversa-
tions might reveal that for some patients, cognitive
behavior therapy (CBT) would do just as much good as
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additional pharmaceuticals. Such a model might help to
capture the depth and richness of the patient experience
while acknowledging the many practical demands and
time constraints of contemporary medical practice. The
need to engage each patient as a unique individual with
his or her own rich set of life experiences is as critical
today as it was over a century ago when William Osler
reminded us that, “It is as important to know the person
who has the disease as it is to know the disease the per-
son has.”
Acknowledgements
This work was funded by grant number R01HG004877 from the National
Human Genome Research Institute. We appreciate the efforts and
contributions of Margaret Breslin, Margaret Brinich, Krista Harrison, Debra
Jewell, and Patricia Marshall in helping to make this study possible. We also
thank the study participants who generously gave their time to share their
experiences and opinions with us.
Author details
1Division of Internal Medicine, Mayo Clinic, Rochester, MN, USA.2Mayo
Medical School, College of Medicine, Rochester, MN, USA.3Department of
Obstetrics and Gynecology, Cleveland Clinic, Cleveland, OH, USA.
4Bloomberg School of Public Health, Johns Hopkins University, Baltimore,
MD, USA.5Biomedical Ethics Research Unit, Mayo Clinic, Rochester, MN, USA.
6Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, MN,
USA.7Department of Bioethics, Cleveland Clinic, Cleveland, OH, USA.
8Plummer 3, Mayo Clinic, 200 First Street SW, Rochester, MN 55905, USA.
Authors’ contributions
JBM contributed to study design, data collection, data analysis, and drafting
of the manuscript. RRH contributed to data analysis and drafting of the
manuscript. RMF conceived of the study and participated in its design,
coordination, and data analysis. GG contributed to study design and
coordination, data collection, data analysis, and critical revision of the
manuscript. KMJ contributed to data collection, data analysis, and revision of
the manuscript. EVL contributed to study design and provided critical
revisions to the manuscript. MBM contributed to study design and
coordination, data collection, data analysis, and critical revisions of the
manuscript. JCT contributed to study design and coordination, data
collection, data analysis, and critical revision of the manuscript. RRS
conceived of the study and participated in its design and coordination, data
analysis, and critical revisions of the manuscript. All authors read and
approved the final manuscript.
Competing interests
The authors declare that they have no competing interests.
Received: 15 September 2011 Accepted: 8 March 2012
Published: 8 March 2012
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doi:10.1186/1477-7525-10-25
Cite this article as: McCormick et al.: Experiences of patients with
chronic gastrointestinal conditions: in their own words. Health and
Quality of Life Outcomes 2012 10:25.
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