Susan Bertram, RN, MSN

Irritable bowel syndrome (IBS) is a gastrointestinal problem estimated to affect 9% to 22% of the US population.^1-4 Recent studies suggest that although IBS symptoms are frequent in the community population,⁵ and those who do often discontinue care⁶ after receiving the diagnosis, despite continuing symptoms.⁷

As a diagnosis of exclusion with no defined physiologic basis, IBS is not well understood by physicians or patients and often not considered significant by the medical community.^8-10 There are no specific treatments for IBS and no evidencebased treatment guidelines.^11,12 This chronic condition has periodic exacerbation over many years that may adversely affect quality of life, especially in the areas of social and sexual functioning,¹³ events best studied from the patients’ perspective. However, few studies of IBS include this important perspective, and those that do usually only sample patients attending gastroenterology clinics, a very small minority of all IBS patients.

To better understand the patient’s view of the longitudinal nature of IBS, the factors that have an impact on symptom initiation and severity, and the needs of IBS suffers, we held community-based focus groups of people with diagnosed IBS. We attempted to determine the types of symptoms they experience, the chronicity and nature of episodic events, accommodations in lifestyles, successful treatments used, and IBS patients’ perceptions concerning their health and health care. This information should be useful to primary care physicians who provide the majority of care for people with IBS.

Methods

We performed a qualitative study using focus groups of volunteers previously diagnosed with IBS. Focus groups were held between September 15 and December 1, 1999. The subjects were identified by posted notices in primary care areas of a multispecialty private practice and through announcements in the local newspaper and at the local IBS support group. We used a structured interview guide reflecting the research questions to elicit responses from participants. During focus group discussions, the moderator used broad open-ended questions that began with low-intensity issues and moved toward higher-intensity issues. Specific probes were provided and modified after each session to incorporate findings from previous group discussions in an iterative process. The questions were initially tested using subjects from the local IBS support group to assure the questions’ comprehensibility and comprehensiveness.

The focus group discussion concentrated on 5 areas of interest: (1) description of IBS symptoms and episodes, (2) episode triggers and factors affecting the duration of episodes, (3) treatments used, (4) lifestyle changes due to IBS, and (5) experiences interfacing with the health care system. These areas of interest were selected on the basis of the existing literature^14-16 and gaps in the literature identified from the researchers’ clinical experience and previous work on IBS.^6,7,15*

Two trained research nurse co-facilitators led each focus group discussion. The master’s-prepared psychiatric nurse with extensive experience in group work led the group discussion, while a registered nurse experienced in focus groups served as an observer and recorder of content and nonverbal behavior. At the focus group meetings, the participants were welcomed and introduced using only first names. Time was spent informing participants of the group’s purpose and length, confidentiality issues and audiotaping, and that there were no right or wrong answers. It was stressed that the purpose of the sessions was to learn about participants’ experiences and opinions and not to attempt to reach a consensus about IBS. The 7 groups of 5 to 10 volunteers each met for 1 hour. After participants consented, the conversation was audiotaped and later transcribed verbatim. At the end of the session, the participants received a $25 honorarium for their time and travel.

Data Analysis

The 2 facilitators met immediately after each focus group to discuss the content of the discussion and to modify probes as necessary. The facilitators and one of the physician coinvestigators (BPY) initially developed summaries of responses to the questions of interest. They then read and reread the typed transcripts and group notes, sifting through the information, highlighting key statements, and looking for patterns and connections to identify dominant themes or concerns. This is known as immersion/crystallization.¹⁷ The researchers then met to review written emerging themes. In this process, each interpreter made connections of ideas and themes through an ongoing spiral of first organizing the data alone and then by corroborating it with the other interpreters. The process of crystallization occurred after several months of deliberations. We present summaries of answers to questions of interest and participant quotations to illustrate dominant themes that emerged in the crystallization process.

Results

Fifty-one volunteers participated (43 women and 8 men; age range=16-72 years). The occupations of the participants included: student, cook, teacher, health aide, musician, self-employed, office worker, chief executive officer of a small company, retired person, and clergy. Most participants were primary care patients and described being followed up medically by their usual physician for IBS symptoms before and after diagnosis.

Symptoms. Abdominal cramping and diarrhea caused most people with IBS to seek medical care. The symptoms often triggered a fear of serious disease, especially cancer. The symptoms were perceived as severe and limiting to the daily routine. Descriptions of abdominal pain were vivid, and participants consistently affirmed that the pain was not ordinary. The diarrhea was described as urgent and explosive. The sense of urgency that accompanies bouts of diarrhea and the inability to plan the day without taking into consideration the need for proximity to a bathroom was often frustrating. Bloating and constipation also occurred but were considered less disruptive of their lives. Participants often searched to find an etiology for their illness, linking the initial occurrence of symptoms with a specific event, such as a hernia or gallbladder operation, food poisoning, or even a cat bite.

IBS symptoms began at various ages, though most subjects were in their mid-teens to mid-30s when they sought help for the first time. Some were able to relate symptoms going back to early childhood. Many noted that constipation was a frequent problem during their preschool and elementary years and visits to physicians for constipation relief during childhood were not uncommon. Several participants said that they had been colicky babies and associated this experience with their IBS.

Episodes. The participants viewed IBS as a chronic disease that affects their lives on a daily basis. Although the symptoms were usually episodic, occurring weekly to monthly and lasting hours to a few days, anticipation of the next episode affected the person between episodes.

Stress and foods were considered common but unpredictable triggers of symptom episodes. Although all participants could identify possible stressors contributing to their symptoms, they universally believed that they had little control over these stressful occasions. Foods that could be eaten without adverse affect at one time triggered severe symptoms at other times. This variable response to potential triggers was a source of great frustration to the participants.

Treatment. Self-regulated symptomatic treatment was common: using an antidiarrheal drug when an episode of diarrhea began or fiber and bran in response to constipation. Prophylactic use of antidiarrheal medications during work or before important social situations was common. Use of antidepressant drugs for other reasons was noted to improve IBS symptoms. Despite lack of specific therapy, few participants used alternative health care providers or naturopathic remedies. IBS support groups were noted to be therapeutic.

Changes in lifestyle. Most participants reported they made significant changes in their work and social lives because of IBS. Overall, IBS was felt to decrease work productivity and adversely affect the quality of work due to large amounts of time spent in the bathroom. Work days were missed as often as once a month, mainly because of cramping or diarrhea.

Participants universally reported strained social situations because of the illness. Social situations become especially difficult when eating or traveling was involved. Most subjects said they simply avoid these situations by not participating in the social event or by not eating. Many refused social invitations for fear of an IBS episode and not having access to a bathroom. This causes great strain within the family unit.

Interface with the health care system. Medical help is sought in the diagnostic stages of IBS, but afterward most participants dealt with their symptoms on their own. Most felt that their physicians were not helpful with the illness. A sense of frustration with the medical community’s lack of empathic response, a lack of any helpful remedy, and a feeling of being taken lightly was commonplace.

Crystallization

Three overriding themes emerged from the focus groups responses: frustration, isolation, and a search for a niche in the health/sick role continuum Table 1.

Frustration. IBS sufferers displayed a sense of great frustration with the lack of control over their illness and daily lives. The unpredictability of IBS exacerbations, the severity of symptoms and the lack of understanding and empathy for their illness by family, coworkers, and physicians lead to feelings of disappointment, anger and frustration. Participants said: “It is triggered by anything, everything, nothing. It makes no sense”; “There is no control and people don’t understand that…no one can”; “All of a sudden it hits you. I’m afraid sometimes to get up and move”; “I haven’t noticed a pattern, and it’s frustrating”; “I think that part of the stress factor is the frustration of trying to figure out what’s coming next.”

The lack of an adequate medical explanation for IBS was frustrating for most, even though there was relief at the understanding that they did not have a serious medical disease. For some, the search for a cause of their IBS continued, and they explained their illness using life events that make sense for them. Participants viewed the illness as severe and greatly affecting their lives, and they believed that physicians did not give credence to the fact that they were ill. This perceived discrepancy caused them to see their physicians as unhelpful in dealing with IBS. One patient said: “There are medical people who think that it’s all in our head, and if they can’t come up with a diagnosis, it’s a wastebasket diagnosis.”

Frustration becomes a downward spiral triggering new episodes of symptoms leading to greater frustration and isolation. As one participant put it: “For me, my home…is not a very comfortable place, because my dad doesn’t understand this, and some of my family members don’t understand this.”

Isolation. The sense of isolation that participants felt was pervasive throughout the groups. Most felt apart from others, alone in their suffering, perceiving their symptoms as embarrassing and being unable or unwilling to discuss them with friends, families, and coworkers. Through group discussion, they were often surprised to learn of others’ similar episodes with IBS and felt an affirmation of their IBS experiences that they had not before experienced. One patient said: “I thought I was the only one in the whole world.”

Social events were difficult because of the perceived possibility of triggering an IBS episode and were often avoided because of frequent bathroom use, embarrassing occurrences of gas, abdominal pain, diarrhea, and even incontinence of stool. Isolation is further increased by the avoidance of social situations. Participants said: “I can’t go out to eat because I’m not sure what’s going to happen. I can’t go to family functions”; “You dread when somebody asks you to go somewhere, because you are afraid that you’re going to have a problem, and it’s going to affect everybody that you’re with”; “My family is always blaming me that I plan to have us not be able to go on vacation.”

Isolation in the workplace can also be enhanced when an IBS sufferer takes frequent bathroom breaks or must miss work because of abdominal pain. Coworkers’ unsympathetic responses toward the problem and frequent trips to the toilet increase the IBS suffers’ solitude. A participant said: “They (coworkers) complain a lot about me: ‘You’re just trying to get out of work’…that’s how they started teasing me, thinking I was just trying to skip out of work.”

Search for a niche. Participants viewed themselves as suffering from a chronic and sometimes debilitating illness. However, the message they received from the medical community was that there was nothing wrong with them. Nevertheless, the impact on daily life was considerable, and patients with IBS appeared to struggle to determine their place on the illness/wellness continuum. One patient said: “It is a waste of time to seek (help from a physician), because they say its just all in my head…they don’t want to deal with it.”

Even when feeling well, participants were concerned about the timing of their next episode. Thus, a great deal of energy was spent to avoid being ill. Participants said: “I try to get things stimulated in the morning so I can get it over with. It takes about an hour for the whole process because of the residual cramps,” and “I try to avoid certain foods.”

Discussion

These focus group volunteers were very willing to discuss their IBS symptoms and the ways their lives were affected by this illness. It seemed as if many were relieved to finally be able to discuss their problems and symptoms and to hear how others with similar difficulties fared. Quite a few were encouraged that their individual experiences with IBS problems paled in light of others’ difficulties with IBS.

People with IBS have experiences similar to those with other chronic conditions of uncertain etiology and ambiguous diagnostic criteria, such as fibromyalgia, chronic pain, and chronic fatigue. A phenomenalogic study of 22 women with fibromyalgia described 2 higher-order concepts called vulnerability and maintaining forces.¹⁸ The vulnerability was described in terms of feelings of helplessness similar to our theme of frustration. The maintaining forces dealt with ambiguous interaction with health professionals that described lack of recognition of the physical nature of this condition and symptoms. Other forces referred to family support and isolation. Studying a group of people with chronic fatigue, Clements and colleagues¹⁹ also reported an overlap of physical symptoms and stress over which sufferers have no control. They reported that coping with their condition requires avoiding activities and resultant isolation. Studying patients with chronic nonmalignant pain, Kelly and coworkers²⁰ described feelings of loss and the need to be understood and accepted that are similar to themes from our focus groups. The subjects from all 3 studies also affirmed the value of support group membership.

Our patients with IBS made specific suggestions to improve their interactions with physicians. More education about the nature of this illness at the time of diagnosis would be helpful to the IBS sufferer. Educating physicians about how IBS affects the lives of those who are plagued by this syndrome is paramount. An empathic response is warranted from health care workers, especially since this illness is so socially isolating. Because participants were frustrated by the social isolation of this illness, referral to an IBS support group could help decrease this sense of isolation and help the participants learn new coping methods. Although these focus groups were not therapy sessions, it was clear that many participants valued the group interaction and gained information about how others coped with their IBS. Most participants believed that their episodes were triggered largely by stress. They had difficulty determining how their stress could be minimized and, in general, most showed little understanding about stress management. Physicians should help their patients with IBS develop rational strategies for managing stress.

Limitations

The members of these focus groups were volunteers and may not be representative of the whole population. They may represent the more severe cases of IBS, those least likely to have found relief or those most dissatisfied with their health care. However, they were willing to call a nurse and participate in a hospital or clinicbased discussion. In addition, all subjects were white, which may not be representative of the United States culture at large or represent ethnic differences in the manifestation of the disease or the subjects’ solutions to their illness.

Conclusions

People with IBS view their illness as a chronic condition that is episodic in nature and triggered mainly by stressful events. They feel little control over the initiation, intensity, and duration of their episodes of illness, leading them to a feeling of frustration. They perceive their medical care providers as unsympathetic and of limited help in dealing with their disease. The gap between the patient and the physician’s perception of the nature, severity, and consequences of IBS appears to lead to frustration, isolation, and missed opportunities to improve the patient’s quality of life.

Related resources

For patients:

• IBS Self Help Group www.ibsgroup.org National IBS support group site. Offers information and chat rooms.
• HeliosHealth—Link to irritable bowel syndrome www.helioshealth.com/digestive/ibs Brochures, news and discussions.

For physicians:

• Advances in Irritable Bowel Syndrome www.conference-cast.com/ibs/ A lecture series that includes CME options.
• American Gastroenterology Association—Irritable Bowel Syndrome www.gastro.org/public/ibs.html This site addresses the types of IBS seen by GI specialty groups and includes guidelines for diagnosis.
• National Institute of Diabetes & Digestive & Kidney Diseases: Irritable Bowel Syndrome in Children http://www.niddk.nih.gov/health/digest/summary/ibskids/index.htm

Irritable bowel syndrome (IBS) is a gastrointestinal problem estimated to affect 9% to 22% of the US population.^1-4 Recent studies suggest that although IBS symptoms are frequent in the community population,⁵ and those who do often discontinue care⁶ after receiving the diagnosis, despite continuing symptoms.⁷

As a diagnosis of exclusion with no defined physiologic basis, IBS is not well understood by physicians or patients and often not considered significant by the medical community.^8-10 There are no specific treatments for IBS and no evidencebased treatment guidelines.^11,12 This chronic condition has periodic exacerbation over many years that may adversely affect quality of life, especially in the areas of social and sexual functioning,¹³ events best studied from the patients’ perspective. However, few studies of IBS include this important perspective, and those that do usually only sample patients attending gastroenterology clinics, a very small minority of all IBS patients.

To better understand the patient’s view of the longitudinal nature of IBS, the factors that have an impact on symptom initiation and severity, and the needs of IBS suffers, we held community-based focus groups of people with diagnosed IBS. We attempted to determine the types of symptoms they experience, the chronicity and nature of episodic events, accommodations in lifestyles, successful treatments used, and IBS patients’ perceptions concerning their health and health care. This information should be useful to primary care physicians who provide the majority of care for people with IBS.

Methods

We performed a qualitative study using focus groups of volunteers previously diagnosed with IBS. Focus groups were held between September 15 and December 1, 1999. The subjects were identified by posted notices in primary care areas of a multispecialty private practice and through announcements in the local newspaper and at the local IBS support group. We used a structured interview guide reflecting the research questions to elicit responses from participants. During focus group discussions, the moderator used broad open-ended questions that began with low-intensity issues and moved toward higher-intensity issues. Specific probes were provided and modified after each session to incorporate findings from previous group discussions in an iterative process. The questions were initially tested using subjects from the local IBS support group to assure the questions’ comprehensibility and comprehensiveness.

The focus group discussion concentrated on 5 areas of interest: (1) description of IBS symptoms and episodes, (2) episode triggers and factors affecting the duration of episodes, (3) treatments used, (4) lifestyle changes due to IBS, and (5) experiences interfacing with the health care system. These areas of interest were selected on the basis of the existing literature^14-16 and gaps in the literature identified from the researchers’ clinical experience and previous work on IBS.^6,7,15*

Two trained research nurse co-facilitators led each focus group discussion. The master’s-prepared psychiatric nurse with extensive experience in group work led the group discussion, while a registered nurse experienced in focus groups served as an observer and recorder of content and nonverbal behavior. At the focus group meetings, the participants were welcomed and introduced using only first names. Time was spent informing participants of the group’s purpose and length, confidentiality issues and audiotaping, and that there were no right or wrong answers. It was stressed that the purpose of the sessions was to learn about participants’ experiences and opinions and not to attempt to reach a consensus about IBS. The 7 groups of 5 to 10 volunteers each met for 1 hour. After participants consented, the conversation was audiotaped and later transcribed verbatim. At the end of the session, the participants received a $25 honorarium for their time and travel.

Data Analysis

The 2 facilitators met immediately after each focus group to discuss the content of the discussion and to modify probes as necessary. The facilitators and one of the physician coinvestigators (BPY) initially developed summaries of responses to the questions of interest. They then read and reread the typed transcripts and group notes, sifting through the information, highlighting key statements, and looking for patterns and connections to identify dominant themes or concerns. This is known as immersion/crystallization.¹⁷ The researchers then met to review written emerging themes. In this process, each interpreter made connections of ideas and themes through an ongoing spiral of first organizing the data alone and then by corroborating it with the other interpreters. The process of crystallization occurred after several months of deliberations. We present summaries of answers to questions of interest and participant quotations to illustrate dominant themes that emerged in the crystallization process.

Results

Fifty-one volunteers participated (43 women and 8 men; age range=16-72 years). The occupations of the participants included: student, cook, teacher, health aide, musician, self-employed, office worker, chief executive officer of a small company, retired person, and clergy. Most participants were primary care patients and described being followed up medically by their usual physician for IBS symptoms before and after diagnosis.

Symptoms. Abdominal cramping and diarrhea caused most people with IBS to seek medical care. The symptoms often triggered a fear of serious disease, especially cancer. The symptoms were perceived as severe and limiting to the daily routine. Descriptions of abdominal pain were vivid, and participants consistently affirmed that the pain was not ordinary. The diarrhea was described as urgent and explosive. The sense of urgency that accompanies bouts of diarrhea and the inability to plan the day without taking into consideration the need for proximity to a bathroom was often frustrating. Bloating and constipation also occurred but were considered less disruptive of their lives. Participants often searched to find an etiology for their illness, linking the initial occurrence of symptoms with a specific event, such as a hernia or gallbladder operation, food poisoning, or even a cat bite.

IBS symptoms began at various ages, though most subjects were in their mid-teens to mid-30s when they sought help for the first time. Some were able to relate symptoms going back to early childhood. Many noted that constipation was a frequent problem during their preschool and elementary years and visits to physicians for constipation relief during childhood were not uncommon. Several participants said that they had been colicky babies and associated this experience with their IBS.

Episodes. The participants viewed IBS as a chronic disease that affects their lives on a daily basis. Although the symptoms were usually episodic, occurring weekly to monthly and lasting hours to a few days, anticipation of the next episode affected the person between episodes.

Stress and foods were considered common but unpredictable triggers of symptom episodes. Although all participants could identify possible stressors contributing to their symptoms, they universally believed that they had little control over these stressful occasions. Foods that could be eaten without adverse affect at one time triggered severe symptoms at other times. This variable response to potential triggers was a source of great frustration to the participants.

Treatment. Self-regulated symptomatic treatment was common: using an antidiarrheal drug when an episode of diarrhea began or fiber and bran in response to constipation. Prophylactic use of antidiarrheal medications during work or before important social situations was common. Use of antidepressant drugs for other reasons was noted to improve IBS symptoms. Despite lack of specific therapy, few participants used alternative health care providers or naturopathic remedies. IBS support groups were noted to be therapeutic.

Changes in lifestyle. Most participants reported they made significant changes in their work and social lives because of IBS. Overall, IBS was felt to decrease work productivity and adversely affect the quality of work due to large amounts of time spent in the bathroom. Work days were missed as often as once a month, mainly because of cramping or diarrhea.

Participants universally reported strained social situations because of the illness. Social situations become especially difficult when eating or traveling was involved. Most subjects said they simply avoid these situations by not participating in the social event or by not eating. Many refused social invitations for fear of an IBS episode and not having access to a bathroom. This causes great strain within the family unit.

Interface with the health care system. Medical help is sought in the diagnostic stages of IBS, but afterward most participants dealt with their symptoms on their own. Most felt that their physicians were not helpful with the illness. A sense of frustration with the medical community’s lack of empathic response, a lack of any helpful remedy, and a feeling of being taken lightly was commonplace.

Crystallization

Three overriding themes emerged from the focus groups responses: frustration, isolation, and a search for a niche in the health/sick role continuum Table 1.

Frustration. IBS sufferers displayed a sense of great frustration with the lack of control over their illness and daily lives. The unpredictability of IBS exacerbations, the severity of symptoms and the lack of understanding and empathy for their illness by family, coworkers, and physicians lead to feelings of disappointment, anger and frustration. Participants said: “It is triggered by anything, everything, nothing. It makes no sense”; “There is no control and people don’t understand that…no one can”; “All of a sudden it hits you. I’m afraid sometimes to get up and move”; “I haven’t noticed a pattern, and it’s frustrating”; “I think that part of the stress factor is the frustration of trying to figure out what’s coming next.”

The lack of an adequate medical explanation for IBS was frustrating for most, even though there was relief at the understanding that they did not have a serious medical disease. For some, the search for a cause of their IBS continued, and they explained their illness using life events that make sense for them. Participants viewed the illness as severe and greatly affecting their lives, and they believed that physicians did not give credence to the fact that they were ill. This perceived discrepancy caused them to see their physicians as unhelpful in dealing with IBS. One patient said: “There are medical people who think that it’s all in our head, and if they can’t come up with a diagnosis, it’s a wastebasket diagnosis.”

Frustration becomes a downward spiral triggering new episodes of symptoms leading to greater frustration and isolation. As one participant put it: “For me, my home…is not a very comfortable place, because my dad doesn’t understand this, and some of my family members don’t understand this.”

Isolation. The sense of isolation that participants felt was pervasive throughout the groups. Most felt apart from others, alone in their suffering, perceiving their symptoms as embarrassing and being unable or unwilling to discuss them with friends, families, and coworkers. Through group discussion, they were often surprised to learn of others’ similar episodes with IBS and felt an affirmation of their IBS experiences that they had not before experienced. One patient said: “I thought I was the only one in the whole world.”

Social events were difficult because of the perceived possibility of triggering an IBS episode and were often avoided because of frequent bathroom use, embarrassing occurrences of gas, abdominal pain, diarrhea, and even incontinence of stool. Isolation is further increased by the avoidance of social situations. Participants said: “I can’t go out to eat because I’m not sure what’s going to happen. I can’t go to family functions”; “You dread when somebody asks you to go somewhere, because you are afraid that you’re going to have a problem, and it’s going to affect everybody that you’re with”; “My family is always blaming me that I plan to have us not be able to go on vacation.”

Isolation in the workplace can also be enhanced when an IBS sufferer takes frequent bathroom breaks or must miss work because of abdominal pain. Coworkers’ unsympathetic responses toward the problem and frequent trips to the toilet increase the IBS suffers’ solitude. A participant said: “They (coworkers) complain a lot about me: ‘You’re just trying to get out of work’…that’s how they started teasing me, thinking I was just trying to skip out of work.”

Search for a niche. Participants viewed themselves as suffering from a chronic and sometimes debilitating illness. However, the message they received from the medical community was that there was nothing wrong with them. Nevertheless, the impact on daily life was considerable, and patients with IBS appeared to struggle to determine their place on the illness/wellness continuum. One patient said: “It is a waste of time to seek (help from a physician), because they say its just all in my head…they don’t want to deal with it.”

Even when feeling well, participants were concerned about the timing of their next episode. Thus, a great deal of energy was spent to avoid being ill. Participants said: “I try to get things stimulated in the morning so I can get it over with. It takes about an hour for the whole process because of the residual cramps,” and “I try to avoid certain foods.”

Discussion

These focus group volunteers were very willing to discuss their IBS symptoms and the ways their lives were affected by this illness. It seemed as if many were relieved to finally be able to discuss their problems and symptoms and to hear how others with similar difficulties fared. Quite a few were encouraged that their individual experiences with IBS problems paled in light of others’ difficulties with IBS.

People with IBS have experiences similar to those with other chronic conditions of uncertain etiology and ambiguous diagnostic criteria, such as fibromyalgia, chronic pain, and chronic fatigue. A phenomenalogic study of 22 women with fibromyalgia described 2 higher-order concepts called vulnerability and maintaining forces.¹⁸ The vulnerability was described in terms of feelings of helplessness similar to our theme of frustration. The maintaining forces dealt with ambiguous interaction with health professionals that described lack of recognition of the physical nature of this condition and symptoms. Other forces referred to family support and isolation. Studying a group of people with chronic fatigue, Clements and colleagues¹⁹ also reported an overlap of physical symptoms and stress over which sufferers have no control. They reported that coping with their condition requires avoiding activities and resultant isolation. Studying patients with chronic nonmalignant pain, Kelly and coworkers²⁰ described feelings of loss and the need to be understood and accepted that are similar to themes from our focus groups. The subjects from all 3 studies also affirmed the value of support group membership.

Our patients with IBS made specific suggestions to improve their interactions with physicians. More education about the nature of this illness at the time of diagnosis would be helpful to the IBS sufferer. Educating physicians about how IBS affects the lives of those who are plagued by this syndrome is paramount. An empathic response is warranted from health care workers, especially since this illness is so socially isolating. Because participants were frustrated by the social isolation of this illness, referral to an IBS support group could help decrease this sense of isolation and help the participants learn new coping methods. Although these focus groups were not therapy sessions, it was clear that many participants valued the group interaction and gained information about how others coped with their IBS. Most participants believed that their episodes were triggered largely by stress. They had difficulty determining how their stress could be minimized and, in general, most showed little understanding about stress management. Physicians should help their patients with IBS develop rational strategies for managing stress.

Limitations

The members of these focus groups were volunteers and may not be representative of the whole population. They may represent the more severe cases of IBS, those least likely to have found relief or those most dissatisfied with their health care. However, they were willing to call a nurse and participate in a hospital or clinicbased discussion. In addition, all subjects were white, which may not be representative of the United States culture at large or represent ethnic differences in the manifestation of the disease or the subjects’ solutions to their illness.

Conclusions

People with IBS view their illness as a chronic condition that is episodic in nature and triggered mainly by stressful events. They feel little control over the initiation, intensity, and duration of their episodes of illness, leading them to a feeling of frustration. They perceive their medical care providers as unsympathetic and of limited help in dealing with their disease. The gap between the patient and the physician’s perception of the nature, severity, and consequences of IBS appears to lead to frustration, isolation, and missed opportunities to improve the patient’s quality of life.

Related resources

For patients:

• IBS Self Help Group www.ibsgroup.org National IBS support group site. Offers information and chat rooms.
• HeliosHealth—Link to irritable bowel syndrome www.helioshealth.com/digestive/ibs Brochures, news and discussions.

For physicians:

• Advances in Irritable Bowel Syndrome www.conference-cast.com/ibs/ A lecture series that includes CME options.
• American Gastroenterology Association—Irritable Bowel Syndrome www.gastro.org/public/ibs.html This site addresses the types of IBS seen by GI specialty groups and includes guidelines for diagnosis.
• National Institute of Diabetes & Digestive & Kidney Diseases: Irritable Bowel Syndrome in Children http://www.niddk.nih.gov/health/digest/summary/ibskids/index.htm

Irritable bowel syndrome (IBS) is a gastrointestinal problem estimated to affect 9% to 22% of the US population.^1-4 Recent studies suggest that although IBS symptoms are frequent in the community population,⁵ and those who do often discontinue care⁶ after receiving the diagnosis, despite continuing symptoms.⁷

As a diagnosis of exclusion with no defined physiologic basis, IBS is not well understood by physicians or patients and often not considered significant by the medical community.^8-10 There are no specific treatments for IBS and no evidencebased treatment guidelines.^11,12 This chronic condition has periodic exacerbation over many years that may adversely affect quality of life, especially in the areas of social and sexual functioning,¹³ events best studied from the patients’ perspective. However, few studies of IBS include this important perspective, and those that do usually only sample patients attending gastroenterology clinics, a very small minority of all IBS patients.

To better understand the patient’s view of the longitudinal nature of IBS, the factors that have an impact on symptom initiation and severity, and the needs of IBS suffers, we held community-based focus groups of people with diagnosed IBS. We attempted to determine the types of symptoms they experience, the chronicity and nature of episodic events, accommodations in lifestyles, successful treatments used, and IBS patients’ perceptions concerning their health and health care. This information should be useful to primary care physicians who provide the majority of care for people with IBS.

Methods

We performed a qualitative study using focus groups of volunteers previously diagnosed with IBS. Focus groups were held between September 15 and December 1, 1999. The subjects were identified by posted notices in primary care areas of a multispecialty private practice and through announcements in the local newspaper and at the local IBS support group. We used a structured interview guide reflecting the research questions to elicit responses from participants. During focus group discussions, the moderator used broad open-ended questions that began with low-intensity issues and moved toward higher-intensity issues. Specific probes were provided and modified after each session to incorporate findings from previous group discussions in an iterative process. The questions were initially tested using subjects from the local IBS support group to assure the questions’ comprehensibility and comprehensiveness.

The focus group discussion concentrated on 5 areas of interest: (1) description of IBS symptoms and episodes, (2) episode triggers and factors affecting the duration of episodes, (3) treatments used, (4) lifestyle changes due to IBS, and (5) experiences interfacing with the health care system. These areas of interest were selected on the basis of the existing literature^14-16 and gaps in the literature identified from the researchers’ clinical experience and previous work on IBS.^6,7,15*

Two trained research nurse co-facilitators led each focus group discussion. The master’s-prepared psychiatric nurse with extensive experience in group work led the group discussion, while a registered nurse experienced in focus groups served as an observer and recorder of content and nonverbal behavior. At the focus group meetings, the participants were welcomed and introduced using only first names. Time was spent informing participants of the group’s purpose and length, confidentiality issues and audiotaping, and that there were no right or wrong answers. It was stressed that the purpose of the sessions was to learn about participants’ experiences and opinions and not to attempt to reach a consensus about IBS. The 7 groups of 5 to 10 volunteers each met for 1 hour. After participants consented, the conversation was audiotaped and later transcribed verbatim. At the end of the session, the participants received a $25 honorarium for their time and travel.

Data Analysis

The 2 facilitators met immediately after each focus group to discuss the content of the discussion and to modify probes as necessary. The facilitators and one of the physician coinvestigators (BPY) initially developed summaries of responses to the questions of interest. They then read and reread the typed transcripts and group notes, sifting through the information, highlighting key statements, and looking for patterns and connections to identify dominant themes or concerns. This is known as immersion/crystallization.¹⁷ The researchers then met to review written emerging themes. In this process, each interpreter made connections of ideas and themes through an ongoing spiral of first organizing the data alone and then by corroborating it with the other interpreters. The process of crystallization occurred after several months of deliberations. We present summaries of answers to questions of interest and participant quotations to illustrate dominant themes that emerged in the crystallization process.

Results

Fifty-one volunteers participated (43 women and 8 men; age range=16-72 years). The occupations of the participants included: student, cook, teacher, health aide, musician, self-employed, office worker, chief executive officer of a small company, retired person, and clergy. Most participants were primary care patients and described being followed up medically by their usual physician for IBS symptoms before and after diagnosis.

Symptoms. Abdominal cramping and diarrhea caused most people with IBS to seek medical care. The symptoms often triggered a fear of serious disease, especially cancer. The symptoms were perceived as severe and limiting to the daily routine. Descriptions of abdominal pain were vivid, and participants consistently affirmed that the pain was not ordinary. The diarrhea was described as urgent and explosive. The sense of urgency that accompanies bouts of diarrhea and the inability to plan the day without taking into consideration the need for proximity to a bathroom was often frustrating. Bloating and constipation also occurred but were considered less disruptive of their lives. Participants often searched to find an etiology for their illness, linking the initial occurrence of symptoms with a specific event, such as a hernia or gallbladder operation, food poisoning, or even a cat bite.

IBS symptoms began at various ages, though most subjects were in their mid-teens to mid-30s when they sought help for the first time. Some were able to relate symptoms going back to early childhood. Many noted that constipation was a frequent problem during their preschool and elementary years and visits to physicians for constipation relief during childhood were not uncommon. Several participants said that they had been colicky babies and associated this experience with their IBS.

Episodes. The participants viewed IBS as a chronic disease that affects their lives on a daily basis. Although the symptoms were usually episodic, occurring weekly to monthly and lasting hours to a few days, anticipation of the next episode affected the person between episodes.

Stress and foods were considered common but unpredictable triggers of symptom episodes. Although all participants could identify possible stressors contributing to their symptoms, they universally believed that they had little control over these stressful occasions. Foods that could be eaten without adverse affect at one time triggered severe symptoms at other times. This variable response to potential triggers was a source of great frustration to the participants.

Treatment. Self-regulated symptomatic treatment was common: using an antidiarrheal drug when an episode of diarrhea began or fiber and bran in response to constipation. Prophylactic use of antidiarrheal medications during work or before important social situations was common. Use of antidepressant drugs for other reasons was noted to improve IBS symptoms. Despite lack of specific therapy, few participants used alternative health care providers or naturopathic remedies. IBS support groups were noted to be therapeutic.

Changes in lifestyle. Most participants reported they made significant changes in their work and social lives because of IBS. Overall, IBS was felt to decrease work productivity and adversely affect the quality of work due to large amounts of time spent in the bathroom. Work days were missed as often as once a month, mainly because of cramping or diarrhea.

Participants universally reported strained social situations because of the illness. Social situations become especially difficult when eating or traveling was involved. Most subjects said they simply avoid these situations by not participating in the social event or by not eating. Many refused social invitations for fear of an IBS episode and not having access to a bathroom. This causes great strain within the family unit.

Interface with the health care system. Medical help is sought in the diagnostic stages of IBS, but afterward most participants dealt with their symptoms on their own. Most felt that their physicians were not helpful with the illness. A sense of frustration with the medical community’s lack of empathic response, a lack of any helpful remedy, and a feeling of being taken lightly was commonplace.

Crystallization

Three overriding themes emerged from the focus groups responses: frustration, isolation, and a search for a niche in the health/sick role continuum Table 1.

Frustration. IBS sufferers displayed a sense of great frustration with the lack of control over their illness and daily lives. The unpredictability of IBS exacerbations, the severity of symptoms and the lack of understanding and empathy for their illness by family, coworkers, and physicians lead to feelings of disappointment, anger and frustration. Participants said: “It is triggered by anything, everything, nothing. It makes no sense”; “There is no control and people don’t understand that…no one can”; “All of a sudden it hits you. I’m afraid sometimes to get up and move”; “I haven’t noticed a pattern, and it’s frustrating”; “I think that part of the stress factor is the frustration of trying to figure out what’s coming next.”

The lack of an adequate medical explanation for IBS was frustrating for most, even though there was relief at the understanding that they did not have a serious medical disease. For some, the search for a cause of their IBS continued, and they explained their illness using life events that make sense for them. Participants viewed the illness as severe and greatly affecting their lives, and they believed that physicians did not give credence to the fact that they were ill. This perceived discrepancy caused them to see their physicians as unhelpful in dealing with IBS. One patient said: “There are medical people who think that it’s all in our head, and if they can’t come up with a diagnosis, it’s a wastebasket diagnosis.”

Frustration becomes a downward spiral triggering new episodes of symptoms leading to greater frustration and isolation. As one participant put it: “For me, my home…is not a very comfortable place, because my dad doesn’t understand this, and some of my family members don’t understand this.”

Isolation. The sense of isolation that participants felt was pervasive throughout the groups. Most felt apart from others, alone in their suffering, perceiving their symptoms as embarrassing and being unable or unwilling to discuss them with friends, families, and coworkers. Through group discussion, they were often surprised to learn of others’ similar episodes with IBS and felt an affirmation of their IBS experiences that they had not before experienced. One patient said: “I thought I was the only one in the whole world.”

Social events were difficult because of the perceived possibility of triggering an IBS episode and were often avoided because of frequent bathroom use, embarrassing occurrences of gas, abdominal pain, diarrhea, and even incontinence of stool. Isolation is further increased by the avoidance of social situations. Participants said: “I can’t go out to eat because I’m not sure what’s going to happen. I can’t go to family functions”; “You dread when somebody asks you to go somewhere, because you are afraid that you’re going to have a problem, and it’s going to affect everybody that you’re with”; “My family is always blaming me that I plan to have us not be able to go on vacation.”

Isolation in the workplace can also be enhanced when an IBS sufferer takes frequent bathroom breaks or must miss work because of abdominal pain. Coworkers’ unsympathetic responses toward the problem and frequent trips to the toilet increase the IBS suffers’ solitude. A participant said: “They (coworkers) complain a lot about me: ‘You’re just trying to get out of work’…that’s how they started teasing me, thinking I was just trying to skip out of work.”

Search for a niche. Participants viewed themselves as suffering from a chronic and sometimes debilitating illness. However, the message they received from the medical community was that there was nothing wrong with them. Nevertheless, the impact on daily life was considerable, and patients with IBS appeared to struggle to determine their place on the illness/wellness continuum. One patient said: “It is a waste of time to seek (help from a physician), because they say its just all in my head…they don’t want to deal with it.”

Even when feeling well, participants were concerned about the timing of their next episode. Thus, a great deal of energy was spent to avoid being ill. Participants said: “I try to get things stimulated in the morning so I can get it over with. It takes about an hour for the whole process because of the residual cramps,” and “I try to avoid certain foods.”

Discussion

These focus group volunteers were very willing to discuss their IBS symptoms and the ways their lives were affected by this illness. It seemed as if many were relieved to finally be able to discuss their problems and symptoms and to hear how others with similar difficulties fared. Quite a few were encouraged that their individual experiences with IBS problems paled in light of others’ difficulties with IBS.

People with IBS have experiences similar to those with other chronic conditions of uncertain etiology and ambiguous diagnostic criteria, such as fibromyalgia, chronic pain, and chronic fatigue. A phenomenalogic study of 22 women with fibromyalgia described 2 higher-order concepts called vulnerability and maintaining forces.¹⁸ The vulnerability was described in terms of feelings of helplessness similar to our theme of frustration. The maintaining forces dealt with ambiguous interaction with health professionals that described lack of recognition of the physical nature of this condition and symptoms. Other forces referred to family support and isolation. Studying a group of people with chronic fatigue, Clements and colleagues¹⁹ also reported an overlap of physical symptoms and stress over which sufferers have no control. They reported that coping with their condition requires avoiding activities and resultant isolation. Studying patients with chronic nonmalignant pain, Kelly and coworkers²⁰ described feelings of loss and the need to be understood and accepted that are similar to themes from our focus groups. The subjects from all 3 studies also affirmed the value of support group membership.

Our patients with IBS made specific suggestions to improve their interactions with physicians. More education about the nature of this illness at the time of diagnosis would be helpful to the IBS sufferer. Educating physicians about how IBS affects the lives of those who are plagued by this syndrome is paramount. An empathic response is warranted from health care workers, especially since this illness is so socially isolating. Because participants were frustrated by the social isolation of this illness, referral to an IBS support group could help decrease this sense of isolation and help the participants learn new coping methods. Although these focus groups were not therapy sessions, it was clear that many participants valued the group interaction and gained information about how others coped with their IBS. Most participants believed that their episodes were triggered largely by stress. They had difficulty determining how their stress could be minimized and, in general, most showed little understanding about stress management. Physicians should help their patients with IBS develop rational strategies for managing stress.

Limitations

The members of these focus groups were volunteers and may not be representative of the whole population. They may represent the more severe cases of IBS, those least likely to have found relief or those most dissatisfied with their health care. However, they were willing to call a nurse and participate in a hospital or clinicbased discussion. In addition, all subjects were white, which may not be representative of the United States culture at large or represent ethnic differences in the manifestation of the disease or the subjects’ solutions to their illness.

Conclusions

People with IBS view their illness as a chronic condition that is episodic in nature and triggered mainly by stressful events. They feel little control over the initiation, intensity, and duration of their episodes of illness, leading them to a feeling of frustration. They perceive their medical care providers as unsympathetic and of limited help in dealing with their disease. The gap between the patient and the physician’s perception of the nature, severity, and consequences of IBS appears to lead to frustration, isolation, and missed opportunities to improve the patient’s quality of life.

Related resources

For patients:

• IBS Self Help Group www.ibsgroup.org National IBS support group site. Offers information and chat rooms.
• HeliosHealth—Link to irritable bowel syndrome www.helioshealth.com/digestive/ibs Brochures, news and discussions.

For physicians:

• Advances in Irritable Bowel Syndrome www.conference-cast.com/ibs/ A lecture series that includes CME options.
• American Gastroenterology Association—Irritable Bowel Syndrome www.gastro.org/public/ibs.html This site addresses the types of IBS seen by GI specialty groups and includes guidelines for diagnosis.
• National Institute of Diabetes & Digestive & Kidney Diseases: Irritable Bowel Syndrome in Children http://www.niddk.nih.gov/health/digest/summary/ibskids/index.htm