A Qualitative Exploration of the Lived Experiences of Patients Before and After Ileostomy Creation as a Result of Surgical Management for Crohn`s Disease

Patient experiences pre- and post-ileostomy creation as a result of severe Crohn’s Disease are underresearched. A qualitative phenomenological design involving a purposeful sampling approach was used to capture the lived physical and psychosocial transition of patients with Crohn’s Disease before and after ileostomy formation.Patients were recruited from the membership of the United Kingdom Ileostomy Association; inclusion criteria stipulated participants must speak English and have a diagnosis of Crohn’s Disease and subsequent stoma formation. Ten (10) patients (6 women, 4 men, ranging in age from 34 to 83 years with Crohn’s Disease and an ileostomy [mean time with stoma 18.3 years, range 3–36 years]) participated in indepth, semistructured interviews with questions on sociodemographic characteristics along with questions informed by the relevant literature regarding life before and after the ileostomy. All interviews were audiorecorded and transcribed verbatim. Interpretative phenomenological analysis was used to examine the data and identify and interpret themes. Participants were asked to comment on these themes to ensure they were a realistic interpretation of their experiences. Two (2) major themes emerged that embodied ileostomy formation: being controlled by Crohn’s and transition to a new life with an ileostomy. Crohn’s symptoms controlled daily activities such as work and socializing due, in part, to the need to be in close proximity to toilet facilities. The ileostomy facilitated a transition to a new life that allowed patients to re-engage with work and social activities. One minor theme emerged: memories of Crohn’s. Participants said their memories of Crohn’s affected life with an ileostomy. Where Crohn’s controlled every aspect of people’s lives pre-ileostomy formation, the creation of the ileostomy was a positive experience because it helped manage Crohn’s symptoms. Memories of life pre-ileostomy may affect individuals’ behavior post-ileostomy formation. In order to offer appropriate support, health professionals may need to be more aware that having Crohn’s may affect patient behavior post-ileostomy.

Crohn’s Disease (CD) remains a major cause of morbidity worldwide.¹ Men and women are equally likely to be affected by CD; it is most prevalent among adolescents and young adults between the ages of 15 and 35 years.² With increasing diagnoses of CD at an early age, the burden of this disease also will increase, growing the demand for multidisciplinary team support in severe CD pathophysiology³ that involves complications requiring small bowel resection and the creation of an ileostomy.⁴

Health professionals may be missing opportunities to offer emotional, physical, and social encouragement if they lack understanding of appropriate support that involves a whole person approach⁵ to living with CD⁶ and an ileostomy. According to a review⁷ of 6 international centers for inflammatory bowel disease (IBD) care, understanding these experiences has allowed for integrated care models to better provide practical and emotional support for persons with IBD in general. However, the authors of this review concluded this is not standard international IBD practice, and therefore it is not known if post stoma formation support for patients with CD meets this particular group’s emotional and practical needs. 

Qualitative studies exploring the lived experiences of CD report individuals’ preoccupation with symptom management, such as constant pain and diarrhea that disrupts work, social, and leisure activities.^8-12 CD increases the risk of psychosocial stress such as anxiety and depression. Studies that exclusively detail the lived experiences of patients’ post-ileostomy formation are sparse, and no studies report on the pre- and post-ileostomy lifestyle experience of persons with CD. 

Experiences post stoma formation in general have been explored. A narrative study¹³ using semistructured interviews with 24 adults with IBD ages 18 to 25 years in the UK showed stoma formation for ulcerative colitis (UC) and CD provided a sense of normality, and participants were able to return to life as they knew it before IBD. A qualitative exploration¹⁴ of body image experiences of 9 Swedish men and women 6 to 12 weeks after ostomy surgery reported altered body image had an impact on social life after urostomy, colostomy, or ileostomy formation. A qualitative study¹⁵ among 17 women reported similar findings regarding life post-stoma formation. Three (3) themes emerged as to how women experienced their stoma, the different strategies for daily life with a stoma, and how they viewed themselves post-stoma formation. A phenomenological study¹⁶ with 12 family members uncovered the supportive role the family provides to a family member with a newly formed colostomy. 

According to a review of the literature,¹⁷ stoma surgery can have a negative psychosocial impact for certain people and a positive impact for others. This may be related to the underlying pathology for the surgery and the role of individual’s social environment. For example, in a descriptive, cross-sectional study¹⁸ involving 60 patients (25 women, 35 men, mean age 56.01 ± 10.1 years; 25 with an ileostomy, 30 with a colostomy, 5 with an urostomy), individuals with stomas from a western society tended to be more concerned with body image than people in eastern societies. 

In a stoma quality of life (QoL) questionnaire study,¹⁹ a convenience sample of 76 participants with stomas was recruited from patients who presented to the ward for checkup in a tertiary hospital in Beijing, China. QoL, self-care, and hope were assessed in patients using the Stoma-QoL, a stoma self-care scale. The study found people recovering from cancer reported positive experiences after stoma formation. However, in the study by Honkala and Bertero,¹⁵ individuals felt uneasy about their identity post stoma formation for UC. One hypothesis in the latter study was their new self-identity with a stoma remained hidden until their physiological symptoms had settled. This transition, which may conceal the patient’s true personality (eg, due to feeling less confident with an altered body image), has been reported in numerous interview-based qualitative ostomy studies.^13,15,20,21 

None of these studies differentiated the underlying pathology for the stoma; both UC and CD are classified as IBD. These diseases have different pathologies that have been grouped together to provide clinical meaning. The presence of one does not imply the presence or absence of another.²² In addition, life experiences with an ileostomy and a colostomy are typically analyzed together, even though these stomas bring different practical challenges requiring different skill sets.¹⁷ Furthermore, they are in different anatomical locations, require different ancillary equipment (such as size of stoma bags), collect different effluent consistencies, and are prone to different amounts of flatus.²³ 

Because health professionals have described CD experiences as having a substantial psychological impact,²⁴ it is important for such clinicians to be aware of the transitions involved in these experiences in order to develop best practice within health care services.^24,25 

In addition, a qualitative study involving 20 patients²⁶ receiving long-term percutaneous endoscopic gastrostomy feeding has shown understanding of pre- and postsurgical experiences that can alter body image is important in whole person care.   

The aim of this explorative study was to describe and enhance understanding of pre- and post-ileostomy experiences in patients with CD to help inform clinical practice. 

A phenomenological qualitative approach was relevant to the study purpose. Hermeneutical phenomenology is a philosophical perspective that helps reveal the lived experience of individuals and their existence and relation to the world around them over a period of time by interpreting language and meaning.²⁷ For this study, hermeneutical relevance was a factor of the importance of understanding several individuals’ experience pre- and post- ileostomy formation as a means to determine, by indepth understanding and interpretation of their experiences, how and why a stoma affects an individual’s life. Understanding these interpretations also could uncover whether this population finds the transition to an ileostomy difficult.²⁸ 

The philosophical approach assumes words and language can be studied and analyzed to develop a scientific meaning underlying the lived experience.²⁸ Taking this philosophical stance resulted in the acknowledgment of several assumptions in order to generate an accurate description of the patient experience. Participant experiences will be envisaged as reported. 

The Coventry University Ethics Committee approved this 9-month study. 

Participant sample and recruitment. Purposeful sampling enabled an inductive, homogeneous sample to be obtained for this small, narrowly defined population.²⁹ The results from the limited population in this study cannot be generalized to the whole population of individuals with ileostomies and Crohn’s; however, according to Cresswell,²⁷ a sample size between 3 and 10 participants can give information-rich descriptive data on personal experiences. According to Biggerstaff and Thompson,²⁸ this allows subsequent interpretation to inform clinical practice. 

The secretary of the Coventry, United Kingdom Ileostomy Association volunteered to identify potential participants and send a letter inviting the 36 members who met the inclusion criteria to participate in the study. The secretary received no payment. Members were asked to contact the researcher in writing or by telephone if interested. None of the participants were known to the interviewer. 

Inclusion and exclusion criteria. Patients over the age of 18 who spoke English, and who had been diagnosed with CD and had an ileostomy, were included. 

Procedure. The researcher telephoned and further explained the purpose of the study to the 10 persons who expressed an interest in participating. Written information on the study was sent to these interested parties by post. All participants invited the researcher into their homes and provided written informed consent. Per ethics protocol, the researcher telephoned a colleague before and after leaving each participant’s home.  

Semistructured interviews were audiorecorded using lapel microphones. The interviews lasted between 20 and 68 minutes. Each participant gave 1 interview. Interview topics were determined by the researchers after they examined evidence-based guidelines on constructing qualitative interview schedules.²⁹ The interview topic and questions were piloted with 1 participant, and 1 question was changed to improve clarity on that participant’s feedback. The topic guide included the following items: 

1. Tell me about your life before you had an ileostomy. 
2. Tell me about your life after you had an ileostomy.
3. How did the ileostomy affect your life? 
4. Tell me about the support you received after surgery. 

Additional questions (eg, How did the ileostomy effect your social life?) were used to gather further relevant data. All interviews were transcribed verbatim.³⁰ 

Data analysis. Reflexivity was incorporated into the interviews. This involves identifying and understanding the lived experiences the researcher brings to the study, reducing the potential for personal beliefs and clinical experiences to influence the analysis.29 The researcher did not have Crohn’s or an ileostomy; his interest stemmed from gastroenterological nutritional experiences in his role as a clinical dietitian.  

The interview data underwent interpretive phenomenological analysis to facilitate the exploration of the meaning behind the lived experience as described by the participant.²⁹      All transcripts were read through several times to gather an overall understanding for the interview. Each transcript was subsequently reviewed twice (as a minimum), and significant phrases or sentences that linked directly to the experience of life pre and post-ileostomy were identified.

All identified parts of the transcripts were reviewed to obtain an overall meaning of the experience. These parts were clustered together into a theme. The researcher kept a reflective diary to note thoughts and feelings on the transcripts during the analysis to help inform and edit the emerging themes. 

Themes underwent internal peer review. The second researcher reviewed the transcript against the identified themes to ensure all relevant data had been captured. Final themes and descriptions were sent to the participants for comment as a measure of data trustworthiness. All participants agreed with the analysis as a true representation and interpretation of their experiences. 

Six (6) women and 4 men, mean age 52.2 (range 34–83) years, participated. Mean length of time with an ileostomy was 18.3 (range 3–36) years. Six (6) participants were employed full time and 4 were retired. All participants lived in the West Midlands, UK. 

The results involved the embodiment of the stoma. Two main themes emerged: controlling experiences in relation to life pre -ileostomy and new life post ileostomy for CD. One minor theme emerged: memories of Crohn’s. Participant names have been changed in the following interview results to maintain confidentiality. 

Being controlled by Crohn’s. Crohn’s pathology affected how all participants perceived themselves. Daily activities of work and socializing were difficult not only due to physical symptoms such as abdominal pain, vomiting, and diarrhea, but they also affected participants’ moods. This depressed mood was compounded by reduced social interaction due to these physical symptoms. Long-term absence from work further affected patients’ morale. Participants were physically and mentally fatigued and became aware of changes in how they felt and looked. A negative view of their own physicality and accompanying emotional upset was expressed.

Before the ileostomy was done, you’re just in constant pain; stomach cramps, bleeding, diarrhea. And you think…as soon as you ate the wrong thing, you knew about it. (Jim) 

Life without it (the stoma) was terrible. I was constantly looking for a toilet. My employer thought I was not interested in work; I nearly got sacked for having so much time off…I got really low then. (Sarah) 

I just was so poorly, and if you got your bowel blocked, you just vomit. So you’d either got bad diarrhea or you were vomiting. (Yvonne) 

Crohn’s also controlled the participants’ interpersonal relationships and provoked different emotional reactions in family and friends as a result of its debilitating, uncontrollable symptoms. Participants’ emotional responses to their families’ and friends’ reactions to them were mixed — they were or were not bothered or upset depending on how they felt they were perceived. Some people felt emotionally cared for; others felt challenged by people’s reactions to them before the ileostomy:   

Before the op my parents weren’t quite sure whether I was anorexic, because I went so thin like a skeleton…They were really worried. I was permanently looking for a toilet, and life was no fun anymore. (Lucy)  

But before the stoma, it was awful…We would go for a meal, and I had to be wary about what I ordered from the menu. And then when the meal came, I’d be halfway through my starter, I had to go off to the toilet, and I’d be in really bad pain; bloated. Come back, eat some more, go back to the toilet; and it became a standing joke between friends and family:        
“Oh, Angela’s going to empty her stomach and then she’s going to come back and have some more.” So yeah, it was very hard without the stoma. (Angela) 

New life: experiences of an ileostomy. An ileostomy was perceived as a positive life change by all participants. The stoma facilitated a return to a “normal life.” This normal life was a world in which people could start to regain their independence from the controlling experiences of Crohn’s. It allowed people to return to work, re-establish neglected friendships, and retrain for different vocations. This new world evolved as individuals reflected on the importance of life after the experiences pre-ileostomy.  

Well, first of all, I think I felt a lot better after I had it done. So I was quite happy on that. I really haven’t had too much of a problem with it. It seems quite happy; it seems to behave itself all right. So I’m now getting out and about. (Peter) 

You don’t get stomach cramps. Don’t get constant diarrhea, so you don’t have a sore anal area; it affects an area like that. You’re not thinking where the next toilet is because you’ve got a modicum of control, and you don’t have to worry when you don’t have to go to the bathroom every 2 minutes. (Jim) 

As a result of this new life, all participants did not want their ileostomies reversed. The ileostomy helped people transition into a new world where socializing with friends and family was a meaningful and important and enjoyable activity.  

I’m in no rush to have it reversed because my quality of life has improved tenfold. I’ve retrained at college. I have a new profession; I work full time, so life isn’t too bad. (Lucy)  

It’s a total freedom. And they’ve offered me now to remove the stoma, and I’ve refused. I’ve been refusing for a year now. I’m going to continue to refuse. Because life with Crohn’s and a stoma is a hundred times better than life with Crohn’s. It really is. (Peter)

All participants became experts on the technicalities and practicalities of having an ileostomy from the time they were fitted with an ostomy pouch. As a result of their previous experiences, they wanted to become experts within this area, ultimately to return to a normal life: 

In hospital, they put the bag on but it came off in the night. I called a nurse, she called another nurse, and nobody knew how to put the bag back on. The following day, the stoma nurse came in and she dealt with it, and it was okay. After that I was teaching the ward nurses how to put the bag back on. (Yvonne) 

Memories of Crohn’s. Feelings associated with the distressing physical symptoms of Crohn’s pre-ileostomy formation affected life post ileostomy for some individuals. These emotions influenced their new “normal life,” one in which they could return to socializing and work. Depressed feelings of living as a malnourished person as a result of the malabsorption of micro- and macronutrients were common among half of the sample. This affected health behaviors, such as intentional weight loss for steroid-induced weight gain, because participants were wary of reverting to unhealthy situations (not wanting to be too thin) associated with CD. For 5 participants, the thought of losing weight intentionally was entwined with feelings associated with unintentional weight loss pre-stoma formation. 

I’ve thought long about losing weight that I’ve put on, but do you know what?…I’m happy this way and I certainly don’t want to go back to a walking skeleton. (Lucy)

Other individuals assigned any adverse reactions to the stoma (for example, pain while eating certain foods) to their memories of life pre-stoma. 

I wouldn’t say it was the food that upset my stoma. Seems I had psychological ideas of it and Crohn’s, that might happen. So largely it’s my own doing. (Jim)  

This study uncovered experiences pre- and post-ileostomy formation for CD and provided some insight into the behavior of individuals coping with stoma function, allowing comparison between pre- and post-stoma experiences.¹⁶ CD patients pre-ileostomy experienced the same physical symptoms and emotions as people with UC⁴ as documented by other researchers.⁸ Work and socializing were predominantly affected in both pathologies. This may have been because of the pain associated with IBD and the need to be in close proximity to a toilet due to patients’ preoccupation with losing control of their bowel movements in public.¹¹ 

However, in this study, the ileostomy formation brought relief from these symptoms. The ileostomy offered positive change from undesirable symptoms. This return to a normal life relieved people’s preoccupation with the closeness of toilet facilities.¹¹ An ileostomy was seen as a positive experience because it relieved certain symptoms of Crohn’s. For example, fecal material could be handled by the stoma, allowing patients to continue with their activities, such as their employment. This may have brought a sense of relief to individuals who previously may have worried about their lack of physical control over their bowel functions. Not being able to control bowel function often leads to a loss of self-worth.⁹ 

Pre-ileostomy experiences in this study were the same for those individuals with Crohn’s as for those living with UC as documented in other studies. A qualitative study³¹ involving indepth interviews with 33 family members described a fundamental change in patients with UC after creation of a stoma. Having an ileostomy may have reduced the physical discomfort and negative emotions and helped patients cope better with their IBD. 

Lifestyle advice (for example, healthy eating for intentional weight loss post stoma formation) may be overridden by memories of Crohn’s. For example, 1 participant recognized it was important to reduce his weight for long-term health as a result of extended steroid treatment for Crohn’s management pre stoma.¹ However, overriding issues of the unintentional weight loss associated with Crohn’s diagnosis were prominent. Any proposed weight loss (by either the patient or health professionals) was associated with this pre-ileostomy distressing time. Such associations can make it difficult for patients to take future actions based on dietary advice to reduce body weight. 

This disease’s effect on an individual’s post ileostomy self-perception had nothing to do with their social lives, such as the reactions of friends and family to the stoma. Emotional support pre-ileostomy is essential in order to prevent individuals from developing negative feelings post ileostomy. This whole person care approach has been recommended for other IBD groups.³² Individuals with UC also experienced body image changes due to the side effects of medications used to treat UC symptoms (for example, weight gain from long-term steroid use) but were able to make successful lifestyle changes, such as intentional weight loss.     

According to a randomized, controlled trial with 84 patients,³³ stoma formation may be symbolic of a new life post ileostomy. Participants are more accepting of Crohn’s post-ileostomy because the symptoms are easier to deal with, which means less stress within their lives⁷; they also may accept that while the ileostomy is not a cure for Crohn’s, it has improved their QoL per a qualitative study involving 40 patients by Shaffy et al.³⁴ Stoma formation helps facilitate a more positive emotional response to themselves as seen in individuals with UC.²⁰ 

The patient’s experiences post ileostomy formation may be different than those of individuals post colostomy formation. In the current study, people reported positive experiences specifically regarding ileostomy formations. This adds worth to this study, because previous studies grouped all types of stoma together. Without analyzing these experiences regarding different types of ostomies separately, positive experiences might remain hidden, because colostomy experiences otherwise have generally been reported as negative.⁴   

Individuals with UC reported changes in close relationships. Participants in this study sometimes reported their behavior when outside the home had become a source of humor for friends and family. Family and friends are a source of physical and emotional support.¹⁶ However, qualitative research^35-37 exploring family support into other chronic conditions, such as renal disease, shows significant others can cause nonadherence to treatment and are a factor of the interpersonal relationships (such as close friendships or marital relationships) in question. One theory³⁷ purports fluctuating family dynamics as a result of a diagnosis to be the cause of nonadherence. The length of a relationship may greatly affect (either positively or negatively) the amount of support provided. Families may need to be supported themselves as part of the whole person care process because they provide all types of support that health professionals cannot provide. 

There are several limitations to this study. The analysis and interpretation was carried out by 1 person. Although internal peer review allowed an independent person to verify the analyses, it did not involve a second independent analysis of the original data. Secondly, the small narrowly controlled sample may not represent all lived experiences of having an ileostomy created for CD.  

CD controlled aspects of study participants’ lives pre-ileostomy formation. Ileostomy construction was a positive experience because it helped manage the symptoms of CD. Memories of life pre-ileostomy may affect individuals’ behavior post-ileostomy formation. Changing behavior to facilitate intentional weight loss may be challenging. Feelings regarding low body weight and malnutrition pre-ileostomy due to CD pathology may hinder intentional weight loss post-ileostomy. Health professionals may need to be aware that the experiences of an ileostomy with Crohn’s may affect people’s behavior post-ileostomy. 

Please address correspondence to: Mr. Andrew Morris, University Hospitals Coventry and Warwickshire NHS Trust, Dietetics, University Hospital, Clifford Bridge Road, Coventry CV2 2DX, UK; email: andrew.morris@uhcw.nhs.uk.