Young Adult’s Perception of Life with Inflammatory Bowel Disease and a Stoma

Abstract

Background

While the experiences of young adults with Inflammatory Bowel Disease (IBD) and a resultant stoma have been investigated in the USA, there is a paucity of such qualitative research in Europe. In Ireland, the voices of this patient cohort have remained remarkably silent.

Aim

The purpose of this study was to achieve an understanding of the lived experience as depicted by young adults with IBD and a stoma.

Methods

A qualitative approach was adopted comprising a single, detailed semi-structured interview with each of the 5 participants aged 20-30 years. Purposive sampling was employed. Those with a histological diagnosis of IBD and a consequential stoma within the last 12 months were recruited via a letter of invitation. Verbatim transcripts of these interviews and associated field notes were analysed using Interpretative Phenomenological Ethical approval was attained prior to study commencement.

Results

Five superordinate themes emerged from the analysis:

(1) Control,

(2) Secrecy,

(3) Patient education and support services,

(4) Difficult emotions,

(5) Acceptance and growth.

A universal struggle to preserve autonomy of bodily function, emotions and healthcare decisions existed among participants. Patients embraced the predictability of their stoma relative to the restraints imposed on them by their erratic pre-operative bowel habit. Participants also reiterated the importance of patient education in order to avoid uncertainty and distress for some patients.

Conclusion

This study provides a greater understanding of the education requirements of this patient cohort. Furthermore, participants‟ early acceptance of their stomas may serve to reassure others.

1. Background and Literature Review

Inflammatory Bowel Disease (IBD) encompasses two intestinal disorders of uncertain aetiology, namely Crohn’s Disease and Ulcerative Colitis. Akin to other chronic illnesses, IBD is characterised by unpredictable periods of exacerbation and remission. The symptoms of which may include diarrhoea, weight loss and abdominal pain.

In Europe, an estimated 2.2 million people suffer from IBD¹, many of whom deem their quality of life to be decreased as a result of their illness. The colostomy or ileostomy functions to divert the flow of the bowel to empty through an opening (stoma) into an external bag and may be permanent or temporary with a view to eventual reversal. It is well documented that the potentiality of requiring a faecal stoma is a primary concern of this patient cohort^2-4.

Patient centred outcomes, such as quality of life, are now fundamental in health care research⁵ and studies have reiterated the need for a multidimensional attitude towards IBD in recognising its psychosocial repercussions⁶. Nonetheless, a review of the literature identified a lack of research investigating the lived experiences of young adults living with IBD and a resultant stoma; a patient cohort which struggles in particular to adapt to stoma surgery⁷.

There is a discrepancy in the literature with regard to the physical and psychosocial impact of stoma surgery. Furthermore, research completed to date on this topic has depended largely on structured questionnaires to evaluate quality of life (QoL), working and socializing and perceived body image post stoma surgery^{5, 8}. The findings from the majority of these studies would suggest that patients living with IBD fare well post-stoma formation and achieve a good QoL^{5, 8}. However, despite an apparent improvement in the individual’s functional status with stoma formation, related qualitative research found this physical improvement to be often at the expense of the individual’s psychological wellbeing and social and sexual identity^{9- 11.}

In a society that promotes the idealistic slim and unblemished body image, it is perhaps unsurprising that Notter and Burnard⁹ found female ostomates to feel mutilated and less feminine as a result of their ileostomy. A qualitative study by Sinclair¹¹ exemplified the well-documented reaction of grief as a result of radical, surgical body change with young adult ostomates describing feelings of intense mourning and inadequacy.

Concerns regarding sexual function and desire among individuals with stomas are well documented in the literature. Carlsson and colleagues¹² identified intimacy, a loss of sexual drive and ability to perform sexually as the predominant worries among individuals with IBD and an ileostomy. Similarly, participants in a study by Manderson¹³ reported lengthy periods of sexual inactivity to the extent that they frequently questioned their ability to be intimate. Individuals with IBD typically describe their struggle with the loss of autonomy over bodily function and the restrictions placed upon them by their illness. Some women in a study by Notter and Burnard⁹ likened themselves to non-domestic animals that “defecate without apparent control, and have characteristic smells” while others spoke of the humiliation felt when their stoma bag leaked. In contrast, participants in a study by Persson & Hellstrom¹⁴, who pre-ileostomy had suffered from frequency and urgency, rejoiced at the freedom their stoma had given them and relished the new-found control they had over their daily activities.

Despite a body of work on the impact of a faecal stoma existing there is a distinct paucity of qualitative research examining the experiences of IBD patients exclusively. This is a limiting factor as the psychological implications of a stoma are likely to differ in an individual with cancer as opposed to in an individual with IBD. Moreover, existing literature is subject to recall bias as the defined sample selection criteria has not commonly included the time since stoma formation. In Ireland, our knowledge of the impact of a stoma on patients with IBD is largely based on structured psychometric evaluations. This has hampered a fresh insight into this research question and rendered the voices of this patient cohort silent to date.

2. Methods

2.1 Aim

The aim of this study was to explore the lived experiences of young Irish adults living with IBD and a resultant stoma. Qualitative research methods were employed with a view to gaining a deeper insight into the human experience of this patient cohort. It was anticipated that this study would better inform health professionals of the physical and psychosocial implications of a stoma and ultimately, enhance clinical practices and patient care accordingly.

2.2 Ethical Review

Ethical permission was attained through the Cork Regional Ethical Committee (CREC) prior to study commencement. All participants were assured of anonymity and the data was kept confidentially in accordance with the data protection requirement.

2.3 Participants

2.3.1 Recruiting Participants

With the assistance of two stoma nurses, 5 adults (aged range 20-30 years) were recruited from both the Mercy University Hospital and the Cork University Hospital. In keeping with phenomenological methodology, purposive sampling was employed with the sample size being kept small to better appreciate the depth of their experience. Prospective participants, identified by the two stoma nurses, were invited to take part via letter. Contacted patients were followed-up with a phone call and given the opportunity to discuss the study further both with LH and the chief investigator AJ. All participants received a participant information sheet and a consent form prior to their interview.

Table 1. Participant Characteristics

Participant	Gender	Age	Type of IBD	Stoma	Procedure	Employment status	Relationship Status
John*	M	23	Indeterminate	present	End ileostomy   Awaiting J-Pouch	Full time	single
David	M	24	UC	present	End ileostomy Awaiting J-Pouch	Full time	single
Peter	M	20	UC	present	End ileostomy   Awaiting J-Pouch	Student	single
Andrew	M	28	UC	present	End ileostomy   Awaiting J-Pouch	Full time	single
Michael	M	30	CD	present	End ileostomy	Full time	partner

*Participant’s names have been changed to preserve anonymity

2.3.2 Selection Criteria

Eligible participants were those with a histological diagnosis of IBD, aged between 18-30 at the time of stoma formation and Caucasian. Patients were excluded if they did not have a stoma either during the year precluding interviewing or at the time of interviewing in an effort to limit recall bias. Additional exclusion criteria included participants unable to give informed consent or those who could not speak English. Five interviews were conducted and analysed. The basic demographic and IBD related characteristics of the participants are outlined in Table1.

2.3 Data Collection

Data collection took place between June 2011 and September 2011. Each participant took part in one audio-taped, semi-structured interview taking place in an interview room on University College Cork premises. Signed consent was gained prior to starting the interview. The interviews lasted from 37 min to 1.25 h. All interviews were conducted by LH. As shown in Table 2, an interview schedule consisting of broad, open-ended questions was utilized to encourage participants to give an in-depth account of their experiences. Field notes describing nonverbal cues from participants and the context of dialogue were also made. Participants were given the opportunity following interviewing to give further clarification of their experiences should they feel it necessary. All 5 interviews were transcribed verbatim by LH which allowed further familiarization with the data prior to analysis.

2.4 Data Analysis

An interpretative phenomenological approach was adopted in the data analysis. Individual interview transcripts were read repeatedly by all authors independently with a view to recognizing and coding emerging themes. Related themes were subsequently organised into clusters in an effort to establish super- ordinate categories. Relevant quotations were highlighted and grouped under each theme by LH. Finally, as shown in Table 3, a table of themes was created in order to clearly represent the main issues raised by each participant. At each stage the thematic arrangement and chosen illustrative quotations were discussed, expanded and agreed upon by all authors in an effort to eliminate personal researcher bias, promote validity of the results and achieve rigor.

Table 2. Summary of Topics covered in the interview schedule and example questions used.

Topic	Example question used
Symptom experience pre-stoma	Can you tell me about how you came to be diagnosed with IBD? Can you describe your experiences living with IBD prior to the stoma surgery?
Pre-contemplation of stoma formation	Can you tell me about the events that led you to deciding to opt for the surgery? Can you describe the decision making process and your thoughts at the time? Did you feel prepared for the stoma surgery?
Initial experiences post-stoma formation	Can you describe your initial reaction to the stoma? What were your experiences with the stoma after care services?
Impact of stoma on daily life	Can you describe how daily life is now with the stoma? How does the stoma impact on your social life? How does the stoma impact on your work/studies? How would you compare life prior to the stoma surgery and life after the surgery? Is there anything you feel might have improved upon your experiences with the stoma to date?
Body image	Has the stoma affected your body image? When you look at yourself in the mirror how do you feel?
Closing question	Is there anything else you would like to discuss?

Table 3. List of superordinate and constituent themes

Control	Patient controlled by dictations of IBD
	Efforts made by patient to regain control
	Control of decision to proceed with surgery
Secrecy	Delay in diagnosis due to concealment of symptoms
	Awareness of family and friends of IBD and stoma
	Frankness of consultants
Patient Education and Support Services	Experiences with stoma aftercare services
	Self-education
	Experiences with Consultant Surgeons and Gastroenterologists
	Patient support groups
Living with Challenging Emotions	Embarrassment
	Fear
	Insecurity
	Frustration/Anger
Acceptance and Regrowth	Initial shock

3. Results

Strong similarities existed in the participants‟ attitudes towards living with IBD and a stoma. These common experiences are represented by five recurring superordinate themes, namely: 1.control, 2. shroud of secrecy, 3. patient education and support services, 4. living with difficult emotions, 5. acceptance and growth. Each of these identified themes is explored below.

3.1 Control

Pervading each participant’s interview was the continued struggle with bodily control. In relation to this, sub-themes which were universally expressed by the participants included the oppressing influence of IBD, the efforts made to suppress symptoms and the ultimate decision to resort to surgery.

Prior to stoma formation, the participants found their daily activities to be dictated by their illness. The proximity of a toilet was paramount and resulted in even brief outings becoming regimented ordeals.

“…you didn’t really go somewhere unless you essentially knew there was a toilet within 30

seconds.”

John, 23

Nonetheless, participants felt their illness was manageable in their daily lives provided it conformed to a pattern. Predictability was crucial as it enabled patients to pre-empt compromising situations and develop adaptive strategies.

“There is a certain point about this thing. You can manage it once it’s predictable. Then it passes a point where it’s predictable and then you’re struggling with it.”

John, 23

Numerous efforts to retain symptom control, in the form of extreme dieting and drug regimens were made by patients before eventually agreeing to surgical intervention.

“….I thought the less that went in the less that came out so I was literally starving myself.”

Peter, 20

Participants described living in continual hope that the next medication trial would control their symptoms. Drug regimens were often prophesized by health professionals as being the solution to their troubles and patients described the inner turmoil of continual setbacks in this regard.

“…they said “This is going to sort it. This is like gold dust.” and they gave me two courses of it. It didn’t do anything. I was shocked.”

Andrew, 28

However, these efforts served to pacify participants in the long term as they were reassured by the knowledge that they truly had exhausted every other option besides stoma formation.

“The morning of the surgery I got up fine. It had to be done you know…there really was no other option. I genuinely had tried everything. Even acupuncture!”

John, 23

In fact, many participants did not feel the eventual surgical intervention to be their choice but more so that it was necessitated by their illness. Again, this reiterates the loss of autonomy experienced by the participants when in the throes of illness.

3.2 Shroud of secrecy

Participants contrasted greatly in their willingness to disclose their illness and its surgical implications to others. Embarrassment was expressed due to the stomas connection with faeces and toileting and most found they were soon living beneath a veil of secrecy extending to friends and even family members in some cases. Some participants spoke also of how this secrecy and subsequently their hesitation in presenting to a health professional actually delayed their initial diagnosis and treatment.

“It’s not something you really want to go to the doctor about but then it got so bad I kind of had to….”

Peter, 20

Conversely, other participants such as Michael managed to overcome feelings of embarrassment and benefited from the support, encouragement and reassurance of friends and family.

 “The guys I was friends with they knew what way it was so they’d always stand not far from the bathrooms so that if I was feeling unwell I wouldn’t have far to go.”

Michael, 30

Even so, participants unanimously concealed their stomas when in unfamiliar surroundings and avoided broaching the topic of their stoma with acquaintances made post-surgery.

“Lies! I lie about that kinda stuff. “Oh yeah…I’ve to wear this thing…I’ve had surgery there and eh…it’s like extra padding or plasters.”

David, 24

When questioned, Michael related the success of the surgery to the apparent invisibility of the stoma to strangers rather than its effectiveness in eliminating his symptoms. This emphasizes the importance of perceived peer acceptance in the patient’s satisfaction post-surgery. In effect, the pressure to uphold

the illusion of an untainted body-form was palpable with all the interviewees and proved to be one of the main issues provoking the rejection of a permanent stoma.

“Do I really want to be stuck with a bag? Every new person you meet and stuff…you have to..even meeting a girl or whatever you have to go through the whole thing. It would be easier to just not have it.”

David, 24

Participants described the use of generic terminology such as “bandages” for their stomas even when in the company of those aware of their illness.

“It’s weird. I’d never say the word bag or anything you know. I’d never use that word even at home…I couldn’t bring myself to say the word.”

Peter, 20

Evidently, some of the participants had difficulty in overcoming the belief that there was a stigma associated with having stoma.

3.3 Patient education and support services

A discrepancy existed in participants‟ experiences with the stoma after care services. The majority of patients reported positive interactions with the stoma nurses themselves, commenting on their understanding nature and capable manner.

 “She’s great like. She knew so much about it like…everything the doctor said kind of fell into place with what she was saying. She just had that bit extra time to discuss things properly.”

Peter, 20

Patients identified the capacity of the stoma care services to compensate for the generally hectic nature of outpatient clinics and provide a safe place where worries and questions could be voiced without such time constraints. However, despite this appraisal, certain criticisms such as the inadequacy of pre-operative information were brought to light. Some patients felt there was an onus on them to self-educate and described the consequences of sourcing non-peer reviewed information online.

“I googled it which was a big mistake because obviously when you google something some of the bad ones come up on the first couple of pages and comically when the page loaded I kinda slammed the laptop down.”

John, 23

“I remember I was in a room with another patient and he had cancer of the bowel…and he said “The one thing I’ll tell you is internet. You’re not going to get any information inside here.” Which is not nice.”

David, 24

The data revealed a clear pattern and highlighted the participants who underwent stoma formation under emergency circumstances spoke most negatively about their experiences. This patient cohort depicted receiving little pre-surgery guidance and recalled feeling totally uninformed as to what a stoma entailed.

“I mean I didn’t even know what a stoma was. It was just straight in…I just knew I’d have bag and I didn’t even know what a bag was.”

David, 24

“It all happened in a weekend. It was announced on a Friday and the surgery was done on a Sunday. I don’t know…do people usually get information before the surgery?”

Andrew, 28

Patient education and support is not solely the responsibility of the stoma care services. This was reflected in the participants‟ accounts of the standard of information received from Consultant Surgeons and Gastroenterologists alike. Patients described how the possibility of them requiring surgical treatment was raised very late in the illness trajectory and often only when all other options had failed. This functioned to fuel participants‟ initial shock when faced with the prospect of a stoma.

“….“You’ll have bag outside your stomach”. That was the first time that was essentially said properly to me and it was very hard to accept at the time. It was a pretty big shock.”

John, 23

In general, it would appear that there was a presumption made by health professionals that patients were understanding of their illness when in fact their grasp of basic concepts was limited. Michael, in particular, illustrated his anger in this regard, feeling that core features of his panproctocolectomy procedure were left open to interpretation.

“I personally thought I was going to have something back there still…maybe just the anus…that was never addressed. It seemed to have been overlooked as something to bring up with the patient that you’re going to have a big scar down your back, you’re not going to be able to sit comfortably for 8-9 months and it’s going to in my case, rip open every so often.”

Michael, 30

This ambiguity also extended to include family members in some cases.

“The worst thing was probably my parents. They didn’t know what was going on..no one knew what was going on.”

David, 24

Some participants recounted statements made by medical practitioners in relation to their illness and expected treatment outcomes. These false promises and their eventual disproving served only to jeopardize the patient-doctor relationship.

“….“We really don’t….” people said to me…“We really don’t think it’s going to come to surgery”. Even though thinking back I think they knew full well I was going to end up having the surgery.”

Andrew, 28

Accordingly, it is understandable that patients spoke positively of the definitive nature of a surgical consultation. Despite initially being alarmed at the directness of the surgeons the majority of participants embraced this approach and thought it beneficial in the long term.

All participants ultimately endeavored to be educated with a view to making an informed decision and commended consultants who engaged them in this process.

“The best you can do is to make a fully informed decision at the end of it like and that’s essentially what I’m aiming for.”

John, 23

Whilst all participants were aware of support groups in their locality only one participant attended; the general consensus being that the predominance of geriatric patients in attendance was off putting.

“…I went up there twice and both times I went there was about 12 or 13 people there each time and I was the youngest there by about 15-20 years. That only reinforced the idea that you know, only older people should have a bag.”

Michael, 30

3.4 Living with Challenging Emotions

Numerous difficult emotions were adverted to by participants the most prevalent of which were embarrassment, fear, insecurity and frustration.

3.4.1 Embarrassment

All of the patients struggled with embarrassment as a consequence of their illness. This awkwardness was often due to the dread of being seen as “different” to their peers. Participants made every effort not to draw attention to themselves or their bowel habit.

 “I remember racing through the exam to finish early because of course you’d be very conscious of putting up your hand and drawing attention to yourself…”

Michael, 30

Noises from the stoma were deemed to be of the biggest sources of embarrassment and participants felt they made public a stoma that can generally be concealed.

“You know people don’t expect to hear wind from your stomach. I’d never go out if I had wind. If I had a lot in the morning and I thought it wouldn’t stop I just wouldn’t go to college. I just wouldn’t. I’d be too embarrassed.”

Peter, 20

3.4.2 Fear

Participants described feeling “paralysed” when in the grips of their illness due to the “fear” of being caught in an uncompromising situation. Emotions experienced prior to stoma formation seemed to centre on bodily appearance and how others would perceive the stoma. Michael worried about his partner‟s reaction to his new body habit and whether she would still look on him in a similar light.

“…I was thinking how was she going to look at me after the surgery? Was she going to look at me? I’m not going to be the person that I was.”

Michael, 30

Participants also described their anxiety in relation to J-Pouch reversal and its potential failure.

“…I’m kind of worried that I’ll be looking for toilets again and afraid that it’s going to come away.”

Peter, 20

The uncertainty of their histological diagnosis was also a source of worry for some of the participants with a diagnosis of Ulcerative Colitis. These patients understood the impact a subsequent diagnosis of Crohns Disease would have on the reversibility of their stoma and clung vulnerably to estimated percentages to reassure themselves.

 “It’s still a big worry that I’ll get Crohn’s you know? I try not to think about it…They said when they got it out and examine it they sent it to pathology or whatever and they said they were 90% sure it was colitis.”

Peter, 20

3.4.3 Insecurity

Participants‟ perception of their body habit was exposed as a prominent source of insecurity. A lack of confidence arose in particular due to the change in body-weight encountered pre-operatively by the patients.

“The change in weight was a big thing. I had to eat like a horse for ages to get back up to weight. I got so thin.”

David, 24

John denied the stoma having a negative impact on his body image but then went on to describe methods used to avoid the sight of his abdomen.

“….but I do find it a bit unsettling to look at myself in the mirror when it’s exposed. I still find that. I just don’t do it. It just looks so unnatural to me. I don’t think I’ve done that in about 4/5 months.”

John, 23

The use of an elasticised bandage was common among participants with one patient describing how it enabled him to go topless at the beach and another explaining the confidence it gave him in intimate scenarios.

“Intimacy is a bit of an issue and even now you know I usually put on the belt if I’m staying over at Mary’s*. But if I’m staying at home with the parents I wouldn’t wear it at all.”

Michael, 30

Nonetheless, participants were satisfied with their ability to conceal the stoma in public and felt it was generally “not noticeable at all” under clothes.

3.4.4 Frustration

Participants varied in this regard. Some patients directed their anger at their illness and asked “Why me?” whereas Michael in particular expressed self- directed anger as though he was to blame for the progression of his illness.

 “There was probably a bit of anger on my behalf that I’d let it….that it had gotten to that point.”

Michael, 30

Patients‟ frustrations with their stomas were predictable in that they centered on leakages, noises and unpredictable inflation.

“Going for a shower..it just goes everywhere and I wake up in the morning and the bag has opened and gone all over my sheets and stuff. That’s not nice.”

David, 24

Even so, despite complaining of these annoyances the participants collectively felt these drawbacks to be minor relative to the suffering and restrictions they endured pre-operatively.

3.5 Acceptance and Growth

Following an initial period of shock the manner in which participants reacted to the reality of their stoma varied. Michael depicted a self-described “angry-phase” in which he rejected his stoma and the predicament in which he found himself.

“…it wasn’t until I actually put my hand on it that there was this sense of finality. That it was there and it was there for good. You’re stuck in that corner then and I wasn’t comfortable with it for a long time. For the first 3 or 4 months I didn’t like it.”

Michael, 30

In contrast, others such as Peter approached their state pragmatically making a conscious effort to avoid adopting a negative attitude.

“Once it happened I just decided to get on with my life you know? I never complained about it from then on. I was happy enough to learn how to deal with it.”

Peter, 20

With eventually accomplishing stoma management, participants began to travel along a predictable path of acceptance and growth. Patients embraced the health their stoma offered them and flourished in the new found predictability of their daily lives.

 “…as time goes on it kind of becomes the best friend that no-one knows about. Like your imaginary friend making everything…making life that bit better.”

Michael, 30

With the formation of a stoma a new lease of life was granted to the participants with some describing a sensation of “rebirth” in likening their previous struggles to a past-life.

“A lot of people that know me know I have this day the 6th March 2009 and I say Michael alpha died that day. This is Michael beta. It’s a totally different feeling towards life.”

Michael, 30

Surprise as to the minimal impact of the stoma on work, sport and socialising was collectively demonstrated by participants. In fact, Peter felt the merits of his stoma were reiterated to him following the first stage of J-Pouch formation and the loss of health that ensued.

“So you realise how good the stoma is after the second operation when you’re sick again. You’re not half as sick as you were previously but it just seems like such a knock back.”

Peter, 20

The concept of post-traumatic growth was exemplified by Michael in particular; the only patient interviewed with a permanent end-ileostomy. Michael spoke of his interest in incorporating his experiences as an IBD patient and ostomate into his working life portraying a movement beyond his original level of psychosocial functioning and growth in this regard.

4. Discussion

This study provides a unique insight into the experiences of a cohort of young Irish males who are living with IBD and a faecal stoma. The continual struggle for autonomy resonated in different forms in all participants‟ discourses with the importance of self-control reiterated. This finding is well based in the existing literature^13-15. The efforts made by patients to suppress and mask erratic symptoms

and the struggle to achieve „health-related normality‟ correlated with a study by Hall¹⁵ which depicted the difficulties experienced by patients in tailoring their daily activities to accommodate their illness.

It was apparent in the discourses that participants believed their quality of life to correlate with the predictability of their bodily functions and the subsequent independence achieved. The “rebirth” illustrated in the discourses is in keeping with this sentiment with patients taking comfort from the stability the stoma offered them.This finding is encouraging and informative for prospective stoma patients and givessupport to the mainly anecdotal recommendations used previously by health professionals.

The initial shock and disgust felt by patients upon first seeing their stoma is well described in the literature^{11, 14}. This reaction was felt to be compounded in some instances, by the inadequacy of pre-operative information received. It is disappointing that despite the significant advances in the area of patient-centred care, the experiences of participants in this study mirrored the findings of Davis and

Eardley¹⁶ published in 1974 which found that pre-operative information was offered haphazardly and subject to inter-patient variability. The education of stoma patients has apparently not advanced in parallel with treatment as patients in this study spoke of being unaware their procedure involved the removal of their back passage. Taking into consideration the varying patient health pre-operatively, it is understandable that there is to be differences in the extent of education offered. However, for education to be non-existent as it was for some of the participants, forces the topic matter into the realm of satisfactory informed consent.

Following an initial period of shock, disbelief and even anger, the participants described moving along a similar trajectory. O‟Leary and Ickovics¹⁷ identified three possible outcomes following a traumatic event such as stoma formation: survival, recovery or thriving. The majority of participants in this study had arrived at the level of so-called recovery at the time of interviewing and had returned to their previous level of functioning in the areas of sport, socialising and work. Interestingly, the only patient who displayed evidence of thriving was also the only patient with a permanent stoma. Michael spoke of moving beyond his previous level of psychosocial functioning and illustrated growth in wanting to incorporate his experiences into his working life. While the other participants were satisfied with their quality of life, the distressing uncertainty of stoma reversal coupled with the inability to plan for the immediate future clearly hampered their thriving. That dealing with adverse life events such as chronic disease can precipitate personal growth has become an increasing area of interest clinical settings^{18, 19}. The therapeutic enhancement of adversarial growth holds potential as a means to enhance the psychological recovery of this patient group.

Consistent with the literature^{7, 10}, the vulnerability of this patient cohort is demonstrated in this study. Young adulthood is a time when individuals grapple with self-validation, social acceptance and direction, hence it is not surprising that this patient group are particularly affected by the negative psychosocial impact of IBD and a stoma⁷. Social acceptance was paramount to the participants’ perceived quality of life and they spoke openly of mechanisms used to portray an unblemished image to the public eye such as standing in close proximity to bathrooms while socializing. Participants reported, however, that a point came where the unpredictability and severity of their pre-operative symptoms necessitated that they effectively went into hiding to uphold this illusion. Increased public awareness and education in this regard may give confidence to and lessen the potential for social isolation in this patient group.

Manderson¹³ equates the control of bodily function to a pre-requisite for conventional adulthood. Similarly, Kelly and Field²⁰ proposed that bodily autonomy is a precondition for human development. Thus, one could hypothesize that in this patient group, with the loss of this usually innate function, a hampering of personal development and growth could result. Existing literature^{9, 13}, in which there is an overwhelming preponderance of middle-aged patients, places significant emphasis on the negative implications of a stoma on sexuality. Two of the five patients interviewed expressing concerns in this way, both of whom experienced the exacerbation of their illness in their early twenties and so are likely not to have been subject to social restrictions in the crucial years of sexual maturation. Sexual experimentation and expression in adolescents with chronic illness is well discussed in the literature albeit with contrasting conclusions drawn^{21, 22}. We feel further research is necessitated but that in the interim this finding may be a stimulus for the increased awareness of health professionals.

5. Limitations

This research is not without limitations. All data were garnered from a single interview with each participant. A second interview would have allowed the researcher to familiarize herself with the transcript and given the participants time to consider and develop upon issues raised in the interview resulting potentially in a richer data set.

Furthermore, the sample consisted solely of male Caucasians. It is arguable that other themes would have developed had there been a more diverse ethnic group with a female representation.

Body image and sexuality are difficult topics to broach and not openly discussed. Participants may have experienced uneasiness in exploring the impact of their stoma on this aspect of their daily lives. The interviewer being female and of a similar age may also have stunted responses.

With qualitative research there is the potential for researcher pre-conceptions to influence data analysis. Every effort was made to limit personal researcher bias in this study through the independent generation of themes by all authors.

6. Conclusion

This study offered young males with IBD and a stoma the opportunity to discuss their lived experiences while generating increased awareness among relevant health professionals as a consequence. It is encouraging that despite the obvious physical and psychological drawbacks of a stoma, participants universally branded these shortcomings minor relative to their diminished quality of life pre-operatively.

The significance of effective health professional-patient communication and the deleterious effects of inadequate patient education have been highlighted by this study. A research question has arisen at a local level with this study suggesting that a standardisation of pre-operative guidance offered to this patient cohort is necessary.

In conclusion, it is recommended that further research is undertaken which interrogates a key finding of this study, specifically:

What is the level and appropriateness of current pre-operative education and information received?

We feel that further exploration of patient satisfaction in this regard is warranted with a view to improving individuals’ perceptions and abilities to adjust to life with a stoma.

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