Nurse, researcher and pioneer Dr Lesley Dibley is behind the University of Greenwich’s campaign to improve care for those with inflammatory bowel disease (IBD). She is on a mission give this marginalised group a voice and improve the way they are treated in healthcare. Surgery isn’t being presented as ‘the last resort’ – in almost all cases patients’ quality of life is dramatically enhanced. Read why here
Over 300,000 people in the UK have inflammatory bowel disease (IBD), a chronic, incurable relapsing-remitting condition accompanied by unpredictable bouts of fatigue, pain and urgency which can endure regardless of disease activity. Ulcerative colitis and Crohn’s disease are the commonest forms of IBD and, whilst the mainstay of treatment is medical management, a proportion of patients will require either a temporary ileostomy or permanent ileostomy (stoma surgery).
For many patients this option is viewed as the worst possible outcome. It’s not uncommon to hear patients say things like, ‘There was no way I was gonna be walking around with a bag of s**t attached to me’ and the prospect is accompanied by concerns about relationships, preferred social and intimate activities, pregnancy, employment and the stoma being visible beneath clothing to others. Findings from a recent study have dispelled many myths, and identified core features which are beneficial to patients facing stoma surgery – which I explore below in greater detail. This information is also relevant to practice staff and GPs who will play a vital role in the ongoing care and recovery of those with IBD.
Patients with IBD often view the prospect of a stoma negatively. In addition to the concerns outlined above, their response is often driven by socio-cultural rules about the containment and control (particularly amongst adults) of bodily functions and waste products; having a stoma confronts patients emotionally and visually with the evidence of their lack of control. It is these aspects, and not the debilitating status of their disease, which prompts many to try anything and everything else in a quest to avoid the stoma surgery identified by gastroenterologists and colorectal surgeons as necessary. In summary, patients’ decision-making is emotionally and socially-driven, whilst clinicians’ recommendations are disease-driven.
Patient experiences of surgery
Patients’ responses to needing stoma surgery are linked to the duration and severity of their illness, and the quality of the stoma. Those who are diagnosed in an acute state, and who progress very rapidly to colectomy, experience a rapid change in their body image, health status and imagined future. However, those who have been ill for several years, with a gradual and chronic impact on their health, have not only had longer to consider the prospect of stoma surgery – and know it as a possibility – but are also more likely to experience a greater benefit to their overall sense of wellbeing, since the contrast between the pre- and post-surgery self is greater.
A major contributory factor in the patient experience is the quality of the stoma. Temporary stomas are often formed as loop ileostomies, which are usually more cumbersome to manage, and more likely to leak. In contrast, an end ileostomy is much smaller and neater, and gives a better temporary stoma experience. The study found that patients base their assessment of their future ability to live permanently with a stoma on their experience of a temporary stoma and recommends that, wherever surgically possible, temporary stomas should be formed as end ileostomies.
The right age for a stoma
Typically, clinicians in the study assumed that young people would want to avoid a stoma, whilst older people were considered less likely to be bothered about it, due to different perceptions of body image and relationships. The study identified that younger people (late teens to early 30s) often reported that having a stoma had enabled them to travel, enjoy sporting and social activities, study, work and develop intimate relationships – which their pre-stoma IBD had disrupted significantly. In contrast, older people were often in established relationships, but had concerns about managing their stoma as their health declined due to natural ageing, and other co-morbidities – such as arthritis in their hands – emerged.
Adjusting to life with a stoma
Existing evidence suggests that it takes patients about 12 weeks to come to terms with the practical management of their stoma; there is no convincing data on the time required to adjust psychologically to a permanent stoma, although the study suggests that, for some, this may never happen. ‘It took two years for me to adjust, if indeed I have …’ said one . Those with a temporary stoma, in place for a few months, are less likely to commit the emotional energy required to adjust, and more likely to put life ‘on hold’ until the stoma is reversed and they are restored to ‘normal’.
In this study patients and clinicians reported that the most beneficial support was for patients to be matched with a stoma ‘buddy’ – someone of the same gender and in a similar age group and life situation (for example, married, with children, working) – who was living well with a stoma. ‘You can have the loveliest IBD or stoma nurse in the world, but what you need is someone who’s living with it…’ The patient and buddy should be introduced before surgery, giving the patient the opportunity to ask questions and address their concerns with someone who really knows what it is like to live permanently with an ileostomy. Another useful technique is to encourage the patient, prior to surgery, to wear an ileostomy bag with a little water in it, to get used to the feel… ‘I tried it, and found that I didn’t notice it that much, which was encouraging’ …
Is it worth it?
For the majority of patients with IBD, outcomes of stoma surgery are much better than anticipated, with many commenting that the overall improvement in their general health, wellbeing and quality of life is so great that they should have opted for surgery sooner.
GPs and practice nurses have a role to play in hearing the concerns of patients who may need stoma surgery, linking them with a carefully selected stoma buddy, and outlining many of the benefits of stoma surgery reported in this study.
Learn more about Dr Dibley by watching this short video
Read more about Dr Dibley’s research here.