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Managing inflammatory bowel disease in primary care

Key learning points:

 - Understanding the difference between IBD and other bowel issues

 - Managing symptoms of these conditions in primary care

 - Following up with patients who are currently symptom-free

The prevalence of long-term conditions is increasing, affecting more than 15 million people in the UK1. Chronic conditions such as Crohn's disease and ulcerative colitis affect approximately 240,000 people in the UK.2 The new commissioning landscape is changing and faces challenges balancing the increasing burden of disease with costs of advances in medical care.3 The emphasis is on systematic management of chronic disease; managing long-term conditions in primary care and reducing inappropriate use of hospitals and face-to-face appointments. The question is can all long-term conditions be managed in primary care, particularly conditions such as Inflammatory bowel disease (IBD), where numbers encountered in general practice are small and healthcare professional knowledge of the disease is limited? This article aims to provide an overview of the aetiology, diagnosis and medical management of IBD and discusses the role of the primary care and practice nurse in managing these conditions.

Clinical features of IBD

Inflammatory bowel disease (IBD) is a long term chronic bowel condition disease comprising of two main diseases, Crohn's Disease (CD) and ulcerative colitis (UC). The aeitology of IBD is unknown and there is no known cure, although it is widely accepted that it results from a dysregulated immune response involving a complex interaction between environmental and genetic factors4.

UC is an inflammatory condition causing continuous mucosal inflammation and ulceration of the colon. The inflammation extends proximally uninterrupted from the rectum and may encompass the entire large bowel. The disease follows a relapsing and remitting pattern, with 'remitting' defined as a complete resolution of symptoms and mucosal healing and 'relapse' defined as a flare of symptoms to include rectal bleeding, abdominal pain, urgency to defecate, increase in stool frequency and the presence of abnormal colonic mucosa5.

Approximately 50% of patients with UC will relapse in any year and 30% will require surgery for colectomy and formation of a stoma6-8. Evidence suggests that patients with UC have an added risk of developing colorectal carcinoma (CRC)9. The relationship between UC and CRC has been studied extensively and a thirty year surveillance analysis showed that this risk is 2.5% after 20 years of disease duration, rising to 7% after 30 years and 10.8% at 40 years10. 

CD is characterised by patchy, transmural inflammation which can affect any part of the gastrointestinal tract, as opposed to UC which is continuous and affects only the large bowel. The main clinical symptoms in CD are: diarrhoea; abdominal pain; weight loss; anaemia; severe fatigue and lethargy. 

CD presents as deep ulcers within the mucosa and follows a different pattern to that of UC. CD may be fistulating (a tract from one organ to another organ, such as bowel to vagina, or a tract from bowel to the skin surface) or stricturing (narrowing of the lumen). 

Approximately one third of patients with CD develop complicated disease associated with fistulas, fissures and strictures.11 The cumulative mortality of patients with CD is twice that of the population with death predominantly related to sepsis, pulmonary embolism, immunsuppressive medical treatment and complications of surgery.12,13 Up to 50% of patients will require surgery in the first ten years.14

IBD is complicated by extraintestinal manifestations (EIMs) with up to 40% of patients affected by them15. The most common EIMs affect the joints, skin, eyes and hepatobiliary system and are directly related to the activity of the disease in the bowel: in general, if the disease is active, the likelihood of EIMs is increased. However, while some EIMs are disease activity related, large numbers such as ankylosing spondylitis, are independent of this. In terms of skin manifestations, patients often present with raised red painful patches which are typical of erythema nodosum.

Prevalence of IBD

There are approximately 240,000 people living with IBD in the UK. The prevalance of CD is 145 per 100,000, and UC 243 per 100,000. In a UK population of 60 million this equates to 87,000 people living with CD and 146,000 people living with UC.16 A recent systematic review reports these figure are rising, with Europe having the highest prevalence compared to North America, Asia and the Middle East.17 

Importantly, the incidence of CD in children has increased three fold from 1960 in the UK.2,18,19 This is mirrored both in Europe20 and North America.21 This continuing rise has clear implications for the substantial lifelong burden of this disease and the provision of specialists services. 

The cost of caring for patients with IBD in the UK is estimated to be in excess of £254 million per annum.22 This cost includes routine follow up appointments in secondary care, of which IBD patients account for 13% of all gastroenterology outpatient clinics appointments in the UK. Figures suggest that outpatient clinic follow up appointments account for up to one third of the total cost of IBD care.22-24The peak age of onset for IBD is between ages 15 to 30, even occuring outside of this age range, the economic burden of IBD is corresondingly high due to this age group, often leaving them unable to work and contribute to the economy.

Diagnosisng IBD 

There can often be a delay in referring and diagnosing suspected IBD as patients often present in primary care with non-specific symptoms that could be confused Irritable bowel syndrome (IBS). The major distinction between theses two conditions is the presence of 'reg-flag' indicators such as unintentional weight loss, rectal bleeding, and abnormnal biochemical markers including raised inflammatory markers (CRP, ESR) and anaemia., which necessitate a referal to seconary care.25 The diagnosis of IBD is made using clinical evaluation along with a combination of haematological, endoscopic and radiological investigations. Patients with IBD may also have 'sub-clinical' inflammation that produce IBS sype symptoms26. 

Faecal calprotectin is a simple and accurate non-invastive stool test that detects colonic inflammation and can help identify functional IBS related diarrhoea25. Table 2 highlights they key considerations during the patient consultation. 

Medical management of IBD 

The key objectives of treament are to increase the time the patient is in remission, avoid complications from uncontrolled active disease and establish an acceptable quality of life.

Medical interventions are aimed at symptom reduction by controlling the inflammatory process, and achievement of 'mucosal healing'.27, 28 It is suggested that complete mucosal healing can lead to improved outcomes and reduce the risk of complications of the disease.29 Medical therapy for IBD is evolving rapidly and follows a step up approach30 (Figure 1 - treatment pyramid). Treatments which aim to maintain remission for both UC and CD combine immunsuppressive drugs, targeting both the immunologic cascade, such as azathioprine and methotrexate, and biologic drugs, (infliximab and adalimumab).31  

The burden of IBD 

Recently EFFCA (European federation of Crohn's and ulcerative colitis organisation) has completed a comprehensive 24 country European wide survey which aimed to obtain a multinational perspective of the impact of living with IBD.32 The survey, which had nearly 5000 responses, found that diagnosis took longer than five years in 18% of the respondents, with 64% presenting to emergency care with symptoms of IBD prior to the diagnosis. 

This emphasises the difficulty in diagnosing IBD and the need for education in Primary Care. IBD impacts on the individual's daily life, education and employment. Unemployment and sick leave is more common in IBD patients compared to the general population. 33,34 

The role of primary care and IBD

There is ambiguity surrounding the role of primary care, GP and practice nurses concerning IBD. There are documented problems with diagnosing IBD in primary care and recognising it as a differential diagnosis with IBS, as patients report prolonged problems with initial diagnosis35 and treatment for IBD related problems prior to diagnosis.32 

The use of faecal calprotectin to assist in the diagnosis of IBD in primary care is currently under scrutiny by NICE. The test is designed to aid in the identification of those individuals who are at an increased risk of diseases characterised by inflammation of the bowel with individuals with increased levels of faecal calprotectin referred for further investigation. Vigilance for a differential diagnosis of IBD (see Table 2) combined with faecal calprotecin, will undoubtedly assist in the timely diagnosis of patients with suspected IBD. 

Many IBD centres now work with primary care within shared care protocols. This is not an “offloading” of work by secondary care but a move by the IBD team to bring together the healthcare professionals who may provide the best possible care at the right time and right place for the patient with IBD. 

Blood monitoring, annual reviews, medicines management reviews are all common occurrences with patients with LTCs, including patients with IBD. The “well” IBD patient may be 

reviewed in primary care by the practice nurse, supported by the IBD team. Education and support from the IBD team in managing and supporting these patients within primary care is of paramount importance if we are to meet the challenges of today's NHS.


Patients with IBD are predominantly managed by secondary care and follow a traditional, scheduled follow-up cycle, even when “well”, which is now unsustainable and unsatisfactory. Patients with IBD should have access to specialist care which is delivered according to their values and needs. 

There is also concern in the UK that services for patients with long term conditions are not orgnised to promote independence with silo working in primary and secondary care. There is a need to bring these together formally through the development of models of care. 

Shared care protocols and closer working with integrated care teams can bridge the gap between primary and secondary care for all patients with IBD. This is a challenging situation but one that is not unsurmountable.



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