Inflammatory Bowel Disease Toolkit

Inflammatory Bowel Disease (IBD) affects at least 1 in 250 of the UK population and the prevalence is rising. Many patients report a delay in getting a diagnosis, the longer a diagnosis takes to make, the more likely a patient is to require aggressive medical therapy or even surgery.

Managing flares, supporting patients to stay well and monitoring long-term risks are all vital aspects of care.

This Inflammatory Bowel Disease Toolkit aims to be a 'one-stop-shop', a user-friendly guide to IBD for GPs and other primary care professionals.

Key facts

  1. The prevalence of IBD is rising in the UK, particularly in children, with peak diagnosis in the teens and twenties, although it can occur at any age.
  2. The cause is multifactorial — genetics and environmental factors play a part.
  3. Problems outside the gastrointestinal tract can occur, such as primary sclerosing cholangitis, skin problems, and iritis.
  4. There is no cure — treatment is focused on achieving and maintaining remission, with relapses likely.
  5. There is a 20-30% chance of surgery with Ulcerative Colitis, a 70% chance with Crohn’s Disease.
  6. Patients with extensive disease may develop complications that are potentially life-threatening, such as complete blockage or perforation of the bowel.
  7. There is an established link between IBD and an increased risk of developing colorectal cancer.
  8. The lifetime medical costs associated with the care of a person with IBD can be comparable to those with diabetes or cancer.
  9. The symptoms of IBD can severely affect self-esteem and social functioning, particularly among the young and newly diagnosed.
  10. Education, working, social and family life can be disrupted by the unpredictable occurrence of flare-ups.

Top tips

  1. Be aware that most patients are diagnosed in their teens and twenties, although IBD can develop in any age group from infants to the elderly
  2. Consider red flags and increased signs for suspicion, including family history of IBD and extra-intestinal manifestations
  3. Note that, while diarrhoea is the most common symptom, this does not occur up to 44% of children with IBD in which failure to thrive may be a feature, and atypical symptoms can occur in adults
  4. Faecal calprotectin testing can help differentiate between IBD and Irritable Bowel Syndrome, facilitating appropriate referral, and is recommended by NICE – however, note that IBD can occur in patients with a previous diagnosis of Irritable Bowel Syndrome (IBS)
  5. Support for the significant psychological and nutritional impact of IBD is very important
  6. A quick response is essential in the case of a severe, acute flare-up, which carries a small risk of death
  7. Multidisciplinary team working between primary and secondary care, drawing on the skills and expertise of IBD nurses, is key to supporting patients and ensuring effective shared care
  8. Steroids can be useful for treating flare-ups, but an appropriate dose and course should be used - it is important not to rely on or overuse steroids and rectal therapy should be considered where appropriate
  9. Malabsorption can occur in patients, and patients can be at increased risk of osteoporosis and anaemia
  10. Patients with IBD have an increased risk of bowel cancer, particularly in those with more extensive or active disease. For patients with Ulcerative Colitis, surveillance should begin 10 years after diagnosis and be repeated every 3-5 years unless there are specific risk factors including primary sclerosing cholangitis or a strong family history of colorectal cancer

Identifying IBD

The symptoms can overlap with many other lower gastrointestinal conditions, including bowel cancer, coeliac disease, endometriosis and ovarian cancer, and IBD can occur in patients with a previous diagnosis of Irritable Bowel Syndrome (IBS).

Primary care pathways for investigating adults with persistent lower gastrointestinal symptoms who do not have red flag symptoms suggestive of colorectal cancer should include testing of inflammatory markers and coeliac antibodies, and excluding an infective cause.  If these tests are normal, then faecal calprotectin testing should be undertaken.

Example local referral pathways

Faecal calprotectin 

NICE diagnostics guidance 11 recommends faecal calprotectin testing as an option to support clinicians in differentiating between IBD and IBS in adults with recent-onset lower gastrointestinal symptoms if cancer is not suspected.  This approach is supported by the British Society of Gastroenterology

Managing IBD

Inflammatory Bowel Disease follows an often unpredictable, relapsing-remitting course and, as a result, education, employment, personal relationships and social and family life may all be affected. The frequent and urgent need for the toilet, together with pain and fatigue, can severely affect self-esteem and social functioning, particularly among the young and newly diagnosed.

The multidisciplinary team is a key part of achieving the top 10 essentials of a good IBD service drawn up by Crohn’s and Colitis UK.  Primary care should be part of the multidisciplinary team.  The patient’s GP has a key role in the initial diagnosis, ongoing support, prescribing and monitoring of medication (with shared-care protocols where appropriate), as well as supporting the patient to return to education, work or normal family life as soon as possible.

Top 10 essentials of a good IBD team

(taken from My Crohn’s and Colitis Care)


Malnutrition in Crohn’s Disease is common with up to 75% of adult inpatients experiencing weight loss or rapid weight gain (due to medications such as steroids).  

Growth retardation has been reported in up to 40% of children and adolescents and up to 60% have decreased muscle and body fat stores. Maintaining a balanced weight is an important aspect of IBD management.  Referral to a specialist dietitian is advisable.

Psychological support

IBD can have a profound psychological impact on patients, including low self-esteem, depression and anxiety, related to the nature and unpredictable occurrence of symptoms, effects of treatment, fear of surgery and its consequences, disruption to personal and social relationships, family life, education and work.

Contraception, fertility & pregnancy

Less common forms of IBD

Extra-Intestinal manifestations of IBD

Up to 50% of patients with IBD experience at least one extra-intestinal manifestation (EIM), which can present before IBD is diagnosed. EIMs adversely impact upon patients’ quality of life and some, such as primary sclerosing cholangitis (PSC) or venous thromboembolism (VTE), can be life-threatening.

The probability of developing EIMs increases with disease duration and in patients who already have one EIM.  EIMs are more common in Crohn’s Disease than Ulcerative Colitis, particularly in patients with colonic Crohn’s Disease; some EIMs, such as iritis/uveitis, are more common in women, whereas PSC and ankylosing spondylitis are more common in males. Most EIMs run in parallel with intestinal disease activity.


There is currently no cure for IBD.  Aminosalicylates, corticosteroids, biologic agents, and immunomodulating drugs are the mainstay of medical management for inducing and maintain remission depending on the type and severity of disease, side-effects, contraindications and patient age and choice.  For Crohn’s Disease, enteral nutrition is often the therapy of choice in children and can be used to induce remission in adults.  Around 50% of patients experience at least one relapse each year.


Footnote: 5ASAs not usually indicated in Crohn’s Disease



Colorectal carcinoma

Resources for training, appraisal and research

Training resources

  • Easily Missed: Inflammatory Bowel Disease, BMJ Learning
  • Multiple Choice Questions linked to Guidelines in Practice IBD Overview Article (registration required)
  • RCGP and Crohn’s and Colitis UK E-learning Module (in development)

Resources for appraisal and personal development

  • Journey to diagnosis audit tool (in development)

Background resources for professionals

Resources and guidance for patients and carers

IBD can be a very difficult condition to deal with for patients and carers, which can impact profoundly on every aspect of a person’s life.  Getting the right information and support can make all the difference for individuals to enable them to manage their condition and their life with IBD.

Crohn’s and Colitis UK

Crohn’s and Colitis Companion online guide to reliable and practical information online – from the NHS, charities, IBD bloggers and publications on the Crohn’s and Colitis UK website.  

Crohn’s and Colitis UK is an accredited member of the Information Standard scheme for health and social care information producers.  All publications on a wide range of subjects, including managing symptoms, diet, medication, education, employment and welfare benefits are research-based and produced in consultation with patients, carers, medical advisers and other health professionals. Confidential support services provide practical information and support – 0300 222 5700,


CICRA offers literature, telephone help, a ‘Can’t Wait’ toilet card, an E-Pal scheme for children and parents and organises family IBD information days  in all regions of the UK.  This gives families, children and young  adults the opportunity to ‘meet the specialists’ in small discussion groups and importantly for children and young people to be able to mix with others in their own age group.

IA – the ileostomy and internal pouch Support Group 

IA is a support group run by and for people with ileostomies and internal pouches with the primary aim of helping people who have had their colon removed return to a full and active life as soon as possible after surgery.

IBD Relief

IBD Relief is an information-sharing platform to help educate, support and guide those affected by Inflammatory Bowel Disease and improve their quality of life.


Core produces patient information leaflets and factsheets on a wide range of conditions affecting the gut, liver and pancreas.


PINNT provides mutual support and understanding to adults and children and their families adapting to life on home artificial nutrition. PINNT provides this support direct via local and regional groups, online via forums and literature and a national telephone and email helpline.

IBS Network

The IBS Network provides information and support for people with irritable bowel syndrome and those who care for them and works alongside healthcare professionals to facilitate self-care.

IBD Passport

IBD Passport is an award winning website that aims to provide comprehensive, practical and reliable information on all aspects of travelling with Crohn's Disease or Ulcerative Colitis.

NHS Approved Health Apps

NHS approved health apps can be found here

Information for NHS managers and commissioning organisations

Cost and impact of Inflammatory Bowel Disease

  • The lifetime medical costs associated with the care of a person with IBD are comparable to those of a person with diabetes or cancer.  
  • An estimate of the annual average cost per patient of up to £3,000 in 2006 would result in a likely annual average cost to the NHS based on prevailing estimates of prevalence of £900 million.
  • One half of all direct annual healthcare costs associated with IBD are related to the inpatient management of a minority of patients who need intensive medical or surgical intervention.
    It is expected that with the increased use of biologic agents, the number of patients requiring surgical intervention will fall. (IBD Standards Update 2013)

Service requirements

  • NHS managers and commissioning organisations should review the local provision of services for patients with IBD and ensure all key components recommended in the IBD Standards are available.
  • Clear diagnostic and referral pathways should be in place such that all people with suspected IBD are seen within 4 weeks of referral.
  • Faecal calprotectin testing should be commissioned as part of this pathway and available to primary care—this is likely to be cost effective in reducing colonoscopy rates and avoids people have to undergo unnecessary tests. 
  • Effective shared care agreements and drug monitoring protocols should be in place to ensure patient safety and coordinated care.
  • IBD nurse helplines, patient portals and patient education support self-management and facilitate responsive and cost-effective care.

The toolkit has been developed in partnership with the Clinical Innovation and Research Centre. Please send any comments or suggestions to Any agreed updates will be made on a routine basis, unless immediately necessary for factual reasons.

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