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 about IBD

  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.

Overview and top tips

Overview of IBD

Ulcerative Colitis and Crohn’s Disease are the two main types of IBD, other sub-types include Microscopic Colitis (Collagenous Colitis and Lymphocytic Colitis), Indeterminate Colitis or Inflammatory Bowel Disease Unclassified) is used when the features lie somewhere between those of Ulcerative Colitis and Crohn’s Disease.

The symptoms can overlap with many other lower gastrointestinal conditions, such as 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.

Top tips

  1. Most patients are diagnosed in their teens and twenties, although IBD can develop in any age group from infants to the elderly.
  2. Diarrhoea is the most common symptom, but this does not present in all adults or up to 44% of children with IBD in whom delayed growth and development may occur. Other symptoms can include weight loss, abdominal pain or cramping, bloating, lethargy, fevers, night sweats, and anaemia.
  3. Family history of IBD and extra-intestinal manifestations, including skin, eye and joint problems should be considered increased signs for suspicion.
  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. 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
  7. Malabsorption can occur in patients, and patients can be at increased risk of osteoporosis and anaemia
  8. 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 (an uncommon chronic liver disease in which the bile ducts inside and outside the liver progressively decrease in size die to inflammation and scarring) or a strong family history of colorectal cancer.
  9. Extra-intestinal manifestations 

Diagnosing IBD and the use of faecal calprotectin

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 IBD in patients with unexplained fever, weight loss, anaemia, a family history of IBD or extra-intestinal manifestations (EIM) such as arthritis, erythema nodosum, pyoderma gangrenosum, primary sclerosing cholangitis, uveitis, iritis or episcleritis).  Up to 50% of patients with IBD experience at least one EIM, which can present before IBD is diagnosed.
  3. Diarrhoea is the most common symptom, but this is not present in all adults or up to 44% of children with IBD in whom delayed growth and development may occur. Other symptoms can include weight loss, abdominal pain or cramping, bloating, lethargy, fevers, night sweats, and anaemia. Constipation can occur in some patients.
  4. 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).
  5. 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) whose symptoms change. Inflammatory markers and faecal calprotectin can both be negative in some patients, therefore consider referring patients with persistent symptoms.
  6. A quick response is essential in the case of a severe, acute flare-up, which carries a small risk of death due to sepsis or acute kidney injury.

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

Examples of local referral pathways