Gastrointestinal
Crohn's disease
Last revised in May 2024
Crohn's disease is a chronic, relapsing-remitting, non-infectious inflammatory disease of the gastrointestinal tract
Crohn's disease: Summary
- Crohn's disease is a chronic, relapsing-remitting, non-infectious, inflammatory disease of the gastrointestinal tract.
- The inflammation involves discrete parts of the gastrointestinal tract, anywhere from the mouth to the anus, and affects the full thickness of the intestinal wall.
- Extra-intestinal manifestations, including abnormalities of the joints, eyes, liver, and skin, have been reported in 20% of people (or more) with Crohn's disease, especially people with colonic Crohn’s disease.
- Crohn's disease is thought to be an immune-mediated condition caused by environmental triggering events in genetically susceptible people. Risk factors include a family history of inflammatory bowel disease, smoking, previous infectious gastroenteritis, and taking medications such as nonsteroidal anti-inflammatory drugs (NSAIDs).
- Possible complications of Crohn's disease include psychosocial impact, abscesses, strictures, fistulas, anaemia, malnutrition, faltering growth and delayed puberty (in children), and cancer of the small and large intestine.
- Crohn's disease should be suspected in children or adults with:
- Persistent diarrhoea (including nocturnal diarrhoea) with possible blood or mucus in the stool.
- Abdominal pain or discomfort.
- Weight loss, faltering growth, or delayed puberty (in children).
- Non-specific symptoms such as fatigue, malaise, anorexia, or fever.
- On examination there may be:
- Abdominal tenderness or mass, for example, in the right lower quadrant.
- Perianal pain or tenderness, anal or perianal skin tags, fissure, fistula, or abscess.
- Signs of malnutrition and malabsorption.
- Abnormalities of the joints, eyes, liver, and skin.
- If Crohn's disease is suspected, the person should be referred to secondary care for confirmation of the diagnosis and initiation of treatment.
- If the person is systemically unwell with symptoms of bloody diarrhoea, fever, tachycardia, or hypotension, emergency hospital admission should be arranged.
- If hospital admission is not indicated, urgent referral to a paediatric gastroenterologist for children or gastroenterologist for adults should be arranged.
- Follow up of a person with confirmed Crohn's disease in primary care includes:
- Assessing the impact of symptoms on daily functioning.
- Offering sources of information and support.
- Encouraging smoking cessation (if needed).
- Assessing osteoporosis risk.
- Ensuring the person has follow-up arranged with a gastroenterology specialist. Drug treatment for the induction and maintenance of remission should always be initiated by a specialist.
- Prescribing and monitoring specialist drug treatments, if a shared-care agreement is in place.
- Assessing for symptoms of disease relapse.
- Arranging referral to an appropriate specialist if there are suspected extra-intestinal manifestations.
- Giving appropriate advice about vaccinations (if needed).
- Arranging referral for pre-conception planning, if appropriate, to ensure that drug treatment is optimized before trying to conceive.
Have I got the right topic?
From age 6 months onwards.
This CKS topic covers the management of Crohn's disease in primary care.
This CKS topic does not cover the management of extra-intestinal manifestations of Crohn's disease. It does not cover in detail specialist medical or surgical management of Crohn's disease.
There are separate CKS topics on Anal fissure, Gastrointestinal tract (lower) cancers - recognition and referral, Irritable bowel syndrome, and Ulcerative colitis.
The target audience for this CKS topic is healthcare professionals working within the NHS in the UK, and providing first contact or primary healthcare.
How up-to-date is this topic?
Changes
May 2024 — reviewed. A literature search was conducted in May 2024 to identify evidence-based guidelines, UK policy, systematic reviews, and key randomized controlled trials published since the last revision of the topic. Recent epidemiology figures have been added and detail added on the management of a flare-up of Crohn's disease.
Previous changes
December 2023 — minor update. Recommendations relating to COVID-19 infection have been removed from this topic.
August 2020 — minor update. Broken URL link updated and typographical error corrected.
April 2020 — minor update. New management scenario created to provide information regarding COVID-19.
May 2019 — minor update. Information from the updated National Institute for Health and Care Excellence (NICE) clinical guidelines Crohn's disease. Management in adults, children and young people (full NICE guideline) and Crohn's disease: management have been added to the topic. No major changes to recommendations have been made.
August to September 2017 — reviewed. A literature search was conducted in July 2017 to identify evidence-based guidelines, UK policy, systematic reviews, and key randomized controlled trials published since the last revision of the topic. The topic has undergone significant restructuring. The recommendations on the diagnosis and management of confirmed Crohn's disease have been amended in line with current evidence. The sections on specialist investigations and management have been updated and expanded. The Prescribing information section has been deleted and links made to other relevant CKS topics.
December 2016 — minor update. The section on adverse effects of corticosteroids has been updated in line with the manufacturer's Summary of Product Characteristics. Myocardial ischaemia or infarction and arrhythmia have been added as possible adverse effects of infliximab in line with the manufacturer's Summary of Product Characteristics.
November 2016 — minor update. Adverse effects of loperamide have been updated in line with the Food and Drug Administration (FDA) drug safety communication, warning that exceeding the maximum dose can cause serious cardiac problems including QT interval prolongation, Torsades de pointes or other ventricular arrhythmias, syncope, and cardiac arrest.
September 2016 — minor update. The brand name Octasa® has been added to the Prescribing information section as another licensed and available preparation of mesalazine, in line with the British National Formulary.
April 2015 — minor update. Text updated to reflect a new law on drugs and impaired driving, in line with the Department for Transport Guidance for health professionals on drug driving.
February 2013 — minor update. The 2013 QIPP options for local implementation have been added to this topic.
December 2012 — reviewed. A literature search was conducted in November 2012 to identify evidence-based guidelines, UK policy, systematic reviews, and key randomized controlled trials (RCTs) published since the last revision of this topic. No major changes to clinical recommendations have been made.
August 2012 — text in the Prescribing Information section has been updated to clarify recommendations for the use of oral hormonal contraception while taking metronidazole or ciprofloxacin.
June 2011 — minor update to the text to reflect guidance issued by the British Society of Gastroenterology. The 2010/2011 QIPP options for local implementation have been added to this topic. The National Institute for Health and Care Excellence (NICE) have issued guidance on colonoscopic surveillance of people with Crohn's disease.
February to June 2010 — this is a new CKS topic. The evidence-base has been reviewed in detail, and recommendations are clearly justified and transparently linked to the supporting evidence.
Update
New evidence
Evidence-based guidelines
No new evidence-based guidelines since 1 May 2024.
HTAs (Health Technology Assessments)
- NICE (2025) Mirikizumab for previously treated moderately to severely active Crohn's disease. National Institute for Health and Care Excellence. https://www.nice.org.uk/ [Free Full-text]
- NICE (2025) Guselkumab for previously treated moderately to severely active Crohn's disease. National Institute for Health and Care Excellence. https://www.nice.org.uk/ [Free Full-text]
Economic Appraisals
No new economic appraisals relevant to England since 1 May 2024.
Systematic reviews and meta-analyses
No new Systematic reviews and meta-analyses since 1 May 2024.
Primary evidence
- Peyrin-Biroulet, L., Chapman, C., Colombel, J., et al. (2024) Risankizumab versus Ustekinumab for Moderate-to-Severe Crohn’s Disease. New England Journal of Medicine. https://www.nejm.org/ [Abstract]
- Lund, K., Ryg, J., Knudsen, T., Kjeldsen, J., et al. (2025). The prevalence of polypharmacy increases with age among patients with inflammatory bowel disease: A nationwide cohort study. British Journal of Clinical Pharmacology. [Abstract]
New policies
No new national policies or guidelines since 1 May 2024.
New safety alerts
No new safety alerts since 1 May 2024.
Changes in product availability
- New product Yuflyma 20 mg solution is indicated for the treatment of moderately to severely active Crohn's disease in paediatric patients (from 6 years of age) who have had an inadequate response to conventional therapy including primary nutrition therapy and a corticosteroid and/or an immunomodulator, or who are intolerant to or have contraindications for such therapies. See more here.
- New product Uzpruvo 45 mg solution is indicated for the treatment of adult patients with moderately to severely active Crohn's disease who have had an inadequate response with, lost response to, or were intolerant to either conventional therapy or a TNFα antagonist or have medical contraindications to such therapies. See more here.
- New product Amgevita HCF (adalimumab) 40 mg solution for injection in pre-filled pen and 20mg and 40mg in pre-filled syringe. Biosimilar licensed for treatment of rheumatoid arthritis, juvenile idiopathic arthritis, polyarticular juvenile idiopathic arthritis, ankylosing spondylitis, psoriatic arthritis, hidradenitis suppurativa, psoriasis, Crohn's disease, ulcerative colitis, and uveitis. See more here.
- Skyrizi (risankizumab) 180 mg solution for injection in cartridge. This is a new strength and presentation of risankizumab, a monoclonal antibody that blocks IL-23 antagonist, licensed for treatment of Crohn's disease and ulcerative colitis. Product range for this indication also includes 360mg cartridge, and 600mg infusion. See more here.
- New product Imraldi 40 mg solution for injection is indicated for treatment of moderately to severely active Crohn's disease, in adult patients who have not responded despite a full and adequate course of therapy with a corticosteroid and/or an immunosuppressant; or who are intolerant to or have medical contraindications for such therapies. See more here.
- New product Steqeyma (ustekinumab) 45 mg solution for injection in pre-filled syringe. This biosimilar is licenced for the treatment of plaque psoriasis, paediatric plaque psoriasis, psoriatic arthritis and Crohn’s disease. Unlike the originator product, Stelara, it is not licensed for the treatment of ulcerative colitis. See more here.
- New product Otulfi (ustekinumab) 130 mg concentrate for solution for infusion. This biosimilar to the reference product Stelara, is licensed for treatment of Crohn's Disease and ulcerative colitis. See more here.
- New product Otulfi (ustekinumab) 45 mg and 90 mg solution for injection in pre-filled syringe. This biosimilar to the reference product Stelara, is licensed for treatment of plaque psoriasis, paediatric plaque psoriasis, psoriatic arthritis, Crohn's disease, ulcerative colitis. See more here.
- New product Omvoh (mirikizumab) 100 + 200 mg Solution for injection in pre-filled pen. New strength (200mg) used in addition to existing 100mg pen, licensed for treatment of adults with moderately to severely active Crohn's disease who have had inadequate response with, lost response to, or were intolerant to either conventional therapy or a biologic treatment. See more here.
- New product WEZENLA is indicated for the treatment of adult patients with moderately to severely active Crohn's disease who have had an inadequate response with, lost response to, or were intolerant to either conventional therapy or a TNFα antagonist or have medical contraindications to such therapies. See more here.
- New product Tremfya (guselkumab) 200 mg concentrate for solution for infusion. This is a new presentation of the IL-23 inhibitor, licensed for treatment of adult patients with moderately to severely active Crohn's disease or Ulcerative Colitis. Tremfya is also available as 100mg pre-filled pens and 200mg PushPen pre-filled pen device. See more here.
- New product Tremfya (guselkumab) 100 mg PushPen solution for injection in pre-filled pen, is licensed for the treatment of Crohn's disease. See more here.
- New product Otulfi (ustekinumab) 45 mg Solution for injection is a new presentation of Otulfi in a vial, licensed for subcutaneous administration, to treat adult and paediatric Crohn's disease. See more here.
- New product Remsima (infliximab) 40mg/1ml concentrate for Solution for infusion vial. This new formulation is licensed for the treatment of rheumatoid arthritis, Crohn’s disease, ulcerative colitis, ankylosing spondylitis, psoriasis and psoriatic arthritis. It contains sorbitol and is contra-indicated in patients with hereditary fructose intolerance. See more here.
Goals and outcome measures
Goals
To support primary healthcare professionals to:
- Be aware of when to suspect Crohn's disease early in the course of the disease.
- Refer appropriately to secondary care to confirm the diagnosis and guide management.
- Ensure people follow specialist management plans to induce and maintain remission of Crohn's disease.
- Minimize the risk of disease complications.
- Optimize the physical and psychosocial growth and development of children with Crohn's disease.
Outcome measures
No outcome measures were found during the review of this topic.
Audit criteria
- National Institute for Health and Care Excellence (NICE) audit criteria exist regarding specialist drug treatments and therapeutic monitoring, which are relevant for secondary care. These are available at www.nice.org.uk/guidance/cg152/resources.
QOF indicators
No QOF indicators were found during the review of this topic.QIPP - Options for local implementation
- Antibiotic prescribing — especially quinolones and cephalosporins
- Review and, if appropriate, revise prescribing and local policies that relate to antimicrobial stewardship to ensure these are in line with the NICE guideline on antimicrobial stewardship.
- Review and, if appropriate, optimise current prescribing practice and use implementation techniques to ensure prescribing is in line with Public Health England (PHE) guidance on managing common infections, the UK Health Security Agency guidance Start smart − then focus, local trust antimicrobial guidelines and the Antimicrobial Stewardship in Primary Care collaboration TARGET antibiotics toolkit.
- Review the following against local and national prescribing criteria: total volume of antibiotic prescribing; prescribing of quinolones, cephalosporins, co-amoxiclav and other broad-spectrum antibiotics.
NICE quality standards
The following National Institute for Health and Care Excellence (NICE) quality standards are relevant for this CKS topic:
- People with suspected inflammatory bowel disease have a specialist assessment within 4 weeks of referral.
- Services provide age-appropriate support from a multidisciplinary team for people with inflammatory bowel disease, and their family members or carers.
- People having surgery for inflammatory bowel disease have it undertaken by a colorectal surgeon who is a core member of the inflammatory bowel disease multidisciplinary team.
- People receiving drug treatment for inflammatory bowel disease are monitored for adverse effects.
Background information
What is it?
- Crohn's disease is a chronic, relapsing-remitting, non-infectious inflammatory disease of the gastrointestinal tract.
- The inflammation involves discrete parts of the gastrointestinal tract, anywhere from the mouth to the anus; these are called 'skip lesions' because there are unaffected areas between lesions.
- The full thickness of the intestinal wall is inflamed, in contrast to the inflammation in ulcerative colitis, which is limited to the intestinal mucosa.
- In a population-based study (n = 306), Crohn's disease was located in the terminal ileum in 45%, the colon in 32%, the ileocolon in 19%, and the upper gastrointestinal tract in 4% of people [Thia, 2010].
- Extra-intestinal manifestations, including abnormalities of the joints, eyes, liver, and skin, have been reported in more than 20-40% of people with Crohn's disease, especially people with colonic Crohn’s disease [BMJ Best Practice, 2023].
- Crohn's disease and ulcerative colitis are collectively known as 'inflammatory bowel disease'.
- In about 5% of people, it is not possible to differentiate histologically between Crohn's disease and ulcerative colitis, and the term 'inflammatory bowel disease type-unclassified' (previously known as 'indeterminate colitis') may be used.
[Gomollon, 2017; NICE, 2019; BMJ Best Practice, 2023; Ranasinghe, 2024]
What are the causes and risk factors?
- The causes of Crohn’s disease are widely debated, and no factor has consistently met the criteria necessary to be recognized as the sole or major cause of the condition [NICE, 2019]. It is thought to be an immune-mediated condition caused by environmental triggering events in genetically susceptible people [Gomollon, 2017; BMJ Best Practice, 2023].
- Factors likely to play a role in the development of the disease include:
- Family history — a family history of Crohn's disease is present in about 25–40% of children, and siblings of a person with Crohn's disease are 17–35 times more likely to develop the condition than the general population [Akobeng, 2008]. A genetic component has also been suggested by large concordance studies in twins in northern Europe [Baumgart, 2012; Kalla, 2014].
- Smoking — the risk of Crohn's disease is increased in smokers (in contrast to ulcerative colitis, where the risk is decreased). A meta-analysis found the odds ratio for the risk of Crohn's disease in smokers compared with non-smokers to be 1.76 [Mahid, 2006]. In addition, smoking may increase the risk of disease relapse [Kalla, 2014] and the need for surgical resection [Mowat, 2011].
- Infectious gastroenteritis — the risk of Crohn's disease is increased four-fold following an episode of infectious gastroenteritis, particularly in the following year; however, the absolute risk is low [Gomollon, 2017].
- Appendicectomy — the risk of Crohn's disease increases early after an appendicectomy and decreases to that of the general population about 5 years postoperatively. A meta-analysis found that the relative risk of Crohn's disease within a year post-appendicectomy was 6.7, and after 5 years, the relative risk was 1.1 [Kaplan, 2008]. Subsequent research, however, has found conflicting evidence for this association, which may be related to diagnostic difficulties in detecting Crohn's disease in these people [Baumgart, 2012].
- Drugs — nonsteroidal anti-inflammatory drugs (NSAIDs) may increase the risk of relapse or exacerbation of inflammatory bowel disease (IBD), but the absolute risk is low [Gomollon, 2017]. The risk of IBD may be increased in women using oral contraceptive drugs; a meta-analysis of 14 studies (n =75,815) of people with IBD found that the pooled relative risk for Crohn's disease for women currently using an oral contraceptive was 1.46 [Cornish, 2008].
How common is it?
- The exact incidence and prevalence of Crohn's disease are not known, as detection rates and diagnostic criteria differ between studies. However, the estimated incidence and prevalence of Crohn's disease is thought to be stable or decreasing in the US and Europe, but increasing in the newly industrialised countries of Asia, South America, and the Middle East [BMJ Best Practice, 2023].
- The incidence of Crohn's disease in Europe ranges between 0.4 (in Moldova) to 22.8 (in the Netherlands) per 100,000 person-years [Zhao, 2021].
- The incidence of Crohn's disease in the UK is about 83 per million people per year [Loftus Jr, 2004] and 5.2 per 100,000 children per year [Sandhu, 2010].
- The incidence of the disease increased markedly between the 1950s and 1980s [Mowat, 2011].
- The prevalence of Crohn's disease is 10.6 per 100,000 people in the UK [Molodecky, 2012].
- A general practice serving 2000 people will have about four people with inflammatory bowel disease, and a new case of Crohn's disease will be identified every 7 years on average [Cummings, 2008].
- Crohn's disease presents most commonly in adolescence and early adulthood, but it may occur at any age [Molodecky, 2012; Kalla, 2014].
- About 20–30% of cases present before the age of 20 years [Oliveira, 2017].
- The median age at diagnosis is about 30 years [Molodecky, 2012].
- It occurs in men and women at approximately equal rates [Molodecky, 2012; Kalla, 2014].
What are the complications?
- Complications of Crohn's disease include:
- Psychosocial impact — for example on school, work, or leisure activities.
- Intestinal complications, including:
- Intestinal strictures — where the intestine narrows and partially or completely obstructs the passage of bowel contents.
- Fistulae — where the bowel wall is perforated, allowing faecal matter to track through to adjacent organs, such as the intestine, bladder, vagina, abdominal wall, or perianal skin. Fistulae develop in about one-quarter of people with Crohn’s disease.
- Perianal disease — a frequent complication of colonic and ileocolonic disease, characterized by fissures, fistulae, or abscesses.
- Acute dilation and perforation of the gastrointestinal tract.
- Significant haemorrhage (especially if the disease affects the colon).
- Anaemia — due to iron deficiency (through blood loss or nutritional deficiency), vitamin B12 or folate deficiency (through decreased absorption), or anaemia of chronic disease.
- Malnutrition, faltering growth, and delayed pubertal development (in children) — may be due to reduced oral intake, increased nutrient requirements, increased gastrointestinal losses and malabsorption, chronic corticosteroid use, and drug-nutrient interactions.
- Cancer — there is evidence of an increase in the incidence of cancer of the small and large intestine in people with Crohn’s disease. The risk of developing colorectal cancer for people with ulcerative colitis is estimated as 2% after 10 years, 8% after 20 years, and 18% after 30 years of disease. The risk of developing colorectal cancer for people with Crohn's disease is considered to be similar to that for people with ulcerative colitis with the same extent of colonic involvement.
[Gionchetti, 2017; NICE, 2019; NICE, 2022; BMJ Best Practice, 2023; Gordon, 2023]
What are the extra-intestinal manifestations of Crohn's disease?
Extra-intestinal manifestations are more common in people with Crohn's colitis compared with other areas of gastrointestinal tract involvement. Be aware that extra-intestinal manifestations may present before gastrointestinal symptoms become prominent.
- Extra-intestinal manifestations related to disease activity include:
- Pauci-articular arthritis
- This affects fewer than five large joints, such as the ankles, knees, hips, wrists, elbows, and shoulders.
- It is the most common extra-intestinal manifestation of inflammatory bowel disease (IBD) and affects 10–35% of people with Crohn's disease.
- It is usually asymmetric, acute, and self-limiting (lasting for weeks rather than months), and joints tend not to be permanently damaged.
- There is often associated enthesitis (inflammation where a tendon attaches to a bone), tenosynovitis (inflammation of a tendon and its sheath), or dactylitis (inflammation of an entire finger or toe).
- Erythema nodosum
- Tender, red or violet subcutaneous nodules, 1–5 cm in diameter.
- Usually on the anterior tibial area or extensor surfaces of the legs or arms.
- Aphthous mouth ulcers
- Painful, clearly defined, round or ovoid, shallow ulcers of the smooth surfaces of the mouth and underside of the tongue.
- See the CKS topic on Aphthous ulcer for more information.
- Episcleritis
- Red eye with injected sclera and conjunctiva.
- May be painless or painful, itching or burning.
- See the CKS topic on Red eye for more information.
- Metabolic bone disease (osteopenia, osteoporosis, and osteomalacia)
- Osteoporosis occurs in up to 30% of men and women with IBD.
- Contributing factors include age, corticosteroid treatment, smoking status, low physical activity, extensive small bowel disease or resection, and nutritional deficiencies.
- Pauci-articular arthritis
- Extra-intestinal manifestations not related to disease activity include:
- Axial arthritis
- This affects the sacroiliac joint (sacroiliitis) or spine (spondylitis), causing buttock and back pain.
- See the CKS topic on Ankylosing spondylitis for more information.
- Polyarticular arthritis
- This affects five or more joints, such as the small joints of the hands.
- It is usually symmetrical and persistent, and it damages the affected joints.
- Pyoderma gangrenosum
- Single or multiple erythematous papules or pustules develop into deep ulcers containing sterile pus unless they are secondarily infected.
- Occurs anywhere, most commonly on the shins, and often at the site of previous trauma.
- Psoriasis
- A systemic, immune-mediated, inflammatory skin disease, which typically has a chronic relapsing-remitting course, and may have nail and joint involvement.
- See the CKS topic on Psoriasis for more information.
- Uveitis (also known as 'iritis' or 'iridocyclitis').
- Hepatobiliary conditions, such as primary sclerosing cholangitis, pericholangitis, steatosis, autoimmune hepatitis, cirrhosis, and gallstones.
- They often present as an incidental finding of abnormal liver function tests, rather than as biliary symptoms. See the CKS topics on Jaundice in adults, Non-alcoholic fatty liver disease (NAFLD), and Gallstones for more information.
- Primary sclerosing cholangitis can progress to cirrhosis and increases the risk of cancers of the bile duct, colon, and rectum.
- Others
- Rare extra-intestinal manifestations of inflammatory bowel disease include bronchiectasis, bronchitis, hyperhomocysteinemia, pancreatitis, renal stones, and venous thromboembolism.
- See the CKS topics on Bronchiectasis, Pancreatitis - chronic, Renal or ureteric colic - acute, and Deep vein thrombosis for more information.
- Axial arthritis
[Gionchetti, 2017; Gomollon, 2017; BMJ Best Practice, 2023; Ranasinghe, 2024]
What is the prognosis?
- Crohn's disease is a lifelong condition, typified by periods of relapse and remission with recurrent cycles of inflammation [BMJ Best Practice, 2023].
- A review of population-based studies of the natural history of Crohn's disease in adults found [Peyrin-Biroulet, 2010]:
- The location of the disease (ileitis, colitis, or ileo-colitis) tended to remain stable over time.
- About 30% of people had an intestinal stricture or fistula at diagnosis.
- About 10% of people had prolonged clinical remission.
- Each year, about 20% of people were admitted to hospital.
- About 50% of people underwent surgery within 10 years of diagnosis.
- About 50% of people undergoing surgery had a recurrence of symptoms within 10 years of diagnosis.
- A European evidence-based consensus paper cites cohort studies that show at least 1 in 3 people with Crohn's disease have a mild to moderate course in the long-term, with little or no requirement for corticosteroid drug treatment [Gomollon, 2017].
- A review of population-based studies of the natural history of Crohn's disease in adults found [Peyrin-Biroulet, 2010]:
- The all-cause mortality rate is higher than in the general population (standardized mortality ratio of 1.38 in cohort studies) [Bewtra, 2013]. The increased risk of mortality is greatest in the 2 years after diagnosis and in those with upper gastrointestinal disease [Mowat, 2011].
- Factors which may suggest a poor prognosis include [Zhao, 2021]:
- Early age of onset.
- Perianal disease.
- Corticosteroid use at presentation.
- Severe symptoms at presentation.
- A history of more than one surgical resection.
- A history of complicated disease, such as abscess, fistulae, or penetrating disease.
Suspected Crohn's disease
When should I suspect Crohn's disease?
The diagnosis of Crohn's disease may be difficult as it has unpredictable relapses and remissions, and clinical features vary with age, onset (insidious or acute), the site(s) of disease, and the presence or absence of complications and extra-intestinal manifestations.
- Suspect Crohn's disease in people with:
- Otherwise unexplained persistent diarrhoea (frequent loose stools for more than 4–6 weeks), including nocturnal diarrhoea.
- In Crohn's colitis, there may be faecal urgency, tenesmus (the desire to defecate while passing little or no stool), and blood or mucus in the stool.
- Abdominal pain or discomfort — this may be due to adhesions, fistulae, intestinal obstruction or dilatation, or mucosal inflammation with active Crohn's disease.
- Non-specific symptoms, such as fatigue, malaise, anorexia, or fever.
- Otherwise unexplained persistent diarrhoea (frequent loose stools for more than 4–6 weeks), including nocturnal diarrhoea.
- On examination there may be:
- Pallor, clubbing, or aphthous mouth ulcers.
- Abdominal tenderness or mass, for example, in the right lower quadrant.
- Perianal pain or tenderness, anal or perianal skin tag, fissure, fistula, or abscess.
- Signs of malnutrition and malabsorption — serial weight loss or, in children, faltering growth or delayed puberty.
- Extra-intestinal manifestations, including abnormalities of the joints, eyes, liver, and skin.
- Suspect a complication of Crohn's disease if there is:
- A history of recurrent urinary tract infections and passing gas or faeces in the urine — may suggest a fistula allowing faecal leakage into the bladder.
- A history of passing gas or faeces through the vagina — may suggest a fistula allowing faecal leakage into the vagina.
- Perianal discharge of mucus or pus — may suggest a fistula allowing faecal leakage through the perianal skin.
- Partial bowel obstruction (abdominal colicky pain and distention, and diarrhoea due to stasis of bowel contents and bacterial overgrowth) or complete bowel obstruction (severe abdominal pain, vomiting, no flatus, and complete constipation) — may suggest intestinal stricture.
- The diagnosis of Crohn's disease (and initiation of treatment) should be done in secondary care. See the section on Management of suspected Crohn's disease for more information.
- If Crohn's disease is suspected, consider arranging the following investigations in primary care, depending on local availability. Be aware that investigation results may be normal in a person with active Crohn's disease.
Basis for recommendation
The recommendations on when to suspect Crohn's disease are based on the European Crohn's and Colitis Organisation (ECCO) publication 3rd European evidence-based consensus on the diagnosis and management of Crohn's disease 2016. Part 1: Diagnosis and medical management [Gomollon, 2017] and Part 2: Surgical management and special situations [Gionchetti, 2017], the British Society of Gastroenterology (BSG) Guidelines for the management of inflammatory bowel disease in adults [Lamb, 2019], the ECCO-ESPGHAN Guideline update The medical management of paediatric Crohn's disease [van Rheenan, 2021], and expert opinion in review articles on Crohn's disease [BMJ Best Practice, 2023; Ranasinghe, 2024] and inflammatory bowel disease in children [Oliveira, 2017; Mitchel, 2024].
- Abdominal pain and weight loss are seen in about 80% and 60% of people with Crohn's disease, respectively, before diagnosis, and blood and/or mucus in the stool may be seen in up to 40–50% of people with Crohn's colitis [Gomollon, 2017].
- The ESPGHAN guideline states that only 25% of children present with the classic triad of diarrhoea, abdominal pain, and weight loss [van Rheenan, 2021].
- Perianal disease may precede or appear simultaneously with intestinal symptoms [Gionchetti, 2017], and extra-intestinal manifestations may be the initial presentation of Crohn's disease [Oliveira, 2017].
How should I investigate a person with suspected Crohn's disease?
- If a diagnosis of Crohn's disease is suspected, consider arranging the following investigations in primary care, depending on local availability:
- Serum full blood count — anaemia may be due to blood loss, malabsorption, or malnutrition. An increased platelet count may suggest active inflammation.
- Serum inflammatory markers such as C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR) — may be raised if there is active inflammation or an infectious complication.
- Serum urea and electrolytes — to assess for electrolyte disturbance and signs of dehydration.
- Serum liver function tests, including albumin — a low serum albumin may indicate protein-losing enteropathy.
- Serum ferritin, vitamin B12, folate, and vitamin D levels — may be nutritional deficiencies due to malabsorption or intestinal losses.
- Coeliac serology — to exclude coeliac disease.
- Stool microscopy and culture, including Clostridioides difficile toxin — to exclude infective gastroenteritis or pseudomembranous colitis. Note: the diagnosis of a pathogen does not exclude a diagnosis of Crohn's disease, as a first episode may be triggered by enteric infection.
- Faecal calprotectin (a faecal white cell marker, for adults) — if raised may suggest active inflammation (compared with a normal result which is expected in irritable bowel syndrome).
- Note that investigation results may be normal in a person with active Crohn's disease.
Basis for recommendation
The recommendations on investigations in primary care are largely based on the National Institute for Health and Care Excellence (NICE) diagnostic guidance Faecal calprotectin diagnostic tests for inflammatory diseases of the bowel [NICE, 2013], the European Crohn's and Colitis Organisation (ECCO) publications 3rd European evidence-based consensus on the diagnosis and management of Crohn's disease 2016. Part 1: Diagnosis and medical management [Gomollon, 2017], European consensus on the diagnosis and management of iron deficiency and anaemia in inflammatory bowel diseases [Dignass, 2015], the European Society of Pediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN) Revised Porto Criteria for the diagnosis of inflammatory bowel disease in children and adolescents [Levine, 2014], the British Society of Gastroenterology (BSG) Guidelines for the management of inflammatory bowel disease in adults [Lamb, 2019], consensus Guidelines of ECCO/ESPGHAN the medical management of paediatric Crohn's disease [van Rheenan, 2021], and expert opinion in review articles on Crohn's disease [BMJ Best Practice, 2023; Mitchel, 2024] and inflammatory bowel disease in children [Oliveira, 2017].
- About two-thirds of people with inflammatory bowel disease have anaemia at diagnosis [Dignass, 2015].
- Faecal calprotectin testing for colonic inflammation may be considered to help distinguish between inflammatory bowel disease and irritable bowel syndrome in adults with recent-onset lower gastrointestinal symptoms for whom specialist assessment is being considered [NICE, 2013]. Faecal calprotectin has a greater than 90% positive predictive value for endoscopically active Crohn's disease [Gomollon, 2017].
- Expert opinion in a review article is that investigation results may be normal in a person with active Crohn's disease [BMJ Best Practice, 2023].
What else might it be?
- Alternative conditions which may present similarly to Crohn's disease include:
- Ulcerative colitis — see the CKS topic on Ulcerative colitis for more information.
- Infective colitis — see the CKS topic on Gastroenteritis for more information.
- Pseudomembranous colitis (Clostridioides difficile infection) — see the CKS topic on Diarrhoea - antibiotic associated for more information.
- Microscopic colitis — this typically presents with chronic watery diarrhoea in older people, and may be associated with the use of drugs, such as lansoprazole, aspirin, sertraline, ranitidine, and simvastatin.
- Intestinal ischaemia — this typically presents with sudden-onset abdominal pain which is disproportionate to clinical findings, with possible signs of an acute abdomen (such as abdominal distension and guarding). Symptoms may be associated with eating. It occurs when colonic perfusion is impaired, for example, by mesenteric artery emboli, arterial or venous thrombosis, or vasculitis.
- Acute appendicitis — acute terminal ileum disease can mimic acute appendicitis. See the CKS topic on Appendicitis for more information.
- Diverticulitis — see the CKS topic on Diverticular disease for more information.
- Coeliac disease — see the CKS topic on Coeliac disease for more information.
- Irritable bowel syndrome — see the CKS topic on Irritable bowel syndrome for more information.
- Anal fissure — see the CKS topic on Anal fissure for more information.
- Malignancy (such as colorectal cancer, small bowel cancer, and lymphoma) — see the CKS topic on Gastrointestinal tract (lower) cancers - recognition and referral for more information.
- Endometriosis — see the CKS topic on Endometriosis for more information.
- Laxative misuse.
Basis for recommendation
This information is based on the European Crohn's and Colitis Organisation (ECCO) publication 3rd European evidence-based consensus on the diagnosis and management of Crohn's disease 2016. Part 1: Diagnosis and medical management [Gomollon, 2017], and expert opinion in a review article on Crohn's disease [BMJ Best Practice, 2023].
Management
Scenario: Suspected Crohn's disease
From age 6 months onwards.
Management of suspected Crohn's disease
- If Crohn's disease is suspected:
- Arrange emergency hospital admission if the person is systemically unwell with symptoms of bloody diarrhoea, fever, tachycardia, or hypotension.
- If hospital admission is not indicated, arrange an urgent referral to secondary care (paediatric gastroenterologist for children or gastroenterologist for adults) for confirmation of the diagnosis and initiation of specialist drug treatments.
- Do not prescribe anti-diarrhoeal drugs if the clinical diagnosis is uncertain, as they may precipitate toxic megacolon in people with ulcerative colitis.
- If there are suspected extra-intestinal manifestations that cannot be managed in primary care, arrange referral to an appropriate specialist (such as rheumatology, dermatology, or ophthalmology).
- Following confirmation of the diagnosis in secondary care, arrange to review the person regularly in primary care.
- The frequency of the review will depend on clinical judgement and the frequency of specialist gastroenterology follow up.
Specialist investigations
Specialist investigations to confirm the diagnosis of Crohn's disease may include:
- Colonoscopy with histology of multiple intestinal biopsy specimens, which allows classification of disease extent and severity. Findings may include discontinuous colonic or ileal inflammation or ulceration, a 'cobblestone' appearance, and rectal sparing.
- Upper intestinal endoscopy for children and young people, and if there are upper gastrointestinal tract symptoms in adults.
- Magnetic resonance imaging (MRI) of the small bowel, small bowel ultrasound, or small bowel capsule endoscopy, for example, in people where endoscopy and conventional imaging have been non-diagnostic.
- Pelvic MRI to evaluate suspected perianal disease, to allow definition of the extent and location of abscesses and fistulae.
- Computed tomography (CT) to stage Crohn's disease and look for extraluminal complications, such as abscesses and fistulae.
- Abdominal ultrasound to assess bowel thickness and dilatation (suggesting obstruction), abscesses, fistulae, and strictures.
- Plain abdominal X-rays to identify small bowel or colonic dilatation, which may indicate obstruction.
[Gomollon, 2017; Oliveira, 2017; BMJ Best Practice, 2023; Ranasinghe, 2024]
Basis for recommendation
The recommendations on the management of suspected Crohn's disease are based largely on the European Crohn's and Colitis Organisation (ECCO) publications Consensus guidelines of ECCO/ESPGHAN on the medical management of paediatric Crohn's disease [van Rheenan, 2021] and The first European evidence-based consensus on extra-intestinal manifestations in inflammatory bowel disease [Harbord, 2016], the British Society of Gastroenterology (BSG) Guidelines for the management of inflammatory bowel disease in adults [Lamb, 2019], the National Institute for Health and Care Excellence (NICE) quality standards for inflammatory bowel disease [NICE, 2020], and expert opinion in review articles on Crohn's disease [BMJ Best Practice, 2023; Ranasinghe, 2024].
- Urgent referral is indicated if Crohn's disease is suspected, as early specialist treatment with immunosuppressive or biologic therapy improves rates of mucosal healing and clinical remission [van Rheenan, 2021]. This is in line with the NICE quality standards on inflammatory bowel disease, which recommend specialist assessment within four weeks of referral [NICE, 2020].
- The recommendation on arranging referral for suspected extra-intestinal manifestations is extrapolated from the BSG clinical guideline [Lamb, 2019], and is pragmatic, based on what CKS considers to be good clinical practice.
- The information on the specialist investigations is taken from the British Society of Paediatric Gastroenterology, Hepatology and Nutrition Guidelines for the management of inflammatory bowel disease in children in the United Kingdom [van Rheenan, 2021], the BSG guideline [Lamb, 2019], the 3rd European evidence-based consensus on the diagnosis and management of Crohn's disease 2016. Part 1: diagnosis and medical management [Gomollon, 2017], and review articles on Crohn's disease [Oliveira, 2017; BMJ Best Practice, 2023; Ranasinghe, 2024].
Scenario: Confirmed Crohn's disease
From age 6 months onwards.
How should I review a person with confirmed Crohn's disease in primary care?
- Assess the impact of symptoms on daily functioning, such as home, work, school, and leisure activities, and assess for associated anxiety and/or depression. See the CKS topics on Generalized anxiety disorder, Depression in children, and Depression for more information.
- Provide advice on Crohn's disease and offer sources of information and support:
- Explain that Crohn's disease is a lifelong condition, which may have unpredictable relapses and remissions, specialist drug treatments aim to induce remission of the disease and to treat symptoms, and occasionally surgical treatments may be necessary.
- Crohn's and Colitis UK is a national charity that provides support for people with Crohn's disease and their families (website and live chat available at www.crohnsandcolitis.org.uk; telephone information service 0300 2225700). It publishes a range of information sheets and booklets including Crohn's disease and IBD in children: a parent's guide, and provides information on managing symptoms, drug treatments, diet, pregnancy, education, employment, and travel.
- Emotional support is available through the Samaritans helpline (116123 - 24 hrs a day, 7 days a week).
- CICRA (Crohn's in Childhood Research Association) is a national charity that supports children and young people with inflammatory bowel disease (website available at www.cicra.org), which provides patient information and young people's forums for peer support.
- Encourage the person to stop smoking, if needed and appropriate, as this may reduce the risk of relapse. See the CKS topic on Smoking cessation for more information.
- The Crohn's and Colitis UK patient information sheet Smoking and IBD has some useful information.
- Assess the person's risk of osteoporosis, including dietary calcium intake, the extent of Crohn's disease, and history of small bowel resection, and manage appropriately. See the CKS topic on Osteoporosis - prevention of fragility fractures for more information.
- The Crohn's and Colitis UK patient information sheet Bones and IBD has some useful information.
- Ensure that the person has follow-up arranged with a gastroenterology specialist, if needed, and encourage the person to attend appointments regularly.
- Ensure the person is aware of the need for colorectal cancer surveillance and has colonoscopy screening arranged by the specialist team if symptoms started 10 years ago and there is Crohn's colitis affecting more than one segment of colon. The frequency of subsequent monitoring is a specialist decision, depending on the severity and duration of colitis, presence of co-morbid conditions, and the appearances at colonoscopy.
- The Crohn's and Colitis UK patient information sheet Bowel cancer and IBD has some useful information.
- If a shared-care agreement is in place, prescribe and monitor specialist drug treatments, if appropriate, and encourage the person to take their medication regularly as prescribed.
- Monitoring may include checking serum ferritin, vitamin B12, folate, calcium, and vitamin D levels, and arranging supplementation where appropriate. See the CKS topics on Anaemia - iron deficiency, Anaemia - B12 and folate deficiency, Vitamin D deficiency in adults - treatment and prevention, and Vitamin D deficiency in children for more information.
- Note that specialist drug treatments for the induction and maintenance of remission in Crohn's disease should always be initiated by a specialist. If there are any uncertainties regarding adverse effects or safety of drug treatments, seek specialist advice.
- Assess for clinical features suggesting a Crohn's disease flare-up or other troublesome symptoms, and manage appropriately. Consider checking:
- The person's body mass index (BMI), and for unintended weight loss or signs of malnutrition.
- The serum C-reactive protein (CRP) level if a flare-up is suspected, as an increased level may indicate a severe relapse requiring hospital admission. See the section on How should I manage a person with a Crohn's disease flare-up? for more information.
- Arrange a referral to an appropriate specialist (such as rheumatology, dermatology, or ophthalmology) if appropriate, if there are suspected extra-intestinal manifestations.
- If the person is taking immunosuppressive or biologic therapy, ensure they are aware that:
- Live vaccines are contraindicated, and these vaccines should only be given before the start of specialist treatment, or else postponed for at least 6 months after stopping this therapy.
- They are at increased risk of influenza and pneumococcal infection and should receive appropriate vaccinations regularly. See the CKS topics on Immunizations - seasonal influenza and Immunizations - pneumococcal for more information.
Specialist treatments
- Specialist drug treatments for Crohn's disease are generally given for induction of remission and maintenance of remission.
- Options include:
- Corticosteroids — monotherapy with corticosteroids (such as prednisolone) may be used for induction of remission, with the aim to gradually taper the dose according to disease severity and the person's response to treatment. Corticosteroids should not be used to maintain clinical remission.
- Immunosuppressive drugs — the thiopurines (azathioprine, mercaptopurine) or methotrexate (second-line) may be added to corticosteroid therapy to induce remission if there are two or more inflammatory exacerbations in a 12-month period, or if the corticosteroid dose cannot be tapered as planned. These drugs are also effective at maintaining remission. Thiopurines may increase the person's risk of non-melanoma skin cancer, and people should be monitored for skin cancer and given appropriate sun protection advice.
- Biologic therapy — the anti-tumour necrosis factor alpha monoclonal antibody agents infliximab and adalimumab are effective at inducing remission in people with severe active disease which has not responded to conventional therapy, or where conventional therapy is not tolerated; for treating perianal disease; and for maintaining remission.
- Aminosalicylates — mesalazine and sulfasalazine may be considered for a first presentation or a single inflammatory exacerbation in a 12-month period, if corticosteroids are contraindicated or not tolerated.
- See the CKS topics on Corticosteroids - oral and DMARDs for detailed prescribing information on these groups of drugs.
- Options include:
- Specialist enteral nutritional supplementation may be used as an alternative to conventional corticosteroid drug treatment for induction of remission in children and young people who have faltering growth or development, or if there are concerns about adverse effects of corticosteroids.
- Note that evidence does not support the use of enteral nutrition for the maintenance of remission in adults.
- To maintain remission in people with ileocolonic Crohn's disease who have had a complete macroscopic resection within the last 3 months, the National Institute for Health and Care Excellence (NICE) recommends that azathioprine in combination with up to 3 months postoperative metronidazole should be considered. Monotherapy with azathioprine should be considered for people who cannot tolerate metronidazole [NICE, 2019]. Biologics should not be used to maintain clinical remission after complete macroscopic resection of ileocolonic Crohn's disease [NICE, 2019].
Basis for recommendation
The recommendations on review in primary care are based on expert opinion in the National Institute for Health and Care Excellence (NICE) clinical guidelines Colonoscopic surveillance for prevention of colorectal cancer in people with ulcerative colitis, Crohn's disease or adenomas [NICE, 2022], Crohn's disease: management [NICE, 2019], the European Crohn's and Colitis Organisation (ECCO) publications 3rd European evidence-based consensus on the diagnosis and management of Crohn's disease 2016. Part 1: Diagnosis and medical management [Gomollon, 2017], European consensus on the diagnosis and management of iron deficiency and anaemia in inflammatory bowel diseases [Dignass, 2015], and The first European evidence-based consensus on extra-intestinal manifestations in inflammatory bowel disease [Harbord, 2016], the European Society for Clinical Nutrition and Metabolism (ESPEN) guideline Clinical nutrition in inflammatory bowel disease [Bischoff, 2023], the British Society of Gastroenterology (BSG) Guidelines for the management of inflammatory bowel disease in adults [Lamb, 2019], the European Society of Paediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN) consensus document Guidelines for the management of paediatric Crohn's disease [van Rheenan, 2021], and expert opinion in review articles on Crohn's disease [BMJ Best Practice, 2023; Ranasinghe, 2024] and inflammatory bowel disease in children [Mitchel, 2024].
Assessing the impact of symptoms
- This recommendation is based on the fact that inflammatory bowel disease can affect psychosocial functioning [Oliveira, 2017], and the incidence of anxiety and depression is higher in people with inflammatory bowel disease than in control populations [Barberio, 2021; Lamb, 2019].
Offering sources of information and support
- This recommendation is based on the NICE clinical guideline on Crohn's disease [NICE, 2019] and the BSG clinical guideline [Lamb, 2019].
Advice on smoking cessation
- The recommendation on smoking cessation is based on the NICE clinical guideline on Crohn's disease [NICE, 2019], the ECCO consensus paper on diagnosis and management of Crohn's disease [Gomollon, 2017], and expert opinion in a review article [BMJ Best Practice, 2023].
- The ECCO consensus paper cites observational studies that show smoking increases the need for corticosteroid and immunosuppressive drug treatment, as well as surgical treatment of Crohn's disease [Gomollon, 2017].
- In addition, expert opinion in a review article states that smoking cessation can be as effective as immunosuppressive therapy and can reduce the risk of relapse by 65% compared with continued smoking [BMJ Best Practice, 2023].
Assessing osteoporosis risk
- This recommendation is based on expert opinion which states that people with Crohn's disease are at increased risk of osteoporosis, due to factors such as potential intermittent corticosteroid use and reduced micronutrient intake and absorption, for example, if there is small bowel disease [Gomollon, 2017; BMJ Best Practice, 2023].
- The ECCO consensus paper on extra-intestinal manifestations of inflammatory bowel disease cites a large study which found tight control of disease activity and supplementation of calcium and vitamin D were associated with a median annual increase in bone mineral density of 0.76% over 4 years [Harbord, 2016].
- The ESPGHAN guideline recommends ensuring an adequate intake of calcium and vitamin D, and considering supplementation if this is insufficient [van Rheenan, 2021].
Ensuring specialist follow-up and surveillance
- The recommendations on colonoscopic surveillance for preventing colorectal cancer are based on the NICE guideline on colonoscopic surveillance for people with Crohn's disease [NICE, 2022] and ECCO evidence based consensus on Inflammatory bowel disease and malignancies [Gordon, 2023].
Prescribing and monitoring drug treatments
- This recommendation is based on the ECCO consensus paper on iron deficiency and anaemia [Dignass, 2015], the ESPEN guideline on nutrition [Bischoff, 2023], and expert opinion in review articles [BMJ Best Practice, 2023; Ranasinghe, 2024].
- Recurrent anaemia may indicate persistent disease activity even if there is clinical remission and serum inflammatory markers are normal [Dignass, 2015].
- People with inflammatory bowel disease are at increased risk of malnutrition, and should be checked for nutritional deficiencies regularly [Bischoff, 2023].
Assessing for clinical features of a relapse
- The recommendation on checking the person's body mass index (BMI) is extrapolated from the ESPEN guideline on nutrition, which states that as people with inflammatory bowel disease are at increased risk of malnutrition, they should be screened for this on a regular basis [Bischoff, 2023].
- People with malnutrition are more likely to be hospitalized, are at increased risk of infection and venous thromboembolism, and have increased mortality rates compared with people who are not malnourished.
- In addition, malnourished children are at increased risk of growth failure and delayed pubertal development.
Arranging referral for suspected extra-intestinal manifestations
- This recommendation is extrapolated from the BSG clinical guideline [Lamb, 2019], and is pragmatic, based on what CKS considers to be good clinical practice.
Advice on live vaccines
- These recommendations are based on the BSG clinical guideline [Lamb, 2019] and expert opinion in review articles [BMJ Best Practice, 2023; Ranasinghe, 2024].
- People with Crohn's disease may be at increased risk of opportunistic infections due to underlying disease activity, malnutrition, long-term immunosuppressive drug treatment, or surgery [Lamb, 2019].
How should I manage a person with a Crohn's disease flare-up?
- Arrange an emergency hospital admission if the person has a suspected flare-up of Crohn's disease and is systemically unwell with severe symptoms, such as:
- Severe diarrhoea (more than 6–8 stools a day).
- Fever, dehydration, tachycardia, or hypotension.
- Suspected intestinal obstruction or intra-abdominal or perianal abscess.
- Cachexia with body mass index (BMI) less than 18.5 kg/m2, or unintended sudden weight loss.
- Persistent symptoms despite optimal management in primary care.
- Note that a raised serum C-reactive protein (CRP) level may be suggestive of a severe disease flare-up.
- If admission to hospital is not indicated:
- Consider whether symptoms may be due to an alternative diagnosis, and manage appropriately.
- Check the person's adherence to their current drug treatment regimen, and encourage them to take medication regularly and appropriately.
- Consider arranging an urgent specialist gastroenterology review appointment or seeking specialist advice.
- Consider prescribing drug treatment for disease flare-ups according to the person's shared-care agreement, such as starting a tapered course of oral corticosteroids, if appropriate, whilst awaiting specialist review. Note: corticosteroids should not be started in people taking dual immunosuppressive or biologic therapy, and corticosteroids should not be used to maintain disease remission.
- Consider arranging a referral to a dietitian if there are signs of unintended weight loss or malnutrition.
- If there are recurrent flares of disease activity, seek specialist advice regarding whether the person's maintenance treatment regimen needs to be changed or whether surgery may be needed.
Basis for recommendation
The recommendations on the management of a suspected relapse of Crohn's disease are based on the European Crohn's and Colitis Organisation (ECCO) publications 3rd European evidence-based consensus on the diagnosis and management of Crohn's disease 2016. Part 1: Diagnosis and medical management [Gomollon, 2017] and Practical guideline for fatigue management in inflammatory bowel disease [Kreijne, 2016], the European Society for Clinical Nutrition and Metabolism (ESPEN) guideline Clinical nutrition in inflammatory bowel disease [Bischoff, 2023], the British Society of Gastroenterology (BSG) Guidelines for the management of inflammatory bowel disease in adults [Lamb, 2019], and expert opinion in review articles on Crohn's disease [BMJ Best Practice, 2023; Ranasinghe, 2024].
Arranging urgent hospital admission
- The body mass index (BMI) parameter is based on the ESPEN guideline on nutrition which states that this value reflects undernutrition and disease-associated catabolism [Bischoff, 2023].
- The ECCO consensus paper on the diagnosis and management of Crohn's disease states that objective evidence of disease activity should be obtained (for example, using inflammatory markers) before diagnosing a flare-up of active Crohn's disease [Gomollon, 2017].
Management if admission is not indicated
- The recommendation on arranging an urgent gastroenterology review appointment or seeking specialist advice is based on the BSG clinical guideline, which states that people experiencing a possible relapse of their inflammatory bowel disease should have access to specialist review within five working days [Lamb, 2019]. This is supported by expert opinion in a review article which states that an expedited review appointment should be arranged in the event of a relapse of Crohn's disease [BMJ Best Practice, 2023].
- The information on considering starting oral corticosteroids in primary care is based on expert opinion in a review article [BMJ Best Practice, 2023].
- The recommendation on considering referral to a dietitian is extrapolated from the ESPEN guideline, which states that nutritional care is important, particularly in children, to promote optimal growth and pubertal development [Bischoff, 2023].
- The ECCO consensus paper on the diagnosis and management of Crohn's disease states that surgery may be considered for people with severely active localized ileocaecal Crohn's disease which is refractory to conventional medical treatment [Gomollon, 2017].
How should I manage symptoms in people with Crohn's disease?
If there are troublesome symptoms associated with Crohn's disease, ensure that the person's maintenance treatment is optimal and seek specialist advice if necessary. The following management strategies may be appropriate in primary care or according to the person's shared-care agreement (if available).
- Diarrhoea
- Exclude any alternative cause for diarrhoea symptoms, such as infection, abscess formation, dysmotility, bacterial overgrowth, bile salt malabsorption, or drugs, and manage appropriately.
- Suspect a diagnosis of bile salt malabsorption if there is watery diarrhoea accompanied by abdominal bloating and steatorrhoea (suggested by pale, floating stool), particularly if the person has extensive ileal disease or a history of distal ileal resection.
- Diarrhoea may be secondary to drug treatment, such as laxatives, iron supplements, azathioprine, mercaptopurine, or methotrexate. Seek specialist advice regarding reducing or stopping medication, if necessary.
- If diarrhoea symptoms persist, consider whether symptomatic treatment is appropriate, following specialist advice if necessary. Options include:
- Anti-motility drugs which slow colonic transit (for example loperamide). See the CKS topic on Irritable bowel syndrome for more information.
- Anti-spasmodic drugs for pain relief (for example mebeverine). See the CKS topic on Irritable bowel syndrome for more information.
- Bulk-forming laxatives (for example ispaghula husk). See the CKS topics on Constipation and Constipation in children for more information.
- A bile acid sequestrant (such as colestyramine) to bind bile salts, if a specialist diagnosis of bile acid malabsorption has been made and drug treatment has been previously prescribed by a specialist. If this is a new presentation or a bile acid sequestrant has not previously been prescribed, seek specialist advice.
- Note: do not prescribe symptomatic treatment for people who are systemically unwell, have abdominal tenderness or signs of intestinal obstruction.
- Offer sources of information to help manage symptoms, such as the Crohn's and Colitis UK patient information sheets Diarrhoea, constipation, Managing bowel incontinence in IBD, and Managing bloating and wind.
- Exclude any alternative cause for diarrhoea symptoms, such as infection, abscess formation, dysmotility, bacterial overgrowth, bile salt malabsorption, or drugs, and manage appropriately.
- Fistulae and strictures
- If a fistula or intestinal stricture is suspected:
- Arrange hospital admission, arrange a referral to colorectal surgery, or seek specialist advice, depending on clinical judgement. Specialist treatment depends on the location, scale, and nature of symptoms.
- Asymptomatic simple perianal fistulae may not need any specific treatment.
- Specialist drug treatment of a fistula may be with long-term antibiotics (such as metronidazole or ciprofloxacin) to control infection.
- Fistulae and strictures may be treated with immunosuppressive drugs to control inflammation.
- Surgery may be indicated for intra-abdominal abscesses, complicated perianal or internal fistulae that fail to respond to optimal medical treatment, strictures with symptoms of partial or complete bowel obstruction, or in cases of severe infection.
- An endoscopic procedure or surgery may be needed to dilate or excise an intestinal stricture.
- Offer sources of information, such as the Crohn's and Colitis UK patient information sheets Living with a fistula and Surgery for Crohn's disease.
- If a fistula or intestinal stricture is suspected:
- Upper gastrointestinal symptoms
- If the person has previously been investigated for upper gastrointestinal symptoms, manage the underlying cause appropriately. See the CKS topics on Dyspepsia - proven GORD , Dyspepsia - proven peptic ulcer, Dyspepsia - proven functional, and Dyspepsia - pregnancy-associated for more information.
- Assess for any alarm symptoms that may suggest serious underlying pathology, and manage appropriately. See the CKS topic on Gastrointestinal tract (upper) cancers - recognition and referral for more information.
- For other people, consider whether Crohn's disease may be affecting the stomach or duodenum, and manage appropriately. See the CKS topic on Dyspepsia - unidentified cause for more information.
- Consider checking serum full blood count and C-reactive protein (CRP) to assess for anaemia and disease activity.
- Abdominal or perianal pain
- Identify the underlying cause for abdominal or perianal pain, wherever possible, to allow appropriate management.
- Persistent severe pain may indicate poor disease control or complications, such as pending perforation.
- If a person has Crohn's disease with suspected perianal sepsis or fistula, arrange urgent hospital admission for examination under anaesthesia to consider whether surgical drainage is needed.
- Offer analgesia to help relieve symptoms.
- Consider paracetamol first-line. Opiates may be needed for additional symptom relief. See the CKS topic on Analgesia - mild-to-moderate pain for more information.
- Advise the person to avoid nonsteroidal anti-inflammatory drugs (NSAIDs) wherever possible, as they may aggravate Crohn's disease.
- If pain is not effectively controlled with optimal analgesia in primary care, consider arranging referral to a chronic pain service, for specialist management.
- Identify the underlying cause for abdominal or perianal pain, wherever possible, to allow appropriate management.
- Fatigue
- Exclude any alternative or contributing cause for persistent fatigue (such as pain, anaemia, reduced nutritional intake and activity levels, sleep disturbance, stress, anxiety, or depression), and manage appropriately. See the CKS topics on Tiredness/fatigue in adults, Insomnia, Generalized anxiety disorder, Depression, and Depression in children for more information.
- Consider checking serum full blood count, ferritin, vitamin B12 and folate levels, as people with Crohn's disease can develop iron deficiency anaemia due to blood loss or decreased absorption; anaemia of chronic disease; anaemia secondary to nutritional deficiencies; or drug-induced anaemia secondary to mercaptopurine, azathioprine, or sulfasalazine, for example. See the CKS topics on Anaemia - iron deficiency and Anaemia - B12 and folate deficiency for more information.
- Be aware that the optimal management of anaemia of chronic disease involves induction of remission of Crohn's disease.
- Offer sources of information, such as the Crohn's and Colitis UK patient information sheet Fatigue and IBD.
- Exclude any alternative or contributing cause for persistent fatigue (such as pain, anaemia, reduced nutritional intake and activity levels, sleep disturbance, stress, anxiety, or depression), and manage appropriately. See the CKS topics on Tiredness/fatigue in adults, Insomnia, Generalized anxiety disorder, Depression, and Depression in children for more information.
- Oral problems
- If the person develops suspected oral lesions secondary to Crohn's disease (such as mucosal tags, 'cobblestoning' [close-packed mucosal nodules], aphthous ulcers, or angular cheilitis), arrange a gastroenterology clinic review appointment and/or referral to a specialist in oral medicine, depending on clinical judgement.
- Specialist treatments may include topical or intra-lesional corticosteroids, topical or systemic immunosuppressives or biologic agents, and enteral nutritional support.
- See the CKS topic on Aphthous ulcer for more information.
- If the person develops suspected oral lesions secondary to Crohn's disease (such as mucosal tags, 'cobblestoning' [close-packed mucosal nodules], aphthous ulcers, or angular cheilitis), arrange a gastroenterology clinic review appointment and/or referral to a specialist in oral medicine, depending on clinical judgement.
Basis for recommendation
The recommendations on the management of troublesome symptoms are based on the National Institute for Health and Care Excellence (NICE) clinical guideline Crohn's disease: management [NICE, 2019], the European Crohn's and Colitis Organisation (ECCO) publications 3rd European evidence-based consensus on the diagnosis and management of Crohn's disease 2016. Part 1: Diagnosis and medical management [Gomollon, 2017], Part 2: Surgical management and special situations [Gionchetti, 2017], European consensus on the diagnosis and management of iron deficiency and anaemia in inflammatory bowel diseases [Dignass, 2015], and Practical guideline for fatigue management in inflammatory bowel disease [Kreijne, 2016], the British Society of Gastroenterology (BSG) Guidelines for the management of inflammatory bowel disease in adults [Lamb, 2019], the European Society of Paediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN) consensus document Guidelines for the medical management of paediatric Crohn's disease [van Rheenan, 2021], the European Society for Clinical Nutrition and Metabolism (ESPEN) guideline Clinical nutrition in inflammatory bowel disease [Bischoff, 2023], and expert opinion in a review article on Crohn's disease [BMJ Best Practice, 2023] and on Crohn's disease in children [Mitchel, 2024].
Management of diarrhoea
- These recommendations are based on the ECCO consensus paper on the diagnosis and management of Crohn's disease [Gomollon, 2017], the BSG clinical guideline [Lamb, 2019], the ESPEN guideline on nutrition [Bischoff, 2023], and are pragmatic, based on what CKS considers to be good clinical practice.
Management of fistulae and strictures
These recommendations are based on the NICE clinical guideline [NICE, 2019], the BSG clinical guideline [Lamb, 2019], the ESPGHAN guideline [van Rheenan, 2021], and the ESPEN guideline on nutrition [Bischoff, 2023].
Management of upper gastrointestinal symptoms
These recommendations are based on the BSG clinical guideline [Lamb, 2019].
Management of abdominal and perianal pain
- The information that severe pain may indicate poor disease control is based on the ESPGHAN guideline [van Rheenan, 2021].
- The recommendations on the use of opiate analgesia are based on the expert opinion of previous external reviewers of this CKS topic.
- The recommendation to avoid nonsteroidal anti-inflammatory drug (NSAID) use is extrapolated from the BSG clinical guideline [Lamb, 2019]and expert opinion in a review article [BMJ Best Practice, 2023], as NSAIDs may exacerbate Crohn's disease.
- The recommendation on urgent referral for examination under anaesthesia (EUA) is based the ECCO consensus paper on surgical management, which states that this is gold standard initial management of perianal fistula disease [Gionchetti, 2017] and the BSG clinical guideline [Lamb, 2019].
Management of fatigue
These recommendations are based on the ECCO consensus papers on iron deficiency and anaemia [Dignass, 2015] and fatigue management [Kreijne, 2016], the BSG clinical guideline [Lamb, 2019], and the expert opinion of previous external reviewers of this CKS topic.
Management of oral problems
These recommendations are based on the ESPGHAN guideline [van Rheenan, 2021] and the BSG clinical guideline [Lamb, 2019].
Scenario: Fertility, pregnancy, and breastfeeding with Crohn's disease
From age 13 years onwards (Female).
What should I advise a person with Crohn's disease about fertility issues?
- Contraception advice
- For women with Crohn's disease, the choice of contraceptive method may be influenced by factors such as malabsorption, surgical history, prolonged immobility, extra-intestinal manifestations (such as primary sclerosing cholangitis), and associated conditions (such as osteoporosis and venous thromboembolism).
- See the CKS topic on Contraception - assessment for detailed information on contraception options for women with different co-morbidities.
- The College of Sexual and Reproductive Healthcare (CoSRH) UK Medical Eligibility Criteria for contraceptive use has detailed information on prescribing contraception for women with inflammatory bowel disease (IBD).
- Note that:
- The efficacy of oral contraception may be reduced in women with malabsorption, small bowel disease, or a history of small bowel resection. Oral methods are unaffected by colectomy and ileostomy.
- Effective contraception should be prescribed during treatment and for at least 3 months after treatment with methotrexate (in men and women), for at least 6 months after stopping infliximab, and for at least 5 months after stopping adalimumab.
- Offer sources of support and information, such as the Crohn's and Colitis UK patient information leaflet Sexual relationships and IBD.
- For women with Crohn's disease, the choice of contraceptive method may be influenced by factors such as malabsorption, surgical history, prolonged immobility, extra-intestinal manifestations (such as primary sclerosing cholangitis), and associated conditions (such as osteoporosis and venous thromboembolism).
- Fertility advice
- Advise women with Crohn's disease that:
- Active disease may reduce fertility rates, and inactive disease should not affect fertility.
- Women who have abdominal or pelvic sepsis, surgery or adhesions may be at increased risk of impaired tubal function.
- Drug treatment with methotrexate may affect oogenesis and fertility.
- See the CKS topic on Infertility for more information.
- Advise men with Crohn's disease that:
- Fertility is unlikely to be affected for most men with Crohn's disease, but pelvic surgery may lead to erectile dysfunction or ejaculatory problems. See the CKS topic on Erectile dysfunction for more information.
- Drug treatment with sulfasalazine or methotrexate may affect spermatogenesis, however, the effect should be reversible on stopping treatment. Infliximab may affect semen quality by reducing motility in some men.
- Offer sources of support and information, such as the Crohn's and Colitis UK patient information leaflet Reproductive health and IBD.
- Advise women with Crohn's disease that:
- Pre-pregnancy planning
- Refer women and men to a gastroenterologist for pre-pregnancy counselling before trying to conceive, if they are planning a pregnancy. See the CKS topic on Pre-conception - advice and management for more information.
- For women, specialist drug treatment may need to be changed as some medications are teratogenic. Crohn's disease management should be optimized by the specialist, to ensure that the disease is well controlled and the person is in remission before trying to conceive. This reduces the risk of persistent disease activity and relapse during pregnancy.
- For men, drug treatments that affect spermatogenesis may need to be changed to a different drug or temporarily stopped, following specialist assessment.
- Refer women and men to a gastroenterologist for pre-pregnancy counselling before trying to conceive, if they are planning a pregnancy. See the CKS topic on Pre-conception - advice and management for more information.
Basis for recommendation
The recommendations on contraception, fertility, and pre-conception planning are based on the European Crohn's and Colitis Organisation (ECCO) publications 3rd European evidence-based consensus on the diagnosis and management of Crohn's disease 2016. Part 1: diagnosis and medical management [Gomollon, 2017] and The second European evidence-based consensus on reproduction and pregnancy in inflammatory bowel disease [van der Woude, 2015], the College of Sexual and Reproductive Healthcare (CoSRH) guideline Sexual and reproductive health for individuals with inflammatory bowel disease [CoSRH, 2016], the British Society of Gastroenterology (BSG) Guidelines on the management of inflammatory bowel disease in adults [Lamb, 2019], and expert opinion in review articles on Crohn's disease [BMJ Best Practice, 2023; Ranasinghe, 2024] and the British National Formulary (BNF) [BNF, 2024].
- The recommendations on the requirements for effective contraception when taking specialist drug treatments are based on the CoSRH guideline [CoSRH, 2016] and the BNF [BNF, 2024].
- The risk of disease flare-ups is similar between pregnant and non-pregnant women, however, disease activity at conception influences the disease course during pregnancy [BMJ Best Practice, 2023].
- Optimum disease control is needed prior to conception and during pregnancy, as active Crohn's disease may be associated with adverse pregnancy outcomes, such as preterm labour and low birthweight [van der Woude, 2015; Lamb, 2019].
- The rate of women choosing not to have children is higher among women with Crohn's disease than the general population [CoSRH, 2016]. This may be secondary to concerns about the risk of adverse pregnancy outcomes, possible teratogenicity of drug treatments, and the heritability of the disease. Pre-pregnancy counselling may provide an opportunity for women to identify and discuss these issues.
What advice should I give a pregnant or breastfeeding woman with Crohn's disease?
Advise women and men they need to be referred to a gastroenterologist before trying to conceive if they are planning a pregnancy. See the CKS topic on Pre-conception - advice and management for more information.
- Pregnancy advice
- If a woman has a planned pregnancy, ensure she is managed jointly by a gastroenterologist and obstetrician with appropriate expertise.
- If a woman has an unplanned pregnancy and is prescribed:
- Methotrexate, infliximab, or adalimumab, seek immediate specialist advice from a gastroenterologist and/or a specialist in fetal medicine about stopping and changing treatment and starting folic acid supplementation.
- Other medication, advise the woman to continue maintenance drug treatment, start folic acid supplementation, and arrange an urgent specialist gastroenterology review appointment to ensure that management of Crohn's disease is optimized.
- If a woman has had significant pelvic surgery, extensive perianal disease, or active rectal involvement, she may be offered elective caesarean section to reduce the risk of potential anal sphincter damage.
- Offer sources of support and information, such as the Crohn's and Colitis UK patient information leaflet Pregnancy and IBD.
- Breastfeeding advice
- If a woman with Crohn's disease wishes to breastfeed, seek specialist gastroenterology advice if there is any uncertainty about the safety of breastfeeding while prescribed specialist medication.
- Some drug treatments such as methotrexate, adalimumab, loperamide, ciprofloxacin, and high-dose metronidazole may need to be stopped while breastfeeding, and alternative medication started by a specialist if needed.
- If a woman experiences problems breastfeeding, see the CKS topics on Breastfeeding problems and Mastitis and breast abscess for more information.
- If a woman with Crohn's disease wishes to breastfeed, seek specialist gastroenterology advice if there is any uncertainty about the safety of breastfeeding while prescribed specialist medication.
Basis for recommendation
The recommendations on pregnancy and breastfeeding are based on the European Crohn's and Colitis Organisation (ECCO) publication The second European evidence-based consensus on reproduction and pregnancy in inflammatory bowel disease [van der Woude, 2015], the College of Sexual and Reproductive Healthcare (CoSRH) guideline Sexual and reproductive health for individuals with inflammatory bowel disease [CoSRH, 2016], the British Society of Gastroenterology (BSG) Guidelines on the management of inflammatory bowel disease in adults [Lamb, 2019], and expert opinion in a review article on Crohn's disease [BMJ Best Practice, 2023] and in the British National Formulary [BNF, 2024].
Pregnancy advice
- Adverse pregnancy outcomes are associated with active Crohn's disease, and disease flare-ups should be treated aggressively in pregnancy to reduce the risk of fetal and maternal complications. The benefits of clinical remission in pregnancy generally outweigh the risks to the fetus from specialist medication [CoSRH, 2016; BMJ Best Practice, 2023].
- The recommendation to ensure that women who are pregnant are managed jointly by a gastroenterologist and obstetrician is based on the CoSRH guideline [CoSRH, 2016] and the BSG clinical guideline [Lamb, 2019].
- The information to seek immediate specialist advice if the woman is taking medication such as methotrexate is extrapolated from the fact that it is potentially teratogenic [CoSRH, 2016; BNF, 2024].
- The information on women being offered possible Caesarean section in certain clinical situations is based on the CoSRH guideline [CoSRH, 2016] and the BSG clinical guideline [Lamb, 2019].
Breastfeeding advice
The recommendations on breastfeeding are based on the CoSRH guideline [CoSRH, 2016] and expert opinion in the BNF, as methotrexate is present in breast milk [BNF, 2024].
Supporting evidence
This CKS topic is largely based on expert opinion in the National Institute for Health and Care Excellence (NICE) clinical guidelines Colonoscopic surveillance for prevention of colorectal cancer in people with ulcerative colitis, Crohn's disease or adenomas [NICE, 2022], ECCO European evidence-based consensus; inflammatory bowel disease and malignancies [Gordon, 2023], and Crohn's disease: management [NICE, 2019], the European Crohn's and Colitis Organisation (ECCO) publications 3rd European evidence-based consensus on the diagnosis and management of Crohn's disease 2016. Part 1: Diagnosis and medical management [Gomollon, 2017], European consensus on the diagnosis and management of iron deficiency and anaemia in inflammatory bowel diseases [Dignass, 2015], and The first European evidence-based consensus on extra-intestinal manifestations in inflammatory bowel disease [Harbord, 2016], the European Society for Clinical Nutrition and Metabolism (ESPEN) guideline Clinical nutrition in inflammatory bowel disease [Bischoff, 2023], the British Society of Gastroenterology (BSG) Guidelines for the management of inflammatory bowel disease in adults [Lamb, 2019], the European Society of Paediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN) consensus document Guidelines for the management of paediatric Crohn's disease [van Rheenan, 2021], and expert opinion in review articles on Crohn's disease [BMJ Best Practice, 2023], [Ranasinghe, 2024] and Crohn's disease in children [Mitchel, 2024].
The rationale for the individual recommendations is discussed in the relevant basis for recommendation sections.
How this topic was developed
This section briefly describes the processes used in developing and updating this topic. Further details on the full process can be found in the About Us section and on the Clarity Informatics website.
Search strategy
Scope of search
A literature search was conducted for guidelines, systematic reviews and randomized controlled trials on primary care management of Crohn's disease.
Search dates
August 2017 - May 2024
Key search terms
Various combinations of searches were carried out. The terms listed below are the core search terms that were used for Medline.
- exp inflammatory bowel disease/, inflammatory bowel disease.tw., exp crohn's disease/, Crohn's disease.tw.
Sources of guidelines
- National Institute for Health and Care Excellence (NICE)
- Scottish Intercollegiate Guidelines Network (SIGN)
- Royal College of Physicians
- Royal College of General Practitioners
- Royal College of Nursing
- NICE Evidence
- World Health Organization
- Guidelines International Network
- TRIP database
- Agency for Healthcare Research and Quality
- National Health and Medical Research Council (Australia)
- Royal Australian College of General Practitioners
- British Columbia Medical Association
- Canadian Medical Association
- Alberta Medical Association
- Michigan Quality Improvement Consortium
- Singapore Ministry of Health
- National Resource for Infection Control
- RefHELP NHS Lothian Referral Guidelines
- Medline (with guideline filter)
- Driver and Vehicle Licensing Agency
- NHS Health at Work (occupational health practice)
Sources of systematic reviews and meta-analyses
- The Cochrane Library:
- Systematic reviews
- Protocols
- Database of Abstracts of Reviews of Effects
- Medline (with systematic review filter)
- EMBASE (with systematic review filter)
Sources of health technology assessments and economic appraisals
- NIHR Health Technology Assessment programme
- The Cochrane Library:
- NHS Economic Evaluations
- Health Technology Assessments
- Canadian Agency for Drugs and Technologies in Health
- International Network of Agencies for Health Technology Assessment
Sources of randomized controlled trials
- The Cochrane Library:
- Central Register of Controlled Trials
- Medline (with randomized controlled trial filter)
- EMBASE (with randomized controlled trial filter)
Sources of evidence based reviews and evidence summaries
Sources of national policy
- Department of Health
- Health Management Information Consortium (HMIC)
Patient experiences
Sources of medicines information
The following sources are used by CKS pharmacists and are not necessarily searched by CKS information specialists for all topics. Some of these resources are not freely available and require subscriptions to access content.
Stakeholder engagement
Our policy
The external review process is an essential part of CKS topic development. Consultation with a wide range of stakeholders provides quality assurance of the topic in terms of:
- Clinical accuracy.
- Consistency with other providers of clinical knowledge for primary care.
- Accuracy of implementation of national guidance (in particular NICE guidelines).
- Usability.
Principles of the consultation process
- The process is inclusive and any individual may participate.
- To participate, an individual must declare whether they have any competing interests or not. If they do not declare whether or not they have competing interests, their comments will not be considered.
- Comments received after the deadline will be considered, but they may not be acted upon before the clinical topic is issued onto the website.
- Comments are accepted in any format that is convenient to the reviewer, although an electronic format is encouraged.
- External reviewers are not paid for commenting on the draft topics.
- Discussion with an individual or an organization about the CKS response to their comments is only undertaken in exceptional circumstances (at the discretion of the Clinical Editor or Editorial Steering Group).
- All reviewers are thanked and offered a letter acknowledging their contribution for the purposes of appraisal/revalidation.
- All reviewers are invited to be acknowledged on the website. All reviewers are given the opportunity to feedback about the external review process, enabling improvements to be made where appropriate.
Stakeholders
- Key stakeholders identified by the CKS team are invited to comment on draft CKS topics. Individuals and organizations can also register an interest to feedback on a specific topic, or topics in a particular clinical area, through the Getting involved section of the Clarity Informatics website.
- Stakeholders identified from the following groups are invited to review draft topics:
- Experts in the topic area.
- Professional organizations and societies (for example, Royal Colleges).
- Patient organizations, Clarity has established close links with groups such as Age UK and the Alzheimer’s Society specifically for their input into new topic development, review of current topic content and advice on relevant areas of expert knowledge.
- Guideline development groups where the topic is an implementation of a guideline.
- The British National Formulary team.
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- Reviewers are provided with clear instructions about what to review, what comments are particularly helpful, how to submit comments, and declaring interests.
Patient engagement
Clarity Informatics has enlisted the support and involvement of patients and lay persons at all stages in the process of creating the content which include:
- Topic selection
- Scoping of topic
- Selection of clinical scenarios
- First draft internal review
- Second draft internal review
- External review
- Final draft and pre-publication
Our lay and patient involvement includes membership on the editorial steering group, contacting expert patient groups, organizations and individuals.
Evidence exclusion criteria
Our policy
Scoping a literature search, and reviewing the evidence for CKS is a methodical and systematic process that is carried out by the lead clinical author for each topic. Relevant evidence is gathered in order that the clinical author can make fully informed decisions and recommendations. It is important to note that some evidence may be excluded for a variety of reasons. These reasons may be applied across all CKS topics or may be specific to a given topic.
Studies identified during literature searches are reviewed to identify the most appropriate information to author a CKS topic, ensuring any recommendations are based on the best evidence. We use the principles of the GRADE and PICOT approaches to assess the quality of published research. We use the principles of AGREE II to assess the quality of published guidelines.
Standard exclusions for scoping literature:
- Animal studies
- Original research is not written in English
Possible exclusions for reviewed literature:
- Sample size too small or study underpowered
- Bias evident or promotional literature
- Population not relevant
- Intervention/treatment not relevant
- Outcomes not relevant
- Outcomes have no clear evidence of clinical effectiveness
- Setting not relevant
- Not relevant to UK
- Incorrect study type
- Review article
- Duplicate reference
Organizational, behavioural and financial barriers
Our policy
The CKS literature searches take into consideration the following concepts, which are discussed at the initial scoping of the topic.
- Feasibility
- Studies are selected depending on whether the intervention under investigation is available in the NHS and can be practically and safely undertaken in primary care.
- Organizational and Financial Impact Analysis
- Studies are selected and evaluated on whether the intervention under investigations may have an impact on local clinical service provision or national impact on cost for the NHS. The principles of clinical budget impact analysis are adhered to, evaluated and recorded by the author. The following factors are considered when making this assessment and analysis.
- Eligible population
- Current interventions
- Likely uptake of new intervention or recommendation
- Cost of the current or new intervention mix
- Impact on other costs
- Condition-related costs
- In-direct costs and service impacts
- Time dependencies
- Cost-effectiveness or cost-benefit analysis studies are identified where available.
We also evaluate and include evidence from NICE accredited sources which provide economic evaluations of recommendations, such as NICE guidelines. When a recommended action may not be possible because of resource constraints, this is explicitly indicated to healthcare professionals by the wording of the CKS recommendation.
Declarations of interest
Our policy
Clarity Informatics requests that all those involved in the writing and reviewing of topics, and those involved in the external review process to declare any competing interests. Signed copies are securely held by Clarity Informatics and are available on request with the permission of the individual. A copy of the declaration of interest form which participants are asked to complete annually is also available on request. A brief outline of the declarations of interest policy is described here and full details of the policy is available on the Clarity Informatics website. Declarations of interests of the authors are not routinely published, however competing interests of all those involved in the topic update or development are listed below. Competing interests include:
- Personal financial interests
- Personal family interest
- Personal non-financial interest
- Non-personal financial gain or benefit
Although particular attention is given to interests that could result in financial gains or losses for the individual, competing interests may also arise from academic competition or for political, personal, religious, and reputational reasons. An individual is not obliged to seek out knowledge of work done for, or on behalf of, the healthcare industry within the departments for which they are responsible if they would not normally expect to be informed.
Who should declare competing interests?
Any individual (or organization) involved in developing, reviewing, or commenting on clinical content, particularly the recommendations should declare competing interests. This includes the authoring team members, expert advisers, external reviewers of draft topics, individuals providing feedback on published topics, and Editorial Steering Group members. Declarations of interest are completed annually for authoring team and editorial steering group members, and are completed at the start of the topic update and development process for external stakeholders.
Competing interests declared for this topic:
None.
References
- Akobeng,A.K. (2008) Crohn's disease: current treatment options. Archives of Disease in Childhood. 93(9), 787-792. [Abstract]
- Barberio, B., Zamani, M., Black, C.J., et al. (2021) Prevalence of symptoms of anxiety and depression in patients with inflammatory bowel disease: a systematic review and meta-analysis. Lancet Gastroenterology and Hepatology 6(5), 359-370. [Abstract]
- Baumgart, D.C. and Sandborn, W.J. (2012) Crohn's disease. Lancet 380(9853), 1590-1605. [Abstract] [Free Full-text]
- Bewtra, M., Kaiser, L.M., TenHave, T. and Lewis, J.D. (2013) Crohn's disease and ulcerative colitis are associated with elevated standardized mortality ratios: a meta-analysis. Inflammatory Bowel Disease 19(3), 599-613. [Abstract] [Free Full-text]
- Bischoff, S.C., Bager, P., Escher, J., et al. (2023) ESPEN guideline on Clinical Nutrition in inflammatory bowel disease. Clinical Nutrition 42(3), 352-379. [Abstract]
- BMJ Best Practice (2023) Crohn's disease. BMJ publishing group. https://bestpractice.bmj.com
- BNF (2024) British National Formulary. National Institute for Health and Care Excellence. https://bnf.nice.org.uk
- Cornish, J.A., Tan, E., Simillis, C., et al. (2008) The risk of oral contraceptives in the etiology of inflammatory bowel disease: a meta-analysis. American Journal of Gastroenterology 103(9), 2394-400. [Abstract]
- CoSRH (2016) Sexual and reproductive health for individuals with inflammatory bowel disease. College of Sexual and Reproductive Healthcare. http://www.cosrh.org [Free Full-text]
- Cummings, J.R., Kesav, S. and Travis, S.P. (2008) Medical management of Crohn's disease. British Medical Journal 336(7652), 1062-1066. [Abstract]
- Dignass, A.U., Gasche, C., Bettenworth, D., et al. (2015) European consensus on the diagnosis and management of iron deficiency and anaemia in inflammatory bowel diseases. Journal of Crohn's and Colitis 9(3), 211-222. [Abstract]
- Gionchetti, P., Dignass, A., Danese, S., et al. (2017) 3rd European evidence-based consensus on the diagnosis and management of Crohn's disease 2016. Part 2: surgical management and special situations. Journal of Crohn's and Colitis 11(2), 135-149. [Abstract]
- Gomollón, F., Dignass, A., Annese, V., et al. (2017) 3rd European evidence-based consensus on the diagnosis and management of Crohn's disease 2016. Part 1: diagnosis and medical management. Journal of Crohn's and Colitis 11(1), 3-25. [Abstract]
- Gordon, H., Biancone, L., Fiorino, G., et al. (2023) ECCO Guidelines on Inflammatory Bowel Disease and Malignancies. Journal of Crohn's and colitis 17(6), 827-853. [Abstract] [Free Full-text]
- Harbord, M., Annese, V., Vavricka, S.R., et al. (2016) The first European evidence-based consensus on extra-intestinal manifestations in inflammatory bowel disease. Journal of Crohn's and Colitis 10(3), 239-254. [Abstract] [Free Full-text]
- Kalla, R., Ventham, N.T., Satsangi, J. and Arnott, I.D. (2014) Crohn's disease. British Medical Journal 349, 1-11. [Abstract]
- Kaplan, G.G., Jackson, T., Sands, B.E., et al. (2008) The risk of developing Crohn's disease after an appendectomy: a meta-analysis. American Journal of Gastroenterology 103(11), 2925-2931. [Abstract]
- Kreijne, J.E., Lie, M.R., Vogelaar, L. and van der Woude, C.J. (2016) Practical guideline for fatigue management in inflammatory bowel disease. Journal of Crohn's and Colitis 10(1), 105-111. [Abstract]
- Lamb, C.A., Kennedy, N.A., Raine, T., et al. (2019) British Society of Gastroenterology consensus guidelines on the management of inflammatory bowel disease in adults. Gut 68(Supplement 3), 1-106. [Abstract] [Free Full-text]
- Levine, A., Koletzko, S., Turner, D., et al. (2014) ESPGHAN revised Porto Criteria for the diagnosis of inflammatory bowel disease in children and adolescents. Journal of Pediatric Gastroenterology and Nutrition 58(6), 795-806. [Abstract]
- Loftus Jr,E.V. (2004) Clinical epidemiology of inflammatory bowel disease: incidence, prevalence, and environmental influences. Gastroenterology. 126(6), 1504-1517. [Abstract]
- Mahid, S.S., Minor, K.S., Soto, R.E., et al. (2006) Smoking and inflammatory bowel disease: a meta-analysis. Mayo Clinic Proceedings 81(11), 1462-1471. [Abstract]
- Mitchel, E. B. and Rosh, J. R. (2022) Pediatric Management of Crohn's Disease. Gastroenterology clinics of North America 51(2), 401-424. [Abstract] [Free Full-text]
- Molodecky, N.A., Soon, I.S., Rabi, D.M., et al. (2012) Increasing incidence and prevalence of the inflammatory bowel diseases with time, based on systematic review. Gastroenterology 142(1), 46-54. [Abstract]
- Mowat, C., Cole, A., Windsor, A., et al. (2011) Guidelines for the management of inflammatory bowel disease in adults. Gut 60(5), 571-607. [Abstract]
- NICE (2013) Faecal calprotectin diagnostic tests for inflammatory diseases of the bowel. National Institute for Health and Care Excellence. http://www.nice.org.uk [Free Full-text]
- NICE (2019) Crohn’s disease: management. National Institute for Health and Care Excellence. http://www.nice.org.uk [Free Full-text]
- NICE (2020) QS81: Inflammatory bowel disease. National Institute of Health and Care Excellence. https://www.nice.org.uk [Free Full-text]
- NICE (2022) Colorectal cancer prevention: colonoscopic surveillance in adults with ulcerative colitis, Crohn's disease or adenomas. National Institute of Health and Care Excellence. https://www.nice.org.uk [Free Full-text]
- Oliveira, S. and Monteiro, I.M (2017) Diagnosis and management of inflammatory bowel disease in children. British Medical Journal 357, 1-15. [Abstract]
- Peyrin-Biroulet, L., Loftus Jr, E.V., Colombel, J.F. and Sandborn, W.J. (2010) The natural history of adult Crohn's disease in population-based cohorts. American Journal of Gastroenterology 105(2), 289-297. [Abstract]
- Ranasinghe, I.R. and Hsu, R. (2024) Crohn Disease. In: StatPearls [Internet] Treasure Island (FL). StatPearls Publishing;. https://pubmed.ncbi.nlm.nih.gov/28613792 [Free Full-text]
- Sandhu, B.K., Fell, J.M., Beattie, R.M., et al. (2010) Guidelines for the management of inflammatory bowel disease in children in the United Kingdom. Journal of Pediatric Gastroenterology and Nutrition 50, S1-S13. [Abstract]
- Thia, K.T., Sandborn, W.J., Harmsen, W.S. et al. (2010) Risk factors associated with progression to intestinal complications of Crohn's disease in a population-based cohort. Gastroenterology 139(4), 1147-1155. [Abstract]
- van der Woude, C.J., Ardizzone, S., Bengtson, M.B., et al. (2015) The second European evidenced-based consensus on reproduction and pregnancy in inflammatory bowel disease. Journal of Crohn's and Colitis 9(2), 107-124. [Abstract]
- van Rheenen, P.F., Aloi, M., Assa, A., et al. (2021) The Medical Management of Paediatric Crohn's Disease: an ECCO-ESPGHAN Guideline Update. Journal of Crohn's and colitis 15(2), 171-194. [Abstract] [Free Full-text]
- Zhao, M., Gönczi, L., Lakatos, P.L. and Burisch, J. (2021) The Burden of Inflammatory Bowel Disease in Europe in 2020. Journal of Crohns and Colitis 15(9), 1573-1587. [Abstract] [Free Full-text]