Inflammatory Bowel Disease Toolkit

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

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

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

Key facts

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

Overview of IBD and Top tips

Overview of IBD

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

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

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

Top tips

  1. Most patients are diagnosed in their teens and twenties, although IBD can develop in any age group from infants to the elderly.
  2. Diarrhoea is the most common symptom, but this does not present in all adults or up to 44% of children with IBD in whom delayed growth and development may occur. Other symptoms can include weight loss, abdominal pain or cramping, bloating, lethargy, fevers, night sweats, and anaemia.
  3. Family history of IBD and extra-intestinal manifestations, including skin, eye and joint problems should be considered increased signs for suspicion.
  4. Faecal calprotectin testing can help differentiate between IBD and Irritable Bowel Syndrome, facilitating appropriate referral, and is recommended by NICE – however, note that IBD can occur in patients with a previous diagnosis of Irritable Bowel Syndrome (IBS). 
  5. Support for the significant psychological and nutritional impact of IBD is very important
  6. Multidisciplinary team working between primary and secondary care, drawing on the skills and expertise of IBD nurses, is key to supporting patients and ensuring effective shared care
  7. Malabsorption can occur in patients, and patients can be at increased risk of osteoporosis and anaemia
  8. Patients with IBD have an increased risk of bowel cancer, particularly in those with more extensive or active disease. For patients with Ulcerative Colitis, surveillance should begin 10 years after diagnosis and be repeated every 3-5 years unless there are specific risk factors including primary sclerosing cholangitis (an uncommon chronic liver disease in which the bile ducts inside and outside the liver progressively decrease in size die to inflammation and scarring) or a strong family history of colorectal cancer.

Identifying IBD

Top tips

  1. Be aware that most patients are diagnosed in their teens and twenties, although IBD can develop in any age group from infants to the elderly
  2. Consider IBD in patients with unexplained fever, weight loss, anaemia, a family history of IBD or extra-intestinal manifestations (EIM) such as arthritis, erythema nodosum, pyoderma gangrenosum, primary sclerosing cholangitis, uveitis, iritis or episcleritis).  Up to 50% of patients with IBD experience at least one EIM, which can present before IBD is diagnosed.
  3. Diarrhoea is the most common symptom, but this is not present in all adults or up to 44% of children with IBD in whom delayed growth and development may occur. Other symptoms can include weight loss, abdominal pain or cramping, bloating, lethargy, fevers, night sweats, and anaemia. Constipation can occur in some patients.
  4. The symptoms can overlap with many other lower gastrointestinal conditions, including bowel cancer, coeliac disease, endometriosis and ovarian cancer, and IBD can occur in patients with a previous diagnosis of Irritable Bowel Syndrome (IBS).
  5. Faecal calprotectin testing can help differentiate between IBD and Irritable Bowel Syndrome, facilitating appropriate referral, and is recommended by NICE – however, note that IBD can occur in patients with a previous diagnosis of Irritable Bowel Syndrome (IBS) whose symptoms change. Inflammatory markers and faecal calprotectin can both be negative in some patients, therefore consider referring patients with persistent symptoms.
  6. A quick response is essential in the case of a severe, acute flare-up, which carries a small risk of death due to sepsis or acute kidney injury.

Faecal calprotectin 

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

Examples of local referral pathways

Managing IBD

Top tips

  1. Inflammatory Bowel Disease follows an often unpredictable, relapsing-remitting course and, as a result, education, employment, personal relationships and social and family life may all be affected. The frequent and urgent need for the toilet, together with pain and fatigue, can severely affect self-esteem and social functioning, particularly among the young and newly diagnosed.
  2. A quick response is essential in the case of a severe, acute flare-up, which carries a small risk of death
  3. Multidisciplinary team working between primary and secondary care, drawing on the skills and expertise of IBD nurses, is key to supporting patients and ensuring effective shared care.
  4. Voluntary organisations can provide a range of information and support services, including helplines, accredited resources, online forums and local networks.

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

Top 10 essentials of a good IBD team (taken from My Crohn's and Colitis Care)

Nutrition

Malnutrition in Crohn's Disease is common with up to 75% of adult inpatients experiencing weight loss. 

Growth retardation has been reported in up to 40% of children and adolescents with IBD and up to 60% have decreased muscle and body fat stores.

Top tips:

  1. Maintaining a balanced weight is an important aspect of IBD management. Referral to a specialist dietitian is advisable.
  2. Enteral nutrition can be an effective first line therapy for children with Crohn’s Disease.

Psychological support

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

Contraception, fertility & pregnancy

Top tips:

  1. Increased bowel transit times can reduce the effectiveness of oral contraceptives in women with small bowel disease and malabsorption.
  2. Pregnancy should be avoided when taking, and for three months after stopping, methotrexate and mycophenolate (male and female partners)
  3. Pregnancy should be avoided when taking, and for six months after stopping, TNF-α (biologic) agents
  4. Specific guidance should be sought about all other IBD medication when trying to conceive, during pregnancy or when breastfeeding
  5. Fertility is only usually reduced in patients with IBD if their disease is active or if they have adhesions from surgery affecting the patency of their fallopian tubes
  6. Sulfasalazine can cause a reversible drop in sperm count and motility
  7. Vaginal deliveries are appropriate for most women with IBD, but those with perianal disease or ileoanal pouches will need to discuss this with their obstetrician.

Extra-Intestinal manifestations of IBD

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

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

  • Up to 50% of patients with IBD experience at least one extra-intestinal manifestation (EIM), which can present before IBD is diagnosed
  • EIMs can include associated arthritis (approximately 15-20% of Crohn’s Disease Patients and approximately 10% of ulcerative colitis patients), skin (erythema nodosum or pyoderma gangrenosum, primary sclerosing cholangitis (more common in patients with ulcerative colitis) or ocular complications (uveitis, iritis or episcleritis)
  • EIMs adversely impact upon patients’ quality of life and some, such as primary sclerosing cholangitis (PSC) or venous thromboembolism (VTE), can be life-threatening.
  • The probability of developing EIMs increases with disease duration and in patients who already have one EIM. 
  • EIMs are more common in Crohn’s Disease than Ulcerative Colitis, particularly in patients with colonic Crohn’s Disease
  • Some EIMs, such as iritis/uveitis, are more common in women, whereas PSC and ankylosing spondylitis are more common in males.
  • Most EIMs run in parallel with intestinal disease activity.

Medication and flare management

There is currently no cure for IBD.  

Around 50% of patients experience at least one relapse each year.

Top tips

  1. Confirm a flare is happening using blood inflammatory markers (CRP or ESR) or faecal calprotectin, but don’t delay starting treatment unless symptoms are mild.
  2. Discuss flare management with your IBD team unless they have issued a clear care plan for that patient. Inform them that a flare has occurred.
  3. Refer an acutely ill patient to the on-call medical team (significant fever, tachycardia, hypotension or anaemia).
  4. Use alternatives to oral steroids where possible – oral or rectal mesalazine or rectal steroids are the first-line treatment in UC. Increase the oral mesalazine dose to 4.8g/day if needed.
  5. Use oral steroids in CD, or UC not responding to mesalazines: start with 40mg/day prednisolone tapering by 5mg/week for 8 weeks = 252 x 5mg tablets in total.
  6. Consider budesonide 9mg/day for 8 weeks as an alternative to prednisolone for mild to moderate ileal or ileo-caecal CD (ECCO guidance recommends an additional 4 weeks at 6mg/day).
  7. Don’t overprescribe – patients can stockpile steroids and use them to self-treat rather than seek medical attention and have flares documented.
  8. Assess response to treatment after 2 weeks or sooner if clinical deterioration occurs.
  9. Discuss escalating the IBD therapy with your local IBD team if a patient requires more than 2 courses of steroids in 12 months, they can’t reduce the dose below the equivalent of 15mg prednisolone/day or a relapse occurs within 6 weeks of stopping steroids.
  10. Remember bone protection when using oral steroids – co-prescribe calcium + D3, and consider a bisphosphonate if the patient is >65 or has established osteopenia or osteoporosis but beware the risks of bisphosphonates including gastric irritation and osteonecrosis of the jaw
  11. In Crohn’s Disease, enteral nutrition is often the therapy of choice in children and can be used to induce remission in adults. 

Complications

Osteoporosis

Patients with IBD are at increased risk of osteoporosis due to the malabsorption of both vitamin D and calcium

Top tips:

  1. Measure bone mineral density (BMD) to assess fracture risk in people aged under 40 years who have a major risk factor, such as history of multiple fragility fracture, major osteoporotic fracture, or current or recent use of high-dose oral or high-dose systemic glucocorticoids (more than 7.5 mg prednisolone or equivalent per day for 3 months or longer).
  2. Bone-protective treatment should be started at the onset of glucocorticoid therapy in individuals at high risk of fracture, including some premenopausal women and younger men, particularly in individuals with a previous history of fracture or receiving high doses of glucocorticoids.

Colorectal carcinoma

Patients with IBD have an increased risk of bowel cancer, particularly in those with more extensive or active disease.

For patients with Ulcerative Colitis, surveillance should begin 10 years after diagnosis and be repeated every 3-5 years unless there are specific risk factors including primary sclerosing cholangitis or a strong family history of colorectal cancer.

Information and support for patients and carers

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

Voluntary organisations providing information and support

Crohn’s and Colitis UK is an accredited member of the Information Standard scheme for health and social care information producers.  Publications cover a wide range of subjects, including managing symptoms, diet, medication, education, employment and welfare benefits are research-based and produced in consultation with patients, carers, medical advisers and other health professionals.

Confidential support services provide practical information and support – 0300 222 5700, info@crhnsandcolitis.org.uk

CICRA

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

IA – the ileostomy and internal pouch Support Group 

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

Core - covering all digestive disorders

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

PINNT 

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

IBS Network

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

Online/digital support

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

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

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

Information for NHS managers and commissioning organisations

Cost and impact of Inflammatory Bowel Disease

Service requirements

This toolkit has been developed in partnership between the RCGP Clinical Innovation and Research Centre and Crohn's and Colitis UK. Please send any feedback or suggestions to circ@rcgp.org.uk

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