Recommendations

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.

Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

1.1 Patient information and support

1.1.1 Discuss the disease and associated symptoms, treatment options and monitoring:

  • with the person with ulcerative colitis and their family members or carers (as appropriate) and

  • within the multidisciplinary team (the composition of which should be appropriate for the age of the person) at every opportunity.

    Apply the principles in the NICE guideline on patient experience in adult NHS services. [2013]

1.1.2 Discuss the possible nature, frequency and severity of side effects of drug treatment for ulcerative colitis with the person, and their family members or carers (as appropriate). Refer to the NICE guideline on medicines adherence. [2013]

1.1.3 Give the person, and their family members or carers (as appropriate) information about their risk of developing colorectal cancer and about colonoscopic surveillance, in line with the NICE guidelines on:

1.2 Inducing remission in people with ulcerative colitis

Treating mild-to-moderate ulcerative colitis

Proctitis

1.2.1 To induce remission in people with a mild-to-moderate first presentation or inflammatory exacerbation of proctitis, offer a topical aminosalicylate[1] as first-line treatment. [2019]

1.2.2 If remission is not achieved within 4 weeks, consider adding an oral aminosalicylate[2]. [2019]

1.2.3 If further treatment is needed, consider adding a time-limited course of a topical or an oral corticosteroid[3]. [2019]

1.2.4 For people who decline a topical aminosalicylate:

  • consider an oral aminosalicylate as first-line treatment, and explain that this is not as effective as a topical aminosalicylate

  • if remission is not achieved within 4 weeks, consider adding a time-limited course of a topical or an oral corticosteroid[3]. [2019]

1.2.5 For people who cannot tolerate aminosalicylates, consider a time-limited course of a topical or an oral corticosteroid. [2019]

Proctosigmoiditis and left-sided ulcerative colitis

1.2.6 To induce remission in people with a mild-to-moderate first presentation or inflammatory exacerbation of proctosigmoiditis or left-sided ulcerative colitis, offer a topical aminosalicylate as first-line treatment. [2019]

1.2.7 If remission is not achieved within 4 weeks, consider:

  • adding a high-dose oral aminosalicylate to the topical aminosalicylate or

  • switching to a high-dose oral aminosalicylate and a time-limited course of a topical corticosteroid. [2019]

1.2.8 If further treatment is needed, stop topical treatments and offer an oral aminosalicylate and a time-limited course of an oral corticosteroid. [2019]

1.2.9 For people who decline any topical treatment:

  • consider a high-dose oral aminosalicylate alone, and explain that this is not as effective as a topical aminosalicylate

  • if remission is not achieved within 4 weeks, offer a time-limited course of an oral corticosteroid in addition to the high-dose aminosalicylate. [2019]

1.2.10 For people who cannot tolerate aminosalicylates, consider a time-limited course of a topical or an oral corticosteroid. [2019]

Extensive disease

1.2.11 To induce remission in people with a mild-to-moderate first presentation or inflammatory exacerbation of extensive ulcerative colitis, offer a topical aminosalicylate and a high-dose oral aminosalicylate as first-line treatment. [2019]

1.2.12 If remission is not achieved within 4 weeks, stop the topical aminosalicylate and offer a high-dose oral aminosalicylate with a time-limited course of an oral corticosteroid. [2019]

1.2.13 For people who cannot tolerate aminosalicylates, consider a time-limited course of an oral corticosteroid. [2019]

Biologics and Janus kinase inhibitors for moderately to severely active ulcerative colitis: all extents of disease

1.2.14 For guidance on biologics and Janus kinase inhibitors for treating moderately to severely active ulcerative colitis, see the NICE technology appraisal guidance on:

To find out why the committee made the 2019 recommendations on inducing remission in mild-to-moderate ulcerative colitis and how they might affect practice, see rationale and impact.

Treating acute severe ulcerative colitis: all extents of disease

The multidisciplinary team

1.2.15 For people admitted to hospital with acute severe ulcerative colitis:

  • ensure that a gastroenterologist and a colorectal surgeon collaborate to provide treatment and management

  • ensure that the composition of the multidisciplinary team is appropriate for the age of the person

  • seek advice from a paediatrician with expertise in gastroenterology when treating a child or young person

  • ensure that the obstetric and gynaecology team is included when treating a pregnant woman. [2013]

Step 1 therapy

1.2.16 For people admitted to hospital with acute severe ulcerative colitis (either a first presentation or an inflammatory exacerbation):

  • offer intravenous corticosteroids to induce remission and

  • assess the likelihood that the person will need surgery (see recommendation 1.2.22). [2013]

1.2.17 Consider intravenous ciclosporin[4] or surgery for people:

  • who cannot tolerate or who decline intravenous corticosteroids or

  • for whom treatment with intravenous corticosteroids is contraindicated.

    Take into account the person's preferences when choosing treatment. [2013]

Step 2 therapy

1.2.18 Consider adding intravenous ciclosporin[4] to intravenous corticosteroids or consider surgery for people:

  • who have little or no improvement within 72 hours of starting intravenous corticosteroids or

  • whose symptoms worsen at any time despite corticosteroid treatment.

    Take into account the person's preferences when choosing treatment. [2013]

1.2.19 Infliximab is recommended as an option for the treatment of acute exacerbations of severely active ulcerative colitis only in patients in whom ciclosporin is contraindicated or clinically inappropriate, based on a careful assessment of the risks and benefits of treatment in the individual patient. [2008]

[This recommendation is from infliximab for acute exacerbations of ulcerative colitis (NICE technology appraisal guidance 217)]

1.2.20 In people who do not meet the criterion in 1.2.19, infliximab should only be used for the treatment of acute exacerbations of severely active ulcerative colitis in clinical trials. [2008]

[This recommendation is from infliximab for acute exacerbations of ulcerative colitis (NICE technology appraisal guidance 217)]

Monitoring treatment

1.2.21 Ensure that there are documented local safety monitoring policies and procedures (including audit) for adults, children and young people receiving treatment that needs monitoring (aminosalicylates, tacrolimus, ciclosporin, infliximab, azathioprine and mercaptopurine). Nominate a member of staff to act on abnormal results and communicate with GPs and people with ulcerative colitis and their family members or carers (as appropriate). [2013]

Assessing likelihood of needing surgery

1.2.22 Assess and document on admission, and then daily, the likelihood of needing surgery for people admitted to hospital with acute severe ulcerative colitis. [2013]

1.2.23 Be aware that there may be an increased likelihood of needing surgery for people with any of the following:

  • stool frequency more than 8 per day

  • pyrexia

  • tachycardia

  • an abdominal X‑ray showing colonic dilatation

  • low albumin, low haemoglobin, high platelet count or C‑reactive protein above 45 mg/litre (bear in mind that normal values may be different in pregnant women). [2013]

1.3 Information about treatment options for people who are considering surgery

These recommendations apply to anyone with ulcerative colitis considering elective surgery. The principles can also be applied to people requiring emergency surgery.

Information when considering surgery

1.3.1 For people with ulcerative colitis who are considering surgery, ensure that a specialist (such as a gastroenterologist or a nurse specialist) gives the person and their family members or carers (as appropriate) information about all available treatment options, and discusses this with them. Information should include the benefits and risks of the different treatments and the potential consequences of no treatment. [2013]

1.3.2 Ensure that the person and their family members or carers (as appropriate) have sufficient time and opportunities to think about the options and the implications of the different treatments. [2013]

1.3.3 Ensure that a colorectal surgeon gives any person who is considering surgery and their family members or carers (as appropriate) specific information about what they can expect in the short and long term after surgery, and discusses this with them. [2013]

1.3.4 Ensure that a specialist (such as a colorectal surgeon, a gastroenterologist, an inflammatory bowel disease nurse specialist or a stoma nurse) gives any person who is considering surgery and their family members or carers (as appropriate) information about:

  • diet

  • sensitive topics such as sexual function

  • effects on lifestyle

  • psychological wellbeing

  • the type of surgery, the possibility of needing a stoma and stoma care. [2013]

1.3.5 Ensure that a specialist who is knowledgeable about stomas (such as a stoma nurse or a colorectal surgeon) gives any person who is having surgery and their family members or carers (as appropriate) specific information about the siting, care and management of stomas. [2013]

Information after surgery

1.3.6 After surgery, ensure that a specialist who is knowledgeable about stomas (such as a stoma nurse or a colorectal surgeon) gives the person and their family members or carers (as appropriate) information about managing the effects on bowel function. This should be specific to the type of surgery performed (ileostomy or ileoanal pouch) and could include the following:

  • strategies to deal with the impact on their physical, psychological and social wellbeing

  • where to go for help if symptoms occur

  • sources of support and advice. [2013]

1.4 Maintaining remission in people with ulcerative colitis

Proctitis and proctosigmoiditis

1.4.1 To maintain remission after a mild-to-moderate inflammatory exacerbation of proctitis or proctosigmoiditis, consider the following options, taking into account the person's preferences:

  • a topical aminosalicylate[1] alone (daily or intermittent) or

  • an oral aminosalicylate[2] plus a topical aminosalicylate[1] (daily or intermittent) or

  • an oral aminosalicylate[2] alone, explaining that this may not be as effective as combined treatment or an intermittent topical aminosalicylate alone. [2013]

Left-sided and extensive ulcerative colitis

1.4.2 To maintain remission in adults after a mild-to-moderate inflammatory exacerbation of left-sided or extensive ulcerative colitis:

  • offer a low maintenance dose of an oral aminosalicylate

  • when deciding which oral aminosalicylate to use, take into account the person's preferences, side effects and cost. [2013]

1.4.3 To maintain remission in children and young people after a mild-to-moderate inflammatory exacerbation of left-sided or extensive ulcerative colitis:

  • offer an oral aminosalicylate[2],[5]

  • when deciding which oral aminosalicylate to use, take into account the person's preferences (and those of their parents or carers as appropriate), side effects and cost. [2013]

All extents of disease

1.4.4 Consider oral azathioprine[6] or oral mercaptopurine[6] to maintain remission:

  • after 2 or more inflammatory exacerbations in 12 months that require treatment with systemic corticosteroids or

  • if remission is not maintained by aminosalicylates. [2013]

1.4.5 To maintain remission after a single episode of acute severe ulcerative colitis:

  • consider oral azathioprine[6] or oral mercaptopurine[6]

  • consider oral aminosalicylates if azathioprine and/or mercaptopurine are contraindicated or the person cannot tolerate them. [2013]

Dosing regimen for oral aminosalicylates

1.4.6 Consider a once-daily dosing regimen for oral aminosalicylates[7] when used for maintaining remission. Take into account the person's preferences, and explain that once-daily dosing can be more effective, but may result in more side effects. [2013]

1.5 Pregnant women

1.5.1 When caring for a pregnant woman with ulcerative colitis:

  • Ensure effective communication and information-sharing across specialties (for example, primary care, obstetrics and gynaecology, and gastroenterology).

  • Give her information about the potential risks and benefits of medical treatment to induce or maintain remission and of not having treatment, and discuss this with her. Include information relevant to a potential admission for an acute severe inflammatory exacerbation. [2013]

1.6 Monitoring

Monitoring bone health

Adults

1.6.1 For recommendations on assessing the risk of fragility fracture in adults, refer to the NICE guideline on osteoporosis: assessing the risk of fragility fracture. [2013]

Children and young people

1.6.2 Consider monitoring bone health in children and young people with ulcerative colitis in the following circumstances:

  • during chronic active disease

  • after treatment with systemic corticosteroids

  • after recurrent active disease. [2013]

Monitoring growth and pubertal development in children and young people

1.6.3 Monitor the height and body weight of children and young people with ulcerative colitis against expected values on centile charts (and/or z scores) at the following intervals according to disease activity:

  • every 3 to 6 months:

    • if they have an inflammatory exacerbation and are approaching or undergoing puberty or

    • if there is chronic active disease or

    • if they are being treated with systemic corticosteroids

  • every 6 months during pubertal growth if the disease is inactive

  • every 12 months if none of the criteria above are met. [2013]

1.6.4 Monitor pubertal development in young people with ulcerative colitis using the principles of Tanner staging, by asking screening questions and/or carrying out a formal examination. [2013]

1.6.5 Consider referral to a secondary care paediatrician for pubertal assessment and investigation of the underlying cause if a young person with ulcerative colitis:

  • has slow pubertal progress or

  • has not developed pubertal features appropriate for their age. [2013]

1.6.6 Monitoring of growth and pubertal development:

  • can be done in a range of locations (for example, at routine appointments, acute admissions or urgent appointments in primary care, community services or secondary care)

  • should be carried out by appropriately trained healthcare professionals as part of the overall clinical assessment (including disease activity) to help inform the need for timely investigation, referral and/or interventions, particularly during pubertal growth.

    If the young person prefers self-assessment for monitoring pubertal development, this should be allowed if possible and they should be instructed on how to do this. [2013]

1.6.7 Ensure that relevant information about monitoring of growth and pubertal development and about disease activity is shared across services (for example, community, primary, secondary and specialist services). Apply the principles in the NICE guideline on patient experience in adult NHS services in relation to continuity of care. [2013]

Terms used in this guideline

Mild, moderate and severe ulcerative colitis

In this guideline, the categories of mild, moderate and severe are used to describe ulcerative colitis:

  • In adults these categories are based on the Truelove and Witts' severity index (see table 1). This table is adapted from the Truelove and Witts' criteria.

  • In children and young people these categories are based on the Paediatric Ulcerative Colitis Activity Index (PUCAI; see table 2).

Table 1 Truelove and Witts' severity index

Mild

Moderate

Severe

Bowel movements (number per day)

Fewer than 4

4–6

6 or more plus at least 1 of the features of systemic upset (marked with * below)

Blood in stools

No more than small amounts of blood

Between mild and severe

Visible blood

Pyrexia (temperature greater than 37.8°C) *

No

No

Yes

Pulse rate greater than 90 bpm *

No

No

Yes

Anaemia *

No

No

Yes

Erythrocyte sedimentation rate (mm/hour) *

30 or below

30 or below

Above 30

© Copyright British Medical Journal, 29 October 1955. Reproduced with permission.

Table 2 Paediatric Ulcerative Colitis Activity Index (PUCAI)

Disease severity is defined by the following scores:

  • severe: 65 or above

  • moderate: 35–64

  • mild: 10–34

  • remission (disease not active): below 10.

Item

Points

1.

Abdominal pain

No pain

Pain can be ignored

Pain cannot be ignored

0

5

10

2.

Rectal bleeding

None

Small amount only, in less than 50% of stools

Small amount with most stools

Large amount (50% of the stool content)

0

10

20

30

3.

Stool consistency of most stools

Formed

Partially formed

Completely unformed

0

5

10

4.

Number of stools per 24 hours

0–2

3–5

6–8

>8

0

5

10

15

5.

Nocturnal stools (any episode causing wakening)

No

Yes

0

10

6.

Activity level

No limitation of activity

Occasional limitation of activity

Severe restricted activity

0

5

10

Sum of PUCAI (0–85)

© Copyright The Hospital for Sick Children, Toronto, Canada, 2006. Reproduced with permission.

Time-limited course of oral corticosteroids

A course of corticosteroids used to treat active disease, normally given for 4 to 8 weeks (depending on the steroid).



[1] At the time of publication (May 2019), some topical aminosalicylates did not have a UK marketing authorisation for this indication in children and young people. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council's Prescribing guidance: prescribing unlicensed medicines for further information.

[2] At the time of publication (May 2019), some oral aminosalicylates did not have a UK marketing authorisation for this indication in children and young people. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council's Prescribing guidance: prescribing unlicensed medicines for further information.

[3] At the time of publication (May 2019), beclometasone dipropionate only has a UK marketing authorisation 'as add-on therapy to 5‑ASA containing drugs in patients who are non-responders to 5-ASA therapy in active phase'. Additionally, budesonide (oral or rectal) and prednisolone foam are not licensed in children. For use outside these licensed indications, the prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council's Prescribing guidance: prescribing unlicensed medicines for further information.

[4] At the time of publication (May 2019), ciclosporin did not have a UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council's Prescribing guidance: prescribing unlicensed medicines for further information.

[5] Dosing requirements for children should be calculated by body weight, as described in the BNF.

[6] Although use is common in UK clinical practice, at the time of publication (May 2019) not all brands of azathioprine and mercaptopurine had a UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council's Prescribing guidance: prescribing unlicensed medicines for further information.

[7] At the time of publication (May 2019), not all oral aminosalicylates had a UK marketing authorisation for once-daily dosing. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council's Prescribing guidance: prescribing unlicensed medicines for further information.

  • National Institute for Health and Care Excellence (NICE)