1 Recommendations

The following guidance is based on the best available evidence. The full guideline gives details of the methods and the evidence used to develop the guidance.

The wording used in the recommendations in this guideline (for example words such as 'offer' and 'consider') denotes the certainty with which the recommendation is made (the strength of the recommendation). See About this guideline for details.

Adults, children and young people

This guideline covers people of all ages with a diagnosis of ulcerative colitis. All recommendations relate to adults, children and young people unless specified otherwise. These terms are defined as follows:

  • adults: 18 years or older

  • children: 11 years or younger

  • young people: 12 to 17 years.

Severity of ulcerative colitis

Mild, moderate and severe

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 (no. per day)

Fewer than 4

4–6

6 or more plus at least one 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.

Subacute

The term 'subacute' is also used in this guideline to describe ulcerative colitis, but this is not covered by the Truelove and Witts' severity index or the PUCAI. The following definition (based on that in NICE technology appraisal guidance 140) is used: subacute ulcerative colitis is defined as moderately to severely active ulcerative colitis that would normally be managed in an outpatient setting and does not require hospitalisation or the consideration of urgent surgical intervention.

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 Patient experience in adult NHS services (NICE clinical guideline 138).

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 Medicines adherence (NICE clinical guideline 76).

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 clinical guidelines on:

1.2 Inducing remission in people with ulcerative colitis

Treating mild to moderate ulcerative colitis: step 1 therapy

Proctitis and proctosigmoiditis

1.2.1 To induce remission in people with a mild to moderate first presentation or inflammatory exacerbation of proctitis or proctosigmoiditis:

  • offer a topical aminosalicylate[9] alone (suppository or enema, taking into account the person's preferences) or

  • consider adding an oral aminosalicylate[10] to a topical aminosalicylate or

  • consider an oral aminosalicylate[10] alone, taking into account the person's preferences and explaining that this is not as effective as a topical aminosalicylate alone or combined treatment.

1.2.2 To induce remission in people with a mild to moderate first presentation or inflammatory exacerbation of proctitis or proctosigmoiditis who cannot tolerate or who decline aminosalicylates, or in whom aminosalicylates are contraindicated:

  • offer a topical corticosteroid or

  • consider oral prednisolone[11], taking into account the person's preferences.

1.2.3 To induce remission in people with subacute proctitis or proctosigmoiditis, consider oral prednisolone[11], taking into account the person's preferences.

Left-sided and extensive ulcerative colitis

1.2.4 To induce remission in adults with a mild to moderate first presentation or inflammatory exacerbation of left-sided or extensive ulcerative colitis:

  • offer a high induction dose of an oral aminosalicylate

  • consider adding a topical aminosalicylate or oral beclometasone dipropionate[12], taking into account the person's preferences.

1.2.5 To induce remission in children and young people with a mild to moderate first presentation or inflammatory exacerbation of left-sided or extensive ulcerative colitis:

  • offer an oral aminosalicylate[10],[13]

  • consider adding a topical aminosalicylate[9] or oral beclometasone dipropionate[14], taking into account the person's preferences (and those of their parents or carers as appropriate).

1.2.6 To induce remission in people with a mild to moderate first presentation or inflammatory exacerbation of left-sided or extensive ulcerative colitis who cannot tolerate or who decline aminosalicylates, in whom aminosalicylates are contraindicated or who have subacute ulcerative colitis, offer oral prednisolone[11].

Treating mild to moderate ulcerative colitis: step 2 therapy

All extents of disease

1.2.7 Consider adding oral prednisolone[11] to aminosalicylate therapy to induce remission in people with mild to moderate ulcerative colitis if there is no improvement within 4 weeks of starting step 1 aminosalicylate therapy or if symptoms worsen despite treatment. Stop beclometasone dipropionate if adding oral prednisolone.

1.2.8 Consider adding oral tacrolimus[15] to oral prednisolone to induce remission in people with mild to moderate ulcerative colitis if there is an inadequate response to oral prednisolone after 2–4 weeks.

1.2.9 For guidance on infliximab for treating subacute ulcerative colitis (all extents of disease), refer to Infliximab for subacute manifestations of ulcerative colitis (NICE technology appraisal guidance 140).

Treating acute severe ulcerative colitis: all extents of disease

The multidisciplinary team

1.2.10 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.

Step 1 therapy

1.2.11 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 1.2.16).

1.2.12 Consider intravenous ciclosporin[16] 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.

Step 2 therapy

1.2.13 Consider adding intravenous ciclosporin[16] 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.

1.2.14 For guidance on infliximab for treating acute severe ulcerative colitis (all extents of disease) in people for whom ciclosporin is contraindicated or clinically inappropriate, refer to Infliximab for acute exacerbations of ulcerative colitis (NICE technology appraisal guidance 163).

Monitoring treatment

1.2.15 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/or their parents or carers as appropriate).

Assessing likelihood of needing surgery

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

1.2.17 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 (CRP) above 45 mg/litre (bear in mind that normal values may be different in pregnant women).

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.

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

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.

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.

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.

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.

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[9] alone (daily or intermittent) or

  • an oral aminosalicylate[10] plus a topical aminosalicylate[9] (daily or intermittent) or

  • an oral aminosalicylate[10] alone, explaining that this may not be as effective as combined treatment or an intermittent topical aminosalicylate alone.

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.

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[10],[13] 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.

All extents of disease

1.4.4 Consider oral azathioprine[17] or oral mercaptopurine[17] to maintain remission:

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

  • if remission is not maintained by aminosalicylates.

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

  • consider oral azathioprine[17] or oral mercaptopurine[17]

  • consider oral aminosalicylates in people who cannot tolerate or who decline azathioprine and/or mercaptopurine, or in whom azathioprine and/or mercaptopurine are contraindicated.

Dosing regimen for oral aminosalicylates

1.4.6 Consider a once-daily dosing regimen for oral aminosalicylates[18] 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.

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 no treatment, and discuss this with her. Include information relevant to a potential admission for an acute severe inflammatory exacerbation.

1.6 Monitoring

Monitoring bone health

Adults

1.6.1 For recommendations on assessing the risk of fragility fracture in adults, refer to Osteoporosis: assessing the risk of fragility fracture (NICE clinical guideline 146).

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.

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 3–6 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.

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.

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.

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 facilitated where possible and they should be instructed on how to do this.

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 Patient experience in adult NHS services (NICE clinical guideline 138) in relation to continuity of care.



[8] This guideline is being updated (publication date to be confirmed).

[9] At the time of publication (June 2013), 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 Good practice in prescribing and managing medicines and devices for further information.

[10] At the time of publication (June 2013), 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 Good practice in prescribing and managing medicines and devices for further information.

[11] Refer to the BNF for guidance on stopping oral prednisolone therapy.

[12] At the time of publication (June 2013), 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'. 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 Good practice in prescribing and managing medicines and devices for further information.

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

[14] At the time of publication (June 2013), beclometasone dipropionate 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 Good practice in prescribing and managing medicines and devices for further information.

[15] At the time of publication (June 2013), tacrolimus 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 Good practice in prescribing and managing medicines and devices for further information.

[16] At the time of publication (June 2013), 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 Good practice in prescribing and managing medicines and devices for further information.

[17] Although use is common in UK clinical practice, at the time of publication (June 2013) azathioprine and mercaptopurine 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 Good practice in prescribing and managing medicines and devices for further information.

[18] At the time of publication (June 2013), 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 Good practice in prescribing and managing medicines and devices for further information.

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