People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about 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.
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]
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]
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 colorectal cancer prevention: colonoscopic surveillance in adults with ulcerative colitis, Crohn's disease or adenomas and suspected cancer: recognition and referral. [2013]
To induce remission in people with a mild-to-moderate first presentation or inflammatory exacerbation of proctitis, offer a topical aminosalicylate as first-line treatment. [2019]
In May 2019, this was an off-label use of some topical aminosalicylates for children and young people. See NICE's information on prescribing medicines.
If remission is not achieved within 4 weeks, consider adding an oral aminosalicylate. [2019]
In May 2019, this was an off-label use of some oral aminosalicylates for children and young people. See NICE's information on prescribing medicines.
If further treatment is needed, consider adding a time-limited course of a topical or an oral corticosteroid. [2019]
In May 2019, this was an off-label use of beclometasone dipropionate in most situations. See NICE's information on prescribing medicines.
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. [2019]
In May 2019, this was an off-label use of beclometasone dipropionate in most situations. See NICE's information on prescribing medicines.
For people who cannot tolerate aminosalicylates, consider a time-limited course of a topical or an oral corticosteroid. [2019]
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]
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]
If further treatment is needed, stop topical treatments and offer an oral aminosalicylate and a time-limited course of an oral corticosteroid. [2019]
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]
For people who cannot tolerate aminosalicylates, consider a time-limited course of a topical or an oral corticosteroid. [2019]
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]
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]
For people who cannot tolerate aminosalicylates, consider a time-limited course of an oral corticosteroid. [2019]
For guidance on biologics and Janus kinase inhibitors for treating moderately to severely active ulcerative colitis, see the:
For a short explanation of why the committee made the 2019 recommendations and how they might affect practice, see the rationale and impact section on inducing remission in people with mild-to-moderate ulcerative colitis.
Full details of the evidence and the committee's discussion are in evidence review: induction of remission in mild-to-moderate ulcerative colitis.
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]
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 the recommendation on assess and document in the section on assessing likelihood of needing surgery). [2013]
Consider intravenous ciclosporin 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]
In May 2019, this was an off-label use of ciclosporin. See NICE's information on prescribing medicines.
Consider adding intravenous ciclosporin 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]
In May 2019, this was an off-label use of ciclosporin. See NICE's information on prescribing medicines
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 NICE technology appraisal guidance on infliximab for acute exacerbations of ulcerative colitis]
In people who do not meet the criterion in the recommendation above on the use of infliximab in patients in whom ciclosporin is contraindicated or clinically inappropriate, infliximab should only be used for the treatment of acute exacerbations of severely active ulcerative colitis in clinical trials. [2008]
[This recommendation is from NICE technology appraisal guidance on infliximab for acute exacerbations of ulcerative colitis]
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]
Assess and document on admission, and then daily, the likelihood of needing surgery for people admitted to hospital with acute severe ulcerative colitis. [2013]
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]
These recommendations apply to anyone with ulcerative colitis considering elective surgery. The principles can also be applied to people requiring emergency surgery.
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]
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]
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]
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]
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]
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]
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 alone (daily or intermittent) or
an oral aminosalicylate plus a topical aminosalicylate (daily or intermittent) or
an oral aminosalicylate alone, explaining that this may not be as effective as combined treatment or an intermittent topical aminosalicylate alone. [2013]
In May 2019, note that this was an off-label use of some aminosalicylates for children and young people. See NICE's information on prescribing medicines
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]
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 (dosing requirements for children should be calculated by body weight, as described in the BNF)
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]
In May 2019, this was an off-label use of some oral aminosalicylates for children and young people. See NICE's information on prescribing medicines.
Consider oral azathioprine or oral mercaptopurine 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]
In May 2019, this was an off-label use of some brands of azathioprine and mercaptopurine. See NICE's information on prescribing medicines.
To maintain remission after a single episode of acute severe ulcerative colitis:
consider oral azathioprine or oral mercaptopurine
consider oral aminosalicylates if azathioprine and/or mercaptopurine are contraindicated or the person cannot tolerate them. [2013]
In May 2019, this was an off-label use of some brands of azathioprine and mercaptopurine. See NICE's information on prescribing medicines.
Consider a once-daily dosing regimen for oral aminosalicylates 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]
In May 2019, this was an off-label use of some oral aminosalicylates. See NICE's information on prescribing medicines.
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]
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]
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]
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]
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]
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]
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]
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]
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).
| Topic | 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.
Disease severity in table 2 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.
A course of corticosteroids used to treat active disease, normally given for 4 to 8 weeks (depending on the steroid).