What GPs Need to Know About NICE Ulcerative Colitis Guidance

Dr Kevin Barrett


August 11, 2020

This article originally appeared on Univadis, part of the Medscape Professional Network. This transcript has been edited for clarity.

Ulcerative colitis (UC) is a condition that can affect so many of our patients in so many different ways and it can be hard for us as GPs to recognise it and manage it appropriately.

I'm Kevin Barrett. I am a GP in Hertfordshire. I work with Crohn's and Colitis UK and the Royal College of General Practitioners as part of their inflammatory bowel disease spotlight project.

The National Institute for Health and Care Excellence (NICE) has updated the guidance because there is a wide variety of care across the UK. Some areas provide fantastic care with great access to outpatient appointments and inflammatory bowel disease nurses, whilst other areas find it hard to recruit, and lots of the care can be left up to the GPs to manage.

Interpreting Guidance

UC can be a condition that is managed quite a lot in secondary care. This film is there to help GPs interpret that guidance, bring it to life, and make it real for us and for our patients.

UC is a condition that affects at least 146,000 people in the UK. It affects the bowel only. It generally affects the distal end of the large bowel and affects the lining and mucosal, rather than being a transmural disease.

Genetics do play a part, however, there is no evidence that diet or lifestyle play a part in triggering it off.

There is some evidence that smokers are slightly less likely to get it than non-smokers. However, the harmful effects of smoking far outweigh any potential protective effects that one might get from it.

Ulcerative colitis is a condition that can affect people of any age, although it typically effects people in their late teens and early 20s, with a secondary peak later on in people aged in their 50s and 60s, although the evidence is showing that those peaks are flattening off as time develops.

Large Bowel

UC is a condition that affects the large bowel only. It can affect different sections in different patients. Some patients just get proctitis. Some patients it is the rectosigmoid area that is affected. Some patients get a left-sided disease that goes up to the splenic flexure. And some patients get a pancolitis that affects all of the large bowel.

As well as it affecting the bowel, there are extra-intestinal effects that occur with it, so it can affect the joints, liver, eyes, and skin.

UC can present in a number of different ways in primary care.

It can be very straightforward to diagnose, so patients can present with typical bloody diarrhoea, urgency, weight loss. Those are very typical and obvious symptoms. However, some patients don't always get those, and can present just with a gradual change in their bowel habit, not necessarily with blood in their stool.

UC does not always affect just the bowel though. There are some patients who present with symptoms affecting their joints, their skin, their eyes, and their liver.

Overlapping Symptoms

The symptoms of ulcerative colitis can overlap with those of so many other different conditions as well, from colorectal cancer, through to ovarian cancer, endometriosis, and a range of other abdominal conditions too.

There is an increased risk of bowel cancer in patients with ulcerative colitis. NICE states that a typical patient with ulcerative colitis can have a risk of colorectal cancer of up to 18%, 30 years from the date they were diagnosed, which means when a patient is diagnosed in their 20s and 30s, by the time they are 50 or 60, that is almost a 1 in 6 chance of having colorectal cancer.

The diagnosis of ulcerative colitis has to be done on histology, so it is not something that we can actually make a formal diagnosis of in primary care. We'd think about suspecting it. The symptoms and history are really key, and really important, as with lots of things in primary care.

Examining the patient's abdomen is important and actually doing a rectal examination can give us a lot of information, too.

Our role as GPs is to take a good history, examine the patient, exclude red flag symptoms, and investigate appropriately.

Patient Involvement

Involving the patient is always important, but particularly so with UC as these patients are often young and they are either still in education, starting careers or starting families. They have responsibilities that need to be managed as well, and those aspects of their lives are really important in making decisions about their treatment and their ongoing care.

The NICE guidance is very clear that patients should be involved with this, as with all things, that they should be at the centre of their care, involved in their discussions, talked through the various options, what their treatments are, ensure that they are aware of the screening for colorectal cancer, the risk of osteoporosis, the risk of long-term steroid use, malnutrition, contraception, fertility. These are all key things that our patients should be partners with.


The investigation of ulcerative colitis in primary care involves taking blood tests, for full blood count to look for anaemia, and CRP or ESR to look for inflammation.

If those tests are raised, then the suspicion of ulcerative colitis is quite high, whereas if they are normal, then it may be worth considering doing a faecal calprotectin test.

Faecal calprotectin is a calcium-binding protein that is released from inflamed cells, and the levels of calprotectin correlate inflammation within the bowel.

If the levels are high, that indicates that there may be something significant going on and those patients need further investigation.

If from our history taking, and examination, and blood tests, we suspect the patient may have ulcerative colitis, our role is to refer them to see a gastroenterologist. The gastroenterologist will then take on the further investigations.

The patient will be seen in clinic, they will be examined again, have a rectal examination, probably have a sigmoidoscopy if there is bloody diarrhoea present. And once they have the sigmoidoscopy and the histological diagnosis made, then further investigations might occur.

NICE is quite clear that all patients should have a colonoscopy after diagnosis to actually explore the full length of their bowel.

When assessing a patient who may have ulcerative colitis, one needs to think about red flags. One needs to think about the acutely unwell patient, so patients who may actually need admission because they are at risk of sepsis and acute kidney injury.

The Truelove and Witts criteria outlined in the NICE guidance gives a very standardised way of assessing patients who may need further treatment and assessment.

One must also be aware of patients who may have colorectal cancer, and NICE NG12 gives very clear guidance about those patients who should be referred on the 2-week wait pathways.

Patients that present with symptoms that could be ulcerative colitis can also have a range of other conditions as well. So they can overlap with irritable bowel syndrome, with infective gastroenteritis, with infective proctitis, with coeliac disease, and with ovarian cancer, colorectal cancer, and endometriosis can occasionally give the same range of symptoms as well. So it can be tricky for us sometimes diagnosing those patients who present with less clear-cut symptoms.


The management of ulcerative colitis depends upon the extent of the disease, where it is in the bowel, and the severity of the disease as well.

The mainstay treatments are rectal preparations and oral preparations. Patients who have very very distal disease, just affecting the very far end of the bowel, can be treated successfully with suppositories. Patients who have more extensive disease further up may require enemas or liquid preparations.

Sometimes a combination of those two is required because the delivery mechanism with some actually gets it part of the way up the bowel but misses the very end of the bowel as well.

Patients with more extensive disease respond better to oral medications as well, and sometimes a combination of oral and topical therapy is required

Some patients do require steroid medication as well. Again, these can be delivered locally or orally.

Oral steroids are useful for getting the disease under control but the long-term effects of long-term steroid therapy can be harmful with osteoporosis amongst other things. Generally, it is better to avoid long-term steroid therapy unless other options have been explored.

Patients given mesalazine treatment can take a little bit longer to respond to those than those given steroid treatments. Generally, it is a good idea to assess the response to treatment within 2 weeks and if the patient is no better, then to escalate it to the next level.

Clearly if a patient deteriorates during that time then other measures need to be taken, advice needs to be sought from the gastroenterologists or the IBD advice line.

Once a patient's symptoms are controlled, it is important for them to continue on long-term maintenance therapy of their medication, as this does reduce the chance of recurrence and also reduces the chance of colorectal cancer developing in later life.

Some patients with acute severe ulcerative colitis require surgery, particularly patients who present with very severe symptoms who don't respond to initial treatment.

NICE provides guidance for hospital practitioners to assess those patients. There are clear criteria in there for when to get the surgeons involved to make that joint decision about surgical options.

With ulcerative colitis, it is important that the entire team works together as well, and by the entire team I don't just mean the hospital team with the gastroenterologists, the dietitians, and psychologists, I actually mean involving primary care within it as well.

Liaison between primary and secondary care is key. Patients come to see us for a whole host of different reasons, and we need to know what is going on in secondary care. And likewise, secondary care needs to know what we're doing in primary care as well.

They need to know how many courses of steroids we have prescribed, any new diagnosis that the patient may have that might affect their UC, and also generally what else is going on in patients' lives. The more information we share between the two sides, the better.

Discharge From Secondary Care

Once a patient is discharged from secondary care back to the care of the GP, it is important for us to actually make some baseline observations to make sure the patient's weight is stable, that they are taking their medication, because compliance is really important, and also think about the other aspects of their lives, what's going on with their family, with their work, and also to think about bone health to make sure they are having their regular screening, but there is no set guidance about what GPs should do once a patient has been discharged.

Ulcerative colitis can affect patients in quite personal ways, in ways that they might not be willing to talk to us, let alone their employers, about. It is important for us to think about those sorts of things and ask them and say, "Are there any adaptations that you might need to your work pattern?" So for example, to work near a toilet or have a change in work pattern because of fatigue. Working from home might be appropriate as well.

Because patients with UC are often diagnosed at the point of their lives where fertility and contraception may be issues for them, they can be worried about this. There is no evidence that patients who have well-controlled disease are at a greater risk of adverse pregnancy outcomes than others are.

If a GP hears that a patient is planning to get pregnant, and they have ulcerative colitis, it is important that the pregnancy is planned. Lots of the medications that patients take for ulcerative colitis are safe to take in pregnancy, with the notable exception of methotrexate.

The NICE guidance for ulcerative colitis provides GPs with a tool to help them diagnose, manage and think about the wider implications of the disease on their patients. I hope people find this video useful. I also hope that it demonstrates that NICE guidance is relevant to primary care, that we shouldn't be afraid of it, and it is not a disease that is just purely managed in secondary care.



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