What GPs Need to Know About Crohn's Disease NICE Guidance

Dr Kevin Barrett


July 06, 2020

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

Crohn's disease can be really important for general practitioners because it can be much harder to diagnose than other inflammatory bowel diseases. Presentation can overlap with so many other illnesses. The classic symptoms of diarrhoea and weight loss are not always there in every single case.

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

This video aims to bring the National Institute for Health and Care Excellence (NICE) guidance to life for us as GPs so we can improve the diagnostic pathway for patients and also the care that we give them.

Crohn's disease is a version of inflammatory bowel disease that affects at least 115,000 patients in the UK, provides patchy inflammation throughout the gut anywhere from the mouth down to the anus. It can affect all layers of the gut wall so fissures, fistulas, and strictures can be common with it.

But the prevalence in westernised countries seems to be levelling off, whereas those in countries that are becoming industrialised seems to still be rising and it seems to be something of a combination of factors - environmental factors, maybe lifestyle, maybe pollution - that seem to be increasing the prevalence amongst those groups.

Crohn's disease can affect anybody of any age. There are children under 1 that have been diagnosed and adults over 100 that have been diagnosed. Around about half of patients are diagnosed in their teens, 20s, and their 30s and that is clearly a difficult time of life for patients because again they are starting careers, still in education, starting work, starting families.

Malabsorption, Vitamin Deficiencies

Crohn's disease, if it affects the small bowel, then it can affect absorption, so lots of nutrients, calcium, vitamin D, iron are absorbed in the small bowel. So malabsorption, vitamin deficiencies, osteoporosis, they can be much more common in Crohn's disease than perhaps in ulcerative colitis.

Patients can often present feeling fatigued. If they do, one needs to think about checking vitamin D levels as well as iron levels in that group of patients.

The most common sites with Crohn's disease is actually the bowel, the large intestine. The small intestine can be affected as well, and when one does a colonoscopy it is important to try and get into the terminal ileum to take biopsies from there because that gives an indication if the small bowel is involved or not.


If a patient comes to see us and we are lucky, they will present with very classic symptoms of a change in bowel habit, with diarrhoea, maybe some abdominal pain in Crohn's disease, weight loss and fatigue. Those symptoms always set the alarm bells ringing, both for colorectal cancer, if they are in that risk group, or for Crohn's disease, perhaps if they are a little bit younger. But either way, those patients need to be investigated.

If we are unlucky, then those classic symptoms aren't always there. Younger people can be quite difficult to diagnose as well because we know that in children around 44% of them don't present with a change in bowel habit. They may present with failure to thrive, abdominal pain, fatigue, those sorts of symptoms, and those overlap with other conditions, so anorexia, stress, coeliac disease, a whole range of other things that can lead us off down a different diagnostic route.

The symptoms of Crohn's disease can overlap with those of colorectal cancer. It is always an important thing to think about as well.

NICE NG12 on suspected cancer: recognition and referral is very clear about the groups we should investigate and refer on the 2-week wait pathways for colorectal cancer as well.

However, patients that have got established inflammatory bowel disease, both Crohn's disease and ulcerative colitis, are both at greater risk of colorectal cancer.

It is always important to think about those symptoms in patients who have got established disease who come to us with perhaps a different set of symptoms to the ones they've had before. Then the ones who we think, actually is there something else going on? Do I need to refer them? Do I need to think about the colorectal cancer risk? Have they had their screening colonoscopy done? Are there any new red flag symptoms present? If that is the case, then they need to be referred back to see the gastroenterology team.

If a patient comes to us and they have the very typical symptoms of diarrhoea, change in bowel habit, weight loss, then it can be much more straightforward to diagnose, to think about, inflammatory bowel disease. However, not all patients with Crohn's disease in particular do present with those symptoms. They can present with constipation, with fatigue, weight loss, anaemia, abdominal pain, a range of other symptoms that overlap with other conditions as well. Those we need to think about. Could this be inflammatory bowel disease? Could it be irritable bowel syndrome? Could it be coeliac disease, ovarian cancer, endometriosis, or colorectal cancer?


There is no cure for Crohn's disease. Treatment goals have to be about relieving symptoms, improving the quality of life for patients, and trying to improve mucosal healing as best as one can. But the key is to keep the symptoms under control so that the patients can live an active and fulfilled life.

The treatments used for Crohn's disease are generally immune suppressants, whether they are anti-TNF factors, disease-modifying drugs, or steroids. The side effects of medications can be quite toxic. The aims of treatment should be to minimise those toxic side effects whilst improving the quality of life for patients as best we can.

This can be achieved in a number of other ways as well, which we as GPs have a role in. Smoking cessation, improving nutrition, physical activity, and leading a generally healthy lifestyle are all things that we should be encouraging for our patients.

When you see a patient with lower gastrointestinal symptoms, NICE DG11 provides a very clear-cut pathway for investigation of those. We do make sure that patients don't have any red flag symptoms that require a 2-week wait pathway referral, but for those patients who don't meet these criteria, who have ongoing symptoms for 4-6 weeks as a minimum, there is a very clear description of the investigations that we should carry out.

Obviously taking a very good history is important with this, and listening to the patient's ideas, concerns, and expectations. Examining their abdomen, looking for an abdominal mass is a key part of that as well. Rectal examination is recommended, but not always necessary in every single case. Again, it depends upon the relationship one has with the patient and the set of symptoms they have.

Blood tests are the next step in the investigation - so, to look for anaemia, raised inflammatory markers, to exclude coeliac disease - they're the mainstay of investigating.

If those results come back as being abnormal, then it is often quite clear there’s something abnormal  going on, and those patients usually need referral onwards for further treatment. However, some patients with Crohn's disease in particular, can have normal inflammatory markers, normal white blood count, and a negative coeliac test.

For those patients, the next step is to do a faecal calprotectin test. So NICE DG11 also talks about testing faecal calprotectin. Calprotectin is a protein which is released by inflammation. So raised levels in the stool can indicate there is inflammation going on inside the gut. It is not raised in every patient with inflammatory bowel disease, and you can get false positives, particularly in patients who are using an anti-inflammatory or may have an infective cause.

But NICE DG11 provides a clear-cut pathway with clear cut-off points for which a referral is necessary, or when reassurance can be given that there is unlikely to be a structural problem going on.

A faecal calprotectin result of greater than 250 usually indicates that a patient needs to be referred to see a gastroenterologist, and the IBD standards do state that every patient with suspected IBD should be seen by a gastroenterologist within 4 weeks of referral. However, we know that that does not always happen because of limited resources within the IBD teams.

For patients with a faecal calprotectin of between 100 and 250, those patients probably need a repeat test once they've stopped their anti-inflammatories, as non-steroidals can put up the calprotectin level. The general consensus is that those patients have a repeat test 4 weeks later.

Patients with a result less than 100 are unlikely to have any inflammatory pathology.

In order to make a diagnosis of Crohn's disease, a tissue sample is needed to get a histological diagnosis. The most common way this is done is through colonoscopy. Almost every patient who is physically fit enough will have a colonoscopy done. Some patients are not fit enough to have that done and then a CT or MRI scan may be used instead.

Some patients who have small bowel disease may end up with a capsule endoscopy. However, this will only provide pictures of the bowel and does not provide a tissue diagnosis.

Because Crohn's disease can be a multi-system disease, so it does not just affect the bowel, it can affect the skin, the eyes, the liver, then the management is a multi-disciplinary management: gastroenterologists, surgeons, (because a lot of patients with Crohn's disease do end up having surgery at some point), inflammatory bowel disease nurses, psychologists, dietitians, and specialist pharmacists.

More than half of patients with Crohn's disease will end up having surgery at some point in their lives to remove diseased areas of the bowel. It is important that surgeons are involved at an early stage with patients who may be at greater risk of having surgery.

Patient Management

Our role as GPs when patients have been given a diagnosis is to support them in the wider aspects of there health. Smoking cessation is really important for patients with Crohn's disease. It is also important to make sure that patients keep up their nutrition because malabsorption is common in Crohn's disease.

Because patients with Crohn's disease are typically young and they have been diagnosed with a relapsing, remitting chronic condition that has no cure, relapses again, triggers for relapses, sometimes for some patients the symptoms can be triggered by all sorts of different things. Other patients, the disease process just keeps going along by itself and there is no known trigger for their relapses.

Our role as a GP is to support them throughout a whole range of different aspects as well. We can provide advice on contraception, on fertility, travel, nutrition. Patients are often more comfortable talking to us about those more intimate aspects of their lives, so for example, sex life can be important for patients.

There is a lot of overlap in the treatment of Crohn's disease with rheumatic diseases. The drugs used are quite similar. Disease-modifying drugs like azathioprine, occasionally methotrexate, are used quite commonly for patients with Crohn's disease. Biologics medications are also used widely and are becoming much more widespread.

Crohn's disease is an illness with a period of relapse and remission and those periods of relapse are known as flares.

If a patient comes to us with symptoms of a flare, it is important to establish that there is an inflammatory process going on as well. That can be done in a variety of ways. Most simply with a full blood count and an ESR or CRP. In some areas, calprotectin testing is widely available to GPs and that can be a useful test to see if a patient is actually in a flare or not.

The mainstay of treatments for flares are steroids but it is important for us to give steroids appropriately and not to overuse steroids because of the risk of osteoporosis, the increased risk of infection, and of potential problems with surgery, if a patient ends up having surgery during that episode of flare.

So the NICE guidance for Crohn's disease is an important document to help us as GPs recognise, treat, manage and support our patients with inflammatory bowel disease. Crohn's disease is a condition that can affect all aspects of our patient’s life and the GP has a key role in supporting our patients.

So thank you for listening. I hope people found it a useful and informative video.


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