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Hard to stomach

Cases of Crohn’s disease in the UK are significantly higher than previously estimated.

Crohn’s disease, a chronic inflammatory bowel disease, can have a huge impact on people’s lives. The condition can be diagnosed at any age, but most commonly before the age of 30, and affects men and women equally. It may initially be confused with irritable bowel syndrome (IBS), which is why it’s so important that ongoing or severe digestive symptoms are always checked out by a GP. 

Dr Rachel Ainley, head of research and evidence at Crohn’s & Colitis UK, says that community pharmacies have a vital role to play in identifying the symptoms. “This can make the difference between people getting treatment early that sets them on a path to remission, or seeing their health deteriorate into severe illness,” she says. 

“We are about to launch a podcast for community pharmacists to raise awareness of these often-invisible conditions, helping them spot the symptoms to enable earlier diagnosis, and provide better support for those living with them.”

Cases on the rise

New results from a study commissioned by Crohn’s & Colitis UK have shown that the number of people living with Crohn’s disease or ulcerative colitis (as well as unclassified IBD) in the UK has been vastly underestimated. The research, which was carried out at the University of Nottingham and funded by Crohn’s & Colitis UK and Coeliac UK, shows that there are over half a million people (one in every 123) in the country living with IBD, nearly double that of the 300,000 previously estimated. This rises to one in every 67 people over the age of 70. 

“Outdated figures mean the scale of the issue has been overlooked for too long,” says Sarah Sleet, CEO of Crohn’s & Colitis UK. “Lifetime costs for the NHS for treating these conditions are comparable to heart disease and cancer. 

“The conditions can have a profound impact on a person’s life and patients need expert care from doctors, specialist nurses, dietitians, pharmacists and psychologists. It’s crucial that the NHS recognises the scale of the growing numbers with Crohn’s and colitis and does more to prevent lives being blighted for decades by these debilitating illnesses.”

What is Crohn’s disease?

In Crohn’s disease, the immune system attacks the digestive system which is called an autoimmune reaction. This is most common in the small bowel and colon, but can occur anywhere in the digestive system from the mouth to the anus. Areas of inflammation are often patchy, with sections of healthy gut between them. The condition is usually diagnosed with an endoscopy and other tests.

The cause of Crohn’s disease is still unknown, but it’s thought to be a mixture of genetics, bacteria levels in the gut and environment factors. Crohn’s tends to run in families; if one parent has Crohn’s, the risk of their child developing Crohn’s or colitis is generally thought to be between five and 10 per cent. The risk of Crohn’s disease may be higher in smokers and after a gastroenteritis infection.

People with Crohn’s have fewer varieties of helpful bacteria in their gut than people without Crohn’s, and some helpful bacteria are missing completely. New evidence suggests that other bacteria in the gut may produce proteins that cause inflammation and lead to the development of Crohn’s.

“The risk of Crohn’s disease may be higher in smokers”

Common symptoms

Everyone experiences Crohn’s differently, and the symptoms usually flare up and down, but the condition most commonly causes severe abdominal pain, diarrhoea (often urgent), weight loss and fatigue. Some people also get a fever during a flare up and feel generally unwell, along with weight loss and little appetite. 

A flare up can last from a few days up to several months and feature different symptoms each time. Some people get regular flare ups, some people get hardly any, and others have continuous symptoms with no break at all. Around six in 100 people with Crohn’s disease get inflammation in other parts of their body too, causing joint pain and swelling, swollen eyes, mouth ulcers, nausea and skin rashes. 

Management approaches for Crohn's can often involve a combination of medication and surgery.

Management approach

Crohn’s is a lifelong condition and can’t be cured. Management approaches usually involve medicines, surgery or a combination of both to stop the inflammation from getting worse, help to control the symptoms and reduce the risk of complications. The choice of treatment depends on which part of the digestive system is affected, how active and severe the inflammation is, and whether it occurs in other parts of the body. 

Corticosteroids or biologic immunosuppressants may be prescribed during a flare up to reduce inflammation, but can have significant side effects. “The medications for Crohn’s disease are immunosuppressive, so patients are more predisposed to common infections such as respiratory viruses,” says Dr Luke Pratside, lead GP at Numan and NHS GP with the Hurley Group. “Methotrexate can cause liver damage and abnormalities in blood cell production, so it is important that anyone on methotrexate has regular blood tests, usually every three months, so that any sign of these side effects can be spotted early and doses reduced or methotrexate stopped altogether.”

Antidiarrhoeals and laxatives may be used to ease digestive symptoms, while paracetamol may help with abdominal pain. Antispasmodics such as hyoscine butylbromide and mebeverine may reduce painful cramps and spasms by relaxing muscles in the gut. People with Crohn’s shouldn’t take non-steroidal anti-inflammatory medicines (NSAIDs) such as ibuprofen, unless these are prescribed by a doctor, because they may trigger a flare-up. 

There’s no evidence that special foods will help Crohn’s, so a normal nutritious, balanced diet is best. “During a flare up, it’s important that a person stays well hydrated as they will be losing a lot of fluid through the diarrhoea,” says Dr Pratside. “It is important to drink water rather than other drinks that might irritate the bowel, such as caffeinated beverages. Similarly, it’s best to eat plain food rather than spicy or oily food that might exacerbate the diarrhoea.”

If the diarrhoea is severe or ongoing, some people may be prescribed a special liquid diet for six to eight weeks to give their digestive system a chance to rest. Up to 80 per cent of people with Crohn’s need surgery at some point in their lives, to remove severely inflamed or scarred parts of the digestive system. 

Complication risks

Some people with Crohn’s don’t absorb nutrients properly. “They may have difficulties absorbing nutrients from their food because of chronic inflammation or having had part of the bowel surgically removed,” says Dr Pratside. “Therefore, it is important that they are monitored for deficiencies in nutrients such as B12, folate, ferritin and vitamin D, and if necessary, take supplements to replace any deficiency.”

Poor calcium and vitamin D absorption can increase the risk of thinner and weaker bones, leading to osteoporosis. This may also be caused by inflammation in the digestive system or taking corticosteroid medicines for a long time.

Crohn’s disease carries a slightly increased risk of blood clots, heart problems and stroke. It may also increase the risk of bowel cancer in some people. This risk is small but may be higher in people who have had Crohn’s disease affecting most of the large bowel for more than eight to 10 years, or if they have strictures (narrowed parts of the bowel). If they are at an increased risk of bowel cancer, they will be offered regular colonoscopies to check for early warning signs.

“Up to 80 percent of people with Crohn’s need surgery at some point in their lives”

Psychological impact

Crohn’s can have a significant impact on people’s lives – their education, work, leisure activities and social life. According to Crohn’s & Colitis UK, people with IBD are twice as likely to experience mental health problems, and two in five people with Crohn’s or colitis said it prevented them from pursuing an intimate relationship. 

More than one in three people with Crohn’s or colitis identify as disabled, and one in two people with these conditions report having experienced discrimination for using an accessible toilet, with over 60 per cent of these instances including either verbal and/or physical abuse.

Researchers at Kings College London are looking at the role of cognitive behavioural therapy (CBT) in treating anxiety and depression in people with IBD. “Despite how common and debilitating anxiety and depression are among people with Crohn’s and colitis, treatment is rarely routinely offered,” says the study authors, Dr Federica Picariello and Professor Rona Moss-Morris. “Through this project, we hope to begin a transformation, so that mental health support is integrated into other routine treatment for people living with Crohn’s and colitis. Our vision is that 1) depression and anxiety are routinely checked, and 2) treatment options for these are readily available according to individual needs and preferences, including COMPASS – a digital treatment programme with minimal support from a trained health professional, for patients who experience mild to moderate levels of anxiety and/or depression.”

Customers with Crohn’s disease can find out more about their condition through the NHS website, as well as get some support and information from Crohn’s & Colitis UK or call: 0300 222 5700. 

Certain food and drink can trigger symptoms.

Other common digestive concerns

These terms are used to describe upper abdominal pain or discomfort, bloating, a burning sensation in the chest, acid reflux, nausea and/or vomiting. Risk factors include getting older, pregnancy, stress and anxiety, smoking, alcohol and obesity. Simple lifestyle measures may help to ease the symptoms, such as raising the head of the bed, avoiding trigger foods (e.g. coffee, chocolate and fatty foods) and eating smaller meals. Using over-the-counter antacids and alginates may help to ease occasional symptoms, while a proton pump inhibitor (PPI) for 14 days may ease regular symptoms by reducing stomach acid production. If these fail to work, customers should speak to their GP.

Bloating may be due to excessive wind. It’s usually nothing to worry about and may be caused by eating too quickly, gulping a lot of air or fluid while drinking, chewing gum, smoking or wearing loose dentures. Simeticone tablets may help. However, bloating should be checked out if it doesn’t improve, as it could be a sign of underlying lactose intolerance, acid reflux or inflammatory bowel disease (IBD). Persistent bloating and feeling full may be a sign of ovarian cancer.

Everyone’s bowel movements vary, but constipation is defined as bowel movements occurring less often than usual or hard, dry stools that can be painful or difficult to pass. Constipation is more common in women than in men, and in children and older people. It may be a side effect of some medicines, such as opioids, or occur in digestive conditions such as IBD or irritable bowel syndrome (IBS). Increasing fibre in the diet may help to ease constipation, along with drinking more fluid and exercising more regularly. Bulk-forming laxatives can be used as a short-term measure, but these shouldn’t be used regularly without a doctor’s advice. 

Acute diarrhoea (passing loose or watery stools) may be due to gastroenteritis, food poisoning, medicine side effects or even anxiety. It usually gets better after a few days without any treatment. It’s important to prevent dehydration, especially in babies and older people, by drinking plenty of fluids (e.g. water, fruit juices or salty soups) or using oral rehydration therapy products. Eating carbohydrates (e.g. rice, pasta or salty crackers) may help. Pharmacy customers can take loperamide tablets if they want to stop diarrhoea quickly (e.g. before a specific event), but shouldn’t take these regularly or use them at all if they’re passing blood or have any significant abdominal pain. 

IBS can cause flare ups of stomach cramps, bloating, diarrhoea and/or constipation. Anti-spasmodic medicines (e.g. alverine citrate, mebeverine hydrochloride or peppermint oil) may control the pain, while laxatives may help constipation or loperamide tablets may stop diarrhoea. Some people find that probiotic tablets help their IBS, along with dietary and lifestyle changes and psychotherapy or cognitive behavioural therapy (CBT).

Red flag symptoms

Digestive symptoms are very common and aren’t usually anything to worry about. But sometimes they do need further investigations to rule out more-serious illnesses, including inflammatory bowel disease, stomach cancer or bowel cancer. Red flag symptoms include:

  • Bleeding from the anus
  • Pain and/or lumps in the anus
  • New-onset constipation, especially in people over 50
  • Persistent diarrhoea or constipation lasting three weeks or more
  • Unexplained fatigue and/or weight loss
  • Severe or persistent abdominal pain
  • A loss of appetite or feeling full quickly
  • Feeling or being sick
  • Passing dark or bloody poo
  • Excessive burping with chest discomfort (especially on exertion) or swallowing problems
  • Persistent bloating, especially if accompanied by weight loss, abdominal pain or diarrhoea.
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