Crohn’s disease is one of the most common forms of inflammatory bowel disease yet a lack of understanding means it remains an invisible illness, writes Liz Connor
YOU’VE probably heard of Crohn’s diease, but do you really know what it means? For starters, it’s actually pretty common – every 30 minutes in the UK, someone is diagnosed with Crohn’s or ulcerative colitis, the two main forms of inflammatory bowel disease (IBD).
These are lifelong conditions that can have a big impact, but Crohn’s is often described as an ‘invisible illness’, because it’s not always apparent on the outside exactly what’s going on with somebody’s health. In other words, people might not ‘look’ as unwell as they are, which can contribute to lack of understanding and awareness.
People with Crohn’s disease commonly experience phases of intense abdominal pain, exhaustion, bloody diarrhoea, sore, swollen joints and a number of other unpleasant symptoms.
While Crohn’s is a lifelong condition and can be difficult to live with at times, particularly when it comes to unpredictable flare-ups, the good news is that lots can be done to help manage it. And if symptoms are well controlled, you can still live a full life with Crohn’s.
Here, Jaina Shah, a spokesperson from Crohn’s and Colitis UK, explains more…
:: What is Crohn’s disease?
“Crohn’s is one of the two main forms of inflammatory bowel disease and is a lifelong disease of the gut,” says Shah. “It is painful, debilitating and widely misunderstood – and there is no known cure.”
She explains that for people with Crohn’s, the immune system doesn’t function as it’s meant to. “Your body starts attacking itself, causing ulcers and inflammation in the gut. Imagine having a wound that never heals, but only it’s on the inside.”
The condition doesn’t just affect the gut, though. “It can affect almost every part of your body and every aspect of your life – from your digestion to your energy levels and mental health,” adds Shah. “People living with the condition face a lifetime of medication and, in many cases, major surgery.”
While it’s not entirely clear why people develop Crohn’s, research has suggested it’s possible that a virus or bacterium may trigger it. When your immune system tries to fight off the invading microorganism, an abnormal immune response causes the immune system to attack the cells in the digestive tract too.
Studies have also found that Crohn’s is more common in people who have family members with the disease, so genes may play a role in making some people more predisposed to developing it.
:: What are the symptoms?
Crohn’s tends to occur in episodes of flare-ups and periods of remission – although symptoms may be constant if the condition isn’t being treated or well managed. When the disease is active, the NHS says that the main symptoms are diarrhoea – which may come on very suddenly – stomach aches and cramps, and blood in your stools.
While every person is affected differently, fatigue is also a common symptom, along with weight loss (although that isn’t always the case). Some people with Crohn’s disease also experience a high temperature, feeling sick, joint pain, sore eyes, patches of swollen skin (usually on the legs) and mouth ulcers.
:: How is Crohn’s disease diagnosed?
If you find blood in your stools, have diarrhoea for more than a week or experience frequent stomach aches, it’s advised you book in to see your GP to get things checked. Your doctor will try to find out what’s causing your symptoms and may refer you for tests to check for Crohn’s disease.
While you can be diagnosed at any age, Crohn’s and Colitis UK reports that the median average age for Crohn’s diagnosis is 29.5 years, while more than 25 per cent of all new diagnoses are in children aged under 16.
An MRI or CT scan may be required to get a better understanding of what’s going on in your intestines.
During the tests, you may be asked to take a colonoscopy, where a thin, flexible tube with a camera at the end is inserted into your bottom to look for inflammation in your bowel. A specialist may also take a biopsy, where tiny pieces of bowel tissue are removed during a colonoscopy and checked for signs of Crohn’s disease.
:: How is it treated?
If Crohn’s is diagnosed, Shah says that treatment will vary from person to person and can depend on the severity of the condition – although they will often have to take lifelong medication. “The aim of medication is to reduce inflammation in the gut and bring relief from symptoms,” says Shah. “These drugs are often anti-inflammatory, and include steroids, immunosuppressants and biological drugs, taken in injection or infusion form.”
In some cases, surgery may be required, to remove badly damaged sections of the bowel, for example. “Medication doesn’t always work,” says Shah, “which means people with Crohn’s can face surgery. This includes bowel resections, operations that lead to the creation of a stoma and seton procedures.”
Managing Crohn’s disease is about lifestyle measures too, in order to help prevent flare-ups and minimise the impact of symptoms when they occur. This includes managing stress and mental wellbeing and getting plenty of sleep. Counselling can be very helpful too.
There’s no set special diet for adults with Crohn’s disease – but diet and nutrition are important, as people with Crohn’s have an increased risk of nutritional deficiencies due to malabsorption, plus some people find certain foods can trigger symptoms. Children may sometimes need to follow a special liquid diet to help control their symptoms – a GP will advise if this is necessary. A dietitian can help with managing diet and ensuring you’re getting the balance of nutrients you need.
The unpredictable flare-ups of Crohn’s disease can be hard to cope with emotionally and practically, so it may help to discuss your condition with your friends and family if you’re struggling. Your GP can also point you in the direction of counselling and further emotional support.
Finally, make use of charities like Crohn’s and Colitis UK (crohnsandcolitis.org.uk), which has details on its website of local support groups and community events.