What is Crohn's disease? What are the symptoms?
Crohn’s disease is an inflammatory bowel disease (IBD) that affects well over 100,000 people in the UK. It causes the intestines (gut) to become inflamed (swollen and sore) and ulcers develop on the gut lining. Symptoms can vary from person to person and can change over time.
These can include abdominal pain that doesn’t get better, recurs quickly or gets worse after you’ve been to the loo to open your bowels, diarrhoea (sometimes mixed with blood), waking up at night to open your bowels, losing weight or being unable to gain weight, feeling generally unwell for long periods, tiredness and fatigue, anaemia, swollen joints, mouth ulcers and sometimes abscesses and ‘leaking’ or discharge around the back passage.
Sometimes symptoms are mild and barely noticeable and can even sometimes get temporarily better by themselves. Many people ignore their symptoms or try to deal with things on their own, perhaps by trying to change what they eat or taking painkillers.
Many other conditions can cause the same sorts of symptoms and if mild they can go unrecognised for months. In fact, research shows that over one-third of patients waited more than one year from the time they first went to see their doctor – and one-third visited A&E at least three times – before they were diagnosed. Overcoming this delay (and inappropriate visits to A&E) is a real challenge for specialists dealing with Crohn’s as we know that an early diagnosis by a specialist who can start the most appropriate treatment leads to a better outlook and improves quality of life right from the start.
How is Crohn's disease normally diagnosed?
If you have these symptoms, blood tests and a simple test called faecal calprotectin can determine whether you might have Crohn’s or not. Calprotectin is tested by taking a small stool sample when you are at home and can be tested before you come to see the specialist. It is a fantastic screening test for IBD and has been recommended by the National Institute for Health and Care Excellence (NICE).
If the test is normal, you might still have Crohn’s, but it is much less likely and a specialist consultation will help determine what your symptoms are due to. If the test is positive, you will generally need a colonoscopy to investigate further. Colonoscopy is often seen as an unpleasant, painful procedure but it really doesn’t have to be. Specialists in IBD often have the expertise and access to the latest technology and equipment to make colonoscopy as comfortable as possible.
What is the role of genetics and lifestyle factors?
Although we don’t know exactly what causes Crohn’s, there has been a huge research effort over the past few decades and this continues to gather momentum. There is not one single cause, but many different triggers or risk factors that might be responsible in different situations and different people.
Genes are important in determining who might get Crohn’s, but they are definitely not the only factor: although it is true that Crohn’s can run in families, more often this is not the case and having Crohn’s doesn’t necessarily mean you might pass it on to your children (the risk of this is actually lower than you might think). IBD specialists and scientists are working worldwide to work out exactly how genetics affects Crohn’s and whether we can diagnose and treat people better by knowing what genes they have inherited.
We also know that the disease might be triggered by infection, or even by the bacteria that normally live in our gut. The immune system might react, or over-react to these bacteria and – in trying to control an infection for instance – become uncontrolled and damage the gut lining causing ulcers. This allows more bacteria to get into the gut walls and aggravate the immune system further – a vicious circle that needs to be stopped.
One really interesting observation is that Crohn’s is much more common, and often more severe, in people who smoke. If you have Crohn’s and continue to smoke it will make the disease much worse and can even reduce the effectiveness of medication. Specialists will always advise you to give up.
What treatment options are available for Crohn's disease?
Treatments for Crohn’s disease can therefore vary considerably from person to person. Sometimes, in very mild cases (or even in conjunction with other treatments), the disease can be managed with specialist dietary therapy, by taking probiotics (strong preparations of friendly bacteria) or by using anti-inflammatory medication.
Vitamin and mineral supplements, sometimes given by injection, can help as well. Stronger anti-inflammatory medication, like steroids, can be used but specialists in IBD generally try to avoid this unless absolutely necessary as steroids come with a range of side effects.
If Crohn’s is severe or recurrent, medications to suppress the over-active immune system are required. New treatments are being introduced all the time, and IBD specialists sometimes have access to very new ones that aren’t widely available. In some cases, surgery might be required or even be the best treatment depending on how Crohn’s has affected the gut.
How do you reduce the chance of developing Crohn's disease?
If you have Crohn’s it is important to know that there are specialists out there who can help and get you seen by the right people (surgeons, dietitians and psychologists for instance) as soon as possible.
Crohn’s is a lifelong condition, but with help you can achieve long periods without symptoms (remission). There are also organisations like Crohn’s & Colitis UK and the children’s charity CICRA who offer support and information that you can trust.