Why must IBS patients suffer for years? New guidance aims to slash the time it takes to spot the painful condition to a matter of weeks
- It took five years after she first felt unwell before Holly Newby got IBS diagnosis
- Delay meant she lost a chunk of her teenage years, missing out on socialising
- And she’s not alone, says Alison Reid, chief executive of the charity IBS Network
- Now there is a major drive to get patients effective treatment much sooner
When Holly Newby came round after emergency surgery to remove her appendix, she was looking forward to a future free of excruciating pain. The 21-year-old from Leeds was operated on after dashing to hospital with crippling soreness on her right side.
After years of persistent abdominal cramping and numerous tests that failed to reveal the true cause, it finally seemed the puzzle had been solved. But when doctors later revealed that the appendix they removed was, in fact, perfectly healthy, Holly, an NHS clinical support worker, was stunned. ‘It was bitterly disappointing, especially to think I had been through the surgery for nothing,’ she says. ‘And pretty soon the pain was back – and as bad as ever.’
In fact, it took five years after she first felt unwell as a 16-year-old before Holly finally got a diagnosis of irritable bowel syndrome (IBS), a condition that affects one in five Britons.
The delay meant Holly lost a huge chunk of her teenage years, missing out on socialising as her condition kept her at stuck at home.
And she’s not alone, says Alison Reid, chief executive of the charity IBS Network. ‘We hear stories like this all the time. Often it takes several years because IBS is a complex condition and the symptoms ebb and flow. Some people who call our helpline are positively suicidal because they feel so unwell.’
New start: Holly Newby is looking forward to a life without pain after five years of crippling IBS
Now there is a major drive to speed up diagnosis and get patients effective treatment much sooner. New guidance from the British Society of Gastroenterology aims to slash the time it takes to spot IBS from months, and sometimes, as in Holly’s case, even years, to a matter of weeks. It urges GPs to consider the condition whenever they see common symptoms such as diarrhoea, constipation, cramping and bloating.
Currently, family doctors faced with these symptoms have to first rule out a list of serious illnesses, including bowel cancer, coeliac disease and inflammatory bowel disease. Even then, patients often end up having endless exploratory internal examinations – when it is IBS all along.
‘It is mainly a process of elimination,’ says Dr Kevin Barrett, a GP in Watford and chair of the Primary Care Society for Gastroenterology. ‘Some patients put up with it for years before they see their GP.’
The new guidance still calls for cancer checks to be done but it pushes IBS up the list of suspect conditions and recommends treatments start much sooner.
These include anti-spasmodic drugs to reduce cramping, pills to combat diarrhoea and sticking to a low-FODMAP diet – a regime that cuts out foods that might trigger bloating. But if patients fail to respond to these, several new drugs are available from NHS gastroenterologists, the guidance says. These include linaclotide, a daily tablet that has transformed Holly’s life since she was put on it by an NHS consultant earlier this year.
Sufferers wait an average of six and a half years for a diagnosis, according to a recent survey of 2,000 patients.
GPs are not allowed to start patients on the drug – it has to be done by a specialist – but once it is under way, they can authorise repeat prescriptions. Holly says: ‘When I was 16, I started getting really bad abdominal pain and would have to sit in a hot bath to try to ease the pain. My problem has always been chronic constipation.
‘I really struggled to go to the toilet – I had a pain so intense it felt like a knife being stuck in me.’
At one point, she was referred to a gynaecologist as her periods were irregular. She underwent an internal exam to check for endometriosis – an agonising condition in which tissue that normally grows inside the womb spreads to other organs. But it too drew a blank and doctors said there was nothing more they could do. A private clinic then recommended CT scans and a colonoscopy, where a tiny camera is passed up into the bowel, but both were clear. Attempts to control her symptoms with the low-FODMAP diet also failed.
It was only after Holly was finally referred to an NHS specialist earlier this year that she was put on linaclotide. She says: ‘The drug has made a big difference to my life. It means I can work a lot more. I can go to restaurants and eat pretty much whatever I want. And I can go the gym, which I was rarely able to do because I was in so much discomfort.’
New guidance from the British Society of Gastroenterology aims to slash the time it takes to spot IBS from months, and sometimes even years, to a matter of weeks (file photo)
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The only downside for Holly came when she called her GP to request a repeat prescription, and the surgery said they had never heard of the drug – even though it has been available in the UK since 2013.
So why have many GPs never heard of it? ‘Sometimes with first-in-class drugs GPs are just not that familiar with them,’ says Dr Alex Ford, a professor of gastroenterology at the University of Leeds and one of the main authors of the new BSG guidelines.
He says other medicines that can help include antidepressants called tricyclics. Low doses of the tablets can have major benefits in IBS because the drugs act on receptors in the gut that dampen the brain’s reaction to stress – soothing gut problems too.
Other promising developments are in the pipeline. A biotech company called Nidor Diagnostics Ltd is developing a medical device that tests stool samples for signs of IBS. The gadget checks for volatile organic compounds, potentially slashing the time it takes to diagnose the condition.
According to the IBS Network, there is an urgent need for services to improve to deal with the fallout from the Covid-19 pandemic.
Alison Reid says: ‘I have been working 12- to 14-hour days to help deal with the sheer number of calls to our helpline from people having flare-ups caused by the stress of the pandemic and unable to access medical help. Some are suicidal. Coming out of lockdown, they are panicking even more about how they will cope with returning to work and normal life.’
Many of the UK’s 12 million sufferers are also still plagued by the stigma over the condition, says Reid. ‘One woman I spoke to with IBS had not even told her husband she had it. So she used to leave home early for work in the morning and dash to use the toilet at the supermarket, rather than at the house. Then one day, when she came out of the loo, her husband was waiting for her – he had followed her because he was convinced she was having an affair.’
Meanwhile, Holly is looking forward to a better life.
She says: ‘GPs kept pushing me away so, five years later, my life is at last getting started.’
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