When Holly Newby came by after emergency surgery to remove her appendix, she looked forward to a future without excruciating pain. The 21-year-old from Leeds underwent surgery after being rushed to hospital with crippling pain on her right side.
After years of persistent stomach cramps and countless tests that failed to reveal the true cause, it 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 officer, was stunned. “It was bitterly disappointing, especially to think that I had undergone the surgery for nothing,” she says. “And 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 was finally diagnosed with irritable bowel syndrome (IBS), a condition that affects one in five Britons.
Due to the delay, Holly lost much of her teenage years and missed socializing as her condition kept her 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. It often 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.’
Fresh start: Holly Newby looks forward to a life without pain after five years of crippling IBS
Now there is a great drive to accelerate diagnosis and get patients to effective treatment much faster. New guidelines from the British Society of Gastroenterology aim to shorten the time it takes to recognize IBS from months, and sometimes, as in Holly’s case, even years, to a matter of weeks. It urges primary care physicians to consider the condition when they see common symptoms such as diarrhea, constipation, cramping, and bloating.
Currently, primary care physicians faced with these symptoms must first rule out a list of serious illnesses, including colon cancer, celiac disease, and inflammatory bowel disease. Even then, patients often get endless exploratory internal exams – when it’s IBS all along.
“It’s mostly an elimination process,” said Dr Kevin Barrett, a general practitioner in Watford and president of the Primary Care Society for Gastroenterology. ‘Some patients last for years before going to the GP.’
The new guideline still calls for cancer checkups, but it pushes IBS onto the list of suspected conditions and recommends that treatments begin much earlier.
These include antispasmodic medications to reduce cramps, pills to fight diarrhea, and sticking to a low-FODMAP diet — a regimen that eliminates foods that can cause bloating. But if patients don’t respond to this, several new drugs are available from NHS gastroenterologists, guidance says. These include linaclotide, a daily tablet that has changed Holly’s life since she was put on it by an NHS consultant earlier this year.
According to a recent study of 2,000 patients, patients wait an average of six and a half years for a diagnosis.
GPs aren’t allowed to start patients on the drug — it has to be done by a specialist — but once it’s up and running, they can authorize repeat prescriptions. Holly says, “When I was 16, I got really bad stomach pains and had to sit in a warm bath to ease the pain. My problem has always been chronic constipation.
“I had a really hard time going to the toilet – I was in such pain it felt like a knife was being stabbed into me.”
At one point, she was referred to a gynecologist because her periods were irregular. She underwent an internal exam to check for endometriosis — a painful condition in which tissue that normally grows in the uterus spreads to other organs. But that too remained empty and doctors said there was nothing more they could do. A private clinic then recommended CT scans and a colonoscopy, which involves passing a small camera into the gut, 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 given linaclotide. She says: ‘The drug has made a big difference in my life. It means I can work a lot more. I can go to restaurants and eat pretty much anything I want. And I can go to the gym, which I rarely could because I was in so much discomfort.’
New guidelines from the British Society of Gastroenterology aim to shorten the time it takes to recognize IBS from months, and sometimes years, to a matter of weeks (file photo)
What is the difference…
…between aerobic and anaerobic training?
Aerobic exercise requires an increased supply of oxygen, so the body takes in more by speeding up breathing and heart rate. The increase in oxygen consumption benefits many bodily functions and keeps the cardiovascular system strong and healthy. Examples of aerobic exercise include jogging, cycling, and swimming.
Anaerobic training consumes energy without the need for excess oxygen. Most forms of anaerobic exercise will build muscle strength and mass.
Examples include lifting weights, push-ups and doing high-intensity exercises for a short time, such as sprinting.
Experts recommend doing a combination of both for a combination of benefits.
The only downside for Holly came when she called her GP to request a repeat prescription, and the surgery said they’d never heard of the drug – although it’s been available in the UK since 2013.
So why have many GPs never heard of it? ‘Sometimes with top-notch medicines, GPs are just not that familiar with them,’ said Dr Alex Ford, a professor of gastroenterology at the University of Leeds and one of the lead authors of the new BSG guidelines.
He says other drugs that can help are antidepressants called tricyclics. Low doses of the tablets can have major benefits in IBS, as the drugs act on receptors in the gut that dampen the brain’s response to stress — as well as ease gut problems.
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 reducing the time it takes to diagnose the condition.
According to the IBS Network, there is an urgent need to improve services to cope with the impact of the Covid-19 pandemic.
Alison Reid says: ‘I’ve worked 12 to 14-hour days to handle the sheer volume of calls to our helpline from people with flare-ups caused by the stress of the pandemic and who have no access to medical help. Some are suicidal. When they get out of the lockdown, they panic even more about how they will cope with returning to work and normal life.”
Many of the UK’s 12 million patients are also still plagued by the stigma surrounding the condition, Reid says. “One woman I spoke to with IBS didn’t even tell her husband she had it. So she left home for work early in the morning and rushed to the toilet at the supermarket instead of at home. When she came out of the bathroom one day, her husband was waiting for her – he had followed her because he was convinced she was having an affair.’
Meanwhile, Holly looks forward to a better life.
She says: ‘The GPs kept pushing me away, so five years later my life is finally getting going.’