The gut health symptoms you should never ignore

In the years following the birth of her second daughter in May 2002, Alicia Cropley was periodically poleaxed with crippling abdominal pain that left her lying in bed for hours at a time, immobile and in agony.

Her symptoms – which started during the pregnancy and included blood in her poo and severe bloating – grew more severe over time. “I assumed it was to do with the pregnancy at first and then the fall-out from the birth but the symptoms didn’t improve,” says Cropley, 60, a retired museum curator from Putney, south London.

A little embarrassed – “because it was to do with poo” – she put off going to the doctor for three months, until she could no longer bear it.

At the surgery, the GP started the diagnostic process, ordering various tests including an endoscopy and colonoscopy while referring Cropley to a specialist; a process which eventually resulted in a diagnosis of Crohn’s disease – a chronic swelling of the intestines – almost a year after she experienced her first symptoms.

This delay in diagnosis, Cropley believes, is likely to have led to a faster progression of the disease and her requiring a major operation five years later, in which two sections of her bowel were removed and a further two sections widened.

“The surgery, as well as being major and taking a while to recover from, left scar tissue that led to complications which I’m experiencing now, years later,” she says. “If I’d gone to the GP earlier and the process had been faster, would I have needed that operation? Possibly not.”

Cropley’s view is supported in a new study which reported that patients who wait longest to be diagnosed with inflammatory bowel disease (including Crohn’s disease and ulcerative colitis) double their risk of adverse clinical outcomes such as scarring of the bowel, gut complications and bowel surgery.

The study, led by researchers from St George’s, University of London, Imperial College London, and University College London reviewed 101 studies representing over 100,000 people with Crohn’s disease and ulcerative colitis and discovered that the median time from reporting symptoms to getting a diagnosis was eight months for Crohn’s disease and four months for ulcerative colitis.

But those in the quarter of the study population that had to wait seven months for a diagnosis of ulcerative colitis and 15 months for Crohn’s disease were between two and four times more likely to need bowel surgery.

“This study highlights the need for strategies that achieve earlier diagnosis of inflammatory bowel disease to enable more timely treatment, improved disease outcomes and quality of life,” says Richard Pollok, Professor of Practice in Gastroenterology and Gastrointestinal Infection at St George’s, senior author on the paper. 

“Usually, patients need to consult with their GP a couple of times to realise it’s chronic and then once you add on referral time to a specialist, waiting time and then time to review the tests, the disease has been rumbling away for a while and progressed. And delay, we now know, means an increased risk of need for surgery.”

A further barrier to a quick diagnosis is patient embarrassment about the symptoms and their lack of awareness.

“Rectal bleeding or bloody diarrhoea needs to be paid attention to and not ignored, and the same goes for any new onset tummy pain, anaemia, weight loss or fatigue,” adds Prof Pollok. “People need to understand that IBD is very common – one in 200 people have it – and pain after eating, particularly after high-fibre foods, can be a warning sign.”

GPs too, can lack confidence in diagnosing inflammatory bowel disease, claims Prof Pollok, and often mistake it for irritable bowel syndrome (IBS), which affects 10 per cent of the population.

“People who are labelled with IBS often later turn out to have Crohn’s,” says Prof Pollok. 

Like IBS, the cause of Crohn's is poorly understood, though several factors are thought to be triggers including genes, a problem with the immune system attacking the gut tissue, a previous stomach bug or an abnormal balance of gut bacteria, as was suggested by a study last week.

The key to a more accurate diagnosis is a special stool test, called faecal calprotectin, but it’s not currently available at all GP surgeries across the UK.

“This can detect gut inflammation and allow GPs to detect possible cases of inflammatory bowel disease earlier and help distinguish from other conditions like irritable bowel syndrome and haemorrhoids,” he says. “Unfortunately, GPs do not have access to this test in all parts of the UK but this needs to happen.”

If your GP isn’t able to carry out the test, the assessment is offered at many private clinics across the UK at a cost of around £150.  

Crohn’s and Colitis UK are currently running a campaign about timely diagnosis and have set up an online symptom tracker to aid diagnosis.

“We launched our Early Diagnosis campaign because it’s taking too long for people with Crohn’s and colitis to get diagnosed – in the UK more than a quarter are waiting over a year from first symptoms to diagnosis,” says Sarah Sleet, CEO at Crohn’s & Colitis UK. “This study shines a light on the terrible impact of slow diagnosis for the long-term health of people with colitis and Crohn’s disease.  

The earlier we diagnose, the earlier we can treat and the better people do, so we urge everyone to see their GP as soon as symptoms appear. Our online symptom checker directs people to reliable health advice and can also send a letter for your GP to make talking through symptoms easier, helping to cut through the taboos which have kept people suffering in silence.”

Twenty years on, Cropley’s Crohn’s disease is largely kept under control with medication, but a recent MRI scan revealed she had four strictures – narrowing in her intestines – that make eating and digestion difficult and painful and she’s aware she may have to have another operation in the near future.

“I was told the operation I had would last about 10 years so I’m very much living on borrowed time,” she says.  “Before every single meal, even now, I still have to think about whether it’s going to be OK. But this is a life-long disease and it’s just important that everyone is diagnosed and treated as quickly as possible, and awareness is raised.”