Lying on the floor for hours in agony, constantly exhausted and often trapped at home because she needed to rush to the loo at least 20 times a day … This was Caroline Etheridge’s life in her teens and early 20s.
‘I was off work all the time and barely left the house,’ recalls Caroline, now 29. ‘My health was so bad, I had to move back in with my mum so that she could look after me. And the pain was exhausting, so I would sleep for hours.
‘I couldn’t date anyone, and at one point I lost a stone and a half in a month, going from a size 12 to a size 6-8. I couldn’t keep food down and bled from my rectum.’
Caroline, who works in customer services and lives near Penzance, Cornwall, was seven when she started suffering stomach cramps and diarrhoea.
Her parents took her back and forth to her GP in search of a diagnosis. First, it was thought to be a wheat allergy, then irritable bowel syndrome (IBS) — but none of the treatments for these worked.
Lying on the floor for hours in agony, constantly exhausted and often trapped at home because she needed to rush to the loo at least 20 times a day … This was Caroline Etheridge’s life in her teens and early 20s [File photo]
It took almost two decades for her to be diagnosed with microscopic colitis, a form of chronic inflammatory bowel disease (IBD), where the immune system reacts abnormally to an external trigger, leading to inflammation in the lining of the large intestine (colon), causing stomach cramps and watery diarrhoea.
Worryingly, it now seems likely that the severe exacerbation in symptoms which left Caroline crippled and housebound for much of her late teens and early 20s could have been triggered by pills, called proton pump inhibitors (PPIs), prescribed by her GP to combat heartburn.
An estimated 67,200 UK adults have been diagnosed with microscopic colitis. And women are seven times more likely than men to be affected, according to a Swedish study published in April. (The number living with the condition may be in the hundreds of thousands, as at least one in 100 is thought to have the condition, according to charity Crohn’s & Colitis.)
One in three microscopic colitis patients may have been initially misdiagnosed with IBS, with a 2019 Liverpool University study suggesting 25 per cent of them wait at least a year for diagnosis.
It’s an autoimmune disease, where the immune system attacks healthy cells. Triggers for this can include a family history of the disorder, smoking or even a run-of-the-mill bacterial or viral infection — which the immune system overreacts to, and targets healthy cells in the colon.
There is growing evidence that widely used medications may also trigger it. These include non-steroidal anti-inflammatory drugs such as ibuprofen, anti-depressants known as SSRIs (selective serotonin reuptake inhibitors), aspirin, statins — and PPIs.
These are available both on prescription (such as omeprazole or lansoprazole) and over-the-counter (including Zanprol and Pantoloc Control) as treatments for acid reflux and heartburn — but their long-term use could lead to microscopic colitis, or worsen it.
About five million prescriptions a year in England are written for PPIs, which work by reducing the amount of digestive acid produced by your stomach. The drugs are meant to be taken for a few weeks at a time but many people end up on them for months or years through repeat prescriptions, or by buying them in pharmacies.
Previous studies have linked the long-term use of PPIs with premature death from heart disease, kidney disease and cancers of the upper gastrointestinal tract.
Caroline, who works in customer services and lives near Penzance, Cornwall, was seven when she started suffering stomach cramps and diarrhoea. Her parents took her back and forth to her GP in search of a diagnosis. First, it was thought to be a wheat allergy, then irritable bowel syndrome (IBS) — but none of the treatments for these worked [File photo]
And at least one study suggests PPI use increases the risk of microscopic colitis. Patients on lansoprazole, for example, were seven times more likely to develop microscopic colitis than the general population, according to scientists at Aarhus University in Denmark, who tracked more than 10,000 people diagnosed with the condition.
The results, published in 2018 in the journal Alimentary Pharmacology and Therapeutics, found that other PPIs increased the risk but to a lesser extent.
It is not clear from the study whether the drugs cause the development of the illness, or — as seems likely in Caroline’s case — made the symptoms much worse.
A 2017 study by a team at the University of Illinois at Chicago in the US came up with similar findings of increased risk from heartburn pills and called on GPs to investigate if they had patients on the drugs unnecessarily — and, if so, to stop them taking them at once.
‘It’s not known exactly why there is this link between PPIs and a patient developing microscopic colitis,’ says Professor Shaji Sebastian, inflammatory bowel disease lead at Hull University Teaching Hospitals. ‘But it could be that the acid-lowering agent has an effect on the balance of the microbiome, the bacteria in our guts, or changes the chemical composition within the gut, which may trigger an immune response resulting in inflammation.’
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He says PPIs are important treatments for some patients — like those with Barrett’s esophagus, where the lining of the gullet is damaged by acid reflux; by reducing the amount of stomach acid produced, PPIs can help reduce the risk of Barrett’s becoming esophageal cancer.
‘It’s a balancing act and you should always consult your GP or specialist about whether taking long-term PPIs is suitable for you,’ he says. ‘The key is to avoid over-use or mis-use by reviewing prescriptions of PPIs and ensuring that the indication for use still exists.’
One problem is that microscopic colitis is often misdiagnosed.
‘It isn’t as well recognized as other inflammatory bowel diseases like Crohn’s or ulcerative colitis,’ says Julie Harrington, chief executive officer of the charity Guts UK.
A key issue is that it is only diagnosed by colonoscopy (where a camera probe is inserted into the colon) and a biopsy, says Dr Matthew Kurien, a senior lecturer and consultant gastroenterologist at Sheffield University.
‘But because symptoms are similar to those for IBS, many GPs will just assume it is IBS and won’t consider referring patients for hospital tests.’
And the current focus is on the backlog of cancer diagnoses from the pandemic, pushing microscopic colitis down the list of priorities.
Caroline had stomach cramps and diarrhea throughout her childhood, worsening in her teens.
Wheat allergy tests were negative so her GP settled on a diagnosis of IBS, which causes symptoms such as stomach cramps, bloating, diarrhea and constipation.
‘My GP suggests a range of different treatments, including peppermint to soothe my digestive system,’ she says.
One of the drugs she was prescribed, age 19, was lansoprazole, which she took for six months for severe heartburn. Within weeks it made things worse.
‘I was constantly on the toilet and suffering the most agonizing stomach cramps. I stopped taking it because it hadn’t helped at all.’ It was only in her early 20s, after Caroline discovered there was a history of inflammatory bowel disease in her father’s family, that she began her own research — and realized IBS was not the culprit.
She insisted on being referred for hospital tests — but a colonoscopy, a gastroscopy (where a camera is passed down the throat) and an MRI scan were normal.
She pressed for a second opinion and was referred to specialists at University College Hospital, London, where a biopsy revealed she had microscopic colitis.
By now, aged 26, she’d struggled with her symptoms for nearly 20 years.
‘When the consultant rang with the result, I was so relieved to finally have a diagnosis that I burst into tears.’
She was prescribed a steroid (prednisolone) to calm her immune system and a diarrhoea drug (loperamide), to slow gut movement.
‘Within two weeks my stomach cramps had disappeared, I was only going to the loo five times a day, was able to eat more or less normally and was putting on healthy amounts of weight again.’
After a few months, she was only using the loo once a day.
Now she takes just two daily tablets of an immunosuppressant drug, azathioprine. She’s a size 10-12, at work and socializing.
The ‘tragedy’ says Julie Harrington, is that once someone has been diagnosed, treatment — usually steroids — can be prescribed ‘that will transform their lives very quickly. But all too often this chance is missed.’