Alex Ortiz was on holiday in Greece with her new partner Andy when the mortifying accident occurred.
After an evening meal, Andy was fast asleep in bed in their hotel – when Alex soiled the sheets.
‘I suddenly needed the loo urgently but couldn’t get there quickly enough and messed the bed,’ she recalls. Tip-toeing out of the room, she quickly cleaned herself and put a towel over the stained sheet.
Fortunately Andy didn’t notice and the next morning – ‘while he was showering, I stripped the bed and asked the cleaners for fresh bedding’, says Alex, 61, a mental health care manager. ‘It was embarrassing anyway – but even worse with a new partner.’
Afterwards she took great care with what she ate and drank and took ‘lots of anti-diarrhoea tablets’, not quite clear what the problem was.
Alex later discovered she actually had a form of inflammatory bowel disease, microscopic colitis.
An estimated 67,000 Britons are thought to have the condition, where the lining of the large intestine becomes inflamed, leading to watery diarrhoea, faecal incontinence, stomach cramps, fatigue and weight loss.
It often occurs in those over 50, is twice as common in women and is thought to be caused by problems with the immune system. Although it’s often easily treated once diagnosed, many suffer for years before it’s correctly identified – as it’s often mistaken for other conditions.
Alex discovered she had a form of inflammatory bowel disease, microscopic colitis, and it is estimated 67,000 Britons are thought to have the condition
In fact, 70 per cent of people with microscopic colitis were initially wrongly diagnosed with IBS, according to a survey of 185 patients with microscopic colitis, for the charity Guts UK, published last month. Almost a quarter of patients needed five or more visits to their GP to get a referral for hospital tests and five patients waited up to eight years.
What’s more, all participants reported the condition had a major impact on their physical and mental health, affecting their work and social lives; nearly half said it impacted their intimate relationships.
Alex’s first symptom was a dramatic change in her bowel habits in January 2022, which she put down to an infection.
But the ‘very watery diarrhoea’ did not clear up and she found herself barely able to get to the loo at work in time.
Things were even worse at night: ‘I’d often get up seven or eight times to rush to the bathroom,’ she says.
Her disturbed nights left her exhausted and suffering occasional bouts of dizziness.
Alex, from Wallingford, Oxfordshire, consulted her GP a couple of months later – tests, including a stool sample, came back as normal; with the same results when repeated after a few months.
The GP initially suggested anti-diarrhoea medication, which did not help. Alex was losing weight (going from 9st 4lb to around 8st 4lb – she’s 5ft 8in – in about six months).
By now Alex was looking ‘quite drawn – my skirts were just hanging off me’, she recalls.
She’d started seeing Andy, now 61, a sash window restorer, but was reluctant to venture out, refusing to go on long drives and even nervous of having an accident while out walking Andy’s terrier, Ralf.
Worrying about what to eat and drink dominated her life: she avoided orange juice and most fruits and focused on eating bread, porridge or eggs for breakfast ‘to try and bind me for a bit’. Whenever she ate anything, Alex heard ‘loud, terrible gurgling’ in her stomach, would suddenly feel bloated and urgently dash to the loo.
Microscopic colitis was first identified in 1976 – it’s not clear what causes it. But it is less common than inflammatory bowel diseases such as Crohn’s
She never left home without loo paper and spare underwear in case she had an accident.
When Andy commented on how frequently she went to the loo, Alex admitted she didn’t know the cause but that doctors were trying to find out.
But the Greek holiday, nine months after her first symptoms, was the final straw. On her return she again saw her GP and burst into tears saying: ‘Whatever this is, it’s ruining my life.’
After a colonoscopy and a biopsy, in January 2023, she was finally diagnosed with microscopic colitis, a year after her symptoms first began. Alex had never heard of the condition – ‘but it was a huge relief to finally know what the problem was’.
Microscopic colitis was first identified in 1976 – it’s not clear what causes it. But while it’s ‘a bit less common than inflammatory bowel diseases such as Crohn’s, it’s more common than people realise,’ says Chris Probert, a professor of gastroenterology at the University of Liverpool. It often appears out of the blue, ‘with sudden, watery diarrhoea – and without any blood or mucus’, he adds. There is no known link with diet.
Certain medications are, however, linked to it, including some proton pump inhibitor (PPI) drugs to treat acid reflux (especially lansoprazole and omeprazole), non-steroidal anti-inflammatory drugs (e.g. ibuprofen and diclofenac) and some antidepressants (such as duloxetine). It’s thought to affect older people simply because they have been exposed to more of these medications.
Anyone suffering with diarrhoea for six weeks or more should see their GP for further investigations, says Professor Probert.
And he warns against self-medicating with diarrhoea tablets.
‘Don’t ignore it – it could be a reaction to a new medicine you have started, which could be a cause of microscopic colitis.’
While a colonoscopy is a part of the ‘gold standard’ diagnostic test for microscopic colitis, a biopsy must also be performed – involving tissue samples being taken from the top, middle and bottom of the colon.
Once microscopic colitis is diagnosed, it can be quickly and successfully treated with budesonide, a steroid tablet, also commonly used to treat asthma
‘Microscopic colitis is frequently misdiagnosed because it doesn’t show up on a standard colonoscopy as the bowel looks normal unless biopsies are taken,’ explains Pearl Avery, a nurse practitioner in gut disease based at an NHS clinic in Weymouth.
The problem is that many GPs simply ‘don’t have microscopic colitis on their radar,’ she adds.
This was underlined by the Guts UK survey: only 15 per cent of patients with microscopic colitis had it recognised by their GP and were correctly referred for hospital tests, it found.
Furthermore, because the disease is more common in older women, symptoms can be attributed to menopause, ageing and stress, says Ms Avery.
‘I’ve heard of people being advised to use incontinence pads or drink peppermint tea, which does nothing. It shows how poorly understood the condition still is,’ she adds.
Once microscopic colitis is diagnosed, it can be quickly and successfully treated with budesonide, a steroid tablet, also commonly used to treat asthma.
Professor Probert says it works effectively on the surface of the colon tissue and very little is absorbed into the rest of the body, so most people won’t suffer any side-effects.
Most patients have a two or three-month course – but some may need a repeat prescription if symptoms return. Others need to be put on the lowest possible dose to maintain their remission.
For a minority who don’t respond to budesonide, immunosuppressant drugs may be considered. Another option is biologics, specifically engineered antibodies that block the molecules that drive inflammation.
In an ongoing global trial, including Oxford University Hospitals, patients who are in remission are being given a new drug SAR444336, which stimulates a type of white blood cell that helps the immune system fight disease – and which is thought might protect the body against some forms of inflammatory diseases.
Looking back, Alex now realises she had distinctive symptoms of microscopic colitis.
‘If these had been spotted by my GP, it could have spared a lot of misery,’ she says.
Following her diagnosis, she was prescribed a three-month course of budesonide – ‘It worked straight away for me,’ she says.
Alex has since had five flare-ups, which resolved with further steroids – and in March she joined the new trial in Oxford – but now feels she has her life back.
She is able to go mountain biking with Andy, but is still careful of what she eats and drinks.
‘It’s an embarrassing condition and it just comes on one day and then you’re stuck with it,’ she says. ‘That’s why I was keen to go on a trial to help others with microscopic colitis.’
gutscharity.org.uk
