Three years ago, Garry Naftarski was facing major surgery to remove his bowel.
He knew the operation would leave him with a stoma bag and force him to give up his job as a diving instructor.
But it was his only hope for an end to the agonising pain and life-destroying symptoms he’d suffered – for the better part of ten years – due to gut disorder ulcerative colitis, a condition that affects 140,000 UK patients.
For Garry, who was 33 at the time, it was a bleak choice.
‘I was told it was impossible to get my disease under control with drugs and there was damage all the way up my digestive tract,’ he recalls. ‘For five years I’d barely been able to go out because I was scared I’d have an accident.
‘I was constantly exhausted, my wife had to help me get in and out of the bath. I’d go to the toilet 20 to 30 times a day and could barely move because of the stomach pain.’
Father-of-two Garry Naftarski (pictured with his daughter Poppy) was one of the first British patients to try a new ulcerative colitis drug called filgotinib – and it transformed his life
But Garry didn’t have the operation. Shortly before his surgery was scheduled, he was thrown an alternative lifeline – the chance to become one of the first Britons to try a new ulcerative colitis drug – and it transformed his life.
Now he has returned to his high-energy job, is well enough to run around after his two young children, Max, six, and Poppy, three.
He says: ‘I’d tried every treatment under the sun and nothing worked. Now I’d say my health is back to how it was before my diagnosis.’
Experts say the daily pill, called filgotinib, will be available on the NHS within months after studies showed nearly half of patients saw their symptoms vanish after a year.
The drug is one of a group of medicines known as janus kinase (JAK) inhibitors, some of which are already used to treat rheumatoid arthritis.
Doctors hope the breakthrough will mean sufferers no longer need to rely on powerful medications that suppress the immune system, which come with a host of life-wrecking side effects.
‘It’s an exciting time for colitis patients,’ says Dr Daniel Gaya, consultant gastroenterologist from Glasgow Royal Infirmary. ‘A decade ago, there were little to no options for a large chunk of people with severe disease.
‘Now we have medicines that don’t just work to stop symptoms temporarily, but actually seem to alter the nature of the disease for good.’
Ulcerative colitis develops when the immune system attacks healthy gut tissue, causing ulcers and inflammation in the lining of the bowel, triggering pain, uncontrollable diarrhoea and bleeding.
It’s perhaps the lesser-known type of the inflammatory bowel diseases, despite it being the most common. The other type is Crohn’s Disease, which affects about 115,000 Britons.
In Crohn’s, the inflammation and damage occurs along the entire digestive tract, from end to end. But in colitis, just the large bowel, including the back passage, is affected.
Two age groups are most commonly diagnosed: those in their mid 30s and people in their 50s and 60s.
Many older patients suffer what’s known as microscopic colitis, where damage isn’t visible unless bowel tissue is removed and examined under a microscope.
Doctors don’t yet know what causes the condition, or why the microscopic type is more common in older adults, but those with parents or siblings with the disease are up to 30 per cent more likely to suffer.
Some research suggests a viral or bacterial infection may disturb the balance of healthy microbes in the bowel, causing the immune system to go into overdrive.
Experts say the daily pill, called filgotinib, will be available on the NHS within months after studies showed nearly half of patients saw their symptoms vanish after a year. Pictured: Stock image
The most common tell-tale sign is blood in the stools – but that causes a key problem with diagnosis. ‘Most people think if they have blood in the stools, it’s cancer,’ says Dr Gaya.
‘And so as soon as they find out it isn’t cancer – which happens in 95 per cent of cases – they don’t go back to the doctor for further investigations until the symptoms get worse.’
By then, the disease is likely to be advanced and harder to treat.
Experts say there are thousands of Britons with the condition currently undiagnosed – with up to ten per cent of over-50s thought to have some form of the disease.
‘With microscopic colitis, often the only symptom patients present with is diarrhoea, which is easily mistaken for irritable bowel syndrome,’ says Dr Ian Beales, consultant gastroenterologist at the Norfolk and Norwich University Hospital.
‘Patients are otherwise well, so they do nothing.’
If a patient is suspected to have colitis, the first step is a stool sample test for a protein called calprotectin – a sign of inflammation in the gut.
If there’s a positive result, a specialist gastroenterologist will conduct further tests to look for physical signs of damage.
This usually involves a endoscopy procedure – in which a camera is inserted down the throat and samples of the tissue are cut away for testing.
Once a diagnosis is made, patients are first offered drugs called aminosalicylates, which work directly on the gut lining, reducing the inflammation and promoting the growth of new, healthy tissue.
For most patients with moderate to severe disease, these fail to work at all.
Next, doctors try drugs to suppress the immune system. But not only do these cause a host of unpleasant side effects, they only control the disease in roughly a third of patients, according to studies.
‘These aggressive drugs dampen down the effect of the immune system on the entire body,’ says Dr Gaya. ‘But patients can feel very rough after picking up even the most minor of infections.’
What’s the difference… Between a side effect and an adverse event?
During clinical trials for a drug, experts try to track any unexpected negative effects – usually by monitoring trial volunteers and questioning them about any and every symptom they might have experienced.
These are reported at the end of the trial, and are known as adverse events.
These may or may not have been caused by the drug or treatment itself – further analysis is usually needed to work out if there is a direct causal link.
If so, it may be determined to be a side effect – a term that refers to a known consequence of that treatment.
Other side effects include nausea and vomiting, aching joints and persistent fevers.
Newer ‘biological’ drugs block chemical messages that cause the immune system to attack the gut but treatment involves injections in hospital once every eight weeks, and then a wait of least a month for the effects to kick in.
Again, these only work in a third of cases, and lose effectiveness over time.
If all else fails, many patients are forced to rely on short courses of potent steroids which temporarily dampen inflammation but raise the risk of other diseases as well as causing skin damage, weight gain and mental health problems.
Eventually, patients are left with little option but to have their bowel removed.
Unlike previous treatments that involve regular injections, JAK inhibitors come in the form of a daily pill.
The drugs change the way that immune cells found in the gut work, stopping them from attacking healthy bowel tissue.
But they don’t interfere with the rest of the immune system. The compound also vanishes from the system in 24 hours, meaning side effects are minimal.
Roughly two years ago, health chiefs approved the first JAK inhibitor – tofacitinib – for colitis patients who’d failed to respond to other treatments, following trials that showed a fifth of patients achieved total remission after just two months on the drug, with minimal side effects.
Trials of the newer filgotinib showed that after a year, nearly half of all patients on it were symptom free – not cured, but classed as ‘in remission’.
‘None of these drugs work for everyone, nor are they miracle workers,’ says Dr Beales.
‘But the difference is they’re far easier to take and patients can stay on them for a long time without suffering side effects.
‘It’s not just about improving their colitis symptoms, it’s also ensuring their life isn’t constantly impacted by their illness and the effect of drugs they take to control it.’
Another patient to benefit is Holly Turner, a 26-year-old designer from South London.
She noticed an unexpected benefit soon after she began taking tofacitinib last month: the eczema that covered her arms and legs almost vanished.
Holly, who also has colitis, was prescribed the new generation treatment after nearly a decade of suffering persistent diarrhoea.
‘I was diagnosed when I was 16 after spotting blood in the toilet, and spent the next few years on and off strong steroids to control my extreme flare-ups,’ she says.
‘The drugs then made me constantly ill with colds and flu and, in my early twenties, they sparked a series of panic attacks.’
Further immune-suppressing injections failed to stop her constant flare-ups.
Finally, last month, her gastroenterologist suggested that she try tofacitinib.
Holly says: ‘In two weeks, my symptoms pretty much disappeared, and I didn’t have any side effects other than dizziness at the very beginning.’
But most bizarrely, the patches of eczema that Holly has suffered for the past two years have also eased up. ‘My skin is nearly completely clear of dry, flaky patches,’ she says.
‘It’s like a wonder drug. Finally I feel like I can go out and live my life completely normally.’
Earlier this month, the UK health watchdog NICE approved another JAK inhibitor drug, called baricitinib, for the treatment of eczema – first reported in this newspaper.
Eczema is also caused by overactive fighter cells released by the immune system – which JAK inhibitors work to control.
Garry experienced a similarly astonishing turnaround, after struggling with his mood on steroids and bad blisters with the newer biological drugs.
But with the new drug, things are markedly different. ‘I haven’t even have a headache. Nothing,’ he says. ‘Now, I go to the toilet as regularly as I did before I got ill. But there’s no urgency, no blood and no pain.’
Garry visits Dr Beales for monthly blood tests to monitor his inflammation, but is down to annual internal scans – as opposed to every couple of months, like most colitis patients.
And he says: ‘I’ll happily take this pill every day for the rest of my days – it’s given me my life back.’
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