Crohn’s disease patients left in agony by over-cautious doctors

Dozens of Britons with debilitating bowel disease are missing out on ‘life-changing’ surgery that could put their chronic illness into remission, experts fear.

About half a million Britons suffer from Crohn’s disease, which causes excruciating pain, diarrhoea, exhaustion and extreme weight loss.

In about one-fifth of patients, the condition, in which the intestinal wall becomes inflamed, can be controlled with medication.

But for the vast majority, the drugs won’t keep the disease at bay for long, and eventually they’ll need surgery to remove damaged parts of their gut.

According to guidelines from the NHS watchdog, the National Institute For Health And Care Excellence (NICE), surgery should be considered ‘as an alternative to medical treatment in the early stages of the disease’.

However, experts have warned that this doesn’t happen and doctors don’t offer the procedure unless all other options have failed — by which time the damage to the gut is more complex and difficult to treat.

‘For many patients, the drugs will stop working effectively within about a year,’ says Dr Nilofer Husnoo, a Crohn’s disease expert working at the Sheffield Teaching Hospitals NHS Foundation Trust. “And the longer they wait for surgery, the worse the damage to the gut. This makes the condition more difficult to treat in the long run.

‘The norm for doctors is focused on medication, but patients suffer more from it.’

Instead of offering surgery when two or three medications have failed, says Dr. Husnoo, surgery should be given as the first or second treatment in some cases.

“There are some patients for whom surgery wouldn’t be too complicated and could give them a lot of time in remission,” she adds. ‘These are young people who lead busy, active lives – we need to give them the best opportunities.’

Crohn’s disease, for which there is no cure, is primarily diagnosed in adults in their 20s and 30s

A 2013 analysis by experts at the Leeds Teaching Hospital NHS Trust found that the number of Crohn’s surgeries had halved since 2003.

Yet studies show that when surgery is performed early in the disease — after trying just one or two medications — three-quarters of patients do not need medication for the next five years.

“People often worry about surgery, but once they’ve had surgery, they find it changes their lives,” says Ruth Wakeman, director of services, advocacy and evidence at the charity Crohn’s & Colitis UK. “Patients often wish they had it done sooner.

‘It is very important that surgery is not seen as the last option.’

Crohn’s disease, for which there is no cure, is primarily diagnosed in adults in their 20s and 30s. The most common type is called ileocolitis, where the damage affects the end of the small intestine and the colon, or colon.

On top of the pain and exhaustion, patients with Crohn’s disease usually have trouble absorbing enough nutrients from regular diets. The exact cause of the disease is unknown, but a genetic flaw is thought to cause the immune system to attack healthy intestinal tissue. It has traditionally been treated with immunosuppressants to dampen the immune system and reduce inflammation.

But in the past 20 years, more powerful drugs called biologics have come on the market that block the proteins in the body that lead to inflammation. It means that surgery – known as a bowel resection – is now seen as a riskier alternative.

In a small number of cases, the surgery can lead to patients receiving a stoma – where the bowel is diverted out of the body into the abdomen and replaced with a bag.

Dr. Husnoo says it’s unfortunate that concerns about this outcome often keep patients from having surgery. “Surgery now is very different from surgery 20 years ago,” she says. ‘Thanks to new, minimally invasive techniques and specialist surgeons, it is rare to create a stoma these days. And if all goes well, the patient is usually out of the hospital within five days. Even if patients have a stoma, it is generally temporary and can be reversed a few months later.

“All these developments make it more attractive now than it was years ago, but the stigma around surgery may not be gone yet.”

One patient who has waited four years to have a bowel resection is 31-year-old Charlotte Hartill, a dental assistant from Plymouth.

After her diagnosis in 2010, she took six medications to control her flare-ups. Every two to three months, a treatment stopped working.

“They did nothing,” she says. “I was in pain for months and months and constantly in the bathroom.”

As a result, Charlotte lost two stones and suffered serious side effects, including a swollen pancreas and the skin condition psoriasis. She eventually went back to her specialist nurse for help.

“She examined me, ran tests and said I needed urgent surgery,” adds Charlotte.

In 2014, she underwent surgery to remove the damaged part of her intestine.

“I have my quality of life back,” she says. “If I had done it sooner, I probably wouldn’t have had to go through so many different treatments. I wish I had considered surgery a few years earlier – it gave me a fresh start.”