Scores of Britons with a debilitating gut condition are missing out on “life-changing” surgery that could put their chronic illness into remission, experts fear.
Around half a million Britons suffer from Crohn’s disease, which causes excruciating pain, diarrhea, fatigue and extreme weight loss.
In about one fifth of patients, the inflammation of the intestinal mucosa can be kept under control with medication.
But for the vast majority, the drugs won’t keep the disease at bay for long, and they’ll eventually need surgery to remove damaged parts of their intestines.
According to guidelines set by NHS watchdog National Institute for Health and Care Excellence (NICE), surgery should be considered “as an alternative to medical treatment early in the disease course”.
Charlotte Hartill, a Plymouth dental assistant, pictured, suffered dramatic weight loss and incredible pain due to her Crohn’s disease and believes surgeons could have treated her sooner to spare her some ordeal
However, experts have warned that this is not the case and that doctors do not offer the procedure unless all other options have failed – at which point the gut damage is more complex and difficult to treat.
“For many patients, the drugs will stop working within a year or so,” says Dr. Nilofer Husnoo, an expert in Crohn’s disease from the Sheffield Teaching Hospitals NHS Foundation Trust. “And the longer they wait for the surgery, the worse the intestinal damage gets. This makes the condition more difficult to treat in the long term.
“The norm for doctors is drug-focused, but patients end up suffering more.”
Rather than offering surgery when two or three drugs have failed, in some cases surgery should be done as the first or second course of treatment, says Dr. Husnoo.
“There are some patients for whom surgery would not be too complex and could buy them a lot of time in remission,” she adds. “These are young people leading busy, active lives – we have to give them the best opportunities.”
Crohn’s disease, for which there is no cure, is mainly diagnosed in adults between the ages of 20 and 30
A 2013 analysis by experts at Leeds Teaching Hospital NHS Trust found that Crohn’s disease surgery rates had halved since 2003.
However, studies show that if they have surgery early in the disease stage — having tried just one or two medications — three-quarters of patients will not need any medication for the next five years.
“People are often afraid of surgery, but once they have surgery they find it is life-changing,” says Ruth Wakeman, Director of Services, Advocacy and Evidence at charity Crohn’s & Colitis UK. “Patients often wish they had had it done sooner.
“It’s really important that surgery isn’t seen as a last resort.”
Crohn’s disease, for which there is no cure, is mainly diagnosed in adults between the ages of 20 and 30. The most common type is called ileocolitis, in which the damage affects the end of the small intestine and the large or large intestine.
In addition to the pain and fatigue, people with Crohn’s disease usually have trouble getting enough nutrients from their regular diet. The exact cause of the disease is unknown, but it is believed that a genetic error causes the immune system to attack healthy gut tissue. It has historically been treated with immunosuppressive drugs to suppress the immune system and reduce inflammation.
But over the past 20 years, stronger drugs called biologics have emerged that block the proteins in the body that lead to inflammation. This means surgery – known as a bowel resection – is now seen as a riskier alternative.
In a small number of cases, surgery can result in patients ending up with a stoma — in which the bowel is drained from the body at the abdomen and replaced with a pouch.
dr Husnoo says it’s a shame that concerns about this outcome often put patients off surgery. “Surgery today is very different than it was 20 years ago,” she says. “Thanks to new, minimally invasive techniques and specialized surgeons, an ostomy is rarely created these days. And if all goes well, the patient is usually discharged from the hospital within five days. Even when patients have an ostomy, it is generally temporary and can be reversed a few months later.
“All of these developments make it a more attractive option today than it was years ago, but the stigma surrounding the surgery may not have gone away just yet.”
One patient who has waited four years for a bowel resection is 31-year-old Charlotte Hartill, a dental assistant from Plymouth.
After her diagnosis in 2010, she took six medications to keep her flare-ups under control. Every two to three months a treatment stopped working.
“They didn’t do anything,” she says. “I was in pain for months and was 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, did tests and said I needed an urgent operation,” adds Charlotte.
In 2014 she underwent surgery to remove the damaged area of her intestines.
“I got my quality of life back,” she says. “If I had done it earlier, 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.”
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