Inflammatory bowel disease: Help! Where is the nearest toilet?

Nasty side effects of inflammatory bowel disease include fever, diarrhoea, blood in stools, abdominal pain and weight loss

Mr Muhammad Sharifuddin. ST PHOTO: SEAH KWANG PENG

For a long time, people with inflammatory bowel disease (IBD) in Asia were largely left to fend for themselves.

There was very little attention devoted to the disease as it was considered a predominantly Western affliction.

This has changed in the last decade or so. The number of IBD patients in Asia has increased exponentially.

These patients number almost 2,000 here, a sharp increase from two to three decades ago. They suffer one of the two main forms of IBD - Crohn's disease and ulcerative colitis.

There are more than twice as many ulcerative colitis patients diagnosed here in the 2000s than in the 1980s.

According to a 2015 study done here, 10 in every 100,000 Singaporeans have Crohn's today, up from 2 per 100,000 20 years ago.

The recent increase in patients here is part of a general trend seen across Asia.

Mr Muhammad Sharifuddin is one of them. He was 27 when he was diagnosed in 1994 with Crohn's disease.

He had been suffering from diarrhoea, abdominal pain, blood in the stools, weight loss and fever since his teenage years.

His symptoms worsened to the point that he was going in and out of the toilet up to 20 times a day.

"During my younger days, my family elders just told me to eat more vegetables," said the 49-year- old. This was the opposite of what he needed to do to manage his condition.

Awareness of IBD was very low then.

Mr Sharifuddin, who is 1.6m tall but weighs only 40kg, said: "People think I'm a long-distance runner. But I'm not really a healthy-lifestyle kind of person.

"Even today, many people and some doctors still don't know much about IBD and how it attacks our lives. "

As its name might suggest, IBD is a chronic condition characterised by inflammation in parts of the digestive tract.

The patients' immune systems attack healthy tissue in the digestive tract by mistake, causing the inflammation.

Higher subsidies needed for costly medication

Ulcerative colitis patients suffer from continuous inflammation in their large intestine.

In Crohn's disease, inflammation can occur anywhere in the gastrointestinal tract, from the mouth to the anus and other parts of the body, including the eyes, joints and skin.

Doctors still do not know exactly what causes IBD, but believe that environmental factors, such as diet, trigger the onset of the disease in genetically-predisposed people.

"Genetic changes occur only over hundreds and thousands of years," said Dr Ling Khoon Lin, a gastroenterologist at Mount Elizabeth Medical Centre. "Therefore, changes in our environment are probably responsible for the increase in IBD cases in Asia."

One plausible theory is the Westernisation of lifestyles in Singapore, including diets, over the years, said Dr David Ong, senior consultant at the Division of Gastroenterology and Hepatology at the National University Hospital.

Both doctors say the increase in the number of patients is real and not just from better recognition of the conditions.

A 2013 study found an increase in the incidence of IBD in second- generation South Asian immigrants to the United Kingdom and Canada as compared to their parents.

Some possible reasons identified were diet and more urbanised environments.

Several theories may explain the increased incidence of IBD in urban societies.

One of them, the hygiene hypothesis, proposes that the lack of early childhood exposure to enteric pathogens with improved sanitation in urban cities increases the incidence of IBD.

Most patients start developing IBD in the prime of their lives, between 20 and 40 years old.

Mr Sharifuddin, a customer relations supervisor at TransitLink, was previously working in the logistics section, carrying heavy loads daily, when he was first diagnosed.

"Initially, I took a lot of medical leave and my job performance was really affected," he said.

On some days, he would force himself to go to work even when he had severe abdominal cramps.

"I learnt to bear with it. I told myself it should be mind over matter," said Mr Sharifuddin.

But new medical advances, understanding and the increased profile of the disease here over the last decade have improved the quality of life for patients substantially.

A new class of drugs known as biologics, which was first introduced to IBD patients in the United States in 2002, became available here in 2004.

These are injectible drugs that work by blocking the action of specific molecules that produce inflammation.

Previously, treatment consisted of trying to alleviate patients' symptoms and reduce pain. "We are now hoping to heal (ulcers in) the intestinal lining," said Dr Ong. "Biologics have raised the standard of what physicians expect."

But the understanding of each patient's profile is still important. For example, Crohn's patients with strictures like Mr Sharifuddin's need to be on a low-fibre diet. Those with active IBD symptoms should be on a low-fat, low-milk diet.

As only 15 to 20 per cent of IBD patients are on biologics, most still experience some disruption in their lives.

This is mainly because the cost of going on biologics is very high - patients pay up to $30,000 a year.

The Government's Medication Assistance Fund was expanded to include biologics in 2014 and covers from 50 to 75 per cent of the medication costs, depending on the patient's income level.

But the amount subsidised still has to go up a lot more, said Dr Ling.

"We are looking at a whole group of patients who are under-treated, who go for more operations and who might develop depression," he said.

A 2015 Canadian study showed that IBD patients are twice as likely to suffer from general anxiety disorders than those without the condition.

The anxiety arises from not only dealing with physical IBD symptoms, but also the psychological effects of managing an incurable chronic condition, including paying for medication.

Most patients are on more affordable classes of drugs such as immunomodulators (average annual cost $360) or mesalazine ($864).

These still work to a degree but, unlike biologics, do not cause the disease to go into full remission.

Symptoms might, therefore, persist, although less severely.

Mr Sharifuddin was put on biologics in 2010 after the older types of medication lost their effectiveness. With additional funds from the Health Ministry, 85 per cent of his medication costs are subsidised.

"Some others in my patient support group ration their medication to make it last longer because of the cost," he said.

Mr Sharifuddin volunteers at the Crohn's and Colitis Society of Singapore, a support group founded by fellow Crohn's sufferer Nidhi Swarup.

The group ( meets monthly to share a meal and catch up with one another.

IBD patients today suffer less in isolation and "things have improved on the medical side", said Mr Sharifuddin.

"When I had a bad relapse in 2002, I was treated by a liver doctor. There were not many IBD specialists then," he said.

"Now we have our own clinic at NUH and our own hotline."

Join ST's Telegram channel and get the latest breaking news delivered to you.

A version of this article appeared in the print edition of The Straits Times on September 13, 2016, with the headline Inflammatory bowel disease: Help! Where is the nearest toilet?. Subscribe