SINGAPORE – Mr Ashly Markose lost almost a quarter of his body weight in one week because of inflammatory bowel disease (IBD).
His first flare-up of the chronic disease in 2017 saw him hospitalised for 10 days after prolonged diarrhoea, with bloody stools. As a result, his weight dropped from 84kg to 64kg.
“I wasn’t able to eat anything. I was on an IV (intravenous drip) for seven days,” recalls the 44-year-old Singapore permanent resident, who works in the information technology sector.
A colonoscopy eventually showed that he was having his first flare-up of ulcerative colitis.
Mr Markose had no warning symptoms until his hospitalisation.
Doctors say this is often the case with IBD, incidences of which are on the rise in Singapore and around the world.
This chronic disease can be asymptomatic in the early stages, or mistaken for irritable bowel syndrome (IBS) or food poisoning.
There is no cure for IBD, though it can be managed with medication. However, finding the right treatment regimen can take months, with patients having to deal with the impact on their daily lives.
Ulcerative colitis caused the late Japanese prime minister Shinzo Abe to resign from politics twice – first in 2007 and again in 2020.
IBD can cause pain and fatigue in patients. It may lead patients to suffer from uncontrolled bowel movements as well, which can be embarrassing and affect their ability to go to work or school.
Mr Markose wore adult diapers for two years until his symptoms could be managed with medication. It helped that his wife is a nurse, with a matter-of-fact attitude towards him occasionally soiling himself.
Still, he says, those two years were tough. “Even when I went out with my wife, the first thing we would have to do was look for the nearest toilet.”
Mr Ashly Markose had no idea he had inflammatory bowel disease until his first flare-up and hospitalisation in 2017. ST PHOTO: BRIAN TEO
Delayed diagnosis and rising number of cases
IBD is a chronic disease and is immune-mediated, which means it develops because of a dysregulated immune system. Because of this, the body cannot control or restrain an immune response. The gut is inflamed and ulcers develop.
The two main types of IBD are Crohn’s disease, which can affect the entire digestive system from the mouth to the large intestines and anus; and ulcerative colitis, which is limited to the large intestines.
The disease can develop in people aged 20 to 40, though children may also develop IBD.
More cases of the disease are being diagnosed around the world as well as in Singapore, according to doctors The Straits Times (ST) spoke to.
Singapore General Hospital (SGH) established its IBD Centre in 2005 and, in 2007, managed 250 active patients.
In 2022, hospital managed 850 active patients, according to Dr Webber Chan Pak Wo, director of the hospital’s inflammatory bowel disease service. He is also senior consultant gastroenterologist at SGH’s department of gastroenterology and hepatology.
While no exact cause explains the rise of IBD, Dr Chan says the development of the disease is linked to a combination of factors, such as a dysregulated immune system, abnormal gut microbiome and environmental factors such as smoking, physical inactivity, antibiotic exposure, as well as high consumption of ultra-processed foods.
He adds that no increase in incidence has been observed because of Covid-19.
According to Dr Juanda Leo Hartono of the National University Hospital, NUH is managing about 600 active cases of IBD. This is compared with almost 400 cases reported by ST in 2018.
Stress could also be a factor, adds Dr Juanda, a senior consultant at NUH’s division of gastroenterology and hepatology, department of medicine. It can alter the composition of the gut microbiome, or intestinal micro-organisms, which contribute to proper immune functioning.
He and other doctors say there is often a delay in diagnosing IBD. Symptoms can be confused for other conditions, such as IBS or haemorrhoids.
As a result, patients do not go for a colonoscopy, endoscopy or other diagnostic procedures that would identify IBD.
IBD can present as abdominal pain, diarrhoea and bloody stools, and weight loss. Some patients may complain of fatigue, loss of appetite or mouth ulcers, according to Dr Ho Gim Hin of Khoo Teck Puat Hospital (KTPH).
The inflammation may affect organs beyond the digestive system, adds the consultant at KTPH’s division of gastroenterology, department of general medicine. Some patients have joint pains, skin rashes and painful red eyes.
“It can take months to sometimes years before diagnosis, depending on the type of IBD and severity,” says Dr Ho.
KTPH sees between 300 and 350 patient visits to clinics a year because of IBD, and the numbers are on the rise. Some adult patients developed the disease in childhood, he adds.
Dr Shim Hang Hock, gastroenterologist at Parkway East Hospital, says patients can be “overwhelmed with the burden of symptoms from the active disease”.
Apart from dealing with abdominal pain and frequent visits to the toilet, there is psychological stress and the financial burden from having to take time off work, pay for medication and even hospital stays.
Prolonged IBD can also increase the patient’s risk of developing colorectal cancer, according to Dr Toh Ee Lin, senior consultant, general and colorectal surgeon at the private Ten Surgery Group.
“With increasing awareness and better medicines, the disease can be kept under control without major complications,” adds Dr Toh.
Treatment for IBD focuses on reducing chronic inflammation in the gut.
Medicines used include steroids; immunomodulators or immunosuppressants; 5-ASA or aminosalicylic acids; biologics (drugs made from living organisms or containing components of living organisms) and small molecule drugs (most can be administered orally and can pass through cell membranes to reach intracellular targets).
More complicated cases may require surgery to remove part of the intestine.
Another new method is a stool transplant – putting intestinal flora harvested from the faeces of a healthy person into the gut of an IBD patient.
Dr Juanda of NUH says that has worked to manage symptoms in three out of five stool transplant patients under his care.
Even when IBD can be controlled by medication, it can take some experimenting before patients find out what works for them.
Mr Markose, for example, was on steroids while in hospital, then on immunosuppressant drugs for 18 months.
Then, the immunosuppressants began to target his blood cells, leading to fatigue and low haemoglobin levels.
He now takes an intravenous infusion of medicines known as biologics once every eight weeks at KTPH. He has been warned that he may stop responding to these biologics in a decade.
Dr Chan of SGH says that positive changes can take six months to manifest and patients will be monitored every three to four months.
When symptoms resolve, there is a danger that patients will stop taking their medication, he adds. “IBD is a chronic disease. Patients should not stop their medication without consulting their doctors.”
Living with IBD
Mrs Nidhi Swarup, now 55, suffered from fatigue and diarrhoea for two years before she was hospitalised and diagnosed with mild Crohn’s disease in 2011. It caused her to quit her full-time job as executive director of the Foundation of Rotary Clubs here.
A year later, she founded the Crohn’s & Colitis Society of Singapore, which aims to support other patients with IBD and improve public awareness of the condition.
In 2015, it launched a “Can’t Wait” card for IBD patients to flash to explain why they need to jump the queue for toilets.
The society is developing informational materials for patient education and outreach, to be used at NUH.
Mrs Nidhi Swarup founded the Crohn’s & Colitis Society of Singapore, which raises awareness of inflammatory bowel disease. ST PHOTO: AZMI ATHNI
Mrs Swarup is also working with SGH on a survey of patients’ dietary beliefs and potential barriers to accepting a diet that could manage IBD symptoms. It is believed that some dietary interventions may help manage IBD, but research is still under way.
Mrs Swarup took 10 tablets a day for eight years before her ulcers healed. She is currently off medication, and goes for a review of her condition every six months.
She is an advocate for more research into IBD, and more public awareness so that people know how to support patients.
She recalls the crippling fatigue she dealt with when Crohn’s disease first flared up. “Because of the illness and the ulcers, even if you eat a balanced diet, the nutrients are not absorbed,” she says. This naturally leads to weakness.
“People don’t understand what IBD patients mean by fatigue,” she adds.
Sleep does not help. What did work for her was the advice of an occupational therapist, who suggested adding a five-minute walk to her routine. “Incorporating some exercise helps,” she says.
Mr Markose, too, dealt with fatigue because of IBD. Some of the medications also led him to gain weight till he tipped the scales at 96kg.
As his symptoms improved, he engaged a personal trainer to help with tailored exercise so that he could improve his muscle mass. His current weight is 89kg and he can eat any food, he says.
He wants other IBD patients to know that finding the right medical treatment and lifestyle adjustments can take a long time. Patients should be patient and trust doctors over “Dr Google”.
“Everyone is looking for the silver-bullet treatment for IBD,” he says. “Many people are not able to accept that there is no cure.”
IBD v IBS
IBD differs from IBS, though both may present similar symptoms, such as abdominal pain and diarrhoea.
People with IBD have chronic inflammation of the gut, says SGH’s Dr Chan.
IBS is a common disorder that affects the gastrointestinal tract. It causes symptoms such as abdominal pain, cramping, bloating, gas, and diarrhoea or constipation, or both. Managing stress, taking probiotics and avoiding trigger foods can help people manage IBS.
IBS may be related to having an oversensitive colon, but IBD is an immune-mediated disease, which means it is caused when the body’s immune system is dysregulated. Chronic inflammation leads to ulcers and, in prolonged cases, can increase the risk of developing colorectal cancer.
There is no cure for IBD, but it can be managed with medication.