- For young patients, having an inflammatory bowel disease (IBD) can have a life-altering impact
- There are two main types of IBD: Crohn’s disease and ulcerative colitis
- The IBD clinic at NUH has seen an increase in patients with the disease; two in five patients are under 40
- Having IBD also increases one’s risk of getting colorectal cancer
- A 23-year-old Singaporean who had symptoms since she was 15 told of how she required surgery thrice
SINGAPORE — Undergraduate Genevieve Tiong has spent the past seven years grappling with a digestive system that causes her to endure unbearable stomach pain, bloody stools and severe diarrhoea.
Diagnosed with Crohn’s disease, one of the main types of inflammatory bowel disease (IBD), the 23-year-old told of how her life has been derailed due to the debilitating condition.
IBD is characterised by chronic swelling of the digestive tract, and can disrupt the body’s ability to digest food, absorb nutrition and eliminate waste properly.
Crohn’s disease can affect the digestive tract at any part, from the mouth to the anus, and the last part of the small intestine, which comprises the colon and area around the anus, is the most commonly affected.
Ulcerative colitis, the other main IBD, causes inflammation and ulcers in the inner lining of the large intestine.
Since her diagnosis in 2017, Miss Tiong has tried various treatment methods to cope with the worsening symptoms. When all available medications could not work, part of her intestine was surgically removed.
One of the hardest parts about being a young person with Crohn’s disease is the psychological impact. Besides affecting her daily routine, the disease has also forced her to put her studies on hold for the past one-and-a-half years.
“It has been very taxing, physically and mentally, having to deal with repeated surgeries and hospitalisations,” she said.
“Sometimes, I feel like I have ‘fomo’ (fear of missing out). At first, I thought, ‘Yay, I get to miss class (due to hospital visits)’, but after a while, the longer you live with it, you realise that everyone else is moving ahead together while you’re left behind.”
MORE CASES SEEN AT CLINIC IN NUH
Worldwide, IBD is on the rise, and Singapore is catching up with the pack.
Inflammatory bowel diseases can be demanding to manage at any age, but for young patients, having a long-term condition that affects all aspects of life so early can hit hard.
Dr Chok Aik Yong said that an estimated 1,500 people here have the disease. He is the medical director at Aelius Surgical Centre in Mount Elizabeth Hospital (Orchard).
About half of Dr Chok’s patients are between 20 and 40 years old. The consultant surgeon, who specialises in managing colorectal diseases, treated Miss Tiong.
Around 600 patients are now on active follow-up at the IBD clinic of the National University Hospital (NUH) — a number that has steadily grown by around 10 per cent each year.
Dr Juanda Leo Hartono said that around two in five of the patients are under 40 years old. The senior consultant is with the hospital’s division of gastroenterology and hepatology, department of medicine.
IBD occurs most commonly in early adulthood — between the 20s and 30s — or later in life between the 50s and 60s, Dr Chok said.
Dr Look is a consultant surgeon in gastrointestinal, laparoscopic and obesity surgery.
HOW IBD HITS YOUNG ADULTS HARD
Miss Tiong believes that if she were diagnosed earlier, she would have been able to control her symptoms better for a longer period of time.
In 2015, she was a 15-year-old student preparing for her examinations when she started getting persistent stomach aches and bloody stools.
She recalled having fatigue, recurrent low-grade fevers and severe diarrhoea up to eight times a day.
Initially dismissed by doctors as stress, Miss Tiong endured the symptoms, which continued well after her exams ended, taking only paracetamol when the pain became unbearable.
The frequent stomach aches and diarrhoea made social activities challenging. “I had to ensure that there was always a restroom nearby,” she said.
She was officially diagnosed two years later in 2017 after undergoing a colonoscopy, which revealed inflammation in her intestine.
Outlining the challenges that young patients face, Dr Juanda said: “When individuals get IBD at a young age, it sets the foundation for their entire future. It may have an impact on their studies, affect their jobs and family planning — even the willingness to start a family may be affected.”
Dr Chok said that the chronic inflammation results in multiple negative consequences, including damage and injury to the digestive tract.
The digestive system losses its ability to function, digest food and absorb nutrients normally, which can result in nutritional deficiencies.
“IBD that is left to progress would have a negative impact on disease and treatment outcomes.
“If untreated, this may have medical, financial, and social implications for the young patient, particularly if prolonged hospitalisation or complicated surgical procedures are required.
“The social implications are often profound and long-lasting,” Dr Chok added.
IBD is also a risk factor for colorectal cancer.
“Chronic inflammation due to IBD, particularly among patients who have had the disease for more than 10 years, increases their risk of developing colorectal cancer, despite the relatively young age at diagnosis,” Dr Chok said.
Dr Look of PanAsia Surgery said that the risk of people with IBD developing colorectal cancer is four to 10 times that of a person without the disease — and the risk depends on the duration in which the person has had the disease.
Other cancers linked to IBD include small bowel cancer, intestinal lymphoma and bile duct cancer.
Dr Chok pointed to an analysis of more than 31,000 Asian patients, which found that patients who has had ulcerative colitis for many years have an increased risk of colorectal cancer.
The risk of colorectal cancer was reported to be around 4.8 per cent at 20 years and almost 14 per cent at 30 years, based on the findings published in 2017 in The Lancet Gastroenterology and Hepatology.
Severe inflammation of the bowel can also lead to severe complications such as bowel perforation (ruptured bowel) and sepsis (blood infection), which could put life at risk, Dr Chok said.
The disease is not the same as irritable bowel syndrome (IBS), which does not increase the risk of developing colorectal cancer.
IBS is also a chronic condition that affects the gut but it does not involve chronic and prolonged inflammation of the bowel seen in IBD. Dr Chok said that the treatment for IBS is usually with medications to reduce pain and bloating due to spasms of the intestine.
TREATMENTS FOR IBD
The doctors said that people with IBD will need medications to control the chronic inflammation in the gut.
Due to its complexity, the disease is often managed using a multidisciplinary approach, Dr Chok said.
For instance, a colorectal surgeon and gastroenterologist will prescribe and administer medications to treat the condition.
At the same time, specialised nurses, pharmacists and dieticians work together to optimise nutrition in patients who are unable to absorb enough nutrients to meet the body’s daily requirements.
Dr Look said that while surgery may be able to remove the diseased segment of the bowel, it is not usually the primary treatment option for IBD.
This is because patients may experience a disturbance in bowel function if a large amount of intestine is removed.
Dr Chok said: “Unfortunately, in some cases, surgery is the only solution for the patient, especially when the patient develops complications. These complications may arise from untreated and uncontrolled IBD and postoperative complications (after surgery).”
Even then, the treatment journey often does not end with surgery.
“After surgery, most patients require medications and treatments either weekly, once in two weeks, or every six weeks, for a continued duration of six months to one year,” Dr Chok added.
“This has a huge impact on the finances and productivity of the patient. To achieve long-term control of the IBD, biologic therapy may be required for some patients.”
Biologic therapy is a form of treatment using drugs derived from animal or human proteins.
THREE SURGERIES, MULTIPLE COMPLICATIONS
Last year, Miss Tiong opted for surgery to remove a severely affected segment of her intestine when medication could no longer help her manage the inflammation.
Despite trying several biologics, the effects were only temporary.
However, after surgery, complications occurred.
She developed a leak at the surgical site, which led to an infection and a hospital stay of three months.
To manage the complication, intestinal fluids had to be drained through a tube and she was put on full bowel rest. “This meant I could not eat or drink, and had to take sustenance intravenously for a few months,” she explained.
The complications persisted and Miss Tiong eventually decided to transfer to another hospital, where she came under the care of Dr Chok at the time.
A second surgery was performed to introduce a stoma bag that collected stools outside of the body to allow the bowel to rest.
Miss Tiong said that she chose to go with a temporary stoma bag instead of waiting for the situation to improve because the procedure would enable her to resume eating and allow her surgical site to heal properly, while diverting waste out of the intestine into an external colostomy bag.
“I expected the first surgery to get me better, but that didn’t happen,” she added.
“Having to deal with the side effects that came with it, not knowing when I will get better and having to go for more surgeries to fix the complications — all the uncertainty wore me down a lot because I don’t know when the suffering will end.”
She lived with a stoma bag for several months before undergoing a third operation in February this year to reverse the stoma and fix the leak in her intestine.
While the stoma healed well, she was re-admitted for other complications from her first surgery.
MOVING TOWARDS RECOVERY
Today, Miss Tiong still gets weekly injections to control her condition, but she is recovering well and gradually returning to normal activities.
She recently went for a walk with a friend — something that she no longer takes for granted.
“I’m extremely grateful for the support of my family, especially my mother, who has stood by my side every step of the way. My friends have also been accommodating,” she said.
She still has to be cautious about what she eats. For example, she has to take small frequent easily digestible meals such as porridge, steamed fish and minced meat, and avoid high-fibre foods such as vegetables, fruit and nuts temporarily because these will stress her intestines.
“I am working closely with a dietitian to return to a normal diet soon,” she said, adding that she hasn’t eaten fast food for more than a year. “Sometimes I miss food from McDonald’s but I can’t eat it now.”
Having experienced the isolation of battling IBD, Miss Tiong feels that there needs to be more awareness and avenues of support for young people such as herself.
“There is a lot of information on the internet, but much of it is catered to Westerners.”
For instance, on how people with IBD cope with the disease, most of the accounts were from people living outside Asia and the tips they gave may not apply to her.
“Diet-wise, some of the food and diet plans they recommend do not align with the typical Asian diet. Some of the websites recommend taking applesauce, (easier to digest) after a Crohn’s flare, but I’ve never heard of applesauce before researching the topic,” she said.
“Back then, I felt quite lost. If you’re young, have a considerably rare condition and no one to turn to, it can feel very lonely,” she said, adding that she found out about the Crohn’s and Colitis Society of Singapore recently.
The society has a patient support group and works with healthcare professionals to organise talks on IBD so that patients can learn to better manage their condition.
Miss Tiong’s experience has changed her perspectives on having children as well as her career aspiration.
She has decided against having children in the future. “There’s no clear cause (for Crohn’s disease) but I really don’t want to risk it. If it’s a genetic cause, and I pass it down to my kids, I don’t think that’s very fair to them.”
As for her career, she hopes to pursue a master’s in art therapy after completing her degree studies.
“Through my sessions with an art therapist in the hospital, I realised that having a creative outlet helped me processed what I was going through. Now, I want to similarly help youth who are also struggling, too,” she said