Diagnosed at 15, Genevieve Tiong struggled with inflammatory bowel disease (IBD) for seven years before she found some relief.

Genevieve Tiong’s world was turned upside down at 15 years old, when she was diagnosed with Crohn’s Disease. A type of inflammatory bowel disease (IBD), Crohn’s Disease causes swelling of the tissues or inflammation in the digestive tract, leading to abdominal pain, severe diarrhoea, fatigue, weight loss and malnutrition.

“In late 2015, during my exams, I started experiencing symptoms such as poor appetite, constant pain on the right side of my abdomen which worsened during meals and continued throughout the night; severe diarrhoea, sometimes up to eight times a day and even throughout the night; as well as fresh blood in my stools several times a week. I felt extremely lethargic by the middle of the day and took naps every day after school. I also had low-grade fevers that occurred a few times a week,” shares Genevieve, who is now 23 years old.

At first, she kept her symptoms to herself but when they persisted, she confided in her parents who insisted she consulted a doctor.

“As the symptoms were occurring during my exams, the doctor attributed them to stress and sent me home without any medication. I only took paracetamol when the pain became unbearable,” she says.

“Unfortunately, the symptoms persisted even after my exams ended. When going out with friends and family, I had to ensure there was always a restroom nearby to cope with my frequent diarrhoea. When my symptoms did not improve after a year, I suspected something was amiss.”

She visited a gastroenterologist in 2016, who put her on tuberculosis (TB) medication to rule out gut TB as a potential cause. After completing the six-month course of treatment, her blood test results showed no signs of improvement, prompting the gastroenterologist to recommend a colonoscopy. Genevieve underwent a colonoscopy in 2017, which revealed intestinal inflammation, leading to the diagnosis of Crohn’s Disease.

The diagnosis came as a shock to Genevieve, as there had been no history of the illness in her family, although her father has suffered from irritable bowel syndrome (IBS).

A streak of bad luck

At first, while she was an undergrad, she was prescribed with a steroid medication to control the inflammation, followed by several biologics. From 2017 to 2018, she also received monthly infusions of infliximab through an intravenous (IV) drip, followed by adalimumab via subcutaneous injections from 2018 to 2019.

“Initially, the treatment helped to alleviate my symptoms including diarrhoea, and improved my ability to eat, although meal portions were smaller than before the treatment. However, the efficacy of treatments appeared to diminish over time as my inflammatory markers remained between 100 to 1000 – critically above the normal range of 0 to 10,” she shares.

Having exhausted conservative treatment options, she opted for bowel resection surgery in May 2022 to remove the severely affected part of her intestine, hoping this would resolve her problem once and for all. Unfortunately, Genevieve developed a leak at the surgical site, which resulted in complications that kept her hospitalized for the next three months.

“To treat the infection and minimize the risk of further complications, I was prescribed five or six types of antibiotics, and put on full bowel rest, which meant I could not eat or drink at all, and took my sustenance intravenously. To manage the leak, a drainage tube was inserted into my body so the fluid could be drained out whenever necessary.”

She then learned that Singapore General Hospital (SGH) has a dedicated multidisciplinary team specializing in inflammatory bowel conditions and decided to transfer there, under the care of Consultant General Surgeon, Dr Chok Aik Yong. After assessing her condition and medical history, Dr Chok presented her with two options – either wait until the situation improves or undergo stoma surgery.

“I chose the latter as this procedure would enable me to resume eating solid food, while diverting waste out of my intestines and into an external colostomy bag so my first surgical site could heal properly. I was discharged from SGH two weeks later and returned for regular consultations with a nurse who ensured that my stoma was healing properly,” explains Genevieve.

After living with a stoma bag for three months, she underwent a second surgery in February 2023 to reverse the stoma and address the leak in her intestines. This time she no longer experienced any symptoms of Crohn’s Disease and was able to resume taking solid foods. She was advised against taking any medication for Crohn’s Disease until her stoma fully healed.

Hope at last

Genevieve has been on a prolonged leave of absence from school since May 2022, due to her having to undergo surgical procedures and hospital stays, and has had to miss several gatherings and events with friends.

Her symptoms appear to improve, and she is currently on weekly injections of adalimumab to manage her Crohn’s Disease, which she self-administers on her thigh or tummy.

“While my ordeal has had a significant impact on my physical and social well-being, I tend to have a relaxed approach to my condition and prefer to take each day as it comes. I am gradually returning to normal activities again. I have been able to move more freely and recently even went for a walk with a friend. As high-fibre foods can put stress on my intestines, I am currently avoiding vegetables, fruits, nuts, and seeds, but am working closely with my dieticians to return to a normal diet soon,” says Genevieve.

“I aspire to pursue a Master’s degree in Art Therapy abroad, so I must start planning for my future, and figure out how to manage my medical expenses, go for medical appointments, check-ups, and treatments, while attending lectures and tutorials, and research potential career opportunities. I have also decided against having children in the future, as I am likely to pass on Crohn’s Disease to them.”