This S’pore man’s digestive system ends in a bag but he’s not letting that stop him from living life

Stories of Us: 21-year-old Ui Wun Juan had a life-saving surgery to clear an obstruction in his small intestine in 2014. He has been living with a stoma bag since then, but is determined to live a normal and active life.

Nigel Chua | December 21, 2020, 11:28 AM

A cheeky grin appears on 21-year-old Ui Wun Juan's face as he dribbles past his friend, feinting left before moving to the right to take a shot.

It's just another Saturday for the full-time National Serviceman (NSF), whom friends call Juan.

If you didn't know more about him, however, you'd probably think that he was just any other 21-year-old.

But Ui has lived, and is living, a rather different life from his peers, having been diagnosed with Crohn's disease when he was just 13.

He is also currently living with a stoma bag.

Photo by Abriel Tay.

In the months before his diagnosis, Ui experienced bloody diarrhoea, frequent vomiting, and weight loss of up to 5kg — all symptoms of the disease, which causes inflammation in the intestines.

"I was still very young back then, and I didn't really understand what is the illness about.

So I actually felt very sad and depressed. And I asked myself why I have a disease. And why am I not normal like others?"

With medication, however, Ui was gradually able to get back to life as per normal.

Ui with his doctor and his parents at KK Women's and Children's Hospital. Photo courtesy of Ui Wun Juan.

Life-saving operation

In 2014, however, things took a turn for the worse, when Ui was coming to the end of Secondary Two studies.

Ui started to feel his abdomen growing in size and experienced more episodes of bloody diarrhoea.

Blood loss through his stools became so severe that he needed a blood transfusion.

As Singapore General Hospital (SGH) doctors discovered, his small intestine was growing in size, swelling from inflammation and creating a blockage in his digestive system.

It necessitated surgical intervention to prevent his intestine from bursting and causing a more severe and potentially life-threatening infection.

The surgery involved removing a part of his small intestine, which was then attached to an opening in his abdomen, called a stoma.

A bag was then attached to the stoma to collect Ui's waste.

"People usually poo using their anus, but for us, people who have stoma bags, we actually collect our poo via the bag," he says, matter-of-factly.

Photo courtesy of Ui Wun Juan.

"I told myself that I need to be normal again"

A significant part of the recovery process for Ui, after the surgery was the psychological adjustment to his new reality.

"The initial part where I have to accept that [the] stoma bag is part of me," Ui says, was the most difficult part of the last eight years.

Aside from the self-consciousness that came with walking around with a stoma bag, one of Ui's immediate fears was that he would not be able to continue doing sports, which had — up till then — been a big part of his life.

"Slowly, I told myself that I need to be normal again."

Thankfully, Ui says, he has had a largely normal life since then, going through his primary and secondary education with no delays, and graduating with a diploma in Chemical and Biomolecular Engineering Ngee Ann Polytechnic in 2019.

Photo courtesy of Ui Wun Juan.

For his determination to recover and adjust to life with his new circumstances, he was chosen as a winner of SingHealth's Inspirational Patient and Caregiver Awards 2020.

"I was able to learn to live life with a stoma bag and slowly I [could] get back to my normal life again," Ui says, crediting the nurses and doctors from the medical team at SGH where he was treated, as well as his family, for helping him adjust to life with a stoma bag.

What's it like to live with a stoma bag, I ask Ui.

He finds that he gets thirsty more quickly than before, an effect of his shorter-than-usual digestive system.

He can't go swimming, soak in a bathtub, or do anything that involves prolonged immersion of the stoma in water.

Aside from that, however, he says his life is "pretty normal", and has been able to resume sports and physical activity, with a particular affinity for running and basketball.

Photo by Abriel Tay.

Ui exercises five times a week and has started to run longer distances, even taking part in a 7km running event last year with some friends.

He also continues to be on medication to manage his condition, but says that this does not require him to have a special diet, gleefully telling us that he'll be heading to McDonald's for breakfast after our interview is over.

Postponing closure of the stoma

If there's one thing that proves how life has really gone back to normal for Ui after the surgery, it's the fact that he chose to postpone a procedure to close the stoma in 2016.

The opportunity arose at the start of his diploma studies, but Ui was keen to go through the full course on schedule, with the rest of his batch.

"I almost didn't make it to Secondary Four," he says, explaining that the major surgery in 2014 cost him months of curriculum time and nearly saw him needing to repeat a year.

Going ahead with the surgery would have disrupted his academic progression as it would involve up to three months of recovery time, as well as follow-up checkups.

This is why Ui chose to experience "the whole poly[technic] life" without disruption, and decided to postpone the surgery even though it meant living with his stoma bag for a bit longer.

"I think I'm very used to the stoma bag already," he says.

The procedure will be carried out before he starts his undergraduate studies at Nanyang Technological University next year.

Photo by Abriel Tay.

And he is looking forward to being able to have a day at the beach, to be able to soak in the seawater.

Bungee jumping is also on the list of things he wants to do.

However, there is a possibility that in future, he may have to reverse the process and have to live with a stoma bag once again.

"If it comes, it comes," says Ui, explaining that Crohn's disease is a chronic disease that cannot be completely cured, and another inflammation of his intestine may well occur in the future.

But he is hoping that sports and a healthy lifestyle will help to keep things under control.

Helping others

“Having Crohn's disease actually made me a more positive person," Ui shares.

"I'm actually thankful for this experience.”

Ui shares how the difficulties that he encounters in life now are put into perspective when compared to the challenge of dealing with his condition.

“I'm able to be more positive about it and I can overcome it [easier],” he adds.

Ui at his BMT Graduation with his parents. Photo courtesy of Ui Wun Juan.

Having had the experience of adjusting to life with a stoma bag, Ui has been helping other patients come to terms with it too.

He explains that a nurse encouraged him to share his experience with other patients who are in the same medical situation.

"I'm just sharing my experience," he says, "to make them feel better and tell them that they're not alone, and [that] having a stoma bag is actually not that bad, and you still can live life as per normal."

After all, Ui says, the hardest part of the entire process for him, since 2014, was the psychological aspect, and accepting his condition as part of life.

Similarly, most of the patients whom he talks to struggle with accepting their stoma bags and hearing from someone just like them makes them feel better, he says.

Ui's advice to his fellow patients is:

“Have a positive outlook in life, just be positive overall. Don't let the stoma bag hold you back. Just do things as per normal and do things that you like. Don’t see the stoma bag as a deterrent to your daily life.”

Stories of Us is a series about ordinary people in Singapore and the unique ways they’re living their lives. Be it breaking away from conventions, pursuing an atypical passion, or the struggles they are facing, these stories remind us both of our individual uniqueness and our collective humanity.

Totally unrelated but follow and listen to our podcast here