When people hear “Crohn’s disease”, many picture just a stomach issue – something fixed with diet or pills. In reality, especially for those with perianal complications, it reshapes your entire life: how you structure your day, how much energy you can spare, and how freely you leave the house.
My name is Vincent. I am a ~40-year-old Malaysian Crohn’s warrior. My symptoms started years before my official diagnosis in 2012. For nearly three years, I was misdiagnosed and subjected to medical interventions for conditions I didn’t actually have. I knew something wasn’t right, but answers felt out of reach – a frustrating limbo where your body betrays you without explanation.
The Crohn’s diagnosis brought mixed feelings: fear of a lifelong chronic illness, but also relief at finally having a name for the chaos. In Malaysia, where IBD awareness remains low and it’s sometimes dismissed as a “Western” or “rich people’s disease,” that relief can be short-lived. Many doctors and people around you simply haven’t seen enough cases to understand the full picture.
Treatment Options
Treatment access adds another layer. Biologics like infliximab can control inflammation and help close fistulas when combined with antibiotics or surgery, but they’re extremely unaffordable for most Malaysians. Public hospitals offer subsidies for chronic conditions, yet long waits, and out-of-pocket costs for private care create real barriers. There are also limited specialists outside the main pockets of Malaysia, including the city of Kuala Lumpur and the state of Penang. I am fortunate to currently be in a clinical trial of Tulisokibart hoping that it will help my condition.
However, even when treatment works, side effects from both the IBD and the medication – especially crushing fatigue – linger. Fatigue is one of my toughest battles. After a full day of work, errands, or even light multi-level marketing activities), I’m often wiped out. While others might spend their evenings out or pursue hobbies on the weekend, I am often resting and recovering — a necessary rhythm to recharge for the next day.
Everyday Life with IBD
Symptoms of IBD can be unpredictable – diarrhea can strike suddenly with little warning. Simple activities such as a long drive, a meeting, or being far from home can become sources of stress. You mentally map every restroom, calculate distances, and sometimes cancel plans altogether.
This takes a toll on social life. I’ve skipped gatherings because I wasn’t well enough or feared an episode. Explaining an “invisible” illness is hard; people see you looking okay and don’t grasp why you’re not joining social activities.
Over time, my Crohn’s progressed to a more complex form: perianal disease, involving fistulas, abscesses, infections, all requiring repeated interventions, including drainage procedures (like my recent one), setons to manage tracts, and ongoing monitoring to prevent sepsis. It’s painful, embarrassing at times, and a constant reminder that recovery is rarely linear.
Living with this condition in Malaysia has its unique hurdles. Awareness is growing slowly – groups like the Crohn’s and Colitis Society of Malaysia exist – but many still don’t know what IBD entails let alone perianal complications common in Asian patients. Explaining our symptoms and needs can feel isolating in a culture where bathroom issues carry stigma.
What Crohn’s Has Taught Me
Despite all the challenges, Crohn’s has taught me patience, resilience, and how to adapt. I listen to my body more closely now: low-residue meals during flares, timing activities around energy peaks, and pushing for proper treatment because I’ve seen what happens without it.
Every Crohn’s journey differs, but many of us share the uncertainty, fatigue, daily adjustments, and quiet determination to keep going.
I was encouraged to connect with the Strategic Alliance for Intercultural Advocacy for GI (SAIA) because I believe that sharing experiences beyond Malaysia can help accelerate awareness back home. I’m excited to be part of a community where patients support one another, and where stronger voices for people living with IBD can continue to grow, including in Malaysia.
If you’re in Malaysia living with IBD, or supporting someone who is, please know that you’re not alone. Sharing experiences helps build understanding and community.
One step at a time – we keep moving forward.
Signing off,
Vincent, a chronic illness warrior inspired to keep fighting and finding ways to shine