Community Connection | IBD
I sat on the toilet for the tenth time that day, clueless about what was going on inside of me. For the past seven months, I had been experiencing episodes of bloody diarrhea and had yet to be diagnosed. My ass is spewing blood and I am worried that I am losing a lot of it. I thought to myself: if I were back home in the Philippines, I would probably hear someone say “Baka kinulam ka” (“Someone probably hexed you”). Filipinos, although predominantly Catholic, have their share of beliefs – both superstitious and supernatural. Kulam, a form of folk magic, is one of them.
I turned 40 three months ago and had high hopes for midlife and aging gracefully. Never did I expect my life to change so suddenly upon entering a new decade. And so, here I am on a festive December evening in the toilet, thinking about all the names of gastrointestinal diseases I gathered from WebMD instead of drinking at a neighborhood bar with my husband, Jerry. Whoever said “life begins at 40” probably did not have to face chronic illness.
Barely an hour after my colonoscopy, my GI doctor reported her findings: “It’s ulcerative colitis,” she said. “Ugh, why does it have to be THAT one?” I thought to myself. I had read about how colitis is an incurable autoimmune disorder. Jerry held my hand reassuringly as we listened to the doctor explain my condition. I did not worry about how Jerry and I would manage this illness together. He knew I was determined to control what I can control and do whatever it took to minimize my symptoms. What concerned me most was how it would affect my relationship with the rest of my family and friends and how it would impact my work.
I was born and raised in the Philippines as the only child of a father who is a self-confessed carnivore and carb-ivore (rice and noodles all the way!) and a New Age-leaning mother who loves vegetables. My mom taught me how to cook and also influenced me to have an adventurous palate. From a young age, my parents showed me how to be brave, open-minded, and assertive. They were far from being the traditional strict and deeply religious Filipino parents in the 70’s. My professional persona is like that of my mother – we are both people-pleasers and perhaps this is how I ended up working in the hospitality industry. Privately, I am more like my father. We both do not like confrontation, nor do we like to explain ourselves needlessly.
I am not sure how I got colitis. No one in our family has it. I can only suspect that three decades of working in the hospitality industry may have contributed to my stress levels. I have assumed a customer-facing role since I started working in 1997 when I was still in my 20s. I worked odd shifts back then, did not get enough sleep, and did not exercise consistently. I coped with my stress by smoking at least one cigarette after each meal and every confrontation. I drank after work, and I would gorge on all my favorite comfort foods to feed my spirit (usually cake, pastry, or a pasta dish). Some people think it is cool and glamorous to work for a luxury hotel because you get all dolled up every day and you get to meet celebrities. But what you do not often see are employees dealing with complaints, taking all the blows, and unable to answer back because “the customer is always right.”
When I got married and moved to California, I continued my career in hospitality, quit smoking cold turkey, and committed to a healthier diet and lifestyle. I incorporated fruits and vegetables in my meals, slept longer, exercised at least three days a week, and drank eight glasses of water every day. My work hours were more manageable, but the stress levels were still high. Stress, in my opinion, was the only consistent factor leading up to my diagnosis; it continues to exacerbate my flare-ups today.
My parents were relieved that I was already living in the U.S. when I received my diagnosis. While we have brilliant doctors and nurses in the Philippines, inflammatory bowel disease (IBD) is not as common there as it is in the U.S. Furthermore, health insurance in the Philippines also works differently. I may have had to spend more on my insurance plan or out-of-pocket costs if I still lived there. Simply put, my previous hotel job in Manila would not have been enough to cover my medical expenses for ulcerative colitis.
It was not until I visited the Philippines in 2016 that I came to a sad realization about my condition: there were aspects of our culture that made it difficult for chronically ill patients to thrive. The fact that ulcerative colitis is an invisible illness made it even more arduous.
While it is not as prevalent as it used to be, you may still find people in the Philippines who will greet you based on your weight instead of the more courteous, “Hello.” Either they will say, “Hey, you gained weight,” or in my case, “Hey, you lost weight.” This kind of greeting prompted me to explain my weight loss. It allowed me to educate people on IBD – probably not the answer they’re expecting as most people would rather hear about a diet you have successfully tried. Be warned: you cannot walk away from this inquiry (especially if it’s weight loss). Failure to provide a suitable explanation will encourage people to create their own theories and gossip.
Then there is the concept of pakikisama, or getting along with others. When I was younger, I said “yes” to almost everything because I preferred to avoid conflict, and I did not want to be labeled uncool, dull, or a killjoy. Because of my IBD, I now had to set boundaries and say no to things that I used to do and enjoy freely:
“Sorry, but I can’t stay out late anymore.”
“Can we go to a different restaurant? There’s nothing on the menu that I can eat.”
“I absolutely need my own bathroom.”
“I can’t eat your pancit, Auntie; my system can’t process it the way it used to.”
“No tequila shots for me, thank you.”
After this, another trait kicks in called hiya, or shame. There were moments when I felt ashamed because, not only did I have to divulge the details of my illness (sometimes bordering on TMI), but I may have possibly disappointed or hurt someone’s feelings because of the boundaries I’ve set. I felt terrible about not reciprocating other people’s energy, and I worried about being judged unfairly. Worst of all, I found myself apologizing for my illness when I should not have been.
Then I realized, perhaps if we start changing our conversations, we can change people’s behavior. I had to start with myself.
After that trip to the Philippines, it took me six flare-ups, two hospital visits, and a raging pandemic to propel me to create my website, Dear Colitis.
Dear Colitis was born out of my desire to connect with other Filipino IBD patients to tackle important issues, such as our cultural challenges and IBD awareness, and discuss treatments, diet, and lifestyle, among other things. The site features my blog, where I chronicle my experiences as a Filipina with IBD, and it links to my @dearcolitis accounts on Instagram and Facebook. Through my advocacy, I’ve connected with other patients internationally, and I’ve also become an active member of the Crohn’s & Colitis Philippines Support Group.
Being vocal about my illness has incredibly improved my relationships with family, friends, and even co-workers. It may have taken me a lot of time, patience, and explaining for them to understand what I was going through. But all that effort has given me peace of mind knowing that I can have comfortable spaces with those who genuinely care for me. I can feel safe being myself, colitis and all.
If you have IBD, don’t be afraid to open up and speak your truth. It took me seven years to share my story because I thought it would not make a difference. As it turned out, it did, and it continues to do so – through Dear Colitis. For this disease, whose cure has yet to be discovered, every single story counts!
Demi’s Bio: Demi was born and raised in Quezon City, Philippines and currently resides in San Diego with her husband, Jerry. She is a graduate of the University of the Philippines Diliman with a degree in B.A. Art History, but it was a twist of fate (the need for immediate employment!) that shifted her direction to hospitality. She’s been a hotelier for 24 years now.
Demi enjoys discovering new, gut-friendly products, experimenting with recipes in the kitchen and creating healthier alternatives to her favorite foods. Her love for travel motivates her to stay healthy so she can explore more places in the world with Jerry. Demi is currently in remission and keeps herself busy watching K-dramas, learning French and doing her best to keep her plants alive.