~OYC TRAILBLAZERS~ Spotlight on Malaysian Crohnie & Ostomate Saravanan

It all started in early 2008 when I was still in high school and started to experience bowel disease symptoms. However, as many of us know, there can be a large gap between the time we experience symptoms and the time we are officially diagnosed. I was finally diagnosed with Crohn’s disease in July 2012.

The four and half years in between onset of symptoms and diagnosis were the most arduous part of my journey. My battle began upon developing a fistula. For those who may not be familiar, a fistula is an abnormal tract created between the intestinal wall and another organ or out on to the skin due to severe inflammation in the intestines. I remember feeling confused and embarrassed when I first noticed symptoms of blood and pus discharge. The symptoms worsened in mid-2009 after I began pursuing my degree in university and I began to lose a lot of weight (from 73kg to 48kg, or 172lbs to 106lbs).

By late 2009, I had two major surgeries (fistulectomies) to excise the fistula tracts. Not only did the surgeries not work, but also a single fistula branched out into multiple fistulae. I became so ill that I felt incapacitated and disabled. I had to postpone my studies to undergo surgeries as my condition worsened in mid-2011. On 7th December 2011, a colostomy was finally placed to relieve my colon and to allow the fistulae to heal. Unfortunately, the fistulae did not recover and new fistula tracts started to form yet again.

After many treatments and surgeries, in July 2012, my doctors finally realized that the fistulae formation was due to a severe form of Crohn’s disease, which is a type of inflammatory bowel disease (IBD). I still remember the day when my doctor told me that I have Crohn’s disease and explained in detail what it is along with control measures and related treatments that I would have to undergo. Truthfully, it was a huge relief to know the reason behind all my suffering but I could not help feeling devastated to learn that this is a chronic illness and that I will be on medication for the rest of my life.

It has not been an easy journey; in the last 11 years, I have already undergone 12 surgeries. I postponed my education for 2 years and I was nearly terminated from my program due to my illness. However, I went back to study immediately after my surgery in 2013. It took me six long years but I finally completed my degree in Accounting.

When I entered the workforce, managing my colostomy became my biggest challenge. I had to ensure that it was not leaking or overfilling and that I was cleaning and emptying it all the time. I was also worried whether my colleagues were even comfortable working with me. Sometimes I would have sharp abdominal pains suddenly during a meeting or while I would be out with my colleagues. But I simply had to face the pain. I disciplined myself to manage my diet so that I wouldn’t eat foods that created gas or contributed to painful symptoms. And I accustomed myself to check and empty my colostomy often.

SOCIETAL CONCERNS

At that time and even today, Crohn’s is considered a rare disease in Asian countries. There is limited research and very few medical specialists who are familiar with IBD. Plus there is so much stigma that it’s not something one can discuss openly with friends or even doctors. These were some of the reasons for my late diagnosis despite multiple recurring fistulae. Luckily, the understanding of IBD here in Malaysia has since improved, as more people have become aware of this disease and more research is being conducted here.

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It is challenging though to live in a society that does not understand that chronic illness is not just a phase or a temporary thing. It is all about survival for us. It is a fight with our very own body. And being an ostomate and a Crohn’s patient who has lived with multiple fistulae, the stigma is extraordinary. It’s hard to talk about, to explain, to relate to society. Even my own family was unable to understand the complexity of my disease and the struggles that I faced daily. My family relationships, studies, work, social life and private life have been affected irreversibly due to this disease.

MY DESIRE TO GIVE BACK

In order to give back to the community, in 2015, I formed a support group called Crohn’s and Colitis Society of Malaysia with a few other Crohn’s disease patients and doctors. I wanted to help and guide patients who suffer with this disease by giving motivational talks, organizing medical conferences, holding gatherings and also coordinating events to create awareness amongst the public in Malaysia. The support group is doing well as many people especially patients and primary caregivers have benefited from the activities and events we conduct. But sometimes patients struggle to attend due to fears of risking exposure, exposing vulnerability and facing stigma. Nevertheless, we persist in our awareness-building to help change the mindset and work toward creating acceptance for those of us living with IBD.

COVID-19 PANDEMIC STRESSORS

Regarding COVID-19, I’m very worried about two things as a Crohn’s patient and an ostomate: one is that I’m immunocompromised from being on Remicade infusions and the second is that I’m worried about the dearth of colostomy supplies. My gastroenterologist has asked me to continue my infusions so those are continuing on schedule. Staff at the infusion centers here in Kuala Lumpur are taking all necessary precautions for us to feel safe but I do worry about contracting the virus because of my immunocompromised status. As for colostomy supplies, I have a couple months’ worth but our ostomy supplier has mentioned they are running low on supplies due to manufacturing factories slowing production with the rise of the COVID-19 pandemic. A potential shortage of ostomy supplies is making me feel a bit at unease but we are doing our best at the Crohn’s & Colitis Society of Malaysia to work with a local hospital to distribute some of the hospital’s existing supply to ostomates.

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WISDOM TO IMPART

All this said, I am very fortunate to have a supportive family, friends and doctors to keep me motivated and happy. My life principles are very simple and I wish to share a few of them with others who fighting IBD like me:

• First, do not give up no matter what the situation is.
• Second, accept the reality of who you are, accept your disease as part of your body and accept that there is no permanent cure.
• Third, keep fighting. Fight this disease as there is still hope for future.
• Fourth, always put yourself in a positive frame of mind and motivate yourself.
• Finally, find someone who is willing to listen and to share in your pain. Talk with them to ease your emotional pain. Your emotional wellbeing is just as important as your physical wellbeing.

And to go along with the theme of Tina’s blog, I have to say: Own your Crohn’s, own your ostomy, and know you aren’t alone in your fight against this disease. We are all in this together and we are all one family of warriors fighting against a common enemy no matter where we live around the world.

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HAPPY NATIONAL MINORITY HEALTH MONTH!

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~~LOVE, LIGHT & PEACE ALWAYS~~

Hope you enjoyed this blog post! As always, feel free to share any feedback with me! I love hearing from you all!