Living with UC in my 20s – Lucy’s story

Image supplied by Lucy.

Growing up, I sensed something was different about my ‘gut’.

Raised in a traditional Asian household, the concept of dairy allergies and gut issues were taboo. I repeatedly experienced “food poisoning symptoms” after consuming milk and dairy produce, which led me to seek specialist advice. This, despite being told by my family “lactose intolerance wasn’t real”.

In my early 20s (around 2014-2015), persistent bloody, mucus-filled stool, diarrhea, abdominal pain, and sudden weight loss prompted me to go see a gastroenterologist and get my first colonoscopy. This revealed my diagnosis of lower colitis and dairy allergies. I was prescribed steroid enemas and oral steroids to reduce the inflammation.

Months later, symptoms vanished, and a follow-up colonoscopy showed very minimal inflammation. I returned to a state of remission.

Fast forward to 2018-2020, I noticed significant blood in the toilet, and experienced mucus, diarrhea, substantial weight loss, fatigue, abdominal pain, and prolonged toilet visits signaled a relapse. I became anaemic due to the blood loss. Another colonoscopy uncovered polyps, extensive inflammation, and ulcers spanning 25cm of the left side of my large intestine, which I was then diagnosed with ulcerative colitis. I was put back on steroid enemas and oral Mezavant. It was a never-ending cycle, with monthly to quarterly visits to the specialist for blood tests and faecal calprotectin. It took a toll on my mental health.

I worked full time jobs, and there were countless times when I took sick days because I was feeling unwell (mentally and physically). I was often told “you don’t look sick” and often feared that I would be fired for taking too many sick days. It really affected my self-esteem and mental health. It wasn’t until I met a friend a work who shared the same experience as me. We often talked about our experiences and ‘TMI’ (too much information) stories. The feeling of speaking about it to someone who shared my experiences lifted a lot of weight off my shoulders. We both felt the stigma at work and from our families. Through these converstations, I felt relieved and at ease.

Since mid 2023, I stopped taking medications.* I began putting myself on a self-care routine and focused on my mental wellbeing. I began to notice my symptoms disappearing and began to feel ‘normal’ again. My inflammation levels were dropping and so were my bathroom visits. Early this year (2024), I had faecal calprotectin done and it revealed I had lower inflammation. I can happily share that I am back to remission. Being on this journey has taught me to be more self-aware, and to never judge a book by its cover. I want to spread awareness and help people who are going through this.

IBD is an invisible illness. A person may look fine on the outside, however, their insides might be a different story.

*Absence of symptoms can occur while inflammation is present. CCA recommends any change in medication should be discussed with your treating doctor.

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