Starting out with ulcerative colitis


My ulcerative colitis (UC) journey started in early October 2021. In the beginning, I felt a great deal of embarrassment from it. At the time, I was 19, away from home living at college and studying full-time. One morning I woke up with symptoms I had never experienced before, and I had no idea what was going on. Inflammatory bowel disease was something I had never heard of until, while sitting on the toilet, I researched: “Why is there blood in my stool?”.

I was too ashamed to tell anyone what I was going through, not my family, not my partner, not even a doctor. I hid it for as long as I could, thinking it would simply pass. But living at college and sharing just three toilets with 12 people made it extremely hard to hide.

When university had ended for the year, I went home and realised what I thought would simply pass was getting worse. It became obvious to my parents that I had lost a lot of weight and I started to look quite sick. After finally telling them what I had been going through, I began a series of testing and doctors’ appointments.

After several tests and an urgent colonoscopy, it was revealed that half of my colon was ulcerated and bleeding. While it was a weight lifted off my shoulders to finally understand what was happening to me, the not knowing felt far better than knowing that at the age of 19, I was diagnosed with this lifelong disease.

It’s been overwhelming and the hardest part has been acceptance. At times it feels like a life sentence, and I often find myself grieving a life without UC because it is so life altering.

I have good days and bad days as everyone with IBD experiences. I still remember the day of my colonoscopy – waking up with the surgeon peering over me and his exact words being “It looks like you have ulcerative colitis”. I remember feeling so sad when he told me because I knew what lay ahead of me was this huge journey no one had prepared me for.


Since my diagnosis I have been trialling all sorts of foods and diets to try and alleviate my symptoms. With my fatigue and constant abdominal pains, I haven’t been able to get back into exercising or playing sport, which I loved doing.

On bad days I find it hard to socialise, to keep up with my university work and overall just function. A simple task can turn into a big one. And a big day out can mean taking a few days off to recover. Every day, I feel consumed by the disease and there’s not a day where I am not reminded that I have it.

One of my main triggers for this disease is stress. I decided to drop a subject at university to make it more manageable with this disease. I also made the decision to not work a part-time job while I study because I knew that it would be too much pressure on my body. I live in a share house with two other girls and I’m fortunate that they aren’t too keen on going out and socialising all the time, so I don’t ever feel left out when I can’t make social commitments.

That so little is known about this disease can be quite unsettling, but every day I am learning more about it and the ways I can help manage it so I can live a “normal” life. I sometimes worry that this disease is going to delay getting my degree. That it’ll limit where I can work and what I can do because I need to be close to a toilet. That later down the track I’ll struggle to have a family of my own and that if I do, I’d pass on this disease to my children. I try not to focus on what might be my future with UC – rather I take it day by day, week by week.

On rough days this disease makes me feel so self-conscious about my body image. Since the start of experiencing symptoms to where I am today, I have struggled with how my body looks and seeing how much the disease really took over in such a short time frame. It really hit me when my clothes weren’t fitting the way they used to from unintended weight loss.

I often find myself looking through old photos and videos of me before any signs of this disease began showing, and I reminisce about those times and the way I looked. To others it may not look like I’ve changed, and it annoys me when people tell me, “Well, you look healthy” or “you carry it well”. What you see is not what I feel. It’s an invisible illness

Looking forward

I have learnt that I am a lot stronger than what I thought I was. For those three months where I hid my struggles, I managed to complete my second year of university. I worked a part-time job, I socialised, I got out of bed, I got dressed, I did everything I needed to do all while experiencing debilitating symptoms.

When I look back at myself now and how I did all that despite what I was going through, I know I can get through the next challenges that lie ahead. What’s different from then and now is that I have an IBD team, including a nurse. I’m on medications that help my symptoms. I go to regular check-ups with dietitians and gastroenterologists. In short, I have a lot more support.

I consider myself pretty lucky. Lucky that my doctors listened to me in the beginning, because it meant I was diagnosed early, treated early and now I am aiming for remission.

My tips

Having to fight a battle with your own body is exhausting, so one thing I have learnt is to listen to it. I often take a lot of self-care days when I can feel my body is exhausted. These include taking a nice warm bath, cancelling plans, watching my favourite TV shows and sleeping. I also have treat myself days where I usually go and buy a new plant, or I go thrift shopping.

Don’t isolate yourself. It is a lonely, scary and confusing journey to go through by yourself. Just know that there is a whole IBD community out there waiting for you to join them. Support groups are an open space where you can talk about anything and everything related to this disease. There is no shame and no such thing as too much information. I wouldn’t be where I am now, as strong as I am now and as positive as I am now, without my supportive family, partner, friends and support group.

I know for me, when I was first diagnosed with UC that it’s not the pain or the not knowing when you will reach remission (or if you will) that hurts the most. It’s the suffering and the way people will look at you and treat you as if you’re fine. It’s the loss of dignity and self-worth. It’s the feeling of having big hopes and dreams but being trapped in a body with constant fatigue and lack of motivation.

You are not alone with these feelings. If you’re someone who has just been diagnosed, I want you to know you will never be alone in this journey