“Do not suffer in silence” – Adam’s story

My name is Adam Warner, I am 19 and I have recently been diagnosed with Ulcerative Colitis.

I first became symptomatic in February 2023. It started with excessive urgency to use the toilet – having to go more than 3 or 4 times a day. After about three months of these symptoms, I started to pass mucus. I saw my first GP who got bloods and faecal tests done. I was told that I had two viruses, and they should pass naturally. I returned back to this GP 2 months later because I started to pass small amounts of blood and more mucus. My GP decided to refer me as a Category 2 in the public system.

After waiting for over seven months for some form of communication from the hospital, I presumed that my referral was lost in the abyss. My symptoms started presenting as more problematic. I was going to the toilet around 8 times a day, passing blood every time I went to the toilet. I always needed a toilet nearby. Work breaks would be spent in the bathroom. I’d go out for a walk and turn around after five minutes because of this urgency.

I then decided to change my GP and take a different approach at navigating the health system. I decided to get referred privately so I could see someone quicker. In June 2024, my symptoms became worse. I was passing a lot of blood and started to become anemic. It got to the point where I couldn’t make it to the toilet, and I started wearing nappies when leaving the house. I started having panic attacks in public and at work. I didn’t go out on the weekends or parties because I was scared that I would have to try and explain to everyone why I need to go to the toilet so much. I was able to get two months off work because of the anxiety and depression that I had developed, as well as my UC symptoms. I now take anti-anxiety medication.

After waiting for so long, I saw a specialist and got admitted through the public system. I was then admitted to hospital after a diagnosis, which followed a sigmoidoscopy. I spent a week in hospital and started medication to get me into remission. On my first day in hospital I went to the toilet 13 times — on the last day I went once. After three days of being in hospital, I stopped bleeding and started passing solid faeces again. I had to get an iron infusion because of the blood I lost. I am still on oral steroids and don’t have any symptoms. I was told by the specialist and my GP before my diagnosis that I could go to the Emergency Department, but I didn’t feel I could take priority over someone who needed the help. After talking with the nurses and specialists at the hospital I now feel comfortable that I can go to the emergency department if I need to.

The start of my IBD journey has been highly traumatic and has been filled with anxiety and stress. Just getting the diagnosis was all that I needed to settle me. I urge anyone who is symptomatic and who does not have a diagnosis to push your GP or go to emergency to get the answers you need. No-one should have to live in fear about not knowing what is happening in their body.

Speak up to people around you about your mental and physical health. Do not suffer in silence.

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