“I am not giving up hope”- Kasey’s story
My story began in September 2023 (42 years of age), I had noticed a small amount of blood in the toilet. Thinking it was from constipation and straining as I had never had regular bowel movements. Sadly, this wasn’t the case, and the symptoms increased. I finally found the courage to go and make an appointment with a doctor.
The same day at work I had noticed significant bloating (like I was 9 months pregnant) and remember feeling extremely uncomfortable. After work I had seen the doctor who made me more nervous asking if I had any relatives with bowel cancer and I did, my Aunty had sadly passed from bowel cancer when I was very young. I was given an internal exam which was extremely uncomfortable given the circumstances and was told to book an appointment with a specialist. That night the pain was horrendous; I was vomiting and couldn’t sleep. At 5am I took myself to hospital only to be told I had appendicitis and required an appendectomy the following day. After surgery I had been told my appendix had burst but the surgeon reassured me my previous symptoms had come from the appendicitis and with it being removed, I had believed him.
Six weeks later I returned to my doctor and told him my story, in which he stated he had never heard of the appendicitis causing bleeding from the bowel and requested I did a stool sample. Sure enough, blood was present and whilst waiting for the appointment to the general surgeon who treated the appendicitis the symptoms became increasingly worse. I was diagnosed after a colonoscopy with a handwritten letter stating my proctitis was very angry and to eat a low residue diet, avoid fatty foods, walk 3 kilometres and drink 3 litres of water per day. I was prescribed 5 days of oral steroids and 1 box of 1mg mesalazine suppositories. Again, I was promised this would cure my proctitis. Feeling lost not knowing what proctitis was, I began to do some research on the web with little to no luck. Again, my trust was destroyed when the medication given did not ease my symptoms at all. I returned to my doctor feeling broken hearted that the one person I had trusted had given me misleading and false hope. My doctor then prescribed prednisolone suppositories which put me in remission.
Ten months later my Mum was admitted to hospital for 20 days. The stress and worry got me thinking I was going to lose her caused me to relapse. The bleeding was severe, constant bathroom trips, toilet accidents, feeling bloated, pressure, I developed a fissure which was like passing glass. I was uncomfortable with an extremely sore tail bone having to use a cushion to sit. Sadly, the prednisolone suppositories did not work or even provide a small amount of relief this time.
I took myself to the hospital in March 2025 feeling defeated once again. This time the hospital referred me to an amazing gastroenterologist who squeezed me in on the same day as being admitted to hospital for a colonoscopy. I was told I have moderate proctitis. It was then I was told proctitis is ulcerative colitis depending on where it is located in the bowel. Finally feeling a sense of relief knowing I had finally found someone who not only wants to help but is informative. Since seeing the gastroenterologist, I have been given so much information to understand not only this lifelong disease, but also the medication I take. I am still currently in a flare but now understand that stress is my trigger.
I am not giving up hope and want to share my story with others who may have similar symptoms and feeling completely lost. Please seek specialist help from a gastroenterologist who is specially trained to help people with IBD. Reach out to others in IBD groups because having someone to talk to that can relate to you is invaluable for your mental health. You are not alone, it’s just sad many do not share their story.