I collapsed in the doctor’s surgery after having a blood test, because I was so weak from stomach pains. I’d been going to the toilet over 30 times a day and there was blood in my stools. I had my first colonoscopy to double check it was Colitis and see how bad it was. The pictures were awful. My colon was bright red and covered in ulcers, but it was a relief to finally get some answers for the symptoms I’d been having.
Over the years I had occasional flare-ups, but it was controlled by medication.
I found my symptoms were worse during stressful periods of my life. In my worst moments I can remember crawling upstairs in pain and cold sweats due to the pain.
However, years passed until around January 2019 I started feeling really unwell and completely drained.
Even walking upstairs was a marathon.
I’d had a baby two years before so at first I just put it down to being a mum.
I have regular blood tests to monitor my Colitis, and I remember mine showing that my iron levels were 4. Normal levels are 120-160 so I got rushed immediately to hospital and had an ECG as well as many other tests. I had a blood and iron infusion, was put on iron tablets, and then discharged to recover.
In the months that followed I kept getting indigestion and feeling sick after eating. I also had pain in my tummy, so I put it all down to Colitis.
Thankfully, my routine colonoscopy came around.
They told me there was a blockage on the lower end of my colon, known as the sigmoid colon, and took a biopsy for tests. I had a two week wait for the results and then found out that it was bowel cancer.
Looking back, I definitely think having Colitis masked some of my symptoms of bowel cancer. I have always been in pain so that wasn’t uncommon, and fatigue was normal too. I really didn’t expect to be told it was cancer. Plus, on top of that, I was told I needed a stoma. I was crushed.
My family is brilliant, so I had a great support network.
I had an operation in December 2019. The diseased part of my colon was cut away and an ileostomy was created.
After 7 hours of surgery the first thing I felt was amazing!
I wasn't in pain for the first time since 2002 and I didn't need medication.
I’m aware that I still have 30cm of colon left, so there’s still a chance of inflammation there, but at the moment it's all good. Having a stoma has led to something called diversion colitis in my remaining colon. This means that what’s left gets inflamed because it’s empty and there’s nothing passing through it. This is different to inflammatory bowel disease and the doctors have said there is no sign of Colitis.
I was tested for lynch syndrome, a genetic condition that increases risk of bowel cancer, but this came back negative. This means we don’t know what caused it but having Ulcerative Colitis for over 10 years increases risk.
I’m grateful for being under such a good team at the hospital. They also had a cancer wellbeing centre, so I had treatments there and they also gave me counselling.
It's now been 2 years since the cancer diagnosis, and I’ll have scans and blood tests for another three to make sure it doesn’t come back. As I've still got my sigmoid colon, I will also continue to be checked every year for signs of Ulcerative Colitis.
Cancer can happen to anyone any age. Please look for symptoms and act.
Raising awareness is so important and I've already had a few people following my journey say that they got checked out because of me.
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Find out about the risk associated with Crohn's and, particularly, Ulcerative Colitis.
