'I found blood in the toilet and had to pay £3,000 to skip waiting list'

A woman who was convinced she had bowel cancer after finding blood in the toilet had to pay £3,000 for tests after being told the NHS waiting list would take 'a long time'. Alissa Redmond, 34, a degree apprenticeship coach from North Wales started suffering symptoms which included blood in her stool and extreme fatigue.

Alissa struggles with health anxiety and was extremely panicked when she discovered her symptoms and that she would have to wait a long time for any NHS investigation. Due to her anxiety, Alissa borrowed £3,000 from her parents to see a private doctor to have a colonoscopy carried out.

She was convinced she had cancer, meaning when she finally got the diagnosis of ulcerative colitis, she was relieved rather than stressed. “Prior to my diagnosis, I had always been healthy,” Alissa said. “Bar the normal run-of-the-mill minor sicknesses and injuries, I had never really had any health concerns.

“In the months running up to my diagnosis, I was very stressed as I had experienced a run of bad luck over a six-month period, with issues selling my home which caused financial worries, which was followed by being put at risk of redundancy out of the blue. “It was only later that I learnt that stress is known to be a key trigger of flare-ups in people with ulcerative colitis.

“Good things were happening too though – only three weeks or so before my symptoms first started, my partner and I got engaged on one of our local beaches.”

Alissa’s journey with ulcerative colitis started in April, two days after finding out she had been successful in her application to keep her job. “I started passing blood along with my poo,” Alissa recalls. "Over a period of four days, every time I went to the toilet, the toilet water would turn red and bright red blood would saturate the toilet paper.

“The first day, I was a little worried but not too fazed. When it continued the next day and the next, I became concerned and booked an appointment with my GP. In all honesty, I expected to go to my appointment and be told, as I always had been previously in my life with any health concerns, that it was nothing; something minor and harmless like piles.

“As soon as the doctor said after an examination that currently the cause of my bleeding wasn’t obvious, I panicked. I burst into tears and the little fear that had been in the back of my mind came racing to the forefront – I was now terrified that I had bowel cancer.”

Alissa was told by the GP that she would be sent a kit in the post to test her stool for blood. “We spoke about whether I had had any other symptoms; unexplained weight loss, fatigue, diarrhoea, and all of my answers were no,” she adds.

“Within a week I had the results of my test, which showed levels of blood in my poo high enough to warrant further investigation. My test result was 21. Because it wasn’t explained to me what the normal range might be or how high someone’s score might be, such as in the hundreds, this sounded like a really high score to me. This is when I started to spiral into a real panic. I was absolutely convinced I must have cancer, and I was terrified.

“I was referred for a colonoscopy by my GP, and was told that I would be on the list to be seen urgently, which only added to my terror. My assumption had been that because of this urgency, within a few weeks I would have had my colonoscopy, but a few weeks went by and I still didn’t have a date for it.

“I called the booking clerk at the hospital and this is when I was told that due to the lengthy waiting list, I wouldn’t be seen until June.”

By this point, though Alissa hadn’t experienced any more bleeding, she was experiencing fatigue, nausea and minor abdominal pain.
She was an anxious wreck, convinced that she had cancer, and that each new symptom was a sign that it was spreading.

“Looking back, of course, my anxiety itself was exacerbating some of these symptoms, but at the time I was terrified that it was cancer, and it was getting more serious and less treatable in the time it would take to get my colonoscopy,” Alissa explains. “Consumed by fear, I made the call to my parents; ‘Can I please borrow £3000?’.

“Two weeks later, which was five weeks since my initial bleeding, I was travelling from my home on Anglesey to Chester to get my colonoscopy by paying for it privately. I had never before even considered private healthcare because quite frankly, I couldn’t afford it, but by this point, I had spiralled down so far into my anxiety that I had convinced myself I was dying.

“In my mind, I was paying £3,000 to save my life. My colonoscopy showed a small area of ulcers, and this was confirmed by biopsy to be caused by ulcerative colitis.”

Alissa says that she was overjoyed to receive the diagnosis because although it was a serious condition, it wasn’t the cancer she had been fearing. “How did I feel to be told that I had a lifelong condition? I was elated!” she explains.

“I was just so incredibly relieved about what it wasn’t. It was only over the coming weeks and months that it started to dawn on me the reality of what it was. I stand by the decision I made to spend the money on getting a colonoscopy sooner, because my mental health was at rock bottom, and I couldn’t see how I could have mentally endured another month of waiting.

“And while all of this was happening I actually got put at risk of redundancy again, and ended up taking voluntary redundancy and finding a new job, so I paid my lovely, generous parents back with my redundancy payout.”

After Alissa’s diagnosis, she was prescribed two months’ worth of daily Mesalazine enemas by her GP. She had a few minor gut symptoms whilst on these, but nothing too intense. Three weeks after she finished this medication, she had bleeding again.

"I went to the GP and they put me back on the same medication, though stated that the idea was that I would take it for a month or two, and then go back to being unmedicated,” Alissa explains. “So at this moment in time I am not on any medication or receiving any treatment for my ulcerative colitis.

“The charity Crohns and Colitis UK have been the most amazing source of information during a time of so many unknowns. I am aware of the expectation that having been diagnosed, I should be under the care of an IBD Team. Then, and only then, can my symptoms be properly assessed by a wide-ranging team of experts. Ulcerative colitis doesn’t only affect the gut, it can also cause a whole range of seemingly completely random symptoms.

“After a few months of new shoulder pain, it was only through reading the Crohns and Colitis UK website that I realised that joint pain could actually be linked to my ulcerative colitis.”

Alissa says the impact of her illness affects her daily - not just physically but mentally too. “I still don’t actually understand the condition I now have,” she explains. “After my diagnosis, I received very little information bar what I had already Googled for myself. My symptoms seemingly disappeared to a certain extent.

“But then sometimes I’ll get a little abdominal pain, or have diarrhoea, one time I had one day of bleeding again. Just one. What do I do with that? I have developed unexplained pain in my shoulder and wonder whether it is in fact linked to my ulcerative colitis. I occasionally have sudden waves of fatigue, maybe just for a day, or a few days, and think it's my ulcerative colitis, but then doubt myself.

“I honestly don’t know what is linked to my ulcerative colitis and what isn’t, and that has had a huge impact on my mental health. Last time I called my hospital to ask what the wait currently is for me to be put under the care of my local IBD Team and see a gastroenterologist for the first time since my colonoscopy, I was told it was 49 weeks from being referred. That means I won’t be seeing a specialist until at least May 2025, over a year after I started experiencing symptoms of active ulcerative colitis.

“The traumatic experience of the wait for my initial diagnosis and my honest held belief at that time that I was potentially dying has kicked off some really intense health anxiety for me. I know that ulcerative colitis causes a number of symptoms, including non-gut related ones, but without a specialist to guide me as to what is ulcerative colitis, and what isn’t, I find myself going down those same, now familiar spirals, convincing myself that every tiny symptom, new sensation or bump on my skin is something sinister.

“The affect on my mental health has been profound, and thankfully, I am due to start my first session of CBT for health anxiety tomorrow.”

Alissa hopes to raise awareness of the effects of ulcerative colitis, and to encourage others to call the charity if they have any symptoms. “I want people to realise that ulcerative colitis doesn’t just affect the gut,” she adds.

“Ulcerative colitis is also really different from person to person; so whilst one person’s main symptom might be diarrhoea, another’s might be feeling like you need to poo but not being able to. I also really want anyone out there who is newly diagnosed, or has had any related symptoms to check out the Crohns and Colitis UK website, or call them on their helpline; I cannot express just how impressed I have been with their resources.

“They even have resources for family members, or employers, so you can just send people a link all about your condition. I have a long wait ahead of me, and I can’t help but hope that the new government might be able to put in place some interim measures so that people who have a diagnosis but no real understanding or personalised treatment for their condition can be seen quicker.”