Woman told she’d die aged 20 shares bowel disease warning signs to look for
'I was rushing to the toilet 30 times a day.'
Billie Anderson was just 19 when she began rushing to the toilet 30 times a day with blood in her stool.
For weeks, she ignored symptoms, which turned out to be the warning signs of a life-threatening bowel condition.
‘I just made up my mind I was fine because the doctor had said I was fine, and I decided to ignore the fact that I was still finding blood every 10 minutes,’ said Billie.
In late 2017, at 5ft 2ins tall, Billie’s weight plummeted to five stone, her resting heart rate reached 140bpm and she was warned she would die ‘within a few months’ if she did not undergo surgery to remove part of her bowel and be fitted with a stoma bag – which she did in January 2018.
Billie had ‘ignored’ her symptoms until they became excruciating and her father took her to A&E and, after doctors thought the problems stemmed from iron deficiency or bowel cancer, a gastroenterologist diagnosed her with ulcerative colitis — long-term condition where the colon and rectum become inflamed.
Now, the 27-year-old says she wishes she had sought help sooner and is urging people to see a doctor if they face similar issues.
Billie, who lives in London with her boyfriend, Marcus, 27, said: ‘I really do believe that if I hadn’t been so afraid of the symptoms I’d been experiencing and I’d seen a doctor sooner, then I don’t think I would be in the position I’m in now.
‘Just getting diagnosed early, getting it under control and seeing a professional is so important because I lost years of my life.’
Billie first started experiencing symptoms after she had moved from her hometown, Hemel Hempstead, Hertfordshire, to Portsmouth for university.
She said: ‘At first I was just a bit under the weather and groggy, but it didn’t take long to go from experiencing a bit of bloating to noticing blood in my stool.’
Billie searched her symptoms online and was ‘horrified’ to see serious illnesses like bowel cancer being listed, so she pretended she wasn’t ill.
She said: ‘I left it for three months or so but the bleeding would not stop, so I went to see my GP.
‘Without any tests, she told me that she thought it was bowel cancer.
‘I laughed at first but her face was stone cold and I realised this was not a joke.’
Referred to a specialist, Billie’s symptoms were not considered to be signs of cancer and while she was still experiencing pain and blood in her stool, she recalled ‘ignoring’ the issues.
But when Billie returned to university for her second year her health ‘hit the floor’, with the student going from ‘functioning’ to being unable to walk or hold a conversation within a month.
She said: ‘I was rushing to the toilet 30 times a day, I wasn’t really eating or drinking anything because it was just so painful and I was telling my parents that I was fine the whole time.
‘My dad eventually got fed up with me lying to him and he drove to Portsmouth and took me to A&E.’
Billie added: ‘The doctor said that it was probably iron deficiency linked to my menstrual cycle and gave me a prescription for iron tablets, but the tablets caused havoc with my stomach and I cannot even begin to describe the pain I felt when I took them.’
Seeing that his daughter was still in a lot of pain, Billie’s dad sought a second opinion and, within days of her trip to A&E, the then-20 year old was seen by a gastroenterologist who diagnosed her with ulcerative colitis.
Over the following few months, Billie was in and out of hospital as she battled painful flare-ups and ‘despite being on medication, [she] was still rushing to the toilet 20 times a day and couldn’t put any weight on’.
‘My joints started to swell, I had severe acne and I was losing my hair, which was a bit of a shock,’ she said.
In December 2017, Billie’s doctor warned her that she would die in the next few months if she did not have surgery to remove part of her bowel and have a stoma bag fitted.
She said: ‘I genuinely don’t know how I got through Christmas that year. I remember just camping down in the bathroom, I set up my duvet in there and just had to get through it before my surgery.’
On January 2, 2018, Billie underwent the six-and-a-half-hour operation to remove her large intestine and be fitted with a stoma bag before spending three days in intensive care.
Ulcerative colitis is a long-term condition where the colon and rectum become inflamed.
The colon is the large intestine (bowel) and the rectum is the end of the bowel where poo is stored.
Small ulcers can develop on the colon’s lining, and can bleed and produce pus.
The main symptoms of ulcerative colitis are:
- Recurring diarrhoea, which may contain blood, mucus or pus
- Tummy pain
- Needing to poo frequently
You may also experience extreme tiredness (fatigue), loss of appetite and weight loss.
The severity of the symptoms varies, depending on how much of the rectum and colon is inflamed and how severe the inflammation is.
Some people may go for weeks or months with very mild symptoms, or none at all (remission), followed by periods where the symptoms are particularly troublesome (flare-ups or relapses).
During a flare-up, some people with ulcerative colitis also experience symptoms elsewhere in their body; which are known as extra-intestinal symptoms.
These can include:
- painful and swollen joints (arthritis)
- mouth ulcers
- swollen fat under the skin causing bumps and patches – this is known as erythema nodosum
- irritated and red eyes
- problems with bones, such as osteoporosis
She said: ‘Life after surgery was a mental and physical adjustment because I had been so used to the feeling of pain and my stomach being stressed all the time, and the mental impact of that was enormous.
‘Obviously, it’s such a massive surgery, I wasn’t jumping out of bed but I remember just feeling like that sensation I’d had that felt like someone was almost digging their nails into my stomach, was gone as soon as I’d had the operation.
‘I was wheeled into hospital in a wheelchair and I was able to walk out eight days after having my large intestine removed.’
Since the surgery, Billie has made the decision to keep her stoma bag permanently because she ‘wouldn’t be alive if [she] hadn’t gotten it’.
‘I think that, although it’s not an easy thing to live with, especially quite young, I’m incredibly grateful for the fact that I’m still alive,’ she said.
‘I hope to encourage others to seek medical help if they notice something is wrong. Don’t let it get to the point where you’re in agony before you get the help you need.’
Sarah Sleet, CEO of charity Crohn’s & Colitis UK, said: ‘There are more than 500,000 people living with Crohn’s and Colitis in the UK and our research tells us that those aged 18-34 are the most likely group to ignore the warning signs.
‘As Billie’s story shows, waiting a long time to find out what’s going on can lead to major complications. There’s nothing to be embarrassed about: the doctor will have seen it all before.’
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