I bled for a year because doctors said I was ‘too young’

‘What brings you in today?’ the doctor in A&E asked as I walked behind a flimsy blue curtain. 

‘Well… I’m bleeding out of my bottom when I go to the loo, and I don’t think that’s normal,’ I answered, scared and embarrassed. 

It was 2021, and I was 20. Initially, I’d put the blood down to having Ehlers-Danlos Syndrome (EDS), which means my skin can tear easily. 

But as the symptoms worsened, I knew something was wrong. And with a six-week wait for my GP, A&E seemed like my only option. 

Except, I was soon made to feel like I was wasting their time.

After not one, but two pregnancy tests, the doctor did a rectal examination. ‘I can’t see or feel any haemorrhoids, but I think that’s all it is,’ he said, adding that they were ‘typical’ for someone my age.

He dismissed me soon after – telling me that, if my symptoms continued for a year, then I’d be warranted to have further investigation. 

That I was ‘far too young’ to have anything serious. 

I felt like I’d just wasted everyone’s time. So, I attempted to carry on as normal – but the bleeding didn’t go away. 

It took me two years to be diagnosed with severe ulcerative colitis (pancolitis), also known as IBD, which meant that my large intestine was dangerously inflamed. 

Despite repeatedly telling doctors that something was wrong, I was consistently dismissed. It felt like no matter where I turned, nobody believed me.

It nearly cost me my life more than once.

I’ve always had a funny stomach. I wouldn’t go to the toilet for days when I was little – then, suddenly, I’d struggle to make it on time.

My symptoms eased during my teens – but in 2020, aged 19, they came back with a vengeance. Then, they steadily got worse.

After what the A&E doctor said, I tried to ignore my symptoms, but I was bleeding the whole time.

By the end of 2021, my bowels were pretty incontinent. I was having accidents, together with stomach cramping alongside the bleeding.

I’d wake up desperate for the toilet in the night. It would be like somebody had flicked a switch and I had to go. 

I had no control, so as a 23-year-old, I was confined to my house, stuck wearing adult nappies. 

I couldn’t sleep, couldn’t eat, couldn’t socialise – it took over my life. 

Throughout the journey to getting diagnosed, I was reminded by medical professionals that I was ‘too young to be sick’, and that bad things don’t happen to people my age. 

But after pushing for help, in April 2023, my GP begrudgingly agreed to put me through for various tests, initially to look for cancer, but soon widening this to look for bowel disorders. My results showed severe inflammation in my stool, so I ended up having a CT scan. 

‘You have extremely severe ulcerative colitis – your entire colon is ulcerated and inflamed,’ they told me.

‘We can’t normally see it on a CT scan, but yours lit up like a Christmas tree.’ I can’t explain the relief I felt knowing I wasn’t making my pain up. 

I was immediately put on steroids and given iron infusions due to the anaemia from bleeding for so long. 

For months, I was constantly tapering doses of steroids. They didn’t heal my bowel, but simply relieved my symptoms. 

Except, every time I’d start to get better, doctors would try to take me off of them and I’d end up horribly sick again. 

Eventually, after six months of medication and not getting anywhere, I’d had enough. I sought a second opinion and they quickly confirmed that I had a severe case of IBD and needed immunosuppressants.

These drugs are strong derivatives of chemotherapy, which caused my hair to fall out and my skin quality to plummet, all while doctors told me that they’d start to work ‘after my next dose’. In the end, I was so ill that my next dose never came.

In February 2024, I developed what I thought was a winter vomiting bug. I ended up having sickness and diarrhoea non-stop for over three weeks.

Finally, I took myself to A&E on the grounds of needing fluids and nutrition, convincing myself I’d be in for a night and then be on the road to recovery. 

Except, on admission, my heart rate was 170 beats per minute. ‘You’re about to have a heart attack,’ a doctor said. 

I was rushed to resuscitation and a team worked on resetting my heart. Hours later, my heart was brought back into a safe rhythm. 

In the days that followed, the hospital became my second home. I had an internal examination that discovered my colon was completely shredded. 

It had quite literally started to tear itself apart, and my ulcerative colitis had almost destroyed my bowel. 

I was given huge doses of immunosuppressants and prescribed a type of drug called a JAK inhibitor. It was essentially the last stage of treatment doctors could give me – they were doing everything they could to see if my bowel could be healed enough to live with.

Except, the tablets came out whole in the toilet – my body had stopped absorbing all food, medication and liquid.

Three weeks into my hospital stay at this point, I remember lying in my bed, wondering if I’d ever be able to eat again. 

Within a couple of days, a popping sensation in my side, followed by dozens of visits to the toilet confirmed the worst. My colon perforated and I developed sepsis. 

Lying in bed in agony, boiling hot to touch, but shivering with my teeth chattering, was a feeling I’ll never forget. 

I was screaming for help and morphine, and I ended up having to drag myself up the corridor on my hands to the nurses’ station, screaming for a surgeon.

At last, nurses found an intestinal failure surgeon and I was taken into theatre. I woke up about six hours later in the high-dependency unit.

Due to my surgery being an emergency, I had a midline incision, which meant I was cut from my ribs all the way down to my navel. 

I also had two stoma bags: one is for the main stoma output, and the other is called a mucus fistula, for when the body sends mucus to the remaining colon to try and clean it out. 

Recovery was slow, and I was in hospital for 10 days after my surgery, but once I started to move around, things eased.

I did everything I could to embrace my stoma, knowing that without it, I wouldn’t be here.

But between the incision, feelings of nausea and seeing something that is alien sticking out of you, it took me several days to get to grips with it.

Now, it’s second nature – and the difference in how I feel is like night and day. 

Within two weeks of leaving hospital, I was able to eat out of the house. I could visit friends without having an accident. I’m a lot closer to being myself again, but I’m not there yet.

I can’t believe that I was delayed getting help for my condition simply because of my age and the perception that young people can’t be ill.

I don’t regret having my stoma surgery, by any means – but things might not have been so severe if my concerns had been heard and I was believed much earlier.

If something isn’t right, speak up. You know your body better than anyone, and if you’ve got a gut feeling, it’s telling you for a reason. 

My story isn’t unusual, but it should be the exception, not the norm.

As told to Izzie Price

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