'I hid my symptoms out of embarrassment - then needed life-saving surgery'

A young woman who had to have her large intestine removed after masking her bowel symptoms for a year out of embarrassment has urged others not to do the same.

Alex Lyons was 21 when she started having to use the toilet more frequently and noticed blood in her stool.

She recognised they were symptoms of inflammatory bowel disease (IBD) as her twin brother Joe had just had bowel removal surgery at the time due to the chronic disease.

She said she saw the trauma it put her family through and "couldn't face the possibility of doing that to them again".

"I thought ignoring it would make it go away. I think being at uni at the time it was quite hard to talk to friends and family about it because I felt embarrassed," she added.

She was diagnosed with IBD last year and started treatment but last month was told it was not working and she was rushed into life saving emergency surgery.

Alex, from Armagh, said her brother also hid his symptoms for a year prior to his diagnosis.

She said they both have aggressive forms of the disease meaning surgery was probably inevitable.

Now 23, she said if she could go back in time she would shake her younger self and tell her to go to the doctor.

"I think I would've gone a little longer without losing my bowel had I gone to the doctor earlier," she said.

It is estimated half a million people in the UK have IBD. However, Alex and Joe are part of a growing number of young people who are being diagnosed with it.

A 2024 study by Southampton Children's Hospital found the number of children and young adults being diagnosed more than doubled in 10 years.

Alex has Ulcerative Colitis, which along with Crohn's disease are the most common forms of IBD.

According to the charity Crohn's & Colitis there are more than 17,000 people in Northern Ireland living with either form.

It estimates more than 200,000 people in the UK are living with a stoma - an opening on the abdomen which connects to the digestive or urinary system and allows waste to be diverted out of the body and into a bag.

Alex told Evening Extra she was "so thankful" to have received the life changing surgery which has left her with a stoma but admits it has been a hard adjustment.

"I'm still quite emotional every day trying to get used to it," she said.

"Even little things like looking in the mirror is a little bit tough. I've got a bag on my stomach, I've got a big scar.

"I empty the bag every four hours-ish, so I'll never be able to have a full night's sleep again.

"I love my sleep, so that's been tough enough. And food as well - I'll never be able to have some of my favourite foods."

She has urged anyone with symptoms to go and get checked by a doctor.

"I remember the first time I was asked to do a stool sample, I thought it was the end of the world," she said.

"No matter how embarrassing the symptom, no matter how tiny the symptom is go to the doctor."

• diarrhoea
• stomach pain or cramps
• blood in poo
• bleeding from your bottom
• fatigue
• losing weight without trying

The disease is distinct from irritable bowel syndrome (IBS) although some of the symptoms overlap.

A diagnosis of IBD is only made if there is inflammation in the bowels.

Alex said her brother Joe, who also has a stoma, has been guiding her through everyday life since her surgery and said he is her hero.

She has been documenting her experience on TikTok.

"I was so determined even going into surgery that I wasn't going to let this ruin my life," she said.

"I wasn't going to let this stop me from going outside, stop me from wearing my favourite clothes. I was posting on TikTok before, I wasn't going to let it stop me from doing any of that."