Stoma: Teen's 'period pain' turn out to be ulcerative colitis

Sophia before and after Stoma
Sophia Haden, from Swansea, had a stoma fitted after being diagnosed with ulcerative colitis [BBC]

A teenager will have a stoma bag for the rest of her life after what she thought was period pain turned out to be ulcerative colitis (UC).

Sophia Haden, 18, said she had to go to the toilet 20 times a day and couldn't get out of bed before getting a stoma.

UC causes inflammation and ulceration of the inner lining of the colon and rectum.

Sophia, from Swansea, said: "I couldn't move more from the bed. I was in so much pain."

She will undergo a second operation this summer after she was diagnosed with the condition last year.

"At first I thought it was period pains," Sophia said.

"But I would go to the toilet about 20 times a day… for 20 minutes.

"Paracetamol didn't help. The only thing that helped was morphine in the hospital."

Sophia says she sometimes feels "chuffed" but other times as if her "life is over" [BBC]

She had an operation in June 2023 to remove part of her large intestine, which meant she had a temporary stoma bag.

But her symptoms then worsened again.

"That's why I'm going to have the next operation in the summer," she said. "My stoma will be permanent. That is obviously a big thing.

"In terms of mental health, there are some days where I'm chuffed that I've got the bag, but some where it feels like life is, well, just over."

What is the ulcerative colitis?

  • Ulcerative colitis is a long-term condition, which affects the large intestine;

  • Small sores may develop, releasing blood;

  • It can affect people in different ways, but the most common symptoms are diarrhoea, bleeding, stomach pains and extreme fatigue;

  • Medicine can alleviate the condition, but for many, surgery is necessary.

Although Sophia was diagnosed quickly, there are many who have to wait a long time, according to the Crohn's & Colitis UK charity.

More than 26,000 people live with the condition in Wales.

Sophia received a temporary stoma bag in 2023 after part of her large intestine was removed [BBC]

"It makes me sad that so many people wait so long for treatment and diagnosis," Sophia added.

"I received treatment and a fairly conclusive diagnosis because my condition was so bad at the time.

"But if I had been in that situation - waiting two, three years for an operation - I genuinely don't believe I would have been able to do it.

"It's a condition that takes everything out of you. You're so tired all the time, you're losing so much blood."

Since Sophia was diagnosed she has been raising awareness about her condition on social media [BBC]

Since Sophia was diagnosed she has been raising awareness about her condition on social media, admitting she had "no idea what it was" before.

"That's part of the problem. There is not much awareness," she said.

"What I would like to do is show people how I am now, and then how I am with the stoma. I'm still the same person.

"It scares me, but I'm just trying to remember that this stoma saved my life."

The Welsh government said it was working with the NHS to improve services for people with Inflammatory Bowel Disease (IBD).

"This includes introducing a national pathway for diagnosing IBD to all health boards in Wales, developing significant additional endoscopy capacity to support research into a disease such as IBD, and establishing new national leadership arrangements for improving IBD services as part of the NHS executive."