Ulcerative colitis: 'I was going to the toilet up to 30 times a day'

About one in every 500 people in the UK have a stoma bag but many of us have never seen one because they are often hidden away. Best friends Ailish Evans and Summer Griffiths decided to change that.

The pair, who have ulcerative colitis, say they want to show it's not just older people who have colostomy pouches, and there is nothing to be ashamed of.

Both women have had their colons removed and wear bags which collect waste from their digestive systems.

"When you've got a problem with your bowel it can be quite embarrassing but we really need to put that aside and talk about it," says Ailish, who lives in Corringham, near Basildon.

Ailish suffered with bowel problems for eight years before she was diagnosed with ulcerative colitis

The 25-year-old suffered with bowel problems for eight years before she was diagnosed in October 2020.

Her colon, also known as the large bowel, was so inflamed there was a risk it might burst. Her colon was removed just two weeks later.

"From the age of 16 I suffered from a really upset tummy and had to plan all my days out around whether I knew there would be a toilet close by," she says.

"I could never drink alcohol on a night out with friends because it really aggravated me so it was difficult for me socially."

Ailish says she was dismissed by several doctors because of her age and gender. "Because I'm a young girl, they thought it was just period pains or my hormones. It was so frustrating."

She finally found a specialist who listened to her symptoms and diagnosed her with ulcerative colitis. But the delay had big consequences.

"Because I had been left for so long, there was no other option for me apart from surgery," she says.

"That's what made me want to raise awareness, because the sooner you catch it the more options you have, like medication."

What is ulcerative colitis?

• Ulcerative colitis causes inflammation and ulceration of the inner lining of the colon and rectum (the large bowel)

• Symptoms include diarrhoea, often with blood and mucus, cramps, tiredness, loss of appetite and weight

• It is one of the two main forms of inflammatory bowel disease - the other is a condition known as Crohn's disease

• Researchers believe it is caused by a combination of genetics, an abnormal reaction of the immune system and something triggered in the environment

• Around 15 in every 100 people with ulcerative colitis may need surgery ten years after diagnosis

• The intestine is brought to the surface of the abdomen and an opening is made so that digestive waste drains into a bag, known as a stoma, rather than through the anus

Source: Crohn's and Colitis UK

The surgery was done via keyhole and was not as scary as Ailish anticipated. She believes the benefits of having the stoma bag far outweigh any negatives.

"My quality of life is so much better, because there's no fear about having to find a toilet everywhere I go," she says.

"There are some things I can't eat now like peas, sweetcorn, mushrooms, raisins, popcorn and peanuts, because they're not easy to digest - but my boyfriend has learnt lots of new recipes and really looks after me."

It was his idea for Ailish to start her Instagram page, after friends and family kept asking for more information to understand what she was going through.

"I've had some comments like 'you'll never get a boyfriend' and things like that, but I obviously already have one and I'm not fazed by it.

"I also get great comments where people say they never understood how the bags worked before, but now they do, and that makes it worthwhile."

Summer suffered blood in her poo, stomach pains and was going to the toilet up to 30 times a day

And it was through her Instagram page that she met one of her closest friends, Summer, who also has ulcerative colitis and has also had her colon removed.

Summer fell ill while she was at university in Newcastle. The 21-year-old suffered blood in her poo, stomach pains and was going to the toilet up to 30 times a day.

But doctors dismissed her symptoms and it was only when she returned home to Braintree in Essex that a specialist said she needed a colonoscopy, which showed severe inflammation.

She ended up in hospital unable to eat or sleep, as she was in so much pain. Summer had to take a year out of university and move home with her parents.

Doctors said she needed to consider having stoma surgery because various drugs were not getting her condition under control.

"My reaction was to shut it down. I said 'no that's not happening, I've not even had this a year and you're trying to remove my bowel'."

But the majority of her bowel was now scar tissue, and the colitis was continually attacking it, with doctors concerned it could explode. Summer tearfully accepted she needed to have the operation, but was terrified about living with a stoma bag.

She posted on a Facebook forum for people with colitis asking if any other young people had been through the operation and Ailish replied and she started following her on Instagram.

"I asked her every imaginable question and I thought 'this doesn't sound as bad as I was expecting,'" she says.

Ailish (left) and Summer want to reassure other young people that you can still live a great life with a stoma bag

After surgery, Summer realised she had more freedom than before, without having to worry where the nearest toilet might be.

She wore jeans for the first time in two years, which were previously too uncomfortable, and found she was able to eat and drink much more.

Summer decided to follow her friend's path in creating her own Instagram page to chronicle her life with a stoma bag. She hopes it will help others her age get diagnosed more easily.

Many young people choose to conceal their diagnosis because they feel embarrassed and are concerned about being stigmatised, a study found.

But Ailish and Summer believe it's best to be open and honest about the condition.

Ailish and Summer want to reassure other young people with stoma bags that they can live a normal life

"Before I wrote my first post, I was so nervous and self-conscious. Having this illness stopped me from doing so much for so long but I'm just living my life normally now and I wanted to share that," Summer says.

Both women get questions from young people who have just been diagnosed and others about to go through stoma surgery.

"It's really nice to be able to reassure them like Ailish reassured me," Summer says.

"I just tell them they can still live a really great life," Ailish adds.