‘I went to the bathroom 30 times a day before surgery’: young women who fight prejudice with ostomy bags

More than 400,000 people in Brazil have an ostomy bag, but many of us have never seen one because they tend to be hidden. In the UK, best friends Ailish Evans and Summer Griffiths decided to change that.

The duo, who have ulcerative colitis, say they want to show that it’s not just the elderly who have these pouches — the main ones are colostomy, ileostomy and urostomy bags — and there’s nothing to be ashamed of.

Both have had part of their large intestines removed and use pouches that collect waste from their digestive systems.

“When you have a problem with your gut, it can be quite embarrassing, but we really need to put the shame aside and talk about it,” says Ailish, who lives in Corringham.

The 25-year-old suffered from intestinal problems for eight years before being diagnosed in October 2020.

His large intestine was so inflamed it was in danger of bursting. Her colon was removed just two weeks later.

“Since I was 16 years old, I suffered from a lot of stomach ache and I had to plan all my days around having a bathroom nearby,” she says.

“I could never drink alcohol going out at night with friends because it really made my condition worse, which hurt me socially.”

Ailish says she went to several doctors, but they got the diagnosis wrong, in part because of her age and gender. “Because I’m a young woman, they thought it was just period pains or the consequences of hormones. It was so frustrating.”

She eventually found a specialist who diagnosed her with ulcerative colitis. But the delay in diagnosis had major consequences.

“Because I was ignored for so long, there was no option for me other than surgery,” she says. “That’s what made me want to raise awareness, because the sooner you detect [o problema]the more options you have, like medications”.

What is ulcerative colitis?

• Ulcerative colitis causes inflammation and ulceration of the inner lining of the colon and rectum (large intestine);
• Symptoms include diarrhea, often with blood and mucus, cramping, tiredness, loss of appetite and weight;
• It’s one of the two main forms of inflammatory bowel disease — the other is a condition known as Crohn’s disease;
• Researchers believe that the problem is caused by a combination of factors such as genetics, an abnormal reaction of the immune system and something triggered in the environment;
• About 15 out of 100 people with ulcerative colitis may need surgery 10 years after diagnosis;
• The intestine is brought to the surface of the abdomen and an opening is made so that digestive waste can drain into a pouch, known as an ostomy pouch, rather than through the anus.

Source: Crohn’s and Colitis UK

The surgery wasn’t as scary as Ailish had hoped. She believes the benefits of having the ostomy bag far outweigh the negatives.

“My quality of life is much better, because there’s no fear of having to find a bathroom everywhere I go,” she says.

“There are some things I can’t eat right now, like peas, sweet corn, mushrooms, raisins, popcorn and peanuts, because they’re not easy to digest — but my boyfriend learned a lot of new recipes and he takes care of me.”

He was the one who came up with the idea for Ailish’s Instagram page after friends and family kept asking for more information to understand what was going on.

“I got some comments like ‘you’ll never get a boyfriend’ and stuff like that, but obviously I already have one and I don’t mind it.”

“I also get great comments where people say they never understood how exchanges worked before, but now they do. It makes it all worth it.”

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

Summer fell ill while at university in Newcastle. The 21-year-old suffered from bloody stools, stomach pains and went to the bathroom up to 30 times a day.

But doctors ruled out her symptoms and it wasn’t until she returned home to Braintree that a specialist told her she needed a colonoscopy because of severe inflammation.

She was hospitalized and was unable to eat or sleep as she was in so much pain. Summer had to take a year off from university and move home with her parents.

Doctors recommended that she consider having stoma surgery because medications were not controlling her problem.

“My reaction was denial. I said ‘this isn’t happening, I haven’t had this in a year and you’re trying to remove my bowel’.”

But the colitis continued to attack his intestines and the doctors were worried he might explode. Summer tearfully accepted that she needed the operation, but was terrified of living with an ostomy bag.

Quality of life

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

“I asked her every imaginable question and thought ‘this doesn’t look as bad as I expected,'” she says.

After the surgery, Summer found she had more freedom than before, not having to worry about always finding the closest bathroom.

She wore jeans for the first time in two years, which were previously very uncomfortable, and found she could eat and drink a lot more.

Summer decided to follow her friend’s lead by creating her own Instagram page to chronicle her life with an ostomy bag. She hopes this will help others her age to be diagnosed more easily.

Many young people choose to hide their diagnosis because they feel embarrassed and worried about being stigmatized, according to one study.

But Ailish and Summer believe it’s best to be transparent about the condition.

“Before writing my first post, I was very nervous and embarrassed. This illness has kept me from doing so much for so long, but I’m living my life normally now and I want to share that,” says Summer.

Both receive questions from young people who have just been diagnosed and others about to undergo surgery.

“It’s great to be able to reassure them the way Ailish reassured me,” says Summer.

“I tell them they can still live a very good life,” adds Ailish.