Patients with ulcerative colitis make visible in social networks their daily life suffering from ulcerative colitis
Summer Griffiths told her story with the goal of helping more patients. Photo: Taken from her instagram account @littlemisscolitis.
Ailish Evans and Summer Griffiths are best friends and they decided that we should all see something that many of us have never seen because it is often hidden.
They both have ulcerous colitis and they say they want to show that not only older people have colostomy bags, and that there is nothing to be ashamed of.
Both have had their colons removed and wear bags that collect waste from their digestive systems.
“When you have a bowel problem, it can be quite embarrassing, but we really need to put that aside and talk regarding it,” says Ailish, who lives in Corringham, 45km east of central London.
The 25-year-old suffered from intestinal problems for eight years before receiving a diagnosis in October 2020.
His colon, which is part of the large intestine, was so inflamed it was at risk of bursting and was removed just two weeks later.
“From the age of 16 I suffered from an upset stomach and had to plan all my days to know if there would be a bathroom nearby,” he recalls.
“I might never drink alcohol on a night out with friends because it really irritated me, so it was hard for me socially,” she adds.
Ailish says several doctors declined to investigate what was wrong with her because of her age and gender. “Because I’m young, they thought it was just period cramps or my hormones. It was very frustrating.”
Finally, he found a specialist who listened to his symptoms and diagnosed him ulcerous colitis. But the delay had big consequences.
“Because I had been ignored for so long, there was no other option for me other than surgery,” he says.
“That’s what made me want to raise awareness, because the earlier you catch it, the more options you have, like medication,” he says.
The surgery was performed via laparoscopy and wasn’t as scary as Ailish anticipated, who believes the benefits of having the ostomy bag far outweigh any negatives.
“My quality of life is so much better, because I’m not afraid of having to find a bathroom wherever I go,” she says.
“There are some things I can’t eat now, like beans, sweet corn, mushrooms, raisins, popcorn, and peanuts, because they are not easy to digest, but my boyfriend learned a lot of new recipes and he really takes care of me.”
It was his idea for Ailish to open her Instagram page, following friends and family asked for more information to understand what she was going through.
“I’ve gotten some comments like ‘you’ll never have a boyfriend’ and things like that, but obviously I already have one and it doesn’t bother me,” she says.
“I also get great feedback where people say they didn’t understand how the bags worked before, but now they do, and that makes it worth it.”
And it was through her Instagram page that she met one of her closest friends, Summer, who also has ulcerous colitis and had his colon removed.
The case of Summer Griffiths
Summer fell ill while at University in Newcastle. The 21-year-old had blood in her stool, stomach pains and went to the bathroom up to 30 times a day.
But doctors dismissed her symptoms, and it wasn’t until she returned home to Essex, England, that a specialist said she needed a colonoscopy, which later showed severe swelling.
He ended up in the hospital unable to eat or sleep as he was in a lot of pain. Summer had to take a year off from college and move back in with her parents.
Doctors said she needed to consider having a colostomy because medications were not controlling her condition.
“My reaction was to try and stop it. I said, ‘No, this isn’t happening, I haven’t even had this for a year and you’re trying to remove my intestine.'”
But most of his intestine was now scar tissue, and the colitis continually attacked. Doctors worried that it might explode.
Summer tearfully accepted that she needed surgery, but was terrified of living with an ostomy bag.
He posted a message on a Facebook forum for people with colitis asking if any other young people had undergone the operation. Ailish replied and started following her on Instagram.
“I asked him every question imaginable and thought, ‘This doesn’t sound as bad as I expected,'” he says.
After the surgery, Summer found that she had more freedom than before, not having to worry regarding where the closest bathroom might be.
She wore jeans for the first time in two years, which had previously been too uncomfortable for her, and found that she was able to eat and drink much more.
Summer decided to follow her friend’s path by creating her own Instagram page to chronicle her life with an ostomy bag. She hopes that she will help other people her age to be diagnosed more easily.
Many young people choose to hide their diagnosis because they feel ashamed and worry regarding being stigmatized, according to a study carried out in the United Kingdom.
But Ailish and Summer believe it’s best to be open and honest regarding the disease.
“Before I wrote my first post, I was very nervous and self-conscious. Having this illness kept me from doing so much for so long, but now I am living my life normally and I wanted to share it,” says Summer.
Both women receive questions from young people who have just been diagnosed and others who are regarding to undergo an ostomy.
“It’s really nice to be able to reassure them like Ailish reassured me,” says Summer.
“I’m just telling them that they can still live a really great life,” says Ailish.
What is the ulcerous colitis?
*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 immune system reaction, and something triggered in the environment
*About 15 out of 100 people with ulcerous colitis they may need surgery ten years following diagnosis.
*The intestine is brought to the surface of the abdomen and an opening is made for digestive waste to drain into a bag, known as a stoma or ostomy, rather than through the anus
consulted source here
