Essex women with stoma bags hope to break stigma of condition
They tell us if they can help just one person it'll be worth it
Last updated 20th Apr 2022
A woman from Essex who had to go to the toilet up to 30 times a day is sharing how a stoma bag changed her life, in the hopes of breaking the stigma around her condition.
Summer Griffiths, 21, from Braintree, was diagnosed with ulcerative colitis, a condition where the colon and rectum become inflamed, during university.
She experienced stomach pains, blood in her poo, and needing to go to the toilet dozens of times each day, however doctors initially dismissed these symptoms and it was only after she got a colonoscopy that she was diagnosed.
Having tried countless medicines and treatments, doctors told Summer she'd need an operation to remove her bowel and put in a stoma, which has a pouch placed over it to collect waste which would previously have been excreted through the bowel and colon: "They'd said about having a stoma before when I first got diagnosed because the medication was failing quickly but I said 'I'm not letting you take my whole bowel out - I've not had this condition for long and you're trying to do major surgery!'
"It was all very new and scary."
Summer says she was nervous about living with a stoma bag but had to go for the procedure as no other treatment was working.
She's actually found it massively improved her quality of life: "Nothing was working, I had no quality of life and it's completely changed my life.
"I was going to the toilet 30 times a day, nothing but blood was coming out. I wasn't eating because it was too painful, I had terrible stomach pains and lost lots of weight.
"It was just awful and I didn't want to leave the house because I was too ill.
"Now it's just amazing - I've not been this healthy, having had my surgery, since way before I got diagnosed."
It also led to her meeting a close friend, Ailish Evans, 25, from Corringham, who also has a stoma bag, after Summer posted in a Facebook group for people with colitis looking for other young people who'd experienced the operation and Ailish responded.
Ailish was diagnosed with ulcerative colitis in October 2020, having suffered with bowel problems for eight years previously.
Before being diagnosed, she says she was regularly dismissed by doctors: “The doctor wouldn’t really know what was wrong with me. I think because I was sixteen when it first started, they thought I was young, that maybe I had a food intolerance or hormones… I used to get palmed off a lot.
She says doctors need to take young women’s concerns seriously: “It's frustrating because I think you know your own body. You know when you don't feel well and you know when something's not right.
I can see what they said about wondering if it was my period, but the issue wasn't in the same area. Not everything can be blamed on periods, and because of my age, they just tried to say I’d grow out of it, which is actually really bad mindset for a professional to have!
“I'm just glad I went and got a second opinion because I think I would have still been going around in loops or it would have got to the stage where my bowel would have probably ruptured because it was just left.”
After being diagnosed, within two weeks, she’d had her colon removed as it was so inflamed, it may have burst if left in. Like Summer, she says the stoma bag gave her a new lease of life: “I’m so much healthier now, it's like a whole new life.
“Some people have the idea that having a stoma is life ending and you can't do anything, but I'm still living life to the fullest. I'm back at work, I can drive, I still go out with my friends.
“It's really life changing not having to worry about finding a toilet to go out and about.”
By raising awareness, she hopes others will be able to recognise the symptoms of the condition earlier: “I'm quite happy with my stoma - I wouldn't change it, but there are some days I do wonder if they had investigated it properly whether that would mean it could have been treated with medicine.
“I can't say that I might not have ever had a stoma, I might have needed one at some stage, but I might have been able to prolong the process if it was treated properly. That’s why I’m so vocal about the condition.”
Both Summer and Ailish now run popular Instagram pages, where they share their day-to-day experiences with a stoma bag, to help others going through the same thing feel less alone.
Summer says it helps her feel part of a community: "Some people like me have pages and talk about it very openly and others don't and still message me just to say 'I've got this' or 'how do you deal with this?'
"It's so good to communicate with people with shared circumstances. Before, I thought I was the only person with it and no one really understood how it was affecting me.
"When you're able to talk to other people and see that it affects them just as much as you, it's so comforting."
She hopes her page will also educate people and remove the stigma around her condition: "I just thought if I can help just one person then it will be worth it, like how Ailish helped me.
"People don't know enough about it and think I'm too young to have it.
"They don't understand what it is, what it's about and how it impacts people, so I just thought, if I can try and help raise a little bit of awareness and help anyone going through something similar, then I'll have done something good."
She says medical professionals have even messaged her, saying her page is useful: "I've had quite a few nurses message me on Instagram saying that my page has really helped them because they don't get training on everything, so it's even helping people in healthcare to treat their patients better."
Ailish feels much the same, and is happy to help others who might have questions: “I made a page on Instagram because I thought if people were genuinely interested, they could follow it, and so could the nosy people who want to know but don’t want to ask.
“There’s also people who don’t want to ask because they don’t want to be offensive, but I don’t find it offensive – it’s a common thing and if people are too shy to ask, people can just look at my Instagram!”