It’s estimated one in 500 people in the UK live with a stoma (or ostomy) - a surgical opening made in the skin as a way for urine and faeces to leave the body.
It often has a bag attached to it to collect the waste, which people then have to manually empty.
There are many reasons why a person might need one: they might have had cancer or a bowel obstruction, or they could be living with a condition like inflammatory bowel disease (IBD), Crohn’s disease or ulcerative colitis.
There are three different types of stomas: those which allow waste to leave from the intestines are called an ileostomy or colostomy, while a urostomy allows waste to leave the bladder.
Regardless of the type of ostomy a person has, it can be difficult to come to terms with this new addition to the body - especially when, as a society, we place so much value on appearance.
Many people with ostomies agree that greater awareness and understanding from the wider public is needed to help them feel more comfortable. To do just that, here are nine things they want you to know.
1. It can be hard to adjust to life with a stoma.
Fiona Munro had a stoma fitted after undergoing intensive treatment for ovarian cancer. She said that immediately after surgery it was hard to come to terms with: “It felt like the final shred of dignity I had left had been removed.
“I no longer had control over my bodily functions. In a ‘normal’ body you are able to control when you poo using the muscles in your anus. Your colon, however, doesn’t have muscles that you can consciously control. So if you have a stoma your body excretes waste whenever it wants. Any time. Any place. No warning. No control.”
But over time, things improved.
“Whilst it was hard to come to terms with at first, I began to realise that this was a result of life enhancing surgery,” she wrote in a blog post on HuffPost UK. “Would I, if given the chance, turn back time and say ‘no wait actually could you just leave that cancer in my bowel I’d rather not have a stoma’? Hell no!”
2. Travelling light is a thing of the past.
Paul Silver, 34, from Enfield, London, says there are certain things you begin to miss when you have an ostomy bag fitted, including being able to leave the house with just a wallet.
He said he has to carry spare items wherever he goes, “because you’re guaranteed the one time you forget, you’ll need it”.
“There are so many lotions, stickers, the bag itself - that it can be hard to keep up with them all,” he told HuffPost UK.
3. Going to the toilet is difficult, but facilities are slowly improving.
Caroline Richards is an ostomy campaigner living with a stoma in Wales. She’s been vocal about the lack of appropriate toilet facilities for people with a stoma, after she was forced to kneel on a dirty floor to change her bag.
In a blog post on HuffPost UK, she wrote: “Going to the toilet with a stoma means that I need enough space to be able to change my bag without having an accident. It means having some kind of clean surface that I am able to use all the accessories I need to change my bag. It means having somewhere to hang my clothes and luggage so that they don’t get soiled.
“Almost 1 in 500 people in the UK live with a stoma - yet most toilets in the UK do not meet their needs or requirements.
“Stories like mine are sadly all too common - the worry of going out and not knowing whether you will be able to find toilets that meet your needs limits many people with a stoma from being able to live a full and active life.”
Colostomy UK is campaigning to improve toilet facilities across the UK and recommends that toilets include a hook on the door for hanging up clothing and luggage, shelf space to change a stoma bag and a disposal bin so people with stomas don’t have to go into a public area to get rid of their ostomy bags.
It appears their efforts are paying off. Earlier this month, Sainsbury’s announced it would be making all of its toilets dementia and stoma-friendly, meaning toilet cubicles will be fitted with a shelf and a hook.
4. It can be very draining.
Paul Silver added that since he’s had a stoma fitted, he’s been constantly exhausted.
“Sometimes I get so tired, that I don’t know what I’m doing,” he explained. “I end up in a sort of half asleep half awake state. This is because I’ve got to get up every few hours to empty my bag. At least once or twice a week, I’ll also have to change my bag and sometimes have to change my bed, and have a shower.”
When it comes to changing the bag, the process can take Paul 30 minutes or more each night.
“It can frustrate you to tears,” he said.
“I had to change the position I slept in too, so as not to accidentally roll over or put too much weight on the bag.”
5. Stoma-related noises can be mortifying.
Ian Jackson, 56, from Northampton, had a stoma fitted in 2011 as part of treatment for bowel cancer.
He told HuffPost UK that stomas can sometimes make embarrassing noises and, as a result, urges others to be kind about it.
″A person with a stoma has no more control of when their stoma works or makes a ‘rude’ noise than a person without a stoma controlling when their tummy rumbles or makes a noise,” he explained.
“Having people hear these noises is one of the biggest initial fears of people living with a stoma due to the embarrassment it can cause. So please, if you do hear a strange or sometimes even loud noise from somebody’s tummy, don’t judge them. We can’t help it.”
6. Finding support is crucial.
Irene Constable, 71, from Oswestry in Shropshire, acknowledged that living with a stoma can be difficult, but she said support groups can seriously help.
“Some people never go out once they have a stoma because they worry that their bag will leak and they will smell,” she told HuffPost UK. “Some feel isolated (I hear things like ‘I did not know there were other people with stomas’). Yes, it does take time to settle after surgery, but with practise and familiarity comes the confidence to continue with your life.”
For people who are finding the transition difficult, she recommends joining stoma support groups.
“There are many around the country and you will be amazed how many other ostomates there are out there,” she explained. “Talking to others will give you more confidence and you will learn that there are many things you can still do.”
7. Having a stoma doesn’t make you any less gorgeous.
Nicola Dames, 40, lives with a stoma and subsequently has become the director for Vanilla Blush, which sells high-waisted lingerie for people with stomas.
She told HuffPost UK: “We all poo and we all pee, I happen to do the same in a bag! (Well, what I mean is that my poo collects in a bag. I pee as an average woman pees.)
“If you think having a stoma bag will stop you having a relationship, getting married and having kids, then the chances are that the problem is not your stoma, but your thinking.
“Having a stoma doesn’t make you any less gorgeous.”
8. It shouldn’t stop you from doing the things you love.
Abigail Brown has high praise for her stoma: “I choose to wear mini Coloplast bags and they are brilliant. It’s so nice not to panic anymore about needing the toilet - sense of urgency being one of the main symptoms before my operation last year.
“The choice of bags that we have access to is amazing, so you can find one that is comfortable and discreet. I often genuinely forget I even have one.”
Her bag also doesn’t stop her from doing the things she loves.
“After a long recovery period (about five-and-a-half months) with walking as my primary activity I was able to return to the gym, taking it carefully,” she told HuffPost UK. “I’ve now returned to a full schedule and I am weight training and doing fitness classes, plus running.
“I’m not cycling due to the operation but have a follow-up in January with the colorectal team to learn more about when I might be able to resume that.”
9. Ultimately, stomas save lives.
Davina Jowett credits her stoma for saving her life following a bowel cancer diagnosis, but acknowledges that it didn’t stop her from feeling uncomfortable for many years after it was fitted.
“I remember waking up after the operation and not wanting to look,” she wrote in a blog post on HuffPost UK. “I felt disgusted, unattractive and alone. I broke down and fell to pieces. The thought of having to clean it, touch it, look at it, made me feel sick. How could I be so young and have to go through this?”
Over time Davina adjusted to her situation and began to feel less self-conscious - she even took part in a fashion catwalk. Now she says we need to remove stigma surrounding stomas to help others feel comfortable in their own skin.
“Each year, too many people who are told they need a stoma think they can no longer go on living a normal life,” she wrote. “They think having a stoma bag means they can no longer enjoy their social life, the activities they once loved or the clothes they used to wear.
“We still have a long way to go, but hopefully soon more people will realise that having a stoma is not just life-changing, it is live-saving.”