A Crohn's patient has raised awareness of the realities of living with the condition - including using a colostomy bag - by writing on Facebook about how people are insensitive towards those with the “invisible disease”.
Ste Walker, 24, from Halifax, west Yorkshire, hit back at those who don't believe he as a “major illness”, and urged people to be more understanding alongside a photo of his colostomy bag.
It is estimated that around 1 in 500 people in the UK currently live with a colostomy, ileostomy or urostomy. Despite it being a common condition, many people are confused or have misconceptions about what it is like to live with a stoma.
A stoma is an opening made on the side of the abdomen through which bodily waste passes. People with this condition wear a stoma bag to collect any bodily waste discreetly.
There are three main types of operation: a colostomy, where the colon is diverted, an ileostomy from the small intestine, and a urostomy, which is a stoma for urine. Of the three, colostomies are the most common with around 70,000 people in the UK affected.
A colostomy can be an embarrassing condition to talk about but improved public awareness will help increase the understanding and treatment of the thousands of "ostomates" - the name for someone with a stoma - across the country.
Does having a stoma hurt?
As there are no nerve endings in a stoma it should not hurt at all. You might feel a sensation when it is active but it does not hurt.
Additionally, you cannot control when your stoma is active as it has no muscle. Fortunately, modern stoma bags are very discreet so there is no way for a stranger to tell whether you are passing bodily waste.
What can you eat?
Theoretically, whatever you like! Many people assume there is a concrete list of what you can and can’t eat with a colostomy, but each person is different and some people may have issues with certain foods. As a general rule, if something caused you bowel problems before you had a stoma, it will probably do the same after you have one.
How do you change your stoma bag?
An old bag is removed by peeling it off from the stoma, just like a sticking plaster, then cleaned around with water. A new bag can then be applied. Many people like to shower with the bag off as soap and shower gel do not hurt the stoma.
How often you change your bag differs from person to person, and what product you use. People living with an ileostomy may find that they have a more frequent output compared to a colostomy.
Why do you use disabled toilets?
Although people with a colostomy have no issues with mobility, they are entitled to use accessible toilets. Most loos across the UK don’t meet the requirements of ostomates.
A sanitary bin and sink in the cubicle itself, as well as increased surface space, can make changing a bag significantly less difficult. Additionally, there can be emergency situations where a bag may need to be changed to avoid spillage or leakage.
How do you have sex?
The same way as anyone else! Having a stoma should not have any impact on your ability to have or enjoy sex.
Sadly, some people with a stoma feel uncomfortable being intimate with someone else. In a recent Colostomy Association survey, over 1 in 3 respondents said that having their sex life has been "somewhat" or "greatly" affected since they had their stoma.
What happens to your rectum after you have a stoma?
As a stoma is created by diverting your bowel, some people with an ostomy no longer pass waste through their rectum.
Some people will still have their bottom and rectal stump in place. Others will have had it all removed as part of their surgery. Amongst ostomates removal of the rectum and anus is often referred to as a “Barbie Bum” as, like the doll, they no longer have an opening in their bottom
Do you pass wind from your stoma?
The stoma acts like a rectum, so wind will pass through your stoma. Additionally, as it has no muscle you cannot control when you might break wind.
Many ostomates worry that about the noise their stoma might make, but in most cases you are the only person who notices it.
If you or someone you know has or is about to have a stoma then call the Colostomy Association’s 24/hour helpline on 0800 328 4247 for free and confidential information, advice and support.
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