Crohn's Awareness Week: Six myths about colostomy bags that need to be stopped

From smells to swimming

Bill 1014 would force people to use a bathroom depending on their gender at birth (WestEnd61/REX Shutterstock)

Despite improved public awareness, many myths persist about what it means to live with a colostomy bag. These misconceptions make it difficult for ostomates - a person with a stoma - to speak out about their condition and causes many new patients unneeded worry and distress.

A colostomy is a term used to describe a surgical procedure. During a colostomy, surgeons divert one end of the large intestine into a visible opening – known as a stoma – on the patient’s abdomen. A small pouch, or colostomy bag, is then placed over the stoma to collect waste products that would normally pass through a person's rectum and anus in the bathroom.

An ileostomy is a similar procedure that applies to the small, rather than the large, intestine.

Here are six myths about having a stoma to mark Crohn's Awareness Week:

Everyone can tell you have a stoma

One of the most common fears of new ostomates is that having a stoma is noticeable and people will be able to tell that they have one.

However, without telling someone about your stoma there is no clear way for someone to know you are wearing an ostomy bag.

Around 1 in 500 people are ostomates in the UK so it is likely you have met plenty of people with a stoma without even knowing.

If you work for an organisation of 2,000 employees, there is likely to be around 4 ostomates working there!

People with a stoma smell

“Will I smell if I have a stoma?” – is a common question we hear at the Colostomy Association. However, modern ostomy appliances are made of lightweight and odour-proof materials that ensure no smell should leave the bag.

You might notice the smell when changing your bag in the toilet - but it would be no different from anyone else using the loo.

It is believed that this myth came about because early ostomy supplies were not odour-proof. However, with modern stoma bags there should not be any smell at all.

Only old people have stomas

Despite improved public awareness of ostomates, many people still think of having a stoma as a condition that only affects older people.

While the elderly are more likely to be affected by some of the causes of stoma surgery, there are many causes which can affect people of all ages including tiny babies born with birth defects.

Incontinence, diverticulitis, childbirth, injury, cancer and auto-immune diseases such as Crohn’s are among the variety of causes for a stoma. The Colostomy Association aims to help ostomates of all ages – our new helpline, JOSH, supports families of children with bowel or bladder dysfunctions.

You have to change your diet with a stoma

While having a colostomy or ileostomy changes where your poo might come out, it doesn’t mean you have to change what you eat. You will have to alter your diet in the weeks following surgery, but you shouldn’t have to make any long-term changes to the way you eat.

Of course, food which caused you indigestion, constipation or diarrhoea will continue to do so after having a stoma, so doctors recommend a healthy and balanced diet as they would for anyone else.

You can’t go swimming with a stoma

Many people fear that having a colostomy means you cannot enjoy the same hobbies and activities that you did before the operation. While you may want to avoid any strenuous activities during the first few weeks after surgery, having a stoma is no barrier to living a full or active life.

One activity many assume you cannot enjoy with a stoma is swimming. Self-consciousness and fears of the bag coming loose in the pool prevent many individuals from enjoying a leisure activity that can be beneficial for ostomates. With a modern ostomy bag you will be able to swim in the pool or the sea without the bag coming off and it won’t be harmful to your stoma.

To help avoid feeling self-conscious while swimming, some ostomates prefer to wear smaller bags, a plug, a pouch cover or wear specially designed swimwear.

You are alone

Many of the myths and fears in this list exist because many ostomates think they are alone: that they are the only person who has a stoma, that they have nobody to talk or and have no one who will understand.

There are over 120,000 ostomates in the UK today - of all ages, ethnicities, sexualities and genders. Whatever your fear or concern, there will be someone else who has gone through the same thing as you.

Niall Norbury is the Marketing Communications Officer at the Colostomy Association charity.