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9 myths about having a stoma

Mar 5, 2015

 Despite huge steps forward in public awareness of stomas, there still are many myths around having a colostomy, ileostomy or urostomy. To help understand the truth about life as an ostomate, here are 9 common myths about having a stoma.

1. 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. Sadly, there is still some stigma around having a stoma and so it is understandable that some ostomates are concerned that everyone will know they have a stoma bag.

However, without telling someone about your stoma there is no clear way for someone to tell you are wearing a stoma 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!

2. Having a stoma is permanent

Having a stoma is often seen as a permanent change to someone’s life. However, due to improved surgical techniques, the number of operations for permanent stomas is in decline.

The main reasons a temporary stoma may be formed include bowel cancer, inflammatory bowel disease, diverticulitis and injuries to the bowel that mean it has to be rested in order to heal.  These can then be successfully reversed.  Nowadays, around 35% of ostomates have a temporary stoma.

3. You can’t go swimming with a stoma bag

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.

4. Ostomates smell

“Will I smell if I have a stoma?” – This is a common fear 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.

5. Having a stoma means completely changing your diet

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. 

6. 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 – which is heart breaking for their parents.

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.

7. Ostomates cannot become pregnant

In a small amount of cases, undergoing ostomy surgery can cause infertility problems but having a stoma does not mean that you can no longer become pregnant. A likely cause of this myth is that conditions like Crohn’s Disease can sometimes cause infertility – but this is not as a result of having a stoma.

8. You cannot have a sex life with a stoma

Some people are nervous that having a stoma will end their sex life: whether as a result of having the operation or because of fears of how their partner will view them. However, having a stoma is no barrier to having a normal and loving relationship, or a full and active sex life.

A small percentage of men report issues with impotence but often trying a different position or using a sexual aid can prevent this. Being open and honest with your partner about having a stoma can help dispel any concerns they may have and allow you to continue to enjoy an active sex life.

9. 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 or gender. Whatever your fear or concern, there will be someone else who has gone through the same thing as you.

You do not have to feel alone or isolated. The Colostomy Association has a private Facebook group where over 3,000 ostomates talk freely – and we have a 24 hour helpline staffed by ostomates ready to talk to you every day of the year. Call us on 0800 328 4257.

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