10 ostomy-bag myths you need to stop believing

One in 500 people in the UK have a stoma, but there are still a lot of misconceptions surrounding them

Friends hugging and walking
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In true British closed-lip fashion, the subject of stomas – an opening on the side of the abdomen through which bodily waste can pass – is rarely openly discussed. This is despite findings by the Colostomy Association showing there are currently an estimated 120,000 people with stomas living in the UK.

What are stomas?

There are three types of stoma: colostomy (which diverts the colon), ileostomy (which diverts the small intestine) and urostomy (which diverts the bladder). People with ostomies need to wear a stoma bag on the outside of their bodies to collect waste safely and securely. Your bowel continues to function normally, it just goes about doing it in a different way. There are all sorts of reasons why a person might need a stoma, from conditions such as Crohn's Disease or ulcerative colitis to childbirth complications and injuries caused in accidents.

Recently, there have been quite a few steps forward in raising ostomy awareness. A social media trend was sparked back in 2014 in which people posted photos showing their stoma bags using the hashtag #GetYourBellyOut, and some have gone even further by sharing #StomaSelfies in order to bust taboos surrounding the subject.

Sam had glamorous photos taken showing her stoma and ostomy bag to raise awareness
Timm Cleasby for The Picture Foundry (www.thepicturefoundry.com)

Sam Cleasby, who had an ileostomy in 2014 after being diagnosed with ulcerative colitis, started the #StomaSelfie campaign following a photoshoot she did with her photographer husband. She said:

"I realised that though we are becoming more accustomed to seeing an ostomy bag, what lies behind was a mystery to many and so I decided to break the taboo and show my stoma. I wanted people to see that it wasn't scary or disgusting, it was just a small part of me. I was nervous but I knew it was the right thing for me, as an advocate campaigner for IBD and ostomies, to do."

For Sam, sharing her story with others turned out to be her biggest comfort during such a scary time in her life and her blog has since provided comfort to thousands of other people who find themselves in a similar situation.

The biggest misconceptions:

Despite the huge steps forward that have been made in raising ostomy awareness worldwide, Niall Norbury, of the Colostomy Association, says that there's still a way to go to bring stomas into the public conscience.

"There remain a lot of myths and misconceptions about life with a stoma. Many people believe it is for the elderly or that it's obvious if you have one – neither of which are true. Having a stoma is a big adjustment, but we like to encourage the idea that people can live a full and active life. I think many people worry that others will react negatively to you having a stoma – which is why more needs to be done to raise awareness of the condition."

Whilst having one of these bags undoubtedly takes quite some getting used to, the operation does not necessarily require massive lifestyle changes. Niall gave us the low-down on the ten most common ostomy myths that, to put it quite simply, are a load of rubbish:

1. It's permanent

Stomas aren't necessarily for life. While some are permanent, more and more patients are being offered the option to have a reversal operation, whereby your digestive system is reconnected or the external bag is placed inside the body.

"Improvements in surgery are resulting in more people undergoing surgery for a temporary stoma. This means that after a period of time it can be reversed. However, even if it is permanent – it should not limit someone from living a full and active life."

2. Everyone knows

This is understandably the biggest concern of many ostomates – that their external pouch is immediately obvious for everyone to see. This is very much not the case.

"In reality, the only way people can find out is if you tell them or show it to them. We find that most people with a stoma are able to wear the same clothes they could before they had surgery, as the bags are very discreet."

Roughly 1 in 500 people in the UK are ostomates, so it's actually quite likely you have met plenty of people with a stoma without even knowing.

3. You have to change your diet

While the very nature of having a stoma means that your digestive system is undergoing some big changes, that doesn't mean that your diet has to have a total makeover.

"Many people think there is a strict list of what ostomates can and can't eat which isn't true at all. It may be that some small adjustments have to be made, but for most people you can enjoy the same food and drink you were able to before you had a stoma."

4. You can't exercise

Time is a great healer, and once post-op recovery is complete ostomates are encouraged to start introducing exercise back into their daily routine.

"Exercising regularly can have a real positive impact on people with a stoma as it reduces the risk of a hernia and keeps your body fit."

Activities such as pilates and yoga are especially suitable for people with stomas as they help develop and strengthen abdominal muscles. For people wanting to take part in more strenuous sports, special guards and shields are available to give the stoma added protection.

5. You can't have sex

There is no reason why having a stoma should prevent people from having a loving relationship and an active sex life.

"Many people are concerned about their partner not being comfortable with their stoma. We encourage people to be honest and up front and to make sure you find the right person who understands your condition properly."

Sexual concerns are always best discussed with your partner, and it's important for both of you to be warm, tender and patient with each other.

A stoma bag doesn't affect your sex life
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6. It smells

The myth of a smelly stoma bag most likely comes from a time when stoma technology was less developed than it is today.

"Nowadays, there should be no reason that your stoma bag should smell unless there is some fault. There may be a smell when changing your bag but it is no different to anyone else when they use the toilet."

Modern bags are made of lightweight, odour-proof materials that will stop smells leaving the bag, so there's nothing to worry about.

7. It ruins your social life

It takes some time to adjust to life with a stoma. However, most people should find that they are able to live a full and active life post-ostomy.

"Ostomates may have to make some small changes but generally should not find their social lives severely limited. We encourage people to maintain a positive attitude and being honest to people about your stoma if you're comfortable."

People with stomas are also perfectly able to travel abroad, although it's essential to have travel insurance and enough supplies with you.

8. You can't swim

Self-consciousness and fears of the bag coming loose in the pool prevent many individuals from enjoying this beneficial activity, but in reality there's nothing stopping you from jumping in at the deep end.

"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."

9. You can't get pregnant

A likely cause of this myth is that conditions such as Crohn's can sometimes cause infertility. However, this is not always the case and it is not as a result of the stoma. Many women also fear that pregnancy after ostomy surgery is dangerous or high-risk, which again isn't necessarily true.

Phil BoormanGetty Images

In fact, many mothers have said that they found pregnancy after surgery to be easier than it was before. Additionally, pregnancy proves to the mum-to-be that her stoma is not a disability, and that her body has resumed normality.

10. You're alone

As with any big and uplanned life changes, it can be easy to think that nobody understands what you are going through.

"Because there's no way of knowing if someone has a stoma unless they tell you – it can come across an extremely rare condition. However, there is a huge amount of support out there for people living with a stoma who want to talk to other people about their condition."

There are support groups up and down the country where people can share their experiences and discuss what life with a stoma is like. It might be that you already have a stoma, will soon be undergoing ostomy surgery or simply want to go along and support a friend. No matter what your situation, it's important that you get to know the facts and tackle unwanted stoma stigmas.

On October 1st the Colostomy Association will be celebrating colostomy day to raise awareness of the issues facing people with a stoma.

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