The top 10 myths about stomas - debunked

Living with a stoma can be challenging, particularly for those who are just starting out on their stoma journey. This is partly because of the complex medical circumstances many ostomates are facing - but it is also partly due to a relative lack of awareness about the stoma experience.

Although Potter Rees Dolan’s recent stoma awareness survey indicated that the British public are showing greater knowledge of what stomas are and a desire to make ostomates feel more welcome in society, a number of key misconceptions about stomas still persist - and this can make it harder for people with a stoma to come to terms with what their condition actually means for them.

As part of our campaign to promote body positivity among ostomates and address the stigma that these individuals often face, we’ve spoken to a few influencers from the stoma community and put together a top 10 list of the most common myths about stomas. Our hope is to debunk some of these incorrect beliefs and help people with stomas understand more about what life with a stoma is really like.

MYTH: Stomas are immediately obvious to those around you

One of the most persistent misconceptions about stomas is the idea that they are obvious visible to others. When they think of ostomy bags, many imagine large, cumbersome pieces of equipment that visibly bulge through clothing, but as lifestyle blogger and ostomate community influencer Jenna Donofry attests, this isn’t accurate at all.

Jenna said: “My initial perception of stomas and ostomies were like anyone else's: you can hear it, smell it, see it, sense its evil! All wrong. Ten times out of ten, you'd never know someone had a stoma unless they told you or showed you.

“Like most, I had no idea just how far medical technology has taken ostomy supplies. It truly becomes a part of you as opposed to feeling like a device.”

Jenna’s perspective is borne out by the figures - it is estimated that one in 500 people in the UK are currently living with a stoma, so the chances are high that most people will encounter several ostomates every day without ever noticing it!

MYTH: Only old people have stomas

Many have a perception that stomas are only needed by the elderly, but in truth, the medical conditions that make stomas necessary - including bladder and bowel obstructions, Crohn’ disease, ulcerative colitis and bowel cancer - can affect people of any age.

This means that a huge number of ostomates are still young, active and leading otherwise healthy lives. Lolly Cooper is one of many young people using blogs and social media to raise awareness of what it’s like to live a full, outgoing life with a stoma, and she points to the presence of a “whole community of ostomates of all ages” as a key reason why she does so.

Other examples of young ostomates working to broaden the conversation about stomas online include Charlotte Twinley, Ellie Cunningham and Mesha Moinirad, who goes by the online name Mr Colitis Crohn’s. These all offer a clear illustration that there is no one particular type of ostomate!

MYTH: Stomas are always permanent

Although many bowel conditions require the permanent use of a stoma, data quoted by Colostomy UK suggests that 35% of stomas are temporary. This means that in more than one-third of cases, it is possible to undergo a reversal operation that will restore your normal bowel functions.

Naturally, this will depend on how much of the bowel has been removed as part of the original operation, and which part of the organ was affected. This is a matter that will need to be discussed with medical professionals to identify the best path forward.

It is also worth bearing in mind that permanent stomas often provide the best outcomes. Jenna Donofry cites her stoma surgery as “the best decision I ever made for myself”, providing a lasting solution to a severe case of Crohn’s disease that she had endured for eight years without remission. As with all medical procedures, the most important priority is to find the right solution for the individual.

MYTH: Ostomy bags have an obvious smell

The idea that ostomy bags give off a clear and unpleasant odour is a persistent one, and again is often one of the key concerns that people have when weighing up their medical treatment options.

In the past, bad smells may have been a genuine problem with ostomy bags, but thanks to advances in modern technology, this is no longer the case. Modern bags use advanced materials and have inbuilt filter systems that makes them entirely odour-free, while the stoma itself also gives off no smell.

The only risk of odours related to ostomy bags tends to come while changing them, and this can be mitigated by taking care during the process to avoid any leaks. There are also deodorant products that can be purchased specifically to help address this issue, for those who are still concerned about it.

MYTH: You will not be able to eat and drink what you want

It is certainly true that ostomates will often need to make some adjustments to their diet to look after the health of their bowel, and to make it easier to manage their ostomy bag without the risk of them overfilling or ballooning.

However, most people with a stoma do not usually have to cut any specific food types from their diet; instead, the focus is more on eating regular meals, drinking plenty and chewing well, while being aware of the impact specific foods have on their system. Take a look at Potter Rees Dolan’s dietary guide for ostomates for more information on what foods to be aware of.

Lolly Cooper also notes that those who enjoy an occasional tipple can still do so with a stoma, advising ostomates to “introduce alcohol slowly to see which drinks work for you”.

MYTH: You cannot exercise properly with a stoma

It makes sense for people to wonder how the presence of an ostomy bag would affect their ability to take part in exercise, but one look at the thriving ostomate fitness community should be enough to show that any major worries are largely unfounded. Indeed, the likes of Mesha Moinirad have been vocal about how getting a stoma has helped them become fitter and healthier than ever before!

Jenna Donofry has become a certified personal trainer since having her stoma surgery, and recently put together a guide to keeping fit with a stoma for this blog. You can also check out our comprehensive resource page[1] on exercise tips for ostomates for even more information on this topic.

By making sure you listen to what your body is telling you and easing into a well-planned exercise regime, it’s more than possible for stoma surgery to be the start - not the end - of your fitness journey.

MYTH: You cannot swim with a stoma

A related worry is that getting a stoma makes it difficult to swim - not just due to concerns about overexertion, but also due to a perception that it is not possible to submerge an ostomy bag into water.

Lolly Cooper was eager to debunk this misconception, noting that she remains a keen swimmer and surfer even despite her stoma. Modern ostomy bags are designed to be secure and waterproof enough that they can be taken into the water with no risk of them coming loose or leaking; in some instances, it is also possible to use a stoma cap to replace the bag for the duration of the swim.

MYTH: Having a stoma limits what you can wear

Some people have concerns about the impact that having an ostomy bag will have on their wardrobe, but the truth is that modern bags are discreet and slim enough that most of your existing clothes will still fit perfectly.

Lolly Cooper said: “I really haven't changed my wardrobe since getting my stoma; once everything has settled down after the operation you'd be surprised at how much you can still wear! The only thing I avoid is waistbands that sit on my stoma.

“I tend to opt for high-waisted jeans that have quite a lot of stretch in them. That way the waistband is above my stoma and the stretch in the material means the bag isn’t too compressed.”

Beyond issues of finding the right fit, the main worry many will have about their clothing choices will relate to self-consciousness about others seeing their ostomy bags. Naturally, this will come down to the personal feelings of the individual, but it’s worth bearing in mind that our recent survey indicated that 78% of people agree or strongly agree that ostomates should not feel worried about having their ostomy bag on show in public.

Moreover, Jenna Donofry has cited the decision to show off her bag by wearing bikinis and crop tops as a key step forward in building self-confidence after her surgery, advising other ostomates to simply “wear what makes you feel good”.

MYTH: Stomas and ostomy bags will be a barrier to physical intimacy

Although it is sometimes necessary to avoid physical exertion in the immediate aftermath of stoma surgery, in the longer term there is no reason why a stoma should get in the way of a fulfilling sex life, as long as you are able to communicate your needs to your partner.

Support belts and special ostomy underwear can help keep the ostomy bag in place and out of the way when necessary, while taking the time to talk about any self-esteem and body confidence issues with your partner will help you feel comfortable during intimate moments.

It’s also important to remember that stoma surgery can have a very positive impact on your overall energy levels and physical capabilities if you’d previously been suffering from long-term illness, so there’s every chance that the benefits of getting a stoma will more than outweigh any downsides.

MYTH: Having a stoma will limit your lifestyle

If there is one key message to be taken by examining and debunking these prevalent myths, it should be that stoma surgery, in Jenna Donofry’s words, should not be seen as “a barbaric procedure that leaves you tainted for life”.

For the majority of ostomates, getting a stoma is in fact a hugely positive step, helping them to gradually overcome the limitations that chronic illness places upon them and enabling them to live life to the fullest. Jenna was able to achieve remission for the first time in eight years as a result, while Lolly Cooper says her stoma has given her her life back, becoming “a symbol of what I’ve battled through to be standing here today”.

This is why so many ostomates are committed to ensuring that members of the stoma community, as well as the general public, get the most accurate facts about the reality of stomas: because addressing these misconceptions will play a key role in helping ostomates across the UK embrace all of the positives that this treatment can bring.