Sally Wright has worked as a Stoma Care Nurse for over 15 years, providing specialist care, education, and support to individuals recovering from stoma surgery within the community. Sally recognises that every patient’s recovery journey is unique, and she has a particular interest in the psychological aspects of adapting to life with a stoma. Her previous role as a Dermatology Sister highlighted the importance of emotional wellbeing whilst coming to terms with changes to our bodies and the impact on self esteem.
Myth vs. Reality: Common concerns with ostomy
Myth: Stomas only affects elderly individuals.
Reality: Stoma surgery can be performed on individuals of all ages, from newborns to older adults. A stoma is formed to treat conditions like colorectal or bladder cancers, inflammatory bowel disease (IBD) such as crohn’s, ulcerative colitis, diverticular disease, bowel obstructions, incontinence, physical trauma or injury and congenital conditions; all of which have no age boundary.
Myth: People will know if I have a stoma
Reality: One of the most common fears is that having a stoma will be noticeable. However, people will usually only know if you tell them. It’s estimated that 1 in 500 people in the UK have a stoma, so you’re likely to have met someone with a stoma without even knowing it.
Myth: Your stoma will keep changing shape
Reality: In the first six weeks following your surgery, your stoma will reduce in size and change shape and appearance. This is due to the swelling reducing internally and externally. Your stoma can also change shape or size if you put on or lose weight and your abdomen changes.
Myth: My stoma should look pale pink or dark brown.
Reality: A healthy stoma is always bright red, moist, and shiny, similar to the inside of your cheek. If a stoma ever looks pale, dusky, purple, or black, it indicates a lack of blood supply and requires emergency medical attention.
Myth: Having sore skin is something you need to put up with when you have a stoma.
Reality: Sore skin and irritation can cause damage to the skin around the stoma. It can often be caused by the leaking of faeces/urine onto the skin. It is good to check your stoma appliance fits correctly and if you are unsure, contact your stoma care nurse for guidance. Occasionally skin irritation can be due to mild skin allergies or infection, again it is wise to speak with your stoma team or GP if you suspect this is happening.
Myth: You need soap and expensive products to clean the skin around the stoma.
Reality: Warm tap water and a simple, non-moisturizing soap are all you need. In fact, wet wipes, baby wipes, and heavily fragranced soaps leave a residue that stops your pouch from sticking properly.
Myth: Odour is part of having a stoma
Reality: It takes time to become confident with your stoma pouch and its ability to retain odours. Most pouches have a charcoal filter which will help any gas slowly escape your pouch, whilst the charcoal element helps with odour control. Odour is contained within the pouch, so people with you will not be able to smell anything. If you are concerned about the odour whilst changing the pouch, keep a room freshener spray with you. Pocket size ones are available.
Myth: Your stoma nurse will change your pouch every day for you
Reality: Your stoma nurse will show you how to change your ostomy bag whilst you are in hospital. You will be expected to change your pouch yourself or with help from a relative/carer once you are home. You may be visited at home by a community stoma care nurse in the weeks following your discharge from the hospital, to monitor how you are getting on and if there are any issues.
Myth: I’ll need to follow a strict diet with a stoma
Reality: Following surgery, you may find you are more sensitive to certain types of foods. Slowly re-introducing different types of foods into your diet and monitoring how you feel, will help identify what agrees with you and what doesn’t. There is plenty of literature about diet with a colostomy or ileostomy and what foods to avoid with regards to stoma blockages.
Myth: You can never drink alcohol or fizzy beverages again
Reality: You can still enjoy these drinks, but moderation is key. Fizzy drinks and beer increase gas production (stoma ballooning), while alcohol can accelerate dehydration, which is a critical concern for people with an ileostomy.
Myth: You must buy a completely new wardrobe of loose, baggy clothes to hide the pouch.
Reality: Modern pouches are highly discreet and designed to flatten against your body. Most people wear their normal pre-surgery clothes. High-waisted trousers, skirts, or support underwear can help secure the pouch tightly against your skin.
Myth: I shouldn’t swim or bathe with my pouch on
Reality: There is no reason why you cannot do either. The stoma pouches are waterproof and therefore can be left in place when bathing or swimming. Just don’t forget to cover the filter with a filter cover. You may even prefer to remove your pouch during showers and baths; this is a personal choice. There are some smaller types of pouches that can be used during swimming if you are conscious of the size of your pouch. Swimming costumes and trunks can now be designed to help disguise your pouch with ruching to the material.
Myth: I’ll have to buy all my stoma products
Reality: In the UK, your stoma equipment is available via prescription from your GP and therefore will cost you the usual prescription costs. A pre-payment certificate is an economical way of paying if you are not exempt from charges. People with a permanent stoma or those undergoing treatment for cancer are exempt from paying prescription charges, as are people with certain other medical conditions. Your stoma products will arrive at your door via a delivery company that will arrange your monthly prescription with approval from your GP. They supply pre-cut pouches/flanges, complementary dry wipes and black bags to dispose of your pouches.
Myth: A two-piece system is better than a one-piece system
Reality: There is a choice between a one-piece system where the pouch and flange are attached together and are applied/removed as one piece. Or the two-piece system where the flange and pouch are separate allowing you to apply the flange first and then the pouch on top, you can then leave the flange in place for a few days but change the pouch more often. It is personal choice as to which one you use, as they are both excellent systems.
Myth: Now that I have an ileostomy or colostomy, I shouldn’t be passing anything from my rectum
Reality: The colon will still produce mucus after your ostomy surgery. Depending on the type of surgery you have had, it can be normal to pass clear mucus from your rectum for the first few weeks, this usually slows down and reduces in the amount and frequency. If you have any concerns, please contact your stoma care nurse.
Myth: I won’t be able to have sex now that I have a stoma
Reality: Prior to your operation, your surgeon and stoma nurse will explain any risks to your sexual function that your surgery may cause. For many people, there is no reason why you cannot continue a fulfilling sex life once you have recovered from surgery – you can read more about sex and relationships with a stoma here. You may want to look at some precautions such as emptying your pouch first or wearing a less bulky pouch. There are other accessories available to help secure your pouch during intimate moments.
Myth: I will not be able to exercise with a stoma
Reality: Once you have been given the all-clear from your surgeon and have recovered from surgery, there is no reason to avoid exercise. Start gently, try to avoid heavy lifting to prevent a parastomal hernia and slowly build up your unique exercise regime. There are plenty of types of exercise that are great for ostomates, including walking, swimming and building up your core muscles by taking part in pilates or yoga.
Myth: Ostomates cannot travel on a plane
Reality: People with a stoma can fly in a plane, they can use any mode of transport. What can happen on the flight is that due to the change in pressure, you may experience a little more gas than usual, so be prepared!
For more information and advice on flying as an ostomate, check out our guide on travelling with a stoma.
Bottom line on ostomy myths and realities
If you’re worried about anything regarding your stoma, speak to your stoma nurse to gain all the correct facts. Join a support group through the association where other ostomates can give you first-hand experience of how a stoma affects their life on a daily basis. Follow our healthcare blogs which are filled with up-to-date information to support ostomates and their families.