This guide has been written to help you understand your colostomy. It will explain what a colostomy is and provide you with advice and support for before and after colostomy surgery.
It is normal to feel anxious before your surgery. But remember, there are thousands of people every year who are on the same journey. For a lot of people, a colostomy is a life-saving procedure. Every person is different and you will find that certain information is more relevant to you.
This information is available as a downloadable guide here, which you can print off.
What is a stoma?
The word ‘stoma’ is derived from the Greek, meaning ‘opening’ or ‘mouth’. Your stoma will look red, feel moist and be unique to you. No two stomas are the same. It may protrude from your abdomen or lay flat. It may also have dips, creases or folds depending on your body shape. Your stoma has no nerve supply so can feel no pain. Learn more: What is a stoma?
Anybody of any age can get a stoma. They do not affect life expectancy and often improve quality of life.
What is a colostomy?
A colostomy is formed by a surgical operation which brings a part of your large intestine (colon) through an opening on your abdomen, usually on the left-hand side. It is then stitched down to the skin. This means that poo leaves the body through your colostomy, instead of going to the toilet as you did before. You cannot control or feel your stoma. If your anus is left in place, you may still feel the urge to go to the toilet as if you need a poo and pass some mucus.
It may be temporary or permanent depending on the medical reason for your surgery and the type of surgery you had. For some people, it is possible to have another surgical procedure to reverse the colostomy. You will need to discuss this with your surgical team. Read more: Is a stoma permanent?
Even if your colostomy is reversible, you may choose to keep it because your quality of life has improved or you want to avoid another surgery. If you have had your anus and rectum removed, your stoma will not be reversible (known colloquially as Barbie Butt surgery, where your bum is stitched up).
It can take time for your colostomy to settle down and for your stools to become formed, like a traditional poo. Given time, your colostomy can start to regulate and you may find that you go back to having a bowel opening routine. A colostomy usually functions between 1 and 3 times a day. This is individual to each person and depends on lifestyle, diet and fluid intake.
Types of colostomy
- End colostomy – The end of the colon is pulled through the surgical opening in your stomach and stitched to your skin to form the stoma. An end colostomy is usually permanent. This may be the result of a Hartmann’s Procedure. A lower section of the colon may be removed and any inactive parts that remain are known as the rectal stump.
- Loop colostomy – A loop of colon is pulled through the surgical opening in your stomach and stitched to your skin to form the stoma. This stoma has two openings, one of which is connected to the functioning part of the bowel whereas the other is connected to the inactive part. A rod or bridge may be used to support the loop of colon during your post-operation recovery stay in hospital.
- Defunctioning colostomy – This colostomy stops waste matter travelling through the section of your colon that is located lower down than where your stoma is.
Reasons for a colostomy
Why would you need a colostomy? Here are some common causes:
- Cancer
- Inflammatory bowel disease
- Abdominal trauma
- Congenital abnormalities
Colostomies can be formed during a planned surgery or emergency. Learn more: Why would you need a stoma?
Preparing for colostomy surgery
Your colorectal surgical team will provide you with information on all aspects of your surgery. You may have a few appointments prior to surgery. This may include a preoperative assessment. During one of your meetings, your nurse will determine where the stoma will be placed so you can easily take care of it yourself. This is called ‘Stoma Siting’.
You will be provided with plenty of written information about the type of surgery and stoma you will have. You will also be given samples of supplies like stoma bags and medical adhesive remover to take home and familiarise yourself with. This is your chance to ask any questions or bring up any worries you might have.
Colostomy surgery recovery
When you wake up, you will be wearing a transparent drainable bag, so you and your nurse can monitor your new stoma. To begin with, your nurse will empty your bag for you until you feel well enough to do it yourself. You will then start learning how to care for your own colostomy.
Your colostomy will begin to work with a fluid watery output, which will become more formed over a short period of time. Don’t be alarmed if you experience wind, this is normal and will decrease over time!
A colostomy is a big surgery. It is normal to feel anxious, a little sore or tired after surgery. Remember to give your body time to recover both mentally and physically. It may take a while and you may experience a range of emotions, but there will be plenty of people there to support you.
Once discharged from the hospital, you may find it difficult to do simple things, such as showering and changing. Don’t worry, this will get easier over time and is completely normal. You should not feel the need to be bedridden all day. Getting up and walking around is very beneficial for your recovery as it will help with your blood circulation.
As expected with all surgeries, you may experience some slight pain and discomfort. If you need to take some pain relief, follow the advice of your stoma nurse who will advise you on how to manage any pain and provide support and guidance on the tablets you have been prescribed. Follow the instructions given to you by your surgical team, which could include advice regarding physiotherapy.
Your surgeon will advise you as to when you can safely return to driving. In some cases, you may need to report your surgery and treatments to your insurance company and seek advice.
Daily checklist
- Get up and walk around regularly.
- Take time to nap or rest when tired.
- Take your time returning to any strenuous tasks such as mowing the lawn or using a vacuum cleaner.
- Be aware of the increased risks when lifting heavy objects as this could cause a hernia.
- Take pain relief medication as recommended by a healthcare professional to ease discomfort.
How does a colostomy bag work?
A colostomy bag or pouch is designed to be placed over your stoma in order to collect your poo. It is attached to the skin around the stoma using an adhesive.
There are different types of bags: one-piece, two-piece, drainable and closed, to name a few. Colostomy patients tend to wear a closed bag, unless you have particularly loose or high volume output, in which case a drainable bag may be easier to manage. Your stoma nurse will help you determine what type and size of bag you should wear. Learn more: The ultimate guide to stoma bags
Your stoma will be individual to you and will need to be measured so that the part of the appliance which goes against the skin (the flange or base plate) fits around it. This is called the ‘template’ and will help to prevent leakage and irritation to the skin surrounding your stoma. Initially, you will be shown how to cut your stoma bag template. Once your stoma has settled in size (which can take a few weeks to months) you will be able to request pre-cut stoma bags.
Stoma care products are specialised products that are available on prescription through home delivery services and some pharmacies. You will be provided with 2 weeks’ supply of products and follow-up advice before you are discharged from the hospital. It is recommended that you use a medical adhesive remover to limit irritability to the skin around your stoma and make changing your bag easier.
Does a colostomy bag smell?
No, colostomy bags do not smell. They are designed so that any odour is concealed within the bag and they have a filter to allow gas to escape while neutralising the smell. If you are worried about colostomy odour, you can buy scented sachets, gels and drops.
How to change a colostomy bag
Here is a step-by-step guide on how to change a colostomy bag:
- Wash your hands.
- Ensure you have everything you need to change your bag to hand.
- Ensure clothing is out of the way and you have easy access to your stoma.
- Use a medical adhesive remover to release the adhesive barrier (follow the manufacturer’s instructions).
- Remove the stoma bag from top to bottom by gently peeling back the flange.
- Once the stoma bag is removed, fold the adhesive section in half to seal it.
- Place the stoma bag into a disposal bag.
- Carefully wipe any stool or fluid from the stoma and surrounding skin with a dry wipe.
- Do not apply any cream or lotions to your stoma unless advised to by your stoma nurse.
- Clean your skin with a wet wipe.
- Dry your skin.
- Cut the flange of your new bag in order for it to accurately fit around your stoma.
- Use a medical barrier film spray or wipe to protect your skin from irritation (follow the manufacturer’s instructions).
- Apply any additional products as recommended by your stoma care nurse, such as a seal, flange extender, etc.
- Remove the backing film on the new bag.
- Position the flange around your stoma and gently smooth it upwards, avoiding any creases in the flange.
- Finally, place your hands on top of your stoma bag and hold for 30+ seconds to ensure your bag is well stuck to your skin.
Eventually, you will become comfortable with wearing and changing your stoma bag and it will become routine for you.
Taking care of your colostomy
Colostomy skincare
It is important to keep the skin around your stoma (peristomal skin) clean and healthy. Healthy skin provides a natural barrier against irritation and infection. The peristomal skin should have an appearance similar to the surrounding abdominal skin. If you notice any changes to your stoma or peristomal skin e.g. swelling, redness, lumps or a rash, do not hesitate to contact your stoma nurse or GP, especially if the problem persists or gets worse. Find out more: Peristomal skin protection
What can you eat when you have a colostomy?
After your surgery, you may feel that you have lost your appetite or that your diet has become restricted. Don’t panic, you will be able to enjoy all your favourite foods again after you recover! Try to eat small amounts of food regularly, as it is common for patients to lose weight after a colostomy.
Having a colostomy shouldn’t restrict your diet in the long term, and it’s important that you eat a healthy, balanced diet. You may want to keep a food diary so that if you do encounter any stoma problems, you can track what may have caused it. Find out more: Foods to eat with a stoma
Remember to stay hydrated. It is recommended that you drink at least 6-8 glasses of water a day.
Can you shower with a stoma bag?
After your colostomy, you should be able to shower or bathe normally. It is your choice as to whether you want to wear your stoma bag while you wash. Don’t worry; water will not flow into your stoma. Water alone is considered appropriate to keep your stoma clean.
However, you may also use soap. If you decide to use soap to clean your stoma, opt for a perfume-free and non-moisturising soap. Soap should not irritate it in any way or cause any pain. Rinse soap off with water.
Water may disrupt the adhesion between your skin and stoma bag. Remember to always check your bag after showering or bathing to see if it is still stuck well to your skin or dry your skin well before applying your new bag.
What can you wear when you have a colostomy?
The main concern for most stoma patients is that their bag will be visible under their clothes and restrict their fashion choices. This is not the case. You will be able to return to your usual clothing once your swelling has settled. You can wear any clothes and dress to your personal preference. You do not have to wear ‘baggy clothes’ in order to disguise your bag. Today’s bags are designed to be unrecognisable under clothes so unless you tell someone that you are wearing one, no one will ever know.
Swimwear
When it comes to swimwear, some people may feel self-conscious about their body image after surgery. You shouldn’t! There are plenty of companies that produce swimwear for people who have undergone a colostomy. If you wear your own swimwear, thicker fabrics will help disguise your bag. For females, high-waisted bikinis don’t only look fabulous but can also cover your stoma. If you prefer, a tankini top will also hide your stoma. For males, swimming shorts are ideal as they are worn above the stoma and are loose fitting.
Underwear
Many people with a stoma feel that they are unable to wear their usual style of underwear. Don’t let your stoma stop you from feeling sexy. There are plenty of companies that sell specifically designed underwear for male and female patients. Not only is the underwear top of the range for your medical needs, but it is also very fashionable.
Stoma clothing websites
Exercising with a colostomy
A colostomy should not affect your ability to exercise in the long term. You should be able to enjoy the same activities as before.
After your surgery, you may be visited by a physiotherapist who will give you plenty of advice and assist you with walking. It is important that you move around your home and try to take a short walk daily. However, don’t push yourself or do anything you don’t feel strong enough to do. Your age, fitness level prior to surgery, physical condition and surgery type will all become a factor in how quickly you can return to physical activity.
As time goes on and you begin to recover, you should be able to get back to a healthy lifestyle and engage in activities such as swimming, yoga, skiing, jogging and tennis (to name a few!). You can even partake in contact sport with a stoma – just like Colostomy UK’s rugby team! However, do not engage in any rough activities or try to lift weights until you are fully recovered. If you have a perineal wound, avoid cycling until it has healed.
Many patients may need a support belt to protect them from the development of a hernia or a stoma protector to prevent them from getting hit in the stoma. Speak to your stoma nurse for more information and advice.
For further tips and advice on returning to training after your surgery visit this Colostomy UK resource.
What can you not do with a colostomy?
There is nothing you can’t do with a colostomy! Except maybe sleeping on your stomach…
Can you go to work when you have a colostomy?
As with most surgeries, you will need time to recover. Your doctor will advise you as to when you should return to work. Your colostomy shouldn’t limit you at work and you should be able to do everything you used to do. Make sure you take spare supplies to work with you and you’ll be back to your routine in no time!
It’s up to you whether you tell your employer that you have a stoma. If you do tell them, they should be able to offer adjustments to make working more accessible for you, such as allowing you a phased return to work, flexible working arrangements and making toilets stoma-friendly.
Can you travel with a colostomy?
If you feel nervous about travelling after your surgery, don’t worry, it’s completely normal. You’ll gain your confidence back in time. But until then, maybe start with short-haul destinations.
Here are some quick tips for travelling with a stoma:
- Go through your bag change routine and make a list of everything you use.
- Calculate how many supplies you will need and pack plenty of extras, including different bag sizes.
- Take a few drainable bags with you. They are useful in case of tummy upsets because they can be emptied regularly.
- If flying, keep your stoma supplies in your hand luggage so it is not lost and you have them to hand should you need them.
- Carry your stoma supplies with you in a dedicated, easy-to-carry bag for quick and easy changes.
- You may want to download a travel certificate in the local language to explain your condition.
- For travelling in the UK, you can use a radar key to easily access disabled toilets.
There is plenty of advice available to help you plan your travel. Read more: Travel advice from Colostomy UK
Sex and relationships when you have a colostomy
A big worry for many people after surgery is that their new stoma will interfere with their intimate relationships. During recovery, you will be getting used to your new stoma and may not feel ready to engage in any sexual activity. Make sure you voice your worries to your loved one so they are able to understand. Chances are they are just as anxious as you.
It is important that your partner understands that sexual activity will not harm you or your stoma. If you have undergone extensive surgery, you may experience pain and some sexual positions may not be comfortable. Ladies may also experience dryness after surgery. If this is the case, try using a lubricant or changing positions to determine what is most comfortable and pleasurable for you and your partner.
After time, some people who have undergone a colostomy choose not to wear a stoma bag during intimacy (you can discuss this with your stoma nurse). However, if you decide to wear a bag, you may choose to empty it beforehand or wear a smaller one to be more discreet.
Sometimes, stoma surgery can affect the nerve endings and blood supply to the penis, resulting in erectile dysfunction. Speak to your stoma care nurse about this.
You and your partner will still be able to conceive after stoma surgery. Speak to your oncologist if you have any fertility questions. However, if you don’t want to conceive, you should speak to your doctor regarding contraception after surgery.
Body image after colostomy surgery
No two people in this world are the same, and we all perceive our own bodies differently. With today’s influx of social media, we also tend to compare our own bodies to other people’s. Having a stoma will change the physical state of your body, temporarily or permanently. This may alter the way you see yourself. Take all the time you need to adjust to your physical changes.
Remember that you have potentially undergone lifesaving surgery and you are a survivor. Do not let your stoma define or control you. You may feel emotional and down some days, but remember you’re not alone. Thousands of people have a colostomy every year and will be going through the same feelings as you. Talk to the people around you about any body image worries you might have. Discussing your feelings with your close friends and family can help.
Colostomy problems
There are many common problems that people with a colostomy may encounter, most of which can be easily solved.
Pancaking
Pancaking results in the filter within your bag becoming blocked by stools due to the pouch layers sticking together. This may cause the bag to come loose from your body. It may be useful to use a filter cover or ensure that there is air in the bag before application. A balanced diet and sufficient fluid intake can reduce pancaking.
Ballooning
Ballooning is a common issue that many patients with a colostomy experience. Just like it sounds, your stoma bag fills with wind which may cause your bag to come loose from your body. If you suffer with excess wind, speak to your stoma nurse about changes you can make to your diet or lifestyle. Alternatively, you can remove your filter cover to release any air.
Painful skin
Possibly the most common problem stoma patients encounter is sore skin. There are many causes, including diarrhoea or loose stools on exposed skin, a poorly fitted bag, incorrect template sizing, skin reactions or sensitivity to any products and folliculitis (usually caused by shaving). If you are struggling with painful skin or leaks, talk to your stoma nurse who may suggest you try a medical barrier film or stoma seal.
Read more: Stoma problems
Colostomy resources
This information is available as a downloadable guide which you can save to your computer for future reference or print off at home. Click here to access it.
You may also want to explore Colostomy UK’s comprehensive information and resources, including a 24-hour stoma helpline.
If you are a medical professional and are interested in finding out more about how StoCare products can help your patients or requesting a repeat sample order, please email info@rhodespharma.co.uk.
This information is for guidance and does not replace advice given by your healthcare professional.
