This guide has been written to help you understand your ileostomy. It will explain what an ileostomy is and provide you with advice and support for before and after ileostomy 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, an ileostomy 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 an ileostomy. They do not affect life expectancy and often improve quality of life.
What is an ileostomy?
An ileostomy is formed by a surgical operation which brings a part of your small intestine (ileum) through an opening on your abdomen, usually on the right-hand side. It is then stitched down to the skin. This means that poo leaves the body through your ilestomy, 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. You still pee like normal when you have an ileostomy.
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 ileostomy. You will need to discuss this with your surgical team. Read more: Is a stoma permanent?
Even if your ileostomy 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).
The poo from your ileostomy can vary from a liquid to a semi formed consistency. It might look similar to porridge in consistency. However, the output from your stoma can change depending on your diet and volume of fluids. You will receive plenty of dietary advice before and after your surgery but it is recommended that you stick to a low fibre and low residue diet.
Types of ileostomy
- End ileostomy – This is formed when all or part of the colon (large intestine) is removed and the end of the ileum (small intestine) is brought through the abdomen to form the stoma. An end ileostomy may be temporary or permanent depending on the medical reason for your surgery.
- Loop ileostomy – This involves a loop of the ileum being brought through the surface of the abdomen. The looped ileum is then opened up and stitched to the skin to form a stoma, giving time for the diseased part of the colon to heal. A loop ileostomy is often temporary and may be reversed at a later date.
Reasons for a ileostomy
Why would you need a ileostomy? Here are some common causes:
- Cancer
- Inflammatory bowel disease
- Bowel perforations
- Congenital abnormalities
Ileostomies can be formed during a planned surgery or emergency. Learn more: Why would you need a stoma?
Preparing for ileostomy 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.
Ileostomy 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 ileostomy. Your ileostomy will work with a watery fluid output, which may become more like a paste over time. Don’t be alarmed if you experience wind, this is normal and will decrease over time!
An ileostomy is a big surgery. Feeling anxious, a little sore or tired after surgery is normal. 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 plenty of people will be 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 physiotherapy advice.
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.
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 an ileostomy bag work?
An ileostomy 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 many different types of bags: one-piece, two-piece, drainable and closed, to name a few. Ileostomy patients tend to use a drainable bag as the output from ileostomies is loose or liquid and very active. This will enable you to empty your bag frequently throughout the day (the number of times varies depending on your diet, lifestyle, etc), without having to take the bag off and replace it with a new one every time. Your stoma nurse will help you determine what type and size of bag you should wear. Learn more: The ultimate guide to stoma bags
How long you wear your ileostomy bag for is up to you. Three days is a good benchmark to aim for, as it allows you to check the condition of your skin while protecting it from frequent adhesive removal, which can irritate it. 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.
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. For ileostomies, the template is cut to fit so no skin is left exposed. 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.
Does an ileostomy bag smell?
No, ileostomy 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 ileostomy odour, you can buy scented sachets, gels and drops.
How to change an ileostomy bag
Here is a step-by-step guide on how to change an ileostomy 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 (ensure it is alcohol free).
- 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 ileostomy
Ileostomy 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. Here are our top ileostomy skincare tips:
- Ensure that your stoma bag template is measured correctly to prevent leaks.
- Remove hairs from around the stoma to prevent the adhesive on the bag from pulling on body hairs and causing pain/inflammation.
- Stay hydrated. You will receive advice regarding the amount of fluid you should be drinking based on the volume and consistency of your stoma output and how often your bag needs emptying over 24 hours.
- Use a medical adhesive remover to reduce the risk of skin damage when removing your bag.
- Use a protective barrier film spray/wipes to protect your skin from potential leakages and irritability.
Find out more: Peristomal skin protection and Stoma patients and MARSI
What to eat with an ileostomy
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 when you recover. Slowly begin eating foods that are high in calories and protein such as eggs, cheese, fish, meats and legumes to ensure that you do not lose too much weight, which can be common for ileostomy patients. You should also start eating carbohydrates such as bread, oats, pasta and potatoes (no skins).
As you recover and over some time you may be able to reintroduce food groups that include vegetables and fruits that you like. Patients who have undergone an ileostomy are usually advised to follow a low fibre, low residue diet to help maintain a good output and reduce the risk of blockages.
You may experience common digestive problems such as wind, odour and a more liquid stool output as you re-introduce some foods but you can self-monitor any changes and discuss these with your stoma nurse. You are unlikely to experience constipation when you have undergone an ileostomy. However, some foods may alter the consistency of your output.
Find out more: Foods to eat with a stoma
How to stay hydrated with an ileostomy
You are at greater risk of dehydration with an ileostomy because your large intestine (colon) is not active. The role of the colon is to reabsorb any remaining water and minerals back into the body. Your ileum (small intestine) does not absorb as much liquid as the colon.
You may experience a loose, liquid output for several weeks so it is important to follow all dietary and fluid advice given. Signs of dehydration include a headache, dizziness, tiredness, a dry mouth, low urine output (which may be dark yellow), weakness/lethargy and confusion.
If you think you are dehydrated, speak to your Stoma Care Nurse or GP who may recommend St Mark’s Solution or oral dehydration sachets that are available through pharmacies.
Can you shower with a stoma bag?
After your ileostomy, 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 an ileostomy?
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’ to disguise your bag. Today’s stoma bags are designed to be unrecognisable under clothes, so unless you tell someone 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 an ileostomy. 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. You can still wear the same underwear as you did prior to surgery. However, if you find your old underwear uncomfortable, there are plenty of companies that sell specifically designed underwear for male and female patients.
Stoma clothing websites
Exercising with an ileostomy
An ileostomy 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, running and tennis (to name a few!). You can even partake in contact sports 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 an ileostomy?
There is nothing you can’t do with a ileostomy! You can live a full and normal life.
Can you go to work when you have an ileostomy?
As with most surgeries, you will need time to recover. Your doctor will advise you as to when you should return to work. Your ileostomy 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 ileostomy?
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.
- 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 an ileostomy
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. Sending them this article may help: Supporting a partner with a stoma
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. You may choose to empty your stoma bag beforehand, wear a smaller one to be more discreet or use a stoma belt to hold it in place.
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 ileostomy 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 an ileostomy 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, or reach out to your stoma nurse or GP.
Ileostomy problems
There are many common problems that people with an ileostomy may encounter, most of which can be easily solved. Read more: Stoma problems
Ballooning
You still fart when you have an ileostomy, it just comes through the stoma instead of your bum. Ballooning is a common issue that many patients with an ileostomy 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.
Ileostomy help and resources
Your stoma nurse is there to provide you with support and advise you on what products you should use to care for your stoma after surgery and beyond. Stoma care products are available on prescription through home delivery companies and some pharmacies. Certain services will be included when you are supplied with stoma products. These include pre-cut templates (once your stoma has settled), disposable bags, dry wipes and other products on request if required.
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.
The Ileostomy and Internal Pouch Association is a charity specifically set up to support people with an ileostomy and they have lots of useful resources.
You may also want to explore Colostomy UK’s comprehensive information (for anyone with any type of stoma, not just colostomies), 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.
