This information is for people with Crohn’s or Colitis who have a stoma or might be getting one. It explains what a stoma is, why you might need one and what different types there are. It covers how to look after your stoma and how to manage common worries about stomas.
We have separate information on Surgery for Crohn’s Disease and Surgery for Ulcerative Colitis.
This information might use words you have not heard before. Our page on medical words can help provide an explanation.
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A stoma is an opening on the wall of your tummy that brings your bowel to the outside. If you have a stoma, the contents of your gut do not travel all the way through your bowel to come out of your bottom. Instead, they come out of the stoma into a bag you wear on your tummy.
An ostomy is another name for a stoma. Some people who have stomas call themselves ‘ostomates’.
If you have a stoma, you’re not alone. Around 190,000 people in the UK have a stoma.
You might need a stoma if you have surgery to remove part of your bowel. Your IBD team might suggest this if:
Some people choose to have a stoma if they feel it will improve the quality of their lives. This might be because they feel it will relieve their symptoms, or because they prefer the idea of a stoma to treatment with medicines. If you are thinking about stoma surgery, talk to your IBD team. You can decide together on whether it is appropriate for you.
Not everybody who has part of their bowel removed needs a stoma. Sometimes, surgeons join the cut ends of the bowel back together straightaway. If you need surgery, your surgeon will talk to you about your options.
There are different types of stoma. They have names based on:
Stomas can be temporary or permanent. About half the people who need a stoma have a temporary one and half have a permanent one.
If you have surgery to remove part of your bowel, the joined ends of the bowel can be delicate and leaky at first. Or sometimes it might not be appropriate to join the bowel straightaway. A temporary stoma keeps the contents of your gut away from the delicate sections of bowel. This gives your bowel time to heal. Once it’s healed, you have more surgery to remove the stoma. This is usually months or sometimes years later. Depending on the type of surgery you’ve had, you might need more than one operation to reverse the stoma. After stoma reversal, you usually have a scar 1 to 2cm longer than the stoma. This might be a straight line or a circle.
Some people decide they do not want to have the stoma reversed. Sometimes, it cannot be reversed.
Initially my stoma was going to be temporary but in time I decided I wanted to keep it. I had got so used to it and the freedom it brought me, I didn't want to jeopardise having my life back. So I made the decision to not have a reversal.
You might have a temporary stoma if you have part of your small bowel or large bowel removed, but you keep your anus.
Some stomas cannot be reversed. These are called permanent stomas. You might need a permanent stoma if:
Some people have a temporary stoma at first but later choose to keep it.
An ileostomy is made from a part of your small bowel called the ileum. A colostomy is made from a part of your large bowel called the colon.
People with Colitis who need a stoma usually have an ileostomy. People with Crohn’s who need a stoma might have an ileostomy or a colostomy, depending on which part of the bowel is affected.
Surgeons make an ileostomy by joining a section of your small bowel to the surface of your tummy. They make a short spout of bowel that sticks out about 2 to 3cm above your skin. This means the contents of your bowel, called your ‘stoma output’, can empty straight into the stoma bag without touching your skin.
Ileostomies are usually low down on the right side of your tummy. But they can be in other places on your tummy depending on the exact surgery you’re having, and your preferences. Your surgeon and stoma nurse will talk to you about where to put the ileostomy before you have surgery. This will include a discussion about your comfort and wellbeing with the stoma.
An ileostomy is red or pink and feels warm and moist when you touch it. It does not have any nerve endings so it does not hurt to touch it.
The output of an ileostomy is usually quite liquid – like a paste or porridge. But this can vary. It also changes depending on what you have had to eat or drink. It does not flow all the time. Wind also comes out of the stoma into the bag. You cannot control when the stoma empties into the bag.
Most people with an ileostomy use drainable stoma bags that you empty down the toilet. You empty them when they are less than half full – usually around 4 to 6 times a day. You often need to empty them during the night too. You usually need to change the bag every 1 to 3 days. Some people prefer to change them more often.
Some people with Ulcerative Colitis might be able to have a ‘continent’ ileostomy. This is also called a ‘Kock pouch’, after the person who first did the operation. The surgeon uses part of your small bowel to make an internal pouch that can store your bowel contents. They attach this to an ileostomy with a valve that does not let the contents out. So you do not have to wear a bag. Instead, you use a special tube to empty the ileostomy into the toilet a few times a day.
Surgery to make a continent ileostomy is complicated. It is not often done in the UK. People who have one often need to have more surgery if the valve stops working properly or if the stoma gets too narrow. But most people who have one say they are satisfied with it even if they need more surgery.
A continent ileostomy is not suitable for people who have Crohn’s.
Surgeons make a colostomy by joining a section of your large bowel to the surface of your tummy. A colostomy is often quite flat to your skin, or only sticks out a small amount.
Colostomies are usually low down on the left side of your tummy. But they can be in other places on your tummy depending on the exact surgery you’re having, and your preferences. Your surgeon and stoma nurse will talk to you about where to put the colostomy before you have surgery. This will include a discussion about your comfort and wellbeing with the stoma.
The output of a colostomy is usually semi-solid and can be like normal poo. But this varies depending on how much of your large bowel you have left. If you do not have much large bowel left, the output will be more liquid. Your stoma output also depends on what you’ve had to eat and drink. Many people say their colostomy gets into a pattern of being active at certain times of the day or a certain length of time after they’ve eaten. But you do not have any control over when the stoma empties into the bag. Wind also comes out of the stoma into the bag.
Most people with a colostomy use sealed stoma bags that you change when they are a third to a half full. Drainable bags are not usually suitable because the stoma output is too solid. You usually need to change a colostomy bag 1 to 3 times a day, but this varies from person-to-person.
Some people with a colostomy might be able to wash out (irrigate) their bowel through their stoma instead of wearing a bag. This involves using a special tube to wash out the poo with warm water. It can take around an hour and you usually have to do it every day. In between, you wear a cap to cover your stoma. If you think this might suit you, talk to your stoma nurse.
Do not irrigate your stoma unless your stoma nurse has taught you how to do it properly.
Stomas can be made from:
Loop stoma |
End stoma |
 |
 |
A loop stoma is made when a surgeon brings a loop of bowel to the surface of the tummy. They make an opening in the wall of the bowel and use this to make a spout that they stitch to the skin of your tummy. The contents of your bowel pass through the spout into your stoma bag. Bowel contents do not go through the other end of the loop, although you can sometimes get some overspill into the part of your bowel that is not being used. The lining of your bowel can also make mucus. So you might pass some mucus through your back passage. This can be poo-stained.
Loop stomas are usually temporary. They can be made from:
An end stoma is formed from the cut end of the bowel. The surgeon brings the end of the bowel to the surface, folds it over and makes a spout that they stitch to the skin of your tummy. The rest of your bowel is not connected to the stoma, so your bowel contents can only pass through the stoma. They cannot move on through the rest of your bowel.
The lining of any bowel you have left can make mucus. So if you still have a back passage, you might pass some mucus.
End stomas are usually permanent. They can be made from:
Before you have a stoma, your IBD team will talk to you about your treatment options. You usually have time to ask questions and talk to other people before deciding.
If you need to have all of your large bowel taken out, including your rectum, you might be given the choice between having a stoma or having pouch surgery. Your rectum is the very end of your gut that joins your large bowel to your back passage.
If you need to have your large bowel taken out but you are keeping your rectum, your surgeon might be able to join your small bowel directly to your rectum.
You can find out more about pouch surgery and ileo-rectal anastomosis in our information on Surgery for Ulcerative Colitis.
Most stoma surgery is planned in advance. You will meet your surgeon or specialist stoma nurse to talk about the surgery and what it’s like to have a stoma. This might be at your usual hospital, or you might be referred to a different hospital.
Your stoma nurse or surgeon will ask about your lifestyle so you can discuss how having a stoma might affect you. They will cover things like:
They should give you written information to take away with you. They might also give you some stoma bags to practise with. Trying out a stoma bag before your surgery might help you feel less anxious. It can also help make sure you’re happy with where your stoma will be.
You will have a chance to ask any questions you have. The surgeon or stoma nurse might be able to arrange for you to meet someone who already has a stoma.
Your stoma nurse or surgeon will talk to you before your surgery about where on your tummy your stoma will be. About 1 in 5 stomas are done as an emergency. In this case, there might not be time to plan where you will have your stoma beforehand.
An ileostomy is usually low down on the right side of your tummy. A colostomy is usually low down on the left side of your tummy. But they can be in other places.
Your surgeon or stoma nurse will look at your tummy to help choose the best place. They try to avoid areas of skin that have creases, scars or folds. They will try to place your stoma out of the way of the waistbands of your clothes. They will also talk to you about things that are important to you. This includes cultural or religious beliefs that might affect where you’d like to have your stoma. And practical issues, like being able to see your stoma well and reach it easily. It might not always be possible to have the stoma exactly where you’d like it.
Once you’ve agreed on the best place for your stoma, your stoma nurse or surgeon will mark it on your skin with a pen. They will check that you’re happy with it.
We offer a stoma supply home delivery service, in partnership with Bullen Healthcare, an independent dispensing appliance contractor. Visit Crohn’s & Colitis Healthcare Direct for more information.
Your stoma nurse will talk to you about the stoma supplies you’ll need and explain the different options. You can also get information from stoma supply companies. Many of these have telephone helplines and information on their websites.
You get your stoma supplies on prescription. When you’re in hospital, your stoma nurse will give you the supplies you need. You need a prescription to get more. Your stoma nurse might be able to prescribe these for you. They will also let your GP know exactly what supplies you need. Your GP will prescribe your supplies once you’re at home, based on what your stoma nurse has recommended. If you need to change your prescription or order a different amount, check with your stoma nurse to make sure they’re happy with the change.
In Scotland, Wales and Northern Ireland, prescriptions are free. So you do not have to pay for your stoma supplies.
In England:
You can get your stoma supplies from a pharmacy or from a stoma supply company that delivers to your home. You can choose whichever suits you better. It’s important not to order too many supplies in one go. Otherwise you might end up with a lot of wastage if your needs change.
Order your supplies in plenty of time so you do not run out.
You can get different types of stoma bag. They come in lots of shapes and sizes. Some are clear so you can see the stoma output. Others are not.
The stoma bag that is right for you depends on:
Your stoma nurse will help you find a bag that works for you. Sometimes, you might need to change to a different bag. For example, your tummy might be swollen after surgery and you might need a different bag once the swelling goes down. Or your stoma might change shape over time and a different bag could work better for you.
Stoma bags are made up of:
In one-piece systems, the baseplate and bag are joined together. You use a new baseplate and bag every time you change your bag. This might be suitable if you change your bag once a day or less.
In two-piece systems, the baseplate and bag are separate. The bag attaches to the baseplate with a ring or adhesive. You can leave the baseplate on your skin for up to 4 days and change the bag as often as you need. If you need to change your bag several times a day, a two-piece system is probably a better option for you than a one-piece.
Bags can be closed or drainable.
Bags come in different shapes and sizes. You might use different ones at different times. For example, some people like to use smaller bags that sit flatter against their skin if they are going swimming.
Bags can also come in different shapes.
This varies from person-to-person. But in general:
Every stoma is different and every body shape is different, so there are lots of products available to help you manage your stoma. You can get many of these on prescription if your stoma nurse has recommended them for you.
Products your stoma nurse might recommend include:
It can take time to become confident looking after your stoma. But with practice, most people get into a routine that works for them. Your stoma nurse is there to help you. They are usually your main point of contact before surgery, while you are in hospital and once you are back home.
Most people who have a stoma say they can tell when their bag needs emptying or changing from the weight of it.
Your stoma nurse should come to see you the day after your surgery. They will check on your stoma and the skin around it. They will help you choose a stoma bag that is right for you and show you how to change it.
To start with, I was very self-conscious about my stoma and constantly worried if people could see it through my clothes. Now, I hardly think about it and sometimes forget it's even there. Taking care of it is like second nature and I don't let it stop me from doing any of the things I want to do. I live a very active live, not in spite of but because of my stoma and the stability it's given me.
While you are in hospital, your stoma nurse will also talk to you about:
They will give you written information, and give you details of organisations or support groups that you might find helpful.
They will check how well you are adjusting to having a stoma. If you need it, they can refer you for counselling.
Before you go home, your stoma nurse should:
If you have any questions or concerns, tell your stoma nurse. Make sure you have their contact details.
In the first few months after you go home, your stoma nurse might:
They will check your stoma is healthy and your stoma supplies are suitable. They will make sure you feel confident looking after your stoma. They will also talk to you about how you are adjusting to your stoma in your day-to-day life, including your relationships.
Once you’re confident looking after your stoma, you’ll have a review once a year with your stoma nurse. But you can contact them in between if you have any issues.
If you need to change your stoma supplies, your stoma nurse should let your GP and hospital team know.
You become so in tune with your stoma. I know instantly when there’s the slightest leak or blockage, I know what she likes or dislikes to eat, sometimes she likes to be hidden, sometimes she likes to be on show – it all depends upon my mood!
It’s important to look after your stoma and make sure the skin around it stays healthy. Check it when you change your bag. Stomas are usually pinkish-red and about the size of a 50p piece. They can sometimes change size or shape, especially if your weight changes.
Your stoma might bleed slightly when you change your bag. This is common. The bleeding should stop quickly. But if the blood is coming from inside your bowel, contact your stoma nurse.
Contact your stoma nurse if you are worried about any changes to your stoma or the skin around it.
I often get funny looks or rude remarks made if I use a disabled toilet - but I need to use a disabled toilet for when I change my stoma bag. Rather than be angry at the person, I try to explain to them why I’m using this particular toilet, and that not all disabilities are visible.
If you have a stoma, you are entitled to use accessible toilets. Some accessible public toilets are kept locked. You need a Radar key to open these. Crohn’s & Colitis UK members can request a Radar key as part of their membership package. You can also buy keys from The Radar Key Company or Disability Rights UK.
The instructions below are for people with a one-piece system, or for people with a two-piece system who are changing both their bag and baseplate.
You could wear disposable gloves when you change your bag. This might be helpful if you are Muslim and you wish to keep your right hand clean. Or you could try changing your bag one-handed, although this can be difficult.
I felt, since having an ileostomy, that I was not worthy enough of praying because I felt that no matter how much I cleaned out my bag there would always be some form of wastage left in. I decided to speak to a notable Imam (teacher) in my local town, who reassured me and explained that emptying the bag was enough. My feelings of impurity were perhaps misplaced. The Imam told me there is flexibility to accommodate a variety of circumstances and I should pray as normal.
Having a stoma does not mean you cannot enjoy eating and drinking. Once you’ve recovered from surgery, you should be able to eat a normal, balanced diet. If you follow a particular diet for cultural, religious or ethical reasons, you should still be able to do this. But there might be some foods or drinks that make your stoma more active or give you bad wind. This is different for everyone. Foods that are OK for you might not be for someone else, even if they’ve had the same surgery as you.
It can take a while for your gut to recover from stoma surgery. At first, you might not feel like eating much. While you’re in hospital, your healthcare team will help you gradually increase the amount you eat and drink.
You might find it easier to start with plain, light foods that are easy to digest. It can help to eat five or six small meals a day instead of a few larger ones. You can add new foods gradually, to find out what works for you. If a food causes problems with your stoma, you could stop eating it for a while and then try it again. If it still causes problems after a few tries, you might want to avoid it in future.
Some foods or medicines, like beetroot, strawberries, food colouring or iron tablets, can change the colour of your stoma output. This is not harmful but it might be worrying if you’re not expecting it. You do not need to avoid these foods if they are not causing problems with your stoma.
We have more information on Food for people living with Crohn’s and Colitis.
If you have an ileostomy, food passes through your small bowel but not your large bowel. Most of the goodness from food is absorbed in your small bowel. The large bowel is where water and salts are usually absorbed. As you recover from surgery, your small bowel slowly adapts and gets better at absorbing water and salts. But your stoma output will still be quite runny, and you lose more salt from your body than you used to.
Some people with an ileostomy can develop short bowel syndrome. This is when the amount of bowel you have left is too short to absorb food and water properly. If you have short bowel syndrome, your symptoms might get worse if you drink too much. Your IBD team can tell you if you have short bowel syndrome, and how to manage it.
Most people with an ileostomy can eat a healthy diet without problems. But you will need to drink more than you used to so you do not get dehydrated. You might also need to add extra salt to your food – about a teaspoon a day is recommended. This is especially important in hot weather, when you also lose salt and water in your sweat.
If you want to, you can drink caffeine and alcohol (within healthy limits). But they can increase your stoma output. Fizzy drinks might cause more wind in your stoma bag.
I always drink plenty of fluids to help keep the output a porridge consistency. I find if I do not drink enough then output slows and blockages are more likely. If I get a blockage I have a drink and gently massage the area around the stoma, which helps move the output into the bag. Moving around also helps.
Fibre is not absorbed in your small bowel. So high-fibre foods, like wholegrain foods, raw fruit and vegetables, beans or lentils, can increase your stoma output. You might notice some foods, like sweetcorn, pass into your stoma bag undigested. You might have to empty your bag more often if you eat a lot of fibre. Some people notice that certain foods cause a lot of wind in their stoma bag.
An ileostomy is quite narrow, so some foods might cause blockages. Chewing your food well helps prevent this. You might want to avoid small, hard foods like sweetcorn, nuts and seeds. Peeling and cooking fruit and vegetables, and only eating small amounts of raw fruit and vegetables, can also help.
Once you have recovered from surgery, you should be able to eat a balanced, healthy diet. If you want to, you can drink caffeine and alcohol (within healthy limits). But they might make your stoma output more liquid. Fizzy drinks might cause more wind in your stoma bag.
Having a stoma should not stop you doing the things you did before your surgery. But you will take time to adjust to your stoma, the changes in your body, and how you feel about it. Everyone deals with their stoma differently and how it affects you will be personal to you. With time, you will find out what works for you. Your stoma nurse and your IBD team are there to help you.
Once they’ve adjusted to it, most people find that living with a stoma is much better than they expected. Many people find it a positive experience. No longer being in pain or having diarrhoea means they can do more of the things they did before they had Crohn’s or Colitis. They also say they feel more confident leaving the house, knowing they will not have to rush to the toilet.
Long gone are the days when stomas and bags were reserved for the elderly - check out all the positive stoma role models on social media. Young, fit, vibrant, living their best lives! Be proud of your bravery and own your story!
Talking to family and friends can help you feel more positive about your stoma Most people also find it helps to talk to others who have a stoma, especially if they are at a similar stage in their life. Some people tell us they find it helpful to look on social media for positive role models who have stomas. You might like to read some of our blog posts about life with a stoma, like Anna’s story, Lauren’s story or experiences of men with stomas.
You could join a stoma support group, where people share their experiences. Ask your stoma nurse if there are any in your area, or any virtual support groups you could join.
Some people who have spiritual beliefs find these can help them adjust.
Having a stoma is a big change and it can affect how you feel. Many people have difficult feelings at first. You might feel low, angry or hopeless, or that you have lost control over your body. You might find it especially difficult if you had your stoma surgery as an emergency, without the chance to get used to the idea beforehand. Some people might become depressed.
I had an emergency ileostomy in 2011. At that time I had never even heard of Crohn’s or Colitis. It was a long and challenging journey, but with the support of family, friends and IBD nurses I have grown in confidence to show my body and scars. I have named my stoma Joey and talk about him to work colleagues, family, friends and on social media.
It can take a long time to come to terms with what you have been through and to manage your stoma alongside the social, sexual and work aspects of your life.
Your stoma nurse is there to help you with all aspects of having a stoma, including your feelings.
When I looked in the mirror after surgery I saw a completely different person. I would say affirmations to myself to help me mentally deal with this lifestyle change. I got back into exercising to help my body confidence and feeling like myself again.
Talking therapies can be very effective at helping you adjust to your stoma. Your GP or stoma nurse can help you access these. But the waiting lists can be long.
We have more detail on talking therapies in our information on Mental health and wellbeing.
Having a stoma can affect how you see yourself and how you feel about your body. At first, you might feel shocked or upset by the change to your body. Or you might feel positive about your stoma if you no longer have symptoms of Crohn’s or Colitis.
I couldn’t even look at my bag when I first got it; I felt ugly and disgusting. I now appreciate it more than ever as I know I wouldn’t be here without it, but this doesn’t mean I don’t have difficult days.
Other people cannot usually see the stoma bag under your clothes. Emptying your bag regularly helps it lie flat against your body so it cannot be seen. Some people like to wear support belts or clothes with high waists, to help keep the bag flat against the body. You can also get underwear and swimwear specially designed for people who have stomas.
You should be able to wear the same clothes you wore before surgery. But some people choose to wear looser or tighter clothes to help hide the bag. Others are comfortable having their stoma on show. This is a personal decision. Do what feels right for you.
I went through a 9 hour operation to have my colon removed, so I was conscious of how I’d look and what my body would look like post-op. I now love it.
Getting out and about might help you feel more confident about your body. Talking about how you feel may also help. If you find it tricky to start the conversation, you could try using our It Takes Guts resources.
If you are struggling to adjust, talk to your stoma nurse or IBD team. They are there to support you.
Many people worry about how a stoma might affect their sex life. You might be worried about starting a new relationship. Or you might be anxious about how your partner will react to your stoma. Having a stoma should not stop you having an active sex life if you want one. But it can take time to adjust. Some people find that having a stoma improves their sex life because they no longer have symptoms.
Any person who didn’t want to love me because of my stoma is not good enough for me anyway. We rock the world together, me and my little lifesaver!
People with a stoma usually find their partners are not put off by it. As long as your bag is attached well, it should not get in the way of sex. If you’re worried it might leak, try to empty it beforehand. You could choose a smaller, more discreet bag when there’s a possibility you’ll have sex. You can also buy attractive stoma covers and lingerie designed for stomas, which may help you feel more confident.
Do not use your stoma for sex. Bowel tissue is very fragile and can easily be damaged.
We have separate information about Sex and relationships. This has more about how a stoma might affect your sex life, and when you might choose to tell someone you’re dating about your stoma.
Some people worry whether having a stoma will affect their fertility. Most people with Crohn's or Colitis have similar fertility levels to the general population. But surgery to the tummy or pelvis can sometimes cause scarring, which could affect your fertility. If you’re planning to become pregnant, it’s a good idea to talk to your surgical team about this. Find out more in our information on Reproductive health.
Your fertility might be lower if you are in a flare. If you plan to start a family, try to wait until your Crohn’s or Colitis is under control.
If you get pregnant, tell your stoma nurse early. They can talk to you about how being pregnant might affect your stoma and how having a stoma might affect your pregnancy.
When you are pregnant, your stoma might change size or shape. Some women develop a hernia or prolapse when they are pregnant.
Rarely, your stoma might get blocked during your pregnancy. Your stoma nurse will tell you what to look out for and when to get advice.
Some people who have a stoma give birth naturally. But around 3 in 4 have a caesarean section. This is usually planned in advance. Emergency caesareans are no more common in people with a stoma than in other women. Your obstetric team will talk to you about the best option for you.
Babies born to women who have a stoma are usually healthy. But they are more likely to be born early and to be smaller than babies born to other women. This might be due to Crohn’s or Colitis flares.
You are not likely to get a stoma when you are pregnant unless you need surgery urgently. If this is the case, you will only have surgery if your Crohn’s or Colitis is a greater risk to your baby than the surgery.
Find out more in our information on Pregnancy and breastfeeding.
If you want to have sex but not get pregnant, think about what contraception to use. If you have only have a small section of bowel left, or you have a high stoma output, you might not absorb tablets properly. This means that contraceptive tablets might not work. But there are many other types of contraception that may suit you. For more details, have a look at our information on Reproductive health. This covers contraception choices.
Ask your GP or stoma nurse for advice on contraception.
When you go home after surgery, you will probably be able to walk around and do light tasks. You will feel tired to start with but gentle exercise can help build up your energy levels.
I'm nearly 4 weeks post-surgery and amazed that I'm on no medication, not in any pain and able to eat normal food again. I can't wait to get back into exercising. I am trying to increase my walk distance each day and introducing more body weight exercises into my routine. I am trying to focus on upper and lower body exercises which don't target my abdomen too much, and the walks are helping me build my stamina back up.
Once you have recovered from surgery, your stoma nurse or physiotherapist might give you exercises to build up your tummy muscles. This helps prevent a hernia (a bulge under the skin around your stoma that can happen if some of your bowel pushes through the gap in your muscles where you had surgery).
Having a stoma should not stop you doing the sports you enjoy. In fact, many people find they can get back to doing the things they used to before they were ill. Build up the amount of exercise you do gradually. For heavier activities, you could wear a belt or girdle to support your stoma and tummy muscles.
Stoma bags are waterproof so you can go swimming. You can get filter covers to stop the filters getting wet. If you want to cover up your stoma bag, you can buy covers in different colours and patterns. You can also get swimwear that is specially designed for people who have a stoma. If you have a colostomy, you could use a stoma plug while you’re swimming. Your stoma nurse can give you information about these.
If you are going back to work after having a stoma, it’s a good idea to talk to your employer about how they can support you. Some people worry how their employer or colleagues might react if they tell them they have a stoma. But most people find that telling people helps them understand their needs.
You might have had a long time off work before having your stoma. You might be looking forward to returning. But you might also feel anxious. When you first go back, you could ask for a phased return. Or you could ask for lighter duties to begin with. Some people work out a routine that means they do not have to change their bag too often at work.
We have information about employment for people living with Crohn’s and Colitis in our Guide for employees. We also have a Guide for employers, which you could show your manager or HR department.
If you, or your child, are returning to education after having a stoma, you may want to contact staff to discuss what support you or your child need. You might find our information for schools, colleges and universities helpful. Or Colostomy UK have a Junior Ostomy Support Helpline (JOSH) that provides support for parents and carers of young people living with a stoma.
Having a stoma should not stop you travelling, but it takes a bit more planning. Often people find that travelling is easier with a stoma than it was when they had Crohn’s or Colitis symptoms.
Ask your surgical team how long you should wait after your stoma surgery before it is safe to drive. You should also check with your car insurance company. If you are travelling as a passenger, it’s sensible to make sure you can move around easily and sit comfortably before going on a trip.
The UK Civil Aviation Authority recommends that you do not fly for 10 days after having abdominal surgery. This is to reduce your risk of complications. You are likely to need a ‘fit-to-fly’ certificate or medical information form from your doctor if you plan to fly sooner. You usually pay for this. It’s a good idea to take your stoma supplies in your hand luggage, in case your hold luggage is delayed or lost.
We have more information about Travelling with Crohn’s or Colitis, which covers holidays, business trips and longer travel. It includes information for people who have a stoma.
If you have a stoma, your body might not fully absorb tablets or capsules. Instead, they might pass straight through your gut and come out into your stoma bag. Slow-release tablets and capsules are not suitable for people who have a stoma. Liquids, uncoated tablets or tablets that dissolve in water may work better. Your GP or pharmacist can advise you on what medicines are suitable for you.
If you have any of your large bowel left after your stoma surgery, you could get Crohn’s or Colitis in the remaining bowel. There is also a chance you could get cancer in the bowel you have left. This means you might still need to have colonoscopies. In this case, you have the colonoscopy through your stoma instead of through your back passage. Colostomy UK have a booklet about having a colonoscopy through a stoma (PDF).
We have separate information on the risk of bowel cancer in people living with Crohn’s or Colitis.
If you receive a bowel cancer screening test by post (a ‘FIT’ test), call the government’s free helpline on 0800 707 60 60. They can check whether it is appropriate for you to do it. If you cannot call the government helpline, you could ask your GP.
People who have a stoma can also have other health conditions. This might affect their ability to manage their stoma. In particular, having dementia can make it hard to look after a stoma.
Before having a stoma, people are often worried about leaks, smells, how visible the bag is and how it will affect their everyday life. Most people who have a stoma agree that it is almost always better than they expected. But even when you are confident looking after your stoma, you are likely to have issues from time to time. We cover some of the common problems here. Your stoma nurse will also tell you what to look out for and what to do if you have problems.
Bags can leak if there is not a good enough seal between the baseplate and your skin. This might happen if the baseplate does not fit the shape of your body or fit snugly around your stoma. It can also happen if you lose or gain weight or if the shape of your stoma changes. It can be upsetting when your stoma leaks. But it does not usually happen often.
To help prevent leaks:
If you are having problems with leaks, contact your stoma nurse for a review. You might need to switch to different stoma supplies.
Your stoma nurse will check your stoma to find out why your bags are leaking. They can recommend stoma supplies that might help prevent any more leaks. This might include:
It’s important to make sure the skin around your stoma stays healthy. It should look the same as the skin on the rest of your body. But sometimes, you might get problems, like:
I had constant soreness and itchiness with the skin around my stoma. But the stoma nurses were great in finding alternative options and now everything is much better.
If your skin is sore, contact your stoma nurse for a review. They will check that your stoma bag fits snugly around your stoma. They can also recommend products to help protect your skin.
As well as your stoma output, wind or gas pass from your bowel into your bag. You do not have any control over when this happens. Although it is sometimes noisy, most people find it’s less of a problem than they thought it would be. Stoma bags have filters that absorb smells and let the wind escape.
Some people notice that certain foods cause a lot of wind or gas. Avoiding these can help reduce the amount of wind going through your bowel. You might need to experiment to find out what foods are a problem for you. Things like broccoli, beans and cheese cause wind for some people. Fizzy drinks and high-fibre foods can also cause wind. Taking in lots of air through smoking, chewing gum, drinking through a straw or sucking sweets might also increase the amount of wind in your gut.
If wind builds up in your bag, it is called ‘ballooning’. If this happens regularly, contact your stoma nurse. They might suggest changing to a bag with a better filter. If you use closed bags, you could try switching to drainable bags so you can let the wind out.
If you have an ileostomy, you might sometimes get more output from your stoma than usual. This means you have to empty your bag more often, especially at night. And the output might be more watery. This can happen if:
If this happens, carry on drinking. Sports drinks or rehydration drinks such as Dioralyte are better than plain water. You can buy rehydration drinks from a pharmacy or supermarket. Or you can make your own by adding 6 teaspoons of sugar, 1 teaspoon of salt and half a teaspoon of sodium bicarbonate or sodium citrate to 1 litre of water. This is called St Mark’s solution. You can add flavouring if you want. Eating salty foods will also help replace the salt you lose through your stoma.
Eating foods that thicken your stoma output might help. Starchy, low-fibre foods like white rice, bread, pasta, noodles and peeled cooked potatoes are good. Foods containing gelatine, like marshmallows or jelly, can also help. But these are made with pork or beef and are not suitable for people who do not eat pork or beef products.
If your stoma output stays high, you might get dehydrated.
Contact your hospital urgently if your output is more than 2 litres a day for 3 days or more.
Signs of dehydration include:
Contact your stoma nurse if you get any of these symptoms.
They can advise you on the best things to eat and drink. They might also recommend anti-diarrhoeal medicines, like loperamide, or thickening sachets to put in your bag.
We have separate information about Dehydration.
If you have a colostomy, you might get diarrhoea or constipation.
Diarrhoea could happen if:
Eating foods that thicken your stoma output might help. Starchy foods like white rice, bread, pasta, noodles and peeled cooked potatoes are good. If your diarrhoea does not get better, your stoma nurse might recommend anti-diarrhoeal medicines, like loperamide.
Sometimes, you might get constipated. You can help prevent this by:
If your constipation does not get better, contact your stoma nurse. They might prescribe medicines to help, or suggest washing out (irrigating) your colostomy.
We have separate information on Diarrhoea and constipation.
Some people with a colostomy find that their output collects around the neck of the stoma bag and does not fully drop down inside the bag. This is called pancaking. It can happen if your output is very thick or if the insides of your bag stick together and stop the output getting in.
To help prevent pancaking, you could try:
If you have a problem with pancaking, tell your stoma nurse. They might suggest switching to a different bag.
An ileostomy is quite narrow and can sometimes get blocked. Signs you might have a blockage include:
If your stoma is blocked, drinking lots of fluid and not eating for a while might be enough to clear the blockage. Moving around, massaging your tummy or having a warm bath can also help. After the blockage clears, your stoma might be more active than usual.
If your tummy pain gets worse or you are sick, go to your nearest A&E department.
A hernia is a bulge around your stoma. It happens if some of your bowel pushes through the gap in your tummy muscles around your stoma. Up to 1 in 3 people with a stoma get one.
You can help prevent a hernia by:
If you think you might be getting a hernia, contact your stoma nurse for advice.
If you have a hernia, it might help to wear a support belt or girdle to support your tummy muscles. You might also need to switch to a different bag to fit the shape of the bulge better. If your hernia is causing lots of problems, you might need surgery to fix it.
Stoma bags have filters that absorb smells. Your bag should not smell except when you change or empty it. If you are worried about leaving a smell, you could use a regular air freshener. People who have a stoma say that other people do not seem to notice any smell.
If you are having problems with smells, check the seal between the baseplate and your skin. Changing your bag more often might also help. Some people notice that certain foods make their bag smell, so you could try avoiding those.
If the problem does not get better, talk to your stoma nurse. You can get deodorising sprays or powders that go in your bag. You might need to change to a bag with a better filter.
We follow strict processes to make sure our information is based on up-to-date evidence and easy to understand.
Please email us at evidence@crohnsandcolitis.org.uk if:
You can also write to us at Crohn’s & Colitis UK, 1 Bishop Square, Hatfield, AL10 9NE, or contact us through our Helpline: 0300 222 5700
A service for people living with a stoma, offering discreet and efficient delivery of your stoma products, as well as your prescription medications.
Click here to register your interest and claim your free stoma support pack.
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We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.
Our helpline team can help by:
Providing information about Crohn’s and Colitis.
Listening and talking through your situation.
Helping you to find support from others in the Crohn’s and Colitis community.
Providing details of other specialist organisations.
Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.
Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).
If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.
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