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Finding out that you need to have a stoma can be a lot to deal with. You might have questions about what this means for you and your future. But you’re not alone, we’re here to help. This information is for people with Crohn’s or Colitis who have a stoma or might be getting one. This information looks at:
Where we use ‘Colitis’ in this information, we are referring to Ulcerative Colitis only. People with Microscopic Colitis are unlikely to have a stoma.
We have separate information on surgery for Crohn’s Disease and surgery for Ulcerative Colitis. Our information on surgery includes what to expect on the day of your operation and what your recovery might look like.
This information might use words you have not heard before. Our page on medical words can help provide an explanation.
We need your help to improve our information to better support people with Crohn’s and Colitis. Fill in our short survey to let us know what we're doing well and how we can better meet your needs.
There are different types of stoma. They have names based on:
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. This will depend on which part of the bowel is affected.
Your surgeon and stoma nurse will talk to you about where to put your stoma before you have surgery. This should include a discussion about your comfort and wellbeing with the stoma.
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.
Ileostomy |
Colostomy |
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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 2cm to 3cm above your skin. This means the contents of your bowel, called your ‘stoma output’, can empty straight into stoma bag.
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.
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. Gas 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. This is 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.
Surgeons make a colostomy by joining a section of your large bowel to the surface of your tummy. A colostomy is often flat against 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.
The output of a colostomy is usually semi-solid and can be like normal poo. But this depends on how much of your large bowel you have left after surgery. 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 for a certain length of time after they’ve eaten. But you do not have any control over when the stoma empties into the bag. Gas also comes out of the stoma into the bag.
Most people with a colostomy use sealed stoma bags that they change when they are 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, or 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.
If you have surgery to remove part of your bowel, the joined ends of the cut bowel can be delicate and leaky at first. Or sometimes it might not be appropriate to join up 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 and join up the bowel. This is usually months or sometimes years later. Some people decide they do not want to have a temporary stoma reversed.
You might have a temporary stoma if you have part of your small bowel or large bowel removed, but you keep your anus. The anus is the opening where poo comes out of your body. 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 1cm to 2cm longer than the stoma width. This might be a straight line or a circle.
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.
Louise
Living with a stoma for Colitis
Some people living with a temporary stoma choose to not have their stoma reversed. There are lots of different reasons you might choose to do this, these include:
Deciding whether to have a stoma reversal is a personal decision, and it can take time to decide what is right for you. It’s important to remember there is no right or wrong answer, and everyone is different. Talk to your IBD team or stoma nurse about your options. They can help support you in making this decision.
Some stomas cannot be reversed. These are called permanent stomas. You might need a permanent stoma if:
Stomas can be made from:
Loop stoma |
End stoma |
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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 an opening in 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 bottom. 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 an opening in 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. It 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 an anus, you might pass some mucus.
End stomas are usually permanent. They can be made from:
You might need a stoma if:
Not everybody who has part of their bowel removed needs a stoma. Sometimes, surgeons join the cut ends of the bowel back together straightaway.
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 over 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.
Stoma surgery is a really daunting thing to go through. Before, I couldn’t go to the toilet without being in excruciating pain. Crohn’s disease took away my quality of life. When I got my loop ileostomy I was 12 years old and it gave me my life back, I can now do more than I ever thought I would be able to!
Romana
Living with Crohn's
Around 1 in 5 stomas are made as an emergency. Getting a stoma is a big change for anyone. But having emergency surgery means you do not have a chance to prepare mentally or physically. You might find our information section on your emotions helpful.
If you need to have all 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 bottom.
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 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. You should have time to ask questions and talk to other people before deciding.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. If your stoma is made as an emergency, there might not be time to plan where you will have your stoma beforehand.
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. Also 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.
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.
Samantha
Living with a stoma for Crohn’s
Crohn’s & Colitis UK offer a stoma home delivery service in partnership with Bullen Healthcare. You can visit Crohn’s & Colitis UK Healthcare Direct for more information.
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.
The stoma bag that is right for you depends on:
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.
A two-piece stoma system
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Closed bags are sealed. You cannot empty them. Closed bags are suitable for people who have fairly solid output, usually from a colostomy.
Drainable bags have a Velcro fastening or clip that lets you empty the contents without having to change the bag. You only need to change the bag every 1 to 3 days. They are suitable for people who have liquid output, usually from an ileostomy.
A one-piece drainable bag
Bags come in different shapes.
Bags also come in different 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.
This varies from person to person. But in general:
Every stoma and every body shape is different. There are lots of products available to help you manage your stoma.
Products your stoma nurse might recommend include:
A support belt
When you’re in hospital, your stoma nurse will give you the supplies you need. Once these run out, you’ll need a prescription to get more. Your GP will prescribe your supplies when 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.
You can get your stoma supplies from a pharmacy, or from a stoma supply company that delivers to your home. You can choose what suits you better. Order your supplies in plenty of time so you do not run out. If you find you run out of supplies, contact your supplier or pharmacy. Out of hours pharmacies may also be able to help. You can find a pharmacy using the NHS website.
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. Unused and unwanted stoma supplies can be donated to charity. Colostomy UK has more information on this.
If you must pay for your prescriptions it might be cheaper to get a prescription prepayment certificate.This is usually cheaper if you have more than one or two things on prescription each month.
If you are on a low income, you can apply to the NHS Low Income Scheme for help with prescription costs.
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.
Your stoma nurse can also talk to you about:
Before you go home, your stoma nurse should:
You may also want to ask your stoma nurse about:
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!
Louise
Living with a stoma for Colitis
In the first few months after you go home, your stoma nurse might:
They will check that your stoma is healthy and that your stoma supplies are right for you. If you need to change your stoma supplies, your stoma nurse should let your GP and hospital team know. 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.
Guidelines recommend that you should have access to a stoma nurse, even if you’ve had a stoma for a long time.
These instructions 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.
Muneeb
Living with a stoma for Crohn's
If you have a stoma, you can 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. You can also buy keys from Disability Rights UK.
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. Do not cut foods out of your diet without talking to your dietitian or IBD team.
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. Most people with an ileostomy can eat a healthy diet without problems.
High-fibre foods, like wholegrain foods, raw fruit and vegetables, beans or lentils, might 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 gas in their stoma bag.
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.
An ileostomy is quite narrow, so some foods might cause blockages. Chewing your food well helps to prevent this. You might want to avoid small, hard foods like sweetcorn or nuts. Peeling and cooking fruit and vegetablescan also help.
If you have an ileostomy, food passes through your small bowel but not your large 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 may lose more salt from your body than you used to.
You will need to drink more than you used to, so you do not get dehydrated. Around 2 litres a day is recommended. You might also need to add extra salt to your food, about a teaspoon a day overall 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 gas in your stoma bag.
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, you might be told to limit drinks like tea, coffee or water. This is because your symptoms might get worse if you drink too much of these liquids.
Your IBD team can tell you if you have short bowel syndrome, and how to manage it.
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 gas in your stoma bag.
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!
Louise
Living with a stoma for Colitis
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.
Having a stoma is a big change, and it can affect how you feel. It is natural to feel lots of different emotions after stoma surgery. Many people have difficult feelings at first. You might feel low, angry or hopeless, or that you have lost control over your body. Some people grieve the future they thought they’d have.
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.
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. You might also find it helpful to talk to someone who has a stoma. The Ileostomy & Internal Pouch Association can provide further support.
Some people might become depressed after stoma surgery. It can be helpful to recognise your feelings and understand what you can do if this happens. You might find our information on mental health and wellbeing useful to support you with this. This information also looks at anxiety and how you can look after your mental health.
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 details on talking therapies in our information on mental health and wellbeing.
Having a stoma completely changed my life – but over time, I found a way to turn that experience into something positive through my art. I started creating stoma-inspired characters to help express feelings I couldn’t always put into words. I hope younger people especially can see that even with a stoma, you can still be creative, unique and proud of who you are.
Natalie
Living with Crohn’s
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.
Anna
Living with a stoma for Crohn’s
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 clothing that hides the bag. Others are comfortable having their stoma on show. This is a personal decision. Do what feels right for you.
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 Talking Toolkit.
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!
Louise
Living with a stoma for Colitis
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 your bag 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.
Some people with a stoma may not be able to have anal sex, depending on which part of their bowel was removed. We have separate information about this in our sex and relationships resource. It also covers how a stoma might affect your sex life, and when you might choose to tell someone you’re dating about your stoma.
Many people living with Crohn’s or Colitis are as fertile as people who are not living with Crohn’s or Colitis. But some people worry whether having a stoma will affect their ability to have children.
Surgery to the pelvis can sometimes cause scarring. For women, this can affect their fertility. For men, this can lead to difficulties with getting an erection or ejaculating. If you’re planning to have a child, it’s a good idea to talk to your surgical team about this. You can find out more in our information on reproductive health and fertility.
When you are pregnant, your stoma might change size or shape. Some women develop a hernia or prolapse when they are pregnant. A hernia is a bulge under the skin around your stoma. It happens if some of your bowel pushes through the gap in your tummy muscles around your stoma. A prolapse is when part of your bowel sticks out of your stoma.
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 vaginally. But around 3 in 4 have a caesarean section. This is usually planned. Emergency caesareans are no more common in women with a stoma than in women without. Your 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 flare-ups.
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.
You can find out more in our information on pregnancy and birth.
If you want to have sex but not get pregnant, you can think about what contraception to use. If you have only 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, our information on sex and relationships covers contraception choices.
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.
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 hernia is when some of your bowel pushes through the gap in your muscles where you had surgery and causes a bulge under the skin.
Having a stoma should not stop you doing the exercise you enjoy. In fact, many people find they can go back to doing the things they used to before their operation. Build up the amount of exercise you do gradually. Do not rush or expect too much of yourself too quickly. For heavier activities, you could wear a belt or girdle to support your stoma and tummy muscles. Your stoma nurse can tell you when you can start playing contact sports again.
Stoma bags are waterproof, so you can go swimming if you want to. You can get filter covers to stop the filters getting wet. Some people like to use a smaller stoma bag when swimming. 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.
Colostomy UK have more information in their booklet: Active Ostomates- Sport and fitness after stoma surgery.
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.
If you have a stoma, you might be classed as disabled under UK law. See the section on stomas and being classed as disabled for more information. If you are classed as disabled, your employer has a duty to make reasonable adjustments. You can find out more about reasonable adjustments 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 need, or your child needs. You might find our information for schools, colleges and universities helpful. Colostomy UK have a young ostomates section on their website. This contains resources for young people and parents affected by stoma surgery.
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.
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 would have the colonoscopy through your stoma instead of through your bottom. 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, also called a ‘FIT’ test, call the government’s free helpline on 0800 707 6060. 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. For example, having dementia can make it hard to look after a stoma.
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 happen often.
To help prevent leaks:
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:
As well as your stoma output, wind, or gas, passes 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 gas escape.
Some people notice that certain foods cause a lot of gas. Avoiding these can lower the amount of gas going through your bowel. You might need to experiment to find out what foods are a problem for you. Fizzy drinks and high-fibre foods often cause gas. Taking in lots of air through chewing gum or sucking sweets might also increase the amount of gas in your gut.
If gas 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 gas out.
Colostomy UK has more information on wind, ballooning and odour.
A hernia is a bulge under the skin 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 a hernia.
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. Or you might need to change to a bag with a better filter.
There might be times when you have a higher output from your ileostomy. For example, if you have a tummy bug or are taking certain medicines. It is important to pay attention to your ileostomy output so you can recognise if things change.
Eating foods that thicken your ileostomy 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, so are not suitable for people who do not eat pork or beef products.
If your ileostomy output has increased, it’s important to have fluids which are easily absorbed and stop you from losing salt. Sports drinks or rehydration drinks such as Dioralyte are better than water, tea and coffee. You can buy rehydration drinks from a pharmacy or supermarket. Or you can make your own by adding six teaspoons of sugar, one teaspoon of salt and half a teaspoon of sodium bicarbonate or sodium citrate to one litre of water. This is called St Mark’s solution. You can add flavouring if you want, such as a small amount of sugar-free squash. Try and sip fluids slowly throughout the day. Eating salty foods will also help replace the salt you lose through your ileostomy.
If your ileostomy output stays high, you might get dehydrated. Signs of dehydration include:
Contact your stoma nurse if you get any symptoms of dehydration. Contact your hospital urgently if your output is more than 2 litres a day for 3 days or more.
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.
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.
You might get constipated sometimes. 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 or 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.
If you have a stoma, you are not automatically classed as disabled under UK law. But you may be classed as disabled if:
You can find out more about Crohn’s and Colitis being considered disability in our guide for employees.
Some people living with a long-term health condition or disability are eligible for benefits. Our information on benefits and finances can help you find out about support you could get.
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You can also write to us at Crohn’s & Colitis UK, 1 Bishop Square, Hatfield, AL10 9NE. Or you can contact us through our Helpline by calling 0300 222 5700.
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To further support everyone affected by Crohn's or Colitis, we run a specific virtual social event aimed at people living with a stoma as a result of Crohn's or Colitis, or who are maybe getting one.
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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.
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