Why do some people need a stoma?
You may need to have an ileostomy or colostomy if you have bowel cancer or inflammatory bowel disease. Sometimes a temporary stoma is created to allow an internal join in your bowel to heal after surgery. You may need to have a urostomy if you have surgery for bladder cancer, severe urinary incontinence or damage to your pelvis.
Types of stoma
The type of stoma you have will depend on your surgery and which part of your bowel or urinary tract has been removed. Your surgical team will plan the location of your stoma carefully to make sure you can look after it easily.
If your surgery is planned in advance, a stoma care nurse will usually see you beforehand. They’ll show you some stoma bags and how to change them. They’ll also decide with you where the best location for your stoma is. This will take into account factors such as your natural skin folds and where you wear your belt, if you use one.
A stoma is usually put in the lower part of your abdomen (tummy) to one side. A healthy stoma will be red and moist and may bleed if you touch it. It will protrude above the surface of your skin.
There are several different types of stomas. Stomas that collect faeces are formed by bringing the end of your bowel through your abdominal wall. Stomas that collect urine are created by attaching your ureters (the tubes that carry urine away from your kidneys) to a part of your bowel. This part of your bowel is then bought out to your abdomen.
The main types of stoma are listed below.
- Ileostomy – an opening from your small bowel, to allow faeces to leave your body without passing into your large bowel. Bowel movements after an ileostomy are usually quite fluid.
- Colostomy – an opening from your large bowel, to allow faeces to leave your body without passing through your anus. Bowel movements after a colostomy are usually quite solid.
- Urostomy – an opening from your ureters, to allow urine to leave your body without passing through your bladder.
What are the alternatives?
Your surgeon may be able to create a pouch for bowel waste inside your body instead of forming a stoma. The pouch is made from your remaining bowel and then attached internally to your anus (the end of your large intestine). This will mean you don’t have to wear a bag. It’s known as pouch surgery. There are several different types, such as ‘J’ pouch, ‘S’ pouch and ‘W’ pouch. These complex operations aren't suitable for everyone. Ask your surgeon if this is an option for you.
Your surgeon may be able to reconstruct your bladder instead of performing a urostomy. This type of surgery isn't suitable for everyone though – ask your surgeon for more information.
Managing your stoma
There are several different types of bags available to fit over your stoma. These are all designed to fit discretely under your clothing, be easy to change and not to leak or smell. Your stoma care nurse can help you choose one to suit your needs. For example, certain stoma bags will be more suitable if you're very active, have poor eyesight or have any allergies.
You’ll need to empty your stoma bag to remove the waste – a stoma care nurse will show you how to do this. The way you empty the bag will depend on the exact type of stoma bag you have. The different types of bags are listed below.
- Drainable bags – you can empty these through an opening at the bottom of the bag so you don’t need to change the bag so regularly.
- Closed bags – you can’t empty these, but you change them when they're full.
- Reusable bags – you can empty and reuse these.
- Disposable bags – you can flush this type down the toilet. They aren’t suitable for everyone, so ask your stoma care nurse if they're an option for you.
When emptying your stoma bag, you can pour the faeces and urine down the toilet. The best way to dispose of a stoma bag is to rinse it after emptying and wrap it in a plastic bag. You can then put the stoma bag in either a clinical waste bin or a normal dustbin. This will depend on your local authority’s disposing of clinical waste products, such as stoma bags. Some local authorities provide a home collection service for clinical waste – check with your local council for more details.
It’s a good idea to get into a routine for changing your bag. If you have an ileostomy or colostomy, you may find that your bag fills up at certain times of the day. For example, this might be shortly after a meal. Rather than change it then, choose a time when it’s relatively inactive, such as before a meal.
Instead of wearing a bag, you can empty certain types of stoma with lukewarm tap water at a time to suit you. This is called irrigation. The aim is to only have bowel movements when the bowel is irrigated, not between flushings. Rather than wear a bag, you wear a colostomy ‘plug’ or ‘bung’ over the stoma instead.
Living with your stoma
You should be able to return to your normal daily activities after you've fully recovered from your stoma operation. You may need to wear appropriate support if your work is strenuous and involves heavy lifting or puts a strain on your abdominal muscles. If you have a stoma, you should be able to wear normal clothes, although high-waisted underwear and trousers may be more comfortable.
Having a stoma can make you feel a bit down, especially if you find it difficult to change your stoma bags at first. It can also have a big impact on your body image. Your stoma care nurse will support you through the emotional aspects of having a stoma. You may find it useful to talk to other people with stomas and who are in a similar situation. Your nurse may be able to put you in touch with a support group in your local area.
In the first few months after your operation, your body will need to adapt to your shortened bowel and your stoma. Your stoma care nurse will give you information on the best foods to eat as you recover. After you have recovered fully and your stoma is functioning normally, you should be able to eat a normal healthy diet.
You may find that some foods give you wind or make your faeces smell bad. These include beans, cauliflower, cabbage, beer, fish, eggs and fizzy drinks. Having a daily portion of cranberry juice, yoghurt or buttermilk may help to reduce any odour. Your doctor may prescribe charcoal filters or pouch deodorisers if you find that odour is a problem.
It’s important to drink enough fluids and eat high-fibre foods to make sure you don’t become constipated. High-fibre foods include porridge oats, root vegetables and bananas. Some foods, such as beetroot, spicy foods, alcohol and fruit juice, may give you diarrhoea. Over time, you’ll learn which foods you can and can’t eat, while you work with your dietitian or stoma care nurse.
Your large bowel normally absorbs water. If you have an ileostomy and your large bowel has been removed, the faeces coming through the stoma will be watery. It’s important to drink enough fluids or you may get dehydrated. Some foods, such as white rice and stewed apple, can make your faeces thicker if you’re losing too much fluid. If you have an ileostomy, you may need to avoid foods that can cause a blockage, such as mushrooms, nuts and dried fruits.
Your skin may become irritated around your stoma, so you need to look after it carefully. A number of different cleansing products, protective creams and lotions are available. Your stoma therapist or nurse will show you how to use these and what to do if your skin becomes damaged or sore.
Sometimes the adhesives you use to attach a stoma bag to your body can damage your skin. You can use a number of different products to protect your skin, including barrier creams, wafers and gels. Creating a barrier between your skin and the adhesive will also protect your skin if your stoma bag leaks.
To protect your skin, you can use a flexible protective skin wafer. Skin wafers come in a range of shapes and sizes and can sometimes be cut to fit your stoma. You can use a barrier paste under the wafer for extra protection, even if your skin is damaged. You can also apply a barrier cream, such as zinc oxide. If you use a barrier cream, massage it into your skin and wipe away any excess before you attach your stoma bag.
Don’t use strong or perfumed soaps, as they may irritate your skin, or use anything that stops the skin wafer sticking properly. Only use skin gels and lotions if they are alcohol-free.
If you have an ileostomy, your GP or nurse may advise you to avoid taking certain types of medicines. These include slow-release tablets and capsules and enteric-coated medicines, which have a special coating that makes them resistant to stomach acid. The products may not release enough of the active ingredient in your stomach or bowel. It’s important to tell your pharmacist about your stoma before you buy any over the counter medicines.
Sport and physical activity
There’s no reason why you can’t carry on with most sports and activities after your stoma operation. Walking is a good form of gentle activity to start off with. Check with your stoma care nurse before you do anything more strenuous. You should be able to return to doing a wide range of sports, although you may need to avoid rough contact sports and heavy lifting. You can even go swimming, as there are special smaller bags you can wear and waterproof shields to protect your stoma.
If you’re flying, you may find that the change in aircraft cabin pressure gives you wind. This effect will be worse if you drink fizzy drinks or beer on the flight. It’s best to carry spare bags in your hand luggage when you travel. You may need to carry a special certificate for carrying these. Like you would with medicines, always carry extra stoma supplies with you – more than you think you’ll need. It’s also a good idea to think about what you’d do if you’re separated from your hand luggage.
FAQ: Can I have a baby if I have a stoma?
You should still be able to have a baby if you have a stoma. It’s important to talk to your surgeon before you get pregnant.
Pregnancy and child birth are considered to be safe in women who have a stoma. You should be able to change your stoma bags as normal during pregnancy. If you find it difficult to see your stoma as your baby grows, try using a mirror to help you change your bag.
Sometimes your stoma can get bigger during pregnancy. As your skin and muscles stretch with your growing baby, some of your bowel may stick out into your stoma bag. If this happens, ask your stoma care nurse for advice.
Most women with a stoma are able to have a vaginal delivery but there are a few factors that can affect how you give birth. If you have an internal pouch, for example, your doctor may recommend that you have a caesarean section to prevent anal incontinence.
If you have any concerns about pregnancy and a stoma, talk to your doctor, stoma care nurse or midwife.
FAQ: Can I have a stoma reversed?
If you have a permanent stoma, it can’t be reversed. If you have a temporary stoma, you may be able to have it reversed.
You may have a temporary stoma fitted if your bowel needs time to heal or rest. This may be because you have bowel cancer, inflammatory bowel disease, diverticulitis or an injury to your bowel.
Your stoma won’t be reversed until your bowel has fully recovered from the effects of your initial surgery. How well a stoma reversal operation works will depend on how your stoma was created in the first place. It will also depend on how much of your bowel was removed and which part. After having your stoma reversed, it will take time for your bowel to settle down. The time it will take will be specific to you but it can often be at least a few weeks. You may have some problems during this time. These may include:
- loose motions or constipation
- needing to go to the toilet to pass faeces more often and more urgently
- difficulty telling the difference between passing wind and having a bowel movement
- sore skin around your rectum
Ask your doctor if stoma reversal is an option for you and what you can expect after the operation.
FAQ: How can I help my child cope with their stoma?
It’s important to maintain a positive attitude about your child’s stoma. Your child will need a lot of support at first. As time goes by, it’s worth encouraging him or her to take on more responsibility for looking after their stoma.
Most stomas in children are temporary, which means they can be reversed. How much practical support you need to give your child will vary depending on their age. Babies and young children will need full support. Your child may be able to take more responsibility for looking after their stoma as they get older. The type of stoma bag that’s best for your child will depend on their age and may change as they get older. Ask your child’s stoma care nurse for advice.
Having a stoma fitted can affect your child’s lifestyle, whatever their age. Your child’s stoma care nurse can give them reassurance and support and help them fit their stoma management around their school and social lives. Your child needs to learn to look after their stoma, because the skin can easily become irritated and infected, especially in children.
It’s important to encourage a positive attitude to the stoma from a young age. As your child gets older, they will become more aware of their stoma. Having a stoma can make your child or teenager feel self-conscious and embarrassed.
There are a number of support groups, books and activity camps specially designed for children with stomas. Ask your stoma care nurse for information on helping your child to care for their stoma.
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