Ileostomy (stoma care)

About stomas

A stoma is an artificial opening of your bowel on the front your abdomen, created during an operation, to collect either faeces or urine.

Stomas that collect faeces are formed by bringing the end of your bowel through your abdominal wall. This can either be your large bowel (a colostomy) or your small bowel (an ileostomy).

Stomas that collect urine are also created from your bowel but from an isolated section. Your surgeon will connect your ureters to the stoma so urine from your kidneys passes through the stoma, effectively replacing your bladder – this is called a urostomy or ileal conduit.

If you have a stoma, waste products will pass through the stoma (which just means opening) and are collected in a reservoir bag, which you place over the stoma on the outside of your body.

A stoma can be either temporary (and reversed later) or permanent, depending on what type of operation you have had and which part of your bowel or urinary tract has been removed. The location of your stoma will also depend on the type of operation you have but it’s usually put in the lower part of your abdomen to one side.

A stoma will always be moist and may bleed if you touch it. It may protrude a few centimetres from the surface of your abdomen.

Types of stoma

The main types of stoma are:

  • ileostomy – an opening from your small bowel, to allow faeces to leave your body without passing through your large bowel
  • colostomy – an opening from your large bowel, to allow faeces to leave your body without passing through your anus
  • urostomy – an opening from your ureters, to allow urine to leave your body without passing through your bladder

What are the alternatives?

It may be possible for your surgeon to create an internal pouch for bowel waste, which he or she will attach internally to your anus. Your surgeon can create this out of your remaining bowel and it will mean you don't have to wear a bag. This is known as pouch surgery. There are several different types, such as 'J' pouch, 'S' and 'W' pouch. They are complex operations and may not be suitable for everyone. Ask your surgeon if it’s an option for you.

Rather than have a urostomy, it might be possible to reconstruct your bladder. However, this type of surgery isn't suitable for everyone – ask your surgeon for more information.

Managing your stoma

There are several different types of appliance available to fit over your stoma. They are all designed to fit discretely under your clothing, be easy to change, and not to leak or smell.

You will need to empty your bag to remove the waste – a stoma nurse (a nurse who specialises in caring for patients with a stoma) will show you how to do this. The way you empty it will depend on the exact type of stoma you have.

It's a good idea to get into a routine for changing the bag. If you have an ileostomy or colostomy, you may find that at certain times of the day the bag is more active than at others, such as shortly after a meal. Rather than change it then, choose a time when it's relatively inactive, such as first thing in the morning. You won't be able to control when you have bowel movements but you will usually need to change the bag twice per day (but this can depend on the type of bag you use).

As an alternative to wearing a bag, certain types of stoma can be emptied with lukewarm tap water at a time to suit you. This is called irrigation and 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 can expect to return to your normal daily activities after you have fully recovered from your stoma operation. You should be able to return to the same job. However, if your work is strenuous and involves heavy lifting or puts a strain on your abdominal muscles, seek advice from your doctor or stoma nurse about wearing appropriate support. You can return to doing sports – even swimming, as there are special smaller bags you can wear and waterproof shields to protect the stoma.

Many people become much more active once they have a stoma, as their symptoms are relieved.

Occasionally, some of your bowel may stick out of the stoma (prolapse), or become narrowed. This can block the passage of faeces into the bag. If this happens, see your stoma nurse or surgeon. Both of these problems can be corrected with surgery.

If you have a stoma of your bowel (a colostomy or ileostomy), you may notice that it sometimes moves, or 'wiggles' on its own. This is normal, and happens because your stoma is attached to your bowel, which squeezes and relaxes to allow digested food to move through.

Diet

In the first few months after your operation, your body will need to adapt to your shortened bowel and stoma. Your stoma nurse will give you information on what's best to eat as you recover.

After you have recovered fully and the stoma is functioning normally, you should be able to eat a normal healthy diet.

If you have had a colostomy, your nurse or surgeon may advise you not to eat foods that may give you wind, such as beans, cauliflower and cabbage or fizzy drinks.

Having a daily portion of cranberry juice, yogurt or buttermilk may help reduce any odour. Your doctor may prescribe you charcoal filters if odour is a problem.

It's important to drink enough fluids and eat foods that are rich in fibre to make sure you don't become constipated. 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 so it’s important to drink enough fluids or you may get dehydrated.

Skin care

Your stoma therapist or nurse will show you how to care for your stoma and the skin around it. A number of different protective pastes, membranes and powders 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.

Travelling

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. If you're planning a long journey, it's best to irrigate your bag just before you leave, and again when you arrive. If you're travelling to a country where the tap water isn't drinkable, use bottled water for your irrigation.

Help and support

Having a stoma can have a big impact on your body image. Specialist nurses and stoma therapists can help you at each step of the process. They may assist you with the practical aspects for example, such as helping you to choose the most suitable appliance system, empty the bag and look after the skin around your stoma. Just as importantly, your stoma nurse will support you through the emotional aspects of having a stoma.

There are also patient support groups, which can give you advice and support.

What is the best way to dispose of a used colostomy bag?

Answer

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. Some local authorities provide a home collection service for clinical waste – check with your local council for more details.

Explanation

After your stoma is fitted, your stoma care nurse will help you choose, and then practise, a method of disposing of your stoma bag. If you have a sealed bag, follow the steps below.

  • Check you have everything you need including water, soft wipes, a new bag and a plastic disposal bag.
  • Empty the stoma bag into the toilet, rinse it using a jug of water or the toilet flush, and wrap it in the plastic bag.
  • Seal the plastic bag and put it in either a clinical waste bin or your dustbin.
  • You normally shouldn't put your bag down the toilet. However, some bags have liners that you can flush down the toilet.

Wash your hands thoroughly before and after disposing of your stoma bag.

There are several different types of stoma bag available. Talk to your stoma care nurse about which one will suit you best. The different types of stoma appliance systems include:

  • drainable bags – you can empty these between changing the bag
  • closed bags – you can't empty these between changing the bag
  • 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 are an option for you)

Many people with stomas find that disposing of their stoma bags is the most difficult part of their stoma care routine. If you find this difficult, then remember you're not alone, and your stoma nurse can give you help and support.

How can I help my child cope with their stoma?

Answer

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.

Explanation

The amount of practical support you need to give your child will vary depending on their age. Babies and young children will need full support, but when your child is older, encourage him or her to take more responsibility for looking after their stoma.

The type of stoma bag that is best for your child will depend on how old he or she is. One-piece flexible or mini-stoma bags are best for babies and young children because of their size and shape. It's also useful to dress your child in an all-in-one outfit to stop him or her fiddling with the stoma bags.

As your child takes more responsibility for looking after their stoma, and when he or she starts school, the most suitable type of stoma bag may change. Speak to your child's stoma care nurse for information.

It's very important to encourage a positive attitude to the stoma from a young age. Cuddling not only helps you bond with your baby, but helps you begin to understand and accept the stoma. As your child gets older and their self-awareness grows, it's important to help him or her fit stoma management with school and social life.

There are a number of support groups, books and activity camps specially designed for children with stomas. Ask your stoma nurse for information on helping your child to care for their stoma.

What products can I put on the skin around the stoma to look after it?

Answer

There are a number of different products you can use on the skin around your stoma to protect it, including barrier creams, wafers and gels.

Explanation

It's very important to protect the skin around your stoma and to repair any damage that may occur from the adhesives that you will use to attach the stoma bags.

To protect your skin, you will need to create a barrier between it and the adhesive you will use to attach your bag. This will also help to protect your skin if the stoma bag leaks. If your skin is damaged, it's important to help it heal. There are various products available to do this, including a skin wafer (sometimes called a peristomal skin wafer).

Skin wafers are a protective layer, often made from fabric. They come in a range of shapes and sizes, and can sometimes be cut to fit your stoma. They can be used to both protect and heal the skin around the stoma, which can be very delicate.

Protective powders are often made from similar ingredients to wafers and rings, and can also be used on broken skin.

Barrier creams, such as zinc cream or a branded cream (eg Vasogen), form a film over the skin to help protect it. However, they aren't recommended if you have broken skin as they don't help your skin heal. If you use a barrier cream, massage it into your skin and wipe away any excess before you attach your stoma bag.

Only use skin gels and lotions on unbroken skin, unless they are alcohol-free. Make sure you allow the gel or lotion to dry before you fit your stoma bag.

Your stoma nurse can give you more information on protecting the skin around your stoma.

Can I have a baby if I have a stoma?

Answer

Yes, you should still be able to have a baby if you have a stoma but it’s important to talk to your GP before you get pregnant.

Explanation

Your GP may suggest that you visit a gynaecologist (a doctor who specialises in women’s reproductive health) before you get pregnant. Although most women with a stoma don’t have any particular problems, there are some potential difficulties.

Your stoma should work normally during your pregnancy but you may need to drink more fluids. Occasionally, some women get an obstruction in their bowel as they get bigger because as your womb increases in size with your developing baby, it can hold up the passage of contents through your bowel. If this happens, your stoma can stop working and your abdomen (tummy) may become swollen and painful. If this happens, stick to a fluid-only diet and get plenty of rest. This should go away but it’s possible that you may need to go into hospital.

It shouldn’t be difficult to change your bags during pregnancy but in your later stages, when your abdomen gets bigger, it might be difficult to see the stoma. If this happens, use a mirror.

Sometimes your stoma can get bigger as your skin and muscle stretches with your growing baby, and some of your bowel may stick out into the bag. If this happens, see your doctor.

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, your doctor may advise you to have a caesarean section to prevent anal incontinence. If your rectum (back passage) was removed in a previous operation and there is scar tissue in your perineum (the area between your vagina and the original site of your anus), your doctor may need to make a small cut to enlarge the entrance to your vagina to make your birth easier. Ask your doctor to explain how your stoma will affect how you give birth.

If you have any concerns about pregnancy and a stoma, talk to your doctor, stoma nurse or midwife.

Can I have a stoma reversed?

Answer

If you have a permanent stoma, it cannot be reversed. If you have a temporary stoma, you may be able to have it reversed.

Explanation

Sometimes a temporary stoma is created to rest your bowel, for example if you have bowel cancer, inflammatory bowel disease, diverticulitis or an injury to your bowel. A temporary stoma can give your bowel time to heal.

If your stoma can be reversed, you will have the operation when your bowel has fully recovered from the effects of your initial surgery. The outcome of a stoma reversal operation will depend on exactly what type of operation you had to create your stoma. It will also depend on how much of your bowel was removed and which part. If very little of your rectum remains for example, then it’s likely that you will find it difficult to control your bowel movements.

After having an operation to reverse your stoma, it will take time for your bowel function to settle and to get into a pattern – 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, which may include:

  • loose motions or constipation
  • needing to go to the toilet to pass faeces more frequently 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.