Ileostomy

Page last reviewed: 13/07/2011

An ileostomy is a surgical procedure that is used to treat serious digestive complaints. It is also used to treat some types of cancer, where it is necessary to remove some or all the colon (large intestine) and, in some cases, the rectum and anus (where waste products are stored and passed out of the body).

If the colon is removed, another way of removing waste products from the body is needed. An ileostomy is a way of achieving this.

In order to understand why an ileostomy is required and how it works, it is useful to learn a little more about the digestive system.

The digestive system

The food that we eat passes down the oesophagus (gullet) and into the stomach where it is digested. The digested food passes into the small intestine where nutrients are absorbed. It then moves into the colon where more nutrients are absorbed.

Any waste products, or undigested food, are excreted (expelled) from the colon, as stools (faeces) through the rectum and anus.

In an ileostomy, the ileum, which is the end of the small intestine, is diverted from the colon and re-routed. The ileum can be re-routed through a hole that is made in the abdomen, which is known as a stoma. An external pouch (stoma pouch) is attached to the opening to collect waste products.

Alternatively, an artificial pouch can be created inside the body which can be periodically emptied, as and when required.

Uses

Conditions that are often treated using an ileostomy include:

For more information, see Ileostomy - why it is used.

Types of ileostomy

There are four main types of ileostomy:

  • loop ileostomy
  • end ileostomy
  • ileo-anal pouch
  • continent ileostomy

These are described in more detail below.

Loop ileostomy

During a loop ileostomy, a loop of the small intestine is brought out through the stoma, but the colon and rectum are not removed. The procedure is usually only used as a temporary measure, when it is necessary to remove part of the colon. Once the remaining colon has healed, it can be reconnected to the small intestine, and the stoma can then be closed.

Loop ileostomies are often used to treat bowel cancer.

End ileostomy

During an end ileostomy, the colon and rectum are removed and the end of the ileum is brought out through the stoma and attached to an external pouch. An end ileostomy is usually permanent.

Ileo-anal pouch

An ileo-anal pouch (also known as a J pouch) is an internal pouch that is surgically constructed from the small intestine. Ileo-anal pouches are used in cases where the colon and rectum need to be removed. The pouch is connected to the sphincter muscle, which is the muscle that surrounds the anus.

Ileo-anal pouches are becoming an increasingly popular option because people who have them do not need to wear an external pouch. However, they are not a suitable option for everyone, and have some disadvantages, such as having to frequently empty the pouch.

Continent Ileostomy

A continent ileostomy is similar to an end ileostomy, but rather than having to wear an external pouch, an internal pouch is created inside the abdomen. A valve is implanted into the skin so that the pouch can be emptied using a catheter (thin tube).

Continent ileostomies are not used as much as they were in the past because most people prefer to have an ileo-anal pouch. However, they maybe a useful treatment option for people who cannot have an ileo-anal pouch due to health, or technical, reasons, or in cases where an ileo-anal pouch malfunctions and needs to be removed.

How common are ileostomies?

An ileostomy is a relatively common type of digestive surgery.

Ileostomies that are used to treat digestive conditions, such as Crohn's disease, or ulcerative colitis, tend to be carried out in younger people who are 15-30 years of age. Ileostomies that are used to treat bowel cancer tend to be carried out in older people who are 60-70 years of age.

Outlook

Adjusting to life with an ileostomy can be challenging, and many people will experience both physical and psychological problems in the short to medium term after the operation.

Problems can include:

  • skin irritation around the stoma,
  • leakage from the stoma or pouch
  • feelings of anxiety and self-consciousness

Many people adjust well to life with an ileostomy and often report that their quality of life improves following surgery. This can be particularly true in cases where a person has been living with a painful digestive condition, such as Crohn's disease, for many years.

 

Stomach


The sac-like organ of the digestive system. It helps digest food by churning it and mixing it with acids to break it down into smaller pieces.

Stools


Stool (also known as faeces) is the solid waste matter that is passed from the body as a bowel movement.

Anus


The anus is the opening at the end of the digestive system where solid waste leaves the body.

Abdomen

The abdomen is the part of the body between the chest and the hips.

 

Page last reviewed: 13/07/2011

An ileostomy is used when the colon becomes extensively damaged, inflamed, or loses function.

Common uses

The most common uses of an ileostomy are described below.

Crohn's disease

Crohn's disease is a condition where for reasons that are uncertain, the immune system causes inflammation (swelling) of the small intestine and colon (large intestine), causing a range of symptoms such as:

  • diarrhoea
  • abdominal pain
  • fatigue

An ileostomy is usually recommended if the symptoms of Crohn's disease cannot be controlled using medication, or if a serious complication occurs, such as a blockage in the intestine.

The preferred surgical option for treating Crohn's disease is a permanent end ileostomy. A continent ileostomy, or ileo-anal pouch, is not usually recommended because there is a risk that these types of internal pouches may be affected by Crohn's disease and will need to be removed at a future date.

However, if you and are willing to accept the risk that an internal pouch may need to be removed after several years, a continent ileostomy or ileo-anal pouch may provide a medium-term solution.

Ulcerative colitis

Ulcerative colitis is similar to Crohn's disease in that it is a poorly understood condition that causes inflammation (swelling) of the colon,  leading to symptoms such as:

  • abdominal pain
  • bloody diarrhoea with mucus

In most cases, the symptoms of ulcerative colitis can be controlled with medication. However, in a small number of cases, all types of treatment prove to be ineffective. In such circumstances, permanently removing the colon is recommended. An ileo-anal pouch or, less commonly, an end ileostomy can then usually be created.

Bowel cancer

Bowel cancer is a general term that describes cancer that develops inside the colon or rectum (where waste material is stored and passed from the body).  The use of chemotherapy, radiotherapy (or both) is recommended for bowel cancer in order to shrink the cancer. It is then usually necessary to remove the section of the bowel or rectum that contains the cancerous cells.

If only a small section of the colon is removed, a temporary loop ileostomy is carried out, which is attached to an external pouch. Once the colon has recovered from the affects of the surgery, the remainder of the colon can be reattached and the loop ileostomy can be removed.

If most of the colon is removed, it may be necessary to perform a permanent end ileostomy. If the middle part of the rectum needs to be removed, it is usually necessary to create an ileo-anal pouch. If the upper part of the rectum is removed, the remainder of the rectum can be connected to the colon.

In cases where the lower part of the rectum is removed, an alternative procedure, called a colostomy will need to be carried out. See Colostomy - introduction for more information.

Less common uses

Less common uses of an ileostomy are described below.

Familial Adenomatous Polyposis

Familial Adenomatous Polyposis (FAP) is a rare condition that affects one in every 10,000 people, and triggers the growth of non-cancerous lumps of tissue inside the colon.

Even though the lumps are non-cancerous, there is a very high risk that, over time, at least one will turn cancerous. More than 99% of people with FAP will have bowel cancer by the time they are 50 years of age.

Due to the high risk of developing cancerous lumps, as a precaution it is usually recommended that a person who is diagnosed with FAP has their colon  removed. It is usually replaced with an ileo-anal pouch or, less commonly, an end ileostomy.

Bowel obstruction

A bowel obstruction occurs when part of the digestive system becomes blocked by food, fluids, or waste products. This can occur if part of the digestive system is scarred, or inflamed, or if the digestive system is unusually narrow.

If the colon becomes completely blocked, it is usually necessary to remove the colon and perform an ileostomy. This can either be temporary or permanent depending on the underlying cause of the obstruction.

Injury

A significant injury to the colon, such as a puncture, or an impact injury, can result in the colon becoming permanently damaged. In this case, it may be necessary to remove the colon and carry out an ileostomy. Whether this is a temporary or permanent ileostomy will depend on the type and extent of the injury.

Glossary

Diarrhoea
Diarrhoea is the passing of frequent watery stools when you go to the toilet.
Pain
Pain is an unpleasant physical or emotional feeling that your body produces as a warning sign that it has been damaged.
Blood
Blood supplies oxygen to the body and removes carbon dioxide. It is pumped around the body by the heart.
Familial
Familial is when a non-inherited disease or condition tends to affect more members of the same family than other families in the general population.
Inflammation
Inflammation is the body's response to infection, irritation or injury, which causes redness, swelling, pain and sometimes a feeling of heat in the affected area.

Page last reviewed: 13/07/2011

End Ileostomy

An end ileostomy involves removing the whole of the colon. The ileum (the end of the small intestine) is brought out of the abdomen to create a permanent stoma (opening). The end is then stitched into place. 

The waste material comes out into a pouch, called a stoma pouch that is worn under your clothes and is made of an adhesive material that sticks to your skin. The pouch needs to be emptied regularly. It is recommended that it is emptied when it is one-third full because to prevent it from bulging and possibly leaking.

Loop Ileostomy

A loop ileostomy is a procedure that involves creating a stoma at the loop of the ileum, usually on the right-hand side of the abdomen.

The loop is created to direct the waste material from your colon. This may be necessary to assist with the healing of an injury to your colon, or following the removal of a diseased section (or the entire colon) or to relieve a blockage.

The loop ileostomy usually temporary and the stoma may be closed during a second operation.

Ileo-anal pouch

Creating an ileo-anal pouch involves removing the colon and the rectum, but not the anus. An ileo-anal pouch is created from the ileum (the end of the small intestine).

The pouch is joined to the anus so that your bowel actions can be controlled in the normal way. The pouch stores the waste material until it is excreted (expelled) when you go the toilet.

The operation is usually carried out in two stages. First, your colon and rectum are removed, and then the pouch is created and joined to your anus. It is usually necessary to let the area around the pouch heal before it is used, so a temporary loop ileostomy above the pouch will be created.

After a couple of months, a second, smaller operation is carried out to close the ileostomy. Sometimes, it is possible for the operation to be performed without creating a temporary ileostomy.

Continent ileostomy

A continent ileostomy involves removing the colon (large intestine). The end of the ileum is bent back inwards, to create a pouch that is stapled into place against the side of the abdomen.

A smaller section of the ileum is used to create a valve, which is pulled through a stoma in the abdomen and then stitched into placed. The internal pouch can then be emptied by draining it with a catheter (thin tube). 

Glossary

Anus
The anus is the opening at the end of the digestive system where solid waste leaves the body.

Page last reviewed: 13/07/2011

End or loop ileostomy

Following an ileostomy, the speed of recovery will depend on the nature and severity of the condition, the complexity of the surgery, and the age and overall health of the person having the surgery. The average stay in hospital is around 10-12 days after the operation. The abdominal wall will initially be very sore, but this will soon settle down.

Normal activities are usually possible 4-8 weeks after an ileostomy and an ileo-anal pouch .Keeping active can help to reduce your risk of developing complications, but strenuous activity should be avoided for about three months. Your surgeon will be able to give you further advice about this.

Living with an ileostomy

After you have had an ileostomy, you will be referred to a stoma nurse. A stoma nurse specialises in helping people with a stoma. They will be able to inform you about the equipment that you will need, and advise you about the best way to manage and care for your stoma.

If you have had an ileostomy, you will be entitled to a free NHS prescription for the care products that you will need. At first, living with an ileostomy can be a distressing experience. It may take several months, or even a year, before you get used to it.

However, with practice and the support of your stoma nurse and your family, using the pouch will become routine, and you will be able to live a normal life. Many people with a stoma say that their quality of life has improved since having an ileostomy because they no longer have to cope with the symptoms of the condition that made the ileostomy necessary.

Stoma pouch

Choosing the right stoma pouch for you is important. The pouching system should be fitted in order to make it feel as comfortable as possible. Your stoma nurse will be able to provide you with advice about this.

Pouches are made from odour resistant materials and they can be easily drained through an opening in the bottom. If fitted properly, it is impossible to see a stoma pouch under everyday clothes.

It is recommended that you empty your pouch when it is one-third full because this will prevent the pouch from bulging underneath your clothes. Stoma pouches usually have to be replaced every 3-7 days.

Stoma care

The output of your stoma (which is a continual flow of a pasty liquid) can cause irritation to the skin surrounding the opening, so it is important to keep the skin clean. You should regularly clean the area using mild soap and water.

You may notice small spots of blood around the stoma when you clean it - this is perfectly normal. It is caused by the delicate blood vessels in the tissues of the stoma which can bleed easily. However, the bleeding will soon stop.

Burning, or itching skin, is a sign that you need to change your pouching system. Occasionally, larger areas of the skin can become inflamed. If this occurs, you should contact your GP, or stoma nurse, who will be able to prescribe a powder, or spray, to treat the inflammation.

Ileo-anal pouch

If you have had an ileo-anal pouch created through surgery, you may find that you need to empty it (by going to the toilet) up to 20 times a day during the first few days after the operation. However, the number of times that you need to go to the toilet will slowly reduce as the pouch expands and you get used to controlling the muscles that surround it.

Most people find that their 'pouch activity' settles down after six months to a year. However, the number of bowel movements will differ from person to person. For example, some people will only need to empty their pouch twice a day, whereas others may have to empty it 6-8 times a day.

Leakage

Almost half of all people who experience leakage from their pouch do so during the first few weeks after the operation. This problem is usually resolved as they get used to having the pouch, and as their muscle control improves.

Pelvic floor exercises, as outlined below, are a good way of improving your muscle control.

  • Sit, or lie, comfortably with your knees slightly apart.
  • Squeeze, or lift, at the front as if you were trying to stop the passage of urine, and then at the back as if you were trying to stop the passage of wind.
  • Hold this contraction for as long as you can (at least two seconds, increasing up to 10 seconds as you improve).
  • Relax for the same amount of time before repeating.

Ideally, you should aim for 10 short, fast, and strong contractions.

Continent ileostomy

For the first 3-4 weeks after surgery, the catheter (thin tube) will be left permanently connected to your pouch and will be connected to a drainage bag that will be strapped to your leg. This is to allow the pouch to heal.

Most people are well enough to leave hospital 7-10 days after surgery. While you are in hospital, you will be taught how to use the catheter to drain your pouch, what to do if the pouch falls out, and how to regularly irrigate (wash out) the catheter using tap water.

By the third or fourth week after surgery, your pouch should have healed enough to remove the permanent catheter, and you can then drain the pouch at regular intervals into a basin or other container.

For the first few weeks, you may need to drain the pouch every 2-3 hours, before attaching the catheter to a drainage bag when you sleep in order to prevent any leakage.

Over time, the amount of times that you will need to drain the pouch should reduce. By the sixth week after surgery, most people need to drain their pouch 4-6 times during the day, and once before sleeping. By this time, you will probably not need to wear a drainage bag when you are sleeping.

As with an end, or loop, ileostomy, it is important to keep the skin around the catheter clean in order to prevent irritation or infection. Therefore, you should regularly clean the skin using water and a mild soap.

 

Glossary

Pain
Pain is an unpleasant physical or emotional feeling that your body produces as a warning sign that it has been damaged.

Page last reviewed: 13/07/2011

Diet

During the first few months after having an ileostomy, it is recommended that you eat a low-fibre diet. This is because the surgery causes your bowels to swell, making digesting fibre difficult.

Once the swelling has subsided (usually after eight weeks) you will be ready to resume a normal diet. However, you may need to take vitamin supplements until you are ready to resume a normal diet.

It is a good idea to introduce new food to your diet slowly, at the rate of one type of food each day. This will allow you to judge the effects of the food on your digestive system. You may find it useful to keep a 'food diary' so that you can keep a record of the food that you have eaten, and how you feel afterwards.

Dietary advice for people with an ileostomy is similar to that for people without one. You should eat healthy, balanced diet that includes plenty of fresh fruit and vegetables (at least five portions a day) and whole grains. Many people with an ileostomy find it best to avoid eating nuts because they can cause irritation.

Fluid replacement

If you no longer have a colon, you are at greater risk from dehydration. This is because one of the functions of the colon is reabsorb water and minerals (sodium and potassium) back into the body. Therefore, it is important to drink at least 1.2 litres (6-8 glasses) of water a day. However, you will need to drink more in hot weather, or if you are more active than normal.

Sachets of fluid replacement solutions are available over-the-counter (OTC) from pharmacies, and can be taken when you feel dehydrated.

Flatulence (gas)

In the first few weeks after surgery, you may experience a lot of gas. This is harmless, but it can be embarrassing and uncomfortable. However, the gas should subside as your bowels become less inflamed (swollen).

Not eating foods that cause gas can help. Foods that cause gas include beans, broccoli, brussel sprouts, cabbage, cauliflower, onions, and eggs. Fizzy drinks and beer will also cause gas. However, you should not skip meals to try to prevent gas because it will make the problem worse.

Some people find that eating six small meals a day, rather then three main meals, helps to reduce flatulence. If the problem persists, your GP, or stoma nurse, should be able to recommend a medicine that can help to reduce gas.

Smell

Many people worry that their external pouch will give off a smell that other people will notice. However, this is unlikely if you use an odour-resistant pouching system, and you empty the pouch regularly. Special liquids and tablets are also available that can be placed in your pouch to reduce any smell. Eating yoghurt and buttermilk can also help to reduce smell.

Medication

Many medicines are now designed to dissolve slowly in your digestive system. Therefore, if your colon is removed, and you are taking medication, it may not be as effective because rather than staying in your system, it could come straight out into your pouch.

You should let your pharmacist know about your stoma because they will be able to recommend an alternative type of medicine, such as an uncoated pill, powder, or liquid.

Anal soreness

Anal soreness, or itchiness, is quite common in people with an ileo-anal pouch. Having regular baths should help to relieve this.

Using a skin protection cream is also recommended. Your GP will be able to advise you about the best cream for you. You should use a small amount of cream every time you empty your pouch.

Page last reviewed: 13/07/2011

Post-operative complications

As with any surgery, complications can develop during, or soon after, having an ileostomy. Possible complications include:

  • excessive bleeding - which can be treated with blood transfusions
  • post-operative infections - which can be treated with antibiotics
  • accidental damage or perforation to nearby tissues or organs - which may require further surgery to repair

There is a risk that an ileostomy will cause serious complications, such as a heart attack, or stroke, which could potentially be fatal.

It is difficult to estimate the exact rate of death because estimates can vary depending on the type of ileostomy surgery being performed, and the general health of the person who is having the surgery. Generally, the risk is thought to be small, at less than 1 in 100.

Obstruction

Sometimes, the ileostomy does not function for short periods of time. This is not usually a problem. However, if your stoma is not active for more than six hours, and you experience cramps or nausea, you may have an obstruction. In this situation, you should contact your GP or stoma nurse.

A warm bath may help to relax your abdominal muscles. Do not take a laxative. Foods such as nuts, pineapple, coconut, and corn, are more likely to cause an obstruction.

Vitamin B12 anaemia

It is estimated that about a quarter of people who have had an ileostomy will experience a gradual drop in their levels of vitamin B12. Vitamin B12 is a vitamin that plays an important role in regulating the brain and nervous system.

The decrease in vitamin B12 is thought to occur following an ileostomy because the part of the intestine that is removed during the procedure is responsible for absorbing some vitamin B12 from the food that you eat.

In some people, the fall in vitamin B12 levels can trigger a condition called vitamin B12 anaemia, which is also sometimes known as pernicious anaemia.

Symptoms of vitamin B12 anaemia include:

  • unexplained fatigue (extreme tiredness) and lethargy (lack of energy)
  • breathlessness
  • faintness
  • irregular heart beats (palpitations)
  • headache
  • tinnitus - the perception of a noise, such as ringing, in one ear or both ears, or inside your head, which comes from inside your body
  • loss of appetite

If you are living with an ileostomy and you experience any of the symptoms listed above, you should contact you GP who will be able to arrange a blood test to check your vitamin B12 levels.

It is important not to ignore these type of symptoms because if vitamin B12 anaemia is left untreated it can cause more serious problems with your nervous system. For example:

  • vision problems
  • memory loss
  • paraesthesia (pins and needles) - a prickling, or tingling, sensation in your arms, legs, hands or feet
  • ataxia - the loss of physical co-ordination which can affect your whole body and cause difficulty speaking or walking

If a diagnosis of vitamin B12 is confirmed, treating the condition is relatively straightforward and involves taking regular vitamin B12 supplements in the form of injections or tablets.

See the Health A-Z topic about Vitamin B12 anaemia for more information.

Pouchitis

Pouchitis is when an internal pouch becomes inflamed and is a common complication in people with an ileo-anal, or continent, ileostomy. It is estimated that around 1 in 3 people with an internal pouch will experience at least once episode of pouchitis.

The symptoms of pouchitis are similar to digestive conditions such as Crohn's disease, or ulcerative colitis, and include:

  • diarrhoea, which is often bloody
  • abdominal pains
  • stomach cramps
  • dehydration
  • high temperature (fever) of or above 38C (100.4F)

Pouchitis can usually be successfully treated with a two-week course of antibiotics.

Stoma problems

Some people with an end, loop, or a continent, ileostomy, experience problems related to their stoma. These can include:

  • irritation and inflammation of the skin around the stoma - this can make it difficult to hold the pouch in position
  • narrowing of the stoma (stoma stricture) - which can make it difficult to fit the pouch into the stoma
  • widening of the stoma (stoma prolapse) - again, making it difficult to hold the pouch in place

If you experience any of these problems, you should contact your GP or stoma nurse for advice. Skin irritation can usually be treated with topical treatments, such as a spray, to reduce skin inflammation and irritation.

A stoma stricture or prolapse may require minor surgery to correct the stoma.

Valve malfunction

A common complication of a continent ileostomy is that the valve that is connected to the internal pouch can malfunction due to the valve narrowing, or being pulled out of position. In this circumstance, minor surgery is required to either repair or replace the valve.

Phantom rectum

Phantom rectum is a complication that can affect people with ileostomies. The condition is similar to a 'phantom limb', where people who have had a limb amputated feel that it is still there.

People with phantom rectum feel like they need to go to toilet even though they do not have a working colon.  This feeling can continue to occur many years after surgery. Some people have found that sitting on a toilet can help relieve the feeling.

Content provided by NHS Choices www.nhs.uk and adapted for Ireland by the Health A-Z.

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