Ileostomy

Posted in Disease Information

Introduction

An ileostomy is a surgical procedure to link the end of the small intestine to an opening in the abdomen (stoma) or to an internal pouch.

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

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

When is an ileostomy needed?

An ileostomy is needed when the colon (large intestine) is damaged, inflamed or loses function. It is also used to treat some types of cancer, where it is necessary to remove part or all of the colon.

Conditions often treated using an ileostomy are:

• Crohn’s disease: a condition that causes chronic (long-term) inflammation of the digestive system. An ileostomy is usually recommended if the symptoms can’t be controlled using medication, or if a serious complication occurs.
• Ulcerative colitis: a condition that causes inflammation and ulceration of the colon. Permanently removing the colon is usually recommended in a small number of cases when other treatments prove ineffective.
• Bowel cancer: after chemotherapy or radiotherapy to shrink the cancer, it is usually necessary to remove the section of the bowel or rectum that contains the cancerous cells.

Ileostomies used to treat digestive conditions tend to be carried out in people aged between 15 and 30 years old. Ileostomies used to treat bowel cancer tend to be carried out in older people aged between 60 and 70 years old.

Less often, an ileostomy may be used to treat:

• A bowel obstruction. It may be necessary to perform a temporary or permanent ileostomy depending on the underlying cause of the obstruction.
• A significant injury to the colon. For example, if the colon becomes permanently damaged due to a puncture or an impact injury.
• Familial adenomatous polyposis (FAP). This 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.

Types of ileostomy

There are three main types of ileostomy:

• Loop ileostomy
• End ileostomy
• Continent ileostomy

Loop ileostomy

During a loop ileostomy, a loop of the small intestine is brought out through the stoma. The procedure is usually only used as a temporary measure when it is necessary to remove part of the rectum. Once the remaining colon has healed it can be reconnected to the small intestine and the stoma can 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 bag. An end ileostomy is usually permanent.

An ileo-anal pouch (also known as a J pouch) is sometimes used as an alternative to an external bag. This is an internal pouch surgically constructed from the small intestine and connected to the sphincter muscle that surrounds the anus. It means bowel actions can be controlled in the normal way.

Ileo-anal pouches are now preferred because they eliminate the external bag. However, they are not suitable for every patient. Disadvantages include having to go to the toilet frequently to empty the pouch.

Continent ileostomy

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

The continent ileostomy provides an option for those unable to have an ileo-anal pouch due to health or technical reasons, or in cases where an ileo-anal pouch stops working and needs to be removed.

After surgery

Recovering from an ileostomy can be challenging. 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 bag
• Feelings of anxiety and self-consciousness

However, with practice and support from a designated stoma nurse, many people do adjust and often report that their quality of life improves after surgery, particularly where the patient has been living for years with a painful digestive condition, like Crohn’s disease.

There are also recommendations after an ileostomy that may help to treat or prevent some of the issues arising from having an ileostomy. This includes:

• A low-fibre diet to help digestion
• Drinking plenty of fluid to avoid dehydration
• Dealing with worries about smells or flatulence
• Taking medication
• Treating soreness due to an ileo-anal pouch

Complications of an ileostomy

Some people may experience complications after an ileostomy, which can include:

• An obstruction
• Vitamin B12 anaemia, due to removal of part of the intestine that absorbs vitamin B12
• Pouchitis (an inflamed internal pouch)
• Stoma problems, such as widening or narrowing of the stoma, making it difficult to insert the pouch.

Why it is used

An ileostomy is performed when the colon is damaged, inflamed, or loses function.

Common uses

The most common uses of an ileostomy include:

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 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 to carry out 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 eventually need to be removed.

However, if you 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 symptoms can be controlled with medication. In a few cases where all treatments prove ineffective, 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). Chemotherapy or radiotherapy (or both) are usually used to shrink the cancer. The section of the bowel or rectum that contains the cancerous cells is then usually removed.

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 effects 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.

Less common uses

Less common uses of an ileostomy are:

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.

Although the lumps are non-cancerous to begin with, 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 old.

Due to the high risk of developing cancerous lumps, it’s usually recommended that a person diagnosed with FAP has their colon removed. It is usually replaced with an ileo-anal pouch, or occasionally 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 happen if part of the person’s digestive system is scarred or inflamed, or if their 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 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.

How it is performed

An ileostomy can be performed in several different ways depending on the underlying condition.

End ileostomy

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

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

Ileo-anal pouch

An ileo-anal pouch (also known as a J pouch) is sometimes used as an alternative to an external stoma pouch.

An ileo-anal pouch is created from the ileum (the end of the small intestine) and joined to the anus so 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 area around the pouch usually needs to heal before it is used, so a temporary loop ileostomy (see below) above the pouch will be created. A second, smaller operation is usually carried out a few months later to close the loop ileostomy.

Sometimes the operation can be performed without creating a temporary ileostomy.

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 colon and rectum are left in place.

The loop is created to direct the waste material from the ileum. This may be necessary to assist with healing after an injury to the colon or following the removal of a diseased section of colon. It may also help to relieve a blockage.

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

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 place. The internal pouch can then be emptied by draining it with a catheter (thin tube).

The continent ileostomy is an option for people who cannot have an ileo-anal pouch due to health or technical reasons, or when an ileo-anal pouch stops working and needs to be removed.

Recovering from an ileostomy

Following an ileostomy, the speed of your recovery will depend on the nature and severity of the condition, complexity of the surgery and age and overall health of the patient.

The average stay in hospital is up to 12 days after the operation. The abdominal wall will initially be very sore, but will settle down.

Normal activities are usually possible four-to-eight weeks after an ileostomy and an ileo-anal pouch. Keeping active can help to reduce the risk of developing complications, but strenuous activity should be avoided for about three months. Dr. B C Shah will be able to give you further advice about this.

Living with an ileostomy

After an ileostomy, you will be referred to a stoma nurse who specialises in helping people with a stoma. The nurse will advise you about equipment you’ll need and how to manage your stoma.

However, with practice and the support of your stoma nurse and family, using the pouch will become routine. You will be able to live a normal life and, based on recommendations from Dr. B C Shah, you will be able to choose what you eat, participate in many kinds of sport and return to work.

You can also choose who you tell about your surgery, and if you wish to keep it private most people find they are able to conceal their pouches.

Many people with a stoma say their quality of life has improved since having an ileostomy because they no longer have to cope with distressing and uncomfortable symptoms.

Stoma bag

Choosing the right stoma pouch is important. The system should be as comfortable as possible. Your stoma nurse will be able to provide advice about this.

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

It is recommended that you empty your bag when it is one-third full because this will prevent the bag from bulging underneath your clothes. Stoma bags usually have to be replaced every three-to-seven 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 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 system. Occasionally, larger areas of the skin can become inflamed. If this occurs, contact Dr. B C Shah, who will be able to prescribe a powder or spray to treat this.

Ileo-anal pouch

If you have had an ileo-anal pouch created through surgery, you may find 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 you need to go to the toilet will slowly reduce as the pouch expands and you get used to controlling muscles that surround it.

Most people find 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 up to eight 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 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 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 aim for 10 short, fast and strong contractions.

Continent ileostomy

For the first few weeks after surgery, a catheter (thin tube) will be permanently connected to your pouch and to a drainage bag strapped to your leg. This is so the pouch can heal.

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

By the third or fourth week after surgery, your pouch should have healed enough for the catheter to be removed, and you can then drain the pouch regularly into a basin or other container.

For the first few weeks, you may need to drain the pouch every two to three hours, before attaching the catheter to a drainage bag when you sleep 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 up to six 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 to prevent irritation or infection. Regularly clean this area using water and a mild soap.

Recommendations

The following recommendations may help to self-treat or prevent issues that can arise after having an ileostomy.

Diet

It’s a good idea to eat a low-fibre diet for the first few months after your operation. This is because the surgery causes your bowels to swell, making digesting fibre difficult.

Once the swelling has subsided (usually after eight weeks) you can resume a normal diet. You may need to take vitamin supplements until then.

Try 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 you can keep a record of the food that you have eaten, and how you feel afterwards.

Eat a 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 to re-absorb water and minerals (sodium and potassium) back into the body. Therefore, it is important to drink plenty of water particularly 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 flatulence (gas). This is harmless, but it can be embarrassing and uncomfortable. Don’t worry though, as the gas should subside as your bowels become less inflamed (swollen).

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

Some people find eating six small meals a day, rather than three main meals, helps to reduce flatulence. If the problem persists, Dr. B C Shah should be able to recommend a medicine that can help to reduce gas.

Smell

Many people worry their external bag will smell. This is unlikely if you use an odour-resistant system and empty the bag regularly. Special liquids and tablets are available to place in your bag to reduce odour. Eating yoghurt and buttermilk can also help.

Medication

Many medicines are 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 bag.

Let Dr. B C Shaht know about your stoma so that they can 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. Dr. B C Shah will be able to advise about the best cream for you. Use a small amount of cream every time you empty your pouch.

Complications of ileostomy

As with any surgery, complications can develop during or soon after having an ileostomy. Discuss the risks with Dr. B C Shah before the procedure.

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 contact Dr. B C Shah.

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 decrease in their levels of vitamin B12. Vitamin B12 plays an important role in regulating the brain and nervous system.

This decrease is thought to occur because the part of the intestine removed during the procedure is responsible for absorbing some vitamin B12 from food 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 or both ears or inside your head)
• Loss of appetite

If you have had an ileostomy and experience any of these symptoms, contact Dr. B C Shah, who will be able to arrange a blood test to check your vitamin B12 levels.

It is important not to ignore these types of symptoms because if vitamin B12 anaemia is left untreated, it can cause more serious problems with your nervous system, such as memory loss.

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

Read more information about vitamin B12 anaemia.

Pouchitis

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

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 ileostomy experience problems related to their stoma. These can include:

• Irritation and inflammation of the skin around the stoma, which can make it difficult to hold the bag in position
• Narrowing of the stoma (stoma stricture), which can make it difficult to fit the bag onto the stoma
• Widening of the stoma (stoma prolapse), which can make it difficult to hold the bag in place

If you experience any of these problems, you should contact Dr. B C Shah for advice. Skin irritation can usually be treated with topical treatments, such as a spray.

You may need to have minor surgery to correct a stoma stricture or prolapse.

Valve malfunction

A common complication of a continent ileostomy is that the valve connected to the internal pouch can stop working due to the valve narrowing or being pulled out of position. In this circumstance, minor surgery is required either to 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 the toilet, even though they do not have a working rectum. This feeling can continue many years after surgery. Some people have found sitting on a toilet can help to relieve this feeling.