Ileostomy

An ileostomy is where the small bowel (small intestine) is diverted through an opening in the tummy (abdomen).

The opening is known as a stoma. A special bag is placed over the stoma to collect waste products that usually pass through the colon (large intestine) and out of the body through the rectum and back passage (anus).

Ileostomy procedures are relatively common in the UK. More than 9,000 are carried out each year in England.

When is an ileostomy needed?

Ileostomies are formed to either temporarily or permanently stop digestive waste passing through the full length of the small intestine or colon.

There are a number of reasons why this may be necessary, including:

• to allow the small intestine or colon to heal after it's been operated on – for example, if a section of bowel has been removed to treat bowel cancer
• to relieve inflammation of the colon in people with Crohn's disease or ulcerative colitis
• to allow for complex surgery to be carried out on the anus or rectum

Read more about why ileostomy procedures are carried out.

The ileostomy procedure

Before an ileostomy is formed, you'll normally see a specialist stoma nurse to discuss exactly where you'd like your stoma to be (usually somewhere on the right-hand side of the abdomen) and to talk about living with a stoma.

There are 2 main types of ileostomy:

• loop ileostomy – where a loop of small intestine is pulled out through a cut (incision) in your abdomen, before being opened up and stitched to the skin to form a stoma
• end ileostomy – where the ileum is separated from the colon and is brought out through the abdomen to form a stoma

Alternatively, it's sometimes possible for an internal pouch to be created that's connected to your anus (ileo-anal pouch). This means there's no stoma and stools are passed out of your back passage in a similar way to normal.

End ileostomies and ileo-anal pouches are usually permanent. Loop ileostomies are usually intended to be temporary and can be reversed during an operation at a later date.

After surgery

You may need to stay in hospital for up to 2 weeks after an ileostomy operation. During this time you'll be taught how to look after your stoma by a specialist stoma nurse.

Recovering from the procedure can be challenging. Many people experience short-term physical and psychological problems, ranging from skin irritation around the stoma to feelings of anxiety and self-consciousness.

However, with practise and support from a designated stoma nurse, many people adjust and often find their quality of life improves after surgery. This is especially true if they've been living for years with a condition such as Crohn's disease.

Complications

As with any surgical procedure, having an ileostomy carries a risk of complications. Some of the problems people with an ileostomy experience include:

• a bowel obstruction – where the output of digestive waste is blocked
• vitamin B12 deficiency – caused by the removal of part of the intestine that absorbs vitamin B12
• stoma problems – such as widening or narrowing of the stoma, making it difficult to attach the external bag

An ileostomy may be needed if the colon is damaged, inflamed or doesn't work properly.

Some of the most common reasons why surgery to form an ileostomy is carried out are described below.

Crohn's disease

Crohn's disease is a long-term condition where the digestive system becomes inflamed. Common symptoms include:

• diarrhoea
• abdominal pain
• extreme tiredness (fatigue)

Crohn's disease can usually be controlled with medication, but surgery to create an ileostomy may sometimes be recommended to temporarily divert digestive waste away from the inflamed section of the digestive system to give it a chance to heal.

Ulcerative colitis

Ulcerative colitis is a long-term condition where the lining of the large intestine or large bowel (colon or rectum) becomes inflamed. Common symptoms include:

• bloody diarrhoea
• abdominal pain
• a frequent need to pass stools

In most cases symptoms can be controlled with medication. However, surgery to remove the colon and form an ileostomy or ileo-anal pouch – an internal pouch to store stools created using the end of the small intestine – may be recommended if the condition is particularly severe or doesn't respond to medication.

Bowel cancer

Bowel cancer is a type of cancer that develops inside the colon or rectum. Chemotherapy or radiotherapy, or a combination of both, may be used to shrink the cancer first, before the affected section of bowel is removed.

Depending on the size and position of the removed section of bowel, a temporary ileostomy, permanent ileostomy, or an ileo-anal pouch may be formed during the operation.

In some cases, a section of your colon may need to be diverted out of your tummy (abdomen). This is known as a colostomy, rather than an ileostomy.

Less common uses

Some of the less common reasons why surgery to form an ileostomy is needed are described below.

Familial adenomatous polyposis

Familial adenomatous polyposis (FAP) is a rare condition that triggers the growth of non-cancerous lumps of tissue inside the colon.

Although the lumps are non-cancerous to begin with, there's a very high risk that, over time, at least one will turn cancerous. More than 99% of people with FAP have bowel cancer by the time they're 50 years old.

Because of the high risk of developing cancerous lumps, it's usually recommended that a person diagnosed with FAP has their colon removed. It's usually replaced with an ileo-anal pouch, or occasionally a permanent 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's usually necessary to remove the colon and form 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 impact injury, can result in the colon becoming permanently damaged.

In these cases, it may be necessary to remove the colon and form an ileostomy. Whether this is a temporary or permanent ileostomy depends on the type and extent of the injury.

There are several different ways an ileostomy can be formed, depending on the reason why the operation is being carried out.

The opening in your tummy (abdomen) where waste material exits the body after the operation (stoma) will normally be located on the righthand side.

However, you'll usually meet a specialist stoma nurse before the operation to discuss specific possible locations. The stoma nurse may draw a dot on your abdomen to let the surgeon know where the preferred site is.

Types of ileostomy

Ileostomy operations are carried out under general anaesthetic, which means you'll be asleep during the procedure and won't experience any pain as it's carried out.

The 2 main types of ileostomy are described below.

End ileostomy

An end ileostomy normally involves removing the whole of the colon (large intestine) through an incision in your abdomen.

The end of the small intestine (ileum) is divided and brought out of the abdomen through a smaller incision, and stitched on to the skin to form a stoma.

Over time, the stitches dissolve and the stoma heals on to the skin. After the operation, waste material comes out of the opening in the abdomen into a bag that goes over the stoma.

This type of ileostomy is often, but not always, permanent.

Loop ileostomy

To form a loop ileostomy, a loop of small intestine is pulled out through a cut (incision) in your abdomen.

This section of intestine is then opened up and stitched to the skin to form a stoma. The colon and rectum are left in place.

In these cases, the stoma will have two openings, although they'll be close together and you may not be able to see both.

One of the openings is connected to the functioning part of your bowel. This is where waste products leave your body after the operation.

The other opening is connected to the "inactive" part of your bowel that leads down to your rectum.

The loop ileostomy is usually temporary and may be reversed during a second operation at a later date.

Ileo-anal pouch

In some cases, it may be possible to have a permanent internal ileo-anal pouch, also known as a J pouch, formed instead of an ileostomy.

An ileo-anal pouch is created from the ileum and joined to the anus, so waste material passes out of your body in the normal way. The pouch stores the waste material until you excrete it when you go the toilet.

The area around the pouch usually needs to heal before it's used, so a temporary loop ileostomy may be created above the pouch. A second, smaller operation is usually carried out a few months later to close the loop ileostomy.

After an ileostomy procedure, you'll need to stay in hospital for a few days while you recover.

When you wake up after the operation, you may be attached to a drip placed directly into your vein that provides fluids (an intravenous drip) and have an oxygen mask or nasal tubes (cannula) to help you breathe. These will be removed as you recover.

A special bag is also placed over the opening in your abdomen (stoma). The stoma will initially appear large because the effects of surgery cause it to swell. It usually shrinks during the weeks after the operation, reaching its final size after about 8 weeks.

Stoma nurse

While you're recovering in hospital, a stoma nurse will teach you how to care for your stoma, including how to empty and change the bag.

They'll also teach you how to keep your stoma and the surrounding skin clean and free from irritation. The nurse will explain the different types of equipment available and how to get new supplies.

Going home

You may need to stay in hospital for up to 2 weeks after the operation, although this varies depending on things like your general health and the type of operation.

Your stoma nurse or surgeon will give you advice about activities to avoid while you recover. Most normal activities are usually possible within 8 weeks, although you'll often be advised to avoid more strenuous activities for about 3 months.

Your abdomen will feel very sore initially during your recovery, but eventually settles down. You may also experience excessive gas (flatulence) and unpredictable discharge from your stoma during the first few weeks of recovery. This should start to improve as you recover from the effects of the operation.

As with any surgery, complications can develop during or soon after an ileostomy operation. Discuss the risks with your surgeon before the procedure.

Some of the main problems that can occur after an ileostomy or ileo-anal pouch procedure are described below.

Obstruction

Sometimes the ileostomy doesn't function for short periods of time after surgery. This isn't usually a problem, but if your stoma isn't active for more than 6 hours and you experience cramps or nausea, you may have an obstruction.

If you think you may have an obstruction, contact your GP or stoma nurse for advice. They may recommend:

• avoiding solid foods for the time being
• drinking plenty of fluids
• massaging your tummy and the area around your stoma
• lying on your back, pulling your knees up to your chest and rolling from side to side for a few minutes
• taking a hot bath for 15-20 minutes to help relax the muscles in your tummy

In persistent or severe cases, you may be advised to go to your nearest accident and emergency (A&E) department as there's a risk your bowel could burst (rupture).

Dehydration

You're at an increased risk of becoming dehydrated if you have an ileostomy because the large intestine, which is either removed or unused if you have an ileostomy, plays an important role in helping absorb water from food waste.

This makes it important to make sure you drink enough fluids to keep your urine a pale yellow colour to prevent complications of dehydration, such as kidney stones and even kidney failure.

Rectal discharge

People who have an ileostomy but have an intact large intestine often experience a discharge of mucus from their rectum.

Mucus is a liquid produced by the lining of the bowel that acts as a lubricant, helping the passage of stools. It's still produced even though it no longer serves any purpose.

The mucus can vary from a clear "egg white" to a sticky, glue-like consistency. If there's blood or pus in the discharge, contact your GP as it may be a sign of infection or tissue damage.

Many people find the most effective method of managing rectal discharge is to sit on the toilet each day and push down as if passing a stool. This should help remove any mucus located in the rectum and prevent it building up.

Contact your GP if you find this hard to do or it's not helping, as you may need further treatment.

Vitamin B12 deficiency

Some people who have had an ileostomy will experience a gradual decrease in their levels of vitamin B12. Vitamin B12 plays an important role in keeping the brain and nervous system healthy.

This decrease is thought to occur because the part of the intestine removed during the procedure is responsible for absorbing some vitamin B12 from the food you eat.

In some people, the fall in vitamin B12 levels can cause 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
• feeling faint
• irregular heartbeats (palpitations)
• headache
• hearing sounds coming from inside the body rather than from an outside source (tinnitus)
• loss of appetite

If you've had an ileostomy and experience any of these symptoms, contact your GP. They'll be able to arrange a blood test to check your vitamin B12 levels.

It's important not to ignore these types of symptoms – if vitamin B12 deficiency is left untreated, it can cause more serious problems with your nervous system, such as memory loss and damage to the spinal cord.

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

Stoma problems

Some people with an ileostomy experience problems related to their stoma, such as:

• irritation and inflammation of the skin around the stoma
• narrowing of the stoma (stoma stricture)
• widening of the stoma (stoma prolapse)
• an internal part of the body, such as an organ, pushing through a weakness in the muscle or surrounding tissue wall (parastomal hernia)
• the stoma sinking below the level of the skin after the initial swelling goes down (stoma retraction) 
• the stoma may get longer with time as more of the bowel pushes itself out of the abdomen (prolapse)

If you think you may have a problem with your stoma, contact your GP or stoma nurse for advice.

Skin irritation can usually be treated with topical treatments, such as a spray, but you may need to have further surgery to correct physical problems related to your stoma.

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 it's still there.

People with phantom rectum feel like they need to go to the toilet, even though they don't 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.

Pouchitis

Pouchitis is when an internal pouch becomes inflamed. It's a common complication in people with an ileo-anal pouch or continent ileostomy.

Symptoms of pouchitis include:

• diarrhoea, which is often bloody
• abdominal pains
• stomach cramps
• a high temperature (fever)

Speak to your GP if you have symptoms of pouchitis. The condition can usually be successfully treated with a course of antibiotics.

Although it can be difficult to adjust at first, having an ileostomy doesn't mean you can't have a full and active life.

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.

However, if you're finding it difficult to adjust after your operation, it may help to get in contact with others who have had similar experiences through support groups such as the Ileostomy and Internal Pouch Support Group.

You may also find the following information useful if you have an ileostomy, or are due to have one in the near future.

Ileostomy equipment

Before and after the ileostomy procedure, you'll see a 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.

Stoma bags

Your stoma will produce liquid digestive waste that can range from a watery consistency to a consistency similar to porridge, which is collected in a stoma bag.

There's a wide range of stoma bags available, but a specialist stoma nurse can help you choose the most suitable appliance for you.

To help reduce skin irritation, stoma bags are made from hypoallergenic (non-allergic) material, and contain special filters to help ensure the bags don't release any unpleasant odours.

They can be easily drained through an opening in the bottom and can be concealed under everyday clothes.

It's usually best to empty your bag into a toilet when it's about one-third full as this prevents the bag bulging underneath your clothes.

You'll usually be advised to replace the bags and dispose of them in the general rubbish – not down the toilet – every 1 or 2 days.

At first, living with an ileostomy can be a distressing experience. It may take some time before you get used to it, but with practise and the support of your stoma nurse and family, using stoma bags will become routine.

Other equipment and products

There are also additional products that can make living with an ileostomy more convenient, including:

• support belts and girdles
• deodorisers that can be inserted into your appliance 
• protective skin wipes
• adhesive remover sprays
• protective stoma guards

Your stoma care nurse will be able to advise you about the most appropriate equipment to help you manage your ileostomy successfully.

Ordering and paying for equipment

If you have an ileostomy, you'll be entitled to free NHS prescriptions for necessary products.

You'll be given an initial supply of stoma bags before you leave hospital, as well as your prescription information. Let your GP know your prescription information so they can make a note of it in your medical records and issue prescriptions in the future.

Your prescription can either be taken to the chemist or sent to a specialist supplier who will deliver the appliances. There's no need to stockpile supplies, but it's recommended that you order more appliances while you still have plenty left so you don't run out.

Stoma care

The output of your stoma can cause irritation to the skin surrounding the opening, so it's 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's caused by delicate blood vessels in the tissues of the stoma, which can bleed easily. The bleeding will soon stop.

Burning or itching skin is a sign that you need to change your equipment. If a large area of skin becomes inflamed, contact your GP or stoma nurse, who will be able to prescribe a cream, powder or spray to treat this.

Diet

In the first few weeks after surgery, you'll usually be advised to follow a low-fibre diet.

This is because having a high-fibre diet can increase the size of your stools, which can cause the bowel to become temporarily blocked. After around 8 weeks, you'll usually be able to resume a normal diet.

As you recover, you should try to eat a healthy, balanced diet that includes plenty of fresh fruit and vegetables – at least 5 portions a day – and wholegrains.

If you decide to introduce new foods into your diet after surgery, try to introduce them slowly, at the rate of one type of food each meal. 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 you've eaten and how you feel afterwards. For example, you may find you experience diarrhoea after eating spicy foods, or after drinking alcohol or caffeinated drinks.

Dehydration

If you no longer have a large intestine (colon), you're at greater risk from dehydration. This is because one of the functions of the colon is to reabsorb water and minerals back into the body.

It's therefore important to drink plenty of water if you have an ileostomy, particularly in hot weather or during periods where you're more active than normal. Sachets of fluid replacement solutions to help reduce dehydration are also available from pharmacies.

Smell and wind

In the first few weeks after surgery, you may experience a lot of gas (flatulence). This is harmless, but it can be embarrassing and uncomfortable. This problem should subside as your bowels recover from the effects of surgery.

Chewing food thoroughly and not eating foods that cause gas can help. These include:

• beans
• broccoli
• cabbage
• cauliflower
• onions
• eggs

Fizzy drinks and beer also cause gas. Don't skip meals to try to prevent gas because it will make the problem worse.

If the problem persists, your GP or stoma nurse should be able to recommend a medicine that can help to reduce gas.

Many people also worry their external bag will smell. However, all modern appliances have air filters with charcoal in them, which neutralises the smell. If necessary, special liquids and tablets that are placed in the bags are available to reduce any odour.

Medication

Many medicines are designed to dissolve slowly in your digestive system. This means some medications may not be as effective if you have an ileostomy because they could come straight out into your bag.

Let your GP or pharmacist know about your stoma so they can recommend an alternative type of medicine, such as an uncoated pill, powder or liquid.

In women, having a ileostomy can affect the effectiveness of oral contraceptive pills, so you may want to discuss alternative forms of contraception with your GP or pharmacist.

Activities

Once you've fully recovered from surgery, there's no reason you can't return to most of your normal activities, including work, sports, travelling and having sex.

Speak to your stoma nurse before returning to your normal activities, however, as they can offer advice about issues you may need to take into consideration now you have an ileostomy.

For example, they can advise you about wearing protective stoma guards while playing sports, or stocking up on ileostomy products before travelling.

Living with an ileo-anal pouch

Living with an ileo-anal pouch is different from living with an ileostomy because the procedure doesn't involve creating a stoma in the tummy (abdomen). Instead, digestive waste is stored in an internal pouch and excreted through the rectum and anus.

If you've had an ileo-anal pouch, you may find you need to empty it 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 6 to 12 months, although the number of bowel movements will differ from person to person.

Improving muscle control

Exercising the muscles that control the passing of stools (pelvic floor muscles) can help make going to the toilet easier if you have an ileo-anal pouch. It can also reduce the likelihood of accidental leaks during the first few weeks after the operation.

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

• sit or lie comfortably with your knees slightly apart
• without moving your abdominal muscles, squeeze the muscle around the back passage as if you're trying to stop passing 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.

Anal soreness

Anal soreness or itchiness is 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.

If your ileostomy is intended to be temporary, further surgery will be needed to reverse it at a later date.

The reversal operation will only be carried out when you're in good health and fully recovered from the effects of the original ileostomy operation. This will usually be several weeks or months after the initial surgery, or sometimes even longer.

There's no time limit for having an ileostomy reversed and some people may live with one for several years before it's reversed.

Reversing a loop ileostomy is a relatively straightforward procedure that's carried out under general anaesthetic.

A cut (incision) is made around the stoma and the section of small intestine is pulled out of the tummy (abdomen). The area that had been divided to form the stoma is then stitched back together and placed back inside the abdomen.

It's also sometimes possible to reverse an end ileostomy if most of the large intestine (colon) has been sealed and left inside the abdomen.

However, the surgeon will need to make a larger incision to locate and reattach the small and large intestines. It therefore takes longer to recover from this type of surgery and there's a greater risk of complications.

Recovering from ileostomy reversal surgery

Most people are well enough to leave hospital within 3 to 5 days of having ileostomy reversal surgery.

While you recover, you may have diarrhoea and need to go to the toilet more often than normal.

It can take a few weeks for these problems to settle and your bowel activity may never return to the way it was before you had the ileostomy operation.

If necessary, your GP can prescribe medication to relieve diarrhoea until things improve.

You may also experience a sore anus after the reversal operation. This should improve as the anus becomes used to having stools pass through it again, although common barrier creams can help.

The reversal operation is usually a smaller procedure than the initial ileostomy procedure. However, it still takes several weeks to fully recover.