Ileostomy

An ileostomy is a surgical procedure involving the small intestine. The small intestine is part of the digestive system.

The digestive system

When we eat, the food 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. The digested food then moves into the colon (the large intestine) 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 end of the small intestine, known as the ileum, is diverted from the colon, and re-routed through a hole that the surgeon cuts in your abdomen. The hole, or opening, is called a stoma.

An external pouch may be connected to the stoma to collect any waste products. The operation is usually carried out when the colon is damaged, or if it has to be removed.

Types of ileostomy

There are two types of ileostomy - an end ileostomy and a loop ileostomy.

• End ileostomy - the colon and rectum are removed and the end of the ileum is brought out through the stoma.
• Loop ileostomy - a loop of the small intestine is brought out through the stoma, but the colon and rectum are not removed. This is usually carried out as a temporary procedure, when it is necessary to remove only a 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.

Ileo-anal pouches

A loop ileostomy is also sometimes used in the construction of ileo-anal pouches. Ileo-anal pouches are internal pouches that are surgically constructed from the small intestine. The pouches are constructed for people who need to have their colon and rectum removed. The pouch is then connected to the sphincter muscle, which is the muscle that surrounds the anus.

Once the surgery is complete, it is important that the pouch remains free of waste materials for a few weeks so that it can heal. Therefore, the loop ileostomy allows waste to pass through the stoma, without affecting the pouch. Once the pouch is healed, the small intestine is connected to the pouch, allowing the stoma to heal.

Ileo-anal pouches are not suitable for everyone who has their colon removed, and some people will need to have a permanent end ileostomy.

An ileostomy may be carried out following the removal of an inflamed, or diseased, colon. This might be due to a condition such as:

• Ulcerative colitis - this leads to inflammation and ulceration of the lining of the large bowel, causing diarrhoea containing blood and mucus.
• Crohn's disease - this is an inflammatory bowel disease which affects any part of the gastrointestinal system. It can cause pain and diarrhoea containing blood and mucus.
• Colon cancer
• Familial adenomatous polyposis (FAP) - this is an inherited condition which affects the colon and rectum. People with FAP develop polyps (adenomas) inside the large bowel. An adenoma may become cancerous.

Many people who have ulcerative colitis, and FAP, choose to have an ileo-anal pouch instead of an ileostomy, after removal of the affected colon. If you have ulcerative colitis and FAP, your GP will be able to discuss your options with you.

End ileostomy

An end ileostomy involves removing the whole of the colon, rectum and anus.

The ileum (the end of the small intestine) is brought out of the abdomen creating a permanent stoma (opening). It is then stitched into place.

The waste material comes out into a pouch, which is made of an adhesive material that sticks to your skin, and worn under your clothes. The bag needs to be emptied regularly. It is recommended to empty the bag when it is one-third full, as this will prevent bulging and the possibility of a leak.

Loop ileostomy

A loop ileostomy is an operation which 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 in order to aid the healing of an injury to your bowel, following the removal of a diseased section, or the entire colon, or to relieve a blockage.

The loop ileostomy is usually a temporary stoma and it 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 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 done in two stages. First, your colon and rectum are removed, before the pouch is created and joined to the anus. It is usually necessary to let the area surrounding the pouch, heal before it is used, so a temporary loop ileostomy above the pouch is created.

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

Prospects

Many people who have been fitted with a pouch report that they experience very few, or no, problems. In a survey carried out in 2005 by the John Radcliffe Hospital (a hospital in Oxford that pioneered the technique), 92% of people who underwent the procedure thought that it had been worthwhile.

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

Normal activities are usually possible 4-8 weeks after surgery for both 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 advise you about this.

Living with an ileostomy

After you have had an ileostomy, you will be referred to a stoma nurse. A stoma nurse is someone who 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 how best 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. Once properly fitted, a stoma pouch is impossible to see under everyday clothes.

It is recommended that you empty your pouch when it is one-third full, as this will prevent the pouch from bulging underneath your clothes. Pouches normally have to be replaced every 3-7 days.

Stoma care

The output of your stoma (which is a continual flow of 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 water and a mild soap.

You may notice small spots of blood around the stoma when you clean it, but this is perfectly normal. The blood vessels in the tissues of the stoma are very delicate, and can bleed easily. However, the bleeding will soon stop.

Burning, or itchiness of the skin, is a sign that you need to change your pouching system. Occasionally, larger areas of the skin can become inflamed. You should contact your GP, or stoma nurse, who will be able to prescribe powders, or sprays, 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 the pouch (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' will settle down after six months to a year. However, the number of bowel movements will differ from person to person. Some people will only need to empty their pouch twice a day, whereas others may have to empty it between 6-8 times a day.

Leakage

Almost half of all people who experience leakage from their pouch do so in the first few weeks after the operation. This problem is normally 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.

Diet

In 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', in which you can keep a record of the food that you have eaten, and how you feel afterwards.

If you have an ileostomy, dietary advice is similar to that for people without one. You should eat a balanced diet, including plenty of fresh fruit and vegetables (five portions a day) and whole grains. Many people with an ileostomy find it best to avoid nuts as 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 have been 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 following surgery, you may experience a lot of gas. This is harmless, but can be embarrassing and uncomfortable. However, the gas should subside as your bowels become less swollen.

Avoiding certain 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, do not skip meals 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 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 it 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. Having regular baths should help. Using a skin protection cream is also recommended. Your GP will be able to recommend the best cream for you. You should use a small amount of cream every time you empty your pouch.

Obstruction

Sometimes the ileostomy does not function for short periods of time. This is not usually a problem. But if your stoma is not active for more than six hours, and you experience cramps and/or nausea, you may have an obstruction. 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.

Phantom rectum

Phantom rectum is a complication that 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. This feeling can continue to occur many years after surgery. Some people have found that sitting on a toilet can help relieve the feeling.

Pouchitis

A common complication in people with an ileo-anal pouch is pouchitis. This is inflammation of the pouch. The exact cause of pouchitis is unknown, but some doctors believe that small pieces of stools (faeces) can remain in the pouch and cause irritation.

Symptoms of pouchitis may include:

• abdominal pain,
• bleeding,
• raised temperature,
• diarrhoea, and
• dehydration.

Pouchitis can normally be successfully treated using a short course of antibiotics.