Ileostomy - Living with an ileostomy

Although it can be difficult to adjust at first, having an ileostomy does not mean you cannot 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 are 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 will be 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 will be collected in a stoma bag.

There is 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 do not release any unpleasant odours. They can be easily drained through an opening in the bottom and can be concealed under everyday clothes.

It is usually best to empty your bag into a toilet when it is about one-third full because this will prevent the bag from bulging underneath your clothes. You will usually be advised to replace the bags and dispose of them in the general rubbish (not down the toilet) every one or two 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 practice 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 will be entitled to free NHS prescriptions for necessary products.

You will be given an initial supply of stoma bags before you leave hospital, as well as your prescription information. You should 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 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. 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 will 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 eight weeks, you will 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 five portions a day) and whole grains.

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 that you have eaten, and how you feel afterwards.

For example, you may find that you experience diarrhoea after eating spicy foods or drinking alcohol or caffeinated drinks.

Dehydration

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

Therefore, it is important to drink plenty of water if you have an ileostomy, particularly in hot weather or during periods where you are 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 flatulence (gas). 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 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.

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 that have 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. Therefore, 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 that 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 have fully recovered from surgery, there is 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 that 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 to living with an ileostomy because the procedure does not involve creating a stoma in the abdomen (tummy). Instead, digestive waste is stored in an internal pouch and is excreted through the rectum and anus.

If you have 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 six 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 (known as pelvic floor muscles) can help make going to the toilet easier if you have an ileo-anal pouch and can 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 knees slightly apart
• without moving your abdominal muscles, squeeze the muscle around the back passage as if you are 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 and using a skin protection cream is also recommended. Your GP will be able to advise you about the best cream for you.