Ileostomy

Overview

An ileostomy is a surgically made opening on the surface of your tummy (abdomen). The end of your small bowel — the part called the ileum — is brought through this opening and stitched to your skin. Waste (stool) then leaves your body into a small, soft, waterproof bag stuck over the opening, instead of passing out through your bottom. The opening itself is called a stoma. It looks a bit like the inside of your cheek — pink, moist and soft. It has no nerve endings at the surface, so touching or cleaning it does not hurt. An ileostomy is not an illness in itself. It is a way of letting waste out when your large bowel (colon) needs to be rested, bypassed or removed, or when part of your bowel has to be taken away.

Many thousands of people live with a stoma, and stoma care is a routine part of everyday hospital and community care. An ileostomy is less common than a colostomy (an opening made from the large bowel).

People of any age can have an ileostomy. It is most often done in adults with conditions such as inflammatory bowel disease or bowel cancer, and in babies and children born with problems in how the bowel formed. Men and women are affected equally.

Symptoms

Common symptoms

• Passing loose or semi-liquid stool into the bag, often several times a day, usually with little warning
• Wind and gurgling sounds from the stoma, which are normal
• Needing to empty the bag when it is about one-third to half full, to avoid leaks
• Redness, soreness or broken skin around the stoma, often from stool getting under the seal
• Output that varies with what you eat and drink, and with illness or stress

Symptoms in children

• Worry and embarrassment about the bag at school, during sports or sleepovers
• Extra risk of dehydration, because children can lose fluid quickly and may not notice thirst
• Slower growth or weight gain if the underlying bowel condition is active — this is checked at follow-up visits
• Skin soreness, because a child's skin is more delicate and bags may need changing more often

Symptoms in older adults

• Higher risk of dehydration, which can cause confusion, dizziness and falls
• Thinner, more fragile skin that is easier to damage when changing the bag
• Difficulty seeing or reaching the stoma, or handling the bag if hands are shaky or weak — an stoma nurse can suggest aids
• Medicines that affect bowel output or fluid balance may need review by a doctor or pharmacist

Causes

Main causes

• Inflammatory bowel disease, such as ulcerative colitis or Crohn's disease, when the large bowel must be removed or rested
• Bowel cancer, or conditions that run in families and raise cancer risk, where part of the bowel is removed
• A blocked or severely damaged bowel that cannot be safely joined back together
• Injury to the bowel, or a serious infection inside the tummy
• Birth defects in how the bowel formed, in babies and children
• Severe problems in the lower bowel or back passage that make passing stool normally impossible

Risk factors

• Having a long-term inflammatory bowel condition
• A family history of bowel cancer or inherited bowel conditions
• Previous surgery on the bowel or tummy
• Emergency abdominal surgery, where an ileostomy may be made to let the bowel heal safely

When to see a doctor

See a doctor urgently if:

• Very high stoma output with thirst, dizziness, dark urine or not passing urine
• No output from the stoma with vomiting, cramps and a swollen tummy
• Skin around the stoma that is bleeding, broken or looks infected
• A sudden change in the stoma's colour, size or shape
• Feeling generally very unwell, with fever or spreading tummy pain

Book a routine appointment if:

• The bag keeps leaking or the seal fails, even though you are changing it correctly
• Ongoing sore skin that does not heal between bag changes
• Questions about diet, medicines, travel, work or intimacy
• You feel low, anxious or isolated about living with a stoma
• You are due your routine stoma review, or you have not been seen for a while

Diagnosis

An ileostomy is not a condition you are diagnosed with — it is created during an operation. Most of the preparation happens before surgery, when your medical team works out why the operation is needed, whether the ileostomy will be temporary or permanent, and where on your tummy it should go. A specialist stoma care nurse usually meets you beforehand to mark the best spot and to show you the equipment.

Tests that may be done

• Blood tests to check your general health, nutrition and levels of salts and vitamins
• Scans such as CT or MRI to look at the bowel and plan the operation
• A camera test of the bowel (colonoscopy), sometimes with a small sample of tissue taken
• X-rays or a special X-ray study using a contrast drink to look at the bowel
• A check of the skin on your tummy and a discussion about your job, clothes and lifestyle to choose the stoma site

What to expect at your appointment

Before surgery you will usually have a conversation about what the operation involves, what the bag will be like, and how to care for it. After surgery, your stoma nurse will teach you step by step — how to empty and change the bag, how to look after your skin and what to eat and drink. You will not be sent home until you feel confident, and you can keep getting support afterwards.

Treatment

The main 'treatment' after an ileostomy is good stoma care: a well-fitting bag, gentle skin care, enough fluid, and food choices that keep output comfortable. Alongside this, your medical team will treat the condition that led to the operation and check you regularly. Most people become confident and independent with their stoma within a few weeks to a few months.

Self-care at home

• Empty the bag when it is about a third to half full — this prevents leaks and heavy bags
• Change the bag and skin seal on a regular routine, usually every one to three days, or sooner if it leaks
• Clean the skin around the stoma gently with warm water and pat dry — you do not usually need soap or alcohol wipes
• Drink regularly through the day, and more in hot weather, during exercise or when you are unwell
• Keep a simple diary of foods and output if you are having problems — patterns are often easy to spot
• Carry a small changing kit with you, and tell a trusted person where it is
• Check the skin each time you change the bag and ask your stoma nurse about any sore patch early

Medical treatments

Your team may use medicines to treat the underlying bowel condition, to slow down a very high output, or to replace salts and vitamins when levels are low. Some people need vitamin supplements, especially vitamin B12, if a large part of the bowel was removed. Medicines that reduce output should only be used with advice from your doctor or stoma nurse, because the dose and timing matter. Your pharmacist can check whether any of your other medicines affect stoma output or how well they are absorbed.

When is surgery considered?

Surgery is needed to create the ileostomy in the first place, and sometimes later to reverse it or to correct problems such as a hernia or a narrowed stoma. Reversal may be possible if the lower bowel has healed and is working — your surgeon will explain whether this is an option for you and what the risks and benefits are. Some people choose to keep a well-working, permanent stoma rather than have more surgery.

Living with this condition

Life with an ileostomy settles into a routine fairly quickly. Most people empty the bag a few times a day, often at home and sometimes in a public toilet — it takes only a couple of minutes. Bag changes are usually done sitting or standing in the bathroom with a mirror. You can shower or bathe with or without the bag on. With a good-fitting appliance and a little planning, work, travel, swimming and sport are all possible.

Lifestyle tips

• Eat regular meals and chew well; eating little and often can reduce wind and sudden changes in output
• Chew foods that are harder to break down, such as nuts, sweetcorn, mushrooms and raw vegetables, especially when you are new to your stoma
• Keep hydrated — sip water through the day rather than large amounts at once, and watch out for extra losses in hot weather
• Tell your stoma nurse about any food that reliably causes problems for you, rather than cutting out whole food groups
• Build activity up gradually after surgery; walking is a good starting point, and gentle core exercises can help prevent a hernia
• Pack spare bags and a change of clothes in hand luggage, and check what is available at your destination before travelling

Diet and exercise

There is no single 'stoma diet'. Most people find a varied, balanced diet works well, with a few personal adjustments. Some foods may thicken output (such as bananas, white rice and pasta) and others may loosen it (such as fruit juice, spicy food or large amounts of sugar). Try one new food at a time so you know what suits you. Drink enough fluid, particularly in warm weather or when exercising. Exercise is safe and helpful once you have healed — start gently, avoid heavy lifting in the first weeks, and think about a support belt or stoma support garment if you are doing weights or running.

Mental health and emotional wellbeing

It is completely normal to feel shocked, sad or worried about your body after stoma surgery. Many people grieve for how their body worked before. Some feel self-conscious about leaks, wind or sex. These feelings usually soften as confidence grows, but if low mood, anxiety or sleep problems last more than a couple of weeks, or you have thoughts of harming yourself, please reach out for help straight away — talking helps, and effective support is available.

Prevention

You cannot 'prevent' an ileostomy, because it is an operation rather than an illness. What you can do is reduce the chance of some conditions that lead to one — for example, getting bowel cancer screening when invited, not smoking, and getting long-term bowel conditions treated and monitored. If surgery is planned, getting strong before it (good food, gentle exercise, stopping smoking) and learning about stoma care beforehand usually makes recovery smoother.

Vaccines

There is no vaccine for an ileostomy. Do keep up with routine vaccinations and with any your doctor or stoma team recommends, and mention your stoma when you attend, as some vaccines are given into the arm and this is usually no problem.

Screening programmes

If you have an inflammatory bowel condition or a family history of bowel cancer, your specialist may recommend regular bowel checks. Otherwise, take part in the bowel cancer screening programme you are offered in your country when invitations arrive — screening is one of the best ways to catch bowel problems early.

Complications

If left untreated

• Dehydration and low salt levels, from losing more fluid than usual through the stoma
• Sore or broken skin around the stoma, which can become infected
• Bowel blockage, causing cramps, vomiting and no output — this needs urgent medical help
• A stoma that sinks inward or sticks out (prolapse), which can make bag fitting very difficult
• A hernia near the stoma, if the muscles of the tummy wall weaken
• Low vitamin B12 or other vitamin shortages, especially after a large amount of bowel is removed
• Kidney stones and gallstones, which are more common in people with an ileostomy

Long-term outlook

Most people with an ileostomy live full, active lives — working, travelling, exercising, swimming and being close to others. The first few months are usually the hardest while you get used to the equipment and find what works for you, and it is normal to need several tries before the bag fits perfectly. With regular stoma nurse support, good skin care and attention to fluids, serious problems are uncommon. If your ileostomy might be reversed, your team will talk with you about timing and what to expect.

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