Enterocutaneous Fistula

Overview

A fistula (say: FIST-yoo-lah) is an abnormal tunnel or connection that forms between two body parts that should not be joined. An enterocutaneous fistula is a tunnel between the intestine (the bowel) and the skin. Because of this tunnel, some of the contents of the bowel — fluid, digestive juices, gas, and sometimes stool — leak out through a small opening on the skin, usually on the tummy (abdomen). It is not a disease in itself. It is a sign that something has gone wrong inside the body, most often after abdominal surgery or because of ongoing bowel inflammation. Doctors sometimes shorten the name to 'ECF' or simply 'fistula'.

It is uncommon. It is a recognised complication of surgery inside the abdomen, but most people who have abdominal surgery never develop one. Because it is uncommon, you will usually be looked after by a specialist team, often including surgeons, bowel specialists, and nutrition (diet) experts.

It can affect people of any age, but it is seen most often in adults who have had surgery on the bowel or other organs inside the abdomen. People with Crohn's disease (a long-term condition that causes inflammation of the bowel), people who have had radiotherapy to the abdomen or pelvis, people with certain cancers, and people who have had a serious abdominal injury are also at higher risk. It is rare in children, but it can happen, usually after bowel surgery or in babies treated for serious bowel problems after birth.

Symptoms

Common symptoms

• A small opening or hole on the skin of the tummy that leaks fluid, digestive juices, gas, or stool
• Sore, red, or broken skin around the opening, which can be painful and sting
• Wetness on the skin or dressings that need changing often
• Pain or tenderness in the abdomen
• Feeling sick or being sick
• Bloating or a swollen tummy
• Fever or feeling generally unwell, which can be a sign of infection
• Losing weight, or feeling weak and tired
• Signs of dehydration, such as dry mouth, dark urine, dizziness, or passing less urine than usual
• A wound or surgical scar that starts to leak or opens up

Symptoms in children

• Leaking from a wound, scar, or opening on the tummy, which may show up on the diaper or dressing
• Irritability, crying, or pulling at the tummy
• Poor feeding or refusing feeds
• Vomiting or a swollen tummy
• Fewer wet diapers than usual, or a sunken soft spot on the head in babies — signs of dehydration
• Fever, sleepiness, or being harder to wake
• Not gaining weight or losing weight
• Red, raw, or broken skin around the leaking area

Symptoms in older adults

• The same leaking opening and skin soreness, but skin may break down faster and be harder to heal
• Dehydration that can come on quickly and cause confusion or dizziness
• Increased risk of falls, especially if dehydrated or weak
• Fever that may be less obvious, or confusion that may be the main sign of infection
• Loss of appetite, weight loss, and muscle weakness
• Worsening of other long-term conditions, such as heart or kidney problems
• Skin damage from leakage, which needs careful and frequent checking

Causes

Main causes

• Complications of abdominal surgery, such as an injury to the bowel or a join in the bowel that does not heal properly (this is the most common cause)
• Crohn's disease or other long-term inflammatory bowel conditions
• An infection or collection of pus (abscess) inside the abdomen that breaks through to the skin
• Radiotherapy (radiation treatment) to the abdomen or pelvis, which can damage bowel tissue
• Injury or trauma to the abdomen
• Cancer of the bowel or nearby organs
• Diverticular disease (small pouches in the bowel wall that can become inflamed)
• A foreign body or a medical device inside the abdomen
• In some cases, no clear cause is found

Risk factors

• Recent surgery inside the abdomen, especially emergency surgery or surgery that was long or complicated
• Crohn's disease or other chronic bowel inflammation
• Poor nutrition or unintentional weight loss before or after surgery
• Diabetes
• Smoking
• Medicines that suppress the immune system or are used long-term as steroids (your doctor will discuss these with you)
• Previous radiotherapy to the abdomen or pelvis
• Infection or a collection of pus inside the abdomen after surgery
• Older age and frailty, which can slow healing
• Having more than one of these factors at the same time

When to see a doctor

See a doctor urgently if:

• You notice a new opening on your tummy that is leaking fluid, gas, or stool
• A surgical wound or scar starts to leak, open, or look infected
• You have a fever, spreading redness, or pus around a wound or opening
• You have severe or worsening tummy pain, vomiting, or a swollen tummy
• You have signs of dehydration, such as dizziness, dry mouth, dark urine, or passing very little urine
• You are losing weight quickly or cannot keep food or drink down
• The skin around a leaking area becomes raw, broken, or very painful

Book a routine appointment if:

• You have a fistula and want advice on skin care, dressings, or appliances
• You are struggling to manage the leak at home or at work
• You want to talk about diet, fluids, or nutrition
• You feel low, anxious, or isolated because of your condition
• You have questions about your treatment plan or upcoming tests
• You need help with practical supplies or support services

Diagnosis

Doctors usually recognise a fistula from your history and a physical examination — they can see the opening and the leakage, and they will feel your tummy and check your skin. The next steps are to find out exactly where the tunnel runs, which part of the bowel it connects to, and whether there is infection, a blockage, or a collection of pus. They will also check how much fluid you are losing, whether you are dehydrated or malnourished, and whether you have an infection. This usually means blood tests, imaging scans, and sometimes a camera test inside the bowel. You may be seen by a team that includes a surgeon, a bowel specialist, a nutrition specialist, and a specialist nurse.

Tests that may be done

• Blood tests to check for infection, kidney function, salt and mineral levels, and how well you are nourished
• A CT scan (a detailed X-ray scan) of the abdomen, often with a contrast dye, to show the tunnel, any abscess, and any blockage
• An MRI scan, which can give very clear pictures of the bowel and the tunnel without using X-rays
• A fistulogram — a small amount of contrast dye is gently put into the opening and X-ray pictures are taken to map the tunnel
• An ultrasound scan to look for collections of fluid or pus
• An endoscopy or colonoscopy — a thin flexible tube with a camera is used to look inside the bowel
• Tests on the fluid coming from the opening to measure how much is lost and to check for infection
• A nutritional assessment, including weight, food and fluid intake, and body strength

What to expect at your appointment

You may need several appointments and tests, and some results take a few days. You might be asked to keep a record of how much fluid leaks out and to note what you eat and drink. Some tests involve a special dye or a light sedative, and your team will explain how to prepare. It is normal to feel anxious during this time. Ask your team to explain anything you do not understand, and feel free to bring a friend or family member with you to appointments to help remember the information.

Treatment

Treatment aims to do four things: keep you safe and well hydrated, give your body good nutrition, protect the skin and control infection, and give the bowel a chance to rest and heal. Some fistulas close on their own with this supportive care, which can take several weeks. Others need a procedure or surgery. Your team will explain the plan for your situation and review it regularly.

Self-care at home

• Follow your team's advice on dressings, bags, and skin protection products — keeping the skin clean and dry helps prevent painful breakdown
• Empty and change any collection bag or dressing as instructed, and wash your hands before and after
• Keep track of how much fluid is leaking out, and tell your team if it changes suddenly
• Drink fluids as advised — your team may recommend specific amounts or types of drinks
• Eat a balanced diet, or follow the special eating plan your dietitian gives you
• Take gentle exercise as you are able, and rest when you need to
• Avoid lifting heavy things or straining if you have had recent surgery, until your team says it is safe
• Keep the skin around the opening protected with a barrier cream or product recommended by your nurse
• Ask for help with supplies, home support, or financial advice if you need it

Medical treatments

Treatment is usually planned by a specialist team. Common approaches include replacing the fluid and salts you are losing, sometimes through a drip into a vein; giving nutrition support, either as special liquid feeds or, if needed, through a vein; treating infection with medicines prescribed by your doctor; using dressings and collection devices to protect the skin and manage leakage; and sometimes using medicines to reduce bowel secretions, calm inflammation, or treat an underlying condition such as Crohn's disease. Some people need a tube placed to drain a collection of pus. Your team will choose the approach that suits your situation, and they will explain the benefits and risks of each option. Never start or stop any medicine without talking to your doctor or pharmacist.

When is surgery considered?

Surgery may be considered if the fistula does not close after a period of supportive care, if there is a blockage, if there is a large abscess or ongoing infection that cannot be controlled, or if the opening is causing major problems with nutrition or skin care. Surgeons usually prefer to wait until infection is controlled and you are as well-nourished and strong as possible, because this gives the best chance of a successful repair. The operation may involve removing the damaged section of bowel and rejoining it, or bringing the bowel out to the skin as a stoma (a surgically made opening on the tummy for waste). Your surgeon will discuss the options, risks, and likely recovery time with you.

Living with this condition

Living with a fistula usually means managing leakage, protecting your skin, and keeping an eye on your fluid and food intake. Many people use a special bag or dressing that sticks over the opening and collects the output, which can make daily life much easier and more predictable. It takes time to find the right products and routine for you. Your specialist nurse can help you adjust. Plan ahead when you go out — carry spare supplies, dressings, and a change of clothes in case you need them. Over time, many people find a new normal and regain confidence.

Lifestyle tips

• Keep a simple diary of leakage, food, fluids, and symptoms to help your team adjust your care
• Carry a small kit with spare dressings, bags, wipes, and a change of clothes when you go out
• Wear comfortable clothing that does not rub on the opening or the bag
• Ask your nurse about odour-control products and the best way to dispose of used supplies
• Wash your hands well and keep the area clean to reduce infection risk
• Avoid smoking, as it slows healing — ask your doctor or pharmacist for help to stop
• Take breaks and rest when you need to, and build activity back up gradually
• Tell your employer, school, or college if you need adjustments or extra breaks

Diet and exercise

Food and drink matter a lot with a fistula, because you are losing fluid and nutrients through the opening. Your dietitian will help you choose a plan that replaces what you are losing and gives you enough energy and protein to heal. Some people need softer, lower-fibre foods for a while; others need special liquid feeds. Drink regularly through the day, and follow any advice about salt and fluids. Gentle activity, such as short walks, helps circulation and mood, but avoid heavy lifting or straining until your team says it is safe. Ask your team before starting a new exercise routine.

Mental health and emotional wellbeing

A fistula can affect how you feel about your body, your confidence, and your relationships. It is very common to feel anxious, low, frustrated, or embarrassed, especially when leakage happens in public or when recovery is slow. These feelings are understandable, and help is available. Talking to a counsellor, psychologist, or specialist nurse can make a real difference. If you feel hopeless, overwhelmed, or have thoughts of harming yourself, please reach out for help right away — contact your local emergency number or a local crisis support line, or speak to your doctor or nurse. You deserve support, and asking for it is a sign of strength, not weakness.

Prevention

You cannot always prevent a fistula, and it is not your fault if one develops. Some fistulas are linked to things that can be reduced, such as good nutrition before and after surgery, careful surgical technique, controlling infection early, and stopping smoking. If you have Crohn's disease, working with your team to keep inflammation under control may lower the risk. If you are due to have abdominal surgery, tell your doctor about any weight loss, smoking, or long-term conditions so they can help you prepare as well as possible.

Screening programmes

There is no routine screening test for enterocutaneous fistula. If you have had abdominal surgery or radiotherapy, or you live with Crohn's disease, your team may watch for early warning signs such as a wound that starts to leak, fever, or increasing pain — so report these promptly.

Complications

If left untreated

• Dehydration and loss of body salts, which can make you feel very unwell and affect the heart, kidneys, and muscles
• Malnutrition and weight loss, which slow healing and weaken the body
• Skin breakdown and painful sores around the opening
• Infection of the wound, the tummy, or the blood (sepsis), which can be life-threatening if not treated quickly
• A collection of pus (abscess) inside the abdomen
• Bowel blockage or scarring
• Bleeding from the fistula or from the bowel
• Kidney problems caused by long-term fluid loss
• A longer hospital stay and a slower recovery
• Emotional strain, low mood, and isolation

Long-term outlook

The outlook varies from person to person, and many people do well. Some fistulas close on their own with supportive care, often over several weeks. Others need a procedure or surgery, and most people who have surgery improve. Recovery can take time, and progress is not always in a straight line — good nutrition, infection control, and a specialist team give the best chance of a good result. Keep talking to your team about your goals and worries, and remember that help and support are available at every stage.

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