17777 Ureterostomy

Overview

A ureterostomy is an operation that creates a new way for urine to leave your body. Your kidneys make urine and send it down two thin tubes called ureters. Normally the ureters carry urine to your bladder, where it is stored until you go to the toilet. In a ureterostomy, a surgeon brings one or both ureters out through a small opening in your belly. That opening is called a stoma. Urine then drains straight into a small pouch or bag that sticks over the stoma, and you empty the bag when it is full. A ureterostomy is one type of urostomy, which is the general word for a stoma that carries urine.

A ureterostomy is not common. It is done much less often than other types of urostomy, such as an ileal conduit, where a piece of bowel is used to carry urine to the skin. Your surgical team will talk you through the options that suit your situation.

It can be needed at any age. It is most often done in adults who have had their bladder removed because of cancer, or whose ureters are blocked or damaged. Some children are born with conditions that need this kind of surgery, sometimes as a first step before a bigger repair later.

Symptoms

Common symptoms

• Before surgery, possible reasons include: blood in the urine, pain when passing urine, or repeated urine infections that turn out to need investigation.
• Being unable to pass urine, or urine flowing only weakly, because of a blockage somewhere in the urinary tract.
• Pain in your side or back, which can be a sign of a blocked or swollen kidney.
• After surgery, it is normal to see urine draining steadily into the pouch instead of from your usual opening.
• The new stoma usually looks pink or red and moist, a little like the inside of your mouth. It may be swollen at first and shrink over a few weeks.
• Some tenderness or swelling around the stoma is common in the first days after the operation.

Causes

Main causes

• Bladder cancer that needs the bladder removed.
• Damage to the ureters from surgery, injury or radiation treatment in the pelvis.
• A blockage in the ureters that cannot be fixed in another way.
• Birth defects affecting the bladder or ureters.
• Nerve or bladder problems, such as after a spinal cord injury, that stop the bladder working properly.
• Serious long-term bladder problems where other treatments have not helped.

Risk factors

• Smoking, which is the biggest risk factor for bladder cancer.
• Past radiation treatment to the pelvis.
• Long-term bladder inflammation or long-term use of a urinary catheter.
• Some inherited conditions that affect the urinary tract.
• Being older, as urinary cancers and bladder problems become more common with age.

When to see a doctor

See a doctor urgently if:

• Fever, chills or pain in your side or back that comes on quickly.
• The stoma changes colour, becomes very swollen, or stops passing urine.
• Skin around the stoma breaks down or a rash spreads and does not improve with your usual products.
• Signs of dehydration such as dizziness, a dry mouth and very dark urine.
• Heavy or repeated bleeding from the stoma.

Book a routine appointment if:

• You need help choosing bags or products that fit better.
• Small leaks or skin irritation keep coming back.
• You have questions about diet, travel, work, exercise or intimacy.
• You feel low, anxious or isolated, or you are finding it hard to adjust.
• You are planning a trip or a return to work and want practical advice.

Diagnosis

The need for a ureterostomy is worked out by looking at your whole urinary system. Your doctor will ask about your symptoms and your medical history, examine you and arrange tests. If surgery is planned, you will also have a pre-operative assessment to check your general health, and you will meet a stoma nurse before the operation so you are prepared.

Tests that may be done

• Blood tests to check how well your kidneys are working.
• Urine tests to look for infection or blood.
• Ultrasound scan of the kidneys and bladder.
• CT or MRI scan of the urinary tract.
• Cystoscopy, where a thin camera is passed into the bladder so the doctor can look inside.
• Kidney function scans to see how well each kidney drains.
• A biopsy, if cancer is suspected.

What to expect at your appointment

Before surgery, your stoma nurse will show you samples of bags and mark a good, flat spot on your belly for the stoma, usually away from your waistband and any skin creases. You will be asked not to eat for a set time before the operation. Afterwards you will wake up with the stoma and bag already in place, and your nurse will guide you through the first bag changes step by step until you feel confident doing it yourself.

Treatment

Treatment means the operation itself, plus learning to care for your stoma and bag, and regular follow-up. Your team usually includes a surgeon, a stoma nurse, and sometimes a kidney specialist and a dietitian. The aim is to let urine drain safely, protect your kidneys and help you get back to normal life.

Self-care at home

• Empty the bag when it is about half full, so it stays light and does not pull on your skin.
• Change the bag and skin seal on a regular schedule, or sooner if it leaks.
• Clean gently around the stoma with warm water and a mild soap, then pat dry. The stoma has no nerve endings, so it does not feel pain when touched.
• Check the stoma and the surrounding skin each time you change the bag.
• Drink plenty of fluids through the day, and carry water with you.
• Keep a small travel kit with spare bags, wipes and a mirror.
• Avoid heavy lifting and strenuous exercise until your surgeon says it is safe.
• Build activity back up slowly, and ask your nurse before trying swimming or contact sports.

Medical treatments

There is no medicine that can replace this operation. Care involves the surgery itself, teaching and support from your stoma nurse, protective skin products that help the bag seal well, and treatment of any infections or skin problems if they appear. Your team will also keep an eye on your kidney function with regular blood tests, and manage any other conditions you have. If your kidneys are not working well, your doctors will discuss the full range of options with you.

When is surgery considered?

The operation is done under a general anaesthetic, so you will be asleep. It usually takes a few hours, and most people stay in hospital for several days. Your surgeon will tell you whether your stoma is likely to be temporary or permanent, and what the plan is for follow-up. Some people need more than one operation over time, especially children and people having reconstructive surgery.

Living with this condition

Once you are home, life settles into a routine of emptying the bag several times a day and changing it every few days. Most bags are designed to be discreet under clothing, and they do not smell when they are sealed properly. Many people empty and change on a schedule that fits around meals, work and sleep rather than waiting for the bag to feel full.

Lifestyle tips

• Keep spare supplies at home, at work and in the car.
• Tell a trusted friend or family member what to do if you ever need help.
• Travel with supplies in your hand luggage, and carry a letter from your team if you are flying.
• Swimming is usually fine once you have healed, with a fresh bag and a good seal.
• Choose loose, comfortable clothing, at least at first.
• Join a stoma support group, in person or online, to swap practical tips.
• Keep your follow-up appointments, even when you feel well.

Diet and exercise

Most people can eat a normal, balanced diet. Some foods may make urine or wind smell stronger, and you will quickly learn which ones affect you. Eating fibre and drinking enough fluid helps keep your bowels regular, which matters because a full bowel can press on the stoma. Gentle exercise such as walking helps recovery. Build up to more vigorous activity slowly, and ask your surgeon or stoma nurse before heavy lifting, core exercises or contact sports, because of the small risk of a hernia near the stoma.

Mental health and emotional wellbeing

It is very common to feel shocked, sad, anxious or self-conscious after this surgery. Some people worry about how their body looks, about leaks in public, or about intimacy. These feelings usually ease as confidence grows, but they are real and worth talking about. Tell your team how you are feeling, because support is available and it helps.

Prevention

You cannot directly prevent the need for a ureterostomy, because it is a treatment rather than an illness. But you can lower the risk of some causes. Not smoking is the single most helpful step, since smoking is the biggest risk factor for bladder cancer. Getting unusual urinary symptoms checked early, and treating urine infections promptly, also helps protect your kidneys and bladder.

Screening programmes

There is no routine screening programme for the conditions that lead to a ureterostomy. If you have had bladder cancer or kidney problems before, your team will arrange regular check-ups suited to you.

Complications

If left untreated

• If the underlying blockage or disease is left untreated, urine can back up and damage the kidneys.
• Repeated kidney infections can make you seriously unwell and scar the kidneys over time.
• Without good stoma care, the skin around the stoma can become sore, broken or infected.
• The stoma can narrow or become harder to fit with a bag, which needs help from your nurse.
• Some people develop dehydration, kidney stones or a hernia near the stoma, all of which can be managed once recognised.

Long-term outlook

Most people who have a ureterostomy go on to live full, active lives. Your kidneys are protected by letting urine drain freely, and with good stoma care and regular check-ups, serious problems are uncommon. The first few months are a learning curve, and it is normal to need help along the way. With support from your stoma nurse and your medical team, confidence usually grows quickly.

Find support

External links open third-party websites. Ruqelo Health is not responsible for external content. Listing an organisation does not imply endorsement.