Living with a urostomy, urine pouch or new bladder (2024)

After surgery to remove your bladder, you need another way to collectand passyour urine. Doctors call this urinary diversion. There are different types of urinary diversion.

You mighthave:

  • a bag outside your body to collect urine (urostomy or ileal conduit)
  • an internal pouch to collect urine (continent urinary diversion)
  • a new bladder (bladder reconstruction or neobladder)
  • a pouch made from your back passage (recto sigmoid pouch)
  • Read about the different types of bladder cancer surgery

How you pass urine depends on which surgery you have. Your nurse will support you after your operation. They help you learn and adapt to a new way of passing urine.

  • How to look after your urostomy, urine pouch or new bladder

After the operation, you have to adjust to big changes to your body. This can affect your day to day life. It can take time to get used to these changes.

Changes to your bowel movements

You may notice that your bowel movements change after surgery to remove your bladder.This is because the surgeon removes part of your bowel to make the urinary diversion. So your bowel is shorter than before.

Your bowel movements may become looser. This can improve over time but sometimes it doesn’t. You might need medicines to help control your bowel movements, although this is rare.

Getting used to the changes in your body

It can take some time for you to adjust to the changes in your body. It can help to have support from family and friends. If you find this difficult, you might need some help from other people.

You might worry about how body changes will affect:

  • your job
  • your relationships
  • your sex life
  • sports and hobbies

With time you will hopefully find that there is little that you can't do, that you could do before your surgery. You will become more confident about living with these body changes.Your specialist nurse will be able to help you overcome some of your fear and build up your confidence.

  • Read more about coping with bladder cancer

Your job

The effect on your working life will depend on what job you do, and also what type of operation you have.After a urinary diversion, you willneed access to a toilet at work.

After some recovery time, the surgery should not affect your working life, unless your job involves heavy types of manual work. For example, digging, or working in a warehouse or construction. Ask your specialist nurse for advice if you are unsure about this.

If you have a new bladder (neobadder)

You might find, for example, that your new bladder leaks if you're lifting something really heavy. You find out by trial and error whether any activities cause problems with leaking.

Try emptying your new bladder more often. If it's leaking slightly when you're not doing anything too strenuous, pelvic floor exercises can help to stop this. Talkto your doctor or specialist nurse, they can also help you find ways to stop any leaking.

Your relationships

You will probably worry about how the surgery will affect your relationships, whether with a partner or with friends.For a few months, your body will be recovering from having major surgery. So you may not have the energy to meet people or go to places like you did before.

You might have practical worries about the urostomy bag leaking or being noticeable. Or about your new bladder leaking. This can make you feel embarrassed and anxious. So you may not want to be far from your home or toilets.

You might find it helpful if you can talk openly to friends and family about your surgery. Most people understand and are very willing to help make things easier if they can.

If you have a urostomy

Stoma appliances are very well designed. They're not easily seen through your clothes and they shouldn'tleak. Talk to your stoma nurse if you have problems with your bag. A different type of bag may suit you better.

If you have a new bladder (neobladder)

It will take time for you and your body to get used to your new bladder. It’s a good idea at the beginning to empty your new bladder more often. Reducing the amount you drink in the evening can help reduce accidents overnight.

Your sex life

After bladder surgery you might have some physical changes that can affect your sex life.

  • See how bladder cancer and its treatment can affect your sex life

Sports and social life

Your surgery shouldn't stop you enjoying your favourite pastimes.

You can exercise and swim. If you have a urostomy, you can wear a smaller urostomy bag while you swim if you prefer. Or you can wear a waterproof dressing. Your stoma nurse can tell you about this.

There is no reason why you shouldn't drink alcohol. But bear in mind that the more liquid you drink, the more urine you will pass. So you might have to get up more frequently in the night.

Toget a good night's sleepit can help to avoid drinking large amounts of any liquid later on in the evening. If you have a urostomy, you can also attach a night drainage bag to your day bag so that it holds more urine.

Radar key and just can't wait card

Many people worry about having access to a toilet when they’re out. There are special keys called radar key’s you can get that gives you access to thousands of toilets in the UK. It also tells you where they are.

Also, you can get a just can't wait card, this gives you peace of mind and access toilets in a rush.

Speak to your specialist nurse about getting a radar key or just can't wait card.

Cancer Research UK nurses

For support and information, you can call the Cancer Research UK information nurses. They can give advice about who can help you and what kind of support is available.Freephone: 0808 800 4040 - Monday to Friday, 9am to 5pm.

Living with a urostomy, urine pouch or new bladder (2024)

FAQs

Living with a urostomy, urine pouch or new bladder? ›

It's important to use a night drainage system when you sleep to keep your pouch from getting too full. If it's too full, it can leak, or urine can flow back into your stoma and cause an infection. Using a night drainage system can also help you avoid having to get up at night to empty your pouch.

Which is better ileal conduit or neobladder? ›

Urinary function is worse in neobladder patients compared to ileal conduit patients. Sexual function is better in neobladder patients but causes much more bother. In retrospect, none of the patients regret their choice of urinary diversion.

What are the disadvantages of neobladder? ›

Besides incontinence, some patients experience poor neobladder emptying or “hypercontinence” as well. Certain complications of neobladders such as electrolyte disorders, acidosis, urinary tract infections and pouch calculi formation are more pronounced in such patients.

What is the life expectancy of someone with a urostomy bag? ›

People with ileal conduit and other types of urostomy have the same life expectancy as people who have not undergone these procedures, as long as there are no serious complications. With proper care and lifestyle adjustments, people with a urostomy can lead typical lives.

How do you live with a urostomy bag? ›

It's a good idea to empty your pouch when it's about 1/3 to 1/2 full. During the day most people need to empty the pouch about as often as they used the bathroom before they had urostomy surgery or other bladder problems – for many people, this might mean every 2 to 4 hours, or more often if you drink a lot of fluids.

What is a major disadvantage of an ileal conduit? ›

In patients with ileal conduits, the rate of renal impairment is accelerated by the increased risk of developing repeated urinary tract infections, ureteral obstruction due to stenosis or urolithiasis, and persistent urinary reflux.

What is the life expectancy of someone with an ileal conduit? ›

Does an ileal conduit affect life expectancy? There is no evidence that having an ileal conduit reduces life expectancy. Removing the bladder is an important part of treating bladder cancer. The 5-year survival rate for bladder cancer is 96% if cancer has not spread beyond the bladder.

How many years can you live with a neobladder? ›

Results: The overall survival rate was 65.5%, 49.8% and 28.3% at 5, 10 and 20 years, respectively. The overall long-term complication rate was 40.8% with 3 neobladder related deaths.

What are the long term complications of neobladder? ›

Typical early postoperative complications include persistent urine leak, pyelonephritis, and bowel complications such as ileus and small bowel obstruction. Late complications include ureteroenteric and neovesical-urethral anastomotic stricture, urinary fistula, urolithiasis and voiding dysfunction, and incontinence.

How do you pee with a neobladder? ›

You will use the muscles in your abdomen to empty your neobladder. This is different from how you empty your natural bladder. Sometimes, you may need to put a catheter through your urethra into your neobladder to completely empty it.

Can you live a long life with a urostomy? ›

Does A Urostomy Decrease Life Expectancy? The answer is no. Urostomy surgery is a way to help people live longer and more fulfilled lives. So if you've been told you need a urostomy, as much as you might not think so right now, you'll probably be glad you had it.

Does Adele have a colostomy bag? ›

Olympian Greg Rutherford was also due to take part in the final but had to pull out at the last minute due to an injury. Adele underwent colostomy surgery following her cancer diagnosis in 2021 and has since been living with a stoma bag, which she has lovingly nicknamed 'Audrey'.

Is having a urostomy bag a disability? ›

Having an ostomy is considered a disability under the Americans with Disabilities Act (ADA). A colostomy is a prosthetic device used to treat a physical impairment of a core body function, so you're protected by law against discrimination in the workplace or elsewhere.

What is the problem with urostomy? ›

Urostomy complications include stomal retraction, stenosis or obstruction, herniation, prolapse, and peristomal skin irritation [28, 33].

How hard is it to live with an ostomy bag? ›

You should be able to do the activities of your daily life. People with ostomies go to work, play sports, and engage in sexual activity. Reasonable activity will not hurt you or your stoma. Sweating may cause the tape that holds your pouch in place to loosen.

What foods should you avoid with a urostomy? ›

Having a urostomy means that you don't have any particular food restrictions, so you can enjoy a normal diet. Some things worth bearing in mind, though, include: Fish, onions, garlic and asparagus can make your urine smelly. After eating beetroot, your urine (and sometimes your poo) will often be pink.

What are the complications of neobladder vs ileal conduit? ›

Ileal conduit (IC) and orthotopic neobladder (ONB) are the most commonly practiced UD [9]. While ONB maxi- mally preserves body image, IC represents the fastest, most commonly performed, and historically least complication- prone UD [8,9].

What are the pros and cons of the ileal conduit? ›

The ileal conduit urinary diversion has the advantages of having a less technically complicated procedure and shorter operative duration [3], while this has some disadvantages such as stomal stenosis, parastomal hernia, urinary incontinence, and negative body image due to external ostomy [2]. ... ...

How many years does a neobladder last? ›

The complication rate was calculated using the Kaplan-Meier method. Results: The overall survival rate was 65.5%, 49.8% and 28.3% at 5, 10 and 20 years, respectively.

What is the best bladder surgery? ›

Sling surgery is the most common surgery doctors use to treat urinary stress incontinence. That's when certain movements or actions, like coughing, sneezing, or lifting, put pressure on your bladder and make you pee a little. The surgeon creates a “sling” out of mesh or human tissue.

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