Contact us

Get in Touch

01223 910854
More Info
working

Frequently Asked Questions

What is a urostomy?

A urostomy is an opening (stoma) on your abdomen made during surgery. It lets urine drain out of the body from the kidneys if your bladder has been removed. See our ‘what is a urostomy?’ leaflet for more detail.

Why might someone need a urostomy?

The procedure is typically necessary when there is a problem with the normal urinary system and urine can’t be released through the usual route (through the urethra). Common reasons why someone might need a urostomy include bladder cancer; conditions affecting the nerves controlling the bladder, such as multiple sclerosis or spinal cord injuries; congenital abnormalities; chronic infections or fistulas, and severe interstitial cystitis.

How is a urostomy performed?

The most common type of urostomy is an ileal conduit. This is where the surgeon uses a piece of the small intestine to form a stoma. This acts as a passage between the ureters, which take urine away from the kidneys and outside of the body. The ureters are connected to the newly created passage. Urine flows through the passage to the stoma out of the body into a urostomy bag. The operation can be either open surgery or by robotic surgery.

How long does it take to recover after urostomy surgery?

Recovery time can vary from person to person and depends on several factors, including your overall health, the reason for your urostomy, the type of operation (open or robotic), and any complications that may arise. The good news is that most people find they can resume normal activities within a few weeks to a couple of months after their operation.

What changes will I need to make in my daily life after a urostomy?

Life after surgery may feel challenging initially, but with time and support you will become more confident about living with a urostomy. Your local stoma nurse, or nurse specialist, will give you advice about caring for your stoma once you return home. They can also help arrange supplies of your equipment. Talk to your stoma nurse if you experience any problems.
Caring for your stoma: As there are no nerve endings, the stoma itself should not cause any pain or discomfort. However, your stoma will require regular care to keep it clean and healthy. This involves changing your urostomy bag and cleaning the stoma area. Learning how to properly apply and change the bag is an important aspect of post-urostomy life. During your hospital stay you will be shown how to care for your stoma and surrounding skin.
Diet and hydration: Great news – having a urostomy doesn’t mean giving up the food and drink you enjoy. What’s really important is staying well hydrated. As well as being vital for kidney health and helping to prevent urinary tract infections (UTIs), drinking enough water – six to eight glasses a day – can also prevent your urine from becoming too concentrated and causing skin irritation or discomfort around your stoma. Different foods like beetroot can affect the colour of your urine and food like asparagus can affect the smell.
Physical activity: Your stoma shouldn’t be a barrier to you being active. From easily handling everyday chores to getting back into exercise, there are very few restrictions. However, it takes time to heal after stoma surgery, and your consultant or stoma nurse will be able to advise you about returning to your normal activities.
Clothing: Having a stoma doesn’t mean you have to change your personal style and invest in a whole new wardrobe. You may feel like wearing stretchy clothes straight after surgery, but once you’ve fully healed, there’s nothing to stop you from wearing any clothes that make you look and feel good. Immediately prior to your surgery your stoma nurse should site where the stoma is best placed to help prevent any issues with clothing around your waist post operation.
However, if you are looking for items designed for ostomates, there are brands providing all types of clothing, from swimwear and underwear to casual clothing. See our ‘suppliers’ fact sheet for examples.
Sex and intimacy: Recovering from stoma surgery may temporarily put your sex life on hold, but there’s no reason you can’t resume intimacy when the time feels right. Try to have honest and open talks with your partner about expectations for resuming your sex life. You might feel anxious about how your partner will react to your body. Talking to them can help reduce that worry. You may like to see our sexual health leaflets.
Travel: From organising a day out to holidaying abroad, travelling may require additional planning, especially in terms of carrying extra supplies and understanding how to manage your urostomy in different environments. Our ‘travelling with confidence’ leaflet contains more useful information.

What about emotional recovery?

It’s natural to mourn the way your body used to be, and getting through those first few weeks and months after surgery can be tough. Remember that all the emotions you are experiencing are a normal and appropriate response to what has happened, and take heart from knowing you can overcome challenges, one step at a time, with support along the way.
Talk to someone you trust about your fears and anxiety. Just sharing your worries can help reduce your stress. Speak to your stoma care nurse about any appliance or stoma care concerns. They can offer solutions and provide reassurance. We can also put you in touch with a volunteer ‘buddy’ who has personal experience of a urinary diversion. You may find it helpful to talk through with them any questions you may have.

How do I talk to people about my urostomy?

It’s natural to worry about how you will tell people you have a stoma and how they might react. Remember though, that you are in control of who knows about your urostomy. There’s no pressure at all to let anybody know unless you want to.
It’s often easiest to start by only telling close friends and family. You might not even want to tell anybody else and that’s absolutely fine, too. If you have been ill for a long time, you could say that you have had an operation and are now feeling much better, which is all the information they need.
If you have young children in your life, you’ll probably find they are completely accepting of the news regarding your stoma and will not see it as anything to be concerned about. Our illustrated book ‘Bags, bags, bags’ is a useful conversation-starter to help explain your urostomy to them in language they’ll understand.

When will I be able to return to work?

It will take a while for your strength and stamina to return to normal. Listen to what your body is telling you and discuss your plan to return to work with your consultant or stoma care nurse. Speak to your employer about your urostomy and how it affects you. They can help you with a phased return to your job, starting off slowly and gradually adding more hours as you feel able.

Are there alternatives to a urostomy?

There are different types of surgery to create urinary diversions; the most suitable option for you will depend on your individual medical circumstances.
Bladder reconstruction: this is when the surgeon constructs a new bladder (known as a neobladder) to replace your bladder after it has been removed. They will use a piece of your bowel to do this. After surgery you will either pass urine directly or you may need to use a tube (known as a catheter).
Continent urinary diversion, eg Mitrofanoff: this involves the surgeon creating an opening on the surface of your body (a stoma) and inserting a tube (catheter) either into your natural bladder or a bladder constructed from your bowel. A new catheter must be used regularly to drain the urine, but there is no need to wear a bag on the outside of your body.

What support is available for people with urostomies?

Your consultant, GP and stoma care nurse can provide guidance to help you recover from surgery and keep well.
Please remember that the Urostomy Association is here for you, your family and your carers, too. Our trained one-to-one support volunteers all live with a urinary diversion so understand from their own experience what you might be going through. They provide support in person, over the telephone and online. If you would like us to link you up with a volunteer in your local area, contact the Urostomy Association.