Preparing for a urostomy

Samantha Sherratt, Transformation Director at the Urostomy Association.

Being told that you’ve got cancer and need to have your bladder removed can be a shock, particularly if you’re recommended for prompt surgery for a urinary diversion, such as a urostomy. The best way to overcome any fears and to prepare for the new you is to ask lots of questions from those in the know.  

There are lots of sources of support available

There are lots of sources of support available​

Fight Bladder Cancer and The Urostomy Association (UA) are collaborating to help improve access to early information and support for new urostomates. The charity has been talking to urostomates, face-to-face, through its helpline and its private Facebook group, to compile these ten frequently asked questions. 

You will, of course, have your own queries, so at the end of this blog you can find sources of support, advice and information.

 

1. How is the site of my stoma chosen?

Take time to discuss with your stoma nurse where your stoma might be sited. They will mark the preferred site that both you and they are happy with. 

You will want to be confident that your urostomy bag will stay in place whether you are sitting, standing or moving about. The stoma is always located within the area of an abdominal muscle called the rectus, and it may be placed on the right of left of the belly button (usually to the right). If you have scar tissue or a hernia in that area, this may need to be taken into account when planning your stoma positioning. 

It may also be possible to tailor your stoma site to suit your needs and lifestyle; for example you may prefer a particular side of your body so that it doesn’t interfere with sports you play. The site chosen before surgery gives a good guide to the surgeon, but they may need to make adjustments during the surgery if necessary.

 

2. What will it feel like to wear a urostomy bag?

It is hard to imagine what wearing a urostomy bag will feel like, so ask for a few sample bags before your operation. You can put water in one and stick it on your body in the position that the actual bag will be after your operation. You can feel what it's like next to your skin and how it moves, and check that it doesn’t prevent you from doing day-to-day activities. 

Living with a Stoma Webinar Recording: Fight Bladder Cancer

3. How long will I need to recuperate after my operation?

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.

In the days immediately after surgery and while you’re in hospital, your stoma nurse will support you as you adjust. You will want to discuss issues such as how often to change your bag, night time arrangements, cleaning your bags and looking after your skin. 

Get lots of practice changing your bag while you’re in hospital, then you’ll feel more confident once you’re home. You will probably be allowed home after a week to ten days, but don’t worry if you’re in hospital a little longer. 

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.

 

4. What urostomy equipment will I need?

You will need a supply of urostomy bags, which your stoma nurse will advise you on. They can help you to set up a regular delivery service to keep your supplies topped up. Your nurse is likely to recommend a particular supplier, but if you find that their bags don’t suit you, then look at alternative suppliers until you find the right one for you.

You will need night bags to wear while you sleep, and a mattress protector while you get used to your night time routine. You may also need adhesive remover.

 

5. Will I need special clothing?

Having a urostomy 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. 

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. Take a look at the Urostomy Association’s ‘Directory of Suppliers’ for examples.

 

6. Will I have to follow a restricted diet?

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. 

There aren’t any food restrictions that you need to follow just because you have a urostomy. So do enjoy a normal, healthy diet. Different foods like beetroot and asparagus can affect the colour and smell of your urine. Eating foods which are rich in Vitamin C can help make your wee acidic and prevent infections. Drinking cranberry juice or taking cranberry pills or powders can help avoid urinary tract infections (UTIs), but don’t drink cranberry or grapefruit juice if you’re taking warfarin.

Urostomy Association Cambridge branch members

The Urostomy Association offers one-to-one support including face-to-face meetings, helpline and ‘ask the expert’ webinars

7. How long before I can drive again?

After your operation, ask your consultant when it is safe for you to get back to driving. You must be able to do an emergency stop and reverse, and of course you must be alert for the whole time you are driving.

When you get back to driving again, think about planning your journeys, particularly if you’re taking a long trip. You might want to take a night drainage bag with you, in case you get caught up in heavy traffic. You might also want a special attachment to make your seatbelt more comfortable. These release tension around your pouch, but tighten automatically when necessary.

 

8. Will have a urinary diversion affect my sex life?

Men and women can encounter sexual problems after urinary diversion surgery, and everyone’s experiences vary. You may feel differently about your body, which can affect your self-esteem, and you might have concerns about fertility, sex drive, erectile disfunction or intercourse, all of which can be difficult to talk to loved ones about. 

Speak to your stoma nurse before your surgery so you’re more prepared.

 

9. How am I likely to feel emotionally?

Getting through those first few weeks and months after surgery can be tough, and it’s natural to mourn the way your body used to be.

Be kind to yourself. Expect to have good days and bad days, both emotionally and physically, in the weeks following surgery. Listen to how your body is recovering and take time to get to know it again. Take the journey at your own speed.

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.
 

10. What support is available for urostomates?

Talk to someone you trust about any fears and anxiety. Just sharing your worries can help reduce your stress. Your consultant, GP and stoma care nurse can provide guidance to help you recover from surgery and keep well. Your urostomy bag supplier may also have a team of stoma nurses who can provide ongoing support.

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 can provide over the telephone, and sometimes face-to-face too. Do contact us if you would like us to link you up with a volunteer in your local area. 

Fight Bladder Cancer has a useful leaflet ‘Living with a stoma’. There is also a growing library of resources on our own website – urostomyassociation.org.uk/resources - to support you on each stage of your journey.

 

urostomyassociation.org.uk

01223 910854

 

Blog written by Samantha Sherratt, Transformation Director at the Urostomy Association.

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