It might feel like it, but you are not alone

Your nephrostomy catheter will be inserted by an Interventional Radiologist – a doctor who specialises in image-guided procedures.

Your Radiologist will use fluoroscopy (real time x-rays), a CT scan, or ultrasound to help place the catheter.

The procedure usually takes less than 1 hour. Your interventional radiologist will explain the procedure to you and give you time to ask any questions before you sign a consent form.

• Ask about any medication you take – you may need to stop taking some before the procedure – but do not stop taking any medication until you have spoken to your Consultant/Doctor
• Ask about what preparations will need to be made for support at home after your procedure (EG: Visits from the district nurse, )
• Ask what preparations you need to make before your procedure (EG: instructions for eating the day before your catheter placement, what you will need to bring to the hospital with you)

You will need a responsible carer (friend, relative or care professional) to take you home and be with you following your operation. They need to get you home safely and stay with you for around 24 hours to keep an eye on you to be able to report any concerns to your Healthcare Professional if necessary.

• At first a nurse will visit you at home to help you change your bag and show you how to do it.
• Drainage bags must be changed every 5 to 7 days (You must not wait longer than this or re-use any old bags).
• If you are using the Nexus single or bilateral bags make sure you read the instructions and show them to whoever changes your drainage bags as they may be different to ones they have seen previously. There are also helpful animated tutorials here.
• Nexus bags are simple and easy to change and can be worn on your thigh or on your waist or hip on a belt.  The Nexus belt pack product code NXBelt has everything you need to secure the drainage bag to your body.
• Always ensure you follow good hygiene before and after your bag change. Ideally the bag should be changed as part of a sterile procedure, your specialist healthcare professional should explain what is involved.  Wash your hands with soap and warm water for 20 seconds or more. If this isn’t possible for any reason use a liberal amount of sanitising gel or spray on your hands.

The National Institute for Health and Care Excellence (NICE) guidelines state urine drainage bags should be changed every 5 to 7 days. Leaving it longer than this may put you at risk of infection. Never re-use an old drainage bag.  Ideally your dressing should be changed at the same time.  Keep a paper or electronic record of when the bag and dressing was last changed.

• You should check your catheter daily. If you have a care partner you can ask them to look at it for you, perhaps even take a photograph of it on your phone if the facility is availabe. If you prefer to do this yourself, using a handheld and full-length mirror together will make it easier to see your back.
• Check the dressing to make sure that it is secure. If the dressing is wet, soiled or started to pull away from the skin, it needs to be changed.
• When you are changing the dressing examine your skin around the catheter to see that it is in good condition. There should be no redness, areas of broken skin, or rash. Urine should not leak around the catheter. If you notice anything unusual, there is inflammation around the site, or you feel unwell (particularly if you have a higher than normal temperature) contact your healthcare professional or ring 111 (in the UK) or your local medical helpline) for advice.
• Look at the drainage bag. Urine should be flowing freely into the bag. It should not have changed colour or consistency. There should not be a large, unexpected decrease in the amount of urine in the bag. If you have any concerns, contact your healthcare professional or ring 111 (in the UK) or your local medical helpline) for advice.
• Check the catheter and the drainage bag for any kinks in the tubing.
• If you are at all worried about your catheter, the urine output or the skin around the catheter or you feel unwell contact your healthcare professional or ring 111 (in the UK) or your local medical helpline for advice.

It is important that the nephrostomy catheter where it exits your body is secure and kept dry.  This area will have a dressing on it chosen by your specialist healthcare professional.  There are various fixation devices available to secure your catheter to your body and protect it from being snagged or pulled.  Usually, the complete area will be protected by a waterproof dressing (Tegaderm or similar), a breathable film ideally transparent so the skin can be monitored that lets oxygen in, keeps moisture vapour out and flexes with skin for greater patient comfort.  Additional fixation devices that are also dressings, that may be available from the hospital that inserted the nephrostomy but not available on prescription, such as Driplock, Drainfix and Drainguard, may be available from your hospital team.

At night you can connect your drainage bag/s to a larger capacity night bag using a short connecting  tube. Speak to your Healthcare Professional about obtaining 2-litre night bags and make sure they are prescribed for you with your Nexus system (Bags with a greater capacity than 2-Liter are available if needed for longer stays in bed or extended travel). If you are using the Nexus system, the connector tube comes ready attached to the outlet tap of the bag so you can connect the two. Remember to leave the tap on your drainage bag open after you have connected it to the night bag to allow it to drain freely overnight.

You will need to keep your dressing dry, so a bath is not recommended. A handheld shower can be useful for directing water away from the dressing. Ask your Healthcare Professional what they advise for your individual needs and if they can recommend a waterproof dressing for you.

Once you have recovered from your initial surgery, if you can sit comfortably in the driver’s seat and fully control the vehicle there is no reason why you cannot drive. Consider if manoeuvring the vehicle in various situations such as looking over your shoulder when overtaking, performing a 3-point turn or an emergency stop cause you problems before you get behind the wheel? It is recommended you notify the Vehicle Licencing Authority in your Country of your medical condition.

• You can go to work and do some exercise with your catheter in place but do avoid movements that involve stretching from side to side or continual bending. These could dislodge the catheter.
• Do not swim, take a bath, or submerge your catheter in water before taking advice specific to your needs from your specialist consultant/doctor first.
• There is no reason why you shouldn’t have a planned holiday with many activities just ensure a specialist that knows your situation advises you what is best for your specific circumstances.

Unless you have a very physically demanding job returning to work should not present any problems as long as you have successfully recovered from your medical procedure before going back to work. Discuss with your healthcare professional how long to wait before returning to work and what you should and shouldn’t be doing. Speak to your HR department at work so they understand how you can best be supported for your return to work.

There are no restrictions on intimacy and sexual intercourse once you have recovered from your surgery and you are feeling well. Make sure you drain the bags before and if you are worried about dislodging the tube(s) ensure they are secured with catheter retaining device like a silicone adhesive strip and ensure the Nexus bag(s) are secured out of the way.

If you find there is no urine in your drainage bag when you would usually expect there to be it could be the tube is blocked.  If nothing has drained for 8 or more hours contact the healthcare team responsible for your care as the tube may need flushing. If it is ‘out of hours’ call to discuss the situation with the emergency healthcare team in your area, this may be a hospital helpline, 111 (in the UK) or other medical advice line.  It is important the professional that flushes the tube has been trained for the task. 

• It is very important to drink plenty of water to ensure you are properly hydrated. Drinking plenty of water helps maintain healthy kidneys and in preventing urinary tract infections (UTI’s)  Water is a healthy and cheap choice for quenching your thirst at any time. It has no calories and contains no sugars that can damage teeth.
• If you do not like the taste of plain water, try sparkling water, or add a slice of lemon or lime. You could also add some ‘no-added-sugar’ squash or fruit juice for flavour.
• If you prefer a hot drink, heat the water and infuse a tea bag, some coffee or a slice of lemon.
• Plain tea, fruit/herbal teas (without added sugar) can also be a healthy way to increase your fluid intake.
• More information can be found on the NHS website: https://www.nhs.uk/live-well/eat-well/food-guidelines-and-food-labels/water-drinks-nutrition/
• Do look at how to detect hydration/dehydration by the colour of your urine and other useful information on the topic from https://www.nhsinform.scot/campaigns/hydration

Good hydration prevents:

• urinary tract infections (UTIs)
• headaches
• constipation
• dizziness that can lead to falls
• confusion
• kidney stones
• pressure ulcers and skin conditions
• poor health

Essentially a nephrostomy is a foreign object entering your body so it is possible that the skin or kidney could develop an infection. Monitor the skin around where the nephrostomy catheter enters your body if the dressing allows. Good hand and skin hygiene is essential. If you feel generally unwell or have any of the following symptoms seek medical advice immediately:

• Pain or discomfort in your side, kidney area, lower back or around your genitals.
• Thick, dark or smelly urine.
• You develop a high temperature – over 38^o
• Shivering or chills.
• Feeling very weak or tired.
• Loss of appetite.
• Feeling sick or being sick.
• Unexpected or persistent diarrhoea.
• The skin around the nephrostomy catheter is sore, red, swelling, hot to touch or has an unusual discharge.