For Children | MitrofanoffSupportv2

This information explains the Mitrofanoff procedure and is for you to read with

your parents. It is an overview of the operation which will increase your understanding.

It is intended to be additional to the information given by your doctor or nurse.

Why a Mitrofanoff?

For many reasons some people cannot be dry or empty their bladder without help.

This will probably have been a long term problem for you and you may have tried

How should the renal system work?

The renal system is the medical term for the organs that make the urine. It is helpful to understand how this should work.

The Kidneys – most people are born with two kidneys. They remove harmful products from your body. The kidneys makes your urine.

The Ureter – each kidney has a ureter. This is a narrow tube that takes the urine to the bladder.

The Bladder – this is like a reservoir. It stores the urine until you chose to empty it.

The Urethra – this is the way out. A circular muscle (sphincter) at the bladder end of the

urethra is shut when the bladder is storing the urine and opens when it is time to empty.

What is a Mitrofanoff?

It is named after the Doctor who thought of it.

A Mitrofanoff is a catheterisable channel from your abdomen (tummy) to your bladder.

This means that you can pass a catheter into your bladder from the channel opening

on your tummy and empty your urine.

You will probably have to do this about 4-6 times a day.

Before making the decision

The formation of a Mitrofanoff is a major operation and you must be completely sure it is the right operation for you. Perhaps you would like to speak with or meet somebody who has already got one. Your Nurse Specialist should be able to arrange this. Mitrofanoff Support may also be able to help with this.

Sometimes the Mitrofanoff is necessary to keep you healthy, in this case you may not have the choice to wait. Other times it may be an option to enable you to be dry, in this case you can have as long as you need to make your choice.

The operation

Every hospital is different and it is important that you get specific advice from your Consultant and Nurse Specialist.

You will probably be admitted the day before the operation. Due to the nature of the operation your bowel may need to be emptied using bowel prep. The consultant will discuss this if it is needed. To keep your bowel clean you will not be allowed to eat anything except clear fluids like soup so the doctor may have to put a drip into your arm to stop you getting unwell. This is because your appendix, which is attached to your bowel, or a piece of your small bowel will be used to make your Mitrofanoff and it has to be as clean as possible.

On the day of your operation you will be taken to theatre. Your mum or dad can go with you. They will stay with you until you are asleep. You will be away from the ward for about three hours unless you are having other operations at the same time.

After the Operation

After your operation you will be taken back to the ward.

You will feel sleepy because of the anaesthetic and strong pain relief.

You will have a dressing over your operation site and two catheters in your tummy. One in your new Mitrofanoff and one going into your bladder from your tummy, this is called a supra pubic catheter. Both will have bags attached to allow your urine to come out.

Over the next few days the doctor will listen to your tummy. He will tell you when it is working again and you will be able to drink and eat. The nurse will take out your naso gastric tube. When you are eating and drinking the drip will be taken out.

You do not need to stay in bed, as soon as you feel able your nurse will help you to get out of bed and you will be able to go to the play room.

You will usually stay in hospital for one week. Your mum or dad will be able to stay with you.

Going home

When you go home you will have two catheters in your tummy.

Sometimes you will have to take medicines to stop infections and pain due to the operation or your bladder not liking the catheters (spasms).

A nurse will visit you at home to make sure everything is okay with the catheters and the wound on your tummy. You should not have a bath or shower until the wound has healed. Your nurse will be able to tell you when.

If all is well you can go back to school. You can take part in lessons but not PE.

It is important that your school is aware of your Mitrofanoff and that somebody knows how to care for you. Your community nurse will have worked with your school to ensure this.

In about three weeks you will come back to the hospital. Your Nurse Specialist will take the catheter out of your Mitrofanoff and show you and your parents how to catheterise.

The supra pubic catheter will stay in your tummy until you are happy to empty your bladder through your Mitrofanoff. Then the supra pubic will be taken out.

If you have your native bladder you may not need the following regularly:

Bladder washouts – You will not produce as much mucus. However this may be required post operatively.
Vitamin B12 – Is absorbed in the terminal ileum and therefore if no bowel has been used vitamin B12 should be absorbed as normal.
Bicobchloride – If a native bladder is used for the reservoir and no additional bowel is required there should be no imbalance or absorbed of bicarbonate or chloride.

Life with a Mitrofanoff

Hopefully having a Mitrofanoff makes your life easier. It will allow you to lead a normal healthy, independent life. It should not stop you doing anything that you want to.

What can go wrong?

You cannot insert the catheter into theMitrofanoff?

Try to insert the smaller size catheter

If you can do this, leave this catheter in place and plug the end using a spigot

Contact the ward or Nurse Specialist for advice

If a smaller catheter can't be inserted call the ward or Nurse Specialist for advice

If you are wet in between catheterisations

If you are usually wet in between catheters this may be a sign of infection, poor bladder emptying or a change in bladder behaviour

Have your urine tested by you GP

Let your Nurse Specialist or Consultant know

Your urine becomes infected

Signs of infection include dark, smelly or cloudy urine

Have your urine tested by your GP, you may need a course of antibiotics

You notice blood in your urine or catheter

A small amount of blood, in the catheter is common especially when you start using the Mitrofanoff

If the amount increases or continues for a long time, please call the ward or your Nurse Specialist

Your Mitrofanoff is red, inflamed or bleeding

Passing the catheter into the Mitrofanoff can sometimes cause this, but it usually stops when the catheter is removed

If this continues, please contact your GP or community nurse

If there is concern contact your Nurse specialist

Your Mitrofanoff is sore and oozing

Infections sometimes occur, usually fairly soon after the operation, contact the ward as you may need a course of antibiotics

In the long term, any weeping from the Mitrofanoff is likely to be mucous, this is quite usual

You can cover the Mitrofanoff with a small dressing or plaster if the oozing is affecting your clothes

Urine seems to be leaking from the Mitrofanoff

Contact the ward as the Mitrofanoff may need checking

Remember

Please remember that no hospital is the same and every Consultant has a different approach to care. However it is important for you to have the most up to date information. Along with the information available from your own hospital, The Great Ormond Street hospital web site is easily accessible and has up to date relevant information on Mitrofanoff care. This is available at www.gosh.nhs.uk/medical-conditions/

This information has been written by a Paediatric Urology Specialist Nurse

For Children