childrens-katie

It is important that children & teens have all the information and support that you need when you are going to have a life-changing operation, such as the Mitrofanoff procedure. So it is important you understand what is going to happen both short and long term.

Gathering information

Gaining information of what the operation entails, as well as what to expect from the operation, will help you understand the reason as to why it is needed.

There are numerous ways of gathering information

The Consultant will be your initial point of contact so taking a diary to appointments will help by keeping a record of questions to be asked as well as the answers that are given. Remember to ask as many questions that you want to ask however trivial you may feel they are.

The Paediatric Urology Nurse Specialist (PUNS) works closely with the consultant and will be able to answer any questions that you may have missed with the consultant.

Support groups are available to provide information that is usually non-professional and more of experienced based. They generally allow peer to peer contact which provides for emotional support. See below how Mitrofanoff Support can provide support.

The Internet is a great way of gathering information, however care has to be taken as some information may be irrelevant and may cause you to worry unnecessarily.

Questions to ask before having the Mitrofanoff procedure

You are likely to have lots of questions prior to having a Mitrofanoff. Below are a few key questions that you might want to ask the healthcare professional, for more questions please refer to our FAQS page.

  • What happens in the preparation, during and aftercare of the surgery?
  • What complications can arise during the operation and afterwards in hospital?
  • Once the Mitrofanoff is working, how will I know when it is time to empty my bladder? Will I get any feeling they want to go to the toilet? How often should I catheterise?
  • Who should I contact if I have a problem?
  • How do I get my catheters once I leave hospital?
  • Will I be able to lead a normal life?

How Mitrofanoff Support can help you

Mitrofanoff Support aims to help you feel supported by:

  • Outlining the details of the Mitrofanoff procedure.
  • Suggesting some questions you may want to ask a healthcare professional before the Mitrofanoff procedure.
  • Putting you in touch with others. This can be beneficial both before the procedure, so you can ask questions about other people’s experiences of having a Mitrofanoff and afterwards, as you learn how to use the Mitrofanoff, when you may want to “compare notes” with others who have been through a similar situation.
  • Forum and social media where you can interact with others and share experiences.
  • Patient Education Days, where you can come along and learn more about the Mitrofanoff procedure from health professionals, meet other people living with a Mitrofanoff and see the different types of catheters that are available. Children are welcome at these events.
  • Letting you know you are not alone.

 

Medical information for children & teens click here http://www.mitrofanoffsupport.org.uk/learn-about-the-mitrofanoff-procedure

For more medical information, the operation process and much more click here http://www.mitrofanoffsupport.org.uk/medical-information/