Mitrofanoff

r.newton7 · Joined: 03 Jun 2007 Posts: 9 Location: Nottinghamshire

my son is due to have a Mitrofanoff operation in october can anyone tell me what this will involve?

Janet Fishwick · Site Admin Joined: 06 Mar 2007 Posts: 6

The Mitrofanoff procedure is an operation which is performed to gain urinary control. The appendix (if it is available) is taken from it's natural place in the bowel. The appendix is shaped like a straw and one end is attached to the bladder whilst the other end is brought out onto the child's tummy. The child is taught how to pass a catheter down the Mitrofanoff in order to empty the bladder thus gaining urinary control. Often, at the same operation, the bladder is made bigger using a piece of bowel.
This is a big operation and there will be a lot of tubes/catheters and the length of stay in hospital may be different in different hospitals. It would be a good idea to speak to the nurse specialist at the hospital where your son's surgery is to be performed. It may also be useful for your son to be seen by the Play Specialist (if one is available at your hospital) prior to his surgery.
Please do not hesitate to contact me again if you would like further information.

Janet

r.newton7 · Joined: 03 Jun 2007 Posts: 9 Location: Nottinghamshire

My son is only 18 months old so i will need to catherise him myself. Will this hurt him? I don't know whether he will actually allow me to do this as he is very strong willed!!! Crying or Very sad

Cervellione

Hi,

I think you should get in touch with the paediatric urology team looking after your child and ask these entire questions directly to them, before signing the consent form for the continent urinary diversion (Mitrofanoff).
In Manchester we do not perform any Mitrofanoff in children less than 5 years of age and there are advantages and disadvantages in doing this.
You must know exactly what the operation involves before giving your consent.

RMC

lianne · Joined: 12 Jun 2008 Posts: 4

Hi my daughter is nearly 3 she had a big op at gosh back in january to hope to gain some bladder control by forming an artificial muscle in the bladder neck, we are unsure if this will work as she has such a small bladder. I am wondering why this option was not given to you for your son? Had her bladder not been so small it should have been pretty likely to be succesful, we are observing her over the nx couple of years. I wondered if there is a reason they have not offered this to you??

r.newton7 · Joined: 03 Jun 2007 Posts: 9 Location: Nottinghamshire

My son had quite a large bladder capacity for his age about 300mls when he had the operation, nearly two years old. I'm told most adults have about 500mls+. There really was no other choice as he had no bladder neck and no urether running thru his penis... He needed a way to be continent and to wee so the mitronoff was the only way. I was worried at the time but it is a good op and at nearly four years old now we've had hardly any problems and if the mood takes him he can cath himself with supervision of course!! He does get upset sometimes but think he felt grown up when he returned to nursery and the rest of his friends were still in nappies. Obviously at nearly four the rest of his friends are potty trained and he feels no different as he too can go for a wee standing up like his buddies.

Kyla Hooper · Joined: 11 Mar 2010 Posts: 3

Hello

I have launch a "patient" website for people with a Mitrofanoff and their nearest and dearest. Please came and take a look, I will help you with and questions as best as I can.

Hopefully talk to you soon!

www.mitrofanoffsupport.co.uk

r.newton7 · Joined: 03 Jun 2007 Posts: 9 Location: Nottinghamshire

Hi I posted quite a while ago see strands above.

Just wanted to update as my story seemed negative and we were worried about the mitronoff op. My son is now 4 1/2 years he will be 5 in dec. He doesn't mind being cathed at all- he can even do it himself when the mood takes him! We did struggle at first but now its like second nature. He has a colostomy also which can be tempermental but is much improved since he was a baby. We use a delivery company called fittleworth for all his supplies they're great and make it that little bit easier instead of messing about with prescriptions and pharmacies. My son has recently had his spinal cord untethered so i can answer any qs on this.

Things can seem tough and neverending when they are small but they do get better!