Mitrofanoff for retention of urine and self catheterisation

Hi All

I wanted to put this up after speaking on the phone to the MS helpline. I have not been diagnosed with MS as yet and waiting on an mri scan this week as have optic neuritis at present and a medical history that suggests I may have had MS since 1998…we shall see. Anyway I just wantd to let anyone know about a wonderful proceedure I had done in 2002, after struggling to do intermittent self catheterisation for 3 yrs through the normal route. Spasms made it very hard to take it out after and sometimes unable to insert it! 3 hrs stuck on the loo sometimes made life difficult!

In the end I decided to have the op and have not looked back since…rarely have UTis or bladder infections and have the freedome I didnt have before. They take your appendix or part of your bowel, and make a tube and attach it to your bladder and it comes out just beow the belly button. Not had many problems with it apart from it tries to heal over sometimes but mine was pretty small to start with. I have had to have the outer hole(stoma) stretched once but apart from that its amazing. I had mne done at Nottingham City hospital, by a Dr Adrian Jones.(urology) A great team there and on the whole i would recommend this highly to anyone who is struggling in the way i was. They were not able to expalin why I had the spasms or which nerves were responsible but after loss of sensation to need to go after a RTA in 1994,the functional problems of my bladder did not start till 1998 when I ended up in hospital with a bad kideny infection due to my bladder not emptying at all…ouch!

Your op sounds a success - so pleased for you - especially after all the time you battled with self-catheterising. l had a supra-pubic op done - about 18yrs ago. lt made such a difference to my life. After all this time my bladder has shrunk - l expect it looks like a deflated balloon. Sometimes when the district nurses change the catheter - they inadvertently push it in too far. lt then goes through the bladder and into the uretha and blocks the flow. This - as l bet you know- is horrendous.Not being able to pass urine is a very dangerous position to be in. l know now to ‘supervise’ the catheter change and insist the nurse takes care only to put it in as far as it takes to get a ‘flow’. My ms does cause the bladder to spasm and can make the ‘change’ very painful and difficult. But now l take Sativex - and a spray of this under my tongue certainly helps stop the spasms.

l recently took part in the - and had a researcher come to my home to interview me. l hope my experiences will help others.


Hi there…great t read your post on your experience. I think people should be aware of all the options regarding this and I didnt want a permanent catheter in as found them very uncomfortable and my pelvic floor muscles went into spasm too which was uncomfortable to say the least! I am awaiting a dx for my problems which go back a fair way but am having optic neuritis symptoms and nystagmus in both eyes…had my mri yesterday of brain so waiting to go back to the neuro eye clinic.!