Forum

Mitrofanoff

Hello Everyone

My name is Sarah and i am new to the forum.

I wondered if anyone out there has had a Mitrofanoff procedure. Plus also takes D Mannose

I have had SPC fitted in January as i found other options hard to achieve now and after two yers of umming and aarhing and due to the fact it could have an effect on my Kidneys and also help UTIs i decided to go ahead.

Unfortunately the aneasthetic knocked me off my feet and since the op every two weeks i have antibiotics due to UTIs i have to say it is getting me down, the only plus side i find is that i cannot believe how much water one person can retain and now i get rid of it all lol.

I am hoping that some of you wonderful people will be able to offer advice of any kind but also if you have looked at this other procedure or had it done.

I hope that you will all reply.

Thank you

Sarah

Hi Sarah, sorry never heard of it. I’m still trying to manage bladder control, can’t believe how little mine holds before I’m desperate. Can’t quite balance trying to drink more without desperately trying to get to loo. Yes have spoken to continence nurse and started some tablets finally, but still have that urgency to struggle with.

no help whatsoever, sorry xx I’m sure more useful comments will follow.

Ooh and welcome …

hi sassy

blimey aren’t these doctors clever?

i’m at the early stages of self catheterising and really don’t want to go the surgical route, at least not yet.

anyway it sounds an efficient method and is recycling the appendix, which can’t be bad.

(thanks google)

good luck

i hope someone with more experience comes along soon.

carole x

Yes - l had to google to see what it was. l had a SPC done about 20yrs ago - because of constant wetting and uti’s - and l rarely get a uti. l have the cath changed every 5/6 weeks. So there is less chance of introducing infection. lf you have any control of your bladder you can use a flipflow valve to empty when you need. l lost complete control of my bladder 33yrs ago - it was one of the first symptoms.

And yes, l also take D-mannose - to help keep my bladder healthy - also apple-cider vinegar and honey to help balance the PH in the urine.

Hi Slug

Thank you for your reply i used to be the same i think or the opposite as i didnt go all day and then it as just getting rid of the overflow not everything. It could be bladder spasms that make it worse it does for me.

I hope you get sorted and things start to settle down

Take Care

Sarah

Hi Carole

Thank you for your reply and yes it is quite amazing

I didnt want to go the surgical route either but couldnt quite see properly or get into the positions required anymore ,dont think my yoga helped me LOL.

I wish you all the best.

Sarah

Hi Spacejacket

Thank you for responding.

I hope you dont mind me asking as i dont know if you are M/F

How long did it take to settle down and heal, how often do you take the D-Manosse and has it had an effect on weght with it being sugar as i have to be careful with sugars because of Candida.

I have it changed 6 weekly.

I do still wet and my bag comes off now and again at night from spasm ,as it doesnt happen all the time so the fitting is ok.

If you have any advice i am always welcome to it.

Thank you

Sassy