Neobladder vs Mitrofanoff

Hi, I was 57 when I had my op. I was interested in Mitrofanoff, but my surgeon advised against because more likely to need revision at a later date. He was willing to do it if neo turned out not to be feasible. (They always mark up for stoma just in case they find during surgery that this is the necessary option.) I do have neo & am very happy with it, but it was hard work at first.

With both options you have to stretch the internal pouch to a good size to gain continence. With Mitrofanoff you catheterise through a small opening (rather than the larger stoma for a bag). So you need to be sure to carry supplies with you. I guess you need to empty it at night too, like neo. Getting up at night has been the worst aspect for me!

With neo, (& I think mitrofanoff too) there is likely to be initial incontinence (managed with pads) & learning the new technique to empty. It can take weeks to months to get reliable continence. The time between voids starts at 2 hourly, but gradually you can extend that. I need to self cath my neo to fully empty - happens more often for females than males - but I don't mind doing that at all. 

I'm not sure that there is anyone here with Mitrofanoff, but if you google, there are others out there (it's sometimes used for people with conditions like spina bifida). In the US they do an equivalent called Indiana pouch (IP), so you could search for that too. 

Happy to answer any specific questions. Best wishes.

Thanks a lot Teaswill, very much appreciated! It’s the self catheterisation as a male that puts me off but perhaps I’m being unnecessarily squeamish and one just get used to it!

Hi, I still get squeamish when I do it to be honest. Fortunately I only have to self catheterise occasionally and only recently on advice for pains in my tummy that I now get.Generally I empty very well and at first advised to check by self catheterise and there was nothing left in bladder.

I have the normal neo bladder and even 5 years on wear a pad during the day , tiny leakage and a full pad at night, generally dry but sometimes very wet if I have drunk a lot and very tired. Of course alcohol can make it worse but small inconvenience as I do like a tipple. Life's too short. I get up once during the night with help of an alarm or if I feel leaking.

I have done all the exercises and still do but was warned not everyone can become dry. Sometimes annoys me but again small price to pay and doesn't effect normal life. The only thing is long journeys and planning stops.

Hi Lugsy, thank you for sharing your experience so far, it is very helpful.

Re the self cathing, they are narrower caths than those put in post TURBT etc. I understand that for men, if prostate is also removed, this makes the path easier...

The catheters are quite long for men, for both Mirtofanoff & neo. Some hosp require you to learn & do it daily at first, or in case needed. Some don't require it at all.

Just to add, although I regard myself as dry by day, I wear a liner in case of the odd drop escaping. A 'day' pad suffices for night leaks. Like Lugsy, depends on intake & sleep pattern.