New here saying hello

Hi . I went a different route, but just let me welcome you to the group. We have members here with different types of diversion and should be along to share experiences. Let us know the outcome of your meeting. Best wishes.

Hi Riley, Thanks for the welcome and reply.

Hi Brutus,Welcome to the group.There are a few of us here who are living with new bladders.We can help with advice and support.Best wishes Jane

Hi Jane, thanks for the welcome. I saw my consultant yesterday, after he went through the options, I have opted for a bag on the outside through a stoma. Before seeing him yesterday I was going to opt for a constructed bladder inside, with a stoma. To empty it you pushed something into the stoma. He said that type was “fraught with problems. He,s the expert so I settled for what I described above. My operation is booked for around the sixteenth of January. Have a great Christmas. Best wishes Brutus

Hi Brutus,I’m glad you have had a chance to discuss the options.There are pro’s and con’s to both neo bladder & Ileal conduit ( stoma) You will need to be as fit as possible before the surgery as it is a major operation.Recovery time varies but most people find it takes months to fully recover.I had improved after 3 mths but by 8 mths I felt much stronger.Anyway we can help with any questions you may have.Best wishes Jane

Hi Brutus

Welcome.

I decided to have a stoma because I too thought the neobladder route not to my taste,  too fiddly. There are folks on here that swear by a neobladder. Of course it is all subjective.

I had the op 21 months ago and have totally got use to my Stoma (Basil, after Basil Fawlty).

Basil is very user friendly and he saved my life.

It's a long old recovery to be sure but Basil and I are fine now

Wishing you all the very best

Love Inanna x 

Merry Christmas   

Hi Brutus,
I am one of those pro-Neobladder people Inanna refers to.
Had my NeoBladder last year and am so pleased with my quality of life now.

You should ask your consultant what he means by ‘fraught with problems’.
Yes, there can be issues. I had a setback when my NeoBladder leaked, and it was a tough few months.

But now, 18 months on, the only issue I have is having to set my alarm at 3am to make sure I empty.
Even that is not always necessary as I do get the urge to go and wake naturally.

I wore Depends for the first 9 months but have stopped wearing those now and just wear boxers at night in case of any small dribbles; which nearly never happens.

Daytime is exactly the same as with original bladder.

Again, as Inanna righty says, it’s all subjective and we are all different.

I really would explore Neo further with your consultant and if there are valid reasons why you can’t have one so be it,but you need all the facts.

happy to answer any questions or speak if that helps.

cheers 
Chasam

I think the option Brutus's consultant refers to as fraught with problems is the Mitrofanoff (Indiana Pouch in the US), an internal pouch like the neobladder, but emptied via intermittent catheter in a small stoma (often in the navel). I was interested in this option, but my consultant advised against, saying it was more likely to need surgical revision later on.  Neobladder also has greater potential for complications compared with stoma & bag, but it maybe also be that some consultants are not keen to do it as they don't have adequate experience.

I have neo & am very happy with it, but if someone is content to have stoma & bag, I would never try to persuade them to neo instead.

Teasswill
Sounds like you are suggesting I am trying to persuade Brutus to change his mind.
Definitely not. Just wanting him to.have all the facts and to question consultants and if necessary get a second opinion.

As we all know this is a life changing and probably irreversible decision.

Hi Inanna

Thank you for the welcome and info. Good to hear you are doing well with Basil :)..

Hope you have a good Xmas.

Best wishes

Brutus