Bladder removal experience anyone?

[flibertygibet]

Hi there..really writing on behalf of my sister who is having her bladder removed in a few weeks due to cancer.

She has to decide between a neobladder (a pseudo-bladder fashioned internally) and an ostomy bag. She is really struggling with the decision.

Just wondered if anyone has any experience with either of these, positive or negative?

No experience, but it sounds like a difficult choice to be faced with - your poor sister.

Is there a way she could try the first option, then if it didn't work out, still have the second as a back up? I'm not sure what the success and after effects are for each option.
Sorry not to be more help,
Please send her our love.

Thanks Fliight..

No it's an either/or situation.

To have the neobladder means more chance of complications i.e. infections, incontinence, self-catheterization but no bag on the outside. To convert a neobladder to a regular bag is another HUGE operation that is not really an option as far as I understand. It's just not that simple. She's concerned that long term, a bag may be simpler.

thank you for your thoughts!

yes, I can see her point on that. It does sound like a risky proposition.

Trying to think of other angles - what is the chance of the cancer recurring with the different options? That might be a factor. Or it might be about equivocal.

Off to look it up, I hope you can get some experiences - Saturdays on here are so quiet aren't they.

this seems to minimise the risks of anything being abnormal afterwards, but may not be the whole picture.

It sounds encouraging though.

Also excellent

If you read particularly the last few sentences of the paragraph, it looks really good. I didn't know they'd been doing it for so long!

Thanks for those links Fliight...my sis has read loads and loads of articles on both neobladder and ostomy...she's just convinced she'll be one of the unlucky ones where the neo doesn't work (20% of women are incontinent afterwards..therefore have to self-catheterize every hour) and she is also worried about what will happen when she is elderly.

But the bag option is worrying her because she thinks she'll never have sex again i.e. no man will want to shag a bird with a bag! I've told her that's ridiculous and if she meets someone that really loves her, he won't care.

Oh crikey. I guess that article was about blokes, not women...sorry.

those stats are scary, aren't they...but then there is the effect as you say on her self esteem, with the bag.

I wish I could come up with a wonderful third solution!

may I ask which type of cancer she has? Don't say if you'd rather not.

She has bladder cancer...small cell carcinoma (very bad) plus transitional cell ( bad but not as bad).

It's all shit really.

My mum has had a urosotomy for nearly 20 years, and would recommend it in your sister's case without hesitation. Many of her complications arose from experimental operations, and given the choice again (and with someone who could have advised her at the time) she would have had a urostomy way before then.

She also works on a volunteer basis for the Urostomy Association and regularly gives advice and support to people in your sister's situation (alongside lots of other members). Might be worth contacting them? Hth.

thank you Feenie...my sis is leaning towards the bag as it seems like a simpler option...

I think that's my mother's experience. If she talks to someone at the UA they will tell her all the pros and cons honestly, having gone through the experience themselves.

Your poor sister. I have a colostomy, which is the easiest stoma to deal with. I didn't have a choice. Although I would obviously rather not have it, I can live easily with it the vast majority of the time.

A 1 in 5 chance of having to self catheterise every hour sounds pretty grim to me. I've had complications with every operation I've had so I can understand your sister's pov.

When I was first getting used to mine I used a forum called ostomyland. I don't know if the UA has a forum. If it doesn't, ostomyland might be a good place to ask questions.

The problem she needs to consider with health forums is that they are over populated with the people with severe problems. In general, if people have a urostomy and all's well, and they're just getting on with life, they are less likely to use a health forum as their main "home". My experience, anyway.

I'm sorry to hear of your sister's cancer. Have name-changed for this as there's some sensitive family stuff here.

My MIL had a urostomy in her 70s, she wasn't (as far as I know) offered the neobladder option. She coped very badly with the operation and the bag-changing and seemed to be overwhelmed by the practical aspects of it. We found a website (the UA, I guess) which was very upbeat and encouraging and talked (for example) about resuming sports and travelling abroad, but my MIL felt too anxious and incapacitated to leave the house.

I mention this not to be discouraging - I imagine that your sister is decades younger than my MIL and probably has a different outlook - but she is right (I think) to be thinking about how she would feel about the bag. The risks attached to the neobladder are worrying, but if she would not come to terms with the bag, then maybe that would still be the right way for her.

Speaking to someone from the UA sounds an excellent idea.