Neobladder and Infections - Please help!

That certainly isn't a good outcome with neo. Did your Mum not have a CNS to follow up progress with neo? Nor follow up with the consultant? Sounds like she never got it trained properly to start with and perhaps now it's too late to do that. It is also possible that she has a fistula causing urine to leak via vagina.  Can she sense fullness OK? Would be worth checking how much she is self cathing to get some idea of capacity of neo. 

I have neo & do have to rely on self cathing to fully empty, but I am continent, although needed pads initially. 

She really needs to see her consultant again - should be having follow up anyway. If she is very unhappy with neo, it is possible to have surgery to convert neo to stoma. Best wishes, it all sounds miserable.

Thank you so much for replying to me.  it is very appreciated. My mother had the surgery done in Italy (Sicily), where unfortunately the healthcare system isn’t the best. After the surgery, she only had a few ultrasounds with a urologist, who confirmed that everything looked fine.

She then made an appointment with her surgeon to discuss her infections and incontinence issues, but he told her, “It is what it is,” and said he couldn’t help. She hasn’t had any proper follow-up care, no one monitoring her progress or offering advice.

Out of desperation, she paid privately to see an osteopath who claimed to help train the neobladder, but it didn’t work, and she ended up wasting a lot of money.

She doesn’t feel any sense of fullness and has tried sitting on the toilet, but nothing comes out — so she has to wear nappies. She’s now trying to find another urologist who might be able to help her.

Can I ask — do you still have to wear adult nappies? Have you had any infections since your surgery? Thank you 

Ah, makes sense that the follow up has not been same as UK. A specialist urologist is a good start. Rather than an osteopath, a specialist physiotherapist (or specialist nurse) might be able to help with pelvic floor exercises for continence, but 4 years on, neo will have lost some elasticity and might not be so easy to train. You need to stretch neo in the early days so that pressure of urine inside is reduced and continence should improve.

I'm fortunate, I have had no infections with neo. In the first few weeks I managed well to expand neo, learn sense of fullness and technique to empty. However as I got more active, I lost the ability to fully empty, started relying on self cathing. I needed huge pads at first, gradually reducing as continence improved over the first months. Now I am 13 years post op - I use liners by day, just for reassurance or to catch the occasional drop that might leak if I get very full. Night time I rely on sensation rather than set an alarm & that is not always reliable. I use a '2 drops day pad' which usually suffices for leaks. 

I suspect your Mum is not getting full enough to feel the sensation, nor to be able to voluntarily empty. What a shame - when it works well, neo is great. Best wishes.

Sounds like you had a good experience with the Neobladder, I’m pleased for you! People often complain about the NHS here in the UK, but honestly, I think it’s because they haven’t seen how bad healthcare can be in other places. In Sicily, it’s very poor.

After her surgery, my mam was basically left to figure everything out on her own. Apart from a couple of ultrasounds, there was no proper follow-up. Over there, you have to find specialists yourself, do your own research, and it can also cost money.

She’s never been able to feel her bladder being full or fully empty it. She has recently started using disposable catheters and she can go 3 hours without changing her nappy, and she’s quite happy with that.

I think it’s great that you are only using small pads, and you also had no infections.

I understand that what she’s going through isn’t actually normal, and I really hope she finds a solution soon. 

Thanks again for sharing your story, all the best to you!

I hope your mother can get some help.I’m so sorry to hear she has had problems with the neo bladder and no follow up.Best wishes Jane x

Thank you for your kind words, my mother had a tough life and she’s also a stroke survivor. We’ll see how it goes, maybe if she had the surgery in UK it would have been different, who knows.

Oh that is tough.I nursed my late mum through a brain haemorrhage and multiple strokes.It is amazing what people can survive.They didn’t think mum would come through but she lived for 16 yrs.Let’s hope your mother can get the care and help she needs.Jane x

I’m sorry to hear this, it must have been incredibly tough for both of you. It’s good to hear she lived another 16 years after that.

My mum is 64 now. I often wish she lived with me so I could be there for her as she gets older, but I chose to stay in the UK, and I guess that comes with its sacrifices. It’s not easy being far away from family, especially as they get older. Take care xx