Neo bladder female

Hi Dewdrop,Welcome to the group.I had my bladder removed in 2019.I didn’t have a neo bladder but the others who did will be able to help with advice on that.It’s very early days in your recovery.It will get better even if it doesn’t feel like it at the moment.Is there anything in particular you are struggling with ?   I’m happy to help if I can,I know how tough it can be.Best wishes Jane 

Yes, I had the op nearly 11 years ago. It is hard at first, but will get better. Happy to answer any questions as best I can.

Hi. I had my ureathral catheter out last Thursday and now have an infection even though I’ve been constantly on antibiotics. It’s so painful and I’m waiting results from a urine test from the hospit to be prescribed more antibiotics. I’ve been on so many back to back I’m worried my body will become immune. I’ve had big blobs of mucus come out when I go to the toilet. I try and go myself withouself cathing but found it really difficult the last couple of days. When will things improve

The mucus is quite normal. It will reduce in time, but will remain long term. Diet can affect the amount - make sure to drink plenty of water to help dilute it. I find that a lot of rich dairy foods make it worse. 

Are you on a timetable to empty? If you only had the cath out last week, you are still very early in training. You do need patience, it can take months to get well under control. If you need to self cath as well, don't worry about that. Ensuring that you are fully empty will help re infections. Learning to empty is tricky - try different positions eg leaning forward/back, twisting to start flow, as well as using muscles.

Once your neo is a better size, emptying may become easier. However, a significant number of females (including me) do end up relying on self cathing. Neo can shift shape inside - sometimes I can empty up to half myself, sometimes nothing at all, even though I feel full & leaky. Hope you start to feel better soon.

Hi thanks for the reply 

I tend to go every 2 2 1/2 hours at the min. I’ve found trying to go myself works only now and again so have to self cath every other time to make sure it’s empty. 
I find my belly aches after too so maybe I’m overdoing it with my stomach muscles. I know I’m early in my recovery but trying to find out what others have found helpful or works for them. 
when you feel all alone and struggling you feel everything is on you shoulders 

thanks again for your reply. It’s so nice to get info from someone who has gone through the same. It seems more common in men. I was the only female at the hospital that has had the procedure done. This worried me as some of the nurses didn’t really have a clue.

xxxx

Hi,The odd ache or twinge is not unusual in the early days post op.I found if I did too much I would feel sick so I soon learnt to avoid that.It takes time to recover from the surgery.It can seem slow and frustrating but you will get stronger with time.Your body needs to rest when you feel tired.I hope you feel better soon.Love Jane 

My CNS admitted she'd learnt from patients - largely passed on advice from them. You will probably find that you fill at a different rate according to intake, time of day etc. It's good to get to learn the sensation of being full. Having said that, because neo is made of bowel, which tries to neutralise contents, even with concentrated urine at night, you will fill more quickly than normal bladder & need to empty at night. 

I used to find I got very uncomfortable when full & there are all sorts of aches & pains while healing. It's natural to worry about every sensation & wonder if all is OK. To hasten getting neo to a  good size, I was told to hang on a bit longer each time. Are you having any incontinence as well?

Hi. Thanks for your reply. 
I wrote a big reply back to you yesterday and it disappeared and didn’t have the strength to do it all again. 
yes I get the fullness and heaviness sensation when I need to go. Sometimes I sit and can go no problem others I just get a dribble and have to bear down but still doesn’t empty properly and end up having to go again soon after a self cath. Don’t know why but it’s harder to go during the night. I start to leak during the night which wakes me up to go. 
I really need to be patient but I’ve been ill for so long and I’m desperate to get better. I’ve been to hell and back. 
thanks to all who read and respond I’m so grateful that there’s other women out there and I’m not alone.

You're actually doing very well, though I understand it may not feel that way. You're still recovering from a huge operation, apart from anything else that has gone before. I don't want to contradict any instructions your hosp may have given you, but if you only get a dribble, even after a bit of 'being zen' an trying different tactics, then do self cath on those occasions.

Nights do take longer to improve & you are more likely to leak at night when muscles relax. I prefer not to set an alarm, so still wear a pad at night as I do quite often leak to some extent & may not wake at a good time to void. 

Sometimes, keeping a kind of journal can help - I recorded each new achievement during recovery (resuming a former activity). When I felt frustrated at how little I could do, I would look at that & see how much I had improved. Try to keep building up walking each day, keep eating little & often, concentrating on protein & carbs, as well as plenty of rest.

Do or have you suffered cold sweats? I get these all the time especially at night. I had them really bad in hospital. I put it down to the infection from the catheters as I was like this when I’ve had them in before. They did give me a boost of intravenous antibiotics on the day they took my ureathral one out and a course to take at home. Iv finished them now and thought I was getting better but they have comeback with avengance. I’ve took a urine sample to be tested and still waiting for the results. I’ve called the doctor and hospital for advice and they still haven’t got back to me. I’m worried if I’m left and it is infection I’ll end up with sepsis again. 

thanks xx