Neobladder leak

Hi Potter100.
My NeoBladder leaked into my drain bag rather than catheter bag as I wasn’t getting rid of the mucus properly. Not my fault, just a miscommunication on how I should have been flushing.
Because of that my catheter remained in for 6 weeks after the operation.

In hindsight I actually think that wasn’t a bad thing as I had extra time to heal and when catheter was removed I could easily hold urine and void.

Nearly 12 months on and I hardly know I have a NeoBladder. 100% dry during day and nearly 100% at night.

So yes, leak was resolved more than satisfactorily.

cheers
Chasam

Thanks for the reply Chasam,

                                               great to hear that everything is going especially well with your neobladder. Hindsight does allow us to be a little more philosophical but in real time these things can be frustrating. I’m, perhaps wrongly, putting it down to my ureter stents not working.

My catheter only works intermittently, and despite the depends likes to give me a good soaking usually publicly or at night.  Hence, I had raised my expectations regarding its removal. If anyone, and I’m sure it’s commonplace, had similar problems with their catheters, please comment if you have any tips as regards better catheter management/retention. Have a good day all.

Is that urethral catheter or suprapubic? Normally they're connected to a bag, but is that where the leak occurs? 

I had a small leak detected which meant having stents left in for 6 weeks, which became quite painful as skin started to heal round the stitches. Initially, these were my leak point - in hosp, kept disconnecting from the drainage bag & soaking the bed. After neo went live, I taped over the stent ends so I could remove the bag & keep skin wound dry. 

My neo was activated only 2 weeks post op & it was a tough time. Although I was glad to get rid of most of the tubes & bags, they were replaced by huge incontinence pads. It is a slow walk, not a race - have patience!

Stents were removed 6 weeks post op, just when I had achieved a good neo capacity. Co-incidentally, that was also when I started having difficulty emptying. Take advantage of the extra time to rest & recuperate. Good luck when you do go live with neo.

Thanks Teaswill,

                           it’s a urethral catheter. It frequently leaks at the end of the penis. Nothing reaches the leg bag when this happens! Mentioned it to the hospital but they think it’s normal and I’m voiding still. Diarrhea is the current concern now. It’s a dark brown colour tonight. First time I’ve encountered this colour. I’ll keep an eye on what happens over the weekend and if there’s no change I’ll contact my designated nurse on Monday. It seems, at least to me as a newbie, that there’s a new hurdle to jump , or at least to observe, everyday. I’ve discussed my diet and routines with the hospital and they approved. I’d appreciate any dietary tips if you have any. Take care!

Hi Potter100,I’m sorry you still have diarrhoea.What sort of foods are you eating ? Jane x

Yes, things can keep changing. Bowels can be very erratic for a while & I was warned there might be some permanent changes. At this stage you need to concentrate on carbs & protein, little & often, plus plenty of fluids. The issue with the catheter must be annoying - urine leaking round instead of going through. I have to self can’t to fully empty & occasionally get 'dual fliow'.

Hi winkers     

                 I’m eating pretty bland food. Lots of mashed potatoes, vegetables with fish or chicken. I eat fruit as well in between meals. Drinking on average 1.6 litres of water and hoping the food will round that up to 2.0 litres. I do feel like I’m being waterboarded though. Of course, I know it’s necessary and endeavour to do my best. Not sure what else I should be doing in terms of food and drink?

Hi Teaswill

                  it is annoying and extremely exhausting. I tried a double irrigation last night as I’ve had more mucus the past couple of days. It worked a treat and I had no leaks through the night. It was the first night since leaving hospital where I felt well rested and consequently happier in myself. Just audited the irrigation equipment and there isn’t sufficient syringes to cover me until my next cystogram. Shall contact the hospital as they are my sole supplier at the moment. I wonder if I could get these from my GP which would be a shorter journey for me?

Hi Potter100,I ate very bland food too,but I couldn’t eat a full meal to begin with.I found it easier to take small amounts of liquid throughout the day.Which fruits are you able to eat ? I was ok with bananas but avoided the more acidic fruits at the start of the recovery.I know oranges can cause diarrhoea in some people.Love Jane

Yes, mucous is a problem, especially at first & often first thing in the morning. Need plenty of fluid to help dilute, including at night. I find a lot of rich dairy food tends to provoke more mucous, which irritates neo & can provoke leaks, so maybe note if different foods help or aggravate. It is one of the long term features of cystectomy. 

Worth asking GP, but don't know if they could supply. How many days short will you be?