New Neobladder

Warren
After all the surgery and scarring and pain is over........ incontinence remains as your faithful warm friend.

I am about to celebrate 5 years free of this dreaded disease. But my "little friend" is still around as a reminder. I am able to go without any "pads" during the day, and most nights are "dry."
And then, for some reason...... I wake up surprised and wet! Lucky for me.... my wife has a good sense of priority, and we just "deal with it"


I guess, with all the good things that have happened, this is my reminder of what I went through.

I wish you the best.... and Dryness! But it will take time. It gets better ... but VERY slowly indeed!

Sincerely
George

Hi Warren, Congrats on your NEO. Unfortunately, improvement is measured in week/months, not days. You are doing the right thing by "trying" to void every two hours. Then three, and finally four. Be patient. This will be the most humbling thing you will ever experience. It took me 3 months before I was confident enough to leave the house with out protection. You will be able to look back and laugh in the near future. Trust me.

Wet is better than dead, Jim

I could have joked that maybe my patients would appreciate that I'm wearing diapers just like them, but the ones who are that young wouldn't appreciate it anyway.
I think I've mastered what makes the difference in whether or not the Gee Whiz stays on, and the Afex seems good for daytime use which takes care of work. I haven't been sitting home. I've used diapers over the Gee Whiz in case of detachment. I don't think that would work with the Afex, but if I feel it slip, I can adjust it externally, hopefully discreetly. And I travel with a bag that has a change of pants, underwear, equipment, pads, and diapers, so hopefully I can detect a potential problem and deal with it before I have to explain to a patient or parent why I'm sitting in a puddle.

Hi Catherine,
Most things are great, and I've been feeling well since I'm home. Unfortunately the incontinence has not improved one iota. I've even observed dripping when I thought I was doing my best to hold it in. I'm trying to do my kegels regularly. I've been experimenting with a variety of devices. Diapers were awful. I felt like I was sitting in a swamp, and I had to wake up at least every 2 hours to change the padding. And I would still sometime overflow and have to change my clothes.
My next experiment was with a condom catheter called Gee Whiz. Unfortunately it has to be applied without being tight enough to restrict blood flow or urine flow through the urethra, but it can't be too lose or it can slip off. I've had days where I thought it was going great, and then middle of the day disaster strikes. I think I've mastered it, but as with any catheter, internal or external, one finds that he restricts movement so as to not pull on it, plus it and the leg bag become irritating after a while.
Now I'm trying the Afex system which is a brief with a built in receptacle and a bag that hangs directly from it. For vigorous activity the bag can be strapped to the leg of the brief. It's good for daytime use, but won't work well for lying down since it depends on gravity and doesn't seal with the body.
I have one more type of device on order and will finally decide what's best. Unfortunately, all of these devices would work more reliably on someone who is well endowed, and each of them has the potential for leakage or detachment depending on how one moves.
I have an appointment with my urologist next week and we'll see if he can offer any help.