New Neobladder - 100% Incontinenence- Is this typical & when will it get better?

Thanks for sharing, my husband was very encouraged

My RC and neobladder were done in March 2008. When the catheter was removed about 2 weeks after my hospital release the Dr. first warned me that I may have trouble urinating. As he removed the cath we were greeted by a urine fountain and I said it doesn't look like I'll have that problem.

Control began to return slowly and when I returned to work in June, I was able to manage with a Depend and an additional guard and had to change 2 to three times per day, even when going to urinate every 1 - 2 hours. Over the next few months that began to gradually reduce until the point where I was comfortable using the pad only, although I still had to change the pad at least once, it was not totally soaked. That continued to reduce until I didn't have to change the pad at all and was really pretty dry during the day. I then found a thinner better shaped pad by Tenna to switch to which was much more comfortable and protective (wide near the top) than the heavy Depend pad.

As my daytime leakage continued to reduce and I could increase the time between bathroom visits it seemed I could now reduce the pad again and found a very thin pad by Attends (had to internet order) which is very comfortable. I switched to that one about a month ago.

Currently, during the day, I only use one thin pad during the day and have only some very minor leakage, some of which is because I will many times wait until I can feel some before going to the bathroom and can, if sitting hold off for up to four hours.

Nightime is another story and maybe it depends on how you want to define continence. My current situation is that if I get up every two hours to 2 1/2 hours then I have no leakage. When I sleep beyond that I have a problem ranging from simple wet pads to leaking on the bed. I have just started to sleep longer befor getting up (up to 4 hours)so I am going back to some protective bed pads for a while until the neobladder can hold the additional volume for a longer period. I do view the longer sleep period as beneficial. I note that even when I have the problem, I still have a significan quantity of urine to void and that would seem to confirm to me that it is a capacity issue.

That is where I am currently. Just getting to that point at night was difficult. For about 5 months after my release I slept on a recliner covered with absorbant pads, on my back downstairs. Nighttime control does seem to come very slowly and that was not something I was really told about.

I tend to track progress in my reduction in pad size and usage. As long as I seem to keep progressing - however slowly, I can accept it.

Carb,

If your husband has been doing the kegel exercises multiple times a day he should be seeing some improvement versus day one. If he is doing the kegels daily and often and is not seeing improvement, he may have the same issue that Mikeg stated in an earlier post in this thread. That is, his pelvic floor muscles may be too tight and he needs to learn different exercises.

When I first went back to work I wore the depends pads www.us.depend.com/Incontinence-Products/ProductDetailMaleGuards.aspx in my briefs. I have no idea what your husband does for a living but it seems that should hide any incontinence issues he is having. If the pads are not enough, then using the depends briefs in addition to the pad should do it.

Of course if one's job was a Chippendale's dancer, that probably wouldn't work out to well.

There are a lot of people out there who are incontinent due to other reasons and they wear protection while at work.

When he goes to the doctor, he should tell him how often he is doing kegels, how much urine output he has when he goes on schedule, and how much leakage he is having between scheduled trips to the toilet.

I think that "normal" is a couple to a few months to get daytime continence but I think I recall seeing that 5-10% of male neobladder patients don't acheive continence during the day.

A "last resort" may be for him to wear condom catheters with a leg bag but I think it would truly be last resort. If he knows he has the catheter, it may further slow down acheiving continence.

Hope things work out soon.

Mike

Thanks for the response, I've read very few people taking this much time and still having such little continence, do you know of anyone who didn't get continece, and any treatments or temporary tips to get by. My husband has a hard time going to the store right now and has to start work within the month. We are not sure how he will be able to do this with his almost constant leaking with any movement. Do you know of any daytime devices on the market that work? We are trying to stay positive. Our Dr. gives us very little imfo and just tells us everything is normal. My husband was scheduled to start work this Monday and has needed to postpone it. We meet with the Dr. on Tuesday but I don't expect very clear answers based on past answers. I'm an r.n. and am trying to be assertive and I'm really struggling to find out how far off we are in comparison to a typical recovery. I realize everyones situation is different but I feel like we are way out in left feild and no one will tell us. I hope I'm wrong but it is frustrating when I really have no idea what normal is (except for the little information I find on the internet). We just want to know reality, what % of men are at this point 2 months post op. No one can give us a clue.It seems mostly women struggle with incontinece long term, most men seem to have some control by 2 months out. Any imfo would be greatly appreciated.

Mine got better a few months out and now I'm pretty much completely day-time continent.

I got so comfortable using condom catheters at night, I haven't really been working on or worrying about the night-time continence.

Mike

How is your incontinence now? How long did it take to get control? Did you have any additional surgeries? My husband is 45y/o & 2 months post op RC. He has very little control, we are hoping this to change by 3 months. Would love to hear how your recovery went long term.