thanks for that andy. actually Ive found a pad that works fine and I'm experimenting with a variety of creams and powders! the wetness has improved somewhat at night and I'm expecting further improvements over time. thanks for your input on this topic.
One thought wrt the soreness that one of the gentlemen reported with the nighttime leakage. I was having trouble with none of the pads working well enough at night, so I boughta new set of briefs, and placed a pair of the depends pads in a v-shape, so that the elsatic held things in place to the sides, and the gel-filled absorbant pads sit in the front. It is quite a bulky affair, but works a treat for not leaking into the bed, and also for leaving the gentials dry when ypu do pee at night, before getting to the bathroom.
Thanks for your input lou and astronut and everyone. Lou, I do monitor my urine colour and it's pretty good generally. straw coloured. In fact I haven't had the darker colours since the foley came out. the catheters i use are Lofric Male and they have a built-in water soluble lubricant which is activated by squeezing a saline pouch that's also built in. all this can be done prior to opening the packet so it makes for a nice, clean cath. the pain i was getting on cathing is improving. i think the balloon foley thingy had irritated the top end of the urethra and it was maybe this that was a bit stingey as I cathed.
I agree with you on the "if it's draining something..." issue and I keep a close check. I tend to use the nurse's input as a guide and not the "tome from the mount". If there's one thing I've learned in the last 14 years its that you must take primary responsibility for your own health! I cath if I'm not confident about my output but so far cathing has only produced little trickles. so I'm fairly sure I'm emptying ok even though the stream is variable in strength. I also don't want to go cath-crazy which would be easy for me to do as I tend to be a bit paranoid.
I seem to drain mucous pretty well and it comes out quite nicely. Like you, I've had a few nasty infections and they really are extremely unpleasant things. I never realised you could feel so crap with a UTI. I had everything from delirium to weird night sweats, high temperatures and a total loss of interest in literally everything. I have a supply of antibiotics on standby now and monitor my temperature if I'm feeling a bit under the weather. I really don't want another as it really gets in the way of my healing agenda!
My daytime continence I'm happy to report is getting pretty good. I even went shopping today and apart from the odd little squirt I am staying quite dry during the day now which is way beyond what I expected before the surgery which was only a month ago. I went to the bathroom twice in the shopping mall which is what I probably would have done even before my neobladder. particularly with the BCG and all the other stuff I had to cope with. In fact, my bladder was quite hard to remove as it had become slightly enlarged owing to the years of treatments and was lodged in the pelvis.
Nighttimes I think I just have to be patient with. I am experimenting with all the "pant style" pads and have 4 brands upstairs which I'm testing. there's a massive variance in quality and effectiveness. But life has definitely improved since using these as opposed to the pad and underwear method. I can sleep through the leakage more and my partner and bedding are less affected. Even so I'd like to get to the stage where I don't need them and I still probably average 4 pees a night. I don't see much of an improvement yet.
I'm astonished how like regular peeing that peeing with a neobladder is. Out and about, even at this early stage I feel quite normal. I won't be hitting the dancefloor for a while yet but I'm in good shape I reckon.
Thanks for your advice on the kegels. I have taken my exercise down a notch or two since your last missive and things seem to be progressing quite nicely.
And I'll say it again; what an excellent resource this is. Full of helpful, kind people. I pop in every day and I always learn something new. and its great to have contact with people who know what you are going through. It's great.
Just want to make sure that when you cath you're using a water soluable lubricant like KY-Jelly. I must add here that your doctors nurse would be wrong to say if it's draining something then not to worry, you must watch the color of your urine. If it's light in color that's good, but if it's dark yellow or worse that is not good. This issue is related to being hydrated, if you drink enough liquid (specifically water) it will be a light color. But if your water / fluid intake is low it would be a darker color. Then there is the mucous in our urine and you need to make sure if you are producing a lot of mucous that you get your bladder as empty as possible. If you allow mucous to sit in your bladder it's possible for it to become a source of infection (per my urologist/surgeon), and as I think back to the horrendous UTI's I had last year (severe headache with 103 & 104 temps) I remember that I had been producing alot of mucous then and what he suggests is very possibly the reason for them.
Back to the kegels, there are two type of muscle fibers that are in use when we are working toward continence. One is 'slow twitch' the other 'fast twitch'. The slow twitch need the longer hold time for them to become stronger, and that is on a scale of 1-10 you hold at a level 3 for 10-15 seconds. For the fast twitch fibers you need the quicker time hold, which is again a level three and this time for a 3-5 second hold time. At each level I'd only do those 1 session for say five to ten minutes but not together, do one in the morning and one in the afternoon. The slow twitch fibers are the ones that help us hold our urine in most of the time, and the fast twitch fibers are for the times when one laughs or coughs or perhaps you lift a box or some such thing and thats when we learn how to quickly tighten before we do those activities (fast twitch fibers).
Hope some of this helps guys,
Ps. Tim I think it's possible to get a lubricant that has a numbing effect, ask your doctors nurse about it.
My surgery was on Aug.2 and its been 3 months and some days since. About the leakage problem at night. I am 64 yrs. old and before the operation I always had to get up at night to releave myself. But my doctor said that I would have to wake up in the middle of the night check and see about any leakage. At first in the first and second month when I woke up I had really filled the diaper up with urine and would change to a new one before going back to sleep. In my third month this let up somewhat. I would wake up at 3 in the morning and the diaper would be dry. No accident. Now in my 4th month it is really better. Only once in a while to I have and accident. It will all improve with time. About the irritation problem I don't have any suggestions. I do not have that problem. I use the wipes that are antiseptic to clean myself regularly.
During the day I wear the small pads for men. I time myself to go to the bathroom ever 2 to 3 hours to relieve myself. Occassionly you will have some leakage and will have to change the pad. All this will improve in time. The bladder has to be trained. Good Luck.
thanks guys and sorry to hear about your current issues mike. hope they get resolved swiftly for you. i'll carry on the kegels but also investigate some more effective dryness aids. i suspect my pants are a bit loose and my hospital issue pads aren't as good as they could be at keeping me dry. and any info you get lou would be great.
on the emptying issue, I've never had much specific information about ensuring its empty from the hospital. I just pee til it stops. it can be an on/off thing but usually the stream starts off (increasingly) stronger and then im pushing out small spurts til i can't anymore. i keep a rough mental tally of how much i've drunk and how much is coming back out and I'm satisfied that there's a reasonable corrleation. my surgeon also said that the neo he's constructed has pockets so I won't always get back exactly what I put in at the time.
my uro nurse seemed to think that as long as its draining something, then don't worry but look out for pressury aches and pains. i cathed the other night just to make sure I could (!) and not much came out. cathing is still a bit sore so I want to avoid it if possible til things have settled a bit more. Last night I awoke pretty wet on the 4 hour alarm and then went and voided a fair old stream of urine. I'm a zombie in the night and sort of half awake when it all happens.
daytime, I am getting a feel for how it will go and am quite confident it will work out. nighttime I'm a little more skeptical. we'll see.