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Nighttime Continence
4 weeks post RC with neobladder and doing pretty well I reckon. Daytime continence is not perfect but is improving and I am getting a feel for what is needed. Nighttime is a little different. I wear a pad, void before bedtime and have a drininking curfew of around 8 o clcok. I usually set the alarm for 4 hours after I go to bed but am awoken after 2 hours with leakage. After this I get up 3 or 4 times before morning and usually have to do a pad change or two. It doesn’t make for a good nights sleep and, despite me being pretty fastidious about washing my bits, its getting a little sore down there due to urine leakage. I am trying a variety of creams with varying results. I know there’s a lot of info scattered around out there about this but can anyone offer any tips here for beating nighttime wetness. Or lessening it! I know about the condom/catheter thingy but this just feels like a step backwards. And I want to move forwards!
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10 Replies
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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.
Tim
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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.
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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.
Tim
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Tim and others,
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,Lou
Ps. Tim I think it’s possible to get a lubricant that has a numbing effect, ask your doctors nurse about it.
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Hi:
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.
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Tim,
You are on the right track my friend… matter of fact doing GREAT at 4 weeks. Not sure when you hit the sack, but I was told to stop drinking @ 4 hours before bed. I was given one repreive, I can have a popsicle during that time. Just the single size and it’s very little fluid with a great thirst quencher. That’s been te hardest part for me.I started at 2 1/2 hour snoozes and built up to 3 – 4 hour. Dr also suggested increasing my salt intake at dinner (as long as BP is not an issue). Took a while but did very well for quite some time. I have to say that I am not doing so well right now but that is an issue with the bladder. Dr thinks that as it stretched to it’s current capacity I may have folded it over at the bottom. I am having issues getting empty but he’s going to look inside and see what’s happened.
Do the Kegels… they work. I’ve seen dozens of “Routines”. Gotta put my 2 cents in so… 3 sets of 15 squeeze, hold for 3, relax for 3. I was told a mild squeeze but prefer Lou’s 1-10 scale. Much better perspective for me!
Sounds like you’re doing GREAT!
Believe in yourself,
Mike
T1-G3, CIS
RC w/ Neobladder 8/22/06
Tim,
According to the doctor (she’s considered to be one of the best) I saw here in Birmingham in the continence clinic there is such a thing as doing too many kegels, which means your pelvic floor muscles could be fatigued. That could factor into your night time continence problems. I was told to do one five minute session a day, and that is with the ten second hold. Another issue about kegels is how much you tighten the muscles each time, and my instructions were when considering a scale of one to ten I was to tighten to a level three. You keep the level three forever, you do not tighten more thinking that is building muscle because it isn’t. I could write more, but right now I have to get to an appointment. I hope this little bit of information might help, and when I return I will look for some of my other materials on this subject and let you know once I find something else that might help.
Lou Graham
Ps. I had extreme continence issues, if you get my drift.
im fine. just impatient! I’m doing what I think are the kegals every day whenever I think about them. Probably amounts to about 7 sessions of 10 fast and 10 slow but am also building it up slowly. As I said, I can already see the light at the end of the tunnel with daytime and Im sure the improvements have only just started. Im only four weeks out of surgery and already out and about doing short walks and mainly feeling pretty good (I have my off days too of course!)
Hi Tim,
You are not alone, that’s for sure. There’s a learning curve here that you need to go through and it takes time. We have a lot of guys who have been there, active in our discussion list (http://blcwebcafe.org/listinfo.asp), if you don’t get enough input here to help, please consider joining up and asking there.
I suppose you’re working hard on your kegals?
There is some discussion between members about regaining continence here:
http://blcwebcafe.org/neobladderdialogue.asp#neoqGood luck with things and please be patient. Don’t lose heart Tim, it will get better.
Wendy
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