3 Months = Undetectable; Notes on Incontinence Trial

At the 7 week mark, I visited the "Fellow" doctor running a "weigh your pads" trial to track incontinence. At that time I was leaking "a little over a pound" for 24 hours, while the average guy was running about 3/4's of a pound. At that time the Fellow said they were seeing the most dramatic improvement between the 3 and 6 month marks.

Yesterday I went to see my primary surgeon who is running the Fellowship. At the 14 week mark (13 weeks post catheter) I was 615 grams - which is 1.35 pounds. Zero progress in 7 weeks. I am off the charts. He says he has one other patient who is in my condition - meaning the other 99% of his patients don't go though this. (I don't know how his patients equate to the trial. Are all the trial patients his? Or do they include the other 4 or 5 surgeons in the practice?)

But - yesterday was possibly the WORST day I have ever had with incontinence, so maybe I am doing a little better than the results indicate. I was a soggy, miserable mess all day yesterday and I have no idea why. I am a slender, high muscle tone, former track athlete with a physical therapist for a wife. Over the past 27 years - for a variety of reasons including class demostration - I have flexed or twitched almost every muscle in my body for her - including some that most people can't move. But apparently I suck at kegels. I simply cannot walk down the hall and stay tight at the same time.

So I can proudly say I have used something like 637 pads in the 13 weeks since the catheter came out. Buy stock in CVS because I use their pads.

Life is good, just some days are better than others.

kcragman 

Kcragman...Though I am not a member of any trial I have been weighing my pads.  It seemed to me to be the logical thing to do rather than use the number of used pads as the traditional method of grading the "Big I."  The number of pads a person uses during a 24 hour period is directly related to the comfort level that person desires...i.e. how wet he can stand before changing.  I am at the 15th week since my surgery and started weighing my pads about 6 weeks ago.  I started out at around 900 net grams per 24 hour period stretched out over 4 pads.  I am now 300-400 net grams per day using 2 pads.  As one can readily see on a daily basis any progress or lack of progress is based on the actual urine deposits in the pads regardless of the number of pads.  I am presently working on one flaw in my system...that being the number of trips to the bathroom...it directly influences the total urine deposits in the used pads.  I have started using my cell phone alarm feature to program the time intervals so that variable will be eliminated from the system.  The most that I have been able to wait between bathroom trips is 90 minutes.  My goal now is to try to stretch my bladder to allow 120 minutes between trips.  I lead a somewhat sedentary life as I am afflicted with neuropathy in my legs as a result of my military duties in 'Nam.  So, I sit a lot...I do not normally leak while sitting but prolonged standing, walking and vigorous turning of my body will create a flow.  I am working on that with the kegels and just tending to my garden in short time allotments.  Also, I have difficulty staying dry while sleeping - everything relaxes including my bladder.  I haven't come up with a feasible solution to that problem...yet!

But, I will.  Good luck to you and have a bright, fruitful day.

Salty

Kcragman...I know exactly what you mean by good days and bad days with the "Big I."  The trick is, I have learned, to fight hard for more good days.  I do it when I go to bed at night around 2300 to midnight and for the first couple of minutes I try to figure how to make tomorrow better.  Actually my thoughts start while I am showering and cleaning off the stench of the day and I say to myself how wonderful its going to be when I don't have to take these extra showers to clean off that bit that should have been dispensed with in the normal way.  I tell my wife that she has the cleanest husband around cause I never in my not- so-young life can remember showering 2 and 3 times per day over such a long time...heck of a life huh!

    Kc I normally sleep on my side.  Among my many afflictions was a 4-bypass about 12 years ago.  It has caused me to not be able to breathe too well while lying on my back for some reason so I normally turn over on either side to go to sleep.  Back in my rambling days when I smoked cigarettes heavily, drank booze just as heavily, and chased a lot of skirts I did not worry about the consequences so now I am paying the consequences.  It is logical to assume that sleeping on my side allows the bladder to drain when it overloads the capability of the pelvic floor muscles to hold it in.  So, I will have to learn how to sleep on my back again and allow gravitation to be in my favor.   Another day...another project - huh!

    You mentioned a rash problem.  I don't have one as such.  my problem is I get a terrific urge to scratch my balls caused from a fungus like ailment.  I suppose it could be considered a rash of a sort...my doc prescribed an ointment called Nystatin and Triamcinolone Acetonide Cream.  One application and its gone.  But its temporary because in a day or two with the wetness the itch comes back so I smack it down with another application.  This is a long standing problem though when the conditions are just right cause I had something like this back in 1951 in the Korean War when a shower was unavailable and absolutions were performed out of a steel helmet...but thats another story.

     Good luck Kc and may your grams be lessened in the coming weeks.

Salty

IsleofGough said...
I am Navy too (active). One thing doesn't make sense to me that you mention: weighing pads. I understand that everyone might have different individual preferences for when they change their pad, but I don't see how weighing the pad would control for many variables except in a very inexact research study comparing people not to themselves for improvement but to each other. How much you drink that day, how long between urination, how much you were sitting standing or lying, and a great many other factors should make pad weight a very very inexact study (even if you carried pads around during the day and didn't let them dry out - not something I would do). If, for instance, you were 100% incontinent. Your pad weight would correlate with how much you drank minus insensible losses. Until they have a better rating system for incontinence, I would just look subjectively at incontenence during different times of day.

Well, I defer to your expertise in the medical field in so far as your thoughts on controlled studies and agree to an extent.  However, on an individual basis I prefer to know the exact amount of urine I am putting out and I get that info from weighing my pads.  It is much more exacting than the number of pads one is using per day or the time of day or an estimate of how incontinent I am depending on the time of day.  There is a definite positive correlation, mental or otherwise, when one moves from pads that weigh 900 grams to pads that weigh 300 grams and, believe me, it is a wonderful feeling to know that one is making progress in the battle with Big I.  If, for no other reason, I recommend the use of a little $20 digital scale.  For those of you who by virtue of your jobs or other circumstances cannot timely weigh your product then, obviously, this system does not apply.

Salty