Life On catheter

Nktornto,

Let me offer you an alternate evaluation of your urodynamic test based on my experience. YMMV.

If memory serves me I was around six months into a  self cathing program that I initiated against the advise of my uro who wanted me to have a TURP. 

Because I was self cathing, I knew very well my real world retention which was at that time probably under 200ml (now it's often under 50ml). I also knew the point at which I felt the urge to urinate which was when I had around 300-400ml in my bladder. This is also an important measurement of the urodynamic test.

So the urodynamic technician starts filling my bladder and filling my bladder and filling my bladder, all the while via protocol, asking me to tell him when I feel the need to urinate. Well, I felt nothing but given the amount of time I finally asked him how much he was loading me up with and he said he was close to 1000ml when I gently said, "please stop"! And, of course when he told me to empty my bladder, it was so stretched that my retention was probably 800ml!  So these are the figures he wrote down. And, of course, these figures, combined with the high pressure readings dictate the recommendation of an operation to remove the significant blockage and cure the significant retention.

Problem is that these numbers have little or no correlation to how my bladder was operating in the real world. In the real world, with my normal fluid intake, things were not nearly as bad. Again, I felt the urge to urinate at around 300-400ml (not 1000ml) and my retention was closer to 200ml, not 1000. 

Not saying urodynamic testing can't give some useful data as to pressure and nerve health, but I wouldn't rely on it for any data on the urge to urinate juncture and retention. Typical ultrasound void testing in the hosptial is equally unreliable. Both can significant overestimate retention with in my opinion many recommendations for unecessary operations. 

Jim

Not a doc, but my impression is that urodynamics are good for evaluating if retention is caused by nerve damage versus obstruction, ie an elarged proatate. That said, I think in most of our cases we know that answer already! As far as testing the bladder muscle, I would say that there are very few false positives but a lot of false negatives because of the artificial fluid loading. There is also something called I believe a video urodynamic test that shows more but I still think it would give false negatives leading to many unecessary operations in my opinion.

In terms of real world bladder functionality -- better  than urodynamics or the typical void test would be to simply have your retention measured by your doctor in his office using a portable ultrasound scanner. The key here, however, is not to fluid load prior to the test, but to be tested based on your normal fluid intake. This may take a little patience both with you and the doctor while waiting to urinate but it's the only way -- short of self catherizing yourself at home -- to get an accurate real world retention.

Jim

Neil,

A real cautionary tale! I wonder how many thousands of people didn't have your knowledge/wits (and guts) to say no the operation. So many just follow their "eminent" doctors blindly figuring that with their reputations they know what is best for you. 

Jim

What was the reason they wanted urine output from you?

Jim

Neal

I had sepsis and they wanted to see if the infection was in the urine.  At the time I did not need to go but they said that I should be going with 2000cc of fluid that they gave me. The doctor told me that I have something wrong with my bladder or kidney   They try to catheter me 3 times.  2x in the ER never even asked and when I went to my room 3 nurses try to put one in.  Even when I said no.  The RN said they did not hear me.  Now when I go I carry a file with me that has all my information.  You don't have my permission to do anything unless you get my persmission  After I got to my room  I peed on my own a hour later  Ken

Hi Kenneth,

Well, now it makes perfect sense. So the docs need a urine sample for some testing but at the time the nurses arrive the patient can't produce a sample. So they have a couple of options:

Option 1: Excuse themselves and tell the patient they will be back in 30 minutes so the patient can try again.

Option 2: Tell a patient with perhaps an already compromised bladder to force down a half gallon of fluid. When the patient still isn't able to urinate (because their bladder is now artificially pumped up like a balloon which would make urinating difficult for even a race horse) the doctor makes a spot diagnosis based on lack of knowledge of how a compromised bladder functions and they try and catherize patient TWO TIMES in the ER without asking and then ONCE AGAIN back in the room against the patient's wishes. (Maybe they should watch a YouTube video on how to insert a catheter or read some of the posts here?)

Option 2 is why unless it's absolutely necessary, try and avoid going to a hospital. But if you do have to go, try and have a knowlegeable advocate with you and/or take Ken's advice and make sure they know they don't have permission to do anything to you unless they have your permission. A good attorney on speed dial also isn't a bad idea.

Jim

Thanks Jim - my warning to all men is to resist tests recommended by the uros unless they are totally benign tests. They wanted to do another one to me that measured the detrussor muscle tension. It was totally medieval.

I just read some research papers by "eminent" uros that said atonic bladders cannot be reversed by self-cath because once the collagen forms in the smooth muscle walls it cannot be removed. They need to read this Forum!! Neil

My "eminent" urologist told me the same thing. I no longer see him, but have been tempted to make an appointment, let him bladder scan me in his office, and then tell him what he told me a few years back, which was something like, "yes, when pigs fly you will be able to empty your bladder without an operation or a catheter". 

BTW if you have a link to that research paper can you post it or send it to me via PM. Thanks.

Jim

My first catheter stayed in for 3 month since I had complete blockage. Urologist Removed it to see if I can pee.

Within 2 hours, I was restless, wanting to go pee but not a drop came out. Went to Er. By the time they put in a new catheter 5 hours had

passed. Urine drained in the bag was only 200ml but I had my bladder pushing and I was in pain in the last hour just wishing the catheter in to Drain.

What does that mean? My bladder is weak? Your urologist can shed light on this?

Hi Jim,

You can access the paper on PubMed - it is free to download.

The title is "Effect of partial bladder outlet obstruction and reversal on rabbit bladder physiology and biochemistry : duration of recovery period and severity of function", 2014 BJUI. Authors M. Jock, ....R.M. Levin.

 By "reversal" they mean CIC. Please see last paragraph of summary at end on page 953 which states that jimjames must just be imagining the whole thing! Neil

Hi Neil,

For some reason, I'm not getting a "summary" on the full-text portion, do you mean "results"? If not, maybe you can just copy and paste the paragraph in question. 

In any event, interesting but not convincing. Might have missed some stuff with a fast read but sounded like their final evaluation was only 12 weeks out. My signficant improvement was after 52 weeks, so perhaps more time may be needed to see a decrease in collegen levels.  Also, it was probably too difficult to teach the rabbits how to self catherize, so we may be comparing apples to oranges or in this case rabbits to people

Jim

Hi Jim,

I meant the end of the Discussion section:

"To summarise the research experiment, the obstruction and

reversals of bladders have shown that some bladders regain

function while others will remain in a state of severe

decompensation. In most cases, obstructed then reversed

bladders will never regain full function and will instead

remain at some level of decompensation. It was shown that

collagen levels did increase while myosin levels decreased,

especially in the severely decompensated animals. One clear

conclusion is that if a bladder is severely decompensated when

reversals are performed, the bladder is incapable of significant

recovery, as indicated by the contractility and collagen levels.

Even if the smooth muscle recovers, it cannot overcome the

inhibition of contraction mediated by the increased content

and distribution of collagen [19]. This has important

connotations in men with severe obstructive dysfunction

secondary to BPH. Pharmacological treatment at this level of

dysfunction may be detrimental as severely decompensated

bladders do not seem to improve, even if the duration of

recovery is longer. "

I do have another study that shows how similar the rabbit urinary system is to ours - go figure. Anyway you have proven the point and no rabbits were killed!

Neil