Second TURP

Denkee, I'll see your 1,600 cc and raise you 900!  They drained 2.5 LITERS outta me when I started on this journey.  Because of permanent damage (stretch out) to the bladder, I self-cath 2 x each day, at noon and before bed.  Otherwise pee normally, but to avoid complications in bladder or God forbid, the kidneys, I cath to clear out the residual liquid.  My stretched out bladder can hold as much as 800cc without complaining to me about it!!!!!!   Am currently trying to re-train it to speak up earlier/more frequently....

Fold. They were only able to drain 1.5 liters out of me after I naturally voided (with the aide of palm pressure) 400cc!

I have been relatively successful in bladder rehabilitation, and now only have to cath after periods of inactivity such as sitting for long periods of time, napping, sleeping, itself. Other than that I can now empty my bladder down to under 50cc (and always under 150cc) almost all of the time. 

Never know, but I think my success in part was at one point increasing my cath schedule to more than is generally recommended. The general recommedation is that if you cath more than 400cc, increase the schedule. I increased my cath schedule so that my total bladder volume never exceeded 400cc. By that I meant the total volume of my natural void plus whatever then came out with the catheter. So, while I probably only needed to self cath a couple of times a day by the conventional standard, I upped it to six times a day. 

Of course, I can't be sure, but I think that doing that over many months speeded up my bladder rehabilitation by giving the bladder even more rest and less stretch.

At times, even now, I have gone back to this more agressive schedule when I feel my bladder has lost some tone.

Something you might want to try. 

Jim

I'm interested in what you can do to retrain your bladder.  Thanks

How did you go about rehabilitating your bladder?

I think "rehabilitating" is probably a better word than "retraining" which you used in a previous post, as retraining tends to refer more to decreasing urinary frequency (over active bladders, etc) but what many of us here are dealing with are atonic/flaccid (stretched) bladders which can make complete emptying impossible, even if the obstruction is removed by surgery. That's why some who have had surgeries, including TURP still have to self catherize after. 

The idea behind bladder rehabilitation is to give it a vacation so to speak so it can regain some of its lost elasticity from being stretched out in many cases for many years. 

My bladder was so stretched out prior to self catherization (CIC) that they drained 1500cc out of me after a natural void of around 400cc. So I was walking around with close to 2Liters of urine probably for some time. 

Bladder rehabilitation is often used before operations like TURP both to see if they will be effective and to produce better results. What's the point of getting a TURP if you will have to CIC anyway?

The usual convention is about six weeks of a Foley. In my case I chose six weeks of CIC. 

After six weeks of CIC I had a urodynamic study that showed I would probably have a sucessful TURP given the present state of my bladder which had been rehabilitated somewhat from the CIC due to the fact that I was emptying it on a regular basis so it was in a decompressed state a lot of the time as opposed to being stretched all of the time as it was before.

I decided to pass on the operation, however, and continue with CIC. I did ask a couple of urologists if I ever could rehabilitate my bladder to the extent that I could stop CIC and just urinate naturally with acceptable residuals and I got firm "no's" from all of them.

While I can't say at this point they were 100% wrong, I can't say they were 100% right. In fact, I'll say they were more wrong than right with me. 

After about a year and a half of CIC, I noted significant improvement in my natural voiding. So much improvement that in the past few years there have been times where I have stopped CIC altogether for periods as long as 4 months. AND with very acceptable PVR's as measured by ultrasound in my urologist's office. Usually 50cc or less, which is better than most TURP results, according to my urologist. 

Today, I only need to self catherize if I have been sedetary for some period of time. That could be lying down, taking a nap, or a middle of the night thing after sleeping. Not sure exactly why this is but I have heard other similar stories where urination is harder after being sedetary. 

What I've found is that if I then walk around for 10-20 minutes, things go  back to normal and I can get a good normal void. So, for some time, that was what I did, and during this time I did not self catherize. 

Lately, I gave in to expediency, because walking around for 10-20 minutes (especially in the middle of the night) can be a bit tedious as opposed to CIC which takes me literally 2 minutes from start to finish without any pain or discomfort at all. Its really like brushing my teeth at this point. 

How I got to this place defies the assumption by my (and many urologists) that bladder rehabilitation will peak in six months to a  year. In other words, no progress after that. In my case, I continued to make progress beyond that time to the extent that the last couple of urologists I saw said they haven't seen anything like this type of rehabiliation in all their years practicing. 

My guess is the reason they haven't seen it is because they don't prescribe it CIC very much long term, they just operate!

As to my approach to bladder rehabilitation, I simply upped the CIC game and increased the frequency of my catherizations more than I needed to based on current guidelines. Current guidelines say only increase the frequency if you cath 400cc or more. What many of the guidelines fail to take into acount is the urine that many can expel prior to CIC. So by the guidelines, I might only cath 300cc which means not to increase the cath frequency. BUT if I naturally voided 200cc prior to that, then in effect I was walking around with 500cc in my bladder keeping it in a somewhat stretched position. 

I changed the frequency so I never carried around 400cc at any time. Again, the idea being that the more decompressed the bladder was the more chance it would have to regain elasticity. 

Lots more, but that's the story in a nutshell. All our bladders and prostates are different so not sure this will work with everyone but I'm sure I'm not the only one who could rehab their bladder to this extent. 

Jim

Apologies for taking this thread off topic with the lenghly discourse on CIC, forgot which thread I was in for a minute!

 Probably better to direct any more on this topic over here: https://patient.info/forums/discuss/self-catherization-an-alternative-to-turp-greenlight-holep--336874

I will copy and paste my previous response there as well. 

Jim

The cath thread (above) is rather large and unweidly, so here's a direct link (hopefully) my response on bladder rehabilitation via CIC. Best that responses to this topic be answered there and not here:

https://patient.info/forums/discuss/self-catherization-an-alternative-to-turp-greenlight-holep--336874?page=2&order=Oldest

Great post.  Thank you.  I got to the point where I couldn't void at all (zero) for almost 3 days.  So i had gone in to acute retention.  They also took out 1500cc's and the bag was filled w/ 400cc's more when i got home.  This was in July of '14 and i am still in retention.  I had the Foley for 2 1/2 monthst prior to learning CIC.  I then had the PAE after 14 months and it only helped a little (better than nothing - but not nearly as good as some of the results I read about here.  The radiologist said that it is tougher to come back after going in to retention.  My natural voiding is usually less than 50cc's and never more than 120cc's.  The urge usually goes away for a few hours but then comes back strong until I cath again. The natural voiding definitely gets more difficult/strained as the day goes on regardless of the cathing routine.  Maybe I'll try cathing more and see if that helps "rehab"' in the long run.  Worth a shot.  Thanks again for the post.    

Arlington said:  The urge usually goes away for a few hours but then comes back strong until I cath again

-----------------------------------

So how much comes out when you cath? If you don't know, get a 500 ml (2 cup) plastic measuring cup and start a log. I think I was maxing out at 150cc for natural voids during my first year. Over the past couple of days, I did two 400cc natural voids. Personal bests!

Jim

My cath volume is between 150 and 700 cc's (but usually between 200 and 500 cc's).  It is greater as the day goes on because my natural voiding becomes more strained.  Although it's been 20 months since I went in to acute retention, I'm only 7 months post PAE.  Maybe my natural voiding still has a chance to increase with a rehabbed bladder.

I would increase/adjust your cath schedule so you never have more than 400cc of urine in your bladder at any one time. So that includes what you cath plus what you urinate naturally. Therefore if you naturally urinate 100cc and cath 400cc, you're holding 500cc. Too much. I know it's hard to make exact adjustments because sometimes the bladder fills faster than others. That's when a urine output/fluid input log comes into play. You start to see patterns. If you have to err, err on the side of cathing too many times a day rather than too little. Your bladder will thank you for it. 

Jim

Arlington, I want to second JimJams' assessment and recommendations.  I too am attempting to reduce retention amounts, with 400cc as my cathing goal.  With noon & bedtime cathings, I still have higher retentions often.  I keep a "Pee Log," to monitor cath volumes.  It doesn't matter how much goes in; it's more a question of how much is sitting there, keeping that poor old stretched-out bladder stretched out!  

The challenge is, that my own body signals don't kick in until the bladder is more full than I'd like, usually more than 500cc retention.  I am on a self-devised program of "rewarding" my bladder when I get the urge, by immediately voiding, such as it might be.  Less is still better than "ignoring until I REALLY need to pee," I figure.  I've been doing this only for three weeks; improvement will come slowly, I've accepted...

When I set my goal at 400 (natural plus cath volume) that was an outside figure. Often I would be carrying no more than 200-300cc when I cathed. Forget "body signals" just cath more often. I also think that the number of times you give the bladder a complete rest each day helps. And by complete rest I mean zero cc's. Of course you don't stay there long, but I think upping my cath schedule from 2-3 times per day to 6 may be why I progressed so fast. 

Jim

Well, it does make sense, what you are saying.  In my case, from August of 2014 until I had the Uroilift last December, about 15 months, cathing was the ONLY way I could release pee.  So during that time, I cathed FOUR OR FIVE TIMES A DAY, every day.  Even so, my bladder seemed "happy" to carry 500cc or so through the wee hours of the night without waking me!   

Now, it's just maintenance with the vague hope (I am still an optimist at 66!  :-)  )  that cathing will prevent back-up into the kidneys and provide some bladder rest....   :-P

Thanks a lot.  Good luck!

thanks

I found that after several months on the 6X a day schedule, my bladder  "notified" me it was full at lower volumes. This is  good thing because even when I stopped using the catheters, I would get the urge around 400cc and then empty down to usually 50-100. On the other hand, if the bladder notifies you at 500 or more cc's, you're walking around with a stretched bladder a lot of the time. I doubt very much this would put you in any kidney danger (back up, ie hydronephrois), because even a moderate schedule of self cathing should get rid of that in a week or so. But if you make a real effort beyond that to keep your bladder relatively over a period of 6-12 months, you might notice significant improvement in natural voids, retention, etc. At least I did. I don't think your post Urolift time was a good test because it was too early and you were probably too raw. I didn't start getting results until my second year. 

Jim

In a way it's counter intuitive. We feel we are making progress when we decrease the frequency of catherization, not when we increase it. I felt that way for some time, and it took a leap in something or another for me to up my frequency even when I really didn't need to.  The six (or even more) times a day isn't forever, maybe just six months or so until you give the bladder a chance to make real progress. If it doesn't, no harm, you can always go back to the old schedule. But if you notice things getting better, then that will give you motivation to either keep going, or if you're happy with the level you've achieved to pare back some.

Jim