Self Catherization. An on “on/off” strategy.
Posted , 29 users are following.
For those new here, three years ago I went into what can only be described as near chronic urinary retention where my bladder had lost so much tone that the only way I could void was to push hard on my abdomen (Crede Manuever). That meant I literally had to pump the urine out.
Not as many options then, and my doc suggested TURP, the only procedure his hospital performed. I ended up deciding against TURP and went on a program of self catherization (CIC) starting at 6x/day. My doctor said it was my choice, but unless I had an operation I would never be able to void normally without a catheter. He was wrong.
Three years later I am voiding normally without a catheter and for all practical purposes have almost no symptoms of LUTS/BPH. If interested, more details in the self catherization threads I started.
One technique I used as part of my bladder rehab process is for lack of a better name the “on/off” strategy. Actually in the beginning it was less of a pre-planned strategy and more of what I was doing, but then as results came, I made it a strategy. So here it is. YMMV.
Starting around the six month mark, I would switch from 4-6x daily CIC to either once or twice a day, or no CIC. Sometimes I stayed off the cath for a day, sometimes for a week, sometimes a month or two.
During the off the cath periods, I would assist my voiding sometimes with double or triple voids, easier voiding positions (reclined back in a chair) and at times some gentle Coude (mostly tapping). And very important, I would check my PVR's periodically via catheter to make sure my bladder wasn’t getting too stretched out. Void logs also helped in this regard.
Then, at a certain point, usually when I got fed up with the off the cath route 
, I would go back to an aggressive cath schedule of 6x/day for a period of time which was really much easier for me. Just cath and be done. No double, triple voids, etc. So that was the cycle, off the cath, then back on agressively. And then I would repeat. At one point I used daily Cialis during the non-cath periods but most of the time not.
My theory, and it’s only that, is that the on/off CIC helped my bladder rehab in the same way as muscle development is helped by hard/easy days or weeks. The time off CIC was the “hard” period that stressed my bladder muscles. The time back on CIC was the “easy” period that gave it a rest.
Obviously, if you’re not having any natural voids, or very little natural voids, this will not work. However, if you have a decent mix of natural versus cath volumes, you might give this a try. And again, can’t emphasize the importance of periodically checking your PVR through void logs and periodic reality checks of self cath’s during the “off” period.
Alternatively, you could check your PVR at any point in time with a home bladder scanner which I didn’t have then, but have recently purchased.
Jim
4 likes, 136 replies
mike588 jimjames
Posted
I'd like to thank Jim publicly, he has helped me a lot with advice and support.
I have a good Urologist that taught me how to self cath and encouraged it after surgery.
It's a great tool to have, I'm getting close to the point where I can start the on/off strategy. Unlike Jim I did have surgery so my case is different I commented in other discussions on FLA and maybe Rezum - I did FLA about 3 months ago, it worked although I still need to take Flomax. I did PAE, a total failure which I would not recommend as it's hit or miss. Because I was in such a bad state when I did the FLA most likely that hindered my recovery somewhat, hence the self cath strategy.
jimjames mike588
Posted
Happy to help. As we discussed, ease into it. First just try reducing your cath frequency. And again, do frequent reality checks with the cath to make sure your not holding too much.
Jim
bob31550 jimjames
Posted
Re "too much": Wouldn't a bladder scanner be a necessity?
jimjames bob31550
Posted
Hi Bob,
Not sure which post of mine you are referring to but bladder scanners are not a necessity if you cic, in fact if you cic on a regular basis you probaby don;t need one. The reason is that when you CIC you always know your residual so you don't need a scanner. Where scanners are useful is if you're not doing cic, or not doing it on a regular basis and therefore want to know when you have too much urine in your bladder. Bladder scanners also can be helpful if you have an overactive bladder and you can then use it for bladder retraining.
Jim
Howard31850 jimjames
Posted
Just want to comment here that I would not have a prostate today had it not been for jimjames introducing me to CIC a year ago.
At that time I was facing a robotic simple prostatectomy the end of June. Instead I opted for PAE as a quick fix to my BPH problem and lived on prednisone until the procedure in the summer. I had got caught up in all the enthusiasm over PAE as a panacea for BPH. But even though I was considered an ideal candidate it had no effect on my symptoms.
I refused all transurethral procedures because of the many side effects that have been reported over time. And I was too big for less invasive procedures like urolift, rzum, iTind and others.
So last Fall with the help of jimjames I made a decision to master CIC to give me back control of my bladder until such time that another minimally invasive procedure becomes available in the future.
While I do suufer from AUR from time to time, usually caused by "holding it in", CIC has dramatically improved my quality of life. In fact a recent ultrasound showed that the stress seen on my bladder/kidneys a year ago has disappeared.
Generally I cath 3 to 4 times a day and have a reasonable NV in between of around 150ml.
I've had BPH for over 20 years and have been on dutasteride and alfuzosin for 10 years though now I am weaning myself off of Avodart since I have control of my bladder.
I am familiar with FLA and Dr. Karamanian in Houston and have visited him. While he is a wonderful and capable VIR, FLA as used for BPH is new and its mechanism of action is still conjectured so it may be an option for me in the future but not now. That is the "beauty" of CIC - it buys us unlimited time to wait for new proven procedures at minimal cost.
My prostate and I thank you Jimjmes!!
Neil
mike588 Howard31850
Posted
Neil,
Great to hear, since you visited Dr K I believe he has done more BPH patients. I think I am the single only one where he could not say with 100% certainty that it was a total success, and that might only be because of my unique situation before I had the operation. mechanism of action "conjectured"? what do you mean by that? FLA uses a laser to kill tissue obstructing the Urethra, how can that be "conjecture" ? I tried Alfuzosin it lowers my blood pressure and makes me feel tired, prefer Flomax - I'm hoping as bladder comes back I can stop Flomax.
but yeh CIC is a great tool overlooked by Urologists when discussing BPH.
jimjames mike588
Posted
Hi Mike,
I know Neil started it, but so this doesn't end up being a Dr. K. thread, maybe move that part of the discussion over to the FLA thread(s). Also, I think a lot of FLA potentials will not see your comments here and btw your situation isn't that "unique". A lot of men considering surgery have compromised bladders. That said, we're all pulling for you, and from what I know you still may end up a success story. I was able to pull it off eventually without surgery so hopefully you can too with.
Neil, thanks for the nice words.
Jim
Howard31850 mike588
Posted
Hi Mike,
I know jim wants to move any FLA discussions over to that thread but I will just answer you question here. DR. K explains his procedure as cauterizing excess tissue around the constriction to relieve pressure on the urethra. He then explains that over time the prostate should reform in such a way as to prevent further tissue growth from compressing the urethra. But this is pue conjecture as there have not been any long term studies to demonstrate his theory. Nature always has a way of thwarting our best ideas in unforseen ways. So until I can actually see evidence in the form of MRI imaging over time that demonstrates this mechanism of action I do not want to subject myself as "test subject" to the procedure if I can still manage with CIC. This comment in no way detracts from Dr.K's genius and talent and how can you not just admire the guy. But hoping and wishing doesn't make it so always.
I am glad for all the guys that have had short-term relief from their symptoms but we still have no idea how durable it is and what the longterm unintended consequences of this new procedure are.
If I sound skeptical it is because I have been burned too many times by following the latest and greatest procedure of the month. So it is CIC for me right now!
Good luck to you.
Neil
All the best to you
Trustme Howard31850
Posted
mike588 Howard31850
Posted
thanks for explaining, sorry Jim didn't mean to get off topic :-)
Howard31850 Trustme
Posted
The only success has been CIC.
Neil
stebrunner jimjames
Posted
Hi, Jim,
Not sure how you decided the timing of going off CIC for periods of time. My NVs were increasing and got up to 140 to 200 ml prior to having my bladder stones removed. Since those were removed 3 months ago my NV volumes have dropped to 50 to 100 ml on average. On occasion, I have NVs of 110 to 140, but that only happens when my total bladder volume reaches 400 ml or more. I've been doing CIC for a little over a year now. Now that it's become so much easier in the past month or so, I consistantly CIC 6 x per day. I guess I don't feel comfortable stopping CIC for periods of time until my NVs increase. Your thoughts?
Stebrunner
jimjames stebrunner
Posted
Hi Steb,
First, glad to hear that CIC has become so much easier for you. As I've said before, you had me a litle worried back then.
It was less of a plan for me and more what I did. The theory of hard and easy period was therfore somewhat retrospective although. The reason I went off the catheter for period of time was as simple as seeing if I could function of the cathteter, if that makes sense.
In your case, I wouldn't go off completely, but you could try a day or so of going from 6x/day to maybe 2 and see what happens. If your PVR is too high then go back to 6. You could be more conservative and go from 6 to 4 initially. And again, I'm not saying go off the cath, just temporirly going off or reducing CIC frequency. It could be as temporary as a day or a week or a month. You have to follow your body.
The other aspect of it, were the techniques I used during those times to empty my bladder down as much as I could. To compensate for decreased freqency, I double and triple voided, used some Coude and used the reclined sitting position. Some of these may work for you, or not. Or maybe you will find other ways. It was a bit of a PITA doing that part with lots of smaller voids but the effect was to get my PVR down to acceptable limits.
So that's the downside if you want to call it that. More time and some more discomfort and proably less sleep. As mentioned, I also tried daily 5 mg Cialis for some of the cycles initially but then I didn't.
I also think there may have been a mind/body thing going on. In other words getting the body to understand that it's not going to have this "crutch" anymore so it had better take over! That combined by my creeping belief that I could cure myself. Not sure how scientific the last two things are but I do believe in both the mind/body connection and the power of positive thinking and that in some caaes, to some extent, we can heal ourselves. Or maybe that's just a retrospective observation on what happened for other reasons.
Anyway, that's what i did and wanted to pass it along.
Jim
jimjames
Posted
So again, the "off" periods were like getting home with a sprained ankle, limping instead of walking. Instead of walking continuously, it was a series of limps and rest add thenl limping a little more. The idea again was to knock down my PVR little by little (multiple voids) any reasonable way I could think of. If I remember correcctly, I also dropped my fluid intake to probably no more than six 8 oz glssses of fluid a day. Those periods were not fun at times and could be hard work. The releief came when I went back to the 6x/day cath schedule. Never appreciated CIC so much as then! But eventually the down periods became less troublesome and today I'm in my longest down period, over 4 months thereabouts. And very few double voids, and I think I only used the reclining position once or twice. Occasionally, I find it hard to start the process (some pain) and that is usually associated with a very full bladder from perhaps too much fluid or unevern kidney unloading. But I found I can take care of that by walking around some or doing some keep knee bends. Had I discovered this earlier I might have had longer off periods back then. But that's just occasionally now. Most of the time I go about my day normally with no pain or urgency. Even "pee like a horse" (more like a Pony) every once in awhile.
Jim
mike588 jimjames
Posted
Jim,
Did you ever look up medical literature regarding this topic? Specifically "retraining" the bladder etc. ?
And Stebrunner maybe I missed other discussions, besides kidney stones why are you doing CIC ? 6 times a day sounds like a lot!
jimjames mike588
Posted
Hi Mike,
Nothing that I've read except short term rehab/decompression prior to a prostate reduction surgery such as TURP as a prerequiste for a qualifying urinalysis testing. But nothing longer term. In fact, two "eminent" urologists told me basically to "forget it, it won't bring back your bladder".
Jim
stebrunner mike588
Posted
Hi, Mike,
About a year and a half ago, I had AUR, and at the hospital they drained 7 liters out of my bladder. Yes, 7 liters! Up until that then, I experienced no pain, and voided as usual, only my stream being a little slower. I almost lost my kidenys from the AUR. The uros told me my retention must have come on slowly, otherwise I would've been in a lot of pain much earlier. And they told me I would never regain bladder function.
I've seen 7 uros since, including 2 at the Mayo Clinic. Each said I'd might be able to void if I allowed them to do their surgery, including robotic suprapublic prostatectomy, TURP, and HoLEP. Whenever I pressed them on the odds of the surgery working, all they backpeddled on their claims. I started CIC--and after I had PAE done, I was able to start voiding naturally some on my own. It's not enough to drain my bladder at present, so I'm hoping to use some of Jim's plan for bladder rehabilitation.
BTW, I chose PAE because it was one of 2 options that would work with the size of my prostate. Because I have a large median lobe, I knew it may not make my NVs better due to my weak bladder tone. PAE did stop my prostate from growing and made CIC easier for me. I will continue with CIC until the right procedure comes along. FLA and Gat Goren look promising, but CIC gives me time to research their effectiveness. In the meantime, CIC allows me to live a normal life.
I understand why many men won't consider CIC. After my hospitalization and 3 months with Foley catheters--and the associated pain, I thought there was no way I could catheterize myself. Then I finally found a urology staff who knew something about CIC--and this forum--and mastered it. I've learned so much about CIC from this forum that I probably know more about it than my uro's staff!
My current uro, who wants to give me a series of 2 or 3 TURPs to reduce the size of my prostate, is surprised at the progress I've made. I am, too! I owe it to myself to try Jim's method to rehab my bladder. It may or may not work, but it won't damage my body like a series of TURPs.
And so far Jim's method has helped me a lot. Prior to PAE, I could on occasion naturally void 10 to 20 ml. After PAE, I could consistantly naturally void 30 ml. I kept to Jim's guideline of keeping my bladder total volume under 400 ml, and then got to natural voids of 170 to 200 ml. Unfortunately, I had a setback after they removed my bladder stones, and my natural voids have dropped in volume. I am hopeful that I will regain the ground lost.
Sorry about this long answer to your question!
Stebrunner
jimjames stebrunner
Posted
Steb,
There could some inflammation left over from your stone surgery. In any event, I haven't found progress linear but more up and down. You have good reason to believer you will get back to your previous NVs and even better!
Jim
mike588 stebrunner
Posted
Thanks now I remember your 7 litre bladder story, when I went into UAR I think I had 500 or 600 mils and felt I was bursting and in agony I can't fathom 7 litres are you saying 7000 mils ?
My NVs similar to yours with ups and downs for different reasons. Last night as an experiment I did not do CIC, I think because of that I got up a few more times than normal. On the other hand this morning PVR was only 90 - I've been doing CIC for about 2 months (after having Foley 7 weeks) and usually PVR over 200 so hopefully progress is happening - I might try next just once at night time so I can sleep better and see how I go. Periodically check during the day like Jim says, or buy a scanner :-)
mike588 jimjames
Posted
It's interesting, could be they went by certain studies and until a new study comes out showing otherwise they rely on that information. My Urologist and his PA seem to have a different view, in the sense that bladder can "come back" and that CIC can help, but he did tell me specifically "don't believe all the stuff you read about bladder retraining it's BS". Next time I see them I will ask again.
Howard31850 stebrunner
Posted
I often find that I get irritation for various reasons that reduces my NVs a lot ( from say 150 down to 50). I take 2 AZOs for bladder irritation twice a day for 2 days and everything returns to normal. In the past I have mistaken these irritations for UTIs. The irritations cause inflammation and this is an easy way to treat it - maybe it will help.
Take care
Neil
jimjames mike588
Posted
I don't think there were any studies because this isn't an area that interests urologists that much from a financial point of view. "Bladder retraining" is a very broad term so not sure what your uro means, but again, I've had eminent uros tell me that it would be impossible to accomplish what I did. One of my recent uros, confronted with the reality of what I did, simply said something like, "you're very lucky, this is unusual". Another just listened and said nothing. It's just not in their universe of their cook book recipe practice.
Jim
zdzislaw Howard31850
Posted
stebrunner zdzislaw
Posted
Hi, ZD,
AZO is the name of an over-the-counter medicine that contains phenazopyridine hydrochloride. It helps relieve urinary discomfort from things like UTIs. It turns your urine bright orange. I've often used it following urinary procedures like when I had my bladder stones removed and my urethra was super inflamed.
Stebrunner
zdzislaw stebrunner
Posted
Thanks! Sounds interesting. I am in Europe, so the name won't be the same.