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
Howard31850 jimjames
Posted
Hi Jim and everyone-
Just wanted to give an update on my on-off experiment.
It has been 9 days since I stopped CIC to give my prostate wound a chance to heal and avoid a Foley.
During this time I also stopped my alpha blocker (uroxatral) and Avodart.
My voiding ability has continued to be that of a 20-year old. It is as if I have had a BPH procedure without the side effects!
During the day I void up to 300cc at a time in maybe 10 seconds with a high-speed flow.
The only problem has been at night. Until a few nights ago my voiding was also excellent in the middle of the night. But 3 nights ago I started to have trouble voiding when I awake at 2 am. However as soon as I start my daily activities the flood gates open.
I restarted my Avodart 3 days ago as I want to avoid the rebound effect from the 5-AR syndrome. But I am no longer taking the alpha blocker.
My visiting home nurse wants me to do a CIC and see if I am still bleeding but I am reluctant to do so in case it causes a set back.
The pee itself is good with no blood.
In the meantime, she has been unable to get a Coude Foley for me as it is a special order and will take 2 weeks. They are made by Rusch in CT so I told her if she gives me the Rx I will order it myself in case I still need it. They are having a 60% off sale.
I have also ordered free samples from Cure and still waiting.
So that is the status of my own on-off experiment. I feel normal again - I wish it would stay that way.
Howard
hank1953 Howard31850
Posted
Howard, did you order the samples directly at Cure website ? I did it twice and and each time, they arrived after 2 days. If you have Rx, you can also buy them online easily and get them more quickly. They are so inexpensive so I don't even bother to go through my Medicare Advantage with 20% copay. Hank
Howard31850 hank1953
Posted
Hi Hank - I filled out the online order form for some free samples but never got a confirmation of my order. I tried phoning them but just got a message machine. I will email them tomorrow. In the meantime I am still 9 days now without CIC!
hank1953 Howard31850
Posted
Howard, how long have you been taking 5R ? I've read some studies that indicate after a year or so of taking it, most patients can stop taking alpha blockers.
https://patient.info/forums/discuss/αlpha-blocker-isn-t-necessary-in-bph-patients-using-5aris-594400
Have you check your prostate size lately ? Maybe it has shrunk enough now that you don't need either alpha blockers or catheters any more. Hank
Howard31850 hank1953
Posted
Hi Hank - I've been taking that darn Avodart for 15 years. It worked for the first 5 years and reduced my prostate size by 50%. But during the next 5 years my prostate grew back and has remained at 280 cc now for at least 4 years. I tried to stop Avodart 5 years ago but the prostate ballooned up to 380 cc so I had to restart it and then the prostate shrank back to 280 cc. So I cannot get off of it. It is a terrible drug if taken for over a year. It destroys the libido, grows man boobs etc etc. I guess on the plus side it gives me lots of hair on my head. If you see an older man with a ton of hair, man boobs and a spare tire then he is likely on Avodart.
I think stopping the alpha blockers has helped me as they relax the smooth muscle of the bladder wall. I will have to try a catheter tonight as my home nurse wants to know if I still have prostate bleeding. I shouldn't after 9 days of rest. I'll be careful with the Speedicaths. Howard
hank1953 Howard31850
Posted
It's also good to know if you still have retention or not. Good luck to you. Hank
Howard31850 hank1953
Posted
Hi Hank,
Just want to let you know I was able to buy a box of 30 Cure 14fr coude hydrophilic catheters from a local medical supply store. I will try one in the next day or so. Currently the bleeding has stopped and I only CIC once over a 24 hr period at night when I awake in retention and take out 800 cc. The rest of the time I have good NVs. I think stopping uro-xatral has helped improve my NVs as well as all the other supplements I was taking. I will let you know how it compares to Speedicaths which I do super slowly at night. Thanks. Howard
hank1953 Howard31850
Posted
Howard, wish you the best. Hank
hank1953 Howard31850
Posted
Hi Howard, why don't you cath before bedtime like me ? It may help you sleep longer and avoid that 800cc retention. Hank
paul61271 jimjames
Posted
Hi Jim. I've been CICing for three and a half years. I have BPH. (I am 68). I cannot void without using a catheter. I was using the high slip plus 14fr (no coude tip). I self catheterize about 7 times a day. Everything was fine for 3 and a half years. No issues whatever -- except when I first started years ago and urologist gave me a catheter that was not hydrophilic. I had pretty bad bleeding and went to the emergency room. But I switched to hydrophilic and the bleeding stopped within a day.
However, a few days ago, suddenly, I started bleeding again. This lasted for a couple of days. I think I was a little rough when inserting the catheter. I became extra careful after that. Then it stopped. I didn't have any bleeding for about a day. . But now its started again. Its not heavy bleeding but its very unnerving after so many years with no issues. I can feel a bit of irritation in my penis. I did a home UTI test and it was negative. Also, I have no symptoms of a UTI and feel fine. What do you think?
jimjames
Posted
Hi Paul,
Hard to say here sitting on a computer with the info you gave. Doesn't sound like it, but of course you want to rule out a UTI, especially if any pain, urgency, etc. That said, I've bleed a little a few times over the years, and like you suggested, maybe I was a little too rough or too much in a hurry. I got some very good advice early on, which was to always be gentle, and then be even more gentle. What tends to happen, is that after awhile we hurry things up not being as careful as we once were. Meanwhile, while I've never tried it,
some have reported good results using a lubricant in addition to the hydrophilic. Might be worth a try for awhile, although personally, I don't like to experiment too much these days because 99.9% of the time, things work just fine. Have you ever thought of using a coude tip? I don't want to contradict myself about trying something new, but there is always the possiblity that your prostate has grown since you started CIC. So, if the bleeding continues, and you rule out other things, a coude tip might be worth a try. I always use a coude (Speedicath FR12) and whenever I haven't, I tend to nick myself. Anyway, good luck and please report back. If it continues, def mention to your urologist to rule out other stuff such as false passage or something else. Best if the uro is well versed in CIC, but I realize that's not always possible.
Jim
paul61271 jimjames
Posted
Jim, thanks for the advice. Fortunately, the bleeding faded and then stopped. I have no UTI symptoms as I mentioned. I made an appointment with my urologist. I want to check out the possibility that my prostate may have grown. My urologist is on board with the catheterization. But, he did try to convince me to get one of the standard surgical procedures the last time I saw him. It's really not something I want to discuss so I tend to avoid going to him altogether. I do visit my regular doctor and all my tests last time were normal (comprehensive metabolic panel, etc.).
I tried the coude tip but found it uncomfortable. I don't have any trouble inserting the catheter all the way so I don't find I need it. I like the high slip plus but they discontinued production. I believe the company was acquired by another firm. I found a very similar catheter... the gentle cath hydrophilic catheter. I will be using that one now. I actually thought about adding lubrication, but the bleeding stopped as I mentioned. The eyelets on the new catheter seem a bit smoother, so I hope that will help. I think what happened is that I drank too much wine and got really careless. The procedure has become so normal to me that I became nonchalant about the whole thing. To your knowledge, is it possible to go on using a catheter indefinitely without encountering problems? I've looked into the various surgical procedures and I would like to avoid those. My urologist gave me flomax and finasteride initially but they didn't work for me (and I got all of the usual side effects).