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
alan1951 jimjames
Posted
daveonabike jimjames
Posted
Hi all, Newbie here.
Jim, I am really grateful for your posts. Thank you. You helped enormously as I started self catheterisation recently.
I have a very long history of urinary problems but until recently (until I had a UTI), I had been largely symptom free for a long time.
However, my bladder had been gradually distending over the years and (unnoticed), retained urine had been increasing gradually to be in excess of a litre. (It's amazing what you can get used to). The attention I got from the Medical Profession has been excellent but I just get the sense since a CIC routine has been established and I can get on with my life perfectly normally, that they have rather lost interest and that CIC for life is a perfectly acceptable outcome.
Well, it wouldn't be the end of the world but I'd try anything sensible to get back to normal voiding: so I was really interested to read this thread.
My dilemma is that, currently, unless I have approaching 1.5l of urine in my bladder, I can't pass water normally. However, I am, of course, keen to try and shrink the bladder so normally use CIC well before I reach this level. I'm worried that I'll simply get out of the habit of normal voiding. Is that a realistic concern?
On a positive note, on the occasions when I have allowed my bladder to fill to the point when I can void naturally, my retained urine has dropped from 1.2-1.3l a couple of weeks ago to around 900ml so (misguided or not), I have the hope that matters will improve...an optimistic outlook not shared by my Urologist.
Sorry to go on a bit.
jimjames daveonabike
Posted
Hi Dave,
You're retaining much to much urine. This will keep your bladder in a stretched state.
You should adjust your self cath (CIC) schedule so that your bladder is never holding more that 400ml, which is about the normal bladder capacity. So, if you can't void at all, that would mean 400ml or less coming out of the catheter. If you can void, that means the total of a natural void plus the catherized volume right after that. A void log would be very helpful here. Just write down the time and volume of catherized and any natural voids.
I understand your concern but voiding at levels approaching 1.5l is anything but "normal" and again all you are accomplishing is keeping your bladder stretched and dysfunctional.
What I used to do, and many here do, is to GENTLY push out with the detrussor muscles during the CIC process. You don't have to do this for the whole CIC, or for every CIC, but just once in a while to give the detrussors a little bit of exercise. You will notice if they're working when you see the urine flow faster coming out of the catheter.
Like yourself, three years ago I was also only voiding at around 1-1.5Liters. That's when I started CIC and followed the approach I have outlined. My doctor's also were not optimistic, in fact they told me I would never void normally on my own without surgery or a catheter. They were wrong and to make a long story short after three years I was pretty much able to get off CIC completely.
Jim
jimjames
Posted
Just want to add that the "on-off" strategy thing in your case is a down the line thing. Right now, you should be in the decompression stage which means resting and decompressing your bladder and not challenging it at all. To do this again, keep total volumes below 400ml whenever you can. If you're not voiding on your own, this usually translates into a frequency of 6x/day. What catheter are you using btw?
Jim
daveonabike jimjames
Posted
Hi Jim
Thank you: what you say makes complete sense (even though I had to Google detrussor :-) ) and is very interesting.
I am using the Coloplast SpeediCath compact catheter: a single use clever little design which is perfect when you are out and about: it's telescopic and as the tip is relatively narrow, it's "easy entry" although perhaps this makes it a little slow to drain: it normally takes me about 4 minutes to complete. (I have nothing to compare this with).
My prescription covers me for 4 of these a day: initially I was only allocated 2 but I think this was just to get me used to the procedure. I don't pay for prescriptions as I am over 60. At my last consultation it was suggested that I perhaps drank too much water as I am producing the best part of 3l of urine a day. This was a little hard to get my head around as I have spent the last years gradually consciously increasing the amount of water I drink. Obviously, with a relatively small proportion of urine passed normally, I am way off limiting my bladder to 400ml at the moment.
Thanks agan!
jimjames daveonabike
Posted
Dave,
I can't over estimate the importance of keeping your total volumes under 400ml if you do not want to cause any additional damage to your bladder and perhaps your kidneys, not to mention having any chance of rehabbing your bladder like I did.
And while some parts of my bladder rehab program may be termed "opinion" or "theory" or "anecdotal" this particular aspect of CIC (limiting bladder volumes) is universally acknowledged as fact by those knowlegeable and publishing in this field. Unfortunately, many get information elsewhere, often from their own doctors, which just goes to show their deficieny of knowledge even in the medical field on this particular area.
I would therefore do what you can to up your frequency from 4 to 6x/day (or even more) to get your volumes below 400ml, be it by getting a letter of medical necessity from a knowlegeable urologist for your insurance company or simply purchasing the two additional catheters online out of pocket.
If this is not financially feasible, I would even go so far as suggesting that you supplement your Coloplast Compacts with an externally lubed catheter that can be used multiple times. Multiple use catheters, while not as convenient, can cut costs dramatically as one catheter can be used up to ten days (60 uses).
3 liters is a lot but I was producing that as well in the beginning. Part had to do with water intake, but I think some had to do with the stress on my kidneys. How much water are you drinking a day? 6 , 8oz, glasses of fluid (water, juice, coffee, etc) should be adequate and no reason to go over 8 glasses unless you excercise/sweat a lot. A "glass" is smaller than most people think, so you might want to measure out 8 ounces to see what it actually looks like.
As to your catheter choice, several here use the compact and like it for the reasons you give.
Two alternative choices, both by Coloplast, are the Speedicath and the new Flex Coude model.
Both are longer than the compact which IMO makes the process easier. Also, I think you will find faster drain times if you order them in size 14F, although not positive on that. The other advantage is that both are available with the Coude tip and in fact the Flex only comes with the Coude tip.
A coude (bent) tip is designed for easier passage around an enlarge prostate. If your're cathing is going very easy you may not need a coude tip, but just as a comparison, it takes me less than 5 seconds to reach my bladder from the point of insertion using a coude tip. Not looking for bragging rights here, but if it's taking you like a minute or more, the problem could be the straight tip. Personally, I always get nicked or "stuck" with straight tips so like many with enlarged prostates can't use them.
Jim
daveonabike jimjames
Posted
Thanks, Jim...I'll take this up with my Doctor. I don't know whether cost will come into the equation at all. We are blessed in the UK with the National Health Service: I have no insurance as such.
I appreciate I'm not where I need to be but I feel a whole lot better than 2 or 3 weeks ago. I assume I have been carrying a large amount of urine around with me for many years. It was only recently that this became apparent following tests resulting from a UTI. Of course, the UTI was probably a result of my permanently full bladder.
I have a kidney scan in 2-3 weeks time which should reveal how much damage has been inflicted.
Thank You
jimjames daveonabike
Posted
Dave,
When I was retaining 1.5 liters my urologist's PA told me I only needed to cath twice a day, and this was at a leading teaching hospital. Then I did some research and calculated that given my retention I needed to cath 6x/day so my bladder won't remain streteched. I brought in the research, showed it to the PA, and she said, "Oh, technically I guess that's right".
The disparity between 2/day per my PA and the 6x/day "technically" is because most urologists, even the good ones, only see CIC as a stop gap measure prior to a surgery and don't believe that the bladder can be rehabbed long term. However, if you look into the SCI (spinal chord injurry) community where CIC is almost always long term, they set their cath schedule based on bladder volumes.
I'm not telling you to listen to me and not your doctor, but I am telling you at least take what I am saying as a starting point and do your own research which should confirm what I say. Hopefully you doctor will concur but if not then it's your duty to yourself as an informed patient to find a doctor you can work with.
It's good you're having a kidney scan but even if it's normal, your bladder is still going to continue to become stretched unless you stop carrying around all that urine.
Jim
daveonabike jimjames
Posted
Hi Jim
Just been away for a few days...
I have increased the CIC frequency in line with your suggestions. I haven't seen a Doctor yet but he signed off the latest order of catheters which leaves me with a month's supply at 6x a day with a few spare.
So far so good, my bladder hasn't been above 500-600ml for a few days and usually around 300-400ml. Still too high on occasions but having just been away from home, it has been a bit tricky to get my timings and water consumption under tight control.
A few days after starting CIC, my urine became clearer than it has been for years: unfortunately today, a little (white) cloudiness has returned. I'm hoping this is because I got rather dehydrated yesterday while travelling. I'll confess I also had a few glasses of wine at the weekend (family celebration) and ate like a man possessed so perhaps this affected it. I have been drinking a good amount of water today and eating moderately so hopefully that will clear up. I have been testing my urine with test strips and there's no sign of white blood cells which were plentiful when I had a UTI earlier this year so fingers crossed.
Thanks again...you should get an award :-)
jimjames daveonabike
Posted
Hi Dave,
Happy to hear that you're cathing more. That 1.5 liters you were holding wasn't doing you any good! Granted, it's hard, especially in the beginning to be under 400ml all the time, but I think you will find it easier as time goes on. I found that initially my kidneys unloaded big time when I started CIC but as time went by less so when the back pressure was reduced.
How many times a day are you cathing now? Are you able to get any natural voids and if so how much? If you're not keeping a void log, it's a good idea for now. Also, at this point, if you're unsure whether to cath or not, just cath. Can't do it too much at your stage, and some days I went over the six. Should you run short, I'm pretty sure you are allowed 200 a month (at least with Medicare) and possibly more with special permission.
I was about to guess "leucocytes" when you said your urine was cloudy but then you said you tested it. If you urine stays cloudy in the absence of leucocytes, nothing to be overly concerned about but you might want to run it by your urologist for more discussion and analysis.
What kind of urine strips are you using? I use Siemens 10SG which test for a number of things including SG which could indicate dehydration.
The other thing you should know is that it's quite normal with CIC to be colonized. Colonization is sometimes called asymtomatic bacturia or an asymptomatic UTI. That will definitely show positive for leucocytes (bacteria) as well as sometimes nitrites and blood. Again, normal, and as long as you are asymptomtic, no need to treat with antibiotics.
Jim
daveonabike jimjames
Posted
Hi Jiim, I'm a 6x a day man now (at least that's the plan) but I'm still producing well in excess of 2liters of urine. I'm drinking a lot but I have to to keep the urine light in colour. Hopefully this will settle out a bit.
I use Bayer Multistix which test for leucocytes and a range of other items (SG, sugar, pH etc.). I note that my urine is consistently acidic and has hgh SG.
My natural voids are minimal at 6x a day CIC. I passed a small amount when I went on to cath 600ml but none or just a few drops when the retained volume is lower. This still represents progress, however.
Your comments about colonization are interesting. Before starting CIC, leucocytes were always high after I contracted a UTI in January. That was despite taking 3 courses of antibiotics. My urine now seems clear of blood and nitrites as well as leucocytes.
jimjames daveonabike
Posted
Dave,
Six times a day sounds right. In fact everything sounds good. You might do a fluid intake log and see how much you're taking in. How high is your SG? Most people have acidic urine on a "normal" diet. In general six, 8oz glasses of fluid is about all most of us need. But FWIW I was also producing more than 2 Liters of urine for several months after I started CIC. Once your natural voids increase, and if you keep up the 6x/day schedule, you will see your bladder volumes drop even more.
Are you using the Bayer "10SG" Multistix? They are the same as Siemens and my understanding is that Siemens took over, so you might take at look at your expiration dates!
It's a bit of a paradox, but while CIC can cause Uti's, they also can prevent them since it drains the stale urine where uti's can breed. With all the urine you were carrying around, my guess is that you will have less UTIs with CIC than before, but you still may end up with colonization which is OK. But again, if your urine remains cloudy without with negative leucocytes, bring it to your urologist's attention.
I probably asked before but what catheter are you using and what size, etc?
Jim
dennis47445 jimjames
Posted
Jimjames, I think it woud be helpful to many, that you do a video and upload it to YOu Tube. Who knows how many folks you can help with bladder problems. I'm a believer in what goes around comes around.
dennis47445 jimjames
Posted
Jimjames, What I've been doing is when I CIC, I contract my muscles, and so the stream of urine increases. I do this contraction and no contraction the entire time while doing the CIC. I guess, it would be kind of similar to muscle building such as yours, but a little different. I'm pretty good with never giving up, and so lets see what happens with this method. I also do 15 sit-ups in the morning to bulid up my adominal muscles.
jimjames dennis47445
Posted
Hi Dennis,
You might want to do a more precise log of both natural voids (NVs) and CIC voids for a couple of days. If you want to keep the bladder from stretching, it's important to keep bladder volumes under 400ml. That would be the total of your CIC void plus the NV just preceding it. I understand that efficacy has to be balanced with convenience, but if so motivated, I would then increase my CIC frequency if you find your total bladder volumes frequently over 400ml.
As to the "contractions", I used to do the same when I had no NVs. But when the NVs came, I felt it wasnt necessary to do the contractions with CIC because the detrussor's were getting enough exercise with the NVs.
If so motivated, you might want to take another look at my "off/on" method. It's really more than exercising the detrussors, it's reeducating them to function without CIC. But again, it can be a convenience/lifestyle trade off.
Jim
dennis47445 jimjames
Posted
Thanks for your advice. I'll probably just keep on doing what i've been doing, until I see a major difference in my natural voids. Going up to 500ML is more of an exception rather than the rule. I do feel that I did get better since I've started doing CIC's. My next problem, will be this Saturday, when I fly to the Big Island for a day with friends. I plan on storing my catheters in a backpack, along with my sanitizing napkins. Doing a CIC in a public restroom will be a new thing for me.