Self Catherization. An alternative to Turp, Greenlight, HoLEP...?

Frank, my  wife's friend's dad, self-caths every four hours.  He is 87 years old and as far as I know, has no problem self-cathing.  He is a little wobbley standing, and is not in the best physical shape, but manages to self-cath on his own.

Dennis that is good advise. Maybe it would be best for Frank to try it seating down.  It may be easier.  Take care  ken

Sitting works best for me.

John

Hi Frank,

I have given thought to Urolift, PAE and other less invasive procedures, but at this point self cathing is working so well that I'm comfortable to stay where I am.

4 months is a long time to have a foley in. In your shoes I would seriously consider self cathing or at least a suprapubic. Either would be preferable to  your current situation.  

As to "waiting too long", if what you mean is will delaying an operation too long be harmful to your bladder -- the answer is "no" as long as you are emptying it fully daily which is what self cathing does. 

Jim

Per other replies, you can self cath standing, sitting, or lying in bed. Whatever works best for you. But again, time to get that Foley out so you can get a bit more mobility and normality into your life. Very important at any age, but especially as you get older.

Jim

Hi Jim

I seem to maintain a pvr of about 250ml by self-cathing twice a day. Do you think this is ok or do I need to cath more to keep the residual as close to zero as possible? I am comfortable during the day but do get up twice during the night to pee even though I restrict fluids after 7 pm.

Thanks for all your help.

Neil

Hi Neil,

Since PVR is only part of the story, I'm assuming your total bladder volume (Natural urination plus PVR) is pretty much always under 400ml, which I believe you previously said it is. 

First, if you haven't already done it,  I would make sure your pvr is only 250ml a day (and total volume under 400ml) by randomly cathing off schedule now and then and checking the math. 

If that checks out then a pvr of 250ml falls within accepted guidelines for your twice a day schedule. That said, if you want to further experiment, you could throw in another one or two cath's a day and see if there is any overall improvement in your natural voids, bladder tone, etc. You don't have to do this every day, just maybe for a few days, then go back to your regular schedule, etc. Reasonable experimentation isn't a bad thing because it can give you real feedback that schedules sometimes can't. Unfortunately doc's hardly ever ask us to experiment for a number of reasons including their underestimation of a patient's ability to meaningful participate and impact their own treatment. 

I experimented quite a bit with cath schedules, etc, including random checking just for the purpose, of well, random checking, to make sure that what I thought was in my bladder was actually what was in my bladder. And again, my significant improvements, where PVRs are often under 50ml, and where I can sometimes go for days/weeks without self cathing at all, did not happen until the second year, so don't necessarily expect day to day improvements. Patience is important. 

Jim

Hi Jim, How long do you think it takes to get used to sel cathing?Maybe a silly question.How do you know when to self -cath? Do you just do it evey day ,say about 6 hour intervals?

thanks for all the info!!

Hi Jim, What is PVR mean? My urine bag in the morning with a foley catheter has approx 2000 ml . Is this normal or a lot ?

thanks ,Jim

Thanks Jim - we are all very fortunate to have you guide us. I for one cannot get any answers from my uro on these problems.

I do average about 200ml free peeing before I self cath and take out another 250 or so. I'll try your suggestions and see what I discover.

Some days I don't self cath at all and still find when I self-cath the next day after missing a day that my pvr is still close to 250ml. If I did not self cath at all but always had a resiual of 250ml after free peeing do you think that would be a problem over time if the residual stayed at that value and did not increase?

Thanks again.

Neil

Hi Frank,

Getting used to self cathing really varies with the individual. From what I've read elsewhere, and with some of the stories related here -- many people adapt very quickly. Personally, I had a very difficult first couple of weeks, compounded by a urinary tract infection -- perhaps two -- that was not treated adequately by my medical team. A few months later, with my urinary tract infection behind me, things became a lot more manageable. Today, when I do have to self cath, which is not anymore even on a daily basis, it's about like brushing my teeth in terms of inconvenience, just takes a little less time. 

Besides the initial physical trauma, I also experienced a significant mental trauma feeling like my life as I knew it was over, now having to use tubes to go to the bathroom. I feel absolutely none of this now but looking back to the beginning it was very real and frightening. So, if anyone feels this way, just to let you know that the feeling will pass and at some point in the future you will wonder what the big deal about self cathing was all about. 

As to frequency, initially it is determined probably by your urologist based on the amount of retention you have. Six times per day is a figure many start out with who have significant retention. Later, you fine tune it by doing a void log which notes the amount of natural urination and what comes out of the catheter. The rule of thumb is that if more than 400ml comes out of the catheter, you increase the frequency. If less than 100ml comes out, you decrease the frequency. I fine tuned it more later on based on other factors such as the combined volume in my bladder at any one time which includes not only the catherized volume but any natural void as well. 

Jim

Neil,

I was probably carrying around 400-600ml of urine in my bladder for years before I developed hydronephrosis (urine backing up into my kidneys) and my bladder got to the point where for all practical purposes it stopped functioning. So that's when I started self cathing, pretty much at the last possible moment. 

So, sounds like  you're a lot better off now then I was years before I started self cathing, so sure you could probably stop self cathing altogether and maybe get by for years as long as you monitored your kidney function (blood tests and imaging) and didn't develop too many UTI's. Just keep in mind that things with the prostate bladder tend to get worse over time if you leave everything alone. 

Have you done the I-PSS score test? If not, you really should. I believe I started a thread on it. If your score isn't too bad, and again if your kidney function tests and UTI frequency are OK, then I don't see why you can't back off from self cathing to one degree or another. On the other hand, if your score is not so good, then self cathing could help. And certainly, if you start getting too many UTI's or have any issues with your kidneys, then you really don't have a choice but to self cath, do a procedure, or try some of the drugs and live with their side effects.

Jim

 

Like to add that I wish I had started self cathing years before I did. I remember even in my 30's and 40's getting up during a movie two or three times to go to the bathroom. I had UTI's yearly, sometimes more. Up three or four times every night to go to the bathroom. Developed a large diverticulum (pouch) in my bladder because it was under so much pressure.

Today, even when I don't cath, I can easily sit through a three hour movie without a bathroom break and wake up only once a night to go to the bathroom. Have had only one symptomatic UTI in the last 18 months or so and even that one probably could have been avoided had I not become careless one evening with my cathing technique.

Jim

Hi Jim. You have given great info,my urologist says why do you want to self cath? Let us try to help you get out of retention>When i first was caterized i had 873 ml this was in June--second void july 660 ml August780 ml Sept i don't have. I'm still taking dustasteride ,and flomax,

Do you think their could be  a chance the medicine could work, get me out of rentention?With foley catheter  after a nights rest,in the morning my out put is around 2000.ml What does PVR MEAN?

THANKS VERY MUCH JIM FOR ALL THIS INFO!!

Uro,wanted to do a Turp> at almost 87 years old  with all the bad news i'm  reading on this forum ,it doesn't sound to good.

 

Hi Frank,

PVR stands for post void residual. It's the amount of urine left in your bladder after you do a natural void. For a healthy young male it should be close to zero or at least under 50ml. For an older adult 100ml is often considered acceptable. Above 100ml doctors often start monitoring the situation and often begin to prescribe drugs like flomax to empty the bladder more completely. PVR can be easily measured in a urologists office with a portable bladder scanning device. If can also be measured via a catheter but that's really not necessary or adviseable, unless the person is already on a catheter program.

In your case, what you're talking about isn't retention, but what sounds like a 24-hour urine output? If so, 2000ml sounds normal. I assume you had a retention problem prior to being put on a Foley. 

Jim

Thanks Jim - you are truly our guardian angel!

I guess I have conflicting information about my BPH. My IPSS score is 30 which it was 9 weeks ago before my PAE. But my recent creatinine blood test was very good and I have never had a UTI! But my prostate is 300gm though no median lobe or diverticula from a recent cystoscopy last June. I have been on alfuzosin and dutasteride for over 10 years with all the usual bad side effects. I had hoped I could get offf them after the PAE but not so. My PVR seems to be pretty steady at around 250ml after peeing 200 ml or so. I should self-cath more I know as I am waging a losing battle over time (I am 67). I bet my IPSS score would really come down if I did more self-caths now that I think of it that way as well as reversing the inevitable decline of bladder function over time. I could probably get off those awful drugs too. That is a lot of gain for a little more cathing! Thanks as always - you really help us all think it through. Neil

An I-PSS score of 30 is severe, so it's obvious that you had to do something. What I don't understand is why you are still on alfuzosin and dutasteride? If it were me, and I didn't like the side effects, I would stop both drugs and take up any slack by increasing the frequency of self cathing. As I understand it, the purpose of those drugs is to cut down your PVR by one mechanism or another. Self cathing can do the same thing without their specfic side effects.

So, yeah, get off those drugs, and tailor your self cath schedule so you still have acceptable bladder volumes. If that means going from 2 times a day to four (or even six) so be it. At some point it might come back down to two or even less like it did with me. But in any event, it's your body and you have to weigh the pro's and con's of cathing more rather than taking drugs with you don't like.

BTW I just did my I-PSS score and it was 7-9 which is mild to boderline moderate. If it wasn't for the "weak stream" question -- which I really think is more of a diagnostic question than a quality of life question -- I would be a 3 or 5 which is like a 15 year old!  Prior to CIC I was 30 plus, "severe".

Jim

Jim

Thanks Jim - I am so glad you are out there in cyberspace to help us not be victims of the doctors. You are right about the drugs - it is time for me to get off the fence. I play mental games with myself a lot to pretend things are not as bad as they are. You are great - thanks so much. All the best to you. Neil

Hi Jim, Yes , I have a retention problem. Ond day i found this mass on my stomach,no pain,went to a Uro and they did a ultra  sound. I was caterized .700 ml came out. I am greatful to you for all the info on CIC. My URO.never mentioned it ,i was put on a foley catheter and had PVR every month,also kept me on Avordat and flomax. It's been 5 monrhs ,still have complete rentention. Does selcath 7 times a day,seem normal?

Thanks,for all this info.

Good morning Frank..  Just got a note from my urologist.  Hes ask me if you were told that you had a atonic bladder. He said that if you are going that much you must not have a total atonic bladder.  He said to ask you urologist for a medication to help you not go alot but he said that 7 time a day is about normal.  Take care  Ken 

Hi Kenneth and Frank,

Frank, are you sure you described Ken's situation correctly. Ken isn't able to urinate naturally at all which suggests his bladder IS atonic for now. Cathing 6 times a day is normal in this situation, as are the void amounts Kenneth noted. Unless I'm missing something, asking for a medicine that allows you "not to go alot" makes no sense.

Jim

Jim  I'm peeing fine. I asked my urologist for Frank. He said that is normal  to be doing CIC 7 times a day.  He never told me a med. He F told me to tell Frank to talk to his urologist because he think his going to much  Ken     

Hi Ken,

Sorry, got things backwards so let me try again

Frank said he has "complete urinary retention" which I assume means he isn't having any natural voids and is therefore relying solely on self cathing to empty his bladder. It also suggests an atonic bladder for now. 

Asssuming this, a self cath schedule of around 6x/day is normal.  Therefore I don't understand why your urologist thinks Frank is "going" too much or needs to take meds to go less.  

Hope this makes more sense.

Jim

Almost Jim.  My urologist does not think he is going to much.  Frank asked me to ask him if he ( Frank ) was going to much.  Frank wanted to know if  he was going to much.  My urologist said 6 to 7 was about normal.  Have a good day  Ken  

Hi Ken,

I was a little thrown off about the "medication" part but sounds like we're all on the same page now. Thanks for your help and patience.

Jim

No problem  Ken

HI Jim,

During the day my cathing is pretty good: NVs about 150ml and CVs about 250ml. Just before bed at around midnight I get the same numbers.

Lately I've been sleeping through the night (helped by tylenol) but when I get up at 6am I cannot NV and my CV is around 650ml. The rest of the day is ok ( 4 times total per 24 hours).

Should I get up in the middle of the night and cath to keep this large number down? Problem then is it is hard to get back to sleep but I worry I could be damaging my bladder with these large volumes. They are fairly consistent every morning.

Thanks. Hope you are doing well.

Neil

650 is not too bad if it's just once. That said, under 400 is ideal because over that it is stretched some, so you have to weigh the benefits of keeping it under 400 against a full night's sleep.

Is that regular Tylenol or Tylenol PM? Regular Tylenol could cause retention but Tylenol PM (contains an antihistamine) could cause even more retention. That might be why you get no NV when you wake up, or it just could be that you can't NV because your bladder is so full. Have you ever been able to do a NV with 650ml in your bladder when not using Tylenol?

If you do decide to get up at night to void, you could experiment just doing a quick NV (no cathing) into a urinal by your bed which should be less awakening than cathing.  Then you would check things in the morning to see if you're under 400 and go from there.

Jim