Self Catherization. An alternative to Turp, Greenlight, HoLEP...?
Posted , 82 users are following.
Since I posted a thread about self-catherization -- more formally called Clean Intermittent Catherization (CIC) -- there have been a few different discussions on the topic in various threads. I thought it might make sense to bring those discussions over to a dedicated thread. With that in mind, I will summarize and/or copy and paste some of what was said before into this thread for better continuity.
My story in a nutshell. 68 years old with BPH probably since my late 20’s. Watch n’Wait strategy with on-and-off trials of Tamsulosin (Flomax) with poor results. Symptoms were the normal retention issues resulting in frequent urination with incomplete emptying, urgency, and having to go to the bathroom at night in increasing frequencies. Near the end, two or three uti’s per year often accompanied by gross hematuria (bleeding).
Two years ago things got significantly worse and I couldn’t urinate on my own without physically pushing against my bladder (Crede Maneuver). That led to another trip to the urologist where ultrasound showed significant retention and hydronephrosis (water in the kidneys). I was told I needed an operation (this facility primarily did Turps) but first I had to rehabilitate my bladder because at the time it was too flaccid (stretched) for a good surgical outcome. I was given the choice of wearing a Foley Catheter for six weeks, or a program of self-catherization (CIC) in order to decompress the bladder. I chose CIC so I didn’t have to wear a Foley 24/7, and also because I felt it put me more in control.
Six weeks later my bladder was rehabilitated to the extent they could do a Turp, and the hydronephrosis was gone. After doing some research and a lot of thinking I decided to put off the Turp due to the potential of irreversible side effects, primarily retrograde ejaculation. Two years later, I am still doing CIC while waiting for newer procedures with better outcomes and fewer side effects.
I will detail my experiences with CIC in following posts -- but to summarize, once mastered, it’s a painless five minute procedure that allows you to empty your bladder completely any time you want. With CIC, I therefore have no retention issues, no urgency, and in most cases sleep 6-8 hours through the night without having to get up and go to the bathroom. No UTI’s in over 18 months. And because my bladder has been partially rehabilitated, I can urinate normally about 50% of the time without using the Crede maneuver. My IPSS Score (International Prostate Symptom Score) would be Zero (the best), albeit with a little mechanical assist. 
As of now, nothing that I have read about the various current procedures has tempted me to have an operation. That could, or could not change, in the future, but the nice thing about CIC is that you can stop it any time you want with no repercussions. The caveat is that CIC should be done under the supervision of a doctor who will monitor your BPH as required. Similar to seeing a doctor on a regular basis during a Watch n’ Wait BPH strategy.
I know many of you here have already had operations like Turp, and in most cases people seem pleased with the outcomes. CIC certainly isn’t’ for everyone, and I can understand why someone does not want to carry around a urinary “tool box” with them. On the other hand, with practice, it’s not the traumatic and scary procedure some think. I can honestly say right now that for me it’s about as traumatic as brushing my teeth.
I’m offering my experiences and thoughts on CIC for any of those who haven’t yet made up their mind on an operation. It even can make sense for those of you who don’t need an operation yet, but want to increase their IPSS quality of life score. In fact, wish I had done CIC earlier while on Watchful Waiting. Didn’t realize how much BPH had been affecting me for most of my adult life until I was able to empty my bladder completely.
CIC doesn’t have to be a permanent solution, it could just part of a waiting strategy like I’m on, until better surgical operations are developed with better outcomes and fewer permanent side effects.
For any number of reasons, the majority of urologists don’t seem to offer CIC as an alternative to surgery. My current urologist doesn’t as far as I know, but he’s OK with what I’m doing because it works for me. So, either you have to find a urologist you can convince to go along, or go to some of the major teaching hospitals where CIC is probably more in use and better understood. That is where I was taught, albeit not very well, but that is another story.
Jim
19 likes, 2092 replies
jimjames
Posted
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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
jimjames
Posted
So again, a few years back, atonic bladder with no hope of ever being able to naturally urinate again, according to some prettty esteemed "experts".
Today, if I'm on my feet most of the day, I never have to catherize at all and my normal voids are, well normal, without almost no retention, or certainly within acceptable limits. For that reason I rarely carry catheters around during the day and my urinary function is, again, normal.
The only time I seem to need to cath is when I get back home and maybe sit or lie on the couch for an hour, take a nap, or sometimes in the middle of the night depending on the previous day's fluid intake. And even here, if I get up and walk around for a bit, I can forgo the cathing and just naturally void.
So what's with this last obstacle, the sedetary thing? Well, I've read similar accounts elswhere where folks have a hard time voiding after being sedetary and an easier time after moving around, so it's not unique to me. Maybe it's the detrussor muscles warming up? Maybe it's the change in position of the prostate? Maybe it's that I produce more urine lying down and therefore harder to naturally void with a very full bladder?
I thought it was the latter for awhile, but not sure anymore because I have had some pretty large natural voids during the day lately (400cc at times) without any discomfort, but during that time I had been active and not sedetary.
So still working on this one. If I can get by this one hurdle, then the catheters can go in the closet. But actually they could go in the closet today if I didn't mind waiting a bit to void after lying down. But when you have a process (self catherization) which really becomes so easy and simple, why wait?
Jim
dennis47445 jimjames
Posted
Jim, that was really interesting. I have been self-cathing for 16 days. In the beginning, I couldn't urinate on my own. I could only dribble, in between cathing. Currently, I can urinate sometimes pretty well. If I was to grade it as if we were in high school. I would give my self a D+. I cath, once or twice a day. It feels great to have an empty bladder. Sometimes, I will cath 3 times a day, if I have to go somewhere, and I want to make sure that I have an empty bladder, so I won't be stuck at a place and not be able to urinate. By the way, I did a turp on July 26 of this year. AFter the turp, I couldn't urinate, and so I was on a foley for about a month. Total time on a foley was around 3 months. It was the pits, having to wear that bag. Everytime I moved a certain way, I could feel the catheter inside of me...very uncomfortable. Now I feel back to normal except I have to cath, and so I need a bathroom available. Thank you, for your in depth explanation on cathing. It was a great help for me. I am looking forward, on cathing, to see if I can get my bladder, in normal shape again. By the way, I notice the same thing: if I was sitting for a long time, and get up to urinate, the flow is not that good. If I was standing and moving around, the flow is better.
jimjames dennis47445
Posted
Glad it's working out. I don't cath every day now but when I did, I would also cath before going out just so I wouldn't have to cath outside the house that much. Lately, I've been out a lot during the day and riding a bicycle which is probably not the kindest thing to the prostate/bladder! Because of that on occasion (lazy I guess) I skip the urge to naturally void during the day which brings me home with a bladder too full to naturally void. Some agressive self cathing in the evening and perhaps the next day seems to help tone things up and then I don't need to cath for a few days. The lesson here is that even a rehabbed bladder is still a bit stretched so it's easy to skip the urge to naturally urinate which ideally you shouldn't, at least not too often. But if you do, it's great how a few rounds of self cathing can get things working better.
Jin
jim1233 jimjames
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jimjames jim1233
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So actually something fairly new to me, doing CIC in a public restroom, but really no big deal. Find a stall, take out the catheter from the backpack. Squirt my meatus a couple of times with an antibacterial spray and then insert the catheter. Takes only about a minute longer than if I wasn't using the catheter. I suppose I could do it in the urinal, but..
Jim
davidh35 jimjames
Posted
I'm interested to hear more of the nitty gritty details of your journey in doing self cath. I just had the TURP procedure and overall everything is fine except that for some reason I seem to have some kind of blockage or urethral narrowing right near the tip of my penis resulting in a much smaller exit for the urine and this a very narrow stream. Since the stream is now pretty vigorous, there is some discomfort with the strong stream trying to pound through a narrow opening. No problem though completely empying my bladder (at least when i went in for my two-week post surgery checkup, the bladder scan showed zero PVR. I have asked my Urologist about how to possibly prevent any strictures from forming and to make the exit bigger and all he suggests is to insert a catheter about one inch once per day. The very thought of inserting anything in to my penis though scares me and nauseates me a bit. I know I'm a baby. Since the urine hole is so incredibly small, like a pinhole, I don't even see how a catheter would go in now. Would really like some detail and what is best to use and all that in order to make it "painless" (hard to believe) and as traumatic as brushing my teeth 9also hard to believe).
tom512836 davidh35
Posted
Tom
davidh35 tom512836
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But yes, over 30 years ago when my wife and i were having fertility trouble, i went to a urologist who told me that the opening was a little smaller than normal but he didn't think that was the cause of the infertility (it wasn't). Still, as I said, I cannot remember my stream ever being this narrow/thin. Not that i ever paid much attention to my urine stream before. But before the TURP, I had the Cystoscopy procedure to scope out my urethra and bladder and prostate and afterwards I watched my flow carefully and also after I had a complete and total emergency urinary retention episode where I could not urinate at all, after i got the Foley catheter out, I was keeping a urination diary of my stream and everything and i never wrote anything about noticing any out of the ordinary narrowness or thin-ness or that my exit hole seemed much smaller.
So, for example, I'm not sure because I'm not that familiar with the structure of the normal penis, but i thought that when I used my thumb and forefinger to gently pull apart the slit in the head of my penis, that I should see a hole there where urine would come out. But I see nothing but flesh and if i look really hard way toward the very bottom, there is just a very small pinpoint hole that i can barely see. I don't remember it being like that prior to the TURP procedure.
jimjames davidh35
Posted
Now, listen carefully, I insert a 14 inch catheter into my urethra right up until almost the end. That mens 13.5 inches of catheter is inside me. And yes, it's about as easy and painless as brushing my teeth at this point.
So, you have to go in how far? One inch? Do not worry, it will be real easy.
I would start with a narrow catheter say size FR12. When that goes in easy, then go up a size to FR14 and then to FR16 and FR18, or until the sensation you are talking about goes away. Probably continue on afterwards per your urologists suggestions just to keep it open if that indeed is the problem.
I usually recommend Speedicath made by Coloplast. It's a very slippery catheter with a hydrophillic coating meaning you do not need external lubricant. My hands never touch the catheter itself as I hold it by the plastic funnel and literally dive bomb it in.
In your case, however, since you're only going in an inch, you might want to grab the catheter much closer to the tip, say 4-6" away and guide it in. As mentioned, the Speedicath is slippery so surgical gloves might help you get a better grip on it. If still too slippery, then I would switch to a vinyl catheter and use external lubricant probably just squirted into the meatus and/or first inch of the catheter so it will be real easy to get a grip on it. Slowly and gently is always the key.
Just observe common sense hygeine. Wash your hands and either use an antibacterial wipe or spray into the meatus. Do not use anything with alcohol in it (like a hand sanitizer) or it will sting real bad, at least that is the case with me.
The self cath thing is 90% in the head for most people. The physical process is no big deal over time, especially if you're only inserting it an inch or so. Do not worry, just do it.
Jim
jimjames
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Jim
davidh35 jimjames
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jimjames davidh35
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Again we are talking apples and oranges. Sticking a catheter one inch ino the urethra will be far less traumatic initially then sticking it 13.5 inches into the urethra and navigating around the prostate and sphincter muscles. You won't be going near any of that.
But to answer your question, I had a rough start, quite rough, but after a month or so I got pretty comfortable with it. Now, it's like brushing my teeth, no kidding.
Don't think a numbing agent is needed but see no harm if it will make you feel better although for it to be effective (never used one) I assume it would have to be squirted into the urethra. My guess is that the process of squirting the numbing agent into the urethra will cause more pain then inserting a catheter one inch into the urethra without a numbing agent, but may be wrong. Like I said it's 90% in your head. Anyone should be able to make one inch!
Jim
Jim
michaelmike davidh35
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I am an infrequent visitor to this site , I' m just dropping in...
I've been self Cathing for 3 1/2 years, and there has never been any pain.
I remember thinking that inserting a catheter seemed like it would be some kind of torture. but it is not. The catheter should be lubricated , and for some people the coude tip makes things pass easier when the tip gets to the prostate. Make sure that the tip is oriented properly as explained by Jim. Like Jim, I am a fan of the Coloplast Speedicath. itcomes already lubricated.
Michael
michael
Howard31850 jimjames
Posted
Do you have any experience with the MTG Coude tip sterile catheter that stays in its own bag while inserting it? It has a short protector tip to prevent the catheter tip from touching the first inch of the penis where they claim 90% of bacteria reside and can be pushed into the bladder by conventional catheters. I'm just starting and worry about a UTI. Thanks
jimjames Howard31850
Posted
I tried a few of the closed system sterile catheters that stay in its own bag. Found it next to impossible to keep the Coude tip oriented properly when feeding it in which in turn caused my trauma. Real PITA. Best and easiest for me is the Speedicath Hydrophillic with Coude tip by Coloplast especially using the "no touch" technique described elsewhere in this thread. No problems with UTIs the last couple of years. Only problem was UTis was the initial "break in" period which I attribute moto urethral trauma before the body adjusts to the catheter.
Jim
Howard31850 jimjames
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Thanks Jim for your response. I have a 300 gm prostate extended along my urethra but no medin lobe o bladder neck obstruction. I am scheduled for a PAE in August. But unfortunately I went into AUR this past Monday. My uro started me on a 16 but it almost killed me and would not go past my prostate which really constricts down my uretha. So we tried a 14 and it worked after much pain and bleeding. They didn't offer a coude tip but after reading all your posts I convinced them to order the one you recommend above. I worry about a UTI now as it would delay my PAE. So I just keep the tip pointed up towards my screaming face as I insert it? Thanks for taking the time to share all your knowledge with us. Neil
jimjames Howard31850
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If you are not using one, you might want to try Coloplast's hydrophillic catheter with a coude tip. Get samples in 12, 14, 16 and 18. Start with 14 and then work down or up whichever works best for your anatomy. Easier said then done in the beginning, but relaxation is the key and go very slow and gentle. Then more gentle. I will post a You Tube video on proper insertion in a following post but it will probably be blocked for moderation for a few days so I am going to send it to you via private message.
Jim
Howard31850 jimjames
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Hi Jim,
Thank you very much for all your help. I believe you have discovered an entirely new paradigm for treating BPH. ALL treatments to date have focussed on the prostate either with prescription drugs that have terribel side effects or so-called minimally invasive surgical procedures that destroy the urethra or else major surgeries. What you have done is to focus on fixing the EFFECT of BPH on weakening the bladder over the years rather than on fixing the prostate with terrible consequences. So by your persistence and courage and intelligence you have shown over two years that by taking the urine load off the bladder you have allowed the bladder to regain its strength to the point that it can now overcome the backpressure caused by the large prostate. So now you just have to maintain that bladder health by maintenance self-cathing each week so the bladder does not return to its atonic state. And you achieved this without drugs or surgery. It is brilliant and you should find a way to disseminate your experience more broadly so that other BPH sufferers can benefit from your great experiment. Your "cure" is not divine intervention or some unexplained miracle but is just simple physics. So i would think the uros and the interventional radiologists and the drug companies would hate you - but us sufferers will hold you up as a hero! Good going. I have had BPH for 20 years and have resisted surgeries all these years but I have had my life ruined from Proscar, then Avodart and the alpha blockers. Now for the first time I am going to try PAE which seems simple. But if it fails my uro wants to do a robotic SP as a last resort. However if I can find the courage to do all the self-cathing like you did at the start and get over the hump to bladder recovery then I will try the "jimjames protocol". Thanks again Jim. As an engineer I understand and appreciate your great achievment. Neil
jimjames Howard31850
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Hi Neal,
Thanks for the nice words and for your engineer's take on the process of self catherization.
Modern medicine offers some great breakthroughs, but sometimes in search of the latest and greatest -- simple, workable and low tech solutions are often overlooked and dispensed with. Self catherization has been around for some time but nowadays is mostly related to either the SCI (spinal chord injury) community or used by urolgists as a stop gap before or after surgery.
In my case I was offered self catherization as a temporary six week bladder rehab prior to a scheduled TURP procedure. The more I read about the procedure, the more I was reluctant to go through with it.
I started with six times a day back then as my bladder was almost non functional (atonic) because of years of retention. My urologist, the head of urology at a large teaching hospital, said I would never be able to urinate normally again without the operation. Today, a few years later, I am able to urinate normally most of the time with almost no retention. This week, for example, I probably self cathed only 4-5 times total, and they were all in the evening after larger than normal fluid intake. During times that I have watched my fluid intake I have gone for weeks without self cathing, but frankly the process is so easy, quick and painless for me know, that I'd rather have that extra beer and self cath then not!
Jim
jimjames Howard31850
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dennis47445 jimjames
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patrick45945 jimjames
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Jim, will you please PM me that video? I see the uro tomorrow and expect he will start me on CIC. Since it will be Friday, I will ask if I can start early next week in case I have trouble over the weekend and can't get help from uro staff as someone here recommended. That will also give me time to run it by my EP to ask about bleeding while on blood thinners. I already get blood while bike riding and walking with the Foley.
Curious if you are on blood thinners with your afib. Is CIC an issue with blood thinners? I take Pradaxa.
Patrick
jimjames patrick45945
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I sent you a PM with video. As to thinners and CIC, I doubt it will be a problem once you get used to it, but it could be a problem in the beginning when some people bleed more often. I would discuss it with both your urologist and cardiologist or EP. Discuss with them a back up plan if you do bleed.
Jim
keith42667 jimjames
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Jim
How do you know that you need to cath if you're only doing it 5 times a week? Do you check your retention each time or you are relying on urges? I've been doing cic for about 2 1/2 years now. At first I had to go by the clock and do it about every 4-6 hours. With self-cathing, the feeling in my bladder (or rather, the nerves) seems to be coming back enough so that I can use that to tell when to try to pee. But even now, sometimes I get a strong urge; go stand at the toilet; and nothing comes out. At that time I do one of two things. Either, after standing there for a minute, the urge goes away with no natural void so I wait for a few minutes; or I get out a little bit and cath. I can't imagine at this point that I would hold it for very long because usually now when I get an urge I'm still retaining at least 250 ml.
All I'm saying is I don't know how one would know he has to cath if it is that random. Are your urges stronger when you say to yourself that you'd better completely empty?
jimjames keith42667
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Keith,
Good question.
In the beginning, 5 years ago, I had no natural voids to speak of, so I did it by schedule, usually
6x/day. At that time I did a void log, so I knew how much I retained by simply measuring the cath volumes. I tried to keep the PVR (post void residual) below 400ml. So if my cath volumes started to climb above 400ml, I would cath more often. When they started falling, I would cath less.
Today, when I void naturally, my PVRs are under 100ml, often under 50ml. I know this because I've periodically checked either by cathing afterwards or with my bladder scanner. I attribute this to my bladder rehabilitation from CIC.
So to directly answer your question. Nowadays I only void when I feel an urge. If I can do a natural void, that's all I do. I do not cath afterwards because I already know the PVR is below 100. On the other hand, if I cannot do a natural void, then I cath.
So for me, now, it's all or nothing. Either I have a good natural void and pretty much empty out or I cannot void at all and cath. It has to do mostly with the volume of urine in my bladder. If it's under 400ml, then I can empty it almost completely. If it's too high, I can't empty it at all. So, depending on a lot of variables such as fluid intake, activity level, diet, etc, I sometimes can go days without CIC -- at one point I went several months -- or sometimes I have to cath several times a day. Lately, because of my tachycardia (afib, SVTs,aflutter) , it's more like several times a day because the tachycardias unload my kidneys quickly and I go over that 400ml threshold before I know it.
My advice is to not to carry more than 400ml in your bladder at any one time and set your schedule to that. You should also be emptying out to under 100ml, ideally under 50ml. You can measure your PVR easily by cathing after a natural void or with a bladder scanner.
Jim
patrick45945 jimjames
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Jim,
Good answer to a good question...I was wondering about that as well. On the days that you have to cath several times a day because of the tachy (I get these occasionally too), how do you know you are over the 400 ml limit "before you know it"? What alerts you to this condition?
I met with the uro today to discuss my failed urodynamics testing and while he admitted he wasn't looking forward to giving me bad news of the results of my test, he was impressed with the list of questions I brought and my positive attitude going forward, thanks in good part to what I have learned from reading this thread.
He agreed to start me out on CIC and arranged for a nurse to come to my home on Monday for training. So my CIC journey will begin in a few days and he will see me in a month to re-evaluate. When I asked about being on blood thinners, he said if it becomes an issue we may consider a suprapubic catheter, so I'd be interested in any feedback from any here who have gone that route. Hopefully it won't be necessary as I've now had the Foley for 6 weeks with minimal bleeding, and only after bike rides. I've been trying to keep my HR under 100 BPM on my rides and that seems to help a bit, but the urine takes a few hours after a ride to clear up. Not sure if that is from being on blood thinners or catheter irritation from the motion or a combination of both. The nurse gave me a plug for my Foley for my bike rides, so the motion is minimized as I tuck the Foley in my bike shorts so there is no pull from the motion of my cycling and exercise without a bag is wonderful! I take my regular pit stops and "pull the plug" to drain my bladder.
Speaking of, Jim, I know you also enjoy your bike rides and I'm wondering if cycling has any negative effects on the prostate, urethra, bladder, etc. that may have contributed to our condition? I normally do 25-30 miles every day and although I wear padded cycling underwear, my manly parts still endure considerable pounding and I sometimes wonder if there might be an accumulative effect.
No doubt I will have questions and,concerns after I begin self-cathing on Monday. I welcome any and all feedback, and special,thanks to you, Jim!
Patrick