Self Catherization. An alternative to Turp, Greenlight, HoLEP...?
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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
john11426 jimjames
Posted
So I am in about the same shape you were Jim 2 years ago when you started self catheterization for apparently the same reasons. My prostate was estimated at 100 g, which is large for a TURP due to the fact that so much tissue needs resection and that requires a lot of operating time, which could exceed the 90 minutes safe limit.
What was the estimated size of your prostate? This may bear on the reasons for your excellent results. I think the naive assumption is that the bigger the prostate the more obstruction and the worse the retention. If your prostate didn't shrink along with your bladder when you self catheterized for 2 years and I see no logical reason why it should, you would still have the conditions which caused urinary retention and atonal bladder in the first place according to the naive assumption. So presumably, the prognosis would not be excellent, i.e. when you stopped catheterizing altogether, your bladder would eventually slowly go back to a flaccid state. However, I believe it is more subtle than that. Micturation is a dynamic process which involves muscles and nerves and coordination of these elements as well. It is not so simple as larger prostate = smaller diameter of urethra in the prostate = smaller flow rate. I have also heard the analogy of "ball valve" to describe the effect of an enlarged median lobe of the prostate that protrudes into the bladder. It is believed that this lobe of tissue flops over the outlet of the bladder when the detrussor muscles contract to void the bladder. So it is believed that lateral lobes and median lobes can contribute to the problem. When you take medication like terazosin or Rapaflo, you are blocking the effect of smooth muscle contractions which constrict the urethra going through the prostate. So it is not just a static size issue.
Here is the idea that I think might shed some light on the excellent results you have obtained from self catheterization. It appears that you have retrained your bladder muscles and the muscles that surround the urethra that goes through your prostate in such a way that during micturation a normal flow rate can be maintained despite the enlarged prostate. If this is true, it is big news for urology. This could mean that TURP is not necessary to cure the symptoms of BPH. Resecting the adenomatous tissue obviously can alleviate the symptoms too but it is not the only way this can be accomplished. CIC is obviously less invasive and has less risky. If the results are lasting they could obviate the TURP procedure, at least for patients like yourself. I would really like to commend you and to follow your story over time. It has given me a lot of hope, and your experience could benefit many other people. I just hope your urologist will see the potential for doing good by encouraging other patients try to duplicate what you have been able to accomplish on your own. If he is worth his salt as a scientist and as a doctor, he will. If he is merely monitarily motivated, he may not.
jimjames john11426
Posted
They also told me I needed I needed a catheter to decompress the bladder for 12 weeks prior to a TURP operation for a better outcome. But they also gave me the option for self-catherization (CIC) instead of the Foley. I chose CIC.
FWIW the bladder spasms and bleeding were very much apart of my initial CIC experience, and you can throw in a couple of vicious UTI’s one resulting in epididymitis that I would not wish on anyone, except maybe to any urologist that doesn't take UTI's seriously!
But then I switched doctors, got rid of the UTI, found a better catheter, and my body started to adjust to CIC to the point that I decided to put off the TURP.
Four months ago I figured it was CIC for life as long as things didn’t get worse, or unless a better operation came along. And while I was not thrilled, my quality of life was significantly better than ten years
prior to CIC. So bottom line I was OK with it. I was used to it. It was no big deal.
Then this very nice and perculiar thing happened and I started emptying my bladder without the CIC. Still not sure, nor is my doctor, exactly what happened, but it did, at least for now. Currently, my PVR is under 50cc most of the time, sometimes close to zero, and never more than 100cc. My doc said he would be more than happy with that outcome for his TURP patients, but of course I didn’t risk any of the side effects of TURP. My IPSS score varies a little but it was 6 last month which is "mild". It was 29 (severe) just before I started CIC 2 1/2 year ago!
So what happened? Well, my bladder did decompress and take a rest, for sure. It obviously regained some elasticity and my detrusor muscles I guess started coming back to life. The nerves also seemed to start firing better because I now get the urge to urinate at around 300cc, instead of 1000 or so. Does all that account for what has been a reversal of misfortune? Don’t know. I have other theories, but for another time.
As to moving forward, while anything is possible, I don’t think stopping CIC will reverse the progress. For one thing I’m not abusing my bladder like I did in my youth by not heeding nature’s call and letting it stretch out. Now, when I feel the urge at around 300cc, I seek out a bathroom and out comes 250-300cc. Since I’m emptying almost completely, I don’t see the risk of it stretching out again. I also take my time and work on relaxing my sphicter muscles which is just as, if not more important, than pushing with the detrussors. Maybe that is a factor, who knows.
Yes, you would think my urologist would say, “Hey, look, it it worked for JIm, so let’s stop the TURPS and get people on Jim’s program!”. Sure
In reality is he just thinks I’m an ananomly, and I don't think gives it more thought than that. And maybe I am, but I don’t believe in ananomly’s. Maybe my results won’t happen to everyone, but my gut tells me they would for some.
To answer your question regarding prostate size, it’s been measured at around 70g by ultrasound, MRI and CT scan, but not by TRUS. But as you know, prostate size does not necessarily correlate to BPH.
So John, you seem to have a real understanding of what has gone on, and some thoughts why. So my question to you is why are you walking around with a Foley in you waiting for an operation, when you could give CIC a try for maybe four months! CIC has got to beat a Foley any day for the short term, and for the long term, well, you can always have your operation in the future if you don't like it.
Jim
michael72708 jimjames
Posted
Yes, I figured you were replying to my question. I haven't actually heard of urethral wash but I did read that the 1st half inch or so of the urethra is where there can be bacteria. I use the same method of insertion that you do. As for cleaning, after my morning shower I do nothing addt'l except for the insertion and before bed I use a surface cleaning of penis with a provo iodine pad. So far no UTI's.
The funny thing is that the results of the Urolift were so stellar during the day but left me waking up everynight after 2 hours. We know Urolift does nothing to effect PVR However since discussing with you I have started cathing before bed and sleeping pretty much through the night. My PVR hasn't seemed to diminish even though I increased my cathing frequency. Before I stopped (for a month) every morning cathing I was down to 250-300 ml. now I'm up ro 400-450 ml.
Did I see you thought possibly the tamsulosin was contraindicated in trying to shrink the bladder?
Thanks!
jimjames michael72708
Posted
I didn't say anything about tamsulosin being contraindicated in trying to shrink the bladder. What I might have said is that I see no reason to take Tamsulosin if you're doing CIC because CIC will empty your bladder completey without the Tamsulosin. However, if you're not doing CIC then Tamsulosin in theory will help reduce PVR. You can make a case that Tamsulosin will allow you to decrease the frequency of CIC but you have to weigh the benefit of that against the side effects of Tamsulosin. Personally, I choose to increase the frequency of CIC over Tasulosin.
How long since the Uroloift and how long have you been doing CIC. It took me many months of CIC to see any improvement in bladder elasticity and close to 2 1/2 years on CIC before I could put the catheters away and void on my own with normal PVRs.
Jim
michael72708 jimjames
Posted
About one year since the Urolift and CIC for about 9 months. Unlike you, once my residual was down to 250-300 PVR I decided to stop cathing. My PVR, after a month of not cathing, expanded to 4-450 ml where it is now. Definitely the Urolift was not touted on it's own to deal with PVR although I see your point about emptying more. I'm quite pleased to be sleeping through the night!
michael72708 jimjames
Posted
Do you think that cathing more frequently inhibits natural voiding in between? Of course the frequency would be reduced but I mean the actual urinating process itself.
jimjames michael72708
Posted
There are various guidelines out there on frequency. The usual is that if your PVR is more than 400cc you should cath more often, and if less than 150cc, cath less often. That said, it's often confusing if they are just talking PVR or total bladder capacity (CIC volume plus natural void volume). I took the conservative approach (total bladder capacity) figuring that it would decompress my bladder more. Therefore even if my PVR was less than 400cc, say 300cc but if my natural void was 150cc, (total volume 450 (300 plus 150) then I would increase the frequency.
FWIW I found another schedule on the internet. Can't say I followed such a rigid formulat but in prinicple seem sound.
1. If you can, try and void naturally immediately before each self catherization.
2. During the day, self catherize every 3-4 hours.
3. Measure both amounts passed naturally and drained out of the catheter.
4. If your catherized amount is 400ml or more, self catherize more (every 2-3 hours). NOTE: In my case I eventually used the total volume figure not just the self-catherized figure. That said, I did start with the catherized figure in the beginning.
5. When the amount catherized is less than 150ml on 2 occasions, increase your catherization interval to every 6 hours or 4 times a day.
6. When the amount catherized is less than 150ml on 2 occasions (on the previous schedule) increase your catherization interval to every 8 hours, or 3 times a day.
7. When the amount catherized is less than 150ml (on previous schedule) increase your catherization interval to every 12 hours, or 2 times a day.
8. When the amount catherized is less than 150ml (on previous schedule) on 2 occasions increase your catherization interval to every 24 hours, or 1 time a day.
9. When the amount catherized at the 24 hour interval is less than 150ml on 1 occasion, self catherization may be stopped.
Jim
michael72708 jimjames
Posted
I'm a bit concerned that when I stopped cathing completely at 250 PVR for a month my bladder expanded to 400+ ml PVR. I wonder if It means I'm not a good candidate (possibly too large a prostate pressing on urethra?) and bladder will stretch again.
Michael
jimjames michael72708
Posted
Jim
michael72708 jimjames
Posted
My complaint about the late evening cathing is because I'm waiting till just before bed so as to increase chances of more hours uninterrupted sleep. Problem is I'm so sleepy that quite often I pass on it. As you suggest, I might try it a bit earlier and see if it stll has the same results.
The thing that really surprises me is that I have absolutely no urgency or frequency during the day but once I go to sleep, if I haven't cathed, I wake up every 2 hours to urinate.
I looked up the Speedicath hydrophilic and they do tout them as fairly safe from plasticisers. I may switch from the HiSlip Hydrophilic but I have to see what they say about their safety.
Michael
jimjames michael72708
Posted
Maybe I misunderstood your cath schedule, but this was my understanding:
I thought what you said was that during the time you catherized before bedtime, your morning residual was 250-300cc. But, a month later, when you didn’t cath at bed time, then your morning residual was 350-400. Did I get this right?
If so, my point was that the difference between the two amounts (100cc) had nothing to do with bladder function or the monthly interval but could be attributed to the fact that when you didn’t cath at night you went to bed with 100cc more in your bladder. Therefore, It then makes sense that your morning residual would be 100cc higher, assuming you didnt void during the night or that your night time voids were about equal.
I'm pretty sure I checked out the Speedicath in terms of whatever plastic was deemed bad or questionable and it did pass. The important thing is to get one with a coude tip. I tried many different blands and the speedicath was the most comfortable for me, but everyone's anatomy is different so your experience may be otherwise.
Jim
Carry-on_CMDR michael72708
Posted
Carry-on_CMDR michael72708
Posted
michael72708 jimjames
Posted
Since my cathing is on a more random basis and I don't collect any urine in between, I'm measuring it almost like walking into the urologist office when they do a sonogram and give you basically a snapshot of what you're retaining at that moment. I think that works well enough for me to get a general idea of my PVR. When it almost always shows 400 or so for a week or 10 days I assume I'm retaining somewhere around that amount. Previously, before I stopped cathing for a month it was almost always between 250 to 300. As I said, it's not as precise as your method but the consistency of the results convinces me it's close enough to be indicative of what's being retained.
jimjames michael72708
Posted
The only scenario I'm talking about is comparing PVRs from first morning voids. If what you are saying is that your PVRs from first morning voids is greater when you have not catherized before going to bed, then my position is that you cannot extrapolate from that that your overall PVR (or bladder function) has changed. The difference as I see it is simply that you started out with a tank less full.
However, if you're talking about any other scenario, then that's another story.
Jim
jimjames
Posted