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
laura00828 jimjames
Posted
Thank you for your post. Can you tell me how you rehabilitated your bladder? My father is 87 and has a very large prostrate so fluid is being held back. The doctor said this can be dangerous for the kidneys and want him to do the Green Light Laser procedure. Just from the cystoscopy my father lost a lot of blood and has gotten week.(He is on blood thinners) I can not imagine what the laser with all the scabbing, clotting and bleeding would do!
I wonder if this self-catheterization and bladder rehabilitation can be an answer for him.
Thanks in advance for any advice.
jimjames laura00828
Posted
Hi Laura,
Self catherization (CIC) can be a great alternative to surgeries like Green Light. It will protect both your father's bladder and kidneys as well as a surgery. That said, there is no guarantee that CIC will rehab his bladder. It might help some, a lot, or not at all. It depends on a lot of variables including how stretched out it is and how much of an obstruction your father has. Urodynamic testing would offer some clues. You should also know that there are newer, less invasive options now than GreenLight such as Urolift, PAE and Rezum. Again, a good work up, including cystoscopy, imaging and urodynamics will point your father in the right direction. Meanwhile, till he decides, CIC could be the answer. Or it could turn out to be a permanent answer. His bladder doesn't have to get rehabiitated for CIC to work, so look at that as a bonus. Nothing to lose if he wants to give it a try.
Jim
steve05114 laura00828
Posted
@laura00828: My father is 87 and has a very large prostrate so fluid is being held back. The doctor said this can be dangerous for the kidneys and want him to do the Green Light Laser procedure.
If your father is 87, maybe look into an option where he is not put under anesthesia in the operating room which Greenlight Laser TURP requires. There is a new procedure called Rezum which is an out patient procedure and does not require deep anesthesia. Check out the Rezum forum:
https://patient.info/forums/discuss/rezum-have-you-had-this-done--499675
When I had the Foley cath put in, I bled for about a week from the cath tube being passed through the area of the enlarged prostate. The same happened with the cystoscope in your father. This is not uncommon.
Good luck to your father!
Steve
mike588 laura00828
Posted
I agree with Jim, but at your father's age I think he should consider surgery sooner than later and start CIC as soon as possible. My Urologist stopped doing Green Light said it was bloody and messy - he does Button Turp which he likes and Rezum as well, though he's not a big fan of that. For, older men not concerned with Retro Ejaculation Button Turp seems to be the way to go. The less invasive methods require a longer healing period I believe because they rely on absorption of the dead tissue so that takes like 6 weeks and you have to wait and hope it worked, I could be wrong. PAE is a week or so of discomfort but you have to wait weeks or months to see if it worked, and often it doesn't. Urolift is interesting, my father in law around that age tried it and said it didn't work for him. Good luck!
laura00828 jimjames
Posted
Thanks everyone for your replies. Very helpful. I neglected to say that when anesthesia gave my dad a stroke 10 years ago it left his right arm (he's right handed) paralyzed. Do you think CIC is something my mom can do for him? If he wears an adult pad can we only do it once a day? We're really just interested in protecting his kidneys/bladder at this point.
I checked out the Rezum and several people said it hurt so much they had to be put under and several said it did't work.
(They are looking to me for answers and I'm not really finding many good ones)
kenneth1955 laura00828
Posted
Laura I do not remember if you said that the doctor said it was his prostate giving him the problem. If it is his prostate the UROLIFT would be the best for his age. It can be done with a saddle block where your father would not be put out. Any of the major surgery's you have to be put out and I think that would be a problem for your Father. The UROLIFT would relieve the pressure off the bladder. Good luck Ken
steve05114 laura00828
Posted
That sounds like a question for the urology nurse who would probably be training your mother. I am inclined to say yes provided that your mother can and will do this for your father.
Steve
jimjames laura00828
Posted
It's possible he can learn to CIC with only one hand. Go the the Manfred-Sauer website and look for something called I believe "the third hand". Many in the SCI community self cath with physical disabilities. If that is not an option, your mom can help. She just has to make sure to take precautions so as not to contaminate the catheter or area with her own bacteria. Proper prep including disposable non powdered gloves should be used. As to frequency, just keep total bladder volumes under 400ml. The total bladder volume is the catherized volume plus what he voids naturally just preceding it. As long as it's under 400, his bladder and kidneys are protected. If he's over, cath more often. Rezum is frequently performed under twilight anathesia which is much milder and shorter acting than what is usually termed "general". All of the procedures have some failures, but Rezum seems to work as well as any of the other non invasive ones. Re the adult pad. Does our dad have retention or is he just incontient? If he's incontinent he might not have to CIC at all as long as he uses adult pads or an external condom catheter.
Jim
Jim
jimjames
Posted
Just saw a bladder scanner like mine on U.S. ebay for $600. That is the best deal I've seen in a couple of years and about half of what I paid for mine. It comes with a return and restock fee, but you should be able to get your money back if it doesn't work via ebay protection. The way you test it's accuracy would be either against a catherized volume (CIC) or against the scanner at your urologist's office. The listing is for: MEDIWATCH PA-00253 PORTASCAN+ BLADDER SCANNER. I am familiar with this machine so if you have questions, ask away. As good a deal it is, $600 is still a lot of money so you really should have a good use for the scanner as you can get free scans at your uro's office, assuming you have insurance.
Jim
jimjames
Posted
Just to elaborate a little on the scanner and what might constitute a good reason to buy one.
My reason was that after I rehabilitated my bladder to a significant point via self cathing (CIC) I wanted to test things by going off CIC for days, weeks, and even months at a time. Having a scanner at hand, kept things honest for me and made sure that I wasn't carrying around too my urine in my bladder which would then stretch it and undo some of the work I put in compressing it with CIC, not to mention possibly compromising my kidneys. I talk about this some in my "hard/easy" thread about bladder rehab. I also found it useful understanding how my diverticulum worked as I was able to actually visualize the voiding process real time, something that you won't even get at your urologist's unless you do video urodynamics.
Other uses might be for someone who only needs to cath infrequently. In fact this is how the scanner is mostly used in hospitals and nursing homes. By scanning, before cathing, you avoid unecessary catherizations. Another use would be for blader retraining for overactive bladder. With bladder retraining, you want to hold in the urine progressively until you have around 400ml in your bladder. The scanner allows you to visualize what's in the bladder so you don't void too soon or too late. I could also see someone without medical insurance, in conjunction with their urologist using one as part of a watch n' wait
program, to cut down costs. Lastly, it's a very educational device (and a great conversation starter) if you're into that sort of thing
Jim
keith42667 jimjames
Posted
I remember in one thread that you wrote you said that if you have an urge, why not go ahead and self-cath. I think about that every time that I feel its time to CIC but, because of the clock or other reasons I really don't think I'm going to get out much urine. Usually I don't; but I'd say about 1 out of 10 times I'm surprised that I cath out @400 after an NV of @ 30 - 50. Have you changed your mind about the harmlessness of cathing too many times?
I get what you're saying that a scanner would take the guess work out of it all. That would be nice.
jimjames keith42667
Posted
@Keith: I remember in one thread that you wrote you said that if you have an urge, why not go ahead and self-cath.
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I believe I said that to Frank in answering a specific concern of his. I have also told other men to hold back on the urge, for example in the case of bladder retraining for OAB.
Not sure what you mean about cathing "too many times"? In general you set your cath frequency so your total bladder volume is under 400ml. With little or no natural voids this usually comes out to six times a day. Less depending on natural void volumes. Sometimes more depending on factors such as fluid intake. CIC is time proven but like anything else can have side effects such as irritation, stricture, false passage and UTIs. Most are infrequent, temporary and manageable. I've had minor irritation from time to time but only if I hadn't self cathed for a week or so. Nothing that needed to be treated. Never had a false passage or stricture. Haven't had a UTI in well over a year. Averaging 2-3 a year before I started CIC.
Yes, a scanner takes the guesswork out of it and that's why they are used.
Jim
keith42667 jimjames
Posted
Thanks for answering. I just wanted to touch on that because I know I was going to think about it. No one is better to assess what self-cathing is doing to me than myself. I intentionally am using a FR12 rather than a 14 just because I want to minimize the trauma to the urethra and bladder sphincter as much as possible. I've been doing it about a year; between 4 - 5 times in 24 hours. Not experiencing any irritation or any negative effects so far. At 66 I think I could do this indefinitely if nothing better becomes mainstream, no pun intended
jimjames keith42667
Posted
I also use FR12 with the Coude tip. I don't need to do it more than once a week lately, but if I remember I try and do it every day, or every other day, just to keep my urethra used to it. If I skip a couple of weeks then it sometimes stings a little the first few times. Unless something changes, I could do this indefinitely myself, but still interested in new developments, mainstream
Jim
steve05114 jimjames
Posted
@jimjames: Just to elaborate a little on the scanner and what might constitute a good reason to buy one.
First, thank you for bringing this used ultrasound scanner on Ebay to my attention.
I understand the reason to get one and that this one is a good deal. At this time though, I am not ready to get an ultrasound scanner. While I am seeing signs of bladder recovery in urges to pee several times a day, I still need to CIC in order to pee. So at this time, I am not ready to spend the money on an ultrasound scanner. Maybe I will be in a few months, but I am not there now. In about 2 weeks, I need to contact the urologist about my first urodynamic tests.
Can you p;ease provide the link to your "hard/easy" thread about bladder rehab. This website is not the best to navigate
Thank you once again,
Steve
jimjames steve05114
Posted
Steve, Here's a link to the "on/off" CIC strategy thread. "Hard/easy" were terms I used in the copy. I'll keep posting any good scanner deals I see. Or, if you see something interesting, feel free to run it by me. Jim
https://patient.info/forums/discuss/self-catherization-an-on-on-off-strategy--591671
steve05114 jimjames
Posted
@jimjames: Lastly, it's a very educational device (and a great conversation starter) if you're into that sort of thing
---
For many years, I worked at a Department of Energy (DOE) facility a few miles from a site where plutonium had been used. One of the guys at work was being treated for prostate cancer where they inject rice-sized radioactive pellets into the prostate and the radiation killed the tumors. Working for the DOE, he was able to get a hold of a Geiger counter. Once at lunch, he gave a talk about prostate cancer screening. He talked about his treatment and put the Geiger counter in front of his crotch and it started clicking away. My PSA levels have always been OK.
Yes, some scientific and medical devices can be very educational and great conversation starters
Steve