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
I thought I would post an update now that I've been off self catherization (CIC) for going on 4-5 months. To be honest, I half expected by now that my condition would have started to deteriorate without the catheter, but so far so good. If that had been the case I would have temporarily gone back to self cathing again per my "on/off" strategy in this thread here:
https://patient.info/forums/discuss/self-catherization-an-on-on-off-strategy--591671
But this morning I checked my PVR (residual) via my portable bladder scanner and it was 35ml, so I was very pleased. Symptom wise I have no urgencies, no dripping, decent voids (250-300ml) and only occasional straining, which I could eliminate by walking a little before voiding if I wanted to. My urine is clear, no leucocytes, nitrites, not a trace of blood which is unusual for me. And for the past week or so, I have slept through the night with no bathroom trips. Last time I remembered doing that on a consistent basis was in my 20’s! My IPSS score right now is 5 (mild) compared to 30 (severe) when I started self cathing over three years ago.
I am optimistic moving forward that my bladder rehab via CIC has worked more than I ever expected, but am also realistic that since my prostate isn’t shrinking, and because I’ve had no prostate reduction surgery or are any BPH drugs, that this may not be a permanent situation. But if not, again I would temporarily go back to CIC for further bladder rehab, as well as evaluate whatever prostate reduction procedures or treatments were available at that time.
Jim
hank1953 jimjames
Posted
dennis47445 jimjames
Posted
Fantastic news! I am almost a year doing CIC. It's a little better now than before, but I still have to self-catheter two times a day at least. Once in the morning and again right before dinner. Having an empty bladder is the best feeling. Now if I can be in your situation, no CIC, that would be awesome!
jimjames dennis47445
Posted
Hi Dennis,
Congratulations things are going well! What are your cath volumes and NVs these days? Hope you're not trying to break your 3 second speed record
?FWIW I didn't see my big improvements until after the first year. Don't know if you saw this newer thread yet, but you might find it helpful.
https://patient.info/forums/discuss/self-catherization-an-on-on-off-strategy--591671
Jim
dennis47445 jimjames
Posted
I've been keeping daily records of my CIC's. I don't know what my natural void is, but it has improved. My catheter void, just as estimate is around 200 to 500 ML. I would say it's more like 300 consistantly. Once in the mornign and again in the late afternoon. If I have to go away from the house in the day, I CIC, before going out, so that I'll be good for many hours. An example is today, I have to go and do a wedding 8 miles from home at 10:30 AM. At around 10:15 AM, I'll CiC and so I'll be fine for around 4 hours, so long I don't drink any thing during that time. I'm hoping to be like you, not having to CIC, for 4 to 5 months!!! At any rate, life is so much better not having to look for restrooms when I'm away from home. Much aloha, to you and your's.
jimjames
Posted
Hi Jay,
Regarding reusing a hydrophillic catheter.
Speedicath uses what is a called a hydrophillic coating that bathes the catheter in a slippery solution right in the package. Other hydrophillic catheters sometimes are sometimes packed with a packet of solution you break and then soak the catheter in. In either event, as soon as you take it out, you can use it right away with no external lube. The coating is designed for single use only and will dry up shortly after use.
To answer your question, in theory you could do what you suggest, but there would be inbetween steps of washing and drying the catheter and then applying an external lube for subsequent uses.
That said, there are better choices for re-usable cathters such as their, or other manufacturer's non hydrophillic models. They come in different plastic and vinyl composites as well as red rubber. And while these catheters are also called "single use" people re-use them all the time. Not just twice, but a single catheter could be used for a week or so.
So, if you're paying out of pocket, and cath say 6 times a day, the savings on re-using a catheter are enormous. What most people do in this situation is use a half dozen catheters or so and then rotate them, cleaning and drying between use. Those half dozen catheters could then last a month or so, instead of purchasing 180 a month. The savings would be 3000% if my math is right!
In any event, I would not use the original wrappers, but after using a catheter, would put it in a plastic baggie, then wash and dry, then put it in a new baggie for future use.
When I first started, I re-used red rubber catheters this way, but then decided just to use them once since I had the insurance.
Jim
jimjames
Posted
Let me ammend what I said a little about "better" choices. While I have reused a non-hydrophillic catheter, I have never reused a hydrophillic catheter nor have I read anyone who has. But it's possible that once the hydrophillic is washed and dried, it wiill then perform as well subsequently as the non hydrophillic models do. It's also possible it won't. So, if for some reason you like the shape, feel and tip of the hydrophillic version better than the non hydrophillic, I suppose you could try reusing them and see what happens. Probably not a bad idea to call Coloplast first and run it by them but not sure they will discuss "off label" use with you.
Jim
jay111 jimjames
Posted
Thanks for the heads up on re-use. I haven't done many CIC's yet, just a few with good success using the 28412 speedicath [FG12 standard tip]... no probs getting past the prostate. Seems like if I use and then quickly put back in package and use again 1 or 2 hours later that this would not be enough time for bacterial propagation? Anyway, how does one clean a speedicath? And what sort of lube would you recommend to re-lube it? Thanks for your help. Cheers
jimjames jay111
Posted
Jim
jay111 jimjames
Posted
Thanks jimjames. I probably won't be using them more than once. Thanks very much for the info. Take care- J
roger48166 jimjames
Posted
My urologist recommended the Foley catheter and I've had it in since March with monthly replacements. I was unable to void with over a litre residual. I also have BPH and a neurogenic bladder. Last time I saw him, he gave me the option of switching to IC but I've decided to stick with the Foley for the time being. According to him , it may take up to a year for my bladder to possibly regain its elasticity. That's an awfully long time. If I replace the bag with a plug and allow my bladder to fill , then I can control the stream fairly well . It seems to me that it must have some elasticity. I'm thinking of having the TURP surgery sooner rather than later. Anyone in the same predicament?
kenneth1955 roger48166
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jimjames roger48166
Posted
Hi Roger,
I assume you had urodynamic testing to diagnose your neurogenic bladder? Was it diagnosed as flacid, spastic or mixed? I ask because if you don't have enough pressure, a TURP or other prostate reduction procedure may not work even if you do regain bladder elasticity.
As to regaining bladder elasticity, it can take time. I noticed improvements even past the two year mark with CIC. But again, definitely double check with your uro, or get a second opinion regarding your neurogenic bladder before having a surgery. The fact that you can control the stream with the plug setup doesn't necesarily mean you have enough pressure for a successful surgical outcome.
Meanwhile, you might consider CIC both for lifestyle and medical reasons. Medically, less UTIs, and other urethral complications than Foley. Lifestyle wise, after a month or so, it can become as painless and routine as brushing your teeth, with the freedom of not having anything in your urethra 24/7.
Jim
jimjames
Posted
I saw a used 2D, real time Portable Bladder Scanner on ebay today. Same one I have. Useful for measuring PVRs and therefore helpful for both retention and OAB strategies. It's called Mediwatch PortaScan+
Jim
hebeicc jimjames
Posted
I am 61 years old and have similar problems due to BPH and have chosen to do
the CIC also with great results for almost 3 years now.
I used to get 4 or 5 UTI's a year until I started using the CIC and have not had one since.
I was wondering if you have found any newer procedures that does not have
the side effects like retrograde ejaculation.
I have been avoiding getting a turp for this reason also because I was told my
bladder may not work the same because my detruser muscle may be damaged
and may not help even If I were to get the surgery.
Charlie.
jimjames hebeicc
Posted
Hi Charlie,
Welcome to the forum. Nice to see a fellow self cath veteran stop by! Like yourself, I've been doing CIC for three years now. It's great to see that your UTI's went from 4 or 5 a year to zero. Not unusual because stale urine breeds bacteria and CIC keeps the urine fresh by fully emptying it each time. Myself, maybe one UTI a year, and I can pretty much trace it to a CIC mishap, but then again I've always been susceptible.
Curious, what kind of catheter do you use and how many times a day do you cath? I've been pretty happy with the hydrophillic coude catheters and started at 6x/day and gradually decreased as my bladder got stronger. A few months ago I was able to stop CIC altogether.
As to the newer procedures that don't have sides like retro. I can tell we are kindred spirits here, and thus very picky in terms of risking sexual function with any procedure.
For me, nothing that I would jump into right now, but here's a rundown. All have better odds of no retro than the traditional TURP, Button TURP, GL, Holep, etc.
PAE -- mixed results, some retro and/or decrease in semen volume. Low but significant percentage. Done by IR's, not urologists.
REZUM -- same as above, maybe 5-10% retro.
Urolift -- In theory zero retro, but you have medical staples permanently in your prostate. Mixed results.
Aquablation -- Turp like procedure using water jets. Retro reported in trials as 25% of traditional turp, so that should translate into 10-15% retro. Waiting on FDA approval, probably later this year, so still experimental.
FLA -- No retro so far and in theory should be close to zero retro. Experimental procedure not covered by insurance costs 20K-30K. Only currently being done by 2 IR's that I know of. Definitely something to watch but IMO too early, and not enough data to jump in.
There are other new procedures like iTind and I'm probably missing something as this has been a busy couple of years for new prostate reduction procedures.
Of the list, Aquablation is the most TURP like, meaning the results should be similar with less chance of retro. The others remove less tissue but may not be as effective and durable, especially if you have had significant retention and your bladder is compromised.
Have you had a urodynamic study? If not, that might help answer some questions regarding the viabiity of your detrussor muscles. If possible, find a center that does video urodynamics.
Jim
hebeicc jimjames
Posted
Jim,
Thanks for your response on my question on new procedures instead of the Turp.
The Aquablation procedure really sounds interesting to me which I plan to look into further.
I have not yet had a urodynamic study.I guess I'm a little nervous of what the outcome of that would
be.I will definitely have it checked before I decide on a procedure.
I use a Cure Catheter 14Fr M14 and cath 5 or 6 times a day for the past 3 years without a UTI.
Thanks again for your response and valuable support information.
Charlie