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
For those interested, just started a new thread on a self cath rehab strategy here:
https://patient.info/forums/discuss/self-catherization-an-on-on-off-strategy--591671
Jim
kenneth1955 jimjames
Posted
I thank god for you. You have help many men see that they don't have to have surgery to fix a problem. Right now I don't have a problem But If I every do have a problem going to the bathroom. Reading your post over the years and what you have accomplished give me and many men hope and I would try CIC if I have to. Keep up the good work buddy. You are needed in this world God Bless you Ken
jimjames kenneth1955
Posted
Ken, I truly appreciate that. And thank you for your anti-TURP message. I know you have gotten a lot of flack for it, but sometimes a forceful messsage is needed to wake people up, and at least investigate some more. So please keep on doing what you're doing!
Jim
glenn77 jimjames
Posted
Yeah, where were you guys when I needed you?
TURP is a missile that you can't return to the launching pad if things go seriously wrong!
jwrhn1951 jimjames
Posted
I dont post here because for me the site is unworkable. I made 2 attempts to explain present situation and simply give up but your insight is valuable if you could and I know you have explained numerous times before ...but how do I insert a coude..th3y gave me a bunch today and assumed, I guess, because I've been doing CIC I'd know how to use them..
jimjames jwrhn1951
Posted
Hi JW,
What types of problems are you having with the site? For me, the biggest problem is navigating the threads and finding specific posts. Also, I seem to miss a lot of notifications and end up finding posts sometimes just by accicent. Anyway, I got your notification, so that's good
Can you tell me the manufacturer and model of the coude you're using including the size (FR). As to the insertion, it's easier if I send you a link to some pictures via private mail (PM) as it takes a couple of days for links posted in the public form to get through the moderation process. But I'll wait till I hear back from you here as to what catheter they have you.
Jim
jwrhn1951 jimjames
Posted
I found going to my messages in the profile brings up your ansrer
Im using the Coloplast 28414 Nalaton. they gave me the 28494 Tiamann.
Tried it tonight was like a cat finishing up his kitty litter..Didnt push it definately different fron the straights...
jwrhn1951
Posted
Im using 14 FR
I'd appreciate any links thank you
hank1953 jwrhn1951
Posted
Jim is not gonna like this.
This is a warning ! If you have been using Coloplast straight (nelaton) without any problems, do not use (or even try) to use the coude (tiemann). The coude is trickier to use and can cause bleeding. However, if you can use it successfully (without bleeding), it will get into the bladder more easily.
Hank
jimjames jwrhn1951
Posted
Hi JW,
Check your Private Messages (PM) in a few minutes and I'll send you some instructions and a link to a picture. Could you describe your experience again, not sure what to make of the image I have of a cat kicking up sand
Just to be clear you were previously using the 28414 (non coude Speedicath) and now you're using the 28494 (coude speedicath)?
Jim
jimjames hank1953
Posted
Hi Hank,
Just when I thought it was safe to go back into the Coude waters, you show up
You raise some good points -- well, one good point, the other maybe not so good
Hank, if you're reading this, what was the reason you switched from the straight to the Coude?
If you had no problems with the straight catheter, then what works, works, so maybe stay with it.
However, as Hank says, and I agree, if you have been having difficulty passing around the prostate or other issues cathing, then the Coude might be helpful because that's what it is designed for.
Hank, as to "bleeding", wasn't that something that happened to you a long, long time ago, like when you first started to self cath? I think the statue of limitations might have passed on that one and wouldn't be surprised if you had an entirely different coude experience if you tried one now. Not that you should since the straight is working.
PS: You really thought the Coude was that "tricky"
I'll be happy to send you the same diagram I sent JW 
Jim
jimjames
Posted
Correction in third paragraph -- The question was to be addressed to "JW" not Hank.
hank1953 jimjames
Posted
Hi Jim,
Here we go again. With Coloplast coude, I bled too many times to trust it. First when the uro nurse did it for me. Later when I tried to do it myself, many times. Even when I thought I was good at doing it after a while, I bled again once a while for no apparent reasons. The solution was always going back to the straight, even though it may take few seconds or a minute longer to cath. So it wasn't me, it's ....the coooooude.
Hank
hank1953 jimjames
Posted
jwrhn1951 jimjames
Posted
Thanks for the PM it was very helpful. I've been using the coude for the last three CIC and they are working pretty well. the Uro's cath nurse called this morning and said she could change the Rx with the VA. I told her to wait and I'd call back in another day so I could besure the coude will work for me.
It seems they are a little better and overcoming the resistance in getting into the bladder but I cant really move them around like the straights with out causing a little discomfort espically when removing them.
Thanks again
jimjames jwrhn1951
Posted
That's what the coude is designed for. To navigate around the prostate and/or other obstructions. No need really to "move them around" I just keep the guide bump toward me both going in and going out. In the beginning, when I felt resistance at one point or another, I did twist them very gently back and forth but the twist was very subtle. Later, no need for the twisting as my body adapter and the resistance points pretty much went away. There is also another Coude from Coloplast, the Speedicath Flex Coude. Some men like that a lot, so you might want to have your nurse write you an rx for at least a few free samples that Coloplast and many of the distributors hand out. With the Flex, no need to orient the coude tip, it goes in any which way.
Jim