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
amiller jimjames
Posted
Hello Jim,
I have been monitoring you folks for a while now, sitting back and wanting to chime in on UTI issue. I have been Self Cathing since Nov 2010 right after cancer treatment at MD Anderson for a tonsil that went south. I over extended my bladder 45 years of audio/video production shooting/editing with clients all day and not getting up every 3 hours to go. I was voiding 250 and making wine with the 400 left inside. Then I got sepsis and stayed in the hospital for 3 days getting pumped with antibiotics. So I got the pee test by a sweet lady that had heard all the one liners that I was coming up with. The doc said that I was going to stick these tubes up my thing for the rest of my life. Sounded romantic! Well 6 years have past. I have had 4 nurolgist. 2 of which were the tops around the country. One at MD Anderson, the other at UT Southwest. Like you folks have mentioned over and over, the docs all say "live with it".
UTI issue here. I stash my "Magic 3"s (with green grip sleeve) caths in every place I work in, trucks, cars, and backpacks. Before they put the grip sleve on the "Magic 3" I would be out in the middle of nowhere and touching the tube. So I would get infected. I kept Microbid Antibiotic pills with me and take one when that would happen and drink more water. It seemed to clear things up some. But my urine still has an oder & gets dark at times. It has improved greartly since they added the sleve grip, which helps me get through on tight days with no problems. Like all of you, I have the routine down pat. I am a professional at making the right noises when opening up the cath, using it, rolling it up and getting it to the bottom of the trash barrel in quiet bathrooms.
Now the "Over Sharing" part. I haven't read notes from anyone in this group mentioning flushing out the bladder. Through these last 6 years of this daily procedure, I cath in the shower and and when the bllader is empty I take the extension shower hose and run water (near body temp) back up the cath until I feell the least of urgency to go. I pull the cath out and flush the penis out (200mi), rense the cath off and relube it in the cath sleve and reinsert and drain out the rest of the flush. (300mi)(anyone fainted yet?) I do this about 3 time a week. I stay clear more this way than I do, NOT flushing the bladder out and taking a pill. As Bill O'Rielly says: What Say You? Jim, I have high respect of your knowlege on this issue, so let me have it.
jimjames amiller
Posted
Hi Amiller,
You covered a lot of ground and have some interesting observations and questions. I am going to answer them in several posts as others may want to respond to a particular issue.
A lot of folks blame their bph symptons on a large prostate when in fact the problem is really lack of bladder tone. And while an enlarged prostate can be implicated as one culprit, that may not be the case. In fact, the kind of urge neglect you describe over many years can often be the cause of a stretched and flacid bladder. However, when you see a urologist they tend to blame the prostate because they have surgery to correct that! I have rehabbed my bladder through CIC to the point where I no longer have to cath every day or even every week. But to make sure they bladder doesn't stretch back I am now very careful to heed nature's call and find a bathroom when the urge presents.
Jim
jimjames amiller
Posted
Amiller,
Regarding your bladder flushing. It sounds like you may be confusing a pressure washer for bladder irrigation
There are advocates for bladder irrigation and I have done it myself at various times. Not to say what you're doing is wrong, but given your UTI's etc, consider how it's usually done.
I use a syringe barrel filled with around 40ml of sterile saline. The syringe tips mates with the plastic funnel on my catheter. So, after I empty my bladder via the cath, I then mate the cath to the filled syringe and gently pump in the 40ml of sterile saline. I either just let it sit or sometimes do a little gentle pumping (fluid goes in and out) to move things around. I then cath out the fluid and repeat until the fluid is clear. There are other variations and other substitutes for sterile saline I can go into another time. To me, it sounds like you are using too much water, at too much pressure and the fact that it's not sterile water could be a concern. On the other hand if it helps, who knows. Have you gone over your procedure with your doc?
Jim
jimjames
Posted
Amiller,
How many utis are you getting a year and what are you specific symptons? As you probably know bacteria positive urine is common with folks that self cath (CIC) and should not be treated with antibiotics unless specific symptons persist.
Have you read about my not touch "dive bomber" CIC technique? I can get a link later but basically I never touch the part of the catheter that goes into the urethra. You need a fairly rigid catheter here, my choice is Speedicath 12F with Coude tip. Probably work with the cath you describe as well. What are you using to wipe your meatus with prior to CIC?
The dark red color and odor in your urine of course is most probably blood, and perhaps combined with a low grade mildly symptomatic uti that does not need to be treated with antibiotics. This assumes that you have ruled out the other causes such as bladder cancer, etc? I also have blood in the urine frequently and sometimes with odor. My cystoscopy showed no bladder cancer so the docs are writing it off to bph, prostatitis, or a low grade uti. The other cause of blood in urine may be CIC but I can pretty much rule that out since I have gone for over a month without CIC and the issue does not seem connected.
Jim
jimjames amiller
Posted
Amiller,
I was also repeatedly told that I would have tubes in my penis for life unless I had this operation or that. So the doctors were wrong in my case and they very well could be in yours. I also believe in self fufilling prophesies and the power of positive thinking. I'm not saying that you will be able to throw away the catheters at some point but I know it's possible from personal experience that it can be done because I did it.
Did you ever have any operation for your bph? What about urodynamic testing? How many times do you cath each day? Do you do a natural void prior to each time you self cath? If so, how much is your natural void and how much comes out of the catheter? If the two add up to more than 400ml then you're not cathing enough and have to up your daily frequecy.
Jim
amiller jimjames
Posted
Jim
I did go over it with the MD Anderson Chairman of Urology Doc. He grunted a little and changed the subject. The first Doc I had that started me on the caths after the pee test and the sepsis issue kinda went "OoooK" He since retired.
amiller jimjames
Posted
Jim,
I have had 3 standard biopsies on my protate in the last 5 years due to the docs coming up with off the chart numbers thinking I have protate cancer. Then a month ago I came up negative (no Cancer) on a biopsy called sonagram over a MRI image on a leasion they found at MDA. So I am good for a year before going back. Back to my normal routine.
As far as UTIs. I use get cloudy and smelly about once a month. Have not taken a pill in a month since getting back to the power wash! The "specific symptons" you mentioned, My last UTI canceled my first leasion biopsy atempt at MDA right before I went into the operating room. It was to infected to take the chance.
amiller jimjames
Posted
Did you ever have any operation for your bph? NO laser or rotor rooting if that what bph is (new at this short spelling stuff)
What about urodynamic testing? Is that the bladder test to see what I void before having to use a cath? YES
How many times do you cath each day? 4 average
Do you do a natural void prior to each time you self cath? O YEA
If so, how much is your natural void and how much comes out 150 naturally, 250 to 300 with cath
If the two add up to more than 400ml then you're not cathing enough and have to up your daily frequecy. Your right, and I do
jimjames amiller
Posted
Amiller,
I'm curious how you ended up self cathing and not having a surgery like TURP (rotor rooter) or laser? Did they ever offer you medications like Flomax (Tamusolin) or surgery? Did they explain the results of your urodynamic tests to you?
BPH = Benign prostatic hyperplasia (enlarged prostate)
Urodynamics = Usually stick a probe up your anus and a catheter in your penis. They then fill up your bladder and measure pressures, residuals and at what point you feel the urge to urinate.
frank74205 jimjames
Posted
Hi Jim, Did you say you got a UTI and it was not from CIC? I had a urinalyasis ,waiting for results. If it's not UTI and not cause by CIC. what could the reason be for blood in urine output? From 12 pm to 7 am. i had the urge to pee,i did CIC 4 times ,blood was in urine.I went to my URO
he did a bladder flushing,and said their were clots in my bladder,and this was the reason for the blood in the urine. This was Dec 22,now when i got home and ever since ,its now Dec 23,and i have foley catheter in .and i see no blood in the urine. I need your experttise on this?
Thanks very much JIM ?.
amiller jimjames
Posted
I'm curious how you ended up self cathing and not having a surgery like TURP (rotor rooter) or laser? First Doc didn't want to do that. So I got the cath instead. The rest didn't even bring up the word surgery.
Did they ever offer you medications like Flomax (Tamusolin) or surgery?No Sir
Did they explain the results of your urodynamic tests to you? They did and suggested the Self Cath
jimjames frank74205
Posted
Frank,
My kind of UTI is called "colonization" and has no significant symptons. This is normal for people that self cath which is how I probably got it. The blood in my urine may be a part of this and not from clots like yours.
If the bladder flushing and Foley helps that's great. You can also do some flushing (irrigation) at home. I mentioned the protocol in another post. Something to discuss with your doctor as an alternative to Foleys in the future.
Jim
jimjames amiller
Posted
Amir,
The purpose of my questions was to try and figure out if your retention was caused by BPH (enlarged prostate) and a stretched bladder like most of us here. Or, if you have a neurogenic bladder which is caused by brain, spinal cord or a nerve problem. One purpose of urodynamic testing is to find out.
If you don't know the answer then you should find out because your expectations should be related to the cause of your retention.
Jim
amiller jimjames
Posted
The purpose of my questions was to try and figure out if your retention was caused by BPH (enlarged prostate) and a stretched bladder like most of us here.
Jim,
Enlarged Prostate just like you guys is my diagnoses. Thanks for the advice sir. I will keep on learning from all of you as we go along in this journey of "Do It Yourself" cathing.
jimjames amiller
Posted
If it's an enlarged prostate, and not nerve damage, then your bladder has the potential to be "do it yourself" rehabbed
zdzislaw jimjames
Posted
jimjames zdzislaw
Posted
Bladder irrigation doesn't stop bleeding, it just rinses out your bladder. Doesn't seem like it's something you need. At your stage, the process itself (catheter stays in much longer during process) may do more harm than good.
Jim
zdzislaw jimjames
Posted
frank74205 jimjames
Posted
Hi Jim, I don't believe i have a UTI I will get results monday from urinalysis.Do you think i could have these clots from CIC?
Thanks JIm,
jimjames frank74205
Posted
You can get blood clots from time to time with self cathing. Fairly common and nothing to become alarmed about. They should be reported to your doctor but he already knows about them. I forgot what catheter you are using and what size? The idea is to use the smallest size that will work and a smaller size could help with clots. I started with 14F Speedicath but was able to drop down to 12F.
Jim
Howard31850 frank74205
Posted
frank74205 jimjames
Posted
Hi Jim,Thanks for that info,nurse had no idea what cause the clots?Uro is on vacation.Thanks for that info ,i was worried. I use a sure grip catheter 12f ,the water pouch has to be broken then thr liquid distruibuted by going from side to side.Sometims i feel their is not enough hydrophilic liquid on catheter,i can notice this when i take out catheter slowly.
i also use a speedi cath hydrophilic 12 f- i alternate between both of these. I find the sure grip is easier to use since i can bend it.
I wanted to use a condom catheter,however they said it's no good if you have retention. How does this catheter work JIm?
Thanks again JIm,
frank74205 Howard31850
Posted
Hi Neil,I was worried when i got the clots,i thought i had an infection.Ihad a urinalysis ,no infection. Uro office put a foley catheter in for 7 days,he said
this could save a trip to the ER. I'm back to cic and so far everthing ok.I take my time now,no need to rush. The hardest time is 2 am still half a sleep,if their was an answer like the foley catheter ,doing cic not getting out of bed ,would't that be great? They told me the condom catheir is no good for retention? I don't get it?/
thanks Neil hope you get well soon!
kenneth1955 frank74205
Posted
Frank I don't see why they telling you this. If you wore a condom catheter at night you would not have to get up and you would be able to get some sleep. Try it. You can still do CIC during the day...........Ken
jimjames kenneth1955
Posted
Ken and Frank,
A condom catheter is only useful if you can do a natural void with an acceptable PVR. Frank can't do any natural voids, he can only void with CIC. So a condom catheter won't work at all.
Jim
kenneth1955 jimjames
Posted
Howard31850 frank74205
Posted
Hello Frank - thank you for your good wishes. I wish you the same and hope next year will be a better year for you.
I also stagger out of bed at 2 am to do CIC and then have a hard time getting back to sleep. A few days ago I had a visit from the local continence nurse. She suggested I put in a Foley catheter at night so I can sleep through the night and then remove it in the morning and just do my usual CIC during the day. She said she will return next week with the supplies and show me how to do it. So maybe this will help you too. I haven't slept through the night for years now.
I also asked here about the clots and bleeding. She said to just ignore them and continue to do CIC but go very slow and carefully and eventually it would go away. So I have been doing that and now the clots and bleeding have stopped so maybe you do not need to worry about that as well. She encouraged me to stay away from the uros!
All the best to you.
Neil
zdzislaw frank74205
Posted
I use 30mm. You need both condom catheters and the bags to collect the urine. The bags are for unique use each because they have valves. Right now I am using Coloplast.
In the evening I put my condom catheter on, connect it to the bag and go to sleep. In the morning I have around 400ml in the bag, but I had more when I started. I catherize right before and first thing in the morning.
I have great problems urinating during the day (just dribbling) and I have no idea what happens at night that the urine leaks after all. You might try it. I suppose Coloplast can send a few samples? Take care ZD
jimjames Howard31850
Posted
Hi Neil,
I misunderstood last time regarding the Foley. Apparently what the nurse wants you to do is to continue CIC during the day but use a self-installed Foley with leg bag at night.
I think this is a reasonable option and within a short period of time you should find out whether the pro's outweigh the con's.
The pro's hopefully would be an uninterrupted night's sleep. You could also drink more fluids in the evening because they will be eliminated automatically while you sleep. The potential con's would be insertion difficulties, sexual logistics, and possible more UTI's.
Glad the bleeding has stopped.
Let us know how it all works out.
Jim
jimjames zdzislaw
Posted
Hi ZD,
Condom catheters would not work the same way for Frank as they do for you. You have incontience issues meaning that your condom catheter functions like a Foley at night dripping urine into the bag. If someone is not incontinent, like Frank, they would still wake up at night when they bladder signals them it's full. He would still then have to get up and do CIC because he has very little in terms of NV.
Jim
Howard31850 jimjames
Posted
Just wanted to mention in that paper I cited that they show how the prostate grows out of the urethra as a diverticulum after the onset of puberty! It then envelops the sphincter muscle which up to that point has encased most of the urethra. The prostate grows into the sphincter at the bladder neck and also leaves a ring of muscle around the urethra not far from the penis opening. The diagrams are interesting.
Anyway, just want to wish everyone the best for 2017 and may we all experience bigger NVs and smaller PVRs!
Neil
jimjames Howard31850
Posted
Hi Neil,
Just don't let her leave until that Foley is in place! A Happy and healthy New Year to you and everyone else!
Jim
frank74205 zdzislaw
Posted
Hi, Thanks for that info,however i can't use a condom, i don't have NV. I have complete retention,i must CIC to pee.
My question is,why do you have to CIC if you have NV,can pee without CIC?
Thanks for the info,
frank
frank74205 Howard31850
Posted
Hi Neil, Thanks for that info. I'm trying to set my cic to 5 times throughout the day. I'm in bed around 10 30 pm -and up around 2 am ,to cic it is hard to fall asleep ,however i'm workong this out,. The foley catheter at bed time might be a good idea. Let me know how it works out for you.
thanks neil
frank