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.
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
frank74205 jimjames
Posted
Hi Jim , Thanks for that informative info on CIC/ I started Oct 5, and 7 times a day {24 hours} is a lot of cathing. I don't know why ,doctor said 3 or 4 times a day.I don't know why they didn't put you on Avordat ,this med is supposed to shrink the prostate. I was told it takes 6 months to start working. Iv'e been taken this med for 5 months. I had a foley catheter for almost 5 months,and now just started CIC. I'm learning. This is far superior to the foley bag.They also wanted to do Turp on me. AT 87 years old i'm not comforable with this. Any ideas why i have to cath so much?
jimjames frank74205
Posted
How much do you urinate without the catheter? And how much comes out of the catheter on average?
Jim
frank74205 jimjames
Posted
Hi Jim, I cannot urinate without self cath. I have been in retention 5 months.just started cathing thanks to your info i'm learning. Sometimes 450 ml comes out mostly 350 ,250 .200. I have to cath 6times a day.I wish i could cut it down to 4 or 5 times. Any of your sugesstions i would appreciate.
thanks much,
jimjames frank74205
Posted
Hi Frank,
Sounds like your cath frequency is about right, as ideally you don't want more than 400ml in your bladder at any one time. The idea is to keep it from distending so that it will rest and hopefully heal over time. Hopefully you will be able to cut down the frequency at a later date if you are able to have natural voids.
Are you having any issues with the process itself? I know you are relatively new at it. I personally had a difficult time the first couple of months, but over time it really became as easy and routine as brushing my teeth.
A good catheter helps and after trying about a dozen I ended up with Coloplast's Hydrophillic Speedicath with Coude Tip. Of course we all have different anatomy's so what worked best for me might not work best for you.
Jim
michael72708 jimjames
Posted
Hi Jim,
Just had a PAE with Dr Bagla. Pretty much good report as everyone else has reference to the facility and the care. My issue is that I had virtually no natural urination and only through CIC. So I'm afraid I will have to continue.My question is how long till you were able to basically not cath. Was it about 2 years?
jimjames michael72708
Posted
Hi Michael,
It was around two years before things worked normally. These days -- no urgency, no dribbling, acceptable PVR's, and unless I drink a lot of fluid after dinner, 0 to 1 trips to the bathroom at night.
That said, there was progress before then but not always linear. After several months of self cathing (CIC) 6x/day noticed improvement in natural void volumes, etc. Months later with the help of Daily Cialis I was able to stop cathing for days (2 months at one point) but still was double and triple voiding a lot, plus using time consuming voiding techniques like Crede's manuever and reclined positions.
Finally decided that if the natural voids didn't come easily, I would just cath instead. Figured not only better for the bladder, but also easier, since cathing by then was second nature. Why walk around for 10 minutes at 3am to get the urine flowing "naturally" when I can cath and be back to sleep in 2 minutes?
So I went back to cathing, sometimes back to an agressive 6x/day schedule when I had time, and pretty much reconciled that this would be it for life, but honestly cathing was so easy and natural by now that continuing it on forever didn't bother me. At this point I tried if at all possible to keep total fluid in my bladder under 400ml, that would include the sum of both a natural void and cath volume.
And then, after some more months, things started working pretty normally without CIC. Probably won't work for everyone, but I doubt I'm unique, so my guess is that self cathing can rehab the bladders of many others out there as well, if not better than an operation, if you give it a chance.
Jim
michaelmike michael72708
Posted
I am in the same situation as you regarding no natural urination, and depending on CIC. I had a PAE with Dr Bagla 3 months ago, and it has not resulted in natural urination. I have however noticed that inserting the catheter meets with less resistance. I will be interested in hearing about your results over the next months , which will probably be better. Of course each person has a very specific individual situation.
michael
jimjames michael72708
Posted
Michael,
For how long haven't you been able to naturally void? Was it a gradually deterioration or did you all of a sudden lock up? Have you had urodynamics done to check nerves and voiding pressures, etc.
While I could barely void naturally prior to CIC (I used Crede's Manuever), once I decompressed my bladder I was able to have some natural voids right from the beginning although small.
A few months later my urodynamic test suggested that I had the pressure necessary for natural voids with the problem being my prostate obstruction. Of course my prostate hasn't shrunk any and I can now void fine naturally, but the point is I did have some natural urination from the get go and what was termed a promising urodynamic test. "Promising" in the sense that they thought I would be able to void OK after a TURP operation which I never got.
Jim
Howard31850 michaelmike
Posted
All the best.
Neil
michael72708 jimjames
Posted
Hey Jim,
It was a gradual loss over a year of cathing although there was natural urination early in the morning and late at night. Uro dynamics were positive.
My situation is I'm trying to cath 4x a day post PAE. During the day I produce little urine but much more at night. Therefore one of my caths is at 3 or 4 when I wake up from a 3-400 full bladder. The othe 3 caths are only around 200 or less sometimes. Would you still keep up the 4x a day routine even if as lot of times it was under 250? I had some nice natural urination this morning. Hoping the the PAE is starting to work.
jimjames michael72708
Posted
As long as you stay more or less under the 400ml threshold, you might experiment cutting down the frequency. It might even possibly stimulate more normal urination. You can always go back to more cathing if you see no progress.
Since you're really not having much in terms of natural voids, do you exercise the detrussor muscles at all while you cath? I used to do that by pushing out gently while cathing. You know if you're using the muscles because the urine will come out of the cath faster. Didn't do it all the time, but a little each day.
What was your situation before the PAE? Were you able to urinate naturally then? What did the PAE help and what if any did it make worse?
Jim
michael72708 jimjames
Posted
I just had the PAE on Oct 25. So not many changes yet. When I try squeezing the detrussors when using the speedicath it doesn't really do anything. Either I'm not squeezing hard enough or muscles too week. Prior to that I was cathing first thing in morning and before bed. PVR gradually began to rise from 250 to 350 to 450 or so. Ithen began to cath more to bring down the residual. I decided to have the PAE cause I thought my bladder might be getting compromised and eliminating obsstruction would help perhaps along with CIC
jimjames michael72708
Posted
When I used to squeeze during CIC it was gentle and just maybe for five seconds here and there. Again, I noticed the urine flowed faster. Forgot if this was with FR14 or later with FR12. Maybe drop down to FR12 if you're using 14 to cause a little more resistance. That might help but probably more important is the natural urination that is starting. Did you have any natural urination prior to the PAE?
Jim
michael72708 jimjames
Posted
My natural urination was limited to just a little in the morning and before bed.
I did try squeezing a bit harder and saw a slight increase in output while cathing today. I am using a sppedicath 12.
I experimented with cutting back to 3x yesterday and each pvr was about 400. My big urine production is while I'm sleeping so I let myself wake up naturally at usually 3 or 4 am and cath. Usually at that point its around 400. This morning at 4:30 I woke up and peed a long natural pee. Then I cathed and had a 500 pvr. Seems after 400 ml I get the urge. I suppose that's the point. To keep the bladder empty enough so that begins to happen at a lower pvr. Seems like a catch 22 or maybe cath22. Do you keep your bladder more with 2-300 to shrink it but you eliminate natural voids and urges.Or max out at closer to 400 so you get to pee naturally but not decompress the bladder as much. Hoping the prostate shrinking from PAE will help too.
BTW I saw the style of cathing that you and I came to naturally referred to by nurses as No Touch Method
jimjames michael72708
Posted
All sounds good and good questions as well. Promising that you are having natural voids albeit with a full bladder. And good that you are able to move the urine faster by pushing down during catherization although I personally wouldn't push too hard but that is just based on instinct and not any medical knowledge.
So yes, the idea is to keep bladder volumes low, let it regain tone and elasticity so among other things it will signal you earlier when it is full. Personally, in order to accelerate the process I'd probably go back to 4 or even 5 times a day to keep volumes low and see how that goes. That said, even at that schedule, there will probably be times here and there when the bladder will fill up over 400cc to give you a long stream of natural urination like you had today. But I think you have to weigh that long natural stream against the fact that your bladder was being stretched at that point by holding too much fluid. So, once in a while but not as a habit would be my thinking here and that corresponds to what I did myself as I had times where I went over 400cc but there were also times when I threw in an extra cath here and there just because I wanted to go even more under the 400cc theshold to give my bladder even more of a rest.
Jim
jimjames
Posted
Just wanted to add two things (wish they had an editing function here !) --
Re "pushing' -- it may or may not be that it isn't the force but the fact that you're not isolating the muscles well enough. So play around with that as well as pushing a little harder.
Re "no touch" -- I'm sure others have independently used my "dive bomb" technique that I sometimes refer to as "no touch". However, the common usuage of "no touch" has to do with a plastic sheath that some catheters come with. The idea is that you feed the catheter by holding onto the sheath (it slides) and don't touch the catheter. Speedicaths don't come with such a sheath but I have tried others that have and they do work. I still prefer dive bombing because it takes less time as you just push it in almost one motion (brief pause at the sphicters), as opposed to keep feeding it in a little at a time.
Jim