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Anyone here self-catherizing for chronic urine retention?

Posted , 5 users are following.

jimjames
jimjames

New here and happy to find a community of people with prostate problems looking for solutions. Well, not sure if that came out right, but you know what I mean.

I'd like to keep this discussion mostly about self catherizing. People who are doing it, people who have done it, and people considering it. Hopefully, we can share experiences, concerns, techniques, product reviews, traveling with catheters, etc.

By way of a probably too long introduction, I am 68 years old and probably had urine retention to one degree or another since my 40's. Watch n' Wait finally caught up with me a year or so ago when I found it difficult to go to the bathroom without pushing hard on the outsider of my bladder with my hand. A trip to the urologist confirmed the worst as they drained 1400 cc of urine after I had naturally urinated 350 cc. So that meant I was carrying around 1750cc. A bit much.

In actuality, I was probably not carrying around that much daily since I drank a ton of water prior to the exam, but still, I had a big problem. An ultrasound done prior to the visit showed mild hydronephrosis of both kidneys, meaning there was a back up of urine into the kidney because of too much bladder pressure. Not a good thing as urine is only supposed to flow out of the body, not back into it.

The nurse explained that given the condition of my bladder I would need a rehabilitation period of around six weeks to rest my bladder prior to having any operation. The operation this facility did was the TURP.  She also couldn't promise me that the operation would work, as it would all depend on the condition of my bladder after it had time to decompress. At that point they would do a urodynamic study and come to a conclusion.

In the meanwhile, I was given a choice to either to go home with a Foley catheter inserted for the six week period -- which was the standard procedure -- or if I wanted, she would show me how to self-catherize, and I could do it myself three or more times a day. I'm a kinda a do-it-yourself person, so I said I'd like to try the self-catherization route as opposed to walking around with a lot of plumbing hanging out.

 

As to the experience of self-catherization, I’ll start in reverse time order and say that right now, more than a year later, I’m still self-catherizing and it’s really no more bother, nor does it take any more time than brushing my teeth.

 

Well, it is more inconvenient for sure, especially when away from the home as one needs both supplies and ideally a clean place which public bathrooms aren’t always. But most of the time I do it at home, it takes around five minutes from beginning to end, and there is no pain or discomfort at all. What it accomplishes is that it allows me to completely empty my bladder any time I want, without any drugs, without any procedure. And it has rested and partially rehabilitated my bladder to a point where I can now void naturally about half of the time..

 

The reason I started in reverse time order was that I didn’t want to scare anyone off with my initial experience with self catherization in the doctor’s office.  It was not good.  I almost fainted leaning up against the wall with the nurse trying to hold me up with one hand while holding a tub receptacle in the other that was starting to overflow! That, and then several trying weeks of discomfort, and a series of UTI’s ending in wicked case of epididmymitis where my scrotum grew to the size of a softball and where just walking was agony.

 

Looking back, I think the majority of those problems could have been avoided if the clinic offered me proper training, supervision, and timely treatment for the UTI’s.  I have since other accounts where the initial process was not all that bad.

 

A few months later, I left that clinic, found a concerned doctor who treated the UTI’s, and then I went about researching and experimenting, eventually finding a catheter and  technique that was relatively fast with no pain. And I have been UTI free ever since.

 

All this begs the question why I’m still self-catherizing and I never had that TURP. I was supposed to have the urodynamic test after six weeks, but because of my discomfort and UTI’s it was put off. When I finally did have it, they found I was a candidate for TURP, however by that time my self-cathing was getting a lot easier and I decided, OK, no rush now.  So I put things off for awhile.

 

Reasons for putting off the operation were: (1) An operation is an operation and no guarantees things would get better; (2) ) I was concerned about retrograde ejaculation that my doc said was a given with the TURP; (3) I wanted to explore and/or wait for less invasive techniques to come along, possibly that did not involve retrograde ejaculation: (4) The devil that you know is better than the one you don’t – i.e.  I had a technique – self catherization – that, albeit an inconvenience, was working.

 

So right now, I’m on the fence. Still thinking about getting a procedure,  just not sure which one, and not in a rush. I have tried the usual drugs (flomax, etc.,) to see if I could stop or minimize self-catherization, but did not like the side effects. More recently I tried daily Cialis for BPH, and initially it worked very well, and I actually stopped cathing completely for around six weeks, but then had to go back. Now I take the Cialis only occasionally, as I’m also not crazy about its side effects excep,t when, of course, they can come in handy from time to time in the bed department. Meanwhile, catching away, and starting to visit forums like this to see what new things are presenting themselves in the way of procedures, etc.

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1 like, 12 replies

12 Replies

  • derek76
    derek76 jimjames

    Posted

    Have you considered the other options to TURP? There are several laser procedures with as good results that are day surgery and quick recovery. Still a good chance of retro with them but is that really a problem?  If your prostate is not too big there is the new Urolift procedure.

     

    • jimjames
      jimjames derek76

      Posted

      I had retro ejaculation on Flomax, and while it wasn't terrible, I was happier without it.  That's not to say I couldn't adjust, it's really balancing one thing against another, and right now, given my life style of being at or near home a lot, the self-cathing isn't really that much of an inconvenience. One day, it might be and then I'll see. I am following with interest the new Urolift procedure.
    • jimjames
      jimjames derek76

      Posted

      I had retro ejaculation on Flomax, and while it wasn't terrible, I was happier without it.  That's not to say I couldn't adjust, it's really balancing one thing against another, and right now, given my life style of being at or near home a lot, the self-cathing isn't really that much of an inconvenience. One day, it might be and then I'll see. I am following with interest the new Urolift procedure.
  • RonTexan
    RonTexan jimjames

    Posted

    You sound like an American. If so, you have choices. Read my posts about my experience or answer this message and I'll tell ypu how i solved the problem. Ron
    • jimjames
      jimjames RonTexan

      Posted

      You sound like an American

      ------------------------------------

      Guilty as charged. Not sure which problem, but how did you solve it?

    • jimjames
      jimjames RonTexan

      Posted

      Ron, Just read some of your posts so I guess you're talking about HOlep at Mayo? It sounds better than TURP but from what I've read it still results in retro ejaculation. I'm certainly not ruling it out, but right now prefer to wait for something that doesn't affect ejaculation like possibly Urofit, or perhaps something new on the horizon.
    • RonTexan
      RonTexan jimjames

      Posted

      True, Urolift is the only method that will preserve ejaculation. The meds will cause RE just as surely as Turp, Green Light Laser or Holep. That's a common side-effect of all of them and I've had that effect so long that just being dry doesn't bother me. Eventually the meds will drop your libido to zero and you'll have erectile disfunction as well. Maybe permanently. 

      I researched urolift thoroughly and decided to have it done with Dr Kella in San Antonio but my prostate was too large and had a third lobe so I didn't qualify but I continued to recommend it to readers of these forums who do qualify.  Since having my Holep I have read several posts by guys who had poor results from Urolift, much worse than my Holep so now I don't know.

      There is a question I would have answered before I would have Urolift, though; I would ask a Holep surgeon like Dr Humphreys if the stitches left by Urolift would interfere with Holep. If so, I would not do Urolift since it is a stop-gap measure usually good for at least three years, probably more but doesn't work well for some patients or maybe as done by some Drs (?).  

      At any rate, as I have said many times, if I could go back a few years, the first time I was prescribed Flomax or others I would go straight to a Holep surgeon and get the problem fixed permanently. I would never take the meds at all.

      Today is the tenth day after my Holep and I'm still having to deal with a leaky bladder since the third lobe was protruding up into the bladder and had stretched out the bladder mouth to the size of a fifty-cent piece. That's going to take some time but I am progressing really well and I haven't even started the Kegel excercises. I'm wearing Depends but I wore the last one almost 24 hours so I'm going to be fine in a couple of weeks.

      Whatever you decide, post your experience here. We have the ability to help thousands of BPH sufferers. Everything I know about TUrolift, turp, Holep, Green Light, open prostatectomy (recommended by my urologist - Ouch) began with a mention in these forums and furthur research on the web.

       Good luck!!

         

        

    • jimjames
      jimjames RonTexan

      Posted

      Hi Ron,

      Thanks for your insights and thoughts. You've been through the mill on this and that's probably the right process for a lot of us to follow - i.e. explore all the avenues.

      Great question about the Urolift stitches and Holep. I would also like to ask about the reversability of the operation, and also if the stitches would interfere with my self-cathing should I ever decide to go back.

      My initial thoughts regarding Urolift is that I'm very interested, but given my success with the self-cathing, I have the luxury to wait and see how the procedure plays out over time with others.

      As I mentioned before, self cathing is working for me. I can completely empty my bladder with no operations, no side effects and no drugs. The inconvenience and logistics of carrying around supplies, and a little longer in the bathroom (5 minutes) is the trade off.

      At some point, maybe it will not work so well, or I will find something like UroLift that will make me pull the trigger. My current urologist only does the TURP (button turp) so I will probably get a few more consultations to discuss other options. There was a study, for example, on prostate  Botox injections. And there's also a procedure in Israel I've heard about.I know Mayo is excellent, and Cleaveland Clinic is also highly rated, so at some point I might look there.

      You mentioned Kegel exercises. Is this something recommended after Holep? I've thought about doing them myself to see if I could cut down on the frequency of self-cathing.

      Good luck with recovery from your Holep surgery, and let us all know how things are going!

      Jim

       

    • RonTexan
      RonTexan jimjames

      Posted

      Kegel exercises are recommended after any procedure that causes a sudden ability to void and your valves are not able to hold it without help from a swollen prostate to slow the flow. in my case my third lobe had stretched the bladder neck to the point that immediately after surgery for a few days, any urine that entered my bladder immediately ran out the bottom unimpeded. Nothing I could do to stop it.  I have done no exercises at all so far but I'm getting a half hour warning before I have to go and the urge only occurs every four hours or so. So, I'm wearing the Depends but just as a safety measure as they are staying dry as a bone. 

      I don't blame you for self-cathing if you can handle it long term. No one wants to go under the knife (or laser) unless they have to. And there is no assurance I suppose that someone else's results from Holep would be as favorable as mine. Just be very wary of long-term effects of the meds. If you are taking them and have to in order to live normally then do something else, the meds are devestating. if you are not taking them then good for you. I had no choice, they just didn't work any more and that is the inevitable result, they have a life and then you are stuck with surgery as a solution.  

      I'll post again in a few days as to my progress. 

    • emilky
      emilky RonTexan

      Posted

      I am in the same boat. I would like to read your posts
  • RonTexan
    RonTexan jimjames

    Posted

    I didn't answer your original question about cathing. I almost waited too long before I contacted a surgeon and almost came to full retention. My uro gave me a catheter and I used it one time, voiding about 250 ml. When I took it out it was bloody so I decided that an UTI was inevitable.  Fortunately, the Jalyn kicked in again that day and I was ok again, dribbling enough every hour or so to get by until I could get to Phoenix. I had to wait about a month and that was tough. I don't believe I could have made it any longer.  So, I went from that condition, some pain with urination, unable to use a catheter safely, unable to wait even two minutes to find a bathroom, unwilling to use Depends (that was really stupid), unable to take a road trip at all, ED, maybe permanently, limiting liquid intake, nothing after 8PM,  taking sleep aids so I wouldn't wake up to go so often (now I'm dependent), my life centered around my prostate. In short you can wait too long and it ain't necessary. .    
    • jimjames
      jimjames RonTexan

      Posted

      Ron: "I didn't answer your original question about cathing...unable to use a catheter safely, ".

      -----------------

      Yeah, well, that happens in these forums, but I did learn something about Urolift which is good!

      Hard to tell from your brief description what actually went wrong with your self-cathing, but it sounds like it was a "slam, bang, thank you ma'am...take the cath when you go out the door, slam" kind of thing.

      And that's unfortunate if it was, that the doctor or nurse didn't take the time to show you how to do it, tell you what to expect, and not to have givenen you phophalaxis antibiotics, because as you suggest, the initial trauma of self-cathing can cause uti's.

      Frankly, my medical team didn't do a much better job preparing me for what to expect, and they really dropped the ball by not treating me right away for uti's.

      That said, I'm pretty sure most anyone can self-catherize safely, as long as they are trained properly and realize that during the first couple of weeks or so, they may have some discomfort, bleeding, frequency, etc. Not really so different than the symptons people experience after a prostate operation or procedure, but probably not as intense.

      From the lack of direct replies to this thread, I'm assuming that not a lot of folks here having taken the self-cathing route, and it's not surprising since doctors generally don't offer it, especially as a long term solution, except of course in the case of SCI (spinal cord injury) community, where self-catherization is a standard procedure that most in that community seem to prefer to a permanent foley catheter..

      That said, I still do hope to hear from others, with their experiences -- or to answer any questions people may have who are curious if self-cathing might be a solution for them, either short, or even longer term like myself.

      -- Jim

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