Self Catherization. An alternative to Turp, Greenlight, HoLEP...?

Posted , 74 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. smile

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

 

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  • Posted

    @ kevdarada (from Cialis thread) "... I'm a little weary as to what to do now after reading some info here, I'm still leaning toward self cath,  it seems expensive. But I only live once and I'm not getting any younger .."

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    With no insurance, self cathing can be expensive if you use single-use hydrophillic catheters, like I do.  However, there are multi-use catheters, and catheters labled single use (red rubber for example) that many people use for up to a week or even more at a time. If you use the same catheter multiple times then the costs are quite minimal.

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    • Posted

      Hi Jim, as promised I took the initiative and researched a little on CIC products. Here's the deal, my wife is a LPN and is willing to help me start the process, I found a website that sells box of 100 intermitant cathereds.  But I have couple of issues, not sure of the "french" size, and if the brands are good or not.  The two I'm looking at are "GentleCath Intermittent Urinary Catheter" which come in 10,12,14,and 16 .    And the second is Amici Plus , in sizes 8, 10,12, and 14.    But I have no idea what size, is there a way to measure , or did you just use trial and error??  Thanks for any advise. 

      Kevin

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    • Posted

      Hi Kevin,

      The rule of thumb is that you use the smallest French size (FR) that works. (smaller the number, smaller the catheter diameter, the length is the same). Most men start with FR14 and can then adjust up and down depending on what works best for their anatomy, dexterity and type of catheter.

      The next important thing is that if you have an enlarged prostate you want a catheter with a "coude" tip. A coude tip is a curved tip which makes it easier to navigate the catheter around the prostate without getting it snagged. This is important. So, in that case you would order a FR14 with Coude Tip. Not all brands have coude tips but many do. Of course if you don't have an enlarged prostate then you just get a straight catheter.

      I'm not familiar with "Amici Plus" but am a little familiar with GentleCath, and it seems a popular model. GentleCath I believe does come with a coude tip.

      I've tried literally a dozen different catheters and the one that works best for me is Coloplasts Speedicath with Coude Tip. If you can afford a disposable catheter I highly recommend you start with this one.

      Speedicath is a single use, hydrophillic catheter with a very slippery (hydrophillic) coating so you do not need external lubricant.

      The downside is that you can only use the Speedicath catheter once, unlike for example the 'GentleCath' which you could probably re-use a single catheter for a week or even more.

      If you decide to go with the disposable Speedicath let me know and and I'll tell you more about it.

      The other thing I've mentioned before is you should consider asking your doctor for a prolactive dose of antibiotics in the beginning, especially if you're very sensitive to procedures like cystoscopy, etc. I am very sensitive, so it would have made sense for me. Some people have no problems at all from the beginning, but others, like myself, have "breaking in" issues. These types of issues can include some bleeding, urgency, and the feeling to urinate even though you've just catherized. All these things generally resolve after a couple of weeks, but you should know so as not to be freaked out.

      You should also know that most of the catheter manufacturers offer free samples to try. So, before ordering a batch, maybe try and few different ones.

      Let me know how things progress and if you have any questions.

      Jim

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    • Posted

      Hi Kevin, I use the Gentle Cath and have found them to be quite satisfactory. I use 14 French with good results. When I initially went to the Emergency Room with urinary retention, the Foley they put in was 18 French, like having a fire hose up your penis. When I finally got that out, I tried a 16 and found it still too big. 14 is pretty good. I've been told that 12 is too flexible and may be difficult to insert or might even kink in the urinary tract, however I have no first-hand knowledge of this, and I've seen posts here by guys who use a 12 successfully and like it. Best advice, try a Gentle Cath 14 FR and see how you like it then go from there.

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    • Posted

      Light1 said: "..14 is pretty good. I've been told that 12 is too flexible and may be difficult to insert or might even kink in the urinary tract.."

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

      Hi Light1,

      Not all FR12's have the same flexibility. For example, I could not use an FR12 red rubber catheter because it was too flexible. However, the hydrophillic Speedicath FR12 is stiff enough that I can use it. That said, it takes a little more finesse and practice than the FR14, but for many that comes fairly quickly. Because of the flexiblity, you have to go a little slower and gentler and have a better "feel" when you navigate around the prostate and through the bladder sphicter. That said, it now takes me only 5 seconds for the insertion, so I can't say it really slows things down very much smile 

      Rule of thumb is to use the smallest catheter size that will work. I agree best to start with FR14, but urge everyone to try the FR12 after awhile and be a little patient and give it some time, ie not to give up the first time it seems to bend. When it works smoothly, the size difference translates into less friction and therefore trauma which over the long term is a good thing. 

      Jim

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    • Posted

      I currently have a Foley 18 inserted. I did wear a 24 for a week after they irrigated many clots from my bladder two weeks after the Rezum procedure. After little success to pee the old fashioned way, they may start me on CIC in an effort to retrain my bladder. Is it normal to have clots in the bladder after Rezum?

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  • Posted

    Hi Jim;  Happy New Year to You and Your Family.  Self cathing still makes me squeemish.  Hope and pray I never have to go thru it.  I commend you for taking it head on and mastering it.  Down to road (hopefully years from now) I may explore the plasma button turp that CS123 had with extremely great results.  But until then I will just live with the "PAE" procedure I had back on Sept. 10th of this year and keep going forward. 
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    • Posted

      Happy New Year to you and your family as well, Chuck.

      I understand the "squeemish" part, really do. In fact, the first time I self-cathed I almost fainted in the doctor's office! I really had a terrible time with it for a couple of weeks, muttering to myself "I can't believe I'm doing this,  what's happening, etc." smile  But it wasn't funny then. What's strange is how much difference a few weeks and then a few months made. Now, it's really nothing at all with what would be considered a 100% resolution of my BPH, ableit with mechanical assist.

      So, for anyone squeemish about self-cathing, I really understand and have been there. Just want to say that if you can hang in there, all of that squeemishness will go away.

      Also would like to add that not everyone has a hard time of it in the beginning like I did. Boy, you should have seen the cath nurse's face when it looked like I was going to collapse on the floor smile

      -- Jim

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  • Posted

    @Derek76 (from Cialis thread)  "...I did not get retro from Green Light PVP in 2005. The team who did mine reckoned that less than 40% of their first 38 patients did. However with Thulium laser the surgeon said that I most probably would. Why is retro a problem to you? I very much doubt the impotence statement even after a TURP, it would take a total prostatectomy to do that..."

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

    It's good that your team only gets 40% retro, but in my present situation,  I would not take those odds as they are too high for me.  And as you mentioned, the Laser guy said you'd probably get retro, and my button turp guy said almost 100% I'd get retro. So the point is there's a signficant chance of retro with these types of procedures, with turp or button turp a significant probablity.

    The "impotence statement" was not mine. My understanding is that only a very small per cent of people become impotent from these procedures. My uro told me that he's never had a case of impotence from button turp in his practice, although cases have been reported.

    "Why is retro a problem for me" ? It's a relative thing I guess. If I had no other choices, then I'd have an operation and accept the retro. But with the self cathing, I've been able to get rid of my prostate symptons without the retro.

    So, would I rather have an operation, end up with retro, and possibly a good to excellent result (but not guaranteed) -- or, would I rather cath, have no retro, and have what I consider an excellent result. Well, at the moment, I am very comfortable with the latter choice. Time will tell.

    -- Jim

     

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  • Posted

    Thanks for sharing Jim, I'm going to check with my insurance to see what's covered. I'm sheduled to have another cystocopy next month, rrrgggg ,  don't like it at all,  what I remember it was quit painfull the last time and I didn't get much out of it.  ie. at the time my prostate was enlarged , but not enough to have turp done.

    I like the idea of doing CIC  .  I'm sure I'll have more questions for you as I reserch it further.  Thanks 

    Kevin

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    • Posted

      Kevin,

      If you get the Urologist's nurse to instruct you CIC is not scary, not like a cystoscopy don't worry. She just showed me what to do, and right in front of her standing up I inserted it really easily.

      Also don't bother with insurance, if you PM me I can give you the name of a wholesale place, the prices you pay are the same or lower than the insurance price. Unless of course you get them free under medicare etc.

      When they taught me it was using gentle cath size 14 with coude. After my FLA surgery I experimented with Jim's help, now I've using size 12 coloplast straight tips lubricated, they don't cost much more than gentlecath (like $1.50 vs just over $1) but you don't need to mess with gel so less chance of infections.

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  • Posted

    Hi Jim.

    The problem i have with your post is based on the fact that life and cancer dont stand still. Do you take what ever treatment is available to you there and then or wait for some thing better. that depends on your circumstances. a gleeson scale of 1/5 probably means you have time to consider the options when you get to 8+ different situation. Prostrate cancer is supposed to be slow growing but not so slow that you might just find your options have vanaished.

    I guess self catherisation is very much the same as injecting your self with iodone. couldnt do it. I have diabetes 2 which is easier to manage but the moral of this story is very simple.

    Bladder stones are created by urine retension in the bladder. Lytmthomeda is caused by the radiation treatment destroying the lymth glands and diabetes 2 is caused by the seriods so its good tpo look beyound these wonderful treatments.and the true side effects of whats going on.

    Unfdortunatly many people could not do what your doing and I wish you the very best.

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    • Posted

      @peter06554:  "...The problem i have with your post is based on the fact that life and cancer dont stand still.."

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      Hi Peter,

      I think you may be confusing two very different things. self-cathing (CIC) doesn't raise the risk of prostate cancer. It helps alleviate the symptons of BPH, including the urine retention issue you mentioned.

      Prostate cancer is screened and diagnosed by a doctor through DRE (digital rectal exams), PSA's, ultrasound and biospsy when warranted. The fact that you're self cathing does not mean that your doctor will stop monitoring you. .

      You say, "Unfortunately many people could not do what your doing..", and I somewhat disagree. It's a quickly learned skill that is not very difficult. Yes, initially there can be a "squeemish" factor to contend with -- there was for me -- but that soon disappears. (I had never been cathed before so I think that heightened my anxiety. If your doctor has cathed you before, like many here, I would imagine that self-cathing would not initally so intimidating.)

      That said, CIC isn't for everyone, and other treatments, procedures and operations may make better sense, especially in the long run.

      Wish you the best as well.

      Jim

       

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  • Posted

    Ron Texan from another thread said: "...It’amazing to me that infection is not a larger concern when self cathing especially using one several times. Using an antibiotic lubricant is helpful, I'm sure….permanent harm of sphincters, bladder, sexual function and even the kidneys can occur from delaying too long to have a surgical procedure done..."

    Derek 76 said: "...I often wonder about those who self-catheterize to defer surgery. Their prostates continue to grow and one day it will have to done. Another aspect is the 'if you don't use it you lose it' in that if the muscles and sphincters in the area are not being used will they work when surgery is ultimately done?.."

    . Ron and Derek,

    Self cathing actually decreases infection (uti's) , not increases it. The reason is that retention causes urine to go stale which is a breeding ground for bacteria. When you self-cath, you completely empty your bladder, therefore no retention, and less chance of uti. As to using the same catheter multiple times, there are proven methods of easy, at home disinfection that one can look up.

    As to prostate growth, that should not affect self catherization as I understand it. The SCI community (spinal chord injury), for example,  uses self-catherization as their preferred method of choice for a lifetime without issues. I would also argue that any time "lost" self catherizing could be time "gained" waiting for better treatments to come along.

    The issue of "lose it or use it" is a good one. I self-cath about 50% of the time, which means that the other 50% I am using my bladder/sphincter muscles just like anyone else. I think this is typical. But even if I cathed 100% of the time, you can still bear down on those same muscles to let's say "push" things along.

    As to the bladder, sexual function and  kidneys...self cathing gives positive results in all cases. The bladder is completely emptied meaning no back-pressure (reflux) on the kidneys resulting in hydronephrosis. In fact, the reason I started self cathing is because my ultrasound showed mild hydronephrosis in both kidneys due to years of retention. The hydronephrosis was resolved completely after just a few weeks of self cathing. Sexual function is not altered as there are no drugs or procedures involved, so no risk of retro ejaculation, impotence, etc.

    I don't want to come off sounding like self cathing is the holy grail or something, but I do want to try and clearly state what it is and isn't.

    It is a painless, five minute procedure performed usually 2-6 times a day that completely empties the bladder and therefore resolves all issues associated with retention, including frequency, urgency, leakage, and uti's. That said, unlike a successful procedure, you can't urinate on your own exclusively, you need to have catheters and supplies at home and when away from the home.

    -- Jim

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  • Posted

    So, there you have it folks, all you could ever need to know about self-cathetering. That's a great post Jim, lot's of readers will benefit from it. You recall that I learned how to do it as I was contemplating a wait of two months or more before I could have the Holep done. Turned out I found a surgeon who could do it sooner, plus the meds began working again so I didn't have to self-cath beyond learning how. 

    Knowing how to relieve yourself, if nothing else, beats the heck out of the emergency room.  

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    • Posted

      I think what helped me most in getting over the squeemish part of sticking a 16" tube up my urethra was that I had just gone thru a cystoscopy and the instrument he inserted and turned all around to show observers the interior of my bladder and prostate was far in excess of a little rubber tube, and of course the motivation of knowing that learning this may save a lot of embarrassment and pain.

      I suppose someday my prostate may grow back and if so there will be self-cathing as an option. Of course by then they will have tiny remotely controlled micro bots to go up there and munch around. 

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    • Posted

      @RonTexan: "..you recall that I learned how to do it as I was contemplating a wait of two months or more before I could have the Holep done..."

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

      If I remember correctly, you had a few difficulties, including bleeding.

      This is not at all uncommon for the first two weeks of self cathing. Unfotunately, many people who try it for various reasons do not get beyond the two week window and therefore come away with the thought that it's a useful but uncomfortable procedure, that they are glad to have in their arsenal but would never want to do long term.

      I was VERY uncomfortable for first 2-3 weeks, and if not for the fact that I was initially on a sixweek pre-operative selfathing program, my experience of self cathing would have been very negative, and I would never have recommended it to anyone.

      But like with any of the surgical procedures mentioned here, while post operative side effects are important, the final measure is where and how you end up after the recovery period.

      After the initial 2-3 week period, the difficulties I had started to subside, and within a short while it became easy and painless. Some people I read are a lot luckier and have it easy from the beginning.

      Jim

       

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    • Posted

      I didn't really have bleeding, just that the larger catheter wouldn't go and when I took it out it had a bit of blood on the end of it. I tried the smaller size and it worked just fine and I thus added another arrow to my quiver. 
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    • Posted

      Ron,

      when you say you went to a smaller size, did you start at 14 and goto a 12 ??   Also, did it take longer for the urine to leak out of the catheter as you went smaller ?? thanks (hope I'm not being to forward)

      Kevin

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    • Posted

      @RonTexan: I didn't really have bleeding, just that the larger catheter wouldn't go and when I took it out it had a bit of blood on the end of it. I tried the smaller size and it worked just fine and I thus added another arrow to my quiver. 

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

      Gotcha. Sometimes a smaller size works better, and sometimes a larger size works better. Depends a lot on not only your individual anatomy but also on the type of catheter, as some are more flexible than others. Normally that start people on size 14 which is known as 14FR or 14 French. I started with 14FR using a red rubber catheter, but then went down to 12FR when I switched to a stiffer Hydrophillic Catheter. Rule of thumb is use the smallest catheter size that you can get in easily. When they are too small you will know because instead of going in all the way they will start bending.

      Jim

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    • Posted

      I believe you are right about the sizes, it's not a leak, mine flowed really well, emptying in just 15 seconds or so. i wouldn't worry about that. I definitely would use the smallest and stay with it if it works for you. It will be easier on your plumbing. If it bends, then it's too small, tho. Good Luck!l 
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    • Posted

      Hi ZD,

      Yes indeed! It goes back to a 19th Century French surgical manufacturer. The FR (French) number is 3x the diameter in mm. So a 14 FR would have a diameter of 4.67 mm. 

      A good starting size is 14 FR. From there you can go up and down depending on how it goes. Some folks with very large or swollen prostates might have difficulty getting by the prostate with the 14 so they would go up to 16. Sounds counterintuitive but think of the 16 as a bigger drill! Others, like myself, dropped down to FR12 as the rule of thumb is to use the smallest size that works. 

      The type of catheter also effects the size choice. For example I could probably not feed a 12FR red rubber catheter by my prostate because the red rubbers are like soft noodles! So there I would need a 14. On the other hand my FR12 Hydrophillic works just fine because it is stiffer. 

      The catheter many of us like here, including myself, is Coloplast's Speedicath. I use their Speedicath with the Coude (bent) tip which is designed to go around large prostates. Since you have had a TURP you might be able to get away with their straight model. Here in the states real easy to get free samples which helps finding the catheter that works best for you.

      All the best luck with the self cathing. Some find it very easy right from the beginning, for me it was quite difficult out of the gate, but with time as easy and time consuming as brushing my teeth.

      It's sometimes hard to navigate through these -- for some reason non-chronlogically organized -- long threads for info so please feel free to ask any questions you might have regarding technique, either here or via PM.

      Jim

       

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    • Posted

      ...ha, ha, ha!!!  In college, my roomate was from France.  Not a tall guy, but I remember one day we both were using the urinal, that were situated next to each other.  I kind of glanced down at my urinal, and with my peripheral vision, I had a glimpse of his penis, and I couldn't believe the size of his tool!  It was huge! Not 14 inches, but at least 8 or 9, limp. A little guy, with a whopper!

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    • Posted

      Not email. PM = Private Message. Just click on person's and then "message". Useful to send web links, etc. that get blocked or delayed on public forum.

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