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

Maybe you needed more implants.  I had 4 put in my worked find.  Some men need more.  Chuck P had 4 the first time and it did not work they put 4 more in and it worked  great  Take care  Ken

Hi Frank,

While not perfect, the IPSS (International Prostate Sympton Score) is a fast and simple attempt to quantify the severity of BPH both for patient and physician. You can find a link to the questionaire in the first post of this thread here. It only takes a couple of minutes to compute your score:

https://patient.info/forums/discuss/what-is-your-international-prostate-sympton-score--453484

I originally started self cathing at the suggestion of my doctor for the purpose of rehabilitating my bladder enough for a successful TURP. However, after researching TURP, I decided to pass on the operation and continue self cathing instead. I was told that if I persued this route I would never be able to void properly without a catheter. Turned out the doctors were wrong. 

Over a period of several years my bladder regained more and more elasticity and today I only have to self cath on occasion. My IPSS score just prior to self cathing was 30-35 (severe) today it's generally between 5-9 (mild), which is probably at least as good, or even better outcome than if I had an operation. 

This doesn't mean self cathing will rehabilitate everyone's bladder to the extent it did mine, but I'm sure my bladder is not unique so it might be worth a try. And even if self cathing doesn't rehabilitate the bladder, it's still a reasonable alternative to surgery as it will empty the bladder completely thereby preventing retention and protecting the kidneys.

When you speak to your doctor be prepared to hear the common medical wisdom which is that an elastic (flaccid) bladder can only be rehabilitated to a very limited extent.  Again, my experience has been different.

Jim

Jim,Thanks once again. You have given me more info than my Uro.

I am going to get these tests,idon't know what to doas of now,so i will keep on self cath. I do get a pain with i witdraw the catheter  very slowly,using fr 12. Would you send me the link how to self cath?

Thanks Jim,

Hi Frank,

Here's the technique I use to self cath. I call it the "no touch" or "nose dive" technique because my hands never touch the catheter itself.  It works well with a fairly rigid catheter like Speedicath but would not work with a very flexible red rubber catheter that you would have to feed in by hand. This is my personal method but many variations, so feel free to experiment and modify.  You can also check YouTube and other places for videos usually by the catheter manufacturer. If you have difficulty with the "no touch" technique, there are other ways to do it where you do touch the catheter itself. In this case I would recommend using non-powdered surgical gloves but a good handwashing should suffice. Whatever technique you use, be very gentle and never force anything.

I do it standing up over the toilet, but it can be done sitting or even lying in bed. Use your own judgement on how often to wash hands during the process. If I were at a public toilet, I'd probably err on the side of more washing. If at home, I sometimes skip some of the washing steps.

Wash hands with soap and water and/or alcohol based hand cleaner. Stand over the toilet and urinate naturally if I can. Quickly wash hands again. I then clean the head of my penis and meatus (hold meatus open with thumb and forefinger pressure on penis head)  with either a BZK wipe or an anti bacterial spray such as Vetericyn VF. Remove Speedicath from packaging with dominant hand only touching the plastic funnel, making sure that the catheter itself does not touch my body or any object. If it does, discard catheter and start over. Still holding the catheter by the funnel with dominant hand I gently pull penis upward with other hand until straight. The head of penis is now facing the ceiling. I open the meatus a little by exerting pressure on side of penis head with thumb and forefinger of non-dominant hand. With meatus open, I then slowly drop in (nose dive) the catheter into the open meatus without exerting any downward pressure. IMPORTANT: Because I use a Coude Tip I make sure the tip is curling toward me and up, with the plastic guide on the funnel facing my belly.  The catheter catches about ¼’ inch into the meatus. (If for some reason I miss the meatus and catheter falls off penis and touches anything, I discard catheter and start over.) Now, while still keeping the penis straight and extended upward I slowly push down on the funnel with my dominant hand until I feel the first point of resistance, the prostate. (As I push down, while still holding penis straight, I gradually change angle so by the time I reach the prostate the head of the penis is now facing he wall opposite me.)  Continue pushing until catheter passes through urethral sphincter and urine starts to flow. At that point, or actually slightly in anticipation of flowing urine, I aim the funnel toward the toilet bowl to catch the urine. When urine starts to flow I push catheter in maybe another inch. When urine stops flowing I back out the catheter slowly to drain out any urine on the bottom of the bladder. Now, holding my forefinger of my dominant hand  over the tip of the funnel, with my penis still extended by my non-dominant hand, I slowly pull the catheter out while gradually changing the angle so that the head of my penis is facing the wall opposite me. When the catheter comes out, I hold it over the toilet and release my forefinger from the funnel thereby expelling any urine in the catheter. I again wash hands and meatus and dispose of catheter.

While this may sound complicated and time consuming in writing, after practice the cathing process (including draining the bladder) takes me just under a minute and the actual insertion process around 5 seconds.  Of course I've done it well over 1000 times by now!

Jim

As an addendum to the above, there are a few techniques people use when they encounter resistance at the prostate and/or urethral sphincter. So if you encounter resistance, instead of forcing things just stop for a second and try and relax while exerting moderate pressure on the catheter. Some call this "knocking on the door". Often the door will just open and let you in If not, you can back up a half inch or so and repeat process. If not, I sometimes will gently twist the catheter back and forth several time (no more than a quarter turn each way) and while twisting exert pressure. Sort of like a gentle drill I find this works pretty well.

If none of the techniques work, and you can't get by the sphincter, the general guideline is to go up a size in catheter as a larger diameter catheter has more mass, is stiffer, and therefore can push through easier. And while this works, my own personal opinion is to also try a smaller size catheter which just might work because less to push through. 

Jim

Thanks Jim,for all this great info. The nurse at my urologist office never explained this. All she said wasy besure to wash your hands before ,and it's ok to touch and bend the speddi cath.I''m grateful for your info.

You said you were in retention at one time,did you take medicine;Avordart and flomax ?I am still in acute retention.I asked my Uro nurse if doing CIC could rehabilitate my bladder.she said all CIC does is empty your bladder,the same as a foley catheter. I have hope and believe what you said,your bladder has been rehabilitated drom using CIC. Maybe i should look for another URO.

thanks for your reply.

Hi Jim,

I just did my 4th self-cath in as many days and need your help on a problem. I follow your technique religously and it works really great. I encourage everyone new at this to visualize your technique while lying in bed so it becomes automatic.

But just now I had a bit of a scare. First I peed out 250 ml on my own. Then as before when the catheter is in about 10 inches first I get some pinkish blood followed immediately by normal colored urine. I then pushed the catheter in about another inch and I was shocked that the yellow pee turned to deep red blood. So at that point I slowly pulled out the catheter and a few red blood drops came out of the penis tip.

My cathed volume was 200ml so the total void was 450ml.

What caused that second blood flow? I am worried about it as the three previous caths over the past 3 days did not have that. Did I do something wrong? There was no pain or pressure associated with it.

Thanks Jim.

Neil

Your nurse is incorrect. CIC has been shown to rehabilitate bladders short term and that is why self cathing is often suggested for 6 week or so prior to a surgery like TURP. Studies show better results with CIC prior to the operation than if no CIC. That said, it is hardly ever recommended longer term because doctors don't believe their is much benefit after a couple of months. In other words they really don't think CIC will rehabilitate a bladder to the extent that the bladder can function normally without an operation. I also disagree with this train of thought because of the long term success I had with CIC. So you can look for another URO but don't expect to find one who will tell you that CIC will rehab your bladder to the extent that one day you will be able to stop. The best you probably can do is find a doctor who will support your choice to CIC instead of an operation. 

I've never tried Avodart and glad I haven't after reading here about some of the side effects. I have tried both Flomax and Daily Cialis. I preferred daily Cialis because no negative sexual side effects. Currently don't need either drug to facillitate urination so not using them. 

If you're going to self cath I personally wouldn't do Avodart and would only do Flomax or Daily Cialis if I felt the side effects of the drugs warranted the benefits they might give. So these drugs now become options rather than required, because CIC will protect both your bladder and kidneys because it will empty your bladder completely every time.

Jim

Based on your posts the other day, sounds like the few red drops that came out of your penis are residual from the blood that was apparently caused when you went through the bladder sphincter and then pulled up with the catheter. Other than that, I can only guess that the cause is some type of temporary trauma, possibly because you haven't been cathing for awhile. Would definitely speak to your doctor about it if it continues on a regular basis. I know I told you best to use a Coude tip, but our anatomies are all different and it's possible you might have less bleeding with a straight trip. Worth a try, just be very gentle and if you do hit resistance, and feel a twinge of pain, rather than force it, remove the catheter and go back to the Coude. That said, I think I would give the Coudes a little more time and see if things get better.

I'm assuming that your Coude is lined up properly. In a standing position, the guide bump on the plastic funnel should be facing your belly as the tip of the catheter enters the stretched penis head which would be facing the ceiling.

Jim

Thanks Jim. I find it quite easy with the coude tip. I am very careful to keep it oriented properly. The only discomfort I feel now is when I am knocking at the door of the bladder sphincter. Then I feel a twinge like a sharp pinch. I just keep light pressure at that point and then after a short while I can feel the tip move through into the bladder.

This time I did push further about an inch once inside after the drianing was complete. This was the wrong thing to do as I should moved out and not infurther. Do you think I hit the opposite wall of the bladder by doing that and caused the second bleeding - since at that point the bladder would be pretty much closed.

I do have some papers that show that atonic bladders can be rehabed once the outlet obstruction is removed. These papers refer to surgical procedures but it seems to me that CIC accomplished the same thing as you have personally shown.

Thanks again.

Neil

Yes, standard procedure is to push it in about an inch from the point the urine starts to flow. Once it stops you should back up slowly to drain from the bottom because remember you're entering from the bottom of the bladder and the catheter is sticking up an inch.

Are you saying that you pushed in another inch? That would make two inches into the bladder? If so, not necessary but I don't think much harm would be done as I've done similar myself trying to find the entrance to my bladder diverticulum which is an altogether another story. 

From a purely technical viewpoint I don't think it's necessary to even push it in an inch after urine starts to flow but I'm guessing the reason they want you to do such is to make sure you're actually 100% inside and/or the catheter doesn't get pushed out by the sphincter muscle. 

Other than animal experiments and a few isolated cases, I haven't found much about internally reconstructing a atonic bladder. Could you either post or PM me a link to any info if you have it. Thanks.

Jim

 

As to the discomfort entering the bladder, a little tinge can be normal especially if you haven't been doing it for awhile. You can experiment with the twisting thing I described earlier or even try a little cough that might momentarily loosen things up. What I used to do is visualize the sphincter and tell it to relax, sort of like how they teach you to relax muscles in Yoga training. I used to do this visualization and auto suggestion quite frequently in the beginning but now the entire procedure is automatic as the process has become very natural.

Jim

Hi, Neil,

Sorry to hear you've been having some trouble CICing lately. Hang in there. You'll get through this. After my PAE, they put a Foley in for 7 days to give my urethra a rest--at the time I also had a nasty UTI. When they removed the Foley, I felt like I was starting over with CIC.

There were times I took an hour, 4 attempts and 4 catheters to complete a CIC. Sometimes I would see blood, too, but usually mine came at the end of a cathing. Eventually, it got easier. My actual CIC time now is about 2 minutes--still have a way to go to catch up with Jimjames's 4 seconds!

In my CIC research I read that you should push in about an 1" after you drain so that the drain openings can get out the last drops of urine. I don't think you need to do that. In doesn't work in my case because my median lobe creates a volcanic cone in the base of my bladder, so there's no way I can completely drain it.

When I CIC I rarely feel the bladder sphincter anymore. I do, however, meet with resistance when I reach the prostate. That's when I use relaxation techiques, or I very gently move the catheter up and down or side to side to get past. I find my body tenses when I'm about to hit that resistance--for example, I often find I'm tensing my buttocks so I have to make myself relax.

I'd like to see your papers that show atonic bladders being rehabed once the obstruction is removed. You can PM me with the info on them if you want. One urologist suggested putting in a pacemaker device to help with mine. I declined that because I reasoned that my bladder is getting the nerve signals--it's just that the muscles don't have enough umph to push very well right now.

Stebrunner

 

Hi Neil, when I reach the sphincter muscle I feel a pinch or twinge too. I then stop and keep gentle pressure against it until it fatigues and relaxes. I too push the catheter in about another 1/2 to 1 inch after passing the sphincter, though I think a quater inch might be plenty just to get the catheter holes inside the bladder. 

I plan to ask my urologist about the state of the inside of the bladder when empty. Does it close shut or is there still a cavity inside? I wondered that when I inserted a catheter to check for retention after emptying the bladder normally.

Hi, Jim,

I met with my local uro this past week to discuss removing my urinary stones. He seemed very surprised at my progress with my PAE, and he seemed very surprised that I'm CICing so well (thanks to you!). I honestly think he thought my CICing and PAE would fail--and cause me to come back and ask for a TURP. Yeah, when pigs fly! LOL!

His staff ran a urine culture. They said I was colonized, and they seemed surprised that I didn't have a UTI.

My actual CIC time is about 2 minutes now. I rarely feel the bladder sphincter, but I frequently meet a lot of resistance when I hit the prostate. I alternate catheters between the Lofric Orgio FR14 and Speedicath FR12. I inspect the catheter tips before I insert, yet some catheters will feel scratchy from the start. Then when I hit the prostate resistance with them, I feel a painful sharp pinch. At that point I pull out and try a new catheter. Often the new catheter goes in without a hitch. Does this happen to you? Is quality control lacking with catheter manufacturers?

In your vast research, have you come across informaion on BPH and diet? I think there are times my prostate and/or urethra are inflamed due to something I've eaten, and I'm starting to wonder if that's affecting my CIC at times. In addition to my CIC log, I'm keeping a food journal to see if I see any connection.

Now that my insurance situation is settled, I'm putting off the stone removal until later this winter or next spring. In the meantime I will start using an herb called Chanca Piedra, which is supposed to reduce stones. My median lobe is pressing into the base of my bladder and creating a volcanic cone. In a way it's a blessing in that I won't be painfully passing stones. OTH, it means I can't completely drain my bladder. I figure I can keep UTI's down by drinking lots of water, etc.

Stebrunner

Hi Stebrunner,

2 minutes, wow! You've really come a long way, congratulations!

Colonization is normal and most people who have been self cathing do get colonized after awhile. It's not the same as a UTI and should not be treated with antibiotics. Some docs don't understand it. Every time I've gone to a Doc-in-the-Box to leave a urine sample they always give me an Rx for antibiotics to take home based on the urinalysis alone. I've given up trying to educate them, so I just politely take the Rx and thank them. Most of the urologists I've seen do understand this (some more than others) and they tend not to treat unless I have symptons regardless of urinalysis or culture. 

I don't inspect the catheter tip but not a bad idea. I've never had a problem with the thousands of Speedicath's I've used and that is why I use them! I have however had that exact same "sharp pinch" you talk about with other Coude catheters during the time when I was testing pretty much every catheter on the market.

I definitely tried the Lofric Origa and since I didn't continue using it, I'm pretty sure it was one of the ones that pinched me. Maybe not the first time I used it but one of the Origa's did. Not sure if it was the shape of the Origa Coude, or quality control as you suggest or just the fact I'm very sensitive down there. But one sharp pinch from a catheter and that's pretty much for me. I'm outta there!

The fact that only the Speedicath works 100% of the time frankly makes me a little nervous should they ever change their design. I hope they never do!

I'm sure there's a connection between BPH and diet or at least in managing symptons. Some diets are more diuretic than others -- high protein for example-- and then there's fluid intake, salt intake, spicy foods, caffeine, alcohol, etc. There are so many variables but a food log could prove helpful nonetheless. Also exercise, sleep, napping, etc. All seem to effect the prostate and bladder in different ways. Lately, I've been having some beers in the evening and noticed I'm getting up at least once or twice a night as opposed to either just once or not at all. I'm still going to have that beer if I want it, however, as I've gotten used to getting up at night over the years so another time isn't that big a deal.

When you say you can't completely empty your bladder, you're talking about naturally emptying it I assume? With self cathing you should be able to empty it completely, pressing median lobe or not. I also have a pressing median lobe and can now empty my bladder completely without self cathing, so I would take the doctor's admonition that you will never be able to empty your bladder without another operation with a grain of salt. Hey, I was told that too!

Good luck with the stones but as some of here have suggested, don't have it removed by any doctor who tells you that they may have to do a TURP if something goes wrong. Even if it's a 1% chance don't do it as there are other ways to remove stones that don't go near the prostate. 

Yes, drinking water can help reduce UTI's but you have to balance it against going to the bathroom too much. 6-8 glasses of fluid seems to be around right and that would include not just water but juice, coffee, tea, soda, beer, etc. That said, if you feel a UTI coming on, or if the bladder just feels irritated, nothing wrong with upping the water intake for a day or so and flushing things out.  

Jim

 

Hi John,

The bladder sphincter close shut so urine will not drip out but I'm pretty sure the bladder holds a minimal sized shape with an empty cavity inside. If not, probably would be difficult for urine to enter it from the ureters. Let me know if your doc says anything different. 

But back to the sphincter -- because I have a diverticulum there was a time when I would either leave the catheter in longer to let it drain. I do remember a couple of times I forgot to do this and remembered as I was pulling the catheter out. So I pushed it right back in but could not get by the sphicter the second time. Apparently, because the bladder had emptied completely it shut like a clam shell!  I don't plan on doing any more experimenting here but if you ever run into extra sphincter resistance one of the reasons could be that your bladder is completely empty. Which is good

Jim

Hi Jim, Steb, and John,

Thanks so much for all your feedback to help me back up the learning curve of CIC.

Here is a paper that talks about reversing bladder hypertrophy and muscling once the obstruction is removed:

"Reversible change of bladder hypertrophy due to benign prostatic hyperplasia  after surgical relief of obstruction", Kojima, M. et al. 1997. J. Urol. 158:89-93.

I have more references that use animals (mostly pigs because their bladders are just like ours) to show the same effect.

But just because the bladder tone is restored does not always mean that its full ability to contract when voiding can be restored because the mitochondria in the detrusor smooth muscle cells may have been destroyed by oxidative stress. The mitochondria is where the energy is produced in the cell to drive muscle contraction.

That might be my problem because now it seems from my MRI that the blood flow to parts of my transitional zone has been stopped which should reduce the BPH. Also the size has been reduced from 280 to 175gm. But I have not seen any improvement in my IPSS score (30).

Jim - you have saved many lives including mine. Even if you just took this thread and copied it into a Kindle book you could help thousands of men who may think that drugs and surgery are their only options.

Thanks again everyone. I will try again tomorrow.

Neil

Hey Jim..  Don't know if this is going to help but saw this on Health Line.  It said Sesame Seed are good for the prostate because of the Zinc.  Pumpkin seed and conola oil.  Also they say that Vitamin C from vegetables are good for lowering the risk of a enlarged prostate.  Also lycopene slows the progression of BPH and it is connected to help prostate inflamation.  Did not see anything on the urethra but they had some good information on that site.  Vitamin D also helps   Take care buddy  Ken

If anyone wants that paper and can't get it please PM me with your email address and I will send a copy to you. Thanks. Neil

Thanks Neil, I found the study online. Very interesting. I actually was curious after my last ultrasound if my bladder had changed from before I self cathed but the report was unclear. One point is that the study group had lower starting IPSS scores than most of us here. Another is that it's hard to say how much of the improvement was due to bladder changes versus removing the obstruction through surgery. It's too bad not too much follow up in this area but then again, the newer procedures have a lot more money behind them in terms of studies and promotion.

Jim

Hi Jim, What type of surgery did you have? I am thinking about surgery ,and am still confused.

Thanks for your info.

Hi Jim,

It would be interesting to know how your bladder mass changed over the years you have been self-cathing. How would you say your PVR and IPSS scores improved during the 2 years you have been self-cathing? Did they decrease to today's normal values in a linear fashion or did they remain high for a long time and then suddenly start to decrease?

I think the improvements seen in the scores and the bladder mass reductions seem to go hand in hand during the first month and subsequent months. But it was interesting that two of three men who had initial bladder masses > 80gms had their AUA scores return to normal even though their bladder masses did not return to normal and still stayed high.

I think a lot of the recovery depends if fibrosis has developed in the detrusor muscle. While the hypertrophy may be reversible ( like atrophy in a way), maybe the fibrosis is not reversible so the recovery is only partial.

Still the way to go is CIC and not surgery.

Thanks

Neil

 

Hi Neil,

I thought the sub group of bladder mass>80gms did not fare so well, and this would be an important distinction,  but I cannot seem to find a link to the full-text tonight even though I had it last night, so please PM the full text link to me. Thanks.

I would like to give the study more thought but overall it's encouraging and seems to suggest that at least within this small sample, bladders can be rehabilitated after the obstruction is removed and therefore the damage is not permanent. If so, not too much of a leap to theorize that bladders can be rehabilitated through other means such as self cathing, not that I need that logic personally as I have my own experience! Interesting, however, that urologists not only don't make this leap but in fact tell us that self cathing well never rehab the bladder to the extent that it will function normally. 

My PVR was probably in the 300-400 range for several years prior to self cathing with an IPSS score in the moderate/severe category for that same period of time. Six months prior to self cathing I probably had even a higher PVR and my IPSS score was over 30. Today, my PVR is between 30-150 most of the time and when it's at the upper range it will usually drop right down to the lower range on my next void. IPSS is between 5-9 (mild). Progress wasn't exactly linear in that there were periods where I went off the catheter only to have to come back. But I think it was somewhere after two years that I realized I was able to go for long periods of time without the catheter and still have a normal PVR. 

Jim 

 

Hi Frank,

I haven't had any surgery. Instead of surgery I went on a self catherization program and after a couple of years my bladder started functioning fairly normally so that today I only need to cath every once in awhile. This doesn't mean everyone will have the same result but if it worked for me I'm sure it will work for at least some others. In any event, even if you have to self cath for life, after awhile it really gets pretty routine and can become a non event in one's life enabling one to empty their bladder completely any time they want and therefore significantly improving quality of life while protecting both bladder and kidneys.

Jim

Hi Jim,

Thanks for your answer. The > 80gm bladder weight guys did show an improvement in their bladder weight reduction over 12 weeks but it didn't return to normal the way the guys with an initial bladder weight < 80gms performed where the bladder weight reduced to 30 gm which is normal. But what was also interesting is that 2 of the 3 guys with initial bladder weight > 80gm showed really good improvement in their IPSS scores and were right in the pack with the <80gms IPSS score improvement.

So maybe this shows that IPSS scores are subjective. Or it could be that bladder weight improvement is not the whole story following removal of the obstruction. There could be neurological issues as well or other things.

As you say it would be a great study to do a controlled study of CIC with a lot of guys at different stages over a long time and monitor their clinical and other symptom changes over time. It would put a lot of uros out of work.

Can you PM with your email so I can send you the whole paper. There is also another paper you may like that I can send you as well: "The Detrusor Muscle: An Innocent Victim of Bladder Outlet Obstruction", V. Mirone et al. European Urology 51: 57-66 2007.

For the past 4 days my PVR is consistently 250ml following a 200 ml void. Should I increase the frequency from 2 times to 3 times/day?

Thanks as always.

Neil

If it's not too inconvenient I would. The less the bladder is holding the less it's stretching, the more it's resting and healing. You can even mix it up a bit cathing 4x/day for a few days and then go back to 2x/day for a couple of days. Even go up to 6x/day once in a while for a real bladder vacation! Then see how you feel. Sort of like hard/easy days at the gym! Don't be afraid to experiment within reason. A couple of months ago I felt a UTI coming on with some bladder irritation and I went from zero caths a day to 6/day for a couple of days in a row. I didn't really need to cath as my PVR's were within normal limits, but since I'm colonized anyway, no real downside but an upside in that I'm not only giving my bladder a rest but I'm also draining it 100% multiple times a day. I'll get back to you on the study.'

Jim

Just want to add that during the rehab process it's natural to want to see how few times a day you can cath, I know I did for awhile. But then I wanted faster progress and decided I'd go back to more agressive cath schedules and see if that would give me a boost. That longer term view seemed to work for me.

Jim

Hi Jim,Thats great news.A bladder can start to function normally after self cath. Did you take Avordart,or finisteride to shrink your enlarged prostate?I was told  ,you would get a fever if you get UTI ?Are their any other symtoms?

Thankd  JIm,

 

Hi Jim, How can i do a IPSS score? I.m in retention ,can't urinate at all. The questions  are for someone who can urinate. Any ideas on how i can do this  test?

Thanks.

Hi Frank,

It did with me but no guarantee it will with everyone.  It did take well over a year, however, before the bladder was able to function fairly normally on its own.

Jim

Hi Frank,

That's a good question regarding IPSS score! You can take it but it probably wasn't really designed for people self cathing. When I say my IPSS score today is between 5-9 (mild) I'm talking about during periods when I'm not self cathing. My score was also mild when I was self cathing but that was not because of bladder rehabilitation, it was because the catheter does such a great job of emptying the bladder! 

Jim 

 

Hi Jim,Thanks for that info.Jim did you have an enlarged prostate?Was it determined by a cystoscopy.Your giving me hope which is great,that even though i do have BPH-and still have rentention,perhaps self cath might get through the prostate to correct this?

Thanks for this info?

Hi Jim,

How long after you started self-cathing did you first see a reduction in your PVR? Thanks.

Neil

In 2008 my prostate size was 30g and 57g per transrectal and regular ultrasound. In 2013, prior to CIC, it was 89cc via grayscale ultrasound. In 2015, 60g and 63g, I think one was CT scan and one MRI, not sure. I was told last year after a cystoscopy that I had an enlarged median lobe (he didn't give me a measurement as I requested prior) but the fellow spent less time in there than I do self cathing (it takes me 30 seconds!), then hedisappeared before I could ask him anything -- so I really wonder if he actually noted the median lobe or was just giving me something off the top of his head when I asked him about it at my next appointment! Keep in mind that prostate size is only one factor as some men have large prostates with minimal bph symptons while others have smaller prostates with significant bph symptons.

Jim

Hi JIm,Thanks again for this info. I was told by my Uro that Avordart could shrink my prostate . It starts to work after 6 months. I guess i'm not the lucky one it's 6 months Nov 30Th.I started self cath Oct 24,  

I'm

 going to see another Uro Dec 13. I will let you know what he says.

Thanks again Jim,

Hi Jim, I'm still learning how to self cath.You say push it in  about an inch from the point the urine starts to flow.When it stops, start to take it out slowly. Is this right?

Hi Jim,

That's a good point that I'll keep in mind. I plan to ask my urologist about the size of my prostate when I see him next month. But, as you point out, just learning that may not tell me very much with the symptoms not really depandant on the size of the prostate. I am curious though to find out if it actually is enlarged. No one has told me that yet.

John

John,

There can also be variance in estimated size due to how it's measured -- ultrasound, MRI, transrectal, CT scan, etc. So if you want to compare apples to apples, ideally have it measured the same way at the same radiology lab.

Jim

Avodart has it's own side effect profile. Never used it but some of the fellows here didn't like it. 

Hi Neil,

I don't have all my notes handy, but I believe several months before my PVR started to get better and over a year before I had periods of low PVR without cathing. Then maybe another year before I could go most of the time without self cathing. Progress was somewhat linear but not always.

Jim

Hi Jim,I just heard on TV their is a doctor in Northwestern Hospital  in Chicago urology that will be doing PAE . This is a procedure witout surgery?

I beleive . What is your opinion of this procedure?

Thanks,

Hi Frank,

PAE is short for Prostate Artery Embolism. It is a type of surgery less invasive than TURP for example. It is done by interventional radiologists, not by urologists so a urologist is unlikely to recommend it, or even know a lot about it. For that reason I am surprised that the doctor in Chicago is in the urology department, but maybe this is a new development. 

In any event, we have a long thread on it here that will give you lots of information. If you have the name of the doctor in Chicago you might want to post it for others to check out.

https://patient.info/forums/discuss/has-anyone-out-there-had-a-prostate-artery-embolization--301859

Jim

When it stops, pull back slowly while still inside the bladder because it might drain out a little more from the bottom. After the flow stops completely, then slowly pull it all the way out.

Jim

Hi Jim, This PAE is in clinical trial.at Northwestern Hospital Chicago ill Dr Riad Salem

It has not been FDA approved as of now. I don't know much about clincal trial,

however, i guess it has to go through several stages before it's get approved. My thoughts are, This is not a new procedure why isn't it FDA approved?

What are your thoughts on this? 

Thanks JIm,

 

Hi Frank,

I just checked out the doctor and his study. As I expected, he is an interventional radiologist, not a urologist. This is normal for the PAE procedure because urologists do not have the training required.

I don't know about FDA approval, but I do know that many here have had PAE but not sure if their insurance paid for it.  You might want to go to our PAE forum and ask questions. 

Jim

Let me just add that from what I've read, it's very important to choose the right doctor to perform the PAE. I've heard the name "Dr. Baglia" several times (he's overseas) as well as a doctor in North Carolina. Again, you should be able to get more information at the PAE forum.

Jim

 

CORRECTION: PAE stands for Prostate Artery Embolization, not "embolism" as stated in previous reply

CORRECTION: That is Dr. Bagla, not "Baglia"

Jim

Frank.  Listen to Jim he knows a lot.  Ken

Hi Jim,

I wanted to ask you about bleeding during cathing. I just did another one now. I imagine you standing next to me coaching me through the whole procedure. When I get to the prostate there is a lot of resistance and pain but mainatining gentle pressure I get through it. It feels like swallowing an oyster when the catheter finally slips through.

After a few more inches I feel the sting or pinch of the sphincter and at that point I just maintain gentle pressure until the door opens.

The first fluid out then is blood - but it quickly turns to normal pee color.

When the pee abruptly stops I put my finger over the top of the green funnel while I pull out the catheter slowly. Once it is out I am always worried to see the lower third of the catheter filled with red blood. I then release it into the toilet.

So is this normal? I've cathed about 10 times in the past 7 days so far and the same thing happens everytime. Was this your experience when starting?

Thanks and Happy Thanksgiving to everyone!

Neil

Hi Neil,

How long has it been again since you started self cathing?

And Happy Thanksgiving to you and everyone as well!

Jim

Also, I believe you are using Speedicath FR14, Coude tip? Have you tried any other sizes?

Jim

Thank You Jim.  I to what to say that we have had some problem over the last few years but Thursday is a day of thanksgiving.  Let's forget our problems and enjoy the day with family and friends.  Have a Happy Thankgiving one and all.  Ken

Hi Jim,Your right.This is a clinical  trial. I don't understand why this procedure is not FDA approved ?It's been done in other states.I'm sure their must be lots of risks involved.Do you know anyone on this forum thats been in a clinical trial?

thanks

Hi Frank,

It's not FDA approved yet because they are still waiting for more data from trials, such as the one you mentioned in Chicago. That said, there are a few doctors that are performing it outside of the trial setting, but because it isn't FDA approved medical insurance may not cover it. If you go over to the PAE forum there are a few doctors who are mentioned. Two names that come up frequently are a Dr. Bagla in Virginia and a Dr. Isaacson in North Carolina. They are both interventional radiologists and they are currently doing PAE, but again, it may not be paid by insurance since it's still not FDA approved.

Jim

Happy Thanksgiving to all!  We will see you on Friday, by the way, it's my birthday today...just made 68.  Can't believe, I'll be 70 in two years!  I am saying a prayer for everyone on this forum, that each and everyone of you will have improved prostate, and bladder functions from now on!!!  Much Aloha, from Kaneohe, Hawaii.

 

Hi Jim,

I started sel-cathing last July when I went into retention a month before my PAE. I didn't cath for 2 months after the PAE hoping it would kick in but it never did. So I resumed cathing about 6 weeks ago but then had a herpes outbreak and stopped for a couple of weeks. Now I have resumed it about twice a day for the past week. I use speedicath 14 coudes and really like them. They go in nicely and are easy to control. I just wonder if the bleeding is normal at this stage.

Also to Frank on why PAE has not been approved : I did look into that a lot last summer because I didn't want to shell out the 6 grand for it if it didn't work for me. Every year the Society of Interventional Radiologists (SIR) puts out position papers on what they think should be the measurable outcomes for a successful PAE procedure. But they cannot agree and still argue among themselves. So it seems they are a long way off from convincing the FDA they have a valid procedure. Even the trial studies that have been done do not show convincing evidence to understand how PAE works or does not work. Yes it cuts off blood flow to the prostate but there has been little follow up with patients (like myself) to understand the detailed mechanisms of the physiology. And there seems to be little desire on the part of IR doctors to understand these details. PAE has been around for over 10 years. As Jim says though there are excellent threads on this topic with tons of info so you can make your own decision.

Take care everyone - I'm going to stuff myself now with turkey!

Neil

Have a Happy Birthday and enjoy your family  Ken

Hi Neil,

When you first started self cathing 4 months ago back in July did you have any bleeding then? Was it similar? I had bleeding for the first couple of months and told that this was not uncommon. Considering you haven't been cathing all that long, wondering if the couple of weeks time off re-insulted the system again. 

I was wondering about this myself as I stopped completely for over a month last year and worried I would have to go through the "break in" period all over again but fortunately I didn't and the first cath after the break was totally uneventful.

I'm assuming that when you naturally urinate the urine is clear and not red or the color of ice tea? If so, then definitely cath related but whatever the cause I wouldn't worry too much at this point because even a single drop of blood can account for what you describe when you pull out the catheter. Of course mention it to your doc -- assuming they have some experience in self cathing (big assumption btw ) and hopefully it's just a temporary thing.

Jim

Hi Neil, Thanks for that wonderful info.Northwestern Hospital is doing a clinical trial PAE--free .I don't know much about free clinical trials.

I do  know some of the side effects don't sound to good. Are you happy with results PAE?

thanks again for this info .Happy Bird day. 

Hi Jim The PAE at Northwestern hospital clicical trial is free,no cost.

I did some research,some of the side effects don't sound to good. I don't know ,i think i'm getting used to self cath>

Hi Jim - thanks for responding - you are THE BEST!

When I first started CIC I was all over the place with different types and sizes of catheters - there was lots of bleeding and stress. I had terrible experiences with nurse cratchet who tried forcing a 16 up my urethra and other traumas. It wasn't until I really studied all your posts and practices on my own that things calmed down.

I do seem to have never had a self cath w/o some level of bleeding. But when I void before CIC and after a few hours following the CIC there is never even a hint of blood - jsut normal yellow. It is like flossing - I always seem to have a little bleeding.

But I really like the 14 coudes. Your dive bombing technique really solves so many problems in getting going. I do have a big resistance at the start of the prostate but never push and then again at the sphincter.

From what you say I guess it is ok and maybe it will eventually stop.

It is such a weird feeling the pee stops flowing - quite unlike a natural void. I can really feel the bladder close down abruptly.

Take care

Neil

Hi Frank,

I decided to self cath instead of having an invasive operation like TURP or even a less invasive procedure like PAE or Urolift. Three years after that decision I have no regrets. I had a difficult time with self cathing for the first few months but then it started to get easier and easier and now it's really as easy and painless as brushing my teeth. 

Frank, some people really don't like self cathing. They don't like the idea and they don't like and/or tolerate the actual procedure that well. Others, like myself find it a non-event in their life and prefer it to the surgical options out there today. 

You have to decide whether self cathing is something you can live with or not. How much does it effect the quality of your life? If it effects the quality of life significantly, then I would consider an operation or procedure. If sexual side effects such as retro ejaculation don't bother you, then there is TURP and Holep. If you don't want retro ejaculation, then you should consider something less invasive like PAE, Urolift or Rezum, although some report some smaller instance of retro with PAE and Rezum.

Meanwhile, no rush with the decision, as long as you are emptying your bladder completely with self cathing. 

Jim

Hi Frank - I was considered an ideal candidate for PAE because of my very large prostate and no median lobe. I had mine done at UNC. I have had no benefit from it regarding symptoms - my IPSS score is still about 30. I also did not like the doctor who performed (Isaacson) as he was aloof, dismissive and has shown no interest in following up on my case. Having said that there are threads here where guys write testimonials to him like he is a god - so it really depends. I think there is a disconnect between outcomes and basic understanding.

But if you are a good candidate for PAE then it might be worth a go for free. You need to understand how they will perform the procedure and how they will follow up afterwards. Being a part of study you may get more attention.

The procedure itself is a non-event. Apart from some discomfort in your abdomen for a few days (I never had that) you would never know you had it done. Doctor experience is important but then again there was a fellow who was the first patient in Western Australia and he had a great outcome.

The risks certainly are embolizing too close to essential body parts like the rectum, urethra and bladder so you need to discuss that with the IR. Also there is a never-talked risk of activating indolent prostate tumors. That may have happened in my case but since I did not have a pre-PAE MRI I cannot say for sure. On Dec. 7 I will have an MRI-targeted biopsy to see if the lesion is cancer - not what I want for Xmas! But if you are in a study they may MRI you before the PAE so that is important. If I were you I would at least look into the study in more detail and ask losy fo questions. And please check out all the excellent PAE threads on this forum as Jim suggests. Now for some serious football!

Neil

Hi Frank - I would just ditto what Jim said here. We have one big advantage that Jim did not have when he started to self-cath - WE HAVE JIM to guide us! I don't think I could have stuck with self-cath w/o his posts. Had I started earlier I don't think I would have done the PAE since every procedure has consequences, both know and unknown - no matter what the docs tell you. Now that I am mastering self-cath and can do it forever I pray I don't have PCa.

All the best.

Neil

Hi Neil,You are so right.Thank God for all Jim's help.Now Neil , i want to thank you for this info.You also are an inspiration,thanks you so much, I pray your MRI is OK.

'

Thanks Frank for your good wishes - we pray here too it is just a granuloma. It is so scary to think I will leave this thread for the PCa thread - when I would get down over my BPH I would read that thread and be grateful. Neil

Hi Jim - I wanted to ask you more about bleeding. Yesterday I guess I ate and drank too much and did not cath before bed. I tried holding it in until 6 am and then had to cath as I was almost in retention. I went very slowly and carefully but it was so difficult to get past the prostate. Eventually I did and I was really glad to see the pee come out a normal color. But then right at the end the pee turned to blood for a few seconds just before the end. It was dark red for maybe 2 tablespoon fulls. Also the cath total was 500 ml with no free void before. Since then I went for 4 hours w/o peeing but then had a normal one which was still fairly pink. And now an hour later I had another one which still seemed to indicate some blood. There was no pain peeing.

Does this sound ok to you? Also, if there is still some pink to my pee is it ok to cath again later tonight or should I wait for it to clear up first?

I wonder if I push up all the blood into the bladder while inserting the catheter and then it stays in the bottom of the trigone region all pooled up while I drain real pee and then comes out all at once at the finish?

Thanks as always.

Neil

Hi Jim, This info is the greatest. I  also use BZk wipes. I wash my hands,then use the wipes on the penis,then after self cath wash my hands dry them and use wipes on pennis again.Am i over doing the wipes?

Thanks  Jim,

Not really. I've done more and I've done less. The only thing I've found with the BZK wipes is sometimes they are dried out. Maybe the brand I was using. But if the don't come out of the package somewhat moist, I'd open another package. Providone Iodine swabsticks are alway wet an give great coverage (I used to get the three packs) but they are a real mess so I pretty much stopped using them. Currently, I just use the Vetericyn VF spray but I think any of the methods are good as long as you wipe (or spray) both penis head and meatus. With the wipes, best not to go over different spots with the same part of the wipe. In other words, if you wipe the meatus with the wipe, then using a diffferent part of the wipe to clean the penis head. Sometimes I'd end up using two.

Jim

Sounds somewhat consistent with what has been happening. I would continue to cath as usual and monitor the situation. If you don't stop bleeding in a couple of weeks and/or you start bleeding more, probably best to notify your doctor for guidance. Does your doctor have many cath patients? If not, their guidance in this regard is unfortunately sometimes more of a guess than anything else!

Jim

Hi Jim, What do you mean the meatus? 

thanks.

JIm i just looke up meatus,thats the opening of your penis?Do you wipe inside the meatus?and then outside the penis head? Just trying to do it right?

thanks,

Yes. Because it's the meatus that your cath will touch on the way in. But after wiping meatus, I also wipe the penis head a little for added safety. But don't obsess over it. Some cath nurses don't even think wiping the meatus or penis head is necessary because it's your own bacteria, although I think the extra step is prudent and only takes a few seconds.

Jim

Hi Jim - Do you shake your Speedicath in the package before taking it out to make sure the lubricant is spread evenlyover the catheter? I was wondering if my bleeding problem might be because I need a little more lubricant on it but then I realized I just pull it straight out of the package before using. So it drips some lubricant from the tip before I art to insert.

Thanks as awlays.

Neil

I usually hold the package vertically under my arm while I do the prep so the lubricant would naturally settle down to the tip, but shaking it a bit is probably a good idea. That said, I don't think it will make much of a difference in what you're experiencing. As I mentioned, some blood isn't all that uncommon with self cathing in the beginning. Stay on top of it but give it some time.

Jim

Neil,

So I did one of my periodic "reality check caths" and actually I did shake the package a little as I pulled it out of the container. Just didn't remember this step as the whole process has become so automatic to me. I still don't think that is your issue but I thought I'd report back. BTW 400ml natural void and around 30ml out of the cath. I passed the reality check!

Jim

400 natural void, and 30 out of the cath, outstanding!  I hope to have my bladder, in that kind of condition someday soon.  

Thanks Jim. I think it is getting better. Part of the learning curve is experimenting with varying the position of the catheter from vertical up at the start to near vertical down at the end when it is just an inch from the green end. Last night I was surprised when the catheter entered the bladder w/o any pinch at all! I actually missed the toilet as I was still waiting for the pinch. I think this was due to finding a good angle at that point. It is not my idea of fun but as an engineer I like experimenting with all the curves and angles and pressures.

Thanks again and all the best.

Neil

Hi Jim, I don't know what we all would do without your assistance.Thanks so much JIm. I don't know if this means my bladder is stretched out? My urine output througtout the night is around 650 ml to 850ml.

somtimes daytime is 400ml for just 1 time  cath. Also i get chills throught the day,no fever,do you think this could be an infection?

Thanks,JIm

I think what you will also find is that once it gets better then you will relax more and then even less pain and then none. It's very hard not to tighten up in the beginning especially when you're expecting pain. As to the angle, experimenting is good and the change of angle can be fluid even as opposed to step by step. I'm not even sure of what angle I use now it's just sort of automatic as if the body tells the hands how to feed the catheter through, all within just a few seconds.

Jim

Your bladder may indeed be stretched out and that's in part why you're self cathing. When you say your urine output at night is 650-850, is this one void or how many?

Your chills are probably nothing but I would report them to the doctor as they can precede a fever and the incidence of UTI's is higher when you self cath then when you don't.  If he doesn't suggest it, you might ask for a urinalysis to make sure no infection. 

Jim

Hi Jim, Voids vary from 650 ml to 850 ml, 2 voids , from 10 or 11 pm to 7am

I am going to see another URO Dec 13, i am curious to hear what he says about CIC?

Jim,

 

I would not wait until December 13th to have a urinalysis if you are having chills. Isn't there a "doc in box" near you? If you show up and say that your self cathing, have some pain and chills, etc., they will most definitely do a urinalysis for you and a culture if it's positive. If you go this route, make sure  you get a complete copy of all your test results they give you. Also, GP's tend to over or mis treat patients who self cath, so before you take any antibiotics they may hand you, run it by your urologist.

Are you saying you're having two voids at night, each around 375ml? Sounds normal considering your situation. As we get older, we tend to urinate more at night but there are some things we can do to reverse it somewhat such as limiting fluids after 6pm, afternoon naps, compression stockings, or experimenting with diuretics like caffeine/coffee in the afternoon. 

Jim

Frank.  Listen to Jim he will tell you the right way to do it.  And what he said is true once you get use to it .  It will get easier for you.  Ken

Thanks Jim. For my last 3 caths in the past 12 hours I no longer feel any pinch when I reach the inner sphincter. I now have to gauge I reached the bladder when I am 2 inches from the end. I don't even feel entering the bladder now. Is this good? I still have a tough time getting through the prostate though. Take care.  Neil

Hi Frank - there's a product I use to test my pee at home for leukocytes (irritation mainly) and nitrites (possible infection). You just dip the strip in your pee and wait 2 minutes. It is called a urinary tract infection test ( easy at home from amazon). I keep t handy as I too often get chills and cold hands and feet with no fever ( just stress I think). Good luck. It is getting easier. If I knew this back in July I would not do PAE - for sure!

Neil

I use Siemens 10G Multistix. Its the same one that a lot of urologists use.

Jim

Thans Jim - I'll upgrade to that.

So do you think it is ok that I don't feel the sphincter anymore? I worry maybe I desentisized something. Thanks. Neil

Hi Neil,Thanks for this info.I will buy these strips immediately. I just read  something on how to milk your prostate? This article said it could shrink the enlarged prostate? Have you heard about this? I don't know if i would attempt this,as it could be dangerous.I will ask Jim's opinion on this also?

Wouldn't it be nice if a simple procedure like this would work?

If their is i don't think a URO will tell us?\

Hi Jim, Is this Siemens 10G Multistix used to test UTI ?

Also I just read this if you milk your prostate it would shrink the enlarged prostate? I don't think i would try this,just wondering what your opinion was on this?

 

Hi Frank - I have heard about this method. I think it started in the Phillipines as a way to treat prostatitis. The idea is that there are millions of little fluid sacs in the prostate where the bacteria can hide, similar to the lungs air sacs. So it is very difficult to treat prostatitis with drugs, even if they are injected directly into the prostate because there are so many hiding places. Also the bacteria coat themselves with a mucous which makes it hard to get at them. So this doctor in the Phillipines developed a prostate massage method to try and squeeze out (or milk) all the fluid from the gland. I've heard of people who had it done over many months and years and say they had some success. It is done all over now at prostatitis clinics mostly. It is painful and expensive and I don't believe it.

There are theories that acute infections like prostatitis can turn into chronic infections if not treated right away which may then result in BPH by triggering an auto-immune response over time and uncontrolled inflammation of the prostate tissue which leads to BPH. I personally believe that and think I got my acute infection from an unnecessary and dirty needle biopsy for my prostate in 1996. But milking is very controversial and something of a black art. Take care. Neil

Frank, The strips are a preliminary screen. A positive result on leucocytes and/or nitrites might suggest a UTI but it would have to confirmed both by culture and your symptons. 

Doctors back in the day used to routinely do prostate massage. They don't seem to do it that much now but some might. I don't have a strong opinion one way of the other but I think we have lost some of the "hands on" (no pun intended) practice of medicine in favor of the quick surgical fix. So I guess I think it probably did have some value but again not as easy to find a doc still doing it.

Jim

Neil, I just think it means your body and mind have started to adjust. That's a good thing. Don't be surprised if sometimes you feel a little sting and sometimes you don't, because your tissues can be more tender sometimes and other times not so much.

As to reading the Multistix, they offer 10 tests but the ones most related to UTI are leucocytes, nitrites and blood. To simplify,  even if all three are positive, and even if your follow-up urine culture is positive, that doesn't mean you have to be treated with antibiotics. When we self cath, most of us are colonized which can present both positive leucocytes and/or nitrites. Colonization is somtimes called asymptomatic bacturia You only want to treat if your culture is positive AND you are asymptomatic. Most doctors don't understand this and even some urologists not familiar with self cathing don't understand this. The result is overtreatment with antibiotics which can result in antibiotic resistance over time. 

Jim

CORRECTION: Last paragraph near the end should read in part..

"....You only want to treat if your culture is positive AND you are symptomatic.."

Jim,  besides protecting the kidneys, I believe it will also prevent bladder stones from forming in the bladder.  I lhad bladder stones removed a few years ago, and I can't remember where I read that bladder stones are formed because of urine retention in the bladder.  Now that I can void my bladder completely, at least twice a day, it will be interesting to see if I still will have bladder stones forming in my bladder.

 

Hi Jimjames, your posts are a fantastic source of information! I here am an exemple of a very unsuccessful TURP with no good voiding and complete incontinence after the procedure. I would think twice before taking such a decision again. Best!

Thanks ZD,

Sorry about the TURP. Do you need to self cath to fully empty your bladder or to help with the incontinence? Have you tried condom catheters, sometimes called "stadium catheters". Some prefer them to the moisture pads.

Jim

Hi Neil, Thanks for that info. i Have been taken Avordart and flomax over 6 months now,hoping it would shrink my enlarged prostate and correct urine retention. It has not done a bit of good. Did you also take medicine for your prostate hoping like i did? I started cic around 6 weeks ago,and it sure is better than a foley catheter .

I am about to try condom catheters. I think I need self cath for both reasons:

during the day I have urges every 15-30 minutes and I certainly don't vois the bladder by the emission of a few drops...At night I am fully incontinent.

Logically, I don't understand why my flow never improved after TURP and yet I am incontinent at night...

I have used condom catheters out of despairation to give me some relief from being in wet pullups and pads 24 x 7.  Condom catheters are apparently not recommended for me, as I am not circumcised.  By being careful to push as much foreskin into the condom as possible before rolling the rest of it up, I have been able to make them work fairly well.  The challenge for me has been keeping the leg bag in place as it naturally wants to slip down as it fills with urine.  I've used the coloplast condoms that have an adhesive on the inside, and they've stayed in place well.  In removal, you have to be very careful to slowly unroll it from the upper edge.  I would get in the shower, and apply a warm wet wash cloth to the condom to help soften the adhesive.  Even so, sometimes it takes a few minutes to carefully remove it without damaging the skin.  (I assume a circumcised man will have less trouble.)

Even with the challenges, I've found they have been welcome relief from the constant wet diapers and pads.

Yesterday was the day for my surgery to implant the artificial sphincter; sadly, there was a problem that required aborting the surgery.  I was in the operating room, intubated and under anesthesia, and the doctor (who is excellent) started by doing a cystoscopy to make sure everything looks good on the inside of the urethrea.  It was blocked by a stricture and they couldn't even get a catheter in.  He did do a balloon dialation and inserted a Foley and send me first to recovery to wake up, and then home.   I am really distraught and disappointed, needless to say.

From what I've read, surgery for the stricture has the best long term outcome, and is better than dialation.  Have any of you had a strcture surgical repair?  I'll see the doctor (my new and competent doctor) on Tuesday, so i have to bear up with painful Foley until then.

Hi Frank,

I tried flomax about 10 years ago and it did nothing for me except make me dizzy. Then I switched to alfuzosin (uroxatral) as an alpha blocker and it really has helped me until this day with no side effects. I do recommend it to you.

Also 10 years ago I took Proscar (finasteride) and it ruined my life. Took away everything related to manhood! My uro insisted on it and never told me about the side effects - he said I was just aging! It did shrink my prostate for a few years and lowered my PSA but then after a few years it didn't work anymore. So my uro doubled down and gave me Avodart (dutasteride). It lowered my PSA for a few years again but over the past 5 years my prostate has doubled in size!! And its side effects are devastating. I've read terrible stories about getting off of it so now that I CIC ok I am trying to ween myself off it slowly and see if I can regain my manhood! But I do recommend alfuzosin to you - it works fast with good results and no side effects - at least for me. Good luck! The best though is CIC. Neil

ZD,

Hopefully self cathing will help. At a minimum, you will be able to rule out incomplete bladder emptying as a cause. As to no flow improvement, where is your doctor in all this? Maybe another doc should have a look.

Jim

 

Hi Jim and all,

Just wanted to tell you about a little experiment I did to see why I still have the feeling of a full bladder after CIC (sometimes). I did try your idea about cathing a second time right away after the first and did not get anymore pee.

So here is what I did: I took a regular 500ml plastic water bottle which looks like a bladder complete with trigone region when turned upside down. I then inserted one of my catheters into the cap up to the top of the trigone region if you can imagine that. I then sealed the little hole with glue to kae it airtight.

Next I filled the bottle completely and quicky turned it upside down holding my finger over the green funnel of the cath. Then I releases my finger.

It was quite interesting what happened. First water came out slowly under the weight of the water and the plastic bottle collpased on itself from the sides - just like a real bladder! For us with weakened bladder muscles it would be like the stored elastic energ in the bladder wall closing down as the bladder drains by CIC. It is not due to the detrusor muscle since cathing does not activate it.

But then the draining water stopped with the water level still a couple of inches above the top of the catheter. I waited a few seconds and then this burst of air bubbles went up through the catheter slits and more water driained out. Then again after a few seocnds the same thing happened in spurts until the all the water was gone. It was like the air bubbles you get when you take a drink from a water cooler.

So I think the pressure I feel in my bladder after CIC is due to air pressure and not pee!! This air will should get absorbed in the tissue and the new urine as the bladder fills which is why the feeling goes away after a while.

I redid the experiment but this time angled the catheter a little instead of keeping it verticle. Sure enough I could see a continuous flow of air up the catheter into the bottle while a continuous draining of water out occurred. So this avoided the fits and starts. I tried that this morning when cathing and also noticed a more steady flow of pee.

So what do you think? Air in the bladder from CIC could exert that pressure feeling right after CIC rather than pee!! Neil

So sorry about your aborted operation! As to the condom caths, I got them today, two kinds, one of them so sticky that it scared me (I am not circumcised either!) , the other exactly like condoms. I am still waiting for my bags. I don't intend to carry them around, just to sleep with them...

I am still looking for a GOOD doctor!!!

Hi Neil, I did use alfusozin ,it worked for a while,then switched to flomax,and Avordart,This med never did shrink my proatate.I have been taken this over 6 months.I'm seeing a new URO Dec 13 ,see what i can learn? CIC so far, seems the best,thanks to Jim, for all his great support.I don't know why i have to get up 3 times during the night.I have been cathing 6 x aday.

Daytime i can go for 6 hours without PVP.After 6or 7 pm i don't have any food or liquids,i dont' get it? Does bedtime make the kidneys work harder?

Frank,

When you get up at night 3 times, do you completely empty your bladder each time with self cathing?

If so, the problem isn't your bladder but a shift from daytime to night time urination. This is fairly normal as we get older.

If it really bothers you a lot, there are several strategies you can try, including day time naps, compression stockings, a low salt diet and certain drugs including diuretics. I personally have found that if I have a couple of cups of coffee in the afternoon it stimulates more urination before bedtime and therefore less urination during the night. That's because the caffeine in coffee is a diuretic. 

Jim

 

Neil,  what a great idea!  Thanks for sharing your experiment with the rest of us.

 

Hi Jim, Can i do a IPSS,since all i do is CIC. I have no natural voids?

frank,

You could but very difficult to answer the questions when you're self cathing without natural voids. Have you decided to increase your cath schedule and cath when you feel the urge instead of waiting 5 hours? I really think you should. Your nurse really has no basis for limiting you to 5x/day just don't tell it to her like that But in the end it's YOUR body, your prostate and your bladder. So make the best decision for you, not for them. If the docs and nurses had all the answers this place would be out of business!

Jim

Hi JIm, How do you know if you empty your bladder each time you cath?

thanks

Hi Frank,

That's an interesting question. They have used ultrasound to check the bladder emptying efficiency of catheters and have used catheters to check the accuracy of ultrasounds!!! 

That said, I would think in most cases that self cathing empties the bladder very efficiently. If you wanted confirmation, ask your uroloigst to do a bladder scan in the office right after you self cath. But it should be done within a minute or so before the kidneys have a chance to produce any more urine. 

Jim

Hi JIm,FIrst of all i want to wish you the very best  for a healthy New year ,God bless You. Jim i don't understand why one would have to CIC if you can do NV? My concern is if i have GL VIP and after this i would have CIC?

How can one know the answer  before Surgery? Or is this a gamble one has to take?

Thanks ,Frank,

Hi Frank,

A happy and healthy New Year to you as well!

Just because you have an NV, doesn't mean you are emptying your bladder completely. So for people with NVs who can't empty their bladder completly enough they do CIC. 

As you've read here, there are some that have had TURP or GL and still have to self cath, and then there are some that don't. Urodynamic testing with the right doctor should give you a better indication as to what group you will fall into although probably still a bit of a gamble. 

Jim

hi Jim,Thanks for that info. Any idea on how to know if you have the right doctor?

Thanks frank,