Self Catherization. An on “on/off” strategy.

Once you get past the internal sphincter (last point of resistance when you enter the bladder) the urine should start to flow immediately. Perhaps you're pushing it in too far or not far enough into the bladder? Do you have a diverticulum by any chance? What catheter do you use and what size FR is it?

Jim

Alex maybe I read your question wrong. Are you saying that it takes a few minutes for your urine to start to flow, or does it start flowing right away but takes a few minutes to get it out? I answered the former earlier, but if it's the latter, then that can be normal and dependent on the size catheter you are using. For example, an FR12 will flow slower than an FR14. That said, it is suggested you use the smallest size catheter that works but if the flow time is bothering you, no harm in trying to go up a size. What size are you using now?

Jim

Jim,

i got a notification that you replied to this. I don't come to the board as much but wanted to say hi and thanks for helping when my issue started a couple of years back.

Jim, glad you are back. Just wanted to say "hi"

Jim,

Thank you!

i was given red rubber urethral catheter 14 fr/ch 4.7mm

They told me i should reuse it because i would only get 4 per month.

i was told to do it 2 times per day.

do you reuse your cat?

I inserted it and the urine started flowing, but slowly, sometimes it drips and then starts again.

Sometimes it appears to stop, but then a weak stream id starting again.

Hi Jim - I just passed 4200 CICs thanks to you. I thank you every time I CIC and follow all your guidelines. Thank you for saving my prostate and a lot of misery. I now CIC faster than flossing as you promised! Please let us know how you are.

Howard

Alex, The catheter I use is single-use only because of its hydrophillic coating. That said, Medicare pays for up to 200 a month, so nothing out of pocket. It's perfectly OK to re-use a red rubber. That said, you might want to shop around for insurance to find a carrier who will pay for more than 4 a month. Hard to know from here why it drips and then starts. Is this at the end, or from the get go? If it's at the end, that could be because how the bladder empties and sometimes you have to pull it out a little near the end. You could also have a diverticulum. Ask your urologist. In fact what I'd do, is the next time you see your uro, bring your catheters. Have him do a scan before and after you cath to make sure you're emptying out all the way. If he doesn't have a decent scanner in his office, you can ask for a bladder/kidney ultrasound. Just make sure he specifies that you want to use a catheter after your natural void and you want any catheter residual -- if any -- measured. As to frequency, ideally you shouldn't be holding more than 400ml at any one time. So, if more than 400ml comes out on a regular basis, I would then increase the daily frequency.

Jim

Hi Howard, Changejobs and Dennis, Thanks for the nice words! Haven't been here much lately because of some health and family issues (atrial fibrillation and aflutter) but still check the emails from time to time.

Prostate wise, I'm still doing well. I cath a little more than before in part because my aflutter episodes can unload my kidneys very fast leaving too much volume for my detrussors to expel. That said, there are days I don't need to cath at all. And when I do a natural void, I still empty out very well with PVRs under 100 or even 50ml. Haven't had a UTI in over a year and my IPSS score is probably better than when I was 21. My best wishes to all of you and I will try to check in a little more often.

Jim

are hydrophillic coating the best ones to use? What insurance you have? I have Kaiser. IT's bad, but hard to afford a better insurance.

Thank you.

Howard, that is terrific news! It aligns with my own experience with the on/off strategy. At one point, I went I think three months or more without CIC. At that point in time, however, the strategy was only half baked -- it was more the "off" strategy lol and I did a lot of walking-it-off in the middle of the night, like yourself, to avoid having to cath.

But later, I realized, that it was not only ok to cath now and then, but beneficial. The "off " periods exercised my detrussors and then the "on" periods gave them a break as well as more complete bladder decompression.

We are all different, so everyone will have to find their own way, but when your nick heals, don't try and set any records for continuous days

off the cath, rather go with the flow (pun intended) as well as experiment.

And don't be afraid to throw in a day -- or even week -- of 4-6 cath's a day, even if you don't need them. I called that bladder vacation. Then I would go back off the cath.

So again, congrads but don't be surprised if you start to see diminishing returns as your bladder will no doubt start to stretch a little. Again, that's when you start throwing in the caths.

Glad you stayed off the Foley, but wouldn't have been the worst thing, of course I've never had a Foley so easy for me to say 😃

Jim

I will just add that there is another reason to throw in a few caths every once in awhile. That's because, at least for me, the body sometimes needs to get used to the catheter. Stay off it too long and you start to become a catheter virgin, meaning it just might hurt or irritate if/when you have to use it. However, if you do it every once in awhile, you keep the system catheter friendly.

Jim

I can only envy those of you who can use the on/off method as I still have no NVs and rely on my SpeediCaths to get me through the night. BUT I am only 6 months into my CIC journey so am a relative newbie but am hoping to attain the positive results of a rehabbed bladder like others here who now enjoy the on/off method.

Best of luck to all!

Patrick

Thanks Jim for validating my experience. I was starting to wonder if it was my imagination as there was so little interest in my post. This is the first independent confirmation of your own experience as far as I know so I think guys should take notice!

Anyway, Hank wrote to me that I should try the Cure catheter as a softer alternative to my Coloplast coudes.

What do you think of the Cure catheter? Could it work for my extreme prostate?

Thanks again for everything. I wish men would pay more attention to your posts. It could save them a lot of trouble.

Howard

Hey, Howard,

This is great news! I've always been envious of your ability to do such great NVs. I'll bet your urologist will be shocked when you share this with him! Keep up posted on how this goes.

Stebrunner

Hi Howard,

I've read several reports of men improving overall bladder function through CIC. The on/off method just take it a little farther, at least for me.

I can't remember if I tried Cure Cath or not, but I have tried close to a dozen. The best catheter for you, is the best catheter for you, not the one that works best for me or anyone else.

My understanding is that you have only had once incident in "x" number of years with your current catheter, so that makes a good case for not switching. And while it's logical to blame it on a specific catheter, who knows what really happened and if it could have happened with any catheter.

Yes, the Speedicath's are harder, but for me that makes them glide better and not get "stuck" and for me less friction translates into less irritation. That said, no harm trying a new catheter.

But back to your bleeding issue. Is there any not to intrusive way that your urologist can see what is actually going on and if things have healed other than just have you start CIC again and see? Maybe not, but might be worth asking.

Jim

Hi Steb - thanks for the encouragement. When I told my urologist' nurse about this and that I stopped my Avodart/Uroxatral she said the doctor said to tell me to get right back on my meds and pt a Foley in and stop "my nonsense"!!

I don't think so!

How are you coming along?

All the best

Howard

Hi Jim,

Thanks so much for everything.

I got through the night ok w/o having to CIC again so that makes 4 days now.

Just now after working in the yard I came in and measured 400 cc !!! Not only that, it came out with such force that it actually splashed in the measuring hat requiring a clean up!! I haven't made a splash (in more ways than one!) for a good 15 years.

I cannot get to speak with my urologist. All I get are call backs from his angry nurse who tells me to just put a Foley in. When she heard I stopped all my BPH meds for 5 days she exploded at me. Sometimes I think these doctors want to keep us dependent on drugs and devices and procedures so we never discover that our bodies can self-heal in some cases.

I wish more men on CIC could know about your on-off strategy. I tried it 2 years ago when you first wrote about it. At that time I was 2 years into CIC and it did not help though i did stay on my BPH meds when I tried it. I wonder to what extent all these meds contribute to retention? I plan to "go with the flow" for a while as you say.

My wife said the same thing you wrote here about changing catheters. I've done over 5000 and just had one incident. I did request free samples from Cure according to Hanks suggestions so it will be good to have them available as an option.

I guess at some point I will have to try CIC in the night to see if the bleeding has stopped but for now - no way. I will also have all the Foley materials available should I need them.

Thanks for being there for all of us. I hope you are doing well.

Howard

" When I told my urologist' nurse about this and that I stopped my Avodart/Uroxatral she said the doctor said to tell me to get right back on my meds and pt a Foley in and stop "my nonsense"!!"

Time to get a new urologist. While my uro would probably not have recommended CIC (how many do lol) he was both pleasantly surprised and supportive, especially when he saw my results. He went so far to say that my NV's and PVR's were as good or better than could be achieved by TURP. You want someone like that who will support and work with you.

Jim

Hi Patrick,

I'm 6 years in to the CIC journey, the last 4 of which have been with no NV's. I was kind of getting used to it. The catheter I was using was outstanding (speedicath compact male) and very discreet. Then my uro suggested I go off the alphablocker since I was cathing anyway. It caused something to close up in the urethra, I couldn't pass the catheters and I had to give up the male compact - probably because it is fairly stiff and not coude - although the proximal end which goes past the prostate and in to the bladder is only 12Fr (the distal end is 18Fr). Short of a promising procedure, I really want to get back to that catheter; however, thus far no luck.

Best of luck to you!

Howard,

Thanks for the nice words. I did have one more thought on re-reading your posts. I didn't remember you were on Avodart/Uroxatral. When did you go off? I ask because if very recently there still may be some residual benefit and that could be helping your flow. That also means that when they wear off, your flow could deteriorate. I'm not a fan of either, but you have to add them into the equation, especially in your situation where you want to stay off catheters for a bit to let your prostate bleeding resolve. So, if you just went off them, consider going back on until you are able to CIC without bleeding. After that, then experiment. Just a thought.

Jim

Hi Arlington, have you tried Speedicath Coude Flex Pro ? They're just like the compact, except with a larger pouch. Hank

Hey Arlington,

Thanks for the feedback. I haven't been on any alpha-blockers since Flomax triggered my AFib shortly after starting it...I researched it and found a rare side effect is arrhythmia...so I went back to Saw Palmetto which I had been using effectively for years before my AFib was diagnosed and anticoagulants prescribed.

I use the Speedicath standard FR 14 with no problem and do use the compact when out and about...but sometimes I wonder if they completely empty my bladder as does the standard. Sounds like your experience with the compact is different?

Curious which "promising procedure" you are looking for...or do you plan on using CIC indefinitely? And I assume you are now using the standard Speedicath now?

Patrick

Hi Hank,

I did try them. They were way too flexible for me. Because of the flexibility, I found it hard to thread them through. Also, I don't remember them being telescopic like the compact.

Thanks a lot for the suggestion. I'll check to see if I'm mis-remembering!

I didn't notice having to cath any more w/ the compact due to non-emptying.

I'm following the FLA procedure w/ Dr. Karamanian and hoping he'll have some promising results w/ double blind, peer reviewed clinical trials (I had a PAE in 2015 which was unsuccessful primarily due to an enlarged median lobe).

Yes - I'm using the standard Speedicath now. I order half Fr14 and half Fr12 (because I was so spooked when I couldn't pass the catheters through last year I want to make sure I have a smaller size on hand as well!)

Hi Arlington,

How long were you off the alpha blocker before you developed problems? Now I am worried as part of my experiment which I started 5 days ago was to get off my alpha blocker (uroxatral) as well as my 5-AR inhibitor (Avodart) for the first time in 15 years!Thanks

Howard

Thanks Jim. OK - I will get back on both tonight as it has been 5 days since I stopped them - especially given Arlington's experience. My flow today had been unbelievable - nearly 2000 cc and the flow force is so great that it has actually burned my meatus! I'll see if getting back on these drugs causes any deterioration or improvement. Howard

Within a few weeks after i was taken off Rapaflo (silodosin).

• I'm using the standard Speedicath now. I order half Fr14 and half Fr12 (because I was so spooked when I couldn't pass the catheters through last year I want to make sure I have a smaller size on hand as well!)

Hi Arlington, I also have two sizes for similar reasons. My go-to is Speedicath FR12 Coude, and my back up is Speedicath FR14 Coude. Note that my back up is a size BIGGER not smaller.

It may seem counter intuitive, but in most cases it works like this. If for some reason (let's say your prostate is inflamed or your urethra contracted) the catheter starts bending, you then want a stiffer, larger catheter to push through. Think hammering a small nail through a hard piece of wood versus a larger nail.

I can't say going up a size will work in all cases, but this is the standard protocol. So...in your case you might want to have a few FR16's on hand, in case your FR14's don't push through. If that doesn't work, you can always try the 12's, or do it vice versa.

Jim

Hi Arlington, when I was still using the Speedicath hydrophilic, I had 3 sizes, 10, 12, and 14fr. I can hardly ever got the 14 through. It was probably 50/50 for the 12. My last resort was always the 10, always going in. I did consider size 8 at one point.

Now I use Cure 14fr. I also use some 16 and 18fr sometimes just for fun. I would go higher if I can find them.

Maybe it's the small FR12 tip of the compact unit that creates a smaller flow that make me feel like I'm not emptying compared to the "fire hose" flow of the standard FR14?

I tried the FR 12 standard but it's not as easy as the 14 as the smaller size is more flexible and needs more coaxing. The 14 is larger, stiffer and doesn't buckle when inserting like the 12, more like a "battering ram" to get through those 2 doors!

Bottom line, we are all different and use what works best for us. I have tried several others but keep going back to the SpeediCath standard FR14, my "go-to" cath!

Please keep us posted of any "promising procedure" you may consider as I may have a procedure down the road and would be interested. While I have become habituated relatively easily to CIC, not sure I want to do this forever... 8)

Patrick

One benefit of CIC is that in most cases you can get off both those drugs. So what I was suggestion is just to stay on them long enough so that your prostate stops bleeding. After that, there really is no reason for the uroxatral, because that just relaxes the muscle. Worst case, you just have to cath more. Best case, it really wasn't necessary.

Avodart, on the other hand, can shrink the prostate. I've stayed away from it because of the sfx. Personally, I'd try to get off of it with the uroxatral after the bleeding stops and see what happens, but keep in mind this is just what I would do and I have never taken it. You could always go back if it doesn't work out and you have CIC as a back up.

Jim

Thanks Jim. I took both pills again earlier. I wondered if the alpha blocker as a smooth muscle relaxant was adding to my retention problems so when I stopped it 5 days ago my bladder muscles started working better giving me better flow to where I don't need to CIC at all.

I will see if I regress after this one pill. If so I will stop it again. It is an interesting experiment and may have relevance for men on these alpha blockers with voiding problems.

As for the Avodart, it did shrink my prostate by half over the first 5 years but that was 10 years ago and my prostate has more than doubled in size since then even though I still take the darn thing. I've tried to get off of it over the years but suffered Avodart syndrome where the prostate undergoes explosive growth. The side effects are terrible and it is a very bad drug - Catch 22.

What is with sardines and spinach? I shouldn't make fun as I eat canned salmon and broccoli every day. Howard

Hi Jim,

I found an NIH study from 2013 on 200 men who were given alfuzosin for 24 weeks and then the ones who responded well with reduced symptoms were taken off it and followed for another 24 weeks. As the Conclusion excerpt below shows they continued to show good improvement and did not need to take it again.

I'll be interested to see if the one pill I took tonight reduces my NV. If so that is it for alpha blockers. Earlier this evening I had a 350 cc void with splashing !! I haven't had that for 20 years! It has been like that for 4 days.

BUT if my bladder fills up to more than 500 cc then I do have trouble voiding again. This is my problem at night. If only I did not need to sleep! It seems now that as long as I can stay below 500 cc then my detrusors can handle the job. This is a first. Thanks. Howard

"Conclusion: When patients with BPH displayed symptomatic improvement upon treatment with alpha-blockers, the improvements were maintained in a select subpopulation of patients without the need to re-administer the alpha-blockers."

I agree with all of that.

Yes - the 12Fr is at least 30 seconds slower than the 14FR - in emptying.

Hi, Howard,

It's been exciting following your sudden change of situation. Are you still able to go without CIC? What happened when you tried to cath the other day? Did the bleeding start again?

I'm now 4 1/2 weeks post FLA. This weekend I noticed some significant changes. My NV stream has been the best its been in over 5 years several times, and my NV amounts are slowly increasing. Last night I had a double NV before cathing, and the NV volume exceeded the cathed volume for the first time.

As things continue to improve, I'll probably be trying Jimjames on-off strategy. Seems that my pesky median lobe issue may be solved, and I am hopeful that I'll be able to drain my bladder completely on my own.

Stebrunner

Hi Steb,

Glad you are having success now with the FLA. Sometimes I wish I had had a median lobe so I could just get Dr. K to laze it off and be done with it.

I've been having an interesting time with my on-off strategy. I managed to go until yesterday w/o doing one CIC! My NVs during the day were 300 cc in 10 seconds! I felt normal again.

But at night I had some problems because while asleep my volume built up to 600 so I had to get up every 3 hours and NV. Surprisingly the NVs were good but not enough. With CIC I would just do one cath and then sleep through the night.

Because of my high speed flows I developed really painful urethral irritation. The flow was so strong that it enflamed the urethral tissue terribly.

Meanwhile I had stopped all my drugs and supplements except for Avodart as I am afraid of a rebound effect. I no longer take uro-xatral. I had also stopped my daily D-Mannose for bladder health.

But 2 days ago when the urethral irritation started I restrated taking D-Mannose. Almost immediately I notice my flow rate drop dramatically!! So oddly enough over the past 2 days my urethral irritation has subsided a lot because my flow rate is back to my pre-on-off strategy. But this is curious about D-Mannose and I do not understand it.

So last night I awoke at 1 am in full retention and could not NV a drop. After 12 days I finally had to do a cath. I was really scared if there was still bleeding. The catheter was difficult to get in and the urethra still burned but I did empty out about 800 cc. While I slowly pulled out the catheter I did notice a small amount of fresh blood in the lower 3 inches of the catheter but that was all. There was no bleeding into the toilet afterwards.

Today I continue to have good NVs throughout the day at 200 cc each time. There is no burning but I know I am carrying a residual of 200 cc. The high speed flow is gone but I still take D-Mannose as ironically it helps me to cath by slowing the flow rate!

I am trying to just keep CIC at once a day at night when I am in retention until there is no more bleeding. I do hope the bleeding is not worse tonight as the next step would be a Foley.

I would like to try the Cure catheters that Hank suggests but I am in Canada and they will not send samples here.

Thanks for asking! Be well.

Howard

Hi Howard, I am also using two other catheters that are just as soft as Cure : Convatec Gentlecath and Hollister Apogee IC. They are not hydrophilic. I haven't tried the hydrophilic ones yet. Hank

Hi Howard,

I find that the size of the catheter affects the pain/bleeding even more than the rigidity. The smaller the better until the bleeding is under control. Less aggravation.

Best of luck,

Steve

Congratulations!

What % of your voiding was NV prior to the FLA?or were you in full retention?

Good luck!

Thanks I tried 12fr again a few days ago but they just bunch up at the start of the prostate like wet noodles.

Hi, Arlington,

Prior to FLA the % of my voiding was about 20% or less. My natural voids had been slowly decreasing for the past year or two. Now I've had some NVs that are 50%. This should continue to improve over the next few months.

In 2015 I was hospitalized with acute urinary retention--even though I was still peeing. They drained 7,000 ml out, and after that I wasn't able to do a NV at all. In 2016, I had a PAE done, and after that, I started having NVs but still had to CIC 5 times a day.

Steb

Thanks Stebrunner.

I was hospitalized w/ acute urinary retention in 2014. Subsequently had about 50% NV. Had an unsuccessful PAE in 2015 - partially due to enlarged median lobe. NVs stayed at about 50% for another 9 months, then decreased to zero all of a sudden and I haven't peed naturally at all since.

I'm considering the FLA; however, probably not for another year or 2. I'm encouraged by your posts. Please keep us updated on your progress and continued good luck.

I always worried what would happen if I could not CIC. It became so natural that I took it for granted. This horrifying experience brought me back to reality. I sent in forms today to get on the wait list for a robotic simple prostatectomy sometime next Spring. I think the best thing is to just remove it as it will eventually grow back in all other procedures. Also I should not then have to worry about prostate cancer. This has been a real eye-opener! I know 4 men who have had the RSP and they all say they have a new lease on life. I envy them and their courage.