Intermittent self catheterization.

Hi Jimjames,

I'm in a similar situation w/ CIC'ing and watching potential surgical offerings (although I'm not voiding naturally at all.  Please let this forum know (and I'll do the same) if you ever decide to go w/ one of them.  I'm keeping track of FLA reports but, like you, am waiting for clinical evidence w/ regard to BPH.

Thanks a lot!

Hi Arlington,

Will do, but like yourself I'm not enamored about any of the current offerings.

Current situation is that I only CIC 2-3 times per week, empty completely the rest of the time and have an IPSS in the "mild" category.

If situation stays the same, it would be hard to convince me to do any future procedure unless the risk/reward ration was significantly different from what I see today. Your case is different in that you're not having any natural voids and therefore understandably might seek a surgical solution sooner.

That said, even if I was in your position, I would still not jump into any of the current offerings at this point.

Jim

Thanks Jim.   Agreed.

Arlington - if you're doing cic with no problems, this decision is purely elective. That said, your situation is very different from JimJames'. He's fine most of the time while you don't do natural voids at all. If the culprate is your prostate, something like Rezum of FLA carry very little risk. Worst case scenario is that they don't help much, but the nightmares that can (usually don't but the can) happen with TURP/Greenlight in the way of permanent problems are almost unheard of with Rezum/FLA/PAE.

If I was tied to a catheter 24/7 and was a good candidate for one of the above, I would do it. You're already handling CIC with no problem - if you have one of the procedures, you'll keep it up and start trying to void naturally. You either will or you won't - and if your prostate is a big part of the reason you can't void, you probably will. If not, nothing really changes. Not what you want, but not a disaster either - and if you have a good chance with one of them, its could be a risk worth taking.

FWIW - I probably could have gone indefinitely doing CIC (my life was starting to be ruled by the bathroom, although I could void OK with a little work except in the middle of the night) but didn't want to be tied to having a catheter so I had Rezum done. I was a slow healer - wasn't doing well for about 6 weeks. But 2 years later, I'm glad I didn't. No catheters to hide and when I walk into a bar or restaurant, I don't even look for the bathroom anymore.

Thanks a lot.  I'm definitely considering FLA but would like to see clinical results specific to BPH.  I already tried PAE without success.  My issue is definitely the large median lobe sticking in to the side of the bladder neck opening.

I'm really glad that Rezum worked out well for you.

Hi Jim - Thanks for all your help here. I am a great fan of yours and have been doing CIC for nearly 2 years thanks to you. I've read most of your posts and follow your 400 rule closely.

I had a big problem last night and need your help (and others of course).

I use Coloplast Speedicaths 14fr coudes and they always work fine. I do not have a median lobe - just big honker side lobes (240gm).

Last night as usual before bed at 1100pm I NV/CIC with my usual 200/200ml. Throughout the day my NVs are about 200ml and I do CIC late afternoon also with 200/200.

So last night as is usual my nocturia kicks in after the first REM cycle and I awoke at 1:30am with lots of pressure. I did a perfectly normal NV/CIC with 100/550 which is typical. After that I usually sleep ok through the night.

BUT last night I awoke an hour later in terrible pain at the tip of my penis and just inside about an inch or so. It was awful awful burning. I then started to have pee/poop spasms every few minutes. I thought it was game over!! This went on to 3 am at which point my little pee squirts were bloody. I took 2 AZOs and laid down but it was a race to the toilet every 5 minutes.

I had some 5mg prednisone pills and some Macrobid on hand from an episode about 6 months ago but it resolved quickly so I never took them.

Anyway, I took one of each at 5am and finally fell back to sleep for a few hours. This morning I used the 10 parameter dip stick you recommend and it showed high leuk, high blood, acidic pH; slightly elevated protein and NO nitrites. The pee was very cloudy but the visible blood has stopped.

Currently I NV about 150ml every 30 minutes and the spasms are gone. Prednisone keeps a good urine flow so I dare not try to CIC now. I will have to finish the 7-day supply of Macrobid and will take in a sample on Monday to get a C&S done.

What is going on?? I am very clean (wipe the tip with an antispectic swab always) and of course use your dive bomb method. I dare not go to my uro or the ER as they will run a cystoscope for sure and cause more problems. You are the oracle for us here as your CIC-subjects.

Thanks Jim.

Howard

 

Howard,

C&S Monday makes sense, taking macrobid first OK under the circumstances although I tend to wait for C&S, but why introduce another drug, prednisone? I also question stopping CIC. Assuming it's a UTI, best to empty your bladder completely which CIC does. Also, why do you think your uro will scope you? I would think that would only be done if they ruled out UTI and it didn't resolve by itself. Some blood in urine, cloudy urine and elevated leucocytes are fairly common if you CIC, and in and of themselves don't require treatment.

Jim

Thanks Jim. I use prednisone to bring down the inflammation so I can NV. It works in general for my BPH which shows its inflammatory nature though I only do that in emergencies. Also this infection/irritation completely blocked me from NVs so the 10mg opens me up nicely for about 12 hours but I know it is a bad drug.

If I CIC with an infection say in my urethra, wouldn't that push the bacteria into my bladder and even kidneys causing a worst problem? Also the burning in my urethra is very bad so wouldn't using the catheter just inflame that even more reigniting the spasms which have stopped now?

Howard

Not that knowledgeable on prednisone so I'll pass here. I always cath more with a uti, not less. The idea is that an empty bladder helps you get rid of the uti faster. Never worried about pushing anything in my bladder, especiially if on an antibiotic. I mean what would the alternative be, a Foley?  At this point, not sure why the spasms would be related to CIC, but if they come back then you should discuss with your doctor.

Jim

Thanks Jim. So you just push through the burning and bleeding to get the catheter in and not worry about it? Your advice has ALWAYS worked for me so if this is what you recommend I will give it a go.

I can only tell you what has worked for me but you have to listen to your body, and also your doctor assuming he is knowledgeable about CIC. In my case the bleeding and burning has always been related to the UTI, so CIC was helpful in emptying the bladder and therefore shortening the UTI. If on the other hand you find that CIC is making things worse then something else may be going on. But in that case, your bladder still has to be emptied, either by a Foley, suprapubic, or the Prednisone which again I can't speak to very well.

Jim

Hi Howard, my guess is you injured your uretha somehow doing CIC. It happened to the best of us at times. When that happens, I would stop CIC if I can still void well. Otherwise I'd go down to the smallest size catheter that I have, which happens to be size 10fr, to minimize the abrasion to the injury. It usually goes away in few days. Hank

Hi Jim - you are correct as usual - my bladder pressure was very high at 11 pm so I decided to give it a go and all went well. My NV was 150 followed by my cath at 350ml. What a relief! Then I slept to 5 am and was awakened again with high pressure so I did another CIC (no NV) and took out 500ml. Again no issues with burning or bleeding - just some much needed relief. So thanks again for being there for us. Howard

Thanks Hank. I was planning to try your idea if I couldn't get in with my 14 but it worked ok. I have 12s available but usually they just bunch up because my prostate is so large, even with the coude tip. Anyway, thankfully I am ok now. It sure is scary though to think I cannot do my CIC - it is my lifeline to keep me away from the doctors. Take care. Howard

Glad it worked out. If you don't already, you should probably have a few FR16's in stock. It may sound counter intuitive to some, but as you have found out, going down a size does not necessarily make for an easier cath, in fact quite the opposite. You should still have your C&S tomorrow to make sure you're on the right antibiotic, and I would also go over the situation with your urologist (spasms, etc) assuming he's knowlegeable on CIC, which often isn't the case.

Jim

Just a general question about catheter lengths: I know the FR # refers to circumference in mm but doesn't the length also go up as well to keep the catheter flexible? I once saw a FR 16 Speedicath in the medical supply store and it looked to be a good 14 inches or more! So does that make it more difficult to aim and use? Thanks Howard

14" is fairly standard length regardless of FR size. Some are a bit smaller such as the Coloplast Compact which I personally find too short. I believe there is at least one manufacturer that makes one longer than 14" but the name escapes me for now. Never had a problem with the 14" Speedicath in FR 14 or 12 even though I only hold it by the plastic funnel. I do get bending with FR10" but never experimented if I could get it in if I held it closer to the insertion point as opposed to the funnel. I suppose some experimentation is in order if one is having issues getting it in.

Jim

I wonder how long that FR30 is referred to earlier? If it were just 14 in long then it would be quite rigid (like a rubber hose) and could cause urethral abrasions or worse. Anyway, I have done over 2000 self-caths now with the speedicath 14 coude and have no intention of changing.

Howard

Howard,

No judgement, but whatever the fellow was doing with the FR30 catheter, I wouldn't consider it CIC, so really have no comment other than anyone emulating what he did is doing it at their own risk and probably without support from a medical professional.

Jim

Jim, it is how I use 10fr catheters : holding it closer to the insertion point as opposed to the funnel. Just make sure your fingers are clean. Hank

Hi, Howard, and others. I researched indwelling (Foley type) catheter length in detail because it was a parameter of personal interest to my-self. The catheter manufacturing industry went through stages of consolidation and the few that still exist are off-shore. In the shakedown process they agreed on a standard overall length of 16 inches, This includes funnel, balloon, orifices, and tip. It is irrespective of diameter (Fr.) which can vary widely.

Another important issue that came to light is the behavior of the coating if it is a hydrophilic device. By "Intermittent" the manufacturers mean it goes in - it drains the bladder - it comes out, all within a maximum time-frame of 90 seconds. I used to think the intent was to reduce the possibility of creating UTIs. Later I discovered that there is another very important issue here. The moment the hydrophilic coating comes into contact with air and the water or saline solution it is immersed in, its quality (slickness) begins to degrade rapidly making it sticky and likely to adhere to the delicate lining of the urethra. Any movement of the catheter - in, out, or rotation - can tear the urethral lining causing possible bleeding and future scarring.

Thus, if the objective is to stretch  the urethra, which might require a much greater time-frame, you should use a non-hydrophilic, common-garden catheter, which does require manual lubrication. In such cases do check that you are not allergic to any of the ingredients contained in the lubricant, such as Chlorhexidine Gluconate in particular.

For those of you interested in longer 16+ indwelling per-urethra catheters, please send me a Private Message and  I'll be happy to give you the source and contact info.

Good luck to you, and happy, comfortable cathing!

Warm regards, alan86734

Thanks Alan for this very important posting. It explains my problems over the past few years with CIC and I am very grateful to you for this important discovery.

I use Coloplast Speedicaths 14fr hydrophilic coude just as you mention. I have a very large prostate which often takes 2 minutes to get into. Early on I had  a lot of urethral burning and UTIs so I started to add globs of lubricant down the tube which stopped the problem. I would just hang the catheter sleeve on the wall and pull down the sleeve half way and then squeeze in a lot of goop and then wait a minute and then pull out the catheter slowly so it got coated. This solved my problem.

But sometimes I notice that when I take the catheter out after draining the bladder it sticks a little and I need to pull to dislodge it. This will happen if I am not careful to coat the catheter fully and then I will develop irritation in the urethra afterwards which is very painful and looks like  UTI but the C&S tests always come back negative.

So your research would solve my current mystery. Last week I cathed as usual before bed but then an hour later I awoke with severe burning in my urethra and what seemed to be spasms of spurting blood and small NVs every few minutes. I m still dealing with the aftermath of it but it is getting better now.

Your information would solve this mystery because if I had not used enough lube then I may have pulled on the mucous lining of the urethra when I was taking the catheter out which would explain why it took an hour to develop. My doctor always thinks it is a UTI and gives me Macrobid but it rarely is.

So thank you Alan so much. Coloplast should have a warning in their booklet that displays the information you discovered for people with large prostates that take several minutes to cath.

From now on I will be more careful to coat the catheter fully with the lube. I will also call Coloplast to send me some non-hydrophilic samples that are 14fr and coude tip.

Thanks so much. How timely!! All the best to you.

Howard

Hi Howard,

I'm all for experimentation, but personally have never found an issue with the hydrophillic catheter after only a couple of minutes. It takes me less than five seconds to get into the bladder, but since I have a bladder diverticulum, I can sometimes be in for a couple of minutes trying to drain everything out. Maybe that's because I'm moving it around as opposed to just leaving it in one spot. Anyway, let us know if the extra lube helps or not. When I used lube with my red rubbers I found surgilube very slippery. It comes in individual use packs which might be more sterile.

Jim

My CIC does not feel like being tied to it. I use it when I have the urge to go which is 4-6 times a 24 hour period. The time variation reflects how hydrated/dehydrated I am. That's about what my life was like before my prostate began to impede urination. I went approx 20 years with progressing urination frequency problems. Urologists gave me no relief plans. They just said come back in a year and recheck how you are doing. I would drop off their grid for even 5 years then go to a new one.

When I virtually could not urinate, was dripping out about 50-75 cc. out at a time and going as much 24 time in a 24 hour period, I went back again, this time placed on CIC immediately. The relief was so great I really don't want to experience a surgery or even laser. PAE might be acceptable to me but I think it works slowly over time.

As for hiding Caths, I have a great new solution, pants made by SCOTTeVEST. They have hugely deep pockets which hold 3+ caths, several iodine prep pads and small packets of surgilube, easily along with my car keys and they don't show! I liked the first pair I purchased so much, I bought a second pair and they are now my everyday go to pants.

Hi Jim - It's amazing that just when I think I know it all about CIC I learn new things - often the hard way. I never knew the info that Alan posted here about exposure of the hydrophilic solution to air and the 90 second time limit. Given my very large prostate and the time needed to get in I thought I had worked out a pretty good work around with the extra lube added to the sleeve. But in so doing I was exposing the catheter fluid to air for about 5 minutes which could explain why it "holds up" on me sometimes when I pull it out. So it seems I may have been pulling on the urethra tissue and damaging it leading to my intermittent problems and irritations. I guess most guys get in pretty easily w/o the obstruction I have. I remember the "1 - minute club" but I never made it.

Always something new to learn just when I thought I had it figured out after 2000+ caths!! Thanks Jim (and Alan). Howard

 

Dear Howard, Many, many thanks for your kind words. Makes it all worthwhile, but I for one, as I'm sure most of the others, do not seek adulation but rather what is best summarized by William Shakespeare's "Saint Crispin's Day Speech"

... We few, we happy few, we band of brothers;

For he to-day that sheds his blood with me

Shall be my brother; ...

I'm sure if Shakespeare were around today he would be quite happy to bring his piece up to date by including "Sisters". But, be as it may, I'm sure this sums up the spirit of our actions. So, to Howard and to Frank (no, I haven't forgotten you) I am glad that we could help.

Warm regards, alan86734.

 

Jim, do you think it would be safe to go swimming or sex without a condom, to avoid getting a uti?  I CIC around three to four times a day.  I was wondering if bacteria, could be pushed up the urethra and cause an infection in the bladder, because of the catheter?

I don't think your risk would be more than anyone elses. Just make sure you use appropriate clean technique which IMO should include disinfecting both penis head and meatus prior to CIC.

Jim

Hi Arlington, Like you I have no NV. I was told by the first Uro that a urodynamics test would not make a difference . He then said he knew many men with no NV ,they had a surgical procedure done and were then able to urinate?Whats your perception of this?

frank,

Hi Frank,

Yes some of the surgical procedures work - some of the time for some people; however, they usually come w/ a lot of long term effects.  I don't think the risk is worth the potential reward.  That's why I'm continuing to watch the results of the FLA and am looking forward to a clinical trial involving BPH only patients. 

Frank,

Sounds like you need another urologist. I'm sure there are "many men" with no NV who had a surgical procedure and they were able to urinate. I'm also sure there are many men with no NV who were not able to urinate. Do you want to play a guessing game with your surgery? That's exactly what your urologist is asking you to do. Urodynamic testing is not perfect, but it will give you one more important data point to help determine whether a surgery might or might not help you. Best to get it done by someone who believes and uses them regularly and not a doctor who you have to twist their arm. The best is video urodynamics but you might have to ask around on that, and a good start would be a major teaching hospital.

Jim

Jim, I had a urodynamics test.They said i have bladder activity. He then said i don't need another urodynamics test.I have a diverticulum ,median lobe and promient detrusor muscle.I asked if surgery would give me a NV, he said he would comment on this,{ no guarantee}- I will discuss this with another URO on April 5. What can i say to this ? Thanks 

jim,

Frank,

Sorry I had you confused with someone else. Yes, I remember you had urodynamic testing. I believe your first urologist gave you a 50-50 chance of normal voiding if you got aggressive with something like TURP and not so good a chance with something less aggressive. That sounded like a reasonable assessment. Let us know what your new uro says.

Jim

 

I think water ablation is supposed to be in line for FDA approval soon. Its supposed to do what TURP does without the attendant risk. If so, it might be a safer alternative.

Hi, What is water ablation? Do you know where i can read up on this?Is this Rezum?

frank,

Jim, The other URO  said he would give me a 0 rating as to my having a natural void? after surgery.

 I'm going to discuss this with a follow up appoint April 5th with my regular URO.Do you know what

water ablation is?

frank,

Aquablation is a turp like procedure that can be performed in the urologist's office. Sounds promising, but I'd wait at least a year until more real life patient data is available. It has just gotten FDA approval so there's only trial data to look at. I wouldn't want to be one of a urologist's early patients for this one. Maybe patient number 100 or more, depending on how this pans out.

Jim

Water ablation is a much less invasive, non surgical way to perform what a TURP does. I agree with jimjames - you don't want to be first out of the gate with this. The risks aren't there as they are with TURP, but the recovery isn't any shorter.

OB, If the training is anything like with Rezum (3 hours, maybe) I'd be scared sh*less to be in the first wave of patients. And while the machine does the cutting with high pressured water, large amounts of tissue are removed, just like with TURP. The leap here is to trust the machine more than the surgeon, but that still has to be proven in the real world.

Jim

Jim , Today, i waited 5 months for this appoint,and it took all of 5 minutes . I Was told a i have bladder obstruction,and prostate enlargement. I showed 2 cystoscopy's taken 2016 and 2017.2017 said i have a diverticula,median lobe,promient detrusor muscle. I asked if he does uro-lift and rezum.No ,he does turp and GL lasser,and all of the procedure's are the same .I asked what are my changes of getting a NV. He said 75% chance i would be incontinent, 50 % chance it  would work.He said the 2017 cystoscopy read was the objective read ,My 2016 showed the same , however it does not say the same.He says to keep doing CIC.

frank,

Dennis,Do you have urine retention? No natural void? I'm trying to understand my problem by asking if you have this problem? i do and also a bladder obstruction i was told ?

thanks for this info.

frank,

Hi Frank,

The 50-50 chance of natural voids is consistent with what I believe your first urologist told you. Not sure why he said a 75% chance of incontinence. Did you ask why so high?

If I read it correctly, he isn't recommending either TURP or GL, but that you continue CIC? Based on the figures he's giving you, I don't think I'd choose either as well.

Jim

jj - I have no idea what the training consists of - I assume its considerably more than Rezum as its a much more invasive and involved procedure. FWIW, my uro thinks it will be a much shorter, less dangerous way to achieve TURP-like results, with as long or possibly even longer recovery than TURP.

All of the procedures aren't the same - your doc is out of date and out of touch. You can't have a 75% chance of being incontinent and a 50% chance of having a natural void. I would see a Urologist at a major hospital - one that does the new procedures like Rezum and Urolift (although it sounds like you aren't a urolift candidate.

If what your doc says is true about incontinence (and I doubt that with something like Rezum) then I would recommend that you not do anything. CIC is WAY better than a life in diapers. But I'd see a top doc and see what they say about something like Rezum's chances of leaving you worse. If not, it might be worth a try. But even a 20% chance of incontinence wouldn't be worth the risk IMO. You can live a perfectly normal life doing CIC - you can't in a diaper.

Frank,

Back to the incontinence issue. TURP, and I assume GL, have a high rate of TEMPORARY incontinence which resolves in most cases after a few months. This may be what your doctor is talking about as opposed to permanent incontinence. Always a good idea to call and ask for clarification.

Jim

I couldn't find anything about recovery time in the phase III presentation on the Procept Biorobotics website, so you doc might be correct as I found the presentation biased in how they emphasized the good points and muted the not so good. Of interest is that trial group PVRs were mostly around 100ml and IPPS scores in the low 20's as compared to many here where both PVRs and IPPS scores were higher. Prostate size was also under 50 in most of the trial participants. This is not surprising as most of the trials cherry pick. Hopefully this will be a better and kinder form of TURP but we shall see. The retro data doesn't make much sense where they claim around 7% retro against the TURP control of 28% retro. Now on what planet do they come up with only 28% retro from TURP? This brings into question not only the Aquablation retro figures but perhaps other things. As to training, Aquablation is almost fully robotic with the doctor only entering in parameters on a computer. Once the incision begins, it's hands off. Great if it works but what if the computer or robot has a bad day.

Jim

Jim

I would suggest that with an IPSS score in the low 20s and a prostate under 50, no TURP like surgery is called for anyway. Ruezum, urolift, ect would probably do the trick with much less fuss, muss and recovery. Robotics are pretty common these days and are the standard for a lot of surgeries now, and I think that's the big improvement over TURP. They don't have to open you up, can be very precise and there are far fewer woopsies. From what Iv'e read, RE happens closer to 98% of the time with TURP than 28. Sounds like they really tweaked the stats in their favor and put a lot of men through a lot who could have had a quick procedure and been close to fine in a couple of weeks. ARGH!!!

As I understand it, this is not a typical robotic surgery where the operator (surgeon) controls the robot. Once the computer is programmed, it's hands off for the surgeon as the machine does all the removal by itself. That's why I said I hope the machine is well serviced! Yes, something very wrong with the retro figures. I'm thinking that it might have been a bad/sloppy/confusing follow up questionnaire that ending up grossly underestimating retro in both groups. That's the charitable explanation. But working with that assumption, then I'm guessing 20-25% retro with aquablation which is around 25% of expected retro with TURP.

Jim

Jim

JIM AND OB, MY URO SAID I HAVE A BLADDER OBSTRUCTION AS WELL AS PROSTATE OBSTRUCTION. I F I HAVE SURGERY ,BECAUSE OF MY BLADDER, I HAVE A 75% CHANCE OF BEING INCONTINENT FOREVER. BECAUSE OF MY ENLARGE PROSTATE, I HAVE A 50 % CHANCE IT WILL WORK.DOES THIS MAKE SENSE?I'M CONFUSED. HE DID SAY TO KEEP DOING CIC?

FRANK,

Hi Frank

I replied to your PM with the following, thought I'd also post it in case you check your PM's as often as I do.

Hi Frank

I've been doing CIC coming up on two years. I can still do NV's in the afternoon but due to my continued  neurological decline I can't at night and first thing in the morning.

I don't have much obstruction, I am taking finasteride and that has shrunk my prostate, for me its just a case of my bladder not working .....similar to the guys with a spinal chord injury.

My docs are also telling me to keep doing CIC as there is nothing surgically or other with interventions they can do. I think although the causes are not the same both of us can plan to CIC forever.

The frequency of doing CIC depends on my fluid intake, if its high in the evening then my total void at night and first thing in the morning might be 600-800cc. If that's the case my docs tell me to increase the frequency so that the total void stays below 350 cc. I don't worry about how often I do CIC just keep an eye on the total void.

For some of us it takes a long time or forever to get used to the idea of doing CIC for the rest of our lives. What works for me is knowing that by doing CIC I am in control and can always make sure my bladder is completely empty thus preventing damage to my kidney's and/or the potential of kidney failure which has killed more than a few of my friends and relatives.

 

Frank,

I'm not a doctor but it sounds like he means you have Bladder Outlet Obstruction (BOO) caused by an enlarged obstructive prostate. This is what BPH oftentimes is. My understanding is that the incontinence caused by TURP is mostly temporary and only permanent in a very small percent of cases. It's possible that you misconstrued what he said, it's also possible that there's something else going on that I don't understand. If in doubt, I would contact him again and ask: (1) Is the 75% incontience figure temporary incontinence or permanent; and (2) If permanent, why such a high percentage. Third question would be: (3) Are you suggesting I have surgery or are you suggesting I just keep self cathing. My guess is that his answer to the third question would be that it's up to you.

Jim

Why do you attribute your inability to do natural voids at night and in the evening to a neurological decline? Just sounds like at those times you are carrying too much urine, causing your bladder to be too distended to expel past the obstruction. Happens to me at those times as well. As to what your doc said about timing your cath's to bladder volume, I agree. However, it should be the total bladder volume kept under 400ml (or 350 if you like) and total bladder volume always includes any natural void just preceding a catherized void.

JIM You are right. I will email the question 75% incontinence for ever after surgery.due to bladder obstruction.This just kills me,i wonder if i got this bladder problem because i neglected the enlarged  prostate.This bladder obstructiion was  not mentioned when i did my first cystoscopy. Now i have a bladder obstruction. Lateral lobes, he says this is  bladder obstruction.Very confusing to me .He did say the decision for surgery is up to me.IF this is the case ,incontinence for ever ,there is no decision ,who wants to wear diapers forever. i asked his opinion ,do CIC. I'm going to see another URO.Any assistance {question's } would be appreciated.

frank.

Hi Frank,

I had a cystoscopy 2 years ago and the uro told me I had no bladder neck obstruction but just 2 very large lateral lobes that were pressing down on the urethra restricting flow. He wanted to do GLL but I said no. I told him I do CIC and he was supportive of that. So my point is that large lateral lobes (BPH) will restrict flow even if there is no specific obstruction at the bladder neck.

I do CIC 4 times over a 24 hr period: 10am; 4pm; 10pm; 4am. The first three are pretty good with a NV of 200ml and PVR of 250ml, But the one at night is always bad. Usually I cannot NV at all and my PVR is 500ml to 700ml. It seems no matter what I do I cannot reduce it. I don't drink or eat after 6pm except for salty potato chips as recommended by jimjames. I think it is just my nocturia which may be your case as well. If so it is unrelated to bladder problems. jimjames has lots of recommendations for nocturia and I've tried them all but the only one that seems to help is potato chips! I don't know your situation but it seems CIC is your best solution.

All the best

Howard

When do you eat potato chips ? Do you drink anything with them? Hank

"Why do you attribute your inability to do natural voids at night and in the evening to a neurological decline?"

Well, in my case that is my primary diagnosis due to a fairly severe brain injury. I have a PCP care provider who coordinates my care across a variety of specialists that treat my various maladies related to the TBI.

I'd suggest that Frank, at his age, should seek out the services of a geriatric specialist to coordinate his care across a wide range of specialties.  Relying solely on a urologist and focusing on what may not be his most pressing medical condition might not be in his best interest. There very well could be other issues going on that a urologist won't pick up on...

Regarding Potato Chips for Nocturia....

Howard,

I would like to clarify that I never recommended potato chips for nocturia, just said that it worked for me. This may be a subtle difference to some but I think it's an important one.

Unless proven otherwise, it's the salt/sodium content in potato chips that is causing you to retain more urine at night and therefore cutting down on your bathroom trips. The problem is that not only is the rest of the potato chip not very healthy (very high fat) but too much sodium many not be healthy as well.

So, if eating chips is going to be a nightly occurrence, I would suggest a couple of things. First, try replacing the chips with an equal amount of sodium (check the bag of chips for sodium content) which you could take in various ways without all that fat. I would also suggest you get one of those phone/computer apps like My Health Pal and track your total sodium intake throughout the day to make sure that you're not getting too much. Your bp and other health considerations should be taken into account as well. Another thought, if it turns out you're taking in too much sodium is to take in less early in the day and more toward evening.

If you do experiment, do let us know if plain salt works as well as the chips. If it doesn't, then the fat content could be at play mediating the absorption throughout the night. In that case, you could try for a healthier fat to take with your salt, or well, just enjoy your chips, with your doc's blessing of course

Jim

Hi Jw,

Didn't know that was your primary diagnosis but even so doesn't necessarily mean that is what is causing difficult voids when your bladder is very full. Not saying they are wrong, just throwing out an alternative theory/principle that very full/stretched bladders often don't have enough power to expel urine. That's the case with me  (and others) and I don't have any neurological decline. So, it's possible you have neurological decline but that isn't the cause of this particular problem. My question to them would be how come you are able to void OK when your bladder isn't so full? If it's important to know, and you haven't had it already, I would imagine that urodynamics would be helpful here where they could measure nerve signals during voiding both with a very full and less full bladder.

Jim

Hi Jim and Hank - I just take 2 handfuls of salted potato chips before bed (about 10 big chips) and before brushing my teeth. It really does help with my nocturia. I monitor my blood pressure every week and it is fine. The salt helps to keep the kidneys from dumping pee into the bladder at night. I don't know why but the biggest "pee dump" seems to occur after my first REM cycle of sleep which is about 2 hours after I go to bed. After that cath I sleep fine for the rest of the night and my morning volumes are ok.

I always try whatever jimjames tries to see if it works for me too (or doesn't work). Usually it also works so I am just passing it on.

Good luck.

Howard

Health issues aside, I still think it would be an interesting experiment to see if it's only the sodium or a combo of the sodium and fat content of the ten chips. I would be happy to work out the math for you if you post or PM me the label on your bag of chips, and count the number of chips in a bag.

Jim

Frank,

Maybe you misunderstood my post. I don't think you necessarily have a new bladder problem. I think it just might be the terminology different docs use. "Bladder outlet obstruction" is a basic diagnosis for bph. It's probably what you have always had, not something new.

Jim

Jim, thanks for clearing that up. You are right bladder obstruction is what he said i have. .Caused by BPH. I don't understand why he said i have a 75% chance of being incontinent for ever if i have surgery. He also said also prostate procedures are the same? Does this guy sound right ? i have my doubts. i will let you know what he says in me email to him.

THANKS  JIM,

frank,

hi Howard,  I also had 2 cystoscopy.I havent had a natural void since i started CIC 18 months ago. Howard Did you have urine retention ,also no NV? My first cystoscopy said i have lateral lobes. he said this is bladder obstruction due to bph?My URO didn't take much time to explain my problem. I waited 5 months for am appoint ,and my vist was 5 min. I don''t understand what lateral lobes are?Could you tell me about this, we both have the same problem ,difference is i cannot have a NV and  i do CIC 6 7 or 8 times a day.

thanks Howard

frank,

Hi Frank,

If you think of the urethra just being a thin tube that extends from the bladder opening down to the tip of the penis opening then about the top half (nearest the bladder) is surrounded by the prostate. So if we say the urethra is 8 inches long then the top 4 inches is integrated into the prostate gland.

The prostate gland is divided onto several lobes but for our purposes the part that transitions into the urethra is called the side lobes. This is where most of the BPH lives. So when we get BPH, the prostate tissue that surrounds the urethra in this region grows like crazy and compresses the little urethra tube which restricts the pee from flowing out from the bladder.

Sometimes though the extra prostate gland tissue grows up towards the bladder neck opening and even into the base of the bladder. They call this a median lobe and it can completely shut off flow from the bladder. In 5% of BPH cases there is no median lobe present - just those large side lobes that squeeze down on the urethra restricting pee flow.

The guys that had FLA with Dr. K almost all had median lobes which is an easy target for that procedure. Their side lobes were not all that large - in fact most of the guys had prostate sizes less than 100gm.

In my case, my prostate size is 240gm which is a monster and yet I can still NV on my own during the day if I watch how much fluid I take in.

Also the lack of a median lobe blocking my bladder opening makes it easier for me to CIC since I do not have to get around that obstruction.

Some guys even with normal size prostate glands ( i.e. normal size side lobes ) still cannot pee because all the BPH tissue has grown up into the bladder neck to form the median lobe.

I am not sure why I can NV at all. I think I caught it early enough and started to CIC right away which helped to restore my bladder (detrusor) muscles. When I first had my bladder scans 2 years ago my uro told me that my bladder wall was very thick with fibrous tissue and was heavily trabeculated. He said it was from pushing so much to pee and that I would lose all bladder function within a few years if I did not have an operation right away. He also offered me CIC 4 times a day. I had never heard of CIC and the thought was repulsive to me. But so was the surgery and its side effects. That was when I searched the web and found this forum and jimjames and the rest is history.

Hope this helps a bit. All the best.

Howard

Thanks Jim. I agree and will try what you suggest. I can do the math. It is an interesting idea.

Here is how the chips have helped me at night: I would CIC before bed around 11 pm say and then I would be awakened in agony around 2 am and would cath from 700 to 900ml with no NV. Then I would sleep through the night and at 6 am I would NV 100ml and CIC 250ml.

Since eating those chips before bedtime after my cath, I still am awakened a little later now around 3 to 4 am and have an NV of 100ml followed by a CIC of 400 to 600ml. Then I sleep till 7 am and NV about 200ml and CIC 250ml.

This is repeatable and if I do not have any chips for a few days I revert back. There are so many variables that I can hardly call this a scientific study but it does seem to help and makes  a nice bedtime snack too!

I'll try what you suggest and report back. Thanks

Howard

I'm on it!

Just remember, I get the patent rights for "Chips n' fer Less P*ss

Yeah, you just need to find out how many servings is ten chips and then the sodium amount and find and then use the equivalent amount of table salt.

Jim

Hi Howard, you don't have to eat potato chips, or sardines 😀. I tried various things before bed. One packet of sugar + 1/2 packet of salt works as well. I read that the combination of sugar and salt helps sleep. I usually just take what ever is available that has small amount of sugar and salt. A handful of cereal. A slice of bread topped with honey or jam or jelly. A granola bar. They all work.

Re nocturia, I used to have that badly, until I changed my eating schedule. Now I don't eat any wet foods (fruits + vegetables + soup + rice + pasta + etc) and consume too much liquid after lunch. My main urine production therefore has shifted forward from 1, 2AM to the evening, which can be more easily managed. You may want to try that. Hank

I think I sent you the details on a different thread - I get them mixed up. Did you get it ok or should I re-send it here?

Frank, sort of.  If I do  natural void, I can only void maybe 50 to 75 mls.  After doing a natural void, I could still have as much as maybe 400 mls. of urine left in the bladder. I definitely need to CIC. I guess my bladder, must be really flaccid.  I keep hoping that I'll have a reconditioned bladder, but it's not looking that great so far.  If I was a betting-man, I would not be betting on my bladder.  Hope this helps.

Yes, I responded, so I guess it was the other thread. Let me know if you can't find it

Hi dennis thanks for that info. Do you have an enlarged prostate also?

frank,

Howard, I want toThank you for all that info.i have learned more from you than my urologist.I hope i can  find a Uro  that will take the time to explain things. i have  been to 5 Urologists ,now i'm looking  for a 6 th one..Howard my prostate is 74 cc,how do you transfer cc into gm? I was told i have a diverticula and a median lobe, after my 2 nd cystoscopy. The first cysto said i have lateral lobes.My dr never told this is the reason i can''t have a NV..Do you know what causes frequency? i have to cic 6,7,or 8 times a day. i asked my uro ?he said just cic every 4 or less hours daytime. Bedtime up to 6 hours.If  l could wait 6 hours throughout the night ,that would be great?

Thanks Howard,

frank

Let me share another idea with you guys.  A while back I was prescribed the diuretic (water pill), Lasix (Furosemide), 20 mg. for my blood pressure and for some minimal swelling in my lower legs.  Well my blood pressure has been very normal, and the swelling is not a problem so I had Lasix which I never took.  So I figured if I could dehydrate myself, a little, before going to sleep, I would be less likely to pee at night.  So I tried 20 mg. Lasix at 5 pm, and peed alot up to about 11 oclock bedtime.  And would you know, I slept all night the first night, and now I get up usually only once (I don't take the Lasix every day.) 

So what I'm thinking is that the salt you all are eating is raising the sodium level in your blood. This does something to a hormone (maybe anti-diuretic hormone - don't know) which reduces the production of urine until the sodium level drops to normal.

Similarly, taking a diuretic and super-peeing between 5pm and 11pm, raises the sodium blood level and reduces urine production.  Just wanted to share with you guys what works for me.  

I'd recommend discussing this with your doctor before experimenting with Lasix.

Diuretics is another strategy for nocturia. Lasix is fast acting so your timing is right. Slower acting diuretics can be taken earlier in the day. Caffeine also has a diuretic effect and I've had mixed results with coffee and nocturia. Lasix is strong stuff so I agree discussing with your doctor.

The "chip" strategy works differently as I understand it. While a diuretic forces urination, sodium inhibits it. Two ways to achieve the same thing. And doesn't have to be either or.

As to the anti-duretic hormone, you can get rx meds and go that route as well. Then there's fluid management although if you have classic nocturia polyuria, the timing often doesn't help because the kidneys are waiting for you to lie down before they unload.

Afternoon naps and/or wearing compression stockings are also recommended for nocturia although you have to be careful with the naps if you're bladder is not up to it. I only have to self cath several times a week now, and lately one of those times is waking up from an afternoon nap. Yes, I'm producing more urine because I'm lying down, but then I have to get rid of it and my bladder doesn't like to be overfilled.

Jim

Hi Jerry - thanks for the info. Please be very careful with Lasix. It gave my father-in-law congestive heart failure and he eventually died from it so it is not something to experiment with.

There are various anti-diuretic hormone drugs but they have terrible side effects.

I think trying to find a balance with all the ideas of jimjames is best. they are non-toxic and may help. I don't think it is a good idea to try and limit fluid intakes during the day because we risk dehydration. It is important to test your fluid balance once in a while by monitoring fluid intake/output.

I wish I understood the physiology of nocturia better. I get the general idea but I guess I will have to learn to live with it. I just want to avoid those huge pee dumps and keep them below 500ml. I can get back to sleep if it happens early enough by taking Tylenol but if it occurs after 4 am I lie awake and worry about world events!

Thanks for sharing your ideas.

Howard

Hi Frank - glad to help. Prostate size is the same in gm and cc because the density is close to water at 1 gm/cc. So my prostate is about 240gm or 240cc.

I too am starting on my 6th urologist! I have my initial appointment in a month but I will just ask for a bladder/kidney ultrasound to make sure they are ok. I know he will try to push his specialty on me.

I don't want him to do a cystoscopy as they always irritate my large prostate and reduce my NVs for a week while I take lots of nsaids to get the swelling down.

I think frequency is that you are just peeing "off the top" of a full bladder. Before I started to CIC I was peeing small amounts every 30 minutes day and night. It was awful.

But if you are CICing so frequently do you think you totally empty your bladder each time? Do you keep a log as jimjames recommends? I do and it really helps to keep track. Maybe jimjames can help you with the diverticula as it stores pee and maybe that is part of your frequency because it empties into your bladder? I know he had a way to move the pee from the diverticula into the bladder while CICing. Maybe that can help.

Good luck.

Howard

Hi Frank,

It's not unusual to self cath 6 times a day if you have no NVs. It's just math. A void log is helpful and I know you've done that in the past. But like Howard mentioned, your diverticulum can also add to your frequency even if you self cath. I have a diverticulum myself so let me explain a little.

A diverticulum is like a pouch coming off the bladder.  The way mine works is that when my kidneys unload my bladder and diverticulum fill about evenly. So when I self cath I can empty the bladder but not necessarily the diverticulum. If this happens, then it's not unusual for the urine in the diverticulum to flow back into the bladder right after I self cath. If this happens I can get the urge to void as soon as five or ten minutes after I self cath. This may be why you also feel urgency at times right after you self cath.

Lately, I have found that by leaving the catheter in longer, and moving it around a bit, I can drain not only the bladder but part and sometimes all of my diverticulum. This doesn't mean it will work with you because the shape and position of your diverticulum may be different from mine. But you could experiment by leaving the catheter in for a minute or so after you empty it and see if the urine starts to flow again. Sometimes contracting my abdominal muscles helps. If it works, that's great, if it doesn't then it's not a big deal. I've gotten used to the diverticulum empyting into my bladder after I empty it either with CIC or with a natural void and it's just part of the process.

Jim

I should also add that because I have a right sided diverticulum, I will tilt my right pelvis upward after I empty my bladder while still keeping the catheter in. I have found this helps both transfer the urine from diverticulum to bladder as well as making it easier to possibly get the catheter into the divertilum itself as the diverticulum decompresses. I have a portable bladder scanner so I have been able to observe this whole process real time at least with a natural void. If you don't know where your diverticulum is, ask your doctor for a copy of your ultrasound. Just know that it's a reverse image, so that if the diverticulum looks like it's on the left side it's really on the right. But again, it's not something you need to do but I just wanted to lay out the process in case you or anyone else with a diverticulum wants to experiment.

Jim

Hi Jim - great information. Maybe you should start a new thread on "CIC and Diverticula" just in case there are more men out there with a similar problem. Howard

Thanks Howard. I may just start a post on diverticulum's in general, so those that have them can share their experiences. Unfortunately, my guess is that a number of men that have them -- here or elsewhere -- are unaware, unless they have had a bladder kidney ultrasound and even then, that assumes that their urologist took the time to point it out.

Jim

Howard, it sounds like I have the same problem as you.  Your prostate is a super whopper!  Mine was 141 grams, and I thought that it was huge.  I also would have to go to the toilet every 30 minutes or so to empty a little urine.  Picture this:  I'm watching TV, got the urge, go to the toilet, empty a little urine, go back, watch TV, get the urge again in 30 minutes or around there, go to the toilet, let out a little more urine...this will go on for hours.  But now, with CIC, I empty once and that's it for hours, I'll be completely comfortable, and not having the urge to go to the toilet.

Very true and so important to all our lives. So maybe you can tell us all what we need to ask our uros next time we have ultrasounds as well as to smell something fishy when we CIC but still have frequency like in Franks' case.

Thanks Dennis. It is a wonderful feeling to be in control of our bladders with CIC. I would miss half a movie when we went to the theatre because I would go to bathroom every 30 minutes. It really annoyed people around me. But now I CIC before going to the movie and can watch it right through and even enjoy a drink too! Good luck. Howard

I think the movie stories are good ones to gauge our progress. Starting in my early forties, I probably left my seat 3-5 times per movie to visit the bathroom. With CIC, I could usually sit through the whole movie. Now, even though I only self cath several times a week, I still can usually sit through the whole movie as my bladder has been rehabbed over the past four years.

Jim

I know the feeling.  The same with me, before CIC. I once went with a friend of mine to the movie and he thought I had the runs, because I kept going to the bathroom! {smile } The other embarrassing experience was when I went to Boston, with my wife.  From Hawaii, it took around 12hours and I had to keep going to the restroom.   

hi Jim,,Just wanted to relate the last comment made by my URO.He said if i have surgery i would most likely be incontinent forever?

I don't like these answers.What is your opinion on this ?

frank,

Frank, You said you were going to email and ask him if the incontinence was temporary or permanent. And if permanent, why does he think that.

Jim

Frank, I was incontinent after a TURP, but worked away at exercises and in 12 months was perfectly dry and now can even pass a tap with running water. In 3 weeks am having Prostate removed and Surgeon advised on incontinence again, but not worried as I cured it once and will do again. It is interesting that research is being done that they believe some incontinence is not due to the procedures, but due to spinal anaesthetics.

David

David, Why are you having your prostate removed?Do you have prostate cancer?Did your doctor tell you you would be incontinent after Turp?Was the exercise kegals?

thanks,

frank,

Jim,I'm going to ask DR why he thinks i would be incontinent forever?

frank,

 

Frank, I am having my Prostate removed because of constant urine infections due to Prostatitis, also I had a TURP 2 years ago and it has now grown back to the same size, and they wanted to do another that I refused to have, as in my view I would need a TURP every 2 years for the rest of my life. When it grows back I start off self cathing due to being unable to clear urine from my bladder making infection worse until I cannot get the catheter in, and then it is a Foley catheter and all its joys.  I also have Prostate Cancer and was on Active Surveillance for 5 years and it does not seem to grow, but the Surgeon says he will never remove a healthy Prostate, but can justify it in my case.  The risks from a TURP are E/D and Incontinence, and in many cases neither are a problem, but I had both. Worked at Kegel exercises over 12 months and am perfectly dry, but E/D remains. Risks for prostate removal are same plus nerve damage, but I reckon I can recover again.   Can't wait for 1st May to get this done as only 3 weeks in from a new knee and have to take my time, so ideal to recover from both.

David

JIM,---THIS IS THE REPLY I GOT TO INCONTINENT FOREVER.----As explained previously by Dr. Turk, the chance is only 50% of incontinence. If it does happen, we can not 100% predict if it will be short term or forever. Every patient is different, and improvement of symptoms varies.

-Urology Nurses---THIS ANSWER IS DIFFERENT THEN THE FIRST STATEMENT  WHEN HE SAID I WOULD BE INCONTINENT FOR EVER? JIM WOULD YOU HAVE SURGERY DONE WITH THESE OPTIONS?

THANKS,

FRANK,

FRANK,

I don't want to be Debbie Downer, but the risks of incontinence and ED are WAY higher from prostate removal than TURP. I'm no fan of TURP, but if my choice was  between the two I'd opt for TURP every time.

It doesn't sound like the cancer is an issue right now, so there is no hurry. Why not look into FLA? It was designed to treat cancer and ended up being effective for BPH too. You'll probably have to have that done every couple of years too, but the recovery is way shorter and less intense. Virtually no chance of incontinence or ED. If it took you 12 months to get continent after TURP that does not bode well for your future after prostate removal. I'm not saying it will happen, but given your history, I think if you have your prostate removed you should be prepared to wear a diaper for the rest of your life. You might be fine with that - if it were me I'd rather have a procedure every couple of years. Diapers really suck.

HI, I want to wish you all the luck in the world.I was also thinking of having my prostate removed because i have to CIC 7,8.or even 9 times a day. I don't have cancer i believe . At my age 88 they said even if i do have cancer i won't die from this?There sure are a lot of different opinions .I have never mentioned having my prostate removed ,the thought does occur to me?

frank,

Frank - at your age, if you have your prostate removed your chances of incontinence is probably at least 80%. You could have Rezum done with no anesthesia. The chances of incontinence are WAY lower and the chances that you'll never have to deal with BPH or worrying about being able to self cath again are really good - assuming your bladder is in reasonable shape. Other than horrible pain or death, I don't know of anything prostate related that's worse than incontinence - I would do something that could cause that as a last resort only.

JIm, Thanks for the explaination ot diverticulum. Is a diverticulum caused by urine retention? I sent a message to Jersey Doc ,he never  answered?

frank, 

Frank,   It is a very individual thing and for me I have tried everything else, and this is what I want.   Take time and I hope you make the right choice as pain and misery are not what life is about.  Keep smiling and taking the tablets and thanks for your good wishes as that is worth a lot.

David

Hi Frank,

Yes, there seems to be a communication problem. My guess is that they are covering their a*s with the 50% incontinence figure as the literature suggests most of it will be temporary. I think it really comes down to a personal decision on how much risk you are willing to take for perhaps a 50% chance of being able to naturally void. Other than TURP and GL, the other two options would be Rezum and the new Aquablation. With Rezum, you should be evaluated by someone who does that procedure and/or try and get some advice here from Jersey Doc by posting in the Rezum thread when he is around. With Aquablation, I would wait a year or so until we have more results. Meanwhile, CIC is a great solution either short or long term.

Jim

Old Buzzard,   As they are running out of A/B to treat my urine infections and I am not prepared to live a life of catheters I think this is the right option for me. They now believe a lot of Incontinence is due to spinal injections so its a general anaesthetic for me and will see what happens. As we speak my urine is slowing down again, so 2 weeks for my op may well help me just now.

David

Prostate removal is almost never done with general anesthesia, thus incontinence is due to the procedure not spinal injections. And even that is more bro-science at this point than something medically accepted.

I wouldn't want to live a life with catheters either, but if my only choice was catheters or diapers, I would chose catheters every time. I don't think you've accurately assessed your likelihood of permanent incontinence if you have your prostate removed. Once that's done, there is no turning back from it.

I don't know how active your are, what activities you like ect. But I know that you can live a very active normal life with speedicaths. There are a lot of men on this forum that can attest to that. I only had to do if for a month, but I was able to run and lift weights on a CIC regimen. No so in a diaper. I urge you to read the accounts of men who have taken up CIC vs the ones who ended up incontinent for whatever reason.

I wish you the best of luck and sincerely hope things work out and I'm wrong. But I urge you to investigate and consider all other options before agreeing to one that will probably leave you with a wet diaper for the rest of your life. 

I've been doing CIC for 2 years now, 4 times  a day using Speedicaths and I've never missed a beat in my lifestyle. So I can attest to OB here. My uro is champing at the bit to take out my prostate but no way!!

Good luck. Howard

OB: But I urge you to investigate and consider all other options before agreeing to one that will probably leave you with a wet diaper for the rest of your life. 

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

OB and STM,

There are different types of incontinence after prostate removal and with the newer techniques, it is often temporary. Not trying to minimize the the risk, but the probability is not that you will be left with wet diapers for life.

Best thing is to really research the different approaches to prostadectomy and ask the right questions to the doctors. Another alternative might be TURP or HOLEP.

Given you history with UTIs, CIC sounds out, but maybe you would have better luck with a suprapubic, although it has it's own risk/discomfort profile.

Jim

Jim ,Thanks for that info,Today i start BP medicine .Has anyone on this forum take lisinopril BLOOD PRESSURE MEDICINE? I Don't like taking medicines> JIM HOW DO I POST ON THE REZUM THREAD? 

THNAKS

FRANK,

I previously sent you a link to the thread via private message.

Hi Jim

I'm not sure if this is the right place for this post but I thought I saw an earlier discussion about how to measure catheter voids without needing a third hand.

I just wanted to mention that I use what is called a Toilet Hat Specimen Collector which just sits in the toilet seat and I cath directly into it. It measures up to 1000ml and then I just record the value and empty the pee into the toilet. It only costs $2. and I buy it at the local drug store.

On the potato chip test, I have been off potato chips for a week and have seen a sizeable increase in my voids at night as well as my PVRs during the day. So tonight I started your experiment where I put 1/16 tsp of salt on my tongue and swallowed it. This is equivalent to the salt content of my 10 chips before bed, but a whole lot less tasteful! I'll report back.

Howard

JJ - Because it took him a year to get continent after his last procedure, I think his likelihood is much greater than the statistical average which I believe is 15% - with continent defined as no more than 2 pads per day (which isn't close to continent IMO) so the real number is probably in the 30% range. If he's only twice as likely than average because of his history - he's already in the more likely than not category. I think his URO is correct in what he was told. Also, the newer procedures don't decrease the chances of incontinence (or impotence), they shorten the surgical recovery time, not the side effect profile or the time from incontinence to continence.

IMO, prostate removal is rarely necessary and is done way too often. There are a lot of men who had it done needlessly who wear diapers or pads for the rest of their lives. And there are even more men who are impotent for life. The numbers on that are 50% if they spare both nerves, 40% if they spare one nerve. It typically takes 1-3 years to get whatever sexual function that you're left with back and  even the best results can't usually perform without a pill. As you know I am no fan of TURP, but the potential for problems with it are dramatically lower than with prostate removal. Everyone has to make their own decisions and weigh the risks - and everyone has their own tolerance for different handicaps. For me, I would try EVERYTHING before something that at best (doctor's estimate) would have a 50% chance of leaving me in a diaper.

Jim,  This is one of those decisions you have to take a gamble, basically they want another TURP, so as I had E/D & Incontinence from the last one, why not again I ask, they also wanted another biopsy and last time I had Sepsis so that is a no no for me. Again as the Prostate has grown back in 2 years what is to say I won't be in this position in another 2 years, plus then another biopsy. In the UK we are a bit restricted with what is on offer with the NHS in our areas. With the Prostate removed, no Cancer, no blocking of bladder, Prostatitis should / will be gone and with that urine infections. More concerned about pain after circumcision, and again can do the Pelvic Floor exercises and feel if I work hard it should be OK.  A friend had same procedure, walked out of hospital 1.5 days after being admitted for op, was on the bowling green 3 months later, had cath in after for 2 weeks and soon was dry, that is my incentive.

David

It's been very informative and helpful reading what you have to say about these issues, thank you very much.  Could you tell me something about the portable bladder scanner you mentioned?  I also have a diverticulum, but apparently it's located posterior/anterior, which makes surgery problematic, and short of standing on my head, almost impossible to empty.

Also, know of anyone with experience with dilatation?  That sounded pointless and painful, so I decided to forgo it and just do CIC.

Actually my diverticulum via ultrasound looks like it would only empty if I stood on my head and in fact I tried it!!! But in actuality, it does empty into the bladder when the bladder decompresses after a void, either a natural void or a CIC void. I have witnessed this real time with my bladder scanner during and right after natural voids. I would be curious to see a real time CIC but that would require a second person assisting me or an elaborate setup that I might try some day. But what I have seen is that even though the diverticulum looks impossible to entry with the catheter when the bladder is full, it presents a possible target for the catheter when the bladder is empty. And although I haven't been able to see it on the scanner (need another person) I'm pretty sure I have been able to cath out the diverticulum on occasion with a little effort.

As to surgery, the standard line is do not remove a diverticulum unless you remove the prostatic obstruction at the same time. To do so could potentially create even higher pressures making voiding even more difficult. But even if you were to have prostate surgeries, most urologists will leave he diverticum alone because it's a major operation and in most cases a divertilum won't do too much harm.

My scanner is a used Portascan Plus, an older 2-D version, that produces a real time ultrasound image similar to what you get with the larger ultrasound machines during a bladder/kidney study. In fact, my probe can do a kidney study but in a million years I'd never look there for fear of scaring myself to death not knowing what I'm really looking at! Laborie is the current distributor but previously it was distributed by Mediwatch and in Europe by Bard.

I specifically got a real time unit because of the diverticulum as the more common 3D units found in doctor offices use a computer alogorithm to find and estimate bladder volume and therefore might mistake the diverticulum for the bladder. Frankly, it's very disappointing to see these simplified 3D machines (mostly expensive Verathon units) in urologist's office when a uro could do a much better exam with a real time unit like mine.

Let me know here or via PM if you want more info on these machines as I have researched them pretty well.

Why are you thinking about dilation? Do you have stricture?

Jim

Thanks for all the info, Jim.  Having a scanner on hand must be rather convenient.

Yes, I have strictures; BHP diagnosed, TURP in 2016, followed by BNI ten months later, followed by another BNI in December '17.  Symptoms have returned and the uro gives me the impression that there's so much scar tissue up in the bladder neck that short of urethroplasty their options are limited.  Dilation has been suggested but like I said that sounded painful and basically pointless--statistically the results are short-term at best.

So i'm back to CIC 3x day.  I can live with this, even though I can't seem to get the cath fully up into the bladder anymore-it definitely hits a stopping point, which is also where flow begins. This is possibly the internal sphincter?  Scanner would be useful here...

What size FR do you use? You could try going up a size (or even more) for DIY stricture dilation. Don't need to do this every time. Yes, right before you enter the bladder you hit the internal sphincter. While I've watched the natural voiding process with the scanner real time -- very interesting and educational esp with my diverticulum -- I've never watched a CIC on the scanner real time. This would require either a helper or a bit of time put into a setup probably using a device sold by a German cath maker called the "third hand". So one hand would be on the catheter, another on the ultrasound probe, and the "third hand" holding your penis taught. One day I should give it ago!

It is very convenient and I used it a lot the first six months, both to double check my PVRs and also to learn how the voiding and CIC work with the diverticulum. Invaluable because no uro will go through the time and trouble to do this short of video urodynamics and that would only be for one point in time. But now, from using the scanner previously, I can pretty much guess exactly how much I'm holding on the days I don't CIC. Don't think I've used the scanner for several months now but it's there when I need it. For me a good investment.

Jim

Hi Jim - does your scanner record video so you could upload a movie of what you describe?

Thanks for your reply, Jim. You seem very well informed about all this, so here's another question:  Do you know of a good source for more detailed information about the basic anatomy involved here?  I would like to know more about what happens exactly when they do an trans-urethral procedure.  Presumable as they core out the inside of the prostate they destroy the wall of the urethra itself (inside the prostate), is that right?  So the urine is just flowing through the open space of the hollow prostate? And then the idea is it just heals up and leaves enough room for normal flow?  I was unable to ask the uro who did my procedures these questions, and now he's still in Paris and i'm in Beijing-but that's another story. 

I was interested that you said you could pretty well guess how much you're holding.  I gather one gets a sense of that after a while.

Stan,

You might want to check the Rezum site and/or YouTube videos of the procedure. We also have a doctor from New Jersey (JerseyUro) who posts often in the Rezum forum. He coud probably explain he procedure better than me. I'll just say that trans urehral procedures have been around for a long time and were used before Rezum.

When I said I could "guess what I'm holding" it was not based soley on "feel" but the fact that I have a home bladder scanner. After scanning my bladder a number of times, at different times of the day, soon enough I was able to associate how I felt and other variables with prosate volume. So while in the beginning I used the scanner frequently, now I hardly ever use it, maybe once every few months as a reality check. Without the scanner, I would have had to rely on the scan at my uro's office which is only gives retention at one point in time.This is probably enough in most instances but I was experimenting by pushing my self catherzation schedule to the limits and I didn't want to overstretch my bladder in the proces. The scanner kept me honest  (and safe) by letting me know how much I was holding during those times I was not self cathing.

Jim

TYPO; I meant "bladder volume" not "Prosate Volume". (second sentence, second paragraph).