Life On catheter

Hi Dai,

Actually, urodynmics is a suite of different tests and not just one test or protocol. The comments I and others made should be seen in the context as described. As to checking retention, did your urologist bas your "1000ml" figure on a portable rbladder scan in his office without asking you to drink additional fluids? Or, was it based on a larger ultrasound study where they ask you to drink I believe around 32 oz (945ml) of fluid, or more.

Because if it's the latter, many of us with compromised bladders cannot efficiently void large volumes of fluid when the bladder is filled faster and with more volume than under normal daily conditions. This can then result in a significantly falsely elevated post volume residual. In other words, just because the ultrasound shows you with 1000ml left in your bladder doesn't mean you actually carry that much around on a daily basis. Unfortunately, many doctors (and patients) accept these inflated numbers as gospel and I would venture to say thousands of unecessary operations are performed every year based on this kind of testing. 

Personally, if I drink normal amounts of fluid, my post volume residual is under 150ml, and much of the time under 50ml. However, if I fluid load in a similar fashion to the instructions for an ultrasound, not only does my retention go up but it can put me into acute retention. Does this mean I have a retention problem and need an operation? Not at all. It just means I have to be careful not to chug-a-lug large quanties of fluid in a short period of time. 

Jim

Just want to reiterte at Jim said here. If I limit my fluid to 500ml over 6 hours then I am fine but if I take in a liter at one time I cannot pee. This is what they did to me at the urodynamics test and tried to cath me with the nuse from H... and admit me to the hospital. But after a quick run around the building for 10 minutes I peed fine. My PVR is still around 300ml but I am new to CIC. Neil

Neil,

As I've discussed before I also lock up from time to time when my bladder gets too full, say over 500ml. That could be from too much fluid over too short a period of time and/or excessive kidney unloading at night or even after an afternoon nap. And like yourself exercise can sometimes unlock things although I've never tried running, just walking around the room, although at one point I decided just easier to cath than pace the livingroom at 3am! Lately it's been better and I've only really had to cath twice in the last six weeks or so even without being too careful about how much water I drank. Just a hunch but it might be because I haven't been drinking much beer lately so the thought is that beer being a diuretic might unload the kidneys faster and therefore fill up the bladder faster.

Jim

Jim, Old Buzzard, Neil, Frank - - The REZUM  procedure was successful per my URO Doc at my appointment this morning......The Foley was removed and I was able to pass a VOID Test...His Nurse taught me how to Self Cath....He states I should be able to pee normally within afew days and in the meantime  to Self Cath 1-2 times per day......He set me up for a follow-up appointment in 3 months.....Hopefully, my prostate BPH and Bladder Muscle problems havre been resolved and I'll be able to pee as normal and regain my life after 4 months....I'll continue to let you know my progress until I'm well again....Many Thanks to All of you!...

I'm glad this nightmare is finally over for you. Don't be discouraged if your path to being cath free is a bit more rocky than promised - there really is no way to know and your bladder has been dormant and unexcercised for quite awhile.

As for how often to self cath - first see how much you can pee on your own. Then try the cath and see how much is left. If you're consistantly at less than 100, you don't need the cath. More than that, its best to pee as much as you can on your own and empty the rest via cathing.

Good luck, keep us in the loop!

Hi Randy,

 Glad things went well! Hopefully you will not need the cath soon, but good to know how to do it in case. As mentioned by "oldbuzzard" be patient with your bladder recovery in case things don't snap back right away.

One of the advantages of self cathing is that you will be able to monitor your post void residual without running to the doctor or the hospital for an ultrasound. 

Again, as mentioned, if you are consistently cathing less than 100ml at different times of the day, that means you can probably stop. However, if you are cathing out more, probably best to continue a bit. Also, if you cath out more than 400ml, not only should you continue but you should increase the frequency of your cathing so that you cath less than 400ml. Even better is to adjust the frequency so that the total volume in your bladder (natural urination plus catherized volume) doesn't exceed 400ml. 

Jim

Hi Jim and others, I have been reading these exchanges with great interest and it is very relevant to me. I have posted on these forums before but the problem is there must be 100's of threads and there is no indexing that i can see so its very difficult to keep a handle on and re- access the information that we have read previously. Or is this just me being thick? My situation is that I went into acute retention out of the blue after a heavy night's drinking. After US scans and DRE I was diagnosed with BPH, and to cut a long story I had a PAE done at Oxford in the UK. The thing is I had already made a good recovery to "normal" urinary fucntion on my own (used SAW PAlmetto and Stinging Nettle) and to be honest there was only a very minimal improvement after the PAE. HOWever, some 8 months after the PAE I went into AUR once again after a heavy nights drinking on my birthday, a lot quite quickly, say 6 pints of beer in 3 or 4 hours or so. Although during the previous 8 months I have gone out and done just the same drinking with no ill effect!  

It has to be said for the last few months I have noticed my flow decrease and my frequency of going increased! So there needs to be a combination of the drinking large amounts of alchohol and being predisposed to retention somehow. My question is what is going on? maybe its a bladder problem; I have now had 4 episodes in total, 3 caused by lots of beer!

Or is it my prostate flaring up and pressing on my urethra. I'd be interested to know what people think? Amount drained from bladder was 1.3L, 900ml, 1000ml and 900ml respectively. My prostate is enlarged was 82g, reduced by 20% after PAE.

Sounds like "what is going on" is a normal progression of things. You had bph and were only temporarily helped by the PAE. Now BPH now seems to be progressing which is normal. Going into acute urinary retention (AUR) after drinking large amounts of fluid/beer is symptomatic of that situation. Of course imaging will confirm, but it does sound like your prostate is pushing on the urethra, probably has been for some time, which adds pressure to the system and over time can result in a flaccid (stretched) bladder which cannot contract properly and therefore the dribbles and retention and in your case AUR because the flaccid bladder just can't handle very large volumes. 

The AUR caused by drinking large quanties of beer can be helped by simply drinking less beer! If that is not an option, learn to self cath for those occasions or be prepared to get hooked up to a Foley each time. 

As to the other symptons, you really have to figure out if your BPH warrants more than watch n' wait. If it does then the options are meds, an operation or procedure or learn how to self cath. 

Lots of info on all of the above here, but it IS very difficult to get through it all because IMO the threads are organized in a non-intuitive way. I hardly even know what thread I'm in and if it wasn't for the email alerts I would be totally lost! Most forums are organized in chronlogical order within a single thread, but here the organization is different because the site allows you to reply to either the original poster or another poster. Personally don't like it but otherwise a great site.

Jim

It sounds like the PAE wasn't all that effective - normal prostates are 30g. You can either drink less beer, self cath when you do, or look into another procedure. Rezum or Urolift are good, non invasive options that work in the vast majority of cases and you're probably a good candidate for either.

Hi Jezzaman,

Please excuse my candor, but something that you didn't touch on that I think needs to be said here is the "elephant in the room":  no matter what other measures you take, the first and best thing you can do to improve your situation is to stop drinking.  If you don't do that you are always going to have the problem - to one degree or another.  I've been told by several health professionals that drinking alcohol is the absolute worst thing you can do for this problem.

Best of luck to you! 

i'm going to basically disagree. Short term it will probably solve your problem, but lifestyle adjustments to deal with BPH is a slippery slope that will leave you living your life around your prostate and the bathroom. You can: stop drinking alcohol, stop drinking caffeine, stop eating spicy foods, not eat or drink after 8PM, take Flomax and not ejaculate, double void every time you go to the bathroom, never wait too long to pee so you don't lock up and the list goes on and on. Nest thing you know, you can't do half of the things you like and the firs thing you do anywhere you go is look for the bathroom.

You still have an enlarged prostate and I strongly recommend getting one of the less invasive procedures (Urolift or Rezum - you could also get the PAE redone, but I'd recommend one of the others because PAE didnt' work so well for you) and seeing if it can improve things enough so that you can live your life without thinking about your prostate or the bathroom.

Hi Buzzard,

yes I kind of feel the same, if I give up all of the above then I may as well buy a pipe and slippers and get in lots of films; enough to stay ay home for the next 20 years or so and wait to die! No thats not me Im afraid.

I want to deal with the causes, tempted to try the PAE again if they will repeat, and maybe try Finasteride to keep Prostate from regrowing.

Does anyone have much info on Finasteride and Dutasteride etc??

Thanks jim. Interesting points re the bladder, If I normally had 0 symptoms of BPH then I would suspect purely my bladder, but I have to concede it probably is the Prostate pinching the urethra. Perhaps you can tell me which are the easiest caths to start using for CIC. I have tried 14F Speedicath lubed that come in the green tubes with the screw off lids, but could not manage to get it in the last inch or so past the prostate when I was last in retention. I wish i could do it though!.

And yes the forum could be designed better!

Jezzaman,

You said before that your urinary function was more or less "normal" prior to the PAE except for the one instance of AUR after heavy drinking. Keep in mind that even if you have another procedure, there is no guarantee that you still won't go into AUR after a night of heavy beer drinking. That's because AUR in that instance is not just a prostate issue, but also a bladder issue. 

Also want to point out that I haven't  had to make any of the lifestyle compromises mentioned previously, and I have still not had a procedure. Just bladder rehab through self cathing which I seem to be doing less and less. This month only two times. 

Do you know your IPSS score now? If it's "mild" or borderline "moderate" and if you're OK with how you function now, I would watch n' wait rather than pull the trigger today because you are worried about what will develop with your prostate tomorrow. PAE and Urololift are pretty new. ReZum I believe is less than a year old. All these procedures will probably be refined in the next year or two and newer, possibly better procedures may come out. On the other hand, if your symptons today are interferring with your life, then it is time to get more agressive be it with drugs, a procedure, or with self cathing which I chose. 

Jim

So, if you're OK with things now, consider waiting some more.

Speedicath's don't come in a tube with a screw off lid. That sounds like you're using Coloplast's compact model. Not surprised you're having problems with the compact. I did. For one thing it's a couple of inches shorte than the Speedicath and I could barely get it past the prostate into the bladder. Second, it doesn't come with a coude tip, which should make it easier to navigate around the prostate. Third, it's not really a 14F because it telescopes larger toward the front. 

What you want to try first are Coloplast's Speedicath FR14 with Coude Tip. They come in a green plastic/foil packet that you peel apart. No screw off lid. 

I have a feeling that you will then have no problems. But if you do, there are a few techniques we can talk about for navigating the prostate and you can also experiment with another size. But first get rid of those compacts, given what you describe.

Jim

DO NOT TAKE FINASTERIDE!!!! There is a pretty good chance it will make you impotent, it takes a long time to work, only works as long as you take it and some people never regain sexual function after they stop taking it.

As i said, meds are a temporary solution at best and FInasteride is one you don't want to touch. You ay have bladder issues along with BPH (I do), but if BPH is a sginificant part of the problem, dealing with it through one of the less invasive procedures seems like a logical next step.

The net net for me is that REzum helped a lot - I still have problems if I drink more than a certain amount (its the alcohol, not beer per se) and may always have to put a portable cath in my pocket if I want to drink a lot. But I'm much better and it was worth it for sure. Again, I'd look at Rezum or Urolift just because PAE didn't work all that well, but I could bbe wrong.

Good luck and let us know how you do

THanks Jim I think that is good advice. And yes I think that the AUR in my case is due to bladder overload, as I am voiding ok, (albeit slowish stream) when not boozing to excess. I will work out my IPSS score again for reference.

Just looked closer at one and they are Coloplast Speedicath Compact CH/mm 12/4.0 18/6.0   thats what it says on the side. Green Tube screw lid.

I will see if I can get some of the ones you suggest.

Thanks for the tip,if you will excuse the pun!

 

Did you get my post on Speedicath's? I really think you're using the wrong catheters given what you've said.

Jim

THanks OldBuzzard, (love the handle)

CAn you describe your experiences with Rezum, or send me a link if you have already.  MAny thanks.

 

I find the ones you're using much better in every way except I agree with JimJames that they just barely are long enough.  So if you absolutely can't get it past the prostate then maybe you will need to try another.

I didn't realize that the Compacts were also called "Speedicath". But it's still the wrong catheter for you based on both how you described your experience with them and my own experience. Coloplast will send you samples just call them. I would ask for as many FR14's with Coude tip as they will send you, and then ask for a couple of FR12's and a couple of FR16's.

You start with the FR14's but if you run into a problem you could try the 16's or the 12's. The rule of thumb is to use the smallest size that works but I think you will find the 14 easier to work with initially than the 12. You can then try dropping down to the 12 later on. 

Here are the Coloplast Product codes:

FR14 Coude: 28494

FR12 Coude: 28492

FR16 Coude: 28496

Jim

You should call Coloplast and give them feedback regarding the length. I have. The more calls they get the more likely they are to offer a longer size. Also, sounds like you don't need the Coude tip as the Compacts don't have one. I "stuck" myself once trying the Compacts and that was enough for me! With the Coude, you can't really stick your prostate as the bent end works around it.

The other issue with the Compact, as long as it's being discussed, is that it' harder to get insurance clearance, at least with Medicare. I believe they require documentation of three distinct/different UTI's within six months or a year. That's why they only offer them with the bags in the States so they can sell them as a "closed" system and therefore charge the insurance companies more as the manf costs are higher than with the regular Speedicaths. 

I'm hoping that they will eventually come out with a longer Coude model because they are definitely easier to carry them around with you.

Jim

I agree they'd be even better if they were just one inch longer.  I will call them.  I've been meaning to anyway to find out where I might be able to donate the bags - as I don't need them.

Hi Jim - I have a strange  question for you and the others. I use the Speedicath 14 coudes once a day now. Do you think the length of the penis affects how easy it is to insert the catheter? My "normal" length is only 2 inches and I do find it difficult to stretch out the penis before inserting the catheter. Do you think being semi-erect at 4 or 5 inches would make it easier to insert the catheter since there would the be a straight path through the urethra to thr prostate and I wouldn't have to pull the penis out? I haven't been brave enough to try that yet? Thanks. Neil 

The technique I use is to gently pull the penis out toward the ceiling with my left hand and then drop the catheter in with my right hand only touching the plastic funnel. The coude tip tends to "catch" about a 1/8-1/4" into the urethra which I hold open with the thumb and fore finger of my left hand. Once it catches, I then start pushing it in with the right hand. I also make sure that my left hand is not pinching the urethra making the canal smaller, so the key is to relax it. As the catheter starts going in I am still pulling the penis out gently to straighten the canal but gradually changing the angle so by the time it gets to the prostate the penis is now facing the opposite wall as opposed to being straight up. I've done it when my penis is totally flaccid and also when semi-flacid, as like with a partial erection you might get in the morning or when awakened at night. Haven't noticed a difference. You could also try a smaller sized 12F which is what I now use. Really have to experiment. Really got to experiment. Some have better luck sitting down for example. Key I think is that whatever you do, do it gently, very gently.

Jim

Thanks Jim - I always learn something new from you and appreciate your patience. I had my 3T-MRI yesterday so it will be interesting to hear the results. Neil

Hi again Jim,

I have a penile implant, so I can "pump it up" exactly as much as I want at any time. So how erect should it be for self cath?

Neal

Had it done in mid March. Hurt like hell, but each spray was only 9 seconds - sprays in all. 3 Hurt, 1 didn't, one made me scream. Self cathed for a bit over 2 weeks (was told it would only be a day or two) and it was about 4 weeks before I was off the cath or going every 45 minutes or so. My doc thought my bladder might have been shocked into non function and prescribed Myrbetriq to calm it down. It seemed to work and after about a month I stopped taking it. About week 6 I realized I was probably a bit better than when I went in.

I continued to improve and realized that I had an open urethra but a less than fully functional bladder. That part is still getting better slowly and I sometimes have to force the last 1/4 of the pee out or pump it out by squeezing under my scrotum.

Bottom line is that I'm not perfect, but way better than I was. I used to get up 2-4 times a night and now its 1-2 and more and more often its 1. Lots of nights I go 5 hours without getting up and its been over 15 years since it was like that. I don't worry that if I have to hold it that I'll lock up and I have gone as long as 4 hours without peeing during the day - I can't rememer the last time I could do that. I still have problems when I have more than a couple of drinks - clearly alcohol puts my already lazy bladder to sleep. I can dutifully pump it out or carry a cath if I decide to drink more than 2 or 3 drinks. I'm hoping that as my bladder improves, the alcohol reaction will be less severe. Nothing else bothers me - caffeine, spicy food are no problem at all. I love iced tea and am enjoying it with reckeless abandon for the first time in years. 

It was tough going (literally) at the beginning - but now that more of these have been done I think they know that while 2 weeks without being able to pee is not the normal reaction, its not unheard of and I would have worried a lot less if I had known that. At the time, I took longer getting off the cath than anyone who had ever had the procedure.

Despite the problems the first 5 weeks or so, it was worth it, especially if the results are reasonably durable and last awhile.

 

Thanks again Jim.

I will call them  next week.

Jeremy

Hi Neal - are you still palnning a second PAE at UNC next week? Good luck to you. Neil

Hi NEal,

Forgive me if have missed your story but can you tell us?

I am considering a second PAE if I can and if it might work.

The first I had in February this year may not have worked as my symtoms seem to be returning.

regards

Jeremy

Probably best just to experiment and see what works best. Probably start with the most flaccid and then work up in increments. I assume that the implant probably straightens the urethra out by itself so the "pulling" may not be as necessary. 

Jim

Jeremy,

When you get the Speedcaths with the Coude (bent) Tip, just remember that the bent tip must be oriented correctly when you insert it in the urethra. There should be photos on line or on YouTube. But in words, if you're cathing standing up, the bend at the end of the tube should be toward you even though intuitively it seems like it should be the other way around. You will also notice a little guide bump on the plastic funnel. So, if you gently pull your penis straight up toward the ceiling, the guide bump should be facing your belly when the catheter is inserted into the urethra.

Jim

Hi Jezzaman

I had a PAE about 14 weeks ago at UNC but have had no benefit from it. I am considering a second one next year with Dr.Bagla but first want to committ to self cathing and see if I can get off the drugs. Nealpros I think was planning a second PAE at UNC soon but am not sure.

Take care

Neil

Yes Neil, I'm planning to have it this Thursday, November 3. I'll let everyone know how it went, when I can.

I asked Dr. Isaacson why this one should work better than the last one. He said that they used to embolise right at the prostate, and they found that new arteries were growing from just above the embolism, around it, and right back into the prostate, negating the whole thing. Now they are embolising the artery a little further from the prostate to keep that from happening. Also,he may do more arteries. They used to do just the 2 main ones. We'll see how it works out.

Wish me luck....

Neal

Hi Jessaman,

Please see my answer to Neil, just above. I had my first PAE at UNC last December 2015. Like you it seemed to be improving a bit, then went to hell. I'm now back to peeing once every 1 1/2 hours or so.

Neal

Hi Jimjames,

Thanks for the information. I'll keep it in mind. I don't have to self cath yet, but it's close, and who knows what the new PAE might bring. You're a big help to us.

Neal

Hi Neal  - I do wish you all the best. I had my MRI last week but Issacson does not respond. I will send the results to Bagla for comment.

Do you still have to pay the  full amount?

Good luck! Have a piece of strawberry cake at Nantucket Grill!

Neil

Hi Jezzaman.  I had a PAE but it only helped about 5% (i think because i have an enlarged median lobe).  do you have an enlarged median lobe?

Best of luck!

Hi Neil.  Do you have an enlarged median lobe.  PAE's don't seem to work nearly as well for those of us that do.

Old Buzzard - We both had REZUM's and our experiences are similar. I had my REZUM in mid-August and it took 2 months before I could passa Trial Void and be taken-off the Foley Direct Catheter (finally last Thursday)...I am Voiding 3 times per night and ~ 3 times throughout the day...My retention appears to be Less Than 1ml....I've left a message for my Doc's nurse to see if I can Stop Cathing and Stop Flomax. ..I have a little dribbling just before I start a Void and I barely feel when I need to Void vs. previously...My nerve doesn't create the urgency so, if I'm not careful, I can mess myself up...I hope these issues clear-up soon and everything returns to normsal..Regardless, I feel the REZUM was a success, there was little pain, recovery was quick except for my Retention which appears to have been corrected, and my Stretched Bladder Muscle seems to have functioning OK, but could be stronger.......I feel I can recommend the REZUM to others and normally, they might be able to resume peeing after just a few days.....I really appreciate your and Jim James help and wish you and everyone else on this forum the Very Best!...

Jim, What's the Rule of Thumb for Self Cathing to check Retention after the experience I've had?....

The logical order would be to do a trial off Flomax, then check your residuals via self cathing. If the residuals stay under 100 then stop cathing and monitor your bladder periodically via bladder scan at your doc's office.

On the other hand, if your residuals are over 100, then you have choices. Either go back to the Flomax, try another drug alternative like Daily Cialis, or stay off drugs and go back on a cath schedule. If you do have to go back on a cath schedule it may only be temporary as bladders can continue to rehabilitate far longer than most doc's think. At least mine did.

-- Jim 

I may have covered your question in my last post but in general this is how you figure out cath frequency. 

First urinate naturally (if you can) into a plastic beaker marked in ounces and/or ml or cc. Let's call this natural volume (NV). Then you self cath and measure the volume. Let's call this cath volume (CV).Then add the two volumes and you get total bladder volume (TV). (If you can't urinate naturally then CV would equal TV).

Convention 1 is that if CV is over 400ml, you increase the frequency of cathing. Convention 2, what I did, is that if TV is over 400m, you increase the frequency of cathing. Convention 2 is more agressive and IMO makes more sense because it takes into account what the bladder is actually holding.

Cathing can usually be stopped when CV is consistently under 100, although I'm sure many people carry around more residual than 100ml without ill effects. Here is where you have to look at the entire picture, including IPSS score and monitoring by your doc.

Jim

 

OK, Thanks...

Makes a lot of sense.....Thanks...

I find that a curious explanation. Early on I asked Isaacson if PAEs were similar to the Gat/Goren which embolized (sclerotized) veins. IN that procedure Gat waits a few minutes after sealing the veins because collateral veins always open up nearby so he waits to seal them. Isaacson said that arteries are much thicker than veins so secondary branches do not open up as a bypass. I did send him pictures to the contrary. Maybe it just takes longer but you would think as an IR guy doing experimental procedures he would want pictures of the arteries at regular intervals after the PAE! But I still went ahead and did it with him and now I read your post here. Isaacson would never speak with me after the PAE to discuss why it failed. It is so frustrating! I pray your second attempt works for you. Neil

Will do!

Neal

I forgot to answer your question. Yes, I still have to pay the whole amount, again .

Neal

That's all very odd. I've never had any problem speaking with him.

It's my understanding that he said that the artery grew around the embolism to the prostate, but perhaps I misunderstood.

I'll let everyone know how it goes.

Neal

I think I asked him too many questions and told him I read all his papers. Maybe it put him off that I was a know-it-all but he never explained anything to me. Today my 3T-MRI showed suspicious regions with a likelihood of prostate cancer. I sent the report to Isaacson at noon for comment and still have not heard back. My uro needs to know if this is typical of MRIs shortly after PAES - I once wrote you a while ago asking you if your MRI showed anything suspicous just cause I worry about all these tests. What a quagmire!!  All the best to you. Neil

I answered your earlier question, but it either got lost, or you may have missed it. My MRI showed "indications of prostititus". Dr Isaacson may have been busy. He may answer you tomorrow.

Neal

Randy,

What are your total void volumes when you have to get up at night? Have you gone off the Flomax yet and then checked your residuals?

Jim

We did. It was great.

Neal

My URO Doc will be checking my Post Residual in ~ 2 weeks....In the meantime, he wants me to continue Flomax...I've Stop Self Cathing after ~ 1 week which my URO Doc predicted I could do...I have ~ 6-7 urine voids per 24 hours. Normally, 3+ at night or early morning (5AM-7AM), then 3+ scattered during the day...My residual is ~ 100ml per the bag I have..As I told Old Buzzard, I'm having some leakage at night when I'm sleeping, experience some dribbles during the day, and, at times, have No Warning of a Sudden Urgency to Go and can barely make it to a bathroom or, I don't and have an accident......I want to get back to PT work teaching, but I can't until I can control my bladder....Also, I've started experiencing a new medical problem, constipation, during the past 2 weeks...I'm trying to deal with both these problems at the same time...

Hi Randy,

Hopefully your side effects will get better. Wondering if the Flomax is actually contributing to the dribbling and urgency? In any event, as long as your PVR remains under 100ml, you owe it to yourself to get off the Flomax. Sometimes you have to gently tell the doc as opposed to asking. 

Meanwhile, in terms of dealing with lack of bladder control and work, you might consider either a condom catheter or even adult diapers. Neither ideal but I tested out both in the past and they both work OK. 

The adult diaper speaks for itself, but a lot of people aren't familiar with the condom catheter. As the name suggests, no plumbing inside the urethera like a Foley, just a condom like piece of rubber that fits over the penis which has a tube running into a small bag. So, if you got to go before you find a place to go, the urine flows into the small bag which you can then later empty and re-use. Easy to hide under pants. You can google "condom catheter" or even "Stadium Pal" as many people with normal bladder function use these in situations where bathrooms are not nearby.

Jim

I think that this will probably resolve over time. I had the same kind of urgency you describe and it went away. But I had a couple of close calls myself.

As  has been suggested, I don't think your Urologist has done you any favors with (As far as I know) the longest post Rezum catheterization on record. That's probably why you're dribbling an leaking. Your bladder isn't used to working and it will probably take some time to get it back to fully normal function.

I also think its time to find a new Urologist. He is obviously in uncharted territory (at least for him) and he's guessed wrong with some pretty bad repercussions for you. I don't know where you live, but finding a PT that really gets the bladder control stuff is critical for you now. And your doc has to agree to giving you a prescription for it. Your muscles and bladder aren't holding things as tightly as the should be and that's why you'r dribbling and leaking. As I mentioned, the right PT will have biofeedback equipment that will illustrate exactly where you are and need to be regarding muscle control while you experiment, then you get used to what's right and can check yourself. It will become second nature and then you won't have to worry about it anymore.

Good luck!!

 

Good Suggestions!...Thanks for following-up!....Is there some way I can repay you and Old Buzzard?....FYI - I was becoming distraught when I first joined the forum...URO Doc's seemed only interested in performing TURPS and had little regard for their patient...On the forum, I learned about PAE, REZUM, and other less invasive BPH treatments with fewer complications, less pain, and quick recoveries...I seem to be improving and, hopefully, will be normal in a few more weeks..Old Buzzard had a REZUM before me and seems to have experienced most of what I've experienced and told me to allow time and retrain my bladder,  because my bladder muscle was dormant for ~ 4 months, because I couldn't pass a Trial Void and the URO Docs kept me on a Foley....The URO Docs had told me that, if I couldn't pass a Trial Void, the only treatment option they would offer would be a TURP or I would have to stay on the Foley or Self Cath indefinitely...Lucky enough, I finally passed a Trial Void after many attempts and failures...I feel the REZUM was a success and has cured the BPH for some time...I don't seem to have a Urinary Retention Problem anymore and my bladder muscle is strong enough for the present....I'm ~ 100% Better than I was...I hope my remaining problems will disappear as Old Buzzard has experienced and I's able to finally Regain My Life....Once again, I really appreciate you and Old Buzzard's assistance, encouragement, support, etc...Let me know if I can help you....Randy...

The best repayment to me is the post where you say you went back to teaching, things are fine and you actually have stopped thinking about retention, bladders, foleys, diapers, pads and urologists.

You'll get there one day before too long - quicker with PT but you'll be fine in time. Good luck and find a new doctor!!!

Thanks for your follow-up and suggestions...It seems a Bladder PT Retraining will help....I'll try to get a prescription from my URO Doc for that..Once again, I really appreciate your help, encouragement, and support..I was becoming despondent before you and Jim started helping. Thanks so much!...How can I repay you?...Please let me know..

Thanks so much!..

Repay me by lurking on this forum after your life goes back to normal. There are lots of guys who can't pee being treated by misguided urologists who just want to chop them up for a nice payday.

We won't be the last Rezum patients who barely made it to the bathroom. There will be more oldbuzzards and Randy's who will need our guidance, encouragement and support. We can all pay each other back by jumping in when we can and helping them out. I can't imagine how many people have avoided horrible outcomes just because of JimJames and his CiC wisdom.

Hi Randy,

Glad I could be of some assistance but do try and get off that Flomax for a good trial run even if it means telling your urologist instead of asking him! And again, the Flomax may be making the described issues worse by relaxing your sphichter muscles too much. In fact, just checked it out and turns out  that Alpha Blockers are one of the drug classes that can cause incontinence and Flomax is an Alpha Blocker! 

The reason I asked you before what were your total volumes (natural void plus catherized void) at night was because if they were normal then I don't think the problem is necessarily weak pelvic floor caused by your Foley experience but rather simply nocturnia (night time urination) which is pretty common as we age. So in other words if your bladder is full it's normal you will get up at night to urinate.  On the other hand, if you're getting up at night and very little is coming out, that is another story.

Jim

Old Buzzard,

Thanks for the nice words and also thanks for being here and continually supporting CIC as well as pointing people toward less invasive procedures that can often do the same job without much of the collateral damage. The Hipppocratic oath is "First do no harm" and unfortunately too many docs do inflict harm by getting overly agressive when there are other ways.

Jim

 

Jim, based on my use of the Bag, it looks like I'm voiding 150-200ml 1-3 times at night...Per past URO Tests, my Total Volume at the time was ~ 600ml....I read that if you decided to Stop Flomax, you needed to Stop Gradually..I'm taking one .4mg capsule per day...They say reduce that to every other day, then, 3 times per week, then, once per week, etc..Have you Read that?...I had Stopped Flomax once before Cold Turkey and did not have any side affects...FYI, if I remember correctly - When I had the "Bed Bag" , I generally voided ~ 300-400ml over night and, then, 200ml-300ml during the day...It seems that I'm continuing that pattern...I'll push to stop the Flomax...Thanks for everything...

I totally agree and the two of you have been Great!...Thanks a Million!..

Randy,

I also stopped cold turkey a couple of times and did not have any side effects. How long have you been taking it? .4mg is the starting dose so unless you've been taking it for a long period of time I don't see what the problem would be going cold turkey. Of course it's possible you might start to retain urine again, but you have catheters on hand to monitor and/or correct that situation should it arise. That said, I don't see any harm going to once every other day for a week or so, but seems overkill beyond that unless your doctor gives you a good reason. Hopefully, getting off the Flomax, and/or some time for healing, will cut down on your urge incontience, dribbling and night time bathroom trips. Then there's also the pelvic floor exercises and biofeedback therapy suggested by "Oldbuzzard". Things are still healing for you but the good news is that your bladder seems to be quite elastic given your low residuals which hopefully will be maintained without the Flomax.

Jim

 

Ok thanks Jim,

I must conquer this!

 

hi

Not as far as i know!

But I am pretty sure the PAE has not worked. I have had 2 eposides of AUR since the procedure back in Feb this year. Albeit after drinking a good few pints of real ale!

Hi Neil

I hope it went well. How are you feeling?

I was very interested in your post re the rational behind doing a second PAE. Particularly re the modified approach to embolisation.I would like to sent this information to my radiologist in the UK. Is there anywhere where this information is published so i could access it?

regards

Jeremy

probably a bit late to mention  but I have been taking saw palmetto and Stinging nettle roor extract for a week consistently and appear to be turning a corner. I wonder if this is what improved my symptoms before and not the PAE!

Thanks and best of luck!

I don't know about any publication about this type of embolisation. My guess is that it was just common sense on the part of the IR, since there are very few IRs doing PAE.

As for the stinging nettle, abdominal saw palmetto, the SP has had reports that it doesn't work, but I really don't know. My guess is that like the stuff you get from the urologist, they might work for a few months, but again,I have little experience with them. There are others on the forum who do, and hopefully,they will add their experiences here.

Neal

Abdominal, should be "about ".

Neal