Self Catherization. An alternative to Turp, Greenlight, HoLEP...?
Posted , 82 users are following.
Since I posted a thread about self-catherization -- more formally called Clean Intermittent Catherization (CIC) -- there have been a few different discussions on the topic in various threads. I thought it might make sense to bring those discussions over to a dedicated thread. With that in mind, I will summarize and/or copy and paste some of what was said before into this thread for better continuity.
My story in a nutshell. 68 years old with BPH probably since my late 20’s. Watch n’Wait strategy with on-and-off trials of Tamsulosin (Flomax) with poor results. Symptoms were the normal retention issues resulting in frequent urination with incomplete emptying, urgency, and having to go to the bathroom at night in increasing frequencies. Near the end, two or three uti’s per year often accompanied by gross hematuria (bleeding).
Two years ago things got significantly worse and I couldn’t urinate on my own without physically pushing against my bladder (Crede Maneuver). That led to another trip to the urologist where ultrasound showed significant retention and hydronephrosis (water in the kidneys). I was told I needed an operation (this facility primarily did Turps) but first I had to rehabilitate my bladder because at the time it was too flaccid (stretched) for a good surgical outcome. I was given the choice of wearing a Foley Catheter for six weeks, or a program of self-catherization (CIC) in order to decompress the bladder. I chose CIC so I didn’t have to wear a Foley 24/7, and also because I felt it put me more in control.
Six weeks later my bladder was rehabilitated to the extent they could do a Turp, and the hydronephrosis was gone. After doing some research and a lot of thinking I decided to put off the Turp due to the potential of irreversible side effects, primarily retrograde ejaculation. Two years later, I am still doing CIC while waiting for newer procedures with better outcomes and fewer side effects.
I will detail my experiences with CIC in following posts -- but to summarize, once mastered, it’s a painless five minute procedure that allows you to empty your bladder completely any time you want. With CIC, I therefore have no retention issues, no urgency, and in most cases sleep 6-8 hours through the night without having to get up and go to the bathroom. No UTI’s in over 18 months. And because my bladder has been partially rehabilitated, I can urinate normally about 50% of the time without using the Crede maneuver. My IPSS Score (International Prostate Symptom Score) would be Zero (the best), albeit with a little mechanical assist. 
As of now, nothing that I have read about the various current procedures has tempted me to have an operation. That could, or could not change, in the future, but the nice thing about CIC is that you can stop it any time you want with no repercussions. The caveat is that CIC should be done under the supervision of a doctor who will monitor your BPH as required. Similar to seeing a doctor on a regular basis during a Watch n’ Wait BPH strategy.
I know many of you here have already had operations like Turp, and in most cases people seem pleased with the outcomes. CIC certainly isn’t’ for everyone, and I can understand why someone does not want to carry around a urinary “tool box” with them. On the other hand, with practice, it’s not the traumatic and scary procedure some think. I can honestly say right now that for me it’s about as traumatic as brushing my teeth.
I’m offering my experiences and thoughts on CIC for any of those who haven’t yet made up their mind on an operation. It even can make sense for those of you who don’t need an operation yet, but want to increase their IPSS quality of life score. In fact, wish I had done CIC earlier while on Watchful Waiting. Didn’t realize how much BPH had been affecting me for most of my adult life until I was able to empty my bladder completely.
CIC doesn’t have to be a permanent solution, it could just part of a waiting strategy like I’m on, until better surgical operations are developed with better outcomes and fewer permanent side effects.
For any number of reasons, the majority of urologists don’t seem to offer CIC as an alternative to surgery. My current urologist doesn’t as far as I know, but he’s OK with what I’m doing because it works for me. So, either you have to find a urologist you can convince to go along, or go to some of the major teaching hospitals where CIC is probably more in use and better understood. That is where I was taught, albeit not very well, but that is another story.
Jim
19 likes, 2092 replies
Carry-on_CMDR jimjames
Posted
As to PVR's, results vary with Morning CIC having least (normally 300-400 range) versus Afternoon and Evenings most (normally 400-500 range).
jimjames Carry-on_CMDR
Posted
You say you're in the 300-400/400-500 range. That's on the high end right there. Does that include a normal void just prior to CIC, or is that what you catherize without a normal void? Which leads me to the next questions.
When you did your renal ultrasound, did they tell that you had "flaccid", "stretched" or "hypotonic" bladder? They may have used other language or maybe you can ask your urologist if you don't know. Also, did you have a urodynamics test to evaluate your voiding pressure?
Assuming a stretched bladder with high voiding pressure (both common with bph) thren I would urge you to speak to your urologist about increasing the frequency of your catherizations to get your total bladder urine volume (normal void plus PVR) under 400 at all times. If you don't it will stay stretched.
For the first year I did CIC 6X a day so my bladder would never hold more than 400cc and therefore never be stretched. For the second year, after my bladder regained some elasticity, I sometimes continued decreased the frequency, but intermitedly I went back to 6X a day to keep my PVR under 200.
It seems to have worked, because this week, for example, I only did CIC two times. Not two times a day, but two times TOTAL. Natural voids in the 200-250cc range, and estimated PVR 0-100. And I'm not on any drugs.
Unfortunately, most urologists simply don't understand that CIC done in a progressive and logical manner can rehabilitate the bladder. In fact, an imminent urologist told me that I would see most of the benefits of CIC in terms of bladder rehabilitation in 4 months and that at the one year point, there would be no additional benefit. He was totally wrong with me because a year ago, I would have been unable to go days without CIC with such low PVR's as I have today.
Again, if your bladder is stretched, and you have adequat or high voiding pressure, I urge you to reconsider all the meds you are on which make no sense as long as you're on a CIC program. Just don't take my word, but do your research which will tell you that what you should be is increasing the frequency of CIC instead.
Just try and visualize your stretched bladder. How do you think relaxant drugs are going to help give it more elasticity? All they will do is relax your bladder and prostate muscles to let more urine out. In order to get more elasticity, you need to reduce the pressure not just when urinating, but the pressure inside the bladder itself when you're not urinating. In other words decrease the volume of urine in the bladder at all times. I hope this makes sense to you.
Jim
Carry-on_CMDR jimjames
Edited
As to the frequency of CIC, a lot of this will depend upon what insaurance will cover; perhaps you are in the UK and NHS will cover 6x, but I am in the US.
As to the urologist's familiarity, this is a a guy who is a professor of Urology at a good medical college, as well as a practitioner in clinic. He is quite familiar with CIC and/or medications issues.
Tonight I will start Flomax, dropping Uroxatral, and adding one more CIC per day, for a total of 4x.
One of my problems is a spillover (no pun intended) effect from IBS, and an inability to really bear down, such as with a Credé maneuver. Perhaps you don't have any other issues down below, and your problems might be more of a straightline process. My gastroenterologist is working on IBS issues, but that is not yet under control.
I realize that you have thought this out carefully, and researched it thoroughly. At this point, however, having done quite a lot of research myself, I need to adopt a more conservative posture as we try to see what may work.
Thanks.
jimjames Carry-on_CMDR
Posted
All of the PVR citations were after a normal voiding.
You didn't mention your average normal void volume. But again, ideally total bladder capacity should not exceed 400cc. To compute the total, you add what you normally void plus what comes out when you catheterize. Based on the numbers you have given, you are exceeding 400cc in total bladder volume and therefore have not been cathing frequently enough.
As to the frequency of CIC, a lot of this will depend upon what insurance will cover; perhaps you are in the UK and NHS will cover 6x, but I am in the US.
I am in the U.S. and Medicare covers 200 catheters a month which is enough for 6X/day. For those that do not have adequate insurance coverage -- or any insurance coverage 00 most non-hydrophillic catheters are reusable for a couple of weeks. That means you could catheterize 6X day and only have to purchase 4 catheters a month.
As to the urologist's familiarity, this is a a guy who is a professor of Urology at a good medical college, as well as a practitioner in clinic. He is quite familiar with CIC and/or medications issues.
My current urologist teaches at a major University hospital and knows little about CIC. Specialists who teach are more the norm than the exception in my experience, and the popularity of forums like this are a testament to their often lack of knowledge. I.e.if the specialists/teachers were always right, this place would be out of business
One of my problems is a spillover (no pun intended) effect from IBS, and an inability to really bear down, such as with a Credé maneuver. Perhaps you don't have any other issues down below, and your problems might be more of a straightline process. My gastroenterologist is working on IBS issues, but that is not yet under control.
This is beyond my knowledge base, and may account for the Flomax, but certainly not for the fact that you've only been cathing only 3X a day. When you do CIC there is no "bearing down", so I assume your urologist's concern is with normal urination. If so, keeping your bladder expanded (over 400cc) will make bearing down harder and arguably will make things worse than not taking Flomax. It also sounds like your urologist is focused solely on bladder function and not concerned with bladder rehabilitation. This is pretty common because most urologists don't believe CIC can rehabilitate a bladder after a certain point. In my case they were wrong.
As to my issues, no IBS, but my BPH was very bad when I started CIC with an inability to void naturally without the Crede Manuever (pushing on bladder), a huge PVR after my ultrasound test (1500cc), and hydronephrosis of both kidneys due to back pressure caused by high residual urine volume. Today, no pushing to urinate, PVR 50-100, no hydronephrosis, and I have been able to reduce my CIC frequency from 6X/day to 1-2 X/week. And that's keeping my total bladder volume (CIC plus normal urination) under 400cc at all time.
Did I do this by following my urologist's plan? Absolutely not. Fortunately, my urologist went along with my plan because as he said, it was not harmful and didn't have a downside. He still thinks my bladder rehabilitation is an anomaly, but my opinion is that if it worked with me, it can work with others, the problem is that urologists don't usually prescribe it.
Good luck with treatment. Going from 3X to 4X a day should help things. Usually at this point I'd say, why don't you go for a second opinion, but the problem with CIC (except in the Spinal Chord Injury community) is that most urologists -- professors or not -- don't really know enough about it.
Jim
kenneth1955 jimjames
Posted
dennis47445 kenneth1955
Posted
Kenneth, I have a lady friend who had her daugher do it for her when she had to CIC. I didn't go into details, but I think she could not see the point of entry. Her daughter, had to be on-call for a couple of weeks, because my friend was doing it around 5 times a day.
jimjames dennis47445
Posted
Don't know if this is relevant, but I have heard of women using a small hand held mirror to help better see the point of entry.
Jim
kenneth1955 dennis47445
Posted
alan86734 kenneth1955
Posted
Good luck to you all. Alan
111Alex111 jimjames
Edited
My biggest problem is that when my bladder is too full i can`t void at ALL. The first time it happened about 5 years ago, i had Foley fror 5 days. Suddenly, one evenning i felt my temperature rising, i measured, it was 38c/102f, and rising,. It was 23pm, nearest hospital was 1 hour drive. I guessed the fever comed from the Foley, because it was burning there too. The fever was 40c/104 later,, it was winter, snowing, with -10c/14f degrees outside. I put lots of clothes and drove to the hospital. I was t there for 3 days because a serious infection . 3 Days after, the doctor said that i voild need another foley , and i said NO THANKS. I was fine , i could void. Luckilly a nurse suggested self cathething. She said: ¨ This cathether, can will never give you an infection, it will cure it¨. I would rather cure my infection, by completly empty my bladder anytime i wish with a throw away, one use, instant cathether, instead of taking antibiotics, or wear Foley.
Alex
jimjames
Posted
jimjames
Posted
I have just read the posts in the 2 links you sent with much interest.
EP Turp sounds worth exploring but prohibitively expensive for me, and I doubt the UK NHS offer it!!
Now regarding your assertion that you have managed to "rehabiitate" your bladder over 2 years of CIC to the point that you only now need to Self C once a week and can void naturally most of the time. THis I cannot understand as surely the difficulties voiding naturally are caused by the BPH? and no amount of work on the bladder will change that? Or are you saying that but for the initial stretching of your bladder you might not have had any problems in the first place. It doesnt seem to add up to me, unless i am missinfg something? So whilst I am very pleased for you I think it sounds more like a "Divine Intervention" than anything else!
Interested to hear your response, and thanks for all the info on CIC which i will be trying very soon.
Jeremy
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My response:
Jeremy,
Yes, it sounds like EP Turp is only being done now in Germany, and quite expensive. A shame and somewhat disturbing others have not tried to copy the procedure as it invovled no new equiptment, just a different technique.
As to my rehabilitated bladder, I understand your reservations. I am a bit surprised myself it went so well, and so am my doctors.
First, let me say, I'm not *ssing like I was when I was 18. But I'm a far, far, cry from where I was two years ago when I walked into my doctor's office with as close to AUR as you can get without having it. In order to urinate, I had to press hard on my bladder with the palms of my hand (Crede Manuever) and it turned out my residual was over a liter when I was catherized the first time at my doctor's office.
As best as I can understand it, my bladder stretched over the years because of chronic retention, secondary to BPH. Very gradually, it got worse and worse, finally resulting in an inability to urinate naturally. This is called Atonic, or flaccid bladder. It is not unusual, many with BPH have it.
My urologist suggested a TURP operation, because that is what he did. The self catherization (CIC) was initially prescribed by the doctor to rehabilitate my bladder enough so that after the TURP, I would be able to empty my bladder without a catheter. What I found out then, was that if you have a very flaccid bladder, just having an operation won't necessarily fix the problem. In fact, I was scheduled for a urodynamic test six weeks later to see if my bladder had rehabitated enough to perform a successful TURP. If you read the literature, this process -- usually a FOLEY but sometimes like in my case CIC -- prior to an operation like TURP gives better post operative results. So, in many U.S. hospitals, that's how they do it.
My question at the time was could I ever rehabilitate my bladder enough through CIC that I could skip the operation and urinate naturally without a large Post Volume Residual (PVR). And the answer was no. Of course I didn't know it yet, but they were wrong.
The reason I continued CIC beyond the prescribed six week window was not because I expected to rehabilitate my bladder any more, but because I wasn't comfortable with the side effects of TURP such as a high incidence of retro ejaculation. So basically, I continued CIC as an alternative to the operation.
After a rocky start, I started to adjust well to CIC, and the more I adjusted, the more picky I became about what operation I might or might not have. After all, if CIC was working, why the rush to the operating room.
In the beginning I was doing CIC six times a day, and progressively less down to once or twice a day. Then I took daily Cialis and initially it let me stop CIC completely for about a month. But then the effects of the daily Cialis seemed to wear off and I went back to CIC. Probably averaged 4-6 times a day.
Then about three months ago I started to notice my bladder was emptying better. Not only did my volume per natural void increase, but so did my PVR. And, or course, I know exactly what my PVR is because it's the volume that comes out of the catheter after a natural void.
So over the past few months, most of the time I do CIC is simply to check my PVR, to make sure that I'm not kidding myself. And I'm not. Two years ago, my PVR was over 1000cc without catherization. With CIC 4X/day I kept it around 400cc. Over the past few months, with dozens of checks, it's usually between 50-100cc, sometimes close to zero, and occasionally, but never over 150cc. And even at PVR of 150cc, this is more than acceptable to by my urologist as well as meets the standards to end CIC.
That said, on occasion over the past year, I am unable to pass urine at all without CIC. I figured out that this only happens when my bladder holds over 400cc of urine. So apparently, while my bladder has been rehabilitated pretty well, it's still not strong enough to function with larger volumes of urine.
Usually, this isn't a problem, because I generally get the urge to urinate at around 350cc, and will therefore empty it naturally. But on some occasions, either because I don't respond to that urge, or because I may have taken in too much fluid, I run into this problem and then perform CIC.
My current solution is to make sure I go to the bathroom every 2-3 hours, whether I feel the urge to urinate or not. So far this seems to be working and haven't had an incident where I needed to do CIC for the past few weeks. We will see how that goes.
So, yes, as best I can tell, I have rehabilitated my bladder to a significant extent with two years of CIC, in spite of my doctors tell me this wasn't going to happen.
Will it last? Have absolutely no idea! But even if it doesn't, and I have to go back to CIC 2,3,4 or 6X/day, I would still prefer it over the current options.
As a foot note, my International Prostate System Score (I-PPS) two years ago, just prior to CIC, was 33 (severe). Today, it's 9 (mild/moderate).
Of course, this doesn't mean that what worked for me will work for someone else, because not everyone with BPH has a high PVR and flaccid bladder. But even if it doesn't rehab the bladder, it's certainly one more procedure/tool to consider. Hope this was helpful.
Jim
jimjames
Posted
I think a more realistic attiude is that self-catherization can be a very useful long term alternative to surgery for many people, or at a minium a short term solution while they try and make some longer term decisions, or just waiting for better procedures. And, if they get lucky and end up rehabilitating their bladder and are able to stop -- well, that's just a bonus.
Jim
jimjames
Posted
https://patient.info/forums/discuss/5-weeks-after-green-light-laser-surgery-my-catheter-is-still-in-477643?page=0#1733597
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Hello,
I'm happy to hear that your CIC program is working.
Curious what led you to CIC. I assume BPH and retention? Did they want to do an operation? What is your plan? Are you still waiting for better surgical alternatives or do you plan to CIC regardless?
Briefly, in my case I started CIC on a six week program to rehabilitate my atonic bladder enough for a successful TURP. Long story short, I skipped the TURP and have managed my retention with CIC. Starting a few months ago, I was able to go off CIC pretty much entirely (without retention) which my urologist confirms but cannot explain. To me the explanation is that over the two years my bladder was able to decompress and rehabilitate itself now to the point where it is pretty normal for a fellow my age.
You mentioned you're on a 4X/day schedule. Do you periodically measure your normal void (I assume you are able to normally void) volume and then your residual volume via CIC?
In my case, I let my bladder capacity regulate my frequency which I think helped the rehabilitation process. The concept (based on the literature) was that if my catherized volume was 400cc or more, then I would increase my CIC frequency, and if it was less than say 200cc, I would decrease it. Later, instead of using catherized volume, I used total bladder volume (normal void plus catherized void). So then I set my CIC schedule so my bladder never had more than 400cc of urine in it at any one time. The latter, of course would mean more CIC frequency but it also meant less bladder stretching,
If you're on a set schedule as opposed to a flexible schedule based on void volumes, I strongly suggest you consider the latter.
I also use the Coloplast hydrophillic catheter after trying about a dozen different types. Other than it works for me the best, one nice feature is that it's the only hydrophillic where you don't have to break the water bag. The catheter sits in the slippery fluid and is instantly ready to use.
Never heard of "Magic 3", so thanks for the heads up, always willing to try something new.
I assume you're using the Coude tip version which is specific for enlarged prostates. From their web site I also noticed a "sure grip" and "closed system with bag" version.
I once tried a closed system with bag version, but for the life of me I found it impossible to line up the Coude Tip while feeding it out of the bag and the process was more irritating than helpful. I can see it however for someone not using a Coude Tip.
I also started with a 14F, but found that the Speedicath was rigid enough that I could drop to a 12F. Initially, it's slightly trickier to get in, but with a little practice it's easy. The idea is to use the smallest catheter possible that you can work with, so that there's less trauma to the urethra.
The Speedicath doesn't come with a "sure grip" feature but what I do is only touch the catheter on the plastic funnel and let it intially "gravity drop" in, and once in, then I gently feed it, again only touching the funnel. That way, my hands never touch the catheter itself, so in effect I've created my own sterile system. Easier with the 14F (stiffer) but after a few times the 12F (more flexible) worked just fine.
The only thing I can say bad about the Speedicath is that it doesn't fold well, and if folded for over a few hours is practically unusable. My workaround was to keep them in a backpack. Curious, how foldable are the Magic 3's?
Jim
Carry-on_CMDR jimjames
Posted
This guy still wanted to do surgery, but I was persistent in resisdting, but finally agreed to increase CIC frequency from 3 to 4x/day.
Yes, the Magic 3 does have a Coude tip.
I do measure RV, unless I am travelling, and while it remains higher than we would like, going up to 4x/day has reduced it by about 50 to 100ml.
The Magic 3/14FR does bend nicely, but I don't crease them; instead, I use a gallon sized plastic bag to hold several of them, plus the wipes, plus the cheap plastic bags (doggie disposal bags are perfect). They work fine, and the bend doesn't stay, unless they remain bent for a month or so; but they are still quite usable, even after being bent for a month or two.
My last ultrasound, five weeks ago, showed the following:
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FINDINGS:
The kidneys are normal in size and echogenicity, the right measuring 10.4 x 5.6 x 5.2 cm and the le^ measuring 10.1 x 5.2 x 5.9 cm. Prominent column of BerPn is noted within the right kidney. No masses, cysts, stones, or hydronephrosis.
The urinary bladder is normal in appearance. Prevoid calculated volume was 450 cc. Post void calculated volume was 308.4 cc. The prostate measures 5.5 x 3.3 x 4.7 cm, with a calculated volume of 44.2 cc.
IMPRESSION: Mildly enlarged prostate. Large post void residual.
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My plan is to wait for any surgical procedure, as long as possible, despite the pressure from this urologist. I don't doubt his skill sets, but he likes thbings his own way, and I am more inclined to go step-by-step. Frankly, I like his clinical nurse more (as does my wife) and if I switch urologists - as I may well do in six months or so, after my next visit with this urologist - her loss will be felt more.
What I am hoping is to have the PAE procedure become FDA approved and therefore eligible for Medicare. There is one hospital in this area now engaged in a clinical trial of PAE, so I expect some interventional radiologist expertise to be a future result of these trials.
That also would probably tick off my current urologist/surgeon.
Hope I answered all of your questions.
Carry-on_CMDR
Posted
jimjames Carry-on_CMDR
Posted
Thanks for the answers. Your Post Volume Residual (PVR) of "high 200's to the low 400's" is more or less within limits, but that probably means that your Pre-void volume is often over 400cc. If the residual on your ultrasound report is indicative of your normal PVR, then sounds like your bladder is still on the Atonic side. If it were me, I'd try a more agressive catheter schedule to keep TOTAL volumes down to under 400cc at all time, or even lower. Then, see if your PVR proportionally decreases.
At least that's what *seemed* to happen with me. After an agressive CIC schedule (I tried to keep total volume below 200cc which often meant CIC without a natural void) I found that my bladder regained enough easticity to eventually go off of CIC.
I'm curious why your doctor is pushing for an operation when the CIC seem to be working. Did he give you any specific reasons why? Does he have any specific concerns about long term CIC?
Also, if you have time and are interested, the next time you see your
doctor, tell him that you know a fellow with BPH who started CIC with an Atonic bladder with very high PVR's, was suggested a TURP, but like yourself resisted -- and after two years of CIC his bladder has been rehabilitated to the point where he was abe to stop CIC altogether.
Right now my median natural void is 250cc (range 100-300), with a PVR (measured by ultrasound and catheter) usually between 50 and 100cc, sometimes zero and never over 150cc. My urologist tells me he didn't expect this and he has no idea how this is possible, but he admits it happened. This week he did a scan in his office and my PVR was 30cc. He told me that if I had a TURP operation he would be satisfied with that result, but of course I didn't.
RIchard
jimjames Carry-on_CMDR
Posted
I use the same urine dipsticks at home as they use at the doctors and often show positive leukocytes (white blood cells) and some blood. Both normal for CIC so I am told. I havent had a symptomatic UTI for well over a year but lately I do have colonization, which again is normal for CIC and the protocol is not to treat it with antibiotics.
Sorry for all the questions, but not many people here have done CIC as long as we have so interesting to compare notes.
Jim
michaelmike jimjames
Posted
hi Jim,
I had a PAE with Dr Bagla on June 13. I have been doing CIC for 3 years. The procedure went smoothly with twilight sedation., He was a very good communicator, and his staff was attentive and kind. I continued to CIC, and I had a little blood in my urine for 2 1/2 weeks., which is mentioned as something to expect. At six weeks I have not regained the ability to urinate without a catheter. Dr Bagla did mention that in my case, since I have not been using my bladder muscle for a while due to CIC, that may be an issue, and I might have to make a litle effort to re awaken the bladder contraction. I have noticed that inserting the catheter is often much smoother, with hardly any resistance at the point before it enters the bladder, so on that basis, I am optimistic that something good has happened, which may lead to better urination. . Since I have been doing CIC for 3 years, it may be that my bladder has lost the ability to contract its muscle. It's also possible that the embolization has not fully taken effect yet.
I understand that you have practiced a regime of Bladder re tonifying with success, and I would like to know about it.
Thanks for any information that you can share.
michael
jimjames michaelmike
Posted
In all due respect to your doctor, it seems to me the cause for your lack of present bladder tone was not CIC, but whatever made you start CIC in the first place!
In general, CIC rehabs the bladder by decompressing and therefore resting it. In my case it rehabilitated my bladder to the extent that I went from as close you can get to acute retention to a bladder that funtions normally 90 per cent of the time.
When you CIC do you just let the urine drain out or do you "push" slightly the bladder's detrussor muscles and therefore force it out a little faster than it normally would flow? I did the latter intermittently, maybe 10-20% of the time when I CIC'd on a regular basis, my theory that it would keep the detrussor muscles in shape. Not sure if it was necessary but made sense to me and seemed to work. You might try this if you don't do it already moving forward.
But again, I think your doctor was just grasping at straws (no pun intended
) because things didn't get better right away, which is not that uncommon in all these types of operations and procedures if you went in with a flaccid bladder to start with.
That said, it's possible your bladder had gotten to the point PRIOR to CIC that no operation, including PAE, could really fix, as these operations don't directly help the bladder but instead help to relieve the obstruction. Time will tell but the good news seems to be that you have had some prostate shrinkage which seems to make CIC easier.
Jim
michaelmike jimjames
Posted
jim,
thanks for your quick response.
Regarding the cause of the possible flaccid bladder, about a year and a half ago , as I was looking into possibly having a TURP, I did a urodynamic test and it showed that my bladdrr functioned well enough that I could expect to benefit from the TURP. (I did not do the turp) . since then I have been doing CIC 6 times a day. So the PAE dr and my urologist have both thought that my bladder would be in good enough shape to benefit from the PAE.
I agree with you , it is too soon to judge the success of the PAE procedure. Although people often have results in the first 6 weeks.
I will try to push a little while CIC, to see if that helps. The PAE dr suggested that I could do that after a while.I have performed a home made test , where I see how high my urine stream can go if pointed up in the shower (doing CIC), and it doe seem to go above the navel some inches, which indicates some muscle tone, I think.
the PAE physician was also concerned that bladder diverticula could reduce the effectiveness of the bladder detrusor muscle.
Anyway, CIC works well, with no UTI's in 18 months , so I have that. The PAE is to try to get away from catheters ..if practical.
thanks again for sharing your point of view and experience.
Michael
Howard31850 jimjames
Posted
Hi Jim - thanks for the continued education. I have my PAE at UNC in just 10 days now and boy am I nervous - but I'm also hopeful it will help end this misery. Your lessons on CIC have really helped me in the interim.
I have a general question for you. Usuually the internal sphincter muscle works automatically in conjunction with the bladder detrussor muscle. So when we self-cath we are forcing it to open by going the wrong way on a one-way street. Also we are opening it without the cooperation of the bladder detrussor muscle to drain the pee that is sitting there. Over time does this create a problem by opening it the wrong way and bypassing the detrussor muscle? From your great results the answer is obviously no but I was wondering what you thought about it? Thanks as always. Neil
alan86734 jimjames
Posted
Hi, All. I have been absent for a few months and much has happened during that time. First order of business is to give you an outline of myself and an idea of my concerns and the focus of my future contributions.
I am an 87 year old male with a background in mechanical engineering. Not medically trained specifically, but with enough medical knowledge to follow discussions. Concerning health, I will keep to my urological issues. My principal malaise is urine retention with paruresis (shy bladder) following as a lower priority. Years ago (1947) I did experience a single episode of renal calculus (kidney stone) which led to my first cystoscopy (rigid because the flexible technique had not been invented yet). The next cystoscopy I underwent was performed on June 30th, 2016 in the Drs. offiec. This was followed by a urodynamic test performed August 25th, 2016 at UVM Medical Center.
Of the “Patient” contributors who have helped me along the way my sincere thanks to “Cartoonman”, who helped me out of the wet noodle syndrome, and “jimjames” for a wealth of very valuable and utterly reliable information derived from his experiences. And to a host of others who I have touched base with, both from “Patient” and from other sources. To all of you, my heartfelt thanks!
Regarding the issues I am interested in, I will post my comments individually to make them easier to reference. Pleae search for “Flexible Cystoscopy” and “Urodynamic Tests” by early next week, at the latest.
Bye for now. Alan.
glenn77 Carry-on_CMDR
Posted
I just wish I had seen this discussioin a year ago, and before I was referred to a urologist who did all the tests, and then told me about all the awful things that might happen if I didn't have TURP ("The gold standard," he said.) Acute retention, dead bladder, kidney failure, living with a catheter, and so forth. While my stream was slow, I had NEVER had acute rentention, I just had to get up 3-5 times at night, but I had no difficulty getting back to sleep. He never mentioned CIC as something that could be done. So I rushed into a GL procedure on a Thursday, the Foley came out on Friday he left on vacation that day. By midnight on Saturday, the next day, I was in acute retention and at the emergency department of the hospital where another Foley was inserted where it remained for another week. Either the GL, or the insertion of the Foley at the ED apparently damaged my sphincter, and I've been totally incontinent for the last 9 months, living in pull-ups, pads or usiing an external condom. I wish the urologist would have told me about CIC and let me try it to avoid awful state I've ended up in.
I am scheduled to have an artificial sphincter implanted this week on Wednesday by a doctor in another city. My first doctor refused to discuss artificial sphincter implantation. (Another doctor in his practice does the procedure), saying it would be admitting defeat.
If I hadn't found another doctor willing to do this implantation, I don't know how or where I would be right now. At least I have the hope of being dry, or at least "drier" than I am now., and having some dignity and some of my quality of life restored. It seems that there needs to be a mandated medical protocol that patients be fully informed, in writing, of all the options open to a patient with BPH, and that doctors should not be allowed to do a " sales job" for TURP.
kenneth1955 glenn77
Posted
Glenn. I am very sorry for what happed to you. That is why I try to post to men today . I know it's to late now but you should have gotten a secound opition. But what's done is done. Move on with the artificial sphincter. I have read up on it any even watch them put one in. You will be able to live a much better life and move on to enjoy it. Let us know after it done how you are doing. Take it easy Ken.