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

Jim

Hi Jim,

I am having absolutely no natural voids now.  Just the urge now.  By looking at my Excel spreadsheet, I would say that my average volumes are in the low 200's ml.  The way that it is set up, I will have to add a formula for several columns to get a true average volume.

After 2 to 3 months of self-cath, the urologist wants me to do the urodyamics tests which will be in June or July.  He says, right now because of the almost 2000 ml removed when the Foly was put in, it is all about bladder recovery before any surgery is even considered.

He is a TURP guy, and if I do decide on surgery, I am leaning more towards Rezum, so I will cross that bridge at a later time.

Steve 

I am really working at keeping my volumes below 500 ml as I was instructed to aim for 200 to 300 ml.  I recently modified some of my cooking as certain spices correlated with higher (over 400) volumes.  I am 61 and semi-retired so I have the time for the self-cath schedule but currently it does limit my outdoor activities.

Steve 

Steve, I know what you mean by limiting outdoor activities.  I just got back from visiting the Big Island of Hawaii.  I live on Oahu, which is around 200 miles away. There's an eruption taking place now in the Pahoa area, but we were there for other reasons.  I was with around five friends, and we were traveling from area to area on the Big Island.  Because of CIC, at least I wasn't looking around for a restroom every hour, as in previous outings. Never the less, it took a little more work than someone that has a normal bladder.  I would have to go find a restroom, find one with a stall, hang my backpack on the door, then do the necessary preparations to do a safe and sterile CIC.  I couldn't just go use the side of the road, I guess I could, but what a sight it would be, if someone was to see what I was doing, sticking a tube in my penis.  Still yet, better doing CIC,  is a big plus in feeling comfortable with an empty baldder!

Dennis,

You might want to carry a couple of catheters with bags attached for those times you can't get to a restroom. With a chair, blanket or coat on your lap, and practice, you should be able to do a "stealth" CIC. SCI (spinal chord injured) fellows do this all the time in wheel chairs. I suppose it's possible to do it without the attached bag and into a container but a little more tricky. Very sorry about what is going on in the BIg Island but glad that you and your friends are safe.

Jim

yes, it's scary what's happening there.  Leilani Estates, is a very safe looking location. I bought land there back in 1973, because it looked like no way an eruption could occur there.  Boy, was I wrong.  Fortunately, I sold that parcel of land many years ago.

It was more ten steps forward and five back and then a few forward, etc. But around the two year mark, I noticed a marked improvement (maybe 20 steps forward) and that allowed me to go off the catheter for days, weeks, even months at one point. Have you read my "on/off" strategy thread. If you do, you will see that I really kept pushing things, but when I went maybe too far, then I'd give the bladder a real rest with maybe 6-8 caths a day and no natural voids. Might do that for a couple of days.

I should add that my results are my results and may not be yours. I mentioned this all the time but maybe not as much as I should since a lot of posts get lost here due to the bad navigational features. That said, I don't consider myself a total anamoly, so if it worked for me I'm sure it will work for some others. And if you look through the threads you will find a number of men who have had significant improvement with CIC, perhaps not mine, but significant nevertheless.

I wasn't expecting the results I got and would have been happy with far less as long as I didn't have to have a surgery or take drugs. The rest I feel is a bonus. So, definitely strive to get off the catheter, and if my "hard/easy" approach works, great, But if not, just take it as far as your body let's you, and then decide if this is better than drugs and/or surgery, at least for now. If it is, then you've won the prize and keep going. If it isn't, a lot of new surgeries and procedures coming out now for consideration.

Jim

Hi, Jim,

I'm taking the risk of going off topic a wee bit, but I need your advice (don't we all?!!!). I am performing C.I.C. three times a day; Things were moving right along and I got up to an average 50% NV / 50% Cath.Then my stress levels rose and I am now down to 25% NV / 75% Cath.

I am proposing a regimen of detrusor and Kegel exercises but I haven't a clue of most timings nor how to combine the Kegels.

The fill and void rates are OK (I have the figures fror

the Urodynamic Tests) but:

1. How long do I hold for when full?

2. How long do I wait before next fill?

3. How many complete cycles do I perform?

4. Do I do Kegels before, during, or after each cycle?

5. Wat is the Kegel weight or weight range I should be using?

Thanking you in advance for your responses.

alan86734.

Alan,

My void/cath ratio had a lot of up and down swings, and with so many variables it's hard to pinpoint the reason, and sometimes just to accept it as a long term process. Not sure if kegels will help and personally I never did them which doesn't mean you shouldn't. Because of that I can't really advise much on kegels from personal experience. As I've mentioned before, the natural void/cath ration isn't as critical as simply keeping total bladder volumes under 400ml, whenever you can. Down the road, you can try putting additional stress/exercise on the detrussors as I've mentioned in the "on/off" thread. How long have you noticed this issue? Has your fluid intake changed in either volume or substance such as alcohol or coffee? Sometimes eliminating alcohol and coffee can help. And then there's the stress you're talking about. Mild exercise such as walking can be helpful as well as mindful meditation, etc. A lot of variables going on.

Jim

HI Alan, you are not the only one that experienced reduced natural void volume after staring CIC . I tried to explain it as what I've read before as bladder atrophy in another thread. I experienced it as well as many people on this forum. However, there are some people here refused to believe it, and became combative. Probably from consuming too many sardines. 

Please share more details. How long have you noticed it ? Hank

Refused to believe your opinion?  That is your definition of "combative'! My gosh. What is happening to the internet? As I've stated before CIC does not cause bladder atrophy as long as the detrussor's are exercised either during CIC and/or with natural voids. Please show me any medical references to the contrary.

To quote your post just yesterday, you said "I suddenly remembered that OAB was the deciding factor for me to stay with Doxazosin. The last time I tried quitting it, I had bad OAB. I did not want to go through the hassles with bladder training all over again. 

OAB (overactive bladder) huh? Do you think that might be in part why your natural voids decreased?

Jim

Maybe you're experiencing lower NVs because by doing CIC there isn't as much pressure pushing out the urine.  If I have between 400-500 cc in my bladder I can have a fairly long NV.  But now I know better than to let it get that full.  Its tricky at this point for me to tell exactly when my bladder is filling up.  I get urges but sometimes when I CIC there is @200 and sometimes 450.  But its changing and for me that is positive. 

Alan, in due fairness, did you happen to just stop some kind of alpha blockers just before noticing the decline in the ratio ? If it's the case then the AB is the reason, not CIC. Hank

Keith, Yes. I've been trying to make that point as well. Just before I started CIC, I had a 400ml natural void at my urologist's office. Great, huh? Well, not really, because I then cathed out 1500 ml ! Personally, I think focusing on NV's, especially in the beginning, isn't productive with the longer game in mind. Decompressing, resting, and then exercising the bladder whether linear or later in an "on/off" fashion gives you the best shot at bladder rehab. Remember, folks here who CIC don't have healthy bladders anyway, so talking about degrading the bladder really doesn't make sense when bladder rehab strives to do the opposite. What is the alternative? Stop CIC and what? Surgery? Fine, if that's what you want to do. Take drugs instead? Well, most people who have success with drugs don't CIC. Combine drugs with CIC like Hank? I have no problem here and tried it myself but came to the conclusion I didn't like the trade offs. And so without the drugs I now have natural voids 250-300ml, sometimes as high as 400ml. Retention is 100ml or below, often 50ml or below and I've recorded "empty" at times via bladder scanner.

Jim

Jim

Maybe I got you confused here. I experienced reduced NV/PVR after few months with CIC. I did not like it, so I started Doxazosin again. About a year later, I tried to quit Doxazosin again and found out what I thought it was OAB. Actually, I just realized that it might something else. The "OAB" was the final straw for me not to quit. There are no correlations between the 2 events.

You should admit that Alan is not the only one that brought this up. If you don't, there is no more to say. Hank

Maybe I got you confused here. I experienced reduced NV/PVR after few months with CIC. I did not like it, so I started Doxazosin again. About a year later, I tried to quit Doxazosin again and found out what I thought it was OAB. Actually, I just realized that it might something else. The "OAB" was the final straw for me not to quit. There are no correlations between the 2 events.

You should admit that Alan is not the only one that brought this up. If you don't, there is no more to say. Hank

Keith, I have a question for you. If you don't think that you've have any chance of completely reverse your BPH symptoms, would you chose CIC as a long term choice ? Hank

@hank: You should admit that Alan is not the only one that brought this up. If you don't, there is no more to say.

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Hank, I'll try this one more time and then I'm moving on, because either you're not listening or I'm not communicating very well.

No, Alan is not the first to bring this up, nor do I doubt that NV's can at times decrease with CIC. I fully admit, and have fully admitted to both before. NUMEROUS times.

Where we differ is that I don't see a decrease in NVs as negative but part of the natural process of bladder rehab. Alan brought up (and so have I previously) the idea of lower bladder pressures with CIC which can result in lower NVs. Lower bladder pressures are good, not bad. I used the example before that prior to CIC I had 400ml (and more) NVs but my retention was over a liter! Not good. Another reason is math. The more you remove with the catheter, the less left to come out. And most important, one should not focus on NVs with bladder rehab but on the overall progress (or lack thereof) such as the return of bladder tone and nerve signaling, etc.  The other point I take issue with is the idea that CIC somehow degrades the detrussor's when the opposite is true as long as you make a point to exercise the during CIC or with natural voids.

So in summary, Yes, some men have lower NV's when they embark doing CIC but it's not a negative thing and just part of the overall process and has nothing to do with degrading the detrussor muscles when in fact bladder rehab with CIC does just the opposite, it builds them up by decompressing and resting the bladder so when you do stress it there will be more results.

If you want to keep bringing up lower NVs with CIC, be my guest, but I think it's just a red herring and misses the bigger points of bladder rehab. I'm also not sure what you're trying to say or accompish? If you're against CIC then why do you do it? Do you doubt that CIC has helped many men here in this forum to one degree or another? Do you feel the risks of CIC are not worth the rewards? I'm at a loss and taking a break from this.

Jim

I've read your question over about three times and I'm not really sure what you're asking.  I don't really expect that this will be a long term solution.  From what I've read I don't expect a complete reversal of the BPH symptoms.  I think that I have an obstruction and that coupled with some other behavioral particularities caused me to let my bladder get way too stretched out.

If I expected CIC to completely reverse my BPH symptoms, it wouldn't be a long-term solution... it would be a short term solution.

"I think that I have an obstruction and that coupled with some other behavioral particularities caused me to let my bladder get way too stretched out."  Other than the "behavioral particularities", that is what happened to me.  Obstruction -> incomplete voiding and retention -> badly stretched out bladder.  That is the conclusion of my urologist, the family member that is an MD, and myself.

They drained about 2000 ml out of me when the Foley was put in.  The urologist says that it took a while for my bladder to be stretched out that bad to hold that much.  After a month on a Foley and about 2 months of CIC, I am getting urges to pee several times a day but still cannot pee without CIC so there has been at least some bladder recovery.  In a few weeks I need to check in on the urodynamic tests.

I think the whole recovery process is a combination of both short term and long term processes that will lead to a cumulative result. 

There is a third use for having a bladder scanner which is more common than OAB bladder retraining, and that is checking total bladder volumes to see if catherization is needed or not.  This is what they frequently do in the hospitals and nursing homes and studies show it cuts down on unecessary catherizations, be it a straight cath (cic done by someone else) or a Foley. One could also us it at home as part of a CIC program instead of using a cath schedule. Again, probably not necessary because you can make adjustents to your CIC schedule based on a keeping a void log but if your into experimenting around, and especially if you're pushing things using the "on/off" strategy, it can be useful to see what's in there without having to empty the bladder via CIC.

Jim

Hi Jim, I don't have a smart phone,how would i use the bladder with out one?Is it like the one in the URO office?I would think that would be very expensive?

frank,

Since you don't have natural voids you don't really need a scanner.

JIM

Jim, Is it possible after CIC I don't get it all out?Sometimes 2 hours after ,i get this urge and 400 or 450 ml come out? I'm doing CIC 6 t0 7 seven time s a day now . My Uro says it's doubtful that i will ever have a natural void again. i wanted to do a Kidney ultra sound again after 1 year ,he says i don;t need on.I would rather have your opinion then his?

Thanks Jim,

frank,

Frank, I'm pretty sure you're getting it all out. Remember, you have a diverticulum plus no natural voids. It's normal that sometimes you get an urge and 400-500ml comes out after a couple of hours. I wouldn't worry about it. Happened to me as well when I didn't have much of a natural void. I also cathed 6-7 times a day.

Jim

Thanks my  friend-Jim,

frank,

Not a thickness of the bladder, no. Think of a diverticulum as a mini bladder right next to your regular bladder. A lot of people have them and they usually don't cause any problems so are left alone.

Jim

Jim, Thanks for this info on diverticulum. Jim what is a median lobe? This URo now says i don't have a median lobe. What is a median lobe? 

Thanks again Jim,

frank,

Jim

Hi Frank,

Here is a picture:

http://bodyanatomyx.com/bladder-and-prostate-anatomy/bladder-and-prostate-anatomy-prostate-anatomy-clinical-correlate-epomedicine/

The medial lobe is the darker pink area at the base of the bladder with the shading kind of showing the bulge of the medial lobe.  Last night, I was talking to the family-member-MD and putting together the history of my severe BPH and treatment to date, he speculated, that I may be a medial lobe candidate.

Steve 

thanks 

frank,

Jim , i did not see another uro. I am going to see another one. My bladder and kidney ultra sound says nothing about me having a median lobe.My last cystoscopy says i has a diverticula ,prominent detrusor muscle.I'm confused. He tells me i have  diverticula. The urologist. I saw before this one said i have a median lobe, and a diverticulum, don't know who to believe.My next venture will be another uro that will look at my tests and not rush me in a 5 minute consultation. What is a prominent detrusor muscle?

Thanks as always JIm

frank,

Bladder kidney ultrasounds don't necessarily mention median lobes but should show a diverticulum. Cystoscopy reports also don't necessarily mention median lobes but also should mention a diverticulum. Prominent detrussor muscle is common with bph because it has been over used trying to push the urine out. Is the next uro a rezum specialist? Because if you're not going to get a procedure probably not that important whether you have a diverticulum or median lobe

transabdominal ultrasound (TAUS).  This should probably be done before any prostate surgery is done.

Steve 

Steve, i did not do this test. I did a bladder kidney ultra sound ,and urodynamics ,and cystoscopy. had to different answers from 2 different urologists. One says i have a median lobe ,the other does not say this. He says i have a diverticula.I wish i could find a urologist that explains better and not the rush consultation. Have you had any procedure done?

frank,

Jim,The last urologist said i have a diverticula and a median lobe. He did a cystoscopy. I looked at the report ,it only said that i have a diverticula ,no mention of median lobe. The bladder kidney ultra sound says nothing about median lobe.This was the last urologist from UIC.I don't get it.He said I was not a candidate for URO LIFT because i have a median lobe. i'm confused. No mention of diverticula in bladder kidney ultra sound test. 

frank,

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Doctors are not always the best at explaining things to patients.  I am very fortunate to have a family member who has been an MD for over 40 years and I have known for over 60 years.  He is very good at explaining things to me.  So far the urologist that I have been seeing has been good at explaining things too.  Actually, the family-member-MD has approved of my treatment to date.  We talked for a while about my situation tonight.

The bladder-kidney ultrasound is different and it is not an ultrasound of your prostate.  The purposes of the bladder-kidney ultrasound include the following (and more too):  1) check the volume of urine in your bladder, 2) check for damage to your kidneys from an over-filled bladder that backs up into the kidneys, 3) check for bladder and kidney stones.

In a cystoscopy, a tube with a camera is inserted into your urethra and slowly moved up into your bladder so it can only see what is in view of the camera.  In a transabdominal ultrasound or transrectal ultrasound the instrument creates an image of the shape and volume of your prostate.  I am included to say that cystoscopy and ultrasound collect different information.  I am not an expert though.

I have not had any surgical procedure done at this time.  As the urologist and the family-member-MD have both said, when the Foley catheter was put in, they took out 2000 ml of pee so my bladder was very badly stretched out and before any surgery is considered my bladder needs to recover.  That is what several months of self-cath is for.  Think of an old badly stretched out party balloon that has lost its air.

That I can feel urges and then self-cath out about 250-300 ml shows that my bladder is recovering.  That I still cannot pee normally shows that I am still blocked by my prostate.

I hope that I have been able to help.  I am not an expert though.

Steve 

I have never heard of TAUS from my URO nor from this forum? Seems as though this would help see in more detail where the blockage is. I had a Cystoscopy done but I don't believe it recorded anything, I was told is was just to help the URO see where the blockage is, if any. It would be great to have a camera or a clear image of your prostate and urethra. Did I misunderstand or are these options available?

@tom6446:  I have never heard of TAUS from my URO nor from this forum?

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A few of the various imaging techniques have shown up in the various prostate forums.  I may have seen more about imaging on the Rezum forum.  There was one post that mentioned using high-resolution imaging to select the points of Rezum injection to minimize prostate damage.  I read about TAUS in an article in the Asian Journal of Urology.

When my cat had an ultrasound to better diagnose her IBD to chronic colitis, I was amazed at the resolution of the ultrasound to see healthy (but swelled) layering the wall of her colon (colitis) as opposed to disrupted layering (lymphoma).  Cats and their internal organs are a whole lot smaller than humans and their internal organs.

Detailed imaging of the prostate before and during surgery could go a long way to both better diagnose the obstruction and minimize the damage.  I don't know why more urologists don't do this.  Maybe the better informed patient just needs to ask.  In the grand scheme of things, the imaging is not a whole lot more expensive and if it means better results...

Steve 

Hi Steve,  Thanks for all that info. No i have not had any procedures. I have been doing  CIC for 18 months.I still have complete urine retention ,no NV.I was put on a foley for 5 months,it was taken out once a month ,no luck still no NV, put back in, this went on for 5 months. Now after 18 months i still have complete retention.I wonder if having this foley in for 5 months made the retention worse? NO NV. I don't know. What would you MD friend say regarding this?

Thanks Steve,

frank,

---

1) collect your thoughts on if the Foley is causing the complete urine retention and write them down.

2) turn your thoughts into a question for the urologist.

3) ask the urologist the question.

4) get a 2nd opinion preferably from a more experienced urologist.

Steve 

Hi, Jim,

Just wanted to check in and get some feedback from you. I am now starting my 28th month of CIC and haven't had a UTI in over a year and a half now. Typically, I CIC 5 or 6 times per day. Once in a while, I will cut back and CIC 3 or 4 times. Haven't felt comfortable pushing that as my NVs are still below my CVs.

For the past 4 weeks now, I've been experiencing double--sometimes triple--NVs before CIC. That used to be an occasional event. Now it's almost a given before I CIC. My NV totals have grown from about 25% of my TV to about 33%. This doesn't happen every time, but it's becoming more consistent.

I usually have a NV in between CICs, but at those voids, I rarely experience a double void--and I suspect that it's because my bladder isn't holding as much urine. My NV amounts are greater if my TV is greater. For example, I did a series of NVs that totaled 380 ml--a new record for me. And followed that with a CV of 200--so I had a TV of 580 ml. 

The first week I started experiencing this increase in double voids I thought it was a fluke, but now I'm wondering if I am making some progress. Is this how things progressed for you?

Have to say that I pretty much gave up hope at 24 months of CIC of seeing my bladder regain function. Yet, I've already come much further than the docs said I would--given my 7,000 ml retention. 

Stebrunner

Hi Steb, Good to hear from you. Hard to follow everything in this thread, but Ive stated several times that I had a major jump in progress at around the 24 month mark, just like you. It all sounds very favorable to me. Double and triple voiding means the bladder is willing to do more of the work previously delegated to the catheter. 380ml is an excellent natural void, whether it's from a single, double or even triple void. Forget the docs -- most don't even understand the idea of bladder rehab and those that do mostly believe progress stops at the 6 month point, but you and I know that is not so. If you haven't already, you might want to read my "hard/easy" CIC thread. Some of the techniques could take you even farther. With a PVR of only 200, it's not inconceivable you could start skipping a day or two of CIC very soon.

Jim

I'm coming up on the two year mark in July or August.  So far, not that much improvement, but I have my fingers crossed.  I am hoping that I'll have great results like you guys.

Hi Dennis,

As you can see, it sometimes takes a couple of years before results kick in. That said, I think the best way to look at bladder rehab is that it's a bonus of CIC but not a guarantee. Even with no bladder rehab, it still can be a viable alternative to meds or surgery. Have you checked out my "easy/hard" thread yet?

Jim

I don't I have.  How can I get there?

Site is hard to navigate, I know. Check back later and I'll post a link.

Jim

Dennis,

Here's the link to the "on/off" strategy

https://patient.info/forums/discuss/self-catherization-an-on-on-off-strategy--591671

wow!  what great news.  I'm coming up on my 24 month soon.  I think it was in August or was it July, I'm not sure. I'm hoping that I can have an improvement in my NV's.  Are you on any kind of medication for your bladder or prostate?  As for me, I'm not on any kind of medication, for anything.