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

Hey Jim,

Thanks much for your reply. To answer your question, before the bike spill I had no problems urinating, which made it such a mystery to me when I couldn't urinate at all after the 5300 mls of bloody urine was drained from my "massively distended bladder". I did ask this question to the LPN doing the urodynamic testing and she said that all the pressure built up in my bladder from so much urine allowed me to urinate. Mind you, I couldn't cross the t's and dot the i's like I could in my younger days when signing my name in the snow up in Michigan, but was able to urinate with regular frequency. I would get up once or twice during the night and would make 2 pit stops on my daily 3+ hour bike rides. So apparently the reason I failed the urodynamic test is because there is no excessive pressure in my bladder that allowed me to urinate before the spill. She did say, however, that there IS pressure in my bladder and it is not "dead", so there is hope that it can be rehabbed. I will discuss this further with the uro on my appointment on October 25 when I expect he will recommend CIC. Which brings me here to seek experience and enlightenment.

If CIC is recommended and I have no other options, I will give it the old college try after touching base with my EP. And you are correct, there IS a reversal agent now for Pradaxa as with the other newer anticoagulants. This remains a concern as I still get blood in my urine during exercise. The LPN gave me a plug for my cath to use on bike rides and there was blood in my urine for several hours after the ride. When I don't exercise, no blood. After my fall, I was advised by ER staff the blood was likely caused by the blunt trauma from the fall AND the fact I am on blood thinners. They said it was like a "bloody nose in my bladder" and it did clear up after a few days while I was advised to keep taking Pradaxa. The blood returned when I started exercising again. I assumed it was caused by the cath irritation but the LPN said it was most likely dehydration. However, I constantly hydrate during my bike rides but still bleed and am wondering if the plug has anything to do with it?

Lastly, I think you are correct that my problem lies with my bladder and not the prostate and expect the uro will confirm this on my next appointment. My brother had laser surgery on his prostate a few years ago but did not need CIC as his problem was resolved with the surgery. Since my father had chronic UTIs, I'm assuming part of this problem is from genetics? FWIW, I was a bed-wetter as a child and have researched neurogenic bladders; do you have any experience in that regard?

Anyhow, thanks again for your most helpful response and I will continue researching the comments to your OP. You seem to be the "go to guy" for CIC and I look forward to future communication with you and others with experience with CIC.

Best regards,

Patrick

Hi Patrick,

could you please tell me what is the underlying problem that made your bladder as it is now?

Also I was wearing a catheter for two months, and I had blood sometimes.

Have you tried to use a valve with your catheter? I liked it because if you use it, you

don't have to use bags.

Hi Alex,

Thanks for your response. The LPN who performed my urodynamic testing said it took years for my bladder to gradually expand to its present state. All the while I was urinating normally and had no pain or symptoms. I noticed my abdomen was expanding but assumed I was gaining weight, a common side effect of some of the meds I am taking. When 5300 mls of urine was drained at the ER, I left 10 pounds lighter with a noticeable flatter belly.

Not sure what the underlying problem is that led to this condition but am hoping the uro can shed some light on why I was retaining urine. I have read about neurogenic bladders and will ask my uro if this may be the problem.

Curious about the valve for the catheter. Where do I get one? The nurse gave me a plug for my bike rides but didn't offer a shut-off valve. Does this eliminate the need for a night bag? Are you now using CIC or what was your solution?

Thanks again for your reply and best to you going forward!

Patrick

Hi Patric,

a valve illuminates the need of the bags because urine is collecting in your bladder,

but you have to remember to go to urinate, and of course you should ask your doctor about using it.

My doctor was against it, but I used it anyway.

Best.

Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

Hey Alex,

Your link was removed by the moderator...can you please send to me in a PM as referenced in the moderator's comment?

Thanks!

Patrick

Patrick,

Keep in mind, please double check any of my thoughts with your doctor, however it seems to me that you should expect no more blood -- possibly less -- in your urine than you've been getting with the Foley. So, if being on a thinner has not been an issue with the Foley then it shouldn't be with CIC. The exception might be the first few weeks when some of us, including myself, had more bleeding as the body got used to things. You should discuss this possibility with your doctors, and if they think necessary, come up with a plan. For example, I would not start your CIC journey on Friday afternoon when your doctors are gone for the weekend! It also might make sense to do your first cath in your doctor's office, so if any problems arose, they could take action. In short, I don't think thinners will be a problem but always better to err on the side of caution.

As far as neurogenic bladders are concerned, my knowlege base is probably what you have read so far. However, if you had a neurogenic bladder I believe it would have been diagnosed with your urodynamic testing. If they didn't fully explain the results, call them and ask.

As to blood in urine while exercising, this is not that unusual even when you're not on thinners. And I would think blood in urine while exercising AND wearing a Foley would be considered pretty normal do the exercise, bumps and friction (not dehydration) but that is just speculation.

Jim

Thank you Jim for helping Pat

Your the best....Ken

Medicare covers up to 200 catheters a month through Part B medicare. They are considered medical equipment, not a prescription medication which is covered under Part D. Part B pays only 80% of cost of medical equipment so I have what is called a "medigap" insurance plan that pays the 20% not covered by medicare. Part B medicare also covers things like physicians services (even if your are hospitalized), so its a good thing to have if you can afford a medigap plan. There is also an annual deductable for Part B - I think its about $140 or something; it seems to go up every year. Here in the U.S., the Republicans are always busy trying to drill holes in medicare so their constituents (the wealthiest Americans) can make more profit off of our health care. So someone like me ends up paying

If you can get meds through the VA its probably a better deal. I'm seriously thinking of dropping my Part D because, even though its only @$35 a month, the formularto one I hos e4 seems to

Hi Patrick,

My Original Medicare (part B, I think) and United Healthcare supplement pick up 100% of catheters after deductible. I recommend checking with Medicare. You can get them on the phone pretty easily

Keith, Thanks for your most helpful reply; it's just what I wanted to hear! I DO have a Medigap plan that covers copays, so I should be good to go with caths going forward without re-enrolling in a Part D prescription plan. Curious how you actually get your caths and supplies...do you get them online or from urologist? If online, how does Medicare pay for them? Do you have to front the cost and be reimbursed by Medicare?

Thanks again for your reply and best to you going forward!

Patrick

Patrick,

I learned how to cath at a Urologist's office. They put in a running prescription for me with one of the distributors. They must have passed my Medicare and insurance information to the distributor. Every month the distributor calls me and asks how many I need, and they send them, to my house.

Thomas

i wonder if medicare covers all types of catheters or only the cheapest ones?

What catheters are the best ones to use?

Thanks.

Fastest, easiest and most accurate way to get your insurance questions answered is to call a good cath distributor. They know the insurance part cold because this is how they make most of their money. They also interface with your doctor, getting rx's, etc, making the whole process seamless, at least mine did.

Jim

Thomas,

Thanks for your reply. I'm hoping my uro will do the same...sounds like the perfect solution! Curious about the cath lessons at the uro...was this done in one session and did you go away confident that you could continue on your own...or did you need subsequent lessons? Any helpful hints or suggestions much appreciated!

Patrick

Hi Light1,

I have Plan F under United Healthcare/AARP. Someone said that Plan F was going away. I will check this this week but have you heard anything about that? Thanks.

Hi Howard,

Sorry, I don't know. I would call them. Also you might check with a medical supply service that specializes in catheters, as Jimjames suggested. I used 180 Medical, but there are a number of others.

Best wishes,

Fred

Howard,

I hope you're wrong about PLAN F....mine pays ALL my copays and I'd be up the creek without it!

If anyone has info about this, please post!

Patrick

Patrick,

I was at the Uro to be checked out before Rezum, and I mentioned that I read about self cathing as a way of rehabilitating the bladder, and some were doing it indefinitely as a way of dealing with BPH. The Uro showed me how to do it himself, they usually have staff do it. unfortunately he skipped the hand washing step, and I had a UTI the next day. They gave me 10 red rubber catheters and 2 tubes of lube to take home. The next week while I was in for a cystoscopy, he had a staff member make sure I could empty with a catheter.

I declined to do Rezum, and kept doing the self cath until now, 1.5 years later. The Uro sent a prescription to their distributor for me, and I think passed on my Medicare and insurance info.

I might do a procedure this year, because I have had 3 UTIs in the 1.5 years, and I am tired of doing self cath. I'm thinking I might do rezum, but an ejaculation preserving type of TURP looks interesting also, I would need to find someone preferably in California or Florida to do it.

Thomas

Sorry about the end of my post. No, I wasn't abducted by aliens but I think my computer was. At the end of my composition each letter I typed did not appear for a couple of seconds. So I tried to type without seeing it. It was several words behind me. Then I typed something wrong and hit the backspace several times. When that operation started it wouldn't stop so it was deleting everything I wrote. So I quickly posted it before all my work was gone.

Maybe I shouldn't have said "republicans" 😦

Thomas,

Don't know much about Rezum, so just Googled it. Sounds more like treatment for BPH while my problem seems more to do with a distended bladder. I will learn more about my options when I return to the uro on Friday to discuss the results of my recent urodynamic testing. I was not able to void during the test so another Foley was put in and I expect self-cathing will be recommended. I understand how you are tired of doing this but it may be my future unless the uro has other options.

I appreciate your feedback and best to you going forward,

Patrick

Patrick,

What is the difference between self cathing and having a prostate procedure done ? They both allow you to get more out and retain less, with less straining and stretching. Over time they both can rehabilitate your bladder. You can also do a combination of both, probably needing less cathing than before a procedure.

The doctors don't like to do a prostate procedure on someone with a compromised bladder, because right after the procedure their flow rate and retention will still be bad, and they have to chalk up the procedure as a failure. It makes their records look bad. In reality though the procedure will allow better flow with less straining and stretching, which will rehabilitate the bladder over time, like cathing. The patients rarely report back to the doctor about their improvement over time, which could be a year or more.

There are several people on this sight who have reported on this phenomena. Steven05114 for example, after Rezum, had a retention over 150ml . After about 8 months it slowly dropped to below 100 ml, most likely because of bladder recovery.

Thomas

Thomas,

That's a very good question. The problem is that that not every bladder can be rehabbed to the extent that one can fully empty their bladder naturally, even with surgery. Also, there is no exact science, or studies, which can predict which bladders will rehab to that extent and which will not.

So the case for CIC before prostate reduction surgery, is why subject yourself to a surgery and all the potential side effects, if you don't know if your bladder will ever be rehabbed enough to benefit from a prostate reduction surgery?

Also, let's say you do the prostate reduction surgery first on a very stretched bladder. How does the surgery help rehab the bladder? You will still have to self cath in order to empty if fully. That said, there could be some benefit of surgery first in marginal cases.

But since this is a CIC thread, and since I'm an advocate of CIC, I still think that at the present time, CIC is still the best choice for many of us, stretched bladders or not, who do not want to risk retro ejaculation or some of the other side effects of surgeries.

Jim

Thanks, guys, this is exactly the type of conversation that is most helpful before I hear my options from the uro on Friday. FWIW, the nurse that performed my urodynamic testing recommended to go the CIC route IF the uro offered it. When I looked at her questioningly, she said "If it was my father, that's what I would recommend."

Admittedly, it is a daunting prospect but seems to be the consensus here. Any additional feedback is most welcomed.

Patrick

Patrick, Sometimes the nurses know better than the doctors. They have less invested in the type of treatment and perhaps more in the patient. But in the end, it's your decision, not the the nurses, doctors or anyone here. All I can say is that you can always undue CIC and do a surgery, but you can't undo a surgery and any potential side effects. That said, if you decide the CIC route, give it a few months because with some of us, myself included, the first month or so is not easy, but after the body (and mind) get used to it, it can become very routine and not only not alter QOL but enhance it. CIC puts you in control. Certainly not advising what I do, but I haven't seen a uro in over two years other than a few emails when I thought I might have a UTI. Turned out it wasn't symptomatic enough to treat and went away on its own.

Jim

Jim, Yes, as my own #1 health advocate, I realize the decision will be mine, but the collective experience and wisdom from others like you who have traveled this path will be of invaluable help in making an informed decision.

Thanks for your continued support!

Patrick

Hi Jim,

what symptoms did you have when you thought you had UTI?

I did self cat only a few times.

in two days after i did it the last time, my urine became very foamy and very cloudy.

My body temperature was 100 and I had urge to urinate every hour.

Here are some numbers from my urine test

Hemoglobin,ur,ql

Your value

LARGE mg/dL

Standard range

NEGATIVE mg/dL

LEUKOCYTE ESTERASE, UA

Your value

LARGE Leu/ul

Standard range

NEGATIVE Leu/ul

Appearance, urine

Your value

CLOUDY

Standard range

CLEAR

Protein, UA

Your value

100 mg/dL

Standard range

0 - 29 mg/dL

All these numbers indicate i am having UTI

I was prescribed antibiotics, and took one pill.

Then I got another test result

Urine culture result

Your value

Final Report

No growth at 24 hours.

So I have no infection, yet my urine is still very cloudy, very foamy , looks as soap, and sometimes bloody.

My prostate has a median lobe. Is it possible that it could get hurt, when I insert a cat?

Thank you.

Hi Alex,

Needless to say keep in mind that I'm not a doctor and even if I was a doctor, decisions should be made only by someone familiar with your entire medical history.

That said, positive leucocytes (as well as trace blood ,positive nitrities and even some positive cultures) are quite normal in those who self cath, and therefore should not be treated with antibiotics UNLESS one is symptomatic. The issue of how to define "symptomatic" can vary from doctor to doctor, case to case, and here is where going to a urologist well versed in CIC comes in handy. Your symptoms may or may not have warranted treatment with antibiotics. (Missing from report are nitrites).

If I had to guess, and especially since you just started CIC if I read things correctly, the doctor jumped the gun with antibiotics, but again, I'm not on the ground with your full medical history, etc. Best advice again, is to find a uro knowledgeable about CIC, which not all are.

As to myself, one recent example. A few days ago I started having some burning during natural voids. Instead of taking antibiotics I increased my hydration and today things seem almost normal. Should it have gotten worse, or if it continues, I would have had a culture and/or called my uro to discuss antibiotics.

Jim

Hello Patrick.

I had around 1700 mls dained on a visit to the hospital here in the UK. That was back in April of 2019.

I had turp in June of 2019. Between April and my operation I was cicing five times a day.After the turp (long story short) I still had to cic. I thought my life was over. The only way I could pee at times, was sitting and straining. I could do small natural voids which I found improved towards the end of most days. Slowly but surely my natural voids imroved. Strangely (for me) it was when I had drank whisky or a few beers and was so relaxed that I didnt worry to much about over exerting my bladder again. I think one reason I was not voiding more naturally was that I wasnt giving my bladder a good enough work out, and testing what a bladder ca actually pt up with..(all within reason & only a theory) .

One day I just could not push the speedi cath past my bladder neck, & I was too nervous to keep trying. So I put up with (by then) having to sit and strain or peeing many times every 24 hours. Things were improving still more however.

Today I can go four hours wihout feeling the need to pee and then when I do I can void 300mls over two pees close together.

I can only guess that my bladder is almost empty as when I press on it I feel very limited urge. Yet before voiding naturally I get strong urges. So I asume my bladder is giving off mostly good signals.

Today I can sleep through the night at times or maybe get up once or twice (max) for a pee.

Today about seven months after my turp operation I feel 90% better.

Thanks for your response and happy to hear things have improved and are looking up for you! I especially like your beer and whiskey therapy...maybe I'll give that a try!

I have been CICing 6x/day for 3 months in hopes of rehabbing my bladder enough to void naturally without the need for surgery as others here have done. I have become habituated to it as it takes me less time than flossing my teeth, so unless it becomes problematic for me as it did for you, I am ready for the long haul and will keep my fingers crossed that one day I will have a good natural pee!

Cheers to you, Mate...think I'll go have that whiskey!

Patrick

Gin,

Interesting story but hard to tell how much of your recovery came from CIC, your straining, or just a delayed reaction fro the TURP.

As to the straining, a big word of caution. Regardless of any perceived results, training and pushing can cause back pressure which in turn can cause hydronephrosis (excess fluid in the kidney). This can become serious and the damage can extend far beyond your prostate. I ended up with hydronephrosis from my straining and pushing prior to CIC. It resolved within a month of CIC. The test for hydronephrosis is a bladder/kidney ultrasound.

Have you checked your post void residual (PVR) at your doctors since the TURP? If not, you might want to check at least every 6 months to make sure that your bladder is as empty as you think. Another way of checking is with the catheter. Just void naturally and self cath. What comes out is your PVR.

Jim

Just a couple of thoughts. Straining is very bad because it causes fibrosis of the bladder muscle tissue (detrusors). This is similar to the way you build up body muscles by straining to lift weights. The more "muscled" the detrusors become the more they lose their elasticity and the more difficult it becomes to contract and expel pee. So more straining leads to more fibrosis (trabeculation) of the bladder muscle which leads to more fibrosis until the bladder muscle is rigid and the pee backs up into the kidneys and game over. So it is really important not to push or strain.

CIC gives the bladder muscle a chance to regenerate the muscle cell mitochondria which are responsible for the energy to contract the bladder muscle. Given enough rest by CIC the bladder muscle can get back some of its elasticity and overcoe the fibrosis which never goes away. That is what I did and others and which jimjames pioneered.

Regarding getting the catheter through the bladder neck I used to have that problem. I fixed it by making sure that by the time the catheter was at the prostate during insertion I was pushing UP very very gently on the catheter. So at that point the funnel of the catheter was pointing straight down into the toilet with my my fingers pushing up gently and slowly. After that I never had a problem. Howard

Howard,

Well said but I'm not convinced fibrosis cannot be reversed. I can't say if simply decompressing and resting the bladder can reverse fibrosis, but even if not, there is research going on in fibrosis reversal through other means.

Hopefully, some of this research will be directed toward the bladder but how much attention it will get is in question as it will be competing against the big business of surgical procedures.

As to the straining, I agree that this is what gets up into trouble or that trouble gets us into straining 😃 That said, after a year or so of bladder rehab, I did start challenging my detrussors more on an intermittent basis. Using the gym analogy, I had my hard days and my easy days. My hard weeks and my easy weeks. I describe it more in detail in my "on/off" thread.

One question, could you clarify a little what you mean about "pushing UP". We all have our tricks and tips get by the prostate and it's great to share the with others.

Jim

Thanks Jim.

I should have said, that I do not now strain so much at all. It was the early days around three months ago I did & admit I was uncertain if I shold be doing that so much.... Now I pee and give a gentle nudge, with my abdominal ? muscles. But things have improved so very much. that although Im sure I do not empty my bladder totally first time around, after the second pee (and ocassionally third )I feel much better. I sometimes lie down and press the bladder area and can tell if there is some volume left, or if near empty.. I cannot prove it but having cathed for nigh on five months, 5x a day, and from personal experience I feel reassured that my system is working much better. even if not perfect.

I now pee quite strongly & if I leave it for a few hours until I feel a really strong urge it seems to me that my bladder voids itself quicker and with more ease. Maybe its the larger volume. (Im guessing 400 mls maybe 500mls) that gets the velocity going and the final result is better. Also less dribbles & at times hardly a need to wipe with tissue etc...

I do understand your point about checking with a cath sometimes would be best, but even though I did it for 5 months or so, going back in now after the last time when I couldnt get past the bladder neck, makes me nervous and because I feel so much better psychologically and fitter too. (I fast walk around 20 mile per week.). I will throw a little caution to the wind and follow my gut instincts...

The area of my lower torso covering the bladder is noticably flatter now. I believe the bladder has toned some what, back to what it should be.

Back in April of last year there was a large bulge mid right of my torso, leading down to lower middle of my torso, and the surgeon told me (when I asked him what is it.??) he said It is your bladder.!(in a slightly raised voice)

At that time probably around 1.5 ltrs full.

My opinion and that is all it is, is that 12 months wil be needed before I can properly judge the final result of my turp surgery, but I think the outcome for me at least is a positive one and I wish any and all those who decide on any type of surgery, or not, all the very best !!