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

Medicare Part C is Medicare Advantage. M.A. are plans being pushed by the Insurance giants and others. It is not actually Medicare but rather private insurance. They use your medicare to "backstop" themselves but, once your reach your limit on the policy can still deny you care and make more profit. Right now, you may get some extra things that you don't get with standard medicare such as eyeglasses, hearing aids, and things like that. They've already gotten about 25% of seniors to go for or to switch to these plans. As soon as they get enough they will try to end medicare as we know it.

Hi, Patrick,

I signed up for Medicare A and B this summer for the first time, and my insurance guy told me Plan F is being phased out. I went with Plan G, which is very similar. I had a $185 deductible which I've already met. My urologist set me up with Byram Healthcare for my catheters. He gave me some samples, but I also received samples from Coloplast, Lo-Fric and a couple of others.

Stebrunner

HI STebrunner,

Sounds like you just became eligible for Medicare? From what I Googled yesterday, if you already have a Plan F, you can "generally keep it", whatever that means. Not sure what the difference is between Plans F and G, but hoping my Plan F remains intact.

Thanks for your continued support!

Patrick

I looked into Medicare Advantage plans a while back but was advised that I would lose my Plan F Medigap plan if I switched, so I didn't as the Plan F pays for all copays and deductibles.

I get a bit nervous with the talk of ending Medicare and Social Security, but seems to me it would be political suicide to do so. Let's hope better judgment prevails. Health care should not be based on profit margins IMHO.

Patrick

The main difference between Plan F and Plan G is that F covers the yearly $185 deductable for Part B. My older brother has Plan G. It's a little less money than F per month. At this point with the deductable only being $185 a year, its probably better for most of us to go with G. I have Plan N which is significantly less money per month but doesn't pay for the yearly Part B deductable and also doesn't pay for treatment or specialists that charge more than medicare allows. Part F pays for these "overages" that some doctors and specialists will charge because they don't think they're being compensated enough for their work by medicare. IMO - America needs to follow the rest of the industrialized world and make health care non-profit. Not for doctors, obviously, but for insurance, pharmaceuticals, & hospital chain CEOs. Figures don't lie, but liars figure and the reason our health care system is so complicated is because of just that.

Well done Patrick. i have been going for almost 3 years and have found the physical process to be virtually pain free. My issues were more about infection during the first year, however have now resolved this using highly diluted Chlorohex (a fantastic antiseptic which is used in hundreds of products).

Jim has always encouraged me to up frequency, exactly as you have suggested. i do struggle with this due to working etc, however it remains my goal.

As for acupuncture, i would be very interested in findings.

Best wishes. Tim in UK

Tim, thanks for your reply. I also find the process virtually painless, even from the start, and credit my CIC nurse for the excellent coaching and onsite visit. The angst from reading this thread about problems some of us have had adjusting to this change went away immediately during and after my first CIC... I was ready to do a Snoopy happy dance I was so relieved!

Wasn't looking forward to upping my frequency but knew it was coming as most of my PVRs were over 500 ml and some over 1200 but those numbers have come down with the 6/day routine and hope to share Jim's experience in rehabbing the bladder while avoiding surgery.

Lastly, I have been anal about emphasizing the "CLEAN" in CIC to hopefully avoid the UTI demon. Curious how many of us use disposable paper towels after a good handwash. I am using normal bath towels now but have read one-time use towels are the best. Have been looking on Amazon for the best product and would be interested in what others are using in this regard. Would like to avoid adding more to the landfill if possible.

Peace to all,during this Holiday season.

Patrick

Patrick,

If your using pre-lubed catheters your hands don't have to be super clean because you never touch the catheter. Washing them with antibacterial soap and drying with a paper towel is what I do. I also use Provadone Iodine (betadine) to clean the penis tip, and insert some in the urethra with a Qtip.

If you use the red rubber cathters with external lube, you have to touch the catheter to insert it because it is so flexible. I sometimes wash my hands first with antibacterial soap and then with alcohol to kill germs. The alcohol can be dried by swinging your hands in a forward backward motion about 10 reps. I have also dried water off my hands by swinging 40 to 50 reps. You don't have to touch a towel that way.

Thomas

I've been using the dive technique, never touching the catheter or the head of my penis with my hands. Ive been cathing for 2 years now with no problems or UTIs.

Never used a q tip, but I do open the meatus a little when I swab with providone iodine to get a little inside. I have a bottle a home that I just squirt on a piece of toilet paper or preferably a gauze pad. When outside, I have the providone iodine in a small squirt bottle. When in a pinch, I just use hand sanitizer which can sting a little but does the job. Soap and water would be another substitute. FYI for those who haven't used providone iodine -- it can stain things, so either be very careful or use an alternative.

Jim

I used to use speedicath hydrophilic and never used the little sticky tab on the back but using the dropin technique it really helps to stick the sheath on the wall. They don't stick to everything but to most things. I'm using cure hydrophilic now and they have the wall sticker as well.

I have been using the SpeediCath with the "nosedive" technique for 3 months now with no problems. I do not stick the sheath on the wall as my cath nurse taught me to lay it horizontally on the toilet tank after opening just before use. Not sure I see the benefit of attaching to wall? When away from home I use the Speedicath compact which works very well. If they were covered by Medicare I would use them exclusively but they are pricey at $5 each.

I use the Speedicath hydrophilic coude catheters as well (14fr). I always hang them on the wall and then open them about one-quarter of the way and then drop in a little gel lube at the top which helps to coat the catheter as I slowly pull it out. The gel works with the hydrophilic coating to let the catheter slide in much easier for me through my huge prostate (280cc) . I am now at 5000 + CICs and never had a problem, at home or away or 40 months.

Howard,

You are obviously a CIC veteran at 5,000+...curious what "gel lube" you use as I would like to give it a try although my SpeediCath 14FR standard caths slide in pretty easy as is.

Also curious if you are considering a procedure in the future to replace your CIC regimen or do you plan on self-cathing indefinitely?

Patrick

Hello Patrick,

I use SurgiLube from the local pharmacy. It was originally recommended to me by jimjames 4 years ago when I started and it has worked great. I have 2 huge sidelobes (but no median lobe) which make getting the catheter through the prostate very difficult. The gel lube helps a lot along with the coude tip even though people will say not to mix hydrophilics with gel.

I had a PAE done 4 years ago but it did not help at all. At the time I was faced with a robotic prostatectomy or holep given my size. I researched my options and found jimjames and with his help learned CIC. It has rehabed my bladder (and kidneys) to the point where I have a good NV during the day ( 200ml or so) and my catheter void is also about 200 ml. I do CIC 4 times/day.

At 70 I am comfortable with CIC and have fit it into my lifestyle. I get one UTI/year but other than that no issues. So I am not keen on trying another medical procedure which could ruin my life. I am always hopeful some new , noninvasive magic bullet will come along but so far I don't see anything. Good luck.

Thanks Howard,

I am also 70 and in a similar situation, although I am not able to void at all without a catheter. I've only been using CIC for 3 months and am hoping I can rehab my bladder enough to void on my own as you and others here have done, avoiding the intrusive procedures we are both leery of.

Curious how you treat your UTIs in the event I get them in the future. Seems like I remember reading something about "colonization" while researching CIC on this forum. Do you take antibiotics to treat your UTIs? I remember JimJames talking about colonization and avoiding antibiotics; maybe he can chime in here? I occasionally have a slight discharge and wonder if it's the first sign of a UTI but it is usually gone by my next CIC. Sound familiar to anyone?

Patrick

Keith,

The glue on the speedicath package does not stick well. Lately I have been propping the package up vertically on top of the bathroom vanity, against the self just under the mirror, and then slide one side of the open package under an electric toothbrush charger. It seems to hold it steady while I pull out the cath.

Patrick's method of laying the package on a flat horizontal surface sounds interesting, I am going to try it.It may distribute the lube inside more evenly.

Thomas

****Patrick's method of laying the package on a flat horizontal surface sounds interesting, I am going to try it. It may distribute the lube inside more evenly.

I recently tried a sample of the Convatec Gentlecath after it was recommended here. Unlike my "go-to" SpeediCath, it has a "water sachet" which you burst and lay horizontally for 15 seconds before opening and using. No doubt this is to distribute the lubrication evenly before use.

FWIW, the Gentlcath will not replace the SpeediCath which remains my favorite after trying several others. I also shake the SpeediCath sheath several times to distribute the liquid before laying it flat.

Hi Patrick,

I would get a UTI when I am not careful about washing my hands first. Currently I have not had one since last May. When they do come on there is no mistaking a UTI - intense burning, spasmotic peeing and lots of pain. I take Amoxicilin which works really fast and no side effects. Colonization is always present as jimjames has discussed. But usually we do not have any symptoms until the UTI starts for real. When I suspect I have one I use my 10 parameter dip stick which will show leukocytes, protein, blood etc which are indicative of UTIs. You can but them at amazon.

If it looks bad I take in a pee sample to the lab and if it grows anything (CNS test) then I get a prescription for the antibiotic.

I have never had any problem sticking my speedicath to a wall. You just have to press hard. It does have to be a dry smooth surface.

When I first went into full retention nearly 4 years ago I took prednisone to buy me some time to figure out what to do. Since I do not have any physical blockages if the bladder neck like a median lobe, the prednisone reduced the inflammation that causes BPH and allowed me to pee. But prednisone is a very dangerous drug as it suppresses the immune system so can only be used for a short while. At that time I had a cystoscopy which showed severe muscling of the bladder wall (trabeculation). Also one kidney was showing hydronephrosis (ultrasound). I had another cystoscopy 6 monts ago and it showed a nice smooth bladder wall adn no marks on the bladder from CICing so it really do as jimjames had advertised back then. Also my kidneys are ok. Further I now CIC faster than it takes to floss my teeth, another promise from jimajames. Good luck. Howard

Hi Patrick, Howard and others,

Glad to see things are going reasonably well with CIC. A couple of comments on both my situation and some recent posts here.

My CIC frequency has increased over the past year or two, up to 4-6 times a day, probably due to some new tachycardia issues and less exercise. The tachycardia's often result in my kidneys unloading much quicker than normally. So while before I would void when the bladder was around 400ml, now it often goes over that before I know it. That said, CIC is still as easy as ever, and no UTIs for over a year and I empty pretty much down to under 100ml, often under 50ml. My natural voids are usually 300ml or more.

I was getting a slight soreness a month or so ago, and I just went back to basics, which is taking it nice, easy and gentle rather than racing through things. That and hesitating a moment at the external spincter and at the same time sucking in my butt. End result is that the catheter slides by the prostate a lot easier now and no soreness.

As to the stick-on-tab with the Speedicath's, I don't think I ever used them other than the first couple of times years ago and I think they fell off the wall!

What I do is just open the packet and pull out the catheter with my right hand. I then put the empty packet either on a nearby shelf or sometimes the sink. Then I do the "nose dive" often without washing my hands, although I really should. The shelf sometimes has an extra toilet paper roll so I just stick it right in the middle so it points up. When I'm finished, I just put the catheter back in the package and throw it away. Also on the shelf is a bottle of providone idodine which I turn over and wet a small piece of gauze and tab it on the head of my penis with meatus held open with my left hand. When I don't have the gauze around -- most of the time -- I just use toilet paper. Economical

and easy, with the caveat that providone iodine can stain at least temporarily.

I rarely have to cath outside the house, so really don't have a specific routine. I used to carry the catheters in a back pack to keep them straight, but now I'll just fold them over once and stick them in a jacket pocket. The speedicath's don't unfold as well as some others, but if you take your time, and watch the coude orientation as it goes in, it will find it's way in correctly. If you don't use a coude tip shouldn't be any problem folding them at all. If you do want to keep them straight, then a back pack or similar works or there's the sticking them in your socks trip and covering them with your pants.

Like I said, no UTIs and could count the number of dipsticks I've used over the past couple of years on one hand. When I did them more often, I liked the Siemens Multistix SG which may be under different names now. If you CIC, colonization (asymptomatic bacturia) is very common, meaning the dipstick usually showing positive leucocytes and blood and sometimes even positive nitrites. The convention I've learned from doctors, research and experience is not to treat colonization with antibiotics unless symptomatic and that can even include a positive culture -- but why get a culture if symptomatic? There is a gray area in there, so best to work with a sophisticated urologist familiar with CIC.

Not that up to date on any new procedures. There were a lot of Rezum's I remember, and Aquablation was just coming out, and of course, FLA, which seems to get more press here than the numbers of patients and studies might warrant. I'd still like to see some study data on FLA -- wasn't it promised a year ago? Conceptually, it's very appealing but by last count the results have been mixed and not significantly better than a number of other procedures that insurance covers. I'm not for or against FLA, just calling it as I see it.

Personally, CIC has become such a routine and non issue with me, that I am not in the least tempted by any current procedure, and not sure I'd be tempted by anything new unless it had zero downsides, which usually isn't the case. Or, unless CIC stopped working, but so far so good.

But that's me, and I understand CIC doesn't work for everyone although I wish more people would at least give it a try before jumping from drugs to surgery.

Jim

CORRECTION: Meant to say "...but why get a culture if ASYMPTOMATIC..."

Thanks for checking in and providing your most informative update!

If I understood your advice re UTIs, no use in doing anything unless there are symptoms, and then consult with urologist? I have an intermittent discharge from my penis, but no pain, fever, cloudy or smelly urine or other symptoms of UTI and wonder if I am allergic to the MEDNAPs I use to wipe my penis before insertion, the KY jelly I use to treat dryness around my urethral opening, or the medicated powder I use before my bike rides?

I am with you on waiting for a procedure without permanent side effects as long as CIC is working. I appreciate the information you have shared on this forum which helped me greatly in going to my urologist well-informed with a list of questions regarding my future treatment. Fortunately, he supports CIC and is not pushing me into a procedure with little chance of success and a lifetime of side effects.

Patrick

Hey Jim

Glad all is doing well for you. Your the man

God Bless....Ken

Hi jim - It is great to be able to thank you again for all you did for me. My urologist was blown away at my recent cystoscopy which showed almost no trabeculation and a nice clean bladder wall and no evidence of the 5000+ catheters having damaged the bladder wall opposite the point of entry. While he had to navigate the scope around my huge prostate pushing up into the bladder he just told me to keep doing what I am doing. Also my hydronephrosis from 4 years ago was gone.

During the day my NVs are 150 to 300 cc with corresponding CIC values of 200 to 250cc. I sleep well through the night but when I awake at 6 am I am always in retention and cath anywhere from 600 to 800 cc! Yet my bladder elasticity returns to a good NV a few hours later.

I find that if I have to hold the pee in for more than 30 minutes I usually get retention but if I can empty within that period then my NV is quite good with good pressure.

I have only used Speedicath coude hydrophilics (14fr) all these years. They just work so well for me. I've never had even one fall of the wall. I just press it on and then when I pull the tab down I make sure to press against the inside tab on the wall with my other hand. In fact I usually have trouble getting it off the wall when done!

I've looked at all the available procedures out there but none excite me - at least for my large prostate. I always hope some new injectible solution will come available but so far no magic bullet.

I wish you well and again thanks so much for all your patience and instruction over the years. I hope I have also helped other men avoid needless surgeries with CIC. Howard

Howard,

Sounds like CIC has done you well, congrats!

Curious about how you are able to NV during the day but regress to retention at night...what does your uro say about this? Will this eventually resolve so you can stop CIC?

And when you say your NVs are 150 to 300 cc with corresponding CIC values of 200 to 250cc, are those CC values right after a NV? Do you cath after every NV?

Hope this isn't too many questions but it seems we have similar conditions with you being a few steps ahead.

Patrick

Good questions, Patrick.

Patrick,

That's the general principle, however you should really work with your urologist and keep them in the loop. As far as the discharge is concerned, definitely bring it to your doctor's attention. He may want to culture it or have some other advice.

Jim

Jim,

You mean regressing into retention at night and CIC after each NV and evolving out of that is the general principle? My uro has me on 4 month recall so I will see him in April. Other than the occasional discharge, I am doing fine with no other issues. I will call him if I start having symptoms of pain, fever, etc.

Patrick

Hi Patrick - sorry for the delay in getting back to you.

I have a lot of NVs during the day and they are usually between 150 and 300 cc with good pressure. I don't CIC after each one. My CIC schedule is as follows: when I awake, usually at 6 am. Then one around mid-day; then one around 6 pm and then one before bed at 11pm. I do NVs before each one and except for the 6 am CIC my NVs match the CIC volumes so I am emptying about half my bladder during the day. My totals are around 400 to 500cc.

I sleep through the night but then my bladder is full in the morning and I cannot pee at all. Probably I should get up at 3am and empty but I don't. So I just CIC and get a really big result. This morning it was 900 cc!! But then by 9 am I had very good NVs.

My urologist says the elasticity in my bladder muscle wall ( the detrusors) is very good so it is just like a balloon that expands way out and then emptys. He said the main thing is to watch my kidney functions to make sure the kidneys are not getting stressed by fluid backing up in the bladder at night. For this he checks my serum BUN/creatinine levels every 6 months and does a kidney u/s once a year. So far so good!

I find it all perfectly manageable but we are all different. I just don't see doing any invasive procedures at this time that could upset the status quo. Take care. Howard

Howard,

Thanks for your most helpful response. One more question. Were you able to NV before starting CIC? If not, how long were you doing CIC before you were able to NV? And how long have you been doing CIC total?

I am hoping my first NV will come sooner than later so I know I have at least turned the corner on this adventure! As I'm only 3 months in, am trying to be patient.

Patrick

The general principle I was referring was in regard to only treating symptomatic utis

Jim

Very interesting Howard. Reading your routine is almost a quote for quote of my own. Especially the first NV in the morning when i sometimes struggle to get going.

I also wake up needing a wee but often struggle to go. no doubt holding on for too long during day and night is preventing the bladder from building up strength. Jim has always said 300-400ml max. Mine are normally around 500ml.

You have given me the urge (for use of a better word) to up cath frequency. I will also log void volumes to monitor any improvements. Tim

Hi Patrick,

That is a good point. I have had BPH since I was 50. I think I got it initially from an unnecessary blind TRUS biopsy when PSA tests first became popular and my PSA was 0.9 !! (It was drawn right after sex). The urologist then did a very messy and unclean needle biopsy that left me with acute prostatitis which went untreated and I believe became BPH. One reason I think this, among many is that my BPH is purely inflammatory (autoimmune). There are no bladder neck obstructions.

For 15 years I took alpha blockers and avodart to help me. I tried a PAE back in 2016 but it did nothing to help. I always had a reasonable NV through this time but as it got worse I got less and less sleep as I could not void fully. I called it "peeing off the top" as I would pee out 100ml only to have it fill back up in an hour.

Finally in the Fall of 2016 i went into complete retention. It was very scary. My urologist here wanted to remove my prostate in an open simple prostatectomy. I resisted that and tried to research options. To still pee, I remembered that when I once took prednisone for my asthma my BPH totally cleared up for a week or so. It was great and confirmed my thoughts about my case being all inflammation. I still had prednisone available so I started taking it, Within a few hours I could start to pee again and then sat down in front of google and desperately looked for options. That was when I found this forum and jimjames. He was and continues to be a lifeline for me. I went to the nearest medical supply store and bought a box of catheters. I had no idea what I was doing but I was determined to make it work which I did with jimjames guidance.

Within a few months I was getting my Speedicath supply from Medicare and the rest is history! I started to get NVs back after about 6 months of CIC 4 times/day. I follow jimjames rule of 400cc total and if it is more then I add more catheters. I've done as much as 8 per day. Howard

Yes please do that. I still keep a daily log of all my CIC volumes. I note the time and the NV before I CIC and then the CIC volume. I do not log the NVs that I do by themselves. It really is useful to look back and see what is happening. I try to stay within the 400 rule but to be honest it is more like the 500 rule.

If my bladder fills up to the point that I am holding in a definite urge to pee for more than 30 minutes then I go into retention so I have to watch that ( and my drinking). I think that is what happens at night because I resist getting up at 3 am when my bladder calls me. It is weird though because when I do go back to sleep I have bad nightmares likely caused by the discomfort so I do try and get up and CIC. I used to suffer from nocturia problems but I solved that by eating a small bag of salted potato chips before bed!

Within a few months I was getting my Speedicath supply from Medicare and the rest is history! I started to get NVs back after about 6 months of CIC 4 times/day. I follow jimjames rule of 400cc total and if it is more then I add more catheters. I've done as much as 8 per day

So it took about 6 months of CIC to get back to NV...that is very helpful, thank you! I am only 3 months in, but urges are getting stronger and I am hoping to break the ice soon! With 6x/day, most of my PVRs are under 500 ml with the exception of my nooner after a couple cups of coffee, or if I should do a happy hour and have a few beers. We still should enjoy life, no?

Patrick

Hi Patrick - I think as you get more comfortable with CIC that you should definitely aim to be under 400 cc each time, especially as all your volume is currently coming from retention and no NVs. If you read jimjames initial story that started this long thread he was very aggressive with CIC at the start, I think even up to 10 times/day. Really whatever it takes to stay under 400. I recall setting my alarm clock in the first 6 months so I would awake at 3 am and do CIC just to make sure my totals stayed under 400 cc. It really is a magic number - probably one of the Universal Constants!! Then as you start to NV you can cut back. This is why I added some lube to my catheters - since I was doing them so often I wanted to make sure there would not be any irritation. The more the bladder can stay near empty, the better chance it has to re-develop its elasticity and overcome the fibrosis tissues. It gets back to the mitochondria but that;s another story. Howard

Howard,

I get it about 400 being a "magic" number. But I am at the mercy of my uro who has prescribed 6x/day and my supplier will not send more than what he prescribes. I will discuss this with him at my next visit but I know he has a concern about trauma to my urethra.

I do use an app on my phone called CathNow that reminds me when it's "time to go" and I set an alarm on my phone to wake at 4 am to stay on a 4 hour schedule. Maybe a good solution would be to increase caths during high PVR periods and decrease during low PVR periods?

Patrick

Patrick,

You can cut down on the amount of liquid you drink so that you don't go over 400ml while cathing 6 times per day. The other thing you could do is order some of the red rubber/latex type re-usable catheters, and wash them after each use. I usually wash them with anti bacterial soap including the center. I also wipe them down with alcohol before use. It is useful dry them on a hanger made with a piece of wood and eyscrews.

Yes, I have been cutting back on the liquid intake but also need to stay well-hydrated as dehydration triggers AFib episodes, so I'm playing a balancing act and looking for the "sweet spot" to stay hydrated while keeping bladder volume below 400ml.

Considering 5300ml was drained at the ER when this adventure began last September, no doubt my bladder is feeling relief and hopefully being rehabbed with my 6x/day CIC routine. The urges are getting stronger and more frequent and I can feel changes down there, so I think I am headed in the right direction.

Those reusable catheters scare me...I don't think I would try them without my urologist's recommendation. If my PVRs are still high at my next appointment, perhaps he will increase my prescription, but I know he also has a concern about trauma to my urethra, which makes me leery of those red rubber reusables without his approval.

Appreciate your feedback!

Patrick

Hi Patrick,

Let me misidentify the 400ml. It's approximately what a normal bladder will hold before a strong urge to urinate. So nature really doesn't want the bladder to stretch too far beyond that, too much of the time. If the bladder is stetched too far beyond that, too much of the time, it stretches and becomes less efficient and eventually can become almost non functional. I've been there and so have many others here.

So if you want to try to rehab your bladder, this is a good number to shoot for, or more accurately to shoot under. When I was at my most agressive, I tried for 400ml as much as possible, and even threw in a few extra caths from time to time at 300ml or even 200ml. I can't say this was necessary, but I looked at it as a bladder vacation or treat 😃

Of course this may not always be possible or feasible as getting up in the middle of the night to cath may have more downsides than upsides, but that's an individual choice. I also might add that my agressive stage only lasted for maybe six months or so and today I don't measure PVRs very often although I am aware and have a home bladder scanner to keep me honest. A visit to the uro for a bladder scan does the same thing.

I would never tell anyone not to listen to their urologist, but I'm a firm believer in shared medical decision making. So if my urologist, for example, doesn't agree with an approach I suggest, I will talk it over with him. Hopefully, he's the kind of doctor who also believes in shared decision making. Some are, some are not.

I think if you presented to your urologist the idea that you wanted to keep your bladder under 400ml, and why, and that you would also need an rx for more than 6 a day. And keep in mind you probably wouldn't have to cath more than six times a day every day, just now and then. And it wouldn't be forever, just maybe six months or so. Hopefully, he would go along with your plan. If not, you could always find another urologist.

There is also no reason to be scared or reusable red rubber catheters. The infection risk is negligible compared to single use, if you properly follow protocols. To keep it even more sterile, maybe only use the red rubbers at home and not on the road.

That's not saying you will find red rubbers easier to use. They may go in easier, they may go in harder. Only one way to find out as we are all different. You will know soon enough if the red rubber is causing more friction or not. My experience is that you would want to start with a red rubber about a size up from the Speedicath you are using, because they are softer and bend more easily. But the easiest thing would be just to get your uro to write you an rx for more catheters for a month or so and see how that goes. I believe medicare automatically pays for up to 6 a day, but you can get more if your doctor finds it a medical necessity. If your doctor agrees, but for some reason your insurance won't pay for more than 6, there are a few sites online where you can purchase catheters without an rx but you have to look around.

How much water are you drinking? That could be another factor, both the amount of water you take in and when you take it in.

I'll end by saying that you're in the beginning of your rehab phase and even if your PVRs are more than 400ml, you're probably going to still make progress compared to what you've been holding in prior to CIC. I didn't get really aggressive with frequency until after the one year mark. So probably no rush, depending on how much over 400ml you are and how often you're over that number.

Jim

Correction: I meant to say "demystify" not "misidentify" in the first sentence of my previous post.

I should add that there have been at least one study showing lower infection rates with single use hydrophilics versus reusable catheters but my opinion is that a lot had to do with how careful the user is. So again, my opinion, if you use red rubbers only at home, and you set up some sterile procedures, I don't think you would find any increased risk of infection.

I started with red rubbers but switched to Speedicaths after about a month. I found the Speedicaths much easier but that's just me. I am tempted to go back and try red rubbers again to see if they still bother me. They might come in handy some day if I decided to do some extended traveling and could not get hold of my favorite and trusted Speedicaths, as one red rubber could probably last you a few weeks if needed.

Jim

Why not try a small bag of salted potato chips as long as your BP is ok? The salt will help reduce fluid release into the bladder.

Hi Jim,

Thanks for the "demystification" on the 400ml target. Yes, why not call it a target as that is what I will shoot for. Like any target, sometimes you hit it, sometimes you don't.

You asked about my water intake. Probably too much. Since I am an avid cyclist in Florida, my MO is to take two 24 oz water bottles on my 25-30 mile daily bike rides. Being in Florida where the heat is high, especially in summer, it didn't take more than one bout of dehydration out on the trail to learn to stay adequately hydrated. Also, because I have AFib and knowing dehydration is a trigger for episodes, I probably over-reacted by increasing my liquid intake, especially on my bike rides. So I take over 1,400mls of water and Gatorade on every ride. Bingo.

However, only in the hottest summer months do I return home with both bottles empty. And in the hottest of days, I sweat a good amount of that hydration away, which limits impact to my bladder as I find my largest PVRs are not after bike rides, but after my morning two cups of coffee and morning meds which I take with a full glass of water. And did I mention the post-ride brewski? The barley and hops never taste better than after a spirited bike ride! 8)

So yes, there is room for some behavior modification on my part to cut back on the liquid intake, but we are creatures of habit are we not? OK, I will try to cut back to one cuppa in the morning and see how that goes.

Also, I will discuss increasing my prescription with my uro whom I perceive to be a reasonable man and seems willing to work with me. On my first visit after miserably flunking my urodymamics test, he admitted he was not looking forward to breaking the bad news to me but was pleasantly surprised at the list of questions I had brought, my desire to begin CIC and my positive mental attitude, thanks in great part to my reading 50+ pages of comments to your previous "CIC AS AN ALTERNATIVE" thread which was very enlightening. Thank you again! I very much appreciate the continuing support I find on this forum!

Patrick

Thanks Howard,

Although I am on BP meds and limit my salt intake, maybe Ill give that a try! My wife always hides the chips on me!

Patrick

Chips before bed might reduce your nightime output but dont think it will reduce your 24 hour output. Given your on bp meds maybe not the best approach not to mention the fat.

What is your normal 24 hour output and input? If you dont know you might want to do a void/intake log for a few days. Write down time and volumes of each void and all fluids.

Jim

Hi Patrick

Regarding fluid intake, I just use my pee color as a guide. A normal pee should look light yellow or straw color so if it is too dark then I increase my fluid intake and if it is too clear, like water then I reduce my fluid intake. Almost all my fluid intake is spring water except for some coffee in the morning.

You may have mentioned this already but I was wondering if you ever had a cystoscopy ( with a flexible, not rigid scope)? This might show up the source of your blockage like a urethral stricture, massive prostate side lobes (my case), a large median lobe blocking the bladder neck as well as stones, bladder wall trabeculation, diverticula as well as checking for any signs of cancer. It is a simple easy test and well worth it. Howard

Hi Jim - yes I've been following your advice on that for quite a while. On average, my daily void volumes (NVs + CICs) is about 3000 to 3500 ml. My daily intake from water ( and some coffee in the morning) is about 2000 ml. To that should be added fluid in foods + cell respiration. I think I am in reasonable fluid balance ( but not in mental balance!).

Since you first mentioned potato chips years ago for nocturia it really has helped me. My BP remains good as well as other physical parameters.

Thanks again for being there to help.

Howard

My nightime output is probably the lowest. In fact, I have been tempted to skip my 4am void and sleep through, and maybe use the extra cath to split my 8-12 am CIC at noon since it is typically the largest.

I kept a void log when I started CIC back in November @4/day but when my uro saw the high PVRs he increased to 6/day and said I can stop the logs until 30 days before my next appt in April. I have been logging once a week but haven't measured input nor was I instructed to. What goes in must come out, no? Anyhow, since increasing to 6/day my PVRs have come down but I still get a few over 400, some as high as 700-1000, usually that nooner after morning coffee, meds and breakfast.

I am trying to be more mindful of my fluid intake but have become habituated to carrying my water bottle everywhere to keep hydrated and avoid AFib episodes. And I have always heard it is good to drink plenty of water to flush out toxins. Maybe I'm overdoing it a bit, so I'll be more vigilant with the logs.

Patrick

Hi Howard,

I agree with your color theory. I can tell immediately what size void I will have by looking at the color as the smaller voids will be darker and the larger ones lighter in color.

And yes I did have a cystoscopy on my first uro visit and he did say my prostate was enlarged, but seemed to be more concerned with my bladder as I recently had 5300mls drained during my ER visit. After seeing the condition of my bladder, he was not surprised that I could not void after removing the Foley. But he did say it was my prostate that caused my urinary retention which had been happening for a long time. I was urinating regularly albeit with a reduced flow (I am 70 and thought this was normal) but had no idea I was carrying around 5 liters of urine! The ER staff could not believe I was not in excruciating pain and said they had drained more than double the amount than any other patient they had ever seen. I had no clue. Yikes.

Good news is, the uro seems to be on board with me rehabbing my bladder with CIC before trying any procedure. (He says "no use expanding the pipe until the pump is working") I hope to surprise him as Jim did by regaining bladder strength enough to NV without any surgical procedure. Fingers crossed.

Patrick

Do you NOW feel the urge to pee when your bladder has 500 or so cc of pee in it? That would be a good sign as a neurogenic bladder, where the nerve signals saying it is time to empty your bladder are not being sent to the brain is another problem. You are very very fortunate to have jimjames to guide you on your rehab. Howard

Usually the urge comes before a larger void. The nurse who did my urodynamics testing said I definitely have nerve damage from my bladder being stretched for so many years, which also probably explains why I wasn't in pain before 5300 mls were drained at the ER.

And yes, I am very grateful for the guidance and experience of JimJames and others here, including you!

Patrick

Patrick,

Input/output logs can come in very handy. All you need is a pyrex beaker from the grocery store and a pen and paper. I might also repeat that you're in the beginning of your journey. While I did start to improve bladder function right after CIC, I soon reached a plateau. The next big jump came after the one year mark. And the most progress was at about the 2 year mark. So keep with it, be patient, and expect ups and downs.

Jim

Howard,

I second you on your statement to Patrick being very very fortunate in having jimjames to guide him on his rehab. Count me in, too! And there must be so many more out there who have benefited, one way or another.

Although I was just at the 800 ml mark, I was progressing very well until I got clobbered by a c-dif encounter. The latter is probably outside jimjames' scope but has taken me 18 months to knock down before I could get back to bladder rehab 100%.

So, Jim, thank you! Kudos where kudos is due. Warm regards and best wishes to all you folks for a great 2020! alan86734.

Thanks Alan and all the best to you as well for 2020.

How did you finally defeat c-dif?

Hi, Howard31850,

c-diff or clostridiodes-difficile, has a rightful place in our colon. The bacterium's poop is particularly toxic but, as long as a happy balance is maintained between all the resident microbiota, all is well.

Then, if our PCP does not have the designation MD after his/her name, then he/she would not have received the two black box warnings issued by the FDA which said, "USE ONLY AS A FINAL RESORT". So an apparent need for a mild, but oh so effective, antibiotic emerges and off we go to the pharmacist clutching our prescription for (usually) 2 week's worth of Cipro or equivalent as the First Step in our regime for treating a very minor infection.

In short, we've fallen into the trap of shooting ants with a .50 caliber machine gun!

c-diff, a natural survivor finds and promptly populates all this new territory. Oh thank you so kindly, my Human Host! The outcome is a lethal accumulation of c-diff poop due solely to overpopulation. Sounds horribly familiar, doesn't it?

I therefor set about consuming just about every formulation of probiotic available plus any nutrients the little dears might need, mainly magnesium and phosphorous. No, I did not resort to taking cultures of another person's feces, but we thought this was so totally gross that we certainly did share a good laugh with staff members of the Radiology Department.

So, Howard, I hope you find this helpful, Warm regards, alan86734.

Jim,

My CIC nurse gave me a measuring device and log that I use...although it doesn't include "input", I can add it. Why is input important?

I am working on patience. Since my bladder was more distended than yours, I expect it may take longer to achieve your results, if ever.

Patrick

Hi Howard. Would you recommend a probiotic or similar on an ongoing basis? .. im wondering if taking these could even reduce the risk of UTI's from CIC?

Great chat guys, really value this forum.

Tim

Hi Tim,

For UTIs a lot of us take D-Mannose 500mg tablets twice a day. You can get it at the pharmacy and it is cheap. I have found it very effective at reducing UTIs. Good luck.

Howard

Hi, Tim,

If I may chip in here. I take 1xday probiotic 4 - 1 broad spectrum capsules and everything O.K. no side effects as far as I am aware.

Best wishes, alan86734.

Howard,

Do you take D-Mannose every day to prevent UTIs or to treat UTIs after you have one, or both? Any idea if it interacts with medications? I checked the interaction checker on Drugs.com but D-Mannose is not recognized.

Patrick

Hi Patrick - I take it as a preventative not to treat UTIs. At that point I take Amoxicillin if needed.

Also as far as I know there is no interaction with other medications or supplements - at least for me and others here.

Thanks Howard,

I have ordered some and will give it a try. So it sounds like you still get UTIs despite taking D-Mannose?

Patrick

Hi Patrick,

I've only had 4 UTIs in almost 4 years. The first one was right away as I was learning and was not careful. Then I had one while travelling and did not wash my hands first. The last 2 were last Spring and I think were really the same one. It happened when I first had a poop in the middle of the night and did not wash my hands before doing CIC as I was very tired.

So I do think D-Mannose has helped create an environment in the bladder which is unfavorable to infections in general but not a panacea for preventing them. There have been other times too I was not careful in washing my hands and I got away with it , so who knows!

And of course it is very very important to clean the meatus well before inserting the catheter. I use a sanitary wipe for that.

Also change your underwear everyday!!

Howard

Patrick,

Be careful when buying supplements. The are not regulated. I have bought some brands of Dmannose that I suspected of being diluted with table sugar. Since Dmannose is a sugar and looks like powdered sugar it is easy to dilute with regular table sugar. It was more grainy in texture, and sweeter than it should have been. "Now" is a company that has good Dmannose in my opinion.

Thomas

Hi Jim you mention povidone iodine. Do you use this every time you CIC? .. also, what strength of P-I do you use, they seem to vary. Does it sting?

I use a 10% solution. Mine come in 16 oz bottles and say "Providone Iodine Prep Solution" but other just say Providone Iodine solution or similar. I just wet a small gauze pad (or piece of toilet paper) with the solution and dab on the open meatus and head of my penis before "dive bombing in". No sting whatsover (for me) as opposed to using for example an alcohol based solution. Only downside is that it can stain if you're not careful but nothing permanent if you clean it up right away. When I'm traveling, I transfer it to smaller bottles. You can find it at most pharmacies and online at places like Amazon.

Jim

Thomas,

Thanks for the heads-up...must be my lucky day...I have already ordered NOW 500 mg. capsules. How many do you take each day? The SUGGESTED USAGE is "3 capsules 1-3 times a day".

Any other suggestions?

Patrick

Howard,

I have been diligent in implementing the CLEAN in CIC. I use an antibacterial soap to wash my hands before and after, as well as a sanitary MED NAP to clean Pete's bald head before the dive bomb! 8)

I am typically anal about personal hygiene so adapting and incorporating CIC into my daily routine has been easy for me. Hopefully the D-Mannose will help keep the UTI bogey man away!

Patrick

Good to hear - one of jimjames' cardinal rules!

I should have also mentioned that I too use NOW from Amazon, going on 3 years w/o any problems.

Parick,

I always buy the Dmannose powder. It is much more cost efficient that way. I mix about a teaspoon into 4 to 6 oz. water. It dissolves easily, and makes a slightly sweet pleasant tasting drink.

Thomas

Thomas,

Is the powder you use the NOW brand? If not, which do you use and do you get it from Amazon?

Patrick