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

But the prostate continues to grow like a weed. It is not just putting off the evil day but making it more difficult for any future procedures.

Derek,

That's a very general statement and not sure how accurate it is. 

While it's true BPH is associated with an enlarged prostate, the size of the prostate is not necessarily associated with how severe symptons are. Your prostate may be bigger than mine but I might have fewer symptons than you. As to "growing like a weed", my prostate has remained the same size for the past three years. 

I see self catherization (CIC) as a viable alternative to today's surgical options. CIC has given me every benefit a surgery could, without any of the side effects. During this time, not only has my prostate not grown, but my bladder has regained a lot of its elasticity and my IPSS (international prostate sympton score) has improved dramatically. 

As to "making it more difficult for any future procedures", I guess you would have to take into account a whole lot of variables including prostate size, shape, growth rate, etc. So far, none of my urologists have raised this concern. Meanwhile, for the past few years, I feel I am enjoying a better quality of life than if I had taken the TURP operation I was offered. I am closely following newer procedures like PAE but right now I'm OK with the devil I know. 

Jim

 

True that size does not always indicate how great the symptoms are but with the size of yours it must do. I believe that PAE also has a size limitation.

Laser surgery is a simple procedure that is basically day surgery and and for most life is back to normal within days. I had PVP in 2006 when my prostate was 75 grams but it soon started to regrow and by 2013 it was 135 grams.

How many Uro's have you been to see over the years and what advice have they offered that you've ignored? To have had BPH for 48 years is no way to live. What is your PSA?  

Jim I think your doing great.  Why do something that you don't need.  I have a urolift done a yeas ago.  My doctor cold not get the scope in my prostate because it was so big.  He never said anything about a turp or laser coring of the prostate.  I would have said no anyway.  I had a urolift done and all was good untill december 2015 Had to have them all tighted because my prostate got smaller.  Who knows why.  But it good for me.  Keep doing what your doing.  Have fun and all you can..Ken

I did not like the significant chance of retro ejaculation with PVP. Over the years, I've probably seen eight or nine uro's and four within the last few years years since I started CIC. Of course they all offer whatever type of operation they specialize in, but all said since I was doing fine with CIC and it was really my choice. None said anything about harm being done. My PSA is .3  

It's one thing to consider an operation when you can't urinate and have a bad quality of life (my IPSS score then was 29, ie severe) but it's another when you're doing just fine (my current IPSS score is 8 or 9, ie.  mild/moderate). That's a better score than I had in my late 20's. 

I certainly don't think CIC is the best option for everyone but certainly one to consider either for long term or just to extend the "watch n' wait" period a little longer for any number of reasons. 

Jim

 

Glad your urolift is working out. My prostate has been holding at 60g for some time now. The uro who did my recent cysto said I had a large median lobe. 

Jim

My prostate was measured at 35 grams in 1995 and I had some urgency and retention as well as night time urination. My UK Uro wanted to do a TURP but when I researched it I decided it was too dangerous and at the time a British journalist was writing of his BPH problems and the dangers of TURP. TURP procedures have changed quite a bit since then but still the bloodiest option. 

One book I read by and American URO spoke of other treatments like TUMP and laser surgery in the future, I had some correspondence with him and he recommended waiting for improved laser surgery.

It took a long time to come and longer to cross the Atlantic and I had to fight the NHS to be referred to an area of the country where it was being done.

Your watch and wait is certainly extended. Would you put up with any other condition for so long?

Jim     Just keep doing what your doing.  It works for you.  My urolift has been good for a year.  Never wanted retro.  And I would not keep having many other procedure to fix a problem like others on here.  If one did not work when have another of the same kind.  Take care  Ken 

Derek,

"Watch and wait" by definition means waiting until something needs to be done. Specific to bph, the IPSS score (International Prostate Sympton Score) is often used to determine how long to watch and wait. In many cases, nothing needs to be done. Ever. You just don't see a lot of those people on this forum.

My IPSS score is like it was in my 20's. For all practical purposes I am practically asymptomatic. So there is nothing signifcant to "put up with" such as urgency, retention, uti's, multiple night time trips to the bathroom, etc. True, I have to do CIC from time to time, but it takes less time than brushing my teeth and about as traumatic. If and when things change then I will try something else. 

Jim

 

Your initial post in this thread sounds a lot worse than that but only you know your own body

The team who did my PVP used a bladder neck sparing technique so I had no retro.

As my prostate regrew Tamsulosin only taken for a few months reduced my ejaculation a lot and the next proceure stopped it. Personally I don't see that as a problem.

Derek, The "a lot worse" stuff in my initial thread is BEFORE I started self catherization. At that time my IPSS (quality of life) score was "severe". All that changed after I started self catherization. Today my IPSS score is "mild to moderate" better than it was in my 20's.

Or maybe you're referring to some other posts where I describe my initial experience with CIC where I state that it was traumatic and accompanied by a couple of UTI's?  So, yes, with some people like me, the first few weeks of CIC can be difficult, for some people not so difficult. But after a fairly short period of time the body adjusts and it can become a quick, easy to perform and painless procedure. As I mentioned earlier I have had no complications or UTIs from CIC in the last couple of years. It was only that initial period when I started. 

Jim

Yeah, I looked at your old and new posts. You have improved your situation but nothing will stop your prostate from growing. Was it really BPH when you were in your 20's?

I was fifty when I was told by the marvelously named Urologist Miss Waterfall that my prostate was slightly enlarged and to 'Keep an eye on it'. It was ten years before it became a noticeable problem.

They can tighten  Uroolift ? Or do they just add more clips or whatever they're called

Jim,

I have been using the CIC method for 3 months now and I'm not sure that I am getting any better. Very little natural voids, usually I'm holding over 400 ML. Maybe I'm not using CIC enough, I'm at 4-5 times a day and usually every 5-6 hours depending on how much water I am drinking. Per your suggestion, I try to stay under 400 which most of the time I am. Drinking screws that up and that's usually on the weekend. I stopped using flowmax a couple of months ago, maybe I cut that too short. 

Jim,

I have been using the CIC method for 3 months now and I'm not sure that I am getting any better. Very little natural voids, usually I'm holding over 400 ML. Maybe I'm not using CIC enough, I'm at 4-5 times a day and usually every 5-6 hours depending on how much water I am drinking. Per your suggestion, I try to stay under 400 which most of the time I am. Drinking screws that up and that's usually on the weekend. I stopped using flowmax a couple of months ago, maybe I cut that too short. 

Tom,

Jim will undoubtedly answer, but from what I remember he said it took a lot longer than 3 months to see a difference. I think you should talk to your Urologist about your strategy.

Good luck

Michael

@tom6446: I have been using the CIC method for 3 months now and I'm not sure that I am getting any better

Same here, 3 months of CIC and still can't pee normally, as in nothing when I try.  I am doing CIC 4-5 times a day at 5-6 hours sometimes a little over or a little under.  I am usually able to keep my numbers under 400 ml though.

I am finding that what I eat and drink can make a difference though so I am limiting the beer and spicy foods and that seems to help  Diet is my current area of experimentation.  I am still on the flomax per the urologist's instructions.

The one positive is that I am feeling urges to pee several times a day which is a sign of bladder recovery.  Are you feeling urges to pee?  Also if your numbers are high, then maybe go to 6 times a day.

Steve 

Tom,

3 months is't very long. It also depends on what was the condition of your bladder and degree of obstruction prior. Also, depends on how you're measuring and defining "getting better".

The most important purpose of CIC is to protect bladder and kidneys. CIC protects the bladder by decompressing it and therefore stopping it from being stretched. The kidneys are protected by reducing bladder pressures and stopping urine from being refluxed back into the kidneys. CIC can do this as well or better than any surgery. So, if you're doing CIC, you're already accomplishing these two things which are the most important.

You also mention that you stopped flomax a couple of months ago. Flomax can sometimes accomplish similar things to CIC, and if indeed it works, and you tolerate the side effects, then you do not need CIC. In fact most people who start CIC were not able to get safe bladder volumes and satisfactory voiding from Flomax, and that includes me.

That said, Flomax, Daily Cialis and other alpha blockers can increase natural voids, even if you self cath. So conversely, if you stopped Flomax as you said, it's not unusual that your natural voids decreased. But that doesn't mean you're not progressing, and conversely starting Flomax again and increasing your natural voids doesn't mean progress. It just means more natural voids with the tradeoff being the side effects. This is a personal choice. The other reason natural voids can decrease with CIC is because you're holding less urine. For example, I sometimes had very large natural voids prior to CIC but my bladder was holding a liter or more of urine. Not good or safe.

So my suggestion is not to focus on natural voids at this early stage but just try best to keep volumes below 400ml. If it means adding another cath or two a day, then add it. I was cathing 6 or more times a day for much of the first year. On the the other hand, if you want to go back to Flomax, it shouldn't hurt, may increase natural voids, but no other benefits beyond that. Personally, I'd wait until you see if you can progress without Flomax and then add it to see how far it can carry you.

Progress with CIC can be slow and sometimes not linear. I had ups and downs the first year and even into the second year. There is also no guarantee that your bladder will be rehabbed to the point where you can throw away the catheters. In my case, after three years I more or less could, but I always looked on that a bonus, it was never an expectation, and honestly came as somewhat of a surprise. Both to me and my doctor.

So if your expectation is that CIC will fix your bladder the same as surgery it may be unrealistic. What it will do, however, is again protect both kidneys and bladder until you do make a surgical decision or forever if you decide not to. It also has the potential to rehabbing the bladder. Many here have seen progress with bladder rehab. Some a little, some moderate, some a lot, and in my case almost complete reversal of symptons.

Jim

I only feel urges to void when my bladder is around 400 ml or more. And if I have a few beers that 400 comes pretty fast. Im trying to cut down on beer and drinking wine and vodka sodas. These are not affecting me as much, maybe because its less volume. Any thought on social drinking and bladder?

Usual advice is to cut out alcohol and caffeine, and it's not bad advice. But if you want, try it both ways. With and without alcohol. Your bladder will soon enough tell you which it likes. Same with caffeine.

Jim

@tom: I only feel urges to void when my bladder is around 400 ml or more

I am feeling urges now at under 300 ml.  The overnight urges sometimes result in 400+ ml.  They are strong enough to wake me up in the middle of the night and in the morning too.  This is a lot better than the 4 to 5 times I was getting up each night and only dribbling before the crisis on New Year's Eve (passing kidney stones) that lead to my current treatment.  When I take my 3 mile evening walk, again the urges are strong enough that if were not for CIC, I would "duck behind a tree" so I CIC when I get home.

Regarding social drinking, I have never been much of a social drinker.  I will often have a beer when I go out to dinner or a glass of red wine if the dinner is Italian.  Consuming alcohol or caffeine is high on my not-to-do list.  It is your call on if you want to continue with social drinking if you have bad BPH and AUR.

Right now, I am experimenting with my diet.  Friday night is usually "beer and burritos". I was getting higher overnight CIC volumes above 400 mi after this so I have cut the spicing in half and my overnight CIC volumes dropped.  I am also seeing higher overnight CIC volumes from spicy Chinese dumplings so I plan to reduce these next. Both the burrito mix and the dumplings are "prepackaged" foods and they may have a higher salt content that may be pushing my overnight CIC volumes.

I have a good friend who is pre-diabetic and they need to watch what they eat and drink.  If you and I have to do CIC, we are both well past the "pre stage" of BPH and AUR.  Just something to think about.

Steve 

Steve,

Cut out the prepackaged food as I am sure they high in sodium, maybe sugar too. I changed my diet 14 years ago to eggs, chicken, and very little bread or pasta at dinner. Still have some chocolate or ice cream cravings but that is limited during the summer when I am more active. This is no linger a diet but a way if life. Very simple and it works. I just beed to watch the alcohol as my neighbors are always out in the summer abd we tend to have a few after softball games. Good luck Steve! Tom

I cut down coffe to one cup in the morning and I feel better. I have few vodka soda and felt much better as well. not as bloaded and less voud thst night and the next morning. I guess if I knew I was hurting my self I would force myself to cut out whatever I needed to completely. I changed my eating 14 years ago and never looked back. I have not been to the uro for a few months, maybe another bladder ultrasound would tell me if I am making progress with shrinking my bladder. My prostate was guestimated at only 25 to 30 so I can check that again. How often do you go and get these checked out? And I just found out that self caths are nit covered by my united health PPO so CIC will be about $200 per month for the coleplast speedi cath.I tried to save a few dollars for the straight tip but it took a little longer to get in. Oh well...

JIm,

Do you think it is best when first starting CIC to take it slow, maybe once per day, letting the urethra heal between each. Then after several days increase the frequency, letting the urethra toughen up.  After the first time I did it at the UROs office I had blood in the urine. Also had some sharp pains. After a day I developed a UTI. The URO wanted me to start cathing each time I had to urinate and keep a log of natural void vs residual.  They also gave me catheters that are size 16, which seems large to me,  and seem to be made from rubber.  I'm thinking of asking for some 14s and 12s and maybe a pre lubricated type.  Do you have any recommendations ?

Thomas

You want to set your cath schedule so that your bladder isn't holding more than 400ml at any one time. That would be the sum of your catherized volume and any natural void just precding it. So, yes, in the beginning always do a natural void when you feel the urge and then cath right after. Write everything down in a log to evaluate and possibly adjust later. I started with 6x/day but depending on your PVRs and the condition of your kidneys, you could arguably ease into it like you say. That said, the first month or so can be difficult for some, it was for me. Lots of bleeding, some pain, false urgencies,  and two UTIs. The body does adjust though. Now it's generally painless and a non issue.

The usual starting size is FR14. I also recommend one with a coude (bent) tip which makes going around the prostate easier. I started with the red rubbers but things got a lot easier when I swtiched to Coloplast's Speedicath FR 14 Coude. (later I dropped to FR12). The Speedicath has its own lubricant in the package so you don't need external lubricant. I would therefore ask for those, mainly FR14 to start and maybe a few FR12's to see if they work. Navigation with the 14's might be easier i the beginning until your technique gets better. Not necessary in the beginning, but you  can check out my posts, or others, on the no-touch "dive bomb" technique. If you're going to feed it in traditionally using your hand I recommend disposable non-powdered rubber gloves to get a better grip and to keep things more sterile.

Jim

@thomas37368: After the first time I did it at the UROs office I had blood in the urine. Also had some sharp pains.

-----

I had some blood and some pain for the first week of CIC.  I attribute that to a tender spot that I developed about an inch into me from when I was snowshoeing with the Foley Cath and the tube had to pass through the flies in 2 pairs of underwear (one being long underwear), which put a bend in the tube and some rubbing.  I still did CIC 3 times a day as the PA urologist recommended.  The blood and pain went away.

They gave me a mix of one-time and reusable catheters and instructions on how to clean the reusable catheter which is natural latex, red in color, and size 14.  After about 6 weeks, I developed a UTI.  It was more quantitative (numbers in my urinalysis) than qualitative (I never felt anything) so after that, I added soaking the reusable catheter in alcohol which after a few minutes will kill all germs.  I let the alcohol evaporate off before applying lubricant.

They gave me a 3 column log to fill out.  CIC 3 times a day is not enough to keep bladder volumes down!  I am now doing CIC 4 or 5 times a day so I made a 5 column Excel spreadsheet complete with formulas for daily totals and averages which is much better than the 3 column log that I started with.  I have though about making it available to this forum, but I don't see a way to do this on this website.

Steve 

Steve ,

Thanks for the info.  The catheters they gave me are GentleCare FR16 with coude tip. I think the FR16 is a little big and contributed to my bleeding and UTI problems.  They look like rubber but it would make sense they would be latex.  I was wondering if they could be cleaned with alcohol, so thanks for the tip.  Do you apply the lub to the whole catheter before using or do you apply a little at a time while inserting, so as to always maintain a dry place to push with ?  And do you wear non-powdered latex gloves, or just clean your hands well ?

Someone should make a catheter with lub inside that could be ejected out the tip by pushing a plunger at the funnel end.   That way the lub would not be rubbed off by the time the time reaches the bladder.

Thomas

@thomas37368:  I was wondering if they could be cleaned with alcohol, so thanks for the tip.

Let me start by saying that I am not an expert at this.  I am learning as I go from my own experience, these forums, and other sources including the family-member-MD.  The catheters that I am using say Covidien Dover  Red Rubber Urethral Catheter, 14 Fr/Ch Coude Tip.

 

I am following the directions that the urology nurse gave me plus adding the alcohol soak which lasts a few minutes while I fill in my CIC volume log in the Excel spreadsheet.   I store everything in plastic bags that I get each week in the vegetable section of the grocery store.  The catheter and paper towels are kept in these bags for storage and changed each week.  The alcohol is in a glass jar with a screw on lid.

I start with placing a sheet of paper towel on the bathroom counter.  I then slip the catheter out of the bag onto the paper towel making sure not to touch it.  I then dip the lube container and my forceps in the alcohol.  I then spend a lot of time cleaning my hands and private parts with dial liquid anti-bacterial soap.  Both the urology nurse and the family-member-MD recommended this soap.

I gave myself a haircut down there as when I had the UTI, the bacteria was from my butt so less hair means less chance of contamination when washing.  It also makes drying off faster too

I lube the catheter with a small amount of lube and distribute it the length of the part of the catheter to be inserted.  With some practice, I learned that a little bit of lube goes a long way.  When I am done self-cathing, I wash the catheter in very hot (120 degree F) water with the dial liquid soap applied to the outside and then rinse the catheter thoroughly.

I soak the catheter in a glass jar of alcohol while I fill in my self-cath log which is for a few minutes.  After the log is done, I use the forceps to remove the catheter from the jar and place it on the paper towel to dry for a few minutes and then put it back in the plastic bag.  Note that if a little alcohol remains in or on the catheter, it may sting a very little bit the next time but this is not a big deal.

I am assuming that the one-time-use catheters used by others on this forum are a lot easier to use and take a lot less time

My 2 cents,

Steve 

Steve,

Bleeding is normal the first several weeks of CIC. The body is simply getting used to the catheter. You should set you cath schedule based on total bladder volumes. The total bladder volume is the catheterized volume plus the volume of any natural void preceding it. If the sum is over 400 then increase the frequecy. If it's under 200, decrease the frequency. You should not have been given antibiotics for an asymptomatic UTI, regardless of what the numbers show. Positive leucocytes, nitrites and blood are fairly normal when you CIC. If you treat just the numbers you could end up with antibiotic resistance. What do you mean about "one time" caheters? Are you referring to the ones wtth a hydrophilic coating? Just about all cathters can be reused except those with hydrophllic coatings.

Jim

Yes, single use hydrophillics are easy. Open package, cath, throw away cath. That said, if you don't have insurance the economics of reusable catheters are much better.

Jim

@jimjames:  Bleeding is normal the first several weeks of CIC

In my case, the bleeding was from a spot that was "tenderized" by the Foley cath's tube when I went snowshoeing.  I tried a few times to make adjustments without success that day.  During the Foley cath time, I gave up my preferred sport of skiing as a fall could have been worse, especially if I broke the bag and made some yellow snow

Right now, I am feeling pretty good about my CIC schedule as the volumes are below 400 and usually between 200 and 350.  Before I go to bed, I will do a CIC just like I used to pee before bed because of the BPH nocturia.

I and the family-member MD agree with not taking antibiotics for an an asymptomatic UTI, regardless of what the numbers show.  The urologist had me take antibiotics so I did but I really didn't need to.  I have a history of URI's that turn into pneumonia so I do not take antibiotics until I see signs of secondary infection (my lung goop turns yellow and green) at which point, I immediately start an Azithromycin Z-pak.

About the "one time" caths, I am just going by what the urology nurse told me.  She gave me some that were "one time" and some that were reusable.  So far, I have just used the reusables but when I went skiing, I brought a "one time" in my gear bag just in case.  I will look into the hydrophllic coating and what my insurance will cover but so far what I have works.

Steve 

Not treating asymptomatic bacturia with CIC patients is an established rule with only specific exceptions. Unfortunately, many GPs do not understand so it's up to an educated patient to inform and not simply take what is prescribed. Uro's should know this, especially if they have a CIC patient population. If you want to try a hydrophillic,start with Coloplast's Speedicath Coude in FR14. You might want to sample size FR12 as well. You can go online and get just a couple to try and some sites don't even require an rx. They also have a straight version if you don't want to use a coude (bent) tip version. Medicare pays for up to 200 a month.

Jim