Experience of CIC for years

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I have been CICing for over 3 years, due to a painful inability to urinate naturally if there is more than about 70ml in my bladder. Less volume than that is no problem at all. This is something I cannot understand. Why easy at 70ml, impossible at 100ml ?

The most meaningful doctor-written diagnosis says I have a partially occlusive trilobar prostate, and a trabeculated bladder with a diverticula.

What caused all this is a cystoscopic inspection performed without realising I was still on clopidogrel (anti-platelet medicine) after insertion of a heart stent. Bleeding in the bladder caused by the cystoscope would not stop for 8 days, with intense pain of urinary retention, and bladder damage resulted (trabeculated bladder means gone stiff with kind of criss-cross lines in the bladder wall).

I'm unaware if any surgical procedure on my prostate would enable my bladder to regain enough flexibility to behave normally, although one doctors said I might have 90% chance of being able to urinate freely, 60% chance of less urgency. So at the moment, I am happy to continue with CIC, and just waiting for the best operational procedure to emerge.

On the CIC question, after the hospital stay, I was also on a foley catheter for at least 8 weeks.....then absurdly I had no difficulty in learning the self-cath process in about 30 seconds. Since then for more than 3 years I have used Coloplast Speedicath 12fr, without any special coude tip. I also keep some even slippier Lofric Origo catheters for out-and-about because they fold up very easily and also can be tied in a knot inside a disposal bag, although they take a few extra seconds to prepare over the speedicaths. Sometimes the catheter will not pass the prostate obstruction, and if that happens, I find sitting on a firm surface enables me to pass the catheter right into the bladder.

Hope this helps some men discover that CIC is not to be feared or discounted as a longish-term help.

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  • Posted

    I have been doing CIC (clean intermittent catherization) for 2 1/2 years. I also have a trabeculated bladder with a diverticula. I also use Speedicath 12F.  So we have a lot in common!

    What exactly is "partially occlusive trilobar prostate"? Is this garden variety BPH caused by prostate obstruction, or something else?  Prior to the bleeding caused by the cystoscopic procedure mentioned, what kind of symptons did you have? 

    BTW I also seemed to have a natural void ceiling (for me around 400cc) where if my bladder holds more than 400cc I would be unable to naturally void and have to CIC. This issue has seemed to go away during the past month so my fingers are crossed, and in fact for several weeks now I have been able to stop CIC altogether with relatively low PVRs in the 0-150 range, but mostly under 100. More on this later because it seems to suggest that at least in my case my bladder was able to regain it's elasticity through the process of CIC. 

    Is this the same sort of issue you are talking about where if your bladder holds more than 70ml, then you cannot naturally void but must do CIC? Also, curious what are the symptons/feelings when you try and naturally void when say your bladder has more than 70ml. For me, it was a sharp pain on the tip of my penis that overrode the ability to urinate. Also curious at what point you get the urge to urinate. For me, it's usually when my bladder is holding 400ml of urine, but sometimes a little less. At 70ml, for example, the amount you mentioned, I doubt I would be able to urinate.

    You mention you sometimes have difficulty passing the catheter around the prostate. Why aren't you using a coude tip, since the purpose of the coude tip is to make navigation around an enlarged prostate as easy as possible?

    Jim

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    • Posted

      Fascinating to find you ! I will do my best to answer your questions.....

      What is partially occlusive ? I was rather hoping someone would know !  It seems reasonable that he just meant partially obstructing the urethra, or BHP in English.

      Prior to the cystosopy, I had just the normal BHP symptoms, becoming more difficult and sometimes painful to pee, so the cystoscopy was to look into that.

      Is this the same sort of issue you have ? I would say exactly the same, but you have 400ml of bladder to play with and a bit more, I only have 70ml and a bit more. In fact at night I will be woken with quite a painfully full feeling, and have to catheterise, but the volume has never been more than about 180ml in the last 2 years.  If I try to void with more than 70ml, I will get a quite intense pain low down - probably a bladder spasm.

      The coude tip ? I had never heard of it, nor been told about it until I saw it mentioned in a your similar post on here. I have a couple of trial catheters (and have used one or two), which have a tip called Tiemann, which is probably very similar, but probably a bit more pointed. The word on the Tiemann tip was - dangerous to use, because it is too easy to create a false passage or worse. Now that I have looked up coude tips, I see they would probably be the answer to my occasionaly problems, and it's nice to know I could probably get them if the need arises.

      On your later post about a urodynamic study, I had one years ago, but since I cannot urinate more than 70ml naturally, then there is little to learn from that small amount, and pouring more water in is not going to come out naturally anyway !!

      I am now researching the PAE procedure, having realised my initial Holep preference may not be readily obtainable (Birmingham), and even if so, is looking such a highly-skilled process that doubts creep in. Have you had any thoughts about where you go from here, and how long would you be prepared to go on with CIC?

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    • Posted

      Speedicath comes with a coude tip. It is designed for people with BPH so I am surprised you weren't started with one. "Tiemann" is similar but neither is "dangerous to use", not sure where you got that. In fact, a straight catheter can be dangerous to use if you have an enlarged prostate because it can "stick" on the way in, nick the prostate, or even create a false passage like you mentioned. I think if you switched to Coude tip you would eliminate the need to sit down to allow the catheter to pass. Why don't you ask for some samples and try them? If your doc or distributor doesn't have them I found that Coloplast was very good with free samples when I needed them. BTW one technique I use when passing the prostate is to very gently "twist" the catheter back and forth just a little so it will pass more easily. As to Coude tip, the tip must be lined up properly which is easy but make sure you look at the instructions because the way you think it should line up may be wrong.

      VIdeo urodynamics is different from the usual type. In theory it would record exactly what is happening when you run into a wall voiding in amounts over 70ml.

      Two and a half years ago my urologist recomeded a TURP as I was retaining probably a liter or so of urine and at one point could not void without pushing down on my bladder with the palm of my hand. I was as close to acute urinary retention as you can get.

       I started CiC as part of a six week process to give my bladder a rest before surgery and to hopefully restore some elasticity so that the surgery would have a better outcome as my bladder had gone atonic (flaccid). 

      After researching TURP out, I decided to pass on the operation because of potetial sexual side effects such as retrograde ejaculation, and wait for something better. 

      After a rocky start with CIC, it became quite painless and easy. Because of that I was in no rush to jump into any of the newer procedures such as PAE. Plan was to keep on with CIC until a procdure came along that I was sold on.  And if nothing like that came along, the plan was to continue CIC, even forever, since it was working so well.

      Then, a couple of months ago, I found that my natural voids were increasing in volume and that my PVRs were decreasing. So I started to CIC less, sometimes not every day. Long story short I haven't done CIC for several weeks now and I'm pretty sure my PVRs are under 100cc ,because of both how I feel, void logs, and an ultrasound at my urologist just a week ago which showed a PVR of 30cc.  The last CIC I did was because I felt that pain at over 400cc, but again, that hasn't happened recently and I've carried over 400cc of urine in my bladder over the past month prior to voiding. 

      I have several theories, but the main one is that the :CIC over time has rehabilitated my bladder to the point where it's working within a normal range for someone with BPH who does not require surgery. My urologist doesn't really have an explanation and admits he's surprised on my recovery. I still have no idea how all of a sudden I got over the 400cc hurdle, but I did. 

      I'm realistic that this may not go on forever, but right now I'm voiding naturally all of the time, and have a better quality of life prostate score than I did 20 years ago. And that's all without any operation or meds.

      Jim

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    • Posted

      Even before you spontaneously improved, you can only have been voiding 5 or 6 times a day at 400ml per go?

      I am at something like 15-20 times per day, which is a bugbear, but not a major problem except those incomprehensible times when I need to CIC each time. It has happened, and I hope it does not happen again.......may have been a UTI of course.

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    • Posted

      There were times when I was not able to naturally void most of the time and therefore my frequency was lower because the catheter volumes were higher than normal void volumes. 

      Later on, it was a mixture of natural void only, natural void plus catheter, and catheter void only -- and often in the same day. So, here, the volumes averaged lower and I therefore voided more times per day. 

      Lately, my natural void volumes have increased to where it's 250-300cc around half the time and 100-150cc the other half, with no catherization. My total void is around 2000cc a day, so probably visiting the bathroom around 10 times in 24 hours. 

      10 times a day is not normal for someone without BPH, but for me it's quite acceptable compared to where I was before the whole CIC journey started. In effect, I went from a "Watch N' Wait mode" to a "Let's get ready for surgery" mode to a "CIC instead of surgery" mode and now back to a "Watch n Wait" mode. However, my Interational Prostate System Lifestyle Score is probably better than it was 20 years ago. 

      https://patient.info/forums/discuss/what-is-your-international-prostate-sympton-score--453484

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    • Posted

      gbhall,

      Usually there's no need for relaxant drugs (Flomax, Cialis) when you do CIC because you're going to empty the bladder completely regardless. However, in your case with such small voids and 15-20 trips to the bathroom, these drugs are  something to consider trying if you haven't already. 

      In the past I have tried both Flomax and Daily Cialis, and found Daily Cialis (5mg/day) helpful in increasing my void volumes and therefore decreasing the number of voids per day.

      Jim 

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    • Posted

      I have been on finasteride and tamulosin for the same time as I have used CIC. Your posts have made me realise two things.

      First I have no idea if either drug is doing anything for me, except the most obvious sexual drawbacks.

      Second, why have I not experimented ? The reason is a previously unappreciated side effect of having an NHS in Britain. When over 60, you dont pay anything for teatment (nor does anyone on benefits, which in actual fact probably means fewer than one quarter of prescriptions get paid for).

      Consequently, if a drug is prescribed for you, you just keep on using it, probably until someone advises you to stop, or it begins to kill you slowly. There is no incentive to check if it is in my best interest to take this drug, or to optmise my usage of it.

      I now for the first time understand why our NHS is strangling the country. Unintended side-effects always wreck things, don't they ?

      So I will try dropping tge tamulosin, the finasteride is probably slowing my prostate growth, so I will goon with that. Do you haveany view on long-term use of thode drugs ?

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    • Posted

      As mentioned, CIC replaces the need for tamulosin in most cases since it allows you complete bladder emptying which is the purpose of tamulosin. I just thought tamulosin might help you with your natural voids since they were more frequent. It will be interesting to see if it makes any difference in that regard if you go off tamulosin. You will probabably know within a couple of weeks.

      As to finasteride, do you have a very large prostate? Has it shrunk it and by how much? My understading is that you took this drug to shrink your prostate to help with bph. but it doesn't help everyone and doesn't seem to help you, plus has a side effect profile. I never took it and my prostate does not appear to be growing. So stopping that drug for awhile might be something you might want to speak to your doctor about. Who knows, stoppig finasteride  may even help with your void volumes.

      Can you get second opinions with your health care system? If you can, I'd try to seek out a urologist more supportive of CIC, atthough that can sometimes be difficult. 

      Here, in the States, if you're on Medicare you don't pay for your doctors or catheter supplies either. But we can see as many different doctors as we want. Second, third, fourth opinion, etc. if needed. And the decision is ours because with Medicare you don't need a referral to a specialist, you just make an appointment. Not every doctor accepts the insurance, but the majority do, including many of the top specialists.

      Jim

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    • Posted

      In the NHS, you have nearly free choice of a GP (general practitioner), but changing is a hastle, so rarely happens. Besides they are thin on the ground in an over-crowded island.  The GP is a kind of gatekeeper, and handles the referral process to a specialist consultant - almost always in the local hospital after a lengthy wait. There are always public rows going on about missed waiting time targets, which is very upsetting for some cases and a reason many people beggar themselves to 'go private'.

      In turn, the consultant, nominally a Public Servant, is actually lord of all he surveys. Having said that, you rarely get to see the same hospital doctor twice. First time you usually see the head of department, but subsequently 'one of the team'. So continuity of care is a very real but rarely addressed problem in the NHS.

      Seems to me your system possibly gives better care, with the exception that you, the patient, is probably regarded as a 'customer' in a very real sense, so a doctor's aim is not always to cure you, but to keep you a satisfied paying customer.  Am I being too cynical ?

      In all events, the truth is more like whereas you are saying 'you took this drug' the reality is 'you were prescribed this drug'. In short we are encouraged in this country to actively participate in our treatment only up to a very limited point, and to be tugging our forelocks as we do so.

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    • Posted

      I'm sure each system has its pros and cons but personally I'd take the system here with Medicare hands down. I would not want to be limited to a single doctor for all the obvious reasons.

      In fact, I read one study which discussed how quickly doctors made their inital diagnosis, and how hard it was for them to change it because either they come up becoming invested in that diagnosis or just really don't want to give the case too much more thought other than "handling" it. When I sense this, that's when I switch doctors for a fresh look!

      But yes, we are the "customer",  and in urology, the doctors here usually recommend whatever operation they are trained in. I think they do want us to get well but their training limits them in terms of the options that we the patient are presented with. That's why it is so important to do your own research and many in this forum are doing. 

      I'm probably one of only a handful of long term CIC patients that my last two urologists have. The rest of their patients where medications don't work, are guided to whatever operation the doctor is trained in. I consider myself a bit more assertive and sophistated than the average patient, but even so, it's not always easy to stand your ground when they tell you this is what you need, and you know you want something else. But you really got to do it because it's your body.

      Jim

       

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  • Posted

    You said: "This is something I cannot understand. Why easy at 70ml, impossible at 100ml ?"

    ----------

    So I wondered the same thing with me. Why could I naturally void at say 350ml, but impossible at 400ml? My theories ranged from weak detrusor muscles (less volume requires less effort) to the diverticum, to the fuller bladder making the already obstructed urethra (from an elarged prostate) even worse by pressing on it. . My urologist didn't have a clear answer. Like I said, I haven't had this problem for several weeks now, so am not persuing it. 

    I believe they can do a video urodynamic study which in theory should show what is going on inside when you try and void at different volumes. Something you may want to talk to your doctor about. 

    Jim

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  • Posted

    Just a data point from someone who's been CICing for two years.  Until one month ago it was 3x/day, now 4x.

    From the beginning I have used a straight tip (Magic 3 from Rochester Medical, hydrophillic coated, 14FR/CH) with no difficulty whatsoever.

    The benefit is that I don't have to worry about twisting it into position, or anything like that, but I know this is what works for me, but not for everyone.

     

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    • Posted

      I'm alos using the Magic 3.  I noticed some subtle changes for the worse in the catheter just a few months ago:

      Tip and first few inches are a little more narrow. 

      Liquid pack is different and may either have a different type of fluid or less of it.

      These 2 things seem to combine to make catheterizing just a bit more painful (but still not bad).

      I'm going to call the distributor to ask about this and ask if I can continue to get the others which were more comfortable.

      Have you noticed these slight changes?

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    • Posted

      Would you volunteer what quantity you can void naturally, and how much when you CIC ?

      Also it would be interesting if you 'hit a wall' at a particular volume as described by jim and myself ?

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    • Posted

      No, not those, but I did get one defective catheter, in which the tip, itself, appeared to have been severed before packaging.  That's the only flaw in two years.
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    • Posted

      Frankly, I don't check my natural void levels; sometimes I might be p*ssing for twenty or thirty seconds, when I have a strong urge to pee, while at other times, when I am trying to force something out, just before CICing, it's only a few seconds worth.

      I suppose it would be interesting to find out the volume on one of those strong, natural urge cycles, but often that's when I am busy and - even when at home - disinclined to take the extra time.

      If I'm out and about, well, that's just impossible to measure.

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    • Posted

      I've been curious about how a straight catheter would work for me, but honestly afraid to try given the "tight corners" I sometimes encounter navigating into the bladder. Also, I've been quite happy with the Coude's ever since I switched to the Speedicath. Anyway, it's academic now since I'm not cathing. 

      I might have been misunderstood when I talked about sometimes (twisting) the catheter when it reached resistance. This had nothing to do with the Coude tip, just a technique to further navigate while using minimum pressure. Also, unless you're using a closed system with bag, there's nothing to worry about in terms of the "position" of the coude tip. The curve faces you, and in it goes. 

      Jim

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    • Posted

      Doing a void diary, at least for several days, with periodic checking, can be very useful. I use a 600ml Pyrex measuring cup (just happened to have it i the kitchen). I keep it in the bathroom and simply pick it up, void right into it, take a quick look at the level, and dump it into  the toilet. I doubt if it takes more than five seconds longer than without it. When outside the house, I carried they have all different sized rubber measuring cups or sometimes I just used a 8 oz paper cup and did an eye ball estimate. When meauring catherized voids I would set the measuring cup down and aim into it. If your aim isn't great, you could use a larger container and then pour it into the measuring cup. 

      Jim

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    • Posted

      Jim - Some time ago, you pointed out to me that the coude tip catheter was specific for BHP use, and this was your response to my mentioning that with a 'normal' catheter I was mostly having to sit to pass the catheter (compress the prostate front to back in other words).

      So my catheter supplier sent me some to try, and I found it easier, and now my supplies are always tiemann tip (identical to coude apparently) and I can confirm that I can now virtually always pass the catheter first time.

      Result !! Once again, I confirm the jimjames contention that CIC oought to be much better known and is a safe, easy process and a fine way to avoid any hasty decision on which prostate procedure might suit one best.

       

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    • Posted

      Jim,

      Don't know if you're still out there, but wanted to thank you again for all the good words you put out for Self Cathing. 4.5 months ago while we were away from home I suddenly couldn't urinate. I went to an urgent care clinic, they thought bladder infection and gave me antibiotic. Unfortunately never checked my retained volume. 3 days later when on VA ER they drained 2.2liters. Nurse said that was new record for her. Put me on Foley catheter hope being if bladder had a rest it would rebound. After 2 weeks, tested to see if I could void on my own... No luck, so I choose Self Cath route. Thanks to all the tips, etc on this forum, it was doable. Someone said takes no longer than brushing your teeth. After a month of this and no ability void on my own, I started looking around more for other options. To make a long story short, I choose HOLEP surgery. Had to wait a month to get scheduled. Had it done 1 week ago. Able to pee on my own when I left the hospital after 2 night stay. Somewhat irregular first couple of day but has now settled down to regular pattern. First days I had high retained amounts which I took care of by Self Cath. Last 2 days no need for that. Yesterday Hospital checked retained volume at 120cc. Pretty good at this stage for a 77 year old. I am overjoyed with my ability to go on my own! Comfortable that if I ever need it I know how to Self Cath. The HOLEP was virtually painless. VA docs and nurses were wonderful. Give it serious consideration if it's your range of alternatives.

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    • Posted

      ...and oh yes... Couldn't have made it through the whole process without the loving support of my wonderful nurse wife!!!

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    • Posted

      Glad things worked out for you. I decided to pass on Holep and other similar procedures because of the retro thing although many people don't mind it. That aside, I only have to self cath now and then these days and it's so easy for me now that really not all that motivated for an operation or procedure. Like I said earlier, about as troublesome as brushing my teeth these days, except I brush my teeth a lot more than self cath! I should add that if I had to cath a lot during the day outside the house, I might be more apt to consider a procedure, but even when I do cath, 95% of the time it's at home either in the morning or evening. 

      Jim

      Jim

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