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

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jimjames
jimjames

Since I posted a thread about self-catherization -- more formally called Clean Intermittent Catherization (CIC) -- there have been a few different discussions on the topic in various threads. I thought it might make sense to bring those discussions over to a dedicated thread. With that in mind, I will summarize and/or copy and paste some of what was said before into this thread for better continuity.

My story in a nutshell. 68 years old with BPH probably since my late 20’s. Watch n’Wait strategy with on-and-off trials of Tamsulosin (Flomax) with poor results.  Symptoms were the  normal retention issues resulting in frequent urination with incomplete emptying, urgency, and having to go to the bathroom at night in increasing frequencies. Near the end, two or three uti’s per year often accompanied by gross hematuria (bleeding).  

Two years ago things got significantly worse and I couldn’t urinate on my own without physically pushing against my bladder (Crede Maneuver). That led to another trip to the urologist where  ultrasound showed significant retention and hydronephrosis (water in the kidneys). I was told I needed an operation (this facility primarily did Turps) but first I had to rehabilitate my bladder because at the time  it was too flaccid (stretched) for a good surgical outcome. I was given the choice of wearing a Foley Catheter for six weeks, or a program of self-catherization (CIC) in order to decompress the bladder. I chose CIC so I didn’t have to wear a Foley 24/7, and also because I felt it put me more in control.

Six weeks later my bladder was rehabilitated to the extent they could do a Turp, and the hydronephrosis was gone. After doing some research and a lot of thinking I decided to put off the Turp due to the potential of irreversible side effects, primarily retrograde ejaculation. Two years later, I am still doing CIC while waiting for newer procedures with better outcomes and fewer side effects.

I will detail my experiences with CIC in following posts -- but to summarize, once mastered, it’s a painless five minute procedure that allows you to empty your bladder completely any time you want. With CIC, I therefore have no retention issues, no urgency, and in most cases sleep 6-8 hours through the night without having to get up and go to the bathroom. No UTI’s in over 18 months. And because my bladder has been partially rehabilitated, I can urinate normally about 50% of the time without using the Crede maneuver.  My IPSS Score (International Prostate Symptom Score) would be Zero (the best), albeit with a little mechanical assist. smile

As of now, nothing that I have read about the various current procedures has tempted me to have an operation. That could, or could not change, in the future, but the nice thing about CIC is that you can stop it any time you want with no repercussions. The caveat is that CIC should be done under the supervision of a doctor who will monitor your BPH as required. Similar to seeing a doctor on a regular basis during a Watch n’ Wait BPH strategy.

I know many of you here have already had operations like Turp, and in most cases people seem pleased with the outcomes. CIC certainly isn’t’ for everyone, and I can understand why someone does not want to carry around a urinary “tool box” with them. On the other hand, with practice, it’s not the traumatic and scary procedure some think. I can honestly say right now that for me it’s about as traumatic as brushing my teeth.

I’m offering my experiences and thoughts on CIC for any of those who haven’t yet made up their mind on an operation. It even can make sense for those of you who don’t need an operation yet, but want to increase their IPSS quality of life score. In fact, wish I had done CIC earlier while on Watchful Waiting. Didn’t realize how much BPH had been affecting me for most of my adult life until I was able to empty my bladder completely.

CIC doesn’t have to be a permanent solution, it could just part of a waiting strategy like I’m on, until better surgical operations are developed with better outcomes and fewer permanent side effects.

For any number of reasons, the majority of urologists don’t seem to offer CIC as an alternative to surgery. My current urologist doesn’t as far as I know, but he’s OK with what I’m doing because it works for me. So, either you have to find a urologist you can convince to go along, or go to some of the major teaching hospitals where CIC is probably more in use and better understood. That is where I was taught, albeit not very well, but that is another story.

Jim

 

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  • john11426
    john11426 jimjames

    Posted

    Hello, Jim. Thank you vgery much for your response. Sorry I'm slow to reply to your query. Today is Thanksgiving Day in Canada.  Hope you have a good one in November. I had a new foley installed a couple of days ago. The nurse tried to inflate the balloon while it was inside my prostate and it caused my prostate to bleed. The bleeding has subsided, but for awhile I was spending a lot of time in bed to avoid tugging on the catheter. My prostate still feels irritated. I've found that an indwelling catheter is uncomfortable at best. It does restrict my physical activity a lot.

    Your prostate size is smaller than mine, but that does not necessarily mean that I could not be successful in remediating my bladder and bph symptoms using your therapy. I've read that size of prostate isn't the only thing that is relevant to lower urinary tract symptoms associated with BPH. However, I was told I have an enlarged median lobe that protrudes into my bladder which can act like a ball valve to restrict the flow of urine from my bladder, so my results may not be as successful as yours. But I do think it is worth a try. If nothing else, it will give me some more time to think about whether I really need that TURP, and hopefully it will not do any harm, if I'm careful.

    As you know, many of us feel there is a lack of support and encouragement from the doctors we have to work with.  My present urologist did not tell me about the risks of a TURP procedure or other options available. He simply told me I needed a TURP because my prostate and PVR were both very large. And he told me I should be catheterized first for a 3 months period before the TURP. I cannot pridict how he will react when I suggest intermittent catheterization for a longer period in order to rehabilitate my bladder to the extent that I could get along with just the meds, sporadic CIC and possibly forestall the TURP indefinitely. He may just tell me that I dont know anything (a little knowledge is a dangerous thing) and that I should just do what he tells me to. At least he didn't object when I asked for intermittent catheterization instead of indwelling.

    A year ago, I went to my GP  because I wanted him to write a prescription for doxazosin, because I felt terazosin wasn't helping me enough. This GP said he would comply, but he never got around to it. He seemed focussed on getting me to see a hematologist about my anemia, which I considered non issue. The hematologist scheduled me for a bone marrow sample without a consultation first, so I balked. So I stopped taking terazosin for a year, and my lower urinary tract symptoms got worse. I went back to this GP recently to check out a bulge in my abdomen which I thought might be a tumor. As it turned out, a different GP, who was filling in for my usual GP, ordered an ultrasound which revealed the "trabeculated" bladder and very large PVR. I was told by this second GP that anyone who treats himself has a fool for a doctor. Do I have a skeptical attitude? Yes, but I think that's healthy.

    I think that intermittent seems a better option than indwelling for rehabilitating my bladder. I asked for intermittent when I first went to the clinic to have a catheter installed, but the urology nurse there suggested it might be better for me to start with a foley and later switch to intermittent. I think the reason I wanted to try CIC is becaue I had read some of your posts on this website. I also thought it would give me more freedom than a foley. Now after having read all your posts on this new thread and having some time to think about it, I think I can understand more what are the advantages of CIC over indwelling for bladder rehabilitation. As I see it, they are: You can keep the volume of urine in your bladder down to a reasonable maximum which you suggest is 400 mL by varying the number of times per day that you catheterize yourself. That gives the bladder time to shrink down to a normal size. This would also happen with a foley I think because the bladder is drained continuously and never expands a whit (at least in theory; I find my bladder holds up to 400 mL when I am hooked up to the night bag). However, I think the main advantage is that you can also pee normally whenever your system is ready to do so and when you decide to do so. I think this gets you closer to the goal of being independent of catheterization by effectively training the bladder. With a foley, you don't give your system a chance to pee normally until the foley is removed. But it is never out for very long. Around here, they change the foley every month, or two weeks if you have an enlarged prostate. So at some point you could take the decision to keep it out, but that would be an abrupt change and the results might be rather disappointing because for example your detrussor muscles may have gotten lazy, or for some other reasons such lack of the coordination of muscles in the two sphincters and prostate and urethra during micturation. If what I just said is true, it seems that intermittent is much better than indwelling for rehabilitating the bladder prior to a TURP (or indefinitely, if you're really lucky), and for restoring normal micturation.

    There are also disadvantages to CIC: It can be quite difficult and painful to insert a catheter when you have an enlarged prostate. That has been my overall impression so far. The first foley was inserted by a nurse at the urologist's clinic, and it wasn't painful. I think she was quite competent. But the second and third foley were inserted by I think less experienced/skilled/competent nurses with difficulty and a lot of pain. I can't say that self-inserting an intermittent catheter will be any easier or harder than inserting a foley, because I don't have enough experience. All I know is that when I tried it once, my bladder was still bleeding from being decompressed by the first foley. It was premature I think to try CIC. The nurse who came to my house with a supply of intermittent catheters and instructions to train me to use them just handed me a catheter after she put lubrication on it and told me to insert it while she watched. I couldn't get it into my prostate. It was too slippery, and I was not wearing gloves. She then inserted it and pulled it back out again. She was wearing latex gloves. The hole in the end of the catheter was plugged by a blood clot. I later that day went to emergency at the hospital for irrigation, and to insert a new foley. The nurse in emerg tried to insert the foley very quickly. She was was in a hurry and struggled to get it in, and it was very painful. Instead of cursing, she soothed herself by saying "It's not due to any lack of skill or experience on my part, etc." She wasn't at all like the nurse at the urology clinic who was gentle and unhurried. So to try to make a long story short, I think I am quite shy of catheterization in general at this point because of the bad experiences I have had so far.

    At least I haven't gotten a UTI yet. That may be another disadvantage of CIC, I'm not sure. But with all that in and out, it seems to offer a greater chance of infection. However, I'd rather trust myself to take precautions against infection than some of the nurses that I have had the misfortune to have worked on my body. It seems that their skill at catheterization is not always as good as it should be. I also feel like a pawn when I have to deal with so many of them. As far as I know, I have little choice by to take the luck of the draw with nurses.

    I have some detailed questions for you, if you don't mind, about your methods and your experiences during the process that you have described. How was the decision to get started on intermittent made?  Have you ever had a foley inserted? If so, how would you compare that experience with having an intermittent inserted? Were you happy with the training you received in self-cathing? How did you get the idea to rehabilitate your bladder over a long period using CIC? Did a urologist suggest it? Or did you get the idea from independent research you did? How exactly did this come about? Do you have any references to medical literature that describes retraining a flaccid bladder and restoring normal micturation using CIC? Can you compare the experience of having a coude tip with having a straight tip catheter inserted? How do you explain the UTI's that you said you got when you started self-cathing? Did get up several times in the night to pee or self-cath? I have many more questions probably than you have time to answer. I don't want to overwhelm you.

    I produce from 1600 to 1900 mL over a 10 hour period while I sleep. I get up once or twice at night to drain the night bag which has a 2L capacity. Lately, I have been draining my bladder during the day every 2 or 3 hours by pulling out a plug from the flared end of my foley. I prefer this to using a leg bag. I have been trying to keep the volume down to less than 400 mL. I have asked/begged for catheter valves (e.g. flip flo or easy flo), but the system I have here for supplying me with catheter materials is pretty stingy, so I haven't gotten them to provide any catheter valves yet. I think catheter valves would be safer to use than plugs, but they don't seem concerned about safety. They expect me to use ony two night bags and two leg bags per week.

     

    • jimjames
      jimjames john11426

      Posted

      Hi John, Happy Thanksgiving Day! I’ll try and answer your questions as best I can but first I want to clarify again that anyone considering clean self catherization (CIC) should have realistic expectations of both what it can accomplish and and how much it can rehabilitate the bladder.

      What CIC can do is provide most people with a quick and painless way to empty their bladder completely any time they want. Because the bladder empties completely, the kidneys are protected and UTI’s eliminated or reduced. Other issues such as urgency, leakage, and frequency are either eliminated or greatly reduced. Because of this, CIC offers an alternative non-surgical approach to those with BPH. It can either be continued indefinitely, or can be used as part of a “watch and wait” strategy unit better surgical procedures are developed.

      Also, CIC, like a Foley, can be used for short term bladder rehabilitation prior to a surgical procedure like TURP. Studies have shown that if the bladder is decompressed through catherization prior to these surgeries, there will be better surgical outcomes and less need for catherization post surgery.

      What is not realistic is to expect that CIC will rehabilitate your bladder to the extent that you can eventually go off CIC completely with normal voids and normal PVR’s without surgery.

      In my case, I was able to do this, but it was as much a surprise to me as my doctors. And while I’m not the only one this might work for, again I think it unrealistic to expect this from the onset. I certainly didn’t and would still be happy with my choice even if I still had to self-cath, which very well may happen in the future.

      So, I think the best way to look at complete bladder rehabilitation from CIC is a bonus with low odds, but not as something to expect.

       I think this addresses your first question as to how the size of the bladder may play a role in complete remediation. Since we don’t know how/why things worked out with me, I don’t think there’s a good answer to your question, but again, don’t go into CIC if you will be disappointed that you did not get complete remediation in the end. But your other point about “buying time” is a good reason and in fact you may find out that the CIC process works do well for you that you may not even want that “better” surgery of the future.

      As to how to approach your doctor, I’m lucky that here in the U.S. if it doesn't work out with one doctor, you can make an appointment with another doctor the next day. And a third or fourth if needed. Insurance company doesn't mind.

      Your doctor’s suggestion that you be catherized for a 3 month period before TURP shows that at least that he is aware of the studies that catherization can rehab the bladder. Many doctors aren't aware. I was also offered that option prior to a TURP (that I never had) but I was also offered the option of CIC. Maybe you can compromise with a month of the Foley and then 2 months of CIC, as the urology nurse suggested. Better would be to start with CIC, but anyway to get to where you want to be should be considered.

      You should also be aware, that like with a FOLEY, for many people (I was one) CIC can be somewhat traumatic for the first several weeks, with bleeding, false urgency and other stuff while the system adjusts. You may be lucky, but if not all I can say is that there is a light at the end of that tunnel and at some point the body will adjust and then the process is completely painless and easy.

      As to technique, I don’t use gloves but then I don’t touch the “slippery” part either. Technique will get easier with time and I can try and give you some pointers at another time. But you will want a Coude (curved) tip on the catheter because of your enlarged prostate and I would recommend a hydrophilic catheter because they go in easier. I use Coloplast's Speedicath 12French with the Coude Tip. (Technique wise it might be easier to start with a 14French as it's stiffer and therefore easier to handle.)

      As to some of your “detailed” questions --

      Never had a Foley so not sure how it works with the valves and how/if you can do a natural void with them. But with CIC , if able you can do natural voids which do exercise the detrusor muscles, so you get both a combination of rest and exercise, not just rest alone with the foley. As to insertion, I believe the Foley is slightly larger in diameter than the one used with CIC (I use 12French) so from that point of view insertion should be easier and since you're inserting yourself you will get valuable feedback that a nurse can't if they are doing the insertion.

      I was not happy with my “training” at all. Among other things,  I developed a UTI right off the bat and they delayed in treating it causing me a lot of unnecessary pain and grief. 

      As to the rehabilitation, again it was suggested by the doctor as preparation for a TURP, just like in your case. What happened is that I just passed on the operation and kept on with the CIC. As to my complete rehabilitation, there was very little in the literature, other than short term rehabilitation prior to an operation.

      You mention a nightly void of 1600-1900ml. That seems like a lot. What is your 24 hour void? How many ml of fluid do you drink in a 24 hour period?

      Hopefully I’ve answered most of your questions but if I missed anything just let me know.

       Jim

  • dhc1955
    dhc1955 jimjames

    Posted

    I thought it might be helpful to add my own experiences with self-catheterization. In May of this year I began having significant discomfort/pain in the area of the prostate. I went to several docs until one of them did a cystoscopy and found the start of a small cancerous tumor requiring later resection (removal). I had never experienced retention, though noticed a small/some amount of reduction in urine flow over the years and especially the last few months prior to the cancer diagnosis.

    The day I had the tumor resection, by cystoscopy, everything seemed OK immediately afterwards when I went home. Maybe 2 or 3 hours after I got home, I began to feel some difficulty passing urine though there was only slight pink color in the urine. Then the blood turned bright red and I knew something was amiss. I called the Doc's office and they told me not to get alarmed unless I could not pass anything. About another hour passed and I felt the urge to pee, but could not. Called the doc and a trip to the ER followed. Full retention....extremely uncomfortable. Apparently I had developed a bleeding problem from the tumor resection. The 'answer' was to insert a Foley catheter and send me home with a couple of bags - one a leg bag and another for sleeping at night. That was MISERABLE. It was one of the most uncomfortable experiences I can recall. After a few days (maybe 5 days) of tolerating this, I called the doc's office and asked for a different 'solution' and they scheduled me to come in to learn how to do self-catheterization. The first time....well, the first few times, the process was clumsy - but from the very beginning I knew this was vastly superior to the implanted Foley catheter and bags.

    My doc's office sent me home with a starter supply and also several different sizes and styles for me to try before making a larger order. What I learned from the process is this:

    * As other have said, try to use the smallest size catheter possible for comfort.

    * It may be necessary to use a larger size catheter if you are actively bleeding and need to pass clots. It is not a bad idea to have a small supply of several sizes on-hand, just in case.

    * The 'basic' supplies needed for hygience are: catheters (of course), alcohol wipes, and lube. I ordered a fairly large quantity of lube packets and alcohol wipes from Amazon to have on-hand. I could post links if anyone wants them and the website here allows it.

    * My catheter supplier is McKesson (found online at Allegro Medical) and they offer many different brands and styles - almost too many - along with photos and information about each one. Like others, I have found the ColoPlast Speedy catheter to be the most convenient. With Speedy caths you do not need the lube packets because the cath is encased in hydrophilic liquid. Just wipe the tip of the penis with the alcohol swab and insert the cath direct from the package.

    * As for sizes, I have used size 14 (which is my default), 16 and 18. When  retention was due to clots not passing, the larger sizes were necessary to enable the clots to exit the bladder/catheter.

    * Even with the Coude tip, passing the catheter past the prostrate is an odd, sometimes uncomfortable, but never really painful, process. It also signals that you are very close to entering the bladder and getting urine flow.

    I wish I had found this website when I was first learning about this. In sum, my experience is that Foley catheters (the kind they place in the hospital and stay for days/weeks) are definitely NOT for me. The small inconvenience and lifestyle modifications of self-catheterizing are VASTLY superior to the Foley option for me.

    Offered FWIW.

    • jimjames
      jimjames dhc1955

      Posted

      Thanks for sharing your experiences. It's too bad that many doctor's reflexively insert a Foley in circumstances where the option of self-catherization would work just as well. In many cases, the amount of freedom and discomfort between the Foley and Self Catherization is light nigh and day. With self catherization, no tube in you 24/7, no bag, no maintenance. It's a simple and painless procedure that with practice takes up maybe 1-2 minutes more time than a normal trip to the bathroom. 

      Did you ever try a size 12F? I was also using 14F for some time (it's the default most doctors give you) when I just figured why not try the 12. Because it's a little more flexible, the first few times went a little slower, especially using my "no touch" technique. However, after that, not a problem and I think "smaller and more flexible" translates into more comfortable and less trauma over the long term. 

      Thanks for the heads up on the larger sizes for clots, etc. I have never had that problem, but based on what you said I think I will order a few 16 and 18 French sizes just in case I ever run into that type of emergency. I already have a box of 14's from before. 

      Jim

    • dhc1955
      dhc1955 jimjames

      Posted

      If you look closely at the tip of the catheter, just behind the Coude, you will see the slots in the catheter where the urine enters. With a larger diameter catheter, the slots are also slightly larger than a smaller catheter (not sure if there is any 'standard' for the slot sizes between manufacturers, so this may be manufacturer-dependent). Depending on the bleeding/clotting, even with the larger catheters, it is possible for the clots to fail to enter the slots and evacuate the catheter. My bleeding/clotting after the bladder tumor resection lasted a solid 2 weeks. During that time it was not uncommon for the catheter to get clogged-up with clots and I would need a 2nd catheter to void completely. Just FYI

      No, I have not tried a size 12. Not a bad idea though.

    • jimjames
      jimjames dhc1955

      Posted

      I went ahead and ordered a few 16FR online to have around just in case. Apparently the 18FR does not come with the Coude tip which I am used to. You definitely should try a 12, you will be surprised how much smaller and flexible they are than the 14. Of course, with a clot or blockage, not the one to use. 

      Was your prostate enlarged and did anyone mention the Coude Tip to you? Are you on a regular cath schedule right now?

      Jim

    • dhc1955
      dhc1955 jimjames

      Posted

      My prostate was/is mildly enlarged. I was looking for the records today and found a trans-rectal ultrasound from March that measured it at 32 grams. I seem to recall the Urologist (different one from the March study) had indicated it at about 50 grams, but that was based on his estimate from a digital exam.

      Re: Coude tip - yes, I have only used self-catheters with a Coude tip. The Physician's Assistant who showed me how to self-catheterize explained the Coude and that is all I have ever used.

      When I was actively bleeding/clotting, the only way I could get urine to pass was with catheters. At that same time I was taking FloMax and after about 2 weeks, I just could not handle the side effects, so I stopped on my own without telling the docs. Interestingly, within a day or so of stopping the Flomax, I was able to pee on my own without the catheter. While I am not trying to indict Flomax in any way - and it could simply be that my body had healed enough to stop bleeding/clotting which was the root cause of my retention - I cannot help but think there is some relationship (possibly incidental and not causal) between cessation of Flomax and resumption of natural voiding. That is a long-winded way to answer your question with, no, I am not currently on a cath schedule.

       

    • jimjames
      jimjames dhc1955

      Posted

      When you had the clotting, which 18 French catheter did you use?

      Coloplast says they do not make an 18French hydrophillic Speedicath with Coude Tip. Their largest size with this style is 16 French.

       

    • dhc1955
      dhc1955 jimjames

      Posted

      You are correct, it was not a Speedicath. The 18Fr was/is called a GentleCath and requires separate lube.
  • rich90688
    rich90688 jimjames

    Posted

    I went from having to get up five or six times per night to pee, to getting up five or six times per night with the urgency to pee, but then not being able to execute.  I was ready to try anything, so I booked a PAE procedure a couple of months out.  I used those months to radically change my lifestyle.  

    Recently, I've been sleeping through the night, still have a mostly weak stream, but I'm learning to live with it.  What I have a hard time living with is the fear of kidney dammage from not voiding enough.  Still, after reading extensively about  PAE on this site, I've decided cancel my appointment for the procedure.  

    Even though my BPH doesn't bother me a fifth as much as it used to, I still may go the SC route.  However, I just read about a new procedure that was recently approved by the FDA, and it sounds like the least invasive, most promising procedure, yet.  It will be available in 2016.  It's called Rezūm therapy.  It uses a convective water vapor device.  Here is an article about the September FDA clearance announcement.  

    http://www.news-medical.net/news/20150903/NxThera-obtains-FDA-clearance-for-Rezum-System-to-treat-BPH.aspx

    If anyone reading this has had any experience with this procedure, as a test subject, or if anyone out there knows anyone who has, please report back. Thanks.

    • michael72708
      michael72708 rich90688

      Posted

      Hi Rich. I wonder, what did you find out about PAE that dissuaded you? I was put off by the radiation and the use of contrast dies. I cancelled my PAE appointment  and decided to use CIC to protect my kidneys and bladder. This basically enabled me to sleep through the night. I'm trying to shrink my bladder using CIC and am waiting for a procedure that I feel confident in. Aside from the minor inconvenience I guess the biggest problem using CIC as a stopgap measure is the risk of UTI. I already had the UROlift procedure and ended up with my bladder not working at all and with beginning of hydronephrosis which I think is reversed now.This resulted from trauma to the urethra from the Urolift. Urolift does not deal with urinary retention so probably I will have to do some procedure but Im not confident in anything to go ahead. I have no frequency or urgency during the day but was getting up every 2 hours during the night. Also using Tamsulosin. Once I started to cath before bed it eliminated the every 2 hour issue and I sleep through the night. What is the SC route? What did you do to make such an improvement in you nocturnia? Do you use CIC? It can protect bladder and kidneys.Thanks,Michael
    • rich90688
      rich90688 michael72708

      Posted

      I found that there were those that underwent the PAE procedure that were still waking up at night to void.  A Chinese study I read stated that 25% of PAE recipients were still suffering from nocturia.  I didn't like those odds, and after my lifestyle changes, the nocturia vanished (knock on wood).

      I had previously gone to a urologist who told me that I was holding 300cc in my bladder.  He gave me Rapaflo and tried to scheduele a TURP for me.  I told him that my father got a TURP, and that marked the beginning of the end for him.  However, the urine retention scared the hell out me, but, after reading about the side effects from Rapaflo, I never took it. I did start taking beta sitosterol and broke out in a  case of hives that was so severe, that I thought I had shingles.  Other than senna tea for constitpation, due to only drinking 2 quarts of liquid per day, I take no pills or suppliments.  

      The "SC route" was just an acronym for self catheterization.

      "What did you do to make such an improvement in your nocturia"

      I did a lot.  I dropped 23 lbs in 8 weeks.  I got rid of all of my belly fat.  I am 6-pack ripped, and look like someone that got a 70 year old photoshopped head placed on a 30 year old athlete's body.

      Gave up gluten, 90% of my processed sugar intake, caffine, any and all red meat, dairy, alcohol other than a glass of red wine, and I'm in the process of giving up poultry.  The mainstays of my diet are soy milk, tofu, salmon, oats, kale and other green or colorful vegetables, and fresh fruit.  I stay away from any packaged foods that require a chemisty degree to understand the listed contents. Out of self-preservation, I became the family cook and king of the iron skillet.  If I eat out, it's at a salad bar or a Whole Foods.  

      I don't eat or drink anything from 6pm to 6am.  

      I decided on an optimum weight, added a zero to that number, and I keep my daily calorie intake close to that number.  It's not a difficult as it sounds.

      I do very heavy anaerobic exercise daily.  I now wonder why I allowed myself to carry around that extra 23 lbs for the last 30 years.

      "

    • jimjames
      jimjames rich90688

      Posted

      If you are worried about kidney damage, you should be having kidney functtion blood tests and ultrasounds on a scheduled basis. The ultrasound will pick up hydronephrosis (water backed up into the kidneys) if you have it. Self Catherization (SC) generally reverses hydronehrosis very quickly.  

      Besides kidney damage, rentention can cause your bladder to expand and lose it's elasticity (atonic or flaccid bladder). And the more your bladder expands, the more retention you will have. It can be a vicious cycle. 

      Self catherization can help protect your kidneys and reverse to some extent your flaccid bladder. In my case, it dramatically reversed my bladder function to the point where I can void normally almost all of the time. So again, depending on your condition, the sooner you start SC the better.

      Other than blood tests and ultraounds, what is your IPPS score?

      Definitions: self catherization = CIC(clean intermittent catherization =SC(self catherization)

      Haven't heard about Rezum therapy but will check it out. Thanks.

      Jim

    • jimjames
      jimjames michael72708

      Posted

      Did they end up taking the clips out from the Urolift or are they still in? Was it possible to self catherize (SC) with the cips in?

      You have said several times that "Urolift does not deal with urinary retention" but I believe the accurate statement is that Urololift did not deal with YOUR urinary retention.

      Unless I'm missing something, all these procedures -- be it TURP, Green Light, Urolift, PAE -- they all are designed to improve or eliminate retention by removing the obstruction.

      The caveat is that in some people, either the prostate obstruction wasn't dealt with effectively enough and/or their bladder had become so stretched (flaccid) that it couldn't empty even after the procedure.

      Jim

    • jimjames
      jimjames rich90688

      Posted

      First, I want to commend you on your lifestyle changes! Urinary issues aside, what you have done will benefit you in so many ways. 

      That said, nocturnia is a strange thing that may or may not be related to BPH. So the fact that 25% of the people who had PAE still had nocturnia, does not surprise or worry me. In fact, I'd be curious what per cent of that same age group without bph has nocturnia. Wouldn't b surprised if it was also 25% or more. 

      As to your nocturnia, since you changed so many things  it's really hard to say what helped your nocturia. It might be a combinaion of things or simply eliminating food and drink from 6pm to 6am. 

      In my case, at times I've had nocturnia and at times I don't. Wish I could say I've figured it out but only have theories. Certainly my fluid intake is one important factor, but I also think a low sodium diet will help. You didn't mention if you watch your sodium, but my guess is you'r taking in much less sodium on your current diet than before. 

      Sodium can cause you to retain water, but what goes in must come out, so eventually it comes out, and sometimes at night. Anyway, one theory for nocturnia. 

      As to eliminating coffee and alcohol, that seems to be the common wisdom, but both I believe have helpe me in terms of being able to empty my bladder more efficiently. Probably because of their diuretic effect, and also because studies show that caffeine will cause the urge to urinate earler, therefore keeping the bladder from over expanding. Currently, I have one cup in the morning, and another before 4PM. Seems to work. On the other hand, urgency and frequency are not my primary problems, and if they were then the coffee probably would be counter productive. 

      But again, congrads on your new lifestyle and on getting rid of that annoying nocturnia. Just don't try and equate eliminating nocturnia with prostate and kidney health. Only reducing or eliminating your PVR will do that. 

      Jim

    • rich90688
      rich90688 jimjames

      Posted

      The diuretic effect is a double edged sword.   Diuretics promote constipation, and there's no sharing room for a full colon, urine retaining bladder and enlarged prostate in my lower tract.  And yes, there is very little added salt in my diet.

      By the way, read the studies about 12 hour fasts (like my no food or drink rule between 6pm and 6am), and you'll be amazed by the weight losses recorded in the studies, even without changes in caloric intake. 

    • michael72708
      michael72708 jimjames

      Posted

      Actually Jim it was my Urologist who performed the procedure who said it will not cure chronic retention. Although I haven't read it in a long time, I believe the info from the Urolift people says the same thing. It does tether the prostate away from the urethra. It doesn't effect the bladder directly of course so that's probably why they don't tout it for retention but I suppose TURP etc doesn't directly effect the bladder either. I see your logic but since they told me that I wasn't expecting it. At that point I was retaining about 700 ml and had no elevated kidney function so, naively, I wasn't super concerned about that much retention. After the Urolift, apparantly the trauma to the urethra caused by the mucking around in there created some swelling which started to effect the bladder and kidneys. I was told I had worse side effects than most. I'm really shocked they didn't standardly have people at least have BUN & Creatinine tests after Urolift cause you may not know what's happening till it's too late. I commend you on all the good information I see you putting out there!
    • michael72708
      michael72708 jimjames

      Posted

      Hey Jim. I reference to those clips they do not seem obtrusive at all. A lot of time the skin grows over them.(Not sure that's such a great thing.)  I was, to my surprise, told by the docs involved you don't need to remove the clips for Holep or PAE which I was considering. Found that the Holep still has 5% or so incontinence and impotence. PAE has none of that but a lot of radiation and exposure to contrast dyes that can effect kidneys. So I went into the same mode as you..... CIC until some procedure  sounds more appealing. Seems your CIC worked way beyond expectations.In any case it influenced me to cath twice daily and that's enabled me to sleep through the night. So I'm basically free of symptoms post Urolift ...as long as I cath before bed and take the Tamsulosin. I'd love to get off the Tamsulosin but I'm so symptom free I'm a bit nervous about giving it up. 
    • jimjames
      jimjames rich90688

      Posted

      For me, coffee stimulates bowel movements and therefore helps constipation. YMMV. I frequently fast 12-17 hours, not so much by plan as by lifestyle. Not sure if the fasting is causes less weight gain, or if it's reduction in calories, but I would have to see the studies as so many of them are inaccurate. But in any event, it does give your digestive system a nice rest. The only problem I have is that if I eat my last meal too early -- or don't get in enough calories -- then I sometimes break down for a late night snack or meal. Anyway, I could go on and on about diet and stuff but it's getting off topic. 

      So back to the salt (sodium). Again, I think a low salt diet has helped my nocturia a lot, but again so many variables like fluid intake and timing. Last night I went to bed at 1AM and didn't have to void until 7AM. No fluid intake after 4PM.  The other night I woke up at 4AM but had some beers after 5PM. 

    • michael72708
      michael72708 rich90688

      Posted

      Hi Rich. Kudos to you for such a turnaround. Few people are willing to really work so hard at it. Seems like it was well worth it. I second Jims suggestion of having BUN & Creatinine checked for kidney function with ultrasound being another poeesibility. That said, CIC will probably shrink the bladder but it could stretch back out after stopping. I'm not sure about that and I'm experimenting with that myself. Jim probably has thoughts on that. Good luck!
    • rich90688
      rich90688 jimjames

      Posted

      About a year ago, after being forced into it by my wife, I had a major blood workup done, and, other than discovering Gilbert's Syndrome, there were no other issues. Until that visit, I hadn't seen a doctor for 12 years.  A year later, after the nocturia started, I visited the operation happy urologist. Other than that, I have had no tests, and have avoided doctors, perscription drugs, and even NASIDs like the plague.

      When I was waking up six to eight times a night, needing to urinate but unable to do so, I was almost desparate enough to try to use a garden hose for a catheter.  Fortunately, at present, I don't have that problem.  I may be playing Russian roulette with my bladder, but my mistrust for doctors keeps me out of their offices, in the gym, and in my own kitchen, where I have a modicum of control over my diet.

      My IPSS score is 20.  Thanks for reminding me to take that again.  It had been much worse.

       

    • jimjames
      jimjames michael72708

      Posted

      I've self cathed about six times in the last couple of months. Once because I had to, and the other five times as a "reality check" to measure my PVR. Residual each time was between 20-100cc, usually 30-50cc. Don't know how durable this will be over time, but as long as my PVRs stay this low, I'm hopeful the bladder will not stretch back. I've also mentioned that in addition to my CIC, I have changed other habits that may be helping some with the PVR. Unlike before, I try and go to the bathroom at the first sign of urgency which is usually when my bladder is holding 300cc of urine. And, if I remember, I will try a "scheduled" attempt if I don't feel urgency within 4 hours. Also, I believe a morning and late afternoon cup of coffee have helped as well by stimulating the detrussor muscles as well as giving me an earlier void signal. I recently read a study that also bears this out. Also, I have been making a conscious effort over the past year to relax my sphicter muscles (in the standing position) when I void. I find this more efficient than "pushing" with the detrussor muscles. 

      Anyway, whatever the reasons, something is working a lot better than

      before, and hopefully it will remain durable. That said, I'm certainly not throwing out my catheters and they are around for back up or if I need them again.

      Jim

    • jimjames
      jimjames rich90688

      Posted

      An IPSS of 20 is "severe". You really need to do regular kidney function tests and and ultrasounds for hydronephrosis (water in the kidneys). You're taking such good care of your body it would be a shame if you developed kidney problems due to neglect. 

      FWIW my IPSS score was also "severe" when I started SC (my ultrasound showed hydronephrosis) but now it' around 7-8 (mild) after a couple of years of CIC.

      You sound like someone who takes pride in their body and will take the steps to control the variables, such as diet, exercise. etc. I'm like that as well, and I think SC would suit both your body and personality very well.

      First, it's a non surgical option, with all those benefits. And best of all, it protects your kidneys as well as any surgery can. It will allow you to empty your bladder completely any time you want in just a couple of minutes. 

      Given your IPSS score, I wouldn't put it off too long.

      Jim

       

    • rich90688
      rich90688 jimjames

      Posted

      You make a lot of sense.  I'm getting closer to taking the plunge, I just have a problem going to someone for instruction, if you get my drift.
    • jimjames
      jimjames rich90688

      Posted

      You have got to bite the bullet. Kidney damage can become permanent. At a certain point you either need an operation, procedure or SC. Meanwhile, you really need regular kidney function tests (Creatine, BUN) as well as periodic ultrasounds to check for hydronephrosis. 

      As to instruction, for all the help they gave me I would have been better off watching a YouTube Video (there are lots of them) and doing it myself. It's all online, step by step. You could start with the Coloplast videos but most of the manufacturers have them, plus a lot of independent stuff.

      As a general guideline, if you prostate is enlarged, then you probably will want to start with a size 14 French with a  Coude Tip. My preferenc is the Coloplast Hydrohillic Catheter. Very slippery, so goes in real easy. 

      Some people have an easy time from the beginning. I didn't, but after a few weeks it started to become much easier. After a few months it will become second nature. Right now, it's like brushing my teeth except it takes less time. It's absolutely amazing how the mind/body adjusts to these things. You just have to get through those first weeks, in a similar fashion as many people have to get past those first few weeks when recovering from an operation or proccedure.

      Jim

    • michael72708
      michael72708 rich90688

      Posted

      Hi Rich,

      One thing about your post. A retention of 300 ml is not that excessive. I had about 700 ml and was fine until I had a Urolift procedure which threw things out of balance. When I read through the medical literature it seems that about 12% of people move from chronic to acute retention. There seems to be no hard number where a procedure needs to be considered but 400 seems more of a cutoff where most urologist start to get really concerned. You could begin cathing once or twice a day to try try to shrink your bladder but the main thing is get regular BUN & Creatinine tests and possibly an occasional kidney sonagram and if you see any changes you need to do something like cathing immediately

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