Need advice on CIC

Posted , 10 users are following.

I've been self-catheterizing since January. I'm in my eighties, and my urologist recommended TURP, but I chose to go with CIC, which is working to my satisfaction--it's easy, no UTI-problems, and takes only 3-4 minutes.

I can still urinate normally, and catheterize only to drain the residual trapped by a lobe of my prostate which keeps my bladder from completely emptying.

My total volume for the day averages about 2,500-3,000cc, and the total volume from catheterizing averages about 600-700cc.

My question is, should I catheterize after every urination, or would 3-4 times a day be sufficient? I'm thinking that when I get up in the morning, before going to bed (so I don't have to get up during the night), and maybe two more times during the day might be enough.

I travel a good bit, and catheterizing while on the road is quite an inconvenience.

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  • Posted

    Charles,

    2,500-3,000cc is a lot, have you actually measured it using a measuring beaker ? How much you use the catheter is something only you can decide because it depends on how much you can get out by normal urination. Jim James in another discussion here recommended keeping your total, at any one time, less than 400cc. If you start holding more than that your bladder will stretch too much, and can become permanently stretched over time.

    Of course it is convenient to CIC before bedtime to lessen the times you have to get up at night. The morning is another convenient time because you have collected a lot overnight. Other than that I do it sometimes before leaving the house so I don't have to do it while out. If you take Tamsulosin (Flomax) you can lengthen the times between when you have to urinate while traveling. I carry a backpack in my car with supplies for when I am out.

    Thomas

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    • Posted

      Thanks, Thomas,

      When I started CIC I did use a beaker to measure my output, so the figure is accurate. I exercise quite a bit, and drink a lot of liquid (including coffee, a know diuretic), and right now I am urinating 6-7 times a day, and catheterizing 4 times daily. I do use Flomax, and have done so for 2-3 years.

      I bicycle 2-3 times a week, and am out for 4-5 hours. This is when it would be very inconvenient to catheterize.

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    • Posted

      I'm not sure what Frank haematuria is, but surmise it is some kind of bleeding. I did have some bleeding caused from cycling with bladder stones bouncing around on some of my longer rides (50+ miles), so had to have that taken care of (the operation and recovery was a nightmare!)

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    • Posted

      just a fancy name for visible blood in urine. i am suffering an episode currently but i don't have stones. i was therefore wondering whether anybody else who cycles has had an experience due to the intensity of their ride. many thanks for the response though.

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  • Posted

    The coloplast speedicath male compact are the best ones I've found. I use them all the time - but they would be perfect for travelling.

    Not sure re how many times as I am unable to go naturally at all. I think the less the better but your urologist should have some input.

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    • Posted

      I'm stuck in an HMO (Kaiser), and the only catheter-option they off in the program is Coviden Dover red rubber, reusable catheter.

      I'll check on the Coloplast speedicath. Do you have a U.S. source that you use, or one that you can recommend?

      Thanks

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    • Posted

      Charles,

      Maybe you can explain to your Kaiser doctor that you need catheters you can use when you travel. All you need is one prescription to get the catheters coming. I don't know how long a prescription is good for. I got my prescription almost a year ago, so maybe the distribution company will ask for a new one at a year. I started with the red rubber catheters at my distributor and switched to Coloplast Speedicath and others since then. The only requirement they hold me to is the coude tip.

      If you have to you might pay to see a Urologist outside Kaiser just to get the prescription to get the shipments coming.

      Good Luck,

      Thomas

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    • Posted

      I did explain to his nurse that I needed a better type of catheter for travel, and they sent me more of the same. I called the company, and they said the standard red rubber type they gave me was fine for travel; all I had to do was moisten them with water, and be sure sterilize them before lubing them and using them again.

      I asked about the possibility of a UTI, if the water or other conditions I encountered when traveling were contaminated, and they had no answer.

      I might check to see if I can get them through Kaiser by paying extra.

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  • Posted

    charles11940,

    .

    I am with Kaiser too. You are stuck only if you allow yourself to believe that you are stuck.

    .

    I have not been impressed with Kaiser urology in my area. I was guided through my BPH research process by a family member who has been an MD for over 40 years and I have known for over 60 years. He is critical of Kaiser urology too saying that their urologists have their hands tied because Kaiser is very slow to adopt new medical procedures that independent urologists are now using.

    .

    I chose to have an Rezum procedure done outside of Kaiser at much less cost (and much less complications and morbidity) than TURP where you have about a 10 percent chance of ED and a 100 percent chance of RE. The Rezum procedure cleaned up my BPH without any RE. I see no reason to have a TURP when there are more modern procedures available with less complications and morbidity.

    .

    I have no complaints about the Coviden Dover red rubber, reusable catheters that I got from Kaiser and used for over 9 months before my successful Rezum procedure. Before and after each use, I would soak my catheter in 70 percent isopropyl alcohol and wash myself with anti-bacterial which prevented UTI's.

    .

    I am athletic too. During the 9 months that I was self-cathing, I stopped my caffeine, limited my alcohol, reduced my sodium input, and developed a better balance of how much I drank when exercising 3-5 hours at a time. The result was self-cathing 4 to 5 times per day and keeping my self-cath volumes under 400 ml.

    .

    Your volumes of 2,500-3,000 ml is a lot to drink each day. Most people only need to drink about 2,000 ml each day. If your self-cath volumes are 600-700 ml, your bladder has problems too. It is critical to keep your self-cath volumes below 400 ml if you expect to have any bladder recovery from self-cathing. Good luck.

    .

    Steve

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    • Posted

      Thanks for the comprehensive response. I, also, am not generally a fan of Kaiser. It's assembly line medicine, and you have to know how to manipulate the system. I've been with them for over 50 years (!), so am reasonably adept at it.

      My urologist, whom I'd had for years, screwed up years ago, when he failed to do a simple, non-invasive scan of my prostate, which would have revealed the lobe that was isolating the portion of my bladder next to my kidney ureter outlet, which allowed a pool of stagnant urine to form, and this is where the stones formed, NOT in the kidneys. I ended up having to have bladder-stone surgery, which was a nightmare.

      As a result, I wasn't about to let him perform a TURP procedure on me!

      At age 83, I still cycle 4-5 hours 3x a week, so I drink a lot of liquid. I still drink coffee, but have given up beer (sob!), but at my age, I've decided not to have ANY surgery, especially a TURP procedure.

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    • Posted

      Charles,

      When you say " the lobe that was isolating the portion of my bladder next to my kidney ureter outlet" do you mean the prostate median lobe ? If so, it is next to the bladder outlet, not the kidney outlet. Many guys have an enlarged median lobe that causes some procedures to be less effective, like PAE, and Urolift, unless you find a doctor who can do the newest procedures designed for median lobe.

      If you don't care about retrograde ejaculation (RE), laser TURP may not be that bad of choice for you. If you want to avoid RE, Rezum ,or PAE for median lobe, or Urolift for median lobe, (MEDLIFT), or Focal Lase Ablation (FLA), may be the way to go.

      I think I have heard of people on this site who have had PAE within the Kaiser system. It may be difficult to find a Kaiser doctor who can do PAE for enlarged median lobe though. Outside of Kaiser, Doctor Bagla in Virginia, Dr Isaacson at Georgetown University, and possibly Dr Picel from UC San Diego and Stanford have done PAE for median lobe, but if considering this you should confirm with them, about the median lobe, you may also have to pay out of pocket.

      There was a woman on this site who was looking for a solution to her 87 year old father's BPH problem, he was paralysed on his right side from stroke, due to a previous general aesthetic . She opted for PAE with DR Bagla and it was sucessful.

      An enlarged median lobe can be seen with a cystoscope, or ultrasound scan, or most clearly with MRI, especially 3T MRI.

      As far as getting other types of catheters from Kaiser, you may have to explain that it is a medical necessity when you travel, so that you don't get UTIs, considering contaminated water supplies and lack of water, soap, paper towels, etc., when traveling.

      There is one person on this site, who has said he tells a distributer company he has a prescription from a doctor, and they don't check it, but just send him the supplies. However you would have to pay for the catheters yourself.

      Sorry for the long winded post,

      Thomas

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    • Posted

      Thanks for the detailed response, Thomas,

      I suspect I have a median lobe, but am not sure, as my Kaiser urologist never initially ordered an ultrasound scan; but wherever the location of the lobe, it was causing the retention of a pool of urine that was not getting flushed out on a regular basis, and this is where my bladder stones formed.

      It was when his nurse finally did a two minute scan in his office that he determined that I was retaining about 250cc in my bladder after normal urination. He said that they did not like to see a residual amount greater that about 100cc.

      It is now obvious to me that this simple scan should have been done years earlier (he has been my urologist at Kaiser for well over 10 years!).

      Once this large residual retention amount was discovered, he said I should have a prostate procedure, and the most obvious type was TURP (non-laser, the "Roto Rooter" procedure), and then wanted to order a couple of invasive pre-op tests (including the cystoscopy).

      It was then that I opted for CIC. At age 83, I did NOT want to subject myself to this procedure; and with my less than satisfactory history with him, I figured I had nothing to lose; and so far, after about four months, CIC has been a fairly easy procedure.

      Several guys on this site have indicated that they have been doing CIC for years, and have no complaints.

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    • Posted

      @charles11940: he has been my urologist at Kaiser for well over 10 years!

      .

      What you are writing is truly amazing. As I wrote earlier, "I have not been impressed with Kaiser urology in my area."

      .

      Doing an ultrasound scan for BPH cases is a very basic and standard procedure. That you did not have the ultrasound scan done years earlier is truly amazing. I had my ultrasound done the first day at Kaiser.

      .

      The cystoscopy would also identify the median lobe which I had done by a urologist outside of Kaiser after I decided on the new Rezum procedure which Kaiser does not do as they only do TURP in my area.

      .

      After 10 years with one that has screwed up, it is time to find another urologist. Why are you staying with this one? There are more urologists at Kaiser to choose from. It is your decision about your health. Good luck.

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    • Posted

      I'm staying away from the entire urology dept. at present, as the CIC seems to be taking care of my problem, and is a minor inconvenience I can handle.

      At 83 years of age, I'm not about to let them do a standard (non-laser) TURP procedure on me.

      The most likely thing that would require that I contact them again is a UTI, which would only require a urinalysis and antibiotics; but since I am very careful about hygiene procedures, I should be able to avoid this problem.

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    • Posted

      charles11940,

      .

      I am curious why you are staying away from the entire Kaiser urology department? For me, Kaiser is just my "stop-gap" insurance before Medicare as they were the least expensive. I have found their primary care to be OK, but their specialty care which in my case was urology was disappointing.

      .

      If you are good about your hygiene, then you should avoid UTI's, Again, Rezum worked for my trilobe BPH obstruction. It is a minimally invasive outpatient procedure that is done right in the doctor's office, much less expensive than TURP, and has minimal complications and morbidity.

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