Self Catherization. An on “on/off” strategy.

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For those new here, three years ago I went into what can only be described as near chronic urinary retention where my bladder had lost so much tone that the only way I could void was to push hard on my abdomen (Crede Manuever). That meant I literally had to pump the urine out.

Not as many options then, and my doc suggested TURP, the only procedure his hospital performed. I ended up deciding against TURP and went on a program of self catherization (CIC) starting at 6x/day. My doctor said it was my choice, but unless I had an operation I would never be able to void normally without a catheter. He was wrong.

Three years later I am voiding normally without a catheter and for all practical purposes have almost no symptoms of LUTS/BPH. If interested, more details in the self catherization threads I started.

One technique I used as part of my  bladder rehab process is for lack of a better name the  “on/off” strategy. Actually in the beginning it was less of a pre-planned strategy and more of what I was doing, but then as results came, I made it a strategy. So here it is. YMMV.

Starting around the six month mark, I would switch from 4-6x daily CIC to either once or twice a day, or no CIC. Sometimes I stayed off the cath for a day, sometimes for a week, sometimes a month or two.

During the off the cath periods, I would assist my voiding sometimes with double or triple voids, easier voiding positions (reclined back in a chair) and at times some gentle Coude (mostly tapping). And very important, I would check my PVR's periodically via catheter to make sure my bladder wasn’t getting too stretched out. Void logs also helped in this regard.

Then, at a certain point, usually when I got fed up with the off the cath route smile , I would go back to an aggressive cath schedule of 6x/day for a period of time which was really much easier for me. Just cath and be done. No double, triple voids, etc.  So that was the cycle, off the cath, then back on agressively. And then I would repeat. At one point I used daily Cialis during the non-cath periods but most of the time not.

My theory, and it’s only that, is that the on/off CIC helped my bladder rehab in the same way as muscle development is helped by hard/easy days or weeks. The time off CIC was the “hard” period that stressed my bladder muscles. The time back on CIC was the “easy” period that gave it a rest.

Obviously, if you’re not having any natural voids, or very little natural voids, this will not work. However, if you have a decent mix of natural versus cath volumes, you might give this a try. And again, can’t emphasize the importance of periodically checking your PVR through void logs and periodic reality checks of self cath’s during the “off” period.

Alternatively, you could check your PVR at any point in time with a home bladder scanner which I didn’t have then, but have recently purchased.

Jim

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  • Posted

    Should add that it would be prudent during any extended "off" periods to check your kidneys both via bloodwork and ultrasound to make sure they are functioning properly that that there is no harmful reflux going on. 

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  • Posted

    Quite a fascinating story, congratulations on making it work. Drawbacks are you need to develope a fair expertise and, I imagine, a supportive urologist, plus some technical equipment which again takes skill to learn to use well. The larger concern in my eyes is the fairly inevitable times you will have a UTI no matter how careful you are, plus the possibility of occasional damage to the internal wall of your bladder.

    I would assess the risks you run are on a par with those of the least harmful of recent urological interventions, which, if successful, would give you a happy permanent solution, where you could just forget it all happened. My best wishes to you, and I know you have been instrumental in saving many, many men from a gruesome TURP experience.

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    • Posted

      Hi gbhall,

      Thanks for your nice words but let me run down each of your concerns "drawbacks" about self cathing (CIC) because for the most part they are non issues. 

      "Fair expertise" -- Not rocket science. A few weeks "break in" for some, but in most cases smooth sailing after. Over time, became as quick and painless as brushing my teeth.

      "Supportive Urologist" -- More accurate would be a urologist who tolerated my CIC. What I learned, I learned myself.

      "Technical Equiptment" -- If your're referring to my bladder scanner, I've only had it for a couple of months. Didn't have it at all during the time I was self cathing. Not required.

      "UTI's" -- 1 a year*. Not ideal but acceptable to me. I've seen less reported here, some may have more. But "yes" UTI is mentioned in the literature as one side effect of CIC but keep in mind a lot of those stats are from the SCI (spinal chord injury) community where the process is different and IMO more prone to UTI.

      "Bladder Damage" -- It's possible you could irritate your urethra, or even cause an easily reverisble "false passage", neither of which happened to me. But I don't see how you could damage your bladder wall, although I suppose anything is possible. 

      Hope this helps clarify.

      Jim

      * I'm not counting the first three months where I had a couple of UTIs that could have been avoided (at least one of them) had my uroloigst been on top of the situation. If you take this into account it would be 1.5 a year if my math is correct. 

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    • Posted

      Besides what Jim says you can look up the web sites of companies that sell catheters they give instructions - basically it's common sense, wash hands first before touching anything and so on.

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    • Posted

      So, the ER doc said, “bad luck” I had bladder damage from the Foley removal and my first try at self-cathing.

      Until 1 September 2018, I was a 67-year old with the energy of a much younger man; and, healthier, for my age, than anybody I knew.  Sadly, now, I need more-experienced “elders”, perhaps, you, to help me see the exit sign from having to carry a in-dwelling urine bag the rest of my life.  I am feeling "lost".  Here's the timeline:

      1 September: Ate two plates of spicy Indian food and drank maybe 4 glasses of water during the evening. When I got home I suddenly could not pee nor poo. On the advice of dial-a-nurse, I went to Emergency at a city hospital, around 1am. They took blood work and ran tests. Approximately 4pm a doctor examined my prostate and declared “it's huge”. He ordered a sonogram (ultrasound imager for bladder) and the sonogram nurse said, “You're full - you just bought yourself a cathether”. The 2-liter bag was nearly filled. She strapped on a leg-bag connecting to the Foley in-dwelling cathether. The nurse also gave me a 2-liver overnight bag, and instructions. I asked another nurse “how long will I be wearing this?” He said, “one day to a few months”. I went home.

      Did a whole bunch of research.

      I read one more more forum posts that if a bladder gets more than 1.3L (1300ml), it doesn't go back to it's normal compressing function.

      Bought a lot of natural supplements, ate pumpkin seeds like crazy, etc. etc. while I waited for my Urologist appointment. The uro doc said my prostate was 50ml with no nodules, i.e. no cancer. She opined that my blockage was a “one time” most likely. She actually wanted to remove the cathether at the appointment. I said, not today, as I'm waiting for my 30 intermittent cathethers ordered online. She said that the CIC instructions would be given by a home-health department in another suburb. However the home-health department was very cagey - sounded like they didn't have anybody who was able to teach self-cathing. After several follow up calls, I gave up on the home-health teaching people which operated from a community center.

      My speedy hydrophilic CIC's with coude tip, arrived but I couldn't wait psychologically, so I watched video's and read every post in the forums about self-cathing.

      At noon, this week. I went to a walk-in doctor/clinic on the advice from the uro, to have the in-dwelling cathether taken out. When the doc pulled it out, it hurt a lot. The doc said, “I hope your uro is right”. My penis was bleeding slightly. By 3:30pm I hadn't peed once and didn't feel like peeing even. So, I tried my first self-cathing. There was 3” of urine but the rest was bloody urine. The coude tip had mucoid blood. So, I taxied to ER at 5pm. The ER doc phone-consulted with several urologists and nurse did tests on the cath that I took with me. Blood work was also taken. I was worried about the bladder getting too full again, and lobbied for a sonogram. At 7pm, the sonogram printed 397ml in my bladder -- this seemed much too little for 7 hours of not peeing.

      My penis has a laceration below and under the urethra opening apparently from the catether removal.

      Key info came from the male cathing nurse as I he finished installing my second Foley. He said that I was too tense during the removal, and my spincter grabbed the cath. He said that I should have asked the doc for an anti-anxiety shot, Atevan, or something like that, before the Foley removal. He demonstrated with his hand as to how smoothly the Foley should have just come.

      My reason for joining this forum is to know if there's a solution to having no Foley in my bladder.   I've gone to a Traditional Chinese Medicine doctor, and got the three herbal remedy bags to boil.  He says that I will be "good" in days. Is there any way to know, beforehand, if the Foley is removed -- that I won't have bladder retention again?  

      Thanks in advance for all replies.  

       

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    • Posted

      Bob,

      Is it possible they did not deflate the foley balloon before removing the catheter ? It would definitely cause damage if they pulled it out without deflating the balloon. I have also heard of the balloon being inflated while in the prostate, instead of the bladder, that can also cause damage.  What type and size catheters are you using for self catheterization  ?  Make sure you have the coude (bent tip) in the correct orientation, the mark on the funnel end should be up, facing the ceiling.  Read any instructions that come with the catheter. Try Bard gentlecath red rubber coude tip size 14, with the water soluble lubricant, like KY Jelly.  

      If you have to use a foley catheter again ask for the type with a shut off valve at the end rather than a urine bag. It's more comfortable than wearing the bag.

      Where are you located ? 

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    • Posted

      Hello Bob - I am sorry to hear about your problem. Please cut and paste your story into a new thread with a new title and you will get more responses. Also, did you get a cystoscopy to see directly any damage? Good luck.
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    • Posted

      1. It was removed by a doctor at a clinic.  I mentioned the balloon several times and he said he would deflate it.  

      2.  A Speedi 14FR with the coude, and I saw the mark, and it was oriented correctly.

      3.  Because my second cath has stopped once, I prefer to see the bag and gauge my kidney function.  It was only late yesterday and today that I could see that the urine volume were approximately normal in quantity, rather than greatly reduced since I had the bleeding from the Foley removal and self-cath attempt.

      4. Canada

       

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    • Posted

      Will do, thank.  Not yet on cystoscopy.  My uro appointment is next week.  I am nervous with doctors now that I've had problems.  My family doctor says cystoscopy "won't be fun", and I'm a Chicken Little when it comes to any pain  .. so much so that I learned self-hypnosis at age 11 to avoid dental work.

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    • Posted

      Bob,    You can purchase a container, marked in ML and or OZ to measure the amounts.  I got one from a dollar store for $1.10.  Yes, in California the sales tax is almost 10%.

      Thomas

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    • Posted

      Where in Canada - I am near Toronto.I had a flexible cystoscopy that took less than a minute and no discomfort and showed any bladder neck obstructions like a median lobe and the health of the bladder and the urethra and prostrate. Never get a rigid cystoscopy but flexible ones are quick and easy and very helpful. If you went into retention from drinking a lot of fluid quickly it may be a median lobe which can be easily treated.
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    • Posted

      Hi Bob,

      Unfortunately as is often the case you're get not so great advice most probably because the people you're asking are not as familiar with the problems and solutions. 

      First of all, bloody urine when you first start to self cath (CIC) is perfectly normal for the first few weeks. As to any damage done by the Foley, that should be analyzed only by urologist who can tell you whether you can go ahead with CIC now or wait until things heal up.

      Once you've gotten the green light, CIC is usually the optimal non surgical solution for someone like yourself. No bags, no incision in the abdomen. I've been self cathing for over 4 years now and it has given me the freedom to empty my bladder completely any time I want and at the same time protect my kidneys from any damage. 

      As to the 1300ml thing, don't buy that at all. No guarantees but the bladder is very resilient and I would not rule out at least some degree of rehab if it was filled to 1300ml or even more. At this point I would completely forgo Chinese Medicine as you need a more immediate and more agressive solution.

      Should the damage make CIC impossible now or the Foley painful, ask your urologist about a suprapubic catheter which you could use temporarily until things heal,

      Jim

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    • Posted

      Bob - there is no greater coward than me in the world! But as they say necessity is the mother of invention. The first time I was shown how to CIC by a nurse I fainted and afterwards cried like a baby. But the alternative was much worse and with the help of jimjames and others here I learned to do CIC 2 years ago and now it is just like brushing my teeth!

      I too was so scared o getting a cystoscopy. But the new ones are just fiber optic threads with a tiny light and camera at the end. The neat thing is that there is a monitor by your head so the doctor gives you a tour of your urethra, prostate, bladder neck and bladder wall. I didn't even know the little cable was inside. There is no feeling at all and it is really important for the doctor to get a direct look. I got a copy of the cd and often look at it If you are near Toronto le me know and I will send you a private message with the name and number of the doctor who did mine and you can ask for a referral.

      Best thing now is that jimjames has found you. Listen to him - he has saved many men from terrible things including myself. Howard

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    • Posted

      Hi Jim, to tell you the truth, I'm scared off CIC, or even doing anything right now, and even Western doctors,, having lost maybe a liter of blood, and the rip on the penis from the Foley removal by a locum doctor.

      It was my uro who opined that I would be back to normal after the Foley removal.  Then, the ER doc, who was stumped and consulted urologists, just shrugged, "bad luck".  My family doctor, who I had updated by photos and text messages, said, my situation is "very unusual".  

      Then, there's the posts in this forum about "false passages" that the Speed cath could have gone into.

      When the male nurse was inserting my second Foley, size 14FR, he was surprised that there was, initially, no flow, and he thought it had maybe kinked, or blocked by blood.  I had mucoid blood in my urine, and the color was so dark that any blood clots could not be seen.

      PHOTO:  The ER doc was considering blood transfusion since i was leaking this blood.

       

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    • Posted

      Was active yesterday.  Noticed that flow became minimal when I stood up for three hours.  Flow normalized, by releasing a quantity of pent-up urine, when I sat down later.
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    • Posted

      Nice!

      What about the "false passages" mentioned in posts?

      Photo:  My blood from self-cathing try-1, Speedi with Coude bent tip.  Maybe I should not have done this given the blood and ripped penis skin from the Foley removal.

       

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    • Posted

      I understand you're scared off CIC but then what is your plan moving forward? Sorry if you have already mentioned your plan but I haven't been around for a few days.

      jim

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    • Posted

      Hi, Bob,

      Sorry to hear of the trouble you've been having. It sounds like you're getting on with your research, though, and that's a good thing.

      I probably hold the record for AUR on this forum--at 7,000 ml. That was 2 1/2 yrs ago. Since then I've seen 7 urologists, including 2 at the Mayo Clinic, and all but one told me that I'd never be able to pee on my own again because my retention was so extreme. I spent 3 months with Foley catheters in because the uro who installed my 1st foley didn't know what he was doing--it was the most pain I had ever felt. I figured that CIC would hurt just as much, and felt I couldn't do that to myself 4 to 6 times a day.

      Like you, I was in great physical condition, and this retention/urinary problem blind-sided me. I became depressed, thinking I was losing my quality of life. It became clear I needed help, so I started to see a counselor. It's one of the best decisions I've ever made. My counselor--and guys on this forum--helped me figure out which treatment plan would be best for me. I'd listen to my uros, but I'd research their recommendations. Then I'd make my decision.

      In the beginning, the sight of blood in my urine freaked me out. Later I learned that a tiny bit of blood in the urine can look like a lot more than it is. If you or your uros are concerned about passing blood clots, you can always use a larger catheter. In the beginning, they had me use a FR18 foley, because the eyelets are larger and allow for less blockage.

      Sadly, medical people are not equally trained when it comes to catheterization. The first uro nurse who trained me in CIC didn't know what she was doing. I ended up in the ER four days later with AUR again. I changed uros, and my new uro's staff is very well trained. They know how to install and remove foley catheters without pain! And they're more knowledgeable about CIC.

      About 1 1/2 years ago, I had bladder stones removed. They put in a foley catheter after the procedure. For some reason, the nurse who installed it taped the tube to the head of my penis. The nurse who came to remove it, didn't realize what had been done (nor did I), and when she attempted to pull it out, she almost took off the head of my penis. The pain was so intense that I feared to look at what she'd done. Thankfully, I was ok, but man it hurt for some time. Again, all medical staff are not well trained in catheterization. Try to find the best trained people you can.

      After I found help on this forum and a well-trained uro staff, I learned how to CIC. Been doing it for 2 1/2 yrs now. Early on, I did have a couple of times when no urine flowed when I inserted the catheter. The 2nd time, I happened to cough while the catheter was in, and the urine came out. I think my bladder needed a jump start after being stretched so far.

      BTW, I asked each uro what his plan for rehabbing my bladder would be. Each uro gave me a blank stare--and no answer. That's when I realized that they're basically surgeons. So, I started using Jimjames bladder rehab plan. And I had a PAE done. I now pee several times a day on my own. It's not enough to completely empty my bladder, so I also CIC 4 to 6 times a day. I can pee on my own anywhere from 50 to 200 ml. It's taken time, but I see progress.

      Keep asking questions and keep researching. You're on the right track.

      Stebrunner

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    • Posted

      I started with a  straight catheter and also had a false passage but it healed over time and once I got on the coude tip (I use Speedicaths 14fr) I haven't had a problem since.

      Bleeding is normal when you first start CIC - it is the same thing as when you fist start to floss your teeth. The urethral lining is very sensitive and full of capillaries so do not worry about that - it will go away over time.

      The important thing is not to force the catheter if you feel a lot of resistance and pain. Just take it out and try again later. It helps to do pelvic floor muscle relaxation and deep breathing and relaxation during CIC helps. I find when I cannot get in I just try again later and take 2 nsaids as well.

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    • Posted

      Thanks .. I'm concerned about this "false passage".  How does one not kill oneself with this?   

      Re: Try again later - My urine was blocked and I had blood.  The mucoid blood.  I thought these hydrophilic coude-tipped CIC's were idiot-proof.  I hadda' run to ER.  

      Re: Deep breathing.  I have today learned about Wim Hof and am enthused, along with the knowledge about the "size of the hole, and not the size of the donut"; will do visualization and Wim Hof breathing.  Already, I feel much better.  (Having learned self-hypnosis at around age 11.)  Along with prayers, too. Thanks sooo much.

       

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    • Posted

      OMG.  

      Thanks for the 7-liter info .. gives me hope that I can someday be "normal".

      I read the "cough" technique and was coughing to get the coude tipped Speedi in.

      Your history is maybe one reason a retired GP doctor, age 77 but looks like 55, said to our (science-oriented) group:  "Whatever happens to me, don't bring me to a hospital."

      Wouldn't a bladder scanner be helpful, if not essential, to CIC-ing?

       

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    • Posted

      Thanks for your thoughts.  Right now, I don't have a plan.  

      In my mind:

      1,  Long term use of a Foley is detrimental

      2.  I'm in a Catch-22 even if natural or Chinese herbs "cure" my inability to pee.

      3.  I had two bleeding episodes, and one where my blood pressure dropped a lot.  I should probably let the bleeding flesh, inside and outside, both heal?  But, how long?  Since apparently long-term Foley is detrimental.

      4.  I'm concerned about the "false passageways" should I CIC .. maybe I should get a flexi-scope done to see what my internals are like

      5.  I'm concerned about the quality of the medical people around me.  They couldn't even find a CIC trainer for me, that's why I plunged ahead with the Speedy 14FR on my own.

      Any comments and/or suggestions are appreciated.

      Thank you again!

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    • Posted

      Bob - If you live in Ontario you have access to visiting home nurses called continence nurses who are specially trained in all things related to peeing problems. They can help you with Foley's and CIC and many other things. The service is "free" (we pay with our taxes) and they come as often as you need them. they also provide with you supplies. I used them when I first got started and found them very helpful and knowledgeable. Let me know and I can provide contacts for you via a private message. Howard

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    • Posted

      I tried the 'cough' technique once when I was having trouble getting a catheter to go in, but then I realized I had just coughed all over my previously-sterile catheter, so I threw it away and started over.

      I've frequently had trouble getting catheters to go in.  They sometimes hit what seems like a brick wall at the external sphincter, just before entering the prostate (guessing here).

      For some reason I've never been able to get any Speedicath catheters to work.  The Speedicath people were very nice and sent me a bunch of samples of all their types and I could never get any of them in.

      I've had hit-and-miss results with other brands.  The ones that work most reliably for me are the Lofric Origo 14 coude.  They're pricey at $6 each, but after I stopped ordering them because of the price a Lofric rep called me and dropped the price to $2.50 each, so I use them exclusively now.

      One trick that usually works for me if I can't get the catheter in is to back it out just an inch or so, take a deep breath and let it out while I try and relax my urinary tract as if I was trying to pee.  Then when I advance the cath it usually goes in fine.  It also seems to help if I point the tip downward while I (gently!) push the cath in.

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    • Posted

      Hi, Bob,

      A bladder scanner can be helpful, but I don't think it's essential. When I'm voiding or cathing at home, I use a measuring cup (plastic that holds about 500 ml). Before I CIC, I always try to naturally void. Then I write down the amounts in a cathing log. Between CICs, I usually do another natural void, and I write that down, too. This helps me keep track of what's going on with my bladder. I try to keep my bladder below 400 ml, but sometimes my total voids (natural plus cathed) range between 400 to 550.

      After doing CIC for a while, I've learned to read my body. My bladder now signals it's time to void at about 200 ml. Depending on the amount of my natural void, I can tell about how much is in my bladder. For example, if my natural void is about 50 ml, then my total void will be about 200 to 250. (Your mileage may vary-lol!) I can then decide if I want to cath or wait a while longer. I also know that exercise will stimulate my urine production, and I may suddenly have a large natural void and large total void. So, I try to cath before I go run or hike.

      Stebrunner

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    • Posted

      Hi George, Steb and Bob,

      I've been CICing for 2 years now, 4 times/day and I've only used Speedicath  14fr coude. I tried the cough method early on but it didn't help much. I have 2 huge side lobes to my 240gm prostate  which makes getting the catheter in difficult.

      Early on it used to take up to 5 minutes or more to get the catheter to slip past my prostate into the bladder. Sometimes in the middle of the night I would fall asleep on my feet waiting.

      But then I found 2 things which really helped and now I cath in less than a minute with no effort at all.

      The first is I added some gel lube - Surgilube - to the sleeve after I opened it part way. This made it slip in much easier.

      The second thing which really helped was starting with jimjames dive bomb method to get the catheter started ok and then when it was about 1/3 in slowly bringing the catheter down and level for the next third and then ending up with the catheter pointing straight down into the toilet while I slowly push up for the remaining third until it slips into the bladder. When I do that the last third is really easy.

      Also for the first third I keep my index finger over the green cup on top to help stabilize the 16in catheter while it goes in for the first third.

      Howard

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    • Posted

      Hi Bob,

      Asking the right questions are half the battle and you are asking the right questions.

      1: Maybe not detrimental but not the most desirable option for most.

      2: You are beyond the Chinese Natural Herbs Stage. I would put your energies and focus elsewhere for now.

      3 and 4: See a urologist, get scoped and/or proper imaging to find out exactly what is going on inside. If it is a false passage it can be easily fixed and healed. 

      5: You need a good urologist but they may not be as versed in CIC as you would like. Fortunately, you can learn yourself like many here, including myself, have. We all are here to help you out in that regard.

      Jim

       

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