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    Advice on Low-Compliant Bladder (Self-catheterization)

    Hi Carecure,

    Don't want to go into this urologist appointment on Thursday completely clueless.

    I am 16 years post, T5 incomplete, been diagnosed with a low-compliance bladder (high pressures), plus low capacity. I am able to void, and am not incontinent.

    Chief complaints:

    1. Sometimes I will go up to 13 times a day. It is highly correlated with stress and anxiety. In my case, today for example was a good day. I only urinated six or seven times. That to me is ideal for my situation.
    2. I spend a lot of time in the bathroom. I sit there waiting to urinate, sometimes upwards of 15-20 minutes. What helps me go? Throwing water on my hair and face, darkness, and listening to/touching running water. These I consider stopgap measures, because in the end, I can't always be in a place where I feel safe and comfortable enough to relax my bladder.
    3. I don't really push urine out so much as I relax and let my bladder empty as much as it can. In other words, while I can voluntarily keep myself from urinating, I can't really voluntarily decide to go at a specific time. I kinda just wait for my body to work.
    4. Stop and start. Often my stream will be weak or interrupted. The stop and start is particularly annoying. I will be urinating, then I will clench either because of outside stimuli that disturb me (a slamming door, for instance) or because my body just can't handle urinating so much. That's a little hard to explain.
    5. When I get stressed, I urinate much more frequently and I am able to feel that I am not completely empty. In certain situations, I will digitally stimulate using my finger to put pressure on the bladder. While this always works and relieves my urge to go, it is relatively messy and takes effort. I only do it in case of emergency.

    Goals: To go less often, to spend less time in the bathroom, so I can do what I love--make music.

    My urologist told me if my medications didn't make a noticeable difference that I might consider self-catheterization as an extra tool in my toolbox to improve my quality of life. I have been taking Alfuzosin and Gemtesa for a couple of months now but haven't seen any improvement.

    I have been cathed many times before since the night of my accident. so I at least know how the discomfort feels. I have had urodynamics multiple times, plus a cystoscopy.

    I would love advice that would somehow improve my life enough that I don't need to learn to catheterize. However, I am mentally preparing myself to learn--not to make it a habit, but to make it so that I have an option if I need it.. Any tips or tricks to know before I get started?

    Questions about cathing:

    1.How long does it take?
    2, Does it eventually stop being uncomfortable?
    3. After how long does the discomfort fade?
    4. Can men catheterize themselves while sitting on a toilet? I don't use a wheelchair, but standing and balancing in front of the toilet is not really an option.
    5. Seeing how I have managed this long without it, should I consider it an emergency item?
    6. How scared should I be?
    7. Are catheterization bags/kits affordable and portable? Where do you recommend I purchase them?

    Final notes: I don't want to have to do this. But I am prepared to try. Any advice at all would be appreciated so much. Anyone in a similar situation? What did you do?

    I want to stay sensitive to and respectful of everyone's experiences here.

    Thanks for reading.

    Dave
    "Leela, you look beautiful. Incidentally, my favorite artist is Picasso."

    #2
    Alfuzosin is an alpha sympathetic blocking drug usually used for prostatic hypertrophy. It helps to relax the urinary sphincter, but does little for a high pressure spastic bladder. Gemtesa is used for overactive bladder syndrome, but rarely does it help much with bladder spasm or high pressures due to SCI neurogenic bladder.

    Self intermittent catheterization may help you empty when you cannot on your own, but it won't treat bladder high pressures. Such pressures (over 40 cm. H20) are potentially dangerous to your kidneys and significantly increase your risks for UTIs as well. Have you been tried on other anti-cholenergic drugs such as Ditropan, Detrol, Sanctura, Vesicare, etc.? Those are often used in combination with intermittent cath; the drugs to keep the pressures low while maintaining some capacity, and catheterization to empty the bladder fully. Has your urologist discussed the pros and cons of bladder Botox with you?

    Most people, men and women, who self catheterize do it while sitting, either in bed, wheelchair, or on the toilet. You can cath into a urinal if you can't get to a toilet or are someplace without an accessible toilet.

    Most people with SCI/D don't have sensation so discomfort with cathing is not such an issue. Using a smaller catheter (12 or 14 Fr.) and one that is hydrophilic (lubricious) can help with discomfort. Lidocaine jelly 2% can be used as the lubricant if absolutely necessary, but routine long term use multiple times daily is not advisable as you can absorb significant amounts of the lidocaine systemically.

    Once you have mastered proper catheterization technique, it should not take more than 3-5 minutes to do the procedure each time.

    What country/location are you in? Do you have health insurance? If your intermittent catheterization is ordered by your physician, and catheters prescribed, your insurance should cover them. You don't need to use a kit. Clean self-catheterization is safe and easier to do. Many insurances will not cover the self-contained sterile kits unless you meet the Medicare criteria for getting them, which is essentially getting more than two febrile UTIs annually while on intermittent cath.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

    Comment


      #3
      Thanks KLD,

      Follow-up questions:

      1. It seems to me the high bladder pressures are the real danger here. Is the standard treatment for it one of the drugs you mentioned? Are they all similar enough in function that they are interchangeable? Are there other treatments besides Botox indicated for this pressure issue? I will discuss Botox with my doctor.

      2. Good to know about being able to cath sitting on a toilet. I worry that I am needlessly subjecting myself to the discomfort if you are telling me most people who do cath have little to no sensation. Is it uncommon enough for people in my situation that you would advise me differently if I were your patient? And I know that your advice here should be taken with the understanding that my doctor knows my case best.

      3. You mention lidocaine can be used as a lubricant if absolutely necessary. Does that mean the catheters come ready to insert and no manual preparation of them is usually needed?

      4. Would infrequent use affect sexual function in the long-term?

      5. I live in NJ and do have health insurance. Would it be best to carry them with me wherever I go? How do others do it?

      6. How long will it take to get used to it? Will I ever get used to the discomfort because I do have some sensation in the area?

      Thanks!

      Dave
      "Leela, you look beautiful. Incidentally, my favorite artist is Picasso."

      Comment


        #4
        Originally posted by pianodave View Post
        Thanks KLD,

        Follow-up questions:

        1. It seems to me the high bladder pressures are the real danger here. Is the standard treatment for it one of the drugs you mentioned? Are they all similar enough in function that they are interchangeable? Are there other treatments besides Botox indicated for this pressure issue? I will discuss Botox with my doctor.
        Yes, first line for a spastic or high pressure/non-compliant bladder is anticholenergic drugs. Next is Botox. Last resort is a surgical procedure such as a clam-shell cystoplasty (augmentation). The latter is a BIG surgery, and should remain a last resort.

        Originally posted by pianodave View Post
        2. Good to know about being able to cath sitting on a toilet. I worry that I am needlessly subjecting myself to the discomfort if you are telling me most people who do cath have little to no sensation. Is it uncommon enough for people in my situation that you would advise me differently if I were your patient? And I know that your advice here should be taken with the understanding that my doctor knows my case best.
        No problem in trying. If you find it too painful, you could also be considered for a Mitrofanoff (surgery) procedure to cath through an abdominal stoma rather than through your urethra.

        Originally posted by pianodave View Post
        3. You mention lidocaine can be used as a lubricant if absolutely necessary. Does that mean the catheters come ready to insert and no manual preparation of them is usually needed?
        Intermittent catheters come in a variety of set-ups. There are non-lubricated latex (Red Robinson) catheters. I don't recommend those. There are also sterile insertion trays that include these, but that is not needed for self catherization, which can be done with clean (not sterile) technique.

        Then there are PVC straight catheters (or Coude tipped if needed). You add your own lubricant (or lidocaine gel) to both of those. Next are PVC or silicone straight or Coude tipped catheters that you must add your own lubricant to.

        Next are hydrophyilic or lubricious catheters which have a lubricating coating added to the outside, and which you activate with a (provided) sterile water sachet before inserting.

        Lastly, there are self-contained sterile catheter kits which are prelubricated, prevent you from touching the catheter, and which also serve as a reservoir for the urine.

        Originally posted by pianodave View Post
        4. Would infrequent use affect sexual function in the long-term?
        No.

        Originally posted by pianodave View Post
        5. I live in NJ and do have health insurance. Would it be best to carry them with me wherever I go? How do others do it?
        Yes, most people take them with them in their wheelchair backpack or underseat bag. If you don't use a wheelchair, you can take in a walker or scooter bag, or use a messenger bag.

        Originally posted by pianodave View Post
        6. How long will it take to get used to it? Will I ever get used to the discomfort because I do have some sensation in the area?
        Totally individual and no way to predict.

        Originally posted by pianodave View Post
        Dave
        (KLD)
        Last edited by SCI-Nurse; 13 Oct 2021, 3:50 AM.
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

        Comment


          #5
          Thanks. Great information!
          "Leela, you look beautiful. Incidentally, my favorite artist is Picasso."

          Comment


            #6
            Mirgabetron and Gemtesa work differently than the anticholinergic which are first line but Gemtesa are used for neurogenic detrusor overactivity w/sphincter dysynergy. My experience is with Myrbetriq and we added it to the anticholinergic such as trospium. At the 50 mg dose it can increase blood pressure so it needs to be monitored. and Mirgabetron . Most likely similiar with Gemtesa. Botox to the bladder is the ultimate relaxant but you would have to cath. Use lots of lubricant-add more and you can try the urine to. Men with normal feeling cath themselves without any issue. Do you have high filling pressures, voiding pressures are both? If high voiding-especially really high, every time you void you are taking the chance of backing up in to your ureter then kidney. The if continues, the kidney(s) will sit in urine and eventually lose function then you will need dialysis 3x a week. And it is not just you can’t urinate-kidney failure has numerous other metabolic conditions that ALL kidney failure patients have. Think of it like high blood pressure-would you continue letting your blood pressure be inadequately treated knowing this pressure leads to worse high blood pressure, heart disease and possible stroke. And there is no way you are emptying your bladder on this med so you are retaining some and it doesn’t take much for you to get to your capacity and you void. 50-60 years ago, the leading cause of death was kidney failure due to having the high voiding pressures, retention and back up in to the kidney. That is why we no longer allow creed’ or stimulus voiding unless voiding pressure is normal or only slightly high. CWO
            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

            Comment


              #7
              Thanks CWO. I am about to start Trospium, actually. My urologist recommended against Botox. I was taught to self-catheterize the other day. While it's not super amazing, I feel like what makes it bearable is that I can control the pace. I have, according to my doctor, high filling pressure, but not voiding pressure. The high filling is borderline--it's above normal but not super high. I haven't had to catheterize myself since I learned, though it is a psychological hurdle I overcame such that I know how to do it if I need to. Right now, I am relying on these stopgap measures such as touching running water, dripping water into my hair and face, darkness, calming sounds. It seems to be working. Is this what you mean by stimulus voiding? And what do you mean there is no way I am emptying my bladder on this med? Which medication are you referring to?

              Finally, how should I hydrate best given my specific circumstances? Mornings are the worst. Usually by 5 PM I have some sort of rhythm but before then it can sometimes be pretty awful. Should I drink water before bed? I am not incontinent currently.

              Thanks,

              Dave
              "Leela, you look beautiful. Incidentally, my favorite artist is Picasso."

              Comment


                #8
                Did he say at what capacity the high pressure appeared? But no matter-Trospium is an anticholinergic. If you tolerate it, you can probably increase the dose-unless he started you on the highest dosage. What is your post void residual.? Empty-0 mls.or more.? Trospium will relax your bladder and you should hold more and yes, that is “stimulus or trigger” voiding. Emptying your bladder by cathing At least 4-6 times a day is recommended. Also you may notice that once you cath you have several hours to do what you want and not have to worry about emptying your bladder. Also, lubricant is your best friend. If catheter comes prelubricated, add more so it will skip right in. CWO
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                Comment

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