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Thread: Self catheterization?

  1. #1
    Senior Member ~Lin's Avatar
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    Self catheterization?

    First off, I do not have paralysis... But you guys seem to be the experts in this and I don't want to join a new forum just to ask about self cathing.

    I have never self cathed before. My urinary issues include difficulty urinating that requires me to use my stomach muscles, frequent nocturia (3 or more times every night), and bladder retention. I had never seen a urologist prior to last thursday, my pcp had handled things.

    Skip this paragraph if you don't care about my history. For the most part my urinary symptoms were always pushed aside for more urgent matters once serious issues were ruled out as the cause. What I currently know is I have pelvic floor dysfunction and spasms causing vaginismus and most likely the cause of the difficulty urinating. I produce more urine when laying flat, I've been told this is because of myy vascular issues resulting in more blood flow to the kidneys when flat. I also don't sleep well so I think that factors in to the nocturia, my theory is my body isn't concentrating urine during sleep the way it would without sleeping issues. I've been handling the nocturia by using a female urinal in bed because I physically cannot handle that many trips back and forth, and if I get out of bed its that much harder to get back to sleep. For the trouble urinating I use my abdominal muscles and do things like raise my feet up, or squat and pee in the shower. I can no longer squat due to knee issues. Sometimes it's quite painful when I can't pee and after trying for a while I have to give up and try again later. I'm also shy about peeing, so it's even harder in public restrooms.

    So I saw a urologist Thursday. I was kind of surprised he didn't want to run any tests, the only thing he did was used an ultrasound looking machine to check how much urine was retained after I tried to pee in a cup. He gave me vesicare to see if it helps the nocturia, but said it may make my difficulty peeing worse which has me very worried. I also read it shouldn't be used with delayed gastric emptying which I have. I took the first pill today. He also recommended self cathing and I'm to see someone to teach me on December 5th as that was the woman's soonest appt. My thoughts are if the vesicare doesn't work use an indwelling at night so I don't have to get up. It would be amazing to not get up so much...

    But I'm somewhat concerned that no tests were run and he went straight to medication and cathing. No attempt to find a cause that could be cured, and he didn't ask what tests I'd had before. I have had many tests from my primary drs but never had urodynamics which I've read about here. I've also avoided cathing in the past because I read about consequences like increased bladder cancer risk. The Dr told me that was untrue, that the only downsides were discomfort, inconvenience, and uti risk. I haven't had many utis in the past. Not being able to pee and the nocturia are far more inconvenient but the discomfort scares me. I'd be really interested to hear from anyone here that caths with full sensation. Due to the pelvic spasms vaginal penetration is excruciating (trying to get medicaid to approve treatment) so I also worry that cathing may also trigger more pain. Watching a youtube video from a nurse it said if you cath your bladder will be colonized, I thought that was just something that can happen not WILL happen? Are there more negatives to cathing? Is my Dr wrong about raising bladder cancer risk? Does anyone reuse catheters or does everyone use a new one each time? I kept reading about reusing the same catheter for a few months. Is there a difference between risks of intermittent and indwelling? Thanks so much for any help!!
    Last edited by ~Lin; 10-29-2012 at 03:45 AM. Reason: Add another question
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  2. #2
    Are you an SCI patient? Have you had urodynamics?
    CWO

  3. #3
    Hello Lin,

    I can understand your concern as I vasilated about the benefits of Clean Intermittent Catheterization (CIC). I am a SCI but I do have bladder sensation. Having a neurogenic bladder, I had a residual of about 350 ml. after voiding. I went to the restroom one day and couldn't void at all so I called my urologist. His RN lived only about 3 miles from me so she brought some supplies and showed me the procedure. Boy, that was a relief when I got it emptied. I have been self-cathing every since and wish I had started many years earlier. Being colonized is okay as long as you do not develop the other symptoms. My urologist does not treat colonization.


    If you have insurance, it will cover up to 200 catheters per month. You can get free samples and pick out the one you're most comfortable with. I have never used Vesicare or anything to reduce bladder pressure
    and I also can sleep the whole night now without have to wake up hurting and having to void in the middle of the night.

    Self-cathing ha
    s opened up new no-stress life for me as this has been a source of concern for me in my workplace where getting to a restroom may require waiting for a while.

    Good luck with this Lin and I don't think you'll have any regrets.


    Millard
    ''Life's tough... it's even tougher if you're stupid!'' -- John Wayne


  4. #4
    Senior Member ~Lin's Avatar
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    Quote Originally Posted by SCI-Nurse View Post
    Are you an SCI patient? Have you had urodynamics?
    CWO
    I do not think I have sci, I definitely do not in the classical sense. I say I don't know because I don't find out until I see my neuro on Nov 2nd if I have spinal cord involvement with my c3 instability. Sorry I didn't go into that, I was giving a ton of back story already. I've had the urinary and pelvic issues for years and years, c3 instability was diagnosed in 2001 by xrays and mri. In the last year I found out from a specialist in my genetic disorder that many symptoms were not from my disorder, mostly neuromuscular. He was also concerned about being able to feel the instability by pressing on the vertebrae which started the ball rolling. The neuro sent me to the urologist. They suspect either some spinal cord involvement with the instability or a Co existing neuromuscular disease. Since the nature of what prevents me from urinating (at least as far as I've been told) I do not know for sure if it's neuromuscular in origin or explained by the type of pelvic dysfunction from my genetic connective tissue disorder.

    I have not had urodynamics, that's one of my concerns that the dr did not run any tests. The spasms can be felt clinically but otherwise I think the rest of the explanations I've been given were a result of ruling things out, not ruling something in. So I still somewhat hope there's something that could be found and fixed as opposed to another medication and treatment that's going to be lifelong.

    Would it help for me to pull out my specific questions and number them?

    Thanks millard! Do you have genital sensation or just bladder sensation? And are you male or female? It seems cathing is worse for men since the urethra is so much longer.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  5. #5
    Hello Lin,

    In answer to your question; I am a male quad and I do have genital and bladder sensation. Catheterization is normally easier in males even though the urethra is much longer...but we can see what we are doing. Cathing for me is not pleasant but is painless as I can feel the catheter go through my prostate and enter the bladder. I wish I had starting this program many years ago instead of starting it in 2004.

    Good luck Lin and feel free to any questions.
    Millard
    ''Life's tough... it's even tougher if you're stupid!'' -- John Wayne


  6. #6
    Senior Member ~Lin's Avatar
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    I was looking up the urologist I saw, and he does do neuro urology.... It's listed as one of his special interests within urology. But then he's handed me off to a physicians assistant after just one appt. He had lousy bedside manner so I'm not sure yet if it's a good thing.

    He's the head of something here called UroPoint and the PA he passed me off to is one of the UroPoint practitioners. She's the one that's supposed to teach me cathing, but her first available wasn't until Dec. I guess at least this gives me time to decide if I want a second opinion. I haven't noticed anything from the vesicare yet good or bad, but I only started Sunday.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  7. #7
    Senior Member ~Lin's Avatar
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    I saw the PA today and a different urologist. I started with the PA but when she found out my full medical history she went and grabbed a urologist and said she wasn't comfortable handling my case alone. So the appt went MUCH better than last time, we discussed a lot of things and she showed me how to cath and sent me home with starter supplies and the phone number of a company I can order them from.

    The vesicare didn't really do much of anything for me so we stopped it, I said I would rather not take more medications if possible. After actually listening to me (which the first uro didnt do) she agreed with me that I don't have an overactive bladder and it was kind of pointless to try the vesicare. My frequency comes from larger volume. So I'm supposed to start keeping a diary of how much and when I drink and pee, and I'm also going to be referred to nephrology. I'll see her one more time before nephrology because she said we needed to get the proper info down like the diary before nephrology will take me.

    I do have a new question, after I cathed I felt some burning and like I still had to pee for a little while even though my bladder was empty. Also, the next time I had to pee I managed to without the catheter but I felt a burning while peeing. Is that normal? Is it going to go away? As far as cathing I'm supposed to continue trying to pee myself before using the cath, but not to strain as much as before since they're concerned about reflux. And shes sending another request to try and get medicaid to cover the pelvic floor physical therapy they've been denying for months.

    Edit: another question. I was given short catheters, and I was thinking about how it might be difficult to use them in public restrooms especially at first. Is cathing easier from the chair? I believe thats what I've read here, and I know some people use tubing to extend the catheter to reach the toilet from the chair. Anyone know what kind of tubing I would need? My catheters are 14french and they have a green funnel type looking end.
    Last edited by ~Lin; 12-05-2012 at 07:58 PM.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  8. #8
    Quote Originally Posted by ~Lin View Post
    Edit: another question. I was given short catheters, and I was thinking about how it might be difficult to use them in public restrooms especially at first. Is cathing easier from the chair? I believe thats what I've read here, and I know some people use tubing to extend the catheter to reach the toilet from the chair. Anyone know what kind of tubing I would need? My catheters are 14french and they have a green funnel type looking end.
    http://www.allegromedical.com/cathet...s-p192467.html

  9. #9
    Senior Member ~Lin's Avatar
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    Thanks! And thats cheap. Says it fits directly in to the color coded funnel end, are those (funnel) always the same size regardless of the size of catheter then? I didn't see any options for size.

    Also, does medicaid cover the supplies besides the catheter or only the catheter? I asked to make sure medicaid would cover my catheters and they said yes and that the company that they gave me the number for is really good. But I forgot to ask about the other stuff like the lube and wipes, is that usually covered by insurance or purchased out of pocket?
    Last edited by ~Lin; 12-05-2012 at 09:01 PM.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  10. #10
    It will fit any catheter. I don't have medicaid so don't know the answer to the other question.

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