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  • #1

    Self cathing

    Are most of you told to self cath because you have retention and can't void on your own?

    I have seen quite a few uro who seem quite surprised that I have trouble peeing and have retention.

    I went to a new uro and he figures I should self cath for a while and maybe my ablity to pee will return, does this sound reasonable?

    I have had problems with this for years and my bladder is streached really big.

    I also run across uro's who say I don't have IC if I have retention. I was tested with a hydro distention under anastetic, and was told for sure I have IC.

    Just confused a bit, I know lots of others have problem voiding too.

    MG
    My are with you all. May you all find a way to peace and joy in your lives.
    Tags: None
  • #2
    Hi Mothergoose :-)

    I have been looking into several catheters for myself. I have samples coming from Lofric Canada this week to try them myself for instillations and in those desperate moments when I have retention.

    However, my friend saw this catheter advertised and I thought about your post... they are compact catheters made specifically for your problem. They are called speedicath.com. Look them up and see what you think! They come in boxes of 30. They are very small and compact!

    And I looked into my health insurance today and thankfully, catheters are covered 100 percent. I am so thankful for that because I am very low income and do not have money to cover it... I am hoping my job will cover my uracyst treatments for another year. Praying that this will happen!

    Praying for you,
    Wizbe!

    Current Meds:
    1 Elmiron 100mg 3x a day
    1 Cimetidine 300mg 2x a day
    4 Gabapentin 300mg 3x a day (3600mg)
    1 - 2 Atarax 25mg at bedtime
    1 baclofen 10mg 3x a day as needed
    200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
    2 belladonna and opium suppositories as needed for pain daily.
    Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

    I have tried but failed -
    lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
    [/I]

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    • #3
      I had both IC and retention issues. I did self cath when needed but it had zero effect on my ability to pee.

      Comment

      • #4
        There can be a huge benefit in being able to catheterize yourself. I learned how many years ago when I was unable to urinate following a surgery. It isn't difficult to do --- many ICers do their own instillations --- I did for a long time, but don't need the instills very often any more.

        Just knowing I'm able to do this if needed gives me more confidence in dealing with any potential problem urinating.

        Warm hugs,
        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.         [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

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        • #5
          Thanks for the responses.

          I am not too worried about self cathing, my Dr. is, I have very low immunity and very prone togetting infections, this is why he is opposed to self cathing and instills for me.

          I am willing to give it a try, I worry about being somewhere and going into total retention and not being able to day anything about it.

          So we will see, I will go with what ever is recomended.

          My neibour told me about speedicaths she saw them advrtised on TV.

          Thanks for the tip.

          I just really was wondering about slef cathing being able to make it so I can pee on my own again, when they know it is caused from the muscle not contracting?

          MG
          My are with you all. May you all find a way to peace and joy in your lives.

          Comment

          • #6
            I also have problems voiding, but I can't even tell my bladder is full. How do you tell when your bladder is full? The pain? How do you know when you have to void, and how do you know that you're not empty? I'm just trying to understand, we all seem so different in our symptoms.

            Comment

            • #7
              imakar, you may need to use a clock to know when your bladder should reasonably have enough urine to need to be emptied. I can always tell if my bladder is full --- I can definitely feel it.

              Donn
              Stay safe


              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
              Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

              Have you checked the ICN Shop?
              Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

              Patient Help: http://www.ic-network.com/patientlinks.html

              Sub-types https://www.ic-network.com/five-pote...markably-well/

              Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

              AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

              I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.               [3MG]

              Anyone who says something is foolproof hasn't met a determined fool

              Comment

              • #8
                A couple of suggestions, keep a voiding diary. Time you pee, how much you go, notes like had trouble starting, week stream, stopped and started, etc.

                What and how much fluid you drank, with time you drank it.

                This can tell you if you are putting out as much as going in.

                After keeping a record for a week, my Dr. told me to pee every hour, but to still keep the voiding diary with all the same info on it.

                I have lost sensation too in my bladder and don't always get the signals I need to go, I have been told to go at least once an hour, and to double void, pee and wait a few mins or get up and move around and pee again.

                I really don't know if this helps or not, but I do know if I wait too long to go to go then I might not be able to go at all.

                My Dr. tried me on vaginal estrogen, it is supposed to helpthe bladder, butthe estrogen really disagreed with me so I could not take it long enough to see if it would help.

                MG
                My are with you all. May you all find a way to peace and joy in your lives.

                Comment

                • #9
                  self cathing

                  I keep trying this and as soon as i get close, my post gets lost??? My Mom has to start cathing after a year and a half. She had a bladder lift then was diagnosed aving IC and her Uro recommended it. After this long and up every 10 minutes for a year and a half, she has decided to cath, yet due to the IC diet and other testing and restricted foods she has lost a tremendous amount of weight and will not use the nurce on hand to teach her to cath and wants to do it on her own. I have gotten her the info and also a YOU TUBE video on self cathing and she tried it last night with the samples sent and was not able to do it. I recommended she see the nurse on staff at her Uro's office and she will not do it because she is so embarrased about the way she looks with weight loss. I told her that as bad as it may seem that if she chose not to get help with it that she may have to actually put her fingers down there and feel where her urine is comming from even though it is sterial and that she could wash her hands afterwards. She can hardly go anymore and I know that she now has to cath but won't get the help she needs. She tried a mirror and still can't see where it needs to go. I told her to careful that some may end up with the cath in the vaginal opening, but she said she couldn't imagine that happening since she had had it done by her URO, I told her to keep it in mind anyway and when I spoke with her this morning she told me that even though she couldn't imagine it, that it had happened to her and that she could not find the opening. She needs to go and needs some relief and will not get help, what does she need to do. Plaese help, I think she's near the end with weight loss , IC, sleep deprivation, and urine retention. Carolyn

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