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  • self instills

    I had the hydro done last Wednesday. It went well. I have been cath since 2003 I use the Lowell Parsons cocktail , this new dr I am seeing advised me today to try and stop the cath all together I really don't believe I can the self cathing is what saves me at night? what do you ladies think?
    Blessings,
    Ruth

  • #2
    Did the new doctor give you a reason for stopping the instillations? And is it a reason that is based on your symptoms/body, or it just not something he has his patients do?

    I'd have to have a very compelling reason to stop mine, since they are what enable me to sleep at night, work, and do things I enjoy. If I didn't have the instillations, I'd need 24 hour pain medication instead of just at night & as needed during the day...

    It would depend strongly on the reason whether I'd stop them or not, for me.

    Best,
    Kadi

    -------------------------------------------------------------
    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.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

    Comment


    • #3
      self Cath

      Kadi... she stated that Elmiron and Elavil should be enough? I agree with what you are saying I tried that night not to cath I call it the treatment and my bladder was just throbbing? so I finally did it? I feel like I am addicted to the medication but like you said if I don't do the treatment at night which is what saves me what do I do?

      PS she also stated because she had done a hydro-distention about a week ago that I should be better and be able to hold more liquid?
      Blessings,
      Ruth

      Comment


      • #4
        Hi Ruth,
        Well, if I know anything about IC, it's that what "should" happen with us, isn't always how it works. From what I've read, about 50% of patients get improvement after a hydro-distention. That still leaves 50% who don't. Same kind of results with Elmiron. So, there's a large number of patients who might still need some other form of treatment (like instillations). I don't know what I'd do without my instillations, they enable me to sleep at night and work. I tried every oral medication first, and while they helped, it wasn't enough. I hope you can talk this through with your doctor, and if not, I'd seek a second opinion...
        Good luck!
        Kadi
        Kadi

        -------------------------------------------------------------
        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.
        ------------------------------------------------------


        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
        Source - Pinterest
        "


        Current treatments:
        -IC diet
        -Elavil 50mg at night
        -Continuous use birth control pills (4-5 periods/year)
        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
        -Pyridium if needed,
        -Pain medicine at bedtime daily, as needed during the day several times per week
        -Antibiotic when doing an instillation to prevent UTI
        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
        -Dye Free Benadryl 50 mg at bedtime
        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
        -Managing stress= VERY important!
        -Fur therapy: Hugging the cat!

        Comment


        • #5
          Self cath

          Kadi you are absolutely right, I have been continuing to to the instillation. I guess I am just going to have to keep on going to see Lowell Parsons, My Insurance is changing so that is why I thought well I have to find a dr somewhere around here, Thanks for your feed back I really appreciate it. Have a good weekend.
          Blessings,
          Ruth

          Comment


          • #6
            I'd definitely keep seeing Dr. Parsons if you can! I met him at that pelvic pain conference we went to in 2005 and really wished I lived in SoCal so I could go to him too! He seemed extraordinarily compassionate and knowledgeable......

            Hang in there & let me know how things go, ok?
            Kadi

            -------------------------------------------------------------
            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.
            ------------------------------------------------------


            New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
            Source - Pinterest
            "


            Current treatments:
            -IC diet
            -Elavil 50mg at night
            -Continuous use birth control pills (4-5 periods/year)
            -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
            -Pyridium if needed,
            -Pain medicine at bedtime daily, as needed during the day several times per week
            -Antibiotic when doing an instillation to prevent UTI
            -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
            -Dye Free Benadryl 50 mg at bedtime
            -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
            -Managing stress= VERY important!
            -Fur therapy: Hugging the cat!

            Comment


            • #7
              self instills

              Kadi I am going to try to continue seeing him the reason I was looking for a new dr was my husband will no longer have a job at his company that he has worked for 25yrs hes back is really messed up and he cant continue to do the job he has been doing so as soon as his company herd that they said "look Lisandro maybe its time to retire" and he said well maybe I can do something else within the company they said NO and he will be retiring 12/31/11 kind of sad he is only 44yrs old so I don't know what will happen with our Insurance we can buy Insurance through them but its 800.00 plus my meds are 365.00 that is just the instills and then what about the caths it just goes on and on.I appreciate your support. If you can maybe you can say a little for me and my family .
              Thanks Amiga
              Blessings,
              Ruth

              Comment


              • #8
                Hi Ruth,
                I'm sorry you're going through this. There is so much of this everywhere and so little loyalty to employees who have given faithful service, it's disheartening. I will definitely send up prayers for you & your family
                Sending a hug,
                Kadi
                Kadi

                -------------------------------------------------------------
                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.
                ------------------------------------------------------


                New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                Source - Pinterest
                "


                Current treatments:
                -IC diet
                -Elavil 50mg at night
                -Continuous use birth control pills (4-5 periods/year)
                -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                -Pyridium if needed,
                -Pain medicine at bedtime daily, as needed during the day several times per week
                -Antibiotic when doing an instillation to prevent UTI
                -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                -Dye Free Benadryl 50 mg at bedtime
                -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                -Managing stress= VERY important!
                -Fur therapy: Hugging the cat!

                Comment


                • #9
                  self instills

                  Kadi thanks for the and I have a question for you ? Do you still take Darvcet at night ? I thought it was off the market?
                  Blessings,
                  Ruth

                  Comment


                  • #10
                    Dr. Dell says there is not enough research with Elmiron to say it is the "cure" and he has conducted research for the manufacturers. He uses rescue instills and elmiron together.
                    I know Dr Dell would be happy to discuss treatments and his research findings with your Md. The institute phone number is on his website.
                    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                    My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                    Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                    Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                    I post to encourage and offer total support for rescue instillations.
                    Find me on facebook: L. Clark Thomas
                    Louann

                    Comment

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