No announcement yet.

thought i was on to something

  • Filter
  • Time
  • Show
Clear All
new posts

  • thought i was on to something

    had my 2nd bladder instillation yesterday and got a lot of relief for about 24 hours. Since this was 2nd one i was hoping for a few days relief because I had 24 hours relief the 1st time. Doc said i need to do them closer together to feel a cumulative effect since i went 9 days in between instill 1 and 2. I ordered the ICaloe and am a little saddened that this instill didnt provide great relief. Hopefully hes right about doin it 2X a week. Next one is wednesday. I am praying it works

  • #2
    Some ICers do their own instillations every day --- worth it if it works! I think Kadi is one who does them frequently.

    Stay safe

    Elmiron Eye Disease Information Center -
    Elmiron Eye Disease Fact Sheet (Downloadable) -

    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:


    Diet list:

    AUA Guidelines:

    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.

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


    • #3

      But I am indeed a Man, and the instill is not pleasant so I dont think I can do everyday but I can surely do to twice a week for 3 more weeks. If this doesnt work, I either have another hydrodistension or interstim. One thing the instills have taken away pain for most part. now dealing with frequency and the pressure to "going to bathroom"


      • #4
        Yes, I do them twice a day most days and they've given me back a good quality of life. My IC is not mild and I have a job where I have only specific times to use the restroom, so these instillations are necessary to keep working.

        For a guy, I guess you'd have to work out the benefit/cost ratio depending on how uncomfortable the catheterization process is? I hope twice a week will bring you relief! One thing I did learn in the process is that cathing myself is much much easier than having someone else do it. Maybe that might be the case for you also?

        What your doctor said was true for me as well, that the instillations reach maximum benefit after you've had a series of them close together. It's a good sign that you got a full 24 hours relief just after the first two. Hopefully after you have several more close together, you will get more sustained relief

        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!


        • #5
          Just to add one more opinion, I , like Kadi, do instills daily. Some days twice a day. If I go for a time without them I certainly notice a difference in my pain. The more I do the instills the easier it gets. I find that if I stop them for a while I am much more sensitive to the catheter until I get my bladder soothed again by doing the instills more consistently. I would think that would be comparable in a male, once my bladder is calmed, and my urethra with it, the cath doesn't bother me. I would suggest to use a very small catheter, like we do. (usually an 8 fr)
          I would think it would be worth a try. If it works that would be great for you!
          Link to the patient information, everything from What is IC? to Disability

          American Urological Association Clinical Guideline
          Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


          • #6
            Thats good news that they are providing you relief (though not for long). It at least shows you are on the right path and is helping your pain. Has your doctor put you on any medicines that would help the pressure and feeling of needing to go all the time? There are a couple groups that I know of such as the low dose tri-cyclic antidepressants (amitriptyline, nortriptyline) and the overactive bladder meds such as vesicare, oxybutynin etc. Maybe something like that would also help with those feelings.

            Gelnique for frequency/urgency - works great
            Macrobid after sex
            Prilosec, continuous birth control pills
            synthroid .088mg, mucinex-d, restasis

            Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

            Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

            IC Diet Link:
            AUA 2011 Guidelines to diagnosing and treating IC overview-
            AUA 2011 Guidelines to diagnosing and treating IC PDF:
            Great treatment flowchart on page 19 of the pdf