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Considering Instillations to increase my diet options

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  • Considering Instillations to increase my diet options

    I can keep my bladder pain under control for the most part by eating a very limited diet of no meats and about 15 vegetables with no seasonings other than butter. Not the idea diet I know but it does keep my pain mostly down to a tolerable level. However I've been considering getting the instillations with the hopes that it might increase my diet options as well as help heal my bladder more. My urogynecologist has also said that the instillations might help my vulvodynia pain. He said that most of his patients are helped with it when the bladder is better then the vulvar pain is better. My fear is that this will actually cause me great pain. I'm extremely sensitive and have flared every time they cath me. Any advice is welcome!

  • #2
    Re: Considering Instillations to increase my diet options

    Lofric caths are the only way I can tolerate it!!!! The will send you 5 samples if you to to their website! That will give you enough tries to see if it is an option.
    Current: -pelvic floor therapy, -weekly uracyst instills

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    • #3
      Re: Considering Instillations to increase my diet options

      I've been doing instills since August and they seem to be helping some. I've noticed that some things that would have bothered me before don't as much now.

      I use a premixed solution, and I use spedi-caths. They are pre lubricated and I get them from 180 Medical. Super nice people.
      ----------------------------------------------------
      My blog on IC, adoption, and academia: the garlic whisperer

      Diagnosed Jan 2013. Currently taking:

      200mg Elmiron morning and night
      25mg Elavil at night (no drowsiness or weight gain)
      culturelle in the morning
      SLIT drops for allergies (environmental) 3 drops/night under the tongue
      zyrtec 24 hour nightly (recommended by uro)
      Instillations 3x/week: Parson's Solution
      uribel and prelief as needed

      Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
      No longer need them, so I only take them during flares.

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      • #4
        Re: Considering Instillations to increase my diet options

        Thanks! I had my first instillation Thursday and I've been in bed ever since in pain. I'm hoping that it's just a first time thing and that my next instillation Monday will not be as bad. The doctor said to at least try it 3 times.

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        • #5
          Re: Considering Instillations to increase my diet options

          Originally posted by Amandawag View Post
          I can keep my bladder pain under control for the most part by eating a very limited diet of no meats and about 15 vegetables with no seasonings other than butter. Not the idea diet I know but it does keep my pain mostly down to a tolerable level. However I've been considering getting the instillations with the hopes that it might increase my diet options as well as help heal my bladder more. My urogynecologist has also said that the instillations might help my vulvodynia pain. He said that most of his patients are helped with it when the bladder is better then the vulvar pain is better. My fear is that this will actually cause me great pain. I'm extremely sensitive and have flared every time they cath me. Any advice is welcome!
          Most of us don't have as limited diet as you describe. Are you working with the food list on this site? You'll find the list at the link in my signature below. Having instillations won't necessarily increase your tolerance to trigger foods, but if might make you feel better.

          Warm healing thoughts,
          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]

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          • #6
            Re: Considering Instillations to increase my diet options

            Yes. I started with this diet almost 2 years ago. I used the foods listed on this site and kept a food diary. When my symptoms got worse I could see a pattern from food. So I would eliminate that food and a month down the road I would try to reintroduce it. If my pain came back I knew that food was a trigger. It was a long road to get to the point of knowing my triggers but I got there. I can keep myself mostly out of pain with this diet but I certainly get bored of the diet. I've read so many stories of remission after instillations. So I'm praying it works for me too. Thanks for all of your help!

            Originally posted by ICNDonna View Post
            Most of us don't have as limited diet as you describe. Are you working with the food list on this site? You'll find the list at the link in my signature below. Having instillations won't necessarily increase your tolerance to trigger foods, but if might make you feel better.

            Warm healing thoughts,
            Donna

            Comment


            • #7
              Re: Considering Instillations to increase my diet options

              Wondering if you have tried any oral meds for your vulvodynia pain? I'm thinking medication for neuropathic pain such as lyrica or topomax. It has been a lifesaver for me.I know everybody is different--I'm vegetarian, but I can eat anything except the most acidic or spiciest food (such as hot Indian or Tex-Mex food) without having a flare of pain. Of course, I have chronic pain so I guess I'm in a flare all the time. Just saying food doesn't make it any worse.

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              • #8
                Re: Considering Instillations to increase my diet options

                Originally posted by MissyBell View Post
                Wondering if you have tried any oral meds for your vulvodynia pain? I'm thinking medication for neuropathic pain such as lyrica or topomax. It has been a lifesaver for me.I know everybody is different--I'm vegetarian, but I can eat anything except the most acidic or spiciest food (such as hot Indian or Tex-Mex food) without having a flare of pain. Of course, I have chronic pain so I guess I'm in a flare all the time. Just saying food doesn't make it any worse.
                I have not tried lyrica or other pain meds yet but my doctor has talked about it. I'm afraid they will make me seriously groggy. I'm so susceptible to meds.

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