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  • Whitmore Bladder Cocktail

    Hi, I think I’ve posted this somewhere else by mistake but I’ll try again!
    i have been having these once a week (lidocaine, heparin, hydrocortisone and gentamicin)and tomorrow will be number 4. I had immediate relief on the first one, followed by a two day flare. The same with the second although I did also flare again the day before my third and was flaring when I had my third. This instillation did dumb down the pain but did not take it away and then it got worse followed by two good days and now I’ve been terrible ever since, to the point I’ve been in absolute agony. Is this too soon to quit? I don’t know where to turn? My specialist is following another specialist at another hospital and doesn’t know the answer to anything! The consultant at the other hospital said the next step is bladder removal. Please help!!
    My current medications are:
    mirabegron, atarax, pregabalin, trimethoprim , nortripyline and Azo and naproxen when needed.

  • #2
    First of all, I'd like to say to the IC Network.

    I'm so sorry you're having such a horrible time. The instillation mixture you are receiving is not unusual --- and it helps many ICers. I can't give you medical advice, but it could be a good idea to go ahead with tomorrow's treatment? I do suggest that you ask for the smallest catheter available and to instill the lidocaine (or Marcaine) a few minutes before the other ingredients.

    Are you following an IC diet? If not, I suggest you begin today. I also suggest keeping a diary, listing time of day, everything that goes in your mouth, activities, pain levels, urinary frequency --- sometimes we can identify triggers by reviewing the notes.

    I hope you feel better quickly.


    Donna
    Stay safe

    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


    • #3
      Thank you so much. I’ve had IC for 13 years and have tried nearly everything now. I was also diagnosed by a London doctor as having an embedded infection and have been on antibiotics for two years but although white blood counts have fallen, the pain remains. I used to have a few flares a year, but this past two years have been relentless. I have gone against the London doctor’s advice with instillations but am so desperate to have my life back. I have been off work since November and am on the verge of losing my rented house and it really scared me when bladder removal was mentioned but I’d do it, to have a life again. I just thought the instills would be working now but they’ve got worse, not better. Is this normal? Many thanks for replying xxx

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      • #4
        How was the imbedded infection diagnosed? Have they cultured your urine to be sure you're on the most effective antibiotic?

        You should be able to get some public assistance since you haven't been able physically to work. I wish I help.

        Hugs,
        Donna
        Stay safe

        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


        • #5
          It was diagnosed by Professor Malone Lee who looks at fresh sample(no older than 2 hours) and counts up white blood cells and epithelial cells under a microscope.
          I have just found out after going for my fourth instill and after demanding they dip my sample that I have an acute UTI on top now too, and when they still went to do the instill, I questioned whether they should be doing it with an active UTI and they then said n?! So try now want to do Hyacyst and then IAluril and said if they don’t work, it’s bladder removal?!! I think this is ridiculous! I feel like I’ve been given up on! X

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          • #6
            Any time we have an instillation, there's an increased potential for infection. In my 45 years with IC, I have had a few infections. Once the infections cleared I went ahead with instillations and they did help. I haven't had any instillations for quite a while --- I've been doing really well. I sometimes have flares, but can usually track down causes --- experience isn't fun, but it helps me to know what works best for me.

            Stay safe

            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


            • #7
              Hi Donna
              I have a question about bladder instillations? Are they used mainly to help with pain or frequency? I have only had one done once with a terrible flare. Just looking at my options these days. Thanks
              Katrina

              Comment


              • #8
                It depends on what is in the instillation. Some have healing qualities, some ease discomfort. DMSO, which isn't used much any more, can be very painful and can have some long lasting side effects. Lidocaine or marcaine are surface analgesics, which can help ease pain, are frequently used. Some people with IC do their own instillations at home, but sometimes there are insurance issues. I know my insurance paid for them in the doctor's office, but not when I did them at home.

                What I found when I did them was that by easing the discomfort, it also helped with frequency. I suggest you find out what would be included in the solution, then post that --- and it will be easier to answer your question.


                Donna
                Stay safe

                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


                • #9
                  Hi i haven't been on here in a long time as things were going good until two recent UTIs back to back at the end of May. As for your UTI, the correct procedure is to give a urine sample, there are preliminary results usually within a day or instantly depending on where you go by looking at white blood cell count, and if there are any nitrates or lukytes(sp?) present and if WBC is high and any one of the other present they must send out the sample to see if the culture grows any bacteria then that bacteria will determine which antibiotic to give, they can give you a broad spectrum antibiotic until the culture comes back and might have to switch depending on the bacteria growing, e.g. ecoli, klebsellia, etc. Usually with UTI from catheterization it is ecoli and macrobid and/or bactrim are prescribed. But culture should always be sent out.

                  I do instills once a week of 40,000U of heparin, 20ml of 1% lidocaine and 3ml of sodium bicarbonate. The heparin is supposed to support your bladder lining, the lidocaine is for pain and I am assuming the sodium bicarbonate is to help with the pH of your bladder.
                  Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

                  Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

                  - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
                  - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
                  - Ativan when needed to relax.
                  - Elmiron only took for a couple of days; didn't like it
                  - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
                  - tramadol worked great for back aches
                  - generic claritin D worked best for me for calming bladder down and my panging
                  - still taking cysto renew 4x a day and believe this and diet helped the most.
                  - took dosage of cysto renew down to 2x a day and still ok

                  Comment

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