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First Instillations - Next Week

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  • First Instillations - Next Week

    This has been one crazy journey.


    I switched doctors and today was my first consult with my new uro. I like him. We discussed my current meds, future cystohdrostentian, and rescue instillations.


    I shared with him my fears concerning instillations and he was very reassuring.

    The RI's are scheduled for Fridays so that I can have the weekend to recoup. Excited about giving this a try!

  • #2
    As you know we are all different in what helps our pain, I had my 6th instill today, i get them once a week, two more then I stop for two weeks. They have helped me alot. I hope they help you too.
    IC diagnosis 3 weeks ago.
    Vesicare 10 mg once daily
    IBS and Gerd-Zegerid
    IC diet
    Elmiron 100 mg three daily
    Hydroxyzine 25 mg at night
    Amitriptyline 10mg at night
    Diovan 60/12.5 daily
    Topral 50 mg daily
    Zoloft 100 mg at night
    Klonopin .5 twice daily

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    • #3
      Thanks Greeneyes!!


      Your post was encouraging

      Comment


      • #4
        I had 5 out of 6 instills.. skipped the 6th one because I had a cysto/hydro..
        The instills were not nearly as bad as I expected.. I did have a hard time holding it in for 15 mins.. My bladder only holds a cup on expansion..the instills did make me flare for a bit but it let up after a bit...
        Hope all goes well for you..
        God brought me to it, He will bring me through it!!!

        Diagnosed 2003
        by cysto/hydro
        Elmiron took almost a year- made me sick, caused diarrhea
        Pyridium -Made me sick
        Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
        Tried DMSO instill- had 5 out of 6
        Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
        Cysto/hydro April 6th 2011-- on expansion only hold one cup
        IBS/ IC
        High blood pressure meds and Crestor
        Metformin (prediabetic)
        Sinequan (depression)

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        • #5
          My rescue instillations are : marcaine, sodium bicarbonate, heparin, sterile water.
          I do them at home twice a day (I have severe IC) and they have saved my career and quality of life. I hope you get equally good results and they bring you relief
          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


          • #6
            Hi, Passion ~
            I'm so glad you like your uro....that's such a step in the right direction. When I first started my instills I could hardly walk, urinate, pain all the time....in tears about 24/7...unable to sleep, "going" all the time and painful at that. Just recently I just noticed on my insurance paperwork that I had 32 instills last year and a few the beginning of this year. Then about 1-1/2 months without!!!! I felt very good, having what I'd call normal days. Then I got careless about my diet and bamm....things hit with vengeance....BUT....3 instills later and I'm again feeling so much better.

            May you find the right treatments that help you. Sometimes it just takes a little while to figure this monster of a disease out.

            Blessings that you'll soon feel great,
            Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

            11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
            8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
            8/2010 Surg gallbladder
            TREATMENTS (updated 4/15)
            IC Diet since 8/2009 (Able to vary 4/15)
            Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
            Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
            Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
            *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
            Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
            PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

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            • #7
              Update After Two Instillations

              Wow!!!! I am starting to feel normal. My cysto/hydro was performed on 18 April with the first rescue instillation scheduled for 29 April. Unfortunately, my town was hit by several tornadoes and the entire county lost power. Being without power and confined to the house put things in perspective. While I certainly would not chose this journey, I am grateful that things are as well as they are. My family was unharmed while countless around me suffered loss unspeakable. Please keep the state of Alabama in your prayers.


              When the lights kicked back on I called the doctor and had my first treatment. Actually, I had two treatments in one week (Monday and Friday).


              When I was in the doctor's office on Friday, I met LindaMay. Wow!!!


              Thanks for all the love, experience, strength, and hope that you share. This site is truly a Godsend.

              Still praying for the cure.


              Comment


              • #8
                Instills work for me 100%
                According to Dr. Dell's practice about 80% of his patients are helped with instills.
                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

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                • #9
                  what are exactly Instillations? What are the Ingredients? Are there different kinds with different ingredients or are what you all are referring to all the same? Sorry just newly diagnosed and confused!:

                  Comment


                  • #10
                    Rescue instillations are the ones most people are talking about on this board. They are a type of bladder wash. It can be done in the MD's office or at home.

                    It is a procedure where a mixture of meds are inserted into the bladder using catheter. There are 100's of recipes.

                    The most common ingredients are sterile water, lidocaine, heparin, Elmiron, and sodium bicarbonate. The ingredients differ in the amount of each as well as the number of meds used. Some instills include a steriod or antibiotics.


                    Dr. Dell finds about 80% of his patients are helped with instillations. That being said, it is not the cure but it helps most people.
                    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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