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  • restarted instills.

    restarted instills today. it has been nearly a year since my last one. Before they used 150cc of saline with heparin. Now they are using jus 50cc of saline and heparin along with sodium barba??? and lidocane.

    Not to sure how I feel about this. Supposedly it has really helped others. I hope it helps me.

    April
    symptoms: Pain, frequency, pressure
    triggers: stress, intercourse, soda, coffee, tomato sauces, artificial sweetners, msg , soy & scar tissue
    treatments: D-Mannoose supplement
    Diet free of wheat, soy, and dairy.
    Surgeries:
    4 laproscopies: 3 cystscopies, 2 w/ hydrodistention: breast reduction and revision:2 sinus surgeries
    Diagnosed with IC,IBS, PFD,TMJ (2012), endometriosis, dry eyes(2012), chronic sinus problems, allergies, multiple chemical sensitivity, adhesions, anxiety, depression,
    spinal problems(2012) Fibromyalgia (2012) adrenal fatigue (2012)

  • #2
    Hi, sassiegyrl ~ I, too, just began instills again, but I didn't make it near as long as you. I did go almost 2 months though! My instills are Heparin/Lidocaine/Bicarb/Kenalog/Sterile water, but they are only a total of 31cc's. Wow....there would be no way I could have held as much as they used in yours. My bladder was painfully bursting with less than 100cc's of anything. I have had extremely good results with this formula...I can't remember exactly how much of each but I could find out.

    I'm so sorry you had to start up again. Are you aware of what triggered this change? A year is a wonderfully long time. Sounds like you'll be back on track again soon.

    Take care and best wishes that this new instill formula works for you,
    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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    • #3
      Bladder Instills

      The most confusing information for me is about the instills. I had 14 and took time out because I felt no relief. I see that there is more than one formula and 2 of the prominant doctors in the IC field use Heparin..my URO does not and says he only uses one formula ( lidocaine, bicarb, sterile h2o and , 2 elmiron) The Elmiron allows you to "hold" the instill in longer but so far, no diff in the results. I am about to see 2 new doctors this week. This is a never ending search for the doctor who really knows how to treat this dibilitating disease. I have been seen by male & female URO's and my preference so far..the females have more empathy for the pain we are feeling. But no miracle cures. I was taking Enablex but felt no relief from spasms from a 7.5. The office assistant nurse gave me 15.0 and WOW!! I had a terrible reaction from doubling the mg. So much for that pill.
      Additionally, I take prosed, prelief, darvocet (whats left of it) and of course IC Diet always. I miss chocolate so much and want this awful Valentines reminder day to be over already! Anyone else feel the same?

      Comment


      • #4
        Mizmak~sorry to hear that you are going to see other doctors for releif. I went and saw a urologist when I was first started having problems with my bladder. She said that there was nothing wrong. So, since I was already seeing my ob/gyn for another issue, I mentioned to him about it. He suggested the hydro/cyto scope that he could do.. So he did and diagnosed me with IC. He is staying up todate with the treatments lately and I hear that he also has another dr in the practice that treats IC too. My friend sees the other dr. I was given darvacet for pain after instils. I am going to have to ask for more the next time I go in.

        The new cocktail of meds I am not sure about for me yet. I do like the smaller amout that has to be instilled. Makes it easier to old it in.

        Another thing that has really helped me is taking a supplement called D mannoose. I got mine at the health food store.

        April
        symptoms: Pain, frequency, pressure
        triggers: stress, intercourse, soda, coffee, tomato sauces, artificial sweetners, msg , soy & scar tissue
        treatments: D-Mannoose supplement
        Diet free of wheat, soy, and dairy.
        Surgeries:
        4 laproscopies: 3 cystscopies, 2 w/ hydrodistention: breast reduction and revision:2 sinus surgeries
        Diagnosed with IC,IBS, PFD,TMJ (2012), endometriosis, dry eyes(2012), chronic sinus problems, allergies, multiple chemical sensitivity, adhesions, anxiety, depression,
        spinal problems(2012) Fibromyalgia (2012) adrenal fatigue (2012)

        Comment


        • #5
          Mizmak,
          Elmiron in instills is essentially the same as the heparin, they are both the same type of drug. (from my understanding) I used to have heparin in my instills but we changed insurance and the price went from $4 for a months worth to $600, no joke! So I changed to elmiron and marcaine, that helps me a lot. Is your Dr allowing you to do them at home? If not, you might want to ask about that as an option. It is so nice to have the ability to help yourself at home. For me, they last anywhere from 2 to 6 hours. I do find that the longer I do them the more effective they become. I see that you were using lidocaine and sodium bi carb, for me that combination burned really bad, when I changed to marcaine I noticed a huge improvement. Also, the elmiron in an instill is thought to help the elmiron to start helping us sooner that if we digested it, because when we digest it only a small portion makes it to our bladders.
          I hope you find some help soon,
          Sandra
          Link to the patient information, everything from What is IC? to Disability
          http://www.ic-network.com/patientlinks.html

          American Urological Association Clinical Guideline
          Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
          http://www.auanet.org/content/guidel...ent_ic-bps.pdf

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