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  • #31
    Pain Meds and Hydro/Cysto

    Yes, I am part of a pain clinic. And, as for the tolerance...well I have been taking narcotics for almost five years straight without knowing what was wrong with me. We just found out through a hydro/cysto this past January that I have a pretty severe case of IC. The doctors tried all the conventional treatments for IC like Elmiron and Anti-histamines.

    What is interesting though is that I felt HORRIBLE after my first hydro/cysto, but my Urologist thought I might get some therapeutic value from it if we did it again so we did it on Tuesday. I stayed in the hospital one more night because when I woke up, I was in excruciating pain. My primary care doctor doesn't usually prescribe pain medications, but she did today when I was discharged. I told her we were going to my husband's family's home in North Louisiana, about 30 miles from Eldorado, Arkansas. I don't feel as BAD as I did when they did my first one, but I am really sore still and climbing the stairs is excruciating right now. So, my primary care doctor wrote 60 Meperghan Fortis, which is essentially the same thing I was getting in the hospital, but in pill form.

    Anyway, I will be discussing the possibility of doing those hydros every six months, perhaps. And, no, I am fine when it comes to being sedated for surgery. They use what is called MAC anesthesia, usually using drugs like Propafal (spelling?) and Fentanyl. Before my surgery in pre-op, my heartrate kept racing so the anesthesiologist gave me Phenergan and Versed which made me not give a care about what was about to happen. I spoke with the anesthesiologist about my resistance to pain medications and he said the medications they use in the O.R. are about ten times stronger than my usual pain meds of Demerol and Phenergan. So, we'll see what comes of that. Also, this time with the hydro/cysto, my bladder looked worse than it did with the original one.

    While on the subject of medications to treat IC, I have been reading about one particular drug called CellCept. Does anyone know if it is being used to treat IC yet or is it still awaiting FDA approval?

    Thank you so much for your concern, though.
    Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.


    • #32
      I have heard the name, but nothing much over that. Did you get picyures of your bladder? I think there interesting, you can email them to Jill and they will put them on the site for you.
      'The will of God will never take you where the Grace of God will not protect you.'


      • #33
        Re: Pictures of the bladder

        Hi Tiger_gal,

        I don't know if they took some pictures, but I will ask and see. I think it would be interesting to see them. As for CellCept, if you go to:

        Then, you can read more about CellCept. It's something my husband and I are considering if it gets approved.

        Have a great 4th!
        Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.


        • #34
          NIDDK Launches Phase III CellCept Study
          The purpose of this study is to investigate the safety and effectiveness of a medication called CellCept in treating refractory (has not responded to other treatments) interstitial cystitis. CellCept is an immuno-suppressant. Immuno-suppressants work in the body by reducing the immune system’s ability to produce certain reactions that can cause inflammation. In some people, the inflammation produced by their immune system can damage healthy tissues and cause symptoms of pain and discomfort. CellCept is approved by the U.S. Food and Drug Administration (FDA) for use in patients who have had an organ transplant and helps to prevent the rejection of the transplanted organ. The study will be conducted at eleven research centers throughout the USA & Canada
          This actually sounds interesting, but if IC is an auto immune disease, wouldn't breaking down out immune systems create more problems for us if using it long term?
          'The will of God will never take you where the Grace of God will not protect you.'


          • #35
            cell cept is a lot (or seems) like cya...both are immunosuppresants.


            i TRULY hope you are feeling better. if it were me, i would've canceled the trip to the inlaws completely! are you able to pee on your own now? you are in my thoughts daily. at this point...bladder removal seems like it MIGHT be the best thing for you since your bladder is worse and you've built up such a tolerance to pain meds! just something to consider, i know not consider LIGHTLY.

            good luck with everything. we love you.
            (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

            Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

            I'd like to be on House, MD as a medical mystery.

            Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

            Connor & Mommy by the tree:

            Connor with happy!

            I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

            Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

            I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!


            • #36
              "Never Give Up."

              To view pictures of my creative interests and Maine Coon kittens click here:[email protected]/

              My Photobucket Link:


              • #37
                Hello dear,
                I'm sorry you've been going through all this. I hope you'll find something that will work, and I'll keep praying for you.

                Have you tried diet supplements (glucosamine, chondroitin, MSM, Quercetin..) or herbs, or chinese herbs.. etc.. some patients here in the forums mentioned it helped them, even if it helps partially it would be still better than nothing..

                also there is the bladder installations (though it made me worse.. but again some are getting benefit), and also some mentioned the botox injection (though I guess would be also difficult to find a doctor who would do it).. may be these are later options or may be you've already tried all that.. for now I hope the bladder distension works for you..