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Help- they stopped making my med, need some wisdom

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  • Help- they stopped making my med, need some wisdom

    Hi All-
    I have bad IC and am on a boatload of meds inc. narocotics I have been on them about 6 yr and on long acting about 3. I have been on levorphanol and it has worked great. Sadly a national shortage required me to get it compounde for the last 7 or so months. My crappy mail order pharmacy didnt' bother to tell me that it was no longer available (happy to vent on that if anyone cares) but basically, I have a week of meds left, an appt with my pain MD and I am scared. I was pregnant and on meds last summer and before we found a compounding pharmacy we tried Opana (hated it) and Ive tried MS Contin and I think the basic morphine meds don't like me (lots of side effects).

    So....anyone on oxycontin, methadone (which frankly scares me), dilaudid ER or fentanyl? Or anyone with any magic suggestion.

    My Pain MD is great, very reasonable but I LOVED my levorphanol, didnt' make tired or feel all high and groggy. I also take norco 10/325 1-3 a day and valium for spasms. I have very bad PFD and 2 pregnancies did not help (but my kids are cute).

    Anyway....please anyone give me your experience on these meds. I KNOW everyone is different and God knows I don't want to seem like "that patient" that is asking for brand x, y, z....but we ALL know an opiod pain med change is rough....UGH. Just when life was evening out!

    Much thanks and love and less times to the potty for all of us.
    I am blessed to have an Indiana Pouch now
    IC since childhood, finally diagnosed at 31 yo
    PFD/Pelvic Pain,SI joint and LBP
    Low Back Pain s/p spinal fusion at 19 with more nastiness in back
    Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
    Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
    Radical Cystectomy with Indiana Pouch 2/3/12--->multiple complications and revision of ureters in pouch due to a giant ball of scar tissue in 8/12, occasional pylo, L kidney small and scarred, low flow
    Hysterectomy 2/3/12 w one ovary removed
    Dry Eyes
    L radical nephrectomy 1//3/14 after a long "what if " the conversation, kidney working 4 %, path said full of absesses
    Still have issues, still take meds.

    I have worked some, been doing pilates, just got a post masters in nursing, learning to pace myself.
    Learning things I can't do, learning things that I need to take a LONG time to master and regain myself, but mostly just so happy to be bladder free.: