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  • #16
    Re: Pain Pump Failed

    Hi Miss M,

    My case is complicated by a problem with my immune system. My body attacks itself like "friendly fire" over the years, so I've already had to have my thyroid, gallbladder, ovaries and uterus removed. The past 2 years, I've been on long-term steroids to keep my immune system from being so over-active. If someone like me has to have surgery right now, they'd have to put me on even higher doses of steroids to counter the fact I've been on them so long. (Example: I have to carry a medical card in my wallet. If I were to have a car wreck etc., the hospital has to know to increase the steroids or it can have bad consequences.) They are very slowly weaning my steroid dose down but it's going to take several more months. Even after I'm steroid-free for a year I have to carry the medical card.

    It's too risky for me to have a serious surgery such as bladder removal right now unless it's cancer. Even then I wouldn't be so sure.

    I've had serious talks with several IC doctors about it because trust me there are times I want this thing out of me. Long-term steroid use alone and/or higher doses have nasty side effects. Such as Cataracts, bone loss, Diabetes, Osteoporosis, easy bleeding, easy bruising and weight gain. The list is endless! I've been lucky so far to only have lots of bruising and easy bleeding. (Easy bleeding is another reason surgery's a no-go right now)

    The last thing I would need right now is stoma sight infection, kidney failure, or any of the other risks that can come with bladder removal.

    Alot of people who have bladder removal have bladder shrinkage. I have none, which is good, despite my chronic pain and the fact that I have severe bladder/vaginal/urethra spasms.

    The other concern, regardless of my immune system (which is the main concern right now), is that the bladder is one organ where the nerves have "memory." The way it was explained to me was it's just like when a soldier has an arm cut off. Sometimes they are left with life-long "phantom pain" and this is a common problem with bladder removal, where pain was the main IC symptom (little or no bladder shrinkage).

    Some patients are left with constant urge to pee around the Urethra area (even though they can't anymore), infections at the stoma sight and kidneys, and/or worse quality of life than they had before removal.

    Regardless of the risk of pain/quality of life being worse after surgery, I'd still be open to the surgery because nothing else has worked. But, the steroid therapy is a bit of a monkey wrench.

    This is why I'm back to square one with trying to heal my bladder after 15 years of IC. And why I'm hopeful I can go see Dr. Evans!

    Here's the big "but"...Like alot of other IC'ers I'm in a bit of a pickle with insurance and all the money it costs to travel and get treatment. Plus, traveling is very hard for me right now. I already have to travel to see my doctors in Nashville 5 hours away every 3 months. The road trip is rough on my bladder and the hotels get expensive.

    For now I'll stay on meds and remain very, very careful with IC diet as I have since diagnosis. I don't even use spices at all such as salt, pepper, or safer ones like garlic. Just Cinnamon once in awhile.

    Thanks for the info on the ankle stem. I do have frequency with pain. Heck if it solved even one symptom I'd be grateful.

    I can't do pain pumps for the same reasons you couldn't tolerate it. Antidepressants for pain control were a total disaster for me. I've tried so many things.

    If I make it to see him I'll let you all know what happens.

    All this said I have read of cases on here and other forums where bladder removal DID resolve IC pain not just frequency/urgency. I've seen it go both ways.

    It's all so confusing. My doctors know, quite frankly, that I don't care how it happens...I am desperate to have my BRAIN quit talking to my BLADDER!!

    Keep us posted on your progress, and hang in there!

    P.S. sorry this was so long. I wanted to explain the reasons I can't have bladder removal fully in case it helps anyone.
    Last edited by jeanniebug; 04-02-2017, 04:46 PM.
    Jeannie
    "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

    IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

    Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

    Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

    Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
    As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

    Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

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