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  • Does anyone know how Mary or Lynn are doing

    I haven't seen Maryla or IBS/hopeful (i think is Lynn's) on the board. Does anyone know how they are doing? I have tried to write Mary and haven't had a response - does anyone know if they are okay after their repair surgeries?
    Teresa

    We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

  • #2
    end stage doctor condescending

    I was told today by a urologist surgeon that I was in end stage IC and nothing left to do for me. I needed to get it together in my head and fix things myself! Maybe new treatment will come about! Be sure I stayed away from chocolate and caffiene. Work on my part more.
    This really upset me because I follow the ic diet to the t! I do everything they ask of me. To top it off she pushed all over my bladder and did a pelvic exam. Pain was excruciating and topped off by a 2 hour and 45 drive one way trip to be told I needed medication for psychotics for all I have been through. I cried all the way home.

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    • #3
      Originally posted by Snowden1 View Post
      I haven't seen Maryla or IBS/hopeful (i think is Lynn's) on the board. Does anyone know how they are doing? I have tried to write Mary and haven't had a response - does anyone know if they are okay after their repair surgeries?


      Oh, Hi Honey!!!

      I am so sorry that I have not gotten back with you. I have been pretty sick. I had MRSA in my pouch AGAIN!! This time I had a picc line in for 2 months and just felt really rotten.

      My uro finally sent me back to the infectious control drs that treated me many times in the hospital, and we are working on trying to repair all the damage all the ABS caused over the last yr and a half.

      But the really great news is that I still am not feeling any old bladder pain and I am soooooo grateful that I have not and I am so blessed to have gotten rid of that sick old bladder.

      I pray you are doing better?? PLEASE know that I think of you often and send you my love

      I also started on LDN (low dose naltrexone)3 weeks ago and feel better. I would encourage you to try it. I am off the couch most days now!! That's a great defeat right now!! My rheumy is still in the process of dx'g lupus but the LDN is great for that too. So I am hopeing and praying that I continue to get better!! Hope to talk to you soon!!

      Many hugs and blessings,
      MARY


      Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

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      • #4
        Originally posted by rusbet View Post
        I was told today by a urologist surgeon that I was in end stage IC and nothing left to do for me. I needed to get it together in my head and fix things myself! Maybe new treatment will come about! Be sure I stayed away from chocolate and caffiene. Work on my part more.
        This really upset me because I follow the ic diet to the t! I do everything they ask of me. To top it off she pushed all over my bladder and did a pelvic exam. Pain was excruciating and topped off by a 2 hour and 45 drive one way trip to be told I needed medication for psychotics for all I have been through. I cried all the way home.
        rusbet,

        I'm sorry you had such an ordeal with that idiot of a uro. GO SOMEWHERE ELSE!!

        We don't need all that negativity on top of everything else we deal with on a daily basis!!!

        Many hugs and blessings,
        MARY


        Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

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        • #5
          Thank you so much for that sweet response. I really needed that!
          Betty

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          • #6
            Oh, Maryla, how terrible for you. Geez, you just get one thing after another....but the good thing is no more bladder pain. Thanks for taking the time to write.

            Hi, Rusbet ~ I agree with Maryla, you need to find someone who CAN and WILL help you.... I'm sorry you're having such pain. Please stay in touch.

            Prayers for both of 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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