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sharing my story...finally

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  • sharing my story...finally

    Last Thanksgiving I left the hospital after a successfull abdominal hysterectomy ovaries intact due to fybroids. my really wounderfull hubby. brought a turkey dinner and we rejoiced Even though I was missing Thanks giving with my family. and i forgot about my complaint abouth the catherter and the pain that felt like a uti. even though i only had maybe 5 uti's my whole life.. i'm 43.. anyway that was the beginning.

    I went back for my 2 week check up complaining of pain and my ob checked for a uti, thought it was bladder spasms, the same at my 4 week check up, then sent me to a urologist who for some odd reason kept sending me back to my ob and stubbornly refused to do the hydrodistension(SP?)
    even though my ob kept sending me back to him.. this urologist went so far as to have me get a cat scan????
    Well thanx to multi web search starting with the pelvic pain site ( at the time my main symptom was pain though later i was to get the works -pain, urgency and frequency,)i found a group of doctors that are fabulous ( I'm in Western PA so if any one is near here and in need RandySarner and was tested and found that i have quite an ugly looking bladder indeed!!! yes.. not only do i have ic but i am one of the lucy icers with a heavy dose of hunners ulcers. Explains the severe pain. But Im ahead of myself At first I found a doctor who put me on Emelron and the amytriptylene but never bothered to check my bladder telling me i had ic

    My reaction to Ic.. Was denial for 4 months so I was taking the meds but not watching my diet. not taking the meds with water or on an empty stomach... than I started getting horred flare ups... crying, screaming.. ice packs in the crotch flare ups... found the best urologist in the world.. showed me the ugliest picture my bladder::: got mayor depressed went to pain management: pain therapy: pain psyc:more drugs:
    FLARE !!!!FLARE!!!!FLARE!!!!FLARE!!!!

    The worse of it the last couple of weeks. I had a flare that i really can not even write about except to say that I was in a really bad place physically and emotionally due to the pain. Of cause I was totally bedridden. I called my mother to say that there was just no possible way i could make thanksgiving again this year. I was despondent. In truth I have been probably all year but this last flare was the worst of it.

    Anyway on about the 11th night when i was feeling a bit better and able to lie there and sleep but not sleep .. well you know between the bathroom runs and the pain. Im on Elmiron, atarax,and topamax,(Vicadan if really needed, but not that night ) so the dreams and the sleep come and go.. a big you can tell i'm a bit embarished to say this last part...blushing..cause this never happened to me before..and i'm well..kind of shy... anyway.. take it at face value.. i was lying there, not sleeping,..or sleeping... and a voice told me that i could feel joy and pain at the same time. I thought about that and a smile came to my face and the voice said "see you feel pain know don't you" and I answered "yes" and the voice said and "yet you smile with joy "and i said "yes" and felt my smile widen and my pain grow just a bit less.
    I woke the next day( at 2 pm) and I still had pain though it was less and with my pain I took my shower, and with my pain I got dressed and with my pain I felt felt happier than I have in a year and I pray to god that i can some how keep this going from day to day.

    I don't know if it was a dream or not. I do know one thing. I know i am going to be with my family this thanksgiving
    Randy Sarner

  • #2
    The pain is sure hard to deal with and can be depressing. In reply to the end of your story I would say "The joy of the Lord is my strength" and praise God for that and thank Him.
    It is not always easy but without my faith I would be a basket case..
    Love, Pam grouphug
    God brought me to it, He will bring me through it!!!

    Diagnosed 2003
    by cysto/hydro
    Elmiron took almost a year- made me sick, caused diarrhea
    Pyridium -Made me sick
    Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
    Tried DMSO instill- had 5 out of 6
    Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
    Cysto/hydro April 6th 2011-- on expansion only hold one cup
    IBS/ IC
    High blood pressure meds and Crestor
    Metformin (prediabetic)
    Sinequan (depression)


    • #3
      grouphug grouphug grouphug grouphug Thankyou so much for sharing your story with us. That was God talking to you hon. God is our refuge and our strength. He told me the same thing that I can have joy and pain. I am trying to be happier this holiday season and get in the spirit. I am having a blast Christmas shopping but the bladder doesn't like it though. I just need to take it easy. Thanks again. What an inspiration you are to me.
      Happy Thanksgiving.
      Hang in there , There is hope.
      There is hope. Prayer works.

      Love, Debbie


      • #4
        Hi Randy--

        Thanks for sharing your story! I hope you have a wonderful, ic-free Thanksgiving!

        Hugs and love,
        Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


        • #5
          Thank you for sharing your story!!! I love when thoughts like that come to me. I call it God, but I know not all see it that way. I'm glad whatever you call it happened for you.

          Diagnosed August 2001

          Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

          Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

          I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


          “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

          “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


          • #6
            Hi Randy!!!!!!! Thank you for sharing your story.
            I am so sorry you have had to go through so much. I am thrilled that you can have Thanksgiving with your family this year, but even more thrilled that you are thanksful that you can, and seemed to have had a spiritual self growth experience when in so much pain.

            I don't know if you remember chatting with me last night, but I hope you come back to the chat room again.

            I truly hope that all of suffering ends and you can move on in your life, I wish that for all of us. grouphug grouphug grouphug grouphug
            Faith, Hope, and Love,

            I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

            IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
            or find me on facebook
            Be the Miracle! & Pay it Forward!

            [email protected] please contact me...I am here to help!


            • #7
              Hi Randy, and a great story, I ams so glad you are having Thanksgiving with your family. I truly believe that God speaks to us in many ways, and I know, there are times I have been helped to get through a difficult situation. Hope you have a wonderful Thanksgiving, and your pain eases. God bless and thanks for a great post, hugs Iris hi angel grouphug
              Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


              • #8
                Randy thanks for sharing your story with us. I agree with debbie i believe that was the Lord talking to you.
                I pray you have a pain free thanksgiving and enjoy your family and friends.
                we are here if you need us.
                please let us know how your thanksgiving goes

                Last Thanksgiving I cooked for hours and hours on my feet my husband dad and children was out side cutting firewood Oh the pain was awful before i got done cooking i had hop in the tub twise trying to ease up the pain took my pain medicine but wouldnt take it at full strenth afraid i would burn something. needless to say after all the pain i suffered trying to get the meal done everyone loved it most of it was not ic friendly
                i was really upset with my mother in law we got in to a fuss on the phone she was to come up for thanksgiving dinner and she asked me to make a special cake for her i went out of my way made it homemade made sure everything was perfect for her to call and say bring me a piece of my cake i'm sick we got to her house and she was happy as she could be laughing jokeing there was nothing wrong with her she didn't want to drive up here which is only a 30 min drive for her so she decide to eat at her sister which was fine with me but she didn't have to have me go threw the trouble of doing something special for her for her not to show up. needless to say i was angery and so was my husband he knows how hard i worked and needless to say again she didn't get her cake i left it in the car and when i found out she wasnt sick she didn't get it!
                but i'm doing it again this year she is invited again but i'm not going out of my way for her either she comes or she dont its not going to hurt my feelings this year. I wish i could divorce my in-laws!
                Medicine taken daily or as needed:
                1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
                2. MS.Cotin 100mg 3x daily
                3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
                4. Fentanyl 100 mg Change every 48hrs.
                5. Gentamicin 80mg install after each rescue treatment
                5 Leviquin 500mg self start as needed.
                6. Klonopin 1 or 2 daily as needed.
                7. Prosed/DS as 1 every 6hrs as needed.

                I have IC, but IC doesn't have me anymore!