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  • Help me!

    I left a message with my URO today. Actually, I was crying. I said I feel like I am dying. My urgency is so bad that I feel like I am losing my mind. I have tried antispasmatics. SOME of them worked for a liitle while (3-4 weeks) and I felt GREAT! Then they stopped working. I tried 7 instills last summer. The first and fourth worked for 1-2 days and I felt GREAT! And then they didn't. I had a hyerstectomy. (My cervix was touching my bladder and it was thought this could be causing my problems.) I had an instill on Friday. Most of it leaked out during the procedure. Saturday and Sunday I felt horrible. I had my urine tested on Monday. It was positive for bacteria and nitates. Today the culture came back. NO INFECTION. Apparently the AZO altered the dip.

    The nurse called me back. The URO would like me to try Vericare with the medication I am taking currently. She would like me to have a BM every day. (I have severe constipation.....so that means Miralax and laxatives every day.) I asked about trying another instill, maybe with different medications. The nurse said I could talk to the URO about that at my next appointment, but apparently my URO has never done this before. I started PT today. I have some PD tightness we are going to work on. And then she said IT. "Would I like a consultation regarding bladder removal?" I was shocked. Now, to be fair, I have brought up the issue of bladder removal to her, but she has always assured me we had more options. (This is what I like about her.) My URO has been wonderful to me. She listened to me as I sobbed in her office when the Interstim failed. The last time I was there, she was hopeful that we would figure something out.

    So, I made an appointment for a consultation regarding bladder removal. I want to try everything else first. (Strict diet, PT, continue with Elmiron, regulate my bowels somehow, Botox and anything else possible.) I even read an older post on here where a superpublic cath helped someone with urgency!) In the meantime I am hoping my bladder will calm down. I have NO PAIN, only servere urgency and frequency. I am about to lose my job. Thank goodness my husband has good insurance. I will speak to the surgeon, but I need to keep trying things. I need a second opinion and I will seek one. I don't know what else to do. I know most people on this site have their bladders removed because of pain. PLEASE share your stories with me regarding bladder removal, especially if you have had urgency issues. Right now I am eating next to nothing to try and get my bladder calmed down. I know it takes time.

    Thank you for listening.
    Diagnosed with IC in May 2011

    Current Medications:
    Elmiron 400 mg daily
    Imipramine 75 mg daily

  • #2
    You may be surprised at how much better you may do if you can get your constipation under control. For a while during my chemotherapy I had a severe constipation problem and it definitely caused me bladder pain. Once I got that under control, the bladder calmed down. There can be a lot of pressure down there with constipation. I take senecot if there's even one day without a BM. I absolutely don't want to go there again.

    If you do end up deciding on having your bladder removed, I'm sure Judith, one of our ICN volunteers, will be able to offer you some helpful information.

    I'm sending well wishes your way.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      I agree with Donna, as far as constipation, it really can impact the other organs near by and in not so nice ways. I know the urgency and frequency can be maddening, that's the main reason I had my bladder out, though there were other factors in deciding, like the fact that I had no capacity left, I was incontinent with out even realizing I was losing urine till I could feel my pants be wet, etc,. If it looks like the surgery is in your future I will be happy to answer questions for you if I can. Hope today is not too awful for you, hugs, Judith

      Comment


      • #4
        Hi,
        I had my bladder removed October 25, 2012. I have to say I would not change my choice to have my bladder removed for anything. I to would call my urologist in tears . Feeling like I was going to die.. I was sure I was the pain was absolutely horrible.. the not sleeping because I had to get up so often to pee. My doc is amazing. He tried everything. He tried meds, he did instills (which btw threw me into such flares the dying feeling tripled) the we did 7 rounds of botox injection surgery. That helped at first but that was short lived. The only medication that worked for me was valuim suppository gel. That also worked for awhile but it drugged me up pretty bad. So one day I went to see my URI doc and he said bladder removal was my last hope.. so I went with it.. I personally had complications during and after surgery. First surgery was supposed to last about 10 hrs or so and it was supposed to be all robotics but because of all my past surgeries on my tummy I had ALOT of scar tissue so they ended up cutting me open. Surgery for me lasted about 13 hrs. I don't remember anything but what has been told to me about the first 4 days after surgery. I guess my body went into shock and my heart rate dropped to 35 and they had to give me 2pints of blood. (I promise I am not telling you all this to scare you just sharing the whole story) I was only supposed to be in the hospital for 5 days but ended up there for 9 days but I only remember the last 4 or so days of my stay. I got to come home just in time to see my daughter compete in cheer competition. I have now found that I seemed to have a lot of energy the first couple of months and now everything is catching up to me. I get to the point where I am just exhausted and need sleep..but you know what I am NOT IN PAIN..and DO NOT have to pee every 15 minutes. And the only time I get that "urge" to pee is when i first get into bed at night. And no that is not an every night thing. So now I have a bag attached to my side. And I am trying hard to get used to my new "normal" I don't have to make late night calls to the doctor or go to the er begging for relief. I can go places and not have to know where the nearest bathroom is. Most of the time I forget i even wear a bag. Like I said i would not have done it any different. I am glad I don't have a bladder. Now I just need to get my strength back. Good luck with your journey and I am here if you ever have a question or need to talk..


        With all the pain in the world comes love and hope.. For someday they will find the cures for all the pain we suffer and just take it all away and we can again be pain free and enjoy life.. and remember those who suffer the same pains and sorrows are usually the ones with the most understanding hearts
        Hugs and Loves
        Melinda


        Multiple health issues.. IC , Type 2 diabetic, Knee problems (7 surgeries), Fibromyalgia, Cystoscope with botox injections done on 11/17/11, Hystorectomy in 2005, Asthma, Migraines, High BP, High colestoral, pseudotumor cerebri and Depression..

        Comment


        • #5
          Thank you for all the kind words. I cancelled my consultation for bladder removal. The day after I wrote this post, I woke up and felt 100% better. I am not sure why. Maybe the Elavil started working. Maybe it's the diet. Maybe a combination of things. Since that day, I am not 100%, but I still feel better. My bladder capacity if about 450 under GA.

          I don't know if this is possible, but I want to try and heal my bladder.....mainly through diet and Elmiron. I may also try food allergy testing. What do you all think?
          Diagnosed with IC in May 2011

          Current Medications:
          Elmiron 400 mg daily
          Imipramine 75 mg daily

          Comment


          • #6
            I think it is certainly worth continuing exploring all options put there. Hopefully you will find the key to letting you live a somewhat normal life.

            Comment


            • #7
              Originally posted by KristinKathryn View Post
              I left a message with my URO today. Actually, I was crying. I said I feel like I am dying. My urgency is so bad that I feel like I am losing my mind. I have tried antispasmatics. SOME of them worked for a liitle while (3-4 weeks) and I felt GREAT! Then they stopped working. I tried 7 instills last summer. The first and fourth worked for 1-2 days and I felt GREAT! And then they didn't. I had a hyerstectomy. (My cervix was touching my bladder and it was thought this could be causing my problems.) I had an instill on Friday. Most of it leaked out during the procedure. Saturday and Sunday I felt horrible. I had my urine tested on Monday. It was positive for bacteria and nitates. Today the culture came back. NO INFECTION. Apparently the AZO altered the dip.

              The nurse called me back. The URO would like me to try Vericare with the medication I am taking currently. She would like me to have a BM every day. (I have severe constipation.....so that means Miralax and laxatives every day.) I asked about trying another instill, maybe with different medications. The nurse said I could talk to the URO about that at my next appointment, but apparently my URO has never done this before. I started PT today. I have some PD tightness we are going to work on. And then she said IT. "Would I like a consultation regarding bladder removal?" I was shocked. Now, to be fair, I have brought up the issue of bladder removal to her, but she has always assured me we had more options. (This is what I like about her.) My URO has been wonderful to me. She listened to me as I sobbed in her office when the Interstim failed. The last time I was there, she was hopeful that we would figure something out.

              So, I made an appointment for a consultation regarding bladder removal. I want to try everything else first. (Strict diet, PT, continue with Elmiron, regulate my bowels somehow, Botox and anything else possible.) I even read an older post on here where a superpublic cath helped someone with urgency!) In the meantime I am hoping my bladder will calm down. I have NO PAIN, only servere urgency and frequency. I am about to lose my job. Thank goodness my husband has good insurance. I will speak to the surgeon, but I need to keep trying things. I need a second opinion and I will seek one. I don't know what else to do. I know most people on this site have their bladders removed because of pain. PLEASE share your stories with me regarding bladder removal, especially if you have had urgency issues. Right now I am eating next to nothing to try and get my bladder calmed down. I know it takes time.

              Thank you for listening.
              Update: I did not have my bladder removed. I was misdiagnosed with IC. I went to Beaumont Clinic in Royal Oaks Michigan and saw Dr. Ken Peters. I then saw a wonderful PT named Lisa Odabachian <[email protected] I had severe PFD. Lisa did PFT completely differently then what I had been receiving. She did anexternal myofascial release to pelvic floor muscles, primarily iliococcygeus, pubococcygeus, obturator internus, the perineal body posteriorly, and ischiocavernosus and bulbocavernosus anteriorly. Lisa no longer works at Beamont but can be reached that the above gmail. She is amazing!!

              Comment

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