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Possible success story? But definitely a vent I've needed for a long time! (Stones)

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  • Possible success story? But definitely a vent I've needed for a long time! (Stones)

    Dear wonderful people,

    24 months into this long journey. I know this is IC but I figured myabe symptoms is the best place to post this. I know this probably sounds a little corney, but for the few weeks I have known about IC all you have become like a family for me ... People I feel could understand me. I do not officially have my IC diagnosis (as they require like CT scan and bladder scop). CT Scan found a rather large kidney stone and that a stent that was supposed to be removed on October 18, 2009 was still in there. The kidney stone is in my bladder and I was told it was between the size of a gumball and a golfball. That plan today was to go into surgery to bust open the stone and to remove the stent. And to go ahead and give me my bladder scope. (Why take 3 trips to Walmart ... you're already there, right lol)

    So I just wanted to share what happened today in surgery. The stone was the largest stone I've ever heard of. The urologist said it was the size of an ORANGE, which would explain that i have no room for urine and they could not remove my stent bc there is so much calcium around it. Funny for 2 years I've had a bladder infection and tons of pain. My orange size stone was busted up into a million little pieced so I imagine that my bladder looks like a bag of pebbles. They also put in a new stent. Since my sister is taking care of me now, they have asked her to call into the urologist and set up an appointment for me for shock waves .... she said it's like a sonogram that vibrates so they can knock that calcium off my stent.

    When they thought my kidney stone was the size of a gumball looking at my CT scan they gave me pain medicine and have become more sympethtic. I have tons of pain medication. Although I do believe getting rid of this kidney stone will very much help the pain, I do firmly believe I have IC still. Not that I want it, but before they gave me then stent the pain was the same kind of pain which has been described by many of you. I guess it really has hurt my feelings dealing with this for 24 months, always being brushed away as a UTI ... Here is some bactrum. My husband recognized that's all they're doing to me and thought I was having an affair since I would no longer have relations. The first stent? Well I don't think it was put in right or that I never had a stone, but it was blocking this puppy so maybe my tummy will look smaller. And I also wanted to share (probably a little graphic), but I'm up tonight just to potty again and again and I kind of felt down there and felt something poke my finger and if I kind of open up my inner labia I can litterally see stones and when I stood up looking one fell on my bathroom floor. I don't know that this is a success story per, say bc I do believe I have interstitial cystitis but I do feel like they have to go through steps and I will cooporate bc my quality of life has been affected greatly. I cannot play on the floor withi my 1 year old I was GM at my last job and had to quit. I now work at a call center doing customer service for a cell phone company. Please don't shun me from here since I may no have IC. You people I have never met have helped me more than anyone in the past 2 years. I want to thank you all. I am to the point of an extreme depression and lonliness. Had I not've been a mother I would have taken the easy way out. But I don't believe in that anyway. I'd go to the doctor and they'd tell me I have a UTI and offer pyridium(sp?) for my "discomfort." Today before surgery I told them if I could end up with "discomfort" for the rest of my life, I'd be a happy customer. I'm 21 I don't look like there is anything wrong with me so why would they take me seriously??? I will come back to update all you beautiful, strong, wonderful women (and men). Thank you so much for your posts and the chat last Monday. Made me feel like I wasn't an outcast. Thank you and God Bless you all!

    PS - Have any of you ever heard of a stone the size of an orange? This is really outrageous to me!

    Loving thoughts,
    Emilee

  • #2
    I kind of looked over this post after the fact and I'm sorry for the mispelling of words like scope or the bad grammar I used. Forgive me!!!! It's 3 in the morning, and my mind is racing faster than I can type! Thank you all again for everything.

    And to the creators/directors of this forum. Thank you so much. It's not easy just to have these things in common with my work friends or relatives. I try to explain but you all made me feel so welcome here and you are like angels! Thank you soooo much really!

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    • #3
      I haven't heard of a stone that large! It's no wonder you have pain.


      Donna

      P.S. I'm glad you found us.
      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

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      • #4
        Wow, Em, thank goodness they found that boulder! It really is no wonder you are so sore, and probably will be for a while. Hopefully once you heal up a bit it will not be IC, but we are all interested to hear whatever end result you have, and everyone is here for you. Please let us all know. Jill, wife of Bob

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        • #5
          I will start by giving you a welcome first of all. I know I had never heard of a kidney stone the size of an orange before. Wow! That just makes me feel like cringing right now. It could be that you don't have IC after all. I can't say for sure. I do know you should be able to stay.(or it won't bother me)(in case you don't have IC) Oh! I happen to be a male, by the way. Many of us don't look like we have got anything wrong with us. We still know better. Yep!

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          • #6
            So sorry for what you have been through. A stone that large is awful, I'm sure, and the stent - I can't believe that !

            I had two stents put in because they discovered that I had blockages on both sides in the ureters from kidney stones and they didn't want me to go into kidney failure. I was so uncomfortable with the stents in for 8 weeks - I can't imagine one being left in there for so long. How incredibly awful !!!! They did the lithotripsy to break up the stones and thankfully it was successful very quickly.

            I was only officially diagnosed with IC in November after a cysto with hydrodistension. As I had worse and worse pain, I got very disappointed thinking I might live like that for the rest of my life. We didn't know until about 3 months later that it it was really from the kidney stones. Now I feel like a new woman and I've only had one mild flare-up of IC from eating tomato sauce. Sometimes I can eat it with no symptoms as long as I take my Prelief. The Prelief didn't cut it this time around, so I'll definitely be more careful from now on.

            I hope that everything works out for you and that the stent removal provides you with even more relief !
            Colleen

            * ITP - autoimmune blood disorder - spleen removed 1978 and in remission since
            * MS- diagnosed Jan-2010
            * IC - confirmed by cysto and hydro Nov-2010 - currently taking no medication
            * possible adenomyosis - suspected by urogyno May-2010
            * low Vitamin D levels - taking 2000 IU daily
            * sleep issues - 1/2 alprazolam

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