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Flare with a Kidney Infection

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  • #1

    Flare with a Kidney Infection

    Hi! I am new to the ICN but unfortunately not new to IC. I was diagnosed in June 03 after a hydrodistention. I was started on Elmiron and Elavil in July of that year. Since then I have had back to back UTI's that never seems to go away. I have also had to be admitted for pyelonephritis 3 times since my diagnosis. I have since moved to a new city where they are more proactive with pain control and IC. Thanks to the kidney infection, I am in the middle of a massive flare. Percocet works at night for the pain, but I am a nurse and can't take it at work. So by the time I get home, I'm about the keel over. I also found out last week that I have a Grade 3 cystocele that needs repaired too. I am so glad I found this message board. I have never come across anyone else with IC. Just looking for some feedback from some vets. Thanks in advance.
    (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

    [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
    :angel: IC Angel Volunteer Coordinator :angel:
    :) Contact me via PM or e-mail if you would like to help
    I have learned all about life in 3 words: It goes on! :D--Robert Frost
    PCOS 7/85
    RSD 7/94 :headbang:
    Endometriosis 9/98 :toilet:
    Antiphospholipid antibody syndrome 9/99
    Kidney stones--too many to count
    Factor V Leiden mutation 10/02
    IC 6/03 :evilsmile
    Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
    "Spirit is an invisible force made visible in all of life"--Maya Angelou
    "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]
    Tags: None
  • #2
    Welcome, you have come to the right place. I can not tell you how many times I have received support and HUGS and comfort from this site. I was dx almost 2 years ago. Welcome to the boards. Sandy N. grouphug

    Comment

    • #3
      Hi Babs... welcome to the ICN. I am a newbie. I was just diagnosed with IC last week with a cysto/hydro, but I have found so much support here on these boards during the last few months... you have really come to a great place.

      Jen
      ****
      Jen

      *Diagnosed with severe IC in 2004
      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

      **I am not a medical authority nor do I offer definitive medical advice. 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.

      Comment

      • #4
        Hi Barb, and welcome to the IC boards and to the IC family, sorry you have the diagnosis of IC, but you are among many friends here, who know exactly, the ups and downs of IC. Lots of information, and supportive, and caring gals, and our few guys. Welcoming hugs Iris. hi 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.

        Comment

        • #5
          I'd like to add another welcome to the IC Network.

          I'm sorry you've had such a difficult time with infections --- is there a possibility the cystocele is contributing to this? I know that if you have residual urine, it can result in infections. I hope you find some answers very soon.

          Sending a welcoming hug,
          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.

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          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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          • #6
            I also wanted to add to the welcome. I don't have any answers for you but hope you can feel better soon. kissing
            Jolene

            "Life is what happens when you are making other plans" John Lennon

            IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

            Information for Patients can be found here.
            http://www.ic-network.com/patientlinks.html


            Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




            Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

            "IC Angel 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."

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            • #7
              Thanks for all the welcoming responses. It's nice to communicate with people who understand my experiences. I think the cystocele is a contributer to the frequent infections and I get stuck in a vicious cycle of infection, flare, infection, flare due to the residual urine. I was told that I retain about 200 cc of urine after every void. This is probably my worst flare to date, and is becoming very frustrating. I think being a nurse makes it harder sometimes(especially with chronic pain) because I see the other side too, and frequently interact with peoples archaic attitudes about pain relief. Do you guys find that long acting pain meds work better(like Fentanyl patches, etc) or short acting rescue meds? I'm holding out hope that the Elmiron will kick in at some point. The Elavil didn't help at all. Thanks for your input. :cool:
              (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

              [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
              :angel: IC Angel Volunteer Coordinator :angel:
              :) Contact me via PM or e-mail if you would like to help
              I have learned all about life in 3 words: It goes on! :D--Robert Frost
              PCOS 7/85
              RSD 7/94 :headbang:
              Endometriosis 9/98 :toilet:
              Antiphospholipid antibody syndrome 9/99
              Kidney stones--too many to count
              Factor V Leiden mutation 10/02
              IC 6/03 :evilsmile
              Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
              "Spirit is an invisible force made visible in all of life"--Maya Angelou
              "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

              Comment

              • #8
                hugs I hope you are feeling better and doing good soon.. ~welcome to the boards~
                Brat
                'The will of God will never take you where the Grace of God will not protect you.'

                Comment

                • #9
                  Babs,
                  Welcome and glad you found us, this board has been a lifesaver for me. As far as pain control is concerned, I just started a pain med that I take am and pm and then have something to take for break thru pain, for me this has been ABSOLUTELY the best way to control my pain, I had just been taking meds when I had pain that I just could not bear, but it was a viscious cycle, I never knew if I should take my meds or hold out for a time that was worse than the present pain and I ended up getting into a pain cycle that I could not control and thus ended up on the couch or in the bed as my life passed me by. I hope this makes sense, hang in there and take care of yourself.
                  Love,
                  Kim
                  khouse

                  sorry about the MAJOR run on sentence but it is so hard to type what you want to say and worry about correct grammar and puctuation!

                  Comment

                  • #10
                    Hi again all!
                    As if the beginning of the week wasn't fun enough, I got admitted to the hospital again(the antibiotics they gave me for the pyelo apparently weren't doing their job). I'm out now. This is by far the longest flare I have ever had. The bright spot in all of this is that one of the general surgeons I work with (I work in a clinic with general surgeons, plastic surgeons, and 2 urologists) advocated for me and jumped on the urologists to do something ASAP. The pain has been horrific all week--I got discharged from the hospital on Wed and I'm actually back at work. I afraid if I don't gut out going to work I will get fired even though IC is a recognized diagnosis. On top of that, found out my husband is headed to Iraq. Question to anyone: How often do you get hydos done? It worked really well for me the last time I had it done, but am wondering if there was a certain time factor that needed to be observed in between? cussing
                    (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

                    [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
                    :angel: IC Angel Volunteer Coordinator :angel:
                    :) Contact me via PM or e-mail if you would like to help
                    I have learned all about life in 3 words: It goes on! :D--Robert Frost
                    PCOS 7/85
                    RSD 7/94 :headbang:
                    Endometriosis 9/98 :toilet:
                    Antiphospholipid antibody syndrome 9/99
                    Kidney stones--too many to count
                    Factor V Leiden mutation 10/02
                    IC 6/03 :evilsmile
                    Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
                    "Spirit is an invisible force made visible in all of life"--Maya Angelou
                    "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

                    Comment

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