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  • #1

    I can't win !!


    I have caught a cold and it's playing havoc with my bladder.
    I was perfectly fine until I went to see my uro in london tuesday to discuss her removing the whole bladder and starting again.
    Every time I cough or sneeze it's too late and I have to hope I can make it to the bathroom quick, most time's I don't make it and you know the rest.
    To top it all so far today I have had 4 phone calls from the uro's team regarding my surgery.
    The major of london decided that he woul try and save energy by switching of all of the electricity in central london last night?????????
    Anyway!! all this has caused a right pain for the hospital's computer back up system and now they are phoning all of their patients who are major surgery in the next four weeks to check pre-op details etc.
    This is a real pain as every time I need to cath, my phone rings
    You could say I'm having a BAD day today.

    (((hugs to all)))
    I have had IC and PBS for 20+ years.
    Tried every medication I can think off.
    Had a Clam Cystoplasty with Mitrofanoff in November 2006.
    Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
    4th october 2007.

    Check out my profile on www.myspace.com/surreychick.
    if you want to know more about me.
    Tags: None
  • #2
    I am very sorry things are going like this. Lets hope they get yopu all squared away. Things seem pretty tough right now, but try your best not to stress! Stress is so bad. I hope your cold clears up quick too. I'll say a quick prayer for you and your doctors mum. I hope you day gets better.

    Erika
    IC diagnosed officially via cysto/urodynamics 1/26/07

    Grade II Endometriosis diagnosed via lap 12/11/07

    "Fall down seven times, Stand up eight."

    "Life is a tragedy for those who feel and a comedy for those who think."

    Current Treatments:
    Interstim Since 5/25/07!
    Birth Control

    Comment

    • #3
      Thankyou !!

      Erika thankyou,
      This cold has really kicked in big time and I have a cough now too typical!!
      I will get myself sorted out soon enough, must concentrate on getting rid of the sneezes first though it's driving me crazy.

      take care x
      I have had IC and PBS for 20+ years.
      Tried every medication I can think off.
      Had a Clam Cystoplasty with Mitrofanoff in November 2006.
      Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
      4th october 2007.

      Check out my profile on www.myspace.com/surreychick.
      if you want to know more about me.

      Comment

      • #4
        Mum,

        You know im here for you!!! Im sorry you got a cold on top of everything else you are going through.. But I promise you will get through all of this..(((((((((hugs)))))))

        Ronda
        Hugs
        Ronda

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


        Link to Patient Handbook:
        http://www.ic-network.com/handbook/

        Diet Reference Sheet:
        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.


        ICN 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.

        Comment

        • #5
          Hi Hunny!!
          My cold has really kicked in over the weekend, I have to try really hard to get rid of it as the op is two weeks away.
          Me and hubby have ben talking and are trying to work things out for the both of us.
          I know you are here for me, you alway's have been.
          I hope you are well today, sending a huge hug to you and your family xxxx

          Love Jill xxxx
          I have had IC and PBS for 20+ years.
          Tried every medication I can think off.
          Had a Clam Cystoplasty with Mitrofanoff in November 2006.
          Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
          4th october 2007.

          Check out my profile on www.myspace.com/surreychick.
          if you want to know more about me.

          Comment

          • #6
            Hello Jill!

            Just checking up on you...any better?>

            Erika
            IC diagnosed officially via cysto/urodynamics 1/26/07

            Grade II Endometriosis diagnosed via lap 12/11/07

            "Fall down seven times, Stand up eight."

            "Life is a tragedy for those who feel and a comedy for those who think."

            Current Treatments:
            Interstim Since 5/25/07!
            Birth Control

            Comment

            • #7
              Hi ya,
              Feeling a little better today thankyou, apart from this blooming cold which is really annoying me right now.
              My uro surgeon just phoned me and said that I need to go to London and have some blood test's done because I may need another blood transfusion after the op.
              It's a real pain in the butt having to travel all the way to London just for a blood test and it cost's loads too.
              How are you today? good I hope !!
              Time is going so quickly, I have 2 weeks and 3 days until the major op and have nothing organized yet.
              I think I will have to get it all done though otherwise there will be too much to sort out at the last minute.

              (((hugs))) love jill xxx
              I have had IC and PBS for 20+ years.
              Tried every medication I can think off.
              Had a Clam Cystoplasty with Mitrofanoff in November 2006.
              Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
              4th october 2007.

              Check out my profile on www.myspace.com/surreychick.
              if you want to know more about me.

              Comment

              • #8
                Glad to here you are feeling a little better. Just wish you could knock that cold out.. I still am praying for you I sure wish I could be there so you could have some support while you have your surgery..(((((((hugs)))))))))

                Ronda
                Hugs
                Ronda

                ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                Link to Patient Handbook:
                http://www.ic-network.com/handbook/

                Diet Reference Sheet:
                http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                Meds I have Tried:
                Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                Lexapro< Bad reaction to this med!
                Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                Dx With IC in Nov 2006 with Hydro/Cysto
                Hydro/Cysto Caused Bladder to Rupture.

                Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.


                ICN 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.

                Comment

                • #9
                  Originally posted by mum43 View Post

                  Every time I cough or sneeze it's too late and I have to hope I can make it to the bathroom quick, most time's I don't make it and you know the rest.

                  (((hugs to all)))

                  Have you been evaluated for urinary incontinence? Bladder removal is such a serious step. Leaking urine is also a symptom of urinary incontinence.
                  TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                  My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985
                  Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                  Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                  I post to encourage and offer total support for rescue instillations.
                  Find me on facebook: L. Clark Thomas
                  Louann

                  Comment

                  • #10
                    I am so glad you are feeling better! Hopefully you won't need a blood transfusion! At least they are taking precautions, its too bad you have to travel feeling yucky. Lets hope you get some good news!

                    Erika
                    IC diagnosed officially via cysto/urodynamics 1/26/07

                    Grade II Endometriosis diagnosed via lap 12/11/07

                    "Fall down seven times, Stand up eight."

                    "Life is a tragedy for those who feel and a comedy for those who think."

                    Current Treatments:
                    Interstim Since 5/25/07!
                    Birth Control

                    Comment

                    • #11
                      Thankyou for the replie's,
                      Erika, thankyou hunny, I hope it stay's nice, sunny and dry tomorrow when I go to London.
                      It's a 3 hour journey and a little sunshine make's the day seem better.
                      Rhonda I could really do with a friend just like you over here in the uk.
                      You are a real tonic thankyou (((hugs))).
                      L.Thomas, I have been invalidated thankyou and will be having my urethra removed in 2 weeks and 3 day's time, I am praying this will end the leaking of urine and the pain in the urethra.

                      Love to all
                      I have had IC and PBS for 20+ years.
                      Tried every medication I can think off.
                      Had a Clam Cystoplasty with Mitrofanoff in November 2006.
                      Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
                      4th october 2007.

                      Check out my profile on www.myspace.com/surreychick.
                      if you want to know more about me.

                      Comment

                      • #12
                        Jill, plenty of fluids to help get rid of the cold! Sorry the leaking is kicking in big time for you right now. I bet this is one surgery you are anxiously looking forward to I for one, will be watching for your post op post.
                        L.Thomas, Jill had her bladder out, her current set up leaks and she has trouble with her urethra which they left in.

                        Comment

                        • #13
                          Jill,
                          my heart goes out to you! I am praying that you will find the relef that you seek with this next surgery! I had Mine in Feb. I feel Like a New Person!I have an Indiana Pouch! I pray for the same kind of relief for you as Well!.
                          Blessings & Hugs!
                          Eva:woohoo:

                          Comment

                          • #14
                            (((((((((((((Jill))))))))))



                            Kara
                            Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                            "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                            I also have some journals of my journeys, past and some present at:
                            http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                            Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                            Comment

                            • #15
                              sending you lots of hugs
                              Miss Bessie

                              Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

                              Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

                              Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

                              Comment

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