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  • I have a date for second bladder removal!!

    Hi all,
    I hope it's ok to share some news with you all.
    I spoke to my lady surgeon today.
    She said that she will do my second bladder removal op on July 12th.
    She said that she probably won't bother with the Botox injections as the op is 9 weeks away.
    I have been very ill over the last few days and have had stabbing pains and other problems to cope with, so my surgeon said she will do the op as soon as she can get me in.
    She phoned me and said she has a date for me and that she will do the op herself.
    I am pleased it will be done and hopefully it will sort out all of these problems I have been getting.
    She will remove the bottom half of the bladder and the urethra and the nerves in the hope that I will continue to cath through my mitrofanoff and won't leak everytime I sneeze or cough or move.
    This means I will have had two major ops in 8 months.
    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.

  • #2
    Oh Mum.. I am so sorry they didnt do it right the first time...((((((hugs)))))))
    You have been through soooo much.. I wll keep you in my prayers please keep us informed....

    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


    • #3
      hugs !!!

      Hiya hun,
      The surgeon who did my first op was not my first choice of surgeon, I was meant to have a lady surgeon.
      The lady surgeon asked him to do the op because she took maternity leave, now's she's back and will be doing my second op.
      This time it will be done properly.
      The last surgeon only took half of the bladder out, this time the whole lot is coming out.
      Thankyou for thinking of me.
      hugs to you and your family
      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
        Hi Jill ,

        Really been thinking about you and worry. I am glad they are helping you and pray that this surgery will do the job for you. Thank you for letting us know, and sorry you are still in pain. I wish I could take the pain away.

        Sending hugs, Trishann

        Comment


        • #5
          Jill,

          You are so incredibly strong, emotionally and physically! July 12th can't come soon enough. So glad that this Surgeon will be taking great care of you.

          My heart and prayers are always with you.

          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


          • #6
            At least you have a date to look forward to now. I hope that the removal helps. It is so hard to live with a messed up bladder. I will be thinking of you on that day and those leading up to it.

            Best of luck!

            Comment


            • #7
              I still can't believe that this other surgeon didn't do the surgery that you had agreed to. I am so sorry that you have to go through all of this but so happy that you will get the correct surgery soon and hopefully start to feel better.
              Christine



              I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
              1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
              2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
              I have tried every oral medication as well as rescue instills and DMSO.

              I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

              Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
              Also proud mom to the best Bullmastiff on earth, Claus

              Comment


              • #8
                Brilliant! So glad it will be taken care of properly this time. Just let me know if I can be of help in way before or after, okay? Thanks for the update.

                Comment


                • #9
                  Jill,
                  I am so sorry you are going thru this again! I pray and hope that this time will be so much better for you and you will feel like a totally new person. You are in my prayers and thoughts! Feel free to PM me if you want to talk . Are you getting an Indiana pouch? I've been off the boards for awhile so I'm not quite up to speed on everthing thats been going on.
                  Blessings & Hugs,
                  Eva

                  Comment


                  • #10
                    Congrats and good luck!
                    Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

                    I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

                    Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

                    I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!

                    Comment


                    • #11
                      I could quite easily give you all a great big hug !!
                      Thankyou everyone for all of your kind thoughts etc.
                      I spoke to the surgeon earlier today and she said everything will be ok.
                      Because I already have a neo bladder and a illeal conduit I won't need another pouch made, she will just remove the rest of the bladder and the urethra and nerves and make the neobladder bigger.
                      The hospital have arranged a room for me for the night before, so I don't have to travel so far and so early in the morning.
                      Have to be on the ward for 7am, I am the first patient on the list that day.
                      The last time I had my op, I went down to theatre at 8am.
                      Was in there for 8+ hours.
                      The room they have arranged for me is a 5 minute walk to the hospital, it's only around the corner.

                      I hope you are all well !!!
                      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
                        Just thinking about you and the date is getting closer so you can be on your way to recovery. Thoughts and prayers are with you.

                        Sending hugs, Trishann

                        Comment


                        • #13
                          Wow, hope you recover quickly.

                          Comment


                          • #14
                            Thankyou !!


                            Thanks for the replies,
                            I am getting more nervous this time than I was the first time round because of all of the problems that have happened since the first op.
                            On the other hand I am hoping and praying that is the op that will make me well again.
                            My hubby is giving me hassle about the op today, he say's I should make a complaint because I consented to a cystectomy and neobladder and got a clam cystoplasty with a stoma instead.
                            I just want the lady surgeon to put everything right and leave it at that, but he's being awkward about it all and wants to take it further.
                            The surgeon who did the clam said he didn't see any reason to remove the whole bladder and decided to take half out instead.
                            Hubby said that he should have woke me up and discussed this with me. I don't think so !!
                            I mean the decision was made at the last minute while I was open on the operating table.
                            Not to mention the fact that I nearly died from a burst stomach ulcer during the op and they had to act fast to keep me alive.
                            Why is it that men don't see things the way us women do?
                            Hubby just won't listen to me and went out after we had words about it all.
                            My lady surgeon phoned and asked to speak with him to explain things and he refused to speak to her. I am so embarassed about this and not pleased with him at all.
                            He behave's like it was him who had the IC and PBS and all the other problems that go with it.
                            I had to remind him that it is me who has suffered for over 20 years and me who has been through hell and back.
                            Not to mention the fact that I went through major surgery and it hasn't worked and now I have to go through it all again in 7 weeks time.
                            Am I being unreasonable?? I never meant to be so horrible to him but things just got on top of me and I got fed up with listening to him keeping on moaning all the time, so I told him to shut up!!
                            I hurt my mitrofanoff today by accident, I walked into the puppy gate after tripping over the cat.
                            It has been bleeding quite alot today, but the Doctor said I'm ok.
                            Hubby will be back soon and it will all start again, so I will just put my MP3 player on and listen to my fav music and just pretend he's not here for a bit and when he's calmed down I will speak to him.
                            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


                            • #15
                              Jill I really don't think it is good for you right now to fight this situation, you are really not in a good physcial condition to do so. Maybe if you bring this up with your husband this way, maybe he can understand. Right now the issue is about getting you better not a court battle.

                              Maybe after you get better than you and your husband can talk about it and then decide what to do. I don't think I would dismiss what your husband is saying even if you think he is right or wrong. But I would let him know right now you need his support to get better, this is what needs to come first.

                              I hope I am making sense with this because my heart is with you and I am praying for that day that you are doing better.

                              Sending hugs,
                              Trishann

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