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Thanks Everyone

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  • Thanks Everyone

    Thanks everyone for the information i have alot of questions for the doctors on this weds. we are to go into detail about wich surgery is best for me. i think for me the inner bag. (sorry i get the names mixed up)seem to be my decission. i do have one worry that my kidneys are straining now. From what i have learned having your bladder out is straining on your kidneys! i will ask them about this on weds. i wish you all luck in your treaments or removals. I have a compacity of 38cc that was about 3 weeks ago. I am starting to get very sick in the mornings and starting to see blood in the urine. i wanted to enjoy some of the summer before the surgery but, i guess the bladder doesn't want to agree with me. they want to try and go with the middle of june maybe the end. they are worried to expand again for they feel the bladder will collapes. it is getting so small that i can feel the urge to go 24/7. even after i go the feelling is still there. i am scared a little i guess not of the surgery but of how my life will change. i don't want to be sick anymore. i have allways been a very healthy person until a few years ago. sorry to carry on just venting on all the fustration.
    thanks everyone for your imput it was very helpful and as i always say i would trust the people who have had it done. they have lived it.
    best wishes to all of you

  • #2

    We also had to make the decision of which type of surgery to go through.

    On June 14th I will be losing my 26 year old bladder due to severe IC.Presently, I can only hold 30cc's. I have had a foley catheter in for almost 5 months now because with out it, I wanted to commit suicide!

    I am having an Orthotopic Diversion(Neobladder): This relatively new procedure is being performed in selected surgical centers. This is a type of diversion in which the bladder is removed, and a new bladder, constructed from a bowel segment, is connected to the urethra, replacing the removed bladder. Patients then void through the normal urethral channel without the necessity of a catheter or bag. The development of urinary incontinence is one possible drawback of this procedure. My Doctor specializes in this type of bladder diversion after radical cystectomies.

    There are so, so, many surgeries to choose from. Augmentation Cystoplasty, Substitution Cystoplasty, Urinary,Diversion, Ileal conduit (Urostomy)Internal Pouches: Kock Pouch, Indiana Pouch, Mainz Pouch, Studer Pouch, Mitrofanoff Pouch, Mainz II Pouch, J Pouch, S Pouch, W Pouch, Pelvic pouch, Florida Pouch, UCLA Pouch, Illeo-Anal Pull Through, Barnett's Continent Intestinal Reservoir, as well as many more........

    You can find out a little more information on some of those pouches here:

    I’m here to tell you how strong you are and how great you’re doing, during this awful, difficult time in your life. I know it’s unfair. You don’t have to be strong all of the time. You can lean on us when you are down and tired. Don’t be afraid to ask for what you need from your family, friends, employer, and of course, your doctors.

    When are you having your bladder removed?

    Keep in Touch
    We will be going through the same situation.

    "Never take, I don't know how to help you as an answer."

    [email protected]



    • #3
      Good luck to you Jodii! I just want to clarify some of the info that Kara posted above. The ileal-anal pull through and Barnett's continent resevoir are for those who need to have part of the intestine removed, as are a few other ones mentioned. They are not for urinary diversions. Your surgeon will the best resource as to what he is comfortable doing and what will be the most appropriate for you and your body.I will tell you though that if you are concerned about your kidneys, then the internal pouch will be a good option as when they make it they put in these valves so that you will not have reflux into your kidneys. With the standard ileal conduit there is reflux- that is just the way it is constructed. When I had my ileal conduit I started to lose some of my kidney function due to the infections, but since I converted to my continent pouch I have had no further loss. You may want to discuss this with your surgeon.


      • #4
        Kara and Judith
        Thank you for the imput. i am meeting this weds. i was supposed to attend a support group tonight for people who have had there bladders removed. all of which are for different reasons. but i just couldn't go by myself. my husband is going to school and this was his final exam. so i will go in two more weeks. i know the life change will be the hardest for me. i am not scared to get the bladder out i want it out. i think of how these people say every 3 to 4 hours they drain it. wow that sounds like heaven. it seems funny to think that but, when your at the movies and the women in the other stall is still going and your all done and washing up all i can think of is wow i wish i could do that. i guess you never notice until your in the shoes. kara i wish you the best of luck with your surgery and i hope it goes well and your recovery is great. just think no more late night bathroom visits. all the money you save on toliet paper! sorry just trying to give a little humur in all our distress. anyway take care and i will let you know on weds what the final surgery is and when
        thanks again