Female RC & NeoBladder Incontinence...still

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Tue, 02 Sep 2008 05:04:08 +0100

75 year old female Have an atrofied bladder very painful and considering neobladder surgery at Vanderbilt Medical Center Nashville. Seems all the bloggs are mostly negative or barely tollerable. If cancer of the bladder possibly no alternative but mine is not cancerous and I am not incontinent just survive on pain killers. Are there any testimonials of positive results for neobladder surgery? HELP Thanks Bwee - Bwee

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Thu, 20 Mar 2008 16:38:10 +0100

Hi JoMama,
Unbelievable!! I am a 39 year old who also had neobladder surgery in Houston on January 2nd, 2008. I have a different set of circumstances than most on this site, but this is the only site I have been able to find with women who have had their bladders removed. I had a hysterectomy in 7/05 and was diagnosed 2 weeks later with silver dollar sized (HUGE)Fistula bewteen my bladder and vagina. I had 6 surgeries in 2 years and in October of 07 it was determined that my bladder had been damaged beyond repair and would have to be removed :( My surgery was 12.5 hours long and I went immediately to ICU. While in ICU I stopped breathing and was put on a respirator and was unconscious for about 6-7 days. This complication was due to the amount of blood loss and pain medication and my body unable to sustain it. From there I went to a regular room and began this very long road. 2 Weeks after being home I got the flu for 10 days and 2 weeks after that I got Staph and another much more dangerous infection call Psydomonus ???. I was hospitalized for a week and while in the hospital my last catherter was removed. I was immediately incontinent, but chalked it up to just being weak and really sick. It has now been a month since the infections and the incontinece still persists just as bad as in the beginning. I am so frustrated and discouraged. Everyone tells me to just be patient and that it has not been very long and I was very very sick and nearly died, so I try, but some days it just gets the best of me. I have been wearing Depends for the better part of 21/2 years and am so sick of it. I have an 8 year old and a 13 year old and trying to keep up with them at the moment is really tough. I am still SOOOOOOO tired all the time, but I keep going. It has been really hard because until yesterday when a friend found this site I thought I was all alone. Please respond and maybe we can bounce our frustrations off each other.

Bionic Bladder - bionic bladder

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Thu, 13 Mar 2008 23:21:02 +0100

Hi,

I would like to give a 1 yr female neobladder opinion/experience....After RC in 3/07 I did 4 months chemo starting 5th week out of surgery - thus I did not get good continence until August.By Dec I started experience hydronephrosis and hypercontinence. As of now I have to intermittently cath 3 times daily. Those are the facts...
My feelings are mixed. My neo works fairly well, but I am not fond of cathing where I cannot see. As of right now - I sometimes regret not having further researched better the path of a pouch. Keep in mind this may be a temporary thing in which case I may love my neo again,God Bless, Holly - mznoregrets

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Thu, 13 Mar 2008 22:59:42 +0100

Pat, I don't want to hijack Jo mama's post, so sent you a PM.

Sorry JoMama you are amazing, let me know how you are doing as I am due surgery June and am possibly going for the neo bladder option. Maria xx
- Maria

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Thu, 13 Mar 2008 21:18:17 +0100

Maria..you're right...the HIPPA laws were not in effect in 2002 and it was not a problem to get names and numbers....though at Memorial they had people call me..only problem was they were all men which didn't help at all...Dr. Stein actually gave me a call list. I suppose you could ask the doctor to have his female patients that he's done a neo on to call you...that would work i think. In the meantime keep track of all the females with neobladders on this site and communicate with them..there are a few but very few stick around long term. I wish there was a way to keep track. Maybe Cynthia or Wendy have some stats?
Really it all boils down to what you can be comfortable with.
Hope you have found a facility thats a bit more dedicated to infusions...how is that going? I saw where Shands just got a bad rap for exactly that.
Pat - Patricia

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Thu, 13 Mar 2008 20:52:34 +0100

Pat, I will ask my surgeon for more specifics on his theory when I see him in June. He is a very respected surgeon so I would not knock his theory until we know his reasoning behind this.
I don't know how you manage to get lists of women to talk to who have had the neo surgery. Hospitals in Fl will not release any information due to HIPPA laws.
Therefore, how did you actually word your request? it may be that I am not communicating my request clearly!
thanks - Maria

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Wed, 12 Mar 2008 23:29:40 +0100

Maria...i can't imagine why being thin makes a difference....I'm like 123 lbs and 5' 8"...but i'm sure there is no difference in the length of the urethra in a thin or a heavy female. I certainly wanted the neobladder as it seemed the most "normal" to me but i could not get a successful list of female patients from any of the surgeons i saw......Dr. Herr could not give me one....Dr. Stein gave me a list of l3 women of which i called them all...only one of the l3 was not having problems.....so i would advise you to ask your surgeon for a list of successful females he's done with the neobladder and call them..and if you don't mind having to cath like Betsy Mae go for it.....its a start.
Pat - Patricia

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Wed, 12 Mar 2008 23:17:48 +0100

For 4 months I have been trying to decide what would be best for me: neo bladder ........which my surgeon (M D Anderson trained) thinks is best choice because I am "thin" or the pouch. Still can't decide the negatives and positives about both options still confuse and overwhelm me. I still have a couple of months to decide ??? - Maria

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Mon, 10 Mar 2008 13:30:15 +0100

Sorry if it sounded like a rant but I have read a lot of negative comments about hypercontinence. I would be more than happy to help other women and talk through some of the issues with this outcome. Direct them to me! - Betsy Mae

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Sun, 09 Mar 2008 15:53:19 +0100

Its not that anyone is being negative about hypercontinence ..its just a fact that it happens with females a lot with the neobladder...and there are choices...there's the external pouch and there is the Indiana Pouch or version thereof which at least allows you to cath in an area a women can actually see. It all boils down to choice....and being informed ahead of time so you can make a decision that you can be comfortable with. Almost everyone becomes comfortable with their choice in due time if they are given one by the surgeon...many surgeons do not give a choice...and many patients are not informed. If you're happy Great...help some of the other ladies who are having a problem with leakage and infections and hypercontinence and are having trouble cathing. Pat
- Patricia

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Sun, 09 Mar 2008 07:40:13 +0100

Please!!!!!!!!!!What is evveryone's issue with hypercontinence? I have it following my neobladder surgery last August and although initially I was horrified with the thought of having to cath every time I needed to go I can now honestly say that it is an easy part of my life. I am no longer ruled by a weak bladder. I have spent my life worrying about needing the loo and now I have the confidence of going every 4-5 hours and often longer without leaking. It really is not a problem. Please try and be a bit more positive for those of us who have no choice! - Betsy Mae

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Sat, 08 Mar 2008 23:36:06 +0100

Hi Jo...well it is a little early to expect continence but it might be a good idea to tell your doctor as they actually can do some bio-feedback testing to make sure you are using the right muscles...actually its an anal probe....isn't that just to exciting?! I hope some of the other gals with a neo will pipe in here for some hints for you.......Pat - Patricia

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Sat, 08 Mar 2008 20:11:39 +0100

Hi Pat,
I know about the hyper-continence and thank God that's not my issue. I suppose I'm being impatient about getting rid of these diapers which I currently HAVE to wear 24 hours a day. Perhaps I should just keep practicing but I'm not able to stretch the bladder if it just pours out everytime I move.
Thank you Pat for the encouragment and shot of commmon sense - I should be thanking God I'm 99% cancer free instead of gripping about incontinence diapers.
Jo - JoMama

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Thu, 06 Mar 2008 20:21:00 +0100

Why are you pinching it off....isn't the idea to get it all out? Every woman i know with a neobladder has a different way of getting a flow going and if yours is reaching for a magazine or remote then stick with it. Actually its possible to overdo the kegals. Did they give you a schedule for the kegals or for emptying for that matter? The last thing you need is hypercontinence and you will need to cath...it happens frequently with women and neobladders. We have a shorter urethra...it just doesn't work as well as with the men...don't suppose your surgeon told you that. Are there any stoma nurses where you had your surgery that you can talk to? Pat - Patricia