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Working neobladders in women

12 years 4 months ago #5250 by mznoregrets
Hi Melodie ,

  This is MZ- Holly... :) Just  wanted to let you know how I feel about my neobladder...

    My thoughts bounced between the Indiana and the neobladder however - and I had a high grade variant making it aggressive and was a stage T2a when found. I didn't wait to RC and diversion surgery long. At RC it was stage 3a so I did right I think with chemo after. I have read some that they feel chemo prior to surgery is promising so I am glad you are not rushed to choose.

   Iwas really worried about continence and having to self cath. It is true - with the neobladder there is a risk of having to self cath. My surgeon - Dr Micheal Blute out of Mayo's Rochester, MN - has been a pioneer in neobladders for men and then women. I was assured of a high sucess rate and he made me confident my chances of not having to cath would be good ANd that my chances of achieving continence would also be high.
  The Indiana pouch looked like a viable option primarily becuase self cathing on the belly seemed less scary and continence was not an issue. I did worry about my self image changing tho. I just married in Dec 06 and was dx'd in 1/07 - my husband was supportive whatever my choice would be.

  My RC neobladder went in on 3/13/07. The procedure was done robotics and took 4 hours ( I had already had a hysterectomy in 04) After 8 days I went home only to get a c diff infection for 3 weeks which slowed my training the new bladder among other things. My cath came out on 4/9 and I became tubeless :) I basically have had a week between the last c diff infection and my 1st chemo  - not much time to train it ( Cisplatin is given with lots of diuretics and I was going thru plenty of Good Nights that week). I can go 3 hours usually during the day between pees, sometimes as long as at night. I do wear the pull ups mainly because the chemo has made incontinence a current issue. I am confidnt that this will pass and continence will be achieved. I am at peace with my choice.

  Hope this has helped somehow - my recovery has been complicated, yet I feel like the goal will be obtained. Best of luck to you - Holly

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12 years 4 months ago #5247 by Patricia
Melodie......the stoma nurses trained me to use the cath in the hospital and i admit at first i was afraid i'd puncture my bladder or some alful thing...they just laughed at me and said "Well you'll be the first to do that!"...I did find that having 2 different kinds of caths is a good idea...sometimes the softer, clear one is easier to insert. I have a latex allergy so the caths they gave me in the hospital a little more rigid. And my doctor prescribed enough catheters for me so i would never have to re-use one...i know i've read about the washing , etc....but if you don't have to do it ..i say Why do it. My insurance covers everything but 20%. They even say on the package as they are individually wrapped "Do not reuse"....I have a prescription even for the surgilube and the saline solution. At first you get a lot of muucus and have to irrigate with about 30cc's of solution once a day or so in the beginning...then its once a month...and now 4 yrs out i hardly do it at all as i have very little muucus and it has no trouble passing. There's a little bit of a learning curve but its no big deal and its certainly easier to reach than trying to cath in the lower extremities without a mirror!! And that particular area for me is unbelievably sensitive. You have to train the bladder with either direction you go...at first you cath every 2 l/2 hrs....you get a little sleep deprived...the next week 3 l/2 hrs and then to 4 hrs. That didn't take me long...i still go 4 hrs during the day but for some reason my bladder leaves me alone at night for 6 to 8 hrs. I don't drink a lot at night either. You will get a squeezing sensation that will signal you not much different than if you had the bladder where it used to be. Now if you drink tons of water which the nurses will tell you to do you'll go more...it drove me nuts in the hospital .. the doctor asked me how much i was drinking and i told him 8 8oz of water a day..and he said...Stop doing that.....I loved it...he said drink what you've always drunk...best advise i got. Which ever surgery you decide on you'll have a bazilllion tubes hanging out of you after surgery and for about l0 days after....but that goes away....the pain goes away...you'll become very comfortable with your new apparatus and personally i kind of like where it is now...really easy to get to...no squatting above dirty toilets...and if you get in trouble on a long car trip take a mayonaisse jar with you!!!!!! The new pouch empties about the same as a bladder does. I stick a couple of caths in my purse, some packets of surgilube and some of those wet wipes if i'm out for extended periods and now i just use a bandaid to cover my stoma. Hope that answers some of your questions.
One of the reasons the neo-bladder doesn't work as well in women is that we have shorter urethras than men and even the top surgeons in this field can tell you the statistics on neobladders with women. But hey i've seen success stories...i guess i'd find out from the forum here who is a success and ask them who their doctor was...then interview with them. Pat

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12 years 4 months ago #5246 by Melodie
Marrigotti,
Thanks for your response and details....am surprised to find it was six weeks before you were using the catheter.....I thought that happened when one left the hosptial......obviously there must be something that stays in place and one has to return soon after.....what goes on up to that time ?....maybe I should try to ring you up.....that being the case, it sounds like it must be a good eight weeks before someone can return to work.

Given my plan was to return to work and my commute is 50 miles, I am wondering if there is any discomfort say after 8 or 10 weeks in regard to traveling. Prior to being diagnosed, I was having lots of discomfort whenver I had to ride in a car or even while driving myself. I am wondering if pouch owners are able to do very active sports that involve any jarring movements....like four wheeling or horse back riding.

Anyway, thanks for sharing info. My hubby thinks I am too much of a whimp to deal with these kinds of changes that surgery results in and I won't argue that point with him. I am a whimp....which is why I was aiming for the neobladder, something that would most closely resemble my life as I know it. He has been very surprised with all that I have already gone through and is amazed I am doing chemo. The second session was very hard on me but I don't feel like I can just do "nothing" and hope it will go away. Today I was suppose to go in for more but my white cell count is too low and they gave me a shot so I would improve by Weds. Anyway, thanks for saring and bless you for listening....

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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12 years 4 months ago #5243 by Mike
I, too, am a happy pouch person. I commenced using the pouch about six weeks after surgery. Twice, in the beginning, I had a problem inserting it at the right angle, but, after a tutorial by my doctor, never after. I, too, sleep all night (7-8 hours). I am still using my original catheter. I don't irrigate, I just wash it with soap and water after each use. I would say it takes one or two minutes to empty it, depending upon how long you have waited. I have never had an infection. I have no real complaints. Even though I had wanted a neobladder, I'm glad I did not get it, because of continence issues. Also, I understand that if one is hypercontinent, one has to self cath anyway. I have a close friend who has the pouch and, she, too is very happy.

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12 years 4 months ago #5242 by Melodie
Pat,
Thank you so much for your response. I like the adjective "happy" Indiana Pouch person. Your comments give me hope. I would like to know, how long it took you to learn and become comfortable with the process of emptying the bladder using the catheter. I have also heard that those need to be "boiled" every night whiile something else I read said "wash with soap" and water. I would like to know how much time is spent on daily maintenance of the equipment. How long does it take to empty it? I really like the idea that you can sleep through the night....but could be you only sleep 5 or 6 hours. How long have you had yours?

Additional info. would be most helpful to me. If you have read my last reply to Wendy, you can see I am undecided about the neobladder and only want that if it can afford me the quality of life I am after.

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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12 years 4 months ago #5241 by Melodie
Wendy,

Thank you so much for the info....what a blessing you are and this website.

You won't believe this but Dr. Paul Lange is the doctor I had selected to do the surgery. I did know that he is very experienced, however, when I saw him in late March, he inidicated that he feels the quality of life for women is better with an Indian Pouch than with a neobladder....due to the incontenence factor. This gave me the impression that he would not do a neobladder for me. I did ask him if he could do a partial and he said he would not. I have delayed in calling him to ask if he would do a neobladder for me because I wanted to know how effective they are for women already using them. You can see, I don't necessarily believe everything I am told. And I trust those who have "been there and done that" more than I do the medical profession. I still don't feel I have enough information to make a good decision. I want what can provide me with the best quality of life and if a neobladder means wearing depends every day as well as other possible issues, well, perhaps the Inidian Pouch is a better choice. Thanks again or the input and for being such a great "listener" to my concerns.

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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