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Neo bladders in women

3 years 10 months ago #50036 by sparks
Greetings!

I am 61, active, and considering a Neo bladder. Are you still happy with yours? Able to travel as you indicated?

Your blog was so helpful in providing your sequence of experiences. I haven't found any testimonies with that much detail.

I loved your mention of the overseas squatty potty! Have you been able to squatty----or notty?!?!?

Shannon

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3 years 10 months ago #50035 by sara.anne
Don't have personal experience with radical cystectomy, BUT if I were going to do
it, USC-Keck would be my first choice! This seems to be one place where they are
successful with neobladders and women!!

Good luck to you!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 10 months ago #50033 by sparks
Greetings!

I am 61, active, and considering a Neo bladder. Are you still happy with yours? Able to travel as you indicated?

Your blog was so helpful in providing your sequence of experiences. I haven't found any testimonies with that much detail.

I loved your mention of the overseas squatty potty! Have you been able to squatty----or notty?!?!?

Shannon

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5 years 1 month ago #46869 by sara.anne
Thank you so much for posting your experience. I am sorry that you didn't at least get a welcome reply to your first post....I do remember it and was trying to find someone with experience (good) as a woman with a neobladder. They are few and far between.

If I remember correctly, you had your surgery at USC/Norris? They are really at the forefront of bladder cancer surgery and are definitely at the top of my personal list should I ever need that.

Your post will help many, I am sure. It is wonderful that techniques are advancing so that women CAN do this also!!

And yes, those "squat" toilets will be a challenge...I always KNOW I am going to fall in!

Best of luck for your continued recovery!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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5 years 1 month ago #46861 by GKLINE
Hello

I am sorry that you were not greeted at the door of this site when you first posted here. We usually have people at the door.
But seriously, welcome. I am not a woman so I did not respond initially as I can only attest to the male neo bladder. I have heard that women have had variable success with the neo

However, You are a shining example of successful female neo bladder installation. !
After reading your 2 posts, I am turning my "Model Patient" status over to you.
A Hysterectomy and a Bladder removal and neo bladder and out of the Hosp. in 3 days? You are indeed a superhero! Model Patient has a new Ruler! All Hail the new Queen.

I am glad you are doing so well and I wish you the best in the future.

Thank you for giving us such a complete story of your journey through recovery.
I am sure there are others reading this that can be helped by your positive journey.

Good Luck in the future and keep us in the loops as time goes by.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]
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5 years 1 month ago #46857 by Mirpurlady
Well, it's been about 6 weeks since I posted about neo-bladders in women, and not a person has responded, so I guess that means this isn't a burning topic for most people on this forum. However, for the few women out there who may be considering neo bladders, I thought I'd write a bit about my experiences in hopes it will help other women who are considering this surgery, and wondering what is involved in the adjustment.

I had my surgery about 7 weeks ago. It was normal abdominal surgery, not robotic. I had a catheter in for about 3 weeks after the surgery. This was not as uncomfortable as it sounds. Just inconvenient to always have to be dragging around this bag, either pinned to the underside of a skirt, velcro-ed to your leg under pants, or hanging over the side of your bed at night. It gives your new bladder time to heal before stressing it with a lot of urine.

When I got the catheter out - oh happy day, freedom! -- I was taught how to expel the urine and how to catheterize myself. Expelling the urine involves just relaxing the pelvic floor muscles as you normally would, but also pressing on your abdomen and leaning forward to completely empty the bladder pouch. It's not really difficult at all. (Though I'm wondering how this will work on squatty potties when I return overseas! Anyone had experience? Sounds a bit tricky.)

Learning how to catheterize myself was for two purposes: enabling myself to pee if I get "blocked up" and am unable to urinate, and to "irrigate" my bladder. I've never gotten blocked, so the former wasn't an issue. But for your bladder's health, you are encouraged to regularly "irrigate" it. This sounded rather daunting at first, but wasn't too bad. This was already being done after the surgery (initially every 4 hours!) by the nurses and then ourselves once I got out of the hospital. My angel of a husband helped with this task at home as long as I had my catheter in. It involves taking a large syringe (without the needle) and squirting water into the catheter pipe to go into your bladder, and then drawing the water out. This is to flush out strands of mucous that can gather in your new bladder. Remember, this bladder is made out of intestine, and it is used to constantly making mucous to do its job. Irrigation flushes the mucous out of your bladder so it doesn't get blocked. I was assured this mucous production would subside over time, and indeed I hardly see any mucous now when I irrigate - which is now only every few days. The nurses early on said I am fortunate that the mucous my body produces is quite thin strands for the most part, and probably for that reason I have never had problems with blockage. Some people do, but women less than men, as our urethra "pipe" is wider than men's, so it is easier to expel any mucous produced.

Once I got the "permanent" catheter out, I took over from my dear husband, and started catheterizing myself to irrigate. Not difficult at all, IF you have a mirror!! I found it impossible without one. The nurse said to try it over a toilet or on a bed. Neither worked well. On the toilet, without a mirror, I found the catheter wouldn't go in correctly, and then would come out and hit part of the toilet and get contaminated, so I had to start with a new catheter tube. On the bed, I sank down too much to get to where I needed to go. I found it worked best on the floor, sitting on a small towel, with all the things I needed around me. It takes 10 minutes max to irrigate and then wash the necessary paraphernalia.

Somewhere along the way, after I got my permanent catheter out, I got an infection (I wonder if that toilet was a likely culprit!) The infection came in the form of low-grade fevers, for which I was hospitalized twice (once when the fevers went high and I had a short "seizure". No fun. The doctors couldn't find a definite reason for the fevers, though one test showed I had some E. Coli bacteria present in my urine (another test didn't). Since after that incident my fevers stayed low and I didn't show other signs of E. Coli infection, we decided to let me fight off the infection on my own. Regular antibiotics hadn't cured me, and the E. Coli antibiotics can be quite toxic, so the doctors and I preferred to just let me fight it off by resting and eating well. It took me maybe 3 weeks, but now I'm doing MUCH better.

Speaking of eating well, you will find you have NO appetite after surgery, even when you are hungry! (Go figure!) There is something about messing with your intestine that takes away the appetite. Nothing looks good, and you have to force yourself to think of food as medicine and EAT, even if it is only a little! Many people lose 10-30 pounds. I found "Ensure" drinks, or their equivalent, were easy to get down and gave a lot of nourishment. Fruit shakes with protein powder were also good. Now, 7 weeks after surgery, my appetite is finally returning to normal.

My bladder is working well. I usually go 4 hours between urinating, and I haven't had much leakage to speak of. None during the days (except when I had high fevers), and only some at night initially. Adult diapers these days are so good, it can be hard to tell if you've used them or not! This last week or two I've stopped using them all together at night, with no problems. The nerve in your bladder that told you it is time to find a bathroom is gone. I set a timer on my iPod to go off every 4 hours, day and night, to remind me to go. I now can "feel" more when it is time to go. It is different than with a natural bladder - more like an ache across your abdomen. The doctors say I'll be able to gradually work my way up to longer times between urinating, but for now, every 4 hours isn't bad.

The doctors and nurses all say the KEY TO CONTROL OF YOUR BLADDER IS KEGEL EXERCISES!!! These strengthen your pelvic floor muscles, which control all eliminating. If you are planning on getting a neo bladder, start these exercises NOW!!! (Look on the internet for instructions). As my surgery happened quickly, I regrettably only heard about these exercises the day before. And you can't do the exercises during the 3 weeks after surgery when you have your "permanent" catheter in. So do them while you can! It can make all the difference to successful adjustment after your surgery! I had been taught to do these exercises after childbearing, so perhaps my pelvic floor muscles were already strong, and that is why I've been able to have a fairly easy adjustment. The doctors seemed pleasantly surprised I didn't have much problem with leakage, so I guess this isn't the norm. If you don't want leakage to be your problem, either, start your Kegels now! It is well worth it! The routine the nurses gave me after the catheter was out was to do the Kegels after each trip to the bathroom. Ten long Kegel holds of 10 seconds each, and then 10 quick Kegels. I hope that helps you have success, too!

All in all, I have been very pleased with my surgery and my new bladder. I still struggle with tiredness, and with mental sluggishness (probably a residue of the anesthetic. They say it takes one month to fully recover from every hour under anesthetic). But these things shall pass, and the important thing is my bladder feels almost normal now!!! Quite amazing what modern medicine can do! I'm so thankful to those doctors and to God that I am now cancer-free, and on the way to resuming my normal life again.

I hope this has been helpful to any women out there who are considering this surgery!
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