Living with a Neobladder, please share your story.

6 years 6 days ago #54894 by pete172
Thanks Gary, I think I made the right choice and everything post op went well. It has been a long and trying year. All the best to you and thank you for your reply.
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6 years 6 days ago #54893 by garya773
Pete,

I am over 9 months out from my surgery. I was in the same boat as you are now when I was 5 months months out. I only recently started having good control during the day. I am able to walk, run, sit, stand and exercise. I have very little leakage. At night I wake up every four hours and drain my neobladder. There are nights when my waking up and my neobladder are not in sinc but it goes with the territory.My best advise is to keep doing the kegels they really do help. I know the aggravation of it but I can assure you it will come it just takes time. I still feel that getting the neobladder was the smart way to go. Best of Luck, Pete.
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6 years 6 days ago #54892 by pete172
so i'm 5 months out of surgery. i feel good and all went well, or according to plan. BUT the incontinence is making me crazy. i do the kegels every day. if i just set around and drain every hour, i'm ok. if i wait any longer it just leaks out. if i walk or move around, standing, i have no control. does anyone have any advice? thanks. and when i fall asleep forget about it...
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6 years 4 months ago - 6 years 4 months ago #54243 by nevadajeff
I am now 5 months out of surgery. You can read the specifics of my situation below in my longer post. I am very happy with the decision I made regarding getting the Neobladder versus an alternative. I am a very active 56 year old who works out regularly and spends most of his time outdoors skiing, scuba diving, backpacking etc. First thing you should know that the Neobladder is "work". I have had no complications which many others have mentioned on this forum which I attribute to finding the best facility to do the surgery (USC Keck) and being in good shape before and after surgery. I also think keeping very very hydrated helps especially with mucus plugging issues. I drink almost nothing but water and almost a gallon a day. Getting the feel for when it is full and dealing with continence issues is very difficult. I am 100% continent during the day. After my tubes were removed I was about 95% continent at night. Things have changed and I am now NOT continent at night. I have no problem during the day telling when I need to empty just like a normal bladder. The feeling of fullness is just in a different location. Emptying it completely just takes practice getting used to which muscles to push with. I can urinate standing up but find I empty better sitting down. Very depressing wetting the bed and waking up in a pool of urine lying on the semi absorbent sheet at night. I have tried the condom catheters and wearing both disposable and washable "diapers". None are comfortable after years of sleeping with nothing on. Many people have told me that during the first year things are constantly changing and you have your good days and bad days. That is definitely true. Another major issue is the removal of part of your intestine to make the Neobladder. It takes months for the digestive tract to begin operating normally again. Be prepared for constipation issues. For me, the stomach issues were actually worse than dealing with any Neobladder specific problems. So, bottom line is that I would definitely make the same Neobladder decision again especially if I was your age. At 5 months after the surgery my only remaining problem is my nighttime incontinence which I hope to get under control. Besides that, the Neobladder to me functions almost like my old bladder and I am cancer free!
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6 years 4 months ago #54242 by ericeaton719
Replied by ericeaton719 on topic Living with a Neobladder, please share your story.
I'm 29 years old and I have been diagnosed with bladder cancer I have gone through chemo and now waiting on the surgery but I haven't decided if I want to go with the neobladder or the bag. Can someone help me with some facts bout them both please and thank you
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6 years 7 months ago #53778 by baci2bear
You want a surgeon that has done this operation many times. This is a real specialty. I was fortunate in that my insurance, Ventura County Health Care, has some kind of association with UCLA. The Clark Urology center at UCLA is ranked #3 in the country for urology related operations. On the day before Thanksgiving in 2016 I had a piece of tumor removed from my bladder because I was peeing blood. It turned out to be an aggressive stage 3 tumor that had penetrated the muscle wall of the bladder. The Urologist who did the operation recommended that I have a radical cystectomy performed laparoscopically. Ventura County Medical Center does not do this operation, and they referred me to UCLA.
I had six weeks of pre-operative chemo, which I weathered quite well. My operation was on March 31st. They removed my bladder, prostate and surrounding lymph nodes. and made a neo-bladder with a piece of intestine. The following pathology report indicated they got all of the cancer. I was in the hospital at UCLA for a week and I was very impressed with the level of care. I only experienced minor pain, which is amazing, considering what they had done. I was home for about a week, when I felt very week. Home health care came to my house immediately, measured my blood pressure at 60/30, and sent me to the local hospital. I had acute renal failure - my kidneys stopped working. They put a drain in my abdomen and drained about 2 quarts of fluid - I am not kidding.
I went back home after about a week. I was very feeble for a couple of weeks, and that was a life changing experience. Old people who do not stay fit become feeble like this. They usually fall and suffer greatly from it. I swore I would stay fit from now on.
During my recovery, I lost 45 pounds. I had zero appetite and food hurt going down my trachea. I think it was because I was intubated for over eight hours during the neobladder surgery.
It is now four months since my surgery. I am 6'2", and went from 230 pounds to 180 pounds. My blood sugar dropped to where I am no longer diabetic. My blood pressure, with only Atenolol, a mild blood pressure medication, stays close to 120/80. I no longer have Sleep Apnea. My appetite is back 100%, but I eat to stay in the 180 pound range. As far as my commitment to stay fit, I have a workout on DVD that I use every day. I take a Pilates class twice a week. An I take my doggies to an off-leash park every day and walk four laps around the perimeter. I am in much better shape than before the operation. I am in physical therapy for incontinence. During the day, as long as I void every two hours or so, I stay fairly dry. Night is a different story. I tried getting up every two hours but this made me a zombie during the day. So now I get up every four hours. I often wake up with Depends soaked with five pound of urine, but I put absorbent pads with waterproof backings on my bed. I simply throw them out. The incontinence is a pain in the butt but it is not serious. I am grateful they removed all the Cancer.
My advice to anyone who is going to undergo this surgery is get in as good a shape as possible before the operation. No matter how far you have to travel, go to a surgeon that has done this surgery laparoscopically many times. And be patient with yourself during recovery. It takes quite a while, but you do get back to where you can do normal everyday activities again.

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