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Living with a Neobladder, please share your story.

1 year 8 months ago #54946 by lotech35
Hello my friend!
Wish things were different for you but we will make the best of it!
I went with the Indiana pouche, an internal bag made of colon and small intestine. I chose this because its pretty much safe as far as continence and release. Since you have to use a catheter to void. Originally i was going for the neobladder but the learning curve and possible catheterising my privates scared me off. At most i cath twice a nite depending on liquid intake 3 times during the day again depends on fluid intake. Im totally fine with my urostomy and would do it again if needed.

Diagnosed Sept 2015 noninvasive
1st turbt Oct 3 2015, 2nd turbt Nov 13 bladder,
Completed 6 BCG initial treatments 01/11/16 02/09/16 No Cancer!
08/09/16 Cyto shows red spots on bladder, TURBT prostate scheduled
09/12/16 Cancer is back Ta prostate ,T1 high grade bladder papillary uthelial....

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1 year 8 months ago #54895 by ktmiller11
I started this thread about 9 months ago, during this time allot has happened. I completed 12 treatments of chemo and underwent radical cystectomy in July 2017. I had a fabulous doctor and team in Germany, he insisted that I stay in the hospital for a minimum of 21 days after the surgery. He did not want to send me home with a catheter, his goal was to send me home totally tube free. The surgery was a success, the long hospital stay was rough. In the end, I was very thankful that the Dr insisted on the long stay and I was able to go home without any tubes. Recovery went very well as I was closely monitored throughout my stay. I had very little pain, the only discomfort was the 9 tubes sticking out of me and gas pains. All but 3 tubes were removed after 14 days, the other three were removed a few days later. The last few days in the hospital were called bladder training. Upon returning home I was incontinent for a couple of weeks and then I started having more control, within a month I was at 100 control during the day. Nighttime is a different story, it depends on how much liquid that I drink after 8 PM. If I watch what I drink and drain my bladder before going to bed, I have little to no issues. I also lost about 40 lbs in one month after I left the hospital. I am not fit or active, I was overweight, and my experience was mostly positive. The biggest problem I encountered was my digestive tract for a few months I was either constipated or had diarrhea. There was no in between, work and travelling were challenging. My diet had to be adjusted, the food I always enjoyed with no issues was now causing problems. After about 3 months, I figured out what I could eat and all returned to normal.

When I first started this thread I was scared and very concerned about the upcoming chemo treatments and surgery. Nine months later I am in great health and I am thankful I completed the surgery. The latest scan shows that there is no cancer anywhere in my body and I believe I am better for the experience. I can urinate standing up, I am 100% continent during the day, and life has returned to normal. I can do any activity I want, I am not restricted in any way. My faith has also grown through the ordeal.
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1 year 8 months 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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1 year 9 months ago #54893 by garya773

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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1 year 9 months 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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2 years 1 month ago - 2 years 1 month 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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