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Living with a Neobladder, please share your story.

2 years 1 month ago #55060 by nacras52
Hi I was diagnosed with stage 2 bladder cancer in 2009 and had to have a cystectomy. I was given a Neo-bladder and told to do kegal exercises to help with incontinence. It has been 8 years and I do not have to wear anything for incontinence. Every once in a while I will have a small amount leak but very little. I think the kegal excersises really helped. I too thank God every day and am still very active playing competitive handball racquetball and all kinds of other sports. Keep yourself as active as you can it helps a lot
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2 years 2 months ago #54984 by pete172
Hello All, bear with me, I guess I just need to talk. We blew out the candle last night {1}. It has been a year since my diagnosis. And last weeks visit to the doctor was all good, no sings of any new cancer. So lookout world. Monday will be 6 months with my neobladder and my pal INCONTINENCE. I know, you told me, be patient. I am and I try to keep smiling. It's just that I don't see any improvement. I'm exercising every day and feeling stronger. There were a lot of complications right from the get go and I thank God every day I open my eyes. I look forward to a long happy life with family and friends, spending my pension and social security. HAPPY EASTER / HAPPY PASSOVER GOD BLESS AND GOD BLESS OUR DOCTORS... Gary, if your out there, how are you doing?
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2 years 2 months ago #54981 by lotech35
That's true friend, but please don't get hung up on not having to lose body parts to live! Yes a lot has changed for me and I've lost more than just my bladder and prostate, and I look like I laid on a hand grenade! But too see my wife's face and the smiles of my children and grand children for a little while longer is all worth it. If I had to lose an arm or leg then I would do that too, we must continue to fight because it's not just for us it's for them too.

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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2 years 2 months ago #54974 by Sean T
What a horrible illness. Thank goodness there are paths to recovery. What I always tell people is that while bladder cancer is very treatable, often times that treatment requires the removal of body parts and that is so sad.

08/16/16 - TURBT - 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 rounds total - last March, 2018). As of latest cysto, Dec 10, 2019 - cancer free!
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2 years 2 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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2 years 2 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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