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Living with a Neobladder, please share your story.

1 year 5 months ago #55513 by pete172
Thank You Jeff and Tayls. How long did it take before you had control during the day? Is there something I'm not doing? This week will be 9 months, and I can deal with getting up every 2 hours at night and wearing pads, even the sleep deprivation, at least I think I am. It's during the day when I'm trying to get things done, sometimes it brings out that other side of me as the day goes on. {Witch I try not to show} Intimacy is a whole other issue, the doctor says it will take about a year? Stay Well All, It's a beautiful world and we're here.

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1 year 5 months ago #55497 by nevadajeff
Thanks for your post. My Frankenbladder just had his 1 year anniversary. My experience is similar to yours. At least my friends who are cancer survivors can put it behind them at some point. Being reminded every two hours by my timer going off of my cancer can be depressing. I am continent during the day but battle the same way you do. At night I am incontinent unless I want to wake up every 2 hours. I have found condom catheters to be a God send. They are comfortable and allow a full nights sleep. You just need to get the right width and length and material. Takes a little experimentation. I use the Conveen Optima brand. 30mm short length. If your surgery caused penis retraction definitely get the short length. I use a 4000ml bag with it and get a full restful nights sleep. It took about a month before my body adjusted to just peeing in my sleep without waking up. On long road trips I will use the condom catheter with a leg bag. Not having to stop for bathroom breaks is great. Overall I am very happy with my neobladder. No need to ever catherize. "Frank" has his good days and bad days and seems to have a mind of his own. These days seem to revolve around being too easy or too difficult to pee. I use homeopathic type remedies and lots of water to avoid UTIs. That has been very successful. I too have noticed that staying active and keeping my weight in a healthy range really seems to help things. Happy to be alive and cancer free (last 9 month CT urogram) !
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1 year 5 months ago - 1 year 5 months ago #55488 by Tayls666
Hi all. I just stumbled across this site so thought I’d add my story. I had neo bladder surgery 4 & half years ago now and I’m still on the right side of the dirt. I spent 2 weeks in hospital after surgery, lost 13kgs in that time and pushed myself to get back to work inside 6 weeks, which in hindsite was to quick and it quickly took its toll physically & mentally. My surgeons told me & my wife to be mindful of signs of depression as this can be common after major surgeries. Being a typical Aussie male, my reaction was “she’ll be right mate, I’ll be fine” but about a year and half ago, my wife, my GP of many years and myself, realized I had been in the dark recesses of depression for more than a year....I just hid it well but one day I just couldn’t hide it anymore. There were several contributing factors but without doubt, being diagnosed with bladder cancer and the dramatic changes that followed were and still are the major factors. Don’t get me wrong, when I’m not in those dark places, I am truly grateful that I am a survivor and can watch my 4 children’s achievements. But, battling continence issues not just daily but hourly everyday, setting my alarm to wake me every 2 hours during the nite (I still have to wear a pad during the nite for those accidents that do happen), and other associated issues have been a real mental drain. Due to the adhesions to my bowel during the bowel part of the surgery, my motions have either been diahorea often or constipation, which eventually caused an incisional hernia so I am no longer able to do Ab or core muscle excersises. I can say however that I am one of the lucky ones in as far as having 100% intimate functionality so there is always a bright side somewhere. One thing I realized very quickly that if you put on extra weight, it DOES effect your continence as it puts more pressure on your new smaller bladder. I’m 61yo and am on the road all day in sales and even though I have control during the day, I’m looking for public toilets all day which can be very taxing mentally & physically. Anyway, that’s my story in a nutshell.
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1 year 5 months ago #55486 by pete172
Hello All, 8 plus months and very little improvement with continence. If i'm just sitting around, I can hold 250 - 300 cc max, but once I stand, I have to get to the toilet, if not gravity takes over and out it comes. Absolutely no control when walking or exercising. The doctor is suggesting a sphincter implant with a button, witch would be another surgery. I'm saying lets what an see. Did anyone take this long? Does anyone have any advice? God Bless and Thank You.

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1 year 7 months ago #55225 by pete172
Hello All, today is 7 months with my neobladder. The good, I feel great, exercising every day and doing a lot of walking. Still cauterizing once a week, for irrigation. And still passing a good amount of mucus. The not so good... I still don't have control. I'm doing the kegals every day and as often as I can think about it, even when I'm walking. Does anyone have any advice, or the same experiences. Somebody tell me it's going to get better. God Bless.

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1 year 7 months ago #55123 by uyoeli
Four months after surgery, my experience with the Neobladder has been extremely positive. First month after surgery you are with a bag, so I can compare - Neobladder is so much better - now I look and feel completely normal, as if nothing happened. The main concern with a neobladder is continence; I was in full control during the day in about a week. I am a light sleeper, so whenever I wake up at night (which can be 5-6 times), I just go to the bathroom to play it safe. At least in my case, the neobladder is all positives with no negatives.

While I was warned before the surgery that incontinence can last for many months, the first visit with the WOCN department at MD Anderson (Wound Ostomy Continence Nurses) the story sounded very different: they said first week hold for 2 hours in the day and 3 at night, the following week hold for 3 hours in the day and 4 at night, and within a month they expected me to have full control. I am in no position to know what is "normal", but I suspect that for the majority of us, incontinence is overcome (with a few accidents here and there) in a matter of a few months. Again, while I am not expert, it seems to me the problem is similar to when just the prostate is removed, and no one suggests an external bag following prostate removal.

While everyone is different, based on my experience I highly recommend having a neobladder, MD Anderson, and Dr. Kamat

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