Neobladder or ostomy bag for a phisically active person?

Hi Cupofcoffee and welcome to the group. Good to know you are here in support of your uncle. I had chemo with no real problems but not cystectomy, so not the best to help. We have members here with both options and I am sure will be along to help when they pick up your post. Best wishes.

Morning Cupocoffee, like your name ,I’m in the middle of mine right now. There won’ be any one , hopefully , who has  experience with both diversions , but I can give you my take on neobladders. Mine is 5 years old now and it’s hard for me to come up with a real negative about it. I too am a very physical man, I’m in construction ( residential renovations ) and am working very physically every day. When I’m not working or chillin’ , I’m working out at the gym, swimming lengths, waterskiing at my cottage , snow skiing ….. , you get he picture. I’m 71 and thank god very day that they invented this contraption. Yes , it does take some time to get use to the new sensations that warn you of the need to go, and in the first year , after a physical day you may sleep through the call to duty and leak. That happens to me now,  4 or 5 times a year. I wear a pull-up diaper, ( I prefer to refer to it as a stylish under garment.)  Until you train your new bladder (3 months approx. ) you may have the occasional daytime squirt but those have not happened to me in more than 4 years. You have to be more aware of bathroom proximities , as sitting down to pee is by far the best way to void and fully empty you bladder. Being a farmer , I’m sure that the nearest bush or heck , wherever, has always been your friend . In a pinch , standing will release the pressure but not a good practice not to completely empty. Day and night I usually void every 4 hours, more when I’m pounding back the coffee or the pints. Some neo folks have occasional infections ( most likely from insufficiently emptying ) but I have not had one. I did have a few bladder bleeds ( I’m on blood thinners) from trauma, once from doing too many sit-ups with a full bladder and the other from a 2x4 to the gut. This would not manifest this way if not for the meds but I have to be aware of the possibilities. If your uncle is a strong physical guy , he should breeze through this hiccup and continue to do the same things as he has always done. The impotence thing will occur , in most cases, regardless of which diversion he goes with . I wish him well and there are many good helpful people on this forum, so don’t be shy. Orillia

I'm female & have neo. Not as active as Orillia (probably shames many of us!) but certainly no problems with dance, gardening etc. With either urinary diversion & appropriate precautions, physically demanding activities will be possible. For simplest & quickest back to work, I'm tempted to say stoma possibly better - also easy to empty the bag outdoors. Neo must be emptied strictly to time at first & then as needed until well trained, but during this time of recovery, he would probably not be out working anyway. What will be important is not to rush back to everything too quickly, but to gradually build up activities again at the speed the body dictates. Best wishes.

If I was faced with this decision ( I wasn’t because I knew that me and a stoma would be an impossible match) I think that I ‘d be asking for a loaner , fill it with water , strap it on , try and replicate the real thing, go to work with it on during the chemo period and see how many times you burst it wrestlin ‘ a calf. The decision may be made for you during the RC based on the condition of the urethra but barring that you want your decision to be the right one for you. I was back at work 3 weeks after my RC ( albeit lighter duty ) with a leg bag and catheter and I knew that my lifestyle and a bag would never work. So needless to say , you know the first thing I grabbed for when I came out of the anesthetic. Orillia.

I would just add that I think Orillia is exceptional in his fitness & recovery. My surgeon told me 3 months off work & I needed all of that, although I had resumed household & leisure activities before that. It's usually at least 6 weeks before being allowed to drive. 

I wish I could have recovered as quickly as Orillia.I returned to caring full time for mum 8 months after cystectomy but it was hard.The stoma wasn’t a problem it was the bending involved.I felt so nauseous pushing mum’s wheelchair and bending over to do tasks.I do wonder how much the hysterectomy plays a part in women’s recovery from cystectomy.I appreciate it would have taken me much longer to recover as I was so Ill at the time of the surgery.My urologist said afterwards I was close to being inoperable.

Morning Winkers and Teasswill, my surgeon was a bit surprised by my recovery as well. He put it down to “residual “ fitness due to occupation and lifestyle. I did not need chemo and I’m sure if I had , it would have been much tougher for me . I was also in the middle of a big project when  my surgery was rushed forward so I really felt the need to get back in the saddle.All I can suggest is that people try and do some preliminary fitness work. Orillia.

Hi Orillia,I agree building up fitness beforehand is important.Unfortunately that didn’t happen for me.The cancer was so aggressive and advanced by the time it came to surgery that my physical health had really suffered as a result.I picked up a particularly resistant hospital aquired urine infection following a TURBT and that made matters worse.I had been caring full time for my disabled mother which was physically demanding and I felt so ill.In the end I just couldn’t manage and I had to put mum into respite care.I never had chemo or radiotherapy.It’s so good that you recovered quickly and were able to get back to work.I was back doing gentle gardening after about 3 months but it was 8 months before I was able to resume caring for mum.Even then I had to have help.Best wishes Jane 

My surgery for neo bladder was 4 weeks ago today. This followed chemotherapy so my body was already knocked. I’m home recovering and every day I get stronger, even managed to put washing on today surrounded by my young grandchildren. a friend of mine was one of the first to have neo bladder 8 years ago. He is my inspiration, there is nothing he can’t do!! I wish your uncle well and he will make the right choice for him. Tell him to do his research, I actually changed my mind on which procedure to have when I had all the knowledge available. I will update in a couple of weeks so you can read how much progress I’ve made.

Good to hear you are getting stronger.Best wishes for your recovery.Jane