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10 years 7 months ago #28972 by LeeH
I guess you never stop learning. So it appears that the acid reflux is part of this? I'm a year and a half into my RC and it sure would have been nice to know that instead of needless discomfort (urrrrp :S )

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10 years 7 months ago #28963 by Patricia
Sorry you're so much on your own Rudy. I happened to be at a top urological hospital and thier protocol on discharge was very exact.
i was given a script for Nexium to take for 6 weeks..thats it..no longer.....but they obviously knew about the reflux.
I also had a script for phenergren for nausea....guess they knew that might happen also..and it did...but subsided eventually.
Also a script for stool softener whether i thought i needed it or not. I did!
I specifically had only stoma nurses come care for me.
I was given pain meds but really didn't need them. The only time i had pain was when i had to go to the bathroom..i actually would sit there and cry. I had one angry intestine.
Hope you improve one day at a time. It does get easier.
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10 years 7 months ago #28962 by cljjlk

How goes it these days. Hopefully things are getting better each day and the level of frustration is lowering. You are in my prayers. I know that it could very well be someday I have to face your challenges. I can only hope I will be as strong and have as much of a positive attitude. Keep the faith and God's blessings. Chuck :)

dx - Aug 2005
Five reoccurences (last 12/09 Ta high grade)
BCG Started 10/09 (2 6wk treatment)
BCG Maintenance started 4/10
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10 years 7 months ago #28927 by kcnorthstar
The problem with recovering at home is the doctors never seem to give enough information. Its almost like you have to figure out a lot of it yourself. Our insurance company paid for home visits from a nurse. That made me feel a little more comfortable, at least until her first visit. She took my vital signs and then said she wanted to check my stoma. I said I didnt have a stoma, I had a neobladder and she asked whats that? I had to explain to her what a neobladder was. When she left she said "thanks, I've learned alot today". We called the insurance company and told them we didnt need any more nurse visits.


Age 59
DX Jan 2006 - T1B G3
RC - Neobladder June 2006
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10 years 7 months ago #28926 by rudyskier
:cheer: Thanks George, Yes the recovery is tough but I still would rather be home and deal with it than in the hopsital. I do think that there could be a little more info out there on how to deal with this. I know everyone is different but generally there a many things little tricks that help like I kept some small lolli-pops next to my bedside so that I could suck on them during the night. It helped keep the hair off the teeth and seemed to help somewhat with the acid reflux.

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10 years 7 months ago #28925 by GKLINE
Rudy, you are the man. Glad to have you back. You seem to have found the same thing I did when I came home.
I was a Model patient when I was at the hospital. But, then I came home and had to live with the recovery. I am with you, the routine you are forced to develop after hospital is actually More important toward your recovery than you would expect.

Keep up the good work, we're all proud of you


Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]
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