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.
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.
DX Jan 2006 - T1B G3
RC - Neobladder June 2006
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
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.
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 )
So I am 4 weeks out. Had my follow-up visit with surgeon 2 days ago they took some scans of the bladder injecting contrast into the bladder and showed no leakage. I had all tubes and stents removed (Whew that was an uncomfortable experience) It seems the stents did not want to come along willingly with the foley. Once out I had had a few more minutes of pain and then none.
All the pathology came back negative, cancer was only present as CIS inside bladder wall and had NOT even made it to muscle. That puts me in the 95-98% survival area. I'll take that for sure it only confirms that I made the right decision for me.
As for the reflux! It's all gone now. I don't take anything for it or for indigestion. My apetite has been slowly returning. I really enjoyed turkey, gravy, mashed potatoes and some stuffing on Thanksgiving.
Right now my biggest issue is to try and get the feel for controlling my new bladder. Since it's only been 2 days that I have had a chance to actually use it the jury is still out on that.
One more thing, I seem to have some wild fluctuations in day to day energy levels. The other day I could hardly get up from the chair and felt sleepy all the time. Not sure if this is related to getting all the drugs out of the system, trauma, or just trying to eat enough to get some more energy. I'm sure this will improve over time.