I want to echo everyone's good wishes and prayers. I have been out of touch with the group (my choosing) because I was scared of my pending TURBT. That was on Monday and my Uro found a small red area that he biopsied. He also found a new area that he removed. I will get the results next week. I was hoping that the BCG would have slowed things down. Well, maybe I'm being too pessimistic. Anyhow, I wanted to give you my best regards for your speedy recovery. You and Mike will now be our “go-to” men on neo-bladders. Best Wishes, Chuck
dx - Aug 2005
Five reoccurences (last 12/09 Ta high grade)
BCG Started 10/09 (2 6wk treatment)
BCG Maintenance started 4/10
65- 5 yr w/cancer BCG, Thiotepa, T3 CIS, RC-Neo-Bl
Thank you received: 0
9 years 10 months ago - 9 years 10 months ago#28878by rudyskier
Well, Greatings all I know my NBFF (Neo-Bladder Friend Forever) Mike has been keeping you all updated on my progress throughout the procedure. Thanks Mike.
I must say that was quite an ordeal! My surgery time was kicked back a little later in day when I went in. It didn' matter much to me though as I was not about to run out for last minute cheese burger.
I was surprised to find that I did not need to do any colon cleaning procedures other than to stop eating at least 12 hours before the op. I chose to stop eating around 5 pm the day before. No Fluids day of or anything (although they said I could have had black coffee up to few hours before.
Pre-Op and nursing staff were great at UCH. Doc Wilson also payed me two visits before hand this all set me mind at ease.
My great wife was able to stay with me all the time. Once on the trundle heading in I could not tell you a thing until I was rolled into my revovery room on the 9th floor. Had a great private room with pull out bed for my wife. The nursing staff were extremely attentive and continually checked on my status.
You Get NO rest in a hospital. For the first night and 2 days the pain button was my friend. On Friday night I decided to start weening myself off of the morphine.
I will continue the rest of this sometime tomorrow!
OK: I'm finally back. Today is Wed Nov 25 a full two weeks since the op.
Briefly, yes I did come home early, but that first night was awful. Lots of gas pain and very uncomfortable. That morning woke and went downstairs for breakfast. I could eat but not much, no apetite. That day I got up every couple hours and walked around the house. Hey not bad I thought. Later that evening I had much abdominal poin and cramping. Had a good deal of acid reflux which I never had before. after another terrible day I called the nurse and finally figured out that I had not been taking the pain pills I was given properly.
I waited until I had pain (says on the bottle take as needed for pain). Don't do that take the pain pills every four hours because YOU WILL HAVE PAIN. Once I got that figured out I concentrated on the reflux and eating.
I was also very bloated (basketball in my stomach). One afternoon I was standing in the kitchen and thought I felt some leaking I thought I did not replace the cord tight enough into the catheter after a flush.
When I opened my robe I found a tiny stream of fluid shooting straight out from where the JP drain was removed. It took a couple of hours and soaked through 2 towels. But boy did I feel better. (Not sure why they removed that so soon?
Over the next couple of days I felt both good and horrible. I got tired easy and often had the chiles.
Once I began to eat a little more regularly I had more energy and often felt better but still had issues with bowel movements.
I think now after two weeks I've got it figured out and here is what I suggest for anyone heading into this:
Always ask or call the nurse before taking anything I suggest here as you may have different interactions with things than me. I really had no other health issues than the Bladder Cancer
1. Assume you will have Pain, ask for best prescription and enough of it from your Doc before leaving the hospital.
2. Take the pain meds regularly and stay ahead of the pain.
3. Ask about fluid drainage and build-up
4. Ask about bloating, acid reflux and what you may take to prevent it. I took Pepcid two times a day, it seemed to work.
5. Ask about a Stool softener. start taking it as soon as you get home even if you have had a bowel movement without it. If you end up not needing it then great. But it was sure a lot more comfortable for me after taking it.
6.Waking up every four hours at night is not fun, So get on a regular schedule like Flushing and pain med at 11pm, 3AM and 7AM then make sure you sync it the same way during the day and stick to it.
That's all for now.. I am looking forward to a nice Turkey Dinner tomorrow...
Last edit: 9 years 10 months ago by rudyskier. Reason: Continued story
Gee - my RC was 13 hours long and they offered to let me out at the 7 day point but my wife and I felt one more day was needed and thats what I did. On my second Turbt, they let me out too soon and I had to go back through the ER so we were not taking any chances