I never thought about bags for the drains. That would be hard walking around with.
"There are also different shaped neobladders. Mine is a "W" shape, the ureters entering at each vertices of the "W" and the urethra connected to the bottom of one of its "v"s. I think this is pretty common. "
Nope never known about this I thought it was shaped like a hot dog with the 3 tubes. Thanks for sharing your operation and recovery with me. I'll know what to expect.
Here's my tube list yours may differ. I had one urethral catheter, 2 small drains draining each ureter that went into the right side of my abdomen (draining to two bags), 2 drains draining fluid from the wound site that entered on the left side of my abdomen (draining to two bags), a tube in my neck doing god knows what, a venflon in the back of the hand, a further tube in the arm and then an epidural (in the spine) for the days after the surgery. I found the epidural a great choice for me and didn't make me too groggy. They offered me this or a morphine pump. But I thought the morphine was too much and it's made me very constipated in the past which I thought would be bad for my post surgery bowel condition.
It sounds like a lot of bags, Jeff, but day by day they come out which is a good mark of progress, not too uncomfortable and by the time you get home, depending on your surgery, only one or possible two remain. In my case I went home with only a urethral catheter.
There are also different shaped neobladders. Mine is a "W" shape, the ureters entering at each vertices of the "W" and the urethra connected to the bottom of one of its "v"s. I think this is pretty common.
You had been a great help for me thank you.
“One of the worst aspects for me in hospital was dealing with the pooing and all the bags I had attached to me”
What bags the pee bag and what other bags did they connect to you?
“There are different design types for the neobladder so check with your doc for the correct schedule.”
You mean the types that you have a hole in your stomach right?
The one I’m hoping for is like yours.
“I haven't personally found biopsies to give me muscle weakness but it's not beyond the realms.”
Prednisone will weaken your muscles and since June 2005 first biopsy of the tumor and removing allot of the prostrate and the same again July and the final one in Nov.
I was restricted on what I could lift max 10 pounds during those times.. So a lot of the stuff I would do around the house like cutting down trees and splitting logs digging I couldn’t do plus the amount of time spent inside cause I kept bleeding,
So I’m not in shape muscle wise.
The trip I think will be postponed. Don’t plan on hitting the road if there is a slightest chance I’m not 100% ready.
He said "you must stop referring to your new bladder as a "neobladder" and call it "my bladder".
Yes, was a smoker. Quit about two years ago. But quite a light smoker. less than ten a day probably. And I had years where I didn't smoke.
Up all night doing irrigation stuff; with a neobladder the new bladder is made from bowel which still wants to be bowel and therefore produces mucous. This lessens over time but at the beginning can be enough to block your catheter when you go home from surgery with it in. I find now that some foods make me produce more and the antibiotics I took when I had infections made me produce loads of mucous interestingly enough. Anyway, you'll find that you have to flush the catheter with saline at the beginning to keep urine flowing through it. And you'll need to keep properly hydrated with the neo to keep the mucous flushing out. Don't worry; all of this will become a routine to you like brushing your teeth. Well, kind of
My bowels waking up took about four days and it was most unpleasant. My post surgery stools were like pooing lava and horribly stinky. It felt like no sooner had I eaten than I was on the can again. I think I had pretty full-on runny bowels (I can't spell the D word!) for about three weeks after this surgery and thought it would never end but it did. Some people have to make changes to their diet and the looseness lasts for months but I've found I can still tolerate most foods now (grapes give me a bit of grief). Like most of the worst aspects of this surgery, including the bladder training, it feels like it'll go on forever but it does gradually get better. One of the worst aspects for me in hospital was dealing with the pooing and all the bags I had attached to me. You get through this.
I hope to achieve 400ml in the next month so kind of 3 months+ from my surgery. There are different design types for the neobladder so check with your doc for the correct schedule. I've been pretty dry the last two nights which is also great.
Pelvic floor. Hmm. I have no experience with the drug you mention. I just looked it up but it's used for a wide variety of ailments. I would check with your doc. I haven't personally found biopsies to give me muscle weakness but it's not beyond the realms. There's some debate as to how much the PF exercises help with neobladder continence. I think if you ask most people on this site then they will tell you it helps and I certainly feel that's the case with me. If I'm being lazy about them then I notice a difference. How much difference? I'm not sure. You may find that even exercising them a little goes a long way and that it's not necessary to "stop the flow of urine" but just to control it a bit at the beginning.Being tired and run down also makes a big difference to my continence. If you keep in decent shape then I'm sure that's a good thing. I'm not talking about circuit training but just being sensible and getting adequate rest. You'll find that different people here can describe different PF techniques to you some of which may be more effective for you.
I'd also check with your doctor about the motor home trip. It sounds great! Maybe if you have a couple of months between the surgery and the trip then it'll be ok. I didn't plan anything for 3 months after the surgery and I guess if you are feeling rough, which you well may, then what you are buying back is many more years to go on great trips! Give yourself plenty of time to recover from this surgery Jeff. It's a big deal. If you have the neobladder surgery it's three major surgeries in one go. Don't hurry yourself mate.
Some useful things i had at home after surgery; plastic trays (from Ikea) to lay out things like bowls and syringes, antiseptic wipes, loads of extra towels, a couple of those plastic storage boxes to move kit around the house so you are not stuck in bed. Also I found probiotic yoghurt drinks both in hospital and afterwards really help your bowels deal with their new situation and help restore them to their former glory.
Another chap I was in hospital with (Peter) was about your age when he had his neo fitted and has been fine with it. He also gave me one of the best pieces of advice that I haven't followed (!). He said "you must stop referring to your new bladder as a "neobladder" and call it "my bladder". You'll get used to it a lot quicker". I immediately knew exactly what he meant and even though I don't always follow this, I try to be aware of it.