My story is not one of the best ones. I had some complications. I was in the hospital for 12 days. There was a kinK in my intestine where they stapled it back together. They take about 50cm of intestine to create the neobladder and then staple it back together. My suggestion: Ask the surgeon to sew it together. It takes more time but has a lower risk of problems. We didn't know this at the time (about the kink). We just knew my intestines were not wanting to wake up and when they even did they just were not working. So I wound up on IV feeding only for a long time in the hospital. They were x-raying me and the kink didn't show up in the xray. When your intestines are all messed up it is not a happy time!
It took a year and half or so before it was finally figured out to be kink. I had been hospitalized three times for intestinal blockages so finally had them go in and check every inch. That's whey they found the kink and that the upstream side of my intestines had been working out like a body builder trying to push food through that spot. Since I got that fixed I have been fine.
So, back to initial recovery. I got out of the hospital but was still on pain meds and still had a catheter in. My wife is a nurse so she took care of flushing the neobladder through the Foley catheter I had in. I could have done it myself and they taught us how when I was in the hospital but my wife wanted to do it and I was perfectly happy with that. Just involves hooking a big syringe up to a valve on the catheter tube so sterile water could be pushed into the new bladder (neobladder). Then it is drawn back out. Intestines create mucous so that has to be cleared and you don't want any kind of buildup because you want to control how much you stretch the neobladder over time. This stretching is controlled (after the catheter comes out) by having a short schedule for how often he urinates. It will be like every two hours for a while, then adding a little time over time until it gets stretched out to about 400-500cc in size, which is the regular bladder size. The info about that is on the post surgery link I gave you already.
On the 2nd week I was home I started getting online and doing work. I'm a consultant so I can work from home. I could some short calls with people as well. I'd do a little work here and there each day and my attention span and capacity to think and not be exhausted got better every day. The sooner off the darn pain meds the better.
I was frustrated as all get out that even though I was doing the exercises I couldn't control the leaking. Then it just started working. I was able to wear a pad in my underwear and get around and do things without a problem. The doctor would not let me fly for two months but his concern seemed to be more about blood clots and lifting things (like luggage or carry on bags).
It can take six months to fully recover. As for me, I felt pretty much 100% after 5 months and I'd say I was 70% in two months. I was out of shape and overweight to start with though and people in better shape recover faster. I was 47 so from an age perspective my recovery time was ok. Just would have been way better if I was in good shape. That's pretty much the case for everything though I think.
When it gets to surgery time, we will give you all the secrets to faster recovery. Users here have varying degrees success and pretty much experience what the studies say. He should chew gum after the surgery (needs to be coherent though and not swallow it). This sends signals to the intestines that they may need to do something. Those signals often shorten the time taken for the intestines to wake up. The key to the universe is waking up the intestines!!!! TRUST ME!
The other thing is walking. He needs to get out of bed the very next day. He will NOT want to and you guys need to discuss this ahead of time because he will not be happy about you telling him to get out of the bed. He will say he can't and he must feel worse than those crazy people on the bladder cancer site did. He will be wrong. We ALL felt like total crap and sort of like an 18 wheeler rolled over us a few times. The first few times out of bed have a nurse come help. He has to be careful about using his abdominal muscles getting into and out of bed. First time, walk in place next to the bed for as much as he can do. Again, this is ALL about waking up the intestines and walking is the magic answer (in addition to the gum). He needs to walk four times a day and more if he can. His doctors and nurses may have a special protocol for walking and if so do that instead of what I am saying. It is usually at least four times a day after the first day.
Once he starts passing gas, they will let him liquids. They will be listening for bowel sounds regularly because once the bowels wake up he can start liquid diet and then move to soft diet and then go home! If he is in good shape this can be in as little as four days but more likely five or six or even seven.
I probably have hit you with too much info now so I will stop at this point.
We know that this is a REALLY scary time for both of you. Know this however--you are going to get even closer in your relationship through this process. He's going to be thinking about you and you are going to be thinking about him and you both are going to be facing this together. You will get through this together!
Hopefully, your husband can even join us here and then he can be asking questions now and then sharing his experience with others down the road. Not only after he gets out of the hospital but years afterward. New people come here all the time. For me, it has been almost 4 years since my surgery so I forget stuff. Folks who had surgery more recently will remember more and hopefully some of them will jump in soon.
Mike