Squatty or notty? Definitely squatty, Shannon! Yes, I've been extremely happy with my neobladder. (Surgery was 18 months ago). Aside from a few minor things, I'm really back to normal. I lead a very active life in a not-so-comfortable third world country, including teaching an aerobics class 3 times a week, and riding in vehicles with no springs in pot-holed roads. No problem. The squatty potties (or using the fields!) are more of a challenge, as it is hard to press your bladder and lean forward in that position, but pressing my knees together and putting another fist in my side helps expel the urine. Still, I suspect I probably don't completely empty my bladder in that position. Thankfully I have a sit-down potty in my own home, and other places sometimes have them, too (though their cleanliness often makes me use the squatty potty instead if it's available! - " I don't care if I'm not completely emptying my bladder - I'm not using THAT wet, muddy seat!!" And trying to squat over that thing and expel my urine is nearly impossible! Give me the squatty!)
I have total continence during the day, and occasionally have accidents at night, but these seem to be getting less frequent. I should do my Kegal exercises more than I do (which is almost never)- that would probably help me gain that last bit of continence I need. I usually wear a sanitary pad to sleep at night in case I leak a few drops. Most nights the pad is completely dry. I used to keep a diaper changing pad under the sheet in case I wet, but it's really not necessary now. Every once in a long while I actually wet the pad (but not the bed), but that is usually when I am really exhausted or sick. I've learned to set an alarm in the middle of the night to make sure I get up once for the bathroom in case my body is too tired to read the now-more-subtle signs of needing to empty my bladder.
To the brother who who considered giving me "hero-status" from being out of the hospital in 3 days, I suspect my quick discharge had more to do with the hospital wanting to improve their post-op discharge rates than with any heroism on my part. (I remember at our initial enquiry visit, they boasted that their neo-bladder patients usually were out of the hospital in 5 days.) Being healthy and younger (55) they probably figured I could bear an early discharge better than the older ones who had been going through chemo and were weaker. I surely didn't FEEL well enough to be out, and was rather astonished when they suggested it! But it was nice to get unplugged from many (not all) of my wires and tubes and be in a homier setting. If I hadn't had an amazing husband who didn't need to be at a job all day, and was willing to do a lot of disgusting nursing jobs, and other wonderful relatives who helped with meals, etc., it would have been very hard. Impossible, really. If you don't have that kind of support, stay in the hospital to continue getting cared for. My husband is the one who should have the hero status!
The other small changes in a neb-bladder life that haven't been mentioned in other blogs I read:
* there is now mucous in my urine. There was a LOT at first, because your intestine is still behaving like an intestine and producing it. You have to learn how to flush out your bladder with a catheter and water in the early days after the operation. For men it is more of a problem, but we women have a larger diameter "pipe", and it is usually no problem expelling it. It just looks a bit different, and feels a bit different in passing it.
* the urine smells different - a stronger, more unpleasant smell
* my abdomen now moves! The doctors seemed to scoff a bit at this, saying my bladder was too deep down to feel its movement. But then they conceded that perhaps because I'm thin I have less fat to pad me and I might feel a bit of movement. I'm not extremely thin - just normal (5'5", 125 lbs), but there is definitely discernible movement, even to see, not just feel. It can be quite entertaining to put my phone or other object on my abdomen and see it rise up and down and wobble back and forth. Reminds me of my pregnant days! Have any other women experienced this, or am I just strange? It can be a bit uncomfortable when I'm lying on my stomach on the floor (like in aerobics classes). I usually ignore it, but I'm definitely aware of it. It is more pronounced when my bladder is full. It almost seems as if the movement is increasing over time rather than decreasing. I wonder if the intestinal tissue has figured out how to work as a unit now, rather than acting as lots of pieces of intestine sewn together. My whole abdomen will rise up on one side, and then recede, then rise up in another place, then relax. The human body is a wonder! How these cells even figured out how to move in unison in the first place is a marvel!
So in all, I really am very happy with my bladder, and am so thankful I can be as active as I was before. Life is really quite normal. I would love to hear about the experiences of other women with neo-bladders. The lack of posts from women makes me wonder if we are few and far between, or were their experiences not so positive and they are reluctant to write? Please write, positive or negative! We can all learn from each other.
Best of luck to you, Shannon, as you make this decision. I love your picture there. You look like a woman ready to grab all you can out of life!
Protein drinks and fruit smoothies kept me going immediately after surgery. Many people lose a significant amount of weight after surgery (some probably welcome this!), but I didn’t particularly want to lose more than 5 pounds, and I knew my body needed the nutrition to heal, so I forced myself to eat. What a waste to be in the States with all this yummy food available that I couldn’t normally have overseas, and to not enjoy eating ANY of it!!!
