The problem with a lack of a lot of information on neos in women is that there are not that many, compared with the other diversions. The results in women have been much more problematic than in men, often resulting in either complete incontinence or the necessity of having to cath every time. These issues have caused women and urologists to be very conservative. Dr. Skinner is known for being much more successful than others in using neos in women.
We have to remember that while an RC is life-saving, no one has said that ANY of the diversions are ideal. People do adapt and lead full lives with any of them, but so far no one has truly replicated the original equipment! That is why research on growing new bladders in tissue culture is so exciting.
The Cleveland Clinic review is excellent and mentions a lot of the pros and cons. Of course they do not apply to everyone....just as the lists of side effects that come with every bottle of medicine do not happen to everyone. If we read those lists carefully we would never take another aspirin!
Each patient must chose for themselves what chances they are willing to take, how hard they are willing to work to make any diversion successful.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Your post is wonderful. I agree with you that there are far too few (nil is a better word) stories about women and their neobladders. It is like a secrete society when it comes to Neos and pouches. Maybe these diversions don't have as many complications as the IC so that's why we don't hear from these folks. I don't know.
I do know that my local urologist said Neos tend to leak with women. My surgeon (Skinner) was willing to do a neo on me even though my choice was an IC. I wonder why the different take on Neos from both doctors. I will say Skinner didn't argue with my husband and I when we said women don't have the same system as men (think p-trap) therefore leakage is more common in women than men.
While recovering from my RC in the hospital, my roommate was there to have 31 stones removed from her I-pouch. The first drug-hazed thought that came to me was I am glad I didn't get a pouch. Also Skinner didn't talk up the pouch much.
Cleveland clinic's pros and cons for each diversion is OK. I disagree with their statement that IC will produce stones OR urine will back up into the kidneys. How can this be when the urine drains out of the body into a bag that hangs on the outside of the person? Grrrr. It would benefit bladder cancer patients if the source was more credible.
Hey, kindred spirit! Thanks for your encouraging words. I must admit that talking with the world about my urinary issues through this blog has always felt a bit weird, but I was dismayed by the paucity of information on neo bladders for women when I was trying to make this decision, so I thought something I wrote might be helpful to someone. Glad it has been for you.
Regarding prolapsing bladders, my doctors never mentioned this as a possibility, so we didn’t discuss this. I don’t know if this is because they thought themselves very skilled and could avert this possibility, or if it was because I’m fairly fit, so they didn’t think it was likely, or if they can arrange the plumbing when they do they hysterectomy at the same time as the neo bladder, so that a prolapse is less likely. It would be worth asking your doctor. In any case, though, I assume (I might be wrong about this) they staple the bladder to the abdominal wall, so I’m not sure I understand why prolapsing would be a danger. Ordinary doctors here in Pakistan are astonished to see my x-rays with my abdomen full of metal staples, and it causes quite a stir! Fortunately my stomach doesn’t set off airport alarms!
Still, it couldn’t hurt in the short time you have before surgery, to get as fit as possible – especially lots of abdomen strengthening exercises and Kegels. These muscles will all get weaker after surgery, as you won’t be able to use them much. So strengthen them while you can.
My doctors also advised me to drink a pre-op nutritious power drink for the 10 days or so before surgery. It might have been Ensure; I can’t remember. I also drank those after surgery, as it was about the only thing I wanted to get down. You will have NO appetite afterwards, even when you are hungry (go figure!) I think messing with your intestine makes it reluctant to process any food for quite a while. The doctors told me to think of food as medicine, but it was sure hard to get down. 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!!!
Anyway, I’ll be praying for the doctors to have wisdom to know what is best for YOUR body. Stay in touch, and let me know how it goes. I’ll be especially praying for you on the 18th!!
I don't know your name, but you must be a kindred spirit. I can feel your immense positive personality in your writing! You must be full of adventure yourself to be living in a third world country.
I cannot thank you enough for sharing the REAL DEAL--what your life is like with the neo bladder. That is just so cool about the movement your new bladder has acquired. The body IS amazingly adaptable. I bet you confound your doctors on a regular basis!!!
I honestly have not been able to find first hand accounts of women with the neobladder who describe the details as you have. You are amazing!!! Possibly the reason not many respond to your blog entry is they are satisfied and aren't looking for answers to their quandaries!?!?
I do have excellent support here in Birmingham, Alabama in the form of my most excellent spouse, family, and friends. I really appreciated you sharing how you cathetorize. Makes perfect sense, but it would take me much frustration to figure that out on my own I am sure.
I do have a question for you. My surgeon says that he won't know if I have a good body for the neobladder until he gets in there and sees supportive ligaments, etc. I have read that those of us who have had total hysterectomies have spaces in our abdomens that without support can cause a Neo bladder to prolapse.
Did your doctor mention that he wouldn't know until he got in in there if you would be a good candidate---- or since you had your hysterectomy proximally, did they arrange the "furniture" to accommodate your new bladder?
Thanks so much for both of your posts! As I mentioned, your very detailed accounts are invaluable for those of us about it have surgery. Mine is December 18.
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!