-
Neo bladders in women
I’m a 55 year-old woman who was just diagnosed with BC 5 weeks ago, and had a cystectomy overseas where I lived. That showed muscle-invasive squamous cell BC, so we returned to the States for surgery. A friend got me in touch with a good doctor at USC Keck and last Wednesday just had a hysterectomy and had my bladder removed, and had a Neo Bladder put in. Surgery went really well, they didn’t have to remove much of the ureters, lymph nodes, etc., because it didn’t look like the cancer had spread. Discharged me in 3 days (!) I was surprised by that, but they said all my numbers were great and I was doing well. I was worse for 2 days after they discharged me – no energy, but better today (Day 6 after surgery). As others have written, I too, was an “anomaly.” – younger, not obese, non-smoker, teach aerobics, etc. I did have quite a few a-symptomatic urinary tract infections that I found out about accidentally over the years, so maybe I had them more regularly than I realized. It seems to be a contributing factor. I’ve also been to Egypt twice, though briefly, and only briefly swam in the Mediterranean, so that seems unlikely to be a factor. Who knows why these things come so unexpectedly! Anyway, I was distressed to hear several contributors say that Neobladders don’t seem to be successful in women. As I’m flat on my back with one in my belly now, it would be good to hear from any women who’ve had experience with them. I was told I was a good candidate for a successful Neobladder, but I do know it will be a lot of work ahead. Thoughts? Any thoughts on how much time I should give myself to adjust before I return to a third-world country?
-
12 Replies
-
Hello, I wonder if any of you have experienced chronic kidney infections since having the neobladder surgery? If so, have have you been treating the infections? Thank you.
-
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.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Mirpurlady,
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.
I am babbling so I will stop.
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. :sick: 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!!
Pat
Oh Boy!
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.
Shannon
:laugh: 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!
Greetings!
I am 61, active, and considering a Neo bladder. Are you still happy with yours? Able to travel as you indicated?
Your blog was so helpful in providing your sequence of experiences. I haven’t found any testimonies with that much detail.
I loved your mention of the overseas squatty potty! Have you been able to squatty—-or notty?!?!?
Shannon
Don’t have personal experience with radical cystectomy, BUT if I were going to do
it, USC-Keck would be my first choice! This seems to be one place where they are
successful with neobladders and women!!Good luck to you!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Greetings!
I am 61, active, and considering a Neo bladder. Are you still happy with yours? Able to travel as you indicated?
Your blog was so helpful in providing your sequence of experiences. I haven’t found any testimonies with that much detail.
I loved your mention of the overseas squatty potty! Have you been able to squatty—-or notty?!?!?
Shannon
Thank you so much for posting your experience. I am sorry that you didn’t at least get a welcome reply to your first post….I do remember it and was trying to find someone with experience (good) as a woman with a neobladder. They are few and far between.
If I remember correctly, you had your surgery at USC/Norris? They are really at the forefront of bladder cancer surgery and are definitely at the top of my personal list should I ever need that.
Your post will help many, I am sure. It is wonderful that techniques are advancing so that women CAN do this also!!
And yes, those “squat” toilets will be a challenge…I always KNOW I am going to fall in!
Best of luck for your continued recovery!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hello
I am sorry that you were not greeted at the door of this site when you first posted here. We usually have people at the door.
But seriously, welcome. I am not a woman so I did not respond initially as I can only attest to the male neo bladder. I have heard that women have had variable success with the neoHowever, You are a shining example of successful female neo bladder installation. !
After reading your 2 posts, I am turning my “Model Patient” status over to you.
A Hysterectomy and a Bladder removal and neo bladder and out of the Hosp. in 3 days? You are indeed a superhero! Model Patient has a new Ruler! All Hail the new Queen.I am glad you are doing so well and I wish you the best in the future.
Thank you for giving us such a complete story of your journey through recovery.
I am sure there are others reading this that can be helped by your positive journey.Good Luck in the future and keep us in the loops as time goes by.
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Well, it’s been about 6 weeks since I posted about neo-bladders in women, and not a person has responded, so I guess that means this isn’t a burning topic for most people on this forum. However, for the few women out there who may be considering neo bladders, I thought I’d write a bit about my experiences in hopes it will help other women who are considering this surgery, and wondering what is involved in the adjustment.
I had my surgery about 7 weeks ago. It was normal abdominal surgery, not robotic. I had a catheter in for about 3 weeks after the surgery. This was not as uncomfortable as it sounds. Just inconvenient to always have to be dragging around this bag, either pinned to the underside of a skirt, velcro-ed to your leg under pants, or hanging over the side of your bed at night. It gives your new bladder time to heal before stressing it with a lot of urine.
When I got the catheter out – oh happy day, freedom! — I was taught how to expel the urine and how to catheterize myself. Expelling the urine involves just relaxing the pelvic floor muscles as you normally would, but also pressing on your abdomen and leaning forward to completely empty the bladder pouch. It’s not really difficult at all. (Though I’m wondering how this will work on squatty potties when I return overseas! Anyone had experience? Sounds a bit tricky.)
Learning how to catheterize myself was for two purposes: enabling myself to pee if I get “blocked up” and am unable to urinate, and to “irrigate” my bladder. I’ve never gotten blocked, so the former wasn’t an issue. But for your bladder’s health, you are encouraged to regularly “irrigate” it. This sounded rather daunting at first, but wasn’t too bad. This was already being done after the surgery (initially every 4 hours!) by the nurses and then ourselves once I got out of the hospital. My angel of a husband helped with this task at home as long as I had my catheter in. It involves taking a large syringe (without the needle) and squirting water into the catheter pipe to go into your bladder, and then drawing the water out. This is to flush out strands of mucous that can gather in your new bladder. Remember, this bladder is made out of intestine, and it is used to constantly making mucous to do its job. Irrigation flushes the mucous out of your bladder so it doesn’t get blocked. I was assured this mucous production would subside over time, and indeed I hardly see any mucous now when I irrigate – which is now only every few days. The nurses early on said I am fortunate that the mucous my body produces is quite thin strands for the most part, and probably for that reason I have never had problems with blockage. Some people do, but women less than men, as our urethra “pipe” is wider than men’s, so it is easier to expel any mucous produced.
Once I got the “permanent” catheter out, I took over from my dear husband, and started catheterizing myself to irrigate. Not difficult at all, IF you have a mirror!! I found it impossible without one. The nurse said to try it over a toilet or on a bed. Neither worked well. On the toilet, without a mirror, I found the catheter wouldn’t go in correctly, and then would come out and hit part of the toilet and get contaminated, so I had to start with a new catheter tube. On the bed, I sank down too much to get to where I needed to go. I found it worked best on the floor, sitting on a small towel, with all the things I needed around me. It takes 10 minutes max to irrigate and then wash the necessary paraphernalia.
Somewhere along the way, after I got my permanent catheter out, I got an infection (I wonder if that toilet was a likely culprit!) The infection came in the form of low-grade fevers, for which I was hospitalized twice (once when the fevers went high and I had a short “seizure”. No fun. The doctors couldn’t find a definite reason for the fevers, though one test showed I had some E. Coli bacteria present in my urine (another test didn’t). Since after that incident my fevers stayed low and I didn’t show other signs of E. Coli infection, we decided to let me fight off the infection on my own. Regular antibiotics hadn’t cured me, and the E. Coli antibiotics can be quite toxic, so the doctors and I preferred to just let me fight it off by resting and eating well. It took me maybe 3 weeks, but now I’m doing MUCH better.
Speaking of eating well, you will find you have NO appetite after surgery, even when you are hungry! (Go figure!) There is something about messing with your intestine that takes away the appetite. Nothing looks good, and you have to force yourself to think of food as medicine and EAT, even if it is only a little! Many people lose 10-30 pounds. I found “Ensure” drinks, or their equivalent, were easy to get down and gave a lot of nourishment. Fruit shakes with protein powder were also good. Now, 7 weeks after surgery, my appetite is finally returning to normal.
My bladder is working well. I usually go 4 hours between urinating, and I haven’t had much leakage to speak of. None during the days (except when I had high fevers), and only some at night initially. Adult diapers these days are so good, it can be hard to tell if you’ve used them or not! This last week or two I’ve stopped using them all together at night, with no problems. The nerve in your bladder that told you it is time to find a bathroom is gone. I set a timer on my iPod to go off every 4 hours, day and night, to remind me to go. I now can “feel” more when it is time to go. It is different than with a natural bladder – more like an ache across your abdomen. The doctors say I’ll be able to gradually work my way up to longer times between urinating, but for now, every 4 hours isn’t bad.
The doctors and nurses all say the KEY TO CONTROL OF YOUR BLADDER IS KEGEL EXERCISES!!! These strengthen your pelvic floor muscles, which control all eliminating. If you are planning on getting a neo bladder, start these exercises NOW!!! (Look on the internet for instructions). As my surgery happened quickly, I regrettably only heard about these exercises the day before. And you can’t do the exercises during the 3 weeks after surgery when you have your “permanent” catheter in. So do them while you can! It can make all the difference to successful adjustment after your surgery! I had been taught to do these exercises after childbearing, so perhaps my pelvic floor muscles were already strong, and that is why I’ve been able to have a fairly easy adjustment. The doctors seemed pleasantly surprised I didn’t have much problem with leakage, so I guess this isn’t the norm. If you don’t want leakage to be your problem, either, start your Kegels now! It is well worth it! The routine the nurses gave me after the catheter was out was to do the Kegels after each trip to the bathroom. Ten long Kegel holds of 10 seconds each, and then 10 quick Kegels. I hope that helps you have success, too!
All in all, I have been very pleased with my surgery and my new bladder. I still struggle with tiredness, and with mental sluggishness (probably a residue of the anesthetic. They say it takes one month to fully recover from every hour under anesthetic). But these things shall pass, and the important thing is my bladder feels almost normal now!!! Quite amazing what modern medicine can do! I’m so thankful to those doctors and to God that I am now cancer-free, and on the way to resuming my normal life again.
I hope this has been helpful to any women out there who are considering this surgery!
Sign In to reply.
