Trouble Peeing
I am so sorry you are having difficulty voiding without
catherizing. In the past, when I have had difficulty, it has been caused
by one of two things: urinary tract infections(UTI) or lomotil taken
because of severe abdominal cramping effecting the neobladder as well as
my intestines. My neobladder surgery was in Feb 2002 and from May 2002
until November 2002, I had recurrent UTIs, making voiding difficult to
impossible and catherizing necessary. I was treated by my primary care
physician(PCP) and was repeatly given levaquin to treat it. With a
switch to Cipro in October 2002 and stopping catherizing completely, the
infection was finally cured, and I have not catherized since October 21,
2002.
The first month after surgery and the removal of the Foley, I
found voiding to be easy, merely a matter of relaxing the pelvic floor
muscles and bearing down a little. I read somewhere that straining was
to be avoided so did not strain much. As time went by, it became
increasingly difficult to void much volume. I think this retained urine
plus the catherizing is what started my cycle of infections. My theory
is that before the neobladder was stretched to hold much then voiding
was easy, but once it was stretched to hold 400-500 cc then it required
more straining to void. My problem was not straining hard enough to void
completely once the neobladder held more. It might be nice to be able to
avoid straining, but holding my breath and bearing down EXTREMELY hard
(Valsalva maneuver) is the only way that I can void completely. I asked
my urosurgeon if bearing down really hard could harm anything or cause
upper tract problems, and he said no to both. The powerpoint
presentation I mention below has a slide that comments on straining not
causing reflux into the upper tract with or without nipple valves. If I
remember correctly, Dr. Herr performed your neobladder surgery. He is
one of the urosurgeons that I respect the most. If he has forbidden you
from straining, then I am not advocating you doing so. However, I think
I would ask him if it would be detrimental to try straining harder just
to see if you are able to void that way. Of course, if you are like me
and there is any infection, then no amount of straining will help.
When I started having the difficulty voiding, my urosurgeon's
nurse and my PCP mainly had the attitude that many neobladder women find
retention a problem and caterizing necessary, and I was probably one of
them. However, finding the proper voiding technique and getting rid of
the infection was all it took for me to have a neobladder that performed
perfectly and as intended. My urine has tested sterile since late
November 2002.
Here is a site that lists Valsalva as the method for voiding a
neobladder and mentions that it is rare that males are unable to void
using this method.
http://www.urologyhealth.org/adult/index.cfm?cat=03&topic=41

Another site that lists Valsalva as the method used to void a neobladder:
http://www.emedicine.com/med/topic3061.htm
"Orthotopic neobladder'
This procedure involves using intestine to construct a continent bladder
reservoir in its normal anatomic position. Voiding occurs by Valsalva.
Advantages include improved body image and avoidance of a stomal device."

Here is a powerpoint presentation...must have Microsoft Powerpoint to
view it. On slide 33, the discussion on emptying a neobladder begins
with a discussion about the two types of voiders: Those who strain
thoughtout voiding and those that strain at the end of miturition.
Several subsequent slides are concerned with voiding difficulties.
http://www.smh.com/medlib/OrthotopicBladder Substitution.ppt

From an article entitled "Criteria for Successful Neobladder Surgery:
Patient Selection and Surgical Construction" on the previous site of the
Society of Urological Nurses And Associates(SUNA). I have not been
able to find it on the current SUNA site so you can use Google to locate
the article. On google, type in part of the title with quote marks
around it ("Criteria for Successful Neobladder Surgery"). The first
entry should be the site you are wanting so then click Cached to bring
up google's stored version of the site.
"Upper tract preservation. The neobladder must protect the upper tracts
by avoiding infected urine, reflux, and ureteroileal, anastomotic
obstruction. Unlike patients with either an ileal conduit or a
cutaneous, continent, diversion, those with a correctly functioning
neobladder usually have sterile urine. Unlike the natural bladder, the
neobladder does not contract producing a rise in intravesical pressure.
Instead, it empties under its passive end-fill pressure by outlet
relaxation and then, if necessary, abdominal straining. Because the
reservoir should be highly compliant, the end-fill pressure will be low
and reflux should not occur. Even with abdominal straining, no reflux
occurs (Studer & Turner, 1995)."
Sorry this is so long but wanted you to be able to read for yourself the
little information that I have been able to find on emptying neobladders.
Hope this helps,
Linda

Help!We're Facing Radical Cystectomy

Hello,
This is my first posting and I apologize in advance for any blunders or offences. I'd like to ask for some general feedback. My husband (49) had a very large (37 grams) high-grade, non-invasive tumor removed from his bladder in Feb. Six weeks of BCG followed and Monday we found out that new tumors had grown. We don't know their stage yet, but our doc has already begun educating us about radical cystectomy.
I'm frankly leaning toward that (although the decision is my husband's, of course)unless we're advised otherwise because I don't want to gamble. Anyone's thoughts? Also, we're at USC Norris (am I allowed to name names?) and this is actually our second doctor.
We like him very much and feel that this is an excellent institution, but is a third opinion still advised?
Thanks so much, Z

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Welcome to the group. Sorry to hear about the situation you and your
husband face.

As for the question about a third opinion, that is up to you. I feel a
second is almost always the best choice, but if you still have concerns or questions that have not been answered then get a third to put those to rest. Just do not put off treatment too long in search of other possibilities and allow for progression of the cancer.

It sounds like you are happy with the doctor(s) you have an the institution.

Good luck and God Bless
Chris
****************************************************
Awful tale after just a few months ago from initial diagnosis of your
husband, especially so quickly after the BCG instillations.
Everyone's tale is different as regards this issue. My own plight was clear from the get-go. Bladder must go! I am not tuned in to others stories with "tumors" removed otherwise... i.e.. chemo RX etc.
One must of course trust the pathology dept. and the knowledge of their own particular medical care. I live in a Seattle with a world of informed physicians. Nonetheless after the initial bad story of my 70% area of bladder TCC, I took my slides to another institution (on my own dime and my own initiative) and asked the head of University of Washington Medical Center what HE thought of all that.

Interestingly he asked me about the previous doc and his notions as to
what might be necessary. I did not share that with him. I mentioned my
intention was of course to get a second opinion objectively. He was no
entirely happy with that but concurred that those cells were indeed in his words "angry". My original doc said they were "hostile" Hmmmm .. medical jargon for the same thing.
On a personal note-- I was 47 then (5 years ago) and knew with great
clarity that Mr. Bladder must go! (and other parts) I asked the Urlologic
Oncologist Surgeon my odds. I asked him exactly this:
What are my best chances to rid this problem so as to be alive when my kids were graduating college and perchance off into their lives.
He said: To be sure-- let's go for the gusto. That meant bladder out--
prostate out-- urethra out-- 50% of ureter out-- and for no extra--appendix out as the bowel was made into my very happy neobladder.
Carve out a few lymph nodes here and there and that was the big event. NO chemo NO radiation thereafter although the cautious oncologists called in wanted to lay on those big guns. There was no real evidence that such aggression would help any more than the basic carving I had had.
My message is global here in a way. I had entrusted my own diligent
surgeon with my very life, trusting that he would know the score. The
greatest trust a person can have. If anyone feels that they have not the
most updated story on new or innovative ways of dealing with this nasty problem then they need to seek a confident, intelligent,
informed, and up-to-date MD to get the latest.
I was 47 with a whole world ahead of me. I am almost 53. I think of my
doctor as my personal Santa Claus. I do recall saying to him 5 years ago these very words: "Whatever it takes to keep my old bones around to see my kids get thru college and with blessings even see grandkids-- go do it!
Even if that means cutting me in half so they can push me around in a
wagon.. at least I will be here and see it all!" So here I am 5 years fully "clean" and happy as a lark on my borrowedtime. It takes a whole lot of information to know what is the right choice for everyone as regards this woe of CA Bladder. It is indeed rather dramatic for those folks who can "erase" those nasty tumors within yet to have them crop up again. I never walked that walk so cannot address the decisions of those afflicted. My choice was clear-- no advantage to the aggressor. I bought the greatest odds and live to tell the tale now... hopefully for years to come. On the journey with you all, Wayne

****************************************************
I went through radical cystectomy on February 28th, following five tumor removal surgeries and two failed BCG regimens. My urologist at Mayo Clinic recommended RC, but said they could try a BCG/Interferon regimen, which in his opinion would have a 50% chance of success in my case. The risk of my non-invasive reoccurences becoming invasive could increase the longer we put
off the RC. For my wife and I, the choice was a no-brainer. To me, the 50% odds were like playing Russian roulette with 3 bullets in the revolver...no thanks! I was able to get a neo bladder that enables me to urinate in the normal fashion, since the bladder pathology revealed no spread of cancer,and I didn't need chemo. I'm doing very well, except for an impotency issue that they said might happen, but for which there are various remedies...I sure hope so. At 67, I'm still not ready to retire from that part of life.
The surgery wasn't nearly as much of an ordeal as I expected. They had me up walking five times the day after surgery. Having to wear a catheter for 3-1/2 weeks was no picnic, but there are worse things. My continence has improved steadily, and the only problem I have with that is at night. We set an alarm so I can drain my reservoir in a timely manner, and avoid accidents.

I was extremely impressed with my surgeon, Dr. Michael Blute, and all the Mayo personnel who took care of me. I'd highly recommend Mayo. I have no regrets about my decision to have the surgery, and for the first time in two years have a very positive outlook about my future. I go back to Mayo in a couple of weeks for some precautionary follow-up tests, to make sure that everything is O.K.

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Sorry, did not get your earlier post, hence this delayed answer. You cannot do any better than USC/Norris. The Norris urologists are not only highly experienced and skilled, they are also compassionate and upbeat. They work closely with the oncologists and researchers, and they are leaders in the field of genitourinary cancer. We can recommend them without reservation.

Go to Webcafe's Tales From the Trenches & read Ben Olsen's story for more detailed info on his treatment at Norris. Ben was 50 when he underwent RC here in Denver in 1982. Luckily, he was sent to Dr. Don Skinner when he needed a second revisionary surgery in Jan 1985. Dr. Skinner and the Norris were, and continue to be, light years ahead of most when it comes to genitourinary cancer. We are fortunate to be able to go to Dr. Skinner for biannual checkups. Last Oct, along with the checkup, Dr. Stuart Boyd replaced Ben's 18 yr old penile prosthesis with the "millenium model."

Over the years we've heard from people from all over who need info - heard just about everything. Please feel freet o email or phone if you think we can help.
Best,
Roni and Ben Olsen
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I know that you've gotten several replies recommending RC ASAP. Given the high likelihood of recurrence, if I were your husband, I'd give BCG + Interferon a try. I had a single, high-grade tumor too, though not
nearly as large as your husbands. I went through a round of BCG and was then devastated by the news that I had two new tumors at my first
post-BCG scope. However, I opted for a round of BCG + IFN and had a clear scope three months later. Those RC-warriors that responded to you had generally positive things to say about their experiences with
neobladders, making it seem like that is clearly the way to go.
However, many others on this list will tell you that less positive
outcomes are also very possible, including complete neobladder failures.

In my mind, it's not a slam-dunk choice, since your husband's tumors
are non-invasive. There are several on this list who've had repeated
TURBs with several rounds of immunotherapy and have retained their
bladders in good health.

Please let us know what the latest path report shows. If there is any
invasion of the lamina (Stage I), I'd be more worried. Even though such tumors are still called "non-invasive", they are much more risky than those that only involve the bladder mucosa (Stage Ta). I'd talk over the immunotherapy options (BCG, BCG + IFN, Mitomycin C, etc.) carefully with the doctors and discuss the pros and cons of this route vs. RC. It's a huge decision, and you still have several options. Good luck whatever you decide!
Crilly
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We are pretty much just readers and we respond to individuals when
appropriate. Want to tell you that since my husband was diagnosed 10/26/01with Grade III, stage 1 - we did not sleep one moment of the night and could not eat or think, just worry, worry, worry. Then, on 3/12/02, Bob went in for anesthesia look and see after 6 BCG treatments and uro found bladder irritated from BCG, but the area where he removed the initial tumor in October had not healed properly and he was afraid that there was more under it. So, he scraped and found the remaining wall was so thin that he was worried. He suggested that we get it over with and we RAN to tell him YES!!!
Had the neobladder installed at Cleveland Clinic on March 15 and this was the best thing we have done for ourselves. After all path reports, there was no CA anywhere in the bladder, nodes, or prostate.
Now, the black cloud is gone and we are sleeping and eating again. Surgery was 9 hrs, recovery was painless and he went back to work after 8 weeks. Be GLAD that he is having it done - you will get your life back.
Regards,
Pat
****************************************************

Dear Web Cafe-ers,
I wanted to send an update to all because I've lost track of who knows
what and everyone has been so phenomenally kind and helpful. The update follows....and I have one question in the meantime: I remember reading somewhere on the site an email from a gentleman who had RC and sometimes forgets he even has a neobladder. I'd love to find this again....anyone know where it might be or who wrote it?
Again, many thanks to you all. I've been telling my closest loved ones
that the response I've gotten on Web Cafe over the past few days has
made me profoundly aware of the goodness man/womankind. You are
tremendous.
Thank you
****************************************************
We want to forget our new plumbing and go back to feeling like before-and in many ways we can-- but -- our new plumbing does require slightly different care and feeding.... Karen
****************************************************

Please refresh me as to your plans and the timing of them regarding
surgery. I am bombarded with mails of varying sorts but do recall your
situation is upcoming. Part of my interest in this group is to support
folks enduring the new hardship and hopefully chat about the unknowns you face. I wish people could have actually met me during my initail diagnosis at my early 47 years when I freaked out with it.
Then later to see how I walk, talk, sing, and work as if it were only a
small chapter in my distant past.
In a way to get BC rather forces us to face mortality directly-- far
earlier than we expected. It is a "gift" I often think to have had that
sneak-preview of finality and to deal with it. The aftermath is far more
refreshing when you survive the "Grim Reaper" having looked him in the face.
When Paul's battle is won you both will be different people and others' will know that. They will see how strong you are and emulate you. Be strong-- and cry when you need to.
Long life,
Wayne
****************************************************
I am also so encouraged by stories such as yours. I spoke to an RC patient of our same doc's yesterday who was playing tennis three weeks after surgery. And maybe most of all, despite the tears that come and the fright, our attitude is A Number One. We are facing facts...and planning a pre-surgery party on June 29. Give-aways will include directions to the hospital for visits. And I am seeing BC as a gift. We now will be able to help others as non-BCers cannot. To
me, that's what it's all about.
Again, thank you, Z
****************************************************
Hi Wayne

agree with you as far as it being a "gift" in the fact that we were given a reality check. I can tell you sincerely that it has changed my life (for the better) not that I was a bad person before but I am a better person now. Mary

****************************************************

Hello again and of course good luck with your plans for July 2 with the
RC. Good idea for a party before hand. Make sure Paul does not get too tired with that. He will need strength. In fact before my own big event I did all the right stuff--- much food (he will lose weight) and a lot of aerobic exercise to be ready for the assault. The byproduct of that(I do running) is that is also reduced my stress and I slept well beforehand.
My life now is "normal" of course but do bear in mind that there is one
rather important ditty in the scheme- that of possible impotence.
Being young, sex was important thing. (not to say that for a person 75 it is less important) I lost my natural mojo due to the surgery and Viagra was no fix. Please jot whether this will be your own situation.
It is terrible to have BC but then wonderful to lose it! But in the
losing of it there may be that impotency issue. That rather sucks, however science has solutions. In my own case the dastardly needle injection does magic. (In fact we call it the magic juice!) Now-- a sexually active fellow really does not want to hear about such things, as was I. Sex was always 100% Sex with chemicals is now always 100% My own testimony. I feel like Bob Dole!!!!!!!!!!!!!
Lemme know these personal things if you desire. They are important to wholeness.
Seattle Wayne RN

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In addition to the BC Cafe, I attend a "Wellness Community" cancer support group led by a Phd.Psych, I have another "personal" helpful
Phd.Psych.Therapist and I consult with an age 34 "young-thinking", progressive, Board Certified Internist who also has graduate training in nutrition and who embraces alternative therapies including:
nutrition, vitamins, herbs, acupuncture and "who knows what else"!
The bottom line is, after all the research that I have done and after all the lay and professional people with whom I have consulted ....including attending a "new patient" orientation meeting at USC/Norris and an upcoming meeting with some Kock Pouch patients as well as other continent reservoir, and other diversion method patients....that, unless my next cystoscopy (which is scheduled around Dec 10th) shows that the BCG treatments have performed "miracles", I will no doubt choose to go ahead with a RC.

I was diagnosed 8/1/01 with CIS/TIS covering the lining of most of my bladder. I enjoy a fulfilling and active sex-life, in addition to an otherwise fulfilling and active life. I am well aware of the statistics that show CIS recurs around 70% of the time and may become invasive at any time! I intellectually am aware of the side effects and very serious and significant "quality of life changes" that may come with RC. I am aware that corrective follow-up surgeries are not uncommon as well as Kidney stones, urinary tract infections, other "unpleasantries" and
that even with an RC, BC may reappear at any future time in the kidneys, brain, colon, lungs, liver, etc. This is the same "stuff" that most all of us know, either "first-hand" or from participating in the BC
Cafe site.
My current thinking is that RC statistically (at least for me, with my diagnosis) offers the best chance at long-term survival. I choose life! My personality is such that I do not want to constantly, for years to
come have to go through BCG and all of the alternative bladder instillations and get "scoped" every 3 months and put up with what for me has been fairly constant unpleasant and distressful side-effects.
I have sent a long communication to my USC/Norris Uro doctor explaining in detail my rationale and will make a decision based upon their (USC) judgment and findings. I am supported in my pre-decision thinking by my previously mentioned medical practitioners as
well as by my wife, friends and family. All of us but the very newest participants of the BC Cafe know that any decision that any of us make can at best, be the best decision for each of us individually. We all must travel our own roads and be accepting (and forgiving, if necessary) of our decisions. All of us must make what is the best
decision for each of us personally and we should have the grace (I'm still very much working on that!) to not wrongfully or harshly judge others for what may be a decision with which we may not agree. I think that RC may give me the best chance at enjoying my life, my
wife, my children, my grandchildren (I'm going to be 62 in a few weeks), my many pets, my friends and whatever other earthly joys and wonders may come my way.
Because of my many wonderful BC Cafe "friends", my choice has been much easier than if this fantastic, "priceless" resource did not exist. I will let you all know in a few weeks what I decide for certain.
I wish and pray for the best for all of us! Lots of love, admiration, gratitude and respect to all of you and may each of us be as comfortable as possible with the choices that we make.....Dave
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Neobladder Questions (M) -
Regaining Continence, Fluid Intake

I have a friend who had the surgery a couple of months ago and is able to wait an hour before going to the bathroom vs every 30 minutes. He has a neobladder and is most grateful. Doing 500 kegels a day to strenghten it. Can anyone out that help us know what to expect over the next year? In his mid-60's....very active (wants to be again)..

******************************************************
Hi Bonnie,

I had a RC (radical cystectomy) and neobladder construction exactly one year ago. I will be 58 on Thursday, so I'm not far off in age from your friend.

I am not in particularly great shape, although I am fairly active. I
never did the kegel exercises, instead I focused on holding the
neobladder closed. I'm not sure it makes much difference. I am
continent and the neobladder has held up to 950 mls. At my one year
check up, the surgeon told me not to hold so much fluid, as it would
make the neobladder "flabby" - the colon and bowl tissues used in the
construction of the neobladder are not up to that much strain.

I am continent, more or less, at night. I wear a Depend adhesive pad
day and night, although during the day it is usually dry. Sudden
laughter or coughing when there is a lot of fluid in the neobladder will
cause leakage. At night I now just go to sleep. I seem to wake when
the neobladder has started to leak, but I almost never have to do
anything other than empty the neobladder and change the pad. I still
have a waterproof crib pad under the mattress pad.

I recently sat through the 2 1/2 hour movie Harry Potter and I am not
limited in any way in my physical activities. Your friend has probably
had his erectile nerve severed. Orgasm (without the help of the
prostate) is possible but erections are not. I have heard from one
person whose husband has the inflatable penile implant. He has had it
for many years and it has worked well. My surgeon recommended the
penile injection. I only attempted to use it once. It took me almost a
week to get up the nerve to stick a needle in my penis (my wife about
fainted when I did) and the resulting erection was extremely painful.
(It would have been less painful if I had not been laughing so hard -
talk about anticlimactic.) The surgeon said that was not unusual and
the second time would be better. It will be a while before I repeat
that experience.

I would be happy to answer any specific questions your friend has. He
is also welcome to phone me if he would rather not relay his questions
through you. You can assure him that, with no complications, he should be busy going about his life in a normal way in a years time. The neobladder will be business as usual by then. I was a bladder cripple prior to the operation (which also caught cancer headed up a ureter) and I have an excellent quality of life now.

John

*******************
John, thanks so much for your response to Bonnie's inquiry about your neobladder experience. My name is Ray, the friend of whom she spoke. First a little about me. I am 67 and have known that I have bladder cancer since 12/94...BC was diagnosed very early in my case. There were several cysto surgeries in which TCC lesions were appropriately dealt with over a 7 year period...there were 2 sessions of 6 BCG treatments and one of BCG and alpha interferon after reoccurrences of CIS (carcinoma in situ). All this time, I had a great normal quality of life...just like normal except that I had to go to my urologist every 3 or 6 months.

For about 18 years (18 to 37) I was a moderate smoker. Otherwise I was in good health. I was a high school athlete and maintained a strong exercise discipline over the years including brisk walking of 2 to 5 miles daily the last 7 or eight years.

With all that said, since the occurrences of CIS were getting more frequent and couldn't be stopped, I was advised to have a radical cystectomy in September of this year. The recommendation was the ileal neobladder since I was in good health otherwise. That surgery was done 10/16/01, so I am almost 2 months post surgery.
The surgeon described the surgery as perfect...lymph nodes pathology was negative and the cancer was wholly contained in the bladder.

Where am I now? I started with bathroom visits very 20-25 minutes when the catheter was removed 3 weeks after surgery. Now 5 weeks later I am running an hour to an hour and a half between bathroom visits. I lost about 20 pounds during surgery, but have gained back 6 to 8 pounds. I now feel that I am continent during the day for the most part, but the night is a different story. I wear the necessary Depends and accessories and wake myself up every 2 hours 15 minutes and change as necessary. It is getting better, but I would love to achieve night time continence on a par with that which I have during the day.

You should know that I am a positive person, and I am grateful to be in my present state. I will do anything and everything that is required to reach an optimum state (I even do Kegal exercises while waiting at stoplights). I also am impatient and I probably will get there like you have in due time. The changes have been significant in a relatively short period of time (25 min to 1 1/2 hours bathroom stops in about 3 weeks), so I want to make sure that you do not think I am complaining.

At this point I am not concerned about sexual potency or lack thereof. Before I had surgery my physician told me 6 months with Viagra. We will see.

So in conclusion, any advice from your experience would be appreciated. I particularly would like your response to these questions.

1. What is your maximum time between bathroom visits?
2. Is the time different between day and night?
3. Do you have any hints on how to achieve night time continence?
4. How long did it take you to get to your present state (maximum time, day, night, etc.)?

John, again thanks for your note to Bonnie and for your time answering the questions I have raised.
Ray
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This e-mail address is being protected from spam bots, you need JavaScript enabled to view it wrote:

> I wear the necessary Depends and accessories and wake myself up every 2 hours 15 minutes and change as necessary. It is getting better, but I would love to achieve night time continence on a par with that which I have during the day. <<

That is the common reaction of most folks to mastering the neobladder. Days are fairly easy but nights take much more time.

> I particularly would like your response to these questions. 1. What is your maximum time between bathroom visits? <

During the day, from three to five hours, as an estimate. I don't time
the trips, although I may have to start. I usually move around quite a
bit and, as you are aware, certain leg stances or kneeling positions can open the neobladder. When I experience a leak I head for the bathroom.

At six months my neobladder could hold 550 mls. Recently it held 950
mls. When I reported this to my surgeon at the one year check up he
told me to urinate more frequently, as the neobladder could become
stretched and flabby by extending it too much. Thus the need for more
frequent trips.

> 2. Is the time different between day and night? <

Yes. At night the neobladder begins to leak about two to three hours
after I go to sleep. I somehow wake up after I have dampened the
adhesive pad, but before I have leaked on the sheets. After changing
pads and urinating I sleep the rest of the night. I would do better if
I restricted my liquid intake before bed, but I don't. The need to get
up once is far better than my original equipment bladder ever did.

> 3. Do you have any hints on how to achieve night time continence?<

I hit upon using a vibrating alarm clock, at the suggestion of a former
BC list member. This was effective at waking me up, but it also woke up my wife. The vibration sounded like a diamondback rattler had crawled into bed with us. My wife goes to sleep quickly, but once awakened, she has a hard time getting back to sleep. It began to look like she would have to sleep in a different room, and that was totally unacceptable to both of us.

At about nine months post surgery I simply quit using the alarm clock.
I slept with a waterproof crib pad under the sheet anyway, so I figured
the worst that could happen was that I would wet the sheet. That
happened for about four or five nights. I would change pads and
underwear, put a couple of towels on the wet area of the sheets and go back to bed, washing the sheets the next morning.

I cannot explain why I stopped leaking so much that the sheets became wet. I just did, and it happened in less than a week. Somehow I become aware that the bladder is full and starting to leak. I doubt if this would have been possible much earlier, as the large capacity of the neobladder during the day seems to correlate with better night time
capacity. The issue that did bother me for quite a while was sleeping with the waterproof pad directly under the sheet. The body gives off moisture all of the time and the crib pad does not allow the moisture to
evaporate. When I would get up to change pads and urinate I would find the area under my torso wet when I went back to bed. After a long
period of not wetting the sheets I placed the crib pad under the thick
mattress pad. This helped, but I still did not have enough breathing
material to keep the bed from becoming wet.

A couple of weeks ago we stumbled on to a wool fleece mattress pad I
bought after back surgery in 1983. It perfectly fit half our king size
bed and is washable. I placed this over the crib pad but under the
mattress pad, put the sheet over them and finally am sleeping dry.

> 4. How long did it take you to get to your present state (maximum
> time, day, night, etc.)? <

This has been a continuing process. I was in very good shape after 10
months (day and night), but I do even better now. I am most pleased to
be at a point where my capacity is so great I have to urinate more
frequently.

The big change is more psychological than physical. At some point
working to control my neobladder stopped being a focus in my life. I
rarely give it a thought, and when I do it is to marvel at what I can do
now. My bladder never functioned well. Took forever to get a flow
going, had to be emptied frequently, got me up about three times a
night. I never sat through an entire movie. Now, as the rest of the
men in our age groups are experiencing more frequent urinations and
restricted flows, I just smile and shoot. King of the urinal!

> John, again thanks for your note to Bonnie and for your time answering > the questions I have raised. <

I'll be happy to answer any other questions you have and share any "work arounds" I have discovered.

Good luck on your continued recovery. Your lymph nodes were clean and the radical cystectomy has eliminated the source of your cancer growths, so you may experience no further problems with bladder cancer.

John

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Hi Ray

> John, one of your answers reminded me of an additional question.
> Before my neobladder surgery, I was like a camel with respect to
> drinking water (or any liquid for that matter). I drank very little.That >has changed 180 degrees since surgery. Now I want something to >drink all the time, and the urge is greatest as bed time approaches. >Did you experience anything like this? <

I'm not sure I have more of a thirst now, but I do find that as bed time
nears I want more to drink. I live on the low desert where summer
temperatures can often hit 115 degrees and higher, so I am aware of my fluid intake. During the winter I just drink when I'm thirsty, during
the summer I drink a lot to stay hydrated.

I have seen a number of recommendations that a high water intake is very helpful, especially in keeping the mucous discharges from getting too thick and clogging up the urethra. (I doubt that anyone with a
neobladder will ever again order egg drop soup.) I think the desire to
drink is probably a good thing. There are folks on the list who have
had to learn to catheterize themselves due to the mucous plugging up the urethra. Lots of liquid dilutes the mucous and makes it less likely to
cause problems. I notice when I have not been drinking much that the
mucous is much denser, although I have never had any problems with it.

I just drink what I want and expect to get up at least once. Some of
the men on the BC list make it a point to limit their liquid intake
after 6:00 pm. I don't know how much that helps, but it must.

Merry Christmas Ray,

John
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Hi John.

Thanks for your answer. I had neglected to mention that I live in Cary, North Carolina (Research Triangle area). Since my surgery, the weather has continued to be very warm and humid even though it is almost winter. This probably has something to do with my thirst. You point is a good one...the more liquid intake, the less mucous is likely to present a problem.

I am with you. I always preferred wonton soup anyway when Chinese was my fare, but I will assure you that I will never have egg drop soup again regardless of the circumstances.

From one positive guy to another, thanks a million. You have been very helpful.

Merry Christmas and a Happy New Year!

Ray

Nighttime Incontinence with neobladder (M)

I am almost three months neo-bladder post-op and am having a heck of a
time with night time incontinence. Pretty much have daytime under control though, and am thankful for that. I am going broke trying to find some type of protection that will work all night and prevent the bed sheets from getting wet (diapers, pads, etc.), but so far to no avail. I find it very frustrating as well as seeing my wife getting weary of doing laundry everyday. Can anyone recommend something that works short of catheters?
R
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Hi,
I set my alarm to go off at whatever interval is needed, anywhere from 2 1/2 - 3 1/2 hours. I am unable to void completely, so I have to catheterize before bed and when I get up. For those times when I am too tired or turn off the alarm, I have found the Depends disposable undergarment (the one with tape tabs on the sides) and 2 Depends Boost liners set at the extreme right and left of undergarment pad usually prevents any leakage. Most of the time I get up before I wet, but you have to plan for worst-possible-case. I also use a disposable bed pad 36"x30" which I hold in place on the bed with a worn-out bath towel tucked in under the mattress. I hardly ever have to replace this, but it does protect the bedclothes and mattress just in case. S
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Hi, visiting nurse here mentioned a "texas condom" it has a tube attached to a collection apparatus, Guess it won't help with traing yourself, but it seems like a way to take a rest from 'wet sheets"
good luck and well wishes.

***************
I share your pain my friend! I set my clock for every three hours and usually wake up wet even with a heavy pad inside my depends. I am three and a half months post op and cannot seem to get my brain to handle the situation yet. My new trick is to cath just before bedtime and it seems to help. I wear a condom catheter occasionally to try to get a good nights sleep, however I seem to wake up often defeating the purpose.

If you find the trick, please let me know.
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Sorry to hear about the night time continence, although I don't think its too unusual. Wish you were having better results. I think its encouraging that you are continent during the day and think thats an indication that eventually night time will work out as well. Here are a few thoughts on what might help in the mean time.

If you're not already doing so, limit your fluid intake in the evening. I used to drink nothing after 9 pm, others have stopped at dinner time. Also watch your salt intake. I noticed that lots of salt resulted in water retention for me, and when the water wanted out, it wanted out. Reducing the salt seemed to even things out a bit and make it less likely that I would have to void alot in the middle of the night. A doctor told me once that laying down made it easier for your body to remove excess fluid - so maybe reducing the excess will help.

I also noticed that food reduced voiding - I think due to the water being used for digestion. A light snack before bedtime might help (but you might have to walk the calories off the next day!)

I had to put my alarm clock on the other side of the room so I wouldn't turn it off and go back to sleep. I get up one time in the middle of my sleep cycle and that seems to work out pretty well. For a long time, I slept with a waterproof pad under me - the type used for a baby changing table. I bought a few of them (measuring roughly 2' x 3') and that way if I leaked, it was less stressful. Simply grab a new one, change and go back to sleep. I'm a side sleeper, so I used a depends gaurd for men turned sideways. If you get the one eyed monster aimed in the absorbent part, it will hold an ocean. If you miss, you'll be in an ocean. It took some experimenting for me to get the pad positioned just right, and I was just about to resort to duct tape when things started to work out.

Kegels. I think you probably know how to do them, but in case you or any other guys don't, imagine hanging a towel on your "towel hook" and doing towel raises. That will help regain the muscle control, but it takes time. Also, make sure you are as empty as possible for going to bed. Try sitting to void, bending forward, whatever seems to work best. Experiment a little. Also, if there's a littl mucous in your urethra, try to get it out before going to bed. I don't think it closes off well when there's a blob of slippery gunk in it.

There's light at the end of the tunnel. I leak only occasionally at night - haven't done so for about a month, and it was very little. Hope this helps - and best of luck to you.
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what my husband does is use a pad that is water proof on one side and a heavy towel.lots of laundry he has had a neo bladder for five yrs. days haven't been a problem but nitetime is still a problem now if he drains it before bed he sleep longer before he is wet.now he is try to push more out.because the drain was causing infections.hope this help some one

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My husband has a neobladder and we asked questions prior to surgery about the very problem you are experiencing because it was a big concern for him. My husband's surgeon said that in a very few no. of male patients that were not able to achieve both daytime and nighttime continence with a neobladder, then he would consider surgery for an artificial sphincter. If in a few mos. after working on the kegel exercises, etc., you do not have more success, you might ask your surgeon about this option.
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I am two years post RC (neobladder 3/3/2003), and have been totally incontinent since my surgery. Most of the time for the last year I have used a penile clamp, but a month ago I had a AUS (artificial urinary sphincter) implanted. It has been wonderful, but not as good as the article referenced by Jolene. I find that certain activities (mostly getting up from a chair) sometimes will cause the sphincter to open, and I leak all over. The rest of the time is quite dry. I am still working with my dr. on fine tuning the device. The bottom line is that, if you are dry during the day, I would never consider an AUS. It is better than incontinence, but it comes with its own set of problems. ... And wait a lot longer before you do anything drastic.
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Incontinence with neobladder-women

On March 17 of this year I had an RC with a bilateral salpingo oophorectomy and a Studer pouch urinary diversion. Drs. Craig Zippe and Charles Modlin
performed the surgery at the Cleveland Clinic. I'm told that the operation was unremarkable (if you discount the miracles of their skills and my own survival) and my 9 day hospital stay was uneventful. As the single tumor was "most likely" a urachal adenocarcinoma, with negative lymph nodes (12 removed) and negative margins, I have been advised that adjuvant chemo radiation isn't really worth while.

The myriad tubes were removed one month ago, on April 7. My primary concern now is incontinence. Though the neobladder passes urine whenever I sit on the pot, it also "leaks" when I stand up, walk, bend over, cough, sneeze, laugh, etc. etc. I am still having to set the alarm clock to get up every 90 minutes at night to change pads (and sometimes Depends also) and the same 90 minute window is all I have during the day before a change is necessary. I have seen the surgeon and know that the urine is from the bladder, and not from a fistula in the vagina. As I am nearing 8 weeks out from the operation, is all of this dampness to be expected?

My other question has to do with stamina....or lack of it. I am 61 years old, but have been extremely active with my horses for many years. Now, I find
> that I have to nap every day (90 minutes, of course) and I can do one thing per day. For example, today I did laundry. Tomorrow I'll scrub the horses' water buckets. The next day I'll wash and dry my hair. I am weary. Have any of you found this to be the case? Am I just too anxious for "normality"? Am I too old to ever return to my active life syle?
*********************

My only thoughts about incontinence with your neobladder go back to a consult I had with Eila Skinner at USC Norris center before my own surgery. I asked what she would do to alleviate risk of incontinence with a neobladder and she said "nothing" at first. If incontinence was found to be a problem after the surgery, she said she would perform some procedure to correct it. I believe it was some sort of internal sling somehow attached to the pubic bones. The bottom line that I walked away with was that if incontinence was a problem after the surgery, there are procedures that can be used to correct it. At the same time, I'm not sure you are far enough removed from your surgery yet to know how it all will come together. You could still be healing and the incontinence could still be temporary. Hopefully others will share similar stories with you.

The surgeon I chose for my surgery automatically performed a vaginal tuck during the radical cystectomy - erring on the side on hypercontinence so incontinence was not a problem for me.

RE stamina...it hasn't been very long since this major surgery for you. Your body is undergoing major repair utilizing your available energy for that first. Everyone is different.
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Welcome to the List, and it is good that you decided to post. I had a radical cystectomy (RC) in Feb. 2002, but it was for transitional cell carcinoma. My TURB before the RC showed Stage 2 papillary, and the path report after surgery showed CIS.

Were you given instructions about gradually waiting longer between voidings in order to stretch the neobladder to hold more? You should stretch it to hold a maximum volume of 400-500cc. That would mean you would be able to go at least 3 to 4 hours between voiding, depending on how much fluids you have been drinking. I never did have any profusive leaking. When it was past time to empty the neobladder so it was overfull, I would gush when I sneezed, laughed, or created abdominal pressure by taking a deep breath and calling for one of our dogs...learned to go void before doing that one.

I started out being able to hold 100-125cc and made myself wait 15 minutes after the lower abdominal discomfort (sorta' like cramping) started even if that meant slight leakage. Then, when I could go that long without any discomfort or leaking, I added another 15 minutes and continued along those lines until I had stretched it to hold the 400-500cc. Luckily, my neobladder stretched easily so within a month I was able to go the 3 to 4 hours between voiding. I do not know if some designs stretch more easily than other designs. I did not have the Studer like you. Instead, mine is called a spiral or VIP (Vesica Ileal Padovana). For the first 6 months if I waited too long between voidings, I might leak a little or a lot if I had a sudden sneeze. Over time the leaking became less and less. However, even now I do wear a pad because I would rather do that and never have to worry about accidents. Once I could hold 400-500cc volume then I rarely had problems with nighttime incontinence. I did have to set an alarm for 3 hours after I went to sleep to wake me for voiding. Ended up having to move it across the room because I would turn it off and go right back to sleep and wake-up either wet or holding way too much...it is very important not to overstretch the neobladder.

I established satisfactory continence long before I regained my stamina. Some people say that it takes a month for every hour you were "out" for the surgery. Although I could do most things a couple of months out from surgery, it was at least 6 months before I felt I really had my stamina back. In fact, I still fall asleep much easier than ever before in my life and wonder if it is a lasting effect of the anesthesia.

Keep me posted on how you are doing as I hope you are soon able to go longer than the 90 minute schedule you are on right now. Hope this helps,
Linda neobladder 2/2002
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