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Neo bladder question
***I originally posted this question in Men’s Issues but had no replies – maybe this is a better place to post this question – Thanks***
A question to fellow neo-bladder warriors.
I have read somewhere that over filling a new neo-bladder or voiding too infrequently too soon after the operation can cause it to overstretch and become floppy – has anyone out there have or had any experience with this problem, and what besides voiding more often could be done to minimise the chance of it happening?
Winning the battle :-)33 Replies-
Hi Leigh,
I had a lengthy discussion with my doctor today about the need for catheterizing. His opinion was, as I understood him, that it is only necessary if you are unable to void or have not voided for more than 6-8 hours. It is used to break up any mucous plugs.
i guess every doctor has a different opinion and maybe it’s based on the type of neo-bladder you have.
Mike
Michael
Age 58
Stage T2-T3, muscle invasive
Married to Eileen
2 sons, ages 20 and 23
[quote author=Leigh link=topic=1419.msg10687#msg10687 date=1195565604]
I say to myself just a few more minutes…just a few more minutes..
[/quote]I think we’ve all chanted that particular mantra.
If there’s one thing I’ve learned in the last year it’s that we have to strike “just a few more minutes” from our vocabulary. When you have a neobladder and you have to go, the clock is already ticking. That’s one of the problems with getting almost back to normal–we start to feel like our formerly invincible (and totally continent) selves. We are–almost. But that “almost” can get us into trouble.
I’m still trying to put into practice that when I feel the urge to go, I should go right now. You can procrastinate on a lot of things–haircuts, trips to the dentist, mowing the lawn–but telling your bladder “just a few more minutes”, especially in public, is a lesson you really don’t want to learn the hard way.
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein
Hi Leigh,
I don’t know, it seems different doctors have different approaches to catheterizing? Unless someone else here on this forum might know the reasons for, for and against – I’ll just have to wait for my next check-up to find out.
Your continence is good for the time since your op. I too had dribbles after a sneeze or cough, but it gradually improved to 100% day and about 98% night. I’m now about three and a half months post-op. I’m sure you’ll see similar improvement in the coming weeks.
Have to agree about the cold weather too. Since it has turned pretty chilly here in Ireland, I have noticed a feeling I can only describe as quite like the urge of my original bladder to pee… a little spooky! And yes, I’m going more often too, especially after being active outdoors.
Karl
Winning the battle :-)
Hey guys,
I am starting to wonder now why I was told to self cath and to continue to do so for the duration. My Urologist mentioned that it was important to cleanse the neo-bladder at least once a week from now on to reduce the risk of bladder stones and other neo-bladder health issues. Not sure what other neo-bladder health issues he was talking about.
From the time I left the hopital after the catheters were removed voiding was never an issue thankfully…so self cath for me is never to void only to cleanse. I pee every two hours sometimes stretching to every three hours. I have 99% continence during the day and 90% during the night. I wear the Tena mens towel in my underwear during day and night for any leakage. Leakage occurs when I sneaze or cough …when I have a few dribbles lol
I have noticed that since the weather has been turning colder recently over here in Holland I tend to dribble more often during the day and my frequency of needing to void has increased during cold spells to once sometimes twice an hour…
Regards
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum
I’ve personally never done self cath except at the very beginning to prove that I could. my uro onc nurse said they’d prefer it if I didn’t. I gave myself at least one infection doing it at the beginning which is also a risk.
tim
I don’t know Karl…some have never done it like Zachary……a lot of women have to do it forever as they are more prone to hypocontinence…….i’m thinking its an individual thing with whatever doctor or institution you have your surgery done??
Pat
Thanks Pat,
I think I need to speak with my doc regarding catheterizing at our next meeting. Thanks for sending the link. By chance, do you know is there a general time to stop catheterizing for people with neo bladders?
Karl
Winning the battle :-)Hey Irish Guy…….take a look at these…coude tipped caths…they work especially well with men……http://www.exmed.net/dept.asp?dept_id=27
Also call the mfg. Bard at 1 800 532 5274 and see if they will send you some samples to try out. I did this when i was trying to find the right cath for myself..i actually keep two kinds on hand..when one doesn’t work the other one does..i have a tempermental conduit also.
i hear what you say Zack about diet and mucus but i would swear when i eat ice cream i’ve got a lot more mucus..maybe its all in my head!!
Pat
Thanks Leigh,
I didn’t know one could get a catheter with a turn on the end. Maybe this would be the one for me. I wouldn’t like to do it, but if it helps to avoid getting stones at a later date, then I would gladly do it. I’ll speak with my doc regarding the above.
Take care,
Karl
Winning the battle :-)
Hey Karl,
I had problems with self cath also, I had a short stay in hospital…3 days… to have the catheters removed and then taught how to self cath.
The first time was also very painful and I kinda got stuck half way and when the nurse tried she got stuck at the same point. That day the nurses and Urologist tried 8 times to insert a catheter with no success. This did not give me a very good impression…and they expected me to do it alone at home twice a day. As you can imagine my urinary tract was pretty sore and I was not looking forward to any more attempts.
The next day I was scheduled for a cystoscopy to see if I had a blockage, the cystoscopy went straight into the neo bladder with no problem….The Urologist turned the monitor to me so I could watch him do it again and follow the path of the urinary tract….I too had a bend which was were I was getting stuck…
Later that day I tried again with a different catheter that turned up slightly at the end which helped me get around my bend…It is not a pleasant experience when I self cath although it has become a lot easier with time…just uncomfortable when I get to my bend…I just give it that extra push and it goes in…thankfully.
Regards
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum
Zachary, thanks, looking forward getting on my way to a fine vegetable stock! After 3 ½ months I think there is definitely less mucus than there was over the last month or so.
Leigh, welcome to the club! Regarding catheterizing – From the start I couldn’t do it. It was just way too painful to perform on myself. My Doc, my Uro or anybody always had difficulty getting one in. It’s something to do with having bends in my plumbing. I was lucky in the fact that I didn’t have any problem with blockages or too much mucus post-op, so my Doc agreed to let me go home without having to do it. I’m happy not to cath, but now after reading you do it once a week to avoid complications I’m not so sure? I would like to avoid stones at a later date. I’ll speak with my doctor next appointment about it.
I too have woke with the sensation of my penis filling with pee, but for me, this is by no means a fail-safe way of getting up on time to void. I do still have to set my alarm every two hours(until my doc tells me otherwise) although, I can now go up to three hours without leaks. It’s a hard slog this night-time activity, but at least it’s a means to an end – and we’ll hit that golden four hour mark sooner rather than later.
Best of luck with your new neo,
Karl
Winning the battle :-)
Hello Karl,
My cystectomy and neo-bladder replacement was also performed this year in September in Holland.
I too was told by my Urologist to void every two hours day and night for the duration until told otherwise.
I was also told to catherterize twice a day although I felt I was doing this for no reason as the mucus was coming away when I voided.
I had a check up last week and I explained this to my Urologist and he advised to self catherterize once a week from now on. He explained that this was important to continue to flush the bladder to prevent other health issues eg.stones forming.
During the night I wake automatically every two hours to pee, mainly with a sensation in my penis that it is filling with urine. Sometimes by the third time I wake I am so tired I say to myself just a few more minutes…just a few more minutes..and this leads to leakage which luckily I feel immediately and run to the loo. lol
Since the catheters were taken out three weeks after the operation I have not had one good night sleep as like you I have to pee every couple of hours… I am told by my Urologist this will get better over time and the need to pee every two hours will extend to 3 then 4 and so on.
It has now been seven weeks since my operation and I feel that my capacity to hold urine has increased especially in the day time.
Good luck with your neo-bladder and wishing you lots of good quality sleep…
Regards
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum
[quote author=irishguy link=topic=1419.msg10680#msg10680 date=1195548208]
But I wonder is there any relationship with diet and mucus? I would imagine that avoiding dairy products might have a good effect on mucus production.
[/quote]I asked about this very thing and no, your diet really won’t affect your intestinal mucus output. It’s not the same as nasal mucus, which diet can and does affect.
But the mucus output does decrease–my urine looks, for the most part, normal. After surgery, it looked like what Patricia said: egg drop soup. To continue the soup metaphor, it now looks like a fine vegetable stock. :)
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein
Thanks pat. It’s nice to know that mucus will die-down eventually. Luckily I haven’t had any problems with blockages due to over production of mucus. But I wonder is there any relationship with diet and mucus? I would imagine that avoiding dairy products might have a good effect on mucus production. I do know that when I’ve been physically active – my urine becomes almost like syrup.
Winning the battle :-)Exactly…its more like putting the white of an egg into water….its still there but not the chunky kind!! Pat
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