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[quote author=Patricia link=topic=1419.msg10631#msg10631 date=1195491244]
the consistency of egg drop soup
[/quote]Hi pat,
could you be more specific regarding the above. I’m not familar with egg drop soup. Do you mean that the mucus in the urine becomes more loose?
Thanks,
Karl
Winning the battle :-)GuestNovember 19, 2007 at 3:54 pmYep it will always be there but rest assured it will eventually realize its new role in life and only produce the consistency of egg drop soup after 6 months or so. ::)
PatGuestNovember 19, 2007 at 12:14 pmHi Betsy,
I have a neobladder too and I also freak out how much mucus there is at times also. Sometimes it is hard to believe. I am under the impression it will always be there.
God Bless, HollyGuestNovember 19, 2007 at 10:32 amHi Irishguy!
My consultant seemed quite happy with my current voiding pattern when I saw him last so I’m not too worried. What is concerning is the sheer amount of ‘gunk’ I’m passing out to put it politely! I understand that the new bladder will still act as bowel (for that is what it is) for a while but no-one seems to know for how long this will happen. Even my consultant did not seem too worried about this. Anyone else have this issue?Thanks warren,
It does make sense when you put it like that. I have noticed lately that my night output has peaked at three hours. Once i went for almost five hours(and didn’t leak) when I forgot to set my alarm. Can’t wait until I average every four hours during the night, so as to get some quality sleep!
Winning the battle :-)[quote author=irishguy link=topic=1419.msg10456#msg10456 date=1195288537]
What I don’t understand is – why empty every 2 ½ hours during the day and then every 4 hours at night?[/quote]I think I might know the answer to that. Most people’s urine output is less at night, not only because we’re drinking less while we sleep, but also, because as part of the body’s natural rhythm, antidiuretic hormones is secreted at higher levels at night to make the urine more concentrated at night. There’s a lot of things that go on during sleep hormonally that are different from daytime. The antidiuretic hormone part is probably important to the integrity of sleep, but who know. It may serve some other purpose as well.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
PediatricianGuestNovember 17, 2007 at 9:51 pmI hope some other neo’s respond because i’m curious to. I think a lot depends on the institution and whether they have a team of stoma nurses or not as to what you get or don’t get?…The Stoma team at the Cleveland Clinic has their own building and clinic and they are extremely thorough…I had a measuring plastic thingy measured in cc’s…a syringe and bottle and saline solution to irrigate on a regular basis…they sent me home with l00’s of catheters and lube and bandages and instructions. In fact they watched over me like a hawk when i was learning to cath to make sure i was doing it right and taught me a few little tricks to complete emptying. So now at this point and time i only cath about 4 times a day and i sleep thru the night. I do not drink anymore or less than i did before my surgery. Sometimes i still measure but never bother when i’m out obviously..it gave me a good gauge as to what i was putting in and what was coming out in the beginning and my usual output is between 250cc’s and 400cc’s…morning is higher at 500 to 600 cc’s.
So obviously its a whole different ballgame betweeen the neo’s and the Indiana’s.
And the score is?????????????? :D PatGuestNovember 17, 2007 at 6:01 pmOh Pat – I am so glad you have brought this up :) I have wondered what the deal is about measuring…
I got my neo on 3/13 and when I went home I wasn’t told to measure anything.3 weeks later when my cath and all tubes were out – I wasn’t told to measure nor was I taught to cath. I prayed it would work and it has.
Within 1.5 weeks of my tubes/cath coming out – I had a port put in my chest and chemo started. I was given lots of diuretics with chemo so I basically lived in “pull ups” til August – not because I had no control but for many reasons…cisplatin made my feet hurt bad plus my nerve damage in right leg was bad. I threw up everyday the last 2 month of chemo so that hindered alot too. Then I really gained continence fast.
At my 3 month check – they did pyleogram sp? and asked how it was going. Same at the 6 month. I couldn’t tell you how much mine holds – and they never ask either. And I have wondered the whys of it all!Currently – I seem to go as often as I did before the bc. At night tho I am up 2-4 times to go – never an alarm clock either. I just get a cramp that wakes me up and I go.
Heaven help me – now I am curious!
God bless, HollyGuestNovember 17, 2007 at 5:29 pmJust curious …holly how often were you told to void? I know with the Indiana Pouch its a process of emptying every 2 l/2 hrs for the first week, then every 3 hours the second week, and up to 4hrs the third week to gradually stretch the bladder. Night time it gets better after about a year where it generally leaves you alone for 6 to 8 hrs assuming you limit your liquid intake in the evening. Is there the same training for the neo? And is it different in the UK?
I can’t imagine the sleep deprivation!!….PatGuestNovember 17, 2007 at 3:11 pmHi Betsy,
Welcome! I have a neobladder. Mine was done in March at Mayo’s in Minnesota with the Da Vinci robotics. I did 4 months chemo after the RC so it took a while to get continence issues under control. I have never had to cath – thank goodness. Over all I am very very pleased with mine. Day time is 100% good and nights – I only leak a little maybe every 6 or 7 weeks. Feels better than I hoped for :)
Glad you found us..ask anything, or pm if you’d like.
God Bless, HollyHi Betsy Mae,
I also had my operation in August. My doc informed me that I should empty my new neo every two hours day and night, for up to six months. This was to insure that the new bladder would not be over stretched and not under too much strain. I’m no expert, but I’m not sure you should holding for so long at this early stage? Maybe you should talk to your doctor about it – just in case.
Good luck,
Karl.
Winning the battle :-)GuestNovember 17, 2007 at 1:38 pmHi!
I had a neobladder in August of this year. Following surgery I had horrendous complications with a klebsiella infection which made me feel worse than the actual surgery did! Anyway, 4 weeks since my last hospital discharge I seem to be ok. I do not seem able to void urine without a catheter but as I am managing to last between 4-5 hours depending on what I drink I suppose this is not too bad. I can occasionally last all night too! I do get a ‘stomach ache’ which lets me know I need to empty the neobladder. My best volume has been 450ml, which considering I found out pre-op that my bladder capacity was only 375ml,so I feel I have a better quality of life in many ways as I’m no longer dashing to the loo all the time. Wo9ulod be interested to hear about other women and their neobladder experiences.Hi Andi,
Thanks for sharing your experience, it helps me to understand my new neo a little better. I too have the pain in my side when my neo becomes close to full. But I’ve never had it at night. It seems to be fading over time too. What I don’t understand is – why empty every 2 ½ hours during the day and then every 4 hours at night?
Karl
Winning the battle :-)So I have a 12 month old neobladder, and over the first 8 months had obvious pain in my right side which we felt was related to reflux up into the right ureter and kidney. I notced this as my bladder filled to around 400mls (about 2-2 1/2 hours during the day) and this was when I voided. I used to reliably wake with this pain in the night, too, so I stopped setting the alarm at night. My surgeon said he wasn’t concerned at that point about damaging the neobladder, as I had virtually no post-voiding residual on catheterizing and also on the funny little machine they used to measure this at the clinic.
However, over the last 4 or 5 months, I have noticed my capacity increasing a lot with no obvious increase in pain or fullness sensation. I have peeed out up to 750mls. I spoke to my surgeon and we felt that this may lead on to the whole baggy bladder thing, so I now went and bought a watch which has a count-down timer (I set this at 2:15), which launches into a stopwatch, to tell me how far past the 2:15 I have gone. I try to keep intervals around 2:30, to keep volumes down. I have also gone back to setting a timer at 4 hours in the night. My understanding is that keep the bladder healthy it needs to not be overstretched, and also to be emptied completely. this sometimes takes quite a while, especially in the night.
Also, a lot of people get colonized with gut type bacteria, and I think the best way to deal with this is to keep the neobladder flushed well (drink lots). I have ended up on long term low dose antibiotics, but this is not ideal. I may ask to come off them in a few more months.
I am not sure how useful this is, but this has been my experience. I guess it would be interesting to hear from people with longer term neobladders with regard to problems, and how they kept their neos healthy.
Best wishes,
Andy.
Hi Half Irish Pat!
Thanks for the info. My doc sent me home from hosiptal with the instruction to empty every two hours day and night for up to six months. This I generally stay within, but lately have felt a noticeable difference in capacity. It feels like I’m getting close to optimal so I guess I should be careful.
Thanks,
Karl
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