New Volume Record for Melodie - 900

Hi Melodie, I read alot of the post but havn't replied much because I am not very good on the computer. I read your post and noticed your taking vicodin for pain but it didn't sound like your eating much solid food. I to take pain meds and suffered a massive bleeding ulcer that almost killed me. I now never and I mean never take any pain meds unless I have something solid in my stomach. We all worry about the bladder cancer doing us in but there are other ways to go and a bleeding ulcer is noway a fun time!! I pray that your pain will resolve and you would never have to take a pain pill again(wouldn't that be great!) I wish you all the best, Rocky
P.S. I wonder why they don't make the pouches bigger so a person could sleep all night.

Linda...could you point me to some literature regarding rupture? What i have read is that the Koch pouch has the poorest record but even having said that its a very small percentage. More often the result of accumulating to much fluid is a floppy pouch. Very early on when i first had my Indiana Pouch i was not able to cath one evening and in a panic started to the hospital but with trusty mayonaisse jar and caths on hand i was able to cath in the parking lot with a 700cc volume and my poor little pouch was spasing like it was about to have a baby....I have had subsequent times when volumes were high but all of my CT scans show that the pouch is indeed not floppy and of normal size. Also with the Indiana there is a valve in place to prevent any backup to the kidneys...it may leak out the stoma on occasion...usually when i have a CT scan...it really hates the dye...........Thanks Pat

Hi, Melodie,
My guess would be that something you ate/drank acted as a diuretic...I have had that happen with my neobladder after eating watermelon, a known diuretic. You might want to make note of what you had consumed prior to something like this happening so you can find out if there are certain foods/drinks that affect you this way. The only other explanation that I can think of is if you were unable to completely empty your pouch right before going to bed. As a side note, all of us with either catherizable pouches or neobladders do need to keep in mind that urine production does not slow down during sleep the way it did with our native bladders because the hormone signals between the native bladder and kidneys no longer occur. This often means those of us that do not wake-up on our own in time to keep the pouch/neobladder under the 400-500cc recommended maximum must use an alarm system to protect our neobladder/pouch from over stretching.

Since the sensation of fullness does not awaken me until way over the recommended amount, I set an alarm for 3 hours after I go to bed and then 4 hours after that...my alarm clock lets me set two alarm times. I go longer the second shift because I have not been drinking any liquids while sleeping. I do not reduce my liquid intake in the evenings so 3 hours is a good first alarm time for me.

There are good reasons for the 400-500 recommended maximum volume for the pouch/neobladder. The more they are stretched, the more likely they are to rupture...just like a balloon is more likely to burst the more you blow it up. Also, with neobladders, continually overfilling can lead to a "floppy bag" that cannot be emptied completely without catherization. Plus, the pouch/neobladder is made from intestine that absorbs solutes back into the blood stream, the larger the pouch/neobladder is stretched the more surface area there is for the toxins in the urine to be reabsorbed into the blood stream. As one of our members likes to point out, urine is a waste product and should be disposed of promptly. It should also be noted that the 400-500cc is the same amount a normal native bladder generally holds.

Afraid I got a little carried away here, but hope you are able to discover the cause of the overfilling and thus beable to control it in the future.

My best to you,
LindaW

hi there
here is a totally random thought that could be off the wall, but I have found when I have soup, all the sodium in it makes you retain fluid and then the body stores all that fluid and then all of a sudden something kicks in and you start emptying the fluid. Maybe that is crazy but it has happened to me. I had asparagus several times and my 400 ml pouch was putting out 1000 ml, blew my mind, but asparagus is a major diuretic so I stay away from it now. I find the more fluids I consume, which you seemed to have alot of fluid in you, the less the pouch leaks, sounds crazy, but the fluid really breaks up the mucous so you don't spring a leak. You are lucky that you can have coffee of any kind, one cup and it stimulates my pouch so much I leak every time. I only drink it if I know I am not going out. Overall, every now and then my pouch has done the same thing and it is weird but I have never had anything wrong and I certainly hope the same for you, maybe others have found they all of a sudden they have a ton of output for no real reason and it has proven just a fluke as well, take care

I wasn't trying to set any new records at 1:30 a.m. today but emptied 900 ccs. Had no discomfort, fullness or pain. I have to wonder if somehow the urine wasn't backing up on the kidneys for me to put that amount out. I was very surprised.

Yesterday I had an awful backache, light headed and queasy...wondered if I was coming down with some flu bug but temp was only 97. Pain level for me was at a 7 so I was taking vicadin (2) every 4 hours as 1 is never effective for me. Consumed yesterday 2 cups coffee (decaf) chicken soup for lunch and dinner, 2 cups of peppermint tea, glass of water....cut off all liquids at 7 p.m....when I emptied my pouch thru the day the flow was sluggish so I irrigated every time...emptied every 3 hours.....at night I can sleep 4 or 5 hours so after I emptied at 10 before retiring for the night, I figured it would be 2 or 3 a.m. for the next bathroom visit....

something woke me at midnight but I had no discomfort or fullness so stayed in my snuggy, comfy bed. When I woke at 1:30 it had been 3.5 hours so I got up to find a steady flow going til I hit 800. What gets me is I had no warning or notice and my stoma dressing was only slightly damp and not soaked as I would expect it to be. At 5:30 I got up and emptied another 400. Any guesses as to what might be going on. I planned on going back to work at my office tomorrow but now am having doubts due to this latest concern. My doctor is on vacation but I have emailed him. I'd really like to know if I am doing something wrong.

In another hour I will be leaving for Seattle and won't have PC access for awhile. Pat, you or Holly can call me on my cell if you wish and I will try to get back with you. Also, Maria, I have left you my cell in a PM if you want to talk chemo or whatever. later. Melodie