Melodie's After Surgery Report

Joe i'm sure you're in the ballpark considering you are not leaking. I just don't have that capacity without feeling uncomfortable and i still go 4 to 5 hrs at a time but just don't cath more than 300cc's...depends on when i drink. The guy up at Cleveland was a big beer drinker...and you can imagine why he got in the prediciment he did! I think everyone is given different instructions on the saline..i was told 30cc's and not to particulary worry if i didn't get it back out...sometimes i did other times i didn't. When i was particularly plugged i shot another 30cc's in there. Its just a memory now as Hal only balks at CT scans...either the barium or the dye but he's very cranky for a couple of days...he's doing better with the hot fudge sundaes...tho i don't do them very often. Pat

Well Pat that spooked me when I had the 800 cc's I could not imagine going for 1800 cc's that is over 2x my amount. That really bothered me as I said why I made the phone call well the wife did lol. I just seem with this 4-5 hr deal and I cath at 4 hrs that I run about 400-500 cc's and remember most times I am irrigating and I shoot 60cc's of saline in 2x so I would say I'm in the ballpark. I think with these pouches and this is just my opinion you do what you're told to do but sometimes we are just going to get a few more cc's and these pouches must stretch some. Now Herman or I'm learning is giving me little signs when it is getting time to go, as I said I try my best. Mel if your leaking as you said those pads Pat found look cool like a big bandaid with a pad in them better then what you are using. Joe

Well ok another thing to consider with Rosebud or any other pouch is to take note of your diet...I didn't catch on at first but eventually i figured out what irritated my "Hal"...and he got his name for a very specific reason...he was becoming very human and talking back to me......he doesn't like caffeine one bit.(spasms & leaking)..he's paricularly sensitive to milk products especially icecream (mucus and spasms)....and i've heard from others that citrus products irritate their bladders...so maybe make a little diary of foods and when the leaking occurs and see if there is a pattern. Joe you are very lucky....not every pouch can hold that much and you shouldn't let it stretch any further. Last time i was in to see Dr. Gill he had a male who was holding l800cc's...talk about floppy!!...He had to go in and do a revision on it.
I remember in the beginning I was sleep deprived, swore at Hal, coaxed him, sweet talked him....but it just takes time and i think thats a variable with everyone. The amount of mucus you produce in the beginning is almost outrageous and sometimes i found it hysterical that it could shoot out of that cath like it did. I did have to irrigate almost every time at first...then it got down to twice a week...once a week and now i never do it unless i've eaten a hot fudge sundae!! One of the things about the sterile solution and i do have a prescription for it is that i only get the smallest bottles and it has to be thrown out after 24 hrs.(In the beginning i didn't have to worry about that as i pretty much used up the bottle in 24 hrs) And i remember once the pharmacy gave me some new bottles and i just happened to read on them "not for injectable use"..huh?...they sent the wrong stuff...I'm glad i noticed.
And Melodie why not try those pads i found on the internet...they sound like a good deal...worth a try especially when you're out and about.
www.continentostomystore.com/Merchant2/merchant.mvc?Screen=PROD&Product_Code=MOL665000&Category_Code=MANLMESTOPORE

Pat

Pat they told me the pouchogram was just to check for any leaking.And if it was not leaking that's when i had to stay in the hospital overnight for my training on cathing myself and that was when I was at the 2 hr mark what a drag. But I do and have always drank alot. My normal output no more then 4 hrs is 300-500 cc's. Now I did mess up one day I fell asleep and I guess it was about 5 1/2 hrs and dang I put out about 800 cc's and never leaked, as a matter of fact Herman has never leaked since I got him lol. I did talk to the Uro resdident and the stoma nurse about that 800 put out and both of were amazed it didn't leak but also not to make a habit out of it stretcth wise. This amount spooked me is the reason I called Uro and stoms nurse. Honestly I stick with the program as far as the 4-5 hr deal and usually go pass 4 hours and I am always near the 400- 500 mark. But you would think with that 800 cc it would of definitely leaked out I think Dr. Malkowicz built a nice pouch even the dude who did my pouchogram commented on how good the pouch was lol he had a resident in there with him he said this to. Anywhere else people would wonder what the hell you were talking about. Well I guess so far I have been lucky with the pouch but I do have to irrigate everytime I cath because of the mucous. I will be glad when this stops as far as when you out just one less thing you have to do. Pat you told me now that after 4 yrs you don't have to irrigate that must be nice. Mel you got to get Rosebud fixed up you should not be leaking that much and they call me Dr. Pouch lol. Well take care ladies cya's soon, Joe

Pat,

I did cut back on the fluid for two days and it didn't seem to make a big difference. The doctors of course want me to drink 8 ounces 8 times a day but I don't think I get that much...although I have to also think about soup for example and possibly fruits that contain juice.

The last three days, I've only had minor leaks. Today I had to go into town and every 2 hours I would begin to feel that Rose Bud was irritated, and sure enough, she would have mucus on her, so I would pop into a rest room and cath...probably releasing 200 ccs. As far as moving the catheter around...when I'm not getting much, I turn it and move it up and down and switch off from standing to sitting; sometimes that pulls more out of the pockets, sometimes not but I give it a good try. I am trying to be more optimistic and although I sometimes get annoyed or depressed, so far, I haven't gotten upset with dear Rose Bud. Melodie

Melodie...i've gotta ask. How much fluid are you taking in? I'm 4 l/2 yrs out and during the day if i've got more than 300cc's in me my pouch pretty much lets me know to empty it...it can contract pretty good! You don't want to be holding 600 cc's in there. I think i told you what my doc said when i was leaking all the time right after cathing....he just asked me how much i was drinking...and i told him 8 8oz of water plus the other stuff...his medical answer to that was "Stop drinking so much!"
Well that worked for me...i never drank that much before so why start now.
Sometimes with the catheters the mucus will temporarily plug them and if you kind of roll the cath around and swish it back and forth a bit you'll get the stream going again. And sometimes it just plays games with you and you swear there are hiding places within or sometimes it decides to contract and just grab on to your cath..thats fun...just wait til it calms down.
Now my understanding of the pouchogram was to test the capacity of the pouch but i suppose they could tell if there were leaks also...so maybe its for both....but you obviously don't need one if you're up to holding 600 cc's..you don't want to stretch it out any further and get a floppy Rosebud.
Hang in there....Pat