Indiana pouch leakage options--question

Hello!
Good to meet you, and thanks for the response. I wasn't sure my post was actually "out there" since I could not see it anywhere as of yesterday.

You mentioned the mucus--that amount varies. More right at first in the morning and then later in the evening when I cut back on fluids. In between, though, not a lot.

Surgeon was Richard Foster. He's absolutely excellent, and the surgery and post-op stay went extremely well. But like you, I get conflicting advice between the surgeon and the nurses. Nurses say drink that 64 plus per day--surgeon says drink what you usually drink. Nurses say irrigate more than once a day if you drink less than 64; surgeon says irrigate once a day only. Nurses say work hard and reposition to make sure pouch is drained each time. Surgeon says it's not that large a concern and that it is permissible to use gentle abdominal pressure and/or bearing down to help fully empty, as well as to aid in dislodging/pushing through any mucus that might semi-clog that catheter tip.

So of course I've tried all these things. I'm very fortunate that except for 4 hours a week, I work exclusively at home. That has been a huge blessing. BUT--when I'm out and about, or at work, or working out, or standing in front of people and running a meeting--the leakage is an issue of concern. At this point, I would not dream of leaving the house without using some sort of appliance so that if and when that leak comes, it's contained. I really don't have a lot of restroom time when I work on site--emptying fully is usually a slow 12-15 minute process with around 300 cc per. And it's not like I leak tons--but it is enough that it comes quickly and therefore soaks through any standard "dressing" that I've found; hence the "Little Ones" urostomy bag.

I've read about fistulas and hope that is not an issue, but I just had my first routine post-op CT last week, so we'll see how that turns out.

I suppose most of this may be just venting. If I could find some dressing method that would contain the leaks, I'd stop with the flange/bag routine in a heartbeat. At the moment, though, it seem the only thing I can do unless there is something else out there that more experienced post-op people know about.

Thanks for taking the time to read and respond.

Wow..IU is a major center for Indiana Pouches. Who was your surgeon?
Firstly how much fluid are you drinking? And what is your output at 3 hrs?
I also have an Indiana and the stoma nurses get a little nuts about drinking 8 8oz of water a day plus...i tried to do that and was squirting fluid on the hour. My doctor asked me how much was i drinking and have i always drunk that much...which was .NO. He said to drink when you're thirsty. That solved my problem and my pouch was trained to 4 hrs within a month and eventually would go overnight if i held my fluids down after dinner. My pouch holds about 700 cc's. and really thats the limit it should hold and i rarely let it go that far. Usually my output at 4to5 hrs is 250 to 400cc's.
Sometimes a fistula can cause these problems but i'm assuming your surgeon has ruled out any underlying causes?
And just a thought...at 7 months you're still producing a lot of mucus which can plug up the catheter and you may not be completely emptying? Do you use sterile saline to break it up?
pat

Greetings.
New here. Received my Indiana pouch at IU Med Center (Indiana) in July 2010--over 7 months ago. So here's my issue.

Despite all the "training" over these past 7 months, my pouch still won't hold more than three hours--less if fluid intake is up. In order to ever sleep more than three hours in a row, I've taken to using a pediatric flange and tiny urostomy bag at night; lately, I've tended to use that flange and little drainable bag almost all the time. Why? So I don't leak at work--so I don't leak while exercising--so I don't leak at night--etc., etc. I've used all manner of pads, dressings, bandaids, AmPatches,--none of them will hold the leaks. When the urine comes, it's always more than any sort of dressing can handle--or the leak comes at a time when I can't just get up and go to the restroom. At least, with the pediatric urostomy bag, any leakage goes into that drainable pouch and not onto underwear, clothes, etc.

Trust me--I'm thrilled the Indiana pouch option was available for the cancer; I don't mean to come across as ungrateful or too complaintive. But it is so frustrating to still be having this leak issue and to resort to using urostomy bags in order to make sure the leaks don't get out of control.

So--my question--is there ANY other method or idea I can try? Given that this particular surgery was meant to avoid using an appliance, it would be nice not to have to use one.