Leakage

Alan,

I just had my surgery late July; I had some bad episodes of leaking during August, September and into October; I had so much mucus in the beginning that I had to cath every 2 hours for the first two weeks...oh boy was I exhausted! Then into the 3rd week I was able to move up to 2.5 hours and after a month, was able to go 3 hours. I think it was a good 8 weeks before I was able to sleep 4 hours at a time...then in October things seemed to get much better and I went to 5 hours...and I was so happy as I so badly needed to get more sleep! Hang in there...things will improve.

I don't know if this idea will help you or not but it did for me; my doctor prescribed Levsinex, generic for Hyoscyamine...it helps calm the bladder...I was taking it twice daily but now have cut back to one a day. Also, Pat sent me a link for a wonderful stoma dressing that is made in Finland, expensive, but worth the cost to me (my insurance won't cover). My dear, lovely stoma "Rosebud" is very particular about her appearance and doesn't like any mucus to accumulate on her, if so, she gets "pissed" off so to speak and leaks. I found that this dressing keeps the wet off of her and she is very cooperative with me as long as I keep her clean. I haven't had any real problems with leaking since I began using these dressings. Now it could be a combination of the Levsinex and the dressings, I won't be certain until I stop the prescription but my doctor suggested I continue to take it for the first year.

Alan, stay strong and confidant that things will improve...truely we BC warriors have learned that patience is a virtue and one that we must embrace.

Your friend, Melodie

Yes Alan that sounds about right and you can also irrigate more then once a day if you prefer. If you're at 2 1/2 hrs and you know that now then just cath at that time or maybe 10 miniutes before that this way you won't leak at all now that you're learning the habits of your new friend. Take Care, Joe

Thanks guys, I'm up to 3 hours with a stopper fitted and could probably go beyond this. But I can't usually get much above 2 1/2 hours without a stopper before it starts leaking. I guess I'll have to continue with the stopper for the time being...and be patient as you said Pat (my doctor said the same thing!). Some days are definitely better than others so I'll just have to work out what it does and doesn't like. By the way, I'm irrigating with about 40 ml of saline once a day and drinking cranberry juice. Does that sound about right? Cheers...Alan

Pat it is 30cc's I shoot thru my cath when I irrigate sometimes I may need 2 shots and on the homepage here they have some nice info on Mr. Pouch and they can be moody took me some time to get use to this without panicking. Meaning sometimes my pressure is faster then other times and the mucous may vary etc. We all learn our tricks with my friend Herman (my pouch) named after Herman from the Munsters and using the catheters by pulling it in and out slow making sure you can get the pouch drained as much as possible. Joe

Hi Alan...yes i have the navel stoma and it and my new pouch pulled quite a few tricks on me in the beginning. The ideal is to go 2 l/2 half hours the first week..3 hrs the second ...and 4 the third....however Mr. Pouch sometimes just feels contrary to that dependent on how much you drink or even what you drink or eat or the amount of mucus in the new pouch which is plentiful in the beginning. I think Joe was very lucky to get his trained so quickly. As far as the saline solution..i was told 30cc's by my stoma nurses which i did almost every cath in the beginning and not to especially worry about it if you don't get it back out...the best way is the manipulate the catheter not try the syring at all...but its ok if it doesn't came back out..its breaking up the mucus anyway.
In the beginning the stoma nurses said i needed to drink that recommended 8 8oz of water a day.....well i never did that in my life...and when i not only leaked but became a geizer the doc said to me "how much are you drinking" to which i told him and he simply said.."Don't do that anymore"....Kind of like the old joke.. Doc it only hurts when i do this..and the doc says Don't do that anymore!!...So i just went back to my old habits of fluids...I was more thirsy than before but i drank when i was thirsy not because i thought i had to. Another thing that you will be able to associate with the longer you become buddies with you new pouch is that he will let you know what he likes or dislikes....mine does not like dairy products or caffeine....i've heard others say fresh fruits....so i do believe they all have their own little personality. In time it will adjust to being a bladder...its in rebel stage right now. You will notice in weeks and months that it will become more compliant...I used the large padded bandages for a long time and would just peel part of it back and insert a new pad after cathing as they are expensive......Now i use a regualar bandaid just to protect the stoma...once in a while i will get a leak...it hates the dyes or the barium from the CT scans...or i just get lazy and sleep to long.
Be patient...thats the key...it will all work out and everyone is a little bit different. You'll figure out the patterns. Pat

Alan I found this you may wanna read #4 in that link. take Care, Joe

www.nci.nih.gov/cancertopics/factsheet/Detection/PSA