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Melodie is stoned

12 years 3 weeks ago #17728 by Leigh
Dear Melodie,

Thanks for your positive attitude and humour and good luck with your op for the stone removal...

Thinking of you....


Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum

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12 years 3 weeks ago #17676 by Stephany
And be sure to ask if they'll save the stone....put it on a necklace, and you can have a reallyexpensive piece of jewelry!

Stephany in Iowa

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12 years 3 weeks ago #17622 by Melodie
Yes, in the beginning I tried the "granny" pants...and never could get used to them. I was using sanitary pads at that time but never tried the Pose product. I still wear bikini undies but the ones that are fuller in coverage and then usually a T-shirt that I can tuck down inside my pants which also helps hold my dressing in place. I use those wonderful stoma dressings made in Finland because I am too alergic to any other kind of adhesive. Those dressings are a bit pricey but are also very absorbant, like baby diapers are. Sometimes it isn't a matter that the bladder is full but that the mucus irritates the stoma enough to get my attention so that if I just replace the dressing with a clean one, things calm down and I can go back to whatever I was doing. I am hoping I can learn something that I can change in my diet so I won't continue to produce stones. I have faith that my doctor can do a good job in that area but I don't want to repeat the procedure. :)

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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12 years 4 weeks ago #17577 by Patricia
I really don't have a problem with any leakage but i also have a latex allergy and even the non-latex tapes bother my skin.....I know people who have a lower stoma (mine is at the navel) who use a poise pad stuck to their underwear over the stoma but that doesn't work for me unless i wear granny pants!!

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12 years 4 weeks ago #17575 by Alanna
Thanks for explaining that, and it worked fine for me, no leakage problems or repercussions from the surgery, to tell you the truth I think my pouch leaked less because I think the stones irritated it a bit. On another note, I have found that the Poise pads for people with incontinence are amazing if one is worried about leakage. I just discovered them and sometimes if I know I am going to be at a place where I will not have easy washroom access I use them. I buy the most absorbent poise pad they have and then cut the pads in 3 and then use that white medical tape in the 2 inch or bigger size to tape them over the stoma and to tape it onto my skin so it does not leak out below, and if I have had a leak and just press the pad it soaks it up perfectly and also has an odour absorber in the pad and it works like a charm. It has been fabulous for me, I just discovered them and I had tried regular sanitary pads a few times but they did not work, but these are amazing, not that I leak all the time but sometimes with my job I am out with clients for 3 or 4 hours and there is not easy washroom access and I don't want to feel nervous. Also in the car on car trips since I find sitting for long periods of time can kind of squish the bladder and that can cause a leak. So if you are ever worried about a leak try the poise pads with the white tape over them and you will see how great they are.

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12 years 4 weeks ago #17561 by Patricia
Yep you're right Melodie...one is thru the stoma .. the other through the skin.....
This study was done to determine whether minimally invasive endourologic management of calculi in continent reservoirs can be done effectively without compromise of urinary continence. Four patients with continent urinary diversions (1 Indiana pouch and 3 Kock pouches) were managed with trans-stomal pouchoscopic ultrasonic lithotripsy (n = 2), prone position extracorporeal shock wave lithotripsy (n = 1), or a “sandwich” combination of these (n = 1) for stone burdens up to 20 cm2. Total hospital stay ranged from one to four (mean = 2.6) days. All 4 patients were initially rendered stone free, and, with follow-up as long as twenty-five months, only 1 has had a recurrence. No patient experienced stomal leakage or other complications. This study suggests that minimally invasive endourologic management of calculi in continent urinary reservoirs can be done safely and effectively to obviate the need for more invasive percutaneous approaches or open surgery, even for some patients with large stone burdens.
So thats one study...i have a feeling it might depend on where and who you go to?
Heres one with the percutaneous surgical approach...
Not that that makes it any clearer..doh.......i'm guessing that its probably a good idea to keep using the saline solution no matter how far out of surgery you are..I'm definately guilty of not doing that. Two CT scans ago they saw urinary calculi building up on the staples...last CT scan no mention of it??? Here we go again...Pat

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