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Ileal Conduit

13 years 6 months ago #2160 by keeta
I had RC july /06 and ecept for first month I have had no leakage and change my pouch every 4 days.I am using holister convex 1 piece and because of a dip on my belly buton side I use eakins to fill in this dip and wear a belt for a couple of hours after changing.I use no extra adhesive of any kind , but do not get it wet until time to change.I think that making sure its completely dry around the stoma before installing and using the hair dryer to warm it up good makes it stick a little better.keep going back to your ET nurse until they get ti right. Good luck ,,,it will work
Keeta

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13 years 6 months ago #2049 by wendy
Here's some info about technical difficulties:
http://blcwebcafe.org/ilealconduits.asp

Here are a bunch of resources for ostomy supplies:
http://blcwebcafe.org/ostomyresources.asp

And the United Ostomy Ass. of America:
[url]http://www.uoaa.org [/url]

There's also an ostomy group on AOL I've heard was very helpful. I hope you get some input here, but in case you don't, please check out the above links.

Good luck to you and your father.
Wendy

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13 years 6 months ago #2044 by sundsign
My dad is now 3 weeks out from a radical cystectomy and is having the same leakage problems with his external pouch that tmsbill's mother is having. He has tried both the 1 piece and 2 piece bags--both leaked at night. His home health nurse has ordered the bag system with a convex dome that fits over the stoma and we're awaiting its arrival. I was wondering if anyone has any other tips/suggestions that will give us some hope? My parents are becoming very frustrated at this point.
Thanks.

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14 years 1 month ago #473 by kcnorthstar
Hi Carol,

I am currently scheduled for RC on may 24th. And just like you I have been on BCG treatments.
Doctors wanted me to continue with BCG, But like you I dont trust BCG treatments seeing as I have high grade cancer. (T1 G3)
And also like you the cancer has become the focus of my life and I want it gone. I will hopefully get a neobladder.
what grade was you cancer? What diversion are you getting? I wish you luck with your surgery. My email is This email address is being protected from spambots. You need JavaScript enabled to view it. if you want to chat.

KC

Age 59
DX Jan 2006 - T1B G3
RC - Neobladder June 2006

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14 years 1 month ago #472 by Helenangel
Hi KC...my name is Carol and I will do Radical Cys. surgery on May 2nd at Marin Gen. Hosp. in Greenbrae, CA. I was diag. 2003 with invasive bladder cancer. Did 13 BCG treatments, have had one large tumor removed at diag...said it had been there about 2 years probably...then 2 smaller ones after all the BCG in Jan 2006. I have a great urologist in Santa Rosa, CA...he sent me for a second opinion with a urologist in Greenbrae. He gave me all my options and told me what he is seeing in his practice. I am taking this option because the PET Scan and chest CT shows no other cancer present now. I don't want to keep worrying about this thing, don't trust BCG treatments, so will go for it now so I can live! I have a new partner and I just want enough time to have fun and make some great memories. I was a therapist in the AIDS epidemic for 20 some years. The idea of dying does not frighten me, but the idea of having this cancer be the focus of my life does. I am surrounded by love and if for whatever reason I were to not make it through the surgery...which is intense as I read online, thank goodness for the sharing sites...I would feel very complete and that my life had reached a pinnacle of being loved and loving others. I can't think of any greater accomplishment personally. I wish you love in making your decisions...I am here. Carol

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14 years 1 month ago #420 by MarvinEW
If you want to e-mail me I will tell you where I get my supplies and what we did to have NO leakage problems~ My surgery was 08/02/04  Tell your Mom everything will work out just hang in there~
Eugene

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