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Need help from anyone living w/external pouch
Hi,
My 74-year-old father has been diagnosed with bladder cancer. It’s stage T2-3 — and it’s invaded his left ureter as well. His doctor is encouraging him to have his left kidney, ureter, and bladder removed — but has also offered him a “2nd best” treatment option of removing the kidney, ureter, and just removing part of his bladder (where the tumor is), and hoping there are no other cancer cells in his bladder — and it won’t spread. (BTW — he is NOT a candidate for an internal pouch). What’s stopping my dad from removing his entire bladder is his fear of living with an external pouch. To him, it’s like the end of the world. He feels he’ll have no quality of life. It scares/depresses the heck out of him. Are any of you living with an external pouch — and living well? Would you be amenable to speaking with my father and telling him that “it’s not so bad” — and that while it’s not your old life — it IS a life…and one worth living?
Feel free to contact me off-line at: JMLNY@aol.com
Thank you —
Jamie -
2 Replies
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Hi Jamie:home from hospital for 4 weeks now and finally getting a handle on external pouch.Biggest problem was to find a pouch that would seal on my fat belly.When they stitched up around the belly button it pulled causing a crease across the stoma which made hard to seal.With the help of the ostomy nurses we finally got one which seems to last 3-4 days before changing which is normal.Also have somewhat of a problem doing it myself cause not easy to put on looking in mirror but I’m sure with practice it will get better.Nice to sleep through the night without getting up to empty.I am somewhat disappointed that you can see the pouch under my shirt sometimes.All in all things are not to bad. Had choice of internal or external and made my decision based on reading this site and all the incontinace that seems to come with internal/uretha hookup and to have internal and cath through stoma seemed not much better. To each his own.
Hope all is well
Keith -
Hi Jamie,
I don’t have an external pouch–I had RC Surgery in Feb. and have a NeoBladder, but I can understand your father’s feelings. No option of Bladder Cancer is perfect, but the alternative is worse yet.Even with the NeoBladder, I wear Depends for leakage so my life isn’t quite what it was. I do thank God that my BC was caught early enough to have an option of bladder removal.
I had been fighting this for 5 1/2 years with mulitple TUR/BT’s and rounds and rounds of immuno-therapy.
Before going in to surgery I had an Ostomy nurse mark the site of an external opening–just in case. She asked me how I wear my clothes and where I think it would be convenient for me to have it so that it wouldn’t interfere with my clothing and so that I could care for it. Maybe if your Dad would talk to the doctor and to an Ostomy nurse, they could set his mind at ease.
This life is too good to leave it and Cancer is one of the worst ways to end it. Tell you Dad that, even thought it is a scary situation, it is sooo much better than dying of Cancer.
You and you Father are in my prayers,
Ellen
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