Living with Both Ileostomy and Ileal Conduit: Seeking Advice

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6908
Big H
Jan 12, 2012 3:44 am
I have an ileostomy since I was 18.  Now at 72 I have been newly diagnosed with bladder cancer which quite possibly will result in radical surgery...the removal of my bladder and reconstructive surgery after proscribed Chemotherapy.
The end result may be an ileal conduit or urostomy.
I would welcome talking with an OstoMate who has both.
Hal
ilsn2u
Jan 17, 2012 2:27 am
I don't have...but I have met people at ostomy support groups who do have both, and they seem to do quite well...as well as anyone with one ostomy.  Good luck!
Posted by: GoinWithTheFlow

Hubz had a regular checkup with the oncologist on Friday (his numbers are improving), and as they were asking how he's feeling since surgery, they became curious about how he's doing so well with his ostomy, both physically and mentally. He credited doing research online, trying different things, and especially the support from this group. They were asking because they see so many patients struggling to adjust.

We described this group as folks with every kind of ostomy, some for days while others for decades, but all willing to share what's worked for them with the caveat that every individual is different.

We described the most valuable element as feeling like you're not alone in this. That really piqued their interest, and they wrote down the link. It seems they had a few people in mind that might benefit from the community and thanked us for telling them about it.

You know, we can't remember exactly who we learned about this group from, but we're grateful for it every day! Thank you all! 🌻

Big H
Jan 17, 2012 3:06 am
Thanks for responding. I would like to talk to one or two people who have both an ileostomy and a ileal conduit.
H
Generall
Jan 17, 2012 8:40 pm
I got an illeostomy in 1997 and due to damage from radiation I got a urostomy in 1999. I've had both ever since.

While it doubles the chance of leakage it was the only option that allowed me to keep working.

I'll be glad to answer any questions I can.