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Scheduled for cystectomy with ileal conduit: What can I expect?

Posted by ken17 @ken17, Mar 21 2:12pm

85 yo man, good health, have a T1 high grade urothelial malignancy, not muscle invasive. Had 2 TURBT, no chemo. Scheduled for open cystectomy with ileal conduit. Anyone with similar experiences?
Ken17

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cromme50 | @cromme50 | May 14 5:35pm
In reply to @annedallas "@ken17 Hi, Ken. My hospital starts folks on Coloplast, but that simply didn't work for me---couldn't..." + (show)
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@ken17
Hi, Ken. My hospital starts folks on Coloplast, but that simply didn't work for me---couldn't get a good seal. Thought it was operator error. But the ostomy nurse tried a Hollister CeraPlus one piece bag and it worked perfectly. I can easily go 7 days, with only the appliance---no rings, barriers, powder, or skin protector.
I forgot to mention in my earlier post that through it all, I experienced no pain whatsoever. A friend who had an illiostomy at about the same time has really suffered, but this was blessedly painfree.

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@annedallas I am curious, what is the model number of your bag? I use the Hollister CeraPlus one piece #8414 but I do also use Adapt CeraRing 8815. I stick the ring to the opening where the stoma goes in before I stick the bag on my belly/stoma.

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Mentor
Susan F, Volunteer Mentor | @susanf8 | May 14 7:11pm
In reply to @ken17 "@annedallas Hi, Anne. My surgery is scheduled for May 4th. Since I live in Prescott, a..." + (show)
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@annedallas
Hi, Anne. My surgery is scheduled for May 4th. Since I live in Prescott, a 2 hour drive to Mayo. They have me down for a day of pre-ops on April 24. I will have blood and urine tests, Venous ultrasound, CT urogram and stomal therapy, which I assume is instruction for the stoma. You have given me some excellent info and ideas of what to ask the stoma person. Kirsten, my wife will be along as well. She has been terrific through this whole episode.

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@ken17 I hope your surgery went well! I've asked that this discussion be crossposted to the Ostomy group since you are one of us now 🙂

You may have already met @candywocrn , who is one of the WOCNs in Phoenix. She hosts the Mayo virtual ostomy group the first Tuesday of the month. It's a great place to connect and ask questions.
https://connect.mayoclinic.org/events/

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annedallas | @annedallas | May 15 6:52am
In reply to @cromme50 "@annedallas I am curious, what is the model number of your bag? I use the Hollister..." + (show)
Profile picture for cromme50 @cromme50

@annedallas I am curious, what is the model number of your bag? I use the Hollister CeraPlus one piece #8414 but I do also use Adapt CeraRing 8815. I stick the ring to the opening where the stoma goes in before I stick the bag on my belly/stoma.

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@cromme50 Hi. I use Hollister CeraPlus one piece #8413---it's a precut soft convex with viewing window(!). I've found it works without any skin barrier or rings (although I sometimes use barrier strips on the periphery, if my skin looks irritated; I figure they help carry some of the weight of the bag). I usually can go 7+ days, although the stoma nurses strongly advise changing sooner. They're who recommended the weekly vinegar rinse of the night bag (1/3 C vinegar, 2/3 cup water).

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cromme50 | @cromme50 | May 15 9:06am
In reply to @annedallas "@cromme50 Hi. I use Hollister CeraPlus one piece #8413---it's a precut soft convex with viewing window(!)...." + (show)
Profile picture for annedallas @annedallas

@cromme50 Hi. I use Hollister CeraPlus one piece #8413---it's a precut soft convex with viewing window(!). I've found it works without any skin barrier or rings (although I sometimes use barrier strips on the periphery, if my skin looks irritated; I figure they help carry some of the weight of the bag). I usually can go 7+ days, although the stoma nurses strongly advise changing sooner. They're who recommended the weekly vinegar rinse of the night bag (1/3 C vinegar, 2/3 cup water).

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@annedallas This is very helpful! I will compare your 8413 to my 8414. Yes on the barrier strips
for weight support. I change bags every Sunday morning but would not go any longer because the stoma gets funky looking, like it needs to be wiped.

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cromme50 | @cromme50 | May 15 9:28am

The only difference between 8413 and 8414 is the size of the pre-cut opening for the stoma.
Good to know!

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jaxfl | @jaxfl | May 22 9:26am

I use Hollister 18904 7805 11704. I have a box of precut but I am using old supplies. The glue deteriorates over time I found.

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