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Did you know there is a monthly Ostomy Support Meeting?
Hi everyone!
I wanted to make sure everyone knew that there is a monthly virtual meeting for ostomy support. It is on zoom, and it's open to everyone. It is hosted by @candywocrn, one of the wonderful Mayo WOCNs.
Sometimes there are presentations, and there is always time to talk and share stories problems, and solutions.
Meetings are the first Tuesday of the month at
4:00pm to 6:00pm Arizona time
Information on how to join is here:
https://connect.mayoclinic.org/events/
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@susanf8 It would be helpful to know what the topic of discussion will be ahead of time. How can we find out?
@danaw2026 We don't have any guest presenters this time. It is an open discussion, so whatever people bring up to talk about is what we talk about. @candywocrn, who is a WOCN with Mayo Clinic hosts the meeting and can offer a lot of guidance. Is there any particular topic you would like to bring to the meeting?
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1 ReactionThe open discussion on August 4th was well attended - people shared their stories, and tips, and as always, @candywocrn had helpful advice! Stay tuned, I'll get the agenda from Candy about a week before the next meeting on September 1, 2026.
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2 ReactionsHi Everyone! September's meeting will be on Tuesday September 1st. We will have a guest from Stoma Genie to give us a presentation on their product, and then have open discussion.
https://stomagienics.com/
Tue, Sep 1, 2026
4:00pm to 6:00pm Arizona Time
Join Zoom Meeting here
https://mchealth.zoom.us/j/99659580974
Meeting ID: 996 5958 0
Is the monthly ostomy support group meeting geared more to colostomy or urostomy or both?
@vbdad24x7 we have people with urostomies, colostomies and ileostomies in the group. Some people have two stomas, some have a j-pouch. Some have temporary ostomies. It really depends on who shows up.
This particular presentation is on a product that is probably more oriented to a colostomy or an ileostomy, but might have some utility for someone with a urostomy. That would just be the first half hour or so, and the rest of the time will be open discussion and questions.
What type of ostomy do you have?
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1 Reaction@susanf8 ileal conduit and urostomy from bladder cancer surgery
@vbdad24x7 I hope you will join us! Some issues are universal, but people also bring in questions and experiences specific to their type of ostomy. The meeting is hosted by @candywocrn who is a Mayo Clinic WOCN.
@susanf8 - by the way, appologies for any formatting, I hope it is pretty readable.
September's meeting featured a speaker from
https://stomagienics.com/
• Theresa from Stoma Genie was the presenter
• Theresa's father had a urostomy and was unable to conduct a controlled clean pouch change, this product was invented to help with that
• StomaGenie and Replacement cartridges
○ covered by Medicare, VA, most private insurances
○ Available from medical suppliers (like Edgepark and Byram)
• SecurPress
○ help press an ostomy baseplate or wafer evenly against the skin for a strong seal is available from Amazon
• Handsfree clamp that holds the StomaGenie
○ Available from Amazon
• Samples are available by emailing samples@stomagienics.com
Candy mentioned that Stoma Genie is helpful if you need to do something time consuming to the skin around your stoma and mentioned a product for irritated skin called https://domeboro.com/ that has to be on the skin for 10 minutes
Open Discussion topics:
Itching under the wafer and around the wafer - people use calamine lotion, and fungal powder.
Odor was also a topic of discussion
Candy suggested putting a breath mint in bag - Altoids dissolves the best.
M9 - lubricating drops
Little sprays that are pretty powerful made by Revel - lubricant deodorant https://revelostomy.com/