My Journey

[Susan]

Wow, that’s quite the bunch of supplies you show in the photo!  Your graph is pretty amazing – and it certainly does show that you’ve struggled over the last two years with having to do very frequent pouch changes.  Glad to read that you are quite regularly getting 6 days use now – that’s great!  Maybe I’m not reading it correctly, but does it really show that you went 8 days without changing in May of 2016?  That seems to me to be perhaps too long – risking a lot of bacteria buildup?

I have used barrier rings constantly since my surgery in October 2011.  I think only once in all these years I didn’t use a ring … I was very distracted during my pouch change, haha, and just forgot to put it on.  I didn’t have any leak, so I did think about discontinuing use of the rings, but then decided … if it ain’t broke, don’t fix it (or whatever that saying is).  I change every 5 days, and have never exceeded that time although I’ve never had any problems with leakage.

 

[GerryW]

Thanks for your feedback, Susan. Yes… the graph is accurate… I have been noting change dates on discarded wafer wrappers, and entering data on a spreadsheet in batches. Twice I got to 8 days, but when I exceed 5 days, I risk a bit of redness which clears up by the next change by using a bit of barrier spray and a Hollister ceramide-instilled barrier ring. I normally use the non-cermide rings.

PS: I run to start of failure. I do a lot of bending and lifting which could contribute to premature wafer failure.

• This reply was modified 8 years, 1 month ago by GerryW.

Kingston and the 1000 Islands

[GerryW]

January 2019… finally getting over 5 days wafer reliability thanks to ET nurse who switched me to a convex wafer last year.

Kingston and the 1000 Islands

[GerryW]

Appliance cost over last three years average $1450/yr showing recent improvement in my case with change to convex wafer. Ceramide infused wafer does appear to improve skin condition. Five to six days max before skin irritation begins. Paste under wafer resulted in reduced wear twice because of leakage.

 

Kingston and the 1000 Islands

[Nightingale]

Hi GerryW,

You graph is impressive!  Good to know that the new wafer improves skin condition.  I hope others in similar situations are getting value from your detailed update and explanation of your experience.

Thank you,

 

[GerryW]

June 2020. Now 4.5 years post-op. Learning never ends! Message to self… use extended wear wafers. For me, the small cost savings of cheaper regular wear wafers was lost in more frequent changes. Returned to extended wear products and always paying attention to sensations and skin condition around the stoma to avoid costly sores. A bit of itchiness signals time for a change. Six days max safe weartime for me.

Kingston and the 1000 Islands

[GerryW]

• Wow!! New Years Eve! 2021! The start of my 5th year post-op from bladder and prostate cancer! Looking back, I have had the privilege of supporting so many new patients starting their journeys and hopefully providing some hope and useful information. As a volunteer, BCC has provided the opportunity to hopefully save some lives and expand the reach of our mission and vision as a Community Ambassador.

Wishing all my BCC friends the best of health in 2021.

Gerry

• This reply was modified 5 years, 5 months ago by GerryW.

Kingston and the 1000 Islands

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