Reactive skin & ostomy supplies: Are there always solutions?

Posted by mscheib2 @mscheib2, Feb 26 11:57am

I have to have radical cystectomy in a few weeks. I am leaning towards ileal conduit for urinary diversion. However, I have extremely reactive skin such that I am unable to wear any kind of jewelry and have to be careful about fabrics. For example, any ring--be it metal or even wood--eventually causes my skin to break out in blisters and ooze pus. In the summer I get extreme jock itch that, despite using barriers recommended by my dermatologist, sometimes requires steroids and anti-fungals to get it under control.

As a test, I wore a standard Hollister bag for three days. When I removed it, several areas of my skin had blisters. Three days later, there are still some blisters and the other affected spots are still discolored.

The doctor says that stoma nurses are excellent at finding hypoallergenic ostomy materials to accommodate "nearly every" patient. My fear, though, is the possibility that I could discover AFTER THE SURGERY that I am an outlier for whom no ostomy materials will prevent severe reactions.

Is there anyone in this group who has reactive skin like this but for whom the ostomy nurses indeed found products that don't create a reaction? And is there anyone who learned only post-surgery that no products will work? If so, how was the problem resolved?

I only get one chance to decide which urinary diversion to choose. I really don't want to mess this up. The ileal conduit otherwise makes the most sense for me--shorter surgery, faster recovery, lower complication rate, lower hospital readmittance rate, not having to self-catheterize, ability to sleep through the night, less risk of re-surgery due to narrowing stricture, and--above all--easier on myself and caregivers if I live long enough to experience cognitive decline and weak abdominal muscles. However, if there is a chance that I will be miserable every day from skin reactions to stoma supplies while I am still relatively young (66) and healthy, it won't be worth it.

Any insights from personal experience with highly reactive skin would be appreciated! I must make a final decision by March 15.

Interested in more discussions like this? Go to the Ostomy & J-Pouch Support Group.

I did read that there is a hypo allergenic appliance I would ask when you go for testing Also when I had a bout of itching under my appliance someone told me to apply Flonase to my skin and it really worked and it did not effect the appliance sticking

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Profile picture for pez01 @pez01

I did read that there is a hypo allergenic appliance I would ask when you go for testing Also when I had a bout of itching under my appliance someone told me to apply Flonase to my skin and it really worked and it did not effect the appliance sticking

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@pez01

The Flonase rip is really interesting. I had a steroid foam spray back when I was having trouble with itching. It was prescription. Flonase is also a steroid, but you can get it over the counter.

Another thing to keep in mind is a yeast infection. Coloplast Microguard is a powder that helps with that. You do have to seal it in with barrier wipe to get the appliance to stick.

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I do both fungal powder and steroids every change as per WOC RN instructions. Still bright red after a change. But with an hour break in between shower and new appliance it calms down.

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Profile picture for jaxfl @jaxfl

I do both fungal powder and steroids every change as per WOC RN instructions. Still bright red after a change. But with an hour break in between shower and new appliance it calms down.

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@jaxfl How do you pass that hour? Dressed? Partly dressed? Working? Reading? How do you guard against accidents?

My mornings are not always predictable and an hour uncovered might be difficult.

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I have the luxury of working from home currently as I struggle with walking (nivolumab side effect). I changed this morning. Closed the office door and sat there with the shower to catch exiting urine. Then I applied everything. I kept dealing with a refund issue on the phone and computer.

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Profile picture for mscheib2 @mscheib2

Thanks, everyone, for your insights. To make a long story short, late yesterday (Friday) afternoon, I got an appointment with the ostomy nurse at Cleveland Clinic (where my surgery will take place 3/20, and which is two hours from where I live) for 3/9 for patch testing specifically related to ostomy products. Though the timing is very tight, they will at least get a preliminary reading on the patch testing during pre-op on 3/13, which will help me make a final decision on 3/16 or 3/17 about which urinary diversion to have done.

Prior to getting that appointment, I requested sample materials from various producers, but they won't arrive till late next week, and they won't represent the full spectrum of possibilities. I saw a dermatologist who knew virtually nothing about ostomies and related skin issues but referred me to an allergist, hoping for an appointment early next week. But the allergist needs me to bring the full range of possible products in to create a custom patch test, and I can't acquire those on time for the appointment. The local hospital wound care department is unwilling to give me any sample materials until I have an intake appointment with them, which can't happen till the end of next week.

Given all that, I think the patch test with Cleveland Clinic on 3/9 is my best bet. Thanks again for your input!

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Thinking of you, @mscheib2

I hope your surgery went well and the WOCNs have been able to find a good solution for you!

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