Ostomy Supplies by an Ostomate – Keys to Finding the Right Fit – Part Two

Welcome to Part 2 of Keys to Finding the Right Fit by an Ostomate! 

Part one was published on January 28th, 2022, so feel free to give that a read first if you haven’t already.

This article will get a little personal, but I’m an open book!  Please remember these are my experiences and that I’m not a nurse.

I’ve had my colostomy for four years and some trials and tribulations.  My biggest challenge was skin health.  Skin health is closely linked to fit because if you aren’t wearing the right brand and size, your skin will react.

At one point, my skin was so bad that the infection continued into my stoma.  My stoma is flat and retracts, so the infection migrated.  I couldn’t move without pain, and this type of pain is only appreciated by an Ostomate who has been in a similar predicament.  Here are some things that helped me sort out the why and the how-to avoid this in future.

WHO YA GONNA CALL?

I made an appointment with my stoma nurse.  She took one look at me and validated my pain.  She explained I was right in making an appointment to see her, which would help me figure things out.  A couple of days prior, I visited the emergency room because I was worried it was more than she or I could handle. The hospital doctors were kind, but no wound care nurses on staff since it was a weekend.  Don’t even get me started about hospital weekend shifts!!  They quickly prescribed medication to help with my pain and then performed a biopsy.  I have my colostomy due to cancer, so we were all worried.  I found out a few days later it was negative and a staph infection.

My nurse and I kept it simple.  Process of elimination was the only way we’d sort this out, and it wasn’t going to happen overnight.  She applied Marathon Liquid Skin Protectant on my skin to help it heal.  I’m sure I made a joke that it looked like a glow stick used at a glow-in-the-dark party!  The goal was to keep the parastomal skin as clean and healthy as possible, using as little as possible.  I have a colostomy, so this is slightly different from an ileostomy or urostomy.  The adhesive of the pouch wasn’t the issue; it was more about how the stool was exiting, the size opening, and how I was cleaning.  Like many ostomates who wear a drainable, I was VERY conscious of odour and liked my pouch to be as clean as possible. However, my nurse revealed that I was over rinsing and using too much odour eliminator solution.  When I’d rinse, I swooshed liquid and solution up, which meant the dampness stayed in and around my stoma.  The two together created a fungal infection and possibly a chemical burn. I was glad we sorted the why, but how could I stay as clean and odour-free, which were two of my top three priorities?

KEYS TO GETTING FIT  RIGHT: BE OPEN AND TRANSPARENT TO SOLVE THE ISSUE

After remeasuring my stoma standing up and sitting down, the opening size was adjusted but not by a lot. I went into a deeper convexity to help direct the stool into a CLOSED pouch.  I was so nervous about changing to the closed option as I had been instructed previously to get the stool out and stay clean. My options were to listen and try (which I was reluctant to do once) or continue as I was and suffer. So I listened. I’m happy I did because things got a lot better!

My old skin prep routine involved barrier spray, adhesive glue, a barrier ring, paste and a drainable one piece.  Now all I wear is the pouch!!!!  Taking away all the accessories and doing a complete change when the pouch is full is how I’ve gotten better.  With my type of stoma, I tried so hard to make a dam-type effect with rings and paste, but it wasn’t enough.  My stoma retracted, but the accessories didn’t, so stool was slowly sneaking under, causing skin irritation and ultimately the stoma infection.  Wearing a 2-piece isn’t an option for me since my stoma retracts back, the same idea as the rings; the stool will escape.  However, the 1-piece moves correctly as my stoma retracts, like your chest as you breathe in and out.

THINGS WILL GET BETTER

Today I massage stool down as needed since it likes to hang up top and change my pouch when full enough.

Wearing a pouch with some convexity makes this process easier, whereas a flat pouch would likely leak since it has no U shape.  My colostomy isn’t crazy active. I average one pouch a day. I’m now wearing a soft convexity as I’ve lost some weight. Weight loss/gain can be a factor with fit, so be sure to measure every periodically.

I wear a drainable like a closed because the Coloplast Sensura Mio has the velcro fold option, which I adore.  I treat it the same as if it were closed.  It’s another good option for Ostomates who need to release gas but don’t want to empty.  I do my change when sitting, using Brava adhesive remover spray to take it off. I wipe the area clean and then follow with an adhesive wipe before applying my pouch. It takes me no time and is easy to do when out with friends at a restaurant, and no odour, which you know is a top 3 for me. I have a diaper Genie for my waste bags and carry-on. No bathroom odour spray for needed for me, just my guests!

I wish I’d listened earlier about daily changes, but without these struggles, I wouldn’t have the comparison I do.  Many people think the daily change is more expensive, which is why they don’t try it.  I’ve done my math, and this is less expensive for me (coverage or not).

Closed pouches are often less expensive than a drainable, and when I use a drainable, it’s pretty much the same cost.  Another misconception is that skin reacts from the off and on process.  I always use adhesive remover spray as it would be too painful for me without it.  I don’t have a pouch on long enough for a bad leak to happen; that’s the best part.  I don’t have to use accessories as I did before.  As a result, my skin is clean and super happy.  We wouldn’t leave a soiled diaper on a baby for a long time so think of it that way for some perspective.  When a diaper is left on too long, a rash happens and needs to be treated.  When some skin irritation pops up, I use a generic brand of Flonase on my skin.  Simply spray and rub in, let dry and apply my pouch.  Flonase helps so many ostomates; it’s a bit of a secret gem.  Marathon and Calamine lotion could also help with skin irritation.

It’s a good feeling once you find your right brand and fit.  The more confident you are in how your supplies fit, the better you’ll feel.  I try to remember that others may learn from my story and follow my lead. If you show those around you confidence and pride, that’s how they’ll react.  To me, this is how to increase acceptance and decrease stigmas.

XOXO

Carly

***If you have questions and would like to speak with Carly directly (in French or English), please feel free to call Inner Good at 1.844.466.3939 or reach her on Instagram @ostomateandthecity or on her website.