Marshmallows and paper towel hats: tips for anytime appliance changes

The main room of our condo during a recent vacation with Doug’s parents looked a bit like an outdoor gear store. Snowboards and skis of all sorts lined the wall and a plethora of boots sat in front of the fireplace. Closets, dressers and duffel bags overflowed with Capilene, fleece and Gore-tex clothing. During a week in the mountains near Winter Park, Colorado, we took part in two days of biathlon racing, and one day each of skate skiing, snowboarding and telemark skiing. I also managed to squeeze in some hiking and sketching in my nature journal in Rocky Mountain National Park. With so many activities on the schedule–some of which required an early start–it was hard to know when to fit in my appliance changes.

Our vacation included to days of biathlon racing.
Our vacation included two days of biathlon racing. I would rather change my appliance after dinner and face the biggest volcano of ostomy output than get up at 4 a.m. to change my appliance before a race.
I also put on my telemark skis after not using them for eight years (and then could barely walk for the next week.) I am trying to relearn this skill so I can use my tele skills to get out to some Colorado ski huts next winter. Stay tuned for a post in 2016 about changing your appliance in a communal ski hut.
I also put on my telemark skis after not using them for eight years (and then could barely walk for the next week.) I am trying to relearn this skill so I can use it to take trips to Colorado ski huts next winter. Stay tuned for a post in 2016 about changing your appliance in a communal ski hut.
Since I could barely walk after my day of telemark skiing, I opted to sit down and sketch in my nature journal for one day of the trip.
Since I could barely walk after my day of tele skiing, I opted to sit down and sketch in my nature journal for one day during the trip.
My snowboard was feeling left out, so I took it out for one day on the slopes. My legs were so tired from days of non-stop winter sports, that I completely lost the ability to make my board turn after a few runs. Note to self-- sliding down the entire front side of the Winter Park Resort on your heel edge is not much fun. Best to take a rest day instead.
My snowboard was feeling left out, so I took it out for one day on the slopes. My legs were so tired from days of non-stop winter sports, that I completely lost the ability to make my board turn after a few runs. Note to self– sliding down the entire front side of the Winter Park Resort on your heel edge is not much fun. Best to take a rest day instead.

Unfortunately, appliance changes aren’t that quick for me. Due to pretty acidic ileostomy output, I have to protect my skin with several layers of products. Stoma powder, skin prep, Duoderm, Eakin Seals and paste–I use them all. My changes usually take at least 30 minutes–sometimes longer.  Even when I use all those products, my output chomps through them like a piranha if I try to go longer than three or four days, and I end up with very raw and painful skin.

The the saying "simple is better" does not apply to my appliance changes. I need a lot of layers of products to protect my skin. Putting on all this stuff takes a lot of time and gives my stoma ample chances to expel output everywhere.
The saying “simple is better” does not apply to my appliance changes. I need a lot of layers of products to protect my skin. Putting on all this stuff takes a lot of time and gives my stoma ample chances to expel output everywhere.

Those with an ileostomy know that it can be pretty hard (if not impossible) to find even a short chunk of time when your stoma isn’t pooping. Usually I try to change my appliance in the morning as that is when my stoma is the most quiet. However, on a busy ski vacation (or any time with a full schedule) that plan doesn’t always work. If I already have to wake up at 5 a.m. to make it to a race on time or catch first tracks in powder, it is hard to get up even earlier to fit in an appliance change. Also, I don’t like worrying about when I am eating and how it will impact my appliance swap. If I want to head out to a restaurant for a post-ski meal later in the evening, I go for it even if I know it will be harder to change in the morning due to the extra output. In some cases I will even switch out appliances in the evening right after a big dinner (gulp!) if that is the best way to fit it into my schedule.

If you are wondering if I have a particularly quiet and cooperative stoma, the answer is no. My stoma is a non-stop workhorse and churns out output 24/7.  Fortunately, I have some tricks that allow me to change at any time of the day even when my stoma is active.

Trick number one: Marshmallows
My stoma nurse first let me in on this little secret. If I eat four to six regular-sized marshmallows about 15 minutes before a change, my stoma will usually stop outputting for about 30 minutes–just enough time to finish getting my appliance on.  I can’t make any promises that it will work for you, but I recommend giving it a try. It is the only time you will get to eat marshmallows for health reasons. I have no idea why the very first individual to discover this trick was dining on marshmallows right before changing their appliance, but I sure am thankful for their sweet tooth!

This photo isn't from our winter vacation but does show my love for marshmallows. They are best over a campfire, but I will happily eat them cold before a 5 a.m. appliance change.
This photo isn’t from our winter vacation but does show my love for marshmallows. They are most delicious when toasted over a campfire, but I will happily eat them cold before an early morning appliance change.

Trick number two: Make a hat for your stoma
When I first got my ostomy, I absolutely dreaded changes. They were tear-filled endeavors wrought with frustration because I couldn’t get my barrier ring and wafer on without my stoma pooping all over the place and ruining the adhesives. I turned to the internet for ideas to solve this problem and discovered a post on a forum that suggested wrapping the tip of my stoma with a strip of paper towel. I gave it a try and couldn’t believe how well it worked! Plus I liked that it made my stoma look like it was wearing a cute hat.

Four years later, and I still use this method during every single change. As my stoma chugs out stool, the little hat fills up. When it has reached maximum carrying capacity, I simply pop it off, toss it in the trash can next to me, and wrap on another. Along with collecting output, the stoma hat frees up my hands to put on powder, barrier film, and all the other products that I use to protect my parastomal skin. It also keeps the base of my stoma dry as it absorbs some of the moisture from the mucous membrane.

This little trick allows me to change whenever I need to as it doesn’t matter if my stoma releases output; the hat is always there to catch it. Occasionally, if my output is profuse and watery during a change, the technique doesn’t work as well. However it is better than nothing, and if my output is watery, sometimes gulping down a few extra marshmallows will temporarily slow down the flow until I can finish the change.

I realize that making a hat for a flush stoma won’t work very well, so this trick works best if your ostomy protrudes from your belly a bit.

The only supplies needed for a stoma hat are one-inch-wide strips of paper towel.
The only supplies needed for a stoma hat are one-inch-wide strips of paper towel.
JWilbur my stoma models a poo-catching paper towel hat. To make one, simply wind the paper towel strip around the top of our stoma and you are set to go.
My stoma, Wilbur, models a stylish poo-catching paper towel hat. To make one, simply wind the paper towel strip around the top of your stoma and you are set to go.
It is easy to slid your wafer right over the stoma when it is wearing a hat. Note that under the wafer, I have already put on my Eakin ring and other materials.
It is easy to slide your wafer right over the stoma when it is wearing a hat. Note that under the wafer, I have already put on my Eakin ring and other materials. If you are using a one-piece appliance, you can still use the hat method. Just pop the hat off right before you put your appliance over your stoma.
All pouched up with no mess at all. For those who are wondering about the tape job, I love Convatec wafers but the tape irritates my skin. I cut it off and add my own strips of Medipore tape.
All pouched up with no mess at all. For those who are wondering about the tape job, I love Convatec Durahesive wafers, but the tape irritates my skin. I cut it off and add my own strips of  3M Medipore tape. This combo adheres well through showering, swimming, and all sorts of sweat-inducing sports.

If you feel your ostomy controls your life and confines you to a certain schedule, keep searching and experimenting to find solutions. I’d never have guessed that something as simple as marshmallows and paper towel “hats” would give me the freedom to live with my ostomy on my terms rather than the whims of my stoma.

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