Need advice on managing sweat and movement with ileostomy during physical activities

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deegee
I've had an ileostomy for 20 years and have done quite well with my original system and methods (Smith and Nephew skin prep, Convatec Sur-Fit Stomahesive with tape, 10" open end pouch, and a mini pouch for water sports). Even with living several years in the hot and humid South and water skiing frequently, and white water kayaking canoeing elsewhere, I've never had to do anything special about skin care and adhesion when moisture was an issue except change the wafer every couple of days instead of every week.

Now I live in the dry West and bicycle a lot, often 80 - 100 miles several days in a row in substantial heat, and have run into wafer adhesion and skin breakdown (around the stoma) problems due to sweating and the motion of pedaling. I wonder if peri-menopausal chemistries have changed the character of my skin and sweat. My abdomen and pouch aren't in the way of my thighs, I pull up my jersey for better air flow since lycra isn't the most breathable fabric, and I'm diligent about changing my setup frequently, but still am having problems. I've quit using paste around the wafer opening because it seemed to be a conduit to spread my output outward between skin and wafer. I've also tried the more supple Hollister New Image Flextend system with a floating flange but adhesion might not be as good as my old system, and I've wondered if the floating flange causes too much movement and might actually contribute to the skin breakdown. On long hot rides when my skin is iffy I've had to change appliances several times during the day, using skin prep is extremely painful, and there's so much moisture already that getting the skin to dry prior to applying the new wafer is almost impossible. And what to do with all my soiled gear while riding a bicycle is logistically difficult.

The other issue is abrasion of the skin beyond the tape due to movement of the bag, especially the side of the bag. I've tried multiple tapes to protect the skin, from pink tape to Tagaderm to silk tape. The pink tape was the worst (doesn't breathe and caused a rash), Tagaderm felt good but held pockets of sweat (amazingly dripped and sprayed sweat everywhere when it was removed!), silk tape was marginally doable (at least it protected the skin), and several others were dismal failures.

My dermatologist prescribed some aluminum chloride (the active ingredient in antiperspirants) to apply under the skin prep, but I won't be able to really see what it can do until next summer. And I've consulted with an ET nurse but, other than the aluminum chloride, don't have any great ideas. I'd welcome any input from o'mates with similar experiences and hard-earned wisdom!!
dsmithsc91

Some interesting issues DG and frustrating to be sure. I'm not sure I have an answer for you, but I am curious about a few things.

Are the long bicycle rides something new since moving west, or have you been doing those since your time in the hot and humid south?

At what point in an 80-100 mile ride do you start to have issues with leaking?

You have tried at least a couple of different set ups, but you didn't mention if you have used a pouch with one of the elastic belts. I'm not sure if that would work for you, but it made all the difference for me. I sweat a lot, and the belt helps keep things snug and prevents leaking. Also, there are the Cymed pouches that are supposed to be good for active people. I tried them and they didn't work for me as I need convexity. They may work for you though.

If you have a trainer or rollers, this winter may be the perfect time to try some different systems, and get something dialed in for next spring/summer.

Good luck!
Dave

Oh yeah, I forgot to mention I have tried using antiperspirant before putting on the pouch and found it didn't make a difference one way or the other. As always, your results may vary.

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deegee

Dave,
Thanks for the input!

The long bicycle rides are new since moving West. I found riding in the South was a risky proposition--where I lived, there didn't seem to be much awareness of bikes, so I gave up riding during those years. But out West, they seem to be an accepted part of traffic.

As early as 40 miles, my wafer will get gummy and insecure, then around 55 miles, the actual skin breakdown will occur. Unbelievable how much sweat can hurt that denuded skin! I tend to plan my rides around bathrooms so I can check and/or change my gear.

I hadn't thought about using a belt, and you're the first to suggest it, but I will order one and give it a try. I'll also check out Cymed since I don't need anything convex.

Don't have rollers, but do have a trainer with an 80# flywheel--OMG! I'll see if I can force myself to stay on and sweat enough to give the new products a try.

Again, I appreciate the help!
DG

deegee

BTW, Dave, your photos are inspiring!

DG

dsmithsc91

Thanks for the kind words. Keep us posted as to how things go.

Cheers,
Dave

 
Words of Encouragement from Ostomy Advocates I Hollister
Immarsh
Hi,

Your athletic and activity levels are an inspiration. I've had so many medical issues through the years, that I just "gave" up. But weight gain and diabetes made me reassess my actions, and a few years ago, I decided to adopt the lifestyle of a "gym rat" at a local medically supported gym. I worked with a trainer, went from 2-3-5 to 8-pound weights. I can't do impact activities, but take balance and movement classes, tai chi, ai chi in the water, gentle pilates, and "Feldenkrais". I walk for balance and motion and finally got back into a pool (using a snorkel) and increased cardio and fitness, going from 5 strokes to 10 laps. Because it's medically supervised, I can check my blood pressure, and there's always support for other medical issues. My dream has been to get back on a real bike outside, but back and leg problems seem to have precluded that. These days, I'm more interested in keeping my fitness level up rather than having fun. It's an ongoing challenge some days just to get out of the house. So I'm really impressed and motivated by those who have maintained an active lifestyle.

To address your issue... I have a lot of skin irritation issues due to perspiration, diabetes, and pyoderma gangrenosum (Ulcerative Colitis on the skin). First of all, I'm allergic to regular tape and have tried ALL the anti-allergic products. The best one I've found is Scanpoor. It's quite expensive but is a paper-like "second skin". I use it to tape the flange tape around the circumference of the wafer. But I always carry a roll of it with me for general first aid. It stays on through daily showers, swimming, and even the hot tub. When I have a skin irritation, I cover it with the tape. You can also use it preventively on other parts of the body (I use it on my feet) or where an article of clothing might irritate me.

I hope this helps you and others.

Marsha
deegee

Marsha,
Thanks for the tip about Scanpoor, I'll sure give it a try.
And I want to encourage you on continuing your life change. It sounds like you've come a long way and can see the benefits of a healthy lifestyle. More power to you!
DG

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