Nancy Horvath came across a Google message 12 years ago about a need for stoma covers for people with tracheostomies: surgically placed holes in the neck to allow breathing. Horvath had a business doing clothing alterations and decided to put her skills to use crocheting covers for these patients.
Horvath used to give them away, but she found that many people preferred to pay. Now, she charges a modest fee on her Etsy shop "fashionsforyourneck" but finds her greatest joy in giving them away to people who can't afford to buy them.
The rewards have been priceless. After a social worker contacted her about a patient who had not left her home in four years, except to see her doctor, Horvath told the woman to pick a cover from her website and sent it along with a letter telling the woman that she had to go to a store and just walk around. The phone call came shortly after, "You are an angel. ... You saved my life."
And for all of the people crafting beautiful solutions to bionic challenges, there are some who just want to unapologetically bare it all.
Charis Kirk runs the site Full Frontal Ostomy and hosts a Crohn's and inflammatory bowel disease group on Facebook, where she recently posted the message, "Will I have the GUTS to turn around and show my ostomy at the beach? I hope so." Members of the community chimed in with tales of their own attempts and posted dozens of messages of support.
But sometimes, there's just an audience of one. Video blogger Nadia Fuad shares style tips for women dealing with medical devices, but she also knows there will come a moment when all those tricks are stripped away. Though the 21-year-old comes from a culture that discourages dating until it's time to marry, she has been given some excellent advice.
"Feeling beautiful comes from within," she said. "You must have a strong sense of self-esteem almost from the beginning, because it is hard and it tests even the strongest person when it comes to body issues and confidence."
And as Fuad's mother once wisely told her, "Nadia, there is a man out there who will love you completely. I am positive if you are standing in front of him naked, he will not be looking at your ostomy."
Tips for dressing -- and undressing -- a medical device:
You don't have to break the bank on expensive clothing to fit your style and body type because you have an ostomy.
Modify pre-ostomy clothes or add an item to create a new outfit out of something old. If you don't think you have the creative touch, look online or on TV for tips and fashion tricks.
Pair a summer dress with a long-sleeved shirt underneath. If it is a short dress, I wear leggings underneath and make it into a tunic. I am half Pakistani, and I love to wear traditional salwar qameez or kurtas.
I also like to wear jeans (one size too big, to allow my pouch to fill up without restricting flow), linen pants or elastic-waisted pants that help. I usually always wear Ostomy Secrets undergarments, which help in hiding my pouch and keeping it secure to my body so I have more clothing type options.
My Doctor Knows Me Best From Behind, ostomy and IBD support group on Facebook
Use duct tape to decorate your bags! It makes them not so drab, and if they hang a little below your shirt, no one really notices! -- Carolyn G.
I get all my jeans from Motherhood Maternity. I get the kind with a full stretchy waist band, but not the kind that goes all the way up your stomach, and I get the kind that looks regular in the front but has a stretchy section on the back. They are awesome. I also always have a ton of plain tight undershirts to smooth out the bag. -- Sierra C.
I like to treat myself to inexpensive, fun, bright nail polish and cute hair accessories. Even if you're very ill, invest in a small effort to make yourself feel good about yourself. -- Sara M.
From the 30-Day Self Esteem Challenge:
For many ostomates, disguising our pouches is an almost constant concern. We worry that others will either catch a glimpse of our bags or see the outlines or both. I challenge myself to not look down to see if my pouch is noticeable when I'm in public.
I decorated one of my opaque ostomy pouches and then wore it for a week. The design was pretty simple and only took me about half an hour to complete, and the feeling I got seeing it in the mirror was good. For the first time, I saw the ostomy as something like an accessory and something uplifting.