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From Imperfection to Perfection

By Ellyn Mantell

My parents came in two different sizes…my father was extra large and my mother was narrow and slim. While it is not unusual for a daughter to model after her mother, I would say that my modeling was extreme. My mother not only was very weight conscious, she was very rigid and restricting of food and drink, and binging was a big part of her life, and as I found out later, unnamed bulimia. Her daily guidelines for foods to be consumed had a critique that usually ended with “remember, Ellyn,” she would repeat, “a moment to the lips, a lifetime to the hips!”

Blueberries, watermelon, and oranges were on her DO NOT EAT list since they had too much sugar. Meat, potatoes, breads were all annotated with what could just as easily have been a skull and cross bone. So as long as I followed her dictum, I would be narrow and slim like her, or so I thought. The problem was, however, that although I inherited her very narrow and slim upper body, I inherited my father’s larger and rounder lower body. Regardless of how much I tried, I was never to be lithe in my legs and hips. College not only brought the “freshman 15,” it brought anorexia and eventually, bulimia. So I lived with an eating disorder that lasted for years, and the reality of body dysmorphia that plagued me for decades. And now, as an ostomate, I am finally grateful and humbled by my beautiful body…because it is an incredibly resilient organism and I am so proud to own it!

For over two decades my strong little body fought through surgeries, hospitalizations, PICC lines, infections, abscesses and lack of bowel motility. And yet, regardless of my physical state, I would expect it to be thin and attractive, fitting into whatever garment I wanted to wear. I never questioned its strength, its ability to weather weeks in the hospitals or the most grueling of tests and procedures. It was never an issue of can I travel alone to Rochester, Minnesota to the Mayo Clinic by myself and stay for two weeks to have bowel retraining. I just wanted to be certain I could exercise, eat “normally” and not put on weight. Regardless of how many scars I had down and across my abdomen from 23 abdominal surgeries, the goal was to fit into my clothes and like what I saw on the scale. Enduring an enteroclysis study (a wire inserted down the nose to be able to see into the small intestine) I steadily focused on what I would allow myself to eat once I was finished. In retrospect, my expectation of my infirmed body to be perfect was abominable, and I would never, ever support anyone I love put that expectation on their body.

And then four years ago, I had my ileostomy, and suddenly, my now very obedient body gave way to an imperfection I was forced to acknowledge. The first time I saw my reflection in the mirror after the surgery, I was horrified. My high-output bag, which is transparent, was reaching down my short frame to my right mid-thigh. But after the shock of my appliance and pouch, I began to relax and look at the possibility that I could have a new life, free of hospitals, surgeries and worry. I began to see the beauty in my stoma, and named it, as many do. Her name is Lily because my mother, Lillian, gave me my first life, and Lily has given me my second.

No longer striving toward an unrealistic goal, I am no so proud of the ability I have to live and love my life. My little body is strong enough to advocate for others; it is strong enough to lead my support group; it is strong enough to visit those suffering in the hospital, and it is strong enough to start a grassroots movement to open our ostomy center, one of the few in New Jersey! On a personal note, I am strong enough to enjoy my beautiful family, my wonderful circle of friends and celebrate each and every day. And I have learned that perfection may never really have been a possibility for me or others, but imperfection makes me very, very happy!

Inclusive Campaign by Lingerie Retailer Puts Ostomy in the Spotlight

By Ed Pfueller, UOAA

This feels like a moment. For many in the ostomy community seeing that someone with an ostomy has been included as a model, ostomy pouch showing, in a large national retail website was groundbreaking.

The viral #AerieREAL campaign showcased a smiling ostomate alongside other body positive models living with an insulin pump, wheelchair, crutches and conditions such as fibromyalgia and cancer. The brand has long highlighted “real, authentic and unretouched women.” You can find the photos scattered over their product pages.

The model, Gaylyn Henderson, has been sharing her infectious positivity with the ostomy community for years including in a past Ostomy Awareness Day Video produced by UOAA.

Her website Gutless and Glamorous chronicles her life speaking out in support of ostomy and IBD awareness. She was selected for the campaign after submitting a video for an open call for models. Gaylyn has since become a face of the campaign in mainstream media outlets such as People, CNN and Today.

She told Today Style “Having the support of an influential brand like American Eagle to promote positive ostomy awareness has already changed lives, and I know this because of the feedback I am seeing and receiving,” “To have this opportunity is surreal! For Aerie to give me this opportunity, I’m beyond grateful and thankful they would give someone like me a shot.”

The reaction has been uplifting and positive when shared on our Facebook Page and all around the web and social media.

Shaina W This is amazing! I had an ileostomy for 2 years because of ulcerative colitis and seeing this girl model hers with no fear is so incredible. I hope this sort of thing makes it less scary for people to go through this kind of surgery when they need it. I was so scared of how having an ileostomy would change my life that I wouldn’t even consider it for a couple years even though was so sick. This girl is showing how brave and awesome she is and I hope it inspires lots of people. 😃

Avigail V Fabulous! As an ostomate, I’m thrilled to see us represented!

Megan H If you read through the comments everyone has been posting in response, it has been a dialogue game changer! People were asking all sorts of questions (which is exactly what those of us promoting ostomy awareness want and need) and expressing tons of positivity! As the mom of two young kids (a 10-year-old daughter and 7-year-old son) with ostomies, I am over the moon with this campaign, even if it’s only in viral form, which for some people, is the only way they get their information.

Many people with an ostomy reading this post have probably already had a friend or family outside the ostomy community email you a news link to these photos. And that proves that it is working, and reaching the audience it needs to.

Want to keep up that momentum? Spread ostomy awareness far and wide and invite everyone you know to celebrate World Ostomy Day this year.

Finding Confidence and Rocking Your Own Style with an Ostomy

By Tricia Hottenstein

I was packing to head out on a short vacation to Atlantic City and had all my outfits ready in my brand new suitcase. But when I went to pack my swimsuit, I started thinking about walking around at a hotel pool with my ostomy bag sticking out. Something about a hotel pool as opposed to just walking on the beach made me uneasy. I figure I don’t know the people on the beach and they’ll never see me again. But in a hotel for several days? Those people would recognize me. They’d see me dressed up for a nice dinner and know that underneath all that jewelry and makeup, there was a person with an ostomy bag glued to their stomach. A person who earlier in the day had a wet ostomy bag sticking out between their swimsuit pieces. And let’s be honest. A wet ostomy bag is a revealing ostomy bag. There’s no questioning what’s hiding inside of it. Something about that wasn’t okay with me.

Generally speaking, I feel pretty confident about my ostomy. It saved my life and I went from a love-hate relationship with it, to a genuine love of it, to more of a state of ignorance that it even exists. I’m not shy about telling people my situation and I will often show it to people who ask questions. But when it comes to swimsuits, the struggle has been a little more mental. I’ve previously tried one-piece suits and I hate them. I hate the way they pull on my bag when they get wet, the way they stick to every crevice of my body, the way I constantly check to make sure my bag isn’t leaking the second it starts to puff up. I tried bikini styles. My body is not made for a bikini, and the more often I wore it, the more sure of this I was. And then, hallelujah! The high-waisted trend hit stores, and I found a happy medium. A high-waisted bottom to cover most of my bag while still allowing it to breathe, and a cute colorful top that would hopefully draw attention away from the bag peeking out from my bottoms.

I love that I didn’t need to strip a whole wet swimsuit off in order to empty my bag, and I could easily flip it out after the pool to dry it off (which is a necessity in order to keep my sensitive skin from getting angry). The high waist also gave multiple coverage options and I could choose when and how my bag would be displayed. I could tuck it into the bottoms and feel secure, or leave it out over top of the suit if need be. I chose to secure my bag slightly flipped up inside the bottoms with just the top sticking out. Now this I could rock. And I did. But around complete strangers who would be seeing me over and over again, while never actually talking to me to understand who I was and what I’ve been through? It bothered me.

I bought a pretty cover-up. I tried on several new suits, but none worked the wonders I’d hoped they would. I even considered stopping on the way to the shore to keep trying. And then the lights of Atlantic City sparkled before me, and the tropical drinks and palm trees were calling me from the pool. So I went for it. I wore the cover-up and walked to the pool. Of course, I got stuck with several people in the elevator and noticed their eyes glancing down, and my fidgeting was more than noticeable.

I walked in the pool room and found a chair in the corner. I ordered a drink, hopped in the hot tub, and looked around. And I noticed every single other female in there looking as insecure as me. Ladies with towels draped around them the second they were out of the water. Women with tee shirts instead of swimsuits. Some just sitting on the outskirts, partially hidden by palm trees, in regular clothing. And suddenly I was okay. Forget this bag on my stomach. Every single person has something about them they don’t always love. I’ve got stretch marks I don’t worry about, and plenty of extra flab that doesn’t bother me. But for some reason I was getting caught up over this little protrusion on my stomach; a scar of a war I fought hard against and finally won. And I love this thing!

I was honestly upset with myself over the few days for the waver in my self-confidence. I got out of the hot tub, walked around to the pool, and held my head up a whole lot higher. And everyone who’s eyes glanced downward? They looked at me genuinely, some smiled. Because people who rock their scars in public have already changed perceptions. Chronic illness is becoming less and less of a taboo subject. We’re shaking the world by the shoulders. And THAT is beautiful.

Tricia Hottenstein blogs about life as a mother and living with an ostomy at stomama.com