I Just Need a Moment- Taking a Break from the Expectations of Ostomy Life

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By Tricia Hottenstein

The problem with being strong is that people expect you to always be strong. When your body has been put through so much, people expect it to willingly fight through anything. After life hands you a few too many lemons, you’re expected to just make an extra-large lemonade. The problem is, sometimes I can’t be strong. Sometimes I just don’t want to be.

When I get a new diagnosis or the old one flares up, I don’t always react with immediate strength. When I wake up to a leak or suffer through an obstruction, I don’t always react with immediate strength. When I need to call off work or cancel with friends and feel like I’m letting people down, I don’t always react with immediate strength. And sometimes, my lack of strength is why I need to cancel. Because it is damn exhausting sometimes. Dealing with life, dealing with an ostomy. Dealing with doctors and tests and medicine. With random pain or nausea. With what seems like a constant cycle of bad news after the last bad news. Dealing with an independent and stubborn 5-year-old when I’m not at my best. It’s exhausting.

And I just don’t want to be strong. I want to slump down in my seat and sob. I want to be needy, and helped. Most of the time, I feel like the benefit to

The author gets some much-needed self-care that is so important in life with an ostomy or chronic disease.

this life is that it made me a better person, a better friend. I can support someone through their hard moments because I’ve been through enough of my own. I may not be the most compassionate person in the world, but I will be there. For even an acquaintance. I will help anyone I can, however, I can. But the downfall is that sometimes I want to be the person on the other end. I give my strength to so many other people, yet for the most part, I feel I rely mostly on my own. And most of the time, I am strong enough for that to be possible.

Although I always think I’ve had this strength, having an ostomy made it necessary to rely on myself. By the time I had the surgery, I learned what I could and couldn’t eat. I had to self-navigate my triggers and try to make sense out of them. Oftentimes, I needed to coordinate doctors with specialists and be competent enough to fill in the blanks of my medical history. Mainly, I just had to deal. With the embarrassment, the unpredictability, and the often crippling pain. And then I had surgery, and had to be strong all over again. I had to relearn what I could and couldn’t eat and figure out all the tricks for keeping my ostomy happy. The learning curve was a tough one. Sure, there are support groups. But this is also an individual journey and I needed to be self-sufficient and strong.

But mid-meltdown? I am not. I want to be weak. I need to take a moment to feel sorry for myself. I do not want to hear about how I can beat anything because my body has already tackled everything else. I need to cry and process all the thoughts swirling in my head. I need to feel frustrated at the nonstop barrage of crap being thrown at me. I need to let my shoulders fall and my eyes sink. I need someone to be there for me the way I hope I would be there for them. I just need a moment. Because honestly, I AM strong. And I am damn proud of it. I try to be positive and handle things with composure and as much grace as my body (and personality) can put forth. And once I stop feeling sorry for myself, I will stand up and shake off and go forward and tackle everything on my plate with a vengeance.

I just need a moment.

More on Emotional Health

Body Image and the Ostomate

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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!

Beauty and the Ostomy: Total Skin Health

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Skin Hydration Beauty Tips for Living with an Ileostomy

BY ELLYN MANTELL

As a self-avowed makeup and skin care junkie, I strongly believe that looking good is greatly related to feeling good. In fact, makeup and attention to my skin has helped me to get through the years of misery that led to my eventual ileostomy four years ago. As I reflect back, I remember asking my husband to search my handbag for lip gloss when visiting me in the hospital with peritonitis, as soon as I was brought into my room post-surgeries and the like. As soon as I felt well enough to walk around my house, I was applying my skin care regimen and blush, so everyone knew I was fighting my way back. My suitcase, always at the ready for another surgery, contained my stash of the perfect lip color to brighten my pale face for visitors, including my physicians making early morning rounds. Somewhere along the way, I recognized that my ability to heal had a great deal to do with the colorful smile I could put on my face!

It is my belief that although we ostomates can live a very full and fulfilling life, some things will just take a little extra attention, and looking our best may be one of those areas. With that in mind, I am planning on contributing information about beauty and fashion, and have named my blog/post/column Beauty and the Ostomy! Look for it in the next Phoenix Ostomy Magazine. In our case, the ostomy is not “the beast” but the beautiful incarnation of our body to heal itself and our spirit, and our appreciation of our stomas is parallel to Belle’s appreciation for her Beast!

What does an ostomy do to our system that impacts our facial appearance, you may be wondering? I believe that our loss of fluids, particularly for ileostomates, is major, so we need to talk about moisture and hydration. Although I am always looking for new products to rejuvenate and enhance the aging skin, I am very aware that all ostomates need to be mindful of how to get well-needed moisture and hydration into the skin, regardless of our age.

From childhood, my skin has always been on the dry side, and I accepted that reality into adulthood. But a very lovely aesthetician informed me that with proper treatment, I could have much healthier skin, since skin that holds moisture, has more of a chance of fighting illness. The glow of healthy skin reveals a canvas ready to be painted or just admired by itself. Whether valid or not, I became determined to make some important changes, and I truly believe good skin care yields results, and that is wonderful!

How Do We Absorb this Very Valuable and Sometimes Unattainable Moisture?

Like anything worth doing, there are steps to absorbing moisture. First, we must drink lots of fluids, primarily water. Many beverages do not add hydration, and may even leach hydration from our bodies. Some believe coffee, tea and soft drinks are culprits. I believe, however, that in moderation, they are fine, as long as lots of water is added to the daily diet. I love hot water, with or without lemon, and drink it all day, along with cold water, with or without lemon. UOAA’s Diet & Nutrition Guide even has recipes for hydration drinks and more ostomate specific information. You may be interested to know that fatigue is lessened, especially midday, by binging on water, rather than a fattening treat.

In caring for our skin, ostomates should use a gentle cleanser most nights, but 2-3 times a week, an exfoliant is a great addition to the routine. The exfoliant can be chemical (vitamin c or acids) or natural, such as grainy or mealy. The skin will glow and the new soft skin will let you know your skin is ready to receive moisture!

Serums are a vehicle of introducing treatment to the skin, and can add vitamins, minerals, usable acids, etc. Every day I read more and more about the addition of serums to beauty regimens, and since they are light and easy to apply, I use them morning and night.

Next, we need to use moisturizing products, and there is a myriad from which to choose. Lotions are lightweight, and wonderful for younger skin, which requires less hydration and may be producing much-needed oils, whereas creams are recommended for the aging skin.

Lastly, sunscreen every day, and oh, by the way, sunscreen, even when it is cloudy! The debates go on about what is the appropriate designated number of SPF (Sun Protection Factor) but my sources tell me 30-70 is best, taking into consideration that any less than 30 isn’t worth the product, and any higher number than 70 is just loading on more chemicals. And if we are in the sun for a long period of time, we should reapply as the day goes on. Be sure to wash off sunscreen and all makeup before bed, apply a night cream for optimal hydration…and let your skin breathe and rebuild during sleep!

(editor’s note: Peristomal skin issues are a whole different issue beyond beauty regiments and critical to medical wellbeing the link above has more information on that topic.)

Please write to me at ellynmantell@aol.com with any beauty and fashion questions you have. I am very interested in what interests YOU!