Dressing to Feel Good

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By Lynn Wolfson

It is amazing what a boost one can get from dressing to feel and look good, especially those of us with ostomies. I know that when my hair is cut into an easy style that I can maintain, my nails are done and my clothes fit, I feel beautiful. When I feel beautiful, I am happy and share it with the world.

As an ostomy support group leader, I often hear from new ostomates struggling with what to wear after surgery. Many people may have their own style and should explore options to keep wearing the clothing they love. Too many others seem to lose confidence and motivation to dress in the more presentable ways they once did. Overall, I stress to dress so that you feel confident, comfortable, and good about yourself.

So, let us start with the pants. Depending on where the ostomy is located, this will determine whether one would be comfortable with zipper and button pants such as jeans. For me, I find that too restrictive, especially since I have two ostomies. Instead, I prefer either maternity pants, so I have belly room and my legs are not baggy or high elastic-waisted pants. I buy a variety of solid colors of the pants that I find most comfortable.

Unfortunately, men do not have the same choices as women. They should find a brand of pants that are comfortable for them and get them in an array of colors. Stretchable waists can be found on various pants and shorts designs, so don’t feel like you have to resort to athletic wear if you don’t want to.

The tops for women are fun to shop.  I usually get a loose shirt or blouse that goes over the pants. I get multiple tops for each pair of pants so I can mix and match.

Men may still have to tuck their shirts in for business. However casually, they can wear a shirt outside their pants or shorts.

It helps to be beautiful on the outside, especially when I am not physically feeling great.

Since I live in Florida, I only wear pants when it is chilly or when I travel to colder climates.  Personally, I prefer wearing dresses that do not have a waist.  I find them very comfortable and cooler in our hot climate. However, these dresses are not appropriate for business. I do have more tailored dresses without a waistline to wear for business occasions. I generally prefer wearing dresses just below the knee as one of my ostomy bags hangs low.

Shoes should be comfortable. Wear sneakers whenever possible if that’s what you want to do. In Florida, I wear sandals with rubber soles. Up north, boots are a necessity.

Lastly, I get my hair colored and shaped once every six weeks to keep it looking fresh and easy for me to maintain. I also get my nails done every three weeks.

It helps to be beautiful on the outside, especially when I am not physically feeling great. It helps me to get myself going and not have that get back into bed feeling. It is all a matter of attitude!  When I dress for success, I feel good about myself and am successful in getting things done.

Daily Living with an Ostomy

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Every Individual is Unique so Don’t Put Restrictions on Yourself Based on Others

By Lisa Febre

The morning after my colectomy, the first question I had for my surgeon was “can I still do yoga?” My surgeon had a good-natured and amused response: “Please give yourself two weeks to recover from this surgery, and then you can do all the yoga you want.” He also told me that with my specific colostomy, in two weeks I could get back to my regular diet with no restrictions. (I’ve since learned those with an ileostomy have different considerations.)

Sure enough, two weeks later, once I was sufficiently recovered, I was living out his predictions. I was back on the yoga mat, twisting myself into pretzels, lifting into tricky arm balances, and standing on my head. I was outdoors hiking and running. For the first week after surgery, I was following a soft-solids diet, and by the second week I was eating whatever I wanted. By the end of the month, I was even eating Reuben sandwiches with sauerkraut!

I knew no boundaries because I had none.

It wasn’t until I joined a support group on social media that I noticed people were questioning things I was taking for granted like taking a shower, exercising, wearing pants, and eating vegetables. Are there eating restrictions for ostomates? Was it possible some people were told they could not exercise with their ostomy? The answer is …yes… ish.

Showering with an Ostomy

I was given a temporary colostomy in December 2021 when I was diagnosed with Stage-4c Colon Cancer (at the age of 47). There is no way around it: this is a big shock to the body and the mind. But the only thing I could think about was getting into the shower and washing off the five days’ worth of sweat and grime that had accumulated on my body during my hospital stay. I stripped down, my new Hollister 2-piece system hanging off of me and stepped into the shower. I didn’t think about the bag at all, I just showered like I normally did. When I was done, I dried myself and the bag off with a towel, and… that was it. I did this every single day without a second thought.

I would laugh at myself and say: it’s just poop, it’s not nuclear waste!

Weeks later, I was surprised to learn people commenting online were wrapping up their colostomy bags with layers of plastic wrap and were trying desperately to keep their abdomens out of the water. Wait… are we not supposed to get the bags wet? That didn’t sound right to me. The barrier has to be taken off with adhesive removal wipes or sprays, and even then, it can be difficult to separate it from your skin. The durable plastic receptacle bag is meant to hold all kinds of bodily fluids, it seems obvious that it should be able to handle a little soap and water. The customer service reps at both Hollister and Coloplast concurred: they specifically told me that their products are meant to be used while showering, bathing, and even swimming, with no extra accessories. Again, because no one told me I couldn’t, I was already doing these things. It was heartbreaking to see so many of my fellow ostomates avoiding basic hygiene for fear of doing it with the bag on.

It seems like the solution might be to shower without the appliance. There tends to be even more fear surrounding this practice of naked showers. Again, this was something that I had already done without asking for permission. One day I was changing my appliance, decided it would be a great time to shower, and just jumped in. The soap on my newly exposed skin felt fantastic, my stoma looked to be enjoying the water running down my belly. Naked showers were soothing and necessary for my peace of mind. I always felt the cleanest when I showered without my appliance. The skin under the barrier stayed healthy and the adhesives worked much better. Always close at hand was a disposable plastic cup filled 1/4 up with water which I used to catch any “visitors” that might erupt from my exposed stoma during my shower. I would laugh at myself and say: it’s just poop, it’s not nuclear waste!

Exercising with an Ostomy

This is something you absolutely must talk to your doctor about. I can’t give you proper advice since everyone has a different risk value for a parastomal hernia (that’s when your intestines try to push their way through the incision around the stoma). Although 50% of people with a stoma will get a parastomal hernia, that doesn’t mean you are going to get one. Your surgeon will assess your risk. I had almost no risk of one of these hernias because I was fit and active before the surgery; there was a low likelihood that my incision site would fail while I had the stoma. I was told I could begin exercising again 2 weeks post-op. Alternately, when I had my reversal surgery 10 months later, my surgeon said there is a slightly higher risk of a hernia at the closure site and wanted me to wait 8 weeks before lifting anything over 10 pounds, and that included doing yoga.

Even within one person, my risks were different for each surgery. This is why you have to have a clear assessment from your doctor and follow their directions. Some people may still develop a hernia despite following their surgeon’s directions. It’s important to question and clarify, but ultimately listen to your doctor– and not just people online, this gives you the best chance for success.

Dressing with an Ostomy

This is a tricky one for ostomates because everyone’s stoma is in a slightly different spot. I was able to wear jeans and form-fitting clothing because the location of my stoma made that possible. Someone else may have their stoma exactly where the rigid waistband of their favorite jeans falls, which can be an issue. Your clothing isn’t necessarily going to hurt the stoma, but you do need to save room for when your stoma has output. For some, tight-fitting clothing can restrict the bag, forcing the output backward toward your skin and under the barrier.

Dressing is definitely not a one-size-fits-all situation, so unfortunately no one can really give someone else game-changing advice. Be ready to experiment, but always wear clothing that makes you feel good. It was important to me to wear jeans, so I bought new jeans with a lower waistband that fell just under my stoma. Many other women invest in maternity pants. But I never left the house feeling frumpy. My colostomy was not in charge of my fashion sense, I was!

Eating with an Ostomy

Everyone has a unique reason for having an ostomy. In my case, I had my colostomy because of cancer; I had no pre-existing intestinal issues or dietary restrictions. If you are like me and could eat whatever you wanted before, chances are high that your doctor will tell you you can go back to that way of eating after your surgery. But some people, who come to a colostomy or ileostomy through ulcerative colitis or Crohn’s disease (or other gastrointestinal disease), may already have restrictions that they still need to take into consideration. An ostomy does not always magically erase your special diet for your IBD.

The general rule is however you ate before your colostomy is how you can eat now.

It does not rule you; it is not the most important thing about you, and it does not define your life.

I am vegan and I had no trouble eating any vegetables with my colostomy. UOAA’s trusted Eating with an Ostomy Guide provides info including a standard chart of foods to avoid at first with an ileostomy or colostomy – whether that is because they create stinky output, excess gas, diarrhea, constipation, or could cause blockages. Speak with your doctor and surgeon if you are unsure how to handle building your new diet. If you’re introducing new vegetables (or any kind of food) into your post-colostomy diet, just try a little bit and see what happens! If your doctor says it’s ok, don’t be afraid to try eating the old things you love, and maybe be inspired to try some new things as well. A good practice for all is to chew thoroughly and stay hydrated.

Stay Positive with an Ostomy

Some people wonder how they can ever find something positive in something so scary as an ostomy, but it can be done. You don’t need to do it in big grand gestures or sweeping alterations in your character. Just try one little switch when the opportunity comes up. It isn’t about skipping down the street singing the praises of your ostomy, it’s about finding moments when you can see the silver lining. I thought it was sort of fun to have something so unique on my body. Very few people ever get to have this close a relationship with their intestines, so instead of feeling sorry for myself, I decided to call myself “lucky” for learning so much about how my digestive tract works.

Maybe most important of all, my ostomy led me to a UOAA support group where I met some wonderful people. I have made new friends who I would never have met without my ostomy. That is something to be very thankful for.

Spend some time every day when you force yourself to not think about your ostomy. Even if it’s just 20 seconds, it is important to learn to push this thing into the background of your life. It does not rule you; it is not the most important thing about you, and it does not define your life. Stay Positive! One day, one hour, sometimes one minute at a time, but you can do this.

Learn to Take Care of Your Ostomy

Our emotional recovery depends on regaining independence. I was only 47 when I received my ostomy. I am too young to rely on others to take care of me. I laughed when the home health aide arrived and started treating me like I was 80. I was not going to lie down and become helpless. I was going to be an active participant in my own health and recovery.

Learning how to care for yourself makes you feel like a Superhero!

If you suddenly find yourself having to depend on someone else to maintain your appliance, you will feel even more out of control and worried that something might go wrong. Believe me: something will go wrong — leaks happen to the best of us, and at the most unexpected times. If you have to wait until your nurse can come to your house, or until your partner gets home from work, you will feel more helpless with each passing day. Paranoid that something terrible will happen if you get a leak while you’re alone, you may not leave the house to run errands, you may say no to social gatherings, and you may not want to go back to work.

Learning how to care for yourself makes you feel like a Superhero! I had a cool little zipper bag that fit in my purse containing a precut barrier, 2 extra bags, 2-3 adhesive remover wipes, 2-3 skin prep wipes, a disposal bag, and a travel-size PooPourri Spray. Knowing I had all the supplies I needed to do a quick bag change in a strange bathroom gave me immense peace of mind. I could change the whole system in less than 5 minutes, all by myself!

And if you need a little smile while you fumble around with your first bag change alone, just repeat my favorite mantra out loud: I got this whole thing in the bag!

 

Lisa Febre is the author of “Round the Twist: Facing the Abdominable,” a memoir about her diagnosis and treatment of Stage-4c Colon Cancer, which hits bookshelves in September 2023. She had a descending colostomy for 10-months.

Life as a Double Ostomate

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For people who have recently come to accept or are still struggling to manage one ostomy the news that they may need to have a second stoma and pouching system could be overwhelming. Please know you are not alone. Many people are able to thrive in life with two ostomies, or multiple diversions.

When UOAA hears from those with questions for a double ostomate we often refer them to ostomy community friend Jearlean Taylor.  Jearlean wanted to share some advice and invite all double ostomates to her talk and open discussion entitled “Life as a Double Ostomate” on August 12, 2023 as part of UOAA’s National Conference in Houston, Texas.

Sharing with the community of double ostomates is so refreshing and exciting. It is true “we are not alone”. We can live our life as a double ostomate with joy.

I am Jearlean from Baltimore, Maryland. I am a double ostomate, fashion model, author, motivational speaker, entrepreneur, and ostomy advocate.

My life has had some unexpected outcomes. I guess you can say “life” happened. At the tender age of 3 years old I developed a rare form of cancer (Rhabdomyosarcoma). Because of the tumors I had to undergo ostomy surgery, which left me with two permanent ostomies (colostomy & urostomy).

If you or a child come to find you need a second ostomy my advice is to ADAPT. I had to learn to adapt. As I got older it was two major things for me to adapt; body and mind. When we hear two ostomies we get scared, but when we accept what we can’t change it says we are survivors. I adapted to new ways of taking care of my body (ostomies) and keeping my mind positive. Those still adapting to having two ostomies reflect how far you have come and where you are now. Celebrate each moment.

A Common question or statement I get is “you had your ostomies that long. How did you adapt?” The moment I learned to deal with my medical circumstance when my mom explained that I was not different from anyone else. I am beautiful with my bags. I can be, do, and follow my passions and dreams. I can live a full and vibrant life. It happened just as she said. Because of what she instilled in me, I BELIEVED IT.

When we hear two ostomies we get scared, but when we accept what we can’t change it says we are survivors.

Sharing with the community of double ostomates is so refreshing and exciting. It is true “we are not alone”. We can live our life as a double ostomate with joy. We are more than our ostomies.

I also try to give encouraging tips for dressing with an ostomy for comfort and peace of mind. Remember.

  • We are beautiful from the inside out
  • Work with your body type and comfort
  • Look for clothing that YOU like ,and what is comfortable for your ostomies
  • Shopping for clothing; take a family or friend along for support
  • Try on multiple items of clothing, even the clothing in your closet
  • Consider ostomy accessories (ostomy wraps, stealth belt, hernia belt, fitted tops, high waist undergarments, etc..)

We have the ability to make a difference and change lives even through our struggles. You may have an ostomy, dealing with chronic illness, feeling down and inadequate at times, but remember you are more than you have become.  Our situations, challenges, and unforeseen circumstances does not have to dictate who we are or who we can become. My purpose is to inform everyone that “life” happens to us all; good, bad, and indifferent. I want to show people even through our struggles, pain, disease, and even having ostomy we have a purpose in life.

“DIFFERENT TO MAKE A DIFFERENCE“

 

You can find Jearlean online at jearleantaylor.com and across social media. Meet her and a whole community of double ostomates at UOAA’s 8th National Conference August 10-12, 2023, In Houston Texas. 

Fashion with an Ostomy

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Ostomates often struggle with fashion and feel their options are limited. Without a doubt, part of the journey to adjusting to your ostomy is finding ways to dress yourself that is both comfortable and still allows you to express your individuality. This was no different for Deirdre, who felt that her passion for fashion and style were taken away from her after her ostomy procedure.

Fortunately, clothing designers have recognized that women come in all shapes and sizes, so you can now find pants with a variety of waistline heights. This allows you to find a style to fit your body and your needs. For active wear, consider wearing yoga pants or stretch pants to help support the pouch during exercise. You might also try biker-style shorts since they can be worn alone or layered under shorts, exercise pants or other stretch pants.

Part of adjusting to an ostomy also includes finding the right pouching system that fits you as well. With the help of her stoma care nurse, Deirdre found a pouching system that worked for her, and she regained the confidence to go out, go to work, socialize with her friends, and do all the other activities she dreamed of being able to do when she was in the hospital. For Deirdre, fashion and style are important aspects of her life, so having a pouch that works with different outfits allowed her to feel like herself again. Her journey with chronic illness and living with a stoma has become so much more about self-esteem, body image, and loving herself. According to Deirdre, “Once I went out and started getting back to normal life again, no one ever would’ve known that I had a stoma, because the bag was so easy to wear and was hidden under my clothes.”

Deirdre found a discreet pouching system that fit her well and gave her a feeling of security, which helped her regain the confidence to leave the house in skinny jeans, or even sports leggings. Finding a pouching system with the right fit to Deirdre’s body meant having the confidence to socialize again. Although there may be some styles of clothing you want to avoid after surgery, you still have many choices open to you. See which styles you like the best, and which you find most comfortable. Every body is different and finding the right fit can make the difference between confidence and insecurity.

 

*Deirdre is a Coloplast product user who has received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare provider about whether this product is right for you.

Call your healthcare provider if you have any medical concerns about managing your ostomy. You may also contact your Coloplast® Care Advisor for product usage and availability questions at 1-877-858-2656.

Prior to use, refer to the product ‘Instructions for Use’ for intended use and relevant safety information.

Editor’s note: This article is from one of our digital sponsors, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Holidays with an Ostomy

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By Molly Atwater

Ah, November… the leaves are changing colors and falling from the trees, the jack-o-lanterns have been put away and exchanged for candy canes, and the Black Friday sales emails have started trickling into our inboxes. That can only mean one thing: the holiday season is upon us! It’s safe to say that our celebrations in 2020 will be a little different than what we’re used to. A non-traditional Thanksgiving or holiday gathering can be hard on all of us now that the CDC is suggesting limiting gatherings to just those in your household. (They’ve got some suggestions on safer alternatives to consider here.) Regardless of how we’ll celebrate, there are still lots of cookies to bake, memories to make, and laughs to share. But what does that mean for those of us with ostomies? The holiday season is inherently stressful, but adding medical issues on top can feel overwhelming. But fear not – with a little extra planning and mindfulness, you can handle the next few weeks like a pro. Here are a few tips and tricks to make sure you have a HAPPY holiday!

Travel Prepared

If you must travel during this time, make sure you pack more than enough supplies. Odds are you won’t need all of them, but it’s always better to be safe than sorry. My rule is to figure out how many bag changes I expect to perform while I am away, and then pack double that amount of supplies.  That way, even if I have to do extra bag changes, I never have to worry about running out of my necessities. I also pack in-bag odor reducers and a small bathroom aerosol spray so I don’t have to feel self-conscious about any expected or unexpected ostomy smells.

If your holiday plans include traveling by airplane, pack your supplies in your carry-on. Airlines are notorious for misplacing luggage, so keeping your supplies with you at all times can save you a lot of worrying. Also, go ahead and download one of the UOAA TSA advocacy cards to make your security checkpoint experience easier. For even more peace of mind contact TSA Cares 72 hours before your flight for additional assitence. Don’t forget to throw an empty water bottle in your carry-on to fill up once you’re at your gate to prevent dehydration. 

Enjoy Meals with Peace of Mind

When it comes to eating, everyone’s post-ostomy diets are different. For some, ostomy surgery can open up foods that were previously off-limits, while for others, options might be more limited. Regardless of your digestive system’s abilities, take the opportunity to make your meals a little more festive! If you can eat things you’ve missed for a while, go for it! But if you’re dealing with more restrictions, all is not lost. Maybe you could make macaroni and cheese with turkey-shaped pasta or try your hand at some homemade applesauce.

Chew, chew, chew! A lot of the foods we eat over the holidays are out of our normal diet, so give your body some help with digesting. It’s not a ton of fun to step away from the festivities to deal with a blockage! If at all possible, it’s also helpful to stay on your normal eating schedule. With all of the uncertainties that come with the holidays, having one steady touchstone can really help.

Alcohol is a staple for some families’ celebrations, but it can be very dehydrating. That’s an issue for everyone, but it’s crucial for those of us with ostomies. Try to alternate your cocktails with a glass of water or your electrolyte beverage of choice. Don’t forget that with the weather cooling down, warm drinks like tea also count as hydration!

Trust Your Emotions

The holidays can be emotionally challenging for everyone, but for those dealing with chronic conditions, things may feel a little tougher.  If you are feeling blue, that is ok! All emotions are valid, so give yourself the time and space to feel sad or angry and to grieve what was.  But it’s also a great time of year to reflect on the things that you are grateful for, whether that’s your support system, your health, or even just for making it through this crazy year.

Some people don’t mind talking about their medical conditions, but if you’d rather not focus on your ostomy this holiday season, think of some ways to steer the conversation in a different direction. The questions people ask typically come from a good place, but you are fully entitled to a few hours without thinking about your health.  Brainstorming quick responses or coming up with other topics to bring up instead can help you feel more prepared if you do find yourself in a situation where you want a quick “out.”

Listen to Your Body

Dealing with chronic health conditions is exhausting, and putting on a smile when you aren’t feeling great makes it that much harder. Finding others who can accept and acknowledge that things are hard instead of offering common and well-meaning phrases like “it will get better” and “stay strong” can be extremely helpful and validating. Nobody wants to be a Scrooge during this time of year, but having a safe space where you can feel seen and heard can bring you back into the celebration faster than wallowing alone.

Find an outfit that makes you feel AMAZING with your ostomy! Since a lot of us have spent more time in sweatpants than ever before thanks to quarantine, take the opportunity to wear something that makes you feel confident. It doesn’t have to be fancy – maybe just your favorite pair of pajamas or an extra-festive mask!

Get Creative

If you can’t participate in some of your favorite holiday traditions, now is the time to get creative! There might be ways to augment some existing traditions, like making different cookies without hard-to-digest ingredients, or you can create brand-new ones.  Maybe it’s time to introduce a holiday movie marathon or invite your friends to join you on a wintery walk through the woods! Whatever you choose to do, I encourage you to find an activity that brings you joy.

The holidays might feel tricky to navigate, but with a little extra preparation, you can remove ostomy stress from your list of worries.  Whether you’re a new ostomate or a seasoned pro, I encourage you to find your own tricks for making this time of year as merry as possible. From all of us here at UOAA, we wish you a happy and healthy holiday season!

 

Molly Atwater is UOAA’s Director of Young Adult Outreach. After struggling with chronic constipation for decades caused by a collagen deficiency disorder, she underwent ileostomy surgery in June 2016. In addition to serving with the UOAA, Molly runs a social media account (“MollyOllyOstomy”) that aims to teach her more than 20,000 followers about life with an ostomy and other chronic illnesses. She lives in Northern Virginia with her fiancé, Thomas.

Discover a World of Ostomy Products at UOAA’s National Conference

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Imagine if there was a place where over forty ostomy product manufacturers, accessory makers, distributors, lifestyle experts, and related support organizations could gather with ostomy patients from around the world? Well, UOAA’s 7th National Conference Exhibit Hall is that place, and everyone is invited. It will be open August 8 and 9, 2019 at the Philadelphia 201 Hotel in the heart of Philadelphia, Pennsylvania.

People return to UOAA’s biennial national conferences not only because of the lifelong friendships, education, and social events but also because of the exhibit hall. It is a fun one-stop experience to ask questions about your favorite supplies or discover what is the latest and greatest in the world of ostomy care. Attendees have the chance to sign-up for sample products and talk one-on-one with representatives of all the major and specialty ostomy product manufacturers. Visitors often find the passionate owners and inventors of unique ostomy products on hand to introduce you to their products.

 

UOAA is proud to be able to provide this space for our community to gather.  The conference runs Aug. 6-10, but If you can only come to our conference for one day you’ll want to consider registering for the exhibit hall days Thursday and Friday. There is even a free box lunch Friday for all those registered attendees who enter the exhibit hall. You may want to consider staying longer, however, to take advantage of the free stoma clinic, expert educational session and surgery specific meet-ups. And don’t miss social events such as the Roaring 20s Casino Night and Music Thursday and the Saturday night fashion show, desserts, and dancing. Be sure to stop by UOAA’s table where you can sign an important petition for the Ostomy and Continent Diversion Patient Bill of Rights and learn about all the upcoming events such as Ostomy Awareness Day and the Run for Resilience Ostomy 5k.

 

Here is a list of all the businesses and organizations exhibiting this August. Like UOAA, they are dedicated to improving the quality of life of people living with an ostomy. 

 

11 Health and Technologies Inc.
www.11Health.com • 657-266-0570

11 Health helps people living with medical bags by combining peer-to-peer support with unique patented SmartBags that collect patient generated data for preventative care. 11 Health thinks and acts differently from all established medical bag companies because we see the patient as a patient – not an end user.

ASCRS – Colon/Rectal Surgeons
www.fascrs.org • 847-290-9184

You are invited to visit the ASCRS Booth and receive information regarding services ASCRS can provide, including patient referrals and patient education brochures. The scope of colon and rectal surgery includes the small bowel, colon, rectum and anal areas.

Avadim Health, Inc.
www.theraworxprotect.com • 877-677-2723

Avadim Health Inc. is the Bionome Life Science company. Avadim’s flagship product Theraworx® Protect is a topical solution that supports the skin’s outer most layer, the stratum corneum, while remaining Non-Toxic and Safe.

B Braun Medical
www.bbraunusa.com • 800-227-2862

B. Braun Medical Inc. develops, manufactures, and markets innovative medical products and offers ostomy products including Flexima® 3S two-piece appliance with a unique guiding system and a High Output System. The myosto™ resource offers ostomates the ability to request product samples and educational resources on the website. Visit www.bbraunusa.com and www.myosto-mylife.com

Byram Healthcare
www.byramhealthcare.com • 800-227-2862

Byram is the leading service and solutions provider of disposable medical supplies delivered directly to the home while conveniently billing insurance plans. We provide convenience, affordability and choice™ to make a positive difference in the lives of the people we serve.

Calmoseptine, Inc.
www.calmoseptine.com • 714-840-3405

Calmospetine® Ointment protects and helps heal skin irritations from moisture such as urinary and fecal incontinence. It is also effective for irritations from perspiration, wound drainage, fecal and vaginal fistulas and feeding tube site leakage. Calmoseptine® temporarily relieves discomfort and itching. Free samples at our booth!

Cancer Support Community
www.cancersupportphiladelphia.org

Cancer Support Community is a leader in cancer support, and is the largest cancer support organization in the world that provides 100% free services and programs for individuals and families impacted by cancer. The Community serves those with cancer, who have a family member or friend with cancer and who have lost a loved one to cancer.

Celebration Ostomy Support Belt 
www.celebrationostomysupportbelt.com • 413-539-7704

Our ostomy Celebration Belt systems are designed to protect your dignity while allowing you to lead an active life. Learn how to measure for a correct fit, get wear and care information, and order your belt with confidence.

Colo-Majic Enterprises
www.colomajic.com • 866-611-6028

Colo-Majic® Flushable Liners are designed to be inserted into a two piece closed end pouch system to collect colostomy/ileostomy output. Liners will keep your pouch clean allowing for reuse and makes output disposal quick and easy.

Coloplast
www.coloplast.us • 888-726-7872

Coloplast develops products and services that make life easier for people with very personal and private medical conditions. Working closely with the people who use our products, we create solutions that are sensitive to their special needs. Our business includes ostomy care, interventional urology, continence care, wound & skin care.

ConvaTec
www.convatec.com • 800-422-8811

At ConvaTec, we exist to improve the lives of the people we touch and are committed to helping people living with an ostomy live the life they want with more confidence and freedom. Our me+ program gives you the support, insights and products you need. For more information, visit convatec.com.

Crohn’s & Colitis Foundation 
www.crohnscolitisfoundation.org  888-694-8872

The Crohn’s & Colitis Foundation is dedicated to finding cures for Crohn’s Disease and ulcerative colitis, and to improving the quality of life of children and adults affected by these diseases. The Foundation is at the forefront of research in inflammatory bowel diseases in addition to educating, supporting, and empowering patients and caregivers.

Edgepark
ww.edgepark.com • 800-321-0591

Edgepark is a leading provider of home-delivered, disposable medical products. We specialize in ostomy, wound care, urological, incontinence, diabetes and more, offer comprehensive insurance options and provide free nationwide delivery. To learn how we can help meet your supply needs, please call 800-321-0591 or visit www.edgepark.com.

Friends of Ostomates Worldwide
www.fowusa.org • 502-909-6669 • info@fowusa.org

Friends of Ostomates Worldwide-USA is a volunteer-run, non-profit organization that collects donated ostomy supplies from individuals and organizations in the United States and sends them and educational materials at no cost to ostomates in need around the world.

Girls With Guts
www.girlswithguts.org • info@girlswithguts.org

The vision of Girls With Guts is to establish a national support network that assists women with IBD and/or ostomies in their search for community, acceptance, and empowerment. This rapidly growing sisterhood helps to ensure that no woman will ever feel isolated by her disease.

Hollister Incorporated
www.hollister.com • 888-740-8999

At Hollister Incorporated, we are dedicated to delivering the highest standard of quality in medical products and services, and each member of the Hollister team is committed to making a difference in the lives of people who use our products and services.

Hy-Tape Int. 
www.hytape.com • 800-248-0101

Hy-Tape’s latex-free, waterproof, zinc oxide-based adhesive is soothing to delicate skin, and removes without compromising skin integrity. Our tape is perfect for extended ostomy wearing time, adhering securely so the end user can resume normal activities such as walking, exercising, bathing and swimming without worry of detachment.

KEM Enterprises, Inc.
www.kemonline.com • 616-676-0213

KEM Enterprises, Inc. manufactures the Osto-EZ-Vent.® The Osto-EZ-Vent® is the unique venting device designed for any Ostomy pouch, which allows quick, discreet release of air pressure. Invented by an Ostomate, the OEV™ gives the wearer complete control and confidence to lead an active life. Medicare code A4366. Visit us at kemOnline.com.

Marlen Manufacturing
www.marlenmfg.com • 216-292-7060

Since 1952, Marlen has been a leading innovator in ostomy care. Offering an extensive line of one-piece and two-piece systems for Ileostomies, Colostomies and Urostomies, Marlen has always strived to provide the highest quality products while meeting the comfort and security needs of our customers. Visit our website at www.marlenmfg.com

McKesson Patient Care Solutions
www.mpcs.mckesson.com • 855-404-6727

From doctor to doorstep, McKesson Patient Care Solutions provides healthcare that fits into your everyday life. With online support to answer all your questions, a team of customer service Reps to help you choose the right supplies, and fast, convenient shipping right to your door.

No You Cant’cer Foundation
www.noyoucantcerfoundation.org • 609-464-4647

The No You Cant’cer Foundation is a nonprofit organization working to dispel the negative stigmas surrounding ostomy bags and colorectal cancer while inspiring through song. By nationally distributing informational pamphlets and creating her awareness ribbon necklaces, cancer survivor and ostomate Melissa Marshall aims to help everyone say No You Cant’cer.

Nu-Hope Labs
www.nu-hope.com • 800-899-5017

Nu-Hope manufactures ostomy devices, accessories, belts, barriers and adhesives. We specialize in custom molded pouches and custom ostomy/hernia belts. Other highlights are our oval convex pouches, and stoma wafer hole cutters. Check out the Nu-Comfort belt and new for 2019, our moldable extended wear barrier. Don’t forget the Fun Run/Walk!

Oley Foundation
www.oley.org • 518-262-5079

The Oley Foundation is a non-profit organization providing information and support to those sustaining themselves on home infused and/or tube fed nutrition. Outcome data demonstrates that those connected to Oley have better outcome: significantly higher quality of life, less reactive depression, and a lower incidence of catheter-related sepsis.

Ostomy Canada Society
www.ostomycanada.ca • 888-969-9698

Ostomy Canada Society is a non-profit volunteer organization dedicated to all people with an ostomy and their families, helping them to live life to the fullest through support, education, collaboration and advocacy. www.ostomycanada.ca

Parthenon Co., Inc.
www.parthenoninc.com • 800-453-8898

Family owned and operated for over 50 years. The Parthenon Company is a manufacturer and discount retailer specializing in ostomy supplies servicing customers throughout the United States.

Philadelphia Ostomy Association
www.philaost.org

The Philadelphia Ostomy Association was established in 1949 as the Colostomy Ileostomy Rehabilitation Association. As time went on and Urostomy surgery was developed, we changed our name to the Philadelphia Ostomy Association to support all types of ostomates.

Pouch Place
www.pouchplace.com • 865-531-1285

Nurse owned and managed ostomy care and supplies. For more than 27 years the Pouch Place has offered a complete selection of ostomy, wound care and incontinence supplies treating each patient’s needs with thoughtful and respectful care from two store front locations and an online store serving patients nationwide.

Pull-thru Network, Inc.
www.pullthrunetwork.org • 309-262-0786

Pull-thru Network, Inc (PTN) is a volunteer-based non-profit organization dedicated to providing information, education, support and advocacy for families, children, teens and adults who are living with the challenges of congenital anorectal, colorectal, and/or urogenital disorders and any of the associated diagnoses.

Quality Life Association, Inc.
www.qla-ostomy.org • 662-801-5461

The Quality Life Association, Inc. (QLA) is a non-profit nationwide association aimed at meeting the special needs of the continent ostomate and to educate others on the latest advances in ostomy options.

Safe n Simple
www.sns-medical.com • 844-767-6334

Safe n simple is an innovator that develops and markets a full line of high quality, cost-effective ostomy accessory products. The patented Peri-Stoma Cleanser and Adhesive Remover wipes are their most popular product. Now offering Security Hernia/Ostomy Support Belts.

Sanitary Ostomy Systems, Inc.
www.sanitaryostomysystem.com • 805-441-6708

Discover Our Exclusive Pouch-Emptying Systems For Use At Home And Everywhere Else. THE SOS KIT: Compresses pouch contents into a detachable, disposable collection bag. The perfect reusable solution for ostomates & caregivers. THE TRAVELER KIT: Empties your pouch anytime, anywhere – even in your car! Completely disposable, discreet and easy.

Schena Ostomy Technologies, Inc.
www.ostomyezclean.com • 239-263-9957

The revolutionary EZ-Clean Pouch system can be cleaned in less than 3 minutes. Water under pressure is dispersed via a manifold inside the pouch to provide thorough, hygenic cleansing of the pouch and stoma while sitting on the toilet. See details on how to normalize life with an ostomy online at: www.ostomyezclean.com.

Simply Beautiful
www.simplybeautifulstore.com • 304-771-1773

Wraps and Lingerie that empower women and preteens to feel more confident and reveal your true beauty while thriving with an ostomy.

Stealth Belt Inc.
www.stealthbelt.com • 800-237-4491

A Stealth Belt is an ostomy support belt that is specially designed to hold an ostomy appliance securely and discreetly. A Stealth Belt may be worn 24/7 to provide comfort and give you privacy. Stealth Belt’s great design features include, light weight fabric, a zippered pouch compartment, and a range of adjustability for ease of sizing.

Stomagienics, Inc.
www.stomagienics.com • 225-939-1460

Stomagienics Inc., was created based on an extraordinary situation involving a family member who, after having ostomy surgery, solved a plaguing issue that occurs during the ostomy pouch replacement process. We use many of his original design principles to create a revolutionary new product that will change the lives of ostomates worldwide.

Surviving to Thriving
www.elaineorourke.com/ostomyprograms • 978-281-6126

Are you struggling to live a fulfilling life with your ostomy? Elaine O’Rourke, creator of the “Surviving to Thriving: Overcoming Ostomy Challenges Program, has had an ostomy since 2005 and understands the struggles are real! Stop by to claim your gift, 3 Simple Ways to Eliminate Fears About Your Ostomy.

Takeda
www.takeda.com • 877-825-3327

Takeda is a global, values-based, R&D-driven biopharmaceutical leader headquartered in Japan, committed to bringing Better Health and a Brighter Future to patients by translating science into highly-innovative medicines. Takeda focuses its R&D efforts on four therapeutic areas: Oncology, Gastroenterology (GI), Neuroscience and Rare Diseases. We also make targeted R&D investments in Plasma-Derived Therapies and Vaccines.

Trio Ostomy Care USA  

www.trioostomycare.us • 863-421-9400

Trio Ostomy USA, has an over-riding commitment to patient care with improvements to quality of life being at the heart of our business. We ensure that our products reach healthcare providers at an affordable level, offering the benefits of the most advanced silicone technology for all.

United Ostomy Associations of America (UOAA) Inc.
www.ostomy.org • 800-826-0826
United Ostomy Associations of America provides educational material, resources, support and advocacy for those who have or will have ostomy surgery, their family, caregivers and medical professionals. Stop by our booth to view our resources and show your support of the Ostomy and Continent Diversion Patient Bill of Rights by signing the online petition.

Youth Rally
www.youthrally.org • info@youthrally.org
More than 30 years after inception, the Youth Rally continues to provide an environment for young people to meet others who live with conditions of the bowel and bladder. Lasting friendships are formed, in a short 5 nights, in an atmosphere that promotes self-confidence and independence.

 

Click Here to learn more and register for UOAA’s 7th National Conference Aug. 6-10, 2019 in Philadelphia, PA.

Fun In The Sun, Ostomy Style

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Feeling comfortable and fashionable by the water this swim season

By Ellyn Mantell

Living on the East Coast means sand and sun as soon as the calendar pages turn to May, and most have great difficulty saying farewell to the ocean each fall. The smells of delicious boardwalk foods, carnival-style rides, miniature golf and people-watching on the beach fill the days and nights of the summer months. It seems, for all of us, there are not enough opportunities to enjoy our vacations or weekends, and ostomates certainly do not want our particular issues to slow us down!

The first summer after my ileostomy presented a bathing suit challenge, and my creative energy began to flow. Since I love whimsy, I bought a black and white polka dot swimsuit bottom from an ostomy clothing company, which has a place for my pouch, and a soft drape to the fabric. I paired it with a vibrant red tankini, which I bought at a bathing suit store in the local mall. For those unfamiliar with tankinis, I am happy to extol praises on their wearability for all women – they are simply tops for a two-piece suit, but unlike a bikini top, which exposes the abdomen, tankinis cover the entire abdomen and are exceptionally flattering. Incidentally, this 2-piece approach works very well for those of us with a smaller upper body, or vice versa. I loved wearing my attractive ensemble, my pouch was hidden, and my self-esteem was certainly not deflated!

In addition to the 2-piece approach, many women enjoy wearing a sundress, since, like the ease of a “little black dress,” the fit is extremely flattering and there is no concern about pulling together disparate pieces. Most women have a preference about the type of bathing suits they want to wear, and our ostomies do not preclude us from our choices, particularly for those who wish to actively swim or dive. There are even high-neck active swim lap suits for serious swimmers.

Coverups have always been a staple for women, and they are ever more important to some ostomates. A flowy chiffon or traditional linen coverup provides a vertical line for the eye, and since color is always attractive, prints, brights, black and white all call attention upward, making the legs look longer and thinner.

Men can now find specialty ostomy swimwear online and know their pouches are safely protected while swimming or diving, as well. Some prefer to wear under their suits products such as a swimwear coverup or ostomy support wrap, made with lightweight water-resistant material to provide structured support, while compressing the pouch against the body. If there is real concern about the efficacy of their pouching system, some men and women prefer to use a waterproof ostomy cover. And speaking of coverups, men may consider swim shirts, sweatshirts or t-shirts to cover themselves.

No article on bathing or swimsuits would be complete without a conversation about sun protection clothing. This category of swimwear is growing exponentially each year, since the sun is stronger than ever, and our knowledge of the need to be proactive in protecting ourselves is better understood. If you look online you will find UV, sun-retardant and even chlorine resistant swimwear.

Now throw a good book or The Phoenix Magazine in your tote bag, add a huge hat or baseball cap, fabulous sunglasses, throw in SPF 50 Sunscreen, some ostomate-friendly nibbles and lots of cool water. Enjoy the day, summer never lasts long enough!

 

Ellyn Mantell blogs at morethanmyostomy.com and is a UOAA advocate and support group leader from New Jersey. 

Feeling Great is Always in Fashion

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Living with 2 Ostomies Since 1974

Jearlean Taylor has never known life without an ostomy. She has had two ostomies (colostomy and urostomy) since she was just two years old. But with the support of her family and her own inner drive, she triumphed to become a successful model, author and businessperson. Here she shares her story and offers ostomy fashion tips that work—both on and off the runway.

Dressing Up and Looking Great

Maybe you don’t want to be a fashion model. Maybe you just want to look good at your friend’s party this weekend. Here are some practical fashion tips Jearlean learned from the modeling business that work in everyday life, too.

When in doubt, try it on.

“Maybe not every outfit will work for your ostomy, but something will. If you like something, try it on. You may be surprised.”

You can make anything fashionable.

“Sometimes I throw on a scarf with an outfit. I might put a belt around my waist. Even when it may seem strange or crazy, I put an outfit on to see if it makes me feel confident.”

Find the right jeans.

“A lot of people want to get back in their jeans again. If you’re anxious to get back into jeans right after surgery, try maternity jeans; they stretch and put less pressure on your pouch as you get comfortable with your ostomy.”

Fashion-friendly wraps.

“Some ostomy wraps have a pocket on the inside that securely fits your pouch and keeps it flat against your abdomen to help relieve the pressure of your pouch filling. This is helpful when you’re wearing certain kinds of clothes.”

Feel good about yourself.

“No matter who you are, you’re beautiful. You’re carefully and wonderfully made. You’re a designer original. There’s nobody like you.”

 

Have questions about living with a colostomy, ileostomy or urostomy?

ConvaTec’s expert team of me+™ ostomy nurses and product specialists is only a phone call away.

Call: 1-800-422-8811 (M‍onday-F‍riday, 8‍:30am-7:‍00pm ET)

Email: cic@convatec.com

Editor’s note: This educational article is from one of our digital sponsors, ConvaTec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Top 5 Ostomy Concerns

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You may have questions about your ostomy, how to care for your stoma, and how to keep living the life you want to live – but you don’t have to figure it out on your own. Hollister Secure Start services offer free support for people living with an ostomy, regardless of the brand of products used. Below are five common questions we are asked from people in the ostomy community like you.

I’m having leakage under my pouching system.

To help solve the issue, we would ask several questions including the current pouching system being used, and the frequency of it being changed. Other questions that would assist us in problem solving might be—How are you preparing your skin before putting on your pouch? If the products are not being properly applied, it could cause adherence issues. Are you cleaning out your pouch or do you put anything in it? Most important, where is the leakage occurring? If it’s always in the same area, evaluate the area for any creases or uneven surfaces such as scar tissue, incisions, or your belly button that may cause an uneven surface under the barrier. If this is the cause, you might try a barrier ring as a filler to even out the surface area. However, make sure that the stoma size is correct in the barrier. You’ll know it’s a correct fit when the barrier fits where the skin and the stoma meet. There should be no skin exposed between the stoma and the opening of the barrier.

 

My skin is irritated and weepy.

This can be a problem for many people with an ostomy. A person should not have skin breakdown, open wounds, or a rash under the barrier. Where exactly is the skin breaking down? How long has it been going on? Is there a situation that may have led to this irritation, such as leakage or was your barrier removed too quickly? What product are you using to prepare your skin for the barrier? Try using stoma powder to absorb moisture from broken skin around the stoma, which may help allow the skin barrier to get better adherence. The cause of the skin irritation needs to be addressed in order to find solutions.

 

I am noticing an odor and I’m concerned others will too.

There can be an odor associated with emptying your pouch versus odor caused by leakage and we need to determine which one you are experiencing. A lubricating deodorant is a great choice for neutralizing the odor of the stool when the pouch is emptied. You might also consider a pouch that has a filter, which neutralizes odor caused by gas in the pouch. Make sure that no stool drainage gets on the outside of your closure system. If neither of these situations is the issue your barrier might be starting to lift off the skin, which can allow odor to escape and can be the beginning of a leakage.

 

My pouching system is not staying on. What can I do?

It may be a problem with your barrier seal. Make sure you have one that you can count on. Everybody is different when it comes to wear time. A good rule of thumb is to determine how many days you can rely on the product to provide a secure seal without experiencing leakage. Monitor the back of the barrier when you change the pouching system. If you see stool or urine from the stoma that has leaked under the barrier, it’s a sign that the barrier seal is compromised and the barrier can begin to lose adherence to the skin. If this occurs then the barrier should be changed. It’s important to change your product on a routine basis, which can be determined by the lack of stoma drainage under the barrier as well as the condition of your skin.

 

It is important that my pouching system is discreet. What can you recommend?

When a pouch fills with gas or drainage it will start to balloon out and might show under clothing. A pouch with a filter can help release the gas. Also consider emptying your pouch when it’s a third to a half full. When a pouch is full it could cause weightiness on the barrier, which might lead to leakage. When it comes to discretion, it’s important that you find the right pouching system for your body. Hollister offers both one- and two-piece systems. For a person with a colostomy or ileostomy, there are drainable and closed-end pouches in various lengths and options of transparent, ultra-clear and beige pouch films. Those with a urostomy can also choose from pouches with transparent, ultra-clear or beige film depending on the product they are using.

 

As always, it’s important to follow up with your healthcare professional or Wound, Ostomy, and Continence Nurse for clinical or medical advice.

 

Have a concern that wasn’t mentioned here?

Check out the helpful tips from Hollister Incorporated, Routine Care of Your Ostomy or go to Hollister.com and navigate to the Ostomy Care Resources to find accessory sheets, helpful brochures and videos.

 

Need someone to talk to?

Hollister Secure Start services is here to help! Call us today at 1.888.808.7456.

 

Nothing contained herein should be considered medical advice. Medical advice can only be provided by an individual’s personal doctor or medical professional.

Editor’s note: This educational article is from one of our digital sponsors, Hollister Incorporated. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Swimsuits and Stomas

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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