Ostomy Awareness Starts with You

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It’s up to you. Will ostomy awareness, support and education stay in the shadows this year or touch lives and impact those in your community? Will you celebrate the resilience of people living with an ostomy and fight for those still in need?

If you want this shirt simply sign-up for any walk/run or the virtual option. Must order by Sep. 13 to get your size.

Ostomies are Life-Savers. It’s that simple, and that’s both the Ostomy Awareness Day theme and what will be emblazoned on the t-shirts of those gathering at the Run for Resilience Ostomy 5k awareness events September 28 and October 5 and 12, 2019.

You don’t have to run, or even walk a step, to support these charity events. It’s easy. If you’re not able to come out for an event (or simply like to sleep in) ­– donate to an event near you, or the worldwide virtual 5k event. You can also check out all the other ways to make a difference this Ostomy Awareness Day, Saturday, October 5, 2019.

Consider supporting that person who just had ostomy surgery in the past year and is seeking the confidence to get out in the world again. Attend or donate to the event of a double ostomate like Roxanne Camp, who despite countless surgeries, is still bringing ostomy awareness with a smile to her community in Arizona in the form of an Ostomy 5k fun run and a picnic open to all.

 

Phil Moyle in Spokane, WA started a fundraiser for this year’s Ostomy5k in Boise.

Start a fundraiser like Phil Moyle of the Inland Northwest Ostomy Support Groups and let your friends and family know why this cause is so close to your heart. Phil was touched by the passion of the Herrett family in Boise. They started a run for their two children who have ostomies in the hope they’ll be able to live in a world that will embrace their differences.

All around the country, those who are seeking empowerment over their health will be gathering with friends and family to walk, run or roll at an event near them or anywhere they want with the virtual 5k option. Most of the attendees typically do not have an ostomy, yet will be out on the streets to support you.  If you’ve never run before– consider this as motivation. The events are all beautiful park locations. Some of the event locations are simple fun runs while others are on a timed and certified courses that attract a handful of serious competitors. Check out www.ostomy5k.org for all the details.

Gather friends, your support group, co-workers or family and host a Virtual Ostomy 5k walk event and fundraiser wherever you want. We’ll send you t-shirts and race bibs and you can send us photos!

Consider starting a couch to 5k group with some friends (It’s easy with an app like this.). Walk with your support group, friends or family anywhere you want by signing up for the worldwide virtual ostomy 5k. We’ll mail you out a t-shirt and a race bib so you can be a real part of this national movement. If you don’t want a shirt, the event is free! 

You could plan on taking a fun trip to Nashville and meet fashion designer and survivor Manny Cuevas who is helping to organize the event there and is hand sewing ostomy pouch covers for top ostomates that complete the run. Run for those who are still battling illness and can’t host a run this year like Stephanie Urzi in New Jersey.

Lucky competitors may get an exclusive pouch cover from designer Manny Cuevas.

Support and donate to events hosted by dedicated ostomy nurses who have volunteered their time for you, such as Lara Leininger and Angela Richardson in North Carolina, Gina Day in Pennsylvania, Misty Edwards in Alabama, Deborah Nelson in Tennessee, and Amber Lords and Jessica Blakeslee in Idaho. They work all day with patients but still want to do more to create awareness in their own communities, and to benefit all people living with an ostomy in the United States.

UOAA’s national advocacy, trusted resources, and support groups nationwide help turn around countless lives. Event proceeds benefit UOAA as this is our major fundraiser.

Thanks to our national sponsors who help offset the costs of the events and believe in this mission. They volunteer, have reps, products and information on hand. Exclusive Diamond Sponsor Hollister will have employees in Stuarts Draft, VA that will be running in solidarity. Gold Sponsor Coloplast’s Vincent Faiola, who is also a support group leader, is gathering the ostomy community for an event in Vancouver, WA. Silver Sponsors Byram Healthcare and Colo-Majic are excited to connect with you and support the cause. Bronze Sponsor Safe-n-Simple’s Michele Pitylack and Holly Loos are hosting an event in Michigan and promoting the event nationwide. Bronze sponsors ConvaTec will also be on hand at the events to answer your questions and new sponsor Osto-EZ-Vent is proud to be a part of this event. And thanks so much to our local sponsors who do so much for the community spirit of these events.

Walk or roll because you can. Run if that is your goal. Donate or fundraise if you have the means. Or volunteer at an event near you and cheer on others. We’re sure friends and family have encouraged you to support a charity close to their heart before ­– now may be the time to ask a favor in return. Ostomy awareness simply saves lives, and it needs to start with us, the time is now. Show the world we’re alive and why they should care.

Click Here to Register at an Event Near You

Click Here to Donate or Start a Fundraiser

Click Here for a T-shirt and a Virtual Walk/Run you can do Anywhere

Gwendolyn’s Journey with Short Bowel Syndrome

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Working with Takeda to Educate Others about Gastrointestinal Disorders

 

Ten years ago, I would have introduced myself as Gwen. Today, I am Gwendolyn, a version of me that’s been to hell and back with Short Bowel Syndrome, or SBS. A me who’s come to know a strength she had no idea she possessed. Gwen, before SBS, was career-driven, rushing through life. Everything for me was fast-paced—work, home, and family. But that was ten years ago, before SBS barged in and reshaped my entire life, stripping me of my identity. With August being SBS Awareness Month, I am sharing my story about living with SBS and an ostomy, as a way to drive awareness of this disease among others like me who are impacted.

I’m your typical New Yorker. What comes up, comes out. But not when it comes to SBS. It’s not the prettiest of conditions, is it? Intimate details aside, no one really understands what we’re going through. When I was diagnosed, I felt so isolated. To this day, I still have flashbacks of being in that hospital bed, wondering why. I wasn’t comfortable discussing what I was going through. No one deserves to feel alone with SBS. We are not hopeless. I don’t believe that. I’d like to believe that what I’ve been through is for a reason. Maybe sharing my story is my reason—to help people see that SBS can be a beginning, and not an end.

I entered the workforce shortly after completing high school. In 1991, I began working in construction. The minute I walked onto a job site, I felt at home. I started out as a temporary receptionist and after various projects, I worked my way up to office manager. I worked in construction for over 20 years. Come 2009, I was the administrative manager for the largest construction project in the country. I was happily married, living in the Atlanta suburbs, and enjoying any time I got to spend with my precious granddaughter. Life was good. I really felt like I had arrived. In fact, I was so focused on my job and being everything to everybody that I wasn’t giving the pain I’d been experiencing the attention it deserved.

By then, I’d undergone three separate abdominal surgeries: one to remove my appendix at age four, another to address a small bowel fistula at age 27, and finally a hysterectomy at age 40. For years, I’d been experiencing intense abdominal pain, which I’d alleviate with a pain reliever here and a pain reliever there. Until, one day, the pain relievers stopped doing the trick, and I’d just about had enough. I decided to finally seek medical attention. Turns out, I had quite a bit of scar tissue and adhesions leftover from my past surgeries. After talking it over with my doctors, I decided to go ahead with surgery to clean it up.

As far as I knew, the surgery was a success. I was released from the hospital on my 54th birthday. Two weeks later, my daughter came over and found me, incoherent, with a greenish fluid seeping through my surgical dressing; my temperature had spiked to 104 degrees. I was rushed to the hospital and immediately sent into surgery. I had developed a bad sepsis infection as a result of multiple fistulas found within my small bowels. I underwent two additional surgeries, which required the removal of portions of my small bowel, and was placed in a medical coma. While in the coma, my husband made the decision to have an air ambulance fly me to a larger facility where I was immediately rushed into surgery—again. This surgery would end up costing me additional portions of my small bowel and my colon as well.

I remember waking up days later and having no idea what had happened. So where am I? At a different facility, and in critical condition, so bad that they’d previously advised my daughter to say her goodbyes. My abdomen was completely opened and connected to wall suction. I also was left with an ileostomy. I’d have to now receive nutrition via total parenteral nutrition (TPN) twenty-four hours a day, seven days a week. At no point did anyone say a thing about SBS.

I was admitted in May of 2009. I ended up going home in April of 2010. My body couldn’t seem to hold off the ongoing infections. It seemed that everything that could possibly go wrong did. Let me tell you, I cried a lot. I couldn’t help but think, Why me? What had I done to deserve this?

My husband came to visit every day after work and stayed with me in the hospital on the weekends. One day he came in and I was having one of my uncontrollable crying spells. He lost his temper. He said to me, “What the hell are you doing? You are not doing anything to help yourself!” He spoke the truth; no sugarcoating it. I got angry. But you know what? I needed to get angry. I needed to feel something other than self-pity. I stayed angry for a long time after that day—not at him, not at the doctors, but at myself for not doing my due diligence. It was hard for me to admit that. As an administrator, I was used to surveying contracts, invoices, as well as familiarizing myself with the details. Yet when it came to my health and being my own advocate, I felt I had failed. But that didn’t mean I couldn’t start now. My husband helped me see that. He got me out of bed every single day to walk. He would wrap me up in blankets, place me in a wheelchair, and take me outside in the dead of winter in order for the sun to hit my face.

I managed to make it back to see my original gastroenterologist in April 2010 after I was discharged from the acute care facility, who for the first time diagnosed me with Short Bowel Syndrome (SBS), or what he called “short gut.” After my diagnosis with SBS, it took me a long time to come to terms with it; no one told me how different my life could be. I had no choice but to do a little soul searching, and it was there I met Gwendolyn. Gwendolyn wasn’t scared; she wanted some answers. Gwendolyn knew that, in terms of healthcare, there had to be more options out there.

After I was discharged, I returned to the hospital in May of 2010 in order to reverse the ileostomy and close the opening in my abdomen. I prayed that, afterwards, things would go back to normal. Boy, was I wrong. I had lost 75 percent of my small bowel and 25 percent of my colon.

I was tired of relying on TPN. By that point my doctor and I reduced the amount of time for my infusion requirements at home. There were nights I couldn’t bring myself to connect to TPN, and my husband had to do it. I got tired of wearing the backpack if I went out, and people asking, “Are you going camping?”

My infectious disease doctor recommended a gastroenterologist he thought would be a good fit. He was right. At my first appointment with her, she listened to my case and evaluated treatment options that would help me reach my treatment goals.

To help monitor my health and stay where I want to be medically, I keep a daily log, which includes voids, bowel movements, when I take my medication, daily activities, and what foods I’ve eaten. I even log my blood pressure and temperature. I see my gastroenterologist every two months. A log takes the burden of remembering off my shoulders, and all of my doctors seem to appreciate the effort. I have an amazing medical team. My gastroenterologist. My infectious disease doctor. My therapist. My nephrologist. And my primary care physician. But my surgeon, he was a gift. The last time I saw him was in April of 2017. I had been his patient for eight years. Before I left his office, he gave me some of the best advice to date; he said, “It’s time to go ahead and live your life.” I can hardly talk about that man without crying. He saved my life, in more ways than one.

The reality is, I have good days and bad days. On my good days, I spend that time making cupcakes for my granddaughter. I make a mean cupcake. I do laundry. I go out with friends. That’s right—I leave my house! I don’t go anywhere without my little toolkit. Inside my purse, I’ve got baby wipes, disinfectant spray, odor eliminator, rubber gloves, and hand sanitizer. But you know what? It works for me.

While I don’t miss some of the old Gwen, I do miss her tenacity. So I’m working on getting a little of the old me back—saying “yes” to opportunities and working on relationships with others.

When I was diagnosed with SBS, I wish that I had done more research to learn what the future could be like living with SBS. I think that would have saved me a lot of pain and heartache. So I’m going to tell you what I wish someone would have told me. If you’re not comfortable with where you are, do something to get where you want to be. If you feel like something is wrong, do something about it.

To learn more about Short Bowel Syndrome (SBS), please visit shortbowelsyndrome.com. You can also engage with #shortbowelsyndrome on social channels, especially during the month of August, which is SBS Awareness Month.

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

Find Solutions to Problems That Can Occur With an Ostomy

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Many people with an ostomy find that once their stoma has settled and they are in a normal routine, they are able to live their life with few ostomy related issues. However, as you are adjusting to life with a stoma, you may experience some problems that are quite common. We have put together a list of some common ostomy related problems and solutions so you can be well prepared if and when they occur.

Many ostomates continue to live with stoma issues and problems unaware that there are solutions available to them. Learning how to care for your stoma and understanding these common problems will help you to find normalcy and routine after your surgery. Access to this information will help you to take charge of your life and increase your confidence.

Before we get into the common problems and solutions, it might be helpful to mention proper cleaning and application. With proper care of your stoma and the skin around your stoma you may reduce the risk of the below problems. Proper care begins with proper application. Make sure your barrier hole fits tightly around your stoma, and that the skin is clean and dry for application. When removing your barrier, it is important to lift it gently off of your skin while using your other hand to press down on your skin. Ripping the adhesive off quickly can cause redness and irritation that can lead to other problems. To clean your stoma and the area around it, use a soft cloth or towel and warm water. Be gentle when cleaning, as aggressive rubbing or wiping can irritate the skin. It is not necessary to use soap, as soaps can leave residue and irritate the skin. When changing your pouching system, it can be helpful to use a small hand-held mirror to see all around it. If there is leakage, use the mirror to check all areas of your barrier and stoma for gaps and creases. Once you’ve identified the problem area, it will be easier to address.

Leakage

Two of the main factors of leakage problems are: how you prepare your skin before you apply your barrier, and your barrier size. You should make sure to clean and dry your skin completely before applying a new pouching system. If you are having trouble getting the area dry, an absorbing powder might be a good solution for you. If your pouch gets too heavy and tends to pull away from your skin, or if your barrier does not fit correctly, a protective seal between your stoma and the barrier can prevent leakage and seal the pouching system.

Skin Problems

The skin that surrounds your stoma is called peristomal skin­—it should be smooth and healthy and look like the rest of your skin. If it is red or irritated, you should address the problem immediately. If you have problems with adhesive residue or are unable to get the area completely clean before application, you may want to try to use an adhesive remover.

Odor

New sound and smells coming from your pouching system can be embarrassing and induce anxiety. Many new pouching systems have filters to neutralize the odors caused by gasses in your pouch. What you eat can have an effect on gasses you produce. It is recommended to avoid carbonated beverages and limit high-fiber foods. If the filter in your pouch gets blocked, you may experience ballooning. Ballooning happens when air from your stoma cannot escape the bag and it fills up like a balloon. Depending on the type of system you are using, you may want to release air from it throughout the day. If the odor is strong when you are changing your pouch, you may want to try a lubricating deodorant which can help mask, the smells during a pouch change. Simply place 6-10 drops into the pouch when you change and empty it and spread it around inside the pouch by rubbing the inner sides together, avoiding the filter. This helps the output to make its way more easily to the bottom of the pouch.

Should you need more assistance dealing with a problem you are having with your ostomy, consult your healthcare professional. For more assistance and personalized support, check out Coloplast® Care, which is an ongoing comprehensive support program that gives people with an ostomy support throughout their life.

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.

The Support We Get From Support Groups

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Walk Through that Door and You Might Surprise Yourself

 

By Ellyn Mantell

There are support groups for many issues but until I, myself, was in need, I never gave much thought to what they can provide. We have seen representations on television and in the movies, and they seem to have merit, but I have learned that they can be a lifesaver, or at the very least, a way to begin to live a life.

During all of the over 20 years that I suffered from constant bowel obstructions and abdominal surgeries, I longed for others to tell me “it would be alright.” But there were no “others” to be found…nobody seemed to have what I had, and therefore, I could never ask what I could do, what did he/she do to live a fuller life? And then I had my ileostomy, and everything changed. After my 23rd abdominal surgery,  something happened that hadn’t happened before…I now had the name of something that could actually garner support, and I took to it like a duck to water!

My ostomy nurse, Angela Natale-Ryan invited me to the Union County Ostomy Support Group in New Jersey, and I was quick to take advantage. Little did I know that, fast-forward, I would find a home for myself, become president for the past five years, and go on to start other support groups. But that is only one piece of the wonderful puzzle I find myself putting together. As president, my name is given to those in need who call the American Cancer Society, or United Ostomy Association of America, or even the local hospitals. The connection I have to so many reaches into every interaction I have, since each new encounter teaches me something.

As much as we are all individuals, new members are frightened and worried, hesitant to walk through a new door, and filled with misconceptions. Letting someone know “it will be alright” because we have all been through it, is invaluable. And most importantly, we welcome each new member of the group with open arms.

At the beginning of our meetings, we go around the (ever-growing) group and say our names and type of ostomy we have, and if we are new ostomates. Additionally, I ask if anyone has any issues that they would like discussed, and we will circle back to those after everyone has a chance to introduce themselves. Our Wound Ostomy Continence nurses address the medical concerns, and we discuss lifestyle concerns with each other.

I have garnered a wealth of knowledge about the medical, the physical and daily life of living with ostomies. I also now know where to gain more information and knowledge when needed. Rarely does too much surprise me in those areas over these past five years. But I am so appreciative, and feel forever treated to the magnificence of the human spirit, as I see the emotional growth that takes place as we lean on each other for support, and I can count on that!

 

United Ostomy Associations of America (UOAA) has over 300 Affiliated Support Groups around the country. To find support and information near you click here. To start or affiliate an existing group with UOAA click here. 

Managing Humidity and Extending Pouch Wear Times with an Ostomy

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For people living with an ostomy, humid climates and certain situations may cause concern in pouch wear time. The me+ support team has put together some useful tips just for you to help optimize your pouch wear time.

Feel more confident when facing humidity with these tips:

  • Review your peristomal cleaning routine. Using baby wipes or cleaners that include moisturizers may affect your pouch seal in hot, humid weather. Clean your peristomal skin with warm water and a simple bar of soap.
  • Try a barrier wipe or spray before applying your pouch. Barrier wipescreate a film that protects the skin from the damaging effects of adhesives, body waste and enzyme attack. Using barrier wipes in combination with a protective powder may help extend overall pouch wear time.
  • If you are having an issue with tape collars starting to peel, try adding strips around the skin barrier where it meets the skin for extra security.
  • Using a seal with your pouching system may help absorb additional moisture. Seals can help prevent leaks and skin irritation by forming an absorptive barrier around your stoma.
  • Try using an ostomy belt or wearing an ostomy wrap to help keep your pouch secure and supported against your body, which may help increase wear time.
  • You may find in humid climates and situations that you need to change your pouch more often.

If you have any other questions in regards to humidity and potentially extending pouch wear time, requesting samples, or where to buy ostomy products, contact the me+ Team at 1-800-422-8811 or cic@convatec.com.

 

me+™ Answers provides tips and tricks for living with an ostomy.

Find in-depth articles on topics like diet, activity, travel, relationships and everyday life. Helpful information for people living with a colostomy, ileostomy or urostomy.

 

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.

 

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.

Together We Can Change Lives

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Give to Make an impact in the ostomy community

 

Your support makes a difference in so many lives. People often turn to UOAA in times of concern and uncertainty. UOAA’s staff and volunteers provide assistance every day to people across the country who are seeking knowledge, resources and support as they navigate their way through living with an ostomy. Your donation to our mid-year campaign will ensure UOAA will continue to be a trusted resource for caregivers, family members and medical professionals. Please help us reach our fundraising goal of $110,000 this year.

“Thank you for all your support. Probably without my local support group and UOAA, I seriously doubt I would have been aware of a WOC nurse or a method to receive the medical treatment I thought was necessary. Now…I will be able to live a healthier, productive life.” J. R.

General Fund

Support UOAA as we continue to create and share our educational materials, connect people to affiliated support groups, maintain our informative website and engage with medical professionals who care for the ostomy community.

“I appreciate the support of UOAA. We use the website in the clinic as our major resource and the booklets are great for the staff in-services. I have given copies to the medical students when I give the ostomy lecture during their trauma rotation as well…” C. C.

Advocacy Fund 

Your financial contribution will help engage UOAA and its Advocacy Network (over 650 supporters) in legislative advocacy efforts.

“Just want to tell you what a wonderful advocacy tool you have provided to ostomates and affiliated support groups around the country…I can appreciate how the product of your work will encourage individuals and groups to move ahead with advocacy.” P. M.

Ostomy Awareness Fund 

Assist UOAA in dispelling the fear of undergoing this life-saving and life-restoring surgery. Attendees of our biennial conference (join us August 6-10, 2019 in Philadelphia) have the opportunity to learn from top medical professionals, network with fellow ostomates and share their life experiences.

“Keep up the good work! I have had an ileostomy since 2002…I am retired and now perform at festivals and enjoy life! Life begins at whatever age you shake off your fears and decide to fulfill your reason for being!” K. T. H.

With your donation we can empower people living with an ostomy or continent diversion, promote quality of life, and continue our work to erase the myths and stigma surrounding this life-saving surgery. Together we can change lives.

Sincerely,

Susan Burns
UOAA President

Click here to donate today or learn more. United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) charitable organization and all donations are tax deductible.  UOAA has a GuideStar Gold Seal of Transparency.

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. 

Makeda Armorer-Wade’s Story

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Living 10 steps from death’s door can take an emotional toll. My name is Makeda Armorer-Wade and I am an inspirational life coach and best-selling author. In July 2010, I received my first ostomy and January 2016, I received my second. While both surgeries were difficult physically as well as emotionally; my first was more difficult than the second, because I was not included in the decision in any way. It was an emergency surgery following a resection surgery a week earlier. The decision was made during a follow-up test and they were actually drawing on my belly in the elevator on my way up to the room. It landed me in the ICU and 10 steps from death’s door.

The second ostomy surgery was a decision that I made based on the recommendation from my GYN and surgeon. I was so debilitated that this was my only option. So although it was very difficult, it was less traumatic than the first, because I was involved in the decision and I thought I knew what I could expect.

I went to the United Ostomy Associations of America (UOAA) and read everything that I could. I went to what I call, “Ostomy School.” I did my best to connect with patients who were having a similar experience. Because I have lived with a Crohn’s disease diagnosis from the age of 16; I’ve understood the necessity to research and learn all that I can to manage my condition. Crohn’s disease was not a common diagnosis at the time I was diagnosed, and giving up wasn’t an option for me. Connecting with others and gaining knowledge was freeing. The more I learned, the more comfortable I became with living and embracing life with my new friend (ostomy) Rosebutt Buttercup. Yes, I named her. I was able to support new ostomates by participating in the monthly Mt. Sinai post-surgical support group.

Having my second ostomy has given me the freedom to go back to work, take care of my family, swim, cycle, attend social gatherings, participate in community service and travel. Sometimes listening to the despair of my fellow ostomates and experiencing my own despair at times, for lack of knowledge is what spurred me into action. I wanted to be an example, that there is still life to be lived after an ostomy. Our mindset is important. Where our mind goes, the body follows. Life is what we make of it.

As an author, coach and public speaker. I use my platform to share my story, as evidence that life can be all the things that you are open to making it. I am advocating for sponsorship to release a course that will be available for a small fee, to anyone who has an ostomy, considering getting one or a caretaker of someone who has one.

The biggest positive about living with an ostomy is understanding that without it, I would not be here. The first one was reversed, but as I moved toward having my second one I knew enough and it was the only way. I made the decision to move forward and I am not looking back. I had to embrace that I was enough and the new possibilities for my life were endless.

I realized that as long as I follow my P.L.A.N.(c), I have fewer challenges. I Prepare by anticipating each scenario; I Let go of Shame for all of the things that I can’t always do; I Ask for help when needed; and I Never give up no matter what. Repetition breeds mastery.

So, I share with others that having an ostomy is just an alternative way of going to the bathroom. We all have to go the bathroom. But now, I have the benefit of having more control over when I go. An ostomy is life-saving. An ostomy is an opportunity to really live your best life on purpose.

And while you may not feel that way in the beginning. It does get better. My advice as an experienced ostomate, is to get as much information about your surgery prior to getting it, if time allows. Speak to people who are successfully living with and managing their life with their ostomy. Read, watch videos and ask as many questions as you may have. And then work your P.L.A.N.(c). Be inspired, Be encouraged, Be hopeful. I believe in you. The possibilities are endless.

Singer’s Ostomy Past Leads Him to Partner with UOAA

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Grammy award-winning recording artist speaks out for ostomy awareness and support

The emotions all came flowing back. While touring at a radio station earlier this year in Louisville, Kentucky recording artist Damon Little heard of the tragic suicide of a 10-year-old boy Seven Bridges. There was a part of his own story that he had just recently felt compelled to reveal for the first time ­– he too had lived with a colostomy as Seven once did.

Grammy-winning recording artist Damon Little had an ostomy as a child and is now part of an outreach effort with UOAA to promote ostomy education and awareness.

“This boy’s story was my story. The feelings of isolation and pain of endless surgeries” says Little who had an ostomy for most of his youth until a reversal at age thirteen. Though many young ostomates are now encouraged to be active his teachers and parents at the time sheltered him from sports and other children, because of his ostomy.

Earlier in the year while working on a new inspirational song “Be Alright,” he could not shake the feeling that something was missing. Still unaware about Seven’s death he was inspired to record a testimony about his past on the track. It felt like it was a natural fit for the song’s powerful message.

After learning of Seven’s death the song seemed like fate and Little also wanted to do more to help people living with an ostomy. He and his wife reached out to  United Ostomy Associations of America (UOAA) to see what could be done to help the next person in need.

Ostomy Outreach

UOAA is now working with Little to spread the news of our 300 affiliated support groups, national advocacy program, and free educational resources available to all those seeking ostomy information and support. He is speaking out live on radio interviews and on stage at events around the country. His story is already touching people and compelling them to do more.

At an appearance in Elizabeth City, North Carolina a hospital caseworker asked for UOAA brochures to share with patients and a man living with an ostomy who was at the gathering bravely spoke out about his story and in support of UOAA’s mission.

Though he is best known for his Gospel music, Little has also agreed to record a non-denominational uplifting version of his song “Be Alright.” We hope this speaks to all those who may be struggling with their ostomy or other issues regardless of their background. Look for that to be released in a few weeks with a special shout-out to UOAA.

A Famous Musical Family

Little, a native of Baltimore, got started singing when he was just five-year-old with his family group consisting of his brothers and cousins. His first recording was with his uncle the legendary Clarence Fountain of The Blind Boys of Alabama. The Blind Boys of Alabama have been celebrated around the world and played for three U.S. Presidents.

In his own music career Little has spent weeks on the top 10 gospel charts and top 30 on urban AC billboard. He has traveled with numerous national and international tours performing for audiences as large as 300,000 people.

Little’s sound has been compared to the legendary Al Green and the late Philippe Wynne, the Spinners former lead singer.

Fighting Stigmas

Little has found that the volunteers of UOAA and many in the ostomy community are equally shaken by the suicide of young Seven and want to do much more to help end existing ostomy stigmas.

By joining forces with UOAA Little wants the public to know that ostomy or continent diversion surgery can occur at any age, and that often the emotional scars take the longest to heal. “Most people with an ostomy who connect to the support and education they need live full, active, and healthy lives,” says UOAA President Susan Burns, a longtime ostomate. “Many people don’t realize that with some help they can swim, play sports, work, be intimate, and fully embrace a second lease on life.”

Little is partnering with UOAA to reach out to communities everywhere, particularly underserved populations to dispel ostomy stigmas and connect people in need with support and educational resources. He’ll also serve as UOAA’s Ostomy Awareness Day Champion on October 5, 2019. Events include the Run for Resilience Ostomy 5k that will raise awareness in nine U.S. cities.

Most importantly, Damon Little wants you to know it will “Be Alright” and to embrace the life ostomy surgery has allowed you to have.

Connect with Damon Little:

Facebook @IamDamonLittle

Twitter: @IamDamonLittle

Instagram: @IamDamonLittle

Youtube: Damon Little Music