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LeeAnne Hayden’s Story

It’s Ivan’s 4th Birthday!
Four years ago today my amazing doctors, Dr. Leslie Demars and Dr. Joga Ivatury removed a huge tumor out of my pelvis and I woke up ALIVE and in a colostomy which I named (Ivan) after Dr. Ivatury, for life.
The first thing I asked Dr. Ivatury when I woke up was “did we get the f#@%r?” He smiled and smiled and said yes.

The next thing I asked was “am I in a bag?” He reluctantly said “yes.” My reaction? “Ok now let’s get me out of here so we can go to California.” I was working on a Tyra Banks product line at the time and did not want to miss the opportunity.

I was not always so positive. When I found out I had cancer in 2015 and would possibly be in a colostomy bag for life, I was devastated, to the point where I told my doctor “do NOT put me in a bag” so many times that he had to yell at me and say I have been up nights thinking about your surgery, I have no intention of putting you in a bag HOWEVER my job is to SAVE YOUR LIFE. So well, he was right.

I had such a different view on life when I woke up. God left me here to do some work and I was not going to let HIM down by playing small. I was going to live my life HUGE and give back to this world as much as I can.

I did allow myself to have strong feelings and concerns. “What if it smells, or makes noises or someone bumps it?” I would cry after cancer, but life was not over yet. What am I supposed to learn from this lesson and from what I am going through? It took me a lot of work to get to be okay. We got this one life.

I got up and forced myself to get out anyway. It helped so much that my kids, parents, and sister along with my husband and friends were supportive of me along the way.

I wanted to get back to doing the things I had enjoyed before cancer. One love was competing in Fitness America and WBFF shows in 2010 and 2011, where I placed in the top five in one of the shows I did. I knew I needed to love my body again and decided to tell the world in a live video to let people know to love the body you were given.

LeeAnne Hayden competes with her colostomy pouch and all at the 2017 America Fitness weekend in Las Vegas.

I was talking with my husband and friends and said I think I want to compete with “Ivan.” The second it came out of my mouth everyone was so supportive. I was sponsored for my training, plane, suit, costume, all of it. When I got there after months of training I almost didn’t want to do it. However, I knew I couldn’t let my fear stop me, I had to show everyone what I preached. The costume was great. It was a pair of wings that I could open and expand. I was shaking when I took my first steps out on that stage, I took a deep breath and opened the wings, hit my pose and completely teared up when everyone in the audience stood up clapping, screaming and some of them were crying. (Gosh I am starting to cry writing this) It was the most surreal moment ever. I felt amazing and supported and forgot I even had Ivan while I hit all my posing and walked off the stage to my friends in the back screaming and hugging me. It is a moment I will never forget.

There is such a stigma to ostomies, I have heard stories of how people have given up their lives because they didn’t want to be in one. I think we all need to be more vocal about it. So many more people could be saved. Thank you to UOAA for what you do with ostomy awareness!

That’s the way I’ve spent these last four years and I can’t wait to see where my life goes from here! I want to bring everything I have personally been through to all of you so that you may grow and live the life you want and deserve! Huge thank you to my wonderful doctors, my amazing family, my friends, all of you, and especially to GOD for allowing me to remain.

Whatever you want to do in life hope you run for it.

 

LeeAnne Hayden blogs about her life here and produces the LeeAnne in the City Podcast.

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Ostomy Self-Care and Wellness Tips for 2020

By Elaine O’Rourke

During the winter of 2005, I went from being an active, strong, 35-year-old yoga teacher to being completely debilitated, feeling like I was 100 years old and barely able to move or walk.

An extreme flare-up of Crohn’s disease resulted in a temporary ileostomy which was then made permanent after a year. I was down to skin and bones and had lost most of my muscle mass. My hips and whole body hurt when I slept as I was so skinny. There was very little that I could do. My body just needed to rest as it took too much energy for anything else.

When I began to regain my strength after my temporary ileostomy, I had a renewed appreciation for walking and what a good simple exercise it is. Just getting out for fresh air, step by step, seeing people and walking the beach. I had missed simply going to shops. Ahhh, to be able to move again, what a gift.

I had never considered going for my daily walk as a “gift” until I couldn’t do it. For many people, including myself, it’s not until things start going wrong that you realize how much you take your health for granted.

As I recovered I was able to slowly get back into my yoga practice and doing everything that I wanted to do. In fact, last year I started surfing which is now my greatest passion. It was previously the one thing I thought I could never do with an ostomy.

My point being, having an ostomy does not mean you can’t exercise or do sports. Just do them mindfully and within your limits. Taking good care of yourself is now of utmost importance. Real self-care not only addresses how we take care of our physical bodies but also how we deal with our emotions and how we think. After all, everything is connected.

Life with an ostomy has a lot of pent-up emotions, thoughts, and challenges. The physical body also holds on to memories and traumas within its cells. This is why you may experience or even hear of people who recall things when getting a massage, or you might start crying when you get bodywork done or when you are moving mindfully in a yoga class. The “feeling experience” is providing a release for these memories.

In my program “Surviving to Thriving: Overcoming Ostomy Challenges so you can Live a FulFilling Life” I focus a lot on the mental and emotional issues that occur but also on the importance of keeping active and making healthy lifestyle choices. As you journey into the New Year and decade what are the more tangible things you can do for your physical well-being? We all know that New Year’s resolutions go out the window by the second week in January, or that they never happen at all.

Instead, consider doing things that will contribute to your health and happiness and set a plan in place. If you find it hard to keep yourself motivated or don’t know where to start then reach out and contact me.

Strategy tips for self-care

1) Move your body
Buying a gym membership is useless– unless you use it! Our ancestors did not live sedentary lives, yet, these days in general, we are very attached to sitting around. Many people work at desks, sit in cars commuting and then sit on the couch to chill out! But our bodies are designed to MOVE.

Tip: Get up and walk around more, even set a chime to go off on your phone to remind yourself. As mentioned, walking is a great way to keep things moving and it’s free. Even a quick five-minute walk is beneficial. Meet a friend for a walk instead of coffee, or both! Move your arms over your head more. Add in some simple stretches. Basically, MOVE as much as you can as that is what our bodies are designed to do.

2) Food choice
If we think we are going to be “depriving” ourselves of something, then we will do anything we can to sabotage our best intentions. For example, If we say we are “giving up chocolate” then chances are we become obsessed with thinking about chocolate and our resolution only lasts a day! Your body is like a temple and keeping it healthy requires the right choices. This will affect your ostomy output, energy levels, muscles, organs, bones and joints.

Tip: Focus on adding in certain foods that you know will be healthier for you. Hint – these foods are mostly in the fresh produce sections of the supermarket. Before you eat and drink ask or even visualize how your body will respond, how your organs will feel, how well your GI tract will digest. Eat slowly, chew and enjoy your food. Notice how it affects your system, energy levels, and your ostomy output.

3) Make it fun
If you dread doing something, then it won’t get done. So find something that is enjoyable. Not everyone likes exercise or sports but there are many different ways that you can treat your body with more kindness.

Tip: Dancing is a great way to move. Maybe go out to hear live music where you can move on a dance floor, or take a dance class. Put music on at home that energizes you. Walk up and down the stairs a few more times. Use a fitbit watch as a way to incentivize yourself.

4) Schedule time for yourself
There are a lot of distractions that pop up during the day and before you know it, you haven’t done anything you intended to do and the checklist is still staring at you.

Tip: Schedule in your planner when you are going to do your (walk, fun movement, cardio class, yoga, meditation, etc.) Be consistent and try and have it at the same time and on the same days each week.

5) Know that you deserve it
There is nothing like a promise of a “treat” or “something special” or to plan out “bribery” if you do something! Self-discipline comes more naturally to some but it takes practice.

Tip: As you decide the new ways you are going to do things in 2020, also give yourself a promise of a self-care present when you complete your goals. As you try more nutritious food, exercising, moving your body (because that is what it is supposed to do) then treat yourself to a massage, tickets to a show, a work-out outfit (that you now must have because you actually enjoy exercise) a good book, and so on!

 

Elaine O’Rourke is the creator of the online holistic program “Surviving To Thriving: Overcoming Ostomy Challenges So You Can Live a FulFilling Life”. She is a certified Yoga Therapist & Teacher since 2003, Sound Healer, EFT & Reiki Practitioner, Recording Artist and International Retreat Leader. Her lighthearted and fun personality shines through her teachings/programs as she loves to inspire others. She is a contributing writer to the national Phoenix Magazine, presenter at the UOAA National Conference and speaker at Girls with Guts retreat.
A free guide is available: ‘3 simple ways to eliminate fears about your ostomy” by visiting Elaine’s website
www.ElaineOrourke.com
Elaine@ElaineOrourke.com

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10 Advocacy Happenings Await You at UOAA’s National Conference

Summer is quickly approaching and before you know it we will be in Philadelphia at UOAA’s 7th National Conference. With so many new and exciting things planned it is sure to be the best ever! I know whenever I attend a conference I plan well in advance and create my own personal schedule to ensure I do and see all that is of particular interest to me.  This includes conference sessions, social activities and taking some time for local sightseeing in a place I may never have been before. I also always go out of my way to try a new food or beverage native to a particular city or state and in this case it will be an iconic “Philly cheesesteak”.   

As UOAA’s Advocacy Manager I’m very excited that this conference is being held in Philadelphia, a city so very rich in history and quite frankly home to our country’s first advocates.  Here is my twist on ways you can take advantage of this city and our conference, if you have a soft spot for things “advocacy”-related:

  1. Be sure to sign UOAA’s Ostomy and Continent Diversion Patient Bill of Rights during Exhibit Hall hours at the UOAA booth. These signatures will be collected for potential use in advocacy efforts to improve quality in ostomy health care. You also can see one of the 12 surviving original copies of the US Bill of Rights at the National Constitution Center while in Philadelphia.
  2. Pay tribute to our country’s first advocates and visit the Independence National Historic Park to walk in Independence Hall where our founding fathers signed the Declaration of Independence on July 4, 1776.
  3. Celebrate your independence and and see the most famous cracked bell in American history – the Liberty Bell.  You can see it for free at the landmark Liberty Bell Center.
  4. Calling all superheroes!  On Wednesday, August 7th at 2:45 pm attend the UOAA Advocacy Session “United Ostomy Advocates to the Rescue”! Come hear first-hand from some of UOAA’s advocates on how they use their “superpowers”, and also learn more about current advocacy efforts underway at UOAA. Leave our national conference empowered to make a positive difference!
  5. Many times in advocacy we face an uphill battle and feel like an underdog. For decades now Philly has been known for the ultimate underdog tale in the Rocky movie series. Show your resilience and run/climb the infamous Rocky stairs at the Philadelphia Museum of Art.  There are 72 stone steps and at the top you can chant “Yo, Philadelphia! I did it!”. Or you can take a picture at the statue of this legendary “Italian Stallion” located near the bottom of the steps.
  6. Philadelphia is known as the “City of Brotherly Love”.  Show your love for the ostomy community and go to Love Park to get a picture at the “LOVE” statue designed by Robert Indiana.

    Love park

  7. Be sure to stop by UOAA’s booth in the Exhibit Hall to pick up some of our self-advocacy tools and educational resources for use when you get back home in your own advocacy efforts.
  8. When it comes to advocacy and activists I can’t think of a more wiser and inspiring person than the fascinating and influential Benjamin Franklin! Not only was he one of the founding fathers of the United States, but he was an author, politician, postmaster, printer, inventor, scientist, diplomat and statesman. Of interest to the ostomy community is that he was the inventor of the flexible urinary catheter and founded the first public hospital!  If you have time, visit the Franklin Science Museum or just drive by the Benjamin Franklin Bridge. As an advocate I am inspired by so many of his famous quotes. I often say the key to advocacy is not only raising awareness and educating others, but also patience and perseverance.  Here are a few of my favorite quotes by Ben Franklin:

“Tell me and I forget, teach me and I may remember, involve me and I learn.”

“He that can have patience can have what he will.”

“Justice will not be served until those who are unaffected are as outraged as those who are.”

“Energy and persistence conquer all things.”

    9) On Saturday, August 10th, at 2:15PM, please pop-in to contribute to UOAA’s first-ever research study by completing a short survey.  This data will help us make improvements to the underserved ostomy population. Upon doing so, you will also be entered into a drawing to win a prize!

   10) Join us during the conference Closing Ceremony at 3:30PM on Saturday, August 10th where we will be recognizing for the first-time the top advocate in the ostomy community! The Mighty Advocate Award, sponsored by UOAA, is a new biennial award intended to honor one individual for his/her significant accomplishments and contributions to support UOAA advocacy efforts and/or has brought greater ostomy awareness in the United States. Your presence will help make this a special moment in our advocacy history!

 

In conclusion, I’m excited to put a name to the face of the many advocates who have emailed me or have worked with me on advocacy efforts over the past couple of years, and meeting more of the people we strive to make an impact every day in our work at UOAA. See you in Philly!

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Singer’s Ostomy Past Leads Him to Partner with UOAA

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

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Intestines Are Soooooo Overrated

UOAA conference speaker strategically uses humor to help ostomy patients

By Ed Pfueller, UOAA

If you’re a patient of Janice Beitz, PhD, RN, CS, CNOR, CWOCN-AP, CRNP, APNC, ANEF, FNAP, FAAN,  she will likely look you in the eye and know when to employ humor and when not to. If you’re in a rut you may get an ostomy joke to break the ice. “You think this bag is full of crap? You should see my bother in law,” she once quipped, breaking down all barriers for a man struggling to adjust whose brother-in-law seemingly fit the description.

Dr. Janice Beitz is a longtime WOC Nurse and educator who will speak on the power of humor and hope in emotional healing after ostomy surgery.

Ostomy surgery and chronic illness is not a laughing matter, but how you handle it can be a key to your success. It does not seem to be a coincidence that some of the most well-adjusted ostomates tend to have a sense of humor. Humor can change a negative mindset for you and those around you.

Dr. Beitz has over 40 years of nursing experience in acute, sub-acute and outpatient care settings. She’s explored the science behind laughter and health in academia and has seen it in patient settings. She will be a featured speaker at UOAA’s National Conference in Philadelphia this August.

Her talk is entitled, Intestines Are Soooooo Overrated: Psychosocial/Physiological Issues For Ostomates. She’ll discuss the social, psychological and physical issues of having a fecal or urinary diversion. The session will describe the findings from scholarly work on these areas of interest. Strategies for ostomates to achieve a high quality of life including therapeutic use of humor will be emphasized.

Dr. Beitz also teaches the next generation of WOC Nurses as the director of the Rutgers University Camden Wound Ostomy Continence Nursing Education Program (WOCNEP). Students she has taken to visit the jovial and globetrotting members of the Ostomy Support Group of Philadelphia have left in shock. “They turn to me and say these people have traveled more and have a better life than I do!” Dr. Beitz said.

“They are seriously funny,” Dr. Beitz says of the Philadelphia group led by Stanley Cooper that is always laughing and living life to the fullest.

“She is committed to her students. She is committed to all WOC nurses, and she is committed to all patients that need a WOC nurse to ensure they receive the best possible care,” Stanley remarked.

“Janice loves to have a good laugh and will supply a good laugh when she can. When she spoke to our group, she started off with a funny cartoon from a newspaper that she projected on a screen.” Stanley.

“One thing she said to me after her appearance was that she always wanted to enter a room after being introduced to KC and the Sunshine Band singing Get Down Tonight. That is the type of good spirited, happy, energetic person that she is” Stanley said.

Emotional health will be touched upon in many other conference sessions as well. A session geared toward young adults will address body image and self-confidence with an ostomy. Relationships and sexuality sessions will often center on emotional health as well. Overcoming physical challenges often comes quicker than lingering emotional ones.

For those who have not had a UOAA Affiliated Support Group experience, the peer support at conference can provide a sense of camaraderie that gives an enlightening experience for the many who still struggle with the day-to-day challenges of living with an ostomy. Caregivers are also not forgotten at conference with a session on how to cope with caregiver stress.

UOAA’s vision is a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically and psychologically. Connect with us locally, online or at conference and get on a positive path.

At the conference, perhaps we can arrange to turn up “Get Down Tonight” as we welcome Dr. Beitz to give us a laugh and hope about life with an ostomy.

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When to Contact Your Stoma Care Nurse

Your stoma care nurse has the specialized training to help you care for your ostomy and address any issues that arise. These professionals are also known as “WOC” (wound, ostomy, and continence) nurses. Stoma care nurses are there to help you make a smooth transition after surgery, and can give you the training you need to care for your ostomy at home. You should consider them your “go-to” resource for ostomy care education, consultation, and troubleshooting.

In honor of WOC Nurse Week, celebrated every year in mid-April, it is important to recognize the ongoing role that stoma care nurses can play in your ostomy care.

When to Contact Your Stoma Care Nurse

Not every ostomy care challenge warrants contacting your stoma care nurse, but certain issues are causes for concern and should be assessed by a trained professional. Connect with your stoma care nurse if you notice any of the following problems.

If you have a colostomy or ileostomy, call your ostomy care nurse if you notice:

  • Skin irritation
  • Recurrent leaks under your pouching system or skin barrier
  • Excessive bleeding of your stoma
  • Blood in your stool
  • A bulge in the skin around your stoma
  • Persistent diarrhea
  • Diarrhea with pain and/or vomiting
  • A stoma that appears to be getting longer

If you have a urostomy, call your ostomy care nurse if you notice:

  • Any sign of urinary tract infection
  • Skin irritation
  • Urine crystals on or around your stoma
  • Recurrent leaks under your pouching system or skin barrier
  • Warty, discolored skin around your stoma
  • Excessive bleeding of your stoma
  • Blood in your urine
  • A bulge in the skin around your stoma
  • A stoma that appears to be getting longer

Finding a Stoma Care Nurse and Showing Your Support

If you do not have a stoma care nurse, you can search to Find a Nurse using your state or zip code on the WOCN Society website. This feature is also accessible by clicking the “Resources” icon in the Peristomal Skin Assessment Guide for Consumers, a free, easy-to-use, digital tool designed to help teens and adults living with an ostomy identify common skin problems, provide next steps for care or management, and prompt when it is appropriate to seek support from a WOC nurse.

How Hollister Secure Start Services Can Help

Hollister Secure Start services offer free customized ostomy support for as long as you need it, regardless of the brand of products you use, including help using the Peristomal Skin Assessment Guide for Consumers. Call us at 1.888.808.7456.

 

Incredible WOC nurses make a daily impact in the lives of people living with an ostomy. Show your support for all they do during WOC Nurse Week (April 14-20, 2019) by sharing a story or photo on social media using the hashtag #WOClove.

 

The Peristomal Skin Assessment Guide for Consumers was funded through an educational grant from Hollister Incorporated.

The information provided herein is not medical advice and is not intended to substitute for the advice of your personal physician or other healthcare provider. This information should not be used to seek help in a medical emergency. If you experience a medical emergency, seek medical treatment in person immediately.

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.

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Learning to Love Your Body – Stoma and All

Following your ostomy surgery, you will no doubt have an adjustment period of figuring out your new routines and schedule. You will be learning about your appliance, how to use it, when to change it, and how it works. Although there may be frustrating and discouraging days, as you get the hang of your body and the newness of it all, you may also find yourself fascinated with your body’s adaptability. Some of the most resilient, inventive and strong people are ostomates who are changing the way people think by helping to reduce shame around ostomies as well as creating networks and communities to encourage and support others in similar situations.

Body Love

We live in a world where we are bombarded on a daily basis by media showing us advertisements of what beauty should be. The unreachable goals are already set, and then you throw in an ostomy? How in the world are we supposed to love our bodies when we feel so different? Building confidence begins with you. It begins with self-love and embracing your uniqueness. This can take time, and giving yourself the time to heal (both literally and figuratively) and come to terms with the changes and the new daily rhythms will go a long way in boosting your confidence. The great thing about confidence is that it is contagious. Others can feel it in the way you talk, walk, and are proud about yourself and your body, and when they sense it, it transforms the way they see you. This doesn’t mean that self-love is easy and immediate, but it does mean that it is a possible and attainable goal. One of the ways to lead yourself into recovery and learning to love your body is to get active. Maybe you love to run, swim, or hike in the mountains, or you’ve always wanted to join a gym but your disease was holding you back from the commitment of it. Have you always wanted to learn an instrument, or join a band? There are amazing people out there with stories of how they overcame their fears, and also how they discovered the right product for their unique lifestyle and activity.

Every body is different and being patient with yourself and your healing process is vital, especially within the first few months. While inspirational stories about others can help to normalize your situation, it is also completely normal to feel discouraged and down at times. If you are feeling extreme discouragement or hopelessness, don’t hesitate to reach out to a licensed therapist or a healthcare professional. It is important to be able to share as honestly as possible about your situation so that you can begin to move forward.

Inspirational Ostomates

If you are looking for some inspiration from fellow ostomates, there are many platforms out there with information to connect you with people and resources. Feeling like you need some encouragement in embracing your body and its changes? This video is full of helpful information as well as inspiring individuals just like you. As you begin to enter the world of other ostomates and hear their stories, not only will you be able to relate with them, you will also find that they are paving the way for others to be confident in their bodies and, in many cases, thankful for their ostomy and appliance. Maybe their stories will be the push you need to reclaim your life and find that confidence that you know you have in you. Don’t just stop there, why not become one of the inspirational stories that someone else undergoing a surgery leading to an ostomy can read about? Embrace your new life and body.

For More information, visit www.coloplast.us.

Editor’s note: This educational 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.

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UOAA Advocates in Action

Ostomates Provide Insight to Lawmakers on Behalf of UOAA

By Ellyn Mantell and Michael Quear

Left, Ellyn Mantell with UOAA Advocacy Manager Jeanine Gleba, right, outside New Jersey Senator Cory Booker’s office.

UOAA Representative – Ellyn Mantell

There is so much frustration and dissatisfaction around the government right now, that it is easy to forget all of the wonderful things that continue to be done behind the scenes, and I want to share with you my experience in that regard. On Sunday, March 3, 2019, my wonderful support guy, husband, Bruce, and I traveled to Washington, DC to attend the annual Digestive Disease National Coalition meeting. I was asked to be a Patient Advocate accompanying Jeanine Gleba, Advocacy Manager for United Ostomy Associations of America. She and I have a special bond, since she lives in New Jersey and has attended support groups’ meetings with me, and we both have the same goal, which is increasing awareness and getting the most for ostomates.

After meeting key personnel and greeting other attendees on Sunday night, I felt empowered to be part of Team 5 the next day, when we would go to “the Hill!” Monday morning, following a warming breakfast (which we needed since it was windy and oh, so cold walking up toward the Capitol) and a basic logistics session, we headed to the Hart Building, not actually on “the Hill” but very exciting, nonetheless. I saw the offices of Senators about whom I had read or seen on television…a rare opportunity to be in the “Place Where It Happens”!

Our team was awesome and so inspiring! In addition to Jeanine and my presentation (visual aids are great, and my emergency kit pouch was a surefire way for the Legislative Aides to get the point: the necessity for funding for supplies, etc. as well as not being denied benefits for pre-existing conditions) we had two other Patient Advocates. Carolyn was invited by Megan Glynn, Manager of National Programs for the American Liver Foundation, and she is alive because of a living donor liver transplant. This is quite amazing, since the liver is composed of two lobes. One lobe can be transplanted and both donor and donor recipient’s livers will regenerate. It is truly amazing! Carolyn was making a request her life-saving  medications, which cost thousands monthly, may bankrupt a family trying to keep alive the patient they love…a terrible choice to have to make. Generics and off label usage may make a huge difference, but funding is always the issue.

Cheryl Velba then spoke with the Legislative Aides about her Short Bowel Syndrome, she is a Rare Disease Advocate. Surviving the removal of most of her colon and small intestine, she is one of the few to survive such a severe twisting of her bowel. This life-threatening occurrence, and the damage done to her body includes not only digestive issues but ocular ones, as well. She is asking for certain medications, again, costing thousands a month, be switched for generics or off-label usage. We all urged the aides to impress upon the Senators for whom they worked to limit out-of-pocket costs as well as curb current and future payer tactics to shift costs onto the patient.

The Digestive Disease National Coalition stands for Research of Digestive Diseases; Patient Access to Affordable, Quality Health Care; and Prevention and Awareness of Digestive Diseases. Digestive Diseases are chronic and, in many cases, debilitating and disabling. I was deeply honored to be able to bring awareness to the young aides who may not have known anything about our issues before yesterday, but when we were done, had to have learned another slice of life, the struggles of many…and hopefully, they will impress that upon our NJ legislators, Senator Menendez and Senator Booker.

 

UOAA Representative – Michael Quear

I recently attended the Digestive Disease National Coalition Annual Spring Public Policy Forum as a representative for UOAA. Actually, I participated in a group that was meeting with Congressional staff. My group was made up of Pennsylvania residents; so we met with staff of the PA Senate delegations and selected House Members staff. In my group I was the only person with an ostomy, but I certainly had experience with a digestive disease!

I was diagnosed with ulcerative colitis when I was 14; 4 years later I had my surgery – a total colectomy with a permanent ileostomy when I was 18. It’s hard to believe that was 42 years ago. Plus, I certainly knew my audience. I’d had the privilege of serving as professional staff for 20 years on the Committee on Science Space and Technology in the US House of Representatives.

I know these are busy folks and that we would likely have only 20, at best 30 minutes of their time. (We actually only had 15 minutes!) So I thought what are the points I would like them to remember about life for an ostomate and what impacts what they do by allocating funding and how healthcare policy impacts people like us.

First off, show and tell. When you say the word colostomy most people think a bag filled with et cetera. An ileostomy draws a blank stare. So I took along the appliance I wear, so they could feel it, see exactly what it looks like and how it works.  Using my thumb I explained my stoma. I also explained that despite the revolutionary advances in medical diagnostic equipment, prosthetics and drugs that in ostomy products there have not been many major breakthroughs in ostomy solutions, but research funding targeted for ostomy products could change this.

I also talked about the stigma that ostomates often feel.  In general, an ostomy is something some in the public feel is only slightly worse than death.  I was 19 when I heard someone say, “I’d rather be dead than wear a bag….” And I’ve heard similar remarks occasionally thru the years. As it is national Colorectal Cancer Awareness Month, I mentioned that people who suspected they had a serious gut issue were afraid to be seen by a doctor because of this stigma. I recommended their boss use his public platform to remind people this is a procedure that saves lives, not ruins them.

Finally, the cost.  I told them the cost of my appliance and that some people need to change it daily, others every 4-5 days. Regardless, over the course of a year costs add up. Therefore, it is important that insurance and government programs cover these costs. When Congress fiddles with health care funding and/or policy they need to think about people like me with serious gut disease in general.

Was it a long day? Yes!  Was it useful – I hope so!

But I think it is one that the staff will remember.

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Dating Life

The Black and White of it? Support is Everything.

By Tricia Hottenstein  stomamama.com

I recently shared an article about a little boy who was bullied so badly that after twenty-six surgeries, he decided to take his own life. It hit me so hard. I read it with tears rolling down my face, my heart hurting for his loved ones and my soul hurting for the things he must have felt. I read it after spending a long weekend in the hospital and after undergoing three of four surgeries in just two months. I read it knowing the hurt of bullying and the feeling of people looking at me with any variant of disgust when seeing or talking about my ostomy bag. I read it after writing and sharing what was basically a diary entry of overwhelming emotions. It is by no means comparable, but it made me think a lot about the strong support system around me. I know that my mindset is shaped so greatly by those handpicked few who always have my back and in the midst of this article, fresh in my own rehashed wounds, my gratitude for life and the way it all works out has increased. I can’t be certain I’d have made it through the last few months had they happened to me a year ago when I was already down and struggling. Support is everything.         

I’ve had an ex who was (and still is) really supportive and caring, and one who made me cry and feel worthless in a hospital room. I’ve also had an ex who couldn’t hide his lack of understanding or his overly dramatic gags when he saw me changing my bag. The embarrassment and disrespect was the exact reason why I decided to mention my stoma the very first time I met my boyfriend. I had since decided that anyone who was less than understanding would be an immediate no. I was afraid of dating with an ostomy, but I was no longer willing to feel like a burden or anything less than sexy. I would be okay being single and building myself back up on my own.

And then practically out of nowhere, I was on a date. I was nervous in spite of it going so well, or maybe because it was. I spent many moments of conversation wondering if they were the right moments to bring up the surgery. I speak so freely of my bag to everyone. I answer questions from coworkers, friends, family, and strangers without thinking twice. This is my bag; it saved my life! It is worth talking about. But how do I casually bring this up without awkwardly ending a date? What if his response wasn’t what I wanted it to be? Although, that’s the point, right? I’m old enough, I’ve been through enough. No more on the fence with anything. It is black and white and I’m not moving forward with any more gray.

“Tell me something about yourself that would surprise me.” To be honest, I don’t even remember if he eventually answered the question. All I know is he stared at me. This moment of oh shit in my mind as he was staring at me, half laughing, shocked to be put on the spot. So I just went for it. “I don’t have a colon!” More stares, more shock. I explained the scenario in a nutshell. The disease, the surgery, and the bag I’ve had for several years.

“Well… I guess…that’s kind of shitty, huh?” The words hung in the air before we both laughed. And in all honesty, my reaction to that response could have been a variable one depending on many factors. But really, how better to respond? Because I don’t want someone who will constantly feel sorry for me, or who will treat me any differently. Rather, I want someone who will make me laugh, who will be understanding and upbeat, and who will continue on with the conversation afterward as if it is no big deal. Sure, there were questions to be asked, but not a single one of them seemed to really matter. And there it was, in black and white and bar lights: this glimmer of hope.

As it would turn out, it couldn’t have come at a better time. A few short months later, I was back in hospital gowns and waiting rooms. And not once did he flinch. Not when I delivered awful news, not while he sat next to me in pre-op, not when my bag leaked in the middle of the night or I got frustrated and had tears running down my face. The reality is, most of the time I didn’t even have time to process things before he was reassuring me I’d be okay and distracting me with nonstop laughter.

When I’m in the trenches, when I’m alone, when I think too much, it is easy to go to a place of overwhelming emotions. I have spent more than half of my life with this disease, and surgery went so well that I thought the rest of my life would be smooth sailing. I was finally meeting people who had never known me as sick. It sounds so irrelevant, but it is a huge deal. I remember several years ago when a family member introduced me as “the sick one.” It was intended to be harmless. Intended simply as a way for their friend to put a face to the person they had obviously spoken of. The person undergoing IV therapy, taking twenty-some pills a day, piling up medical debt, and seeing the best physicians while still unable to leave the house most days. It cut through me and it scarred deep. But post-op, there was this moment in life where that was no longer me. Now I was strong. I was an adventurer. I was healthy.

The frustration when that all came crashing down was audible. Suddenly I was right back down to the some of the lowest points in my life. I was again “the sick one.” Somehow even when things had been slowly going downhill, I was blinded enough by the highs to be shocked when I was back to square one. I was angry. I felt sorry for myself and felt alone despite the people around me. I started to prepare myself again for the life full of battles, ready to sink back to that person who laid in the fetal position on the sofa, unable to eat or move or laugh from deep within my belly. I just kept thinking, over and over, that this is my life. I had a whole other vision for it after my ostomy surgery, but this person, right here, in a hospital room getting bad news? This is my life.

Until the person next to me, the person who responded to the news of my ostomy when we first met with a poop joke, responded with another poop joke. The kind that made me laugh so hard that all the ugly tears shook off my face. And as he wiped the remnants of them away, he reassured me. With a few simple words, he reminded me of my actual life. Reality. Yes, I am the sick one. But I’m also the healthy one. In black and white, that is my life. Some days I will be an adventurer. I’ll feel healthy, I’ll laugh, and I’ll enjoy the smooth sailing. And some days I will be sick. I’ll be a warrior. I’ll look for hope and rely on others. And their support will be everything.

 

UOAA Resources:

Emotional Concerns

Sexuality

Living with an Ostomy

 

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Education Amid Tragedy

By Susan Burns, UOAA President

It’s heartbreaking. So many of us are torn apart by the recent news that a ten-year-old took his own life in Louisville, Kentucky. What we know is that he was a kind soul, this boy named Seven Bridges, and he was a victim of bullying. His medical history is also similar to many in our community in that he had an ostomy at a young age. He had an imperforate anus and braved over 20 surgeries in his short life. His mother Tami Charles said he lived an active life with an ostomy and loved swimming and playing as all children do.

In the past year, Tami said his ostomy was reversed but he continued to have some anal leakage and he was teased and ostracized at least in part because of the smell. It is unfortunate that many early news reports perpetrated the stigma that a “colostomy bag” smells and was the reason for the bullying and his despair. Their headline choices were faulty and sensational.

Source: Seven Bridges GoFundMe Page

What we don’t know is what goes on in the mind of a young child and why Seven took the most drastic of actions. His brave parents are taking the rare step of speaking out in this most difficult time. They want other kids suffering bullying to be #SevenStrong and demand that adults take meaningful action. They want all children to understand the dangers of bullying and have already organized local benefit events and forums. We should all be teaching our children love and acceptance of all differences.

Many of you have reached out to me feeling devastated and lost by this tragedy. You are also asking what you can do in light of such sad news beyond reaching out to the family online.

I just ask that you live the mission of UOAA in your daily lives and continue to raise ostomy awareness, advocacy and education in your community. More work needs to be done to fulfill our vision of a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically and psychologically.

UOAA relies on all of you in our community and specifically nurses and physicians to identify families of children who have had ostomies (and reversals) and make them aware of ostomy support resources.

Please spread the word that caregivers, parents and children are welcome at all of our almost 300 affiliated support groups nationwide. We know they may be the only parents or young people in many groups, but we have to start somewhere to build a network and provide a welcoming atmosphere to all at our affiliated support groups. Luckily there are also online support groups for families on Facebook where parents can find each other.

Several years ago we identified pediatric specific resources and education as a pressing need. It is just a start to the work that needs to be done but in the past year we released for your use:

  •  Every child matters! Pediatric Patient Bill of Rights, this is a statement of the rights to which infants, children, teens and their families should receive when facing ostomy surgery. It is a tool to empower parents/legal guardians to advocate for their child during all phases of care. These rights are meant to ensure a positive patient experience and best outcomes to achieve a desirable quality of life for the infant, child, or teen living with an ostomy and their family.
  • Our Pediatric Messages of Hope Brochure, written for parents of children with ostomies, emphasizes the lives of three adults who had ostomy surgery as children who are now living full lives and sharing their messages of hope. You can email oa@ostomy.org for copies. 
  • We also released our Pediatric Ostomy Resources document with links to support organizations, educational resources and teaching/comfort items such as the Awesome Ollie Ostomy Bear.

Online our Ostomy 101 infographic, emotional concerns after ostomy surgery, and surgery-specific ostomy guides are available to caregivers, parents, teachers, and school nurses and administrators.  Our New Ostomy Patients guides are mailed for free to all who need them. Let’s work to get these into the hands of those in need.

We have decided this year to also provide space for families to come together for peer-support and education at our 7th National Conference in Philadelphia in August. The dedicated pediatrics track will feature medical professionals from the Children’s Hospital of Philadelphia. Adults who have had ostomies since childhood such as model Jearlean Taylor will also be speaking to those gathered. In addition, our conference will have a session on the critical issue of emotional healing after surgery and will provide time to develop personal connections with other families.

We also support other organizations beyond UOAA. For years many of our affiliated support groups around the country have raised funds to send children to Youth Rally. This is a wonderful camp for children who have or one day may need an ostomy or intestinal/urinary diversion. We will continue to support their important mission and others in every way we can.

Now is a time of sadness but also a time to recommit to ostomy awareness to fight harmful stigmas. We can all educate not just on Ostomy Awareness Day but in your daily lives. Tell your story in an honest way. Point people to trusted ostomy resources online, speak out against bullying and injustice. Make a personal connection to the person distraught over the prospect of ostomy surgery in a social media post. Certify as an ostomy visitor. The list goes on, and the volunteers, board and staff of UOAA are here to help you change the life of the next person in need. Seven’s parents are speaking out and do not want his death to be in vain, and neither do I.

Our deepest condolences go out to the family and friends of Seven. We can’t even imagine the heartbreak and sadness you must be feeling from this tragedy.

Suicide Prevention Resources

Ostomy Support Resources

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