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 now 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. Seven’s death inspired him to record a testimony about his past on the track. It felt like it was a natural fit for the song’s powerful message.

Little also wanted to do more to help people living with an ostomy. He 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

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.

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.

By Ellyn Mantell morethanmyostomy.com

As an advocate and UOAA Affiliated Support Group Leader, I make it very clear that there is no question or concern that is off-topic for me, and I truly believe that since this is our “new normal” it is very important to be open about all aspects of our lives. The question that seems to most concern new ostomates is about their sexual interactions, and how their partner or future partners will react to their unique anatomy. Since I feel that our anatomy is so beautifully functional (as it may not have been for a long time) I encourage ostomates to look at their ostomy in the most positive of lights. Additionally, it is always my belief that intimacy begins and dwells in the mind, rather than the body.

UOAA President Susan Burns had ileostomy surgery at 36 and knows how important being open about intimacy concerns is. “This is a topic that needs to be discussed but is not addressed enough by health care professionals so it is important to read our guide, find peer-support, or a support group member that is comfortable discussing it,” Susan says.

I believe that intimacy is a beautiful gift one gives to another, and sex is only one meaningful part of the intimate moments people share. I also believe that being intimate with another is a means of communication, a sharing, of thoughts and feelings. This positive reflection of our emotions and adoration for our partner is what bolsters a relationship.

For over two decades, my body was in turmoil, and although I wasn’t faced with a pouch on my abdomen, feeling “sexy” was a transient and very much undependable feeling. Bowel obstructions, bloating, worry all interfered with a positive outlook for intimacy. Couple that with a busy life struggling to be productive in between the medical episodes, and my intestine certainly held me hostage.

My 23rd abdominal surgery, my ileostomy, helped me to begin to have a more predictable life. I am comforted in the knowledge that I function differently, but it is dependable. No longer expecting to be hospitalized on a regular basis, I am free to be productive in so many ways…support groups, motivational speaking, my writing, seeing my family and friends.

The key, however, to the conversations I have with ostomates regarding their own intimacy is to be totally candid with them. Here is what I say…if you are blessed to love and adore your partner, who loves and adores you, then you will travel the road to a joyful connection, enjoying the closeness that you share because you are able to do so. You have the ability to dance together and move together as never before, all the while knowing that your bond is even stronger than you ever thought possible. You are amongst those of us who know that intimacy, that beautiful gift we give each other begins in the mind, and the body just follows along.

Editor’s note. For a complete intimacy and sexuality guide that addresses both physical and emotional issues click here. UOAA’s National Conference in August will also have an expert session on sexuality and frank conversations on the topic for ostomates and a separate meeting space for partners.

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

 

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

Expect More – Take Control of Your Health Care 

Part 6 in Series

 

By Joanna Burgess-Stocks and Keagan Lynggard-Hysell

 

There are many different emotions you may experience as a new ostomate, and it is important to understand that physical and emotional healing after surgery may follow different timelines. We understand that everyone copes with emotions differently. Some people struggle for a long time. Whether you would like to seek individual support from a social worker, therapist, or other medical professional or prefer support from a peer mentor or by attending a local support group; understanding the emotional impact of ostomy surgery and receiving the appropriate support is an important part of taking control of your health care.

 

Witnessing the Emotional Impact- a WOC Nurse’s Perspective

“Hello, my name is Joanna.  I am here today because I am your ostomy nurse”.  

I have repeated that sentence hundreds of times over the last 12 years. I am in the unique situation in that I am meeting you at a pivotal moment in your life, heading in a direction you might never have imagined–facing ostomy surgery. During that initial encounter I am sometimes met with a blank stare, a stunned look of fear and dread, or with complete relief.  Whatever the reaction, I am the person that is there to help you navigate the world of living with an ostomy. I take great care during that initial visit to meet you where you are emotionally, knowing that this is a sensitive topic for you, someone who most likely is not used to talking about the way you go to the bathroom. Soon, however, I will share with you that I too am an ostomate (person living with an ostomy) and have been one for 53 years since the age of three!  As I leave you that first day, I finally see a glimmer in your eyes–hope! A sign that maybe this journey is possible and that you are not alone.

As an ostomy nurse, I have had the opportunity to meet patients in a variety of settings and have worked with hundreds of patients facing ostomy surgery whether it be from cancer, bowel or bladder diseases or from emergent situations.  No matter the reason, the anticipation of ostomy surgery is a step into the unknown and can compound the anger, sadness, and fear about the medical condition that caused you to need an ostomy. As you face these multitudes of feelings and adjust to life with an ostomy, know that you can take control of what may feel like an uncontrollable situation.

 

Facing the Emotional Impact- a Patient’s Perspective

“Good morning Keagan, today a special nurse is going to come and teach you how to care for your ostomy and help with your first bag change.”

A special nurse?–I thought to myself. Why do I need a special nurse to show me how to take care of my pouch? I had so many questions, a multitude of emotions, and I was feeling overwhelmed. So many things were out of my control, my recent diagnosis of Crohn’s disease, my hospitalization, my surgery, and now the responsibility of caring for my ostomy. I felt helpless and was eager for some independence in managing my body.

My WOC nurse entered the room and introduced herself with a smile. As she sat beside my bed listening to my fears and frustrations she explained how we were going to change my pouch. In an attempt to gain some independence, I told her that I wanted to take the pouch off myself and as I lifted the edge of the barrier just enough to see the edge of my stoma and the few black stitches poking through my skin– I lost it. I didn’t want to do it anymore, any of it. I didn’t want my insides on the outside, I was scared of my own body. My WOC nurse stepped right in with encouragement and support and a perspective I will never forget. She said she understood that what I was going through felt unmanageable but that caring for my stoma was something that would allow me to be self-sufficient, and that changing my pouch would give me independence in caring for my health. Since my very first pouch change, I have been encouraged to shift my perspective and to be proactive in the areas of my care where I can take control.

 

Seeking Individual Support

It is important for you to seek the resources needed to understand and work through the emotional impact related to ostomy surgery. It can be very helpful to have someone affirm your emotional concerns as you adapt to life with an ostomy. Most will find their path to acceptance as they physically begin to feel better and become comfortable with the care of their ostomy. If you are struggling with depression, how to tell others about your ostomy, or any part of the adaptation process (including the lack of will to learn self-care), seeking support through counseling can help you address these struggles. A licensed professional has the skills to help you create the life “tools” you need for navigating the unknown, including fears of introducing your ostomy into a new or existing relationship, addressing body image challenges, or understanding the grieving process. You can speak with your physician for a referral if needed.

 

Finding Support in Others

The fear of the unknown can often be soothed by learning from those who have gone through a similar experience. UOAA has approximately 300 Affiliated Support Groups throughout the United States, providing the opportunity for you to connect with others within your community who have also undergone ostomy surgery. To find a local support group near you, visit UOAA Support Group Finder. If you would like to connect with others but prefer to do so through an online format or from the comfort of your own home you can join a Virtual Support Group. Another way to gain support is through an ostomy mentor. Ostomate Lois Fink describes in her book Courage Takes Guts; Lessons Learned From A Lost Colon, meeting her mentor for the first time at a restaurant. The mentor was wearing a very slim dress and Lois felt perplexed, trying to figure out where she was hiding her ostomy pouch!  Lois learned that she could be the same fashionista that she always was while wearing an ostomy pouch and it helped her face her ostomy surgery with more strength and confidence.

To learn how to connect with an ostomy mentor, many UOAA Affiliated Support Groups have certified visitor programs or you can contact UOAA for a list of current ASG visitor programs at 1-800-826-0826.  

 

Our Hope for New and Struggling Ostomates

It is the hope of all of us at UOAA that one day you will be able to look at your stoma and see it as something that was life-altering and maybe even life-changing, but it was also life-giving. Be patient with yourself as you journey through both the physical and emotional healing process and be sure to utilize the available resources to support you every step of the way.

 

Additional Information & Support

UOAA has developed several tools to help you navigate through various informational topics at your own pace. To help better understand what ideally should happen before and after ostomy surgery we have developed the Ostomy and Continent Diversion Patient Bill of Rights. To learn some of the common “ostomy lingo” you can refer to our blog Know Your Ostomy and Know Your Ostomy Pouching System and Supplies. Complete the accompanying checklists and keep them handy for your ongoing ostomy care.

As a new ostomy patient, you may have concerns or face many unknowns. UOAA provides resources to answer these frequent concerns and questions to best equip you in living with an ostomy. Here are a few of the ostomy educational resources available at ostomy.org:

 

The Benefits of Giving Back In Spite of Your Health Challenges

By Lynn Wolfson

We all want to feel like valuable members of our community. However, many times we are held back by personal issues, lack of time or just a complete lack of knowledge on how to contribute to help others. For those who have not had the experience, they do not know the emotional elation that one gets by helping others.

Let me tell you a little about myself. I was born with a genetic disease that prevents my digestive track from functioning as it should. Consequently, I am fed through my heart (Total Parental Nutrition), I defecate into a pouch attached to my abdomen and I catheterize to urinate four times a day. All of this medical equipment did take me years to accept and learn to take care of on my own. However, once I learned, accepted and had my independence back, I wanted to give back to my community.

I started by participating in my local UOAA affiliated ostomy support group. I attended national ostomy conferences and met many people who also had ostomies. I then joined the Digestive Disease National Coalition in Washington, DC and learned how to lobby for Bills which are needed for the digestive disease community on Capitol Hill. There I met many people active in the digestive disease community and joined The Oley Foundation.

Lynn Wolfson is assisted by her service dog Zev as she travels for advocacy and conferences around the country. Lynn has battled Hirshprung’s disease since childhood.

After several years of attending national conferences with the United Ostomy Associations of America, The Oley Foundation, and The Digestive Disease National Coalition, I decided to create my own support group. I named it: The Weston Ostomy Tube Feeding Group. The group meets monthly from August to May and discusses many important issues regarding people with ostomies and enteral/parental patients.

Then I decided I wanted to help my local community. I started going to the Jewish Community Center and learning how to knit hats for cancer patients. I had not knitted since I was a little girl. I was not too optimistic since I have tremors. However, the ladies in the group taught me how to knit on a loom. I now make beautiful hats which I donate weekly to cancer patients. I was really feeling proud of myself.

One week there was a senior fair in the ballroom at the JCC while I was in my knitting group. I took a break from my knitting to go and check out the senior fair. While walking around the fair, I saw “Jet Express” and I stopped and asked about it. I was told that this was a service which the Goodman Jewish Family Services provided to seniors for $100 a year. The service is to pick up seniors and to bring them to medical appointments, shopping or social engagements. They needed volunteers to pick up these seniors. This sounded like fun to me. I called up Pam at Jet Express and signed up.

Since signing up, I have enjoyed taking seniors to medical appointments, the beauty salon, shopping or just spending the afternoon with a senior going wherever they would like. I find the seniors so interesting. I have one senior that has lived in Florida since the 1950s and she tells me what South Florida was like when she first came. Some seniors are here alone. Their children live out of state and they are lonely. I have one senior who I take out to lunch weekly. I find I learn so much from these seniors and I bring them home so happy. As happy as they feel, I always feel happier that I could do this for them.

Left, UOAA Advocacy Manager Jeanine Gleba with ,right, Lynn Wolfson taking part in the DDNC Day on Capitol Hill.

I then found out about The Cupboard – the kosher pantry which services individuals or families who cannot afford groceries, and Holocaust Survivors. The Cupboard is also part of the Goodman Jewish Family Services. I go to the Cupboard weekly to take grocery orders from the clients and help deliver the groceries. Since I cannot carry due to my medical equipment, I have a partner who can carry the groceries when I am delivering. I do the driving. Again, I really enjoy meeting and talking with all the clients. They are so appreciative of everything we do for them!

Many of the clients who are having a difficult time, emotionally, physically or financially are so elated when they see us, as they know they are not alone. I know for myself, that each one of us was given a “deck of cards” on life and there is no one that has received a perfect deck. We all have “rotten” cards. Those people that can overcome these “rotten cards” will be the most successful and happiest. However, as humans, we all need a hand in helping us to overcome our individual challenges.

Once we can master our personal challenges, there is no greater joy than giving back to others. Helping others helps each of us to love life even more and appreciate our individual gifts. Life is a matter of attitude. Those with a positive attitude can not only overcome their own challenges but also help others do the same.

By Tricia Hottenstein

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

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

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

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

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

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

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

I just need a moment.

More on Emotional Health

From Imperfection to Perfection

By Ellyn Mantell

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

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

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

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

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