Tag Archive for: mental health

Caring for an Ostomate with Memory Loss

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By Sarah Biggart (Convatec me+™)

Frequently I speak to callers about the challenges of caring for an ostomate with memory loss. Often time, people who were previously self-sufficient, independent ostomates become pre-occupied with their pouch; sometimes even pulling on it, which could cause numerous issues1,2.

This could be in the future for some of us, and a reality some caregivers are facing now as they care for and support loved ones.

If you are assisting a loved one, and you see them tugging, pulling, scratching or playing with their appliance, the first thing you should consider is that there may be a reason for this behavior. Their peristomal skin may be itching or burning, or they might be experiencing pain or discomfort around the stoma3. For someone who may have trouble communicating, this could be their way of letting you know something is wrong.

If this is a new behavior, contact your local ostomy nurse or healthcare provider. It’s important to rule out any medical issues they may be experiencing.

If the issue is determined to be purely behavioral, we have some suggested tips and tricks that may help as you care for and support your loved one.

Pouch Change Tips1,2,3:

  • Create a safe, relaxed environment. Take your cues from your loved one considering where they are the most comfortable. Maybe instead of standing in the bathroom, try laying down on the bed with soothing music or a favorite show playing in the background.
  • If evenings can be tough, a morning pouch change before eating breakfast may make more sense for you.
  • Keep ostomy supplies organized and clearly labeled for people who may be able to handle pouch changes independently or for rotating caregivers.
  • Use a calendar or the My Ostomy Journey App to track pouch changes. Do not wait until there is a leak to change the pouch. A leaking pouch may contribute to skin breakdown issues.
  • It may be necessary to store pastes, powders and sprays securely, as patients may attempt to tamper with or ingest these items.
  • Try ostomy accessories designed to simplify pouch changes.

Daily Living Tips1,2,3:

  • Many people with memory loss find comfort in routine. Find a rhythm to ostomy related tasks, such as emptying the pouch, and use the same verbiage each time to bring familiarity. Coordinate with the entire care team to ensure everyone is aligned with using similar language and prompts.
  • Staying occupied may help with keeping hands away from the pouching system. Things like puzzles, sorting items and folding something, may be just the thing to help.
  • Try an Ostomy wrap. Employing the “Out of Sight, Out of Mind” principal, a wrap helps to keep the pouch concealed and supported. A good ostomy wrap is made from a soft and stretchy wicking fabric and helps to keep sweat and moisture away from the skin and the wearer cool and comfortable.

Feeling isolated while providing care for loved ones is a common challenge, we encourage utilizing groups for ostomy support.

And remember that caregivers need care too. You may find comfort in your local Ostomy Support group Find one near you on the UOAA support group finder: https://www.ostomy.org/support-group-finder/.

 

Ruth and her family were confused and stressed when they had to take on the care of their 99-year- old mother’s ostomy.

“My mother has had a colostomy for nearly 60 years. She is now 99 years old with dementia, but had been independently keeping up with her stoma and pouch until just a few years ago. When family members started taking on the task of assisting her, we had to scramble to get up-to-speed since we never paid attention to the details of changing her “appliance” or emptying and re-closing the pouch.”

Ruth connected with me+™ to learn more about how to use ostomy products and accessories, and received follow up product samples and ongoing support.

“Erica was compassionate, truly listened to the problems we were encountering with my mother’s situation, and suggested products that addressed each of those challenges. The bottom line is Erica made me feel supported in my mother’s care, and that she cared that our family wanted my mother’s quality of life upheld when other healthcare providers wrote her off due to her age and mental condition. Erica contributed to us honoring my mother’s wonderfully rich and productive life at a time when that’s not evident to a stranger’s eye. We are so grateful for the support we’ve received through Convatec’s me+ Clinical Support Nurse Team.”

 

If you have questions about product sampling or nurse support available through the me+™ program, please contact us at 1-800-422-2211 or cic@convatec.com.  We look forward to helping you soon.

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

References:

  1. DementiaUK, Caring for a person with a Stoma and Dementia. https://www.dementiauk.org/information-and-support/health-advice/caring-for-a-person-with-a-stoma-and-dementia/. Accessed November 13th, 2023.
  2. United Ostomy Associations of America, Inc, Dementia Stoma Care. https://www.ostomy.org/dementia-stoma-care/. Accessed November 13th, 2023.
  3. McGrogan M. How holistic assessment and appropriate product selection will enhance quality of life for ostomates with cognitive impairment. WCET® Journal 2021;41(1):33-35

Matt’s Story: Living Life Intentionally with Short Bowel Syndrome

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At sixteen, I got my first job doing janitorial work at an amusement park. As you might imagine, I wasn’t thrilled by the work, which included cleaning the restrooms. I remember coming home and complaining to my mother that I wanted to quit. Although I didn’t realize it at the time, her response would soon take on important meaning for me and the way I would approach the rest of my life. She said, “No, honey, you can’t quit. Our family does NOT quit.”

Her message of perseverance was never more critical than following the moment that changed my life forever – a turning point that resulted in my diagnosis of short bowel syndrome (SBS), a serious and chronic malabsorption disorder. Since that moment, I have had to show up for myself every day and make the decision to never quit.

In October of 1999, during the summer between my sophomore and junior years of college, my family’s car was hit head on in a two-lane highway when someone crossed the center line and struck us. I was in the backseat with my then-girlfriend (who is now my wife) buckled in with a lap belt when we were struck. The seatbelt wrapped around my waist and caused me to lose blood flow to my intestines, which then had to be removed. I was left with no absorptive function and diagnosed with SBS. Though some people may arrive at an SBS diagnosis as a result of other gastrointestinal (GI) conditions, my introduction to SBS was abrupt. One day I was a college basketball player and homecoming king. The next I woke up in the ICU being told I would likely never eat or drink again.

The accident left my wife similarly injured — and also diagnosed with SBS — while my mom and stepdad also suffered injuries. Following the accident, our family church would bring food to the house to help out, only I couldn’t eat it. Seeing those casseroles had always been a sign of care, but in those early moments it was torturous. Getting the care I needed early on was a struggle – so much so that my grandma, an amazing supporter of mine, was one of the first people to step in and learn how to administer my total parenteral nutrition (TPN). I’ve been on TPN every night since then.

Due to my SBS diagnosis, for nearly two years, I also needed a jejunostomy, which is an opening created through the skin into the jejunum (part of the small intestines) that can be used for a feeding tube or as a bypass during bowel resection. The sudden need for an ostomy was difficult to accept at first, as I adjusted to my new life with SBS. As time went on and I finally became a bit more comfortable with my ostomy, I remember landing an interview for an internship I really wanted. However, I was so nervous during the interview that my sweat actually caused my ostomy to leak. Although I got the internship, which was a big step towards my personal goals, the experience was a learning curve in becoming confident in the balancing act I’ve had to develop over the years.

I was able to have the ostomy reversed before my college graduation and even graduated on time – a huge victory in the early stages of my SBS journey! But despite triumphing over those physical challenges, I had more hurdles to face, particularly in terms of my mental and emotional health.

For so long I had identified myself as a basketball player, an athlete, and in a single moment I was told that I would never play again. I cannot describe how devastating that was to hear. I wanted to fight, to call on the determination that had been a large part of my high school and college athletic career, but it was so hard to have that motivated mindset after being blindsided by a diagnosis of a rare disease.

Understandably, I was completely down in the mud for the first few months. I would lie in bed watching movies for hours because facing my reality was too heavy. After months of watching others live out their lives in those movies, I decided that I needed to stop avoiding the fight. I decided that, just as I had trained as an athlete, I now needed to train myself to live. I knew I had to focus on what I could control, lean into the discomfort and push through the obstacles to live life on purpose. Something I’ve come to call “living an intentional life.”

My decision to adopt an intentional mindset and train myself to live turned small steps into monumental milestones. The first thing I tasted after those initial months without any food at all was a red cherry Life Saver candy (ironic, right)? That was my small step. When I tried to make the leap to solid food, I admittedly pushed too far, too fast. Doctors told me that I could eat three bites of food, that was all. So, I bought myself a six-inch Subway sandwich, cut it into three pieces, and ate it in three bites! Regrettably, this wasn’t great for my digestive system at the time. But, it was a learning experience and it felt like progress to me.

To the disbelief of my doctors, and others around me, this shift in my mindset – my transition from victim to victor – translated to my physical health as I began to make steady progress. Nevertheless, I experienced challenges as I navigated how to best advocate for myself and balance my SBS management goals with my personal goals for living my best life.

It took a while to understand which types of care were best for me and the way I wanted to live my life. I am very thankful for my wife, who is a wonderful advocate, registered nurse and fighter. She is the one who was first able to step in and say, “No, this is not acceptable,” when working with my care team. It was hard at times to identify the right care solutions. For example, I initially had a Hickman (or central line), but the wires meant I couldn’t swim or shower. Both were too important to me to give up. Since I do not need to access my port for most of the day, I chose to have a high access port (chest level) that I can access each night instead of a central line that would interfere with my daily routine.

Adjusting to the new port was yet another obstacle, as I need to access it via needle. At first, I would get so nervous every night before that needle stick and I would just cry. But I am grateful I can trade that small amount of time each night for the ability to hold onto some important parts of my pre-SBS routine when I’m not hooked up throughout the day. For example, I remember how happy I was to take my first shower, something that I used to take for granted. I definitely used up all the hot water in our house that day!

These adjustments taught me to accept that I was not invincible and to instead focus on what I can control, taking small steps each day and forming habits to benefit me and my health. Though I have been on TPN every night since the accident, my TPN has evolved and is no longer my only source of nutrients. Now I take in ~30% of my nutrition from food and ~70% from TPN. I’ve also learned that sufficient levels of sodium and hydration are important, so now I salt everything and use lots of hydration tablets.

With my doctors’ support, I was able to start running again. In the beginning, I started with a few steps. Over time, I build up to just one mile each day. Then, I slowly built myself up to two miles, then three. Now, I have completed five half marathons! I continue to swim and play basketball, some of the things I worried I had lost forever because of my SBS diagnosis – I am so grateful they are still a part of my life.

I am also fortunate that my workplace includes a supportive team made up of healthy, go-getters who share similar mindsets to mine when it comes to living an intentional life. This work environment has encouraged me to meet my personal goals, including starting my own financial advising firm. Living with SBS can make the workday uncomfortable and unpredictable. But I establish boundaries and habits that set me up for success, such as the ability to avoid having meetings first thing in the morning or right after lunch when I might need to step away to manage gastrointestinal issues associated with my SBS. And my assistant is a great support in that area. Having those people in your life who have your back is everything.

Self-motivation is big for me, but connecting with others in the SBS community has been motivational in a different way. My wife and I went to advocacy group conferences early on, and I found it encouraging to hear from others with SBS. For example, a man who had been living for 55 years on TPN while continuing to thrive and take control of his journey inspired me to share my own story in hopes that others will see how it is possible to still live a great life with SBS.

I have experienced some very deep lows in my SBS journey, particularly in the beginning, but have learned to embrace the victories. I’ve even faced death, on one occasion in a very close call due to a staph infection near my port. It had brought my blood pressure down to 15/10 and forced the doctors to remove the port immediately. Yet, I’ve also seen the beauty of life – I have witnessed the first breaths of my children and so much more. I truly love life, and these experiences only further solidify my faith and perseverance.

This is a journey of ups and downs, but the downs don’t last. I believe we are not given more than any of us can handle, and I know that I can handle so much more than I ever thought I could. My faith, the blessings I have experienced in my life and the support of my care team, family and many others have brought me back to life. I would encourage anyone living with or caring for someone with SBS to be transparent about the challenges they may be facing and embrace them. Find opportunities within the obstacles and be intentional with your life.

To learn more about Short Bowel Syndrome (SBS), visit https://www.shortbowelsyndrome.com/. To join the community and talk with others who are living with SBS, check out https://www.facebook.com/TakedaSBS.

This article was created by Takeda.

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

 

Support is Crucial

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Written by: Brenda Elsagher, Director of Affiliated Support Group (ASG) Affairs, United Ostomy Association of America

Support. I’m not talking about my bra, although it could win an Oscar for a supporting role! I’m talking about the kind of encouragement you get from knowing another person with an ostomy.

I freaked out when I was 39 and had to have a colostomy. I wanted a point of reference and needed to talk to someone who had a stoma. I wanted to know what to expect; I wanted to prepare my body and mind for the changes coming my way. There was no internet and no social media. I didn’t even know there was any other kind of ostomy besides a colostomy.

My Wound, Ostomy, and Continence Nurse (WOCN) was a great source of comfort. She calmly explained, without horror, that excrement (OK, I think she actually said “stool” – and I wouldn’t have used either of those words) would be coming out of my abdomen and into a bag that would somehow adhere to my body.

She made it sound like it would become so natural, as if I was adding a quart of milk to my shopping list. No big deal. You’ll get this in no time at all. And she said all of this with a confident smile – a genuine one, not a fake one like when people are trying to help you through something awful. I felt she meant it! So, I let myself believe her.

During one of my subsequent visits to her office, I saw a newsletter that listed a meeting time for people living with ostomies. I went to the meeting, and realized that this was my tribe. For many attendees, these gatherings were the only ostomy support they had, other than their loved ones who tried to understand but could never quite get it. Besides, here were people I could eat a meal with while talking about changing ostomy pouches. You can’t do that with every crowd! I met life-long friends at those meetings, and that was an unexpected perk.

Then I heard of a conference, the United Ostomy Associations of America (UOAA) national conference, where people came from all over the USA, and some from Canada and other countries too. It featured classes, social events, great speakers, and time to get to know more people with ostomies. A young man I talked to recently told me that he met someone at the 2009 conference who changed his life and made all the difference. If we only knew the power of a quiet conversation and how its impact can be phenomenal. We can be a resource for one another. That’s why I suggest regular telephone check-ins or video calls with UOAA Affiliated Support Groups (ASGs), because both can play a crucial role in helping someone feel connected.

I also found information galore and updates on the latest innovative technology for people with ostomies in The Phoenix magazine (the official publication of the UOAA), which still exists today. Not long after, I got America Online (AOL) and felt like I was on the forefront of technology. I had a computer, and now the internet. Imagine horns blasting – my world opened up and the exchange of information worldwide was awesome. Even more ways to communicate! A woman in Colorado who read my book, “If the Battle is Over, Why am I Still In Uniform,” emailed me, decided to get a colonoscopy, and was spared from cancer. That is a satisfying feeling, to know you gave up a year of your life to write a book and it saved another.

I began to speak across the USA. Who would have thought that 25 years later I am still talking about bowels and butts, or dare I say the lack of them in some cases? The people I have met, the conversations I have had, the opportunities that have come my way – all because I chose to meet with a small group of people. That experience led to an abundance of support, not only for me but for others I know with ostomies or continent diversions, because of all that we shared. Some shared their misery, some shared their success, and some listened, learned, and began to feel that they could deal with their situations. Finding the group was life enhancing, and even life-saving in many cases. I kept coming to help others, but have been helped in return many times over. A phrase that I often heard at the meetings was, “Someone reached out to me in the hospital, and I want to do the same.”

In my new role as the UOAA Director of ASG Affairs, I have come full circle as a volunteer. I meet so many people across the USA that are actively reaching out to others, and helping them on their paths to recovery of mind, body, and spirit. I am their cheerleader. Sometimes I can offer a suggestion or teach them how to use Zoom to stay connected. I have always known that the UOAA had our backs but I have now found so many more resources on their website that I never knew existed. There are over 300 ostomy support groups in the USA for people with ostomies and continent diversions. And for people who don’t like to go to group meetings, there is an individual membership too that gives them full access to an abundance of resources.

There is no right way or wrong way to have an ostomy. You don’t have to shout it out to the world, but there also is no reason to be ashamed about it. I honor your privacy, and thank you for honoring my desire to be public. Both are good. We are alive and grateful!

 

This article originated in the Hollister Secure Start services eNewsletter. For more ostomy resources at your fingertips, subscribe here.

Brenda Elsagher is an author, international speaker, and comedian, and also volunteers with the UOAA. She has been living well with an ostomy for 25 years. Find out more about Brenda at www.livingandlaughing.com, and follow her on Facebook @BrendaElsagher. 

Financial Disclosure: Brenda Elsagher received compensation from Hollister Incorporated for her contribution to this article.

 

Editor’s note: This 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.

Kara O’Neil’s Story

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Discovering Strength in the Struggle from J-Pouch to a Permanent Ostomy

If you asked me 20 years ago when I was in college if I thought I could be a strong ostomate, I would have just stared at you in shock. Strength and I were not the best of friends. In fact, it was one of the things I often questioned about myself. I had no idea what was something worth crying about.

That all changed three years ago when I was put to the test when I went from sudden rectal bleeding as a result of ulcerative colitis, to having to remove my colon in a matter of four months. During the next three years, I had four more operations from trying the j-pouch and failing, to finally getting a permanent ostomy just this past December.

Somewhere along the way, I found my strength.  I dealt with major emotional and physical changes faster than I could even process.  I had to adapt to a whole new way of life and a whole new way of looking at myself.

Somewhere along the way, I found my strength.

These three years have been incredibly hard. They have tested me in every way, broken me down to smithereens of myself, and caused me to question everything. The true strength that just suddenly overcomes you when you least expect it is something you don’t really understand until you are there and have no other choice. Life after that is forever changed.

Along the way, I started to feel strong. I was amazed by what both my body and my mind could accept and turn into a positive. I started to really take care of my physical health, and in the three years that I have been the sickest in my life, I became the most physically strong I have ever been by participating religiously in barre class. This physical strength, along with the help of the ostomy community, is what helped me to then discover my mental strength.

I literally stared death in the eye and won.  It is hard to even write that today.

Feeling very alone, I stumbled across some ostomy bloggers one night while scouring the internet.  Reading their patient stories blew my mind at the time, because I didn’t comprehend how they could just accept living with an ostomy.  But all that changed and I began to understand when I was so sick that it was no longer a choice if I wanted to keep being a mommy.  The decision to have a permanent ileostomy was the best choice I ever made.

This physical strength, along with the help of the ostomy community, is what helped me to then discover my mental strength.

I just had what I hope to be my final surgery and got my permanent ostomy on December 1, 2020. Since then, I have made some promises to myself. I want to be my absolute best version of myself now that I am able to really live again.  I want to help as many people with IBD and facing the possibility of an ostomy as I can.  I want them to see what I have come to see, that they too can use such an incredibly difficult period in their life to find their strength and their best version of themselves.

“God said to me, I am going to show you pain.  And then you are going to help other people who are in pain because you understand it” (Lady Gaga).

 

When an Ostomy Reversal Plan Takes A U-Turn

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By Ellyn Mantell

Setting the scene for you, imagine the patient who has controlled ulcerative colitis or Crohn’s Disease, or diverticulitis and is suddenly terribly symptomatic with infection and unremitting agonizing pain. Or consider the patient who has an accident in the intestinal region of their body. Or the patient who hears the news following a colonoscopy that there is colorectal cancer. Or the patient, like me, whose motility issues have made it impossible for the bowel to function. All of these scenarios are happening every day, all day, in hospitals and households and they all may very well lead to either a colostomy or ileostomy. (I believe a urostomy is always a permanent surgery)

Frequently, depending upon the physicality of the ostomy, a reversal in a matter of six months to a year is either discussed or promised to the patient. It is usually explained that for the connection to heal, it requires that time, and once healed, the reversal is smooth sailing. Except, in many cases, it is not, and that is what I want to bring to your attention, based on the people with whom I have spoken. Please remember, I am not a medical professional, but I interface closely with many patients in many situations, so I speak from my observations.

Sometimes, during those 6-12 months, the sphincter muscles of the rectum stop fully functioning, and the patient may be tied to the bathroom as never before. Or the connection is narrow and there may begin a pattern of bowel obstructions due to the backup of stool. Other times, the surgeon had good intentions for a reversal, but the patient is simply not a good candidate due to illness or stepping out of remission of some disease process.

The reason I am writing this graphic and perhaps uncomfortable blog for many to read is that an ostomy can happen to anyone for a variety of reasons. UOAA estimates there are 725,000 to one million of us in the United States who have ostomy or continent diversion surgery. I want to educate all ostomates that making peace with their new anatomy may be safer and provide a more predictable future than hopes for a reversal. I believe and have heard from others who give ostomy support that those who know they will be an ostomate for the rest of their life tend to be more open to embracing their new body, physically and emotionally. Those who have been given (false, in some cases) hope for a reversal are frequently disappointed and angry, feel betrayed and lose faith they will ever be “normal” again.

Support Groups are a wonderful way to begin to think of the new normal. It is so beneficial to meet like people, learn about appliances, clothing, foods, sleep, intimacy, maintaining health and to simply share experiences. If you cannot find one in your area, contact the United Ostomy Association of America or your local hospital. Take a family member, caregiver or friend if it gives you comfort. I guarantee you will feel empowered by taking this step, whether you are having a reversal in your future, or are embracing your ostomy for life.

Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. You can follow her personal blog at morethanmyostomy

 

 

 

LeeAnne Hayden’s Story

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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.

Singer’s Ostomy Past Leads Him to Partner with UOAA

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

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

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

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

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

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

Ostomy Outreach

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

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

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

A Famous Musical Family

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

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

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

Fighting Stigmas

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

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

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

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

Connect with Damon Little:

Facebook @IamDamonLittle

Twitter: @IamDamonLittle

Instagram: @IamDamonLittle

Youtube: Damon Little Music

Understanding the Emotional Impact of Ostomy Surgery

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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.

 

Crucial Role of Emotional Support – Infographic

Emotional Support Infographic

 

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:

 

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

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By Tricia Hottenstein

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

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

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

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

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

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

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

I just need a moment.

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