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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.

Colorectal cancer survivor Allison shares her ostomy story. “No one truly understands what you are going through physically and psychologically more than those who have been there themselves.” Check out her mythbusting videos and more.

Embracing Ostomy Advocacy and Giving Back

 

By Angie Davenport

I’ve had my ileostomy for 38 years due to ulcerative colitis but I only recently went public to encourage other ostomates.  Over the years I’ve helped many individuals by word of mouth while keeping my ileostomy private to the outside world. I have always wanted to be a blessing on a wider scope though to others with ostomies.

I was first diagnosed with ulcerative colitis in 1980 when I was three months pregnant.  At first, I thought it was pregnancy symptoms.  After a major episode, I was treated with medication for ulcerative colitis.  My son, James was born a few weeks early due to complications.

After the birth of my son in March of 1981, everything was under control and I eventually relocated from Warren, Ohio to Atlanta, Georgia.  While living in Atlanta I had a major setback with ulcerative colitis and I had to fly back to Ohio immediately and went directly to the hospital.

After several weeks of treatments in the hospital, my doctor came into my hospital room one night and said we have to do surgery or you won’t make it 24 hours.  I’ll never forget my mom crying and praying for God to give her my disease so I could have a normal life.

When I received my permanent ileostomy in March of 1982 I was a young 23-year-old single mom.  It was the day before my son’s first birthday.  I had never heard of an ostomy.  When I woke up in ICU I was devastated, ashamed and frightened.  I thought my life was over.

Once I became strong enough physically and mentally I moved back to Atlanta.  I was still feeling ashamed and frustrated until my physician in Georgia recommended I attend the local United Ostomy Association (the precursor to UOAA) support group.

While living in Atlanta I became very involved with the UOA group and completed the visitor training program.  I enjoyed visiting new ostomates at the hospital. I felt the freedom to be involved because no one really knew me in Atlanta. I remained active until I relocated back to Ohio in 1985.  That same year I married my high school sweetheart and we will celebrate 36 years of marriage in November.

Although I was very private about my ostomy I was very successful in my career. I became the first African American female officer at our local bank and functioned in several positions without the exposure of my ileostomy.  After the downsizing of my employer, I later worked 10 years at Great Lake Cheese until retiring in 2016.

What is my purpose in life?  How can I make my mom proud?

I’ve enjoyed my life as an ostomate.  I love traveling, cruising and shopping.  I was known in the business community as a person that loved to dress. I taught Dress for Success at the bank for all new tellers.

The past few years were filled with so much grief, with the most current being the death of my mom on July 4th 2019, only three days after my 60th birthday.  I was feeling the deep void of losing a brother and both parents within 4 years, depression was setting in.  I had support but I felt helpless and lost.  What is my purpose in life?  How can I make my mom proud?

Most will remember 2020 as a horrific year with so much sickness, death and devastation from a deadly pandemic.  For me, I utilized the time to seriously seek God for a purpose in my life and being quarantined turned out to be a blessing in helping me find my purpose.

I knew my testimony would bring awareness and hope to so many people.

I became more involved via social media with other ostomates.  I’ve met some wonderful friends and it became rewarding to encourage others that had shared similar experiences as me.  My heart was really saddened when I read an article about a young man that had gone to court for the right to die because he didn’t want to live with an ostomy.  I wept.  Also seeing how some individuals can’t afford the basic ostomy supplies and had to use grocery store bags and tape to secure their ostomy bags was heartbreaking.  I knew then, that there was so much more I could do for the ostomy community.  I knew my testimony would bring awareness and hope to so many people.

As a member of Jearlean Taylor’s Ostomy Stylzz Facebook Group I participated in a virtual fashion show.  She is a personal inspiration to me and that show boosted my confidence to a much greater level.  I felt a relief to go public.  I chose August 14th, 2020 to go live on Facebook and share my story.  I felt such freedom once I finished.  There were family members, coworkers, church and community friends that responded and supported me in disbelief.  For the past 38 years, they never knew I had an ostomy.

One family friend messaged me and told me that he was scheduled for surgery but has canceled many times, but because of my video he felt he could now go through it.  I still check on him to make sure he’s not having any problems.  That made going public all worth it.  But what else could I do?

I decided to participate in the Run for Resilience Ostomy 5K.  I registered over 20 walkers to participate virtually in several cities and I exceeded my fundraising goal by almost 100%.  The highlight of the day was my local mayor stopping by to present me with a proclamation from the City of Warren in support of ostomy awareness. Our local newspaper also highlighted the event.

…because of my video he felt he could now go through it.

After posting my Ostomy Awareness Day photos and story on Facebook I was contacted by so many family and friends willing to support me in the future.

With the pandemic still active, I’ve been limited in getting out in the public but I do try to make an effort to encourage other ostomates daily.  I’ve connected with my local Affiliated Support Group leader and I’m looking forward to greater things once we can meet publicly.

On, March 6, 2021 I will be a 39-year ostomate.

I’m on Facebook and I have a Youtube video discussing my ostomy journey.

I’m free, living with my ostomy!

 

By Ellyn Mantell

It continues…the pandemic is rearing its ugly head and seems to be gaining strength once again, despite never universally weakening. Whereas we assumed by this time in the fall, we would be back to some sense of normalcy, we are, instead, buying jackets, shawls, gloves, and hats so we can eat outdoors and continue to safely socialize. Travel requires an army intelligence level approach including Ultra Violet wands, visors over masks, dozens of wipes, and gallons of hand sanitizer. Seeing family feels like a tease, since hugging and kissing are off-limits, with no change in sight. I could go on, but you know all of this, and more.

The one good thing that keeps me upbeat is the wonderful feeling of connecting with our support groups via Zoom. Ostomates still have concerns and needs, surgeries continue to happen, and new members need a safe place to begin their journey to their new normal. Even those of us who are comfortable and knowledgeable still need the same safe place to discuss concerns that continue to develop. And the ability to see familiar faces goes miles in feeling comfort.

I know from others who are doing virtual support group meetings that they, too, are feeling so much more secure in the roads they are traveling. Whether it is AA, or NA for addiction, or Alzheimer’s support for spouses or caregivers, cancer survivors, etc., people need to be able to talk and gain strength. Perhaps the ability to remain anonymous may be even more positive than in-person meetings.

Zoom and virtual meetings have been a lifesaver, and had we not been in this demanding situation, we may never have discovered that. I can still remember being asked to participate in a Zoom meeting a few years ago, and running as quickly as possible away from the involvement. It seemed so overwhelming and daunting. But necessity is truly the mother of invention, and I am eternally grateful that Zoom has made itself available for the masses.

Please consider reaching out to an ostomy support group via a computer or smartphone, if you are in need of…support. There is, undoubtedly, a group to help with almost every issue you may have. I believe I speak for those who facilitate when I say we care about you, want to help you, are likely to share your concerns and feelings, and most of all, are committed to you. I know that each ostomate who walks into my life represents an opportunity to help them look at their new life in a positive way, and with that in mind, our value is rather invaluable!

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

By Ellyn Mantell

From the time I can remember, constipation was always an issue for me. I assumed I was doing something wrong to cause it. It turns out that I was born, like so many, with a redundant foot of bowel, which in layman’s terms, means that my colon was not only oversized, but a portion of it went in the wrong direction. Here is what I mean…the colon or large intestine ascends on the right side (ascending colon) and goes across the abdomen (the transverse colon) and descends the left side (the descending colon.) That is exactly the path that stool takes in its journey to leave the body. My redundant foot of bowel meant that the transverse colon actually went up at the connection to the descending colon, for a foot, before heading downward, so stool had to travel against gravity before leaving my body.

My first barium enema was when I was 10 years-old, and although we didn’t know what the problem was, I was always told at that time, and every subsequent test, that my sluggish bowel would be an issue for me, (and it truly was, until my ileostomy 6 years ago). So, it came as no surprise that I was also told, each colonoscopy or c-t scan, that I had severe diverticulosis, which could become diverticulitis, a problem that often requires medical intervention.

The diverticula are small sacs that form along the mucosal lining of the colon, often due to straining to move stool through the intestinal tract, which puts pressure on the intestinal wall (which causes the bulging). This issue can worsen with age, medications and other causes of constipation. If the diverticula are inflamed or rupture, serious infection can result, which then is called diverticulitis.

While diverticulosis doesn’t cause discomfort, diverticulitis can be terribly painful, cause fever, constipation or diarrhea, nausea and fatigue. Several in our Ostomy Support Group have had resections of their colon and ostomies due to diverticulitis. Some choose to be reversed after the several weeks of healing necessary to allow the connection in the intestine to do its job. Others choose, instead, to live with their ostomy, which offers them freedom from constipation.

There are ways to avoid diverticulitis, and they are manageable for most. Eating a high-fiber diet rich with fruits and vegetables and whole grains is a great place to start. You may remember that I have also mentioned that is a smart way to enhance our immune system, which may help fight Covid-19. Add more fluids, and if possible, pitted watermelon, for an extra kick of fluid. These tips will soften waste and help it pass more quickly through your colon. That may reduce the risk of diverticula becoming inflamed. Also, exercise and maintaining a healthy weight are very helpful.

Many physicians recommend reducing red meat; some used to say avoid nuts and seeds, although that restriction seems to have changed. As I tell others with an ostomy especially those with an ileostomy, if you eat nuts and seeds and fresh fruits and vegetables, which are healthy and filling, please chew, chew, chew, since that is the best way to avoid inflammation or a blockage.

Many medications can impact motility of the bowels, so be mindful to changes when you add or delete medications, and please address with your physician any concerns. And most important, if you notice any changes, pain, distention, nausea, vomiting or generalized discomfort in your abdomen that has you concerned, do not wait. Speak with your physician and consult UOAA’s blockage card and don’t be hesitant to go to the Emergency Room if needed. Much can be done to not only make you feel better, but to prevent a manageable situation from becoming extremely serious!

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

By Ed Pfueller, UOAA

Amazing things can happen when ostomy patient advocates and clinicians come together.

Dr. Neilanjan Nandi, MD an IBD specialist at Hahnemann University Hospital in Philadelphia, trained in cities across the country and has long observed that “physicians were not comfortable with stoma care and troubleshooting as we should be.” “I learned early on the importance of knowing as much as possible by working with my patients.”

He decided to organize the hospital’s first “Hands On Ostomy Workshop” to empower his medical students, residents, and gastroenterology fellows with formal education.

To help bridge this gap with patients Hahnemann Outpatient WOC nurse Josephine Catanarzo suggested connecting the program with leaders of the Philadelphia’s UOAA Affiliated Support Group.

Stanley Cooper and the Philadelphia Ostomy Association, that is celebrating 70 years of service, and have a long history of talking to nursing students. They viewed this as another opportunity to bridge the gap between patients and those who serve them.

“The surgical staff and fellows got to hear directly from our engaging and dynamic patient panel about their experiences medically and personally with a stoma. This was the MOST profound aspect of the entire workshop. You can learn the medical and surgical nuances in textbooks. BUT you cannot understand the psychosocial impact unless you hear it directly and eloquently from our patients. Thank you to United Ostomy Associations of America patient advocates Sheldon, Stanley and the wonderful Stacey for taking he time to enlighten us!” Dr. Nandi says.

“We absolutely loved attending this,” Stanley says.  “For the Philadelphia Ostomy Association and UOAA it made Hahnemann aware that locally we have been in the Philadelphia area since 1949.  That we have a visiting service and that all our visitors are trained at a visitor’s training class that was developed by UOAA.  We had a lot of discussion on how today’s short hospital stays affect visits and a lot of times we can meet patients at their homes or at a restaurant for visits and that all helps in the patient’s rehabilitation.”

“Stanley was absolutely and overwhelmingly supportive of this initiative and brought in valuable educational resources courtesy of the UOAA for our surgical house staff. He was also able to provide us educational brochures to distribute to our patients as well,” Dr. Nandi says.

If you, your support group, or hospital is interested in some of UOAA’s educational guides you can view them here on ostomy.org or request printed materials, such as our New Ostomy Patient Guide. Our various Ostomy Patient Bill of Rights including practices for nurses to support their patients also help to educate and bridge the divides between patients and caregivers.

In addition to WOC nurses Josephine Catanarzo and Judi DiPerri  Hahnemann’s Colorectal surgeon David Stein was also invited to be a part of the workshop. Dr. Stein discussed what is involved in stoma site mapping and planning. The nurses shared clinical pearls on troubleshooting and application of ostomies.

“This was  truly was an amazing program!” Dr. Nandi says. “We learned about their individual stories and experiences with an ostomy and how they have continued to be true patient advocates within our greater community.”

One of Dr. Nandi’s patients Stacey Cavanaugh also provided her unique patient experience to the group.

“At our next event we are taking a suggestion from Anastasia, or Stacey, as she is affectionately known, and planning to have our docs wear an ostomy appliance for a day filled with fluid and to write about their experience and share it with the group. I think it will be more than novel and truly insightful for our young, and old! learners to gather. I also hope to invite other fellowship programs to attend our next ostomy workshop too.”

It’s inspiring what a few committed medical professionals and ostomy patients can do when they come together. Consider reaching out and bridging the gap where you live or work.

 

You can hear Dr. Nandi speak at this summer’s UOAA National Conference or connect with him on social media @fitwitmd  

To get involved with your local support group click here or follow our advocacy initiatives for other ways to make an impact.

Our Ostomy Gives Us Power!

Ostomy Visitor talks clothing and embracing life

By Ellyn Mantell

As president of our Ostomy Support Group in Summit, New Jersey, I have met many future ostomates over the years since I have had mine, and we have met in various places, depending upon their health, etc. The one that stands out in my mind is a meeting at a shopping mall a few weeks prior to her ostomy, with Carol, a woman who wanted not only to see the stoma for herself but to understand how it would fit into her life. She loves clothes, as do I, and was frightened she would need not only to purchase a new wardrobe but to change her style of dress.

The best way to show my stoma to her was to go into a fitting room in a store. We brought in some clothes that were of interest to her, and I proceeded to try them on, demonstrating how my stoma (Lily, as I have named her) would fit neatly and snugly under the clothing. I was reminded that as soon as I had my ostomy four years ago, I gave away all of my belts and fitted pants. I was certain I would never wear them again, despite being told that wasn’t true. To the contrary, I saw pictures of great looking women with ostomies online in tight jeans with belted waists. It was just too hard to imagine myself wearing belts and jeans with a pouch, and since these women were not in front of me, I couldn’t ask them “how do they manipulate their appliance to be comfortable and secure?”

Knowing it would have been invaluable to me to actually see an abdomen in clothing, I wanted Carol to have the proper introduction to dealing with her wardrobe. We laughed as I told her of my quest to replace my jeans and belts over the years – since I have learned I can wear almost anything! In truth, my “go-to” outfit is most frequently leggings and tunics, dresses and full-legged pants with a tank, covered by cropped tops. I am what is known as “funky and fashion-forward dressing,” as I learned when I was the fashion trainer for Macy’s years ago, and happily, my style hasn’t had to change due to Lily, who requires a high-output pouch that is so long, and I am so short, that it rests on my thigh!

Wide-eyed, but a little more able to envision her own “Lily,” Carol and I left and grabbed some tea at the nearest Starbucks. We sat and talked about the changes she anticipated and feared, and then she asked me what I really, very truthfully, feel about being an ostomate? Without missing a beat, I very simply said POWERFUL! I told her that as I look around at the many people shopping, I know I have a secret, and that secret is that I am strong, a survivor, and I can help others. Knowing that gives me the most positive feeling, and I am grateful, and want to share it!

I have checked on and even visited Carol as she recovered from her surgeries – since there were a few. Sadly, there is no straight line for any of us, and depending upon the reason for the ostomy, recovery can have many twists and turns. My own led me to need to spend weeks in the hospital and then a rehab facility. But she is improving daily and gaining back her strength and determination. I know she will join our support group or another closer to her home. I also know that before too long, she, too, will be accomplishing her goal of like me, being trained to become an Ostomy Visitor…to meet with and help others learn how to cope with their ostomy, and how POWERFUL they truly are, as well!