Resilience Story: Barbara Tischler

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From the ICU to the long road back to health and giving back to the ostomy community.

In the afternoon of July 17, 2016, I had just returned home from an ice cream social (and I had eaten ice cream at a party the night before, as well. More on that later). I felt tired, so I laid down for a nap. Almost immediately, I began to feel abdominal pain. I went to the bathroom to see if I could alleviate matters by sitting on the toilet. For about a month, I had been having some constipation, but it had not raised any major red flags for me. And I had just turned 46 — too early for a colonoscopy at that time. When sitting on the toilet didn’t help and the pain got worse, I called for my husband. By the time he came upstairs, I was lying on the bathroom floor in tremendous pain. My stomach had become extremely distended, and I had removed a lot of my clothing because it was binding me. My husband called 911. The paramedics put me on a stretcher and carried me down the stairs and into the ambulance.

I remember the ride to the hospital, and I have a few sketchy memories of being in a hospital room, trying to hold in an enema, but failing to do so because of the pain. At that point, the doctor in the ER thought I just had severe constipation.

The next thing I remember is waking up in the ICU almost a week later in a heavily sedated fog and with a ventilator tube stuck down my throat. At some point later, the ventilator tube was removed (a day after a failed attempt to do so). My husband had to explain to me that a CT scan did not show anything wrong, but I was admitted to the hospital due to my pain. When my blood pressure dropped precipitously on July 19, the on-call surgeon was pulled in. He looked at the CT scan and saw evidence of air, which is a sign of a perforation. I was rushed into emergency surgery, where the surgeon found a cancerous tumor in my colon that had caused my stool to be impacted, which in turn, had triggered a massive perforation of my large intestine. I was in septic shock and close to death. The surgeon removed the tumor, resected my colon, and gave me a colostomy. I owe my life to that surgeon.

I found the right pouching system by making a multitude of phone calls and not giving up or settling until l found the right solution for me.

Initially, the plan was that in two to three months, I would have the colostomy reversed. Then, that changed to include six months of chemotherapy to eradicate any microscopic cancer cells floating around in my abdomen, due to the contents of my colon having been dumped into my abdomen. After that, I would get my colon reconnected.

However, that was not to be. I was starting to recover a bit in a regular hospital room. But due to the perforation, I had developed multiple abscesses of infected fluid in my abdomen. I started with a drainage tube, but eventually, my surgeon discovered that there were many abscesses unreachable by drainage tubes. So, on August 5, I went into surgery to drain all the areas of infected fluid. Unfortunately, I ended up back in the ICU on a ventilator. And I was told that because the infection had damaged organs, my spleen, 60% of my small intestine, and the entirety of my colon were removed. I now had a permanent ileostomy. And despite the second surgery, I eventually ended up needing three drainage tubes for three new abscesses that formed.


Halloween 2018 – my group fitness exercise class, where I showed my ostomy pride and spread awareness by wearing an ostomy pouch on the outside of my clothes, with a stoma sticker in the center.

I was quite sick and ended up staying in the hospital a total of 52 days, followed by two weeks at a rehab facility. During all this time, my husband was amazing. He kept friends and family up to date with nearly daily emails, on top of working full time, taking care of our 12 and 15-year-old sons, and visiting me in the hospital almost every day. My mother-in-law, friends, and people from my synagogue helped out with meals for my husband and sons. I received so many flowers that my hospital window sill looked like a florist shop. I also had an incredible number of phone calls and visits from friends and family. My parents came from Arizona and my brother came from California at one point while I was in the hospital, and a sister-in-law came from Texas while I was in rehab.

Once I got home, I had a PICC line through which I had to give myself antibiotics (continuing on with the antibiotics I received the entire time I was in the hospital and rehab). I bottomed out at 70 pounds and had little energy. I was also experiencing frequent ostomy leaks and still had one last drainage tube that had to stay until the abcess fully drained (which didn’t happen until November) and a fistula that had formed closed up (which didn’t happen until April 2017). I became very depressed and started to think about ways I might end it all. When I started verbalizing these suicidal thoughts, my husband told a home healthcare nurse, who urged him to take me to the hospital. I did not want to go, but when my 12-year-old son said that he did not want to NOT have a mommy, I agreed to go. Even though my stay in behavioral health did nothing to solve my ostomy leaks or my weight loss, I came home with my head screwed on a little more tightly.

There is nothing like being in a room with other people who know exactly what you are going through.

The next several months were a whirlwind of doctor appointments and drainage tube checks at interventional radiology. A caretaker helped me during the day and got me to my medical appointments while my husband was at work. Throughout the fall, I continued struggling with ostomy leaks, often happening in the middle of the night. My husband helped clean up my messes and helped me with my pouch changes. I had three public leaks, which were mortifying.  I also started to notice numbness in my feet. I figured out it was neuropathy caused by my long-term antibiotic use. As soon as the last abscess was completely drained, I called my infectious disease doctor and asked if I could finally stop the taking the antibiotics. Thankfully, he said yes. While the neuropathy didn’t spread any further after that, I unfortunately ended up with permanent numbness in my feet. I have a fuzzy feeling in them to this day, although I don’t think about it most of the time.

Eventually, I got two months of at-home TPN to help with my weight. I had become malnourished because my body was not absorbing nutrients. With the TPN, one thousand calories a night went into my body intravenously, bypassing my apparently faulty digestive system. This helped tremendously to boost my weight. And while it took me time to feel comfortable with the idea of eating ice cream again (given that my harrowing experience started after eating ice cream), eventually I did!

Barbara with fellow ostomate and Illinois Ostomy 5k co-director Bret Cromer.

After becoming fed up with ostomy leaks, I called all the ostomy pouch manufacturers and tried tons of samples. I kept getting my hopes up that each new pouching system would work, and then it would fail. However, I eventually found a winner with a custom pouch from Nu-Hope. It gave me my life back. I was able to go back to working with my organizing clients in their homes without worrying about leaks.

My father found out about the Ostomy Support Group of DuPage County and contacted its leader, Bret Cromer. A friend introduced me to a fellow synagogue congregant and member of this UOAA affiliated support group. She encouraged me to start attending meetings. In January 2017, I finally felt well enough to go to my first meeting, and I have been an active member ever since. There is nothing like being in a room with other people who know exactly what you are going through. I have made great friends and learned about helpful products that I have incorporated into my ostomy care routine. Fellow members helped me when I first joined, so now I try to pay it forward by helping new members.

I was a long-distance runner from age seven through eighteen. After years of suffering from shin splints every time I tried to run, I finally figured out in 2012 how to plant my foot when running to relieve stress on my shins. After my intestinal surgeries, I gradually got back to taking the group fitness exercise classes I had taken pre-illness, but every time I tried to run, it felt like I had cement blocks on my feet. Eventually, though, I started to get a bit more spring in my step. I tried running again one day, and while initially I had the cement-block feeling, I kept going and it got easier. I was thrilled to be able to run again!

In 2018, I saw the UOAA webpage of Run for Resilience Ostomy 5k runs throughout the country for Ostomy Awareness Day. That motivated me to organize my support group’s first informal Run for Resilience 5k. I organized these informal virtual ostomy 5ks every year through 2023. I also became the treasurer for my support group in 2023, and in 2024, Bret Cromer and I co-organized our first official UOAA run, located in Downers Grove, Illinois!

My husband and older son have been very involved with the support group. They attend social/holiday gatherings of the group with me, and they have helped at the 5k events. As for me, being an active member in the support group and organizing the 5k events make me feel pride in having an ostomy. I still have private pity parties occasionally, but overall, I feel that I am an emotionally strong and resilient ostomate.

October 5, 2024 – my older son, me, and my husband at the Run for Resilience Ostomy 5k in Downers Grove, Illinois.

My parents have a charitable fund through the Arizona Community Foundation. They have generously donated to my support group and to the UOAA through this fund. I am so grateful for their support. In 2019, I was greatly honored to be inducted into my high school Athletic Hall of Fame. At the ceremony, my father introduced me, and I shared my cancer and ostomy story in my acceptance speech.

I never received chemotherapy. By the time I was healthy enough for it, my oncologist said it would not be very effective. Instead, he watched me very closely with frequent CT scans and bloodwork. Every time anything looked suspicious, I had follow-up tests and biopsies that thankfully showed benign masses, some of which resolved on their own. Finally, in June 2023, after having several clean scans, my oncologist told me about a new option called a circulating tumor DNA test. I jumped at the opportunity. A lab took my original tumor and determined its DNA. Then, the lab looked for that DNA in my current blood plasma, and there was no evidence of it! My oncologist released me from cancer surveillance. Getting the good test result and saying goodbye to my oncologist were very emotional moments for me.

Being an active member in the support group and organizing the 5k events make me feel pride in having an ostomy.

Among many things throughout my journey, I have learned the power of self-advocacy. Here are a few examples. I found the right pouching system by making a multitude of phone calls and not giving up or settling until l found the right solution for me. Through online research, I discovered a much more palatable oral contrast for my CT scans than barium sulfate, called water-soluble iodinated oral contrast. It turned out that my cancer center knew about this option, but did not offer it to me until I asked if they had it. And I had to make multiple requests to speak to my GI doctor to request blood work to prove to my GI doctor that I did not have Celiac disease, after he claimed I did when an endoscopy showed flattened villi in my small intestine.

I have had several hiccups along the way involving hospitalizations related to my ostomy (severe dehydration and diarrhea, small intestinal bacterial overgrowth, and blockages) and tendinitis injuries that make it difficult for me to run, but somehow, I always manage to bounce back.

Thank you to Barbara for sharing this inspiring story and giving back. To learn more or sign-up for a Run for Resilience Ostomy 5k near you or virtually visit ostomy.org/5k. To celebrate the resilience of Barbara and her ostomy community donate to the Downers Grove, IL Run for Resilience Ostomy 5k.

Fears, Faux Pas and Fulfillment

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My Ostomy Story

Hello! My name is Marcia Benedict. I have a urostomy due to bladder cancer.

Facing an ostomy and what life would be after surgery can be overwhelming and I found myself repeating, “I never expected this”.  I was dumbfounded, speechless; and at first, all I could do was cry. I hope my story will give you the strength, support, and desire to thrive beyond expectations.

My Journey

After retiring to Tucson, AZ in 2019, I remembered hearing, “if you ever find yourself in need of medical attention and don’t know who or where to turn, search for the nearest teaching hospital”. I sought medical attention at Banner University Medical Center. The support from doctors and their care team, my Ostomy nurse (CWOCN) and our local Ostomy Support Group has been invaluable.

Despite the initial fear and challenges, I adapted to my new normal by being my own best advocate. I needed to speak up, be determined and resilient.Through it all: Urogram, cystoscopy, cytology, TURBT (transurethral resection of bladder tumor).  Diagnosis: T2/T3 tumor of the bladder invading the vaginal wall. Treatment: chemotherapy, radical cystectomy and hysterectomy. Recovery: one day at a time. Time for emotional and physical healing, following doctors’ orders, being kind and patient with myself. I survived each step, repeating each as needed along the way, and so can you!

Be Prepared – a Few Hints and Hacks

As I was living alone and my cat was not proficient in nursing duties, I requested skilled nursing rehab (SKF) upon hospital discharge. Though my surgeon recommended recovery with home health, he understood my dilemma and helped make those arrangements through his nurse navigator and case manager, followed by home health services (visiting nurse, PT/OT, nutritionist) when I returned home.

Support was such a lifeline in helping me better understand and cope,

Before surgery, I ensured I had a waterproof mattress pad, chux (puppy pads) for my bed and bathroom. Upon discharge from SKF and home health therapy, I preordered my ostomy supplies with the help of my WOC nurse. Over time, I became efficient in changing my pouching system, reducing the time from over an hour to now 15 minutes. Practice makes perfect (most of the time). Despite initial challenges, I adapted with determination. I set alarms on my phone to remind me to empty my pouch and avert potential leaks. Just in case, I always carry a puppy pad under the front seat of my car. To this day, I have repeat calendar schedules to change my pouch. Once, driving on the Interstate, I improvised with an empty water bottle as a makeshift urinal when restrooms were closed during the pandemic. I also keep an empty disposable water bottle (with the cap) in my car and a complete pouch change packet in my purse or backpack. These experiences taught me valuable lessons and have helped me manage with confidence.

You Are Not Alone

Two days before my surgery at the suggestion of my WOC nurse, I went to an Ostomy Support Group, a local affiliate of UOAA. To my surprise, I walked into a roomfull of ostomates of all types. They were welcoming. In a roundtable setting, they talked about the facts, the foibles and the freedom of living with an ostomy. They gave me strength to face what was coming and faith that there was life after ostomy surgery.

That first meeting led me to fulfill one of my retirement goals: …to give back by helping  others facing similar journeys. Recovering during the pandemic, in-person meetings were cancelled. Support was such a lifeline in helping me better understand and cope, I signed up as a phone contact. The Local Group initiated monthly Zoom meetings; and when restrictions were lifted, in-person monthly meetings reconvened.

I’m excited to be attending for the first time this year’s UOAA National Conference in Orlando. I’ve heard from previous attendees the information is educational, inspiring and a good time is had by all. I look forward to meeting some of the wonderful UOAA personnel who have helped me along my journey. Enough can’t be said about their resources: tips, educational publications, particularly the “Living with a Urostomy” guide online, supportive Ostomy Academy discussions and video sessions. If you haven’t tapped into the website www.ostomy.org or the UOAA Facebook page, I encourage you to check it out.

The Future

Initially, everything was daunting, but my expectations for retirement and recovery have exceeded my dreams. I’m healthy, happy and fearless.

Despite the initial fear and challenges, I adapted to my new normal by being my own best advocate.

Surrounded by family and friends, I’m active. I play golf, swim, and dance again. I travel by car, plane, and train in the U.S and internationally. Supplies and all, I braved a 26-day cruise. I even rode a camel!

Wherever I go, my “Bathroom Access Card” is in my wallet, and translated in 2 foreign languages on my phone. In recovery, I found the time and strength to redesign and renovate my kitchen. Made time to socialize. I recently attended my oldest granddaughter’s college graduation and all the festivities. I’m looking forward to it all over again with my second granddaughter who is studying medicine. Since my surgery, I feel blessed indeed, going on 6 years NED (no evidence of disease).

And I’m no longer single! I have a wonderful relationship with a man who adores me for who I am, including my ostomy. There is little to keep me from a fulfilling life, and you shouldn’t let a pouch stop you either.

You’ve Got This!

Celebrating UOAA Volunteers

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By Christine Ryan, UOAA Executive Director

In honor of the recent National Volunteer Week, UOAA would like to pause for a moment to recognize the extraordinary volunteers who help us achieve our mission. You’re simply the best!

Did you know in 2024 that 360 volunteers gave over 6900 hours to support the many projects and efforts UOAA worked on? This included 11 individuals who served as volunteer leaders on our 2024 Board of Directors. And we cannot say enough about the passionate volunteers who are working tirelessly on our 2025 Conference Planning Committee. Additionally, all of the members serving on our Medical Advisory Board and Patient Advisory Board are also dedicated volunteer leaders.

We also have 2,000 volunteer advocates in our Advocacy Network ready to answer our call to take action on the causes important to our community!

Left: UOAA National Leadership Volunteers at a National Conference. Right: UOAA Advocacy Volunteers in Washington D.C. with the Digestive Disease National Coalition (DDNC).

UOAA is proud of the passionate volunteers on our Advocacy, Education and Children to Young Adult Webpages Development Committees, all working behind the scenes advocating and creating educational resources to ensure UOAA is the trusted go-to place for ostomy and continent diversion information. Some of these volunteers have been serving for almost a decade! Then of course, we have many volunteers working on ad hoc special projects from designing courses to storytelling on Capitol Hill and in our blogs!  

Without all of these dedicated individuals sharing their time and talents with our small non-profit organization we would not be making a priceless impact or be where we are today! 

During this special time, UOAA would also like to formally announce its 2024 Distinguished Volunteer of the Year is Laurie Corona, MSN, RN, CWON. Laurie, a retired Certified Ostomy Nurse, has been on UOAA’s Education Committee since March of 2021, and became a Co-Chair of the Committee in May of 2022. She has been instrumental in creating the new versions of the Living with an Ileostomy Guide, Living with a Colostomy Guide, Living with a Urostomy Guide, Living with a J-Pouch, and Living with a Nephrostomy Guide, all of which are now available on UOAA’s website. She also worked with other members of the Committee and Board Members on the 2024 version of the New Ostomy Patient Guide. 

Laurie has worked tirelessly on ensuring UOAA has the most current, relevant and up-to-date educational resources to share with the ostomy community. Needless to say, over the past 4 years Laurie has dedicated countless volunteer hours to UOAA and is very passionate about helping the ostomy community through education and information. Laurie is stepping off of the Education Committee in May, 2025 and she is wished all the best in her future endeavors.

Feeling inspired to make a difference in the lives of the ostomy and continent diversion communities?  You can get involved with UOAA in the following ways:

  • Join our Advocacy Network
  • Join a UOAA Committee seeking new members
  • Become an Ostomy Friend – If you would like to volunteer your time to support and inspire others living with a new ostomy – complete UOAA’s Ostomy Friends Online Course and you will be matched through “Team HOPE” with a new ostomate, creating a personal connection between the two of you.
  • Would you like to become a social media ambassador? Contact our Communications and Outreach Manager to learn more.
  • Interested in leading UOAA on its Board of Directors and ensuring a strong future for the organization? Our election process for a President Elect and 2026 Director at Large will begin in early July. Look for more information on our Become A Leader webpage soon.
  • Attending our 2025 National Conference in Orlando, FL this August? We need volunteers. Contact Sharon Darnov, this year’s Conference Volunteer Coordinator and she will discuss the opportunities available during the event.

Would you like to establish an Affiliated Support Group in your area? Click here to learn more about how to get started and the benefits of affiliating with UOAA.

To all of UOAA’s volunteers: Thank you.  We celebrate your contributions to UOAA today and every day!

‘UOAA Has Been A Lifesaver for Me’ Says New Ostomate

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When first presented with having a “bag” I was terrified. I had a lot of questions…. How will I wear my clothes? Will I still be able to run or lift weights? Will I ever date again? How can I go to the beach? And so many more. I really was not familiar with this at all.

How UOAA Helps: Connie contacted UOAA before surgery earlier this year and is now on the path to health and happiness in life with an ostomy. Donate to help the next ostomate in need.

I did my fair share of googling, but there are so many conflicting pieces of information out there. I also joined some Facebook groups to find some support.  That proved to be very confusing and often quite discouraging. In February of 2023, a week before my surgery, I met with an ostomy nurse for the first time.  That is when it hit me.  She showed me a practice stoma, put my markings on, and had me look in a mirror with a bag.  I realized I needed more information in order to navigate this the best I can.

Finding UOAA

I came home and searched for ostomy support groups in my area and found one. I immediately connected with them, and they shared UOAA’s information with me. I then went on to their website ostomy.org to gain as much knowledge as possible. I went into surgery with a positive attitude because I knew my life would be so much better afterward.

The people I talked to at UOAA’s office were so helpful! They answered all my questions, and I had a lot!  They directed me to many resources like a New Patient Guide and sent me links to videos and other information which I still use. It is reassuring to know that I can reach out with questions and that they will be there for support.

UOAA has been a lifesaver for me. I was overwhelmed following my ostomy surgery. I am so excited that I am feeling better. I am so appreciative of the connections I have been able to make and the educational materials I have received by contacting UOAA.

On February 23, 2023, I had surgery for an end ileostomy, total colectomy, rectopexy, and hernia and bladder repair. After a lifetime of being a prisoner to my colon and GI tract, a ton of medications, and a ridiculous daily twelve-hour ritual that dictated my days, I finally was given hope to improve my quality of life. The day after surgery I already knew this was the right thing for me, and I somehow felt “free” of all the meds and issues I had before.

Helpful Free Resources

UOAA sent me a welcome packet in the mail with a ton of info about nutrition, living with an ostomy, exercise materials, you name it. The coolest thing was the card to use with TSA when I fly… that is going to be a lifesaver, I think! I had many questions about getting back to my normal activities, and I was sent links to Youtube and even Instagram of people that have ostomies and have resumed, or even surpassed, their pre-ostomy fitness routines.

My experience has definitely been better with my local ostomy group and with UOAA by my side.

A link to an occupational therapist was also helpful. I started following and connecting with many of these people, as I have found inspiration in them. I have since called UOAA several more times seeking answers to my questions, concerns, or even worries. Each time they have promptly responded and provided me with continued optimism as I begin this ostomy journey.

UOAA Helped Me Feel ‘Normal’ Again

I think that the biggest thing is that UOAA helped me to feel “normal” and that I am not alone in this.  Starting out with an ostomy is pretty scary, and there are a lot of unknowns. So much of what you read is negative from people that have had problems or are just very discouraged with their situations. UOAA shares the successes, the positives, and the education so that you can learn and grow each day knowing that you don’t have to give up anything at all.

For me, I plan to get back to my full fitness routine once I am fully recovered. I already feel healthier than I have for so many years.  But I know I still have a lot of learning to do… from appliances (I still can’t figure out the best ones for me), to the different types of foods to eat, to stoma care (I still always want to make sure everything is okay), to traveling, exercise, clothing, wraps, connecting with other people with ostomies, and maybe even dating again in my future. My experience has definitely been better with my local ostomy group and with UOAA by my side.

Grateful to Learn More at the National Conference this Summer

I’m also very thankful to have been awarded a CARES scholarship (FYI, current scholarships have been filled) to attend UOAA’s National Conference in Houston. This assistance will allow me to continue on my journey in a healthy and positive way.

As a single 57-year-old mom, I have three grown children (one still in graduate school), a new granddaughter, and two younger children I adopted, one with unique medical needs – it has not been easy. Last year’s hurricane, coupled with the astronomical surgery costs, have me struggling greatly on a teacher’s salary. I have worked really hard to provide for other people, and I’ve never really done for me.

This conference is something I feel is important for me as I want to be able to live my life to the fullest. I strive to be the best Nana, mom, and person I can be. I want to embrace my body, my life with an ostomy, and continually improve my quality of life.. It will allow me to move forward, make connections, gain much-needed knowledge, be an advocate for myself and others, and to stay “OSTOMISTIC!” 

One day I can even envision myself advocating for others in the ostomy world, being active in the ostomy community, and I would love to get to the point where I can even be an inspiration to others.

Connie, you are already inspiring to those of us at UOAA.

Please Donate to UOAA to put other people like Connie on a successful path.  Support quality of life resources, education and advocacy for people living with an ostomy or continent diversion. United Ostomy Associations of America inc. (UOAA) is a 501(c)(3) nonprofit organization and all donations are tax deductible. Thank you!

Shared by Connie Pollina of Naples, Florida

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.

Virtual Support for Ostomy and Other Needs

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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

UOAA Ostomy Support Groups Go Virtual During Pandemic

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By Ed Pfueller, UOAA Communications and Outreach Manager

In-person peer support has always been at the heart of UOAA. Though people worldwide now routinely connect online with others living with an ostomy, the in-person experience of UOAA’s over 300 Affiliated Support Groups continues to endure and grow year after year.

The arrival of COVID-19 is challenging groups to maintain continuity after often decades of holding a routine meeting schedule. Ostomates new and old continue to need support during this time and video conferencing technology is making this happen. Zoom meetings have emerged as the platform of choice as our world strives for human connection during this period of isolation.

The South Texas Ostomy Support Group has been ahead of the curve and before this current crisis was already live-streaming with Zoom meetings as an option to in-person attendance. “Now that we are not able to meet up, we are still using the same meeting ID (link) but now that’s our only form of meeting,” says group president Christine Miller.

Christine recognizes that some may struggle to adapt to the new technology. “I made sure it was in the newsletter so those who needed help could call me and I could walk them through how to use Zoom prior to the meeting started. I had several calls the day of. It was exciting that we had so many people participate (10 people logged on). It was much less than a normal meeting but it was still heart-warming that they were still participating. We even had a newbie come! It was fun having her because she mentioned some of her problems and I immediately texted our Coloplast rep who jumped on for 15 minutes and became a very last-minute speaker for us.”

The Morris County New Jersey Ostomy Association, which has been in existence for over 40 years, is another group adapting to the times. UOAA Treasurer and the ASG’s board member George Salamy says that, after a trial to test for bugs, he and newsletter editor and webmaster Walter Cummins sent a broadcast email telling everyone they wanted to do a Zoom call.

“On April 15th around 23 people signed on with no issues. It was a mixture of older members and a few younger members, some with spouses, and our group’s WOC nurse,” George reports. “The original purpose of the call was to see how everyone was doing and if they needed anything. Everyone seemed to be okay. We talked about if there were any issues in obtaining products. I indicated UOAA works with the manufacturers and determined there were no manufacturing issues.” George adds, “People talked about shopping, which grocery stores were stocked, and some sanitary things we should all be doing (closing the toilet seat before flushing to eliminate germs). All in all, it went well. One member, who now lives in Florida, signed on and contributed much to the call. We decided to do this in May and will continue if needed. It’s a great way of keeping the members engaged.” After the meeting, members commented and made suggestions about future topics such as; the depression aspects of this “lock-down,” yoga, sound therapy for relaxing, and suggestions on where to shop and which stores had supplies.

Bob Baumel of the Ostomy Association of North Central Oklahoma sees potential in the virtual meetings because the organization’s meetings rotate between locations. “It will be interesting to see how Zoom works for our group. We may actually get better attendance using Zoom than we’ve been getting with physical meetings, considering that members who don’t feel well enough to travel to meetings, or who live far from our meeting locations of Stillwater and Ponca City, may nevertheless join meetings which are conducted electronically. Maybe we’ll like Zoom so much that we decide to continue holding some meetings with Zoom, even after the Coronavirus pandemic is over,” Bob says.

Liz Hiles of the Greater Cincinnati Ostomy Association has already hosted several Zoom calls for her group and hopes participation will increase. “I like the option on a number of levels and hadn’t previously considered it. I need to learn more about how to conduct and make it more productive. I like it for the younger folks who may be on the go or traveling. Though that could also apply to older populations too. I also like it for those that may be homebound or in a facility for whatever reason. Hospital, rehab, nursing etc.” Liz also organized a Zoom call for a group of young adults who all connected at last year’s UOAA National Conference and have tried to stay in touch on Facebook ever since.

Remember even if you have never attended a UOAA support and information group in the past you can always reach out and call a local leader nearby you for support. If they are not holding virtual meetings and you are familiar with the technology, perhaps ask if they need a volunteer like you to help them set it up for the group. Use whatever technology you and your group are comfortable with.

You can also use a landline to call into the group to chat, if you don’t have a smartphone or a camera on your computer. Zoom offers a free version if your group does not want to invest in a professional account. Members will just need to log back in when the meeting time hits its 40-minute limit. In recent weeks Zoom has responded to privacy concerns and it is suggested to use the password option for added security. Also, the Federal Trade Commission recently shared guidelines on staying safe while video conferencing.

This is a time for all of us to reach out and make sure our community is safe and supported. Although we are apart for safety, we can still remain connected and together.

Jennifer Borchek’s Story

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A Journey From Caregiver to Student, Ostomy Patient, and Nurse

My name is Jennifer Borchek, and I am a recent graduate of Chamberlain University with a Bachelor of Science in Nursing. I am a licensed registered nurse. I also have a colostomy. While I know that my condition changed a part of me, I also know that it has never defined me, my career choice, or who I have become.

A Career Path of Care

My passion for nursing stems from the love and care that I showed for my ailing grandmother during her time of need. My grandmother suffered from many health issues that demanded around the clock care. At the age of 15, my mother and I became the primary caregivers for my grandmother, so we relocated into our grandmother’s home to care for her as her needs increased. This responsibility was not something I took lightly. I spent many nights rushing down the stairs to my grandmother’s bedside when I would hear the slightest sound that might mean she needed attention. Eventually, the running up and down the stairs and the weight of my worry became too much; I picked an empty spot on the floor near my grandmother where I would sleep with one eye and ear open. By the time I graduated high school, I had developed a good sense of care and a strong interest in continuing my path in health care. I decided what better way to use my experience than to become a certified nursing assistant?

After my certification, I attended a local community college to complete my general education requirements and earn an Associate Degree of Science with honors. This brought me closer to my dream career of becoming a nurse. During this time, my grandmother passed away, and I took a break from school to work in a nursing home. My caring nature was fulfilled at my job by helping others know that their loved ones were well attended to. While working in this environment, I knew I could achieve more, and I decided to apply to nursing school to begin my path as a registered nurse. Soon after, I was accepted into a Bachelor program for nursing. I knew that it would be a challenge to continue my education, as balancing school, work, and family could be difficult, but I also knew that my dream and ambitions were strong. I was ready to face the academic and scheduling challenges ahead, but I was not prepared for the unexpected health issues that I encountered along the way.

A New Path with a Slight Turn

One day, while walking between classes, I started to feel a nagging pressure in my genital area. It became sporadic and seemed to have no pattern or reason for occurring. It would oddly come and go regardless of what I was doing at the time. I thought it would just go away, but it persisted. I spent countless months going back and forth to the gynecologist with the same concern. Consistent medical testing provided no reasons for the pain. For more than a year, I felt as though I was wanting and eventually begging to be heard by the doctor. Examination after examination, I started to think that maybe this was all in my head, and at times some doctors and nurses suggested that too. This was eventually disproved one evening when I felt a sudden burst of blood run down my legs after a hot bath. I rushed to the emergency room only to be told that I was “fine” and to follow up with my gynecologist. I went home that night heartbroken and confused; how could this not be enough to diagnose my health issue? So, yet again, I booked another appointment and headed over to the gynecologist’s office that I’d been to so many times before. After I was examined, the doctor removed her gloves, looked at me and said, “This is not your vagina anymore; this is your rectum. Go to the colorectal surgeon and tell them that you’re bleeding.” She walked out of the room without saying another word. I couldn’t even begin to comprehend what she was saying. Why would I need a surgeon? What does a colorectal surgeon have to do with my vagina? I was filled with a furious, confused, frustrated rage, and I was scared. I left with more questions than I arrived with, and now I was heading into unfamiliar territory. Did I have cancer? What kind of surgery would I need?

I later booked an appointment with a knowledgeable and focused colorectal surgeon at a well-respected teaching hospital. It took three very long weeks for my appointment date to arrive.

Diagnosis over Despair

I met the colorectal surgeon and he told me I had to be diagnosed under anesthesia. He suggested it was an anal fistula during the initial appointment. I was not sure what this diagnosis meant or how it happened, but in all, I liked and trusted this doctor. I felt as though I finally found someone who understood what I was going through and could diagnose what I had been complaining about for over a year. I scheduled the procedure during my one-week break from school. I liked that the doctor not only respected me and my concerns and feelings, but I also appreciated that he was very understanding of my desire to become a nurse. He helped me understand that my condition would not prevent me from living a normal life and achieving my degree.

Weeks later, I underwent anesthesia to be diagnosed. My surgeon told me after that I needed more surgeries to treat my newly discovered health issue. I had a rectovaginal fistula and he informed me that I had had it for at least five years. He also stated there was no exact reason why I had developed a fistula. While this made complete sense looking back at all my symptoms, I still cried when I heard this report. Suddenly, all the missing pieces were finally fitting together.

I had a diagnosis, but this was not the end of my battle. I underwent six separate surgeries all while maintaining honors in nursing school. The most recent was my ostomy surgery. During this time, I dropped down to only taking one class and had been unable to work a career-related job because of my health needs. The hours of studying were long and strenuous, but I fought through recovery one day at a time. Hauling heavy books and running from class to class were no longer a part of my day. Healing was just as important as learning, and I managed to balance the two. I often studied while soaking in the bathtub, as this was the doctor’s order to help the healing process.

During the increased workload of nursing school, I met two very caring friends, Laura and Bert, who helped me along the way. They were there for me when things got rough and made sure I didn’t fall behind in school during my health obstacles. I asked for health-related accommodations and was able to have Laura and Bert with me in every class and during clinical. This was a way to be sure that I would have the support and care if necessary. As a new ostomate, I knew anything can happen spontaneously. Having caring and trusting friends nearby encouraged me to relax about my condition and focus on my studies.

More Frustration, but Still Focused

Throughout my path, I was somewhat saddened to learn that ostomy surgery was a necessity. I understood that my fistula was not healing with the multiple surgeries that were performed, so the ostomy became a part of something I learned to accept. Even now my focus is to heal, rather than stress the need to reverse my ostomy before my fistula has completely healed. I was informed by my colorectal surgeon that rushing the process could result in the same challenges I had when I started my journey.

Jennifer with her close friend Jenell, left, whom she met at a UOAA Affiliated Support Group Meeting in Illinois.

Finding Friendship and Support through the Flaws

During my hospital stay for my ostomy surgery, my Wound, Ostomy and Continence (WOC) Nurse informed me that the Loyola University Medical Center held monthly ostomy support group meetings (One of 315 UOAA Affiliated Support Groups in the U.S.) and that she thought it would be beneficial for me to attend. She mentioned a young woman around my age who had recently had surgery. I thought it couldn’t hurt to show up.

I hoped to gain tips on care, products and living life differently with what seemed to be a flawed digestive system. I had already researched some of this online and in magazines, but I decided that more information could not hurt. Three weeks after major surgery, I walked through the door of the meeting room, still in pain and feeling a bit awkward about the whole thing. I sat down behind the youngest person in the room. She turned around and immediately greeted me with a friendly smile and introduced herself and her mom to me. She is in her late 20’s, her name is Jenell, and her stoma’s name is Piglet. Suddenly, I didn’t feel so nervous when Jenell asked why I came to the meeting. When I told her my story she said that it was unlike any story she had heard before. We spent the rest of the meeting talking about all things ostomy. We exchanged telephone numbers after the meeting and quickly became good friends.

Jenell eventually shared her own story with me and the story of naming her ostomy. Most ostomates feel naming their stoma helps them accept the transition of having an ostomy. With Jenell’s encouragement, I named my stoma “Rosita,” symbolizing that an ostomy reminds me of a rose. Jenell has helped me in so many ways by encouraging me about my health condition; she gave me confidence and showed me that even though my body changed, it doesn’t mean I changed as a person. She also taught me how to handle certain situations. For example, because of our invisible illnesses, we feel the need to educate the public on unseen chronic physical conditions. Together, the four of us – myself and Jenell and our stomas, Piglet and Rosita – make quite a team. We have a lot to be concerned about, but we also have a great future and much to be thankful for. We’ll face more challenges, but we’ll do it together.

My own experiences have helped me decide that I want to become a WOC Nurse and tell others with the same condition that they also can live a normal life. I want to help others with the transition of becoming an ostomate. I want others to know that they can follow their dreams, share their successes, lead by example, and show care from their experiences. I decorated my graduation cap to celebrate my decision and I included Rosita in my design to recognize that I have successfully overcome my challenges, and to show my ostomy is part of me and part of my future.

I am ecstatic to be sending out applications to be hired as a registered nurse because I never thought this day would come due to all my uncertain health issues. However, I will have to wait until my next surgery and through recovery. I know I’ll get there eventually because my challenges will not stop my dream!

Appreciation

All in all, I am very grateful for those I have in my life who have supported me: for Jenell for her friendship, for my surgeon with his knowledge and talents, for the WOC nurse that helped me get through my transition of being an ostomate, for my instructors for teaching me so well, for my classmates Laura and Bert and all the support they gave me, for Rosita for being so accommodating of my ongoing issues, and most importantly for my mother to whom I attribute my success. She encouraged my caring nature, has kept me strong and motivated, has lifted me when my spirits were low, and she is the reason I have fought so hard to become a registered nurse!

Reach Out for Ostomy Support

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You are not alone, A Community of Support is Here to Help

By Ellyn Mantell

Upon returning from a day of errands, my hands full of packages and bags of food, the phone rings, and it is a familiar call. It is from a woman who is fighting tears (this I recognize from the many calls I receive) and immediately, bags and packages left on the floor, I go into SUPPORT mode. I imagine this lady has used every bit of determination and perhaps energy she has to call a total stranger to discuss the most intimate details of her health and anatomy. She needs my full and undivided attention, because if I am remiss in that area, she may never reach out for help again. Before we even move past the pleasantries of conversation (hello, how are you?) I know she has been through so much. She will tell me the details, and each survivor is unique, but I already know she is scared, suffering and feeling terribly alone.

This lady tells me she is extremely disappointed because she just discovered that her colostomy, which resulted from the loss of some of her colon, will not be reversed, as she had hoped. It is too dangerous, and her ulcerative colitis is rearing its ugly head. Instead of the reversal, she needs her colon and rectum removed, and will, therefore, have an ileostomy. It has taken her a year, she tells me, to accept what she thought was a temporary colostomy, and now she will need a permanent ileostomy. Not only is her head spinning, but she is feeling like she has lost total control of her life.

These are feelings we all have, and my heart is right there with her as she laments the loss of yet another part of her body. Looking ahead to at least another major surgery, we discuss the fact that she is in mourning and grieving, and then her tears began to flow. I tell her to please cry, sob, let out her feelings, whatever they may be, I am up to the task of listening and comforting. After all, I have had 23 major abdominal surgeries…I have had my share of tears and need for comfort.

We end the phone call with each of us making a promise: she will attend our next Ostomy Support Group at Overlook Medical Center in Summit, New Jersey, and I will be there to listen to her fears and concerns as long as she is in need of sharing them. I told her I wear a flower at each of the Support Group meetings I lead, because I have had so many sent to me over the years and that it is a great way of identifying myself to new members. Flowers always bring a smile to others. She will find me the day of the meeting, because I will be waiting in the foyer to bring her in, make her feel comfortable, introduce her to many like herself, and show her how special she is for reaching out and asking for SUPPORT!

Reach Out to a UOAA Affiliated Support Group near you and learn more about the emotional impact of ostomy surgery.

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

 

The Support We Get From Support Groups

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Walk Through that Door and You Might Surprise Yourself

 

By Ellyn Mantell

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

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

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

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

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

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

 

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