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.

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!

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

 

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

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.