Tag Archive for: Support Groups

We All Need Ostomy Friends

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Why You Should Join UOAA as an Official Member

By Alyssa Zeldenrust

(National Conference attendee since 2011, DuPage County Support Group (suburban Chicago), Co-Chair of Events for Young Adults)

UOAA friends, educational tools, and vendor fairs have been lifesavers for me, so I’d like to share a bit about why I’m a member and what UOAA has to offer.

United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) nonprofit organization that supports, empowers, and advocates for the 725,000 to 1 million of us Americans who are living with an ostomy or continent diversion (like a J-Pouch.) There is no need to feel alone, approximately 100,000 new life-saving ostomy surgeries are performed annually in the United States.

Without UOAA and medically diverse friends, I don’t know where I’d be today.

You can join one of the 300+ Affiliated Support Groups in the U.S. for local peer support and information. Whether you’re new or an ostomy veteran, you can get a lot out of UOAA resources.

I make sure every younger person I see at UOAA’s National Conference is welcomed into our group.

In my personal experience with my local support group, it’s a great way you can make friends who truly understand your situation. If you’re an ostomy veteran, you’re incredibly important to the new members of the group because you can guide them through difficult situations. Local ostomy friends are great because you can do social events in addition to support group meetings. I’ve gone to concerts, dinners, and parties with local buddies and it makes me feel so welcomed because nobody judges my body and we all tend to have a little bit of a dark sense of humor after a few years of illness or surgery.

Everyone should also become an official National Member, there is a membership for medical professionals as well. UOAA offers the National Membership for Individuals for an annual fee of $20.00. As an Individual Member you will receive UOAA’s:

  • National Membership pin and a stoma rose pin
  • Monthly e-Newsletter
  • New Ostomy Patient Guide
  • Plus, you’ll be notified when new or updated educational materials are available.
  • Have voting rights for our national elections
  • Can be nominated to be elected to serve on our Board of Directors
  • Will get a membership packet that includes a special promotion code to subscribe to The Phoenix magazine at a discounted rate.

Joining is also about standing up and being counted for advocacy purposes.

When I was too sick to attend the Run for Resilience Ostomy 5k my parents and fellow support group members made sure I was there in spirit with my face on masks.

Some local support groups host regional conferences that can be great. I had so much fun at the Midwest Regional Conference when I was lucky enough to go, and I left with a bunch of notes and new products to try.

National conferences are usually held every two years (Houston, Texas Aug 11-13, 2022 is next!) and are major events that turn me into a tornado of attempted hospitality. I make it my personal mission to find all the younger crowd and make sure nobody is left out and everyone has a chance to bond outside of the educational sessions. We have fun going all out with the parties and dancing up a storm. One of my favorite things has always been the vendor fair because you always find new things to try, and you can talk to people directly about their product. The educational sessions are so good that sometimes I truly have trouble choosing, so then we split up and take notes for each other.

A few people admitted to me later that they didn’t expect to leave with new, actual friends. That sort of thing just makes my heart happy. Without UOAA and medically diverse friends, I don’t know where I’d be today.

 

A version of this article first appeared on Allysa’s blog Partially Unstuffed

 

 

New Ostomates Deserve Our Best

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By Ellyn Mantell

Welcome to my fantasy.

We all have our fantasies, so come along with me as I describe one of mine…new ostomates (those with ileostomy, colostomy or urostomy, all having had stoma surgery) would begin their adjustment to their new life with all of their questions answered, they would have knowledge and be welcomed into an Ostomy Support Group, they would have a connection with a Wound, Ostomy, and Continence Nurse (WOCN) and they would recognize what a gift, what a lifesaver an ostomy is.

My concern is that this is not the usual for ostomates, either new or even those who have them for many years. In New Jersey, particularly where I live, there are many resources available, and yet, even in our sophisticated arena, many ostomates leave the hospital uninformed and underserved. Prior to Covid-19, I visited patients in the hospital or in rehab facilities to answer their questions. I brought journals and pens so they could write their emotions, concerns, and observations, and refer back to their notes as they made progress. I am so anxious to return to that important undertaking as soon as it is safe to do so.

When I had my surgery in March of 2014, my surgeon told me I would be in the hospital for 5-7 days. However, I felt so well, so quickly, that I was able to leave 4 days later. That was pushing the envelope, but I was so used to recovering from abdominal surgeries, having had 22 before that, my ability to go into recovery mode was well-entrenched. The majority of patients need so much more time, and now, even 4 days is more than they are offered.

Back to my fantasy, and my pipe dream of a great transition for new ostomates:

How can questions be answered, and knowledge gained as needed? 

The majority of ostomies, even those performed in an emergent situation, require marking the abdomen for placement of the stoma (opening.) That is typically done by the Wound, Ostomy, and Continence Nurse (WOCN) and that is the person who comes to the patient’s room post-op to begin to prepare the ostomate for life at home. In an ideal world, the WOC nurse has written information to share, which once home, will make more sense, and provides contact information for any questions. Additionally, the ostomate is put in touch with the United Ostomy Associations of America to become part of a bigger group of kindred people.

How do we find Ostomy Support Groups in our area?

I am involved in three Support Groups, becoming president of one already formed when I had my ileostomy, and then worked with WOC nurses at two other hospitals in the area to form new ones. Until Covid hit, these were growing so nicely. But we are meeting virtually now, and staying as close as possible, knowing that the day will come when we are back together. It is wonderful to see “my people” who share my concerns, experiences and fears and accomplishments. We help each other in countless ways. People reach out to me through the WOC nurses in the area, United Ostomy Associations of America, The Phoenix Magazine, the American Cancer Society, three hospitals, and through word of mouth. Because I am so open and revealing about my ileostomy and Lily, my stoma, I believe my name pops into the minds of people when they know someone in need.

Ostomies are Lifesavers! “Read all about it!”

An ostomy provides the gift of health for many, many medical situations, including cancer, ulcerative colitis, Crohn’s disease, diverticulitis, motility issues and devastating organ injury. We live in good times for our supplies and the ability to try new and innovative appliances and accessories. The Phoenix Magazine is a great resource for all, and assists in wading through the confusion many feel. Motivational stories and practical guidance round out the offerings.

A final word about those we call our Angels…the Wound and Ostomy Nurses.

Establish a relationship with one, and if there is an Ostomy Clinic or Ostomy Center in your area, use it! These nurses are your connection to properly-fitting appliances, the correct supplies and accessories, questions and personal support, as well as the ability to refer to a Support Group. More and more are entering the private sector and providing services such as home visits, particularly to those who cannot travel to a clinic or office, and your surgeon may even have one in the office to help navigate the transition to life as an ostomate. We call our WOC nurses our Angels, and that is exactly what they are, ladies and gentlemen with big wings to support us!

 

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.

When an Ostomy Reversal Plan Takes A U-Turn

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By Ellyn Mantell

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

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

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

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

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

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

 

 

 

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. 

Liz Hiles’ Story

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I  had been increasingly struggling with symptoms for over two years with medical personnel brushing me off because I did not fit the norms for bladder cancer and didn’t check off enough risk factors for it. By the time of diagnosis, at the age of forty, I was perpetually in pain and discomfort, I was periodically urinating blood clots and I was unable to sleep through the night due to the pain and frequent urination. I felt like I spent most of my time and energy running to the restroom. I even had one ED physician laugh at me and assume that I didn’t know my own body well enough to know whether I was urinating blood clots or having issues with my menstruation cycle.

I had my urostomy surgery on September 23, 2016 after receiving a bladder cancer diagnosis on August 12, 2016. I had Stage IV Bladder Cancer with a T4, muscle-invasive tumor.

Having my surgery has allowed me to get back to my own life and start living again…mostly without pain. I’m able to sleep through the night again and I do not spend most of my time running to the restroom.

I have been working in a pediatric GI office since 2012, so not only was I aware of ostomies and that a person could live a long, productive, great-quality life with an ostomy, I also had my very own personal ostomy support crew. My coworkers are amazing and have been so supportive through everything…several nurses have even given me ostomy/stoma care tips and helped me address potential concerns. One nurse, a true-blue friend, even helped me change my bag a couple of times when I first had my surgery and was in rehab!

Finding Support

During my chemo treatments, I first started looking at online resources and started reaching out. I remembered that my WOCN told me there was an active local ostomy support group. It wasn’t until November 2017 that I was physically able to make any meetings in person.

Encountering the Greater Cincinnati Ostomy Association GCOA was the best connection I could have made post-everything. I originally tried to connect with people through the American Cancer Society and the Cancer Support Community, but bladder cancer is sort of a red-headed stepchild of the cancer community. It affects many on a number of levels, but NO ONE talks about. Not everyone diagnosed with bladder cancer has to go through the extreme treatment measures I did, so there are varying experiences within the diagnosis. However, going to the local cancer-focused groups was very frustrating and discouraging for me as most of the people I met there were breast cancer survivors whose experiences did not have any similarities to my own. There were no local bladder cancer-specific groups in my area and there still are not.

When I finally connected with UOAA/GCOA, I found more understanding, empathy, compassion, and comradery in the first meeting than I had in several with the cancer organizations. People definitely made the difference. Online support was okay, but even there I was sometimes frustrated with the set up because it too easily turns into a forum for sharing memes and complaining about their situations. There’s not a lot of educational conversations or intellectual discussions about what I was experiencing, which was something I was craving.

Becoming Active Again

I am still experiencing neuropathy in my feet and ankles as a side effect of the chemo treatments that I will probably deal with for life and I am still working on getting my strength and energy back, but I am gradually reclaiming everything that I did before. I fell shortly after my last chemo treatment and spent about 3 weeks in the hospital/rehab before getting discharged on a Friday and returning to work the following Monday because I had exhausted all of my medical leave and it was either return to work or lose my job. I did not want to deal with the stress of job hunting after all I had been through and going on disability indefinitely was a luxury that I could not afford, so I returned to work completely bald and using a walker. The first day back, I could barely make it from the front door to my office chair. Still, returning to work was one of the best things for me because it forced me to have to rebuild my strength and be active.

I now work 40+ hours a week again with a team I love supporting and I volunteer with the GCOA and Hughes High School, my alma mater, as much as I can. I took over the presidency of the GCOA back in January. I still live alone on the 2nd floor of my quaint, inner-city, 2-bedroom apartment. I enjoy spending time with friends and extended family. Last May, I rented a car and went on a road trip by myself to Columbus, OH to participate in the BCAN Walk to End Bladder Cancer and catch up with some amazing people that I have in my life. I will be taking a plane and train trip in August to attend the UOAA National Conference and go on vacation in upstate New York afterward. I am finally able to start walking and being a bit more active again and have started trying to figure out how to do some of the higher energy things I used to do (like dancing and workout videos) despite the neuropathy, which sometimes makes it hard for me to coordinate my feet. It’s all a process though and I try to take it one day at a time. I’m hoping to be able to take a trip to Argentina in 2020…your attitude and determination are what makes the difference and I’m determined to accomplish things that I have always wanted to do despite the obstacles I’ve had in my past.

Raising Awareness

Both bladder cancer and urostomies are extremely rare and there are huge discrepancies in diagnosis and treatment of bladder cancer, especially with women and minorities. It has been really important to me to bring awareness to both issues because I truly believe that lives can not only be improved, but saved by advocating, educating and raising awareness of bladder cancer and ostomies. So many people immediately think that having your bladder or part of your colon is going to end life as they know it. In part, they are correct, but not in the way that most people think at first thought. People with ostomies can live long, productive lives and be amazing leaders in their communities…just like anyone else. Just because you will always have a medical condition that requires the use of medical equipment does not mean that your life is over. It is different, that’s all. We’re all different though, having an ostomy just makes you extra special.

When my urology oncology surgeon told me that he wanted to remove my bladder (along with various other abdominal parts), I didn’t hesitate at all and said, “Okay. So what’s next?” I knew that my life would be over if I didn’t get an ostomy and I knew that my life would not be over with an ostomy. It was one of the easiest medical decisions I have ever made. He could have asked me if I wanted a cup of coffee it was that easy. That doesn’t mean that I didn’t have struggles and the journey wasn’t a challenge because I did and it was, but I am grateful that I had a choice of life or death and that I was able to choose life so I could get on with mine. Raising awareness for bladder cancer and ostomy awareness means that I could help someone make that life-saving decision that much more quickly and that they would be able to move onto healing and gratitude that much more quickly, instead of being bitter, pissed and depressed over losing a non-essential piece of themselves.

I have raised money, made social media posts, written articles, blog, had discussions, and encouraged others to go outside of their comfort zone to seek support. Additionally, I fairly quickly began being more involved with my local ASG and am committed to thinking outside the box and expanding opportunities to reach people where they are at and, hopefully, encouraging to become/remain involved and to share their own stories.

Staying Positive

I’m alive! I’m not in constant pain and discomfort. I can sleep through the night and not be up every 10 minutes to go the bathroom. I don’t have to do that “gotta go” dance while standing in line for the ladies’ room. I can hook up to my Foley for long trips or binge-watching and not have to move for hours. My bladder does not interrupt me in the middle of the best scenes when I go to the theater. I’m able to concentrate again. I can relieve myself while standing up or writing my name in the snow (gotta see a little humor in the situation)!

My advice is to just focus on living your life. The closer you get to doing everything you did before, the more positive the picture of life with an ostomy becomes. Yes, you can live without those parts and you can still be an active person. Your life and your dreams are still unlimited…it just might take a little extra preparation and planning, depending on your personal diagnosis and situation, but real life and real dreams take hard work, no matter who you are! You have to work for the things in life that you want anyway…no matter who you are or what your circumstance is, but the harder you have to work for something, the more worthwhile, valuable and meaningful it is to you. Only you can make the decision on how meaningful you want your journey to be though.

Overcoming Challenges

Most of my challenges are from my cancer treatments and not from having an ostomy. Still, bending and twisting are sometimes challenges. I do have a hernia that I way too quickly achieved by sneezing and, although it does not typically bother me, it is something to keep in consideration when I am trying new movements or lifting heavier objects. I have neuropathy and slight hearing loss as side effects of my chemo treatments and those are more annoying and challenging than my ostomy issues. Every once in a while, I have a leak, but I generally carry at least a few supplies with me so I just try to catch it quickly, change and move on. I’m really fortunate to have amazing friends, family & coworkers who are really understanding and supportive when these things happen and they don’t bat an eye when I need to deal with these things. Overall, I’ve pretty much learned to have a new definition of “normal” and I take things day by day and slow down when I need to and, most of all, when new things come up, I TRY instead of just giving in.

Advice for those who may need ostomy surgery?

Don’t think twice! No, it isn’t always easy and it isn’t always an easy choice. Sometimes, it’s all very hard. Yes, life will be different, but, in the long run, it’ll be worth it and at least you will still have a life to live.  If you give the ostomy and yourself a chance, having an ostomy will ultimately give you a better quality of life. Also, don’t be afraid to reach out to others who have had similar experiences…that’s how you get through the challenging moments, days, and weeks. Also, I feel like it is critical to share your own story in some way, shape or form. Not only does it help others get through their situations, but it is a great way for you to heal and get through your own story. Sharing your story is a way of honoring yourself and allowing you to shed light on your own strength because many times you don’t realize just how strong you are. Martin Luther King, Jr said, “Our lives begin to end the day we become silent about things that matter.” Keeping your story bottled up inside and not even sharing it with the people you love is detrimental to your journey. You matter and so does your story, so share it.

Making a Difference

Last year, I hosted a virtual Run for Resilience Ostomy 5k walk locally and I had 6 humans and a canine share in a beautiful day at a local park. It was great to share my story with people who hadn’t heard about it before while walking. Prior to my own surgery, my team at work and I would wear blue and green on Ostomy Awareness Day in support of the patients and families we care for.

I have grown up participating in similar events and have always found them inspiring and empowering. This year, we hope to have even more participation and invite everyone to meet at a group meal afterward. I will be attending my first UOAA National Conference in August and I’m excited to make new connections and learn more information that will enable me to assist others in getting back into life after receiving an ostomy. I would like to see others get involved in these events because it gives them connections, information, support and empowerment. There is no substitute for making connections in real life with people who have tackled the same problems, fought similar battles, and, most of all, WON. There is strength in numbers and we are all stronger together.

Service to Country and the Ostomy Community

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Ostomy Support, Love and Giving Back

By Jeanine Gleba, UOAA Advocacy Manager

On November 11th the United States observes Veterans Day to honor all those who have served in the United States Armed Forces. This year at UOAA I’d like to shine a light on two Veterans with ostomies who now continue to serve as volunteer advocates with UOAA in the Advocacy Network. Most recently, they were able to raise ostomy awareness in the state of Texas by garnering not one, not two, but three proclamations from their town, County and the Governor!  

Dan Shockley is an Operation Desert Storm; Operation Enduring Freedom (OEF) and Operation Iraqi Freedom (OIF) veteran.  He served for 22 years in “the world’s greatest Navy” onboard 7 different ships. His last tour before retiring was after 9-11 on the ground in Bahrain in direct support of OEF and OIF between September 2001 – September 2003. In 2012 after his first and only colonoscopy revealed 100 polyps embedded in his colon, rectum and anus, he was diagnosed with a rare gene mutation known as attenuated familial adenomatous polyposis (AFAP). In July 2012 at 51 years of age, he had successful ileostomy surgery at Tripler Army Medical Center, Hawaii.

 Donna Desoto, Dan’s girlfriend, began her Military career in 1976. She was in the last basic training class of The Women’s Army Corps (WACS). She also attended the Medical Lab Assistant school at the Academy of Health Sciences at Ft. Sam Houston, TX. She was then chosen to join the medical research team at Headquarter Co Troop Command at Brook Army Medical Center under the Clinical Investigation Services. She co-invented a vaccine for burn patients and received The Army Commendation Medal for meritorious service of her research between 1976 to 1979.  While serving in the military she was diagnosed with Chronic Interstitial Cystitis. After over a year of trying to save her bladder with an experimental drug instilled in her bladder surgically, she had urostomy surgery. She also had a stroke prior to that due to an allergic reaction to an unknown medicine. It took 25 plus surgeries before removing her bladder. She was in the hospital the whole time leading up to the final removal of her bladder and then was medically retired in 1981.

I recently caught up with them and asked the following questions:

UOAA:          How did you two meet and become a couple?

Dan:            Donna and I met on the Singles with Stomas Facebook group in the summer of 2016. We commented on each other’s posts. In the following months we developed a friendship based on our commonalities. We’re both retired military, left-handed, interested in medical research, and of Scottish descent. In May 2018 she called me suggesting it was time for us to get together. At the end of July I relocated to South Texas to be with her.

UOAA:             Such a great story!

UOAA:          How did you get involved in UOAA?

Dan:           My involvement began as an inpatient at Tripler Army Medical Center, Hawaii, after my surgery. Tripler’s WOC nurse shared with me information about United Ostomy Associations of America. At that point I was eager to share my diagnosis and story with others and UOAA and become an advocate.

UOAA:            It’s so important for people to realize that they can make an impact when they do share their story whether it is inspiring someone else or making the journey a little easier for someone questioning life with an ostomy.  There is also a big need in our advocacy efforts especially legislatively because elected officials want to help their constituents who the issues directly affect and hear their stories.  We can raise so much more awareness when we grow in numbers.

UOAA:           Why do you advocate for ostomates?

Dan:               My life’s focus as a colon cancer warrior, having a rare gene mutation and an ostomy is to be a source for the importance of early detection. It’s also important to me to show that life can go on having an ostomy. I consider my diagnosis a challenge rather than obstacle. That said, there’s an old cliche you can lead a horse to water, however you can’t make it drink. I’ve heard there is a way to influence the horse to drink when it reaches the watering hole. Feed it salt along the way. Hopefully my story will serve as a source of salt for those who read it.

Donna:         The main reason I feel the importance of advocating for ostomates is because I feel increasing awareness is very important and other more well known causes get lots of awareness whereas I see that many people have little or no knowledge of what an ostomy is.  Also, I see a need legislatively for ostomates in areas that should be addressed especially one area I have experienced is the usage of restrooms and other public issues.

UOAA: Why is it important for people to get involved?

Dan:        Projecting a positive outlook is important to me. Having an ostomy is a lifesaving surgery. By sending out positive vibes I receive them back tenfold. I may have been diagnosed with AFAP but my AFAP mantra is: Always Forge Ahead with a Purpose!

Donna:   Being involved with UOAA and my other volunteer efforts (Donna founded Sav-Baby Inc.) has helped me to take my mind and focus away from my medical challenges and pain and allows me the opportunity to reach out to those struggling with their current or ongoing medical issues. Not only can I hopefully be an inspiration to others it is also an opportunity to make new friends and encourage them to get involved in some way such as a being a friend to someone else or becoming an advocate or volunteer.

UOAA:          And you and Dan certainly became friends! One of the most significant things that UOAA does is provide support through our Affiliated Support Groups.  It is one of the top reasons that we get calls into our 800 information line.  People are looking for emotional support and to meet others going through similar experiences so they can learn from each other.

Dan:       I’ve been a member of UOAA support groups in Eagle, Idaho; Carmichael, California, Honolulu, Hawaii and now both of us just started attending meetings at the South Texas Ostomy group in San Antonio, TX.

UOAA:         Do you talk about your ostomy and/or military experience with others?

Dan:        I share my ostomy and military experiences every opportunity that presents itself. As a “live case presentation” for the medical community and ostomy groups I feel it is important to show life can go on as if nothing happened. Being a source of inspiration and encouragement is important to me. It’s been said we’re unable to change the wind. However, we can adjust our sails. After 22 years in the Navy I’m good at adjusting. That’s my story and I’m sticking to it!

Donna:       I talk freely with others about my ostomy. I am no longer ashamed or embarrassed.  I am so proud to be a Canadian who became a US Veteran and citizen. I participate in both military and ostomy groups.  I try my hardest not to let my ostomy limit anything I choose to do in my life.

UOAA:            What does Veterans Day mean to you?

Dan:        Veterans Day is when I reflect on and recognize those who made the ultimate sacrifice to defend our 13 stripes and 50 stars. My father served in the Army during WWII, two of my uncle’s served in the Navy and 1 uncle served in the Marines during the Korean War. My brother served in the Air Force during the Vietnam conflict.

Donna:       Veterans Day is a very emotional day for me for so many reasons. My thoughts and prayers go out to all our Sisters and Brothers who lost their lives for our freedom, as well as those currently serving, those now retired and all of their loved ones.  The real special part of Veterans Day for me is that I was born in Canada. After college I decided to join the US Army and officially become a US citizen. I was so proud the day I became a US citizen and that same proudness was felt when I took my path to become a volunteer member of the US Army.  When my two adopted children were little and my little girl that I saved from abandonment was old enough I would tell them that I was “an Alien who wore combat boots”. They loved to share that story with their friends. My Uncle enlisted in the British Army and his submarine was lost during the war. His mother, my Grandmother, who brought me up in the United States was so sad on Veterans Day as it was forever painful losing her oldest son.

UOAA:             You are both a reminder to me of John F. Kennedy’s inaugural speech, when he said the infamous words, “Ask not what your country can do for you, ask what you can do for your country.”  You both embody “service”.

As Advocacy Manager I am in the unique position to not only hear many amazing ostomy stories of resilience but also to watch many passionate and fascinating people as they take action and work together to achieve a common good cause for our community.  It is truly an honor and a privilege for me to work alongside such dedicated, impressive and patriotic volunteers like Dan and Donna.

Thank you to all Veterans who have or are actively serving America! Happy Veterans Day!

“Here’s my UOAA acronym:” ~ D. Shockley

                                                      Understand (your diagnosis)

                                                      Overcome (adversity)

                                                      Attitude = 100%

                                                      Adapt (to your lifestyle as an ostomate)