73 Years with an Ostomy

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Remembering Ruth Fawley

By Ed Pfueller, UOAA Communications and Outreach Manager

In 1950, Ruth Fawley celebrated her 21st birthday, but the following decade was spent mainly in hospitals. Her ulcerative colitis led to an ostomy in 1951 and multiple unsuccessful intestinal surgeries. At one point, she was in a life-threatening coma for a week. Considering her health struggles, few people at the time might have predicted she would live an active life and reach the age of ninety-four before her passing in 2024.

A turning point in Fawley’s life came with her introduction to Dr. Harry Ellicott Bacon, Professor and Chairman of the Department of Proctology at Temple University Hospital in Philadelphia, Pennsylvania. He performed ileostomy revisions and subsequent surgeries that ultimately allowed her to lead a more normal life.

Dr. Bacon was an internationally renowned and innovative surgeon who prioritized the emotional well-being of his patients. He invited Ruth to a peer support group for women with ostomies and related surgeries.

Ruth worked as an executive secretary and while working at the travel magazine Holiday met many well-known authors, likely sparking her lifelong passion for travel.

She married her longtime husband, J. Russell Fawley, Jr., in 1959. When it came to starting a family, doctors at that time were not sure if a woman with an ileostomy could get pregnant and give birth. “She would later joke that out of the nineteen surgeries she endured, the only time she left the hospital with more than she went in with was when she had her two Cesareans,” remembers her daughter Nancy Fawley.

She thinks her mother would want fellow ostomates reading this article, “To be inspired and know you can have a family, travel and have a long normal life with an ostomy.”

Nancy says her mother was a wonderful cook and loved to garden. Ruth loved the water, whether swimming at the Jersey Shore or doing near-daily water aerobics later in life. Ruth also had a keen artistic eye, loved to sew and was well-known for the dynamic use of colors in her quilts.

Like many of her generation, Ruth carried on quietly in life with an ostomy but had to manage the challenges of short bowel from her many surgeries. She was a longtime supporter and member of UOA and UOAA and an avid reader of The Phoenix Magazine.

A June 2011 article on Army Pilot Bob Cuyler’s story of flying in a combat zone with an ostomy inspired her to write a letter to him. He responded in kind by sending her a Presentation Flag his unit took into active duty, which she cherished for years after. In her return letter, she thanks Cuyler for his service and fortitude and shares that even finding ostomy appliances was difficult in those early days. “An ileostomy was not spoken of and I know the humiliation, embarrassment and stigma attached to it,” she shared. But her sense of humor shines through as she ends her letter joking that the old Ostomy Quarterly magazines used to arrive in plain brown paper wrappers, leading her neighbor to think she was getting Playboy Magazine!

“If I get to the gates of heaven and still have this ostomy pouch I’m turning around!”

Nancy says that her mother shared many Phoenix articles with her over the years so she would have a better understanding of her condition. “I relied on this information when I worked with doctors, health care professionals and hospice caregivers who had little to no experience with patients with an ileostomy,” Nancy says.

In honor of her mother’s memory, Nancy has donated to UOAA at The Phoenix Society Diamond level in part because of UOAA’s continued commitment to ostomy education for both patients and medical professionals.

In her later years, Ruth herself became a caretaker for her husband as he battled with Parkinson’s disease and dementia before his death in 2014. During this time, she created a striking quilt with dynamic colors she entitled “meltdown.” Ruth’s colors live on in the many quilts she gifted to family and friends.

In her final months, Nancy got to hear more stories of her mother’s travels in England and France and a doctor’s direction that a bit of scotch can help in digestion. She thinks her mother would want fellow ostomates reading this article, “To be inspired and know you can have a family, travel and have a long normal life with an ostomy.”

At the end of her 94-years she had just about enough of dealing with it though, “If I get to the gates of heaven and still have this ostomy pouch I’m turning around!” she told her daughter. The amazing mix of humor and resilience required after 73 years with an ostomy still shining through.

 

The Phoenix Society recognizes those individuals who are able to sustain and/or increase their total annual donation of $500 or more during each calendar year. Become a member of The Phoenix Society or donate at any level to help UOAA fulfill its mission to promote the quality of life for people with ostomies and continent diversions through information, support, advocacy, and collaboration. UOAA is thankful for those who give, including Nancy Fawley and the other Diamond and Ruby Level members listed below. 

 

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!

The Early Years of UOAA Reflections on a 20th Anniversary

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By Charlie Grotevant

As someone who underwent successful ileostomy surgery in 1983 followed by immediate membership in the Kankakee, Illinois chapter of United Ostomy Associations (UOA), my history is long. My wife Joyce and I attended several UOA National Conferences during the 1990s and 2000s, making friends from around the country.

In 2014, I began a Memoir entitled The Healthy Years chronicling my life beginning with 1983.  It consists of 162 pages with nearly 60,000 words and photos. There is an abundance of information regarding UOAA, taken from emails, writeups in Affiliated Support Group (ASG) newsletters, notes written shortly following many of the events, etc. This narrative is gleaned from my Memoirs.

Like our symbol, the Phoenix, UOAA rises from the Ashes of UOA

During the UOA years Ken and Linda Aukett served, during different intervals, as President of UOA, including a term for Ken as President of the International Ostomy Association.

Linda led advocacy efforts with elected and appointed government officials and interacted with other health-related support and research organizations.

My visibility with UOA became nationwide when I was the recipient of the 18th annual Great Comebacks Award in 2002. At that time the program was financially sponsored by Convatec and co-sponsored by Crohn’s & Colitis Foundation. UOAA became an additional co-sponsor in 2006.

During March of 2005, it became apparent UOA was planning to dissolve due to financial shortcomings. Contributing to this decision was the withdrawal of the Canadian chapters of UOA to become the Ostomy Canada national organization several years prior. UOA announced it would cease operations on September 30, 2005 after 43 years of providing essential services.

UOAA C0-Founder Linda Aukett at the Capitol in Washington, D.C. while serving as President of DDNC (Digestive Diseases National Coalition).

Ken and Linda Aukett were determined that a national ostomy support organization was essential for the continued support and education of approximately 750,000 Americans, their caregivers, and patients considering or needing ostomy surgery. Pursuing advocacy issues, as had been done with UOA, was equally important.

The Auketts began creating a Steering Committee to establish the successor organization.  It was to become an organization of individual Affiliated Support Groups (ASGs) operating under the umbrella of the national organization. ASGs would collect dues from individual members to maintain their respective local groups and would send ASG dues to UOAA.

UOA had served as a national organization with several hundred Chapters throughout the country. UOA published the Ostomy Quarterly magazine and sponsored a Youth Rally camp as well many other functions on the national level.

Mary Jane Wolfe had a lead role in setting up the new organization, helping come up with the name United Ostomy Associations of America (UOAA), but did not want to be on the Steering Committee. She recommended me to Ken who put the “hard sell” on this busy Illinois farmer to be the 7th member. Mary Jane was also a major force in the prior UOA Rally, leading by example from her wheelchair.

Charlie and Joyce, center, with Mary Jane Wolfe, left, and NFL legend and ostomy advocate Rolf Benirschke, right, at a National Conference.

The Steering Committee consisted of Ken as President, Julielynn Gibbons as Vice President, Ginnie Kasten as Secretary, Dave Rudzin as Treasurer, Ron Titlebaum and myself as Directors. Linda Aukett was officially recognized as the Advocacy Chair. George Salamy was named as Chair of the Trustees.

A major role incorporating UOAA, securing 50 (c3) tax-exempt status, and assisting with writing the Constitution of UOAA was filled by Philadelphia lawyer, Sheldon Sokol, working pro bono, for whom we are forever grateful.

Bob Baumel, who had served as webmaster for UOA, became and expanded the webmaster duties with UOAA. Thank you, Bob for all you have done and continue to do.

Ian Settlemire, who had served as Editor of Ostomy Quarterly, created The Phoenix magazine, the official publication of the UOAA. A free copy was sent to each former Ostomy Quarterly subscriber in December of 2005. Subscription fees to The Phoenix have been an important source of revenue for the UOAA for the past 20 years.

The final UOA National Conference was held August 3rd-6th in Anaheim, California with UOAA given time to tell of the new organization and respond to questions and concerns.

The Steering Committee members were given assignments to meet with vendors, UOA officials, medical professionals, and health service providers. In addition to the explanatory sessions, I was to meet with Dave Johnson, VP of Convatec, telling the goals of UOAA and requesting financial support. I was well acquainted with Dave because of the Great Comebacks Program and subsequent publicity events. He pledged a significant monetary commitment to UOAA.

Outhouse to White House

As a farm boy, who was 9 ½ years old before we had running water and indoor plumbing, I have truthfully gone from the outhouse to the White House. The White House adventure was arranged by Convatec at the time of the 2007 Great Comebacks National Awards in Washington, DC, with separate Congressional lobbying calls on the agenda, carried out the next day.

Charlie with President George W. Bush at the White House in 2007.

A White House after hours visit was hosted by Marvin Bush, younger brother of President George W. Bush.  Marvin is a member of the 5P Club, People who Poop or Pee in a Plastic Pouch, a survivor of IBD.

Marvin needed to leave prior to the arranged time for the mini bus to take us back to the hotel.  Then the President arrived on the scene, and this group of 13 had an interesting 25 minutes of non-political chit-chat.

Even though Convatec has undergone ownership changes, I remain forever grateful for all they have done for us and other recipients of the Great Comebacks Award.

Early Years of UOAA

On October 1st, 2005, UOAA became an official legal entity and the Steering Committee became the initial Membership Board of Directors, a bare-bones organization.  In later years after multiple staff positions were created, the designation MBoD became Board of Directors.

Linda arranged for the UOA toll-free number to be transferred to UOAA, with each Board member to take the calls one day a week. Lots of calls on some of my assigned days into an answering machine. I responded as soon as possible. Some wanted genuine information and encouragement, but a few wanted a shoulder to cry on or complain.

Coco, the Colossal Colon at the 2007 UOAA National Conference. It had been previously featured on The Today Show and UOAA volunteers appeared with it on an episode of Shipping Wars.

I was also happy to server as Liaison to Youth Rally, which became separate nonprofit organization.  I became a volunteer counselor in 2006 and continued as a counselor through 2012 when my hearing was deteriorating badly and I considered myself a liability rather than an asset to the Rally. Those weeklong camps at various college campuses were the most rewarding and most tiring weeks of those years. I continue to support Youth Rally financially.

2006 was a busy year for UOAA and others on the MBoD. Early that year, Joan McGorry was hired as Office Administrator to work out of her home.  This eliminated the weekly telephone response sessions on the part of those of us on the MBoD.

In February, I received a call from a WOC nurse in southern Illinois telling of a young lady being denied insurance coverage for ostomy supplies.  I consulted Linda Aukett regarding this issue and received guidance.

A few weeks later, I was invited by Convatec to speak at a national sales conference in New Jersey. At the sales conference, I met with the Convatec Director of Health Economics and Reimbursement and a separate healthcare consultant to discuss ways to proceed with the Illinois reimbursement issue.

A month later, following the testimony of the aggrieved ostomy patient to the Illinois Insurance Committee, I presented testimony and supporting evidence. An insurance lobbyist in his lawyer language quickly denied the need for mandatory coverage.

The Chair of the Committee appointed a sub-committee to study the issue. Net result, SB 2444, an amendment to the Illinois Insurance Code, passed requiring coverage for ostomy supplies, although allowing deductibles to occur. A victory for UOAA!

Julielynn Gibbons, Bob Baker and Charlie as UOAA reps at the 2007 GYGIG 3-day bike ride.

Also in 2006, UOAA became a co-sponsor and beneficiary of Get Your Guts In Gear (GYGIG), a 3-day bike ride fundraiser for UOAA, Crohn’s & Colitis Foundation, The Colon Club, and other organizations focused on IBD, colorectal cancer, and the needs of ostomy patients. This was the third year of the GYGIG event. In each of the first two years I rode, UOAA received $60,000.

In 2007, UOAA had additions with Mary Jane Wolfe, Kristin Knipp, Lynne Kramer and LeeAnn Barcus joining the MBoD.

A Support Group Ambassador Program was also initiated with the goal of surfacing volunteers to act throughout their respective states and regions in efforts to gain more ASGs and increase membership.

On a personal level, because of three winter months on the Gulf Coast of Florida, I visited and spoke to as many as a dozen ostomy support groups, facilitating changes in leadership and bringing one major hospital into UOAA. I did the same in Illinois.

2008 brought Bob Baker onto the UOAA MBoD. I was acquainted with Bob because of his Regional Great Comebacks Award. We also shared a GYGIG ride in 2007. Bob has now rejoined the UOAA Board.

One of the basic foundations of UOAA is the need for constant and competent advocacy with elected and appointed officials.

Susan Burns also joined the MBoD that year followed by Jim Bob Murray the next year. Millie Parker then came onto MBoD in another year or two as did Justin Blum. Many more followed.

At the end of 2008, I exited the MBoD because the hearing deficit was reducing my effectiveness. I continued as UOAA Ambassador and remain willing to call on ASGs and individuals when asked. I also continue leading the Kankakee ASG.

As I conclude this narrative, I praise Ken and Linda Aukett for all they have done and what Ken continues to do with years of total involvement in the greater ostomy community. They became the heart and soul of UOA, UOAA, and the International Ostomy Association, traveling to every continent except Antarctica.

Linda also served as the UOAA representative on the Digestive Diseases National Coalition (DDNC) Board and was later Chaired that organization, linking 23 national organizations together in advocating for common interests.

Evidence of Linda’s advocacy efforts was shown in 2011 when Ken and I accompanied a former US Senate staffer who was rudely examined by TSA personnel as he prepared to board a flight.

A few years prior, UOAA led the effort in getting the Blue Notification Card accepted by TSA as proper notification of special medical conditions and the need for the screening to be done in a discreet manner. Even so, continued insufficient training of some TSA personnel continued to result in occasional major mistreatments.

2013 UOAA National Conference in Jacksonville, FL.

A meeting, arranged by the insider using his personal friendship with the President of the Senate, occurred in the TSA office. TSA Director John Pistole, TSA Legal Counsel Jackson, and the Director of Operations were with us for an hour to meet and discuss the problems still arising during TSA screenings.

During our self-introductions, when Ken identified himself, the Legal Counsel asked of Linda. Jackson, quickly stated to the effect that ‘I have had many conversations with Linda and we continue to work on solutions for the problems at hand. Yes, the name Aukett brought instant recognition.

One of the greatest losses to our ostomy community was the passing of Linda in 2013 due to cancer. Her knowledge and abilities, whether with Youth Rally, with UOA and UOAA functions, and especially with advocacy efforts on Capitol Hill where she was known by elected and appointed officials is beyond comparison in my opinion.

Thank you, Ken and Linda for your ‘over and above’ efforts throughout many years of helping others.

Be the Future

As for my thoughts for the future of UOAA. One of the basic foundations of UOAA is the need for constant and competent advocacy with elected and appointed officials. This is more so than ever before due to the political divisiveness threatening all aspects of everyone’s life. UOAA has a wonderful Advocacy Program with many ways to get involved.

With all the inaccurate information floating through all media, including websites, blogs, etc., it is critical for UOAA to be the voice of accuracy. This will require increased determination on the part of everyone associated with UOAA to be the voice on the local level as well as nationally. Yes, UOAA can go forward if enough concerned people become UOAA members and come forward to volunteer and assist in meeting the challenges before us.

I invite others to share historical UOAA memories and let me know if everything I have shared is accurate. We hope to see many of you in Orlando for the 2025 National Conference where we will take time to celebrate 20 Years of UOAA!