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!

 

Friends and Fun: How I was able to Maintain Friendships and Enjoy Social Activities While Living with an Ostomy

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By LaTesha Harrison-Thompson

Living with an ostomy can bring about significant changes in your life, but it doesn’t mean you have to give up your social life or let go of cherished friendships. Here’s my story of how I kept my friendships and social life intact while living with an ostomy during my teenage/young adult years.

My friends were more than willing to make small accommodations, whether that meant picking a restaurant with accessible restrooms or planning less physically demanding outings.

Open Communication

Although this was extremely hard, transparency was my first step. I found it helpful to explain my condition to my close friends. It wasn’t always easy, but being honest about my needs and limitations made a world of difference. Their support and understanding grew out of their awareness of my situation, turning what could have been an awkward subject into a source of mutual trust and strength. I didn’t reveal my condition to everyone and most family did not know but the small core that did know was understanding and accepting. Trusting your friends and family to care for you when you are unable is a huge step.

Choosing Comfort and Confidence

I took some time to learn about my new normal, which included finding the right ostomy supplies that worked for me. Comfortable and discreet options boosted my confidence, making me feel more at ease in social settings. This confidence was key to enjoying myself without constantly worrying about my ostomy.

Planning Ahead

For outings and get-togethers, a bit of planning went a long way. I always carried a small kit with extra supplies, and scouted out restrooms when I arrived at new places. This allowed me to relax and have fun without the nagging fear of unexpected issues.

Adapting Activities

I realized that while some activities might require slight adjustments, I didn’t have to miss out. Whether it was cheerleading, going to the mall, or just a night out, finding ways to adapt and participate fully kept my social life vibrant and my confidence boosted. My friends were more than willing to make small accommodations, whether that meant picking a restaurant with accessible restrooms or planning less physically demanding outings.

Lean on Support Groups

Connecting with others who have similar experiences can provide a unique form of support and camaraderie. Although I didn’t have this opportunity growing up, joining an ostomy support group can offer practical tips and emotional encouragement, and you can make great friends who truly understand your journey.


Staying Positive and Proactive

Maintaining a positive attitude was crucial. Instead of focusing on limitations, I embraced what I could still do and enjoyed the moments with friends to the fullest. By staying proactive in managing my health and well-being, I found that my ostomy became just a small part of my life rather than a barrier.

Living with an ostomy certainly comes with its challenges, but with the right mindset and strategies, friendships and social activities don’t have to take a backseat. By prioritizing communication, confidence, and adaptability, I discovered that I could still lead a fulfilling and fun-filled life.

My UOAA Story- Stanley Cooper

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20 years ago, UOAA formed and continued a legacy of advocacy and support for the ostomy community.

I had my Ostomy Surgery in 1992 due to ulcerative colitis. At that time the national organization for our community was the United Ostomy Associations (UOA). Around that time UOA was working on a project to increase the allowable amount of ostomy supplies a person can order. They wanted to double the amount that a person could order, because if a patient had skin problems or leakage problems a person would need more supplies than normal.  As it stood the allowable wasn’t enough and if a person needed more they had to be paid for out of pocket and UOA members were calling to see if something could be done. That was the start of the Advocacy program at UOA.

When UOA folded in 2005 former members put together the new organization, United Ostomy Associations of America (UOAA) it was determined that the new organization would have an Advocacy Program from the start. That was a confirmation to us all, as to how important an advocacy program is to UOAA and its members. Today, that legacy continues with an active advocacy network and national advocacy goals everyone should be involved with.

When I had my surgery, I was a married man with four daughters and worried about the future and whether I would be able to provide for them. My ET Nurse (Entrostomal Therapist), today’s WOC Nurse, gave my wife information on the local support group. My wife and I attended a meeting and after talking to a few attendees, I began to feel a lot better about myself.  I was so appreciative of the Information that I had received that I decided I needed to do more and at the next meeting, they had sample letters that they were asking people to type up and send to their senators. One member brought the letter back after a UOA National Conference and made copies of it. My brother had given me his old computer and printer so I retyped the letter up and printed out 50 copies, printed out envelopes and donated the stamps to send them for the group. All someone would have to do is sign the letter, put it in the envelope and mail it.  After that, the board of directors of the support group asked me and my wife to join their board. We gladly accepted.

We went to two of our first national conferences in 1995, what an eye-opener for both of us. there were so many sessions that both of us wanted to attend but couldn’t make it to all of them because some were at the same time, so my wife said,” how about we split up and report back to each other at the end of the day.” It was fantastic. A few years later UOA decided it was going to dissolve. We were devastated.

During the holiday season Stanley Cooper enjoys playing Santa Claus in the Philadelphia area.

We thought we were going to our last conference in Anaheim, California when it was announced that a new organization was forming. That was a huge relief to me and my family to know that there would be a national organization with the same values as the former organization to fulfill the emotional needs and be able to help any future family members or friends that someday may find out that they need to have an ostomy.

UOAA has continued the tradition and I was honored to volunteer when it came to Philadelphia in 2019. This year UOAA is hosting its 9th National Conference August 14-16, 2025 in Orlando, Florida.

Today UOAA also has an outstanding website here with ostomy.org that patients and medical professionals can go to and print out information on ostomy management and more. This is a huge help to new ostomy patients and ostomates who have had their ostomies for a while and are having problems can solve it on their own or postpone their need until they can get to see a doctor or WOC Nurse.

UOAA also has a Network of Affiliated Support Groups around the country where patients can go to a meeting and talk to other ostomates about having an ostomy, get answers to their questions such as will I be able to return to work? What type of clothing will I be able to wear? Will I be able to have relations with my husband, wife, boyfriend, girlfriend or significant other? Just some of the questions that have come out and there are hundreds more. Local Support Groups are vital to all ostomy patients and can be found on UOAA’s website with their support group finder.

Ostomies are lifesavers and I’ve been active in my retirement as a bakery worker and have gotten to serve as a Santa Claus in my community around Philadelphia.

We continue to support Ostomy Awareness Day each year and also any advocacy actions we can take on a state or local level. We’re all lucky UOAA is here for our community. Happy 20th Anniversary!

If you’d like to share a story about how UOAA has helped you or others in the past 20 years with ostomy advocacy, support, educational resources, events or more- email us at info@ostomy.org

The Impact of Advocacy: Healing Yourself and Uplifting Others

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By Nicole Richards

“When you stand and share your story in an empowering way, your story will heal you and your story will heal someone else.” – Iyanla Vanzant

I believe this quote accurately describes the importance advocacy is to the ostomy community. Living with an ostomy is a true test to one’s physical and emotional health. Raising awareness is sharing our own personal journey of those physical and emotional experiences with others. It’s only with this vulnerable truth, that we allow other ostomates to normalize their situation. Through advocacy we not only work on our own healing journey, but we inspire and support others on theirs.

This past summer I answered the call to take action from UOAA, and I filed a proclamation request with my state’s Governor for Ostomy Awareness Day. While writing the request I opened myself up to a very vulnerable part of my past that I had stuffed away and never fully processed. More specifically, writing the proclamation request made me realize just how much I minimized my own experience of what life was like pre-ostomy. Another realization I had was that I needed to be more compassionate and forgiving of myself for all that I had been through during that time. This was such an “ah ha” moment for me. I am very grateful for the opportunity I had to advocate and share my story. Had I not have taken the time to revisit the years of my life leading up to ostomy surgery I may not have had the opportunity to heal that part of my past.

The Power of Your Story

It is not only healing for ourselves; it is validating for others who are going through similar struggles. Telling your own personal story helps other ostomates feel less lonely on their ostomy journey; it creates connection and community. Talking about your experiences is not just an act of self-care but an act of service to others.

We experience life differently from one another. My perspective and experience could be completely opposite than that of the next person. With that being said, we tend to resonate with people whose journey is similar. Additionally, many of us not only have an ostomy, but we have an underlying health condition that brought us to the point of needing ostomy surgery. The fact that there are numerous reasons a person might need an ostomy makes us such a diverse group of people. This is why your unique ostomy story matters so much.

These personal stories are more memorable than facts, so they are indispensable in advocacy efforts.

By listening to other people’s perspectives and experiences we create awareness and learn something we didn’t understand. Telling your story is not only important for healing of yourself and others, but ostomies carry many misconceptions. Unfortunately, those misconceptions lead to stigmas and barriers. Through advocacy and sharing our story we aid in the breakdown of those barriers and collectively shed light on the realities of living with an ostomy. Equally important when it comes to advocating on issues for the ostomy community, your voice matters! By telling your story, legislators and policy-makers hear how their constituents are affected. These personal stories are more memorable than facts, so they are indispensable in advocacy efforts.

Based off my interactions with the ostomy community, I can almost guarantee most of us are willing to go out of our way to provide support to one another. Furthermore, I believe most ostomates feel a sense of purpose and fulfillment by helping one another. We are strong and resilient beings who have so many stories and experiences to pass on that could deeply encourage and uplift another in the ostomy community, provide awareness to future ostomates and those struggling with their ostomy.

So, where are you in your healing journey?

I recently read a book called “You Can Heal Your Life” by Dolores Hay. She refers to starting the healing process by “cleaning your emotional closet.” You go in, you pick something up, you examine it, then you either store it away for later or you get rid of it. I love this analogy because it allows you to briefly examine the emotion and decide if now is the time to process and release it, or store it away for later when you feel strong enough to do so.

Are there parts of your ostomy story that have been stuffed away in your emotional closet? Are you ready to look at it so you too can get rid of it? Are you ready to impart some of those experiences that may help others and provide awareness? Maybe through advocacy you can find healing too.

My guess is that if you are an ostomate reading this, you have a story to tell. A personal journey someone else would love to hear, connect with, and find encouragement from. You may keep someone else from feeling alone in their ostomy journey. You just never know who needs to hear from you and your unique lived experience!

Editor’s note: If you are interested in getting more involved with UOAA and advocating for the ostomy community, join their Advocacy Network. Have an ostomy supply or care access issue? Your story matters. Contribute your story for national advocacy. Or you can share your ostomy story on UOAA’s Wall of Love!

We Are Living Proof Ostomies Are Lifesavers

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Resilience Story: The Wheelin’ Sportswoman

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By Ed Pfueller, UOAA Communications and Outreach Manager

Elizabeth Shank was paralyzed in an accident at the age of 20 and has had an ostomy for the past year. She continues to embrace the things she loves most.

Shank, 50, became an outdoors enthusiast during her life with a wheelchair. For almost a decade, she had the dream of obtaining a specialized trackchair to facilitate her access to fishing, hunting and camping locations.

Shank’s spirit of resilience and determination caught the attention of the Mahoning County (Ohio) Federation of Conservation Clubs and they helped rally several civic organizations to the cause of raising the $24,000 for the trackchair.

She shed tears of joy earlier this year when they surprised her with (not only a new trackchair) but a customized trailer with her name and the logo “The Wheelin’ Sportswoman” emblazoned on it. “I can now go over rocks and get more places,” Shank says.

Her love of skeet shooting and hunting has only grown over the years by working with the National Turkey Federation and people dedicated to getting disabled veterans and other people like her access to the outdoors.

Shank has lived a very active life with her husband of 23-years and a 14-year old son. In addition to sporting pursuits, she has enjoyed horseback riding and volunteering with local nonprofits.

In 2007-2009 she was twice awarded 1st runner-up in the Ms. Wheelchair Ohio competition.

She started a new job about two years ago and was enjoying good health. Then, unexpectedly she was hospitalized with a serious intestinal illness.

Shank was diagnosed with ulcerative colitis. Because of the location of her T-12 L-1 spinal cord injury, she did not experience the pain symptoms of the sickness.

In July and August of 2023 her hospitalizations became more frequent and life-disrupting. “That’s when it finally beat me. It got to the point when I could not have any happiness, I’d get sick and my gut would retaliate and I’d end up in the hospital again,” Shank remembers.

“To me the ostomy has been a lifesaver.”

In the last incident, she was taken by ambulance to the hospital because of pain and it was determined she had pancolitis of the whole colon. “They said there is nothing else we can do for you, you’ll need to go to the Cleveland Clinic.” Ileostomy surgery came next. “I was not reluctant because I knew it would help me,” she says.

“Funny thing is, once I had that ileostomy that next morning they came into take my blood pressure and it was back to normal after being very high.”

Despite having her colon removed on September 19, 2023, the next month she was back out in the field hunting. Things were turning around for her with the help of the ostomy.

“I could be who I was before, not always feel down, always worried and not wanting to do anything or have fun,” Shank says with fondness.

Shank did experience some typical issues such as sores however and reached out to a Facebook group for women with ileostomies.

There she met Angie Davenport an ostomy advocate and UOAA volunteer.

“When I was down Angie was very helpful and sent me messages of encouragement,” Shank says.

“Although we haven’t met in person yet, I feel she’s a very close friend just from our interactions and being able to give her encouragement concerning living with an ostomy,” Davenport says.

Davenport is the race director for the Trumbull County Run for Resilience Ostomy 5k in Niles, Ohio this year on Ostomy Awareness Day, Saturday, October 5 to benefit UOAA. She is also founder of the nonprofit Blessed with a Bag.

“I’m hoping to meet her at one of our local ostomy support group meetings or the October race. She’s definitely an Ostomy Warrior and an inspiration to other ostomates,” Davenport says.

“I’m looking forward to going around the track. I just want to go and help her out, with everything she helped me with,” Shank says of the Ostomy 5k event.

The message of Ostomy Awareness Day resonates with Shank.

“To me the ostomy has been a lifesaver,” she says.

“I’m open about things and was a mentor for spinal cord injuries so would help others with an ostomy as well.”

“If somebody did not quite know or was having a hard time I could tell them my story and let them know it will get a little easier, but it takes time,” Shank shares.

Shank says she is not shy about her ostomy. “l will let people know if it’s talkative or releases gas I will say ‘hey she’s a little talkative today,” she laughs.

“It’s part of me and has helped me live my life fuller then when I was sick with the ulcerative colitis.”

As for the rest of her Fall plans besides Ostomy Awareness Day? “You can find me in the woods,” she says. It’s hunting season after all.

 

To learn more or sign-up for the Run for Resilience Ostomy 5k visit ostomy.org/5k. To celebrate the resilience of the ostomy community donate to the Niles, Ohio Ostomy 5k and UOAA here. 

Panniculectomy with stoma re-site allows ostomate to thrive

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Colleen Reddington’s Ostomy Story

I’m interested in sharing my story because I know I am lucky to have a smart nurse practitioner for a sister who has advocated for me and helps me advocate for myself. When I was researching and looking for patients who had experienced the same non-cosmetic abdominal plastic surgery as I had, I was only able to find one person in the US. It has been so life-changing for me and I think others may benefit from it as well.

I was diagnosed with stage IIa rectal cancer in August 2019 after my baseline screening colonoscopy at 50. I wasn’t surprised; I knew something wasn’t quite right and hadn’t been for a while. That fall I underwent radiation treatment and oral chemotherapy in preparation for Low Anterior Resection surgery in January 2020.

My tumor was removed along with about 80% of my rectum and 13 lymph nodes. I had clear margins and a temporary ileostomy. I had a distinctly unfortunate ileostomy situation – I also live with epilepsy and I wasn’t immediately aware that the ileostomy was spitting out most of my epilepsy meds before they could metabolize into my system. As a result, I had six tonic clonic seizures in six weeks (usually I have one or two a year) and I was a bit of a mess. Add in severe skin breakdown due to seal problems and there was no way I could start cleanup chemo. We decided to reverse the ileostomy earlier than expected, after just 8 weeks, at the end of March 2020.

This has been nothing short of life-changing. Prior to this surgery, I had so much difficulty getting a good seal that I dared not even shower with the appliance on.

I started what was supposed to be eight rounds of chemo in May. After two rounds I discovered I had a rectovaginal fistula. I opted to push through and deal with it later. As it was I had yet to regain bowel control and was dealing with many of the issues of LARS (Low Anterior Resection Syndrome).

I made it through four rounds of chemo before I was hospitalized for severe constipation. We decided I’d gotten all the good I was going to get from chemo and made plans to have surgery for a temporary colostomy in preparation for surgery to repair the rectovaginal fistula. The colostomy diverts everything, giving that area a break and hopefully ensuring greater success in repairing the fistula. Because the colostomy helped and in light of the incredibly high rate of recurrence for rectovaginal fistulas, I decided to keep it and pass on the fistula repair surgery.

But an interesting thing happened – when I got the colostomy my quality of life really improved! I no longer needed to wear a diaper. As time went on, I was still dealing with severe skin breakdown and problems getting a good seal. I have been overweight all my life and the fact my belly was soft with dips and valleys didn’t help. Additionally, because of carrying so much weight in my belly my colorectal surgeon was limited in the length of gut he had to work with and the stoma profile he was able to create.

My sister Madonna is a nurse practitioner and she suggested that I consult with a plastic surgeon to work with my colorectal surgeon. She thought perhaps they could do a panniculectomy and stoma re-site to give me a better landscape to work with. My colorectal surgeon had not done this before.

To make it even more unique, my sister was the charge nurse on the Trauma/ICU Step-down Unit when my colorectal surgeon was doing his residency over 20 years ago. She already had a plastic surgeon in mind (one she had sent her patients to) so when I approached my colorectal surgeon with this possible solution to my seal/skin issues he trusted her judgment and agreed to it.

Unfortunately, due to the pandemic my surgery was delayed twice. I had it in March 2022, almost a year after I initiated the process.

This has been nothing short of life-changing. Prior to this surgery, I had so much difficulty getting a good seal that I dared not even shower with the appliance on. I used so many extra products and changed it out at least twice a week. Now, I use just the flange and it lasts all week – even through being in the pool five days a week, some days twice; through showers after every pool session.

I do have a parastomal hernia that my colorectal surgeon minimally repaired while re-siting but getting rid of the excess belly fat has even helped with managing that. I feel like I have my life back, without the anxiety, stress, and physical pain of a low-profile stoma and inadequate seal can cause.

Prior to this surgery, my stoma was placed almost parallel to my belly button which added to the trouble. The panniculectomy removed 10 pounds of belly fat and my bellybutton too. The surgery is not done for cosmetic reasons so some of the steps a plastic surgeon will take in doing a tummy tuck (like preserving the bellybutton) are not done in a panniculectomy.

Even with the seal/skin problems, I’ve always been grateful for my colostomy. But now I feel like my colostomy is really doing what it’s meant to do – helping me be in control and do whatever I want to do.

I have the option to reverse my colostomy at any time, but I won’t – it essentially takes care of the rectovaginal fistula (which remains stable since getting the colostomy) and also gives me bowel control, which I never regained after my temporary ileostomy reversal. I realize it wasn’t a long time but with only 20% of my rectum remaining, I’m not confident I ever would.

In addition to my water aerobics routine (I go M – F every morning and again in the afternoon three or four days for a total of 8 – 9 hours per week).  I now shower also multiple times a day. I couldn’t do that before – I was only able to shower twice a week (when I changed my appliance) and resorted to sponge baths the rest of the time. Before, in addition to the flange and pouch, I used stoma powder, paste, and strips. Now I just need the flange and pouch and it gets me through a week. I’m saving money and creating less garbage. I’m also saving time. I used to have to let my flange “cure” for an hour before moving; now it takes about five minutes and I’m up and about.

Even with the seal/skin problems, I’ve always been grateful for my colostomy. But now I feel like my colostomy is really doing what it’s meant to do – helping me be in control and do whatever I want to do.

 

Our Ostomy Story- Chris and Alexa

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A couple’s story of Crohn’s disease, caregiving, and family

Our battle with Crohn’s disease began back in the spring of 2006, one week after we started dating in high school. I was 16, and my now husband, Chris, was 17. We first met each other on the tennis court a few years before this- a love we still share to this day. Being just 16 and surrounded by a relatively healthy family, I had never experienced the wrath of any chronic illness, personally or by association. Chris had also been a healthy kid, which is why he and his parents found his worsening symptoms to be so alarming. As teenagers, we didn’t yet realize he had a serious condition that would need managed for the rest of our lives.

His first hospitalization happened the week after he asked me to be his girlfriend. I remember being very surprised and clueless as to why he was in the hospital. He and I practiced tennis together almost every single day, and I hadn’t noticed that anything was wrong. (To fully appreciate this journey, you have to realize that Chris does not complain about anything. Ever. He works really hard and refuses to make excuses- a trait that is both very admirable and very frustrating). Little did I know, Chris had been suffering from severe abdominal cramping, bloody diarrhea, frequent bowel movements, and weight loss for a few months, eventually landing himself a stay in the hospital. After undergoing a full GI work-up including colonoscopy and biopsies, Chris was diagnosed with ulcerative colitis (UC). He was discharged from the hospital the day before my junior prom, and he still put on a tux and attended with a smile on his face. He had joked that he was going to make it to the prom even if he had to bring his IV pole with him.

For the next year, Chris was treated with a mix of immunosuppressant medications, steroids, and blood transfusions without any improvement.

I felt so out of control. Being a patient is tough, and being a caregiver is tough- both in very different ways.

That following spring, he was referred by his local GI specialist to Cleveland Clinic for another assessment. Seeing how severe his disease was even after aggressive conservative treatment, Cleveland recommended he undergo extensive surgery by having a total proctocolectomy with ileoanal anastomosis and creation of a J-pouch with a temporary diverting ileostomy to definitively treat his UC. Chris was only 18 years old.

Chris had that first operation, which was successful, and was thankfully able to have his ileostomy reversed 3 months later. He traveled the long 4 hours back home from Cleveland and made it just in time for my high school graduation. He healed well after that second surgery and was able to begin schooling for diesel mechanics while I went to college. We got engaged before I started grad school, and he got a job working as a diesel mechanic. We then got married at 22 and 23 years old, excited to be finishing up with school and moving back home to start our adult lives. Unfortunately, for the next couple of years, he continued to have a slow progression of the same symptoms he was experiencing before his J-pouch surgery, meaning more severe abdominal cramping, bloody diarrhea, very frequent bowel movements, and weight loss. In addition to these symptoms, he developed a new complication: perianal fistulas. These symptoms persisted, leading to another scope and biopsies confirming a new diagnosis of Crohn’s disease.

Following this new diagnosis we were referred back to Cleveland Clinic for more treatment, which included multiple new medications, steroids, and transfusions. While Chris’s J-pouch surgery would have been somewhat curative for ulcerative colitis, it made it harder to effectively manage his Crohn’s. Chris continued to have this active disease in a surgically constructed reservoir (i.e. the J-pouch) making his condition, and the accompanying complications, very difficult to treat. No matter what medications he tried or how high the dosage, his health continued to deteriorate.

Over the next several years, Chris’s body went on to form a complex network of fistulas, which required multiple procedures for seton placement. He had tried hyperbaric oxygen therapy to help with the healing of his external fistulas and wounds. Unfortunately this treatment did not work.

Our kids have also been involved in everything concerning Chris’s ostomy, particularly in the beginning when it was new.

He experienced constant leakage and stool draining from multiple holes. This had become a nuisance for Chris. He also developed strictures at the inlet of the J- pouch which then resulted in endless ileoscopies for dilation to prevent obstruction. He had spontaneous bleeding due to the inflamed and ulcerated state of his intestines. There had been instances where Chris would start hemorrhaging a few hours after having a scheduled ileoscopy, causing us to rush to the ER in the middle of the night for an emergency ileoscopy to stop the bleeding. This happened on a couple of different occasions, leading to more hospital admissions and ICU stays for low hemoglobin and low blood pressure.

I started to panic with every procedure, wondering if everything would go routinely or if we would be surprised with unexpected problems.

By this time, we were traveling to Cleveland every 2-3 months for scopes and appointments, which became extremely mentally and physically exhausting for both of us. While I realize I can never begin to understand the excruciating pain Chris was experiencing, I was sort of in my own kind of emotional pain in seeing the person I love the most in this world suffer from such an awful disease. While Chris remained totally collected and level headed with each added layer of dread, I was having a hard time sitting back and watching it all happen, knowing there was absolutely nothing I could do but hold his hand in this never-ending nightmare.

I felt so out of control. Being a patient is tough, and being a caregiver is tough- both in very different ways. Luckily, our bond as a couple was already very strong, and we became more solid with each piece of bad news. It had gotten to the point where we would almost laugh about things, because what else was there to do? If we didn’t laugh, we’d cry, and we could not start that.

Something we were blessed with (other than our awesome marriage and a side of humor) was the love of an extremely supportive family. It was very difficult to navigate Chris’s condition as it was, but we had also been going through this while starting a family of our own and both working full time. Not to mention Chris was working a manual labor job while enduring all this misery.. can you imagine? My parents, brother, and sister-in-law stepped in to take care of us, our two small kids, and two pups whenever we needed them. They were available at a moment’s notice whether it was to watch our kids while we were in Cleveland or to help with things around the house that we just physically couldn’t get around to doing. It truly took a village to make sure everything and everyone was cared for, and we can’t even begin to express the love and appreciation we have for them. They always showed up, and having that safety net of support was so valuable, especially during that time in our lives.

Since Chris had tried and failed countless conservative treatments over the course of several years, it was then recommended he have surgery for a diverting ileostomy so that his J-pouch and fistulas could have a chance to rest and heal. Chris was not exactly thrilled with the thought of having an ileostomy, but he had run out of treatment options without any promising new therapies on the horizon. Knowing that an ileostomy was going to be a potential end result based on previous discussions with his care team, Chris was able to process his thoughts and emotions surrounding the upcoming surgery. Honestly, I think having the time to mentally prepare for such a surgery was a huge benefit in how we were all able to cope moving forward.

He had the surgery for a diverting ileostomy in January of 2020, just before the pandemic. We had hoped that he would improve with this surgical intervention, but his fistulas continued throughout that following year. He also developed a pyoderma, which is a large and painful ulcer, on his abdomen right beside his new stoma. As a result of this and the relentless fistulas and strictures, his doctors recommended he have another surgery, a major surgery, to hopefully improve his quality of life. So, one year after receiving his diverting ileostomy, Chris had an abdominoperineal resection (APR) operation. In this long, 8 hour surgery, he had his J-pouch, anus, and perianal fistulas removed. This surgery also meant that his ileostomy would be permanent without the option of ever reversing it. It would be a part of him for the rest of his life.

Our focus is on making something positive out of something that could easily seem like a burden or embarrassment.

It has now been 3 years since his APR surgery and permanent ileostomy, and Chris is healthier than ever (Shout out to the wonderful surgeons and specialists at Cleveland Clinic! We’re so very thankful for you). While the initial thought of living with an ostomy seemed daunting for Chris and for me, we have come to really appreciate everything it’s done for us. Cleveland visits are now just once a year instead of every 3 months, and Chris is only on one medication for therapeutic management. His ostomy is functioning very well and hasn’t given him any problems. Chris can change his ostomy appliance so quickly that it doesn’t even seem like an inconvenience.

Our kids have also been involved in everything concerning Chris’s ostomy, particularly in the beginning when it was new. They have grown up seeing him do bag changes and have loved helping him get all of his supplies ready, and we welcome their questions with age appropriate answers. They were too young to remember how sick their dad was, but we don’t dwell on that part.

Our focus is on making something positive out of something that could easily seem like a burden or embarrassment. They are now 9 and 6 years old and are not ashamed that their dad wears a bag on his belly. When our daughter was in second grade, she actually took it upon herself to read “Awesome Ollie” to her class so she could educate her friends on what an ostomy is (this is an AMAZING kid friendly book we had used to prepare our kids for Chris’s ostomy surgery).

We were very impressed with her confidence and maturity to be able to share this information with a class full of kids. It was all her idea.

We are so grateful for this ostomy and the freedom it has given us. It’s like we have a new lease on life! Chris’s positive attitude throughout this entire ordeal has been such a blessing as well. He has never let his disease dictate his life, and there is so much to be said about that. Chris will gladly talk about his experiences if it means helping someone that is struggling with a similar situation, but he is not one to draw attention to himself. He never brings up how tough or terrible that part of his past was. He is such a wonderful example for our two kids, and I am proud that they will grow up seeing how great life can be despite difficult and less than optimal situations. Having an ostomy or a spouse with an ostomy is certainly an adjustment, but it doesn’t have to be a negative thing. It really is all in your mindset- just ask Chris! Even though Crohn’s is a disease that will never go away, the ostomy has been a life saver.

This is our new normal, and we are so blessed we get to experience it.

Peggy: Her Short Bowel Syndrome Story

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Twenty-seven feet. That’s the length of a typical intestinal tract.
Twenty-seven inches…that’s all I have left of MY intestines.
But I didn’t lose more than 90 percent of my intestines all at once. My journey to a Short Bowel Syndrome (SBS) diagnosis is a long story, but one that I hope will help others feel less alone.

If you are living with Short Bowel Syndrome and rely on parenteral support, there’s an SBS Mentor available to connect with you. Click here to learn more.

My Story Begins
I was diagnosed with Crohn’s in my early teens. I was 23 when I had my first bowel resection and ileostomy. Over the next 35 years or so, a pattern developed: from Thanksgiving until Easter, I would become increasingly sick. For me that meant more Crohn’s-related pain, diarrhea, vomiting, and bleeding. I relied on my family, friends, and my doctors to help me manage through those tough times. I was able to graduate college Phi Beta Kappa, summa cum laude, earn a master’s degree in immunology, and become another of the many scientists in my family. But each year, I felt worse, and the symptoms lasted longer until, finally, I would need additional surgery to remove more diseased intestines. Before each operation, my surgeons would tell me they would need to remove just the minimum amount so I would not develop “Short Bowel Syndrome” or “SBS”. I didn’t understand their concerns. I kept thinking, “If they can remove all the bad parts and I end up with SBS, what’s the big deal? I’m already living with all these intestinal problems; it couldn’t be worse.” Or could it??

It got to the point where surgery was just buying me time. And it wasn’t quality time. I can’t even count how often my husband got up in the middle of the night to take me to the ER, and the hours he spent there with me. I had to stop working and go on disability. Added to the pain, diarrhea, and vomiting were more frequent bowel obstructions and fistulas. In my case, the fistulas could not be controlled or repaired. I needed major surgery to remove all the bits and pieces of reconnected intestines that were kinked, strictured and sticking, and patch up the areas where the fistulas had formed.

Major Surgery and an SBS Diagnosis
I had that surgery in August 2013 and had never been more terrified. A few days later, I was moved from the ICU to the “progressive care unit.” The image is still burned in my memory, my husband standing next to me. My surgeon stood in front of me and said, “You definitely have Short Bowel Syndrome now.” He gestured—held his hands in front of himself a bit more than hip-width apart. I thought he was just making a random gesture. “68 centimeters,” he said. That came to a little more than two feet.

I understood the part about my intestines being “shorter” but I didn’t yet understand that there was more to my SBS than just the length of my remaining intestines. I also had reduced function of my remaining intestines, meaning I wasn’t able to absorb enough nutrients from food and drink and needed to depend on parenteral support to maintain my health. This is sometimes referred to as SBS with intestinal failure, or “SBS-IF”.

I was not at all prepared for life with SBS. I was now receiving parenteral support (PS) in the form of two liters of IV hydration twice a week with magnesium and anti-diarrheal drugs. I was experiencing life-threatening electrolyte and mineral imbalances. Knowing I could die within hours if I couldn’t get adequately hydrated and get my electrolytes balanced was the most frightening thing to me. In fact, not two months after my surgery, I became so severely dehydrated that by the time I got to the ER my kidneys had shut down, and my potassium was so high I was on the verge of cardiac arrest. When I was able to sleep, I kept my fingers on my pulse. I was used to always looking for the nearest bathroom. Now, I was also looking for the nearest ER.

Partnering with my Doctor to Start SBS Treatment
There came a day when I finally cried with my doctor. He made some phone calls to colleagues to find out what they were doing to treat their SBS patients. On Christmas Eve, he called me excitedly to say he had learned that GATTEX® (teduglutide) for subcutaneous injection is a prescription medicine used in adults and children aged 1 year and older with Short Bowel Syndrome who need additional nutrition or fluids from intravenous (IV) feeding (parenteral support). We talked and, as part of that conversation, he encouraged me to read more about the possible benefits and serious risks, including making abnormal cells grow faster, polyps in the intestines, blockage of the bowel (intestines), swelling (inflammation) or blockage of your gallbladder or pancreas, and fluid overload.

Please continue reading for additional Important Safety Information.

After continuing to talk with my doctor about the possible side effects, I decided I would try it. A Takeda Patient Support nurse came to my home to show me how to prepare and measure my dose and give my GATTEX injection correctly. We practiced injecting on a dummy device. And then it was time to do the real thing. I remember how nervous I was, but what a feeling to be able to do this for myself!

Now, I take my GATTEX at night, right before bedtime. I rotate between four different injection sites on my body. I number the vials in my kit “1, 2, 3, 4” to remind me which spot to inject on which day. Under the supervision of my infusion nurse and my doctor, I was able to reduce my IV hydration from routinely getting two liters twice a week to regularly getting one liter once a week and, for a time, only receiving IV hydration on an as-needed basis. While this was true for me, not all people who take GATTEX will be able to reduce their weekly PS volume. I eventually had to start PS again. I do sometimes experience redness after injecting or notice a bloated feeling, and I have experienced some bowel blockages. I worked with my doctor to manage these side effects. He temporarily stopped GATTEX when I developed each bowel blockage and restarted GATTEX when they resolved. Again, this is my experience, and others may have different experiences with the medication.

I am glad I have a team of doctors I can trust, and who listen to me. I believe it’s important to educate yourself about treatment options, including the risks and benefits, and to communicate with your doctors when something isn’t working. My doctors continue to closely monitor me and adjust my medications, including all my electrolytes, minerals, and oral supplements. Overall, I am happy with my results.

I have learned many lessons through my life with serious illness, but I think one of the most important things I’ve learned is to be flexible. For me, this means being honest with myself and what I am physically capable of doing in a given day—to recognize that what I can do today might be different from what I could to do the day before. Nowadays, I try not to push myself beyond my limits.

And there’s one more thing I’m doing for myself: I’m sharing my experiences with others. For so long, I was not involved with the Short Bowel Syndrome community. Friends and family are wonderful, but I think it’s important to find a network of people who have been through similar experiences. For me, the people who truly understand what I’ve been through have helped me come out from the shadows, and I am happy with who I am.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about GATTEX? GATTEX may cause serious side effects, including:

Making abnormal cells grow faster

GATTEX can make abnormal cells that are already in your body grow faster. There is an increased risk that abnormal cells could become cancer. If you get cancer of the bowel (intestines), liver, gallbladder or pancreas while using GATTEX, your healthcare provider should stop GATTEX. If you get other types of cancers, you and your healthcare provider should discuss the risks and benefits of using GATTEX.

Polyps in the intestines

Polyps are growths on the inside of the intestines. For adult patients, your healthcare provider will have your colon and upper intestines checked for polyps within 6 months before starting GATTEX, and have any polyps removed. To keep using GATTEX, your healthcare provider should have your colon and upper intestines checked for polyps at the end of 1 year of using GATTEX.

For pediatric patients, your healthcare provider will check for blood in the stool within 6 months before starting GATTEX. If there is blood in the stool, your healthcare provider will check your colon and upper intestines for polyps, and have any polyps removed. To keep using GATTEX, your healthcare provider will check for blood in the stool every year during treatment of GATTEX. If there is blood in the stool, your healthcare provider will check your colon and upper intestines for polyps. The colon will be checked for polyps at the end of 1 year of using GATTEX.

For adult and pediatric patients, if no polyp is found at the end of 1 year, your healthcare provider should check you for polyps as needed and at least every 5 years. If any new polyps are found, your healthcare provider will have them removed and may recommend additional monitoring. If cancer is found in a polyp, your healthcare provider should stop GATTEX.

Blockage of the bowel (intestines)

A bowel blockage keeps food, fluids, and gas from moving through the bowels in the normal way. Tell your healthcare provider right away if you have any of these symptoms of a bowel or stomal blockage:

  • trouble having a bowel movement or passing gas
  • stomach area (abdomen) pain or swelling
  • nausea
  • vomiting
  • swelling and blockage of your stoma opening, if you have a stoma

If a blockage is found, your healthcare provider may temporarily stop GATTEX.

Swelling (inflammation) or blockage of your gallbladder or pancreas

Your healthcare provider will do tests to check your gallbladder and pancreas within 6 months before starting GATTEX and at least every 6 months while you are using GATTEX. Tell your healthcare provider right away if you get:

  • stomach area (abdomen) pain and tenderness
  • chills
  • fever
  • a change in your stools
  • nausea
  • vomiting
  • dark urine
  • yellowing of your skin or the whites of your eyes
Fluid overload

Your healthcare provider will check you for too much fluid in your body. Too much fluid in your body may lead to heart failure, especially if you have heart problems. Tell your healthcare provider if you get swelling in your feet and ankles, you gain weight very quickly (water weight), or you have trouble breathing.

The most common side effects of GATTEX include:

  • stomach area (abdomen) pain or swelling
  • nausea
  • cold or flu symptoms
  • skin reaction where the injection was given
  • vomiting
  • swelling of the hands or feet
  • allergic reactions

The side effects of GATTEX in children and adolescents are similar to those seen in adults. Tell your healthcare provider if you have any side effect that bothers you or that does not go away.

What should I tell my healthcare provider before using GATTEX?

Tell your healthcare provider about all your medical conditions, including if you or your child:

  • have cancer or a history of cancer
  • have or had polyps anywhere in your bowel (intestines) or rectum
  • have heart problems
  • have high blood pressure
  • have problems with your gallbladder, pancreas, kidneys
  • are pregnant or planning to become It is not known if GATTEX will harm your unborn baby. Tell your healthcare provider right away if you become pregnant while using GATTEX.
  • are breastfeeding or plan to It is not known if GATTEX passes into your breast milk. You should not breastfeed during treatment with GATTEX. Talk to your healthcare provider about the best way to feed your baby while using GATTEX.

Tell your healthcare providers about all the medicines you take, including prescription or over-the counter medicines, vitamins, and herbal supplements. Using GATTEX with certain other medicines may affect each other causing side effects. Your other healthcare providers may need to change the dose of any oral medicines (medicines taken by mouth) you take while using GATTEX. Tell the healthcare provider who gives you GATTEX if you will be taking a new oral medicine.

Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

What is GATTEX®?

GATTEX® (teduglutide) for subcutaneous injection is a prescription medicine used in adults and children 1 year of age and older with Short Bowel Syndrome (SBS) who need additional nutrition or fluids from intravenous (IV) feeding (parenteral support). It is not known if GATTEX is safe and effective in children under 1 year of age.

For additional safety information, click here for full Prescribing Information and Medication Guide, and discuss any questions with your doctor.

To learn more about Short Bowel Syndrome and a prescription treatment visit https://www.gattex.com/short-bowel-syndrome/

Editor’s Note: This educational article is from one of our digital sponsors, Takeda. Sponsor support along with donations from our readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

GATTEX and the GATTEX Logo are registered trademarks of Takeda Pharmaceuticals U.S.A., Inc. TAKEDA and the TAKEDA Logo are registered trademarks of Takeda Pharmaceutical Company Limited. ©2024 Takeda Pharmaceuticals U.S.A., Inc. All rights reserved. 1-877-TAKEDA-7 (1-877-825-3327). US-TED-1399v3.0 10/24

Embracing Life After Surgery 

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Before cancer came into my life, I was a very social person. My various professional ventures along with the diverse group of friends kept me on the go. Even though I dealt with anxiety it was mild enough that I was still a social butterfly.  

I was diagnosed with anal cancer on May 5, 2015, that’s Cinco de Mayo. We had the day planned, going to the groceries for Taco & Nacho Day. Watch mindless shows and spend the day together.  

Much like others like me, your caregiver becomes your world.

We were three years into our relationship, and this was not on our Bingo card of relationships… Or was it? That whole summer was spent in bed or on the couch sleeping. I couldn’t stand a lot of smells or people- so not much socializing.  

Much like others like me, your caregiver becomes your world. You are dependent on them for food, medical needs, and conversation. Chrisitan, my boyfriend, was all that and more. He was also my punching bag and took all my frustration and honestly, I don’t know where he put that energy.

It made our relationship stronger; it tested the relationship and us. He also helped me get back into the real world easier although it takes the caregiver longer to step out of his role. I don’t know if they ever leave completely.  

It took almost six months to decide or be convinced for the ostomy surgery. I had done hyperbaric chamber treatment, and we were hoping things would heal. We expected a miracle. My sphincter would not grow back.  

Diapers were not very convenient for work. I traveled quite a bit and changing on the go was a pain in the butt. Those changing tables in the bathroom don’t hold an adult! I finally picked a date for the surgery.  

My surgery was scheduled for April 1, 2016. If that date sounds familiar it’s because it’s April Fool’s Day. Yes, my surgery was a joke, and I wasn’t laughing. I didn’t have a mentor, buddy or a nurse to tell me what to do. My brain was in constant conflict between I don’t want anyone to see me, and I need to get back out in front of people. I wanted to act, public speak, or at best go shopping and try on clothes.

Go through the feelings and emotions. I denied that anything happened, got very angry, negotiated with my higher power, still dealt with a bit of depression, and I’ve accepted that this is my reality. It has allowed me to move forward faster.  

When I first started to go out in public, I would use surgical tape and bind my bag down. I was sure that if I taped it hard enough it would go away. I felt so self-conscious that I would wear shirts one size larger.

Then one day, in a support group, I heard about wraps. I had to look up this miracle device that would give me back my manly figure. As if they were security secrets that you had to find through a scavenger hunt.

I felt confident, strong, and back to me… Kinda. I felt like a piggy bank and that everyone was looking at my belly. Finally, Tommy the Ostomy and I had worked out the kinks, made peace, and became frenemies… Kinda.

Eight years later I am out more, I travel more, and still panic a bit. Tommy still manages to surprise me from time to time. Almost every day I put on my belly-bra to keep things tight and snug, and I watch my weight so things don’t pop out.

I still get panic attacks, I still think everyone is looking at me, and I still think I’ll wake up and It’ll be gone. Except I have more self-esteem, I share my story, and I look great in a tight shirt and jeans!

If I could share any words of wisdom if a new ostomate it would be go hunting online for patient stories and trusted information like this website. Find a support group and ask as many questions as pop in your head. Some things you’ll learn on your own but we’re here to help.

Another thing, go through the feelings and emotions. I denied that anything happened, got very angry, negotiated with my higher power, still dealt with a bit of depression, and I’ve accepted that this is my reality. It has allowed me to move forward faster.