Tag Archive for: Ostomy support

Finding Bladder Cancer Support Everywhere

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Younger women are not the typical bladder cancer and urostomy patients, but a variety of support and resources do exist to help you

By Liz Hiles

In August 2016, when I was diagnosed with bladder cancer, there was very little information about WOMEN and bladder cancer, let alone finding adequate support for anyone with bladder cancer.  Receiving a diagnosis that I hadn’t even heard of before, didn’t know the symptoms for, and had never heard of anyone I knew who had faced the diagnosis, my first thought at 40 years old was, “I’m too young to die.”

I really thought that I would surely die when I received my diagnosis, especially since I had been going to the Emergency Room periodically for years and was gaslit, ignored, and brushed off every single time. I was a deer in headlights and didn’t know what was coming or where to look for what I needed.

Going into a cancer diagnosis, many have cancer blinders on — meaning the only thing they can think about is cancer, treatment, and trying to survive. For 8 months to a year, I lived with those blinders on. I was too exhausted to think outside of any box or do any extra activities. When I went back to work in April 2017, it was all I could do for several months was make it through the work day and get home. Outside of that, I slept deeply.

While I was waiting for surgery, I tried finding a bladder cancer support group near me. There was absolutely nothing. When I asked my urology oncology surgeon, his only suggestion was to “try Facebook.” Yes, there absolutely are lots of groups on Facebook. I’m always a bit wary of those, as they are not always run ethically and are never moderated by licensed therapists or social workers, so the information and support you get is not always accurate or appropriate. I proceeded with caution there. 

At some point during treatment, I found some support websites and even an online chat via website or app that I was able to utilize. All focused on cancer in some way. They were moderately helpful, but I didn’t feel a strong connection, inclusivity on multiple levels, and a deeper understanding of my experiences. After I struck out at my local Cancer Support Community location, I recalled my WOC nurse telling me about an ostomy group. I couldn’t remember the name or find the information she gave me, so I called her up. After a brief but extremely helpful conversation about several issues I was having, I had the name of my local UOAA Affiliated Support Group written down and sought them out. 

That’s really when the support factor clicked in for me. The first meeting I went to was a social one, at a local restaurant. We met for dinner. There was one gentleman who like me, was also a bladder cancer survivor with a urostomy. Everyone else had fecal diversions of various types. Still, I found more compassion, empathy, and understanding for everything I went through there than I did from any other source I had tried to date. 

Support is like putting together a salad and tossing it well. A salad is horrible with just lettuce – you need lots of other ingredients to make it delicious!

Since that time, I’ve expanded my support circles, finding the right mix of cancer, bladder cancer, young adult cancer, ostomy, and spoonie support. I have made connections via the internet, Zoom, and even in person at events like UOAA’s National Conference. My experiences have helped me through some of the most challenging times of the last 10 years.

When it comes to support, my advice to anyone facing a new diagnosis is always two-fold:

  1. Welcome support into your life. You will need it. 
  2. Try a plethora of different support venues: via social media, Zoom, or in-person. Try everything at least twice before making the decision of whether or not you will fit in with the group. 

No single group or organization will fit all of your resource or support needs. Support is like putting together a salad and tossing it well. A salad is horrible with just lettuce – you need lots of other ingredients to make it delicious!

Throughout the years, I have managed to come together with individuals and organizations like UOAA to build a wonderful support network for myself. Without support, I would not have made it this far. Without support, I would not have come into the various opportunities that I’ve been fortunate enough to experience and collaborate on. 

In January 2026, I had the opportunity to come together with the Tigerlily Foundation and fellow survivors, Dee Masters and Brittney Tellekampto to bring bladder cancer to the forefront of conversations in women’s health and bring more awareness to the disease beyond the stereotypical patient: old, white, chain-smoking, male. 

The organization chose to highlight the three of us various backgrounds and experiences. 

The three of us were flown into Nashville, TN, for a weekend retreat to film our personal bladder cancer stories and a panel discussion while getting to converse, support, and bond over being launched into a mutual club that no one ever wants to join: the cancer club. 

Support continues to help make my life complete. It drives me through the hard days and inspires me to pay acts of kindness forward. 

Dee Master is a woman of Indian descent living in the Knoxville, TN area, was diagnosed at 33 with a recurrence 4 years later. She has experienced multiple procedures, including numerous cystoscopies, undergone various treatments, and has managed to retain her bladder. 

Brittney Tellekamp was diagnosed  with Stage IV Metastatic Bladder Cancer at the age of 28 and underwent a radical cystectomy, full hysterectomy, lymphadenectomy, and received an ileal conduit (stoma). She is speaking out with TigerLilly about sexual health issues for young women with bladder cancer. 

One of the most common themes we noticed was the challenges we faced in finding support that fit our needs and how rare it was to find other young adult women in the bladder cancer realm – especially those willing to talk about their journeys. 

Finding support is a critical part of surviving treatment and succeeding in survivorship. Yet it is an area that is often overlooked or ignored by the clinical teams who treat cancer patients. 

On May 1, 2026, the Tigerlily Foundation launched its brand new bladder cancer awareness campaign with a new resource page going live on its website. Throughout May and June, more information will be shared, along with video releases of our stories and panel discussion. The organization also plans on concentrated social media posts in October in support of ostomy awareness as well. 

Support continues to help make my life complete. It drives me through the hard days and inspires me to pay acts of kindness forward. 

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Liz is now 50 years old. A lifelong Cincinnati resident, she works in a school system by day and in her free time, she spends it advocating for various health issues, including bladder cancer, young adult cancer and ostomies.  To connect with Liz, go to her Linktree.

Follow the Tigerlily Foundation on Facebook, Instagram, LinkedIn, TikTok, YouTube, and Bluesky to connect with this campaign as it rolls out. To To connect with Dee, find her on Instagram @mamadragon9.

Gratitude on High: An Ostomy Patient’s Journey of Faith, Community, and Black History

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By Tonya Kelly

As I drove down East Main Street in Reynoldsburg, Ohio, time stopped.

There it was my banner hanging proudly among so many incredible community members being honored for Black History Month. I pulled over, overwhelmed by emotion.

Tears flowed freely: tears of gratitude, tears of healing, tears of triumph. These last two years have been a journey I could have never imagined, and in that moment, all I could do was appreciate my new life.

To be back in my community, teaching, tutoring, doing what I love, surrounded by love, support, and blessings this moment means everything.

There were moments on this new journey, when my body felt fragile, when uncertainty felt louder than hope. But my faith carried me. Living life as an ostomy(ileostomy) patient has reshaped my understanding of strength, resilience, and purpose. My ostomy literally saved my life, but it also gave me a deeper calling: to live boldly, to serve openly, and to remind others that life after ostomy surgery is not only possible it can be powerful, joyful, and fulfilling.

My community carried me. Organizations like UOAA and Color of Gastrointestinal Illnesses (COGI) reminded me that I was never alone. Through education, shared experiences, and unwavering support, I found strength in knowing that ostomy (ileostomy) patients are not defined by what we’ve lost but by how boldly we live afterward.

Seeing my banner represented on East Main Street alongside other nominated Reynoldsburg residents was deeply humbling. Black History Month is about honoring the past, but it is also about celebrating the living, breathing history we create every day through service, advocacy, and community.

 

My daddy would be so proud.

I do this for him.
I do this for my family.
I do this for my community.
I do this for every ostomy patient who needs to see someone living fully, loving deeply, and standing tall visible and unashamed.
I am Black history.
I am an ostomy patient.
I am grateful.

 

 

 

 

Thanks to Tonya for her leadership and passion for the ostomy community. Seeing the need for ostomy support and supplies in her community she founded Ostomy Warriors a Columbus, OH-based local support and free donation hub dedicated to bringing awareness, dignity, and practical help to ostomy patients and their families. For World Ostomy Day 2025 she organized an Ostomy Awareness recognition at the Ohio State House where she received an official proclamation.

Ostomy Warriors provide access to donated ostomy supplies for individuals experiencing financial hardship, insurance gaps, or unexpected medical transitions. Beyond supplies, the Ostomy Board offers education, peer support, and encouragement for those learning to navigate life as a new ostomy patient. Our mission is rooted in community care meeting people where they are, reducing stigma, and ensuring no one feels alone on their ostomy journey.

Contact:  www.facebook.com/ostomywarriors
614-512-6511,  Ostomywarriors25@gmail.com

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

 

 

Reach Out for Ostomy Support

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

By Ellyn Mantell

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

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

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

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

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

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

 

Ostomy Patients Enlighten Medical Staff

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By Ed Pfueller, UOAA

Amazing things can happen when ostomy patient advocates and clinicians come together.

Dr. Neilanjan Nandi, MD an IBD specialist at Hahnemann University Hospital in Philadelphia, trained in cities across the country and has long observed that “physicians were not comfortable with stoma care and troubleshooting as we should be.” “I learned early on the importance of knowing as much as possible by working with my patients.”

He decided to organize the hospital’s first “Hands On Ostomy Workshop” to empower his medical students, residents, and gastroenterology fellows with formal education.

To help bridge this gap with patients Hahnemann Outpatient WOC nurse Josephine Catanarzo suggested connecting the program with leaders of the Philadelphia’s UOAA Affiliated Support Group.

Stanley Cooper and the Philadelphia Ostomy Association, that is celebrating 70 years of service, and have a long history of talking to nursing students. They viewed this as another opportunity to bridge the gap between patients and those who serve them.

“The surgical staff and fellows got to hear directly from our engaging and dynamic patient panel about their experiences medically and personally with a stoma. This was the MOST profound aspect of the entire workshop. You can learn the medical and surgical nuances in textbooks. BUT you cannot understand the psychosocial impact unless you hear it directly and eloquently from our patients. Thank you to United Ostomy Associations of America patient advocates Sheldon, Stanley and the wonderful Stacey for taking he time to enlighten us!” Dr. Nandi says.

“We absolutely loved attending this,” Stanley says.  “For the Philadelphia Ostomy Association and UOAA it made Hahnemann aware that locally we have been in the Philadelphia area since 1949.  That we have a visiting service and that all our visitors are trained at a visitor’s training class that was developed by UOAA.  We had a lot of discussion on how today’s short hospital stays affect visits and a lot of times we can meet patients at their homes or at a restaurant for visits and that all helps in the patient’s rehabilitation.”

“Stanley was absolutely and overwhelmingly supportive of this initiative and brought in valuable educational resources courtesy of the UOAA for our surgical house staff. He was also able to provide us educational brochures to distribute to our patients as well,” Dr. Nandi says.

If you, your support group, or hospital is interested in some of UOAA’s educational guides you can view them here on ostomy.org or request printed materials, such as our New Ostomy Patient Guide. Our various Ostomy Patient Bill of Rights including practices for nurses to support their patients also help to educate and bridge the divides between patients and caregivers.

In addition to WOC nurses Josephine Catanarzo and Judi DiPerri  Hahnemann’s Colorectal surgeon David Stein was also invited to be a part of the workshop. Dr. Stein discussed what is involved in stoma site mapping and planning. The nurses shared clinical pearls on troubleshooting and application of ostomies.

“This was  truly was an amazing program!” Dr. Nandi says. “We learned about their individual stories and experiences with an ostomy and how they have continued to be true patient advocates within our greater community.”

One of Dr. Nandi’s patients Stacey Cavanaugh also provided her unique patient experience to the group.

“At our next event we are taking a suggestion from Anastasia, or Stacey, as she is affectionately known, and planning to have our docs wear an ostomy appliance for a day filled with fluid and to write about their experience and share it with the group. I think it will be more than novel and truly insightful for our young, and old! learners to gather. I also hope to invite other fellowship programs to attend our next ostomy workshop too.”

It’s inspiring what a few committed medical professionals and ostomy patients can do when they come together. Consider reaching out and bridging the gap where you live or work.

 

You can hear Dr. Nandi speak at this summer’s UOAA National Conference or connect with him on social media @fitwitmd  

To get involved with your local support group click here or follow our advocacy initiatives for other ways to make an impact.

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