The Reality of Life with an Ostomy: 9 Ostomates Share Insights, Victories, and Advice

, , , , , ,

Edited by Cecelia Bialas*

October is Ostomy Awareness Month, a time to share our unique stories, take comfort in the more common parts of ostomy life — the triumphs, challenges, and stoma noises along the way — and provide encouragement to those considering surgery. The ways by which we arrive at an ostomy are nearly as varied as there are characteristics and lifestyles of ostomates, and in spreading awareness we diversify the images that may come to mind.

We asked nine Coloplast Ostomy Ambassadors for a closer look at what it’s really like to live with an ostomy. Here they tell us about aspects of their lives that may surprise strangers, accomplishments made possible by their ostomies, new perspectives on life, what they wish others knew about living with an ostomy, and advice they would give someone facing surgery.

Ada — Ostomate for 4 years.

Axel — Ostomate for 9 months.

Cecelia — Ostomate for 7 years.

Chloe — Ostomate for 27 years.

Christopher — Ostomate for 8 years.

Crystal — Ostomate for 5 years.

Josh — Ostomate for 8 years.

Kaylaa’ — Ostomate for 4 years.

Taylie — Ostomate for 2.5 years. 

I Never Would’ve Guessed you Have an Ostomy

For many people, having an ostomy doesn’t limit what’s possible. In fact, it allows ostomates to dream of and pursue exciting, fulfilling hobbies and careers that may surprise others who don’t know they have an ostomy, challenging traditional stereotypes surrounding medical devices.

Ada: People are always shocked to learn that I have an ostomy and am in medical school! The truth is that I never would have been able to go to medical school without my ostomy. Having a disability and going into healthcare is challenging. Despite our job being to care for sick people, the same courtesy, grace, and understanding are often not given to those of us who work in healthcare. But I believe that disabled and chronically ill individuals are vital to healthcare.

Cecelia: I’m able to exercise way more often and at a higher intensity with an ostomy than I ever could have before surgery. I can go on miles-long horseback and bicycle rides, paddle across wide lakes, attend a weekly boxing class, and lift heavy at the gym regularly. I feel immensely grateful for my ostomy after every satisfying workout and adventure outside.

Christopher: I’m a union plumber, so my days can involve crawling into tight spaces, lifting heavy equipment, sweating my butt off, and working in some pretty uncomfortable positions. I also love skateboarding and staying active. Most people I meet have no idea I have an ostomy, and honestly that’s kind of the point. I’m not hiding it, but I’m also not introducing myself as “the guy with the bag.”

Josh: I am an Air Force officer and C-130H pilot, and in November 2019 I became the first Air Force pilot approved to return to flight status in a pressurized aircraft with an ostomy. Since returning to the airplane, I have operated my aircraft around the world without an ostomy-related incident or limitation affecting my ability to perform my duties.

Accomplishments Owed to an Ostomy

Living with an ostomy often comes with new energy and the freedom to pursue dreams put off in times of active illness or set new goals, leading many ostomates to accomplish what may not have been possible without surgery. The lived experience of having an ostomy has also empowered a number of ostomates to help others in similar situations, creating an ever-growing community of support.

Crystal: [I’m proud of] starting my ostomy Instagram page. Once I was in the right headspace after ostomy surgery, I really wanted to help others who were as lonely, scared, and lost as I was in the beginning. Seeing the comments and direct messages about how I helped others in their journey with my posts put a smile on my face and made me know this was what I was meant to do.

Cecelia: Years later, I’m still proud to have graduated from college with honors and landed a job in my field of study, remembering that for many years I was too sick to take online classes or even think about what I wanted to pursue as a career. My ostomy gave me the health and stability I needed to be a student.

Axel: I’m most proud of learning to trust my body again. After being sick for so long, I lost a lot of confidence in what my body was capable of. Getting my ostomy gave me the opportunity to slowly rebuild that relationship. Whether it was traveling alone, getting back outside, or simply saying yes to something without worrying about my illness, each experience gave me a little more confidence.

Ada: While on my pediatric GI rotation I was able to meet a patient who was facing ostomy surgery. I ended up speaking to the patient and their parents for hours about my ostomy experience, teaching them about supplies, showing them community resources, and answering any questions they had. The patient ended up getting an ostomy and told me that I had even inspired them to tell their friend about it. It was a moment I will never forget and why advocacy and awareness are so incredibly important to me.

New Perspectives and Lessons Learned

An ostomy can change more than daily routines. It may be hard to visualize at the beginning of your journey, but living with an ostomy often shapes how we see ourselves, our bodies, others, and the world around us.

Chloe: Having an ostomy my whole life, I have more gratitude and appreciation for the smaller things in life that others may take for granted. It has definitely shaped who I am today, and how I move through the world. It’s given me a strong sense of empathy and compassion toward others.

Kaylaa’: Going through so much with my health so early in life (I’m 23) and having many of my firsts in life with an ostomy has made me appreciate true happiness and a supportive community. I could not have gotten through what I’ve been through without my mom, my IBD/ostomy community, and fandom culture.

Josh: My experience taught me humility and gratitude. I have a deep appreciation for the medical professionals who cared for me and helped give me a second chance at life. My ostomy taught me how resilient the human body and the human spirit can be. I learned to actively participate in my own life, and some days require nothing more than putting one foot in front of the other.

Reality Check: Correcting Common Misconceptions

Misconceptions about ostomies are common, shaping perceptions and interactions before even meeting a person with an ostomy. Here our ambassadors share what they wish more people understood.

Axel: People think having an ostomy means living with limitations. For me it has meant freedom. Before my ostomy, so much of my life revolved around my illness and where the nearest bathroom was. Now I’m cycling across Europe, sleeping in a tent, climbing mountains, and doing things I once wasn’t sure my body would ever let me do again.

Chloe: People think having an ostomy is just for elderly people. In reality, anyone can have an ostomy at any age, like me — I’ve had mine since birth from a rare congenital illness. There’s a whole community of young people out there advocating for us. Chances are, you’ve probably already met someone with an ostomy without even realizing it!

Taylie: People think that having an ostomy means that you can’t have a good life. In reality, it means taking back your life and getting to do the things you enjoyed before getting sick. Before my surgery, I was essentially bound to staying home and stopped living my life. My ostomy provided me a second chance and allowed me to take back control. I now do anything and everything, living to the absolute fullest with a newfound appreciation for life!

You’ve Just Been Told You May Need an Ostomy . . .

Facing ostomy surgery can feel isolating and overwhelming, but experienced ostomates offer assurances of no regrets, emphasize the importance of asking questions and processing the emotions that arise throughout the ostomy journey, and want you to know that you’re not alone.

Crystal: It’s going to be an adjustment in the beginning. You need to give yourself time and grace as you learn the routine of bag changes and how to be comfortable in your new body. But I promise it will get easier! In time, bag changes, emptying your bags, etc. will just become a regular part of your routine and life. It will sometimes feel like they aren’t even there!

Kaylaa’: It’s okay to be scared, take your time, breathe, and ask all your questions, no matter how small they might seem. Even after it was determined my ostomy would relieve the pain I was in, before scheduling my surgery I asked my surgeon and wound care nurse about the clothes I’d be able to wear.

Taylie: Everything is going to be okay. While it may be scary at first, you will learn how to live with it and will find your confidence over time. For me, getting my ostomy was the best choice I ever made because it gave me a second chance to live, and it now allows me to do everything I enjoy.

Christopher: I would tell them that it’s okay to be scared, angry, confused, or completely against the idea. I felt all of those things. An ostomy might change your life, but it doesn’t mean you stop having a life. You’re still going to laugh, fall in love, work, travel, make stupid decisions, and have good days and bad days. It might take time to find your new normal, and that’s okay.

Opening up about life with an ostomy is a vulnerable act; it takes guts. With greater ostomy visibility comes a wider community of support that makes it easier to navigate the transition to life with an ostomy and to imagine all of the wonderful things that life holds after surgery.

 

Coloplast develops products and services that make life easier for people with intimate healthcare needs. Working closely with the people who use our products, we create solutions that are sensitive to their special needs. Our business includes ostomy care, continence care, advanced wound care, interventional urology, and voice & respiratory care.

*This blog was edited by and features contributions from Cecelia, a Coloplast product user who received compensation from Coloplast for sharing her experiences. Other contributors featured in the blog are also Coloplast product users who received compensation from Coloplast for sharing their experiences.

Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare professional about which product might be right for you

Follow Coloplast on Instagram, Facebook, and YouTube, or visit us online at https://www.coloplast.us/

Editor’s note: This blog is from a UOAA digital sponsor, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

A Community of Ostomy Awareness

, , , , , , , , ,

Ostomy Awareness Day and the Run for Resilience Ostomy 5k provide a chance for the community to come together.

We are one community that is stronger when working together to educate the public on life-changing and often life-saving ostomy and continent diversion surgeries. Join with UOAA and make a difference on Saturday, October 3, 2026 in celebration of Ostomy Awareness Day.

We hope you’ll join a community gathering at a Run for Resilience Ostomy 5k event around the country, but there are also many ways to make an impact from wherever you live! You can become a fundraiser and share your story, sign a petition, attend a National Support Group meeting, or share a photo/video story of you and your “ostomy community.”  Check out the Ostomy Awareness Day page for the latest ideas and community events.

Virtual events to celebrate Ostomy Awareness Day

UOAA National Support Group Meeting

Find Community this Ostomy Awareness Day! In honor of Ostomy Awareness Day, United Ostomy Associations of America (UOAA) invites everyone to join us for a special National Support Group Meeting featuring guest speakers Nate Hadlock, our 2026 UOAA Ostomy Awareness Day Champion and Kimberly Holiday-Coleman our 2024 Champion.

The meeting will be on Zoom Saturday, October 3, at 7pm ET. Register here to join or reach out to oa@ostomy.org for more info.

Together, we’ll celebrate the strength, resilience, and diverse experiences of people living with ostomies while creating an opportunity to learn, connect, and support one another.

WOCN Ostomy Education Day 

On Saturday, October 3, Ostomy Awareness Day, WOCN® Society is hosting a virtual Ostomy Education Day. Caregivers, medical professionals seeking CRE credits, and anyone in the public wanting to learn more about ostomy care are welcome to join this free event.

Support or Attend the Run for Resilience Ostomy 5k 

The Run for Resilience Ostomy 5k is a celebration of resilience and a gathering of ostomy awareness supporters no matter how far you can walk, run or roll. Virtual Ostomy 5k participants have gone the distance on a treadmill and by swimming, kayaking, riding stationary bicycles, and even horseback riding! Be sure to share your photos of whatever you do!

You can also donate to support others and help us reach our $25,000 fundraising goal!

The in-person Run for Resilience events are a mix of timed runs and fun runs as well as scenic walks and all are very family-friendly. Registration is still open and everyone is welcome to participate or simply gather and cheer on the resilience of the ostomy community! 

The events are held on scenic greenways and park locations around the country. See if there is an event near you or somewhere you’d like to travel to.

Events are October 3 in (AL, IL, OH, MI, OR) Sunday, October 4 (ID, NH) and Saturday, October 10 (SC).

Celebrate with our Run for Resilience Sponsors

Sponsors add to the fun and awareness atmosphere of our Ostomy 5k events nationwide. Check out new products and visit with company representatives at sponsor tables. Also check your race bags for special giveaways. 

Convatec is proud to be the Exclusive Diamond Sponsor of the 2026 UOAA Run for  Resilience Ostomy 5K.

We’re excited to walk, run, or roll with the ostomy community at in-person events across the United States on October 3, 4, and 10, 2026. Join an event near you or participate virtually from wherever you are. Register for the 2026 Run for Resilience Ostomy 5K.

We couldn’t just celebrate one Ostomy Awareness Day, we’d rather celebrate #Ostober!

Join us on Facebook and Instagram as we celebrate a whole month of ostomy care, community, and resilience throughout #Ostober.

Join more than 450,000 Convatec me+ members worldwide for free, personalized ostomy support, including access to certified ostomy nurses, product specialists, practical resources, and product samples. Call 1-800-422-8811 to enroll or enroll now!

Hollister and Coloplast are the Platinum sponsors of this year’s Run for Resilience Ostomy 5k.

As we approach Ostomy Awareness Day on October 3rd, Hollister Incorporated invites you to share your #OstomateVoices and to hear about your plans to celebrate the ostomy community! For ideas on how to get involved or get a stoma sticker, check out their website.

Show us Your Community! Share Your Photos/Video.

Take time to celebrate those who have joined you on your ostomy or continent diversion journey. Share photos or make a video with your ostomy friends, family, caregivers, support group, and clinicians. Share on social media and please tag and DM UOAA! Use the hashtags #OstomyDay2026 and #OstomyCommunity when you share your community. Not on social media? Reply to our Storyprompt below or email us at info@ostomy.org to join a community collage.


Advocate for the cause!

We are stronger together and our voices deserve to be heard. Please join UOAA and other national stakeholders in our advocacy efforts to keep ostomy and urological supplies out of competitive bidding. Check out our Action Center to sign a petition and  also learn more about the efforts to declare Ostomy Awareness Day in all 50 states!

To keep up-to-date on Advocacy efforts all year long, join UOAA’s Advocacy Network. To be connected to future events and resources and show our power in numbers, become a national member of UOAA.

Everyone with an ostomy is different and so is how you choose to celebrate or educate on this day. Check out all our suggestions on how to make an impact on this Ostomy Awareness Day and beyond. One thing is certain, we are One Community that is Stronger Together!

The Adventure of a Lifetime: Lessons from Cycling Across Europe After Ostomy Surgery

, , , , , , , , ,

By Axel Keller

This morning, I asked a woman to take my picture. Afterward, she looked at my bicycle, loaded with bags, and asked where I was headed. “Portugal,” I replied. We were standing in Copenhagen, Denmark, nearly 3,000 miles from my destination and almost 2,000 miles from where I had started 38 days earlier at the northern tip of Norway. Her jaw dropped. “Wow,” she said. “That’s the adventure of a lifetime.” I smiled, because little did she know, this wasn’t the adventure of a lifetime. That adventure had already happened. It began years earlier when I was diagnosed with ulcerative colitis and continued through countless hospital visits, medications, and uncertainty before culminating in the removal of my colon in December 2025 at just 22 years old.

The bike ride is only one part of this journey. Since surgery, I’ve learned more than I ever expected about living with an ostomy. Today, I’m partnering with Coloplast to answer a few questions about life with an ostomy and share some of the lessons I’ve picked up along the way.

What would surprise a new ostomate most about your life today with an ostomy?

If there’s one thing that would surprise a new ostomate, it’s how ordinary my ostomy has become. Before leaving for Europe, I imagined it would be the focus of every day. I worried about changing my bag in remote places, carrying enough supplies across multiple countries, finding clean places to do bag changes, and what would happen if something went wrong hundreds of miles from the nearest hospital.

Instead, my ostomy has become just another part of my routine. I change my bag, pack my supplies, and get back on my bike. Some mornings I wake up thinking about the weather, how many miles I want to ride, or where I’ll find food that evening. Most days, my ostomy isn’t the first thing on my mind anymore.

That’s probably the biggest surprise of this entire journey. Cycling across Europe isn’t possible because I ignore my ostomy, but rather because I’ve learned to live with it. What once felt overwhelming has simply become another part of preparing for the day, no different than filling my water bottles or checking the air in my tires.

How are you managing your ostomy as you cycle across Europe?

Before leaving for Europe, managing my ostomy was one of my biggest concerns. I spent months planning every detail because I wanted to eliminate as many unknowns as possible. Looking back now, it’s funny how much time I spent worrying about something that has become one of the easiest parts of my daily routine.

When it came to supplies, my philosophy was simple: always bring more than you think you’ll need. I packed about 25% more supplies than I expected to use throughout the trip because accidents happen, and it’s always better to have extras than to find yourself without what you need. I ordered everything well in advance of my flight to make sure it arrived before I left, and because I had four flights to reach the start of my journey in northern Norway, I carried all of my ostomy supplies with me in a separate medical bag. If my checked luggage was delayed or lost, I knew I would still have everything I needed.

Once I was on the bike, I never kept all of my supplies in one place. Most of them stay in one pannier, but I always keep a few complete bag changes spread throughout my other bags. That way, if one bag gets damaged, wet, or lost, I still have backup supplies within reach. It’s a simple habit that has given me a lot of peace of mind.

Bag changes have also become much easier than I expected. My Coloplast appliance typically lasts four to five days, so sometimes I’ll change it during a rest day at a hotel or cabin, just as I would at home. Other times, I’m deep in the mountains or camped in the middle of the woods. Before leaving on this trip, I practiced changing my bag while sitting on my bed, knowing that it would be similar to changing it inside my tent. By the time I found myself doing my first bag change on the road, it felt familiar because I had already practiced the process.

For disposal, I carry small dog waste bags with me. After a bag change, I seal everything inside one of those bags and store it in a separate place on my bike until I reach a proper trash bin. It’s a simple system, but it works well and helps me leave every campsite exactly as I found it.

The biggest lesson I’ve learned is that confidence comes from preparation. I didn’t eliminate every possible problem before leaving, I simply prepared well enough that when something unexpected happened, I knew I could handle it. That mindset has carried me through thousands of miles across Europe, and it’s one I’ll take with me long after this ride is over.

What has this journey taught you about yourself and life with an ostomy?

More than anything, this journey has changed the way I think about my ostomy. When I first had surgery, it felt like everything revolved around it. Every decision I made, every place I went, and everything I planned was influenced by this new part of my life. It was impossible not to think about because everything was still so new.

Now, it’s simply part of who I am.

There are days on this trip when I spend far more time thinking about the weather, where I’ll sleep that night, or how many miles I want to ride than I do about my ostomy. I still take care of it every day, but it no longer defines my day. That shift didn’t happen overnight. It happened through repetition, preparation, and proving to myself, one experience at a time, that I was capable of far more than I believed after surgery.

This journey has also changed the way I think about myself. Before leaving, I wanted to prove that I could ride across Europe with an ostomy. Somewhere along the way, I realized I didn’t have anything left to prove. My ostomy wasn’t holding me back anymore. It had simply become another part of my routine, just like packing my bike or setting up my tent.

The greatest lesson this trip has given me is that confidence doesn’t come from having all the answers. It comes from showing up, facing the unknown, and realizing you’re capable of handling more than you ever imagined. My ostomy may have changed the way I live, but it hasn’t changed the size of the life I’m able to live.

What would you tell someone who’s worried their ostomy will hold them back from traveling, exercising, or living the life they want?

If you’re reading this while recovering from surgery, wondering if you’ll ever travel, exercise, or chase the dreams you had before your ostomy, I’d first tell you that those feelings are completely normal. I remember lying in a hospital bed wondering many of the same things. At the time, riding a bicycle across Europe wasn’t even on my mind. I was simply hoping to feel healthy again.

Recovery takes time. There isn’t a moment where everything suddenly feels normal again. Instead, life slowly begins to open back up. The first walk turns into a hike. The first bike ride turns into a longer ride. Before you know it, you’re doing things that once felt impossible.

Don’t feel like you have to prove anything to anyone. Your goal doesn’t have to be riding across Europe. Maybe it’s walking around the block, going out to dinner without worrying about your ostomy, returning to your favorite hobby, or taking your first trip after surgery. Every milestone matters because every milestone reminds you that your life is moving forward.

If this journey has taught me anything, it’s that an ostomy doesn’t have to make your world smaller. It may change the way you prepare, the things you pack, or the routines you build, but it doesn’t have to change your dreams. Six months ago, I was recovering from surgery. Today, I’m writing this from a campsite in Denmark.

If I can leave you with one thought, it’s this: be patient with yourself. Give yourself time to heal, celebrate the small victories, and don’t let fear decide what your future looks like. You may be surprised by just how much life is still waiting for you on the other side of recovery.

 

Coloplast develops products and services that make life easier for people with intimate healthcare needs. Working closely with the people who use our products, we create solutions that are sensitive to their special needs. Our business includes ostomy care, continence care, advanced wound care, interventional urology, and voice & respiratory care.

Axel is a Coloplast product user who received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare professional about which product might be right for you.

Follow Coloplast on Instagram, Facebook, and YouTube, or visit us online at https://www.coloplast.us/

 

Editor’s note: This blog is from a UOAA digital sponsor, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

My Appendix Cancer and Ostomy Story

, , ,

Chances of survival from a rare cancer did not look good but that changed thanks to a complex surgery and ostomy, recovery came next.

By Donna Sklener

“Mother of All Surgeries” is the nickname given to the treatment for certain types appendix cancer. Never heard of it? I hadn’t either until it became the biggest challenge of my life. I was diagnosed with Low-Grade Appendiceal Mucinous Neoplasm (LAMN), a cancerous tumor in my appendix. As a further complication, it had escaped my appendix. When this happens, the mucinous cells that usually line the inside of the appendix begin relentlessly reproducing, attaching to the surfaces and organs in the abdomen and filling any open spaces in the abdominal cavity. This version of the disease is called Pseudomyxoma Peritonei, or PMP. The mass of mucinous tumors squeezes the organs, causes intestinal blockages and organ problems, and swells the abdomen. The low-grade version acts slowly and often goes undetected for years, or is found only incidentally when patients are being treated for other abdominal issues. Misdiagnosis is common, and most doctors, even oncologists, have never dealt with appendiceal cancer of any kind.

I first went to my primary care physician complaining of bloating and unexplained weight gain. Looking back, I think this disease was probably active for at least five years before I was bothered enough to approach my provider. My symptoms were relatively minor and I explained them away in my head as being due to reaching my 50’s, being diagnosed with an underactive thyroid, entering perimenopause, and having a desk job. But after I retired at 55 and began walking five miles a day with my husband and still gaining weight (I weighed and looked like I did when eight months pregnant), I decided to look deeper.

After bloodwork, an endoscopy, colonoscopy, CAT scan, and an aborted appendectomy, I was given a very scary diagnosis of a rare cancer I had never heard of. My first surgeon estimated I had the maximum abdominal tumor load according to the rating system used. He didn’t give me much hope of living past one year, and said three years was not likely. Fortunately, I did research and found that for my type of appendix cancer, it is critical to have an expert surgeon experienced in the massive surgery needed to treat the disease. I needed to travel to a hospital almost four hours from my home, but I am here to share my story three years later because of the expertise, surgical skill, and dedication of my surgeon, Dr. Patrick Wagner of Allegheny Health Network in Pittsburgh, Pennsylvania.

In May of 2023 I underwent a 12-hour surgery – officially referred to as Cytoreductive Surgery with Hyperthermic Intraperitoneal Chemotherapy, or CRS/HIPEC. The surgeon removed my appendix and the right side of my colon. And because the disease had escaped into my abdomen, he also had to scrape or burn off the mucinous cells from my organs. Any that were too affected and I could live without were removed, including my gall bladder, spleen, all reproductive organs, part of my bladder, part of my rectum, peritoneum, and omentum. For most people these would be separate surgeries and few would need all of them. I had them all at once! You can see how the nickname for this extensive and complex surgery came to be. After the cytoreductive part of the surgery, heated chemotherapy chemicals were poured into my open abdomen and circulated for 90 minutes. This HIPEC part of the surgery is done in hopes of killing any remaining mucinous cells that the surgeon could not see to remove.

I woke up with all kinds of new “attachments.” Two nerve blocks in my back, a nasogastric tube going up my nose and down my throat, an ART line in my neck, several IVs, two abdominal drains, a Foley catheter, and an ostomy pouch – because I now had an ileostomy. I was told my ileostomy was temporary, to allow the surgical sites in my colon and rectum to heal.

I was in the hospital for 11 days and lost 30 pounds, most of that during the surgery. The internal healing after CRS/HIPEC takes months. I had lost significant portions of my digestive system, and those remaining had been manipulated, stretched, cleaned, and put back in to a relatively empty abdomen. Everything had to recover, settle, and learn to do its job again, and that took time. I could eat only ice chips while in the ICU, then clear liquids, then soft food on the last couple days in the hospital. Due to the ileostomy, I was told to stick with a low residue, low fiber diet. One day, I’m sure by accident, I was given a ham and cheese sandwich for lunch. I knew enough not to eat that, but thought the mac & cheese that accompanied it was delicious. Until a few minutes later when it came back up. Turns out dairy was something my system was not yet ready for. Recovery involved a lot of trial and error, trying foods and seeing how my body responded. The debilitating cramps and pain (in addition to the expected pain of having an incision from my sternum to my pubic bone with 20+ staples) were scary. I often thought the cramps meant I would split open my anastomoses and have to be opened up again for repair. I also worried because I seemed to have high output into my ostomy bag. I had a large bag after surgery, and the nursing team at the hospital were great about taking care of that. Along with my catheter and drains, they had a lot to empty, measure, and dispose of. Those nurses are truly angels to recovering patients!

After three years of good health and still being “No Evidence of Disease,” I am able to see that my ileostomy was a remarkable aid to my healing and recovery.

A WOC nurse visited twice during my stay to teach me and my husband how to take care of the bag and make changes. It all seemed confusing and complicated, and I didn’t have the attention span (thanks to the pain and related pain management medications) to pay good attention. My husband was a saint and my rock. He took notes, practiced measuring and cutting the wafer, and never showed if he was grossed out. I was grossed out enough for both of us, and it was my body!

Discharge day came and I got set up with a home nursing visit a few days later to help change out the pouch. That nurse had to cut the wafer twice to get it to fit, applied the barrier ring to the wrong side of the wafer and had to start over, and then just a few hours after she left, I had a leak and we had to replace the bag again. My skin was already very sensitive, and the leak and additional change made it even worse. Over the next two months my husband got very good at doing bag changes. I don’t think I could have done them myself. I struggled with emptying the bag for a while because I still had to measure my output for my medical team (high volume worries), so I had to develop a routine of sitting on the edge of our tub to get the right angle to empty into the measuring pitcher, then dispose into the toilet, then clean up and put myself back together. One thing I learned to appreciate was the valve on my high-volume bags. That was much easier and cleaner to deal with than the bags with the open bottom that are rolled up or folded. I tried a few samples of those and just kept thinking, “Why can’t all bags for liquid output have a valve on them?”

I encourage anyone reading this to shed the fear and embarrassment you might be feeling, reach out for support, take advantage of resources that are available to help you

The biggest problem I had was that my stoma was placed right in the crease where I naturally bend at my waist. This led to so many barrier leaks and blow outs. Which then made me very reluctant to leave my house or have visitors. But my family and friends were so understanding and pretended not to hear all the gurgling and gas noises, or the smell that they assured me only I could detect. I am so grateful for their understanding and support.

Walking is really important to recovery from this surgery, so my husband and I started with very short distances – from the bed to the door of my hospital room at first – and worked up to three miles a day before my reversal surgery. I preferred using the high-volume bag, which could get heavy and pull when walking, so I was careful to empty it before we headed out. I tried a few belt options, but nothing ever worked well enough that I could say, “Oh, I forgot I had a bag” when walking around. Walks were uncomfortable and exhausting, but necessary.

Finally, after two months, reversal surgery was scheduled. We again traveled to the out-of-town hospital and as luck would have it, I had a pouch leak while sleeping the night before at a hotel. As we sleepily cleaned up and did a bag change, we laughed (ok, I cried a little too) and were thankful this would be the last one. I showed up at 5:30 am at the hospital with a shiny new pouch to take into surgery. After reversal, it was a much shorter stay at the hospital (four days – enough time to make sure my intestines woke up and were all ok) and the only attachment I had this time was another drain. This one came home with me, but was much easier to deal with than a bag and got removed two weeks later. After the reversal, I had to adjust my diet once again and could transition to more solid food and more fiber, while still experimenting to see what my recovering system could handle. It took several months to get back to eating as I was able to before my diagnosis.

Looking back, I did not approach having an ostomy with the right attitude. I resented that I had one, and felt pretty sorry for myself. I already felt very dependent on my husband as my caregiver during a very difficult surgical recovery, and the ostomy part of that made me feel even worse and magnified my concern that I was a burden to him (a feeling he vehemently denied, and which I am truly able to believe, now that it is in the rear-view window). I did very little research on ostomies, did not seek out helpful resources, and because it was temporary, resigned myself (and my husband) to just suffering through the experience until my reversal. This is not a good way to deal with an ostomy.

After three years of good health and still being “No Evidence of Disease,” I am able to see that my ileostomy was a remarkable aid to my healing and recovery. It gave my system time to heal and helped me get back to the things I enjoy doing, like walking every day, spending time with friends and family, gardening, and traveling the world.

With my disease, if only one mucinous cell remains, there is always a chance that I will have a recurrence and need another surgery – and perhaps another ileostomy or colostomy. I have since learned of many resources such as those from UOAA for ostomates. Next time I will insist on better home nursing support. I will call the help lines at the various supplier companies to explore pouch and attachment options to help with the leaks caused by my specific anatomy. I’ll use the wonderful resources at ostomy.org now that I know they exist. I can’t imagine how much better my whole experience would have been with a fellow ostomate to talk to and the support of this fantastic organization!

So, I encourage anyone reading this to shed the fear and embarrassment you might be feeling, reach out for support, take advantage of resources that are available to help you, and realize that although few people love their ostomy, we can appreciate what it does for us, and find the best way of living a full life with it. I wish everyone the very best experience possible.

 

 

Why does my ostomy pouch keep leaking?

, , , , , , , ,

If you’ve ever woken up at 2 a.m. to wet sheets, or lifted your shirt to confirm what you suspected, you know: an ostomy leak is rarely just a practical problem. There’s the mess and inconvenience, yes, but there’s also the emotional weight. A leaking pouch can be rattling and disheartening, capable of pulling you back to the hardest parts of adjusting to ostomy life.

Leaks are one of the most common fears among people with an ostomy. Research shows that 92% of ostomates worry about them, including those new to ostomy life, those who’ve lived with an ostomy for decades, and even those who follow their routine exactly as instructed.

The good news is that most leaks have a clear cause, and there are steps you can take to help reduce or prevent them altogether. Understanding why they happen is the first step.

What is happening when your ostomy bag leaks

Your baseplate, or barrier – the adhesive wafer that attaches your ostomy pouch to your skin – is what stands between output and your body. When it fails, stool or urine can find its way underneath and cause a leak.

Most leaks trace back to a handful of causes.

  • The barrier opening doesn’t fit your stoma. Your barrier should fit snugly around your stoma. If the opening is too large, your peristomal skin is exposed to output, compromising adhesion of the barrier and opening a path for leaks.
  • Your skin isn’t fully dry at application. Moisture is the enemy of adhesion. Even a small amount – from a shower, sweat, or cleaning the area around the stoma during a bag change – can prevent the seal from forming. Skin folds, the area around the belly button, and any place moisture collects are especially vulnerable.
  • Your peristomal skin is irritated. Healthy skin is the foundation of a secure seal. When it’s damaged, adhesion suffers. Irritation creates an uneven surface that can worsen with each change as the barrier pulls on already‑sensitive tissue.
  • Your stoma is flush, retracted, or sits in a skin fold. A stoma that protrudes well above the skin gives output a clear path into the pouch. But when a stoma is flush, retracted, or positioned near a fold or crease, output can spread sideways under the barrier instead. In these situations, the barrier may not be appropriately matched to your stoma’s profile.

What to do if leaks keep happening

When leaks continue despite your best efforts, it may mean that something in your current setup, routine, or anatomy needs a closer look.

  • Investigate the pattern. When do your leaks occur: morning, overnight, after meals, during activity? Where do they begin: along a specific edge, beneath the barrier? The timing and location of a leak can help narrow down whether it is related to fit, movement, moisture, or another issue
  • Check the opening of your barrier. Stomas shift, and what you traced when your stoma was new may not reflect its current size and shape. Use a stoma guide to re‑measure regularly, and cut the barrier opening to match your stoma’s exact size and shape.
  • Respect wear time – in both directions. Wearing a barrier too long can lead to breakdown, but changing too often can irritate your skin. Aim for a schedule that protects both your skin and your seal.
  • Reassess your barrier type. If your stoma is flush, retracted, or near a skin fold, a flat barrier may not provide the support you need. A convex barrier can provide gentle pressure that helps guide output into the ostomy bag instead of underneath the adhesive.
  • Consider adding accessories to your routine. The right supporting products can address the specific vulnerabilities that cause your barrier to fail – whether that’s uneven skin, moisture, or edges that lift.
    • Protective seals or barrier rings mold to the skin around your stoma, filling creases and uneven contours that can compromise barrier adhesion and allow output to undermine the seal.
    • Stoma powder helps absorb moisture on compromised or weeping peristomal skin, creating a dry surface for better adhesion.
    • Elastic barrier strips reinforce the outer edges of the barrier, where lifting most commonly begins.
  • See a WOC nurse. A WOC (Wound, Ostomy and Continence) nurse specializes in stoma care, and identifying the right fit, the right products, and the right technique is exactly what they’re trained to do. They can assess your stoma, evaluate changes in your abdominal contours, identify skin complications, observe your change routine, and recommend products for your specific anatomy and output. If you don’t currently have a WOC nurse, consult the WOCN Society’s online directory to find one in your area.

You don’t have to settle for ostomy leaks

While leaks are a relatable experience among ostomates, they aren’t something you have to accept as “just part of it.” Think of them as information, a signal that something in your fit, routine, or system isn’t quite right for your body right now.

With troubleshooting, small adjustments, and the right support, you can build a system that holds – one that lets you stop worrying about your pouch and puts your energy back into what matters most to you.

References

Jeppesen PB, Vestergaard M, Boisen EB, Ajslev TA. Impact of stoma leakage in everyday life: data from the Ostomy Life Study 2019. British Journal of Nursing [Internet]. 2022 Mar 24;31(6):S48–58

Coloplast develops products and services that make life easier for people with intimate healthcare needs. Working closely with the people who use our products, we create solutions that are sensitive to their special needs. Our business includes ostomy care, continence care, wound & tissue repair, interventional urology, and voice & respiratory care.

Follow Coloplast on Instagram, Facebook, and YouTube, or visit us online at https://www.coloplast.us/

 

Editor’s note: This blog is from a UOAA digital sponsor, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

I Found My Calling in Life, But It Came at the Price of My Colon

, , , , , ,

What started with mozzarella sticks, orange chicken, and a giant chocolate chip cookie from Applebee’s changed the course of my life.

I was 17 years old, touring colleges with my parents and preparing for what I thought would be the next exciting chapter of my life when everything changed.

It started with bloody stools and abdominal cramping. At first, my symptoms were dismissed as hemorrhoids. During that time, after taking antibiotics for cystic hormonal acne, I developed C. difficile. Even after treatment, my symptoms persisted for weeks, and two months later a colonoscopy finally provided the answer: ulcerative colitis.

I was a senior in high school.

Senior Prom (2010): Weeks after my first surgery, I attended prom with my ileostomy.

Instead of worrying about prom, graduation, and college, I found myself navigating doctor’s appointments, medications, hospitalizations, and the uncertainty that comes with living with a chronic invisible illness. Over the next year, ulcerative colitis slowly stole pieces of my life. I was exhausted, constantly sick, and missing out on experiences that most teenagers take for granted. I kept wondering, “How can anyone live a normal life with this disease?” As my illness progressed, so did my fears. I found myself wondering if I would need surgery, whether anyone would notice my ostomy, if anyone would ever love me, and if life would ever feel normal again. At 17 years old, I wasn’t just grieving my health – I was grieving the future I thought I was going to have.

Throughout my illness and recovery, my parents – especially my mom – never stopped believing I would get my life back, even during the moments when I couldn’t believe it myself.

Eventually, after a year-long ulcerative colitis flare, my gastroenterologist referred me to a colorectal surgeon. I expected another consultation, another conversation about treatment options. Instead, after examining me that day, he told me my colon was too diseased to save and that I needed surgery. Just one week later, I was in the operating room. I had spent more than a year fighting to keep my colon, hoping each new medication would be the one that finally worked. Accepting surgery didn’t feel like a choice; it felt like admitting defeat. But my body had reached a point where there were no other options. What I couldn’t see then was that surgery wasn’t the end of my life as I knew it. It was my chance to get it back.

At 18 years old, I underwent the first stage of a planned three-stage J-pouch (IPAA) surgery. I woke up with an ileostomy, suddenly trying to make sense of a body that looked and functioned differently than it had before.  I couldn’t imagine it then, but the surgery I had fought so hard to avoid would become the beginning of my recovery.

Something unexpected happened almost immediately. For the first time in over a year, I wasn’t running to the bathroom. The urgency and frequency were gone. Even though I had just undergone major surgery, I felt better than I had in months. It was only then that I realized how sick I had truly been.

High School Graduation (2010): Graduating with my ileostomy just two months after undergoing major surgery.

I won’t pretend it was easy. Living with an ostomy at 18 brought fears I never imagined I’d face. Like many young people facing ostomy surgery, I was scared. I worried about how I looked, what other people would think, and whether I would ever feel normal again. Going back to high school with an ostomy felt almost as intimidating as the surgery itself. I wasn’t worried about classes – I was worried about using the bathroom, whether my ostomy would make noise, whether anyone would notice my pouch, and whether I would ever feel like a normal teenager again.

One of the most meaningful moments during that time occurred when a nurse arranged for me to meet another young woman living with an ostomy. Until that moment, I thought my future had been taken from me. Watching her laugh, smile, and live her life changed everything. For the first time, I could picture a future for myself. What I didn’t realize then was that this single act would shape the rest of my life.

From that day forward, little by little, I made a decision: I wasn’t going to let my ostomy stop me from living my life.

I returned to high school. I graduated with my class. I went to my senior prom. I started college. I dated. I wore a bikini. I continued lifeguarding and teaching swim lessons, worked at a boutique shoe store, and even posed for a photoshoot.

None of those moments happened because I stopped being afraid. They happened because I refused to let fear make my decisions.

Looking back, I realized my ostomy wasn’t taking my life away – it was giving it back.

During my first hospitalization, something happened that I never expected. The nurses who cared for me inspired me to become a nurse. Their compassion, patience, and encouragement showed me what it meant to care for someone during one of the most vulnerable moments of life. They didn’t just help me recover, they changed the trajectory of my life. While I was still in the hospital, I knew I wanted to become a nurse. I also knew that one day I wanted to care for patients facing the same fears and life-changing surgeries that I was experiencing. That dream guided every step of my career. I earned my Bachelor of Science in Nursing (BSN), became a Registered Nurse (RN), later completed my Master of Science (MSN) in Nursing as an Adult-Gerontology Acute Care Nurse Practitioner (AGACNP-BC), and ultimately achieved board certification as an Advanced Practice Wound, Ostomy, and Continence Nurse (CWOCN-AP) – the very field that had once cared for me.

I know what it feels like to believe that no one else understands. And I know how powerful it is when someone says, “I’ve been where you are.”

I didn’t become a Wound, Ostomy, and Continence Nurse despite my experience as a patient. I became one because of it.

Today, I work in colorectal surgery, caring for patients with colon and rectal cancer and other complex colorectal conditions. Many are preparing for life with a permanent ostomy, and I have the privilege of helping them navigate that journey. There’s something uniquely powerful about caring for patients when you’ve been the patient yourself.

Bachelor of Science in Nursing (BSN) Graduation (2015): Earning my BSN and beginning the journey toward becoming the nurse I once needed.

Every day, I care for patients facing many of the same fears, decisions, and questions that once terrified me.  I sit beside patients preparing for ostomy surgery. I answer the questions they’re often afraid to ask.  Most importantly, I remind them that an ostomy is not the end of their story – it’s the beginning of a new chapter.

Because once upon a time, someone did that for me.

Because I’ve been there.

I know what it feels like to wake up after surgery and wonder what comes next.

I know what it feels like to look in the mirror and see a body that has changed.

I know what it feels like to believe that no one else understands.

And I know how powerful it is when someone says, “I’ve been where you are.”

More than a decade later, those fears didn’t end with me. I still hear the very same questions. With tears in their eyes, patients ask me the same questions I once asked myself:

Will anyone notice?

Will I ever feel normal again?

In that moment, I realize I’m not answering as someone who simply studied ostomy care.

I’m answering as someone who has lived it.

I often tell patients that while I would never have chosen ulcerative colitis, I wouldn’t trade the perspective it has given me. My surgeries didn’t restore the life I had before ulcerative colitis; they gave me a different life – one that still includes challenges, but also purpose, gratitude, and the privilege of helping others navigate the path I once walked.

Looking back, ulcerative colitis changed the trajectory of my life in ways I never could have imagined. If you had told my 18-year-old self that one day I would dedicate my career to caring for ostomy patients, I wouldn’t have believed you.

The disease that once felt like the greatest obstacle in my life ultimately led me to my purpose. It took me years to realize that while ulcerative colitis changed my body forever, it also revealed a calling I never knew I was meant to find. Every time I meet a frightened patient preparing for surgery, I think back to the young woman who met with me all those years ago.

Living Life with a J-pouch: Sixteen years later, traveling the world and proving that life after ulcerative colitis surgery can be full of adventure.

She probably had no idea how much that conversation would shape my life.  For years, I kept my story mostly private, sharing it only when I thought it might help a patient. Sixteen years later, I’m sharing it publicly for the same reason someone once shared theirs with me: because sometimes, all it takes is seeing someone who’s been there to believe you’ll be okay.

I hope that by sharing my story, I can be that person for someone else.

Because sometimes the thing that changes your life isn’t the surgery itself.

It’s meeting someone who’s already walked the path you’re about to begin.

It’s realizing you don’t have to face it alone.

It’s realizing your story isn’t ending.

It’s just beginning. ❤️

 

 

 

Kelly Mendello, MSN, AGACNP-BC, CWOCN-AP, OCN, is a Colorectal surgery Nurse Practitioner, Advanced Practice Wound, Ostomy, and Continence Nurse, former ostomy patient, and ostomy advocate. Drawing from both her personal journey and her experience caring for patients with ostomies, she is passionate about patient education, mentorship, and helping others navigate life with confidence after ostomy surgery.

Instagram: @withkellyxo
Email: kellymendellonp@gmail.com

Meet UOAA President Justus Anderson

, , , ,

New UOAA volunteer leader shares journey with ostomy, surgery and finding a community

I am honored and incredibly excited to step into this role as president and serve this vibrant community. I am dedicated to improving the lives of those living with ostomies and continence diversions as well as those who support them. I am deeply grateful for your trust and support. I have been involved with United Ostomy Associations of America (UOAA) since 2019 at the Affiliated Support Group level in positions as a Member, Treasurer, Secretary, Vice President, and President of the Pikes Peak Ostomy Association in Colorado Springs, Colorado. I am still involved in this group and invite you to join us.

Justus Anderson at home in Colorado with horse Festus and dog Aspen.

I grew up in Wyoming and entered the Air Force right after high school. I retired from the military in 2006 and began my ostomy journey in 2017 with a prostate cancer diagnosis. As a result of radiation treatments, I had multiple colo-urethral fistulas and became the proud owner of a loop ileostomy and a suprapubic catheter the day after Christmas, 2018. The intention was to have it reversed within six months and, as with many other new ostomates, I was released into the wild with limited knowledge and resources to help cope with my newfound condition.

I couldn’t stop the leaks and was terrified to leave the house. Fortunately, I have a loving, caring wife who convinced me to attend an ostomy group meeting. Their flyer was tucked in among the mind-numbing stack of papers in my complimentary, ostomy starter kit and hospital discharge folder. We attended our first meeting and realized that it was full of generous, upbeat, helpful people eager to welcome me into their fold! That was the moment I began to heal. Realizing that I did not have to face this alone was a huge step in the trek to recovery! My life was not over; it was just different.

Along the way, I met doctors, marathon runners, airline pilots, hikers, campers and all manner of human beings living full lives with ostomies. It was inspiring, and in 2023, I attended my first UOAA National Conference in Houston. I met more wonderful, caring people dedicated to helping others. That is when my UOAA journey began.

Justus representing UOAA at WOCNext with, left, UOAA Advocacy Manager Jeanine Gleba and center, Speaker Siri Lindley a World champion triathelete, author, coach, and horse rescue founder.

After four and a half years of major and minor surgeries, procedures, and COVID, I managed to have my ileostomy taken down in 2023. I get to keep my suprapubic catheter indefinitely. For those who have had these procedures, you know that that may not end the journey. This experience gave me a deep appreciation for the UOAA and the dedication of its membership. I could not have done it without my local support group and UOAA friends! I am still heavily involved in my local support group, and as you can see, I am now heavily involved in UOAA.

As President, I will work to give back to the organization that has supported me throughout my ostomy experience by strengthening member engagement, expanding outreach to ALL ostomates, and advancing programs that improve quality of life for our members and their caretakers. I will listen closely, communicate openly, and bring people together to turn good ideas into meaningful action. Please continue to share your ideas, concerns, and hopes for our future. I am here to serve you.

The Architecture of Caregiving: Holding the Line When the Current Is Deep

, , , , , , , ,

By Amy Shulfer, RN, MSN, CWON

When medical professionals think about healthcare, our minds naturally drift to the clinical milestones: the successful surgeries, the mastered appliance changes, the stable lab results, and the healing margins of a physical wound. Since 2003, I have spent over two decades navigating these exact clinical spaces as a certified Wound and Ostomy nurse. I know the rhythm of the hospital floor, the precision of a dressing change, and the vital importance of proper patient education.

But there is an entire world of caregiving that happens outside the clean boundaries of a hospital room. It is the invisible architecture of care—the emotional, mental, and spiritual infrastructure required to support a loved one through a chronic diagnosis, a new ostomy, or a long-term illness.

And it is a world I know intimately, not just as a nurse, but as a daughter.

For years, my family lived in the relentless “current” of illness. I navigated my own journey with ulcerative colitis, watched my mother courageously battle multiple sclerosis, and stood beside my father through his own significant health crises, including his journey with an ostomy. In that quiet, heavy space of family caregiving, the clinical boundaries blurred. I wasn’t just checking vitals or ordering supplies; I was holding the hand of the people who raised me, watching the roles reverse, and wondering how to keep from drowning in the exhaustion.

The Myth of the “Perfect Caregiver”

If you are currently caring for a spouse, a parent, or a child navigating an intestinal or urinary diversion, you likely know the weight of the phrase, “I’m fine.”

Caregivers are notorious for wearing a mask of absolute strength. We believe that to be a good caregiver, we must be unbreakable. We tell ourselves that our exhaustion is a sign of failure, that our moments of frustration mean we aren’t loving enough, and that asking for help is an admission of defeat.

But human structural integrity isn’t built to hold up a house alone during a storm.

In my years at both the professional bedside and the personal bedside, I have learned that the emotional toll of caregiving is often heavier than the physical labor. It is the constant undercurrent of anticipatory grief, the anxiety of the unknown, and the profound isolation of feeling like no one truly understands the day-to-day reality of your home.

When my family’s health trials were at their heaviest, I had to completely re-evaluate what it meant to love and serve through hardship. I had to learn that real love isn’t defined by the easy things—the laughter, the vacations, or the quiet moments of comfort.

Here is an excerpt from my memoir, Carried Through, where I had to put words to this exact breaking point:

“I never imagined that faith and suffering would be so intertwined. When I was younger, I thought faith meant believing that everything would turn out okay, that prayers for healing would be answered, that pain would be temporary, and that miracles would come if I just believed hard enough. But life reshapes faith, especially when sickness, caregiving, and loss become part of your daily reality.

I have lived with chronic illness. I have watched my parents battle diseases. I have lost dear friends far too soon. I have sat beside a dying patient, feeling the mystery of a soul departing from its earthly body… We think love is the easy things: the laughter, the vacations, the way someone holds your hand in a crowded room. But real love is steadier than that. Real love shows up with steady hands on the hardest days.”

Finding Your Anchor in the Storm

If you are a caregiver reading this today and your hands feel anything but steady, please hear me: You do not have to swim alone. Loving someone who is suffering is a sacred calling, but it requires a community to sustain it.

To help anchor your heart when the current feels too deep, I want to share three practical, grounding truths that saved me during my family’s darkest valleys:

  1. Give Up the Control, Keep the Faith

Much of a caregiver’s anxiety comes from trying to control outcomes we cannot touch. We cannot force a wound to heal faster, and we cannot predict every complication. Realizing that you are not the grand architect of the universe is not a failure, it is a liberation. It allows you to focus strictly on the next hour, the next step, and the next breath, trusting that there is a steady presence holding the rest together.

  1. Embrace the “Breath Prayer”

When you are sitting in a sterile hospital waiting room or dealing with a difficult appliance leak at 2:00 AM, a long, elegant prayer feels completely out of reach. In those moments, give yourself permission to use “breath prayers”, short, simple cries of the heart that can be spoken in a single inhale and exhale.

(Inhale) Lord, give me Your strength… (Exhale) For this next step.

(Inhale) I cannot hold this… (Exhale) But You can.

  1. Lean on Specialized Advocacy

You cannot be the medical expert, the emotional rock, and the logistical coordinator all at once without resources. Organizations like the United Ostomy Associations of America (UOAA) exist precisely because this journey requires structural support. Whether it is finding a local support group, accessing educational material that takes the mystery out of a new stoma, or connecting with an ostomy outpatient clinic, utilizing these tools is an act of strength, not weakness.

You Are Still Being Carried

To the caregiver standing at the bedside today, the one navigating the heavy silence of a changing diagnosis, or the one balancing your own health battles while supporting someone else: your identity is not defined by the illness in the room. You are more than a patient, and you are more than a caregiver.

Even on the days when you feel creased, folded, and entirely spent, your service is seen. Your quiet resilience is creating a legacy of love that endures far beyond the clinical challenges. Take a breath, allow yourself to be human, and remember that even when you don’t have the strength to carry the weight, you are being safely carried through.

 

Amy Shulfer, RN, MSN, CWON, is the author of the new memoir, Carried Through: A Daughter’s Reflections of Love, Loss, and the God Who Carries Us, available on Amazon. She is also the creator of the YouTube channel “Ostomy Care with Angel Face Amy,” where she shares practical advice, clinical advocacy, and heartfelt encouragement for the IBD and ostomy community.

SUPPORTED BY FAMILY AND FAITH: MISA’S SHORT BOWEL SYNDROME STORY

, , , , ,

My name is Misa and I’m a busy woman who has never had time to be sick. Not when I was young and not today. I credit my strength, my core energy, and my resilience to my family! My mother and father, who immigrated to the United States from Libya, are both strong-minded and strong-willed individuals who always told us to keep trying and never give up. Little did I know how important this lesson was going to be when I was facing my numerous health challenges.

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.

A Mother’s Strength: Searching for Answers

When I was about 13 years old, I got extremely sick with what seemed like non-stop diarrhea. I spent hours on the couch, hunched over and I was in constant pain. Doctors told my mother that my illness was psychological, but she believed me that this was serious. Eventually, she found a gastroenterologist who took the time to find out that there was something physically wrong with me. That’s when my doctor diagnosed me with Crohn’s disease and colitis. From that day of diagnosis, nothing in my life followed a usual pattern.

From ages 14 to 18, my illness and symptoms were treated with multiple drugs and treatments, but none seemed to work for me. I would experience side effects, so my doctor would adjust my dosage, but the symptoms of my Crohn’s and colitis just came back. I was one of those cases that the doctors said didn’t respond to typical treatments. As a teenager, I went through depression and stages of asking, “Why is this happening to me?” “Why is God punishing me?” “What did I do?”

At age 18, my Crohn’s and colitis had gotten so bad that I weighed just 95 pounds and was sick all the time. I hated my life and all the pain I experienced every day. I just wanted the pain to stop. My mother never gave up looking for answers. She sought the advice of relatives outside of the United States about options, and ended up flying with me to London, where a wonderful doctor performed a surgery to alleviate bowel narrowing in my colon and small intestines. This was the first of more than a dozen Crohn’s-related surgeries that I would endure. We spent three weeks in London, then traveled home. I was sore but healing.

Even after that first surgery, we still couldn’t manage my Crohn’s disease and colitis. Two years later, we were referred to a wonderful doctor, who would later perform the surgery that gave me my permanent ileostomy. To me, my ileostomy felt like “freedom”. I was looking forward to living without pain, even if it would only last for a short time. And, as it turned out, that’s all it lasted for.

A New Diagnosis: Short Bowel Syndrome

The next several years could best be characterized by a sense of change. Every two years or so, my Crohn’s disease would flare up, not respond to any treatment, and leave me back in surgery, needing another bowel resection. That didn’t stop my drive to live and succeed. I wanted to travel, so I did! I enjoyed being on the move and seeing the change in scenery. It wasn’t just my health; it was my personal life as well. With my medical history, I never thought to get married or have kids. I felt I couldn’t burden anyone with all my baggage.

After I had my ileostomy surgery in 1995, I was volunteering on a friend’s horse farm, and I met my husband. We dated for five years before marrying when I was 31 years old. Due to the surgeries I had already endured, a child was not in my thought process. At the age of 32, I had my daughter. At age 40, I gave birth to my son. Both of my children were gifts! Even with my multiple surgeries and extremely shortened intestines, my body was functioning and surviving, and I was living life.

It wasn’t until I was 43 that a surgery left me in intensive care with a fistula in my abdominal wall. My doctors officially diagnosed me with short bowel syndrome (SBS), because I was unable to absorb enough nutrients from the food I ate and needed to be put on parenteral support (PS), also known as parenteral nutrition. I remained on PS every day for nearly two years.

All my surgeries left me with no large intestine, no rectum, and less than 90 centimeters of small bowel. When my surgeon told me all of this after the surgery, I knew I would have to rely on the strength that I’ve inherited from my mother and father to keep going.

At this point, my body was dumping everything into my ostomy bag, and I was malnourished. My freedom and my energy were gone. I couldn’t take care of my animals or my family. This was a very dark time for me.

I was hospitalized multiple times over the next several months. I only weighed 88 pounds. My body didn’t have the ability to absorb any nutrients. Not knowing what to do, I turned to my faith and I prayed. And then I started to fight even harder. I had to be tough like my mom had been when she fought to get me properly diagnosed.

Learning About An SBS Treatment

When my surgeon told me about a prescription medication, GATTEX® (teduglutide) for subcutaneous injection, that is approved for people aged one and older with SBS who need additional nutrition or fluids from intravenous (IV) feeding (parenteral support), I was intrigued, but leery. It is not known if GATTEX is safe and effective in children under one year of age.

My doctor and I discussed how GATTEX might help and she also told me about the possible serious side effects, including making abnormal cells grow faster, polyps in the intestines, blockage of the bowel (intestines), swelling (inflammation) or blockage of the gallbladder or pancreas, and fluid overload. After doing some reading about the medication, I decided I wasn’t ready to try it.

Please continue reading for additional Important Safety Information.

Soon after, my doctor heard there was an informational program about GATTEX, and she encouraged me to attend. While at the program, I looked around the room and saw people who were a lot like me. As we talked, and we shared our stories, I was in disbelief and awe at the same time. We all brought our own experiences, but we found that we had many of the same thoughts, fears, and worries. We connected in a way that I had never connected with anyone before.

After learning more about GATTEX and speaking with my doctor, I decided that it was right for me to start treatment.

Prior to starting GATTEX, I was receiving two to three liters of IV fluids with magnesium and potassium, seven days per week. Over time, my doctors have worked with me to get the amount of IV fluids, potassium, and magnesium I infuse just right. I think we’ve found a good balance now. Currently, I am able to take and absorb two potassium tablets orally daily. I infuse a half liter of sodium chloride three times a week and a half a liter of sodium chloride with magnesium two times a week. But my healthcare team and I are always monitoring my condition, and each person’s experience and treatment may be different than mine. It has taken a few years to get to where I am now with my infusions, but my doctors and I are very pleased with my results while taking GATTEX. Even still, I have experienced injection site reactions, such as redness around the injection site, bowel blockages, and on occasion, nausea. I worked with my doctor to manage these reactions. This is just my experience; everyone reacts differently to medicine.

Sharing My Story to Encourage Perseverance

My doctors are wonderful. I have a great rapport with each of them. I think the strength of that solid relationship is that we communicate really well. They don’t dictate to me what is going to happen. We talk openly, and they consider my opinion. We work together to figure out what works for me. It’s very one-to-one communication. I feel like I’m an active participant in my healthcare. I’ve lived with this illness for a very long time, so I know a thing or two about it. And my doctors respect that.

While many people could see these life experiences and dwell on the negatives, I choose to live each day experiencing new things, seeing new places, and meeting new people. I travel, work in my garden, and raise my dogs. I believe it is a privilege to share my personal experiences with illness, surgeries, and treatments with the hope that they will give others the strength to keep pushing for their own answers.

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 breastfeed. 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.

©2026 Takeda Pharmaceuticals U.S.A., Inc. 1-877-TAKEDA-7 (1-877-825-3327). All rights reserved. TAKEDA and the TAKEDA logo are trademarks or registered trademarks of Takeda Pharmaceutical Company Limited. GATTEX and the GATTEX logo are registered trademarks of Takeda Pharmaceuticals U.S.A., Inc. US-TED-1743v1.0 06/26

 

Resilience Story: Brittany Jackamonis

, , , , , , ,

Health and wellness have always been a big part of my life’s journey. I grew up running track and cheerleading, and then found a new love in CrossFit in 2012, which really took fitness to another level for me. As a wife, mom, minister, and police officer, I was living out some of my healthiest and best years.

But life took a sudden turn in September 2022. Severe stomach pain dropped me to my knees. It was discovered that I had ulcerative colitis; a chronic inflammatory bowel disease that causes inflammation and ulcers in your colon and rectum. I was already at the level of what doctors refer to as a Mayo 3, most severe.

Life spiraled quickly: instant dramatic weight loss, six colonoscopies later, multiple hospital visits and stays, various CT scans, lengthy infusion sessions, infections throughout the colon, in and out of a restroom multiple times a day; my quality of life no longer existed. I suffered painfully, while still trying to show up for my family, career, and ministry.

Talks about an ostomy bag started very early into my diagnosis, but I just couldn’t wrap my mind around having a bag attached to my stomach. I endured pain and suffering but surgery eventually had to happen; life simply couldn’t carry on the way it was going for me.

Then came the ostomy in January 2026! And I can actually say this with pure excitement! Because although I had to have my entire colon removed and a piece of my small intestine (stoma) flipped to the outside of my stomach, my quality of life is back! My fitness is back! My health is back! I’m fully back for my family, my career, and ministry!

My ostomy gave me the option of restoring my health, and has shown me a new level of resilience. It doesn’t define who I am, but proves strength, perseverance, and empowerment!

Working in law enforcement with an ostomy is pretty unique. When I first returned to work after  two months off, I remember being excited and anxious. I was excited to be feeling so much better and returning to my Team, but anxious to see how wearing my gear around my waist would feel on my bag. I remember going to the shooting range for practice just to feel how different shooting positions and pulling from my holster felt. All has been extremely normal and well for me back on duty! It’s been 18 years in law enforcement, and I can still do everything the same!

I wanted a fun active way to bring those with ostomies together to be bold and build confidence.

I learned about UOAA by doing research online a few months after my surgery. I knew I wanted to do something big in the ostomy community but I didn’t want to reinvent the wheel. I found UOAA and the Ostomy 5Ks that take place around the Nation, and I was all in! I knew I had to bring this type of energy and awareness to South Carolina.”

I wanted a fun active way to bring those with ostomies together to be bold and build confidence. I noticed right away that many people with an ostomy were ashamed and lacked confidence. I knew it was time for a confidence boost! I also want a way for the community to show up to support and become more aware of what ostomy bags are and how much they truly give life back. I’m excited to host the Inaugural Run for Resilience Ostomy 5k in Columbia, SC on  Saturday, October 10th in celebration Ostomy Awareness Day at the beautiful Sesquicentennial State Park! 

I’m also happy to be back at my favorite place, Carolina CrossFit It is a breath of fresh air! I lift and move just fine. If we have burpees, wall walks, bar muscle ups (those movements that require you to have pressure near the stoma area) I know when and how to modify. I limit myself little to none when it comes to fitness. An ostomy bag doesn’t stop my CrossFit workouts. Put a barbell in my hand any day, and we are taking it for a nice spin!

My advice is (after being cleared from your doctor and discussing parastomal hernia risk), don’t limit yourself. Know what works for you, stay hydrated, secure your stoma and ostomy bag with a fitness wrap, and put in the work. You’re not immobile, you’re just uniquely you!

Every ostomate’s journey is different, but one thing is commonly shared: We are resilient!

 

Celebrate your resilience and participate in a Run for Resilience Ostomy 5k event near you or host your own Virtual Ostomy 5k event wherever you are. Donate in honor of Brittany’s resilience or learn more about her Ostomy 5k event in South Carolina!

Resilience Story: Denise Miller

, , , , ,

On Nov. 6, 2022 I was bike riding with my husband and started having pain on my right side. Dr. Goggle said it could be appendicitis. So, I went to the ER and found that it was not my appendix but that I had ovarian cancer. At the time, 55 years old, I thought I was in good health. I was shocked, depressed and scared to death having to deal with cancer. I went to the oncologist and was learned I was going to need a total hysterotomy and that there was a shadow on my large intestine but that she would not know what it was until the surgery.

There was the possibility that I would need a colostomy. Ok, I thought, now dealing with cancer and the possibility of an ostomy, I was more depressed and felt my life was over. How can I deal with an ostomy and cancer?

On December 27, 2022 I went in for my surgery and came out with an ostomy. Apparently, the cancer had wrapped itself around the large intestine and a large portion had to be removed. I was given a colostomy and a chance to leave a normal healthy life.

I was depressed though and thought how in the world can I go on with this? The cancer part was gone and I did not have to go through chemo but on medicine and three month check-ups with an oncologist for the next five years. But now I had to deal with an ostomy.

Shortly after I was home from the hospital, I met my guardian angel (The greatest ostomy nurse) Andrea Torok who taught me, encouraged me and helped me mentally get through so much dealing with an ostomy. I was told I could do what I did before and more. She and my husband Guy Miller got me through so much and I’m so grateful for them both.

Andrea encouraged me to start an ostomy support group in Ann Arbor, Michigan and I thought, what? Me? I have no clue how to do that?

I feel great running and so much healthier, with more energy than before.

United Ostomy Associations of America assisted me in starting an affiliated group and after two years we have about 20 people in the group.

I was also excited to feel better and started running again as I had before surgery. Once able to get back to running I was soon doing 5K races and winning my age group! I feel great running and so much healthier, with more energy than before. I wear a binder when running daily and lifting weights.

I also hike, bike and live life to the fullest. I for sure have my down days, but think that I am here, healthy and helping others any way that I can.

Last year I was thrilled to learn about the Run for Resilience Ostomy 5k that is celebrated by UOAA for National Ostomy Awareness Day.

I traveled to Cleveland, Ohio from Michigan for the event. I felt very inspired by all those that participated in the run/walk. People wearing their bags on the outside of their clothes, the shirts folks wore, and just feeling so comfortable about their ostomy. I felt very welcomed and free to wear my ostomy outside my clothes and not feel ashamed.

I was inspired to increase awareness of ostomies in Michigan so this year I’m organizing the first annual Run for Resilience Ostomy 5k in Ann Arbor on Saturday, October 3, 2026.

Many people have them but feel like cannot talk about it and that makes me sad.

As I have been fundraising for this event and the mission of UOAA, I have heard so many stories about people that have ostomies, know someone, or have had an ostomy reversed and want to be a part of increasing awareness.

I have realized that I am not alone in this and so many people in Michigan want to help and be a part of this. I also have a goal of getting the younger generation involved.

Ostomies do save lives and we can do what we want if we put our minds to it!

 

Celebrate your resilience and participate in a Run for Resilience Ostomy 5k event near you or host your own Virtual Ostomy 5k event wherever you are. Donate in honor of Denise’s resilience or learn more about her Ostomy 5k event in Michigan!

Kidney Stones and Ileostomies

, , , ,

By Joyce Moss, RN, MS, MNM, COCN, CWCN

Kidney stones develop when crystals anchor to plaque formations or crystalline deposits develop within the inner medullary collecting ducts of the kidneys. Research has shown that kidney stone formation is a known complication of inflammatory bowel diseases and the surgical procedures used to manage these conditions.

Ileostomy surgery significantly increases the risk of kidney stones primarily due to fluid and electrolyte losses. Patients with an ileostomy lose substantial amounts of fluid through their stoma, which can easily lead to dehydration. When dehydration occurs, urine becomes more concentrated, increasing the likelihood that stone-forming substances will crystallize.

Concentrated urine leads to supersaturation, meaning that minerals such as calcium, oxalate, and uric acid are present at levels high enough to form crystals. These crystals can attach to plaques in the kidneys or plug the tubules and gradually grow into kidney stones.

Changes in Urine Chemistry After Ileostomy

The colon normally plays a significant role in reabsorbing water, sodium, and other electrolytes. When the colon is removed or bypassed during ileostomy surgery, this reabsorption is lost. As a result, the kidneys often produce urine that is:

  • Low in volume
  • Acidic (low pH)
  • Low in sodium and calcium

This combination creates an environment that favors kidney stone formation.

Types of Kidney Stones Common in Ileostomy Patients

The two most common kidney stones seen in patients with ileostomies are:

Calcium Oxalate Stones

  • These are the most common type of kidney stones overall.
  • Dehydration and concentrated urine increase calcium oxalate supersaturation.
  • Excess dietary sodium increases calcium excretion in urine, further raising risk.

Uric Acid Stones

  • Uric acid levels in urine are naturally higher than oxalate levels.
  • When urine pH is low (acidic), uric acid crystallizes rapidly.
  • Unlike calcium oxalate stones, uric acid stones do not attach to plaques or plugs; they form freely within the urinary tract.

Management Strategies

Hydration Goals

Adequate hydration is the single most important strategy to reduce kidney stone risk.

  • A minimum urine output of 1,200 mL per day is needed to protect kidney function.
  • For individuals with a history of kidney stones, urine output should be increased to at least 1,500 mL per day.
  • If tolerated and not contraindicated by a physician, an ideal goal is fluid intake of 2-3 liters/day based on age, climate, activity level, and health conditions.

Monitoring urine output, not just ostomy output, is essential. Urine output and color are more reliable indicators of kidney hydration and stone risk.

Dietary Considerations

  • Limit oxalate-rich foods, including: Spinach and other leafy greens, Rhubarb, Almonds, Beets, Navy beans, Okra, French fries and baked potatoes, Soy products, Strawberries, Tea, Chocolate
  • Ensure adequate calcium intake, as calcium binds oxalate in the gut and helps to reduce oxalate absorption in the urine.
  • Limit excess sodium intake, as high sodium intake increases calcium excretion in urine.
  • Reduce animal protein and increase plant-based protein sources, which can help lower acid load and reduce uric acid stone risk.

Monitoring and Follow-Up

  • Regular medical follow-ups and urine testing are important to assess kidney function and stone risk.
  • Both ostomy output and urine output should be monitored routinely to ensure adequate hydration.

Prevention Strategies

Daily Prevention

  • Stay well hydrated throughout the day.
  • Use oral rehydration solutions when needed.
  • Follow a lower-fiber diet if recommended to help manage high ileostomy output.

Medication Considerations

Consult your physician if you experience vomiting, infection, or high stoma output—especially if you routinely take medications such as:

  • Blood pressure medications
  • NSAIDs
  • Diabetes medications
  • Kidney or heart medications
  • Diuretics

Ask if and when these medications should be temporarily paused and when they should be safely resumed.

When to Seek Urgent Medical Care

Seek immediate emergency care if you experience:

  • Drowsiness or confusion
  • Muscle cramps
  • Rapid heart rate
  • Ankle swelling
  • Severe abdominal pain or low back pain
  • Foul urine odor
  • Blood in urine
  • Frequent or painful urination
  • Nausea, vomiting

Key Takeaways

  • Ileostomy patients are at increased risk for kidney stones due to dehydration and acidic, low-volume urine.
  • Calcium oxalate and uric acid stones are the most common types.
  • Maintaining adequate urine output is essential for prevention.
  • Diet, hydration, and medication awareness play a critical role in kidney protection.
  • Early recognition of warning signs can prevent serious complications.

 

For more on the importance of hydration and diet for your ostomy type visit UOAA’s Diet and Nutrition Page and Eating with an Ostomy Guide. 

 

References

·Ileostomy and Kidney Stones, Kidney Stone Program, University of Chicago, High Output Ileostomies: Preventing Acute Kidney Injury, Practical Gastroenterology, Maintaining Kidney Health with an Ileostomy or Internal Pouch, IA Support

Joyce Moss, ADN, BSN, MNM, MSc Wound Healing & Tissue Repair, RN, CWS, CWCN, COCN

January 13, 2026

 

 

Going Out with IBD and an Ostomy: Finding Confidence Through Solo Activities

, , , , , , ,

Before my Inflammatory Bowel Disease (IBD) diagnosis at age 17, I always wanted to go to live events: concerts, listening parties, book signings, etc. But as a teen, I knew I held myself back. I didn’t want to look silly by showing up alone, and I’m extremely socially awkward. What if I say the wrong things? Even putting myself back in the thought process makes my skin crawl.

Post-diagnosis and at the beginning of my ostomy surgery process, some of my medical trauma began to manifest as not wanting to be alone. Combined with the social discomfort that fluctuates with an ostomy, like apprehension around leaks, clogged filters, and farts, I created the perfect recipe for opting out of things if I didn’t have a companion.

The summer of 2022 changed things.

I remember being extremely low mentally, in pain, and constantly in and out of the hospital due to a fistula that my doctors hadn’t been able to detect on scans. In that period of isolation, rumination, and reflection, I made a promise to myself that if I ever felt better, I’d take advantage of it and figure out ways to do the things I’ve always wanted to do.

When I was finally healed and ready, I was excited to enjoy some live events, but that didn’t stop the fear and anxiety.

What if I had an emergency? What if I didn’t bring enough ostomy supplies? What if I couldn’t contact my family if I needed them?

I wanted to be safe and really listen to my body. I knew the only way I’d enjoy the experience was if I felt safe and prepared.

Here are some things I find myself consistently doing before, during, and after events that increase my comfort.

My Top Tips for Going Out with IBD or an Ostomy

1. Plan Ahead & Ask Questions

Before making any plans, I have conversations with my medical team and family. Often, they give me insight, reassure me I am physically ok to do certain things, and help me find out more information.

  • ADA Accommodations: I reach out to venues & organizers for ADA (Americans with Disabilities Act) accommodations to have plans & contacts in place if I’m not feeling the best.
    • ADA accommodations can look like:
      • Medical/bigger bag allowance
      • Safe snacks & water from home
      • Priority access to seated spaces
      • Chairs while waiting in line
      • & more! I’m still discovering them myself!
  • Safe Foods: I look into food venues and menus to make sure there are safe options for my IBD and ostomy-friendly eats.
    • To avoid gas/cramping/bloating, I generally don’t eat lots of candy, fried/breaded foods, and carbonated beverages.
    • Raw fruits, veggies, popcorn & nuts, if it’s during the morning & I’m not returning home/to my hotel for an extended period.
    • I don’t consume alcohol at all.
  • Bathroom Access: You can map out restrooms when you get to the venue, but if you can find a venue map online, bathrooms should be listed! Having an official bathroom access card from an IBD or ostomy organization like UOAA is helpful, too!

It’s also always nice to have names to reference staff members you’ve been in communication with, especially to build relationships if this is a place you’ll be frequenting. Repeating this process helped build the foundation of my concert review series on social media!

2. Bring What You Need 

I’ve made several videos documenting what I keep in my concert bag, but I’m never leaving without:

  • Supplies to do at least one ostomy bag change, including a fresh pouch, a barrier, adhesive remover spray, and deodorant
  • Hydration drops
  • Pill container
  • Portable charger
  • Wireless earbuds

The earbuds may seem a little odd because they’re not medically related, but in a crowded, noisy area, or if your hands are full, it’s always nice to just pop an earbud in to make a call. Depending on the temperature and venue rules, I also alternate between a handheld fan and hand warmers.

3. Listen To Your Body

For me, having an ostomy didn’t completely resolve my symptoms or “cure” my IBD. While I completely support research that recommends surgeries that may leave patients with a temporary ostomy and increase remission outcomes, I don’t support surgery being described as “the cure.”

Extraintestinal manifestations or “non-gut related symptoms” can still occur, most of which I’m still managing with a combination of medications and mental and physical therapies.

Fatigue, joint aches, dehydration, etc., are all common with IBD, and I’ve learned that a lot of the “prep” happens long before you decide to go somewhere.

  • Dehydration: Hydrate, hydrate, hydrate. I know it’s annoying to hear it, but I always feel better if I’m properly hydrated.
  • Joint Aches: If there’s prolonged standing, walking, or sitting, I’m usually opting for some type of compression support on my hands, legs, and arches of my feet to combat any swelling or irritation.
  • Fatigue: Getting enough rest before and after solo activities helps with recovery! Generally, I’m taking things slow 1-2 days before and after each event to support my body as much as possible.

These tips are general, but they aren’t one-size-fits-all. Tweak things to your personal needs and don’t feel bad if you make a few mistakes along the way; you’re human! You should always consult your doctors if you have any questions about anything that could affect your treatment or health.

Embracing solo activities isn’t about being alone constantly. Years into this process, I’ve met some of the coolest people during my solo adventures, and I’m so thankful that I’m working towards being comfortable with just myself.

Having self-confidence that helps strengthen this type of exploration still doesn’t always come naturally to me as someone with IBD and a permanent ostomy, but I feel a lot better knowing I’m prepared!

Kaylaa’ is a Coloplast product user who received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare professional about which product might be right for you.

Coloplast develops products and services that make life easier for people with intimate healthcare needs. Working closely with the people who use our products, we create solutions that are sensitive to their special needs. Our business includes ostomy care, continence care, advanced wound care, interventional urology, and voice & respiratory care.

Follow Coloplast on Instagram, Facebook, and YouTube, or visit us online at https://www.coloplast.us/

 

Editor’s note: This blog is from a UOAA digital sponsor, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Bruce’s Ostomy Journey with Moldable Technology

, , , , , , , ,

Bruce Levinson shares his personal ostomy journey — from diagnosis and early challenges with leaks to discovering solutions that helped restore his confidence and lifestyle. In this first episode of Convatec’s Ostomy Real Stories series, Bruce talks about:

✔ Adjusting to life after his ostomy surgery

✔ The challenges he faced with leaks and pouching reliability

✔ Discovering Convatec Moldable Technology through the me+™ support program

✔ How the unique turtle-neck seal helped improve fit and extend wear time to 7–8 days

✔ Staying active and confident during water activities

✔ Using ostomy accessories and Ostomy Secrets® products for comfort and confidence

✔ Why personalized support programs like me+™ can help ostomates troubleshoot challenges

At Convatec, we believe every ostomy journey is unique. Through real patient stories, we aim to share practical experiences, education, and support that help people live life on their own terms. If you found Bruce’s story helpful, subscribe to our channel to hear more real ostomy experiences, expert insights from healthcare professionals, and practical education.

 

 

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

Smashing Cancer and Stoma Stigma

, , , , , , , , ,

By Kevin Smets

I never imagined that one of the most defining chapters of my life would begin just one month before my daughter was born.

In 2020, I was diagnosed with stage 3 colorectal cancer. A few weeks later, as my family was preparing to welcome my daughter into the world, I was preparing for something entirely different. I started chemotherapy and radiation the very same week she was born. While most new dads are figuring out diapers and sleep schedules, I was learning how to fight for my life at the same time I was learning how to be a father.

Through it all, my wife Dasha was the backbone of our family. She took care of both of us, stepping into a role that no one ever expects to have to play. Watching her carry that weight with strength and love is something I’ll never forget.

Before everything changed, I was part of something truly special called The Schmoedown – it was like WWE meets movie trivia, where larger-than-life characters and real competition collided. I stepped into that world as “The Smasher,” and what started as a persona quickly became something the fans rallied behind in a very real way. They even started a #SmashCancer movement that really carried me through it all, along the way the fans even held a 24-hour stream fundraiser that literally lifted my family up financially while I couldn’t work for nearly a year.

That preparation didn’t just help me physically, it gave me control in a situation where most things felt out of my hands.

And then after nine months of fighting, under the care of such wonderful oncologists and surgeons at UCLA medical center, I underwent stoma surgery. But here’s something that made a huge difference for me mentally. About five months before the surgery, I already knew there was a strong chance I would end up with a stoma. So instead of avoiding it, I leaned in. I researched everything I could. In my research and quest to be more educated I leaned on sites like Ostomy.org and colonclub to really acquaint myself for the journey ahead, and it was a crucial part of my surgery prep.

By the time ostomy surgery came around, I was so prepared that nurses actually commented that I knew as much as they did. That preparation didn’t just help me physically, it gave me control in a situation where most things felt out of my hands.

Today, I’m proud to say I’m in remission.

But the journey didn’t stop there.

I decided to start sharing my story online, documenting my stoma and ostomy journey. The reason was simple, and honestly, a bit personal. A friend once told me their cousin said they would rather die than have an ostomy. That stuck with me. I couldn’t shake it. And I knew right then that there was a stigma that needed to be broken.

So I made it my mission to smash that stigma.

Since then, I’ve received messages from people still in their hospital beds, sometimes just waking up from emergency surgery, telling me they found my content and it helped them feel less alone. Those messages mean everything to me.

If sharing my experience can help even one person feel stronger, more prepared, or more hopeful, then it’s all worth it.

This journey isn’t just about survival. It’s about mindset. It’s about showing that life doesn’t end with an ostomy, it just changes. And sometimes, that change can lead to a purpose you never saw coming.

———

In addition to Kevin’s Youtube channel you can find him on TikTok and as @Kevsmashcancer on Instagram.

Gloria the Phoenix

, , , , ,

Remembering Gloria by Bob Kwiatkowski

Gloria and I met by chance in November of 1969. I was driving with a friend down 8 mile road in Detroit. Gloria was with two of her friends in a car that passed us by. We caught up and started flirting with them.

I asked if they would want to meet us at a popular pizza place in Detroit.

We were surprised that they did meet us there. While my friend talked to Gloria’s two friends I talked to her. Within minutes I thought “I want to Marry this girl” She bowled me over.

We went out every day afterward and three days later, I asked her to marry me. She said “Yes but I have to tell you something, I have an ostomy.” Gloria went on to explain that she was diagnosed with ulcerative colitis at six years old. She said that she spent a lot of time worrying about where the bathrooms were, what she ate, etc. her sisters said that she was always in and out of a Children’s Hospital.

She was later properly diagnosed with Crohn’s disease. She said the surgery totally changed her life for the better, she put on weight was able to eat things she never could before. I didn’t fully understand it but I told her that if it saved her life, it was sure worth it.

Embracing Life

She was her senior class President, the first female class president. She graduated with Honors from Wayne State University and she worked for the Michigan Cancer Society for over forty years (later renamed the Karmanos Cancer Institute)

We married in 1971 and had 54 totally awesome years together.

I loved and was blessed with a wonderful women– who just happened to have a stoma.

She was so much fun. We both loved live music and attended over 100 concerts in life. She was my concert buddy.

We’re big Detroit football fans and have had Lions season tickets for 45+ years. Gloria was my Lions Football buddy.

I learned about Rolf Benirschke’s organization in the Phoenix Magazine. We were huge fans. We watched many of his games as an NFL placekicker. I was able to contact and talk to him and it is great to see all he has accomplished since.

Medical Challenges

Gloria had 28 major surgeries in life, breast cancer, a total hysterectomy, and many stoma revisions including one in 2000 at the Cleveland Clinic. Peritonitis twice, nothing ever got her down, she was always positive. Always joking with the doctors and nurses prior to and after surgery.

Gloria always worried about everyone but herself. She had four sisters and they’ve all been healthy, Gloria told me she was glad that she got everything rather than her sisters.

She loved UOAA and the Crohn’s and Colitis foundation. She volunteered with the local chapter in her younger days.

Caregiving

Luckily, I learned how to change her ostomy pouch. Gloria was in and out of hospitals in her last year, she died from a fungal infection that did not respond to anti-fungal’s. Gloria was on Imuran for 30 years, it really helped with Crohn’s flair ups but infectious disease Docs felt it allowed the fungus to roost in her body. The fungus was first spotted in one of Gloria’s lungs in 2022, Dyflucam took care of it but was not effective when it returned in 2023/24.

What really surprised me was the lack of knowledge concerning ostomies by nurses and aides. I would often return to the hospital and rehab center at all hours to help her change, to empty her pouch etc. I considered it an honor to be able to help her. Not everyone was like that. Nurses told me there is not much time spent in Nursing Schools regarding ostomies and their care.

I joined a private Ostomy Facebook group and it deeply saddens me that folks have such a negative attitude there toward life with an ostomy. Our life together was awesome, and she was an amazing wife, and I think people should know their lives are not over.

A Phoenix

Gloria was a huge Harry Potter fan and she loved “The Order of the Phoenix” a secret organization that fights evil. I ordered a shirt with their crest and asked them to change the date from 1971 to 1967, the year Gloria had her surgery she always said it saved her life. She considered “67” to be her lucky number.

It’s great to be able to recognize Gloria in UOAA’s Phoenix Society  and with a donation in her honor, advance a mission of ostomy education, support and advocacy.

We also LOVED the Phoenix magazine and will miss it, but think she would be pleased that this article could be something positive for other ostomates to enjoy.

May wife had many medical issues during her life but she faced each challenge with a smile, joking and always positive.

She was always there for me and loved by many. There were over 200 people at her funeral. We’re Catholic and I consider Gloria my greatest blessing in life by far.

I loved and was blessed with a wonderful women– who just happened to have a stoma.