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

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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.

Why does my ostomy pouch keep leaking?

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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.

Kidney Stones and Ileostomies

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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

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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

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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

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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.

Finding Community, Purpose, and Voice After Colorectal Cancer and Permanent Colostomy

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By: Sandra James, ACSW

Instagram.com/@colostomyforever

www.youtube.com/@SandraJames-LivingIt

When I was diagnosed, the first emotions that hit me were disappointment, confusion, and shame. I had spent months believing hemorrhoids were the only source of my problem. There were no other symptoms at first that would alert me outside of hemorrhoids, and when I saw the blood, I attributed it to hemorrhoids and something common and manageable. Cancer never crossed my mind. I never imagined that something as serious as colorectal cancer was there quietly invading my body without my knowing. When the diagnosis came, it felt disorienting. I kept replaying the past in my head, wondering how I missed it, how something so big could have been there while I carried on with my life.

When people asked what kind of cancer I had, I struggled to say the words out loud. Saying it was in my rectum felt heavy, embarrassing, and deeply shameful. I found myself wanting to deflect, minimize, or avoid the conversation altogether. That shame added another layer to the confusion and disappointment I was already carrying—an emotional weight I never expected to come with a diagnosis.

I had no one I could sit across from, look in the eyes, and say, “Do you understand this?”

After my diagnosis, my medical team gave me pamphlets and printed materials explaining my condition and treatment such as colostomy surgery. The information was thorough and medically sound, but it wasn’t what I needed at that moment. I wasn’t looking for a curriculum or clinical language—I needed to understand what was happening to me right then, in real life. What helped me most was hearing from real people.

Sandra at UOAA’s 2025 National Conference in Orlando.

I spent long stretches of time watching videos on YouTube where people openly shared their cancer journeys, their fears, their side effects, their recoveries, and their lives beyond diagnosis. Some had their own YouTube channels. Others were featured on platforms like The Patient Story. Watching them helped me process what I was facing in a way pamphlets couldn’t.

While YouTube helped me feel less alone in the early days of my diagnosis and treatment, it didn’t fully replace the need for real, human connection. I didn’t know anyone in my immediate community who had an ostomy. I had no one I could sit across from, look in the eyes, and say, “Do you understand this?”

At some point, I came across another ostomate on social media who mentioned the United Ostomy Associations of America (UOAA) National Conference. I remember feeling something shift in me when I heard about it. It felt like an invitation — not just to an event, but to belonging. I registered, booked a flight, and went — not fully knowing what to expect, but knowing I needed to be there. Those three days became one of the most meaningful experiences of my entire cancer journey. From the moment I arrived, I felt an overwhelming sense of familiarity and ease. I was surrounded by people who felt like they had known me my whole life, even though we had just met. There was no shame, no need to explain myself, no awkwardness. Just understanding. UOAA’s conference wasn’t simply educational — it was grounding. It wasn’t just supportive — it was life-sustaining. For the first time since my diagnosis, I felt whole again. Not fixed. Not “back to normal.” But grounded in who I was becoming.

From Watching to Sharing: Why I Started My Own Channel

The realization to start my own channel came while I was writing my book, My Colorectal Cancer Journey. By the time I reached chapter two, I understood that telling my story solely through a book would take time — time that many people facing a new diagnosis surgery simply don’t have. I remembered how desperately I needed immediate connection and reassurance, and I knew I wanted to offer that same immediacy to others.

Starting a YouTube channel felt less structured, more human, and more accessible. It allowed me to speak honestly, show the realities of ostomy life, and create space for conversations that often don’t happen elsewhere — conversations about fear, shame, stigma, resilience, and growth.

My channel wasn’t created to educate in the traditional sense, even though many people now describe it that way. It was created to connect. To say, “You’re not alone,” without conditions or explanations. To show what life can look like after diagnosis, after surgery, after everything changes.

The same connection I once searched for, I now try to offer — one video, one conversation, one shared moment at a time.

View a selection of Sandra’s videos at the links below and look for her unique perspective on UOAA’s YouTube Channel soon!

Caring for My Stoma: What Works for Me

My New Travel Bag: What I Take with Me

My New Reality Bag Change: Living with a Permanent Colostomy Bag

The Truth About Living with an Ostomy Bag (Myths vs. Facts)

How to Measure Your Stoma

Tips for Choosing the Right Ostomy Supplies

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Navigating the world of ostomy products and supplies can feel overwhelming, but finding the right system and products are crucial for comfort and security.

The appropriate pouch is determined by a number of factors says certified ostomy nurse Linda Coulter. “First the pouch must be appropriate for the type of stoma and

A nurse selects ostomy product samples donated by a wide variety of manufacturers for the stoma clinic at UOAA’s 9th National Conference.

output (e.g. don’t use a urostomy pouch for a colostomy/ileostomy and vice-versa). Stoma characteristics such as size, protrusion, and surrounding contour (e.g. scars, creases, bulges, etc.) also affect pouch choice.”

Other factors, such as an individual’s lifestyle and dexterity play a role.

Here’s some helpful tips whether you are just out of the hospital or you’re having new issues and wondering if you should try something new.

Get Professional Help and Sample Supplies

  • Always consult with an ostomy nurse first for information and recommendations tailored to your body and stoma type. If you’re having trouble with your current system, such as skin irritation or recurrent leaks, ask them to help you find a solution and assist in getting it prescribed. Find an ostomy nurse available in-person or virtually or an Outpatient Ostomy Clinic near you.
  • Remember that every person is different, and you need to find what works best for you. People in online discussions don’t always say their ostomy type ileostomy, colostomy, urostomy and that is key to know what type of supplies to use.
  • Expect some trial and error. It’s common to try several types of products until you find what works best. You can request product samples from manufacturers or a supplier that works with your insurance company. Talk with members of a UOAA Affiliated Support Group, many have a supply closet where members share excess supplies.

Picking an Ostomy Pouching System

You’ll hear the terms appliance, ostomy pouch system, ostomy pouch, or ostomy bag. They are all just referring to a device consisting of pouch and a skin barrier (wafer, baseplate or faceplate) that sticks to and protects the skin around the stoma.

Understanding the terminology will help you communicate your needs effectively. “When possible, patient preference is taken into account for things like 1-piece vs 2-piece systems, clear vs opaque pouches, and pouch brand,” says Linda Coulter, BSN, RN, CWOCN.

Types of ostomy bags or pouches ileostomy

  •  One-piece system: The skin barrier/wafer and pouch are pre-attached. When you change the pouch, you change the whole thing (including the barrier).
    Why people choose it: Simple application and use, low profile under clothing, hernia or bulge near stoma, affordability.
  • Two-piece pouching system: A two-piece system lets you change the pouch while keeping the skin barrier/wafer in place. The pouch attaches to the barrier through a flange/coupling (often a snap-style ring or possibly an adhesive connection).Why people choose it: Versatility. Can easily switch between higher capacity or shorter pouch. Allows pouch to be changed more frequently than the skin barrier. Skin barrier stays in place while pouch is changed, best for higher stoma output, skin sensitivities, fast pouch changing.

Types of Urostomy Pouches

Pouch Closures

  • Drainable (open-ended): You can empty these while they are still attached. Colostomy or ileostomy pouches: use tail closures or separate plastic
    Colostomy Bag One-Piece

    Colostomy Pouch One-Piece Closed End

    clamps/clips. Urostomy pouches (urine): use a valve or “tap closure”. As the name implies, high-output pouches are designed to hold larger volume ileostomy output (rarely colostomy) and have tap closures.
    Why people may choose it: Have output throughout the day requiring pouch to be emptied 3 or more times per day, quick and easy to empty.

  • Closed-end: These are sealed at the bottom and typically discarded after one use. They are most commonly used by colostomates who have regular elimination patterns or can irrigate. Insurance usually covers up to 2-closed pouches per day.
    Why people may choose it: Can remove and throw it away, no draining or clamps.

Other Pouch Choices

Pouch options can include filtered (for automatic gas release and odor) or unfiltered (best with thick stool). Clear pouches are available to monitor output or color and opaque pouches for those who prefer not to see it. A variety of sizes are available depending on output and lifestyle. Urostomates often attach their pouch to an additional drainage bag or container at nighttime.

Skin Barriers

Picking the best skin barrier is critical since it protects the skin around the stoma and enables a secure seal and fit. Your choice depends on your stoma, output, and other factors, such as sensitivity. Frequent changers may ask about gentle adhesion options while those with liquid output may require a stronger adhesion. If your stoma size is changing or oval you may want to get cut-to-fit or moldable skin barriers while, if it is stable and round, pre-sized are a convenient option.

  • Flat: Flat barriers sit level on the skin. Why people may choose it: When the stoma sticks out, pouching with hernia or creases.
  • Convex: Refers to a curved skin barrier (or a system/insert that creates this curve) which helps press inward on the skin next to the stoma. This can help the stoma protrude outward, which helps output go into the pouch instead of leaking under the barrier. There are a variety of depths and flexibilities available.
    Why people may choose it: When the stoma does not stick out enough, or soft tissue, skin folds/creases.

Ostomy Accessories

Depending on the person and stoma type, accessories include products such as cleaning wipes, adhesive removers, stoma powder (pectin-based, non-medicated), stoma paste or barrier ring (provides a seal around the stoma), stoma belt, scissors, wafer extenders, skin protectant wipes, and lubricating deodorant. These products can improve wear time, skin condition, and overall pouching experience.

Ask an ostomy nurse what may be helpful for you.

As you explore different ostomy products and supplies, UOAA’s Ostomy Marketplace Directory can be a helpful place to discover ostomy-related vendors, pouching systems, accessories, clothing, support resources, and more. Browse the directory to learn about available products and connect with companies serving the ostomy community.

UOAA’s Ostomy Marketplace Directory

Keeping Track of it All

Know Your Ostomy Supplies Checklist

Know your ostomy pouching system and supplies. Once you’ve found the supplies working best for you be sure to keep track of the names, sizes and order numbers. Download the UOAA Know Your Ostomy Supplies Checklist tool to have handy as you work with your ostomy nurse, doctor, supplier or insurance to get the ostomy pouching system and accessories you need.

 

 Blog by Ed Pfueller, UOAA Director of Strategic Communications with medical review by Linda Coulter, BSN, RN, CWOCN

The Missing Step in Abdominal Surgery Recovery (And Why It Matters)

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By Kaylene Hernandez, PT, DPT

Recently, I had the privilege of conducting a workshop with our local UOAA affiliated ostomy support group. As I looked around the room at these resilient individuals, each with their own journey of recovery and adaptation, I was struck by a common thread in their stories. Many had received excellent surgical care and post-operative medical support, yet few had been offered physical therapy as part of their recovery process.

If you’ve undergone abdominal surgery, you might be dealing with unexpected challenges like persistent pain, difficulty returning to activities you love, or new symptoms you weren’t prepared for. Perhaps you’re frustrated that your recovery feels incomplete, or you’re worried about complications like hernias that seem to be developing despite following all your surgeon’s instructions.

These concerns are valid, and more importantly, they’re often addressable.

This gap in care matters because physical therapy after abdominal surgery can truly set you up for long-term success in ways that extend far beyond initial healing. While physical therapy is standard practice after orthopedic surgeries like knee or shoulder replacements, it’s rarely considered routine care following abdominal procedures.

In this article, I’ll guide you through understanding why physical therapy is crucial for your recovery and how it can address the three most common challenges you may be facing, namely:

  • Preventing hernias
  • Managing scar tissue
  • Returning to the activities that bring meaning to your life

What is Abdominal Rehabilitation?

Abdominal rehabilitation is a musculoskeletal and movement specialty within physical therapy that focuses on abdominal and pelvic muscle function in relationship to bowel, bladder, and sexual functioning as well as lumbopelvic and hip mobility. This specialized approach recognizes that abdominal surgery affects far more than just the surgical site, it impacts your entire core system, your posture, your breathing patterns, and your movement strategies.

Unlike general physical therapy, abdominal rehabilitation specifically addresses the unique challenges that arise after procedures involving the abdominal cavity, including ostomy surgeries, hernia repairs, bowel resections, gynecological surgeries, and other abdominal procedures.

Understanding How Abdominal Surgery Impacts Your Body

The effects of abdominal surgery extend far beyond the incision site. Understanding these impacts helps explain why comprehensive rehabilitation is so important for your recovery.

Adhesion Formation: The Hidden Challenge

One of the most significant and often overlooked consequences of abdominal surgery is adhesion formation.

Adhesions are internal scars that form naturally as the body heals from tissue damage caused by surgery, infection, injury, or radiation. While they’re a normal part of healing, they can become a source of pain and dysfunction.

The statistics are sobering: 90% of abdominal surgeries and nearly 100% of open pelvic surgeries cause adhesions. What makes adhesions particularly challenging is that they cannot be diagnosed through standard imaging or diagnostic testing.

Diagnosis is only possible through direct observation during surgery, but this is typically avoided to prevent further adhesive processes.

Adhesions can lead to:

  • Chronic abdominal or pelvic pain
  • Bowel obstruction requiring emergency surgery
  • Reduced organ mobility affecting digestive function
  • Fertility issues in reproductive-aged individuals
  • Need for additional surgical procedures

Changes in Posture, Breathing, and Movement Patterns

After abdominal surgery, your body naturally adopts protective postures and movement strategies. While these serve an important purpose during early healing, they often persist longer than necessary, leading to:

  • Postural changes: Forward trunk lean, rounded shoulders, and protective guarding
  • Breathing alterations: Shallow breathing patterns that reduce diaphragm excursion
  • Movement compensations: Altered lifting mechanics and transfer strategies
  • Core system dysfunction: Disruption of the coordinated system involving your diaphragm, pelvic floor, abdominal muscles, and spine stabilizers

The Comprehensive Benefits of Physical Therapy after Abdominal Surgery

Evidence-based abdominal rehabilitation offers numerous benefits that can significantly improve your recovery and long-term outcomes:

Physical Benefits

  • Decreased pain through targeted interventions and movement optimization
  • Improved muscle recruitment in abdominal, spine, and pelvic muscles
  • Enhanced range of motion in affected areas
  • Reduced excessive scarring through manual techniques and scar management
  • Prevention of ileus (intestinal blockage) through early mobility strategies
  • Less noticeable scars through specialized scar treatment techniques

Functional Benefits

  • Restored visceral mobility improving organ function and digestive health
  • Improved peristalsis supporting healthy bowel function
  • Faster return to prior activity levels with reduced risk of re-injury
  • Enhanced quality of life through comprehensive symptom management

Understanding Hernia Prevention: It’s All About Pressure Management

Hernias, including stomal hernias that can occur after ostomy placement, are often symptoms of poor intra-abdominal pressure management rather than simply surgical complications.

When you hold your breath during daily activities, something that happens unconsciously throughout the day, intra-abdominal pressure increases dramatically and seeks the path of least resistance.

Unfortunately, your recent surgical site often becomes that path.

Through physical therapy, you can learn new breathing strategies and movement patterns that help manage intra-abdominal pressure more effectively. These aren’t just theoretical techniques, they’re practical skills you can apply when lifting groceries, playing with grandchildren, or returning to your favorite exercises.

Key Strategies for Hernia Prevention

  • Coordinated breathing patterns during lifting and exertion
  • Progressive loading techniques to strengthen your abdominal wall safely
  • Activity modification strategies that protect your surgical site while maintaining independence
  • Recognition of warning signs that indicate you need to adjust your approach

Addressing Scar Tissue and Adhesions: A Proactive Approach

Surgical scar tissue affects how your core muscles function and increases the risk of adhesive disease, a condition that can lead to chronic pain, bowel obstruction, and additional surgeries. The challenge with adhesions is that while surgery can sometimes address severe cases, additional surgery often introduces more scar tissue, creating a frustrating cycle.

Physical therapy offers a non-invasive alternative through evidence-based techniques that can significantly improve how scar tissue behaves, reducing its impact on your daily function and potentially preventing the need for revision surgeries.

Evidence-Based Scar Management Techniques

  • Manual scar massage to improve tissue mobility and reduce restrictions
  • Myofascial mobilization targeting the abdominal wall and surrounding tissues
  • Visceral mobilization to optimize organ mobility and reduce internal adhesions
  • Dry needling to address trigger points and scar tissue limitations when appropriate
  • Instrument Assisted Soft Tissue Mobilization (IASTM) techniques for soft tissue mobilization and scar remodeling

Restoring Functional Mobility: Beyond Basic Movement

After abdominal surgery, your body naturally adopts protective postures to guard the surgical site. While this guarding serves an important purpose in early healing, it often persists longer than necessary, contributing to abdominal wall stiffness, loss of spinal mobility, decreased ribcage expansion, and compensatory movement patterns that can lead to pain.

Physical therapists are uniquely qualified to assess these movement compensations and prescribe specific exercises to address them. The goal isn’t just to restore basic function, but to help you return to activities you love, whether that’s caring for family members, returning to running, or getting back to gardening.

Personalized Activity Return

The key is individualization. A physical therapist can get creative with exercise progressions that are specific to your goals and interests, making rehabilitation both meaningful and sustainable. This might include:

  • Sport-specific training for athletes returning to competition
  • Workplace ergonomics for those with physical job demands
  • Grandparent preparation for those wanting to lift and play with grandchildren
  • Hobby-related movements like gardening, crafting, or musical instruments

The Core System Connection: Addressing Unexpected Symptoms

One aspect of abdominal surgery recovery that often surprises patients is the potential impact on bowel and bladder function. This occurs because abdominal surgery disrupts the “deep core” system, a coordinated network including the diaphragm, pelvic floor, abdominal wall muscles, and spine stabilizers.

These muscles must work as an integrated system for optimal function. The pelvic floor, in particular, plays crucial roles in continence control, pelvic organ support, and efficient bowel and bladder emptying.

When the Core System Is Disrupted

When surgery disrupts one component of this system, you may experience new onset symptoms such as:

  • Urinary or fecal incontinence
  • Constipation or changes in bowel patterns
  • Pelvic organ prolapse symptoms (feelings of pelvic heaviness)
  • Pelvic pain or discomfort

Physical therapists trained in pelvic health can help restore core system coordination and address these symptoms through targeted interventions, often eliminating the need for additional medical treatments or procedures.

The Three Phases of Rehabilitation after Abdominal Surgery

Effective abdominal surgery rehabilitation typically progresses through three distinct phases, each with specific goals and interventions tailored to your healing timeline and individual needs.

Phase 1: Incision Healing, Protection, Bowel and Bladder Health

Typical Time in Phase: Days to Weeks

Scar Healing Focus

  • Following your medical team’s instructions for incision care
  • Monitoring for signs of infection including redness, drainage, warmth, improper closure, fever, or excessive swelling
  • Learning proper wound care techniques and when to contact your healthcare provider

Healthy Bowel and Bladder Habits

  • Maintaining adequate hydration to support healing and digestive function
  • Learning to listen to natural urges rather than delaying or forcing
  • Identifying potential bowel and bladder irritants that may affect your recovery
  • Establishing healthy bathroom postures and techniques

Safe Body Mechanics

  • Pain management techniques that reduce reliance on medications
  • Early mobility strategies to prevent complications like blood clots
  • Education on safe posture and movement for daily activities
  • Guidance on self-care activities and adaptive techniques

Phase 2: Scar Tissue and Visceral Mobility, Restoring Range of Motion

Typical Time in Phase: Weeks to Months

  • Progressive strength restoration that respects healing tissues
  • Comprehensive scar tissue management through manual techniques
  • Spine, hip, and ribcage range of motion improvement
  • Myofascial mobilization of the abdominal wall and surrounding structures
  • Visceral mobilization to restore organ mobility and function
  • Breathing pattern optimization for pressure management
  • Introduction of functional movement patterns

Phase 3: Strengthening and Returning to Functional Mobility

Typical Time in Phase: Months and beyond

Advanced Core Strengthening and Stability Training

  • Balance training to reduce fall risk and improve confidence
  • Return to full functional mobility and previous activity levels
  • Activity-specific training for work, sport, and recreational pursuits
  • Long-term maintenance strategies for ongoing health
  • Independence in home exercise programs and self-management techniques

Your Path Forward

Abdominal surgery represents a significant event in your body’s history, but it doesn’t have to define the limits of your recovery.

With proper rehabilitation, you can not only return to your previous level of function but often exceed it by learning better movement strategies, developing stronger core stability, and gaining a deeper understanding of your body’s needs.

The key is recognizing that recovery is an active process that extends well beyond surgical healing, and seeking out qualified professionals who understand the unique challenges you’re facing.

Whether you’re dealing with persistent pain, concerned about hernia prevention, struggling with scar tissue restrictions, or experiencing unexpected symptoms, specialized abdominal rehabilitation can provide the roadmap to help you reclaim your life and activities with confidence.

About the Author: Kaylene Hernandez, PT, DPT is a doctor of physical therapy with MovementX, proudly serving Northwest Indianapolis specialized in pelvic health across the lifespan. Her advanced training covers male and female pelvic floor dysfunction, pediatric pelvic health, oncology rehabilitation, lymphedema, and dry needling. With an approach to care that is to listen deeply, treat holistically, and empower constantly, Dr. Hernandez is committed to helping you thrive in every season of life.

Citations

  1. Svensson-Raskh A, Schandl A, Holdar U, Fagevik Olsén M, Nygren-Bonnier M. “I Have Everything to Win and Nothing to Lose”: Patient Experiences of Mobilization Out of Bed Immediately After Abdominal Surgery. Phys Ther. 2020 Dec 7;100(12):2079-2089. doi: 10.1093/ptj/pzaa168. PMID: 32941610; PMCID: PMC7720638.​
  2. Okabayashi K, Ashrafian H, Zacharakis E, Hasegawa H, Kitagawa Y, Athanasiou T, Darzi A. Adhesions after abdominal surgery: a systematic review of the incidence, distribution and severity. Surg Today. 2014 Mar;44(3):405-20. doi: 10.1007/s00595-013-0591-8. Epub 2013 May 9. PMID: 23657643.​
  3. Broek RP, Issa Y, van Santbrink EJ, Bouvy ND, Kruitwagen RF, Jeekel J, Bakkum EA, Rovers MM, van Goor H. Burden of adhesions in abdominal and pelvic surgery: systematic review and met-analysis. BMJ. 2013 Oct 3;347:f5588. doi: 10.1136/bmj.f5588. PMID: 24092941; PMCID: PMC3789584.​
  4. Lubczyńska A, Garncarczyk A, Wcisło-Dziadecka D. Effectiveness of various methods of manual scar therapy. Skin Res Technol. 2023 Mar;29(3):e13272. doi: 10.1111/srt.13272. PMID: 36973982; PMCID: PMC10155853.​
  5. Chmielewska D, Malá J, Opala-Berdzik A, Nocuń M, Dolibog P, Dolibog PT, Stania M, Kuszewski M, Kobesova A. Acupuncture and dry needling for physical therapy of scar: a systematic review. BMC Complement Med Ther. 2024 Jan 2;24(1):14. doi: 10.1186/s12906-023-04301-4. PMID: 38167051; PMCID: PMC10759514.​
  6. Sinclair M. The use of abdominal massage to treat chronic constipation. J Bodyw Mov Ther. 2011 Oct;15(4):436-45. doi: 10.1016/j.jbmt.2010.07.007. Epub 2010 Aug 25. PMID: 21943617.​
  7. Zia Z, Riaz H, Imtiaz I. Effect of early physical therapy interventions on post-operative ileus following abdominal hysterectomy. J Pak Med Assoc. 2023 Mar;73(3):650-652. doi: 10.47391/JPMA.5447. PMID: 36932773.​
  8. Barral, Jean-Pierre. Visceral Manipulation. Vista CA: Eastland Press, 1993. ​
  9. Arung W, Meurisse M, Detry O. Pathophysiology and prevention of postoperative peritoneal adhesions. World J Gastroenterol. 2011 Nov 7;17(41):4545-53. doi: 10.3748/wjg.v17.i41.4545. PMID: 22147959; PMCID: PMC3225091.

 

Learning from Leaks: Tips for Staying Prepared and Positive on Your Ostomy Journey

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It happens…Speaking with Ostomates in many stages of their Ostomy journey is the best part of my role at Ostomysecrets®. A frequent topic, and cause for concern, is the dreaded LEAK. My answer is always the same, they happen to all of us; however, they should be few and far between.

Well, it happened to me. I have had my Ostomy for over twenty years, I measure time in between leaks in years at this point, not months, days or weeks. My record is five years, and I had been on a streak of almost two years.

I live in Southern California, and my husband’s side of the family lives in Las Vegas, NV. When I was first recovering from surgery, I worked very hard with my home health nurse to independently manage my ostomy so that we could make the drive to Vegas for my first Thanksgiving as an Ostomate. I reached that goal, and we had a successful trip.

We make this journey 2-3 times a year, up the Cajon Pass, across the Mojave and into the shining city of neon in the middle of the desert. I have never had any issues with my ostomy during these travels, and we’ve had so many fun adventures through the years: swimming in fancy hotel pools, attending shows and concerts, hiking, dining, stargazing and maybe a bit of gambling too.

Last week, we made the drive to Las Vegas again. I typically get 5 days wear time, so I changed my pouch the day before we left. My plan was to change my pouch again before heading back to California. In Barstow, CA – the halfway point of the journey – we stopped for a quick dinner planning to quickly get back on the road to Las Vegas. Then our plans changed.

Something did not feel right, and I discovered that my pouch had leaked. All my ostomy confidence drained from me. I tried not to panic and to focus on finding a solution. This was not an optimal situation, but Barstow is a crossroads town featuring a number of Truck Stops. I love a road trip, and something I know to be true about Truck Stops is they have showers! We happened to be right in front of one of these truck stops, so I walked in, paid my $18 and waited my turn.

My husband helped me get my suitcase, and my trusty me+ Starter Kit that I always carry my supplies in when I travel anywhere overnight. I will always be a better safe than sorry girl, and I would never leave home overnight without my supplies.

In that moment, standing in the Truck Stop shower waiting area, I was feeling very vulnerable and had tears in my eyes. I let the attendant know I was having a medical issue, and that my husband would be coming in with me to help. She immediately opened a shower for me, and got us extra towels. I was so comforted by the kindness of strangers and their willingness to make it a little easier for me.

I showered, completed my pouch change, got myself together and we got back on the road. I was rattled and feeling all of the emotions of what had just happened. The story I share, and what I know to be true, is that my Ostomy saved my life. Even in this low moment, that truth remains. When I was battling my Ulcerative Colitis diagnosis, at my worst moment, I was going to bathroom 45 times a day. Travel, road trips and adventure were just not possible; I was just too sick.

As we finished the drive through the desert, I felt doubt and anxiety creeping in. We had a big family pool party the next day, and I was worried that the remaining supplies that I had would not be enough. Would I ruin my family’s trip?

I had to quiet those thoughts. Why would this trip be any different that the countless other trips? Why would I have pouching issues? My Convatec pouching system has served me well all these years. It helps me to feel freedom and confidence to complete the adventures I so enjoy.

We ended up having a wonderful weekend! I slept soundly in our hotel bed, I swam with all of the cousins at our family BBQ, we dined out and explored The Vegas Strip. My pouch held up, working as expected and intended, and I achieved my typical five-day wear time – even with the 110 degree desert heat and pool time.

Our ostomies don’t just save our lives; they enable us to live full and happy lives. We thrive because of our ostomies and the pouching systems we rely on, not in spite of them.

My comment still stands: leaks happen to all of us, sometimes. If you are experiencing frequent leaks, please call our Convatec me + team and certified ostomy nurses. They are available to you by phone at 1-800-422-8811.

Editor’s note: This blog is from a UOAA digital sponsor, 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.

Finding Your Way: The Journey Forward with an Ostomy

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By Ted Leamy

This piece is adapted from my closing talk at the 2025 UOAA Conference held in Orlando Florida. Think of it as a last walk around the conference neighborhood before we all went home — with a few of my own observations.

I’m Ted. I’ve been living with an ostomy 43 years. I work in live production events — sound engineering & sound design for concerts and large sporting venues. My career has taken me all over the country and around the world.

At the start of the conference, I talked about how much it means to keep moving forward — even when the rules of the game seem to have changed. How our stomas are not just physical. They change how we see ourselves. Our sense of Self.

Having an ostomy doesn’t disqualify you from much. It demands a different kind of presence to lead the life you want. And that’s what I think we’ve all seen this week in the sessions and in conversations.

For me, the heartbeat of this conference is in the quiet moments — in the hallways, at breakfast, sitting in the lounge between presentations. That’s where appreciation happens — not just of new facts, but of each other.

Body Literacy

Many people get to move through their day without thinking much about their body — grab coffee, rush to work, sit in meetings. That seems normal if your body is working fine. We ostomates don’t get that option.

With an ostomy, you’re pulled into your body constantly. You are checking, you are aware. You know exactly what you ate recently.

This is sometimes referred to as ‘body literacy’ – the ability to read your own body’s signals and patterns. It’s a skill that gets better with practice. You learn to recognize subtle signs before they turn into problems. You understand your personal normal.

Medical stability is the foundation everything else builds on. Without it, you’re just trying to survive. With it, you can start thinking about what comes next.

I used to think this constant awareness was just another burden. Needless to say, I wrong. Now I think body literacy is one of my most valuable life skills. I notice things now I would have missed before… the taste of good coffee, a great conversation, the feeling of a successful day where everything just worked.

Presence and Appreciation

When you have experienced uncertainty through the lens that we have, you gain appreciation for ordinary moments. Not because you’re trying to be grateful – because you actually are.

People talk about mindfulness like it’s something you have to work toward. For us, it’s just another day. We live it by necessity, not by choice. No expensive spiritual retreat with gurus required.

This kind of presence can get exhausting at times, even border on hyper-vigilance. But kept under control, that presence is valuable body literacy — lessons we can transfer to all aspects of our lives.

For me: it has made me feel more alive. When asked what it’s like living with an ostomy for forty years, part of what I say is it taught me how to be present in my life instead of just racing quickly through it.

Three Stages of the Ostomy Journey

Over time I’ve noticed the journey with an ostomy isn’t one continuous road. It shifts, and it has stages. Understanding where you are in these stages can help make sense of current challenges and hint at what might be next in life.

I think of it as three stages:

1. Getting medically stable
2. Becoming functionally independent
3. Learning to flourish and thrive

First things first. You can’t do much until you’re medically stable. This is about listening carefully to your doctors, managing complications, or recovering from a procedure.

When leaving the hospital after one of my surgeries, when asked how I was feeling, I would joke: “I’m upright, I’ve got pants on, and I’m taking nourishment by mouth.”

That was my humorous way of saying I was medically stable. On my way home.

Medical stability is the foundation everything else builds on. Without it, you’re just trying to survive. With it, you can start thinking about what comes next.

Wanting to flourish is being human. It’s honoring the life you were given by actually living it fully.

Becoming functional is about being proficient in looking after your stoma and appliance. It’s creating a new daily routine that includes all your other hygiene and ‘get ready’ rituals. Getting comfortable in this whole new world.

When you are functional, you become grateful. Functional is a big deal! You can leave the house without mapping every bathroom. You can eat dinner with friends. You can sleep through the night with minimal interruptions.

But here’s what happens sometimes. You get functional, and it feels so secure that you lock yourself in. You find your safe foods, your reliable routines, your predictable schedule. Too predictable?

The problem is when functional becomes your ceiling instead of your floor. Does this make sense? Have you been there? I have. Most of us have, I think.

Flourish and Thrive

Let’s talk about moving from functional (stage 2) to flourishing (stage 3).

Flourishing is what you want out of your life — not in spite of your ostomy but in fact because of your ostomy and the life-saving consequences that got you this far.

Flourishing is when you stop asking “Can I do this with my ostomy?” and start asking “Do I want to do this?”

It’s when your ostomy becomes just one part of your life, not the organizing principle of your existence. It’s when you stop apologizing for your limitations and start celebrating your capabilities. It’s when you stop planning around your ostomy – and start planning around what you want out of life.

Sounds easier than it is to do! When we get functional, there are loud applause from friends, family, and doctors. We too are excited. Except we are people. And just being stable, then functional, is not enough. We want to thrive and flourish and become the person we imagine ourselves being.  That’s where the gap shows up — the space between functional and flourishing.

Mind the Gap

There is a gap between being functional and flourishing. We can be so pleased with being functional that we decide to stay in that mode — never pushing forward, never trying new things, never creating new adventures that self-doubt warns against.

Sometimes we get lost in that gap. You’re no longer a patient, but you’re not quite thriving either. It’s easy to feel disoriented, questioning if wanting more is worth the risk.

If we want more, are we ungrateful for what we have? Deep question. I say no.

Thriving is the aspiration. However it looks for each of us, that’s the direction forward.

Being grateful for your medical stability and functional independence doesn’t mean you have to stop there. You can be thankful for what you’ve achieved AND still want to grow, explore, and push your boundaries.

Wanting to flourish is being human. It’s honoring the life you were given by actually living it fully.

The ostomy journey is not a straight line. Circumstances will sometimes force you backward. What matters is finding your way back — regaining functionality, and taking that leap of faith toward flourishing again.

Inspiration Without Comparison

It’s things like this conference that show us what life could look like. Encourages us to keep moving forward. Whatever stage of the journey you find yourself.

When you see someone else thriving — really thriving — it expands your sense of what’s possible for yourself. But careful about comparing. We are all on a unique journey, each of us at different stages — not just in our ostomy journey but in our life journey.

The 19th century playwright Oscar Wilde said: “Be yourself, everyone else is already taken.”

Closing Reflections

Each of us knows our own life better than anyone else.  We’ve already been carrying our courage forward every day — showing up here only made it more visible. That same courage is what lets us reach for more. Thriving is the aspiration. However it looks for each of us, that’s the direction forward. And whatever tomorrow brings, we already carry what it takes to keep moving toward it.  Thanks for spending time with me.

Resilience Story: Matt Marra

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A couple years ago, I wasn’t thinking much about my health. I was a little overweight, but nothing alarming. Life was busy working full-time while chasing around two wild but wonderful kids under five.

Then in November 2023, everything changed. I started bleeding when I used the bathroom. Over time, the urgency and frequency increased, and I found myself going 6–8 times a day. After bouncing between urgent care, my primary doctor, and a GI specialist, I was diagnosed with ulcerative colitis in January 2024.

Those three months waiting for a diagnosis were a mental warzone. Googling symptoms like “dark red blood in stool” returns a fun list: hemorrhoids, IBD, and cancer. While I was relieved to finally have a diagnosis, IBD wasn’t something I ever imagined dealing with.

At first, I managed with diet. I avoided trigger foods and even used ChatGPT to check what I could safely eat when dining out. But during a vacation in February I flared badly. What was supposed to be a beautiful cruise celebrating my brother’s and sister-in-law’s marriage ended up being an endless visit to excursions on the toilet and lying in bed. On the flight home, I had to abandon my 3-year-old in his seat four separate times to rush to the bathroom. It was a rude awakening to how terrible ulcerative colitis and iBD in general could be, and created a new fear constantly in the back of my mind that the next thing I eat or do may make me sick for weeks at a time. Things did not get better when we got back.

On Monday, March 4th, I went to the ER thinking I’d get some medication and go home. Instead, I was admitted. “Steroids always help! You’ll be out in a few days,” they said. But by the weekend, I was even worse.

Then I tried biologics. “Infusions never fail,” they told me about 30 minutes before I failed my first one.

After multiple failed treatments, and now two weeks into my hospital stay, I was transferred overnight to a hospital in the city. Surgery was mentioned early on as a worst-case scenario, just in case. My brother had questions for the surgical team at that time, but I brushed them off: “We’re so far from that! There’s no way it’s going to happen.”

Flash forward to the third week. I was exhausted, nauseated, and in pain. Surgery stopped being the last resort. I wanted it. I told the surgeon I wished the decision would be made for me, because mentally, I wasn’t strong enough to choose that road on my own.

On Friday, March 22nd, after continued lack of progress, my care team made the call: it was time. My colon had perforated. I was rushed into emergency surgery for a total colectomy. I woke up with an ileostomy and a new chapter ahead.

Adjusting to a stoma was overwhelming. Seeing a piece of your intestine, or stoma, outside your body doesn’t exactly quickly become “normal.” I hadn’t even realized, 30+ years into life, that people pooped out of their stomachs. My wife and I were told we were brave during ostomy training, since many people can’t even bear to look at themselves post-surgery. I didn’t feel brave, just dazed. But I found ways, through products and routine, to feel okay in my own skin.

At the 5k, I met people who had lived with ostomies for years, people who got it. That sense of community grounded me. Seeing others thrive helped me believe I could, too.

Matt Marra showing his ostomy belt while running the Run for Resilience Ostomy 5k in Illinois, his first year after surgery. Photo by Anne Marra.

Discovering My Resilience

Managing leaks, mastering appliance changes, showering without disaster, sleeping through the night without anxiety, all of it took time. There were 3 a.m. blowouts. There were tears. There was grief and anger.

But I adapted. The stoma became a part of me. Most of the time, I didn’t notice it — and neither did anyone else. I could eat again. I didn’t obsess over bathroom access. I had energy. I had my life back.

And most importantly — my ostomy saved my life.

I spent 30 nights in the hospital. On the worst days, walking three laps around the floor felt like running a marathon. I told myself: just make it to the next milestone. So when I saw the UOAA’s 2024 Run for Resilience Ostomy 5k in Downers Grove, Illinois, I signed up, not just to raise awareness, but to prove something to myself.

Crossing that finish line in just my second-ever 5k was emotional. It felt like a full-circle moment. I was back. Maybe not the same. But just as strong.

Support made all the difference. My wife Anne helped with bag changes, middle-of-the-night cleanups, and the emotional weight of it all. My brothers, Nick and Joe, made sure I was never alone during those long hospital nights.

At the 5k, I met people who had lived with ostomies for years — people who got it. That sense of community grounded me. Seeing others thrive helped me believe I could, too.

From March 2024 to June 2025, I lived a very full life with my ostomy. I traveled to weddings in Mexico and Colorado. I climbed mountains. I flew to Austria and Slovakia for a week-long work trip. Ten-hour flights used to terrify me. Now? No problem. My ostomy didn’t hold me back. If anything, it gave me freedom.

I continue to push myself, no matter the challenges. To show my kids what resilience means.

To every UC patient I’ve talked to about surgery: no, I don’t get a commission. I just know what my ostomy did for me. How UC wrecked my life, and how surgery gave me peace, physically and mentally. I know my path was fast: diagnosis to surgery in five months. But in some ways, I’m grateful. I didn’t suffer for years. I got my life back sooner. For as mentally draining as it was to constantly worry about my health, what I was eating, and where the closest bathroom were – I can only imagine what that is like for those that have been through this for decades battling their chronic IBD.

My ostomy was temporary, though it felt like a permanent part of me. I had two more surgeries, in March and June 2025, to transition to a J-pouch. The stoma is gone, but the scar remains. A battle scar. A reminder. And something I’ll always be thankful for.

For most of my time with an ostomy, I asked: “Why me?” What were the odds? Could I have avoided this if one treatment had worked?

But near the end of my journey, that shifted. I started thinking: “Wow… I’m glad I had an ostomy.” Because it taught me I could not just survive with it but that I could live a full life with it. Looking back on those early conversations in the hospital, when the idea of pooping out of your stomach felt surreal, I never imagined I’d feel that way just one year later.

I continue to push myself, no matter the challenges. To show my kids what resilience means. That no matter what knocks you down, you get back up.

And this October, I’ll lace up again for the 2025 Run for Resilience for yet another milestone. Another chance to prove I’m still standing and thriving.

 

 

Visit Matt’s Run for Resilience fundraiser at https://runsignup.com/marra to support the nonprofit programs and services of UOAA. To learn more or sign-up for a Run for Resilience Ostomy 5k near you or virtually visit ostomy.org/5k. 

Navigating Body Image After Ostomy Surgery

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When you get an ostomy, most of the advice you’ll hear is practical. It comes in boxes and routines: bags and baseplates, barrier strips and rings. There’s talk of wear time and skin prep, of what to eat and when to empty. These logistics matter, of course; they’re a necessary first step after a major surgery. But beneath this adjustment is often another layer of healing, one that goes beyond the physical.

An ostomy doesn’t just change how your body works. It can also change how you feel inside. It can shift how you see your body, yourself, and your worth, affecting everything from what you wear, to where you go, to how close you let others get. Amid all this change, you might even start to wonder: How could I ever accept myself like this?

For many, life with an ostomy involves the ongoing work of making peace with your body—to meet it not with shame, but with patience, gentleness, and ultimately acceptance. It’s about rebuilding trust with a body that may suddenly feel unfamiliar and allowing that body to once again feel like home.

Body image after ostomy surgery

More than just how you look, body image is about comfort, confidence, and feeling like yourself. Ostomy surgery can profoundly disrupt that sense of self-connection.

A 2018 research review found that poor body image is one of the most common emotional challenges after ostomy surgery. Even when recovery is technically going well—when a WOCN nurse smiles and says, “You’re doing great”—you might hear a voice inside that replies, “Yeah, right,” as waves of self-consciousness or grief roll in.

For many, social stigma only adds weight. Harmful myths that say ostomies are dirty or shameful can take root internally. One study found that nearly half of people with permanent colostomies experience this kind of stigma, which can erode emotional well-being and self-worth.

Even when surrounded by love, you might find yourself hiding. The shirt once worn with pride might get folded away, replaced by oversized clothes chosen more for camouflage than comfort. You might avoid mirrors, not out of vanity, but out of grief for a body that once felt like yours. Intimacy may feel distant, shadowed by the fear of being seen, touched, or rejected.

In all of this, you’re not alone.

What factors shape body image after ostomy surgery?

Body image isn’t fixed; it’s shaped by your history, current circumstances, and how you emotionally process change. Several key factors can influence how someone adjusts:

1. Age and stage of life: Research shows that younger adults often experience greater body image distress after ostomy surgery. This is a time when identity, sexuality, and self-expression are still being shaped—when you’re still learning who you are and how you want to be seen.

In this context, everyday moments can take on new complexity. You may find yourself doing quiet check-ins throughout the day: Is the bag visible? Is it full? Is it leaking? These small, repeated considerations can influence how you move through the world, especially in a culture where bodies with ostomies are rarely represented.

2. Reason for surgery. The reason behind an ostomy may also impact how you adjust to life with it. Even with the same procedure, the emotional meaning is shaped by the life story it enters—and that story can be the lens through which the body is seen.

Research suggests that people who undergo ostomy surgery due to cancer, for instance, may report lower levels of body image distress. While an ostomy can be life-saving in many contexts, cancer survivors may be more likely to see it that way: as a visible mark of survival and strength.

For others, the emotional meaning may feel more complex. When surgery follows years of chronic illness, misdiagnosis, or medical trauma, for example, the experience can carry different associations. Perhaps it’s not triumph, but relief, fatigue, or even resignation. One study found that some participants with inflammatory bowel disease (IBD) viewed their stoma as an embarrassing complication of their condition—something tied more to shame than strength.

But meaning isn’t fixed. With time, support, and self-compassion, your relationship with your ostomy can evolve, no matter the reason behind it.

3. Temporary vs. permanent ostomy. Research also shows that temporary stomas can lead to greater body image distress. When your ostomy isn’t permanent, it can feel like you’re living in a body that doesn’t quite belong to you—just a version you’re passing through. This in-between state can create a kind of psychological limbo: it’s hard to fully grieve what’s been lost and hard to fully accept what is.

While permanent ostomies can bring their own grief, they may also bring a sense of clarity that limbo does not. When you know this is your body now, you may be better equipped to make peace with it.

What can help: Tips for navigating body image after ostomy surgery

1. Find the right ostomy products for you. It’s hard to feel at ease in your body when the products meant to support it don’t feel reliable. Worrying about leaks, irritation, or a poor fit can quietly wear on your confidence. But when your pouching system truly works for you, it can create space for deeper healing and acceptance.

If the medical look or rustling sound of your ostomy pouch makes you feel more self-conscious, know this: not all pouches are the same. Some are designed to move with your body, to bend and stretch as you do. Some fold into a smaller shape that tucks easily under clothes. Some come in colors like black or gray, offering an alternative to a medical beige. Pair these ostomy bags with supporting products like barrier strips and moldable rings, as needed, and you can find a system that fits both your ostomy and your life.

2. Remember what your body is for. After ostomy surgery—after the shock, the healing, and the slow return to everyday life—it’s easy to forget what your body is still doing for you.

It breathes without asking. It heals, even when you’re not watching. It adapts in ways you never expected, creating space for you to live the life you want. Your body allows you to laugh, cry, rest, move, connect, and wake up to a new day. Again and again, that is something worth honoring.

3. Focus on what lights you up. On tough body image days, it can help to shift your focus away from your body. Try asking:

  • What reminds me that I’m still me, despite all I’ve been through?
  • Who or what helps me feel seen beyond how I look?
  • What brings me joy, even for a moment?

Maybe it’s the warmth of your morning tea. A dog’s thumping tail when you pass through the door. A text that says, I get it.

These small lights matter. They can remind you that your life is bigger than managing a stoma, and that you’re here to live in ways that have nothing to do with appearance.

4. Let go of the timeline. Healing isn’t linear. There is no “right” time to feel okay in your body again. No checklist or countdown—just you, moving through it all in your own way, in your own time.

Some days might feel lighter, like body acceptance is just within reach. Other days may stir up discomfort or grief in places you thought had healed. That doesn’t mean you’re failing; it means you’re human. Release the pressure to arrive somewhere quickly and trust that just showing up for yourself is its own kind of progress.

Your body is still worthy after ostomy surgery

After ostomy surgery, your body is not broken. It is changed. It is not less worthy, just newly shaped.

You don’t have to love every part of it. You don’t have to feel grateful all the time. But your body, with its stoma and its pouch, is still here.

It’s still breathing. Still yours. And still deserving of care and peace.

References

Ayaz-Alkaya S. (2019). Overview of psychosocial problems in individuals with stoma: A review of literature. International wound journal, 16(1), 243–249. https://doi.org/10.1111/iwj.13018

Guo, L., Rohde, J., & Farraye, F. A. (2020). Stigma and disclosure in patients with inflammatory bowel disease. Inflammatory Bowel Diseases, 26(7), 1010–1016. https://doi.org/10.1093/ibd/izz260

Jayarajah, U., & Samarasekera, D. N. (2017). Psychological adaptation to alteration of body image among stoma patients: A descriptive study. Indian Journal of Psychological Medicine, 39(1), 63–68. https://doi.org/10.4103/0253-7176.198944

Mahjoubi, B., Mirzaei, R., Azizi, R., Jafarinia, M., & Zahedi-Shoolami, L. (2012). A cross-sectional survey of quality of life in colostomates: A report from Iran. Health and Quality of Life Outcomes, 10, 136. https://doi.org/10.1186/1477-7525-10-136

Simmons, K. L., Smith, J. A., Bobb, K. A., & Liles, L. L. (2007). Adjustment to colostomy: Stoma acceptance, stoma care self-efficacy and interpersonal relationships. Journal of Advanced Nursing, 60(6), 627–635. https://doi.org/10.1111/j.1365-2648.2007.04446.x

Yuan, J. M., Zhang, J. E., Zheng, M. C., & Bu, X. Q. (2018). Stigma and its influencing factors among Chinese patients with stoma. Psycho-Oncology, 27(6), 1565–1571. https://doi.org/10.1002/pon.4695

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.

Ostomy Anxiety: Horror in the Grocery Store?

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By Robin Glover

Wallet, cell phone, keys…I’ve always had my essentials when I leave the house. But for the past several years, I’ve added something else to my checklist: ostomy supplies.

When you have an ostomy, you have to be ready for anything. The instant fill, the gas attack, and of course, the leak. Oh, the dreaded leak. It can happen anytime. Or, so it seems. But does it really?

I have this image in my head of catastrophe. There I am, in the middle of the grocery store aisle, my bag has completely fallen off as I stand in a puddle of stool that’s splashed across the floor while output shoots out of me like an over-the-top 80’s horror movie as I stand petrified, children crying out and everyone staring and pointing in disgust.

It always seems to be fear that holds me back more than my ostomy.

I mean, pretty worst-case-scenario stuff. But, it’s hard not to go there. Imagine, worrying about poop (or pee for urostomates) coming out of a hole in your stomach. Like, your front. Where everybody sees. This isn’t some “oopsie” you can pretend never happened. This is a big ol’ brown or yellow stain on the front of your shirt. And nobody’s been drinking coffee.

But is this image even real? I do have a tendency to imagine the worst. Some may even say it’s a talent. My therapist calls it a “cognitive distortion.”

In reality, I’ve had leaks in public. And that’s all they’ve ever been – leaks. Small little leaks that can be covered with tape until I’m able to get to a good spot. In the rare case (two times), it’s been a bigger leak, I was still able to get home and take care of it.

So, it’s fear more than reality. I’m scared of being embarrassed in public due to my ostomy bag. It’s a common fear. Everyone is afraid of being embarrassed. It’s a deep-rooted fear. But my ostomy seems to add a lack of control. I can control things like what I wear and how I act, but I have this stoma with a mind of its own.

It’s like having that “one friend.” Sure, they’re great at home when no one else is around, but take them out in public and you have to constantly worry about what they say. Or, perhaps what they ”blurt out” without warning. (However, unlike a loud friend, you are allowed to use tape to control ostomy pouch leaks).

My ostomy (ileostomy) is permanent. I will have it for life. I need to improve my relationship with it. One way I’m doing that is by being prepared. That’s really all I can do. Before I go somewhere, I check to make sure it’s good. Check the seal. Check the stoma. I now use ostomy pouches with a see-through window just for peace of mind.

I try to carry tape with me everywhere I go. It’s simple athletic tape, but it seals leaks and I can add a lot if need be. That I put in my pocket.

In a smaller bag/sweet fanny pack, I have extra precut ostomy bags, disposable bed pads (brand new, out-of-the-box, they’re very thin and easy to fit into a small bag), ostomy paste, paper towels (I use blue Scott Shop Towels because they’re soft and extra absorbent), and extra trash bags (the ones that come with the pouches). I have everything I need for a quick change. If I’m going somewhere where I’m a little worried I might not be able to find a place to change fast, I carry a backpack with more supplies and a complete change of clothes.

I try to carry tape with me everywhere I go.

More than that, I’ve been working on “decatastrophizing” before I even leave the house. Instead of simply imagining the worst, I think about the realistic possibility of it actually happening. I’ve worn an ostomy pouch for over four years and have never come close to the disaster I envision. It’s basically physically impossible for the bag to simply fall off. Every part of the wafer would have to come loose at once. Plus, I typically wear an ostomy wrap (and just got an ostomy belt). So…not going to happen.

There might be a leak. But I’ve got that handled. I’ve handled it before. It’s not a big deal.

It always seems to be fear that holds me back more than my ostomy. That’s good news, though. Because while I can’t control what comes out of me and when, I can control how I deal with my anxiety about it.

Robin Glover is a writer based in the Houston area. He has a permanent ostomy after being diagnosed with Crohn’s Disease in 2017.

Meet Christina & Molly – Two Friends, One Mission

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We’re Christina and Molly — best friends who both have Crohn’s disease and ileostomies. Over the years, we’ve come to realize what a gift it is to have each other’s support on this journey, and now we want to share that gift with others.

Christina is 43 and has lived with Crohn’s for 24 years. She’s had her ileostomy for 13 years and lives in Texas with her husband and their 7-year-old son. Her son was conceived and delivered while she had her ileostomy, proving that yes, a successful pregnancy can be done!

Molly is 38 and has had Crohn’s for 21 years and an ileostomy for 18. Born and raised on the island of Oahu, Hawaii, she now splits her time between California and Hawaii. Thanks to her ileostomy, she has a great quality of life — she wakesurfs, does hot yoga, plays pickleball, and, best of all, no longer has to plan her life around bathroom trips.

We’ve partnered with UOAA to create videos and share resources that provide honest, uplifting, and helpful support for ostomates — whether you’re newly adjusting or have had your ostomy for years. Your life isn’t over– you’re just simply learning your new normal. We are hoping to help you thrive in your new normal living with an ostomy.

Christina and Molly started sharing their health journeys on YouTube at Crohn’s Talk: Belly Laughs and Battles where you can find more of their videos. Stay tuned to @TheUOAAInc on YouTube to discover new videos by them for the ostomy community in the weeks ahead. Feel free to comment and let us know what topics  you would like to see discussed. Disclaimer: They are not providing medical advice, but sharing to help others. 

Fears, Faux Pas and Fulfillment

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My Ostomy Story

Hello! My name is Marcia Benedict. I have a urostomy due to bladder cancer.

Facing an ostomy and what life would be after surgery can be overwhelming and I found myself repeating, “I never expected this”.  I was dumbfounded, speechless; and at first, all I could do was cry. I hope my story will give you the strength, support, and desire to thrive beyond expectations.

My Journey

After retiring to Tucson, AZ in 2019, I remembered hearing, “if you ever find yourself in need of medical attention and don’t know who or where to turn, search for the nearest teaching hospital”. I sought medical attention at Banner University Medical Center. The support from doctors and their care team, my Ostomy nurse (CWOCN) and our local Ostomy Support Group has been invaluable.

Despite the initial fear and challenges, I adapted to my new normal by being my own best advocate. I needed to speak up, be determined and resilient.Through it all: Urogram, cystoscopy, cytology, TURBT (transurethral resection of bladder tumor).  Diagnosis: T2/T3 tumor of the bladder invading the vaginal wall. Treatment: chemotherapy, radical cystectomy and hysterectomy. Recovery: one day at a time. Time for emotional and physical healing, following doctors’ orders, being kind and patient with myself. I survived each step, repeating each as needed along the way, and so can you!

Be Prepared – a Few Hints and Hacks

As I was living alone and my cat was not proficient in nursing duties, I requested skilled nursing rehab (SKF) upon hospital discharge. Though my surgeon recommended recovery with home health, he understood my dilemma and helped make those arrangements through his nurse navigator and case manager, followed by home health services (visiting nurse, PT/OT, nutritionist) when I returned home.

Support was such a lifeline in helping me better understand and cope,

Before surgery, I ensured I had a waterproof mattress pad, chux (puppy pads) for my bed and bathroom. Upon discharge from SKF and home health therapy, I preordered my ostomy supplies with the help of my WOC nurse. Over time, I became efficient in changing my pouching system, reducing the time from over an hour to now 15 minutes. Practice makes perfect (most of the time). Despite initial challenges, I adapted with determination. I set alarms on my phone to remind me to empty my pouch and avert potential leaks. Just in case, I always carry a puppy pad under the front seat of my car. To this day, I have repeat calendar schedules to change my pouch. Once, driving on the Interstate, I improvised with an empty water bottle as a makeshift urinal when restrooms were closed during the pandemic. I also keep an empty disposable water bottle (with the cap) in my car and a complete pouch change packet in my purse or backpack. These experiences taught me valuable lessons and have helped me manage with confidence.

You Are Not Alone

Two days before my surgery at the suggestion of my WOC nurse, I went to an Ostomy Support Group, a local affiliate of UOAA. To my surprise, I walked into a roomfull of ostomates of all types. They were welcoming. In a roundtable setting, they talked about the facts, the foibles and the freedom of living with an ostomy. They gave me strength to face what was coming and faith that there was life after ostomy surgery.

That first meeting led me to fulfill one of my retirement goals: …to give back by helping  others facing similar journeys. Recovering during the pandemic, in-person meetings were cancelled. Support was such a lifeline in helping me better understand and cope, I signed up as a phone contact. The Local Group initiated monthly Zoom meetings; and when restrictions were lifted, in-person monthly meetings reconvened.

I’m excited to be attending for the first time this year’s UOAA National Conference in Orlando. I’ve heard from previous attendees the information is educational, inspiring and a good time is had by all. I look forward to meeting some of the wonderful UOAA personnel who have helped me along my journey. Enough can’t be said about their resources: tips, educational publications, particularly the “Living with a Urostomy” guide online, supportive Ostomy Academy discussions and video sessions. If you haven’t tapped into the website www.ostomy.org or the UOAA Facebook page, I encourage you to check it out.

The Future

Initially, everything was daunting, but my expectations for retirement and recovery have exceeded my dreams. I’m healthy, happy and fearless.

Despite the initial fear and challenges, I adapted to my new normal by being my own best advocate.

Surrounded by family and friends, I’m active. I play golf, swim, and dance again. I travel by car, plane, and train in the U.S and internationally. Supplies and all, I braved a 26-day cruise. I even rode a camel!

Wherever I go, my “Bathroom Access Card” is in my wallet, and translated in 2 foreign languages on my phone. In recovery, I found the time and strength to redesign and renovate my kitchen. Made time to socialize. I recently attended my oldest granddaughter’s college graduation and all the festivities. I’m looking forward to it all over again with my second granddaughter who is studying medicine. Since my surgery, I feel blessed indeed, going on 6 years NED (no evidence of disease).

And I’m no longer single! I have a wonderful relationship with a man who adores me for who I am, including my ostomy. There is little to keep me from a fulfilling life, and you shouldn’t let a pouch stop you either.

You’ve Got This!