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.

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.

10 Tips for Intimacy with an Ostomy

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Life with an ostomy can stir up deeply vulnerable questions: Will anyone love me like this? Does my ostomy bag make me unattractive? How can I be intimate while managing it? These anxieties often settle in the quieter corners of ostomy life, where many ostomates fear their bodies may never be chosen or desired.

Chloe Olsen has spent her whole life learning what it means to live with an ostomy. In this blog, she draws on more than 20 years of lived experience to share an honest perspective on connection, communication, and confidence. Her insights offer reassurance, perspective, and a reminder to fellow ostomates that they are worthy of love without conditions.

10 tips for intimacy with an ostomy (from a 20+ year ostomate)

Unlike most other ostomates, I never had a “before my ostomy.” I didn’t have to relearn intimacy because I’ve had an ostomy my whole life. This means I learned intimacy with an ostomy bag—first crushes, first touch, first relationships. For me, there was no “before my ostomy” to mourn—just figuring things out in real time like everyone else.

This is the only body I’ve ever been intimate in. Every version of intimacy I’ve ever known has included my ostomy bag. And that’s why I know you don’t owe anyone everything.

This topic in particular is especially important to me because I didn’t grow up seeing bodies like mine being desired or sexualized. I had no idea what intimacy would look like for me because there wasn’t anyone like me out there talking about it. After a lifetime of trial and error, of tender moments and of ones I’d rather forget, I’m sharing my tried and tested intimacy tips for any ostomate who needs straightforward honesty—not sugarcoating.

  1. You don’t owe anyone your medical history.

When meeting someone new, we can sometimes feel obligated to share our medical past. Don’t forget—you get to decide when and how much you share. There were times I would over-explain out of fear, thinking clarity would protect me. It didn’t—boundaries did.

You are not obligated to provide any details you don’t want to share, and this includes any questions you don’t feel comfortable with. A simple explanation is enough.

  1. You get to decide when to tell someone about your ostomy.

The pressure of this used to weigh on me a lot. If I didn’t tell someone soon enough, I would feel as if I were lying to them somehow, like keeping this secret from them was a form of deception. But if I told them right away, it would sometimes change their view of me—or even the way they treated me.

My advice: if you really like someone, tell them about your ostomy bag as soon as possible, as soon as you feel comfortable. Personally, I would always tell them right away, because I find it to be an excellent detector of who isn’t meant to be.

  1. Phrasing is important. Confidence is everything.

If you do decide to tell your intimate partner about your ostomy, your own attitude can make the biggest difference. If you frame it as something positive, like that it gave you your life back, they probably will too! But if you say, “Now I’m forced to live with this for the rest of my life!” it gives your ostomy a negative connotation, and they may be more likely to react negatively as well.

I know it’s easier said than done, but confidence really is everything! If you go in with no fear, as if your ostomy is no big deal, it likely won’t be a big deal to them either.

  1. If someone is uncomfortable, it’s not a reflection of your self-worth.

Not everyone handles it well, and learning not to internalize those reactions took time. But over time, you learn the difference between curiosity and discomfort—and you stop internalizing reactions that don’t belong to you.

Discomfort doesn’t mean you’re undesirable. It means they’re not equipped for your body or your honesty—and that’s not yours to fix.

  1. One-night stands are NOT off the table.

This is one of the biggest things I wish someone had told me! Having only known ostomy life, I let the stigma surrounding it convince me that one-night stands weren’t possible for me—but that’s actually the furthest thing from the truth. Hearing from my close ostomate friends a little bit older than myself, I learned that it’s actually not a big deal. Although it can be scary at first (how would this random stranger react?), one-night stands with an ostomy are not harder, just more intentional. Only share what’s necessary, and prep more so you can think less.

Most importantly, make sure you feel safe. Believe it or not, your ostomy will likely not be their primary focus—in fact, they may not even notice it at all.

  1. Communication is key.

Intimacy isn’t mind-reading, it’s communication—and that goes both ways. At first, I didn’t know how to communicate effectively during intimacy. Partners would assume they could accidentally “break” my bag or hurt me somehow. I learned to speak up for myself through trial, error, and a lot of unlearning silence. Don’t be afraid to just tell them, “I’m not fragile,” or educate them in the moment so they feel comfortable. Communication doesn’t ruin the moment—it makes it possible, and more enjoyable when they better understand your body.

And if they don’t want to take that extra moment of care, then maybe they aren’t worth your time and energy, and that’s your choice to make. Remember—you can always back out or say no.

  1. Prep is not unsexy.

Emptying your ostomy bag beforehand, wearing something that makes you feel secure, maybe even putting on a fresh bag—all these extra steps we take are just taking care of your body, an important part of intimacy. I know it can detract from the spontaneity, but take it from me, you don’t want to risk having a leak during an intimate moment—major mood killer.

Trust me, it’s worth taking the extra time—having peace of mind changes everything.

  1. The right intimacy doesn’t make you feel like your body is a problem.

I’ve felt the difference between being accommodated and being wanted. And once you feel the latter, you stop settling for the former. For too long, I stayed in unhealthy relationships because I didn’t think I deserved better. I believed I was “defective” or “damaged,” and therefore not in a position to be picky or stand up for myself. It took a while, but once I let myself believe that I was worthy to be loved the way I wanted, I never looked back.

You’re not something to tolerate, work around, or “get past.” You’re not less deserving because of your ostomy. You’re the body someone gets to be close to.

  1. Desire without shame.

I grew up feeling a lot of shame around my body, not because of my ostomy, but because of what I was taught to believe about it. In navigating intimacy, I’ve learned that it’s okay to crave it, and it’s okay to communicate your needs.

Desire doesn’t disappear because you have an ostomy or disability—it adapts, like everything else.

  1. There’s no “right” way to do this.

Reminder: You don’t owe intimacy to prove confidence, healing, or normalcy. There’s no timeline for feeling ready. Confidence with intimacy isn’t a finish line. It shifts with age, partners, energy, and life. And that’s normal—ostomy or not. It comes with time and learning to be comfortable in your own body before you can be comfortable with someone else.

If you’re just learning intimacy in your body—you’re not behind, you’re doing it.

Find more support for intimacy with an ostomy on Instagram and in Coloplast’s free e‑book, The Ostomate’s Guide to Intimacy.

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.

Chloe 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.

RETA’S HOLIDAY REFLECTIONS ON LIVING WITH SHORT BOWEL SYNDROME

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For me, the holiday season is an annual reminder of how far I’ve come in my short bowel syndrome (SBS) journey. In my experience, life with SBS has been challenging, but I’ve found that it can be workable. That’s not to say it’s easy; it’s never easy. There are many days when I spend more time in the bathroom than out, but my goal is to have more good days than bad. Through it all, I have worked hard to keep my life as “normal” as possible. I’m fortunate to have a husband who has fully supported me through this journey and has been a source of strength for me. Together, we refuse to let SBS be the dominating factor in our life. My name is Reta and this is my story.

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

A Holiday Health Crisis

On Christmas Day 2012, I was given 10 hours to live. What started as a bad case of diarrhea around Thanksgiving had progressed over the next month to severe diarrhea with vomiting. I was in and out of the hospital while doctors ran tests and tried to manage my symptoms, but my condition quickly deteriorated until I’d gone into renal failure, septic shock, and respiratory failure. My bowels were dead and poisoning my body; doctors weren’t sure they could save any of my bowels, let alone my life.

Doctors gave me a five percent chance of survival with surgery, and no chance without. With those odds laid out before him, my husband said a prayer and told the doctors to go ahead and do the surgery. Thankfully, I do not remember any of this. December 22, 2012 was the last day I really remember before waking up several days later—after the surgery.

A New Reality: Navigating Life After My SBS Diagnosis

Surgery went much better than anyone expected, but when I finally woke up, I learned that my life had changed. I was diagnosed with short bowel syndrome (SBS), a rare, serious and chronic malabsorption disorder that occurs when parts of the intestine are removed, and the remaining intestine may not be able to absorb enough nutrients from food and drink. I had a high output jejunostomy and was put on parenteral support (PS), also referred to as parenteral nutrition, because my body couldn’t absorb nutrients on its own anymore. At that time, I was told I’d probably be on PS for the rest of my life.

The doctors talked about how good my stoma looked and how they were going to try to get my PS down to 15 hours a day. But they wouldn’t even talk about when I could go home. Days dragged into weeks and weeks into a month, and then two months.

Finally, I was allowed to go home—and that’s when reality hit me hard. The day I was supposed to go home, we had major logistics to figure out: Who was going to teach me how to infuse PS? Who was going to supply it? Where was I going to get ostomy supplies? Did I need home health? Who was going to provide that? We were fortunate that the team at the hospital helped my husband and me to figure out these details, and I was finally able to go home.

At 10pm that night, back at home, my infusion nurse was showing us how to hook up my PS. Twelve hours every night. At the time, I was told that there wasn’t any hope of me ever getting off of it. Even bedtime proved to be a challenge. For years, my husband had slept on the left side of the bed; but as I looked at our bed that first night at home, I realized the bathroom was on the left side. So, we held the great bedroom debate and finally decided to switch sides, to allow me to be closer to the bathroom. Something as simple as that made me realize how much SBS would impact almost everything I do.

But life went on. My doctors worked hard to get me down to a more manageable PS level. It was still very restrictive, but I promised myself that I wasn’t going to let the ostomy and PS rule our lives. I went back to work, even though no one thought I would. I carried all my supplies through airports and I can’t tell you how many airplanes. I was trying to live as normal a life as I possibly could—even when my next SBS challenge came.

I remember one time when my pump malfunctioned. I woke up on Sunday morning, and my PS bag was still full; it was supposed to be empty. My pump had probably stopped working right after I went to bed, and I didn’t get any nutrition that entire night. When I went to unhook the bag and saw that it was still full, I had a major temper tantrum: My first official meltdown since my SBS diagnosis. I stomped my feet; I cried; I screamed; I threw things. It wasn’t fair that I had to carry that bag all day and all night. My husband recognized this for what it was—another reality check. He held me and told me it was going to be alright until I stopped kicking and screaming. Meltdown #1 averted.

Learning About An SBS Treatment

Then one day at an appointment, my gastroenterologist handed me a sticky note. The note had GATTEX® (teduglutide) for subcutaneous injection written on it. He said it was a prescription medicine used in adults with short bowel syndrome who need additional nutrition or fluids from intravenous (IV) feeding (parenteral support). After discussing the treatment option with me, we felt I fit the criteria. GATTEX is also approved for children 1 year of age and older. It is not known if GATTEX is safe and effective in children under 1 year of age.

He told me GATTEX may cause serious side effects including making abnormal cells grow faster, polyps in the intestines, blockage of the bowel (intestines), swelling (inflammation) or blockage of the gallbladder or pancreas, and fluid overload. He told me these are not all the possible side effects of GATTEX. I remember my doctor asking me a very important question: “Wouldn’t it be great if over time we could reduce the amount of volume and number of days you’re on PS? I think this drug might help us do that.”

Please continue reading for additional Important Safety Information.

Wow! Finally, a sliver of hope. I weighed the risks and benefits, and together my doctor and I decided that I should start GATTEX. But it proved not to be an easy journey. Many obstacles were thrown in our path. It took six months, letters to insurance companies, and an appeal process to make it happen. In fact, my efforts motivated the insurance company to write a policy that they previously did not have, and establish a timeframe to be eligible for GATTEX.

I remember the first day the GATTEX box arrived at my house, not too long after the new year. My PS-infusion nurse talked me through the process of how to prepare and measure my dose and give myself the subcutaneous injection the right way. I told her I could do it; and I could—until I sat down in my kitchen with the needle and realized what a huge commitment it was. I thought about this and everything I had already been through for a few minutes and decided to take my first step on this new journey.

My doctors and I were happy with the results we saw, and over time my healthcare team began slowly lowering my PS volume. This was just my experience though, and others may have a different experience. My doctor continued to monitor me for any side effects, like injection site reactions. Adults starting GATTEX should have their colon and upper intestines monitored for new polyps at the end of the first year on GATTEX and then as needed and at least every 5 years. I still had a long road ahead of me, and my doctors were still looking at other treatment options. Eventually, one of the options they offered was reconnecting my colon. I weighed that option and decided to proceed.

Another Decision: Weaning Off Parenteral Support Under Medical Supervision

After I’d recovered from surgery to reconnect my colon, we started discussing weaning me off the PS. I’ll admit I was scared. It had been keeping me alive for two years. The thought of not having that “nutrition lifeline” scared me a great deal. I started asking myself questions: What if it doesn’t work? What if I lose too much weight? What if, what if?

With the encouragement and supervision of my team of doctors, over time we started slowly reducing the amount of PS volume and cutting my days on PS until I didn’t need it anymore. I honestly didn’t know how I was supposed to feel. For the first time in a long time, I didn’t hook up to a bag of nutrition every night. Today I am still off PS, and I still take GATTEX as directed by my doctor. My doctor also continues to monitor me for side effects like stomach-area pain or swelling and injection site reactions. And keep in mind, not all patients who take GATTEX will wean off their PS. These have been my results, but everyone responds to treatment differently.

Even though I still have SBS and bathroom challenges every day, freedom from PS has been liberating. I can go out to dinner or a concert at night without having to plan my schedule around hooking up to PS. It feels great not to be tied to that schedule anymore.

I choose to focus on the good in my life and not let SBS drag me down. Some days are harder than others, but I live for those good days. My husband and I have pledged to make the most of every day. I retired from my job, and we have embarked on the next phase of our lives, checking off items on our bucket list. And, for me, not being on PS makes it a little easier to check off those bucket list items. I am a very fortunate woman. I have a husband who has supported me from the moment this SBS journey began. He has made it infinitely more manageable.

If you’re just starting down this road, you may think your best days are behind you. In my experience, that’s not always the case. SBS is a very challenging condition. If you are living with it, I would encourage you not to give up. Read everything you can about SBS. Ask questions and then insist on answers. Work with your healthcare team to figure out what makes your symptoms worse. Learn as much as you can to take control of your “new normal.”

IMPORTANT SAFETY INFORMATION

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

Making abnormal cells grow faster

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

Polyps in the intestines

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

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

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

Blockage of the bowel (intestines)

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

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

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

Swelling (inflammation) or blockage of your gallbladder or pancreas

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

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

Fluid overload

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

The most common side effects of GATTEX include:

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

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

What should I tell my healthcare provider before using GATTEX?

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

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

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

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

What is GATTEX?

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

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

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

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

©2025 Takeda Pharmaceuticals U.S.A., Inc. 1-877-TAKEDA-7 (1-877-825-3327). All rights reserved. Takeda and the Takeda logo are trademarks or registered trademarks of Takeda Pharmaceutical Company Limited. GATTEX and the GATTEX logo are registered trademarks of Takeda Pharmaceuticals U.S.A., Inc. US-TED-1649v1.0 11/25

 

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.

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.

Why do some people with ostomies name their stoma?

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Stella. Betty Poop. Homer the Stoma.

To some, stoma names may seem silly or childish. A stoma is not a pet, after all. Not a car or childhood stuffed animal. People don’t typically name their liver or spleen—so why, then, would anyone name a stoma?

For many people with ostomies, naming their stoma isn’t just a quirky custom; it’s a meaningful practice. It’s not about trivializing a potentially life-saving surgery or minimizing the complexity of ostomy life. Rather, it’s a tool for healing. Naming may be a way to reclaim agency in moments of powerlessness, to bring levity to something heavy, and to create connection—with yourself and others—amid profound change.

Naming your stoma as a coping strategy

Seeing your stoma for the first time may be a deeply jarring experience. That small section of intestine or urinary tract, visible through your abdominal wall, can trigger a range of emotions: shock, grief, maybe even a sense of bodily betrayal. Your stoma may feel like a glaring marker of surgery, illness, or loss—a visible reminder of all you’ve been through or what makes you feel different.

Adapting to an ostomy is a deeply personal journey, shaped by physical, psychological, and social factors. For many, the experience goes far beyond ordering ostomy supplies or managing pouch changes. It touches self-image, identity, and the core questions we ask in moments of significant change: Who am I now? What does this mean for my life?

While there’s no single path through this process, research shows that how you relate to your stoma matters. How you view it, speak about it, and ultimately integrate it into your life could play a pivotal role in emotional and psychological adaptation.

One surprising but potentially powerful tool in the process? Naming your stoma.

In a 2018 survey by ostomy care nurses Jane Cook and Jackie Hatton, 75% of respondents who named their stoma said it helped them cope with the aftermath of surgery. As one participant explained, naming their stoma helped it “become part of [them]”—less foreign, more personal.

In this way, naming may be an act of reclamation, a powerful gesture when you have a new body part stitched into place, a system rerouted and reimagined. New language—pancaking, flange, peristomal skin—comes with new routines and instructions. When so much is out of your control, naming your stoma might be one thing you get to choose. It’s one way to say: I didn’t choose all this, but I can choose how I meet it.

The role of humor and connection in adapting to ostomy life

Naming a stoma isn’t just about finding agency or control; it may also bring humor, creativity, and connection into an experience that is often heavy.

Many people with ostomies choose names that reflect the “personality” of their stoma. Maybe it’s Sassy Sasha, if it has a flair for dramatic entrances. Great Gassy, if it’s mysterious but persistent. Or Mildred, if it’s all business. With a name, suddenly the stoma isn’t just a surgical site. It’s Oscar, having a bad day and making sure everyone knows it. It’s Lola, the life of the party when you’re trying to focus. It’s Hank, sneaking up at the most inopportune moment. These names may transform the stoma from something clinical into something human, giving you language to talk about it, joke about it, even roll your eyes at it.

As playful as many stoma names are, it’s not just about cracking jokes for the sake of it. Research shows suggests that humor may be a valuable coping strategy for some people with ostomies, helping to promote acceptance and psychological resilience. With a little wit, the stoma may shift from a source of shame or discomfort into a character in the story of healing: sometimes annoying, sometimes funny, but no longer invisible or feared.

This reframe may also help break down the stigma surrounding ostomies by encouraging open communication. In one study, a survey participant shared how their family shouts, “Shut up, Lily!” when their stoma acts up, turning what might otherwise be an isolating experience into shared laughter. What once felt unspeakable becomes something everyone can talk about—a starting point for connection and support.

Respecting personal choice: Not everyone names their stoma

While naming a stoma can be a meaningful part of the healing process for some, it’s not for everyone—and that’s okay. Choosing not to name a stoma can be just as intentional as a name like Rosie or Winnie the “Poo.” In fact, some people with ostomies say that naming can create a sense of separation they don’t want. They don’t see their stoma as something “other,” something that needs to be softened or humanized. The stoma is simply “my stoma.” No need for nicknames or extra narrative—it just is.

Interestingly, for those who do choose to name their stoma, that relationship may change over time. Some ostomates who initially name their stoma eventually stop using the name. For them, what began as a coping mechanism may be less necessary as the stoma becomes just another part of their body. As the name fades, so does the need to frame the stoma as anything other than a part of moving forward.

Living with an ostomy: Your story, your terms

What naming offers isn’t a right or wrong way to “do” life with a stoma. It simply offers space for choice, connection, and self-expression. Some stoma names will stick. Others won’t. Some may only be whispered in private, while others are worn like a badge of resilience or pride.

What matters most isn’t whether you call your stoma Stanley or Scooby-Poo or nothing at all. It’s that you get to choose. That even after illness and surgery—even after everything—you get to choose how your story goes.

References

Cook, J., & Hatton, J. (2018). Giving a stoma a name: A mixed-methods study of naming habits and attitudes among ostomates. Gastrointestinal Nursing, 16(7). https://doi.org/10.12968/gasn.2018.16.7.28

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

Simpson, E., Pourshahidi, K., Davis, J., Slevin, M., Lawther, R., O’Connor, G., Porrett, T., Marley, J., & Gill, C. (2023). Living with and without an intestinal stoma: Factors that promote psychological well-being and self-care: A cross-sectional study. Nursing open, 10(12), 7811–7825. https://doi.org/10.1002/nop2.2030

 

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.

 

Maintaining Nutrition and Hydration in the Management of Short Bowel Syndrome

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Part II of a Two-Part Series featuring Emily Rubin MPH, RD, LDN, Thomas Jefferson University Hospital

Earlier this year, I shared the first part of this two-part series on maintaining nutrition and hydration in people living with short bowel syndrome (SBS) and ostomies (e.g., ileostomies or jejunostomies). In Part I, I talked about managing “Output Consistency” – including thickening or thinning out stools, as well as managing stool acidity – with a focus on diet and nutrition. This article addresses hydration considerations, including signs and symptoms of dehydration in people with SBS and rehydration strategies.

Both articles reflect my own clinical experiences, including more than two decades at the Thomas Jefferson University Hospital in Philadelphia where I am the Director of Clinical Nutrition and Lead Clinical Dietitian for the Division of Gastroenterology and Hepatology. These articles are not intended as medical advice. Please contact your doctor if you are experiencing high output, symptoms of dehydration or any other health-related concerns.

As I mentioned in the first part of this series, SBS is a serious and chronic malabsorption disorder that occurs when parts of the intestine are removed surgically or due to injury. The remaining intestine may not be able to absorb enough nutrients from food and drink. When this happens, people with SBS may be at increased risk of malnutrition, dehydration, electrolyte disturbances and/or diarrhea (increased output). I believe that patient education is critical and I am dedicated to teaching my SBS patients about what to expect in terms of stool/ostomy output, along with the risks and symptoms of dehydration. I am proud to share my clinical experience in this article.

Click here to learn more about SBS.

MANAGING HYDRATION AND RECOGNIZING THE SIGNS OF DEHYDRATION

A 60-year-old male patient with an ileostomy and approximately 80 cm of remaining small intestine was experiencing increased stoma output (about 2.5 L/day), resulting in frequent watery stools. He reported, “When I drink large amounts of water, I feel fatigued, dizzy, and I have muscle cramps!”

Contributing Factors:

  • Experiencing High-Output Stoma: During my consultation with the patient, I explained that excess fluid loss from his stoma led to depletion of electrolytes (sodium, potassium, magnesium), which can cause some of the symptoms that he reported.
  • Drinking Hypotonic Fluids: I shared with the patient that drinking hypotonic fluids, including plain water, can actually worsen dehydration by increasing ostomy outputs and making fluid and electrolyte disturbances worse. Hypotonic fluids are less concentrated than that of the fluids in the body. In addition to water, these types of fluids include plain, unsweetened tea, black coffee and sugar-free sodas.
  • Diet Low in Complex Carbohydrates: When the patient said that he consumes simple sugars and high-fat foods, I told him that these food choices draw excess water into the bowel, increasing stool output and worsening dehydration. Concentrated sweets, such as candy, cookies and cakes, as well as sweetened beverages like soda, juice and lemonade are all examples of simple sugars.

Understanding Stoma Output Levels

For people living with an ostomy, including those with SBS, I believe that understanding normal output levels is important for managing health. Typically, an ileostomy (post-op) produces around ~750mL per day, although output can be 1200mL or more per day initially. A jejunostomy, on the other hand, can produce significantly more—up to 6 liters per day. In contrast, a colostomy produces between 200-600mL daily. I tell my patients that it is important for the body to make at least 1000-1200mL of urine each day to protect the kidneys.

A high-output stoma occurs when output exceeds ~2 liters per day. This can lead to dehydration and the loss of essential minerals like sodium and magnesium, which are critical for overall health. For people with SBS, high stool output can significantly increase the risk of sodium depletion, with potential losses reaching up to 2430 mg per liter of output. I tell my patients who are experiencing high stool output and symptoms of low sodium, such as unexplained weight loss and fatigue, to contact their doctor.

Restricting Intake of Hypotonic Fluids

When I see patients with SBS who are experiencing high-output stoma in my clinical practice, I advise them to restrict the intake of hypotonic fluids like water, tea, black coffee, and sugar-free sodas. These fluids pull sodium (salt) into the small bowel, and bring water along with it, leading to increased stool outputs. In people with SBS, this can exacerbate fluid and electrolyte imbalances due to the lack of absorptive surface area for both salt and water in the remaining bowel. Drinking more water can worsen the condition by creating a cycle of increased ostomy outputs, associated dehydration and thirst for more water. Continue reading for rehydration options included in this article.

Dietary Factors Contributing to Dehydration

Foods that are low in complex carbohydrates and high in sugar can draw water into the gastrointestinal tract. These, too, can worsen stool output and cause fluid and nutrient losses for people with SBS.  I have seen firsthand in my patients that choosing complex carbohydrates, like white rice, potatoes, pasta, bread and bananas can help manage stoma output and improve nutrient absorption. These carbohydrates are easier to digest and absorb compared to simple sugars.

RECOGNIZING THE SIGNS OF DEHYDRATION

Did you know there are relatively easy ways to track hydration levels?

Urine Color

I tell my patients that monitoring their urine color can be a relatively easy yet effective way to keep tabs on their hydration levels. If the urine is darker than a pale yellow, it might suggest that the body is holding onto water rather than getting rid of it properly. Clear or light, yellow-colored urine reflects hydration. Darker shades of urine could signify dehydration.

Other signs of dehydration include:

  • Rapid weight loss
  • Higher stool output than total fluid intake
  • Less-frequent urination
  • Fatigue
  • Lightheadedness/Dizziness when standing
  • Dry mouth
  • Thirst

I tell my patients to consult their doctor if stool output increases, urine output decreases and they notice signs of dehydration.

Water-Tracking Apps

I have encouraged many of my SBS patients to set hydration reminders or alarms on their mobile phones. I have also suggested trying out water-tracking applications (or “Apps”). There are some water-tracking Apps that offer gentle hydration-related nudges throughout the day. Some Apps can help set goals and hydration-tracking progress. There’s even an App that lets users grow a virtual plant by staying hydrated! Searching for “water tracker” in an “App” store on your mobile device, tablet or desktop computer should bring up several options.

REHYDRATION

Did you know that Oral Rehydration Solutions are different than Sports Drinks?

Oral Rehydration Solutions (ORS)

When my patients with SBS are experiencing high output stomas leading to dehydration, I often try to incorporate Oral Rehydration Solutions (ORS) into their rehydration plans. ORS have a specific combination of sodium, carbohydrate and water in a special ratio that can enhance fluid absorption across the small bowel wall, even when the patient is experiencing diarrhea. In many of my SBS patients, I’ve seen this tailored blend help the body absorb those electrolytes like a sponge. However, ORS can be difficult for some people, because of the salty taste. Sometimes people find it helpful to make ORS into ice cubes or popsicles. Sugar-free flavoring can also be added to help improve the taste of the ORS.

Patients have asked me why they can’t simply buy Sports Drinks – such as basic electrolyte drinks – to rehydrate themselves. While Sports Drinks do contain electrolytes like sodium and potassium, as well as sugar, they are not ideal for SBS patients for effective rehydration. For example, they often have too much sugar and not enough salt. It is the special ratio of sodium, carbohydrate and water that can help with fluid absorption across the small bowel wall.

You can make your own ORS at home. Download a free-of-charge ORS recipe book here:

https://shortbowelsyndrome.com/Content/pdf/Recipe_Book_DIGITAL.pdf

If you are living with or caring for someone with SBS, I hope that the information that I have shared in this two-part article series helps empower you to bring questions about nutrition and hydration to your healthcare team. Consistent communication is critically important, and I encourage you to bring any concerns to your doctor, nutritionist, dietitian or another member of your SBS healthcare team.

Sometimes it can be challenging to find a healthcare provider who treats rare GI conditions like SBS. To check if there is a medical provider with SBS experience in your local area, visit https://shortbowelsyndrome.com/find-a-provider.

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Emily Rubin MPH, RD, LDN is the Director of Clinical Dietetics, Clinical Dietitian for Division of Gastroenterology and Hepatology at Thomas Jefferson University Hospital in Philadelphia. In addition to her extensive clinical work, her expertise and insights in the areas of diet and nutrition have been featured in numerous online and broadcast media outlets.

 

 

This article was created by Takeda.

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

US-NON-11817v1.0 03/25

4 things everyone should know about ostomy bags

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You’ve heard the myths about ostomy bags. They’re smelly. Leaky. A dreaded last resort no one would ever choose.

These myths—old, untrue, and stubborn—keep stigma alive. They tell a story that says ostomy bags are something to hide. Something to be ashamed of. Something to avoid or pity. Fueling careless jokes and bleak portrayals, the myths strip away the complexity of ostomy life and reduce it to a sad, lonely struggle.

But ostomy bags are not tragedies. They are not cheap punchlines or secrets to carry in shame. For 725,000 to 1 million people in the United States alone, ostomies are lifelines—tools of survival and symbols of strength. Ostomies make it possible for people to keep living when illness, injury, or pain have tried to take that away.

It’s time to change the conversation. Here are four things everyone should know about ostomy bags and the people wearing them.

1) Myth: An ostomy is a worst-case scenario.
Truth: An ostomy may save and improve lives in ways people don’t often expect.

Ostomy surgery is often framed as a tragedy. Some say they’d rather die than have one. Others insist they could never live like that. Others still tilt their heads with misplaced sympathy: I’m so sorry you have to wear that. Is it temporary?

Underneath these comments is the unspoken belief that an ostomy is a fate so grim, it should be avoided at all costs.

But here’s what people don’t see: An ostomy can give life back. For so many, it means meals without pain or fear. Days without the clench of needing a bathroom now. The relief of a body no longer ruled by urgency, accidents, and the constant worry that public outings will end in embarrassment.

For those with Crohn’s disease or ulcerative colitis, an ostomy may be what breaks the relentless cycle of flares, medications, and hospital stays. For those with colorectal or bladder cancer, it can be a turning point in removing disease and reclaiming the body. For these and so many other people—those with diverticulitis, traumatic injuries, congenital conditions—an ostomy can be a doorway to fully living.

This isn’t about pretending that life with an ostomy is perfect. It’s about telling the whole truth. Yes, an ostomy can change things. Yes, there may be moments of frustration, doubt, or grief. But for so many ostomates, there is also freedom, relief, and possibility.

And that is anything but the worst.

2) Myth: Ostomies are only for older people.
Truth: Ostomies are for anyone who needs them, from babies to the elderly.

When people hear the word ostomy, they may picture this: an older person in a hospital gown, frail and confined to a bed. But ostomies aren’t just for old age, and they certainly aren’t just for hospitals.

They are for living—for anyone whose body needs a different way forward.

Ostomies are for:

  • The baby born with a condition requiring immediate intervention
  • The toddler whose parents mastered ostomy bag changes before potty training
  • The child with a backpack of homework, snacks, and ostomy supplies
  • The teenager balancing WOC appointments with school, friendships, and first dates
  • The new parent learning to care for a baby while relearning to care for themselves
  • The professional navigating a medical curveball at the height of their career
  • The grandparent chasing after grandkids, refusing to slow down
  • And yes, older individuals who have lived through it all

Ostomies belong to every age and every stage of life. When we widen the lens, we find them at playgrounds and in boardrooms, at first dates and family vacations, in classrooms and grocery store aisles.

We create space for anyone with an ostomy who wonders if there’s someone out there like them. We show them the truth: no matter their age, no matter where they are in life, they are not alone.

3) Myth: No one will love you with an ostomy.
Truth: Love is so much bigger than a bag.

Many ostomates fear they’ll never find someone who sees beyond their ostomy bag. The questions linger between swipes, dates, and hesitant disclosures. When do I bring it up? How will they react? They wonder if the moment they say ostomy bag, there will be an awkward pause and silent calculation that it’s just too much.

Some wish they had fallen in love before surgery—so they wouldn’t have to explain. So the love would already be there, solid and secure. So they wouldn’t have to brace for the moment someone sees the bag and decides whether they can “handle it.”

Even those in relationships may wrestle with doubt. Will my partner still want me? Still find me attractive? Can I trust when they say that this doesn’t change anything?

An ostomy adds another layer to intimacy and relationships. Some potential partners do flinch. Some hesitate. Some don’t know what to say, or they say the wrong thing, or they give a look that stings. (This is stigma in action.)

But love—the kind worth having—is not that fragile. It is not scared of an ostomy bag. And there’s more of that love out there than people think.

People find love at every stage of their ostomy journey. Some before surgery, with partners who sit beside them in hospital rooms, proving that for better or worse isn’t just a phrase. Others after, when they are finally well enough to show up fully in their lives—embracing a love that doesn’t come despite the ostomy, but because of the space it created for healing and wholeness.

Bag or no bag, love is about connection—truly seeing and being seen. And the partners of ostomates prove every day that it’s actually not about looking past the bag at all. They see the bag. They honor it. Not as an obstacle, but as a mark of their partner’s resilience, vulnerability, courage, and strength.

And those are qualities worth loving.

4) Myth: You can tell if someone has an ostomy bag.
Truth: With the right products and care, ostomies often go unnoticed.

People with ostomies are everywhere: at work, at the gym, on dates, in line at the coffee shop. Chances are, most people have met someone with an ostomy without ever realizing it. They’ve stood next to them, shook their hands, shared a laugh—and never knew.

That’s because ostomy bags are not what people think. They’re not open or exposed. They’re not constantly leaking odor or waste in public. In fact, many ostomy bags don’t even resemble the crinkly, medical-looking pouches of the past. Today, there are options designed for discretion and comfort. Sight, sound, scent? All covered. Most of the time, an ostomy is invisible unless the person wearing it chooses to share.

For those who do experience leakage or complications with their ostomy, or just prefer an extra layer of discretion, there are options. A change in products or routine, a wardrobe shift—adjustments that restore comfort and control because people with ostomies aren’t meant to live in constant worry. If someone wants discretion, it can be theirs.

The truth about ostomy myths

Ostomy myths don’t just mislead; they shape lives. They seep into conversations, assumptions, and even the way people see themselves. They chip away at confidence, making it harder for those with ostomies to fully show up in their lives. They feed fear in those facing surgery, delaying care and prolonging suffering. And for everyone else, they can reinforce the dangerous idea that some bodies are more worthy than others.

An ostomy bag doesn’t shrink a person’s worth. It doesn’t make them any less strong, less capable, or less deserving of love and respect.

Because a person with an ostomy is not their bag. No matter who they are—no matter when, how, or why they got their ostomy—they are so much more.

 

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/

Author’s note: This blog primarily uses the term “ostomy bag” to reflect how the author describes her own pouching system—a functional, everyday part of her life. While the intent is to reclaim the word “bag” from its negative associations, we recognize that others advocate for alternative terms like “ostomy pouch.” Whenever possible, please ask those with ostomies about the language they prefer. 

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.

 

Maintaining Nutrition and Hydration in the Management of Short Bowel Syndrome

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Part 1 of a Two-Part Series featuring Emily Rubin MPH, RD, LDN, Thomas Jefferson University Hospital

With over two decades of experience at the Thomas Jefferson University Hospital Division of Gastroenterology and Hepatology in Philadelphia, I am the Director of Clinical Nutrition and Lead Clinical Dietitian for the Division of Gastroenterology and Hepatology. In this role, and over the course of my career, I have provided comprehensive nutrition education and medical management to patients of all ages living with a wide range of gastrointestinal diseases, including short bowel syndrome (SBS).

SBS is a serious and chronic malabsorption disorder that occurs when parts of the intestine are removed surgically or due to injury. The remaining intestine may not be able to absorb enough nutrients from food and drink. When this happens, people with SBS may be at increased risk of malnutrition, dehydration, electrolyte disturbances and/or diarrhea (increased output). I am passionate about educating patients and their family care partners about the roles of nutrition and hydration in the management of gastrointestinal diseases like SBS, and proud to share my clinical experience.

To learn more about SBS, click here. To join the community and talk to others who are living with SBS, check out https://www.facebook.com/TakedaSBS/.

The Nutritionist’s/Dietitian’s Role in Multidisciplinary SBS Care

Managing SBS can be complex, but working with experienced health care providers to establish a set of management goals that are individualized to the distinct needs of the patient can be an important part of self-advocacy. Since nutrition and hydration goals are important parts of an SBS management plan, a nutritionist or dietitian will often be included in an SBS patient’s multidisciplinary health care team.

 

Here at the Thomas Jefferson University Hospital Division of Gastroenterology and Hepatology, we see patients for a variety of reasons. In this two-part series, I am going to share my own clinical experience on two topics that come up frequently with our patients who are living with SBS and ostomies (e.g., ileostomies or jejunostomies). This article will address “Output Consistency” – including thickening or thinning out stools, as well as managing stool acidity. The second article in this series will focus on “Hydration” – including common causes of dehydration in people with SBS, as well as rehydration tips, including Oral Rehydration Solutions (ORS). That article will post in the coming months.

Managing Output Consistency

I see a 35-year-old female patient with a history of Crohn’s disease who underwent her third intestinal resection, resulting in short bowel syndrome (SBS) and an ileostomy. Since the surgery, she has struggled with managing high stoma output and persistent diarrhea and weight loss of 10 pounds over the past four months. She states, “Every time I eat too much fat, it makes my diarrhea worse, but I need to gain weight, so I am not sure what to eat?”

Considerations:

  • Weight Loss: Patient requires a diet that promotes weight gain without increasing stool output.
  • Dietary Concerns: She noticed that consuming high-fat foods exacerbates her diarrhea and stoma output; she needs to gain weight but is uncertain about what foods to eat that won’t worsen her symptoms.
  • Fluid and Electrolyte Management: Maintaining hydration and electrolyte balance is crucial to prevent dehydration due to her high-output stoma.

I stress to my patients that diet therapy is key for getting proper nutrition and for managing symptoms like diarrhea, which is often the biggest challenge for my SBS patients. I typically start with these important diet factors for SBS output consistency: I educate my patients about how to include Fat, Carbohydrates/ Sugar, and Fiber in their diets.

FAT

Did you know that eating too much fat, including fried or creamed based foods, can make diarrhea and output worse and cause nutrient and fluid loss?

Fat provides important calories but is a hard nutrient to digest. Limiting fat intake is most important in my SBS patients who have a remaining colon, severe steatorrhea (poorly digesting and absorbing fats) and/or a history of kidney oxalate stones. In some cases, I advise them to limit their fat to less than 30% of their daily calories and spread fat intake evenly throughout the day to help their bodies digest it better. When it comes to preparing foods such as fried or creamy based foods, I tell them to incorporate small amounts of easily digestible fats such as medium-chain triglycerides (MCTs) found in coconut oil. I have seen that these are better absorbed in my SBS patients.

I also educate my patients about avoiding High Fat Foods, such as fatty meats like beef, lamb, pork, and skin-on chicken and poultry. Dairy foods like whole milk, soft cheese, ice cream, and butter contain lactose. Symptoms of lactose intolerance are often dose-dependent, and some of my SBS patients can tolerate some dairy products, especially if they are spread over the course of the day.

I recommend that my patients incorporate healthier fat choices, such as fatty fish: salmon, tuna, olive oil, avocado and nut butters.

CARBOHYDRATES / SUGAR

Did you know that drinking 100% fruit juice can increase stool output and dehydration?

When my patients eat concentrated sweets, including candy (e.g., jellybeans or gummy bears), cookies, cakes, and drink sweetened beverages (e.g., soda, juice, lemonade), they draw excess water into the bowel, increasing stool output and exacerbating dehydration. Instead, I tell them to choose complex carbohydrates, like white rice, potatoes, pasta, bread and bananas, to help manage stoma output and improve nutrient absorption. These carbohydrates are easier to digest and absorb compared to simple sugars. I have seen that reducing stool volume and minimizing fluid loss can help my SBS patients maintain better hydration and nutrient balance.

FIBER

Did you know that incorporating soluble fiber like psyllium husk and oatmeal in the diet may improve stool consistency?

Fiber is often a scary word for my SBS patients. Soluble fiber found in oats, barley, citrus fruits, carrots, sweet potatoes, ground flaxseed, and psyllium husk can help to slow gastric emptying, potentially improving diarrhea and stabilizing bowel movements. Fiber dissolves in water, forming a gel-like consistency, which helps slow digestion and manage diarrhea. I tell my patients to focus on soluble fiber to improve stool consistency, especially if a colon segment remains. I encourage a moderate intake of soluble fiber to be spread throughout the day to help my SBS patients manage stool output and enhance fluid retention.

Although insoluble fiber, found in whole wheat, brown rice, bran, cauliflower, broccoli and dark leafy greens, may help thicken stool consistency, it can lead to increased loss of minerals and fluids, exacerbating dehydration. I frequently advise my SBS patients to avoid it.

I often remind my patients that they should not prioritize fiber over meeting their basic nutrient needs, especially for patients with poor appetite or requiring weight gain.

 

Additional nutrition tips I often share with my SBS patients, include:

Small, Frequent Meals: Eating smaller meals throughout the day can help manage symptoms and improve nutrient absorption.

Avoidance of Certain Foods with A Dietitian: Some foods might exacerbate symptoms, so identifying and avoiding these can be beneficial. A dietitian can help identify nutrient dense foods to include in an SBS diet to best manage symptoms based on the length of the patient’s remaining bowel, to help maintain hydration and to create a personalized nutrition plan.

Consistent Communication with Health Care Providers: I can’t stress to my patients often enough that they should always inform their doctor or dietitian about any changes to their diet or hydration plan. The patient’s health care team can adjust the patient’s treatment plan as needed to ensure they’re getting the right balance of nutrients and fluids.

Although there is no “one-size-fits-all” diet for SBS, your own health care team will work with you to develop nutrition and hydration goals that are specific to your needs. Diet therapy focuses on controlled fluid intake, nutrient absorption, and maintaining electrolyte balance to manage high-output stomas effectively. Again, it is important to tell your doctor and dietitian about any significant changes to your diet and output and identify signs of dehydration. A key aspect of nutrition and hydration management in SBS is educating patients on balancing nutrients, fluids and electrolytes.

To learn more about managing your SBS, visit https://shortbowelsyndrome.com/sbs-management.

Watch for Part 2 of this two-part series “Maintaining Nutrition and Hydration in the Management of Short Bowel Syndrome (SBS)” in the coming months!

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Emily Rubin MPH, RD, LDN is the Director of Clinical Dietetics, Clinical Dietitian for Division of Gastroenterology and Hepatology at Thomas Jefferson University Hospital in Philadelphia. In addition to her extensive clinical work, her expertise and insights in the areas of diet and nutrition have been featured in numerous online and broadcast media outlets.

This article was created by Takeda.

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

US-NON-11724v2.0 01/25

Christmas with an ostomy, all wrapped up

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By Convatec

We want to help everyone in our ostomy community have a wonderful holiday.

So, we’ve put together this guide to share our top tips. In our 12 ways of Christmas, you’ll find advice about everything from stocking up on supplies to eating and drinking in moderation. If you have a child with an ostomy, you’ll find tips on how to prepare for Christmas day. You’ll also find our Accessories Wish List, featuring our most popular accessories.

12 Ways of Christmas

The countdown to the big day has begun. To help you prepare, we’ve put together our 12 ways of Christmas. Share your tips on our social media channels using the hashtag #OstomyHoliday

1. Stocking up

Now’s the time to order more ostomy products if you haven’t already done so.

2. Get wrapping and packing

If you plan to travel, make a checklist of everything you need to pack or better still, pack an overnight bag now.

3. Eat, drink and be moderate

Avoid the risk of bloating or even a blockage by enjoying your favorite foods in moderation.

4. It’s all about the bubbles

Remember champagne, sodas and other carbonated beverages can cause ballooning and indigestion.

Check out our top ostomy nutrition tips here

5. Add Accessories to your wish list

The holiday break is a great time to give ostomy accessories a try. If you’ve got an ileostomy, give Diamonds™ Gelling Sachets a try – just pop one in your pouch to thicken your output and reduce gas.

6. Beware of what’s hidden in the dessert

If you’re one of the few who enjoy fruitcake, be aware of the ingredients and which might cause irritation.

7. Marshmallows aren’t just for S’mores

Many people with an ileostomy find that marshmallows are a great way to quickly thicken output.

8. Enjoy it

Sometimes the holidays can be stressful, even without an ostomy! Being knowledgeable and prepared can ensure you have a great time.

9. Dreaming of holiday food?

From a vegetable overload to rich, spicy foods, the holiday menu is packed full of potentially gas-inducing foods. Many people find they can enjoy these foods in moderation. And remember, if you’re at someone else’s house, it’s not rude to refuse.

10. Don’t expect the Santa Express…

If you’re traveling by land, air or sea, there’s likely to be a limited service. So, it’s a good idea to keep a supply of pouches and supplies within easy reach, just in case.

Check out our top travel tips for ostomates here

11. Stay hydrated

It’s tempting to hope that all that soda and eggnog is keeping you hydrated, but in reality, the opposite is more likely to be true. Alcohol is a diuretic, so if you decide to indulge a little, make sure to also drink plenty of water.

12. Take it easy the day after

Whatever day you celebrate on, it can be hugely fun, but also tiring. So be sure to plan to rest the day after.

Let’s make it all about stockings, not pouches: holiday tips for children with an ostomy

We all want our kids to wake up on Christmas morning (not too early!) thinking about their stockings, not their ostomy pouches. Best of all, there are things we can do as parents to help.

Plan ahead

You’ve already got so many things to think about, so it’s a good idea to make a checklist. Have you got enough supplies? If you’re going away, have you packed a bag?

Eat ahead

It can be a good idea to give your child bland food a day or so before a big holiday feast, to compensate for any overload the day of.

Sleep easy on Christmas Eve

You’re likely to already have an established bedtime routine. If so, try making it a bit earlier so you and your child are not rushed. Remember, to minimize the risk of leakages, avoid eating too close to bedtime and make sure the pouch is completely empty.

Wrap the mattress in a plastic sheet

If you’re not already doing so, get wrapping! A plastic sheet is easy to clean, avoiding any unnecessary upset.

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.

Managing the Challenges of Pancaking

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By Janet Stoia Davis RN CWOCN FCN and Janice C. Colwell APRN, CWOCN, FAAN

 

What is pancaking?

For a person with a fecal stoma, emptying an ostomy pouch can at times be slow, messy and frustrating—especially if they find that stool is stuck at the top of the pouch around the stoma. When stool is thick and dry, a phenomenon called pancaking may occur. Thick stool exiting the stoma that does not fall to the bottom of the pouch can form into the shape of a pancake at the top of the pouch, hence the term “pancaking”.

Why can pancaking be a problem?

Thick pasty stool can remain over the stoma, making its way under the pouch adhesive and potentially lifting the adhesive/pouch. When this occurs, the stool contacts the skin around the stoma causing leakage. This leakage can damage the peristomal skin, lift the pouch from the skin, and result in odor and seepage of stool onto clothing.

Who is at risk for pancaking?

Anyone with a fecal stoma can experience pancaking, but it is more common among people with a colostomy. Colostomies are created in the colon or large intestine (they are given two, names which confuses people, but they are one and the same). The colon’s job is to absorb or “suck” water out of the intestinal contents, and as stool travels through the colon it becomes thicker. By the time it reaches the final section of colon on the left side of the body, it can be pasty and dry. Many colostomies are created on the left side of colon, making the stool pasty, dry, and thick. When stool is expelled from the stoma, it may not move away from the stoma, getting stuck at the top of the pouch leading to pancaking.

Individuals with ileostomies can also experience the challenges of pancaking, but it is less common and will depend on the consistency of their stool. In some cases, form-fitting clothes may constrict the pouch and flatten the stool, preventing it from falling to the bottom of the pouch.

What can be done to decrease instances of pancaking?

For some people, increasing fluid intake can make the stool less thick and pasty, which may allow it to travel away from the stoma and drop to the bottom of the pouch. Stool softeners can be taken orally to increase the moisture content of the stool which may also facilitate the movement of the stool into the bottom of the pouch. If an individual’s clothing fits snugly over the pouch, wearing a looser fit may also help decrease the incidence of pancaking.

Some pouching systems have a built-in filter that helps air escape the pouch and deodorizes the gas. However, if the filter removes all air from the pouch, it may create a suctioned environment that makes it difficult for stool to slide to the bottom. A sticker for the gas filter (provided with some pouches for underwater use) or a piece of tape over the filter may help avoid the vacuum effect in the pouch. This will vary by individual.

The use of an in-pouch lubricant can facilitate the movement of stool away from the stoma and into the bottom of the pouch. These lubricants can be applied to the inside of the pouch one or more times per day. This creates a slick surface on the inner lining of the pouch to help thick stool slide to the bottom of the pouch and prevent it from pancaking over the stoma. Lubricants can be used in both drainable and closed end pouches.

In addition to pancaking reduction, a lubricant may also make pouch empties faster and cleaner. Several companies make lubricant that can be used in the pouch. A new company, Revel, has placed special emphasis on pancaking and drain time reduction. Revel created a new type of lubricant using a technology called LiquiGlide that creates a long-lasting slippery surface on the inside of the pouch. Their product, It’s in the Bag, can last up to 24 hours, alleviate pancaking, and decrease pouch drain time. This product has been used by people with a fecal stoma who reported a decrease pancaking and emptying time as well as leaving behind an overall cleaner pouch.

Revel is a proud sponsor of United Ostomy Associations of America and dedicated to creating products that make significant improvements in the lives of ostomates. To learn more, visit https://revelostomy.com/

 

Editor’s note: This blog is from one of our digital sponsors, Revel. 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.

Show Your Short Bowel Syndrome Pride During SBS Awareness Month in August: Digital Sponsor, Takeda, Launches a New SBS GIPHY Page

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Educating yourself and engaging with others can help you take ownership of your Short Bowel Syndrome (SBS) care. We hope the following resources will help you feel more informed, empowered and connected to others this SBS Awareness Month and throughout the year.

Share your Pride during SBS Awareness Month!

Takeda is excited to share that we recently launched an SBS-dedicated GIPHY channel. Visit www.giphy.com/SBSStrong to find SBS-related stickers and GIFs. You can also search for them via your GIF keyboard wherever you use GIFs – for example, on Instagram, Facebook, WhatsApp, SMS, TikTok, X (Twitter), and more. Here are a few examples from our GIPHY Channel:

Continue reading for informational and support resources for the SBS community. Get started here and learn more about SBS.

Finding an SBS Specialist and Knowing What Questions to Ask

Short bowel syndrome is a serious and chronic malabsorption disorder that occurs when parts of the intestine are removed surgically and the remaining intestine may not be able to absorb enough nutrients from food and drink. Certain new symptoms that arise after intestinal surgery may mean it is time to connect with an SBS specialist.

Because SBS is rare, it can be difficult to find a healthcare provider (HCP) who has experience managing and treating SBS. We developed the HCP Locator Tool to help identify HCPs in local areas around the United States who have knowledge and experience in managing this rare condition. If you haven’t yet connected with an SBS provider, you can check this link to see if there is a medical provider with SBS experience in your local area.

Not all people who have parts of their intestine surgically removed will be diagnosed with SBS. Knowing what symptoms to look for after intestinal surgery may help reduce the time to an SBS diagnosis. Click here for a list of SBS symptoms that may arise after surgery.

Once you have identified a healthcare provider with SBS experience, it can also be challenging to know what questions to ask. Take our Gut Check Questionnaire to help prepare to speak with your doctor.

Establishing SBS Management Goals, Including Maintaining Essential Nutrition and Hydration

Managing short bowel syndrome can be complex, but working with your healthcare team to establish a set of management goals that are individualized to your distinct needs can be an important part of self-advocacy. Some goals might include:

  • Improving intestinal adaptation following resection surgery
  • Weaning off of the parenteral support that some people with SBS require after surgery in order to meet their nutritional needs
  • Making adjustments to daily tasks (e.g., using the bathroom, sleeping, etc.) in a way that can potentially improve day-to-day routines

You can learn about managing SBS here.

Although there is no “one-size-fits-all” SBS diet, your doctor will work with you to develop nutrition and hydration goals that are specific to your needs. This downloadable PDF illustrates how each section of the intestinal tract is responsible for specific functions that help absorb nutrients and fluids to promote digestion.

Staying adequately hydrated is critical for people with SBS. Read important information about the signs of dehydration and tips about staying hydrated in this digital booklet featuring Oral Rehydration Solution (ORS) recipes.

Connecting with Others

Living with a rare and serious digestive disorder like SBS can be isolating. As part of our continued commitment to the SBS community, we are always looking for ways to help people living with this condition to connect with one another. We are proud to provide people with SBS who are reliant on parenteral support the opportunity to connect with an SBS Mentor through our SBS Connect program. SBS Mentors are available to share their own experiences with the condition and its treatment.

There are a number of online and live communities where you can connect with others living with SBS. For example, you can find our SBS-specific Facebook community at https://www.facebook.com/TakedaSBS/.

And, again, you can now include SBS-specific stickers and animated GIFs in your online conversations. Bookmark www.giphy.com/SBSStrong and watch for new content in the months to come.

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

Where Should I Purchase my Ostomy Products?

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Quick Reference Guide for Ordering Supplies and Insurance Reimbursement

• Ostomy supplies are special products and may not be available at your local drugstore.
• Contact your insurance provider to understand what your insurance plan covers and pays for ostomy supplies, and where you can purchase and order supplies (usually through a supplier or retailer).
• Connect with a trusted retail supplier for help understanding your insurance allowables. With your permission, they can even contact your insurance on your behalf.
• Do you need help finding a supplier for your ostomy products? Call the me+ team to learn more about your options (1-800-422-8811).

Still not sure which ostomy products to buy?

With me+™, you never have to figure it out alone.

Navigating and maximizing your health insurance, finding a retailer, and feeling confident in your ostomy supply purchases may feel overwhelming. The me+ support team is available so that you don’t have to figure it out alone.

You have the right to choose the Retail Supplier that best meets YOUR needs.

Convatec works with a group of Preferred Retail Suppliers to provide you with excellent customer service and dependable supply delivery. Our Preferred Retail Suppliers will:

  • Help you manage product orders in line with your insurance
  • Facilitate your insurance billing process to ensure you get the proper reimbursement for Medicare, Medicaid or private insurance
  • Help you select the right products to suit your personal needs
  • Ship your products straight to your home in discreet packaging
  • Send you timely reorder reminders
  • Protect your privacy in accordance with U.S. HIPAA guidelines

To learn more about Preferred Retail Suppliers that work with your insurance, contact our me+ support team at 1-800-422-8811, cic@convatec.com or fill out this form.

My Ostomy Journey App

Fit is so important, especially when it comes to your body and the ostomy products you’re using.

We know that there is no one-size-fits-all product that works for everybody or every stoma. Download the My Ostomy Journey app to discover and sample products to fit your body by answering just a few simple questions. It’s free to download and works on either a phone or tablet. Download now to get started today!

The reimbursement information provided by Convatec is intended to provide general information relevant to coding and reimbursement of Convatec’s products only. Coverage and payment policies for the same insurer can vary from one region to another and may change from time to time because of ongoing changes in government and insurance industry rules and regulations. Therefore, please confirm HCPCS Codes with your local DME-MAC, private insurer, or Medicaid agency before processing claims. Convatec does not guarantee coverage or payment of its products listed herein.

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.