How an ostomy can bring couples closer together

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While managing a serious illness and ostomy surgery can be a brutal reality, many couples find the experience transforms their relationships for the better, replacing trivial arguments with deep appreciation and forging an unbreakable bond built on acceptance.

By H. Dennis Beaver, Esq.

Suppose we were having a cup of coffee in my office, and I asked you, “Can you think of something really good about having bladder cancer?” You would probably look at me as if I had a screw loose.

Well, the response I’ve received from couples who read our recent article We’ve Survived Bladder Cancer, But Live With the Effects of Surgery. Tough Love Isn’t What We Need is proof that something indeed very good can result despite the tragedy of experiencing this life-altering disease.

Within hours of the article being online, emails and phone calls arrived from people affected by bladder cancer, including the spouses of attorneys (lots of attorneys), business executives, retired military, law enforcement — people used to being in charge — who had the same message:

Having bladder cancer made them — or me, depending on who reached out — a better spouse. The readers talked about how their spouse stopped being their work self at home, arguing over little, stupid, petty things. They were more appreciative of their spouse than they had been in years.

“Mr. Beaver,” one woman said, “bladder cancer brought us closer, and we both had a lot to learn. Would you please address these important issues?”

So I spoke with Dr. Patricia Pedreira, a postdoctoral associate at Duke University School of Medicine specializing in psycho-oncology. She works with cancer patients and their families, navigating the psychological impact of diagnosis, treatment and survivorship. This is a summary of our interview. (Have a box of Kleenex nearby. I’m glad that I did.)

Bringing couples closer together

The daily realities of living with a urostomy can either drive couples apart or bring them closer together. The difference often comes down to how the partner responds in their spouse’s most vulnerable moments.

High-achieving spouses frequently tell me the same thing: I realized my behavior was hurting my spouse at a time when that was the last thing I wanted to do.

How small things suddenly matter

Bladder cancer recalibrates what’s considered worthy conflict. Couples describe how arguments that used to dominate their relationship (finances, household tasks, who said what) suddenly feel absurdly trivial.

When you’re dealing with the daily reality of an ostomy, who forgot to take out the trash doesn’t register anymore.

Also, small kindnesses become massive. Such as when a spouse keeps extra supplies stocked without being asked. Or warms the bathroom before a pouch change in winter. Or doesn’t wrinkle their nose or look away.

These gestures communicate acceptance and love more powerfully than any words.

Partners also notice what you don’t do. Such as not complaining about middle-of-the-night accidents. Not making a big deal about canceled plans because of not feeling well. What a spouse doesn’t say speaks volumes.

Identity and dignity

Losing bladder function strips away dignity in a way that’s hard to describe if you haven’t experienced it. The person may feel like less of an adult, less of a partner, less attractive, less capable. These feelings are real and valid.

As their spouse, it’s not your job to talk them out of these feelings. It’s to show them through your actions that you still see them as your partner, not a patient. You still find them attractive. You still respect them. You still want to build a life with them.

This means maintaining aspects of your relationship that have nothing to do with cancer or the ostomy.

  • Keep watching your show together
  • Keep your Sunday morning coffee ritual
  • Keep planning for the future
  • Don’t let “bladder cancer patient” become their entire identity in your eyes or in the relationship.

How bladder cancer can strengthen a marriage

Shared vulnerability creates connection. When your spouse responds with compassion instead of disgust at your most vulnerable moments, you realize they aren’t going anywhere. That acceptance builds trust that many couples never experience.

Trivial conflicts disappear. Arguments about money or household tasks feel absurd when you’re dealing with real problems. This clarity leads to less conflict and more appreciation.

You become a team. Managing ostomy care together as a shared challenge creates a genuinely collaborative partnership.

Crisis reveals character. Watching your spouse show up for accidents and breakdowns without resentment shows you who they really are. Many people fall in love all over again.

You stop taking each other for granted. Facing mortality makes couples more present, more grateful and less interested in grudges. When time feels finite, you stop wasting it on pettiness.

The challenges are real and brutal. But many couples find the “bladder cancer experience” strengthened their marriage. They become more honest, more compassionate and more certain of each other.

When to seek professional support

For the person with bladder cancer, watch for signs that your grief and adjustment have shifted into clinical depression or anxiety:

  • Persistent sadness that doesn’t lift even briefly
  • Loss of interest in things that used to bring comfort
  • Pervasive hopelessness
  • Significant changes in sleep or appetite beyond what treatment explains
  • Constant intrusive worry about the ostomy failing or people noticing

For partners, watch for the following in yourself:

  • Resentment that won’t go away
  • Constant irritation with your spouse
  • Avoiding physical closeness
  • Feeling trapped or overwhelmed by caregiver responsibilities

These are signs that you need support.

Mental health care is part of comprehensive cancer care, not a luxury or admission of weakness. Most cancer centers have psycho-oncology services or social workers who can refer you to therapists experienced in helping people adjust to life with an ostomy.

Both patients and caregivers benefit from this support.

Therapy gives you tools to process the grief, anger, fear and adjustment challenges that you can’t get from well-meaning friends or support groups alone.

It’s a space to be honest about how hard the situation is without worrying about burdening anyone.

What I tell couples

You don’t have to be inspirational. Some days, you’ll cope well with the ostomy. Other days, you won’t. Both are okay.

Practice self-compassion. Treat yourself with the same kindness you’d offer a friend navigating this. Don’t beat yourself up for feeling grief, frustration or anger about losing normal bladder function.

These feelings don’t mean you’re weak or ungrateful to be alive. They mean you’re human.

For partners: Don’t beat yourself up for finding the situation difficult. Watching someone you love struggle is painful. Having your life disrupted by middle-of-the-night accidents and medical complications is legitimately difficult. Acknowledging that doesn’t make you selfish.

Find small moments of normalcy and connection even in the hardest stretches:

  • A conversation that has nothing to do with cancer
  • A meal you both enjoy
  • A moment of laughter

Something that reminds you you’re still you, still a couple, still capable of joy even in the middle of something that’s hard to deal with.

If you’re struggling, ask for help. You don’t have to figure this out alone.

Readers can contact Dr. Pedreira at pedreirp@gmail.com. Thank you for sharing about these important issues for both the caregiver and their loved one. 

H. Dennis Beaver, Esq. is in the general practice of law and writes a syndicated newspaper column, You and the Law. Through his column, he offers readers in need of down-to-earth advice his help free of charge. “I know it sounds corny, but I just love to be able to use my education and experience to help, simply to help. When a reader contacts me, it is a gift.” Thanks to the author for sharing his article with UOAA and the ostomy community!

 

 

Finding Bladder Cancer Support Everywhere

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

By Liz Hiles

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

_______________________________________

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

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

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.

Tips for Choosing the Right Ostomy Supplies

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

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

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

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

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

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

Get Professional Help and Sample Supplies

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

Picking an Ostomy Pouching System

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

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

Types of ostomy bags or pouches ileostomy

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

Types of Urostomy Pouches

Pouch Closures

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

    Colostomy Pouch One-Piece Closed End

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

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

Other Pouch Choices

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

Skin Barriers

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

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

Ostomy Accessories

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

Ask an ostomy nurse what may be helpful for you.

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

UOAA’s Ostomy Marketplace Directory

Keeping Track of it All

Know Your Ostomy Supplies Checklist

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

 

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

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

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By Kaylene Hernandez, PT, DPT

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

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

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

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

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

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

What is Abdominal Rehabilitation?

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

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

Understanding How Abdominal Surgery Impacts Your Body

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

Adhesion Formation: The Hidden Challenge

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

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

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

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

Adhesions can lead to:

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

Changes in Posture, Breathing, and Movement Patterns

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

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

The Comprehensive Benefits of Physical Therapy after Abdominal Surgery

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

Physical Benefits

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

Functional Benefits

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

Understanding Hernia Prevention: It’s All About Pressure Management

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

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

Unfortunately, your recent surgical site often becomes that path.

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

Key Strategies for Hernia Prevention

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

Addressing Scar Tissue and Adhesions: A Proactive Approach

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

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

Evidence-Based Scar Management Techniques

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

Restoring Functional Mobility: Beyond Basic Movement

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

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

Personalized Activity Return

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

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

The Core System Connection: Addressing Unexpected Symptoms

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

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

When the Core System Is Disrupted

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

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

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

The Three Phases of Rehabilitation after Abdominal Surgery

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

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

Typical Time in Phase: Days to Weeks

Scar Healing Focus

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

Healthy Bowel and Bladder Habits

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

Safe Body Mechanics

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

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

Typical Time in Phase: Weeks to Months

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

Phase 3: Strengthening and Returning to Functional Mobility

Typical Time in Phase: Months and beyond

Advanced Core Strengthening and Stability Training

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

Your Path Forward

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

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

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

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

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

Citations

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

 

Celebrate World Ostomy Day with UOAA!

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By Jeanine Gleba, UOAA Advocacy Manager and Ed Pfueller, UOAA Communications and Outreach Manager

Each year United Ostomy Associations of America (UOAA) celebrates Ostomy Awareness Day in the United States on the first Saturday of October. Coincidentally, every three years on the first Saturday it is World Ostomy Day. This year we are celebrating World Ostomy Day around the globe on Saturday, October 4, 2025.  The International Ostomy Association determined this year’s theme as “Invisible Disabilities. Visible Support. The Global Unity of Ostomates. The goal of this theme is “Bringing light to uncover the invisible ostomy and create visible support. Fostering conversation, global awareness, and ensuring equity for our communities both locally and globally.” 

UOAA hopes everyone will be part of the “Visible Support” so many people are seeking after surgery. We also recognize that not all people living with an ostomy feel a connection to the  “Invisible Disabilities” theme but we seek to educate all ostomates on their workplace rights and federal ADA protections. Together we can raise positive awareness and smash stigmas to ensure all ostomates are universally accepted and treated equally with dignity and respect.

This year UOAA has named Keely Cat-Wells as this year’s World Ostomy Day Champion. “Being a World Ostomy Day Champion is a huge honour. It’s about using my platform to bring visibility to a community that is too often overlooked, even within the wider disability movement. Having an ostomy has shaped so much of my lived experience, and I know how isolating it can feel when society erases or stigmatizes something so fundamental to your health and survival,” she says.

We’re also excited to announce that UOAA has become members of the Hidden Disabilities: Sunflower Program. Have you seen the Sunflower? This is a global program whose tagline is “Making the invisible visible.” which makes them the perfect partner for this year’s World Ostomy Day! The Sunflower empowers individuals to voluntarily share that they have a non-visible condition and may need additional help, understanding, or simply more time.  Sunflower members iinclude companies such as United Airlines and LEGO and airports around the world. UOAA is working with them to create dedicated ostomy-content on their website. Check out the upcoming Hidden Disabilities Sunflower Conversations Podcast on October 4 where our champion Keely Cat-Wells appears alongside Nate Hadlock, Chair of UOAA’s Patient Advisory Board.

A Special Edition of Ostomy Academy

To kick-off the weekend events and celebrate World Ostomy Day UOAA is partnering with the nonprofit organizations South Asian IBD Alliance (SAIA), Color of Gastrointestinal Illnesses and Cheeky Charity for a special edition Ostomy Academy on Cultural Influences on Ostomy Life on Friday, October 3, 2025 at noon EST. In this conversation, we’ll address the unique challenges people may face within their communities—based on their ethnicity, culture, sexual orientation, or gender—and explore the support systems that can help. Register here.

Find or be the “Visible Support”

Visible ostomy support can come in many forms such as becoming a member of one of UOAA’s 285 Affiliated Support Groups.  Despite assurances from medical professionals, people facing ostomy surgery may feel scared or isolated. There is no substitute for peer support, the visual proof provided by someone who has had similar surgery and learned to live well with an ostomy.

What better “visible support” is there then being an “ostomy friend”? UOAA is proud to partner with Embracing Ostomy Life in the Team HOPE program. Team HOPE matches volunteer veteran/established people living with an ostomy, who have completed UOAA’s online “Ostomy Friends” training course, with new ostomates. Connections are made based on factors like gender, type of ostomy, lifestyle, and age. Get involved in this person-to-person support to help new ostomates achieve an optimal physical, mental and social recovery.

Another great form of visible ostomy support is attending the festive atmosphere of one of our eight Run for Resilience Ostomy 5k events around the country or join the Virtual Ostomy 5k in your corner of the world! This year’s World Ostomy Day T-Shirt is still available to virtual participants who sign-up by September 23rd! These events are also a critical fundraiser for the services and programs provided by UOAA so even if you don’t want to walk, roll, or run, consider cheering others on and a donation to celebrate the resilience of all people living with an ostomy.

Ostomy companies are another visible form of support for the community and their Ostomy 5k event sponsorships help off-set costs and make these gatherings possible. Many will have reps on hand to share products and talk with attendees. See the World Ostomy Day page for all the ways sponsors are celebrating online and at events.

Share your “Visible Support” on Social Media

Give thanks for your Support! Use social media to highlight the people, groups, orgs or resources that have supported you in life with an ostomy. Use Hashtags like #WorldOstomyDay #VisibleSupport #InvisibleDisabilities and be sure to tag UOAA.

We make it easy to share even if you are not on social media you can click on a storyprompt here here to record a video automatically or leave a text response or photos for our collection of “Visible Support” stories!

However you choose to celebrate, let us know! Share your photos and ideas for raising ostomy awareness this year with UOAA. 

To learn more and get involved in World Ostomy Day 2025 please visit https://www.ostomy.org/world-ostomy-day/

Finding Your Way: The Journey Forward with an Ostomy

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By Ted Leamy

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

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

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

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

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

Body Literacy

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

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

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

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

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

Presence and Appreciation

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

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

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

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

Three Stages of the Ostomy Journey

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

I think of it as three stages:

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

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

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

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

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

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

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

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

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

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

Flourish and Thrive

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

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

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

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

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

Mind the Gap

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

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

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

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

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

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

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

Inspiration Without Comparison

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

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

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

Closing Reflections

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

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.

UOAA is Here for Bladder Cancer Survivors

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Since its inception 20 Years ago United Ostomy Associations of America, Inc (UOAA) has supported and welcomed members living with a urostomy (ileal conduit) or urinary diversion as a result of bladder cancer and related conditions.

Urostomy surgery is explained in a page from UOAA’s Living with a Urostomy Guide

Each May is Bladder Cancer Awareness Month. The American Cancer Society estimates about 84,870 new cases of bladder cancer in the United States for 2025 and about 17,420 deaths from bladder cancer (about 12,640 in men and 4,780 in women)

While this common cancer is most often treated without radical surgery a urologist may suggest bladder removal surgery to stop the cancer if a bladder tumor reaches the deeper muscle wall or resists other therapy. A urinary diversion is needed to replace the bladder. This involves using parts of the intestines to allow urine to pass from the kidneys to either an internal urinary reservoir pouch such as Indiana Pouch or a neobladder.

For example, Deion “Coach Prime” Sanders recently went public with his journey and life-saving bladder creation surgery for bladder cancer.

A urostomy or an external ileal conduit, is when a stoma is formed. An ostomy pouch is worn over the stoma to collect urine.

With surgery comes new things to learn and adjust to in order to achieve the quality of life you were used to before bladder cancer.

UOAA has over 270 Affiliated Support Groups around the United States. Bladder cancer survivors attend many of them and also serve as volunteers and leaders. Peer support and preparation can put you on the path to success in what may be a challenging time both emotionally and physically.

We recognize that those with an ileostomy, colostomy and various gastrointestinal disorders may dominate public conversations and education about living with an ostomy. Please know that the voices of urostomates and those with a urinary diversion are also welcome at all UOAA events and supported and empowered by UOAA.

UOAA’s Living with a Urostomy Guide is available for free online. Created by ostomy nurses with input from a urostomy patient and a leading urologist, this trusted resource is vital to anyone who has or may have to have this life-saving surgery.

Learn about the unique aspects of a urostomy pouch and options that help improve sleep for urostomates like a night drainage bag.

Ostomy.org is also home to a guide on continent urostomies and other specific considerations.

UOAA advocates on a national level for all people living with an ostomy or continent diversion. Consider taking out a National Individual Membership to help amplify our voices and receive special member benefits along the way.

Check out our many self-advocacy tools designed to help you know what to expect and to take control of your healthcare.

Having access to an ostomy nurse is critical to solve issues before they worsen. You can use our Outpatient Ostomy Services Finder to find a clinic near you or consult a certified nurse online with our Virtual Ostomy Clinic provided by The Wound Company. We also have information on what nurses need to know about urostomy management.

It’s important to learn the facts about living with an ostomy. After the healing period outlined by your surgeon you can swim, bathe, travel, and embrace a new normal life. Reading patient stories from both the male urostomy patient and female bladder cancer survivor perspectives are also helpful.

Seize any opportunity to meet other urostomates. UOAA’s 2025 National Conference in August will feature special sessions and meet-up opportunities for people living with a urostomy.

People living with an urostomy as a result of bladder cancer may experience unique sexual issues. Consult with you doctor but also learn about some common issues in our sexuality and intimacy guide.

Misinformation and stigmas surrounding both ostomy surgery and bladder cancer still exist. Nonprofits like Bladder Cancer Advocacy Network (BCAN) and UOAA are working to improve quality of life with support and information. Bladder cancer survivors are an important part of UOAA, join with us to create a better tomorrow.

Ostomy Anxiety: Horror in the Grocery Store?

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By Robin Glover

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

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

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

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

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

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

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

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

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

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

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

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

I try to carry tape with me everywhere I go.

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

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

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

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

Fears, Faux Pas and Fulfillment

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My Ostomy Story

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

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

My Journey

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

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

Be Prepared – a Few Hints and Hacks

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

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

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

You Are Not Alone

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

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

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

The Future

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

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

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

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

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

You’ve Got This!

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.

 

This Pop-up Ostomy Clinic is A National Destination

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By Ed Pfueller, UOAA Communications and Outreach Manager

There is a stoma clinic so good that some people anticipate it every two years and travel from halfway across the country to go to it.

This free stoma clinic is staffed by volunteer Wound, Ostomy and Continence (WOC) nurses and medical professionals and is always included as part of UOAA’s National Conference. This summer the conference is back and a few ordinary rooms of the Hyatt Regency Grand Cypress Resort in Orlando, Florida will be transformed into a bustling stoma clinic from August 14 through 16. This free stoma clinic is stocked with a wide variety of supplies donated from manufacturers and other ostomy-related companies, large and small, for people to sample.

“The WOC nurses are helpful, informative, and full of suggestions and encouragement.”

UOAA Board Member Laura Kaiser, APRN, A-CNS-BC, WOCN is organizing the clinic and volunteer nurses this year. “My colleagues in ostomy care are very generous and giving individuals and are always willing to offer guidance and advice within their specialty. Many ostomy nurses have been lifelines to people through crises. A clinic often allows a nurse a different perspective on life! Ostomy nurses from past conferences say this is the best and most fulfilling conference that they have attended.” She says.

The conference attendees feel gratitude for the nurses. Gail Jasne attended the conference and stoma clinic in 2019 and said, “The WOC nurses are helpful, informative, and full of suggestions and encouragement.”

Mary Hardee attended the conference for the first time in 2023. “My first session was the free stoma clinic. The WOC nurse was very knowledgeable, reassuring and helpful. She let me try a different appliance that met my needs better and she gave me samples to try at home. She also noted that I have a hernia and educated me on that.” Hardee says.

Kaiser says stoma clinic patients should expect to be asked helpful questions to get the root of problems such as:

  • Is your skin red and irritated, does the pouching system leak?
  • Please describe what happens when the pouch leaks and where does it leak?
  • What time do you eat your dinner?
  • Show me how you clean your skin.
  • Does your stoma or the skin around your stoma bleed?
  • Patients often cut the wafer too large or too small and crust incorrectly, I always ask if I may measure their stoma.
  • What pouching system lasted longest and was the most comfortable / what is the longest wear time?

UOAA believes that the best ostomy clinic is the one you can visit the soonest to solve an ostomy problem before it gets worse. That’s why we created the Ostomy Outpatient Services Locator to search for the one closest to you and champion the UOAA Virtual Ostomy Clinic with The Wound Company for a self-pay solution you can access wherever you are.

Jill Jeffries shared her experience and perspective meeting other ostomates gave her. “The nurse explained how I could better wear my pouch system to protect my stoma and surrounding skin from possible irritation. Many people I met had much more serious issues than mine, and I left with a few new friends and great gratitude that my situation is so manageable. I also took away several samples of products new to me that I believe will be very helpful,” Jeffries said. “Thank you for such a great opportunity! I hope to see everyone at the next UOAA National Conference.” she added.

“She let me try a different appliance that met my needs better and she gave me samples to try at home.”

As for the ostomy supply samples that will be available this summer Ostomy Nurse Kaiser says, “If all of the manufacturers come through then the inventory should be extensive and will offer patients and nurses alike a great opportunity to see what is available to the consumer.”

There are typically 18 to 30 volunteers helping in the stoma clinic so Kaiser says if they have enough nurses this year, one WOC Nurse will see patients and make recommendations and be paired with another medical professional (who may or may not be an ostomy nurse) who would act as a runner, assistant and overall helper. 

“The stoma clinic along with our huge ostomy product exhibit hall is something that really makes UOAA National Conferences so unique,” says UOAA President Cheryl Ory. “There are people who very infrequently see an ostomy nurse but when they arrive at our conference always check in at our stoma clinic to see what small improvements they may be able to make in their ostomy health.”

This year the free stoma clinic will be open 8:00 am to 5:00 pm Thursday, August 14 and Friday August 15 and 8:00 am to Noon on Saturday, August 16. 

“Conference registrants can sign-up through our new conference mobile app by selecting the time slot that works for them and add it to their calendar of sessions and events, or in-person at the information desk when they arrive to check in,” says UOAA Executive Director Christine Ryan.

Thank you to the the companies that donate supplies and the nurse volunteers who provide this service to our community at each UOAA National Conference!

Help Others Help You! Ostomy and Continent Diversion Personal Health Preparedness

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Why a Medical Alert ID Matters

By Ellyn Mantell with Jeanine Gleba UOAA Advocacy Manager

It’s a fact; ostomies and continent diversions save lives. Most people are very private about having a fecal or urinary diversion and only share information with people to whom they are most close. Living with a diversion is often considered an “invisible disability”. The concern is, what would happen with these individuals if they were in an accident, unconscious or unable to speak for themselves? They would be unable to notify an emergency responder of the unique needs of the diversion. For example, a Kock pouch is an internal pouch/reservoir that has a stoma that needs to be catheterized throughout the day to empty it. If an emergency responder were not aware of this need, it could result in over filling of the reservoir and damage to the reservoir. 

There is a simple non-verbal way of communicating health issues and medical conditions in emergencies that deserves attention and should be considered. According to the Centers for Disease and Control Prevention (CDC), for personal health preparedness “help others help you” by wearing a medical alert ID bracelet or necklace engraved with important information for emergency responders and healthcare providers. By wearing a form of medical identification people living with an ostomy or continent diversion can effectively advocate for their health and safety protection when they are unable to speak up for themselves. It provides peace of mind should the worst-case scenario happen.  

A real life example shared with UOAA may explain the efficacy of saving time in an emergency situation. An ileostomate was crossing the street and hit by a car. He was not terribly injured, but the force of hitting the ground caused his pouch to explode, causing the first responders to assume his abdomen had been perforated. They spent valuable time cutting clothing to find the cause of the seepage, an unnecessary waste of what could have been life-saving time. Had this gentleman been wearing a medical alert bracelet or dog tag necklace, he would have been assessed differently, and certainly more quickly. 

Wearing a medical alert ID is far more effective than carrying a card in one’s wallet or handbag, or counting on another person to provide vital information. If there is an accident or incident, one may be thrown from a car, their wallet lost or removed, or one may be separated from a person who can advocate. Additionally, a family member or friend may also be incapacitated in some way, or in shock, unable to provide this lifesaving information.

It is suggested by paramedics that a medical alert bracelet be worn on the left wrist, since that is where they reach first for a pulse. A medical icon in red is an attention-grabber, but whatever form of ID you choose be sure it includes the universal medical alert symbol.  Include as much information as possible and be specific. If there are medical instructions, spell them out. A sample inscription might say: Continent Urostomy Catheterize every 4-6 hours with a 1 4Fr. Catheter.

If there are other medical conditions, state them for emergency responders. Include such information as diabetes, allergies. This is no time to be vague. Include a cell phone number of a family member if there is room, and DO NOT FORGET TO ADD YOUR NAME TO THE FIRST LINE!

The most notable and recognized medical alert IDs are from the companies Medic Alert Foundation and American Medical ID. These companies can also keep on record more specific details of your medical history and current care with QR codes and ID cards in addition to the wearable ID.

For those who simply don’t like the look and style of the standard medical alert bracelet there are many more fashionable forms of ID. Other medical alert jewelry may be found on websites such as Lauren’s Hope, and Meridian Medical/Ostomy Supply Company sells a specific bracelet for ostomies. Although first responders tend to look for medical alert bracelets, for those who don’t want to wear jewelry, there are other types of IDs available including: Apple Watch slides, dog tags, and cell phone tags. Your ostomy nurse, primary care physician’s office and most pharmacies can also provide guidance.  

Some people may be uncomfortable wearing something that tells others they have an ostomy or continent diversion. Don’t let stigma stop you from being emergency-prepared!  Consider if you would wear medical alert identification if you had life-threatening allergies. When it comes to one’s health, it should never be associated with shame. 

Ostomies and medical alert IDs go hand in hand saving lives.

 

Disclaimer: UOAA does not endorse particular products, manufacturers, or suppliers.

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.

 

Don’t Miss UOAA’s 2025 Conference ~ A Whole New World

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By Cheryl Ory, UOAA President and Conference Chair

Attending UOAA’s 9th National Conference can be transforming for so many new ostomates. Knowing they are not alone can make a positive impact in their new world of living with an ostomy or continent diversion. It’s also a great way for previous attendees to reconnect to those they’ve met and found friendship with over the years while continuing to gain knowledge.

You’re invited to join us on August 14-16, 2025, for UOAA’s 9th National Conference at the lovely Hyatt Regency Grand Cypress Resort in Orlando, Florida.

We know how important it is for the ostomy community to come together, share life experiences, learn valuable information from experts in the field, and talk to vendors about their products and services. Our attendees can also consult with a WOC Nurse, maybe for the first time in years. And let’s not forget the social events that are a must at every conference. Making time for you to network, laugh and enjoy each other’s company is also one of our goals, which this year includes celebrating UOAA’s 20th Anniversary of supporting the community!

A Program with Something for Everyone

Our 2025 conference educational program schedule will not only focus on the physical aspects of having an ostomy or continent diversion, but the emotional and mental health challenges that many may experience as well. We’ve lined up a number of inspirational speakers who will cover the psychological needs of an ostomate both pre and post-op; envisioning life with an ostomy; overcoming PTSD, and how new ostomates can find their way forward with an ostomy. Diet and nutrition, health, fitness and active living, sexuality and intimacy, body image and wardrobe tips will also be discussed by fellow ostomates and experts in the field. And these are just a few of the sessions that you can choose from throughout the conference!

On Thursday afternoon and Friday morning our Exhibit Hall will be open, a must for the entire ostomy community!

Kimberly Holiday Coleman ,left, will be back with a session on Body Image that will have everyone feeling good!

Our keynote speaker is a secret right now, but you won’t be disappointed when they appear on stage at our opening ceremony on Thursday morning. So make sure to join us as we come together to welcome the ostomy community to this unique event.

First-time attendees will be welcomed with an orientation session and surgery-specific basic sessions offered on Thursday. You’ll not only learn about your type of ostomy, but you’ll also have the opportunity to meet and chat with ‘ostomy buddies’, fellow ostomates who have attended before. They’ll be happy to show you the ropes to ensure you have the best conference experience. 

There will also be three special sessions designed for our Affiliated Support Group (ASG) Leaders as well as an educational track and open discussions addressing the needs of the younger population of ostomates in attendance. We are also offering 4 sessions for medical professionals, which will also be eligible for CE credits. And let’s not forget caregivers; where would our community be without them? On Friday morning they will have the opportunity to attend sessions with fellow caregivers, as well as a mental health professional who will discuss coping with the stress of being a caregiver.

You’ll not only learn about your type of ostomy, but you’ll also have the opportunity to meet and chat with ‘ostomy buddies’, fellow ostomates who have attended before.

On Thursday afternoon and Friday morning our Exhibit Hall will be open, a must for the entire ostomy community! We anticipate over 40 vendors will be there to visit with you and share any new products they are offering, services they provide, clothing and accessories available in today’s market, and much more. We’ll be serving a complimentary boxed lunch on Friday before the Exhibit Hall closes at 1pm for you to enjoy.

You can also schedule a 1-hour consultation with a WOC Nurse at our Free Stoma Clinic through our Mobile App. Appointments are available all day Thursday and Friday and Saturday morning (Clinic will close at Noon).

Speaking of our Mobile App, you’ll receive an email to download the App, sign into our unique event, and set up your profile about 2 weeks before the Conference. You can view the schedule and bios of our speakers, check out the exhibitors and where they are located in the Exhibit Hall, connect with “ostomy buddies” and network with fellow attendees, join a Focus Group with one of our Sponsors and more.

Fun Social Events

This year’s closing night event will have a Mad Hatter theme!

Explore Orlando and enjoy dinner out on Thursday night, and then stop by the President’s Reception to meet our co-founder, Ken Aukett, myself, our new President Elect, Bob Baker, as well as UOAA’s Staff and Board of Directors. Enjoy a yummy dessert and beverage as we celebrate our 20th Anniversary with a special toast that evening.

On Friday, before heading to dinner, you are invited to a special UOAA fundraising event, a “Hole in One Golf Putting Contest”. Enjoy a cold glass of lemonade, visit with new and old friends, and try your hand at putting! Who knows, you may get lucky and win the prize, all while raising money to help support UOAA’s programs and services. If you’re not up to going out on Friday night, we are also planning an indoor activity to be announced soon. 

As we wrap up the Conference, Saturday night will not disappoint with our “Mad Hatter Ball”. You’ll enjoy a few scrumptious treats and there will be a cash bar for cold drinks, as well as coffee and tea served. Think about wearing a themed costume or fun hat to the event, and dance the night away to the DJ we have lined up! What a great way to say goodbye to those you’ve just met, and to someone who may now be a forever friend. 

Make it a Vacation with Family or Friends

What a great opportunity to meet fellow ostomates in-person that you’ve only met online while you attend UOAA’s 9th National Conference. Stay a few days earlier or after the conference and enjoy what the Resort has to offer with family and/or friends.

The Hyatt Regency Grand Cypress Resort is a family-friendly resort on a lake with water sports and features a fabulous lagoon style pool with a water slide, (I can picture myself lounging in one of those cabanas after all our hard work to put on this conference is done) A shuttle bus is available to area theme parks and it is within a 5-minute drive of Disney Springs™ and shopping. There are also 3 on-site restaurants as well as a grab and go market.

Golfers can enjoy proximity to two, 18-hole Jack Nicklaus-designed golf courses.

UOAA has made arrangements with the Hyatt Regency Grand Cypress Resort to provide the same Guest Room Rate, $149 per night plus taxes, for single through quadruple occupancy, starting on Tuesday, August 12th, through Monday, August 18th. Make a reservation at the special UOAA Link or call and Provide code “MB18” and the Resort Fee is waived for our group, a $49 per room per day savings!

Stay a few days earlier or after the conference and enjoy what the Resort has to offer…

Register Today!

Register by May 31st to attend at the ‘Early Bird’ rate, a $30 savings! You can also make your reservations at the Resort all in one place – www.ostomy.org/conference2025/. We will continue to update this webpage, including our Program Schedule, as it continues to come together. Please note some of the information shared in this article is subject to change, so please visit the webpage often leading up to the Conference.

We hope to see you in August as we explore this Whole New World!