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

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

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

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

I was a senior in high school.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Because I’ve been there.

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

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

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

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

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

Will anyone notice?

Will I ever feel normal again?

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

I’m answering as someone who has lived it.

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

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

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

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

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

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

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

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

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

It’s realizing your story isn’t ending.

It’s just beginning. ❤️

 

 

 

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

Instagram: @withkellyxo
Email: kellymendellonp@gmail.com

Meet UOAA President Justus Anderson

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

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

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

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

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

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

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

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

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

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

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By Amy Shulfer, RN, MSN, CWON

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

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

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

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

The Myth of the “Perfect Caregiver”

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

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

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

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

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

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

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

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

Finding Your Anchor in the Storm

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

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

  1. Give Up the Control, Keep the Faith

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

  1. Embrace the “Breath Prayer”

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

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

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

  1. Lean on Specialized Advocacy

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

You Are Still Being Carried

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

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

 

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

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

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

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

A Mother’s Strength: Searching for Answers

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

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

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

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

A New Diagnosis: Short Bowel Syndrome

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

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

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

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

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

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

Learning About An SBS Treatment

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

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

Please continue reading for additional Important Safety Information.

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

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

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

Sharing My Story to Encourage Perseverance

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

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

IMPORTANT SAFETY INFORMATION

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

Making abnormal cells grow faster

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

Polyps in the intestines 

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

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

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

Blockage of the bowel (intestines)

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

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

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

Swelling (inflammation) or blockage of your gallbladder or pancreas

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

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

Fluid overload

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

The most common side effects of GATTEX include:

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

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

What should I tell my healthcare provider before using GATTEX?

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

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

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

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

What is GATTEX?

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

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

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

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

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

 

Resilience Story: Brittany Jackamonis

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

Resilience Story: Denise Miller

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

Kidney Stones and Ileostomies

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

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

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

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

Changes in Urine Chemistry After Ileostomy

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

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

This combination creates an environment that favors kidney stone formation.

Types of Kidney Stones Common in Ileostomy Patients

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

Calcium Oxalate Stones

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

Uric Acid Stones

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

Management Strategies

Hydration Goals

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

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

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

Dietary Considerations

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

Monitoring and Follow-Up

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

Prevention Strategies

Daily Prevention

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

Medication Considerations

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

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

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

When to Seek Urgent Medical Care

Seek immediate emergency care if you experience:

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

Key Takeaways

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

 

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

 

References

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

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

January 13, 2026

 

 

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

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

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

The summer of 2022 changed things.

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

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

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

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

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

My Top Tips for Going Out with IBD or an Ostomy

1. Plan Ahead & Ask Questions

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

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

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

2. Bring What You Need 

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

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

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

3. Listen To Your Body

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

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

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

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

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

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

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

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

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

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

 

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

Bruce’s Ostomy Journey with Moldable Technology

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

✔ Adjusting to life after his ostomy surgery

✔ The challenges he faced with leaks and pouching reliability

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

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

✔ Staying active and confident during water activities

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

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

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

 

 

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

Smashing Cancer and Stoma Stigma

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By Kevin Smets

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

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

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

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

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

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

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

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

But the journey didn’t stop there.

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

So I made it my mission to smash that stigma.

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

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

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

———

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

Gloria the Phoenix

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Remembering Gloria by Bob Kwiatkowski

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

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

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

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

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

Embracing Life

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

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

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

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

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

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

Medical Challenges

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

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

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

Caregiving

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

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

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

A Phoenix

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

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

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

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

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

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

UOAA Supports Colorectal Cancer Survivors

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By Cheryl Ory, UOAA President

While advances in cancer treatments rise the news on colorectal cancer has been alarming. Colorectal Cancer is the 2nd leading cause of cancer death in the U.S. and the number one cancer killer of people under the age of 50 according to the American Cancer Society.

The deaths this year of the beloved actors James Van Der Beek and Catherine O’Hara have brought more awareness to colorectal cancer. Hopefully the spotlight during this National Colorectal Cancer Awareness Month continues to encourage more people to be screened. UOAA stands alongside partner organizations like Fight Colorectal Cancer to push lawmakers into giving more funding and attention to what is a colorectal cancer crisis.

United Ostomy Associations of America (UOAA) has been supporting cancer survivors and others living with an ostomy for over twenty years so that they can have the best quality of life possible. If your cancer requires life savings ostomy surgery, remember – you are not alone. UOAA estimates that between 725,000 to 1 million people in the U.S. of all ages and backgrounds are living with an ostomy, and over 100,000 ostomy surgeries are performed each year.

UOAA President Cheryl Ory at the Fight Colorectal Cancer United in Blue Rally in Washington, D.C. in 2024.

In 2008 I was diagnosed with Stage 3b colorectal cancer. I was told the cancer had been developing for at least 10 years or more, most likely when I was in my early 30’s. There was a polyp, if it had been removed at an earlier date the cancer would not have developed. After radiation, chemo, surgery, and more chemo I am now a colorectal cancer survivor with a permanent colostomy, an ostomy that has saved mine and others lives from not only cancer, but other debilitating diseases.

If you are a person still at risk, like those with IBD, let me urge you to get screened. Screening can result in any colorectal cancers being found earlier when they are easier to treat.

Every individual person’s disease treatment is unique but ostomy surgery for colorectal cancer may mean a temporary ostomy, ileostomy (from the small intestine) or colostomy (large intestine). This may be required to give a portion of the bowel a chance to rest and heal. When healing has occurred, the colostomy can often be reversed and normal bowel function restored.  It’s important to know that not everyone with an ostomy will be a candidate for a reversal operation. A permanent colostomy may be required when a disease affects the end part of the colon or rectum.

We have two guides written from a patient’s perspective, Living with a Colostomy and Living with an Ileostomy, to help you learn as much as possible before and after you have this life changing surgery.

It’s especially important to connect with one of hundreds of  UOAA Affiliated Ostomy Support Groups in the U.S. before, or shortly after, your surgery. Even online peer support and preparation can put you on the path to success in what may be a challenging time both emotionally and physically.  Ask if the hospital has a certified ostomy nurse and insist on having your stoma placement marked before surgery. These and other self-advocacy tools are paramount and outlined in our Ostomy Patient Bill of Rights.

You may feel too overwhelmed as you are discharged at the hospital to fully understand ostomy pouching systems and accessories and lifestyle considerations.

As you recover, if you have a descending or sigmoid colostomy you may want to ask your doctor or ostomy nurse if you are a candidate for colostomy irrigation. I utilize colostomy irrigation, which is similar to an enema, as a way to have control over my output schedule that fits my lifestyle. UOAA seeks to raise more awareness for the practice and encourages medical professionals to discuss this treatment option with patients who may benefit.

If you have a  medical question contact your doctor or ostomy nurse. If you need help finding an ostomy nurse use or our outpatient ostomy clinic finder or make plans online with a virtual ostomy clinic. If you have a quality of life question-UOAA resources here at ostomy.org and peers at UOAA Affiliated Support Groups likely have the answers.

It’s important to learn the facts about living with an ostomy. After the healing period outlined by your surgeon you can swim, bathe, be intimate, travel, and embrace a new normal life. After some trial and error, you may also eat most of the foods you have been able to eat in the past. Education is key to battling misinformation.

Unfortunately misinformation and stigmas surrounding both ostomy surgery and colorectal cancer affect the number of people getting screened or getting the medical treatment they need.  Let’s work together to educate, advocate and support survivors.

 

Cheryl Ory is a colorectal cancer survivor who received a permanent colostomy in 2008. Cheryl is a Registered Nurse who has had a passion for volunteering with the ostomy community ever since and first joined UOAA’s Board of Directors in 2015. She now holds the position of President.

 

 

 

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

Seeking an Extraordinary Life with an Ostomy

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This ‘Walking Miracle’ has a lot more life to live

By Lisa Bowie

I am 65 years old and have lived with an ileostomy for almost 14 years. I share my story in the hope that I may inspire others.

I was diagnosed with ulcerative colitis in my late 30s. Under the care of a physician, I managed it as best I could, but it would still periodically come out of remission. In 2012, at the age of 52, a flare-up caused my large intestine to rupture. I developed toxic megacolon, and my major organs began shutting down. Unbeknownst to me at that moment, I was within hours of death. A general surgeon performed emergency surgery to remove my entire large intestine in an attempt to save my life.

I woke up after three days in the ICU to find I had an ileostomy. I thought I was out of the woods, but I spent the next four years being hospitalized nine times in three different hospitals across two states, undergoing five major surgeries by four different surgeons. For those four years, it felt like life was passing me by, but I refused to give up. At times, I had to say everything I was thankful for and dreamed of out loud just to get through the day—sometimes even just to get through the next second. My faith in God enabled me to hold on to the belief that there was a light at the end of the tunnel and that I could one day be healed. After my last surgery in 2016, I was finally fully healed. I have been living a full life, albeit with a permanent ileostomy, ever since.

I not only love life, I seize it and savor it.

It was an extremely difficult, at times utterly excruciating, four years. Words fail to describe the full depth and breadth of what I endured. I did not choose this situation, and truthfully, I don’t like it; however, I was determined to survive, and I am determined never to let it define me. Resiliency, perseverance, a “never-ever-give-up” attitude, and an incessant desire to inspire others have helped me through this journey and continue to carry me forward.

I know I’m a walking miracle. My emergency surgeon in 2012 did not expect me to survive the operation. He said I was in the worst condition of any patient he’d ever seen and was ecstatic that I made it. Other surgeons since have shared the sentiment that it is a miracle I’m alive. I am grateful beyond measure for this gift, and I will not waste it. I not only love life, I seize it and savor it. If sharing my story helps just one person, then my journey was worth it.

I can testify that it is possible to thrive with an ileostomy. I’m a single mother, and soon-to-be first time grandmother. I have a BS in Physics, an MS in Nuclear Systems Engineering, and I work full time as a nuclear engineer. Since 2012, I have accomplished so many things and continue to pursue new adventures. Here are a few things I’ve done with my ileostomy:

  • Racing and Driving: I raced my personal cars for several years in Autocross. In 2017, I won the Autocross Season Championship (Ladies Class) in the East Tennessee Region of the Sports Car Club of America (SCCA). On three occasions, I’ve driven track laps at the Bristol Motor Speedway in my Miata and Camaro.

  • Dance: Since 2022, I have competed in couple country dancing in sanctioned United Country & Western Dance Council events. In 2024, I won the title of World Champion in my division after competing both nationally and internationally.

  • Paragliding: In June 2025, I did a tandem paraglide from the 6200-foot Babadag Mountain in Oludeniz, Turkey—one of the highest peaks for commercial paragliding in the world.

  • Travel: I have traveled extensively, including trips to Alaska, Hawaii, Costa Rica, Ireland, Scotland, Spain, and Turkey.

  • Pageants: In April 2026, I will compete in the Ms. Tennessee Senior America Pageant. If by chance I win, I will move on to the national pageant in October 2026.

  • Community: I volunteer and dance with the “TN Jewels,” a group of women aged 60 and older who perform at nursing homes and assisted living facilities.

  • Active Lifestyle/water sports: I frequently go swimming, boating, kayaking, hiking, sailing, and snorkeling.

  • Writing: I am currently writing my first book—a biography about a young single mother from South Sudan living in Tennessee. She suffered incomprehensible atrocities, and I hope her story will eventually become a movie.

  • Ministry: I aspire to start a ministry to help women dealing with adversity by sharing my story of survival.

I’ve learned that life doesn’t have to be perfect to be beautiful. I choose daily never to let my ileostomy define or limit me. I do not want to live an ordinary life; I want to live an extraordinary one. I am only limited if I limit myself.

I hope that by sharing my story, I inspire others to believe they can achieve any dream their heart desires, even in the midst of adversity. Life is beautiful. Find what makes you smile and go seize it! This is your life—you, too, can make it what you dream it to be.

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

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