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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  2. Okabayashi K, Ashrafian H, Zacharakis E, Hasegawa H, Kitagawa Y, Athanasiou T, Darzi A. Adhesions after abdominal surgery: a systematic review of the incidence, distribution and severity. Surg Today. 2014 Mar;44(3):405-20. doi: 10.1007/s00595-013-0591-8. Epub 2013 May 9. PMID: 23657643.​
  3. Broek RP, Issa Y, van Santbrink EJ, Bouvy ND, Kruitwagen RF, Jeekel J, Bakkum EA, Rovers MM, van Goor H. Burden of adhesions in abdominal and pelvic surgery: systematic review and met-analysis. BMJ. 2013 Oct 3;347:f5588. doi: 10.1136/bmj.f5588. PMID: 24092941; PMCID: PMC3789584.​
  4. Lubczyńska A, Garncarczyk A, Wcisło-Dziadecka D. Effectiveness of various methods of manual scar therapy. Skin Res Technol. 2023 Mar;29(3):e13272. doi: 10.1111/srt.13272. PMID: 36973982; PMCID: PMC10155853.​
  5. Chmielewska D, Malá J, Opala-Berdzik A, Nocuń M, Dolibog P, Dolibog PT, Stania M, Kuszewski M, Kobesova A. Acupuncture and dry needling for physical therapy of scar: a systematic review. BMC Complement Med Ther. 2024 Jan 2;24(1):14. doi: 10.1186/s12906-023-04301-4. PMID: 38167051; PMCID: PMC10759514.​
  6. Sinclair M. The use of abdominal massage to treat chronic constipation. J Bodyw Mov Ther. 2011 Oct;15(4):436-45. doi: 10.1016/j.jbmt.2010.07.007. Epub 2010 Aug 25. PMID: 21943617.​
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  8. Barral, Jean-Pierre. Visceral Manipulation. Vista CA: Eastland Press, 1993. ​
  9. Arung W, Meurisse M, Detry O. Pathophysiology and prevention of postoperative peritoneal adhesions. World J Gastroenterol. 2011 Nov 7;17(41):4545-53. doi: 10.3748/wjg.v17.i41.4545. PMID: 22147959; PMCID: PMC3225091.

 

RETA’S HOLIDAY REFLECTIONS ON LIVING WITH SHORT BOWEL SYNDROME

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

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

A Holiday Health Crisis

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

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

A New Reality: Navigating Life After My SBS Diagnosis

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

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

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

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

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

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

Learning About An SBS Treatment

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

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

Please continue reading for additional Important Safety Information.

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

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

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

Another Decision: Weaning Off Parenteral Support Under Medical Supervision

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

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

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

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

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

IMPORTANT SAFETY INFORMATION

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

Making abnormal cells grow faster

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

Polyps in the intestines

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

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

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

Blockage of the bowel (intestines)

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

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

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

Swelling (inflammation) or blockage of your gallbladder or pancreas

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

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

Fluid overload

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

The most common side effects of GATTEX include:

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

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

What should I tell my healthcare provider before using GATTEX?

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

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

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

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

What is GATTEX?

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Squid Game: The Challenge Contestant Embraces Life with an Ostomy

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My ileostomy and how it gave me the confidence to participate in such a wild adventure!

By Kathy Kelly #258

Squid Game: The Challenge Season 2 streams on Netflix starting November 4

At age 35, while pregnant with my 4th child, I was diagnosed with ulcerative colitis. The symptoms appeared out of nowhere during my pregnancy and unfortunately, because I was pregnant, there was very little that could be done to manage my disease.  After giving birth to my daughter, I immediately sought medical intervention to address my UC symptoms, but relief was terribly elusive.  I went from being an active, social, and extroverted person to not wanting to leave my house.  Not only did I have little to no control or predictability of my colon, but I also struggled with intense cramping, mouth sores, and copious blood loss.

Kathy Kelly is featured on the poster of Season 2 of Squid Game: The Challenge on Netflix.

Over the next 18 months, I tried several different “Biologics” and endured multiple rounds of steroids.  Each new medicine brought with it the hope of relief, but that hope was never realized as I never experienced meaningful healing.  I spiraled into thinking and feeling like I would never be healthy again – UC was now dictating the terms of my quality of life.

After nearly 20 months of a losing battle with UC, my doctor made me aware of the “nuclear” option – I could have my colon removed and be fully healed of UC.  In hindsight, it seems so obvious, but at the time, I remember shuddering at the thought.  Yes, my UC was awful and yes, I was spending all of my waking hours desperately trying to manage my symptoms.  But having “a bag” felt like it was way too extreme.  My husband and I discussed it and I met with other GI docs to discuss the process and the more I learned about it, the more the lifestyle was normalized for me.  I found people online that shared their experiences and one thing stuck out to me – they had control.  For nearly two years at this point, I had completely lacked control.

So, in May 2021, after 22 months of suffering in relative silence with UC and with the support of my medical team, I had my colon removed and was given an ileostomy.  While there was certainly an adjustment period – learning how to change my bag and care for my stoma – the immediate relief was shocking.  However, it wasn’t all positive.  Even some of my well-intentioned nurses would say things like “hopefully, this is just temporary and you’ll be back to normal soon”, and I remember feeling like neither my UC nor my new reality with an ileostomy was normal.  I quickly overcame that because of the obvious improvements to my health and quality of life. I made the decision just 4 months later to make my ileostomy permanent by having my rectum removed.

Having a permanent ileostomy has certainly been a journey – I had a peristomal hernia that required an additional surgery and I’ve experienced all of the typical “first timer” experiences – catastrophic leakages while on a date or at a friend’s house.  But, I can stay with completely certainty that my ileostomy has given me my life back.  I’m as active as ever.

I’m engaged in relationships with my husband, children, family, and friends.  I’m excited to be pushed out of comfort zone again – and to that end, I recently participated in Season 2 of Squid Game: The Challenge on Netflix!

We watched the first season of Squidgame Game: The Challenge as a family and we loved it! My husband made a silly comment to the kids saying “your mom would be able to kill all of those players” and when the kids saw that they were casting season 2, they begged me to apply. I just assumed my application would be lost in the thousands of emails, but fortunately something caught their attention!

It was an incredible experience that involved international travel, intense competition, and long hours of uninterrupted filming. My doctor even said limited bathroom breaks would probably be easier for me than most!

If I was still dealing with UC, I would’ve never trusted my body to take on something this challenging and stressful!  My ileostomy has restored my health, my energy, and my control and I’m incredibly grateful for it!

I think most of the friends I made while filming would be SHOCKED to learn I have no colon-which I love! My bag saved my life, and it’s something I’m really thankful for.

My husband was my biggest supporter. His encouragement allowed me to engage and play without any of the self-imposed pressure that had been building for months with this big secret! Now that the show is airing it is no surprise to friends that I would do something like this because I am so competitive and love engaging with people!

 

Editor’s note: You can now cheer on Kathy Kelly on Squid Game: The Challenge Season 2 on Netflix. Win or lose, we know the resilience of an ostomate is not a force to reckoned with! United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) nonprofit organization that supports, empowers, and advocates for people who have had or who will have ostomy or continent diversion surgery.

Catherine’s Story

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A long journey to an ostomy leads to a supportive community

I have suffered with digestive issues since I was a teen and the first symptoms I remember were back in high school.

I was a very shy, insecure young lady throughout high school and finding myself starting college, with growing concerns about my stomach, was very difficult for me. I started noticing urgency and stomach pains and when I moved into the dorms my symptoms got worse. Not only the stress of trying to fit in with so many new people, but for any of you that have eaten dorm food I’m sure you can understand why I struggled.

Fast forward four years, and I was getting married to the love of my life. He had just accepted that anywhere we went the first thing on the agenda was locating the bathrooms. After college we moved to a small town where I did not know anyone, I was a long distance away from my family for the first time and had a difficult time finding work. This is when I started to realize how much stress was impacting my abdominal pain. I began to blame the stomach pain on my anxiety and just accepted it as normal.

After we were married, we began to think about a family. More than anything I have always dreamed of being a mom. We tried for four years to get pregnant and the stress of constantly getting negative pregnancy tests really wore on me. We decided after many rounds of tests and exploratory surgery that we would try IVF. After a long process and the intense stress put on my body to prepare, IVF worked, and we were blessed with twins.

Unfortunately, this was the beginning of a new long and difficult road. I was considered a high-risk pregnancy from the start, and after all we had been through I felt like I was walking on eggshells through the pregnancy always afraid I was going to do something wrong.

I ended up being hospitalized at 20 weeks as my daughter’s sack was in the vaginal canal. I had a four week stay in the hospital where I was sewn shut and tilted onto my head to keep the babies in as long as possible. It was August and they weren’t due until January. The stress and fear for my children was overpowering.

Unfortunately, at 24 weeks my daughter decided she had waited long enough and pushed right through the stitches. They were born at 1lb 8 oz and 1lb 11oz. and the moment they were born they took them away into a special room because they were not breathing. When they moved us to the recovery room, we were told not to get our hopes up.

Two days after they were born, Megan had to be rushed to a new hospital because her lungs weren’t developed enough, and at 9 days old my son started spitting up green, they were only fed through a feeding tube at this point. I was terrified and did not know how they would do surgery on such a tiny baby.  I didn’t want to loose my little boy!

They went into surgery, and he came out with only 20% of his small intestine and an ileostomy. 80% of his small intestine did not form completely and was dead. This was our first experience with an ostomy, and it tore me apart knowing my baby needed this. Unfortunately, he continued to get weaker, and they had no choice but to reconnect him at 3 months as a last resort to save him. His sister had been sent home a couple weeks earlier and had been sharing a crib with her. He was sent home with a small chance of survival, but once he was reunited with his sister he began to thrive. He is now 26 and doing amazing!

When the twins were two years old my life was very stressful. I lost my dad to cancer and had a miscarriage in the same 24 hours. I was a daddy’s girl. He was there when I came into this world, and I was at his side when he left it. I miss him terribly to this day.

We were told there would be delays in their growth of our children for the first few years, but at the two year mark things seemed to suddenly slow down and after running further tests my babies were diagnosed with autism.

The loss of my father, a child, and the autism diagnosis seemed to push my stress levels even further and I started having horrible pains to the point where I couldn’t even stand up. Then the bleeding started.

I would have that urgency and when I reached the bathroom all I could get out was blood and it was horribly painful. I felt like I was being ripped apart from the inside out, and I could only sit and rock back and forth. It took everything I Had just to care for the twins and somehow fight through growing pain and bleeding.

I felt like “This is it, all the pain will be over soon”. At that point my husband and my best friend both begged me to get the surgery

I was finally diagnosed with ulcerative colitis. When my daughter was old enough to play with her dollhouse the mommy doll was always on the toilet. That made me so sad that she noticed my illness at such a young age even if she didn’t truly understand.

Throughout the years it would bounce between Crohn’s and Colitis. At one point they called it ulcerative Crohn’s. I was 29 when I was diagnosed, and at 41 years old I had my first hospitalization. Looking back, I should have been in the hospital a few times, but that would be accepting how serious things had become.

They mentioned removing my colon, but I am ashamed to admit I said I’d rather die. Somehow, I recovered enough to go home after a week despite still being weak and struggling.

After years of caring for my children I needed to work and was able to start a new job. This is where I was first exposed to a nutrition practitioner who helped me realize I had food sensitivities and supported me with good nutrition and whole food supplementation. I was beginning to flare and worried I would lose my job having to run to the bathroom so frequently at work, but they reassured me they were dedicated to helping me get my life back. It was overwhelming at first, but after 6 months I finally felt like I could live again.

I had many good years after that but still struggled with small bouts now and then. I had multiple back surgeries that seemed to cause flare ups, but I was able to recover each time. After 2020 I started having a horrible flare every year around the same time. At one point, trying to drive my son to work, I had to park and had diarrhea in the garbage in the back seat of the car. I couldn’t even get into the building.

At this point I was terrified to even leave the house and if I did, I became exhausted so quickly I could barely get anything done. I was afraid to eat so I was losing weight and becoming weaker by the day.

At 52 I was hospitalized with severe pain and bleeding again.  I felt as though I was being torn in half and this time it felt worse than usual.  I was in the hospital for the best part of two months. They would send me home and I would have to go back one to two days later in severe pain after my husband would push me to go. Deep inside I knew what they were going to tell me, and I fought to stay home trying to convince myself I could get over it on my own.

I walked into a room of smiling people there to support each other and they were very welcoming to newcomers.

On one of my final returns to the hospital they said I was unresponsive to the steroid infusions. By the time the surgeon talked to me I was under 90 pounds, but I still told him I did not want ostomy surgery. He was completely honest with me and said I either have surgery and because I was so weak already, I might not make it through. Without surgery I would not survive.

I cried so hard. I did not want this for my life.

The last time I was sent home before surgery I could not eat. I would try but the food would make me so sick I couldn’t bear putting anything in my mouth. It got so bad I couldn’t even get water down. I remember sitting on the toilet in pain and, all of a sudden, I just felt this feeling of peace and that everything was going to be ok.

I was going home.

I felt like “This is it, all the pain will be over soon”. At that point my husband and my best friend both begged me to get the surgery. It dawned on me that my poor husband had been trying to take care of me with a TBI and my twins had autism. My family still needed me.

I went back into the hospital and was so weak they had to give me TPN for a week in the hope they could get me strong enough for surgery. I am blessed that I had a wonderful surgeon, and everything went as well as it could. Many people said when they woke from this kind of surgery, they immediately noticed the pain was gone. I had hoped I would wake up have that feeling, but I was still in so much pain. I felt so emotionally broken I couldn’t bring myself to look at my stoma for days after the surgery.

My husband, bless his heart, was right there from the moment I came out of surgery watching the nurses empty so he could learn how to help me. I cried through my first handful of bag changes. My bag was covering two open wounds, and it hurt so badly when they had to remove the adhesive barrier. I couldn’t stand it whenever they came in to change my pouch and remembered thinking there was no way I could live like this. I went home a week later and had home health care along with TPN IVs and steroids. I was hooked up to a large bag of fluid each night to try to get nutrients back into my body since eating was still a challenge.

I had to learn how to properly walk and move again from my muscles wasting away but slowly I became stronger over the next few months. After about a month of care I decided I didn’t want to be miserable, and I would embrace this. It was a mental turning point for me, and I started wanting to do all my bag changes myself and worked hard to recuperate.

At about 6 months I started to slowly exercise again and was looking for a support group. My experiences with online support groups at this point were frustrating. It seemed like a lot of negativity and not much support. I was doing research online to find support and information to life as positively as I could and I found UOAA’s website and a local support group.

Walking into this support group meeting, I was nervous that it would just be a bunch of people complaining but it was just the opposite.

I walked into a room of smiling people there to support each other and they were very welcoming to newcomers. After a few visits to this UOAA Affiliated Support Group, one member even volunteered to help with my workouts since there were risks to strengthening your core after surgery.

I was finally starting to feel confident in my new life, but once again, there was an unexpected turn in my recovery. 10 Months in, out of nowhere, I started feeling severe pain in my abdomen that I could not control. It came on suddenly, and when I started vomiting, I called my surgeon. He was concerned since I wasn’t that far out of my surgery and shouldn’t be having these issues, so he sent me to the ER.

I learned it is ok to have bad days as long as I don’t dwell in them and firmly embrace my good days.

After being admitted to the hospital for a blockage I was not responding to treatment the way I should have so I was scheduled for immediate surgery. My surgeon went in and found my small intestine had twisted and was turning purple. I am so blessed that he found it in time and was able to save what was left.

Unfortunately, I developed a reaction to the dissolvable stitches and had open wounds for over 3 months. These open wounds created challenges that kept my bag from adhering to my skin. Honestly this surgery affected me mentally more than my ostomy surgery. The scars and puckering from infection still mess with my head but I am learning to love my new body.

I recently attended the UOAA National Conference in Orlando and this was the best thing I could have done. My husband made a comment that that was the most confident he had seen me in a long time. I felt so much love and support there. I also met some amazing people who reinforced my mental and emotional recovery.

I learned it is ok to have bad days as long as I don’t dwell in them and firmly embrace my good days. I have been feeling a push to share my story to hopefully help and support others in the way I have through my journey. I look forward to finding ways to inspire others and make a difference in our community.

I have to say my quality of life has drastically improved. Don’t get me wrong, there are hard days and challenges, but I can face them without the pain and exhaustion that held me back for so many years.

I am still here for my family and can continue to help people with my career in Nutrition Response Testing. I can say I am truly grateful and blessed to have this ostomy and hope I can inspire others and help them along in their journey!

Celebrate World Ostomy Day with UOAA!

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

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

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

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

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

A Special Edition of Ostomy Academy

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

Find or be the “Visible Support”

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

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

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

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

Share your “Visible Support” on Social Media

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

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

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

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