My Appendix Cancer and Ostomy Story

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Chances of survival from a rare cancer did not look good but that changed thanks to a complex surgery and ostomy, recovery came next.

By Donna Sklener

“Mother of All Surgeries” is the nickname given to the treatment for certain types appendix cancer. Never heard of it? I hadn’t either until it became the biggest challenge of my life. I was diagnosed with Low-Grade Appendiceal Mucinous Neoplasm (LAMN), a cancerous tumor in my appendix. As a further complication, it had escaped my appendix. When this happens, the mucinous cells that usually line the inside of the appendix begin relentlessly reproducing, attaching to the surfaces and organs in the abdomen and filling any open spaces in the abdominal cavity. This version of the disease is called Pseudomyxoma Peritonei, or PMP. The mass of mucinous tumors squeezes the organs, causes intestinal blockages and organ problems, and swells the abdomen. The low-grade version acts slowly and often goes undetected for years, or is found only incidentally when patients are being treated for other abdominal issues. Misdiagnosis is common, and most doctors, even oncologists, have never dealt with appendiceal cancer of any kind.

I first went to my primary care physician complaining of bloating and unexplained weight gain. Looking back, I think this disease was probably active for at least five years before I was bothered enough to approach my provider. My symptoms were relatively minor and I explained them away in my head as being due to reaching my 50’s, being diagnosed with an underactive thyroid, entering perimenopause, and having a desk job. But after I retired at 55 and began walking five miles a day with my husband and still gaining weight (I weighed and looked like I did when eight months pregnant), I decided to look deeper.

After bloodwork, an endoscopy, colonoscopy, CAT scan, and an aborted appendectomy, I was given a very scary diagnosis of a rare cancer I had never heard of. My first surgeon estimated I had the maximum abdominal tumor load according to the rating system used. He didn’t give me much hope of living past one year, and said three years was not likely. Fortunately, I did research and found that for my type of appendix cancer, it is critical to have an expert surgeon experienced in the massive surgery needed to treat the disease. I needed to travel to a hospital almost four hours from my home, but I am here to share my story three years later because of the expertise, surgical skill, and dedication of my surgeon, Dr. Patrick Wagner of Allegheny Health Network in Pittsburgh, Pennsylvania.

In May of 2023 I underwent a 12-hour surgery – officially referred to as Cytoreductive Surgery with Hyperthermic Intraperitoneal Chemotherapy, or CRS/HIPEC. The surgeon removed my appendix and the right side of my colon. And because the disease had escaped into my abdomen, he also had to scrape or burn off the mucinous cells from my organs. Any that were too affected and I could live without were removed, including my gall bladder, spleen, all reproductive organs, part of my bladder, part of my rectum, peritoneum, and omentum. For most people these would be separate surgeries and few would need all of them. I had them all at once! You can see how the nickname for this extensive and complex surgery came to be. After the cytoreductive part of the surgery, heated chemotherapy chemicals were poured into my open abdomen and circulated for 90 minutes. This HIPEC part of the surgery is done in hopes of killing any remaining mucinous cells that the surgeon could not see to remove.

I woke up with all kinds of new “attachments.” Two nerve blocks in my back, a nasogastric tube going up my nose and down my throat, an ART line in my neck, several IVs, two abdominal drains, a Foley catheter, and an ostomy pouch – because I now had an ileostomy. I was told my ileostomy was temporary, to allow the surgical sites in my colon and rectum to heal.

I was in the hospital for 11 days and lost 30 pounds, most of that during the surgery. The internal healing after CRS/HIPEC takes months. I had lost significant portions of my digestive system, and those remaining had been manipulated, stretched, cleaned, and put back in to a relatively empty abdomen. Everything had to recover, settle, and learn to do its job again, and that took time. I could eat only ice chips while in the ICU, then clear liquids, then soft food on the last couple days in the hospital. Due to the ileostomy, I was told to stick with a low residue, low fiber diet. One day, I’m sure by accident, I was given a ham and cheese sandwich for lunch. I knew enough not to eat that, but thought the mac & cheese that accompanied it was delicious. Until a few minutes later when it came back up. Turns out dairy was something my system was not yet ready for. Recovery involved a lot of trial and error, trying foods and seeing how my body responded. The debilitating cramps and pain (in addition to the expected pain of having an incision from my sternum to my pubic bone with 20+ staples) were scary. I often thought the cramps meant I would split open my anastomoses and have to be opened up again for repair. I also worried because I seemed to have high output into my ostomy bag. I had a large bag after surgery, and the nursing team at the hospital were great about taking care of that. Along with my catheter and drains, they had a lot to empty, measure, and dispose of. Those nurses are truly angels to recovering patients!

After three years of good health and still being “No Evidence of Disease,” I am able to see that my ileostomy was a remarkable aid to my healing and recovery.

A WOC nurse visited twice during my stay to teach me and my husband how to take care of the bag and make changes. It all seemed confusing and complicated, and I didn’t have the attention span (thanks to the pain and related pain management medications) to pay good attention. My husband was a saint and my rock. He took notes, practiced measuring and cutting the wafer, and never showed if he was grossed out. I was grossed out enough for both of us, and it was my body!

Discharge day came and I got set up with a home nursing visit a few days later to help change out the pouch. That nurse had to cut the wafer twice to get it to fit, applied the barrier ring to the wrong side of the wafer and had to start over, and then just a few hours after she left, I had a leak and we had to replace the bag again. My skin was already very sensitive, and the leak and additional change made it even worse. Over the next two months my husband got very good at doing bag changes. I don’t think I could have done them myself. I struggled with emptying the bag for a while because I still had to measure my output for my medical team (high volume worries), so I had to develop a routine of sitting on the edge of our tub to get the right angle to empty into the measuring pitcher, then dispose into the toilet, then clean up and put myself back together. One thing I learned to appreciate was the valve on my high-volume bags. That was much easier and cleaner to deal with than the bags with the open bottom that are rolled up or folded. I tried a few samples of those and just kept thinking, “Why can’t all bags for liquid output have a valve on them?”

I encourage anyone reading this to shed the fear and embarrassment you might be feeling, reach out for support, take advantage of resources that are available to help you

The biggest problem I had was that my stoma was placed right in the crease where I naturally bend at my waist. This led to so many barrier leaks and blow outs. Which then made me very reluctant to leave my house or have visitors. But my family and friends were so understanding and pretended not to hear all the gurgling and gas noises, or the smell that they assured me only I could detect. I am so grateful for their understanding and support.

Walking is really important to recovery from this surgery, so my husband and I started with very short distances – from the bed to the door of my hospital room at first – and worked up to three miles a day before my reversal surgery. I preferred using the high-volume bag, which could get heavy and pull when walking, so I was careful to empty it before we headed out. I tried a few belt options, but nothing ever worked well enough that I could say, “Oh, I forgot I had a bag” when walking around. Walks were uncomfortable and exhausting, but necessary.

Finally, after two months, reversal surgery was scheduled. We again traveled to the out-of-town hospital and as luck would have it, I had a pouch leak while sleeping the night before at a hotel. As we sleepily cleaned up and did a bag change, we laughed (ok, I cried a little too) and were thankful this would be the last one. I showed up at 5:30 am at the hospital with a shiny new pouch to take into surgery. After reversal, it was a much shorter stay at the hospital (four days – enough time to make sure my intestines woke up and were all ok) and the only attachment I had this time was another drain. This one came home with me, but was much easier to deal with than a bag and got removed two weeks later. After the reversal, I had to adjust my diet once again and could transition to more solid food and more fiber, while still experimenting to see what my recovering system could handle. It took several months to get back to eating as I was able to before my diagnosis.

Looking back, I did not approach having an ostomy with the right attitude. I resented that I had one, and felt pretty sorry for myself. I already felt very dependent on my husband as my caregiver during a very difficult surgical recovery, and the ostomy part of that made me feel even worse and magnified my concern that I was a burden to him (a feeling he vehemently denied, and which I am truly able to believe, now that it is in the rear-view window). I did very little research on ostomies, did not seek out helpful resources, and because it was temporary, resigned myself (and my husband) to just suffering through the experience until my reversal. This is not a good way to deal with an ostomy.

After three years of good health and still being “No Evidence of Disease,” I am able to see that my ileostomy was a remarkable aid to my healing and recovery. It gave my system time to heal and helped me get back to the things I enjoy doing, like walking every day, spending time with friends and family, gardening, and traveling the world.

With my disease, if only one mucinous cell remains, there is always a chance that I will have a recurrence and need another surgery – and perhaps another ileostomy or colostomy. I have since learned of many resources such as those from UOAA for ostomates. Next time I will insist on better home nursing support. I will call the help lines at the various supplier companies to explore pouch and attachment options to help with the leaks caused by my specific anatomy. I’ll use the wonderful resources at ostomy.org now that I know they exist. I can’t imagine how much better my whole experience would have been with a fellow ostomate to talk to and the support of this fantastic organization!

So, I encourage anyone reading this to shed the fear and embarrassment you might be feeling, reach out for support, take advantage of resources that are available to help you, and realize that although few people love their ostomy, we can appreciate what it does for us, and find the best way of living a full life with it. I wish everyone the very best experience possible.

 

 

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

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By Amy Shulfer, RN, MSN, CWON

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

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

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

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

The Myth of the “Perfect Caregiver”

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

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

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

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

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

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

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

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

Finding Your Anchor in the Storm

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

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

  1. Give Up the Control, Keep the Faith

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

  1. Embrace the “Breath Prayer”

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

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

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

  1. Lean on Specialized Advocacy

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

You Are Still Being Carried

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

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

 

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

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

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

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

A Mother’s Strength: Searching for Answers

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

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

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

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

A New Diagnosis: Short Bowel Syndrome

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

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

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

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

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

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

Learning About An SBS Treatment

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

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

Please continue reading for additional Important Safety Information.

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

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

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

Sharing My Story to Encourage Perseverance

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

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

IMPORTANT SAFETY INFORMATION

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

Making abnormal cells grow faster

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

Polyps in the intestines 

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

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

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

Blockage of the bowel (intestines)

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

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

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

Swelling (inflammation) or blockage of your gallbladder or pancreas

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

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

Fluid overload

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

The most common side effects of GATTEX include:

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

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

What should I tell my healthcare provider before using GATTEX?

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

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

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

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

What is GATTEX?

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

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

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

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

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

 

Resilience Story: Brittany Jackamonis

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

Resilience Story: Denise Miller

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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.

The Intersection of Race and Health: Advocating for Patients in Education and Access

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By Michael Ashley Turner

Having physicians not listen to you
Not being taken seriously
Not having affordable health options
Having organizations want to use your story but not see representation of people that look like you on their social media

photo credit Jermaine & Catrone Turner of Jpixstudios

Coming into spaces and not being able to engage due to lack of diversity
Not being property educated on medical issues
Reached out to organizations to help bridge the gap between their diversity.

Appreciative to UOAA for meeting with me
Being misdiagnosed for years due to doctors not wanting to take the extra steps
Micro aggression that physicians have given me vs when I’ve been seen with a Caucasian friend.

It’s not every day that we enter spaces, especially in health and wellness, where Black and Brown people are truly represented and advocated for. I’ve had my share of experiences in medical offices and health organizations where I was not heard, not advocated for, and not taken seriously about what I had been experiencing for years.

For context, I was born in Chicago and now call Atlanta home, but in many ways my real “home” has been found through the journey I’ve taken with my health and career.

For more than 14 years, I lived with chronic digestive issues that shaped almost every part of my life. The experience was confusing, isolating, and exhausting. I went from appointment to appointment searching for answers while trying to explain symptoms that doctors often dismissed or minimized. Eventually my condition led to a total colectomy and ostomy. It was not until 2022 that I finally received a definitive diagnosis: Crohn’s disease. Hearing the words was difficult, but it also brought clarity after years of uncertainty.

The truth is that my story is not unique. Many people living with chronic illness experience long delays in diagnosis. For many Black patients, the path can be even more complicated. There were times when I felt that physicians simply were not listening to me. My symptoms were questioned. 

My pain was downplayed. The extra testing and deeper investigation that could have happened earlier often did not happen. Years later, I would realize that those missed steps contributed to how long it took to get the correct diagnosis.

There were also moments when the difference in treatment was impossible to ignore. I remember appointments where subtle comments or dismissive attitudes felt like microaggressions. In some situations I noticed a clear difference in how physicians communicated with me compared to how they spoke to a Caucasian friend who accompanied me. Those moments stay with you. They make you question whether your voice is truly valued in the room.

Access to healthcare has also been part of the challenge. Affordable medical options are not always available, and navigating insurance while dealing with a chronic illness can feel overwhelming. When you are already managing pain, fatigue, and uncertainty, the financial side of healthcare becomes another barrier that many people quietly carry.

I believe representation, access, and education should exist in every part of healthcare.

Beyond the exam room, representation matters in the organizations that claim to support patients. There have been times when groups wanted to share my story or highlight my experience, but when I looked at their social media or leadership spaces I did not see people who looked like me. Representation cannot stop at storytelling. It has to exist in leadership, advocacy, education, and the faces that are consistently visible in those spaces.

There have also been events and community spaces where I simply did not feel like I could fully engage because the diversity was not there. When people cannot see themselves reflected in a space, it can create distance even when the mission is meant to be inclusive.

photo credit Jermaine & Catrone Turner of Jpixstudios

One of the biggest gaps I noticed early on was education. Many communities, especially communities of color, are not always given the same level of accessible information about GI conditions, ostomies, and chronic illness management. When education is missing, people are left trying to figure things out on their own. That can delay care, increase fear, and make an already difficult journey feel even more isolating.

Because of these experiences, I began reaching out to organizations and advocacy groups to have real conversations about diversity and representation. My goal has never been to criticize for the sake of criticism. My goal has always been to help bridge the gap so that future patients do not feel as invisible as many of us once did.

I am grateful for the organizations that are willing to listen and engage in those conversations. One example is United Ostomy Associations of America (UOAA), who took the time to meet with me and hear my perspectives. Those kinds of conversations matter. When organizations open the door to dialogue, real progress becomes possible.

Through all of this, I have learned that our struggles can become the very thing that pushes us to show up for others. My journey has led me to advocate for people living with ostomies, GI conditions, and mental health challenges. I share my story so others know they are not alone and so that healthcare spaces can continue to evolve.

Illness changes your life. It forces you to ask hard questions about your body, your voice, and your place in systems that do not always work equally for everyone. But it can also create purpose. It can open the door for advocacy, education, and community building.

I believe representation, access, and education should exist in every part of healthcare. Patients deserve to be heard. They deserve to be taken seriously. They deserve to see themselves reflected in the spaces that claim to support them.

And most importantly, they deserve care that honors their full humanity.

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.

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

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By: Sandra James, ACSW

Instagram.com/@colostomyforever

www.youtube.com/@SandraJames-LivingIt

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

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

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

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

Sandra at UOAA’s 2025 National Conference in Orlando.

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

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

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

From Watching to Sharing: Why I Started My Own Channel

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

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

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

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

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

Caring for My Stoma: What Works for Me

My New Travel Bag: What I Take with Me

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

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

How to Measure Your Stoma

Gratitude on High: An Ostomy Patient’s Journey of Faith, Community, and Black History

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By Tonya Kelly

As I drove down East Main Street in Reynoldsburg, Ohio, time stopped.

There it was my banner hanging proudly among so many incredible community members being honored for Black History Month. I pulled over, overwhelmed by emotion.

Tears flowed freely: tears of gratitude, tears of healing, tears of triumph. These last two years have been a journey I could have never imagined, and in that moment, all I could do was appreciate my new life.

To be back in my community, teaching, tutoring, doing what I love, surrounded by love, support, and blessings this moment means everything.

There were moments on this new journey, when my body felt fragile, when uncertainty felt louder than hope. But my faith carried me. Living life as an ostomy(ileostomy) patient has reshaped my understanding of strength, resilience, and purpose. My ostomy literally saved my life, but it also gave me a deeper calling: to live boldly, to serve openly, and to remind others that life after ostomy surgery is not only possible it can be powerful, joyful, and fulfilling.

My community carried me. Organizations like UOAA and Color of Gastrointestinal Illnesses (COGI) reminded me that I was never alone. Through education, shared experiences, and unwavering support, I found strength in knowing that ostomy (ileostomy) patients are not defined by what we’ve lost but by how boldly we live afterward.

Seeing my banner represented on East Main Street alongside other nominated Reynoldsburg residents was deeply humbling. Black History Month is about honoring the past, but it is also about celebrating the living, breathing history we create every day through service, advocacy, and community.

 

My daddy would be so proud.

I do this for him.
I do this for my family.
I do this for my community.
I do this for every ostomy patient who needs to see someone living fully, loving deeply, and standing tall visible and unashamed.
I am Black history.
I am an ostomy patient.
I am grateful.

 

 

 

 

Thanks to Tonya for her leadership and passion for the ostomy community. Seeing the need for ostomy support and supplies in her community she founded Ostomy Warriors a Columbus, OH-based local support and free donation hub dedicated to bringing awareness, dignity, and practical help to ostomy patients and their families. For World Ostomy Day 2025 she organized an Ostomy Awareness recognition at the Ohio State House where she received an official proclamation.

Ostomy Warriors provide access to donated ostomy supplies for individuals experiencing financial hardship, insurance gaps, or unexpected medical transitions. Beyond supplies, the Ostomy Board offers education, peer support, and encouragement for those learning to navigate life as a new ostomy patient. Our mission is rooted in community care meeting people where they are, reducing stigma, and ensuring no one feels alone on their ostomy journey.

Contact:  www.facebook.com/ostomywarriors
614-512-6511,  Ostomywarriors25@gmail.com

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.

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

 

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!

DENISE: LIVING WITH SHORT BOWEL SYNDROME

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For most of my life, I measured the time it would take me to make it safely to the bathroom. If the bathroom dash was an Olympic event, I’d have won a gold medal! I often use humor when I talk about my condition, short bowel syndrome (SBS). But my story is one of hope, and how staying hopeful has helped me through each day. Of course, it was more than that. Living with a serious and chronic gastrointestinal disorder like SBS can require determination, persistence, and yes, even a sense of humor. I’m thankful I’ve had one my whole life. My name is Denise 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.

My Story Begins

As a teenager, I had an ongoing argument with my brother and sisters. Whenever it was time to do the dishes, I had to use the bathroom. They never realized that the reason that I had to use the bathroom every time we were done eating was because I had a medical issue. They just noticed that when it was my turn to do dishes I always disappeared. Nobody knew what was happening. In our family, we never went to the doctor and you put up with whatever you had going on. My dad and I were always racing each other to the bathroom to see who could get there first. I realize now that my father probably had some form of bowel disease, but he never was diagnosed.

When I was 18, I was diagnosed with Crohn’s disease. But I was determined to never let it get in my way. I got married and had three beautiful daughters. Along the way, I took a job as a 9-1-1 operator and eventually entered the police academy and became a police officer. Unfortunately, my first marriage didn’t last, but in time I met, fell in love with and eventually married a man who was then a member of the SWAT team. At that time, I finally felt like my life was falling into place—except for my recurrent Crohn’s flare-ups. Over the years, I had several surgeries caused by bowel obstructions. Each occurrence sent my determination into overtime. I wasn’t going to let anything stop me. I powered through each occurrence hoping it would be my last.

Then in 2009, even my unflappable hope and determination were tested after I retired from the police department. In November of that year, my husband developed a tumor on his spine, which left him paralyzed from the chest down. During this time, I cared for him and didn’t think about my Crohn’s disease at all. Although I didn’t want to admit it, the stress of caring for my husband around the clock took its toll on me. My Crohn’s disease got my attention like a house of bricks falling on top of me and one after another, complications set in.

Setbacks, Sepsis and Surgery

My daughter and her spouse moved in to help take care of my husband. Eventually I was hospitalized with yet another obstruction. Each time that I thought I was getting better, I’d suffer another setback. I became septic and had to go back to the hospital. I had an ileostomy to give my intestines and bowels a rest. If you are not familiar with an ileostomy, it is a surgically created opening in the abdomen in which a piece of the ileum (lowest part of the small intestine) is brought outside the abdominal wall. A stoma is created through which digested food passes into an external pouching system.

I was in the hospital for weeks, but I continued to worsen. I had horrible diarrhea and my electrolytes were off. Then I began having heart problems and was placed in the intensive care unit (ICU), where my kidneys began to fail. My body began shutting down and I was transferred to a specialty clinic. I was there for a month.

When I was finally discharged, I couldn’t leave the house for fear of having an accident if the ileostomy bag became too full and leaked—which it frequently did! After my surgery, food was moving too rapidly from my stomach to small intestines, an issue known as “dumping syndrome” – which caused me to experience a high volume of diarrhea. I had trouble keeping a good seal on my stoma site. Because of this, the skin surrounding my stoma became raw and infected. It was a vicious cycle!

My Diagnosis: Short Bowel Syndrome

Even after my ileostomy was reversed, I had limited bowel control. I was in and out of the hospital for over a year, and in November 2013 I was diagnosed with short bowel syndrome or SBS. SBS is 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. In adults, SBS can develop from a loss of function and surgical removal of parts of the intestine due to inflammatory bowel disease (IBD), such as Crohn’s disease. I sat there in shock. The thought of living like this for the rest of my life left me numb. When we returned home. I immediately went online. The more I read, the more I was worried. But then I realized, I could do this. Yes, having SBS would impact my life more than I initially thought, but it wouldn’t stop me.

At that time, since I could barely take care of myself, my husband had to stay at a nursing home.
My life was a roller coaster, out of control. I was confined to home by SBS. I would eat and have to use
the bathroom five minutes later.

I told my doctor, “I can’t live like this; this isn’t living. I don’t see my friends. I’m crying all the time.” Because I wasn’t able to absorb food or nutrients, I was placed on different forms of parenteral support, or PS. Monday through Saturday I had a large bag of clear saline solution and I had to administer the medications into the bag. The transfusion took 12 hours to complete. Then I had total parenteral nutrition (TPN) infusions at night. The infusions really limited my ability to get out of the house and be active. And when I did get out, I had to pack an emergency bag whenever I left the house in case I had an accident. I had cleaning supplies, garbage bags for soiled clothes, and clean clothing. It was so embarrassing having an accident when out with friends, shopping, going to the doctor, going to the dentist, going to the grocery store, mowing the lawn, or even talking to my neighbors. I didn’t know whether I should laugh or cry. I chose laughter because I was afraid to cry.

Starting An SBS Treatment

In May 2015, my determination and optimism were about at their limit when my doctor told me about a medication called GATTEX® (teduglutide) for subcutaneous injection. He told me I might be a good candidate to try GATTEX, which is a prescription medicine approved for use in adults and children 1 year of age and older with short bowel syndrome who need additional nutrition or fluids from intravenous (IV) feeding. This type of IV feeding is also known as parenteral support (PS). It is not known if GATTEX is safe and effective in children under 1 year of age.

We talked about the potential benefits and risks of the medication, including the risk of 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. Learning about these potential side effects led me to hesitate a bit, but I believed that if I didn’t try to treat my condition, it would remain the same or could even get worse. These are not all the possible side effects, so anyone considering GATTEX treatment should talk to their own healthcare professional or medical team. I weighed the risks and benefits, and my doctor and I decided together that I should start GATTEX.

Please continue reading for additional Important Safety Information.

Within six months, I was able to reduce my parenteral support (PS) with GATTEX, which meant less PS at night—with fewer accidents and more sleep. While this was my experience with GATTEX, others may have different treatment experiences. I still sometimes have uncontrolled bowel movements and I sleep on a pad. Because I still never know when an uncontrolled bowel movement may happen, I wear a pad if I’m going to be out of the house for a while, just in case. But I no longer have to carry a PS backpack with me. After being on GATTEX for a number of months, with the help and monitoring of my doctor, I was able to come off my PS. With less PS I was able to do things I enjoy.

I admit, I don’t love giving myself a shot every day. I always hesitate for a nanosecond and then surprise myself. Some days are easier than others. I do my shot at bedtime and rotate it around the four sections of my abdomen.

I can’t adequately describe my joy that GATTEX has worked well for me! Sure, I still have problems now and then, but really, who doesn’t have problems in life? It’s such a relief that I can leave home and enjoy the things I love! I travel, visit friends, go to the grocery store, play pickleball, and even golf!

If you’re diagnosed with SBS, don’t give up. There are times when I took life an hour at a time. I’d encourage you to focus on going forward. In my experience, it helps to have supportive friends and family, and a trusting relationship with the medical team helping you. My doctor has dietitians on staff and they work with my nutrition plan to help ensure I’m making good choices. My doctor orders tests to check my levels. If any of the results are “off,” I’m then advised of any changes that need to be made.

Today, I’ve hung up my Olympic medal for the bathroom dash and that’s just fine with me. I’ve faced the difficulties of living with short bowel syndrome and once again discovered hope, persistence, and laughter.

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.

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

What is GATTEX®?

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

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

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

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

©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-1644v1.0 08/25

 

Ostomy Anxiety: Horror in the Grocery Store?

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By Robin Glover

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

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

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

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

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

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

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

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

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

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

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

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

I try to carry tape with me everywhere I go.

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

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

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

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