Peggy: Her Short Bowel Syndrome Story

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Twenty-seven feet. That’s the length of a typical intestinal tract.
Twenty-seven inches…that’s all I have left of MY intestines.
But I didn’t lose more than 90 percent of my intestines all at once. My journey to a Short Bowel Syndrome (SBS) diagnosis is a long story, but one that I hope will help others feel less alone.

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
I was diagnosed with Crohn’s in my early teens. I was 23 when I had my first bowel resection and ileostomy. Over the next 35 years or so, a pattern developed: from Thanksgiving until Easter, I would become increasingly sick. For me that meant more Crohn’s-related pain, diarrhea, vomiting, and bleeding. I relied on my family, friends, and my doctors to help me manage through those tough times. I was able to graduate college Phi Beta Kappa, summa cum laude, earn a master’s degree in immunology, and become another of the many scientists in my family. But each year, I felt worse, and the symptoms lasted longer until, finally, I would need additional surgery to remove more diseased intestines. Before each operation, my surgeons would tell me they would need to remove just the minimum amount so I would not develop “Short Bowel Syndrome” or “SBS”. I didn’t understand their concerns. I kept thinking, “If they can remove all the bad parts and I end up with SBS, what’s the big deal? I’m already living with all these intestinal problems; it couldn’t be worse.” Or could it??

It got to the point where surgery was just buying me time. And it wasn’t quality time. I can’t even count how often my husband got up in the middle of the night to take me to the ER, and the hours he spent there with me. I had to stop working and go on disability. Added to the pain, diarrhea, and vomiting were more frequent bowel obstructions and fistulas. In my case, the fistulas could not be controlled or repaired. I needed major surgery to remove all the bits and pieces of reconnected intestines that were kinked, strictured and sticking, and patch up the areas where the fistulas had formed.

Major Surgery and an SBS Diagnosis
I had that surgery in August 2013 and had never been more terrified. A few days later, I was moved from the ICU to the “progressive care unit.” The image is still burned in my memory, my husband standing next to me. My surgeon stood in front of me and said, “You definitely have Short Bowel Syndrome now.” He gestured—held his hands in front of himself a bit more than hip-width apart. I thought he was just making a random gesture. “68 centimeters,” he said. That came to a little more than two feet.

I understood the part about my intestines being “shorter” but I didn’t yet understand that there was more to my SBS than just the length of my remaining intestines. I also had reduced function of my remaining intestines, meaning I wasn’t able to absorb enough nutrients from food and drink and needed to depend on parenteral support to maintain my health. This is sometimes referred to as SBS with intestinal failure, or “SBS-IF”.

I was not at all prepared for life with SBS. I was now receiving parenteral support (PS) in the form of two liters of IV hydration twice a week with magnesium and anti-diarrheal drugs. I was experiencing life-threatening electrolyte and mineral imbalances. Knowing I could die within hours if I couldn’t get adequately hydrated and get my electrolytes balanced was the most frightening thing to me. In fact, not two months after my surgery, I became so severely dehydrated that by the time I got to the ER my kidneys had shut down, and my potassium was so high I was on the verge of cardiac arrest. When I was able to sleep, I kept my fingers on my pulse. I was used to always looking for the nearest bathroom. Now, I was also looking for the nearest ER.

Partnering with my Doctor to Start SBS Treatment
There came a day when I finally cried with my doctor. He made some phone calls to colleagues to find out what they were doing to treat their SBS patients. On Christmas Eve, he called me excitedly to say he had learned that GATTEX® (teduglutide) for subcutaneous injection is a prescription medicine used in adults and children aged 1 year and older with Short Bowel Syndrome who need additional nutrition or fluids from intravenous (IV) feeding (parenteral support). We talked and, as part of that conversation, he encouraged me to read more about the possible benefits and serious risks, including making abnormal cells grow faster, polyps in the intestines, blockage of the bowel (intestines), swelling (inflammation) or blockage of your gallbladder or pancreas, and fluid overload.

Please continue reading for additional Important Safety Information.

After continuing to talk with my doctor about the possible side effects, I decided I would try it. A Takeda Patient Support nurse came to my home to show me how to prepare and measure my dose and give my GATTEX injection correctly. We practiced injecting on a dummy device. And then it was time to do the real thing. I remember how nervous I was, but what a feeling to be able to do this for myself!

Now, I take my GATTEX at night, right before bedtime. I rotate between four different injection sites on my body. I number the vials in my kit “1, 2, 3, 4” to remind me which spot to inject on which day. Under the supervision of my infusion nurse and my doctor, I was able to reduce my IV hydration from routinely getting two liters twice a week to regularly getting one liter once a week and, for a time, only receiving IV hydration on an as-needed basis. While this was true for me, not all people who take GATTEX will be able to reduce their weekly PS volume. I eventually had to start PS again. I do sometimes experience redness after injecting or notice a bloated feeling, and I have experienced some bowel blockages. I worked with my doctor to manage these side effects. He temporarily stopped GATTEX when I developed each bowel blockage and restarted GATTEX when they resolved. Again, this is my experience, and others may have different experiences with the medication.

I am glad I have a team of doctors I can trust, and who listen to me. I believe it’s important to educate yourself about treatment options, including the risks and benefits, and to communicate with your doctors when something isn’t working. My doctors continue to closely monitor me and adjust my medications, including all my electrolytes, minerals, and oral supplements. Overall, I am happy with my results.

I have learned many lessons through my life with serious illness, but I think one of the most important things I’ve learned is to be flexible. For me, this means being honest with myself and what I am physically capable of doing in a given day—to recognize that what I can do today might be different from what I could to do the day before. Nowadays, I try not to push myself beyond my limits.

And there’s one more thing I’m doing for myself: I’m sharing my experiences with others. For so long, I was not involved with the Short Bowel Syndrome community. Friends and family are wonderful, but I think it’s important to find a network of people who have been through similar experiences. For me, the people who truly understand what I’ve been through have helped me come out from the shadows, and I am happy with who I am.

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.

GATTEX and the GATTEX Logo are registered trademarks of Takeda Pharmaceuticals U.S.A., Inc. TAKEDA and the TAKEDA Logo are registered trademarks of Takeda Pharmaceutical Company Limited. ©2024 Takeda Pharmaceuticals U.S.A., Inc. All rights reserved. 1-877-TAKEDA-7 (1-877-825-3327). US-TED-1399v3.0 10/24

Embracing Life After Surgery 

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Before cancer came into my life, I was a very social person. My various professional ventures along with the diverse group of friends kept me on the go. Even though I dealt with anxiety it was mild enough that I was still a social butterfly.  

I was diagnosed with anal cancer on May 5, 2015, that’s Cinco de Mayo. We had the day planned, going to the groceries for Taco & Nacho Day. Watch mindless shows and spend the day together.  

Much like others like me, your caregiver becomes your world.

We were three years into our relationship, and this was not on our Bingo card of relationships… Or was it? That whole summer was spent in bed or on the couch sleeping. I couldn’t stand a lot of smells or people- so not much socializing.  

Much like others like me, your caregiver becomes your world. You are dependent on them for food, medical needs, and conversation. Chrisitan, my boyfriend, was all that and more. He was also my punching bag and took all my frustration and honestly, I don’t know where he put that energy.

It made our relationship stronger; it tested the relationship and us. He also helped me get back into the real world easier although it takes the caregiver longer to step out of his role. I don’t know if they ever leave completely.  

It took almost six months to decide or be convinced for the ostomy surgery. I had done hyperbaric chamber treatment, and we were hoping things would heal. We expected a miracle. My sphincter would not grow back.  

Diapers were not very convenient for work. I traveled quite a bit and changing on the go was a pain in the butt. Those changing tables in the bathroom don’t hold an adult! I finally picked a date for the surgery.  

My surgery was scheduled for April 1, 2016. If that date sounds familiar it’s because it’s April Fool’s Day. Yes, my surgery was a joke, and I wasn’t laughing. I didn’t have a mentor, buddy or a nurse to tell me what to do. My brain was in constant conflict between I don’t want anyone to see me, and I need to get back out in front of people. I wanted to act, public speak, or at best go shopping and try on clothes.

Go through the feelings and emotions. I denied that anything happened, got very angry, negotiated with my higher power, still dealt with a bit of depression, and I’ve accepted that this is my reality. It has allowed me to move forward faster.  

When I first started to go out in public, I would use surgical tape and bind my bag down. I was sure that if I taped it hard enough it would go away. I felt so self-conscious that I would wear shirts one size larger.

Then one day, in a support group, I heard about wraps. I had to look up this miracle device that would give me back my manly figure. As if they were security secrets that you had to find through a scavenger hunt.

I felt confident, strong, and back to me… Kinda. I felt like a piggy bank and that everyone was looking at my belly. Finally, Tommy the Ostomy and I had worked out the kinks, made peace, and became frenemies… Kinda.

Eight years later I am out more, I travel more, and still panic a bit. Tommy still manages to surprise me from time to time. Almost every day I put on my belly-bra to keep things tight and snug, and I watch my weight so things don’t pop out.

I still get panic attacks, I still think everyone is looking at me, and I still think I’ll wake up and It’ll be gone. Except I have more self-esteem, I share my story, and I look great in a tight shirt and jeans!

If I could share any words of wisdom if a new ostomate it would be go hunting online for patient stories and trusted information like this website. Find a support group and ask as many questions as pop in your head. Some things you’ll learn on your own but we’re here to help.

Another thing, go through the feelings and emotions. I denied that anything happened, got very angry, negotiated with my higher power, still dealt with a bit of depression, and I’ve accepted that this is my reality. It has allowed me to move forward faster.  

JoAnna’s Story: Coming Out of The Shadows

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For as long as I can remember, I have found myself fitting in amongst groups of people who don’t stereotypically “fit in.” I recognized early on that because I had an absent lifestyle, consisting of traveling hours away to cities with hospitals and specialists unavailable to me in western Kentucky, it gave me the freedom to be invisible.

I was born on a crisp, autumn Friday in September 1991. My mom’s earliest indication something wasn’t right was a large bruise that developed on my lower back, days after I was born. However, her concern was met instead with my pediatrician looking into her eyes and saying, “Some babies are just born special!” Special comes in many forms. For me, that included a mature, type 4 Sacrococcyxgeal Teratoma. This just means I had a slow-growing tumor that wreaked havoc on the organs surrounding the sacrum and coccyx and went undiagnosed because no one could see it.

In a world where it is easy to stay isolated and afraid of connection, I have found some of my closest companions were waiting for the same opportunity; hiding away behind their shields of invisibility.

A steady decline in my ability to hold my bowel and bladder, beginning well after potty training, was the next signal that I had something going on. However, it was not until I was seven when the tumor abscessed, that my childhood was shifted into a very real, life-long game of “Operation.” During my third Teratoma resection at the age of 14, my new colorectal surgeon advised that a temporary ileostomy would be needed to allow everything time to heal. Fortunately, the surgery was in May so I had the summer months to hide away as I wanted to.

JoAnna with her best friend Caleb whom she met at Youth Rally at is a natural companion whether attending a UOAA National Conference or a Pride Celebration.

I started my sophomore year of high school with the ileostomy, and having only had it two months at the time with little self-management, I resorted to staying home from school most days for the remaining two months until it was reversed. I found a bit more normalcy in my teen years, discovering friends with similar interests and personalities and things in their own lives making them special to distract from my ability to fade in and out of view.

A few years later, just before my 18th birthday, I left home to attend college in Tennessee. It was a new world and I could be anyone I choose. For the first time, I wanted to be fully present in every moment and not miss a thing. In reality, I spent what I remember feeling like almost all of my first semester of college writing papers while sitting on the toilet of a shared dorm suite. Through discussion with my surgeon and with the understanding that I didn’t want to hide away anymore, I decided it was time for a permanent colostomy in 2009. Not only did this decision provide the opportunity to be present and live life to the fullest but also allowed for new purpose and adventures, all on its own.

It was in 2011, attending my first year as a Counselor In Training at Youth Rally, which is THE camp for young people with bladder and bowel dysfunctions here in the US, that I was included with a group of counselors and campers affectionately labeled by the members as “The Island of Misfit Toys.” Truthfully, we were just the miscellaneous diagnoses group that didn’t have enough members separately to each have our own. The symbolism of being a misfit toy, that found belonging and purpose in a group of other misfits, has continued throughout almost every social group that I have been a part of.

The beauty of events like Youth Rally, as well as the UOAA Conference, is providing a safe place to build community without fear of judgment for identifying in a way that is taboo or sometimes uncomfortable to discuss. In a world where it is easy to stay isolated and afraid of connection, I have found some of my closest companions were waiting for the same opportunity; hiding away behind their shields of invisibility.

Not only had I grown into a person who wanted to be known and accepted, but more importantly, I wanted to be chosen and loved. I grew up as a girl in the Bible Belt, with the idea that someday I would find a man who would love me and my ostomy, and then everything else in the world would make sense. Intimacy was scarce, considering my body confidence issues, so I resolved to wait. I had faith that my person would come along and I would know when it was right. Just as I had spent other portions of life in the shadows, wishing and waiting for my moment to come, it would probably surprise no one that another place that I had stowed away was inside “the closet.”

Like my experience in the Ostomy community, identifying as a member of the LGBTQIA+ community has provided a safe place to be authentic and explore who I am and want to be as a person and partner. The intersection at which these identities meet has given opportunity to some of the most profound and pivotal moments in my life. It would then also not be surprising that I attended Pride celebrations before and after “coming out” with my best friend, Caleb, whom I met while we were both first-year Counselors in Training at Youth Rally. He is the same friend that I invited to join me at the UOAA Conference as it made its way to my current city, his hometown, this past year. In our truest fashion, I am happy to say we show up loud, proud, and ready to make our place in the world; no matter the occasion.

I work daily to overcome my old habits of hiding away, having to refocus to remember that the life that I have created was done only by my participating fully. On the difficult days when I have trouble seeing for myself, I am blessed with friends and a partner who assist with some needed perspective. I aspire to be the same for every person I meet.

So, in case you are new here; no matter how you identify…

Hi! I am JoAnna and I am glad you are here.

 

Ostomy Advocate Makes a Splash in Commercial

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Advertising students at BYU put a spotlight on ostomy awareness in creative commercial. 

The students could focus on anything they wanted for a final advertising project at Brigham Young University in Utah, but they knew they wanted it to be meaningful. After spending days thinking about a direction for the project Art Director Jane Reese and Copywriter Nate Nielson made a connection that they both had family members with ostomies. “We didn’t know until we were much older because they were very private about it and it felt like some kind of “secret”. That’s when we came up with the idea of “uncovering” your story,” says Nielson of the ad they conceived with the brand Hanes in mind.

Jane Reese has had eight family members with a colostomy. “A lot of people do not know what they are and we wanted to spread awareness and help do whatever we could,” Reese said during a break in the filming.

“We wanted the ad to highlight the emotion that our family members felt and at the same time illustrate that it’s normal to have medical conditions and no one should feel embarrassed or shamed by them,” Nielson says.

When Nate Hadlock, who is a member of UOAA’s Patient Advisory Board learned about the project he jumped at the opportunity to be involved.

“Ostomies often change a lot about a person’s life and how they view themselves, so seeing a beautiful video like this, along with the overwhelmingly positive response to it, can give ostomates new courage and confidence,” Hadlock believes.

The beautifully produced film project features Hadlock and several other ostomates living life to the fullest. Hadlock is seen in the commercial diving and gliding through the water swimming while wearing a Stealthbelt cover over his ostomy pouch. The image itself is powerful because of the hesitancy some ostomates may experience because of misinformation about swimming with an ostomy.

“I am extremely grateful that I was able to be a part of this project. The actual film day of making the ad was so much fun! The students could not have been more professional or treated me better. It was a special moment in my life! ” Hadlock says.

Hanes-Uncover Your Story from jane reese on Vimeo.

Nielson credits getting Hadlock on board with encouraging other people to be featured in the project. We wanted to show people of all backgrounds, because these conditions, can affect anybody,” Nielson says.

A voiceover of the Maya Angelou Poem ‘One Human Family’ is featured in the ad and reminds us that we are “more alike than we are unalike.”

“Though we all have different marks, scars, and stories, underneath we are all human. Everyone deserves to be proud of who they are,” Reese said of the project on a post on LinkedIn.

Hadlock feels that the message of the ad itself and the project as a whole can really help with ostomy awareness. “Ostomates need to see that they belong in this world as much as anyone else. If I had seen this ad 14 years ago, when I received my ileostomy, it would have changed my entire outlook on ostomy life and what I was going through,” he says.

In a YouTube video Hadlock shares a special behind-the-scenes look at the filming and more reflections on the project in the context of the often negative portrayals of ostomies on TV and in popular culture.

“Ostomies often change a lot about a person’s life and how they view themselves, so seeing a beautiful video like this, along with the overwhelmingly positive response to it, can give ostomates new courage and confidence,” Hadlock believes.

I have already been contacted by multiple people about how this “ad” has legitimately helped them, or somebody they know! Hopefully, ostomates who see this will realize, even if only a little bit more, that they are beautiful, capable, worthy of love, and definitely not alone.”

Other students who worked on the film came away with a new understanding of the ostomy community.

“I had my eyes opened to a whole other world- a world that so many around me live in daily, but that I had no idea of its existence. I was able to meet amazing people who shared with us their journey with an ostomy. If you are struggling with shame, embarrassment or any other thing because of your ostomy, know this: you are SO strong and you are capable of anything you put your mind to! “ says director Taylor Steadman.

Though the company Hanes was not involved in this project the ad has the look and feel of a full-scale professional production and is a credit to the talents of the student team.

“We wanted the ad to highlight the emotion that our family members felt and at the same time illustrate that it’s normal to have medical conditions and no one should feel embarrassed or shamed by them,” Nielson says.

“I’m very grateful for the opportunity to work on such an important project, and I hope that my cinematic choices made in this commercial helped capture the experiences and feelings of these incredible individuals,” said Spencer Nelson, Director of Photography.

Hadlock feels that helping with this project was a chance to do something uniquely meaningful. “I spent decades not wanting to ask for help or talk about the medical side of my life with anyone. However, becoming more active in this community has taught me so much and truly changed my life. I have also seen the tangible and intangible ways that my own advocacy can help others.”

That’s why I’m grateful to be involved in advocacy efforts with UOAA and why I plan to be a part of many more projects like this video in the future,” says Hadlock.

Steve Hubbard’s Ostomy and Crohn’s Story

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I’m 75 years old and this is my 56th year of living with Crohn’s disease and an ileostomy.

I first started getting sick at 18 years old in 1967 right after graduating from high school. I was starting to get weak all the time, losing weight, couldn’t eat without getting sick and there was blood in my stool. My parents took me to the University of Stanford Medical Center.

The doctors there weren’t sure what was causing me to be so sick. I was down to around 65 lbs and so weak. They thought it was ulcerative colitis and they began treating it as such. When I wasn’t improving they called in a Colitis and Crohn’s specialist that was visiting the hospital from Germany. He diagnosed it as Crohn’s disease and started treatment right away by injecting a lot of steroids into me to help me gain the weight I needed for the first operation. Because I was so young they tried removing small sections of my colon at a time hoping they wouldn’t have to fit me with an ostomy.

The flange was made was solid rubber and it came with see-through plastic bags. The ostomy equipment nowadays is truly a godsend.

(Steve with his two daughters at his grandson’s wedding)

I had to stay in the hospital for around three months after each operation but after four major surgeries within two years time, I was finally fitted with my ostomy. After receiving my ostomy I was devastated because I was an athlete in school and didn’t know if I’d be ok to play sports or other things I loved to do again.

In the sixties having an ostomy was something kind of new and the only ostomy equipment we could find required a drive that was over two hours away. The flange was made was solid rubber and it came with see-through plastic bags. The ostomy equipment nowadays is truly a godsend.

By 1970, I had recuperated enough to get married. In 1972 we moved to San Diego after my first child was born. Then in 1973, I began to get very,very sick. With input from the WOCN specialist, they realized that they had to reconstruct and move my ileostomy to a different location on my lower belly.

After I woke up from the operation there was a priest next to my bed. He told me that he was giving me my Last Rites because I had passed away during the operation.

My mission has always been to never give up on anything and not use my ostomy as an excuse.

I recuperated and then my second child was born in 1974. After everything that I’ve lived through, here I am at 75 with two kids, two grandkids and two great-grandkids.

I played so many different sports with my ostomy including water skiing, kayaking and tennis. My mission has always been to never give up on anything and not use my ostomy as an excuse.

I hope this inspires people with an ostomy to never give up so you too can live a full life. I have no regrets. Ostomies are life-savers.

Osmani Gonzalez’s Story

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Surviving colorectal cancer, reversal complications, and living with faith & perseverance

In June 2018, Osmani Gonzalez began a new exercise program to help him lose weight and kickstart a healthier lifestyle. Two months into his new routine, the then 42-year-old began to experience abdominal pain. Gonzalez assumed it was due to his workouts, but the pain foreshadowed a much more severe issue.

His discomfort only worsened over time, and in August 2018, Gonzalez, who was born in Havana, Cuba, and raised in Hialeah, Florida, was rushed to a nearby hospital with a swollen abdomen.

To alleviate his pain and to clear an obstruction in his colon, he underwent surgery for an ileostomy. During this procedure, surgeons build an opening in the abdominal wall by bringing the end of the small intestine out onto the surface of the skin, creating an opening for his intestinal waste to pass through into an ostomy bag attached to his abdomen. Unfortunately, the news that came after his procedure was not favorable – Gonzalez was diagnosed with Stage 2 colon cancer.

He cried along with his wife of 23 years Aleida, and despite not knowing what they were getting into remembers them saying, “We are going to fight it, good or bad we will try our best.”

Gonzalez thinks patients should also find time to have empathy for others. “It’s so important to understand the caregiver and ask how they are doing and to never forget that they are going through similar things,” Gonzalez says. He received 12 sessions of chemotherapy for six months. While in the hospital for treatment during the Christmas Holiday Gonzalez, who is an advocate and speaker for father engagement in K through 12 education and active in several area PTA’s where he raised two children, had an idea to bring some cheer to fellow patients by having local children draw cards of support to his fellow patients.

Gonzalez’s cancer went into remission and was told he no longer needed the ostomy.

In February 2019, Gonzalez underwent reversal surgery. However, three days after the procedure, he woke up in horrible pain, and a CT scan revealed there was a leak in his intestine and his staples had come undone. After the blood system was contaminated, Gonzalez was diagnosed with sepsis shock and had to undergo another surgery to have an ileostomy again. Afterward, Mr. Gonzalez was put in a medically induced coma for 18 days.

“At that point, my wife was given very little hope and was told just to pray and prepare for the worst,” Gonzalez said.

When he woke up from the coma, he began occupational and physical therapies and was on an IV drip to help alleviate his constant dehydration. Gonzalez learned to walk and perform basic physical activities. He used a wheelchair for more than three months while he recovered.

Even with the support he was receiving, Gonzalez’s kidneys began to fail. During one of his many trips to the ER, a gastroenterologist suspected he was suffering from short bowel syndrome, a condition in which your body is unable to absorb enough nutrients from the foods you eat because you do not have enough intestine.

“We all have downs and need motivation. Whatever it is you grab onto, you have to have a why and decide to live.”

Gonzalez was rushed to the Hospital’s emergency department and referred to a well-known trauma surgeon and surgical critical care specialist. “He came weighing 176 pounds, and in six months, he kept losing even more weight,” Gonzales recalls the doctor saying. “We only had 125 centimeters of small intestine to stabilize him.”

For Gonzalez to get better, the Doctor placed him on Total Parenteral Nutrition (TPN) so his body could receive the nutrition needed to strengthen his intestines. Over the next two years, Gonzalez continued receiving TPN and seeing the Doctor biweekly, undergoing continuous lab work to monitor his progress.

Despite frequent challenges with ostomy leaks and TPN he would go out fishing and continued to push himself to do things he loved. He remembers one time after a shower attempting to stop an active stoma with his hand and making quite a mess, “My wife just said it’s better laughing than crying,” he recalls with a smile.

On June 25, 2021, he was taken off the TPN and underwent a successful reversal surgery to repair his intestines, clean up scar tissue, and remove the stoma.

On July 9, he went home with a feeding tube and by September 13, he was on a regular and independent diet. His doctor told him, “He’s been one of the most optimistic patients I have ever cared for.”

While going through this medical journey, Gonzalez had to reduce his workflow with his construction company to focus on his health. Mr. Gonzalez is currently enrolled in a program slowly allowing him to join the workforce again. He has been working in construction management and is gradually entering a more active lifestyle.

“I look at life differently now. My focus is improving daily and being more involved in my kids’ lives,” Gonzalez said. “I’m extremely grateful to the Doctor and my care team at the hospital for performing this miracle.”

Gonzalez has expressed what a blessing it has been to have met Lynn Wolfson of the South Florida Ostomy and Tube Feeding/HPN Support Group, which provides support and comfort to other ostomy patients and guides patients through their journey of living with these conditions.

Gonzalez recently had the chance to share his story with the group and UOAA followers around the country on a Zoom presentation. He stressed the mental aspects of recovery and looking beyond day-to-day challenges.

“Keep pushing and do what you love, sometimes even when you don’t want to do something, once you start the process your feelings change,” Gonzalez says. “We all have downs and need motivation. Whatever it is you grab onto, you have to have a why and decide to live.”

Ostomy Advocates Taking Action in Washington, DC for Digestive Diseases

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By Jeanine Gleba UOAA Advocacy Manager

Each year the Digestive Disease National Coalition (DDNC) hosts a Spring Public Policy Forum.  UOAA has been a member of this coalition for many years starting with our co-founder the late Linda Auckett.  DDNC’s mission is to work cooperatively to improve access to and the quality of digestive disease health care to promote the best possible medical outcome and quality of life for current and future patients.  Many in the ostomy community brought them to this surgery because of digestive medical conditions such as colon cancer and inflammatory bowel disease.

As the current Chairperson of the DDNC, I was especially proud of this year’s 34th Spring Public Policy Forum that was held March 3-4.  The coalition’s consulting team at Health Medicine Council worked tirelessly to ensure its success.  This year we were back to an all-in-person event with about 85 attendees representing 17 states. 

On Sunday afternoon patient advocates and coalition members represented organizations such as the Crohn’s and Colitis Foundation, Celiac Disease Foundation, The Oley Foundation, and the National Pancreas Foundation and gastroenterologists from numerous state societies. 

Team MA, NJ, NY advocating on Capitol Hill from left, Daniel Morgan (Mission Cure), Corey Greenbalt (Global Healthy Living Foundation), Emilie Schlitt (WOCN Society), Keyla Caba (UOAA), Sean McCabe (Legislative Director for Congressman Anthony D’Esposito), Jeanine Gleba (UOAA), Lisa Metzger (Oley Foundation), Dr. Maurice Cerulli (American Gastroenterological Association); in the back row Jane Holt (National Pancreas Foundation)

Featured presentations included the FDA, National Institutes of Health, All Copays Count Coalition, National Organization for Rare Diseases and the American Association for Cancer Research.  A special highlight of the afternoon was hearing the patient perspective from UOAA’s patient advocate Keyla Caba and the things she advocates for. Later that evening attendees had a networking opportunity at a cocktail reception. 

“I know my doctors have been very excited to know that patient voices and experiences in the digestive community are being shared with our legislators to impact & hopefully pass relevant Acts.” – Jennifer Locane (FL)

Monday morning we walked over to Capitol Hill and advocated for the DDNC public policy priorities in our respective state Congressional offices.  The morning started with breakfast in the Rayburn Building where myself and DDNC President Dr. Carroll Koscheski presented several awards including the Lifetime Achievement Award to Dale Dirks.  He has been working with the DDNC since its inception with founder Susan Rosenthal in the early 1980s.  

From left, Dr. Carroll Koscheski (President DDNC), Dale Dirks, Jeanine Gleba (Chairwoman DDNC

In the visits with staffers we continued to push for medical research funding and passage of the Safe Step Act (S. 652/H.R. 2630) and the HELP Copays Act (S. 1375/H.R. 830) along with the Medical Nutrition Therapy Act (S. 3297/H.R. 6407).  They are widely co-sponsored in a bipartisan way and stand a good chance of passage this session in Congress and we shared the impact on the ostomy community. The ostomy advocates also had an opportunity to discuss the negative impact of non-medical switching of ostomy supplies, a cost-shifting tactic. We also advocated for Medicare coverage of fistula supplies.  

This year there were quite a few ostomy advocates in attendance including Past President Susan Burns and UOAA Board of Director Lynn Wolfson, and Ashley Mann also representing FOW-USA. The WOCN Society also had a certified ostomy nurse, Emilie Schlitt (CWOCN), in attendance.  I was lucky that she was on my team.  I couldn’t help but notice that in all of the meetings I attended not a single staffer knew what an ostomy was, so it was a great teachable moment for us!

One of the new ostomy advocates, Jennifer Locane (FL), made the following comment to me about her experience joining us this year:

“I know my doctors have been very excited to know that patient voices and experiences in the digestive community are being shared with our legislators to impact & hopefully pass relevant Acts. It’s a blessing to do something good with all this pain, suffering, and experience & to make friends in the process!”

It’s because of sharing our collective patient stories annually that the DDNC continues to sustain progress on ensuring funding for research, public health, and treatment development, and on their coverage and access priorities. Together we do make a difference.

Ostomy Advocates in the ‘Room Where it Happens’

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“One person can make a difference, and everyone should try.”
– President John F. Kennedy

By UOAA Advocacy Manager Jeanine Gleba
UOAA Executive Director Christine Ryan

During UOAA’s annual call to action in 2023 for state proclamations recognizing Ostomy Awareness Day, one of our advocates, Anne Iahdini, a fellow ostomate living in Massachusetts, contacted her State Representative, Rob Consalvo, and so the snowball effect began. Representative Consalvo’s legislative aide Emily Carraro responded with a resounding ‘yes’, resulting in a resolution being adopted by the Massachusetts House of Representatives on October 2, 2023.  But they didn’t stop there.  The Office of Representative Consalvo extended an invitation to host a special ostomy educational/awareness event at the Massachusetts state capitol in Boston. Anne reached out to UOAA for support with planning the event.  

Photo from left to right Sarah Tompson, Keyla Caba, Representative Rob Consalvo, Representative Kate Donaghue, Representative Paul Donato, Christine Ryan, Ava Hosea, Sophie Harmon; Photo courtesy of Emily Carrara in the Office of Rep. Consalvo

After many months of planning and coordinating, several extraordinary ostomy advocates (Keyla Caba, Sophie Harmon, Ava Hosea and Sherry Thomas), one passionate certified WOC nurse (Sarah Thompson), and UOAA Executive Director, Christine Ryan, brought down the house on January 31, 2024, that is the Massachusetts State House, with their informative and inspiring presentation!  The audience was filled with several Massachusetts legislators and/or their staffers from both the Senate and House of Representatives, WOC nurse supporters and other ostomates from around the state. 

The group provided light refreshments for the audience, UOAA materials and gave a  presentation that offered a brief overview of ostomy surgery and ostomy supplies along with challenges and issues that many living with an ostomy face. UOAA created a fact sheet handout for the event entitled “Access Matters” that included some of the “Bay-stater” patient testimonials. For example, Keyla shared “Having an ostomy is hard enough. Add insurance denials, costs, and access to the journey it becomes an added stressor to having a device. Not knowing if I will have enough supplies at the end of the month gives me anxiety. Not knowing if I am going to receive the correct amount of supplies every month is like opening a box of chocolates. I never know what I will get.” 

Photo from left to right ostomy advocates Sophie Harmon, Keyla Caba and Ava Hosea; Courtesy of Keyla Caba

Christine also read a letter that UOAA received from Massachusetts resident James McNiff, a disabled marine corps veteran who was diagnosed with bladder cancer at Camp Lejeune while in service of his country and now lives with a permanent urostomy.

Each young woman spoke from the heart sharing their personal story and the challenges they experience with access to their ostomy supplies and the stigma faced living with an ostomy.  For example, Ava explained that she has to put medications through a feeding tube into her distal stoma two times per day. This requires two ostomy pouches per day, which is sixty per month. Her insurer MassHealth WellSense has an approved quantity of 20 per month. Her prescription gets denied every year and has to be appealed several times. She has been shorted ostomy pouches so often that she has had to make them using Ziploc Freezer Bags and medical tape on numerous occasions. The average resolution time for insurance denials has been 5-6 months before they can stop making telephone calls and her ongoing orders are correct. “This disrupts critical continuous care and causes undue emotional stress to people already going through physical duress.”

Sophie focused on the importance of emotional support and shared that she has experienced both prejudice and ignorance towards her ostomy and this takes a large toll on mental health. “Emotional support can be just as important as physical support in ostomy aftercare. The stigma around ostomies must end with increasing education and awareness.” 

The little snowball is gaining momentum and ostomates in Massachusetts are making a difference! 

The speakers stressed that positive patient outcomes depend on having the right ostomy supplies at all times. They should be given the same degree of urgency as medications. Their passion, expressing their desire for change, not only for themselves, but fellow ostomates who experience similar issues, moved many in the room.

They asked their elected officials to introduce and support legislation in the Commonwealth that would make the insurance approval process for ostomy supplies and medications easier for ostomates. 

They received an overwhelming response from the audience and Representative Consalvo is going to work with the advocates this year to introduce legislation in 2025 to make improvements in regards to access to ostomy care and access to supplies. If this legislation passes, it could become a model for other states.

The little snowball is gaining momentum and ostomates in Massachusetts are making a difference! 

UOAA would like to personally thank everyone from the ostomy community who attended this event, especially our patient advocates who were willing to share their very personal journey and struggles, and Anne Iahdini, who took the first step to make this happen.

UOAA has received enthusiastic feedback from this successful advocacy event. If anyone is interested in spearheading a similar event in their state, please contact UOAA Advocacy Manager, Jeanine Gleba, at advocacy@ostomy.org. Guidelines will be made available later in the year.

Victor’s Ostomy Story

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Choosing Ostomy Surgery

Before I got diagnosed with ulcerative colitis, I had zero health issues throughout my life, except for high blood pressure. Fast forward to age 26 and I started experiencing a lot of blood in my stool with no idea why. I can be a stubborn person so I didn’t tell anyone what was happening; not even the people closest to me. A few months went by and my mother noticed blood in the toilet pretty consistently and asked me about it. I told her that it had been going on for months and that I didn’t know why.

We ended up going to our local gastroenterologist and they did tests and I got diagnosed with ulcerative colitis. Obviously, I had no idea what it was but he said that I would need to change my diet and to watch what I eat. Fast forward a year or more and I had already been through two GIs and I was being sent to another. They said that I had a very severe case of ulcerative colitis. Meanwhile, around two years in I lost the ability to be able to hold my bowels in for longer than a few seconds. I was miserable, had lost a lot of weight, and also a lot of “friends”. This was also all happening during the COVID pandemic so I wasn’t able to see my doctors in person.

The final year before I got surgery I had lost 40-50 pounds, had been to the emergency department  countless times, as well as hospitalized 3-4 times. I ended up being super anemic and needed iron infusions as well as one blood infusion. That last year was the final straw. The summer of 2021 I ended up losing my bowels on myself 40+ times on my 20-minute drive home from work. I told my boss I couldn’t work anymore and that’s when I first heard about ostomies and started researching. I didn’t know what an ostomy bag was before then but after joining a subreddit on Reddit called r/Ostomy I started to see that an ostomy was the answer to my problem.

I went to my GI and told him that I’m done trying medicine, I’m done not being able to go out and experience life, I’m done with prednisone (which was wrecking my body), and  I’m done being physically, mentally, and spiritually drained. I was completely broken. He said that all he could do was refer me to a surgeon. I arrived at the surgeon’s office begging him for surgery and he said “I’ve never had a patient come into my office practically begging me for surgery, so yes we can do it.”

Getting an ostomy completely changed my life but I didn’t let it completely change me.

Two months later I was walking in for a total colectomy and a placement of a stoma. I was afraid but I knew I couldn’t keep living the way I was. So February 21 of 2022 I got Stoma Steve. It only took a few weeks to know that I made the right decision. I felt better immediately. Luckily, I had a lot of help between my spirituality, my support network, my family, the subreddit r/Ostomy, and the surgeon’s office. I couldn’t have done it alone.

I didn’t want to mention this because I didn’t want it to be a focal point of my story, but at the time of my surgery I had over 5+ years clean from ALL mood or mind-altering chemicals so I didn’t go home from the hospital with any medicine besides Tylenol. Honestly, the recovery wasn’t bad but only a short few months after I developed a prolapse of my stoma. It was a big one but it wasn’t affecting my daily life (besides the anxiety it caused me) so they opted to wait to fix it until I decided whether or not I wanted to keep the stoma forever or get a reversal.

I want to be able to share with people that just because I have something like an ostomy doesn’t mean I can’t do the things I love. Being a bright light in a horrible disease is a blessing for me.

I researched reversals and with the help of family decided that I was going to keep the ostomy bag. So on January 10th of 2023 I got my rectum and anus removed and they fixed my stoma prolapse. Again, the recovery wasn’t bad but this time the hospital stay was horrible. I ended up getting straight cathed three times, I had an NG tube placed because Stoma Steve wasn’t pushing food out and my drain was bothering me for the month I had it. Again, I can’t thank the subreddit r/Ostomy enough because they were who I vented to and talked to for help and coping strategies because no one in my life except them knew what I was going through.

My Ostomy bag and stoma has saved my life. This year has been one of the best years of my life. I explored nature, started exercising, running/walking 5ks, fishing more, cycling, and many other things. I’m a Patient Care Technician in the Behavioral Health Unit in my local hospital. I love being able to help people on a daily basis. Being able to fulfill my purpose; which is helping other people, brings me joy daily. That is why I want to share my story.

I did no know about UOAA until I became interested in wanting to share my story and researched how to get involved with advocacy and sharing about ostomies. I would love to do the Run for Resilience Ostomy 5K on World Ostomy Day this year and get more involved with the UOAA community.

Getting an ostomy completely changed my life but I didn’t let it completely change me. A lot of people don’t understand why I’m so positive and happy most of the time. It is because I have been through a lot in my short 30 years of life and I don’t want to let the bad things outweigh the good things. I want to be able to share with people that just because I have something like an ostomy doesn’t mean I can’t do the things I love. Being a bright light in a horrible disease is a blessing for me.

Thank you for reading!!

Caring for an Ostomate with Memory Loss

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By Sarah Biggart (Convatec me+™)

Frequently I speak to callers about the challenges of caring for an ostomate with memory loss. Often time, people who were previously self-sufficient, independent ostomates become pre-occupied with their pouch; sometimes even pulling on it, which could cause numerous issues1,2.

This could be in the future for some of us, and a reality some caregivers are facing now as they care for and support loved ones.

If you are assisting a loved one, and you see them tugging, pulling, scratching or playing with their appliance, the first thing you should consider is that there may be a reason for this behavior. Their peristomal skin may be itching or burning, or they might be experiencing pain or discomfort around the stoma3. For someone who may have trouble communicating, this could be their way of letting you know something is wrong.

If this is a new behavior, contact your local ostomy nurse or healthcare provider. It’s important to rule out any medical issues they may be experiencing.

If the issue is determined to be purely behavioral, we have some suggested tips and tricks that may help as you care for and support your loved one.

Pouch Change Tips1,2,3:

  • Create a safe, relaxed environment. Take your cues from your loved one considering where they are the most comfortable. Maybe instead of standing in the bathroom, try laying down on the bed with soothing music or a favorite show playing in the background.
  • If evenings can be tough, a morning pouch change before eating breakfast may make more sense for you.
  • Keep ostomy supplies organized and clearly labeled for people who may be able to handle pouch changes independently or for rotating caregivers.
  • Use a calendar or the My Ostomy Journey App to track pouch changes. Do not wait until there is a leak to change the pouch. A leaking pouch may contribute to skin breakdown issues.
  • It may be necessary to store pastes, powders and sprays securely, as patients may attempt to tamper with or ingest these items.
  • Try ostomy accessories designed to simplify pouch changes.

Daily Living Tips1,2,3:

  • Many people with memory loss find comfort in routine. Find a rhythm to ostomy related tasks, such as emptying the pouch, and use the same verbiage each time to bring familiarity. Coordinate with the entire care team to ensure everyone is aligned with using similar language and prompts.
  • Staying occupied may help with keeping hands away from the pouching system. Things like puzzles, sorting items and folding something, may be just the thing to help.
  • Try an Ostomy wrap. Employing the “Out of Sight, Out of Mind” principal, a wrap helps to keep the pouch concealed and supported. A good ostomy wrap is made from a soft and stretchy wicking fabric and helps to keep sweat and moisture away from the skin and the wearer cool and comfortable.

Feeling isolated while providing care for loved ones is a common challenge, we encourage utilizing groups for ostomy support.

And remember that caregivers need care too. You may find comfort in your local Ostomy Support group Find one near you on the UOAA support group finder: https://www.ostomy.org/support-group-finder/.

 

Ruth and her family were confused and stressed when they had to take on the care of their 99-year- old mother’s ostomy.

“My mother has had a colostomy for nearly 60 years. She is now 99 years old with dementia, but had been independently keeping up with her stoma and pouch until just a few years ago. When family members started taking on the task of assisting her, we had to scramble to get up-to-speed since we never paid attention to the details of changing her “appliance” or emptying and re-closing the pouch.”

Ruth connected with me+™ to learn more about how to use ostomy products and accessories, and received follow up product samples and ongoing support.

“Erica was compassionate, truly listened to the problems we were encountering with my mother’s situation, and suggested products that addressed each of those challenges. The bottom line is Erica made me feel supported in my mother’s care, and that she cared that our family wanted my mother’s quality of life upheld when other healthcare providers wrote her off due to her age and mental condition. Erica contributed to us honoring my mother’s wonderfully rich and productive life at a time when that’s not evident to a stranger’s eye. We are so grateful for the support we’ve received through Convatec’s me+ Clinical Support Nurse Team.”

 

If you have questions about product sampling or nurse support available through the me+™ program, please contact us at 1-800-422-2211 or cic@convatec.com.  We look forward to helping you soon.

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.

References:

  1. DementiaUK, Caring for a person with a Stoma and Dementia. https://www.dementiauk.org/information-and-support/health-advice/caring-for-a-person-with-a-stoma-and-dementia/. Accessed November 13th, 2023.
  2. United Ostomy Associations of America, Inc, Dementia Stoma Care. https://www.ostomy.org/dementia-stoma-care/. Accessed November 13th, 2023.
  3. McGrogan M. How holistic assessment and appropriate product selection will enhance quality of life for ostomates with cognitive impairment. WCET® Journal 2021;41(1):33-35