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.”

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!!

Lori’s story: Living with Crohn’s Disease, Ostomy, and Short Bowel Syndrome

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Having lived with Crohn’s disease for 43 years, and an ostomy for 35, Lori Plung had known it was possible she would go on to develop Short Bowel Syndrome (SBS). Eight years ago, following her fifth surgery, SBS and the need for intravenous nutrition (TPN) became a reality.

In recognition of Crohn’s and Colitis Awareness Week (1-7 December 2023), Lori generously shares some of her experiences, and the advice she’d give to anyone grappling with complexities of inflammatory bowel disease (IBD) who may be facing the possibility of developing SBS as a result of surgical procedures to treat their disease.

Learning to live with Crohn’s and an ostomy

When I was diagnosed with Crohn’s disease at 16 years old, the thought of having to have “a bag” was, quite frankly, terrifying. But at the age of 24, the disease overtook my entire being. I had debilitating pain, cramps, bloody diarrhea and urgency, and I was up multiple times a night – I often couldn’t leave my house for fear of an accident. I was too sick to eat and had no energy.

Eventually I needed an emergency proctocolectomy. My colon, rectum, and terminal ileum were removed, and replaced with a permanent ileostomy. I had been so sick before surgery that I was very weak, and recovery was incredibly hard.

But what surprised me most? The feeling of relief. I was free! As I recovered from the procedure, my pain and symptoms were gone. Suddenly, I could eat what I wanted, and I started feeling back to myself. My quality of life improved and my stoma became my new best friend.

Though I was grateful for this new lease on life, it came with challenges. The Crohn’s disease returned a year later in my small bowel, presenting as multiple strictures and obstructions. I was now navigating flares with an ostomy, often experiencing high output which required supplemental outpatient intravenous hydration, magnesium, and potassium to get my levels back to normal.

What is Short Bowel Syndrome?

Five more surgeries followed in the span of 32 years, with the intention of saving as much bowel as possible. I heard mumbles of avoiding “short gut”, but nobody sat down and explained what that meant. I wish I’d known more about it sooner.

Short gut, also known as Short Bowel Syndrome (SBS), occurs when your bowel doesn’t have enough length to absorb the nutrition and hydration your body needs on its own. In most cases, it happens as a result of major surgical resection of the small intestine, necessitated by conditions like Crohn’s and colitis. For a patient like me, with only 69cm of intestine remaining, intravenous nutrition and hydration support is needed to keep my body functioning properly. This is known as Total Parenteral Nutrition (TPN).

Coming to terms with a new normal

TPN nourishes my body with the nutrients it’s not capable of absorbing on its own. It’s delivered via a Hickman catheter in the upper left part of my chest, infusing through a pump stored in a backpack while I sleep.

Coming to terms with that wasn’t easy for me. I’d been on TPN before surgery to increase my nutritional status, and I assumed I would be off it at some point during my recovery. But with the SBS diagnosis, that was unlikely to happen. I had a very hard time accepting the fact that I would have to live with a central line for the rest of my life.

Therapy has been invaluable in helping me learn how to cope and accept. I learned that I can dislike having to hook into my TPN each night, and at the same time, I can be grateful for it, and for the life it allows me to lead. These two truths can co-exist together – and that way of thinking has helped me to accept my new normal.

Goals

I’m also hopeful that I can reduce my reliance on TPN over time. For patients like me, the goal of SBS management is to increase valuable time off TPN through intestinal rehabilitation. This uses approaches including diet, medications, and surgery to help the remaining GI tract work better so that it can absorb more nutrients from eating. Not all SBS patients are the same, so it’s important to understand each individual’s needs and explore the best options.

It’s also crucial to have the support of a medical team that specializes in IBD and intestinal rehab. Since my SBS diagnosis, I was careful to choose a multidisciplinary team at an academic medical center that is part of the Gastroenterology Rehabilitation and Transplant Program. My physician is an IBD specialist and the director of the nutrition support program, and I’ve worked closely with a dietitian who specializes in treating patients with SBS. Their support has been life-changing.

Need to Know

Having spent over 40 years navigating the complex journey from Crohn’s to SBS, I am now an advocate for patients with inflammatory bowel disease. Here are some of the most important things I think patients should know when managing their own condition:

  • Preserving Bowel
    As a Crohn’s patient, it’s important to be aware of potential complications of surgery, and the possibility that losing large sections of small bowel can lead to SBS. Make sure to discuss this with your healthcare team before surgery, and wherever possible, look for ways of minimizing bowel loss.
  • Learn About SBS
    Being educated, and aware of the resources available to you, gives you the opportunity to have important discussions with your medical team and seek out the best possible care. You can access resources, support, and education through UOAA and other organizations such as the Oley Foundation, IFFGD, Transplant Unwrapped, The Crohn’s and Colitis Foundation, and The Short Bowel Syndrome Foundation
  • Find the Right Team
    Seek out a medical team with expertise in SBS and nutrition to offer you the right support throughout your journey. Ideally, this should be at a center that offers intestinal rehabilitation with a multidisciplinary team. If this isn’t possible, find out if your medical team is willing to consult with such a center.
  • Nutrition Matters
    Pay close attention to your diet. Some foods may lead to increased ostomy output or difficulties in digestion. Staying hydrated and making wise food choices are essential. Learn what works best for your specific condition and consult an ostomy nurse and an IBD/SBS dietitian for guidance.
  • Advocate for yourself
    Being comfortable advocating for yourself does not mean being confrontational. It’s about being heard, understood, and well cared for without feeling dismissed. Open communication with your healthcare team is important, especially when shared decision-making comes into play.
  • Resilience
    Day to day life with these diseases can be hard. Sometimes we have to take things day by day, hour by hour, and even minute by minute to get through the tough times. I believe that every patient is resilient. Sometimes, it’s buried, and we just need a bit of extra support to help it come to the surface.
  • Seek support
    Actively engage with your IBD community. Bowel diseases are very private and isolating, so being surrounded by others who understand firsthand what you are experiencing is very powerful. Family and friends can be supportive, but they can only empathize. Speaking with actual patients who have “been there, done that” is extremely helpful and comforting!
  • Be kind to yourself.
    Self-compassion and self-care are very important when living with the day-to-day challenges of these diseases. For example, fatigue is one of the biggest symptoms of IBD. Giving ourselves permission to rest can be hard for some of us – me included! That’s where self-care and self-compassion come in.
  • Be positive
    Lastly, it is absolutely and positively possible to live a very happy and productive life while living with conditions like Crohn’s disease and SBS.

 

[Article written by Lori Plung with support from UOAA digital sponsor, VectivBio.]

VectivBio is a global biotechnology company committed to improving the lives of people with short bowel syndrome, who rely on parenteral support (IV nutrition and/or IV hydration). VectivBio is part of Ironwood Pharmaceuticals Inc., a leading global gastrointestinal (GI) healthcare company on a mission to advance the treatment of GI diseases and redefine the standard of care for GI patients. To learn more, visit VectivBio.com.

AN OSTOMY ARMY STORY

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By Tony Plonner

Editor’s Note: UOAA is proud to recognize Veterans and supports all those now living with an ostomy or continent diversion. 

As a 20-year-old, way back in 1972, entering Army basic training was a daunting experience, the “fear of the unknown” had my mind reeling of what could happen. My approach was to take the challenge one day at a time, one hour at a time, or if necessary, one minute at a time.

We adopted many phrases to get us through the many challenges of this new environment: “Can Do!”, “When the going gets tough the tough get going” and when all else failed, “Yes Drill Sergeant!’ and we’d jump into the challenge at hand. This experience taught us we could surmount obstacles we’d never dreamed of.  Unknowingly, our training prepared us for many of life’s challenges both in and out of the military. For me, progressions to Military Police School and Officer Candidate School strengthened my confidence and allowed me to take on challenges in both the military and civilian worlds.

One basic premise I learned was to never quit.  I learned the quitter never knows how close they were to success. Whatever the challenge, you keep moving and keep fighting.

A little over thirty years ago, I was diagnosed with prostate cancer.  Surgery and radiation followed.  I kept a positive outlook and survived the experience.  Unfortunately, a couple of years ago, I was diagnosed with bladder cancer.  I was told there was a chance the radiation many years before may have led to this cancer.  As it was muscle invasive, and with a history of radiation, all the doctors involved agreed the bladder would have to go.  I had faith in my team and after a round of chemotherapy, I had urostomy surgery at the University of Miami Medical Center on March 14, 2022.

My best advice for those about to undergo or have recently had urostomy surgery for bladder cancer is to keep the “Can Do” attitude and continue with your life’s goals. You’ll be amazed how far you’ll go.

Having been told the result of the surgery would result in an ostomy, I researched as much as possible to learn about the side effects and the changes to my lifestyle I’d encounter. A pleasant result of this research was finding the tremendous support network available.  I learned about the Bladder Cancer Advocacy Network (BCAN) and through my old army buddy, Justin Blum, United Ostomy Associations of America (UOAA).

Tony Plonner, pictured riding the Florida Keys Scenic Highway has continued an active lifestyle after urostomy surgery for bladder cancer.

Reading case stories, with a bit of skepticism I’ll admit, I learned of the many people who have not only survived but thrived through this experience.  Along with my experience of tackling the unknown in the Army, and the great support of family and friends, these stories only bolstered my faith that we’d lick this cancer and continue with life.

My doctors regaled me with stories of ostomy patients maintaining their lifestyles, skydiving, running, golfing and barely missing a beat after surgery.  Combined with the experiences of ostomates I’d read about, was confident I’d go through the surgery and, despite new limitations expected on my lifestyle, I’d take the hill and keep on moving.

Looking back over the last year and a half I am astonished at how smooth, if that is the right word, the transition has been.  Beginning with the support of the team at the surgery center, who trained me in the care of my ostomy, I followed orders like a good soldier, paid attention to their instruction and thankfully have made the transition to ostomate.

My biggest concerns, changes to my lifestyle, were pretty much unfounded.  I am an avid golfer, road bicyclist, and generally an active person.  I was concerned about how my ostomy bag would affect these pursuits.  The answer is hardly. I wondered how I’d be able to go on bike rides of 15 or 20 miles in tight bike shorts and was pleasantly surprised to find it pretty comfortable. Also, it is easy to tell when I need to pull over and go to the bathroom.  Spandex bike shorts don’t provide much wiggle room!

Golfing also has been unaffected by my ostomy. I was worried about the twisting during the golf swing and any stress it would put on my appliance.  It hasn’t been an issue.  Now, if I could only lower my handicap…

My best advice for those about to undergo or have recently had urostomy surgery for bladder cancer is to keep the “Can Do” attitude and continue with your life’s goals. You’ll be amazed how far you’ll go.

Resilience Story: Chris Seyler

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Chris Seyler joined the Phoenix (Arizona) Ostomy Support Groups during COVID times and met up with the group at a park ostomy meeting. Recovering from long term illness and recent surgery, he was ready to find his way back to normal life.

Chris was born in the Phoenix area. While growing up his parents taught him to be active in a team sport, exercise and stay away from bad habits in life.  Chris played basketball and ran track, being nominated for all state in both sports. Receiving a basketball scholarship, and motivated by teachers and coaches, Chris majored in Kinesiology and Science from The Master’s University and became a teacher.

While in college Chris met his wife Colleen, also a teacher. Their son, Nathan, shares his parents’ passion for teaching and athletics and was selected to be in a Disney running movie, MacFarland, USA. Father-Son teamed up to coach school teams in Track and Basketball, winning state Championships.

Following his passion, and inspired by his son, Chris started competing in more events. From 2003 to 2017 he competed in 5ks, 10ks, half and full marathons, triathlons, Ironman, and obstacle racing. It was after AZ IRONMAN 2013 that Chris was diagnosed with ulcerative colitis and started losing weight in 2017.  The next couple of years were tough; in and out of the hospitals for nutrition and dehydration and battling a bacterium in his colon.  Various medications and infusions did not help with easing the illness and emergency surgery was performed in 2019.

Weak from illness and surgery Chris retired from his full-time teaching job and put his running shoes aside.

As time went on and recovery was underway, Chris set a goal to run a 5k. Not able to keep up with his wife, she encouraged him to walk, jog, and run. Hydration was always important as part of Chris’ races, but not having a colon taught him he had to be even more diligent about it.  During Run for Resilience Ostomy 5k 2021, Colleen ran the race. Chris walked and rested with his dog…but he finished…and his passion was returning! While training he worked on improving balance and strength and was able to jog/run at the Arizona Run for Resilience Ostomy 5k in 2022. Chris will be participating this year on the Arizona Virtual Race Team as part of the 2023 Run for Resilience Virtual Ostomy 5k on October 7th.

Passionate about life after ostomy surgery; Chris is teaching part-time, is the Phoenix Ostomy Group Secretary and the Meeting Leader at HH Cowden Center ostomy meetings.

To learn more or sign-up for the Run for Resilience Ostomy 5k visit ostomy.org/5k. You can donate to UOAA fundraisers by Chris and other resilient participants here. 

Resilience Story: Maria Sandoval

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Hi, my name is Maria Sandoval. I wanted to come on here and share my story with you. You may ask, why am I putting the Run for Resilience Ostomy 5k run/walk/roll together in my community? Because it has given me my life back.

In November of 2022 I had surgery to get an ostomy because my ulcerative colitis was getting worse. I was diagnosed with ulcerative colitis in 2012. Ulcerative colitis is an inflammatory bowel disease (IBD) that causes inflammation and ulcers (sores) in your digestive tract. Ulcerative Colitis affects the innermost lining of your large intestine, also called the colon, and rectum. In most people, symptoms usually develop over time, rather than suddenly.

In my case my symptoms did develop over time and things got worse in 2020. The medication I was put on was no longer working. My body was shutting down and therefore my doctor recommended colorectal surgery.

It’s important to me to shine light on ostomies and to give hope to my ostomy community in Arkansas and show them that they are not alone.

Me during a Remicade infusion for ulcerative colitis before making the choice to have ostomy surgery.

I had no idea what this surgery was nor did I know anyone that had undergone this type of surgery. The fear of the unknown put me off from having this done. I was fortunate to have a great surgeon with a great team who gave me all the information I could ask for. They were patient with me, and so understanding of all my feelings. They answered my questions and addressed my concerns. Having that information and having faith, helped me make the decision to have this surgery. I had hope for the first time since being diagnosed with ulcerative colitis.

Currently, it’s 2023 and I am 33 and I have my life back. For the first time in a decade I can honestly say I feel safe in my body. I have energy, I feel empowered and I’m here to share my story. Making the decision to have my colon removed and have an ostomy was the best thing I could have done for myself.

I am here to stop the stigma around having an Ostomy. I am here to highlight the positives of having one and how it has impacted my life.

I learned about UOAA through social media. I went to ostomy.org to look up what UOAA is all about and saw that they had a 5k run for Ostomy Awareness Day every October. I have always loved to run in races and thought how cool it would be if I could bring this run to my area. I contacted UOAA to see if they would like to have Northwest Arkansas be part of their Run for Resilience Ostomy 5k and they were more than happy to do so.

I was so proud to have finished the race. I wasn’t racing for time, rather, I was racing for me. My ostomy gave me back my confidence in running.

Me 19 days after my Ostomy Surgery.

The Run for Resilience Ostomy 5k is the major fundraiser for all the great things UOAA does. UOAA has great resources to help with recovery and one of those resources I happened to stumble upon is their support group finder. UOAA does a great job of locating support groups and WOC nurses in your area. Forever grateful for that! I also use their site for educational information, self-advocacy checklists, and finding events they have going on, like the Run for the Resilience Ostomy 5k and their National Conference.

By hosting and taking part in the Run for Resilience I hope to spread awareness on ostomies and continent diversion surgery. It’s important to me to shine light on ostomies and to give hope to my ostomy community in Arkansas and show them that they are not alone. That they have a community to go to.

My mother is helping me host our first event. I am so grateful to have my family help me through this journey. My husband and mother were my caregivers before and after surgery. Making the decision to have surgery was a difficult one, but they both helped me through it.

I hope everyone no matter of where they are out takes part in a Run for Resilience event near them or the Worldwide Virtual Ostomy 5k. I love sharing photos like the one here of a half-marathon I ran five months post-op! Everyone should go at their own pace and talk to their doctor, but for me I think it was one month after my ostomy surgery when I started to train for the half marathon. I took it pretty slow. I began by walking a mile and slowly worked my way up to a jog. By month four I was feeling great and feeling like my old self. I was so proud to have finished the race. I wasn’t racing for time, rather, I was racing for me. My ostomy gave me back my confidence in running.

I would run races here and there before my ostomy surgery. My ulcerative colitis would make it difficult at times to run, but when it was in remission I was happy to get back to running. I have always enjoyed running because it was the one thing I could control in my life. My ostomy gave that back to me. Ostomies are truly life savers!

To sign-up or donate to a Run for Resilience Ostomy 5k event near you visit ostomy.org/5k. Support or learn more about Maria’s event, the Rogers, Arkansas Ostomy 5k and follow her 5k on Instagram.

Celia’s Story: Feeling at Home with Short Bowel Syndrome

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Since short bowel syndrome is not something most people talk about every day, I am excited that we have a month to bring awareness to it. As someone living with short bowel syndrome (SBS) and an ostomy, I have learned to be grateful for the technologies and doctors who have helped keep me alive through my surgeries and infections. And I am proud of myself for developing the self-reliance to find ways to make my life easier.

To learn more about SBS, visit https://sbs-whattoknow.com/. To join the community and talk with others who are living with SBS, check out https://www.facebook.com/TakedaSBS/.

People with ostomies come from all stages of life, and we all have different stories to tell. But we also share some common experiences—and we can learn from each other. I have an ostomy because of SBS, a rare digestive disorder that many people may not know much about. If you asked me about my memories of my SBS diagnosis, I couldn’t answer that because I don’t remember it. My SBS diagnosis happened right after I was born. Fortunately, my doctors quickly ran tests and diagnosed me with Hirschsprung’s disease, a condition at birth where certain nerves are missing from parts of the intestine. I immediately had surgery to remove my colon and half of my small intestine, which led to my SBS diagnosis and having an ostomy.

My parents, who were graduate students at the time, were as ready as they could be to bring home a baby, but I think they had prepared for the predictable, everyday challenges of having a “normal” baby, not for me. After my surgery, I spent about one month in the NICU, where the nurses instructed my parents on how to care for me.

When my parents brought me home, they raised me to never feel different and didn’t see my condition as something to hold me back; they wanted me to be independent, which I am! My health condition has been just a part of who I am. I grew up getting hooked up to IV nutrition, a form of parenteral support or PS, every night. It was such a part of my routine that I didn’t know any different. SBS was just part of my life.

From a very early age, I learned how to take care of myself because that’s what parents teach their children. If I hadn’t had SBS, they would have potty-trained me. Instead, they taught me how to drain my ostomy. Their attitude was, This is going to be difficult, but she has to do this. So, we would work on the steps together. Just like other kids learning to make it to the toilet, I learned how to change my ostomy so that I would be ready for school.

Starting preschool was an adventure. How many schools are equipped to care for a kid with an ostomy? Wildly enough, the director of the preschool was an older woman who had friends with ostomies, so she was familiar with my needs! It’s a great example that, despite age differences, we can connect through our ostomy knowledge and help each other out. Eventually, the preschool teachers and director trained the staff at my elementary school when it was time for me to start my education.

As I was growing up, all my friends knew that I had a health condition. I also think I was lucky in that, while I was technically very sick in the beginning, the doctors were able to address it early on. That meant that even though I had a rare digestive disorder, I was actually not a very sick child. Plus, I just didn’t have that concept of shame. For show-and-tell, I’d pull up my shirt to show everyone my line for my parenteral nutrition. And they’d all be like, “Cool! There’s some weird plastic thing hanging out! Moving on…” No one cared.

Then, when I was in middle school, we moved from California to the East Coast. For the first time ever, I had to share my condition with others—in a student population hundreds of times larger than the tiny magnet school I’d left behind. Plus, my health condition started flaring up for the first time. I missed the first day of school due to my first-ever line infection. At that point, I hadn’t really processed what my medical condition meant for my life.

So, I was dealing with complex new health issues while trying to pretend I was “normal.” I got through middle and high school through sheer determination. While I enjoyed my time at school, I often felt like an outsider—like I couldn’t tell people about my true self. I shrank into myself and let fear cause me to lose who I really was. I realized, for example, that the type of shirt “everyone was wearing” would show my line. If I wore the “in” jeans, which were low-waisted, my ostomy bag popped out. I was already not like everybody else just by my clothes alone. Add in missing a lot of school due to hospitalizations and infections, and people would recognize me as “the girl that’s gone all the time.” I let go of hobbies, friends, talents, and dreams just to blend in.

These days, more than two decades after my SBS diagnosis, I don’t worry about blending in so much. Instead, I am clear about my needs, and I’ve figured out what works for me. It doesn’t matter if my jeans are on trend—feeling good and confident in my own skin and my own life matters most. From my clothing choices to creating an ostomy station in my bathroom that’s both functional and cozy, I have learned to set up the things I need to feel comfortable and happy. This also means that when something is stressful or hard, like if the bag breaks in the middle of the night, I already have a bag ready on my nightstand so that I can deal with the issue. I try to think through what might happen when I am clear-eyed and calm so that when difficulties arise (which, in my experience, they have), I can focus on fixing the problem.

I’ve been managing my ostomy on my own since high school, and even when I’m in the hospital or being visited by nurses at home, I take charge of changing my bag. Sometimes the nurses are curious to see how a patient does it independently. I think that as they watch me, they pick up tips and strategies to show their patients different—but still medically acceptable—ways of managing their bags at home. We (or our caregivers) learn the correct procedures in the hospital, and we all find ways to adapt to SBS.

Thankfully, hospitals and homes are two separate things. So when I bring my SBS home with me, I try to be a good host and make it cozy and comfortable.

In recognition of Short Bowel Syndrome Awareness Month, I would like to encourage my fellow SBS patients and their caregivers to stand up and become their own best advocates. As I said, people with ostomies come from all stages of life, and while every patient is unique, we are all in this together.

This article was created by Takeda.

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.