Tag Archive for: Short Bowel Syndrome

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.

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.

Bethany’s Story: An Architect Learns to Engineer Life with Short Bowel Syndrome

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My journey to a Short Bowel Syndrome (SBS) diagnosis followed years of motility issues, intestinal complications and numerous surgeries, including a jejunostomy, which is an ostomy that creates an opening in the part of the small intestine called the jejunum. As a trained architect, I believe there’s no problem too big to solve, and applying that mindset has helped me to navigate the challenges of SBS and life with an ostomy. This is my story.

When I was diagnosed with a motility disorder at the age of 15, I never thought that it would have such an effect in my life. I was able to function with physical activity and limited diet until I had my colon removed in 2015 due to colonic volvulus. In my case, this meant that my colon twisted around itself, causing tissue death from lack of blood flow. The procedure worsened my underlying motility disorder of the small intestine. As a result of my underlying condition of chronic intestinal pseudo obstruction (CIPO), my intestines wouldn’t function. I lost the ability to absorb nutrients through my small intestine. I was in desperate need of answers.

Ultimately, I was evaluated for an intestinal transplant. At the time, my small intestine was severely compromised due to small intestinal bacterial overgrowth. In order to improve my odds of surviving the transplant, I underwent surgery to remove the majority of my small intestine in 2018, leaving me with only four inches of small intestine that didn’t function properly. The surgery, and the resulting serious and chronic malabsorption disorder that accompanied it, resulted in my diagnosis of short bowel syndrome, SBS.

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/.

Learn More

 

While not everyone will experience an SBS diagnosis the same way, for me, the removal of my colon and most of my small intestine eliminated the ongoing pain and discomfort I experienced when I was living with a motility disorder and chronic intestinal pseudo-obstruction syndrome. Just prior to the surgery to remove my small intestine, I weighed 87 pounds and couldn’t walk half a mile without becoming exhausted. I now weigh 122 pounds and was able to walk nine miles the other day. Keep in mind that this is just my experience and everyone’s journey will be different. In consultation with my medical team, I have decided to put my intestinal transplant on hold.

In my case, living with SBS also means that if I don’t eat the right things, it can affect my electrolytes and fluid balance. Without my colon, I don’t absorb fluids. So, I have found that if I drink water, I can actually lose fluids. A key part of managing my condition has been learning to listen to my own body and trying to understand what’s happening inside. For example, I have learned to recognize the signs of dehydration and have made it a priority to understand my lab values. As I have gained a better understanding of my condition, I also think it’s been important for me to find the right providers for what I’m going through at each stage of the process.

 

Navigating how to live with a jejunostomy was a challenging aspect in my SBS management, especially when I experienced leaking. I remember once going to a rare bookstore and my ostomy bag opened. In those moments, with liquid pouring down my legs, I had never felt more embarrassed. However, my grandma taught me that you have a choice in uncomfortable situations – you can either cry or laugh. I try to choose the latter. Not everyone will experience leaks with an ostomy, but if it happens to you, I’d encourage you to give yourself grace. Adapting to life with an ostomy can be a gradual process. For example, when I first had my jejunostomy, it took me an hour to change my bag and now it only takes me 15 minutes.

Despite the challenges, I never gave up on looking for answers and solutions. My training as an architect has led me to believe there is nothing that can’t be solved. After consulting with multiple ostomy teams and connecting with people who share similar experiences, I started to embrace the changes that came with my SBS diagnosis and jejunostomy.

I have been lucky enough to receive tremendous support throughout my SBS journey. My family is my biggest source of support. My husband has been there for me despite knowing about my chronic condition. My dad is the one who figured out how to empty the additional drainage bag overnight by flipping it upside down. My mother and grandma have created customized recipes to help with my oral food intake. But, for me, it’s been a continual process to educate the people around me about my condition. I have learned to be patient and vocal about my specific needs.

For anyone living with a rare and chronic illness, I encourage you to reach out and seek community support. A few members of the SBS community have inspired me and helped me to better understand my condition and encouraged me to break down barriers in my own SBS journey by sharing their own experiences. I’m grateful for the opportunity to connect with others going through similar experiences.

When I was first diagnosed with SBS, I did not think it would be possible to continue doing the things I love. Along the way, the architect in me has looked for opportunities to “design my future” with SBS by embracing challenges, educating myself and the people around me, and connecting with others in the community. I am proud of the progress I’ve made – I have a job that I love and I live in a city that I love. SBS is only a small piece of who I am, and it does not define who I am. I hope you can embrace YOUR journey with SBS, too.

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.

Matt’s Story: Living Life Intentionally with Short Bowel Syndrome

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At sixteen, I got my first job doing janitorial work at an amusement park. As you might imagine, I wasn’t thrilled by the work, which included cleaning the restrooms. I remember coming home and complaining to my mother that I wanted to quit. Although I didn’t realize it at the time, her response would soon take on important meaning for me and the way I would approach the rest of my life. She said, “No, honey, you can’t quit. Our family does NOT quit.”

Her message of perseverance was never more critical than following the moment that changed my life forever – a turning point that resulted in my diagnosis of short bowel syndrome (SBS), a serious and chronic malabsorption disorder. Since that moment, I have had to show up for myself every day and make the decision to never quit.

In October of 1999, during the summer between my sophomore and junior years of college, my family’s car was hit head on in a two-lane highway when someone crossed the center line and struck us. I was in the backseat with my then-girlfriend (who is now my wife) buckled in with a lap belt when we were struck. The seatbelt wrapped around my waist and caused me to lose blood flow to my intestines, which then had to be removed. I was left with no absorptive function and diagnosed with SBS. Though some people may arrive at an SBS diagnosis as a result of other gastrointestinal (GI) conditions, my introduction to SBS was abrupt. One day I was a college basketball player and homecoming king. The next I woke up in the ICU being told I would likely never eat or drink again.

The accident left my wife similarly injured — and also diagnosed with SBS — while my mom and stepdad also suffered injuries. Following the accident, our family church would bring food to the house to help out, only I couldn’t eat it. Seeing those casseroles had always been a sign of care, but in those early moments it was torturous. Getting the care I needed early on was a struggle – so much so that my grandma, an amazing supporter of mine, was one of the first people to step in and learn how to administer my total parenteral nutrition (TPN). I’ve been on TPN every night since then.

Due to my SBS diagnosis, for nearly two years, I also needed a jejunostomy, which is an opening created through the skin into the jejunum (part of the small intestines) that can be used for a feeding tube or as a bypass during bowel resection. The sudden need for an ostomy was difficult to accept at first, as I adjusted to my new life with SBS. As time went on and I finally became a bit more comfortable with my ostomy, I remember landing an interview for an internship I really wanted. However, I was so nervous during the interview that my sweat actually caused my ostomy to leak. Although I got the internship, which was a big step towards my personal goals, the experience was a learning curve in becoming confident in the balancing act I’ve had to develop over the years.

I was able to have the ostomy reversed before my college graduation and even graduated on time – a huge victory in the early stages of my SBS journey! But despite triumphing over those physical challenges, I had more hurdles to face, particularly in terms of my mental and emotional health.

For so long I had identified myself as a basketball player, an athlete, and in a single moment I was told that I would never play again. I cannot describe how devastating that was to hear. I wanted to fight, to call on the determination that had been a large part of my high school and college athletic career, but it was so hard to have that motivated mindset after being blindsided by a diagnosis of a rare disease.

Understandably, I was completely down in the mud for the first few months. I would lie in bed watching movies for hours because facing my reality was too heavy. After months of watching others live out their lives in those movies, I decided that I needed to stop avoiding the fight. I decided that, just as I had trained as an athlete, I now needed to train myself to live. I knew I had to focus on what I could control, lean into the discomfort and push through the obstacles to live life on purpose. Something I’ve come to call “living an intentional life.”

My decision to adopt an intentional mindset and train myself to live turned small steps into monumental milestones. The first thing I tasted after those initial months without any food at all was a red cherry Life Saver candy (ironic, right)? That was my small step. When I tried to make the leap to solid food, I admittedly pushed too far, too fast. Doctors told me that I could eat three bites of food, that was all. So, I bought myself a six-inch Subway sandwich, cut it into three pieces, and ate it in three bites! Regrettably, this wasn’t great for my digestive system at the time. But, it was a learning experience and it felt like progress to me.

To the disbelief of my doctors, and others around me, this shift in my mindset – my transition from victim to victor – translated to my physical health as I began to make steady progress. Nevertheless, I experienced challenges as I navigated how to best advocate for myself and balance my SBS management goals with my personal goals for living my best life.

It took a while to understand which types of care were best for me and the way I wanted to live my life. I am very thankful for my wife, who is a wonderful advocate, registered nurse and fighter. She is the one who was first able to step in and say, “No, this is not acceptable,” when working with my care team. It was hard at times to identify the right care solutions. For example, I initially had a Hickman (or central line), but the wires meant I couldn’t swim or shower. Both were too important to me to give up. Since I do not need to access my port for most of the day, I chose to have a high access port (chest level) that I can access each night instead of a central line that would interfere with my daily routine.

Adjusting to the new port was yet another obstacle, as I need to access it via needle. At first, I would get so nervous every night before that needle stick and I would just cry. But I am grateful I can trade that small amount of time each night for the ability to hold onto some important parts of my pre-SBS routine when I’m not hooked up throughout the day. For example, I remember how happy I was to take my first shower, something that I used to take for granted. I definitely used up all the hot water in our house that day!

These adjustments taught me to accept that I was not invincible and to instead focus on what I can control, taking small steps each day and forming habits to benefit me and my health. Though I have been on TPN every night since the accident, my TPN has evolved and is no longer my only source of nutrients. Now I take in ~30% of my nutrition from food and ~70% from TPN. I’ve also learned that sufficient levels of sodium and hydration are important, so now I salt everything and use lots of hydration tablets.

With my doctors’ support, I was able to start running again. In the beginning, I started with a few steps. Over time, I build up to just one mile each day. Then, I slowly built myself up to two miles, then three. Now, I have completed five half marathons! I continue to swim and play basketball, some of the things I worried I had lost forever because of my SBS diagnosis – I am so grateful they are still a part of my life.

I am also fortunate that my workplace includes a supportive team made up of healthy, go-getters who share similar mindsets to mine when it comes to living an intentional life. This work environment has encouraged me to meet my personal goals, including starting my own financial advising firm. Living with SBS can make the workday uncomfortable and unpredictable. But I establish boundaries and habits that set me up for success, such as the ability to avoid having meetings first thing in the morning or right after lunch when I might need to step away to manage gastrointestinal issues associated with my SBS. And my assistant is a great support in that area. Having those people in your life who have your back is everything.

Self-motivation is big for me, but connecting with others in the SBS community has been motivational in a different way. My wife and I went to advocacy group conferences early on, and I found it encouraging to hear from others with SBS. For example, a man who had been living for 55 years on TPN while continuing to thrive and take control of his journey inspired me to share my own story in hopes that others will see how it is possible to still live a great life with SBS.

I have experienced some very deep lows in my SBS journey, particularly in the beginning, but have learned to embrace the victories. I’ve even faced death, on one occasion in a very close call due to a staph infection near my port. It had brought my blood pressure down to 15/10 and forced the doctors to remove the port immediately. Yet, I’ve also seen the beauty of life – I have witnessed the first breaths of my children and so much more. I truly love life, and these experiences only further solidify my faith and perseverance.

This is a journey of ups and downs, but the downs don’t last. I believe we are not given more than any of us can handle, and I know that I can handle so much more than I ever thought I could. My faith, the blessings I have experienced in my life and the support of my care team, family and many others have brought me back to life. I would encourage anyone living with or caring for someone with SBS to be transparent about the challenges they may be facing and embrace them. Find opportunities within the obstacles and be intentional with your life.

To learn more about Short Bowel Syndrome (SBS), visit https://www.shortbowelsyndrome.com/. To join the community and talk with others who are living with SBS, check out https://www.facebook.com/TakedaSBS.

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.

 

Ashley and Mariah’s Story: A Young Daughter Inspires her Mom to Break Down Walls When Advocating for Short Bowel Syndrome Care

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Caring for a child with short bowel syndrome (SBS), a serious and chronic malabsorption disorder, can often feel isolating and disheartening.1, 2, 3 Unexpected barriers and challenges can make the condition difficult to manage and live with. And, because SBS is rare, finding information and support can be especially difficult. But for my daughter Mariah and me, this life with SBS is not about injustice, it’s about empowerment – a lesson Mariah has taught me better than anyone. As she puts it, “Mommy, I picked this life, and I picked you to be here to do it with me.”

Hearing those words years ago through the smile of my young daughter has been the ultimate source of strength for me. Mariah was born with most of her small bowel and half of her colon missing and was diagnosed with SBS at birth. She doesn’t receive nutrients as well as she should, which can lead to malnutrition, dehydration and other physiological complications. However, she was also born with incredible, innate resilience – that resilience has empowered me to break down walls and advocate fiercely on her behalf along our journey.

Finding strength has not always been easy. At the time of Mariah’s birth, the doctors said she would not live past one year. Essentially, I was told that my daughter had a death sentence. I did not accept that. But even though I didn’t doubt that she would survive her SBS diagnosis, I still grieved. Then, eventually I said to myself, “We will be the exception. We will be unique, and my child will thrive.” And, ultimately it was Mariah who created her own reality by not only surviving, but thriving. She simply shocked everyone.

Mariah is now ten years old, and she’s just like other kids in so many ways. For example, she certainly doesn’t like to clean her room! She is also her own wonderfully special person – she is a trickster who loves playing jokes on her brother and sister, and even kids around with nurses and staff during difficult hospital visits. She is equally nurturing and an avid caretaker of the sunflowers in our garden.

As Mariah gets older, I want to encourage her to become independent in every aspect of her life and to be curious about her SBS management. She already likes to gather her own supplies and has taken a particular interest in flushing out her own line (of her total parenteral nutrition [TPN]). Mariah doesn’t have the eating aversion that some kids with SBS might develop, so I allow her to eat whatever she wants and stock up her assigned “snack pantry” with what she chooses. Giving her the option to choose her own snacks is just one way that we’re building and supporting Mariah’s self-reliance in her SBS care and daily life.

This sense of independence helps Mariah feel like her true self because, as other parents of children with SBS likely know, the disease is not always pretty. That was especially true of Mariah’s experience following a surgical procedure known as an ileostomy. An ileostomy is a surgically created opening from the ileum, the lowest part of the small intestine. The intestine is brought through the abdominal wall to form a stoma. We agreed to do the ileostomy after she had been experiencing incredible pain when trying to use the bathroom. She would have acidic bowel moments and fissures – it was just awful.

The ileostomy was a temporary solution at best but was by no means perfect. We never had enough bags (or ileostomy pouches) and living with an ileostomy was challenging for us. At Mariah’s school, I would try to encourage curiosity and acceptance by telling the other kids that Mariah was an “alien from another planet” to explain her pouch. While a somewhat satisfactory explanation for most of the kids, she still experienced bullying from some of them. Thankfully, Mariah has always been confident in letting those bullies know that even if they weren’t being very nice, she would love them anyways. She punished them with kindness. It’s just another one of those things that makes her “Mariah”. Ultimately, Mariah was able to have the ileostomy reversed a few months ago which was a relief to us all.

In the moments of struggle that come with her SBS, Mariah has always responded with even greater moments of strength – sometimes even more strength than I possess myself. She has already had 40 surgeries in her first ten years of life, and on one occasion I decided to do her makeup with “winged” eyeliner before her procedure. However, when she came out of surgery, her makeup had been smeared. When she saw that I was crying, I told her the white lie that it was over the ruined eyeliner rather than let her see how hard it was watch her endure another challenge. Yet she was the one who said, with an unbothered smile, “Mom, stop! It’s not that serious, we’ll fix it later.” Her spirit is my strength, and that spirit inspires me to advocate fiercely for her every day.

In general, I feel there needs to be greater advocacy for the lives touched by SBS. It’s rare, and in my experience, there aren’t many people who can bridge the gap between parents’ understanding of the condition and the knowledge that medical professionals have. Although people living with SBS often have a circle of care that includes healthcare professionals across various disciplines, it can be difficult to merge everyone’s insights and get on the same page.

I have learned that to speak the same language as medical professionals, you must be invested and passionate about your research. For me, Google is my best friend. I research online to understand things like the vascular system and other biological processes. I read medical case studies online. I look at clinical studies. I constantly do my own fact-finding because I want to understand how a treatment will impact my child. The best way to do that is by arming myself with information as I fight to ensure she receives the care and treatment plans that are most appropriate for her. 

It can take time to find medical professionals who are comfortable when a parent says, “I respect your opinion, but I’ve done my research, as well, and we’re not going to do that; we’re going to do this instead.” I’ve learned that you can, in fact, get through brick walls. Although sometimes it’s by going over, around or under versus breaking through. And when medical professionals don’t think I’m at their level, I have no problem “putting on my heels” to get there so they hear me.

Although I am not a physician, I do have a PhD in Mariah – no one knows her better than I do. I know that when she has an infection, her eyes will turn bright green. When she’s going to have a fever, she sleep talks. I’m compelled to ask the deeper questions about why a doctor may believe a new treatment or procedure is necessary. This sometimes has forced us to switch providers because in my view, “protocols” are not personalized to Mariah’s needs. Every person with SBS has a unique experience.

We are ALL human, doctors included. And we can make mistakes, learn and grow. All the things that I didn’t know when Mariah was diagnosed with SBS have helped me remain teachable and earnest in advocating for her. I’ve learned so much more by recognizing what I don’t know. Being humble enough to take advice has given me the greatest defense.

Nevertheless, it is challenging to constantly find resources and support, especially as a single parent. Trying to make ends meet at home while managing Mariah’s SBS journey is an ongoing challenge. Even when reaching out to other parents in the SBS community, it can be difficult to find balance. But the biggest support I find is that I don’t feel alone. When I talk to other parents in the community about our experiences, they just get it. I don’t have to explain Mariah’s condition or worry I will feel crazy. I can just ask, “Do you experience this?” and they say, “Yes, we got you!”  Immediately, I feel less alone.

This journey takes strength and resilience, there is no doubt about it. Even with the support of the community and loved ones, ultimately, no one really knows what it takes for Mariah to be Mariah. They don’t know she has to carry a backpack for her nutrition. They don’t know what it looks like when I have to hold her for 15 minutes after her three daily shots. But they do see her strength, and they are compassionate towards the way Mariah knocks down every obstacle in her way, even those that would probably defeat others. I am humbled that this is our walk, and I believe it was given to us for a reason.

Just as the community encourages me and reminds me that I am not alone, I hope to encourage others in the community who may just be starting out on their SBS journey or struggling along the way. When talking to parents of newly diagnosed children, I want them to know that every child is unique, like a fingerprint. It’s all about believing that your child can do what they need to do. The most important thing is to know you’re doing the best for your child at every step of the way. This condition does not have to be a death sentence. And, if your child is anything like mine, he or she is likely stronger than you ever could have imagined.

To learn more about Short Bowel Syndrome (SBS), visit https://www.shortbowelsyndrome.com/. To join the community and talk with others who are living with SBS, check out https://www.facebook.com/TakedaSBS.

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.

 

Lynn’s Journey to self-reliance: Knowing what to expect can help empower people living with Short Bowel Syndrome

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My journey with Short Bowel Syndrome (SBS) spans 61 years, and it has been full of twists and turns. I’ve often wished that I understood from the beginning exactly what it meant to have SBS – it is not temporary, rather it is chronic. That means it’s a lifelong condition, and it has frequently caused me to make adjustments to maintain my independence and lead a productive and meaningful life. Reaching independence and self-reliance took years of learning the importance of self-advocacy to get the information I needed from my healthcare providers, no matter how difficult it may have been to hear that information. Each symptom, diagnosis, ostomy and medical procedure that preceded my eventual SBS diagnosis posed new challenges. The more I knew about what lay ahead for me, the more I could take charge of my own life. As August marks SBS Awareness Month, I hope my experiences will help inform and inspire others living with this serious and chronic malabsorption disorder to speak up and ask for information and tips to help maintain as much independence as possible.

A very long time ago, before cellphones, DVD players, home computers, microwaves and color TV, I was born in New Jersey in February 1959. I was a very “clean” baby, with no dirty diapers, which soon raised concern among the medical professionals who started me on enemas and laxatives. I ate very little and projectile vomited most of what I did eat. My mother continuously tried to find out what was wrong with me. Despite many doctors advising her that it was a discipline issue, no diagnosis made sense. None of their theories panned out. Nothing worked. And so began a long journey of wishing we had known what I was living with much earlier on.

In the summer of 1963, my mother, in her desperation, called the White House, spoke to the switchboard operator and requested the name of the Kennedy children’s pediatrician. She then made an appointment with the chief of pediatric surgery. The doctors conducted multiple tests, but unfortunately, I was discharged before the test results were back as the hospital was dealing with another emergency patient! Consequently, my mother did not receive the results, and we left wishing we had more answers.

It took three more years, another hospitalization and my first surgery for a doctor to request those records and discover I should have been diagnosed with a rare, congenital condition called Hirschsprung’s disease back in 1963. Back then, my family and I didn’t know that this diagnosis would increase the likelihood of future gastrointestinal procedures and diagnoses, including SBS. In fact, after that first surgery, my doctors told me I would be fine. Yet, I developed a fistula and the treatment/surgery for that left me with an ostomy. It closed within a year, and my parents were told yet again that I was fine, and we had learned all we needed to know.

Throughout my childhood, I continued to experience episodes of vomiting and few bowel movements, which left me very thin. To stop the vomiting, I had a laparoscopic procedure as a young adult, which I hoped would be the last of my surgeries – if only I had known what lay ahead. My surgeries did not stop there as I had hoped, and I had a second and third ostomy. In 2002, I was placed on total parenteral nutrition (TPN) for the first time. At that time, I was only receiving TPN during my stay in the hospital while recovering from surgery. My body had tried to cover up the symptoms of malabsorption for more than forty years, and I was now seeing the effects of my severe nutritional deficits. I would return to needing TPN periodically over the next two decades.

In graduate school, I met my husband, and we now share a wonderfully supportive family. When we wanted to start a family, there were some severe issues with my pregnancies. My firstborn was delivered via emergency caesarean because I couldn’t stop vomiting. I was hospitalized seven times during my second pregnancy. And then when I finally went into labor, my blood pressure dropped drastically throughout the delivery. I’m happy to say that despite their dramatic entrances, my daughters are happy, healthy and successful – both are biomedical engineers, and one is also a doctor.

In April 2006, I participated in a colonic motility study, and what I’d learned in pieces over the years was finally confirmed: my colon was functionally deficient. Six years later, I found myself unable to eat due to severe abdominal pains and a pseudo-obstruction and was put back on TPN. I feared this would prevent me from traveling on a three-week family trip to Australia, but my husband and daughters learned how to properly store, prepare and administer my TPN infusions, so we could still travel. I am so grateful to have been able to enjoy that trip with my family despite my TPN, ostomy and needing to use a catheter. I would encourage families and caregivers of people living with ostomies and/or SBS to take every opportunity to promote their self-care and independence as much as possible. For me, traveling with my family is important. Learning how to pack and plan our trips in ways that help me maintain my independence has made a big difference.

In August 2013, I was once again faced with just how much I didn’t know about my condition when I was officially diagnosed with SBS. My doctor explained that, rather than solely due to the length of my bowel, my SBS diagnosis was based on my clinical symptoms. My intestines could not sufficiently absorb the nutrients my body needed, leading to malnutrition and dehydration. To maintain nutrition, I continued on TPN.

After finally reaching 145 pounds in September 2019, I was told to discontinue TPN. With SBS, however, I do not know how long this reprieve will last, and these unknowns are important motivators for me to self-advocate when it comes to talking to my healthcare providers. As much as possible, I think healthcare providers should be upfront about the ramifications of living with SBS to fill the gaps in understanding disease management. For me, I spent a lot of time learning as I went along, and my hope is that by sharing my experiences, I can encourage others to ask the tough questions every step of the way.

I am thankful my husband and daughters have always been there for me, helping me emotionally at every doctor’s visit. My husband especially helps me get through each learning curve and the occasional late-night clean-up from messy ostomy accidents. I even have a service dog who carries my medicine for me wherever I go – I consider him my personal ambulance. Without this wonderful support around me, my life would be much more complicated.

That support has helped me take an active role in advocating for myself and others with ostomies, feeding tubes and other GI issues. Each condition differs in how they affect us physically, yet many of us share common concerns. Though people like me may appear healthy on the outside, I want to increase awareness that SBS can be a hidden illness requiring a lot of medical maintenance, sometimes including an ostomy and feeding apparatus. I want to support those like me who also may feel overlooked. Because of that, I started a support group that focuses on ways to continue living our lives, discussing everything from travel to preparing for emergencies. I also advocate on the national level, attending National Institutes of Health conferences in Washington, D.C. I would encourage patients and caregivers to attend local support groups as well as regional and national conferences to meet other people with SBS to share experiences and tips.

These opportunities to connect with the community of patients and caregivers managing GI conditions help to remind me I am not alone. Our individual journeys to SBS diagnosis may involve varied GI conditions and symptoms, and it can feel challenging to find others who share our experience. Sometimes our family and friends forget that we are not quite as physically strong or have stamina unless we mentally prepare ourselves for individual occasions. But in our shared SBS community, we can truly feel related to, supported and understood. I may not have had all the answers along the way, but with support and community I don’t have to dwell on what I wish I had known. I can simply live and learn through each moment.

To join the community and learn more about others living with Short Bowel Syndrome (SBS), visit https://www.facebook.com/TakedaSBS. You can also engage with #shortbowelsyndrome on social channels, especially during the month of August, which is SBS Awareness Month.

This article was created and sponsored 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.

Gwendolyn’s Journey with Short Bowel Syndrome

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Working with Takeda to Educate Others about Gastrointestinal Disorders

 

Ten years ago, I would have introduced myself as Gwen. Today, I am Gwendolyn, a version of me that’s been to hell and back with Short Bowel Syndrome, or SBS. A me who’s come to know a strength she had no idea she possessed. Gwen, before SBS, was career-driven, rushing through life. Everything for me was fast-paced—work, home, and family. But that was ten years ago, before SBS barged in and reshaped my entire life, stripping me of my identity. With August being SBS Awareness Month, I am sharing my story about living with SBS and an ostomy, as a way to drive awareness of this disease among others like me who are impacted.

I’m your typical New Yorker. What comes up, comes out. But not when it comes to SBS. It’s not the prettiest of conditions, is it? Intimate details aside, no one really understands what we’re going through. When I was diagnosed, I felt so isolated. To this day, I still have flashbacks of being in that hospital bed, wondering why. I wasn’t comfortable discussing what I was going through. No one deserves to feel alone with SBS. We are not hopeless. I don’t believe that. I’d like to believe that what I’ve been through is for a reason. Maybe sharing my story is my reason—to help people see that SBS can be a beginning, and not an end.

I entered the workforce shortly after completing high school. In 1991, I began working in construction. The minute I walked onto a job site, I felt at home. I started out as a temporary receptionist and after various projects, I worked my way up to office manager. I worked in construction for over 20 years. Come 2009, I was the administrative manager for the largest construction project in the country. I was happily married, living in the Atlanta suburbs, and enjoying any time I got to spend with my precious granddaughter. Life was good. I really felt like I had arrived. In fact, I was so focused on my job and being everything to everybody that I wasn’t giving the pain I’d been experiencing the attention it deserved.

By then, I’d undergone three separate abdominal surgeries: one to remove my appendix at age four, another to address a small bowel fistula at age 27, and finally a hysterectomy at age 40. For years, I’d been experiencing intense abdominal pain, which I’d alleviate with a pain reliever here and a pain reliever there. Until, one day, the pain relievers stopped doing the trick, and I’d just about had enough. I decided to finally seek medical attention. Turns out, I had quite a bit of scar tissue and adhesions leftover from my past surgeries. After talking it over with my doctors, I decided to go ahead with surgery to clean it up.

As far as I knew, the surgery was a success. I was released from the hospital on my 54th birthday. Two weeks later, my daughter came over and found me, incoherent, with a greenish fluid seeping through my surgical dressing; my temperature had spiked to 104 degrees. I was rushed to the hospital and immediately sent into surgery. I had developed a bad sepsis infection as a result of multiple fistulas found within my small bowels. I underwent two additional surgeries, which required the removal of portions of my small bowel, and was placed in a medical coma. While in the coma, my husband made the decision to have an air ambulance fly me to a larger facility where I was immediately rushed into surgery—again. This surgery would end up costing me additional portions of my small bowel and my colon as well.

I remember waking up days later and having no idea what had happened. So where am I? At a different facility, and in critical condition, so bad that they’d previously advised my daughter to say her goodbyes. My abdomen was completely opened and connected to wall suction. I also was left with an ileostomy. I’d have to now receive nutrition via total parenteral nutrition (TPN) twenty-four hours a day, seven days a week. At no point did anyone say a thing about SBS.

I was admitted in May of 2009. I ended up going home in April of 2010. My body couldn’t seem to hold off the ongoing infections. It seemed that everything that could possibly go wrong did. Let me tell you, I cried a lot. I couldn’t help but think, Why me? What had I done to deserve this?

My husband came to visit every day after work and stayed with me in the hospital on the weekends. One day he came in and I was having one of my uncontrollable crying spells. He lost his temper. He said to me, “What the hell are you doing? You are not doing anything to help yourself!” He spoke the truth; no sugarcoating it. I got angry. But you know what? I needed to get angry. I needed to feel something other than self-pity. I stayed angry for a long time after that day—not at him, not at the doctors, but at myself for not doing my due diligence. It was hard for me to admit that. As an administrator, I was used to surveying contracts, invoices, as well as familiarizing myself with the details. Yet when it came to my health and being my own advocate, I felt I had failed. But that didn’t mean I couldn’t start now. My husband helped me see that. He got me out of bed every single day to walk. He would wrap me up in blankets, place me in a wheelchair, and take me outside in the dead of winter in order for the sun to hit my face.

I managed to make it back to see my original gastroenterologist in April 2010 after I was discharged from the acute care facility, who for the first time diagnosed me with Short Bowel Syndrome (SBS), or what he called “short gut.” After my diagnosis with SBS, it took me a long time to come to terms with it; no one told me how different my life could be. I had no choice but to do a little soul searching, and it was there I met Gwendolyn. Gwendolyn wasn’t scared; she wanted some answers. Gwendolyn knew that, in terms of healthcare, there had to be more options out there.

After I was discharged, I returned to the hospital in May of 2010 in order to reverse the ileostomy and close the opening in my abdomen. I prayed that, afterwards, things would go back to normal. Boy, was I wrong. I had lost 75 percent of my small bowel and 25 percent of my colon.

I was tired of relying on TPN. By that point my doctor and I reduced the amount of time for my infusion requirements at home. There were nights I couldn’t bring myself to connect to TPN, and my husband had to do it. I got tired of wearing the backpack if I went out, and people asking, “Are you going camping?”

My infectious disease doctor recommended a gastroenterologist he thought would be a good fit. He was right. At my first appointment with her, she listened to my case and evaluated treatment options that would help me reach my treatment goals.

To help monitor my health and stay where I want to be medically, I keep a daily log, which includes voids, bowel movements, when I take my medication, daily activities, and what foods I’ve eaten. I even log my blood pressure and temperature. I see my gastroenterologist every two months. A log takes the burden of remembering off my shoulders, and all of my doctors seem to appreciate the effort. I have an amazing medical team. My gastroenterologist. My infectious disease doctor. My therapist. My nephrologist. And my primary care physician. But my surgeon, he was a gift. The last time I saw him was in April of 2017. I had been his patient for eight years. Before I left his office, he gave me some of the best advice to date; he said, “It’s time to go ahead and live your life.” I can hardly talk about that man without crying. He saved my life, in more ways than one.

The reality is, I have good days and bad days. On my good days, I spend that time making cupcakes for my granddaughter. I make a mean cupcake. I do laundry. I go out with friends. That’s right—I leave my house! I don’t go anywhere without my little toolkit. Inside my purse, I’ve got baby wipes, disinfectant spray, odor eliminator, rubber gloves, and hand sanitizer. But you know what? It works for me.

While I don’t miss some of the old Gwen, I do miss her tenacity. So I’m working on getting a little of the old me back—saying “yes” to opportunities and working on relationships with others.

When I was diagnosed with SBS, I wish that I had done more research to learn what the future could be like living with SBS. I think that would have saved me a lot of pain and heartache. So I’m going to tell you what I wish someone would have told me. If you’re not comfortable with where you are, do something to get where you want to be. If you feel like something is wrong, do something about it.

To learn more about Short Bowel Syndrome (SBS), please visit shortbowelsyndrome.com. You can also engage with #shortbowelsyndrome on social channels, especially during the month of August, which is SBS Awareness Month.

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.

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