Tag Archive for: TPN

Show Your Short Bowel Syndrome Pride During SBS Awareness Month in August: Digital Sponsor, Takeda, Launches a New SBS GIPHY Page

, ,

Educating yourself and engaging with others can help you take ownership of your Short Bowel Syndrome (SBS) care. We hope the following resources will help you feel more informed, empowered and connected to others this SBS Awareness Month and throughout the year.

Share your Pride during SBS Awareness Month!

Takeda is excited to share that we recently launched an SBS-dedicated GIPHY channel. Visit www.giphy.com/SBSStrong to find SBS-related stickers and GIFs. You can also search for them via your GIF keyboard wherever you use GIFs – for example, on Instagram, Facebook, WhatsApp, SMS, TikTok, X (Twitter), and more. Here are a few examples from our GIPHY Channel:

Continue reading for informational and support resources for the SBS community. Get started here and learn more about SBS.

Finding an SBS Specialist and Knowing What Questions to Ask

Short bowel syndrome is a serious and chronic malabsorption disorder that occurs when parts of the intestine are removed surgically and the remaining intestine may not be able to absorb enough nutrients from food and drink. Certain new symptoms that arise after intestinal surgery may mean it is time to connect with an SBS specialist.

Because SBS is rare, it can be difficult to find a healthcare provider (HCP) who has experience managing and treating SBS. We developed the HCP Locator Tool to help identify HCPs in local areas around the United States who have knowledge and experience in managing this rare condition. If you haven’t yet connected with an SBS provider, you can check this link to see if there is a medical provider with SBS experience in your local area.

Not all people who have parts of their intestine surgically removed will be diagnosed with SBS. Knowing what symptoms to look for after intestinal surgery may help reduce the time to an SBS diagnosis. Click here for a list of SBS symptoms that may arise after surgery.

Once you have identified a healthcare provider with SBS experience, it can also be challenging to know what questions to ask. Take our Gut Check Questionnaire to help prepare to speak with your doctor.

Establishing SBS Management Goals, Including Maintaining Essential Nutrition and Hydration

Managing short bowel syndrome can be complex, but working with your healthcare team to establish a set of management goals that are individualized to your distinct needs can be an important part of self-advocacy. Some goals might include:

  • Improving intestinal adaptation following resection surgery
  • Weaning off of the parenteral support that some people with SBS require after surgery in order to meet their nutritional needs
  • Making adjustments to daily tasks (e.g., using the bathroom, sleeping, etc.) in a way that can potentially improve day-to-day routines

You can learn about managing SBS here.

Although there is no “one-size-fits-all” SBS diet, your doctor will work with you to develop nutrition and hydration goals that are specific to your needs. This downloadable PDF illustrates how each section of the intestinal tract is responsible for specific functions that help absorb nutrients and fluids to promote digestion.

Staying adequately hydrated is critical for people with SBS. Read important information about the signs of dehydration and tips about staying hydrated in this digital booklet featuring Oral Rehydration Solution (ORS) recipes.

Connecting with Others

Living with a rare and serious digestive disorder like SBS can be isolating. As part of our continued commitment to the SBS community, we are always looking for ways to help people living with this condition to connect with one another. We are proud to provide people with SBS who are reliant on parenteral support the opportunity to connect with an SBS Mentor through our SBS Connect program. SBS Mentors are available to share their own experiences with the condition and its treatment.

There are a number of online and live communities where you can connect with others living with SBS. For example, you can find our SBS-specific Facebook community at https://www.facebook.com/TakedaSBS/.

And, again, you can now include SBS-specific stickers and animated GIFs in your online conversations. Bookmark www.giphy.com/SBSStrong and watch for new content in the months to come.

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.

Osmani Gonzalez’s Story

, , , , , ,

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.”

Having the Guts to Get a Black Belt

, , , ,

Cassandra Kottman’s Story

 

Kottman earning her 2nd degree blackbelt after a recent all-day test.

I started Shaolin Kempo Karate back in 2012. I had trained in Shotokan Karate in high school and really wanted to get back into martial arts. I’ve struggled with ulcerative colitis since I was 12 and staying active always seemed to help. My UC was still severe and I was in and out of the hospital quite often, so training was still a struggle. Eventually, my colon ruptured in 2016, and I was rushed to the ER and had to have an emergency colectomy. I was in pretty bad shape, and almost didn’t make it, even after the procedure. I was bedridden for about 9-months and on TPN for almost half of that dealing with the symptoms of pancreatitis.

I slowly got back on my feet. The whole time nurses were telling me that I wasn’t going to be able to live a normal life, and that I couldn’t do martial arts or many other kinds of activities. It was a very depressing time. Fortunately, I thought to ask my surgeon what kind of limitations I was going to have. She was so positive and let me know of another one of her patients who was a professional water skier, and the precautions he took to get back into his sport. That same day I went and ordered an ostomy guard, foam to make a belly pad, and texted my karate instructor to let him know I was coming back in.

My first class was absolutely horrible. All my muscles had atrophied. I did 3 stationary “jumping jacks.” Basically, I lifted my arms over my head three times and that was all I could manage. I almost passed out and ended up laying on the floor watching everyone else for the rest of class. I kept going back and pushed myself a little more every week. It took a good year and a half to get back to “normal.”

Because of the trauma I had gone through and my passion to continue training, I was inducted into the U.S. Martial Arts Hall of Fame as 2017’s Woman of the Year. Happy to say I am the first ostomate to ever be inducted. It’s a little weird to say, but I actually inspired myself, knowing everything I had gone through, and that I pushed myself to be my best. So, I continued to push my training to where I was able to train 3-4 hours 5 times a week. In 2018, I was invited to perform for the Abbot and test for my black belt at the Shaolin Temple in Dengfeng, China, which was a tremendous honor.

So, on November 6th, I took the test. Six intense hours of high-intensity drills, sparring and defense maneuvers against fists, knives, and clubs. I could barely move the next day, but it was all worth it because I passed. It really is a good feeling, and I’ve impressed myself with how hard I can push myself.

I still deal with day-to-day issues like hydration, or general fatigue, but overall, everything is manageable. If I have learned anything it’s that you need to listen to your body, and if there is something you really want to do, you can find a way to make it happen. It might not be the way everyone else is doing it, but all that matters is that it works for you.

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

, , , , ,

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

, , ,

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

,

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

, , ,

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.