Tag Archive for: rare disease

Maintaining Nutrition and Hydration in the Management of Short Bowel Syndrome

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Part 1 of a Two-Part Series featuring Emily Rubin MPH, RD, LDN, Thomas Jefferson University Hospital

With over two decades of experience at the Thomas Jefferson University Hospital Division of Gastroenterology and Hepatology in Philadelphia, I am the Director of Clinical Nutrition and Lead Clinical Dietitian for the Division of Gastroenterology and Hepatology. In this role, and over the course of my career, I have provided comprehensive nutrition education and medical management to patients of all ages living with a wide range of gastrointestinal diseases, including short bowel syndrome (SBS).

SBS is a serious and chronic malabsorption disorder that occurs when parts of the intestine are removed surgically or due to injury. The remaining intestine may not be able to absorb enough nutrients from food and drink. When this happens, people with SBS may be at increased risk of malnutrition, dehydration, electrolyte disturbances and/or diarrhea (increased output). I am passionate about educating patients and their family care partners about the roles of nutrition and hydration in the management of gastrointestinal diseases like SBS, and proud to share my clinical experience.

To learn more about SBS, click here. To join the community and talk to others who are living with SBS, check out https://www.facebook.com/TakedaSBS/.

The Nutritionist’s/Dietitian’s Role in Multidisciplinary SBS Care

Managing SBS can be complex, but working with experienced health care providers to establish a set of management goals that are individualized to the distinct needs of the patient can be an important part of self-advocacy. Since nutrition and hydration goals are important parts of an SBS management plan, a nutritionist or dietitian will often be included in an SBS patient’s multidisciplinary health care team.

 

Here at the Thomas Jefferson University Hospital Division of Gastroenterology and Hepatology, we see patients for a variety of reasons. In this two-part series, I am going to share my own clinical experience on two topics that come up frequently with our patients who are living with SBS and ostomies (e.g., ileostomies or jejunostomies). This article will address “Output Consistency” – including thickening or thinning out stools, as well as managing stool acidity. The second article in this series will focus on “Hydration” – including common causes of dehydration in people with SBS, as well as rehydration tips, including Oral Rehydration Solutions (ORS). That article will post in the coming months.

Managing Output Consistency

I see a 35-year-old female patient with a history of Crohn’s disease who underwent her third intestinal resection, resulting in short bowel syndrome (SBS) and an ileostomy. Since the surgery, she has struggled with managing high stoma output and persistent diarrhea and weight loss of 10 pounds over the past four months. She states, “Every time I eat too much fat, it makes my diarrhea worse, but I need to gain weight, so I am not sure what to eat?”

Considerations:

  • Weight Loss: Patient requires a diet that promotes weight gain without increasing stool output.
  • Dietary Concerns: She noticed that consuming high-fat foods exacerbates her diarrhea and stoma output; she needs to gain weight but is uncertain about what foods to eat that won’t worsen her symptoms.
  • Fluid and Electrolyte Management: Maintaining hydration and electrolyte balance is crucial to prevent dehydration due to her high-output stoma.

I stress to my patients that diet therapy is key for getting proper nutrition and for managing symptoms like diarrhea, which is often the biggest challenge for my SBS patients. I typically start with these important diet factors for SBS output consistency: I educate my patients about how to include Fat, Carbohydrates/ Sugar, and Fiber in their diets.

FAT

Did you know that eating too much fat, including fried or creamed based foods, can make diarrhea and output worse and cause nutrient and fluid loss?

Fat provides important calories but is a hard nutrient to digest. Limiting fat intake is most important in my SBS patients who have a remaining colon, severe steatorrhea (poorly digesting and absorbing fats) and/or a history of kidney oxalate stones. In some cases, I advise them to limit their fat to less than 30% of their daily calories and spread fat intake evenly throughout the day to help their bodies digest it better. When it comes to preparing foods such as fried or creamy based foods, I tell them to incorporate small amounts of easily digestible fats such as medium-chain triglycerides (MCTs) found in coconut oil. I have seen that these are better absorbed in my SBS patients.

I also educate my patients about avoiding High Fat Foods, such as fatty meats like beef, lamb, pork, and skin-on chicken and poultry. Dairy foods like whole milk, soft cheese, ice cream, and butter contain lactose. Symptoms of lactose intolerance are often dose-dependent, and some of my SBS patients can tolerate some dairy products, especially if they are spread over the course of the day.

I recommend that my patients incorporate healthier fat choices, such as fatty fish: salmon, tuna, olive oil, avocado and nut butters.

CARBOHYDRATES / SUGAR

Did you know that drinking 100% fruit juice can increase stool output and dehydration?

When my patients eat concentrated sweets, including candy (e.g., jellybeans or gummy bears), cookies, cakes, and drink sweetened beverages (e.g., soda, juice, lemonade), they draw excess water into the bowel, increasing stool output and exacerbating dehydration. Instead, I tell them to choose complex carbohydrates, like white rice, potatoes, pasta, bread and bananas, to help manage stoma output and improve nutrient absorption. These carbohydrates are easier to digest and absorb compared to simple sugars. I have seen that reducing stool volume and minimizing fluid loss can help my SBS patients maintain better hydration and nutrient balance.

FIBER

Did you know that incorporating soluble fiber like psyllium husk and oatmeal in the diet may improve stool consistency?

Fiber is often a scary word for my SBS patients. Soluble fiber found in oats, barley, citrus fruits, carrots, sweet potatoes, ground flaxseed, and psyllium husk can help to slow gastric emptying, potentially improving diarrhea and stabilizing bowel movements. Fiber dissolves in water, forming a gel-like consistency, which helps slow digestion and manage diarrhea. I tell my patients to focus on soluble fiber to improve stool consistency, especially if a colon segment remains. I encourage a moderate intake of soluble fiber to be spread throughout the day to help my SBS patients manage stool output and enhance fluid retention.

Although insoluble fiber, found in whole wheat, brown rice, bran, cauliflower, broccoli and dark leafy greens, may help thicken stool consistency, it can lead to increased loss of minerals and fluids, exacerbating dehydration. I frequently advise my SBS patients to avoid it.

I often remind my patients that they should not prioritize fiber over meeting their basic nutrient needs, especially for patients with poor appetite or requiring weight gain.

 

Additional nutrition tips I often share with my SBS patients, include:

Small, Frequent Meals: Eating smaller meals throughout the day can help manage symptoms and improve nutrient absorption.

Avoidance of Certain Foods with A Dietitian: Some foods might exacerbate symptoms, so identifying and avoiding these can be beneficial. A dietitian can help identify nutrient dense foods to include in an SBS diet to best manage symptoms based on the length of the patient’s remaining bowel, to help maintain hydration and to create a personalized nutrition plan.

Consistent Communication with Health Care Providers: I can’t stress to my patients often enough that they should always inform their doctor or dietitian about any changes to their diet or hydration plan. The patient’s health care team can adjust the patient’s treatment plan as needed to ensure they’re getting the right balance of nutrients and fluids.

Although there is no “one-size-fits-all” diet for SBS, your own health care team will work with you to develop nutrition and hydration goals that are specific to your needs. Diet therapy focuses on controlled fluid intake, nutrient absorption, and maintaining electrolyte balance to manage high-output stomas effectively. Again, it is important to tell your doctor and dietitian about any significant changes to your diet and output and identify signs of dehydration. A key aspect of nutrition and hydration management in SBS is educating patients on balancing nutrients, fluids and electrolytes.

To learn more about managing your SBS, visit https://shortbowelsyndrome.com/sbs-management.

Watch for Part 2 of this two-part series “Maintaining Nutrition and Hydration in the Management of Short Bowel Syndrome (SBS)” in the coming months!

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Emily Rubin MPH, RD, LDN is the Director of Clinical Dietetics, Clinical Dietitian for Division of Gastroenterology and Hepatology at Thomas Jefferson University Hospital in Philadelphia. In addition to her extensive clinical work, her expertise and insights in the areas of diet and nutrition have been featured in numerous online and broadcast media outlets.

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.

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

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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.

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.

Jessica’s Ostomy Story: Making an Invisible Illness Visible

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Words and Photos by Jessica Miles

Living with a permanent ostomy can bring on significant changes in one’s personal, social and professional life. My biggest fear around having my ostomy surgery was leakage, particularly in public, skin breakdown and altered body image. There was a lot of trial and error in the beginning, but I have found what works for me as well as the confidence to share about it. I have always been an empath and very compassionate, however, I have now found a new passion for helping others (through my surgeon and on social media) learn how to manage their ostomy as well as how to cope with their new life. If you are willing and able to adapt, you can do anything!

In 2016, after years of unexplained symptoms, countless procedures, hospitalizations, tests, and a couple of misdiagnoses, it was confirmed that I had a genetic connective tissue disorder caused by a defect in the protein collagen. I was diagnosed with Classical type Ehlers-Danlos Syndrome. More than 90% of people with Classical EDS have mutations in the COL5A1 or COL5A2 gene. I have a mutation of the COL5A2 gene. The condition is inherited in an autosomal dominant manner. Treatment and management is focused on preventing serious complications and relieving symptoms.

Classical EDS is associated with skin hyperextensibility, joint laxity, fragile blood vessels, joint hypermobility, migraines, joint and muscle pain. Some individuals with this subtype have a deformity of heart valves and may experience a dilatation of the aorta. In cEDS there is also an increased risk for aortic dissection. cEDS patients are prone to hernias and organ prolapse, as well as comorbidities such as autonomic dysfunction…which regulates heart rate, blood pressure, temperature, pupillary response and digestion.

I ended up having multiple surgeries over the past four and a half years due to intestinal dysmotility, prolapses and hernias, resulting in a port and a permanent ostomy. I now, have an ascending end colostomy. While I prepared for years for the possibility of having one, I realized nothing truly prepares you for the actuality of living with a bag on your belly for the rest of your life. Though little by little, the stigma took a back seat to the reality that life with an ostomy can be just as good, if not better for some, than life without one. I suffered constantly from abdominal pain, nausea, vomiting, bloating, constipation, bowel obstructions and malabsorption. While I still struggle with many debilitating symptoms of my disorder, I am now able to eat, gain weight and go to the bathroom regularly. Something I always took for granted until I was no longer able to do so.

My symptoms aren’t usually visible to the untrained eye, but they are life-altering for me.

Though I have a constant physical reminder of my condition in the ostomy, to the rest of the world, mine is a largely invisible illness.

It’s hard to describe how I feel to someone who has no idea what daily life with a chronic illness is like. I feel awful on the inside but look perfectly fine on the outside. Putting on a brave face for all to see has become a habit. My symptoms aren’t usually visible to the untrained eye, but they are life-altering for me.

I’ve learned to take everything step by step and day by day. My goal is to break down the stigma of ostomies, and while it’s not always easy, to show that one can still thrive and live a happy life with chronic illness. Due to pain and fatigue, I’ve learned to budget my energy, and while I may function normally one day, I usually need to rest the next. It’s all about finding balance. I am blessed to have an amazing support system in my husband and two boys, the rest of my family and friends.

For me, photography has been a powerful way to document my health journey and what I experience every day. It helps me see my progress, as well as setbacks in a cathartic way.

I am a registered nurse nationally certified in inpatient obstetrics. Unfortunately due to my illness, continuous surgeries and hospitalizations, I made the most difficult decision of my life and gave up the profession I worked so hard for and one that was a huge part of my identity. I am also an award-winning, internationally published photographer, focusing primarily on birth photography and self-portraiture. I found a new purpose, capturing laboring women and their deliveries combined both of my passions: childbirth and photography.

As a photographer, I believe that art enhances the well-being of individuals, society, and our environment and that artists have the power to heal, inspire, provoke, challenge, and offer hope. For me, photography has been a powerful way to document my health journey and what I experience every day. It helps me see my progress, as well as setbacks in a cathartic way. Photography allows people to see different perspectives and can be used as a tool for personal healing and positive change for many while nurturing creativity and self-expression.

My favorite quote is by the artist, Frida Kahlo. “At the end of the day, we can endure much more than we think we can.” I have definitely found this to be true and learned I am much more resilient than I ever thought I was. My illness has caused me to know myself better, which keeps my work honest and true. In the process, you truly meet yourself, which makes for better, more authentic work.

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.