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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.

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.

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.