Tag Archive for: dehydration

Maintaining Nutrition and Hydration in the Management of Short Bowel Syndrome

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

Earlier this year, I shared the first part of this two-part series on maintaining nutrition and hydration in people living with short bowel syndrome (SBS) and ostomies (e.g., ileostomies or jejunostomies). In Part I, I talked about managing “Output Consistency” – including thickening or thinning out stools, as well as managing stool acidity – with a focus on diet and nutrition. This article addresses hydration considerations, including signs and symptoms of dehydration in people with SBS and rehydration strategies.

Both articles reflect my own clinical experiences, including more than two decades at the Thomas Jefferson University Hospital in Philadelphia where I am the Director of Clinical Nutrition and Lead Clinical Dietitian for the Division of Gastroenterology and Hepatology. These articles are not intended as medical advice. Please contact your doctor if you are experiencing high output, symptoms of dehydration or any other health-related concerns.

As I mentioned in the first part of this series, 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 believe that patient education is critical and I am dedicated to teaching my SBS patients about what to expect in terms of stool/ostomy output, along with the risks and symptoms of dehydration. I am proud to share my clinical experience in this article.

Click here to learn more about SBS.

MANAGING HYDRATION AND RECOGNIZING THE SIGNS OF DEHYDRATION

A 60-year-old male patient with an ileostomy and approximately 80 cm of remaining small intestine was experiencing increased stoma output (about 2.5 L/day), resulting in frequent watery stools. He reported, “When I drink large amounts of water, I feel fatigued, dizzy, and I have muscle cramps!”

Contributing Factors:

  • Experiencing High-Output Stoma: During my consultation with the patient, I explained that excess fluid loss from his stoma led to depletion of electrolytes (sodium, potassium, magnesium), which can cause some of the symptoms that he reported.
  • Drinking Hypotonic Fluids: I shared with the patient that drinking hypotonic fluids, including plain water, can actually worsen dehydration by increasing ostomy outputs and making fluid and electrolyte disturbances worse. Hypotonic fluids are less concentrated than that of the fluids in the body. In addition to water, these types of fluids include plain, unsweetened tea, black coffee and sugar-free sodas.
  • Diet Low in Complex Carbohydrates: When the patient said that he consumes simple sugars and high-fat foods, I told him that these food choices draw excess water into the bowel, increasing stool output and worsening dehydration. Concentrated sweets, such as candy, cookies and cakes, as well as sweetened beverages like soda, juice and lemonade are all examples of simple sugars.

Understanding Stoma Output Levels

For people living with an ostomy, including those with SBS, I believe that understanding normal output levels is important for managing health. Typically, an ileostomy (post-op) produces around ~750mL per day, although output can be 1200mL or more per day initially. A jejunostomy, on the other hand, can produce significantly more—up to 6 liters per day. In contrast, a colostomy produces between 200-600mL daily. I tell my patients that it is important for the body to make at least 1000-1200mL of urine each day to protect the kidneys.

A high-output stoma occurs when output exceeds ~2 liters per day. This can lead to dehydration and the loss of essential minerals like sodium and magnesium, which are critical for overall health. For people with SBS, high stool output can significantly increase the risk of sodium depletion, with potential losses reaching up to 2430 mg per liter of output. I tell my patients who are experiencing high stool output and symptoms of low sodium, such as unexplained weight loss and fatigue, to contact their doctor.

Restricting Intake of Hypotonic Fluids

When I see patients with SBS who are experiencing high-output stoma in my clinical practice, I advise them to restrict the intake of hypotonic fluids like water, tea, black coffee, and sugar-free sodas. These fluids pull sodium (salt) into the small bowel, and bring water along with it, leading to increased stool outputs. In people with SBS, this can exacerbate fluid and electrolyte imbalances due to the lack of absorptive surface area for both salt and water in the remaining bowel. Drinking more water can worsen the condition by creating a cycle of increased ostomy outputs, associated dehydration and thirst for more water. Continue reading for rehydration options included in this article.

Dietary Factors Contributing to Dehydration

Foods that are low in complex carbohydrates and high in sugar can draw water into the gastrointestinal tract. These, too, can worsen stool output and cause fluid and nutrient losses for people with SBS.  I have seen firsthand in my patients that choosing complex carbohydrates, like white rice, potatoes, pasta, bread and bananas can help manage stoma output and improve nutrient absorption. These carbohydrates are easier to digest and absorb compared to simple sugars.

RECOGNIZING THE SIGNS OF DEHYDRATION

Did you know there are relatively easy ways to track hydration levels?

Urine Color

I tell my patients that monitoring their urine color can be a relatively easy yet effective way to keep tabs on their hydration levels. If the urine is darker than a pale yellow, it might suggest that the body is holding onto water rather than getting rid of it properly. Clear or light, yellow-colored urine reflects hydration. Darker shades of urine could signify dehydration.

Other signs of dehydration include:

  • Rapid weight loss
  • Higher stool output than total fluid intake
  • Less-frequent urination
  • Fatigue
  • Lightheadedness/Dizziness when standing
  • Dry mouth
  • Thirst

I tell my patients to consult their doctor if stool output increases, urine output decreases and they notice signs of dehydration.

Water-Tracking Apps

I have encouraged many of my SBS patients to set hydration reminders or alarms on their mobile phones. I have also suggested trying out water-tracking applications (or “Apps”). There are some water-tracking Apps that offer gentle hydration-related nudges throughout the day. Some Apps can help set goals and hydration-tracking progress. There’s even an App that lets users grow a virtual plant by staying hydrated! Searching for “water tracker” in an “App” store on your mobile device, tablet or desktop computer should bring up several options.

REHYDRATION

Did you know that Oral Rehydration Solutions are different than Sports Drinks?

Oral Rehydration Solutions (ORS)

When my patients with SBS are experiencing high output stomas leading to dehydration, I often try to incorporate Oral Rehydration Solutions (ORS) into their rehydration plans. ORS have a specific combination of sodium, carbohydrate and water in a special ratio that can enhance fluid absorption across the small bowel wall, even when the patient is experiencing diarrhea. In many of my SBS patients, I’ve seen this tailored blend help the body absorb those electrolytes like a sponge. However, ORS can be difficult for some people, because of the salty taste. Sometimes people find it helpful to make ORS into ice cubes or popsicles. Sugar-free flavoring can also be added to help improve the taste of the ORS.

Patients have asked me why they can’t simply buy Sports Drinks – such as basic electrolyte drinks – to rehydrate themselves. While Sports Drinks do contain electrolytes like sodium and potassium, as well as sugar, they are not ideal for SBS patients for effective rehydration. For example, they often have too much sugar and not enough salt. It is the special ratio of sodium, carbohydrate and water that can help with fluid absorption across the small bowel wall.

You can make your own ORS at home. Download a free-of-charge ORS recipe book here:

https://shortbowelsyndrome.com/Content/pdf/Recipe_Book_DIGITAL.pdf

If you are living with or caring for someone with SBS, I hope that the information that I have shared in this two-part article series helps empower you to bring questions about nutrition and hydration to your healthcare team. Consistent communication is critically important, and I encourage you to bring any concerns to your doctor, nutritionist, dietitian or another member of your SBS healthcare team.

Sometimes it can be challenging to find a healthcare provider who treats rare GI conditions like SBS. To check if there is a medical provider with SBS experience in your local area, visit https://shortbowelsyndrome.com/find-a-provider.

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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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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.

How to Stay Hydrated from a Marathoner with an Ostomy

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Ileostomate and athlete Collin Jarvis shares his recommendations for staying hydrated when you’re physically active. 

My name is Collin and I had ileostomy surgery in 2014 when I was on the Cross Country and Track & Field teams at the University of California – Berkeley. Staying hydrated was always an important aspect of my athletic performance, but after I had surgery, it became even more critical for me to drink enough fluids. Why? Because having an ileostomy can meaningfully reduce the body’s ability to get hydrated.1,2

Over the last decade I have continued to compete as an endurance athlete. Below are my top three tips for new ostomates looking to stay on top of their hydration:

Tip #1 – Make sure you are getting enough hydrating fluid throughout the day 

It can be challenging to keep up with fluid intake, especially when living with an ileostomy.3 I know this from personal experience!

Start by talking to your clinician about how much fluid you need on a daily basis. They will be able to point you to the best resources for your specific needs. General guidance is available online, but every body is unique. Keep in mind that the resources you come across online are going to be calculating fluid needs for a person who has all of their internal organs. So once you identify that baseline, ask your doctor if you need to increase your fluid intake above that level. In my case (i.e., as someone who is extremely active and has had their entire large intestine removed), I take in about 20% more fluids than what the average online calculator recommends.

Tip #2 – Be aware of when and how you are taking in your fluids 

Make sure to spread out the volume of liquid that you’re drinking as evenly as possible. In other words, take small and frequent sips throughout the entire day. This is important because our bodies are not perfectly efficient at absorbing the fluids that we put into them.

For example, you may have determined that you need around 100 ounces of liquids each day to meet your hydration needs. However, if you were to wake up in the morning and drink all 100 ounces right away, you would end up urinating most of that water out. In addition, drinking too much water at one time can dilute your body of the electrolytes it needs to properly absorb water which can exacerbate dehydration. Spreading out your fluid consumption evenly throughout the day is going to allow your body to work most effectively.

Keep reading on Hollister.com.

Hollister Incorporated is a proud sponsor of United Ostomy Associations of America and dedicated to delivering the highest standard of quality in ostomy care products. To learn more, visit www.hollister.com/ostomycare or call 1.888.808.7456.

 

References:
1. Justiniano, Carla F et al. “Readmissions With Dehydration After Ileostomy Creation: Rethinking Risk Factors.” Diseases of the colon and rectum vol. 61,11 (2018): 1297-1305.
2. Chen, Sophia Y et al. “Predicting the Risk of Readmission From Dehydration After Ileostomy Formation: The Dehydration Readmission After Ileostomy Prediction Score.” Diseases of the colon and rectum vol. 61,12 (2018): 1410-1417.
3. Absorption of Water and Electrolytes (colostate.edu) – http://www.vivo.colostate.edu/hbooks/pathphys/digestion/smallgut/absorb_water.html

 

Collin received compensation from Hollister Incorporated for his contribution to this article. The testimonials, statements, and opinions presented are applicable to the people depicted. These testimonials are representative of their experience, but the exact results and experience will be unique and individual to each person. Please make sure to consult with your healthcare professional for further guidance and instruction. The information provided herein is not medical advice and is not intended to substitute for the advice of your personal physician or other healthcare provider. 

Diet and Digestion with an Ostomy

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Twelve years ago, Sarah had ileostomy surgery after living for years with ulcerative colitis. Ostomy surgery has allowed Sarah to get back to eating foods she loves, and she says “it has been the best thing for me.”

Sarah now eats many of the same things she did before her ileostomy and enjoys them more than ever. Here are some tips that Sarah has learned over the years for eating, digestion and activity.

  1. Drink up. Hydration will always be an issue, so drink lots of water. I like to toss in a slice of lemon for a little extra flavor.
  2. And chew some more. If it looks the same coming out as it did going in, you need to chew those foods better.
  3. Start slow and build up. If you’re right out of surgery, you might be more sensitive to foods than you will be six months down the road. Use trial and error to see how foods work for you and be sure to track the results. If you’ve had ileostomy surgery, add high-fiber foods back into your diet gradually to make sure you can digest them well. These include raw fruits and veggies (especially with skins), nuts, seeds and popcorn.
  4. Input always makes output. With an ileostomy, your stoma is going pretty much all the time, so it’s important to track and manage your input and output. For example, if I was going on a job interview, I would not eat a big meal right before, because my stoma may create output and my pouch would fill up – and you don’t want that during an interview!
  5. Do what you love! I go on bike rides, I go boogie boarding. It may take a little time and tracking to know what works best for your body, but you can do all those things and keep your stoma safe.

Sarah, with the help of the My Ostomy Journey App, now has the ability to track everything digitally. She can also use the app to contact someone for additional support, or if she has any questions.

Sarah says, “The My Ostomy Journey app makes it easy for us to keep track of whether we’ve had enough water or what foods we eat. I wish I’d had this resource right after surgery, especially when I was first figuring out what does and doesn’t work for my body!”

 

Editor’s note: This blog is from one of our digital sponsors, Convatec. Sponsor support along with donations from 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.

Holidays with an Ostomy

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By Molly Atwater

Ah, November… the leaves are changing colors and falling from the trees, the jack-o-lanterns have been put away and exchanged for candy canes, and the Black Friday sales emails have started trickling into our inboxes. That can only mean one thing: the holiday season is upon us! It’s safe to say that our celebrations in 2020 will be a little different than what we’re used to. A non-traditional Thanksgiving or holiday gathering can be hard on all of us now that the CDC is suggesting limiting gatherings to just those in your household. (They’ve got some suggestions on safer alternatives to consider here.) Regardless of how we’ll celebrate, there are still lots of cookies to bake, memories to make, and laughs to share. But what does that mean for those of us with ostomies? The holiday season is inherently stressful, but adding medical issues on top can feel overwhelming. But fear not – with a little extra planning and mindfulness, you can handle the next few weeks like a pro. Here are a few tips and tricks to make sure you have a HAPPY holiday!

Travel Prepared

If you must travel during this time, make sure you pack more than enough supplies. Odds are you won’t need all of them, but it’s always better to be safe than sorry. My rule is to figure out how many bag changes I expect to perform while I am away, and then pack double that amount of supplies.  That way, even if I have to do extra bag changes, I never have to worry about running out of my necessities. I also pack in-bag odor reducers and a small bathroom aerosol spray so I don’t have to feel self-conscious about any expected or unexpected ostomy smells.

If your holiday plans include traveling by airplane, pack your supplies in your carry-on. Airlines are notorious for misplacing luggage, so keeping your supplies with you at all times can save you a lot of worrying. Also, go ahead and download one of the UOAA TSA advocacy cards to make your security checkpoint experience easier. For even more peace of mind contact TSA Cares 72 hours before your flight for additional assitence. Don’t forget to throw an empty water bottle in your carry-on to fill up once you’re at your gate to prevent dehydration. 

Enjoy Meals with Peace of Mind

When it comes to eating, everyone’s post-ostomy diets are different. For some, ostomy surgery can open up foods that were previously off-limits, while for others, options might be more limited. Regardless of your digestive system’s abilities, take the opportunity to make your meals a little more festive! If you can eat things you’ve missed for a while, go for it! But if you’re dealing with more restrictions, all is not lost. Maybe you could make macaroni and cheese with turkey-shaped pasta or try your hand at some homemade applesauce.

Chew, chew, chew! A lot of the foods we eat over the holidays are out of our normal diet, so give your body some help with digesting. It’s not a ton of fun to step away from the festivities to deal with a blockage! If at all possible, it’s also helpful to stay on your normal eating schedule. With all of the uncertainties that come with the holidays, having one steady touchstone can really help.

Alcohol is a staple for some families’ celebrations, but it can be very dehydrating. That’s an issue for everyone, but it’s crucial for those of us with ostomies. Try to alternate your cocktails with a glass of water or your electrolyte beverage of choice. Don’t forget that with the weather cooling down, warm drinks like tea also count as hydration!

Trust Your Emotions

The holidays can be emotionally challenging for everyone, but for those dealing with chronic conditions, things may feel a little tougher.  If you are feeling blue, that is ok! All emotions are valid, so give yourself the time and space to feel sad or angry and to grieve what was.  But it’s also a great time of year to reflect on the things that you are grateful for, whether that’s your support system, your health, or even just for making it through this crazy year.

Some people don’t mind talking about their medical conditions, but if you’d rather not focus on your ostomy this holiday season, think of some ways to steer the conversation in a different direction. The questions people ask typically come from a good place, but you are fully entitled to a few hours without thinking about your health.  Brainstorming quick responses or coming up with other topics to bring up instead can help you feel more prepared if you do find yourself in a situation where you want a quick “out.”

Listen to Your Body

Dealing with chronic health conditions is exhausting, and putting on a smile when you aren’t feeling great makes it that much harder. Finding others who can accept and acknowledge that things are hard instead of offering common and well-meaning phrases like “it will get better” and “stay strong” can be extremely helpful and validating. Nobody wants to be a Scrooge during this time of year, but having a safe space where you can feel seen and heard can bring you back into the celebration faster than wallowing alone.

Find an outfit that makes you feel AMAZING with your ostomy! Since a lot of us have spent more time in sweatpants than ever before thanks to quarantine, take the opportunity to wear something that makes you feel confident. It doesn’t have to be fancy – maybe just your favorite pair of pajamas or an extra-festive mask!

Get Creative

If you can’t participate in some of your favorite holiday traditions, now is the time to get creative! There might be ways to augment some existing traditions, like making different cookies without hard-to-digest ingredients, or you can create brand-new ones.  Maybe it’s time to introduce a holiday movie marathon or invite your friends to join you on a wintery walk through the woods! Whatever you choose to do, I encourage you to find an activity that brings you joy.

The holidays might feel tricky to navigate, but with a little extra preparation, you can remove ostomy stress from your list of worries.  Whether you’re a new ostomate or a seasoned pro, I encourage you to find your own tricks for making this time of year as merry as possible. From all of us here at UOAA, we wish you a happy and healthy holiday season!

 

Molly Atwater is UOAA’s Director of Young Adult Outreach. After struggling with chronic constipation for decades caused by a collagen deficiency disorder, she underwent ileostomy surgery in June 2016. In addition to serving with the UOAA, Molly runs a social media account (“MollyOllyOstomy”) that aims to teach her more than 20,000 followers about life with an ostomy and other chronic illnesses. She lives in Northern Virginia with her fiancé, Thomas.

The Heat is On! Hydrate with an Ostomy

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By Ellyn Mantell

While walking this morning it occurred to me that for many Ostomates, the heat is very challenging. Ileostomates, in particular, are prone to dehydration because our stoma is always productive. In Mother Nature’s inimitable creation, the colon, or large bowel, is responsible for absorbing fluids and allowing them to be reabsorbed into the body. Since ileostomates either no longer have a colon or it is no longer being used, the precious fluids are flushed from the body through the stoma. Hence the rapid filling and refilling of the pouch, which can be worse in the heat.

Naturally, drinking water is advised. UOAA’s new ostomy nutrition guide recommends you “Make a habit of drinking water throughout the day. At the same time, limit or avoid beverages with added sugars and artificial colors and sweeteners.”  Many of us may have difficulty drinking enough to support our anatomy, so we need to be mindful of symptoms that we are lacking the hydration/dehydration balance.

Some symptoms of dehydration include headache, fatigue, dark or decreased urine, lack of concentration, dry mouth, feeling disoriented, shortness of breath, dry skin, stomach cramps. Additionally, leg cramps, loss of appetite, drowsiness, tingling in fingertips and muscle weakness are all concomitant to dehydration.

Learning to live with the chronic dehydration possibility presented to ostomates is certainly attainable. For me, since I do not have a high blood pressure issue which might preclude adding salt, it means adding it frequently at meals. It is strange to servers at restaurants when I ask for the salt shaker, and many have asked if I mean the pepper shaker? We have become a salt-resistant society. But there are those of us who need it for our fluid balance. Additionally, I have a handful of a salty snack before bed, such as pretzels, since nighttime muscle cramps can be very painful and cause sleep deprivation. I keep a bottle of tonic water in the refrigerator, as well as a jar of pickles for those times when nothing else works. For muscle cramps I recommend an over the counter foam moisture. The manufacturers recommend using it prophylactically at night, but I have found it usually very fast-acting when I have foot or leg cramps, so I apply as needed.

Many Ostomates swear by sports drinks like Gatorade, but truthfully, although I have a bottle in the refrigerator at all times in case of fever, I find it difficult to drink. However, if presented with the option of drinking it or winding up in the Emergency Room for fluids, I will imbibe gladly! It’s recommended you dilute sports drinks to reduce the sugar content as well. At some of our Support Group meetings I have heard of many different electrolyte balancing drinks and powders, so you may find one that works for you.

UOAA recommends you drink 8–10, eight-ounce glasses of water/fluid daily. If you have a urostomy this also helps prevent UTIs and keeps urine diluted. Concentrated urine also can cause odor.

View UOAA’s Eating with an Ostomy Guide for more hydration tips such as avoiding excess caffeine, eating foods with a higher water content and sipping your liquids slowly.

It has been recommended that Ostomates drink more than simply water, since it flushes through the system and little gets absorbed before it exits through our pouch. Drink with meals, since food slows down the transport of fluids. Bring fluids with you when you are out and about, since being busy may cause us to forget the responsibility we have to stay hydrated. Lastly, in addition to feeling awful when we are dehydrated, being in that state puts a great deal of pressure on our kidneys, and can lead to kidney failure and lightheadedness, which can lead to falling.

Although this sounds ominous for summer fun, being mindful and smart will help us to relax and enjoy ourselves…after all, with the Covid experience, we have learned to grab the good and be grateful we are as healthy as we are!

 

Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. You can follow her personal blog at morethanmyostomy