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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My UOAA Story- Stanley Cooper

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20 years ago, UOAA formed and continued a legacy of advocacy and support for the ostomy community.

I had my Ostomy Surgery in 1992 due to ulcerative colitis. At that time the national organization for our community was the United Ostomy Associations (UOA). Around that time UOA was working on a project to increase the allowable amount of ostomy supplies a person can order. They wanted to double the amount that a person could order, because if a patient had skin problems or leakage problems a person would need more supplies than normal.  As it stood the allowable wasn’t enough and if a person needed more they had to be paid for out of pocket and UOA members were calling to see if something could be done. That was the start of the Advocacy program at UOA.

When UOA folded in 2005 former members put together the new organization, United Ostomy Associations of America (UOAA) it was determined that the new organization would have an Advocacy Program from the start. That was a confirmation to us all, as to how important an advocacy program is to UOAA and its members. Today, that legacy continues with an active advocacy network and national advocacy goals everyone should be involved with.

When I had my surgery, I was a married man with four daughters and worried about the future and whether I would be able to provide for them. My ET Nurse (Entrostomal Therapist), today’s WOC Nurse, gave my wife information on the local support group. My wife and I attended a meeting and after talking to a few attendees, I began to feel a lot better about myself.  I was so appreciative of the Information that I had received that I decided I needed to do more and at the next meeting, they had sample letters that they were asking people to type up and send to their senators. One member brought the letter back after a UOA National Conference and made copies of it. My brother had given me his old computer and printer so I retyped the letter up and printed out 50 copies, printed out envelopes and donated the stamps to send them for the group. All someone would have to do is sign the letter, put it in the envelope and mail it.  After that, the board of directors of the support group asked me and my wife to join their board. We gladly accepted.

We went to two of our first national conferences in 1995, what an eye-opener for both of us. there were so many sessions that both of us wanted to attend but couldn’t make it to all of them because some were at the same time, so my wife said,” how about we split up and report back to each other at the end of the day.” It was fantastic. A few years later UOA decided it was going to dissolve. We were devastated.

During the holiday season Stanley Cooper enjoys playing Santa Claus in the Philadelphia area.

We thought we were going to our last conference in Anaheim, California when it was announced that a new organization was forming. That was a huge relief to me and my family to know that there would be a national organization with the same values as the former organization to fulfill the emotional needs and be able to help any future family members or friends that someday may find out that they need to have an ostomy.

UOAA has continued the tradition and I was honored to volunteer when it came to Philadelphia in 2019. This year UOAA is hosting its 9th National Conference August 14-16, 2025 in Orlando, Florida.

Today UOAA also has an outstanding website here with ostomy.org that patients and medical professionals can go to and print out information on ostomy management and more. This is a huge help to new ostomy patients and ostomates who have had their ostomies for a while and are having problems can solve it on their own or postpone their need until they can get to see a doctor or WOC Nurse.

UOAA also has a Network of Affiliated Support Groups around the country where patients can go to a meeting and talk to other ostomates about having an ostomy, get answers to their questions such as will I be able to return to work? What type of clothing will I be able to wear? Will I be able to have relations with my husband, wife, boyfriend, girlfriend or significant other? Just some of the questions that have come out and there are hundreds more. Local Support Groups are vital to all ostomy patients and can be found on UOAA’s website with their support group finder.

Ostomies are lifesavers and I’ve been active in my retirement as a bakery worker and have gotten to serve as a Santa Claus in my community around Philadelphia.

We continue to support Ostomy Awareness Day each year and also any advocacy actions we can take on a state or local level. We’re all lucky UOAA is here for our community. Happy 20th Anniversary!

If you’d like to share a story about how UOAA has helped you or others in the past 20 years with ostomy advocacy, support, educational resources, events or more- email us at info@ostomy.org

BELIEVE in the Unseen Magic of All the Holidays and UOAA Advocacy

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“To believe in the things you can see and touch is no belief at all. But to believe in the unseen is a triumph and a blessing.” – Abraham Lincoln

By Jeanine Gleba, UOAA Advocacy Manager

UOAA’s Advocacy Committee and grassroots advocates were busy in 2024. We do all sorts of advocacy work throughout the year for the ostomy and continent diversion communities. A lot of our advocacy work is unseen, but you should know it is there.

For example behind the scenes we supported several efforts with other coalitions and like-minded patient organizations by signing onto ten different letters that were sent to Congress many with positive results and we had several open action alerts on our advocacy platform supporting Federal legislation. We also continue to advocate with the Access and Care Coalition in our efforts with the Medical Directors from the Centers of Medicare and Medicaid Services (CMS) to make improvements to the ostomy policies and processes in particular for those beneficiaries who medically need greater quantities of products than what is allowable under the current policy.  We won’t stop until this is resolved.  Another example has been challenges with billing codes that were approved by CMS a couple of years ago for irrigation sleeves, but Medicare beneficiaries have been unable to get the quantities they need. Using the misleading CMS quantity chart, suppliers are interpreting the quantity of “1” as 1, each.  However, the 1 actually represents a 1 month supply.  For reusable sleeves this equates to 4 sleeves per month and for disposable sleeves it is the quantity that the beneficiary needs. UOAA worked with the CMS billing contractor Noridian to help clarify this to ensure irrigators obtain the supplies they need.  Together we wrote this announcement that was sent to the supplier community for many weeks in 2024 and it was included in Noridian’s weekly Monday educational series.  

Speaking of holiday wishes, have you ever wished there was an outpatient ostomy clinic near you but didn’t know where to look? In 2024 UOAA’s Advocacy Committee unveiled a new “Outpatient Ostomy Services Locator” with close to 700 listings. 

“This directory, a resource that will enhance an ostomate’s recovery and get them back to their life, is just what the doctor ordered,” -Guy Orangio, MD, FACS, FASCRS

If you still can’t find a place for ostomy care and want to do something good for the ostomy community in your area, consider working with a local Affiliated Support Group leader or local hospital and/or ostomy nurse to open one – learn how to with UOAA’s new course Roadmap to Establishing Outpatient Ostomy Services which was released in 2024…and better still we have partnered with AppleTree CEU and now offer free Continuing Education credit.

Internally we revamped the advocacy priority webpage on ostomy.org to make it easier for you to know what our primary issues are and where we stand. View it here.

Did you see our new advocacy resources created in 2024? One of the newer advocacy campaigns is advocating to stop the practice of non-medical switching of ostomy supplies. You can learn more and see the resources we created on this new webpage. This year for Ostomy Awareness Day we created a new toolkit on how to obtain a Governor proclamation. As a result, thanks to our grassroots advocates half of the United States obtained proclamations!

On top of that we continue to make strides in the efforts to improve coverage and access to ostomy supplies in state Medicaid plans. Throughout 2024 we shared when Idaho, Maryland and New York made such improvements. 

We’ve also seen our advocacy work influence others and in 2024 our Ostomy and Continent Diversion Patient Bill of Rights were the model for the Intermittent Catheterisation Clinical Practice Principles. They were also used in soon-to-be-published research to improve patient outcomes and a colorectal surgeon fellow is now ensuring these best practices are being provided to ostomy patients in a North Carolina VA hospital. Slowly but surely, we are making a difference!

Lastly, our advocacy team contributed 10 blogs to ostomy.org to educate ostomates, keep people informed and inspire others.

And for those looking for a peek into the future:

As part of UOAA’s ongoing efforts to advocate for more ostomy nurses and increase ostomy education with medical professionals, in early 2024 we proposed a collaborative effort between UOAA and the Wound Ostomy Continence Nurses Society®. Together we designed a fun and exciting campaign entitled “Back to Your Nursing Roots” to encourage nurses with an ostomy certification to return to their nursing roots and plant ostomy seeds with new nursing students! We are currently in the pilot test phase with 12 certified ostomy nurses. The campaign will “bloom” in March 2025! 

Believe in us. Most importantly, when you believe in yourself magic can happen.

Christmas with an ostomy, all wrapped up

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By Convatec

We want to help everyone in our ostomy community have a wonderful holiday.

So, we’ve put together this guide to share our top tips. In our 12 ways of Christmas, you’ll find advice about everything from stocking up on supplies to eating and drinking in moderation. If you have a child with an ostomy, you’ll find tips on how to prepare for Christmas day. You’ll also find our Accessories Wish List, featuring our most popular accessories.

12 Ways of Christmas

The countdown to the big day has begun. To help you prepare, we’ve put together our 12 ways of Christmas. Share your tips on our social media channels using the hashtag #OstomyHoliday

1. Stocking up

Now’s the time to order more ostomy products if you haven’t already done so.

2. Get wrapping and packing

If you plan to travel, make a checklist of everything you need to pack or better still, pack an overnight bag now.

3. Eat, drink and be moderate

Avoid the risk of bloating or even a blockage by enjoying your favorite foods in moderation.

4. It’s all about the bubbles

Remember champagne, sodas and other carbonated beverages can cause ballooning and indigestion.

Check out our top ostomy nutrition tips here

5. Add Accessories to your wish list

The holiday break is a great time to give ostomy accessories a try. If you’ve got an ileostomy, give Diamonds™ Gelling Sachets a try – just pop one in your pouch to thicken your output and reduce gas.

6. Beware of what’s hidden in the dessert

If you’re one of the few who enjoy fruitcake, be aware of the ingredients and which might cause irritation.

7. Marshmallows aren’t just for S’mores

Many people with an ileostomy find that marshmallows are a great way to quickly thicken output.

8. Enjoy it

Sometimes the holidays can be stressful, even without an ostomy! Being knowledgeable and prepared can ensure you have a great time.

9. Dreaming of holiday food?

From a vegetable overload to rich, spicy foods, the holiday menu is packed full of potentially gas-inducing foods. Many people find they can enjoy these foods in moderation. And remember, if you’re at someone else’s house, it’s not rude to refuse.

10. Don’t expect the Santa Express…

If you’re traveling by land, air or sea, there’s likely to be a limited service. So, it’s a good idea to keep a supply of pouches and supplies within easy reach, just in case.

Check out our top travel tips for ostomates here

11. Stay hydrated

It’s tempting to hope that all that soda and eggnog is keeping you hydrated, but in reality, the opposite is more likely to be true. Alcohol is a diuretic, so if you decide to indulge a little, make sure to also drink plenty of water.

12. Take it easy the day after

Whatever day you celebrate on, it can be hugely fun, but also tiring. So be sure to plan to rest the day after.

Let’s make it all about stockings, not pouches: holiday tips for children with an ostomy

We all want our kids to wake up on Christmas morning (not too early!) thinking about their stockings, not their ostomy pouches. Best of all, there are things we can do as parents to help.

Plan ahead

You’ve already got so many things to think about, so it’s a good idea to make a checklist. Have you got enough supplies? If you’re going away, have you packed a bag?

Eat ahead

It can be a good idea to give your child bland food a day or so before a big holiday feast, to compensate for any overload the day of.

Sleep easy on Christmas Eve

You’re likely to already have an established bedtime routine. If so, try making it a bit earlier so you and your child are not rushed. Remember, to minimize the risk of leakages, avoid eating too close to bedtime and make sure the pouch is completely empty.

Wrap the mattress in a plastic sheet

If you’re not already doing so, get wrapping! A plastic sheet is easy to clean, avoiding any unnecessary upset.

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.

Discarding Pouches Discreetly But With Dignity

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Lynn Wolfson, UOAA Director

As ostomates, we often feel self-conscious in public but deserve the same respect as anyone else. We don’t want to be singled out or face discrimination because of our ostomies. However, we also have a responsibility to leave a positive impression on others and the places we visit.

Recently, while flying, I had an unusual interaction with an airline attendant. Before I entered the restroom, she approached me to ask if I needed anything. Though her inquiry seemed strange, I assured her I was fine. After I left the restroom, she asked if I had disposed of any bodily waste in the trash. I was surprised by the question and said I hadn’t.

As a teacher, I saw this as an opportunity for education. I asked the flight attendant why she had asked such a personal question. She explained that she had noticed my ostomy through my clothing and that her grandmother had also had an ostomy, often discarding used bags in the trash without proper disposal. Her concern clarified her question. While the inquiry was inappropriate, it underscored how improper ostomy hygiene can reinforce negative stereotypes.

I explained that her grandmother likely had a colostomy, while I have an ileostomy with a drainable pouch. I suggested that her grandmother should have used a disposable bag, like a grocery or Ziplock bag, to seal or knot before disposal. This practice helps reduce mess and odor and allows ostomates to discreetly dispose of their pouches. It’s important for all ostomates to follow this practice at home, in others’ homes, and in public spaces. Many manufacturers provide plastic bags with the pouches for this purpose.

It’s crucial for us to carry or request a bag for disposing of our ostomy pouches and to knot these bags before discarding them.

For new ostomates, if you find yourself in a public restroom without disposal bags, wrap your used pouching system in toilet paper and place it in the wastebasket. To minimize odors, consider using one of the many deodorizers available from ostomy supply providers. Some deodorizers are drops that can be added to the bottom of the pouch, while others are air freshener sprays.

To minimize splashing when draining a pouch, try sitting backward on the toilet seat and placing toilet paper in the bowl before draining. It’s worth noting that at past UOAA conferences, hotels have commented on how clean and hygienic UOAA groups are for their cleaning staff compared to the general public.

Following my experience, I’ve advocated with the airline to consider adding a universal sign in the lavatories to provide guidance on the proper disposal of medical supplies. It would be beneficial if airplane restrooms included bags for this purpose, which could also be used for baby diapers, sanitary napkins, and tampons.

In summary, it’s crucial for us to carry or request a bag for disposing of our ostomy pouches and to knot these bags before discarding them.

The Impact of Advocacy: Healing Yourself and Uplifting Others

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By Nicole Richards

“When you stand and share your story in an empowering way, your story will heal you and your story will heal someone else.” – Iyanla Vanzant

I believe this quote accurately describes the importance advocacy is to the ostomy community. Living with an ostomy is a true test to one’s physical and emotional health. Raising awareness is sharing our own personal journey of those physical and emotional experiences with others. It’s only with this vulnerable truth, that we allow other ostomates to normalize their situation. Through advocacy we not only work on our own healing journey, but we inspire and support others on theirs.

This past summer I answered the call to take action from UOAA, and I filed a proclamation request with my state’s Governor for Ostomy Awareness Day. While writing the request I opened myself up to a very vulnerable part of my past that I had stuffed away and never fully processed. More specifically, writing the proclamation request made me realize just how much I minimized my own experience of what life was like pre-ostomy. Another realization I had was that I needed to be more compassionate and forgiving of myself for all that I had been through during that time. This was such an “ah ha” moment for me. I am very grateful for the opportunity I had to advocate and share my story. Had I not have taken the time to revisit the years of my life leading up to ostomy surgery I may not have had the opportunity to heal that part of my past.

The Power of Your Story

It is not only healing for ourselves; it is validating for others who are going through similar struggles. Telling your own personal story helps other ostomates feel less lonely on their ostomy journey; it creates connection and community. Talking about your experiences is not just an act of self-care but an act of service to others.

We experience life differently from one another. My perspective and experience could be completely opposite than that of the next person. With that being said, we tend to resonate with people whose journey is similar. Additionally, many of us not only have an ostomy, but we have an underlying health condition that brought us to the point of needing ostomy surgery. The fact that there are numerous reasons a person might need an ostomy makes us such a diverse group of people. This is why your unique ostomy story matters so much.

These personal stories are more memorable than facts, so they are indispensable in advocacy efforts.

By listening to other people’s perspectives and experiences we create awareness and learn something we didn’t understand. Telling your story is not only important for healing of yourself and others, but ostomies carry many misconceptions. Unfortunately, those misconceptions lead to stigmas and barriers. Through advocacy and sharing our story we aid in the breakdown of those barriers and collectively shed light on the realities of living with an ostomy. Equally important when it comes to advocating on issues for the ostomy community, your voice matters! By telling your story, legislators and policy-makers hear how their constituents are affected. These personal stories are more memorable than facts, so they are indispensable in advocacy efforts.

Based off my interactions with the ostomy community, I can almost guarantee most of us are willing to go out of our way to provide support to one another. Furthermore, I believe most ostomates feel a sense of purpose and fulfillment by helping one another. We are strong and resilient beings who have so many stories and experiences to pass on that could deeply encourage and uplift another in the ostomy community, provide awareness to future ostomates and those struggling with their ostomy.

So, where are you in your healing journey?

I recently read a book called “You Can Heal Your Life” by Dolores Hay. She refers to starting the healing process by “cleaning your emotional closet.” You go in, you pick something up, you examine it, then you either store it away for later or you get rid of it. I love this analogy because it allows you to briefly examine the emotion and decide if now is the time to process and release it, or store it away for later when you feel strong enough to do so.

Are there parts of your ostomy story that have been stuffed away in your emotional closet? Are you ready to look at it so you too can get rid of it? Are you ready to impart some of those experiences that may help others and provide awareness? Maybe through advocacy you can find healing too.

My guess is that if you are an ostomate reading this, you have a story to tell. A personal journey someone else would love to hear, connect with, and find encouragement from. You may keep someone else from feeling alone in their ostomy journey. You just never know who needs to hear from you and your unique lived experience!

Editor’s note: If you are interested in getting more involved with UOAA and advocating for the ostomy community, join their Advocacy Network. Have an ostomy supply or care access issue? Your story matters. Contribute your story for national advocacy. Or you can share your ostomy story on UOAA’s Wall of Love!

Managing the Challenges of Pancaking

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By Janet Stoia Davis RN CWOCN FCN and Janice C. Colwell APRN, CWOCN, FAAN

 

What is pancaking?

For a person with a fecal stoma, emptying an ostomy pouch can at times be slow, messy and frustrating—especially if they find that stool is stuck at the top of the pouch around the stoma. When stool is thick and dry, a phenomenon called pancaking may occur. Thick stool exiting the stoma that does not fall to the bottom of the pouch can form into the shape of a pancake at the top of the pouch, hence the term “pancaking”.

Why can pancaking be a problem?

Thick pasty stool can remain over the stoma, making its way under the pouch adhesive and potentially lifting the adhesive/pouch. When this occurs, the stool contacts the skin around the stoma causing leakage. This leakage can damage the peristomal skin, lift the pouch from the skin, and result in odor and seepage of stool onto clothing.

Who is at risk for pancaking?

Anyone with a fecal stoma can experience pancaking, but it is more common among people with a colostomy. Colostomies are created in the colon or large intestine (they are given two, names which confuses people, but they are one and the same). The colon’s job is to absorb or “suck” water out of the intestinal contents, and as stool travels through the colon it becomes thicker. By the time it reaches the final section of colon on the left side of the body, it can be pasty and dry. Many colostomies are created on the left side of colon, making the stool pasty, dry, and thick. When stool is expelled from the stoma, it may not move away from the stoma, getting stuck at the top of the pouch leading to pancaking.

Individuals with ileostomies can also experience the challenges of pancaking, but it is less common and will depend on the consistency of their stool. In some cases, form-fitting clothes may constrict the pouch and flatten the stool, preventing it from falling to the bottom of the pouch.

What can be done to decrease instances of pancaking?

For some people, increasing fluid intake can make the stool less thick and pasty, which may allow it to travel away from the stoma and drop to the bottom of the pouch. Stool softeners can be taken orally to increase the moisture content of the stool which may also facilitate the movement of the stool into the bottom of the pouch. If an individual’s clothing fits snugly over the pouch, wearing a looser fit may also help decrease the incidence of pancaking.

Some pouching systems have a built-in filter that helps air escape the pouch and deodorizes the gas. However, if the filter removes all air from the pouch, it may create a suctioned environment that makes it difficult for stool to slide to the bottom. A sticker for the gas filter (provided with some pouches for underwater use) or a piece of tape over the filter may help avoid the vacuum effect in the pouch. This will vary by individual.

The use of an in-pouch lubricant can facilitate the movement of stool away from the stoma and into the bottom of the pouch. These lubricants can be applied to the inside of the pouch one or more times per day. This creates a slick surface on the inner lining of the pouch to help thick stool slide to the bottom of the pouch and prevent it from pancaking over the stoma. Lubricants can be used in both drainable and closed end pouches.

In addition to pancaking reduction, a lubricant may also make pouch empties faster and cleaner. Several companies make lubricant that can be used in the pouch. A new company, Revel, has placed special emphasis on pancaking and drain time reduction. Revel created a new type of lubricant using a technology called LiquiGlide that creates a long-lasting slippery surface on the inside of the pouch. Their product, It’s in the Bag, can last up to 24 hours, alleviate pancaking, and decrease pouch drain time. This product has been used by people with a fecal stoma who reported a decrease pancaking and emptying time as well as leaving behind an overall cleaner pouch.

Revel is a proud sponsor of United Ostomy Associations of America and dedicated to creating products that make significant improvements in the lives of ostomates. To learn more, visit https://revelostomy.com/

 

Editor’s note: This blog is from one of our digital sponsors, Revel. 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.

We Are Living Proof Ostomies Are Lifesavers

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Fall Into Ostomy Awareness

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Ostomy Day or Ostomy 5k- This is the Time to Get Involved

Whether you attend an in person or virtual event, make this be the year you get off the sidelines and discover the power of ostomy awareness. Learn more about all the ways to get involved on our Ostomy Awareness Day (OAD) web page.

“Ostomies Are Lifesavers” – this simple message can pack a big punch when you hear it from someone you know. Whether you post to friends and family on social media or confide in a few people, it can help dismantle stigmas and open hearts and minds. Everyone benefits when you state “I Am Living Proof that Ostomies Are Lifesavers” and reflect on the life you have enjoyed because this surgery exists.

To share your message with UOAA and others consider sharing a video, photo or statement on our online Wall of Love. #IAmLivingProof #OstomiesAreLifesavers

Virtual events to celebrate OAD

Events this week kick-off on Thursday, October 3, with a special Virtual Art Expression Class in collaboration with Connecting Pieces. Have fun, experience some artful healing and connect with others to decorate an ostomy pouch or anything you’d like. Register today! $10 child, $25 Individual, $35 Group

On Saturday, October 5, Ostomy Awareness Day, WOCN® Society is hosting a virtual Ostomy Education Day. Caregivers, medical professionals seeking CRE credits, and anyone in the public wanting to learn more about ostomy care are welcome to join this free event.

On Saturday you’ll also have the chance to connect directly with our inspiring Ostomy Awareness Day Champion Kimberly Holiday Coleman. Visit UOAA’s Instagram Page @UOAA_ at 12 noon Eastern Time (9am Pacific Time)  for a special Instagram Live Q&A – and feel free to ask her anything!

The Ostomy 5k- Not just for Runners

It’s a celebration of resilience and a gathering of ostomy awareness supporters no matter how far you can walk, run or roll. Virtual 5k participants have gone the distance by using a treadmill, swimming, kayaking, riding stationary bicycles, and even horseback riding! Be sure to share your photos no matter where you do it! 

The in-person Run for Resilience events are a mix of timed runs and fun runs as well as scenic walks and all are very family-friendly. Registration is still open and everyone is welcome to participate or simply gather and cheer on the resilience of the ostomy community!

The events are held on scenic greenway and park locations in Durham and Birmingham, city walkways outside Chicago in Downers Grove, riverside trails in Nashville and Northwest Arkansas, to mountain valleys in the Poconos of Pennsylvania and Meridian, Idaho.

The Trumbull County Ohio walk/run is ready for any weather. It will take place on an indoor track at the Niles Wellness Center. They’ll have a free mobile health screening service, a raffle and refreshments.

 

Locations like North Carolina are just as well known for their amazing silent auction items that are not to be missed. Local DJs, like Susie Q in Rogers, Arkansas, add to the festive atmosphere of these events.

All events have snacks and hydration and a variety of local and national sponsors’ tables to visit.

Celebrate with our Run for Resilience Sponsors

Sponsors add to the fun and awareness atmosphere of our Ostomy 5k Events Nationwide.

Coloplast is the Exclusive Diamond Sponsor of this year’s Run for Resilience Ostomy 5k. Representatives will be on hand to answer your questions and show off supplies at the events nationwide with the exception of Alabama. Check your race bags for a special sticker and magnet as well. Coloplast is also hosting an Ostomy 5k event for staff on the campus of their Minneapolis headquarters.

Revel, a new national sponsor this year, is excited to be a part of Ostomy Awareness Day and  proud to be supporting UOAA’s mission to advocate for the ostomy community. Revel will be hosting a “no-pancaking” breakfast with a full waffle bar at the founding race in Durham, NC! They’ll also be serving up samples of It’s in the Bag and free swag at booths in Durham, NC; Niles, OH and Downers Grove, IL.

Hollister is proud to be a returning sponsor this year and will have representatives and fun activities at all the national event locations. As we approach #OstomyAwarenessDay on October 5th, Hollister wants to hear about your plans to celebrate the ostomy community! For ideas on how to get involved, take a look at their activities.

Other Gatherings Nationwide

For more opportunities to meet others and learn about ostomy products check our UOAA Event Calendar for info on Ostomy Fairs and Affiliated Support Group gatherings being held to celebrate the day.

Don’t forget to let us know how you choose to make a difference on this day or in the future. Whether you got a proclamation passed where you live, or want to model that ostomy awareness t-shirt we want to see it! Email us at info@ostomy.org.

Awareness Saves Lives: Celebrating Ostomy Awareness Day

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By UOAA Advocacy Manager Jeanine Gleba and UOAA Communications and Outreach Manager Ed Pfueller

“If you believe in great things, you may be able to make other people believe in them, too.” ~ Oliver Wendell Holmes

UOAA’s greatest national advocacy effort to raise ostomy awareness is Ostomy Awareness Day. It is held annually on the first Saturday of October. By raising awareness that this is a life-saving surgery we are steadily dispelling fear and misconceptions and erasing stigma. 

The most significant aspect of Ostomy Awareness Day is that we empower people living with ostomies. Every time a person raises ostomy awareness, it has the power to save and transform lives. They show the world their resilience and that they are leading fulfilling lives with their ostomy.  

Get inspired to share your story after listening to this year’s Ostomy Awareness Day Champion Kimberly Holiday-Coleman share her story.

A simple way to share your personal story about how having an ostomy has saved or changed your life is with your family and friends on social media and use the hashtags #OstomiesAreLifesavers,  #OstomyDay2024 or #IAmLivingProof and tag UOAA.  You can also share our #OstomiesAreLifesavers “giphy stickers” on social media (search @UOAAOstomy).

Even if you are not on social media you can click here to record a video automatically or leave a text response or photos for our online ‘wall of love’ gallery of “Ostomies Are Lifesavers” stories.

We hope you can attend the festive atmosphere of one of our eight Run for Resilience Ostomy 5k events around the country or share a photo in your Ostomies Are Lifesavers t-shirt you get when registering for the Virtual Ostomy 5k. However you choose to celebrate, let us know!

To raise much needed ostomy awareness in your community please consider writing a Letter to the Editor of a local newspaper or work behind the scenes by sharing our Ostomy Awareness PSA videos with your local TV outlets. 

To kick-off the weekend events UOAA is partnering with the nonprofit Connecting Pieces for a Virtual Art Expression Class on Thursday, October 3, 2024 at 6:30 pm ET. Bring an ostomy pouch for a healing and fun creative exercise with whatever simple art supplies you have at home. All are welcome! 

On Ostomy Awareness Day on Saturday, October 5, you can also “Ask an Ostomate.” Our Ostomy Awareness Day Champion Kimberly will be hosting Q&A on UOAA’s Instagram @uoaa_ Live at Noon (11am CT).

We hope you’ll join UOAA and the ostomy community and make a difference too! Keep checking our Ostomy Awareness Day webpage for all the ways you can raise ostomy awareness on October 5, 2024.

PS. Awareness doesn’t just happen overnight or in one day. Learn more about raising ostomy awareness all year long within our “How to be an Ostomy Champion” toolkit.