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.

Access to Supplies with Medicare – The Never-Ending Story

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Words of Advice from UOAA’s Advocacy Committee Co-Chair Sue Mueller and Advocacy Manager Jeanine Gleba

UOAA often hears from the ostomy community about their struggles with getting quantities of ostomy supplies that are over the Medicare allowable limits. UOAA recognizes that the process to obtain supplies beyond the maximum amount is difficult to navigate and is not well understood.  

Medicare’s coverage of ostomy supplies is explained in their Local Coverage Determination (LCD) policy (A52487) and the allowable quantity limits are in LCD policy L33828.  According to their policy:

“The quantity of ostomy supplies needed by a beneficiary is determined primarily by the type of ostomy, its location, its construction, and the condition of the skin surface surrounding the stoma. There will be variation according to individual beneficiary need and their needs may vary over time. The actual quantity needed for a particular beneficiary may be more or less than the amount listed depending on the factors that affect the frequency of barrier and pouch change. 

The explanation for use of a greater quantity of supplies than the amounts listed must be clearly documented in the beneficiary’s medical record. If adequate documentation is not provided when requested, the excess quantities will be denied as not reasonable and necessary.”

According to our conversations with the Center for Medicare and Medicaid Services’ (CMS) billing contractors the quantities listed are reasonable and necessary for 80% of the patient population. The key for the small population who require quantities of supplies that exceed the usual maximum amount, is the information documented in the medical record that explains the need for the increased amount.  What are the factors that affect the greater frequency of changes for you? You must determine what documentation is missing from your medical record that medically necessitates having the greater quantity and then work with your medical professional to get the missing information included in your records and have your supplier submit them to Medicare. Please note that a letter from a nurse or doctor is not sufficient nor is just having it listed on your prescription. The justification of your need for additional supplies must be in your medical record. To learn more read UOAA’s blog “Know What’s In Your Medical Record”.

Any claim that goes over the allowable quantity is automatically denied in the Medicare billing system. It must then be appealed and the supplier has to show the documentation that proves medical necessity etc.  Appeal denial is so frequent that most suppliers no longer advance the increased amounts while waiting for an appeal decision and do not automatically file appeals. They only submit claims for the allowable limits and then the consumer has to pay out of pocket for any overages. 

Given the cumbersome frustrating process, before you deal with the hassle, UOAA suggests that you consider being re-evaluated by an ostomy nurse. Together you can evaluate why you need more supplies and determine if you need a different pouching system or can find another work around.  For example someone who uses 3-5 pouches per day may benefit from changing to a drainable pouch. If there isn’t an ostomy nurse in your local area, some facilities have telemedicine options or UOAA has a self-pay virtual ostomy clinic. There are many different types of supplies available to meet varied needs of ostomates and remedy the challenges that occur over the lifetime of an ostomy. A certified Wound Ostomy Continence (WOC) nurse is the ideal person to assess your situation and make recommendations. 

Increasing the number of pouches is not the solution for every problem. For example someone with a high-output stoma producing greater than 2L of liquid stool daily will want to first consider looking at their diet by working with a dietician and reading UOAA’s Eating with an Ostomy information. In some situations the solution may be adding medications or the timing of medication and eating.  This is why it is important to consult with your medical team or obtain a medical team that is responsive to your needs.

After you have consulted with your medical team and determined that you have a justifiable need that can be documented for more pouches, then pursue the Medicare appeal process with your supplier. Be prepared to purchase your additional supplies while you wait for the Medicare decision. Try to get your needed supplies at the lowest cost through discounts and free supplies. UOAA lists lower cost supply resources here.

If your appeal is denied, another resource is your local State Health Insurance Assistance Program (SHIP). They can assist you with correcting billing issues, and filing complaints and appeals. With your permission, SHIP will work with Medicare directly to help solve problems on your behalf. Find your local SHIP here.

The information we just discussed applies to people with traditional Medicare, if you have a Medicare Advantage plan you should follow the appeal procedure of your plan. You may also request a case manager who is an employee of the plan for assistance with the process. The decision-making process is different with Medicare Advantage plans. 

UOAA has been advocating on this issue for many years and we will continue to beat this drum with the Centers for Medicare and Medicaid Services (CMS) and their coverage jurisdiction Medical Directors until improvements are made.

 

Panniculectomy with stoma re-site allows ostomate to thrive

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Colleen Reddington’s Ostomy Story

I’m interested in sharing my story because I know I am lucky to have a smart nurse practitioner for a sister who has advocated for me and helps me advocate for myself. When I was researching and looking for patients who had experienced the same non-cosmetic abdominal plastic surgery as I had, I was only able to find one person in the US. It has been so life-changing for me and I think others may benefit from it as well.

I was diagnosed with stage IIa rectal cancer in August 2019 after my baseline screening colonoscopy at 50. I wasn’t surprised; I knew something wasn’t quite right and hadn’t been for a while. That fall I underwent radiation treatment and oral chemotherapy in preparation for Low Anterior Resection surgery in January 2020.

My tumor was removed along with about 80% of my rectum and 13 lymph nodes. I had clear margins and a temporary ileostomy. I had a distinctly unfortunate ileostomy situation – I also live with epilepsy and I wasn’t immediately aware that the ileostomy was spitting out most of my epilepsy meds before they could metabolize into my system. As a result, I had six tonic clonic seizures in six weeks (usually I have one or two a year) and I was a bit of a mess. Add in severe skin breakdown due to seal problems and there was no way I could start cleanup chemo. We decided to reverse the ileostomy earlier than expected, after just 8 weeks, at the end of March 2020.

This has been nothing short of life-changing. Prior to this surgery, I had so much difficulty getting a good seal that I dared not even shower with the appliance on.

I started what was supposed to be eight rounds of chemo in May. After two rounds I discovered I had a rectovaginal fistula. I opted to push through and deal with it later. As it was I had yet to regain bowel control and was dealing with many of the issues of LARS (Low Anterior Resection Syndrome).

I made it through four rounds of chemo before I was hospitalized for severe constipation. We decided I’d gotten all the good I was going to get from chemo and made plans to have surgery for a temporary colostomy in preparation for surgery to repair the rectovaginal fistula. The colostomy diverts everything, giving that area a break and hopefully ensuring greater success in repairing the fistula. Because the colostomy helped and in light of the incredibly high rate of recurrence for rectovaginal fistulas, I decided to keep it and pass on the fistula repair surgery.

But an interesting thing happened – when I got the colostomy my quality of life really improved! I no longer needed to wear a diaper. As time went on, I was still dealing with severe skin breakdown and problems getting a good seal. I have been overweight all my life and the fact my belly was soft with dips and valleys didn’t help. Additionally, because of carrying so much weight in my belly my colorectal surgeon was limited in the length of gut he had to work with and the stoma profile he was able to create.

My sister Madonna is a nurse practitioner and she suggested that I consult with a plastic surgeon to work with my colorectal surgeon. She thought perhaps they could do a panniculectomy and stoma re-site to give me a better landscape to work with. My colorectal surgeon had not done this before.

To make it even more unique, my sister was the charge nurse on the Trauma/ICU Step-down Unit when my colorectal surgeon was doing his residency over 20 years ago. She already had a plastic surgeon in mind (one she had sent her patients to) so when I approached my colorectal surgeon with this possible solution to my seal/skin issues he trusted her judgment and agreed to it.

Unfortunately, due to the pandemic my surgery was delayed twice. I had it in March 2022, almost a year after I initiated the process.

This has been nothing short of life-changing. Prior to this surgery, I had so much difficulty getting a good seal that I dared not even shower with the appliance on. I used so many extra products and changed it out at least twice a week. Now, I use just the flange and it lasts all week – even through being in the pool five days a week, some days twice; through showers after every pool session.

I do have a parastomal hernia that my colorectal surgeon minimally repaired while re-siting but getting rid of the excess belly fat has even helped with managing that. I feel like I have my life back, without the anxiety, stress, and physical pain of a low-profile stoma and inadequate seal can cause.

Prior to this surgery, my stoma was placed almost parallel to my belly button which added to the trouble. The panniculectomy removed 10 pounds of belly fat and my bellybutton too. The surgery is not done for cosmetic reasons so some of the steps a plastic surgeon will take in doing a tummy tuck (like preserving the bellybutton) are not done in a panniculectomy.

Even with the seal/skin problems, I’ve always been grateful for my colostomy. But now I feel like my colostomy is really doing what it’s meant to do – helping me be in control and do whatever I want to do.

I have the option to reverse my colostomy at any time, but I won’t – it essentially takes care of the rectovaginal fistula (which remains stable since getting the colostomy) and also gives me bowel control, which I never regained after my temporary ileostomy reversal. I realize it wasn’t a long time but with only 20% of my rectum remaining, I’m not confident I ever would.

In addition to my water aerobics routine (I go M – F every morning and again in the afternoon three or four days for a total of 8 – 9 hours per week).  I now shower also multiple times a day. I couldn’t do that before – I was only able to shower twice a week (when I changed my appliance) and resorted to sponge baths the rest of the time. Before, in addition to the flange and pouch, I used stoma powder, paste, and strips. Now I just need the flange and pouch and it gets me through a week. I’m saving money and creating less garbage. I’m also saving time. I used to have to let my flange “cure” for an hour before moving; now it takes about five minutes and I’m up and about.

Even with the seal/skin problems, I’ve always been grateful for my colostomy. But now I feel like my colostomy is really doing what it’s meant to do – helping me be in control and do whatever I want to do.

 

Our Ostomy Story- Chris and Alexa

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A couple’s story of Crohn’s disease, caregiving, and family

Our battle with Crohn’s disease began back in the spring of 2006, one week after we started dating in high school. I was 16, and my now husband, Chris, was 17. We first met each other on the tennis court a few years before this- a love we still share to this day. Being just 16 and surrounded by a relatively healthy family, I had never experienced the wrath of any chronic illness, personally or by association. Chris had also been a healthy kid, which is why he and his parents found his worsening symptoms to be so alarming. As teenagers, we didn’t yet realize he had a serious condition that would need managed for the rest of our lives.

His first hospitalization happened the week after he asked me to be his girlfriend. I remember being very surprised and clueless as to why he was in the hospital. He and I practiced tennis together almost every single day, and I hadn’t noticed that anything was wrong. (To fully appreciate this journey, you have to realize that Chris does not complain about anything. Ever. He works really hard and refuses to make excuses- a trait that is both very admirable and very frustrating). Little did I know, Chris had been suffering from severe abdominal cramping, bloody diarrhea, frequent bowel movements, and weight loss for a few months, eventually landing himself a stay in the hospital. After undergoing a full GI work-up including colonoscopy and biopsies, Chris was diagnosed with ulcerative colitis (UC). He was discharged from the hospital the day before my junior prom, and he still put on a tux and attended with a smile on his face. He had joked that he was going to make it to the prom even if he had to bring his IV pole with him.

For the next year, Chris was treated with a mix of immunosuppressant medications, steroids, and blood transfusions without any improvement.

I felt so out of control. Being a patient is tough, and being a caregiver is tough- both in very different ways.

That following spring, he was referred by his local GI specialist to Cleveland Clinic for another assessment. Seeing how severe his disease was even after aggressive conservative treatment, Cleveland recommended he undergo extensive surgery by having a total proctocolectomy with ileoanal anastomosis and creation of a J-pouch with a temporary diverting ileostomy to definitively treat his UC. Chris was only 18 years old.

Chris had that first operation, which was successful, and was thankfully able to have his ileostomy reversed 3 months later. He traveled the long 4 hours back home from Cleveland and made it just in time for my high school graduation. He healed well after that second surgery and was able to begin schooling for diesel mechanics while I went to college. We got engaged before I started grad school, and he got a job working as a diesel mechanic. We then got married at 22 and 23 years old, excited to be finishing up with school and moving back home to start our adult lives. Unfortunately, for the next couple of years, he continued to have a slow progression of the same symptoms he was experiencing before his J-pouch surgery, meaning more severe abdominal cramping, bloody diarrhea, very frequent bowel movements, and weight loss. In addition to these symptoms, he developed a new complication: perianal fistulas. These symptoms persisted, leading to another scope and biopsies confirming a new diagnosis of Crohn’s disease.

Following this new diagnosis we were referred back to Cleveland Clinic for more treatment, which included multiple new medications, steroids, and transfusions. While Chris’s J-pouch surgery would have been somewhat curative for ulcerative colitis, it made it harder to effectively manage his Crohn’s. Chris continued to have this active disease in a surgically constructed reservoir (i.e. the J-pouch) making his condition, and the accompanying complications, very difficult to treat. No matter what medications he tried or how high the dosage, his health continued to deteriorate.

Over the next several years, Chris’s body went on to form a complex network of fistulas, which required multiple procedures for seton placement. He had tried hyperbaric oxygen therapy to help with the healing of his external fistulas and wounds. Unfortunately this treatment did not work.

Our kids have also been involved in everything concerning Chris’s ostomy, particularly in the beginning when it was new.

He experienced constant leakage and stool draining from multiple holes. This had become a nuisance for Chris. He also developed strictures at the inlet of the J- pouch which then resulted in endless ileoscopies for dilation to prevent obstruction. He had spontaneous bleeding due to the inflamed and ulcerated state of his intestines. There had been instances where Chris would start hemorrhaging a few hours after having a scheduled ileoscopy, causing us to rush to the ER in the middle of the night for an emergency ileoscopy to stop the bleeding. This happened on a couple of different occasions, leading to more hospital admissions and ICU stays for low hemoglobin and low blood pressure.

I started to panic with every procedure, wondering if everything would go routinely or if we would be surprised with unexpected problems.

By this time, we were traveling to Cleveland every 2-3 months for scopes and appointments, which became extremely mentally and physically exhausting for both of us. While I realize I can never begin to understand the excruciating pain Chris was experiencing, I was sort of in my own kind of emotional pain in seeing the person I love the most in this world suffer from such an awful disease. While Chris remained totally collected and level headed with each added layer of dread, I was having a hard time sitting back and watching it all happen, knowing there was absolutely nothing I could do but hold his hand in this never-ending nightmare.

I felt so out of control. Being a patient is tough, and being a caregiver is tough- both in very different ways. Luckily, our bond as a couple was already very strong, and we became more solid with each piece of bad news. It had gotten to the point where we would almost laugh about things, because what else was there to do? If we didn’t laugh, we’d cry, and we could not start that.

Something we were blessed with (other than our awesome marriage and a side of humor) was the love of an extremely supportive family. It was very difficult to navigate Chris’s condition as it was, but we had also been going through this while starting a family of our own and both working full time. Not to mention Chris was working a manual labor job while enduring all this misery.. can you imagine? My parents, brother, and sister-in-law stepped in to take care of us, our two small kids, and two pups whenever we needed them. They were available at a moment’s notice whether it was to watch our kids while we were in Cleveland or to help with things around the house that we just physically couldn’t get around to doing. It truly took a village to make sure everything and everyone was cared for, and we can’t even begin to express the love and appreciation we have for them. They always showed up, and having that safety net of support was so valuable, especially during that time in our lives.

Since Chris had tried and failed countless conservative treatments over the course of several years, it was then recommended he have surgery for a diverting ileostomy so that his J-pouch and fistulas could have a chance to rest and heal. Chris was not exactly thrilled with the thought of having an ileostomy, but he had run out of treatment options without any promising new therapies on the horizon. Knowing that an ileostomy was going to be a potential end result based on previous discussions with his care team, Chris was able to process his thoughts and emotions surrounding the upcoming surgery. Honestly, I think having the time to mentally prepare for such a surgery was a huge benefit in how we were all able to cope moving forward.

He had the surgery for a diverting ileostomy in January of 2020, just before the pandemic. We had hoped that he would improve with this surgical intervention, but his fistulas continued throughout that following year. He also developed a pyoderma, which is a large and painful ulcer, on his abdomen right beside his new stoma. As a result of this and the relentless fistulas and strictures, his doctors recommended he have another surgery, a major surgery, to hopefully improve his quality of life. So, one year after receiving his diverting ileostomy, Chris had an abdominoperineal resection (APR) operation. In this long, 8 hour surgery, he had his J-pouch, anus, and perianal fistulas removed. This surgery also meant that his ileostomy would be permanent without the option of ever reversing it. It would be a part of him for the rest of his life.

Our focus is on making something positive out of something that could easily seem like a burden or embarrassment.

It has now been 3 years since his APR surgery and permanent ileostomy, and Chris is healthier than ever (Shout out to the wonderful surgeons and specialists at Cleveland Clinic! We’re so very thankful for you). While the initial thought of living with an ostomy seemed daunting for Chris and for me, we have come to really appreciate everything it’s done for us. Cleveland visits are now just once a year instead of every 3 months, and Chris is only on one medication for therapeutic management. His ostomy is functioning very well and hasn’t given him any problems. Chris can change his ostomy appliance so quickly that it doesn’t even seem like an inconvenience.

Our kids have also been involved in everything concerning Chris’s ostomy, particularly in the beginning when it was new. They have grown up seeing him do bag changes and have loved helping him get all of his supplies ready, and we welcome their questions with age appropriate answers. They were too young to remember how sick their dad was, but we don’t dwell on that part.

Our focus is on making something positive out of something that could easily seem like a burden or embarrassment. They are now 9 and 6 years old and are not ashamed that their dad wears a bag on his belly. When our daughter was in second grade, she actually took it upon herself to read “Awesome Ollie” to her class so she could educate her friends on what an ostomy is (this is an AMAZING kid friendly book we had used to prepare our kids for Chris’s ostomy surgery).

We were very impressed with her confidence and maturity to be able to share this information with a class full of kids. It was all her idea.

We are so grateful for this ostomy and the freedom it has given us. It’s like we have a new lease on life! Chris’s positive attitude throughout this entire ordeal has been such a blessing as well. He has never let his disease dictate his life, and there is so much to be said about that. Chris will gladly talk about his experiences if it means helping someone that is struggling with a similar situation, but he is not one to draw attention to himself. He never brings up how tough or terrible that part of his past was. He is such a wonderful example for our two kids, and I am proud that they will grow up seeing how great life can be despite difficult and less than optimal situations. Having an ostomy or a spouse with an ostomy is certainly an adjustment, but it doesn’t have to be a negative thing. It really is all in your mindset- just ask Chris! Even though Crohn’s is a disease that will never go away, the ostomy has been a life saver.

This is our new normal, and we are so blessed we get to experience it.

Where Should I Purchase my Ostomy Products?

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Quick Reference Guide for Ordering Supplies and Insurance Reimbursement

• Ostomy supplies are special products and may not be available at your local drugstore.
• Contact your insurance provider to understand what your insurance plan covers and pays for ostomy supplies, and where you can purchase and order supplies (usually through a supplier or retailer).
• Connect with a trusted retail supplier for help understanding your insurance allowables. With your permission, they can even contact your insurance on your behalf.
• Do you need help finding a supplier for your ostomy products? Call the me+ team to learn more about your options (1-800-422-8811).

Still not sure which ostomy products to buy?

With me+™, you never have to figure it out alone.

Navigating and maximizing your health insurance, finding a retailer, and feeling confident in your ostomy supply purchases may feel overwhelming. The me+ support team is available so that you don’t have to figure it out alone.

You have the right to choose the Retail Supplier that best meets YOUR needs.

Convatec works with a group of Preferred Retail Suppliers to provide you with excellent customer service and dependable supply delivery. Our Preferred Retail Suppliers will:

  • Help you manage product orders in line with your insurance
  • Facilitate your insurance billing process to ensure you get the proper reimbursement for Medicare, Medicaid or private insurance
  • Help you select the right products to suit your personal needs
  • Ship your products straight to your home in discreet packaging
  • Send you timely reorder reminders
  • Protect your privacy in accordance with U.S. HIPAA guidelines

To learn more about Preferred Retail Suppliers that work with your insurance, contact our me+ support team at 1-800-422-8811, cic@convatec.com or fill out this form.

My Ostomy Journey App

Fit is so important, especially when it comes to your body and the ostomy products you’re using.

We know that there is no one-size-fits-all product that works for everybody or every stoma. Download the My Ostomy Journey app to discover and sample products to fit your body by answering just a few simple questions. It’s free to download and works on either a phone or tablet. Download now to get started today!

The reimbursement information provided by Convatec is intended to provide general information relevant to coding and reimbursement of Convatec’s products only. Coverage and payment policies for the same insurer can vary from one region to another and may change from time to time because of ongoing changes in government and insurance industry rules and regulations. Therefore, please confirm HCPCS Codes with your local DME-MAC, private insurer, or Medicaid agency before processing claims. Convatec does not guarantee coverage or payment of its products listed herein.

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.

Ostomy Advocate Makes a Splash in Commercial

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Advertising students at BYU put a spotlight on ostomy awareness in creative commercial. 

The students could focus on anything they wanted for a final advertising project at Brigham Young University in Utah, but they knew they wanted it to be meaningful. After spending days thinking about a direction for the project Art Director Jane Reese and Copywriter Nate Nielson made a connection that they both had family members with ostomies. “We didn’t know until we were much older because they were very private about it and it felt like some kind of “secret”. That’s when we came up with the idea of “uncovering” your story,” says Nielson of the ad they conceived with the brand Hanes in mind.

Jane Reese has had eight family members with a colostomy. “A lot of people do not know what they are and we wanted to spread awareness and help do whatever we could,” Reese said during a break in the filming.

“We wanted the ad to highlight the emotion that our family members felt and at the same time illustrate that it’s normal to have medical conditions and no one should feel embarrassed or shamed by them,” Nielson says.

When Nate Hadlock, who is a member of UOAA’s Patient Advisory Board learned about the project he jumped at the opportunity to be involved.

“Ostomies often change a lot about a person’s life and how they view themselves, so seeing a beautiful video like this, along with the overwhelmingly positive response to it, can give ostomates new courage and confidence,” Hadlock believes.

The beautifully produced film project features Hadlock and several other ostomates living life to the fullest. Hadlock is seen in the commercial diving and gliding through the water swimming while wearing a Stealthbelt cover over his ostomy pouch. The image itself is powerful because of the hesitancy some ostomates may experience because of misinformation about swimming with an ostomy.

“I am extremely grateful that I was able to be a part of this project. The actual film day of making the ad was so much fun! The students could not have been more professional or treated me better. It was a special moment in my life! ” Hadlock says.

Hanes-Uncover Your Story from jane reese on Vimeo.

Nielson credits getting Hadlock on board with encouraging other people to be featured in the project. We wanted to show people of all backgrounds, because these conditions, can affect anybody,” Nielson says.

A voiceover of the Maya Angelou Poem ‘One Human Family’ is featured in the ad and reminds us that we are “more alike than we are unalike.”

“Though we all have different marks, scars, and stories, underneath we are all human. Everyone deserves to be proud of who they are,” Reese said of the project on a post on LinkedIn.

Hadlock feels that the message of the ad itself and the project as a whole can really help with ostomy awareness. “Ostomates need to see that they belong in this world as much as anyone else. If I had seen this ad 14 years ago, when I received my ileostomy, it would have changed my entire outlook on ostomy life and what I was going through,” he says.

In a YouTube video Hadlock shares a special behind-the-scenes look at the filming and more reflections on the project in the context of the often negative portrayals of ostomies on TV and in popular culture.

“Ostomies often change a lot about a person’s life and how they view themselves, so seeing a beautiful video like this, along with the overwhelmingly positive response to it, can give ostomates new courage and confidence,” Hadlock believes.

I have already been contacted by multiple people about how this “ad” has legitimately helped them, or somebody they know! Hopefully, ostomates who see this will realize, even if only a little bit more, that they are beautiful, capable, worthy of love, and definitely not alone.”

Other students who worked on the film came away with a new understanding of the ostomy community.

“I had my eyes opened to a whole other world- a world that so many around me live in daily, but that I had no idea of its existence. I was able to meet amazing people who shared with us their journey with an ostomy. If you are struggling with shame, embarrassment or any other thing because of your ostomy, know this: you are SO strong and you are capable of anything you put your mind to! “ says director Taylor Steadman.

Though the company Hanes was not involved in this project the ad has the look and feel of a full-scale professional production and is a credit to the talents of the student team.

“We wanted the ad to highlight the emotion that our family members felt and at the same time illustrate that it’s normal to have medical conditions and no one should feel embarrassed or shamed by them,” Nielson says.

“I’m very grateful for the opportunity to work on such an important project, and I hope that my cinematic choices made in this commercial helped capture the experiences and feelings of these incredible individuals,” said Spencer Nelson, Director of Photography.

Hadlock feels that helping with this project was a chance to do something uniquely meaningful. “I spent decades not wanting to ask for help or talk about the medical side of my life with anyone. However, becoming more active in this community has taught me so much and truly changed my life. I have also seen the tangible and intangible ways that my own advocacy can help others.”

That’s why I’m grateful to be involved in advocacy efforts with UOAA and why I plan to be a part of many more projects like this video in the future,” says Hadlock.

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. 

Steve Hubbard’s Ostomy and Crohn’s Story

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I’m 75 years old and this is my 56th year of living with Crohn’s disease and an ileostomy.

I first started getting sick at 18 years old in 1967 right after graduating from high school. I was starting to get weak all the time, losing weight, couldn’t eat without getting sick and there was blood in my stool. My parents took me to the University of Stanford Medical Center.

The doctors there weren’t sure what was causing me to be so sick. I was down to around 65 lbs and so weak. They thought it was ulcerative colitis and they began treating it as such. When I wasn’t improving they called in a Colitis and Crohn’s specialist that was visiting the hospital from Germany. He diagnosed it as Crohn’s disease and started treatment right away by injecting a lot of steroids into me to help me gain the weight I needed for the first operation. Because I was so young they tried removing small sections of my colon at a time hoping they wouldn’t have to fit me with an ostomy.

The flange was made was solid rubber and it came with see-through plastic bags. The ostomy equipment nowadays is truly a godsend.

(Steve with his two daughters at his grandson’s wedding)

I had to stay in the hospital for around three months after each operation but after four major surgeries within two years time, I was finally fitted with my ostomy. After receiving my ostomy I was devastated because I was an athlete in school and didn’t know if I’d be ok to play sports or other things I loved to do again.

In the sixties having an ostomy was something kind of new and the only ostomy equipment we could find required a drive that was over two hours away. The flange was made was solid rubber and it came with see-through plastic bags. The ostomy equipment nowadays is truly a godsend.

By 1970, I had recuperated enough to get married. In 1972 we moved to San Diego after my first child was born. Then in 1973, I began to get very,very sick. With input from the WOCN specialist, they realized that they had to reconstruct and move my ileostomy to a different location on my lower belly.

After I woke up from the operation there was a priest next to my bed. He told me that he was giving me my Last Rites because I had passed away during the operation.

My mission has always been to never give up on anything and not use my ostomy as an excuse.

I recuperated and then my second child was born in 1974. After everything that I’ve lived through, here I am at 75 with two kids, two grandkids and two great-grandkids.

I played so many different sports with my ostomy including water skiing, kayaking and tennis. My mission has always been to never give up on anything and not use my ostomy as an excuse.

I hope this inspires people with an ostomy to never give up so you too can live a full life. I have no regrets. Ostomies are life-savers.

Do you speak stoma?

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A New Guide aims to help you find the right words to talk about your ostomy

By Joga Ivatury, M.D., MHA

The Speaking Stoma Guide is the first health communication guide for people with ostomies. This work was coproduced through collaboration with ostomates worldwide, UOAA, clinical experts, and health communication experts. This guide is freely available here on UOAA’s website, encompassing 11 communication topics areas including managing pouch leaks, communicating with friends and family, and intimacy.

This work has been inspired by our experience working with ostomates. We recognize that talking about your ostomy will not always be easy. We created the Speaking Stoma Guide to help. We hope this guide gives you an idea of things you could say if you are ever in similar situations and ways to manage challenging social situations that may arise. Each section has a big topic and has different situations that you may experience. In the next section, we will provide a snapshot of situations inspired by real people with ostomies.

Leaks
In this section, we have suggestions for what you might say to help manage the situation based on how much you want to disclose about having an ostomy. These phrases were produced directly from things ostomates told us. For people who did not want to disclose anything about having an ostomy (low disclosure), a person may say, “Can you show me how to get to the bathroom?” For high disclosure, a person may say, “Can you show me how to get to the restroom? My ostomy pouch has leaked and I need to clean up. Would you be able to find me an extra set of clothes? I really appreciate it!” Each section has several suggestions like this.

Talking About Food
With an ostomy, some people have limitations on the food that they can eat. Some ostomates expressed embarrassment when they couldn’t eat the same food everyone else is eating. It’s hard to say “no” whenever someone offers you food. One participant noted that he once told a host on behalf of his wife: “Please don’t take offense. She doesn’t eat these things. It’s not your cooking.” For higher disclosure, a person may say “Thank you so much for inviting me. After my surgery I’m still figuring out the foods that make me feel best, so I ate before I came. Everything looks delicious!” In general, there are many people with and without ostomies that have dietary restrictions.

Public Restrooms
What do you do when you need to use a public restroom to care for your ostomy and there is a long line! For low disclosure, you may consider saying: “Excuse me, I have an emergency and need to get to a restroom right now.” This does not reveal anything to strangers except the urgent need. For higher disclosure, you may reveal the presence of your ostomy and the rapid need for its care. People in line can be helpful too. One of our participants recalls how a stranger helped her get to the front of the line during a pouch leak.

Talking to Friends and Family
Time with friends and family are vital to everyone. How do you address having an ostomy with them? Some of our participants suggested having a “code name” for the ostomy that they can use with their family and friends to talk it in public. Unfortunately, some people have disparaging comments or jokes about ostomies once they know about it. Some ostomates use humor back to deflect the situation. It is also ok to say: “I am not really comfortable joking about my ostomy like that, but I am glad you will be willing to help if I need it. I really appreciate it.”

Noises
Noises happen! People with ostomies have no control of when they happen. In the beginning, our participants noted that they felt awkward about the noises their ostomies made. It helped people to remember that no one knows that the noises came from the ostomy. It is ok to say nothing (low disclosure). It is also ok to say: “Excuse me, I have an ostomy pouch and sometimes it makes noises” (medium disclosure).

Sex and Intimacy
Some people are not sure when or how to tell a romantic partner about their ostomy. There is no right or wrong time. Some people may choose to tell someone immediately, while other people might wait to tell the person until they know the person better. Your comfort is what is most important. We have suggestions and real-life testimonies in the guide related to speaking about sex and intimacy while having an ostomy.

Talking to Clinicians
We also go through ways to manage different levels of challenging social situations or what we term as “difficulty.” For example, you are in a clinical visit with a new physician who is not familiar with ostomies. Our participants universally encountered this situation. They noted that they often are the most knowledgeable person about ostomies in a clinical visit. In the guide we provide some easy to remember suggestions about how to manage this situation and others.

What’s Next?
We are scientists and this work does not end here. We are actively working to obtain funding to test this guide to see if it makes a difference for people with ostomies. We have also translated the guide into Spanish and are pilot testing it with people who prefer to speak in Spanish. Our experiences with major grant organizations, however, has been underwhelming to say the least. Some reviewers talk about “osteotomies” (surgically created bone holes) instead of ostomies demonstrating their complete lack of basic understanding. Other reviewers assumed that existing information already contained a wealth of communication-related information for ostomates. Despite these, we are undeterred and will keep pushing forward for funding. We would appreciate any support for this work from anyone including the ostomy community, ostomy pouch manufacturers, and local/state health agencies to keep the momentum going! We would also appreciate your feedback on the Speaking Stoma Guide. Please feel free to email me at jivatury@austin.utexas.edu.

Joga Ivatury, M.D., MHA, is an associate professor of surgery Dell Medical School and the inaugural chief of colon and rectal surgery at UT Health Austin. The Speaking Stoma Project was funded through the Communication for Health, Empathy, and Resilience Grant Program and created in partnership with Dell Medical School and the Center for Health Communication at The University of Texas at Austin.

Why Larry David’s “Colostomy Bag” Curb episode is making me speak out about my ostomy after 48 years

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By Robin Bergstein Berman

The latest episode of Larry David’s, Curb Your Enthusiasm was called “The Colostomy Bag” and during an attempt to be humorous, his usually (awkward and despicable character) made disparaging comments relating to ostomates. At least it opened up room for discussion… It’s the first time that I posted on my Facebook page about my one-and-done Ileostomy surgery 48 years ago and I received nothing but words of support. I shared below why I found the episode harmful:

“Being an ostomate does not define me.” Says Robin, 63, and has had her ileostomy for 48 years, finding health and a full life after ulcerative colitis.

This is too important not to address so I’m about to “out” myself for those who do not know. Larry David’s, Curb Your Enthusiasm episode that aired tonight was called “The Colostomy Bag” and it was harmful for a few reasons. I’m able to laugh at myself but this was not funny mostly because it passed along inaccurate information and promoted public stigmas that could cost lives. Those who desperately need a life-saving surgery (for bowel diseases, cancers and more), often put it off far too long due to inaccurate public opinion including that of too many doctors.

There were three primary comments that were said, I want to address about the episode while giving only a glimpse of my journey. First of all, not all who have an ostomy have a colostomy and therefore do not wear ”Colostomy Bags”. Larry kept saying colostomy as if it encompassed all ostomies… it doesn’t.

Secondly, having an ostomy is not the worst thing that anyone could possibly have. He made it sound as if it is. It’s life-saving and has given me personally 48 more years of life to date that I wouldn’t have had without the complete colectomy/Ileostomy I was given in a nine hour surgery in 1975. I would not be here without it since I was bleeding to death and not able to recover after given the maximum doses of steroids for an extended period of time. Polyps, the breeding grounds for cancer cells were present and multiple were seen when my entire colon and rectum were removed at 15 years old. The pain I endured prior to surgery was unfathomable and I won’t here expand on all of what I experienced. I had the most severe chronic ulcerative colitis, spending weeks and months at a time in the hospital from 11 to 15 years old.

Robin with her two, now adult sons, whom she carried to term and had by emergency c-section after her ileostomy surgery.

Back to the episode; there is no such thing as a “shit in the bag look” for anyone thinking there is, like Larry. It was only slightly humorous in the context, but for someone facing this surgery and not knowing, there is no facial indications that we wear an appliance/pouch/bag. Now when he felt guilty about his comment to the car salesmen and wondered if he could gift a Louie Vitton Illeostomy Bag, that I’d like !!!…lol THIS was funny when Larry brought it up.

While they did say the car smelled like smoking, they alluded to it smelling like the man’s ostomy bag which is also not a “thing”. Popular public thinking is that ostomates smell, are unattractive, unappealing, not sexy or sexual and should be pitied. This too is not true. Within months after my surgery, I was at the beach away with my friend and her family, continued my relationship with my first boyfriend and went onto have others, didn’t miss a beat with school and countless other activities which were extensive and then went onto college away two years after my surgery. I’ve lived a full, active, useful life, carried both of our sons to term, working primarily but not exclusively in fragrance and cosmetics and certainly do not smell bad being told my entire life that I smell good (lol). In fact the first thing that attracted my husband to me was how I smelled at a bar after fragrance modeling all day.

I wear almost everything I want with some exceptions and am fashionable according to most. I’ve heard from too many that someone would rather be dead than to wear an ostomy bag. It’s the most absurd thing I’ve ever heard all caused by antiquated public opinion that is not valid and what this last episode of Larry David continues to promote.

I was going to wait until my 50-year anniversary with my ileostomy to reach out and make myself available but this prompted me to do it sooner.

Without fail when TV, even medical dramas, present ostomy surgery and the wearing of an appliance, they present it unfairly, wrong and impose additional stigmas. Don’t misinterpret me since adjusting to it sucks and there are challenges but it’s totally doable and makes a person no less the person they were in any way other than making them hopefully healthier.

If any one of you are facing this now or in the future, I am more than willing to help you or anyone you care about, to get through and adjust by listening, empathizing and giving you the tips and tricks I learned from a lifetime, 48 years, through all stages and phases of life.

Robin and her husband of 34 years.

It’s so much easier to find info today with social media than when I learned to adjust on my own without an ostomy, now a community is a click of a phone away and with laser surgery lessening the more invasive total cutting my body went through.

I was triggered tonight by the episode knowing how people are discouraged by doctors and the public’s misconceptions, I just had to address it not for me but for others. Ostomates are all ages and sexes and all walks of life including some professional athletes. Please let me know if you have any questions but mostly if you or a loved one are facing this life saving surgery, I’d be glad to help.If anyone would like to share my post, I’ll be glad to make it shareable by allowing public access. Let me know.

I was going to wait until my 50-year anniversary with my ileostomy to reach out and make myself available but this prompted me to do it sooner. I help where I can in the support groups and over 48 years ago tried forming a youth group here in Pittsburgh for ostomates, spoke to auditoriums full of high schoolers at various schools trying to discuss differences and acceptance for all and was always received well.  I went on a local talk show regarding my surgery back in 1975. Being an ostomate does not define me so I spend little time discussing it unless I can be of help or it’s in a relevant conversation, which it is this week!

Editors note: The humor of the Larry character in Curb Your Enthusiasm is often built around his selfish and ignorant views. In past episodes with characters who are disabled or have a disease, those characters are usually used to help magnify his faults. This episode did not include an ostomate character just the perception of what one would be like and what life would be like with one. The opportunity for awareness, such as what Michael J Fox brought to Parkinson’s in his past episodes, was missed. 

Want to get a more positive ostomy awareness message on TV and social media? Share UOAA’s Ostomy Public Service Announcement.