Lori’s story: Living with Crohn’s Disease, Ostomy, and Short Bowel Syndrome

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Having lived with Crohn’s disease for 43 years, and an ostomy for 35, Lori Plung had known it was possible she would go on to develop Short Bowel Syndrome (SBS). Eight years ago, following her fifth surgery, SBS and the need for intravenous nutrition (TPN) became a reality.

In recognition of Crohn’s and Colitis Awareness Week (1-7 December 2023), Lori generously shares some of her experiences, and the advice she’d give to anyone grappling with complexities of inflammatory bowel disease (IBD) who may be facing the possibility of developing SBS as a result of surgical procedures to treat their disease.

Learning to live with Crohn’s and an ostomy

When I was diagnosed with Crohn’s disease at 16 years old, the thought of having to have “a bag” was, quite frankly, terrifying. But at the age of 24, the disease overtook my entire being. I had debilitating pain, cramps, bloody diarrhea and urgency, and I was up multiple times a night – I often couldn’t leave my house for fear of an accident. I was too sick to eat and had no energy.

Eventually I needed an emergency proctocolectomy. My colon, rectum, and terminal ileum were removed, and replaced with a permanent ileostomy. I had been so sick before surgery that I was very weak, and recovery was incredibly hard.

But what surprised me most? The feeling of relief. I was free! As I recovered from the procedure, my pain and symptoms were gone. Suddenly, I could eat what I wanted, and I started feeling back to myself. My quality of life improved and my stoma became my new best friend.

Though I was grateful for this new lease on life, it came with challenges. The Crohn’s disease returned a year later in my small bowel, presenting as multiple strictures and obstructions. I was now navigating flares with an ostomy, often experiencing high output which required supplemental outpatient intravenous hydration, magnesium, and potassium to get my levels back to normal.

What is Short Bowel Syndrome?

Five more surgeries followed in the span of 32 years, with the intention of saving as much bowel as possible. I heard mumbles of avoiding “short gut”, but nobody sat down and explained what that meant. I wish I’d known more about it sooner.

Short gut, also known as Short Bowel Syndrome (SBS), occurs when your bowel doesn’t have enough length to absorb the nutrition and hydration your body needs on its own. In most cases, it happens as a result of major surgical resection of the small intestine, necessitated by conditions like Crohn’s and colitis. For a patient like me, with only 69cm of intestine remaining, intravenous nutrition and hydration support is needed to keep my body functioning properly. This is known as Total Parenteral Nutrition (TPN).

Coming to terms with a new normal

TPN nourishes my body with the nutrients it’s not capable of absorbing on its own. It’s delivered via a Hickman catheter in the upper left part of my chest, infusing through a pump stored in a backpack while I sleep.

Coming to terms with that wasn’t easy for me. I’d been on TPN before surgery to increase my nutritional status, and I assumed I would be off it at some point during my recovery. But with the SBS diagnosis, that was unlikely to happen. I had a very hard time accepting the fact that I would have to live with a central line for the rest of my life.

Therapy has been invaluable in helping me learn how to cope and accept. I learned that I can dislike having to hook into my TPN each night, and at the same time, I can be grateful for it, and for the life it allows me to lead. These two truths can co-exist together – and that way of thinking has helped me to accept my new normal.

Goals

I’m also hopeful that I can reduce my reliance on TPN over time. For patients like me, the goal of SBS management is to increase valuable time off TPN through intestinal rehabilitation. This uses approaches including diet, medications, and surgery to help the remaining GI tract work better so that it can absorb more nutrients from eating. Not all SBS patients are the same, so it’s important to understand each individual’s needs and explore the best options.

It’s also crucial to have the support of a medical team that specializes in IBD and intestinal rehab. Since my SBS diagnosis, I was careful to choose a multidisciplinary team at an academic medical center that is part of the Gastroenterology Rehabilitation and Transplant Program. My physician is an IBD specialist and the director of the nutrition support program, and I’ve worked closely with a dietitian who specializes in treating patients with SBS. Their support has been life-changing.

Need to Know

Having spent over 40 years navigating the complex journey from Crohn’s to SBS, I am now an advocate for patients with inflammatory bowel disease. Here are some of the most important things I think patients should know when managing their own condition:

  • Preserving Bowel
    As a Crohn’s patient, it’s important to be aware of potential complications of surgery, and the possibility that losing large sections of small bowel can lead to SBS. Make sure to discuss this with your healthcare team before surgery, and wherever possible, look for ways of minimizing bowel loss.
  • Learn About SBS
    Being educated, and aware of the resources available to you, gives you the opportunity to have important discussions with your medical team and seek out the best possible care. You can access resources, support, and education through UOAA and other organizations such as the Oley Foundation, IFFGD, Transplant Unwrapped, The Crohn’s and Colitis Foundation, and The Short Bowel Syndrome Foundation
  • Find the Right Team
    Seek out a medical team with expertise in SBS and nutrition to offer you the right support throughout your journey. Ideally, this should be at a center that offers intestinal rehabilitation with a multidisciplinary team. If this isn’t possible, find out if your medical team is willing to consult with such a center.
  • Nutrition Matters
    Pay close attention to your diet. Some foods may lead to increased ostomy output or difficulties in digestion. Staying hydrated and making wise food choices are essential. Learn what works best for your specific condition and consult an ostomy nurse and an IBD/SBS dietitian for guidance.
  • Advocate for yourself
    Being comfortable advocating for yourself does not mean being confrontational. It’s about being heard, understood, and well cared for without feeling dismissed. Open communication with your healthcare team is important, especially when shared decision-making comes into play.
  • Resilience
    Day to day life with these diseases can be hard. Sometimes we have to take things day by day, hour by hour, and even minute by minute to get through the tough times. I believe that every patient is resilient. Sometimes, it’s buried, and we just need a bit of extra support to help it come to the surface.
  • Seek support
    Actively engage with your IBD community. Bowel diseases are very private and isolating, so being surrounded by others who understand firsthand what you are experiencing is very powerful. Family and friends can be supportive, but they can only empathize. Speaking with actual patients who have “been there, done that” is extremely helpful and comforting!
  • Be kind to yourself.
    Self-compassion and self-care are very important when living with the day-to-day challenges of these diseases. For example, fatigue is one of the biggest symptoms of IBD. Giving ourselves permission to rest can be hard for some of us – me included! That’s where self-care and self-compassion come in.
  • Be positive
    Lastly, it is absolutely and positively possible to live a very happy and productive life while living with conditions like Crohn’s disease and SBS.

 

[Article written by Lori Plung with support from UOAA digital sponsor, VectivBio.]

VectivBio is a global biotechnology company committed to improving the lives of people with short bowel syndrome, who rely on parenteral support (IV nutrition and/or IV hydration). VectivBio is part of Ironwood Pharmaceuticals Inc., a leading global gastrointestinal (GI) healthcare company on a mission to advance the treatment of GI diseases and redefine the standard of care for GI patients. To learn more, visit VectivBio.com.

AN OSTOMY ARMY STORY

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By Tony Plonner

Editor’s Note: UOAA is proud to recognize Veterans and supports all those now living with an ostomy or continent diversion. 

As a 20-year-old, way back in 1972, entering Army basic training was a daunting experience, the “fear of the unknown” had my mind reeling of what could happen. My approach was to take the challenge one day at a time, one hour at a time, or if necessary, one minute at a time.

We adopted many phrases to get us through the many challenges of this new environment: “Can Do!”, “When the going gets tough the tough get going” and when all else failed, “Yes Drill Sergeant!’ and we’d jump into the challenge at hand. This experience taught us we could surmount obstacles we’d never dreamed of.  Unknowingly, our training prepared us for many of life’s challenges both in and out of the military. For me, progressions to Military Police School and Officer Candidate School strengthened my confidence and allowed me to take on challenges in both the military and civilian worlds.

One basic premise I learned was to never quit.  I learned the quitter never knows how close they were to success. Whatever the challenge, you keep moving and keep fighting.

A little over thirty years ago, I was diagnosed with prostate cancer.  Surgery and radiation followed.  I kept a positive outlook and survived the experience.  Unfortunately, a couple of years ago, I was diagnosed with bladder cancer.  I was told there was a chance the radiation many years before may have led to this cancer.  As it was muscle invasive, and with a history of radiation, all the doctors involved agreed the bladder would have to go.  I had faith in my team and after a round of chemotherapy, I had urostomy surgery at the University of Miami Medical Center on March 14, 2022.

My best advice for those about to undergo or have recently had urostomy surgery for bladder cancer is to keep the “Can Do” attitude and continue with your life’s goals. You’ll be amazed how far you’ll go.

Having been told the result of the surgery would result in an ostomy, I researched as much as possible to learn about the side effects and the changes to my lifestyle I’d encounter. A pleasant result of this research was finding the tremendous support network available.  I learned about the Bladder Cancer Advocacy Network (BCAN) and through my old army buddy, Justin Blum, United Ostomy Associations of America (UOAA).

Tony Plonner, pictured riding the Florida Keys Scenic Highway has continued an active lifestyle after urostomy surgery for bladder cancer.

Reading case stories, with a bit of skepticism I’ll admit, I learned of the many people who have not only survived but thrived through this experience.  Along with my experience of tackling the unknown in the Army, and the great support of family and friends, these stories only bolstered my faith that we’d lick this cancer and continue with life.

My doctors regaled me with stories of ostomy patients maintaining their lifestyles, skydiving, running, golfing and barely missing a beat after surgery.  Combined with the experiences of ostomates I’d read about, was confident I’d go through the surgery and, despite new limitations expected on my lifestyle, I’d take the hill and keep on moving.

Looking back over the last year and a half I am astonished at how smooth, if that is the right word, the transition has been.  Beginning with the support of the team at the surgery center, who trained me in the care of my ostomy, I followed orders like a good soldier, paid attention to their instruction and thankfully have made the transition to ostomate.

My biggest concerns, changes to my lifestyle, were pretty much unfounded.  I am an avid golfer, road bicyclist, and generally an active person.  I was concerned about how my ostomy bag would affect these pursuits.  The answer is hardly. I wondered how I’d be able to go on bike rides of 15 or 20 miles in tight bike shorts and was pleasantly surprised to find it pretty comfortable. Also, it is easy to tell when I need to pull over and go to the bathroom.  Spandex bike shorts don’t provide much wiggle room!

Golfing also has been unaffected by my ostomy. I was worried about the twisting during the golf swing and any stress it would put on my appliance.  It hasn’t been an issue.  Now, if I could only lower my handicap…

My best advice for those about to undergo or have recently had urostomy surgery for bladder cancer is to keep the “Can Do” attitude and continue with your life’s goals. You’ll be amazed how far you’ll go.

OPEN ENROLLMENT – YOUR CHOICES ARE IMPORTANT!

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Jeanine Gleba, UOAA Advocacy Manager
Sue Mueller, RN, BSN and UOAA Advocacy Committee Co-Chair

The Medicare Open Enrollment Period occurs each year from Oct. 15 to Dec. 7, and this gives consumers the chance to review and make changes to their current Medicare coverage. Many employers also have open enrollment for health insurance during this time period. Health care insurance plans are not equal and the plan you choose can make a difference in the amount and type of ostomy supplies you receive and the companies that provide your supplies. It’s crucial that people living with an ostomy understand their health insurance plan and shop around for the best plan to meet all of their medical needs. 

Although UOAA is not in the insurance business and does not give insurance advice, it does listen to our members and respond by taking action. We are committed to preserving your access to the supplies that you choose. UOAA’s Advocacy Committee has submitted federal comments and recommendations to the Centers for Medicare and Medicaid Services (CMS) as well as partnering with coalitions and endorsing policy papers that are used when advocating with healthcare insurance companies and key decision-makers. An example of this is the White Paper that UOAA co-authored and endorsed entitled “The Critical Need to Provide Ostomy Supplies Specific to Patient Need to Improve Health Outcomes”

As you do your research during your open enrollment period or become eligible for Medicare for the first time, be cautious with Medicare Advantage Plans (MC Advantage). These are also known as “Part C” and are a type of Medicare health plan offered by a private company that contracts with Medicare. Learn more about understanding Medicare Advantage plans.  According to data (from CMS) over half of eligible Medicare beneficiaries are now enrolled in private Medicare Advantage Plans (1). There are many known problems with these plans such as narrow provider networks, prior authorization requirements and high out-of-pocket costs. 

For the ostomy community, although MC Advantage Plans must cover the same medical services and treatments as original Medicare, how much they cover is up to them.  Some MC Advantage plans have less ostomy supply coverage than Medicare specifically by restricting where beneficiaries can shop for supplies and what kind they approve. UOAA has found that some ostomy patients with these plans must use products from multiple manufacturers. Some MC Advantage plan benefits exclude Medicare HCPCS (Healthcare Common Procedure Coding System) product codes for ostomy supplies such as filters, tape, adhesives, deodorants and other medically necessary items. What this means is that these supplies are not even available for you to choose.

There are many Medicare Advantage Plans in the United States. Each state’s insurance department approves the MC Advantage plans that can be sold in each state and each county within the state. So the plans vary from county to county. The MC Advantage plans usually have approved national provider networks for supplies however UOAA has found that in some counties the MC Advantage plans limit the suppliers you can use to local providers and do not let their beneficiaries choose from the national network providers. This may result in a limitation of your supply choices. One example UOAA has discovered is the difference in suppliers available in a rural county as compared to the national network provider offered to the residents in a large city.

Some MC Advantage Plans also have much lower reimbursement rates than traditional Medicare. These reduced fee schedules have resulted in suppliers to either stop taking individuals with an ostomy, offer lower quality products or offer a limited product line. (see the policy paper link above).  

This practice of restricting beneficiaries to particular brands, specific suppliers or less product coverage, limits patient access to the products they need. The consequence of this practice is that many ostomates are unable to obtain their prescribed ostomy supplies and are no longer able to effectively manage their ostomy.  

If you chose a high deductible plan, remember that although you have a lower monthly premium you will be paying out of pocket for all of your ostomy supplies which are expensive until you meet the deductible requirements. 

If you aren’t on Medicare but are selecting a new health plan, carefully review “basic” plans on the marketplace.  Some of these bare bones plans do not cover ostomy supplies.  

For more tips and information refer to the article released by UOAA’s Advocacy Committee entitled “Are You Covered? Know Your Healthcare Insurance and What You Need”. As you compare plan options and shop around, ask questions such as “Can I use my current supplier with this insurance?”. Here are more: 10 Questions to Ask Before You Choose a Health Plan.

 

 

1. Freed, Meredith, et al. “Half of All Eligible Medicare Beneficiaries Are Now Enrolled in Private Medicare Advantage Plans.” KFF, 1 May 2023, https://www.kff.org/policy-watch/half-of-all-eligible-medicare-beneficiaries-are-now-enrolled-in-private-medicare-advantage-plans/. Accessed 17 October 2023.

Resilience Story: Chris Seyler

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Chris Seyler joined the Phoenix (Arizona) Ostomy Support Groups during COVID times and met up with the group at a park ostomy meeting. Recovering from long term illness and recent surgery, he was ready to find his way back to normal life.

Chris was born in the Phoenix area. While growing up his parents taught him to be active in a team sport, exercise and stay away from bad habits in life.  Chris played basketball and ran track, being nominated for all state in both sports. Receiving a basketball scholarship, and motivated by teachers and coaches, Chris majored in Kinesiology and Science from The Master’s University and became a teacher.

While in college Chris met his wife Colleen, also a teacher. Their son, Nathan, shares his parents’ passion for teaching and athletics and was selected to be in a Disney running movie, MacFarland, USA. Father-Son teamed up to coach school teams in Track and Basketball, winning state Championships.

Following his passion, and inspired by his son, Chris started competing in more events. From 2003 to 2017 he competed in 5ks, 10ks, half and full marathons, triathlons, Ironman, and obstacle racing. It was after AZ IRONMAN 2013 that Chris was diagnosed with ulcerative colitis and started losing weight in 2017.  The next couple of years were tough; in and out of the hospitals for nutrition and dehydration and battling a bacterium in his colon.  Various medications and infusions did not help with easing the illness and emergency surgery was performed in 2019.

Weak from illness and surgery Chris retired from his full-time teaching job and put his running shoes aside.

As time went on and recovery was underway, Chris set a goal to run a 5k. Not able to keep up with his wife, she encouraged him to walk, jog, and run. Hydration was always important as part of Chris’ races, but not having a colon taught him he had to be even more diligent about it.  During Run for Resilience Ostomy 5k 2021, Colleen ran the race. Chris walked and rested with his dog…but he finished…and his passion was returning! While training he worked on improving balance and strength and was able to jog/run at the Arizona Run for Resilience Ostomy 5k in 2022. Chris will be participating this year on the Arizona Virtual Race Team as part of the 2023 Run for Resilience Virtual Ostomy 5k on October 7th.

Passionate about life after ostomy surgery; Chris is teaching part-time, is the Phoenix Ostomy Group Secretary and the Meeting Leader at HH Cowden Center ostomy meetings.

To learn more or sign-up for the Run for Resilience Ostomy 5k visit ostomy.org/5k. You can donate to UOAA fundraisers by Chris and other resilient participants here. 

Even You Can Raise Ostomy Awareness

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By Jeanine Gleba and Ed Pfueller, UOAA

Do you prefer to work behind the scenes for change? Are you crafty and creative? Do you like to share on social media? No matter how you want to do it, UOAA encourages everyone in the ostomy community to do one little thing to raise awareness and smash stigmas this upcoming National Ostomy Awareness Day on Saturday, October 7, 2023.

One option is to just do something to celebrate having your life back after this lifesaving and life restoring surgery!  You are living proof that ostomies are lifesavers and that’s something to shout from the rooftops. With close to one million people living with an ostomy or continent diversion in America, we could really make some noise!

If you find yourself asking, “Well what can I do?”, check out the clever ideas below that people have shared with us and things that people have already started doing for #OstomyDay2023:

Arty Awareness

  • Bake it or order it. One nurse gets custom cookies made to share at her local ostomy awareness day event. Yum!

Social Media Awareness

  • Share Your Ostomies Are Life-Savers story. People have started sharing their personal stories about how having an ostomy has saved or changed their life with friends on social media. You can use our Instagram and TikTok video green screen as a background (found here) or simply print out this sign and take a selfie! Be sure to tag UOAA and use hashtag #OstomiesAreLifesavers #IAmLivingProof and #OstomyDay2023.
  • Social Stickers. Grab some attention for awareness with our “giphy stickers” or use the latest profile photo frame. Better still get some real stickers made and you can put them on water bottles, laptops, cell phones and more to raise awareness all year long! 

On the Scene or Behind the Scenes For Awareness

  • Mascots for Awareness. WOC nurse Linda Coulter has taken to getting every mascot she encounters to help spread ostomy awareness at sports venues and beyond. Online she shares all the fun #Mascots4ostomyAwareness photos. Also out and about is our friends @DoubleBagginit that spread ostomy awareness wherever they go with their clever #ostomybombs.

  • Walk or even sleep in for Ostomy Awareness.  Those not near a Run for Resilience event or who more are more inclined to sleep in can still donate to the cause while others often do an informal walk or even ride their horse as part of the Virtual Ostomy 5k.

  • Light up Your State Capitol. An advocate in Pennsylvania has worked with her elected official and the capitol building in Harrisburg, PA will be lit blue and green (UOAA official colors) recognizing Ostomy Awareness Day on October 7th between 6:30PM – Midnight EST! As this advocate wrote “Amazing what can happen when we open the dialogue!” The Capitol Building in Baton Rouge, Louisiana will also be lit to celebrate the day so inquire with your state!
  • Virtual Race Car. Someone else participates in the iRacing community. He painted his virtual racing car to raise ostomy awareness. Check out photos and story here.
  • Public Displays. In past years, nurses and others have done ostomy awareness displays at local hospitals or libraries or have hosted picnics with their support groups.

Give it some thought.  You might come up with your own unique idea!  If you do, we’d love to hear them, so send us an email at advocacy@ostomy.org.

Keep checking our webpage for all of the fun events that will be happening like UOAA’s Virtual Happy Hour on October 7th and other ways that you can raise awareness! 

 

UOAA Supporting Ostomy Nurse Certification

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Thanks to the ongoing generosity of the ostomy community donating to UOAA’s scholarship fund, we were able to provide this award in the amount of $3000 to another nurse. UOAA is excited to announce that the 2023 recipient of the Educational Award for Ostomy Nurse Certification is Ashlee Cranage from California!

Below a grateful and honored Ashlee shares a little bit about herself and her motivation to become a certified ostomy nurse.

My name is Ashlee Cranage and I am so honored to be the recipient of UOAA’s Educational Award for Ostomy Nurse Certification. Becoming a certified ostomy care nurse is no easy task, and I am grateful to be recognized by UOAA as I strive to make a difference in the ostomy community.

I joined Community Memorial Healthcare in Ventura, CA as a new graduate registered nurse six years ago, starting out on the post-surgical unit. In March 2022, I joined the inpatient Wound and Ostomy Care Department working alongside both a certified Wound Ostomy Continence (WOC) nurse and a certified wound specialist (CWS). This job opportunity has opened my eyes to the impact that certified ostomy nurses bring to the healthcare field, and most importantly patient care. I became a Certified Wound Care Nurse (CWCN) in September 2022 and became a Certified Ostomy Care Nurse (COCN) in April 2023. 

One thing that I have learned this past year is that there is such a need for certified ostomy care nurses, and I am excited to be able to contribute to that need and make a difference!

Prior to working in wound and ostomy care, my ostomy knowledge and skillset was very limited. I could proficiently change a simple pouching system, but I did not have the confidence to troubleshoot a leaking pouching system, nonetheless teach patients adequately about their ostomy care post-surgery. Once I began my new role, I started seeing patients with ostomies more frequently and I knew I needed to be more comfortable with their ostomy care. Following our certified WOC nurse periodically and being present for the meaningful conversations and positive impact that she had on her patients, made me want to further pursue my education to do this too. Being present for those hard conversations, watching her connect with her patients and continue to follow up with them post discharge as well, motivated me to be able to also achieve this higher skill level and knowledge to make an impact. 

With my recent certification in ostomy nursing, I now have the knowledge to better my nursing practice and care for the patients with ostomies that our department sees on a day-to-day basis. I have the expertise to be able to be there pre and post-surgery, help patients navigate life with an ostomy and support them throughout their journey. I aspire to continue to work alongside my colleagues with the creation of a free ostomy clinic for our community to better be able to help and support at any time during their ostomy journey, whether they’ve had it for 2 weeks or 20+ years. I also aspire to be a support system for my patients by joining my colleague in holding a monthly ostomy support group where individuals can come together to share their experiences, tips and tricks and seek information or support that they may need. For some, getting an ostomy, whether it is elective or emergent, may be a scary situation in the beginning. However, having a certified ostomy care nurse to help navigate any challenges and provide information and support can turn a scary situation into a learning opportunity full of hope and willingness to learn. 

One thing that I have learned this past year is that there is such a need for certified ostomy care nurses, and I am excited to be able to contribute to that need and make a difference!

Congratulations, Ashlee!

The next scholarship application will open, pending funding availability, in January 2024 and closes on June 30, 2024. 

If you’d like to donate to the Ostomy Nurse Scholarship Fund online, please complete the Donate Form, and at the bottom under the ”Additional Comments” section, please note “Ostomy Nurse Scholarship Fund”. You can also send a check made payable to UOAA, in the memo line include the Fund name, and mail to PO Box 2293, Biddeford, ME  04005-2293.

Resilience Story: Maria Sandoval

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Hi, my name is Maria Sandoval. I wanted to come on here and share my story with you. You may ask, why am I putting the Run for Resilience Ostomy 5k run/walk/roll together in my community? Because it has given me my life back.

In November of 2022 I had surgery to get an ostomy because my ulcerative colitis was getting worse. I was diagnosed with ulcerative colitis in 2012. Ulcerative colitis is an inflammatory bowel disease (IBD) that causes inflammation and ulcers (sores) in your digestive tract. Ulcerative Colitis affects the innermost lining of your large intestine, also called the colon, and rectum. In most people, symptoms usually develop over time, rather than suddenly.

In my case my symptoms did develop over time and things got worse in 2020. The medication I was put on was no longer working. My body was shutting down and therefore my doctor recommended colorectal surgery.

It’s important to me to shine light on ostomies and to give hope to my ostomy community in Arkansas and show them that they are not alone.

Me during a Remicade infusion for ulcerative colitis before making the choice to have ostomy surgery.

I had no idea what this surgery was nor did I know anyone that had undergone this type of surgery. The fear of the unknown put me off from having this done. I was fortunate to have a great surgeon with a great team who gave me all the information I could ask for. They were patient with me, and so understanding of all my feelings. They answered my questions and addressed my concerns. Having that information and having faith, helped me make the decision to have this surgery. I had hope for the first time since being diagnosed with ulcerative colitis.

Currently, it’s 2023 and I am 33 and I have my life back. For the first time in a decade I can honestly say I feel safe in my body. I have energy, I feel empowered and I’m here to share my story. Making the decision to have my colon removed and have an ostomy was the best thing I could have done for myself.

I am here to stop the stigma around having an Ostomy. I am here to highlight the positives of having one and how it has impacted my life.

I learned about UOAA through social media. I went to ostomy.org to look up what UOAA is all about and saw that they had a 5k run for Ostomy Awareness Day every October. I have always loved to run in races and thought how cool it would be if I could bring this run to my area. I contacted UOAA to see if they would like to have Northwest Arkansas be part of their Run for Resilience Ostomy 5k and they were more than happy to do so.

I was so proud to have finished the race. I wasn’t racing for time, rather, I was racing for me. My ostomy gave me back my confidence in running.

Me 19 days after my Ostomy Surgery.

The Run for Resilience Ostomy 5k is the major fundraiser for all the great things UOAA does. UOAA has great resources to help with recovery and one of those resources I happened to stumble upon is their support group finder. UOAA does a great job of locating support groups and WOC nurses in your area. Forever grateful for that! I also use their site for educational information, self-advocacy checklists, and finding events they have going on, like the Run for the Resilience Ostomy 5k and their National Conference.

By hosting and taking part in the Run for Resilience I hope to spread awareness on ostomies and continent diversion surgery. It’s important to me to shine light on ostomies and to give hope to my ostomy community in Arkansas and show them that they are not alone. That they have a community to go to.

My mother is helping me host our first event. I am so grateful to have my family help me through this journey. My husband and mother were my caregivers before and after surgery. Making the decision to have surgery was a difficult one, but they both helped me through it.

I hope everyone no matter of where they are out takes part in a Run for Resilience event near them or the Worldwide Virtual Ostomy 5k. I love sharing photos like the one here of a half-marathon I ran five months post-op! Everyone should go at their own pace and talk to their doctor, but for me I think it was one month after my ostomy surgery when I started to train for the half marathon. I took it pretty slow. I began by walking a mile and slowly worked my way up to a jog. By month four I was feeling great and feeling like my old self. I was so proud to have finished the race. I wasn’t racing for time, rather, I was racing for me. My ostomy gave me back my confidence in running.

I would run races here and there before my ostomy surgery. My ulcerative colitis would make it difficult at times to run, but when it was in remission I was happy to get back to running. I have always enjoyed running because it was the one thing I could control in my life. My ostomy gave that back to me. Ostomies are truly life savers!

To sign-up or donate to a Run for Resilience Ostomy 5k event near you visit ostomy.org/5k. Support or learn more about Maria’s event, the Rogers, Arkansas Ostomy 5k and follow her 5k on Instagram.

Celia’s Story: Feeling at Home with Short Bowel Syndrome

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Since short bowel syndrome is not something most people talk about every day, I am excited that we have a month to bring awareness to it. As someone living with short bowel syndrome (SBS) and an ostomy, I have learned to be grateful for the technologies and doctors who have helped keep me alive through my surgeries and infections. And I am proud of myself for developing the self-reliance to find ways to make my life easier.

To learn more about SBS, visit https://sbs-whattoknow.com/. To join the community and talk with others who are living with SBS, check out https://www.facebook.com/TakedaSBS/.

People with ostomies come from all stages of life, and we all have different stories to tell. But we also share some common experiences—and we can learn from each other. I have an ostomy because of SBS, a rare digestive disorder that many people may not know much about. If you asked me about my memories of my SBS diagnosis, I couldn’t answer that because I don’t remember it. My SBS diagnosis happened right after I was born. Fortunately, my doctors quickly ran tests and diagnosed me with Hirschsprung’s disease, a condition at birth where certain nerves are missing from parts of the intestine. I immediately had surgery to remove my colon and half of my small intestine, which led to my SBS diagnosis and having an ostomy.

My parents, who were graduate students at the time, were as ready as they could be to bring home a baby, but I think they had prepared for the predictable, everyday challenges of having a “normal” baby, not for me. After my surgery, I spent about one month in the NICU, where the nurses instructed my parents on how to care for me.

When my parents brought me home, they raised me to never feel different and didn’t see my condition as something to hold me back; they wanted me to be independent, which I am! My health condition has been just a part of who I am. I grew up getting hooked up to IV nutrition, a form of parenteral support or PS, every night. It was such a part of my routine that I didn’t know any different. SBS was just part of my life.

From a very early age, I learned how to take care of myself because that’s what parents teach their children. If I hadn’t had SBS, they would have potty-trained me. Instead, they taught me how to drain my ostomy. Their attitude was, This is going to be difficult, but she has to do this. So, we would work on the steps together. Just like other kids learning to make it to the toilet, I learned how to change my ostomy so that I would be ready for school.

Starting preschool was an adventure. How many schools are equipped to care for a kid with an ostomy? Wildly enough, the director of the preschool was an older woman who had friends with ostomies, so she was familiar with my needs! It’s a great example that, despite age differences, we can connect through our ostomy knowledge and help each other out. Eventually, the preschool teachers and director trained the staff at my elementary school when it was time for me to start my education.

As I was growing up, all my friends knew that I had a health condition. I also think I was lucky in that, while I was technically very sick in the beginning, the doctors were able to address it early on. That meant that even though I had a rare digestive disorder, I was actually not a very sick child. Plus, I just didn’t have that concept of shame. For show-and-tell, I’d pull up my shirt to show everyone my line for my parenteral nutrition. And they’d all be like, “Cool! There’s some weird plastic thing hanging out! Moving on…” No one cared.

Then, when I was in middle school, we moved from California to the East Coast. For the first time ever, I had to share my condition with others—in a student population hundreds of times larger than the tiny magnet school I’d left behind. Plus, my health condition started flaring up for the first time. I missed the first day of school due to my first-ever line infection. At that point, I hadn’t really processed what my medical condition meant for my life.

So, I was dealing with complex new health issues while trying to pretend I was “normal.” I got through middle and high school through sheer determination. While I enjoyed my time at school, I often felt like an outsider—like I couldn’t tell people about my true self. I shrank into myself and let fear cause me to lose who I really was. I realized, for example, that the type of shirt “everyone was wearing” would show my line. If I wore the “in” jeans, which were low-waisted, my ostomy bag popped out. I was already not like everybody else just by my clothes alone. Add in missing a lot of school due to hospitalizations and infections, and people would recognize me as “the girl that’s gone all the time.” I let go of hobbies, friends, talents, and dreams just to blend in.

These days, more than two decades after my SBS diagnosis, I don’t worry about blending in so much. Instead, I am clear about my needs, and I’ve figured out what works for me. It doesn’t matter if my jeans are on trend—feeling good and confident in my own skin and my own life matters most. From my clothing choices to creating an ostomy station in my bathroom that’s both functional and cozy, I have learned to set up the things I need to feel comfortable and happy. This also means that when something is stressful or hard, like if the bag breaks in the middle of the night, I already have a bag ready on my nightstand so that I can deal with the issue. I try to think through what might happen when I am clear-eyed and calm so that when difficulties arise (which, in my experience, they have), I can focus on fixing the problem.

I’ve been managing my ostomy on my own since high school, and even when I’m in the hospital or being visited by nurses at home, I take charge of changing my bag. Sometimes the nurses are curious to see how a patient does it independently. I think that as they watch me, they pick up tips and strategies to show their patients different—but still medically acceptable—ways of managing their bags at home. We (or our caregivers) learn the correct procedures in the hospital, and we all find ways to adapt to SBS.

Thankfully, hospitals and homes are two separate things. So when I bring my SBS home with me, I try to be a good host and make it cozy and comfortable.

In recognition of Short Bowel Syndrome Awareness Month, I would like to encourage my fellow SBS patients and their caregivers to stand up and become their own best advocates. As I said, people with ostomies come from all stages of life, and while every patient is unique, we are all in this together.

This article was created by Takeda.

Editor’s Note: This educational article is from one of our digital sponsors, Takeda. Sponsor support along with donations from our readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Take Back Air Travel Rights

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By UOAA Advocacy Manager Jeanine Gleba

Imagine having your ostomy leak during a flight and being denied access to the restroom. 

As part of our Advocacy Agenda, UOAA strives to protect the rights of people with an ostomy or continent diversion and eliminate discrimination at school, work, and elsewhere in their lives to ensure they are accepted as normal, healthy individuals. At the national level, we advocate for legislation that will improve their rights, protections and access. We currently have an opportunity to advocate for new protections and equal access for airline passengers with disabilities and improve air travel experiences.

We’ve shared in the past the answer to the question “Does an ostomy qualify as a disability?” in this blog. Not all disabilities are visible. People living with an ostomy, which is a physical impairment that affects daily living and requires a prosthetic to replace the function of the bowel or bladder, are a hidden disability group. People living with an ostomy should have airplane rights too.

Background  

The Americans with Disabilities Act does not cover disability rights in air travel. In 1986 President Ronald Reagan signed the Air Carrier Access Act (ACAA) into law. 

Every five years, Congress must renew the authorization for the Federal Aviation Administration (FAA). This provides an opportunity for federal lawmakers to examine the airline industry and propose any reforms or updates. The last renewal was in 2018 and it mandated the creation of a Bill of Rights for passengers with disabilities. An advisory committee was formed to advise the Secretary of Transportation on the air travel needs of these passengers. 

In 2022 the Department of Transportation released “Airline Passengers with Disabilities Bill of Rights”. This document describes the fundamental rights of air travelers with disabilities under the ACAA and its implementing regulation, 14 Code of Federal Regulations (CFR) Part 382. It is important to understand that this Bill of Rights does not expand the rights of air travelers with disabilities. They are a helpful summary of the existing law under the ACAA.  For example as explained in the seventh right, ostomates may not be aware that airlines must allow assistive devices as carry-ons in the cabin free of charge consistent with safety rules. This includes medical devices and/or a personal amount of medication that assist the passenger with his or her disability.  Your ostomy supplies are medical devices.

Present Opportunity for Advocacy

Despite the provision of the ACAA that prohibits disability-based discrimination in air transportation, many passengers with disabilities continue to have challenging and frustrating experiences. They experience significant barriers to and with traveling by air such as damaged assistive devices, inaccessible restrooms, inappropriate treatment of service animals and inadequate disability awareness and sensitivity training of airline and contractor personnel.

Enforcement of ACAA protections is limited to administrative action and civil fines. Unlike most other civil rights laws, the ACAA lacks a guaranteed private right of action; that is the ability to sue in court. Consequently, people with disabilities typically receive little if any compensation for personal injury or damaged property such as wheelchairs. 

The current authorization expires at the end of September 2023, so Congress is preparing to write a new 5-year authorization bill and vote on it in the coming months.

Representative Dina Titus (D-NV- 1) and Senator Tammy Baldwin (D-WI) have introduced the Air Carrier Access Amendments Act, which is a bill to protect the rights of passengers with disabilities in air transportation. To read the bill text and see the list of current co-sponsors go to H.R. 1267/S. 545.  The Act calls for improved air travel safety, accessibility and accountability. The Act has meaningful provisions such as:

  • Establishes a private right of action, allowing passengers with disabilities to sue airlines for damages in civil court
  • Ensures new airplanes are designed to accommodate the needs of people with disabilities by requiring airlines to meet defined accessibility standards. These standards will address safe and effective boarding and deplaning, visually accessible announcements, seating accommodations, lavatories, and better stowage options for assistive devices, which airlines would have to comply with five years after those standards were issued

We believe all airline personnel should receive sensitivity and awareness training on medical conditions that might need urgent access to a restroom during a flight. Lack of access to one during an unexpected pouch leak can result in an embarrassing and unnecessary accident. All travelers with disabilities should be treated with dignity.  Additionally, it is important for the ostomy community to have access to airline lavatories that provide accommodations (such as a shelf to place their medical supplies) for emptying/changing/disposing of an ostomy pouch and/or catheter in a safe and clean environment. 

The ACAA must be updated to improve access to air transportation for individuals with disabilities.  UOAA joins with other patient and disability organizations to support the Air Carrier Access Amendments Act of 2023 (H.R. 1267/S. 545). 

No person living with an ostomy should ever be discouraged from traveling, whether for work, to see family and friends, take a vacation, or go on a journey around the world. 

Get Involved

Below are ways you can get involved:

  1. Request that your elected officials become co-sponsors of the Air Carrier Access Amendments Act of 2023 (H.R. 1267/S. 545) and ask them to include the Act in the next FAA authorization bill. Take action here.
  2. Organizations such as United Spinal and wheelchair users are demanding airline accessibility. They are sharing their #JustPlaneWrong stories on social media.  Share your experience on social media using hashtags such as #JustPlaneWrong, #TravelwithDignity and #AirTravelRights and tag @UOAA on Twitter or @UOAA_ostomy on Tik Tok or @uoaa_ on Instagram. 
  3. We need many people to join the cause. Please spread the word with your connections on social media, email contacts and encourage your family, friends, and colleagues to engage with us. You can share this link.

Together we can protect the rights of passengers with disabilities in air travel!

Conference Couple

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Ileostomates Andy and Sandee began their life adventures at a national ostomy conference 19 years ago.

By Ed Pfueller, UOAA Communications & Outreach Manager

When Andy Kyriacou stood up to ask a question of a panelist at the 2004 United Ostomy Association (UOA) Conference in Kentucky, he got more then just a good answer. He inadvertently found a new life partner.

The session was about dating and designed for single ostomates. Sandee Prechtel was on the panel and brought the perspective of dating again after losing her husband of 39 years. Andy, who became a widow losing his longtime wife the previous year, asked about her experience dating again after, now with an ostomy.

Andy and Sandee at the 2019 UOAA National Conference in Philadelphia. The couple met at a conference in 2004 and have not missed a conference since.

“Well, you kiss a lot of frogs before you find a prince,” Sandee recalls saying. They remember it being a great panel discussion that encouraged the audience to be confident in themselves.

During the rest of the conference, the pair would run into each here and there and chat briefly before sessions. “She was very easy to talk to,” Andy remembers.

As is tradition at UOA and now UOAA conferences, the closing night party ended with dancing. Andy asked Sandee to dance, and a small spark kindled. They danced the last dance of the evening.

“I did not want the evening to end so asked her to go for a walk along the Ohio River,” Andy remembers. “We walked and talked from around midnight to 1-2 am.”

They talked about life goals, former spouses, aspirations, and soon realized they had much in common. “We found out we both had two adult children and were in longtime marriages,” Sandee says.

“Well, you kiss a lot of frogs before you find a prince”

Andy was living in Connecticut and Sandee in Arizona so they exchanged emails and made tentative plans to attend the next conference the following year. Once they started emailing and talking on the phone, however, it became clear they’d want to see each other before the next conference.

“Sandee invited me to Tucson for New Years Eve, 2005 and I figured it would be either the longest or shortest few days, depending on how it went,” Andy remembers. Andy had a chance to meet her kids and it became clear their relationship would be more then just a friendship. “We planned future rendezvouses right after that,” Andy says.  The long-distance relationship was a fit for their mutual love of travel and in the next few years they met up in New Orleans, Virginia, Cleveland, Hartford and of course at the next UOA conference in 2005 in Anaheim.

When UOA annual conferences morphed into UOAA biennial conferences, they kept on attending to see each other and the many friends they have made over the years.

“It really is a life changing experience you can’t find anywhere else to be among that many ostomates and their partners. You have no idea who has an ostomy and who does not,” Sandee says. “There is always something new to learn, we look forward to going to explore all the new cities and locations.”

Both are also active volunteers in their local ostomy support groups in Hartford and Tucson. Andy served as Vice President in his group, Sandee was President of her group. At the 2017 National Conference in Irvine, Sandee was awarded the Affiliated Support Group Leadership Award by UOAA for her exemplary service to her local ostomy community.

“I did not want the evening to end so asked her to go for a walk along the Ohio River”

She is particularly proud of the informal and well attended new ostomate monthly meeting her group has been hosting for many years. “The tips they receive are really important in their recovery,” Sandee says. If a new ostomate has questions or concerns about dating and relationships the couple is happy to share their personal story.

Sandee has since stepped back from an ASG leadership role but Andy is quick to point out, “She is the glue that holds everything together.” When Andy retired in 2007 the couple began to split their time between Connecticut and Arizona.

In 2012 knowing that Sandee loves heart shaped rings, they picked out a diamond ring and Andy got down one knee.  Though not married on paper, they are committed life partners. They continue to always be up for new adventures.

“We’ve never been to Houston, we’re really looking forward to it!” They both say about UOAA’s 8th National Conference this August. “And As long as we are physically able to, we plan to keep going to each one.”

It will be 19 years since that fateful connection in Kentucky. We’ll save the last dance for them again this year in Houston and ask Sandee if she thinks she has found that prince.