UOAA Advocates in Action

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Ostomates Provide Insight to Lawmakers on Behalf of UOAA

By Ellyn Mantell and Michael Quear

Left, Ellyn Mantell with UOAA Advocacy Manager Jeanine Gleba, right, outside New Jersey Senator Cory Booker’s office.

UOAA Representative – Ellyn Mantell

There is so much frustration and dissatisfaction around the government right now, that it is easy to forget all of the wonderful things that continue to be done behind the scenes, and I want to share with you my experience in that regard. On Sunday, March 3, 2019, my wonderful support guy, husband, Bruce, and I traveled to Washington, DC to attend the annual Digestive Disease National Coalition meeting. I was asked to be a Patient Advocate accompanying Jeanine Gleba, Advocacy Manager for United Ostomy Associations of America. She and I have a special bond, since she lives in New Jersey and has attended support groups’ meetings with me, and we both have the same goal, which is increasing awareness and getting the most for ostomates.

After meeting key personnel and greeting other attendees on Sunday night, I felt empowered to be part of Team 5 the next day, when we would go to “the Hill!” Monday morning, following a warming breakfast (which we needed since it was windy and oh, so cold walking up toward the Capitol) and a basic logistics session, we headed to the Hart Building, not actually on “the Hill” but very exciting, nonetheless. I saw the offices of Senators about whom I had read or seen on television…a rare opportunity to be in the “Place Where It Happens”!

Our team was awesome and so inspiring! In addition to Jeanine and my presentation (visual aids are great, and my emergency kit pouch was a surefire way for the Legislative Aides to get the point: the necessity for funding for supplies, etc. as well as not being denied benefits for pre-existing conditions) we had two other Patient Advocates. Carolyn was invited by Megan Glynn, Manager of National Programs for the American Liver Foundation, and she is alive because of a living donor liver transplant. This is quite amazing, since the liver is composed of two lobes. One lobe can be transplanted and both donor and donor recipient’s livers will regenerate. It is truly amazing! Carolyn was making a request her life-saving  medications, which cost thousands monthly, may bankrupt a family trying to keep alive the patient they love…a terrible choice to have to make. Generics and off label usage may make a huge difference, but funding is always the issue.

Cheryl Velba then spoke with the Legislative Aides about her Short Bowel Syndrome, she is a Rare Disease Advocate. Surviving the removal of most of her colon and small intestine, she is one of the few to survive such a severe twisting of her bowel. This life-threatening occurrence, and the damage done to her body includes not only digestive issues but ocular ones, as well. She is asking for certain medications, again, costing thousands a month, be switched for generics or off-label usage. We all urged the aides to impress upon the Senators for whom they worked to limit out-of-pocket costs as well as curb current and future payer tactics to shift costs onto the patient.

The Digestive Disease National Coalition stands for Research of Digestive Diseases; Patient Access to Affordable, Quality Health Care; and Prevention and Awareness of Digestive Diseases. Digestive Diseases are chronic and, in many cases, debilitating and disabling. I was deeply honored to be able to bring awareness to the young aides who may not have known anything about our issues before yesterday, but when we were done, had to have learned another slice of life, the struggles of many…and hopefully, they will impress that upon our NJ legislators, Senator Menendez and Senator Booker.

 

UOAA Representative – Michael Quear

I recently attended the Digestive Disease National Coalition Annual Spring Public Policy Forum as a representative for UOAA. Actually, I participated in a group that was meeting with Congressional staff. My group was made up of Pennsylvania residents; so we met with staff of the PA Senate delegations and selected House Members staff. In my group I was the only person with an ostomy, but I certainly had experience with a digestive disease!

I was diagnosed with ulcerative colitis when I was 14; 4 years later I had my surgery – a total colectomy with a permanent ileostomy when I was 18. It’s hard to believe that was 42 years ago. Plus, I certainly knew my audience. I’d had the privilege of serving as professional staff for 20 years on the Committee on Science Space and Technology in the US House of Representatives.

I know these are busy folks and that we would likely have only 20, at best 30 minutes of their time. (We actually only had 15 minutes!) So I thought what are the points I would like them to remember about life for an ostomate and what impacts what they do by allocating funding and how healthcare policy impacts people like us.

First off, show and tell. When you say the word colostomy most people think a bag filled with et cetera. An ileostomy draws a blank stare. So I took along the appliance I wear, so they could feel it, see exactly what it looks like and how it works.  Using my thumb I explained my stoma. I also explained that despite the revolutionary advances in medical diagnostic equipment, prosthetics and drugs that in ostomy products there have not been many major breakthroughs in ostomy solutions, but research funding targeted for ostomy products could change this.

I also talked about the stigma that ostomates often feel.  In general, an ostomy is something some in the public feel is only slightly worse than death.  I was 19 when I heard someone say, “I’d rather be dead than wear a bag….” And I’ve heard similar remarks occasionally thru the years. As it is national Colorectal Cancer Awareness Month, I mentioned that people who suspected they had a serious gut issue were afraid to be seen by a doctor because of this stigma. I recommended their boss use his public platform to remind people this is a procedure that saves lives, not ruins them.

Finally, the cost.  I told them the cost of my appliance and that some people need to change it daily, others every 4-5 days. Regardless, over the course of a year costs add up. Therefore, it is important that insurance and government programs cover these costs. When Congress fiddles with health care funding and/or policy they need to think about people like me with serious gut disease in general.

Was it a long day? Yes!  Was it useful – I hope so!

But I think it is one that the staff will remember.

Ostomy Support for Colorectal Cancer Patients

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Whether Temporary or Permanent UOAA information and Support can help you Succeed in Life with an Ostomy.

By Ed Pfueller, UOAA

March is Colorectal Cancer Awareness Month. Colorectal cancer often has no warning signs or symptoms, and it affects more than 140,000 men and women each year. It is largely preventable with screening and treatable if caught early.

What can you do? Congress has introduced a bill Removing Barriers to Colorectal Cancer Screening Act (S668/H.R.1570). This act would fix a problem in Medicare that is a major deterrent to senior citizens getting screened. Currently, Medicare covers screening colonoscopies at no cost to the patient, but if polyps are removed during the screening procedure, beneficiaries are hit with unexpected costs.  Ouch!  This bill waives Medicare coinsurance requirements with respect to colorectal cancer screening tests, regardless of the code billed for a resulting diagnosis or procedure.

You can click here to help UOAA and other advocacy organizations advocate for final passage of this legislation in 2019.

You’ll also find that colorectal cancer survivors engage with United Ostomy Associations of America (UOAA) all year long.

If your cancer requires surgery you may have been told you’ll need an ostomy. In many cases, this is a temporary ileostomy (from the small intestine) or colostomy (large intestine). This may be required to give a portion of the bowel a chance to rest and heal. When healing has occurred, the colostomy can often be reversed and normal bowel function restored. A permanent colostomy may be required however when a disease affects the end part of the colon or rectum.

A colostomy is a surgically created opening in the abdomen in which a piece of the colon (large intestine) is brought outside the abdominal wall to create a stoma through which digested food passes into an external pouching system. A colostomy is created when a portion of the colon or rectum is removed due to a disease process such as colorectal cancer or a damaged area of the colon.

If you need lifesaving ostomy surgery remember-you are not alone. 725,000- 1 million people in the U.S. of all ages and backgrounds live with an ostomy. You too can do this, but it is critical to connect with UOAA resources. Especially seek out one of our almost 300 UOAA Affiliated Ostomy Support Groups in the U.S. before, or shortly after, your surgery. Peer support and preparation can put you on the path to success in what will be a challenging time both emotionally and physically.  Ask if the hospital has an ostomy nurse and insist on having your stoma placement marked before surgery. These and other self-advocacy tools are paramount and outlined in our Ostomy Patient Bill of Rights.

Our new ostomy patient guide is available to all who need it and is a great overview of what to expect. Our colostomy guide has even more in-depth information. You may feel too overwhelmed as you are discharged at the hospital to fully understand ostomy pouching systems and accessories and lifestyle considerations. If you have a question medical contact your doctor or nurse, in you have a quality of life question- UOAA likely has the answers.

Let’s clear up a few myths right from the start and learn some facts about living with an ostomy. After the healing period outlined by your surgeon you can swim, bathe, be intimate, travel, and embrace a new normal life. After some trial and error, you may also eat most of the foods you have been able to eat in the past.

Certified Wound Ostomy and Continent Nurse Diana Gallagher has outlined Tips for a Succesful Recovery After Ostomy Surgery for us that you should use as a roadmap for success.

Contrary to what it may seem from social media not everyone with an ostomy will be a candidate for a reversal operation. We also have a blog post to learn more Facts About Ostomy Reversals.

We do encourage you to read patient stories and tell your own story. People have ostomies for a wide variety of reasons and people with bowel diseases you may not have been aware of often have an increased risk for colorectal cancer. This includes ulcerative colitis, Crohn’s disease, pre-cancerous polyps, and hereditary syndromes such as familial adenomatous polyposis (FAP) or hereditary non-polyposis colon cancer (HNPCC), or Lynch syndrome.

Celebrate Colorectal Cancer Awareness Month and connect with Fight Colorectal Cancer or the Colon Cancer Alliance on how to make an impact. And even if your ostomy is temporary, remember to speak out on Ostomy Awareness Day on October 5th, donate or join our advocacy efforts, or a support group to give back to the next cancer survivor in need.

UOAA is proud to be a member organization of the National Colorectal Cancer Roundtable (NCCRT). The NCCRT is a collaborative partnership with more than 100 member organizations across the nation, committed to taking action in the screening, prevention, and early detection of colorectal cancer.

You Can Always Learn Something New

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By Karin, Newbieostomy

Whether you’ve been a part of the ostomy community for 20+ years or joined it yesterday, United Ostomy Associations of America’s (UOAA) National Conference is worth attending. There are two main themes that come up time and time again when talking to people about their experiences at the conference: education and friendship. You can read about the bonds that are formed at the UOAA conference in the post Ostomy Camaraderie.

Regarding education, it doesn’t matter if you just got your ostomy or you’ve had it for years, there’s always something new to learn because technology advances and our bodies change over time. If you’re like me, you’ve scoured the internet looking for answers to all your questions and have probably found quite a few answers hopefully here on ostomy.org or on my blog newbieostomy.com, but you might still have some other questions that are left unanswered.

Queue UOAA’s National Conference. Held every two years UOAA does a fabulous job of bringing in professionals to share the most up-to-date research and information. At the last conference in Irvine, California they brought in doctors, surgeons, WOC nurses, nurses who also have an ostomy, a geneticist, a pharmacist, a psychologist, scientists, a dietician, TSA officials, and people with inspiring stories, and probably others that I’ve missed – all who are happy to answer your specific questions and share their knowledge. That’s quite a toolbox for us ostomates to have all in one place! Here is a tentative program of what to expect at the upcoming conference August 6-10, 2019 in Philadelphia, PA.

Conference attendees speaking directly to TSA agents about traveling with an ostomy.

This year there are even suggested sessions and reserved meeting space for people with similarities. There is a Young Adult Track (Discount if 25 and under), Pediatrics Track and a Caregivers Track, so feel free to bring your family or partner along as well.

“As a first-timer it was great, so much info.” – Eric, first-timer

I lean toward the studious side, so I brought a notepad and paper to every session I attended to help me soak up and remember as much knowledge as possible. In addition to (or in lieu of) taking notes during sessions, I’ve taken pictures of the slides I thought were really valuable.

Don’t want to draw attention to yourself with your hefty notebook or by holding your camera up every time there’s a new slide? Some speakers might also be willing to share their powerpoint presentations with you if you reach out to them after the event, or they might let you record the sessions if you get there early enough to ask permission.

“I have learned more in these few days than I have in the almost 6 years with my permanent ostomy.” – Daniel, first-timer

Wow. Right?

That’s pretty powerful.

With dozens of sessions offered, it’s can be hard to choose which one to go to if a couple of them conflict with each other. Luckily, each person has their own needs and interests so it’s likely that someone you know will go to a different session from you, which gives you both an opportunity to share what you’ve learned.

You might think that the sessions are only useful to a first timer, but not so. Derek has gone to every conference and has had his ostomy for almost 20 years, yet he still chooses to attend the “Basic Colostomy” session because there’s always something to learn and the other people who attend might ask a question he hasn’t thought of. While there are many repeat (basics) sessions offered every conference, the UOAA does a great job of bringing in new speakers to talk on different subjects as well. This year UOAA is also highlighting talks that will be of interest to both the new and experienced ostomate.

Like Derek, I also found value in the sessions from this conference even though I went to a ton of sessions at my first conference in 2015. I was happy to see new sessions offered, and to be able to attend a couple sessions that had conflicted with something else I’d prioritized hearing. I went to at least one repeat session that I noticed was really similar, but even there, I felt like I gained new knowledge and perspective because my brain can only hold so much information (even if we take notes).

In addition to attending the educational sessions and exploring the ostomy product exhibit hall, there was a hospitality area open every day where you could put a pushpin in the map of the United States to show where you’d come from, ask questions of local volunteers, and talk to members of the UOAA Advocacy and Communications team. There was also a free stoma clinic where attendees could sign up for an appointment to meet with a WOC nurse to troubleshoot pouching and skin troubles. On top of that, there were great speakers at the opening and closing ceremonies, and a really fun closing night party complete with dessert, dancing, and a perfectly executed fashion show.

This year the conference is at the Philadelphia 201 Hotel in the heart of the city and there are even more social events such as a free improv comedy show and music act, a Roaring 1920s Casino Night, and plenty of free time to explore an awesome city with new friends.

Education Amid Tragedy

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By Susan Burns, UOAA President

It’s heartbreaking. So many of us are torn apart by the recent news that a ten-year-old took his own life in Louisville, Kentucky. What we know is that he was a kind soul, this boy named Seven Bridges, and he was a victim of bullying. His medical history is also similar to many in our community in that he had an ostomy at a young age. He had an imperforate anus and braved over 20 surgeries in his short life. His mother Tami Charles said he lived an active life with an ostomy and loved swimming and playing as all children do.

In the past year, Tami said his ostomy was reversed but he continued to have some anal leakage and he was teased and ostracized at least in part because of the smell. It is unfortunate that many early news reports perpetrated the stigma that a “colostomy bag” smells and was the reason for the bullying and his despair. Their headline choices were faulty and sensational.

Source: Seven Bridges GoFundMe Page

What we don’t know is what goes on in the mind of a young child and why Seven took the most drastic of actions. His brave parents are taking the rare step of speaking out in this most difficult time. They want other kids suffering bullying to be #SevenStrong and demand that adults take meaningful action. They want all children to understand the dangers of bullying and have already organized local benefit events and forums. We should all be teaching our children love and acceptance of all differences.

Many of you have reached out to me feeling devastated and lost by this tragedy. You are also asking what you can do in light of such sad news beyond reaching out to the family online.

I just ask that you live the mission of UOAA in your daily lives and continue to raise ostomy awareness, advocacy and education in your community. More work needs to be done to fulfill our vision of a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically and psychologically.

UOAA relies on all of you in our community and specifically nurses and physicians to identify families of children who have had ostomies (and reversals) and make them aware of ostomy support resources.

Please spread the word that caregivers, parents and children are welcome at all of our almost 300 affiliated support groups nationwide. We know they may be the only parents or young people in many groups, but we have to start somewhere to build a network and provide a welcoming atmosphere to all at our affiliated support groups. Luckily there are also online support groups for families on Facebook where parents can find each other.

Several years ago we identified pediatric specific resources and education as a pressing need. It is just a start to the work that needs to be done but in the past year we released for your use:

  •  Every child matters! Pediatric Patient Bill of Rights, this is a statement of the rights to which infants, children, teens and their families should receive when facing ostomy surgery. It is a tool to empower parents/legal guardians to advocate for their child during all phases of care. These rights are meant to ensure a positive patient experience and best outcomes to achieve a desirable quality of life for the infant, child, or teen living with an ostomy and their family.
  • Our Pediatric Messages of Hope Brochure, written for parents of children with ostomies, emphasizes the lives of three adults who had ostomy surgery as children who are now living full lives and sharing their messages of hope. You can email oa@ostomy.org for copies. 
  • We also released our Pediatric Ostomy Resources document with links to support organizations, educational resources and teaching/comfort items such as the Awesome Ollie Ostomy Bear.

Online our Ostomy 101 infographic, emotional concerns after ostomy surgery, and surgery-specific ostomy guides are available to caregivers, parents, teachers, and school nurses and administrators.  Our New Ostomy Patients guides are mailed for free to all who need them. Let’s work to get these into the hands of those in need.

We have decided this year to also provide space for families to come together for peer-support and education at our 7th National Conference in Philadelphia in August. The dedicated pediatrics track will feature medical professionals from the Children’s Hospital of Philadelphia. Adults who have had ostomies since childhood such as model Jearlean Taylor will also be speaking to those gathered. In addition, our conference will have a session on the critical issue of emotional healing after surgery and will provide time to develop personal connections with other families.

We also support other organizations beyond UOAA. For years many of our affiliated support groups around the country have raised funds to send children to Youth Rally. This is a wonderful camp for children who have or one day may need an ostomy or intestinal/urinary diversion. We will continue to support their important mission and others in every way we can.

Now is a time of sadness but also a time to recommit to ostomy awareness to fight harmful stigmas. We can all educate not just on Ostomy Awareness Day but in your daily lives. Tell your story in an honest way. Point people to trusted ostomy resources online, speak out against bullying and injustice. Make a personal connection to the person distraught over the prospect of ostomy surgery in a social media post. Certify as an ostomy visitor. The list goes on, and the volunteers, board and staff of UOAA are here to help you change the life of the next person in need. Seven’s parents are speaking out and do not want his death to be in vain, and neither do I.

Our deepest condolences go out to the family and friends of Seven. We can’t even imagine the heartbreak and sadness you must be feeling from this tragedy.

Suicide Prevention Resources

Ostomy Support Resources

Ostomy Camaraderie

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UOAA’s National Conference the perfect place to bond

By Karin (Newbieostomy)

Ostomies don’t discriminate, it doesn’t matter your gender, sex, sexual orientation, race, ethnicity, religious beliefs, age, attitude toward life, social status, diet, or activity level. Whoever you are and wherever you come from, if you have an ostomy, you have something in common with 725,000 to 1,000,000 other Americans and a huge number of other people across the world. If you have an ostomy, you’ve probably experienced the anxiety, fear, and stages of grief that come with such a life-changing surgery. You may have experienced feelings of isolation, loneliness and despair, concern that your life was never going to be the same and that no one could possibly understand what you’ve gone through.

Karin and friends at the last UOAA National Conference in Irvine, California in 2017. A fashion show and dancing will again close out this year’s conference in Philadelphia Aug. 6-10.

It’s true that your life might never be the same, but it can absolutely be better. And it’s true that while only you have experienced your experiences, there are a ton of other people who can empathize and identify with what you’ve gone through by relating it to the similar experiences they’ve endured (and vice versa). United Ostomy Associations of America (UOAA) National Conference offers opportunities to meet these people face to face and when that happens, magic happens.

“I like figuring things out for myself. I just always figured this as my fight and nobody else is going to do it for me, so why go to a conference. However, I realized that I actually did have some unanswered questions and more than anything I was curious to see what I could learn at the conference. I’m glad I went, because all of my questions were answered, I made some new friends who share an immediate, strong connection and I found new courage and perspective that I didn’t realize was missing from my life.” – Nathan, first timer

Nathan has had his ostomy for seven years and still had questions. Good thing he came and got them answered! His “this is my fight” attitude is not unique to him (sorry, Nathan!). It may be your fight, but you don’t have to fight alone, and I think that’s a huge thing that people realize once they attend the conference. A perfect segue into one of my favorite parts of the conference: the unbreakable, timeless, instant bonds and friendships.

“I would say the most powerful aspect of the conference, that I was not expecting going into it, was how close everyone there seemed to be. It was my first UOAA conference, so I wasn’t sure exactly what to expect, but as soon as I got there (you) came up to introduce yourself, and within a few minutes we had a group that was speaking openly about anything and everything that came to mind.”

As a fairly introverted person who can often be quite clumsy when first starting a new conversation/friendship, I found the welcoming environment of everyone I met to be the highlight for me. The instant level of understanding between everyone was pretty special.” – Collin, first timer

At the UOAA conference, it’s like a weight is lifted, allowing people to candidly talk about the emotions, struggles, and achievements they’ve experienced. These people who were strangers a moment ago have an uncanny ability to say things that make you think “Yes! That! That’s exactly how I feel!” — An instant bond is created.

“[At UOAA’s Conference] I had no idea what to expect and went in knowing no one. When I got there I was quickly met by a girl who seemed around my age and had more energy and joy then I thought was even possible when first meeting someone. Her name is Alyssa and she instantly welcomed me to the “group”. My initial thought was I have no idea who these people are and she knows all of them and I am going to be the outsider. But I was totally wrong! I was welcomed and accepted by everyone instantly and next thing I know I am sitting in the pool with them, attending meals together, and exploring the conference together.

I learned that attending this conference was crucial to understanding myself, I learned that I can be myself still even though I have an ostomy and that my ostomy doesn’t hold me back or define me. We all talked openly about our struggles, which made me realize I am to the only going through the hard times, but most importantly we talked about the good things that have happened and come from our ostomy. We also talked about things having nothing to do with having an ostomy, and personally, I think when you can do both you have met a really good friend, they want to know who you are as a person not just who you are because you have an ostomy. Meeting this group of people was one of the most valuable things that happened at the conference.

Overall this conference was a life changing experience and I would really encourage anyone who has not attended one before to go to one. I think it is super important for younger ostomates because it gives you a chance to meet other people your age and just ask questions.” –Mallory, first timer

It was no surprise to me that Nathan, Collin and Mallory all had such positive things to say about their social experiences at the conference, because I had the same experiences at my first conference and again in 2017 (where I got to meet each of them)! We come to the conference for knowledge, but we keep coming back for the camaraderie.

UOAA’s National Conference is held every two years so while you may have missed the last one in Irvine, California, registration is now open for the 7th National Conference in Philadelphia from August 6-10, 2019.

 

Aerie Model Brings National Attention to Ostomy Awareness

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Inclusive Campaign by Lingerie Retailer Puts Ostomy in the Spotlight

By Ed Pfueller, UOAA

This feels like a moment. For many in the ostomy community seeing that someone with an ostomy has been included as a model, ostomy pouch showing, in a large national retail website was groundbreaking.

The viral #AerieREAL campaign showcased a smiling ostomate alongside other body positive models living with an insulin pump, wheelchair, crutches and conditions such as fibromyalgia and cancer. The brand has long highlighted “real, authentic and unretouched women.” You can find the photos scattered over their product pages.

The model, Gaylyn Henderson, has been sharing her infectious positivity with the ostomy community for years including in a past Ostomy Awareness Day Video produced by UOAA.

Her website Gutless and Glamorous chronicles her life speaking out in support of ostomy and IBD awareness. She was selected for the campaign after submitting a video for an open call for models. Gaylyn has since become a face of the campaign in mainstream media outlets such as People, CNN and Today.

She told Today Style “Having the support of an influential brand like American Eagle to promote positive ostomy awareness has already changed lives, and I know this because of the feedback I am seeing and receiving,” “To have this opportunity is surreal! For Aerie to give me this opportunity, I’m beyond grateful and thankful they would give someone like me a shot.”

The reaction has been uplifting and positive when shared on our Facebook Page and all around the web and social media.

Shaina W This is amazing! I had an ileostomy for 2 years because of ulcerative colitis and seeing this girl model hers with no fear is so incredible. I hope this sort of thing makes it less scary for people to go through this kind of surgery when they need it. I was so scared of how having an ileostomy would change my life that I wouldn’t even consider it for a couple years even though was so sick. This girl is showing how brave and awesome she is and I hope it inspires lots of people. ?

Avigail V Fabulous! As an ostomate, I’m thrilled to see us represented!

Megan H If you read through the comments everyone has been posting in response, it has been a dialogue game changer! People were asking all sorts of questions (which is exactly what those of us promoting ostomy awareness want and need) and expressing tons of positivity! As the mom of two young kids (a 10-year-old daughter and 7-year-old son) with ostomies, I am over the moon with this campaign, even if it’s only in viral form, which for some people, is the only way they get their information.

Many people with an ostomy reading this post have probably already had a friend or family outside the ostomy community email you a news link to these photos. And that proves that it is working, and reaching the audience it needs to.

Want to keep up that momentum? Spread ostomy awareness far and wide and invite everyone you know to celebrate World Ostomy Day this year.

Study Shows Patients Need More Ostomy Information

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49% of Respondents Report they Received Inadequate Information and Communication From their Provider at the Hospital

By Leslie Riggle Miller, M.A.

My name is Leslie Miller and I am a 25-year cancer survivor and a former ostomate. I had a partial colectomy at age sixteen in 1993 resulting from a cancerous tumor attached to the rectum. I was given a colostomy, for which I had never heard of before I woke up with one! Nine-reconstructive surgeries later, I received a takedown (reversal of colostomy) in 1997. Now, three lives later I am doctoral student at the University of Oklahoma in the Department of Sociology. My primary research area is Medical Sociology.

I am excited to share with you some preliminary results of a very important study on the lives of ostomates. I began this research project in the summer of 2017 called Peoples’ Experiences With Pouches (1.) (P.E.W.P.) Study. I am interested in the difficulties ostomates face in their everyday lives, as well as the level of supportive care they receive in current medical practice. Long-term goals include improving hospital processes and nurse training with respect to ostomy care and instruction.

Background: An important component of our healthcare system is when patients and providers meet and interact together. During this interaction, patients are able to explain their ailments and tell their story, and providers are able to provide care, instruction, and diagnoses. There are positive and negative outcomes for patients based on this interaction, such as patients feeling heard, respected and cared for, but also there can be patient dissatisfaction, lack of trust, and misdiagnoses. Effective communication from providers is not only critical for all patients, but possibly more so for patients who receive a life-changing surgery, such as an ostomy.

The communication from providers when ostomates first receive their appliance is critical. Provider communication not only needs to be effective for ostomates’ ability to go home and take care of their appliance, but also it needs to be efficient given the short turnaround time in release from the hospital. As such, in my study, I examine provider communication and information when ostomates first receive their appliance.

Study Background and Results: Currently, there are 391 ostomates from the U.S. and abroad included in the study. 89% reside in the U.S. with 11% residing outside of the U.S. (predominantly from the United Kingdom and Canada).

The research questions that I have addressed are based on ostomates’ initial experiences at the hospital when they first receive their ostomy. The research question that I will address in this post is, “Do ostomates receive adequate information and communication from providers while at the hospital?” The answer to this question is “no.” I found that almost half (49%) of the ostomates felt that they received inadequate information and communication from their provider at the hospital. Below are the areas of provider care that ostomates reported that they either did not receive or an inadequacy in care that they experienced:

  1. Attitude. The provider said something that hurt the patient’s feelings or acted in a way that dissatisfied the patient, such as the provider was arrogant or rude.
  2. Ostomy Nurse. The patient wanted to see an ostomy-specific nurse sooner than they did or have follow-up appointments with an ostomy nurse but did not get to.
  3. Providers Lacked Knowledge. Patients felt that providers were not educated enough about ostomy care or were lacking in their knowledge on ostomies.
  4. Products. Patients were not told that there were other products on the market that may work better for their type of stoma or situation.
  5. Preoperative Information. Patients did not receive pre-op information or wanted more preparation before surgery.
  6. Fixing Issues. Patients were not told how to fix issues that arose once at home.
  7. Supervise Pouch Change. Patient wanted to be supervised on how to change the pouch or more practice with changing it with an ostomy nurse or more practice changing it, in general, before going home but did not get to.
  8. Wrong Information. Patients were told the wrong information from providers.
  9. Missing Information. Patients were not told all of the information that they needed or wanted on how to care for their ostomy or other options available.
  10. Lacked Support Information. Patient wanted to be told about ostomy support groups or links to support information or meet with a current ostomate, but did not receive this.
  11. Lacked Emotional Support. Patient did not receive any emotional support from their provider and they wanted to.
  12. Questions. Patients had questions that were not answered at the hospital, or they wanted to call to ask questions.
  13. Hurried/Dismissed. Patients felt like the nurse was hurried, or the patient did not receive overall basic care, making them feel as if they were dismissed.

A majority of ostomates felt that they did not receive all of the information that they wanted or needed, with lacking product information as the second highest category for inadequacy.

Additionally, I examined whether provider communication and information were better or worse for ostomates who received their ostomy years ago versus more recently. The years of ostomy surgery ranged from having had surgery in 1953 to 2017. I found that the further back in years the ostomate had their surgery, the more likely they were to report adequate information and communication. This finding leaves us with additional questions, such as whether the quality of hospital provider care has decreased over time? What is driving this decrease in adequate information and communication for ostomates? I plan on determining the answers to these questions in future studies.

Closing Remarks: The main takeaway is that there is much work to be done with regard to ostomy care when people first receive their pouch. We hope our study (and future studies on this topic) will help in this endeavor. Finally, I encourage all of you to be active participants in your medical encounters when you meet with providers. It is important to ask questions and have an open dialog with your provider. The UOAA offers vast resources for new and seasoned ostomates. In particular, the UOAA has a “patient bill of rights” so that ostomates have the tools they need to advocate for their care. Please visit https://www.ostomy.org/bill-of-rights/ to see this great resource. You are welcome to reach out to me if you have any questions

1. Miller, Leslie Riggle and B. Mitchell Peck. 2018. Peoples’ Experiences With Pouches (P.E.W.P.) Study: Examining Whether Ostomates Receive Adequate Information from Hospital Providers. Presented at the Oklahoma Sociological Association Annual Meeting, Norman, Oklahoma, November 2017

Leslie Riggle Miller, M.A. is a former ostomate and a doctoral student at the University of Oklahoma in the Department of Sociology. 

Dementia Stoma Care

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By R.S. Elvey

Caring for an ostomy can often be a frustrating and challenging experience at any age. But combine advanced age and dementia and it becomes even more of a challenge for caregivers and loved ones. According to the Population Reference Bureau, the number of Americans 65 and older will gradually increase from 15% of our population to 24% by 2050. With this growth has come a rise in existing and new ostomies combined with Alzheimer’s or other dementias. The Alzheimer’s Association of America reports in their 2017 Alzheimer’s Disease Facts and Figures report, “Of the estimated 5.5 million Americans with Alzheimer’s dementia in 2017, 5.3 million are age 65 and older.” The association predicts a half a million new cases of Alzheimer’s dementia will develop annually.

This explosive growth in new cases of dementia is putting an enormous strain on family caregivers. The Family Caregiver Alliance estimates, “44 million Americans age 18 and older provide unpaid assistance and support to older people and adults with disabilities who live in the community.” These caregivers often have little or no preparation or support in providing care for people with disabilities such as stoma care. They become frustrated and worn out. In an online forum, an anonymous writer expressed her frustration about caring for her mother’s stoma as follows, “I am TIRED of it. I need someone to take over dealing with an ostomy and ordering the correct supplies for her, etc… And I am just going to make whatever decisions seem right regarding her bladder care, as I find out more info. I really wanted to yell at her tonight and that makes me feel like a terrible, awful person. I didn’t, but I did get a little firm.”

Studies have shown that family caregivers who provide care to family members with chronic and disabling conditions are also putting themselves at risk of developing emotional and physical health problems. When seeking stoma care information, caregivers often participate in online chat rooms and forums for anecdotal advice. Additionally, visiting nurses with wound and ostomy training often make home visits and teach ostomy care. But when they leave the caregiver is often faced with ever-changing challenges as their loved one’s dementia worsens. Most often they face the challenge of not knowing when a pouch needs to be emptied, appliances being ripped off by their loved one or attempts to empty and change the appliance that miss the mark and require massive cleanups.

Realizing the complexity of stoma care and dementia and the pressure it causes to caregivers, the Colostomy Association of the United Kingdom and the Dementia Association of the United Kingdom combined to issue a twelve-page downloadable leaflet at www.dementiauk.org entitled, “Caring for a person with a stoma and dementia”. They readily recognize that not all persons with dementia will profit from learning to care for their stoma. But where it is possible a person should be encouraged to participate in their own stoma maintenance.

The leaflet’s content is based on input from health professionals who care for ostomates with dementia and a stoma. A few of the hints and tips included in the publication are:

  • “People with dementia who are actively involved in changing their bags should be encouraged to wear gloves. This reduces the risk of infection, feces under the nails and fecal spreading.”
  • “Some people with dementia who require their bag to be changed for them might resist. In these cases distraction could help. For instance, encouraging the person to clean their teeth or brush their hair during the process might be helpful. Standing the person in front of a mirror so they can focus on the task they are performing and not the bag change can help.”
  • “Bag choice is important. One-piece bags with pre-cut aperture have the advantage of being uncomplicated for both person and caregiver. Two-piece bags, where the flange can remain in situ for up to three days, helps protect the skin where frequent changes are necessary.”

Individual and professional caregivers also provide additional advice based on their experiences. Many staff who work in nursing homes put a plastic bag over the pouch so that in case of any leakage, there won’t be a much larger incident. Many persons with Alzheimer’s or other dementias either pick or rip off their pouches. To prevent this from happening, many caregivers dress their loved ones in special clothing that has no openings in the front but still gives the appearance of normal clothing. One source for this type of clothing is Buck and Buck. Their online catalogue features adaptive clothing by gender and condition. Lastly, in this smartphone age there is even an app that might help. 11 Health has created the Alfred Alert Sensor. The sensor is applied to the pouch at a point where it should be emptied. When that point is reached it connects by Bluetooth wireless technology to the Alfred Alert app on your smartphone to tell you it is time to empty. The app can also capture patient output volume over a period of time. The data is stored in a HIPAA compliant cloud server where it can be shared by medical professionals and family members.

In the final analysis, caring for a loved one with dementia is a joint effort between the person with dementia, their loved ones, their medical consultants and other professional caregivers.

Editor’s note: UOAA Affiliated Support Groups all around the United States are open to ostomy and continent diversion patients, caregivers, family, and friends.

Disaster Preparedness: Surviving a Firestorm with an Ostomy

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By Heather Brigstock MSN RN CNL

On Sunday, October 7th 2017, my family and I went to bed just like we do every night. School lunches were packed and sitting on the counter ready for the next day. A load of laundry sat in the dryer ready to be folded. Our community of almost 200,000 people was going about its usual routine. We had no idea our world was about to be turned upside down.

I felt my wife get out of bed and assumed it was morning. The faint glow of what I thought was daylight came streaming through our open window. “What time is it?” I asked. “2 a.m. and I smell smoke” she replied. I sighed and rolled over, desperate to get back to sleep. I didn’t smell anything, but she insisted on going outside to check. She quickly returned to tell me she heard explosions outside. This news lured me out of my bed and I went outside to see what she was concerned about. The sky in front of our house was a red glow and we heard explosions in the distance. The blare of sirens reassured us that the fire department was already alerted to whatever this fire was. But something didn’t feel right. Neighbors started pouring out of their houses, some packing up their cars and leaving. Our cell phones were oddly silent despite our expectation that if we were in danger, we would have gotten some kind of alert. The bells at the Catholic Church down the street started ringing at 2:30 a.m. We decided to turn on the radio and see if there was any information about where this fire was. The explosions were getting much closer and the red glow in the sky was growing. Within a minute of listening to the radio, we learned that our town was burning down around us. Flames were surrounding our town on three sides and moving at a speed of over 200 feet per second. Cell towers were overwhelmed so none of the calls we made to alert our friends would go through. The hour that followed was a chaotic blur that is etched in our minds forever. We pulled the kids out of bed and told them to grab anything that could not be replaced. The four of us frantically ran around the house grabbing family heirlooms, photos and packing overnight bags. We crated our three cats and put our fire safe containing important documents in the car. Adrenaline was coursing through us, propelling us to grab everything that could possibly fit in our cars. We had no idea where we were fleeing, so we packed some of the emergency food and water that I always keep on hand. My fourteen-year-old was sobbing, looking for her favorite childhood blanket. My mind kept jumping from being ultra-focused to going blank. I couldn’t remember where basic things were and I kept coming back to the same thought: how did this happen?

The hours, days and two weeks that followed were a painful mix of emotional trauma, sleep deprivation and extreme stress. The National Guard and first responders from all over the country and even Canada, rolled into town. Pictures of the devastation dominated my social media newsfeed. My friend’s homes burned to the ground, with many getting out with only the pajamas on their backs. Hundreds of people were unaccounted for. For two full weeks the fires raged; the wind would shift and flames would change direction, threatening different neighborhoods. Night brought a sinking feeling since the darkness hampered the firefighting efforts, and seemed to carry with it a fear of the unknown. Two out of our three hospitals were evacuated and closed, with flames licking their walls and patients in gowns loaded onto buses. Thousands of people were living in shelters, sleeping in their cars and tent camping in parking lots. The collective grief in our community hung in the air, almost as thick as the toxic smoke that burned our throats. Entire portions of our city were destroyed.

My family and I evacuated to my parent’s house, 30 miles north of Santa Rosa. A couple of days after the fire started, I began getting messages and texts from nurses. People with ostomies were living in the shelters and they had no time to pack their supplies when they evacuated. Since hospitals were contaminated and closed, getting supplies from them was not an option. I alerted UOAA of the issue as I quickly started organizing an effort to gather donated supplies from manufacturers. Living through that experience taught me many things about disaster preparation as someone living with an ostomy.

Before the Disaster

*Prepare now-don’t wait! We have a false sense of security when we think that disasters won’t happen in our town. I never thought a wildfire would rage through my city. Preparing properly could not only save your valuables and ostomy supplies, it could save your life.

*Make a go-bag-A go-bag is a bag that is packed at all times, in an easily accessed place that you can grab as you run out the door in the event of an evacuation. It should contain extra ostomy supplies and necessary medications in addition to important documents. According to FEMA, you should pack your go bag with enough supplies for 3 days. This includes food, water, flashlights etc. Visit ready.gov to see a complete list of recommended items for your go bag. During the fires, we were evacuated for two weeks but many of my friends were evacuated for four weeks, so plan your ostomy supplies accordingly.

*Make lists and assign tasks-Have a family meeting and decide who is responsible for what in an emergency. Instead of everyone running around frantically, each person would have a list of tasks. One person should be in charge of medical supplies and medications. Make a list of family heirlooms/irreplaceable items and where they are located. Don’t forget laptops or thumb drives if that is where photos are stored.

*Make a communication plan- During emergencies, cell towers can be overwhelmed and calls will often drop. In our situation, texts would send but since it was the middle of the night, people outside our area were sleeping and never got our frantic messages. Afterward, we discovered that most cell phones have a way to allow texts/calls to alert from certain numbers even if the phone is on silent. For example, if my phone is on silent for the night but my mom calls me, my phone will ring because it is now set so that her number overrides the silent setting. Learn about the features your phone has for emergencies. Also designate a meeting place outside the area so that if there is a rushed evacuation and your family is separated, you know where to meet each other.

*Keep emergency supplies together-We discovered that all of the emergency supplies I had carefully gathered were not located in the most efficient places. I had food and water in the garage but our emergency radio and first aid kit were out in the shed. I had purchased N-95 face masks but I couldn’t remember where they were. Having the items isn’t enough, they need to be located in a place where they are fast and easy to access. The same rule applies for ostomy supplies-keep them together in a place that is accessible.

*Plan on extra water if you have an ostomy-For emergency preparedness, the Red Cross recommends planning for ½ gallon of water per person per day. However, that is for the average person. If you require more water due to your ostomy or an underlying medical condition, plan on more. You may want to purchase fluids that are enriched with electrolytes to prevent dehydration.

*Keep gas in your car and cash in your wallet- During most disasters, one of the first things that happens is everyone rushes to get gas on their way out of town. Gas stations quickly ran out of gas during the fire. Credit card machines also went down in many locations so cash was the only way to pay for gas. In this era of electronics and technology, always have a backup plan.

*Take pictures- Go through your home and take pictures of each room. This will serve as proof for your insurance company of what you own, and it will also remind you of what you own so you can claim your losses. Take a photo of your medical supplies as well. Store these pictures in more than one place; I recommend keeping them digitally on your phone and hard copies in your go bag.

*Know your insurance policy- Dust off that policy and read it. Know what coverage you have, and make sure you have enough coverage. If you are a renter, strongly consider purchasing renters insurance. If you rent and do not have renters insurance, you can lose everything.

During the Disaster

*You are not replaceable! First and foremost, do not take unnecessary risks to save material items. Your safety is more important than anything else.

*Communicate your needs- If you find yourself in a situation where you don’t have the medical supplies or medications you need, don’t wait until you run out to tell someone you need help. Shelters usually have volunteer nurses/medical staff on site. Talk to them and any other organizations who are on site to let them know you need help. It takes time to get supplies and medication arranged so giving medical staff a heads up before you run out is best. Use UOAA’s list of Emergency Supply Resources or contact a local support group in the area you have been evacuated to if you need help locating supplies.

*Know your rights- If you live in a federally declared disaster area, you are entitled to replacement prescriptions and medical supplies. Call your insurance company to find out what you need to do to replace what you lost. If you are covered by Medicare, information regarding replacing lost medical supplies in a disaster can be found on their website www.medicare.gov or call 1-800-MEDICARE.

*Register with Red Cross and FEMA- If you are impacted by a disaster, the first step in accessing assistance is to register with these organizations so they know you are among the affected.

The Aftermath

*Recognize the impact of trauma- Once the disaster is over, the news trucks leave town and the rest of the world goes back to their normal routine. In the impacted community, the devastation of what occurred remains and nothing is the same. Almost 5,000 homes were lost in my community. I have friends that are still displaced over 2 months later. Entire sections of town are gone and we drive by them every day. We drive by places where we know some of the 45 people died. Trees are frozen in time, charred but forever arched in the wind gusts from that night. The smell of smoke still lingers in certain areas. Toxic ash still kicks up into the air. Rows of chimneys are the only thing that remains in many neighborhoods. Several schools burned down along with many businesses, taking those jobs with them. Housing is extremely difficult if not impossible to find. People are still living in their cars and camping in parking lots. The people who lost homes are of course grappling with overwhelming trauma, but the trauma also impacts anyone who lived through that night. Driving through flames and watching your friends’ homes burn down are not things that are easy to forget. Once I knew our home was going to survive, the survivor’s guilt crept in. Recognize what you’ve been through and seek out professional support if you need it.

On behalf of Sonoma County CA, thank you to every first responder who came to help us fight this devastating fire. Thank you for fighting flames at the walls of our hospitals and thank you for saving the thousands of homes you were able to save.

For more information on how to prepare for a disaster, visit www.redcross.org , www.fema.gov and www.ready.gov