Speak Out on World Ostomy Day

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By Jeanine Gleba, UOAA Advocacy Manager

“Awareness is the greatest agent for change.” ~ Eckhart Tolle

It’s coming!  As I write this there are 50 days 9 hours and 41 minutes until World Ostomy Day on October 6, 2018!  (Current Countdown) Then you will have to wait another 3 years for the International Ostomy Association to sponsor it again.  UOAA is thrilled to join our national efforts with the rest of the world and we want ostomates across the country to join us from big cities to small town America to make this day a pretty big deal.

In both my professional and personal life as an “advocate” I know first-hand that the key to success for any advocacy cause is awareness. Simply put the more people talking about something the more attention it will attract (e.g., a video gone viral or hot issue on the political radar in the media). Unless you are personally affected not only do most people not even know what an ostomy is but they certainly don’t know how much this surgery can change lives for the better. A prime example of this is a person suffering for years with an inflammatory bowel disease such as ulcerative colitis who finally finds relief by having ostomy surgery. This is why it is crucial that we heighten consciousness around the globe to increase understanding of “ostomy”, remove feelings of embarrassment and eliminate fears so that ultimately when all other medical treatment options have failed more people will choose this surgery. Then more lives will be improved and saved.

I’m particularly excited this year’s theme is “Speaking Out Changes Lives”. What better way to raise awareness than to “speak out”?   What better way to improve lives and make concerns known such as when a person has received poor quality of care, than to “speak out?” What better way to advocate for a dedicated national day of ostomy awareness than to “speak out”?   

Do you know how to raise awareness? Think of the causes that you support. Look around you.  Everywhere you turn there are reminders of one cause or another keeping issues alive and on people’s minds (e.g., Breast cancer started out as a simple pink ribbon symbol in 1982 and has now turned into a global sensation with all of the pink anything and everything that is available for purchase to raise research funds. Not to mention all that is done during the month of October and all year long for breast cancer awareness).  There are many ways to raise awareness such as having a car bumper sticker or the widely popular Twibbons, but the best and simplest way is just….you got it…. “speaking out”. The growth of ostomy awareness is realized each time a person living with an ostomy shares his/her story. Each and every one of us has a powerful voice and together we can make a big impact.  Learn more ways to raise awareness in UOAA’s toolkit “Be an Ostomy Champion”.

Get Involved

Here’s some of the ways UOAA is raising awareness for World Ostomy Day: 

  • Expanding our annual family-friendly Run for Resilience Ostomy 5k events across the country now in nine states (AL, AZ, ID, MI, NC, NJ, OR, PA or TN) as well as well as a worldwide Virtual Run/Walk. Hundreds of people will attend these events and even more will witness the event as people run the course.
  • Promoting ostomy awareness year-round with a free “Ask Me: What is an Ostomy?” sticker for all those that register for the Virtual Run/Walk.  This sticker can be put on cars, laptop covers, water bottles or any where you want to raise awareness. Help UOAA teach the world what an ostomy is!  
  • Encouraging more people to use our sample proclamation to get one passed in towns, counties and states across the country officially declaring Ostomy Awareness Day. In addition, NJ Congressman Donald Payne, Jr. has agreed to be the Primary Sponsor of a Congressional Resolution nationally recognizing Ostomy Awareness Day for the first-time ever!
  • Sharing our special logo for World Ostomy Day and the use of dedicated hashtags for social media recognition: #WorldOstomyDay2018 and #OstomyDayUSA.
  • Coordinating our very own 1st Annual Virtual Day on the Hill competition to raise ostomy awareness with lawmakers!
  • Producing a very motivating “Speak Out” Campaign call to action video!

Please keep visiting our dedicated and frequently updated webpage to find more ways you can get involved in the celebration this year!  And make a mental note to yourself that it doesn’t end on October 6th. Awareness can happen every day. We’re counting on to you to make it happen.

Know Your Ostomy

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Expect More – Take Control of Your Health Care

Part 2 in Series

By Joanna Burgess-Stocks, BSN, RN, CWOCN, UOAA Advocacy Chair

Good communication skills are the key to problem-solving.  This became clear to me when, as an ostomy nurse, I found myself having to unravel what people were trying to tell me when facing a problem.  I realized I was speaking a medical language that was not always understood, and my patients were trying to work with that language the best that they could, but miscommunication often happened, resulting in unresolved problems. One day it dawned on me that I needed to do a better job in teaching my patients ostomy language. Sometimes a change just takes a moment of truth.

My moment of truth!

I was excited and determined as a new ostomy nurse to make a difference in people’s lives and knew that I could, after having lived with an ostomy most of my life; since age three.  My responsibilities in the hospital setting were to teach people how to care for their ostomy after surgery. I would make sure my patient or their caregiver knew the basics of ostomy care. On the last day before discharge home, I would focus on how to order supplies.  I would then say my goodbyes with a simple “call me if you need me”. I realize now, as an experienced nurse, that this was only part of the story. It was not until I became involved with my local UOAA Affiliated Support Group (ASG) and started following online support groups that I became aware of the challenges people experience once they are home and face ostomy care on their own. My moment of truth came one day as I was lying on my bed with my laptop reading story after story on the online support group Inspire of people and their loved ones trying to problem solve skin and stoma issues and difficulties with trying to keep a pouch in place. There I was, an ostomate and nurse who had every resource available to me yet all I could do was offer words of encouragement and some basic information. I realized that I could not adequately offer advice because it was very hard for people to describe what was happening and I didn’t always understand what they were describing to me and sometimes they did not understand what I was saying to them.    

Changing my Approach

I started to pay closer attention to what my own patients would say to me when they called with a problem and realized that they too had difficulty describing the issues. I had taken for granted that ostomy medical language was second nature to me, but not for them.

Because the patients were not able to tell me the problems they had with managing their ostomies in a way that I could use, I was often left with more questions. I could only offer limited answers and my efforts to help often felt useless. Being a medical professional for most of my life, I felt humbled realizing that medical language can be difficult for people to understand.  Unless you have worked in or been around hospitals, you might not have learned medical words. It is mind-boggling just to know the words to use for ostomies. To get the true feeling, it would be as if I were suddenly thrown into having to build my own house and had to understand all the words involved with building. I would be lost!

The challenges that ostomates face at home motivated me to start an outpatient ostomy clinic connected with my hospital so that my community of people had somewhere to go for help.  After seeing patients in the clinic I learned that many ostomates had no idea how to describe the problems they were having with their stoma or skin. Some did not know the type of ostomy they had, some could not describe their stoma and most had difficulty describing their skin problems other than using the words:  red, painful and hurting.

Gaining Wisdom:

What I have found over the years, is that the better my patients are able to describe the problems they are having with their ostomy, the more I am able to help them come to a successful solution; whereby, they are able to help themselves. These patients also feel more confident to explore different pouch choices on their own because they have the confidence to tell vendors ( ostomy supply companies) their own stoma and skin problems. Thus the right pouching  system “match” is more likely to happen, resulting in a positive result and better quality of life. I now know that just as important as teaching someone ostomy care, it is also important to teach the language that is a part of that care.

As you read these tips on ostomy language, be patient with yourself. It takes anywhere from 6-12 months to speak the language of ostomies according to some ostomy nurses!

Know your Ostomy Type (and whether it is permanent or temporary)

Know How to Describe your Stoma:

“Stoma” an opening created by ostomy surgery.
It is located on the abdomen and is red/dark pink in color, moist and shiny.
Some describe it as looking like a rosebud.

Take a look at your stoma. In front of a mirror, look at how the stoma changes when you are standing still, twisting from side to side, bending over, sitting, and lying down. Once you have done that, you can ask yourself the following questions about your stoma:

What Does the Skin Around your Stoma Look Like:

  • Flat and no wrinkles/creasing
  • Skin folds/wrinkles  (describe where and when you see wrinkles and folds; for example “ when I sit I have creasing on the right and left side of the stoma”)

Shape:

  • Round
  • Oval
  • Irregular
  • Smaller at the top, larger at the bottom
  • Larger at the top, smaller at the bottom
  • Has one opening
  • Has two openings

Color:

  • Red
  • Pink
  • Brown (not normal)
  • Black (not normal)
  • Maroon, Blue/Purple (not normal)

Stoma Position and Level:

  • Below skin level ( in a skin fold or sunken)
  • Flush to skin level/at skin level
  • Above skin level

Know your Stoma Location:

  • Right side of the abdomen above the belly button
  • Right side of the abdomen below the belly button
  • Left side of the abdomen above the level of the belly button
  • Left side of the abdomen below the level of the belly button
  • In or near a skin crease
  • In or near a skin fold
  • On a flat skin surface

Know your Stoma size:

  • Use measuring guide to match the size
  • Round stomas are measured by diameter
  • Oval stomas are measured by widest length and width
  • Learn how to measure your stoma here

Know where the stool or urine comes out of the stoma ( this is called the “os” meaning mouth or opening)

  • On the top of the stoma and centrally located
  • Located on the side of the stoma (left or right)
  • Located on the underside of the stoma
  • Located level with skin

Know How to Describe your Effluent (output from stoma)

For a stoma that drains feces/stool

  • Color: brown, green, black, red and black
  • Consistency: thin and watery, loose, thick, soft, formed, pasty
  • Odor: no odor, mild odor, offensive
  • Amount: High output and loose, High output and thick/formed, no output, low output
  • Number of times a day you empty the pouch.

For a stoma that drains urine:

  • Color: Clear, cloudy, amber, straw, blood tinged
  • Odor: no odor, musty, fishy, fecal ( stool smell)
  • Volume: No output, low output, high output
  • Substances other than fluid (e.g., grit, crystals, mucus).

Know Your Peristomal Skin ( the skin around the stoma):

  • The skin is intact, not raw – no skin breakdown
  • The skin has sores – blisters, or looks like a blister without the skin on top
  • The skin is discolored (red, pink, purple, bruised)
  • Skin sensation (normal, itching, burning, painful)

Normal peristomal skin does not have sores, discoloration, pain, itching or burning.

Final Thoughts on Ostomy “Lingo”

Learning a new language can be difficult. My hope is that you will take the time to understand and know ostomy language so that you too will be an expert. The more you know and understand, the better you will be at expressing your needs and be able to find the best pouching system for you. Use this Know Your Ostomy Checklist the next time you need to talk about your ostomy, and see how much it helps!  

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. 

Rena Münster’s Story

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After eight years of not responding to western pharmaceuticals, at the age of thirty, I found myself facing a colectomy. While I had anxiety about the ostomy surgery and fear of the unknown, my overall emotion was relief. This surgery was hopefully going to be the end of many years of pain and suffering. Thanks to the encouraging words of other ostomates I was wheeled into surgery with a smile on my face, excited about what the future would hold for me–I saw endless possibility!
The support I received from the local ostomy support group along with many wonderful bloggers inspired me to be vocal about my story. I started my own blog and instagram account to raise awareness about life with an ostomy and provide support to fellow ostomates. There is so much value in people who are facing an adversity to come together and lift each other up.
I’ve been on a rollercoaster ride with my permanent ileostomy (I named her Rita) for the past two years. Life is full of ups and downs, however, I am proud to say that Rita and I have traveled to Hawaii to snorkel in the ocean and hike through the cliffs of the Napali coast. We wore a bikini on the beaches of Maryland’s eastern shore, danced our way through weddings, explored new foods at restaurants with friends and worked our way through a graduate degree in acupuncture!
Philosopher Wayne Dyer once said, “When we change the way we look at things, the things we look at change.”  When diagnosed with ulcerative colitis it was easy to fall into a mode of feeling isolated and alone during periods of flares. I forgot what life was like as an energetic and healthy young professional. The expectation of a healthy life and the unfair reality caused a lot of unnecessary suffering. What I learned is that we all have the option to dance with life. Crisis can open a door to a new opportunity, a loss can be seen as a gain, and a breakdown can turn into a breakthrough.

You can follow Rena’s story on Instagram @myintestinalfortitude or her blog www.myintestinalfortitude.com

Find Your Voice (10 Questions to Help You Speak Up)

Expect More – Take Control of Your Health Care

Part 1 in Series

By UOAA Advocacy Committee

This first article is about finding your voice as you take the initiative to speak up, or act on your own behalf, to encourage change that will bring improvements in your quality of ostomy care, and ultimately, your quality of life.

We are all unique individuals and regardless of having a medical condition such as an ostomy some people by nature are outgoing while others are more naturally shy and timid. Some people are overly confident while others lack self-esteem. We are who we are; however, when it comes to your health and well-being, if your gut is telling you “this isn’t normal” or something is wrong or you just don’t plain “get it”, don’t be afraid to speak up. There is power in your words. Yes, this can be easier said than done for many, but realize there is no shame in asking for help. It can be a challenge to balance being assertive while not being overly demanding.

Ask yourself the question – do you think you are capable of producing a change? How do you create change in your life? For example, if you are experiencing pain and sores on the skin around your stoma – are you accepting this as normal and trying the best you can to manage it on your own because you don’t want to bother anyone? In contrast, are you someone that would call your doctor, seek resources to find help and not accept this as normal? It is good to try to be self-sufficient but if you are still suffering and in pain then a positive change has not happened. What can you do to strengthen your voice, and be a participant in your self care? The belief that you can make a change is called self-efficacy. It is a little different than being self-confident in that you truly believe a change will happen and you won’t stop seeking help until that change has happened.

Some people also fear that by speaking up and questioning their healthcare providers, that they will find them annoying, stupid, needy or unlikeable. Healthcare professionals are held to high medical standards and they want to help their patients. They understand that this is new to you and that you are trying to understand your medical condition. They also need you to understand your treatment plan, so that it can be a success. There is absolutely no reason to feel embarrassed. Remember, if you do not ask your questions or express your concerns, you remain uninformed and that is a fearful place to be. You want things to get better not stay the same.

FIND YOUR VOICE: 10 Questions To Ask Yourself

When it comes to medical situations, many people become tongue-tied or have difficulty expressing themselves. UOAA recognizes that it is not enough to just tell ostomates to self-advocate, but rather we need to provide you with the tools to do so. Self-advocating can be a positive experience.

Below are 10 questions and simple solutions that will help you find your voice:

1) Are you nervous, anxious or confused about your medical condition?

People who do not feel confident in their understanding of their medical condition feel fearful. Once they are educated about their condition, they are more confident to speak up. The information in this blog post and UOAA’s ostomy information and educational resources can help you gain confidence and if you are just starting your ostomy journey it can give you a sense of control in a time of uncertainty. “Knowledge is power.” ~ Sir Francis Bacon

2) Do you just defer to the expertise of medical professionals or do you participate in decision making?

Many people assume they have no role in their care. They just leave it in the professionals’ hands. In reality, you play a very important role. Medical “lingo” is very new to people – people who don’t understand it do not feel confident in speaking up and feel intimidated by medical professionals. Most people are afraid to say – I don’t understand what you are saying. Make a list of what you do and don’t understand to generate the proper questions to ask.

3) Do you think you are the only one in the world having these issues and concerns?

People who feel alone do not speak up – once they find others such as with a support group – they feel more confident and less isolated and alone. Here you can get a role model or peer to guide you along the way. It’s comforting and insightful to hear from people who share similar experiences. Chinese proverb: “To know the road ahead, ask those coming back.”

4) Do you have low self-esteem and sometimes feel that your life doesn’t matter?

People with low self-esteem tend to not speak up. They tend to remain silent or let other people do the speaking for them. When someone has low self-esteem, it is hard to see his/her own worth or recognize that his/her opinion matters. Self-esteem is further affected by a life-altering/body altering illness such as ostomy surgery. Take steps to feel better about yourself or if needed, seek counseling.

5) How can advocating for your healthcare needs (or other things in your life) really change your life in a positive way?

Consider the impact on your life. Make a list of pros and cons for speaking up. If the pros outweigh the cons, it may be worth it to speak up and improve your life in a positive way.

6) Do you have a concern or health issue with your ostomy, but your doctor or nurse pushes it aside and tells you not to worry about it?

Are you the type of person if you are worried about something, but your doctor doesn’t mention it, then you assume it must not be a concern so you remain silent? If you are unsure or disagree and it is affecting your quality of life, then get a second opinion by another expert. Listen to your gut. It’s important for you to feel safe and secure in your own body, and you certainly don’t want the problem to get worse (or it might truly be nothing to worry about!). It always feels better to have your concerns addressed in a way that makes you feel that you have been heard.

7) Do you find yourself rushed or brushed off when you are at an appointment with a medical provider?

We all agree that medical professionals are busy and are often running behind schedule. The good news is that often this occurs because other patients were asking questions during their appointment! They were speaking up! You deserve their time too. Write down your questions before you arrive and be sure to take out your list and go over every single question you have. Remind yourself – this is your visit, this is about YOU, not the doctor. Also, the next time you call to make your appointment tell the office staff that you will need some extra time to discuss all of your concerns and evaluate your situation especially if it is a complicated issue.

8) Do you feel like you are just another ostomy patient in a long assembly line and feel that there is no real care for YOU, a unique and individual person?

If you consistently leave the office feeling worse than when you entered and with unanswered questions, then it is time to consider finding a new provider and seeing someone else who will make you feel comfortable to ask questions and take the time to listen and respond. This holds true even if it’s a referred provider who is supposedly the “best” in the field. It’s important to have a good relationship with your provider. Quality ostomy healthcare is a team effort and communication is critical.

9) Have you ever looked back and kicked yourself for not saying something?

It’s better to speak up, than have regrets later, especially when it might be something as serious as your health and well-being. Your doctor has many other patients and concerns on his/her plate so don’t run the risk that they will remember everything about you or what was discussed at your last visit together. You know your health history. You are the person experiencing the symptoms or whatever the issue is. It is absolutely your place to express your concerns.

10) Do you sometimes draw a blank or choke under pressure and miss out on speaking up?

Keep an ongoing list of your questions and concerns prior to meeting with your medical professional. Practice the conversation that you want to have by role-playing with a family member or friend acting as your doctor or nurse. Practicing will help instill confidence in what you want to say. You can also decrease stress by bringing your questions with you and reading them from your paper. That way you are sure that nothing is forgotten. “Asking for what you need, what you want, and what you’re worth requires practice. So practice self-love and start asking.” ~ AnneMarie Houghtailing

FIND YOUR VOICE: Expect More Examples of when you or your Advocate should speak up!

IF YOU CAN’T FIND YOUR VOICE; BE SURE TO GET AN ADVOCATE

We realize that having major surgery can be overwhelming. Be sure to find someone who can help you along the way. Sometimes you might “lose your voice” especially after surgery, from medications, or just being overwhelmed. Your advocate should be someone close to you, whom you can share your deepest fears and concerns with, and HAS A VOICE, and can speak up for you when you can’t. Your advocate can ask questions for you or simply listen and take detailed notes so you can recall and understand later.

SPEAK UP!

If English is not your primary language, you have a right to an interpreter. All hospitals are now required to have interpreter services either in-person or via web connections provided for you.

In conclusion, we know that ostomy healthcare is not perfect and inconsistent in our country. When it comes to your healthcare, don’t be shy. You must harness the power of your own voice and share your concerns, desires, and opinions; because if you don’t, who will? Remember that you matter! You are important! Self-advocacy isn’t a “one and done” deal. It’s an ongoing process from before you have your surgery thru the ongoing continuum of care of your ostomy or continent diversion.

Speak Up! Ostomy and Continent Diversion Patient Advocacy Resources:

(Note – Although we focus on finding your voice with regards to healthcare, you can use these self-advocacy tips in other areas of your life as well.)

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

No Stress Air Travel with an Ostomy

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Traveling through airports can make anybody nervous as security lines get longer and wait times increase. For some people living with an ostomy, air travel can cause further anxiety.

Universal pat-downs performed by Transportation Security Administration (TSA) agents and uncertainty surrounding procedures at the screening checkpoint can add to an already stressful experience.

Luckily, United Ostomy Associations of America (UOAA) is working on your behalf to help make your next airport security screening run as smoothly as possible. But you need to be prepared beyond just packing the right supplies and emptying your pouch before a flight. With our tips and latest guidance from the TSA, you’ll be empowered with the knowledge to help make your next travel experience a positive one.

“We have been working with the TSA for over three years now and have established an excellent working relationship,” says George Salamy UOAA’s TSA Liaison and representative on the Coalition. In fact, at a past TSA Disability and Multicultural Conference, OAA was the recipient of a Community Participation Award.  “Recognition by the TSA with this award illustrates how we are helping our constituents, the ostomates, who want to travel with little inconvenience,” George says.

One way we do this is by participating in conference calls where we provide input from the UOAA traveler perspective. The system is a work-in-progress and complaints about invasive searches outside of protocol, though rare, still occur.

Communication is critical in navigating the security process. Inform the TSA officer that you have an ostomy pouch before the screening process begins. For discretion, you may provide the officer with the TSA notification card or a medical document describing an ostomy. Expect to be screened without having to empty or expose the ostomy through the advanced imaging technology, metal detector, or a pat-down. If your ostomy pouch is subject to the additional screening you’ll be asked to conduct a self pat-down of the ostomy pouch outside of your clothing, followed by a test of your hands for any trace of explosives.

You may also undergo a standard pat-down of areas that will not include the ostomy pouch. Remember it is normal protocol for agents to request a pat-down of any travelers. Be aware however that at any point during the process you can ask for a Supervisory TSA Officer, and a private area for the screening as well as be accompanied by your travel companion.

As an ostomy traveler, if an incident occurs that differentiates from the protocol (such as being asked to undress the area around your ostomy) know that this is not allowed. It is important to report this to the TSA and follow-up with UOAA to ensure appropriate and immediate action is taken. Upon review of security footage corrective action may be taken in the form of additional training and/or discussions with appropriate personnel at the airport to help prevent similar incidents from happening again.

Before your next trip view our tips for ostomy travelers. We will continue to educate and communicate with the TSA with the goal of making travel easier for all those traveling with an ostomy. No people living with an ostomy should ever be discouraged from travel whether for work, to see family and friends, a vacation or a journey around the world.

What’s in a Name?

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Ostomate or Person Living with an Ostomy?

“Labels are for soup cans.” ~ Grist Mill Road by Christopher Yates

by Jeanine Gleba, UOAA Advocacy Manager with Keagan Lynggard, UOAA Advocacy Committee Member

The UOAA Advocacy Committee produces many educational resources and self-advocacy tools for the benefit of you; you being a person living with an ostomy or continent diversion. Our dilemma has been what to call you or how to refer to you within the context of advocating, educating, and supporting, as you are the subject of what we write about. Sometimes we call you “a person living with an ostomy or continent diversion”. That takes nine words to describe one aspect of your life and this becomes very difficult and cumbersome to write over and over again in a single advocacy or educational document. There is however, a definite trend on social media and with online bloggers to use the word “ostomate” when referring to you, and the community of people who live with an ostomy.

As a national organization that supports all people living with an ostomy it’s crucial that we are sensitive and choose our words wisely so that they are acceptable to our community. Ostomy surgery is already a delicate topic that is often associated with “bathroom talk”, a topic that already has enough of its own societal taboos. Recently our Committee set out to gather survey data to hear from YOU, the people that our work impacts to identify the more acceptable or best term to use in our advocacy written materials and presentations concerning ostomy awareness and education.

Is this a label?

Our surveys certainly sparked an interesting debate. Many responders assumed that we wanted to “label” our community in a derogatory way versus our intention which was to simply look for a word to identify our medical demographic and represent the people we impact. As I read the comments from our responders and thought about what we were looking for, it made me wonder if this is how “labels” are born? Do they arise when people search for a simple and easy to use term to describe something? What happens when a label sticks and there is a negative stigma or insensitivity to those with a particular condition? As I pondered these questions and continued to review further comments, I realized that many people do prefer a simple word (or label) to identify their medical condition. It helps some people feel a sense of belonging and unity within a unique group. So I’m not sure what we would even call the word: a “term” or a “name” or a “label”? It’s also important to stress that although we were looking for a simpler non-offensive term it wasn’t meant to completely and irrevocably replace a “person living with an ostomy”. In fact, the definition of the word “ostomate” is simply a person who has undergone an ostomy.

And the preferred term is…

Here are the results of our surveys:

Total Votes: 331
34% (113 votes) Person with an ostomy
61% (201 votes) Ostomate
5% (17 votes) Other

191 Votes via Facebook
37% (71 votes) Person with an Ostomy
63% (120 votes) Ostomate

23 Votes via Twitter
48% (11 votes) Person with an ostomy
52% (12) Ostomate

117 Responses via Survey Monkey
27% (31 votes) Person with an Ostomy
59% (69 votes) Ostomate
14% (17 votes) Other

Does age affect preference?

In the Survey Monkey survey we asked a few more questions to gain a better understanding of the responders, such as gender, age, or whether their ostomy was temporary or permanent. 98% of the responders had a permanent ostomy with over 80% being older than 55 years of age. Of this older population 62% were female and 38% were male. Of interest the males were 50-50 in their selection of preferred term. Whereas, only 17% of females preferred “person with living with an ostomy”. If this had been a science experiment, and I had to develop an initial hypothesis, given the social trends on the internet, I would have predicted that the term “ostomate” was going to be more favorable for the younger generation. Our results proved this wrong!

 

We also provided an opportunity for people to list a specific “other” term that they would prefer and only three had a specific response like “Packin’ a Pouch”. For the majority of those who selected “other” they did not list another term but rather said it was actually ok to use “ostomate” or they didn’t care, which in turn would increase the # of who prefer “ostomate”. Nineteen percent (3/16 responses) did not want any term.

For the question “For those who do not like the term ostomate, why?” these were some of the reasons why:

· Because I am more than my ostomy or my ostomy doesn’t define me
· Labels what/who you are
· People won’t know what ostomate means or it always needs more explanation

Until you walk in someone else’s shoes…

Here’s what people were saying:

“I don’t want to be defined by my ostomy. Giving me a title/name defines me. I am a mother, a wife, a nurse, and a friend. Those things define me. Not my ostomy. While my ostomy is a part of my life, it does not define my life. PLEASE get away from the term “ostomate.”

“I prefer to focus on the positive – I am LIVING with an ostomy. Ostomate sounds harsh.”

“I also like “Person living with an ostomy”, but Ostomate is easier. What I really don’t like is use of the word “bag” which many, many people, ostomates, nurses and doctors continue to use. It’s very upsetting!” (Check out the Vegan Ostomy blog on this topic.)

“This term is commonly thought to be someone with a bowel ostomy. Mine is an urostomy. I’d like to see a term implies all ostomies.”

“Living with an ostomy sounds better to me and denotes the fact the ostomy gives a person additional life.”

“It labels people (similar to how one would not want to be referred to as the amputee, the diabetic, the bipolar, etc.)”

“I am not a “joiner” and do not plan on meeting others with similar conditions.”

Of notable interest 16/55 people answered this question with a response that they actually like the term ostomate.

In general our overall analysis found that although we did receive a few “neither” or “either” comments followed with the pattern of commentary along the lines of “my ostomy does not define me”, the vast majority preferred the term “ostomate”. We also received comments that support the idea that those who prefer the term ostomate are those familiar with the literal definition of ostomate, those who are involved/active within the ostomy community, or those who have really embraced this aspect of their life. This sense of community was evident in the survey question showing over 70% of responders belong to some sort of support community either online or an ostomy support group.

There is no right answer.

In conclusion, the Advocacy Committee has decided that in most cases we will continue to use the terminology “person living with an ostomy”, which is less “defining”, in our materials; however, given the results of the survey we will also now more freely and confidently include the term “ostomate” in order to simplify a document or when the term is more suitable for our advocacy purposes. I believe in our society of political correctness, we will never be able to please everyone, but we should always aspire to do our best, be respectful of all and try not to stir the pot by adding salt to wounds that are in the process of healing.

Thank you again to all those who participated in the survey and contributed to helping us gather this valuable information.

Quality of Care Resource at the Centers for Medicare and Medicaid Services (CMS)

By Jeanine Gleba, UOAA Advocacy Manager

The overall goal of the UOAA Patient Bill of Rights (PBOR) initiative is to ensure high quality of care for people who had or will have ostomy or continent diversion surgery. To accomplish this it’s important that patients and families actively participate in patient health care.

According to CMS an integral part of the U.S. Department of Health and Human Services’ (HHS) National Quality Strategy is the CMS Quality Improvement Organization (QIO) Program. It is one of the largest federal programs dedicated to improving health quality at the community level.

Under the QIO program there are two Beneficiary and Family Centered Care-QIOs (BFCC-QIOs) who help Medicare beneficiaries and their families exercise their right to high-quality healthcare. The two BFCC-QIOs are KEPRO and Livanta and they serve all fifty states. BFCC-QIO services are free-of-charge to Medicare beneficiaries.

Depending on where you live (Locate your BFCC-QIO) they are available to help Medicare beneficiaries and their families or caregivers with questions or concerns such as:

• Am I ready to be discharged from the hospital?
• Should I be receiving needed skilled services such as physical therapy, occupational therapy, from a home health agency, skilled nursing facility, or comprehensive outpatient rehabilitation facility? (Care from a certified ostomy nurse is a skilled service.)
• I’m concerned about the quality of care I received from my hospital, doctor, nurse or others.
Examples of quality of care concerns that pertain to our PBOR include but are not limited to:
• Experiencing a change in condition that was not treated (such as skin infection around stoma)
• Receiving inadequate discharge instructions (such as inadequate individual instruction in ostomy care, including the demonstration of emptying and changing pouch or no instruction on how to order ostomy supplies when you leave the hospital)

*Why should Medicare Beneficiaries contact their BFCC-QIO with concerns?

First, BFCC-QIOs can help when you have a concern about the quality of the medical care you are receiving from a healthcare facility (e.g. hospital, nursing home, or home health agency) or professional. You can also file a formal Medicare complaint through your BFCC-QIO.

Furthermore, according to CMS, when Medicare beneficiaries share their concerns with their BFCC-QIO, they help identify how the health care system can better meet the needs of other patients. Beneficiary experiences, both good and bad, give the QIO Program the perspective to identify opportunities for improvement, develop solutions that address the real needs of patients, and inspire action by health professionals. This is what we are working towards achieving with our PBOR initiative. This is a resource to help the UOAA community make this happen.

Last, Medicare beneficiaries have the right to file an appeal through their BFCC-QIO, if they disagree with a health care provider’s decision to discharge them from the hospital or discontinue services, or when they have a concern about the quality of the medical care they received from a health care professional or facility.

*When and who should Medicare Beneficiaries contact?

A Medicare beneficiary can call 1-800-MEDICARE or your Local State Health Insurance Assistance Program (SHIP) if he or she:

• Has general questions about Medicare coverage;
• Needs clarification on how to enroll in Medicare;
• Wishes to discuss billing issues.

A beneficiary can contact their BFCC-QIO if he or she:

• Needs to discuss the quality of care received;
• Wants to file a formal quality of care complaint; or
• Needs help to understand his or her Medicare rights.

While BFCC-QIOs are the primary point of contact for Medicare beneficiaries and their families, when necessary, quality of care complaints can also still be made by calling 1-800-MEDICARE.

For those interested in learning more about what to do if you have a concern about the care you received while on Medicare, please refer to this FAQs page produced by CMS.

Be involved in your healthcare and if you are a Medicare beneficiary, take advantage of this resource to self-advocate and ensure a better outcome for yourself.

*Source qioprogram.org

The Snowball Effect of Ostomy Advocacy

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Taking a stand for better ostomy healthcare

By Jeanine Gleba, UOAA Advocacy Manager

United Ostomy Associations of America (UOAA) is an organization that empowers people to get the care they deserve to live life to the fullest. The poor quality of ostomy care received by some in our community limits those lifestyle choices. For people living in the United States with an ostomy or continent diversion healthcare delivery is unequal. A person with an ostomy should be treated as seriously as someone living with diabetes. At hospital discharge, it would not be safe or acceptable for an insulin-dependent diabetic to be incapable of giving themselves an injection, self-managing their diet and blood sugars, and obtaining their supplies. It is not safe or acceptable for anyone living with an ostomy to be discharged without knowing how to prevent dehydration and not have access to care and supplies to live a healthy active life. We can’t let the words “quality healthcare” become meaningless buzzwords for those facing this life-saving/ life-changing surgery. The time has come to take a stand.

To get the ball rolling UOAA recently revised the Ostomy and Continent Diversion Patient Bill of Rights (PBOR), which has become the foundation to stand on, to SPEAK UP. The PBOR states the details of the care people with an ostomy should expect to receive initially and during their lifetime. It calls for healthcare professionals who provide care to people with ostomies, to be educated in the specialty, and to observe the standards of care. It is a guide for patients and families to be active partners in their care, to know what is reasonable to expect so they can collaborate in their care and get the outcomes they deserve.

UOAA has taken the lead to generate this change by promoting the new PBOR and its use. We are excited by the response and support we are receiving and know we can continue to make big strides.

So the little PBOR “snowball” rolling down the hill is gaining momentum and is poised to impact the barriers for people who live with ostomies and continent diversions in America. Be a part of the change, download the PBOR and the Top Ten Ways to use it. Step up and spread the word.