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

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.

Six WOC Nurses that Inspire the Ostomy Community

By Ed Pfueller, UOAA

There is no doubt the world would be a better place with more wound, ostomy and continence (WOC) nurses. For many, WOC nurses are the first sign of hope after a life-changing surgery. The right nurse can provide confidence when there is doubt, and comfort when there is pain or fear.

2017 Recipient of the UOAA WOC Nurse of the Year Award Frances Wilson with President Susan Burns.

April 15-21, 2018 marks WOC Nurse Appreciation Week and this year is also the 50th Anniversary of the Wound, Ostomy and Continence Nurses Society™ (WOCN®). For those of us at UOAA these nurses are so much more than medical professionals. They are our affiliated support group leaders, advocacy champions, cheerleaders, advisors, friends, national leaders, speakers, stoma clinic volunteers, event organizers, fundraisers and so much more.

It is one of our great joys (but also one of our biggest challenges) to select just one recipient of our WOC Nurse of the Year Award. Unsung and unrecognized nurses can be found in every corner of our national network of support.

Prepare to be inspired by these testimonials from our Affiliated Support Groups who nominated this year’s amazing group of nurses. Feel free to share with us in the comments a special nurse who has helped you on your journey and learn a bit about the people behind the credentials.

Anne Marie Knudsen
South Bay Ostomy Support Group in California

Anne has served as the group’s program coordinator 330 months (or 30 years and 11 months the nominators say.) She encourages doctors to utilize ostomy visitors to make a difference from day one. She provides free home visits to members and encourages all to attend meetings.

“She is always available, a mentor, has a compassionate heart, loves all ostomates and is an inspiration. She gives free time to the group and uses her own money to present gifts of appreciation to speakers. She will visit all who are desperate for care at no charge. I have the greatest respect for Ms. Knudsen she is an angel for sure!!”

Gina Day
Ostomy Support Group of the Poconos in Pennsylvania

Gina founded the group last year bringing much-needed ostomy support to the region. Gina provides educational programs for the group and heavily promotes the group in her area by hosting a Run for Resilience Walk Ostomy 5k walk, appearing in local media stories and last year even got the mayor to declare Ostomy Awareness Day.

“Her dedication, persistence and passion brought an awareness to our community that it so greatly deserves. Her positive personality and motivational disposition is an inspiration for our members. Gina Day connects with group members in an indescribably sincere manner. The support group slogan is “You will never be alone” and Gina sees to it that people are not. Gina fills the void and disconnect that some patients feel after they leave the hospital through her support and forums to share stories. Her outstanding expertise has benefited those living with an ostomy in our area greatly.”

Charlotte Popovich
Ostomy Association of Metro Denver

Charlotte is a tireless volunteer with a deep connection to the doctors and ostomates in her community judging by the pages of praise that accompany her nomination. They say she has an instinct for knowing when patients need that extra push of confidence to take matters into their own hands.

“Her strongest attribute is her total commitment to the ostomy community’s needs. It is amazing her attention to our new members’ medical and emotional needs as well as being available to them 24/7 at a moment’s notice. Her rate of referrals from surgeons is unmatched. After working all day, she voluntarily attends all evening support group meetings and does question and answer sessions to address patient concerns.”

And in a Letter from Dr. Sandosh Nandi

“The dedication to her craft is unparalleled. She is diligent, caring, knowledgeable and thorough. She has helped so many patients and the praises they sing go on and on. She not only teaches patients about their ostomy but helps them with social and mental hurdles as well. She takes calls on vacation and stops by someone’s house for an emergency change in the middle of the night. She is nothing short of amazing. Big heart and a very caring tough love approach.”

Lara Leininger
Triangle Area Ostomy Association in North Carolina

Lara is known as her group’s cheerleader in her role as a WOCN support nurse.  She supports guest speakers and is available to participants for one on one questions after formal meetings. She also makes her contact information available should questions arise from participants between monthly meetings. She supports the health and wellness of her group through her commitment to living a healthy lifestyle through exercise and helps others to believe that an ostomy does and should not limit a person’s life in any way.

“Lara, in her many years of working as a WOCN for the University of North Carolina Hospital, has shown love, compassion, care and kindness to her many ostomy patients and has shown ongoing support for her WOCN colleagues in her community. Lara has been so devoted to the ostomy community that in 2014 she co-founded the Wanna War One Ostomy Awareness 5K in Durham, NC. This empowering event now known as the Run For Resilience Ostomy 5K, supports the educational and advocacy programs of the UOAA. The event will be celebrating its fifth anniversary on October 2018 and will represent nine locations across the country. Lara has also been a dynamic volunteer and speaker at two UOAA national conferences and has shared the story of caring for her mother, an ostomate, through the Phoenix Magazine, Spring issue 2017. As stated in this article from her colleagues “Lara is a person and nurse of great care. She fills with emotion when talking about her love for her patients. When her mom became ill and it was evident that she was facing ostomy surgery, Lara dove deep into the journey with her mom. This is what Lara does and who she is”.

Angela Ladner
Gulfport Mississippi Ostomy Support Group

As part of the first UOAA support group in Mississippi Angela secured the location at Memorial Hospital for groups and arranges for local home health, pharmacies and manufacturer participation with the group.

“She encourages patients to participate in the group’s activities mentally and emotionally with body image issues. She is a liaison with physicians to encourage participation and outreach. She is caring and supportive of her population. Willing to assist in the needs of the patient and the family. She helps the indigent population with resources for supplies. She also coordinated an effort to assist flood victims in Houston with ostomy supplies. She is respected by patients, colleagues, and families.”

Kathryn Baxter
United Ostomy Support Group of Orange County NY

Kathy has been a been a devoted liaison, exceptional WOC/ET Nurse for the group for over 25 years. The group counts on her expertise and knowledgeable background as a PA in the busy NYC Hospital Mt.
Sinai.

“Kathy” as we all know her has always from the very first time she came to a meeting
has been interested in the complete rehabilitation of every ostomate. She finds ways often to
resolve the most difficult ostomy problems for those who think they will never have a resolution.
Kathryn finds the time to help in programming and acquisition of products for the Chapter.
If it weren’t for her support over the years this Chapter would cease to exist. We are
grateful for all the time and talent she has brought to us clinical evaluations, information support on newest equipment and surgeries, caring and advising meeting participants on what is available medically as well as psychologically.

United Ostomy Associations of America (UOAA) is presenting the 2018 WOC Nurse of the Year Award at the 2018 WOCN Annual Conference in Philadelphia.

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.

 

March is Colorectal Cancer Awareness Month

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UOAA Supports the Survivors of Colorectal Cancer

 

Colorectal cancer is the third most common cancer diagnosis among men and women combined in the United States. There is currently no cure, but it’s 90 percent treatable if caught early with a screening. American Cancer Society estimates there will be over 140,000 new cases and over 50,000 deaths this year.

Recent research has confirmed what many have long suspected–more young people are dying of colorectal cancer. Ten percent of all new colorectal cancer patients are under the age of 50 and are too often misdiagnosed.

People with other bowel diseases 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.

If you need to have lifesaving ostomy surgery because of colorectal cancer or any other reason, education and peer-support is available from the approximately 300 affiliated support groups of United Ostomy Associations of America. Ostomy patients of all ages and their families, friends and caregivers are welcome. Find a meeting near you today. You are not alone.

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.

Tips for a Successful Recovery after Ostomy Surgery

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By Diana Gallagher, MS, RN, CWOCN, CFCN – Facilitator for the NWA Ostomy Support Group

updated 11/3/2022

For many, ostomy surgery is lifesaving but their initial feelings on living life with an ostomy are negative. For individuals with years of unresolved incontinence or inflammatory bowel disease, however, life after surgery is frequently viewed as a positive improvement. For them, an ostomy is the promise of a return to a normal life.

As you prepare for surgery, or recover from emergency surgery, the following are important tips to help you transition into your new life and embrace living with an ostomy.

Select a surgeon with valuable experience in the type of surgery that you are facing. General surgeons as well as specialty surgeons can perform ostomy surgery. Specialty surgeons are those who have completed additional education, training, and fellowships within the specialty. These surgeons will be identified as Colorectal or Urology Surgeons. You can find a local physician through the website for the American Society of Colorectal Surgeons or by contacting the American Urological Association.

See an Ostomy Nurse. BEFORE surgery, your surgeon may refer you to a specialty nurse, like a Certified Wound Ostomy and Continence Nurse (CWOCN). If not, you will need to find a specialty nurse. This nurse will help ease your transition into living with an ostomy. Although education may be provided during your hospital stay it can be difficult to focus and remember because of anesthesia, surgical pain and stress. Your ostomy specialist will provide comprehensive education including practice pouch changes before surgery. In addition, he/she will identify and mark the best location for your ostomy. This is important because during surgery it is difficult for your surgeon to know where the waistband of your pants sits, where creases or irregularities exist and other special considerations to consider when selecting that optimal site.

Attend a United Ostomy Associations of America (UOAA) affiliated support group (ASG) meeting in your community if possible. You may think that you do not need a support group or feel that you are the type of person who does not feel comfortable in a group setting. Put those feelings aside; listening in the beginning is a good start. Join your local group, even if you don’t initially find someone your age with a similar story, there is a lot to learn. UOAA affiliated support groups are truly one of the BEST places to obtain the necessary education, helpful hints, support, and resources and many groups offer online meetings. Don’t feel that you are alone.

For more details search this website for trusted ostomy information including a New Ostomy Patient Guide, specifics on the major ostomy types, ileostomy, colostomy, urostomy and resources on topics such as diet and nutrition, sexuality emotional concerns, IBD and ostomy and much more.

FAQs

 

Determine which supplies will work best for you. Learn about the different ostomy pouching systems. In the beginning, you will most likely receive sample products from a number of companies. It is helpful to keep the 2 piece products from each manufacturer separated; wafers from one company will not necessarily snap onto a pouch from another company. The sampling program will help you try a variety of products to learn which ones work best for you.

Order your regular supplies. Once you know what you like best, an order can be placed through a distributor. There are countless distributors to choose from and depending on insurance, your supplies can be delivered monthly or every three months. The first time that you order, it is logical to order a month’s worth of supplies. As your expertise develops, you may fine-tune your list. Insurance normally pays 80% of supplies that are medically appropriate. If you have a secondary plan, the remaining 20% may be covered. Check for a list of the established limits for each product. Reorder supplies so that you are never without the supplies that you need.

Select a place to keep your ostomy supplies organized. Many people keep their basic supplies in a bathroom drawer, others buy a plastic organizer with several drawers that can be moved about. Excess supplies can be stored in a closet but regardless of where you choose to keep supplies, it is best to avoid temperature extremes and high levels of humidity.

Be prepared. In addition to the extra supplies that you keep on hand at home, always keep a small pouch with all the supplies necessary for a complete change with you. Like your other supplies, these should be kept away from temperature extremes and humidity. Hopefully, you will rarely need to make an unplanned change, but being prepared, makes most ostomates feel secure and confident. If you anticipate an occasional return to the hospital, keep a bag packed with your preferred supplies. The hospital may not have the brands that work best for you.

Promptly consult your ostomy specialist for any problems. This might be a decrease in normal wear time, a change in your stoma, or a problem with your peristomal skin. A good practice for all is to hydrate properly to avoid complications.

Recover from surgery and LIVE life to the fullest. Having an ostomy does not change who you are or what you are able to do. After recovery, work to strengthen your abdominal muscles to help prevent hernia risk and enjoy all your old activities including swimming. Every October UOAA holds the Run for Resilience Ostomy 5k where people of all ages prove living with an ostomy does not need to be limiting.

Advocate for yourself. You will find that not everyone is knowledgeable about ostomies. Educate others when possible but always be willing to advocate for yourself and others. You can also help to advocate on the national level by supporting UOAA’s advocacy program and taking part in events like Ostomy Awareness Day held on the first Saturday in October. UOAA works toward a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically, and psychologically.

Share your experience and tell your story. Your story has the power to help others as they begin their journey. Connect with others in person or online and offer to help the next person who has this life-saving surgery.

 

For updates on the latest ostomy resources,blogs, events and advocacy sign-up for UOAA’s monthly E-Newsletter or become a part of the official UOAA community with a national membership. For more information contact United Ostomy Associations of America at  info@ostomy.org or 1-800-826-0826.

Social Security Disability Benefits for Colon Cancer

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If you have been diagnosed with colon cancer and your condition makes it impossible for you to work, you might be eligible to receive Social Security disability benefits.The Social Security Administration (SSA) oversees disability programs that provide benefits to those who are unable to work, but who meet specific criteria.

Social Security Disability Insurance (SSDI) is available to those who meet the medical criteria that have been established to qualify as disabled and also have meet the past work requirements. To qualify for SSDI, you must have worked enough to earn sufficient credits and pay enough taxes. Usually, that is the equivalent of five years full-time work out of the last 10 years.

The claims process is very complicated. In addition to applying for benefits, you must make sure the SSA gets your medical records, documentation of your symptoms, any physician notes, details of your treatments and how they impacted your condition, and proof that your condition is severe enough to impact your daily living and ability to work.

While advances have been made in cancer treatment and you might have a good prognosis, you might be unable to work while undergoing treatments such as chemotherapy or radiation because they can significantly impact your ability to function leaving you nauseated and fatigued.

Before completing an application for Social Security disability, talk with your oncologist. Your oncologist should be familiar with the process and will be able to tell you whether or not he or she believes you would qualify for benefits. Your oncologist can even complete some additional paperwork in support of your claim.

When your oncologist is supportive of your disability application and provides additional documentation, and makes a written statement on your behalf and completes a residual functioning capacity (RFC) form, it can have a significant impact on your disability claim and help you get approved for monthly benefits.

Medical Qualifications and the Blue Book
There are strict guidelines involving the medical qualifications that must be met for an individual to be approved for disability benefits. The SSA uses a medical guide that is called the Blue Book. The Blue Book has different bodily systems listed with different conditions listed for each system. In order to meet the medical criteria, an individual must meet the condition requirements that apply to that condition.

If you are unable to meet those specific criteria, your condition’s symptoms might meet the criteria for specific symptoms or for another condition that is caused by the dominant health problem. Some conditions are approved for benefits solely on diagnosis of a condition but others are more challenging to prove per the SSA guidelines.

Colon cancer applications for disability fall under Section 13.18 of the Blue Book, which is for cancer of the large intestines. To be approved based on the listing, your colon cancer must:

Be a form of Adenocarcinoma AND
returned following treatment
OR
Cannot be removed by surgery
OR
Be squamous cell carcinoma cancer AND affect the anus
AND
returned following surgical removal of tumors or cancer cells
OR
Be a small-cell or oat cell carcinoma cancer
OR
Is any colon cancer that spread past the lymph nodes in the area of the cancer’s original development.

Qualifying for Disability Using an RFC
If your colon cancer doesn’t meet the medical criteria of the Blue Book, you might qualify by using the RFC. This form clearly defines your limitations and how your daily life is impacted. Your physician completes the form to show what you can and cannot do at this point. It clearly states limitations with lifting, reaching, carrying, fingering, stand, sitting, and walking. This completed form will give the disability review team or administrative law judge a clear picture of how your life has been impacted and how you are no able longer to perform work duties.

Applying for Benefits
If you are ready to apply for disability benefits, you can go online to www.SSA.gov and complete the application or call 1-800-772-1213 to schedule an appointment at your nearest SSA office to start the process in person. All forms must be completed in detail and you must have as many of your medical records as possible to support your claim. You can enlist the help of a disability attorney or advocate to help you with your claim and to improve its chances of being successful.

This article was written by the Outreach Team at Disability Benefits Help. They provide information about disability benefits and the application process. To learn more, please visit their website at http://www.disability-benefits-help.org/or by contacting them at help@ssd-help.org.

Resilience on Display at the Ostomy 5k

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Run for Resilience Ostomy 5k Expands its Reach

By Ed Pfueller, UOAA

The cause of ostomy awareness was visible on streets and trails all over the country for two Saturdays last October. People embracing life again after ostomy surgery, people still struggling with recent hospital stays, nurses, family, friends, returning participants, and local runners, were all represented. Supporters cheered as 616 people ran, walked or rolled in this year’s Run for Resilience Ostomy 5k. On Oct. 7th (Ostomy Awareness Day) and 14th, communities in Alabama, Arizona, Oregon, North Carolina, Pennsylvania, Idaho, and Tennessee celebrated the resilience of people living with an ostomy or continent diversion by raising ostomy awareness. Another 139 runners nationwide opted to run/walk “virtually” in their own communities.

The Boise Run for Resilience Ostomy 5k is a family friendly event raising ostomy awareness. Photo by: Natalie Koziuk Photography (www.nkoziukphotography.com)

Passionate local organizers, over 50 volunteers, and local and national sponsors made this year’s events possible. UOAA provided logistical support and the proceeds the non-profit organization’s national education, advocacy and support programs.

Event locations expanded again last year adding venues in Mesa/Phoenix Arizona and Cookeville, Tennessee. Located about an hour east of Nashville the Tennessee event took place on the historic streets of the Downtown, Cookeville. Runners trotted under magnolia trees and along the historic main street of town before heading to the finish. Water was handed to them by representatives from Hollister, the Platinum sponsor for the year’s events who also hosted games of corn hole outside their sponsor tent. Nashville fashion designer Manny Cuevas, known for dressing some of the biggest stars in the music industry, was inspired to run due to his own personal journey with an ostomy. He was cheered on by family and friends and accompanied on the course by a daughter. Local organizer Deborah Nelson felt particularly blessed to have Manny there because of his resilience in light of medical setbacks, and also his advocacy. “He went to the state of Tennessee to get a proclamation enacted for the state to adopt this ostomy awareness day. Not only is he an advocate for nurses and other ostomates, but he is an awesome representative,” she said while awarding him the medal in the ostomate category of the run/walk.

Manny Cuevas after the Cookeville, TN Run for Resilience Ostomy 5k

In Arizona, the first-year event had a festive atmosphere. A picnic and music inside a ramada shelter welcomed competitors returning from a stroll along the lakes in Mesa’s Red Mountain Park. Local organizer Roxanne Camp who is a double ostomate was all smiles at the event despite being discharged from the hospital just a few days earlier. Her resilience is a testament to what the Run for Resilience Ostomy 5k is really all about.

The largest event this year was again the founding 5k in Durham, North Carolina. Though the majority of the 164 runners did not have an ostomy, ostomate Collin Jarvis repeated as the overall winner. First-time participant Molly Atwater was easy to spot as she was supported by family wearing “Molly Olly Ostomy” t-shirts. “As a brand-new ostomate, the Run for Resilience was a mountaintop experience for me. To attend an event where I was surrounded by people who knew what an ostomy was – either having an ostomy themselves, supporting a loved one with an ostomy, or working as an ostomy nurse – reminded me that I belong to such a strong and supportive community. I talked with many people over the course of the run and shared my experience in my short three months as an ostomate, learning tips and tricks for dealing with daily struggles. The coolest part of the entire event was looking around and not knowing who had an ostomy and who didn’t. And with it being a 5K, that drove home the idea that there is nothing an ostomate can’t do. I walked the race this year, but I am determined to run the whole thing next year. It’s an event that I would never miss in the future.”

The event drew runners from hundreds of miles away and again took place on the scenic American Tobacco trail and featured a popular silent auction and sponsor tents. The always popular stroller division again made this truly a family affair.

A family atmosphere was also central to the 2nd annual Ostomy 5k in Boise, Idaho. Despite frigid temperatures, 151 runners suited up for the event. Children could be seen tossing golden leaves into the air as runners passed by. They got their own chance to run in a 1-mile kids fun run.
Runners in Portland, Oregon also braved the cold to run along the Milwaukie Riverfront Park in what was the third year for the event. The event also returned to Birmingham, Alabama where the weather was much more pleasant. The Birmingham Area WOC Nurses’ Association again generously agreed to host the event. This year it was moved George Ward Park in Birmingham.

You did not have to go to any of these locations to take part in a run however. Our virtual run simply means you can walk/run in any location of your choice. You can gather with a support group, friends or family. Participants walked/ran in locations from the mountains of Colorado to the shores of Nova Scotia, or even on their own treadmill. Each participant got their own race bib number and t-shirt to recognize the awareness day.

Some virtual gatherings took on a life of their own. In Stroudsburg, Pennsylvania the mayor came out to cut a ribbon and walk at an event that attracted over 50 people. Enthusiasm for the walk was generated by organizer and ostomy nurse Gina Day had recently started the first UOAA support group in the area. “The outreach I received was priceless. I met some amazing people along the way, and appreciate all the donations I received to help bring awareness to the forefront! I realized how many lives I touched, when they all showed up and walked right next to me. I can not thank UOAA enough for their guidance and support to make this event possible for our ostomates in the Pocono region!  I look forward to next year where I can provide an official 5k walk/run for ostomy awareness in our community.”

“The local organizers really are the heart and soul of what makes this event so special, and I can’t thank them enough,” says UOAA Executive Director Christine Ryan. “Our dedicated sponsors enable us to bring the ostomy awareness event to communities across the country.”

UOAA hopes to see the Ostomy 5k grow even bigger and reach more people in 2018 when the event will coincide with World Ostomy Day on Saturday, October 6th. Tentative run/walks will be held in Nashville, Southern New Jersey and Harrison Twp. Michigan . Visit www.ostomy5k.org  or follow us on Facebook for the latest 2018 event information. To be a national or local sponsor, start a fundraiser, or inquire about organizing an event in your community, contact Christine Ryan at christine.ryan@ostomy.org or 207-985-9700. A heartfelt thank you to the following 2017 National Sponsors. Platinum- Hollister, Silver- Coloplast and Bronze- Convatec, Safe n Simple, and Hy-Tape.

Herrett Family Story

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By Megan Herrett

Adequately summarizing what our family has gone through over the past almost ten years requires going back to the very beginning.  Our daughter, Maggie was three months old when we realized that she looked a little jaundiced.  Our pediatrician agreed and ran what would be the first of hundreds of tests to determine what was wrong with our baby and why her liver function tests were so elevated.  After being seen by multiple specialists here in Boise for a few months, we were referred to a doctor at Primary Children’s Medical Center in Salt Lake City in November of 2008.

Photo by: Natalie Koziuk Photography (www.nkoziukphotography.com)

When Maggie was about six or seven months old, we noticed that she was starting to scratch quite a bit.  Her arms, feet, and ears were covered in scabs and scratch marks.  This itching was a side-effect of her liver not processing bile correctly – when not processed by the liver, the bile backs up into the bloodstream and circulates back through the body, resulting in an increase number of bile salts in the body.  It is these bile salts in the bloodstream that make an individual with a liver disease very itchy.

At first, we were able to control her itching through several medications but by the time she was 12 months-old, her itching had become unbearable.  At that time, her liver was deteriorating quickly and she was exhibiting some developmental delays as a result of the incessant itching.  In a matter of weeks, she had pulled out all of her hair and she was maxed out on her medication dosages.

We were presented with the option of an ostomy-placing surgery when Maggie was just over one-year-old as an alternative to a liver transplant.  The purpose of her ostomy would be to (1) drain bile from her body to combat the itching, and (2) slow the progression of her disease by giving her liver a much-needed reprieve.

To be honest, I was devastated when I first heard the words, “ostomy bag.”  I imagined a life where Maggie would never wear a bikini or be a cheerleader or be captain of her swim team – all very big concepts when you are talking about a one-year old child.  I imagined her being bullied because she was different.  But, we needed a solution…and we needed to act quickly.

Photo by: Natalie Koziuk Photography (www.nkoziukphotography.com)

Maggie underwent ostomy surgery on October 30, 2009, and we haven’t looked back.  She is now eight-years-old and is thriving health-wise as well as academically.  Additionally, she is also excelling on a competitive gymnastics team.  And although Maggie absolutely beams on the outside, she struggles with confidence because of her ostomy pouch.  She is fiercely private and does not want any of her peers to know.  My husband and I have worked tirelessly to emphasize to her that her pouch is nothing to be ashamed of – after all, it saved her life and she would not be the person she is today without it.

In 2010, we were blessed by the birth of our son, Winston.  We soon discovered that he was plagued with the same disease and would then undergo the same surgery when he was just over one-year-old.  Although this news was devastating at the time, we have come to realize that it was a blessing in disguise.  Both of them have the same liver disease and both wear ostomy pouches – commonalities that they can rely on when the going gets tough.

I can still recall my “aha moment” though – that moment when I realized that we would not be a family that sat idly by and let her pouch be a source of shame or embarrassment for her.  Maggie was probably two years old at the time and we were in the throes of potty-training, where our previous line of attack of onesies and bib overalls to prevent her from yanking her pouch off, were no longer an option.  She was finally in a shirt and a pair of pants…and her ostomy bag was peeking out from the hemline of her shirt as we left a restaurant.  A man entering the restaurant noticed her ostomy pouch and said, “Ewwwww!  What IS that?”  Although my initial reaction was one of anger and dismay, it was then that I realized that working with her would be only one piece of the puzzle – we also needed to work with the community to help educate, support and raise awareness for those like Maggie so that the shame, fear and embarrassment would fade away to empowerment and pride.

It was this “aha moment” that led me to contact the United Ostomy Associations of America in January of 2016 about bringing their Run for Resilience Ostomy 5k to Boise.  My inquiry was met with a resounding “YES!”  We held our inaugural race on Saturday, October 8th and had over 160 people registered for the 5K and Kids’ Mile events.  We even had participants, including ostomates and ostomy nurses, drive in for the race from Spokane, Washington and Lewiston! And Hollister even donated ostomy pouches to include in our race registration bags.  If nothing else, I am hopeful that this year we laid the foundation for many successful years to come and got some ostomy-related dialogue started.  Instead of “ewww,” maybe people will say, “Oh, I know what that is and that saved their life!”

The Boise Ostomy 5k is now in its 4th year! For more information on our Run for Resilience events around the country visit www.ostomy5k.org