Finding Confidence and Rocking Your Own Style with an Ostomy

By Tricia Hottenstein

I was packing to head out on a short vacation to Atlantic City and had all my outfits ready in my brand new suitcase. But when I went to pack my swimsuit, I started thinking about walking around at a hotel pool with my ostomy bag sticking out. Something about a hotel pool as opposed to just walking on the beach made me uneasy. I figure I don’t know the people on the beach and they’ll never see me again. But in a hotel for several days? Those people would recognize me. They’d see me dressed up for a nice dinner and know that underneath all that jewelry and makeup, there was a person with an ostomy bag glued to their stomach. A person who earlier in the day had a wet ostomy bag sticking out between their swimsuit pieces. And let’s be honest. A wet ostomy bag is a revealing ostomy bag. There’s no questioning what’s hiding inside of it. Something about that wasn’t okay with me.

Generally speaking, I feel pretty confident about my ostomy. It saved my life and I went from a love-hate relationship with it, to a genuine love of it, to more of a state of ignorance that it even exists. I’m not shy about telling people my situation and I will often show it to people who ask questions. But when it comes to swimsuits, the struggle has been a little more mental. I’ve previously tried one-piece suits and I hate them. I hate the way they pull on my bag when they get wet, the way they stick to every crevice of my body, the way I constantly check to make sure my bag isn’t leaking the second it starts to puff up. I tried bikini styles. My body is not made for a bikini, and the more often I wore it, the more sure of this I was. And then, hallelujah! The high-waisted trend hit stores, and I found a happy medium. A high-waisted bottom to cover most of my bag while still allowing it to breathe, and a cute colorful top that would hopefully draw attention away from the bag peeking out from my bottoms.

I love that I didn’t need to strip a whole wet swimsuit off in order to empty my bag, and I could easily flip it out after the pool to dry it off (which is a necessity in order to keep my sensitive skin from getting angry). The high waist also gave multiple coverage options and I could choose when and how my bag would be displayed. I could tuck it into the bottoms and feel secure, or leave it out over top of the suit if need be. I chose to secure my bag slightly flipped up inside the bottoms with just the top sticking out. Now this I could rock. And I did. But around complete strangers who would be seeing me over and over again, while never actually talking to me to understand who I was and what I’ve been through? It bothered me.

I bought a pretty cover-up. I tried on several new suits, but none worked the wonders I’d hoped they would. I even considered stopping on the way to the shore to keep trying. And then the lights of Atlantic City sparkled before me, and the tropical drinks and palm trees were calling me from the pool. So I went for it. I wore the cover-up and walked to the pool. Of course, I got stuck with several people in the elevator and noticed their eyes glancing down, and my fidgeting was more than noticeable.

I walked in the pool room and found a chair in the corner. I ordered a drink, hopped in the hot tub, and looked around. And I noticed every single other female in there looking as insecure as me. Ladies with towels draped around them the second they were out of the water. Women with tee shirts instead of swimsuits. Some just sitting on the outskirts, partially hidden by palm trees, in regular clothing. And suddenly I was okay. Forget this bag on my stomach. Every single person has something about them they don’t always love. I’ve got stretch marks I don’t worry about, and plenty of extra flab that doesn’t bother me. But for some reason I was getting caught up over this little protrusion on my stomach; a scar of a war I fought hard against and finally won. And I love this thing!

I was honestly upset with myself over the few days for the waver in my self-confidence. I got out of the hot tub, walked around to the pool, and held my head up a whole lot higher. And everyone who’s eyes glanced downward? They looked at me genuinely, some smiled. Because people who rock their scars in public have already changed perceptions. Chronic illness is becoming less and less of a taboo subject. We’re shaking the world by the shoulders. And THAT is beautiful.

Tricia Hottenstein blogs about life as a mother and living with an ostomy at stomama.com

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.

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

Skin Hydration Beauty Tips for Living with an Ileostomy

BY ELLYN MANTELL

As a self-avowed makeup and skin care junkie, I strongly believe that looking good is greatly related to feeling good. In fact, makeup and attention to my skin has helped me to get through the years of misery that led to my eventual ileostomy four years ago. As I reflect back, I remember asking my husband to search my handbag for lip gloss when visiting me in the hospital with peritonitis, as soon as I was brought into my room post-surgeries and the like. As soon as I felt well enough to walk around my house, I was applying my skin care regimen and blush, so everyone knew I was fighting my way back. My suitcase, always at the ready for another surgery, contained my stash of the perfect lip color to brighten my pale face for visitors, including my physicians making early morning rounds. Somewhere along the way, I recognized that my ability to heal had a great deal to do with the colorful smile I could put on my face!

It is my belief that although we ostomates can live a very full and fulfilling life, some things will just take a little extra attention, and looking our best may be one of those areas. With that in mind, I am planning on contributing information about beauty and fashion, and have named my blog/post/column Beauty and the Ostomy! Look for it in the next Phoenix Ostomy Magazine. In our case, the ostomy is not “the beast” but the beautiful incarnation of our body to heal itself and our spirit, and our appreciation of our stomas is parallel to Belle’s appreciation for her Beast!

What does an ostomy do to our system that impacts our facial appearance, you may be wondering? I believe that our loss of fluids, particularly for ileostomates, is major, so we need to talk about moisture and hydration. Although I am always looking for new products to rejuvenate and enhance the aging skin, I am very aware that all ostomates need to be mindful of how to get well-needed moisture and hydration into the skin, regardless of our age.

From childhood, my skin has always been on the dry side, and I accepted that reality into adulthood. But a very lovely aesthetician informed me that with proper treatment, I could have much healthier skin, since skin that holds moisture, has more of a chance of fighting illness. The glow of healthy skin reveals a canvas ready to be painted or just admired by itself. Whether valid or not, I became determined to make some important changes, and I truly believe good skin care yields results, and that is wonderful!

How Do We Absorb this Very Valuable and Sometimes Unattainable Moisture?

Like anything worth doing, there are steps to absorbing moisture. First, we must drink lots of fluids, primarily water. Many beverages do not add hydration, and may even leach hydration from our bodies. Some believe coffee, tea and soft drinks are culprits. I believe, however, that in moderation, they are fine, as long as lots of water is added to the daily diet. I love hot water, with or without lemon, and drink it all day, along with cold water, with or without lemon. UOAA’s Diet & Nutrition Guide even has recipes for hydration drinks and more ostomate specific information. You may be interested to know that fatigue is lessened, especially midday, by binging on water, rather than a fattening treat.

In caring for our skin, ostomates should use a gentle cleanser most nights, but 2-3 times a week, an exfoliant is a great addition to the routine. The exfoliant can be chemical (vitamin c or acids) or natural, such as grainy or mealy. The skin will glow and the new soft skin will let you know your skin is ready to receive moisture!

Serums are a vehicle of introducing treatment to the skin, and can add vitamins, minerals, usable acids, etc. Every day I read more and more about the addition of serums to beauty regimens, and since they are light and easy to apply, I use them morning and night.

Next, we need to use moisturizing products, and there is a myriad from which to choose. Lotions are lightweight, and wonderful for younger skin, which requires less hydration and may be producing much-needed oils, whereas creams are recommended for the aging skin.

Lastly, sunscreen every day, and oh, by the way, sunscreen, even when it is cloudy! The debates go on about what is the appropriate designated number of SPF (Sun Protection Factor) but my sources tell me 30-70 is best, taking into consideration that any less than 30 isn’t worth the product, and any higher number than 70 is just loading on more chemicals. And if we are in the sun for a long period of time, we should reapply as the day goes on. Be sure to wash off sunscreen and all makeup before bed, apply a night cream for optimal hydration…and let your skin breathe and rebuild during sleep!

(editor’s note: Peristomal skin issues are a whole different issue beyond beauty regiments and critical to medical wellbeing the link above has more information on that topic.)

Please write to me at ellynmantell@aol.com with any beauty and fashion questions you have. I am very interested in what interests YOU!

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.

Our Ostomy Gives Us Power!

Ostomy Visitor talks clothing and embracing life

By Ellyn Mantell

As president of our Ostomy Support Group in Summit, New Jersey, I have met many future ostomates over the years since I have had mine, and we have met in various places, depending upon their health, etc. The one that stands out in my mind is a meeting at a shopping mall a few weeks prior to her ostomy, with Carol, a woman who wanted not only to see the stoma for herself but to understand how it would fit into her life. She loves clothes, as do I, and was frightened she would need not only to purchase a new wardrobe but to change her style of dress.

The best way to show my stoma to her was to go into a fitting room in a store. We brought in some clothes that were of interest to her, and I proceeded to try them on, demonstrating how my stoma (Lily, as I have named her) would fit neatly and snugly under the clothing. I was reminded that as soon as I had my ostomy four years ago, I gave away all of my belts and fitted pants. I was certain I would never wear them again, despite being told that wasn’t true. To the contrary, I saw pictures of great looking women with ostomies online in tight jeans with belted waists. It was just too hard to imagine myself wearing belts and jeans with a pouch, and since these women were not in front of me, I couldn’t ask them “how do they manipulate their appliance to be comfortable and secure?”

Knowing it would have been invaluable to me to actually see an abdomen in clothing, I wanted Carol to have the proper introduction to dealing with her wardrobe. We laughed as I told her of my quest to replace my jeans and belts over the years – since I have learned I can wear almost anything! In truth, my “go-to” outfit is most frequently leggings and tunics, dresses and full-legged pants with a tank, covered by cropped tops. I am what is known as “funky and fashion-forward dressing,” as I learned when I was the fashion trainer for Macy’s years ago, and happily, my style hasn’t had to change due to Lily, who requires a high-output pouch that is so long, and I am so short, that it rests on my thigh!

Wide-eyed, but a little more able to envision her own “Lily,” Carol and I left and grabbed some tea at the nearest Starbucks. We sat and talked about the changes she anticipated and feared, and then she asked me what I really, very truthfully, feel about being an ostomate? Without missing a beat, I very simply said POWERFUL! I told her that as I look around at the many people shopping, I know I have a secret, and that secret is that I am strong, a survivor, and I can help others. Knowing that gives me the most positive feeling, and I am grateful, and want to share it!

I have checked on and even visited Carol as she recovered from her surgeries – since there were a few. Sadly, there is no straight line for any of us, and depending upon the reason for the ostomy, recovery can have many twists and turns. My own led me to need to spend weeks in the hospital and then a rehab facility. But she is improving daily and gaining back her strength and determination. I know she will join our support group or another closer to her home. I also know that before too long, she, too, will be accomplishing her goal of like me, being trained to become an Ostomy Visitor…to meet with and help others learn how to cope with their ostomy, and how POWERFUL they truly are, as well!

 

From the board room to construction, to long shifts in a hospital, people with living with an ostomy (colostomy, ileostomy, urostomy, ect.) work every job imaginable.  Embracing a “new normal” in life after ostomy surgery is key to living an active life, and that daily norm means going back to work.

According to the American Society of Colon and Rectal Surgeons once a person has recovered from surgery your ostomy should not limit your return to work. When you return depends on your individual recovery, ease of pouch management and how physical your job is (due to the increased risk of hernia).

Whether to tell your employer or co-workers is a personal choice depending on your unique work situation, but some feel it comes in handy if you require frequent breaks or other accommodations. Remember your co-workers will likely not realize you have an ostomy unless you tell them. With some preparation you’ll soon be confident in the workplace, and for many, feeling in better health than before surgery.

Here are a few tips from the UOAA Facebook community and Advocacy Network.

  1. Be Prepared:  In the case of a possible leak have a complete change of your ostomy supplies as well as a change of clothes you can bring to the bathroom. “Pack in a backpack, zippered tote, or small duffle bag that you can store in your desk drawer or locker” –Jane Ashley-publishing/author
  2. Know Your Rights: You have legal rights under the American Disabilities Act prohibiting employment-based discrimination. Workplace complaints to UOAA are rare but it can still occur. “My coworkers all knew, especially of the trials and tribulations pre-op. But still, there was hostility and harassment at times.” Jacque- Retired Government.
  3. Dispose/Empty Your Pouch Properly: Investigate the best restroom/changing facilities to empty or change your pouch. Consider the use of pouch or ostomy type deodorants. “My purse contains a 1-ounce bottle of Poo-Pourri, a Tide pen, a lubricating deodorant sachet, and baby wipes.” Margie, Academia.
  4. Find the Best Clothing for Your Job: Consider loose clothing if sitting for long hours or a stoma belt if you have an active job with lots of bending. A skin barrier may be helpful if you perspire on the job. “I wear a hernia belt”- Megan-Nursing
  5. Don’t Stress Stoma Noise: If your stoma decides to speak up at the next meeting relax, you may be the only one who notices “All bodies make sounds” Penny- Construction
  6. Hydrate: “Stay on top of your fluid intake. Don’t get distracted and have it result in an ER visit.” Heather Brigstock-Nursing
  7. Find Support: Know that you are not alone. UOAA has about 300 affiliated support groups around the United States that offeradvice, information and support.

Wish some preparation and patience you’ll soon be confident in the workplace, and for many, feeling in better health than before surgery.

Basic Tips for Changing your Ostomy Appliance

 

By Wendy Lueder

 

If you feel overwhelmed by changing your appliance, please know that your feelings of anxiety will diminish over time. I know it can be difficult at first but it will become more routine with practice. Knowing just what you’re going to do can be helpful so here are some basic guidelines that you may wish to use.

  1. To start, wash your hands!
  2. Set out your equipment within easy reach on your bathroom countertop. You will need: an old bath towel on the floor and Kleenex tissues (without any lotion!) to catch any unwanted output while changing; plastic bags for clean-up; a washcloth if you don’t shower; clean bath towel; pencil and stoma measuring guide; scissors or x-acto knife if you don’t use the new “moldable” skin barrier wafers; a skin barrier wafer; Stomahesive or HolliHesive paste or product such as Eakin Cohesive Seals (preferred by this writer) a new pouch; a tail closure if you use a drainable pouch that doesn’t have the built-in Velcro closure ; hair dryer and finally, a swivel make-up mirror.
  3. Empty your pouch as normal. DO NOT rinse your pouch out when emptying. This only reduces adhesion. If you get this advice, ignore it. Rinsing out pouches is an obsolete suggestion that is totally bothersome and no longer valid for modern ostomy equipment. Empty your pouch while sitting comfortably and normally on the toilet. Put some toilet paper in the bowl first to avoid any splashing. If you use a tail clip, carry an extra one with you in case you accidentally flush yours down the toilet
  4. While holding a corner of the tape that holds your appliance to your body, gently push your skin in toward your body to remove the appliance. Pushing your skin inward is far less harsh on it than if you pull the appliance off and away. Try it and feel the difference. You only need to use an adhesive remover if: A) you have worn the skin barrier wafer a very short time and the adhesion is still very strong and/or B) your skin is irritated or tender and can be easily damaged. I personally prefer the spray adhesive removers as they leave less residue. However, I only use them if I have worn the barrier for less than two days between changes.
  5. Put the old pouch, wafer and other waste (not the tail clip!) into a plastic bag for disposal. Sealable sandwich bags work great. My favorite product is Ostaway x-bag which is a black, opaque, leak-proof, odor-proof zip-lock bag made just for this purpose. See www.bagitaway.com or call 1-800-774-6097 (Mon-Fri 9 a.m. to 5 p.m. Eastern).
  6. Clean the skin around the stoma with a washcloth and warm water or by getting into the shower and using your hands. Be gentle. Do not use scented or cream soaps as they will diminish adhesion of your skin barrier. Any waste coming out of the stoma will merely wash down the drain.
  7. Pat your skin dry with Kleenex and for best results use a hair-dryer on low setting to complete the job. The cleaner and dryer your skin is the better your skin barrier will adhere.

Measure your stoma with a measuring guide (usually supplied in the box with your skin barrier wafers) using the make-up mirror placed on the countertop to get a better look. This is especially important if your surgery is recent as your stoma will become smaller over a period of months.

For all Skin Barriers except StomaHesive Wafers measure right up next to the stoma. For StomaHesive Wafers add an eighth of an inch space between the stoma and the wafer hole. Only this brand of wafer is “stiff” and could damage your stoma if it is too close. All other types of skin barrier wafers are more flexible and won’t damage the stoma if placed right up next to it. If your stoma is oval take two measurements, one each of the larger and smaller diameters.

  1. Trace the correct size and shape onto the back of the wafer with the starter hole in the middle. Cut out the hole either with your scissors or more easily by using an x-acto knife.

There are new moldable skin barrier wafers that you do not need to cut but merely manipulate to create the correct size opening. This is especially helpful if your stoma is oval and is highly recommended by this writer. Follow the manufacturer’s directions to create the perfect size opening for your unique stoma.

  1. If you use paste, peel the paper from the wafer and apply the paste only by the width of the tubes opening around the cut circle in the wafer. Allow alcohol to evaporate for approximately thirty seconds. Unfortunately paste is poorly named. Paste is really merely caulking and has no adhesive property.

If greater protection is needed than paste can afford (such as for ileostomates who have a caustic output), try using an Eakin Cohesive Seal or similar product instead of paste. these seals have the consistency of silly putty, and lasts far longer and will not wash away from heavy output.

Small dabs of paste or small pieces of Eakin Seals are great to fill any dimples in your skin that you may have. The flatter the surface of your skin around the stoma, the better the seal. Do fill in those dimples if you have them.

  1. While leaning slightly backwards to smooth out your skin, remove paper backing from the skin barrier and apply it slowly and carefully over the stoma. Use the magnifying side of your mirror to see that you are correctly setting it in place. Remove the paper backing from the surrounding tape and smooth it out on your skin being careful not to create any wrinkles as they may latter dig into your skin.
  2. If you use a two-piece system, snap the new pouch onto the wafer. Never tug down on the appliance to see if it is secure. Instead, feel with your finger all around the “Tupperware” closure to make sure the pouch and wafer are as close to each other as can be. If you detect any space, push the pouch toward your body until you feel it close the gap. You may hear a series of clicks as you apply the pouch.
  3. If you use a tail clip, apply now. Hold your appliance in place with your hand for a full five minutes to ensure a secure seal. All skin adhesives are more effective if held in place after first application as the heat from your hand improves adhesion. If your stoma is flush to your skin, use a skin barrier wafer with built-in convexity. The convexity will gently push the skin toward your body around the stoma giving it some extra length. When the stoma thus protrudes a bit more, its output goes more easily into the pouch. The new adhesives and skin barrier wafers stay put well for days.

Some bleeding is normal when touching your stoma, but report any unusual color, size, shape, or bleeding to your Ostomy nurse. Try different products. Call your Ostomy nurse or ostomy supply companies and ask for free samples. You may have to shop around to find products that leave you feeling comfortable and secure. You should be no more aware of your appliance than you are of your underwear. Always follow any special instructions provided by your health care professional as they know your specific situation better than any general guidelines an article such as this could provide

If your abdomen is very hairy, you may want to gently shave off the hair under your skin barrier wafer. Be careful not to cut or damage your skin.

These suggestions are gleaned from years of helping ostomates cope and are just that, suggestions. They come from over thirty-five years of experience, but are in fact just the input from a layperson. I’m not a nurse, I’m an ostomate. Your healthcare professionals always know best and you need to follow their advice, not mine.
Bottom line: Your appliance should be comfortable, stay on for at least a few days between changes, odor-free (not odor resistant) and leak extremely rarely. If not, go see an ostomy nurse and change your routine until you find the products that work well for you. Best of all, studies done at Duke University verify that the longer you’ve been an ostomate, the better it gets. Problems do diminish with time and experience. You should be able to forget you’re an ostomate and get on with doing the things you really enjoy. There’s no stopping you.

Additional Tips for ileostomates only:

Try changing first thing in the morning when output is at its slowest. Many ileostomates report that eating four to five marshmallows right before changing stops all output from the stoma for several minutes. I personally have found this to be true. As marshmallows are pure sugar, please don’t try this if you’re a diabetic.
As the output for ileostomies is far more caustic than for colostomates and urostomates, don’t put off changing your appliance when needed. There are two indications you need to change, one is “itching” and the other is a “burning” sensation. If you itch, it may be merely dehydration. Drink a glass of water. If the itching continues, you need to change. If you feel a burning sensation on the skin around the stoma, change as soon as possible. The output from your ileostomy is caustic and will damage your skin. Avoid the vicious cycle of damaged skin -> poor adhesion due to damaged skin -> leakage -> damaged skin.