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What is a urostomy and how do you deal with it?

A patient who did not know what to expect walks you through the process (with photos)

By AnneMarie Finn

According to UOAA information on this website, a urostomy is “a surgically created opening in the abdominal wall through which urine passes. A urostomy may be performed when the bladder is either not functioning or has to be removed. There are several different types of surgeries, but the most common are ileal conduit and colonic conduit. Reasons for surgery include bladder cancer, spinal cord injuries, malfunction such as chronic infection of the bladder and birth defects such as spina bifida.” Great definition, but what does it mean? When I was told I would need a radical cystectomy, leading to an ileal conduit I had no clue. The following is my experience.

Because of bladder cancer, my bladder needed to be removed and a new way to pass urine created. Due to the location of the tumor, my urethra was also removed so my surgeon and I settled on an ileal conduit, a conventional urostomy. It is called ileal conduit because a piece of the ileum, or small bowel, is used to make a passage for urine to go from the kidneys and ureters out of the body. The other end is brought out through a hole in the abdomen where urine exits through a stoma (more on that shortly). It is known as an incontinent urinary diversion because you cannot control the urine. As a result, a collection bag or pouch hangs from your abdomen to catch the urine. The pouch is not visible as it is worn under your clothes. Still not clear? It wasn’t for me either.

A couple of days before surgery, I met with an ostomy nurse at the hospital where I would be receiving my surgery. She marked where the stoma would be placed. She saw how I wore my pants. She had me sit, stand, lay down, and bend over, She drew a mark with a marker about 2.5 inches to the right and 3 inches down from my navel and covered it with a waterproof dressing. This would guide the surgeon as to the optimal spot to place the stoma. The surgeon had the ultimate call on where the stoma went, depending on the surgery itself. I also met with a nurse for a pre-op appointment. They went through the typical exam and then explained the ERAS protocol to me. ERAS, Enhanced Recovery After Surgery, is used at my hospital for radical cystectomies. They no longer use a bowel prep. You drink a high carbohydrate drink in the hours prior to your surgery. They get you up walking and feed you by the day after surgery. The goal is to keep your bowels working. This reduces the length of hospital stay and the number of complications.

This is major surgery. It is considered one of the most complex cancer surgeries performed. My surgery took 7 hours. They removed the bladder, urethra, uterus, cervix, fallopian tubes, an ovary, and some lymph nodes. When I woke up, I had a bag, a large incision with more than 30 staples and a Jackson Pratt (JP) drain on my abdomen. I also had intermittent pneumatic compression (IPC) devices on my legs, my spa legs. Blood clots are a common side effect of a radical cystectomy. Because of that, I also received daily prophylaxis blood thinner shots in my belly for 30 days. I was not in a great deal of pain which was easily managed with Tylenol. I was definitely weak, but otherwise ok. I went home in 4 days, on my own with my urostomy.

The stoma is the badge of the urostomy. My stoma is about one inch in diameter. It is pretty round, It sticks out. It sometimes moves in and out. You can’t feel it. It has been described as looking like a rosebud. It is red. This is where the urine exits the body. You have no control over it. Sometimes it will also expel mucus. Some people name them. I did.
Rudolph, my red, round stoma

You use a urine collection pouch, or bag, to catch the urine. The hospital will send you home with some so you do not need to have them on hand before you get home. There are many different brands. In fact, until I found what worked best for me, I tried most of them. My pouch is about 8 inches long, 6-7 inches wide and has a 1-2 inch closable spout on the bottom. It also is a deep convex bag as my stoma does not stick out very far and it helps protect my skin. I prefer the clear bag so I can see the stoma and center it when I put it on. There are both one and two-piece bags. I have used both. One-piece pouches have the bag and a skin barrier attached. The skin barrier has adhesive, also called a flange or wafer, that sticks to your skin. There is a hole that goes over the stoma. Some are pre-cut, some are not. If not, you must cut a hole slightly bigger than your stoma before putting it on. There are also two-piece systems. The bags are separate from the skin barrier. They are attached by a Tupperware-like seal. You can leave the skin barrier on and take off the pouch.

Front and back of 1 piece, deep convex pouch

I change my pouch every 3 days. I like to remove the old pouch and take a shower with it off. I feel so free. To remove, I use an adhesive removal spray and wipes to clean the skin. I shower and wash the area around the stoma with soap and dandruff shampoo, which contains Zinc. Some people wash with a vinegar and water combo. If I change without showering, I just use plain water to rinse. After showering, I use a hairdryer on the lowest setting to dry the skin around the stoma so the wafer sticks to it. Drying your skin is important. I have some skin issues so I also use a skin barrier protective sheet, that I cut a hole to match the opening of the wafer, and a cohesive seal.

Protective Sheet with hole cut out and Cohesive Seal

Some people use powders, paste, barrier wipes, etc. I do not. It took a lot of trial and error to find what worked best for me. You need to find what works for you. One of the best ways to do this is to work with an ostomy nurse. They can help you navigate ordering and finding the best system for you.
At night, I use the urinary drainage bag they sent me home with from the hospital. For me, it works the best. There are several brands of night bags and even jugs. I put it on the floor next to my bed inside of a small wastebasket. This has been key as the drain has opened (or been left open) and the wastebasket collected the urine, preventing a rug catastrophe. I am a very active sleeper and I am not really hindered too much from my bag. I am able to sleep on my back, sides, and stomach. Don’t be afraid to sleep. People add their own tubing and tube placement strategies. Use whatever works for you. I also highly recommend a waterproof mattress pad. Mattresses are expensive. I also use the night drainage bag on long car trips. I don’t have to stop and use those disgusting public toilets. I even used it during the Avengers finale. I was probably the only person in the theater who did not have to get up to use the facilities during the movie! People were actually jealous.

Night Drainage Pouch

I honestly can’t even feel my pouch. I empty it every 1-2 hours, depending on how much I drink. Sometimes there is a “ghost” feeling where my bladder used to be making it feel like I have to pee. Ah, the good old days. It is actually a weird sensation drinking a lot and not feeling like I have to go. The bag is not noticeable under my clothes. I really do wear what I wore before surgery: jeans, sheath dresses, shorts, and bathing suits. I am still sexually active. Having gone through this experience with my wonderful caregiver, my husband, has brought us closer. Most importantly, I am cancer-free.

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Scott Steehn’s Story

Finding Hope in the Stories of Others

By Scott Steehn

All stories have a beginning, and mine is no different. It started on a cold, slate-colored February day in Erie, Pennsylvania in 1992. I was a successful standup comic who had headlined clubs and theaters in all 50 states and seven foreign countries. I was recently engaged to my soulmate, and we were making plans for a big October wedding. I was just finishing up a great week at a terrific comedy club in Erie and, as I prepared for my two shows on Saturday night, I felt like everything couldn’t have been going any better. But, in just 12 hours, none of those things would matter.

It started when I was onstage during the first show. I began having abdominal pain on my left, lower side. It wasn’t a huge pain and mainly felt like a had a fairly intense need to move my bowels. I finished up my show and made a beeline to the restroom. And…nothing happened. Nothing at all. The NEED was still there, and, in fact, it was getting worse. I, of course, had been constipated before, but this felt somehow…different.

I did my second show, but the pain was now almost unbearable. I headed back to my hotel, stopping only at a drugstore to pick up a laxative. I had convinced myself it was just constipation and had even assigned the blame to the shrimp dinner I’d had the night before. “Fresh Shrimp” in February…in Erie?! What did I expect to happen?

I took the laxative. And I waited. And tried. And waited some more. And then the pain got bad. Real bad. I could barely walk and couldn’t move without intense pain shooting out from my left side. Now I had a new theory. Burst appendix. This was before the days of Web MD, and I was limited to only what my imagination could conjure to freak myself out. So, not wanting to die a ridiculous death in the Erie Hilton, I called a taxi and headed to the hospital.

They got me into an exam room in short order. The doctor examined me and, taking advantage of his fancy medical degree, immediately eliminated appendicitis. So much for that. He then told me he had an idea what it was but wanted an MRI to confirm the results. A quick trip through the “donut of doom” confirmed his initial diagnosis. It was something called diverticulitis. He explained how we all have small abscesses in the colon and how they usually don’t cause any problems. Sometimes, however, those abscesses become infected. It causes horrible pain and constipation, and once it gets this bad, it has to be treated with antibiotics and mass quantities of fluids. I spent a painful week in the hospital and was discharged with very specific instructions on how to adjust my diet and lifestyle to prevent a recurrence. I thanked all the staff for the great job they did, signed some papers, checked out…and promptly ignored his instructions for the next 20 years.

Christmas Eve, 2012. My wife has had enough. The final straw came when I was unable to make it upstairs for the family gift exchange. As soon as it was over, she came down and told me we were going to head to the emergency room. I didn’t have the energy to argue. Plus, I knew she was right. I’d been feeling terrible for almost three years. Something was definitely not right. It seemed like it emanated from the “diverticulitis spot” that I had become intimately familiar with due to the flare-ups I suffered through two or three times a year. The only confusing part was I had undergone a colonoscopy six months prior and had received a clean bill of health. Only much later did I learn that I had received a negligent result. My doctors all agreed- there was no way my problem could have been missed.

I should have known I was in trouble when, after the emergency room doc saw me initially, he asked me if I’d like anything for pain. I jokingly said, “Sure, how about some morphine?” He immediately replied, “Okay, we’ll get that going for you.” Uh oh. A little later he told me I had a blockage that had been caused by a buildup of scar tissue from the repeated flare-ups of diverticulitis. They needed to get rid of the infection and then remove the two damaged sections of bowel. Surgery was scheduled for New Year’s Eve. Merry Christmas and Happy freaking New Year!

I spent the next week in a morphine haze. I met my surgeon, a brilliant young lady who looked impossibly young for someone with that much schooling. She explained that they were hoping to remove the damaged sections laparoscopically. It was a relatively simple procedure that would require a couple of days of recovery in the hospital, a week or two at home, and then back to my normal life. The alternative would be invasive surgery, much longer recovery time, and, while the healing took place, I would need to have a colostomy. Due in part to my opiate fog and also due to my refusal to accept reality, I was 100% convinced everything would be done laparoscopically. No worries.

The first thing I noticed when I came to was something in my throat. Something huge and foreign. As my world blinked into focus, the nurse was there to explain to me that the damage was much worse than they had anticipated. Full surgery had been performed and I was going to be in the hospital for a while. The drugs were very helpful in allowing me to deny exactly what exactly that meant. I was much more concerned with getting the tube out of my throat and the catheter out of the other end. That cavalier attitude about my situation would soon change.

The nurses and staff were great. They changed my colostomy bag for me and allowed me to STILL not grasp my situation. That all changed when I met the ostomy nurse. She was tasked with teaching me the intricacies of daily life with a colostomy. Reality came crashing through the door when I spent 30 minutes hiding in the restroom in tears unable to change my bag. I can’t do this! This isn’t fair! (Conveniently forgetting the 20 years I had spent ignoring my doctor’s orders) Gathering myself, I sucked it up, and FINALLY was able to do it on my own. I was discharged and sent home to recuperate and heal for 30 days before heading back to the hospital for takedown surgery.

I’d like to tell you a story about how well I adjusted. About how I was brave. About how I was thankful to be alive. About how I now appreciated my friends and family even more. About how I would now refused to take all the beauty of life for granted. That’s the story I’d like to tell. But I can’t. It would be a lie. Even though none of you know me, I promised myself I would be 100% honest about my journey. Warts and all. So here goes.

It was awful. I hated every minute of it. I thought having a colostomy was gross. And hard. Life wasn’t fair. NOTHING was fair. I can’t do this. There were the usual indignities. Accidents. Broken seals. Excess gas. I was in hell. Never for one moment did I think how my situation affected those around me. How my actions and attitude affected my family, and, my wife in particular, who only wanted me to get better and get back to being the man she married. As an added bonus, I was also taking 12 Oxycodone a day for pain, and, rightly suspected, now had a raging opioid addiction. My day consisted of sleeping, crying, bitching at my family, thinking about death, and dealing with my new, hated, appendage. Day after day. Rinse, lather, repeat.

Then, one day while noodling around on the internet, I found UOAA. I started reading about my condition. And I started reading other people’s stories. I found out just how many dealt with this particular challenge. I was stunned. And the more stories I read, the more my respect grew. People who had to deal with this for years. For decades. Tears streamed down my face as I read their stories. I’d love to tell you everything changed that day. How my attitude changed overnight and how I became Mr. Positivity. Alas, it wasn’t that simple.

What DID happen, is I became embarrassed about my actions. I had always prided myself on being a tough guy who dealt with problems head-on. The more I read on ostomy.org, the more I knew this was a lie.

Every day I read the stories of real heroes. Men and women who possessed the biggest superpower of all, the ability to live a normal life despite adversity that was currently bringing me to my knees. To say they inspired me, would be an understatement. Closer to the truth would be, they saved my life.

They gave me practical advice, “insider tips” on everything from bathing to sex, and something I hadn’t felt in a long time. They gave me hope. I never posted on the UOAA discussion board. Hell, I don’t think I even registered. Due to my “temporary” status, I really didn’t think anyone wanted to hear my whining. If everything went well, my life would go back to “normal,” while these people would continue to lead quietly heroic lives day after day, year after year. I didn’t feel worthy. And I still don’t.

That’s my story. Sure, there’s more, including an unsuccessful takedown, massive infection, emergency surgery, and an ileostomy for a few more months. There was a wound vac, and an in-home nurse to change my dressing daily. And, of course, after 6 ½ months of daily opioid use, I still had to deal with that King Kong-sized habit. Yet, in the end, I was okay. It probably took almost two years to feel like me again. And even that isn’t completely accurate.

I recovered, I felt better physically, but “myself” was different. I was more appreciative, more humble, and more thankful. I was well, but I’d never be the same.

So, thanks for reading. Thanks to Ed Pfueller for giving me an opportunity to share my story. Thanks to the whole team at UOAA and, for that matter, all of the sites designed to educate, inform, and help everyone on this particular journey. Lastly, more thanks than I could ever express to all the men and women who bravely shared their stories through blogs and forums. Thanks for your bravery. Thanks for your humor. And thanks for giving me the courage to understand and accept my condition with, what I hope, was grace and determination that would make you all proud. God bless each and every one of you and may your lives be full of the joy and love that you so richly deserve. I am forever in your debt.

 

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LeeAnne Hayden’s Story

It’s Ivan’s 4th Birthday!
Four years ago today my amazing doctors, Dr. Leslie Demars and Dr. Joga Ivatury removed a huge tumor out of my pelvis and I woke up ALIVE and in a colostomy which I named (Ivan) after Dr. Ivatury, for life.
The first thing I asked Dr. Ivatury when I woke up was “did we get the f#@%r?” He smiled and smiled and said yes.

The next thing I asked was “am I in a bag?” He reluctantly said “yes.” My reaction? “Ok now let’s get me out of here so we can go to California.” I was working on a Tyra Banks product line at the time and did not want to miss the opportunity.

I was not always so positive. When I found out I had cancer in 2015 and would possibly be in a colostomy bag for life, I was devastated, to the point where I told my doctor “do NOT put me in a bag” so many times that he had to yell at me and say I have been up nights thinking about your surgery, I have no intention of putting you in a bag HOWEVER my job is to SAVE YOUR LIFE. So well, he was right.

I had such a different view on life when I woke up. God left me here to do some work and I was not going to let HIM down by playing small. I was going to live my life HUGE and give back to this world as much as I can.

I did allow myself to have strong feelings and concerns. “What if it smells, or makes noises or someone bumps it?” I would cry after cancer, but life was not over yet. What am I supposed to learn from this lesson and from what I am going through? It took me a lot of work to get to be okay. We got this one life.

I got up and forced myself to get out anyway. It helped so much that my kids, parents, and sister along with my husband and friends were supportive of me along the way.

I wanted to get back to doing the things I had enjoyed before cancer. One love was competing in Fitness America and WBFF shows in 2010 and 2011, where I placed in the top five in one of the shows I did. I knew I needed to love my body again and decided to tell the world in a live video to let people know to love the body you were given.

LeeAnne Hayden competes with her colostomy pouch and all at the 2017 America Fitness weekend in Las Vegas.

I was talking with my husband and friends and said I think I want to compete with “Ivan.” The second it came out of my mouth everyone was so supportive. I was sponsored for my training, plane, suit, costume, all of it. When I got there after months of training I almost didn’t want to do it. However, I knew I couldn’t let my fear stop me, I had to show everyone what I preached. The costume was great. It was a pair of wings that I could open and expand. I was shaking when I took my first steps out on that stage, I took a deep breath and opened the wings, hit my pose and completely teared up when everyone in the audience stood up clapping, screaming and some of them were crying. (Gosh I am starting to cry writing this) It was the most surreal moment ever. I felt amazing and supported and forgot I even had Ivan while I hit all my posing and walked off the stage to my friends in the back screaming and hugging me. It is a moment I will never forget.

There is such a stigma to ostomies, I have heard stories of how people have given up their lives because they didn’t want to be in one. I think we all need to be more vocal about it. So many more people could be saved. Thank you to UOAA for what you do with ostomy awareness!

That’s the way I’ve spent these last four years and I can’t wait to see where my life goes from here! I want to bring everything I have personally been through to all of you so that you may grow and live the life you want and deserve! Huge thank you to my wonderful doctors, my amazing family, my friends, all of you, and especially to GOD for allowing me to remain.

Whatever you want to do in life hope you run for it.

 

LeeAnne Hayden blogs about her life here and produces the LeeAnne in the City Podcast.

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Ostomy Self-Care and Wellness Tips for 2020

By Elaine O’Rourke

During the winter of 2005, I went from being an active, strong, 35-year-old yoga teacher to being completely debilitated, feeling like I was 100 years old and barely able to move or walk.

An extreme flare-up of Crohn’s disease resulted in a temporary ileostomy which was then made permanent after a year. I was down to skin and bones and had lost most of my muscle mass. My hips and whole body hurt when I slept as I was so skinny. There was very little that I could do. My body just needed to rest as it took too much energy for anything else.

When I began to regain my strength after my temporary ileostomy, I had a renewed appreciation for walking and what a good simple exercise it is. Just getting out for fresh air, step by step, seeing people and walking the beach. I had missed simply going to shops. Ahhh, to be able to move again, what a gift.

I had never considered going for my daily walk as a “gift” until I couldn’t do it. For many people, including myself, it’s not until things start going wrong that you realize how much you take your health for granted.

As I recovered I was able to slowly get back into my yoga practice and doing everything that I wanted to do. In fact, last year I started surfing which is now my greatest passion. It was previously the one thing I thought I could never do with an ostomy.

My point being, having an ostomy does not mean you can’t exercise or do sports. Just do them mindfully and within your limits. Taking good care of yourself is now of utmost importance. Real self-care not only addresses how we take care of our physical bodies but also how we deal with our emotions and how we think. After all, everything is connected.

Life with an ostomy has a lot of pent-up emotions, thoughts, and challenges. The physical body also holds on to memories and traumas within its cells. This is why you may experience or even hear of people who recall things when getting a massage, or you might start crying when you get bodywork done or when you are moving mindfully in a yoga class. The “feeling experience” is providing a release for these memories.

In my program “Surviving to Thriving: Overcoming Ostomy Challenges so you can Live a FulFilling Life” I focus a lot on the mental and emotional issues that occur but also on the importance of keeping active and making healthy lifestyle choices. As you journey into the New Year and decade what are the more tangible things you can do for your physical well-being? We all know that New Year’s resolutions go out the window by the second week in January, or that they never happen at all.

Instead, consider doing things that will contribute to your health and happiness and set a plan in place. If you find it hard to keep yourself motivated or don’t know where to start then reach out and contact me.

Strategy tips for self-care

1) Move your body
Buying a gym membership is useless– unless you use it! Our ancestors did not live sedentary lives, yet, these days in general, we are very attached to sitting around. Many people work at desks, sit in cars commuting and then sit on the couch to chill out! But our bodies are designed to MOVE.

Tip: Get up and walk around more, even set a chime to go off on your phone to remind yourself. As mentioned, walking is a great way to keep things moving and it’s free. Even a quick five-minute walk is beneficial. Meet a friend for a walk instead of coffee, or both! Move your arms over your head more. Add in some simple stretches. Basically, MOVE as much as you can as that is what our bodies are designed to do.

2) Food choice
If we think we are going to be “depriving” ourselves of something, then we will do anything we can to sabotage our best intentions. For example, If we say we are “giving up chocolate” then chances are we become obsessed with thinking about chocolate and our resolution only lasts a day! Your body is like a temple and keeping it healthy requires the right choices. This will affect your ostomy output, energy levels, muscles, organs, bones and joints.

Tip: Focus on adding in certain foods that you know will be healthier for you. Hint – these foods are mostly in the fresh produce sections of the supermarket. Before you eat and drink ask or even visualize how your body will respond, how your organs will feel, how well your GI tract will digest. Eat slowly, chew and enjoy your food. Notice how it affects your system, energy levels, and your ostomy output.

3) Make it fun
If you dread doing something, then it won’t get done. So find something that is enjoyable. Not everyone likes exercise or sports but there are many different ways that you can treat your body with more kindness.

Tip: Dancing is a great way to move. Maybe go out to hear live music where you can move on a dance floor, or take a dance class. Put music on at home that energizes you. Walk up and down the stairs a few more times. Use a fitbit watch as a way to incentivize yourself.

4) Schedule time for yourself
There are a lot of distractions that pop up during the day and before you know it, you haven’t done anything you intended to do and the checklist is still staring at you.

Tip: Schedule in your planner when you are going to do your (walk, fun movement, cardio class, yoga, meditation, etc.) Be consistent and try and have it at the same time and on the same days each week.

5) Know that you deserve it
There is nothing like a promise of a “treat” or “something special” or to plan out “bribery” if you do something! Self-discipline comes more naturally to some but it takes practice.

Tip: As you decide the new ways you are going to do things in 2020, also give yourself a promise of a self-care present when you complete your goals. As you try more nutritious food, exercising, moving your body (because that is what it is supposed to do) then treat yourself to a massage, tickets to a show, a work-out outfit (that you now must have because you actually enjoy exercise) a good book, and so on!

 

Elaine O’Rourke is the creator of the online holistic program “Surviving To Thriving: Overcoming Ostomy Challenges So You Can Live a FulFilling Life”. She is a certified Yoga Therapist & Teacher since 2003, Sound Healer, EFT & Reiki Practitioner, Recording Artist and International Retreat Leader. Her lighthearted and fun personality shines through her teachings/programs as she loves to inspire others. She is a contributing writer to the national Phoenix Magazine, presenter at the UOAA National Conference and speaker at Girls with Guts retreat.
A free guide is available: ‘3 simple ways to eliminate fears about your ostomy” by visiting Elaine’s website
www.ElaineOrourke.com
Elaine@ElaineOrourke.com

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10 Advocacy Happenings Await You at UOAA’s National Conference

Summer is quickly approaching and before you know it we will be in Philadelphia at UOAA’s 7th National Conference. With so many new and exciting things planned it is sure to be the best ever! I know whenever I attend a conference I plan well in advance and create my own personal schedule to ensure I do and see all that is of particular interest to me.  This includes conference sessions, social activities and taking some time for local sightseeing in a place I may never have been before. I also always go out of my way to try a new food or beverage native to a particular city or state and in this case it will be an iconic “Philly cheesesteak”.   

As UOAA’s Advocacy Manager I’m very excited that this conference is being held in Philadelphia, a city so very rich in history and quite frankly home to our country’s first advocates.  Here is my twist on ways you can take advantage of this city and our conference, if you have a soft spot for things “advocacy”-related:

  1. Be sure to sign UOAA’s Ostomy and Continent Diversion Patient Bill of Rights during Exhibit Hall hours at the UOAA booth. These signatures will be collected for potential use in advocacy efforts to improve quality in ostomy health care. You also can see one of the 12 surviving original copies of the US Bill of Rights at the National Constitution Center while in Philadelphia.
  2. Pay tribute to our country’s first advocates and visit the Independence National Historic Park to walk in Independence Hall where our founding fathers signed the Declaration of Independence on July 4, 1776.
  3. Celebrate your independence and and see the most famous cracked bell in American history – the Liberty Bell.  You can see it for free at the landmark Liberty Bell Center.
  4. Calling all superheroes!  On Wednesday, August 7th at 2:45 pm attend the UOAA Advocacy Session “United Ostomy Advocates to the Rescue”! Come hear first-hand from some of UOAA’s advocates on how they use their “superpowers”, and also learn more about current advocacy efforts underway at UOAA. Leave our national conference empowered to make a positive difference!
  5. Many times in advocacy we face an uphill battle and feel like an underdog. For decades now Philly has been known for the ultimate underdog tale in the Rocky movie series. Show your resilience and run/climb the infamous Rocky stairs at the Philadelphia Museum of Art.  There are 72 stone steps and at the top you can chant “Yo, Philadelphia! I did it!”. Or you can take a picture at the statue of this legendary “Italian Stallion” located near the bottom of the steps.
  6. Philadelphia is known as the “City of Brotherly Love”.  Show your love for the ostomy community and go to Love Park to get a picture at the “LOVE” statue designed by Robert Indiana.

    Love park

  7. Be sure to stop by UOAA’s booth in the Exhibit Hall to pick up some of our self-advocacy tools and educational resources for use when you get back home in your own advocacy efforts.
  8. When it comes to advocacy and activists I can’t think of a more wiser and inspiring person than the fascinating and influential Benjamin Franklin! Not only was he one of the founding fathers of the United States, but he was an author, politician, postmaster, printer, inventor, scientist, diplomat and statesman. Of interest to the ostomy community is that he was the inventor of the flexible urinary catheter and founded the first public hospital!  If you have time, visit the Franklin Science Museum or just drive by the Benjamin Franklin Bridge. As an advocate I am inspired by so many of his famous quotes. I often say the key to advocacy is not only raising awareness and educating others, but also patience and perseverance.  Here are a few of my favorite quotes by Ben Franklin:

“Tell me and I forget, teach me and I may remember, involve me and I learn.”

“He that can have patience can have what he will.”

“Justice will not be served until those who are unaffected are as outraged as those who are.”

“Energy and persistence conquer all things.”

    9) On Saturday, August 10th, at 2:15PM, please pop-in to contribute to UOAA’s first-ever research study by completing a short survey.  This data will help us make improvements to the underserved ostomy population. Upon doing so, you will also be entered into a drawing to win a prize!

   10) Join us during the conference Closing Ceremony at 3:30PM on Saturday, August 10th where we will be recognizing for the first-time the top advocate in the ostomy community! The Mighty Advocate Award, sponsored by UOAA, is a new biennial award intended to honor one individual for his/her significant accomplishments and contributions to support UOAA advocacy efforts and/or has brought greater ostomy awareness in the United States. Your presence will help make this a special moment in our advocacy history!

 

In conclusion, I’m excited to put a name to the face of the many advocates who have emailed me or have worked with me on advocacy efforts over the past couple of years, and meeting more of the people we strive to make an impact every day in our work at UOAA. See you in Philly!

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Singer’s Ostomy Past Leads Him to Partner with UOAA

Grammy award-winning recording artist speaks out for ostomy awareness and support

The emotions all came flowing back. While touring at a radio station earlier this year in Louisville, Kentucky recording artist Damon Little heard of the tragic suicide of a 10-year-old boy Seven Bridges. There was a part of his own story that he had just recently felt compelled to reveal for the first time ­– he too had lived with a colostomy as Seven once did.

Grammy-winning recording artist Damon Little had an ostomy as a child and is now part of an outreach effort with UOAA to promote ostomy education and awareness.

“This boy’s story was my story. The feelings of isolation and pain of endless surgeries” says Little who had an ostomy for most of his youth until a reversal at age thirteen. Though many young ostomates are now encouraged to be active his teachers and parents at the time sheltered him from sports and other children, because of his ostomy.

Earlier in the year while working on a new inspirational song “Be Alright,” he could not shake the feeling that something was missing. Still unaware about Seven’s death he was inspired to record a testimony about his past on the track. It felt like it was a natural fit for the song’s powerful message.

After learning of Seven’s death the song seemed like fate and Little also wanted to do more to help people living with an ostomy. He and his wife reached out to  United Ostomy Associations of America (UOAA) to see what could be done to help the next person in need.

Ostomy Outreach

UOAA is now working with Little to spread the news of our 300 affiliated support groups, national advocacy program, and free educational resources available to all those seeking ostomy information and support. He is speaking out live on radio interviews and on stage at events around the country. His story is already touching people and compelling them to do more.

At an appearance in Elizabeth City, North Carolina a hospital caseworker asked for UOAA brochures to share with patients and a man living with an ostomy who was at the gathering bravely spoke out about his story and in support of UOAA’s mission.

Though he is best known for his Gospel music, Little has also agreed to record a non-denominational uplifting version of his song “Be Alright.” We hope this speaks to all those who may be struggling with their ostomy or other issues regardless of their background. Look for that to be released in a few weeks with a special shout-out to UOAA.

A Famous Musical Family

Little, a native of Baltimore, got started singing when he was just five-year-old with his family group consisting of his brothers and cousins. His first recording was with his uncle the legendary Clarence Fountain of The Blind Boys of Alabama. The Blind Boys of Alabama have been celebrated around the world and played for three U.S. Presidents.

In his own music career Little has spent weeks on the top 10 gospel charts and top 30 on urban AC billboard. He has traveled with numerous national and international tours performing for audiences as large as 300,000 people.

Little’s sound has been compared to the legendary Al Green and the late Philippe Wynne, the Spinners former lead singer.

Fighting Stigmas

Little has found that the volunteers of UOAA and many in the ostomy community are equally shaken by the suicide of young Seven and want to do much more to help end existing ostomy stigmas.

By joining forces with UOAA Little wants the public to know that ostomy or continent diversion surgery can occur at any age, and that often the emotional scars take the longest to heal. “Most people with an ostomy who connect to the support and education they need live full, active, and healthy lives,” says UOAA President Susan Burns, a longtime ostomate. “Many people don’t realize that with some help they can swim, play sports, work, be intimate, and fully embrace a second lease on life.”

Little is partnering with UOAA to reach out to communities everywhere, particularly underserved populations to dispel ostomy stigmas and connect people in need with support and educational resources. He’ll also serve as UOAA’s Ostomy Awareness Day Champion on October 5, 2019. Events include the Run for Resilience Ostomy 5k that will raise awareness in nine U.S. cities.

Most importantly, Damon Little wants you to know it will “Be Alright” and to embrace the life ostomy surgery has allowed you to have.

Connect with Damon Little:

Facebook @IamDamonLittle

Twitter: @IamDamonLittle

Instagram: @IamDamonLittle

Youtube: Damon Little Music

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Intestines Are Soooooo Overrated

UOAA conference speaker strategically uses humor to help ostomy patients

By Ed Pfueller, UOAA

If you’re a patient of Janice Beitz, PhD, RN, CS, CNOR, CWOCN-AP, CRNP, APNC, ANEF, FNAP, FAAN,  she will likely look you in the eye and know when to employ humor and when not to. If you’re in a rut you may get an ostomy joke to break the ice. “You think this bag is full of crap? You should see my bother in law,” she once quipped, breaking down all barriers for a man struggling to adjust whose brother-in-law seemingly fit the description.

Dr. Janice Beitz is a longtime WOC Nurse and educator who will speak on the power of humor and hope in emotional healing after ostomy surgery.

Ostomy surgery and chronic illness is not a laughing matter, but how you handle it can be a key to your success. It does not seem to be a coincidence that some of the most well-adjusted ostomates tend to have a sense of humor. Humor can change a negative mindset for you and those around you.

Dr. Beitz has over 40 years of nursing experience in acute, sub-acute and outpatient care settings. She’s explored the science behind laughter and health in academia and has seen it in patient settings. She will be a featured speaker at UOAA’s National Conference in Philadelphia this August.

Her talk is entitled, Intestines Are Soooooo Overrated: Psychosocial/Physiological Issues For Ostomates. She’ll discuss the social, psychological and physical issues of having a fecal or urinary diversion. The session will describe the findings from scholarly work on these areas of interest. Strategies for ostomates to achieve a high quality of life including therapeutic use of humor will be emphasized.

Dr. Beitz also teaches the next generation of WOC Nurses as the director of the Rutgers University Camden Wound Ostomy Continence Nursing Education Program (WOCNEP). Students she has taken to visit the jovial and globetrotting members of the Ostomy Support Group of Philadelphia have left in shock. “They turn to me and say these people have traveled more and have a better life than I do!” Dr. Beitz said.

“They are seriously funny,” Dr. Beitz says of the Philadelphia group led by Stanley Cooper that is always laughing and living life to the fullest.

“She is committed to her students. She is committed to all WOC nurses, and she is committed to all patients that need a WOC nurse to ensure they receive the best possible care,” Stanley remarked.

“Janice loves to have a good laugh and will supply a good laugh when she can. When she spoke to our group, she started off with a funny cartoon from a newspaper that she projected on a screen.” Stanley.

“One thing she said to me after her appearance was that she always wanted to enter a room after being introduced to KC and the Sunshine Band singing Get Down Tonight. That is the type of good spirited, happy, energetic person that she is” Stanley said.

Emotional health will be touched upon in many other conference sessions as well. A session geared toward young adults will address body image and self-confidence with an ostomy. Relationships and sexuality sessions will often center on emotional health as well. Overcoming physical challenges often comes quicker than lingering emotional ones.

For those who have not had a UOAA Affiliated Support Group experience, the peer support at conference can provide a sense of camaraderie that gives an enlightening experience for the many who still struggle with the day-to-day challenges of living with an ostomy. Caregivers are also not forgotten at conference with a session on how to cope with caregiver stress.

UOAA’s vision is a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically and psychologically. Connect with us locally, online or at conference and get on a positive path.

At the conference, perhaps we can arrange to turn up “Get Down Tonight” as we welcome Dr. Beitz to give us a laugh and hope about life with an ostomy.

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When to Contact Your Stoma Care Nurse

Your stoma care nurse has the specialized training to help you care for your ostomy and address any issues that arise. These professionals are also known as “WOC” (wound, ostomy, and continence) nurses. Stoma care nurses are there to help you make a smooth transition after surgery, and can give you the training you need to care for your ostomy at home. You should consider them your “go-to” resource for ostomy care education, consultation, and troubleshooting.

In honor of WOC Nurse Week, celebrated every year in mid-April, it is important to recognize the ongoing role that stoma care nurses can play in your ostomy care.

When to Contact Your Stoma Care Nurse

Not every ostomy care challenge warrants contacting your stoma care nurse, but certain issues are causes for concern and should be assessed by a trained professional. Connect with your stoma care nurse if you notice any of the following problems.

If you have a colostomy or ileostomy, call your ostomy care nurse if you notice:

  • Skin irritation
  • Recurrent leaks under your pouching system or skin barrier
  • Excessive bleeding of your stoma
  • Blood in your stool
  • A bulge in the skin around your stoma
  • Persistent diarrhea
  • Diarrhea with pain and/or vomiting
  • A stoma that appears to be getting longer

If you have a urostomy, call your ostomy care nurse if you notice:

  • Any sign of urinary tract infection
  • Skin irritation
  • Urine crystals on or around your stoma
  • Recurrent leaks under your pouching system or skin barrier
  • Warty, discolored skin around your stoma
  • Excessive bleeding of your stoma
  • Blood in your urine
  • A bulge in the skin around your stoma
  • A stoma that appears to be getting longer

Finding a Stoma Care Nurse and Showing Your Support

If you do not have a stoma care nurse, you can search to Find a Nurse using your state or zip code on the WOCN Society website. This feature is also accessible by clicking the “Resources” icon in the Peristomal Skin Assessment Guide for Consumers, a free, easy-to-use, digital tool designed to help teens and adults living with an ostomy identify common skin problems, provide next steps for care or management, and prompt when it is appropriate to seek support from a WOC nurse.

How Hollister Secure Start Services Can Help

Hollister Secure Start services offer free customized ostomy support for as long as you need it, regardless of the brand of products you use, including help using the Peristomal Skin Assessment Guide for Consumers. Call us at 1.888.808.7456.

 

Incredible WOC nurses make a daily impact in the lives of people living with an ostomy. Show your support for all they do during WOC Nurse Week (April 14-20, 2019) by sharing a story or photo on social media using the hashtag #WOClove.

 

The Peristomal Skin Assessment Guide for Consumers was funded through an educational grant from Hollister Incorporated.

The information provided herein is not medical advice and is not intended to substitute for the advice of your personal physician or other healthcare provider. This information should not be used to seek help in a medical emergency. If you experience a medical emergency, seek medical treatment in person immediately.

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

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Learning to Love Your Body – Stoma and All

Following your ostomy surgery, you will no doubt have an adjustment period of figuring out your new routines and schedule. You will be learning about your appliance, how to use it, when to change it, and how it works. Although there may be frustrating and discouraging days, as you get the hang of your body and the newness of it all, you may also find yourself fascinated with your body’s adaptability. Some of the most resilient, inventive and strong people are ostomates who are changing the way people think by helping to reduce shame around ostomies as well as creating networks and communities to encourage and support others in similar situations.

Body Love

We live in a world where we are bombarded on a daily basis by media showing us advertisements of what beauty should be. The unreachable goals are already set, and then you throw in an ostomy? How in the world are we supposed to love our bodies when we feel so different? Building confidence begins with you. It begins with self-love and embracing your uniqueness. This can take time, and giving yourself the time to heal (both literally and figuratively) and come to terms with the changes and the new daily rhythms will go a long way in boosting your confidence. The great thing about confidence is that it is contagious. Others can feel it in the way you talk, walk, and are proud about yourself and your body, and when they sense it, it transforms the way they see you. This doesn’t mean that self-love is easy and immediate, but it does mean that it is a possible and attainable goal. One of the ways to lead yourself into recovery and learning to love your body is to get active. Maybe you love to run, swim, or hike in the mountains, or you’ve always wanted to join a gym but your disease was holding you back from the commitment of it. Have you always wanted to learn an instrument, or join a band? There are amazing people out there with stories of how they overcame their fears, and also how they discovered the right product for their unique lifestyle and activity.

Every body is different and being patient with yourself and your healing process is vital, especially within the first few months. While inspirational stories about others can help to normalize your situation, it is also completely normal to feel discouraged and down at times. If you are feeling extreme discouragement or hopelessness, don’t hesitate to reach out to a licensed therapist or a healthcare professional. It is important to be able to share as honestly as possible about your situation so that you can begin to move forward.

Inspirational Ostomates

If you are looking for some inspiration from fellow ostomates, there are many platforms out there with information to connect you with people and resources. Feeling like you need some encouragement in embracing your body and its changes? This video is full of helpful information as well as inspiring individuals just like you. As you begin to enter the world of other ostomates and hear their stories, not only will you be able to relate with them, you will also find that they are paving the way for others to be confident in their bodies and, in many cases, thankful for their ostomy and appliance. Maybe their stories will be the push you need to reclaim your life and find that confidence that you know you have in you. Don’t just stop there, why not become one of the inspirational stories that someone else undergoing a surgery leading to an ostomy can read about? Embrace your new life and body.

For More information, visit www.coloplast.us.

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

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UOAA Advocates in Action

Ostomates Provide Insight to Lawmakers on Behalf of UOAA

By Ellyn Mantell and Michael Quear

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

UOAA Representative – Ellyn Mantell

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

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

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

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

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

 

UOAA Representative – Michael Quear

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

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

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

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

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

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

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

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

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