Daily Living with an Ostomy

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Every Individual is Unique so Don’t Put Restrictions on Yourself Based on Others

By Lisa Febre

The morning after my colectomy, the first question I had for my surgeon was “can I still do yoga?” My surgeon had a good-natured and amused response: “Please give yourself two weeks to recover from this surgery, and then you can do all the yoga you want.” He also told me that with my specific colostomy, in two weeks I could get back to my regular diet with no restrictions. (I’ve since learned those with an ileostomy have different considerations.)

Sure enough, two weeks later, once I was sufficiently recovered, I was living out his predictions. I was back on the yoga mat, twisting myself into pretzels, lifting into tricky arm balances, and standing on my head. I was outdoors hiking and running. For the first week after surgery, I was following a soft-solids diet, and by the second week I was eating whatever I wanted. By the end of the month, I was even eating Reuben sandwiches with sauerkraut!

I knew no boundaries because I had none.

It wasn’t until I joined a support group on social media that I noticed people were questioning things I was taking for granted like taking a shower, exercising, wearing pants, and eating vegetables. Are there eating restrictions for ostomates? Was it possible some people were told they could not exercise with their ostomy? The answer is …yes… ish.

Showering with an Ostomy

I was given a temporary colostomy in December 2021 when I was diagnosed with Stage-4c Colon Cancer (at the age of 47). There is no way around it: this is a big shock to the body and the mind. But the only thing I could think about was getting into the shower and washing off the five days’ worth of sweat and grime that had accumulated on my body during my hospital stay. I stripped down, my new Hollister 2-piece system hanging off of me and stepped into the shower. I didn’t think about the bag at all, I just showered like I normally did. When I was done, I dried myself and the bag off with a towel, and… that was it. I did this every single day without a second thought.

I would laugh at myself and say: it’s just poop, it’s not nuclear waste!

Weeks later, I was surprised to learn people commenting online were wrapping up their colostomy bags with layers of plastic wrap and were trying desperately to keep their abdomens out of the water. Wait… are we not supposed to get the bags wet? That didn’t sound right to me. The barrier has to be taken off with adhesive removal wipes or sprays, and even then, it can be difficult to separate it from your skin. The durable plastic receptacle bag is meant to hold all kinds of bodily fluids, it seems obvious that it should be able to handle a little soap and water. The customer service reps at both Hollister and Coloplast concurred: they specifically told me that their products are meant to be used while showering, bathing, and even swimming, with no extra accessories. Again, because no one told me I couldn’t, I was already doing these things. It was heartbreaking to see so many of my fellow ostomates avoiding basic hygiene for fear of doing it with the bag on.

It seems like the solution might be to shower without the appliance. There tends to be even more fear surrounding this practice of naked showers. Again, this was something that I had already done without asking for permission. One day I was changing my appliance, decided it would be a great time to shower, and just jumped in. The soap on my newly exposed skin felt fantastic, my stoma looked to be enjoying the water running down my belly. Naked showers were soothing and necessary for my peace of mind. I always felt the cleanest when I showered without my appliance. The skin under the barrier stayed healthy and the adhesives worked much better. Always close at hand was a disposable plastic cup filled 1/4 up with water which I used to catch any “visitors” that might erupt from my exposed stoma during my shower. I would laugh at myself and say: it’s just poop, it’s not nuclear waste!

Exercising with an Ostomy

This is something you absolutely must talk to your doctor about. I can’t give you proper advice since everyone has a different risk value for a parastomal hernia (that’s when your intestines try to push their way through the incision around the stoma). Although 50% of people with a stoma will get a parastomal hernia, that doesn’t mean you are going to get one. Your surgeon will assess your risk. I had almost no risk of one of these hernias because I was fit and active before the surgery; there was a low likelihood that my incision site would fail while I had the stoma. I was told I could begin exercising again 2 weeks post-op. Alternately, when I had my reversal surgery 10 months later, my surgeon said there is a slightly higher risk of a hernia at the closure site and wanted me to wait 8 weeks before lifting anything over 10 pounds, and that included doing yoga.

Even within one person, my risks were different for each surgery. This is why you have to have a clear assessment from your doctor and follow their directions. Some people may still develop a hernia despite following their surgeon’s directions. It’s important to question and clarify, but ultimately listen to your doctor– and not just people online, this gives you the best chance for success.

Dressing with an Ostomy

This is a tricky one for ostomates because everyone’s stoma is in a slightly different spot. I was able to wear jeans and form-fitting clothing because the location of my stoma made that possible. Someone else may have their stoma exactly where the rigid waistband of their favorite jeans falls, which can be an issue. Your clothing isn’t necessarily going to hurt the stoma, but you do need to save room for when your stoma has output. For some, tight-fitting clothing can restrict the bag, forcing the output backward toward your skin and under the barrier.

Dressing is definitely not a one-size-fits-all situation, so unfortunately no one can really give someone else game-changing advice. Be ready to experiment, but always wear clothing that makes you feel good. It was important to me to wear jeans, so I bought new jeans with a lower waistband that fell just under my stoma. Many other women invest in maternity pants. But I never left the house feeling frumpy. My colostomy was not in charge of my fashion sense, I was!

Eating with an Ostomy

Everyone has a unique reason for having an ostomy. In my case, I had my colostomy because of cancer; I had no pre-existing intestinal issues or dietary restrictions. If you are like me and could eat whatever you wanted before, chances are high that your doctor will tell you you can go back to that way of eating after your surgery. But some people, who come to a colostomy or ileostomy through ulcerative colitis or Crohn’s disease (or other gastrointestinal disease), may already have restrictions that they still need to take into consideration. An ostomy does not always magically erase your special diet for your IBD.

The general rule is however you ate before your colostomy is how you can eat now.

It does not rule you; it is not the most important thing about you, and it does not define your life.

I am vegan and I had no trouble eating any vegetables with my colostomy. UOAA’s trusted Eating with an Ostomy Guide provides info including a standard chart of foods to avoid at first with an ileostomy or colostomy – whether that is because they create stinky output, excess gas, diarrhea, constipation, or could cause blockages. Speak with your doctor and surgeon if you are unsure how to handle building your new diet. If you’re introducing new vegetables (or any kind of food) into your post-colostomy diet, just try a little bit and see what happens! If your doctor says it’s ok, don’t be afraid to try eating the old things you love, and maybe be inspired to try some new things as well. A good practice for all is to chew thoroughly and stay hydrated.

Stay Positive with an Ostomy

Some people wonder how they can ever find something positive in something so scary as an ostomy, but it can be done. You don’t need to do it in big grand gestures or sweeping alterations in your character. Just try one little switch when the opportunity comes up. It isn’t about skipping down the street singing the praises of your ostomy, it’s about finding moments when you can see the silver lining. I thought it was sort of fun to have something so unique on my body. Very few people ever get to have this close a relationship with their intestines, so instead of feeling sorry for myself, I decided to call myself “lucky” for learning so much about how my digestive tract works.

Maybe most important of all, my ostomy led me to a UOAA support group where I met some wonderful people. I have made new friends who I would never have met without my ostomy. That is something to be very thankful for.

Spend some time every day when you force yourself to not think about your ostomy. Even if it’s just 20 seconds, it is important to learn to push this thing into the background of your life. It does not rule you; it is not the most important thing about you, and it does not define your life. Stay Positive! One day, one hour, sometimes one minute at a time, but you can do this.

Learn to Take Care of Your Ostomy

Our emotional recovery depends on regaining independence. I was only 47 when I received my ostomy. I am too young to rely on others to take care of me. I laughed when the home health aide arrived and started treating me like I was 80. I was not going to lie down and become helpless. I was going to be an active participant in my own health and recovery.

Learning how to care for yourself makes you feel like a Superhero!

If you suddenly find yourself having to depend on someone else to maintain your appliance, you will feel even more out of control and worried that something might go wrong. Believe me: something will go wrong — leaks happen to the best of us, and at the most unexpected times. If you have to wait until your nurse can come to your house, or until your partner gets home from work, you will feel more helpless with each passing day. Paranoid that something terrible will happen if you get a leak while you’re alone, you may not leave the house to run errands, you may say no to social gatherings, and you may not want to go back to work.

Learning how to care for yourself makes you feel like a Superhero! I had a cool little zipper bag that fit in my purse containing a precut barrier, 2 extra bags, 2-3 adhesive remover wipes, 2-3 skin prep wipes, a disposal bag, and a travel-size PooPourri Spray. Knowing I had all the supplies I needed to do a quick bag change in a strange bathroom gave me immense peace of mind. I could change the whole system in less than 5 minutes, all by myself!

And if you need a little smile while you fumble around with your first bag change alone, just repeat my favorite mantra out loud: I got this whole thing in the bag!

 

Lisa Febre is the author of “Round the Twist: Facing the Abdominable,” a memoir about her diagnosis and treatment of Stage-4c Colon Cancer, which hits bookshelves in September 2023. She had a descending colostomy for 10-months.

We’re here for Colorectal Cancer Survivors

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By Cheryl Ory, UOAA President

President Biden has proclaimed March 2023 National Colorectal Cancer Awareness Month. The American Cancer Society says that colorectal cancer is the third leading cause of cancer related deaths in both men and women. On another note, the death rate has been dropping for several decades. One reason is that treatments have improved. Another reason is that colorectal polyps are now being found more after screening and removed before they can turn into a cancer.

UOAA Advocate, ostomate and colorectal cancer survivor Allison Rosen speaks on the National Mall as part of the United in Blue Rally sponsored by Fight Colorectal Cancer. Video: United in Blue Rally on the Mall (1)

In 2008 I was diagnosed with Stage 3b colorectal cancer. I was told the cancer had been developing for at least 10 years or more, most likely when I was in my early 30’s. There was a polyp, if it had been removed at an earlier date the cancer would not have developed. After radiation, chemo, surgery, and more chemo I am now a colorectal cancer survivor with a permanent colostomy, an ostomy that has saved mine and others lives from not only cancer, but other debilitating diseases.

I’m happy that UOAA is standing alongside partner organizations like Fight Colorectal Cancer to push lawmakers into giving attention to the alarming rise in young people with colorectal cancer.

With younger people being as risk and diagnosed , The U.S Preventative Services Task Force lowered the recommended screening age to 45 in 2021.  One in five colorectal cancer patients is between the ages of 20-54. Talk to your doctor about options for colorectal cancer screening. As the Colon Cancer Coalition states with earlier screening and detection, “Colorectal Cancer can be  Preventable, Treatable, Beatable.”

If you are a person still at risk, like those with IBD, let me urge you to get screened. Screening can result in any colorectal cancers being found earlier when they are easier to treat.

Here at United Ostomy Associations of America (UOAA) we have a long legacy of supporting the survivors of cancer and many other conditions so that they can have best quality of life possible. If your cancer requires a life-saving ostomy surgery remember-you are not alone. 725,000- 1 million people in the U.S. of all ages and backgrounds live with an ostomy.

Every individual person’s disease treatment is unique but ostomy surgery for colorectal cancer may mean a temporary ileostomy (from the small intestine) or colostomy (large intestine). This may be required to give a portion of the bowel a chance to rest and heal. When healing has occurred, the colostomy can often be reversed and normal bowel function restored.  It’s important to know that not everyone with an ostomy will be a candidate for a reversal operation. A permanent colostomy may be required when a disease affects the end part of the colon or rectum.

We have new Living with a Colostomy guide and ileostomy guide to help you learn as much as possible before or after you have this life changing surgery.

It’s especially important to connect with one of hundreds of  UOAA Affiliated Ostomy Support Groups in the U.S. before, or shortly after, your surgery. Peer support and preparation can put you on the path to success in what may be a challenging time both emotionally and physically.  Ask if the hospital has a certified ostomy nurse and insist on having your stoma placement marked before surgery. These and other self-advocacy tools are paramount and outlined in our Ostomy Patient Bill of Rights.

You may feel too overwhelmed as you are discharged at the hospital to fully understand ostomy pouching systems and accessories and lifestyle considerations. If you have a  medical question contact your doctor or nurse, but if you have a quality of life question-UOAA resources here at ostomy.org and peers at UOAA Affiliated Support Groups likely have the answers.

It’s important to learn the facts about living with an ostomy. After the healing period outlined by your surgeon you can swim, bathe, be intimate, travel, and embrace a new normal life. After some trial and error, you may also eat most of the foods you have been able to eat in the past. Education is key to battling misinformation.

Unfortunately misinformation and stigmas surrounding both ostomy surgery and colorectal cancer affect the number of people getting screened or getting the medical treatment they need.  Let’s work together to educate, advocate and support survivors.

 

Cheryl Ory is a colorectal cancer survivor who received a permanent colostomy in 2008. Cheryl is a Registered Nurse who has had a passion for volunteering with the ostomy community ever since and first joined UOAA’s Board of Directors in 2015. She now holds the position of President.

 

 

 

Life as a Double Ostomate

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For people who have recently come to accept or are still struggling to manage one ostomy the news that they may need to have a second stoma and pouching system could be overwhelming. Please know you are not alone. Many people are able to thrive in life with two ostomies, or multiple diversions.

When UOAA hears from those with questions for a double ostomate we often refer them to ostomy community friend Jearlean Taylor.  Jearlean wanted to share some advice and invite all double ostomates to her talk and open discussion entitled “Life as a Double Ostomate” on August 12, 2023 as part of UOAA’s National Conference in Houston, Texas.

Sharing with the community of double ostomates is so refreshing and exciting. It is true “we are not alone”. We can live our life as a double ostomate with joy.

I am Jearlean from Baltimore, Maryland. I am a double ostomate, fashion model, author, motivational speaker, entrepreneur, and ostomy advocate.

My life has had some unexpected outcomes. I guess you can say “life” happened. At the tender age of 3 years old I developed a rare form of cancer (Rhabdomyosarcoma). Because of the tumors I had to undergo ostomy surgery, which left me with two permanent ostomies (colostomy & urostomy).

If you or a child come to find you need a second ostomy my advice is to ADAPT. I had to learn to adapt. As I got older it was two major things for me to adapt; body and mind. When we hear two ostomies we get scared, but when we accept what we can’t change it says we are survivors. I adapted to new ways of taking care of my body (ostomies) and keeping my mind positive. Those still adapting to having two ostomies reflect how far you have come and where you are now. Celebrate each moment.

A Common question or statement I get is “you had your ostomies that long. How did you adapt?” The moment I learned to deal with my medical circumstance when my mom explained that I was not different from anyone else. I am beautiful with my bags. I can be, do, and follow my passions and dreams. I can live a full and vibrant life. It happened just as she said. Because of what she instilled in me, I BELIEVED IT.

When we hear two ostomies we get scared, but when we accept what we can’t change it says we are survivors.

Sharing with the community of double ostomates is so refreshing and exciting. It is true “we are not alone”. We can live our life as a double ostomate with joy. We are more than our ostomies.

I also try to give encouraging tips for dressing with an ostomy for comfort and peace of mind. Remember.

  • We are beautiful from the inside out
  • Work with your body type and comfort
  • Look for clothing that YOU like ,and what is comfortable for your ostomies
  • Shopping for clothing; take a family or friend along for support
  • Try on multiple items of clothing, even the clothing in your closet
  • Consider ostomy accessories (ostomy wraps, stealth belt, hernia belt, fitted tops, high waist undergarments, etc..)

We have the ability to make a difference and change lives even through our struggles. You may have an ostomy, dealing with chronic illness, feeling down and inadequate at times, but remember you are more than you have become.  Our situations, challenges, and unforeseen circumstances does not have to dictate who we are or who we can become. My purpose is to inform everyone that “life” happens to us all; good, bad, and indifferent. I want to show people even through our struggles, pain, disease, and even having ostomy we have a purpose in life.

“DIFFERENT TO MAKE A DIFFERENCE“

 

You can find Jearlean online at jearleantaylor.com and across social media. Meet her and a whole community of double ostomates at UOAA’s 8th National Conference August 10-12, 2023, In Houston Texas. 

Calling all Ostomates, You’re Invited to H-Town

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By Robin Glover

Come one, come all to Houston, TX, for the 8th United Ostomy Associations of America (UOAA) National Conference!

From August 10-12, 2023, UOAA and the fourth largest city in the United States is opening its arms to welcome ostomates from all over the country for three full days of fun, learning, advocacy, and unity.

Houston is known as the Space City for its NASA connection but also more recently just H-Town for its culture and the “Big Heart” for its welcoming spirit of those affected by Hurricane Katrina.

Houston is an ultra-diverse city with something to offer everyone, from world-class dining to high-end shopping to down-to-earth BBQ joints, and believe it or not, ice skating!

The best part? You can find all of that within a very short distance from The Royal Sonesta Galleria Hotel where the conference is being held.

Leave your worries behind and imagine a learning vacation where you can be surrounded by new ostomy friends who have been in your shoes. The only thing you’ll need to do is have an open mind and have some fun.

The Luxurious Royal Sonesta Hotel

There are lots of places to go in the Uptown area but The Royal Sonesta Galleria itself offers enough that you never even need to leave its luxurious ambiance. It has four restaurants, a coffee shop, a fitness center, an accessible swimming pool, a hot tub, and, if you do want to head somewhere, a free shuttle service to points of interest within 3 miles (ADA transportation available upon request.) You can bring your pet too!

 

Royal Sonesta Houston Galleria
2222 West Loop South
Houston, TX 77027
Hotel Reservations: https://book.passkey.com/event/50354976/owner/5142/home
Room Block 2023 UOAA National Conference
Special UOAA Rate $143 plus taxes

What could be better than finishing a fun-filled day at the conference by hanging out with new friends and old acquaintances without having to go anywhere? Just gather around in the lobby area, sit together at a restaurant (enjoying a meal, a special drink, or just a glass of water), or hang out at the pool and talk the night away sharing stories and experiences with ostomates from all over the country.

You’ll want to stay through Saturday night and get some dancing boots to wrap up the event with music, desserts, and country line dancing lessons.

Click Here to get the UOAA Room Block Rate. As conference guests staying at the hotel, we’ll be the VIPs.

Explore Houston’s Famous Galleria Mall

A half-mile away, the 400-store Houston Galleria welcomes 30 million visitors a year and is home to Chanel, Dolce & Gabbana, Louboutin, and Tom Ford (and basically every other designer) boutiques, as well as an Apple Store, LEGO Store, Tesla showroom, a 2,000 square ft. children’s play area, and the TFTI | Interactive Selfie Museum (they charge admission).

There’s also an escape room, an awesome candy shop, jewelry stores, shoe stores, and a lot more. Plus, incredible local dining options from sushi, Indian food, French food, and steak to national favorites like Shake Shack and The Cheesecake Factory, along with tea shops, frozen yogurt, coffee shops, and juice shops.

Oh yeah, ice skating! The Galleria offers year-round, indoor ice skating (fee) for all ages and levels.

You could easily spend a couple of evenings after the conference sipping on some coffee, tea, juice, or your favorite hydration drink while roaming around The Galleria taking in the scenery, doing an escape room, gawking at the price of a designer belt, or possibly even some shopping.

Houston water wall and park near the Galleria Mall.

The Beautiful Gerald D. Hines Waterwall

If you’re not in the mood for the mall (or already went), you can take a quick evening stroll to Gerald D. Hines Waterwall Park. This iconic Houston architectural landmark is beautifully lit at night and provides peace and serenity in the form of a 50-foot-tall sheet of cascading water. It’s really quite mesmerizing and is surrounded by a 3-acre park featuring green space and nearly 200 live oak trees.

Other Things to Do During the Weekend

Experience Global Cuisine
Houston is one of the nation’s most diverse cities and offers an authentic cultural experience from places all over the world and fusions like Viet-Cajun. Depending on your dietary restrictions, you can try traditional food and drinks (including non-alcoholic) from Ethiopia, India, Sri Lanka, Nigeria, West Africa, Vietnam, China, Japan, Afghanistan, Portugal, Nepal, Brazil, Central America, and, of course Texas all within 5 miles of the hotel.

See the World Series Champions
The Houston Astros will be playing the Los Angeles Angels at Minute Maid Park on August 10, 11, 12 and 13. The stadium is 15 minutes from The Royal Sonesta Hotel. Even if you’re not an Astros fan, it’s still a great ballpark and a great experience.

Watch a Tony-Award Winning Musical
The Motown-inspired Ain’t Too Proud: The Life and Times of the Temptations will be making a stop on its off-Broadway tour in Houston during the weekend of the conference. There will be nightly shows at the Hobby Center for the Performing Arts. Ain’t Too Proud won a 2019 Tony Award for Best Choreography. The theater is also 15 minutes from the hotel. (Uber is your friend.)

Be at the Center of It All at The Royal Sonesta Hotel

Houston is a wonderful and welcoming city with so much to offer. The list of things to do could go on forever. Consider bringing the entire family and add some extra days to your hotel stay to truly experience it. FYI, for those flying in the hotel is about an equal distance from either of Houston’s major airports.

Stay Saturday night for the Texas Theme night at the hotel complete with County Line Dancing lessons and more.

But, since the 2023 UOAA National Conference is going to include incredible speakers, Q&A’s, meet and greets, social gatherings, the chance to explore all the latest ostomy products, and the opportunity to connect with more fellow ostomates, j-pouchers, and people with all types of continent diversions than you’ve probably even seen in one place, these are just a few ideas very close to The Royal Sonesta Galleria Hotel.

Because, chances are, you’ll probably end up spending almost all of your time there enjoying a huge gathering of people who have been through the same experiences you have and understand like nobody else can.

The 8th UOAA National Conference in Houston is a life-changing opportunity to make lifelong friends and you won’t want to miss a second of it.

 

Robin Glover is a writer based in the Houston area. He has a permanent ostomy after being diagnosed with Crohn’s Disease in 2017.

TRAVELING WITH AN OSTOMY

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Since extra security precautions are still being taken at airports and other transit hubs worldwide, a little pre-planning and understanding of both security rules and your right to privacy can help you avoid problems in transit and enjoy your travels.

• TSA officers should NOT ask you to show your pouch—you may be asked to rub over your pouch outside your clothing so they can test your hand to rule out explosive residue.

• In particular, remember that all airport screenings must be conducted with courtesy, dignity and respect. You may request screening in a private area at all U.S. airports and most international destinations. If you encountered treatment outside of TSA protocol you can file a complaint, (please copy UOAA’s volunteer TSA Liaison gfsalamy@comcast.net)

A few additional tips to keep you on the go:

Carry a statement from your healthcare professional stating your need for ostomy supplies AS WELL AS a Travel Communications Card (which can be found here.)

UOAA's TSA Notification Card

TSA rules state that you can be screened without having to empty or expose your ostomy; however, you may need to conduct a self pat-down of the ostomy as a test.

NOTE: You may always have a travel companion with you during a private screening.

If you are traveling to a foreign country, bring this information written in the appropriate language. Google Translate may be helpful with translations. If you find you need additional supplies while traveling, a local pharmacy is a great starting point. The local pharmacist should be able to provide you with the necessary supplies and/or refer you to a local clinic/hospital for support.

Pre-cut all cut-to-fit barriers at home. Although current United States Transportation Safety Administration (TSA) rules allow curved point scissors with blades less than 4″ in length in your carry-on luggage, keeping your ostomy scissors in your checked luggage may avoid delay and extra screening

Consider purchasing travel insurance that guarantees getting you to a hospital, if necessary.

When it comes to supplies, OVERPACK! Better safe than sorry. Pack at least three days’ worth of ostomy supplies in your carry-on luggage, just in case your checked luggage is misplaced or there are delays and/or non-availability at your destination.

Drink, drink, drink. Nothing slows down a vacation more than dehydration.

If traveling by car, take advantage of rest areas. Stop and empty your pouch regularly; you never know how far it will be until the next one!

Pack ostomy-friendly snacks.

Keep a set of clean clothes handy whether in your carry-on luggage or in the trunk of your car.

Carry a few plastic bags and wet wipes for quick clean-up.

The idea of taking long trips with an ostomy can seem daunting. But with a little extra preparation, you can enjoy the trip of a lifetime.

 

Editor’s note: This blog is from one of our digital sponsors, Convatec. 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.

5 Reasons It’s Awesome to Have an Ostomy During the Holidays

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By Robin Glover

The holiday season is here! Yay! It’s a wonderful time to build lasting memories and celebrate shared traditions. The holidays always bring people together.

But is that always a good thing? In spirit, yes. But in practice…maybe not. There are crowds at the mall, long lines at the store, endless Amazon deliveries, presents to wrap, meals and small talk to make, and on top of it all, they want us to look nice and show up to parties, too.

All this bringing people together can be a bit much.

But what if you could find peace and serenity almost anytime you want? What if you could enjoy a few moments of quiet solitude among the festive chaos?

Well, if you’re lucky enough to have a colostomy or ileostomy, you have that power. And it’s just one of the ways having an ostomy during the holidays is pretty awesome.

  1. Instant Peace and Serenity

So Uncle Bob had a little bit too much eggnog. And now he’s passed out on the couch ripping off farts that would put a skunk to shame. Nobody wants to be near him.

But deep down, everyone’s a little jealous. He’s over there in his own little cloud getting some much-needed peace and quiet.

The problem is that Uncle Bob can’t control when he lets out a little gas. But, we ostomates with an ileostomy or colostomy can! We can have our own little cloud of solitude at the ready for when we need a little time alone.

Simply “burp” your pouch and suddenly the room empties and you’re surrounded by nothing but instant peace and serenity. Ahh…the joys of being an ostomate.

  1. Get in the Holiday Spirit

Those beige pouches can be a little drab. But there’s nothing a little holiday decorating can’t fix. No matter your type of ostomy or what holidays you celebrate, a few battery-powered lights and some glittery garland can turn you into a walking celebration of the medical miracle you are. Of course, premade holiday-themed pouch covers such as those pictured from C&S Pouch Covers, or several Etsy shops, could do the trick as well.

C&S Pouch Covers Gingerbread Holiday pouch cover

People will be totally jealous. They’ll wish they had an ostomy pouch to decorate. But they’ll just have to stick to ugly sweaters they got off Amazon like everyone else…boring.

  1. Last-Minute Stockings

Oh no! The dog ate Bailey’s stocking! Where are you going to put those awesome stocking stuffers you got them? You search around the house and can’t find a sock or a bag worth using.

You hear a commotion. Are the kids up already? You gotta hurry. Then, you remember that order of ostomy supplies that just came in. A pouch will be perfect! So you run to your supply stash and grab one.

Throw some candy in it, add the yo-yo and animal erasers, and you’re saved! Thank goodness for ostomies!

  1. Let It Go! Let It Go!

It’s last-minute gift buying time. You’ve been waiting in line for twenty minutes and then those dozen latkes or half-gallon of cider suddenly kick in and you need to go to the bathroom. Now, most people would either have to hold it not knowing when they’ll finally get to go, or get out of line and rush to the restroom.

But not you. Luckily, you can just go while you’re in line! Of course, this only works 50% of the time depending on whether you have a urostomy or colostomy/ileostomy. Unless you’re lucky enough to have both!

  1. Let It Signify Your Resilience

Your ostomy is a symbol of all you’ve been through and the faith, fortitude, and resilience it took to get through the toughest times.

So when you do actually get a quiet moment to reflect during the holidays, remember how far you’ve come and that you’re an inspiration to those around you.

Even if you didn’t welcome it or are having a difficult time right now, look at your ostomy as the reason you get to experience everything, good or bad, that the holiday season has to offer. Because an ostomy truly is a gift and, as an ostomate, your life is the greatest gift of all to those who love you. You are a miracle.

 

Robin Glover is a writer based in the Houston area. He has a permanent ostomy after being diagnosed with Crohn’s Disease in 2017.

 

Destined to Love, Ostomates by Chance

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By Ed Pfueller, UOAA Communications Manager

Taylor Mitchell and Michael Ross

It was raining every day, for weeks, before Taylor and Michael were set to get married. But as the recently wed couple stepped out of the church for photos, only the sun was shining, a distant mountain range framed their joy – the chilly Alaskan rain held off.

“It was an absolutely magical day,” says Taylor, the bride. “Taylor took my breath away when I saw her, she was absolutely stunning,” Michael recalls.

Even if the dark clouds had drenched their special day, it’s doubtful it would have dampened their mood. This specific couple is used to living with ostomies and chronic illness and they seem prepared to weather any storm.

Friends from the Start

Taylor and Michael first met ten years ago in a local college undergrad class. “I scanned the room, saw him, thought he was cute, and decided I wanted to sit by him and try to be friends. I didn’t know if anything would come of our friendship. We had a great connection as friends, Taylor recalls.

“She was smart, insightful, and easy on the eyes, but I would never have imagined she was interested in me beyond friendship,” Michael says.

The friendship slowly turned into dating. “We have a lot in common and also have a lot of differences. I love to plan, and she is more spontaneous. We both respect each other and can be vulnerable with each other, and the biggest thing is we trust each other,” Michael says.

Taylor says some things she loves about Michael is that he understands her and that they have a shared faith. “He always wants to help me any way he can, and he’s generous to others,” she says.

What is an Ostomy?

“While we were dating, I didn’t know Michael had an ostomy for a while and when he did tell me, I had no idea what it was,” Taylor says. “His ostomy was never an issue for me and so my experience while dating was positive! His ostomy never impacted anything in our relationship from my perspective.”

Michael has had a long ostomy journey and awareness, his mother had a urostomy. ”I had a colostomy for about two years, takedown for four, and have had a permanent ileostomy for the past fifteen years due to complications with Crohn’s disease,” he says.

“I didn’t date much before I met Taylor but had no negative experiences when I did date. Taylor was very understanding when I told her (and showed her) about my ostomy. She was very understanding and seemed eager to learn more.”

“My advice would be, if you’re a person who doesn’t have an ostomy and finds yourself dating someone with an ostomy, educate yourself and do your best to understand your partner, their limitations (if any), and then just treat them as a regular person!” Taylor says.

Taylor also advises that if you have an ostomy and find yourself with someone who doesn’t have an ostomy. “Give the partner an opportunity to accept you and make the choice for themselves on what they’re comfortable with. You’re not for everyone and that’s ok and vice versa! I think it will always be slightly nerve-wracking to have a body that isn’t “normal” by current beauty standards because of the fear of rejection and embarrassment, Taylor says. “Society tends to tell us that no one will want us if there’s something “wrong” with us. But, if you can muster the courage to put yourself out there, the outcome may be better than you ever imagined!”

I don’t think we will have any more challenges than the average couple… we just poop differently. -Michael Ross

In Sickness and in Health

Caregiving has been a consistent part of Taylor and Michael’s relationship. “When Michael had to have revision surgery, I wanted to make sure he’d have easily accessible food so he could focus on healing. I came over to his house prior to surgery and we made a few different meals to freeze. It was a great feeling for me that we got to spend time together cooking and his food would be taken care of while he recovered. He was used to taking care of himself so it meant a lot to me to do this for him.”

Meanwhile, Taylor started dealing with her own undiagnosed chronic illness. “I had to go to the Mayo Clinic while we were dating, and he took time off of work to come with me for a week. He came to all my appointments and helped me navigate all my emotions with what I was dealing with. This is the kind of thing we do for each other, we try to make the hard times easier by taking care of the small things and the big things,” she says.

Just a year and a half ago Taylor, with her health worsening Taylor had ostomy surgery as a result of chronic constipation. For better or worse they were now an ostomate couple.

A Couple of Ostomates

After her ostomy surgery, Taylor says she, “shared with him every single aspect of what I was going through. It was nice to be with someone who already knew! It felt good from my perspective to understand him better, now that we had the same appliance… I actually knew first-hand what he was dealing with.”

Michael says that one of the best parts of being with another ostomate is knowing that someone really understands what you are going through. “It’s nice to be able to compare notes on new products and understand when my partner isn’t feeling well, to have the option to share supplies, tag along to doctor’s appointments, and ask questions about care, procedures, and recovery,” he says.

In addition to a new mutual understanding of health issues, Taylor says, “We know what to do if one of us isn’t feeling well. We just understand each other on a deeper level. He accepts me as an individual and he accepts my body even as it changes with all my health challenges.”

It felt good from my perspective to understand him better, now that we had the same appliance… I actually knew first-hand what he was dealing with. -Taylor Mitchell

As for difficulties, they both dread a possible double leak at night, and can imagine the challenge of not feeling well at the same time or needing a procedure around the same time. Taylor says the most challenging part has been encouraging the other to stick to the foods that work for us, to drink water more consistently, and get our electrolytes in.” Michael concludes, “I don’t think we will have any more challenges than the average couple… we just poop differently.”

Finding Community and Support

Even with partner support, Taylor says “UOAA has been so incredibly important to me in my ostomy journey. When I first got my ostomy, I scoured the UOAA website and read every piece of information I could find which helped ease my mind and answer my questions. UOAA’s website also helped me to be able to share information about my ostomy with family and friends.”

The couple, who both work in logistics, has recently moved to Colorado but while in Alaska both say they had the good fortune of having Luella Odmark as their WOC nurse.

“Luella is an amazing individual who cares so deeply about ostomates,” Taylor says. She does a training for nurses at one of our hospitals and has invited my husband and I to speak to the class about our ostomy history, give advice on what we wish we had from nurses, doctors, and hospital staff as well as sharing some of our favorite products,” she adds.

“I enjoyed observing the transformation of two people pursuing their own interests, coming together, including getting married, now mentoring others about ostomies,” says  Odmark, a WOC Nurse and the leader of the Anchorage Ostomy Support Group. “I hope to see them continue to spread hope about living with an ostomy,” Odmark adds.

Odmark also joins the couple each Ostomy Awareness Day to walk the Run for Resilience Ostomy 5k. The experience was especially meaningful to Taylor. “The Ostomy 5k was a huge accomplishment the first time I did it because I was three months post op and it was a huge struggle for me to walk a 5k, I almost didn’t finish it and wanted to give up so many times. Taylor continues, “My second time, this year, it was still a hard thing for me to accomplish but I did so much better! I loved seeing people from all over doing their 5k however was comfortable for them. It was encouraging!”

 

UOAA has been so incredibly important to me in my ostomy journey. -Taylor Mitchell

Taylor is especially open about her ostomy journey and embraces Ostomy Awareness Day as a chance to connect with more people online and see their stories. “It’s such a nice feeling to know that I am not alone. I see people who are confident with their ostomy and I see people who are working to build their confidence,” Taylor says.

Taylor hopes to help even more people and nurses through UOAA outreach opportunities. “I love UOAA’s mission, I love the work they do, and I love all the resources that are available for FREE so financial barriers are removed for as many people as possible. Accessibility is so important! I am proud to be a supporter of UOAA.”

Michael agrees and adds, “I’m very thankful for all of the people that organize the walk, work with ostomates, and are around to help us on our ostomy journey. I’m most thankful for my wife, who I get to take this journey with every day.”

 

Ostomy Surgery Saved Matthew Perry’s Life. It’s Time to Stop the Stigmas.

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Excerpts from Matthew Perry’s new memoir show that even TV stars are vulnerable to poor ostomy care and stigmas UOAA is working to erase.

By James Murray, UOAA President

(Update: People around the world have been reacting to the sad news that Perry was found dead in his home on October 28, 2023.)

In a preview of his new memoir Friends star Matthew Perry reveals to People that in 2019 his colon burst from opioid abuse and that he spent two weeks in a coma before waking up unaware that he had emergency ostomy surgery to save his life.

He reveals that ‘It was pretty hellish having one because they break all the time’ which as President of United Ostomy Associations of America (UOAA) shows me that even a Hollywood star is susceptible to poor quality of care and the ostomy stigmas our organization is fighting to end.

I had lifesaving ostomy surgery as a result of colon cancer and I am among the 725,000 to 1 million people in the United States we estimate are living with an ostomy or continent diversion. Many of us live healthy and active lives thanks to follow-up care by certified ostomy nurses, education, emotional support, and the fact that a properly fitted ostomy pouch should not break, smell or restrict your desired lifestyle.

The book also reveals that Perry’s ostomy was temporary and that his therapist said ‘The next time you think about taking OxyContin, just think about having a colostomy bag for the rest of your life.’ Perry says this was the catalyst for wanting to break his long pattern of addiction.

While it’s wonderful that Perry has fought to end his addiction, these words sting for those of us who deal with the consequences of ostomy stigmas in our society. We wonder if Perry would have come to see the ostomy differently if given the chance to attend an ostomy support group or talk with another person living with an ostomy during his 9-month recovery. Did he receive information about organizations that support ostomy patients prior to discharge? Research shows that these and other UOAA standards of care can make all the difference in a patient’s outcome.

Despite the fact that ostomy surgery saves or improves lives, there are still people who believe that death is a better choice than having this surgical procedure. People of all ages struggle with body image issues and acceptance in life with an ostomy and perpetrating these stigmas can leave deep scars.

Perry also mentions looking at the scars from his 14 abdominal surgeries as motivation for ending a cycle of addiction. Perry and those interviewing him are rightly celebrating and supporting addiction recovery efforts. We ask that they also give a moment to help raise positive ostomy awareness, and share our resources available to all those in need.

James Murray is President of United Ostomy Associations of America Inc. (UOAA) a national 501(c)(3) nonprofit organization that promotes quality of life for people with ostomies and continent diversions through information, support, advocacy and collaboration. Educational resources, advocacy tools, support groups and more can be found at www.ostomy.org)

Donate today to help the next ostomate in need. 

Diet and Digestion with an Ostomy

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Twelve years ago, Sarah had ileostomy surgery after living for years with ulcerative colitis. Ostomy surgery has allowed Sarah to get back to eating foods she loves, and she says “it has been the best thing for me.”

Sarah now eats many of the same things she did before her ileostomy and enjoys them more than ever. Here are some tips that Sarah has learned over the years for eating, digestion and activity.

  1. Drink up. Hydration will always be an issue, so drink lots of water. I like to toss in a slice of lemon for a little extra flavor.
  2. And chew some more. If it looks the same coming out as it did going in, you need to chew those foods better.
  3. Start slow and build up. If you’re right out of surgery, you might be more sensitive to foods than you will be six months down the road. Use trial and error to see how foods work for you and be sure to track the results. If you’ve had ileostomy surgery, add high-fiber foods back into your diet gradually to make sure you can digest them well. These include raw fruits and veggies (especially with skins), nuts, seeds and popcorn.
  4. Input always makes output. With an ileostomy, your stoma is going pretty much all the time, so it’s important to track and manage your input and output. For example, if I was going on a job interview, I would not eat a big meal right before, because my stoma may create output and my pouch would fill up – and you don’t want that during an interview!
  5. Do what you love! I go on bike rides, I go boogie boarding. It may take a little time and tracking to know what works best for your body, but you can do all those things and keep your stoma safe.

Sarah, with the help of the My Ostomy Journey App, now has the ability to track everything digitally. She can also use the app to contact someone for additional support, or if she has any questions.

Sarah says, “The My Ostomy Journey app makes it easy for us to keep track of whether we’ve had enough water or what foods we eat. I wish I’d had this resource right after surgery, especially when I was first figuring out what does and doesn’t work for my body!”

 

Editor’s note: This blog is from one of our digital sponsors, Convatec. 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.

6 Ways You (Yes, You) Can Make a Difference on Ostomy Awareness Day

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By Ed Pfueller, UOAA Communications and Outreach Manager

The ostomy community is a big group with diverse medical backgrounds, ages, and attitudes about living with an ostomy. One thing almost everyone can agree on is that ostomy and continent diversion surgery saves lives. We all hope for a day when no one who has an ostomy feels alone in life. Ostomy Awareness Day is Saturday, October 1, 2022 ­and however you are most comfortable participating – you can have an impact. Your voice matters and now is the time to use it or support others who do. 

If You’re Supportive but Busy

I had very little to go on, more to learn than I realized, and felt somewhat lost and well, scared. Discovering United Ostomy Associations of America (UOAA) when searching online for ostomy organizations and associations was a relief and godsend. -Myrna Pair

A couple of clicks is all it takes to put a smile on the face of a resilient ostomate or dedicated ostomy nurse. Check out the heartwarming stories of those on the Run for Resilience fundraising pages. Many of them still need a donation. The Ostomy 5k is the biggest fundraiser of the year for the programs and services offered by UOAA, a national 501 (c)(3) nonprofit organization. We have not met the Virtual Ostomy 5k fundraising goal of $25,000. Donating to UOAA, whenever you have the means, helps to sustain our small but powerful national ostomy organization’s work to improve the quality of life for people living with an ostomy, all year long.

If You’re Active on Social Media

Great, stop scrolling and go share your #OstomiesAreLifesavers story today! Even if you have never talked about it publicly before, consider letting your social networks know the things you have been able to do and witness in life after surgery. Help dispel stigmas and fear surrounding ostomy surgery, you never know which of your connections may have an ostomy or be faced with surgery someday. Post a photo, video or story and tag or DM @UOAA and use the hashtag #OstomiesAreLifesavers and #OstomyDay2022

Another quick and easy way to share your ostomy story is to complete the This or That Ostomy Edition, tag uoaa and post it to your stories.

If You’d Rather Work Behind the Scenes

You don’t have to post ostomy bikini pics to be an effective advocate. Anyone can call or send our action alerts to their elected officials. The U.S. Congress has designated official days for mountain biking and cowboys but not for Ostomy Awareness. This is because of a lack of congressional co-sponsors. Congressman Donald Payne (NJ) is introducing a Congressional House Resolution designating October 1, 2022 as National Ostomy Awareness Day and needs co-sponsors and/or support for this resolution. Contact your Congressperson and ask them to become a cosponsor, by contacting Shahryar M. Baig on his staff at shahryar.baig@mail.house.gov. You can take action here on all of our advocacy campaigns.

These @delta #flightattendants and #pilot were 100% on board to support #OstomyDay2022  – Peenelopie was very excited that the pilot got to hold her! (courtesy Stomagienics)

If You Just Want to Have Some Fun While Raising Awareness

Consider printing out our Ostomy Pouch Character name it, and take pics of it wherever you go Flat Stanley style; send us your pics or post on social media. To make it even easier use our Giphy stickers found here (or search @UOAA_Ostomy)

You can still register for an in-person Run for Resilience Event near you on Saturday (Birmingham is Oct. 8) and join what is often a party atmosphere of music, sponsor tables, food and games – in addition to walking/running. 

Also be sure to wear a stoma sticker from Hollister, the Exclusive Diamond Sponsor of UOAA’s Run for Resilience. Check out all the ways you can celebrate with Hollister.

If You Want to Get More Educated or Educate Others

If you want to get some WOC Nurse level information you’re in luck on October 1st. The WOCN Society is offering an education day event open to everyone free of charge.

For a more Ostomy 101 level of learning use our advocacy tools and infographics as a handout or post online. Feel free to use any of our materials on emotional support, ostomy myths, j-pouches or more.

The day after Ostomy Awareness Day you can also learn more about ostomies and mental health during a Facebook live event hosted by Crohn’s and Colitis Foundation in partnership with UOAA. 

 If You Want to Keep the Awareness Going All Month/Year Long

Here at UOAA we work on National Advocacy all year long. Sign-up for our advocacy action alerts and Monthly E-Newsletter. There is power in numbers, become a national individual member and be counted as an official member of UOAA’s ostomy community. You’ll also get a membership and stoma pin and among other benefits.

New this year, Convatec is planning “Ostober” to focus on ostomy awareness all month long. They are the Platinum Sponsor of our Run for Resilience Ostomy 5k and we’re thrilled to see them keeping the spirit alive all month long.

 

 

Visit our Ostomy Awareness Day landing page for more information this special day. Whatever you choose to do please let us know! If you have pictures, proclamations or stories to share send them to us at info@ostomy.org and don’t forget #OstomiesAreLifesavers