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

 

Double Baggin’ It: A Tale of Two Best Friends Without Buttholes

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Written by Danielle Gulden and Joe Teeters

We all know that “laughter is the best medicine”!  This year’s Ostomy Awareness Day Champions, Danielle Gulden and Joe Teeters, not only love that phrase, they live it! These two best friends, and co-founders of Double Baggin’ It are IBD warriors and permanent ileostomates. They’re also comedians, speakers and Two Best Friends without Buttholes!  They truly believe in the power of laughter, humor, advocacy and awareness! Which is why they LOVE Ostomy Awareness Day!  For them, every day is a chance to raise awareness.  But Ostomy Awareness Day is a special day to reflect and celebrate their life-saving surgeries and the lives they were given back! They share their stories so that future, new and veteran ostomates know that they are not alone!

Danielle and Joe have each been living with Inflammatory Bowel Disease for over 29 years.  Although their IBD and ostomy journeys have been quite different, their positive outlook on life and ridiculous sense of humor are the same!

Prior to 2014, Joe and Danielle had no idea the other existed…so, let’s rewind a few decades and learn about the journey of each of these Two Best Friends Without Buttholes!

Growing up, Danielle was a very healthy child, an extremely outgoing teen, and an adventurous free spirit! Spontaneity was her specialty, and travel was always her first love!  Joe, on the other hand, always had “poop problems.” He was always pooping and known as “Joe the Pooper” by his siblings. Like Danielle, he was an outgoing, active, and social teenager.

Fast forward to Danielle’s late teens and early 20s. By the time she was a sophomore at The Ohio State University, Danielle’s health drastically changed! She saw her busy social life dissolve; she’d make plans and have to cancel. Spontaneity was no longer an option, and the idea of traveling was now a nightmare!

Danielle had to drop out of classes because of her poor health.  Her symptoms and pain were becoming harder to ignore. She was in the bathroom around 25 times a day and became extremely malnourished and anemic.

You can hide your bag, but don’t ever let your bag hide you!

After being misdiagnosed for 6 years with a gluten intolerance, a colonoscopy in April of 1999 showed severe ulcerative colitis.  From 1999 until 2007, Danielle’s life was a constant barrage of colonoscopies, radiological tests, bloodwork and pharmaceutical cocktails.   She did the research and finally decided to have ostomy surgery.

After high school, Joe enlisted in the Naval Reserves. He passed the military physical and was cleared for training.  While away, Joe’s poop problems became more pronounced, and the pain was gradually becoming more than just an annoyance.

When he returned home after 5 months, he was in the best physical shape of his life. On the outside he looked healthy, but inside something was wrong. Joe was initially diagnosed with irritable bowel syndrome, then a colonoscopy in 1993 lead to his diagnosis of severe Crohn’s Disease. Two years later he had his first intestinal resection. Joe’s Crohn’s continued to advance, and he had a second intestinal resection in October of 2004.

Back in Cleveland, Danielle was super excited for her ostomy surgery! She was ready to stop being a prisoner to her bathroom and get back to living her life to the fullest! On April 30th, 2007, Danielle had her total proctocolectomy with end ileostomy at the Cleveland Clinic. It was truly one of the greatest days of her life! She high fived every single person on the way to the OR.

From day one, she embraced her ostomy, and her new life as an ostomate. Within a month or two of her surgery, Danielle was back to exploring and enjoying her pre-sickness hobbies and joys. She traveled, hiked, camped, swam, went to concerts, and amusement parks. Life was good again! She also joined the Cleveland chapter of the UOAA and eventually became active on their executive board.

Fast forward a few years, and 120 miles away in Columbus, Ohio. Within a year of his second resection, Joe’s rectal Crohn’s disease became severe, and his rectum very strictured.  After consulting with his GI and surgeon, Joe had a full proctocolectomy with end ileostomy on December 27th, 2012.

Joe’s recovery process and post-surgical experience was very different from Danielle’s. In addition to becoming an ostomate, the amount of bowel he had lost from three surgeries left him with Short Bowel Syndrome. It took the better part of a year to fully recover and return to pre-surgery activities.

During Joe’s recovery, a Facebook support group for ostomates became a lifeline. It was a great source of inspiration and hope, and a wonderful place that showed him he was not alone. Later, he sought out Central Ohio United Ostomy Association support group and became a member of the organization.

By now, you must be wondering how the heck these Two Best Friends Without Buttholes finally met.  As you can see, they have traveled separate but similar paths in their battles with Crohn’s and ulcerative colitis.  Their paths crossed in that Facebook support group mentioned earlier, when Danielle posted that she and her family were relocating to Columbus, Ohio. Joe, being a Columbus resident, and fellow ostomate, reached out and introduced himself. After meeting in person, in late 2014, at their local UOAA Affiliated Support Group, they started hanging out after the meetings. They soon discovered that they had a very similar outlook on life and shared a ridiculous sense of humor, and they wanted to use that to help others. A best friendship began…and slowly but surely, their vision for Double Baggin’ It was coming together. They decided to go to the United Ostomy Associations of America’s National Conference in September of 2015. There, after meeting over 400 ostomy patients like themselves, they decided to stop dreaming and start making their vision for Double Baggin’ It a reality. Double Baggin’ It was born, that week, when they filmed their first DBI video on a rooftop in downtown St Louis, Missouri.

Through Double Baggin’ It, Danielle and Joe use their humor, wisdom, and stories to connect with and support other people living with ostomies and Inflammatory Bowel Disease. They advocate and raise awareness at the local and national level for both United Ostomy Associations of America and the Crohn’s and Colitis Foundation.  Danielle and Joe also visit with their legislators yearly in Washington, DC to share their voices and stories.

You can find them on Facebook, Instagram, TikTok, Twitter and YouTube (@DoubleBagginIt) where you can watch them raise awareness through shenanigans and ostomy-bombing (placing an ostomy bag on a statue, landmark, anywhere they see fit!) They also can be found speaking at IBD and ostomy conferences, support groups, camps, hospitals and classrooms – sharing their stories and spreading laughter through improv. Danielle and Joe know that not everyone is comfortable rocking out with their bags out – and that’s totally ok! What these Two Best Friends Without Buttholes want to make perfectly clear, is that “You can hide your bag, but don’t ever let your bag hide you!”

Join with this year’s Ostomy Awareness Day Champions in spreading awareness by following Double Baggin’ It and UOAA on social media and visiting the Ostomy Awareness Day page to keep up to date on all the latest events.

 

Jessica’s Ostomy Story: Making an Invisible Illness Visible

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Words and Photos by Jessica Miles

Living with a permanent ostomy can bring on significant changes in one’s personal, social and professional life. My biggest fear around having my ostomy surgery was leakage, particularly in public, skin breakdown and altered body image. There was a lot of trial and error in the beginning, but I have found what works for me as well as the confidence to share about it. I have always been an empath and very compassionate, however, I have now found a new passion for helping others (through my surgeon and on social media) learn how to manage their ostomy as well as how to cope with their new life. If you are willing and able to adapt, you can do anything!

In 2016, after years of unexplained symptoms, countless procedures, hospitalizations, tests, and a couple of misdiagnoses, it was confirmed that I had a genetic connective tissue disorder caused by a defect in the protein collagen. I was diagnosed with Classical type Ehlers-Danlos Syndrome. More than 90% of people with Classical EDS have mutations in the COL5A1 or COL5A2 gene. I have a mutation of the COL5A2 gene. The condition is inherited in an autosomal dominant manner. Treatment and management is focused on preventing serious complications and relieving symptoms.

Classical EDS is associated with skin hyperextensibility, joint laxity, fragile blood vessels, joint hypermobility, migraines, joint and muscle pain. Some individuals with this subtype have a deformity of heart valves and may experience a dilatation of the aorta. In cEDS there is also an increased risk for aortic dissection. cEDS patients are prone to hernias and organ prolapse, as well as comorbidities such as autonomic dysfunction…which regulates heart rate, blood pressure, temperature, pupillary response and digestion.

I ended up having multiple surgeries over the past four and a half years due to intestinal dysmotility, prolapses and hernias, resulting in a port and a permanent ostomy. I now, have an ascending end colostomy. While I prepared for years for the possibility of having one, I realized nothing truly prepares you for the actuality of living with a bag on your belly for the rest of your life. Though little by little, the stigma took a back seat to the reality that life with an ostomy can be just as good, if not better for some, than life without one. I suffered constantly from abdominal pain, nausea, vomiting, bloating, constipation, bowel obstructions and malabsorption. While I still struggle with many debilitating symptoms of my disorder, I am now able to eat, gain weight and go to the bathroom regularly. Something I always took for granted until I was no longer able to do so.

My symptoms aren’t usually visible to the untrained eye, but they are life-altering for me.

Though I have a constant physical reminder of my condition in the ostomy, to the rest of the world, mine is a largely invisible illness.

It’s hard to describe how I feel to someone who has no idea what daily life with a chronic illness is like. I feel awful on the inside but look perfectly fine on the outside. Putting on a brave face for all to see has become a habit. My symptoms aren’t usually visible to the untrained eye, but they are life-altering for me.

I’ve learned to take everything step by step and day by day. My goal is to break down the stigma of ostomies, and while it’s not always easy, to show that one can still thrive and live a happy life with chronic illness. Due to pain and fatigue, I’ve learned to budget my energy, and while I may function normally one day, I usually need to rest the next. It’s all about finding balance. I am blessed to have an amazing support system in my husband and two boys, the rest of my family and friends.

For me, photography has been a powerful way to document my health journey and what I experience every day. It helps me see my progress, as well as setbacks in a cathartic way.

I am a registered nurse nationally certified in inpatient obstetrics. Unfortunately due to my illness, continuous surgeries and hospitalizations, I made the most difficult decision of my life and gave up the profession I worked so hard for and one that was a huge part of my identity. I am also an award-winning, internationally published photographer, focusing primarily on birth photography and self-portraiture. I found a new purpose, capturing laboring women and their deliveries combined both of my passions: childbirth and photography.

As a photographer, I believe that art enhances the well-being of individuals, society, and our environment and that artists have the power to heal, inspire, provoke, challenge, and offer hope. For me, photography has been a powerful way to document my health journey and what I experience every day. It helps me see my progress, as well as setbacks in a cathartic way. Photography allows people to see different perspectives and can be used as a tool for personal healing and positive change for many while nurturing creativity and self-expression.

My favorite quote is by the artist, Frida Kahlo. “At the end of the day, we can endure much more than we think we can.” I have definitely found this to be true and learned I am much more resilient than I ever thought I was. My illness has caused me to know myself better, which keeps my work honest and true. In the process, you truly meet yourself, which makes for better, more authentic work.

Celebrate and Support Ostomy Resilience

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By Robin Glover

The Run for Resilience Ostomy 5k is set to return for its eighth year beginning on Ostomy Awareness Day, October 1, 2022. This year’s event will feature both in-person races around the U.S. and the worldwide Virtual Ostomy 5k. Individuals and teams will be running, rolling, or walking to raise money and show their support for the critical programs and services of United Ostomy Associations of America (UOAA).

Ostomies Are Life-Savers

No matter their story, there are two things all ostomates have in common: incredible resilience and a life saved or much improved by ostomy or continent diversion surgery. The Run for Resilience 5k is a celebration of that. And while every participant can get a run t-shirt with “Ostomies are Life-Savers” emblazoned on the front, each of them have their own stories and reasons why.

For Sydney, a 23-year-old living with an ileostomy, she’s participating and fundraising for the Virtual Ostomy 5k to share the story of how ostomy surgery saved her life. She also wants to serve as an inspiration to other young people facing similar challenges and let them know they can “live the life they want because of the ostomy bag” and not in spite of it. Sydney exemplifies the resilience of the ostomy community.

Liz exemplifies that resilience, too. A month and a half after being diagnosed with bladder cancer, she underwent a radical cystectomy (bladder removal) with a total hysterectomy and stoma placement. Liz is now an advocate who wants everyone to know that her urostomy saved her life. She and a fellow UOAA Support Group leader are hosting a Virtual 5k walk in Cincinnati  because “we are living proof that ostomies are lifesavers and that you can have a fulfilling life with an ostomy.”

The need for an ostomy or other continent diversion isn’t always directly due to a medical condition. Stefphanie was hit by a drunk driver and underwent eleven surgeries in the two weeks following the crash and required both an ileostomy and a mucous fistula. Though hesitant to talk about it at first, she’s now thriving and wants to share her story to inspire others.

If you don’t want to run or walk yourself, consider shining a light on this resilience by supporting the fundraisers of people like these.

In Person Events Are Back This Year!

In addition to the Virtual Ostomy 5k which can be held anywhere by anyone, in-person Run for Resilience 5k events are back this year!

These events are family-friendly gatherings and a chance to share ostomy awareness in communities all around the country. Most events take place on beautiful parkland or waterfront trails. They also all feature an opportunity to visit with ostomy product representatives in person and visit other event sponsor tables. Race participants will also receive a goodie bag with promotional items and educational materials.

Don’t worry if you are not in running shape ­– do what you can. Walkers outnumber runners at many of these in-person fun runs. More serious runners looking for an event to attend however may want to travel to the Durham, North Carolina Run for Resilience Ostomy 5k as it takes place on a timed and certified 5k course.

Past participant Lianne Weller shared what makes these events special, “The 5k race allows other ostomates to build confidence and breakdown barriers to getting back into physical shape; going one step closer to their goal. I feel more confident and less self-conscious because I’m surrounded by individuals who have all gone through similar obstacles.”

As envisioned by the 5k founders, all locations will get an optional ostomy pouch provided by Exclusive Diamond Sponsor Hollister. Non-ostomates are encouraged to wear their ostomy pouches during the race. (Don’t worry. They’re easy to put on.)

The Arizona Run for Resilience Arizona 5k will have a great new location in Scottsdale on October 1st, 2022, with a 5k run/walk and a fun run for the kids.

The newest in-person event is the Miami, Florida Ostomy 5k taking place at the University of Miami Campus in Coral Gables on Saturday, October 1st, 2022, from 9:00 am to 3:00 pm. Organizer Ana Restrepo says the event will include food, drinks, games, giveaways, and more.

Other in-person Run for Resilience 5k events being held across the country in celebration of Ostomy Awareness Day on Saturday, October 1, 2022 are:

Vancouver, WA

Nashville, TN

Boise, ID

Birmingham, AL (October 8th)

(Please follow each individual link to get more information about times and types of races.)

 “I Intend to Be Victorious”

For every person living with an ostomy or other continent diversion, there’s a story of resilience to go along with it. A virtual participant who goes by Poo and Friends, is working to take their life back one step at a time and they “intend to be victorious.”

You can learn more about other participants of each race location or the worldwide virtual by clicking on the circle above their name and reading their story.

Don’t forget to click “Load More Fundraisers” to see them all, including Tanya who’s one of the many wonderful Certified Wound Ostomy Nurses (CWON) and Wound Ostomy Care Nurses (WOCN) taking part in the 2022 Run for Resilience Ostomy 5k.

Share Your Story Too

Are you someone who wants to help break the stigma around ostomies and be an inspiration to others? You’re encouraged to sign up, create your own fundraiser, and share your story. After all, the story of your journey can be what helps someone else make it through theirs.

To participate in the Virtual Ostomy 5k and get this year’s awesome Ostomies Are Lifesavers T-shirt in time for Ostomy Awareness Day you have to register by September 9th.

  • Run, walk, roll or pedal a 5k (3.1 miles) route of your choice. You can even use a treadmill!
  • Take pictures of yourself during your race and email them to info@ostomy.org or message or tag UOAA on Facebook, Instagram, Twitter, LinkedIn or TikTok
  • Hashtag your photos with #OstomiesAreLifesavers and #RunforResilience

Friends, family, members of the medical community, and anyone else who wants to support ostomates and celebrate their resilience are also encouraged to donate or create their own fundraiser. Fundraisers will receive special promotional items depending on how much they raise.

Help Support UOAA

Funds raised during the 2022 Run for Resilience Ostomy 5k will support United Ostomy Associations of America (UOAA), a 501(c)(3) nonprofit organization that provides national advocacy, support and resources for the 725,000 to 1 million Americans who have had or will have ostomy or continent diversion surgery. These surgeries are lifesaving and have allowed many people to return to living a healthy life.

To find out more about the Run for Resilience Ostomy 5k please visit www.ostomy.org/5k.

 

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