Our Ostomy Story- Chris and Alexa

, , , ,

A couple’s story of Crohn’s disease, caregiving, and family

Our battle with Crohn’s disease began back in the spring of 2006, one week after we started dating in high school. I was 16, and my now husband, Chris, was 17. We first met each other on the tennis court a few years before this- a love we still share to this day. Being just 16 and surrounded by a relatively healthy family, I had never experienced the wrath of any chronic illness, personally or by association. Chris had also been a healthy kid, which is why he and his parents found his worsening symptoms to be so alarming. As teenagers, we didn’t yet realize he had a serious condition that would need managed for the rest of our lives.

His first hospitalization happened the week after he asked me to be his girlfriend. I remember being very surprised and clueless as to why he was in the hospital. He and I practiced tennis together almost every single day, and I hadn’t noticed that anything was wrong. (To fully appreciate this journey, you have to realize that Chris does not complain about anything. Ever. He works really hard and refuses to make excuses- a trait that is both very admirable and very frustrating). Little did I know, Chris had been suffering from severe abdominal cramping, bloody diarrhea, frequent bowel movements, and weight loss for a few months, eventually landing himself a stay in the hospital. After undergoing a full GI work-up including colonoscopy and biopsies, Chris was diagnosed with ulcerative colitis (UC). He was discharged from the hospital the day before my junior prom, and he still put on a tux and attended with a smile on his face. He had joked that he was going to make it to the prom even if he had to bring his IV pole with him.

For the next year, Chris was treated with a mix of immunosuppressant medications, steroids, and blood transfusions without any improvement.

I felt so out of control. Being a patient is tough, and being a caregiver is tough- both in very different ways.

That following spring, he was referred by his local GI specialist to Cleveland Clinic for another assessment. Seeing how severe his disease was even after aggressive conservative treatment, Cleveland recommended he undergo extensive surgery by having a total proctocolectomy with ileoanal anastomosis and creation of a J-pouch with a temporary diverting ileostomy to definitively treat his UC. Chris was only 18 years old.

Chris had that first operation, which was successful, and was thankfully able to have his ileostomy reversed 3 months later. He traveled the long 4 hours back home from Cleveland and made it just in time for my high school graduation. He healed well after that second surgery and was able to begin schooling for diesel mechanics while I went to college. We got engaged before I started grad school, and he got a job working as a diesel mechanic. We then got married at 22 and 23 years old, excited to be finishing up with school and moving back home to start our adult lives. Unfortunately, for the next couple of years, he continued to have a slow progression of the same symptoms he was experiencing before his J-pouch surgery, meaning more severe abdominal cramping, bloody diarrhea, very frequent bowel movements, and weight loss. In addition to these symptoms, he developed a new complication: perianal fistulas. These symptoms persisted, leading to another scope and biopsies confirming a new diagnosis of Crohn’s disease.

Following this new diagnosis we were referred back to Cleveland Clinic for more treatment, which included multiple new medications, steroids, and transfusions. While Chris’s J-pouch surgery would have been somewhat curative for ulcerative colitis, it made it harder to effectively manage his Crohn’s. Chris continued to have this active disease in a surgically constructed reservoir (i.e. the J-pouch) making his condition, and the accompanying complications, very difficult to treat. No matter what medications he tried or how high the dosage, his health continued to deteriorate.

Over the next several years, Chris’s body went on to form a complex network of fistulas, which required multiple procedures for seton placement. He had tried hyperbaric oxygen therapy to help with the healing of his external fistulas and wounds. Unfortunately this treatment did not work.

Our kids have also been involved in everything concerning Chris’s ostomy, particularly in the beginning when it was new.

He experienced constant leakage and stool draining from multiple holes. This had become a nuisance for Chris. He also developed strictures at the inlet of the J- pouch which then resulted in endless ileoscopies for dilation to prevent obstruction. He had spontaneous bleeding due to the inflamed and ulcerated state of his intestines. There had been instances where Chris would start hemorrhaging a few hours after having a scheduled ileoscopy, causing us to rush to the ER in the middle of the night for an emergency ileoscopy to stop the bleeding. This happened on a couple of different occasions, leading to more hospital admissions and ICU stays for low hemoglobin and low blood pressure.

I started to panic with every procedure, wondering if everything would go routinely or if we would be surprised with unexpected problems.

By this time, we were traveling to Cleveland every 2-3 months for scopes and appointments, which became extremely mentally and physically exhausting for both of us. While I realize I can never begin to understand the excruciating pain Chris was experiencing, I was sort of in my own kind of emotional pain in seeing the person I love the most in this world suffer from such an awful disease. While Chris remained totally collected and level headed with each added layer of dread, I was having a hard time sitting back and watching it all happen, knowing there was absolutely nothing I could do but hold his hand in this never-ending nightmare.

I felt so out of control. Being a patient is tough, and being a caregiver is tough- both in very different ways. Luckily, our bond as a couple was already very strong, and we became more solid with each piece of bad news. It had gotten to the point where we would almost laugh about things, because what else was there to do? If we didn’t laugh, we’d cry, and we could not start that.

Something we were blessed with (other than our awesome marriage and a side of humor) was the love of an extremely supportive family. It was very difficult to navigate Chris’s condition as it was, but we had also been going through this while starting a family of our own and both working full time. Not to mention Chris was working a manual labor job while enduring all this misery.. can you imagine? My parents, brother, and sister-in-law stepped in to take care of us, our two small kids, and two pups whenever we needed them. They were available at a moment’s notice whether it was to watch our kids while we were in Cleveland or to help with things around the house that we just physically couldn’t get around to doing. It truly took a village to make sure everything and everyone was cared for, and we can’t even begin to express the love and appreciation we have for them. They always showed up, and having that safety net of support was so valuable, especially during that time in our lives.

Since Chris had tried and failed countless conservative treatments over the course of several years, it was then recommended he have surgery for a diverting ileostomy so that his J-pouch and fistulas could have a chance to rest and heal. Chris was not exactly thrilled with the thought of having an ileostomy, but he had run out of treatment options without any promising new therapies on the horizon. Knowing that an ileostomy was going to be a potential end result based on previous discussions with his care team, Chris was able to process his thoughts and emotions surrounding the upcoming surgery. Honestly, I think having the time to mentally prepare for such a surgery was a huge benefit in how we were all able to cope moving forward.

He had the surgery for a diverting ileostomy in January of 2020, just before the pandemic. We had hoped that he would improve with this surgical intervention, but his fistulas continued throughout that following year. He also developed a pyoderma, which is a large and painful ulcer, on his abdomen right beside his new stoma. As a result of this and the relentless fistulas and strictures, his doctors recommended he have another surgery, a major surgery, to hopefully improve his quality of life. So, one year after receiving his diverting ileostomy, Chris had an abdominoperineal resection (APR) operation. In this long, 8 hour surgery, he had his J-pouch, anus, and perianal fistulas removed. This surgery also meant that his ileostomy would be permanent without the option of ever reversing it. It would be a part of him for the rest of his life.

Our focus is on making something positive out of something that could easily seem like a burden or embarrassment.

It has now been 3 years since his APR surgery and permanent ileostomy, and Chris is healthier than ever (Shout out to the wonderful surgeons and specialists at Cleveland Clinic! We’re so very thankful for you). While the initial thought of living with an ostomy seemed daunting for Chris and for me, we have come to really appreciate everything it’s done for us. Cleveland visits are now just once a year instead of every 3 months, and Chris is only on one medication for therapeutic management. His ostomy is functioning very well and hasn’t given him any problems. Chris can change his ostomy appliance so quickly that it doesn’t even seem like an inconvenience.

Our kids have also been involved in everything concerning Chris’s ostomy, particularly in the beginning when it was new. They have grown up seeing him do bag changes and have loved helping him get all of his supplies ready, and we welcome their questions with age appropriate answers. They were too young to remember how sick their dad was, but we don’t dwell on that part.

Our focus is on making something positive out of something that could easily seem like a burden or embarrassment. They are now 9 and 6 years old and are not ashamed that their dad wears a bag on his belly. When our daughter was in second grade, she actually took it upon herself to read “Awesome Ollie” to her class so she could educate her friends on what an ostomy is (this is an AMAZING kid friendly book we had used to prepare our kids for Chris’s ostomy surgery).

We were very impressed with her confidence and maturity to be able to share this information with a class full of kids. It was all her idea.

We are so grateful for this ostomy and the freedom it has given us. It’s like we have a new lease on life! Chris’s positive attitude throughout this entire ordeal has been such a blessing as well. He has never let his disease dictate his life, and there is so much to be said about that. Chris will gladly talk about his experiences if it means helping someone that is struggling with a similar situation, but he is not one to draw attention to himself. He never brings up how tough or terrible that part of his past was. He is such a wonderful example for our two kids, and I am proud that they will grow up seeing how great life can be despite difficult and less than optimal situations. Having an ostomy or a spouse with an ostomy is certainly an adjustment, but it doesn’t have to be a negative thing. It really is all in your mindset- just ask Chris! Even though Crohn’s is a disease that will never go away, the ostomy has been a life saver.

This is our new normal, and we are so blessed we get to experience it.

Young Ostomates to Gather in Houston for #UOAA2023

, , , , , , ,

Among the general public there is still a perception that people living with an “ostomy bag” or pouch are older seniors or at least middle-aged. Those searching on social media however will soon discover that younger people with an ostomy are not only  visible, but sharing and embracing “ostomy life” in a whole new way.

Allison Rosen and friends at the Waterwall Park close to the Royal Sonesta Houston Galleria, the site of the UOAA 2023 National Conference. 

Many young adults with an ostomy have never had the opportunity to meet another person they could truly relate to.

What if there was a place where online ostomy friends could meet in person, socialize, laugh, cry and just be together? Well, that place is UOAA’s National Conference August 10-12, 2023 in Houston, Texas.  

Attendees of all ages will get to experience a large ostomy product exhibit hall and sign-up to sample products and see a WOC nurse at the free stoma clinic. Former Miss Texas and current J-Poucher Magen Cherry will provide the keynote welcome. 

Ostomy experts will also speak and be on hand to answer surgery-specific questions for people with an ileostomy, colostomy, urostomy, j-pouch or continent diversion. Young adults, along with Caregivers, IBD Patients, LGBTQ+, and kids/parents will be offered even more specialized sessions and tracks.

Young Adult Track 

After its successful debut in Philadelphia, the Young Adult Track is back for this year’s conference! Designed for ostomates in an earlier stage of life, the track features topics like, dating and sexuality, body image, managing school/work, navigating parenthood, exercise, and staying active all while juggling ostomy care and other chronic health conditions. 

Sessions range from formal presentations and panel discussions to off-the-cuff conversations and opportunities to connect with fellow young ostomates. The Young Adult Track offers participants the opportunity to learn new things while forming friendships and bonds that extend well beyond the weekend of the conference.

”If you’re looking for peers in your age range who truly “get it,” look no further — we can’t wait to see you in Houston!” says co-organizer Molly Atwater-Pulisic (Molly Olly Ostomy). The young adult group typically meet informally after hours in the hotel lounge and go on city outings together as well.

You’ll want to stay at the Royal Sonesta Houston Galleria to not miss out and be close to all the action. A special UOAA group rate is available. 

The young adult track is awesome, because we make fast friends and are able to relax and talk openly and casually about personal, ostomy-related topics that are sometimes difficult to share with people in our usual daily lives. -Nate Hadlock

Local Houstonian and ostomy advocate Allison Rosen is helping to plan a Texas themed evening of line dancing, drinks and desserts. “I am looking forward to meeting virtual Ostomy friends in person for the first time! Meeting others who understand I know will be life changing!” Rosen says. 

Young Adult Track attendees will have a dedicated meeting room starting with a meet and greet on the morning of Thursday, August 10 ending with FAQs Saturday afternoon before the closing party. A special Friday night gathering just for the Young Adults is also being planned with track sponsor Hollister. 

If this all feels a bit overwhelming don’t worry you’ll be embraced with open arms. Unofficial social chair Alyssa Zeldenrust has made it her mission to greet and connect young ostomates since first attending the conference in 2011. In a testimonial video she shares why she keeps coming back. “All of us are on our second chance at life, so it’s extra special to all be together and it’s a very joyous atmosphere.”

She’ll also be speaking on Ostomy FAVE Things along with other conference veterans Chloe Moody and Nate Hadlock.

“I’ll be sharing tips, “tricks”, and experiences that have helped me through my medical journey. As many ostomates have done for me since my first conference in 2017, this year my goal is to help others feel welcome and have breakthroughs of their own,” Hadlock says.

Those active on social media may see some other familiar faces such as Kristen Furey, The Furey Fighter. “I’m excited to share my journey with Advocacy and what it has done for me in terms of growth and acceptance with an ostomy!” Furey says. “I am most looking forward to attending my first UOAA ostomy conference and being around so many other people who have similar health conditions and an ostomy! Knowing they have walked the same journey that I have and hearing from them firsthand their experiences with an ostomy!”

Speaking on Parenthood it will also be the first conference for Meghan Brown (@EMC_Brown)  “I am most looking forward to meeting longtime ostomy friends and experiencing my very first conference, as well as hearing some of my closest ostomy friends speak!”

“For my talk, I’m excited to share more about my experiences of pregnancy with an ostomy and what life looks like now with a very curious three year old and wild 20 month old. I’ll shed a little light into the funny but important conversations I’ve had with my three year old about my ostomy, and how we maintain an open dialogue around all things ostomy.”

Molly Atwater-Pulisic will be joined with Collin Jarvis in leading many of the other topic discussions. Check out the full conference schedule. Young Adults between the ages of 18-25 get the special price of $135.00 for all three days. 

Caregivers Track

Partners or caregivers of ostomates are also encouraged to attend UOAA’s National Conference this summer. Register and you’ll be welcomed for all the social events and food and drink opportunities and receive access to the informative Exhibit Hall.

Special sessions are also exclusive to caregivers on Friday August 11. 

The Caregivers Track that morning will feature a Caring for a Male Rap Session and a Caring for a Female Rap Session. 

An important session on Caregiver Stress – How to Cope will be available that morning a well. 

Pediatric Track

The youngest of ostomates and their parents/caregivers will also have a special track at the conference.. This day-long  program is held on Saturday and will be led by pediatric WOC Nurses and ostomy parents. 

Some session highlights include: 

Advice from an Ostomy Parent with Julie Hubbard

Dietary Considerations in GI/Ostomy Patient with Erika Kay, RDN, LD 9:15am to 10:30am Ask the Expert: Gastroenterology Care of the Pediatric IBD Patient with Dr. Allison Wyatt 

Ask the Expert: Surgical Management of the Pediatric IBD Patient with Dr. Rueben Rodriquez

Ostomy Complications and Pouching Techniques with WOC Nurse Maryanne Lewis

Ask the WOC Nurses with Barbara Richardson, Erika Guidry and Sharon Wallace

Exercise and Activities for Children with Ostomies with Tenille and Rebekka Smith

Children between the ages of 5-17 are just $25 and the one-day rate for parents is $125.00

Volunteers from around the country are working hard to create a life-changing experience for the young ostomate community. Register by May 31st to get the early bird discount. Please spread the word, invite a friend and discover your people this August in Houston. 

 

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

, , , ,

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.

Celebrate and Support Ostomy Resilience

, , , , , , , , , , ,

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.

Get Answers and Find Friends at the Virtual Ostomy Symposium

, , , , , , , , ,

By Robin Glover

Ostomy surgery is a life-changing event. As ostomates, we go through things other people will never have to experience. Everybody’s story is different, but we have all shared in many similar aspects of our journeys. We are a unique community of strong and courageous people of all ages and backgrounds.

To celebrate that, United Ostomy Associations of America is hosting the UOAA 2022 Virtual Ostomy Symposium on Saturday, August 13, 2022 from 10:30 a.m. to 5:30 p.m. Eastern Time (7:30 a.m. to 2:30 p.m. Pacific) including breaks.

This symposium will feature a mix of ostomates, j-pouchers, and medical professionals delivering a fun, engaging, and informative day of learning, laughing, and community-building.

Questions you were too afraid to ask will be answered. Questions you didn’t even know you had will be answered.

In all, 22 speakers will be bringing their expertise on a variety of ostomy-related subjects. (And don’t worry, each session will be recorded so if you can’t make it live that day or can’t see all of the ones you want, you’ll be able to watch them later.)

You can find the full list of speakers and the agenda here.

What to Expect

The virtual lobby will be open at 10:30 AM EDT before the speaker sessions begin to chat, troubleshoot any tech issues and explore the agenda. Ticket holders get an email with a unique link to the event. Attendees are encouraged to enter “lounges” organized by ostomy or continent diversion type (and one for caregivers) to chat or meet with others like you. These will be open for the entirety of the event for those who want to pop in and out during breaks.

Sponsor Booths will also be open throughout the event to give ticket holders the opportunity to talk with representatives of ostomy product manufacturers and suppliers ­– and learn about the latest product advancements. Thanks to all our symposium sponsors including Platinum Sponsor Convatec for helping to make this event possible.

The most important participant for this year’s UOAA Virtual Ostomy Symposium is you.

After opening remarks from UOAA leadership, the symposium will kick off on the Main Stage with Louie Green, a standup comic and recent ostomate. He’s going to share his poignant ostomy journey with a bit of welcoming wit.

Next on the Main Stage at 12:40 AM EDT, Joy Hooper’s Ostomy BUZZables presentation will present the newest innovations and ostomy products available on the market. If there’s something new in the ostomy world, you’ll hear about it here.

Educational Sessions 

Throughout the day, Educational Sessions will run concurrently between the Main Stage where you’ll get to hear from wonderful WOC nurses, experienced ostomates, amazing doctors and dedicated advocates.

Presentations will cover everything from sex and intimacy and traveling the world with an ostomy to nutrition and staying hydrated and dealing with hernias. Other session topics will focus on peristomal skin issues, aging in place with an ostomy, affiliated support groups, and secrets of the big four stoma types.

There will also be a special workshop for young adults. Inspiring ostomates Molly Atwater-Pulisic and Collin Jarvis will be co-hosting the conversation about physical activity, relationships, and mental health for ostomates ages 18-35.

Attendees will be able to submit questions for the speakers during the presentations and the speakers presentation materials will be available to access at you leisure.

After these educational sessions be sure not to miss Dr. Janice Beitz back on the Main Stage at 3:55 PM EDT for a presentation titled If You See a Toilet in Your Dreams, do NOT use it! Emotional Support, Quality of Life and Humor. It will look at the power of humor in dealing with emotional challenges while dispelling some myths and misconceptions about ostomies.

The event will come to a close with a special presentation from Magen Cherry, a j-poucher and winner of the 2007 Miss Texas USA competition. She uses her platform to share encouragement and bring hope to fellow ostomates and j-pouchers coming to terms with their new reality. Fun fact: Magen had a colonoscopy three days after being crowned Miss Texas USA!

Connecting with a Caring Community

Of course, there are going to be plenty of great speakers but the most important participant for this year’s UOAA Virtual Symposium is you. By taking part in this event, you’ll be able to connect with a thriving ostomy community (or j-pouchers or any other type of continent diversion) and help us grow even stronger.

As we all know, living with an ostomy or other continent diversion isn’t always easy. It can be isolating. Sometimes even close friends and family don’t want to hear anything about it. There’s fear of the future and worry about existing relationships.

Many new ostomates want to hide it forever and hope no one ever finds out. But, through organizations like UOAA, they’ll find out they’re not alone and that life with an ostomy shouldn’t be something to be ashamed of, but rather that ostomies are life-savers and that you can join others in a celebration of being alive.

This year’s event is going to be awesome. Questions you were too afraid to ask will be answered. Questions you didn’t even know you had will be answered. You’ll get to connect with wonderful people while gaining inspiration and knowledge that could impact the rest of your life – and the lives of others.

As you can see this is not your typical webinar or Zoom call and the $35 ticket (plus $3.88 processing fee) and sponsor support of UOAA (a 501(c)(3) charity) help to offset the costs of hosting this special event.

All of this is leading to UOAA’s in-person National Conference in Houston in August of 2023. The connections you build during this year’s virtual event can open the door to even deeper friendships when we all get to meet each other face-to-face next year in Houston!

The UOAA 2022 Virtual Ostomy Symposium on Saturday, August 13th is going to be a great time and a great experience. And we need you there to make it even better.

To get all the information, learn more about the speakers, or find out how to get tickets, head to the event website.

Twists and Turns of J-Pouch Recovery

, , , ,

By Robin Glover

The recovery process for a j-pouch is just that. It’s a process. It takes time and patience and is different for everyone. For some, it can be relatively easy. For others, it can be a winding path with twists and turns just like the colon that was removed for it.

But one thing is the same for practically everyone: j-pouch surgery offers hope for a return to a life that’s less encumbered by the alternatives. Seriously, who doesn’t want to poop out of their butt again if given the opportunity? Oh, and getting rid of that disease-ravaged large intestine is a plus, too.

What Is A J-Pouch?

In case you’re reading this to research information for yourself, friend or family member, here’s a quick explanation of what a j-pouch is:

Medically known as Ileal Pouch Anal Anastomosis (IPAA) surgery, it involves removing the entire colon and rectum and then connecting the small intestine directly to the anus. The term j-pouch refers to the shape of the “pouch” that’s created when the surgeon folds the small intestine on itself and creates a reservoir to hold waste until it is passed through the anus. It can also be known as an s-pouch or w-pouch based on how it’s surgically constructed. J-Pouch surgery is most often done in cases of ulcerative colitis where there is no disease in the small intestine or as a result of FAP, colorectal cancer or a bowel perforation.

The surgery for a j-pouch almost always involves two or three steps. The first step, and usually the more major surgery, is to remove the large intestine. At the same time, an ileostomy is created that will be used until the small intestine is reattached. This will be a temporary external pouch.

Stages of J-Pouch Surgery

Depending on individual circumstances, the first surgery can also involve removing the rectum and creating the internal j-pouch. However, it can also be its own separate procedure. But either way, the final step is to reverse the ileostomy and connect the small intestine to the anus. At this point, no external pouch is needed and the traditional route of passing stool can resume.

Be aware that the patient has the right to decide between a J-pouch or keeping the ostomy and should know not all temporary ostomies are able to be taken down and not all J-pouches are able to be connected.

Early Recovery From J-Pouch Surgery

It’s an exciting experience when you wake up from the final surgery and see that there’s no longer a need to have a pouch attached to you. What was once your stoma is now a still pretty nasty wound, but one that will heal and become just another proud scar.

Things won’t be working quite yet though. It will be a few days before you actually have a bowel movement. Sometimes it can take longer, but that’s not a big deal. When you’re in the hospital you’ll be monitored and well taken care of. You likely won’t go home until your doctors are sure everything is working correctly, including being able to eat and pass solid food.

Everything that comes out will still be liquid, though. It will be a little bit before you start passing anything even semi-solid. And you might not ever get to that point or only have it happen on rare occasions. There’s nothing unusual about that.

J-Pouch Guide

Diet Right After Going Home

The diet you follow after getting home from the hospital will be communicated to you by your doctor and you’ll probably go home with many guides and resources. Mainly, staying hydrated is very important and avoid raw fruits or vegetables, nuts, whole grain, seeds, or anything else that doesn’t digest in around two hours. Since you no longer have a large intestine, food has much less time to be processed and if you eat a handful of nuts they’re going to come out the same way they went down.

Check the Eating with an Ostomy Guide for a much more complete diet guideline.

But, even worse, it can cause a blockage. Blockages are the bane of a j-pouch’s existence. You need to be careful about what you eat (typically called a “low residue” diet) and chew your food thoroughly. Chew extra. And then some more. Take small bites and don’t take any risks right away. Introduce new foods slowly.

NOTE: Your doctor or dietician will know the best foods to eat and what to avoid for your specific needs. Always follow their directions before anything you read on the internet.

Getting To Know Your J-Pouch

It can take a while after surgery to completely adjust to your new plumbing. You’ll learn what foods are “safe foods” and which to avoid. You’ll also learn about how your j-pouch behaves and how it affects your daily life.

For example, you’ll start to get an idea of how many times per day you’ll go to the bathroom and what consistency you can expect. You’ll also learn what each sense of urgency means and when you need to go to the bathroom right away and when you can hold it. It will feel like you need to go to the bathroom a lot and you’ll probably actually need to at the beginning. But, over time, your j-pouch will stretch and grow to be able to hold more before needing to be emptied.

Ideally, after everything settles down, you will only go to the bathroom 4 to 8 times a day and it will be a simple and quick emptying process.

You’ll Experience Butt Burn

Speaking of going to the bathroom a lot, you may experience what is known as “butt burn.” This is because, on top of going to the bathroom more often, without a large intestine your stool will be much more acidic from digestive enzymes.

It’s necessary to take special care and make sure everything is extra clean. A bidet is a great idea because rubbing with toilet paper can also cause irritation. There are also many creams and lotions you can use to soothe and protect. Zinc-based lotions are a good place to start. And get some disposable gloves while you’re at it.

You may go to the bathroom up to 20 times a day (or more) and experience irritation from going so much. But, it will get better as you learn more about your j-pouch and develop processes that work best for you. In the end (no pun intended), you’ll get to a point where you’re comfortable and know how to manage it like an expert.

Ideally, after everything settles down, you will only go to the bathroom 4 to 8 times a day and it will be a simple and quick emptying process.

It’s Not Always Easy

As mentioned, j-pouch recovery is a process. At the beginning, there will be accidents (typically nighttime) and discomfort. It’s a whole new way of digesting food and your body needs time to adjust. And you will need time to adjust to it too. It’s a major change.

Be aware of possible complications such as pouchitis and tell your doctor if you have more frequent or blood in your bowel movements.If you have a j-pouch or need one, you’ve already been through a lot. You know you’re resilient and can make it through almost anything. This is just another step in your journey.

Don’t let any of this discourage you. There’s a reason you decided to get a j-pouch and there’s a wealth of resources and support out there to help. Everything you will experience has been experienced before and the j-pouch community is always ready to help. But keep in mind that social media is often a place to vent so you might see more negative than positive posts.

So focus on the good, be patient, and look forward to enjoying pooping out of your butt again!

 

 

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