Tag Archive for: stoma

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.

 

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.

Get Answers and Find Friends at the Virtual Ostomy Symposium

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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.

My Life with an Ostomy- Josh

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Are you a new ostomate? Or a soon-to-be ostomate? No matter how far you are in your ostomy journey, adapting to your new situation is an inevitable part of the process. Talking to others who have already been in your shoes can help you in adjusting to this time of your life. That’s why we asked Josh Nelson, the first active-duty U.S. Airforce Pilot living with an ileostomy, to share his story and his experience with his ostomy journey to give insights on how getting an ostomy can be just the beginning of an exciting new chapter.

Before surgery

What was your life like before your ostomy surgery?

I was diagnosed with ulcerative colitis in November of 2017. Throughout the next year after my diagnosis, I tried maximum medical therapies starting with oral medications, then biologics, and then transitioned to combination therapies with biologics. Unfortunately, my body just did not respond to the medications, and the disease just took over my life. If you want to talk about quality of life with ulcerative colitis before I had the surgery – I didn’t have one. I was 145lbs. I was having 18 to 20 bowel movements a day. I wouldn’t leave my house. I knew where every bathroom, rest stop, and gas station were from my house to where I work. Any time I did leave the house, the only thing on my mind was, “Where’s the bathroom?” in case I had that sudden urgency to go. My wife and daughters left me alone. They wouldn’t even ask if I would go with them anywhere because they just knew I did not want to go anywhere. I had no quality of life. I was a prisoner in my own home, and that’s no way to live your life.

How did you feel when you learned you would be having ostomy surgery? What questions of fears did you have?

I made the decision to have an ostomy surgery in November of 2018, and I had about three days’ notice before the surgery was going to take place. The staff at the University of Minnesota Medical Center, where I was inpatient for 30 days prior to surgery, did a great job of introducing what life with a stoma will be like. My questions were, “What is a stoma?” “What are the appliances that I’m going to have?” “How do I care for this thing, and how do I recover?” and  “How do I slowly adapt to having an ileostomy and then getting my life back?” The WOC nurses were great, because they would just simply start to explain, “Oh, here’s what a wafer or barrier looks like,” “Here’s what a pouch looks like,” “Here’s what some of the accessories are.” They also explained, whether it’s ileostomy, colostomy, or urostomy, people do go on to live fully functional lives.

I definitely had some goals, but I had no fears when it came to having the surgery. I mean, okay, fine – I had maybe a couple fears of having surgery, but the stoma itself I was not afraid of. The reason for that is because I was kind of at my lowest of lows, and I thought to myself, “How could this be any worse than what I’m dealing with right now?” I remember my surgeon and the medical staff told me that once the surgery was done, I would no longer have the pain, and each day moving forward I could start to focus on getting my life back.

What advice do you have for people who are considering ostomy surgery?

My advice to anybody who is considering having the surgery is to keep an open mind. It will take some work. You will need to adapt to what you have. That means taking care of yourself physically, mentally, and emotionally because it is a step-by-step process. It is a big transition, but I’ve done everything I could to make sure my quality of life has improved. I do not regret my decision one bit. I have my life back and that’s what I think is most important.

Coming home

What was your experience like right after your ostomy surgery?

I had about five days in the hospital after surgery, and during that time I was focused on recovery, protecting my abdomen, and getting my strength back. The nurses did a great job of explaining step by step what it takes to change out the pouch and care for my stoma. Before I left the hospital, I needed to make sure that my pain was under control, starting to move around, and understood how to change my appliance by myself.

What were your goals after your surgery?

I focused on transitioning to home life again, figuring out how to slowly heal my body, and how to start eating foods again.

My goals were:

  1. Getting healthy food into my body so that my body can recover.
  2. Finding out what schedule I should be on for changing out my appliance.
  3. Observing my stoma area regularly to keep my skin healthy, prevent skin breakdown, and make sure that my stoma was healing properly.

What would you tell someone else returning home from their surgery?

  • Don’t be afraid of touching the stoma because your stoma doesn’t have any nerve endings you can feel.
  • It’s extremely important to have a solid understanding of how to change your pouch and ask for products before you leave the hospital.
  • Your WOC nurse will probably explain that what works best for you in the hospital may change after you go home and are healing up. Initially, it might be multiple times a week that you’re changing your whole appliance out because your abdominal area might’ve been swollen from the surgery, and as it starts to reside some of those wafers might fit differently.
  • Everybody’s different. Everybody responds to products differently. Those first couple of weeks to a month is just trial and error to find out which products work best for you. After you figure out your change routine, your quality of life can start to improve. You no longer need to worry about having multiple leaks or having multiple issues with your appliance, and you can start to focus on making other goals for your life with an ostomy.
  • Just take it day by day. Don’t think of the end state right away because it’s going to take time to get there. Create small goals on a day-to-day basis and then think long term and how to get there. It’s definitely a marathon; it is not a sprint. You’re going to learn something new every single day until you get comfortable living your life and understanding how to handle your ostomy.

Managing life with an ostomy

How has your life changed now that you have an ostomy?

I’ve had my ileostomy for over three years, and I can honestly say I haven’t looked back or had any regrets whatsoever to surgically remove my colon. I try to tell people my worst day as an ileostomate far exceeds my best day ever living under the umbrella of Inflammatory Bowel Disease. I am no longer bound by any type of medication. I have no special diet, nor do I have any restrictions, and my quality of life is through the roof. I could not be happier, and I do not regret the decision one bit whatsoever. But how did I get there?

First off, I accepted the fact early on that I was going to have an ileostomy for the rest of my life because it was a decision I made for a better quality of life. After accepting it, I could focus on moving forward versus dwelling on the “how’s” and “why’s” with ulcerative colitis.

Secondly, after trying multiple different products, I came across a Coloplast product that worked really well for me. Once I found the product that worked well for me, that gave me the confidence to continue moving forward with my life and not have to worry about having leakage or skin issues. I have a couple routines, I’ll change my pouch no more than twice a week, but no less than once a week. I observe how the wear and tear of my wafer and appliance is working.

On top of that, I wanted to do everything that I could to make sure that I am living the best life that I can. I made some personal decisions, such as eating better and taking care of myself. I exercise quite a bit, and I try to eat fairly well. I try to focus on eating healthy foods so I can get the nutrition that my body needs.

What are some other tips you want to share about managing life with an ostomy?

It’s important to understand that this affects everybody differently, and it’s up to you to determine what works best for you to adapt, overcome, and live your life with any type of ostomy. I reached out to local support groups, and I think that’s extremely beneficial because you get connected with like-minded individuals. No matter whether they have a colostomy, ileostomy or urostomy, you can touch base with them and share your fears and concerns. A lot of these people have lived decades with their ostomy, and they’re proof to you that you probably can too. Finding that help and resource is extremely beneficial in helping you understand how to navigate life now that you have an ostomy and what’s out there for you.

 

I hope this helped you to understand what it was like to be diagnosed with the disease, have a permanent ileostomy, and how I live my life moving forward. Thank you! -Josh

 

 

*Josh has received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare professional about which product might be right for you.

At Coloplast, we strive to provide innovative solutions to support people with intimate healthcare needs and make their lives easier. Now, we’ve got an app for that!

If you’re looking for additional support during your ostomy journey, download MyOstomyLife by Coloplast® Care. The app is designed to help you be successful and build confidence in managing your ostomy by providing you with personalized tools and resources for your daily life with an ostomy.

With MyOstomyLife, you can create a digital stoma journal to track your pouching changes over time and easily download to share with your nurse, if requested. The app also provides you with educational resources offering reliable product and lifestyle advice, tips customized to your ostomy type, and inspirational videos from other ostomates like Josh.

You can also easily contact one of our Coloplast Care® Ostomy Advisors for product and lifestyle support within the app. We’re here to help!

Download MyOstomyLife for free on your smartphone or tablet today to get started!

Have any questions about the app? Visit Coloplast® Care at www.ostomy.coloplastcare.us or call

1-877-858-2656.

Information provided in the app and from Coloplast® Care is for educational purposes only. It is not intended to substitute for professional medical advice and should not be interpreted to contain treatment recommendations. You should rely on the healthcare professional who knows your individual history for personal medical advice and diagnosis.

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

 

Justin’s Ostomy Story: Service and Happy Resilience

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Finding Humor in life with an ostomy and IBD

My name is LTC(R) Justin F. Blum and I had my initial ostomy surgery 29 years ago and my rectum removed six years later.  These surgeries were done because of an ulcerative colitis diagnosis that lead to colon cancer.

During the 1980s, I had many colonoscopies and a litany of medications, the Army assigned me to duty stations in Kentucky, South Carolina, Birmingham AL, and Fort Monroe VA. I started with 20mg of Prednisone per day and that went up to 240mg in the fall of 1992.  During that following winter, I made an appointment with an Army gastroenterologist at Eisenhower Army Hospital, Fort Gordon GA.  After the exam, he told me I needed to have ostomy surgery. I knew what an ostomy was, I raised

Still a tanker at heart!

my voice and said, “The only way I will have ostomy surgery is if my back is to the wall and I have one foot already in the grave”. Little did I know in one year I would be having that surgery. I was bleeding profusely while taking 240mg of Prednisone per day. My last colonoscopy showed that I had a large black spot on the transverse part of my colon.

My doctor immediately scheduled me for ostomy surgery at the end of February 1993. I was in the hospital for two weeks and proceeded to convalesce at home for 30 days. Three weeks into the leave, my wife and I tried having sex for the first time as an ostomate. My bag ended up going where no bag has ever gone before and probably had a better time than we did. After some maneuvering, life did get better! I reported back to duty in Birmingham AL after convalescent leave was over. I was eventually given a J Pouch which I had for four years.

My years with IBD and now an ostomy showed me that it takes a village to obtain a good quality of life.

The next few years living with my J-pouch were horrible. Despite taking 15 hospital strength Imodium per day, I was still defecating 20 times per day. I continuously was sore on my bottom. I would develop leaks and I ended up having to wear pantyliners in my underwear. When I retired from active duty in August 1996, I immediately started my second career as an Army JROTC Instructor in Bennettsville SC. I continued to go to the bathroom quite frequently and in the spring of the following year my daughter, who was six at the time, wanted me to play horsey with her and take her around the block. I bent down half in tears and told her that “daddy can’t play horsey because he is too sore on his bottom”. I immediately went to talk to my wife and we both agreed it was time to get back to having an ostomy bag. That summer at the Columbia SC Veterans Administration hospital, I had my third surgery to restore my ostomy due to my poor quality of life with the J Pouch. On the positive side, since I’ve had an external pouch, the veteran’s administration awarded me 100% total and permanent disability. I spent the next 23 years as an Army JROTC Instructor.

By the Fall of 1997, I was ready for my first formal engagement with my ostomy. The NAACP was conducting its annual scholarship banquet and I was one of the evening’s speakers.  I made a very big mistake on the Saturday morning of the event by eating two packets of oatmeal for breakfast. I then went to a local bowling alley with my 6-year-old daughter for a birthday party. At the party, I ate too much popcorn!   That evening my wife and children attended the dinner and I was dressed in my brand-new army dress mess uniform. I was sitting on the stage at the head table when it was my time to give remarks. Once I was finished with my remarks I looked down and I thought I had spilled some water on my lap. After a closer look, I realized that that was not water but wet feces seeping through my lap. I immediately got up and my wife and I proceeded to the nearest restroom. In the men’s room, my wife was straddling me with her body trying to clean off the feces from my pouch with one hand and trying to put on a new ostomy bag with the other. During this time three individuals came into the restroom and became startled because they thought we were having sex on the floor!

From 1997 to 2002 I would experience a lot of burning, stinging, and itching around my stoma. Unfortunately, I did not have access to an ostomy nurse at any of the two hospitals where I lived in Florence SC. To my good fortune, a new assistant WOC nurse was assigned to Carolinas Hospital. I called the nurse the next day and told her about the problems I was experiencing on my skin. She immediately asked if I could come in the next day for her to examine my broken skin. That next day she examined my skin and applied Nystatin Powder to the inflamed areas. Within two days the burning, stinging, soreness, and red skin started to heal very quickly.

Despite the ostomy pouch I worked very hard my first few years and to my happiness in 2003, was named the Army Junior ROTC instructor of the year for the entire worldwide JROTC system that consists of over 5000 instructors. In August of 2010 I received a letter from Cindy Norris, Carolina’s Hospital WOC nurse who enclosed an application for the ConvaTec sponsored Great Comebacks program. The Great Comebacks program identified ostomates that also accomplished acts in their lives of giving back to others. I mailed the application back for processing. The application highlighted my time with IBD and then in 1993 acquiring my ostomy while the whole time serving my country as an officer in the United States Army. In addition, in November 2009 I was promoted to the rank of full Colonel in the South Carolina State Guard. I received a phone call from former NFL Placekicker Rolf Benirschke with the great comebacks program. He told me I would be the recipient of the Tony Snow Award for Public Service. The Tony Snow Award was annually given to an individual who has an ostomy and performed years of public service to our nation.

In 2010 and 2011 I was honored to be recognized with several awards.  I was named the 2010 volunteer of the year for South Carolina, the Tony Snow award winner, and in the summer of 2011, I was named for the second time the Army JROTC instructor of the Year. South Carolina Representative the Honorable Jim Clyburn recognized me on the floor of the House of Representatives in the summer of 2011 for these mentioned achievements while having an ostomy.

Eight years later I retired after 23 years as a JROTC instructor for a total of 44 years in uniform. My first act as a retiree was to apply to become a member of the United Ostomy Associations of America’s Board of Directors. To my good fortune, I became a board member and will have served a total of four years upon the conclusion of this tour of duty.

Justin at UOAA’s National Conference in Jacksonville , FL in August 2013. He now serves as a member of UOAA’s Board of Directors.

Over the four years, I was diagnosed and experienced neuropathy in conjunction with my ostomy. I was first put on a regimen of three 800mg tablets of Gabapentin per day which lasted six months. Not feeling any relief from the pain my doctor said we should try acupuncture. Apparently, the ears are where the acupuncture needles went because it was a central place for the pain sensors around my stoma.  I was on acupuncture for about 3 months and unfortunately, I did not see any relief. My doctor prescribed Lyrica, which is a derivative of Gabapentin. I started with one tablet per day now I am up to three tablets after two months. My pain levels have gone down considerably and fortunately I have been able to start exercising again in moderation.

My years with IBD and now an ostomy showed me that it takes a village to obtain a good quality of life. My wife Leah, who I refer to as my “Chief of Staff” is the most important person in my village. She stood by my side during four surgeries and all the years of total discomfort. In addition, if not for my caring and loving wife, I never would have gotten through the transition from non-ostomate to being an ostomate. She is my go-to person for any of my problems and she is both sympathetic and empathetic to those problems. She also stood by my side during countless tours of duty with the Army bringing her continually farther away from her home in New Jersey. Ten years prior to my initial surgery, in 1993, my father died at the age of 61 from colon cancer that spread to his liver. My ostomy surgery gave me a second chance to live because I was a prime example that ostomies save lives! If I did not have my proctocolectomy, my young wife would have become a widow with three children all under the ages of seven.

I am also most fortunate to have three WOC nurses in my life: Joy Hooper, Donna Sellers, and Joanna Burgess-Stocks. I can contact any of those three nurses at any time of the day or night, especially Joanna, if I am having problems with my ostomy/neuropathy. A healthy support system is needed for anyone inflicted with these lifetime conditions. I have learned to always look at the positive side of life throughout all those years I had IBD and now my ostomy. Today I counsel individual ostomates who are having problems adjusting to their ostomy and speak to UOAA Affiliated Support Groups around the country via Zoom and share my story and listen to theirs. Remember, you’re not alone!

Kya’s Story

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There’s no bond more important than the one with your own body. ConvaTec helps you create a healthy bond with yourself, your stoma. And then, with the world around you.

We want to show the world that people living with Ostomies have deep, beautiful nurturing relationships with everyone and everything around them.

This is Kya’s story: Coming out of the hospital postpartum and post-surgery, I honestly never thought I could never go swimming again. I never thought that I could get back to my normal life, I never thought I’d be my normal self. Turns out, I’m a better version of myself. I’m stronger and with Healthy Bonds, I am doing so much better. This is my life now. I used to think once I got an Ostomy that date nights would be stressful and less romantic, but I couldn’t have been further from the truth. Happy anniversary, baby.

 

Editor’s note: This blog/video 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.

So You’re Getting an Ostomy

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By Robin Glover

Oh no! An ostomy! You’re going to be pooping or peeing into a bag attached to your stomach?? Your life is over, right? No more dating. No one will ever like you. Children will run from you! It’s so gross!

Don’t worry. We’ve all been there. As great as they can turn out to be, the idea of getting an ostomy is never really welcomed news. Add on to that, you’re probably very sick and haven’t eaten well in weeks and you’re tired and worried and feel alone. You know nothing about ostomies and are wondering what life will be like with one.

Will having an ostomy bag eventually become second nature and you won’t even really think or worry about it? Yes.

First of all, life is going to be great! You’ll feel better. You’ll eat better. You won’t be bleeding out of unspeakable places and constantly panic-stricken about finding the nearest bathroom. Your life will become more consistent and routine and you’ll end up being happy you had a lifesaving, life-improving surgery.

It’s possible that you don’t believe that right now, though. And while it does turn out to be a good thing for most, there is an adjustment period and a lot of unknowns and myths. For instance, how do I change my ostomy bag? Will I stink? What if I have an accident in public? Can I ever play sports again? Or exercise? Or go swimming?

In short– is it easy? No. Will it be fine? Yes, yes and yes. But for a little expanded information and peace of mind, we can go into a little more detail.

How Do I Change My Ostomy Bag?

You gently peel it off, wipe things off a bit, and put another one on. It really does become as simple as that. But, at first, you’ll hopefully have a specialized ostomy nurse that will teach you how to do it. After your surgery, you likely won’t have to change it yourself the first several times. But, you should practice doing it and will be better off if you make the effort to know how before you leave the hospital. It also helps to know what the standards of care should be for ostomy patients and speak out before you are discharged and sent on your way.

If you did not have access to a certified ostomy nurse in your hospital be sure to seek one out. You can also find a Wound, Ostomy and Continence (WOC) Nurse or an Ostomy Management Specialist (OMS) through product manufacturers and telehealth services.

Will My Ostomy Bag Leak?

At first, Yes. It likely will. You might even get really frustrated in the beginning because you can’t seem to put it on as well as the nurse in the hospital. Even if you put it on “perfectly” and follow all the steps your ostomy pouch can still leak. You’ll get the hang of it, though. Every ostomy and everybody is different. You’ll learn what supplies you need, where to get them, and how to use them to make sure the fit is just right.

While you might be hesitant to leave the house for a while, you’ll soon feel totally confident going anywhere you want, any time you want. And better yet? You won’t be constantly worried about being near a bathroom! There’s always the risk of a leak, though. But it won’t be a big deal. You’ll be able to detect it quickly and take care of it.

Will I Smell?

No. If the appliance is attached correctly, you should never stink. No one will be able to smell you. You can be as close as you want to other people. You can go out and be in a crowded bar and nobody will know you have an ostomy bag. There are also plenty of clothing and garment options to fit well with your pouch and conceal it from anyone ever knowing – if that’s how you choose to approach it.

If you do ever smell, that means you need to check your pouch for any leaks or openings allowing odor to escape. And if you happen to be in public, you can carry tape or any of a variety of things to sneak off into the bathroom and do a quick fix. Will it be uncomfortable or scary the first time it happens? Yes. Will having an ostomy bag eventually become second nature and you won’t even really think or worry about it? Yes.

(Quick note: The answer to a lot of questions about having an ostomy is that “you’ll figure it out” or “you’ll become comfortable” because everything will be new when you first have an ostomy bag. There’s no step-by-step guide. There will be frustrations. Maybe some tears. It’s an adjustment. Nobody just has ostomy surgery, learns to put on a pouch, and then goes about their business. You will have issues. You may have some stained clothes and probably need to change your bedsheets one or two times. But, you will figure it out.)

Can I Do Whatever I Want?

Generally speaking, yes. Of course, this depends on every unique situation, and only you and your doctor can accurately answer this question. But, in general, you’ll be able to do whatever you want. Simply having an ostomy won’t restrict you from doing anything. You might even be able to do a whole lot more than you could before.

You’ll be able to go swimming, play rugby, do mixed martial arts, teach yoga, travel the world, go on dates, and do anything you were physically capable of before having surgery. All without worrying about being in constant pain or eating the wrong thing or needing to run to the bathroom every five minutes. However, make sure to wait 6-8 weeks or until your doctor approves you for any strenuous physical activity before winning the local 5k again. (Perhaps you’ll even want to take part in UOAA’s own Ostomy 5k.)

Getting An Ostomy Is Totally Worth It

All the details about how to change your ostomy pouch where to get supplies, and when you can go back to doing the things you love will get worked out. But the important thing to remember is that having ostomy surgery is going to be totally worth it. Even if your head is spinning now about what life will be like, it will calm down.

And also remember that you’re not alone. One of the best ways to prepare is to call or visit an ostomy support and information group before you have surgery. Many others have been through the same process and are more than eager to offer a listening ear and emotional support. UOAA also offers a new ostomy patient guide and has tons of online resources to get you started on the right path.

You’ll get the hang of everything, then look back and be so grateful that you are a warrior. Countless other ostomates will tell you the same thing. That is, when they’re not busy living an incredible life they wouldn’t have otherwise.

You got this!

 

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

Do I Have a Parastomal Hernia?

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By Robin Glover

No need to be alarmed, but if you have an ostomy you already have a hernia! When the surgeon opened your abdominal muscles to pull your intestine through, they technically gave you a hernia. But we’re not talking about that kind of hernia. We’re talking about parastomal (peristomal) hernias. That’s when more intestine than planned pushes through your muscles and causes a bulge at your ostomy site.

You can tell if you might have a parastomal hernia by a noticeable bulge or by placing your hand over your stoma and seeing if it protrudes out when you cough. (This doesn’t count as an official diagnosis. You’ll probably also want to talk to your doctor.)

What Is a Parastomal Hernia?

A parastomal hernia is like any other hernia. They happen when an organ pushes through a weak spot in the muscle. For people with an ostomy, the organ is your intestine and the weak spot is in the same area the surgeon created your stoma.

While every effort is made to close everything and ensure a tight, snug fit, some extra intestine can force its way through and push against your skin. (This is as opposed to a prolapsed stoma when extra intestine is actually coming out of your body.)

Parastomal hernias usually happen within the first one to two years after ostomy surgery, but can occur later. While people without a parastomal hernia will tell you they’re mostly asymptomatic, those with one will likely beg to differ. Parastomal hernias can cause discomfort and pain and make it difficult to keep your appliance on.

Dealing With a Parastomal Hernia

One of the most frustrating things about having a parastomal hernia is dealing with leaks. Every parastomal hernia is unique and they come in all shapes and sizes so finding the right pouching system is important. It can take some experimenting and ordering plenty of free samples from ostomy supply companies to get it figured out.

If possible, you should also consult with a Wound Ostomy Care nurse. In fact, you should probably do this first. It can save you plenty of time and frustration. Check out this link for resources on finding one. Ostomy nurses are out there and ready to help!

Preventing a Parastomal Hernia

The best way to prevent a parastomal hernia is to listen to your doctor. When they say to not lift anything over 10 pounds for 4-6 weeks after surgery, don’t do it! You should also always be careful about what you lift and use proper form no matter how long ago your surgery was. It’s also a good idea to wear an ostomy support belt or undergarment when you’re working out or doing any strenuous activity, and to apply pressure to your stoma when you cough or sneeze.

Strengthening the area around your stoma site can help, too. But, as always, check with your doctor before beginning any sort of exercise routine. (Also, as always again, quitting smoking and/or maintaining a healthy weight can make a big difference.)

How Do You Fix a Parastomal Hernia?

Well, there’s no simple answer. Like every parastomal hernia is different, so are our bodies and the surgeries we’ve had. It will take consulting with your doctor or a WOC nurse to find a plan of action that’s specific to your needs.

But something you can do right now is find support from the ostomy community. We are a tight-knit group (and just not our sutures!) of people always eager to help and offer a listening ear.

 

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

Sixty Years with an Ostomy

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By Ed Pfueller, UOAA Communications Manager

Beverly Dabliz is ready to celebrate a monumental 60th anniversary but even her closest friends do not all know what it is for. Recently she decided it was finally time to share the news. “Just last week I told a close friend I’ve known for 66 years – I’m the godmother of her twins, but even they did not know I have an ostomy. It was just not something people talked about,” Dabliz says. She adds “People are surprised to learn the news, but it does not matter to them one bit.”

Dabliz had ileostomy surgery in 1962 at Ferguson Hospital in Grand Rapids, Michigan. Ferguson was one of the first clinics in the world to perform such surgeries. By the time she turned twenty she was suffering from ulcerative colitis and by twenty-four ran out of treatment options. “After sixty years I have never regretted it, it has allowed me to live a great life,” Dabliz says.

Almost no one with the exception of her doctor understood the procedure and how to care for it. She knew she was on her own on how to carry on and reach her full potential.
Even if you have a great support network Dabliz recommends, “You have to own it and take care of it.” Ostomy supplies of that time bear little resemblance to the lightweight, contoured appliances of today. “I wore a heavy two-piece rubber appliance held on with an ostomy glue,” she recalls. It was not until the 70s that pouching systems began to evolve into something similar to the one and two-piece systems commonly used today.

“It was just not something people talked about,”

Over the years Dabliz has helped other ostomates in need through the Detroit Metro Ostomy Support Group. While doing hospital visits she would always appear in fitted clothes and enjoyed how grateful the patients were to hear from someone else living with an ostomy. She is happy about the recent return of in-person support group meetings. At meetings, Dabliz is sometimes surprised by some of the concerns new ostomates have regarding things like food, “I just tell them to be sure you chew your food very well, in the beginning, I tried it all without being scared but I’m still often the last one eating. I chew my food so well I’ve worn down teeth.”

Beverly Dabliz, right, works during a mission trip to Costa Rica with her Michigan church group.

Dabliz worked in the accounting department of a computer company in Detroit and Plymouth, Michigan for 45 years before retiring. Her boss was aware of her ostomy and supportive. “I never missed a day of work because of the ostomy,” she says.

Six years ago Dabliz had a fight with kidney cancer and three years ago a shoulder replacement surgery. But she has otherwise been fortunate to live a healthy life since the ostomy surgery six decades ago. She still makes it a point to get out of the house almost every day. “I have always been very active and really have not had any ostomy issues,” Dabliz says. In her eighties now, she still enjoys golfing and was in a bowling league for many years.

Beverly Dabliz working as a volunteer at the Eagle River Methodist Camp in Juneau, Alaska.

Dabliz can also still be found tending to her yard and is reluctant to give up shoveling the Michigan snow – though neighbors have started beating her to it. With the exception of some subtle changes, her ostomy regiment remains routine. She consistently uses the same products.

Dabliz is an active member of her church and has gone on many mission trips over the years in countries such as Jamaica and Costa Rica. “I’ve had to use outhouses in Alaska and done mission work after Hurricane Katrina,” Dabliz says. Even in these tight living quarters, nobody knew she had an ostomy.

An ostomy has never gotten in the way of her passion for traveling and cruising the world with her older sister. The pair have even circumnavigated Australia and New Zealand. Her advice; “I take extra supplies and always bring some on carry-on and have never had any trouble flying. Just do it. Go swimming, do whatever you want to do,” she says.

In celebration of her 60th Stomaversary and 85th Birthday, Dabliz is hoping to take a Holland America cruise around Iceland with her sister. Her minister and family have known of her ostomy but she hopes to tell more friends about what this landmark occasion means to her. Dabliz is confident they will take the news in stride as they help her celebrate a life that could have been cut way too short if not for that long ago ostomy surgery.

A Quick Guide to Urostomy Basics

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Have questions about a urostomy? Worried that getting one will change your life dramatically? Terrified of the idea of one and wondering what people will think?

By Robin Glover

Don’t worry. These are normal feelings. Nobody likes the idea of getting a urostomy – at first. However, if you talk to people who’ve had one a while, they’ll tell you how much it’s improved their lives, and likely saved it.

So feeling a little apprehensive (or a lot) is completely expected. But getting a urostomy should not hold you back from living the life you’ve always wanted. Will it change your life? Yes, but likely for the better compared to past bladder issues.

What Is A Urostomy?

A urostomy allows urine to leave the body without the need of a bladder. Also known as an ileal conduit, it is a surgically-created pathway that channels urine through the intestine to an opening on the abdomen. This opening, known as a stoma, is covered by an external pouching system that collects the liquid.

Why Do People Need A Urostomy?

People need a urostomy because their bladder has either been removed or doesn’t function properly. This is most often due to bladder cancer, but can also be the result of an injury or disease. In other cases, people are born with a non-functioning bladder and benefit from a urostomy their entire lives.

Is A Urostomy Gross?

No. Not at all. They do not cause an odor, and most people won’t even know if someone has one. Getting a urostomy is often a life-saving procedure that allows people to resume their everyday lives. Most people find it much easier and more sanitary to have a urostomy than deal with an incontinent bladder.

Will A Urostomy Affect My Daily Life?

There will be some adjustments after surgery, but most people who get a urostomy can usually do more things than they could before. You won’t need to worry about the embarrassment of having an accident in public or always needing to know where the nearest bathroom is. But most of all, you’ll be able to live a longer and healthier life.

Is A Urostomy The Same As A Colostomy?

While they share similar mechanisms in how they function, a urostomy helps people with bladder incontinence. A colostomy helps people with stool incontinence. Both use a pouching system to collect what comes out, and both are sanitary and safe without any odor when closed.  Urostomy pouches have a tap or valve to allow the urine to be drained quickly and easily. Overnight options are available for nighttime drainage convenience.

How Many People Have A Urostomy?

You are not alone. An estimated 725,000 to one million people in the United States have an ostomy or continent diversion. Colostomy and ileostomy surgery are the most common ostomy types but many thousands of people of all ages and backgrounds have a urostomy or urinary diversion. For a bit of inspiration read a few of their patient stories on our blog.

How Will A Urostomy Change My Diet?

You can eat whatever you want when you have a urostomy. Of course, this is barring specific restrictions from your doctor or other dietary limitations unrelated to having a urostomy. But, in general, there are no restrictions to what you can eat with a urostomy but information on the importance of hydration and other good health practices are covered in our ostomy nutrition guide.

What Is A Continent Urostomy?

A continent urostomy involves a surgically formed internal reservoir that allows control of when urine is released from the body. It usually involves a catheter that’s inserted into the stoma. Continent urostomies can also be routed through the urethra so urine is released from the body in a more typical fashion. Check out our Continent Urostomy Guide for more information.

Does A Urostomy Decrease Life Expectancy?

The answer is no. Urostomy surgery is a way to help people live longer and more fulfilled lives. So if you’ve been told you need a urostomy, as much as you might not think so right now, you’ll probably be glad you had it.

 

These are probably just a few questions you have about a urostomy. Luckily, there are people all over the world happy to help you. First of all, your Wound, Ostomy, and Continence (WOC) nurse is there to teach and help you. But practical advice and emotional support are always just a click away in online communities and by finding a UOAA Affiliated Support Group near you. Just remember that only your doctor and WOC nurse know the unique circumstances of your condition.

For more information on urostomies, please visit our Urostomy Facts Page.

 

 

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