Conference Couple

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Ileostomates Andy and Sandee began their life adventures at a national ostomy conference 19 years ago.

By Ed Pfueller, UOAA Communications & Outreach Manager

When Andy Kyriacou stood up to ask a question of a panelist at the 2004 United Ostomy Association (UOA) Conference in Kentucky, he got more then just a good answer. He inadvertently found a new life partner.

The session was about dating and designed for single ostomates. Sandee Prechtel was on the panel and brought the perspective of dating again after losing her husband of 39 years. Andy, who became a widow losing his longtime wife the previous year, asked about her experience dating again after, now with an ostomy.

Andy and Sandee at the 2019 UOAA National Conference in Philadelphia. The couple met at a conference in 2004 and have not missed a conference since.

“Well, you kiss a lot of frogs before you find a prince,” Sandee recalls saying. They remember it being a great panel discussion that encouraged the audience to be confident in themselves.

During the rest of the conference, the pair would run into each here and there and chat briefly before sessions. “She was very easy to talk to,” Andy remembers.

As is tradition at UOA and now UOAA conferences, the closing night party ended with dancing. Andy asked Sandee to dance, and a small spark kindled. They danced the last dance of the evening.

“I did not want the evening to end so asked her to go for a walk along the Ohio River,” Andy remembers. “We walked and talked from around midnight to 1-2 am.”

They talked about life goals, former spouses, aspirations, and soon realized they had much in common. “We found out we both had two adult children and were in longtime marriages,” Sandee says.

“Well, you kiss a lot of frogs before you find a prince”

Andy was living in Connecticut and Sandee in Arizona so they exchanged emails and made tentative plans to attend the next conference the following year. Once they started emailing and talking on the phone, however, it became clear they’d want to see each other before the next conference.

“Sandee invited me to Tucson for New Years Eve, 2005 and I figured it would be either the longest or shortest few days, depending on how it went,” Andy remembers. Andy had a chance to meet her kids and it became clear their relationship would be more then just a friendship. “We planned future rendezvouses right after that,” Andy says.  The long-distance relationship was a fit for their mutual love of travel and in the next few years they met up in New Orleans, Virginia, Cleveland, Hartford and of course at the next UOA conference in 2005 in Anaheim.

When UOA annual conferences morphed into UOAA biennial conferences, they kept on attending to see each other and the many friends they have made over the years.

“It really is a life changing experience you can’t find anywhere else to be among that many ostomates and their partners. You have no idea who has an ostomy and who does not,” Sandee says. “There is always something new to learn, we look forward to going to explore all the new cities and locations.”

Both are also active volunteers in their local ostomy support groups in Hartford and Tucson. Andy served as Vice President in his group, Sandee was President of her group. At the 2017 National Conference in Irvine, Sandee was awarded the Affiliated Support Group Leadership Award by UOAA for her exemplary service to her local ostomy community.

“I did not want the evening to end so asked her to go for a walk along the Ohio River”

She is particularly proud of the informal and well attended new ostomate monthly meeting her group has been hosting for many years. “The tips they receive are really important in their recovery,” Sandee says. If a new ostomate has questions or concerns about dating and relationships the couple is happy to share their personal story.

Sandee has since stepped back from an ASG leadership role but Andy is quick to point out, “She is the glue that holds everything together.” When Andy retired in 2007 the couple began to split their time between Connecticut and Arizona.

In 2012 knowing that Sandee loves heart shaped rings, they picked out a diamond ring and Andy got down one knee.  Though not married on paper, they are committed life partners. They continue to always be up for new adventures.

“We’ve never been to Houston, we’re really looking forward to it!” They both say about UOAA’s 8th National Conference this August. “And As long as we are physically able to, we plan to keep going to each one.”

It will be 19 years since that fateful connection in Kentucky. We’ll save the last dance for them again this year in Houston and ask Sandee if she thinks she has found that prince.

Lee-Ann Watanabe–Living with an Ostomy

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My ulcerative colitis, IBD and ileostomy journeys have been a long road for sure! I spent most of my 30s trying every single pill, steroid, infusion, shot, diet, and remedy you could possibly fathom, all without relief. When the Mayo Clinic in Rochester, MN suggested that I undergo ileostomy surgery, I knew I was ready. After a decade of suffering, I was reborn on December 7th, 2015, following a permanent and total proctocolectomy with ileostomy.

My advice for others diagnosed with IBD and/or contemplating ostomy surgery, would be for them to ask ALL the questions; especially of your medical team. I was young and naive when first diagnosed with ulcerative colitis. Upon initial diagnosis, I didn’t think it was that serious. I didn’t believe I was sick, and all I wanted to do was get well and get back to racing triathlon. I took any and every medication doctors gave me, and I never questioned any of it. I never asked for a different way. I never thought that 10 years later, all the medications would stop working or not work at all. If I could do it over, I would find a doctor who was highly experienced with IBD patients.

If I could let people know something about IBD, it would be that I am a living, breathing example of invisible illness. I never looked sick. Even when sick, I continued my competitive triathlon racing. Don’t judge a book by its cover. My sport was my outlet; something I could control while my body continually failed me. Everything happens in your mind. With a positive outlook and a great attitude, everything is possible!

For many years, sick was my new normal. I was not living life; I was just surviving life with UC. Now, as an ostomate, I can say with 100% certainty that I am free. When I made the decision to have surgery, I decided I would advocate to show the world what people living with an ostomy can do. And you know what? There isn’t anything someone living with an ostomy CAN’T do!

Read more: https://meplus.convatec.com/articles/meet-lee-ann-watanabe/

 

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

 

‘UOAA Has Been A Lifesaver for Me’ Says New Ostomate

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When first presented with having a “bag” I was terrified. I had a lot of questions…. How will I wear my clothes? Will I still be able to run or lift weights? Will I ever date again? How can I go to the beach? And so many more. I really was not familiar with this at all.

How UOAA Helps: Connie contacted UOAA before surgery earlier this year and is now on the path to health and happiness in life with an ostomy. Donate to help the next ostomate in need.

I did my fair share of googling, but there are so many conflicting pieces of information out there. I also joined some Facebook groups to find some support.  That proved to be very confusing and often quite discouraging. In February of 2023, a week before my surgery, I met with an ostomy nurse for the first time.  That is when it hit me.  She showed me a practice stoma, put my markings on, and had me look in a mirror with a bag.  I realized I needed more information in order to navigate this the best I can.

Finding UOAA

I came home and searched for ostomy support groups in my area and found one. I immediately connected with them, and they shared UOAA’s information with me. I then went on to their website ostomy.org to gain as much knowledge as possible. I went into surgery with a positive attitude because I knew my life would be so much better afterward.

The people I talked to at UOAA’s office were so helpful! They answered all my questions, and I had a lot!  They directed me to many resources like a New Patient Guide and sent me links to videos and other information which I still use. It is reassuring to know that I can reach out with questions and that they will be there for support.

UOAA has been a lifesaver for me. I was overwhelmed following my ostomy surgery. I am so excited that I am feeling better. I am so appreciative of the connections I have been able to make and the educational materials I have received by contacting UOAA.

On February 23, 2023, I had surgery for an end ileostomy, total colectomy, rectopexy, and hernia and bladder repair. After a lifetime of being a prisoner to my colon and GI tract, a ton of medications, and a ridiculous daily twelve-hour ritual that dictated my days, I finally was given hope to improve my quality of life. The day after surgery I already knew this was the right thing for me, and I somehow felt “free” of all the meds and issues I had before.

Helpful Free Resources

UOAA sent me a welcome packet in the mail with a ton of info about nutrition, living with an ostomy, exercise materials, you name it. The coolest thing was the card to use with TSA when I fly… that is going to be a lifesaver, I think! I had many questions about getting back to my normal activities, and I was sent links to Youtube and even Instagram of people that have ostomies and have resumed, or even surpassed, their pre-ostomy fitness routines.

My experience has definitely been better with my local ostomy group and with UOAA by my side.

A link to an occupational therapist was also helpful. I started following and connecting with many of these people, as I have found inspiration in them. I have since called UOAA several more times seeking answers to my questions, concerns, or even worries. Each time they have promptly responded and provided me with continued optimism as I begin this ostomy journey.

UOAA Helped Me Feel ‘Normal’ Again

I think that the biggest thing is that UOAA helped me to feel “normal” and that I am not alone in this.  Starting out with an ostomy is pretty scary, and there are a lot of unknowns. So much of what you read is negative from people that have had problems or are just very discouraged with their situations. UOAA shares the successes, the positives, and the education so that you can learn and grow each day knowing that you don’t have to give up anything at all.

For me, I plan to get back to my full fitness routine once I am fully recovered. I already feel healthier than I have for so many years.  But I know I still have a lot of learning to do… from appliances (I still can’t figure out the best ones for me), to the different types of foods to eat, to stoma care (I still always want to make sure everything is okay), to traveling, exercise, clothing, wraps, connecting with other people with ostomies, and maybe even dating again in my future. My experience has definitely been better with my local ostomy group and with UOAA by my side.

Grateful to Learn More at the National Conference this Summer

I’m also very thankful to have been awarded a CARES scholarship (FYI, current scholarships have been filled) to attend UOAA’s National Conference in Houston. This assistance will allow me to continue on my journey in a healthy and positive way.

As a single 57-year-old mom, I have three grown children (one still in graduate school), a new granddaughter, and two younger children I adopted, one with unique medical needs – it has not been easy. Last year’s hurricane, coupled with the astronomical surgery costs, have me struggling greatly on a teacher’s salary. I have worked really hard to provide for other people, and I’ve never really done for me.

This conference is something I feel is important for me as I want to be able to live my life to the fullest. I strive to be the best Nana, mom, and person I can be. I want to embrace my body, my life with an ostomy, and continually improve my quality of life.. It will allow me to move forward, make connections, gain much-needed knowledge, be an advocate for myself and others, and to stay “OSTOMISTIC!” 

One day I can even envision myself advocating for others in the ostomy world, being active in the ostomy community, and I would love to get to the point where I can even be an inspiration to others.

Connie, you are already inspiring to those of us at UOAA.

Please Donate to UOAA to put other people like Connie on a successful path.  Support quality of life resources, education and advocacy for people living with an ostomy or continent diversion. United Ostomy Associations of America inc. (UOAA) is a 501(c)(3) nonprofit organization and all donations are tax deductible. Thank you!

Shared by Connie Pollina of Naples, Florida

Life as a Double Ostomate

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

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

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

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

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

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

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

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

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

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

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

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

“DIFFERENT TO MAKE A DIFFERENCE“

 

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

Destined to Love, Ostomates by Chance

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By Ed Pfueller, UOAA Communications Manager

Taylor Mitchell and Michael Ross

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

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

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

Friends from the Start

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

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

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

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

What is an Ostomy?

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

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

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

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

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

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

In Sickness and in Health

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

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

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

A Couple of Ostomates

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

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

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

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

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

Finding Community and Support

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

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

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

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

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

 

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

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

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

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

 

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

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Written by Danielle Gulden and Joe Teeters

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Jessica’s Ostomy Story: Making an Invisible Illness Visible

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Words and Photos by Jessica Miles

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

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

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

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

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

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

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

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

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

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

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

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

Celebrate and Support Ostomy Resilience

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By Robin Glover

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

Ostomies Are Life-Savers

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

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

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

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

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

In Person Events Are Back This Year!

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

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

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

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

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

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

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

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

Vancouver, WA

Nashville, TN

Boise, ID

Birmingham, AL (October 8th)

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

 “I Intend to Be Victorious”

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

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

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

Share Your Story Too

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

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

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

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

Help Support UOAA

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

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

 

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

Bethany’s Story: An Architect Learns to Engineer Life with Short Bowel Syndrome

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My journey to a Short Bowel Syndrome (SBS) diagnosis followed years of motility issues, intestinal complications and numerous surgeries, including a jejunostomy, which is an ostomy that creates an opening in the part of the small intestine called the jejunum. As a trained architect, I believe there’s no problem too big to solve, and applying that mindset has helped me to navigate the challenges of SBS and life with an ostomy. This is my story.

When I was diagnosed with a motility disorder at the age of 15, I never thought that it would have such an effect in my life. I was able to function with physical activity and limited diet until I had my colon removed in 2015 due to colonic volvulus. In my case, this meant that my colon twisted around itself, causing tissue death from lack of blood flow. The procedure worsened my underlying motility disorder of the small intestine. As a result of my underlying condition of chronic intestinal pseudo obstruction (CIPO), my intestines wouldn’t function. I lost the ability to absorb nutrients through my small intestine. I was in desperate need of answers.

Ultimately, I was evaluated for an intestinal transplant. At the time, my small intestine was severely compromised due to small intestinal bacterial overgrowth. In order to improve my odds of surviving the transplant, I underwent surgery to remove the majority of my small intestine in 2018, leaving me with only four inches of small intestine that didn’t function properly. The surgery, and the resulting serious and chronic malabsorption disorder that accompanied it, resulted in my diagnosis of short bowel syndrome, SBS.

To learn more about SBS, visit https://sbs-whattoknow.com/. To join the community and talk with others who are living with SBS, check out https://www.facebook.com/TakedaSBS/.

Learn More

 

While not everyone will experience an SBS diagnosis the same way, for me, the removal of my colon and most of my small intestine eliminated the ongoing pain and discomfort I experienced when I was living with a motility disorder and chronic intestinal pseudo-obstruction syndrome. Just prior to the surgery to remove my small intestine, I weighed 87 pounds and couldn’t walk half a mile without becoming exhausted. I now weigh 122 pounds and was able to walk nine miles the other day. Keep in mind that this is just my experience and everyone’s journey will be different. In consultation with my medical team, I have decided to put my intestinal transplant on hold.

In my case, living with SBS also means that if I don’t eat the right things, it can affect my electrolytes and fluid balance. Without my colon, I don’t absorb fluids. So, I have found that if I drink water, I can actually lose fluids. A key part of managing my condition has been learning to listen to my own body and trying to understand what’s happening inside. For example, I have learned to recognize the signs of dehydration and have made it a priority to understand my lab values. As I have gained a better understanding of my condition, I also think it’s been important for me to find the right providers for what I’m going through at each stage of the process.

 

Navigating how to live with a jejunostomy was a challenging aspect in my SBS management, especially when I experienced leaking. I remember once going to a rare bookstore and my ostomy bag opened. In those moments, with liquid pouring down my legs, I had never felt more embarrassed. However, my grandma taught me that you have a choice in uncomfortable situations – you can either cry or laugh. I try to choose the latter. Not everyone will experience leaks with an ostomy, but if it happens to you, I’d encourage you to give yourself grace. Adapting to life with an ostomy can be a gradual process. For example, when I first had my jejunostomy, it took me an hour to change my bag and now it only takes me 15 minutes.

Despite the challenges, I never gave up on looking for answers and solutions. My training as an architect has led me to believe there is nothing that can’t be solved. After consulting with multiple ostomy teams and connecting with people who share similar experiences, I started to embrace the changes that came with my SBS diagnosis and jejunostomy.

I have been lucky enough to receive tremendous support throughout my SBS journey. My family is my biggest source of support. My husband has been there for me despite knowing about my chronic condition. My dad is the one who figured out how to empty the additional drainage bag overnight by flipping it upside down. My mother and grandma have created customized recipes to help with my oral food intake. But, for me, it’s been a continual process to educate the people around me about my condition. I have learned to be patient and vocal about my specific needs.

For anyone living with a rare and chronic illness, I encourage you to reach out and seek community support. A few members of the SBS community have inspired me and helped me to better understand my condition and encouraged me to break down barriers in my own SBS journey by sharing their own experiences. I’m grateful for the opportunity to connect with others going through similar experiences.

When I was first diagnosed with SBS, I did not think it would be possible to continue doing the things I love. Along the way, the architect in me has looked for opportunities to “design my future” with SBS by embracing challenges, educating myself and the people around me, and connecting with others in the community. I am proud of the progress I’ve made – I have a job that I love and I live in a city that I love. SBS is only a small piece of who I am, and it does not define who I am. I hope you can embrace YOUR journey with SBS, too.

This article was created by Takeda.

 

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