Tag Archive for: Travel

73 Years with an Ostomy

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Remembering Ruth Fawley

By Ed Pfueller, UOAA Communications and Outreach Manager

In 1950, Ruth Fawley celebrated her 21st birthday, but the following decade was spent mainly in hospitals. Her ulcerative colitis led to an ostomy in 1951 and multiple unsuccessful intestinal surgeries. At one point, she was in a life-threatening coma for a week. Considering her health struggles, few people at the time might have predicted she would live an active life and reach the age of ninety-four before her passing in 2024.

A turning point in Fawley’s life came with her introduction to Dr. Harry Ellicott Bacon, Professor and Chairman of the Department of Proctology at Temple University Hospital in Philadelphia, Pennsylvania. He performed ileostomy revisions and subsequent surgeries that ultimately allowed her to lead a more normal life.

Dr. Bacon was an internationally renowned and innovative surgeon who prioritized the emotional well-being of his patients. He invited Ruth to a peer support group for women with ostomies and related surgeries.

Ruth worked as an executive secretary and while working at the travel magazine Holiday met many well-known authors, likely sparking her lifelong passion for travel.

She married her longtime husband, J. Russell Fawley, Jr., in 1959. When it came to starting a family, doctors at that time were not sure if a woman with an ileostomy could get pregnant and give birth. “She would later joke that out of the nineteen surgeries she endured, the only time she left the hospital with more than she went in with was when she had her two Cesareans,” remembers her daughter Nancy Fawley.

She thinks her mother would want fellow ostomates reading this article, “To be inspired and know you can have a family, travel and have a long normal life with an ostomy.”

Nancy says her mother was a wonderful cook and loved to garden. Ruth loved the water, whether swimming at the Jersey Shore or doing near-daily water aerobics later in life. Ruth also had a keen artistic eye, loved to sew and was well-known for the dynamic use of colors in her quilts.

Like many of her generation, Ruth carried on quietly in life with an ostomy but had to manage the challenges of short bowel from her many surgeries. She was a longtime supporter and member of UOA and UOAA and an avid reader of The Phoenix Magazine.

A June 2011 article on Army Pilot Bob Cuyler’s story of flying in a combat zone with an ostomy inspired her to write a letter to him. He responded in kind by sending her a Presentation Flag his unit took into active duty, which she cherished for years after. In her return letter, she thanks Cuyler for his service and fortitude and shares that even finding ostomy appliances was difficult in those early days. “An ileostomy was not spoken of and I know the humiliation, embarrassment and stigma attached to it,” she shared. But her sense of humor shines through as she ends her letter joking that the old Ostomy Quarterly magazines used to arrive in plain brown paper wrappers, leading her neighbor to think she was getting Playboy Magazine!

“If I get to the gates of heaven and still have this ostomy pouch I’m turning around!”

Nancy says that her mother shared many Phoenix articles with her over the years so she would have a better understanding of her condition. “I relied on this information when I worked with doctors, health care professionals and hospice caregivers who had little to no experience with patients with an ileostomy,” Nancy says.

In honor of her mother’s memory, Nancy has donated to UOAA at The Phoenix Society Diamond level in part because of UOAA’s continued commitment to ostomy education for both patients and medical professionals.

In her later years, Ruth herself became a caretaker for her husband as he battled with Parkinson’s disease and dementia before his death in 2014. During this time, she created a striking quilt with dynamic colors she entitled “meltdown.” Ruth’s colors live on in the many quilts she gifted to family and friends.

In her final months, Nancy got to hear more stories of her mother’s travels in England and France and a doctor’s direction that a bit of scotch can help in digestion. She thinks her mother would want fellow ostomates reading this article, “To be inspired and know you can have a family, travel and have a long normal life with an ostomy.”

At the end of her 94-years she had just about enough of dealing with it though, “If I get to the gates of heaven and still have this ostomy pouch I’m turning around!” she told her daughter. The amazing mix of humor and resilience required after 73 years with an ostomy still shining through.

 

The Phoenix Society recognizes those individuals who are able to sustain and/or increase their total annual donation of $500 or more during each calendar year. Become a member of The Phoenix Society or donate at any level to help UOAA fulfill its mission to promote the quality of life for people with ostomies and continent diversions through information, support, advocacy, and collaboration. UOAA is thankful for those who give, including Nancy Fawley and the other Diamond and Ruby Level members listed below. 

 

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.

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.

Traveling With Your Service Animal

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There are many things to think about when preparing for a trip. Whether traveling a few hours from home, or to another country, for a dream vacation, or for business, the more prepared you are, the more at ease you will feel. Luckily, there are resources available to assist you in planning for all sorts of travel destinations. Coloplast® Care offers comprehensive support for all areas of life, including tips on packing and planning for your trip. Making sure you have extra supplies, and the right contacts for any additional supplies you might need in case of an emergency at your destination will keep your mind calm and clear and allow for you to spend time enjoying your trip instead of worrying about the ‘what-ifs’ often associated with having an ostomy.

Traveling with your service animal can require a little extra preparation. If you are flying to your destination, be sure to save yourself time and hassle by calling the airline to understand their unique regulations and specifications, and to give them any additional information they may need about your unique situation. Here is a helpful checklist to ensure you have all the documentation you might need:

  • Certificate of your service animal
  • Current health records (including up to date vaccinations)
  • A note from your healthcare professional
  • A note from your veterinary clinic
  • A personal travel certificate which explains your condition, the medical supplies you are carrying and why you might need support and privacy as you go through security

Note that it can be extra helpful to have these documents already translated into the language of the country you will be visiting.

Depending on your destination, you might also want to look into other requirements, for example, if you are flying to an island such as Hawaii, there may be a quarantine period for your animal. If your travel plans are taking you to a country in Europe, making sure you have an ISO microchip is important as not all microchips can be read in different countries.

Leading up to the hours before your trip, you may want to limit food and water if your animal will be on a train or plane for several hours. Be sure to carry water for them to have as soon as you land. If your travels are by car, plan a route with easy places to stop to allow your animal to relieve themselves and get some exercise.

In the Airport

Arrive earlier than normal to the airport to ensure you have plenty of time to go through security and find your gate. Make sure the security personnel are aware that your animal is a service animal, this should help to speed up your security check and move you through faster. You should not have to be separated from your service animal at any time, it is your right and privilege to have them accompany you at all times.

Most airlines require a 48-hour advance notice of service animals on flights, be sure to contact your airline to make them aware that you will be traveling with your service animal, and ask any questions you might have about the day of travel.

Hotel Stays

Similar to your airline travel, you may want to contact your hotel before your stay. Let them know you will be traveling with your service animal and ask them to inform their staff. As a service animal is not a pet, they cannot be refused in any public space. As well, a hotel cannot charge a fee for having a service animal stay in a room unless they cause damage. Be sure to clean up after your dog as you would at home, and never leave your service animal in the hotel room alone. Even the best-trained ones can become anxious or stressed if left unattended in a new atmosphere.

Lastly, once you reach your destination, should you have any questions or need any medical supplies or advice, Coloplast has put together a downloadable list of all of their local offices around the world.  The more prepared you are before you travel, the more you will enjoy the trip and be at ease. Happy Travels!

For more information, visit www.coloplast.us.

 

Editor’s note: This educational 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.

On the Go Travel Tips

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Enjoy a trouble-free transit with these travel tips.

If you’re traveling by airplane, car, bus, train, or cruise ship, you might be stressed about your ostomy needs during the trip. Don’t worry. With a little preparation, everything can go smoothly.

It’s also a good idea to start with short trips away from home to build up your confidence. Once you’re reassured that your pouching system stays secure during normal day-to-day activities, you can start to venture farther.

Here are a few tips to help you be fully prepared and comfortable, no matter how you travel.

Luggage weight limits: Are you traveling by air with a lot of supplies? Check with your airline and your country’s federal travel agency (e.g., the Transportation Security Administration in the United States) for the luggage weight limit. Weigh the luggage before you go. It may be helpful to use a portable luggage scale. If you’re over the limit, check to see if your airline has a special allowance for medical supplies.

Forbidden items: The International Air Transport Association (IATA) forbids dangerous items on board airplanes. For example, ether, methylated spirits, or flammable aerosol adhesives and removers are considered fire hazards. Scissors also may not be allowed in carry-on luggage – check with your airline or pre-cut all of your skin barriers before traveling.

Pre-boarding security checks: At airports, your carry-on luggage will be inspected at the security baggage check before boarding. If you have medications, get a card from your healthcare professional that explains why you need them. Some countries do not allow certain medications, such as codeine, to cross their borders. A travel communications card from an ostomy association in your country may also be available. United Ostomy Associations of America (UOAA) offers a travel card to help you be ready for searches or checkpoint questions.

Using airplane toilets: During a long flight, there can be long lines for toilets, especially after meals. Be alert for a chance to use the toilet when most people are in their seats. It’s also a good idea to request a seat near a toilet.

Car travel: Your car seat belt should sit across your hip bone and pelvis, not your abdomen and stoma. If you want to give your stoma extra protection from the strap, you can buy a seat belt pad. You can also use an extension bracket to lower the angle of the belt across your body.

Cruising with a stoma: Are you worried about taking a river, lake, or ocean cruise? Don’t be. If you’ll be away from land for a few days or more, just pack double the supplies you need. Plus, follow these simple precautions and you’ll have a trouble-free voyage.

View or print the full PDF booklet Living with an Ostomy: Travel from Hollister.com.

For similar articles on traveling with an ostomy and other topics, visit the Hollister Ostomy Care Learning Center.

Editor’s note: This educational article is from one of our digital sponsors, Hollister Incorporated. 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.

No Stress Air Travel with an Ostomy

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Traveling through airports can make anybody nervous as security lines get longer and wait times increase. For some people living with an ostomy, air travel can cause further anxiety.

Universal pat-downs performed by Transportation Security Administration (TSA) agents and uncertainty surrounding procedures at the screening checkpoint can add to an already stressful experience.

Luckily, United Ostomy Associations of America (UOAA) is working on your behalf to help make your next airport security screening run as smoothly as possible. But you need to be prepared beyond just packing the right supplies and emptying your pouch before a flight. With our tips and latest guidance from the TSA, you’ll be empowered with the knowledge to help make your next travel experience a positive one.

“We have been working with the TSA for over three years now and have established an excellent working relationship,” says George Salamy UOAA’s TSA Liaison and representative on the Coalition. In fact, at a past TSA Disability and Multicultural Conference, OAA was the recipient of a Community Participation Award.  “Recognition by the TSA with this award illustrates how we are helping our constituents, the ostomates, who want to travel with little inconvenience,” George says.

One way we do this is by participating in conference calls where we provide input from the UOAA traveler perspective. The system is a work-in-progress and complaints about invasive searches outside of protocol, though rare, still occur.

Communication is critical in navigating the security process. Inform the TSA officer that you have an ostomy pouch before the screening process begins. For discretion, you may provide the officer with the TSA notification card or a medical document describing an ostomy. Expect to be screened without having to empty or expose the ostomy through the advanced imaging technology, metal detector, or a pat-down. If your ostomy pouch is subject to the additional screening you’ll be asked to conduct a self pat-down of the ostomy pouch outside of your clothing, followed by a test of your hands for any trace of explosives.

You may also undergo a standard pat-down of areas that will not include the ostomy pouch. Remember it is normal protocol for agents to request a pat-down of any travelers. Be aware however that at any point during the process you can ask for a Supervisory TSA Officer, and a private area for the screening as well as be accompanied by your travel companion.

As an ostomy traveler, if an incident occurs that differentiates from the protocol (such as being asked to undress the area around your ostomy) know that this is not allowed. It is important to report this to the TSA and follow-up with UOAA to ensure appropriate and immediate action is taken. Upon review of security footage corrective action may be taken in the form of additional training and/or discussions with appropriate personnel at the airport to help prevent similar incidents from happening again.

Before your next trip view our tips for ostomy travelers. We will continue to educate and communicate with the TSA with the goal of making travel easier for all those traveling with an ostomy. No people living with an ostomy should ever be discouraged from travel whether for work, to see family and friends, a vacation or a journey around the world.