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

Hear Our Roar

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By UOAA Advocacy Manager Jeanine Gleba

When thinking of UOAA I am often reminded of William Shakespeare’s quote from A Midsummer Night’s Dream: “Though she be but little she is fierce.” United Ostomy Associations of America (UOAA) is a small national non-profit organization run by a dedicated volunteer Board of Directors with limited funding and a majority part-time 7-person staff. However, we are proud to be the leading organization advocating for the ostomy and continent diversion patient communities in the United States! We use several strategies to ensure our voices are heard including but not limited to:

1. We have a growing (2000) Advocacy Network of grassroots advocates who take time out of their busy schedules to take action when called upon to do so. They help us amplify our message! Please join our Advocacy Network. It’s a simple way to wet your feet in the advocacy world and doesn’t require a major time commitment.

2. We know we are stronger in numbers. UOAA is a member of several coalitions including the Access and Care Coalition, Digestive Disease National Coalition (DDNC) and the Safe Step Act Coalition where we share common goals and work together to achieve them. For example, the DDNC’s mission is to work cooperatively to improve access to and the quality of digestive disease health care in order to promote the best possible medical outcome and quality of life for current and future patients. Although UOAA is unable to have its own “ostomy” lobby days or fly-ins on the Hill (due to financial limitations), we are an important part of the annual DDNC Spring Public Policy forum. Ostomy advocates join forces with other digestive disease advocates to meet with Congressional staffers to share their stories and ask for support of our federal legislative priorities. These coalitions submit joint letters of requests or support/opposition to Congressional leaders and key regulatory decision-makers. An example of power and strength in numbers is the Safe Step Act Coalition which now comprises 215 patient organizations all advocating for passage of this important piece of legislation!

3. As a national organization we also develop position papers on topics concerning people living with an ostomy or continent diversion. These important documents might give background information, description of the impact on our community, and in some cases, advocate for change. We use them when talking to key decision-makers such as your elected officials, the media, or anyone who wants to know more about where UOAA stands on the topic/issue. An example of one of our position statements is our opposing stance on the cost-shifting tactic called “non-medical switching” of ostomy prosthetic supplies. Oftentimes, these papers include patient testimonials from the ostomy community to strengthen our message. You’re invited to share your story with UOAA and give permission for potential use in an advocacy effort.

4. We build relationships with like-minded organizations and collaborate on efforts that will benefit our collective groups. For example we frequently partner with both the Wound Ostomy Continence Nurses Society and Certification Board.

5. UOAA has a unique patient perspective and first-hand knowledge of the patient access issues facing the ostomy population. We are the trusted go-to source for ostomy information. We are compelled to take initiative and reach out to government agencies and Congressional Committees to share our views and extend the invitation to use us as a resource if they have any questions or if we can help in any way to move things forward. For example, in April 2023 we requested and attended a Patient Listening session with the FDA Center for Devices and Radiological Health (CDRH) Patient Engagement team to educate the FDA about the needs and challenges of this particular historically underserved patient population. We believe the FDA needs to understand what is important to the ostomy community when ostomy medical products are being developed and approved.

6. With regards to our federal priorities, 2023 was the start of the 118th congressional session. UOAA supports several bills related to the ostomy and continent diversion patient communities’ underlying medical conditions such as colon cancer or inflammatory bowel disease. Using the weight of our entire organization, we contact politicians via letters and in-person meetings to garner co-sponsors and “yes” votes. Some of the bills we are currently advocating for will significantly improve patient access to needed treatments:

· S 652/HR 2630, the Safe Step Act, would ensure that employer plans/PBMs (Pharmacy Benefit Managers) offer an expedient and medically reasonable step therapy exceptions process. This will empower individuals to navigate their insurance and help them access the treatments they need in time. Read the flyer and see the 215 orgs that support the bill.

· S 1375/HR 830, the HELP Copays Act, would ensure that copay assistance is counted towards a beneficiary’s deductible and out of pocket maximum. This will help patients afford their treatments. Read more.

For more information on our national efforts check out the 2023 UOAA Federal Advocacy Priorities Handout.

We all have the choice to do nothing or take action. I hope you choose UOAA and take action with us so we roar even louder!

Understanding Stoma and Ostomy Basics

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There are two main types of stomas, and they both have certain “ideal” characteristics in common. Do you know what they are?

Wound care nurses know that it’s not uncommon to hear the terms ostomy and stoma used interchangeably, even though they have different meanings.

What is a stoma?

Let’s start with the basics:

  • The stoma is the mouth-like, visible part of an ostomy.
  • A fecal or urinary stoma is composed of mucous membrane or the lining of the intestine that’s exposed to the surface.
  • Following ostomy surgery, effluent (output) — such as fecal matter, urine, or mucous — will pass through the opening of the stoma, called the lumen.
  • The patient will not have voluntary control of the effluent expelled by the stoma.

Types of stomas

There two major categories of stomas: the end and the loop.

End stoma

An end stoma is created when the surgeon brings one end of the GI tract through the abdominal wall, then folds it over. The surgeon then removes the other end or sews it shut.

In some cases, the surgeon will create end stomas from both ends of the GI tract, called a double-barrel stoma. In this case, you’ll see two distinct stomas: the proximal stoma discharges stool and the distal stoma discharges mucous. Sometimes an expanse of skin separates the two stomas, and sometimes they will share the same opening. This construction is most common for infants or very small children.

Loop stoma

To create this type of colostomy, the surgeon lifts a loop of the transverse colon through the abdomen. The colon is given a small split on the side facing out, and a rod is placed underneath for support. The rod may be removed after a few days when support is no longer needed. The proximal opening of the stoma drains stool from the intestine, while the distal opening of the stoma drains mucus. Loop stomas are usually created for temporary ostomies.

Characteristics of an ideal healthy stoma

Each stoma is unique, just as each patient’s physiology is unique. Different surgical techniques will result in stomas of different appearance. At the same time, the “ideal” stoma has some identifiable characteristics:

Moist

The inner surface of the stoma continually produces mucus to cleanse the stoma. Mucus production is a normal function of the intestines that serves as natural lubrication for food passing through the body. The mucus gives the healthy stoma a wet appearance.

Beefy red

Blood flow is essential to the health of the stoma. Normal stoma tissue is highly vascular and will appear deep pink to red. Pale pink is also normal in a urinary stoma. Stoma tissue may even bleed slightly when rubbed or irritated, which is normal. When a stoma turns pale, or dark, it means there’s a problem with the blood supply, so be sure to investigate.

Round

A round stoma is easiest to measure with circular rulers. It also works best with pre-cut skin barriers (the part of the ostomy appliance that affixes to the skin and attaches to pouch). An oval or irregularly shaped stoma may require cut-to-fit skin barriers.

The shape is affected by the type of ostomy and the individual’s body composition. The shape can also vary with the wave-like muscular contractions of the intestines, the peristaltic movement.

Budded/protruding

When a stoma has a rosebud shape (rather than flat or retracted), it protrudes into the pouching system. This allows the effluent to fall out into the pouch away from the body. The ideal protrusion is 2-3 cm with a lumen in the very center.

Strategically located

To easily accommodate the skin barrier, it’s ideal to have 2-3 inches of flat skin around the stoma. Avoid beltlines, bony prominences, skin folds, suture lines, or the umbilicus (belly button). Also, the patient will have more success managing a stoma located in an area that they can see and reach.

Stoma assessment

The stoma itself has no sensory nerve endings, which means there is no sensation for the patient. In other words, the patient may not feel pain or discomfort if the stoma becomes lacerated or injured. Therefore, your thorough clinical assessment of the stoma and the surrounding skin is essential to catching problems early.

Ostomy basics for healthcare clinicians: upcoming wound care conference session

As the third largest wound care conference in the nation, Wild on Wounds (WOW) is focused on advancing the healthcare workforce with impactful, innovative, hands-on wound care education built by and for clinicians.

This year, Joy Hooper, RN, BSN, CWOCN, OMS, WCC, AWCC, will present, “Ostomy: Basics and Beyond” which will provide a better level of understanding of colostomy, ileostomy, and urostomy surgery. The surgeries will be explained in a simple, relatable show-and-tell progression that builds on healthcare clinicians’ understanding GI tract anatomy. The presentation will include the concepts of peristomal skin protection from output and the different types of appliances available. The session will also include trouble shooting common peristomal skin common complications.

The session is intended for dieticians, nurses, and physical therapists and offers 4.00 contact hours. Learning objectives from the session include:

  • Identifying how to communicate basic ostomy care based on individual type of ostomy as it relates to a patient’s ostomy type
  • Selecting interventions to preserve peristomal skin integrity
  • Recognizing how to use ostomy products to customize fit thus promoting quality of life

WOW details

This year’s 17th annual WOW event is brought to you by the Wound Care Education Institute (WCEI) and Nurse.com, part of the parent company Relias’ family of brands. The conference will take place from September 13–16 in Hollywood, Florida. Conference attendees can choose from dozens of educational sessions and earn up to 25 contact hours for CE credits.

WOW offers innovative, interactive, and informative sessions, including simulation workshops, live product demonstrations, and a new pre-conference track with an entire day of legal sessions. Also new this year is a virtual poster hall featuring the latest in clinical research, clinical practice outcomes, evidence-based interventions, new technology, management of complex wounds, and more.

To learn more and register for Wild on Wounds, visit here.

-Natalie Vaughn, MBA, Senior Content Marketing Manager, Relias

We’re here for Colorectal Cancer Survivors

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By Cheryl Ory, UOAA President

President Biden has proclaimed March 2023 National Colorectal Cancer Awareness Month. The American Cancer Society says that colorectal cancer is the third leading cause of cancer related deaths in both men and women. On another note, the death rate has been dropping for several decades. One reason is that treatments have improved. Another reason is that colorectal polyps are now being found more after screening and removed before they can turn into a cancer.

UOAA Advocate, ostomate and colorectal cancer survivor Allison Rosen speaks on the National Mall as part of the United in Blue Rally sponsored by Fight Colorectal Cancer. Video: United in Blue Rally on the Mall (1)

In 2008 I was diagnosed with Stage 3b colorectal cancer. I was told the cancer had been developing for at least 10 years or more, most likely when I was in my early 30’s. There was a polyp, if it had been removed at an earlier date the cancer would not have developed. After radiation, chemo, surgery, and more chemo I am now a colorectal cancer survivor with a permanent colostomy, an ostomy that has saved mine and others lives from not only cancer, but other debilitating diseases.

I’m happy that UOAA is standing alongside partner organizations like Fight Colorectal Cancer to push lawmakers into giving attention to the alarming rise in young people with colorectal cancer.

With younger people being as risk and diagnosed , The U.S Preventative Services Task Force lowered the recommended screening age to 45 in 2021.  One in five colorectal cancer patients is between the ages of 20-54. Talk to your doctor about options for colorectal cancer screening. As the Colon Cancer Coalition states with earlier screening and detection, “Colorectal Cancer can be  Preventable, Treatable, Beatable.”

If you are a person still at risk, like those with IBD, let me urge you to get screened. Screening can result in any colorectal cancers being found earlier when they are easier to treat.

Here at United Ostomy Associations of America (UOAA) we have a long legacy of supporting the survivors of cancer and many other conditions so that they can have best quality of life possible. If your cancer requires a life-saving ostomy surgery remember-you are not alone. 725,000- 1 million people in the U.S. of all ages and backgrounds live with an ostomy.

Every individual person’s disease treatment is unique but ostomy surgery for colorectal cancer may mean a temporary ileostomy (from the small intestine) or colostomy (large intestine). This may be required to give a portion of the bowel a chance to rest and heal. When healing has occurred, the colostomy can often be reversed and normal bowel function restored.  It’s important to know that not everyone with an ostomy will be a candidate for a reversal operation. A permanent colostomy may be required when a disease affects the end part of the colon or rectum.

We have new Living with a Colostomy guide and ileostomy guide to help you learn as much as possible before or after you have this life changing surgery.

It’s especially important to connect with one of hundreds of  UOAA Affiliated Ostomy Support Groups in the U.S. before, or shortly after, your surgery. Peer support and preparation can put you on the path to success in what may be a challenging time both emotionally and physically.  Ask if the hospital has a certified ostomy nurse and insist on having your stoma placement marked before surgery. These and other self-advocacy tools are paramount and outlined in our Ostomy Patient Bill of Rights.

You may feel too overwhelmed as you are discharged at the hospital to fully understand ostomy pouching systems and accessories and lifestyle considerations. If you have a  medical question contact your doctor or nurse, but if you have a quality of life question-UOAA resources here at ostomy.org and peers at UOAA Affiliated Support Groups likely have the answers.

It’s important to learn the facts about living with an ostomy. After the healing period outlined by your surgeon you can swim, bathe, be intimate, travel, and embrace a new normal life. After some trial and error, you may also eat most of the foods you have been able to eat in the past. Education is key to battling misinformation.

Unfortunately misinformation and stigmas surrounding both ostomy surgery and colorectal cancer affect the number of people getting screened or getting the medical treatment they need.  Let’s work together to educate, advocate and support survivors.

 

Cheryl Ory is a colorectal cancer survivor who received a permanent colostomy in 2008. Cheryl is a Registered Nurse who has had a passion for volunteering with the ostomy community ever since and first joined UOAA’s Board of Directors in 2015. She now holds the position of President.

 

 

 

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. 

New Changes to CDC Guidelines Should Protect Medication for Ostomy Output Uses

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By UOAA Advocacy Manager Jeanine Gleba, MEd.

For several years UOAA has been advocating for those in the ostomy and digestive disease communities who use opioids for non-pain conditions. In UOAA’s May 2022 ENewsletter we reported that UOAA submitted federal comments with the National Center for Injury and Prevention and Control at the Centers for Disease Control and Prevention on its draft update of the 2016 CDC Guidelines for Prescribing Opioids for Chronic Pain. We recommended that the guidelines should not be intended for primary care physicians and other clinicians providing non-pain care for outpatients such as those with digestive diseases resulting in an ostomy or fecal continent diversion who may use opioids to manage high output stomas or patients with short bowel syndrome.  

On November 4th, the CDC released the updated Clinical Practice Guidelines for Prescribing Opioids for Pain – United States, 2022. They had over 5500 public comments submitted.

Our voices were heard! In the CDC Response to Public Comments on the Draft 2022 Clinical Practice Guideline for Prescribing Opioids for Pain they specifically mention our submission under the “summary of themes that emerged from the public comments submitted to CDC” bullet number six:  

  • Some respondents representing non-pain related conditions that use opioids for treatment (e.g., ostomy-related conditions and restless leg syndrome [RLS]) proposed that the Guideline title should be adjusted to better reflect its content and intended use. 

Then on page 4 under the “summary of edits the CDC made to the draft 2022 Clinical Practice Guideline based on public comment” bullets 2 and 3 apply to our comments and concerns:

  • CDC changed the name of the document from the CDC Clinical Practice Guideline for Prescribing Opioids to CDC Clinical Practice Guideline for Prescribing Opioids for Pain to further emphasize its focus on prescription opioids for the treatment of pain. 
  • CDC added language throughout the document to emphasize that the 2022 Clinical Practice Guideline provides voluntary clinical practice recommendations that are not intended to be inflexible standards of care or implemented as absolute limits of policy or practice for patients by clinicians, healthcare systems, or government entities. 

They did not specifically add any statement that the guidelines are not intended for primary care physicians and other clinicians providing non-pain care for outpatients with chronic and acute digestive diseases; however, the important takeaways from the document for our patient population are the following:

1) The voluntary guideline is intended ONLY for primary care clinicians and other clinicians providing PAIN care (acute pain, subacute pain and chronic pain).

2) The guideline is not a replacement for clinical judgment or individualized person-centered care.

3) The guideline should not be applied as inflexible standards of care across patients or patient populations by healthcare professionals, health systems, pharmacies, third-party payors or state, local or federal organizations or entities.

4) The guideline is not a law, regulation or policy that dictates clinical practice.

5) As stated on page 5 – “To avoid unintended consequences for patients, this clinical practice guideline should NOT be misapplied, or policies derived from it, beyond its intended use. Examples of misapplication or inappropriate policies include being inflexible on opioid dosage and duration, discontinuing or dismissing patients from a practice…and applying recommendations to populations that are not a focus of the clinical practice guideline.” 

In conclusion, it is clear that these new guidelines should not be applied to our patient populations utilizing opioids for non-pain treatments in accordance with the recommendations of their physician, which was the goal of our advocacy effort. 

With the updated CDC guidelines there should no longer be any misinterpretation of their voluntary recommendations. Our patient community will be protected and should not be restricted access to their lifesaving treatment. 

 

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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.”