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Expect More – Take Control of Your Health Care 

Part 6 in Series

 

By Joanna Burgess-Stocks and Keagan Lynggard-Hysell

 

There are many different emotions you may experience as a new ostomate, and it is important to understand that physical and emotional healing after surgery may follow different timelines. We understand that everyone copes with emotions differently. Some people struggle for a long time. Whether you would like to seek individual support from a social worker, therapist, or other medical professional or prefer support from a peer mentor or by attending a local support group; understanding the emotional impact of ostomy surgery and receiving the appropriate support is an important part of taking control of your health care.

 

Witnessing the Emotional Impact- a WOC Nurse’s Perspective

“Hello, my name is Joanna.  I am here today because I am your ostomy nurse”.  

I have repeated that sentence hundreds of times over the last 12 years. I am in the unique situation in that I am meeting you at a pivotal moment in your life, heading in a direction you might never have imagined–facing ostomy surgery. During that initial encounter I am sometimes met with a blank stare, a stunned look of fear and dread, or with complete relief.  Whatever the reaction, I am the person that is there to help you navigate the world of living with an ostomy. I take great care during that initial visit to meet you where you are emotionally, knowing that this is a sensitive topic for you, someone who most likely is not used to talking about the way you go to the bathroom. Soon, however, I will share with you that I too am an ostomate (person living with an ostomy) and have been one for 53 years since the age of three!  As I leave you that first day, I finally see a glimmer in your eyes–hope! A sign that maybe this journey is possible and that you are not alone.

As an ostomy nurse, I have had the opportunity to meet patients in a variety of settings and have worked with hundreds of patients facing ostomy surgery whether it be from cancer, bowel or bladder diseases or from emergent situations.  No matter the reason, the anticipation of ostomy surgery is a step into the unknown and can compound the anger, sadness, and fear about the medical condition that caused you to need an ostomy. As you face these multitudes of feelings and adjust to life with an ostomy, know that you can take control of what may feel like an uncontrollable situation.

 

Facing the Emotional Impact- a Patient’s Perspective

“Good morning Keagan, today a special nurse is going to come and teach you how to care for your ostomy and help with your first bag change.”

A special nurse?–I thought to myself. Why do I need a special nurse to show me how to take care of my pouch? I had so many questions, a multitude of emotions, and I was feeling overwhelmed. So many things were out of my control, my recent diagnosis of Crohn’s disease, my hospitalization, my surgery, and now the responsibility of caring for my ostomy. I felt helpless and was eager for some independence in managing my body.

My WOC nurse entered the room and introduced herself with a smile. As she sat beside my bed listening to my fears and frustrations she explained how we were going to change my pouch. In an attempt to gain some independence, I told her that I wanted to take the pouch off myself and as I lifted the edge of the barrier just enough to see the edge of my stoma and the few black stitches poking through my skin– I lost it. I didn’t want to do it anymore, any of it. I didn’t want my insides on the outside, I was scared of my own body. My WOC nurse stepped right in with encouragement and support and a perspective I will never forget. She said she understood that what I was going through felt unmanageable but that caring for my stoma was something that would allow me to be self-sufficient, and that changing my pouch would give me independence in caring for my health. Since my very first pouch change, I have been encouraged to shift my perspective and to be proactive in the areas of my care where I can take control.

 

Seeking Individual Support

It is important for you to seek the resources needed to understand and work through the emotional impact related to ostomy surgery. It can be very helpful to have someone affirm your emotional concerns as you adapt to life with an ostomy. Most will find their path to acceptance as they physically begin to feel better and become comfortable with the care of their ostomy. If you are struggling with depression, how to tell others about your ostomy, or any part of the adaptation process (including the lack of will to learn self-care), seeking support through counseling can help you address these struggles. A licensed professional has the skills to help you create the life “tools” you need for navigating the unknown, including fears of introducing your ostomy into a new or existing relationship, addressing body image challenges, or understanding the grieving process. You can speak with your physician for a referral if needed.

 

Finding Support in Others

The fear of the unknown can often be soothed by learning from those who have gone through a similar experience. UOAA has approximately 300 Affiliated Support Groups throughout the United States, providing the opportunity for you to connect with others within your community who have also undergone ostomy surgery. To find a local support group near you, visit UOAA Support Group Finder. If you would like to connect with others but prefer to do so through an online format or from the comfort of your own home you can join a Virtual Support Group. Another way to gain support is through an ostomy mentor. Ostomate Lois Fink describes in her book Courage Takes Guts; Lessons Learned From A Lost Colon, meeting her mentor for the first time at a restaurant. The mentor was wearing a very slim dress and Lois felt perplexed, trying to figure out where she was hiding her ostomy pouch!  Lois learned that she could be the same fashionista that she always was while wearing an ostomy pouch and it helped her face her ostomy surgery with more strength and confidence.

To learn how to connect with an ostomy mentor, many UOAA Affiliated Support Groups have certified visitor programs or you can contact UOAA for a list of current ASG visitor programs at 1-800-826-0826.  

 

Our Hope for New and Struggling Ostomates

It is the hope of all of us at UOAA that one day you will be able to look at your stoma and see it as something that was life-altering and maybe even life-changing, but it was also life-giving. Be patient with yourself as you journey through both the physical and emotional healing process and be sure to utilize the available resources to support you every step of the way.

 

Additional Information & Support

UOAA has developed several tools to help you navigate through various informational topics at your own pace. To help better understand what ideally should happen before and after ostomy surgery we have developed the Ostomy and Continent Diversion Patient Bill of Rights. To learn some of the common “ostomy lingo” you can refer to our blog Know Your Ostomy and Know Your Ostomy Pouching System and Supplies. Complete the accompanying checklists and keep them handy for your ongoing ostomy care.

As a new ostomy patient, you may have concerns or face many unknowns. UOAA provides resources to answer these frequent concerns and questions to best equip you in living with an ostomy. Here are a few of the ostomy educational resources available at ostomy.org:

 

By Ed Pfueller, UOAA

There is no doubt the world would be a better place with more wound, ostomy and continence (WOC) nurses. For many, WOC nurses are the first sign of hope after a life-changing surgery. The right nurse can provide confidence when there is doubt, and comfort when there is pain or fear.

2017 Recipient of the UOAA WOC Nurse of the Year Award Frances Wilson with President Susan Burns.

April 15-21, 2018 marks WOC Nurse Appreciation Week and this year is also the 50th Anniversary of the Wound, Ostomy and Continence Nurses Society™ (WOCN®). For those of us at UOAA these nurses are so much more than medical professionals. They are our affiliated support group leaders, advocacy champions, cheerleaders, advisors, friends, national leaders, speakers, stoma clinic volunteers, event organizers, fundraisers and so much more.

It is one of our great joys (but also one of our biggest challenges) to select just one recipient of our WOC Nurse of the Year Award. Unsung and unrecognized nurses can be found in every corner of our national network of support.

Prepare to be inspired by these testimonials from our Affiliated Support Groups who nominated this year’s amazing group of nurses. Feel free to share with us in the comments a special nurse who has helped you on your journey and learn a bit about the people behind the credentials.

Anne Marie Knudsen
South Bay Ostomy Support Group in California

Anne has served as the group’s program coordinator 330 months (or 30 years and 11 months the nominators say.) She encourages doctors to utilize ostomy visitors to make a difference from day one. She provides free home visits to members and encourages all to attend meetings.

“She is always available, a mentor, has a compassionate heart, loves all ostomates and is an inspiration. She gives free time to the group and uses her own money to present gifts of appreciation to speakers. She will visit all who are desperate for care at no charge. I have the greatest respect for Ms. Knudsen she is an angel for sure!!”

Gina Day
Ostomy Support Group of the Poconos in Pennsylvania

Gina founded the group last year bringing much-needed ostomy support to the region. Gina provides educational programs for the group and heavily promotes the group in her area by hosting a Run for Resilience Walk Ostomy 5k walk, appearing in local media stories and last year even got the mayor to declare Ostomy Awareness Day.

“Her dedication, persistence and passion brought an awareness to our community that it so greatly deserves. Her positive personality and motivational disposition is an inspiration for our members. Gina Day connects with group members in an indescribably sincere manner. The support group slogan is “You will never be alone” and Gina sees to it that people are not. Gina fills the void and disconnect that some patients feel after they leave the hospital through her support and forums to share stories. Her outstanding expertise has benefited those living with an ostomy in our area greatly.”

Charlotte Popovich
Ostomy Association of Metro Denver

Charlotte is a tireless volunteer with a deep connection to the doctors and ostomates in her community judging by the pages of praise that accompany her nomination. They say she has an instinct for knowing when patients need that extra push of confidence to take matters into their own hands.

“Her strongest attribute is her total commitment to the ostomy community’s needs. It is amazing her attention to our new members’ medical and emotional needs as well as being available to them 24/7 at a moment’s notice. Her rate of referrals from surgeons is unmatched. After working all day, she voluntarily attends all evening support group meetings and does question and answer sessions to address patient concerns.”

And in a Letter from Dr. Sandosh Nandi

“The dedication to her craft is unparalleled. She is diligent, caring, knowledgeable and thorough. She has helped so many patients and the praises they sing go on and on. She not only teaches patients about their ostomy but helps them with social and mental hurdles as well. She takes calls on vacation and stops by someone’s house for an emergency change in the middle of the night. She is nothing short of amazing. Big heart and a very caring tough love approach.”

Lara Leininger
Triangle Area Ostomy Association in North Carolina

Lara is known as her group’s cheerleader in her role as a WOCN support nurse.  She supports guest speakers and is available to participants for one on one questions after formal meetings. She also makes her contact information available should questions arise from participants between monthly meetings. She supports the health and wellness of her group through her commitment to living a healthy lifestyle through exercise and helps others to believe that an ostomy does and should not limit a person’s life in any way.

“Lara, in her many years of working as a WOCN for the University of North Carolina Hospital, has shown love, compassion, care and kindness to her many ostomy patients and has shown ongoing support for her WOCN colleagues in her community. Lara has been so devoted to the ostomy community that in 2014 she co-founded the Wanna War One Ostomy Awareness 5K in Durham, NC. This empowering event now known as the Run For Resilience Ostomy 5K, supports the educational and advocacy programs of the UOAA. The event will be celebrating its fifth anniversary on October 2018 and will represent nine locations across the country. Lara has also been a dynamic volunteer and speaker at two UOAA national conferences and has shared the story of caring for her mother, an ostomate, through the Phoenix Magazine, Spring issue 2017. As stated in this article from her colleagues “Lara is a person and nurse of great care. She fills with emotion when talking about her love for her patients. When her mom became ill and it was evident that she was facing ostomy surgery, Lara dove deep into the journey with her mom. This is what Lara does and who she is”.

Angela Ladner
Gulfport Mississippi Ostomy Support Group

As part of the first UOAA support group in Mississippi Angela secured the location at Memorial Hospital for groups and arranges for local home health, pharmacies and manufacturer participation with the group.

“She encourages patients to participate in the group’s activities mentally and emotionally with body image issues. She is a liaison with physicians to encourage participation and outreach. She is caring and supportive of her population. Willing to assist in the needs of the patient and the family. She helps the indigent population with resources for supplies. She also coordinated an effort to assist flood victims in Houston with ostomy supplies. She is respected by patients, colleagues, and families.”

Kathryn Baxter
United Ostomy Support Group of Orange County NY

Kathy has been a been a devoted liaison, exceptional WOC/ET Nurse for the group for over 25 years. The group counts on her expertise and knowledgeable background as a PA in the busy NYC Hospital Mt.
Sinai.

“Kathy” as we all know her has always from the very first time she came to a meeting
has been interested in the complete rehabilitation of every ostomate. She finds ways often to
resolve the most difficult ostomy problems for those who think they will never have a resolution.
Kathryn finds the time to help in programming and acquisition of products for the Chapter.
If it weren’t for her support over the years this Chapter would cease to exist. We are
grateful for all the time and talent she has brought to us clinical evaluations, information support on newest equipment and surgeries, caring and advising meeting participants on what is available medically as well as psychologically.

United Ostomy Associations of America (UOAA) is presenting the 2018 WOC Nurse of the Year Award at the 2018 WOCN Annual Conference in Philadelphia.