I started my career as a surgical ICU and flight nurse providing care to the critically ill both on the ground and in the air. Flash forward 34 years, I now am the complex abdomen specialist at Regions Hospital, which is a Level I Trauma Center in St. Paul, Minnesota. As a wound and ostomy certified nurse, I specialize in complex abdominal wall injuries and enteric fistulas. I often see patients with abdominal disasters that require many levels of support including diverting ostomies and total parenteral nutrition (TPN).

A rare and serious condition called Short Bowel Syndrome (SBS) occurs in patients when part of their intestines are surgically removed or injured, and the remaining intestine may not be able to absorb enough nutrients from food and drink.

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/.

In my experience, SBS doesn’t impact life early on in a trauma patient’s world while in the ICU. At that time, they often have little to no output of fecal matter because the body is working overtime to support the heart, lungs, brain, etc. Patients’ memories of the hospitalization usually begin once they reach our general care floor, which is when they start to mobilize, eat, and drink.

All this happening simultaneously with a patient awaking to learn that they now have an ostomy can often feel overwhelming to a patient and the family or friends who care for them. Patients and family caregivers may experience grief at the realization that they now have a temporary or irreversible ostomy. The emotional adjustment can take time. And since management of the ostomy and pouch is frequently paired with that of other injuries sustained by the patient, education is incredibly significant at this stage.

At our hospital, we have a stepwise program that involves the entire facility care team – dieticians, surgical staff, bedside nurses, patient care assistants, and other allied health professionals. We start by explaining what is happening with the patient’s body and why it requires management: SBS puts patients at risk for malnutrition, electrolyte disturbances, dehydration, and increased ostomy output. Additionally, patients and family caregivers often go through the stages of grief while mourning the loss of what they consider to be a normal lifestyle. Patient and caregiver education is incredibly significant at this stage. 

 

When it comes to SBS, I often quote nutrition support specialist, Carol Parrish, MS, RDN, “It’s not the length of the bowel, it’s the functionality.” In my opinion, following Ms. Parrish’s handbook for SBS is beneficial to the patient. You can’t prepare a patient for what comes with an SBS diagnosis, and no two situations are the same. When possible, we try to eliminate the need for long-term TPN for our patients and move toward management of SBS through strict meal planning and medication.

 

Weaning off TPN is a process that takes time, patience and commitment from patients and caregivers. It is important to educate and re-educate the care teams on medication choices and food and drink choices. I’ve seen great success from patients and caregivers that are diligent in tracking how certain food and drink affect them beyond their stay in the hospital.

 

SBS is a rare condition that is still not widely recognized in the medical community. More education for providers and access to care for patients is essential. Teamwork is key in managing the changes and challenges that come with an SBS diagnosis. There are resources available to help patients and caregivers as they navigate the journey with SBS and seek support.

 

Mary Anne Obst RN, BSN, CCRN, CWON, CWS is a complex abdomen specialist at Regions Hospital in St. Paul, Minnesota.

 

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.

This event has passed but you can view it below. “This is My Life Now: A Patient Guide to Advocacy” By ConvaTec featuring UOAA Advocates.

Join ConvaTec for a live discussion with ostomates, nurses and other healthcare professionals at their two-session, one-day virtual summit on Friday, October 1, 2021.

“Ostomates’ Rights Are Human Rights – anytime and anywhere” is this year’s World Ostomy Day theme, which is why ConvaTec is bringing together ostomates, nurses and caregivers to lead open discussions that will be patient rights-focused fostering awareness, education, and advocacy.  Together we will have conversations that matter!

The Patient Summit will be broken into two sessions:

Session 1, 1pm EST: This Is My Life Now: A Patient’s Guide to Advocacy:

Joanna Burgess, BSN, RN, CWOCN. Is a WOC Nurse at Convatec and is Co-Chair of UOAA’s Advocacy Committee

Jeanine Gleba, MEd., UOAA Advocacy Manager

Ellyn Mantell is a UOAA Advocate, Author and Ostomy Support Group Leader.

Did you know that by knowing your patient rights and feeling empowered and exercising those rights – you can take those situations where you felt down and make it positive. Think, “This is MY life now. I have the right to be me.”

Learn about your local and international ostomy support resources, understand your patient rights, and feel empowered to exercise those rights in this session.

Scheduled panelists:

• Ellyn Mantell (United States), UOAA Advocate, Ostomy Support Group Leader

• Jeanine Gleba (United States), United Ostomy Associations of America, Advocacy Manager

• Joanna Burgess (United States), WOCN, ConvaTec me+™ Nurse, UOAA Advocacy Committee Co-Chair

 

Session 2, 3pm EST: Creating a Healthy Bond: Healthcare Support for Your Patients:

Allison Rosen is UOAA’s World Ostomy Day Champion, a colorectal cancer advocate and Ostomy Support Team Member at MD Anderson.

Healthy bonds in life are all around us. But there may be times it feels difficult to bond. Do you know, or do your patients know, about the resources available for support? Whether that is support with a nutritionist so they can learn about fiber intake, or with an exercise therapist to get guidance on hernia prevention. It could even be the support a therapist can provide navigating new emotions in your personal relationships. There are healthy bonds that can be built between an ostomate and their healthcare professionals.

Create a strong bond with your patients and healthcare providers. Get to know the different types of pre and post-operative support available.

Scheduled panelists:

• Lorena Eltz (Brazil), Patient Advocate

• Lorraine Grover (United Kingdom), Psychosexual Nurse Specialist

• Allison Rosen (United States), United Ostomy Associations of America- World Ostomy Day Champion

 

Editor’s note: This blog is from ConvaTec, Platinum Sponsor of the 2021 Run for Resilience Ostomy 5k. This event raises ostomy awareness and helps fund the services and programs of UOAA, a 501(c)(3) nonprofit organization.

 

In celebration of Wound, Ostomy, and Continence (WOC) Nurse Week 2021, help us to shine a bright light on these special nurses. They give us the hope, support, and specialized care needed to thrive in life with an ostomy.

WOC nurse volunteers spend countless hours advocating, leading support groups, educating, fundraising, and supporting UOAA programs and services. UOAA recognizes that not all ostomy patients have access to a WOC nurse and we’ll continue to advocate for access to a specialized ostomy nurse from preoperatively when your stoma site is marked through an ongoing lifetime continuum of care as outlined in our Ostomy and Continent Diversion Patient Bill of Rights.

We asked UOAA’s social media community to share how a WOC nurse has made a difference in your life, health, or support group. We hope more nurses will consider this rewarding specialty. Thank you WOC nurses, you are our guiding lights.

I would like to thank my WOC nurses who have and continue to support me as an ostomate. My nurses inspired me so much I went to nursing school and graduate this month with a BSN and plan on continuing on. To become a WOC nurse myself! Thank you WOC nurses! -Katie Lee

“My WOC was a lady named Gayle. She helped my Mom so much with me. I remember many visits to the ER ward and having her there. She was funny, nice and on it. I used to love seeing her. She stayed by my side from 3-6yr old into my adulthood. She fought hard to find a bag that was the perfect fit for me. She got a new product in and it changed my life significantly, she fought tooth and nail to keep me in that bag, even when Canada decided to stop offering it openly. I still wear that brand to this day. I always heard rumors she was also an Ostomate and I can’t say how long. That made me love her more. I will never forget those who had a hand in my welfare and saw me through their entire career. I miss her and the others immensely. Jody is my new WOC and although I rarely need her, she’s there to help, even if it’s a panic situation that couldn’t wait for an appointment.” –Camille C.

“Joanna Burgess Happy WOC Nurse week. You have been a true Angel of Mercy for me over the years!” –Col Justin Blum

“My son’s WOC nurses at CHLA were awesome!!” – Teri C.

I am a WOCN and worked with MANY ostomy patients in the past. The thanks go both ways — I have never (in a long nursing career) felt as appreciated for my clinical skills and assistance as I do when working with people with an ostomy. They are the reason I have stayed in nursing. -Cris R.

This is Karen with my husband at his 55th birthday party in 2019 -Pam Allen Williamson

We have 3 great WOC nurses in our community that come to our ostomy support meetings Karen Eubank, Michael Byars and Jason Pratt. Michael went above and beyond by creating a weekly outpatient ostomy clinic after I told him I learned some cities had those while attending a UOAA conference. Karen who has been coming to our meetings for over a decade, hosts many of our support group parties at her house, works at the ostomy clinic on a regular basis, pays to store donated supplies and often helps people after hours. Both of them visit my husband when he is hospitalized, came to the house to visit him when he was home on hospice and came to his funeral. We are extra grateful to Karen because before he left the hospital on hospice she applied a special high output bag connected to bed drainage bag to minimize the family’s need to interact with the ostomy. Karen who is a neighbor told me that she would come change the bag twice a week. The hospice nurse was fascinated and stayed late to watch Karen change it out. He was going to stay in the hospital as long as they would let him to avoid family having to deal with his bag because he had always been so independent with it until nearly the end. Karen’s solution allowed him to come home and be surrounded by family caregivers that loved him and have wonderful conversations remembering fun times and having important conversations instead of the visitor limitations hospitals right now. We are so grateful to her for this and hope it will benefit other families of bed-bound patients. BTW we still fondly remember my husband’s first WOCN Nurse Licklighter who was a nurse at Keesler AFB in 1993. She marked him before surgery and taught him how to handle his bag and he kept her handwritten instructions forever and sometimes copied them for others. -Pam A.W.

I can’t thank the nurses at Ohio Health Riverside Hospital they helped me so much and made an otherwise difficult transition quite non traumatic! –Carol B.

Thank you to Erin and Vanessa at New York Presbyterian! –Jameson Cycz

The ConvaTec nurse Lorelei. She has been a stoma saver. She helped me troubleshoot my leaking problem, got me into a new pouching system, that is awesome and when I ran out of samples and am in limbo with my supply company in getting the new pouches and other supplies, she set me up with a holdover supply, so that my stoma won’t be continuously injured by my current pouches.- Susan Gentner

I’m thankful for all of the WOCNs I have been to. Some I’ve known for many years. They are very knowledgeable and helpful with various products.I also want to give a shoutout to our great WOCNs at 11 Health & Technologies for being amazing for our team and patients. 💜 –Megan Alloway

Amazing Aimee Frisch. The best WOCN in know. Love you. -John Pederson

Happy ‪#WOCNurseWeek2021! What you do for ostomy patients and the impact you make is immeasurable!  Plus we are grateful for all that you do to support UOAA and our advocacy program! You are advocates for patients and can influence change. Shine on! @UOAA_Advocate -Jeanine Gleba