Mentorship of the Patient With a New Ostomy, the Role of Ostomy Nurses and Support Groups, and the Impact on Quality of Life

Introduction

Annemarie Finn

Preparing for ostomy surgery can be a daunting experience, especially when that preparation is compounded with a devastating diagnosis of cancer. This article shows, through one woman’s experience, how ostomy mentorship and support can lead to a positive postoperative outcome and quality of life. The following is the story of Annemarie Finn, a survivor of bladder cancer. She takes us on a journey from diagnosis to life after surgery, introducing us to mentors she met along the way. 

As nurses, we know that we are educators and care providers. It is also important to remember our role as mentors in the therapeutic nurse-patient relationship. We are mentors because of the experiences we have working with patients who have each been on a unique journey. We keep a collection of patient stories in our minds–their outcomes, difficulties, successes, sorrows, and joys. We build on those experiences with each new patient we encounter and thus our ability to be a stronger and more effective mentor grows. As a mentor, we offer hope by telling patients that they are not alone and that we can connect them to a vast network of ongoing support that will encourage them for as long as needed during their time of adapting to and coping with a new ostomy. By being a mentor, we offer patients a direction to success and a glimmer of the possibility that although their lives will be changed, their lives will be good and maybe even better than before.

ANNEMARIE’S STORY

When I received my diagnosis of cancer, time stood still. I was overcome with many emotions, the most prevalent one being fear. Cancer is not a word anyone wants to hear, but it is something to which we can all relate because many families are touched by it. Most of us, if not all, know someone who has been affected. When I was diagnosed with bladder cancer in 2019, I went through all the stages of grief typical for patients with cancer. When I went to the urologist for my first cystoscopy, after a mass was found during a gynecologic ultrasound, I went alone. I was in total denial. I did not want to think about even the possibility of cancer. I had just been given the surprise of a lifetime: my son and his wife were expecting our first grandchild and I wanted to focus on that. However, I soon found out that the mass I had was cancer. Denial was quickly replaced by anger. I felt like my cancer had stolen what should have been a purely joyful time. 

I also had a major crisis of faith. I do not remember bargaining but I had a deep longing to be there for the birth of my grandson. I cried ... a lot. I could not talk about the future without crying, especially when I thought about the possibility of having a urostomy, which I hoped would not be needed. I developed shingles, I believe, from the stress. I was worried about chemotherapy, losing my hair, and how much time I had left. With the support of my family and friends who were with me throughout my treatment, I was able to cope with each aspect of therapy as it was presented to me. 

Unfortunately, the immunotherapy I received failed, and it was recommended that I follow-up with what I was told was “the gold standard of care” for bladder cancer–a radical cystectomy. Because of the proximity of the tumor, I did not qualify for a continent diversion and had to settle for an ileal conduit, which would mean having to wear an external pouch. This was my worst nightmare. For me, finding out I was going to wear a pouch was far more devastating than the news of the cancer itself. I had no point of reference; I had never heard of an ostomy before the diagnosis of bladder cancer. 

My imagination was in overdrive. My original urologist referred to me needing a “bag” after my bladder removal. What? I would spend the rest of my life with a “bag” of pee hanging from my belly? What kind of “bag”? How big? What if the “bag” broke? If you have ever seen the movie The Shining, you might remember the scene in which the elevator doors open and a torrent of blood rushes out. I envisioned torrents of urine soaking my clothes while I was out in public. I am a high school teacher, and I was afraid of this happening in front of a class of students. I thought I would be a freak. Although they tried to be there for me, my friends and family could not help me with these feelings. While everyone was extremely supportive, no one I knew had an ostomy. I had no one I could talk to about their experience. I was on my own and I was scared. It was not until I started working with my ostomy team that I was able to come to terms with my ostomy and my future. 

I was fortunate to participate in the Brigham and Women’s Cystectomy Pre-Habilitation class prior to my surgery. There, I was able to meet the ostomy nurses who would be helping me after my surgery. This one-and-a-half-hour course teaches patients what to expect before surgery, during recovery, and after discharge. Participants are provided with the prosthetic pouching supplies they will be using after their surgery. I was able to become familiar with the supplies and even practice with them. As a teacher, I believe knowledge is power. So much of my fear was of the unknown! This was the first time I handled, or even saw, ostomy supplies. 

Being able to practice with the various products allowed me to be proactive and feel less helpless. I was able to ask questions and was provided with some tremendously helpful advice. This personal connection eased some of the anxiety I was feeling. I knew I could turn to the nurses with my questions, and this is something I continue to do. Because of this experience, and with the support of these ostomy nurses, I had a better understanding of what to expect and more confidence in my ability to be able to handle things like changing my pouch independently. These ostomy nurses were my first mentors on this journey.   

My medical team also gave me information about the Bladder Cancer Advocacy Network (BCAN), a support network for patients with bladder cancer. It was there that I discovered a treasure trove of information for people facing bladder cancer. I was pointed in the direction of their program, “Survivor to Survivor,” which matches a patient with a new diagnosis to a mentor who has faced a similar diagnosis and surgery. After signing up for the program, and prior to my surgery, I was able to talk to a volunteer who had been through the same surgery I was now facing. They gave me an idea of what to expect from the surgery and after. They shared advice about living with an ostomy. They gave me tips about everything from how to recover from surgery to helpful supplies to keep on hand for changing my pouch. I have since become a patient mentor and have had a chance to guide and help others facing radical cystectomy with an ileal conduit because of bladder cancer. 

Another service that helped me learn how to live with my urostomy was the Brigham Ostomy Peer Visitor Program, much like the United Ostomy Associations of America (UOAA) Certified Visitor Training Program. While recovering in the hospital, I was visited by a specially trained volunteer who had a urostomy. It was the first time I was able to meet someone with a urostomy in person. I was heartened by how “normal” they looked. She answered all my questions and gave me hope. 

I want to emphasize how important it is to have ongoing access to certified ostomy nurses. When I was first released from the hospital, I was provided Visiting Nurses Association services, a type of home health nursing. I was fortunate to have a visiting nurse who was also a certified ostomy nurse. I also had continued access to the Brigham and Women’s ostomy nurses through their outpatient ostomy clinic. After surgery, I developed several skin issues, and it took the expertise of all my nurses working with me over the course of a year to find a pouching system that worked for me. 

Patients facing radical cystectomies and other life-changing surgeries often do not know what questions to ask. Questions do not arise until something untoward happens, such as continuous leaks or skin problems. Not knowing what to do is an overwhelming feeling. This is when dejection and depression set in. The role of the ostomy nurse in providing the necessary support and mentorship is key when seeking answers to questions and solutions to problems.

The final stage of grief is acceptance. Not only have I accepted my life with a urostomy, but I have also embraced it. I have joined UOAA and BCAN and am paying forward all the help I received by sharing my experiences, mentoring, and being involved with patient advocacy. I am doing everything I did before my diagnosis and urostomy–and even more. I still enjoy teaching and have not had a flood in my class! I also travel, swim, paddleboard, and hike. Most importantly, I have an even closer relationship with my husband and, together, we experienced the birth of our grandson!

There is a popular saying that “It takes a village” to face and solve difficulties. I have found this to be true on my journey. As a result of my “village,” that is, the support of my ostomy team, other people with an ostomy, and organizations such as UOAA and BCAN, I am cancer free 2 years after my surgery. Not only am I living a fulfilling life, but I am living my best life.

CLOSING REMARKS

Joanna Burgess-Stocks, BSN, RN, CWOCN

Multiple studies have found that patients who participate in ostomy support groups are more likely to adapt to life with a stoma and have a higher quality of life.¹ Patients who require ostomy surgery experience grief due to loss. Those who receive support in ostomy support groups are better able to maneuver through the stages of grief and accept their ostomy.² Patients who participate in ostomy support groups are more hopeful, willing to live fully, participate in different activities, are able to make new friends, and are more likely to help others.^2,3 

We know ostomy support groups provide the opportunity to discuss the emotional impact of ostomy surgery. You can refer your patients to find this type of help through UOAA, an organization that is dedicated to improving the lives of persons with an ostomy. UOAA’s mission is to “To promote the quality of life for people with ostomies and continent diversions through information, support, advocacy and collaboration.” They recognize the importance of having a hospital visitor and ostomy support groups, facilitate their formation, and provide programs that allow them to carry out UOAA’s mission. UOAA provides patients with a support group finder at https://www.ostomy.org/support-group-finder/.  In addition, many UOAA Affiliated Support Groups have been started by and are led by wound, ostomy, and continence nurse mentors. There are also many online support groups, such as Inspire, and private Facebook groups.

The story of Annemarie is the ultimate of success stories: the patient who starts out devastated and fearful due to a new cancer diagnosis who is facing life-altering/body-altering surgery. She is pointed in all the right directions by her care team and receives successful ostomy mentorship. She was able to come full circle and mentor and advocate for others facing a similar journey. Unfortunately, not all who face ostomy surgery have this opportunity or information. It is vital that we, as medical care providers, recognize that we are mentors for these patients and it is their right to be informed of available resources, be provided with emotional support opportunities, and receive quality care through all stages of the ostomy experience (see Figure; also found at https://www.ostomy.org/bill-of-rights/). There is no better feeling than seeing our patients succeed and thrive, knowing that we played a role in steering them in the right direction for healing of the body, mind, emotions, and spirit.

1. Cross HH, Hottenstein P. Starting and maintaining a hospital-based ostomy support group. J Wound Ostomy Continence Nurs. 2010;37(4):393–396. doi:10.1097/WON.0b013e3181e45794

2. Byfield D. The lived experiences of persons with ostomies attending a support group: a qualitative study. J Wound Ostomy Continence Nurs. 2020;47(5):489–495. doi:10.1097/WON.0000000000000696

3. Pittman J, Nichols T, Rawl SM. Evaluation of web-based ostomy patient support resources. J Wound Ostomy Continence Nurs. 2017;44(6):550–556. doi:10.1097/WON.0000000000000371

Annemarie Finn is the co-chair of United Ostomy Associations of America (UOAA) Education Committee. Joanna Burgess-Stocks is the co-chair of United Ostomy Associations of America (UOAA) Advocacy Committee. Inquiries can be made to: advocacy@ostomy.org. Information in this article was provided by UOAA. UOAA does not endorse particular products, manufacturers, providers, or other sellers of ostomy products. This column was not subject to the Wound Management & Prevention peer-review process.