Colorectal cancer survivor Allison shares her ostomy story. “No one truly understands what you are going through physically and psychologically more than those who have been there themselves.” Check out her mythbusting videos and more.
Embracing Ostomy Advocacy and Giving Back
By Angie Davenport
I’ve had my ileostomy for 38 years due to ulcerative colitis but I only recently went public to encourage other ostomates. Over the years I’ve helped many individuals by word of mouth while keeping my ileostomy private to the outside world. I have always wanted to be a blessing on a wider scope though to others with ostomies.
I was first diagnosed with ulcerative colitis in 1980 when I was three months pregnant. At first, I thought it was pregnancy symptoms. After a major episode, I was treated with medication for ulcerative colitis. My son, James was born a few weeks early due to complications.
After the birth of my son in March of 1981, everything was under control and I eventually relocated from Warren, Ohio to Atlanta, Georgia. While living in Atlanta I had a major setback with ulcerative colitis and I had to fly back to Ohio immediately and went directly to the hospital.
After several weeks of treatments in the hospital, my doctor came into my hospital room one night and said we have to do surgery or you won’t make it 24 hours. I’ll never forget my mom crying and praying for God to give her my disease so I could have a normal life.
When I received my permanent ileostomy in March of 1982 I was a young 23-year-old single mom. It was the day before my son’s first birthday. I had never heard of an ostomy. When I woke up in ICU I was devastated, ashamed and frightened. I thought my life was over.
Once I became strong enough physically and mentally I moved back to Atlanta. I was still feeling ashamed and frustrated until my physician in Georgia recommended I attend the local United Ostomy Association (the precursor to UOAA) support group.
While living in Atlanta I became very involved with the UOA group and completed the visitor training program. I enjoyed visiting new ostomates at the hospital. I felt the freedom to be involved because no one really knew me in Atlanta. I remained active until I relocated back to Ohio in 1985. That same year I married my high school sweetheart and we will celebrate 36 years of marriage in November.
Although I was very private about my ostomy I was very successful in my career. I became the first African American female officer at our local bank and functioned in several positions without the exposure of my ileostomy. After the downsizing of my employer, I later worked 10 years at Great Lake Cheese until retiring in 2016.
What is my purpose in life? How can I make my mom proud?
I’ve enjoyed my life as an ostomate. I love traveling, cruising and shopping. I was known in the business community as a person that loved to dress. I taught Dress for Success at the bank for all new tellers.
The past few years were filled with so much grief, with the most current being the death of my mom on July 4th 2019, only three days after my 60th birthday. I was feeling the deep void of losing a brother and both parents within 4 years, depression was setting in. I had support but I felt helpless and lost. What is my purpose in life? How can I make my mom proud?
Most will remember 2020 as a horrific year with so much sickness, death and devastation from a deadly pandemic. For me, I utilized the time to seriously seek God for a purpose in my life and being quarantined turned out to be a blessing in helping me find my purpose.
I knew my testimony would bring awareness and hope to so many people.
I became more involved via social media with other ostomates. I’ve met some wonderful friends and it became rewarding to encourage others that had shared similar experiences as me. My heart was really saddened when I read an article about a young man that had gone to court for the right to die because he didn’t want to live with an ostomy. I wept. Also seeing how some individuals can’t afford the basic ostomy supplies and had to use grocery store bags and tape to secure their ostomy bags was heartbreaking. I knew then, that there was so much more I could do for the ostomy community. I knew my testimony would bring awareness and hope to so many people.
As a member of Jearlean Taylor’s Ostomy Stylzz Facebook Group I participated in a virtual fashion show. She is a personal inspiration to me and that show boosted my confidence to a much greater level. I felt a relief to go public. I chose August 14th, 2020 to go live on Facebook and share my story. I felt such freedom once I finished. There were family members, coworkers, church and community friends that responded and supported me in disbelief. For the past 38 years, they never knew I had an ostomy.
One family friend messaged me and told me that he was scheduled for surgery but has canceled many times, but because of my video he felt he could now go through it. I still check on him to make sure he’s not having any problems. That made going public all worth it. But what else could I do?
I decided to participate in the Run for Resilience Ostomy 5K. I registered over 20 walkers to participate virtually in several cities and I exceeded my fundraising goal by almost 100%. The highlight of the day was my local mayor stopping by to present me with a proclamation from the City of Warren in support of ostomy awareness. Our local newspaper also highlighted the event.
…because of my video he felt he could now go through it.
After posting my Ostomy Awareness Day photos and story on Facebook I was contacted by so many family and friends willing to support me in the future.
With the pandemic still active, I’ve been limited in getting out in the public but I do try to make an effort to encourage other ostomates daily. I’ve connected with my local Affiliated Support Group leader and I’m looking forward to greater things once we can meet publicly.
On, March 6, 2021 I will be a 39-year ostomate.
I’m on Facebook and I have a Youtube video discussing my ostomy journey.
I’m free, living with my ostomy!
Ostomate or Person Living with an Ostomy?
“Labels are for soup cans.” ~ Grist Mill Road by Christopher Yates
by Jeanine Gleba, UOAA Advocacy Manager with Keagan Lynggard, UOAA Advocacy Committee Member
The UOAA Advocacy Committee produces many educational resources and self-advocacy tools for the benefit of you; you being a person living with an ostomy or continent diversion. Our dilemma has been what to call you or how to refer to you within the context of advocating, educating, and supporting, as you are the subject of what we write about. Sometimes we call you “a person living with an ostomy or continent diversion”. That takes nine words to describe one aspect of your life and this becomes very difficult and cumbersome to write over and over again in a single advocacy or educational document. There is however, a definite trend on social media and with online bloggers to use the word “ostomate” when referring to you, and the community of people who live with an ostomy.
As a national organization that supports all people living with an ostomy it’s crucial that we are sensitive and choose our words wisely so that they are acceptable to our community. Ostomy surgery is already a delicate topic that is often associated with “bathroom talk”, a topic that already has enough of its own societal taboos. Recently our Committee set out to gather survey data to hear from YOU, the people that our work impacts to identify the more acceptable or best term to use in our advocacy written materials and presentations concerning ostomy awareness and education.
Is this a label?
Our surveys certainly sparked an interesting debate. Many responders assumed that we wanted to “label” our community in a derogatory way versus our intention which was to simply look for a word to identify our medical demographic and represent the people we impact. As I read the comments from our responders and thought about what we were looking for, it made me wonder if this is how “labels” are born? Do they arise when people search for a simple and easy to use term to describe something? What happens when a label sticks and there is a negative stigma or insensitivity to those with a particular condition? As I pondered these questions and continued to review further comments, I realized that many people do prefer a simple word (or label) to identify their medical condition. It helps some people feel a sense of belonging and unity within a unique group. So I’m not sure what we would even call the word: a “term” or a “name” or a “label”? It’s also important to stress that although we were looking for a simpler non-offensive term it wasn’t meant to completely and irrevocably replace a “person living with an ostomy”. In fact, the definition of the word “ostomate” is simply a person who has undergone an ostomy.
And the preferred term is…
Here are the results of our surveys:
Total Votes: 331
34% (113 votes) Person with an ostomy
61% (201 votes) Ostomate
5% (17 votes) Other
191 Votes via Facebook
37% (71 votes) Person with an Ostomy
63% (120 votes) Ostomate
23 Votes via Twitter
48% (11 votes) Person with an ostomy
52% (12) Ostomate
117 Responses via Survey Monkey
27% (31 votes) Person with an Ostomy
59% (69 votes) Ostomate
14% (17 votes) Other
Does age affect preference?
In the Survey Monkey survey we asked a few more questions to gain a better understanding of the responders, such as gender, age, or whether their ostomy was temporary or permanent. 98% of the responders had a permanent ostomy with over 80% being older than 55 years of age. Of this older population 62% were female and 38% were male. Of interest the males were 50-50 in their selection of preferred term. Whereas, only 17% of females preferred “person with living with an ostomy”. If this had been a science experiment, and I had to develop an initial hypothesis, given the social trends on the internet, I would have predicted that the term “ostomate” was going to be more favorable for the younger generation. Our results proved this wrong!
We also provided an opportunity for people to list a specific “other” term that they would prefer and only three had a specific response like “Packin’ a Pouch”. For the majority of those who selected “other” they did not list another term but rather said it was actually ok to use “ostomate” or they didn’t care, which in turn would increase the # of who prefer “ostomate”. Nineteen percent (3/16 responses) did not want any term.
For the question “For those who do not like the term ostomate, why?” these were some of the reasons why:
· Because I am more than my ostomy or my ostomy doesn’t define me
· Labels what/who you are
· People won’t know what ostomate means or it always needs more explanation
Until you walk in someone else’s shoes…
Here’s what people were saying:
“I don’t want to be defined by my ostomy. Giving me a title/name defines me. I am a mother, a wife, a nurse, and a friend. Those things define me. Not my ostomy. While my ostomy is a part of my life, it does not define my life. PLEASE get away from the term “ostomate.”
“I prefer to focus on the positive – I am LIVING with an ostomy. Ostomate sounds harsh.”
“I also like “Person living with an ostomy”, but Ostomate is easier. What I really don’t like is use of the word “bag” which many, many people, ostomates, nurses and doctors continue to use. It’s very upsetting!” (Check out the Vegan Ostomy blog on this topic.)
“This term is commonly thought to be someone with a bowel ostomy. Mine is an urostomy. I’d like to see a term implies all ostomies.”
“Living with an ostomy sounds better to me and denotes the fact the ostomy gives a person additional life.”
“It labels people (similar to how one would not want to be referred to as the amputee, the diabetic, the bipolar, etc.)”
“I am not a “joiner” and do not plan on meeting others with similar conditions.”
Of notable interest 16/55 people answered this question with a response that they actually like the term ostomate.
In general our overall analysis found that although we did receive a few “neither” or “either” comments followed with the pattern of commentary along the lines of “my ostomy does not define me”, the vast majority preferred the term “ostomate”. We also received comments that support the idea that those who prefer the term ostomate are those familiar with the literal definition of ostomate, those who are involved/active within the ostomy community, or those who have really embraced this aspect of their life. This sense of community was evident in the survey question showing over 70% of responders belong to some sort of support community either online or an ostomy support group.
There is no right answer.
In conclusion, the Advocacy Committee has decided that in most cases we will continue to use the terminology “person living with an ostomy”, which is less “defining”, in our materials; however, given the results of the survey we will also now more freely and confidently include the term “ostomate” in order to simplify a document or when the term is more suitable for our advocacy purposes. I believe in our society of political correctness, we will never be able to please everyone, but we should always aspire to do our best, be respectful of all and try not to stir the pot by adding salt to wounds that are in the process of healing.
Thank you again to all those who participated in the survey and contributed to helping us gather this valuable information.
United Ostomy Associations of America
P.O. Box 525
Kennebunk, ME 04043-0525
Call us toll-free at: 1-800-826-0826.
Our Information Line hours are Monday-Friday, 9am to 3pm (Wednesday until 2pm) EST. If you have an emergency, please dial 911 or contact your local medical professional.
Please understand that UOAA is a private, nonprofit, advocacy and informational organization. We are not a medical facility and we do not have medical or legal professionals on staff. Therefore, UOAA does not provide Medical, Mental Health, Insurance or Legal Advice.
UOAA is the leading organization proactively advocating on behalf of the ostomy community. Recognizing that we are always stronger together, we encourage everyone to get involved by joining our Advocacy Network. We’ve also created several Advocacy Tools and Resources to help you successfully advocate on behalf of the ostomy community to ensure every ostomate receives quality care.
UOAA does not and shall not discriminate on the basis of race, color, religion (creed), gender, gender expression, age, national origin (ancestry), disability, marital status, sexual orientation, or military status, in any of its activities or operations.