Tag Archive for: urostomy

Know Your Ostomy

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Expect More – Take Control of Your Health Care

Part 2 in Series

By Joanna Burgess-Stocks, BSN, RN, CWOCN, UOAA Advocacy Chair

Good communication skills are the key to problem-solving.  This became clear to me when, as an ostomy nurse, I found myself having to unravel what people were trying to tell me when facing a problem.  I realized I was speaking a medical language that was not always understood, and my patients were trying to work with that language the best that they could, but miscommunication often happened, resulting in unresolved problems. One day it dawned on me that I needed to do a better job in teaching my patients ostomy language. Sometimes a change just takes a moment of truth.

My moment of truth!

I was excited and determined as a new ostomy nurse to make a difference in people’s lives and knew that I could, after having lived with an ostomy most of my life; since age three.  My responsibilities in the hospital setting were to teach people how to care for their ostomy after surgery. I would make sure my patient or their caregiver knew the basics of ostomy care. On the last day before discharge home, I would focus on how to order supplies.  I would then say my goodbyes with a simple “call me if you need me”. I realize now, as an experienced nurse, that this was only part of the story. It was not until I became involved with my local UOAA Affiliated Support Group (ASG) and started following online support groups that I became aware of the challenges people experience once they are home and face ostomy care on their own. My moment of truth came one day as I was lying on my bed with my laptop reading story after story on the online support group Inspire of people and their loved ones trying to problem solve skin and stoma issues and difficulties with trying to keep a pouch in place. There I was, an ostomate and nurse who had every resource available to me yet all I could do was offer words of encouragement and some basic information. I realized that I could not adequately offer advice because it was very hard for people to describe what was happening and I didn’t always understand what they were describing to me and sometimes they did not understand what I was saying to them.    

Changing my Approach

I started to pay closer attention to what my own patients would say to me when they called with a problem and realized that they too had difficulty describing the issues. I had taken for granted that ostomy medical language was second nature to me, but not for them.

Because the patients were not able to tell me the problems they had with managing their ostomies in a way that I could use, I was often left with more questions. I could only offer limited answers and my efforts to help often felt useless. Being a medical professional for most of my life, I felt humbled realizing that medical language can be difficult for people to understand.  Unless you have worked in or been around hospitals, you might not have learned medical words. It is mind-boggling just to know the words to use for ostomies. To get the true feeling, it would be as if I were suddenly thrown into having to build my own house and had to understand all the words involved with building. I would be lost!

The challenges that ostomates face at home motivated me to start an outpatient ostomy clinic connected with my hospital so that my community of people had somewhere to go for help.  After seeing patients in the clinic I learned that many ostomates had no idea how to describe the problems they were having with their stoma or skin. Some did not know the type of ostomy they had, some could not describe their stoma and most had difficulty describing their skin problems other than using the words:  red, painful and hurting.

Gaining Wisdom:

What I have found over the years, is that the better my patients are able to describe the problems they are having with their ostomy, the more I am able to help them come to a successful solution; whereby, they are able to help themselves. These patients also feel more confident to explore different pouch choices on their own because they have the confidence to tell vendors ( ostomy supply companies) their own stoma and skin problems. Thus the right pouching  system “match” is more likely to happen, resulting in a positive result and better quality of life. I now know that just as important as teaching someone ostomy care, it is also important to teach the language that is a part of that care.

As you read these tips on ostomy language, be patient with yourself. It takes anywhere from 6-12 months to speak the language of ostomies according to some ostomy nurses!

Know your Ostomy Type (and whether it is permanent or temporary)

Know How to Describe your Stoma:

“Stoma” an opening created by ostomy surgery.
It is located on the abdomen and is red/dark pink in color, moist and shiny.
Some describe it as looking like a rosebud.

Take a look at your stoma. In front of a mirror, look at how the stoma changes when you are standing still, twisting from side to side, bending over, sitting, and lying down. Once you have done that, you can ask yourself the following questions about your stoma:

What Does the Skin Around your Stoma Look Like:

  • Flat and no wrinkles/creasing
  • Skin folds/wrinkles  (describe where and when you see wrinkles and folds; for example “ when I sit I have creasing on the right and left side of the stoma”)

Shape:

  • Round
  • Oval
  • Irregular
  • Smaller at the top, larger at the bottom
  • Larger at the top, smaller at the bottom
  • Has one opening
  • Has two openings

Color:

  • Red
  • Pink
  • Brown (not normal)
  • Black (not normal)
  • Maroon, Blue/Purple (not normal)

Stoma Position and Level:

  • Below skin level ( in a skin fold or sunken)
  • Flush to skin level/at skin level
  • Above skin level

Know your Stoma Location:

  • Right side of the abdomen above the belly button
  • Right side of the abdomen below the belly button
  • Left side of the abdomen above the level of the belly button
  • Left side of the abdomen below the level of the belly button
  • In or near a skin crease
  • In or near a skin fold
  • On a flat skin surface

Know your Stoma size:

  • Use measuring guide to match the size
  • Round stomas are measured by diameter
  • Oval stomas are measured by widest length and width
  • Learn how to measure your stoma here

Know where the stool or urine comes out of the stoma ( this is called the “os” meaning mouth or opening)

  • On the top of the stoma and centrally located
  • Located on the side of the stoma (left or right)
  • Located on the underside of the stoma
  • Located level with skin

Know How to Describe your Effluent (output from stoma)

For a stoma that drains feces/stool

  • Color: brown, green, black, red and black
  • Consistency: thin and watery, loose, thick, soft, formed, pasty
  • Odor: no odor, mild odor, offensive
  • Amount: High output and loose, High output and thick/formed, no output, low output
  • Number of times a day you empty the pouch.

For a stoma that drains urine:

  • Color: Clear, cloudy, amber, straw, blood tinged
  • Odor: no odor, musty, fishy, fecal ( stool smell)
  • Volume: No output, low output, high output
  • Substances other than fluid (e.g., grit, crystals, mucus).

Know Your Peristomal Skin ( the skin around the stoma):

  • The skin is intact, not raw – no skin breakdown
  • The skin has sores – blisters, or looks like a blister without the skin on top
  • The skin is discolored (red, pink, purple, bruised)
  • Skin sensation (normal, itching, burning, painful)

Normal peristomal skin does not have sores, discoloration, pain, itching or burning.

Final Thoughts on Ostomy “Lingo”

Learning a new language can be difficult. My hope is that you will take the time to understand and know ostomy language so that you too will be an expert. The more you know and understand, the better you will be at expressing your needs and be able to find the best pouching system for you. Use this Know Your Ostomy Checklist the next time you need to talk about your ostomy, and see how much it helps!  

What’s in a Name?

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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.

Tag Archive for: urostomy

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