Tag Archive for: colostomy

Top 5 Ostomy Concerns

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You may have questions about your ostomy, how to care for your stoma, and how to keep living the life you want to live – but you don’t have to figure it out on your own. Hollister Secure Start services offer free support for people living with an ostomy, regardless of the brand of products used. Below are five common questions we are asked from people in the ostomy community like you.

I’m having leakage under my pouching system.

To help solve the issue, we would ask several questions including the current pouching system being used, and the frequency of it being changed. Other questions that would assist us in problem solving might be—How are you preparing your skin before putting on your pouch? If the products are not being properly applied, it could cause adherence issues. Are you cleaning out your pouch or do you put anything in it? Most important, where is the leakage occurring? If it’s always in the same area, evaluate the area for any creases or uneven surfaces such as scar tissue, incisions, or your belly button that may cause an uneven surface under the barrier. If this is the cause, you might try a barrier ring as a filler to even out the surface area. However, make sure that the stoma size is correct in the barrier. You’ll know it’s a correct fit when the barrier fits where the skin and the stoma meet. There should be no skin exposed between the stoma and the opening of the barrier.

 

My skin is irritated and weepy.

This can be a problem for many people with an ostomy. A person should not have skin breakdown, open wounds, or a rash under the barrier. Where exactly is the skin breaking down? How long has it been going on? Is there a situation that may have led to this irritation, such as leakage or was your barrier removed too quickly? What product are you using to prepare your skin for the barrier? Try using stoma powder to absorb moisture from broken skin around the stoma, which may help allow the skin barrier to get better adherence. The cause of the skin irritation needs to be addressed in order to find solutions.

 

I am noticing an odor and I’m concerned others will too.

There can be an odor associated with emptying your pouch versus odor caused by leakage and we need to determine which one you are experiencing. A lubricating deodorant is a great choice for neutralizing the odor of the stool when the pouch is emptied. You might also consider a pouch that has a filter, which neutralizes odor caused by gas in the pouch. Make sure that no stool drainage gets on the outside of your closure system. If neither of these situations is the issue your barrier might be starting to lift off the skin, which can allow odor to escape and can be the beginning of a leakage.

 

My pouching system is not staying on. What can I do?

It may be a problem with your barrier seal. Make sure you have one that you can count on. Everybody is different when it comes to wear time. A good rule of thumb is to determine how many days you can rely on the product to provide a secure seal without experiencing leakage. Monitor the back of the barrier when you change the pouching system. If you see stool or urine from the stoma that has leaked under the barrier, it’s a sign that the barrier seal is compromised and the barrier can begin to lose adherence to the skin. If this occurs then the barrier should be changed. It’s important to change your product on a routine basis, which can be determined by the lack of stoma drainage under the barrier as well as the condition of your skin.

 

It is important that my pouching system is discreet. What can you recommend?

When a pouch fills with gas or drainage it will start to balloon out and might show under clothing. A pouch with a filter can help release the gas. Also consider emptying your pouch when it’s a third to a half full. When a pouch is full it could cause weightiness on the barrier, which might lead to leakage. When it comes to discretion, it’s important that you find the right pouching system for your body. Hollister offers both one- and two-piece systems. For a person with a colostomy or ileostomy, there are drainable and closed-end pouches in various lengths and options of transparent, ultra-clear and beige pouch films. Those with a urostomy can also choose from pouches with transparent, ultra-clear or beige film depending on the product they are using.

 

As always, it’s important to follow up with your healthcare professional or Wound, Ostomy, and Continence Nurse for clinical or medical advice.

 

Have a concern that wasn’t mentioned here?

Check out the helpful tips from Hollister Incorporated, Routine Care of Your Ostomy or go to Hollister.com and navigate to the Ostomy Care Resources to find accessory sheets, helpful brochures and videos.

 

Need someone to talk to?

Hollister Secure Start services is here to help! Call us today at 1.888.808.7456.

 

Nothing contained herein should be considered medical advice. Medical advice can only be provided by an individual’s personal doctor or medical professional.

Editor’s note: This educational article is from one of our digital sponsors, Hollister Incorporated. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Know Your Ostomy Pouching System & Supplies

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Expect More – Take Control of Your Health Care

Part 3 in Series

By Jeanine Gleba and Keagan Lynggard-Hysell

The Choice is Yours

Having the right ostomy supplies for your individual lifestyle and stoma type plays a huge role in the quality of your life. As a new ostomate I fell victim to the common misconceptions that daily leakage and skin irritation were normal occurrences that came with the territory of having an ostomy, when in reality I was going through unnecessary struggles due to the fact that I wasn’t using the best products for my individual situation.

For those unfamiliar with my story, shortly after my diagnosis of Crohn’s disease in 2005, I was rushed to the Emergency Department with a bowel perforation and underwent my first ostomy surgery. After the operation, I endured many complications due to several different infections and the severity of my disease. I was hospitalized for a consecutive 8 months and would face 5 more surgeries within that first year of my diagnosis, all resulting in either a colostomy or ileostomy. Being in the hospital for essentially the first year of having a stoma, I was limited to the ostomy supplies provided by the hospital. Once I made the transition home and was receiving home health care I continued using the same supplies I had been using in the hospital simply because it was all I had ever known.

For the first few years of living with my ostomy I was isolated by the insecurities fueled by daily pouch leaks, chronic skin irritation, and the fear of experiencing a leak or unexpected odor in public. It wasn’t until I got to the point where my peristomal skin was so excoriated and I could no longer keep a pouch on for longer than a few hours that I finally made an appointment to see a WOC nurse.

During my appointment, not only were my skin issues addressed, but my WOC nurse introduced me to a new ostomy appliance and accessories that would work best for my individual stoma and lifestyle. I was given a product catalog which my WOC nurse had marked with tabs on the new products we used that day so I could order them for the upcoming month as well as any samples of other supplies I was interested in trying in the future. That day, I left my appointment feeling comfortable and confident in my new ostomy appliance.

As time went on, I no longer experienced the daily leakage or skin irritation that I had with my previous appliance, and this drastically improved my quality of life. I was no longer worried about odor, or ruining my clothes, I felt more confident in public and was able to participate in the activities I had once restricted myself from doing out of fear that my ostomy appliance would not stay on properly.

As ostomates, we are fortunate that manufacturers continue to improve our ostomy supplies. For the last 13 years that I have been living with my ostomy I have benefited greatly from product innovation and feel confident in the ostomy appliance I wear today.

As an ostomy patient advocate, I am often invited to share my story with nursing students, WOC nurses, as well as other health care professionals. By providing the patient perspective, I encourage them to educate their patients on the supply options available and that a patient’s ostomy appliance plays a huge role in their everyday life.

It’s important to remember that our stomas may change, our bodies may change, and more often than not- our ostomy supplies may change- and that is okay! The most important thing to remember is to seek out the most optimal pouching appliance for you so that you may live the life you love and want to live.  The most important thing to remember is, whatever works best for you and your individual stoma.

Know that you have Ostomy Product Choices

As listed in the UOAA Patient Bill of Rights, ideally before patients are discharged from the hospital they should be informed of the pouching  system that has been prescribed to them as well as have an understanding of the ostomy supply ordering process.   In addition to the pouching system prescribed, patients should be provided with information on the supply choices available to them once they are home.

When in the hospital, your ostomy supplies are included as a part of your treatment of service. To keep costs down, the hospital only has a small selection of ostomy products from a particular manufacturer vendor that they contract with.  As a result patients are initially limited to whatever ostomy supplies the hospital uses. Know that you are not locked into any pouching system and that you have many choices to find the ideal system for your stoma and lifestyle.  (It should be noted that many patients stay with their initial hospital brand and are very satisfied with these supplies.)

Before you leave the hospital be sure to get the product codes for the specific ostomy supplies used while in the hospital. Request that extra ostomy supplies be sent home with you upon discharge to ensure you have enough on-hand until your first order arrives at home, or until your first home nurse visit if you will be receiving home health care. Don’t forget to ask about being enrolled in one of the discharge programs that are sponsored by ostomy manufacturers.

It is completely normal for your stoma size to change in the weeks following surgery, so what was initially prescribed in the hospital might need to be altered.

As always it is strongly encouraged that you work with an ostomy nurse to find the best products to meet your needs and particular situation. Manufacturers’ also have WOC nurses available to discuss any issues or answer your questions if you do not have a WOC nurse/OMS available in your area. Their services are free of charge and they are dedicated to helping you.

When you are ready, feel free to experiment with different manufacturers  or different types of products. It may be helpful to order a product catalog from your medical supplier, so you can see the different products available and what assortment you have to choose from. Also, either you or a family member can call the manufacturer’s toll free 800 number and request product samples, or ask your supplier for a sample.

Know Your Pouching System

In the ostomy world, it is wonderful to know that there are many different styles and types of pouching systems available, and that manufacturers are continually improving their styles and selections.  Manufacturers listen to ostomy nurses and to patients as they seek to improve the lives of ostomates.

It is good to understand the basics of pouching systems and then advance your knowledge as you become familiar with your own system. Once you gain confidence in the terminology, you can begin to explore options for yourself.  Please use this link to learn about the different types of options available. Another excellent resource is here.

Know Supplier Options

The major manufacturers do not sell supplies directly to ostomates. Furthermore, ostomy supplies are rarely available for purchase in chainstore pharmacies such as CVS or Walgreens. Before you begin ordering ostomy supplies, itis important to do your research (read online reviews too) and carefully consider your options when choosing your supplier (Under Medicare these are known as Durable Medical Equipment providers.). Some things to consider when choosing your supplier: affordability (reasonably priced), reliability (on-time delivery) and reputation (quality service).  You should also know the answers to these questions before deciding on your supplier:

  • Do you want to shop at and support a small local medical/surgical supply house or order from the convenience of home through a large mail-order house (aka national online vendor)? There are pros and cons to each but typically national vendors carry a wider range of products, many (but not all) accept Medicare assignment and due to higher volumes can offer lower pricing.
  • Do they accept your health insurance?
  • What are the prices before and after your deductible is met?
  • Do you have to submit the claim for reimbursement to your insurer or do they directly bill the insurance company for you?
  • Do they carry all of the products that you need for your unique pouching application system?
  • Do they stock and keep current with the latest available in ostomy technology and do they suggest new products?
  • If you are on Medicare, do they “accept assignment”?
  • What is the return policy or how do they handle product issues such as defects or incompatibility?
  • Do they only ship in quantities for 30 days (1 month) or also offer 90 day (3 month)?
  • Do they charge shipping?
  • Do they impose their own quantity limits on supplies?
  • How long does it take to receive orders?
  • Do they help rectify insurance denials and work on appeals?
  • Do they work with your doctor to renew your prescription or if you need a change to your supply order?
  • Do they have personalized customer service with helpful reps knowledgeable about ostomy supplies?
  • Do they offer free ostomy nurse consultations to give you tips and guidance?

Tip: Be sure to have a back-up supplier in case your normal provider has a disruption in service or is waiting for your type of supplies on back-order.

Know what Information is Needed to Order Supplies

It’s helpful before you place an order to have all of the information about your pouching application system ready. The most important thing to know when placing an order is the order number for your particular supplies and accessories. The order number will tell the supplier what kind of pouch and accessories that you use. If you are ordering for the first time or switching suppliers,  be sure to know the type of ostomy appliance and any other accessories that you use. Include the pouching system product, size, and product number. Download the UOAA Know Your Ostomy Supplies Checklist tool to have handy.

Know Your Ostomy Supplies checklist

Conclusion

Knowing your current ostomy appliance and accessories, where and how to purchase them, that options are available in product selection, and that you have a choice in all of these decisions helps to make you in control of your ostomy health care.  In addition, utilizing the resources available to you through your ostomy manufacturers, suppliers, and ostomy nurses will help provide the best experience with your supplies.

It is important that you are able to advocate for the right ostomy supplies that work best for you and your individual stoma so that you can feel confident and live well with your ostomy.

Please note: UOAA does not endorse particular products, manufacturers, or suppliers, and is not responsible for any content expressed in sponsor websites.

Ostomy Diet Guidelines After Surgery

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Chances are you will be able to return to your normal diet not too long after your operation. It is good to keep in mind that foods that were good and healthy for your body before your operation are still good for you. A well-balanced diet is recommended for most individuals.

Although your ostomy nurse more than likely will give you tips and advise you on your health and diet, here are some alternative helpful suggestions for maintaining a proper diet after your surgery.

Follow the advice of your surgeon, dietitian, and/or WOC nurse regarding any dietary restrictions right after surgery or on a long-term basis.

Start Small

Ease your way back to proper nutrition with small quantities of food. It is recommended to eat 3 or more times per day in smaller quantities and portions. Try to eat these meals at the same time each day to help regulate bowel movements. Eating more frequently and in smaller quantities will help aid your body’s ability to process food and help with unnecessary gas.

For the first several weeks after your surgery, eating simple and bland soft foods will be easier to digest. Keep in mind that chewing your food well also adds to the ease of digestion – the more broken up it is, the easier it will be to process. Take your time with introducing high-fiber foods back into your diet as these will be harder to digest and can cause blockages. Ileostomates are often encouraged to avoid high-fiber foods to prevent risk of obstruction. Always follow the advice of your surgeon, dietitian, and/or WOC nurse regarding any dietary restrictions right after surgery or on a long-term basis.

If you are trying new foods, it is advised to try them slowly and one at a time. This will help you to have a better understanding of how your body works with the new foods and if any will cause excess gas, constipation, strange odors, or diarrhea. Slowly incorporate them into your diet and make note of how your body responds to them. Remember that every body is different and what affects someone else may not affect you in the same way. This is why it can be helpful to keep a journal or diary of how your body responds to different foods.

Drink Lots of Liquids

It is important to drink lots of liquids with an ostomy. If you have an ileostomy, more specific ileostomy dietary guidelines will be helpful. Dehydration can happen as you lose more fluids daily after an ileostomy, due to the fluid not being reabsorbed into the large intestine. Make sure to hydrate even more on hot and humid days or if you are participating in active sports. (Sports drinks and other high electrolyte drinks can help with this.)
Coffee and tea are fine to drink, but water and juices are still better sources of liquid, so be careful not to use coffee or tea as a substitute for water.

Can I Drink Alcohol With my Ostomy?

Alcohol is fine in moderation, you may want to try one drink (or even a half) and wait and see how it affects your body. Like other carbonated beverages, beer may cause extra gas and uncomfortable bloating but every body is different and what affects one person may not affect you in the same way.

Ostomy Problem Foods

Even though you can still enjoy most of the foods you loved before surgery, there are some foods to be aware of after your ostomy, specifically foods that are hard on digestion and can cause blockages. The following is a list of common foods that can cause problems, as they don’t break down easily:

  • Nuts
  • Seeds
  • Popcorn
  • Dried fruit
  • Mushrooms
  • Raw-crunchy vegetables

Eat these foods in small quantities and be sure to chew them well. If you think you have a food blockage, you should call your doctor or ostomy nurse. Having an ostomy certainly doesn’t mean you have to completely change your diet. By steering clear of a short list of problem foods and making sure to stay hydrated, you can get back to enjoying the foods you love.

To learn more about proper nutrition with an ostomy, visit Coloplast Care online.

Follow the advice of your surgeon, dietitian, and/or ostomy nurse regarding any dietary restrictions right after surgery or on a long-term basis.

Editor’s note: This educational article is from one of our digital sponsors, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

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.

March is Colorectal Cancer Awareness Month

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UOAA Supports the Survivors of Colorectal Cancer

 

Colorectal cancer is the third most common cancer diagnosis among men and women combined in the United States. There is currently no cure, but it’s 90 percent treatable if caught early with a screening. American Cancer Society estimates there will be over 140,000 new cases and over 50,000 deaths this year.

Recent research has confirmed what many have long suspected–more young people are dying of colorectal cancer. Ten percent of all new colorectal cancer patients are under the age of 50 and are too often misdiagnosed.

People with other bowel diseases have an increased risk for colorectal cancer. This includes ulcerative colitis, Crohn’s disease, pre-cancerous polyps, and hereditary syndromes such as familial adenomatous polyposis (FAP) or hereditary non-polyposis colon cancer (HNPCC), or Lynch syndrome.

If you need to have lifesaving ostomy surgery because of colorectal cancer or any other reason, education and peer-support is available from the approximately 300 affiliated support groups of United Ostomy Associations of America. Ostomy patients of all ages and their families, friends and caregivers are welcome. Find a meeting near you today. You are not alone.

UOAA is proud to be a member organization of the National Colorectal Cancer Roundtable (NCCRT). The NCCRT is a collaborative partnership with more than 100 member organizations across the nation, committed to taking action in the screening, prevention, and early detection of colorectal cancer.

Facts About Ostomy Reversals

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Colorectal Cancer: Be informed if you are a candidate for an ostomy reversal 

 

By Joanna Burgess-Stocks, BSN, RN, CWOCN

 

  • Not everyone who has an ostomy as a result of colorectal cancer and other diseases will have the option of having their ostomy reversed.  Some people will need to keep their ostomy for life.

 

  • Your surgeon will determine when an ostomy will be reversed. There are many factors that determine a reversal such as the extent of the disease, a patient’s overall health and treatment process (radiation and chemotherapy).  Most patients with temporary ostomies will have the ostomy for about 3-6 months.

 

  • Surgery for reversal of an ostomy is usually much less involved than the surgery that you had to create the ostomy. So if you are feeling nervous, keep that in mind. A typical hospital course is 3-4 days on average.

 

  • For some patients, interrupting bowel function with a temporary ileostomy increases the chances that you will experience alterations in bowel function after reversal of your stoma. These symptoms can include rectal urgency, frequency, fragmentation of stool and incontinence. It is important that you notify your surgeon as soon as possible with these symptoms. Treatment includes behavioral strategies based on the symptoms and includes dietary modifications, incontinence products, skin care (use of barrier creams such as zinc oxide) and medications such as loperamide. More involved but helpful recommendations are pelvic muscle retraining (PMR) to regain sphincter strength and biofeedback. This therapy is done by a highly trained physical therapist.

 

  • Some physical therapists recommend PMR prior to surgery or radiation to assess muscles and teach strategies for ongoing muscle strengthening that can be carried over after surgery. This helps to address any coordination or existing weakness prior to radiation due to chemo or post-operative recovery. If PMR is recommended after surgery, it is best to wait at least 6 weeks and with the surgeon’s approval.

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