Know What’s In Your Medical Record

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Expect More – Take Control of Your Health Care 

Part 4 in Series

By Susan Mueller, BSN, RN, CWOCN and UOAA Advocacy Committee

“Details matter. It’s worth getting it right.” ~ Steve Jobs

The Buck Stops Here

Since UOAA started the advocacy campaign we have been stressing that YOU are your own best advocate.  This may be hard to believe since the whole business of insurance is so overwhelming that it feels like a David and Goliath story.  Like anything else, once you understand the rules of the game it makes it a lot easier. You actually have a bigger part in the game then you may know.  Often consumers of medical care, patients, people like you, think that everyone knows their story. You are asked a million questions every time you pass through the doorway of any hospital or doctor’s office and everyone is writing things down.  How many times do you have to tell your story? Answer: as many times as it takes to get the results you want. Unfortunately, the goal of great communication among the players in the healthcare game has not been reached, and all these computers do not talk to each other as much as you think. So what this means is that you have to make sure that everyone knows the important parts of your story and that they understand what you need.

So it goes like this, the people who pay the bills want to make sure that the money that is paid is according to their rules; that is, for a medical reason.  So the people who are asking to be paid have to explain that the service or supply is medically necessary. For example, the company that sends out your supplies (ostomy supply distributor) has to be able to say that you need the supplies because you have an ostomy, what kind of ostomy you have, why you have an ostomy, and when you had your surgery.  Then if you have Medicare they have to ask you questions to make sure someone else is not giving you supplies (like a home care agency or nursing home or hospital) because Medicare doesn’t want to pay double. The doctor or physician’s assistant or nurse practitioner has to report some of the same things plus show in their notes (your medical record) they have spoken to you about your ostomy and what you need for your care.  This is where you come in; you have to make sure your doctor knows what you need and why, even though your doctor may know very little about ostomies.

Get More Involved with your Doctor in Your Healthcare

A good suggestion is to visit your healthcare provider (doctor, nurse practitioner, physician assistant) at least once a year and provide a supply checklist which includes all the supplies you need (with the product numbers), and what type of ostomy you have. At this visit discuss what has happened in the last year; for example, you had a yeast infection around your stoma, you went to the emergency room for an obstruction or dehydration, you developed a hernia around your stoma, you gained or lost weight and had to change your type of ostomy product… This is the kind of information that needs to be in your medical record.  Your medical care provider may then give you a referral to an ostomy nurse at a wound or ostomy clinic, or a dermatologist or may just write it down in your record so when the insurance company wants to know why you now need a belt or a different kind of pouch or a greater quantity of pouches, they will know why.

Medicare has done research to figure out how many supplies an “average” person with an ostomy usually needs. If what you need is different, then your doctor must include information on your medical condition to support the need for the type and quantity of items ordered.  If you are working with a nurse who is specially educated about ostomies, the nurse may also be able to help you by writing down why you need different supplies than the average ostomate and give that information to your doctor to put in your medical record. This information in your medical record can then be given to your ostomy supply company and or your insurance. It is then the responsibility, under Medicare guidelines, of your supply company to get this information from your medical provider.  

An example of a special situation that would require additional supplies might be that your skin is irritated from frequent leakage of your pouching system due to your stoma being flush to the skin or below the skin. You require frequent pouch changes until your skin can heal. Any request for supplies more than the average amount is marked for review.  Just because a person “wants” more is not a good enough reason and those requests for supplies (claims) will be denied. You might have to have detailed notes in your medical record about why you need to use a convex wafer or pouch (such as because you have a stoma which is below skin level, or the stoma opening is at skin level).

Medicare has specific guidelines for the coverage of ostomy supplies, including that they be used exclusively for colostomy, ileostomy or urostomy management.  Ostomy pouches being used to manage fistula or wounds are not covered under Medicare guidelines.

Be aware that suppliers will not receive payment from Medicare for the items that are ordered if your physician did not provide the proper detailed information from your medical records when it is requested or if your detailed written order (prescription) is missing information like a signature. Furthermore, not providing this information may result in you, the patient, having to pay for the item yourself.  Note that your doctor’s cooperation is a legal requirement as outlined in the Social Security Act, the law governing Medicare.

To help you better prepare for your next office visit, please use this new checklist resource.

Pay Attention to the Details

The details are important, sometimes a date is wrong, the type of ostomy is wrong, the code for your diagnosis has a number missing…your insurance was not recorded or was recorded incorrectly, the doctor didn’t sign the note. Those things are minor and require a little detective work.  So if you have a request (claim) denied you may have to be a detective. You can speak with someone at the company who provides your supplies (ostomy supply distributor) and ask them to help you understand why your request (claim) was denied. Maybe together you can discover that a number was off or incomplete information was submitted.  Another example of an ostomate taking control of their healthcare is to not assume that your supplier has the proper documentation, but to ensure that your file at your supplier does include all of the necessary information. Ask your supplier for a copy of this documentation including prescriptions.

The same thing may be true with your doctor’s office, a request for supplies may have been denied because the information needed was not given to the insurance company or supply company. So then you need to speak with someone to discover what was missing. Sometimes the problem can be found, corrected and then the supply company can resubmit with positive results.

If you receive a denial, you have the right to appeal. The appeal usually has a time limit attached so follow the instructions for an appeal and respond that you want to appeal the denial.  If you have non-Medicare insurance you may be able to speak with someone at the insurance company about your denial to figure out why your request was denied as part of the appeal process. You may also contact your insurance customer service and request a case manager to assist with your supply denial.

If you have Medicare, for assistance you can contact your local representative from the  Beneficiary of Family Centered Care – Quality Improvement Organization (BFCC-QIO) or call 1-800-MEDICARE to help you understand the appeal process and determine what is still missing from your record. Your supply company may also be able to help you.

Do You Know What’s in Your Medical Records?

You have a right to request a copy. In 1996 the Health Information Portability and Accountability Act (HIPPA) was passed. It is the law that protects patients’ health information from being shared with only those who have a need to know. It also states that patients are allowed access to their health records.  Your medical record is not just your doctor’s office records, it includes hospital, nursing home, or home health agency (HHA) records, and records from other healthcare professionals including, but not limited to, nurses, therapists, and social workers. Here is a great video example of advocating for yourself and knowing what’s in your record.

Each state has its own laws about what is required to get copies of your medical records. Check with your medical provider/facility for their policy on obtaining your medical records.

Conclusion

To avoid claim denials, long appeal processes, costs to you, or the possibility of not receiving your ostomy supplies, you need to make sure that:

  1. Your supplier is submitting correct information and up to date medical records to your insurance company (or Medicare); and
  2. Your physician keeps up-to-date medical records about your health, your ostomy and your supplies in your medical record.

Just recently ostomy advocate Megan, The Front Butt YouTuber, tweeted, “Currently going through some of my medical records. Found several pieces of misinformation, which I cleared up in visits and it was marked incorrectly. Yet, they are still present on my record. Again, patients are NOT being listened to.” (9/4/18 Twitter) Kudos to her for taking an active role in her healthcare, and going through her medical records. Self-advocacy is ongoing and no doubt she will be bringing this up again until it is CORRECT!

Remember that you have the right to change physicians and the right to change your ostomy supply company if they are not working with you.

It’s time to take control of your health. You deserve high-quality care.

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.

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!  

Tips for a Successful Recovery after Ostomy Surgery

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By Diana Gallagher, MS, RN, CWOCN, CFCN – Facilitator for the NWA Ostomy Support Group

updated 11/3/2022

For many, ostomy surgery is lifesaving but their initial feelings on living life with an ostomy are negative. For individuals with years of unresolved incontinence or inflammatory bowel disease, however, life after surgery is frequently viewed as a positive improvement. For them, an ostomy is the promise of a return to a normal life.

As you prepare for surgery, or recover from emergency surgery, the following are important tips to help you transition into your new life and embrace living with an ostomy.

Select a surgeon with valuable experience in the type of surgery that you are facing. General surgeons as well as specialty surgeons can perform ostomy surgery. Specialty surgeons are those who have completed additional education, training, and fellowships within the specialty. These surgeons will be identified as Colorectal or Urology Surgeons. You can find a local physician through the website for the American Society of Colorectal Surgeons or by contacting the American Urological Association.

See an Ostomy Nurse. BEFORE surgery, your surgeon may refer you to a specialty nurse, like a Certified Wound Ostomy and Continence Nurse (CWOCN). If not, you will need to find a specialty nurse. This nurse will help ease your transition into living with an ostomy. Although education may be provided during your hospital stay it can be difficult to focus and remember because of anesthesia, surgical pain and stress. Your ostomy specialist will provide comprehensive education including practice pouch changes before surgery. In addition, he/she will identify and mark the best location for your ostomy. This is important because during surgery it is difficult for your surgeon to know where the waistband of your pants sits, where creases or irregularities exist and other special considerations to consider when selecting that optimal site.

Attend a United Ostomy Associations of America (UOAA) affiliated support group (ASG) meeting in your community if possible. You may think that you do not need a support group or feel that you are the type of person who does not feel comfortable in a group setting. Put those feelings aside; listening in the beginning is a good start. Join your local group, even if you don’t initially find someone your age with a similar story, there is a lot to learn. UOAA affiliated support groups are truly one of the BEST places to obtain the necessary education, helpful hints, support, and resources and many groups offer online meetings. Don’t feel that you are alone.

For more details search this website for trusted ostomy information including a New Ostomy Patient Guide, specifics on the major ostomy types, ileostomy, colostomy, urostomy and resources on topics such as diet and nutrition, sexuality emotional concerns, IBD and ostomy and much more.

FAQs

 

Determine which supplies will work best for you. Learn about the different ostomy pouching systems. In the beginning, you will most likely receive sample products from a number of companies. It is helpful to keep the 2 piece products from each manufacturer separated; wafers from one company will not necessarily snap onto a pouch from another company. The sampling program will help you try a variety of products to learn which ones work best for you.

Order your regular supplies. Once you know what you like best, an order can be placed through a distributor. There are countless distributors to choose from and depending on insurance, your supplies can be delivered monthly or every three months. The first time that you order, it is logical to order a month’s worth of supplies. As your expertise develops, you may fine-tune your list. Insurance normally pays 80% of supplies that are medically appropriate. If you have a secondary plan, the remaining 20% may be covered. Check for a list of the established limits for each product. Reorder supplies so that you are never without the supplies that you need.

Select a place to keep your ostomy supplies organized. Many people keep their basic supplies in a bathroom drawer, others buy a plastic organizer with several drawers that can be moved about. Excess supplies can be stored in a closet but regardless of where you choose to keep supplies, it is best to avoid temperature extremes and high levels of humidity.

Be prepared. In addition to the extra supplies that you keep on hand at home, always keep a small pouch with all the supplies necessary for a complete change with you. Like your other supplies, these should be kept away from temperature extremes and humidity. Hopefully, you will rarely need to make an unplanned change, but being prepared, makes most ostomates feel secure and confident. If you anticipate an occasional return to the hospital, keep a bag packed with your preferred supplies. The hospital may not have the brands that work best for you.

Promptly consult your ostomy specialist for any problems. This might be a decrease in normal wear time, a change in your stoma, or a problem with your peristomal skin. A good practice for all is to hydrate properly to avoid complications.

Recover from surgery and LIVE life to the fullest. Having an ostomy does not change who you are or what you are able to do. After recovery, work to strengthen your abdominal muscles to help prevent hernia risk and enjoy all your old activities including swimming. Every October UOAA holds the Run for Resilience Ostomy 5k where people of all ages prove living with an ostomy does not need to be limiting.

Advocate for yourself. You will find that not everyone is knowledgeable about ostomies. Educate others when possible but always be willing to advocate for yourself and others. You can also help to advocate on the national level by supporting UOAA’s advocacy program and taking part in events like Ostomy Awareness Day held on the first Saturday in October. UOAA works toward a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically, and psychologically.

Share your experience and tell your story. Your story has the power to help others as they begin their journey. Connect with others in person or online and offer to help the next person who has this life-saving surgery.

 

For updates on the latest ostomy resources,blogs, events and advocacy sign-up for UOAA’s monthly E-Newsletter or become a part of the official UOAA community with a national membership. For more information contact United Ostomy Associations of America at  info@ostomy.org or 1-800-826-0826.

Back to Work with an Ostomy

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From the board room to construction, to long shifts in a hospital, people with living with an ostomy (colostomy, ileostomy, urostomy, ect.) work every job imaginable.  Embracing a “new normal” in life after ostomy surgery is key to living an active life, and that daily norm means going back to work.

According to the American Society of Colon and Rectal Surgeons once a person has recovered from surgery your ostomy should not limit your return to work. When you return depends on your individual recovery, ease of pouch management and how physical your job is (due to the increased risk of hernia).

Whether to tell your employer or co-workers is a personal choice depending on your unique work situation, but some feel it comes in handy if you require frequent breaks or other accommodations. Remember your co-workers will likely not realize you have an ostomy unless you tell them. With some preparation you’ll soon be confident in the workplace, and for many, feeling in better health than before surgery.

Here are a few tips from the UOAA Facebook community and Advocacy Network.

  1. Be Prepared:  In the case of a possible leak have a complete change of your ostomy supplies as well as a change of clothes you can bring to the bathroom. “Pack in a backpack, zippered tote, or small duffle bag that you can store in your desk drawer or locker” –Jane Ashley-publishing/author
  2. Know Your Rights: You have legal rights under the American Disabilities Act prohibiting employment-based discrimination. Workplace complaints to UOAA are rare but it can still occur. “My coworkers all knew, especially of the trials and tribulations pre-op. But still, there was hostility and harassment at times.” Jacque- Retired Government.
  3. Dispose/Empty Your Pouch Properly: Investigate the best restroom/changing facilities to empty or change your pouch. Consider the use of pouch or ostomy type deodorants. “My purse contains a 1-ounce bottle of Poo-Pourri, a Tide pen, a lubricating deodorant sachet, and baby wipes.” Margie, Academia.
  4. Find the Best Clothing for Your Job: Consider loose clothing if sitting for long hours or a stoma belt if you have an active job with lots of bending. A skin barrier may be helpful if you perspire on the job. “I wear a hernia belt”- Megan-Nursing
  5. Don’t Stress Stoma Noise: If your stoma decides to speak up at the next meeting relax, you may be the only one who notices “All bodies make sounds” Penny- Construction
  6. Hydrate: “Stay on top of your fluid intake. Don’t get distracted and have it result in an ER visit.” Heather Brigstock-Nursing
  7. Find Support: Know that you are not alone. UOAA has about 300 affiliated support groups around the United States that offeradvice, information and support.

Wish some preparation and patience you’ll soon be confident in the workplace, and for many, feeling in better health than before surgery.