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A patient who did not know what to expect walks you through the process (with photos)

By AnneMarie Finn

According to UOAA information on this website, a urostomy is “a surgically created opening in the abdominal wall through which urine passes. A urostomy may be performed when the bladder is either not functioning or has to be removed. There are several different types of surgeries, but the most common are ileal conduit and colonic conduit. Reasons for surgery include bladder cancer, spinal cord injuries, malfunction such as chronic infection of the bladder and birth defects such as spina bifida.” Great definition, but what does it mean? When I was told I would need a radical cystectomy, leading to an ileal conduit I had no clue. The following is my experience.

Because of bladder cancer, my bladder needed to be removed and a new way to pass urine created. Due to the location of the tumor, my urethra was also removed so my surgeon and I settled on an ileal conduit, a conventional urostomy. It is called ileal conduit because a piece of the ileum, or small bowel, is used to make a passage for urine to go from the kidneys and ureters out of the body. The other end is brought out through a hole in the abdomen where urine exits through a stoma (more on that shortly). It is known as an incontinent urinary diversion because you cannot control the urine. As a result, a collection bag or pouch hangs from your abdomen to catch the urine. The pouch is not visible as it is worn under your clothes. Still not clear? It wasn’t for me either.

A couple of days before surgery, I met with an ostomy nurse at the hospital where I would be receiving my surgery. She marked where the stoma would be placed. She saw how I wore my pants. She had me sit, stand, lay down, and bend over, She drew a mark with a marker about 2.5 inches to the right and 3 inches down from my navel and covered it with a waterproof dressing. This would guide the surgeon as to the optimal spot to place the stoma. The surgeon had the ultimate call on where the stoma went, depending on the surgery itself. I also met with a nurse for a pre-op appointment. They went through the typical exam and then explained the ERAS protocol to me. ERAS, Enhanced Recovery After Surgery, is used at my hospital for radical cystectomies. They no longer use a bowel prep. You drink a high carbohydrate drink in the hours prior to your surgery. They get you up walking and feed you by the day after surgery. The goal is to keep your bowels working. This reduces the length of hospital stay and the number of complications.

This is major surgery. It is considered one of the most complex cancer surgeries performed. My surgery took 7 hours. They removed the bladder, urethra, uterus, cervix, fallopian tubes, an ovary, and some lymph nodes. When I woke up, I had a bag, a large incision with more than 30 staples and a Jackson Pratt (JP) drain on my abdomen. I also had intermittent pneumatic compression (IPC) devices on my legs, my spa legs. Blood clots are a common side effect of a radical cystectomy. Because of that, I also received daily prophylaxis blood thinner shots in my belly for 30 days. I was not in a great deal of pain which was easily managed with Tylenol. I was definitely weak, but otherwise ok. I went home in 4 days, on my own with my urostomy.

The stoma is the badge of the urostomy. My stoma is about one inch in diameter. It is pretty round, It sticks out. It sometimes moves in and out. You can’t feel it. It has been described as looking like a rosebud. It is red. This is where the urine exits the body. You have no control over it. Sometimes it will also expel mucus. Some people name them. I did.
Rudolph, my red, round stoma

You use a urine collection pouch, or bag, to catch the urine. The hospital will send you home with some so you do not need to have them on hand before you get home. There are many different brands. In fact, until I found what worked best for me, I tried most of them. My pouch is about 8 inches long, 6-7 inches wide and has a 1-2 inch closable spout on the bottom. It also is a deep convex bag as my stoma does not stick out very far and it helps protect my skin. I prefer the clear bag so I can see the stoma and center it when I put it on. There are both one and two-piece bags. I have used both. One-piece pouches have the bag and a skin barrier attached. The skin barrier has adhesive, also called a flange or wafer, that sticks to your skin. There is a hole that goes over the stoma. Some are pre-cut, some are not. If not, you must cut a hole slightly bigger than your stoma before putting it on. There are also two-piece systems. The bags are separate from the skin barrier. They are attached by a Tupperware-like seal. You can leave the skin barrier on and take off the pouch.

Front and back of 1 piece, deep convex pouch

I change my pouch every 3 days. I like to remove the old pouch and take a shower with it off. I feel so free. To remove, I use an adhesive removal spray and wipes to clean the skin. I shower and wash the area around the stoma with soap and dandruff shampoo, which contains Zinc. Some people wash with a vinegar and water combo. If I change without showering, I just use plain water to rinse. After showering, I use a hairdryer on the lowest setting to dry the skin around the stoma so the wafer sticks to it. Drying your skin is important. I have some skin issues so I also use a skin barrier protective sheet, that I cut a hole to match the opening of the wafer, and a cohesive seal.

Protective Sheet with hole cut out and Cohesive Seal

Some people use powders, paste, barrier wipes, etc. I do not. It took a lot of trial and error to find what worked best for me. You need to find what works for you. One of the best ways to do this is to work with an ostomy nurse. They can help you navigate ordering and finding the best system for you.
At night, I use the urinary drainage bag they sent me home with from the hospital. For me, it works the best. There are several brands of night bags and even jugs. I put it on the floor next to my bed inside of a small wastebasket. This has been key as the drain has opened (or been left open) and the wastebasket collected the urine, preventing a rug catastrophe. I am a very active sleeper and I am not really hindered too much from my bag. I am able to sleep on my back, sides, and stomach. Don’t be afraid to sleep. People add their own tubing and tube placement strategies. Use whatever works for you. I also highly recommend a waterproof mattress pad. Mattresses are expensive. I also use the night drainage bag on long car trips. I don’t have to stop and use those disgusting public toilets. I even used it during the Avengers finale. I was probably the only person in the theater who did not have to get up to use the facilities during the movie! People were actually jealous.

Night Drainage Pouch

I honestly can’t even feel my pouch. I empty it every 1-2 hours, depending on how much I drink. Sometimes there is a “ghost” feeling where my bladder used to be making it feel like I have to pee. Ah, the good old days. It is actually a weird sensation drinking a lot and not feeling like I have to go. The bag is not noticeable under my clothes. I really do wear what I wore before surgery: jeans, sheath dresses, shorts, and bathing suits. I am still sexually active. Having gone through this experience with my wonderful caregiver, my husband, has brought us closer. Most importantly, I am cancer-free.

The ostomy community is understandably very concerned about how the COVID-19 outbreak is affecting their daily lives, health, support networks, and access to ostomy supplies.

In this time of great uncertainty, UOAA recommends all individuals consult with their own primary care physicians with questions concerning their risk factor or if they exhibit any symptoms. Please follow the Center for Disease Control (CDC) website for actual up to date information. We recognize that many people living with an ostomy or continent diversion are older people and those with chronic disease and are therefore at higher risk of developing serious illness. Please also see CDC guidelines for people at risk

UOAA is also hearing from many Affiliated Support Groups who have prudently decided to cancel their upcoming meetings. Members should expect that their meetings will be canceled for the foreseeable future. Affiliated Support Groups are each independently run and members should contact their local leaders if they have any questions about their meetings. Community guidelines are also available from the CDC to assist leaders in deciding steps they should take to address public health concerns.  

UOAA reached out to the major ostomy manufacturers to see if the outbreak is currently impacting their production or supply chain. As of March 4, 2020 none of the manufacturers reported any issues in their operations as a result of the COVID-19 outbreak. Read our previous blog post for statements from individual manufacturers on this topic. Check with your distributor to see if there are any shipping delays due to increased demand of all goods at this time. 

If you develop a fever, cough and have difficulty breathing always contact your healthcare provider. They will determine if you are a candidate for a COVID-19 test. Medicare and private insurance should cover a test to see if you have coronavirus if requested from a physician. Additionally, Medicare is offering telemedicine options so people can stay home as much as possible during this crisis. Contact your private insurer to discover any additional benefits they may be offering at this time. For frequently asked questions and facts about this virus follow updates from the CDC on the latest COVID-19 guidelines.

UOAA will update this blog post with any information that may affect our community. 

Updated: 4/10/20

The coronavirus is spreading around the world and some in the ostomy community are concerned if it will affect their access to ostomy supplies. UOAA reached out to the major ostomy manufacturers to see if the outbreak is currently impacting their production or supply chain. As of April 3, 2020 none of the manufacturers are currently reporting any issues in their operations as a result of the COVID-19 outbreak.

As with any natural disaster personal preparation is key and there are many steps you can take now to be prepared for any unexpected impact in your life or community. For those who become ill or have a compromised immune system, always contact your physician with any concerns. If you are on Medicare Part B (Medical Insurance) and become ill it covers a test to see if you have Coronavirus. For frequently asked questions and facts about this virus follow updates from the CDC on the latest COVID-19 guidelines.

These are the latest statements and information from leading ostomy product companies, they will be updated as needed.

11 Health

At 11 Health we understand that the challenges of COVID-19 extend beyond the needs of patients who are suffering from the virus. Our ostomy patients tell us that hospitals are cancelling their appointments and people are struggling to access their doctors and nurses; a big issue for people suffering from a chronic illness. That’s why we have launched our free 12 week remote patient monitoring Alfred SmartCare program to support ostomates using our patient coaches, tele-health nurses and dedicated app to provide a pro-active and preventative wellness program. We encourage you to visit us @ www.11health.com

With regard to access to supplies, we continue to safely manufacture and distribute. We currently have stocks in house of all Alfred SmartCare products and moving forward we do not anticipate any issues with smartbag supply.

 Hollister Incorporated Statement on the 2019 Novel Coronavirus

In response to the global health emergency concerning the spread of the 2019 Novel Coronavirus (COVID-19), Hollister Incorporated has taken steps to protect our Associates, and seeks to ensure that our customers experience no disruption to the supply of their products. Hollister is diligently cooperating with our suppliers across the globe to identify any potential impacts the coronavirus (COVID-19) may have on our suppliers as well as our own operations.
At this time, based on the information received to date, we do not anticipate an impact to our ability to supply or to our other business operations.
Hollister Incorporated continues to monitor this public health threat and considers the guidance provided by the World Health Organization, the US and European Centers for Disease Control and other sources in managing our overall ongoing response to this public health emergency.
We reassure you that we are taking appropriate measures to help ensure our customers, our Associates and our operations are cared for during this critical time. We continue to monitor the situation closely.
For additional inquiries, please contact corporate.communications@hollister.com.

3/24/20 Secure Start Services A Message from the Hollister Incorporated Family – COVID-19

Coloplast Statement

4/3/20

We hope you are doing well. We realize at this time, many of you may be dealing with lots of changes in your personal or family lives related to the COVID-19 outbreak. How can Coloplast® Care help you in this time of uncertainty? We aim to be the connection that builds your confidence in living with your intimate healthcare condition.
At this time, more than ever, assistance from Coloplast® Care may be more crucial as people stay home. The Coloplast Care team is still here for you, and we have extended our hours to six days a week to better support you.
Our Care Advisors are available by phone from 7 am to 7 pm Central Time, Monday – Friday and additionally 9 am to 1 pm Central Time on Saturdays
Here’s how to reach the Ostomy team

Call: 1-877-858-2656
E-mail: Care-us@Coloplast.com

We are here to support you with wellness information, product access information, and ostomy product samples. We also have some great educational resources for you available online, 24 x 7.

We have a number of educational resources available for you at our website, and encourage you to visit our resources: www.ostomy.coloplastcare.us

Concerns about access to supplies

We continue to safely manufacture and distribute our products. Currently, the COVID-19 outbreak is not impacting our ability to supply our ostomy and continence products, so we encourage you to continue to order your supplies as you regularly would.

At a time when many are concerned about receiving their medical supplies, Care Advisors can help coordinate product access by helping match you with product dealers who meet your insurance needs. If you are having trouble reaching your dealer or getting your medical supplies, please call us and we will ensure that you can continue to receive the products you need.

To read more about the initiatives that we have put in place globally and for updates related to the coronavirus, please visit our website. Let Coloplast Care be your reliable source of information for your intimate healthcare needs.

Kind regards,
Your Coloplast® team

ConvaTec Statement

At ConvaTec, we understand that the COVID-19 (Coronavirus) situation is impacting everyone. We’re doing our part to be socially responsible while still ensuring that our customers can contact us and receive the support they need.

To keep employees and customers safe, we’ve adjusted our work arrangements, including work from home where possible, to maintain social distancing.  As always, our me+ team of Wound, Ostomy and Continence Certified Nurses and product specialists are available, by phone or email, to answer any questions or concerns you may have.

If you have any questions or concerns, please contact our ConvaTec me+™ Support Team at 1-800-422-8811 (M-F, 8:30AM – 7:00 PM Eastern Time) or email cic@convatec.com.

ConvaTec Ostomy Care Global Impact
Our Ostomy products, whether produced by ConvaTec or in partnership with outsourced partners, are not manufactured in countries with high levels of reported cases of Coronavirus, this includes China. The situation is changing daily and therefore, ConvaTec has a dedicated team tasked with continually reviewing the situation, maintaining close collaboration with our suppliers and logistics partners, and communicating changes as the situation evolves.

Nu-Hope Statement

It is our recommendation that ostomates keep at least 1 box of spare pouches at all times. (This recommendation is independent of the COVID-19 outbreak). We do not recommend stockpiling supplies as this will stress the supply chain and likely cause delays and disruptions to your regular orders. Nu-Hope offers ½ boxes for sale through certain dealers.

Safe n Simple Statement

Safe n Simple would like to assure all of the ostomy community that we are well stocked on supplies and do not foresee any issues or concerns with being able to provide products needed during the Coronavirus outbreak.

Imagine if there was a place where over forty ostomy product manufacturers, accessory makers, distributors, lifestyle experts, and related support organizations could gather with ostomy patients from around the world? Well, UOAA’s 7th National Conference Exhibit Hall is that place, and everyone is invited. It will be open August 8 and 9, 2019 at the Philadelphia 201 Hotel in the heart of Philadelphia, Pennsylvania.

People return to UOAA’s biennial national conferences not only because of the lifelong friendships, education, and social events but also because of the exhibit hall. It is a fun one-stop experience to ask questions about your favorite supplies or discover what is the latest and greatest in the world of ostomy care. Attendees have the chance to sign-up for sample products and talk one-on-one with representatives of all the major and specialty ostomy product manufacturers. Visitors often find the passionate owners and inventors of unique ostomy products on hand to introduce you to their products.

 

UOAA is proud to be able to provide this space for our community to gather.  The conference runs Aug. 6-10, but If you can only come to our conference for one day you’ll want to consider registering for the exhibit hall days Thursday and Friday. There is even a free box lunch Friday for all those registered attendees who enter the exhibit hall. You may want to consider staying longer, however, to take advantage of the free stoma clinic, expert educational session and surgery specific meet-ups. And don’t miss social events such as the Roaring 20s Casino Night and Music Thursday and the Saturday night fashion show, desserts, and dancing. Be sure to stop by UOAA’s table where you can sign an important petition for the Ostomy and Continent Diversion Patient Bill of Rights and learn about all the upcoming events such as Ostomy Awareness Day and the Run for Resilience Ostomy 5k.

 

Here is a list of all the businesses and organizations exhibiting this August. Like UOAA, they are dedicated to improving the quality of life of people living with an ostomy. 

 

11 Health and Technologies Inc.
www.11Health.com • 657-266-0570

11 Health helps people living with medical bags by combining peer-to-peer support with unique patented SmartBags that collect patient generated data for preventative care. 11 Health thinks and acts differently from all established medical bag companies because we see the patient as a patient – not an end user.

ASCRS – Colon/Rectal Surgeons
www.fascrs.org • 847-290-9184

You are invited to visit the ASCRS Booth and receive information regarding services ASCRS can provide, including patient referrals and patient education brochures. The scope of colon and rectal surgery includes the small bowel, colon, rectum and anal areas.

Avadim Health, Inc.
www.theraworxprotect.com • 877-677-2723

Avadim Health Inc. is the Bionome Life Science company. Avadim’s flagship product Theraworx® Protect is a topical solution that supports the skin’s outer most layer, the stratum corneum, while remaining Non-Toxic and Safe.

B Braun Medical
www.bbraunusa.com • 800-227-2862

B. Braun Medical Inc. develops, manufactures, and markets innovative medical products and offers ostomy products including Flexima® 3S two-piece appliance with a unique guiding system and a High Output System. The myosto™ resource offers ostomates the ability to request product samples and educational resources on the website. Visit www.bbraunusa.com and www.myosto-mylife.com

Byram Healthcare
www.byramhealthcare.com • 800-227-2862

Byram is the leading service and solutions provider of disposable medical supplies delivered directly to the home while conveniently billing insurance plans. We provide convenience, affordability and choice™ to make a positive difference in the lives of the people we serve.

Calmoseptine, Inc.
www.calmoseptine.com • 714-840-3405

Calmospetine® Ointment protects and helps heal skin irritations from moisture such as urinary and fecal incontinence. It is also effective for irritations from perspiration, wound drainage, fecal and vaginal fistulas and feeding tube site leakage. Calmoseptine® temporarily relieves discomfort and itching. Free samples at our booth!

Cancer Support Community
www.cancersupportphiladelphia.org

Cancer Support Community is a leader in cancer support, and is the largest cancer support organization in the world that provides 100% free services and programs for individuals and families impacted by cancer. The Community serves those with cancer, who have a family member or friend with cancer and who have lost a loved one to cancer.

Celebration Ostomy Support Belt 
www.celebrationostomysupportbelt.com • 413-539-7704

Our ostomy Celebration Belt systems are designed to protect your dignity while allowing you to lead an active life. Learn how to measure for a correct fit, get wear and care information, and order your belt with confidence.

Colo-Majic Enterprises
www.colomajic.com • 866-611-6028

Colo-Majic® Flushable Liners are designed to be inserted into a two piece closed end pouch system to collect colostomy/ileostomy output. Liners will keep your pouch clean allowing for reuse and makes output disposal quick and easy.

Coloplast
www.coloplast.us • 888-726-7872

Coloplast develops products and services that make life easier for people with very personal and private medical conditions. Working closely with the people who use our products, we create solutions that are sensitive to their special needs. Our business includes ostomy care, interventional urology, continence care, wound & skin care.

ConvaTec
www.convatec.com • 800-422-8811

At ConvaTec, we exist to improve the lives of the people we touch and are committed to helping people living with an ostomy live the life they want with more confidence and freedom. Our me+ program gives you the support, insights and products you need. For more information, visit convatec.com.

Crohn’s & Colitis Foundation 
www.crohnscolitisfoundation.org  888-694-8872

The Crohn’s & Colitis Foundation is dedicated to finding cures for Crohn’s Disease and ulcerative colitis, and to improving the quality of life of children and adults affected by these diseases. The Foundation is at the forefront of research in inflammatory bowel diseases in addition to educating, supporting, and empowering patients and caregivers.

Edgepark
ww.edgepark.com • 800-321-0591

Edgepark is a leading provider of home-delivered, disposable medical products. We specialize in ostomy, wound care, urological, incontinence, diabetes and more, offer comprehensive insurance options and provide free nationwide delivery. To learn how we can help meet your supply needs, please call 800-321-0591 or visit www.edgepark.com.

Friends of Ostomates Worldwide
www.fowusa.org • 502-909-6669 • info@fowusa.org

Friends of Ostomates Worldwide-USA is a volunteer-run, non-profit organization that collects donated ostomy supplies from individuals and organizations in the United States and sends them and educational materials at no cost to ostomates in need around the world.

Girls With Guts
www.girlswithguts.org • info@girlswithguts.org

The vision of Girls With Guts is to establish a national support network that assists women with IBD and/or ostomies in their search for community, acceptance, and empowerment. This rapidly growing sisterhood helps to ensure that no woman will ever feel isolated by her disease.

Hollister Incorporated
www.hollister.com • 888-740-8999

At Hollister Incorporated, we are dedicated to delivering the highest standard of quality in medical products and services, and each member of the Hollister team is committed to making a difference in the lives of people who use our products and services.

Hy-Tape Int. 
www.hytape.com • 800-248-0101

Hy-Tape’s latex-free, waterproof, zinc oxide-based adhesive is soothing to delicate skin, and removes without compromising skin integrity. Our tape is perfect for extended ostomy wearing time, adhering securely so the end user can resume normal activities such as walking, exercising, bathing and swimming without worry of detachment.

KEM Enterprises, Inc.
www.kemonline.com • 616-676-0213

KEM Enterprises, Inc. manufactures the Osto-EZ-Vent.® The Osto-EZ-Vent® is the unique venting device designed for any Ostomy pouch, which allows quick, discreet release of air pressure. Invented by an Ostomate, the OEV™ gives the wearer complete control and confidence to lead an active life. Medicare code A4366. Visit us at kemOnline.com.

Marlen Manufacturing
www.marlenmfg.com • 216-292-7060

Since 1952, Marlen has been a leading innovator in ostomy care. Offering an extensive line of one-piece and two-piece systems for Ileostomies, Colostomies and Urostomies, Marlen has always strived to provide the highest quality products while meeting the comfort and security needs of our customers. Visit our website at www.marlenmfg.com

McKesson Patient Care Solutions
www.mpcs.mckesson.com • 855-404-6727

From doctor to doorstep, McKesson Patient Care Solutions provides healthcare that fits into your everyday life. With online support to answer all your questions, a team of customer service Reps to help you choose the right supplies, and fast, convenient shipping right to your door.

No You Cant’cer Foundation
www.noyoucantcerfoundation.org • 609-464-4647

The No You Cant’cer Foundation is a nonprofit organization working to dispel the negative stigmas surrounding ostomy bags and colorectal cancer while inspiring through song. By nationally distributing informational pamphlets and creating her awareness ribbon necklaces, cancer survivor and ostomate Melissa Marshall aims to help everyone say No You Cant’cer.

Nu-Hope Labs
www.nu-hope.com • 800-899-5017

Nu-Hope manufactures ostomy devices, accessories, belts, barriers and adhesives. We specialize in custom molded pouches and custom ostomy/hernia belts. Other highlights are our oval convex pouches, and stoma wafer hole cutters. Check out the Nu-Comfort belt and new for 2019, our moldable extended wear barrier. Don’t forget the Fun Run/Walk!

Oley Foundation
www.oley.org • 518-262-5079

The Oley Foundation is a non-profit organization providing information and support to those sustaining themselves on home infused and/or tube fed nutrition. Outcome data demonstrates that those connected to Oley have better outcome: significantly higher quality of life, less reactive depression, and a lower incidence of catheter-related sepsis.

Ostomy Canada Society
www.ostomycanada.ca • 888-969-9698

Ostomy Canada Society is a non-profit volunteer organization dedicated to all people with an ostomy and their families, helping them to live life to the fullest through support, education, collaboration and advocacy. www.ostomycanada.ca

Parthenon Co., Inc.
www.parthenoninc.com • 800-453-8898

Family owned and operated for over 50 years. The Parthenon Company is a manufacturer and discount retailer specializing in ostomy supplies servicing customers throughout the United States.

Philadelphia Ostomy Association
www.philaost.org

The Philadelphia Ostomy Association was established in 1949 as the Colostomy Ileostomy Rehabilitation Association. As time went on and Urostomy surgery was developed, we changed our name to the Philadelphia Ostomy Association to support all types of ostomates.

Pouch Place
www.pouchplace.com • 865-531-1285

Nurse owned and managed ostomy care and supplies. For more than 27 years the Pouch Place has offered a complete selection of ostomy, wound care and incontinence supplies treating each patient’s needs with thoughtful and respectful care from two store front locations and an online store serving patients nationwide.

Pull-thru Network, Inc.
www.pullthrunetwork.org • 309-262-0786

Pull-thru Network, Inc (PTN) is a volunteer-based non-profit organization dedicated to providing information, education, support and advocacy for families, children, teens and adults who are living with the challenges of congenital anorectal, colorectal, and/or urogenital disorders and any of the associated diagnoses.

Quality Life Association, Inc.
www.qla-ostomy.org • 662-801-5461

The Quality Life Association, Inc. (QLA) is a non-profit nationwide association aimed at meeting the special needs of the continent ostomate and to educate others on the latest advances in ostomy options.

Safe n Simple
www.sns-medical.com • 844-767-6334

Safe n simple is an innovator that develops and markets a full line of high quality, cost-effective ostomy accessory products. The patented Peri-Stoma Cleanser and Adhesive Remover wipes are their most popular product. Now offering Security Hernia/Ostomy Support Belts.

Sanitary Ostomy Systems, Inc.
www.sanitaryostomysystem.com • 805-441-6708

Discover Our Exclusive Pouch-Emptying Systems For Use At Home And Everywhere Else. THE SOS KIT: Compresses pouch contents into a detachable, disposable collection bag. The perfect reusable solution for ostomates & caregivers. THE TRAVELER KIT: Empties your pouch anytime, anywhere – even in your car! Completely disposable, discreet and easy.

Schena Ostomy Technologies, Inc.
www.ostomyezclean.com • 239-263-9957

The revolutionary EZ-Clean Pouch system can be cleaned in less than 3 minutes. Water under pressure is dispersed via a manifold inside the pouch to provide thorough, hygenic cleansing of the pouch and stoma while sitting on the toilet. See details on how to normalize life with an ostomy online at: www.ostomyezclean.com.

Simply Beautiful
www.simplybeautifulstore.com • 304-771-1773

Wraps and Lingerie that empower women and preteens to feel more confident and reveal your true beauty while thriving with an ostomy.

Stealth Belt Inc.
www.stealthbelt.com • 800-237-4491

A Stealth Belt is an ostomy support belt that is specially designed to hold an ostomy appliance securely and discreetly. A Stealth Belt may be worn 24/7 to provide comfort and give you privacy. Stealth Belt’s great design features include, light weight fabric, a zippered pouch compartment, and a range of adjustability for ease of sizing.

Stomagienics, Inc.
www.stomagienics.com • 225-939-1460

Stomagienics Inc., was created based on an extraordinary situation involving a family member who, after having ostomy surgery, solved a plaguing issue that occurs during the ostomy pouch replacement process. We use many of his original design principles to create a revolutionary new product that will change the lives of ostomates worldwide.

Surviving to Thriving
www.elaineorourke.com/ostomyprograms • 978-281-6126

Are you struggling to live a fulfilling life with your ostomy? Elaine O’Rourke, creator of the “Surviving to Thriving: Overcoming Ostomy Challenges Program, has had an ostomy since 2005 and understands the struggles are real! Stop by to claim your gift, 3 Simple Ways to Eliminate Fears About Your Ostomy.

Takeda
www.takeda.com • 877-825-3327

Takeda is a global, values-based, R&D-driven biopharmaceutical leader headquartered in Japan, committed to bringing Better Health and a Brighter Future to patients by translating science into highly-innovative medicines. Takeda focuses its R&D efforts on four therapeutic areas: Oncology, Gastroenterology (GI), Neuroscience and Rare Diseases. We also make targeted R&D investments in Plasma-Derived Therapies and Vaccines.

Trio Ostomy Care USA  

www.trioostomycare.us • 863-421-9400

Trio Ostomy USA, has an over-riding commitment to patient care with improvements to quality of life being at the heart of our business. We ensure that our products reach healthcare providers at an affordable level, offering the benefits of the most advanced silicone technology for all.

United Ostomy Associations of America (UOAA) Inc.
www.ostomy.org • 800-826-0826
United Ostomy Associations of America provides educational material, resources, support and advocacy for those who have or will have ostomy surgery, their family, caregivers and medical professionals. Stop by our booth to view our resources and show your support of the Ostomy and Continent Diversion Patient Bill of Rights by signing the online petition.

Youth Rally
www.youthrally.org • info@youthrally.org
More than 30 years after inception, the Youth Rally continues to provide an environment for young people to meet others who live with conditions of the bowel and bladder. Lasting friendships are formed, in a short 5 nights, in an atmosphere that promotes self-confidence and independence.

 

Click Here to learn more and register for UOAA’s 7th National Conference Aug. 6-10, 2019 in Philadelphia, PA.

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.

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.

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 Pouching System (Appliance) Checklist tool to have handy.

 

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.