The Snowball Effect of Ostomy Advocacy

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Taking a stand for better ostomy healthcare

By Jeanine Gleba, UOAA Advocacy Manager

United Ostomy Associations of America (UOAA) is an organization that empowers people to get the care they deserve to live life to the fullest. The poor quality of ostomy care received by some in our community limits those lifestyle choices. For people living in the United States with an ostomy or continent diversion healthcare delivery is unequal. A person with an ostomy should be treated as seriously as someone living with diabetes. At hospital discharge, it would not be safe or acceptable for an insulin-dependent diabetic to be incapable of giving themselves an injection, self-managing their diet and blood sugars, and obtaining their supplies. It is not safe or acceptable for anyone living with an ostomy to be discharged without knowing how to prevent dehydration and not have access to care and supplies to live a healthy active life. We can’t let the words “quality healthcare” become meaningless buzzwords for those facing this life-saving/ life-changing surgery. The time has come to take a stand.

To get the ball rolling UOAA recently revised the Ostomy and Continent Diversion Patient Bill of Rights (PBOR), which has become the foundation to stand on, to SPEAK UP. The PBOR states the details of the care people with an ostomy should expect to receive initially and during their lifetime. It calls for healthcare professionals who provide care to people with ostomies, to be educated in the specialty, and to observe the standards of care. It is a guide for patients and families to be active partners in their care, to know what is reasonable to expect so they can collaborate in their care and get the outcomes they deserve.

UOAA has taken the lead to generate this change by promoting the new PBOR and its use. We are excited by the response and support we are receiving and know we can continue to make big strides.

So the little PBOR “snowball” rolling down the hill is gaining momentum and is poised to impact the barriers for people who live with ostomies and continent diversions in America. Be a part of the change, download the PBOR and the Top Ten Ways to use it. Step up and spread the word.

 

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.

Social Security Disability Benefits for Colon Cancer

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If you have been diagnosed with colon cancer and your condition makes it impossible for you to work, you might be eligible to receive Social Security disability benefits.The Social Security Administration (SSA) oversees disability programs that provide benefits to those who are unable to work, but who meet specific criteria.

Social Security Disability Insurance (SSDI) is available to those who meet the medical criteria that have been established to qualify as disabled and also have meet the past work requirements. To qualify for SSDI, you must have worked enough to earn sufficient credits and pay enough taxes. Usually, that is the equivalent of five years full-time work out of the last 10 years.

The claims process is very complicated. In addition to applying for benefits, you must make sure the SSA gets your medical records, documentation of your symptoms, any physician notes, details of your treatments and how they impacted your condition, and proof that your condition is severe enough to impact your daily living and ability to work.

While advances have been made in cancer treatment and you might have a good prognosis, you might be unable to work while undergoing treatments such as chemotherapy or radiation because they can significantly impact your ability to function leaving you nauseated and fatigued.

Before completing an application for Social Security disability, talk with your oncologist. Your oncologist should be familiar with the process and will be able to tell you whether or not he or she believes you would qualify for benefits. Your oncologist can even complete some additional paperwork in support of your claim.

When your oncologist is supportive of your disability application and provides additional documentation, and makes a written statement on your behalf and completes a residual functioning capacity (RFC) form, it can have a significant impact on your disability claim and help you get approved for monthly benefits.

Medical Qualifications and the Blue Book
There are strict guidelines involving the medical qualifications that must be met for an individual to be approved for disability benefits. The SSA uses a medical guide that is called the Blue Book. The Blue Book has different bodily systems listed with different conditions listed for each system. In order to meet the medical criteria, an individual must meet the condition requirements that apply to that condition.

If you are unable to meet those specific criteria, your condition’s symptoms might meet the criteria for specific symptoms or for another condition that is caused by the dominant health problem. Some conditions are approved for benefits solely on diagnosis of a condition but others are more challenging to prove per the SSA guidelines.

Colon cancer applications for disability fall under Section 13.18 of the Blue Book, which is for cancer of the large intestines. To be approved based on the listing, your colon cancer must:

Be a form of Adenocarcinoma AND
returned following treatment
OR
Cannot be removed by surgery
OR
Be squamous cell carcinoma cancer AND affect the anus
AND
returned following surgical removal of tumors or cancer cells
OR
Be a small-cell or oat cell carcinoma cancer
OR
Is any colon cancer that spread past the lymph nodes in the area of the cancer’s original development.

Qualifying for Disability Using an RFC
If your colon cancer doesn’t meet the medical criteria of the Blue Book, you might qualify by using the RFC. This form clearly defines your limitations and how your daily life is impacted. Your physician completes the form to show what you can and cannot do at this point. It clearly states limitations with lifting, reaching, carrying, fingering, stand, sitting, and walking. This completed form will give the disability review team or administrative law judge a clear picture of how your life has been impacted and how you are no able longer to perform work duties.

Applying for Benefits
If you are ready to apply for disability benefits, you can go online to www.SSA.gov and complete the application or call 1-800-772-1213 to schedule an appointment at your nearest SSA office to start the process in person. All forms must be completed in detail and you must have as many of your medical records as possible to support your claim. You can enlist the help of a disability attorney or advocate to help you with your claim and to improve its chances of being successful.

This article was written by the Outreach Team at Disability Benefits Help. They provide information about disability benefits and the application process. To learn more, please visit their website at http://www.disability-benefits-help.org/or by contacting them at help@ssd-help.org.

My ostomy helped my husband and I dance even closer

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Bruce and I were so young when we met at a dance, and for the first two decades of our married lives we never thought about life-altering health issues. And then in 1993, I had my first major bowel obstruction caused by an adhesion from a hysterectomy three months before. Suddenly we heard words like peritonitis, bowel resection and small bowel blockages. That vocabulary grew as the ramifications of 22 abdominal surgeries caused more and more scar tissue and concomitant problems. Finally, three years ago, after agonizing episodes and continuous visits to the emergency room, my surgeon and I agreed that it was time to see if an ileostomy would provide some relief.

I virtually bounced into the room with my ostomy nurse as she prepared to mark me right before my surgery, so hopeful that the tide would finally turn. She then walked us to the operating room prep area, preparing me for what was to come. But nothing prepared me for the way I saw myself the first time in my own full-length mirror. My body had betrayed me and I was now “marked” in a very different way. I looked to my lifelong dance partner with tears in my eyes.

Bruce took me in his arms and told me that not only did he love me, but that he had such respect and admiration for me, and I suppose “Lily,” as I refer to my stoma. My mother was Lillian and she gave me my first life, while Lily gave me my new life, and with that a sense that I can do anything. And the best news is that instead of spending time in the emergency and operating rooms, we have time to dance…even closer than ever before!

By the way, I am very proud to say that I am the president of my Ostomy Support Group in New Jersey, and I never miss an opportunity to welcome new or prospective members…how wonderful to be associated with this new life I so desperately needed, and so very much appreciate!

Herrett Family Story

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By Megan Herrett

Adequately summarizing what our family has gone through over the past almost ten years requires going back to the very beginning.  Our daughter, Maggie was three months old when we realized that she looked a little jaundiced.  Our pediatrician agreed and ran what would be the first of hundreds of tests to determine what was wrong with our baby and why her liver function tests were so elevated.  After being seen by multiple specialists here in Boise for a few months, we were referred to a doctor at Primary Children’s Medical Center in Salt Lake City in November of 2008.

Photo by: Natalie Koziuk Photography (www.nkoziukphotography.com)

When Maggie was about six or seven months old, we noticed that she was starting to scratch quite a bit.  Her arms, feet, and ears were covered in scabs and scratch marks.  This itching was a side-effect of her liver not processing bile correctly – when not processed by the liver, the bile backs up into the bloodstream and circulates back through the body, resulting in an increase number of bile salts in the body.  It is these bile salts in the bloodstream that make an individual with a liver disease very itchy.

At first, we were able to control her itching through several medications but by the time she was 12 months-old, her itching had become unbearable.  At that time, her liver was deteriorating quickly and she was exhibiting some developmental delays as a result of the incessant itching.  In a matter of weeks, she had pulled out all of her hair and she was maxed out on her medication dosages.

We were presented with the option of an ostomy-placing surgery when Maggie was just over one-year-old as an alternative to a liver transplant.  The purpose of her ostomy would be to (1) drain bile from her body to combat the itching, and (2) slow the progression of her disease by giving her liver a much-needed reprieve.

To be honest, I was devastated when I first heard the words, “ostomy bag.”  I imagined a life where Maggie would never wear a bikini or be a cheerleader or be captain of her swim team – all very big concepts when you are talking about a one-year old child.  I imagined her being bullied because she was different.  But, we needed a solution…and we needed to act quickly.

Photo by: Natalie Koziuk Photography (www.nkoziukphotography.com)

Maggie underwent ostomy surgery on October 30, 2009, and we haven’t looked back.  She is now eight-years-old and is thriving health-wise as well as academically.  Additionally, she is also excelling on a competitive gymnastics team.  And although Maggie absolutely beams on the outside, she struggles with confidence because of her ostomy pouch.  She is fiercely private and does not want any of her peers to know.  My husband and I have worked tirelessly to emphasize to her that her pouch is nothing to be ashamed of – after all, it saved her life and she would not be the person she is today without it.

In 2010, we were blessed by the birth of our son, Winston.  We soon discovered that he was plagued with the same disease and would then undergo the same surgery when he was just over one-year-old.  Although this news was devastating at the time, we have come to realize that it was a blessing in disguise.  Both of them have the same liver disease and both wear ostomy pouches – commonalities that they can rely on when the going gets tough.

I can still recall my “aha moment” though – that moment when I realized that we would not be a family that sat idly by and let her pouch be a source of shame or embarrassment for her.  Maggie was probably two years old at the time and we were in the throes of potty-training, where our previous line of attack of onesies and bib overalls to prevent her from yanking her pouch off, were no longer an option.  She was finally in a shirt and a pair of pants…and her ostomy bag was peeking out from the hemline of her shirt as we left a restaurant.  A man entering the restaurant noticed her ostomy pouch and said, “Ewwwww!  What IS that?”  Although my initial reaction was one of anger and dismay, it was then that I realized that working with her would be only one piece of the puzzle – we also needed to work with the community to help educate, support and raise awareness for those like Maggie so that the shame, fear and embarrassment would fade away to empowerment and pride.

It was this “aha moment” that led me to contact the United Ostomy Associations of America in January of 2016 about bringing their Run for Resilience Ostomy 5k to Boise.  My inquiry was met with a resounding “YES!”  We held our inaugural race on Saturday, October 8th and had over 160 people registered for the 5K and Kids’ Mile events.  We even had participants, including ostomates and ostomy nurses, drive in for the race from Spokane, Washington and Lewiston! And Hollister even donated ostomy pouches to include in our race registration bags.  If nothing else, I am hopeful that this year we laid the foundation for many successful years to come and got some ostomy-related dialogue started.  Instead of “ewww,” maybe people will say, “Oh, I know what that is and that saved their life!”

The Boise Ostomy 5k is now in its 4th year! For more information on our Run for Resilience events around the country visit www.ostomy5k.org

How Stephanie Urzi is Raising Awareness

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Stephanie shown here with the proclamations she had declared for Ostomy Awareness Day in 2016. (Left side proclamation is from Governor Chris Christie for the State of New Jersey; Right proclamation is from the NJ Ocean County Board of Chosen Freeholders)

Stephanie shown here with the proclamations she had declared for Ostomy Awareness Day in 2016. (Left side proclamation is from Governor Chris Christie for the State of New Jersey; Right proclamation is from the NJ Ocean County Board of Chosen Freeholders)[/caption]

In 2003, at the age of 29, I was diagnosed with Crohn’s Disease. I remember telling my family that if I ever had to “poop in a bag” to just kill me. But in 2009, at the age of 35, what 29 year old me would have thought to be a worst nightmare ended up being the thing that saved my life.

In November of 2009, a complication of Crohn’s Disease, Toxic MegaColon, almost took my life. Without surgery, there was a 100% chance I would die. With surgery there was still only a 20% chance I’d survive, but at least there was a chance, so a subtotal colectomy with ileostomy was performed, and 4 days later, I was brought out of a coma.

So grateful to be alive, it was then that I realized that “pooping in a bag” was not what I once thought it was. In fact, having an ostomy was life saving! But the thoughts I had regarding ostomies are not mine alone. For too long, there has been a stigma and much misinformation surrounding ostomies and ostomy surgery.

Because of this, some have chosen suffering and death instead of an ostomy and life. Therefore, raising ostomy awareness is important to me because LIFE is important to me. I want people to know that having an ostomy is just another way to live life to the fullest.

My favorite saying regarding an Ostomy/Stoma is this: You can make it your friend or you can make it your enemy. If you make it your enemy you will have a hard time surviving. But if you make it your friend, not only can you survive, you can thrive.

Love your Ostomy and embrace life!

Annie Gammell’s Story

My colostomy story began when, at age 56, I discovered that I had late-stage colorectal cancer.  A large tumor was discovered during my first colonoscopy, and it was cancerous.  Thus began a long journey that eventually led to colostomy surgery on my 64th birthday.  After the initial surgery to remove the tumor and part of my colon and rectum, I had radiation and two rounds of chemotherapy.  The radiation permanently damaged my intestines and caused a bowel blockage that required more surgery, followed by years of chronic diarrhea and abdominal pain.  I finally found a surgeon in my home state who cut out some of the intestinal damage and gave me the surgery that infinitely improved my quality of life.

Before the colostomy, I was on a very restricted diet, but I can now eat many raw foods, including what I had missed the most for six years—salads!  It has taken me a while to adapt to changing and wearing the pouch, and I have had some “accidents” along the way.  These are usually caused by my skin allergy to adhesives, which causes the skin barrier to fail when I have had a significant amount of stoma output.  Still, I usually have enough time to get to the bathroom before the leak causes a major problem.  I have, however, received some valuable tips on handling and preventing problems online, because there are no ostomy nurses or support groups near where I live.  I have also shared information on how to reduce skin allergy problems and passed on what has worked and not worked for me.

My background:  I am originally from Baton Rouge, LA, and have a Master of Journalism degree from Louisiana State University.  I am a retired Army officer, having spent 20 years on active duty, mostly as a Public Affairs Officer.  I served two overseas tours in Germany and met my husband when we were both Army majors stationed at the Presidio of San Francisco.  My cancer was diagnosed in 2007, while I was working as a civilian for the US Army Cadet Command at Fort Monroe, VA.  My colostomy surgery was performed by Dr. David Beck at Ochsner Medical Center in New Orleans.  He is also retired from the Air Force.

Tricia Hottenstein’s Story

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Saying that my ostomy gave me my life back is not an understatement. I don’t think I have ever felt better in my entire life. I was diagnosed with Crohn’s when I was 15 and in the 12 years I suffered before having surgery, I never once achieved full remission. I missed more school than I attended, had to take a medical withdrawal from college, and struggled to find and keep a job. I was in so much pain and having so many symptoms that I couldn’t leave the house for entire days at a time.

After having my son I finally agreed to undergo ileostomy surgery after I had refused it for years. I was concerned about having a bag on my belly and the effect it’d have on my life. When I had a bunch of questions I referenced UOAA’s resources including the website and Facebook page especially when finding a bag that wouldn’t leak or cause skin issues. It has been incredibly helpful to see what products others are using. There’s always a great tip or trick within the community.

The truth is since my surgery I never felt more alive. I’m not afraid of road trips or adventures and I finally have the health and strength to do whatever I want to do. My entire outlook on life changed for the better and instead of being embarrassed about my symptoms, I am now confident and happy and proud to tell the world I’m an ostomate! I go to ostomy support groups and will always share my story and be available for questions. Sometimes it’s good just to know there is someone else like you.

Ray Elvey’s Story

I had ulcerative colitis that was unresponsive to any treatments including remicade infusions. In January of 2006 I had ostomy surgery. My first comment was “It is so quiet down there.”

After three horrible years my life was given back to me. I am now disease free and colon cancer is no longer a worry. My ostomy surgery has allowed me to have a more rewarding relationship with my wife and family. Having an ostomy has not stopped me from enjoying activities such as cycling that I participated in prior to surgery.  I still ride whenever I can.

As soon as I was physically able one of the first things I did was join a local UOAA affiliated support group. The support group was a lifesaver for me. When I first joined I was having terrible skin problems and there seemed no solution. The support group facilitator made one suggestion and my skin problem was completely resolved!  

As a result of my ostomy I have discovered a new passion in my life that I probably never would have done otherwise. I am now a freelance writer on ostomy topics that are of interest and concern to ostomates and their families and friends.  My articles appear in our support group newsletter and the Phoenix magazine. I want people who are facing this surgery to know that their quality of life can be restored through ostomy or continent diversion surgery. It truly is lemons into lemonade.

Swim Confidently with an Ostomy

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After healing from ostomy surgery, people of all ages and types enjoy swimming, surfing scuba diving or just relaxing in a hot tub. We understand the anxiety from worrying about leaks can keep some people out of the pool. There are no ostomy specific restrictions to swimming in public places. “Swimming has made me stronger both physically and emotionally. It is a great outlet and has made me even healthier. I feel and look more beautiful” says Lynn Wolfson of Florida. Lynn has two ostomies and swims in triathlons. Here are some solutions to common concerns.

I’m afraid that my pouch will leak or my wafer will loosen while I’m in the water.

Remember, your pouching system is resistant to water and with a proper fit, it is designed not to leak. If you have output concerns, eat a few hours before swimming. A good habit is to empty your pouch before taking a dip. If you are hesitant about how your wafer will hold, take a practice soak in your bathtub. It is best to avoid applying a new skin barrier/wafer or pouch right before swimming. The WOCN Society recommends allowing 12 hours for proper adhesion. Using waterproof tape or water-specific barrier strips are not necessary for most, but can provide peace of mind. There are a wide variety of ostomy supplies on the market for swimming and you should be able to find a solution that works best for you. If your pouch has a vent, use the provided sticker over the air hole so that the filter remains effective.

What can I wear or do to help conceal my pouch and keep it secure?

Wearing a patterned or darker color is less transparent than a light-colored swim garment. Options for women include patterned and boyleg one-piece suits. For a two-piece suit, consider a mix and match of tankini tops, high-waisted bottoms or boy shorts. You can also look for a suit with a concealing ruffle or skirt. Men often favor a higher cut waist for trunks, or suits with longer legs. Stretch fabric undergarments and swim or surf shirts also provide support. Ostomy bands and wraps are also commonly used. On the beach or poolside don’t be surprised to know that some ostomates are comfortable with simply wearing the swimsuit of their choice- with swim fabric pouch covers or just an opaque pouch. There is also swimwear and accessories specifically made for ostomates by a variety of manufacturers.

What do I do if I am approached by pool personnel concerned that my ostomy is an open wound or believe ostomy pouches are not allowed in pools?

The best approach here is to stay calm and try to educate. However, unless you or another person tell pool personnel, no one should know you have an ostomy. Contact UOAA Advocacy Manager, Jeanine Gleba if this is a recurring issue at your swim location. The Americans with Disabilities Act ensures your right to pool access and most disagreements can be solved through education before exploring any legal recourse. Some scuba diving operations also incorrectly list having an ostomy as an exclusion on pre-dive paperwork. Contacting PADI (800) 729-7234 can help educate them that there is no reason to avoid diving if you have an ostomy pouch.

Meet with a WOC nurse for questions about what supplies may work best for you and stop by your local UOAA Affiliated Support Group or visit our discussion board at ostomy.org to ask what your peers do to feel confident and secure while swimming.

Get yourself a bathing suit and start swimming!