About 4 years ago, I awoke to the alarm on my cell phone, and for some reason it seemed to be extra loud this time. I had probably only slept for about 2 hours, but still, I anxiously jumped out of bed with a nervous sense of excitement. Today was the day that would forever change the path of my life. Today was the day that I was headed to the Mayo Clinic Hospital in Phoenix Arizona to have an extremely risky abdominal cancer surgery with no real guarantees that I would even survive it. I had no idea that today was the day that would begin the toughest fight of my life.

You see, at the age of 51, I was diagnosed with “Pseudomyxoma Peritonei secondary to Well-Differentiated Mucinous Adenocarcinoma of the Appendix”. Ultimately this means that years ago, a cluster of cancerous cells had formed in my appendix which caused it to eventually explode. Subsequent to this painful event, the cancerous cells spread themselves throughout my abdominal cavity attaching and growing on the exterior of several organs and producing a considerable amount of ascites fluid. My surgeon explained to me that my condition was extremely rare, and risky with maybe a 30% chance of survival. He agreed to perform the surgery, but looked me in the eyes and said only if I will agree to do my part and be willing to fight for my life!

After the twelve and a half hour long surgery, I woke up to my family hovering over me, and praying for strength and healing. As I became more aware of where I was, I began to notice the multiple tubes, cords and electronic devices attached to me. The doctors and nurses were constantly coming in to check on me, making adjustments to my I.V., monitoring my pain level, and recording my vital signs. A little later, I was paid a visit by my surgeon and he introduced me to someone referred to as my ostomy nurse. I didn’t even realize that I had this bag attached to my abdomen until she asked for my permission to inspect it. Prior to the surgery, I remember my surgeon explaining to me and my wife that an ostomy bag was a possibility, but this was the least of my concerns and I didn’t really comprehend what that actually meant. Along with a couple of other organs, my colon was completely removed and I now had to embrace life with an ileostomy.

Robert at the Arizona Run for Resilience Ostomy 5k, “the sense of family, acceptance and understanding at this event provided much needed encouragement.”

 

For the first year, I dealt with it as best as I could, but in the back of my mind I believed that soon, I would be able to have the reversal surgery and no longer have to deal with an ostomy. As I was approaching the one year anniversary of becoming an ostomate, on Facebook I came in contact with a beautiful soul by the name of Jearlean Taylor. You have probably heard of her, and know that she has been a double ostomate since early childhood. We chatted for a while, and after a detailed discussion, I was convinced that having an ostomy wasn’t so bad. A few days later, I sat down with my surgeon to discuss the possibility of the reversal surgery, and we concluded that in my case, I would actually enjoy a better quality of life by keeping my ileostomy, which now has been named Paco.

Now that the decision had been made to keep Paco, I began to research ostomies and discovered the United Ostomy Associations of America. Come to find out, they were having an ostomy conference in California the very next month, so I

Robert at UOAA’s National Conference where he discovered he was welcomed into the “ostomy family.”

booked it, and made my way to Cali. Not really knowing what to expect, I was pleasantly surprised and almost overwhelmed with gratitude as I was so warmly embraced into the ostomate family. I learned so much about ostomies, and the stories shared by other ostomates really inspired me and gave me the courage to now tell my story. Last year, I finally felt I was physically strong enough to participate by walking in the Run For Resilience Ostomy 5K in Mesa, Arizona. Again, the sense of family, acceptance and understanding at this event provided much-needed encouragement.

 

I am inspired to inspire others by publicly sharing my journey of conquering cancer and living with an ostomy. Through music, speaking and near the completion of my first book, I am telling it all so that others will realize that life experiences will ultimately make you, and not break you. I have come to the realization that my ileostomy has not only changed my way of life but has actually contributed to saving my life. I am forever grateful…

“It’s easy to say what you’re willing to die for, but there is freedom in knowing what you’re willing to live for”.

–Robert Harrion

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Support Made the Difference Before Reversal

I was halfway through a 10-hour drive home to Lancaster County PA from Dayton, where I’d just finished a Relay For Life, when I felt the first pains in my lower left side. Thinking they were just cramps, I shrugged them off and kept driving. The cramps persisted though, so I popped a few Naproxen and tried to put my mind on something else.

Eventually I decided to stop at a hotel and sleep it off, then worry about it later. Whatever it was, I couldn’t do anything about it now, I’d call my doctor when I got home. A hospital “just happened” to be next to the hotel I chose, after bypassing 4 others.

When I checked in, though, I was so cramped up that I couldn’t even stand straight. I was sweating, weak, and had a bout of diarrhea. I had always been pretty healthy, so I had no frame of reference for what was going on with me. I figured I had a flu bug or maybe a cyst. I tried eating, taking a shower, more Naproxen, but nothing helped.

Finally at 1:23 am I felt a compulsion to go to the ER. I had no idea what was going on with me but I knew I needed to be checked out. After being checked in, I had a CT scan. The surgeon came back to me himself and announced that I had a ruptured colon and that I was going to have to go into emergency surgery. He could either sew it up or I’d have to have a colostomy.

I had never had issues with my colon and thought colostomies were for “old people”. Alone, still 4 hours from home, I had no clue what I was in for.

I woke up hours later in a drugged daze. The surgeon came in to say that he’d had to do the colostomy. “The hole was so big I could put my thumb through it!” he said in amazement. I looked down at my left side to see this new, strange thing called a colostomy bag attached to me. How was I going to live with this?

At home, I connected with several different sources that I couldn’t have done without. A home health care nurse who showed me how to use and live with the bag, a WOC nurse who educated me, an online support group with fellow ostomates, who were always there for tips or to hear me vent.

I thought my life would be suppressed. But I was still able to swim, jog, bike, go out to eat, travel, and all the others things I did before.

I was fortunate to have a reversal three months later. I recovered quickly with no further health issues. I have a scar, but it reminds me to be thankful for the surgeon, nurses, and support group people who helped me along the way-I could not have done it without them.

Learn more about Jennifer’s story before and after her emergency surgery on her blog.

I was told if I didn’t have the surgery when I did, my Crohn’s disease would have killed me. Surgery made a drastic change in my life for the better. Now I will be around for my wife and kids.

I had a promising career in the United States Army, but that all quickly changed. In 2014 I was deployed to Afghanistan. During my deployment, I noticed something wasn’t right and started having a lot of stomach pains and other symptoms. At the time I didn’t think much about it. I was focused on the mission during my deployment. I always put my soldier’s needs before mine. So nine months went by and I came home in 2015. Still having these symptoms I was asked to do another deployment to Iraq. I took the deployment for another nine months. Towards the end of my deployment, I was in a lot of pain. Once I returned back home I finally saw a medical doctor. After several tests, I was diagnosed with Crohn’s disease. Later I started treatments, but nothing was working. As a result, I was medically discharged from the military in August 2016; whereupon, I continued my treatments back home in Dayton, Ohio. In December 2016, I was still in so much pain that I went to the emergency room for testing. When the doctor came back, he told me I needed to have emergency surgery. That December I had my first surgery and I went home with a permanent ostomy. It was a difficult transition back to civilian life and even more challenging now adapting to life with an ostomy.

I really struggled in the beginning. I felt alone trying to figure things out. I went from being in the best shape of my life from being in the military to gaining weight and being depressed. I even shut my family out. I didn’t think support would benefit me because in my mind they were civilians and not prior military service members. One day I woke up and realized this doesn’t have to be this way and turned it around. I did reach out to a few support groups on Facebook looking for advice and how people deal with having an ostomy pouch. I realized it wasn’t about the military anymore, but all of the support people out there are willing to give. My wife is my biggest supporter!

I’ve read so many articles about Crohn’s and ostomy pouches, but I haven’t really felt like anyone was affected in the military as much. Now I want to share my story. I reached out to UOAA because I hope to advocate for all military and their families that struggle through this. I want to be the one who is there for a fellow service member that when they find out they have this disease that they are not alone and even though you loved and enjoyed the military, there’s still a bright future outside of the military.

Even after two years I still struggle with the thought of having a “bag” and some pain, but I am able to stay active now and recently went back to doing what I love – getting fit, and being outdoors and hunting and fishing. I feel having an ostomy was a slight setback, but it was not the end. There are far worse things in life. So if me having to do this to save my life and be able to enjoy it, then I find that as my motivation to keep going. Most importantly, I’m no longer out with the constant bathroom trips and horrible pain that left me not being able to love life and spend time with my wife and kids.

I am Alan Thompson, a New Jersey native who moved with my wife, Vita, to Florida in 2015. I recently joined the Daytona area chapter of the United Ostomy Associations of America; however, I am not a new ostomate, I had ileostomy surgery when I was 30 years old in 1986. I suffered from ulcerative colitis for about four years prior to the surgery and thankfully I never needed serious follow-up medical attention. I view the ileostomy surgery as a positive event in my life that ultimately motivated me to have a successful career in Federal Law Enforcement.

My first symptoms of ulcerative colitis occurred in 1982, when I was a clerk for the Postal Service in Phillipsburg, NJ. The symptoms significantly worsened in 1984 resulting in hospital stays that included hyperalimentation. I was even initially quarantined at a rural New Jersey hospital. The local gastroenterologist did not have a handle on my illness, but thankfully my Mom shared with me an advertisement in Parade magazine that described ulcerative colitis (UC) which matched all my symptoms. I was given Prednisone and Azulfidine to manage the UC. At first the medications worked but ultimately the UC symptoms kept coming back at shorter and more intense intervals. By 1986, I realized that surgery was my only hope. We had two small children and I had nearly exhausted my sick leave with the Postal Service. Vita and my parents, Madeline and Jessie Thompson, were very supportive through this entire ordeal.

Alan Thompson with wife Vita on Capitol Hill in 2017.

I met with Dr. Robert Riether in Allentown, PA. We first tried ileoanal anastomosis surgery in May 1986 at Lehigh Valley Hospital. But by September my condition worsened, and it became clear that an ileostomy was needed. During this tumultuous time, Vita became pregnant with our third child. My surgery was performed on September 19, 1986. I am eternally thankful for Dr. Riether who unfortunately, passed away at a young age in 2006.

Overcoming UC motivated me to reach new heights with my career. I eventually became Superintendent of Postal Operations in Flemington, New Jersey. In 1989, I took a test to become a Postal Inspector, which is a federal law enforcement position that enforces criminal laws related to the U.S. Mail. I passed the test and started the arduous process to become an Inspector which included an intense assessment interview, background checks and a medical physical. At the time, the maximum age for starting a career as a Federal law enforcement agent was 35, which meant that I needed to complete this process and commence a three to four-month training regimen in Potomac, Maryland by March of 1991. Unfortunately, due to budget reasons the training classes were suspended and I “aged out”.
In 1992, the maximum age for commencing a Federal Law Enforcement changed to 37 years old. I now had up to March 1993 to get into a Postal Inspector class. I had another round of background checks and another physical. The local postal doctors knew I had an ileostomy but found me to be in good shape to become an Inspector. I made it! I was slated to start at the Inspection Service Training Academy three days before my 37th Birthday.

To celebrate my potential advancement and spend time together as a family before I left, Vita and I took the kids on a long ride to the Camden, NJ Aquarium on February 26th. We travelled through a snowstorm and came back to a message on the answering machine. A doctor in Washington DC rejected my application because of my ileostomy. I was devastated. I made several calls and wrote letters to the postal hierarchy with little or no response from them. I heard that other Federal Law Enforcement Agency doctors were consulted, and no one had been known to have previously entered Federal Law Enforcement training with an ostomy. Fortunately, I still had my job as a Postal Supervisor.

Over the next several months we fought and secured another physical from a gastroenterologist with Vita’s advocacy on my behalf, the doctor approved of my candidacy to become an Inspector. I believe strongly that letters that we sent to New Jersey Senators Bill Bradley and Frank Lautenberg helped my cause. Our daughter Jessica, at age 11, also wrote a letter to Congresswoman Marge Roukema urging her office to intercede. That letter really turned things around and ultimately, I was granted an exception to the Federal law enforcement maximum age requirement and I was accepted in the next training class that commenced in September of 1993.

Under the heading of things happen for a reason, I learned after my initial rejection that my Mom had been diagnosed with colon cancer in February of 1993. She and my Dad didn’t want to tell me because I was headed to the training academy. My Mom ended up with a colostomy which, with my Dad’s hands on help, she lived with until she passed away in 2006. She always said that my having an ileostomy gave her the courage to handle a colostomy. Obviously, Mom inspired me too!

I passed the training academy and commenced a career in New York City as a Postal Inspector. My assignment was mail theft investigations which required surveillances during all times of the day. Firearms and Defensive Tactics training and annual physicals were also requirements. I also participated in the initial Anthrax investigation and assisted the Secret Service on a protection detail for President Clinton. Having an ileostomy certainly presented some difficulties but it never interfered in my daily activities that included investigating and arresting thieves and testifying on behalf of my agency. Ultimately, I became a Team Leader in New Jersey. In 2006 I transferred over to the USPS Office of Inspector General and continued investigating and supervising mail theft investigations in New Jersey and New York.

At the time of my mandatory retirement in September 2013, I was an Assistant Special Agent in Charge for the last five and a half years of my career. All told I had 33 years with the Postal Service. At no point after I was accepted into the training class in September 1993 until my retirement 20 years later did anyone mention my ileostomy. I am sure that upper management must have known about it, but I let my work speak for the opportunity that was given to me in 1993.

One tip that I can offer is that I quickly recognized foods to avoid and realized early on that weight control was essential in managing my ileostomy. I currently work out at least six days a week riding a bike and doing some weight training. I recently took up golf with low expectations and I love meeting those low expectations. Now as a retiree in Florida, I am grateful that I did not accept the rejection and instead pushed and advocated for the opportunity to demonstrate that my ostomy would not interfere with a career in law enforcement.

Expect More – Take Control of Your Health Care 

Part 6 in Series

 

By Joanna Burgess-Stocks and Keagan Lynggard-Hysell

 

There are many different emotions you may experience as a new ostomate, and it is important to understand that physical and emotional healing after surgery may follow different timelines. We understand that everyone copes with emotions differently. Some people struggle for a long time. Whether you would like to seek individual support from a social worker, therapist, or other medical professional or prefer support from a peer mentor or by attending a local support group; understanding the emotional impact of ostomy surgery and receiving the appropriate support is an important part of taking control of your health care.

 

Witnessing the Emotional Impact- a WOC Nurse’s Perspective

“Hello, my name is Joanna.  I am here today because I am your ostomy nurse”.  

I have repeated that sentence hundreds of times over the last 12 years. I am in the unique situation in that I am meeting you at a pivotal moment in your life, heading in a direction you might never have imagined–facing ostomy surgery. During that initial encounter I am sometimes met with a blank stare, a stunned look of fear and dread, or with complete relief.  Whatever the reaction, I am the person that is there to help you navigate the world of living with an ostomy. I take great care during that initial visit to meet you where you are emotionally, knowing that this is a sensitive topic for you, someone who most likely is not used to talking about the way you go to the bathroom. Soon, however, I will share with you that I too am an ostomate (person living with an ostomy) and have been one for 53 years since the age of three!  As I leave you that first day, I finally see a glimmer in your eyes–hope! A sign that maybe this journey is possible and that you are not alone.

As an ostomy nurse, I have had the opportunity to meet patients in a variety of settings and have worked with hundreds of patients facing ostomy surgery whether it be from cancer, bowel or bladder diseases or from emergent situations.  No matter the reason, the anticipation of ostomy surgery is a step into the unknown and can compound the anger, sadness, and fear about the medical condition that caused you to need an ostomy. As you face these multitudes of feelings and adjust to life with an ostomy, know that you can take control of what may feel like an uncontrollable situation.

 

Facing the Emotional Impact- a Patient’s Perspective

“Good morning Keagan, today a special nurse is going to come and teach you how to care for your ostomy and help with your first bag change.”

A special nurse?–I thought to myself. Why do I need a special nurse to show me how to take care of my pouch? I had so many questions, a multitude of emotions, and I was feeling overwhelmed. So many things were out of my control, my recent diagnosis of Crohn’s disease, my hospitalization, my surgery, and now the responsibility of caring for my ostomy. I felt helpless and was eager for some independence in managing my body.

My WOC nurse entered the room and introduced herself with a smile. As she sat beside my bed listening to my fears and frustrations she explained how we were going to change my pouch. In an attempt to gain some independence, I told her that I wanted to take the pouch off myself and as I lifted the edge of the barrier just enough to see the edge of my stoma and the few black stitches poking through my skin– I lost it. I didn’t want to do it anymore, any of it. I didn’t want my insides on the outside, I was scared of my own body. My WOC nurse stepped right in with encouragement and support and a perspective I will never forget. She said she understood that what I was going through felt unmanageable but that caring for my stoma was something that would allow me to be self-sufficient, and that changing my pouch would give me independence in caring for my health. Since my very first pouch change, I have been encouraged to shift my perspective and to be proactive in the areas of my care where I can take control.

 

Seeking Individual Support

It is important for you to seek the resources needed to understand and work through the emotional impact related to ostomy surgery. It can be very helpful to have someone affirm your emotional concerns as you adapt to life with an ostomy. Most will find their path to acceptance as they physically begin to feel better and become comfortable with the care of their ostomy. If you are struggling with depression, how to tell others about your ostomy, or any part of the adaptation process (including the lack of will to learn self-care), seeking support through counseling can help you address these struggles. A licensed professional has the skills to help you create the life “tools” you need for navigating the unknown, including fears of introducing your ostomy into a new or existing relationship, addressing body image challenges, or understanding the grieving process. You can speak with your physician for a referral if needed.

 

Finding Support in Others

The fear of the unknown can often be soothed by learning from those who have gone through a similar experience. UOAA has approximately 300 Affiliated Support Groups throughout the United States, providing the opportunity for you to connect with others within your community who have also undergone ostomy surgery. To find a local support group near you, visit UOAA Support Group Finder. If you would like to connect with others but prefer to do so through an online format or from the comfort of your own home you can join a Virtual Support Group. Another way to gain support is through an ostomy mentor. Ostomate Lois Fink describes in her book Courage Takes Guts; Lessons Learned From A Lost Colon, meeting her mentor for the first time at a restaurant. The mentor was wearing a very slim dress and Lois felt perplexed, trying to figure out where she was hiding her ostomy pouch!  Lois learned that she could be the same fashionista that she always was while wearing an ostomy pouch and it helped her face her ostomy surgery with more strength and confidence.

To learn how to connect with an ostomy mentor, many UOAA Affiliated Support Groups have certified visitor programs or you can contact UOAA for a list of current ASG visitor programs at 1-800-826-0826.  

 

Our Hope for New and Struggling Ostomates

It is the hope of all of us at UOAA that one day you will be able to look at your stoma and see it as something that was life-altering and maybe even life-changing, but it was also life-giving. Be patient with yourself as you journey through both the physical and emotional healing process and be sure to utilize the available resources to support you every step of the way.

 

Crucial Role of Emotional Support – Infographic

Emotional Support Infographic

 

Additional Information & Support

UOAA has developed several tools to help you navigate through various informational topics at your own pace. To help better understand what ideally should happen before and after ostomy surgery we have developed the Ostomy and Continent Diversion Patient Bill of Rights. To learn some of the common “ostomy lingo” you can refer to our blog Know Your Ostomy and Know Your Ostomy Pouching System and Supplies. Complete the accompanying checklists and keep them handy for your ongoing ostomy care.

As a new ostomy patient, you may have concerns or face many unknowns. UOAA provides resources to answer these frequent concerns and questions to best equip you in living with an ostomy. Here are a few of the ostomy educational resources available at ostomy.org:

 

The Benefits of Giving Back In Spite of Your Health Challenges

By Lynn Wolfson

We all want to feel like valuable members of our community. However, many times we are held back by personal issues, lack of time or just a complete lack of knowledge on how to contribute to help others. For those who have not had the experience, they do not know the emotional elation that one gets by helping others.

Let me tell you a little about myself. I was born with a genetic disease that prevents my digestive track from functioning as it should. Consequently, I am fed through my heart (Total Parental Nutrition), I defecate into a pouch attached to my abdomen and I catheterize to urinate four times a day. All of this medical equipment did take me years to accept and learn to take care of on my own. However, once I learned, accepted and had my independence back, I wanted to give back to my community.

I started by participating in my local UOAA affiliated ostomy support group. I attended national ostomy conferences and met many people who also had ostomies. I then joined the Digestive Disease National Coalition in Washington, DC and learned how to lobby for Bills which are needed for the digestive disease community on Capitol Hill. There I met many people active in the digestive disease community and joined The Oley Foundation.

Lynn Wolfson is assisted by her service dog Zev as she travels for advocacy and conferences around the country. Lynn has battled Hirshprung’s disease since childhood.

After several years of attending national conferences with the United Ostomy Associations of America, The Oley Foundation, and The Digestive Disease National Coalition, I decided to create my own support group. I named it: The Weston Ostomy Tube Feeding Group. The group meets monthly from August to May and discusses many important issues regarding people with ostomies and enteral/parental patients.

Then I decided I wanted to help my local community. I started going to the Jewish Community Center and learning how to knit hats for cancer patients. I had not knitted since I was a little girl. I was not too optimistic since I have tremors. However, the ladies in the group taught me how to knit on a loom. I now make beautiful hats which I donate weekly to cancer patients. I was really feeling proud of myself.

One week there was a senior fair in the ballroom at the JCC while I was in my knitting group. I took a break from my knitting to go and check out the senior fair. While walking around the fair, I saw “Jet Express” and I stopped and asked about it. I was told that this was a service which the Goodman Jewish Family Services provided to seniors for $100 a year. The service is to pick up seniors and to bring them to medical appointments, shopping or social engagements. They needed volunteers to pick up these seniors. This sounded like fun to me. I called up Pam at Jet Express and signed up.

Since signing up, I have enjoyed taking seniors to medical appointments, the beauty salon, shopping or just spending the afternoon with a senior going wherever they would like. I find the seniors so interesting. I have one senior that has lived in Florida since the 1950s and she tells me what South Florida was like when she first came. Some seniors are here alone. Their children live out of state and they are lonely. I have one senior who I take out to lunch weekly. I find I learn so much from these seniors and I bring them home so happy. As happy as they feel, I always feel happier that I could do this for them.

Left, UOAA Advocacy Manager Jeanine Gleba with ,right, Lynn Wolfson taking part in the DDNC Day on Capitol Hill.

I then found out about The Cupboard – the kosher pantry which services individuals or families who cannot afford groceries, and Holocaust Survivors. The Cupboard is also part of the Goodman Jewish Family Services. I go to the Cupboard weekly to take grocery orders from the clients and help deliver the groceries. Since I cannot carry due to my medical equipment, I have a partner who can carry the groceries when I am delivering. I do the driving. Again, I really enjoy meeting and talking with all the clients. They are so appreciative of everything we do for them!

Many of the clients who are having a difficult time, emotionally, physically or financially are so elated when they see us, as they know they are not alone. I know for myself, that each one of us was given a “deck of cards” on life and there is no one that has received a perfect deck. We all have “rotten” cards. Those people that can overcome these “rotten cards” will be the most successful and happiest. However, as humans, we all need a hand in helping us to overcome our individual challenges.

Once we can master our personal challenges, there is no greater joy than giving back to others. Helping others helps each of us to love life even more and appreciate our individual gifts. Life is a matter of attitude. Those with a positive attitude can not only overcome their own challenges but also help others do the same.

Expect More – Take Control of Your Health Care

Part 5 in Series

By Jeanine Gleba, UOAA Advocacy Manager and Sue Mueller, CWOCN

In Part 5 of the Expect More – Take Control of your Health Care series, we tackle the sticky subject of health insurance and the importance of knowing what you’re getting in your policy. How many people plan on getting an ostomy? It’s one of those things that happens in life. So you learn to live with it and then adding insult to injury you discover that the health care insurance you had proves to be inadequate to cover the costs of your ostomy supplies.  You are stunned to discover that ostomy supplies cost $300-$600 a month. Suddenly you’re expected to adjust to your new circumstance and also cope with a significant cost as you scramble to find solutions.

Every year individuals have an opportunity to re-evaluate their health care needs and insurance coverage, and if need be, during that window of opportunity, change health care plans or increase coverage.  

How do YOU get your health care insurance?

First step is to know exactly where your coverage is coming from so you know where to get information from and ask questions.

You get health care insurance:

  1. Through your employer (usually you and your employer share costs)
  2. When you buy your own healthcare insurance from your state Health Insurance Marketplace
  3. You qualify for Medicare by age and work history
  4. You qualify for Medicare by disability and work history.
  5. You qualify for Medicaid because you are a dependent child,are a parent of a dependent child, or by low income.
  6. You qualify for military health benefits because you or your family are active US military, or have retiree benefits.
  7. You qualify for veterans benefits because of your military service and honorable discharge.
  8. You qualify for American Indian/Alaska Native healthcare coverage.

What are your medical needs?

You can begin to determine your needs by calculating your medical risks. What is your medical history and your family’s medical history?  What are your lifestyle health behaviors (i.e., diet, exercise, smoker etc.)? As you age, your medical risks increase, so take this into consideration when planning health insurance coverage. If you have several medical diagnoses/pre-existing conditions (e.g.., colostomy, urostomy or ileostomy), take prescription medications, and require visits with specialist physicians you have different needs and risks than someone with no diagnoses and no prescriptions.

So what is the best employment and financial strategy for you? If you can’t afford marketplace healthcare insurance can you or your spouse become employed by a large company with comprehensive benefits? What is your age? You might make one choice at your present age and another choice at a later date. Ask around, educate yourself, every state has a number to call to get healthcare insurance information (ask for SHIP- state health insurance assistance plan).  For example, some people don’t understand that they need to sign up for Medicare Part B insurance (where ostomy supplies are covered) when they are first eligible or simply don’t because of the additional premium due. Others have been misinformed and thought the VA would cover all their healthcare needs; however, they actually need to sign up for Medicare A and B AND use the VA. Also many people don’t realize that there is a penalty for not signing up for Medicare B and D when you are first eligible.

Once you calculate your medical risks, examine your finances and are choosing a healthcare policy, you need to know:

Your health insurance policy is an agreement between you and your insurance company, a contract. The policy lists a package of medical benefits such as tests, drugs, and treatment services. The insurance company agrees to cover the cost of certain benefits which are listed in your policy. These are called “covered services.” Your policy also lists the kinds of services that are not covered by your insurance company, and circumstances that are not covered (exclusions). You have to pay for any uncovered medical care that you receive. Don’t confuse what your policy covers with what is “right”, what your neighbor’s policy covers or what you think you are “entitled to”. What is covered is what is stated in your policy. If you understand this key concept it will save you a lot of stress down the road. This concept is true for Medicare, for Medicaid and all other health insurances who set the terms (rules) of the insurance policy agreement that you have made with them.

Insurance Basics

Some other items you need to know about your health insurance are these basic terms:

Plan Types- HMO (Health Maintenance Organization, managed care), PPO (Preferred Provider Organization ), POS (Point of Service). They all have different rules.

Premium- If you have employer sponsored insurance this is the amount you or your employer pays for your insurance coverage. Frequently you pay part and your employer pays part. If you are buying the insurance independently this is what you pay for your insurance. This is paid even if you don’t need to go to the doctor or use your insurance. Insurance costs vary by state.

Deductible- What you need to pay before your insurance kicks in. (Original Medicare and many companies have an annual deductible which must be met. Some people save money on the cost of insurance premiums by buying high deductible policies). You may get denied for supplies or a service because you have not met your deductible for the year. For example, someone with an annual deductible of $4,000 will have to pay for all of their supplies or health services until they reach that $4,000.

Coinsurance- The percent of the cost that you are responsible to pay for covered services after you meet your deductible. (ex. Original Medicare pays 80% of the Medicare approved amount of a covered service you pay 20% unless you have a supplemental policy which picks up the remaining 20%). Medicare Advantage Plans/Type C insurances set the costs of the copays which are covered in their benefit booklets. Some people have purchased insurance through the Affordable Care Act (Obamacare) Marketplace and tried to save money on premiums but found that they are responsible for 30% of the costs with insurance paying 70%.

Copay- This is the fixed amount of money you pay for certain services such as prescriptions or MD visits. Usually, visits at urgent care or the emergency department have higher copays. These rules are all listed in your insurance policy and/or benefits book. For example, a plan might indicate that you pay $20 for each doctor visit.   

In-Network versus Out-of-Network Benefits- An in-network provider is one contracted with the health insurance company to provide services to plan members for specific pre-negotiated rates. Typically, when you see an in-network provider you receive 100% coverage.  An out-of-network provider is one not contracted with the health insurance plan and you will need to pay a percentage of the cost of the services (usually insurance covers 80% and you pay 20%).

Accepts Medicare assignment- Means your doctor, provider or supplier agrees to accept the Medicare-approved amount as full payment for covered services.

Non participating providers have NOT signed an agreement to accept an assignment. They can charge you more than the Medicare approved amount up to the “limiting charge”.

Maximum Out of Pocket Expense- This is the maximum amount that you pay for in-network services and prescriptions in a calendar year. This includes the deductible, coinsurance and copays. It is wise to keep track of what you have paid for and be aware of the amount of the maximum because after this amount is reached the services are covered 100%.

For a more complete list of insurance term definitions visit this website.

All of the above can change, so it’s important to annually review your plan and see if it still meets your needs. This can greatly affect the cost to you for your health care, so it’s always a good idea to compare plan options, estimate the costs of your care and consider all of the insurance costs (premium, deductible etc.). How well does your insurance cover your needs?  For example how much do your supplies cost each month and how much will you pay out of pocket until your plan coverage starts paying the bill? UOAA gets many calls from people who are looking for help with paying for their ostomy supplies because they can’t afford their high deductibles or copays.

Are your ostomy medical necessities a covered benefit?  

Is a medical necessity the same as a covered benefit? A medical necessity is something that your doctor has decided is necessary. A medical benefit is something that your insurance plan has agreed to cover. In some cases, your doctor might decide that you need medical care that is not covered by your insurance policy. Insurance companies determine what tests, drugs and services they will cover. These choices are based on their understanding of the kinds of medical care that most patients need. Your insurance company’s choices may mean that the test, drug, or service you need isn’t covered by your policy and then you will need to pay for that service or item. It’s important to know what is covered by your insurance policy such as your ostomy supplies, so you will need to consult the summary plan description and evidence of coverage, (ex. benefits booklet, Medicare and You publication). The customer service agent may be able to tell you how to document your need or what they require if you have a medical reason to need more or different supplies.

Knowing what you need and being able to explain it is vitally important. Don’t expect people who don’t have an ostomy or experience with an ostomy to understand what you need. An example of this is the gentleman who had a new ostomy and went to an insurance broker to choose a Medicare C /Medicare Advantage Plan. He was assured that the plan he chose was an excellent plan and certainly covered all the bases. What resulted was that he had very high copays for his supplies and it was not a good plan for him at all. He also was not aware that if you join a Medicare Advantage Plan for the first time and you aren’t happy with the plan, you have special rights under federal law to buy a Medigap policy if you return to Original Medicare within 12 months of joining (Medicare and You- section 5).

Today the vast majority of health insurance plans do cover ostomy supplies, but how they are covered varies.  Make sure you ask if the plan will cover what you need and how they will cover it. As you compare plan options and shop around ask yourself these 10 Questions to Ask Before You Choose a Health Plan.

Final thoughts

It is critical that as an ostomate you be your own patient advocate and ensure your health plan covers your medically necessary ostomy supplies. Insurers should not determine your medical treatment plan.  That should be between you and your medical professional.

Really, there is a logical structure, rhyme and reason to all this health insurance business and if you approach it with that in mind you will be more successful. For more information on insurance reimbursement check out this webinar.

Take the time and effort to do some necessary research on insurance plans to find the best quality, and most cost-effective to meet your ostomy needs and financial situation. In the long run you’ll be thankful you did.

Take control of your healthcare and don’t let your health plan let you down!

Disclaimer: UOAA does not provide insurance advice or financial assistance for supplies. We do recognize there may be times for emergency supplies. Please use this list of resources which may provide assistance on a temporary basis.

Ostomy Support, Love and Giving Back

By Jeanine Gleba, UOAA Advocacy Manager

On November 11th the United States observes Veterans Day to honor all those who have served in the United States Armed Forces. This year at UOAA I’d like to shine a light on two Veterans with ostomies who now continue to serve as volunteer advocates with UOAA in the Advocacy Network. Most recently, they were able to raise ostomy awareness in the state of Texas by garnering not one, not two, but three proclamations from their town, County and the Governor!  

Dan Shockley is an Operation Desert Storm; Operation Enduring Freedom (OEF) and Operation Iraqi Freedom (OIF) veteran.  He served for 22 years in “the world’s greatest Navy” onboard 7 different ships. His last tour before retiring was after 9-11 on the ground in Bahrain in direct support of OEF and OIF between September 2001 – September 2003. In 2012 after his first and only colonoscopy revealed 100 polyps embedded in his colon, rectum and anus, he was diagnosed with a rare gene mutation known as attenuated familial adenomatous polyposis (AFAP). In July 2012 at 51 years of age, he had successful ileostomy surgery at Tripler Army Medical Center, Hawaii.

 Donna Desoto, Dan’s girlfriend, began her Military career in 1976. She was in the last basic training class of The Women’s Army Corps (WACS). She also attended the Medical Lab Assistant school at the Academy of Health Sciences at Ft. Sam Houston, TX. She was then chosen to join the medical research team at Headquarter Co Troop Command at Brook Army Medical Center under the Clinical Investigation Services. She co-invented a vaccine for burn patients and received The Army Commendation Medal for meritorious service of her research between 1976 to 1979.  While serving in the military she was diagnosed with Chronic Interstitial Cystitis. After over a year of trying to save her bladder with an experimental drug instilled in her bladder surgically, she had urostomy surgery. She also had a stroke prior to that due to an allergic reaction to an unknown medicine. It took 25 plus surgeries before removing her bladder. She was in the hospital the whole time leading up to the final removal of her bladder and then was medically retired in 1981.

I recently caught up with them and asked the following questions:

UOAA:          How did you two meet and become a couple?

Dan:            Donna and I met on the Singles with Stomas Facebook group in the summer of 2016. We commented on each other’s posts. In the following months we developed a friendship based on our commonalities. We’re both retired military, left-handed, interested in medical research, and of Scottish descent. In May 2018 she called me suggesting it was time for us to get together. At the end of July I relocated to South Texas to be with her.

UOAA:             Such a great story!

UOAA:          How did you get involved in UOAA?

Dan:           My involvement began as an inpatient at Tripler Army Medical Center, Hawaii, after my surgery. Tripler’s WOC nurse shared with me information about United Ostomy Associations of America. At that point I was eager to share my diagnosis and story with others and UOAA and become an advocate.

UOAA:            It’s so important for people to realize that they can make an impact when they do share their story whether it is inspiring someone else or making the journey a little easier for someone questioning life with an ostomy.  There is also a big need in our advocacy efforts especially legislatively because elected officials want to help their constituents who the issues directly affect and hear their stories.  We can raise so much more awareness when we grow in numbers.

UOAA:           Why do you advocate for ostomates?

Dan:               My life’s focus as a colon cancer warrior, having a rare gene mutation and an ostomy is to be a source for the importance of early detection. It’s also important to me to show that life can go on having an ostomy. I consider my diagnosis a challenge rather than obstacle. That said, there’s an old cliche you can lead a horse to water, however you can’t make it drink. I’ve heard there is a way to influence the horse to drink when it reaches the watering hole. Feed it salt along the way. Hopefully my story will serve as a source of salt for those who read it.

Donna:         The main reason I feel the importance of advocating for ostomates is because I feel increasing awareness is very important and other more well known causes get lots of awareness whereas I see that many people have little or no knowledge of what an ostomy is.  Also, I see a need legislatively for ostomates in areas that should be addressed especially one area I have experienced is the usage of restrooms and other public issues.

UOAA: Why is it important for people to get involved?

Dan:        Projecting a positive outlook is important to me. Having an ostomy is a lifesaving surgery. By sending out positive vibes I receive them back tenfold. I may have been diagnosed with AFAP but my AFAP mantra is: Always Forge Ahead with a Purpose!

Donna:   Being involved with UOAA and my other volunteer efforts (Donna founded Sav-Baby Inc.) has helped me to take my mind and focus away from my medical challenges and pain and allows me the opportunity to reach out to those struggling with their current or ongoing medical issues. Not only can I hopefully be an inspiration to others it is also an opportunity to make new friends and encourage them to get involved in some way such as a being a friend to someone else or becoming an advocate or volunteer.

UOAA:          And you and Dan certainly became friends! One of the most significant things that UOAA does is provide support through our Affiliated Support Groups.  It is one of the top reasons that we get calls into our 800 information line.  People are looking for emotional support and to meet others going through similar experiences so they can learn from each other.

Dan:       I’ve been a member of UOAA support groups in Eagle, Idaho; Carmichael, California, Honolulu, Hawaii and now both of us just started attending meetings at the South Texas Ostomy group in San Antonio, TX.

UOAA:         Do you talk about your ostomy and/or military experience with others?

Dan:        I share my ostomy and military experiences every opportunity that presents itself. As a “live case presentation” for the medical community and ostomy groups I feel it is important to show life can go on as if nothing happened. Being a source of inspiration and encouragement is important to me. It’s been said we’re unable to change the wind. However, we can adjust our sails. After 22 years in the Navy I’m good at adjusting. That’s my story and I’m sticking to it!

Donna:       I talk freely with others about my ostomy. I am no longer ashamed or embarrassed.  I am so proud to be a Canadian who became a US Veteran and citizen. I participate in both military and ostomy groups.  I try my hardest not to let my ostomy limit anything I choose to do in my life.

UOAA:            What does Veterans Day mean to you?

Dan:        Veterans Day is when I reflect on and recognize those who made the ultimate sacrifice to defend our 13 stripes and 50 stars. My father served in the Army during WWII, two of my uncle’s served in the Navy and 1 uncle served in the Marines during the Korean War. My brother served in the Air Force during the Vietnam conflict.

Donna:       Veterans Day is a very emotional day for me for so many reasons. My thoughts and prayers go out to all our Sisters and Brothers who lost their lives for our freedom, as well as those currently serving, those now retired and all of their loved ones.  The real special part of Veterans Day for me is that I was born in Canada. After college I decided to join the US Army and officially become a US citizen. I was so proud the day I became a US citizen and that same proudness was felt when I took my path to become a volunteer member of the US Army.  When my two adopted children were little and my little girl that I saved from abandonment was old enough I would tell them that I was “an Alien who wore combat boots”. They loved to share that story with their friends. My Uncle enlisted in the British Army and his submarine was lost during the war. His mother, my Grandmother, who brought me up in the United States was so sad on Veterans Day as it was forever painful losing her oldest son.

UOAA:             You are both a reminder to me of John F. Kennedy’s inaugural speech, when he said the infamous words, “Ask not what your country can do for you, ask what you can do for your country.”  You both embody “service”.

As Advocacy Manager I am in the unique position to not only hear many amazing ostomy stories of resilience but also to watch many passionate and fascinating people as they take action and work together to achieve a common good cause for our community.  It is truly an honor and a privilege for me to work alongside such dedicated, impressive and patriotic volunteers like Dan and Donna.

Thank you to all Veterans who have or are actively serving America! Happy Veterans Day!

“Here’s my UOAA acronym:” ~ D. Shockley

                                                      Understand (your diagnosis)

                                                      Overcome (adversity)

                                                      Attitude = 100%

                                                      Adapt (to your lifestyle as an ostomate)

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.