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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.

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

I’m having leakage under my pouching system.

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

 

My skin is irritated and weepy.

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

 

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

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

 

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

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

 

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

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

 

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

 

Have a concern that wasn’t mentioned here?

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

 

Need someone to talk to?

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

 

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

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

By Tricia Hottenstein

The problem with being strong is that people expect you to always be strong. When your body has been put through so much, people expect it to willingly fight through anything. After life hands you a few too many lemons, you’re expected to just make an extra-large lemonade. The problem is, sometimes I can’t be strong. Sometimes I just don’t want to be.

When I get a new diagnosis or the old one flares up, I don’t always react with immediate strength. When I wake up to a leak or suffer through an obstruction, I don’t always react with immediate strength. When I need to call off work or cancel with friends and feel like I’m letting people down, I don’t always react with immediate strength. And sometimes, my lack of strength is why I need to cancel. Because it is damn exhausting sometimes. Dealing with life, dealing with an ostomy. Dealing with doctors and tests and medicine. With random pain or nausea. With what seems like a constant cycle of bad news after the last bad news. Dealing with an independent and stubborn 5-year-old when I’m not at my best. It’s exhausting.

And I just don’t want to be strong. I want to slump down in my seat and sob. I want to be needy, and helped. Most of the time, I feel like the benefit to

The author gets some much-needed self-care that is so important in life with an ostomy or chronic disease.

this life is that it made me a better person, a better friend. I can support someone through their hard moments because I’ve been through enough of my own. I may not be the most compassionate person in the world, but I will be there. For even an acquaintance. I will help anyone I can, however, I can. But the downfall is that sometimes I want to be the person on the other end. I give my strength to so many other people, yet for the most part, I feel I rely mostly on my own. And most of the time, I am strong enough for that to be possible.

Although I always think I’ve had this strength, having an ostomy made it necessary to rely on myself. By the time I had the surgery, I learned what I could and couldn’t eat. I had to self-navigate my triggers and try to make sense out of them. Oftentimes, I needed to coordinate doctors with specialists and be competent enough to fill in the blanks of my medical history. Mainly, I just had to deal. With the embarrassment, the unpredictability, and the often crippling pain. And then I had surgery, and had to be strong all over again. I had to relearn what I could and couldn’t eat and figure out all the tricks for keeping my ostomy happy. The learning curve was a tough one. Sure, there are support groups. But this is also an individual journey and I needed to be self-sufficient and strong.

But mid-meltdown? I am not. I want to be weak. I need to take a moment to feel sorry for myself. I do not want to hear about how I can beat anything because my body has already tackled everything else. I need to cry and process all the thoughts swirling in my head. I need to feel frustrated at the nonstop barrage of crap being thrown at me. I need to let my shoulders fall and my eyes sink. I need someone to be there for me the way I hope I would be there for them. I just need a moment. Because honestly, I AM strong. And I am damn proud of it. I try to be positive and handle things with composure and as much grace as my body (and personality) can put forth. And once I stop feeling sorry for myself, I will stand up and shake off and go forward and tackle everything on my plate with a vengeance.

I just need a moment.

More on Emotional Health

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Exercise your fitness options with these helpful tips

by Wil Walker, MBA, BSN, RN, WOC Nurse Manager, Clinical Education, Hollister Incorporated

When is it safe to start exercising after ostomy surgery?
Stoma surgery is a major event that should not be underestimated. The first few weeks or even months following the operation may be difficult as you adjust gradually to having a stoma. The easiest and most effective form of exercise can be walking. It’s best to check with your healthcare provider to determine the right time for you to begin exercising, as every person can be different.

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I’m nervous about doing sit-ups and crunches because I have heard that I could develop a hernia. Are there precautions I can take to avoid this?
There may be a risk you will develop a hernia around your stoma that can be associated with straining or heavy lifting during strenuous abdominal activity. You can help prevent the development of a peristomal hernia by taking certain precautions. Keep your weight in check and talk with your surgeon before resuming any abdominal exercises.

How will I know that I am sufficiently hydrated?
One good sign of being well hydrated is passing clear or straw-colored urine throughout the day. Dehydration can be a concern for overachievers, whether they have stomas or not. Drink plenty of fluids at every opportunity to avoid problems with your stoma and with dehydration.

I am still very tired after my surgery. What kind of exercise can I do to start out?
Begin by walking in your house. Special videos and DVDs, or even just some invigorating music will help set the pace. You might practice going up and down stairs to increase stamina and endurance. But, if weather permits, walk outside in the fresh air to help boost your physical and mental spirits!

I love swimming but I’m nervous that my pouch will become loose in the water. Is there anything I can do to make sure this doesn’t happen?
This is a valid concern for a person with an ostomy. To determine how your pouch might perform while swimming, it is recommended to “test” your pouch. Sit in bath water for a while and assure yourself that the seal stays snug and leak-free.sports and fitness with an ostomy, sports, fitness, exercise, active living, colostomy, ileostomy, urostomy

I ran my first marathon after ostomy surgery and little red marks appeared on my stoma. What are these and should I be concerned?
With a lot of running, little red marks similar to mouth ulcers might appear on the stoma because of rubbing or chafing. They should heal quickly and disappear with rest. If they don’t resolve, contact your healthcare professional.

When I exercise I perspire a lot. Is there anything I can use to avoid chafing around my pouch?
If your pouch fits properly and is not too long, it should not touch or rub against the skin. Empty your pouch before any strenuous activity as well to decrease the weight of your pouch. Consider using a pouch that has a comfort panel to avoid the pouch film from rubbing against your skin.

Have a question that wasn’t answered here? Check out this helpful new brochure from Hollister Incorporated. Living with an Ostomy: Sports & Fitness.

Hollister Secure Start services provide ongoing support to people living with an ostomy. We are here to help! Call us today at 1.888.808.7456.

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

UOAA Supports the Survivors of Colorectal Cancer

 

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

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

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

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

You can also get involved in our advocacy efforts for colorectal cancer. Congress has introduced a bill Removing Barriers to Colorectal Cancer Screening Act (H.R. 1017/S. 479). This act would fix a problem in Medicare that is a major deterrent to senior citizens getting screened. Currently, Medicare covers screening colonoscopies at no cost to the patient, but if polyps are removed during the screening procedure, beneficiaries are hit with unexpected costs.  Ouch!  This bill waives Medicare coinsurance requirements with respect to colorectal cancer screening tests, regardless of the code billed for a resulting diagnosis or procedure. See our action alert for an easy way to contact your lawmakers and show your support for this lifesaving effort.

The bill currently has over 240 bipartisan sponsors.  Help us advocate for final passage of this legislation in 2018! Talk to your doctor to see if you are at risk or due for a colorectal cancer screening.

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

 

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

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

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

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

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

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