How to Be an Effective Partner in Your IBD Care
(Family Features) A lifelong diagnosis like inflammatory bowel disease (IBD) may feel overwhelming and confusing, but by working closely with your health care providers, you can work toward managing the disease and improving your quality of life.
Consider these recommendations from the Crohn’s & Colitis Foundation to partner with your health care team to manage your IBD.
Be Upfront About Your Symptoms
Being honest with your doctor about your symptoms is an important first step in your journey with your IBD diagnosis. Oftentimes, this starts by sharing exactly what you are experiencing on a daily or even weekly basis, such as frequency of bathroom visits, pain, blood in your stool or fatigue, so your health care team can gain a better understanding of how you are feeling. One way to help ensure you’re managing your diagnosis properly is to keep a journal, which offers a simple way to track if symptoms have improved or worsened since your last visit and help you remember questions that may arise. If you find it difficult to discuss certain topics, practice talking about these issues with a friend or family member before appointments and consider bringing a loved one to appointments for support.
Work with Your Health Care Team to Set Goals
Goals, or targets, will be different for every patient based on the type of disease, severity, progression and a variety of other factors. Finding the right IBD treatment can take time, so it’s important to balance your present priorities. Start by taking an honest approach to your personal preferences regarding medications. Consider if you have time in your schedule for lengthy infusions. Or perhaps you prefer administering self-injections. You may have short-term goals, such as attending a family wedding in two months, as well as long-term goals related to the future course of your disease, like reducing IBD inflammation and achieving remission, which is considered mucosal healing. This process is often called “treat-to-target” in the medical community and helps avoid complications and minimizes long-term disease risks as much as possible.
This goal-oriented approach to managing IBD is much like setting a target and trying to hit the bullseye. It can’t be done by your provider alone; you need to be an active partner in the goal-setting discussion. Providing clarity to your health care professionals regarding personal preferences and your short- and long-term goals like a desire to get pregnant, to travel, to decrease stress and anxiety, gain self-care skills or to return to school can keep the entire team on the same page.
Make Decisions Together by Acting as an Effective Partner
Asking questions is the first step toward creating an effective partnership with your health care team. You can start by seeking an understanding of which diagnostic tests are important for you to undergo. Decide together which steps should be taken now and which you should aim for in the future. Be willing to learn each part of the process, including treatment options, potential risks and benefits.
It may take some time before you see any progress made toward achieving your goal. Certain treatments may take some time to work. Review any external factors that may impact the effectiveness of your treatment. Talk to your doctor about adjusting treatments and consider changing your targets if available treatments are not helping you reach your goals.
In addition to medical treatments and procedures, patients should practice self-care and seek help from mental health professionals when necessary. IBD patients are at greater risk for anxiety and depression than the general public, according to research published in “Alimentary Pharmacology & Therapeutics,” so it’s important to address these issues when they arise. Simple strategies to tackle IBD one day at a time include planning the night before for the day ahead, allowing yourself extra time in the morning and scheduling time in your day for rest. To relieve stress and anxiety, consider low-impact exercises, such as yoga, walking, biking or swimming, techniques like meditation and mindfulness or diaphragmatic breathing, also known as deep breathing or belly breathing. These complementary therapies can help improve your mental health and emotional well-being.
Along with your own self-care, it’s important to be willing to admit when you need help. For some, this may include reaching out to a mental health professional. A therapist, such as a clinical psychologist or licensed social worker can help you work through sadness, uncertainty and anxiety – emotions common for many patients with IBD. Visits may be short-term or can be longer, if needed. Effective therapy allows patients to practice the coping strategies learned between visits. Mental health therapists may also provide assignments to reinforce what is discussed during visits. Build your support system and seek guidance from mental health professionals if you ever feel as though the burden of your diagnosis is too heavy to carry alone.
A More Targeted Approach to IBD Care
In the past, health care providers managing inflammatory bowel disease (IBD) patients focused on how their patients were feeling in the moment. They worked toward fixing active symptoms and tailored treatment plans specifically to address those symptoms.
Providers adopting the treat-to-target method are likely to work with their patients to consider the risk of developing complications in the future and tailor treatment recommendations based on the disease activity and severity, patient’s genetic makeup and anticipated risk.
It’s a more proactive approach than the traditional reactive treatment style as it emphasizes the importance of looking toward the future to avoid complications of the disease and minimize risks.
To achieve a patient’s goals, a provider regularly checks to make sure the patient is responding to the strategy at certain intervals. Both diagnostic and prognostic, or predictive, tests help physicians assess progress against a target. Common tests include endoscopic procedures, radiologic scans and diagnostic and predictive biomarkers.
If tests do not demonstrate sufficient improvement, additional evaluation or treatment adjustments may be advised to provide the right drug to the right patient at the right time for treatments tailored to the individual.
Goals depend on multiple factors and variables, but the anticipated outcome is an improved quality of life for patients managing IBD. Under the treat-to-target method, goals are a mutual decision between the doctor and patient. Goals must be measurable and include a realistic treatment plan.
Find more advice for effectively partnering with your physician to manage IBD at crohnscolitisfoundation.org.
Photos courtesy of Getty ImagesSOURCE:
Crohn’s & Colitis Foundation of America
A diagnosis like inflammatory bowel disease (IBD) means lifestyle changes throughout every aspect of life, including financially. IBD has many direct costs of care, like clinic visits, radiology studies, procedures and costly medications. There are also indirect costs such as missed work or school.
A diagnosis like inflammatory bowel disease (IBD) means lifestyle changes throughout every aspect of life, including financially through direct costs of care as well as indirect costs like missed school or work. There are a number of resources like these that can help IBD patients manage the financial impact of the disease, many of which depend on the patient’s stage of life.
Managing the Cost of IBD
(Family Features) A diagnosis like inflammatory bowel disease (IBD) means lifestyle changes throughout every aspect of life, including financially. IBD has many direct costs of care, like clinic visits, radiology studies, procedures and costly medications. There are also indirect costs such as missed work or school.
There are a number of resources that can help IBD patients manage the financial impact of the disease, many of which depend on the patient’s stage of life. For example, young adults transitioning into the workforce and off their parents’ insurance may find their needs quite different from older adults who are approaching Medicare eligibility.
Evaluate your IBD needs and select an affordable insurance plan. When you turn 26, you age out of your parents’ health insurance plan. Your options may include enrolling in a plan sponsored by your employer or your spouse’s employer; purchasing a plan in the health insurance marketplace (you can enroll 60 days before you turn 26 and the timeframe ends 60 days after your birthday); purchasing insurance on the individual market; purchasing COBRA (a temporary health insurance plan that is extended under your parents’ plan for up to 18 months); or going on Medicaid, if you’re eligible.
To decide what’s right for your situation, start by listing your current health care providers and health services. Review the insurance plan you are considering and check whether your current providers, medications and hospital are covered in the plan, and whether they are considered in-network (more cost-efficient) or out-of-network (higher out-of-pocket costs).
You’ll want to weigh potential expenses, including the monthly premiums, deductibles, out-of-pocket maximums, copays and coinsurance, if applicable. Also be aware of the distinctions between medical and pharmacy coverage. This will give you a realistic picture of what you can expect to spend on a monthly and annual basis.
For assistance with your options, consider speaking with an insurance specialist or help center, such as the Crohn’s & Colitis Foundation’s IBD Help Center, which can help you review available plans and find one best suited for your needs.
Participate in a savings program. If you have the option of participating in a Health Savings or Flexible Spending Account, these personal savings programs can help pay your out-of-pocket costs. You contribute a certain amount of untaxed money to the account each year, which can be used toward expenses like prescriptions, deductibles, copayments and coinsurance.
Each program has distinct guidelines on factors, like payment and carrying over unused funds, so it’s important to do thorough research before selecting a plan.
Enroll in manufacturer assistance programs. Depending on your specific circumstances, you may be eligible for assistance from your prescription manufacturers or lab testing companies. In addition to drug copay discount programs and pharmaceutical financial assistance programs, you might be able to access help to offset the cost of certain procedures.
Your health care provider or pharmacist may have information on available programs, or you can visit manufacturer websites and other resources like crohnscolitisfoundation.org/managingcosts.
Investigate grants, foundations, and other assistance programs. Other types of financial assistance are also available. Pharmaceutical companies, the Patient Advocate Foundation, and several other foundations offer college scholarships to IBD patients.
Purchase coordinated or supplemental Medicare insurance. As you approach the age of 65, you enter an enrollment period (3 months prior and 3 months after your birthday) when you are eligible to apply for Medicare, a federal health insurance program. In addition to original Medicare, you have the option of purchasing additional insurance for added health care coverage and benefits, such as a Medicare Advantage Plan (Medicare Part C) or Medigap plan.
Enroll in federal and state savings programs. If you have or are eligible for Medicare Part A, and if you have limited income and resources, your state Medicaid program can help determine whether you qualify for one of the Medicare Savings Programs.
State Health Insurance Assistance Programs (sometimes referred to as SHIP programs) have different names in different states but all provide free one-on-one telephone counseling and advice services, personal face-to-face counseling sessions, public education programs and media presentations for assistance with Medicare programs (including Part D) and Medicaid.
If you have limited income and resources, you may qualify for help paying for prescription drugs. The Medicare Extra Help Program is for Medicare Part D recipients and recipients of both Medicare and Medicaid who have limited income and resources to help pay for prescription drugs.
Apply for financial aid through pharmaceutical companies. Another option, if you are eligible, is to enroll in financial assistance through the drug manufacturers. Funds are available from several manufacturers and non-profits to help patients cover copays and pay their out-of-pocket costs.
Pharmaceutical patient assistance programs are separate foundations set up by the drug manufacturers to provide financial assistance to people who cannot afford their medications. You need to demonstrate financial need when you apply for these programs.
While on private insurance, you may be able to use drug copay cards. The drug company will pay for a portion of the drug and the out-of-pocket cost to the patient is considerably lower. However, drug copay discount cards are generally no longer available to patients when they transition off private insurance onto Medicare.
Investigate grants, foundations and other assistance programs. Additional assistance may be available through other foundations. Find these and other resources to assist in planning your IBD medical expenses at crohnscolitisfoundation.org/managingcosts.
Lower Your Medical Costs
1. Compare prices and select in-network providers. Always ask if your labs and support team members (all providers, not just your gastroenterologist) are in network.
2. Not all pharmacies charge the same, so shop around. Online pharmacies can often be less expensive (for example, a 90-day supply can often be the same cost as a 30-day supply).
3. Check your bill. According to the Medical Billing Advocates of America, billing advocates and other health professionals estimate up to 80% of medical bills contain errors.
4. If insurance refuses to pay, talk to your healthcare provider about appealing the insurance company’s denial.
Photos courtesy of Getty ImagesSOURCE:
Crohn’s & Colitis Foundation
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