How to Be an Effective Partner in Your IBD Care
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.
Today, providers are moving toward tailoring treatment to address individual patient needs and helping them achieve remission. This approach, known as “treat-to-target,” works to improve IBD care and outcomes by encouraging patients to partner with their health care teams to identify specific treatment goals and monitor progress toward those goals.
While clinical remission (absence of symptoms) is one level of success in managing IBD, the treat-to-target approach is geared toward achieving mucosal healing, when no active inflammation is seen during a colonoscopy, and histologic remission, when there is no active inflammation seen at the tissue level. Achieving these levels of mucosal healing or histologic remission generally results in a lower risk of flares, fewer surgeries, lower reliance on steroids and reduced hospitalizations.
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.
Crohn’s & Colitis Foundation of America