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.
While some people read comic books to escape reality, illustrator J.G. Jones is using his artwork to illustrate his reality, and the reality of others like him who are living with a group of rare, chronic, progressive blood cancers known as myeloproliferative neoplasms (MPNs).
Imagine how your life would change if you were unable to bring a cup to your mouth without spilling, if you couldn’t do the buttons on your clothes or even brush your teeth without difficulty. If you are one of the 7 million Americans living with essential tremor (ET), you already know what that’s like. Learn more by reading the full Medium article here.
Cannabidiol, or CBD, is a component of the cannabis plant lacking the “high” associated with marijuana, and right now products claiming to contain CBD are everywhere — from gummies to cocktails, ice cream to hand cream, and more. An estimated 64 million consumers, according to a January 2019 Consumer Reports survey, have tried products containing CBD in the past two years alone. But do you know what you are buying - and taking?
(BPT) - Before you reach into that jar of CBD gummies, or add some CBD oil to your bath, proceed carefully. Do you really know what’s in that “miracle cure” that you purchased online or at the health store for anxiety or your aching back?
Cannabidiol, or CBD, is a component of the cannabis plant lacking the “high” associated with marijuana, and right now products claiming to contain CBD are everywhere — from gummies to cocktails, ice cream to hand cream, and more. An estimated 64 million consumers, according to a January 2019 Consumer Reports survey, have tried products containing CBD in the past two years alone.
With widespread marketing that is largely unregulated, CBD purchased online or at stores is often promoted as a one-stop product for a range of potential health benefits, such as relieving stress, soothing aches and pains, reducing inflammation or improving sleep.
Interest in — and access to — CBD increased with the passage of the Farm Bill which removed CBD derived from hemp (a variety of cannabis that contains very low levels of tetrahydrocannabinol or THC) from the list of controlled substances. Although CBD products are now available online or in many stores, health or medical claims made by the product manufacturers are still subject to regulation by the FDA to ensure consumer safety. Through all the current interest surrounding CBD one critical question remains: Are widely available CBD products safe and effective?
Separating fact from fiction
The contents and dosage of CBD products sold in retail stores or online are often unknown and not consistently, if at all, regulated. To navigate the current environment, consumers first need to understand that not all CBD products are equal:
So, what’s the bottom line for the millions of people currently using CBD products? As the saying goes, the smart consumer is the wise consumer. The FDA approval process is considered by many to be the gold standard in the medical field and was put in place to protect patients. Taking unregulated CBD products that lack scientific evidence can pose health risks, particularly for very sick patients who may be looking for hope in these products, in part, because of unproven health claims.
You deserve to know what you’re taking
It can be difficult to know if CBD products actually contain what they claim. A 2017 study published in the Journal of the American Medical Association found that almost 70% of all CBD products sold online did not contain the amount of CBD stated on the label — 42% contained a higher concentration of CBD than the label claimed, and 26% of the products contained less. Twenty percent included enough unlabeled THC to cause intoxication, especially in children. The FDA also evaluated some of these products and found that they did not contain the levels of CBD that they claimed. More studies and regulations are needed to ensure these products are safe for consumer use.
An important moment in the evolution of CBD occurred in June 2018 when the FDA approved Epidiolex® (cannabidiol) oral solution CV, the first prescription CBD medicine. Because it is a prescription, available in pharmacies just like any other FDA-approved medicine, it is legal throughout the entire U.S. when prescribed by a licensed health care professional. It is the only FDA-approved CBD product currently available.
“The approval of Epidiolex is historic not only for the long-awaited relief it provides patients with Lennox-Gastaut syndrome and Dravet syndrome, two very difficult-to-treat epilepsies, but also for the parameters it has put in place for how a CBD medicine should be studied to understand its safety profile and efficacy,” said Justin Gover, CEO of GW Pharmaceuticals, plc, the company responsible for Epidiolex. “We hope that this opens the door for further well-controlled clinical studies of CBD in other medical conditions to achieve FDA approval and ensure patients are getting the medicines they deserve.”
This sponsored article is presented by Brandpoint.
Every day nearly 200 people die from an overdose of drugs or from alcohol poisoning, with opioids responsible for the majority. Recognizing the signs and knowing how to respond to medical emergencies, including carrying and administering naloxone in cases of opioid overdose, can literally save lives. Here are tips from the American Society of Anesthesiologists (ASA) on what to do in case of a suspected overdose.
(BPT) - Every day nearly 200 people die from an overdose of drugs or from alcohol poisoning, with opioids responsible for the majority. Recognizing the signs and knowing how to respond to medical emergencies, including carrying and administering naloxone in cases of opioid overdose, can save lives, says the American Society of Anesthesiologists (ASA).
“The tragic increase in overdose deaths is an alarming and devastating issue that touches so many of us,” said ASA President Mary Dale Peterson, M.D., MSHCA, FACHE, FASA. “If you can identify an overdose or alcohol poisoning, you are more likely to react quickly, making the difference between life and death for a family member, friend or stranger.”
Physician anesthesiologists have a critical role in fighting against overdoses, starting with managing patients’ pain after surgery or chronic pain in responsible ways. During Physician Anesthesiologists Week, Jan. 26-Feb. 1, ASA is joining forces with U.S. Surgeon General VADM, Jerome Adams, M.D., M.P.H., to empower everyone to recognize the following signs of an overdose or alcohol poisoning:
Any one of these signs should prompt a call to 911 for emergency medical care. Never leave an unconscious person alone, as they may be at risk of dying, including by choking on his or her own vomit. If an opioid overdose is suspected, naloxone should be administered immediately, if available. Naloxone is administered by injection or nasal spray and access to it is expanding on a state-by-state basis. It can be prescribed by a physician and often is carried by police officers and emergency medical responders. Additionally, it’s increasingly available over the counter at some pharmacies.
“To stem the tide of the opioid overdose epidemic, we need everyone to consider themselves a first responder. We need to encourage everyone in our communities to carry naloxone and know how to use it,” said U.S. Surgeon General, VADM, Jerome M. Adams, M.D., M.P.H., a physician anesthesiologist who issued a Surgeon’s General’s advisory in 2018 calling for increased awareness and use of the medication. “When on hand, naloxone may mean the difference between life and death, and can be a first step to getting someone onto the pathway of recovery.”
Anyone who takes opioids to manage their pain may be at-risk for an overdose. In recent years, opioids were the go-to pain reliever for everything from backaches and injuries to post-surgical and chronic pain. In 2017, more than 190 million prescriptions were written for opioids. While they can be effective for short-term pain, chronic use can lead to abuse. Every day 130 people die from opioid overdoses, according to the Centers for Disease Control and Prevention.
“ASA strongly agrees with the Surgeon General and supports policies that promote access to naloxone and safe and effective pain management care,” said Dr. Peterson. “All of our members have a significant interest in reducing misuse, abuse and diversion of opioids that have led to unintended deaths.”
To learn more about the critical role physician anesthesiologists play before, during and after surgery, visit asahq.org/WhenSecondsCount. ASA also offers an opioid overdose resuscitation guide that provides guidance on symptoms of an overdose and how to help.
Migraine headaches are literally life-altering, chronic health concerns for millions of Americans. In this article, we examine the latest medical research and examine the most common reasons why you may be getting constant migraines.
Migraines are not an easy thing to deal with. For most people, the onset of a migraine calls for a dark room and resting in bed. Although migraines seem to happen out of nowhere, there are usually some reasons why they even appear in the first place. Therefore, the following list includes some of the most common reasons why you may be getting constant migraines.
Recent studies have concluded that stress is the number one factor when it comes to the reason why people are getting migraines. In fact, over 50 percent of people associate their migraines with stressing. Look back to your past few weeks at work or school. Figure out what things are causing you great stress and how you can reduce those triggers. You can then add additional preventive measures, such as getting relaxation therapy, setting aside time for exercise and making sure you get enough sleep each night. If you find yourself spending a lot of time on the computer, the stress combined with eye strain and electromagnetic fields (emfs) may just make your headaches worse.
Although rarer than most reasons, vision problems such as nearsighted, farsighted, or astigmatism can be the reason behind your migraines. Often, it is the pressure to work on our computers for long hours, or your eyes are simply losing their strength as you age. You should have a regular eye exam to test for common eye disorders. This will provide you with some treatment options; however, reducing the amount of computer/phone time should also be practiced as well.
One of the most overlooked reasons for migraines is medication overuse. As the old saying goes, too much of something good can be bad. This is essentially the reasoning behind this theory. Medication that is continuously used and in heavy doses may cause you to experience those constant migraines. Therefore, people are recommended to cycle off their medication in order to remove any harmful toxins that may reside within them. Often, people need to get special help from a doctor to withdraw from these medications that put them at risk for rebound pain or dependency. Note that you should first consult with your physician about this theory and work together to reduce your medication enough to where migraines are either entirely gone or significantly reduced.
Although the information above describes the most common triggers for migraines, there are plenty of more reasons to go around. Also, people can suffer migraines depending on certain situations and conditions that are unique to them. Therefore, it is always recommended that you research some of the reasons behind your migraines and speak with a medical professional in order to receive a proper diagnosis and treatment plan.
Although rare cancers don’t occur often, they can affect people of all ages and genders. Greater awareness of rare cancers may lead to earlier diagnosis and management, and potentially better survival rates. Consider these facts about soft tissue sarcomas, one type of rare cancer.
Understanding Rare Cancers
Four facts to know about one type of rare cancer, soft tissue sarcomas
(Family Features) Although rare cancers don’t occur often, they can affect people of all ages and genders.
A rare cancer is defined as fewer than 15 new diagnoses per 100,000 people per year, according to the National Cancer Institute (NCI). Additionally, as noted by the American Cancer Society (ACS), the 5-year survival rate is lower for people diagnosed with a rare cancer than for people living with more common cancers. Greater awareness of rare cancers may lead to earlier diagnosis and management, and potentially better survival rates.
If you have recently been diagnosed with STS, it’s important to ask your doctor for more information about the specific sub-type you have. For example, if you received a diagnosis of undifferentiated sarcoma, ask your doctor for an integrase interactor-1 (INI1) test to see if you have a rare STS called epithelioid sarcoma (ES). (See sidebar for more on ES.)
Learning More About Epithelioid Sarcoma
A rare type of STS, epithelioid sarcoma (ES) accounts for less than 1% of all STS, which themselves account for approximately 1% of all cancers, according to research published in “Archives of Pathology & Laboratory Medicine.” ES can present as a lump or sore on the skin.
Notably, more than 90% of ES tumors do not express the INI1 protein, which when present acts to suppress tumor growth. INI1 loss plays an important role in the diagnosis of ES, according to researchers with “The American Journal of Surgical Pathology.”
Data from the NCI indicates that approximately 150-200 people in the United States are diagnosed with ES each year. Research published in “The Journal of Clinical and Aesthetic Dermatology” found the disease often occurs in young adults in their 20s and 30s. Because most ES patients are adolescents and young adults, there is a gap in the unique psycho-social needs for this patient population, including resources for patients who miss school while undergoing treatments, as well as fertility considerations later in life.
If you or someone you love is living with ES, you can find resources, information and the real-life perspective of an ES survivor at ESsentialsforES.com.
Content courtesy of Epizyme, Inc.
Photo courtesy of Getty ImagesSOURCE:
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