You’ll hear a number of new words when you begin to learn about Crohn’s disease. This glossary can help you get up to speed.
Especially if you’ve been recently diagnosed, as you learn more about Crohn’s disease, you’ll see and hear all sorts of words that are unfamiliar to you — possibly at your doctor’s office, or while doing research online. This new vocabulary may seem overwhelming at times, but it’s important to get a sense of some basic terms used to discuss Crohn’s. These terms are the building blocks that will help you and your loved ones gain a better understanding of this chronic, lifelong disease.
In addition to learning common Crohn’s disease terms, people with Crohn’s to develop a positive relationship with their gastroenterologist. “Having an open line of communication and a trusting relationship will enable shared decision-making for the complex and difficult decisions that may come down the road with Crohn’s.
If you don’t understand a word or term your doctor uses when talking about Crohn’s, don’t just nod and pretend you understand — stop him or her and ask about it.
Lukin also emphasizes the importance of talking to your doctor about the potential complications of the disease and the therapeutic options available to you. “Medications likely to reverse a lot of complications, or keep them from happening in the first place.
To help boost your Crohn’s disease vocabulary, here are some useful terms to learn.
- Abscess A collection of pus that can occur because of an infection in your abdomen or pelvis, or in your anal region, according to the Crohn’s & Colitis Foundation. Antibiotics can treat an abscess, but it may also need to be surgically drained.
- Anal fissure A tear in the lining of your anus. Depending on whether the tear is shallow or deep, it may cause mild to severe rectal pain and bleeding, which may get worse during bowel movements. Topical creams and sitz baths can help, according to the Mayo Clinic.
- Anus The opening of your rectum, through which stool passes out of your body.
- Biologics These new treatments for Crohn’s and other forms of inflammatory bowel disease (IBD) are antibodies that stop certain proteins in the body from causing inflammation, according to the Crohn’s & Colitis Foundation. “Biologics recognize a specific chemical or protein within the body that is abnormal within Crohn’s, and will aim to neutralize that molecule or that protein.
- Clinical trial A research study that typically tests whether a new drug or device is safe and effective for people to use, or looks at different ways to use current treatments, according to the U.S. Food and Drug Administration. Certain people may have access to these experimental drugs as part of their Crohn’s treatment.
- Colon Is Also known as the large intestine, this long, hollow tube at the end of the digestive tract creates and stores stool.
- Enteral nutrition Nutrition has given by a feeding tube, according to the Mayo Clinic. Enteral nutrition may be recommended for a limited period of bowel rest is needed to reduce inflammation, especially if medications aren’t doing the trick or in preparation for surgery.
- Extra-intestinal manifestations (EIMs) Crohn’s signs and symptoms that occur outside of your GI tract, in other parts of your body, according to the Crohn’s & Colitis Foundation. Up to 47 percent of people with an inflammatory bowel disease like Crohn’s experience EIMs, notes a study published in August 2015 in the journal Inflammatory Bowel Diseases.
- Fistula An abnormal connection that goes from your intestine to another place in the body, according to the Mayo Clinic. “In Crohn’s, there are several types of fistulas that can form,” says Lukin. “They can go from bowel to bowel, bowel to the bladder, bowel to the skin, rectum to the vagina, or from the anus or rectum out into the area around the perineum (the space between your anus and vulva or scrotum).”
- Gastrointestinal (GI) tract The entire length of your digestive system, from your mouth to your anus.
- Ileocolitis The most common form of Crohn’s, in which the disease affects the end of your small intestine along with your colon (large intestine), according to the Crohn’s & Colitis Foundation.
- Ileum The final segment of your small intestine, which empties into the large intestine.
- Immune system The body’s defense system for fighting off foreign intruders, such as bacteria and viruses. When you have IBD, your immune system doesn’t respond properly to the environmental triggers, causing inflammation of the GI tract, according to the Centers for Disease Control and Prevention.
- Immunomodulators A group of medications for Crohn’s disease that are aimed at suppressing the body’s immune system response so it cannot cause any further inflammation, according to the Crohn’s & Colitis Foundation. “[The medications] do this by preventing white blood cells, or chemical mediators of inflammation, from functioning properly,” says Lukin. But he cautions that in addition to halting an abnormal immune response, these drugs can also make you more susceptible to infection or cancer. Inflammation High immune system activity in an area when your body senses a threat. In people with Crohn’s, inflammation can cause symptoms and, over time, damage to your GI tract. “The more inflammation that is present, the more active the disease,” says Lukin. “Inflammation is the active part of the disease that is the originator of all the symptoms of Crohn’s.”
- Inflammatory bowel disease (IBD) A group of disorders in which there’s a chronic inflammation of your GI tract, according to the Crohn’s & Colitis Foundation. Crohn’s disease and ulcerative colitis are the two main forms of IBD.
- Intestine The intestine or bowel is a winding tube that extends from the stomach to the anus. It includes the small intestine and the colon (large intestine), and its main purpose is to digest food.
- Intestinal microbiome The genetic material of all the microbes — such as bacteria and fungi — living in your intestine. “The microbiome of a person with Crohn’s disease is very different from that of someone without the disease,” says Lukin. The makeup of the intestinal (gut) microbiome in people with IBD tends to fluctuate more than in other people, according to a study published in February 2017 in the journal Nature Microbiology.
- Mucosal inflammation Inflammation of the lining of your intestine, which can be treated with mucosal healing, an advanced treatment intended to prevent disease progression, according to the Mayo Clinic. Many people with Crohn’s who are in clinical remission, without any symptoms, still have active mucosal inflammation, says Lukin. “The goal of treatment is to heal the lining to the point where there is no visible sign” of active disease when your intestine is viewed through a scope, he explains.
- Ostomy Surgically changing the flow of waste (stool or urine) to the outside of your body. In people with Crohn’s, an ostomy may take the form of either an ileostomy (from your small intestine to your abdominal wall) or a colostomy (from your colon to your abdominal wall).
- Parenteral nutrition is given intravenously (by IV), according to the Mayo Clinic. It provides the nutrients your body needs while bypassing your gastrointestinal (GI) tract, and may be used during severe disease flares, if you’re extremely malnourished, or if you have short bowel syndrome — a disorder that can occur if you’ve had significant portions of your small intestine surgically removed.
- Rectum The lower part of the large intestine, in which stool is stored.
- Resection A surgical procedure that removes a diseased segment of your intestine, then reattaches the healthy ends, according to the Crohn’s & Colitis Foundation.
- Small intestine The longest part of the digestive system, which connects your stomach to your large intestine, and where most absorption of nutrients from your diet takes place.
- Stoma The opening on the outside of your body that’s created in ostomy surgery.
- Stricture A narrowing of your intestine that can develop because of chronic inflammation in Crohn’s, according to the Crohn’s & Colitis Foundation. “If you look at it like plumbing,” says Lukin, “it’s almost like a clogged pipe where the intestine becomes blocked or narrowed to a point where nothing can pass through.
- Ulcers Open sores that can develop anywhere in your GI tract because of chronic inflammation in Crohn’s, according to the Mayo Clinic.
CROHN’S & COLITIS AWARENESS
An Invisable Disease
Crohn’s and colitis are considered invisible illnesses because the diseases aren’t visible on the outside. So, while someone may look fine, their intestines may be inflamed and ulcerated, they may be in excruciating pain, and their immune system is essentially attacking itself.
Because Crohn’s and Colitis are invisible disabilities, some passengers may feel that they will be judged by asking a member of staff for help or having to spend time trying to explain their symptoms.
Imagine suffering from debilitating chronic pain. Every step you take causes discomfort, and it’s perpetually at the forefront of your mind. The internal battle you’re fighting takes mental and physical energy and just going through daily tasks can be debilitating. However, those looking at you may have no indication you’re suffering, let alone that you have a chronic disease. You suffer from an invisible illness.
WHAT IS AN INVISIBLE ILLNESS?
An invisible illness is one that does not exhibit externally visible signs or symptoms. Those with invisible illnesses and disabilities may have symptoms such as pain, fatigue, dizziness, weakness, or mental health disorders. Many of these conditions deeply impact the people suffering, but show no obvious signs to an outside observer.
By 2020, the US Department of Health and Human Services estimates that 157 million Americans will be afflicted with a chronic illness and the US Census Bureau estimates 96% of chronic illnesses are invisible. Invisible illnesses disproportionately impact women and many are not yet well understood by health care providers or the general public. This lack of understanding inevitably contributes to feelings of isolation and hopelessness for those suffering from such conditions.
CHALLENGES OF LIVING WITH AN INVISIBLE ILLNESS
In addition to the various symptoms of a chronic and invisible illness, people suffering from these illnesses can also experience frustration, guilt, exhaustion, and embarrassment.
For those diagnosed with an illness at a young age, the common stereotype that younger populations are supposed to be healthy makes it especially difficult. For those diagnosed later in life, many feel guilty they are unable to more actively participate in the lives of their families and be active with their children and grandchildren.
Invisible illnesses impact people in all aspects of their lives, personally and professionally. They can severely impact the ability to routinely work and may lead to social isolation and depression.
Nearly all of those experiencing an invisible illness have to deal with common misconceptions regarding their condition. Here are just a few of those most frequently dealt with.
- The way a person looks reflects how they’re feeling physically. Someone may look healthy, but that doesn’t mean they are.
- Invisible illnesses are ‘all in the person’s head.’ Keeping stress at a minimum may reduce symptoms of a chronic illness, but it doesn’t mean the root cause of the disease is psychological.
- Resting up will make people feel better. Just as people not suffering from chronic or invisible illness are unable to bank sleep (rest for a long period of time in order to recoup or “make-up” sleep or to expend extra energy), neither are those with chronic illnesses. The same amount of rest leading up to different events, on different days, may not yield the same results, as symptoms ebb and flow, often unpredictably.
- If a person suffering from a chronic illness is enjoying themselves, they must feel ok. Don’t assume a person who’s enjoying themselves, laughing, and participating in activities is symptom-free. Many people have learned to cope with their symptoms to participate in important events and activities, but that does not mean they are feeling well.
- Stress reduction techniques are a cure for chronic pain and illness. While these techniques may assist with symptom relief, they are not a cure-all.
- Being home all day is a dream lifestyle. Being home all day, but in constant pain and suffering from an invisible illness does not make for a dream lifestyle, regardless of location. Many people are often couch-bound or bed-bound due to extreme pain. They also experience boredom, as not being able to actively participate in the world around them can be frustrating and disappointing.
- Those in chronic pain are ‘drug seekers’. People in chronic pain are often misunderstood and mistreated by the medical community. They get labeled as “drug seekers” in emergency rooms and, as a result, are denied much-needed pain medication.
HOW TO SUPPORT OTHERS WITH INVISIBLE ILLNESSES
If you know someone with an invisible illness, there are several things you can do to support them. It’s important to remember everyone wants to enjoy life and no one wants to be a burden; however, people suffering from chronic and invisible illnesses do appreciate your support and understanding.
- Accept you are powerless to make them better. Your love and understanding are what they need.
- Take time to talk to them and learn about their illness. Ask questions about symptoms and treatments, and be patient. The more you learn, the better you’ll be able to understand and show empathy.
- Be with them when they need it and give them space when they want it. Many chronic illnesses become socially isolating, as people are house-bound or lose companions due to the lack of understanding around invisible illnesses. Being around and access may be one of the best support methods available.
- Try not to get frustrated. One of the biggest challenges associated with invisible illnesses is you get sick and then you continue to get sick, the cycle does not stop. At times, this may get frustrating to caregivers and it’s important for them to realize it’s normal for people suffering this way to be emotionally needy, distant, angry, or sad.
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Crohns Disease and bad weather
We know that Crohn’s disease can equal big gastrointestinal problems, but we don’t fully know what causes this condition. Genetics and the environment are thought to play roles, along with your body’s unique response to bacteria in your intestines. Another theory is a possible link between Crohn’s and the weather or climate where you live.
Researchers at Massachusetts General Hospital, who collected information on 175,912 women 15 to 30 years old, found that the incidence of Crohn’s disease increased significantly among those living in more northern latitudes. This was especially true for women in the older age range.
Experts aren’t sure what it is about Crohn’s and weather that could cause more cases up north, but one possible explanation is that there’s less sunlight or UVB radiation exposure in these areas, which in turn means that your body makes less vitamin D and doesn’t get as strong an immunity boost as it does in sunnier climes.
Another theory relates to health issues delineated by geography. “Generally areas farther from the equator are more developed countries, with lower incidences of gastrointestinal infections and parasites,” says Ghassan T. Wahbeh, MD, director of the Inflammatory Bowel Disease Program at Seattle Children’s Hospital and an associate professor of pediatrics and gastroenterology at the University of Washington School of Medicine. The theory is that in warmer areas closer to the equator, exposure to common GI bugs may mean the immune system is better able to fight off Crohn’s, “ in contrast to the unexposed gut immune system in cleaner environments,” he says.
Crohn’s and Weather: Putting the Forecast in Your Favor
Just as there’s no “one size fits all” nutrition plan for managing Crohn’s, there’s no ideal Crohn’s climate or geographic region that can rule out Crohn’s flares for everyone. Visit the online Crohn’s Forum, for example, and you’ll see that people’s experiences vary wildly, with some describing worse symptoms in winter and others saying summer heat causes them problems.
Individual experiences aside, however, there are some important warm weather Crohn’s tips to keep in mind, whether you live in the sun year-round or are planning a vacation escape.
“Staying in warmer climates mandates proper hydration, more so for patients with active disease and symptoms who are at risk of dehydration,” says Dr. Wahbeh. Kidney stones can also be a concern for people with inflammatory bowel disease and another reason to stay on top of your beverage consumption. On average, you should be drinking 80 or more ounces every day to stay hydrated.
Keep in mind that whether you’re experiencing bouts of diarrhea from Crohn’s disease or excessive sweating because of warm or hot weather, you’ll need to drink more water. Fever and vomiting can also contribute to dehydration. Signs to watch out for include dry mouth or mucous membranes, little or no urine or urine that’s dark yellow in color, a lack of tears, sunken eyes, and lethargy. There’s also the risk for coma in very serious cases.
People with an inflammatory bowel disease also have a greater than normal risk for skin cancer, according to Wahbeh. Experts aren’t certain how much of the risk is due to the disease itself and how much can be attributed to the side effects of the medications used to treat it. However, there’s no doubt that you should religiously apply a broad spectrum sunscreen and double up on sun protection by wearing wide-brimmed hats, sunglasses, and even clothing that can block UVA and UVB rays.
Living with Crohn’s disease has its challenges, but taking into account Crohn’s and weather factors, as well as following warm weather Crohn’s tips, living and playing in hot weather is certainly possible and perhaps even more pleasurable.
Wrap up stay safe and warm its going to be along 2021
all the best
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