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About Crohn's Disease

How to Really Talk to Your Doctor About Crohn’s Disease

It may be uncomfortable to talk about Crohn’s, but your doctor needs to know about your symptoms, including the nitty-gritty about your bowel movements. When discussing the disease with your doctor, be ready to talk about the following:

  • how many bowel movements you typically have per day
  • if your stool is loose
  • if there is blood in your stool
  • the location, severity, and duration of your abdominal pain
  • how often you experience a flare-up of symptoms each month
  • if you’re experiencing any other symptoms not related to your gastrointestinal tract, including joint pain, skin issues, or eye problems
  • if you’re losing sleep or waking up frequently during the night because of urgent symptoms
  • if you have had any changes in appetite
  • if your weight has increased or decreased and by how much
  • how often you miss school or work because of your symptoms

Try to make it a habit to keep track of your symptoms and how they’re affecting your daily life. Also, mention to your doctor what you’ve been doing to help manage symptoms — including what worked and what didn’t.

Food and nutrition

Crohn’s can interfere with your body’s ability to absorb nutrients, which means you may be at risk of malnutrition. It’s imperative that you take the time to talk about food and nutrition with your doctor.

You probably already know there are some foods that affect your stomach and should be avoided. Your doctor can give you tips on what foods are highly nutritious and also safe for Crohn’s disease. At your appointment, ask about the following:

  • what foods and beverages to avoid and why
  • how to create a food diary
  • what foods are beneficial for those with Crohn’s disease
  • what to eat when your stomach is upset
  • if you should take any vitamins or supplements
  • if your doctor can recommend a registered dietitian

Treatments and side effects

There’s no one-size-fits-all approach to treating Crohn’s disease. You’ll want to go over all of the available treatments with your doctor and what they recommend given your unique symptoms and medical history.

Medications for Crohn’s disease include aminosalicylates, corticosteroids, immunomodulators, antibiotics, and biologic therapies. They aim to suppress the inflammatory response caused by your immune system and to prevent complications. Each work in different ways.

Here are some things to ask your doctor about Crohn’s disease treatments:

  • what treatments are recommended for the type and severity of symptoms you have
  • why your doctor chose a particular medication
  • how long it takes to feel relief
  • what improvements you should expect
  • how often you have to take each medication
  • what the side effects are
  • whether the medication will interact with other medications
  • what over-the-counter drugs can be used to help with symptoms, such as pain or diarrhea
  • when surgery is needed
  • what new treatments are in development
  • what will happen if you decide to decline treatment

Lifestyle changes

Apart from changing your diet, changes in your daily life can also help control your symptoms and prevent flare-ups. Ask your doctor if there is anything they recommend changing, such as:

  • how often you should exercise
  • what types of exercises are beneficial
  • how to reduce stress
  • if you smoke, how to quit

Possible complications

You may already be familiar with the most common symptoms of Crohn’s disease, but you need to look out for several complications as well. Ask your doctor about each of the following complications so you can better prepare for them if they should arise:

  • joint pain
  • eczema
  • malnutrition
  • intestinal ulcers
  • intestinal strictures
  • fistulas
  • fissures
  • abscesses
  • osteoporosis as a complication of chronic steroid therapy

Emergency symptoms

Crohn’s disease symptoms can be unpredictable at times. It’s important that you’re able to recognize when your symptoms mean something serious.

Have your doctor review what symptoms or side effects of your treatment would be considered an emergency that requires immediate medical attention.

Insurance

If you’re new to a doctor’s practice, check to see that they accept your insurance. Additionally, certain treatments for Crohn’s disease are expensive. So it’s important to make sure it’s all covered so as not to cause a delay in your treatment plan.

Ask about programs from pharmaceutical companies that help reduce your copays and out-of-pocket expenses for your medications.

Support groups and information

Consider asking your doctor or healthcare team for the contact information for a local support group. Support groups can be in person or online. They aren’t for everyone, but they can provide emotional support and a wealth of information about treatments, diet, and lifestyle changes.

Your doctor might also have some brochures or other printed material that you can take with you or some recommended websites. It’s important that you don’t leave your appointment feeling confused about anything.

Follow-up appointment

Last but not least, schedule your next appointment before you leave your doctor’s office. Request the following information before you go:

  • what symptoms your doctor wants you to pay attention to before your next appointment
  • what to expect for next time, including any diagnostic tests
  • if you need to do anything special to prepare for a test in your next visit
  • how to pick up any prescriptions and questions to ask the pharmacist
  • what to do in case of an emergency
  • what is the best way to contact your doctor, whether it be by email, phone, or text
  • if you had any diagnostics tests done, ask the office staff when the results will come in and whether they’ll call you directly to follow up

The bottom line

Your health is a priority, so you need to be comfortable working with your doctor to get the best care possible. If your doctor isn’t giving you the care, time, or information that you need, you might want to see a new doctor.

It’s perfectly normal to seek a second or third opinion — or more — until you find the right fit

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About Crohn's Disease

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.

COMMON MISCONCEPTIONS

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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About Crohn's Disease

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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About Crohn's Disease

Still Tired liveing with crohns

When my Crohn’s disease is active, my fatigue can be debilitating. Sometimes I’m forced to stop answering phone calls because I literally don’t have the energy to construct sentences. I don’t allow myself to drive because it doesn’t feel safe. I’m basically unable to do anything except the bare minimum, and when I come out on the other side I feel like I’ve been in the deepest fog.

How can I be so tired?

After experiencing fatigue like this on and off for quite a while, I began to wonder how I could possibly be SO tired. I was ‘sleeping’ ten to twelve hours a night and taking a nap during the day. What more could my body possibly want? I wasn’t working. I wasn’t moving much. In fact, I wasn’t using any more strength than necessary, and yet, it still felt like too much.

Anyone with IBD knows that when you’re sick, it often feels like more than just stool emptying from your bowels. It feels like life is emptying out too.

Fatigue and mental health

I found the fatigue contributed to my anxiety and depression, affecting my mental health too. It seemed like I was trapped in this awful cycle and all I could do is come up for air between episodes.

During that time, I took prescription sleep medication, I worked with a sleep doctor, and underwent multiple normal sleep studies. I even followed suggestions on reducing screen time, creating sleep hygiene and more, but no matter what, I felt exhausted all of the time.

Sleep versus rest

This was when I learned the difference between being asleep, and getting rest. Being in bed, tossing and turning, waking up during the night – they all impact our ability to achieve deep sleep cycles characterized by faster breathing, a faster pulse, and rapid eye movements, or REM. There were times that my body may have been unconscious, but it most certainly wasn’t at rest.

It became clear to me that I had to learn how to dedicate time to conscious rest when I was awake. To be honest, this felt awkward and like something I was embarrassed about. Have you ever sat down to do something like this?

Changes I made

There were three changes I made that over time have significantly impacted my levels of fatigue, and I’d really like to offer them as suggestions to anyone who is struggling.

  1. Scrolling through social media, even while laying in bed, doesn’t count as resting. When you brain is actively thinking about things you want, need, or are missing out on, it impacts your body’s ability to rest. Schedule in some breaks to put your phone down.
  2. Guided imagery and meditation are real things that relax your mind AND your body. I rely on the Calm app, but there are others out there as well which offer you these services right from your phone. Quieting your brain quiets your body in a real, lasting way.
  3. Aromatherapy – certain scents are tied to physical relaxation. Whether you purchase a linen spray, light a candle, burn incense or diffuse essential oils, or take a bath with bubbles or salts or bombs, aromatherapy draws upon the healing powers of the leaves, flowers, stems, bark, roots or petals of plants to stimulate the natural healing action of both your body and your mind.
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