You have Crohn’s disease. Maybe you’ve had it for a long time, or maybe you’ve just been diagnosed. You’ve heard and read a lot about it, but you don’t really know what to expect.
The first thing to do is to ask your doctor. He can help you understand your condition and provide answers to your questions. It’s a good idea to learn all you can about it.
What Happens to Your Body?
Crohn’s disease is a type of inflammatory bowel disease. That means that your body’s immune system attacks and damages your bowel or gastrointestinal system.
It’s a chronic, meaning long-term, condition that gets in the way of your body’s ability to take in important nutrients. It can also affect the way you digest food and get rid of waste.
Crohn’s can involve any part of your gut. But the ileum, the last part of your small intestine, is most commonly affected.
Because of inflammation, you might have some of these symptoms:
- Diarrhea or frequent, watery bowel movements
- Urgent bowel movements
- Trouble having bowel movements
- Bleeding from your rectum
- Pain or cramping in your abdomen, or belly
- Weight loss
Other parts of your body, like your joints, skin, or eyes, can be affected, too.
Symptoms can come and go. You may have periods of time when you feel fine. These times might be followed by flare-ups of the condition.
Remission also is possible. With Crohn’s, remission is sometimes thought to take place when symptoms go away and ulcers in the colon begin to heal.
What You Can Do
You should be able to do just about anything. But you may need to make some adjustments.
Each person is different. Your Crohn’s disease might:
- Affect a large part of your gastrointestinal system or only a small part
- Be mild, moderate, or severe
- Go long periods without symptoms or flare-ups
- Be fairly easy to control, or it may be very difficult
- Go into remission
Depending on the way Crohn’s affects you and your ability to manage it, you may have some challenges.
Your symptoms. Although most people with Crohn’s are able to have active lives, symptoms and flare-ups may cause you to miss work, school, or other activities – even if you stick to your treatment plan.
Your day-to-day activities. You may want to plan your activities with your Crohn’s in mind. For example, know where the closest bathroom is.
Your diet. Stay away from some foods if they make you feel worse. For instance, if milk products or greasy foods cause diarrhea, don’t eat them.
Your mood. Crohn’s disease, like other chronic conditions, may affect your mood. You may feel more stressed or depressed at times. You may have pain, which also affects your emotions. If your condition starts to get to you, look into seeing a counselor and joining a support group.
If you’re female, Crohn’s could affect your ability to get pregnant. If it isn’t well-controlled, it may cause problems once you are pregnant. Your doctor may recommend a C-section if you have certain complications.
Crohn’s causes two types of complications:
- Local, which involve the intestinal tract
- Systemic, which affect your entire body
Local complications of Crohn’s include:
- Abscess: This pocket of pus results from a bacterial infection. It can form on your intestinal wall and bulge out. Or you might get one near your anus that looks like a boil. You’d notice swelling, tenderness, pain, and fever.
- Bile salt diarrhea: Crohn’s disease most often affects the ileum, the lower end of your intestine. This part usually absorbs bile acids, which your body creates to help it absorb fat.
- Fissure: Painful tears in the lining of the anus. They can cause bleeding during bowel movements.
- Fistula: Sores or ulcers can turn into openings that connect two different parts of your intestine. They can also tunnel into nearby tissues (bladder, vagina, skin).
- Malabsorption and malnutrition: The disease affects your small intestine, the part of your body that absorbs nutrients from food. After you’ve had it for a long time, your body may no longer be able to make the most of what you do eat.
- Small intestinal bacterial overgrowth (SIBO): Your gut is full of bacteria that help you break down food. When this happens higher up in your digestive tract than normal, you can get gas, bloating, belly pain, and diarrhea.
- Strictures: These narrowed, thickened areas of your intestinal tract result from the inflammation that comes with Crohn’s. They can be mild or severe, depending on how much of your intestine is blocked. Symptoms include cramping, abdominal pain, and bloating.
Systemic complications are often called extraintestinal. Some of the most common ones include:
Arthritis: Joint inflammation — which leads to pain, swelling, and a lack of flexibility — is the most common complication. There are three types of arthritis that sometimes come with Crohn’s:
- Peripheral: This type affects large joints in your arms and legs, like your elbows, knees, wrists, and ankles.
- Axial: This type affects your spine or lower back (the doctor will call it your sacroiliac joint).
- Ankylosing spondylitis: This more serious type of spinal arthritis is rare among people with Crohn’s, but it can happen. Besides causing arthritis in your back, it can lead to inflammation in your eyes, lungs, and heart valves.
Bone loss: Medications like steroids can lead to bone loss, a condition known as osteoporosis. They can:
- Stop your body from absorbing calcium, which your body needs to build bone
- Make your body get rid of calcium when you pee
- Boost production of cells that break down bone
- Lower the number of cells that help form bones
- Lower your body’s output of estrogen. Estrogen also helps build bone.
The proteins that cause inflammation to change the pace at which old bone is removed and new is formed.
Vitamin D deficiency. If your body can’t absorb vitamin D because of Crohn’s damage to the small bowel or small bowel resection, you’re less likely to be able to absorb calcium and make bone.
Crohn’s may also affect your body’s ability to absorb other fat-soluble vitamins, iron, and copper.
Skin problems: These are the second most common systemic complication. Those most often linked to Crohn’s disease include:
- Erythema nodosum: These small, tender, red nodules usually show up on your shins, ankles, and sometimes your arms.
- Pyoderma gangrenosum: These pus-filled sores often follow an injury or other skin trauma. They often appear on your legs but can show up anywhere.
- Skin tags: These small flaps of skin are common in people with Crohn’s, especially around the anus or hemorrhoids.
- Mouth ulcers: You might hear them called canker sores. They form between your gum and lower lip or along the sides and bottom of your tongue.
Eye problems: Over time, the inflammation from Crohn’s, or sometimes the other complications that come with it, can affect your eyes. Common conditions include:
- Episcleritis: Inflammation of the area just below the conjunctiva (the clear tissue that covers the inside of your eyelids and the white of your eye) is the most common complication of Crohn’s. It can affect one eye or both. You’ll notice pain, itching, burning, and intense redness, but it won’t hurt your vision.
- Scleritis: This condition causes a constant pain that gets worse when you move your eyes.
- Uveitis: This is a painful inflammation of the uvea, the middle layer of your eye. It can cause blurry vision, light sensitivity, and redness.
Kidney problems: These organs can be affected by Crohn’s because they play a role in processing waste and are near your intestines. Potential issues include:
- Kidney stones: They’re a common problem with Crohn’s because your body has a hard time absorbing fat. It binds to calcium and leaves a salt called oxalate that gets absorbed into your kidneys and can turn into stones.
- Uric acid stones: These kidney stones form due to dehydration and a process called metabolic acidosis in which the balance of acids and bases in your blood gets thrown off.
- Hydronephrosis: This happens when the ileum (where your small intestine meets the large) swells from Crohn’s and puts pressure on your ureter, the tube that carries urine from your kidney to your bladder. When urine can’t drain the way it should, your kidney swells and scar tissue can form.
- Fistulas: In addition to forming within your intestines, fistulas can also develop between the intestine and other organs, like the bladder or ureter.
Liver problems: Your liver processes everything you eat and drink. It can get inflamed as a result of Crohn’s treatment or the disease itself. You’re only likely to notice low energy and fatigue unless you develop a more serious problem. Among the most common issues:
- Fatty liver disease: When your body doesn’t process fats as well, they can build up in your liver. Steroids can help.
- Gallstones: Your gallbladder stores bile, a liquid that helps your body dissolve fats. When Crohn’s affects the terminal ileum (where your small intestine meets the large intestine), it can’t process bile salts, which help cholesterol dissolve in bile. When that happens, the cholesterol can form into stones that block the opening between the liver and the bile duct, which sends bile down to your intestines.
- Hepatitis: Crohn’s disease can cause chronic (long-term) liver inflammation and primary sclerosing cholangitis.
- Pancreatitis: Inflammation of the pancreas can result from gallstones and from medications. It can cause pain, nausea, vomiting, and fever.
Physical development problems: Crohn’s can start at any age. When kids get Crohn’s, parents are likely to notice:
- Growth failure: Kids with Crohn’s are likely to be shorter and weigh less than those without. They may stop getting taller before symptoms start.
- Delayed puberty: Kids with Crohn’s are likely to start puberty later than their friends. Causes include malnutrition and lower fat mass, and interactions between proteins that cause inflammation and the endocrine system, which governs hormones.
What’s the Prognosis?
Most people with Crohn’s disease will have periods of disease activity followed by periods of remission.
Doctors say if these things apply to you at diagnosis, your Crohn’s may be more severe if you:
- Are younger than 40
- Have perianal or rectal disease
- Are taking steroids first thing
- Have a low education level
Some general facts:
- A small number of people will go into a long remission right after their first diagnosis.
- Many will get strictures or penetrating disease about 10 years after disease starts. Most will need surgery.
- Up to 80% of people with Crohn’s will be hospitalized at some point.
- Most people have symptoms that come and go, but a small number will either have continuous, active disease or prolonged remission.
- About half the people in remission who have surgery will have a recurrence at the 5-year mark.
- Some people have a more aggressive form of the disease that causes recurring obstructions or perforations. These people will need more surgery.
How Does Crohn’s Affect Life Expectancy?
There are a lot of things to consider, like the fact that Crohn’s affects everyone differently, and no two people have the exact same level of medical careBut doctors estimate that higher odds of death from Crohn’s range from zero to five times that of people who don’t have it.
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
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.
- 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.
- 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.
- 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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