Understanding the diagnosis of Crohn’s disease.
When your doctor told you that you had a disease called Crohn’s disease, it’s likely that you had never heard of it (in fact, most people are not familiar with Crohn’s disease). But now you have it, and to make matters worse, your doctor has told you that Crohn’s disease cannot be cured.
If you are feeling overwhelmed or scared, these are natural reactions. You’re likely to ask your doctor a lot of questions, often starting with, “What is Crohn’s disease?” . You will also want to know how you got Crohn’s disease and, most importantly, how it will affect your life now and in the future. For example, you may want to know.
1. will I be able to work, travel and exercise after I get the disease?
2. Do I need a special diet?
3. Do I need surgery?
4. How will Crohn’s disease change my life?
What is Crohn’s disease?
Crohn’s disease is named after Dr. Burrill B. Crohn, who, along with colleagues Oppenheimer and Ginsburg, published a landmark paper in 1932 that described the various features of Crohn’s disease. Crohn’s disease and its related condition called ulcerative colitis are the two most prominent diseases classified as inflammatory bowel diseases (IBD). Both Crohn’s disease and ulcerative colitis can cause diarrhea (sometimes bloody stools) and abdominal pain. It is because the symptoms of these two diseases are so similar that it can sometimes be difficult for doctors to differentiate between them when making a diagnosis. In fact, in about 10 percent of cases, the diagnosis of Crohn’s disease or ulcerative colitis cannot be made.
Ulcerative colitis is confined to the colon, while Crohn’s disease can involve any part of the entire GI tract, from the mouth to the anus. It can invade most of the small intestine (ileum) and the beginning of the colon. Crohn’s disease can involve the entire length of the intestine, and the diseased intestine can alternate with the normal healthy intestine in a phenomenon called “jumping”. In contrast, ulcerative colitis lesions are uniformly and continuously distributed and involve only the superficial layers of the colon.
What does “chronic” mean?
No one knows exactly what causes Crohn’s disease or ulcerative colitis, nor can anyone predict how it will affect a person once it is diagnosed. Some people can go years without any symptoms, yet others will have frequent, sudden flare-ups. But one thing is certain: like ulcerative colitis, Crohn’s disease is a chronic disease.
Chronic disease is a state that continues to progress. It can be managed with treatment, but it cannot be cured. This means that the disease is long-lasting but not fatal. Most people with Crohn’s have an unaffected life expectancy and live equally full and colorful lives.
The more you know, the more comfortable you will be in fighting Crohn’s disease!
Introduction to the digestive tract.
Although the digestive tract is an important part of our body, most people are not familiar with it. Let’s take a brief look at it.
The GI tract begins in the mouth, followed by a curved passage several meters long, and ends in the rectum. In between are a number of organs that play a role in the digestion and transportation of food. First is the esophagus, which is a narrow tube connecting the mouth and the stomach, followed by the stomach, then the small intestine, the colon and the rectum.
Subtypes of Crohn’s disease and associated symptoms.
The symptoms and potential complications vary depending on which part of the digestive tract is involved, which is why you need to know which part of your intestine is involved in Crohn’s disease. Your doctor may also be able to tell you which type of Crohn’s disease you have based on the main part of your intestine that is involved. The following are the five types of Crohn’s disease.
1. ileocolitis: the most common type of Crohn’s disease, involving the ileum and colon; symptoms include diarrhea and pain in the right lower or middle abdomen, mostly accompanied by severe weight loss.
2, ileitis: involving the ileum; symptoms are the same as ileocolitis, complications may include intestinal fistula and right lower abdominal abscess.
Gastroduodenal Crohn’s disease: involves the stomach and duodenum (the first part of the small intestine); symptoms include poor appetite, weight loss, and nausea, and vomiting may indicate obstruction of a narrow segment of the intestine.
4. jejunoileitis: involves the jejunum (upper part of the small intestine); symptoms include mild to severe abdominal pain, postprandial abdominal pain, and diarrhea, and there may also be intestinal fistulas, which are passages between intestinal loops or between the intestine and other organs.
5. Crohn’s disease (granulomatous) colitis: only the colon is involved; symptoms include diarrhea, rectal bleeding and perianal disease (perianal abscesses, fistulas, perianal ulcers), with skin lesions and joint pain being more common.
Who is at risk for developing Crohn’s disease?
1.4 million Americans have either Crohn’s disease or ulcerative colitis, about half of each disease. The following is a concise set of data.
1. approximately 30,000 new cases of Crohn’s disease and ulcerative colitis are diagnosed each year.
2. the majority of patients with Crohn’s disease are young, mostly between the ages of 15 and 35
3. However, Crohn’s disease can also occur in people aged 70 years or older and in children; in fact, 10% of these patients or about 100,000 patients are under the age of 18.
4. the proportion of men and women among patients is similar
5. Caucasians are more susceptible to ulcerative colitis than other ethnic groups.
6. Jews (most of whom are of Eastern European origin) are more likely to have Crohn’s disease.
7. Crohn’s disease and ulcerative colitis are highly prevalent in developed countries, cities and northern regions.
Genetic factors.
Researchers have found that there is a tendency for Crohn’s disease to run in families, and in fact, up to 20% of people with Crohn’s disease have first-degree relatives (i.e., cousins/sisters or closer) who also have Crohn’s disease or ulcerative colitis.
So there is a clear genetic component to Crohn’s disease. Researchers are already actively exploring related genes that could control the inheritance of Crohn’s disease. A major breakthrough was recently made by a group of inflammatory bowel disease researchers who identified the first gene associated with Crohn’s disease, called the NOD2 gene. This gene is subject to abnormal mutations that limit resistance to bacteria and is twice as common in Crohn’s disease patients as in the general population. To date there is no method to screen for people with mutations in this gene, nor is there a way to predict which family members are susceptible to Crohn’s disease. It is likely that there is more than one gene associated with Crohn’s disease, and researchers will use new technologies to study these genes more clearly.
Crohn’s disease has a tendency to run in families, so genes play a role.
What causes Crohn’s disease?
As we mentioned, no one knows the exact cause of Crohn’s disease, but one thing is clear: You don’t have Crohn’s disease because of something you did or because no one infected you with it. So, please do not blame yourself for your illness.
So what are the possible causes of the disease? Most experts believe that Crohn’s disease is the result of a multifactorial action, i.e. many factors work together to cause the disease, including the following three main factors.
Genes, an inappropriate immune response of the body, and some kind of stimulus from the external environment.
The inheritance of one or more genes sets the stage for the development of Crohn’s disease, which then requires some trigger in the environment to cause the disease to develop, which can be viral or bacterial or something else. Whatever the cause, it will activate the body’s immune system, which combats the external invaders, and this is where the inflammation begins. Unfortunately, the immune system will not shut down, thus allowing the inflammation to continue, eventually damaging the colon and causing symptoms.
What are the signs and symptoms of Crohn’s disease?
Persistent diarrhea (loose stools, watery stools or more frequent stools), abdominal cramps, fever, rectal bleeding: these are the typical symptoms of Crohn’s disease, but they vary from person to person and from time to time. Poor appetite and its corresponding weight loss may also be present, and malaise is a more common complaint. Children may have delayed growth and reproductive development.
Some patients may have anal fissures, which can cause pain and bleeding, especially during bowel movements. Inflammation of the bowel can also cause an enterocutaneous fistula, which is a passage between the bowel loops or between the bowel and other organs such as the bladder, vagina, or skin. Most intestinal fistulas occur in the perianal area, when you will notice mucus, pus or stool draining from the fistula.
Symptoms can be mild or severe, and because Crohn’s disease is chronic, patients will experience a sudden, acute phase of significant symptoms, followed by a remission phase when symptoms disappear and health improves again. Overall, however, most people with Crohn’s disease will still have a full, vigorous life.
Extra-intestinal symptoms.
In addition to symptoms in the digestive tract, Crohn’s disease has some signs and symptoms in other organs, such as: red and itchy eyes, mouth ulcers, swollen and painful joints, skin damage, osteoporosis, kidney stones, etc. Hepatitis and liver cirrhosis are less common. These are called extra-intestinal symptoms of Crohn’s disease, but some patients go to the clinic with extra-intestinal symptoms as the first symptoms, and sometimes these symptoms can appear just before the sudden onset of the disease.
Range of symptoms.
Milder symptoms are present in about half of patients with Crohn’s disease, while others suffer severe abdominal pain, bloody stools, nausea, and fever. These symptoms are mostly temporary, and during remission patients may not be sick at all, although symptoms eventually reappear, and remission may last for months to years. Because the course of Crohn’s disease is unpredictable, it is difficult for doctors to evaluate whether treatment at a particular stage is effective.
Diagnosis of Crohn’s disease.
How does a doctor make a diagnosis of Crohn’s disease? The first step is to obtain a complete family history of the patient as well as a history of past illnesses, including questions that address the details of the symptoms; the second is a physical examination. A number of other conditions can cause diarrhea, abdominal pain and even rectal bleeding, so your doctor will need to rely on a variety of tests to rule out other conditions, such as infectious enteritis. Stool tests can rule out diarrhea caused by bacterial, viral and parasitic diseases, and can also indicate the presence of blood in the stool. Blood work can diagnose the presence of anemia, which often indicates colonic or rectal bleeding. In addition, if the white blood cell count is elevated, this indicates the presence of an infection somewhere in the body.
Colonoscopy.
The second step is an examination of the colon itself through a sigmoidoscopy or colonoscopy. A sigmoidoscope is a flexible instrument that the doctor can use to insert into the rectum and lower part of the colon to see if there is inflammation in these areas and to what extent. A colonoscope is similar to a sigmoidoscope and has the advantage of looking at the entire section of the colon. With these instruments, your doctor can look at inflammation, bleeding or ulcers in the bowel wall and determine the extent of the lesion. During the exam, your doctor can also take a biopsy and send it to a pathologist for further testing to distinguish Crohn’s disease from other conditions that can cause rectal bleeding, such as ulcerative colitis, intestinal diverticula and cancer.
Drug treatment.
As we mentioned earlier, there is no cure for Crohn’s disease, but there are still treatments available to control it. The mechanism of treatment is to inhibit the abnormal inflammation of the intestinal lining, which leads to intestinal repair and relief of symptoms such as diarrhea, rectal bleeding and abdominal pain. The two basic goals of treatment are to eliminate symptoms and to maintain a symptom-free state. Some of the symptomatic therapeutic agents may be the same, but they differ in dose and duration of treatment. There is no treatment that can be applied to any patient with Crohn’s disease, as each patient is different and their treatment must be individualized. Some drugs have been used for several years, and others are recent breakthroughs in treatment. The most commonly used drugs are divided into five main categories.
1. Aminosalicylates: These drugs are compounds similar to aspirin and contain 5-aminosalicylic acid (5-ASA), such as salazosulfapyridine, mesalazine, olsalazine and balsalazide. These drugs can be administered orally or rectally and modulate the body’s ability to initiate and maintain inflammation. It is effective in mild to moderate Crohn’s disease and can also be used to prevent recurrence of the disease.
2. Corticosteroids: These drugs, which include prednisone and prednisolone, also work by regulating the body’s ability to initiate and maintain inflammation. In addition, it is able to suppress the immune system. It can be administered orally, rectally or intravenously for moderate to severe Crohn’s disease and is also effective for short-term control of acute attacks, but is not recommended for long-term or maintenance administration due to its side effects. Budesonide is a non-systemic steroid used to treat mild to moderate Crohn’s disease, and it has fewer side effects. Your doctor may add other drugs to maintain treatment when there is a risk of disease recurrence with withdrawal of steroid drugs.
3. Immunomodulators: This group of drugs includes azathioprine, 6-mercaptopurine, and cyclosporine. These drugs control the further development of inflammation by suppressing the immune system and are often given orally; they are mostly used in patients for whom aminosalicylates and corticosteroids are ineffective or less effective; they may also eliminate dependence on corticosteroids and may play a role in maintaining disease remission; they take 3 months to take effect.
4. Biologic therapy: This is the newest class of drugs for the treatment of inflammatory bowel disease and includes infliximab. It is indicated for patients with moderately to severely active Crohn’s disease who are not sensitive to conventional drugs and may reduce the incidence of intestinal fistulas. Infliximab is an antibody that binds to tumor necrosis factor-alpha (TNF-alpha), a protein in the immune system that plays an important role in the development of inflammation. This drug has a rapid onset of action, is effective in promoting mucosal healing and reducing postoperative recurrence, can reduce to discontinue steroid hormones, is also a maintenance drug in remission, and is effective in reducing surgical and hospitalization rates. Other biological agents are still in clinical trials, adalimumab has been approved for the treatment of rheumatoid arthritis, and natalizumab can be used to treat multiple sclerosis.
5. Antibiotics: Methotrexate, ciprofloxacin and other antibiotics may be effective when Crohn’s disease is complicated by infection (e.g., abscess formation).
Surgical treatment.
Many patients do better with medication and do not need surgery, but three-quarters of patients will need surgery in their lifetime. Surgery becomes necessary when symptoms are not controlled with conservative medications, and surgery can also repair intestinal fistulas and fissures. Another indication for surgery is the development of other complications such as intestinal obstruction or intestinal abscesses. Typically, the diseased bowel and any associated abscesses are surgically removed, and the remaining two ends of the normal bowel section are then anastomosed. However, Crohn’s disease can often recur at or near the anastomosis, so surgery can make it difficult to cure the disease. Ileostomy is indicated for colonic Crohn’s disease. When the surgeon removes the colon, the small intestine is pulled to the skin and stomaed so that feces can be emptied into a bag that hangs outside the abdomen. This type of stoma is often used in patients who cannot be anastomosed because of lesions in the rectum. The overall goal of the procedure is to preserve the bowel and improve the patient’s quality of life. Surgery can eliminate symptoms and maintain remission for a period of time, but Crohn’s disease cannot be cured by surgery.
Role of nutrition.
You may ask if eating certain foods caused Crohn’s disease, and the answer is: no. However, once you have the disease, watching your diet can help relieve your symptoms, replenish your nutrition and promote repair. For example, when you’re in the acute phase of the disease, you may find that lighter, softer foods cause less discomfort than spicy or high-fiber foods, and eating smaller, more frequent meals can also be beneficial.
Maintaining good nutrition is important for the treatment of Crohn’s disease. Adequate nutrition is necessary for chronic disease, especially this disease. Abdominal pain and fever cause poor appetite and weight loss, and diarrhea and rectal bleeding can cause the body to lose fluids, nutrients and electrolytes, the balance of which plays an important role in maintaining body function.
This does not mean you have to eat certain foods or avoid certain foods. Most doctors recommend a balanced diet to avoid malnutrition, with the exception of limiting dairy products for those who are lactose intolerant and caffeine for those with severe diarrhea. A healthy diet should contain a variety of food groups. Meat, fish, poultry and dairy products (if tolerated) are sources of protein, bread, cereals, starches, fruits and vegetables are sources of carbohydrates, margarine and cooking oils are sources of fats, and daily multivitamin supplements can help fill in food deficiencies.
Probiotics and prebiotics.
Researchers have begun to look for other drugs that have gut-protective effects in people with Crohn’s disease, and probiotics and prebiotics are one of them.
What are they substances? Probiotics are beneficial microorganisms that play an important role in maintaining a healthy gastrointestinal tract. There are about 400 different types of probiotics in the human digestive system that control the growth of pathogenic bacteria. Achieving a balance between probiotics and pathogenic bacteria is key, and if a decrease in probiotics causes this balance to become imbalanced, pathogenic bacteria can overgrow and eventually cause diarrhea and other digestive symptoms. If this happens in patients with an already compromised GI tract, such as those with Crohn’s disease, the symptoms can be particularly severe. There is growing evidence that probiotic applications (which can be capsules, powders, liquids and tablets) can be an alternative option for treating inflammatory bowel disease, especially in helping to maintain the remission process.
Prebiotics are non-digestible food components that provide nutrients to probiotic bacteria in the gut to promote their proliferation.
Role of stress and emotions.
Some people believe that specific personality types contribute to the development of Crohn’s disease or other inflammatory bowel diseases, which is actually false. However, because the mind and body are closely related, mental stress can affect the symptoms of Crohn’s disease or any other chronic disease. Even though some patients may experience a relapse of Crohn’s disease after a traumatic experience, there is still no evidence that mental stress can cause Crohn’s disease. Mental distress is likely a response to the symptoms of the disease itself, so patients with Crohn’s disease should have the understanding and emotional support of their families and physicians. Although formal psychotherapy is not necessary, some patients can be helped by talking with a specialist who has knowledge about inflammatory bowel disease or general chronic disease.
Advance planning.
There are many ways to cope with the disease. For example, sudden diarrhea or abdominal pain can make a person fear being in public places, but this fear is not necessary; all you need to do is prepare in advance: find restroom locations in restaurants, malls, theaters and transportation. It is also a smart idea to carry extra underwear or toilet paper with you. If you are going to be away for an extended period of time, you should tell your doctor beforehand. Your travel plan should include plenty of medication and the generic name of the medication in case you run out or lose it, as well as the name of a local doctor in the area you are traveling to.
Living normally with Crohn’s disease.
Perhaps the most difficult time for a person with Crohn’s disease is the moment when you first learn of your illness, a fact that will not always be at the forefront of your thoughts as time passes. In the meantime, don’t hide your disease from your family, friends and colleagues, discuss it with them and let them help support you.
Try to carry on with your daily life and continue to participate in the activities you did before you became ill. You don’t have to abandon what you love or dream of doing. Learning coping strategies from others and sharing your knowledge, taking your medications as prescribed (even when you feel great), and staying positive are the basics and the best prescriptions.
Although Crohn’s disease is a serious and chronic condition, it is not fatal. Living with it can be challenging: you have to take medications and sometimes be hospitalized, but you need to remember that most people with Crohn’s disease can still have a full life. It’s also important to remember that maintenance medication in remission can significantly reduce the recurrence of Crohn’s disease, and that most patients are asymptomatic in remission.
Looking ahead.
Laboratories around the world are dedicated to the scientific study of Crohn’s disease, and new treatments continue to emerge. research sponsored by the CCFA has made tremendous progress in immunology, microbiology and genetics. Through continued hard work in research, we will know more and eventually find a cure for Crohn’s disease.