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Learn more about the symptoms, care and treatment of Crohn's disease.
This is not meant to be an exhaustive review on the topic, but an introduction to a complex condition with answers to some of the most frequently asked questions. Please contact your provider with any specific questions you may have.
Crohn's disease is a chronic disorder causing inflammation of the gastrointestinal (GI) tract. Although any part of the GI tract from the mouth to the anus can be affected by Crohn's disease, the area where the small intestine (terminal ileum) and colon (cecum) meet is the site most commonly involved. The inflammation can lead to a variety of symptoms.
Currently, there is no cure for Crohn's disease. The goals of therapy are to get you feeling back to normal, keep you feeling normal, and reduce the number of flare-ups so you can live without limitations related to the disease.
Crohn's disease affects an estimated 600,000 – 1.5 million people in the United States. Males and females are evenly affected. Crohn's disease is more common in more developed countries but is becoming increasingly common in developing countries as well. Crohn's disease also appears to be more common in urban rather than rural areas and in areas farther from the equator.
Although Crohn's disease can develop at any age, it most commonly develops between ages 20 to 30. About 25 percent of patients are diagnosed before the age of 20. Although less common, elderly patients can still develop Crohn's disease.
Crohn's disease tends to run in certain families, and up to 20 percent of patients will have a first-degree relative (parent, sibling, or child) with the disease.
Crohn's is more common among Caucasians, particularly Ashkenazi Jews, but is being identified more among Hispanics, Asians, and African Americans.
The cause of Crohn's disease is unclear and is an area of ongoing research. Factors like a person's genetic makeup, environment and immune system are all thought to play a role in the development of the disease. Current theories suggest Crohn's disease is caused by an overreaction by the immune system to normal bacteria in the colon, increasing the inflammatory cells in the intestines. The immune system then does not properly shut itself off, resulting in the chronic inflammation that is characteristic of Crohn's disease. This is why many of the current treatments for Crohn's disease focus on suppressing the body's overactive immune response.
Crohn's disease symptoms can vary from mild to severe. Crohn's disease can also affect other parts of the body, including the joints, skin, liver, and eyes. These are called extraintestinal manifestations and are rarely the first symptoms of Crohn's disease.
In children, Crohn's disease can lead to delayed development and growth.
Approximately one-third of Crohn's patients will develop symptoms around the anus called perianal disease. This includes skin tags, fissures (tears in the anal skin), fistulae (abnormal connection between the intestine and the anus), or abscesses (collections of pus or infected fluid).
No diet has been identified as a direct cause of Crohn's disease. However, there are dietary factors that may increase the risk of developing Crohn's disease. Diets high in sugar, refined carbohydrates and fat and diets low in fiber, fruits and vegetables are all more common in patients diagnosed with Crohn's disease.
Once you are diagnosed with Crohn's disease, we recommend a healthy, balanced diet. Some patients with Crohn's disease who have narrowings or strictures in their intestines will have to make dietary modifications to avoid high residue foods like raw vegetables and fruit with skins. Be sure to talk to your doctor before making major changes in your diet. Unnecessarily restricting fruits and vegetables can lead to nutritional deficiencies. Dairy products should only be restricted if you have known lactose intolerance.
A number of nutritional deficiencies can develop in patients with active Crohn's disease.
Symptoms of Crohn's disease can be seen in many other conditions.
Infection: bacterial, viral, or parasitic
Ischemia: low blood flow to the small intestine or colon, usually seen in older patients
Medication use: non-steroidal anti-inflammatories (NSAIDs), antibiotics, birth control pills
Diverticulitis: infection of a diverticulum (outpouching of colon) that causes left sided abdominal pain and fever
Appendicitis: inflammation of the appendix that causes right lower abdominal pain and fever
Irritable bowel syndrome
Lactose intolerance: sensitivity to lactose which can cause diarrhea, abdominal cramps and bloating
Celiac disease: an inflammatory reaction to gluten (wheat) which can cause diarrhea and bloating
Different types of cancer, including lymphoma
Diseases that affect other organs in the abdomen also need to be considered such as:
Pelvic inflammatory disease
Ruptured ovarian cyst
Bladder or kidney infections
Some patients might have Crohn's disease AND one or more of the conditions listed above. Even in patients with known Crohn's disease, it is important to remember that not all abdominal symptoms are related to Crohn's. Patients with Crohn's disease are just as susceptible or even more susceptible to other GI conditions as patients without Crohn's disease.
One of the more common complications of Crohn's disease is a blockage of the intestine, usually the small intestine. The obstruction occurs because the inflammation in the intestinal wall eventually leads to scar tissue and narrowing of the lumen of the intestine (the cavity that digested material passes through). Over time, the lumen of the intestine becomes so narrow that even a small amount of inflammation can lead to closing of the lumen and result in a small bowel obstruction. You may feel crampy abdominal pain, bloating and nausea. In more severe cases, you may experience vomiting, lack of bowel movements, or inability to pass gas from below. These symptoms can all be a medical emergency, so you should contact your provider. Your doctor will usually tell you to stop eating, also known as bowel rest. Sometimes, bowel rest can lead to improvement. Intravenous (IV) fluids may be necessary if you continue to vomit and can't keep down fluids. If the obstruction does not improve with conservative measures, surgery is usually recommended.
Crohn's disease may also cause inflammation and ulcers that tunnel through the intestine and form connections to surrounding organs. Examples include fistulate between the intestine and the skin (entero-cutaneous), bladder (entero-vesicle), vagina (rectovaginal), or other parts of the intestine (entero-enteric). Fistulae are most common in the perianal region. Depending on the organ involved, fistulae are either defined as internal (bladder, intestine) or external (skin). Some fistulae that occur between the intestine and other parts of the intestine may not require any therapy. Fistulae may be treated effectively with medication or may require surgery.
Abscesses, or collections of pus, typically must be drained via surgery or through a drain placed by a radiologist. An abscess may cause abdominal pain and fevers or chills. If an abscess ruptures (perforates) suddenly, you may feel severe abdominal pain, fever and chills. The symptoms can be similar to those of appendicitis. Surgery is typically required to treat a sudden perforation. You should contact your provider or seek emergency care if you develop these symptoms.
Mild thinning of the bones (osteopenia) occurs in up to 50 percent of people with Crohn's disease, and more severe thinning of the bones (osteoporosis) can occur in up to 15 percent. This complication is more common if you have required steroid therapy, are a cigarette smoker, have a more active form of Crohn's disease, or have low calcium and vitamin D intake.
A special X-ray called a bone mineral density scan (DEXA) is recommended if you have been on steroids, are postmenopausal, a male over age 50, have had a low-trauma fracture, or have moderate-to-severe Crohn's disease. If you have osteopenia or osteoporosis, your doctor will examine for other causes of bone loss, including an overactive thyroid and low levels of vitamin D. Your doctor may instruct you to take supplemental calcium and vitamin D on a daily basis. You may require other special medications (such as bisphosphonates) to prevent further bone loss. Your doctor may also refer you to an endocrinologist for further care.
If you have Crohn's disease in your colon, you may have an increased risk of colon cancer. Risk factors include: more extensive disease, longer duration of disease, family history of colon cancer, or the presence of a liver condition called primary sclerosing cholangitis (PSC). Your doctor may recommend colonoscopies and biopsies every one to three years after you have had Crohn's disease for eight years. However, if you have PSC, you should start yearly colonoscopies immediately.
Small Intestinal Bacterial Overgrowth
Small intestinal bacterial overgrowth (SIBO) is caused by excessive growth of bacteria in the small intestine. This is often seen in patients who have strictures, fistulae, or loss (due to surgery) of the valve between the small intestine and colon (ileocecal valve). Symptoms of SIBO include diarrhea, bloating, and abdominal cramping. SIBO can be treated with antibiotics.
Nutritional complications may also occur if you have Crohn's disease. This can include deficiencies of protein, calories, or vitamins. These deficiencies are caused by inadequate dietary intake, intestinal loss of protein, or poor absorption of nutrients as a result of the underlying inflammation.
Vitamin D Deficiency – Vitamin D deficiency is common in the general public, especially in the Northeastern United States. Patients with Crohn's disease have even lower levels of vitamin D for a number of possible reasons including reduced consumption of dairy products due to a fear of lactose intolerance and reduced sun exposure because of medications that increase the risk of skin cancer. Malabsorption caused by Crohn's disease is another cause of vitamin D deficiency.
Vitamin B12 Deficiency – Vitamin B12 deficiency is often seen in patients who have undergone resection of a portion of the terminal ileum because this is the part of the intestine that absorbs vitamin B12. Your doctor may prescribe you vitamin B12 supplements that are taken via the mouth, nose or injection.
Fat malabsorption – If you have had large parts of your small intestine removed, you may be at risk for fat malabsorption. This can lead to deficiencies in vitamins A, D, E, and K. Patients with active Crohn's may also be low in iron or magnesium.
Bile salt malabsorption – Resection of the terminal ileum can also lead to diarrhea from malabsorption of bile salts. Bile salts cause the colon to secrete water (instead of absorbing water), resulting in diarrhea. Your doctor may prescribe medications that bind to bile salts such as cholestyramine or colestipol.
Diarrhea and fat malabsorption can lead to the development of kidney stones, which can give symptoms including severe lower back pain (typically on one side only), nausea, vomiting, and blood in the urine.
Bile acid malabsorption may also increase your risk of gallstones. Gallstones often have no symptoms, but can cause occasional pain in your right upper abdomen. Gallstones can lead to a number of complications including inflammation of the gallbladder (cholecystitis), infection of the ducts of the liver (ascending cholangitis), or inflammation of the pancreas (pancreatitis). When you have symptoms from gallstones, your doctor may recommend that your gallbladder is surgically removed (cholecystectomy).
Extra-intestinal manifestations (EIM)
Crohn's disease can affect organs outside the GI tract in up to 25 percent of people. EIMs are more common if your disease involves your colon. Sites that can be affected include:
Joints: typically the lower part of the spine or the peripheral joints (hips, knees, ankles, etc.)
Skin: Two of the most common rashes associated with Crohn's disease are
Pyoderma gangrenosum: ulcerations in the skin
Erythema nodosum: painful, raised red bumps
Uveitis causes eye pain and/or changes in vision and requires evaluation by an ophthalmologist
Episcleritis is painless redness in the whites of your eyes (conjunctiva and sclera)
Fatty liver is the most common liver disease if you have Crohn's disease
Primary sclerosing cholangitis (PSC) is an inflammation of ducts in the liver that can eventually cause the liver to fail (cirrhosis). If you have been diagnosed with PSC, you also have an increased risk for cancer of the ducts of the liver (cholangiocarcinoma) and an increased risk for colon cancer
The symptoms and signs of Crohn's disease vary depending on the location and pattern of disease. Most patients have disease at the end of the ileum and beginning of colon.
Gastroduodenal Crohn's Disease
This is also known as "Upper GI" Crohn's disease and affects the stomach and first part of the small intestine (duodenum)
Symptoms include nausea, loss of appetite, weight loss, vomiting, and pain in the upper abdomen
Gastroduodenal Crohn's disease is uncommon, occurring in approximately five percent of Crohn's disease patients
This is also an uncommon location for Crohn's, with inflammation of the second part of the small intestine (jejunum)
Symptoms include diarrhea, abdominal pain (usually after eating), malnutrition and weight loss
Inflammation of the last part of the small intestine (ileum)
Occurs in approximately 30% of patients
Symptoms include diarrhea, abdominal pain (often in the right lower part of the abdomen) and weight loss
Inflammation of the ileum and colon (most often the right side of the colon)
Most common location of disease, affecting approximately 50% of patients
Symptoms similar to Crohn's ileitis include diarrhea, abdominal pain (often in the right lower quadrant), and weight loss
Inflammation of the colon only affects approximately 20% of patients with Crohn's
Symptoms include diarrhea, rectal bleeding, and abdominal pain
Perianal disease and the extraintestinal manifestations of Crohn's disease are more common if you have Crohn's disease in your colon.
Crohn's disease of the colon can be difficult to distinguish from ulcerative colitis. In ulcerative colitis, the inflammation is continuous and almost always starts in the rectum. Crohn's disease typically does not affect the rectum. In addition, Crohn's disease is often not continuous; there can be healthy segments of bowel between inflamed segments. These segments are called "skip lesions" and are typical of Crohn's disease
Approximately one-third of patients with Crohn's disease will also have inflammation in their perianal area. Perianal disease can include fistulas, fissures, skin tags, or abscesses
Fistula: a connection between two things that are not typically connected. Perianal fistulas can result in drainage of mucus, stool, or pus from openings around the anus
Abscess: collection of pus that usually causes swelling, pain and fever. Abscesses require treatment with antibiotics and sometimes surgical drainage. A perianal abscess can form if the external opening of a fistula closes.
Fissures: sores or ulcerations in the anal canal that are typically very painful.
Skin tags: fleshy growths just outside the anus. Occasionally, these can be confused with hemorrhoids. They are usually painless and do not require treatment.
Disease patterns can change over time. Those most people present with inflammatory Crohn's disease, many will go on to develop fibrostenotic or fistulizing disease.
A form of Crohn's disease with inflammation of the intestine, typically seen early in the course of Crohn's disease. Symptoms include diarrhea, abdominal pain, weight loss, fever, bleeding, fatigue, loss of appetite, and delayed growth in children. Inflammatory Crohn's disease may lead to bowel obstructions.
Over time, persistent inflammation can lead to scarring in the intestinal wall. This scar tissue causes narrowing of the intestine. Eventually, the intestine becomes so narrow that even a small amount of inflammation blocks the passage of fecal material, resulting in a blockage. These small bowel obstructions cause severe abdominal pain, nausea, and vomiting.
If you have fibrostenotic disease, your doctor may ask you to follow a low-residue diet. Most small bowel obstructions improve quickly with conservative therapy (nothing to eat, intravenous fluids). Eventually, fibrostenotic disease requires surgery to remove the scarred section of bowel to prevent small bowel obstructions in the future.
Because Crohn's disease can affect all layers of the bowel wall (transmural inflammation), complications including perforation, abscess and fistula may occur.
Perforation is when a hole develops in the bowel, allowing leaking of fecal material outside of the intestine. Most patients with a perforation will have severe abdominal pain, fever, and chills. The symptoms of perforation can be similar to those of appendicitis. In some patients, symptoms develop more slowly with a mass in the abdomen, fever, chills, and less severe pain. A perforation usually causes an abscess (collection of bacteria and inflammatory cells) that requires antibiotics and drainage. Drainage can be done either surgically or with a drain placed by a radiologist.
Fistulas are connections or tunnels between two things that aren't meant to be connected. The symptoms of a fistula depend on the organ to which the fistulas connect:
Entero-vesical (bowel to bladder) fistulas often lead to recurrent urinary tract infections. You may also experience the passing of gas, blood, or stool when you urinate.
Entero-vaginal (bowel to vagina) fistulas may cause the passing of gas or stool through the vagina.
Entero-cutaneous (bowel to skin) fistulas cause drainage of the bowel contents through the skin's surface
Entero-enteric (bowel to bowel) fistulas can cause diarrhea or an abdominal mass but can also be asymptomatic
There is currently no cure for Crohn's disease. Crohn's disease is a chronic illness that you and your doctors will need to manage throughout your life. The goals of therapy are to control the inflammation and symptoms. This includes helping you get back to feeling like normal (induce remission) and keeping you that way (maintain remission). We want to reduce the number of flare-ups with the fewest side effects from medication. Our hope is that you are able to live without any limitations related to your disease.
With the discovery of new, more powerful medications, the goals of treating Crohn's disease have evolved and expanded to include:
Heal the intestinal mucosa
Prevent the complications of Crohn's disease (fistulae, abscesses, cancer)
Medications known as biologic therapies and immunomodulators can often heal the mucosa successfully and reduce hospitalizations and surgeries. However, some of these more powerful medications are also associated with potentially more significant side effects. Balancing the risks and benefits of the medications is an extremely important issue for you and your doctor to discuss. The risk of the underlying Crohn's disease is typically greater than the risks of any of the medications.
Since Crohn's disease tends to relapse, you may likely require long-term medication to sustain remission. The treatment of Crohn's disease requires a team of healthcare professionals including a primary care physician, gastroenterologist, and often a surgeon. A pharmacist, nutritionist, social worker, nurse, or psychologist may also be a part of your healthcare team.
You should take an active role in your treatment by understanding your options, understanding how your medications work, and familiarizing yourself with potential side effects. You should also know what surgical options may be available. Most importantly, you should not be afraid to ask questions.
The course of Crohn's disease varies greatly and no two patients are alike. Most people with Crohn’s disease have intermittent flares between periods of remission. Over the course of the disease, as many as 75% of patients will require surgery at some point.
The treatment for Crohn's disease depends on many factors:
Location (i.e. upper GI, small bowel, colon, or perianal)
Type (i.e. inflammatory, perforating, stricturing)
Your response to previous medical treatments
Once your disease is in remission and your symptoms are improved, you may need to remain on maintenance therapy in order to prevent flare-ups. Unfortunately, despite medical therapy, up to 75% of patients with Crohn's disease will eventually require surgery to control their disease or help manage one of the associated complications.
It's important that you receive individualized care in which the risks of the medications are weighed against the benefits. Be sure to discuss your options in great detail with your doctor and come to a decision that is right for you.
Medications Used in the Treatment of Crohn's Disease
not typically used any longer for Crohn's disease
In addition to the standard medications above, a number of complementary therapies are used, such as probiotics or specific diets. Very few of these complementary therapies have been studied in clinical trials and none have been proven scientifically to have a substantial benefit. If you are following any complementary therapies, be sure to let your doctor know.
About two-thirds to three-quarters of patients with Crohn's disease will require surgery at some point in their life. That surgery may be abdominal surgery on your large or small bowel, or on your bottom (anus). Of course, we all like to avoid or delay surgery for as long as possible to preserve bowel, avoid discomfort and minimize time away from work and family. Crohn's disease is typically treated with a variety of medications. Sometimes surgery is unavoidable or is the best option for your condition at that time. Surgery should not be thought of as a failure of therapy but rather as a complement to medical therapy that is necessary in particular circumstances.
Your doctor may recommend surgery if you develop these conditions:
Perforation of the intestine (a hole in your bowel). This is rare in Crohn's disease but can be an emergency
A stricture or narrowing of the bowel leading to obstruction or blockage of the bowel.
Abscess, a bad infection and collection of pus in your belly or bottom
Fistula, a connection of your bowel to the skin of your belly or your bottom
Uncontrollable bleeding from the intestine
Cancer or pre-cancerous changes called dysplasia
Inability to wean off steroids
Toxic colitis, a potentially lethal form of severe progressive colitis that does not respond to medicine
Not responding to medications so the impact of your Crohn's disease severely affects your quality of life
The decision to have surgery for CD can be difficult. Your gastroenterologist and surgeon will help you make that decision. Surgery can never "cure" Crohn's but it can help control the condition and treat the complications of the disease. About one-third of patients that require surgery for Crohn's disease will require additional surgery for further symptoms or issues. In order to help control your Crohn's disease there are a number of possible operations depending on how your Crohn's disease is affecting you.
Patients can have Crohn's disease in their small bowel, colon or around the anus. In many cases, patients have Crohn's disease in two or all three parts.
For patients with Crohn's disease in the small bowel
Segmental small bowel resection or ileocolectomy is removing a limited part of the intestine affected by Crohn's disease and putting the remaining healthy bowel back together. This can usually be done laparoscopically (through keyhole incisions) and requires only a few days in the hospital. Recurrence of Crohn's disease at the site of surgery is common but can be delayed or prevented by medications from your gastroenterologist. Your doctor will likely recommend a colonoscopy to see the site of the surgery about 6 months after the operation. Approximately 20% of patients will require another surgery within 10 years of the first surgery. Very rarely, in the context of urgent or emergent surgery, you might require an ileostomy or stoma (bag). An ileostomy is where your small intestine is brought up to the abdominal wall and you evacuate your stool into a bag appliance attached to your skin. More information about ostomies can be found here. The ostomy is temporary in most cases and can be reversed.
If you have one or multiple tight narrowings of your small bowel that are causing blockages the strictures or narrowings can sometimes be opened up without removing the bowel. The advantage of this surgery is that the amount of intestine that is removed can be limited. This surgery can also be done laparoscopically requiring a few days in the hospital. Recurrence is similar to segmental bowel resection above.
For patients with Crohn's disease in the large bowel (colon)
Colectomy is the removal of the colon with or without an ileostomy or stoma (bag). In some patients, Crohn's disease can behave like ulcerative colitis and only affect the colon. In cases where Crohn's disease is limited to the colon and causes inflammation that is not sufficiently treated with medication, removing the colon may be necessary. Most patients with Crohn's disease who have a colectomy require a ileostomy or stoma (bag). If the very last part of your colon (the rectum) is unaffected, reconnection may be an option to discuss with your surgeon. Unlike ulcerative colitis, an IPAA or J-pouch surgery is rarely an option in Crohn's disease. Many people with Crohn's colitis are very happy to have an ileostomy over life with chronic pain and diarrhea.
For patients with Crohn's disease in the anus
Perianal manifestations of Crohn disease include perianal fistula, perianal abscess (infection), and anal canal lesions (anal fissures and anal stricture). Symptoms can vary from rectal pain and perianal discharge to bleeding or difficulty with defecation. For most patients with Crohn's disease and perianal fistula, complete fistula closure is the primary goal. For some patients with complex perianal fistulas, the achievable goal of therapy is symptomatic improvement (eg, less rectal pain, reduced drainage) and better quality of life but without complete fistula healing and closure. An examination under anesthesia with placement of seton drains (small rubber strings) is recommended for pain relief and control of the infection.
In general, women with well-controlled Crohn's disease appear to have similar fertility rates and birth outcomes to women without the disease. Some studies have shown a slightly increased risk of premature birth (before 37 weeks) and low birth weight infants. It is felt that women with active Crohn's disease are at greatest risk for these negative outcomes.
If you are a woman with Crohn's disease, we recommend that you discuss your pregnancy plans with your provider before attempting to conceive. Your doctor may recommend trying to get your Crohn's disease in remission before attempting to conceive. We also recommend that pregnant women with Crohn's disease consult with a high-risk obstetrician.
The risk of a Crohn's disease flare during pregnancy is similar to the non-pregnant population. Crohn's treatment for pregnant women is usually the same as for non-pregnant women. Continuing your medications that keep the Crohn's disease under control is also important throughout your pregnancy. You should discuss this in great detail with your doctor. Notable exceptions are methotrexate, thalidomide, and certain antibiotics which must be stopped prior to pregnancy because they can cause birth defects.
In most cases, the method of delivery (vaginal versus C-section) is up to you and your obstetrician. Only in cases of active perianal disease will a gastroenterologist recommend C-section over a vaginal delivery.
Since many patients with Crohn's disease are on immunomodulators or biologics or may eventually end up on these medications, routine vaccination against influenza, pneumococcus, tetanus, and hepatitis A and B is recommended. The HPV vaccine is recommended for young women and men. If you have not been previously exposed to varicella (chicken pox) and are not currently on an immunosuppressive medication, the varicella vaccine is also recommended.
If you are already on certain medications that weaken your immune system, you should not receive live vaccines such as Zostavax, yellow fever, measles-mumps-rubella, and oral typhoid. You should also only receive the injection form of the flu vaccine.
Smoking has been shown to increase the risk for Crohn's disease and worsen the course of Crohn's disease. Smokers may be less responsive to certain treatments and are more likely to develop a recurrence of Crohn's disease after surgery. Quitting smoking is one of the best things you can do to prevent your condition from worsening.
Nonsteroidal Anti-inflammatories (NSAIDs)
Studies have suggested that NSAIDs, such as ibuprofen and naproxen, can cause flares of IBD in approximately 25 percent of patients. These flares tend to occur within one week of starting regular use of the drug. Acetaminophen (Tylenol) and aspirin appear to be safe. Celebrex (celecoxib) is a specific type of NSAID called a cox-2 inhibitor that appears to be safe. You should discuss all of these medications with your doctor.