Understanding IBD. What is inflammatory bowel disease (IBD)? The term inflammatory bowel disease (IBD) is a category of gastrointestinal illnesses that encompasses two conditions: Crohn’s disease and ulcerative colitis. Both Crohn’s disease and ulcerative colitis are illnesses that cause inflammation of the gastrointestinal (GI) tract. Abdominal pain and diarrhea (often containing blood) are common symptoms for both diseases. Because of their like symptoms, doctors sometimes find it difficult to determine which IBD diagnosis is the best. As a result, almost one-tenth of IBD patients have conditions for which a conclusive judgment between Crohn’s disease and ulcerative colitis cannot be made.
What are the differences between Crohn’s disease and ulcerative colitis?
Despite the close relationship between Crohn’s disease and ulcerative colitis, the two diseases do have a few points of difference. Crohn’s disease can cause inflammation in any portion of the GI tract. The inflammation penetrates all layers of the bowel wall, but the inflammation may be irregularly spaced. There are often normal areas of lining called skip lesions that are in between inflamed regions. Ulcerative colitis, on the other hand, is limited specifically to the colon. The colon is also sometimes referred to as the large intestine. Ulcerative colitis also only involves inner lining of the colon.
What causes IBD?
Doctors and scientists do not know a single definitive cause of IBD, but they do know what does not cause IBD. The most important point regarding this subject is that the person with Crohn’s or ulcerative colitis is not to blame for being diagnosed with IBD. Crohn’s and colitis are not contagious, and so patients can be assured that they did not get the illness from another person. Additionally, Crohn’s and colitis are not caused by certain foods or drinks that one may have previously consumed, and so patients can be assured that diet alone is not the reason for IBD. Currently experts believe genetic and environmental factors combine to cause IBD. The present theory is that certain arrangements of genes may make a person more prone to IBD. Such predisposed people may then encounter an environmental trigger (for example: a virus, bacterium or an allergy) that causes the immune system to “turn on” and aggressively attack itself. Unfortunately the immune system is never “turned off”, and thus inflammation occurs.
What other signs and symptoms are associated with IBD?
IBD patients may have a range of symptoms associated with their chronic illness. These symptoms may vary with time—symptoms decrease during remission and increase during flare-ups. Persistent diarrhea, abdominal spasms, rectal bleeding, appetite loss, weight loss, and fatigue are frequently seen in IBD patients. Children diagnosed with IBD may also experience decreased growth and development.
Less commonly patients with IBD may develop symptoms that extend beyond the GI tract. Along with abdominal concerns, some patients might also have itchiness or redness of the eyes, pain and swelling of the joints, mouth sores, skin sores, and kidney stones. This may seem like overwhelming possibilities but rest assured that most people with Crohn’s do not get these problems. In some instances, these symptoms may be signs that lead a doctor to diagnose a patient with IBD. In other cases, these symptoms do not develop until after a patient is diagnosed.
It is also important to be aware that IBD patients are at an increased risk for blood clots, anemia, and osteoporosis.
What are some other quick disease statistics?
- More than 1 million Americans are diagnosed with IBD.
- Both men and women are at equal risk for developing IBD.
- Though IBD can occur at any age, most people are diagnosed between the ages of 15 and 35.
- 20% of people with Crohn’s disease have a parent or sibling with IBD.
- 25% to 33% of patients with ulcerative colitis eventually undergo surgery.
- 66% to 75% of Crohn’s patients undergo surgery at some point in their life.
Is there anything patients can do in their daily life to improve their symptoms?
Both Crohn’s and ulcerative colitis are conditions that can be improved with moderate lifestyle changes. Though one’s previous diet did not cause IBD, patients who pay close attention to their diet after being diagnosed can reduce painful symptoms. Because of their inflamed GI tract, patients with IBD are less able to digest and absorb nutrients from food. It is therefore very important to eat a well-balanced diet in order to receive adequate nutrition. A daily multivitamin may also be used to supplement the body’s dietary needs. Crohn’s disease and ulcerative colitis can often have unpredictable symptoms. But by paying attention to which foods are easier to digest and which foods are more irritating to digest, patients can successfully develop a diet that helps to manage their chronic illness. During flair-ups, a patient may need to follow a low residue diet low fiber. As symptoms improve and as remission is achieved, more fiber rich foods can slowly be introduced into a patient’s diet. In addition to diet, managing one’s emotional stress can also be beneficial. It has been noted that patients may experience flare-ups of symptoms during times of stress. Though stress is not a cause of IBD, it is important to understand that there is a close relationship between one’s mind and body. Learning to manage stressful situations better may reduce pain and even inflammation. One’s overall well-being is vital to the treatment of IBD. A combination of a well-balanced diet, stress management, sufficient sleep, adequate exercise, and an optimistic attitude are the foundation to an effective therapy process.
Are there any medications that IBD patients can take?
Drug treatment options for Crohn’s disease and ulcerative colitis have been constantly expanding and improving especially since the early 1,990s. Continued research has promoted new therapies for people with IBD, and now patients have a wide-range of treatment options. Though there are a variety of medical therapies available, all IBD treatments have the same three goals: to reduce the occurrence of flare-ups, to prevent flair-ups, and to improve the patient’s quality of life. In other words, the purpose of treatment is to bring about remission, a term for the significant decrease or disappearance of a patient’s aggravating symptoms.
In order to achieve remission, inflammation of the GI tract must be carefully controlled. Depending on the area of inflammation and the degree of inflammation, different drugs may be more effective for some patients than for others.
The earliest drugs used to treat IBD, aminosalicylates, are still an effective form of treatment for IBD patients today. Aminosalicylates, often referred to as 5-ASA’s, contain aspirin-like compounds that reduce inflammation. There are a few types of aminosalicylates including sulfasalazine (Azulfidine®) , mesalamine (Asacol® , Delzicol, Apriso®, Canasa®, Pentasa®, Lialda®), and olsalazine (Dipentum®), and balsalazide (Colazal®). Aminosalicylates are most commonly used as treatment for patients with mild to moderate symptoms of Crohn’s disease or ulcerative colitis, and to help maintain remission. These medications can either be administered orally or rectally, depending on where the inflammation is located. Steroids may also be an effective treatment for IBD patients because they help to decrease inflammation and suppress the body’s immune response. Suppressing the immune response may not completely “turn off” the attack, but it may hinder it. Steroids are used for short-term treatment of patients with moderate to severe symptoms of IBD. They help to manage flair-up episodes.
Immunosuppressive drugs may be used to treat patients who have not had a significant response to aminosalicylates and steroids. Immunosuppressives have the sole purpose of slowing down the activity of the immune system. Specific immunosuppressive drugs are also called immunomodulatory medications. The two most common immunomodulatory medications used are azathioprine (Imuran) and 6-mercaptopurine (6-MP, Purinethol). Other immunomodulatory medications include Cyclosporin and methotrexate. These immunomodulator medications are different but they all work by inhibiting DNA and RNA, impairing the inflammatory cells from turning on. Though often a successful treatment option, they make take three months to take effect.
Biologics are one of the newer drugs to become available for IBD patients. The term “biologics” means that the medications have been developed to target the proteins, genes, and antibodies that are involved in the disease process. An example of a biologic used for IBD treatment is a protein that block excess tumor necrosis factor (TNF), a protein that causes inflammation and swelling in the GI tract. There are several different varieties of anti-TNF biologics that act in this manner. The most common biologic therapy is known as Remicade® (generic name infliximab), an intravenous infusion given over the course of a few hours. It is effective for reducing the occurrence of fistulas and may help to maintain remission for patients with moderately to severely active IBD disease. Other anti-TNF agents include Simponi (golimumab), Humira (generic name adalimumab) and Cimzia (generic name certolizumab pegol) have been FDA approved as TNF inhibitors. Humira and Cimzia may be effective for patients who have not responded well or have become intolerant to infliximab treatment. Other biological agents include Entyvio (vedolizumab), Stelara (Ustekinumab), and Xeljanz (tofacitinib).
Lately there has also been much interest in the bacterial make-up of the gastrointestinal tract. New therapies known as prebiotics are non-digestible plant fibers that help to stimulate the growth of healthy bacteria in the intestines. Prebiotics have been shown to improve GI health and may be used to treat IBD. Probiotics, available in powders, liquids, and in certain dairy products, are also used to promote beneficial bacteria in the colon. Ongoing IBD research holds much future promise.
Do all IBD patients need to undergo surgery?
Patients with ulcerative colitis may be able to manage their illness successfully without surgery, yet as noted earlier, 25% to 33% of UC patients may require surgery. Those who have severe complications from their chronic illness may opt to have a colectomy, or removal of the entire colon. This decision may be made for a number of reasons. These reasons include medication failure, cancer risk, and toxic megacolon that may cause such severe symptoms that the colon is at risk for rupturing.
Toxic megacolon is the term for a condition when the muscles in the colon dilate and cause bacteria and gases to accumulate. Surgery to remove the colon will cure ulcerative colitis. Crohn’s patients may also require surgery if serious complications arise. Surgery does not cure Crohn’s disease, however. Even if the diseased portion of the GI tract is excised, inflammation is likely to re-emerge in other areas. The decision to undergo surgery may be necessary when there is excess bleeding in the intestine, abscess perforation of the bowel, or toxic megacolon. The development of fistulas and abscesses may also require surgery. Fistulas occur when the inflammation penetrates so deeply into the wall of the small intestine and bowel that intestinal contents begin to seep into the body. This may cause increased diarrhea, poor food absorption, and dehydration. Abscesses are also caused when inflammation penetrates the walls of gastrointestinal organs. Abscesses are not channels like fistulas but rather pockets of inflammation that may cause fever, chills, and tenderness around the site. About 25 percent of IBD patients will experience a fistula or abscess during their lifetime.
The most common complication that requires surgery is intestinal blockage. Blockages occur when the digestive tract narrows and obstructs the passage of food. The narrow, constricted sections of the GI tract are called strictures. Strictures are caused by severe inflammation that scars the inner wall of the intestine. This may lead to cramping, pain, constipation, and vomiting. Undergoing surgery does not mean that a patient’s treatment failed. Surgery is just another therapy option for IBD patients.
Do IBD patients always need to take their medication?
Though doctors and nurses are essential to one’s course of treatment, patients themselves also play a very important role. Patients are responsible for monitoring the foods that they eat and consistently taking their prescribed medication. In a recent study of IBD patients, it was discovered that only 61% of patients adhered to their treatment. The lack of compliance, or following of a treatment program, is more prevalent with IBD patients who are young, patients who have a busy job schedule, patients who have been recently diagnosed, and patients who are in remission. Since symptoms of IBD can alternate between flare-ups and remission, it is often tempting for patients in remission to stop taking medication. Ceasing medication may be a potential cause of disease relapse, however. In order to achieve increased compliance to treatment, it is important that patients have a comfortable and communicative relationship with their physicians.
Complications of IBD
How can young IBD patients be at risk for osteoporosis?
Despite common belief, osteoporosis (a Greek word meaning “porous bones”) can occur at any age. In fact 30 to 60% of IBD patients have lower-than-normal bone density and are at risk for osteoporosis. Low bone density occurs when bones lack sufficient minerals and begin to thin and weaken. Even patients between ages 20-30 who should have optimal bone strength because of their age may have osteoporosis. Since people who are beginning to develop osteoporosis may have no symptoms, it is important to get regular bone density testing. This will monitor the strength of one’s bones and thus help to prevent fractures.
Can women with IBD have children?
Yes, female patients are able to have children safely. Though they may need to be carefully monitored by a doctor, it is not dangerous to give birth. Patients who are considering getting pregnant should attempt to bring their disease into remission in order to have an easier pregnancy. Fertility may be reduced in patients who are experiencing severe flare-ups, but most IBD patients have equal fertility rates as women without IBD.
Does smoking affect patients with IBD?
Tobacco use can cause serious health complications and should cease regardless of one’s gastrointestinal condition. For those affected by IBD, smoking can actually worsen their symptoms and may lead to an increased need for medications. Tobacco cessation in Crohn’s patients is a particularly important step towards achieving remission.
Where can patients go to get support?
Though IBD patients can certainly live normal lives, there are sure to be instances throughout the course of a patient’s chronic disease where IBD may cause additional stress. It is therefore important to have a solid group of friends, family, and other IBD patients with whom there can be open, honest conversations. Local chapters of the Crohn’s and Colitis Foundation and local Harrisburg organizations exist to facilitate this kind of support. New online communities can also be accessed to provide similar group interactions between IBD patients.