Part 1: The Basics
What is inflammatory bowel disease?
Inflammatory bowel disease is a disorder affecting the Gastrointestinal Tract. Crohn’s Disease (CD) and Ulcerative Colitis (UC) are the two primary types of chronic Inflammatory Bowel Disease (IBD). The location, severity of inflammation, and level of tissue involvement help determine the type of disease you have.
What is Crohn’s disease?
Crohn’s disease is a chronic inflammatory disease that can affect any part of the digestive tract (mainly the small intestine, large intestine, or both). Unlike Ulcerative Colitis, which affects only the innermost layer of the colon (large intestine), CD penetrates the entire mucosal wall lining. This damage can lead to thickening and/or narrowing (also known as stricture) which in turn, can lead to complications such as intestinal blockage and/or abscess formation. Damage can occur in patchy areas creating a skip-pattern of disease that may involve the mouth, small intestine, large intestine, and/or rectum.
What are the terms of the anatomy of the organs involved in Crohns? This area can be very confusing for patients as there are many names used synonymously that refer to the same anatomical area. Let’s start with the basics: Typically in CD, the areas mainly affected, as mentioned above, include the small intestine and/or the large intestine. The small intestine can also be referred to as the small bowel. This area can be divided into three parts starting with the duodenum, jejunum, and ileum. Although there are several functions of the small bowel, its main responsibility in the body is for the chemical digestion and absorption of nutrients from the food we eat. Next, we have the large intestine, also referred to as the large bowel. This area can be divided into several parts including the cecum, ascending colon, transverse colon, descending colon, sigmoid colon, and finally the rectum. This area is mainly responsible for absorption of water from the indigestible residue of food.
Are there different types of Crohn’s disease?
There are different types of Crohn’s disease. The type of disease depends on what part of the body is affected:
1. Gastroduodenal Crohn's Disease- upper GI Crohn’s disease
Uncommon - symptoms in approximately 5% of patients
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
2. Jejunoileitis- inflammation of the second part of the small intestine (jejunum)
Symptoms include diarrhea, abdominal pain (usually after eating), malnutrition due to malabsorption of nutrients, and weight loss
3. Ileitis- 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 quadrant), and weight loss
4. Ileocolitis- inflammation of the ileum and colon (most often the right side of the colon.
Most common type of disease, affecting approximately 50% of patients
Symptoms similar to Crohn's ileitis: diarrhea, abdominal pain (often in the right lower quadrant), and weight loss
5. Crohn's Colitis- inflammation of the colon only
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 in patients with involvement of the colon.
What are extraintestinal manifestations? This term refers to patient complaints that include but are not limited to symptoms such as joint aches, mouth cold sores (aphthous ulcers), red, painful eyes, painful skin bumps, etc.
6. Perianal Disease
Affects up to 1/3 of patients with Crohn's disease
Patients can present with fistulae, fissures, skin tags, or abscesses:
Perianal Fistulas: perianal fistulas result from small collections of inflammation and infection that tunnel their way from the anal muscle (sphincter) to the skin around the anus. This leads to drainage of mucus, stool, or pus from openings around the perianal area. If the external opening closes, an abscess may develop, which characteristically will present with swelling and pain in the perianal area. This can lead to an infection of the patient which typically, is associated with a fever. Normally, this requires treatment with antibiotics and often, surgical drainage.
*Please keep in mind that fistulas are not limited to only locations including perianal. To clarify, fistulas can begin anywhere in an organ. What is a fistula? A fistula is an abnormal tunnel of communication starting from one organ that leads to another organ or that leads to an opening in the skin.
If you suspect you may have a fistula or during your appointment at the OSU IBD Center they tell you that you have a fistula, your provider will go over treatment options specifically catered to you.
Fissures: fissures are sores or ulcerations in the lining of the skin that crosses the anal canal; these can be quite painful. The good news is that there is treatment for this painful symptom. Please contact your provider at the OSU IBD Center for more information regarding treatment.
Skin tags: patients with Crohn's can develop fleshy growths just outside the anus which are known as skin tags. Occasionally, these can be confused with hemorrhoids but they are usually not painful.
Part 2: Risk Factors and Prevention
Does Crohn’s disease run in families? Can I pass Crohn’s disease to my children?
Yes, about 20% of persons with Crohn’s Disease have a family member who also has disease. However, based on current research, there is no way to predict which, if any, family members will develop Crohn’s Disease. While the causes of Crohn’s Disease are not fully understood, there is a genetic component and so you may pass this onto your children. It is estimated that your children will have about an 8% increased risk for developing the disease. At this time, there is no genetic testing available specific to the Crohn’s Disease gene.
What factors can affect Crohn’s disease?
Crohn’s disease may affect any age group, although there are peaks between the ages 15 – 35, and it can be diagnosed at any age. Genetic, environmental, dietary, and immune system factors can all affect Crohn’s disease.
Genetic- Many times, the patient with Crohn’s disease will also have a relative with Crohn’s. The prevalence of Crohn’s disease is higher among white people of European origin and among people of Jewish heritage.
Environmental- Smoking in Crohn’s disease is associated with more flares, more complications, and worsening disease. Also, exposure to non-steroidal anti-inflammatory drugs (NSAIDs), a class of medications commonly used to treat headaches and muscle aches and pains can affect flare-ups. Common NSAIDs include ibuprofen, naproxen, and aspirin. While there is no evidence that stress causes Crohn’s disease, stress is another environmental factor that can negatively impact your health. Notify your provider if you are having a difficult time coping with daily activities.
Dietary- Some people believe that Crohn’s disease may be triggered by the foods we eat. However, no studies have suggested that diet can either cause or treat CD and there is no specific diet that patients with the disease should follow although it is advisable to eat a balanced diet. That said, some people have food sensitivities, such as lactose or gluten intolerance that may aggravate the GI Tract and worsen symptoms. Avoiding known triggers may help improve symptoms.
Here at the OSU IBD Center, our team will discuss with you specifically about your diet, your symptoms related to your diet, and your dietary options. We also have an IBD nutritionist whom we refer patients to quite often.
Inflammation- Research shows that substances in the intestine are mistaken for foreign or invading substances (also referred to as antigens). These antigens may be the direct cause of the inflammation, or they may stimulate the body's defenses to produce an inflammatory reaction. Normally, your immune system causes a temporary inflammation to help fight antigens (which is a good thing), and then the inflammation subsides on its own as you regain health. However, in Crohn’s disease, there is a disruption with your body knowing when to “turn off” the cascade of inflammation. The body’s initial reaction of inflammation, unfortunately, does not turn off. Subsequently, inflammation continues much longer than what was originally intended, and thus, this causes further damage to your GI tract.
Part 3: Diagnosis
How does my doctor diagnose Crohn’s disease?
Crohn’s disease can be difficult to diagnose, because symptoms can be similar to other intestinal disorders. There is no one definitive test to diagnose CD. An evaluation for Crohn’s will include a comprehensive medical history and physical exam. A series of laboratory blood and stool tests will be used to evaluate your nutritional status, kidney and liver function status, your levels of inflammation and infection, and the specific genetic components related to your disease management.
Imaging is another important tool for evaluating the appearance of the gastrointestinal tract. CT scan enterography or MRI enterography are commonly used for this purpose.
Endoscopy procedures are used to evaluate the appearance of the gastrointestinal tract as well as obtain tissue biopsies to determine the nature and extent of the disease. Endoscopy is an umbrella term used to define procedures such as EGD and a colonoscopy.
Part 4: Treatment Options
If consume alcohol, consume in low-moderate amounts
Maintain Healthy Weight
Control Stress- implement stress/anxiety reducing techniques
Can refer to weight management coach and/or psychiatry
Maintain current diet
Refer to OSU IBD Center Nutritionist
Discussed in Part 6
Fecal Matter Transplant (FMT)
Discussed in Part 11
What are the different types of medications used to treat Crohn’s disease?
There are several types of medications used to treat Crohn’s disease. These medications work in different ways to reduce inflammation in the gastrointestinal tract.
The main classes of medications used in the treatment of CD include:
5-ASA(Aminosalicylates) are anti-inflammatory medications that do not affect the immune system. These medications are available orally or topically in the form of a suppository or enema, depending upon the location of your disease.
Immunomodulators are medications that reduce inflammation through suppression of the immune system. In order for this type of medication to be used to its full potential, we need the patient to be very compliant in regards to being current on all immunizations, obtaining regular lab testing, and reporting any signs of infection while taking one of these medications.
Biologic Agents are medications that reduce inflammation through their effect on the immune system. There are several classes of medications that fall within the class of Biologic Agents- each with their own differentiating mechanism of action. The most commonly used class of Biologics is the Anti-TNF (Tumor Necrosis Factor) medications whose mechanism of action works by blocking the proteins responsible for inflammation in the intestines. Since these medications suppress the immune system, we need the patient to be very compliant in regards to being current on all immunizations, obtaining regular lab testing, and reporting any signs of infection while taking one of these medications.
Corticosteroids reduce inflammation through suppression of the immune system and may be used for short-term therapy in intravenous, oral or topical form. These medications are frowned upon because they have negative side effects that affect many systems within your body.
If I am feeling well, why do I have to keep taking my medications?
Crohn’s disease is a chronic disease that exhibits periods of flare and subsequent remission. It is important to adhere to a regular medication schedule to maintain remission and allow for proper healing. Uncontrolled inflammation can spread and worsen throughout your colon leading to narrowing, strictures, and possible sites of infection. Also, with certain medications, if you stop them for a period of time, antibody formation can occur and this medication will no longer work for you, should you need to resume it.
*What is antibody formation? Antibody formation is when your body now recognizes this medication as foreign, and develops resistance to it. In other words, your body “goes to war” with the medication and rejects it. As a result, this medication will now have no therapeutic effect on treating your Crohn’s.
How is peri anal Crohn’s disease treated medically?
Peri anal disease may include the presence of skin tags, fissures, ulcers, abscesses, fistulas or stricture near the anal canal. The gastroenterologist and surgeon will work together to treat any infections, reduce inflammation and place any drains needed to facilitate proper drainage and healing of the site.
Part 5: Complications
What is my risk of developing colon cancer?
Having Crohn’s Disease does pose an increased risk for developing colon cancer. More extensive disease poses a greater the risk for developing colorectal cancer than mild disease. The length of time a person has CD also affects colorectal cancer risk.
Is there anything I can do to decrease my risk?
Regular colonoscopy screening for colon cancer will be part of your medical care. Be sure to complete screening as recommended by your provider.
Part 6: Surgery
How often is surgery needed in patients with Crohn’s disease and what operations are typically performed?
Despite advances in medical treatment, the majority of patients with Crohn’s disease will ultimately require surgery and unfortunately, more than 50% of those patients will require additional surgeries during their lifetime.
What are the potential complications of surgery for Crohn’s disease?
Surgical resection of severely diseased sections of colon is not without risk for complication. You will be monitored for infection, inflammation, degree of healing, and nutritional status during the post-operative period. You will have continued close follow-up with your gastroenterologist to address any concerns.
Part 7: Coping and Surviving
Does stress cause Crohn’s disease?
While research has not shown that stress plays a causative role in the development of Crohn’s disease, it is known that stress does have an impact on the body’s immune system. Physical and emotional stressors negatively affect a person’s ability to fight disease so it is important to address the levels of stress, anxiety, and depression with your health care provider.
Can Stress affect my symptoms?
It can be difficult to determine whether stress is causing abdominal symptoms such as cramping and loose stools or whether worsening inflammation is causing symptoms and inherently increasing stress about the diarrhea and pain. It is important to reflect on your personal daily experiences in an attempt to differentiate disease from stress-related symptoms. Stress reduction techniques such as meditation and yoga can be helpful with symptoms. Patients are encouraged to seek psychological support for help in coping with their symptoms.
I am sick and having trouble making it to work every day. How can I work with my employer to help them understand my health situation?
In January, 2009, an amendment was made to the American Disabilities Act (ADA) that specifically lists abnormalities in the gastrointestinal tract as a covered disability. Reasonable accommodations for a person suffering from IBD may include: allowing enough time for frequent bathroom breaks, moving the person’s workstation closer to restroom facilities, time-off for doctor’s appointments and hospitalizations related to flare-ups, and the provision of flexible work schedules and telecommuting where applicable. Additionally, patients may be eligible for additional time off through the Family Medical leave Act (FMLA.) The Crohn’s and Colitis Foundation of America have several local chapters and additional resources to help patients obtain coverage under the ADA or FMLA laws. (Toll-free number: 1-800-932-2423)
Part 8: Nutrition in Crohn’s Disease
What nutritional problems should I expect with Crohn’s disease?
Patients with Crohn’s disease may experience a loss of appetite resulting in a decreased nutrient intake. Additionally, inflammation or surgical removal of sections in the bowel can lead to decreased absorption and metabolism of certain nutrients. Eating less and absorbing fewer nutrients can lead to malnutrition. Your provider will be monitoring certain protein and nutrient levels to be sure your body is getting what it needs to function well. It is important to eat a well-balanced diet and avoid foods that are known to exacerbate symptoms. You may also require supplements to help meet your body’s nutritional needs.
Will diet cause symptoms?
Research has not been able to determine if certain foods actually lead to inflammation but patients often report worsening symptoms associated with a specific food or trigger. It is important to recognize your personal food triggers for inflammation. This can be done by eliminating suspect items one at a time to determine if there is a relationship between eating that food/food group and symptoms. There is an increased rate of lactose intolerance and gluten sensitivity in patients with IBD, but everyone is different. A consultation with a nutritionist may be helpful.
Will diet aggravate my disease?
Certain foods may seem to make things worse while you are experiencing active inflammation. Eating small frequent meals may be more tolerable than 1 or 2 large meals per day. Again, everyone experiences these symptoms differently and you will learn to recognize your trigger foods.
What is enteral feeding?
When people cannot take in enough nutrients by mouth, enteral feedings may be needed. Also called "tube feeding," enteral nutrition is a mixture of vital nutrients such as proteins, fluids, electrolytes, and fat-soluble vitamins delivered through a tube to the stomach or small intestine.
What is TPN feeding?
Another option when people cannot take in enough nutrients by mouth is TPN feeding. With total parenteral nutrition, a solution of essential nutrients (including proteins, fluids, electrolytes, and fat-soluble vitamins) is given into the veins. Because TPN solutions are highly concentrated and thick, these solutions are given through catheters that are placed in large central veins in the neck, chest, or groin.
Part 9: Miscellaneous Issues and Resources
Where can I get more information about Crohn’s disease?
The medications used in the management of Inflammatory Bowel Disease can be very expensive. Ask about prescription assistance through the pharmaceutical companies and visit their web pages for each specific drug.
There is also a Patient Advocate Foundation with a program to assist with high co-pays: (http://www.copays.org or 866-512-3861)
Crohn’s and Colitis Foundation of America http://www.ccfa.org
American College of Gastroenterology http://www.acg.gi.org
American Gastrological Association http://gastro.org
Part 10: Crohn’s and Pregnancy
What is the treatment like for the patient who is pregnant?
First, the treatment is very individualized. There is no “one shoe fits all”. When you first find out you are pregnant, please notify your IBD provider immediately. We will discuss with you about referring you to a high risk obstetrician. You can still be managed by your regular OB-GYN but we prefer that you also be managed by a high risk OB doctor that will be familiar with pregnancy and CD. The sooner the provider is aware of your pregnancy the sooner we can cater your treatment to best suite you and your baby. There are certain medications that can be used during pregnancy as well as certain medications that are not used. Typically, the classes of medications we use include 5 ASA’s, Biologic Agents, antibiotics and corticosteroids (prednisone only). Within the class of Biologic agents, we prefer Cimzia, however, if you were previously on another Biologic agent such as Remicade or Humira, these medications are safe and efficacious during pregnancy and can be continued. Additionally, Biologic agents can be started during the first trimester and used throughout the entire pregnancy. There is a special consideration in regards to the timing of the discontinuation of the medication before your delivery, and is medication specific. Your IBD provider will discuss with you the appropriate timing of when to discontinue your Biologic medication. Last, typically when patients are needed antibiotics, we favor prescribing these after the first trimester.
Is there a preference in regards to vaginal versus Cesarean delivery? Is there a preference in regards to breastfeeding or formula feeding?
Per many research studies, it is best and most efficacious for both mother and baby to undergo a vaginal delivery. Ultimately, your OB-GYN will decide the safety and necessity when determining the type of delivery; however, in regards to CD, a vaginal delivery is best. A vaginal delivery helps promote normal, healthy bacterial GI flora to the baby. Secondly, there is a preference in regards to breast feeding. Ultimately, the goal would be for the mother to breast feed the baby for at least a year if possible. Research has shown many healthy, positive benefits for both the mother and baby while breast feeding. The longer the mother can breast feed the more beneficial. However, any length of time of breast feeding is preferred over none at all.
When Do I restart my Crohn’s medication after delivery? Is there a difference in the timing of my medication if I had a vaginal or Cesarean delivery?
The timing of when to restart your medication depends upon the type of delivery you had. Typically for a patient with an uncomplicated vaginal delivery with no episiotomy, one can restart within a week of delivery. However, the patient who had a Cesarean section with an abdominal incision and/or the patient who delivered vaginally with an episiotomy or who underwent a significant degree of vaginal tearing should wait to restart the Biologic medication until clearance of a medical provider (i.e. OB-GYN, IBD Provider, etc.) is given. Typically, clearance depends upon the rate of healing of the incision or tear. It is safe to restart Biologics when your risk of infection is low and/or when your incision or tear is at low risk for complications by infection.
What type of medications can I take for my Crohn’s while I am breastfeeding? Are there certain precautions I should take for my baby?
Your IBD provider will meet with you and talk with you on an individual basis regarding what type(s) of Crohn medications are best for you while breastfeeding. Typically, if a patient is breastfeeding it is safe for them to start or restart Biologic Agents. However, again, we will meet with you in person and go over your treatment options and their safety profile. It is important to note that if a mother does decide to breastfeed and is taking a biologic medication, live vaccinations given to the baby need to be delayed for the first six months of life. Typically, this includes the Rotavirus which is first given when the baby is two months of age. Please notify your baby’s pediatrician that you are taking a biologic medication.
Quick Housekeeping Reminders:
Please inform your IBD Provider and OB-GYN immediately upon confirmation or suspicion of pregnancy.
At your first visit with your IBD Provider, we will refer you to a high risk OB-GYN. This is beneficial to you because this type of provider is very familiar with managing the safety of pregnancy and Crohn’s. At your preference, you can still be managed by your regular OB-GYN Provider.
Please discuss with your IBD Provider, OB-GYN Provider, and high risk OB-GYN Provider regarding your preference upon route of delivery and preference of breast-feeding or formula.
Vaginal delivery is preferred over Cesarean delivery.
Breast-feeding is preferred over formula feeding.
Please inform your baby’s pediatrician that you are taking a Biologic Agent.
Please keep in mind that if you are taking a Biologic medication and are breast-feeding, please delay all live vaccinations for your baby in the first six months of life, particularly the Rotavirus Vaccine.
Please schedule a follow up appointment with your IBD Provider within one to two weeks after delivery so we can best optimize the care, treatment, and management of your Crohn’s disease.
Most importantly, stop smoking!
For referral to see a GHN Specialist in our division:
Universal Referral Form