Part 1: The Basics
Inflammatory bowel diseases are disorders affecting the Gastrointestinal Tract. Crohn’s Disease and Ulcerative Colitis 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.
Ulcerative Colitis (UC) is an inflammatory disorder that affects primarily the rectum and the large intestine, also known as the colon and/or large bowel. UC is characterized by ongoing inflammation that affects the inner-most layer of the colon lining. This inflammation occurs in a continuous pattern and can lead to ulcerations and sores in the colon mucosa. The type of Ulcerative Colitis is classified by how far the disease extends up the colon:
Symptoms of Ulcerative Colitis vary depending upon the location and severity of inflammation. The most common symptom reported with Ulcerative Colitis is bloody diarrhea. Abdominal cramping or pain, and rectal pain may also occur. Increasing inflammation can lead to worsening symptoms, and you may experience urgency, fever, chills, and loss of appetite. As the disease continues, you may notice fatigue and weight loss. You will be asked specifically about the number of liquid stools per day and the presence of any pain, fever or rapid heart rate. This symptom report helps your provider determine if the colitis is mild, moderate, severe, or fulminant(very severe). Symptoms of ulcerative colitis can be intermittent. That is, they come and go with periods of “flare” and “remission.”
Irritable Bowel Syndrome (IBS) and Inflammatory Bowel Disease (IBD) sound very similar, but are in fact two very different disorders. To complicate things further, patients may actually have both diseases. Common symptoms for both disorders include abdominal pain, bloating and diarrhea. However, bloody diarrhea is rarely associated with IBS. The most significant difference between IBD and IBS is that Inflammatory Bowel Disease affects the actual structure of the intestinal mucosa and Irritable Bowel Syndrome does not.
Yes, about 20% of persons with ulcerative colitis 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 ulcerative colitis.
While the causes of ulcerative colitis 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 UC gene.
Ulcerative colitis may affect any age group, although there are peaks at ages 15 - 30 and then again at ages 50 – 70. Genetic, environmental, dietary, and immune system factors can all affect UC.
Genetic- Most often, the patient with ulcerative colitis will also have a relative with ulcerative colitis. The prevalence of ulcerative colitis is higher among white people of European origin and among people of Jewish heritage.
Environmental- Ulcerative colitis is more common in urban than in rural areas, and more common in northern than in southern climates. 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. Stress is another environmental factor that can negatively affect your disease. Notify your provider if you are having a difficult time coping with daily activities.
Dietary- Some people believe that ulcerative colitis may be triggered by the foods we eat. However, no studies have suggested that diet can either cause or treat ulcerative colitis 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 intolerance that may aggravate the GI Tract and worsen symptoms. Also, patients with UC have an increased risk for celiac disease and may have improvement of symptoms if they avoid gluten in their diet.
Inflammation- Research shows that substances in the intestine are mistaken for foreign or invading substances (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, the immune system causes temporary inflammation to help fight antigens, and then the inflammation subsides as you regain health. In ulcerative colitis, however, this inflammation continues long after your immune system should have finished its job.
Part 2: Diagnosis
Ulcerative colitis can be difficult to diagnose because symptoms can be similar to other intestinal disorders. An evaluation for UC will include a comprehensive medical history, physical exam, laboratory tests of blood and stool to evaluate nutritional status, renal and liver function, markers of inflammation and infection, and specific genetic components related to disease management.
Imaging is an important tool in evaluating the appearance of 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 of the disease.
Part 3: Treatment Options
Discussed in Part 5
Fecal Matter Transplant (FMT)
Discussed in Part 10
There are several types of medications used to treat UC. These medications work in different ways to reduce inflammation in the gastrointestinal tract.
The main classes of medications used in the treatment of UC 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 oral or topical form.
Ulcerative Colitis 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. 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 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 UC.
Part 4: Complications
Having Ulcerative Colitis does increase the risk for developing colon cancer. Regular colonoscopy screening for colon cancer will be part of your medical care. Be sure to complete screening as recommended by your provider.
Take medications as prescribed and report any side effects so that your disease can be managed properly. Report changes in your condition promptly. Eat a well-balanced diet and participate in regular physical activity to help maintain health. See your primary care provider for regularly scheduled health maintenance visits and remain current on all immunizations. Seek psychological support and counseling when needed to assist with daily coping with a chronic disease.
Part 5: Surgery
It is reported that up to 30% of all patients with ulcerative colitis will eventually need surgery. The most commonly performed surgery is called an ileal pouch anal anastomosis (IPAA). With this surgery, the entire colon and all or most of the rectum are removed. Next, a reservoir for stool is surgically created using the terminal ileum to create a pouch. This pouch is attached to the anus or a part of the rectum to allow the patient to pass stool normally through the anus. Most patients require the procedure to be done in 2-3 steps. There may be a temporary opening to the outside of the body known as an ileostomy, where the stool empties into a bag. This site is usually closed after about 8 weeks.
Some patients may require a total colectomy with a permanent ileostomy. In these cases, the anus is closed, and the outside site is permanent. The surgeon will discuss the options that are available for each person based upon the level of disease.
The pouch is a surgically created reservoir to hold stool prior to having a bowel movement. Since UC is a chronic disease of inflammation, it is possible for this area to become inflamed as well. It is important to take medications as prescribed by your provider and attend regularly scheduled follow-up appointments and screening procedures. Pouchitis may occur following ileal pouch anal anastomosis for chronic ulcerative colitis in approximately 30% of patients.
Part 6: Coping and Surviving
While research has not shown that stress plays a causative role in the development of ulcerative colitis, 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.
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.
Part 7: Nutrition in Ulcerative Colitis
Patients with Ulcerative Colitis may experience a loss of appetite resulting in a decreased nutrient intake. Additionally, inflammation in the bowel can lead to decreased absorption and metabolism of certain nutrients. Eating less and absorption of 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.
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.
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.
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.
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 8: Miscellaneous Issues and Resources
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 9: UC and Pregnancy
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 UC. 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.
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 UC, 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.
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.
Your IBD provider will meet with you and talk with you on an individual basis regarding what type(s) of UC 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.
For referral to see a GHN Specialist in our division:
Universal Referral Form