The Road to RemissionUnderstanding, Treating and Living with Inflammatory Bowel Disease

IBDCenterOrlando.com

As many as 1.5 million Americans currently suffer from inflammatory bowel disease (IBD), and 30,000 more patients are diagnosed each year.

This guide will help patients begin to understand their diagnosis and the medical management options of IBD, provide lifestyle tips for living with the disease and answer many frequently asked questions.

Table of Contents

2 INTRODUCTION & TABLE OF CONTENTS

3 Understanding IBD

3 Diagnosing IBD

4 Management & Treatment of IBD

4 Medical Management

5 Lifestyle Management

6 Keys to a Healthy Diet

7 Surgical Management

8 Endoscopic Management

8 Cancer Risk and IBD

9 Frequently Asked Questions

Understanding Inflammatory Bowel Disease (IBD)What is Inflammatory Bowel Disease?When learning about IBD, it’s important to understand that IBD is a collection of chronic conditions that include Crohn’s disease, ulcerative colitis and indeterminate colitis. Each of these may cause significant abdominal pain as well as diarrhea, unintended weight loss, and other uncomfortable symptoms as a result of an abnormal immune system response.

IBD is a lifelong condition typically diagnosed between the ages of 15 and 30, although patients are diagnosed later in life, too. While the causes of IBD are unknown, genetics and environmental factors contribute.

General Symptoms of IBD• Abdominal pain

• Vomiting

• Diarrhea

• Weight loss

• Rectal bleeding

• Joint pain and swelling

• Fatigue

• Multiple or recurrent mouth ulcers

• Anemia

• Iron deficiency

Diagnosing IBDPhysicians have multiple tools at their disposal when it comes to diagnosing or ruling out IBD in a patient. The first step in determining your condition is to complete a comprehensive medical history and physical exam. Your doctor may then order certain tests, such as:

• Blood tests

• Stool culture

• Upper endoscopy

• Colonoscopy

• Imaging studies (CT, MRI)

• Enterography

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MEDICAL MANAGEMENT

LIFESTYLE MANAGEMENT

SURGICALMANAGEMENT

ENDOSCOPICMANAGEMENT

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Management & Treatment of IBDWhile IBD is considered a lifelong condition, there are a number of ways physicians can help patients manage the disease so they can enjoy a better quality of life.

These treatments fall into four main categories:

Medical ManagementMedications used to treat IBD can be grouped into five categories.

• Antibiotics

• Aminosalicylates

• Corticosteroids

• Immunomodulators

• Biologic therapies

AntibioticsAntibiotics are frequently the first line of treatment for IBD patients, particularly those with Crohn’s disease who have fistulas or recurrent abscesses. In addition, antibiotics are the main treatment of pouchitis, which occurs in up to 70 percent of UC patients who have J-pouch surgery.

AminosalicylatesAminosalicylates are drugs that can be administered orally or rectally and have proven very effective in treating mild to moderate episodes of ulcerative colitis and Crohn’s Disease. They are made up of a special compound comprised of 5-aminosalicylic acid (5-ASA) and can help prevent relapses for patients in remission.

CorticosteroidsCorticosteroids, such as prednisone, methylprednisone and hydrocortisone, are powerful, fast-acting anti-inflammatory drugs. They are used in cases of moderate to severe IBD when the patient has not responded to 5-ASA drugs. Since these drugs trigger side effects, they are not conducive to long-term maintenance of disease activity in IBD.

ImmunomodulatorsImmunomodulators such as azathioprine and 6-mercaptopurine modulate the activity of the immune system and decrease the inflammatory response. These drugs have been used in IBD patients who 1) do not respond to aminosalicylates or corticosteroids; 2) Have steroid-dependent disease or frequently require steroids; and 3) have perianal disease and fistulas that do not respond to antibiotics.

Biologic TherapiesBiological drugs used to treat patients with IBD include Adalimumab (Humira®), Certolizumab pegol (Cimzia®), Golimumab (Simponi®), Infliximab (Remicade®), Natalizumab (Tysabri®), Ustekinumab (Stelara®) and Vedolizumab (Entyvio™). Biologics interfere with the body’s inflammatory response in IBD by targeting specific molecular players.

Lifestyle ManagementDiet and NutritionThe next step of your treatment may involve a discussion with your doctor about dietary modifications. While IBD is neither caused nor cured by diet, adjusting your consumption of some foods may very well help decrease your symptoms. Simply paying special attention to what you eat may in fact go a long way toward helping you feel better and promoting healing.

Your physician should also make sure you are getting the appropriate nutritional support to reverse any dietary deficiencies, as the disease makes it more difficult for your body to absorb vital nutrients from what you consume.

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Keys to a Healthy IBD Diet For patients whose symptoms are not active• Cooked Vegetables

• Dietary supplements

• Eggs

• Oats

• Lean Meats

• Olive Oil

• Poultry

• Skinless fruits

• Soy

• Water (8-10 glasses per day)

For patients whose disease is active• Avoid trigger foods

• Steer away from high-fiber foods

• Don’t eat nuts, sunflower seeds or popcorn

• Focus on low-fat foods

• Cut out the caffeine

• Limit alcohol intake

• Don’t eat spicy foods

• Avoid raw fruits and veggies

• Don’t eat prunes or beans

• You may need to cut out dairy

• If your body tolerates them, fish, soy and lean meats can be added

• Limit your portions at each meal, and eat more than three times per day

• Focus on fruit juices, bananas and applesauce

• Concentrate on eating bland, soft foods

• Eat plain cereal

• Refined pastas and white rice are good choices

• Cooked vegetables and skinless potatoes are OK

• Take medications and supplements as directed by your doctor

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Surgical ManagementMedications can control the disease in most instances. However, in severe cases where surgery does become necessary, the good news is that this method can potentially cure patients of the disease and allow them to return to an active lifestyle.

In cases where severe bleeding, illness, a ruptured colon or the risk of cancer is a factor, specialists may recommend removal of the colon. Another scenario where this might be the case is when drug treatments have proven ineffective or certain side effects threaten the patient’s health.

The most frequently turned to surgery is one in which the surgeon removes the colon and rectum in a procedure called a proctocolectomy. In this case, waste is rerouted from the intestine into a small opening on the right side below the midline. A special pouch collects the waste and can be emptied by the patient when necessary.

In a different surgical procedure, the surgeon creates a pouch inside the lower abdomen. This pouch collects the patient’s waste and can be drained by the patient via a tube that is inserted into a small opening on the side of the body.

Yet another type of surgery is the “pull-through” operation, where the surgeon creates a J Pouch and thereby allows the patient to avoid having a pouch outside.

Patients should talk to their physician and carefully consider their individual needs, personal lifestyles and expectations before deciding on a surgical route.

Some Crohn’s patients can benefit by having part of their intestine removed. However, it’s not unusual for inflammation to recur near the surgical site. A colostomy is one possible option. Here, the surgeon creates a small hole in the front of the abdominal wall and connects the tip of the intestine to it so that waste can be eliminated from the body at this point. A special pouch collects this waste, and the patient empties it as needed. In some cases, the surgeon only needs to remove the portion of the intestine that is diseased and reconnect the two ends that are remaining.

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Chromendoscopy

Lifetime Risks of Colorectal Cancer

WITHOUT IBD

(WHOLE LIFE)

20 YEARS

OF DISEASE

10 YEARS

OF DISEASE4%

2%

8%

18%

30 YEARS

OF DISEASE

Severe Crohn’s Disease

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Endoscopic ManagementStrictures in Crohn’s disease (CD) can grow natively, at sites of bowel connection after surgery or in the small bowel. Strictures are thought to be either inflammatory or fibrotic. While inflammatory strictures can be treated medically, fibrotic strictures are largely treated surgically with either intestinal resection or stricturoplasty. While stricturoplasty has the advantage of preserving bowel length, it has been associated with significant post-operative recurrence rates.

Endoscopic balloon dilation is used in addition to surgery and has the added advantages of reduced invasiveness and bowel preservation. The different management strategies include intralesional injection of medications such as corticosteroids and/or anti-tumor necrosis factor (after dilation) to reduce the risk of stricture recurrence and use of double balloon enteroscopy to access and treat distal small bowel strictures.

IBD patients who undergo J pouch surgery may also develop strictures within the pouch. The strictures can occur at the pouch inlet, outlet, afferent limb or pouch body. Endoscopic dilatation of pouch strictures is effective and safe with a low rate of strictures. Our team has extensive experience with the management of these post-surgical complications.

Cancer Risk and IBDBecause IBD patients face an elevated risk of developing colorectal cancer, regular cancer screenings are an essential part of any IBD treatment plan.

Endoscopy is an essential screening tool for the early detection and treatment of IBD-related tumors. The risk of progression to cancer has been well documented in patients with ulcerative colitis, with the cancer risk estimated to be 2 percent at 10 years, 8 percent at 20 years, and 18 percent at 30 years of disease. Also, patients with pancolitis are at an increased risk as compared to those with only left sided colitis. Patients with primary sclerosing cholangitis (PSC) and concomitant IBD (both UC and CD) are at an even higher risk of developing colorectal cancer as compared to patients with IBD alone.

The current standard of care in the United States for diagnosing tumors in the setting of IBD is to perform four quadrant biopsies during surveillance colonoscopy. However, enhanced-techniques such as chromoendoscopy, a dye-spraying technique that highlights the borders and surface of the potentially cancerous area, thereby exposing and outlining hard-to-find lesions, and high-definition imaging are being used to increase diagnostic accuracy.

Frequently Asked QuestionsQ1: What is ulcerative colitis (UC), and how is it diagnosed?UC is an idiopathic, chronic, inflammatory bowel disease (IBD) of the large intestine that causes both inflammation and ulceration of the lining of the rectum and colon. The primary symptoms of UC are diarrhea, rectal bleeding, tenesmus, passage of mucus, and crampy abdominal pain. Other symptoms may include anorexia, nausea, vomiting, fever, and weight loss. Although UC symptoms can present acutely, symptoms usually have been present for weeks or months. The severity of symptoms correlates to the extent of the disease.

Q2: Who is affected by UC? Approximately 1.5 million people in the United States are affected with IBD, and UC affects approximately 500,000 adults, with an incidence of 8 to 12 per 100,000 population per year and a prevalence of 80-120 per 100,000 people.

UC can affect men and women equally and at any age, but usually develops in young adults with a second peak between the ages of 60 and 80. UC has a two-fold increased frequency in Jewish populations with the highest prevalence in people of Ashkenazi Jewish decent.

Q3: What is Crohn’s disease (CD), and how is it diagnosed? CD is a chronic, progressive, immune-mediated inflammatory bowel disorder (IBD) of unknown origin. CD and ulcerative colitis (UC) are the major forms of IBD. Patients with CD may present with a variety of commonly seen signs and symptoms, and CD can lead to numerous complications.

In the absence of a single diagnostic gold standard, the diagnosis of CD is based on the patient’s history, physical exam, laboratory tests, and a review of endoscopic, radiographic, and pathological findings. Because symptoms of CD resemble those of other conditions, referral to a specialist is key to proper diagnosis.

Q4: Who is affected by CD?CD affects an estimated 907,000 Americans. Onset usually occurs in late adolescence or early adulthood, with the median age at diagnosis being 30 years. North American incidence ranges from 16.7 to 318.5 cases per 100,000 people in North American populations. CD may occur at any age, but most often occurs in young adults. CD prevalence rises with age. Risk factors for CD include family history, being of Jewish ancestry and smoking.

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Q5: What is the risk for IBD patients developing colon cancer?Patients with UC or CD involving the colon with longstanding colitis are at greater risk of developing colon or rectal cancer even if the disease is in remission. The two most important factors that are associated with increased cancer risk in IBD patients are duration of the disease and the extent of colon involvement. The risk for colorectal cancer doesn’t start increasing until eight years after you develop CD or UC, and patients whose entire colon is involved or with more than one-third involvement of the colon have the greatest risk.

Other Risks

Another potential complication of IBD is primary sclerosing cholangitis (PSC), which is a chronic liver disease that causes bile duct inflammation. If you have either PSC or a family history of colorectal cancer you may have a higher risk of developing colorectal cancer before the eight year period.

Patients with a family history of colon or rectal cancer and those who develop IBD at a younger age are at an increased risk for developing colon cancer over time.

Q6: If I am in remission, is my risk of developing colon cancer lower? Yes. When you’re in remission, the microscopic inflammation in your colon is likely lower, which in turn reduces the likelihood of colon cancer and even pre-cancerous changes—known as dysplasia. However, the risk is still higher than for the general population.

Q7: What should I be on the lookout for in terms of common indications of colorectal cancer?Some symptoms of colorectal cancer are difficult to assess in people with CD or UC, because of their similarity to symptoms of an IBD flare-up. However, be aware of the following:

• Change in the frequency of bathroom trips

• Diarrhea, constipation, or feeling unable to empty your bowels

• Bright red or very dark blood in the stool

• Weight loss with no known reason

• Constant fatigue

Q8: How often should patients with IBD undergo colonoscopy? Professional societies recommend that after living with the disease for 8 years, IBD patients who have one-third or more of their colon involved should have a colonoscopy every year. For patients with primary sclerosing cholangitis, these colonoscopies should begin as soon as IBD is diagnosed and be repeated every year thereafter.

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Q9: Are there any other effective screening methods available to patients?In the past, gastroenterologists would take numerous biopsies to exclude the presence of precancerous changes. However, with a new technology called chromoendoscopy, cancers can be detected much earlier and more effectively compared to routine colonoscopy.

Chromoendoscopy is a technique that uses a dye called indigo carmine to enable better visualization of the colon wall lining. In fact, the likelihood of finding an early cancer increases 2 to 3 fold.

Q10: What have recent studies found about the relationship between IBD and colon cancer?New evidence shows that surveillance colonoscopies reduce the likelihood of developing colon cancer. Better endoscopes and newer endoscopic techniques (like chromoendoscopy) enable the detection and successful removal of small precancerous polypoid lesions that may progress to cancer using techniques such as endoscopic mucosal resection (EMR).

Q11. What happens after chromoendoscopy?Depending on your symptoms and findings at colonoscopy, your doctor will make further recommendations on whether you can be observed (surveillance) or you need to undergo surgery.

Q12. What is surveillance? When lesions are removed by EMR, it will be necessary for you to have a follow-up procedure to re-examine the area of resection and confirm that there is no recurrence of the lesion. The frequency of surveillance will be determined by the biopsy results. If the biopsies are normal, a surveillance procedure will be required every year. Your doctors will be happy to answer any questions that you may have regarding your follow-up.

Q13. What are the other types of cancers that IBD patients are at risk for?Patients with IBD who have Primary Sclerosing Cholangitis are at increased risk for developing cancer of the bile duct (cholangiocarcinoma). Early diagnosis of these cancers is essential to start appropriate treatment.

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