NIMBAL Therapy

Author

Preface

Each year tens of thousands of individuals are diagnosed with inflammatory bowel disease, or IBD, in the form of ulcerative colitis and Crohn’s disease. Currently, there are an estimated 1.3 million individuals in the United States with IBD. The incidence of IBD continues to rise in America, and a major culprit is our food environment. Our diets directly affect our fecal microbiomes and the hundred trillion bacteria that naturally reside in our digestive tracts and bowels. With IBD, what we eat can cause these bacteria to get out of balance and thus trigger our immune systems to attack the bowels.

Poor nutrition also profoundly impacts an individual’s overall well-being, ravaging not only our energy but also profoundly affecting every organ system within our bodies. But in spite of their obvious importance, nutrition and diet are often overlooked in the worlds of medicine and science.

This book is the realization of a long-held dream by me and many at Seattle Children’s Hospital to support patients and families interested in pursuing nutritional and dietary management for IBD. Nutrition in Immune Balance (NIMBAL) therapy is a standardized method to incorporate dietary therapy into the current medical paradigm. This book is only a first step in developing a standard approach to dietary intervention in IBD; much more research and knowledge still need to be gathered to optimize dietary approaches for IBD patients.

As with every aspect of medicine, diets often need to be individualized for each person and situation. This book is designed to assist patients with IBD, their families, and their healthcare providers on how to begin approaching and using dietary interventions and treatment.

I would like to recognize the many people who have helped to make this book possible through their continued support, content, and review.

David L. Suskind, MD

Seattle, Washington

May 5, 2015

Acknowledgments

Much appreciation to Tali, Shai, and Gil Guday for their strength, insight, and commitment to using diet as a treatment for IBD. Also major thanks to Mi Ae Lipe and Lisa Gordanier for their astounding abilities, diligence, and dedication to this project, and to Rebecca Davis for her expertise in wordsmithing.

Appreciation also to Travis Bettinson and all of the SCD families for their many delicious recipes.

And finally to the most amazing pediatric IBD team at Seattle Children’s Hospital—Ghassan Wahbeh, Kim Braly, Nila Williamson, Teresa Wachs, Dale Lee, Matt Giefer, Chinonyelum Obih, Heather Nielson, Jani Klein, and the wonderful Heidi Zogorski.

Disclaimer

This book is designed to assist patients, parents, and healthcare practitioners with the dietary management of inflammatory bowel disease (IBD). It is intended to be a reference only and not an in-depth review of either nutritional or medical issues that occur in IBD. This book is an educational resource only, and none of its content is meant to be a standard of care. The author would like to acknowledge Seattle Children’s Hospital for its continued commitment to the importance of nutrition in pediatric health.

A Note to Our Readers

This book has been written for both pediatric patients with IBD and their parents, and we freely refer to both throughout the book, sometimes going back and forth within a chapter. We also prefer to not refer to an individual child as an awkward he or she; instead, we often switch to the generic plural pronoun they or their within a sentence. Or we may refer to a child as he in one paragraph, and she in another. With this language, in no way do we intend any preference of one gender over the other.

Inflammatory Bowel Disease:

An Introduction

Inflammatory Bowel Disease: An Introduction

What is inflammatory bowel disease (IBD)?

Our bodies have many systems that keep us healthy and living. One of these is our immune system, which helps prevent as well as fight off infection, protecting us from serious illness. It keeps us from getting simple infections like the kind you can get by cutting yourself, and it protects us from potentially life-threatening infections such as pneumonia and meningitis. It doesn’t always work perfectly, but it goes a long way in keeping us safe from harmful events and illnesses.

Unfortunately, sometimes the immune system forgets its role. Instead of protecting us, it starts to attack us. This is called immune dysregulation.

Inflammatory bowel disease is one example of that.

Why does this occur?

We don’t know with perfect certainty why someone gets IBD, but what we do know is that our genes play an important role in the development of the disease. Some of us have a genetic predisposition to IBD, meaning that the genes that make up our immune system lead our immune systems to more likely attack our bowels. IBD is associated with more than 160 different genetic changes, and most of those are related to the immune system. But genes by themselves don’t cause IBD. For many millennium, our genes have been the same or very similar to our ancestors. However, our ancestors did not have nearly the same incidence of IBD as we see today.

Additionally, studies show that the incidence of IBD rises significantly depending on where you live. For example, if you are born in India and move to the United Kingdom as an adult, the chances of developing IBD are low, similar to people who stay living in India. But if you are the offspring of that person and thus were born in the UK and grew up in the UK, then your chances of developing IBD become much higher—equal to that of the families around you. Both of these facts point to the assumption that there may be an ecological or environmental trigger for IBD. Although scientists are still searching for the key trigger, mounting evidence indicates that it may be fecal dysbiosis, or bad bacteria in our intestines. More about this later.

A couple of important facts about IBD

We know that immune dysregulation disorders such as inflammatory bowel disease are on the rise. This has been true for several decades.

We also know that these disorders are much more common in industrialized countries than in less economically developed countries. In the United States alone, over 1.3 million people suffer from IBD. The most susceptible population? Young adults and teens. At least 100,000 children under the age of 18 in the United States have been diagnosed with IBD.

What are the types of inflammatory bowel disease?

Two main subtypes of IBD exist: Crohn’s disease and ulcerative colitis. Both are characterized by an attack on the bowels by the immune system, causing the harmful inflammation in IBD. The two subtypes differ in where the attack occurs, how the patient is affected, the way each progresses clinically, and how the disease looks to the healthcare provider.

Crohn’s disease

In Crohn’s disease, inflammation can occur anywhere from the mouth to the anus. Inflammation can result in stricturing (narrowing of the bowels) or the formation of abscesses and fistulas, which are abnormal connections between the bowels and the skin, bowel, or organ. Crohn’s disease is usually described as being patchy, involving just one part or many parts of the bowels.

With Crohn’s, people can experience a variety of symptoms, which usually depend upon what part of the bowels is affected and how much inflammation is present. Some individuals may have recurrent oral ulcers that can make eating uncomfortable.

If the stomach or duodenum (first part of the small intestines) is affected, people can have pain in their upper abdomen. The small intestine (which is made up of three parts—the duodenum, jejunum, and ileum) is the longest part of the intestines but has the smallest diameter (thus its name small intestines). Its main job is to absorb nutrients. When this is affected, people can develop significant abdominal pain as well as nutritional deficiencies and weight loss. The small intestine is affected in approximately two-thirds of people with Crohn’s disease.

The colon is the last part of the intestines before the stool leaves the body. It is called the large intestine because its diameter is bigger than that of the small intestine. One of the colon’s many jobs is to absorb excess water in the stool. When the colon gets irritated or inflamed, people usually develop diarrhea and cramping with bowel movements. If the rectum (the last part of the colon) gets irritated, it sends messages to the brain that there is still stool within it.

Therefore, patients often complain about the need to go the bathroom without anything or just a small amount of stool coming out. This is called tenesmus. When the colon is affected, a fair amount of blood can sometimes leak into the stool; therefore colonic disease is characterized by bloody diarrhea.

While medicines are effective in treating it, active Crohn’s disease also carries a high likelihood of the need for surgery within five years of diagnosis. This surgery will not, unfortunately, cure the patient of his or her Crohn’s.

Ulcerative colitis (UC)

In ulcerative colitis (UC), inflammation is present within the colon (large intestines) and is contiguous, meaning that it starts at the rectum and continues without interruption through the colon. For some, only a small part of the colon is affected. If the inflammation is in the rectum, it is called proctitis. For others, the entire colon can be involved. This is called pancolitis. Symptoms of ulcerative colitis are the same as if someone had Crohn’s colitis, with symptoms dependent on the degree and extent of disease. Unlike Crohn’s disease, if you have surgery to remove the colon to treat the UC, the disease can be cured.

Other IBD manifestations and factors

While we talk mostly about two types of IBD—Crohn’s and ulcerative colitis—in truth, the term represents many different types of bowel disease, and each individual is unique in their presentation, response to medication, and journey. With that said, there are commonalities for individuals with IBD, and long-term observation has taught us a lot about the disease. Our ever-expanding technology gives us more tools to determine genetic and environmental influences on diseases and how they express themselves in each of us.

For example, we know that if you smoke and have Crohn’s, your disease is far more difficult to treat. If you are a smoker and have UC and you stop smoking, there is a higher likelihood that you will have a flare-up of your symptoms. (Of course, it is best to stop smoking to improve overall health.)

We also know that IBD is more common in the northern hemisphere than in the southern one. If you have the genetic abnormality NOD2, your disease is more likely to be in the ileum, or last section of the small intestine. Younger children usually present with more aggressive UC than their adult counterparts, and more often than not, pediatric UC affects the entire colon.

Most importantly, no matter how much we know about epidemiology and science, IBD is highly personal and specific to each individual. One person’s experience with ulcerative colitis or Crohn’s is not necessarily identical to another’s.

Handling the Diagnosis

What happens now?

The more you know, the easier it will be.

A diagnosis of inflammatory bowel disease can be overwhelming. It can be a shock, and it can be depressing. But the first thing to say to yourself is, We have a problem, we are going to handle it, and we are going to find a way to solve it the best way we can. Being proactive, believe it or not, is halfway to a cure.

One of the most pressing questions you’ll have is, how exactly will this affect my child’s life?

There are a few answers. A good place to begin is with your healthcare provider. Ask the questions you need answers to (writing them down beforehand helps). If necessary, be self-assured enough to say, I really don’t understand what you’re saying, or Perhaps you didn’t really understand what I was asking you. The more honest you can be, the clearer you are, and the more likely you’ll get the answers you need.

Read—a lot. Find out from those who have gone through this before which books and resources they found most helpful. Here, I would caution about the Internet. I have found more misleading than factual information online, and this sometimes leads newly diagnosed families to panic. Don’t panic—join support groups instead. Sometimes reassurance comes not just from what you hear in these groups, but from being with others who are going through the same experience—because while you’ll learn from them, they will also learn from you.

It is impossible to become an expert overnight

Over time, with the support of friends, family, your medical healthcare practitioner, and especially others with inflammatory bowel disease, you will understand the disease, you will be able to help yourself and your child, and both of you will live a healthy, happy life, even while living with IBD.

Let me tell you my story

Right after my twelfth birthday, I was diagnosed with Type 1 diabetes. My family was overseas at the time. The first indication that something was amiss was when I got so angry waiting for dinner that I kicked the tires of somebody else’s car. Because I was always the nicest, most polite child in our family (well ... that’s the way I remember me, no matter what my brother and sisters say!), this was quite unexpected behavior from me.

After watching me attack the defenseless tires, my mother’s first thought was, Ah, the beginnings of puberty! Not so. Two days later, a friend who was a doctor heard about what happened and was also told that I was constantly complaining of being thirsty. He said, I think we ought to do a urine test. My mother said she didn’t think