Dr. Kane: IBD is inflammatory bowel disease. IBS is irritable bowel syndrome. And so when you talk about inflammatory [bowel] diseases, you are talking about inflammation, and we are talking generally about ulcerative colitis or Crohn’s disease.

When you talk IBS, a syndrome is a constellation or collection of symptoms. And there doesn’t necessarily have to be anything anatomically wrong with that person who has a syndrome. And so, in IBS in particular, you have irritability [of the bowel], a lot of symptoms that sort of come and go, but there [are] no tis sue abnormalities [as there are in ulcerative colitis and Crohn’s disease].

And a lot of the same symptoms that you may have with active colitis or Crohn’s disease, patients with IBS also can have. You’re not immune to IBS if you have IBD. You can have both. And so that’s one of the things that we’re going to talk about is how you can tell the difference between what’s going on in your bowels that day. Is it active inflammation, or is just being irritable for the day? So you can have both.

Dr. Kane: There are about a million cases [of inflammatory bowel disease] in the United States, and it’s basically split 50/50 between ulcerative colitis and Crohn’s disease. gastroenterologists, in general, will diagnose 10 new cases per 100,000 per year. And it’s interesting because that number in [Crohn’s disease] (CRD) is actually going up. And it used to be that we used to say seven cases per 100,000. Now we’re sort of starting to round it to 10, but there are some areas of the country where we say it’s 13 per 100,000 per year. And we’re not sure why it’s increasing and whether it’s because we’re smarter or we have better techniques to detect it, or whether people are really just getting it more often, we’re not sure.

The peak onset happens anywhere between 10 and 19. This is a disease of the younger population, but you don’t die of CRD or ulcerative colitis. You carry that diagnosis through your life. So you do end up in the adult gastroenterologist office. And because you don’t die, more and more people are going to have this every year because new diagnoses are being made, and so you just sort of add to the collection pool of patients. And there are some people who are so young, below the age of five who are diagnosed, and that’s about 2 percent of cases.

What are we talking about when we are talking about the scope? [There are about] 700,000 physician visits per year and 100,000 hospitalizations per year. And it’s interesting because a lot of those hospitalizations now are not for the really bad ulcerative colitis where you have a perforation. So, fortunately, we’re making great strides in keeping people out of the hospital for those really dire emergent bad outcomes. But people are still getting hospitalized, so obviously we have a far ways to go in terms of how we treat our patients.

[What is] the long-term outlook? Well, it’s a chronic, lifelong disease without medical cures. That’s a very heavy statement to tell somebody. But, you have to think of hypertension and diabetes and asthma. Those are lifelong, chronic incurable conditions that we don’t have medical cures for. Most things that a physician takes care of don’t have cures. We manage patients, we treat patients, we try to improve their lives and prevent complications, but hardly ever do we talk about the word "cure." It’s a four-letter word, especially in a gastroenterologist’s office.

Surgery for Crohn’s patients still happens in upwards of 80 percent of people who have Crohn’s, and that number hasn’t changed. What has changed is the reason why you would have an operation. With the introduction of Remicade [infliximab], back in 1998, we thought, “Oh, we’ll do away with all surgery because it’s such a great drug.” Wrong. We’ve just have changed the reasons why patients with CRD need to have operations. Believe me, our surgeons are very, very busy even though we have all of these great new therapies.

Two percent of ulcerative colitis patients are going to need an operation, meaning they have their colon taken out during their lifetime. That’s the minority, so you have to think about the flip side that 80 percent of patients will die with their colon intact. And most importantly, is that the majority patients have normal productive lives.

There is a certain percentage of patients that have indeterminate colitis. So who has indeterminate colitis? Patients who have inflammation of their colon, and when you look at it with a scope the gastroenterologist can’t tell whether it’s ulcerative colitis or CRD. The small intestine is normal, and so you really can’t tell one way or the other. And it’s unfortunate, but it’s the reality. So some people just don’t fall into neat little pigeonholes.

Dr. Kane: Who gets inflammatory bowel disease? Well, it turns out that it is an international disease, but you will notice that a few people have it in Australia, a few people in South Africa, but the majority have it in northern Europe and in North America.

You may have heard rumblings about treating people with worms for their inflammatory bowel disease, and I’m sure we’re going to get questions about worms. Why would people take worms, eat worms on purpose? Well, if you look at who doesn’t get inflammatory bowel disease - people in China, people in India, most of the continent of Africa - it’s because, we think, they don’t have proper indoor plumbing. And these are people who are very exposed to infectious diseases, and there is something different about their immune systems of their gut. So [the theory is] maybe if we were dirtier and introduced bugs that maybe our colons wouldn’t be so unhappy and attack itself, but it would have something else to do. So it would attack bugs. And it works. Eating worms can actually treat your IBD. My boss, Dr. Hanauer, when his patients ask him, “How can my children avoid getting this?”, he says, “Let them eat dirt.” So keep yourself dirty.

Dr. Kane: We get asked every day, “What caused my IBD?” It wasn’t something that you did or didn’t do. This isn’t your fault. That’s the first thing you have to remember. And, boy, if we had the answer to this, we’d be on way to Stockholm to get our Nobel Prize in Medicine. We don’t know. What we do understand is that it’s a combination of things and that it really is an interplay between genetics, the immune system and the environment.

So what does this mean? It doesn’t mean that this [is a] genetic disorder. It’s not one gene that if you can just replace that gene that you would be fine. It doesn’t work that way, but we understand that there are several different genes that are responsible for the interaction of the immune system with bacteria and the immune system with different signals and proteins and inflammation and that they seemed to be targeted towards the gut; that the immune system has to somehow be either revved up or as unable as it is to unrev itself and that there is something about the environment. And the environment can be the environment of your gut or the environment around you. The environment of your gut is the bacteria and the viruses that live inside of your gut, and the environment that’s also the external environment, [e.g.] smoking.

The one gene that we have actually been able to really pinpoint, and it’s interesting because two different sets of investigators almost simultaneously, in different parts of the world, both came up with this non2 gene and showed by different techniques that this one is very connected to CRD. And so, if you have one copy of this mutated gene, the non2 gene, you have upwards of fourfold increased risk for developing CRD. If you have two copies of this mutated gene, your risk goes up almost fortyfold. Now, that sounds really, really bad. But only 10 percent of patients who [have] CRD carry two copies of the mutated gene. Well, what about the other 90 percent? We don’t have an answer for that yet, so that’s why I say this isn’t the genetic disorder like you would think about you know other genetic disorders. We understand that there are genes that are associated but not causative. Twenty-eight percent of CRD patients carry one of the mutated genes. So it’s still the minority taken all together who actually have a mutated gene of this non2.

What do we know about the environment? We know that stress plays a role on the entire body and, that in certain stressful situations, you’ll get butterflies in your stomach. You feel nervous, and you get nauseated. That’s the body's response to stress. That has nothing to do with whether you have active or inactive Crohn’s or colitis. Nonsteroidal anti-inflammatory medicine - ibuprofen, Motrin, Aleve, naproxen - all of those pain relievers that you take for your headaches, joint symptoms, can actually cause inflammation and cause ulcerations. These are medicines that can give you stomach ulcers and stomach problems. They can cause ulcers in your stomach, your small intestine and your colon. They are to be avoided because it can actually make your colitis or Crohn’s worse.

If you travel to Mexico or Egypt or Bahamas, wherever, and you pick up traveler's diarrhea, that can trigger your symptoms. Certain antibiotics [can trigger symptoms as well]. We say that “illins” are the villains: Penicillin, amoxicillin and ampicillin can actually cause your disease to flare. So if there are alternatives for whatever symptoms you have or infection that you have, we prefer other alternatives. And, actually, we prefer people don’t take antibiotics at all unless they truly have a sinus problem or pneumonia. A lot of us take antibiotics for the flu or for a cold when it’s not really necessary.

Dr. Kane: Diet: If I had a nickel for every time somebody asked me about diet and what it does, I would be able to start my own foundation. Why do we have a red apple sitting here? Well, an apple a day keeps the doctor away because they, particularly the peels, have a lot of fiber in them. And peels are an entity that the human body cannot digest. We can chew it, we can swallow it, but we can’t process or digest it. So if you’re into looking at your stools, you will see that you can see the actual peel, maybe in smaller bits, but you’ll see apple peel. Well, why is that bad for somebody who has Crohn’s or colitis? If you have inflammation in your small intestine or your colon, that lining gets very sticky. And things that you can’t digest will stick. So it’s sort of like beaver building a dam. You have the leaves and twigs, and they just sort of build up, so the same thing will happen in your small intestine and your colon. And so you end up feeling crampy and very full and bloated.

If you eat things that your body cannot digest, those are good things if you don’t have colitis or Crohn’s because it flushes out the system and scrapes along the system and gets rid of a lot of extra stool, but you don’t want things that are scraping along the lining. Corn is not a vegetable. Corn is a grain. And if you eat corn on the cob, the kernels, you’ll chew them, but you’ll seem them whole. Prunes have an inherent effect on the human gut, which is to create a bowel movement.

So there are foods that have inherent effects on the GI tract. So when you talk about diet, you have to talk about what it is that [a particular] food may do to the gut, regardless of whether if you have Crohn’s or colitis. Certain foods that you put in your mouth are going to make you uncomfortable. They’re not necessarily going to make your disease flare, but you have to understand the difference. And what some people may tolerate others won’t. A lot of people are erroneously told to not have milk or dairy products because it’s going to make them worse. And unless it truly does make you worse, you shouldn’t avoid those things because it’s a great source of protein, calcium and vitamin D.

Dr. Kane: If you are a female that smokes, you are in the worst disease category that there is. Every complication there is will happen to you worse - that you need steroids more often, you need surgery more often, that the disease will recur more often, and it’s just overall a bad situation. So smoking makes Crohn’s worse. So if you have Crohn’s, the one thing that you can do for yourself is to stop smoking. And it’s not easy, but you can actually avoid surgery, and you can avoid certain medicines by just quitting smoking. Unfortunately, smoking makes ulcerative colitis better. We understand that people who quit smoking will develop ulcerative colitis [flares]. So if you smoke, you are protected against ulcerative colitis. And we have patients who quit smoking, developed their ulcerative colitis, flare and then go back to smoking because it actually puts them into remission. And whether that’s a good idea or not, it’s out there, and I won’t make any kind of statements about how ethical that is.

But understand that if you have Crohn’s, it’s going to get worse by smoking. If you have ulcerative colitis, then it would get better, but that’s not necessarily a good alternative. If you fit into that category in indeterminate colitis, the first, one of the first questions we ask is, “Did you smoke, or do you smoke?”, because that is such a reproducible phenomenon - if you said that you used to smoke and now you don’t. In Crohn’s disease, I’ve already said, and I can’t say it enough, that you have a twofold risk of developing Crohn’s if you smoke and that smokers are less responsive to any treatment that you get. And they’re more likely to develop recurrence of the disease after their surgery. And, again, women are more at-risk than men for any of these bad outcomes.

Dr. Kane: So let’s move towards the patient and how you’re going to get diagnosed. How does a physician make the diagnosis? Well, first of all, actually, there are some great clinicians who say that you can make any diagnosis of any condition based on taking the right history, that 90 percent of the time the patient will tell you what their diagnosis is if you ask the right questions. So a clinical history is key. What’s going on in your family? Where have you lived? What drugs do you take? Are you a smoker or nonsmoker? Those are all part of the clinical history.

There are certain very common lab tests, and then there are some uncommon ones that doctors will do. We’re in the business of scoping. So you bought yourself a scope, whether it’s the stomach, or the colon or both - it’s usually both. And sometimes, Crohn’s can be crafty, and it’s in that 30 feet in between the small intestine, so we do the X-rays.

And now we’ve got the little video camera that’s about the size of a dime. And you can swallow it, and it takes four hours' worth of film, and we can see ulcers in the small intestine. And when we’re in there with our scopes, we can take tis sue samples, and that’s really a very good way of trying to tell whether there is chronic inflammation versus normal under the microscope. Unfortunately, that video capsule cannot take biopsies yet. So it is not a replacement for a colonoscopy. We get asked all the time, “Do I really need a colonoscopy? Can’t you do a picture? Can’t I swallow the capsule? Can’t I have a virtual colonoscopy?” And the answer is no, because none of those techniques are going to be able to actually sample the tis sue.

Why are we doing the colonoscopies? It is because is allows us look at the tis sue of the colon, as well as the small intestine, and the key is that it allows us to get biopsies. And we can see how inflamed the tis sue is. Patients may say, “Gosh, I I’m only having three bowel movements a day, it’s not so bad - a little bit of blood.” And we look inside, and it’s all inflamed and looks terrible, and we think how on earth can this patient not feel more poorly? And then, on the other hand, there are patients who just can’t even get out of bed. They feel horrible, they’re fatigued, and we scope them, and it looks almost normal. So there’s no actual direct correlation between what the bowel looks like and how symptomatic the patient may be, which goes back to the relationship you have with your gastroenterologist. The other important thing colonoscopy can do is, over time, get tis sue biopsies to make sure there are no pre-cancerous changes in the tis sue so that we can prevent cancer.

Dr. Kane: In ulcerative colitis, we talk about three kinds of patients. [One is] the patient who has inflammation just in their rectum. We can call it rectitis, but it’s called proctitis because only the rectum is involved. That’s about a third of patients. They have ulcerative colitis, but it’s limited to the rectum. It’s just another way of describing what’s going on in your colon. A third of patients have their disease just on the left side, and we call left-sided colitis. And then another third have it throughout the entire colon [pan colitis]. So it’s your whole colon. It’s just a way of sort of describing where the inflammation is.

What are some of the symptoms? The most common symptoms that you can have are rectal bleeding and urgency to evacuate. I think those are pretty self-explanatory. [There is also] diarrhea, abdominal cramping - not pain like you would have pain with appendicitis or pain like you would have chest pain if you were having a heart attack, but cramping. I think most people would recognize the difference. If you have to go to the restroom real badly, you’ll have this sudden cramp and urge, and then the cramp goes away after you’ve evacuated. In ulcerative colitis, we also want to know about joint swelling and pain, eye inflammation and then the skin lesions.

One of the other very common symptoms of ulcerative colitis is constipation. It’s interesting because the rectum really is the boss of the whole body. And it’s very smart, if the rectum is unhappy the rest of the colon says, ”Well, we’re going to let that rectum rest. And we’re not going to bother it. It’s hopefully going to get better on its own.” So, if your rectum is really inflamed, the rest of your colon says, “We’ll just hold onto this stool and not send it to that irritated inflamed rectum,” and so you can have constipation and a little bit of rectal bleeding and have proctitis. So don’t think you have to have diarrhea, and that’s the only way you’re going to get your diagnosis. Constipation is another way of presenting ulcerative colitis.

Dr. Kane: When we talk about Crohn’s disease in the upper GI tract, we’re talking about basically the esophagus, the stomach, and then the first part of the small intestine that’s called the duodenum. So the small intestine is divided up into three parts: the duodenum, the Jejunum and the Ileum. The most common place to have Crohn’s disease is in the Ileum, the terminal ileum. And then a third of patients will also have it in their colon. So you may hear your doctor say, ”Well, you have ileitis or terminal ileitis or that you have illeocolonic disease.” You can have inflammation in your colon that’s CRD of your colon. You’ll hear physicians talk about Crohn’s disease based on the location. And a third of the time it will be limited to the colon, but the majority of patients who have Crohn’s disease have at least some part of their small intestine involved.

[One of the symptoms of] Crohn’s disease [is] diarrhea. You’re not going to get very much constipation in Crohn’s disease because it’s the small intestine more likely to be involved. And when your small intestine is inflamed again, it’s the part of the body that tastes everything. And if it’s inflamed, it doesn’t want to taste anything. And it just sends everything through, and you evacuate, and that’s what the diarrhea is. In Crohn’s, you will actually get abdominal pain, like appendicitis or a gallbladder attack or angina like a heart attack. And why do you have pain and not just cramping? Because in Crohn’s disease the inflammation goes through all of the layers of the bowel wall, not just the inner lining and not just the muscle lining but the actual outside lining, which is where nature put the fibers to detect true pain. And why is that a defense mechanism? [Because] if you irritate those pain fibers on the outside of your intestine, there is something really wrong with you, and so that’s why you get true pain, and when somebody presses or you press on yourself you get tenderness. You’ll lose your appetite, and you’ll lose weight because you’re unable to absorb the calories that you’re eating. They’ll just go right out.

Fever [is another symptom] because it’s an inflammatory response. Fatigue, because maybe you’re getting anemic or just because of all the proteins and the active inflammation that you have all of these evil humors floating around, and you’ll get fatigued.

You may have bleeding and ulceration if the Crohn’s is involved in your rectum. And interestingly enough, stunted growth or growth failure in children can be the only symptom that they have. They may not complain of belly or tummy aches. They may not complain of bleeding. But they fail to grow appropriately, and that can actually be the way they present.

Dr. Kane: In Crohn’s disease, because you have inflammation that goes all the way through the layers [of the bowel wall], you can develop abscesses. Because when you eat through all the layers, when you break through the wall, all the bacteria that’s inside your intestine now sort of goes out into the abdominal cavity, and you develop an abscess.

You can perforate because you’ve now blown open a hole in your small or large intestine. Or you can develop what we call fistulae, which is an abnormal connection between two different parts of the body. You have this chute now that connects a part of your small intestine to somewhere else. If it’s to the colon, then material shoots right through there, and again it bypasses a lot of where it needs to be absorbed and you end up with diarrhea. If there’s a fistula from the small intestine to the outside body wall, you can have fistulae, and you have stool coming out of part of your body. In [a] woman, you can have a fistula that connects the rectum and the vagina because of the anatomy. And, because you have inflammation throughout all the layers, over time if this is very smoldering, quiet disease, your body’s response is to try to form a scar. So that inflammation and scar tis sue, over time, keeps building and building, and you end up with a stricture or narrowing because of all the scar tis sue that’s built up.

What can happen is you can have what we call "fissures." Fissures are little cuts in the tis sue and can create a lot of pain and bleeding. Skin tags are just little growths of extra skin on that look like hemorrhoids but are not hemorrhoids and should not be removed. We see a lot of patients who, unfortunately, go to a very well-meaning, well-intentioned surgeon or doctor and have their hemorrhoids removed, and later on down the road they develop horrible scarring. Or it never heals, and they have ulcerations. And it’s because what they really have is Crohn’s disease, and the chronic inflammation creates a situation where you cannot heal.

When we have a patient who comes in who has an abscess in their perianal or perirectal area, we can just look at the patient. And they're walking like this, and when they sit down on a chair, they’re sitting like this, they can’t put pressure on their bottom, and you don’t need any other kinds of tests. They’ve got an abscess, and you call your surgeon right away.

Dr. Kane: Let’s take a minute to talk about osteoporosis. steroids can weaken the bones, and steroids do that within six weeks of taking steroids. And it doesn’t matter what dose you’re on, the more you take, the worse off you are, but even small amounts, you’re still at-risk. So don’t think that just because you’re on only five or only 10 that you’re not at-risk for osteoporosis.

Now, there are patients who have trouble getting off of steroids, and some people don’t have alternatives, but it’s something that we always have to be mindful of because osteoporosis doesn’t hurt. Arthritis hurts, osteoporosis doesn’t hurt. It only hurts after you’ve fallen and broken your hip. And hip fracture is one of the leading causes of actual in-hospital mortalities that there is. So we don’t want 15 years from now for you to break your hip because of what we did to you 15 years ago. So we have to be mindful for future therapy.

Osteoporosis happens in steroid use, but it also happens in smokers. So here’s another reason you have to give up your cigarettes. When you have very active disease, you have a lot of evil humors that attack the skeleton and in women when you reach that postmenopausal stage of your life. Women who have other family members who have osteoporosis, just because of the family they were born into, osteoporosis becomes an is sue.

Dr. Kane: The majority of the patients we have a diagnosis for, about 10 percent, we have this indeterminate colitis, and maybe we’re not sure what we should give those patients. But, basically, we have an idea of what the patient has, and it’s important for physicians to keep these goals in mind - not only to relieve the patient’s symptoms, but we want to treat that inflammation, and we want to treat the complications if they’re already present. But, hopefully, we’re not treating complications. We’re trying to be thoughtful enough to prevent complications. We want to try to minimize the toxicity, first do no harm. We want to try to maintain that remission as long as we can.

If people are underweight or malnourished, we want to try to replenish them in the most efficient way we can. We want to improve daily functioning. [We also want to] detect dysplasia, which is pre-cancer, rather than detect cancer itself. But, certainly, we want to be mindful of how we’re going to do that. And importantly, [you have to] address some of the psychosocial is sues because you’re not just a sick colon walking around. You are a person who has family obligations and social obligations and obligations at work or within the family, and sometimes that other family member’s health has to come before your health, and we have to be mindful of that.

At diagnosis, [there should be] time spent with you to go through an explanation of the disease with opportunity for you to ask your questions. And this isn’t going to happen at a one-time 15-minute appointment. It’s hard sometimes to have long-term follow-up because your insurance plan changes, and you're forced to leave your doctor, or your doctor moves out of the area, and you’re forced to see somebody else. But there should be continuity of care because you have disease that is going to be with you for a long time. And the patterns can change, and your complications can change, and it’s important for somebody who knows you to understand that. We have to consider your quality of life, acknowledge your problems, [provide] access to a second opinion. This is so important.

If your physician has an ego and [asks], “Why don’t you believe what I am telling you?” It may not be that you don’t believe him, you just want to hear it from somebody else. So you should always have access to a second opinion, and you should always have your dignity maintained. It’s hard when you’re having colonoscopies, and you have to show private parts all the time, but there are physicians who are better at trying to help you maintain your dignity than others.

Unfortunately, most of you will get hospitalized during you lifetime, and you want to make sure that that hospital knows what they're doing in terms of your Crohn’s or your colitis. You want knowledgeable physicians and nursing staff. There has to be willingness again on the part of your physicians to send you to a specialty center. [There should also be] communication with the patient and the family and encouragement for self-management. We have to give you the tools to be able to take care of yourself because we’re not around 24-7. There is always a choice. We should always be able to say, “Listen, here are you choices, and here’s what I think is best for you. But, here are the pros and cons of all those choices.” Access to other people, not just physicians but social workers to help you with your disability forms, [is important as well], dieticians to help decide what is appropriate for you to eat.