This is Episode Three of “Autoimmune Disease: Pieces of the Picture.” This episode features Dr. Millie Long with an in-depth look at inflammatory bowel disease (IBD) – what it is, how it’s different from IBS, and the long journey patients often have on the road to diagnosis. She also discusses what can help patients feel better. Dr. Long is an Associate Professor of Medicine in the Division of Gastroenterology at UNC.
“People that have inflammation in their bowel could also have symptoms of inflammation elsewhere in their body. Common areas of involvement include the skin, joints, eyes or ulcers in their mouths.”
– Millie Long, MD, MPH
Dr. Ron Falk: Hello, and welcome to the Chair’s Corner from the Department of Medicine at the University of North Carolina. This is our new series where we explore topics related to autoimmune disease, to help patients and their loved ones understand and manage their condition. Today we are going to be talking about inflammatory bowel disease, also known as IBD. IBD describes at least two conditions – Crohn’s disease and ulcerative colitis.
We welcome Dr. Millie Long who is an Associate Professor of Medicine in the Division of Gastroenterology at UNC, and she sees patients in our Inflammatory Bowel Diseases Center. Dr. Long also serves on the Crohn’s and Colitis Foundation as Chair of the Professional Education Committee. Welcome, Millie Long.
Dr. Millie Long: Thank you.
Inflammatory bowel disease and how it’s different from IBS
Falk: What is inflammatory bowel disease?
Long: Inflammatory bowel disease refers to ongoing inflammation in the lining of the bowel. There are two main forms of inflammatory bowel disease: there is Crohn’s disease and ulcerative colitis. The difference between the two has to do with the location of where we find the inflammation, and the depth of the inflammation and the type of complications that can arise. Crohn’s disease can affect anywhere, from the mouth to the anus, whereas ulcerative colitis is limited to the colon. However, both of these forms of inflammatory bowel disease are associated with significant ongoing symptoms that can be similar. Symptoms can include diarrhea, abdominal pain, fever, nausea, rectal bleeding—all of these GI symptoms can be a marker that there may be ongoing inflammation.
Falk: There’s another three-letter acronym that differs from IBD or inflammatory bowel disease, and it has the acronym IBS. What does that stand for, and what are the differences?
Long: Irritable bowel syndrome or IBS, is actually a completely different disorder. Irritable bowel syndrome is where the bowel is very sensitive; thus driving ongoing symptoms. These symptoms can actually be fairly similar to that of inflammatory bowel disease; the difference is that inflammatory bowel disease can cause damage to the lining of the bowel which consists of actual structural damage, whereas irritable bowel syndrome refers to a collection of symptoms without inflammation or damage to the bowel. They’re managed very differently, in that, for inflammatory bowel disease you really need to focus on medicines that treat inflammation, whereas for irritable bowel syndrome, we work on ways to help to improve symptoms perhaps through dietary management, or medications to help with constipation, diarrhea, or other symptoms.
It’s very important if someone does have symptoms to see a physician, and that physician can help them to determine whether these symptoms may be coming from inflammation which is treated quite differently. p>
Red flag symptoms
Falk: Is there any other way of figuring this out by oneself? If you’re a patient sitting there listening to this podcast, can you figure out for yourself if you have irritable bowel syndrome or perhaps an inflammatory disorder?
Long: There are some red flag symptoms for which you should see a doctor to rule out inflammation. If you have bleeding in your stool, that can be a sign of ulcerations in the lining of the bowel, and that is something that may be a marker for inflammation. If you have weight loss, that’s a sign that you may not be absorbing well from what you’re eating and that could be a marker of inflammation. So particularly with those two symptoms, I would really encourage you to seek a medical provider.
That said, these conditions do overlap. I think talking to your physician—even starting with your primary care physician is absolutely appropriate. They can help you to determine whether your symptoms need further evaluation.
Falk: And by blood, you don’t mean just red blood – you mean different colors, right?
Long: Exactly. So blood, as it goes through the GI tract, can actually change colors. We gastroenterologists will often ask the shade of that blood in your stool, because if you were bleeding from an ulcer in your stomach, your bowel movement might actually look black, which occurs as the blood is digested throughout the GI tract. If the blood was arising from somewhere very low in the GI tract, like the rectum, that might be bright red blood. For example, hemorrhoids cause bright red bleeding.. The color helps us to determine where the blood might be coming from. But I would say, regardless, if you have bleeding, it’s worth talking to your doctor.
How long it takes to get diagnosed
Falk: So many autoimmune diseases take a long time to get diagnosed. Many times patients jump from physician to physician, problem to problem, without necessarily coming up with a specific diagnosis. I think that pertains to the inflammatory bowel diseases as well. How long does it take for a patient usually to figure out that there is an inflammation that is the cause of symptoms? What’s the usual experience that patients have?
Long: Well, I think you hit the nail right on the head, in that, often, unfortunately, many of my patients take a long time to come to that diagnosis. One of the reasons is that there are much more common causes of having GI symptoms. When someone first starts to have diarrhea, they may think it’s something they ate, they may think they’ve caught a bug. As symptoms progress, patients realize, “Maybe I should get this checked out.” Sometimes that initial evaluation may be unrevealing, they may be reassured, and they can be on a long journey until diagnosis.
My recommendation is if someone has ongoing GI symptoms, for over a month, including diarrhea, abdominal pain, these sort of symptoms, an evaluation is very important with their primary care doctor so that they can understand whether this may something more than just something they ate. Or it could be a sensitivity – it certainly could be that, something like lactose intolerance. These are things that the physician can help them sort through. I hate it when people have had symptoms for sometimes even years before coming to attention. At that point, they can have complications from their inflammation as well.
Falk: When the patient comes to see the doctor, in addition to describing the current symptoms, it’s really important to make sure there’s a record, even a written one, that describes all the problems and for how long they’ve had them.
Long: Absolutely, that’s very helpful to have a diary of symptoms and understand how long things have been going on – and other factors too, to think about things like weight loss. Believe it or not, to think about other associated symptoms. Autoimmune diseases are not always just one set of symptoms. For example, with inflammatory bowel disease, there’s something called “extraintestinal manifestations.” What this means is it’s outside the gut. People that have inflammation in their bowel could also have symptoms of inflammation in their joints or in their eyes or in their mouths with oral ulcers–even in their skin. Inflammation can be present really throughout the body. I think that being aware of all of their symptoms can be helpful and that communication and discussion with your doctor. Don’t leave off something just because it’s outside the digestive symptom.
Falk: It’s always useful for patients to come in with a written record of “Here are all of the things that are bothering me” – it clues the physicians and other providers in that there’s something systemic going on.
Treatment of inflammatory bowel disease
Falk: There’s been an incredible explosion of therapy for inflammatory bowel disease, remarkable progress in all kinds of therapy, including what are now called biologic therapies. What kinds of therapies are available at this time?
Long: What is wonderful is that we do have now a whole menu of options. Even twenty, thirty years ago, we really didn’t have effective therapies for the treatment of inflammatory bowel diseases. Often patients were treated with recurrent courses of steroids. Steroids are medications that have been around a long time, such as prednisone, and they do treat inflammation acutely, but the problem is that medications like prednisone, when used long term can have serious complications for the patients. So they’re really only meant to be a short term reduction of inflammation and now we have other medicines that can take over for that prednisone with better side effect profiles, with better data on using over the long term. One of the things about inflammatory bowel diseases, like many other autoimmune diseases is these are chronic diseases, meaning that we don’t yet have a cure for inflammatory bowel disease.
We have great medications that can help to put a patient in remission. What I mean by remission is get them symptom-free and get the inflammation healed up in their bowel. But it’s important to recognize that they will need to continue to take medications to treat that to prevent the inflammation from coming back. The biologic medications that you mentioned are one class of drugs that we now have many different options of for treatment of inflammatory bowel diseases.
There are now three main classes of these medications, all of which treat the inflammation in a different fashion. I often will tell patients we have to think of different ways to treat; some of these medicines turn off the inflammation at a systemic level, meaning they turn off inflammation all over the body. That’s why some of the medicines we use are often used in other conditions you’ll be highlighting on this podcast. We also have a newer class of biologic medications that are gut-specific, meaning that it actually targets only the gut itself. So there are a broad array of options and I often will individually tailor the medicine choice based on the patient in front of me.
Falk: So the first class was drugs that target an inflammatory mediator called tumor necrosis factor or TNF. There are several options now. And the gut specific one—give me some examples of those.
Long: Sure. There’s a new class of medications for the treatment of both Crohn’s and ulcerative colitis called anti-integrin therapy. One of these is vedolizumab. This is a gut-specific medication that blocks how inflammatory cells stick to the lining of the gut, and by blocking this gut-specific integrin, called alpha 4 beta 7, we’re able to selectively block inflammation in the gut without having the medicine treat inflammation elsewhere. That can be very advantageous in scenarios where we don’t want to have someone have more systemic immunosuppression drop their inflammation and suppress their immune system.
We also have another class of medications now, not only just the TNF alpha-inhibitors, we have a class of medicines that block interleukin 12 and 23, which is another mechanism of systemic inflammation. This medicine, ustekinumab, or Stelara, is also approved in psoriatic arthritis, an inflammatory joint and skin condition, but it’s now been approved in Crohn’s disease. So what’s very nice is that we now have several options. Not everyone responds to the first medication we try, and it’s very important that we find the right medication for the right patient, and I think emphasizing to patients that there are all these options, so if we fail one class of medications, there still options for treatment that can be quite effective.
Falk: Most of these are infusions that patients get at varying intervals, and the vast majority of them have untoward side effects. By definition they’re suppressing the normal response to inflammation. The question then comes, can one ever stop? When do you stop them for a patient with Crohn’s disease? Or if you start one of these does it mean you’re going to take it for life?
Long: That’s a very common question. The answer is, for right now, we know that these medications are something called a monoclonal antibody. Once we start it, if we are to stop it, we may not be able to come back to the same class of medication. The patient may actually develop something called antibody, where the medication will no longer be effective. So I often will talk to my patients and say, “We want to find the right combination that puts your disease in remission, under control, and you feeling well.” Once we do that, we address every six months – How are you? How are you tolerating this medication? How is your inflammation? We judge the risks and the benefits of that therapy. Often, it’s the benefit to keep going and to stay on that therapy in order to keep that inflammation under control and keep that patient doing well. Obviously it’s a matter of readjusting, reassessment, and more therapies become available, it may be that there’s an alternate therapy that may be better for that patient. I do think, right now, with Crohn’s disease and ulcerative colitis, it’s important to recognize that likely a medication will be required to keep that inflammation under control and keep that patient doing well.
Falk: It’s also important for the patient to figure out what symptoms they’re having while on the medication, to keep a record of that too, because that may prompt a trial of another drug.
Long: Absolutely. We ask our patients not only to document their symptoms, but we will also monitor other factors, things like levels of C-reactive protein, which is an inflammatory marker in their blood. Or sometimes we assess stool markers of inflammation. Ways for us to understand is this therapy still working, not only are they feeling well, but have there been any changes in these biomarkers along the way? Sometimes we actually need to repeat a colonoscopy or an endoscopy or a GI procedure to assess how the inflammation is doing on therapy to help us make those decisions.
The role of diet
Falk: Are there supportive care, or other things, that patients can do themselves, to help? What about diet? Is diet important, are dietary supplements useful?
Long: Diet can be very important. One example is, in the pediatric inflammatory bowel disease literature for Crohn’s disease – in young kids, if they’re started on something called elemental diet, meaning the diet is the purest form of supplements, that can be equivalent to steroids in terms of inducing remissions. It’s the equivalent to prednisone, without having to take it.
Falk: But you have to be a young person, right?
Long: It’s been shown to be for young children, that has been shown to be effective. We do think diet plays a role. The problem is that we haven’t been able to isolate one diet for all people with Crohn’s disease, or one diet for all people with ulcerative colitis. What we do in our practice is, often we’ll have our patients work with a nutritionist. Just as you mentioned about keeping a diary of symptoms, keeping a diary is very important as they’re eating and trying new foods, to help to have an individualized list of foods that may help or worsen their symptoms. So we work on an individualized approach. Now I am excited in that there will be a new study that we will be taking part of at UNC that’s sponsored by Crohn’s disease and Colitis Foundation, where for the first time there will be something called a randomized controlled trial with dietary intervention, where we’re going to be looking specifically at one diet called the “Specific Carbohydrate” diet. Some patients feel that this might make their symptoms better. We don’t necessarily have the evidence yet to understand what it does to inflammation of the gut. This study will be one way we’re trying to assess that. I do think as we’re getting more medications for IBD, I think understanding the role the diet can play is the next frontier of how we’re going to manage the disease.
Mental health concerns
Falk: Many patients with autoimmune disease and many patients with inflammatory bowel disease have real trouble adjusting to the disease, adjusting to the medication, adjusting to the idea, as anyone of us would – “Oh my goodness, I’m starting on a medication, and I’m going to be on this medication for a long, long time. In fact for life.” How does the patient’s mental health play into this whole care pathway.
Long: It’s huge. It can be so difficult to adjust to these diagnoses and to deal with symptoms. Depression and anxiety can be common; in fact, it’s shown in numerous studies to actually exacerbate the disease. We as gastroenterologists will often try to help patients from a mental health standpoint as well, because we recognize not only the impact on the patient on the day to day life from having the underlying depression, anxiety, and this can also complicate the course of disease. So there are medications we can use to help with that. Equally as important if not more important is working with a psychologist. In fact, here at UNC at our Inflammatory Bowel Disease Center, we have a psychologist who sees patients in our GI clinic, because we recognize the importance of mental health. They often will work on relaxation techniques, or something called cognitive behavioral therapy, ways to minimize pain and sensitivity. It’s really become a mission at the national level as well. Other IBD centers have moved to this model. I would encourage any patient with underlying Crohn’s disease or ulcerative colitis to reach out to their physician— often the gastroenterologist is the physician they see the most – and talk about these mental health aspects, because there are things we can do to help.
Falk: Many of these are mental health issues that are expected.
Falk: They’re not unusual – patients have trouble adjusting to all sorts of things that they’re forced to deal with. You mentioned that you’re using all of these wonderful drugs, but that you can’t look at a patient and say they’re cured. You tell them they’re in remission on therapy, and there are other therapeutic vines in the jungle. But you can’t look at them and say they’re cured. In order to be able to do that, you need to do, as a community, a lot of research to get that next step. How do patients get involved in research activity? Because that’s how your community has learned so much about this group of diseases.
Patient involvement in research, and patient resources
Long: I can’t stress this enough that this is a wonderful community of patients, that when given the opportunity, many not only want to participate in research to try to hopefully help themselves in terms of ways to treat Crohn’s or ulcerative colitis, but that the knowledge gained could help other patients as well. One example is a study that we have here at UNC that’s actually an international study. It’s a study called CCFA Partners, or Crohn’s and Colitis Foundation study, where anyone, across the country with inflammatory bowel disease, can join. They fill out surveys every six months. It includes information about their disease, it includes information about prior surgeries, current medications, but it also includes information about some of these other aspects that we’re mentioning. Something called patient reported outcomes – things like their mood, things like if they’re able to get out of the house and do the things they want to do. Aspects about fatigue, pain, all of these factors play a huge role in the course of inflammatory bowel disease, and we need to better understand how the patient is living as a whole. That’s the focus of this study.
What I also love about this study is that patients are really citizen scientists. They log on to our community and propose research questions. We take those research questions and we’ll go from there, often including the patient, and try to answer these important questions. One of the studies that I mentioned earlier, a diet study, is being done through the Crohn’s and Colitis Foundation, is actually an idea proposed by a patient through this platform. That patient is working with us to help us understand this important question that we’ve now been able to receive funding for, and are moving forward nationally. So I would encourage patients to visit the web site, “CCFA Partners.org” At this site, they’ll be given instructions on how to join from the comfort of their home, over any internet connection. I think it’s an important project moving forward in that it truly pairs patients, researchers, and clinicians together to try to answer some of these important questions about what it’s like to live with inflammatory bowel disease and how we as a community can work together to improve outcomes.
Falk: So the Crohn’s and Colitis Foundation is a good source also for patient information. Where else should patients turn?
Long: The CCFA is a wonderful resource. Often their own physician will have resources, for example, here at UNC, on our web site, if you go to the UNC IBD web site, we have links to educational resources as well. There are other national resources. There is an ostomy foundation resource for people that have an ostomy bag, that can be wonderful. There are links to all of these sites through both the CCFA and through UNC.
Falk: Thank you so much, Dr. Long. And thank you to our listeners. If you enjoy this series, you can subscribe to the Chair’s Corner on iTunes or like us on FaceBook so you’ll know when we post our next episode. Thanks so much for listening.
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