IBD Demystified: Understanding the Symptoms, Diagnosis and Treatment

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Bruce Kassover: Welcome to Life Without Leaks, a podcast by the National Association for Continence. NAFC is America’s leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians, and caregivers. All available at nafc.org. 

Welcome back to another episode of Life Without Leaks. I’m your host, Bruce Kassover, and joining us today is Sarah Jenkins, the executive director for the National Association for Welcome, Sarah. 

Sarah Jenkins: Thanks Bruce. 

Bruce Kassover: Yeah. Today we have joining us Dr. Maria Roell. She is a friend of the podcast and a third-year internal medicine resident at the Medical University of South Carolina.

She is looking to pursue her fellowship in gastroenterology and hepatology with a particular interest in inflammatory bowel disease. And that’s really what we want to talk about today is IBD in particular. So welcome, Dr. Roell, thank you for joining us today. 

Dr. Roell: Hi Bruce. Thank you so much for having me. 

Bruce Kassover: Last time you were here we spoke a little bit about IBD and IBS and the difference between the two, but maybe we can sort of revisit that. Could you tell us a little bit more about specifically what IBD is and what distinguishes it from other sorts of bowel health conditions? 

Dr. Roell: Absolutely I would love to. So IBD is a chronic condition where the immune system essentially attacks the digestive tract and causes ongoing inflammation and damage. There are two main types of IBD and those are Crohn’s disease and ulcerative colitis. IBD is different from other bowel diseases in that it causes actual visible inflammation that you can see in the colon on colonoscopy and that you can see when you look under the microscope looking at samples of tissue from the colon.

IBD is a systemic inflammatory disease and it can impact more than just the gut. 

Bruce Kassover: There has been so much talk lately about inflammation and I’m wondering, so so we’re talking about it just past the gut. There is an inflammatory condition that really is, it affects your entire body or at least broader areas. Maybe there are there some other signs to be looking for that might suggest IBD? 

Dr. Roell: Yes, so things that we would look for or the common symptoms that might make someone worried about IBD would include bloody diarrhea, abdominal pain, cramping, severe fatigue that’s not explained by anything else.

Weight loss and bowel urgency or incontinence would be some of the symptoms that combined together may make me worried that someone is dealing with IBD. 

Bruce Kassover: Okay. Is there, and now what about, is there anything like skin or joint or eyes that you might be thinking about also? 

Dr. Roell: Definitely there are extraintestinal manifestations of inflammatory bowel disease. So things like arthritis or joint pain may be something that patients present with. They also can develop skin changes. They can get specific rashes or nodules that we call “erythema nodosum.” It’s a pretty specific rash that is highly indicative of IBD. Otherwise patients can get inflammation in their eyes called uveitis where they have redness and sensitivity to light in their eyes.

Bruce Kassover: The body is an amazing thing, isn’t it? 

Dr. Roell: It really is. 

Bruce Kassover: I mean, can you imagine you have redness in your eyes and your doctor says, “Yeah, you might have inflammatory bowel disease.” That just strikes me as remarkable and a little bit scary.

Dr. Roell: Yeah definitely. And patients might present with those symptoms before they develop the GI symptoms, too. So it’s definitely important to even ask if they’ve ever experienced these symptoms when they are coming in with GI symptoms. 

Bruce Kassover: Speaking of scary and GI symptoms, we are talking about things, you know, when people are afraid to talk about their health in general, talking about digestive health and bowels and poop is, you know, a lot of people, it’s just, it’s gross and “I don’t want to deal with it.” And it’s embarrassing. And it feels like infantalizing.

How hard is it to get patient… when a patient reaches you? Have they already sort of reached that point where it’s just so bad that they have to talk about it? Or do you get patients who are like a little more like, you know what, I don’t care. I’m just gonna go talk about this issue and deal with it. How do patients present themselves and what can you do to help them feel a little more comfortable about the whole process ?

Dr. Roell: So I, like you mentioned in the intro, I am in my third year of residency. So I do both a primary care clinic where I see people coming in with their initial complaints. And then I’ve also been fortunate to work in our IBD clinic. So I kind of see patients on both aspects of things. And the primary care clinic people will come in and they will be like, I’m having stomach issues, I’m having abdominal pain, I’m having abnormal bowel movements.

But they tend to not want to be very specific about it. It tends to take some prodding questions and kind of. Making them feel comfortable to talk about what their bowel movements look like, what symptoms they’re having, and kind of taking it from there to get a further history of it. I think when it comes to the inflammatory bowel disease clinic, patients kind of expect to come in and have to tell us about their poop.

So I think they are a little more open and ready, but some of our younger patients, like our teenagers, still seem to be a little embarrassed about it and a little hesitant. So I think just asking directly about the symptoms they’re having and not giving any inclination of you as the provider feel embarrassed about asking makes the patient feel more comfortable in talking about what’s going on.

Bruce Kassover: You know, you mentioned teenagers and when we talk about incontinence in many cases, people often think that it’s something that happens mostly to older people. But this is not something that’s limited to people as they get on in years. Is it? 

Dr. Roell: No, definitely not. I mean, we have patients who have developed inflammatory bowel disease as children. They come in as teenagers, and then we also have patients who are older. It actually, IBD tends to be more commonly diagnosed in younger adults and then middle aged adults. So there’s kind of like a two, like two area, two age curve where diagnosis tends to be more common. 

Bruce Kassover: That’s really interesting. Maybe that then we could talk a little bit about the causes of IBD. What is, you know, is this genetic, is it environmental? Is it a combination? And maybe if we have any idea why it tends to peak among certain age groups or if there are maybe gender or, or ethnicity differences in prevalence also, maybe can you tell us a little bit about that?

Dr. Roell: Yeah, so there’s not really one single cause of inflammatory bowel disease. It tends to come from a variety of different factors. Genetics does play a big role. IBD tends to run in families and patients are more likely to be affected if they have a parent or a sibling. With IBD immune system dysregulation tends to kind of be the trigger for the development of inflammatory bowel disease.

But there’s not a clear cause as to how this. Dysregulation of the immune system initially happens. Other risk factors tend to include where people live. So IBD is more common in developed countries in urban settings. And then there are also certain lifestyle factors that can increase the risk for a diagnosis of IBD specifically smoking. Smoking is directly associated with Crohn’s disease.

And then I think the other question that you asked was, does it tend to be more common in a certain age range or population? We tend to see it more commonly in Caucasian females, and like I said, they tend to have that age distribution of younger adults. So we’re thinking maybe late teens to mid twenties. And then it can appear again in like forties to fifties, sixties range. 

Bruce Kassover: That’s really interesting. So the, what you mentioned about urban environments in developed countries. Is there any guess as to why that might be? Is it diet? Is it taking the subway too much? What is it? 

Dr. Roell: I think that’s a great question and I don’t think we have a clear answer as to why it’s more common in urban areas. But I think in general, people have less exposure to like natural microbes. There can be changes in gut bacteria due to antibiotics or increased consumption of processed foods.

There’s also a hygiene hypothesis where people in developed countries are exposed to less, essentially, germs in the environment and their immune system doesn’t react or regulate as appropriately as. It should in less developed countries but also like a westernized lifestyle and diet where we tend to be more sedentary and eat increased processed foods and less fiber in the diet tends to be a risk factor for IBD.

Bruce Kassover: So, if I’m somebody who, maybe I don’t have the symptoms yet of IBD or some other bowel condition, but I want to try and live a life that minimizes the chance for these things to occur to me, is there a particular diet that I should follow? What about things like probiotics or prebiotics? Anything that you would recommend to help me have a better chance of avoiding this? 

Dr. Roell: Definitely. So incorporating a healthy diet and active lifestyle is important for all aspects of having a, of being well-rounded in your health. So. It’s great for trying to prevent IBD, but also is beneficial in reducing rates of heart disease or decreasing rates of diabetes as well.

I typically tend to err on the side of recommend recommending a Mediterranean or well-rounded diet. I like to counsel my patients on trying to incorporate more whole grains, lots of fruits and veggies and lean protein, so like chicken or fish. Also limiting processed foods and then also limiting alcohol intake and sugary drinks.

Some people have, may have heard that shopping around the edges of the grocery store is recommended. And I think that is actually a good way to avoid a lot of the processed shelf foods that are in the center and can make it easier to incorporate a well-rounded diet. 

Bruce Kassover: Speaking of which, what about those probiotic yogurts? Should I be stocking up on those? 

Dr. Roell: I think that’s something that doesn’t necessarily hurt. I think incorporating probiotics can definitely be helpful. Just making sure that you’re looking at the labels you want something that tends to have a higher number of one specific strain and not kind of a bunch of other additives like sugars or other supplements that may not be as good for you.

So with probiotics, I would say to do your research and look for things that have a higher strain of both probiotic and prebiotic counts. And does not have like, extra additives in there.

Sarah Jenkins: Yeah, I, I just have a question. ’cause you mentioned preventing IBD. Is it something that you can really prevent or is it more of managing symptoms if you’re prone to having it? 

Dr. Roell: Not really. I wouldn’t say it’s something that you can truly prevent. Like we talked about before, it’s kind of genetic factors in immune system dysregulation are more so what may directly cause it.

Like I said, there’s not one clear cause. But no, it can’t really be prevented. It’s kind of just managing symptoms and incorporating healthy lifestyle, dietary changes, and then medications as well. 

Sarah Jenkins: Gotcha. So if somebody does start, I mean, obviously all of those things are great to incorporate regardless of if you have a bowel health condition or not.

But if someone starts presenting with some of the symptoms that we were talking about, they should still definitely come see you, or you know, a GI doctor to, to get it checked out. 

Dr. Roell: Yes, definitely. 

Sarah Jenkins: Got it. Thanks. 

Bruce Kassover: So let’s talk about going to the GI doctor. So you show up to your doctor because you’ve been having symptoms. Can you walk us through what the diagnostic journey is like, you know, the typical process of diagnosing IBD? 

Dr. Roell: Yeah. So in your first doctor’s office, whether it’s, I, so in your first GI appointment, you’re going to be asked a lot of questions. So some things that I would want to know are, when did your symptoms start? What are your symptoms and how have they changed over time? How often are you experiencing these symptoms?

Big things we ask about are, is there any blood or mucus in your stool? Is it in your stool every time or is it just there occasionally? Do you notice blood in your actual stool or is it more so just when you wipe.

Have you noticed any weight loss, any fatigue or fevers? And then asking about those extraintestinal issues that we touched on before. So any joint pain, any eye redness or sensitivity, and then any new skin changes that patients may have noticed.

I also want to get a good family history of digestive diseases or autoimmune diseases, and then seeing if patients are on any medications or specific diets.

For women of childbearing age, we also always ask about any plans for pregnancy if they’re trying to, if they’re currently pregnant, trying to get pregnant or have plans for pregnancy in the next couple of years, we like to ask about that because that can help determine some of our treatment options.

Bruce Kassover: That’s very interesting. Okay, so you go through this diagnostic process. Are there tests that are also done alongside this as well? The questioning part of it. 

Dr. Roell: Yes, definitely. So there’s a lot of tests that we would send to initially work up inflammatory bowel disease. So these would be lab tests, so just blood work.

Things that we would be looking at are complete blood counts, electrolytes, kidney and liver function. We also check for inflammation, looking at markers with CRP and ESR. We also look for signs of anemia or iron deficiency as well as vitamin deficiencies. B12 folate. Vitamin D are some of the deficiencies that we look for and are pretty common in patients with IBD.

We also will send stool studies. One of the main things that we’re looking at with that is checking for a lab called fecal calprotectin, which gives us an idea of how much inflammation is in the stool.

Bruce Kassover: So you, you do a whole bunch of things. Once you’ve done these tests, is that enough for a diagnosis usually, or is there more to it beyond that even? 

Dr. Roell: So those are the initial tests that will give us some idea of if there’s. Inflammation going on in the GI tract and kind of ,if we’re on the right track with a diagnosis of IBD, so let’s say for example, your inflammatory markers, your ESR and CRP come back high, your fecal calprotectin and your stool sample comes back high.

Then we would be worried that we are dealing with inflammatory bowel disease and we would move on to testing with endoscopy such as a colonoscopy. Or if we’re worried that there may be some impact outside of just the large intestine, we may order a CT scan, an MRI or an ultrasound. 

Bruce Kassover: Okay, so you do this testing and yes, it turns out that I have IBD, what can you do for me?

Dr. Roell: So there’s a lot of things that fortunately we can do for IBD. Over the past few years the research in the field of IBD has continued to grow and become very vast and there are a lot of medication options. So some things that we may start with would be steroids or mesalamine to help reduce some of the inflammation in the GI tract.

But ultimately a lot of patients end up on medications called biologics, which essentially work at specific parts of, in which work in specific parts of the immune system to decrease that inflammatory response that is causing the symptoms of IBD. 

Bruce Kassover: You know, I see a lot of commercials for medications for that are meant to address IBD. Do they really work? 

Dr. Roell: Definitely. So these have become our kind of our best options for patients with IBD. I mentioned steroids, but that’s not typically a long-term solution. ‘Cause steroids can have side effects, but biologics, there are a lot of options. There’s a wide range. And patients tend to tolerate them pretty well once you find one that works for them.

But they definitely work. They reduce inflammation and they can reduce their symptoms and it can lead to a lot better quality of life for patients. 

Bruce Kassover: Well that’s encouraging. And they often have very catchy theme songs too. 

Dr. Roell: They do. 

Bruce Kassover: But I’m wondering about barriers to helping patients get these medications, even get to your office in the first place. I mean, we know the patients often for a variety of reasons, wait forever until they actually come to a doctor. But do you have any, any sense of what some of those barriers might be? Whether it’s just like the embarrassment we were talking about, or affordability or just doctors in their area and what they might be able to do about it to help them get, you know, the treatment that they deserve more quickly and effectively .

Dr. Roell: Definitely, I think there are a lot of barriers. In general, IBD symptoms can at time mimic other symptoms, so achieving a diagnosis initially may be challenging. IBD can be sneaky at times. Sometimes it might be patchy, their symptoms might like, it might be patchy colonoscopy. Patient’s symptoms may come and go.

Or they might have some of some minor symptoms like abdominal pain fatigue, but may not be having consistent bloody diarrhea or bowel urgency. And patients themselves may overlook their symptoms as minor, which can lead to a delayed diagnosis in general. Other barriers include insurance or high costs.

So the costs of colonoscopy or CT or MRI can definitely be barriers for patients. And then also getting access to specialists, whether this is a GI specialist or an IBD specialist. In certain areas the number of these physicians are limited and they can have long wait times. So that can lead to a delay in getting started on medication.

Bruce Kassover: Now, I’m wondering about the cost in particular if you live in an area where there aren’t many physicians, I guess that there’s not much you can do about it other than, you know, trying to make it a point to, you know, visit a place where there are more doctors who could help you. But affordability, do you encounter that a lot in, when you practice and do many of these medications have options for patients who might have limited incomes to help make them more affordable? 

Dr. Roell: Yeah, definitely. Affordability is a great question and definitely an issue that we encounter with all of these medications.

So biologics can be very expensive. I think there’s an active movement in the IBD community to try to be able to reduce the price of these. A lot goes into making the medication and getting it approved through the FDA and that sort of thing. So it takes a long time and jacks up the prices. One thing specifically that I know companies are starting to do is introduce biosimilars, which to explain simply is kind of like a generic of the biologic. Not exactly, but, and for comparison’s sake, we could call it that.

And those go through essentially. Not as rigorous of an approval because they’re based off of the original biologic medication. So the function is the same, like the content is the same, the function is the same. They just get approved by insurances and by the drug companies a little bit quicker.

So that’s something that is in the works to try to reduce the price of biologics and to make it more accessible for patients. Additionally, there are lots of programs through the specific drug companies that make the medications that have cost assistance programs. And a lot of institutions will have pharmacists that specifically work to get patients enrolled in these cost assistance programs to make the medication affordable.

Bruce Kassover: I certainly like hearing that there’s a movement to try and make these more affordable and definitely, yeah, we encourage people to do what they can to try and explore affordability options. So that’s great to hear. But when it comes to treatment, I think that there are some things that also probably don’t cost you anything, especially when it comes to dealing with things with the emotional aspects associated with it. Can you talk a little bit about what those might be? 

Dr. Roell: Absolutely. So, the emotional aspect of IBD and how it influences patients’ lives is a huge, huge impact and something that is really important to keep in mind when treating patients with IBD. In our clinic we actually have a behavioral health specialist and a social worker who  comes in and talks to patients during, usually their inpatient appointments or even sometimes virtually. She’ll come in and do a little bit of meditation. She’ll talk to them about stressors in their lives and try to provide them with tactics on how to reduce stress or incorporate meditation or exercise or dietary changes that can help them manage some of their symptoms.

Bruce Kassover: Excellent. Well, anything that you could do to help, like you said, reduce the stress and become more mindful could be a great help. So I appreciate you recommending those. Now I’m also wondering, it sounds like there’s a lot that’s going on in the field with these new medications and with more attention on, you know, the emotional side of things.

Where do you think all this is going? If we were to have this conversation, say 10 or 15 years from now would we be talking about the same things or would patients have a much better prognosis? 

Dr. Roell: Bruce, I think that’s a great question. I think there is so much research in the field of IBD and there will continue to be new drug developments, new diagnostic developments, and I anticipate there being a lot of changes over the next couple of years, hopefully, to improve patient’s access to medications and maybe to ease the diagnosis of IBD a little bit.

One thing that I know is making its way to the state’s intestinal ultrasound. So this is a way to take a look at inflammation in the GI tract just with point of care ultrasound. It can be done easily in the office. Patients don’t have to prep for it. It’s non-invasive. And this can give us a good idea of if their treatment is working, if they have a lot of inflammation, and it can also help with timing, colonoscopies, or follow ups as well. 

Bruce Kassover: That’s very cool. And of course, we are not living in the future. We are living in the present. So if you are somebody who is either has a diagnosis or think that you might be getting a diagnosis, you know, this is Life Without Leaks. And one of the things we always like to do is leave our listeners with one little hint, tip advice, bit of strategy to live a life without these sorts of symptoms. So maybe you have one you can share with us today… 

Dr. Roell: I think my biggest tip of advice would be for patients to ask questions. I think IBD can be confusing to patients. They may not fully understand the extent of the disease or how to manage their symptoms. So ask your doctor questions, look at on trusted online resources and just be open to hearing new information and trial and error of what may work to help relieve some symptoms.

Bruce Kassover: Well, that’s outstanding advice and I appreciate it. So thank you for sharing it with us, and thank you for joining us today. I certainly hope that people who think that they might be developing symptoms or those who already have a diagnosis, get a lot out of this and really learn to live a life that is healthier, happier, and, you know, with less distress. So, thank you. 

Dr. Roell: Thank you so much, Bruce. It was great to be here. 

Bruce Kassover: Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin McLeod. More information about NAFC is available online at nafc.org.