Lesser-Known Symptoms of Inflammatory Bowel Disease: Expert Q&A

People often associate inflammatory bowel disease or IBD with an urgent need for a bowel movement, diarrhea, bloating, and abdominal pain. Many don't realize that not only does IBD consist of two distinct diseases, Crohn's disease and ulcerative colitis, it can also have many lesser known symptoms. Today on At the Forefront Live, you'll hear from two of our experts about some of the lesser known symptoms of IBD. They'll have advice for you and take your questions. That's coming up right now on At the Forefront Live.

And we want to remind our viewers that today's program is not designed to take the place of a visit with your physician. Let's start off with having each one of you introduce yourselves and tell us a little bit about what you do here at UChicago Medicine. And you're actually asked at the desk with me, I say this always, we're trying to socially distance so we have people kind of scattered around the studio. But you're at the desk, so we'll start with you.

Hi, thank you so much for having us. My name is Anna or Annie Gomberg and I'm the administrative director of the IBD Center, the Inflammatory Bowel Disease Center here at the University of Chicago. And in my job, I wear a lot of different hats, but I am responsible for doing events and communications are related to patient care at the IBD Center. And I run our monthly patient support group for adult patients with IBD as well as our IBD SuperFriends patient mentoring program where we match patients who have Crohn's disease or ulcerative colitis at different stages along their journey with other people who might be able to help them with some information that are in the same place or have been in the same place.

And we really do have a world class center here.

Absolutely.

So we'll get more into detail on that as we go throughout the show. But you guys have a lot to be proud of over there. You do some wonderful work.

I'm very proud of it.

Yeah, it's fantastic. So Jennifer, you're over on the other side of the room. Tell us a little bit about yourself.

So my name is Jennifer Labas. I am actually the inpatient nurse practitioner for our IBD service. We have the luxury of having our own admitting IBD service here. So we take care of our own patients, we manage our own patients. I also follow our patients that if they do need surgery and they're under the colorectal surgery service, I see them on a daily basis as well so that we get a formulated medical plan for them prior to discharge home. And I've been with the department since 2011.

Great. So let's start off with just kind of the basics. What exactly is IBD? I don't know which one I was takes that one? I'm looking at both of you.

Jen, how about you?

I can take that one.

You're the expert.

So Inflammatory bowel disease quite different than irritable bowel disease. Sometimes that gets a little bit misconstrued. Inflammatory bowel disease actually has a tissue diagnosis of an inflammatory condition. A little bit different, ulcerative colitis is just confined to the colon, very superficial inflammation. Usually those patients are the ones that have usually more of the bloody stools, more of the urgency.

Crohn's disease it's quite different. It could be anywhere from the mouth all the way down to the anus. That can be actually transmural inflammation where the inflammation can actually burrow through the wall of the intestine causing abscesses, fistulas, a lot more complex issues. And we treat both patients both types of conditions.

There is kind of an intermediate area where it gets a little hairy. Some patients we can't definitively say if they have Crohn's or ulcerative colitis. Those patients we call indeterminate, but we manage kind of everybody. Irritable bowel is a little bit different. You can have similar symptoms, but endoscopy, things look completely normal.

So can you tell us-- you touched on this a little bit already, but the difference is between Crohn's and ulcerative colitis. I mean, there are some specific differences there.

Yes, definitely. So Crohn's disease, the most common spot for Crohn's disease is where the small intestine meets the colon. Those patients are usually the ones that are coming in with obstructive symptoms, nausea, vomiting, abdominal pain. They usually sometimes also have fevers. They can develop intra-abdominal abscesses, abscesses around the bottom as well. So they technically can pretty much have issues from the mouth all the way down. We've actually had patients that have had-- one patient in particular I could think of that actually had a fistula from his esophagus into his lung. So it can be a very complex disease.

Ulcerative colitis as well. They can develop toxic mega colon, which is a surgical emergency. They can be at risk for perforating their colon. We're very fortunate where we have a colorectal surgery team here. So we work very much hand-in-hand. We're always on the same page with them, which I think patients enjoy as well that all of their providers are under the same health care system.

So we do want to remind our viewers that we'll take your questions. So just type them in the comment section. We'll get to as many as possible over the half hour that we do the program. Tell us a little bit about the center, because I think that's something that we can brag about a little bit here at UChicago Medicine. It's pretty impressive.

It's really impressive and very unique. It's one of the oldest gastroenterology departments in the country. And it was established by Joseph Kirsner in the middle part of the 20th century. And we have a wonderful multidisciplinary team here, and Jen is a fantastic component of our multidisciplinary team with a dedicated inpatient service for people with Crohn's disease and ulcerative colitis. So if you have to be in the hospital, it is good to be in a place where people know IBD inside and out and are treating you in that setting.

Of course, our physicians are world class, led by David Rubin who's the chief of the section of gastroenterology, hepatology, and nutrition. He is a professor, the Joseph B. Kirsner professor of medicine and has been at the University of Chicago for his entire career and is just probably one of the world leaders in this field along with Dr. Cohen, Russell Cohen, who is the director of the Center for Inflammatory Bowel Disease. He's again, another world class physician and somebody that has really sterling reputation for patient care and is so knowledgeable.

And of course, part of that team includes our advanced practice nurses like Jen. We have many events practice providers who work directly with the physicians, but really help increase access to patient care as well as help our patients have sort of a coordinated care model that allows us to work with the physicians as well as making sure that they are getting their pharmacological med if they take medication if they need any kind of coordination outside of the physician's office appointments.

And then of course, we have, as Jen mentioned, the colorectal surgery department, which is held by Neil Hyman who is again, wonderful colorectal surgeon. And the colorectal surgery department really specializes in some of the more important-- or sort of more-- if you have complicated or very severe IBD, sometimes surgical treatment is necessary. Sometimes surgical treatment is the cure, is sort of the best course.

And our surgeons really have the capacity to perform those complicated operations and make sure that patients get back to their regular lives as quickly as possible. And of course, I mentioned our pharmacists, our radiologists, our pathologists are all the very best. And everybody has to work together in order to give the very best care to our patients.

When we do these programs, oftentimes we talk about the multidisciplinary teams, and people always kind of-- I get made fun of for that because it's like it's just one of those little catchphrases, the buzz words. But it's very true because it is a team approach. And there are a lot of folks that will be working to make sure you have the best care possible. And really, again, it's two heads are better than one. And five heads are better than one and even more. So it's pretty impressive to see the work you do. Talk about the super friends. You mentioned that a second ago and that was intriguing to me. What is that?

Well, so we-- and again, I think this is unique to the University of Chicago where I know that there are patient-mentoring programs. But I think ours is really big, really robust. So we have this wonderful system where if you are a new patient or you've been diagnosed and then you come to the University of Chicago to meet with our physicians.

And let's say you're starting a new medical therapy, you're planning to have surgery, you've been told that you need to have sometimes a surgery called a small bowel resection or a colectomy where some sort of major surgery. These are invasive surgeries where they have to go in and take out part of your intestinal tract. Every person that I've ever spoken with that has had IBD, that has had one of these transitions has said, I really wish at that time I could have talked to somebody on the other side who had gone through that.

And so we have set up a program where we match patients with our patients who have all been trained and have expertise in communicating their story and also asking thoughtful questions, making sure that they're being good listeners, making sure that they are being supportive. We match those new patients with some of our more experienced patients that have expertise because truly, physicians and nursing teams and all of the members of our multidisciplinary team are wonderful.

But for a patient-to-patient perspective, there is some information that really only patients know. And so it's great. And really, it's very low tech. People contact me and I have a database and I match people on different kinds of lifestyle, alignment if they're pregnant and they're thinking about what's that going to be like. Or if they're, like I said, approaching a big transition.

I mean, that makes perfect sense because--

It's great.

--you can talk to a peer and really know what they went through and what you're going through. There's got to be a connection that's definitely I'm sure very, very powerful. We are getting some questions from viewers, so we want to get to those. And Jennifer, I'm going to throw this one to you. And this is from Patricia. Thank you, Patricia. Can intestinal metaplasia be a form of IBS?

IBS is a little bit different. So IBS is more-- it's called irritable bowel syndrome. So typically, you do not see anything on pathology with irritable bowel. Inflammatory bowel disease, usually you want your pathology read by a AGI pathologists. Sometimes we have patients that come to clinic and we actually have them bring in their glass slides from their colonoscopies, EGDs so that our GI pathologists can take a look at those because sometimes we've actually had patients misdiagnosed.

They may have been told they had something similar to irritable bowel or they were never scoped appropriately. Some patients we have get scoped in, they don't even go all the way to the small intestine, which can be confusing as well because Crohn's and colitis, usually with ulcerative colitis, the ilium should be normal, which is part of the small intestine. So we definitely want a complete scope.

Sometimes we end up redoing those endoscopies just because we may not have all the information, we may not have enough biopsy slides. But typically, ulcerative colitis or Crohn's usually comes up as either mild, moderate, or severe inflammation not so much the metaplasia.

Interesting. This one's from Julie, and Annie I'm going to give this one to you because it goes hand in hand with what you were just talking about. Do you have a matching system available for children as well?

So it depends on the depends on the child because often we match parents because that's a really-- parents of course, core to the social support and the medical care of their children. We match teenagers definitely, and I would think that if there was-- and I don't think that has to be an age-- there's not always an age cut off for that because I would think that there would be a benefit to a younger teenager who is mature who was going through something to talk to someone else.

So please reach out to me. And if you're a patient at the University of Chicago, if they're patient at the University of Chicago we can see what we can do. Six-year-olds my son included or not always as good at email and texting so that's a little tricky to get that set up. But we certainly do, and I think parents talking to parents is really important. So I really encourage parents to reach out also.

That sounds very, very helpful. This one is from Leah. Can IBS go hand-in-hand with gastroparesis?

So, yes. IBS, so a little bit different again than inflammatory bowel disease. So irritable bowel disease, you can have symptoms that vary from nausea, vomiting. Gastroparesis is a little bit different where you have a motility issue so you have an issue with the squeeze. So sometimes they try medications like Reglan, something that's a little bit more that gives you that extra squeeze.

Usually, to diagnose gastroparesis, we have other studies, gastric emptying studies we have that just kind of check the squeeze of the stomach to see if you're fully emptying. And EGD can also be very helpful because if they do an actual scope down from the mouth into the stomach, if patients tend to have a lot of food in their stomach when they ate 24 hours ago and the stomach is still full of food, then definitely they would have food in the stomach and that would make us more or less think that it's more of like a gastroparesis issue.

Interesting. Another viewer question. What are some of the challenges an IBD patient goes through that they maybe should tell their family or friends about just if they want them to be aware?

Yeah. Well, I think that thanks to-- we see commercials all the time for medicine now and people I think know a little bit more about some of the primary symptoms of IBD. But in our support group our patients talk all the time about some of the lesser known things that I think families don't always take into account. Anyone living with a chronic illness is experiencing, I think, a lot of sometimes some heavy psychological concerns as well.

And I think that we know that depression rates for patients with Crohn's disease and ulcerative colitis can be higher. Anxiety related to some of those primary symptoms if they're not in remission is important for parents for parents and friends and family to know about. IBD patients, probably the biggest thing that we talk about in support group that isn't one of the symptoms that you hear about, nausea, vomiting, diarrhea is fatigue.

IBD patients often have sleep disturbances if they're, again, not in remission and also just the toll that having chronic inflammation can take on the body can make people very tired. So that's something that parents and families should know about. As well I think that we don't always talk as much about pain. But IBD patients experience abdominal pain. And that isn't as visible. It's very, again, not every IBD patient is getting up and running to the bathroom often. It can be a very kind of visceral and kind of quiet kind of symptom to have that kind of ongoing abdominal pain.

Yeah. So-- excuse me-- holiday season, any specific challenges there?

Well, stress also plays a part, and I'm sure Jen can second this that stress and I think probably dietary disturbances, eating differently and doing alterations in your routine I think can really impact people with IBD, Crohn's disease, or ulcerative colitis. And truly, seasonality I think also plays a part in it often. And this is very anecdotal, but our patients often say that fall and winter are hard times for them. And I'm not sure if that is due to-- we're not sure why that would be, but sometimes in just a general seasonality differences and changes can impact the way that people feel.

I totally agree with that as well too. Sometimes we have seasonal flares where usually at the end of someone's graduating, they're about to start their life graduating from college, they got married, they bought a house, all these main stressors, they're trying to have kids, they just had a baby. A lot of that has the stress on the body. And we still don't know necessarily what causes Crohn's or ulcerative colitis, but stress does definitely play a huge part in that.

And also too just with the stress of holidays coming in. Sometimes we have these patients that tend to flare around the start of Thanksgiving, Christmas, kind of getting into the holiday season as well too, there's a lot of stress. And especially with COVID as well too, there's so much stress going on in the world. So we definitely have had higher admission rates and things like that in the last couple of years as well too.

It is a stressful time.

It is. It is.

It's tough for everybody.

And sometimes it's hard to deal with that stress because a lot of places are closed, someone may have done yoga or other things. And sometimes they're on their own now trying to find different means of controlling that anxiety and helping to alleviate those symptoms with it.

I'm glad you brought up yoga because that was one of the questions I was going to ask you too about. That's one way that you would suggest that maybe somebody help to deal with some of the symptoms. Talk to us about that and maybe some of the other suggestions you might have.

Yeah, sure. Definitely working out, yoga, meditation. We have a lot of patients that do meditation. A lot of our patients when they're flaring unfortunately have to go on high dose steroids to try to help a lot of these flare symptoms. High dose steroids for I know that a lot of you that have been on those, it makes you jittery, you can't sleep, it affects everything with your mood. It sometimes causes you to eat more, so then you're gaining weight on top of already probably being depressed about being sick and flaring.

So definitely working out we recommend highly, anything that helps you relax. And meditation is huge. Patients have told us yoga, anything that really just helps you relax and kind of get your head out of all the stress that's going on in your mind.

So how common are symptoms outside of the digestive tract? Again, that's something you touched on a little bit earlier, but that's something I was not aware of.

Yeah, definitely. So a lot of our symptoms, like Annie said, patients can have a lot of fatigue. And a lot of that with Crohn's, you have a lot of absorption issues. So a lot of our vitamin absorption is in the ilium, the very end of the small intestine. So some of these patients present anemic. And I think a lot of the time, sometimes if they're women, especially, if they're at menstruating ages, sometimes they say, oh, it's related to female problems or something like that.

And I think they write that off and they don't necessarily relate that to GI symptoms because sometimes patients may not have diarrhea as a presenting symptom. Sometimes patients are constipated, sometimes they have other issues. They may blame it on dietary indiscretions and things like that. They might think they're lactose intolerant and it ended up being ulcerative colitis. So there's a lot of different moving parts, I think.

We've had one patient go for a regular optometry appointment and he ended up having uveitis. And his optometrist actually was very astute and said, are you having any GI symptoms? Because it's one of the extra intestinal what we call symptoms of Crohn's or ulcerative colitis where it's inflammation of the eye. Sometimes they end up coming in with erythema nodosum, which is another skin condition, which are these painful hard-raised red warm nodules usually on the shins of patients.

Peristomal pyoderma, if patients have had an ostomy,

, they can get these painful-- they start out as blisters, and then they open up to almost can be almost like a stage for ulcer like a wound ulcer. So things that you wouldn't necessarily think are GI related it definitely impacts things outside of the intestine.

Joint pains is a huge one for patients when they're flaring. Some get low grade fevers or fevers. And not everyone gets fevers but some say, when I start getting a low grade fever, I know I'm getting into a flare. It's almost like when patients have migraines and they have that aura. They know when they get joint pains, they're going to have GI symptoms that follow that.

Very interesting. Question from a viewer. Julie asks, when on a restrictive diet such as low residue, how do you suggest getting the proper vitamins and nutrients?

I can take that one. So we're very fortunate we have nutritionists in our department. So the idea behind kind of a heart-healthy diet with the high roughage fruits and vegetables and things like that, that is really meant to cleanse the colon. When patients have structuring Crohn's disease for instance or structuring colonic disease, you don't want to be eating a lot salads and high roughage foods that are going to get stuck in those areas and cause pain and possibly lead to surgery.

So normally with diet, we only really restrict patients to low fiber if they're flaring or if they have a known stricture like a scar tissue or inflammatory structure. Once they have had surgery, usually they're on a six-week low residue diet restriction. If they have a known stricture that if they're not ready for surgery or if health-wise they can't have surgery, say they're malnourished, usually we do kind of a standard low fiber diet just so they don't keep getting obstructed and ending up in the hospital.

Once patients are in remission, so form stools, no pain, no bleeding, normal amount of stools a day, two to three form stools, then we have them kind of liberalize their diet and go back to kind of a normal standard diet. Chewing is the biggest thing. All of us are very bad at that. We're usually in a rush to get on to the next thing, so you have to hurry, hurry eat and get on to the next thing. So patients don't chew well. None of us chew well.

So chewing is the biggest thing, especially if you have a known fibrotic stricture or inflammatory stricture, you don't want things getting stuck. So the dietary restriction is usually post-surgical or if you have a known stricture and you're either waiting on surgery or if you're not ready for surgery. That's more just restrictive until that stricture gets surgically fixed or if you're not ready for that, usually you're on kind of a longer term diet low-fiber.

We do have two terrific nutritionists that work with us that do deal with IBS, IBD, celiac disease, kind of everything. So they're terrific. So usually, we refer a lot of our patients to them as well just to make sure that they have a full dietary exam to make sure that they're getting all the nutrients that they need.

And part of that I think is usually regular testing of things like B12 levels. Vitamin D is something that is very common, especially in this time of year, very common for IBD patients to be deficient in but not always known. Zinc and even if you work with your GI to get those tests done on a regular basis so that you can kind of monitor the vitamin levels and your general overall nutrition.

But I think we do have patients that are on a low residue diet for some of the reasons that Jen mentioned with long strictures or if they have active disease. And we are those patients really do work very hard to get a varied diet. One thing we recommend often are is the IBD aid diet, which you can Google that has sort of a way to approach balanced nutrition for patients who are seeking that low-residue diet.

Interesting. You brought up chewing a second ago.

Yes.

Oh, for sure.

It's funny, I don't know how many Zoom meetings I've been on because this is the world we live in now where people are trying to get lunch when they can and so they're hurrying. And we need to slow down.

Yes.

Oh, yeah, absolutely.

Definitely.

Yeah. Good advice. Excuse me. Excuse me, swallowed wrong. What body changes should I tell my doctor about?

I would say weight loss is huge. Normally, like I said, most of the absorption is at the very end of the small intestine. So a lot of weight loss makes us kind of worry that you have a lot of inflammation going on in that part of the intestine, and you're losing weight because you're just not absorbing. And we have so many patients that say, know I eat and eat and eat and I'm not gaining weight.

So that kind of makes us think, OK you have some inflammatory process going on or you're leaking protein out of the colon if it's a patient with ulcerative colitis that you're just not absorbing any of those nutrients. So normally, we have our patients get lab draws every three to four months, especially if they're on medications just to make sure that they're not anemic, that their white count's fine, that they're not at higher risk of infection if they have low white counts and things like that.

So it's definitely important to follow up with your GI doctor, especially every three to four months just to check these nutrient labs and things like that to make sure. Hair loss is a big one as well too usually if patients are not getting the nutrients that they need, they have inflammation going on, hair loss is a huge thing.

That's a big one, especially because sometimes if we start patients on a medical therapy, they assume it's from the medical therapy or they started a new heart medication so they think, oh, it's probably from that because I started it and then I started losing my hair. And sometimes too as patients get better, sometimes the hair loss is actually delayed. So sometimes they might be getting better from an inflammatory standpoint and then the hair loss comes because the body's trying to kind of make up for lost time.

So usually, hair loss can sometimes be a little bit delayed, but definitely weight loss, hair loss, nausea, vomiting that's caused you to lose your appetite early, feeling full early, sometimes you might feel really hungry, take a couple of bites and then you're like, oh, I think I'm done. Bloating, if your stomach's getting really big after eating meaning things aren't moving through as they should. Abdominal pain, things like that are kind of the biggest ones.

Can rashes and eye issues be a sign of symptoms that are outside of the GI tract?

Definitely. Definitely. So eye issues, if there's anything inflammatory going on in the intestine, it can of pop up in other areas. So eyes are a big one. Sometimes again, if you have blurry vision, trouble seeing things, especially most of our patients are very young with IBD, usually like 18 to 24. So usually, patients that shouldn't be having issues. Usually, older people if they think they have blurry vision, like oh, they probably have cataracts. Younger patients really shouldn't be having those issues. So definitely, if you're having any visionary changes.

Sometimes when patients flare, they get odd rashes, maybe they might see a dermatologist and they may not quite know what's going on. So it's always important to assess other systems that are going on. So GI tract, just to make sure that we're covering all the bases. And a lot of symptoms are associated with the gut because even though it's an intestinal thing, it can definitely pop up in other places like I said, eye, skin, joints. So it's all kind of connected.

So another question from a viewer. Outside of medicine or surgery, does anything help patients with IBD alleviate symptoms. I know we spoke about that a little bit, but with this center we have and all of the wonderful work that's done in the center, I don't know if you could expound on that a little bit.

So one of the things that I love about our IBD Center is that we are really supportive of patients trying complementary approaches to addressing the symptoms of their digestive disease. So Dr. Rubin, Dr. Cohen, Dr. Sakuraba, Dr. Pekow, Dr. Dalal, all of our APNs are really willing to say to you, if there's something that you are interested in trying, acupuncture, a specific diet, yoga, meditation, increasing exercise, increasing sleep, moving, changing your work situation. These are all things that we would support you in pursuing that.

And all of those things, I think individual patients at our support group every month say, this really helped me. This helped me feel better with my disease. And I think our physicians would say, pursue those along with the medical and surgical options that we come to together. And let's see how you are in three months, let's treat it let's treat it like we would, like let's be scientists and say, if you begin a yoga regimen, let's see how it changes your feelings of your pain, abdominal pain, bloating or symptoms otherwise.

Let's see how you're feeling, let's check your labs, let's see what's happening. I think that all of those can be really supportive of patients who are-- and I think also just from an efficacy standpoint, feeling like you're doing something in your life when a lot of things have felt kind of out of control I think is really useful for patients.

One thing we didn't talk about earlier was our GI psychologist, Alyse Bedell, who's wonderful and can also I think be seeking some mental health support that can be really useful for patients with IBD. And I would really recommend that as part of the treatments that do seem to help people, especially just because it can be quite overwhelming, and it can be really disheartening and feeling like you're kind of at climbing this mountain that doesn't seem to be getting any easier. And sometimes, as we know, remission can take time even with really effective medicines.

Wonderful advice. we are about out of time, but I do have one more question from viewers, so I wanted to throw this one out there. Jennifer, I don't know if you want to take this one. What are your thoughts in terms of CBD oil for helping Crohn's disease?

I was just thinking about--

Thank you Teresa for the question.

That was popping in my head when she's thinking kind of things that help with symptoms. So CBD oil, we don't have any issues with. The main thing I would say with follow up and things like that if you're using medical marijuana, things like that, it can help symptoms. I think a lot for a lot of patients it helps. The biggest concern for us is that it can mask symptoms as well too. So it can help with pain. It can't help with anxiety.

So as long as it doesn't take the place of your follow up with your GI because you could be feeling fine with CBD oil and medical marijuana, but if they were to do an endoscopy on you, you could have pretty severe inflammation that's going untreated. And then we think of colon cancer and things like that. So in adjunct to therapy that we're doing, I think that's completely terrific. And whatever helps, I think definitely helps anxiety and makes you feel better, definitely. But it definitely shouldn't take place of regular follow up and endoscopy as well too.

Well, you two are fantastic. I told you that 30 minutes would go pretty quickly.

It did. It did.

We are out of time. Special thanks to our guests for being with us today and sharing all that valuable information. And a big thank you to those of you who watched and participated in our program. Please remember to check out our Facebook page for our schedule of programs that are coming up in the future. To make an appointment, go online to UChicagoMedicine.org or you can give us a call at 888-824-0200. Thanks again for being with us today. And I hope everyone has a great weekend.