Coronavirus (COVID-19) information for patients with inflammatory bowel disease
April 17, 2020
[MUSIC PLAYING] Patients who are infected with the novel coronavirus, called SARS-CoV-2 may develop a disease called COVID-19. The symptoms of COVID-19 are most frequently fever, cough, and other respiratory symptoms, which might progress to shortness of breath. Other symptoms people commonly have include a fatigue or muscle aches. More recently, colleagues have described that you can have digestive symptoms associated with the infection with the SARS-CoV-2 development of COVID-19. The digestive symptoms most often described include a loss of appetite, but also a loss of smell or taste and abdominal discomfort or more frequent bowel movements or loose stools.
In patients who have inflammatory bowel disease, where the primary problem with their underlying condition affects the intestines, having digestive symptoms can be confusing, and it could be confused for activation of the inflammatory bowel disease. We haven't seen enough patients who have IBD who've developed COVID-19 to know whether the patients have different types of symptoms, but the unique concern here is to distinguish between someone who is having a relapse of their Crohn's disease or colitis, compared to someone who might be having symptoms of an infection. And to make it even more complicated is the infection actually triggering a relapse. So we're working hard with our patients and with additional research to try and figure some of this out.
Patients who have Crohn's disease and ulcerative colitis have a chronic condition in which the immune system of the intestines, which exists to protect us from getting infected or having other problems, is overactive. So what happens in patients with Crohn's and colitis is that the immune system the intestine continues to be activated and cause symptoms or problems. Because of this and because we haven't yet found the cause of these conditions, the primary treatment for many patients is to use immune modifying or immune-suppressive therapies. It makes sense then to be concerned that if you're on a therapy that's modifying your immune system, are you at increased risk for infection?
Some of the therapies we use have been associated with increased risks of viral infections, including influenza, the common viral infection we talk about, as well as other viral infections, like Epstein-Barr virus or even viruses that can cause warts on your hands or other things. Because of this, we've had a particular interest in whether our patients with IBD and the therapies they're on might increase their risk for infection with the novel coronavirus that causes the COVID-19 pandemic.
So far, we haven't seen that and in fact, quite the contrary. We believe some of these therapies may actually prevent progression of COVID-19, and some of them are actively being studied for patients who are suffering from COVID-19 to control the disease. It's important to understand that the goal of treatment for Crohn's disease and ulcerative colitis is not to immune suppress the patient. It's to modify that overactive immune system so that it's under better control. So in general, we don't think of our IBD patients at baseline as being immune suppressed. In fact, it's the opposite.
Their immune system is a bit overactive. And when we treat them effectively, our general strategy is to just turn down the immune system enough, so their body takes over. And we minimize the risk that they're going to have any infections.
So our general message to patients right now has been stay on your existing therapies and stay in remission. And obviously, for concerns about this, we encourage them to call their doctors and have conversations about whether there might be any adjustments to be made.
Patients with inflammatory bowel disease who develop COVID-19 will have the same symptoms as the general population of patients who don't have inflammatory bowel disease. These symptoms include fever or cough or shortness of breath or other congestion in the upper airways. It can also be that it presents with digestive symptoms, abdominal discomfort, loss of appetite, or change in your bowel habits.
Because patients with inflammatory bowel disease are often on immune therapies, it's important that you let your doctor and your doctor's team know right away if you develop some of these symptoms or if you're worried that you might have developed COVID-19. We can test you for that, and now we have reliable testing and results that come back quite quickly. And then we can make some modifications.
Based on the treatments you're on, we might have you hold your therapy for a couple weeks to let this pass. And most patients will recover uneventfully from this problem. We know so far, based on an international registry of inflammatory bowel disease patients and patients who developed COVID-19, that there does not appear to be an increased risk overall in patients with IBD developing COVID-19 or having a different set of outcomes from COVID-19.
What that means is that most people recover uneventfully, regardless of what treatments they're on. We're obviously studying this carefully, so we understand it more. But the most important thing to know is that you should be calling and having a conversation with your doctor, with your doctor's team of nurses and nurse practitioners, and have a good sense for when it would be important to be tested and when we might have you hold your therapies for a couple of weeks.
I don't recommend that you do that on your own and stop your medicines without talking to us because we really do want to make sure we have a good handle on this for you. Most people who have this won't require hospitalization, but if you get sicker or develop more shortness of breath, it is important to know that we're here for you. We're available, and we can take care of this together. Please be in touch with us.
University of Chicago Medicine section chief of Gastroenterology, Hepatology and Nutrition, David T. Rubin, MD, answers common questions about coronavirus (COVID-19) and inflammatory bowel disease, which includes Crohn's disease and ulcerative colitis.
What are the symptoms of COVID-19 and are they different for inflammatory bowel disease patients?
Patients who are infected with the novel coronavirus called SARS-CoV-2 may develop a disease called COVID-19. The symptoms of COVID-19 are most frequently fever, cough and other respiratory symptoms, which might progress to shortness of breath. Other common symptoms include fatigue or muscle aches. Some digestive symptoms have been associated with COVID-19 as well, including a loss of appetite, a loss of smell or taste, abdominal discomfort, more frequent bowel movements or loose stools.
We haven't seen enough IBD patients who've developed COVID-19 to know whether these patients have different types of symptoms but for patients with IBD, having digestive symptoms could be confused for activation of IBD. The unique concern here is to distinguish between someone who is having a relapse of their IBD, compared to someone who might be having symptoms of an infection. We're working hard with our patients and performing additional research to figure this out.
Are inflammatory bowel disease patients considered immunosuppressed? Do they have a higher risk of contracting COVID-19?
Patients who have Crohn's disease and ulcerative colitis have a chronic condition in which the immune system of the intestines is overactive. The goal of IBD treatment is not to immune suppress the patient, but rather to modify their overactive immune system so it’s under better control. We don't think of our IBD patients at baseline as being immune suppressed. In fact, it's the opposite. When we treat them effectively, we turn down the overactive immune system just enough so their body takes over, and we minimize their risk for infections.
Being on immune therapies for inflammatory bowel disease may increase the risk for some viral infections, but based on the information we have so far, we have not seen an increased risk of contracting COVID-19 in patients who are on the standard IBD therapies. Of the Crohn’s and ulcerative colitis patients we have seen who developed COVID-19, their course and recovery is exactly like what we're seeing in the general population. Our general message to patients right now is to stay on your existing therapies and stay in remission. If you have any concerns, please make an appointment or video visit with your doctor and have a conversation about whether there might be any adjustments to be made. Learn about our online second opinion service.
Patients with inflammatory bowel disease who develop COVID-19 will have the same symptoms as the general population of patients who don't have IBD: fever, cough, respiratory symptoms (shortness of breath) or new onset diarrhea. Let your doctor know right away if you develop some of these symptoms or if you're worried that you might have developed COVID-19.
If you have been diagnosed with COVID-19, based on the treatments you're on, you may need to stop your therapy for a couple weeks. I don't recommend that you stop your medicines without talking to your doctor first. Based on an international registry of IBD patients who developed COVID-19, there does not appear to be an increased risk overall in patients with IBD developing COVID-19 or having a different set of outcomes. Most IBD patients who develop COVID-19 won't require hospitalization, but if they get sicker or develop more shortness of breath, it is important to know that we're here to help.
Managing Crohn’s disease and Ulcerative Colitis During COVID-19 Pandemic
You should keep your appointments, but they are going to be in a different form than you might be used to. Most of our patients are having their appointments by telephone, by MyChart, or even now by video visits. So we've been able to shift many of our stable patients to those types of visits and we can handle many of your concerns and questions as well as your routine healthy follow up visits doing it this way.
What you should also know is that if you get sick, we are completely available, and we can still see you. And we would work hard to figure out what the best way to do that is. It is safe to come see us in the clinic if you need it, but we'll work with you to figure out how and when that should be done. We have, on the other hand, rescheduled or deferred most of the elective procedures of colonoscopies or other endoscopic procedures. Most of these procedures that we do to look for precancerous changes or for other indications we feel can be delayed until we're done with the pandemic and we can move forward safely.
If you need a procedure because of something that's time sensitive or essential in other ways for your management, we certainly are still offering that and doing it. The best thing to do is to call your doctor or to call your doctor's team so that you know what options are available for you. But don't cancel your appointments and certainly don't stop your medicines.
Some of our patients who receive therapies for inflammatory bowel disease are receiving those therapies by intravenous infusions. And that means they go to an infusion center either at the University of Chicago Medicine or some of the outlying centers that we work with those centers are safe. It's important to stay on schedule with your infusions. But we have specifically asked and really required that all the infusion centers have a protocol in place to keep our patients safe and also, to keep the nurses who work there safe.
The protocol needs to include screening the patient for any known contacts with COVID-19, screening the patient for any symptoms to suggest COVID-19, including fevers or respiratory symptoms, or as I mentioned, digestive symptoms can sometimes be a clue. And the other things that the infusion centers need to do is to space patients apart at least six feet, to have a single provider working with the patient, meaning one nurse to patient ratio, so that there are not multiple people exposed to the patient. And the provider should all be wearing masks and gloves and offering those to the patient if they don't already show up with them.
The final part of keeping infusion centers safe is to make sure that after a patient has received their infusion, the chair and the surrounding area is appropriately cleansed and cleaned. If you know that your infusion center is doing that-- and I can tell you that the University of Chicago Medicine is doing it and the infusion centers that we work with in the Chicago land and Northwest Indiana areas are doing it-- then you should keep your appointments, make sure you get your treatments, and stay in remission. Delaying the infeasible therapies or for that matter, many of our other treatments, can lead to relapse and loss of response to the drugs. We definitely don't want to deal with that as a consequence of COVID-19. We want to keep you healthy.
The medications we used to treat inflammatory bowel disease include a variety of therapies that work by different mechanisms or target different parts of our immune system. We fortunately, have many options that we've been using to treat patients with Crohn's disease and ulcerative colitis. Some of them are older, like the medicines that are immune modulator therapies called thiopurines or azathioprine and 6MP, or another medicine called methotrexate. And more recently, we have a variety of biological therapies which target different components of the immune system.
The goal of these therapies is not to suppress the immune system so patients are more susceptible to infections, and that would include this particular coronavirus infection, but rather, to control the overactive inflammation of the bowel and let the body heal itself and catch up. We don't always know how to do this perfectly, but we've gotten much better at it. Our biological therapies, for example, aim at specific directed components of the immune system. A whole class of therapies called anti-TNF treatments focus on an inflammatory protein called TNF or tumor necrosis factor. The TNF protein is elevated whenever somebody has an infection or overactive immune response, and therefore, targeting it works quite well for many people with Crohn's and colitis.
The treatments that are used in the anti-TNF class include drugs that you may have heard of called Remicade or Humira or Cimzia or Simponi. And these therapies are recommended to be continued at the current time even with the pandemic occurring. The other therapy we talk about is a drug that targets the white blood cells that might be on their way to your bowel. That therapy is known as Entyvio. And Entyvio works by actually blocking those white blood cells from getting out of the blood vessels into your intestines. So it's a more selective therapy in that it only works on the intestinal immune system. And therefore, it may have a different profile and it's something that we think of in a different way when we talk about risks for infections. The risk for infection might be lower than our anti-TNF and other treatments.
And lastly, we have a treatment that's known as Stelara, which targets two other inflammatory proteins that go up. And they tend to be proteins that are elevated just where there's inflammation in your body. So it's a bit more selective, but it still works on the entire body. So that therapy we also think of a bit differently. The general message regarding all of these therapies is that if you are in remission and the treatment you're on is working for your Crohn's and your colitis, you should be staying on that therapy, and you should be communicating with your health care team about any additional thoughts or changes that might be necessary.
For most patients, we are not recommending that they stop treatments, and we are recommending that they adhere to the social distancing and stay at home recommendations. And obviously continue to be very careful about washing their hands and not touching their face. Remember that these treatments are keeping your inflammatory bowel disease under control. If the IBD becomes active the problem then is that you might need to be on corticosteroids like prednisone, which we worry can actually make things worse for you and definitely have a higher risk of infections. So it's best to stay in remission and to do the best you can to be at home, keep your hands clean, and to follow the other recommendations as they're coming out.
Many patients have asked whether they should stockpile their medications or whether there is going to be a national shortage of their therapies. The good news is that the answer to that question is, no. We have assurances from the pharmaceutical companies that there's plenty of medicine available and that they can stay on their schedule, refilling them appropriately, and not worry about this.
Related to that, I would also advise you not to be taking additional supplements at this time. Some patients have asked whether they should be taking extra vitamins or zinc or other things to prevent a viral infection. There's no data to support that and we don't want you to start taking new things now that might have a whole other set of side effects or problems that would confuse us during this important time.
Part of an international collaboration to develop guidance for inflammatory bowel disease patients who develop COVID-19 is the important distinction between having symptoms from the infection and having an activation of IBD. So if you have a flare of your IBD, remember that this could be part of the COVID-19 presentation. It might also just be that your IBD is flaring. There are many reasons people flare from their inflammatory bowel disease. One of them that patients often tell us is stress, and of course, we're all under stress right now.
The other would be if you had stopped your medicines or if your routine in some other way has changed. You might not be exercising like you used to do. Your diet might have changed because you're staying at home or doing other things. And so there are many different reasons to think that you might actually be relapsing. The good news is that we have ways to sort this out that don't require you to necessarily come to the clinic or have any procedures done. And with some simple tests, we can often distinguish between what is a flare of your inflammatory bowel disease and what might be due to an infection. Or in some cases, what might be due to stress, but not an activation of your inflammatory bowel disease.
Then we do have good treatments available. And many of these treatments are quite safe to start even when we're worried about the pandemic going on. There's guidance that we've now developed and we're publishing that will give people some more information about which treatments to use and when to use them.
But the international group of experts said that if a patient has more severe inflammatory bowel disease, even during this pandemic, the usual treatments we use for IBD are safe and appropriate to be used in this setting. So it's important to know that you shouldn't ignore your IBD symptoms or any of your other digestive symptoms. You should be in touch with us so we can work together and get it back under control quickly. The last thing we want is for you to be living with these symptoms and afraid to notify us or afraid to come to the clinic if we need you to when, in fact, we could take care of you and get you better.
We know that there are a lot of inflammatory bowel disease patients who are working as essential workers right now and can't be working from home, despite the recommendations for people to try to do so. It's an important question to know whether these individuals should be taking time off of work or whether they should be doing other things to protect themselves above and beyond the usual recommendations. The way to think about this important question is first to know what the likelihood of exposure and contact with people who have COVID-19 is.
For example, those who are working as paramedics or some of the health care professionals doctors, nurses, technicians, respiratory therapists, pharmacists who are interacting with patients are right in front of many people who have COVID-19. They're a high risk of exposure. And then there are others who are working but are not necessarily as exposed as often.
And the second question is the availability of personal protective equipment if there's a shortage of PPEs such that the person who is going to be exposed to these patients can't protect themselves, it is appropriate for them to ask for a leave or to get support from their doctor's office to do so. It's also important to know that if you have active and appropriate personal protective equipment, you can be working with patients, you can be doing a lot of your job as long as you're also thoughtful about not touching your face, washing your hands very carefully, and making sure that you're talking to your doctor and your doctor's team to know that you're in remission, and that your medications are being managed properly.
I know that this is stressful for many people who are in these situations, and it ends up being a case by case basis. But for many of them, we reassure them. We, of course, thank them for their vital role in helping us through this difficult time. And then we work with them so they understand how they can modify their risk or protect themselves better.
We've learned a bit about the coronavirus and COVID-19 in pregnant women. And it applies to pregnant patients who have IBD, as well. What we've learned so far is that when women who are pregnant develop COVID-19, they recover similar to the general population. And although their babies might be born a bit early or a little underweight, for the most part, the babies seem to do well. And in the early experiences that were reported, the babies did not have the coronavirus infection.
What we haven't studied enough yet because of the timing of all this is, what happens if a woman who's pregnant becomes infected with the coronavirus in the first trimester. The data we have from prior coronavirus epidemics and other types of infections suggests it might be OK. But because this is a novel coronavirus and it's the first time we've seen this, we still need to be extra careful.
What we recommend to our patients who have IBD and are pregnant is that first, they make sure they're staying in remission from their IBD. We definitely don't want them to relapse because they stop their IBD therapies and then they need to be in a health care system or hospitalized and increase their risk. We also know that when IBD is in remission, the baby does well and the mother does well, so that's important to keep in mind.
But we're also recommending that our IBD patients who are pregnant take extra precautions for what we call strict social isolation. That might mean that in addition to staying home, you're also restricting visitors in specific ways. And even when you need to go out to the grocery store, you wear a mask, you wear gloves, you take extra precautions, and wash your hands, as we're recommending to everybody. But in this particular case, we'd like you to be extra careful. We don't have data yet to say that there's more to worry about, but we don't want to find out later that we were wrong about this. So I think it's completely reasonable to be on alert and to take those precautions.
I don't say this to make people more stressed than they already are. I'm just trying to provide people with knowledge so that they can be empowered to take good care of themselves and to prevent any problems from happening.
Should I keep my IBD appointments at this time?
Yes, you should keep your appointments, but do so virtually, if possible. Most of our IBD patients are having their appointments by telephone, MyChart, or video visits. We can handle many of your concerns and questions as well as your routine healthy follow up visits this way. If your IBD symptoms worsen and you are feeling sick, it is safe to come to an appointment at the clinic. We will work with you to find the best way to make an appointment happen. We have deferred most elective colonoscopies or other endoscopic procedures at this time. If you need a procedure because of something that's time sensitive or essential in other ways for your management, we certainly are able to do that. The best thing to do is to call your doctor to find out what options are available for you.
If I am currently receiving infusion treatment for IBD, is it safe to go to an infusion center?
If you know that your infusion center is following proper safety protocols, then you should keep your appointments and get treatment. The University of Chicago Medicine is following safety protocols including screening patients for any known contacts with COVID-19 and any COVID-19 symptoms, spacing patients at least six feet apart and having a single provider working with each patient to limit exposure. All providers are wearing masks and gloves and offering those to the patient if they don't already have them. After a patient has received their infusion, the chair and the surrounding area is appropriately cleaned.
Delaying infusible therapies or other treatments can lead to relapse and loss of response to the drugs.
Which IBD medications suppress the immune system? Is it safe to take these medications?
The medications we used to treat inflammatory bowel disease include a variety of therapies that work by different mechanisms or target different parts of our immune system. Sometimes we recommend immune modulator therapies called thiopurines or azathioprine and 6MP, or another medicine called methotrexate.
More recently, we have a variety of biological therapies which target different components of the immune system. A class of therapies called anti-TNF treatments focus on an inflammatory protein called TNF or tumor necrosis factor, which is elevated whenever somebody has an infection or overactive immune response. Anti-TNF drugs such as Remicade, Humira, Cimzia or Simponi are recommended to be continued at the current time.
Another drug called Entyvio targets the white blood cells that might be on their way to the bowel, blocking them from getting out of the blood vessels into the intestines. This is a more selective therapy in that it only works on the intestinal immune system, and therefore, the risk for infection might be lower than with anti-TNF and other treatments.
Lastly, we use a treatment known as Stelara, which targets two other inflammatory proteins that tend to be elevated only where there is inflammation in your body. This is a more selective treatment, but it still works on the entire body.
The goal of these therapies is not to suppress the immune system so patients are more susceptible to infections, but rather, to control the overactive inflammation of the bowel and let the body heal itself.
The general message regarding all of these therapies is that if you are in remission and the treatment you're on is working for your Crohn's disease and ulcerative colitis, you should stay on that therapy during the COVID-19 pandemic. We recommend that you continue to communicate with your health care team about any additional changes that might be necessary. For most patients, we are not recommending that they stop treatments. It is important to remember that these treatments are keeping your IBD under control. If the IBD becomes active, we may recommend corticosteroids like prednisone, however they can increase your risk of infections. This is why we want our patients to do their best to stay in remission. We recommend patients stay home as much as possible, wash hands frequently and follow any guidelines from our public health officials, such as the Centers for Disease Control and Prevention (CDC).
Should I be concerned about a supply shortage of IBD medications?
No. We have assurances from the pharmaceutical companies that there is a sufficient supply of medicine available. We recommend that patients with Crohn’s disease or ulcerative colitis stay on their medication schedule and refill their prescriptions appropriately.
Should I take supplements like vitamin c or zinc to help prevent coronavirus?
At this time, I would advise against taking additional supplements, such as extra vitamins or zinc to prevent a viral infection. There is no data to support their effectiveness and starting a new supplement might cause other side effects.
How do I know the difference between an IBD flare-up vs. COVID-19?
It may be hard to tell the difference between a flare up and COVID-19 infection because their symptoms can be similar. Loss of appetite, abdominal discomfort, more frequent bowel movements or loose stools are symptoms of both conditions.
We have testing options that do not require an in-person visit. These simple tests can help identify the cause of your symptoms.
What should I do if I think I’m having an IBD flare-up?
We have treatments available that are safe to start even while this pandemic is going on. There's guidance that we've developed and published that will give people more information about which treatments to use and when to use them. If a patient has more severe inflammatory bowel disease, the usual treatments we use for IBD are safe and appropriate to be used in this setting. Patients shouldn't ignore their IBD symptoms or any other digestive symptoms. Keep in touch with your physician to get it back under control quickly. The last thing we want is for patients to be living with these symptoms and afraid to notify their doctor or come to the clinic.
Any advice for essential workers with IBD who are unable to work from home?
We know that there are a lot of IBD patients who are essential workers right now and can’t work from home. It is important for these patients to recognize their likelihood of exposure and increased chance of contact with COVID-19-positive patients. For example, paramedics, doctors, nurses, technicians, respiratory therapists and pharmacists who are interacting with patients with COVID-19 have a high risk of exposure and should make sure they protect themselves as much as possible.
The advice we’ve been giving the general public should be followed the same by IBD patients. This includes social distancing, washing hands, cleaning surfaces and staying at home when possible. We also recommend keeping in touch with your doctor to know you are in remission and making sure your medications are being managed properly.
Are there extra precautions that pregnant women with IBD should be taking during the COVID-19 pandemic?
We've learned some information about COVID-19 in pregnant women, which applies to pregnant patients with Crohn’s disease or ulcerative colitis as well. We have seen that women who are pregnant and develop COVID-19 recover similarly to the general population. Although their babies might be born a bit early or a little underweight, for the most part, the babies seem to do well.
At this time, we have not seen cases of pregnant women becoming infected with COVID-19 in the first trimester. The data we have from prior coronavirus epidemics and other types of infections suggest patients may be fine. Because this is a novel coronavirus, we still need to monitor those patients carefully.
We recommend that our pregnant patients with inflammatory bowel disease make sure they're staying in remission from their IBD. Stopping their IBD therapies could cause a relapse and would require hospitalization which may increase their risk of exposure to COVID-19. We also know that when IBD is in remission, the baby and mother both stay healthy. It is important that our IBD patients who are pregnant take extra precautions and follow strict social isolation. That means in addition to staying home, they should also restrict visitors from entering the home. If pregnant patients with IBD need to go out to the grocery store, they should wear a mask and gloves, and carefully wash their hands, as we're recommending to everybody. We don't have data yet to say that pregnant patients with IDB have more to worry about, but we want them to be extra careful.
David T. Rubin, MD
Dr. Rubin specializes in the treatment of digestive diseases. His expertise includes inflammatory bowel diseases (Crohn’s disease and ulcerative colitis) and high-risk cancer syndromes.See Dr. Rubin's physician bio
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