Tips for Telehealth and Managing Your IBD Care During the COVID-19 Pandemic

One of the things I do a lot as a patient with many chronic illnesses is visit all sorts of healthcare providers for the maintenance of my care. However, during this time, when many non-essential visits to the doctor’s office or to medical facilities are not recommended, what do we do? In the last 6 weeks, many providers have ramped up a service we are now calling telehealth. That is, many doctors are offering virtual visits to us from the convenience of our home. While it isn’t the ideal way to examine a patient, it certainly gets the job sufficiently done for many of us who are struggling to manage and stay on top of our chronic illnesses during the COVID-19 pandemic.

Getting Started with Telehealth

If you have a number of providers at different facilities, telehealth can be a lot to manage as is in my case. So here’s the 411 on getting started with telehealth for those of you who might just be acquainting yourselves:

Call your provider to schedule a telehealth appointment. The staff are mostly working remotely and can put you on the schedule and coordinate with you so that you can be ready for your first telehealth appointment with that provider.
Download the app(s) that your provider or his/her practice or hospital system might be using. Many use MyChart, FollowMyHealth, Doxy.me, MediSprout, PortalConnect so on and so forth and may have add-ons to Zoom or other platforms that allow for virtual, HIPAA-compliant conversations to take place virtually.
Acquaint yourself with the app before your virtual appointment. This means learn how to use it and if you need to, reach out to your doctor’s office or their tech support with any questions beforehand to minimize issues during your doctor’s appointment.
Complete all HIPAA compliance and patient registration paperwork beforehand via the app so you’re not scrambling for your virtual appointment at the last second. *Please note that telehealth is generally being covered by health insurance due to the COVID-19 crisis and co-pays are mostly being waived at this time.

Managing Your IBD Via Telehealth

All this said, we all know that telehealth can’t possibly be the same as a regular doctor’s office visit. So how do we make the most of our time with our providers so that we can manage our chronic illnesses appropriately? The key here is to always prepare a list of questions beforehand to address symptoms. This requires thinking through general well-being, symptoms, medications, diet, nutrition and mental health during this very difficult time. I’ve put together a list of ways to address and manage our chronic illnesses efficiently and effectively via telehealth:

Talk to your doctor via telehealth regarding staying on medications (and clinical trials) during COVID-19 and what he/she recommends at this time for your individual case, including precautions you can take. *Remember that having IBD and/or colorectal surgery (ostomy, j-pouch) as per Dr. David Rubin and International Organization for the Study of Inflammatory Bowel Disease guidelines does not necessarily put patients at greater risk for contracting COVID-19. It’s the medications we are on that can make us immunocompromised and more susceptible but there is a thought that certain medications may prevent the virus from causing an acute cytokine (inflammatory) storm in our bodies.
If in a flare, contact your doctor immediately and describe symptoms as accurately as possible via telehealth. Does your doctor want labs or stool studies or does he/she want to escalate treatment right away conditions on previous testing and symptoms? Don’t wait too long to reach out to your doctor about a flare-up as you don’t want to be exposed to the virus in a flare-up as that can result in a cytokine storm per the IOIBD guidelines. Also, medications like Prednisone, for instance, are generally not a good option at this time per IOIBD guidelines. *If on Prednisone, speak to your doctor about switching to potentially Budesonide or starting a biologic therapy as those may be safer options per IOIBD guidelines.
Report all symptoms of COVID-19 immediately, including but not limited to shortness of breath, loss of taste, loss of smell, diarrhea, etc. Your doctor will decide whether or not it is necessary for you to be tested for COVID-19 based on symptoms or if there are other medications you can take. *Keep in mind it is allergy season right now in some parts of the world and respiratory symptoms may overlap. Also, remember there is a potential fecal-oral route of transmission of this virus per IOIBD guidelines so if you’re having diarrhea, important to report as soon as possible for your doctor to work up whether this is an IBD-related response or COVID-19.
Ask your doctor about infusion center recommendations based on where you reside. Does he/she think you should go to the infusion center or have a nurse come to your home? In either case, what precautions should you take? *Remember you have every right to pre-screen the infusion center and ask them on the phone what precautions they are taking to keep you safe. You also have the right to ask the home nurse to wash his/her hands for >25 seconds and wear a mask and gloves at all times.
If any of your extraintestinal manifestations or non-IBD related conditions are flaring, talk to your doctor about next steps. It may be as simple as making a referral out to another specialist. But many times a gastroenterologist can diagnose things like episcleritis/uveitis (eye inflammation), erythema nodosum (skin manifestations) via telehealth and can address accordingly. They can also address joint pain or other digestive issues you may having. We just have to ask and try. If nothing else, it’s always helpful to connect with your ophthalmologist, rheumatologist, dermatologist as well to help manage the condition remotely as best as possible.
Talk to your doctor about when your next routine imaging (MR enterography, CT scan) and colonoscopy might be. At this time, to reduce the risk of exposure to COVID-19, many doctors are not scheduling elective procedures so it may be best to come up with a plan for how your routine work-ups might be spaced and done. *Many doctors are only scoping and seeing IBD patients right now if there are emergencies such as severe GI bleeds, bowel obstructions, etc.
Ask your doctor how it may be possible to prevent exposure and infection with COVID-19. What kind of preventative techniques, if any, should we follow? Is there a certain type of diet or are there supplements I can take to ease symptoms and perhaps prevent or slow onset of virus? As of now, nothing is known to prevent COVID-19 onset but IBD dietitians are saying to check with our doctors about supplementing with Vitamin C, D and/or zinc, etc. It is also important to focus on staying hydrated especially for those of us without a colon or with shorter guts. Speak to your doctor and/or dietitian about oral rehydration solutions (ORS) and if you absolutely need to, about going in to get fluids at an infusion center before it becomes an emergency.
Talk to your doctor about what might happen medication-wise should you contract COVID-19. What is the general protocol? Is he/she pulling patients off certain medications? Why or why not? This can be a very personalized approach based on the patient but it may help to allay anxiety on our end to know that our doctor is confident and on top of managing our care during the pandemic. *There are guidelines that have been released via the IOIBD and the AGA for clinicians on when to stop IBD medications and how to put IBD patients back on medications after recovering from COVID-19.
Ask your doctor to send prescriptions to a home delivery service and ask for 3-month prescriptions if you’re on a medication long-term. Many insurance companies have in-house pharmacies that can dispense a 3-month supply to you at home. There are also pharmacy delivery services that can deliver your prescriptions to your doorstep.
Ask your colorectal surgeon to keep your prescription for ostomy supplies up-to-date so you can order and receive ostomy supplies as soon as possible without any hiccups. *Always wash hands thorougly before changing your ostomy device, PICC Line dressing, drains or wound packing.
If you have been diagnosed as COVID+, please ask your doctor to report your case and the specifics via the SECURE-IBD registry so that doctors and scientists can learn from your case and others to manage our care more effectively as IBD patients and increase recovery rates while reducing hospitalizations and mortality rates.
And last but certainly not least, this has been a very difficult time for many of us emotionally. If you are struggling, please speak up and consult a mental health practitioner. There are apps like TalkSpace you can use in addition to many GI psychologists available via the Rome Foundation or psychotherapists via Psychology Today.

Following as many of these tips that might be relevant to you can help you optimize your time during telehealth visits and reduce anxiety during these uncertain times. It also ensures we are staying on top of care even if we aren’t physically able to go into the office.

So, own your Crohn’s, own your chronic ailment, and take charge of your care by reaching out to your doctors via telehealth to best manage your illnesses and to stay out of the hospital during the COVID-19 pandemic.