Coronavirus Resources and Planning for IBD Patients
Updated: May 14
Freaking out a little bit about the Coronavirus? Not giving it too much thought but want to be smart juuuussstt in case? I'm finding myself falling between those two camps of thought today, so I'm trying to be smart and figure out exactly what it is that I need to worry about and take on to prepare for what may or may not be coming with the coronavirus pandemic.
1. Order and continue taking meds
Major sources, so far, point towards continuing to take all IBD medications as scheduled (like the Crohn's and Colitis Foundation's Patient Guidance). The most important reason for this recommendation is the fact that untreated IBD is a bigger threat to our health right now. If taking your meds feels scary enough that you are making the choice to go off them, be really open and honest with your doctor about it. My next round of meds arrived yesterday and I'm feeling pretty thankful that I have them ready to go on injection day. Ordering meds before the last minute (which I am sometimes guilty of...) may be wise right now.
2. Know the *true* numbers regarding risks and new/developing cases of Coronavirus in your area
There is a difference between hype and valid information. "Pandemic" can be a scary word, so we need to be smart and also protect our psyche. Here in NH (where I live), we have 4 or 5 cases (depending on the source); however, some papers are reporting that the RISK HAS DOUBLED (AHHHH!). There is a big difference in a change of 2 to 4 or 5 cases and a doubling of risk. Just be aware that the media likes to... freak us out sometimes. I don't want to see any cases at all, but I need to stay rooted in the fact that, right now, we are still a low-risk state. This may change, but I find that focusing on true data helps me sleep at night and also makes hard decisions easier in the event that numbers don't look so good down the road. Find total CDC Coronavirus cases HERE.
3. Stock up but don't stock others out
Do I need 15 bottles of clorox just in case? NO, I do not. Should I make sure that I have enough basics on hand to get me through a possible quarantine if that happened in the next few weeks? Sure, I can do that AND leave enough for others.
For my closets, I've made sure that I have:
Tylenol and Iburpofen (for others, not me!)
Cleaning supplies for surfaces and the bathroom
GI comfort supplies like gas-x, wipes, etc.
Dish soap and sponges
At the grocery store this week, I'm stocking up on some extra pasta, cereal, and granola bars... maybe doubling down on my freezer items (avocado freezes well, so, if nothing else, i'll have many delicious frozen smoothies in my future), but i'm not preparing for years of Coronavirus battle. I also put my order together online, so that I knew that they'd have what I needed AND I could avoid the Flu which is ALSO making it's way around my small town again. I grabbed a few items to send into the school - prep for self AND community.
4. Stay connected with your medical team (maybe virtually?)
I need to get my regular labs drawn and I'm making sure to get those ASAP. I need to connect with my doc for a regular visit, so i'm going to ask for a telehealth appointment (actually, I'm a little behind so I have GOT to make sure that I get that scheduled now...). In the Lancet today, it was published that China has been using virtual visits for IBD care as a recommended precaution. Moral of the story: regular IBD and general health care must continue in spite of all that is distracting right now. Keep up with labs, stay in contact with your provider, and keep them in the loop of how you're feeling. Continue to stay on top of your general IBD care.
5. Stay connected with your IBD community
The IBD community is *in my mind* known globally for its supportive and resilient approach to community disease management. I have definitely felt this to be the case with many organizations and also with smaller, patient-led blogs, chats, groups, and initiatives across the globe. If you aren't already, following and connecting with these groups to help navigate advice beyond "wash your hands" can be vital in the weeks to come, especially if some of us become faced with isolating quarantines for weeks on end. There are so many amazing people to follow on Facebook and Twitter. To name a quick few, make sure to check out the Crohn's and Colitis Foundation, Girls with Guts, AboutIBD, IBDMoms, MondayNightIBD, and IBDMD (and everyone that he follows!). Everyone commenting and providing valuable advice in these groups are fantastic patients, advocates, and clinical partners.
If you can... make sure to check in on someone (virtually, for now), too.
6. Work out alternatives for work
I work in a hospital... so we're already talking about who can/should work from home beyond the CDC recommendations (for travel or illness). If you haven't yet heard of a plan from your employer, you should be checking with them. Are you able to work from home? Can you get access to a laptop and take on some projects or tasks from home? I even pitched to my department today that we should consider looking at projects that we've wanted to work on but haven't had the time to take on. Advocating for the ability to get one of those things off the perpetual "to do" list for the office may help bolster some at-home work time even before the rest of the office is working from home.
Of course, if it's needed to support anything related to IBD, and it's proven to support the ADA requirements for reasonable accommodations, don't forget the fact that we have these supports in place, as well.
7. CALL AHEAD if you think you have Coronavirus symptoms, follow CDC guidelines, and add your name to the IBD registry
So what to do if you think that you may actually have the Coronavirus? First thing, CDC says to call your primary care provider and talk to them. Leveraging technology can really impact the next steps for this pandemic. Almost all offices are prepared to talk you through the screening questions and connect you with a *safe* location for next steps, if they are needed. If you just show up at an Emergency Room or Urgent Care without preplanning, this may further expose others, so avoid that unless you really need emergency care that can't wait for a call (in that case - just GO). It may be helpful to know that the American Gastroenterological Association (AGA) published an infographic recently as a summary of findings which indicate GI symptom as a possible early first symptom of the Coronavirus. That actually feels more stressful for me because now i'll wonder is it IBD, IBS, OR Coronavirus?
Next, once you've received a positive result of Coronavirus and followed the CDC guidelines to STAY HOME, register here at the IBD registry to help support research into how this novel virus may impact the IBD community. Everyone is asking questions, but we don't have a lot of the data to give clear guidance... yet. With time, i'm confident that we will get to a clearer picture of how IBD patients with the Coronavirus will fair (and the big question: should we take our meds!? Right now, YES.) .
This probably goes without saying, but if you receive a positive result, make sure to connect with your medical team to keep them up-to-date on your status and any needs and questions that you may have. With technology, I wonder if we may just be able to "flatten the curve" (AKA, limit the exposure) or this latest pandemic.