You can think of this as a Public Service Announcement for the immune compromised. Like many of my peers in the chronic illness community, I may appear healthy on the exterior, but the biologic medication I depend on to manage my Crohn’s disease, knocks out my immune system. In my family alone, so many face the same reality:
-my 30-year-old cousin whose had two heart transplants and a kidney transplant
-my cousin’s 2.5-year-old son battling Leukemia
-my cousin’s wife who has Crohn’s and is on Remicade
-my cousin who lives with Ehlers-Danlos Syndrome among other chronic conditions
I’ve been part of the immune-compromised population since I was 24 years old. Over the past 12 years, never did I dream of the reality we’re currently living in. When I first heard about Coronavirus, I wasn’t all that alarmed. As the conversations and situation continues to become more serious, I’m getting more anxious and concerned.
Here are the latest recommendations shared by The Lancet as this relates to the IBD population. I found these guidelines helpful in drowning out the noise of all the information being thrown our way.
Potential risk factors for infection
- Patients with IBD on immunosuppressive agents
- Patients with active IBD and malnutrition
- Elderly people with IBD
- IBD patients who frequent medical clinics
- IBD patients with underlying health conditions, such as hypertension and diabetes
- Patients with IBD who are pregnant
Medication for patients with IBD
- Continue current treatment if your disease is stable, and contact your doctor for suitable medicine if you’re flaring.
- Use mesalamine as prescribed, this should not increase the risk of infection.
- Corticosteroid use can be continued, but be cautious of side effects.
- A new prescription of immunosuppressant or an increase in dosage is not recommended in epidemic areas.
- Use of biologics, such as the anti-TNF’s infliximab (Remicade) and adalimumab (Humira) should be continued.
- If Remicade infusion is not accessible, switching to a Humira injection is encouraged.
- Vedolizumab (ENTYVIO) can be continued due to the specificity of the drug for the intestine.
- Ustenkinumab (Stelara) can be continued, but starting this requires infusion center visits and is not encouraged.
- Enteral nutrition might be used if biologics are not accessible.
- Tofacitinib (Xeljanz) should not be newly prescribed unless there are no other alternatives.
Surgery and endoscopy
- Postpone elective surgery and endoscopy. (I’ve heard of many centers and hospitals delaying until June at this point.)
- Screening for COVID-19 (completed blood count, IgM or IgG, nucleic acid detection, and chest CT needed before emergency surgery.
Patients with IBD and fever
- Contact your GI about visiting an outpatient clinic. Consult with your physician about possibly suspending the use of immunosuppressant and biologic agents and follow appropriate guidance if COVID-19 can’t be ruled out.
While the unknown is scary—as a chronic illness community we need to recognize how well-equipped we are mentally and emotionally to live life during these uncertain and uneasy times. According to the National Health Council, 133 million Americans live with incurable or chronic diseases, many of which are treated with medications that make us susceptible to illness.
It can be unnerving to see peers downplay the severity of the situation and making light of the fact they have nothing to worry about. If you have a friend or family member who’s immune compromised or a loved one over age 60, you have reason to be empathetic. Chances are you know many people who fall in these categories. Going against the recommendation and living your life like nothing is going on right now, puts people like me and so many others in jeopardy. It’s irresponsible and says a great deal about your character.
To those of us in the high-risk category, this quarantining and social distancing is more than an inconvenience or a change in our plans. We know that if we happen to come down with COVID-19, our bodies may not be able to fight it.
The healthy are getting a glimpse into what it feels like to live with a disease that can blindside you and flip your world upside down at any moment. After years of juggling all the variables and the what-ifs, we know how to protect ourselves. We know living in fear takes away from our joy.
Rather than feel like we’re less than, we can continue to choose to see the beauty of what is right in front of us within our homes, with those who matter most.
Rather than feel like we’re goners, we can follow our care team’s recommendations, pay attention to facts over fake news, and stay on our medication. It’s believed the threat of untreated IBD is a bigger concern right now, and if you flare and need steroids, your immune system will take even more of a hit. If you are flaring and have a fever, physicians are now ruling COVID-19 out first.
Rather than waiting for the worst, we can be proactive and use the tools in our arsenal to stay as healthy as possible and use trusted resources to guide our decision making. Wash your hands even more than you’re used to, spend time outside in your yard, never share food or drink, change your clothes if you’ve left the house.
Rather than glue ourselves to the TV or scroll through our phones, we can take time for ourselves and make a point to make self-care a priority. Put your phone in another room, turn up the tunes and have a dance party with your kids. You’ll be amazed at what a stress reliever that is! Read a good book. Organize your closet. Try out a new recipe or bake something yummy.
Rather than cower in the corner, we can continue to advocate and be a voice for the voiceless in our community to educate and inform the rest of the population about what it means to be immune compromised by connecting over social media, Facetime, Marco Polo, emailing and texting.
Here are some helpful resources to check out:
Crohn’s and Colitis Foundation
Coronavirus and IBD Reporting Registry
International Organization for the Study of Inflammatory Bowel Disease
Coronavirus Resource and Planning for IBD Patients (Blog written by IBD advocate Jessica Caron)
Coronavirus Resources for People with IBD (Blog/Podcast created by IBD Advocate Amber Tresca)
USA Today article: The best thing everyday Americans can do to fight coronavirus? #StayHome, save lives
8 thoughts on “Real talk from an immune compromised 30-something during the COVID-19 pandemic”
thank You for sharing and for putting into perspective the thoughts that those of us who live with crohns feel daily, now more than ever!
So glad this article resonated with you, thanks for reading!
Thank you for posting the latest available info. What is up with the lack of data? Covid-19 has been around quite awhile and still no data comparing general population infected and number of biologic treated patients infected. And, no data comparing outcomes of general population infected to infected patients being treated with biologics. Not even any news indicating if this is even being studied.
Thank you for sharing your story, it will help all of us suffering with IBD get through this.
Thank you so much my family have been down playing the serious implacations of my illness. I have made them read this I need to be safe thank you
I’m a nurse. I’m on stelara injections and have been pulled out of all nursing duties for at least 12 weeks. This upsets me so much. Im unable to help the vulnerable as I am vulnerable myself. I’ve trained so hard to help people and now I’m unable to do this in these uncertain times. I’m healthier than ever on the outside but immune system would probably kill me if I contacted this virus. Gutted and very unhappy about the situation. Although I know its safe guarding me, my colleagues need to fight this awful virus without me. Xxx
Thank you for sharing this, i worry about you everyday sweetheart, but i know you will do whatever it takes to stay healthy if possible, 🙏🙏🙏 for my girl and everybody right now love you Grandma❤❤