Tag: IBD and COVID-19

Navigating new mask guidelines: What the IBD community needs to know

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With mask mandates ending for most states across the country and the CDC once again changing its guidance about masking, it’s a cause for concern for many who are immunocompromised or considered higher risk for Covid-19. As an immunocompromised mom of three kids under age 5, I feel a bit uneasy about the shift in measures, even though I had Covid-19 in January. I contacted my GI this week to ask her opinion on the mask mandates lifting and navigating this time as an IBD mom. She didn’t hesitate for a second and told me to keep masking—not only for myself but because of my kids. She herself hasn’t stopped masking in public and doesn’t plan to anytime soon.

I polled my followers on Twitter and Instagram by asking: “Do you still wear a mask in public, indoor spaces?” Nearly 500 people responded. On Instagram, 69% responded “yes” to still wearing masks and 31% responded “no”. On Twitter, 88% responded “yes” and 12% responded “no”.

This led me to dig a bit deeper and hear what several top gastroenterologists who specialize in inflammatory bowel disease had to say on this controversial and politicized issue.

Dr. Aline Charabaty, MD, Assistant Clinical Director of the GI Division at Johns Hopkins School of Medicine, and the Director of the Inflammatory Bowel Diseases Center at Johns Hopkins-Sibley Memorial Hospital, offered several fantastic analogies for the IBD community. The one that really hit home to me was talking about family planning and remission in Crohn’s and ulcerative colitis. If you are flaring and want to start a family, the rule of thumb is to be off steroids for at least six months to ensure disease activity is calm. We JUST got through the rampant spike in omicron cases last month. In her opinion, going maskless this soon after that highly contagious variant is premature. She believes we need to wait longer to make sure we are out of the woods and that conditions need to be more stable for a longer period of time. Until then, she recommends those who are more susceptible in the IBD community continue to mask as an extra safety net.

“We are not out of the pandemic. Sure, there are less deaths and fewer severe cases, but people are still getting sick. We saw this happen when we let our guard down and delta hit…then omicron. When you are driving, you wear a seatbelt, follow the speed limit, try not to tailgate, and follow the rules of the road. These are all precautions to drive safely to your destination and avoid an accident. You don’t just do one thing to prevent a car accident. With Covid, we got the vaccines, we’re wearing masks, we’re limiting exposure to large crowds, and measuring risk versus benefit for each of our decisions. It’s not a pick and choose situation of how to keep ourselves and others out of harm’s way.”

Dr. Charabaty went on to say why get sick with something when we really don’t know the long-term effects. We already see Covid can cause a higher risk of depression, heart disease, and autoimmune issues.

“Wearing a mask is such a simple measure. If it adds a benefit, I don’t see why people are saying no to this. This virus can really change your body. Why not add another layer of protection to prevent illness? There are no downsides to wearing a mask, so why not wear it? When you are out and about there are people with weakened immune systems, cancer patients, organ transplant recipients, people on multiple IBD medications…why put these people at risk of infection? The more Covid is transmitted, the higher the risk of mutation, which will cause yet another spike. Each variant has been a result of people letting their guard down to soon with their decision making.”

Dr. Neilanjan Nandi, MD, FACP, Associate Professor of Clinical Medicine, Gastroenterology, Penn Medicine, agrees that while case numbers going down is reassuring, that we are not out of the woods yet. To him, a mask is a sign of empathy for others.

“It’s not about us…whether it’s a caregiver or a family member or friend, this shouldn’t be looked at as an encroachment on our freedom, but rather about showing respect for those around us. The best thing we can do is mask up. Wearing a mask in public, indoor spaces is a smart move because you don’t know the immunization status or exposures of people you don’t know. If you are planning to see family or friends and know people’s vaccination status or if they’ve recently had Covid, you might feel more comfortable not wearing a mask.”

Pre-pandemic photo-May 2019 with Dr. Nandi at Digestive Disease Week in San Diego.

Dr. Nandi reiterated the fact that we’ve learned over the course of the last two years that most of our IBD medications don’t cause an increased risk and may even be protective. While this is reassuring, if you are on 20 mg of prednisone or higher, he highly recommends you mask up as you are more susceptible to illness.

Dr. Uma Mahadevan, MD, Professor of Medicine, and Director of the UCSF Colitis and Crohn’s Disease Center, says every region of the country is different and that your location should be taken into account.

“In the Bay Area we have a high vaccination rate and a low hospitalization rate. You also have to consider the patient’s personal risk and risk aversion.”

Here’s what Dr. Mahadevan tells her patients.

  1. Follow local guidelines for masking
  1. If you are vaccinated and boosted and are in a low-risk area with no mask mandate, its ok to not mask, particularly outdoors. Indoors in crowded shopping areas, etc., I would still consider masking. However, again, low risk patient in a low-risk region, it’s ok not to mask.
  2. For high-risk patients on steroids, double biologics, severely active disease, etc. I still recommend masking.

Dr. Miguel Regueiro, MD, Chair, Digestive Disease and Surgery Institute, Chair, Department of Gastroenterology, Hepatology & Nutrition, Cleveland Clinic, is hopeful we’re headed to what we see with influenza. While of course flu can still be serious and deadly, with enough people vaccinated and exposed to Covid, we can have herd immunity.

“We’re all learning as we go and there’s a lot of “grey” with nothing very “black or white.”  For now, I am recommending IBD patients continue to mask. For those who are immunocompromised, wear a mask in indoor spaces, especially crowded spaces such as airports. In outdoor spaces, it is less clear, but masks are probably a good idea when social distancing is not possible.”

Pre-pandemic photo-May 2019 with Dr. Regueiro at Digestive Disease Week in San Diego

Dr. Peter Higgins, MD, Ph.D., M.Sc., Director of the IBD Program at the University of Michigan, says if a person is unvaccinated, masks are a must. He encourages you to talk with your doctor about Evusheld, a monoclonal antibody against Covid-19 for immunocompromised people and those who cannot be vaccinated for medical reasons.

“If the county you live in is below 10 cases per 100,000 people (CDC is saying 200/100,000 for the non-immunosuppressed), then you can consider not wearing a mask. But admittedly, this is an arbitrary number and 200 cases for every 100,000 people seems too high for the immunocompromised population. Especially if you are around kids, the elderly, or those who have not been able to be vaccinated, showing solidarity and wearing a mask is highly recommended.”

He explained that eating indoors with good ventilation is OK, but that is it hard to prove unless you have a CO2 monitor that can show a consistent CO2 ppm (parts per million) < 650. To give you an idea, Las Vegas casinos have good ventilation systems in place to keep restaurants free of smoke and those measure between 400-450 ppm. Dr. Higgins still recommends people do a rapid test within 12 hours of gathering with friends and family. He adds that as we learn more about long Covid and new variants guidance may once again shift.

Dr. Harry J. Thomas, MD,Austin Gastroenterology in Texas, also recommends patient who are immunocompromised (especially those on anti-TNF’s, prednisone, and other immunosuppressants) to mask up.

“I empathize with people who are worried about being judged by others and I recommend that they share — if they feel comfortable — that they (or their family member) have a chronic disease that places them at higher risk. I do feel that abandoning masks right now is premature, especially here in Texas as well as in other parts of the country with lower vaccination rates. I’m not sure if/when there will be another spike, but we still have about 2,000 COVID deaths each day which is really tragic and indicates that the pandemic is far from over.

My personal take

Personally, my husband and I still wear masks in public, indoor spaces. Our children who are in preschool are one of the few who are still wearing masks at their school. While I understand each person has the right to make their own personal decision for themselves and for their families, it’s disheartening and honestly disappointing to see the lack of care for others who are not fortunate to have the luxury of being healthy. I can’t tell you when I’ll feel safe enough to go into a grocery store or the mall without a mask on, it’s going to take time and assurance from my care team that I’m not making a rash decision that could put myself, my family, or even strangers at risk. It’s complicated. I get it.

My daughter at preschool this week. Still masked up.

When you’ve lived with a chronic illness like Crohn’s disease for nearly 17 years and been on immunosuppressive drugs ever since, your perspective shifts. You quickly realize you are not invincible. You recognize and empathize with those who have health struggles and depend on the greater good to make sound decisions. It’s a small act of kindness for the sake of health and safety. Talk with your care team about navigating this new normal. Don’t base your judgements on social media, the news, or your political beliefs. This is an ever-evolving discussion. It’s been a long two years. We’re all tired. But that doesn’t mean apathy is the answer. You may not care, but you are making a statement to those who are vulnerable when you go maskless indoors.

It’s ok to be unsure. It’s normal not to want to be judged or feel your kids will be outcasts if they’re the only ones at school masking. It’s understandable to feel a bit lost about what is best. But if a mask makes you feel comfortable, safer, healthier, you do you. Know that the medical community and so many others stand in solidarity with you.

Rolling up sleeves for a hopeful future: Immunocompromised healthcare workers with IBD share their vaccine experiences

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Since the start of the pandemic, healthcare workers have carried the heaviest burden. Especially those who are immunocompromised while working in harm’s way. This week on Lights, Camera, Crohn’s you’ll hear from three healthcare workers with IBD who are immunocompromised and have received their first vaccine. It’s my hope that by hearing from these warriors firsthand that you’ll gain a sense of comfort, understanding, and perspective while also understanding the importance of debunking medical misinformation. Our IBD community is delicate and requires more expertise than simply listening to a family member or friend who “read something on the internet” or someone who has a cousin with Crohn’s (or now COVID).

Wearing several hats—IBD Mom and Relief Charge RN in COVID Unit

When Shermel Edwards-Maddox of Houston was diagnosed with Crohn’s disease in 2007 at age 24, little did she know that she’d one day lead the charge in a medical unit in the thick of a pandemic, while having two kids and a husband at home, while being on a biologic.

“It has been both physically, mentally, and emotionally draining. I imagine that every healthcare worker has been afraid however being immunocompromised has added an extra layer of fear. The emotional and mental exhaustion comes from the constant worry of “what if today is the day I catch COVID”? Every time I step onto the nursing unit, I’m aware that I could contract the virus. It’s very reminiscent of IBD and the worry of whether a flare is starting.”

Like many other healthcare workers (and the general population for that matter!), she says the roll out of the vaccine provided her with a sense of relief, but also an understanding about the importance of educating the public about the importance of getting vaccinated. As a nurse, she has a solid understanding of how clinical trials work and knows that more than 70,000 people received the vaccine between the Pfizer and Moderna trials. She was especially excited to receive the vaccine after it was found to be 95% effective. Shermel feels blessed to receive “0.3ml of hope” in a syringe and says many in her shoes feel like they just received their “second wind” after months of being beyond exhausted.

“It was quite emotional. I shed several tears in the days leading up to the vaccine. Those tears were in amazement of how grateful I am to be getting a vaccine that could spare me from this horrible virus that takes the lives of so many. When it came time for getting the vaccine, I felt pure excitement!”

Shermel’s only side effect she experienced was a sore arm, which is expected with any type of vaccine.

The COVID vaccine allows Shermel to not only protect herself but her husband, children, patients, and the community. It makes her feel hopeful to know her daughter will get to see her kindergarten teacher’s face without a mask and that her son will be able to attend his school graduation, free of social distancing. 

From an Ostomy Reversal in March to working as a clinical researcher

Caroline Perry also happens to live in Houston and after battling Crohn’s since the age of eight in 2000, she had an elective ostomy reversal surgery March 4th just as the pandemic was unfolding in the States. She takes Entyvio AND Stelara and says that even though she’s on two biologics, her physician had explained to her that both drugs have a relatively good safety profile. While she wasn’t overly nervous about contracting the virus more than the next person, she has been nervous about how her body would react to it.

As a clinical researcher, her boss, happens to be her gastroenterologist. Having her care team readily available and working alongside people she knows and trusts on both a personal and professional level has helped her cope through the pandemic immensely.

Prior to receiving the vaccine in December (2020), Caroline admits she had some initial concerns and brought them up to her doctor, which is what she recommends everyone does.

“Many people are getting all their information from the internet or by word of mouth and are neglecting to listen to our experts—some even mistrusting them. My doctor gave me lots of evidence on why she believes the vaccine is safe and debunked a lot of my fears, which I found out were fairly common questions or misconceptions regarding the vaccine. I got the information I needed to make an informed decision, and once I had all the information, I was no longer worried about getting the vaccine! I am much more concerned about getting COVID than any potential side effect of its vaccine.”

Caroline says she was so excited to receive the vaccine, not only for herself, but for all the healthcare workers that were in the room with her.

“Sitting in that chair, it hit me. I was really experiencing a significant piece of history and I will never forget the feeling of palpable relief in that room. As healthcare workers, we have heard nothing but bad news for so long, and the vaccine is a beacon and glimmer of hope, at the end of a very long tunnel.”

Due to the pandemic, Caroline and her fiancé canceled their wedding for the time being, but finally feel like they can breathe a sigh of relief. Her fiancé won’t be eligible to receive the vaccine until the last round is available, so until then, she says they will continue to practice COVID precautions and keep up to date with the latest data surrounding the vaccine.

After receiving the vaccine, Caroline still received her Entyvio that afternoon! Her only side effect, like Shermel, a sore arm. As of now, she’s working on COVID research in addition to her usual IBD research. Caroline says this past week was her first time working in the COVID ICU for a new clinical trial, and she felt a lot safer thanks to having the first vaccine.

Juggling Women’s Health while being a mom of 3

Janice Eisleben, a Women’s Health Nurse Practitioner in St. Louis, was diagnosed with Crohn’s in October 2017 while pregnant with her third child. She was initially on Humira, but started Stelara a year ago. Janice happens to work at the OB office I go to, so I know her personally and have experienced her amazing care through my own pregnancies. We connected immediately once we both discovered years ago that we were IBD moms on biologics.

She recalls how scary the onset of the pandemic was, between the limited information and the looming unknown. As a patient with IBD, on a biologic, she wasn’t sure what that ultimately meant for her well-being. When she found out the vaccine was going to start being available to healthcare workers, Janice says she was elated.

“I feel like the vaccine finally offers some level of comfort to healthcare workers who have literally been giving everything they have to take care of patients. And this is not limited to nurses and doctors! The hospital cannot run without the respiratory therapists, housekeepers, and maintenance staff—these people are truly the unsung heroes of this pandemic.”

Janice said she did not have concerns or worries about the vaccine because she had been following the clinical trials from the early stages. She says the energy she felt just standing in line to receive her vaccine was something she’ll always remember and that everyone there was beyond ready to take this next step.

“It was incredibly emotional. I honestly teared up when I received the email inviting me to schedule my appointment. I was so excited that the night before I had trouble sleeping—kind of like a kiddo who can’t sleep the night before Santa comes. This vaccine means so much for us. It means that maybe sooner than later I will feel more comfortable with my kids going back to school and participating in activities. It means that we have less worry about me bringing this virus home from work to our household, and less worry about me getting a severe case of this virus.”

She says she can completely understand why someone would be skeptical of the vaccine, but she encourages everyone to avoid the “Google trap” and to please contact your physicians/care providers to discuss it further. For anyone with IBD, Janice advises you to specifically contact your gastroenterologist. If there is anyone those of us with Crohn’s and ulcerative colitis should trust, it should be our GI!

Janice’s only side effect was also a sore arm, though she does anticipate more symptoms (low grade fever, aches, fatigue) after the second dose, because this was well documented in the trials.

Helpful Resources to Educate Yourself About IBD + COVID Vaccine

About IBD: Podcast Interview with Dr. David Rubin: A Key Opinion Leader in IBD Helps Patients Understand What to Expect with Vaccination

Crohn’s and Colitis Foundation: COVID-19 Vaccines: What IBD Patients & Caregivers Need to Know

The “vulnerable” population: Here’s what special shopping hours mean to me

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Chances are by now your grocery store has instituted a designated hour each morning for the “vulnerable” population to shop. Vulnerable meaning the immunocompromised, the elderly, and the those who are pregnant. Target and Wal-Mart are on board with this too, one day a week. While in theory this is greatly appreciated, many people who are taking advantage of this option have been met with huge crowds and empty shelves.

As a 36-year-old with an invisible illness, Crohn’s disease, I was curious if I would be questioned or given dirty looks if I shopped during these hours. To the average person, I look healthy. I called two local grocery stores and my local Target to see if I would need a doctor’s note or a prescription bottle with my name upon entering the store. Everyone was extremely kind and said no questions would be asked and that it’s just an honor system. Still, as a young person I can’t help but assume I would be met with some eye rolls and attitude. I too was hopeful and a bit skeptical that the rest of the population would be honest and not try and to take advantage of the system. IMG_9020

So, after one week of isolation in my home, I strapped on one of two N95 masks my husband had lying around the house from some construction projects and a pair of surgical gloves we had on hand from when my son had Hand, Foot, and Mouth as a baby and ventured out to see just how it would be to utilize the shopping hours for the high risk. We were down to about five slices of bread and no meat, I figured shopping during this special time when the store opened would be our best chance at getting what our family needed.

Here is what surprised me

I was one of five people in the store wearing a mask. I was the only person wearing gloves. It felt like the day before Christmas when you are like a sardine walking in a slow line, aisle by aisle. The situation made me feel anxious and unsafe. I was the youngest person by far…and I’m not all that young, but it was mostly the 60+ crowd. I wasn’t questioned by employees or shoppers but feel as though my mask and gloves did the talking for me. While I was shopping, I wondered if it was more crowded than a random time of day…or if this is just how busy grocery stores are now around the clock? shopping-cart-1275480_1920

The safety of shopping around other high-risk patients

I asked Dr. Neilanjan Nandi, MD, FACP, Penn Presbyterian Medical Center about whether there was any danger in putting all the high risk people together to shop, or if he felt it was safer to go first thing in the morning before all the crowds throughout the day. He said, “It may be safer to go early in the store when there are simply less absolute number of people around to contract the illness from. It is the shear number of people that ultimately contributes to the virus’ spread. Therefore, limiting the number of individuals that we come in contact with is among our best options in both preventing our own infection and slowing its spread to others.”

Dr. Nandi went on to say regarding IBD, it is patients who are on a high dose of steroids (particularly over a daily dose of 20 mg) that are of the greatest concern right now. “While good data is unavailable, the biologic class of IBD therapeutics were specifically developed to avoid the high risk of infection that steroids confer on magnitudes far greater. I encourage all IBD patients to maintain their current therapies. If on steroids, have a discussion with your primary IBD specialist about other options and of course maintain vigilant social distancing practices.”

If you are single or don’t have a choice but to do your grocery shopping, I would recommend utilizing the special hour that’s been set aside, but if you have the option to stay home and have another family member or friend do the shopping, do that. My husband has been doing all our grocery shopping and Target runs, I simply went to gain perspective and see firsthand how it would be for a young person, with a disease that isn’t visible, during these wild times. If I had been shopping without a mask and gloves on, maybe I would have been asked what I was doing there. It’s hard to say. Overall, I’m grateful businesses are recognizing the need to do all they can to try and protect those who are at greatest risk of catching COVID-19, your efforts are appreciated.

Click here for a list of major retailers offering specific accommodations for shopping.

 

 

Real talk from an immune compromised 30-something during the COVID-19 pandemic

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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. CCFA social distance

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. Thanksgiving2019

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