My family calls me “Sergeant COVID”: Navigating life while being high-risk, as the world reopens

I’m preparing to feel like the bad guy in the months ahead. My family has already jokingly called me “Sergeant COVID”.  As an IBD mom who is immunocompromised, the decisions I make as the world starts to reopen may step on some toes. I’ve always been one to struggle with confrontation and take it upon myself to be a people-pleaser, which isn’t always a good thing. But this. This is different. I know there will be times I need to speak up and say no.

While out on a walk with my family in our neighborhood this week, we approached a house with two moms sitting side by side, a play date was going down.

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Daily walks and getting fresh air help to keep us sane!

Several kids ran around the yard. An SUV parked next to the two moms with their thermoses. I turned to my husband when I spotted them and said, “well there’s a playdate.” He laughed and said, “Are you not going to allow Reid and Sophia to see anyone for a year?”

Well, that’s a good question my friends. Who knows what these next few months will bring, and as someone who is immunocompromised from my biologic medication, that may need to be the reality if things don’t make a drastic turnaround for the better as far as number of cases and deaths.

I want to be together with my friends and family as much as the next person

I also understand the risk associated with getting together with people who have not taken social distancing and quarantine as strictly as my family has. I haven’t stayed in my house and neighborhood since March 12th and only ventured to the grocery store and for bloodwork once, to throw those efforts out the window. I haven’t cooked every meal for my family and refrained from ordering take out for nothing.

baking

Trying lots of new recipes has been a great distraction.

The moment I let my guard down before I feel comfortable, the moment I put myself or my family at risk.

As someone who’s worried about sickness from germs and flare-ups for years, I see this pandemic through a different lens than many. Anyone in the IBD community who is on immunosuppressive medication has a different perspective. I’m already anxious about having to justify my decisions to stay home as life slowly starts getting back to a new normal for everyone. But until I feel safe, we’ll be taking all the precautions.

I wonder just as much as the next person in the chronic illness community how to navigate these difficult conversations with well-meaning and otherwise “healthy” friends and family. When I hear about people getting together indoors, going for walks with people outside their nuclear family, having people over for BBQs, even being essential workers (which I know can’t be helped)—I know the date I’ll see those friends and family just gets pushed further away.

When things calm down, the first people my kids and I will see indoors, will be my parents, who have practiced strict social distancing and haven’t ventured out for anything but groceries. If they were out and about and seeing others, that wouldn’t be the case.

We all need to do what we feel comfortable with and worry less about hurting someone’s feelings or getting a little backlash for our decisions. Luckily, my husband Bobby has been extremely understanding and supportive and backs me up on how I feel. IMG-1529

The best thing we can do is over-communicate. Talk openly about life as someone who is immunocompromised and what recommendations and parameters around social distancing your care team has shared with you. By talking about what your doctor has told you, it validates your worries and fears.

It’s ok to feel disappointed and frustrated. Not everyone has been or will take social distancing and quarantining as seriously as you do. Focus on what you can control—and that is your actions and that of your families. You are doing all that you can to stay safe, and that’s what matters. I’ve had moments where I was physically shaking and so overwhelmed by emotions throughout these past few weeks—because of the actions of others. You see it on social media—the families getting together with several people for Easter, and birthdays, and Mother’s Day. People taking trips on airplanes. Social distancing block parties where people are all standing super close to one another. It’s truly mind-boggling and hard not be judgmental from my vantage point. If you need to cut down on social media or cut ties temporarily with those who you believe are acting irresponsibility, do what you need to do for your mental health and well-being.

We had originally planned to drop off my mother-in-law’s Mother’s Day gifts on the front porch and stay in our car, but my in-laws set up patio furniture on opposite sides of their large patio and we were able to hang out outside 20+ feet apart to exchange presents. It was nice to finally see one another from afar vs. through a window.

Constantly keep your finger on the pulse of research. There are so many physicians in the IBD community truthfully working around the clock to bring patients like us the latest and newest information about COVID-19 as it relates to Crohn’s and ulcerative colitis. Educate yourself on factual, research-based information. Follow top GI doctors on Twitter. Stay in touch with your care team and don’t hesitate to ask questions. Tune in for Facebook Lives and Twitter Chats from IBD Social Circle, IBD Moms, and many other great groups.

Lean on the patient community. Prior to the pandemic, life with a chronic illness already made us feel a bit like outsiders. IMG-1409Now more than ever, we’re being labeled as the “sickly”, the “disposable”, the “weak”, the list goes on. COVID-19 is not JUST about the elderly and immunocompromised, this is about everyone. As patients we have a unique perspective and understanding about the struggles we face daily and what it’s like to go through this challenging time. Connect with fellow patients online who get your reality, your emotion, and the whirlwind of going up against this invisible bogeyman. To refrain from social media, you can download awesome free apps like Gali Health and IBD Healthline, with helpful articles, community conversations, and chats by patients, for patients.

Your FOMO is nothing new. Chances are throughout your patient journey you’ve had to miss out on plans or cancel last minute. Will it be hard when the whole family or your group of friends are getting together, and you tell them you won’t be joining for the big “post-quarantine” reunion? YES. Of course. At the same time, you’ll probably feel comforted not having to worry if so and so is asymptomatic and waiting on pins and needles for two weeks to see if you’re in the clear.

I look so forward to the day when my family and I can reunite with those we love and miss dearly. I just ask that people have understanding, patience, and empathy for those like myself, who will be very fearful to return to life as we used to know it…if that will ever be. Maybe put on the kid gloves and imagine walking in our shoes before you say something that you can never take back.

Telehealth: Where Have you Been All My Life? Making the Most Out of Your Next Appointment

They say there’s a first for everything and that was the case for me with telehealth visits. Nearly 15 years into my patient journey with Crohn’s disease, and I had never had a video chat with a physician. Going into the experience felt a bit daunting, a little uncomfortable. As patients, we get so used to our routine for managing our illness, that changing the course of care can make us feel anxious. I know I’m in the majority when it comes to being new to this whole telemedicine thing. Let me tell you, I really loved it. I walked away from my computer smiling and feeling happy. Here’s why.

Connecting over video saved me time and a whole lotta energy

My commute to and from my GI office is about 35 minutes and usually involves bringing at least one of my kids with me or coordinating childcare. It was awesome to just walk into my kitchen and instantly connect with my physician. We’ve talked on the phone many times in the past when I have a question or an issue but conversing over video made a big difference. You feel much more connected and like you’re sitting in the same room.

I didn’t feel rushed

Oftentimes while in the examining room, I feel like I’m racing the clock to get all my questions asked. It can feel like I’m just one of many appointments in a row and that my physician is bouncing from room to room. There was a sense of calm and a laid-back aspect of the call that sat well with me. It felt like a 35-minute heart-to-heart that was genuine, educational, and comforting. I felt listened to and heard. We talked about everything from my Crohn’s symptoms to my next colonoscopy, and how to handle everything with the COVID-19 pandemic.

We set a game plan in place

Something I love about my GI is that she’s extremely proactive and aggressive. You ask her a question and she immediately has a confident response. I’ve been more symptomatic the past few weeks than I have been for awhile, so she ordered a fecal calprotectin test to see if there was any inflammation going on. My husband, Bobby, picked up the test from the lab and I will bring the completed test in when I get my bloodwork this week. As far as my annual colonoscopy for later this summer, she told me that we should be ok to get the scope in, as that’s an ideal window for when things are expected to calm down COVID-wise. If we waited or delayed the scope, she fears it could be a YEAR until we’re able to do one again. Telehealth-interpreters-tel-1140x500

She determined that part of the reason I may be experiencing more abdominal pain is unintentionally changing up my diet. Something so many of us are doing right now. Our family hasn’t had take-out food since March 12th. While it’s great to have a healthier diet, having less processed foods can make things more challenging on our digestive systems. She recommended I incorporate more carbs into my daily diet, drink more water from a cup vs. a straw or a bottle (as that can cause gas to build up), and even try drinking peppermint tea or having peppermint oil in the air.

Guidance for navigating the pandemic and IBD

I asked my GI about her recommendations for what to do once Stay at Home orders are lifted and how long social distancing should be in place as someone who is immunocompromised from my medication. She said I am free to go to public parks and trails (while wearing a mask) but should stay out of everything from supermarkets to shopping malls through the summer. She advised it would be best to have my husband continue to run our necessary errands while wearing a mask. She’s anticipating a second peak of the virus will happen when the colder weather approaches.

Luckily, Bobby has been able to work from home since March 18th, a benefit of corporate America. When I asked about what to do when he has to go back in the office, she said he would need to wear a mask and at the sign of any symptoms, would need to stay away from our family.

As far as flaring and needing to go to the hospital, my GI recommended keeping her in the loop and openly communicating about symptoms so we can handle as much as we can outpatient. If there is an acute issue (fever, vomiting, etc.—things that happen with an obstruction), then I should go to the hospital as I normally would.

When it comes to IBD patients being tested with an antibody test, she doesn’t foresee that happening unless we are about to go into surgery or have a procedure. Even then, she says our immune response is different than that of the rest of the population.

Recommendations to keep in mind ahead of your telehealth appointments

Come prepared. Have questions. Be open about your symptoms and don’t downplay anything. Your physician can only help you if they know what’s going on.

Familiarize yourself with the technology. I choose to do my call on the computer, much like a Zoom meeting, but through the patient program provided by my office. There was also an option to click a link in a text message and chat like you’re on FaceTime. telemed

Try to have a quiet space for your call where you can focus. Unfortunately, my husband had a work call during my appointment, but I was able to put the baby down for a nap and bribe my 3-year-old with some snacks and TV. He only interrupted a couple of times, but my physician understood and we had a good laugh about how fruit snacks work wonders to calm or distract toddlers.

Ask about billing. Telehealth appointments at my doctor’s office are billed the same as a routine appointment. Make sure your office has your insurance information ahead of time.

Listen to this About IBD podcast from one of my favorite patient advocates, Amber Tresca, and one of the top IBD docs, Dr. Nandi, about how to best prepare for telehealth appointments during the pandemic.

 

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

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

Taking on Crohn’s to Get My Life Back on Track

This post was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.

Crohn’s and Colitis Awareness Week is December 1-7. If you have Crohn’s disease or ulcerative colitis, get tips from gastroenterologist Dr. Corey Siegel, a Crohn’s disease and ulcerative colitis expert, by visiting the online Expert Advice Tool before your next trip to the doctor’s office.

The gnawing abdominal pain. The frequent trips to the bathroom. The fatigue that hit me like a ton of bricks. It all became my “normal” the first few years following my diagnosis of Crohn’s disease in July 2005. During that time, I did everything I could to put a smile on my face as I reported the news on television stations in Minnesota and Wisconsin. While I loved sharing other peoples’ stories, I never wanted my own struggles to be uncovered while I was in the spotlight.

I am one of approximately 700,000 people in the United States affected by Crohn’s. Once I left the news desk in 2014, I felt it was the perfect time for me to share my struggles and become a vocal advocate. Rather than keep my story in the shadows, now, I share my journey proudly with hopes of helping and inspiring others as an IBD patient advocate and blogger.

Crohn’s and Colitis Awareness Week (December 1-7) is a time to educate others about IBD and empower those who may be struggling with their disease. It’s a time for patients and caregivers to speak up and use their voices to show that IBD doesn’t need to hold you back from experiencing all that life has to offer. It doesn’t need to prevent you from accomplishing your dreams. It doesn’t need to isolate you from enjoying a full quality of life. That being said—it takes effort on your part to listen to your body, recognize the symptoms and manage them accordingly with your health care team.

Crohn’s disease is a chronic inflammatory bowel disease (IBD) characterized by inflammation of the gastrointestinal (GI) tract. It can affect any part of the GI tract, from the mouth to the anus, and is not contagious or caused by food. IBD is a progressive disease, which means it can get worse over time if you are not proactively managing it. It’s also an invisible illness – I look like everybody else, no matter how I’m feeling on the inside. Those with IBD often internalize their struggles and keep their pain to themselves. It’s as if an inner conversation begins with every meal or beverage, moment of stress or excitement and twinge of pain.

In July 2008, almost three years to the day following my initial diagnosis, I found myself dealing with Crohn’s symptoms spiraling out of control. I was the morning anchor for ‘Wake Up Wisconsin.’ Deep down, I knew something wasn’t right. I was headed home to Chicago to celebrate the Fourth of July with family. I ended up being hospitalized over the holiday with an abscess the size of a tennis ball in my small intestine. I watched the fireworks reflect off my hospital room window with my mom. I felt broken and exhausted by yet another setback.

My gastroenterologist entered the room and talked candidly with me about the need to change my treatment plan to minimize the progression of my Crohn’s. While it was a daunting and emotional conversation, it’s a conversation that changed my life as a young woman with Crohn’s. I had my whole future ahead of me. I knew I needed to make changes and get my life back on track.

I’m here to tell you that despite my diagnosis of Crohn’s at age 21, I was still able to accomplish it all. The first decade of my disease, I worked full-time in the television business and spent time at a public affairs firm. I fell in love with an amazing man who sees me for so much more than my disease. We got married in 2016. We have a healthy toddler and we’re expecting a baby in 2019.

Crohn’s has shaped my perspective and shown me the strength I possess within. It’s taught me to slow down and listen to my body and to appreciate the beauty of a ‘feel good’ day. My IBD journey has been one of highs and lows, smiles and tears, and everything in between. I wear my IBD diagnosis as a badge of honor because it’s something that has tested my strength and perseverance, but it hasn’t robbed me from becoming all I want to be.

If you have Crohn’s, it’s important to work with your doctor (sooner rather than later) to create a monitoring and treatment plan focused on long-term success and minimizing disease progression. Prepare for your next doctor’s visit with the help of gastroenterologist Dr. Corey Siegel and the online Expert Advice Tool.

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Disclosure: This post was sponsored by AbbVie Inc., a biopharmaceutical company, and should not be construed to constitute medical advice. Personal opinions and thoughts are my own. I am not a medical professional and am not qualified to give medical advice. Please talk with your doctor about your individual medical situation.

How living with Crohn’s inspires this medical student to make a difference

There’s never a good time to receive a diagnosis of inflammatory bowel disease. The earth shattering news tends to flip your world upside down. For 27-year-old Alyssa Alda Clements of New Jersey, her Crohn’s disease diagnosis could not have come at a worse time. Alyssa was in her first year of medical school and had recently lost three family members.

“The hardest part about my diagnosis was the time I spent in the hospital or being homebound, because it took me away from my schooling. Having to take medical leaves from my DREAM was so heart breaking. I had wanted to be a doctor since I was three. In time, I started to feel better when we got things under control and was able to go back to medical school and, knock on wood, I am still hanging in here,” Alyssa says.

Being sick never made her want to quit, if anything it made her realize how much we need doctors, especially ones who care. Alyssa says her patient perspective provides her with insight when it comes to the type of doctor she wants to be and the type of care she aspires to provide day in and day out to those who depend on her. alyssa7

“My first trip to the ER nearly killed me because the doctor didn’t believe my pain, told me it was in my head and that I was a crazy medical student, and didn’t even touch or listen to my abdomen. It turned out to be an obstruction and thankfully I listened to my gut and went to a different ER the next day,” Alyssa recalls.

Fast forward a week later, Alyssa woke up from her first colonoscopy to learn she has severe Crohn’s disease in her large intestine, small intestine and rectum. The GI spoke candidly and said her odds of ever becoming a doctor were slim, due to her health. But, Alyssa didn’t let the naysayers stop her from following her dreams.

Becoming a doctor while living with Crohn’s

As many know, working in the medical field is not for the faint of heart. alyssa6The profession entails a great deal of stress, both physically and mentally. Not only are the hours long, but you are exposed to a ton of people who are sick, while you are immunocompromised.

“I have learned so much about empathy and sympathy as a patient, the way some physicians made me feel pushed me to continue in medical school and be a better caregiver than they were to me at my worst moments. I have learned to listen to the patient because I have been ignored. I know just what being a patient feels like, how scary, uncomfortable, painful, that being sick can be, and I want to be there for others who are in that position. When I finally found my amazing care team that I have now, I became hopeful that I could be that person for someone someday,” Alyssa says.

As far as advice for fellow IBD’ers, Alyssa says be honest with yourself and what you can handle. Don’t let your disease limit you, but also know that it’s ok to be kind to your body and slow down when you need to. Alyssa says she’s modified her life so that she’s able to handle medical school and keep her well-being in mind at the same time. She relies heavily on the support of her family and boyfriend and makes self-care a part of her daily life.

Big city, bright lightsalyssa people

Alyssa was recently featured by People Magazine, that’s how her and I connected on Twitter! I saw her inspiring story and immediately wanted to share it with you. She went to New York City and was interviewed as a woman who is overcoming chronic illness. Talk about a great person to represent those of us in the thick of fighting this disease.

Her attitude is admirable, “I want to show anyone that they can be strong and resilient and still achieve their dreams after a diagnosis. I want to show young women and girls with illnesses that they are still beautiful, that their bodies might be constantly changing, but they are still themselves, they are still amazing.”

Bouncing back from difficult days

In her first year of diagnosis, Alyssa was in and out of the hospital. She endured more than 12 bowel obstructions, a PICC line, NG tube and tests galore. While at Disney World that November, Alyssa fell to the floor of her hotel room. She came to find out she had multiple abscesses and fistulas. After four weeks of total bowel rest, she had an ileocecectomy. A total of 13 inches of her intestine was removed. In her eyes, the surgery saved her life. Alyssa has been on Humira for almost five years. She says the new citrate free formula has changed her life (and I must agree!!)

“Days can be hard, filled with pain, fatigue, never ending symptoms, but always know that you are not alone. There is an army of us fighting diseases you can’t see.” You got that right, Alyssa!