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.

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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.

Revolutionizing the patient experience through crowdsourcing: Use your journey to make a difference

This blog post is sponsored. All thoughts and opinions are my own.

Coping with chronic illness is complicated. When it comes to IBD, no two people have the same experience, but there are often many parallels and overlaps. Crowdsourcing is now being used to understand how to best treat chronic conditions, such as Crohn’s disease and ulcerative colitis. By empowering patients from all around the world to share information on a large scale and leveraging the power of advanced artificial intelligence to analyze and organize that data, StuffThatWorks is revolutionizing how medical research is done.

Chances are you’ve heard of the popular app, Waze, which allows people to build maps and share data with other drivers to bypass traffic. It’s an app my husband and I use all the time! One of the members of the Waze founding team, Yael Elish, started thinking about how crowdsourcing could be used to understand how to best treat chronic conditions. Yael’s daughter started to struggle with a chronic health condition and wasn’t responding well to treatment. Her illness was taking a heavy toll on the entire family. Yael Elish and daughters_1

“It seems like almost everyone dealing with an ongoing medical condition dedicates endless hours researching, speaking with others, and scanning groups in search of something that can help us feel, and live better. We want to know if there are treatments that will work better, if our side effects are unusual, or if diet or lifestyle changes could make a difference. We look for people like ourselves and seek to learn what works (and doesn’t) for them,” said Elish, Founder, CEO, StuffThatWorks.

When it comes to managing chronic illness, it’s much like trying to find the needle in the haystack—the one treatment that will work best for us. The power lies with patients. We are the people who have tried various treatments and know what’s worked best. Crowdsourcing puts patients in the driver seat. Large amounts of information can be gathered from millions of people worldwide.

“I want people to feel empowered – and validated. To realize that their point of view and experience is not only legitimate but is extremely valuable to helping the world understand illness and treatment effectiveness,” said Elish. “I want StuffThatWorks to be a place where patients can share their collective voice and be heard by the medical community.  Where patients themselves are able to impact and drive the research that is being done about their condition and play an active role in finding solutions that will help everyone with their condition feel better.”

StuffThatWorks Currently Serves 85 Condition Communities

As of now, more than 125,000 people are contributing members within 85 condition communities. Over 6.5 million points of data have been shared! One of the biggest communities (fibromyalgia) has over 15,000 members. PCOS has 12,000.

StuffThatWorks is looking to grow the IBD community.

Right now, there are three communities, IBD in general, ulcerative colitis, and Crohn’s. Of these three, Crohn’s is the biggest with 729 members who have reported their experience with 270 treatments. The ulcerative colitis community has 409 members and 155 treatments in the database.

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Take the UC survey: https://stuff.co/s/5sSltbnK

On average, Crohn’s community members report they have tried 6.2 different treatments, and 37% describe their Crohn’s as “severe.” By sharing treatment experiences, our community members can use data to help one another figure out which treatments are best for different subgroups of people.

“The power of this database is that it can reduce the years of searching for the right treatment or combination of treatments. Our platform lets people explore how different treatments work effectively together, and we’re able to analyze everything from surgery and medications to alternative treatments, changes in diet, stress reduction and more,” said Elish.

COVID-19 response

StuffThatWorks is in a unique and powerful place to help advance the research on COVID and understand how it impacts people with different chronic conditions. Who is more at risk? Does the virus present differently in people with certain conditions? Do certain treatments work better/worse for them?

“We are currently prioritizing COVID-19 research by inviting everyone with a chronic condition to contribute to the research by answering questions about their experiences related to the coronavirus pandemic, even if they do not have the virus. We are also inviting all current StuffThatWorks members to fill out the coronavirus questionnaire and contribute to this new research,” said Elish. “We’ve also set up a dedicated coronavirus discussion forum, where doctors are answering questions and providing important information about the latest research.”

In a time when many people are feeling anxious and alone—discussion boards are helping to bridge the communication gap and allow for people to connect with one another. StuffThatWorks community members are seeking support about decisions: Should I cancel my doctor’s appointment? How much am I at risk if I am taking immunosuppressants? How can I help my partner understand my anxiety about coronavirus?

The world is suddenly realizing that crowdsourcing is the holy grail of how to gather health care data on a large scale. The real-time nature of it is particularly important, and the ability to get data from such a vast number of diverse sources.

Crowdsourcing research is limitless: The hope for the IBD community

You’ve heard the adage “strength in numbers”. Once large numbers of people with IBD sign up and become members on this free platform, everyone from the newly diagnosed to veteran patients can find something new and continue to evolve and learn about their patient journey.

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Take the Crohn’s survey: https://stuff.co/s/bzqQR5xP

“I want people with IBD to feel empowered – that this community is THEIRS, not OURS – and that they can determine what it’s used for and how it can be most helpful. They can add new research questions, post personal discussions or experiences and ask others specifically what works and doesn’t for them,” said Elish.

As members of the IBD family, by joining this platform we immediately become part of a supportive community where we can talk with others just like us, either collectively, or one on one, about how we manage and handle the day-to-day with our IBD.

Driving Research through Patient Reported Outcomes

Patients like you and me have power to influence the research direction of the medical world. We are all a piece of the puzzle and play a critical role in helping with the future development of medications and treatments, and hopefully one day a cure.

So much medical research is done using small groups and funding for large-scale research is extremely hard to come by. The opportunities are endless with crowdsourcing, in terms of the research that can be collected and the solutions we as patients can only provide. LightsCameraCrohns-Blogpost_image

Whether it’s shortening the amount of time it takes to get an IBD diagnosis or helping people find optimal treatments quicker, by sharing our experiences we gain invaluable insight into improving our quality of life and managing our chronic illness. It’s truly a win-win for everyone involved.

Check out StuffThatWorks and sign up for free as a member. Take part in building a knowledge base aimed at figuring out which treatments work best. Your story. Your experience. It’s powerful and it all matters.

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.

 

IBD mom offers up 5 tips for productively working from home

Twenty years ago, Katy Love, was diagnosed with Crohn’s Disease. She was a sophomore in college. She could barely make it out of bed some days, due to the enormous amount of pain and overwhelming fatigue. After her diagnosis and subsequent surgeries, she wondered if she’d ever be able to have a “real job” – like many of us in the chronic illness community, she worried about how she would be able to work and manage her illness. Katy didn’t allow her diagnosis to prevent her from following her personal or professional dreams. Now as an IBD mom, running her own PR business from home, in the middle of a pandemic, she has some advice to share about being successful in the face of adversity. Boulder_Headshots_043

After graduating from college, I took a job at an interactive advertising agency. My dream job. Then, reality set in. I needed to ask for accommodations for my Crohn’s disease– I had to ask for a flexible schedule – one where I could work from home when needed.

I was elated when the agency agreed. Since then, I’ve been blessed to work with several teams (for other companies) that understood my illness and trusted me to work remotely when needed. As someone who has worked from home quite often during my career, due to a chronic illness, I’ve learned a few helpful best practices that have helped save me time… and my sanity.

Create a realistic routine and office hours. If you know you can’t start working until 9 a.m., due to family obligations, don’t start your work time until 9 a.m. Then, plan accordingly for your end time each day. Be sure to share your office hours with your family and colleagues. It’s important for everyone to know when you’re working. Also be patient with your new schedule. As with all new things, it will take some time to become a true routine. This is all new territory – working from home is a normal occurrence for me, however, having all my children and my spouse at home, while trying to work from home, is a new challenge.

Get Dressed. Every single day. I know this may sound silly, as you haven’t left the house in weeks. But I find this extremely important. It sets the tone for the day. When you look the part, you’re much more likely to feel the part. Plus, with all the Zoom calls, you want to look like you aren’t wearing yesterday’s PJs for the weekly team meeting.

Establish a defined workspace. You need an area where you know – this is my desk, my work zone. Your family members know that when you are there, you are working. Working from bed sounds delightful…I love my bed. However, it’s easy to be distracted if you’re not in a specific workspace. IMG_0846Also, surround your workspace with all that you may need during the day. Computer, chargers, phone, etc. I like to also put candles or fresh flowers near my workspace – they smell great and elevate my mood. With spring finally here, go outside and pick a few flowers and put them in a mason jar. Anything that makes you smile and motivates you.

Communication is KEY. I learned this early on in my career. Just because you’re not in physical sight of your team, and your employer, you want them to know you’re ON and working. The worst thing you can do is go dark. If they don’t see you, hear from you, it’s easy to assume you aren’t taking working from home seriously. So, over-communicate with your team during this time.

Take breaks throughout the day. When you’re setting up your new routine/office hours, schedule breaks into the day. Personally, I like to work out in the mornings. So, finding 30 minutes to hop on my bike sets my day up for success. In the afternoon, take a walk outside, or bake with your kids. Katy_Vince_Family_138It’s extremely important to incorporate self-care into your routine right now. There’s so much uncertainty and doom/gloom in the news. Make sure you are taking time to appreciate yourself, your team, and your family, while keeping your health as a top a priority.

 

Growing through the grief of COVID-19: Love, A mom with daughters recently diagnosed with Crohn’s

Life was much different for Michelle Manasseh and her family of Orange County, California, one year ago. For starters, her daughters had not been diagnosed with IBD and we weren’t living in the middle of a global pandemic. This week, Michelle shares what it’s like being a parent of two kids newly diagnosed with Crohn’s Disease, while trying to navigate everything that is COVID-19.

It hasn’t even been nine months since Eve (age 11) and Ruthie (age 9), BOTH of our kids, were diagnosed with Crohn’s, and BOOM—COVID-19 happens! So yeah, let’s pile pandemic on top of chronic illness, on top of school being cancelled indefinitely, on top of no contact with any. other. human. soul. for. weeks. on. end. What do we call this? Grief. 5EEF5B29-5EB9-407F-9154-F708F04B5F38

There’s no other name for it. Our whole culture is grieving. One important lesson that the kids’ diagnosis has taught me is how to grieve. And I mean how to really grieve. Parents of kids with IBD know a thing or two about grief. We went through it when our kid was diagnosed, when the next kid was diagnosed, when the flare hit, when the medication changed, when the game plan failed. It comes in waves and it comes out of nowhere.

Our culture has taught us to numb and distract – don’t do it! Don’t miss the chance to be refined by the pandemic fire. Yeah, it’s uncomfortable, but we need to let ourselves feel emotions so we can come through this with true peace and wisdom. If we avoid the fire or pretend it isn’t there, we are doing ourselves – and our kids – a disservice. We need to teach them that grieving is normal and ok. It’s ok to cry. It’s ok to be angry. It’s ok to be sad. We need to remind them that we are all feeling the same things and we will get through it together.

We can’t fix this

Something I realized pretty quickly after my girls were diagnosed with Crohn’s Disease is that I couldn’t fix it. There wasn’t a single special diet, mix of herbs, supplements, exercise, tincture, oil, weed, seed, handstand, or flip that could fix it. And this was a painful truth to learn. As a parent, our natural instinct is to fix things for our kids. We’re stocked with band aids, kisses, and unsolicited advice.

Crohn’s is beyond my control. This has been very humbling for me. Likewise, COVID-19 is humbling our culture. I think it’s revealing a huge blind spot. With the rise of self-proclaimed health experts and medical misinformation circulating broadly across our connected culture, people have believed that they can fix all their own medical problems. Now that blindness is obvious. Just as IBD is not a stomach ache, COVID-19 is not a common cold. We can’t fix it. People are feeling helpless and turning to doctors in desperation. I hope a silver lining is that it invigorates the medical profession and brings to our culture a profound respect for doctors, nurses, and all healthcare workers.

Uncertainty illuminates

For the first time in several decades, the whole world is living under a bleak cloud of uncertainty because of COVID-19. A similar dark cloud rolled over our home last summer when Eve and Ruthie were diagnosed with Crohn’s. I learned that with great uncertainty comes deep discomfort. It forces us down tunnels of self-examination, to take stock of our lives and our purpose. It illuminates our utter dependence on God.

Crisis also has a way of illuminating our deep-seated motivations. Who are we seeing on TV and across social media lately? People with the purest motivations. Doctors. Actors reading sonnets and bedtime stories. Public officials creating guidelines to protect us. Musicians playing across balconies. This is a great teaching moment for our kids. Become a financial advisor to help people. Be a writer to reveal truth. An artist to bring joy. A doctor to bring healing. A musician to bring beauty. An actor to tell stories that need to be told.

What can we do?

Parents – we are navigating a global pandemic with immunosuppressed kids with chronic illness. Let’s be honest, we have massive fears. I had to bring Eve in for an MRI two weeks ago. In my mind, the machine was basically a plastic tube crawling with yellow spindly germs. Never mind a mask – why didn’t someone plastic wrap my child?!? IMG_8604

We are dealing with a heck of a lot, and none of us is perfect. I’m quite certain that my kids will never again ask to be home schooled. The main skill we’ve mastered so far is how to do a Zoom conference while driving to infusions! On Friday night I sipped wine while the girls smeared Nutella on crackers after eating only half of their dinner. Two days later I inadvertently put Eve’s daily Miralax in Ruthie’s water bottle. (Oh gosh, is she flaring!?!) I, for one, would relish a shirt that says “WORK IN PROGRESS” printed in bold neon letters.

No, we aren’t perfect, but we do have something to give. We have a unique perspective and experience. We can be a voice. More importantly, we can be an ear—for our kids and for others. Call a friend and listen. Tell people the good things you’re thinking about them. Tell them you love them. And very importantly, take the time to thank your kids’ teachers, doctors, and nurses for all they have done and continue to do—they are real life heroes.

 

Seeing the beauty through the struggle: IBD mom welcomes third child amidst COVID-19 pandemic

Welcoming a baby into the world brings so many emotions to the surface. For IBD mom, Suzy Burnett, of Madison, Wisconsin, it’s been a rollercoaster. She had her third baby, Guy Richard, February 29th. IMG_0146Right before COVID-19 started wreaking havoc in the States. Before Guy was born, Suzy’s biggest fear was a postpartum flare. After the birth of her second oldest daughter, Alice, she had the worst Crohn’s flare of her life and was hospitalized.

Now, as her and her family face the COVID-19 pandemic, she has a new set of concerns. Will Guy be able to stay healthy until his immune system matures a bit? How will her daughters adjust to the new addition? Will she be able to stay well despite being immunocompromised? COVID-19 added a whole new slew of uphill battles that she or anyone else for that matter hasn’t been prepared to deal with. This week Suzy shares her perspective as an IBD mom, doing all she can to protect herself and her family in the face of this viral war.

As anyone who has ever had a baby, you know those first two weeks, involve several doctor appointments. Guy still had high bilirubin levels when we brought him home, so this meant we needed to make extra trips to his pediatrician. Sounds easy, right? There was so much involved this time around. Babies don’t have that immunity built up yet, so we had to use a special entrance, and go straight to our room to avoid any contact with the public. I couldn’t help but glance at the waiting room and see all the long faces adorned with facial masks. It was swimming with sick kiddos. I felt incredibly lucky at that moment as we escaped the chesty coughs, and furniture that had been saturated in illness.IMG_0147

One week went by, and things quickly changed to Zoom and FaceTime appointments. Not only did the baby’s appointments change…but mine did as well. Those of us with Crohn’s disease can’t always get by with a virtual chat about our symptoms. But here we are.

Navigating health issues brought on by my IBD

Many people with IBD develop extra-intestinal manifestations. IMG_0144Unfortunately, when I was put on prednisone last summer, I developed extremely high eye pressures. I was diagnosed as “Glaucoma suspect” at 40 years old, meaning I have some risk of the disease, but no proven damage (yet), so my eyes are monitored often.

I’m also dealing with an external hemorrhoid, thanks to excessive diarrhea, along with an anal fissure, all while caring for three children—one being a newborn.

For those of you who don’t know, an anal fissure is a small tear in the thin, moist tissue (mucosa) that lines the anus. I’m treating the fissure with topical lidocaine and a suppository three times per day. I’ve had my fair share of pain, but this ranks right up there with my non-sedated sigmoidoscopy and childbirth. It feels like broken glass, or razor blades back there. There’s a chance this has progressed to a fistula, and I may require surgery in the weeks to come.

Normally, I would be seen right away, but due to the current COVID-19 crisis, it’s been several phone calls back and forth with the nurses triaging my symptoms. I’m confident the hemorrhoid will go away, but if the fissure doesn’t, I might be facing surgery, and right now a trip to the hospital could be life threatening.

Seeing the beauty through the struggle

Amidst this horrific event that is crippling our world, there is an unexpected beauty that has surfaced. Our wonderful party of five has become closer than close. Yes, there are times when we all go a bit loony, but we’re embracing this time together. My kids are my world, my everything. I need to be the best version of myself, and a huge part of that now and forever is not letting my IBD win. Even when my disease has a strong hold on me, I never let my kids see the struggle.

If you’re reading this and you’re unsure about whether you’ll be able to handle your IBD and motherhood, I’m here to tell you it’s possible. IMG_0148As a woman and a mom of three who has battled Crohn’s since 2008, I believe if it’s your dream to have children, or a family, you should most definitely pursue that. Consult with your GI and OB doctors prior to getting pregnant, and make sure you’re in remission. Pregnancy can be challenging, but if you’re also flaring, it’s that much harder.

As we all experience the change in our day-to-day lives during the COVID-19 pandemic, whether you have IBD or not, there has been a return to simplicity. A back to basics mentality that is exponentially refreshing. Take a walk outside and breathe in and out. Right now, we’re forced to take our time, dig deep, and focus on our inner beings. Much like the experience of dealing with the diagnosis of IBD, it’s a time to peel back those layers and re-discover YOU.

Follow Suzy’s journey by checking out her blog: Crohnie Mommy 

 

 

The race for a cure: How clinical trials are taking on COVID-19

Clinical trials are the guiding light when it comes to discovering life-saving medical breakthroughs. Now, more than ever, they are critical for ensuring treatments and vaccines to combat COVID-19 are safe and effective. IMG-9966 Citruslabs is currently offering research organizations their patient recruitment service and software free of charge for COVID-19 trials. Their goal is to make an impact by accelerating the research needed to find a vaccine and treatment for this condition sooner rather than later.

“Without clinical trials, there is no innovation in medicine. Since there is currently no cure or vaccination for COVID-19, it is essential to test potential treatment methods as soon as possible and to speed up the process so that we can slow this virus down and all move on with our lives. We know that patient recruitment is a big issue in the clinical trial industry. We want researchers to do what they do best: conduct research, see patients, and let others, like Citruslabs, worry about patient recruitment,” said Susanne Mitschke, CEO and Co-founder, Citruslabs.

Susanne

Susanne Mitschke, CEO & Co-fonder, Citruslabs

Right now, clinical trials are looking for people infected with coronavirus, as well as healthy individuals. Healthy people are the key group needed for vaccination trials. Currently, there are around 12 different potential treatment methods being tested—finding a cure for people who are already infected with COVID-19 and finding a vaccination that prevents people from getting the virus in the first place.

As you can imagine, aside from COVID-19 trials, the clinical trial world has come to a screeching halt. Patients are scared to come to screenings or continue with their study visits because of COVID-19.

The trials to treat infected COVID-19 patients are targeting the most severe cases and mostly treat ICU patients. Citruslabs isn’t working on those trials, as it’s hard for them to identify patients who are in the ICU. Their expertise lies more so with clinical trials for vaccines.

The race to discover a safe COVID-19 vaccine

Even though clinical trials for COVID-19 are accelerated right now, to ensure a vaccine works and is safe, still takes time. This is why it’s expected a vaccine for COVID-19 won’t be approved until at least March 2021. stay-home-save-lives-4983843_1280

To give you an idea of just how accelerated the race to get a COVID-19 vaccine is, on average clinical trials for vaccines take 10 years! First, research must be done “in vitro”, then, usually the vaccine is tested on animals and the last step is human clinical trials (three phases for FDA approval). Most companies then continue with a Phase 4 trial to collect “real-world evidence” and test the drug with tens of thousands of patients.

“The good news when it comes to COVID-19 is that researchers have investigated other Coronaviruses: SARS (from 2002) and MERS (from 2012). The current Coronavirus has 80-90% similarity to the SARS virus from 2002, which is also why doctors call the virus SARS-COV-2. When it comes to COVID-19, some trials focus on live but weakened virus forms. These have drawbacks because they can still make the host (the human being) sick! Newer approaches are looking at the genetic code of the virus, which seems in light of COVID-19, a safer approach,” explained Susanne.       corona-4983590_1920

COVID-19 Symptom Tracker

Citruslabs is collaborating with other research organizations to find the right patients for clinical trials. One of those companies is Lazarus, which created a symptom tracker to identify those who are likely to have COVID-19. Their software advises patients if they should stay at home (self-monitoring), visit their primary care physician, or even go straight to the hospital. You can find a link to their tracker here.

How to get involved and help

So, what can we do as the general population right now—other than STAY HOME to minimize the spread? Taking part in clinical trials can really save lives, now more than ever. If you are interested in taking part in a clinical trial to find a vaccine for COVID-19, head over to https://bit.ly/2wMS3Ja and fill in your information. A research team will be in touch with you about suitable trials in your area.

The backstory on Citruslabs

Founded in 2015—Citruslabs is the link between patients and research organizations. Their sole focus is to find the right candidates for the right clinical trials. Currently, 86% of clinical trials don’t meet their patient targets. Citruslabs is working tirelessly to change that. When clinical trials can’t be completed it puts researchers in limbo because they are not able to collect enough data to the safety and efficacy of new treatments. As a result, many drugs never make it to market.

As of today, Citruslabs has worked with more than 200 clinical studies and reached more than 3 million patients. But their work is just getting started. Over 50% of Americans are not aware of clinical trials. CitrusLabs

“We want to change this by providing transparent information about the importance of clinical trials, their benefits, but also their risks so that individuals can make an informed decision if they want to join a clinical trial or not,” said Susanne.

In the months to come, stay tuned to Lights, Camera, Crohn’s for more information about how Citruslabs is working to drive research related to Inflammatory Bowel Disease. For now, though—the focus remains on COVID-19 and doing all they can to rise to the challenge and make a difference.

Click here to learn more about how Citruslabs is fighting the fight against COVID-19.

This article was sponsored by Citruslabs. All thoughts and opinions shared are my own.

My five year old has Crohn’s and was tested for COVID-19: A Mother’s story

UPDATE: Since this story was shared on March 30th, Jadyn’s COVID-19 test came back. After two weeks of waiting, the test came back positive.

Imagine your 14-month-old baby being diagnosed with Crohn’s disease. That was the reality for Anna and Jon Richt of Georgia. Fast forward a few years and their daughter, Jadyn, is now five years old and thriving with IBD. This past week though, the Richt family had quite a scare. E06A1215Jadyn woke up with a fever and a slight cough. Given the craziness of the times we live in right now, they immediately called the COVID-19 hotline. Once the person on the other line heard about Jadyn’s health history and the fact she is immunocompromised, they agreed, Jadyn needed to be seen. In urgent care, Jadyn was tested for the flu, strep throat, and COVID-19. The Richt’s were told they would have a test result in five days, it’s been more than a week now, and still no result.

Prior to all the discussion on social distancing and sheltering in place, Anna and Joe had traveled domestically. Family members who had been staying in their home had recently traveled internationally. Anna says, “The strep test came back positive, which gave us a sense of relief. But it didn’t cancel the possibility of COVID-19. We have been watching her closely, ready to sound the alarm at any sign of health deterioration. Thankfully, she is feeling much better and I believe she is bouncing back to her normal self.”

What’s it like to raise a daughter with IBD from such a young age? Jadyn has a G-tube, and Anna is passionate about spreading awareness about feeding tubes to educate others. E06A1193I’ll allow Anna to take you back to the beginning, so you can have a better grasp of their ongoing journey and how it’s brought them to where they are today.

Seeing blood when my baby was six months old

I started seeing blood in Jadyn’s stool when she was around six weeks old and immediately called her pediatrician. He chalked it up to a couple of things, mostly related to breastfeeding issues and didn’t seem too concerned. When she was eight months old, my husband’s job moved us far away from family and her symptoms worsened. Her new pediatrician was concerned about her weight loss and sent us to the hospital for further testing.

A colonoscopy showed lesions all throughout her GI tract. Crohn’s disease was mentioned but the gastroenterologist was hesitant to diagnose it because of Jadyn’s young age. I did exactly what they say not to do and Googled Crohn’s Disease. The symptoms were spot on: “Bloody stools, persistent diarrhea, vomiting, loss of appetite, weight loss.” I’m not sure I’ve ever told anyone this, but deep down, I knew.

Dealing with the diagnosis

The diagnosis eventually came when Jadyn was 14 months old. fullsizeoutput_38f9The first couple years were nothing short of a dog fight. I remember sitting in my sister’s living room after an appointment when all of the sudden the doctor’s number popped up on my phone. She was calling to say that Jadyn’s lab results didn’t look good and we needed to head to the hospital right away.

My sister and I sat there in disbelief and cried. I remember her saying through her tears, “I feel like you are under attack.” We were. But we fought back. There have been countless doctors’ appointments, feeding tubes, eating therapies, procedures, you name it. She has been a trooper through it all and I am so happy to report that her current medication is working. Thankfully, she is a normal 5-year-old for the most part, which I don’t take for granted.

What has the journey been like for me as her mother?

It’s by far the hardest thing I’ve ever faced in my life. At the beginning I assumed it was something we could easily get under control and move on. I now know it is a marathon race, not a sprint. Watching my child suffer, and not being able to fix the problem despite my best effort made me feel like I was failing her. IMG_6044

It’s been lonely at times. Don’t get me wrong, we have the most amazing family and friends. They have supported us unconditionally every step of the way. But because she was diagnosed so young, we’ve never met another child her age with Crohn’s. I couldn’t call one of my mom friends and ask, “What anti-TNF drug worked for your child?” or “How are you potty training your two-year-old who is flaring?” Instead, we’ve pioneered this head-on, and I’ve completely relied on my faith to get me through. People often say how strong I am, but honestly, I believe it’s God’s strength in me that they see. When I look back on these past five years, I know without a doubt He has carried us. I can honestly say I am proud of the mother I have become due to this disease. I am brave and empathetic. I’ve developed grit and survive on grace.

What I want to say to parents of children with IBD

Take care of yourself. I always think of the airplane safety guide. Secure your oxygen mask before helping others. You cannot fully care for your child if you don’t take care of yourself first. Some days that may mean a 30-minute workout and drinking plenty of water. Other days it’s meeting with a counselor to address the emotional toll the disease has taken.

Let others help. They really want to. Use that time to step away and catch your breath.

See your child for who they are. Your child is more than their disease. They are uniquely designed for a specific purpose.

You can do this. I firmly believe that you were handpicked by God to be your child’s mother.  Continue to advocate and cheer them on. Take it one day at a time.

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Jadyn and her little sister

“And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6

You can follow Anna by checking out her blog: Grit to Grace

Anna’s Instagram: @grit.to.grace

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

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

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