Halloween Happenings and IBD: Advice from GI’s and parents of pediatrics

Halloween is extra scary this year for all the wrong reasons. It’s especially challenging for children with IBD who are immunocompromised. This week on Lights, Camera, Crohn’s I share input and advice from several gastroenterologists about everything from trick-or-treating to flu season, along with the game plan four IBD families have in place for the holiday. Much like anything with this pandemic, we’re trying to do the best we can to live, while also staying safe.

As an IBD mom myself, I’m still conflicted about how best to celebrate Halloween with my kids this year. We have their costumes, and the house is decorated festively, but I’m extremely hesitant to allow my 3.5-year-old son to get candy from strangers in the middle of a pandemic. Our game plan is to hang out with my sister-in-law’s family as we do every year. I’ve been inspired by how fellow IBD families are creatively adapting and making adjustments to celebrate. I think you will be, too.

Nicole’s daughter Addy is 15 and has Crohn’s disease. She’s on Humira. Nicole said her family already had a little “pow wow” to discuss Halloween and how it was going to be this year. They’ve decided to celebrate over the span of two days by doing the following:

  • Making Halloween Gingerbread houses
  • Decorating Halloween Cookies
  • Having a glow in the dark scavenger hunt (The lights in the house will be out, the kids will have glow sticks/flashlights and they will have to use clues to find their bags of Halloween décor. With the bags of décor, each child will create a mini haunted house in their bedroom and go “trick or treating” to the different bedrooms and experience their siblings’ haunted house.
  • On Halloween night Nicole is going to make a Halloween-themed dinner
  • The family will watch Blair Witch Project

Nicole says being immunocompromised through COVID has been incredibly challenging for her daughter. She says they are trying to balance everything so that Addy doesn’t fully resent her disease.

“She sees that her friends are hanging out together, not social distancing, and not getting sick. We have had many moments filled with tears and frustration and we are doing the best we can to try and offer social interactions in the safest ways. But, she is a teen…and the efforts are hardly enough. Halloween this year is something my kids are all excited about, but it’s the day-to-day stuff that is most challenging through the pandemic.”

Ebony’s 14-year-old son, Jamar, is on Remicade infusions to manage his Crohn’s disease. Jamar was diagnosed with IBD when he was nine. He’s now a freshman in high school and attending school daily in-person for half a day with the hopes of making the basketball team.

“Even though Jamar is attending school, we decided as a family that we are not going to do anything for Halloween this year. We also plan to celebrate the holidays at home, to keep on the safe side. Since he was diagnosed with IBD and expressed sadness that he didn’t understand why he had to have this illness, I’ve explained to him that we’ll get through this together and that I’ll always support him—and that hasn’t changed through this pandemic,” said Ebony.

Paulina’s nine-year-old son, Grayson, also has Crohn’s. He’s on Pentasa, Entocort, and Omeprazole to manage it. She says her family plans to dress up in costumes as usual. Grayson is going to be Bowser from Super Mario Brothers. They have tickets for a drive through Halloween event at the community center by their home in California. Paulina says even though they have to stay in the car this year, Grayson and his sister are still excited to see all the decorations and participate in the scavenger hunt.

“We also plan on faux trick or treating, where we still go out and walk around our neighborhood and enjoy spotting cool decorations, BUT I will bring a bag of goodies and little prizes. For every few houses we walk by, they’ll get a surprise goodie put into their bag. Grayson will be able to go through his “loot” once we’re back home. I’m sure we’ll watch Nightmare Before Christmas (it’s a family favorite). Halloween falls on a Saturday and on a full moon…how could we possibly miss the nightly walk?”

Paulina says Grayson often feels frustrated when the topic of “being immunocompromised” comes up, but that he understands they are being overly cautious for his own health and that of others.

Cindy’s 10-year-old daughter, Jean, has Crohn’s disease and is on weekly Humira injections. She says Jean is in that interesting phase of childhood where she still kind of wants to go trick-or-treating, but also feels like she’s outgrowing it or too cool for that. This year, Jean is going to attend a small outdoor get-together on Halloween night with four classmates. It’s important to note—Jean has been attending 5th grade—in-person, five days a week since August.

“The kids will make s’mores and pizza and watch a spooky kid movie on an outdoor screen. Because she and her friends are in the same classroom “pod” and she spends more waking hours with these classmates than she does in our own home, we are accepting of her celebrating with them.”

Cindy says Jean’s friends and their families have been extremely accommodating to her immunocompromised status throughout the pandemic.

“When she has visited their homes or on limited occasions shared a carpool, these families have been careful to pursue a combination of exclusive outdoor time, mask-wearing, windows down on car rides, pre-packaged or restaurant carry-out snacks and meals, and having freshly cleaned bathrooms dedicated for guests’ use. Other parents proactively talk through risk mitigation and I couldn’t appreciate them more for their thoughtfulness. Immunocompromised or not, we all share similar concerns during COVID.”

Cindy went on to say she thinks Jean will trick-or-treat with her five-year-old brother at a few of their next door neighbors’ houses. They live in Indianapolis and trick-or-treating is “not recommended” by the county health department there, but she expects many of her neighbors will still be handing out candy.

“I also intend to hand out candy from our driveway, so long as trick or treaters or their parents are wearing face masks. This follows our family’s general approach on life during COVID: we are more concerned about “shared air” than we are about surfaces. We believe (and science indicates) surface infection can be largely addressed through handwashing. Because trick or treating can occur in outdoor spaces, we feel somewhat comfortable with that – balanced with the fact that while we are extremely concerned about COVID and have taken all precautions since March – we strive for an ounce of normalcy. There are enough parts of Jean’s life that are not typical due to living with Crohn’s Disease – whenever we can control any part of her life feeling “normal” we make every effort to do so. This was the case before COVID and will remain so afterward.”

Cindy says she reminds her daughter they are doing everything they can to protect her health, while also doing their best to ensure Jean can pursue all the parts of her life that bring her joy. It’s not an easy tightrope to walk, and as an adult with IBD, my hat truly goes off to parents trying to navigate these unforeseen times for their children.

What Gastroenterologists are recommending for Halloween and beyond

Dr Miguel Regueiro, M.D., Chair, Department of Gastroenterology, Hepatology, and Nutrition, at the Cleveland Clinic says he thinks it’s important for people to “live” and be with family and friends. He has a few tips and tricks (or treats!). (His joke, I can’t take credit!)

“For outside events or walking the neighborhood, this is probably the safest as we are learning that open air events are the least likely for transmission of COVID. At the same time, I would still practice wearing masks, social distancing, and practicing good handwashing. Avoid personal contact, shaking hands, hugging, etc.”

For those distributing candy, Dr. Regueiro says it would be prudent to wear gloves (nitrile gloves or similar) to avoid directly touching the candy. Out of abundance of caution, he said it would be reasonable to also wear gloves to unwrap the candy.

“Regarding trick or treating in malls or confined spaces, this would be less optimal than open air. Masks, social distancing, and hand hygiene is a must. Parties or gatherings in houses should follow the guidance of local health advice. Some parts of the country may have a much lower rate of COVID. Overall, though, I would avoid close gatherings in enclosed spaces, which means avoiding these parties, especially if immunocompromised.”

Dr. Regueiro wants to mention that the IBD Secure Registry is finding that IBD patients on immunosuppressive agents/biologics are NOT at increased risk of contracting COVID. He says while this news can be comforting, it may also be that those with IBD on these types of medications have been extra cautious.

“Everyone should get the flu shot. Getting influenza may mimic symptoms of COVID, and influenza is also a very serious virus. We think getting influenza and COVID could be even more dangerous. Getting plenty of sleep, staying well hydrated, eating healthy, and exercising are also important for the immune system and health. Don’t let yourself get run down.”

Dr. Anil Balani, M.D., Director, Inflammatory Bowel Disease Program for Capital Health Center for Digestive Health in New Jersey does not recommend indoor Halloween parties either, even if kids and parents are wearing masks (whether it’s part of the costume or a regular mask).

“With indoor settings it is hard to control the ventilation settings which could potentially increase the risk of airborne transmission, and furthermore many kids may find it difficult to breath indoors with a mask on.”

Dr. Balani says trick or treating, if it’s limited to outside, is probably ok. Although kids should wear masks when doing so.

“Children can trick or treat with their parents or siblings instead of a group of large friends, unless they are with a small group of friends that are in their “pods,” or groups of friends whose parents have been very careful with all COVID related precautions the entire time. Parents of immune compromised kids can also pick up the treats for the kids.”

Along with maintaining proper handwashing and social distancing precautions, Dr. Balani advises everyone to get the flu shot, unless there are medical contradictions. He recommends taking a healthy dose of vitamins including Vitamin C and zinc and continue to stay on top of all your IBD medical care to keep your disease managed and under control the best you can.

“The SECURE-IBD registry has shown us that people who are in the midst of an IBD flare are at high risk for complications from COVID should they contract the virus. On the other hand, if one is in remission, they are likely to have a better outcome from the virus, regardless of which IBD medical therapy they are on.”

When it comes to celebrating Halloween with his own family Dr. Balani and his wife have a few tricks up their sleeves. Instead of typical door to door trick or treating, they plan to set up an outdoor movie night with Halloween-themed movies, have an outdoor candy/treat hung similar to an Easter egg hunt with family and/or a close knit group of friends, host an outdoor pumpkin carving party, and have a backyard costume/glow dance party.

And don’t feel like you need to throw out your kids’ Halloween candy! Studies suggest that the SARS-COV2 virus may not be infectious on surfaces for too long. If there are doubts or concerns, Dr. Balani recommends leaving the candy out for a few days to allow any virus particles to die. Parents can also open the wrappers for their kids.

Dr. Maria Oliva-Hemker, M.D., Director, Division of Pediatric Gastroenterology, Hepatology, and Nutrition at Johns Hopkins suggests for families to look for other creative ways of celebrating Halloween this year, regardless of whether a child has IBD or not.

She recommends:

  • Virtual costume parties
  • Halloween movie or craft night
  • Making special Halloween-themed treats at home
  • Outdoor costume parades where physical distancing is possible
  • Checking to see if the local zoo or other outdoor venues in the area are sponsoring a safe, community event, following social distance guidelines.

“Those who hand out treats on Halloween will hopefully wear face coverings and model safe behaviors. If you are trick or treating, consider going to a smaller number of homes compared to past years,” said Dr. Oliva-Hemker.

Prior to making Halloween plans, Dr. Oliva-Hemker says families should be aware of the levels of COVID cases in their communities, as well as where their family members are coming from.

“For example, if they are coming in, or coming from a hot zone, they may want to consider holding a virtual event or be absolutely sure that they follow known guidelines for safety (masks, handwashing, physical distancing).”

She also says she can’t stress enough that this virus can be controlled in our society—other countries have been able to get a handle on things by people following public health guidelines.

“The virus does not know your political, religious or other affiliation—as a physician my hope is that our country pays more attention to what reputable scientists and public health experts are telling us. Taking care of this virus will also get the country back on track economically.”

Handling Halloween When You’re an Immunocompromised Parent

Mom (and dad!) guilt throughout this pandemic has reared its ugly head a few times especially if you live with a chronic illness and are immunocompromised. The last thing I want is for my kids to miss out on fun and experiences because of my health condition.

Dr. Harry Thomas, M.D., Austin Gastroenterology, says, “For parents with IBD, taking children trick-or-treating outdoors – while maintaining social distance, wearing face coverings, using hand sanitizer, and avoiding large gatherings – is, in my opinion, a reasonable option, provided they are not on steroids. However, I would recommend avoiding indoor gatherings, especially without masks, given the rising case numbers in many areas now.”

Along with receiving the flu shot, Dr. Thomas recommends IBD parents to talk with their IBD provider about the two pneumococcal (pneumonia) vaccines, Pneumovax and Prevnar 13.

Navigating the upcoming holiday season in November and December

Halloween is just the tip of the iceberg when it comes to the holiday season. There’s no doubt this will be an extremely hard time for us all.

“This is normally a time to celebrate with friends and family. But with the COVID pandemic, unfortunately things cannot be the same. This will be especially difficult for those of us living in the cooler climates where the tendency is to go indoors. For any potential indoor gatherings, it would be ideal to limit the number of people to allow safe social distancing. I would encourage families that are planning on staying together multiple days to consider getting tested for COVID before getting together,” said Dr. Balani. 

Why this public bathroom triggers me: Tactics for coping with the mental health aspect of IBD

I paid for my groceries and casually pushed my cart full of food through the automatic door when I saw it. The bathroom where I experienced one of my scariest and most painful moments. The bathroom I had to run into after pulling over on my way home from work because I was in such debilitating pain, I couldn’t handle sitting upright in my car to make it the extra five minutes home. The bathroom where I lost all feeling in my arms and legs and where my fingers locked into painful contortions. I couldn’t even hold my phone to call my boyfriend (now husband) to tell him we needed to go to the hospital. The bathroom where I unknowingly happened to call my mom after accidentally hitting “Recent Calls” with my elbow. All she heard on the other line when she answered was me screaming. She didn’t know if I was getting raped, she didn’t know what the hell was going on and she was in a different state. God was watching out for me because she was able to call Bobby and let him know I needed help and I needed help fast.

He rushed to the grocery store and whisked me out of the bathroom and straight to the hospital where I found out I had a bowel obstruction.

I’ve been going to this same grocery store for nearly seven years. It’s been nearly six years since that dramatic experience occurred. But even now, five years into remission, I always go out the other doors because seeing that bathroom is a trigger. A trigger to one of my lowest points in my patient journey with Crohn’s disease. A trigger that caused my IBD to act up right in that moment this past week.

I was forced to go out of the grocery store that way as part of COVID-19 safety procedures to keep all incoming traffic through one set of doors and all outgoing traffic to another.

Coping with psychological triggers

When those of us in the IBD community hear the word “trigger”, food usually comes to mind. We casually say “oh that’s a trigger food for me”, but we often don’t pay much attention to the physical triggers in our lives that can exacerbate our symptoms—such as locations like that grocery store bathroom, relationships with certain friends and family members, the pressure of being enough and doing enough in comparison to our peers, the list goes on.

I interviewed Dr. Tiffany Taft, PsyD, MIS, a Research Assistant Professor at Northwestern University Feinberg School of Medicine, and a fellow IBD warrior to get some clarity on this subject and to learn more about what steps we can make right now to protect our mental health and prepare for the unknown.

NH: As chronic illness patients–how can we best navigate triggers that instigate a stress response? (Other than avoidance)

Dr. Taft: “While avoidance feels like the safest option when it comes to situations that trigger our stress response, it simply kicks the can down the road in terms of the effects these situations have on our bodies. People living with chronic illness may collect multiple situations that trigger the stress response – doctor’s offices, hospitals, certain tests or treatments, making avoidance very risky if it means not managing the illness and staying healthy.

Try the “Exposure Hierarchy” exercise: Dr. Taft recommends making a list of activities or situations that are stressful, ranking them from the least stressful to the most stressful and picking 10 things. Rate those 10 things from 10 to 100 (100 being the worst). After making the list, she has patients start with number 10 and practice that task several times over the course of a week.

Before that, though, she teaches relaxation strategies such as deep breathing and grounding to help when the anxiety goes up. She says, “With repeated exposures to the feared situations and working through the anxiety, each time we do activity 10 again, it will feel easier and confidence grows. Once the patient is ready, they repeat with 20, 30, etc. until we get to the dreaded 100 which will actually feel less scary because of all the other work we did before.”

**NOTE** If you feel you have symptoms of Post-Traumatic Stress Disorder (PTSD) which include vivid nightmares, flashbacks, and feeling on high alert most of the time, you should seek treatment with a trauma therapist. The good news is research on treatments for PTSD show they are just as effective when delivered via tele-medicine.

NH: Can you explain (in layman’s terms) what goes on when we’re “triggered”?

Dr. Taft: “Triggered is setting off our body’s fight-flight-freeze response, and results in a cascade of physical sensations and emotions. The most common ones are muscle tension, sweating, shallow breathing, and heart racing. Unfortunately, this response can also trigger our guts to start acting up because of the brain-gut connection. It’s a completely normal process but when you have IBD it can trigger symptoms. Your thoughts may be all over the place and littered with “what if’s” and “I can’ts”. Your mind may revisit the worst aspects of past experiences or come up with even more catastrophic possibilities in the future.”

NH: As people with IBD–I know many of us are nervous about flaring and needing to be hospitalized all alone during this pandemic, while being at greater risk for getting COVID. Do you have any advice on how to cope/mentally deal with that worry/concern?

Dr. Taft: “Facing a flare and hospitalization was stressful in the “before times” so facing this during COVID19 is an extra level of stress. While we have video chat, it does not replace the comfort of physical closeness and touch we would get from supports who could be in the hospital with us. The good news is hospitals have figured out COVID quite well and the odds of contracting it while hospitalized for IBD are lower than they were at the start of the pandemic.”

If you’re facing hospitalization, think about your resilience in these circumstances. There were probably times you felt like you couldn’t handle it, or it was never going to end or get better, but here you are today reading these words. You made it through. It may not have been pretty, it was probably incredibly hard. Anxiety has a great ability to negate our memories of how much we’ve navigated in the past.

Feeling anxious? Do this: Write down the ways you coped before, what worked and what maybe didn’t. Evaluate your thoughts about being hospitalized. Are they accurate? Are they helpful? What are some alternatives that could help you feel less anxious? If that doesn’t work, sit with the anxiety, and try some deep breathing to calm your nervous system. The sensations will likely pass and then you can retry evaluating your thinking when you aren’t feeling so keyed up.

NH: What advice do you have for people during these already complicated and challenging times when it comes to managing mental health?

Dr. Taft: “This is truly a unique time in that we are all in this COVID19 boat together. We all came into the pandemic with our own life challenges, and those probably haven’t gone away and even may have been made worse. We’re coping with a lot of information, new rules every other day, grim statistics, and people bickering over who’s right or wrong. I’ve told every patient I see to turn off the news. Get out of the comments on social media when people are arguing the same points over and over.”

Steps you can take in your day-to-day: Dr. Taft advises not to spend more than 15 minutes a day on the news, so you can stay informed but not get into the weeds. Take social media breaks, especially if your feed is full of the same tired arguments. Focus your attention on meaningful activities that align with your values. Those are what will bring you some stress relief. And those are unique to you, so no list on the internet of how to cope with COVID is going to solve everything. Sometimes these lists make us feel worse because we’re not doing most of the recommendations. Be as kind to yourself as you would be to your best friend or a beloved family member. Nobody has it figured out right now even though some people like to say they do.

Caregiving During COVID-19: How IBD has helped one couple navigate the unknown

Rebecca Kaplan was only 20 years old when she met Dan, the love of her life. It was move in day her junior year of college and as she recalls “this skinny guy knocked on my apartment door to ask for toilet paper”. Her family laughed it off – because who knocks on a random person’s door asking for toilet paper – little did they know how that chance encounter would change the course of both their lives. This week, Rebecca explains how her role of caregiver has evolved over the course of a decade and how it’s helped her cope with the pandemic.

Dan and I began dating four months after that initial toilet paper introduction. Two months later, he was diagnosed with Crohn’s disease, right while my mom was starting chemotherapy for Stage 4 Non-Hodgkin’s Lymphoma. As someone who has been plagued with crippling anxiety her whole life, you would have thought I would fold under the stress of two of the most important people in my life receiving life-altering diagnoses at the same time. But I didn’t– in fact, my anxiety motivated me to embrace the role of caregiver.

Dan’s first hospitalization and the colonoscopy that went wrong

We had been married less than a year, living 90 minutes away from our families and our full support system. RK 5His disease had gone unmonitored for years and his new doctor was performing a colonoscopy to see just how bad his IBD had gotten. We were unaware that he had developed a stricture that was so severe that when she pushed the scope through, it nicked the wall of his intestines, causing a perforation and bacteria to get into his bloodstream. Within 45 minutes of waking up from the procedure, he had spiked a 104-degree fever and kept telling me and the nurses he thought he was dying. I was TERRIFIED. But I also found myself motivated by the fear and the anxiety I felt.

Instead of going into a full-blown panic attack, I went into caregiver mode. I knew I needed to be Dan’s voice because he could not speak up for what he needed. It was my job to demand the best care he could get, advocate for his needs, and focus just on him.

While taking care of Dan in the hospital required most of my time and attention, I did notice that I could only do it to the best of my ability if I were also taking care of myself. We lived 45 minutes away from the hospital with a new puppy and no one to take care of him. So, while I wanted to spend 24/7 with him while he was inpatient, I knew that I couldn’t do it for my own sanity. So, I made sure I went home multiple times a day and created a separation between myself and the hospital so I could decompress, eat (SO IMPORTANT), and sleep (ALSO IMPORTANT). Being able to do that meant that I was able to be at the top of my game when he needed me the most. RK 3

It’s been almost 10 years since the series of hospitalizations that started with Dan’s perforation and ended with him having a bowel resection to remove the stricture. And in those 10 years, I’m so thankful that Dan’s health has improved greatly. He’s gained nearly 50 pounds, works full time, works out, plays softball with his dad and brother, and deals with me.

Coping with the COVID-19 Pandemic

With his health stable now, the biggest challenge we’ve been facing the past few months is coping during the COVID-19 pandemic. I have been coping with the pandemic much better than Dan. I jokingly say that I’ve been training for quarantine my whole life, since my obsessive-compulsive disorder has always had me washing my hands, avoiding sick people, and wanting to stay home more than going out. However, Dan does not do well with change – whether that be moving to a new apartment, being diagnosed with a chronic illness, starting a new job, or having life turned upside down by a pandemic. Going from working full-time in an office to being trapped at home, isolating to stay healthy, has been hard for him. His regular life and hobbies have been stripped away from him, and not being able to leave the house and go places has left him stir crazy and agitated. RK 2

Because of this, I’ve put my caregiver hat back on in a different way. I’m not caring for his active disease; rather I’m helping him cope with change and the accompanying stress. I encourage him to do things outside as much as possible, whether that’s taking the dogs on a walk, kicking the soccer ball in the backyard, or going on a hike. I also try and help him see the bigger picture – we’re staying home so that he and our high-risk relatives stay healthy. And I remind him that this is not forever – it will get better and we will get back to normal at some point.

Rebecca’s Top Three Tactics for Caregiving

  1. Make sure you are taking time for yourself – that means eating, sleeping, and doing things to relax and take a break from being a caregiver. This is so important to help you be fully present for your loved one.
  2. Don’t be afraid to ask for help. When Dan had his surgery, our house was a mess and I wasn’t prepared to come home from the hospital with him. So, my mom and sister went to our apartment one night and cleaned/straightened it up for us so I wouldn’t have to do it after spending all day at the hospital.
  3. Find your tribe who will support you as the caregiver. It’s so important to build your own support system separate from your loved one’s support system. Being a caregiver is hard and making sure you have people you can talk to and rely on is so important for your mental health.

 

Four IBD Physicians Talk COVID: What You Need to Know

Since the words “quarantine”, “self-distancing”, and “COVID-19” became a regular part of our vocabulary three months ago, there have been many fears, and a lot of gray areas for everyone, especially chronic illness patients on immunosuppressive therapies. I had a chance to connect with well-respected and prominent physician voices in the IBD community to get to the bottom of what we need to be doing right now, and how to best handle the days and months ahead.

One of the most common questions—who is at most risk in the IBD population for getting COVID-19? You may be surprised at the findings and discourse.

“We have been reassured that with the exception of steroids, patients with IBD are not at increased risk for bad outcomes with COVID. The risks are similar to the rest of the population,” explained Dr. David Rubin, MD, Professor and Chief of GI, The University of Chicago Medicine. “Older age, co-morbid conditions like obesity, diabetes or other medical problems, and smoking cigarettes put patients at increased risk.” COVIDarticle

Every study and case series has demonstrated NO increased risk for infection, COVID, or bad outcomes with biological therapies. This includes the work of the international registry (COVIDIBD.org and now published in Gastroenterology), the mixed immune patients of all kinds reported from NYU in the New England Journal of Medicine, and other series from Italy and China.

“We have good data now that IBD patients, even those on immunosuppressive therapies are not at increased risk of COVID. However, getting sick with COVID might mean holding off IBD meds, which could potentially trigger a flare,” said Dr. Aline Charabaty, MD, Associate Professor of Medicine, Clinical Director of the GI Division, Director of the Center for IBD, John Hopkins School of Medicine at Sibley Memorial Hospital in Washington D.C.

Don’t let your guard down

Dr. Charabaty advises everyone to continue to exercise common sense and be cautious for the upcoming months, otherwise we are at a risk of a second wave of COVID-19.

“Follow responsible physical distancing: avoid unnecessary travel, work from home if possible, and minimize outings in crowded places. Continue to wear a mask, wash hands/use disinfectant, in other words continue to follow COVID-19 precautions when out, or if you have to go to work.  The risk of exposure depends on the incidence of COVID-19 in an area, but also feeling overconfident in an area of low incidence can lead to unnecessary exposure,” she added. coronavirus-4937226_1280

Dr. Peter Higgins, MD, PhD, M.Sc., Director of IBD program, University of Michigan, recommends patients on steroids continue to stay home and avoid outside contact, but for patients not on steroids, the outdoors with a mask, away from crowds, can be therapeutic.

“The hard part is knowing when there will be crowds of people, and avoiding dense gatherings,” Dr. Higgins said. “Having open space and good airflow seems to be protective. Being in close quarters, especially with folks who are breathing hard (exercise, singing) seems to increase risk.”

Small Gatherings with friends and family (less than 10 people)

Dr Charabaty recommends the following:

  • Before gathering with family, make sure no one has had recent symptoms or exposure to someone who has tested positive.
  • When indoors with family staying 6 feet apart isn’t always feasible, wash your hands frequently and wear a mask if sitting close.
  • The idea is to share fun family moments, but remain cautious and protect yourself and loved ones.

“I would limit the number for gathering based on how much space you are entertaining in. Certainly, the more people there are, the more limited the physical space per individual there is to share,” said Dr. Neilanjan Nandi, MD, FACP, Associate Professor of Clinical Medicine, Penn Presbyterian Medical Center. “With that in mind, I would ask people to not invite more people than they can physically safely distance themselves from. If we’re too close, we spread the virus. If we have distance, then we decrease the odds.”

Luckily, the summer months are perfect for outdoor festivities and gatherings with friends and family. Being indoors in close quarters is taking a calculated risk. It’s hard to know if everyone at a gathering is uninfected without a lot more testing or strict quarantine from every visitor beforehand.

Outdoor patio seating, should you, or shouldn’t you?

The waters get a bit murky here. The consensus is to get takeout and find a picnic spot far from others or to eat at home.

Dr. Charabaty says she tells patients and her family to avoid or limit outdoor dining. She explains, “It’s difficult for people handling and serving food to follow hand washing and social distancing when service is busy. I see many restaurant workers wearing gloves, and touching many different services, which gives a false sense of security. It’s not the cooked food that is an issue, it’s more the handling of the plates, glasses, and silverware.” Outdoor dining

Be mindful of how far tables are spaced out and call ahead to see what measures the restaurant is taking before you go.

Health pundits have pointed out that bathrooms are a point of contact for any infection to be transmitted. This is something to keep in mind, especially for those of us with IBD, who may need to frequent the bathroom more than most. “Hand dryers may aerosolize, and toilet flushes can create microscopic fecal plumes,” says Dr. Nandi. “Notably, coronavirus is present in stool at magnitudes lower than respiratory droplets, so their impact on developing clinically relevant disease is unknown. It is restaurant goers who are coughing and sneezing and then using the bathroom that may cause more concern. If you need to use the bathroom while out, use paper towels and close the toilet lid when flushing.”

Navigating everything from medical appointments to hair cuts

“I understand people wanting to go to hair salon; if you need to , and no one in your house can cut or color your hair, call ahead to make an appointment to minimize wait and exposure, and pick a day and time that are not busy,” said Dr. Charabaty. “If your visit to the physician is routine, you can discuss with your physician how soon you need to be seen. If it’s a sick appointment or a follow-up that you already needed to delay, then again, wear your mask, remove it only when needed; and wash your hands often.”

Before You Go: Ask medical offices and salons what precautions they are taking:

  • Does the office call patients ahead of time to check if they have symptoms suspicious of COVID?
  • What measures are being taken in waiting rooms?
  • Is everyone required to wear a mask?
  • Ideally you want to see lots of free, no-questions-asked testing in your local community/county to monitor COVID rates
  • A low level of new cases (less than 3 per week) in your local county
  • Lots of serious precautions taken, including possibly outdoor haircuts (common during 1918 flu pandemic), fans to increase airflow, and glove, gown, mask, and face shields on stylist/dentist/eye doctor to protect them as well as you. Recent exposures in Missouri reinforce this.

The future of telehealth

“I expect telehealth will continue- our estimate is that about 30-40% of routine visits may be virtual which is great, but this needs some careful reflection,” explained Dr. Rubin. “We need some thoughts and plans for better home monitoring and some additional guardrails to know when in person visits are needed and when providers or patients should request them. We don’t want to make mistakes and let patients slip through the cracks of virtual visits without physical examinations and adequate disease and therapy monitoring.”

The return to work

Ways to minimize exposure in the workplace and the questions to ask:

  • What measures is your employer taking to ensure responsible physical distancing?
  • Are employees required to wear a mask?
  • If working outside the home, leave clothes and shoes in the garage or the basement. Strip down and scrub down right when you get home.
  • If spouse has symptoms or if they’ve traveled to a high-risk area, they should quarantine.
  • Ask your boss if you can continue to work from home or increase the frequency of doing so to limit your exposure. Provide a note from your GI to Human Resources that explains why you are immunocompromised.
  • Monitor yourself or your spouse closely for fever, symptoms (including both respiratory and GI symptoms) and if possible, pulse oximetry to measure blood oxygen levels (a decrease is worrisome).

Dr. Higgins explains there are “high and low” risks work environments. High risk involves a crowded open space office full of cubicles, working in an ER/ICU/healthcare, assembly line/meatpacking plant, air travel, frequent contact with large numbers of people (bus driver). Lower risk jobs involve outdoor work, low density office spaces with closed doors/good airflow, and solo car travel. photo-1531493731235-b5c309dca387

“When it comes to spouse related travel, I would have them again speak with their employer about the necessity and yield of the trip. Much of what we can do currently can be done via teleconferencing,” said Dr. Nandi. “While the personal touch is always preferred, today’s times do necessitate that we be conservative and protect ourselves and our families. If travel is necessary, the spouse testing upon return is a good idea. If not possible, then conservatively a self-quarantine would be recommended. Of course, this presents marked strain on the functionality of any family. this emphasizes the need for greater and better testing capability.”

Remain cautious, don’t get too comfortable

Even with states re-opening, it’s on us to remain cautious and minimize unnecessary exposure while being able to provide for our families. We all have cabin fever going on, but we are all responsible to prevent a second wave of COVID by avoiding being complaisant.

“While it is reassuring to know that in general our patients with IBD do as well as the general population (or possibly better), it is prudent to continue our caution until we get to an R0 of <1.0 (meaning one infected person infects less than one additional person) by ongoing efforts to flatten the curve and/or a vaccine,” says Dr. Rubin. coronavirus-line-art-5019475_1280

This too shall pass

“It is sad and frustrating that this pandemic has occurred in our society, but I view it as a unique opportunity to get better connected: first with one’s self ; second with our immediate family and friends and third, with our natural environment,” said Dr. Nandi. “In my opinion, our Western society’s luxuries can often prevent us from enjoying the simplest pleasures in life. Thus, I take this time as an opportunity to spend quality time with my family, read more books, try new recipes, and workout more regularly. Because, I know in time, this too shall pass – and the opportunity that it presents will disappear as well.”

 

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.

sophiawalk15months

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.

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.

 

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.

E06A0940

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.