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

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

Vitamin D deficiency and IBD: Why it’s important to address the issue

When you think of vitamin D, soaking up some sunlight may come to mind. But for 30-40% of people with IBD, there’s a deficiency. I’m one of those people. Despite taking a daily dose of vitamin D in pill form, I’m still well below the “normal” range. My GI recently had me go from taking 2,000 IU a day, to 50,000 IU two times month.

The role of vitamin D with disease activity and inflammation

According to Dr. David Rubin, Chief of Gastroenterology, Hepatology and Nutrition at the University of Chicago, “We know that the lower the vitamin D, the more inflammation people have. There is even a “sunlight gradient” in parts of the world where Crohn’s disease is more or less prevalent based on exposure to sunlight- suggesting that more sunlight (and more of that kind of vitamin D) may be preventive or conversely, that less sunlight may be a risk factor.” Photo by J Elizabeth Photography www.jelizabethphotos.com

While it’s unclear why vitamin D deficiency is so common in the IBD population, Dr. Rubin says, “We definitely know it’s lower in IBD folks than others who live in the same geographic areas and who are the same age. We suspect there may be an activated inflammatory pathway that is a result of the IBD OR that the deficiency is due to a mutation in the Vitamin D receptor that prevents adequate uptake.”

He went on to say it’s not so much a malabsorption issue, as some assume. Therefore, it’s important those with IBD know what their vitamin D level is, even if they feel well and are in remission.

The importance of measuring vitamin D levels 

Severe vitamin D deficiency over time can result in bone loss, delayed or impaired wound healing (and this includes the “wounds” in your bowel), depression, and fatigue. All symptoms and conditions that can occur in IBD! So, knowing your vitamin D and addressing deficiencies is very important. Vitamin D aids in calcium and phosphorus absorption, which is necessary for healthy bone turnover and growth.

“An interesting study at Digestive Disease Week a couple years ago looked at treating low vitamin D in active ulcerative colitis. Of the patients who had a response and normalized their vitamin D levels, they also had improvement in their ulcerative colitis. It was a well-done proof-of-principle study but very important and suggests that this may be a novel treatment in the future, or even be an adjuvant therapy. The key was that patients had to get their Vit D >40 ng/mL,” said Dr. Rubin. laboratory-3827736_1920

When I had my vitamin D measured this past month, I was at 22 ng/mL, despite taking daily vitamin D and being in clinical remission. As an IBD patient of nearly 15 years, I’m interested to see if shifting to the 50,000 IU capsule of Vitamin D twice a month will help put me in the “normal” range. Time will tell!

It’s recommended that IBD patients get vitamin D levels measured in their blood work at least once a year. If the number is low, then Dr. Rubin recommends repeating labs more often after supplementation has started. While sunlight can certainly increase Vitamin D, it doesn’t seem to be sufficient enough to address the deficiency in patients with IBD-related low levels.

From remission to flaring in one week: What 2015 taught me about life with Crohn’s

I woke up from my colonoscopy five years ago and was told “You’re in remission”. Tears of happiness streamed down my cheeks. I was in disbelief. Was I dreaming?! It took a decade for me to hear those words, and one week to be robbed of the title.

One week later, I was hospitalized with a small bowel obstruction. The first of three that would happen that next year. So many of us in the chronic illness and IBD community specifically, are constantly chasing after “remission”. But what does remission really mean?

Remission is different for every person, much like IBD manifests differently in everybody. When I heard the word remission five years ago, it felt magical and exciting.

Remission2015

Celebratory post-colonoscopy cheesecake after finding out I was in remission Feb. 2015.

Hell, my mom and boyfriend (now husband) and I went out and celebrated with a big meal at The Cheesecake Factory. When I flared days later, I started feeling skeptical of the term and came to realize how fleeting and elusive remission can be. I laid in the hospital bed, devastated and dumbfounded by what had just transpired.

It took three bowel obstruction and 18 inches of my small intestine to ultimately be removed in August 2015, for me to reach surgical remission. While surgery is not a cure, my bowel resection provided me with a new beginning. As I approach my five year “remission” anniversary this August,

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Hospitalized a week later with a bowel obstruction.

I remain on edge. I’ve been blessed to be on cruise control with my illness these past few years. My GI has me well-managed on my biologic and vitamins, I know how to read my body when it speaks to me through symptoms, and when I suspect something is going awry, my care team and I nip the disease activity in the bud.

To me, remission is waking up each morning with the expectation that I’m going to feel well and be able to take on the day as planned. Remission is having more ‘feel good’ days than painful ones. Remission is being confident to attend social outings, travel, and do all the things I set my heart out to do, without feeling suffocated by the fear of the ‘what ifs” of a flare. Remission is being able to focus on the part of me that is so much more than my disease. remission blog

Remission tends to the be the “goal” when it comes to IBD, but it’s not always feasible. It’s easy to see posts on social media and feel like you’re failing because your body is failing you, repeatedly. It took me a decade of living with Crohn’s and surgery to be in remission.

While I’m a compliant patient, I don’t take much credit for my remission. I know how at the drop of a hat I could be rushing to the ER, unable to breathe from my abdominal pain. I remember all the flares that blindsided me and I know my body can decide to flip the switch at any given moment. I feel lucky most the time—while my Crohn’s could be worse, it could be better, too. Remission doesn’t mean that symptoms are non-existent, moreso that the majority of the time I feel well with some not so great days sprinkled in the mix. While in this state of remission, I remind myself not to take this time for granted, not to become complacent, and to stay vigilant on managing my symptoms and overall well-being.

Rather than focusing on the big “R” word that’s loaded beyond belief and placing so much emphasis on it, let’s focus on feeling the best we can each day, communicating openly with our physicians, friends, and family, and taking this uphill battle one step and one day at a time.