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

April 6, 2020August 11, 2020Leave a comment

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. 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 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.

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.

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.

“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

March 30, 2020April 5, 2020Leave a comment

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. Jadyn 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. I’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. The 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.

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.

http://www.ashafferphotography.com

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.

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

March 23, 2020March 23, 2020Leave a comment

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.

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?

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.

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

March 9, 2020March 9, 20202 Comments

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.”

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.

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

March 2, 2020March 1, 2020Leave a comment

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.

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,

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 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.

Tactics for Utilizing a Health Diary to take on your IBD

February 24, 2020February 24, 2020Leave a comment

Many of us struggle to manage our chronic conditions, between ongoing appointments, day to day life, and coping with the unpredictable symptoms of our conditions. This is where our mobile phones come in handy. Thanks to ever-evolving technology, we can feel empowered and a bit more in control of our overall well-being by tracking, managing, and learning about our ongoing health treatment.

Going with the adage of what gets measured gets improved. There are a few things we can do to make managing our chronic disease(s) easier. The first step is keeping your care team in the loop, the second is following through on your care plan consistently, and the last is to focus on monitoring and potentially improving your treatment plan as needed.

Having a Care Team Can Help

We all utilize the help of others to maintain our health one way or another. The case may also be that you could be taking care of others.

As an example, in the CareClinic health diary app, you can add caregivers phone numbers to quickly save all information in one place for times of need. Additionally, users can enable the sharing of “Progress Reports” which include adherence information and all other modalities to optimize your health. Sometimes a caregiver may not be aware of what you need to take and when, this too can be shared via the “Share Care Plans” functionality.

Sticking to Your Care Plan Can Be Easy

A care plan from your doctor may encompass taking certain medications at a certain time. However, a comprehensive care plan is much more than that. A care plan is your “self care to-do list” which will enable rapid health improvements.

It may include eating healthier, eating at a certain time, tracking and managing your calories or sugar levels. Some other things that can be added to a care plan may include tracking activities, therapies and even setting reminders to check certain measurements and symptoms throughout the day.

A care plan is everything you need to do to maintain good health. Adding these values will reduce cognitive burden and help you remain on track. An app such as the CareClinic app can provide alerts, notifications and warnings based on your care plan, even better.

Monitoring Progress and Adjusting Your Health Accordingly

Patients often wonder if there is a point in maintaining a health diary. It may make sense to use a calendar or reminders to be notified when to take medications, but are there any inherent benefits to recording when medication was taken, or how we felt afterwards in a diary?

The answer as you can imagine by now is an astounding “Yes, there is a point and a need.” By recording this pertinent information in a health diary, you no longer have to guess and see if a certain medication is causing adverse reactions or flare-ups. You’re taking the guesswork out the picture and providing yourself with more clarity.

Apps are now capable of leveraging AI to automatically help you figure out what’s working and what’s not. Even if the app is not able to make these correlations, your care team will appreciate the undertaking and potentially understand your health a bit better. When you provide data in a structured way to professionals, they can better learn and tweak their treatment for you, no matter what condition you are up against.

Tracking Health for a Better You

A health diary enables greater understanding about your own health and helps communicate the information in an objective way to healthcare professionals.

Web based and mobile diaries are a tool that can help you discover new information about yourself and provide for a more in dept history of how your treatment is progressing. In fact, it has been proven that maintaining a health diary can lead to a multitude of benefits (see this study). You can easily get into the habit by starting to track the essentials and then slowly adding more items to your care plan as you start to see patterns emerge.

This post is sponsored by CareClinic. Thoughts and opinions shared were my own.

Finding faith through the storm that is IBD

February 17, 2020February 17, 20207 Comments

Prior to falling ill two years ago and finally receiving a Crohn’s disease diagnosis in December 2019, 33-year-old Kolby Noble, of Maryland, never knew how much her strong faith would help her through the ups and downs of chronic illness. As a wife, mom of three, and an educator, Kolby shares a heartfelt, eye-opening piece that beautifully captures how faith correlates to the daily battles we face as people with IBD.

Picture it. Jesus had left His disciples in their boat on the sea so that He could spend some time alone. It wasn’t long before a powerful storm developed. Jesus returns to the disciples, walking on the water through the wind and the waves, but they don’t recognize Him and are afraid. Jesus speaks to them, saying, “Take heart; it is I. Do not be afraid”. (Matthew 14:7)

I’ve always been in awe of the ocean. As a child I used to play in the waves of the Atlantic or stare into its horizon and I always felt so small in comparison. I would often wonder how the same God that made the ocean, so vast and wide and deep, would create me, too. How could the same God who told the waves to dance along the shore love and know me so intimately? My life has been much like the ocean. Much of it has been beautiful and calm. But like the disciples and everyone else there have been storms, too. Somehow it’s always through the wind and the waves of those storms that I hear Jesus call to me.

It’s been two years since I first thought something was wrong with my health. For two years the wind and the waves have strengthened until, like the disciples, I found myself in the midst of a powerful storm. I was as sick as I’d ever been in my life, and couldn’t figure out why I wasn’t getting better. In December 2019, I received confirmation that I had Crohn’s Disease. I was afraid. But through the wind and the waves, I heard Him say “Take heart; it is I. Do not be afraid.”

Back in the boat with Jesus that day was a man named Peter. Peter saw Jesus on the water and when Jesus called to Peter to step out of the boat and come to Him, Peter didn’t hesitate. In the midst of the storm Peter climbed out of the boat and started walking to his Savior. Soon, though, Peter took his eyes off of Jesus and focused instead on the wind and the waves and began to sink. He cried out “Lord, save me!” (Matthew 14:30) and Jesus instantly reached out His hand to catch Peter. When He pulled Peter from the water Jesus simply asked “Why did you doubt?” They returned to the boat and the wind and waves cease.

Much like Peter, I knew Jesus before the storm of Crohn’s Disease developed. I had witnessed His miracles in my life, just as Peter had before the storm arose on the sea that day. When I received my Crohn’s disease diagnosis, I heard Jesus tell me not to be afraid. As I stepped out to meet Him in the storm for comfort it wasn’t long before I took my eyes off of Him and focused instead on the wind and the waves. It’s easy to focus on feeling sick, being in pain, being too exhausted to get up each day, or not having the energy to take care of your family. I was taking medication multiple times a day just to function, to somehow get through each work each day. I found myself focusing on all the tests and doctor’s appointments I had to go to, and the infusions I’ll have to take for the rest of my life to maintain any sense of health I used to know. I focused on the unpredictability that is Crohn’s, and not on the predictable, steadfast love that can only be found in our Savior.

God doesn’t promise those that believe smooth seas or calm waters. He never says that life is going to be easy. He actually tells us just the opposite. Isaiah 43:2 says “When you go through deep waters, I will be with you.” What a comfort to know that in the midst of our storms we can look out and find a Savior. God knew before I ever took a breath I would have to fight this disease. He knew that it would be hard, and painful, and exhausting. But He loves me, and He is with me, and it’s because of Him that I can face the storm. You can, too.

If you have just been diagnosed with a form of IBD, I encourage you not to focus on the wind or the waves. Focus instead on a Savior who is ready to reach out and catch you when you start to sink. Don’t doubt His love for you. Don’t doubt that He will be with you through the storm. Instead, listen for the voice that says “Take heart, it is I; do not be afraid”. For mightier than the waves of the sea is His love for you. (Psalm 93:4)

Drowning out the noise of social media as a mom with Crohn’s

February 3, 2020February 3, 2020Leave a comment

Comparison. Feelings of inadequacy. Fear of missing out. Guilt. Jealousy. Chances are, you’ve experienced all these emotions and then some when it comes to your involvement on social media. While being able to connect with friends, family, strangers, and celebrities right at our fingertips can be fun and entertaining, it can also be detrimental to our overall well-being, especially as people who live with chronic illness. So how can we drown out the noise and focus on accounts and people who evoke joy, fulfillment, and empowerment? Oftentimes it’s easier said than done, but here are some helpful reminders.

Think about how you narrate and select what to post, others do the same. That selfie you posted with your husband, if only your followers knew you guys were having words hours before. That perfect photo of your child laughing, let’s not forget about the 50 takes and the tantrum that occurred before and after it. Remember that the photos you see capture a moment. They are often edited with filters, captions, you name it. Even though we know everyone crafts their content the same, we’re all so quick to envision how much better or how “perfect” the lives of those in our “inner” circle are. All comparison does is rob of us joy.

If a certain person or a page is making you feel negatively, stop following, stop engaging. One of the best tools on Facebook and Instagram is the ability to unfollow (but stay friends with people) and “mute” people on Instagram. Pretty sure we all have accounts that make us feel a certain way, it’s not healthy to continue an online presence with someone who makes you feel unhappy or less than.

Stop chasing the “likes” and the followers. It’s so easy to get caught up in the numbers. How many people liked this post, how many followers does he have, how did she get so many followers? In a world where we all want immediate gratification, think about how it feels when you share something and there are crickets on the other end. Use your social media channels as a platform to share what you care about and what matters most to you, rather than trying to think about what others want to see.

Be conscious of the content your put out in the world. Everybody is facing their own struggles, regardless of how wonderful their life looks on social media. Be cognizant of the fact that your words and posts could cause someone else to hurt. Think about how your friends with fertility or child loss feel each time they see a pregnancy announcement or baby photo. Think about how your friends in the chronic illness community feel when you’re talking about your remission or even your setbacks. It’s not to say that we shouldn’t celebrate huge milestones or challenges, but there’s a way to be tactful, a way to be considerate. Be empathetic to others.

For me, my Crohn’s has been in remission since August 2015. I’m going on almost five years of feeling well, most of my days, which is great…but often as people and as patients we feel a sense of guilt for doing well when our peers are in a flare or constantly in the hospital. There’s a survivor’s guilt that plays into chronic illness. While you may want to celebrate how well you feel, also remember when you were the person in the hospital bed.

Hospitalized with a bowel obstruction the year of my surgery.

Remember how you felt the day you were diagnosed. Remember how you felt getting rolled into surgery. Remember how you felt waking up from your colonoscopy scared to hear the results. Just remember.

While social media has done wonders for the IBD community and other health spaces, there are still people who bring others down. There are many people professing cures and providing false hopes to those desperate for answers. Be weary of who you let in. Recognize that there are keyboard warriors out there who don’t care about you and will say something for shock value or to bring you down. Be skeptical when you see messages from strangers telling you to try this diet or join a group. I know when you’re feeling isolated in your illness you jump on the opportunity to connect with someone you think “gets it” but be mindful of these connections and guard your heart.

One of my favorite things to do after putting my kids to bed is to charge my phone in the kitchen and turn it on silent. This forces me to be present with my husband and relax. Relax from the pressure of commenting and engaging and just shut out the outside world. While being accessible and helping others is one of my favorite parts of patient advocacy and something I do with all my heart, it’s important to know when to take a break and when to focus on who is right in front of you, rather than a stranger who you’ve never met.

Motherhood and IBD: The parallels and what I’ve learned

January 13, 2020January 13, 2020Leave a comment

Let me tell you how small a bathroom feels when you’re on the toilet, your crawling baby is at your feet going after the garbage can and your toddler is pulling at the toilet paper. This has been the scene of my life, multiple times a day, over the past year. Sophia turns one tomorrow (Jan 14!). I feel like we blinked and her first year passed by. That being said, having a baby and a two-year-old, while being a stay-at-home mom and freelancer, who happens to have Crohn’s disease, has its challenges.

Each day, while often exhausting, has been an incredible blessing. I remember being pregnant and wondering how motherhood in general, along with IBD would be. I remember when Reid was born in 2017 and learning to adjust to parenthood and having a family. I remember being pregnant with Sophia, wondering how I would have any capacity energy-wise to take on being home with two little ones, but I did it. Somehow you find a way to get by, to exist, to adjust to your new normal.

Much like navigating chronic illness, with motherhood, you have moments where you feel you’ve found your groove, and then suddenly something happens to prove otherwise. But, that’s the beauty of it. The hard times are temporary and then the beautiful, fill- your-heart with overwhelming joy and happy tears in your eyes moments happen when you least expect it.

Parenthood isn’t all sunshine and rainbows. Some moments really suck. Some moments are incredibly frustrating and overwhelming. Some moments you wonder how you’re going to get through. I think there’s this expectation and this fake persona (thanks to social media) that makes us all think we need to do more, be more, and love every moment of parenting, when we all know that’s not the case. Raising little people isn’t for the faint of the heart, but it’s one of the greatest gifts we can be given.

Through motherhood I’ve learned the importance of health—physically, mentally, emotionally, and spiritually.

Through motherhood I’ve learned how imperative it is to rely on your support system. There’s no sense in trying to do this alone.

Through motherhood I’ve learned to soak everything in, because you blink, and another year or milestone goes by.

Through motherhood I’ve learned the importance of listening to my body, resting when necessary, and saying “no” to plans that don’t fill my cup.

The thing is—when you live with a chronic disease like Crohn’s, you learn all these “lessons” long before you become a parent. But, the actual meaning shifts, when you have more to think about than just yourself.

One year ago, today, I went to bed a mom of one and the very next day I woke up, had a c-section and my heart doubled in size and we became a family of four. The addition of Sophia to our family has been an incredible blessing. I don’t know how I ever lived without her. It’s amazing how families adjust to their new dynamic and change in such beautiful ways as they continue to grow.

Photo credit: Alexandria Mooney Photography

Whether you want to be a mom someday, are currently trying to have a baby, are pregnant, or a mom of one or several kids, let’s all practice a little more grace and less judgement. The only shoes we’ve all walked in are our own. No matter how people choose to present themselves, everyone has bad days, everybody has their own set of struggles and worries, and chances are, we can all relate.

Coming of age with IBD: The 20s and the 30s and how they differ

January 6, 2020January 6, 2020Leave a comment

The new year and new decade have almost everyone reflecting on the last 10 years of their life, looking back at then and now, and anxiously excited to see what the next 10 years will bring. Framing life into decades is interesting, especially when it comes to chronic illness. I wasn’t diagnosed with Crohn’s until age 21, so I can’t speak to what it’s like to live with IBD as a child or a teen. What I can speak to is what it’s like to live with a chronic illness in your 20s and in your 30s and how your lifestyle, your expectations for yourself and for others, shifts as you age.

In my opinion, each decade with IBD presents its own unique set of challenges. Of course, each and everyone of us has a different looking “timeline” as our lives play out, but for the most part, certain aspects of “coming to age” happen at one time or another, depending on what’s important to you. Here’s what my 20s and 30s has looked like:

The 20s:

Said goodbye to being a child and truly became an adult.

Fulfilled education goals, navigated professional life, followed career aspirations.

Dated and found love.

Enjoyed a fun social life with friends.

Moved out at age 22 and lived on my own in Minnesota, Wisconsin, and Illinois.

Adopted my dog, Hamilton.

The 30s:

Got into a groove professionally, felt more confident in my skills and what I’m meant to do.

Moved to Missouri to follow love and got married.

Got pregnant and had two babies.

Fewer social hang outs and more family time.

This may just look like a list, but when you live with IBD these life changing milestones and moments have different meaning and carry different weight. When I was diagnosed at age 21, it was before I landed my first TV job. I had just graduated college and spent years interning for free, worked four nights a week on the college TV station…for free, only to be blindsided with a disease that made me wonder if all my hard work was for nothing. At 21 I wasn’t sure if I would ever find a man willing to stick by my side through the ups and downs of chronic illness or if I was worthy of a long-term relationship. At 21, I moved eight hours away from all friends and family, three months after being diagnosed, while on 22 pills a day, to follow my dream of being a journalist. There was great responsibility in living on my own, taking my medications and being a compliant patient, while the rest of my peers’ greatest worry was what going out shirt they were going to wear to the bar that night.

During my 20s I put more emphasis on what others thought of me and just wanted to fit in. I didn’t want my disease to hold me back in any way.

Now that I’m 36, and can look back on what it was like to live with Crohn’s throughout my 20’s and now well into my 30s, I must say…while life with this disease is never “easy”, it becomes a lot easier to live with as you get older. Here’s why.

I followed my dreams of being a journalist and worked successfully full-time for more than a decade in TV stations and PR agencies, despite my diagnosis.

I found a man who loves me for me and didn’t think twice of being my partner even though I had Crohn’s. I met Bobby one month before turning 30. Dating him, marrying him, and building a family with him has brought a great sense of comfort and stability into my life. When I flare or I’m having a rough day, I rely heavily on him to be my rock and lift my spirits.

Fatigue from motherhood when you have a chronic illness can be mind-numbing and debilitating, but seeing your body create a life and then bring a baby into this world makes you feel a renewed sense of love for a body that you’ve been at odds with for years. IBD and motherhood has it’s worries and challenges, but at the end of the day, your children will be the greatest light in your life, and the most magical motivators of strength. There’s almost too much going on to worry about your own well-being, which is both a blessing and a curse!

Gone are the days of going out at 11 pm, now I rarely go out and when I do, I’m usually home before 10. There’s no pressure to stay out until bar close or take a shot. My friends are all grown women, many of them are moms, our priorities have shifted. Adult conversation over brunch or a glass of wine and some sushi or tapas is refreshing and rejuvenating. I openly communicate about my disease when asked and don’t shy away from the conversation like I once did.

If you’re reading this and you’re newly diagnosed, a teenager, a 20-something, trust me when I say that balancing life—all your obligations, your network of support, your job and what you’re meant to do with your life will find it’s way. Don’t beat yourself up by creating a timeline or a vision board that sets you up for failure. Don’t try and keep up with the Jones’. Don’t compare where you are in life to your peers. Because there is no comparison. When you have IBD you are being unfair to yourself if you try and be just like everyone else, because you’re not. And that’s ok. Use your experience as a patient to give you patience within yourself. Everyone faces struggles, everyone faces setbacks, but someday I promise you’ll look back and those very same struggles will be the reason you are strong, focused, driven, empathetic, and living the life you were meant to live.

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Tag: invisible illness