Living life unapologetically as a Black woman with Crohn’s disease

When Melodie Blackwell was initially diagnosed with Crohn’s disease in October 2018, she felt alone. Not because of how isolating IBD can be, but because she couldn’t find many people who were speaking about their journey from the perspective of what it’s like to be a Black or Brown woman in the IBD community. JPixStudio-8924 copy

When I looked for information from the IBD organizations, I felt like there was little to no one who looked like me. Sometimes, and history shows this, we can’t be unapologetic about being a person of color. We must tell our stories in a way that seems more digestible to White America. When I started sharing my journey, I wanted to reach those in the minority community from various walks of life who felt isolated or alone, to let them know they weren’t by themselves and there is a space where they belong. With my non-profit Color of Crohn’s and Chronic Illness (COCCI), I believe that’s what I have been able to do,” says Melodie. 

Dealing with feeling “uninvited”

As a wife, mom, entrepreneur, Black woman, and Crohn’s warrior; Melodie’s view of the IBD community has multiple perspectives. At this time, inclusion and diversity isn’t one that’s at the top of the list. “In order for any organization to be inclusive, they have to have to have a deeper understanding of a community. And when it comes to those who are in the Black community, most people don’t go where they don’t feel invited. Where does that thought process come from? Let’s talk about history and “whites only” venues, seating on the back of the bus, segregation ending less than 100 years ago, and the Tuskegee Experiment to name a few things. Many of us still have family members who can discuss all of the aforementioned like it happened yesterday.” IMG_4657

When it comes to Melodie’s thoughts on not feeling invited, “I am fine with that, because personally, I go where I am not invited. Not having an invitation doesn’t mean that I don’t belong. But as a culture, that’s not a resounding thought process. I know that that can seem odd, it’s a systemic issue. If you don’t know the culture, cultural differences, and historical oppression, you won’t understand that. There are some deeply rooted healthcare adversities – they live on today.”

Leading up to her diagnosis and even today, Melodie has dealt with ignorant physicians along the way. Her Crohn’s presented differently than most. It started with random body parts swelling. She had a doctor tell her she just needed to “squeeze those parts to help the blood flow”. She’s had doctors display their implicit bias and not listen…which resulted in abscesses bursting in her colon and emergency surgery.

Health equity isn’t given, it’s fought for

It’s the inequity that has inspired Melodie to go above and beyond and amplify her voice to show others they can do the same. She launched Color of Crohn’s and Chronic Illness (COCCI) to help lift people up and let them know they aren’t alone and they didn’t choose the challenges before them. She’s received countless messages from people embarrassed about their symptoms. Melodie is driven to show there’s no reason to feel ashamed about your IBD and she’s focused on creating a space that feels safe to get answers and receive help physically and mentally. IMG_1783

I want to empower people of color and beyond, to take control of their healthcare and not feel like they are a victim. I want them to have the resources that they need. I want COCCI to be readily available to help them find doctors, learn more about healthcare, provide a safe space to express their thoughts, help them advocate/lobby for their needs – I want health equity and to decrease the undeniable disparities in this community.”

Don’t be afraid to live

As an IBD mom and patient advocate, Melodie’s main advice is to live. IBD and chronic illness causes all of us to make changes and adjustments throughout the process, but we are still here, and we still can have full lives.

Some days will be tougher than others, but a mindset that says, “I choose Life” every single day, will change your life in the absolute best way,” says Melodie. “You set your limitations, and you determine your victories; don’t let IBD take that away from you.”

You can follow Melodie and COCCI on Instagram:

@melodieblackwell

@colorofcci

Check out her website

 

Digging in the Archives: Emails I wrote following my Crohn’s diagnosis in 2005

When I started my blog, Lights, Camera, Crohn’s, four years ago, my main mission was to be the voice I desperately needed to hear upon diagnosis. As I reflect on my 15 year diagnosis anniversary, I thought it may be helpful to give you a behind the scenes look at some of my email archives from 2005…days after finding out I had Crohn’s disease. I’ve never shown these to anyone (other than the recipients, of course!)…but my hope is that in sharing private feelings, you’ll be able to see how my perspective about life with IBD has shifted and evolved since I was a 21-year-old girl feeling up against the wall with nowhere to turn.

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Photos taken in May 2005 (prior to diagnosis) and September 2005 (while on 60 mg of prednisone).

This article is dedicated to the newly diagnosed. We’ve all been in your shoes. What you’re thinking. What you’re feeling. What you’re struggling with. We get it. It’s not fair to compare where you are in coping to someone like me who has been dealing with Crohn’s for 15 years and been in remission for nearly five.

Here are snippets from my emails to friends. Reading the pain in my words and re-living this difficult time can be a trigger, but reflecting and seeing how far I’ve come is also incredibly empowering.

“I’m having a really hard time with this, harder than I ever could have imagined or dreamed…and I’m having a hard time trying to act like everything is great on the exterior. I feel like I’m on the brink of a breakdown…the drugs are getting to me so much. I woke up with visible shakes this morning and have been shaking all day. My moods aren’t me. I feel like I am a different person and that as much as I want to be the old Natalie, it’s just so hard to wake up smiling and happy. I’m getting tired of my family constantly asking me if I’m doing ok and feeling ok and everyone staring at me while I eat…I just feel like a pity case to so many people. I feel so alone in all this. I’m trying to be upbeat…and I know that it is going to take time to get acclimated to the lifestyle changes and everything, but right now I’m just having a difficult time figuring out who I am and where I’m supposed to be in life. The insomnia has left me up every night just thinking and wondering what the future holds and if I am ever going to feel normal again.”

“I try so hard to be strong and tough about this and it just all stays bottled up and I just started crying and am having a hard time stopping. It’s just so hard. I look at pictures and think back to even graduation time and it just freaks me out that I went from living a carefree, healthy life…to this. I know it is something that I will always have and that I have to get used to it…but it’s hard for me to handle at times. I don’t mean to complain or worry you or anything, I just feel as though I need to get out some of this frustration before I go to bed. I’m scared of getting sick again and having to go in the hospital sometime again…and I just feel like I can’t go a day without a thinking about all the what ifs. You know I analyze so much…haha…it’s like a living nightmare!”

“I’m sorry if I talk about this too much. I’m sure it isn’t the most appealing or attractive thing to have to hear from your gf…but sometimes it becomes a little overbearing on me…and I can’t hide my fears when it does. I mean I refuse to let this change who I am and the life I will lead, it’s just at times it seems so much bigger than me, and so much larger than life. I know I have been complaining a lot about my puffy cheeks and stuff…and I know that prob gets old…I just get so self-conscious about it…and it just sucks that I have exactly 2 more months left on the steroid. As my dosage gets lower and lower the side effects should stop and start to go away…I’ll believe it when I see it!  I guess it’s just scary to me to see the effects of a drug that are helping me on the inside and hurting me on the outside. I just want to look the same to you as I did the last time you saw me.”

“What I won’t ever apologize for is this summer, because I was going through a living hell, and I saw which friends were there for me and which weren’t. I was ridiculously ill from June 5th-my bday (August 24) and you were angry with me for not keeping in touch. I couldn’t even stand to get myself a glass of water for weeks and was hospitalized for days. I never heard anything from you. I know that people handle those types of situations differently… but that was the hardest thing I’ve ever gone through in my life, and I really needed a strong support system. Battling with a disease and feeling like I completely lost myself has made me have to be a little selfish these past few months. I’m just coming to grips with it all now and thank God I’m feeling well…but it is still an adjustment and has given me a complete different perspective on life.”

You guys. I’m sitting here crying. I’m that girl. I wrote those words. That was 15 years ago and thinking about that time still feels like a knife in my chest. Even though this disease has enabled me to gain so much gratitude and perspective, it still robbed me of a lot. It still hurts…sometimes more emotionally than physically these days since I’m in remission. These diagnosis anniversaries stir up a lot of memories. While I choose to think of it as a time to celebrate another year of taking this disease on with all the strength I can muster, it’s also a time that takes me back to some of the most challenging and difficult moments in my life.

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I colored this in my hospital bed after being diagnosed with Crohn’s.

I wish I could hug that girl and tell her it was going to be alright. The career, the love, the family…it would all happen. If you’re in that difficult space right now coming to terms with your newfound identity following diagnosis or getting over a flare up, please know this disease ebbs and flows. It’s not a constant. The good and the bad moments are fleeting, but your resilience and your confidence in coping becomes so much a part of who you are, it’s hard to recognize who you were before.

The Chronically Honest: The Inspiration Behind the Illustrations

She’s the person behind the artwork that has helped connect thousands of chronic illness patients on Instagram. I’m talking about a 20-year-old woman named Julia who created “The Chronically Honest” in hopes of making others feel less alone. Diagnosed in November 2019 after struggling with symptoms for three years, Julia is coming to grips with her battle against IBD in the middle of a global pandemic.

The first in her family to take this disease on, her experiences thus far have felt a bit isolating. As a college student, she often feels out of place amongst her peers.

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“When I was first diagnosed I really searched for something, whether it be art, or blogs that portrayed all the feelings I was experiencing and let me know that it was okay to feel them,” says Julia. “I was met with countless stories of positivity and turning a bad situation into a good new perspective on life. While I definitely appreciate that and know positivity is vital when dealing with IBD I was searching for something that showed struggle and depicted the crappy side of living with this disease (pun intended)!”

Striving to dig beneath the surface

With The Chronically Honest, Julia strives to show both the ups and the down of living with IBD. She hopes that by showing the struggles, she can make fellow patients feel better understood. Image

“My inspiration to create my illustrations often comes from struggles or triumphs I’m experiencing in the moment. If I am not doing well and have had a bad day, I will create an illustration that reflects that, and vice versa. However, I also get inspiration from others. If I am scrolling through my Instagram feed and see a quote that really resonates with me and my experience and I think it could help others, I will make an illustration based off that.”

Creating art to cope

“My art honestly helps me cope with my IBD more than I could ever imagine. It’s the best distraction and it’s a wonderful outlet for exploring and sharing my feelings. Often when I’m super sick or have to stay home because I’m symptomatic, I will channel my frustration and sadness into making art.”

Julia’s artwork can take her anywhere from five minutes to multiple hours. Some of her biggest fears lie in finding love, becoming a mom one day, and ultimately needing surgery. All aspects of living with IBD that many of us can relate to. Image (1)

The Chronically Honest is as beneficial to Julia as it is the rest of us. Her artwork exemplifies what so many of us feel throughout the rollercoaster ride that is life with IBD. As a 36-year-old, who has lived with Crohn’s for 15 years, I’m constantly amazed and inspired by the work Julia is doing to not only help herself, but others. Her art is raw and genuine—it will speak to you. You will feel seen. You will feel heard. If you don’t already, be sure to give The Chronically Honest a “follow” on Instagram.  She says if you want a custom illustration, you can send her a direct message!

 

12 years on a biologic: What I’ve learned along the way

It’s been 12 years since I apprehensively went to my GI’s office with my mom, trembling in fear about the what ifs and worrying about the pain of the injection and how my body would respond. One dozen years ago I threw caution to the wind and knew I needed to take the leap. I trusted my physician. There was no other choice. I knew I needed more to control my Crohn’s. I realized my quality of life depended on it. My present life and my future deserved more. IMG-4785

I wish I could tell that frightened 24-year-old girl that a biologic would enable her to fulfill her dream of working full-time in television, that she would go years between hospitalizations, that she would meet the love of her life, travel out of the country, and have two healthy children…all while on a biologic.

This week—I share my 12 tips for navigating life on a biologic and what I wish I knew 12 years ago today.

  1. Needing medication is not a failure. Not everyone has the luxury of being able to “heal their gut” solely with food and that is ok. You are not less than because you need to be on a biologic. You are not giving up or taking the easy way out.
  2. Side effects are unique to each person. Just because one person responded beautifully to a biologic, doesn’t mean that you will. The same goes with horrible side effects. One person’s experience has nothing to do with yours. IBD is unique in each one of us. While some people get a “Humira hangover” and are in pain leading up to their injection, others like me, deal with no side effects whatsoever. Don’t base your experience off anyone but your own and remember to consider the benefit vs. the risk.
  3. Google is not your friend. Prior to starting a biologic or when you are on one, it does you no good to Google and read all the doomsday laundry lists of “what ifs” and horror stories. If you want to educate yourself and truly learn more, communicate with your physicians and connect with fellow IBD patients who understand your reality.
  4. The drug fails you; you don’t fail the drug. Time and time again, I see patients say… “I failed Remicade. I failed Stelara. I failed Entyvio. I failed Humira.” You did not fail anything. This is not a blame game and how your body responds to biologics is completely out of your hands. If a drug doesn’t help limit inflammation and control disease progression, it fails you and you move on to the next.
  5. Have a routine and be compliant. Life gets hectic and being on a biologic must become a part of your routine. It’s helpful to keep track on a calendar or to set up an alert on your phone. I’m old school and write R or L in my day planner…meaning “Right Leg” or “Left Leg”…you’d be surprised, you won’t remember which leg you last injected two weeks ago. I’ve done my Humira injections on Mondays since 2008. I’ve always liked that day of the week because it doesn’t interfere with the weekend and I get it out of the way. No one likes Mondays anyways. Biologics aren’t just something you skip or can forget like a daily multivitamin. For the drug to work you must be compliant and stay on schedule.
  6. You can get pregnant and breastfeed while on a biologic. The most common question I receive from women with IBD is “can I get pregnant on my biologic?” and “can I breastfeed?” …the answer to both of those is a resounding YES. To safely bring a baby into this world, the mama’s health must come first. You need to be a safe haven for your baby and keep your IBD well-managed. By going off your medication, you put yourself at much greater risk for flaring while pregnant and after you deliver. I was on Humira until 39 weeks with my son and 37 weeks with my daughter. To learn more about biologics and family planning check out the IBD Parenthood Project and IBD Moms. IMG_6037
  7. Communicate openly with your GI. Check trough levels every now and then, especially when you’re feeling symptomatic to see if your drug level is therapeutic, if your dose needs to be increased, or if you’ve built up antibodies and need to possibly start a different biologic.
  8. Think about your lifestyle if you’re having trouble deciding which biologic to try. Back when I started Humira in 2008, there were only two biologics for IBD on the market: Remicade and Humira. At the time, I was a morning news anchor and did not share my Crohn’s disease with the public—so choosing to do an injection in the comfort of my home vs. being in public getting an infusion was a no-brainer. Now as a mom of two, I’m grateful for that choice. You can’t beat the convenience of being able to do a 10 second injection on your couch. I have so many friends who spend hours upon hours getting an infusion—having the stress of lining up childcare and allocating that much time and resources to get my medication would be a struggle for me. Let alone needing to get an IV…I know I’m not alone when it comes to having bad veins! I understand you need to go with what your body responds best to and what your physician recommends for treatment…but if the decision rests on your shoulders, I would absolutely choose injection over infusion.

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    Injections at home make chronic illness mom life a bit easier.

  9. Consider yourself “lucky” if you’re starting Humira now. The first 10+ years I was on Humira the injection was very painful. I know of people who had to take anti-anxiety meds just to feel comfortable receiving the injection. In 2018, the Citrate-free (pain free) version was released in the United States. Click here to watch my emotional experience doing an injection with the pain-free formula for the first time, while pregnant. This has been a game-changer for everyone on Humira, young and old. Self-injecting takes some getting used to, but it’s a hell of a lot easier now that you don’t have to deal with any pain. Chalk this up as a big win for the patient community—and if you haven’t made the switch to Citrate-free yet, make sure you do now!
  10. Drown out the Debbie Downers and the naysayers. You are going to come across friends and family who most likely have good intentions…but will question your decision to be on a biologic and offer useless, worrisome advice or stories of their friend’s friend who died from lymphoma or their boyfriend’s dad who had a bad reaction. I remember people questioning me about being on Humira when we were starting our family. We’re already worried enough, having to deal with the background noise can be the biggest pain of all.
  11. Be inspired by the possibilities. We’re all quick to expect the worse or struggle to imagine a life that doesn’t involve daily setbacks. Think of all the good that can come of this and the quality of life the medication can afford you with. Be patient with your body. Be patient with the drug. Be patient with yourself on this journey.
  12. Get preventative screenings. Stay on top of your appointments outside of your gastroenterologist. See your Ob-Gyn and get annual pap smears. See your dentist every six months. See a dermatologist and get an annual full body screening. Talk with your GI about getting “safety labs” every three months to keep a close eye on your results and make sure nothing is out of whack. See an eye doctor annually, even if you think you have perfect vision. Steroids can cause cataracts and IBD can cause inflammation around the eye. If your child has IBD, make sure to stay on top of pediatrician appointments. Being well-informed about all aspects of your health helps protect you from falling victim to any serious side effects.

BONUS: Reward yourself. Let’s face it. Giving yourself an injection or getting an infusion is not the most enjoyable experience. Think about how you can treat yourself when it’s over. Get some ice cream. Get a manicure. Order that cute pajama set online. Lord knows, you’ve earned it. If you struggle self-injecting, stare at a photo of a family member or friend that exudes strength and resilience, they will inspire you to be strong.

I’m not sure what the next 12 years will bring. Will Humira continue to be my go-to? Will there be a different treatment option? Only time will tell, but for now, I’m incredibly grateful that I’ve been able to stay on the same course of treatment for this long and I don’t plan on doing anything to rock the boat. My wish for you is that you’ll find a treatment that works its magic and shows you all that you’re capable of, despite your IBD.

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.

 

Serving as the Glue to Keep My Care Together: Advice from an IBD mom

For as long as Danielle Fries can remember, Crohn’s disease has been part of her story. Even though she was officially diagnosed with IBD at age 13, she had stomach issues since infancy. Over the last 16 years, she has tried medications, diet adjustments, holistic treatment options, and therapy to reach a happy balance and remission. This week she shares her experience of flaring during pregnancy and how she managed to bring her baby girl into this world and take care of herself at the same time.

When I found out I was expecting, my GI health was stable. I was only taking Lialda and my most recent colonoscopy showed minimal signs of disease, which left me feeling confident. After my first OB appointment, I was referred to MFM (maternal and fetal medicine) for a consult solely because I had Crohn’s and the pregnancy is considered high risk when you have IBD. The MFM specialist took my history, let me ask more than enough questions, and ultimately decided I was on track for a healthy pregnancy. We parted ways feeling confident that my disease was under control and I should return in the third trimester for one more consult to confirm all was well.

My Crohn’s disease had different plans

I struggled early on with morning sickness but something about those stomach pains felt different. As a Crohn’s patient for more than a decade, it can be easy to tell when something is off. By 12 weeks, it was very evident that these symptoms – cramping, nausea, burning, bleeding, the works – were more than just morning sickness. I was on my way to a full-blown flare and my little one growing inside me was stuck for the ride.

My first feeling was fear. I was terrified enough about becoming a mom, but now that my Crohn’s complicated the pregnancy, my mind started racing. Would the baby be able to grow properly? Would the baby end up with complications? Would I make my baby sick? Will my baby end up with Crohn’s like me? The anxiety and unknown of the situation felt beyond overwhelming and I knew I needed to find the right support system to make me feel somewhat in control of all the chaos.

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29 weeks pregnant with baby Nora

Turning to my most trusted fellow IBD warrior, my mom

My mom was my first source of reason. She could understand and relate to what I was going through more than anyone since she too has Crohn’s. She got diagnosed while pregnant and flaring with me! While her Crohn’s has never been as severe as mine, it really helped to find someone who related to the fears and uncertainty I was experiencing and made it through with a positive outcome.

I was extremely fortunate to find a group of specialists to help bring some answers and clarity to my journey. The entire pregnancy I was in close contact with both my OB and the MFM. The MFM was honest in her lack of understanding of how Crohn’s disease can fully affect the pregnancy and referred me to a GI she trusted. My new GI doctor became my confidant, my champion, my source of calm in the pregnancy. She specialized in the intersection of women’s health and Crohn’s disease, with a specific interest in pregnant women. Finding a GI doctor who I trusted to lead me with a care plan for both my Crohn’s and my baby’s development was the greatest sense of relief I felt since the day I found out I was expecting.

Struggles in the Second Trimester

As I entered the second trimester, I struggled to gain weight and it became apparent that my baby was suffering from intrauterine growth restriction (IUGR). My doctor’s visits became more frequent, the tests (non-stress tests, growth ultrasounds, blood flow ultrasounds) increased and I found myself at the doctor 3-5 times a week. As the visits and tests increase, so did my constant questions, fears, and uncertainties. Never ever be afraid to ask questions – you are the one on the journey and deserve to understand what is going on!

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Final date night at 37.5 weeks

I quickly learned that while I was lucky enough to have three doctors in my court supporting myself and my baby, I still had to be my own advocate. Each doctor had their own niche of where they could help, and I had to serve as the glue to keep my care as one seamless plan. I trusted all the doctors, but wish they could have just had a conference call titled “What the heck to do with Danielle Fries and baby?” rather than leave me playing telephone in the middle. But I learned to be the squeaky wheel to advocate for my health and my baby’s health and not fall through the cracks.

An early induction

After many weeks of testing, deliberation, questions, and my baby’s decreasing growth, my doctors and I decided as a team that an early induction was the best course of action. The OB and MFM felt confident that my baby would grow better on the outside than on the inside and the GI doctor wanted to be able to get my health back in control. I trusted my doctors and asked way too many questions, but felt more confident with a plan of action.

My trust in my care team paid off. Baby Nora was born teeny at 38 weeks and measured in at the 3rd percentile. She spent a few days in the NICU while she gained her strength and learned to breathe on her own. Now that teeny nugget is 6 months old and weighing in at the 90th percentile! I complain daily about how heavy she has gotten and that carrying my baby is more work than going to the gym, but I feel so fortunate. Every single roll (and trust me, they are endless) is a reminder that this girl and I were cared for by the best team of doctors who were by our side every step of the way and gave us both our health. Just after giving birth, I started a new treatment regimen of Stelara shots every 4 weeks and I finally feel like I have my Crohn’s disease back under control.

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Three lessons from one IBD mom to another

  1. Find doctors/care team you trust. You will be talking to them a lot and you need to feel comfortable asking anything.
  2. It is okay to be scared. The unknown is scary and add in the hormones, and it’s a recipe for more! But as much as you may be afraid, you can and will do it and your baby will be okay too!
  3. Be willing to adapt. Whether it’s your timeline for getting pregnant, your birth plan, your own treatment regimen, testing, doctors visit frequency, something is bound to change. I really did not want to be induced (I had heard horror stories of 4 days in labor), but ultimately all my doctors agreed that was the best option for me the baby. And things worked out fine (better than I ever expected!) DANIELLE

 

Cooking in Quarantine: Recipes we’ve found and loved

Cooking during quarantine has taken mealtime and meal prep to a whole new level. Like many people, I constantly feel like I’m thinking about what I’m going to feed myself and my family and it feels like I spend the other time doing dishes. As an immunocompromised IBD mom of two little ones, I’ve used these past few months to be a bit more resourceful in the kitchen.

Prior to the pandemic, I wasn’t the most adventurous. I had my 10-15 “go-to” recipes and never really branched out. While these past few months have been physically, mentally, and emotionally taxing, I’ve found spending some time in the kitchen, while listening to music, is a sweet distraction amongst the unknown chaos going on outside our home.

Since March 12th (102 days!), we have had take-out four times. So, as you can imagine, I’ve had to get creative with my cooking!

NOTE: These recipes do not follow one specific IBD or autoimmune “diet”. I am always hesitant to talk food, as each and every person has unique dietary needs and is able to tolerate food groups differently. If there was one way of eating that was a magic bullet for IBD, we’d all be following it. The best advice I can give when it comes to diet, is to keep a food journal and see what your individual triggers are.

Here are my favorite recipes I’ve found online since quarantine, that have been a hit in the Hayden household:

  1. Slow Cooker Chili. I’ve tried four different recipes these last few months and this one was our favorite. Since my kids are 3-years-old and 17 months, I did not add the hot sauce.
  2. Crispy Chicken. This is SO delicious, but heavy on the calorie count. (Worth it in my opinion!) Made for great leftovers, too. The pasta is to die for.
  3. Slow Cooker Greek Chicken Gyros with Homemade Tzatziki. You guys. As a Greek girl, I more than approved. The tzatziki sauce was fantastic.
  4. Slow Cooker Chicken and Rice. Super simple recipe. I make this with crescent rolls and green beans. Bonus: Makes the house smell great.
  5. One-pot Sausage and Peppers Pasta. Yummy meal, hits all the food groups, with minimal dishes. That’s a win! IMG-3692
  6. Crockpot Pulled Pork. So simple and so tasty. We pair up the meat with Hawaiian rolls and Bread and Butter pickles.
  1. Salsa Fresca Chicken Bake Recipe. I’ve always been a fan of making casserole-type dishes where you put everything together, put the dish in the oven, and that’s it!
  1. Slow Cooker Shredded Chicken Tacos + Mexican Rice Casserole. We’re big fans of Mexican food. These paired up great together along with all the toppings (tomatoes, cheese, sour cream, avocado, lettuce).
  1. Crispy Breaded Pork Chops. + Warm Cinnamon Apples. I’m usually not a huge fan of pork chops, but this meal is good. I usually make green beans for the side. IMG-2680
  1. Ground Beef Taco Casserole. Like I said above, we’re all about Mexican food. My husband loved this one.
  1. Mediterranean Rice Bowls. I found this recipe last year in a Women’s Day magazine and it has been one of our absolute favorites as of late. You can make this with lamb or beef, we’ve only done beef so far. I also buy mini pita breads to go with this. If you don’t have cucumber or don’t like it, I’ve made this with green bell peppers as well. I couldn’t find the recipe online—so I’ll share it here.

Ingredients:

1 lemon

2 tbsp. olive oil (divided)

2 cloves of garlic (I only use one clove)

4 cups of cooked long-grain rice

1 tsp ground cumin

½ tsp ground coriander

1 pint of cherry tomatoes halved

½ a seedless cucumber, cut into ¼ in. pieces

¼ cup of fresh mint

Crumbled feta, for serving

(I tweaked the directions a bit, so I’ll share how I make this)

  1. Make rice according to the box (will take 25 min. so start this first)
  2. Chop the tomatoes, cucumbers, garlic, and mint and put to the side.
  3. Finely grate zest of lemon, then cut lemon in half. Heat 1 tbsp. of olive oil in a large nonstick skillet on medium-high. Add beef and cook, breaking up with a spoon, until browned. (Once browned, discard fat). Add garlic and ¼ tsp of salt and pepper and cook, stirring 1 minute, toss with lemon zest. Transfer beef to a bowl and squeeze juice of 1 lemon half on top.
  4. Once rice is done cooking add it to the bowl with the beef and season with cumin, coriander, and ¼ tsp of salt and pepper.
  5. Squeeze juice from the remaining lemon half into a medium bowl. Toss with chopped tomatoes, cucumbers, and ¼ tsp of salt and pepper. Fold in the mint.
  6. Add the mixture to the beef and rice and top with crumbled feta. ENJOY! IMG-3693

Bonus recipe: While we were visiting the Lake of the Ozarks recently, I created a salad that is simple and delicious:

Butter lettuce

Chopped apples (I use Honeycrisp)

Chopped strawberries

Chopped grapes

Feta Cheese

Pecans (or whatever nut you’d like to add)

Honey Mustard dressing

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.”

 

You are not a burden if you have IBD

When I was 21, in the matter of one week I received an IBD diagnosis and had my heart broken. My boyfriend from college who had previously treated me like a queen, never visited me in the hospital and broke up with me the day I returned home.

I’ll always remember walking into my parent’s bedroom and telling my mom about the break-up. My body frail. My arms battered with bright purple bruises up and down. The weight of a lifelong disease and 22 pills a day hitting me head-on with every emotion possible. My mom’s response, “Well, you’re not perfect in his eyes anymore.”

From that point forward, I worried about the invisible Scarlet Letter of my illness and how it would impact my love life.

Would a man ever be able to love me, for all of me? Crohn’s and all?

You are not a burden.

The recent advice column shared in the New York Times entitled, “Is it Ok to Dump Him Because of His Medical Condition,” plays into every fear and every worry IBD patients grapple with. While Crohn’s and ulcerative colitis can happen at any age, people are more frequently diagnosed between the ages of 15 and 35. Finding out you have a chronic disease with no cure in those youthful years of life—often prior to finding a life partner or starting a career path, is incredibly overwhelming. The fear of the future and what is to come with your hopes and dreams is nearly debilitating at times.

So, it’s pretty freaking ironic when the author of “The Ethicist” who considers “readers’ ethical quandaries” responds back to this question about breaking up with someone because they have Crohn’s by saying:

“Committing to this person may be committing to a life as a caregiver”… and… “You don’t owe it to anyone to accept that burden.”

You are not a burden.

not a burden2Referring to people with any chronic illness or disabilities in this way is not only hurtful, but extremely ableist. You can’t assume everyone with IBD is going to need a caregiver in a partner. If the author had any idea about how Crohn’s manifests, he would know that the disease is a rollercoaster…oftentimes years of being able to manage, followed by hardships, setbacks, and flares and back again.

As a 36-year-old married woman and mom of two, I have referred to my husband as a caregiver, but he’s more so my source of support and someone who sees me for much more than my disease. He would never think of me as a burden. He would never have considered breaking up with me because life could get complicated with my disease. He sees my disease as a part of who I am, but recognizes I am so much more. not a burden 3

You are not a burden.

To the 25-year-old single girl with ulcerative colitis reading this. To the parent of the child with IBD worried about whether their little one will ever find love as an adult. To the guy being talked about in the NYT article who most likely was broken up with—believe this:

You will meet people who turn a cheek once they find out you have IBD or suddenly show disinterest. It sucks in the moment. It feels like you’re getting punched in the gut. But use that pain to recognize that type of person isn’t meant to be your person. Take that heartbreak and use it to your advantage. Set you bar high. Settle for no one. Use your disease to shed light on people’s true colors. Who is going to be there when the going gets tough? Who lifts you up when you’re too weak to stand on your own? Who sees strength in your vulnerability with your health and the way you take on life? your are not a burden5

You are not a burden.

I’ve had Crohn’s for 15 years (next month!). Last night I needed to take a pain pill to quiet the gnawing pain in my abdomen. This morning I had to make a fast dash to the bathroom multiple times in front of my husband and in-laws while my kids needed tending to. I apologized for needing to go to the bathroom so many times. Even as a veteran patient who’s four years into marriage with a man who loves me unconditionally, the words of that damn article rang out in my mind. I felt the guilt and wonder creep in….am I a burden?!

No matter how long you have IBD, no matter how well you have it managed, there are still moments where you feel less than your peers. There are still moments you can’t keep up. There are still moments if you wonder whether you are enough.

Just remind yourself…and I promise to do the same…YOU ARE NOT A BURDEN. And shame on you New York Times…as a journalist, I expect more. And so do your readers.

Activism is a marathon: How to sustain momentum, while keeping IBD in check

Our current reality and the actions, decisions, and efforts we are making are a marathon and not a sprint. Much like life with chronic illness, anti-racism is something that will be an uphill battle day in and day out. You don’t receive an IBD diagnosis and educate yourself and manage your disease for two weeks and think the work is done. You are forced to evolve, learn, see the world through a different lens, while adapting to a new normal.

IMG-2683

Created by @Ericiaa_ on Instagram

The racism that is a part of this country is not going to be eradicated by two weeks of social media posts and protests. But, each genuine and heartfelt decision from here on out has the power to make a huge change. By speaking up and not standing down. By recognizing your own privilege. By standing arm in arm with your peers who have suffered in silence for far too long.

Dealing with the overwhelming fatigue

Fatigue is heavy when you battle Crohn’s and ulcerative colitis, regardless of the current climate in the world. When you couple months of COVID-19 with visibly seeing the divide in our country and all the work that needs to be done, it’s overwhelming. Don’t burn yourself out, don’t feel like you aren’t able to keep up, don’t compare yourself to others.

In recent weeks, I’ve seen countless IBD patients apologizing for sharing their health struggles. I’ve seen people in hospital beds saying sorry for needing support as they head into surgery, start a biologic, or come to terms with their diagnosis. I’ve heard from people feeling guilty for needing a break from social media because the stress and worry is a trigger for their illness.

Chronic illness doesn’t take a break. Chronic illness thrives in conditions when we stop managing it and don’t make our health a priority. Chronic illness doesn’t care if there’s a pandemic going on around the world or a Black Lives Matter protest in your city that you want to be a part of.IMG-2685

It’s ok if you need to focus on you and your IBD. It’s uncomfortable seeing how divisive this world can be and the hurt so many of our friends and family face just for the color of their skin. If you’re like me, it’s made me question and rethink how I’ve navigated race all my life. I have black friends from high school that I just started having race conversations with NOW. I am 36.

Eddie

Friends since 2000. Just talked about race this week.

I have black peers in the IBD community who bring tears to my eyes with their pleas for support and great admiration for them using their voices and platforms to make a change and a paint a clearer picture for the rest of us.

I’ve started changing what I choose to watch on Netflix. We’ve watched “Dear White People” and “13th” after putting our kids to bed this week. We tuned in for the Sesame Street Town Hall on CNN about racism, even though our children are young. It’s never too early to start the important conversations with your family. I’ve started researching books with black protagonists for my kids that also discuss racism, after looking through their bookcase and realizing we only have two books with black characters.

Here are some recommendations I’ve received:

“A Boy Like You”

“Love”

“The Skin You Live In”

“The Day You Begin”

“The Snowy Day”

“Good Morning Superman”

Netflix cartoon: “Motown Magic”

Don’t burn yourself out

At the same time, we all, including myself, have a lot of work to do. This momentum, this energy, and this dedication is going to be challenging to sustain. We don’t want to burn out. We can’t put our IBD on the back burner. It’s up to us to realize when we need time to focus on our health and when we can use our voice and our heart to make a difference.

IMG-2686

Created by The Chronically Honest, on Instagram

If you’re feeling more symptomatic from the stress of these eye-opening and challenging days, give yourself permission to take a break from social media and the news. Your health and well-being come first, and you don’t need to feel guilty for that. If you are desperately wanting to participate in protests but worry because you’re immunocompromised and in danger of getting COVID-19, that’s understandable. Your work and your effort can be done safely at home.

You can be an ally. You can be a friend. You can be a patient. That priority list can be fluid and ever-changing. Take care of others, but always remember to take care of yourself.