Navigating IBD and IVF During a Pandemic WITH A Toddler

When I asked 34-year-old Amanda Osowski how she’s juggling Crohn’s disease, motherhood, and IVF during the pandemic, she said “with caution.” And rightfully so! These times are complicated and overwhelming for everyone. Add some chronic illnesses and trying to maintain your health, sanity, and emotions while doing all that and trying to get pregnant with a second child through IVF, and I’m amazed she found the time and energy to write this guest post! I’ll let her take it away.

Here we are, more than 7 months into a global pandemic, still wondering if and when life may “resume as normal”. To be honest, in my house, life has in some ways paused and in other ways accelerated since the March quarantines began. As an IBD patient on Remicade (an immunosuppressant medication to manage my Crohn’s disease), I have chosen from the beginning to adhere strictly to social distancing, mask wearing, unnecessary exposure and other risk reducing options. 

This also meant that my job, my income, and my ability to support others has transitioned from mainly in-person to entirely virtual. The silver lining of this is that I’m able to work with clients all over the world. Balancing that alongside parenthood, and IBD during a pandemic requires a good bit of patience, strategic thinking, and deliberate planning.  

Gearing up for Baby #2 Through IVF 

My husband and I were diagnosed with Unexplained Infertility in 2017 while trying to conceive our first child. After several failed treatments, we had one successful round of IVF in which I became pregnant with our daughter in the fall of 2018. As soon as she was born, we knew we wanted to have another baby close in age – both for our family planning goals and in hopes that I would be able to maintain my Crohn’s remission status long enough to complete another pregnancy. 

While we began trying naturally as soon as we were ready, we knew that the recommendation for fertility treatment was to wait until 12 months passed after delivering our daughter. I desperately hoped that we’d get lucky before then, and that we’d end up with natural conception, rather than going through the physical, emotional, and financial journey of another cycle of IVF. I also knew that I wanted another baby, and that would happen however it was meant to. 

How the pandemic has impacted fertility treatments

We were scheduled to begin fertility testing in March 2020, with treatment starting in April. As I’m sure you guessed, that was immediately halted with the closing of most fertility offices and the pausing of all new treatment cycles with the influx of COVID-19 cases and concerns. Having my treatment (and my timeline) be paused indefinitely with the continuing anxiety and stress of the pandemic caused my IBD symptoms to increase – something that then caused me more anxiety and stress about its impact on my IVF plan if and when I was able to reschedule treatment. 

After an exceptionally long few months, my doctor’s office re-connected with me about getting my appointments scheduled. My IBD while not flaring, was not perfectly calm either, and that’s such an important part to me about preparing for pregnancy, so we gave it a little more time. FINALLY, this month (September), I began the treatment protocol I should’ve started five months earlier. Our daughter Brooklyn just turned 16 months old.

Today you’ll find me managing IVF medication injections around business calls, my Remicade infusion schedule, chasing a toddler and being stuck inside my home around the clock. It’s HARD, and exhausting, but it’s the only way I know how to make my hopes come true. 

Tips for handling IBD + IVF

  1. Communication with your partner is critical. From parenting responsibilities to COVID-19 precautions to childcare to work stressors to fertility treatment planning and execution – there is an entire machine full of decisions and emotions that are part of every single day, and not being on the same page as your partner can have devastating effects. My recommendation: schedule time once a week on your calendar after bedtime to talk. Keep a list running during the week of things to add to the conversation. Ask all your questions to each other then, when you can focus and talk and connect. You’re a team, and it’s important in this season to work together. 
  1. Mental health is just as important as physical health. When managing IBD + ANYTHING, let alone motherhood, and a pandemic, and fertility treatment, taking time to check in with your mental health and care for yourself is imperative. Each of these things come with so many feelings, and burying them all will only make it harder to deal (& keep your IBD in check!) I personally recommend working with a counselor, taking time to journal or meditate or center yourself, and ensure you’re checking in with your own needs regularly. 
  1. Social Media Strategy – During the pandemic, I think we’ve all admitted to more screen time than usual. I know firsthand that the amount of pregnancy announcements, gender reveals, new baby births & seeing families with multiple kiddos can cause feelings of guilt, frustration, jealousy, anger, etc. Social media can make things feel extra difficult for those struggling to get pregnant, undergoing fertility treatments AND managing something like IBD. Here’s what I recommend. The beauty of social media is that we can choose what we do and don’t see while we scroll. This is a perfect time to click “hide” or “unfollow” on any hashtags or accounts that make you feel sad or icky. That’s not to say you don’t love your neighbor/friend/co-worker, but in my opinion you also don’t have to constantly watch their highlight reel. On the flipside, utilize social media to connect with your TRIBE. Whether that’s other IBD and IVF warriors, others struggling with infertility, etc – there’s so much more space for online communities now than there ever has been before. If you’re having difficulty finding and connecting with others, please DM me and I’m happy to make some suggestions! Also, please know that whatever you’re feeling during this experience and this season is so valid, and you’re not alone!  
  1. Give yourself grace. There will be days when you feel inadequate – as a parent, as a spouse, as a patient – these moments don’t define you. You’re juggling so much, it’s so important to know that you’re doing the best you can, even if that looks different than it used to or different than you’d like it to. 

If my story resonated with you, or you’d like to connect, please reach out! You can find me on Instagram personally as @amanda.osowski and professionally as @heartfeltbeginnings.  

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.

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

Crohn’s and COVID: Hear one IBD mom’s experience battling both

Imagine having a fever for 31 days along with debilitating fatigue, a scratchy throat, cough, and trouble breathing. That was the case for Jessica I., age 34, of St. Louis. She is a COVID survivor, a Crohn’s warrior on immunosuppressant medications, a wife, a mom to two little ones, and an attorney.

Hindsight is 20-20 and of course we know a bit more about COVID-19 now than we did when quarantine and chaos ensued in mid-March, but let me take you back to how this all went down for Jessica and her family. DSC00747

Her daughters, age 4 and 19 months go to the same preschool and daycare. Their last day was March 11th. Jessica received an email from the director of the school saying a record number of teachers and students were out with the flu and strep. Except later it was determined the sickness going around the school was COVID-19. Two teachers landed in the ICU and multiple kids and parents tested positive in her older daughter’s class.

How the symptoms presented

“The first change was extreme fatigue and a scratchy throat, almost like cotton balls were stuck in my throat. Two days later I started with a low-grade fever. I felt pretty lousy for three days—fever, chills, and aches,” says Jessica. “I had one day where I felt better (March 26), but the following day I felt worse than before with a much higher fever and I had a dry cough. I felt constriction in my chest with every breath I took.”

Jessica’s husband was proactive and had ordered the family a pulse ox back in February, so she was able to monitor her oxygenation throughout her illness. She never dipped below 92, but the chills, painful aches, headaches, and fever from 99-101 stayed with her for over a month.

Still not 100%

“Though I no longer have a fever, I still have good days and bad days. I still have chills, aches, and extreme fatigue. It’s way more manageable, but I’m definitely not 100%,” says Jessica. “Luckily, I did not have the smell and taste issues, but because I felt so awful, I’ve lost 25 pounds.” 20190921_161434

Jessica is grateful her Crohn’s disease has not caused her problems in recent weeks. Diagnosed at age 12, IBD has been a part of her life for as long as she can remember.

She had two bad flares during her second pregnancy and most recently an eight-month flare last year. When her Remicade infusion was due this month, her GI was adamant she stay on schedule since she no longer had a fever. Jessica was terrified about getting a biologic on the heels of having COVID-19, so she chose to extend her medication schedule by one week. Her worries were justified.

“In 2006, I got my Remicade when I had mono (hadn’t known at the time) and got encephalitis and had to be in a UK hospital in the ICU for a month. I lost my ability to talk. I almost died. My GI doctor knows of this history, but insisted that I needed my Remicade because of my history of getting flares the last few years.”

Despite her apprehension, Jessica trusted her long-time physician’s recommendations and stayed on her Remicade and Imuran.

Balancing motherhood while fighting COVID-19

The first 12 days, Jessica isolated herself from her family in her master bedroom. Her husband worked a full-time job from home, while taking care of both girls on his own. Once Jessica’s fever persisted after two weeks, they decided as a family to have her come out of isolation because the burden was nearly impossible for her husband to continue to take on. Igielnik-8

“We knew almost for sure that my children were asymptomatic and gave me COVID-19. The next two weeks anytime I was out of my room I wore a mask and gloves. I didn’t make any food. This was so hard because I was still extremely sick and was just supervising play and TV watching for my girls. To this day, my husband and I are still sleeping in different rooms and not hugging and I’m not going anywhere near his food.”

Jessica’s husband is an avid news consumer and was following everything that was happening in China. He started to stockpile food and wipes back in January. Friends thought he was overreacting. His grandparents are Holocaust survivors. Jessica credits his “alertness” to that.

What Jessica wants people to know

Even though Jessica was able to fight the illness without being hospitalized, she says if we weren’t in the middle of a pandemic, she would have gone to the hospital in “normal” times.

“Mild COVID isn’t mild COVID. What I had was considered mild and I was so sick for so long…and I’m still not feeling completely better. I think people would change their mind about the severity of this if they knew someone who had COVID-19 or they themselves experienced it.”

To this day, Jessica still has chest pain and backaches. Her care team believe she has inflammation in her lungs because she was sick for so long.

 

 

My family calls me “Sergeant COVID”: Navigating life while being high-risk, as the world reopens

I’m preparing to feel like the bad guy in the months ahead. My family has already jokingly called me “Sergeant COVID”.  As an IBD mom who is immunocompromised, the decisions I make as the world starts to reopen may step on some toes. I’ve always been one to struggle with confrontation and take it upon myself to be a people-pleaser, which isn’t always a good thing. But this. This is different. I know there will be times I need to speak up and say no.

While out on a walk with my family in our neighborhood this week, we approached a house with two moms sitting side by side, a play date was going down.

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Daily walks and getting fresh air help to keep us sane!

Several kids ran around the yard. An SUV parked next to the two moms with their thermoses. I turned to my husband when I spotted them and said, “well there’s a playdate.” He laughed and said, “Are you not going to allow Reid and Sophia to see anyone for a year?”

Well, that’s a good question my friends. Who knows what these next few months will bring, and as someone who is immunocompromised from my biologic medication, that may need to be the reality if things don’t make a drastic turnaround for the better as far as number of cases and deaths.

I want to be together with my friends and family as much as the next person

I also understand the risk associated with getting together with people who have not taken social distancing and quarantine as strictly as my family has. I haven’t stayed in my house and neighborhood since March 12th and only ventured to the grocery store and for bloodwork once, to throw those efforts out the window. I haven’t cooked every meal for my family and refrained from ordering take out for nothing.

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Trying lots of new recipes has been a great distraction.

The moment I let my guard down before I feel comfortable, the moment I put myself or my family at risk.

As someone who’s worried about sickness from germs and flare-ups for years, I see this pandemic through a different lens than many. Anyone in the IBD community who is on immunosuppressive medication has a different perspective. I’m already anxious about having to justify my decisions to stay home as life slowly starts getting back to a new normal for everyone. But until I feel safe, we’ll be taking all the precautions.

I wonder just as much as the next person in the chronic illness community how to navigate these difficult conversations with well-meaning and otherwise “healthy” friends and family. When I hear about people getting together indoors, going for walks with people outside their nuclear family, having people over for BBQs, even being essential workers (which I know can’t be helped)—I know the date I’ll see those friends and family just gets pushed further away.

When things calm down, the first people my kids and I will see indoors, will be my parents, who have practiced strict social distancing and haven’t ventured out for anything but groceries. If they were out and about and seeing others, that wouldn’t be the case.

We all need to do what we feel comfortable with and worry less about hurting someone’s feelings or getting a little backlash for our decisions. Luckily, my husband Bobby has been extremely understanding and supportive and backs me up on how I feel. IMG-1529

The best thing we can do is over-communicate. Talk openly about life as someone who is immunocompromised and what recommendations and parameters around social distancing your care team has shared with you. By talking about what your doctor has told you, it validates your worries and fears.

It’s ok to feel disappointed and frustrated. Not everyone has been or will take social distancing and quarantining as seriously as you do. Focus on what you can control—and that is your actions and that of your families. You are doing all that you can to stay safe, and that’s what matters. I’ve had moments where I was physically shaking and so overwhelmed by emotions throughout these past few weeks—because of the actions of others. You see it on social media—the families getting together with several people for Easter, and birthdays, and Mother’s Day. People taking trips on airplanes. Social distancing block parties where people are all standing super close to one another. It’s truly mind-boggling and hard not be judgmental from my vantage point. If you need to cut down on social media or cut ties temporarily with those who you believe are acting irresponsibility, do what you need to do for your mental health and well-being.

We had originally planned to drop off my mother-in-law’s Mother’s Day gifts on the front porch and stay in our car, but my in-laws set up patio furniture on opposite sides of their large patio and we were able to hang out outside 20+ feet apart to exchange presents. It was nice to finally see one another from afar vs. through a window.

Constantly keep your finger on the pulse of research. There are so many physicians in the IBD community truthfully working around the clock to bring patients like us the latest and newest information about COVID-19 as it relates to Crohn’s and ulcerative colitis. Educate yourself on factual, research-based information. Follow top GI doctors on Twitter. Stay in touch with your care team and don’t hesitate to ask questions. Tune in for Facebook Lives and Twitter Chats from IBD Social Circle, IBD Moms, and many other great groups.

Lean on the patient community. Prior to the pandemic, life with a chronic illness already made us feel a bit like outsiders. IMG-1409Now more than ever, we’re being labeled as the “sickly”, the “disposable”, the “weak”, the list goes on. COVID-19 is not JUST about the elderly and immunocompromised, this is about everyone. As patients we have a unique perspective and understanding about the struggles we face daily and what it’s like to go through this challenging time. Connect with fellow patients online who get your reality, your emotion, and the whirlwind of going up against this invisible bogeyman. To refrain from social media, you can download awesome free apps like Gali Health and IBD Healthline, with helpful articles, community conversations, and chats by patients, for patients.

Your FOMO is nothing new. Chances are throughout your patient journey you’ve had to miss out on plans or cancel last minute. Will it be hard when the whole family or your group of friends are getting together, and you tell them you won’t be joining for the big “post-quarantine” reunion? YES. Of course. At the same time, you’ll probably feel comforted not having to worry if so and so is asymptomatic and waiting on pins and needles for two weeks to see if you’re in the clear.

I look so forward to the day when my family and I can reunite with those we love and miss dearly. I just ask that people have understanding, patience, and empathy for those like myself, who will be very fearful to return to life as we used to know it…if that will ever be. Maybe put on the kid gloves and imagine walking in our shoes before you say something that you can never take back.

IBD mom offers up 5 tips for productively working from home

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

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

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

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

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

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

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

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

 

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

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

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

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

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

Navigating health issues brought on by my IBD

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

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

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

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

Seeing the beauty through the struggle

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

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

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

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

 

 

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

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

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

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

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

Seeing blood when my baby was six months old

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

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

Dealing with the diagnosis

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

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

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

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

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

What I want to say to parents of children with IBD

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

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

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

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

E06A0940

Jadyn and her little sister

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

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

Anna’s Instagram: @grit.to.grace

From IVF to surrogacy: This IBD mom’s resilient journey

IBD and surrogacy. Those are loaded words. Both evoke emotions and opinions for unique reasons. For Jessie Magaro, 34 of Atlanta, the decision came after the unfathomable struggles she had with her Crohn’s during pregnancy and after. To provide you with the backstory, Jessie was diagnosed with Crohn’s and endometriosis when she was 15. She underwent an elective surgery her senior year of high school for her Crohn’s that put her into surgical remission for 15 years. IMG_7818

Jessie got married in 2016. While she was loving every second of newlywed life, she started feeling endometriosis pains. Less than a year after tying the knot, her doctor discovered her fallopian tubes were blocked. It was unclear if the blockage was due solely to endometriosis, or if it was a result of scar tissue from her bowel resection. Either way, IVF seemed to be the only option to get pregnant, and her fallopian tubes would need to be removed for that to be successful. In November 2017, Jessie underwent the surgery. When she woke up, she thought she would be stripped of the ability to conceive a baby naturally. But, her surgeon told her they were able to save and repair one of her tubes.

Jessie ended up getting pregnant right away, but unfortunately had an ectopic pregnancy that ended up severely rupturing her fallopian tube. During emergency surgery to remove the remaining tube, it was determined her endometriosis was severe and IVF needed to happen sooner than later. I had the chance to interview Jessie about her harrowing experience to bring a baby into this world, while living with IBD and endometriosis. IMG_7820

NH: How did IVF impact your IBD?

JM: “The moment we started IVF, I felt a shift in my body. A storm was brewing, and I could feel it. My completely dormant Crohn’s appeared to be waking up, but I didn’t want to believe it. I battled through the IVF process while experiencing my first flare in a decade in a half. The Reproductive Endocrinologist and GI were miffed. No one could say if this was an isolated reaction to the hormones, or if I was truly experiencing an active flare. After a lot of back and forth, and hard conversations with medical professionals and our families, we decided to proceed with implanting an embryo. The thought process was that most women tend to do better in pregnancy with Crohn’s, if they had been in remission prior. The hope was that this “flare” was an isolated incident from the IVF drugs/hormones, and that everything would calm down once I was pregnant. It was a risk, but one we decided we were willing to take. After a short round of prednisone, the flare subsided, and we proceeded with the transfer.”

NH: You now have a beautiful, healthy 13-month-old daughter to show for it. What was your pregnancy like?

JM: “My pregnancy was a terrifying whirlwind of trying to manage an awful flare while keeping the baby safe. IMG_7821I developed a new manifestation of the disease I never had before: Perianal Crohn’s. Not a pleasant situation and one that is very difficult to treat/manage while pregnant. Things got so bad at one point, I had to have surgery to drain an abscess and place a seton to help a fistula heal. No one wants to have surgery pregnant. It was one of the scariest moments of my life. The first trimester was spent hoping and praying the baby would make it with all the turmoil going on in my abdomen. The second trimester was spent hoping and praying we could keep her in there long enough to be viable outside of the womb. The third trimester was spent in an unbearable amount of pain fighting the urge to take the prescribed pain pills and being so scared about how the increased biologics, steroids and other new drugs being introduced into my system might affect her.”

NH: You must have been going through so many emotional struggles at this time, on top of all the physical.

JM: “The level of anguish and guilt I felt was unimaginable. I already felt like I was failing at my motherly duty to protect her and keep her safe. By 32 weeks it was clear I was rapidly deteriorating, and we had exhausted all treatment possibilities deemed “safe” while pregnant. I desperately needed more aggressive treatment, and that couldn’t happen until she was out. IMG_7823With the newly manifested, aggressive, perianal disease, a vaginal birth was out of the question. I held on until 36 weeks and on New Year’s Eve of 2018 we welcomed our baby girl. We were so incredibly relieved she was ok, and the focus quickly shifted to how not ok mom was.”

NH: As a fellow IBD mom, we all know how challenging the postpartum time is, along with chronic illness. How did you navigate that?

JM: “The first five months of her life were spent in and out of the hospital non-stop. At one point we were traveling down to the Mayo Clinic in Jacksonville for weeks at a time (without her) for testing and treatment. Leaving her the first few months was by far the hardest, most gut-wrenching thing I’ve ever experienced. I would sit in the hotel bathtub staring at the IV in my arm sobbing. The physical and emotional pain was unbearable. I remember agonizing over the decision to start the new meds, or continue breastfeeding her, and the doctor saying to me “you NEED these meds, Jessie. You HAVE to get better. She needs you to get better more than she needs you to breastfeed her right now …” cue the waterfall of tears again.”

NH: You started to turn the corner when your daughter was six months old. Tell us about that.

JM: “The pain had begun to subside enough for me to take care of her without help, I could finally leave the house and I was starting to feel a little more like myself again. I was, and still am a year later, in an active flare, but we’re making progress. IMG_7824After talking  to many medical professionals, we decided it was not safe for me to carry another child. We still don’t know if it was the IVF drugs/hormones that caused the flare going into pregnancy, or if hormones in general and my Crohn’s disease just don’t mix, but we’re not willing to put myself, or another baby at risk like that again.”

NH: I can only imagine what a difficult and complicated decision this has been for you and your husband.

JM: “This was not a decision that was made easily or lightly. As we go through the motions of finding a surrogate to carry baby number two, my days are filled with a roller coaster of emotions. We know we want another child, but at what price? I can’t take care of my family if I am unwell. If carrying another child myself leads me to be unwell again … is it worth it? Or, do I trust someone else, a safer vessel, to carry a precious sibling for our daughter. We’ve chosen to pursue a safer vessel. I am so unbelievably grateful that surrogacy is an option for us and will allow us to continue growing our family while keeping me safe.”

This story is not meant to scare anyone with IBD who is looking to start a family. Make sure you are in complete, clinical remission before you conceive, and know it is completely possible to have a happy, healthy pregnancy with IBD.