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

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

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

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

Seeing blood when my baby was six months old

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

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

Dealing with the diagnosis

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

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

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

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

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

What I want to say to parents of children with IBD

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

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

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

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

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Jadyn and her little sister

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

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

Anna’s Instagram: @grit.to.grace

Real talk from an immune compromised 30-something during the COVID-19 pandemic

You can think of this as a Public Service Announcement for the immune compromised. Like many of my peers in the chronic illness community, I may appear healthy on the exterior, but the biologic medication I depend on to manage my Crohn’s disease, knocks out my immune system. In my family alone, so many face the same reality:

-my 30-year-old cousin whose had two heart transplants and a kidney transplant

-my cousin’s 2.5-year-old son battling Leukemia

-my cousin’s wife who has Crohn’s and is on Remicade

-my cousin who lives with Ehlers-Danlos Syndrome among other chronic conditions

I’ve been part of the immune-compromised population since I was 24 years old. Over the past 12 years, never did I dream of the reality we’re currently living in. When I first heard about Coronavirus, I wasn’t all that alarmed. As the conversations and situation continues to become more serious, I’m getting more anxious and concerned.

Here are the latest recommendations shared by The Lancet as this relates to the IBD population. I found these guidelines helpful in drowning out the noise of all the information being thrown our way.

Potential risk factors for infection

  • Patients with IBD on immunosuppressive agents
  • Patients with active IBD and malnutrition
  • Elderly people with IBD
  • IBD patients who frequent medical clinics
  • IBD patients with underlying health conditions, such as hypertension and diabetes
  • Patients with IBD who are pregnant

Medication for patients with IBD

  • Continue current treatment if your disease is stable, and contact your doctor for suitable medicine if you’re flaring.
  • Use mesalamine as prescribed, this should not increase the risk of infection.
  • Corticosteroid use can be continued, but be cautious of side effects.
  • A new prescription of immunosuppressant or an increase in dosage is not recommended in epidemic areas.
  • Use of biologics, such as the anti-TNF’s infliximab (Remicade) and adalimumab (Humira) should be continued.
  • If Remicade infusion is not accessible, switching to a Humira injection is encouraged.
  • Vedolizumab (ENTYVIO) can be continued due to the specificity of the drug for the intestine.
  • Ustenkinumab (Stelara) can be continued, but starting this requires infusion center visits and is not encouraged.
  • Enteral nutrition might be used if biologics are not accessible.
  • Tofacitinib (Xeljanz) should not be newly prescribed unless there are no other alternatives.

Surgery and endoscopy

  • Postpone elective surgery and endoscopy. (I’ve heard of many  centers and hospitals delaying until June at this point.)
  • Screening for COVID-19 (completed blood count, IgM or IgG, nucleic acid detection, and chest CT needed before emergency surgery.

Patients with IBD and fever

  • Contact your GI about visiting an outpatient clinic. Consult with your physician about possibly suspending the use of immunosuppressant and biologic agents and follow appropriate guidance if COVID-19 can’t be ruled out.

While the unknown is scary—as a chronic illness community we need to recognize how well-equipped we are mentally and emotionally to live life during these uncertain and uneasy times. According to the National Health Council, 133 million Americans live with incurable or chronic diseases, many of which are treated with medications that make us susceptible to illness.

It can be unnerving to see peers downplay the severity of the situation and making light of the fact they have nothing to worry about. If you have a friend or family member who’s immune compromised or a loved one over age 60, you have reason to be empathetic. Chances are you know many people who fall in these categories. Going against the recommendation and living your life like nothing is going on right now, puts people like me and so many others in jeopardy. It’s irresponsible and says a great deal about your character. CCFA social distance

To those of us in the high-risk category, this quarantining and social distancing is more than an inconvenience or a change in our plans. We know that if we happen to come down with COVID-19, our bodies may not be able to fight it.

The healthy are getting a glimpse into what it feels like to live with a disease that can blindside you and flip your world upside down at any moment. After years of juggling all the variables and the what-ifs, we know how to protect ourselves. We know living in fear takes away from our joy. Thanksgiving2019

Rather than feel like we’re less than, we can continue to choose to see the beauty of what is right in front of us within our homes, with those who matter most.

Rather than feel like we’re goners, we can follow our care team’s recommendations, pay attention to facts over fake news, and stay on our medication. It’s believed the threat of untreated IBD is a bigger concern right now, and if you flare and need steroids, your immune system will take even more of a hit. If you are flaring and have a fever, physicians are now ruling COVID-19 out first.

Rather than waiting for the worst, we can be proactive and use the tools in our arsenal to stay as healthy as possible and use trusted resources to guide our decision making. Wash your hands even more than you’re used to, spend time outside in your yard, never share food or drink, change your clothes if you’ve left the house.

Rather than glue ourselves to the TV or scroll through our phones, we can take time for ourselves and make a point to make self-care a priority. Put your phone in another room, turn up the tunes and have a dance party with your kids. You’ll be amazed at what a stress reliever that is! Read a good book. Organize your closet. Try out a new recipe or bake something yummy.

Rather than cower in the corner, we can continue to advocate and be a voice for the voiceless in our community to educate and inform the rest of the population about what it means to be immune compromised by connecting over social media, Facetime, Marco Polo, emailing and texting.

Here are some helpful resources to check out:

Crohn’s and Colitis Foundation

Coronavirus and IBD Reporting Registry

International Organization for the Study of Inflammatory Bowel Disease

Coronavirus Resource and Planning for IBD Patients (Blog written by IBD advocate Jessica Caron)

Coronavirus Resources for People with IBD (Blog/Podcast created by IBD Advocate Amber Tresca)

USA Today article: The best thing everyday Americans can do to fight coronavirus? #StayHome, save lives

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

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

The role of vitamin D with disease activity and inflammation

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

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

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

The importance of measuring vitamin D levels 

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

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

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

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

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

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

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

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

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

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

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

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Hospitalized a week later with a bowel obstruction.

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

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

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

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

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

Finding faith through the storm that is IBD

Prior to falling ill two years ago and finally receiving a Crohn’s disease diagnosis in December 2019, 33-year-old Kolby Noble, kolby5 of Maryland, never knew how much her strong faith would help her through the ups and downs of chronic illness. As a wife, mom of three, and an educator, Kolby shares a heartfelt, eye-opening piece that beautifully captures how faith correlates to the daily battles we face as people with IBD. 

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

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

It’s been two years since I first thought something was wrong with my health. For two years the wind and the waves have strengthened until, like the disciples, I found myself in the midst of a powerful storm. kolby4I was as sick as I’d ever been in my life, and couldn’t figure out why I wasn’t getting better. In December 2019, I received confirmation that I had Crohn’s Disease.  I was afraid. But through the wind and the waves, I heard Him say “Take heart; it is I. Do not be afraid.”

Back in the boat with Jesus that day was a man named Peter. Peter saw Jesus on the water and when Jesus called to Peter to step out of the boat and come to Him, Peter didn’t hesitate. In the midst of the storm Peter climbed out of the boat and started walking to his Savior. kolby3Soon, though, Peter took his eyes off of Jesus and focused instead on the wind and the waves and began to sink. He cried out “Lord, save me!” (Matthew 14:30) and Jesus instantly reached out His hand to catch Peter. When He pulled Peter from the water Jesus simply asked “Why did you doubt?” They returned to the boat and the wind and waves cease.

Much like Peter, I knew Jesus before the storm of Crohn’s Disease developed. I had witnessed His miracles in my life, just as Peter had before the storm arose on the sea that day. When I received my Crohn’s disease  diagnosis, I heard Jesus tell me not to be afraid. As I stepped out to meet Him in the storm for comfort it wasn’t long before I took my eyes off of Him and focused instead on the wind and the waves. It’s easy to focus on feeling sick, being in pain, being too exhausted to get up each day, or not having the energy to take care of your family. I was taking medication multiple times a day just to function, to somehow get through each work each day. kolby2 I found myself focusing on all the tests and doctor’s appointments I had to go to, and the infusions I’ll have to take for the rest of my life to maintain any sense of health I used to know. I focused on the unpredictability that is Crohn’s, and not on the predictable, steadfast love that can only be found in our Savior.

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

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

 

Love and IBD: What I wish I would have known

Love doesn’t always come easy. Especially when you have a chronic illness like Crohn’s disease. Dating, relationships and finding “the one” becomes a bit more complicated when your health isn’t on par with that of your peers. Before I met my husband Bobby, I had several eye-opening experiences that left me feeling unlovable and unworthy.

When I was diagnosed with Crohn’s in the emergency room two months after college graduation in 2005 and hospitalized for eight days, my boyfriend never visited and broke up with me over the phone the day I got home. Prior to my diagnosis we were head over heels in love and talked about the future.

When I was hospitalized with an abscess in my small intestine that was the size of a tennis ball over Fourth of July weekend and on the brink of surgery in 2008, my boyfriend of seven months never visited and told me gas prices were too much (for a 3 hour drive) and told me he preferred to go fishing.

When I was about to jump in the shower for a first date in 2009, I fell to my knees in my bathroom from excruciating pain and had to text the guy and tell him my Crohn’s was flaring and that I was headed to the hospital. He laughed at me and told me it was comical that I used that excuse and should just admit I didn’t want to see him. I was hospitalized with a bowel obstruction that night. Never heard from him again.

These were poignant moments in my 20’s that stick with me to this day. I look at those experiences now as a blessing of course, but hindsight is 20-20. When you’re in the thick of taking on IBD and trying to find someone to spend your life with, these struggles can feel overwhelming and extremely daunting. Not everyone is cut out to be a caretaker, and that’s ok—but if you live with a chronic illness like me, it’s imperative you find someone with a nurturing heart, a patient personality, and a comforting way about them.

bobbyWhen you fall in love with IBD, there’s an extra layer of complexity, trust, dependency, and appreciation. There’s no telling what the next hour will bring. You need to be flexible. You need to be understanding that plans may not go as expected. You need to trust that when the next flare up strikes that you won’t be on your own and that your partner will be there every step of the way.

Imagine doing a trust fall. You need to count on your person to ALWAYS be there to catch you when they least expect it. Bobby3You need to believe that when the going gets tough you won’t be deserted; you won’t be made to feel as a burden. You need to trust that your partner sees you as much more than your disease.

Love and IBD isn’t always sunshine and rainbows, but that’s the case with every love story. It’s navigating unknown waters and knowing that just because you go under for a little while, doesn’t mean you won’t be floating in the calm soon. It’s being vulnerable with the fact that your body will continually let you down, but it’s also capable of surprising you, too. It’s knowing when to ask for help and not being scared to communicate your needs. It’s making sure your partner knows how much you appreciate all that they do, even if they don’t feel like they’re going above and beyond. It’s the comfort of knowing that any minute of the day, you can tell your partner you’re unwell and everything else going on becomes background noise.

If you’re reading this and you haven’t found your person or if you’re unsure about whether your significant other is meant to be, think about the type of person you want alongside you as your #1 confidante for everything in life, including your disease.

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If you feel like a burden, if you’re made to feel like your disease is a joke, if you feel like you’re ghosted anytime your health goes awry, take all those feelings as red flags. Sure, the way some of my ex’s treated me when it came to my Crohn’s was extremely disheartening, but at the same time those flare ups were the truth serum I needed to see people’s true colors. Use this to your advantage.

When you find the person who genuinely chooses to stay, to be your rock, to be your sounding board, that’s when you know you’re where you’re meant to be. IBD causes us to be vulnerable, but it also opens our eyes to the true character of others and helps guide our way for finding love that’s meant to last.

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

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

Think about how you narrate and select what to post, others do the same. That selfie you posted with your husband, if only your followers knew you guys were having words hours before. That perfect photo of your child laughing, let’s not forget about the 50 takes and the tantrum that occurred before and after it. Remember that the photos you see capture a moment. They are often edited with filters, captions, you name it. Even though we know everyone crafts their content the same, we’re all so quick to envision how much better or how “perfect” the lives of those in our “inner” circle are. All comparison does is rob of us joy. camilo-jimenez-qZenO_gQ7QA-unsplash

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

Stop chasing the “likes” and the followers. It’s so easy to get caught up in the numbers. How many people liked this post, how many followers does he have, how did she get so many followers? sara-kurfess-6lcT2kRPvnI-unsplashIn a world where we all want immediate gratification, think about how it feels when you share something and there are crickets on the other end. Use your social media channels as a platform to share what you care about and what matters most to you, rather than trying to think about what others want to see.

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

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

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Hospitalized with a bowel obstruction the year of my surgery.

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

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

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

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.

Chronic Illness & Finances: 5 Steps for Improving Your Financial Health

For most of us, the words “personal finance” feel scary. Scary in the way IBD was right after we were diagnosed. But as we learned more, those butterflies lessened. This is also true for money and personal finance. The feeling that makes us want to turn away because it seems too complicated, too intense, too painful, and too scary go away with a bit of knowledge and a few simple habits.

This is where 27-year-old Annelise Bretthauer, CFP®, of Oregon comes in. Annelise was diagnosed with Crohn’s in March 2017. Just like all of us, she is a lot more than just a patient. Annelise is newly married and she’s a financial planner. Get this—her professional focus is to help families manage chronic disease! How perfect is that. 190809_Annelise_M_0211Her goal for you today is to walk away feeling better equipped when it comes to money saving know-how and a bit more empowered. I’ll let her take it away…

The keys to financial stability are a dash of planning, a positive money mindset and a system that helps you stick to positive habits, which allow you to achieve your goals. Creating financial stability is an impactful way to reduce your stress and save energy for other things that fill your healing cup. Let’s jump in!

Step #1: Take a few moments to ask yourself, what are my closely held beliefs about money? Are these beliefs limiting my progress?

A couple examples are: I don’t understand financial things, I am not good with money, money is evil, I am only secure when I have lots of money, money is scary or maybe, I love money, money flows easily to me. stil--837JygbCJo-unsplashThere is no right or wrong. What is coming up for you? It doesn’t need to make perfect sense, it’s just to get your mind thinking about how you view money. Share these sentiments in a journal or planner.

Step #2: Write yourself a positive money and health affirmation on a sticky note. 

This looks different for everyone. Most of us have negative beliefs about money, but some of us don’t! If that’s the case for you, that’s okay too. Design this affirmation to help you build wealth in a way that inspires you. Put it on your mirror and say it out loud right before you brush your teeth each morning and evening.

A couple examples are: I am worthy of prosperity, I have the power to protect my health while earning plenty of money, each day I become healthier and wealthier.

Step #3: Develop a simple spending plan. 

The simplest way to do this is to take out a piece of paper or a note on your phone, write down how much money you take home, subtract how much you want/can save and what’s left can be allocated to your expenses. The key is to set up an automatic transfer to your savings account on the day you get paid, so you don’t have to think about it.

Step #4 (a piggyback on #3): Create a savings account that is just for managing your health and automate your savings to it each month on the day you get paid. michael-longmire-lhltMGdohc8-unsplash

This can be a game changer. When money is already set aside for your health, it helps alleviate the energy and stress that comes with the cost of managing our IBD.

Step #5: Create a habit of Financial Planning Saturday. And a system to help you stick to it!

This is a simple weekly 10-minute check-in with yourself (or your partner) to look at your bank accounts and check your credit card balance. Decide how you will adjust next week if you need to.

Ask yourself, how will I create a system that makes it easy for me to remember to do it? For example, if you always do yoga on Saturday morning, make it a routine to do your planning meeting right after. Or set an alarm on your phone as a reminder.

Bonus Tip: Set yourself 6-month and 12-month health and wealth goals. Write it down in a planner or journal, then take it out each Financial Planning Saturday and check your progress. Give yourself grace and commend yourself for showing up. If you keep showing up, you will meet your goals, even if it takes longer than you’d like. kyle-glenn-_AR74EoWdy0-unsplash

If you don’t think of yourself as a money person. Let’s change that! All people are money people. Financial planning is not just for those who have already built wealth. It’s for all of us. As chronic disease IBD warriors, you have figured out so much already. Offer yourself permission to feel the fear and do it anyways. Let’s make a plan and step into the driver’s seat of our health and our wealth.

If this post sparked your curiosity, stay tuned for the launch of www.Kauviara.com. Annelise is working on courses (which will be free as a Lights, Camera, Crohn’s reader) and a Financial Guide Planner.190809_Annelise_M_0108

You can follow Annelise here:

Instagram: @annelisebretthauer

Facebook: Annelise Bretthauer

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

Let me tell you how small a bathroom feels when you’re on the toilet, your crawling baby is at your feet going after the garbage can and your toddler is pulling at the toilet paper. This has been the scene of my life, multiple times a day, over the past year. Sophia turns one tomorrow (Jan 14!). mom3I feel like we blinked and her first year passed by. That being said, having a baby and a two-year-old, while being a stay-at-home mom and freelancer, who happens to have Crohn’s disease, has its challenges.

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

Much like navigating chronic illness, with motherhood, you have moments where you feel you’ve found your groove, and then suddenly something happens to prove otherwise. But, that’s the beauty of it. The hard times are temporary and then the beautiful, fill- your-heart with overwhelming joy and happy tears in your eyes moments happen when you least expect it. mom2

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

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

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

momof2blog2Through motherhood I’ve learned to soak everything in, because you blink, and another year or milestone goes by.

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

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

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

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Photo credit: Alexandria Mooney Photography

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