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.

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

The new year and new decade have almost everyone reflecting on the last 10 years of their life, looking back at then and now, and anxiously excited to see what the next 10 years will bring. Framing life into decades is interesting, especially when it comes to chronic illness. I wasn’t diagnosed with Crohn’s until age 21, so I can’t speak to what it’s like to live with IBD as a child or a teen. What I can speak to is what it’s like to live with a chronic illness in your 20s and in your 30s and how your lifestyle, your expectations for yourself and for others, shifts as you age. natalie20s2

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

The 20s:

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

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

Dated and found love.

Enjoyed a fun social life with friends.

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

Adopted my dog, Hamilton.

The 30s:

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

Moved to Missouri to follow love and got married. engagement

Got pregnant and had two babies.

Fewer social hang outs and more family time.

This may just look like a list, but when you live with IBD these life changing milestones and moments have different meaning and carry different weight. When I was diagnosed at age 21, it was before I landed my first TV job. I had just graduated college and spent years interning for free, worked four nights a week on the college TV station…for free, only to be blindsided with a disease that made me wonder if all my hard work was for nothing. At 21 I wasn’t sure if I would ever find a man willing to stick by my side through the ups and downs of chronic illness or if I was worthy of a long-term relationship. At 21, I moved eight hours away from all friends and family, three months after being diagnosed, while on 22 pills a day, to follow my dream of being a journalist. There was great responsibility in living on my own, taking my medications and being a compliant patient, while the rest of my peers’ greatest worry was what going out shirt they were going to wear to the bar that night. natalie20s

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

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

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

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

blog2Fatigue from motherhood when you have a chronic illness can be mind-numbing and debilitating, but seeing your body create a life and then bring a baby into this world makes you feel a renewed sense of love for a body that you’ve been at odds with for years. IBD and motherhood has it’s worries and challenges, but at the end of the day, your children will be the greatest light in your life, and the most magical motivators of strength. There’s almost too much going on to worry about your own well-being, which is both a blessing and a curse!

natalieblog2Gone are the days of going out at 11 pm, now I rarely go out and when I do, I’m usually home before 10. There’s no pressure to stay out until bar close or take a shot. My friends are all grown women, many of them are moms, our priorities have shifted. Adult conversation over brunch or a glass of wine and some sushi or tapas is refreshing and rejuvenating. I openly communicate about my disease when asked and don’t shy away from the conversation like I once did.

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

Thrive with IBD: My latest podcast interview

Her name is Natalie. She was diagnosed with IBD at age 21. She has a blog. It may sound like I’m talking about myself, but I’m talking about a friend I’ve connected with online! Natalie Kelley (@plentyandwellwithnat) and I started following one another on Instagram several months back and came to realize how similar our patient journeys have been. Screen Shot 2019-12-28 at 1.36.32 PMShe has ulcerative colitis and I have Crohn’s. She is 24 and I’m 36. But, our lookout on life and our interest in bringing comfort and serving as a positive voice for the community is the same.

Being diagnosed at age 21 is a difficult time in life. You’re at a crossroads from being a kid to a young adult. You’re navigating the next chapter of life and looking to start your career. We relate on how IBD stopped us both in our tracks in that pivotal moment and how far we’ve both come since.

Natalie launched her podcast, Thrive with IBD, in 2017. Her hope is to end the stigma around chronic illness and show that you’re never alone in your struggles or experiences. As a wellness blogger and a holistic health coach, Natalie works tirelessly to educate others about navigating life, love, and everything in between, while living with IBD. Today (December 30th) you can check out her latest episode. She interviewed yours truly. When she asked me to be on her show, I was so honored, as I’ve admired her work from afar for a while.

We talked about what dating, marriage and being a mom is like with IBD. I am the first IBD mom she had on the show! Interestingly, Natalie’s mom was diagnosed with Crohn’s at age 16. DSC03601So not only does she have her own personal patient experience, but she’s been a part of a family unit who’s dealt with the ups and downs her whole life. It was emotional for me as an IBD mom, to hear firsthand from a 20-something about what it was like to not only grow up with a mom who has Crohn’s, but later be diagnosed with IBD herself.

Click here to check out the episode.

With nearly 40,000 Instagram followers, Natalie has quite the following. What always amazes me is how present and genuine she is. She responds to comments both publicly and privately, her content is well thought out and impactful.

“Each day I get to wake up and get to use my story to help other women with IBD. I get to connect with chronic illness warriors around the world. I get to use the pain and grief I’ve endured to help heal others’ pain and grief, even if just a little bit.”

Screen Shot 2019-12-28 at 1.37.22 PMIf you’re looking to follow someone who is sure to lift your spirits and make you feel empowered, she’s your girl. When I chatted with her on the phone, I told her how much I look up to her for her advocacy work, despite being 12 years older!

As we gear up for 2020, the start of a new decade, and a new year, it’s our hope that you focus on self-love and embrace who you are, despite your IBD. As Natalie says, “There are ebbs and flows in this journey of mine and I’ve learned to take them as they come. I’ve learned to soak up every second of the good moments and give myself grace during the hard ones. I’ve learned to stand up for myself, be my biggest advocate and put myself first.”

Natalie and I both say that if we were given the option to get rid of our IBD diagnosis that we wouldn’t. We both feel we were put on this path for a reason and that our diseases have shaped us into who we are today. I hope that if you’re reading this, and you’re newly diagnosed, knowing that brings you comfort and peace of mind. IBD is not your identity, it’s a part of you, but it’s not all of you. Natalie and I can assure you of that.

 

How art helps Kate take on her Crohn’s: Tips for unleashing your inner IBD artist

When 32-year-old Kate Schwarting of New York was diagnosed with Crohn’s disease in June 2009 she was less than surprised. The symptoms that had insidiously weaved their way into her life had finally reached a point where their impact on her daily life was undeniable. A colonoscopy confirmed it. headshot_schwartingAt the time she was diagnosed, Kate was immersed in her undergraduate studies that were divided between Geoscience and Studio Art and took on the role of caregiver for her mother. This week Kate shares how art has benefited her patient journey and offers up helpful ways you can incorporate art into your life, even if all you can draw are stick figures (like me!):

While in college, I was focused on understanding my passion for science and art. I was passionate about discovering the possibility for art to express the unseen, and build an emotional bridge for relating to complex scientific problems. But all of this was set against a backdrop of Crohn’s flares, fistulas, strictures, hospitalizations (for both myself and my mother), and doctor appointments.

These constant disruptions often left me feeling like I was struggling to move towards my goals, preserving my identity when it’s so easy for illness to be all consuming, and caused me to frequently reflect and reevaluate my relationship with the art and science that I studied.

How Crohn’s brought me closer to understanding the benefits of art

As a student involved with the arts, it was common for me to have a few spare art materials. Over the course of 10 years of dealing with Crohn’s, I had several flares that resulted in extended hospitalizations, periods where I was at home recovering, or as a caregiver for a parent that made me aware of how important it was to have spare materials with me.

Being sick and in the hospital, or even stuck at home away from your daily routine, is stressful and isolating at best. Having these tools allowed me to cope, escape, and create meaning. It gave me a sense of accomplishing something positive and tangible in a setting where a significant amount of time is spent anxiously waiting for results, procedures and to feel better. IMG_5852

Not only have I noticed how much it helps me to have this diversion, I have also noticed the impact it has on those around me. In situations that are emotionally heavy with the burden of illness, a brief conversation with another patient, nurse or doctor about art seems to uplift everyone’s mood and passing along this joy had an exponentially good effect on my own outlook.

How a flare inspired meaningful artwork 

During a flare in 2016 I began to investigate how to create meaningful artwork relating to both the microbiology and to my experiences with my own body. I was drawn to the microbiome. Trillions of bacteria exist in everyone through a symbiotic relationship in the digestive system. detail1 - Kate SchwartingThe microbiome is a hot spring of unanswered questions in relation to its role in IBD, as well as many other conditions. Applying the methods I have used in other projects, I researched the different types of bacteria and their shapes and used them to create a series of abstract drawings that relate to the digestive system and allow people to develop a sense of the complexity of the human body.

5 tips for incorporating art into your life

Create a pack of art supplies. Get a small sketch book, a pouch including a woodless pencil, travel sized watercolor palette and brush, assorted pens, and a ruler. Add to this whatever materials you prefer. 

Start simple. Use mindfulness to find inspiration around you, whether it’s a color, a pattern, or texture

Be mindful of self criticism! As put best by Bob Ross, Let happy accidents happen!

Experiment! Art at its core relies on the very basic act of creating and requires no prior artistic training to get started. It is a place to abandon judgement and focus on an exclusively human experience.

Share! I found it helped hold me to my goal of setting aside time to relax and create art by making an art related post once a day or every other day depending on how I felt to Instagram and also helped me find a supportive community during times where I was feeling the most isolated. I’d love to see what you create! Feel free to use the hashtag #chronicallycreative when sharing your work!

You can follow Kate on Instagram and Twitter at: @microbioscapes.

 

Loved one or friend have IBD? Read this before the holidays

The holiday season is upon us and with that comes family gatherings, social outings, and more food than anyone can handle. As someone who was diagnosed with Crohn’s disease more than 14 years ago, the holidays can still be complicated and stressful at times.

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Christmas 2013 with my family

If you’re reading this—and you have a family member or a friend with IBD, you’re in the right place. Chances are you may struggle with how to be supportive, knowing what to say, and how to navigate IBD. I’m here to help so that this truly can be the best time of the year, for everyone involved.

Here are my top 10 tips for making that possible:

  1. Start the conversation. Stop making IBD the elephant in the room. It can be more hurtful if you only see family or friends a couple times a year and if no one asks how you are feeling. Three words—is all it takes— “How’s your Crohn’s?” Ask questions and genuinely listen to our answers. Your empathy means more than you know. This puts the onus on the person with IBD, and allows us to disclose what we’re comfortable sharing, while knowing that you care. When people don’t ask, it seems as if they don’t care. I find this to be especially true as a patient advocate and blogger. So much of my presence and identity is talking about my life with Crohn’s, that when people don’t ask, it hurts more now than it used to. With the growing online social media discussion, I’m sure many people in our community can relate to this.
  1. Leave the neighborhood watch party for criminals in the streets. Chances are Aunt Joan came across a diet “cure” for Crohn’s while perusing through Facebook last month. Insert eye roll. Don’t question the food we put on our plates or ask if that’s going to “hurt our stomachs”. element5-digital-XQ5QWR8eZ5I-unsplashWe know our bodies, we know our triggers, and we are the ones who are ultimately going to have to pay if symptoms arise. Comments like “Oh, I didn’t think you could eat that?” or “Isn’t that going to land you in the bathroom?” are completely unnecessary. Focus on passing that side dish of mashed potatoes rather than giving us the side eye at the dinner table.
  1. Be flexible. The unpredictability of IBD—whether it’s feeling too fatigued to shower, lying in pain on the couch or holed up in a bathroom when you’re supposed to be getting ready or making a side dish, can cause us to be late for social gatherings. If a family member is tardy to the party or needs to leave earlier than expected, please don’t give them grief. Chances are they had to muster up a great deal of strength to get out of bed, get dressed, and put on their happy face, even if they are struggling on the inside. Practice grace and patience and remember how easy it is for us to mask pain with a smile.
  1. Don’t be offended if we bring our own food or don’t eat much. Oftentimes if we’re symptomatic or in the middle of a flare we are nauseous and eating feels too risky. It’s nothing against the way you make the family favorites. Trust we would eat everything if we could. kelsey-chance-ZrhtQyGFG6s-unsplashBringing “safe” foods or eating ahead of time at home provides comfort and allows us to enjoy more of the party. Please don’t take offense if we eat very little, or nothing at all.
  1. Please don’t make us feel like a spectacle. Chances are while at a social gathering, we’re going to need to break away to use the bathroom. If we need to go upstairs to use your bathroom, please don’t be offended or draw attention to us when we leave the table or return. We’re not trying to be rude; we’re already embarrassed and don’t want to deal with the anxiety of hogging the bathroom or smelling up the house as people socialize.
  1. We have doctors. Thanks to social media and Google, many seem to think they have the background of a MD. Please don’t try and teach us about a way we can “heal with food” that worked for your neighbor. Please don’t downplay or compare IBD to a stomach bug your toddler had. mona-masoumi-6dgpbvuAEpA-unsplashPlease trust we know the side effects of the medications we are on; we know the risks of the surgery we may have to get; we know it all. Please don’t tell us to start taking a supplement you found online. Yes, we’ve heard of: CBD oil, turmeric, probiotics, the list goes on. Please don’t question the safety of our biologic. Our disease is our reality. Unless you live it, it’s not yours.
  1. While IBD is invisible, oftentimes it’s not. If a loved one is on steroids, trust me they are incredibly self-conscious about their appearance. The temporary chipmunk cheeks (are not cute), the acne that makes you feel like a teenager (is nothing to kid about), the sudden influx in weight (is nothing to comment on). The same goes for someone who looks like they’ve dropped a lot of weight. When you have IBD, weight fluctuations happen all the time. It’s not a good thing. It’s because we’re malabsorbing nutrients or in the thick of a flare. If you notice these outward differences in us, please keep the thoughts to yourself unless you know we are purposefully trying to lose or gain weight. Don’t pressure us to be in photos if we seem hesitant. Know that we are aware of the changes and struggle with them daily.
  1. Don’t push the booze. brooke-lark-HjWzkqW1dgI-unsplashJust as with food, everyone with IBD responds differently to alcohol. We understand a glass of wine here or a beer there at a celebration may not seem like a big deal, but one drink can be enough to cause us extreme abdominal pain. Feel free to ask us, but if we decline the offer please don’t pester us, ask us if we’re pregnant, or try and make us succumb to peer pressure. We’d much rather be sober and present at the party without pain.
  1. Use us as a resource. Have a family member, friend, or co-worker of yours recently diagnosed with IBD? Let us know! Use us as a sounding board. I always love having the opportunity to use my patient journey and experience to bring hope and inspiration to others. Connect us with people in your life who we can support and help. The IBD family is incredibly welcoming and uplifting. By sharing this mutual connection, you can possibly change someone’s patient journey for the better.
  1. You play an integral role in our overall well-being. You bring us normalcy. You have the ability to distract us from our isolating illness.
    famparty3

    With my (now) husband, New Years Day 2014. I was very sick at this family party. You would never know it by looking at this photo.

    If someone close to you has IBD and they aren’t opening up or wanting to talk about it, don’t push them. We all handle the disease differently, and chances are in time, when the moments right, they will take down their walls. In the meantime, make it known you are present and there to offer support and encouragement every step of the way—and leave it at that. The simple act of knowing who we can count on and trust makes all the difference. Thank you for walking alongside us on this unpredictable and challenging journey and for seeing us as so much more than our disease. For that we are eternally thankful.

Pregnant? Interested in Furthering IBD Research? Check out the Melody Trial

One of my biggest fears as a mom with Crohn’s disease is that one day my children will inherit the disease. It’s a worry that crosses my mind more than I would like to admit. Whether my son tells me his tummy randomly hurts or if my daughter seems to have several number two diapers one day, my mind instantly goes to that thought. I know I’m not alone in feeling this way. When it comes to research about pregnancy and IBD, the information is starting to come to fruition, but is lacking. There is still so much gray area. Sinai Team

UMass Medical School and the Icahn School of Medicine at Mt. Sinai are on a mission to improve the health potential of babies born to IBD moms. Their research team is launching a clinical trial for 200 women in the United States right now that involves diet intervention in the third trimester of pregnancy. The trial is called the MELODY Trial (Modulating Early Life Microbiome through Dietary Intervention in Crohn’s disease).

Barbara Olendzki, RD, MPH, LDN is an Associate Professor of Medicine and the Nutrition Program Director of the Center for Applied Nutrition at the University of Massachusetts Medical School. Olendzki, Barbara headshotShe is involved in research and clinical care, and she created the IBD Anti-Inflammatory Diet which is being investigated through the MELODY Trial. Barbara explains how through the MELODY Trial, the team is aiming to intervene in the transmission of a pro-inflammatory microbiome from women with Crohn’s to their babies.

“Accumulating evidence suggests that maternal health and diet during pregnancy and early life have an impact on the baby’s microbiome composition and immune system development, with long-term health consequences, including establishing predisposition to Crohn’s disease and other immune-mediated diseases. By modulating the maternal microbiome during pregnancy through diet, our team of researchers hope to promote healthier immune system development in infants born to mothers with Crohn’s disease.”

Why the microbiome plays a key role

The microbiome refers to the communities of microorganisms, including viruses, fungi, and bacteria, living on and in the human body. Recently, altered microbiome in early life has been linked to the risk of developing asthma, eczema, allergy, autism, type 1 diabetes and other myriad of immune-mediated diseases.  Barbara says the team’s preliminary data demonstrates that babies born to mothers with IBD have a higher abundance of pro-inflammatory bacteria and depletion of beneficial bacteria for up to at least 3 months of age, compared to controls.

“Babies born to mothers with Crohn’s Disease are at a substantially increased risk of developing the disease. Specifically, compared with individuals with no family history, the risk of Crohn’s in first degree relatives of a patient with Crohn’s disease is ~8-fold higher.”

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Babies born to mothers with IBD have less diversity of beneficial microbiome than healthy controls, and higher levels of calprotectin, an inflammatory marker common in Crohn’s disease.

How the MELODY Trial will work

The MELODY Trial will test whether a non­invasive diet intervention implemented during the third trimester of pregnancy can beneficially shift the microbiome in patients with Crohn’ s disease and in their babies. This study’s goal is to determine if manipulation of the mother’s microbiome, through diet, would benefit their baby. The diet aims to promote a healthier immune system during a critical time of immune system development. theMelodyTrial_Color

The study targets the third trimester specifically, as this is when certain changes occur with mom and baby to get the baby ready for birth. The baby is thought to share more of the mom’s microbiome at this time, making the final 12 weeks of pregnancy the most opportune time to beneficially influence the baby’s early formation of their microbiome.

Diet is a wonderful way to change the microbiome! Specifically, the IBD-AID (IBD-anti-inflammatory diet) incorporates the avoidance of certain carbohydrates and emphasizes the importance of modifying fatty acids. The IBD-AID also supports inclusion of fruit and vegetables (to achieve optimal nutrient intake, targeting phytosterols, antioxidants, and other plant-based anti-inflammatory components). The diet is presented in three phases, according to each patient’s tolerance, digestive and absorptive capacity,” said Barbara.

In addition, the IBD-AID includes foods with pre- and probiotic properties. Prebiotics are foods (typically nondigestible fiber) that favor the growth of beneficial bacteria colonizing the colon. Probiotics include a variety of fermented foods containing live active bacteria. Each woman who chooses to change their diet receives counseling from nutritionists in the study. pregnant_woman_3

How to enroll and participate in the MELODY Trial

The research team is looking for both healthy controls and women with Crohn’s disease. The MELODY Trial is a national study; anyone living in the continental United States can participate. Whether you’re on medication, in remission, or experiencing active disease—this study is open to everyone.

The study will include 200 women over the next two years. If you are not yet pregnant but are planning a pregnancy, you can also get in touch with the study team now, and then start participating once you are pregnant.

Women who are interested in participating should contact the study team at themelodytrial@gmail.com or by calling 347-620-0210. You can also register to be contacted by our team by filling out this form: https://www.umassmed.edu/nutrition/melody-trial-info/

Participants will be compensated $200, which is paid in installments throughout the study period. Participation begins in the third trimester of pregnancy and involves stool, saliva, vaginal swab, cord blood, and breast milk sample collections as well as health history questionnaires and diet assessments. There is no cost or travel required.

“We will send participants thorough instructions about how to collect and ship each sample. We also provide all the tools needed to collect and ship samples. All stool, saliva, breast milk, and infant diaper samples will be collected at home by participants. Vaginal swab and umbilical cord blood samples will be collected by doctors, midwives, or other trained health care professionals. We will coordinate directly with your provider, or we will give you the tools and instructions needed to coordinate with them directly.”

From one IBD mama to another: My call of action to you

As a mom with Crohn’s who has been pregnant three times and who has two kids ages 2.5 and 10 months, I can’t reiterate enough the importance of participating in research like this.

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Photo credit: Jennifer Korman Photography

Not only are you benefiting your baby, but you’re contributing to research that helps paint a clearer picture of what we can do to lower the incidence of IBD in future generations. Results from the study are expected to be complete and ready for sharing in three years. Let’s join together and help push this research along so future women and families have greater peace of mind and understanding as they bring life into this world.

 

An Evening of Hope: What charity events mean as an IBD patient

There’s something special about sitting in a room with hundreds of people, all with the same goal and mission in mind—to fundraise and advance research for IBD. Over the weekend, my husband and I had the opportunity to attend the Mid-America chapter of the Crohn’s and Colitis Foundation’s “Evening of Hope” Gala in St. Louis.

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Christian and I both battle Crohn’s disease. 

As a patient, it’s difficult to articulate how it feels to attend charity events that revolve around IBD. It’s emotional. It’s uplifting. It’s bittersweet. It’s empowering.

In my 14-plus years living with Crohn’s, I spent so much of that time dealing with my disease in private—never wanting to be judged, never wanting sympathy or pity. When I started sharing my story publicly five years ago, and connecting with others who live my reality, a whole new world opened up. I realized how much support is available and how close knit the IBD community…or should I say family, really is.

The Gala was sold out. Last year the event raised $300,000—this year the hope was to meet or exceed that! That’s from one event in St. Louis—last year the Crohn’s and Colitis Foundation raised more than $80 million through memberships, fundraising events, sponsorships, and other programs.

My favorite moment of the night was listening to a fellow IBD mom and pediatrician speak about her journey with ulcerative colitis and how she’s managed to rise above and experience so much beauty in life, despite her diagnosis. As she spoke, a slideshow of photos of her three sons, traveling the world with her brought happy tears to my eyes. Her remarkable story and experience is one of many that serves as a reminder that just because you have IBD doesn’t mean it needs to hold you back from your dreams. She was diagnosed sophomore year of college, and still managed to become a doctor and have a family. B555E291-A329-4FF8-B7B3-AD7648C43500

Connecting with fellow friends, event organizers, and patients in person is a joyful occasion. I especially enjoyed the opportunity to connect with parents of children, teens, and college students who are taking on the disease. It’s my hope that events like this show them all the exciting research and hope that’s on the horizon for the future of care and treatment for IBD. Events like this are a reminder that it’s not a matter of “if” there will be a cure for Crohn’s and ulcerative colitis, but when.

IMG-3726If you’ve never attended a Crohn’s and Colitis Foundation event for your local chapter—whether it’s a patient symposium, an education event, a walk, or a Gala, I highly recommend you check them out. While it’s great to connect on social media or over the phone, nothing compares to physically being in the same room with people who are passionate about the same cause, who understand your reality, and are driven towards the same mission as you.

 

 

Iron Deficient Anemia: What IBD patients need to look out for

I’ll never forget what it felt like to faint on the teacher’s desk in front of the entire class in fourth grade. As you can imagine, it was quite the spectacle. From a young age, I dealt with dizzy fainting spells. If I was outside at a carnival or festival and it was too hot, I would black out. To this day, if my showers are too hot and I haven’t eaten, my vision can go blurry and a loud “shhhh” sound blasts in my ears. I always have to be extra careful not to stand up abruptly. I was the girl in high school who carried glucose tabs when I got too weak.

Little did the doctors and I know in fourth grade that down the road when I turned 21 I would be diagnosed with Crohn’s disease. To this day I wonder if my anemia from a young age was a sign of what was to come. Upon my diagnosis, my hemoglobin plummeted to seven. To give you an idea, most people can’t function and are in dire need of a blood transfusion at that point. The general rule of thumb when it comes to hemoglobin is 13 and above for men and 12 and above for women. IBD patients fall into the same expectation as “normal” people when it comes to these ranges. For as long as I can remember, I’ve celebrated being in the double digits—a 10 is often hard for me to come by.

For those who don’t know what anemia is, it’s marked by a deficiency of red blood cells which means you have less blood to carry oxygen to the rest of your body. When you have a low hemoglobin you often feel extreme fatigue, weakness, experience chest pain or shortness of breath, have a fast heartbeat, headache, dizziness and lightheadedness. FullSizeRenderFor many of us in the IBD community, we deal with what is called Iron Deficient Anemia or IDA. With Crohn’s and ulcerative colitis, long-term irritation and inflammation in our intestines can interfere with our body’s ability to use and absorb iron properly. IDA is considered an extraintestinal manifestation of IBD.

I’ve teetered back and forth with IDA for as long as I can remember. And the same can be said for much of our community. According to the Crohn’s and Colitis Foundation, 1 in 3 people with Crohn’s disease or ulcerative colitis has anemia.

Causes for IDA:

  • Low iron
    • Inflammation in your intestines can interfere with your body’s ability to use or absorb iron.
    • Blood loss from intestinal bleeding—oftentimes you can be bleeding in your stool, and not be able to see it.
    • Poor absorption of vitamins and minerals, like vitamin B12 or folic acid.
    • Medication

Treatments for boosting your hemoglobin and Iron Levels:

  • Iron supplements—I’ve taken oral iron for years. I currently take a prescription prenatal vitamin with iron, calcium, folic acid and vitamin D, daily.
  • IV iron for those with active IBD, or for those who cannot tolerate oral iron.
  • Get your IBD under control with the right medication
  • Blood transfusions in severe cases.

It’s important you communicate how you are feeling with your gastroenterologist, so they know if you are struggling. All it takes is a simple blood test ordered by your doctor. The test would need to include a typical CBC along with an iron panel.

I recently traveled to Houston and participated in a videotaped round-table discussion on this topic with two physicians and a nurse practitioner. 281628.04.pngI provided the patient perspective. It was a great opportunity, but also taught me a lot about the prevalence of IDA with the IBD community, and the importance about being proactive and getting yourself the boost you need so you can feel your best each day. As a mom of two little ones, my anemia along with my Crohn’s can be a heavy burden to bear. That’s why I do my best to stay on top of managing my illness and taking all the supplements necessary to try and combat my malabsorption problems. I hope this article inspires you to do the same and realize you are never alone in your struggles.

A close-knit family: The story behind this Crohn’s blanket

There’s nothing quite like a grandmother’s love. They have a way of bringing comfort, peace, support, faith, and love to family, among many other incredible traits. IMG-2601When seven-year-old Penny was diagnosed with Crohn’s in January 2017, her grandmother, Mary, started knitting her a purple blanket. She chose the color purple because it’s not only Penny’s favorite color, but also the color that represents Inflammatory Bowel Disease (IBD).

“Penny has always had a special little gauze blanket, but I wanted to make something for her that would hopefully comfort her on days when she does not feel well,” said Mary Otto. “It’s the same idea as prayer shawl people make for those who are ill. As I knit, I pray for Penny.”

Other times, Mary says she prays for her family, for others battling Crohn’s, for those with other illnesses and diseases, and for people in general. As of now, the blanket is 44” wide and 42” long. Mary jokes she isn’t a consistent knitter and that she has a long way to go before the blanket is “adult size”. Penny currently stands 3’9”. IMG-2600

The passion project has been a special hobby between Penny and Mary. It’s Mary’s hope that in the future Penny will look back fondly on the memories and that each time she is snuggled up under the blanket she feels not only its warmth, but the warmth of her love now and always.

“I hope when Penny isn’t feeling well or in the hospital that she will find physical comfort in it (due to its weight), but also emotional and spiritual comfort because of the love and prayers that were part of its creation,” said Mary.

Every time Penny sees the blanket, her face lights up and she asks when it will be done. It’s a labor of love for Mary, every stitch made with purpose. As a grandparent, she says it’s heartbreaking to see a grandchild take on a disease like Crohn’s.

“No one wants to see their loved one suffer. I don’t like the helpless feeling when there is nothing I can do to make the situation better. I worry about Penny. I’m also concerned about her parents and brothers, because an illness like this affects the whole family.”

IMG-2918At the same time, Mary says she’s impressed by Penny and how she is taking all the baggage that comes with Crohn’s in stride at such a young age: the daily medications, the infusions, the lifestyle changes.

“Penny demonstrates so much strength, she is my little hero!” A hero who will one day hold on tightly to that blanket and not only feel the love it exudes but be reminded that she’s never alone in her struggle.

While Penny was dealt a difficult hand of cards when it comes to her health, there’s no denying she hit the jackpot when it comes to her family.