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

February 3, 2020February 3, 2020Leave a comment

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

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

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

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

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

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

Hospitalized with a bowel obstruction the year of my surgery.

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

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

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

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

January 20, 2020January 20, 20201 Comment

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. Her 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. There 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.

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.

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.

You can follow Annelise here:

Instagram: @annelisebretthauer

Facebook: Annelise Bretthauer

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

January 13, 2020January 13, 2020Leave a comment

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

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

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

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

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

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

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

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

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

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

Photo credit: Alexandria Mooney Photography

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

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

January 6, 2020January 6, 2020Leave a comment

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

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

The 20s:

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

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

Dated and found love.

Enjoyed a fun social life with friends.

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

Adopted my dog, Hamilton.

The 30s:

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

Moved to Missouri to follow love and got married.

Got pregnant and had two babies.

Fewer social hang outs and more family time.

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

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

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

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

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

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

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

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

Why Crohn’s is the gift that keeps on giving

December 23, 2019December 23, 2019Leave a comment

When you think about your IBD, chances are many thoughts race through your mind. This holiday season, I started thinking about how Crohn’s is the immaterial gift that keeps on giving. I know, it sounds crazy. But hear me out.

The unpredictability and uncertainty of IBD has forced me to live in the moment and stop worrying about tomorrow and the future.

The pain, setbacks, and flare ups have provided me with perspective and empathy for others that’s only possible when you live with chronic illness.

The fatigue reminds me of the importance of slowing down, not pushing myself too hard, and practicing self-care.

The ups and downs and in between have given me an innate truth serum about other people’s intentions and character and allowed me to know who I can truly count on.

The side effects of steroids and the scars left behind from my bowel resection and c-sections have humbled me.

The dark moments that tried to break me have instead showed me that God truly does give his toughest lessons to his greatest teachers.

The hatred I felt for my body through the years (especially my abdomen) disappeared the moment I became pregnant and watched my body transform to bring two healthy babies into this world.

The hospitalizations that have tried to break me have forced me to bounce back and be stronger physically and mentally than I was before.

The initial years of isolation when I kept my patient journey under wraps led me to go out on a limb, share my story, and feel the support both near and far from a community that’s like family.

It’s taken me nearly 15 years to think this way about my disease, about my reality. I’m not trying to sugar coat or diminish the seriousness of IBD, but instead share my mindset and how I choose to take on Crohn’s disease. Yes, some days are terrible. Yes, there have been times when everything felt heavy and bleak. Yes, there are still times I feel sorry for myself. But those days are far outnumbered by the joy-filled, happy days I choose to focus on.

My hope for you this holiday season is that you’re able to pause and embrace the hand of cards you’ve been dealt and think about all you’re capable of, all you’ve accomplished, and all that lies ahead. Give yourself credit for all you do today and tomorrow, all you’ve endured in the past, and all you’ll overcome in the future.

Diet and Nutrition: The role they play in IBD

December 16, 2019December 16, 20191 Comment

Nutrition and IBD. Just saying those two words together makes me feel like I’m running through a rabbit hole, unsure where to turn….and I’ve lived with Crohn’s disease for more than 14 years. Everywhere you look, you see people claiming to “heal their gut” through diet alone, while sharing diet hacks that “cure” IBD, when in fact there is no cure.

Unfortunately, my first experience with a dietitian, days after my diagnosis, was not a positive one. She came into my hospital room and was very doomsday and black and white about what my future held. The conversation led me to believe I would never eat raw fruit or veggies, salads were out, and fried foods were always a no-no. I was told I could have white bread, white pasta, cooked veggies, and plain chicken from that day forward. Hearing this made grappling with the diagnosis much more difficult.

My experience is hopefully not a typical one for those in the IBD community. Dietitians can be and are key players in our overall care teams. They help guide our nutrition and lead us on a path to better health. Chances are if you or someone you love has IBD you’ve come across the laundry list of IBD-friendly diets (SCD, anti-inflammatory, paleo, etc.). If you’ve found a diet that works for you, that’s great—but it can be extremely dangerous and damaging to use your own personal experience to sway others, especially if you preach to go off all medication and focus on diet alone.

Just as IBD manifests uniquely in every person, trigger foods vary, too. This week—I interview Therezia AlChoufete, a Registered Dietitian Nutritionist (RDN) who specializes in Gastrointestinal Diseases, to set the record straight about this area of disease management. Therezia completed her Bachelor of Science in Neuroscience and her Master of Science in Nutrition and Dietetics from the University of Pittsburgh.

NH: What role does diet/nutrition play in treating IBD?

TA: “A huge role – symptom management is very helpful to improve quality of life for patients with IBD, and many patients have difficulty understanding what they should or should not eat. A Registered Dietitian Nutritionist can help to identify trigger foods and other factors that may be affecting digestion & GI symptoms, nutrition for ostomy management, modifications to diet before and after surgery, recipe modifications to improve GI tolerance, and much more depending on each patient’s medical history.”

NH: When you’re given a patient with IBD, what type of information do you share in those appointments?

TA: “I see my patients in an outpatient setting – this allows me to review the patient’s goals, assess their nutrition status, and determine an individualized plan with every patient. Information can vary depending on each patient’s unique history, goals, and food tolerance.”

NH: Each person’s body responds differently to specific foods, everyone has different triggers, how do you create a plan that is tailored to everyone, rather than saying “all people with IBD need to stay away from XX”?

TA: “There is definitely no one-diet-fits-all approach for IBD. I typically review the patient’s food history, their unique food tolerances, and provide a plan according to each person’s goals and disease status. I try my best to avoid food restriction and liberalize the diet as tolerated by each patient.”

NH: What are the most common questions and concerns you hear from patients?

TA: “A very common question is what food/supplements can I eat to fix my symptoms – unfortunately, there is not a simple answer. But this leaves us some room to discuss food triggers in more detail and review ways to achieve a well-balanced diet.”

NH: Why is working with a nutritionist so critical for those with IBD?

TA: “Registered Dietitian Nutritionists are food and nutrition experts. We use science-based evidence to provide recommendations that are specific to each person’s medical history. This may include review of micronutrient deficiencies, hydration status, fluid build-up (sometimes following use of steroids), medication side effects, risks of malnutrition (which can occur in all body sizes), supplement questions, and so much more. An RDN can provide individualized medical nutrition therapy to minimize GI symptoms and optimize gut health in conjunction with medical plans provided by gastroenterologists.”

NH: What type of difference do you hope to make in a person’s patient journey?

TA: “My hope is to help patients liberalize their diet and improve their quality of life. It is very important to me to help patients realize that they have a team of professionals that can help them manage their IBD. I enjoy working with a team of clinicians to target medical, behavioral, and nutritional health concerns to optimize care for each individual.”

NH: What advice do you have for patients who are in the middle of a flare up?

TA: “Communication with your Gastroenterologist is very important if you feel like you are having flare-like symptoms in order to receive proper treatment. Sometimes, foods that are typically tolerated during times of remission are not tolerated during a flare, and an RDN can help you determine a softer diet that is easier to digest based on your individual needs.”

NH: The term “healing the gut with food” is commonly heard within the IBD community. What’s your belief on that vs. using diet as a combination therapy with medication?

TA: “Unfortunately, diet cannot cure IBD. It can improve some symptoms, but it is so important to work with your doctor to receive proper medical treatment for the disease, follow up with a dietitian to optimize your diet, and address any behavioral health management with your therapist or psychiatrist.”

Connect with Therezia here:

Twitter: @AppetiteOfMind

Instagram: @appetite_of_mind

Additional Resources:

Crohn’s and Colitis Foundation: https://www.crohnscolitisfoundation.org/diet-and-nutrition

International Foundation for Gastrointestinal Disorders: https://www.iffgd.org/other-disorders/inflammatory-bowel-disease.html

United Ostomy Associations of America: https://www.iffgd.org/other-disorders/inflammatory-bowel-disease.html

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

December 9, 2019December 9, 2019Leave a comment

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. At 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.

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. The 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

November 25, 2019November 25, 20191 Comment

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.

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:

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.

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”. We 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.

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.

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. Bringing “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.

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.

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. Please 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.

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.

Don’t push the booze. Just 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.

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.

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.
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

November 20, 2019November 20, 2019Leave a comment

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.

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. She 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.”

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.

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.

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.

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

November 18, 2019November 17, 2019Leave a comment

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.

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.

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.

If 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.

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Tag: chronic illness