Finding “Hope” and grace through motherhood and IBD

May 28, 2018Leave a comment

Connecting with women who battle inflammatory bowel disease and juggle it all is empowering. When I came across Hope (@hopeheartandhome) on Instagram, I was immediately impressed by her upbeat, real-life look at life as a stay at home, wife and as a blogger. Weeks passed by—and she mentioned she had Crohn’s disease in her in Insta-story. I sent her a direct message because there’s so much we can learn from one another as we navigate motherhood and life in general with inflammatory bowel disease. I specifically was interested in featuring Hope because she’s pregnant with baby #2!

Hope is 28 and lives in Charlotte, North Carolina with her husband and two-year-old daughter, Evie. She’s due with her second baby this October. August marks 10 years since she was diagnosed with Crohn’s disease. In getting to know Hope, her name fits her to a T. She is inspiring, driven, funny and focused on living her best life—despite her disease.

Like many of us, Hope was young when she received the life-changing diagnosis. At only 17—she had her entire future before her. In November 2012, after numerous hospital stays and an abscess that would not go away with IV meds, she had surgery to remove her ileum. Unfortunately, post-surgery she faced several complications ranging from a pinhole leak, surgery to repair the leak, as well as a serious case of MRSA. Hope says thanks to her faith in Christ and the support of family and friends, she came out stronger than ever with a 7-inch battle scar to prove it! Hope has been taking Cimzia injections ever since and has been able to maintain remission.

As a woman with IBD–did your Crohn’s present any complications or issues along the way with your first pregnancy?

Hope: “I answer this with an insanely grateful NO! I am extremely blessed that my body reacts so well to pregnancy. In fact, my gastro doctor often teases me that I need to have alllll the babies because my body loves being pregnant. I say this with sensitivity, as I know it is a struggle for many women and due to surgery complications, the doctors I saw were pretty sure I would have difficulty conceiving; however, I am so thankful that God has given me grace in that aspect of my life. I will say that my first pregnancy was a bit of an “oops”, BUT my body was in 100% remission and I believe that greatly contributed to my success. This time around—knowing that I wanted to get pregnant, I made appointments with my GI and had blood-work, a colonoscopy, and wound up having to have an MRI to rule out any potential flare up. Thankfully, I was flare free and my doctor gave us the “ok” to try and conceive. I attribute much of our success to my remission. A healthy mom has a much greater chance of conceiving successfully in terms of Crohn’s Disease.”

How has Crohn’s impacted your role as a mom and a wife?

Hope: “Wow. This a big question! I’ve honestly never really thought about it impacting these roles of mine. I see Crohn’s as a little portion of who I am. It’s a very unglamorous and annoying part of me that I don’t like…but, it’s a part of me and therefore my story. Truthfully, I have been so blessed to have been in remission for about four solid years now, so my roles of wife/mom haven’t been altered by it, and for that I am extremely grateful. It was a long and bumpy road to get here and I would be lying if I said the thought of having a flare up doesn’t terrify me. It definitely does, BUT I try to live my life with as much positivity as I can and a lot of laughter. I’ve found that Crohn’s has matured me far beyond my age in years and that has helped me navigate the endless responsibilities that come with being a young wife and a young mother. I never take health for granted and I am thankful every day for the opportunity to raise my child(ren) free of feeling sick. I get fatigued faster than the average person due to Crohn’s, but I am so used to it, it’s my normal. Also, have you ever met a mom who is full of endless energy?! Nope.”

Now you’re pregnant with baby #2, first of all HUGE congrats! How has this pregnancy compared to your first one–how are you feeling in comparison, etc.?

Hope: “Crohn’s-wise I feel wonderful and am experiencing zero symptoms. Pregnancy wise I am much more exhausted this time around thanks to my full of energy little two-year-old! Second pregnancies are very different… the “newness” is gone, and you know what to expect and I haven’t had a minute to daydream about this baby as often as I did with my daughter, but that’s because she keeps me busy! We’re excited to see if a little boy or another little girl will be joining us this fall!”

What advice do you have for women with chronic illness who aspire to be moms themselves?

Hope: “Patience and prayer. God hears our every thought and I truly believe He desires to give us the desires of our own hearts. The biggest thing I have learned in my life as a Crohn’s girl is that our timing is not our own. We must surrender to Christ and let him lead us through the highs and the lows. If you aren’t a person of faith, my prayer for you is that you find peace in either the waiting of becoming a mom or peace in the journey of motherhood. It is not easy at all, but it is so worth it, and I pray for every woman who might be struggling to carry a baby because of this disease. It truly breaks my heart to think about that suffering. When I was pregnant with Evie, I joined a study called the PIANO study which stands for Pregnancy and Neonatal Outcomes in Women with Inflammatory Bowel Disease. I answered questions during pregnancy and at birth I brought in a lab kit where we sent off blood from me, from Evie, and from my umbilical cord, to study if any of my medications got to my baby. There was no trace of Cimzia in Evie’s blood or the umbilical cord which was wonderful and a big part of why I take Cimzia, as it does not pass the placenta. But, I mention this study to share my passion to help all women with IBD reach their dream of motherhood. I crave more information about this disease specifically for those moms struggling. Know that you’re not alone and you have many people rooting for you and your future babies!”

How do you find time to focus on self-care and combat the fatigue associated with not only motherhood, but IBD?

Hope: “I have not mastered this at all, but I am trying. Working out is something I do for me…my 45 minutes of endorphins, alone time, and knowing I am fueling my body. Open communication with my husband is another thing that helps me focus on self-care. If I am feeling exhausted or just needing some time, I tell him. We must communicate on how I am feeling to fully be a team. And hey, same goes for him! I’ve learned a lot about friendships/relationships and making sure that I set my time and energy on things and in people who are truly rooting for me and my family and vice versa. Life is too short to spend it stressed out or surrounded by people who are not life-giving. That’s been a hard lesson for my people pleasing self, but, being strong in my beliefs and in who I am and what I want to put out into this world has helped my mindset and overall health tremendously.”

Tell me about your blog Hope Heart and Home. With more than 11,200 Instagram followers you must keep busy! What inspired you to start the blog?

Hope: “This blog was originally started by my sister and I actually had my own blog, but once Evie was born, my blog kind of fizzled and after awhile I was missing that creative outlet. My sister was pregnant with her second at the time and we decided to join forces and it was so much fun for us! Recently, my sister has taken a step back from blogging and is pursuing different passion and focusing solely on her family, so the blog has evolved again into an outlet for me. I am an extrovert and love talking with new people/sharing recipes/getting advice/looking at the newest trends/home decor/etc. so blogging just seems like a good fit for my personality. I am a stay at home mommy first and foremost, but the blog has allowed me to have something else that’s just mine and just for me.”

Interested in connecting with Hope? You can do so by emailing her at: hopeheartandhome@gmail.com or following her on Instagram (@hopeheartandhome).

Addressing compassion fatigue as a patient advocate

May 21, 2018May 21, 20181 Comment

Every hour of every day we live with inflammatory bowel disease. Once you hear the diagnosis, it’s a part of you… every. single. moment. of. your. life. That alone—feels isolating and scary. When you decide to share your personal patient story publicly, you open yourself up to a world of support. As a patient advocate, you also become somewhat of a confidante and voice of reason for your peers in the community.

While it’s incredible to be able to connect with those who live your reality, there are times it can feel overwhelming. Personally, as a patient advocate, who’s battled Crohn’s disease for nearly 13 years, I consider myself well-versed on the topic—but, all I know, are my own experiences. IBD presents differently in every person. Part of being a patient advocate is showing support for others living your same reality. The girl in the UK who was recently diagnosed and nervous about heading off to college. The young man in Nebraska going through a bowel resection surgery. The kindergartner receiving her Remicade treatment.

Since my bowel resection surgery in August 2015, I’ve been able to manage my disease with daily medication and a biologic injection. Luckily, I’ve felt well most of the time since then, and haven’t been hospitalized since my surgery. That being said—when friends (many who I’ve never met) and strangers reach out—through email, Instagram, Twitter, Facebook, texting…you name it…round the clock…desperately asking for advice and support…my heart sometimes starts to ache with stress.

I want to be sensitive with how I word this article, because the LAST thing I want is for people to stop reaching out when they need advice or support. What I do want—is for people to recognize what compassion fatigue is…and how as chronic illness advocates and caretakers we need to be mindful of how we’re feeling and internalizing the struggles of those around us.

The overwhelming nature of compassion fatigue

When people ask me about my diagnosis, my bowel obstructions, my surgery… it draws a great deal of emotional energy, and at times, can open up proverbial wounds. I’m happy to share my patient journey with transparency and honesty. But, day after day, year after year, these conversations can be a burden. A burden because I truly worry and care about each person I talk with. Even if I’m feeling well and in remission—the disease stays top of mind and I start to question my own well-being and health.

Like everything in life, finding balance and making time for self-care is paramount. The IBD family is a fantastic community of support. I am just one piece of the advocacy puzzle. It’s all about maintaining that balance in a healthy way, recognizing when the fatigue is taking over—and knowing when to take a breath and step away. I’m much better able to connect with people when I’m recharged and energized. If I’m at the end of the rope all the time, I simply don’t have anything to give, and everyone loses.

I offer support from the bottom of my heart, but as a mom and a wife, I do need to recognize when it’s time to unplug and take time for myself. When my baby naps each morning—I spend that “break” on my computer writing articles about IBD, participating in Twitter Chats, and talking on the phone with those who want to hear about my patient experience.

Recently, my husband said we should start a new rule in our household, no phones after 8 p.m. I was thrilled with the idea. So often when we put our son to bed we resort to hanging out on the couch, with the TV on and phones in our hands. Much of that “free” time I used to spend responding to messages from those seeking IBD support. Sometimes you just need to put down the phone and recognize how important those right in front of you are. The people who are by your side every single day. Your family. Your caretakers. Show them the love and the attention they deserve. Nurture the relationships that matter most to you. Be present in the moment.

Compassion fatigue ebbs and flows. Like anyone who battles fatigue from IBD, some days I feel like I can take on the world and spend all my free moments on the phone or responding to emails. Other days it takes A LOT of effort for me to email back someone who I’ve never met and discuss why I chose Humira, how my pregnancy was with Crohn’s, etc. Time is precious. I absolutely hate not responding almost immediately to everyone who reaches out, but please be patient with me.

As part of my self-care and disease management I need to de-stress, so I don’t put my own health at risk. This article is painful for me to write—I can’t stand admitting that I am struggling to do it all. But, compassion fatigue has been something I’ve been feeling for a few months. I want to be the best advocate for others and do all I can to make a difference and show there’s so much life to be lived outside of your disease. I want you to see how much you can thrive with this disease and all that you can accomplish. I want to be the person I needed the day my world turned upside down when I was diagnosed. I want to be all the things. But it’s not possible. It’s not fair to me, it’s not fair to you.

My call of action to you

When you reach out, if it takes a few days for me to respond—don’t think it’s because I don’t care or won’t reply. I will. If you have questions about why your prednisone is making you feel a certain way or how to do a colonoscopy prep—check with your GI first. Oftentimes many questions and concerns are covered extensively on blogs and in articles—a simple Google search may give you all the information you need. Lastly, know my concern and wish to help is genuine, but there’s only so much of me to go around.

I’ve been in the hospital bed. I’ve been too weak to walk up a few stairs. I’ve been on 22 pills a day. I’ve sat on a news desk and anchored countless shows while dealing with my disease in silence. I’ve woke up on my wedding day unsure of what my disease would do. I’ve been pregnant and dealt with the fear of flaring while creating a life. I’ve done a lot as a patient and a person. So, when I’m feeling well and trying to enjoy the feel-good days that I have…that can be taken away in the blink of an eye, please understand that I’m here for you, but need to also take time for me.

I’m going to leave you with this quote from Daniel Garza, an AIDS, Cancer and Ostomy advocate. Daniel shared this eloquent description of patient advocacy during the HealtheVoices conference I recently attended in Chicago.

“We all have this fire. We’ve been in quick sand and high tides and made it to the end. Despite the doubts, after everything, we don’t want other people to go through it. We’re the coat we put on the puddle, so people don’t get their feet wet. We don’t care if we get dirty again.”

In closing, allow me to continue to be that coat on the puddle for you, but please have a little patience with me.

Different strokes for different folks: Art Therapy and IBD

May 7, 2018May 7, 20183 Comments

Coloring books aren’t just for kids, they can be a helpful calming tool for those who battle chronic illness. The simple act of coloring intricate shapes and patterns allows us to enter a meditative mental space. Once you enter this state of calm amongst the stress surrounding your life, you can take in the positive messages of a coloring book.

I recently connected with an artist named Alia who created a coloring book specifically geared toward those who battle inflammatory bowel disease. It’s called “Crohn’s and Colitis: Color to Cope.” After watching her sister battle Crohn’s disease for more than 20 years, she was inspired to use her talents to make a difference.

Alia says, “Seeing how much my sister suffered, physically and emotionally with Crohn’s inspired me to create a coloring book. The psychological aspect of coming to terms with IBD is very underestimated, especially for young women. I wanted to create something to make her feel better. I noticed there was a limited number of informational books available. Adult coloring is a proven stress reliever and engages the limbic (emotional) brain. It helps you enter a ‘flow’ like state. I thought pairing inspiring/supportive quotes with images would help anyone suffering with IBD process what they are feeling.”

See the support in the palm of your hands

The coloring book is a visual representation of support that many of us in the IBD community yearn for. It validates and honors our experiences—no matter what age you are. Flipping through the pages, you’ll see quotes and images for times of stress, sadness and laughter. The coloring book provides an accessible way to release stress and get motivated to take on the day.

Since the coloring book launched, Alia has received amazing feedback from the IBD community. Here’s an example shared on Instagram:

“Thank you for creating this coloring book. I was diagnosed with Crohn’s at age 17 and am now 33. After four surgeries and two ostomies, as well as a lifetime of stories that no one would truly understand unless you were in my shoes, I think this book is very therapeutic and I appreciate your empathy and support. Thinking of you & your sister. Much love.”

The inspiration behind the art

As someone with a creative mind whose passion lies in art, Alia did research within the IBD community to see what types of images might resonate, along with key messages and emotions. Safe to say, the girl did her homework!

Alia went on to explain that coloring calms the amygdala, which is the part of the brain that controls the fight or flight response. This part of the brain is often on high alert during periods of stress or illness. When we’re fatigued, and our energy is low, coloring isn’t taxing, it can take us back to our childhood. A time of life that was most likely more carefree. Whether you’re at home or in a hospital bed, the coloring book can serve as a helpful tool in your day-to-day management of your illness.

How to get your hands on a copy

The coloring book is available on Amazon in the United States, the UK and Europe. Click here to purchase “Crohn’s and Colitis: Color to Cope.” The coloring book is published under Alia’s author name: “MeMoments Creative”.

Follow Alia on Instagram: @crohns.colitis.color2cope

Along with IBD, Alia has also created coloring books geared towards infertility. Her most recent book targets mental health—depression and anxiety. She plans to create more coloring books in the future that can serve as a support tool for other patient communities as well.

“Byrd’s” of a feather fly together: Advice from a fellow IBD advocate

April 30, 2018Leave a comment

Feelings of isolation, fear and embarrassment. Chances are, if you battle inflammatory bowel disease you’ve experienced all of these feelings upon your diagnosis. That was the case for Byrd Vihlen, a 31-year-old from Georgia, who was diagnosed with ulcerative colitis at the age of 26. Fast forward three years and her diagnosis changed to Crohn’s Colitis.

Byrd recently won the first-ever Lights, Camera, Crohn’s Instagram giveaway. The connections we make along our patient journey empower us to be stronger and face our illness head on. Check out this interview that sheds light onto Byrd’s brave battle against IBD.

NH: What symptoms did you have that led you to know something was wrong?

BV: “For about a year, I was having digestive problems (seeing occasional blood in my stool, chronic constipation, and bloating). I thought it might have been a milk/diet sensitivity, so I scheduled an appointment with a GI, and he immediately advised me to get a colonoscopy. I was really scared and didn’t have enough information, so I cancelled a few days before the scheduled procedure. It wasn’t until almost a year later (after a few weeks of antibiotics for sinus problems) that I realized something was horribly wrong. I started to bleed a lot, was in severe pain unlike anything I had experienced before, and had extreme urgency.”

NH: How has your disease changed your perspective on life?

BV: “Before I got diagnosed, I would easily get caught up in the plans for what I thought my future would and should look like. Being chronically ill makes you slow down, loosen the control of your life that you thought you had in the first place, and focus more on what’s going on today–because most of the time, you’re fighting just to get through the day. It makes you aware of the little things that you may have been too busy to see before, like people trying to hide their suffering and struggles. I’m thankful IBD has opened my eyes and given me the gift of true empathy. That empathy has led me to crave a deeper understanding and genuine connection with friends and loved ones. It has also shown me the true strength in others, and I am constantly humbled by the selflessness of my sweet husband and forever soulmate.”

NH: What advice do you have for those who are newly diagnosed with IBD?

BV: “Finding the right team of doctors, get referrals and read online reviews. When you do find a doctor you trust, you still need to be your own biggest advocate and use your voice. Don’t be scared of asking questions and calling them too much–only you know when something isn’t right with your body. Connect with more seasoned patients and ask for advice, there’s a lot of overwhelming information on the internet, so it’s nice to receive firsthand experience from people you know. Your new “normal” is going to look a little or a lot different; it will take some time to adjust to that. Try not to compare your new energy level to your old, your body is fighting a hard battle and you’re doing the best you can. If your energy/activity level is more limited, plan accordingly. Choose wisely who you want to spend your time with and what you want to do – soak in and cherish these times.”

NH: What inspired you to share your patient journey with IBD on social media?

BV: “After diagnosis I was feeling isolated, scared, and embarrassed–like I was alone in the pain. I wanted to tell others about this huge life-changing battle I was beginning to fight, but realized that most people are uncomfortable talking about chronic illness in person. I had a desire to be seen, understood, and wanted to connect with others going through a similar journey. I then discovered the incredible Instagram community waiting for me and loved that as an artist I could creatively tell my story in a visual way.”

NH: How does support from others in the IBD community on social media help you push through the difficult days?

BV: “Connecting to others who are fighting gives me strength in knowing that I’m not alone. People sharing their vulnerability is beautiful and it warms my heart. Whenever I am having a really difficult day and see a fellow warrior saying they can relate, offering words of kindness, or that they are having a hard day as well, you can feel that genuine connection and know that they truly mean it.”

You can connect with Byrd on Instagram and follow her patient journey by following her here: @byrdvihlen. Stay tuned to my Instagram page (@natalieannhayden) for future Light’s, Camera, Crohn’s giveaways!

First EVER Lights, Camera, Crohn’s Instagram giveaway

April 19, 2018April 19, 2018Leave a comment

Hey guys! Big news to share. I just launched the first Lights, Camera, Crohn’s giveaway on Instagram. As someone who’s battled Crohn’s disease for nearly 13 years, I’m well-aware of how far a simple act of kindness can go, whether it’s from a friend or a stranger. That’s why—I’ve teamed up with other positive forces for this special giveaway. Here are the prizes:

–A cozy, lightweight hoodie from @thegreatbm that reads “IBD Can’t Stop Me” on the front and “Ask me about my resilience and determination—where I find my strength—what motivates me to keep going and reminds me I can handle this pain—why I refuse to quit and what I’m doing to overcome my IBD” on the back. I own this hoodie, it’s comfy and so empowering.

-Pretty earrings that go with any outfit from @rockswithsass. The store owner battles Crohn’s disease herself and donates a portion of all proceeds to the Crohn’s and Colitis Foundation!

-Stoke quotes from a childhood friend who’s dedicated her life to motivating others through messages of positivity. @marliwilliams has donated 100 uniquely designed quotes geared towards helping you find and live your purpose everyday.

Here’s how you enter the contest on Instagram:

Like the post on my Instagram (natalieannhayden).
Make sure you’re following me @natalieannhayden, as well as the following pages:

@thegreatbm

@rockswithsass

@marliwilliams

Tag your besties or some fellow IBD’ers in separate comments. Each person you tag counts as an additional entry. Good luck!

The giveaway ends Saturday, April 21^st at 11:59 PM MST. Winner will be announced on Instagram Sunday, April 22.

This is my way of saying “thank you” for all your love and support through the years. Simple acts of kindness (especially on days when we aren’t feeling our best)…can make all the difference. If you’re interested in donating to a future Instagram giveaway, shoot me an email: natalieannhayden@gmail.com. I’d love to collaborate with you to make someone’s day!

5 tips for finding flexibility within yourself while battling chronic illness

March 26, 2018Leave a comment

I’m a planner. Always have been. Always will be. But, as my grandmother always used to tell me, “Tell God you have a plan, and he’ll laugh at you.” That seems to be the case all too often for those of us in the chronic illness community. If you’re like me, each flare up and hospitalization has occurred completely out of the blue. I’ve been blindsided each and every time. I’ve worked a full day, trained for a half marathon, taken a road trip…you name it…and BAM…hello, bowel obstruction or abscess.

So, how can we go about our lives as normally as possible with the ever-looming dread of the next setback and flare? It’s easier said than done, but it is possible. I’ve battled Crohn’s disease for nearly 13 years, this perspective and knowledge took time for me to gain. When I was first diagnosed, flexibility and patience weren’t in my vocabulary. But, like all things in life, time helps us heal and time teaches.

Here are five helpful tips for finding flexibility while taking on your illness:

Do your best to live in the now. Rather than focusing on the past hiccups in your journey, live in the moment. Feeling well? Capitalize on this. Go outside, meet up with friends or family, get some exercise. It’s these fleeting moments of invincibility that provide us with a chance to live like the rest of society. It may seem simple, but recognize these moments, verbalize them with loved ones. Celebrate the small joys, that are a big deal.
Stop beating yourself up over what could happen. Many people in the chronic illness community talk about how common post-traumatic stress disorder (PTSD) is. We’ve all faced some challenging, debilitating moments that have shook us to our core. Of course we don’t want that to happen again. Don’t place blame on yourself. Instead, give yourself credit for all you do on a daily basis to manage your disease—whether it’s watching your diet, taking medication or making an effort to practice self-care.
Put your health first, don’t push yourself to the brink. Nobody likes to cancel plans or be a no-show at big events and social gatherings, especially when you’re actually looking forward to them. But, by putting other people’s needs before your own and worrying about what people might say or think of you—you’re only putting yourself in harm’s way. Be mindful of how friends and family members react when your disease is symptomatic. Are they supportive and understanding, or do they make you feel bad for bowing out? When you’re too tired, in pain or struggling, that’s a message from your body telling you to slow down. Please listen.
Roll with the punches of treatment. Trying to wrangle a chronic illness into control is exhausting. It’s constantly a chess game. When you no longer respond well to your biologic, when you’re put on a new medication, when you’re told to try eliminating sugar, dairy, gluten or all the above…try to give everything a shot and a chance. Think about the risk vs. the reward. It’s emotionally draining when nothing seems to be working or helping to ease your pain, but, staying positive and open helps us all physically, emotionally and mentally. Keep an open mind with your healthcare providers and have two-way communication. Educate yourself, learn about the clinical trials and treatment options out there—be your own best advocate. Connect with others who are living your same reality. Trust in other peoples’ journeys, but recognize your journey is unique and so is everyone else. Each person’s IBD presents differently.
Be the first to admit when you need help. By telling someone you are struggling, hurting or worried, you are not showing weakness. You are not complaining. If you are going through a dark time and wonder how you’re ever going to overcome a current setback, lean on your support system without hesitation. Internalizing your pain will only make matters worse. You’re still brave and resilient, no matter what.

The difference between sympathy and empathy with chronic illness

March 12, 2018March 12, 2018Leave a comment

Sympathy and empathy. Two different words with very different meanings. Especially to those of us in the chronic illness community. The first nine years I battled Crohn’s disease, I kept my diagnosis as private as possible. Only close friends, family and co-workers knew what I was going through behind closed doors. I did this because I didn’t want sympathy.

Back on the news desk following a bowel obstruction hospitalization, would you ever guess this was my first show back?

I didn’t want people to look at me differently. I didn’t want to be judged or looked down upon. I didn’t want to be viewed as “less than” by my peers. When you choose to suffer in silence you close yourself off to support, you close yourself off to empathy.

Since sharing my patient journey in November 2014 with the public, I’ve realized the power of empathy. How it feels when those close to you and complete strangers reach out to offer support, words of advice and choose to show compassion. By definition, empathy means, “the ability to understand and share the feelings of another.” The definition of sympathy is “feelings of pity and sorrow for someone’s misfortune.”

When we choose to share our story, we open ourselves up to not only support, but criticism. People who believe we are advocates as a way of seeking attention. People who try and dumb down our personal experiences because they feel we share to get pity. People who believe we want others to feel sorry for us. This could not be further from the truth.

I share my experiences with Crohn’s disease as a way to inspire and educate.

I’ll always remember how my cousins and brother rallied around me at the Take Steps Walk in Chicago.

The last thing I want is for someone else to feel sorry for me. There is no reason to act like I have it worse than you or that you feel bad I’m not “healthy.” I am healthy, I just have a chronic disease that makes my life a little more challenging than yours. The challenges Crohn’s has brought into my life have been difficult, emotional and trying—but with each setback, comes a much stronger comeback. I am stronger and better for the trials I have been faced with.

I don’t want your sympathy. I want your empathy. I want you to reach out and see how I’m doing, because you genuinely care. I want you to show interest when I bring up my disease, rather than change the subject…or walk away. The lack of empathy and disinterest hurts more than anything. It shows you who’s a surface friend…and who is a real one.

I was hospitalized six months into my relationship with my husband. His support was amazing from the start.

Think about how you’d like to be treated and talked to, if you dealt with an invisible, chronic illness that wreaked havoc on your body without warning. A disease that you do all you can to control with lifestyle and medication. A disease of constant unknowns.

When you conversate with those in the chronic illness community—think before you speak and please choose to be empathetic, rather than sympathetic. Your efforts may seem minimal to you, but they mean more than you know.

Liquid diets: How to thrive and what to avoid

March 5, 20181 Comment

When you battle inflammatory bowel disease, chances are there will be several times throughout your journey where you are limited to only drinking liquids—whether it’s preparing for an upcoming procedure or needing to rest your bowel during a flare-up. It can be extremely dreadful to function in a workplace or in a social situation, when you’re limited to drinking liquids or sipping on some broth.

When I was a news anchor in Springfield, Illinois, I used to interview and participate in cooking segments with a registered dietitian named Amanda Figge. She is extremely passionate and well-versed about nutrition and health and practices what she preaches in her daily life.

“Nutrition holds the key to the difference between going on or off certain medications, improving your performance and strength at the gym, raising energy levels, and reducing pain and inflammation, to name a few. There is no one-size-fits-all approach to healthy eating,” Amanda explains.

One of Amanda’s recent posts on social media really peaked my interest. She included a photo of Ensure. If you have IBD, chances are you’ve relied on these at some point. I know I have. In her post, Amanda wrote:

“Ensure is one of the worst “nutritional” beverages to supplement in the diet. Yes, I fully understand the body just needs to receive nutrients in any way, shape or form it can. But when longevity and health are a prime concern, QUALITY should be a priority. As you can see, Ensure provides an assortment of vitamins and minerals, but in order to get those nutrients, you have to consume a bottle chalk-full of chemicals and high-inflammatory agents.”

She went on to say:

“Sugar is the third ingredient. Corn maltodextrin is a highly processed refined carbohydrate. Soy protein should be avoided. Artificial flavors/sweeteners are no way to treat the body nicely. You’re basically consuming a multi-vitamin that was covered in sugar, lit with a cigarette and left in the middle of a freeway during rush hour traffic.”

Whew. Intense. If you’re like me—and have depended on these meal supplement drinks when you’re in the hospital, fighting a flare at home or struggling to eat—those words probably struck a chord with you, too. Amanda’s focus is to heal the body with whole foods and eliminating potential sources of inflammation. Inflammation is the immune system’s first response to an acute or chronic condition. Chronic inflammation can be caused by cancer and its treatments, autoimmune disorders such as fibromyalgia and Crohn’s, metabolic complications such as diabetes and even neurological conditions like depression.

“While I believe it’s important for all people to practice low inflammatory eating habits (focusing on a whole foods diet and limiting processed foods, chemicals and added sugars), it is especially important for individuals experiencing chronic inflammation to adopt these protocols. Ensure is often provided to those undergoing chemotherapy or recovering from a bowel flare-up. While it may be appropriate for some, creating a homemade nutritional supplement can have far less chemicals and more immune-boosting benefits,” says Amanda.

If you’re put on a liquid diet to calm your bowel and to heal, avoid lactose, gluten, sugar-substitutes and soy. Making homemade shakes allows you to have complete control of the nutrients you are putting into your body. Here are two of Amanda’s favorite smoothie recipes:

Creamy Chocolate Banana Smoothie

1 scoop of chocolate whey protein isolate (lactose-free and naturally sweetened)
½ frozen banana
½ small avocado
1 spoonful of peanut butter or almond butter
Handful of ice cubes
Unsweetened almond milk (1/2 cup- 1 cup)

Blend all ingredients in food processor or mixer. Using less almond milk will make the smoothie extra rich and thick.

Berry Bliss Smoothie

1 scoop vanilla whey protein isolate (lactose-free and naturally sweetened)
½ -1 cup frozen blueberries
½ frozen banana
1-2 handfuls of spinach
Unsweetened almond milk (1/2 cup- 1 cup)

Blend all ingredients in food processor or mixer. Using less almond milk will make the smoothie extra rich and thick.

Another option instead of whey protein isolate would be collagen peptides. These specific amino acids can additionally help support proper gut function and strengthen immunity. L-glutamine powder is an additional supplement Amanda recommends that promotes gut healing. This powder can easily be added to smoothies and beverages.

I don’t know about you, but the next time I’m on a liquid diet, I’m going to take Amanda’s advice to heart. While we may not have control of our well-being with Crohn’s and ulcerative colitis, this knowledge and background enables us to grab the reins and give our body the best shot to heal, in a healthy way.

Taking on fatigue as a mom with Crohn’s disease

February 19, 2018February 19, 20186 Comments

I hear my baby saying “mama” gleefully from the playpen. Anxious for attention and snuggles. I hear this as I’m sitting on the toilet with the door open, paying the price for the cup of coffee I just consumed. It’s one of those days as a mom with inflammatory bowel disease. The all-encompassing fatigue is taking hold. I knew this the minute my eyes opened, and I heard Reid in his crib, despite a restful eight hours of sleep. If you don’t have IBD you may wonder what I’m talking about.

Let me try my best to paint a picture for you. My legs feel like complete jelly. My brain feels in a fog. I feel so lethargic; the thought of showering seems overwhelming. I’m not in pain. My stomach feels fine. But, there’s something “off” and you feel it with every part of your being.

As my husband helps me unload the dishwasher, I tell him, “I’m so fatigued”…he laughs a little and says, “well, you’re 34…you are getting old.” I explain to him it’s my Crohn’s. Sure, I may be in “deep remission”, I haven’t been hospitalized with a flare since my bowel resection surgery in August 2015 (*knocks on all the wood), but that doesn’t mean the disease doesn’t impact my daily life. My husband is amazing and never says anything malicious, but unless you live it, you simply can’t comprehend it.

I’m going to be vulnerable here. Please no judgement. The clothes I washed more than five days ago, are still in the dryer. Each day I told myself I needed to walk down 13 stairs and bring them up, but it felt like too much. This morning as my husband got ready for work, needing his jeans…I remembered…they were still in the dryer. I felt like a failure. As I rocked my son in his nursery today, it took too much out of my legs to be in motion. All I was doing was sitting, his little body on my chest. But the rocking felt like too much. As I laid him down for a nap, I went back and forth in my mind about whether I could muster up the energy to shower. I chose to. Mid-shower, I had a brainstorm to sit down on the seat and take some deep breaths while the warm water hit my body. When I stood up, I honestly couldn’t remember if I had put shampoo in my hair yet or if I had washed my face. Literally no clue. These are just a few examples. But this is the reality of being a mom with IBD.

I started beating myself up over the fact that the past two days I may have overdone it. Living in the Midwest, I didn’t want two winter days with temps in the 80s to pass without enjoying them. I knew the fresh air and exercise would be a welcome excursion for my little man and me. Did those two walks with the stroller push me to my limits? What is too much? What is not enough? At 34, you feel lazy when you can’t keep up or have to admit you’re just too tired. You look perfectly fine on the outside, you feel like those around you wonder if you try and take advantage of your disease.

Here’s my advice for anyone with chronic illness, specifically IBD, especially the parents out there.

Try not to beat yourself up over it. This too shall pass. You won’t feel this fatigue every day. As a matter of fact, days ago I had the music playing and I was dancing around with my son as I cleaned the house. I felt SO happy and so energetic. Focus on those times to get you through.
Self-care, self-care, self-care. Whether it’s going to get a massage, exercising, sitting on the couch and enjoying some tea or going to Target to shop by yourself. Do what makes you feel at ease. Do something for yourself every day.
Vocalize your exhaustion. If you don’t communicate your struggles, you won’t receive the comfort and help that you need. You are not admitting failure. You’re not waving a white flag and giving into your disease. Rather, you’re being strong enough to realize, in this moment, on this day, you need a little boost from those around you to get by.
Ask for help. Boy do I struggle with this. But, it’s imperative. Especially for first-time moms. Being a parent is hard work. Being a parent with chronic illness is on a whole different level. Hold your tribe close and call on them when you need them. You won’t regret it.
Rest. It’s ok to lay on the couch if you aren’t feeling up to doing chores. It’s ok to say no to a night out with friends. Give your body what it needs. Listen to it. This fatigue is real and by not listening, you’re only feeding into the problem more. You’ll thank yourself later.

I recently came across a statistic this week on Twitter from the Congress of ECCO (European Crohn’s and Colitis Organization) that stated, “Fatigue in IBD is experienced by up to 86 percent of patients with active disease and 41 percent in remission.” It’s crazy how common this is! For people with IBD, fatigue can be physical, mental or a combination of both.

Fatigue has a significant impact on the quality of life and needs to be talked about. If you’re like me and feeling fatigued, I hope you feel empowered to share and do what you can to combat it. Just know you are not weak, you are not lazy, fatigue impacts everyone on this journey differently. And most importantly, you are not alone.

A Valentine letter for Crohn’s

February 12, 20185 Comments

Yes, you read that title correctly. I used the word ‘Valentine’ and Crohn’s in the same sentence. I’d be lying if I said I would have been able to do that years ago. Hate would have been a more relatable feeling and word. As Valentine’s Day approaches and love is in the air, I’m choosing to look at my disease with my whole heart and to share my feelings with you.

If it weren’t for my Crohn’s I wouldn’t know my strength.

If it weren’t for my Crohn’s I wouldn’t have my perspective.

If it weren’t for my Crohn’s I wouldn’t know the meaning of a “feel good” day.

If it weren’t for my Crohn’s I wouldn’t be able to empathize with others on the same level.

If it weren’t for my Crohn’s I wouldn’t be able to see people’s true colors.

If it weren’t for my Crohn’s

I may have ended up marrying a person who really wasn’t about being with someone in sickness and in health.

If it weren’t for my Crohn’s I’d feel invincible and take my health for granted.

If it weren’t for my Crohn’s I wouldn’t be me.

In life there are triumphs and there are challenges. There are stresses and there are successes. There are highs and there are lows. I find embracing the good, the bad and the ugly enables us to reach our potential. The painful, low points are difficult in the moment, but in hindsight they push us to our limits and show us all what we are capable of.

People often ask me if I wish I didn’t have Crohn’s disease. I find it to be a loaded question. I’ve gotten to the point in my patient journey where I wouldn’t change a thing. So much of taking on this chronic illness is your attitude. There’s no sense in wondering and wishing for something that is not possible. Once you take a deep breath and stop living in your healthy past you come to realize that you were given this hand of cards for a reason.

Your voice, your experience, your journey has the power to inspire. You have the ability to change lives. You have the opportunity to show that invisible illness and everything that comes along with it doesn’t need to destroy your dreams.

While I know some days, weeks and months are going to be treacherous in this journey, do yourself a favor and stop being so hard on yourself. Love yourself. Love all of you. Even the part of you that is broken on the inside. I’ve been through the flare ups and the scares. I’ve overcome pain that causes me to pass out. I’ve weathered the storm of being wheeled into surgery. I’ve done hundreds of injections and blood draws and pokes and prods. At the end of the day, you rise. You take those steps to heal. You focus on getting better. You do all you can to make it through. Crohn’s and any chronic illness for that matter gives you this opportunity over and over. So, while we all tend to have negative feelings about our health and worry about what the next hour will bring, try and pause and stop for a moment. Think about all the beauty and insight it’s provided—and love yourself and your disease for a second.

XOXO,

Natalie

lights camera crohn's

an unobstructed view

Tag: health