Month: December 2018

My top 5 wishes for those with IBD

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As we bid farewell to 2018 there is much to reflect on. Each year brings new experiences, relationships and opportunities. Some years leave more of an imprint on our memory and on our heart, than others. When you think back on the past 365 days what were the highlights? What were the low points?

IMG_4926For me—the past nine months I’ve been incredibly grateful to have another healthy pregnancy, that silenced my Crohn’s symptoms. I’m also celebrating 3.5 years of no IBD-related hospitalizations or ER visits! The cherry on top was the release of Citrate-free (pain-free) Humira this year! After more than a decade of giving myself the painful injection, the new formula has greatly improved my patient experience.

Here are my 5 wishes for you in the days ahead:

  1. Strength through difficult days

There’s no telling when the next flare will strike. We all know it’s not a matter of if, but when. When the going gets tough, take it one hour, one moment at a time. Try not to overwhelm yourself with worry. Go to your happy place and think back to past flares and all the hurt and pain you’ve overcome. Use the moments of your journey from the past that have tested you the most, to serve as your greatest source of empowerment. As the years go by, and your diagnosis seems like a different lifetime, use that to your advantage.

  1. Management of your symptoms

Remission is something that is possible, but there’s no telling how long it will last or for some, if it will ever become a reality. By getting your symptoms under control and well managed, whether that’s through medication, diet or both—your quality of life improves vastly. IMG_4768Celebrate the feel-good days and soak up the moments where your IBD isn’t top of mind. You have an innate sense of when your body is giving you warning signs that rough waters are ahead. Be mindful of the inner conversation going on in your head and listen to your gut. Although it tends to be our nemesis, it has a way of alerting us when things are about to get out of our control.

  1. Perspective about your experience

Use your patient journey and that of others to give you perspective. Empathize with friends and family members going through health struggles, whatever they may be. Sure, many people have it better than us, but many have it a lot worse. It’s not a competition to see who is the sickest, but rather a way of shifting our mindset and understanding that many people have struggles and we are not alone in our experiences. Like the saying goes, until you “get” a chronic illness, you don’t really “get” it.

  1. Support from those around you

Having a network of close family and friends to lean on at a moments notice plays a major role in how we take on IBD. Don’t be afraid to ask for help. Communicate the good and the bad, without fear of being judged or ridiculed. nyeblogTrust that those close to you love you and appreciate you for everything that makes you, you—including your disease. Show appreciation for your caretakers—those who live with you and are in the trenches by your side, day in and day out. Find comfort in those who allow you to be vulnerable when you need to be. Stop putting effort into relationships and friendships that don’t add joy to your life—eliminate the negativity, cut the fat, there’s no need for people who bring you down or belittle what it’s like to live with Crohn’s or ulcerative colitis.

  1. A health care team who listens

Find IBD specialists and gastroenterologists who enable you to be your own best advocate, who listen when you’re worried and address your concerns without making you feel less than or like a number. By trusting in your doctors and the care they provide you, you’ll feel much less stress about the path you are on as a patient.

Merry Everything, from my family to yours

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We hope the holiday season has been filled with love, joy, happiness and health for you. Thank you for your endless support and encouragement, kind words and feedback and interest in not only my patient journey, but also the well-being of my family. Whether we’ve connected on social media, through Lights, Camera, Crohn’s, by email or collaborations, I feel so grateful to have this platform to share my experience living with Inflammatory Bowel Disease every week of the year. You inspire me to be vulnerable. You inspire me to be strong.

I write and advocate in hopes of being the voice I so desperately needed when I was given a lifelong chronic illness diagnosis at age 21. Being able to lean on the IBD family virtually and in person is the gift that keeps on giving. We can all serve as a wonderful resource for one another, not only during difficult days, but also when we’re feeling on top of the world.

IMG_4950I hope you take this week to enjoy time with loved ones, relax and find time to care for yourself!

If we haven’t already—let’s connect on social media:

Instagram: @natalieannhayden

Twitter: @nataliesparacio

Facebook: Natalie A. Sparacio

Cheers,

Natalie

Ready to Roll: Charmin unveils its new “Forever” Toilet Paper Roll

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This post was sponsored by Charmin. Personal opinions and thoughts are my own.

Safe to say we’ve all been there. You’re in the bathroom. You look. No toilet paper. Not a fun predicament to be in, especially when you live with inflammatory bowel disease (IBD). Talking about bathroom habits is somewhat taboo, regardless of whether you have a health issue. It’s not usually a comfortable conversation to have with others. But, just like the children’s book states, “Everyone Poops” and it’s nothing to be ashamed of. IMG_4815

After living with Crohn’s disease for more than 13 years, I’ve spent countless time dealing with bathroom issues and worrying about accidents. It’s become a part of my life and daily routine. It’s a personal part of my patient journey, but it’s also something that I know I’m not alone in dealing with.

Here’s where the Charmin Forever Roll comes in. It takes away all the hassles of running out of toilet paper. The roll lasts up to ONE MONTH! And yes, boys and girls, it’s available in Charmin Ultra Soft, America’s softest toilet paper made with 2-ply sheets.

When it comes to dealing with flare ups, prepping for colonoscopies and recovering from surgery and hospitalizations, the Forever Roll takes the focus off the toiletries and gives you one less thing to worry about. When your IBD is flaring and fatigue is weighing you down, the “simple” act of making a quick run to the store for toilet paper or even changing the roll can seem strenuous, especially if you live on your own or if you’re building up stamina following abdominal surgery.

At first glance, the Forever Roll may look rather large IMG_4811and industrial to have in your personal bathroom. But reviews far and wide have been overwhelmingly positive!

As a stay at home mom who lives with IBD, oftentimes it’s just my 20-month-old son and I home together during the day. If the roll is out, I’m in quite the predicament. I’ll be adding a baby girl to the mix in a few weeks, so then I’ll really have my hands full! The Forever Roll is efficient and provides peace of mind.

“Charmin is always looking for to ways to improve the lives of consumers, and the Charmin Forever Roll delivers on a big tension: constantly having to change the roll of toilet paper,” said a P&G spokesperson. “By removing one more hassle in the bathroom, consumers can focus on other things without the fear of running out of TP.  Charmin hopes the Forever Roll alleviates this concern and provides a sense of relief for the IBD community with the same quality TP they know and love.”IMG_4837

Click here to order your Charmin Forever Roll Starter Kit. With the Starter Kit you get 3 Forever Rolls, free shipping and a FREE stainless steel roll holder. You have the option for a 1-user bathroom or a multi-user bathroom, so it’s perfect for any household.

Whether you live with IBD or if you’re the picture of health, we all need toilet paper to get through the day. I know I won’t miss opening the door and asking my husband to bring me toilet paper! Give it a go and let me know what you think.

A letter to my daughter, from your mom with Crohn’s disease

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My sweet daughter,

In less than 30 days you will be safe in my arms. It’s felt like a long journey to get to this point with you. Much like your brother, you’ve made me feel a sense of health that I never knew was possible. Through the creation of you and your life, I’ve found a deeper appreciation for my own.

You’ve silenced a disease that has ravaged my body for more than 13 years. _F6B0473You’ve reminded me of what is possible and what I’m capable of. You’re already an inspiration to me and you don’t even know it.

For as long as I can remember, I’ve hoped and dreamed for you. A daughter. A best friend. A relationship so sacred, so unique. Words don’t do justice for how anxious and excited I am to bring you into this world.

Just like your brother, you will see me struggle some days. Not with being your mom, but with my Crohn’s disease. It pains me to think about making you worry about my health or question when my next flare up will be, as leaving you and Reid for an extended hospital stay will be so tough on me and on our family.

I never want you to feel scared or question my resilience. Instead, I want to show you how strong I am and instill a positive attitude in you from a young age. You will witness the highs, the lows and everything in between that comes with chronic illness, but trust that mama will always come out on top. _F6B0340You and your brother serve as my greatest motivation to push through the pain and be strong. You’ll see how your dad loves and nurtures unconditionally and rises to every challenge that comes my way.

Here are my hopes for you.

A kind, happy heart. Always try and see the best in others, rather than coming to quick judgement. Soak in the happiness bestowed upon you each day and light up the room with your smile, even when the going gets tough.

A confident attitude and demeanor. Stand tall and be proud of who is looking back at you in the mirror. Love yourself for all that you are and don’t let any person make you question your worth.

A compassionate, empathetic mind. Recognize the pain of those around you, and be supportive, thoughtful and caring. Be a positive light in the lives of others.

A patience with yourself and others. Understand that life has setbacks, disappointments and pain, but that God has a plan for you. Trust in it, even when the path seems daunting or overwhelming. Try and use each challenge that comes your way as a moment to learn and grow.

A strength to use your voice. Never be afraid to speak up, be heard and communicate your hopes, dreams and fears. Feel empowered by your voice and know that everything you say and think matters._F6B0313

A life without Crohn’s disease. While there are many qualities I would love to share with you—I hope and pray you stay healthy and never receive an IBD diagnosis. I will be there every step of the way, should that ever happen. I’ll be your best advocate and your closest confidant in sickness and in health, and always.

See you soon, my sweet girl. My rainbow baby. My darling. Someday you’ll know how you’ve made my heart fill with such joy and immense gratitude.

Mama

Food for thought: What it’s like to get all your nutrition through an IV with IBD

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This week–a guest post from an IBD advocate who continually inspires me. Meet Sonya Goins. twibbon-profileShe is a news reporter for a community television station in the Minneapolis/St.Paul area. Sonya is also a Crohn’s patient, diagnosed with the digestive disease in 1985 while she was in college. I’ll let her take it from here:

While fighting the physical pain of Crohn’s is tough, the mental aspect is even harder.

On January 3rd, 2018 my doctor put me on TPN (Total Parenteral Nutrition), which means I was fed through my veins. All of the nutrients I needed to survive were in an IV bag and pumped through my veins throughout the day. My doctor wanted to give my colon a rest so ulcers could heal.  I endured this treatment for eight and half months.  It was one of the most trying times of my life. No food, just water, broth and on occasion, coffee.

Despite my circumstances, I named my IV catheter “hopeful.” 26677835_10155748847937819_1006971807936260031_oHowever, it took me a minute to adapt a positive inner attitude.  You see, in public I put on a good, cheerful attitude. There were times when I wanted to crawl up into a big ball and shut out the world. The first few weeks of constantly wearing a backpack full of IV fluids were very hard.  I did not like what I saw in the mirror. I was angry at my situation.  It wasn’t until I visited a pediatric Crohn’s and Colitis Foundation support group that I changed my way of thinking. Seeing young people living with the digestive diseases, and going about their lives despite their circumstances, motivated me to do better.

I had to live my new normal to the best of my ability.

The mental game of TPN

Mentally, not eating real food was very, very challenging.  Although I could not eat, I still cooked for my youngest child. The smells of the food made my mouth water, tempting me to taste what I know would make me sick. There were a few times I lived on the edge and took a sample. I paid for my mistakes—painful cramps and bloody diarrhea were my punishment.

After the first month on TPN, I knew I needed professional help if I were to survive.  So, I sought the help of a therapist.  I also prayed and meditated—a lot. 35682318_10156164555637819_6627378019424010240_n

First, I needed a distraction for when I was tempted to eat. A friend taught me how to crochet. She even purchased the yarn, hooks and beginner books to get me going.  I still cannot do a granny square, but I learned a new skill.

When times were bad and I wanted to give up, I would mentally go to my happy place—Turks and Caicos. Several years ago, I visited the Caribbean Islands. I imagined myself sitting on the pristine beaches, watching the waves crash.

The social impact

The loss of social invitations also did a number on me.  Some of my friends did not want to hurt my feelings by eating in front of me, so they stopped including me. However, I did have one friend who went out of her way and found a restaurant that served the best broth in town. We sipped on broth and caught up with each other’s lives. This was one of the highlights.

I was determined not to let this situation get the best of me. Instead of going out to eat with friends, I invited friends to go for a walk. I walked with former coworkers, acquaintances and family members.  The fresh air and good conversations did me a lot of good.

Taking steps to heal mentally and physically

Walking became my foundation. I was motivated to walk for another reason.  Before I got sick, I signed up for several half marathons to raise money for the Crohn’s and Colitis Foundation. I finished the New Orleans half marathon in March, just three months into my treatment. I have never been so proud.  I had to walk the race, but I finished. Several months later, I also completed the Twin Cities 10 mile race, and the Savannah half marathon.

My unexpected journey made me stronger mentally and physically.  I am more outgoing and more self-assured than ever before.  After all, you cannot be shy walking around with an IV bag strapped to your body.

I share my story to give others hope.

Sonya Goins is also a Crohn’s and Colitis Foundation Board Member/MN Dakota Chapter.  You can find her blog at SonyaStrong.com. She also has a podcast on iTunes and GooglePlay entitled “Conversations about Crohn’s and Colitis.”

My Cause My Cleats: How Chicago Bear Anthony Miller is Representing IBD

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When Chicago Bear standout rookie wide receiver, Anthony Miller laces up his cleats to take on the Los Angeles Rams this Sunday, his cleats will tell a story. A story many may not be aware of. Anthony’s longtime girlfriend, Alexandra Pounders, has battled Crohn’s disease for nearly 10 years. She was diagnosed at age 14. IMG_4488

This Sunday (Dec. 9), Anthony will participate in the NFL’s My Cause My Cleats campaign, as a way to spread awareness for inflammatory bowel disease (IBD) and show support to his girlfriend. Anthony’s cleats will feature the Crohn’s and Colitis Foundation.

“Being able to bring awareness about IBD through football means a lot to me. When I wear these cleats against the Rams, I’m not only going to be representing my girlfriend Alexandra, but also the millions of people across the globe who suffer from this disease,” said Anthony.

This is the third year for the My Cause for Cleats effort. It’s a way for NFL players to take steps to visually show their support for causes near and dear to their hearts. Anthony and Alexandra have been together almost five years. Alexandra says Anthony has been there for her every step of the way, whether it’s attending doctor visits or motivating her to stay strong during setbacks.

“It feels amazing to know there is someone by my side who cares so much for me that they want to spread awareness about this illness. IMG_4487Anthony has seen me fight for so long. It makes me feel like I’m not going through this alone,” said Alexandra.

“We are thrilled to see several NFL players, including Anthony Miller, raise awareness of Crohn’s and colitis through this year’s My Cause My Cleats campaign,” said Michael Osso, President & CEO of the Crohn’s & Colitis Foundation. “More than 3 million Americans live with these diseases, and, like Anthony, even more are touched by them as loved ones of patients. Using their platform as professional athletes to speak out about Crohn’s and colitis not only helps educate the public about the seriousness of these diseases but also underscores how wide-reaching these diseases are and how important it is to have the support of loved ones.”

Alexandra’s advice to the IBD community is to put your personal needs first and try to keep stress to a minimum, while accepting support from others.

“Surround yourself amongst people who may not completely know what it feels like to be in your shoes, but people who are willing to be patient with you and love you on the days that aren’t so great. Focus on being the best possible you that you can be in every aspect…mentally, physically, emotionally and surround yourself amongst people who truly care about you, it’ll be so much easier to overcome the obstacles you face with this disease. Stay positive. Hold on tightly to your faith. And don’t let this disease define you,” said Alexandra.bears

Chicago is my hometown and where the majority of my family lives. As a Bears fan and as a Crohn’s disease patient advocate who was diagnosed in July 2005, seeing professional football players put causes like the Crohn’s and Colitis Foundation in the spotlight means a great deal. Check out the #mycausemycleats hashtag on social media to learn more about the cause.

Taking on Crohn’s to Get My Life Back on Track

This post was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.

Crohn’s and Colitis Awareness Week is December 1-7. If you have Crohn’s disease or ulcerative colitis, get tips from gastroenterologist Dr. Corey Siegel, a Crohn’s disease and ulcerative colitis expert, by visiting the online Expert Advice Tool before your next trip to the doctor’s office.

The gnawing abdominal pain. The frequent trips to the bathroom. The fatigue that hit me like a ton of bricks. It all became my “normal” the first few years following my diagnosis of Crohn’s disease in July 2005. During that time, I did everything I could to put a smile on my face as I reported the news on television stations in Minnesota and Wisconsin. While I loved sharing other peoples’ stories, I never wanted my own struggles to be uncovered while I was in the spotlight.

I am one of approximately 700,000 people in the United States affected by Crohn’s. Once I left the news desk in 2014, I felt it was the perfect time for me to share my struggles and become a vocal advocate. Rather than keep my story in the shadows, now, I share my journey proudly with hopes of helping and inspiring others as an IBD patient advocate and blogger.

Crohn’s and Colitis Awareness Week (December 1-7) is a time to educate others about IBD and empower those who may be struggling with their disease. It’s a time for patients and caregivers to speak up and use their voices to show that IBD doesn’t need to hold you back from experiencing all that life has to offer. It doesn’t need to prevent you from accomplishing your dreams. It doesn’t need to isolate you from enjoying a full quality of life. That being said—it takes effort on your part to listen to your body, recognize the symptoms and manage them accordingly with your health care team.

Crohn’s disease is a chronic inflammatory bowel disease (IBD) characterized by inflammation of the gastrointestinal (GI) tract. It can affect any part of the GI tract, from the mouth to the anus, and is not contagious or caused by food. IBD is a progressive disease, which means it can get worse over time if you are not proactively managing it. It’s also an invisible illness – I look like everybody else, no matter how I’m feeling on the inside. Those with IBD often internalize their struggles and keep their pain to themselves. It’s as if an inner conversation begins with every meal or beverage, moment of stress or excitement and twinge of pain.

In July 2008, almost three years to the day following my initial diagnosis, I found myself dealing with Crohn’s symptoms spiraling out of control. I was the morning anchor for ‘Wake Up Wisconsin.’ Deep down, I knew something wasn’t right. I was headed home to Chicago to celebrate the Fourth of July with family. I ended up being hospitalized over the holiday with an abscess the size of a tennis ball in my small intestine. I watched the fireworks reflect off my hospital room window with my mom. I felt broken and exhausted by yet another setback.

My gastroenterologist entered the room and talked candidly with me about the need to change my treatment plan to minimize the progression of my Crohn’s. While it was a daunting and emotional conversation, it’s a conversation that changed my life as a young woman with Crohn’s. I had my whole future ahead of me. I knew I needed to make changes and get my life back on track.

I’m here to tell you that despite my diagnosis of Crohn’s at age 21, I was still able to accomplish it all. The first decade of my disease, I worked full-time in the television business and spent time at a public affairs firm. I fell in love with an amazing man who sees me for so much more than my disease. We got married in 2016. We have a healthy toddler and we’re expecting a baby in 2019.

Crohn’s has shaped my perspective and shown me the strength I possess within. It’s taught me to slow down and listen to my body and to appreciate the beauty of a ‘feel good’ day. My IBD journey has been one of highs and lows, smiles and tears, and everything in between. I wear my IBD diagnosis as a badge of honor because it’s something that has tested my strength and perseverance, but it hasn’t robbed me from becoming all I want to be.

If you have Crohn’s, it’s important to work with your doctor (sooner rather than later) to create a monitoring and treatment plan focused on long-term success and minimizing disease progression. Prepare for your next doctor’s visit with the help of gastroenterologist Dr. Corey Siegel and the online Expert Advice Tool.

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Disclosure: This post was sponsored by AbbVie Inc., a biopharmaceutical company, and should not be construed to constitute medical advice. Personal opinions and thoughts are my own. I am not a medical professional and am not qualified to give medical advice. Please talk with your doctor about your individual medical situation.