Tag: life with Crohn’s

Why I refuse to mourn who I was prior to Crohn’s: A birthday reflection

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This week, I turn 36-years-old. Birthdays are a time of reflection, celebration, and excitement. Last month marked 14 years since I was diagnosed with Crohn’s disease. A chronic illness that has shaped my adult years and my identity.

I recently saw a post on Instagram about imagining life prior to illness. IMG-8194Prior to the challenges and the hurt that coincide with having a disease that you expect to have until your dying day. It’s heavy and can be overwhelming. There’s no cure for IBD and once you are told you have it, your world and your life is forever altered.

When I see childhood photos of myself and think back on my wonderful memories with family and friends through my college years, that girl often feels foreign to me. There are a few things I wish I could whisper in her ear:

“Stop taking your health for granted.”

“Soak in this feeling of invincibility.”

“Make the most of every single day.” IMG-8201

“Enjoy how carefree it feels to never have to worry about what the next day will bring.”

“Soak in the comfort of never needing medication or going through painful pokes and prods.”

“Have more empathy for those around you who aren’t as lucky.”

…the list goes on. Hindsight is 20/20. I can’t fault myself for floating through life the first 21 years. I’m glad I had no idea of what was to come. At the same time, I wouldn’t trade what the last 14 years have given me:

They’ve brought me debilitating pain that built my strength.

They’ve brought me sorrow that’s made the sunshine feel extra bright on my shoulders.

They’ve brought me fear that’s been replaced with resolve. 

They’ve brought me lonely moments that are now filled with the laughter of my little ones.

They’ve brought me years of feeling unlovable, but then finding magic with a man who never once shied away from my illness. image (66)

They’ve brought me extreme vulnerability that’s now coupled with gratitude. 

They’ve brought me scars internally and externally that I now see as battle wounds.

They’ve brought me years of embarrassment, that’s transformed to a scarlet letter that I wear with pride.

They’ve brought me feelings of worry that have been washed away by clarity and perspective.

On this birthday and moving forward, rather than mourn the loss of who I was up until age 21, I choose to celebrate who I’ve become the last 14 years. While this illness has tried time and time again to rob me of my joy, it’s provided me with evidence of my resilience. Since my diagnosis, I’ve worked full-time as a TV news anchor, reporter, and producer, I’ve gotten married, I’ve had two children in 21 months, and I’ve become a steadfast patient advocate. balls-1786430_1280Crohn’s has shown me that just because I get knocked down with a flare, doesn’t mean I can’t bounce back and be better. With Crohn’s, life often feels like you’re in the passenger seat and your fate is out of your hands. Rather than sit back passively, I choose to grab the wheel. Cheers to 36!

The patient physician dynamic: 5 tips for finding your match

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Raise your hand if you’ve considered switching physicians. Raise your hand if you’ve driven more than an hour to seek care. IBDSocialCircle2While attending IBD Social Circle at Digestive Disease Week in San Diego, I listened to a panel with Dr. Neilanjan Nandi, MD, FACP and Dr. Aline Charabaty, MD about the patient and health care practitioner dynamic.

It was an enthralling discussion that opened my eyes to the medical care available to the IBD family. They talked about how physician and patient relationships should not feel like speed dating. Seek a physician who truly cares about how IBD is impacting your life, someone who wants the context behind your symptoms. Rather than a physician wearing a white coat and sitting in front of you, look for one who sits next to you and leaves the white coat off.IMG-2081

If you’re constantly feeling like your GI is being complacent with your care or that you are just a number, you may want to consider finding a physician who’s a better fit. When doing so, it will take some effort on your part. Here are some tips to make the transition a bit less stressful.

  1. Look for a GI who specializes in IBD. Not every GI is passionate about Crohn’s or ulcerative colitis, it may not be their specialty. Finding an IBD specialist will put you in the hands of a care provider who knows the ins and outs of your disease.
  2. If you’re making a road trip to attend the appointment, let the office know. Before you drive hours for an appointment, let the nurses in the practice know that this isn’t a run-of-the-mill appointment. Maybe they can allot more time.
  3. Have your records sent over before you go. Provide the new physician with your back story, so they can familiarize themselves with your patient journey before your first face-to-face.
  4. If tests will be needed, see if they can all be arranged in one day. Save yourself a trip (or two) and check with your physician to see about them getting preauthorization for any tests or procedures ahead of time. This way insurance is notified and it’s one less headache to deal with down the road.
  5. Build a rapport with the nurses in the office. Don’t be afraid to lean on nurses for support. They are often the “middleman” between you and the physician. I rely heavily on the nurses in my GI office. Nurse Penny and I are buds!
  6. BONUS TIP: See if a family member or friend can attend the appointment with you. As the patient, sometimes it can feel as though the teacher from Charlie Brown is talking while we’re sitting in an appointment. So much is being thrown at us, so much is being said—but we’re not comprehending what it means for the present and the long term. By having a loved one by your side, they can take notes—so you can focus on asking the questions you need answered. That extra set of ears and eyes works wonders.

IBDSocialCircleSwitching physicians and entrusting someone new with your well-being is not easy. Trust your gut (for once!) and advocate for care that makes you feel like you have a voice. Think about how you feel leading up to an appointment, while you’re face to face with the physician and the emotions you may experience on that drive home. If anything makes you feel less than or not heard, connect with fellow patients in your area to see who makes up their care team. Do research about IBD specialists within drivable distance and take the steps you need to feel like you have your best ally against this disease.

Self-Love: Learning to love your body despite your disease

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Self-love. Self-care. These phrases tend to be thrown around quite often these days. At times they just sound like trendy buzzwords. But, they are important topics nonetheless.

Do you ever pause during your day-to-day routine and think about how you’re really doing—physically, psychologically and emotionally? When you live with a chronic illness like Crohn’s disease, taking time to honor all that you do to merely function and keep up with the general population is worth recognizing.

image8It’s not easy to be in constant battle with your body. It’s a challenge to feel pain often. It’s exhausting to always have a worry and a wonder in the back of your mind about how you’re going to navigate and overcome the next hurdle or setback thrown your way. This is why self-love is so important.

So, here’s my call of action to you. Rather than focus on all we’re unable to do or all that we struggle to do, it’s time we celebrate and recognize everything we CAN do. We are so much more than patients. We are people. It’s easy to wish about a life of perfect health, but despite how my disease has ravaged my small intestine and led to pain elsewhere in my body—whether it’s in my joints or from the osteoporosis in my back—I still manage to get up each day and live a very full life, with a perspective I never would have gained without this journey.

IMG_5494Since being diagnosed, this body of mine has still served me well. I managed to work full-time and live out my dream of working in television for the first ten years I had Crohn’s. I trained for and ran in 5ks, 10ks, 15ks and a half-marathon. I felt completely healthy and on top of the world on my wedding day (didn’t have one bathroom break!). My body was a safe haven for my children throughout pregnancy and allowed me to bring a healthy son and daughter into this world.

It’s those “accomplishments”, those big “wins” I choose to focus on. It’s the moments when I felt like my peers. It’s the times Crohn’s wasn’t top of mind and I felt like everyone else. halfmarathonIt’s when I felt invincible if only for a moment, whether it was crossing the finish line or holding my babies on my chest for the first time. It’s the victories along the way that help me push through on the difficult days and through the flares. Because while those times push me to the brink of breaking, I tell myself there’s only one option—and that’s to bounce back.

I’ve been that girl staring in the mirror wondering ‘why me’. I’ve been that girl with tears falling onto my thighs as I sat on the toilet hating that I had this dreadful disease. I’ve stood in the shower and watched the water hit my resection wounds and felt ashamed that my body was no longer scar-free. I’ve been all those things—but as the years go on and as my diagnosis days get further and further in the rearview mirror, that girl who wondered ‘why me’ is becoming a distant memory. That girl is now a woman, a mother, a wife and so much more. Crohn’s is a part of who I am, but it’s far from my identity.

By altering your outlook and your perspective and loving the person you are and the body you have—despite the physical and emotional scars left behind from past battles—you open yourself up to self-love. sophia40dayblessingPat yourself on the back for all the steps you’ve taken to rise up. Smile through the tears with the confidence in knowing you will get through this—one day, sometimes one hour at a time.

It’s ok to have bad days. It’s ok to struggle. That’s all part of it. Just make sure you give some extra care, love and attention to the person you see looking back in the mirror. You’ve been through a lot. And you’re still here. Fighting. Living. Breathing. Now all you have to do is believe in your strength and love yourself for your resilience.

 

 

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.