Why as a mom-to-be with Crohn’s disease I’ve decided not to breastfeed my son

Breastfeeding. It’s amazing how controversial this topic is and how critical and opinionated people can be. Since I announced to family members and friends this past summer that I was pregnant with my first child, I’ve quickly learned the majority of people naturally assume that’s the route you’re going to go. Whether it’s casually mentioning the best breast pump or laughing about nursing pads to put in your bra—it seems no one expects you to formula feed your child. People are vocal and proud of breastfeeding—and I don’t have a problem with that. What I do have a problem with is people who judge and make you feel like you are depriving your child and being a “bad mom.”

I’ve thought about it for years…as a woman with Crohn’s disease my health and the medications needed to treat my illness make it a whole diffeimg_5797rent ball game. While I expect there will be many naysayers and people who question my decision—it comes to this. It’s my son and it’s my personal choice. While doctors and people say “the molecules are too large in Humira to pass through breast milk,” it’s always followed up quickly by…BUT… there are no long term studies.

Humira first hit the market in 2002 for rheumatoid arthritis…it wasn’t even approved by the FDA to treat Crohn’s until 2007. I started giving myself the injections in July 2008. In my heart of hearts, I don’t feel comfortable knowing that 20 years down the road unknown long-term health effects could start popping up. It’s just not worth the risk or the wonder on my part. My baby and I are part of five-year study that looks at Mother and Baby and the response to biologic medication. For more information, click here.

My mom was on the blood thinning drug Heparin while she was pregnant with me and after she delivered. As a nurse, she too made the decision back in the 80’s to formula feed my brothers and me because she wasn’t sure about the long-term effects of those injections. I always appreciate that she looked out for us. It’s my hope that my son will have the same appreciation for my decision to follow in her footsteps.

It’s helpful to have my regular OB, high-risk OB and gastroenterologist all in my corner. I had a glimmer of hope about possibly breastfeeding my future kids after my bowel resection surgery in August 2015. In order to heal, I was off all medication from July to mid-November. I started whimsically thinking about a life without medicine and what that would mean for not only me, but also my family. Then reality and some harsh words from my GI doctor brought me back to earth. Not taking medication when dealing with Crohn’s is like playing Russian roulette. You may be “ok” for a couple of months or years, but the likelihood of needing additional surgeries and dealing with flare-ups skyrockets.

Aside from the medication, living with Crohn’s can be extremely scary. One hour you’re fine and the next you’re being rushed to the hospital. I’m so fearful of a postpartum flare and parenting while dealing with debilitating symptoms. I don’t know when I’ll be in the hospital next or when I’ll need to be on additional medications that aren’t safe for my son. For now, being pregnant has magically silenced my disease. While pregnancy has its fair share of discomforts, struggles and pain, my baby boy has taken my Crohn’s and shown it who’s boss. He’s truly the healing hands where it used to hurt.

There’s no telling how my health will be post-delivery and in the years ahead—but, it comforts me to know that my Crohn’s and medications don’t need to be tied to him in any way once he enters this world. It’s difficult enough giving myself injections and taking pills throughout the entire pregnancy. I want to free of him any link to what I’m taking. If you google IBD and breastfeeding the conflicting articles and research would make your head spin. One article will explore how breastfeeding can put you at greater risk for a postpartum flare, while the next says the opposite. With Crohn’s, nobody’s disease process is the same. I’ve found it’s best not to look at what the numbers show and compare yourself to others.

Now that I’m well into my third trimester I keep envisioning the first moment I hold my son and how he instinctively may try to start breastfeeding when he’s laid on my chest. It brings tears to my eyes—because I’m sure I’ll feel a sense of failure and that I’m depriving him of what many believe is best for his health.  But, it will also be my greatest accomplishment in life. Successfully bringing my son into the world will feel like a huge victory against the disease that has robbed me of so much, but made me stronger than I was before.

I know this article goes against what many mothers and people believe—it may cause you to try and sway my thoughts or make me feel guilty for choosing bottle over breast, but it’s my decision and I’m standing by it. Whether it’s discussions on Instagram or forums online, I’m amazed at how many women with Crohn’s constantly look for guidance on whether they can get pregnant, when they should start trying to conceive and if they should breastfeed…all because of their medication and their own personal health. I stand by all of you prospective mommies grappling with those questions and I’m here for you. Follow your heart. Do what’s best for you and your child. And while it’s easier said than done, stay true to what you feel most comfortable with—because at the end of the day—no one knows your body or baby like you do.

I’ll leave you with a quote from Barbara Katz, “Birth is not only about making babies. Birth is about making mothers: strong, competent, capable mothers who trust themselves and know their inner strength.

Celebrating six months of Lights, Camera, Crohns: An Unobstructed View

Today marks six months since I took the leap and launched my blog. It’s been such a cathartic learning experience thus far. I appreciate all the support, feedback and kindness I’ve received whether it’s over social media or email. As you can imagine—it’s daunting to open up about life with a chronic disease and coming up with a story idea each week isn’t always the easimg_5751iest! But, I’m happy with where the blog has started and excited to see what the future holds.

I found out I was pregnant two days after I started this blog. Now, I’m more than 30 weeks pregnant! It’s been so exciting to share the journey with you all. I’m excited to be a mom and to continue to share thought-provoking content about living life with a positive state of mind while battling Crohn’s.

Here’s a snapshot of the top three most read stories on the blog:

  1. Living each day with a “Jade state of mind”
  2. 11 years ago today, a bittersweet anniversary
  3. I have Crohn’s…and I’m going to be a Mom!

Over the last six months, more than 8,000 people from around the world have checked out a story on Lights, Camera, Crohns. Crazy to think there are readers in New Zealand, Angola, Switzerland, Ireland and Brazil… just to name a few!

I’m always looking for story ideas and topics that interest you. Send ideas to: lightscameracrohns@gmail.com.

Thank you SO much for taking the time to read my stories, educate yourself about inflammatory bowel disease and inspire me to open up about a subject that is often not discussed.

Cheers to many more months and years of Lights, Camera, Crohns…I have a feeling the best is yet to come!



The Affordable Care Act: A voice for those with pre-existing conditions

Pre-existing conditions and politics…while I consider myself to be well-versed on the first topic, I don’t ever pretend to be an expert on the latter. That being said—in recent days there have been countless headlines about efforts to repeal the Affordable Care Act. Just like anything in life, Americans are divided about the need for universal coverage. Polls largely show that while a majority of people oppose the law, a wide majority oppose repealing it all together. I’m not one to share my political allegiance or get into conversations about politics, but it’s difficult to ignore the outpouring of concern among not only fellow Crohnies, but anyone who lives with a chronic health condition.

It’s one thing to repeal the ACA, it’s another to do away with it without a replacement program in place to make it better. Seventy rallies to defend the law took place over the weekend from Maine to California—this is an issue that impacts the quality of life for millions of Americans.

As a Crohn’s patient of nearly 12 years—medical bills from doctor visits, routine scopes, daily medications, blood tests and hospitalizations are extremely overwhelming. For instance, two injections of Humira (a month supply) is nearly $2,500 (without insurance). Limg_8385uckily for me, I’ve been fortunate to have insurance coverage from my employers through the years and been able to take advantage of some drug-savings cards. As a soon to be mom, and a wife, I never want my health costs to hinder my family, you feel enough guilt as it is battling a chronic condition in the first place. It’s physically, mentally, emotionally and financially exhausting on not just the patient, but also the caretakers.

When I graduated college in 2005, my parents put me on a private insurance plan to cover me as I looked for my first TV job. They got the coverage when I was a “healthy” 21-year-old, two months later I was diagnosed with Crohn’s disease. Timing was everything. I can’t even imagine how difficult it would have been to pay the premiums and cover my initial hospital stays, tests, 22 pills a day, etc… as an unemployed, uninsured, 21-year-old college graduate.

My heart hurts for those who hit a crossroads—deciding to take medication, seek treatment and drown in debt, or go without and let your disease spiral out of control. I came across this story from a woman named Jean:

“What many take for granted, the health of their children, is a constant worry for us. Our daughter has Crohn’s disease, a chronic illness that requires she have Remicade infusions every 8 weeks to stay in remission. At close to $20,000 each, her medical costs are almost $150,000 per year. Without insurance, she can’t afford this. We can’t afford this. Can anyone? Repealing the ACA may work if you have a great job with insurance benefits but what is a college student to do? What is a new graduate to do? What is a person without a full-time job supposed to do? She doesn’t even have a chance at a job when one considers the cost of providing insurance benefits. She can work if she gets medical care, but without it, she will die.”

While on Twitter, I saw a new website called: Faces of the ACA. The website is run by a team of volunteers dedicated to the countless Americans who depend on ACA for survival, it features roughly 100 personal stories. According to a December survey from the Kaiser Family Foundation:

  • 85 percent of the public supports the provision that allows young adults to stay on their parents’ insurance plans until age 26.
  • 83 percent support eliminating out of pocket costs for preventative services.
  • 69 percent favor the provision that bans insurance companies from denying coverage on the basis of pre-existing conditions.

Speaking of pre-existing conditions, the Crohn’s & Colitis Foundation of America (CCFA) recently released the following statement urging Congress to maintain stability in insurance coverage for patients with chronic illnesses:

“For patients living with chronic illnesses like Crohn’s and colitis, healthcare coverage is essential to ensure they receive the care necessary to manage their complicated disease,” said Michael Osso, President & CEO of CCFA. “Our patients experience numerous barriers to care – including difficult utilization management protocols and high cost of care. Repealing the Affordable Care Act without simultaneously enacting a replacement would not only increase the barriers our patients have to combat, but it would leave many in limbo without certainty that they would have the insurance they depend on for critical doctor’s appointments, medications, medical procedures, and much more. If we are to repeal the Affordable Care Act, it must be done so in a way that provides a replacement that will ensure stability in coverage, maintains the basic patient protections enacted by the law, and prohibits insurer discrimination against patients with chronic diseases.”

Undoubtedly this is a very complex issue and there are pros and cons for the current law. Regardless of your stance, I think it’s important to take a moment and think about loved ones, family members and friends—maybe it’s even yourself—this isn’t just a political game, we’re talking about people’s lives and their health.

Think about how scary it would be to know you may not be able to continue medical treatments you need to manage your chronic illness, or perhaps even survive. Think about how stressful it would be if you had to choose between putting food on the table or getting the medicine you need to help you power through a work day. This is the reality for millions of people.

For anyone with Crohn’s…you’ve likely experienced the transformation yourself—from being healthy and not relying on insurance coverage to having a lifelong disease and becoming dependent on insurance to manage your chronic illness. Not only are you burdened with a chronic health condition, but you have to worry about whether you can even afford the drugs that will help manage your pain. Repealing the ACA without a suitable replacement that provides protection for patients with pre-existing conditions is like adding insult to injury.

I know what it feels like to go through your mail and receive multiple medical bills a day, it’s not easy—whether you have insurance or not. It’s an extra burden on your finances and your family. Circumstances and health can change in the blink of an eye; it’s easy to think you’re invincible until you become a statistic with nowhere to turn.

So what can you do amongst all the debate and discourse? Contact your Representative in the U.S. Congress here and your U.S. Senator here and share your story. If you sign up for 2017 health insurance no act of Congress can take that away from you once you’ve signed a contract with your insurance company. Enroll before the January 31 deadline. Get covered today at www.HealthCare.gov.

Biologics with a baby bump: Taking Humira while pregnant

It’s something I’ve done nearly 250 times, iced my thigh to help numb the area prior to giving myself a Humira injection. It’s a process that’s become part of life, nothing feels foreign about it. My last shot was different though. When I placed the ice pack on my leg it hit my pregnant belly for the first time. Immediately I started to get emotional. Then, my baby boy started kicking…over and over and over. The injection laid next to me on the coffee table, in its usual spot. My mind began to race—since I started administering the injection in 2008, I always stare at a photo of a family member or friend who inspires me or say their name out loud for strength as the needle needs to stay in 10 seconds to ensure all the medication is transferred. It’s been the perfect distraction from the pain up until now.

This time—I said my baby boy’s name. Sorry, not sharing it until he’s born…but, I said his name and it literally took away my pain. So many people in the Crohn’s community and anyone who depends on a biologic drug for relief can relate to not only what it’s like using this type of medication but also how big of a role it plays in family planning.

Humira belongs to a class of biologic medications. Biologics are genetically-engineered proteins derived from human genes. They are designed to inhibit specific components of the immune system that play pivotal roles in fueling inflammation. Crohn’s disease is linked to an overproduction of certain proteins, including one called tumor necrosis factor (TNF), which is produced naturally by your body’s immune system. Humira targets and helps block TNF by blocking its action in the body to help diminish inflammation that can lead to symptoms. Other biologics that may ring a bell: Remicade, Cimzia, Tysabri and Stelera.

I attribute Humira to helping me maintain a remission state, it’s been a miracle drug for me. That being said—as my baby and my belly continue to grow, I find myself counting down the number of injections I need to do (7 more!) before he’s herimg_5688e…as the medication does pass through the placenta. Humira is a category B drug. Category B drugs are considered “likely to be safe for pregnant women.” The category ranking means that studies of Humira in pregnant animals haven’t shown any risk to the fetus.

My regular OB, high-risk OB and gastroenterologist all have the same advice—stay on Humira throughout pregnancy, as the mother’s health needs to come first in order to stay ‘flare up free’ until baby arrives. Even though they’ve told me that multiple times, I find myself repeatedly double checking at every appointment.

Each woman and couple needs to do what they are most comfortable with. It’s all about looking at the benefits vs. the risks. It’s such a delicate balance. While not ideal, the injection provides me with the peace of mind that I’m doing all I can to keep my disease in check so my baby has the best chance for reaching a full-term birth. At 28 weeks and a few days pregnant, my Crohn’s has been nearly non-existent since my positive pregnancy test. (knock on wood!) I feel I owe the calmness of my disease to my unborn son and the injections that have helped me get to this place.


Embracing the unexpected in 2017: The power of positivity

New Year’s resolutions. It’s that time of year when coming up with ways to improve ourselves is all the talk. Rather than come up with a list of fitness feats and dietary goals, take a moment to breathe and focus on being the best possible you. When it comes to living with a chronic illness, one of the easiest pitfalls is to think of yourself as a “sick” person. I challenge you to alter this mindset in 2017, even if the road ahead seems bleak.

I fall victim to this more often than I’d like to admit. I’ll make comments to my husband about being a “sickly girl” or let my worries about a future flare up consume my thoughts on a daily basis. Crohn’s disease is often referred to as a debilitating disease. It is. BUT, what’s even more debilitating is constantly concerning yourself with the unexpected and keeping a laser focus on each symptom, pain and side effect from medication you may or may not be experiencing. While it’s important to be in tune with your body, it can be even more crippling to let your disease consume you.

When the going gets tough, remember to tell yourself you were given this life because you are strong enough to live it. This quote by Alex Elle speaks volumes about self-care and freeing yourself from negativity:

“As you make room for joy and prepare for change, release what no longer serves you. Anything that causes a disruption in your life should be left alone. Be mindful and intentional about what deserves space in your growth process and what does not.”

It’s healthy to rant and vent at times, but your struggles will overwhelm you and hinder your ability to fight if you let them. Let your difficult days serve as teaching tools that inspire others and provide you with somewhat of a magical ability to relate and understand those around you. Chronic illness is exhausting and emotional, but in my opinion it gives you superpowers. In those moments where you are pushed to your pain limit or experience a surgery or procedure for the first time, you gain a sense of strength you didn’t have befimg_5663ore. When a loved one or friend is facing hardship, you have the power to step back and provide unique perspective and compassion. What you’re enduring each day of your life is not a walk in the park, but each experience and fear-filled moment creates an everlasting shield that makes you, you.

I’ll leave you with this quote from William Arthur Ward as we embark on another year, a new chapter and a fresh start, “The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.”

Wishing you all the best on your journey this year around the sun, no matter what comes your way keep your focus on the beauty and the blessings around you and the rest will fall into place.