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

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.

 

 

The IBD Parenthood Project: Creating a brighter tomorrow for IBD women

This post is sponsored by the American Gastroenterological Association (AGA). I am a paid program Brand Influencer; this post is sponsored and includes my own personal experiences.

IMG_6040Family planning is exciting, nerve-wracking, and daunting. Couple those emotions with battling inflammatory bowel disease (IBD) and the experience can be downright overwhelming. The tide is changing though when it comes to pregnancy and IBD, thanks to the IBD Parenthood Project. For current IBD moms, until now, there was never a one-stop-shop for factual information. The IBD Parenthood Project website is a resource dedicated to ensuring we have all the knowledge we need to feel comfortable and at ease, as we bring a life into this world.

As a mom of two under two, who’s lived with Crohn’s for nearly 14 years, I often felt as if it was a “learn as you go” and “trust what you’re told” type of experience during my pregnancies. As much as I worked hard to educate myself and advocate for my needs with my care team, there was always a part of me that wondered if my decisions were the best for both me and for my babies.

The same can be said for IBD Parenthood Project spokeswoman, Crohn’s warrior and mom of two, Jessica Caron. Mom and boysWith two sons, ages six and three, she felt even more in the dark during her preconception discussions and pregnancies.

“If I had the IBD Parenthood Project as a resource when I was having my children, it would have provided me with answers to questions that kept me up at night. I felt so alone and didn’t have much support,” said Jessica. “I never felt like those around me understood the decisions I was making regarding staying on my biologic medication throughout the pregnancies and breastfeeding while on it. I truly believe the concerns came from a kind place, but if I had this resource to educate my support system, I would have felt more at ease going through that experience.”

Jessica attributes her passion for patient advocacy to living life in the trenches with IBD and realizing how difficult it was to make plans for her future – plans that impacted not only herself, but also her spouse and family.

“When I was diagnosed at age 21, there wasn’t much information available that was easily understandable and digestible. It would have been great prior to having my sons if I had the information right at my fingertips. The accessibility of the IBD Parenthood Project makes the information available to patients, their partners and their family members,” said Jessica.

Launched in January 2019, the IBD Parenthood Project was created with the patient in mind. Jessica, along with other IBD advocates, had a seat at the table alongside physicians and helped inform the Clinical Care Pathway.

31959676668_65b104d1b7_o“The IBD Parenthood Project is a huge win for the IBD community. This resource is paving the way for how we work together with our clinical team. This is a proud moment for the IBD family. We’re showing the health community how to work collaboratively with patients,” explained Jessica. “I never want women to feel alone in the process. This initiative empowers IBD women and their support systems, and makes the experience of bringing a life into this world a whole lot more enjoyable and a lot less worrisome.”

Jessica had a flawless first pregnancy, but unfortunately, dealt with a difficult flare-up nine months after delivering her son. Before she got pregnant again, she made sure she was in remission. If she were to get pregnant today, she says she would start talking with her IBD specialist months ahead of time, while coordinating care with her ObGyn. Jessica would also add a Maternal-Fetal Medicine (MFM) specialist into the mix.

For those who don’t know, an MFM specialist is an ObGyn physician who has completed an additional two to three years of education in training. You can think of them as high-risk pregnancy experts. For pregnant women with chronic health conditions, such as IBD, an MFM specialist works to keep us as healthy as possible as our body changes and as the baby grows.

On a personal level, I went into both of my pregnancies in remission and my Crohn’s disease activity was silenced. IMG_6032Upon delivering both of my babies, I felt symptoms start to creep back into my life less than a week after they were born. I too would include an MFM specialist in the future, if I were to have another child.

“I’m so glad to know the IBD women of today who get pregnant will have the IBD Parenthood Project resources and have better access to our community,” said Jessica. “As IBD women, it’s key to be proactive by discussing preconception planning and waiting to get pregnant until you’re in a remission state. Work closely with your care team, make a plan that is specifically for you, and stick with it.”

 

 

 

Breastfeeding as an IBD mom: Why I’m trusting my gut and following my heart

Before I start this article, I want to include a disclaimer. Breastfeeding is a very emotional and sometimes controversial topic. By no means are my words meant to make you feel guilty or ashamed if this way of feeding your baby doesn’t work for you. I’ve fed my children both ways. My son was breastfed for three days and then given formula. He is a picture of health. IMG_6935My daughter is 4 weeks old today and has been exclusively breastfed. I’m by no means writing this as an expert or to point any fingers. I am completely of the mindset that ‘fed is best’. No judgement here, ladies.

Through the years I’ve experienced the guilt and the worry, I’ve had to explain myself time and time again. I sat in labor and delivery classes at the hospital prior to the birth of my firstborn and felt like an outcast when I was the only one who didn’t raise my hand about planning to breastfeed. I’ve been on both sides of the ‘issue’…I write this article to share my perspective, my journey, and how my thinking has evolved as a mother. It’s a way of showing fellow IBD mamas that I understand the hesitation and all the inquiries. I get how it feels to wonder if you’re doing what is best for your baby and for yourself.

I can’t quite pinpoint when it was during my pregnancy with Sophia that I decided to try breastfeeding. I just woke up one day in the third trimester and decided it was something I wanted to experience this time around.

My son, Reid, turns two next month. During my pregnancy with him, I was adamant on not breastfeeding. IMG_6402I was worried about the lack of long-term studies on my biologic drug (Humira) and I was concerned about the risk of having a postpartum flare that would land me in the hospital and interrupt my ability to feed him. Being a new mom, I was worried the stress that comes along with breastfeeding could cause me to flare. I ended up breastfeeding him the first three days in the hospital, so that he could receive the colostrum. After that—he was given formula until he turned one. It’s a decision I was confident in, but that tugs at my heartstrings at times, especially now as I breastfeed his sister.

Biologics, pregnancy and breastfeeding

Since I was pregnant with Reid, I’ve done a fair amount of research. I’ve talked with fellow IBD moms, educated myself on the benefits of breastfeeding for baby and me and consulted with my care team ( ObGyn, high risk ObGyn and my GI). _F6B0561According to MotherToBaby, mothers who breastfeed their infants while using adalimumab (Humira) have very low levels of the drug in their breast milk. Adalimumab is not well absorbed by the gut, so any of the medication that gets into breast milk is unlikely to enter the baby’s system from the gut. Side note: MotherToBaby is a wonderful resource. I have participated in pregnancy studies for both of my pregnancies—it’s always helpful to contribute to research, share your journey, and help pave the way for future chronic illness moms so that there is more clarity for families in the future.

Like many moms who depend on biologic medication during pregnancy, that in and of itself can be stressful. I stayed on Humira for both my pregnancies—from start until finish. For Reid’s birth, I did my injection two days before my scheduled c-section at 39 weeks, 3 days. For Sophia, my last injection was at 37 weeks, 3 days. My injection was due the day of my c-section with Sophia, but a matter of days before—due to cold and flu season, my GI instructed me to wait to do my injection until I was home from the hospital. IMG_6937That way—the baby did not receive a burst of the immune-suppressant drug through the placenta, the day she was entering the world and I would be at lower risk of developing an infection as well. Timing your biologic medication is key and a conversation you’ll want to have with your care team so it can be tailored to your pregnancy and your personal journey.

The challenge of the journey

Breastfeeding is intense. It’s emotional. It’s rewarding. It’s exhausting and time consuming. I like to call it a labor of love. There are so many expectations, opinions and judgements that come along with the way we decide to feed our children. Until you experience breastfeeding, it’s hard to truly appreciate all the blood, sweat and tears (literally) that goes into it. Today marks four weeks I’ve been breastfeeding my daughter. For me—each week that goes by is a huge accomplishment.

I pump mostly—and put the milk in bottles. That way—anybody can feed the baby, especially if I’m feeling fatigued or if my Crohn’s is acting up. I wanted to introduce a bottle early on, just in case I were to be hospitalized with a postpartum flare. Sophia had her first bottle at six days old and has done a great job and has not had any “nipple confusion” when I nurse her.

It can be a bit overwhelming when you are the sole food source for another living being, especially when Crohn’s symptoms strike, and you feel like you may need to make a mad dash to the bathroom.

In my research, I learned that people with IBD were often not breastfed as infants and that breastfed babies develop healthy bacteria in their digestive tract. Those healthy bacteria can be beneficial in helping the body’s immune system fend off many different diseases. It’s my hope that breastfeeding will help create a healthy gut and microbiome for my daughter.

IMG_6936When it comes to breastfeeding as IBD moms, whether a child is going to latch or if our milk supply is going to be sufficient, tends to be the least of our worries. Our chronic health condition, plus the medications so many of us are dependent on to treat them—adds another layer of stress. In the end, you need to do what you feel comfortable with, what works for your body and for your family. Always know you are not alone in your struggles. Celebrate the parenting wins and accomplishments along the way—no matter how big or small. Lean on your support system—especially fellow breastfeeding mamas who can answer your questions and calm your fears. I can’t tell you how long I’ll continue my breastfeeding journey. For now—all I can do is take it one day at a time. What I can tell you—is how rewarding it is to see what my body is capable of, despite my disease and how amazing it feels to know I’m nourishing my little girl and providing her with a healthy start.

Helpful Resources:

IBD Parenthood Project: A one-stop-shop for everything you need to know leading up to conceiving, pregnancy and motherhood.

Crohn’s and Colitis Foundation

Online Communities for Chronic Illness Moms:

IBD Moms—Website coming soon! Social media channels: Twitter: @IBDMoms, Facebook: @IBDMoms, Instagram: @IBDMoms

Mama’s Facing Forward—Social Media Channels: Twitter: @MamasForward, Facebook: @mamasfacingforward, Instagram: @mamasforward

 

 

 

 

 

 

Band of IBD brothers: The power of paying it forward

Through the years, I’ve come to notice that much of the IBD advocacy space is female dominated, even though according to the Crohn’s and Colitis Foundation, men and women are equally likely to be affected. While there are some vocal and passionate men who share their patient journey, I’ve always felt there’s a need for more.

justin 3I recently connected with Justin Birnbaum. He’s a 26-year-old grad student at Northwestern University who was diagnosed with ulcerative colitis in 2015. He underwent a Colectomy in 2016 and six surgeries later, still has an ileostomy. Justin is studying journalism. As part of a school project, he profiled fellow IBD warrior, Robby Denien. Robby has served as a mentor to Justin and helped him take on his disease. This week—a guest post by Justin—about the benefits of their brotherhood, and how their bond has inspired him to give back to those in our community.

On occasion, I remember picturing what Robby Denien looked like.

Despite being in contact for almost three years, we had never met in person — communicating primarily by email and text message. I connected with Robby through a friend from college. She had come to visit me in the hospital and mentioned that her cousin was going through the same thing, a few months further along.

This past summer, being that we were both located in Chicago, we arranged to finally meet. I wanted to share Robby’s story, partly because of how remarkable it was and partly because it mirrored the very same struggles with ulcerative colitis that plagued my life.

After that meeting, there was one observation that stuck with me above all else — he looked healthy. J-Pouch surgery does not work out for everyone. It has a high success rate, but people are still condemned to live with alternative solutions such as a permanent ileostomy.

As someone who already dealt with failed surgeries and remains skeptical about finding a resolution to all of this, it meant a lot to see Robby thriving. He represented what my future could be like.

Leaning on others for support

justin 1When I was diagnosed, my mother and I were terrified. We jumped at the opportunity to speak to someone who knew the ropes and could safely tell us there was light at the end of the tunnel.

And that’s how it all began. Days before my third, and what should have been my final surgery, I sat down with my mother and composed a crisp 250-word email. Twelve hours later, Robby responded.

Robby lives a full life, working full-time as a music teacher. He had no obligation to answer that quickly or respond whatsoever. But he understood what I was going through. In my first email, Robby could see how paralyzed I was with fear of the days to come. He willingly opted to be a mentor to me. Why? Because someone had chosen to do the same for him during his tough times.

“When you meet somebody or have a friend who has ulcerative colitis or Crohn’s, there’s almost like a tight brotherhood of sorts,” Robby said.

Life after surgery with IBD

Having surgery is a tough experience to bear. In the case of IBD patients, one of the biggest concerns can be wondering what life will be like after going through all of this. In the first week of our correspondence, I sent him a long list of questions and he responded with a 2,000-word email. His words and his experiences helped calm my fears.

It was more than I could have asked for – a person, with IBD, to bounce any question or idea off of. Someone who was willing to tolerate my craziness and help me come to terms with what would be my new normal.

Paying it forward as a mentor

It also taught me a valuable lesson. When dealing with a life-altering condition like IBD, the best thing you could do for those around you is to share your knowledge and to pay it forward. Ever since Robby became a mentor of sorts to me, I have resolved to do the same for anyone who will allow me. And by doing so, I’ve made some great friends.

It’s always nice to have others to commiserate with when IBD is giving you a tough time. It’s even better when that person knows exactly what you’re experiencing. IBD can have such denigrating effects on your life that it’s easy to ball up and shut out the outside world, but that’s the not the right way to go about it.

We have to stick together. We have to continue to fight. And most of all, we have to keep our heads held high even when this disease brings us down to our darkest of days. That’s what this brotherhood is all about.