Tag: Mamas Facing Forward

Inaugural Autoimmune Summit just what the patient ordered

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This post is sponsored by the Autoimmune Association. All thoughts and opinions shared are my own.

An educated patient is an empowered patient. Over the weekend the Autoimmune Association presented its Inaugural Autoimmune Summit that aimed to do just that. The virtual two-day event featured 23 educational sessions and more than 50 autoimmune experts including physicians, nurses, policy experts, and of course, patient advocates.

The Summit covered a wide variety of important topics that impact patients and caregivers who live with autoimmune conditions. I had the opportunity to moderate a panel discussion about fertility, family planning, and pregnancy alongside Dr. Marla Dubinsky, Chief of Pediatric Gastroenterology at Mount Sinai and Co-Director of the Susan and Leonard Feinstein Inflammatory Bowel Disease Clinical Center and Mariah Leach, a mom of three who lives with Rheumatoid Arthritis and Founder of Mamas Facing Forward. As an IBD mom of three chidren myself, I’m extremely passionate about sharing guidance and support for fellow women on this subject.

During the discussion, Dr. Dubinsky touched on many aspects of the journey to motherhood and beyond with IBD, but one comment she made resonated with me. She said the greatest gift a woman can give their child, is to stay on their medication, and allow their baby to thrive in an uninflamed environment. As someone who needed and depended on my biologic with all three of my pregnancies that comforted me greatly and really struck a chord.

Other topics of discussion during the Summit included tips and tricks for managing multiple specialists to clinical trials, health equity, advocating on Capitol Hill, and complementary medicine.

A dream come true

Lilly Stairs, Vice Chair of the Board of the Autoimmune Association and Summit Lead, lives with Crohn’s disease and arthritis. As a patient advocate, she understands the vital importance of providing those who live with chronic health conditions to share their voice and articulate their needs and struggles.

“It has been a dream of mine and the Autoimmune Association’s to plan an event that unites community members from across autoimmune conditions. Our patient odysseys share deeply rooted similarities. By coming together, we can accelerate autoimmune education, awareness, advocacy, treatment, and someday, cures.”

Goals of the Summit

The goals for the Summit were three-fold. Organizers and presenters like myself hope you walked away feeling connected to people across the patient community, while learning tangible tips for managing your autoimmune conditions. Lastly, the hope is that attendees and Summit participants feel energized and excited about what the bright future holds for those living with autoimmune diseases.

Lilly went on to say, “Events like the Autoimmune Summit are essential engagements for patients and caregivers to participate in. These events provide tools to navigate life with chronic illness and empower patients with the knowledge they need to be “CEO, secretary, and treasurer of your care” as Hetlena Johnson, Lupus Patient Advocate so eloquently stated in the Managing Multiple Autoimmune Conditions panel.”

Events like this are a reminder that we are not alone in our journeys. Even though chronic illness can be extremely isolating, events like the Autoimmune Summit offer the opportunity for connection that often feels like much needed chicken soup for the soul. The camaraderie that is possible even though Zoom has a lasting impact on helping to lift the burden and self-doubt many patients face.

From the Speakers

Tina Aswani Omprakesh participated in a panel on complementary medicine and autoimmunity. As an ostomate who juggles Crohn’s disease, Gastroparesis, and IBS, she knows firsthand how imperative it is to take on illness with multiple approaches.

“This is an important subject that’s often not discussed in the autoimmune space. The reality is that many patients are thinking about exploring it but don’t know how to navigate it in a way that can help complement their existing therapies. These conversations are essential to proliferate both credible information and sources of complementary therapies so patients can truly live their best lives possible.”

Molly Schreiber lives with Type 1 Diabetes, Rheumatoid Arthritis, and POTS. During the Summit, she spoke about what it’s like to manage multiple autoimmune conditions.

“Anytime I can share my story, my hope is that attendees feel less alone in their battle with chronic illness. We may have different health conditions, but our fight is often the same—pain management, medical providers who listen, and affordable medications we can easily obtain.”

Alisha Bridges is a patient advocate who lives with Psoriasis. She participated in a breakout session geared towards dermatology. She says having the chance to speak at the Autoimmune Summit was an honor.

“I hope my story helped viewers to better understand the unique challenges of living with psoriasis as a woman of color especially in the clinical trials sphere. These conversations are imperative to elicit change for better care of patients of all backgrounds.”

Curtain Call

It’s our hope attendees discovered tips for managing autoimmune disease from patient advocates like myself who understand your reality, while also learning about the latest research and future treatments on the horizon.

Did you miss tuning into the first-ever Autoimmune Summit? No worries! All the presentations were recorded and will be shared in the weeks ahead. I’ll be sure to share the Fertility, Family Planning, and Pregnancy discussion I was a part of on my social media channels as soon as the video becomes available.

Thank you to all who tuned in, to all who participated, to the organizers, like Lilly, and the generous sponsors who made this happen. It’s amazing to see what’s possible when patients have a proverbial seat at the table alongside medical professionals and digital health companies. Our voices matter and time and time again we’re being heard loud and clear.

Follow the Autoimmune Association on social media

Instagram: @autoimmune_diseases

Twitter: @AutoimmuneAssoc

Facebook: Autoimmune Association

He made me an IBD mom four years ago…here’s what I’ve learned

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Four years ago, today, I became a mom. Our son Reid Robert was born and placed into my arms for the very first time. Like any parent, especially one with a chronic illness, those initial moments were emotional and overwhelming in the best way. A wave of relief rushed over me as I lied on the table after my scheduled c-section, grateful my body that had fought Crohn’s disease since 2005, had brought a perfectly healthy baby boy into this world. But I was also nervous about my abilities as an IBD mom and what the journey of parenthood would look like as I juggled taking care of myself and this tiny little human. How would my life with a chronic illness and as a mom play out?

Fast forward four years. I am now a mom of two, with a baby boy on the way (24 weeks tomorrow)! Over these last 1,460 days, I’ve learned and grown a great deal both personally and as an IBD patient. Today—I share that perspective and knowledge with you. Perspective and knowledge, I wish I had when I first became a mom and what I’m continuing to learn along the way.

  1. Fed is best. There is so much pressure on how women choose to feed their babies. It’s ridiculous. I breastfed Reid the first three days and he had formula from that point forward because I was nervous about my biologic. The second time around, I did more research, and chose to breastfeed my daughter. Our journey lasted for six months (my milk supply ran out once I got my period). I supplemented with formula. I’m hoping to nurse our final baby when he’s born in July. That being said—no matter what you choose, it’s your choice. Your baby will thrive. Don’t beat yourself up over it. Drown out the judgement and speak up if someone questions your decision for you and your baby. For me, breastfeeding is a labor of love. I’m not going to act like I enjoy it, because it was hard for me. It’s not something that comes natural for all, and that’s ok. No one is going to ask my kids when they are in elementary school or high school how they were fed or know the difference.
  2. What they see, doesn’t always hurt them. When you’re cowering on the toilet in pain and they’re watching with eyes that speak of concern. When you’re sitting on your couch about to do your injection. When you’re struggling to stand up straight because your abdominal pain is too much. Don’t shield them from your pain. That pain is part of your family story and it’s important you are honest and upfront. It’s those moments that shape their little hearts and their everchanging minds.
  3. Kids roll with the punches. Have to cancel plans or have a low-key day inside watching a movie instead of going for a walk or to the park? —that’s ok. Your children will feel loved and taken care of just the same. Kids are flexible. They don’t need to stick to a rigid schedule to be happy and fulfilled. At the end of the day, it’s your love and support that matters most.
  4. Innate empathy from a young age. With my oldest being four, I can’t tell you enough how many times I’ve been blown away by his empathetic heart. Before he was even two years old, he would kiss my thigh after my injection and walk up to me in the bathroom, give me a hug, and pat my arm or stomach to comfort me. Now, he asks me if I’m hurting or in pain. He knows mommy isn’t always healthy, but that she’s always strong and gets through it. That empathy goes far beyond me—I see it in the way he is with others and it makes my heart feel like it’s going to burst with pride. I credit that aspect of his personality to what he’s witnessed these first few years of life, and for that I’m grateful. I can guarantee you’ll see the same with your children.
  5. Greatest source of motivation. Even though I’ve been in remission since August 2015, my kids still serve as my greatest motivation on the difficult days with the disease. Whether it’s pain, prepping for a scope, or going through a procedure, I keep my eyes on the prize—them. Just thinking of them gets me through everything. They give me so much to fight for, day in and day out. It’s not just about me—it’s about all of us.
  6. The importance of communication. When you become a parent, communication becomes even more paramount in your relationship. If you don’t share when you’re struggling or symptomatic, your partner can’t offer the support you need. Even if you’re not in a full-blown flare, it’s beneficial for everyone involved (you, your partner, and your kid(s)) that you share when your IBD is causing you issues. I always text my husband when he’s at work or simply say, “I’m having a bad Crohn’s day” or if I’m in the bathroom for a long time after dinner while he’s trying to get the kids to bed …and that’s all it takes to get the message across.
  7. Asking for help doesn’t make you weak. You’ve probably heard the saying “it takes a village to raise a child” …and it really does. You are not failing or less than because you ask or help, need a break, or time for yourself. You will be a better mom if you take time for you. You’ll be better able to keep your disease in check if you have time to relax and de-stress. I’m not always the best when it comes to accepting or asking for help, but as I gear up for three babies four and under, I know I’m not going to be able to do it all on my own and that I’m going to need more out of my village.
  8. Your health can’t go on the backburner. When you’re a mom, your needs often go to the bottom of the totem pole. When you are an IBD mom, they can’t. While I used to try and “brave out” my symptoms until the last possible moment, as a mom, I’ve completely changed. After nearly 16 years living with Crohn’s, I know when my body is speaking to me and now, I listen and address what’s going on immediately. I credit being proactive and sharing with my GI when it feels like my remission may be in question for the reason why I’ve been able to stay in remission all this time. I’ve gone on bursts of steroids, had my trough levels checked for my biologic, and done fecal calprotectin tests through the years when needed. The last thing you want as a parent is to be hospitalized because of your IBD. To me—it’s inevitable. It’s not a matter of if it will happen, but when. But I do everything in my power to keep myself home and out of the hospital and will continue to do so until that’s no longer possible.
  9. Every “tummy ache” and loose stool from your child is not IBD. When my kids say they have a tummy ache or I seem to think they’re going to the bathroom more often one day than not, I’m immediately worried and concerned. Could it be IBD? Why are they feeling this way? Is it my fault? What do I need to watch out for? All the questions flood my mind and sometimes my emotions get the best of me. Then, my husband normally talks me down and says it’s probably nothing and I need to stop jumping to conclusions. He’s right. Chances are potty training could be causing tummy aches. Or maybe like the rest of the population, they are going more because of something they ate. The chance of passing along IBD to your child (when one parent has it) is only 2-9% (according to the Crohn’s and Colitis Foundation). Remember that.
  10. You are their hero. Of course, there are times I wish I wasn’t an IBD mom…and “just” a mom. At the same time, I credit my disease for much of my outlook on life and how it helps me cope with setbacks, but also celebrate what to many others may be the mundane. My kids don’t see me than less than. When they sit through doctor appointments in the stroller and blood draws, or watch me make faces drinking colonoscopy prep, or count to 10 while doing my shot before they go to bed, they simply see their mama. This is their normal—they don’t know anything different. When I talk to teenagers or young adults who grew up with a parent who has IBD, I always hear the same thing— ‘they are my hero’.

Along with being a hero to your little one(s)…you are also…

Someone who takes unpleasant moments in stride.

Someone who wears the title of “mama” with great pride.

Someone who will never stop fighting for the feel-good days.

Someone who doesn’t allow your illness to rob you or your child of joy.

Someone who goes after their dreams—like that of being a mom—even though your back story may be a bit more complicated.

Someone who is just as worthy as anyone to be a parent.

We’re four years in, Reid. Like everything in life, each moment—beautiful and challenging—is fleeting. Thank you for being patient with me, for understanding me, and for being a daily reminder that I’m so much more than my Crohn’s disease. Being your mom is my greatest title and has been the best chapter of my life story and patient journey thus far.

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

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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