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.

IBD Parenthood Project: How a new initiative brings hope and clarity to IBD moms

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.

Whether you consider yourself to be healthy or if you battle a chronic illness, the thought of pregnancy and motherhood can be overwhelming. So many unknowns. So many what ifs. _f6b0473As a mom of two, who has battled Crohn’s disease for more than 13 years, I can relate to the concerns and the anxiety about what the future holds, what our bodies are capable of and how our disease will respond as we bring new life into this world.

My son turns two in March and my daughter was just born January 14. To say it’s been a busy couple of years is an understatement! That being said, family planning, pregnancy and postpartum care are all experiences that I’ve dealt with recently as a woman with inflammatory bowel disease (IBD). When you live with Crohn’s or ulcerative colitis, there’s no telling what the next hour or the next day will bring. You’re oftentimes on medications and navigating disease symptoms and flares. You wonder if your body can take on the role of creating a new life, when it has continually failed you and caused flare-ups of disease activity. You worry about the likelihood of passing on your disease to your children. There’s a laundry list of questions and thoughts that run through your mind. ibd-parenthoodproject-logo-01

My experience is much like any woman who battles a chronic illness. So much gray area, not enough concrete research or answers. This is what inspired the launch of the IBD Parenthood Project. The new website aims to provide IBD patients with medical facts about IBD and pregnancy. You can think of it as a one-stop-shop for all your questions and a reliable resource to address your uncertainties and validate your decisions. The IBD Parenthood Project aims to address misconceptions that so many of us universally have when it comes to medications, working with a healthcare team, delivery, breastfeeding and postpartum care.

18-untitled-9170.jpgThis resource gives mothers like me and you peace of mind and empowers us to make decisions about our bodies and for our families, in the safest way possible. The information arms us with the knowledge to not only allow us to be our own best advocates, but also comfort us as we build our families and take on the role of mom.

During my first pregnancy, I was very hesitant to breastfeed my son because of the biologic I was on. I worried about the lack of long-term studies available and if a postpartum flare would impact my ability to nourish him. I wasn’t sure where to turn to for sound, credible advice. I turned to Google and stumbled upon conflicting information and varying opinions shared on online support group forums. Making this decision was difficult, img_1346and the information out there led me to feel a bit uneasy. I chose to formula feed my son because of the lack of research and consistent information that I was able to find.

Now, less than two years later, my thoughts on breastfeeding while on a biologic have evolved. I’ve been able to educate myself thanks to resources like the IBD Parenthood Project that have given me medically-based facts on the benefits of breastfeeding my little girl. With Crohn’s, you often feel like you’re riding in the car, but not in the driver’s seat. This new website and toolkit makes you feel like you’re the one behind the wheel. It provides a newfound confidence that so many of us lack.

The  “Pregnancy & IBD: After You Deliver” fact sheet addresses all the big questions that arise once your baby is here. The information covers everything you need to know for yourself and for your child. As we know, the postpartum period, or the “fourth trimester,” is complicated, regardless of your health. Throw in IBD and it makes for what can be an even more complicated transition. Having this resource at our disposal saves us from doing the homework and helps guide us as we take on the unknown and acclimate to our new life.

Motherhood has inspired me greatly in my battle against IBD. It’s shown me that despite my body repeatedly challenging me, I was still able to bring life into this world. Family planning and having children is a personal decision. But, if it’s something you dream of and something you hope for in your life, please take the time to educate and equip yourself with the knowledge that is now readily available, right at your fingertips. Remember, with proper planning and care, women with IBD can and do have healthy pregnancies and healthy babies.

 

How motherhood has helped me discover I’m so much more than my IBD

We walked out of the automatic rotating doors of the hospital and the cold air hit my face. I looked up to the sky in thanks, to show my gratitude and to take in the moment. We had our baby girl in tow, our Sophia Shea. img_5915It was a brisk January morning. Tears filled my eyes as I was overcome with emotion. Our rainbow baby is here, safe and sound. Another pregnancy behind me, a pregnancy that silenced my Crohn’s disease and provided sweet reprieve from my chronic illness. It was time to take Sophia home and start our life as a family of four.

When your health is taken from you and when you receive a diagnosis of inflammatory bowel disease, life prior to illness often feels like a distant memory. There’s something so sacred and so special about bringing a healthy life into this world, despite your own shortcomings.

My Sophia, much like my sweet son Reid, are my inspiration and motivation to push through the difficult days and find strength and perspective within myself. The creation of their lives has renewed my faith in my own body. img_5886Each time I have a procedure or deal with painful symptoms, I see their faces, I say their names in my head, and it brings me a sense of calm. My goal when Reid was born, was to stay out of the hospital until he could walk, luckily that’s been the case. He’ll be two in March. Now, I have that same goal following the arrival of my daughter.

Pregnancy and child birth bring about such an amazing, miraculous transformation. You see life created right before your eyes. You experience a shift in your own identity. There’s nothing like it. There are no words to capture the emotions and the overwhelming love you feel for your children.

Finding the balance: Motherhood and IBD

17-untitled-9166Motherhood and IBD can be a difficult and challenging balance. Some days the fatigue and symptoms are so debilitating you feel like you’re falling short. At the same time, the days where you’re feeling well, remind you that you are so much more than your disease. Just because you have a chronic illness, doesn’t mean you are robbed of experiencing the beauty of life and what it feels like to have your very own family.

Women often reach out to me with questions regarding fertility, conceiving, pregnancy and what it’s like to take on parenting while battling IBD. There are so many unknowns. I know it can be daunting. img_5751It all starts with recognizing where you are in your patient journey and then determining when your symptoms and body are in the best shape to get pregnant. While everyone’s disease experience is different—the worries, concerns and fears associated with parenting and chronic illness are often the same. Always know you are never alone. Communicating these feelings with those around you, makes all the difference. Lean on our patient community and all those who’ve lived your reality.

I treated my pregnancies the same. I had colonoscopies prior to trying, to ensure I did not have active disease. Once I received that green light, I discussed my game plan with my OB, high risk OB and my GI and had monthly and sometimes weekly appointments. Each time—I stayed on my medication and vitamins from start to finish, which includes the biologic drug, Humira. I had scheduled c-sections for both. It’s all about finding what works for you, what brings you comfort as you embark on this journey and being confident in your decisions. It’s your body. It’s your baby.

29-untitled-9292When Sophia Shea entered the world January 14, 2019, our family received a wonderful gift. Between our son Reid and our baby girl, we could not be more blessed. My chronic illness has given me such an appreciation for health and for life in general. With the pregnancies behind me, I often reflect on where I started back at age 21 in 2005. At that time, in my eyes, I was Natalie and I had Crohn’s disease. There was no telling what my future would hold. Now, nearly 14 years later, at age 35, I’m so much more. I’m a mom to two under two. I’m a wife. I’m a daughter. I’m a sister. I’m an aunt. I’m a friend. And I also have Crohn’s.

 

SOCKIT2IBD: How you can help this family knock out IBD

Since the day Brian Strasser met his wife, Mona, she’s been battling Crohn’s disease. They met in college more than 30 years ago. During that time, Mona underwent an appendectomy, through that procedure, natalie - family picit was discovered she had Crohn’s disease and a portion of her intestine was removed. IBD has been a big part of their lives, their relationship and their family—but, it hasn’t stopped them from enjoying life, finding humor amidst the difficult days and having children.

Speaking of family, their son Aidan (now 21), was diagnosed with Crohn’s at age 13. Much like his mom, he tends to put on a brave face during flares and takes his symptoms and his disease one day at a time.

“Having empathy is a must. My wife and Aidan are true warriors and that is what really inspires and motivates me to want to help spread awareness,” said Brian.

Brian and his family go above and beyond to help get the word out about IBD. In prior years, they launched “Crunches for Crohn’s and Colitis”—crunches for crohn's pose - suburbana campaign both in real life and on social media to connect to those with IBD, create awareness and raise money for the cause. Crohn’s and Colitis Canada backed this effort and supported the effort on a national level. Here’s how it worked—Brian shared a challenge that he would do 10,000 crunches until $10,000 was donated to Crohn’s and Colitis Canada. For five months straight, Brian posted a video of himself doing crunches, while wearing costumes.

“There were several days where I was not 100 percent inspired to post or had time to post, but I made a commitment and even if the video went up at 11:59 pm that day, I did it. In the end, we raised almost $15,000 for the cause and was put directly towards research. I know it’s only a drop in the bucket compared to what is raised annually, but it was my part to make a difference to some degree,” said Brian.

Now—Brian and his family have launched a new video campaign called “SOCKIT2IBD”. The goal is similar—to raise awareness about IBD through videos on social media. You can think of it like the ALS Ice Bucket challenge, but with a twist.

You may be wondering how you can SOCKIT2IBD? It’s simple:

  • Grab a pair of socks
  • Put them on your hands
  • Get in a boxing stance and on video say “Jab, Jab, Hook, Uppercut…Sock It to IBD!”
  • Share a short explanation of why you’re passionate about the cause and implore friends and family to donate to the cause.
  • Donations can be made by clicking this link.
  • Include the hashtag: #SOCKIT2IBD in your social media post and tell others to do the same.
  • When you post to social media, tag Brian Strasser on Facebook, @strassarama on Instagram and @10kCrunches for Twitter.natalie - sockit pose - brian

As Brian says, even though we live in different countries, we’re both fighting the same end goal—a cure for Crohn’s and ulcerative colitis.

Click here to check out the SOCKIT2IBD YouTube channel.

 

 

Bigger Than Basketball: Taking IBD support to new heights

Loyola University of Chicago Men’s basketball team had a fairytale season last year. There were countless headlines about the Ramblers being THE Cinderella team during March Madness. natalie hayden 5At the time, Nick DiNardi was a senior walk on and served as a scout to prepare players for each game. Aside from his skills on the hardwood, Nick has battled Crohn’s colitis since he was 11.

The diagnosis came at a time when he was enjoying sports and just being a kid. While playing football, he lost around 25 pounds rather abruptly. Along with weight loss, Nick started feeling extremely fatigued, had intense stomach pains, bloody stool and vomiting. About a year after these symptoms persisted and following several tests and scans, Nick received his IBD diagnosis.

“When I was told I had Crohn’s disease, I was not really sure what to think. I had never heard of it and as an 11-year-old, I really turned to my parents to tell me how to handle it. I tried to continue living my active lifestyle, although many times it was very hard. I felt lonely especially because I felt like I was the only person in the world who had this disease. nick and mom, nick sickMy grade school friends had no idea why I was crying in class, oftentimes teasing me while I was in pain,” said Nick. “My parents and siblings were always there to do everything they could to make me feel better, but I just never felt like anyone related to the pain I was in.”

In the 11 years since Nick received his IBD diagnosis, it took him nine years to encounter another person with the disease. He felt isolated and alone in his journey. These feelings inspired him to create a 501 (c)(3) nonprofit called Bigger Than Basketball (BTB) in August 2018.

“The mission of BTB is to raise awareness and funding for research to benefit individuals suffering from Crohn’s Disease and ulcerative colitis. BTB encourages, educates, and mentors individuals affected by these diseases to achieve their goals while managing their illness,” said Nick.natalie hayden 2

One of Nick’s main missions is to make those who are diagnosed with IBD have a solid support system. He hopes BTB will serve as a resource of comfort, a safe space for those in the IBD community to share their stories in order to help others directly or indirectly affected by these diseases. His goal is to create a network of support that allows those of us with IBD to take off our mask and be real about your struggles.

“IBD is a beast of a disease. You can have great days where you feel active and energetic, but you can also have days where you don’t feel like talking or even getting out of bed. With the creation of our network, we want to allow people to express what type of day they are having, so others may be able to relate with their current situation,” explained Nick.

“Bigger Than Basketball is truly an exciting new organization, as one of its key goals is to raise awareness in young persons diagnosed with Crohn’s Disease or ulcerative colitis and show they are not alone,  there are others just like them who understand and are experiencing what they are feeling, and that they can still achieve their dreams with the proper understanding and education about their condition,” said Dr. Russell Cohen, MD, FACG, AGAF.

As a member of the Board of Directors and Director of the Inflammatory Bowel Disease Center at the University of Chicago Medicine, Dr. Cohen believes BTB is truly a unique way to reach young people who need help, while expanding awareness and funding with the aim to conquer these conditions in our lifetime.

It’s Nick’s hope that BTB’s network will serve as a buddy system and provide a safety net for people to fall back on. Along with joining the BTB network, you can volunteer and attend upcoming events or donate to the cause. Nick is also looking for people to join the associate board, preferably those living with IBD. To learn more, email: info@biggerthanbasketball.org. natalie hayden 4

Nick’s IBD has also inspired him to work in the field of medicine, specifically research. He currently works at the University of Chicago with a focus on IBD and Celiac research.

Be sure to show some love to Bigger Than Basketball on social media:

Twitter: BTB_Foundation

Instagram: btb_foundation

Facebook: Bigger Than BasketballFoundation

My top 5 wishes for those with IBD

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

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

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.