The IBD Parenthood Project: A Guiding Light for Family Planning

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.

When I was diagnosed with Crohn’s disease at age 21, finding out I had a chronic illness put my hopes and dreams on hold. I could barely think of the next day, let alone daydream about the future and the family I would one day hope to have. As the years went on, having a family was on my radar. I knew I wanted children, but wasn’t sure if my body already riddled with a chronic illness would be able to make that possible.IMG_6037

I had so many questions, so many worries. I wasn’t sure where to turn for accurate information. Advice from doctors tended to be conflicting. The internet was/is, well…the internet. I yearned for truthful, evidence-based information that would comfort me and guide me as I started my journey to motherhood.

The IBD Parenthood Project is just that. Rather than feeling like you’re wearing a blindfold and hoping for the best, moms-to-be in the IBD community can now feel at ease by having resources and a patient toolkit that answers all of those questions, and serves as a roadmap for family planning—from preconception to taking your baby home from the hospital and postnatal care.

IMG_6370One of the most helpful pieces of the toolkit is the FAQ, related to IBD and pregnancy. If I had this information readily available and at my fingertips prior to my previous pregnancies, I would have known about the importance of seeking care from a maternal-fetal-medicine (MFM) subspecialist at the start of my pregnancy. While I saw a high-risk OB, a “regular” OB and my gastroenterologist throughout my pregnancies, I wasn’t aware of what an MFM subspecialist was, or their role throughout pregnancy. After checking out the IBD Parenthood Project website, I found out there was an MFM subspecialist in my doctor’s practice, but I was never under his care. Moving forward, if I were to get pregnant again, I would want my care team to include him

The information in the FAQ about breastfeeding and medications is also extremely helpful. I felt a bit in the dark when I was pregnant with my son in 2016. I was nervous about breastfeeding while on a biologic. In the past two years, I’ve learned more and been able to educate myself on the benefits and the precautions associated with it. Now, my second child has been exclusively breastfed the first eight weeks of her life, despite my biologic injection, and I’ve been able to see how the benefits of breastfeeding far outweigh the risks for me and my family. It is resources like the IBD Parenthood Project that have helped guide my decisions. 09-untitled-9103

A common question I am often asked is “how likely it is for my son and daughter to have IBD in the future?” It’s a thought I hate to think about, but it’s always in the back of my mind. According to the IBD Parenthood Project and its Clinical Care Pathway recommendations, “up to 3% of children with one parent who has IBD will develop the disease (this means about 97% will not get IBD). If both parents have IBD, a child’s risk may be as high as 30 percent.” To me—since my husband does not have IBD, these odds are SO reassuring. While there’s a chance it can happen, it’s a reminder that IBD patients should not hold off on having a family out of fear of passing along the disease.

As a patient advocate and IBD mom, I hear from women around the world with questions relating to pregnancy, motherhood and life with Crohn’s.

The IBD Parenthood Project provides so many helpful tools. Whether it’s the IBD Checklist of Questions to ask your care team, the Myths vs. Facts Fact Sheet, or the After You Deliver Fact Sheet, The IBD Parenthood Project covers it all. From now on, women with IBD never need to feel alone as they take on their most important role of all—being a mom.

For more information, you can access more helpful resources by visiting: https://goo.gl/UY5r5r.

Silencing the Stigma: How one man is using his patient journey to empower others

This week—a guest post by IBD patient advocate Ziyad, from The Grumbling Gut. IMG_20181104_220957_401Ziyad shares how his experience taking on Crohn’s inspired his decision to become a radiographer and show fellow patients they are much more than just a number. I’ll let him take it away…

“Don’t let fear keep you quiet. You have a voice so use it. Speak up. Raise your hands. Shout your answers. Make yourself heard. Whatever it takes, just find your voice, and when you do, fill the damn silence.”

Those words were spoken in an episode of Grey’s Anatomy by Meredith Grey and I couldn’t have put it better myself. I was officially diagnosed with Crohn’s disease in 2007 having spent the previous year experiencing symptoms and not knowing what was going on. My absences from school – and to some extent my social life – didn’t go unnoticed and when asked where I was or if I had to cancel last minute, I’d just give my standard air tight excuse of “something came up last minute”.

Truth be told, I wasn’t ready to tell anyone outside of my family about my diagnosis, so I did the only thing I could – kept it a secret. IMG_20181122_171801_972I was afraid of what people might say, what they might think of me or if they might start treating me differently – I didn’t want to be anything other than the supposedly ‘healthy’ 17-year-old with a ‘normal’ life. As a result, I spent twelve years living with Crohn’s in silence. I was embarrassed, because let’s face it, talking about your bowel habits isn’t the most glamorous topic.

If we fast forward to now and having gone from being so secretive about my IBD to talking about it so openly and sharing my experiences through social media – you may ask “what’s changed?”.

The answer is simple – I’m not afraid anymore. I refuse to let fear keep me quiet.

Using my voice to beat the stigma

It took me a long time to realize that not only do I have voice, but I could use this voice and speak up to beat the stigma that held me back from sharing my story for so long. I also believe there’s no point of speaking up if my actions don’t match what I’m trying to achieve, which is why I started to volunteer for Crohn’s & Colitis UK, the charity giving a voice to people with Crohn’s or Colitis. IMG_20181129_204053_117

Anyone that has IBD knows the impact it can have on your daily life, but my IBD helped shape my career. Having spent a fair share of my time in hospitals being a patient, I got used to the hospital environment and now work as a diagnostic radiographer. My IBD exposed me to the radiography profession early on, having all my x-rays and MRI scans done to diagnose and monitor my disease. Shortly after being diagnosed and referred to a specialist I started the pleasant journey of getting treatment for my Crohn’s.

As everyone and their IBD is different, some medications may work for some and won’t for others so at the time there was a lot of trial and error and it felt like ‘let’s throw what we got at the wall and see what sticks’. Some of these treatments would make me feel even sicker due to the side effects and it really did feel like I was being treated as a list of symptoms and not as a person. Long story short, I changed specialists three times before finding one who treated me like a person.

How being a patient helped guide my career

Having experienced life with Crohn’s first hand has given me incredible insight as to how to provide better care for all the patients that I encounter on a day to day basis. I try to give my patients the opportunity to speak up, use their voice and be heard because of what I went through in the early stages of my IBD diagnosis. It can get busy in hospitals, especially with the increasing patient load and shortage of staff. IMG_20190210_202149_996It can be easy to fall into the ‘conveyor belt’ motion of one in, one out, to try and manage the workload. But it is in these busy moments, where taking a few extra seconds to ask a patient who looks upset, scared or frustrated if they’re OK, that can make all the difference.

It humanizes the experience for patients and gives them a chance to express themselves. I’ve learned it’s the little things that have the greatest impact in patient care.

My advice to anyone reading this—No matter how tough things get, always find the strength to speak up, because keeping all your pain and worry inside won’t do any good. The more you share your story, the more likely you will inspire someone else to share theirs.

Follow Ziyad on Instagram: @thegrumblinggut, Twitter: @thegrumblinggut, and Facebook: The Grumbling Gut.

 

 

 

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.

 

 

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.

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.

 

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.