Why I cried talking about Crohn’s at my friend’s rehearsal dinner

I stood before a room of strangers last week and shared some sentiments about my friend Jenna who was marrying the love of her life the next morning. Chances are—you’ve been at a rehearsal dinner and participated in the ‘open mic’ opportunities.

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Jenna’s birthday, 2009

As a former TV newsie, I always enjoy a chance to speak and articulate my feelings! I started out talking about how we knew one another and the type of friend she was—and then I went for it. I broke out the “C” card…the “Crohn’s” talk. Most of the people in the room were strangers to me until that night, some probably had no idea what Crohn’s was.

In that moment, I tearfully thanked my friend of more than 12 years in front of a roomful of people for always being present, always genuinely caring and for always being there not only in life’s amazing moments—but also through every flare up I’ve experienced along the way. When you are diagnosed with a chronic illness, you don’t stop and think twice about which friends are going to be there, you just expect it. Unfortunately, you’ll find many ‘friends’ tend to fade to the background and will continue to do so throughout your patient journey.IMG-0841

This friend—is the opposite. This friend has sent me countless snail mail letters on adorable stationary—some with Ryan Gosling’s face plastered all over it, others with an inspirational girl gang type quote. Each time I’ve been hospitalized, she’s been my constant ray of sunshine. Always texting. Always calling. Always checking in on me. Her efforts seem effortless. And that my friends, is priceless. Rather than feeling guilt for being “that friend” she makes me feel empowered and loved.

When you live with IBD (or any chronic illness for that matter)—seek out your Jenna(s). IMG-0838Find the people who lift you up. Trust in the bonds you create with those who are there for you because they want to be out of the goodness in their heart, not as an obligation. Hold on closely to the relationships that spark joy and don’t extinguish your flame. Lean on those who are willing to give you their hand to lift you up, even when you don’t ask for it.

At Jenna’s rehearsal dinner, I wanted her to know. I wanted her to know how her compassion and empathy meant the world to me. I wanted her to know how much I appreciate all the effort she continually puts into our friendship, despite living out of state from one another for the past decade. I wanted her friends and family members, and her now husband to see the impact she’s made on my life and how her efforts to be there, make her who she is.

My hope for the IBD family is friendships like this. The ones that stand the test of time. The ones that ground you. The ones that show you the beauty of another’s heart. The ones that remind you that you aren’t ever going into battle alone. The ones that serve as your light when the days are dark. They exist. They are possible. You just need to find them.

Wedding photo cred: Savannah Kay Photography

Writing for a reason: IBD Pen Pals

Who says snail mail is a thing of the past? For one 10-year-old in the Chicagoland area, connecting with fellow IBD pediatric patients is helping her cope, comfort and help others as she takes on Crohn’s disease herself. emily4Meet Emily. This past February she received her chronic illness diagnosis. Even though she’s brand new to IBD life, she’s taking all the pain and all the setbacks in stride.

Her mom, Michelle, says watching her young daughter go through Crohn’s has been a punch in the gut.

“It’s overwhelming, lonely, and mentally draining for everyone involved. Her little body has been put through so much in the last few months and she just goes along with it all. I wish I could’ve done all the horrible tests and take away every ounce of her pain. My heart breaks every time she gets poked, every time she takes medicine, every time she has to do a test, or when I send her to school, knowing she feels horrible.”

Emily’s courage and compassion for others has inspired Michelle. Her Crohn’s diagnosis has spurred an interest to connect with other IBD kids. Rather than take on the disease in silence, Emily finds there is strength in numbers, a purpose for her pain. Emily penpalHer mom was able to reach out to fellow parents on Facebook about a pen pal program.

“How cool to come home from school and have a couple letters waiting for you from kids all over the country?!? Emily has already made 12 new friends with IBD from the U.S. and the U.K. I never want Emily to feel alone on this journey nor do I want any other kids to feel alone. I want Emily to see that other kids who have IBD are living a “normal” life and that she can, too! There may be days when I won’t understand what she’s going through, but her new friends will.”

Emilyand michelleFrom a parenting perspective, the pen pal group has introduced Michelle to other mamas going through the same fears and experiences. The connections have brought her peace of mind as she navigates these new waters with her daughter.

“Emily and I are firm believers in spreading positivity and what you give out, you get back. It’s up to us to find the good in this situation and what better way than emilylettermaking new friends? Friends who understand and continually cheer you on, no matter how far they are. My hope is that Emily will make life long connections and that these letters will serve as a constant reminder that she is never alone.”

Interested in joining this pediatric pen pal group? A Facebook page is in the works. In the meantime, you can get involved by emailing Emily’s mom, Michelle: positivelyshelly@gmail.com.

Breastfeeding with IBD: 5 tips for getting started  

You can think of us as ‘bosom buddies’—IBD moms trying to navigate life with chronic illness as we take care of our families.  Both of us battle Crohn’s. Both of us are on Humira. Both of us are bloggers and passionate chronic illness advocates. For Gutsy Girl blogger, Stacy Ransom, one of her main missions was to breastfeed her son. As a mom who chose to formula feed my son and who is currently breastfeeding my 12-week-old daughter, trust me—I get the guilt, I get the struggles, I am completely of the mindset that ‘fed is best’. The same can be said for our guest blogger, Stacy. This week she shares her insight on breastfeeding with IBD and offers up five helpful tips for navigating nursing. image1 (11)

Breastfeeding is a touchy subject. I’ve purposefully avoided discussing my experience for fear of offending others, because it seems that regardless of the stance you take, someone always gets upset. I’d like to start with abundant clarity that above all, fed is best and there is zero shaming here for mothers, regardless of the path they choose.

I was diagnosed with Crohn’s Disease in 2015 and spent years doubting my body’s ability to do anything right. When I became pregnant with my son in 2017, I wanted to do everything possible to prevent future gut issues for him.

We don’t know the cause of Inflammatory Bowel Disease, but someimage2 (1) studies suggest it may start with a bacterial imbalance in the gut, and several studies have shown that people with IBD were less likely to have been breastfed as infants. Furthermore, a study in Denmark showed that breastfed babies developed certain types of healthy bacteria in their digestive tract, which non-breastfed babies were lacking. A healthy amount of beneficial gut bacteria can promote a healthy immune system which fends off different diseases.

When I became pregnant with my son, I opted to deliver via cesarean due to my IBD, but I knew this would shift his first gut community. I read all the studies and learned all the digestive benefits of breastfeeding, so I wanted to do everything I could to set us up for breastfeeding success. My Crohn’s specialist also said she had noticed a decrease in postpartum flares among her patients who breastfed. I was really committed to giving this my best effort.

image3 (2)It wasn’t easy, but I’m so glad I stuck with it. We lasted 16-months until he self-weaned and he has a very healthy immune system so far, despite the cesarean and me being on Humira. Best of all? I didn’t have a postpartum flare, which my doctor attributed to the combination of staying on my medications, following my diet plan and breastfeeding.

I know not everyone has a positive nursing experience, but I’ve received countless messages from new mothers with issues that can easily be either resolved or prevented entirely. If you’re an expectant mother with IBD and think you want to try breastfeeding, here are some of my best tips for getting started:

  • Gather your supplies early. I stocked our fridge with easy, healthy, nursing-friendly snacks. I also made “nursing stations” in key areas around the house including a water bottle, snacks and lanolin cream. I bought a few very loose, button-down shirts to allow for easy nursing access and air flow throughout the day. I also got a few soft nursing bras in a full cup size bigger than my normal size (depending on your “normal” you may opt for two cup sizes bigger), and machine-washable, cotton nursing pads. They stick less than the disposable ones and cause less irritation, in my experience.
  • Find a Lactation Consultant. I can’t stress this enough. No matter how many YouTube videos you watch, nothing can compare to a real expert standing with you and guiding you through. Most hospitals will provide at least one consult before you are discharged. If yours does not, contact your local La Leche Foundation for support. Don’t listen to people who tell you it will just “come naturally,” because you BOTH are learning and the right latch from the beginning makes a world of difference! Some pain is normal in the beginning, but if it’s unbearable or if you start to bleed, something is wrong, and you should have a professional adjust your latch or check your baby for a lip or tongue tie.
  • Start off strong. Allow your newborn to latch as much image4as possible, especially in the first 24 hours, and provide plenty of skin-to-skin. After a c-section, the last thing I wanted to do was constantly get in and out of bed to pick up a newborn. Instead, I just spent my days with my son nestled on my chest so we could both sleep, heal, bond and get my milk flowing.
  • Stay positive. Stress won’t help either one of you (and it certainly don’t help your IBD). Relax and take deep breaths as your infant latches. Your milk may take a few days to fully come in, and it may take several weeks to get in a good rhythm. If you feel your supply is “low,” don’t panic. You are likely still producing enough to sustain your infant, as they don’t need much in the beginning. Continue to latch as much as possible (at least every two hours), and don’t supplement with formula unless your doctor advises you to. With that being said…
  • Trust your doctor. You and your baby will have regular check-ups to ensure he/she is gaining the appropriate weight. If they’re not despite your best efforts, it’s 100% okay to supplement. Fed is best and no one wins if your baby is hungry and you’re stressed. Trust your doctor in terms of gauging when to keep trying and when to supplement.

Above all, try to remember that while this is a totally natural experience, sometimes (especially for those with chronic illness) things don’t work like they’re “naturally” supposed to. image5Cut yourself some slack. Becoming a mother is stressful, but if you are feeling overwhelmed, talk to someone. Postpartum depression and anxiety are very real and as a mother with chronic illness, you may be more prone to those feelings. Seek out help from your spouse/partner, enlist nearby family/friends for support, and keep in close contact with your doctor to manage your symptoms.

And if nursing doesn’t work out for you, be kind to yourself. Your baby will still grow up to be healthy and loved, and that’s all that really matters.

Check out Stacy’s blog: https://gutsy-girlblog.com/

Connect with her on Instagram: @gutsygirlblog

 

 

The days are long, but the years are short with chronic illness

The days are long, but the years are short. Oftentimes this ‘saying’ is commonly shared when talking about parenting. This past weekend my first born turned two. A rush of emotions came over me as we celebrated my son Reid’s special day. I got to thinking—the same is true for life with chronic illness. Reids second bday

The days are long, but the years are short. When you hear that life-sentence uttered from a doctor, your world comes to a standstill. Everything from your past and everything in your future seems to come to an abrupt halt. You feel like you’re suffocating and there’s no way you can go on. But you do.

The days are long, but the years are short. As I come up on 14 years this summer since my diagnosis of Crohn’s disease, I can hardly recall who I was before my IBD. That person, that identity—seems somewhat foreign to me. When you think “14 years”, it sounds like a long time—but, it feels like a blink of an eye. It’s a blur of experiences—some painful, some amazing. I choose to focus on the amazing.

The days are long, but the years are short. When you’re dealing with abdominal pain, when everything just hurts, when you experience nausea and vomiting moments after you try and eat, the days feel endless. IMG_8476When you’re in the thick of a flare and when feel good days feel far from ever being a possibility, try and remember how fleeting these moments are.

The days are long, but the years are short. When you’re being rolled in for another CT scan in the emergency room, when the nurse can’t seem to get an IV started on the fifth try, when you’re dreading your injection, when the colonoscopy prep is making you gag on your knees in the middle of the night in the bathroom, when you’re up counting the hours before surgery, feeling like the world is on your shoulders—remind yourself, this too shall pass.

The days are long, but the years are short. With children as they grow up, we can visually see the physical change going on. Two years ago, my son was a newborn, IMG_6459today he’s a rumbustious, adorable, little ball of energy. Sure, we age, too—but we also mature mentally when it comes to our illness. What felt like the biggest obstacle and scare of our life, evolves into something that is a part of who we are, an identity that while not ideal, helps to define us.

The days are long, but the years are short. Every year without needing to be hospitalized, every year where you feel like you have your disease under control, every year where your health doesn’t take you away from the life you are yearning for, hold on to those years.

The days are long, but the years are short. Rather than wish time away, I try and remind myself how each and every comeback is stronger than the setback. That every time I’ve been knocked to my knees by my disease in the past, I’ve come out of the storm stronger and with greater perspective about this life I’ve been given.

The days are long, but the years are short. You don’t always have to love your life. You can certainly mourn the loss of who you were prior to diagnosis, lord knows I did. remedy-nsmith-stlouis-1283But I can promise you, that as life goes on and as the years since that moment of diagnosis get further and further in the rear view mirror, you will find a comfort in this identity.

The days are long, but the years are short. You will garner a confidence in your strength that wasn’t there years before. And someday, you too will pause and think about where you’ve been and how far you’ve come to reach this moment. I hope you give yourself a proverbial pat on the back to honor your resilience and determination to live your life despite all the what if’s, despite all the pain, despite all the worry. Because you my friend, are a warrior—day in and day out—and you are so much more than your disease.

Why my husband is much more than a caregiver, Dr. Phil

I still remember the moment I told my husband I had Crohn’s disease. It was a beautiful August afternoon. We sat overlooking water at a boathouse in St. Louis on our third date. As we enjoyed casual conversation and a mutual interest in one another, I knew I had to tell him about my chronic illness.

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Photo from our third date, the day I told Bobby I had Crohn’s disease.

Nervous to rock the boat. Scared to be judged. Worried it would tarnish the image of who I was so far. I just wanted to rip off the band aid and get this conversation over with.

It was never easy to navigate dating and relationships with my disease. I was diagnosed with Crohn’s at age 21 in 2005. I met Bobby in August 2013 at age 29. Rather than seem put off by my disease, he inquired and showed empathy from that point forward. Never once did he make me feel less than or unworthy of love. In that moment, I knew I had found someone special and I felt a huge sense of relief.

Fast forward to this past month and all the conversation surrounding Dr. Phil’s heartless and ignorant comments about caregiving and relationships. I didn’t see the episode live, but have seen the countless posts on social media being shared to prove him wrong. I watched the interview clip after the segment aired and couldn’t believe my eyes or my ears. Dr. Phil told an interabled couple that “100 out of 100 relationships that involve caregiving fail.”

Photo by J Elizabeth Photography www.jelizabethphotos.com

Helping me walk down stairs during our engagement photos–21 days post op from my bowel resection surgery. Photo cred: J. Elizabeth Photography

It pains me to even write the idiotic words that man said. Not only is it upsetting, but it breaks my heart to think of all the young, newly diagnosed chronic illness patients out there who were already wondering if they were worthy of love because of living with a disease.

IMG_0077I’m here to tell you that you are. I truly believe my vulnerability with my Crohn’s and how I deal with flare ups is a big part of why my husband fell in love with me. Chronic illness isn’t pretty. It forces you to see the world without rose-colored glasses. It makes you realize the importance of your health and how quickly it can be taken away from you.

There’s a reason why you say “in sickness and in health” in wedding vows. My husband chose to spend his life with me, because he loves all of me—even the part of me that is riddled with illness. People are cut out to be caregivers or they’re not. You’ll come across this in your life and know which family members and friends have a special way about them. Those who don’t have this trait and ability aren’t meant to marry people like you and me. And that’s fine.

But to say that 100 out of 100 couples will fail because caregiving is involved couldn’t be further from the truth. It’s through Bobby’s caregiving that I continue to fall more and more in love with him. It’s those moments when I need help to get through a pain-filled day that I’m reminded just how strong and unbreakable our love is.

IMG_9492Caregiving looks and means different things to everyone. It’s not just about being a caregiver in the hospital or at a nursing home. It’s taking care of the one(s) you love on a typical day at home. It can be something as simple as rubbing your back or taking care of the kids while you’re stuck in the bathroom. It can be dishing you out ice cream after you give yourself an injection. Or holding your hand on a walk outside following a hospitalization. It’s those caregiving moments in particular that remind me constantly of the everlasting love I’ve found and make me 100 percent positive we will make it through, for the rest of my life.

My words of advice for you—if you’re a caregiver, know how appreciated you are—for all the little things and the big things. photo by J Elizabeth Photography www.jelizabethphotos.comIf you’re someone dealing with a disability/disease—don’t allow Dr. Phil’s ridiculously inaccurate comments make you think you aren’t worthy of love, because you are and always will be.

 

 

Putting the war paint on and beating Leukemia: Lukas’s journey to wellness

I handed a few toys to the cashier. She smiled and asked me whose birthday it was. I paused and said…actually this is for my cousin’s son—he was just diagnosed with leukemia yesterday. Saying those words out loud was physically painful. Our family’s new reality seems surreal. IMG_8929I never dreamed I’d be walking around a toy store looking for gifts to comfort and distract my cousin’s darling, smiley, 21-month-old son. But here we are.

We all know how heartbreaking and scary cancer is. We’re aware of the devastation it causes and the havoc it reeks on thousands of families every single day. When this disease chooses to present in a child, a baby, it rips your heart out and reminds you of how fragile life is.

I come from a big, Greek family. We are incredibly close. Our friends even know who our cousins are. All our lives are intertwined in a beautiful way. Everyone is always amazed at the tight bond we share with one another, often not letting a day go by without being in contact. It’s all I’ve known my whole life. At times, many of us take this closeness for granted—because it’s our norm. When the going gets tough though, our family rallies like no other.

IMG_8786When we got the call March 19th that my cousin Nicole’s sweet boy Lukas was diagnosed with ALL (acute lymphoblastic leukemia) my mom and I let out deep guttural cries. It felt like an out of body experience. The tears poured down our faces. Life stopped in that moment. My husband had to run our 23-month-old son upstairs so he wouldn’t witness our despair. Our boys are only eight weeks apart. Our boys were supposed to have a play date two days later. But now, sweet Lukas was getting chemo in the hospital instead.

That’s how quickly it happened. That’s how fast my cousin’s life changed and flipped upside down. IMG_8932In the blink of a moment—she went from having two perfectly healthy sons—to finding out her baby was in for the fight of his life. A fight that would involve 3.5 years of chemotherapy. A fight that would involve countless nights in the hospital, setbacks, highs and lows with dire consequences, and having to watch your child take on the beast that is cancer.

I sat in the room while the oncologist walked through the treatment plan with my cousin, her husband and my aunt. She spoke gently and calmly. Her confidence was comforting. When she handed over a packet of stapled information with Lukas’s name on the top…followed by (“Acute Lymphoblastic Leukemia” below it) it felt like a punch to the gut. The words on the pages looked more like a college syllabus for an upcoming school year. Each day and treatment listed seemed overwhelming and scary. It’s going to be a long road ahead. A journey like no other. A battle that no child or parent should ever have to fight. A burden too cumbersome for anyone’s shoulders.

When Lukas received his chemo infusion that day, I looked at my cousin Nicole. IMG_8778She held her baby tightly, sobbing in silence as he looked around the room, unaware of the poison getting pumped through his veins. It killed me to see her go through this. It’s truly the unthinkable to watch someone you love hurt so badly as they take on the unknown.

Once you become a parent, these type of tragedies and health crises hit you in a whole different way. They remind us that no one is invincible, and you never know when the tide is going to change. As a parent, your child getting cancer is your worst nightmare. We all wish we could take it from him. Lukas is so young, so helpless. But he’s also so much more.

Lukas is resilient. Lukas is strong. Lukas is brave. Lukas is a fighter. This 25-pound boy, with so much life to live is not going to let cancer take him down. Lukas is going to show each and every one of us the power of prayer, the importance of faith and the strength we can find within ourselves even when we feel weak. He’s going to inspire and implore us to be better. IMG_8933He’s going to give life a whole new perspective. He’s going to thrive. Lukas is going to navigate these unknown waters and open our eyes to the beauty of a feel-good day.

And someday we’re all going to look back on these dark, difficult days and look at him and wonder how we got to this place. Someday Lukas will be free of cancer. Someday he’ll be a little boy who once had cancer. But for now, and always, he’s a warrior. Not only him, but his mom, dad and brother. The war paint is on. The first week of battle is almost over. And from this point forward they and we are all forever changed.

 

How it feels to be hospitalized as a mom with Crohn’s

It’s my greatest fear, having to be hospitalized with a Crohn’s flare as a mom of two little ones. It’s something I think about all too often. The thought alone scares me. It’s difficult to imagine the reality of the experience. Since becoming a mom, I’ve been fortunate enough to stay out of the hospital. Unfortunately, for a friend of mine in the IBD community—she’s had to face this reality all too often.

Her son, Beckham is two months older than Reid. Our little guys could pass for brothers. This week—a guest post from Brooke Retherford, a fellow IBD mama from Wisconsin. She shares the raw emotions she’s experienced since her diagnosis at age 13.

IMG_2014I’ve had my fair share of surprises and obstacles with Crohn’s disease. My patient journey includes numerous surgeries, multiple doctor appointments a week, sitting in hospitals getting Remicade infusions, switching up medications to tame a flare and my all-time favorite, hospitalizations for days at a time. Please note the sarcasm in that last sentence.

These instances are not by any means convenient or something I or anyone else with Crohn’s looks forward to. Hospitalizations are such an emotional time for someone fighting this disease. The uncertainty, the physical pain, being absent from work and home and causing those around you the inconvenience of throwing off schedules for a week at a time. But, the absolute worst part is adding an infant to the mix.

When my son was just 4 weeks old my Crohn’s reared its ugly head and sent me and my disease packing to the hospital for a week. IMG_2015When the pain presented, I tried everything I could to avoid the trip. I just wanted to stay home and live my life with a newborn, enjoy the snuggles and oddly enough the 3 am feedings. Then, the time came when I couldn’t even get through a feeding without needing to set him down so I could run to the bathroom. I knew it was time.

It was no walk in the park having to be away from a little one. I cried. I was upset and mad at my situation. I felt like a terrible mom for letting the disease consume my life and take me away from my child. Luckily, I have a great support system that understands the emotions behind a hospitalization. My husband always brings our son Beckham to the hospital. I get to FaceTime my family to say goodnight and get pictures of my son throughout the day. Family (1)

Unfortunately, that wasn’t my last stint in the hospital for Crohn’s. Now that our son is two, I have officially lost count of my time spent away from him. Hospitalizations never get easier. Especially now when he knows I am physically absent from his life and he asks, ‘where did Mommy go?’ It’s heartbreaking and frustrating.

There are always tears involved, mostly mine, but I’ve come to terms with the fact that I am a better mom for realizing that I need to make myself healthy and not let this disease define what type of parent I am.

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.

New FDA-approved colonoscopy prep available

This is a sponsored post. Salix Pharmaceuticals compensated me for this post. All opinions are my own. Certain product information has been included to meet regulations.

I’ll always remember the first time. I was 21 years old. I had just been diagnosed with a lifelong condition, for which there is no known cure—Crohn’s disease. In order to confirm the diagnosis, I was told I would need to undergo a colonoscopy during my hospitalization. The prep and the procedure felt like adding insult to injury. I was already dealing with a horrible flare up while coming to grips with the fact that I had a chronic condition. Having to drink a disgusting concoction, while rocking back in forth in pain on the toilet, still feels like a fresh memory. It was nearly 14 years ago.

IMG_3033My current gastroenterologist is all about the annual colonoscopy. Especially now that I’ve had inflammatory bowel disease (IBD) for over a decade. Let me tell you, those 365 days go fast. No matter how many colonoscopies I’ve had, the prep never gets easier. I vomit every single time. I cry. It’s an emotional experience. It’s a reminder that I’m not like the rest of the 35-year-old population. I shouldn’t be needing this test yet. But I do because I have Crohn’s. The prep leading up to the procedure makes me cringe as I write this…and I don’t even need another colonoscopy until early summer.

I know I’m not alone in my feelings about the prep. According to patients’ experiences and reported barriers to colonoscopy, most patients perceived the bowel preparation to be the most burdensome part of colonoscopy. This is where Salix Pharmaceuticals comes in. They market PLENVU® (polyethylene glycol 3350, sodium ascorbate, sodium sulfate, ascorbic acid, sodium chloride and potassium chloride for oral solution), a bowel prep cleanse with less active ingredient to drink than some other bowel preps. PLENVU is a 1 liter bowel preparation cleanser available in the United States and in clinical studies, more than 66 percent of patients found the taste to be “acceptable” or “very acceptable”. The PLENVU bowel prep is the only FDA-approved prep for either same-day morning-of-colonoscopy* dosing or 2-day split-dosing.

* The “One-Day Morning Dosing Regimen” (as it is labeled in the Prescribing Information) is referred to as “Same-Day Morning-of-Colonoscopy Dosing.”

INDICATIONS

  • PLENVU® (polyethylene glycol 3350, sodium ascorbate, sodium sulfate, ascorbic acid, sodium chloride, and potassium chloride for oral solution) is a prescription medication used by adults to clean the colon before a colonoscopy

IMPORTANT SAFETY INFORMATION

  • Do not take PLENVU® if you have a blockage in your intestine (bowel obstruction), an opening in the wall of your stomach or intestine (bowel perforation), problems with food or fluid emptying from your stomach (gastric retention), a problem with food moving too slowly through your intestines (ileus), a very dilated large intestine, or an allergy to any of the ingredients in PLENVU®.

(See additional Important Safety Information below and click here for full Prescribing Information for PLENVU®.)

Colonoscopies aren’t something that only IBD patients need to worry about. For people at average risk for colorectal cancer, the American Cancer Society recommends a regular screening for adults starting at age 45. According to the CDC, colorectal cancer is the second leading cause of cancer-related deaths in men and women in the U.S. Additionally, American Cancer Society estimates there will be 101,420 new cases of colon cancer and 44,180 cases of rectal cancer in 2019. And because it’s National Colorectal Cancer Awareness Month, if you’re 45 or older, I encourage you to be proactive and vigilant about your health and schedule your colonoscopy today. By getting a routine colonoscopy, you can increase your chances of nipping the disease in the bud, before it’s too late.

Click here to learn more about PLENVU and talk with your doctor and inquire about this new prep. I’ve already done so with my GI. I plan to try PLENVU during my colonoscopy this summer.

PLENVU’s Indications and Important Safety Information:

INDICATION

PLENVU® (polyethylene glycol 3350, sodium ascorbate, sodium sulfate, ascorbic acid, sodium chloride, and potassium chloride for oral solution) is a prescription medication used by adults to clean the colon before a colonoscopy.

IMPORTANT SAFETY INFORMATION

  • Do not take PLENVU® if you have a blockage in your intestine (bowel obstruction), an opening in the wall of your stomach or intestine (bowel perforation), problems with food or fluid emptying from your stomach (gastric retention), a problem with food moving too slowly through your intestines (ileus), a very dilated large intestine, or an allergy to any of the ingredients in PLENVU®.
  • It is important to drink sufficient clear liquids before, during, and after the use of PLENVU®. Be sure to consume additional clear liquids after the first dose and second dose of PLENVU®. Stop drinking liquids 2 hours prior to colonoscopy.
  • Before you take PLENVU®, talk to your doctor if you:
    • Have problems with serious loss of body fluid (dehydration) and changes in blood salts (electrolytes).
    • Have heart problems or take medication that affects your heart. Your doctor may consider obtaining an electrocardiogram (ECG) test if you are at an increased risk for heart rhythm abnormalities.
    • Have a history of seizures or take antiseizure medication.
    • Have kidney problems or take medication that affects kidney function. Your doctor may want to perform blood testing before and after your colonoscopy.
    • Have a history of stomach or bowel problems, such as ulcerative colitis, a bowel blockage, or a suspected opening in the wall of your stomach or intestine.
    • Have problems swallowing, heartburn (gastric reflux), or if you inhale food or fluid into your lungs when eating or drinking (aspirate).
    • Have a condition that destroys red blood cells, called glucose-6-phosphate dehydrogenase (G6PD) deficiency.
    • Are withdrawing from drinking alcohol.
    • Have phenylketonuria (PKU). PLENVU® contains aspartame equivalent to 491 mg of phenylalanine per treatment.
    • Are pregnant or plan to become pregnant.
    • Are breastfeeding or plan to breastfeed.
  • PLENVU® may affect how other medications work. Tell your doctor about all other medications (including prescription and nonprescription medicines, vitamins, and herbal supplements) you take before you take PLENVU®. Do not take oral medications within 1 hour before or after starting each dose of PLENVU®.
  • Symptoms of serious allergic reactions may include skin rash, itching, raised red patches on your skin (hives), swelling of the face, lips, tongue, and throat, and kidney problems.
  • In clinical studies with PLENVU®, the most common side effects in patients taking PLENVU® were nausea, vomiting, dehydration, and abdominal pain/discomfort.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please click here for full Prescribing Information for PLENVU®.

For product information, adverse event reports, and product complaint reports, please contact:

Salix Product Information Call Center

Phone: 1-800-321-4576

Fax: 1-510-595-8183

Email: salixmc@dlss.com

 

 

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.