This post is sponsored by the Autoimmune Association. All thoughts and opinions shared are my own.
An educated patient is an empowered patient. Over the weekend the Autoimmune Association presented its Inaugural Autoimmune Summit that aimed to do just that. The virtual two-day event featured 23 educational sessions and more than 50 autoimmune experts including physicians, nurses, policy experts, and of course, patient advocates.
The Summit covered a wide variety of important topics that impact patients and caregivers who live with autoimmune conditions. I had the opportunity to moderate a panel discussion about fertility, family planning, and pregnancy alongside Dr. Marla Dubinsky, Chief of Pediatric Gastroenterology at Mount Sinai and Co-Director of the Susan and Leonard Feinstein Inflammatory Bowel Disease Clinical Center and Mariah Leach, a mom of three who lives with Rheumatoid Arthritis and Founder of Mamas Facing Forward. As an IBD mom of three chidren myself, I’m extremely passionate about sharing guidance and support for fellow women on this subject.
During the discussion, Dr. Dubinsky touched on many aspects of the journey to motherhood and beyond with IBD, but one comment she made resonated with me. She said the greatest gift a woman can give their child, is to stay on their medication, and allow their baby to thrive in an uninflamed environment. As someone who needed and depended on my biologic with all three of my pregnancies that comforted me greatly and really struck a chord.
Other topics of discussion during the Summit included tips and tricks for managing multiple specialists to clinical trials, health equity, advocating on Capitol Hill, and complementary medicine.
A dream come true
Lilly Stairs, Vice Chair of the Board of the Autoimmune Association and Summit Lead, lives with Crohn’s disease and arthritis. As a patient advocate, she understands the vital importance of providing those who live with chronic health conditions to share their voice and articulate their needs and struggles.
“It has been a dream of mine and the Autoimmune Association’s to plan an event that unites community members from across autoimmune conditions. Our patient odysseys share deeply rooted similarities. By coming together, we can accelerate autoimmune education, awareness, advocacy, treatment, and someday, cures.”
Goals of the Summit
The goals for the Summit were three-fold. Organizers and presenters like myself hope you walked away feeling connected to people across the patient community, while learning tangible tips for managing your autoimmune conditions. Lastly, the hope is that attendees and Summit participants feel energized and excited about what the bright future holds for those living with autoimmune diseases.
Lilly went on to say, “Events like the Autoimmune Summit are essential engagements for patients and caregivers to participate in. These events provide tools to navigate life with chronic illness and empower patients with the knowledge they need to be “CEO, secretary, and treasurer of your care” as Hetlena Johnson, Lupus Patient Advocate so eloquently stated in the Managing Multiple Autoimmune Conditions panel.”
Events like this are a reminder that we are not alone in our journeys. Even though chronic illness can be extremely isolating, events like the Autoimmune Summit offer the opportunity for connection that often feels like much needed chicken soup for the soul. The camaraderie that is possible even though Zoom has a lasting impact on helping to lift the burden and self-doubt many patients face.
From the Speakers
Tina Aswani Omprakesh participated in a panel on complementary medicine and autoimmunity. As an ostomate who juggles Crohn’s disease, Gastroparesis, and IBS, she knows firsthand how imperative it is to take on illness with multiple approaches.
“This is an important subject that’s often not discussed in the autoimmune space. The reality is that many patients are thinking about exploring it but don’t know how to navigate it in a way that can help complement their existing therapies. These conversations are essential to proliferate both credible information and sources of complementary therapies so patients can truly live their best lives possible.”
Molly Schreiber lives with Type 1 Diabetes, Rheumatoid Arthritis, and POTS. During the Summit, she spoke about what it’s like to manage multiple autoimmune conditions.
“Anytime I can share my story, my hope is that attendees feel less alone in their battle with chronic illness. We may have different health conditions, but our fight is often the same—pain management, medical providers who listen, and affordable medications we can easily obtain.”
Alisha Bridges is a patient advocate who lives with Psoriasis. She participated in a breakout session geared towards dermatology. She says having the chance to speak at the Autoimmune Summit was an honor.
“I hope my story helped viewers to better understand the unique challenges of living with psoriasis as a woman of color especially in the clinical trials sphere. These conversations are imperative to elicit change for better care of patients of all backgrounds.”
It’s our hope attendees discovered tips for managing autoimmune disease from patient advocates like myself who understand your reality, while also learning about the latest research and future treatments on the horizon.
Did you miss tuning into the first-ever Autoimmune Summit? No worries! All the presentations were recorded and will be shared in the weeks ahead. I’ll be sure to share the Fertility, Family Planning, and Pregnancy discussion I was a part of on my social media channels as soon as the video becomes available.
Thank you to all who tuned in, to all who participated, to the organizers, like Lilly, and the generous sponsors who made this happen. It’s amazing to see what’s possible when patients have a proverbial seat at the table alongside medical professionals and digital health companies. Our voices matter and time and time again we’re being heard loud and clear.
This post is sponsored by Lin Health. All thoughts and opinions shared are my own.
Chronic pain can be extremely lonely, overwhelming, and debilitating. It impacts 50 million Americans and is widely considered untreatable by the medical community. This is where Lin Health, a cutting-edge online, comprehensive pain treatment, and management program comes into play. Launched just three months ago for patients, this digital health solution is on a mission to help transform the lives of those who deal with pain daily.
Founder Abigail Hirsch, who is a clinical psychologist,was inspired to create Lin Health because she found it incredibly troubling how common pain is and discovered the lack of support available to the patient community.
“I refused to believe that these people were subjected to a life of suffering without answers. When we were looking for funding, I was shocked how many MDs wondered why we would want to work with THOSE people, who seek drugs or disability claims. I had never heard patients talked about in such a horrible manner. And I am so excited to get to work every day with THOSE people. It turns out THOSE people are survivors, fighters, mothers, husbands… wonderful people for whom the medical community has not delivered. I can’t tell you how exciting it is to wake up every day and know we get to keep helping people, many of whom have struggled for so long, finally get on the path to better.”
And this is a path that Lin Health’s Director of Product, Alissa Link, is quite familiar with. Alissa was diagnosed with Crohn’s disease as a freshman in college after years of misguided diagnoses and countless rounds of tests, and experienced relief from the condition using Lin’s model of care.
“This is truly my calling. My experience with pain and chronic illness has shaped my entire career! This deep experiential knowledge gives me a tremendous amount of empathy for those who are suffering from chronic conditions, and an intimate appreciation for the faults and friction points within the healthcare system. Where I see a broken system, I know there has to be a better way, and every day I feel grateful and invigorated building a new care model that can fill those gaps and offer the type of support that people truly need to heal.”
In 2013, Alissa tried to taper off one of her medications and had one of the most intense periods of symptoms in her entire journey with Crohn’s. She developed a fistula and had surgery to remove 10 cm of her small intestine. After the surgery, instead of going on a biologic like her doctor advised to prevent disease recurrence, she chose to make lifestyle changes by switching her diet and using a range of stress-management techniques that have kept her in remission and medication-free ever since.
The Ins and Outs of The New Care Model
Since Lin Health opened their proverbial door to patient members in May, 2021, thousands of chronic illness patients have signed up to learn more about this integrative digital health solution for chronic pain.
Abigail explains that Lin Health empowers its members by looking at “a full person picture” and taking a step back to see “the whole elephant.”
“Once we are all seeing the same complete picture, we also provide member-specific resources to both learn more about what kind of “elephant” they are coping with and what are the best tools for taming their pain beast. And then, piece-by-piece, slowly and steadily, our coaches go down the journey of building a new approach to pain together with our members.”
The team at Lin Health wants every physician, behavioral health specialist, physical therapist, and nutritionist to learn about modern pain science.
“Too many people out there are hearing things from well-intentioned providers who are accidentally making their patients’ pain worse — when, a simple switch to sharing current understandings of pain, could empower patients to hop on the train to better! And of course, I want everyone who is suffering from pain that could be reduced or resolved to have access to good, science-based treatment and help,” said Abigail.
Lin Health is powered by real people who can really help. They are not a chat-bot trying to fit us into a box, or a patient education platform lacking human interactions.
“We give you a customized treatment plan built specifically for you. And we pair you with a compassionate, caring, and helpful health coach who will be with you every step of your journey on your path towards better,” explained Abigail.
The Holistic Approach to Managing Pain
Chronic pain treatment usually relies primarily on prescription drugs that are designed to temporarily suppress symptoms with little regard for other factors that might be contributing to the pain.
“An integrative, or “holistic,” approach that includes the right prescription drugs to manage symptoms, but also utilizes non-invasive treatments that are focused on helping people create real, sustainable improvements in their pain levels and functioning. These complementary treatments can include areas in your life that are important but neglected by the traditional pain model, such as sleep, behavioral health, mental health, smoking, weight, etc.,” said Abigail.
Life with Crohn’s has provided Alissa with perspective that helps her empathize with Lin Health members and understand where they are coming from. Her advice?
“Stay hopeful and grateful. Be kind to yourself. Thank your body and brain for the things you can do and avoid dwelling in what you can’t. Simple shifts in your perception and attitude can ripple into large impacts. Trust your gut (literally! and listen to what your body is telling you. For example, it was so obvious to me that stress caused my symptoms, yet no doctor ever talked about this or what to do about it. A quote that really helped flip my perspective on my stress and symptoms comes from Jon Kabbat-Zin: “You can’t stop the waves, but you can learn how to surf.” I’m grateful every day for the lessons Crohn’s has taught me and how my disease has guided my career path and enabled me to help others.”
As an IBD mom of three who stayed on my Humira (adalimumab) injections until late into my third trimester with all my pregnancies, I recognized the importance of contributing to ongoing research about the safety and efficacy of biologics. When I was approached to participate in the PIANO (Pregnancy Inflammatory bowel disease And Neonatal Outcomes) study for my pregnancy this past year I jumped at the opportunity. While I knew staying on my medication until 37 weeks pregnant would pass Humira through to my baby and that it is considered to be safe, I didn’t know much beyond that.
My son Connor is 8 weeks today. The day of my C-section blood samples were taken from him, me, and my umbilical cord. The purpose of the samples was to measure the concentration of the Humira at the time of delivery. The process in the hospital was simple. Detailed instructions were mailed to me at home ahead of time. When I walked into the hospital for my scheduled C-section my husband and I handed over a small box that included three vials, an ice pack, and proper packaging for the transfer from St. Louis to California to the nurse who was prepping me for surgery. Once all the samples were ready to go my husband made a quick stop at FedEx to hand over the package and voila the science of it all was on its way.
The past few weeks we’ve anxiously awaited the results. This week, we received them. I have an almost 4.5-year-old son, a 2.5-year-old daughter, and a newborn. With each pregnancy—Crohn’s-wise, the experience was flawless. I felt like a “normal” person. Foods that typically trigger me, didn’t cause any issues. If I wanted a cup of coffee, I didn’t pay the price. It felt glorious to have zero abdominal pain for all those months and know that my babies were thriving in utero. I credit my own health and deep remission and my children’s health to the fact that I chose to follow my care team’s recommendations and stay on Humira until the final weeks of my pregnancies.
When the results popped up in my email inbox, I was nursing Connor. I felt a few emotions, more than I had anticipated. I hesitated to open it. Even though I could see Reid and Sophia watching TV and know how healthy they are, it still made me feel a rush of mom guilt to know that I needed a heavy-duty medication to bring all three of my children into this world and that even though studies like PIANO have shown the safety profile, that as IBD moms we still worry and wish we didn’t need to do injections or get infusions while a life is growing inside of us.
I texted my husband Bobby while he was at work and expressed how I was feeling. His response, “It’s all good babe, I’m sure it’s emotional but kids are all healthy and in good shape so just thankful for that. You did good.” Having a supportive partner through your patient journey and especially through parenthood makes all the difference.
Here are my PIANO study findings. I stopped medication at 37 weeks, and my last injection was 16 days prior to C-Section and this blood test.
My blood—7.3 mcg/mL
Connor’s blood—6.8 mcg/mL
Cord blood—5.9 mcg/mL
When I saw the numbers, my eyes filled with tears. Even though just looking at the numbers didn’t mean a whole lot, it just showed me that my baby had medication in his system, and it made me feel sad. I knew this would be the case—but I want to be transparent that it did upset me, even though I know it was for the best and have seen how my other children have thrived despite their exposure.
I waited to share this so the PIANO study’s lead organizer, Dr. Uma Mahadevan could weigh in and provide further explanation for not only myself, but for our community. She told me that in the PIANO study, the concentration of Humira for baby on average is 9.4 mcg/ml (range 2.5-26) and for moms 25 mcg/ml (range 0-56.4). As stated above, I was at 7.3 mcg/ml and Connor was 6.8 mcg/ml.
“Cord blood is the blood from the baby that is left in the umbilical cord and placenta after birth. It comes from the baby, so those concentrations are similar. Beginning around week 14 of pregnancy the placenta has a receptor called FcRn. This grabs antibody by the “Fc” portion and pulls it actively from mom to baby. This is most efficient in the third trimester when 80% of antibody transfer occurs. Since Humira is an antibody, it gets pulled across the placenta as well.”
Dr. Mahadevan went on to say that baby often has more drug at birth than the mom, but that was not the case for me. The PIANO study has shown several positive outcomes for IBD moms:
There is not an association between the amount of drug present in a baby at birth with infections.
Even though there was no increased risk of infection seen based on exposure to anti-TNF or on drug level at birth, in theory these babies (like Connor) are considered immunocompromised until no drug is present. For Humira that’s about 3 months, for Remicade (infliximab) that’s about six months.
“My advice to moms is that all the risks to the baby seem to come from disease flare rather than from medication. In a large French study, the risk of infection in baby was in moms who flared in the third trimester, not based on anti-TNF exposure. Risk of pre-term birth is increased with disease activity, not with anti-TNF medication. Risk of miscarriage comes with disease activity, not anti-TNF use. There is a clear and significant risk from having a flare during pregnancy. Compared to babies of IBD moms not exposed to medications, there is no evidence of increased harm to the baby (at least out to 4 years of age) from TNF exposure,” explained Dr. Mahadevan.
Hearing this was music to my ears and was extremely comforting. Point being—there’s a much greater likelihood of pregnancy complications if your IBD is not managed and if you flare than if you stay on your medication and keep your IBD controlled.
“We have completed our breastfeeding study which showed very minimal transfer (a fraction of what transfers by placental blood) and no evidence of harm to baby for breastfeeding when a mother is on anti-TNF.”
Knowing this about breastfeeding gives me great peace of mind as I continue the journey with my son, while still managing my Crohn’s by taking my Humira.
I also want to add that Dr. Mahadevan and her research team have been a huge support to me throughout the entire study. When she read a draft of this article and saw how I felt when I received the email with the blood results, she asked for recommendations about how to better deliver the findings to women. This meant a lot—I suggested sharing the range in blood concentration similar to how lab results are delivered on a patient portal and following up with an email or phone call to explain what the numbers mean further. Those touchpoints of support can make a big difference. I also shared my results over the patient portal with my GI and she called me to discuss them as well, which was helpful.
Interested in participating in the PIANO study? There’s always a need for more women to enroll! So far, 1,700 women have done so. There’s especially a need for women on newer drugs like Stelara, Entyvio, and Xeljanz.Click here to get involved.
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’ve been daydreaming about being a mom since you were a little girl or found your lifelong partner and are exploring the possibility of a future that includes pregnancy and motherhood, creating a family when you have IBD takes a bit more planning than for the average person. My journey to motherhood unfolded differently than I had anticipated. For as long as I can remember, long before my Crohn’s disease diagnosis at age 21, I aspired to one day have children.
After I received my IBD diagnosis in 2005, and then when I was put on a biologic in 2008, my mind often raced when it came to reaching the milestone of motherhood. But being that I was only in my early 20s and single, I didn’t feel much pressure and figured I would cross that bridge when it was time for me to walk it.
Fast forward to June 2015, I had just gotten engaged to the love of my life, Bobby. Less than a month later I was hospitalized with my third bowel obstruction in 16 months. Surgery was the only option. On August 1, 2015, while planning my wedding, I had 18 inches of my small intestine removed, along with my appendix, Meckel’s diverticulum, and ileocecal valve. Up to that point, surgery had been my greatest fear, but my care team comforted me by saying the bowel resection would provide me with a “fresh start.” A fresh start that would help when it came time for family planning. A fresh start that put me into remission for the first time in my decade-long battle with the disease, paving the way for married, family life.
Leaning on the IBD Parenthood Project for Guidance
When you’re a woman with IBD who hopes to be a mom one day, it’s not unusual to feel lost and confused about how to navigate family planning, pregnancy, and beyond. Even though the thought of having a family can feel daunting—believe me I get it—with proper planning and care, women with IBD can have healthy pregnancies and healthy babies. But sadly, many women with IBD decide not to have children based on misperceptions about their disease and pregnancy. The number of women with IBD who are voluntarily childless is three times greater than that of the general population. It’s heartbreaking to think of all the women with IBD who could be moms but are not because they aren’t aware resources like the IBD Parenthood Project exist.
Openly communicating your future plans with your care team long before you want to start trying for a baby helps set the stage for what lies ahead and enables your gastroenterologist (GI) to tailor your treatment plan accordingly. When I had my post-operative appointment with my GI in November 2015, eight months before my wedding, my husband and I let her know we wanted to capitalize on my surgical remission and get pregnant as soon as we could after our wedding day. With that intel, my GI put me on a prescription prenatal vitamin, folic acid, and vitamin D, along with my biologic. Now as a mom of three healthy children, who had three healthy pregnancies while living with Crohn’s, I credit my GI for her proactive efforts that set me up for success and deep remission over the past six-plus years. Prior to trying to conceive, I also scheduled a colonoscopy to further confirm that my Crohn’s was under control. My GI would walk in after each procedure with a big grin on her face and would give us a thumbs up and say we had the green light to try for a baby. Having her stamp of approval made me feel much more at ease.
Time is of the Essence
I know I was extremely fortunate with the timing of my surgery and remission and the fact that I did not have any issues getting pregnant. It can be much more challenging and heartbreaking for others. If you’re flaring or symptomatic, the likelihood of those issues presenting in pregnancy is significant. When it comes to the “rule of thirds”— one third of women with symptoms improve, one third get worse, and one third experience the same symptoms as prior to pregnancy — you want to be mindful of how you’re feeling. I understand remission doesn’t happen for everyone. I get that it’s hard to be patient when all you want is to have a baby and your biological clock is ticking. But don’t rush into a pregnancy unless your health is in check.
As a trusted voice in the GI community, the American Gastroenterological Association is dedicated to improving the care of women of childbearing years living with IBD and is committed to redefining industry standards to further optimize health outcomes for mother, baby, and provider. That’s why it created the IBD Parenthood Project as a resource for women and HCPs through the pregnancy journey.
While various providers can be consulted during pregnancy (OB, dietitian, lactation specialist, psychologist, NP, PA, midwife, and pediatrician once the baby is born), an OB and/or maternal fetal medicine specialist should lead pregnancy-related care and a GI with expertise in IBD should lead IBD care. Communication among these providers, as well as any other providers involved, is very important. During the family planning process and pregnancy, think of yourself as the point person, leading the charge and making sure each member of your care team is in the know.
Be Overly Transparent
If pregnancy and motherhood is something you are hoping to embark on as part of your life journey, be proactive and articulate your needs and wants, even if they are years down the road. The IBD Parenthood Project toolkit does most of the homework for you and lays the groundwork for your roadmap. It’s empowering to be prepared and to be well-versed on how to best manage pregnancy while taking on IBD.
Now that my family of five is complete, when I reflect on how we came to be, I’m grateful for the resources and support I had every step of the way and that my Crohn’s disease didn’t rob me of the future I had always hoped for.
This post is sponsored by Naturally Free from IBD—all thoughts and opinions are my own.
She’s a doctor with IBD who says her call to medicine began from her own hospital bed. Dr. Christina Campbell, DO, Certified Functional Medicine Physician, Board Certified Emergency Medicine was diagnosed with Crohn’s disease 40 years ago when she was only 12 years old. She’s utilized her own personal struggles and setbacks to guide the way she treats patients and helps others in our community. Through her own journey, she says many doctors left her feeling frightened, unmotivated, even angry. Christina learned early on about the importance of bed-side manner, compassionate care, and the gift of not only listening, but hearing what a patient is expressing. Her overarching goal—to be a physician who inspires faith, confidence, and a will to fight within her patients.
She’s dedicated her life’s work to facilitating and growing the value of a patient-physician partnership rather than what she calls a “DOCtatorship.” Christina believes that a personalized approach to health works better than recipe medicine, meaning she’s passionate about finding the root cause of disease and improving underlying health and the body’s biochemistry by intervening at the level of the root cause, through a functional medicine approach. Before we dig into the amazing work she’s doing, let’s take a walk down memory lane to see how Christina got to the point where she is today.
Christina’s Journey with Crohn’s
A diagnosis of IBD in 1983 looked a lot different than present day—and not for the better. When she was 14 years old, Christina faced a near death experience from extensive bleeding and lesions from her mouth to her anus. Her gastroenterologist said she had one of the worst cases of IBD he had ever seen and shared her case at global medical conferences and in case studies. Christina was averse to undergoing a complete colectomy and colostomy, so she underwent six months of bowel rest (nothing by mouth). She received all hydration and nutrition through an IV in her veins around her heart called a Hickman catheter. At the time, the only medications available for Crohn’s were Sulfasalazine and Prednisone. Can you imagine?!
Since her diagnosis, Christina has been on many different medications through the years (Asacol, Delzicol, Sulfasalazine, any number of antibiotics, steroids, Toradol, Tylenol, Tylenol #3, Vicodin, Percocet, Compazine, Phenergan, Tigan, Tagamet, Pepcid, Bentyl.) When the first biologic was approved for treatment of Crohn’s (Remicade in 1998), she was in remission and graduating from medical school.
“My personal story is fraught with difficulties and each of my struggles has blessed me with a deep understanding of others and the ability to empathize and connect with patients. I have learned how to listen and really hear what they are saying. I have learned the power of creating a therapeutic partnership. My goal for each of my health participants is to match their lifespan to their health span. Quality of life alongside quantity of life is key. My personal journey has taught me that it only takes one step in a new direction to change the entire path of one’s life. It has also shown me the power of understanding your personal timeline. Looking back at our past journey helps us to understand the path that has led us to where we are,” Christina explains.
The Power of Responding to the Root Cause
Before Christina knew how to treat root cause issues and was solely utilizing conventional medicine, she says her immune system remained dysregulated. She was treating her symptoms with medications that acted like band-aides without addressing the cause.
“My functional medicine training has taught me the value of information and the concept that many with the same diagnosis may have completely different root causes. Utilizing detailed functional labs to discover altered biochemistry is an incredible tool to getting things back on track. These labs are not used in conventional medicine where the focus is on illness, not on wellness. It is a completely different perspective, which makes all the difference in helping someone find not just improved health, but optimal wellness.”
When it comes to discovering optimal wellness, Christina says this includes investigating genetics, epigenetics, metabolomics, oxidative stress, cellular energy and mitochondrial health, detoxification pathways, gut health and microbiome imbalances, inflammatory factors, and so much more.
“Once we uncover this information, we can begin to make changes personalized to your life, your body, your biochemistry, your genetics, your mind, and your spirit. Patience and grace with oneself are paramount to health as are understanding and forgiveness.”
The Transcend 3-step signature program
Christina works with IBD patients through her 3-step signature process to discover the root cause of symptoms, intervene at that level, revitalize health, and teach people how to maintain and excel for the rest of their lives. She uses natural and lifestyle interventions to create a personalized program which improves the health participant’s innate healing abilities to reverse symptoms, decrease pain, and improve all aspects of their lives.
“My Transcend program is my signature 3-step process which guides you through your precision blueprint for regenerating a healthy, joyful, vital you! This program is the culmination of 23 + years of medical expertise and 40 years’ experience as a Crohn’s disease patient. It is my passion project to help as many IBD patients as I can! I am on a mission to change the medical approach to Crohn’s and UC leading to fewer surgeries, stopping the path to health decline and disability by finding and fixing the root cause. We will Transcend IBD together living healthy vibrant lives.”
The process begins with uncovering your health history and detailing your timeline. Next, Christina works with patients to order specialized cutting-edge functional lab studies to help pinpoint where the most critical areas of intervention are needed. The third step is the Excel phase where you learn how to maintain these changes and continue to progress over time.
Christina is hosting an online Zoom webinarSeptember 1 at 7pm EST. By attending this webinar, you will learn three secrets for managing IBD and have an opportunity to ask questions. Tickets are $9.95 and limited in number. Get your ticket today!
Ready to Make a Change?
Set up an initial consultation here for men and here for women. Use coupon code Natalie20 for 20% off any time in 2021. HSA/FSA are applicable. This consultation is the first step to discovery. During this consultation you will discuss your body’s problematic areas as well as the areas where you are succeeding based on extensive intake paperwork and a 60-minute consultation. Potential interventions will be discussed, labs will be ordered, and a personalized care plan will be created.
Christina says, “I provide options for anyone who meets with me. However, I do not invite everyone into my signature 3-step Transcend program. It is important that we both feel we are a fit to work together to make this program successful. You must be ready to make the necessary changes and be open to new information. You must focus on progress and commit to never letting your self-doubt stop you from having what you want. There is hope! You can change your health and life for the better.”
Six years ago, I was shaking like a leaf getting rolled into the operating room for bowel resection surgery. Six years ago, I felt overwhelmed by the thought of my body getting cut into, by the realization of my body having scars, by the fear of the unknown, and feeling as though I had failed myself and those close to me. The first decade I had Crohn’s disease, I always thought of surgery as the last resort. With each flare up and hospitalization, my biggest worry was needing a surgery of some sort. I constantly wondered about becoming one of the 50% of people with Crohn’s who ultimately end up with surgery. August 1, 2015, I became part of that statistic, when I had 18 inches of my small intestine, appendix, ileocecal valve, and Meckel’s Diverticulum removed. Surgery went from being an option to a necessity.
Looking back now—I want you to know if you need surgery, it’s not a reflection of failure on your part as a patient. While it may feel like the world is crashing down around you, you’ll see the pain, the fear, the recovery—it’s all fleeting. Time waits for no one. Before you know it, you’ll be like me. I blinked and it’s been six years. The scars and memories remain, but as more and more time passes, they become less of a big deal.
I’ve had several fellow IBD’ers reach out with questions recently about bowel resection surgery—everything from bleeding to bloating, asking me about my experience, and surprisingly it’s hard for me to remember those details!
I credit bowel resection surgery for removing a decade of disease from my body (not curing me) but giving me a fresh start and ultimately putting me into surgical remission. Remission that has been maintained for six years now. Prior to surgery, the first ten years I had Crohn’s, I was never in remission. Since surgery I was able to get to a place in my disease journey where family planning and pregnancy were possible without any complications or waiting. I’ve been able to bring three babies into the world and haven’t needed to be hospitalized for my Crohn’s since becoming a mom. I went for a walk with my husband and three kids yesterday (August 1, 2021) and found myself reflecting and feeling a great deal of gratitude as I thought about the stark contrast of where I was six years ago in comparison to now.
Tips for Surgery: Before and After
Take a before photo. The day before my surgery, I took a photo of myself standing in front of the bathroom mirror in my bra and underwear so that I could remember what my body looked like before it had scars. I took the picture for myself and have never shared it. When I look at the picture now, I see a girl with sadness in her eyes and a longing for days without pain. I see a girl who is petrified of what could be and praying for relief. I see a thin, untarnished body on the outside, but one that is very sick on the inside. I highly recommend you take a photo of yourself prior to surgery so you can capture that moment. One day you’ll look back on that time and be able to see how far you’ve come. You won’t think of your scars in a negative way, but rather a reminder of all you’ve overcome. I don’t even notice my scars when I look in the mirror now.
Communicate with your surgeon. If your surgery isn’t an emergency and you have some time to talk with your surgeon, make sure you do. Talk with your care team about what the surgery will entail—how many inches of intestine will be removed, if an ostomy is a possibility, where they will do incisions, etc. This will help you mentally prepare for what’s to come. My surgeon came into my hospital room prior to my bowel resection and asked me where I would want the incisions. We knew I would have the laparoscopic incisions, but we discussed a horizontal vs. vertical incision as well. I said I wanted the incision to be as low as possible—he told me he would do a “c-section incision” …which worked out wonderfully for me. I know of many people who have had a couple inches of intestine removed and have a large vertical scar (I had 18 inches taken) and that type of incision was not necessary.
Once you’ve had surgery push yourself to get up and get moving. Don’t overdo it, but every step, every movement will help you heal. Before you know it, you’ll be able to bend down and tie your shoes, walk a little further, and stand a little taller. After my surgery it was a struggle to walk around my family room, then before I knew it, I was walking outside…each day making it to one house further around the block. Before I knew it, I was able to take long walks. When you’re laughing, coughing, sneezing, or driving, have a small pillow nearby to hold against your incision, this will alleviate a lot of the pain. The first two weeks is the hardest. Once you hit the 2-week mark, you’ll feel a ton better. You’ll be able to drive and get around with minimal pain. Just hold on to that thought those initial days when it’s emotionally and physically pretty brutal. I remember crying my first night at home because I was so overwhelmed by the pain and my inability to get out of my own bed. At the time a family member was battling ALS. Her fight and knowing that her health was deteriorating daily, while mine was improving with each hour that passed, gave me perspective and brought me back to earth.
Trust in your care team. Once you have surgery, then the priority is to determine how managing your IBD will look moving forward. I, like many, had this false sense of security after surgery that I felt so great, I wouldn’t need to go back on my biologic…or any medicine for that matter. After a lot of tears and discussion, I followed my GI’s recommendation to re-start Humira and add a bunch of vitamins and supplements to the mix (Vitamin D, Calcium, Folic Acid, and a prescription prenatal). I give my GI a lot of credit for being proactive and having a “come to Jesus” talk with me, if you will. She warned me my Crohn’s disease is aggressive and by going med-free, my risk of being back on the operating table 3-5 years down the road would go up exponentially. Six years later, I’m so glad I listened.
Be patient with your healing. I’ve had three C-sections and bowel resection surgery, and the recovery is very different. I try to explain this to women who come to me with questions wondering about the two. With a C-section you have incisional pain/burning, but with an IBD-related surgery you also have to heal from the inside, too. Organs are cut, removed, and reattached. Your digestion needs to recalibrate. It’s a lot more intense of a recovery than a C-section (which I’m going through right now). Be patient with your body. Ease back into normal activities. After my bowel resection surgery, it took me nearly 8 weeks to return to work full-time at my desk job. Prior to returning to the office, I worked half days for two weeks from home because it took time to heal enough to sit upright in a chair. As your digestion re-works itself, it’s not unusual to have an accident or not be able to ‘hold it’ the same as you could prior. For me, this was temporary. But in those initial weeks and months, it’s a good idea to have a change of clothes in your car or packed with you and to be mindful of where the nearest bathroom is. I had one accident during my recovery—luckily, I was home alone (working a half day), it was mortifying, and I was by myself. Don’t try and rush back to normalcy, give yourself time to heal mentally, physically, and emotionally.
If you find out you need surgery—it’s understandable to be upset. But also give yourself a chance to think of all that could be possible. Try and focus on the promise of how surgery could help you get into remission or at least help you in having more “feel good” days. It’s normal to grieve and to be tearful and fearful, but I hope you find comfort in knowing once you wake up from surgery, you will be on the road to a recovery that paves the way for feeling empowered against your illness. And from that point forward you won’t be as scared of future surgeries because you’ll have a better idea of what to expect and a better understanding of how it feels to be well after being in pain for so long.
After a lot of thought and consideration, I decided to hold off on getting my COVID-19 vaccines until after I delivered my son. Before we dig deeper into this topic, I want to clarify that this was solely my choice, everyone needs to do what they are most comfortable with. Since the pandemic began, unprecedented pressure and stress has been placed on pregnant and lactating women to make one decision or another. For me, as a stay-at-home mom, who continued to keep a low profile while pregnant, I felt more at ease waiting to get my vaccines until after my son was out of my body. My care team made up of a maternal fetal medicine doctor, OB, and gastroenterologist all supported my choice to wait.
My main reasoning was limiting the variables of exposure. All my kids were exposed to Humira while in utero. While there are long term studies that show the safety and efficacy of biologics in pregnancy, you never know. If down the road my son had any health complications or issues, I didn’t want to have to grapple with whether my biologic or a vaccine contributed or were to blame. As an IBD mom, we deal with enough guilt as it is.
So, I chose to wait. Anxiously. Patiently. Luckily, I delivered my third child, Connor Christopher, July 14th, and did not encounter any COVID-19 scares while pregnant. Once I was home from the hospital following my C-section, I talked with my gastroenterologist and OB about getting my first COVID vaccine and scheduled an appointment at Walgreens ASAP.
Getting the first jab
Wednesday, July 21, I finally got my first dose! A little late to the party, but I’m currently exclusively breastfeeding (and pumping), and I’m hopeful that once I’m fully vaccinated (two weeks after my second dose in August), my son will receive antibodies from the vaccine that way. It felt a bit surreal to finally be at a point where I felt comfortable with my personal choice to get the vaccine.
According to the CDC, since January 2020, there have been 34 million cases and 607,000 deaths. As of July 21st, 161.9 million people are fully vaccinated—that’s 48.8% of the total population, or 57.1% of the population older than age 12. Virus variants threaten new outbreaks among the unvaccinated.
Much like making decisions to manage IBD, it’s imperative our community looks at the benefits vs. the risks of getting the vaccine.
Words from leading medical experts in the IBD community
This past week Dr. David Rubin, MD, Professor of Medicine, University of Chicago presented, “Updates on COVID-19 for Patients with Inflammatory Bowel Disease”.
“Everyone needs to be vaccinated, this includes pregnant women and new moms. The Delta Variant is VERY contagious. The data in IBD is reassuring when it comes to immune responsiveness compared to the general population, especially with the two dose mRNA vaccines. Antibodies against many things are transmitted in colostrum, and that may be the anti-SARS-CoV-2 spike antibodies too, which may provide protection to the baby. It’s definitely NOT dangerous to breastfeed after vaccination.”
Speaking of the Delta Variant, according to Dr. Rubin’s presentation as well as guidance from the CDC, “Delta was 1% of COVID-19 cases during the week of April 10th. By the week of July 3rd, Delta is estimated to account for 57% of new COVID-19 cases. Within a matter of 12 weeks of being introduced to the US population, it became the dominant variant here.
Dr. Uma Mahadevan, MD, University of California San Francisco agrees, saying given the ongoing crisis with COVID-19, all eligible people should get vaccinated.
“Breastfeeding mothers can get vaccinated per CDC guidelines and there is data that the antibody from the vaccine crosses to the infant via breastmilk, possibly providing them with protection as well! For many infants of moms with IBD, they have detectable levels of biologic agents in their blood for the first 6 months of life. Having antibody against SARS-Co-V-2 may provide them some protection against getting ill if exposed to the virus.”
Dr. Meenakshi Bewtra, MD, MPH, PhD, Penn Medicine, has IBD herself and has been a vocal advocate for our patient community since the start of the pandemic. She implores everyone to get the vaccine, immediately.
“Don’t wait. In fact, I, every doctor I know, American College of Gastroenterology, and Maternal Fetal Medicine recommend getting the COVID-19 vaccine while you are pregnant. Why? Because we’ve seen what happens to pregnant women who get COVID. There are women who got the vaccine in trials; there were women who got vaccinated while pregnant (>10,000 at this point)—we have a lot of data. The evidence is crystal clear. The same holds for getting it while breastfeeding. COVID is real, it’s out there; you can get sick and die; you can transit it to your infant or others in your house. There is absolutely no reason why anyone should not be getting vaccinated unless you know you have an allergy to something in the vaccines themselves. Your protective antibodies can pass to the infant.”
COVID-19 in the IBD Community and Vaccine Response
Thanks to the SECURE-IBD database, we have more guidance about how those of us with Crohn’s and ulcerative colitis have responded and continue to respond to not only COVID, but the vaccine. People with IBD do not have an increased risk of getting it. Aminosalicylates, biologics, and immunomodulators show no increased risk of severe COVID- 19. Steroids are associated with worse outcomes. And biologic therapy is associated with decreased risk of severe COVID-19 outcomes.
One of the main concerns many of us in the chronic illness community on immunosuppressive drugs have wondered about is the efficacy of the vaccines in our body. Good news—a recent study of 246 patients with IBD who received both doses of the vaccine showed similar adverse events as in the general population. Sore arm, headache, and fatigue are the most common adverse effects of the vaccine. All I had after my first Pfizer vaccine was a sore arm. More importantly, the study showed no increase in IBD flares.
The Prevent-COVID study shows even more promising data with more than 1,700 participants with IBD. Click here to see results of the study—everything from rates of vaccine side effects to lab titers three months out.
As of now, there’s no recommendation or approval regarding a booster vaccine. Pfizer announced that their clinical trial data showed that a third shot may increase antibody levels, but nothing has been published yet. Without more research, it’s unclear if an increase in antibody levels will provide greater protection from the virus than two doses.
Get Involved in COVID-19 Vaccine studies
University of Chicago Inflammatory Bowel Disease Center COVID-19 Vaccine in IBD Study
This study is analyzing the durability, safety, and efficacy of COVID-19 vaccines in patients with IBD, If you are interested in participating in the study (whether you have already been vaccinated or not) please email: email@example.com.
Prevent COVID Research Study
If you are 12 to 17 and have received your first COVID-19 vaccine in the last 90 days, you may be able to take part in PREVENT COVID, a research study to learn about the vaccine experiences of people with IBD. Click here to learn more.
The purpose of this research being conducted at Cedars-Sinai is to understand the effects of vaccination against COVID-19 in people with IBD. To achieve this goal, a national and local group of adults with IBD who are eligible to receive any available vaccine against COVID-19 are being recruited. Within this group we will evaluate the antibody levels of the body’s response to the vaccine. Questions about the study? Contact the CORALE-V IBD Research Team at Cedars-Sinai at firstname.lastname@example.org or call 310-423-5643.
Washington University in St. Louis: COVID-19 Vaccine Response in Patients with Autoimmune Disease
School of Medicine researchers are leading a clinical trial to evaluate the safety and effectiveness of COVID-19 vaccines in people taking immunosuppressive drugs. Such drugs are prescribed to treat autoimmune diseases, including arthritis, Crohn’s disease, and psoriasis. Researchers will enroll up to 500 adults ages 18 and older in the St. Louis region. They are recruiting health-care workers at the School of Medicine and patients seen in Washington University outpatient clinics. Eligible patients who have preregistered for the COVID-19 vaccine will be contacted to assess their interest in being recruited into the study. For information about participating in the trial, email email@example.com, or contact either Alia El-Qunni at 314-249-1151 or Lily McMorrow at 314-280-3894.
Use your smartphone to tell the CDC about any side effects after getting the COVID-19 vaccine. The tool uses text messaging and web surveys to provide personalized health check-ins after you receive a COVID-19 vaccine. Depending on your responses, someone from the CDC may call to check on you. Participation is voluntary and you can opt out at any time. Sign up at: www.vsafe.cdc.gov.
Starting on a biologic and finding one that helps manage your IBD can be challenging physically, mentally, and emotionally. Nearly 13 years ago (July 14, 2008) I sat in my GI’s office like a fish out of water petrified of injecting myself with four Humira shots. I remember how daunting and overwhelming taking the plunge into life on a biologic was and know I would have given anything to hear firsthand experiences from fellow IBD patients. This inspired me to launch a special series on Lights, Camera, Crohn’s hearing firsthand accounts from people like you and me, living life on biologics. So far, I’ve covered Remicade and Entyvio.
This week—we tackle Stelara (ustekinumab). Stelara is categorized as a human interleukin-12 and -23 antagonist. Patients receive a one-hour loading dose infusion and follow up with an injection every 8 weeks. As you’ll read, some patients receive their injection every 6 weeks, others every 4. Stelara is indicated for Crohn’s disease, ulcerative colitis, severe plaque psoriasis, and active psoriatic arthritis. As a biologic, it joined the IBD game in September 2016 for Crohn’s disease and October 2019 for Ulcerative Colitis.
“I’ve been on Stelara for almost 5 years. I started taking it right when the FDA approved it for Crohn’s disease. I have only good things to say, because it’s keeping me in remission. It’s easy to administer and doesn’t burn like Humira used to (prior to the Citrate-free formula). I stayed on Stelara throughout both my pregnancies. My GI had me skip my last dose both times I was pregnant, and I re-started my injections once the babies were here,” said Ashley Miller.
Patient Advocate and Co-Founder of IBD Desis, Tina Aswani Omprakash, joined a clinical trial for Stelara to treat her Crohn’s disease. She says it took months to work, but it was the first time in a decade of having IBD and enduring more than 20 surgeries that she was able to achieve remission.
“At that juncture, I thought my life would always be in shambles and that I would never be able to rise from the ashes of this disease. But here I am today pursuing advocacy work and going to graduate school part-time. Modern medicine is nothing short of a miracle and I can’t help but count my blessings every single day to have been given another chance at life again. Thank you, Stelara, for making me whole again.”
Click here to learn more about Tina’s clinical trial experience with Stelara.
Making the Switch
Lauren Gregory is an IBD mom and a pediatric hospitalist. Even as a physician herself, she was nervous about switching biologics. Prior to starting on Stelara, she took Humira injections for 8 years. Unfortunately, the Humira induced numerous medication related side effects that really affected her quality of life.
“I was worried that Stelara wouldn’t work and that I would feel even worse. Switching medications ended up being the best decision. I have been in remission since starting Stelara four years ago and feel better than I have since diagnosis. Stelara also allowed me to have a healthy pregnancy and baby!”
Jenna Ferrara recently made the switch from Remicade to Stelara. Last week, she did her first self-injection and says Janssen was beyond helpful throughout the process. Click here to learn about the Nurse Navigator Program. The program provides a registered nurse (in-person) to help support you as you learn to give yourself injections.
“Between the nurse navigator and sending a training nurse to my house, they made it so easy. I was nervous before my first shot, but thanks to the nurse, it was great!! I’m still waiting to see results, but things have been slowly getting better after only two doses.”
“I tried Stelara after Humira failed me and it never helped or worked from the start, but regardless it was sold to me as the best option. My attending at the time even said it was his top choice for patients and would have put me on it from the start if he had been my GI who diagnosed me. I was super disappointed it failed, but now I’m on Remicade and feeling better than ever,” said Julie Mueller.
Erin O’Keefe was diagnosed with ulcerative colitis in 2017 and initially was able to control her IBD with mesalamine. She started Humira in January 2020 and had what was believed to be a drug-related reaction that landed her in the hospital for 2 weeks and the ICU for 3 days.
“After I was discharged, I was started on Stelara, and I couldn’t be happier with the results. My symptoms are minimal, and I have even been able to re-introduce foods that I tended to stay away from. The injection is easy and I’m so happy not to be taking pills daily. Fingers crossed I can stay on Stelara for many years to come!”
“My 15-year-old son started Stelara last fall after a Humira fail (he was on Humira for 4 months when he developed psoriasis). It seems to be working as his markers and symptoms have slowly subsided. He has also put on some much-needed weight. Therefore, his doctors have recommended that he step up to the adult dose. Their aim to fully eradicate the inflammation—his calprotectin is still elevated. While Stelara is approved for pediatric use for psoriasis, it’s not yet approved for Crohn’s…so there have not been any studies.”-Michelle Boas
Hayley Weiss had to switch to Stelara after Humira caused her to get Psoriasis on the bottom on her feet and the palms of her hands. She just celebrated two years of being on Stelara. The 8-week dosing wasn’t doing enough to keep her IBD under control, so she was switched to every 6 weeks.
“I was doing well for awhile on the 6-week injections, but then at about 5 weeks I was getting symptomatic, so my doctor decided to actually give me another loading dose and I kept on with the 6 weeks for a little while until September of last year. At that time, my doctor approved me for every 4 weeks and that is what I have been doing.”
“I switched to Stelara from Humira in February 2019. I feel the best I’ve ever felt in a long time. A lot less breakthrough flares, energy levels are back, and inflammation numbers are lower than when I was on Humira. I haven’t had any negative reactions and have zero complaints!”- Erin Forman Carmiel
Martin R. was on Humira for about a decade. During that time, he calls the drug a “game changer” for bringing stability to his life when it came to managing his Crohn’s disease and reducing the need for steroids and antibiotics.
“After the regular blood tests for the azathioprine which I’ve been taking since 1992, I showed I had developed antibodies to Humira. I chose Stelara two years ago and it seems to have taken over where Humira left off. I don’t have additional side effects and a longer interval between injections, so that’s a bonus.”
After two years of remission, special education teacher, Jasmine Edwards, started flaring, despite being on Entyvio. Previously, Humira and Remicade gave her drug-induced lupus. Now, after just receiving her first dose of Stelara, she’s hoping the fourth biologic is a charm.
“I’m looking forward to the freedom of not having to get monthly infusions at the doctor’s office. I really hope Stelara puts me in LASTING remission so I can get back to a better quality of life. I’ve been feeling well since my loading dose infusion, but I’m also on prednisone. The only side effect I had after the infusion was feeling tired. In four weeks, I will administer my first at-home injection. I’m nervous about giving myself a shot because with Humira I used the pen, but I’m READY for remission, so I’ll try anything!”
Amanda Hart has had two doses of Stelara so far. Unfortunately, her MRI still shows new inflammation.
“I’ve been increased to once every 4 weeks. If there is no improvement in three months with the higher dosage, I’ll be looking for a new approach. I was originally on Humira, but switched due to my symptoms. Sadly, the symptoms on Stelara have been worse and my diet is more restricted then when Humira was not considered effective anymore.”
Alli Butler was previously on Humira, she finds Stelara makes her feel similarly.
“I’m currently taking Stelara, it has worked great for me and got me through my third pregnancy. Hoping it continues to work well through my postpartum experience.”
Tips for Self-Injecting Stelara
Lori Plung has battled Crohn’s disease for more than 40 years. Since that time, she’s been on four different biologics. She credits Stelara as her easiest patient experience.
“Remicade and Entyvio are obviously infusions—they took time and planning to organize appointments at infusion centers and waiting there while being infused. I was on Humira which was nice to have the freedom to inject at home, but I didn’t like the pen model of injecting. I haven’t had any problems with Stelara. I started my loading dose infusion in April 2019 and give myself the injection every 8 weeks. I love that it’s a pre-filled syringe and that I can do the injection in my home.”
Claire Paschall recommends taking the injection out of the fridge so it can warmup to minimize the burn.
“The automatic needle pullback jolts if you take your thumb off once done and it can hurt (so slowly take your thumb off). I feel like it took longer to build up in my system than Remicade and Humira, however I haven’t had any side effects to report. I have been flaring with my rectal disease, but my small intestine disease is in remission.”
Plea for a Pen-Style Injection
Courtney Meyer started Stelara in March and immediately saw improvement with her symptoms. Previously, she had tried Remicade, Humira, and Entyvio.
“It’s so nice not to have to get an IV after the loading dose. The only downside is that it doesn’t come in a pen option like Humira, and I have difficulty with needles, so I get it administered by a nurse in my GI office every 8 weeks. They inject it in the back of my arm, so I don’t have to deal with the usual stomach or thigh injection sites. It’s the most convenient and easiest treatment of Crohn’s that I’ve been on in 15 years! I was able to stop other medications and I’m just on Stelara. No side effects so far.”
Julianne Bossert was diagnosed with Crohn’s more than 25 years ago. She was on Humira for almost 5 years and says it worked great, until it didn’t. She started Stelara in February and is gearing up for her fourth dose next week.
“I feel like I’m on the cusp of getting better, but not quite there yet. I’m about two weeks out of being off steroids that I have been on for a year. So, my crutch is now gone, and we will really begin to see if Stelara is working. My two biggest complaints are the shot itself. It’s not a pen like Humira, which was way easier to administer. The syringe is way scarier, and they show you how to inject it once and then off you go! Awful anxiety. The other complaint is how different the relief is. When I was due for my Humira about two to three days leading up to I was in bad shape…very sick. But I’d get the injection and feel better within an hour. Leading up to Stelara, I feel awful, get the shot, and still feel awful for days. The turnaround time isn’t as quick for me.”
Emily Beaman is an IBD mom of two who initially started on Humira and was switched to Stelara two years ago.
“I will say the only thing I don’t like is the injection. I prefer the Humira pen-style. I have yet to be able to give myself the injection which means I have to rely on my husband to do it. I find it hurts more than the original Humira did for me (the Citrate-free version wasn’t available while I was on it) I really wish they would come out with a pen-style injection. I worry about if I ever had to give it to myself…that I wouldn’t be able to.”
Stelara Tips for the IBDMom (or Dad!)
Brooke Abbott is a patient advocate, single mom, and co-founder of IBD Moms. She shares helpful tips for administering the injection whether at home or at your doctor’s office.
If injecting at home:
Keep an injecting kit. Have a small kit prepped with alcohol wipes, band-aids, and cotton balls or pads.
Prep the night before. Hydrate as much as possible and make sure you have your kit ready and prepped.
Injection day. Make it a relaxing event. Have your injection before a family movie night so you can get some cuddles in after injecting yourself or being injected.
Normalize your treatment. “Practice” with your little ones with a play doctor’s kit. I used to always play doctor and do fake injections, to normalize living like a patient for my little one.
If injecting at the doctor’s office:
Book Appointments to include self-care time. I try to book appointments for my injections early in the day so I can have time after to do something for me. Whether it’s going to grab a coffee and read, meet with a friend, or have a nice lunch.
Take the LO (little one) with you. I am all about including my LO in my patient life. I want him to be able to ask questions and voice concerns. So sometimes when he is out of school, I will take him with me. It’s good for him to hear the progression of the treatment and to see mommy being brave and getting an injection.
Multitask. Try and take all your blood tests and everything at one time. That way you don’t have to make any unnecessary trips to the doctor’s office.
Let’s Talk Side Effects
Overall, the consensus from patients was little to no side effects—which is a HUGE win. Of course, each person’s experience with IBD and with biologics is unique.
Stelara is the first biologic for Shanna Quinn. She started on it in July 2020 following bowel resection surgery. She found starting off with an infusion was a bit “scary” and much preferred giving herself a shot which she says is “so easy.” In her opinion, making the decision to start a biologic was the biggest hurdle, rather than choosing one.
“It doesn’t hurt, although you do have to go slow or else the medication will sting a bit. One drawback is that I get tired afterwards. I’ve learned to take the day and relax and sleep, if needed. I do my shots on the weekend to allow for that. My GI and I discussed a few options before choosing Stelara. I took a test that asked questions about priorities, risks, concerns, etc. The results gave me details about how each biologic stacked up against your concerns and priorities. Take the “IBD&Me” test for yourself here. Knowing you may need to be on a medication for life or knowing it may fail you is hard to wrap your brain around. I hope IBD will get way more targeted and specific regarding treatment options.”
Lyes Mauni Jalali has found the side effects of Stelara to be more draining than Remicade, but not as bad as Entyvio. He says the first three days after the injection he needs considerable rest.
“I have also noticed systemic night sweats as far out as five weeks after the injection. For me, this is unique to Stelara in terms of my individual experience. The silver lining is that Stelara seems to have generated more stability and normalcy from an IBD symptom perspective. My level of disease is quite severe and to date, Stelara has had the best outcome. One drawback however is that insurance companies are less willing to grant physicians discretion to prescribe more frequent injections. My GI has said he faces greater pushback on Stelara specifically.”
Paula Hepburn has been on Stelara for 1.5 years, it’s the only biologic she’s been on thus far. She feels like it’s working well to control her Crohn’s disease.
“The first infusion gave me crazy fatigue for four days and I often get tired after each injection. Sometimes it only lasts a few hours, sometimes into the next day. I feel fortunate to have access to this medication because it helps control my IBD so well.”
Madison Morgan has been on Stelara for 2 years. She started it following an ileocecal resection that involved the removal of 8 inches of intestine. Madison finds the injections to be easy. She does experience some side effects though.
“I get a headache immediately after the injection that lasts about 15 minutes, the worst side effect I’ve had is yeast infections and UTI’s, I’ve never had them until Stelara and have had 6-7 yeast infections in the last two years and 2 UTI’s. A couple weeks before my Stelara injection (once every 8 weeks, 95 mg), my arthritis from my Crohn’s gets pretty bad, but seems to get better after my injection.”
“Stelara has been amazing! Aside from the infusion loading dose, it’s quick and easy and fairly pain free. I have minimal side effects other than sometimes feeling sleepy after my injection, but other times I have crazy energy. Overall, this is the only biologic that has worked for me for more than a couple of years.”-Bethany Lowe
“I’ve found the injections to be almost painless and I’m a huge wimp with shots. It took a few tries to find the right timing and frequency for my shots, but I do them every 4 weeks and approximately 1-3 days before each shot, I start to get some IBD symptoms…so I know it’s working!”-Danielle Fries
Olivia Lippens was diagnosed with ulcerative colitis 20 years ago. She’s an IBD mom of 3. Lucky for her, she was able to get through the first 18 years of living with IBD without being on a biologic. Unfortunately, she experienced a postpartum flare two years ago that is still wreaking havoc on her life.
“I started Stelara about a year ago. It’s super easy to use. The only side effects I’ve felt are being tired for a day or two after the injection. I feel quite lucky that I was able to start Stelara, rather than other options. It’s easy to take because you do it at home, and the side effects are non-existent for me. Unfortunately, it hasn’t been as effective as we had hoped. I do my injection every 4 weeks instead of 8. From a tolerance and side effect standpoint, Stelara has been a good medication for me, but it still frightens me to be on a biologic. I know everybody manages this dance in their own way.”
Krista Cherrix has been on Stelara for one year. She prefers the syringe injection over the Humira pen but has unfortunately dealt with weight issues since starting it.
“I have gained a TON of weight on it and can’t seem to get it to budge even with diet and exercise. I also have not been able to get pregnant so far, which isn’t necessarily the drug, but I got pregnant with my first (pre-diagnosis) without trying.”
“I took Stelara monthly for nearly 2 years and had no side effects. My diarrhea was still frequent and after having an MRI and a colonoscopy, the results showed that I still have significant inflammation in my small bowel. I am going to be starting Humira in hopes of healing the inflammation.”-Marsha Gagnon
Dealing with Insurance and Cost
Shawn Bethea is an IBD patient advocate and author of “My Tummy Really Hurts”. Overall, she considers her experience on Stelara to be good, but wants others to know there have been some hurdles to cross along the way.
“At first, I truly didn’t think the medication would work for me. I was placed on the standard dosing and scheduled to receive my injection every 8 weeks. During the initial weeks I’d feel great! I had more energy and didn’t feel the sharp pains as I usually did (in my stomach area). I wasn’t going to the bathroom as often and even my Eczema seemed to be clearing up.”
However, after those first initial weeks, she noticed a decline. Her energy decreased, her Eczema became bothersome, and her joints would ache. She communicated her concerns with her GI who prescribed injections every four weeks.
“With any high dollar medication comes unique challenges to those of us who don’t live on a Beyonce budget. Between my insurance, the patient assistance program, and copay, the drug was running about $20,000 monthly. When you have insurance and nothing changes like a lapse of coverage or a job change, this is something you can possibly juggle (depending on the level of coverage/assistance, but mine was pretty good). The problem came in when I changed jobs, lost insurance, and had to wait for new insurance to take effect – which was delayed, of course.”
Shawn stopped taking Stelara, due to lack of insurance coverage, everything was impacted. She began to experience joint pain, became extremely tired, and was using the bathroom more—even experiencing extreme constipation.
“Overall, I love Stelara, but I hate the way our healthcare system operates. No drug should run half of someone’s salary monthly. But I subscribe to the system because I simply want to live and be healthy like everyone else.”
Jacquie Persson has been on Stelara since 2019. She started off with the recommended dosage of injecting every 8 weeks, but after 6 months, she was moved to every 4 weeks.
“Since starting Stelara, my Crohn’s disease has been well-managed I haven’t had to take prednisone since 2018, after depending on steroids on and off from 2016-2018. Financially, being on this drug is a little anxiety inducing. The list price is over $20,000 per injection and I’m constantly on edge wondering when or if my insurance will decide to stop covering it. My copay is over $200. I currently have copay assist which brings my out of pocket down to $5, but what if that program were to go away?”
“I started Stelara in December 2016 after Remicade failed me. I had success with small flares here and there. In March of 2021 I had a big flare—my first in about 5 years and was out of work for 2 months. My GI wanted to increase my Stelara from every 6 weeks to every 4, but my insurance repeatedly denied it and just finally approved it about a month ago, thankfully in time for me to be feeling better.” – Mary Fordham
“The dosing is wild! I started at 8 weeks and now I’m moving to six…and I know some people on every 4 weeks. Insurance has a really hard time approving more frequent injections.”-Catalina Berenblum
Click here to learn more about Janssen’s CarePath Savings Program for Stelara.
Success Stories on Stelara
“Stelara has been a Godsend for me. I had an ileocolic resection nearly five years ago and have maintained remission with Stelara and azathioprine since my surgery. The side effects have been minimal. For me, it’s been one of the easier injections I’ve used. It doesn’t sting or burn like Humira did prior to the release of the Citrate-free version. I take Stelara every four weeks instead of the typical eight.”-Jennifer Ryan Carmichael
Amanda Pennwell was diagnosed with Crohn’s when she was 8 years old. She’s now a mom of 3 and due with her fourth baby this October. She’s been on almost every drug approved for Crohn’s disease. She says she can honestly say Stelara has changed the severity of her Crohn’s the most significantly, with the least amount of side effects and the biggest improvement to her day-to-day life. She started Stelara in April 2019 after flaring with her twins. She was able to get pregnant, have a smooth postpartum experience and breastfeed her third baby while on it.
“Stelara helped me get my life back. This is something I never dreamed my broken body would ever be capable of doing. I’m so thankful that Stelara is continuing to work for me. I have been healthier than ever. I work out all the time and my body feels strong. I haven’t experienced abdominal pain more than a dozen times in the past two years. It’s truly remarkable. Stelara has enabled my husband and I to chase our dreams while raising our babies! I work part-time while staying home with the kids. We our building our dream home and I know I couldn’t keep up with it all if I felt the way I did two years ago. I’m thankful for research and better IBD drugs like Stelara.”
Patient Advocate, Founder & President of Patient Authentic, Lilly Stairs, credits Stelara for saving her life.
“I have been in medically controlled remission for nearly 8 years from all three of my autoimmune diseases – Crohn’s Disease, Psoriatic Arthritis, & Psoriasis. I went from bleeding ulcers in my small intestine and total body arthritis that left me paralyzed in pain to living symptom free and thriving as a solopreneur. I am so grateful for this brilliant medical innovation and only hope that someday all autoimmune patients can have this type of experience on a medication.”
Check out previous biologics that have been featured on Lights, Camera, Crohn’s. These articles have NO affiliation or guidance from pharma. All content was created thanks to countless IBD patients sharing their personal patient journeys with the hope of helping others.
It was the first biologic created to treat Crohn’s disease (and later ulcerative colitis). Remicade (Infliximab) was approved by the FDA in 1998 for Crohn’s and 2005 for UC. The medication set the stage for a new way of treating and targeting IBD. A lot has changed in the last 23 years when it comes to treating IBD with biologics (Crohn’s and Colitis Foundation Biologic Fact Sheet). As patients we’re “lucky” that more options are available, and several medications are on the horizon. But Remicade remains a tried-and-true treatment option for IBD patients.
A few weeks back, I shared an article on my blog entitled, “The Patient Experience: What The IBD Community Says About Entyvio.” The article featured viewpoints, experiences, and tips/tricks from several people with IBD who are currently taking Entyvio or have in the past. That article and this one have NO affiliation or guidance from pharma. This is strictly created from the IBD patient experience.
The discussion on Entyvio was well-received and from there, I decided to do an exposé if you will, about other biologics, too. When I was told I needed to start a biologic while lying in a hospital bed in 2008, my mind was racing. I felt like I had nowhere to turn. There were only two options at the time. I didn’t know what resource to trust or where to go for information. My hope is that these articles help comfort you as you make these important, lifechanging health decisions, and alleviate a bit of the fear associated with being on a biologic drug long-term. Use these candid quotes to serve as your roadmap to navigate the unknown.
Before we dig deep into Remicade from the patient and caregiver perspective—a reminder that much like the way IBD presents and manifests in each of us, each person’s experience with biologics is unique to them. Remember that your experience could be better and could be worse.
What does anti-TNF mean?
Each biologic is associated as a class of drug. Remicade is an anti-TNF, meaning that the medication blocks a protein in your immune system called TNF-alpha. That protein can cause inflammation in your body. People with IBD produce too much TNF-alpha, which can cause our immune systems to mistakenly attack cells in the GI tract. Anti-TNF biologics work to regulate this protein in our bodies.
The Patient Voice
In this article you’ll hear from those who just started Remicade in the last week to someone who has been receiving infusions for 21 years! Thanks to each and every person who offered input, I wasn’t able to feature everyone’s perspective, but your narrative helped guide this piece.
Amanda Rowe started Remicade nine months ago. She was hesitant to start a biologic, but ever since taking the plunge, she hasn’t looked back.
“I haven’t had any issues. I get pre-meds of Benadryl and Solumedrol because I got slightly itchy during one infusion. It’s a nice quiet time to sleep or I bring my phone and earbuds and watch a show. It’s 2 hours where I get a break from hearing, “Mom, I need…” I currently have no active disease after being in a bad flare for two years. I flared that long because I was afraid of starting a biologic. My GI explained everything to me and calmed my fears about possible side effects and I finally agreed. I just wish I would have started Remicade sooner, so I could have felt the way I do now.”
Phylicia Petit has Crohn’s and has been receiving Remicade infusions since she was a teenager 11 years ago, she’s grateful the biologic has worked well for her.
“I’ve had a dosage increase and have added mesalamine for better inflammation control. Other than those changes, I’ve been relatively symptom-free, which is a major blessing! I would highly recommend having home health do your infusions. I haven’t had to take off work for my infusions and it’s so nice to be in the comfort of my home…especially with COVID! It’s also cheaper for insurance. I use Janssen Care Path for financial help. It helps to cover your infusion costs. I fortunately have never had any side effects.”
IBD is a family affair for Kara Cady. She has ulcerative colitis; her dad was diagnosed with Crohn’s as a teen and her little sister was recently diagnosed with UC. She just started Remicade last week.
“I’m still on the loading doses. The infusion process is long! It’s about 3 hours for me. I am able to get mine at my GI’s office. I can bring my laptop and work from there. I was super nervous for my initial dose, but my main “issues” are feeling tired, and having a headache and sore throat after. I’m looking forward to getting on my regular Remicade schedule, as I’ve been in flare for about 6 months.”
Laura Steiner is a nurse practitioner with ulcerative colitis who has depended on Remicade for over seven years.
“I have had to increase my dosage and shorten the interval but continue to stay in remission while on it. I’m usually wiped out the day of and the day after. I get my infusions on Fridays, so I have the weekend to recover. The only downside is many major insurance companies are forcing patients to switch to biosimilars, so after 62 doses of Remicade, my next infusion in June will be Inflectra. I’m hoping it will work equally as well.”
Laura is not alone in this fear and dealing with barriers to care and insurance coverage is a reality for many. While working on this article, a social worker from an insurance company reached out to me and said in the last week alone she’s dealt with several cases of people who have had their Remicade denied. She’s helping them through appeals. Until you’re a person who is dependent on a medication for improved quality of life, where timing is of the essence for receiving it, it’s difficult to grasp the magnitude and the pressure of not being able to receive your medication when you need it and risking a flare spiraling out of control or losing your remission.
Meg Bender-Stephanski was on Remicade to treat her Crohn’s for about a year and half. It worked well for her, but she says the infusions were not only inconvenient but costly, so she ended up switching biologics.
“I was going to college in Oregon while my main insurance was based in California, and the out of pocket costs the first few infusions in Oregon were around $18,000. It ended up being cheaper for me to fly home every 8 weeks for an infusion than it was to receive it in Oregon! I also really wanted to study abroad, and it was incredibly difficult to figure out the logistics. Remicade did work well for me and sometimes I have regrets for switching off it for personal reasons.”
Advice for Infusion Days
Kelly Dwyer was diagnosed with Crohn’s in 2018, but experienced symptoms for several years prior. She has great advice for gearing up for infusion day and beyond.
Take along a caregiver for your first infusion, if you can, just in case you have a reaction.
Make sure you make a plan for pre-meds or no pre-meds with your GI before you go to the infusion center, so you don’t get surprised by their policies. Kelly takes Zyrtec the night before, so she doesn’t get drowsy and Tylenol right before the infusion to alleviate the headaches she gets towards the end of an infusion.
The first few infusions should be slow infusions, to make sure you don’t have a reaction. Kelly has continued to receive hers at a slow rate (2-2.5 hours) because her blood pressure tends to bottom out when the Remicade is pushed to a higher rate. But for many, a higher rate works and helps the infusion go quicker.
Switch arms and spots for your IV. Kelly says she saves her “big veins” for times when the nurses need to do a blood draw before the infusion and have to use a larger gauge needle.
Hydrate well the morning of the infusion and bring along a heating pad, as it may help to wrap it around your arm if you’re dehydrated before the IV is started.
Openly communicate with your infusion nurses. Let them know if you feel weird or off in any way. Nurses have seen it all and can be very reassuring and helpful, but you need to give them feedback so they can help you and act right away if you’re starting to feel poorly.
Your reaction one day may be different the next. Kelly says she doesn’t have consistent reactions each time, so it’s important to be vigilant and always be prepared to expect the unexpected.
For Kelly, she doesn’t start to feel the effects of Remicade for a few hours after the infusion. She gradually starts to feel more and more grumpy and tired. She gets a very particular kind of fatigue the day of her infusion. She says it’s a very numbing, all-encompassing, tiring feeling.
Be aware of what dosage you’ve been prescribed. Understand there are several variables that your GI can change if the Remicade isn’t working immediately or enough. The interval time between infusions can be shortened, and/or the concentration of the medication can be increased.
Remicade is often given with other immunomodulators, like Methotrexate. Talk with your GI about scheduling and timing for the infusions with your other medications.
If you’re just getting started on a biologic, your GI will likely tell you to get vaccinated for Shingles and Pneumonia before starting. You’ll also need to do an annual TB test.
Kelly also advises patients to be aware of insurance companies in the United States. Like we touched on at the start of this article, she says many are requiring people to switch from the brand name Remicade to a biosimilar of Infliximab.
“I’m making the switch over at my next infusion in July and my GI and I agreed that we felt confident on the data out of Europe about the efficacy of biosimilars. I recommend everyone with IBD to do their own research and have this conversation with your GI. Be proactive and prepared to discuss options when the time comes with your insurance company.”
Balancing the Logistics of Infusions and Work/Life
Megan Alloway has counted on Remicade to keep her Crohn’s under control for 21 years. She prefers to get her infusions on Friday so she can use the weekends to recoup because it makes her so exhausted.
“While Remicade has been a blessing to me for over two decades, it feels like every time I turn around, it’s time for another infusion.”
An OBGYN with Crohn’s who wished to remain anonymous, has been on Remicade since she was 18. She’s now 35 and still receives her infusions every six weeks. She credits Remicade for giving her a full quality of life and enabling her to stay out of the hospital.
“Since starting Remicade, I have been able to finish college, med school, and residency with my symptoms under control. I’ve stayed out the hospital ever since I started Remicade. My main complaint is how long the infusions take. Different infusion centers have different protocols and requirements, but usually mine take over two hours. It’s annoying to find that kind of time on a weekday and be able to take care of my own patients, but I have to do it for my health.”
Heather Richter agrees the time an infusion takes can be inconvenient, but she’s learned to make the most of the “me” time as an IBD mom with Crohn’s disease.
“I’ve learned to embrace the “alone” time. Be persistent at your infusions and if something seems off to you, speak up and make sure you feel like you’re being listened to. My infusion nurse gives me Benadryl and Tylenol beforehand, so if I have the kids taken care of, I find it helpful to nap and rest afterwards.”
Kristi Reppel has been taking on Crohn’s for 18 years. She received Remicade from December 2005 until August 2011. She switched biologics for a lifestyle change and started Cimzia in September 2016. She ended up back on Remicade in December 2016. She currently received 7.5 mg/k every 4 weeks instead of the typical 6-8 weeks.
“This biologic works for me. It gets me in remission and keeps me there. I am a lot less symptomatic, thanks to my medicine. The bad part of all this is my veins are scarring over because I only have a few good ones and those are almost gone. The post infusion exhaustion and headache can also be a lot. As an attorney, finding the time to sit through an infusion and schedule it around court room hearings can be rough. I cannot recommend enough about the importance of hydrating with water that has electrolytes like Smart Water around infusion day. It’s made a big difference for me!”
Linde Joy Parcels says Remicade allowed her to reach remission in high school. She had swollen and painful joints, and after starting the biologic, she experienced a complete transformation.
“Unfortunately, I metabolized Remicade too quickly and had to transition to Humira after one year. I loved getting to take a day off school while on Remicade and spent my infusions relaxing with my mom watching soap operas. That was the silver lining for me!”
The Caregiver Perspective—from a wife to moms of pediatric patients
Remicade has been a lifesaver for Rebecca Kaplan’s husband. Before starting a biologic, she says his Crohn’s was not well-controlled. He was on one medication, going to the bathroom 25-30 times a day. By the time her husband started Remicade, the damage had already been done and was irreversible, so they didn’t see the true impact of the biologic until after he had bowel resection surgery.
He’s been on Remicade for 11 years this summer and in that time, he’s been able to graduate with a master’s degree, work full time, work out, play softball, and attend family functions. He’s also put on close to 45 pounds and gone from malnourished and underweight to thriving.
“Remicade isn’t picture perfect – the few days after his infusion I like to say he becomes a toddler who can’t control their emotions. He’s extremely irritable and says it feels like his brain is on fire. He gets sinus infections more often than before (and apparently that’s not uncommon when you are on a biologic), and he still has some symptoms from time to time. But his last colonoscopy showed that he is in deep remission, and I know that he wouldn’t have achieved that without being on Remicade.”
Alexia Anastasia’s 11-year-old daughter started Remicade in February. The list of side effects and hearing a horror story from a friend who “had a friend who had a stroke” made her a nervous wreck. Ultimately, she looked at the research and the long history of pediatric use of Remicade and felt she was making the right decision alongside her daughter’s GI.
“It’s been a game changer. We learned quickly my daughter needs it every 4 weeks after trying to go for 6 weeks. I’m so grateful it seems to be working. Her fecal calprotectin is almost normal from originally being 3,460. Her inflammatory markers are back to normal. I just hope it keeps working and the side effects remain minimal. It’s been a challenging 5 months with this new diagnosis. Now that I can reflect, I’m grateful my daughter’s GI pushed for us to start a biologic immediately. My daughter was withering away before my eyes and now she is back on track.”
Beth Otto-Stapleton’s daughter Penny started on Remicade when she was diagnosed with Crohn’s disease in January 2017 at age four. She was given two infusions a few days apart while hospitalized during her first flare. Unfortunately, that is when Penny suffered heart damage and was diagnosed with heart failure because of the Remicade.
“She now does Vedolizumab infusions instead because it is a different class of biologic. We are thankful as a pediatric patient, Penny can go to a Children’s Hospital for treatments…it keeps the hard parts of the disease there and keeps our home a safe/comfy space. The great part about the infusions is that we also get blood work done and get instant feedback. I always ask the infusion nurse to give her an extra bag of fluids so she’s well hydrated.”
Dermatological Side Effects
While talking with patients about their Remicade experience, skin issues came up in a few conversations.
Remicade was the first biologic Dana Drengler tried. She says it worked the best and the longest for her. She was in full remission and lived a normal life while on it. Unfortunately, after about 3 years in, she started to develop red spots on her lower legs. They looked like broken blood vessels at first, but then started to spread and get larger, eventually turning into deep and painful ulcers.
“The ulcers covered my lower legs and became super painful, to the point where I couldn’t walk some days. It stumped my doctors, and they only thing they could think of was that it was a reaction to Remicade. They had me stop taking it and within a few months, my legs started to heal. I still have scars 5 years later!”
Mia Frakes has been using Remicade to control her Crohn’s inflammation since 2017, overall, she feels the medication does the trick, but she has what she calls the “oddest side effect”.
“I’ve been dealing with extremely red, dry, and flaky skin in strange areas like behind my ears and my belly button. My GI says she has seen this dry skin in other patients, too. I have to go to the dermatologist, and they give me topical medication to put on the dry areas, which seems to help.”
Madelynn Jessberger was diagnosed with Crohn’s in 2008, she’s been on Remicade the last three years. She was receiving infusions prior to getting her colon removed and was put back on the biologic after. Aside from some aches and tiredness after infusions, she also developed a rash.
“I developed psoriasis all over my body and my GI is unsure if it’s a side effect, a separate autoimmune disease, or an extra intestinal manifestation of Crohn’s. I manage the rash with thick creams and topical medicine from my dermatologist. Everyone is different, this is just my experience.”
Pregnancy + Motherhood and Remicade
Alyssa Leggett started Remicade in August 2018. At first, she was getting infusions every 8 weeks. Then, in 2019, two weeks before an infusion she started feeling fatigued and was dealing with urgency, pain, and diarrhea. Because of those symptoms, her infusions were moved to every 6 weeks.
“After I gave birth, my doctor wanted to switch me to the rapid rate infusion. I’ve been doing those since November 2020. They’re about an hour shorter and I don’t have any side effects from them. I feel like I can have a more stable life. I still get symptoms from time to time, but I attribute that to the food I eat. Thanks to Remicade, I reached remission and had a healthy, full-term pregnancy.”
Allie Heiman is grateful for how Remicade has helped prepare her body for motherhood.
“I haven’t had any side effects from Remicade and have found the infusion to be easiest in my hand with only minor bruising the next day or two. I started in March 2020 and was cleared to start trying for pregnancy in December 2020. After 13 years of negative scope results and being told I was not healthy enough for pregnancy, I could not be more thrilled with the outcome. I am hopeful to be a mom in the future, and grateful that Remicade made that a possibility with Crohn’s.”
Tayler Jansen is an IBD mom of two. “Remicade has been amazing! Remicade and Imuran have kept me in remission for the past 9 years and enabled me to have two healthy pregnancies.”
Shakila Almirantearena has identical 5-year-old twin girls. She was diagnosed with Crohn’s shortly after they were born and is currently in remission. Along with Remicade, she takes Methotrexate.
“I take Tylenol and Claritin at the infusion center to prevent any rash, etc. I usually take the whole day off work and really allow my body to rest. I haven’t had any major side effects. I’m usually tired the next few days and sometimes get a headache the day after my infusion, but Tylenol helps alleviate any pain.”
Christine Renee has had Crohn’s for 20 years, she’s a mom of two teens and a teacher.
“Remicade was a game changer for me compared to the previous meds I was on. I eventually developed antibodies to it, and it wasn’t as effective. My tips for those getting started are to not be afraid. I was so nervous about starting a biologic, but after the way I was feeling and the tests that my doctor performed, I knew it was the right thing to do. I started Stelara a few days ago and I’m hoping for similar results.”
Hydrate well the day before, day of, and day after.
Remember your headphones or AirPods so you can drown out the noise and watch a movie or show. Noise canceling headphones for the win!
Pack games and books to pass the time or your laptop so you can work.
Have someone else drive you when possible, in case you are drowsy from the Benadryl.
Pack snacks and drinks. Many infusion centers will also have this available for you.
Have a sweater or blanket!
Lauren Hopkins has been on Remicade well over a decade and receives what’s considered a “double dose” every 5 weeks. She’s found her sweet spot and has been able to maintain remission. She says, “Refrigerated Remicade mixed with room temperature saline feels COLD pumping into your veins. It shouldn’t hurt, so if it does, say something to your nurse so they can fix your IV.”
Have the Infusion Nurse run saline before and after your infusion to help with headaches.
Be your own best advocate. Speak up to your care team if something feels off, if your symptoms are persisting, or if you’re dealing with side effects that make your life challenging.
Remember if a biologic fails—it’s not on you, you didn’t fail anything, the drug failed you.
This article is sponsored by Nori Health. All thoughts and opinions shared are my own.
When Roeland Pater was diagnosed with Crohn’s disease nearly 20 years ago at age 19 there was a lot he didn’t realize and a lot he tried to ignore. He felt like he was on cruise control the first few years after surgery led him to remission. A few years later, his IBD took a turn and so did his perspective on his health.
“I started to realize that everything I did in life was impacting my disease. Suddenly, I couldn’t do whatever I wanted when I wanted. I became cautious of my actions and decisions. I tried to get a better grasp of how my IBD was impacting my life by receiving personalized care, but I was struggling trying to find a way to do that,” explained Roeland, Founder of Nori Health.
He noticed that during his medical treatment, he experienced a lack of support and education between hospital appointments, with little to no focus on quality of life or emphasis on how he was living day-to-day. Like many with IBD, this left Roeland feeling frustrated, misunderstood, and like there was no hope in controlling his condition.
The inspiration behind Nori Health
As a professional in the tech industry, this caused a proverbial light bulb to go off in Roeland’s head. He identified this massive gap in IBD care and decided to dedicate his life to solving the problem, with the goal of helping others. He recognized the need for a digital solution to help people like himself better manage and control their disease through daily behaviors. This is how the concept and mission for Nori Health was created. The company received an investment two years ago, which drove the concept into a real product and an app.
“Research shows that people living with a chronic inflammatory disease typically experience a 30% lower quality of life when compared to healthy individuals. Closing this gap is our mission. We believe this can be done by improving the understanding of the disease and its triggers through education and disease management. We aim to give patients in our program a sense of control over their disease management,” said Roeland.
How the Nori Health app works
The Nori Health app offers an 8-week program for IBD patients, guided by Nori, a digital coach. Through regular conversations (text-based—like WhatsApp) with Nori you receive personalized insights on factors that are proven to impact quality of life, and symptoms like pain and fatigue. These tips can be saved to your personal dashboard, and you can implement them into your daily routine, helping to keep your IBD under control.
“Most apps on the market are focused on a tracking model. This puts a lot of responsibility in the hands of the patient to monitor their daily activities and to discover patterns that might trigger symptoms. We changed this model around to best support the patients. Nori guides the patients through their health journey, with personalized, evidence-based factors. Nori provides the user with actionable tips that can be saved in the app, which can then be easily implemented into daily routines and lead to significant change,” said Roeland.
You can think of Nori as an artificial intelligence chat coach. You will work together to discover the lifestyle factors that impact how you feel and learn about simple changes you can make to gain more control of your disease. The end goal? To have less pain, more energy, and less strain on your mental health. Changes include everything from forming a new hydration routine, to talking to others about your condition, to reaching a point of acceptance of living with a chronic disease.
Main areas of focus include:
“We would like to emphasize the importance of finishing the 8-week program. Just like taking a full course of antibiotics, the true benefit from the app comes from completing the entire course of the program,” said Roeland.
The app is not currently open to the public, but I’m excited to offer 100 of my Lights, Camera, Crohn’s readers direct early access!
Download the Nori Health app for iPhone here and Android access here.
During registration use access code TEST212 for free access to the full program.
As you are given free access to the app, you will be asked to provide feedback on your progress (this is in-app, and anonymous). The Nori Health team will reach out to you by email to collect feedback about your experience as well.
Hopes for the future
Nori Health is deeply rooted in recognizing the power of community. The program was not only developed by an IBD patient but created thanks to the input of more than 600 patients in England, Netherlands, Belgium, France, and beyond. By participating in this initial launch, you can continue to provide valued feedback and guidance so that the team at Nori Health can make the appropriate tweaks and further understand unmet needs. So far, the feedback has been overwhelmingly positive and has shown that patients can be supported throughout their patient journey—whether they are newly diagnosed or a veteran patient.
“We’ve seen an average of 34% improvement in daily management (diet, stress, and exercising on a daily basis) with people who completed the 8-week program,” said Roeland. “Half of the participants whose social lives were compromised due to symptoms, started to reconnect with friends and loved ones. These are the types of improvements and shifts we had aspired to see happen when we created the app.”
By working with patients like himself, Roeland says these valuable insights have changed Nori Health’s focus and influenced them to go much deeper into the factors that improve quality of life.