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.
There’s power in surrendering to your IBD. It takes time to reach that mindset and it’s something author and patient advocate Christine Rich eloquently explains in her debut book, “Chronic”. Christine reached out to me when she was doing the initial writing research and we hit it off instantaneously. There’s something magical about connecting with strangers who understand your reality. You may be thousands of miles apart, with different back stories, but the common thread of life with chronic illness makes you feel seen, understood, and like lifelong friends.
Christine, now a 41-year-old married mom of two, was diagnosed with Crohn’s when she was in high school. It took time and struggle for her to truly process all she endured and reach the point where she is today.
“Many of us are taught to smile, be grateful, and make everyone else feel all comfy and cozy at the expense of our own comfort and well-being. The problem with these types of expectations is that they are lies that create loneliness and rage that eventually turn women against themselves and their potential.”
This quote really spoke to me. Having an invisible illness like Crohn’s disease, one of my biggest struggles in my 16-plus years since diagnosis has been feeling comfortable with making those around me know how uncomfortable I am in any given moment. It often feels a lot easier to just put a fake smile on and pretend you’re not in pain. But, in doing so, we are only hurting ourselves and deepening our personal struggles.
Advocate for and take care of your body
Christine’s powerful journey exemplifies all the work and personal development it takes to discover self-acceptance, grieve the loss of the former you, ask for help, and feel empowered. She speaks of the trajectory we all go on from the point of diagnosis to becoming a “veteran” patient years later. Take a moment to think of how you have personally transformed since you were told you had IBD. That transformation is one that takes a great deal of time and personal growth, but once you come out on the other side you won’t look back aside from reflecting on how far you’ve come.
“When I walked in for my outpatient procedure that warm July morning, I was arrogant, afraid, angry, and emotionally incompetent. When I walked out (well, wheeled out is more like it) I was humbled, vulnerable and awake in a way I had never been before in my adult life.”
This quote paints the picture of what life is like with flare ups that result in hospitalization and how we evolve through the setbacks. Often those in our lives think we’re “all healed” the moment we cross through the hospital doors, when in actuality the healing process is something, we’re constantly going and growing through.
Thinking of your body as an ally, not an enemy
One of my favorite chapters in “Chronic” is Chapter 14—The 4th F. Christine’s words and experiences really resonated with me.
“After working through the peak of my resistance, denial and rage I realized I had made an enemy out of my body for far too long. I had turned my back on her for being different. She wasn’t broken. I wasn’t broken. We were both sad and not fully aware of the other. I needed to learn how to stop fleeing and fighting my body…I needed to befriend it.”
She goes on to explain how altering her perception of the way she looks at her body and thinks about it, has shifted her entire life experience, and brought her to where she is today.
“I was faced with a choice: continue to carry this anger and self-hatred until it sunk my health, my marriage and my self completely, or decide to feel it all and acknowledge that my body is not and never was an apology, enemy or failure.”
Rather than our community thinking of Crohn’s and ulcerative colitis as a villain trying to destroy it, Christine asks what if we treated our chronic illness as a small child seeking love and attention?
“What if I could make friends with my body? Love her and care for her like I do my own children.”
In my own personal experience with Crohn’s, I’ve also learned to be in-tune to the subtle signs my body is trying to communicate through symptoms. Rather than constantly shutting that communication out and trying to push it to the back of my mind, like I did in my 20’s, now, I listen closely. That voice is part of a constant inner conversation that is part of every hour of every day of my life. Even in remission—each choice, each decision I make, has my Crohn’s in mind. Because as an IBD mom of three, my disease impacts a lot more than “just” me.
“Although I would never be able to control the circumstance of my diagnosis, I could control my perception and reaction to it. I could start telling the truth. I could stop punishing myself.”
This is so important. Even though we were all powerless over receiving our diagnoses, we’re not powerless in how we choose to live life after our diagnosis. The unpredictability of the disease may make us feel like we’re constantly on edge, spiraling out of control, but by being proactive rather than reactionary and by making efforts to manage our disease on every level (physical, emotional, and mental) we set ourselves up for a much-improved quality of life. IBD doesn’t have to be the headliner of our lives, it can be more of a footnote.
There’s no fixed end point with chronic illness
Christine says her therapist tells her to go to her 17-year-old newly diagnosed self as her current 41-year-old self and hold her hand. Tell her it’s not her fault. She goes on to explain how there’s no fixed end point with chronic illness and that the collective power of patients in the IBD community must discuss the mental anguish that’s often brushed under the rug.
“For the life of me I can’t figure out why mental health screenings aren’t standard practice of care. They test and screen us for everything else. They test our blood and our stool. They examine our rectums and colons. They poke and prod us top to bottom…they examine everything but our minds.”
She calls on all of us to be “chronic truth tellers”—which I love. The more doctors hear the same message over and over again directly from patients, the better chance we have to impact change. This takes effort and a heightened sense of vulnerability on our parts, but reaps endless benefits. We can’t take care of our whole self by simply focusing on the physical manifestations of our illness.
In “Chronic” one of my favorite lines is when Christine recalls how one of her yoga teachers once said, “what we resist—persists.” In IBD terms—every time we resist telling our care team, loved ones or friends about symptoms and struggles, things will only snowball and get worse.
“In order to advocate for ourselves we must also be chronically curious about ourselves. Being chronically curious about yourself starts with a clear understanding of what makes you feel good and whole.”
The overarching theme in this remarkable and must-read book are to keep showing up for yourself every day. Stop running away from the discomfort. Acknowledge it, explore it, and feel it—all of it—the good, the bad, the embarrassing. Christine Rich started out as a stranger on the phone with a dream of becoming an IBD patient advocate and published author. Not only did she accomplish all the above, but she did so in a way that even her personal experiences will feel like something you can relate to and grow from. As a fellow woman with IBD I stand up and give her a round of applause and a big hug for so bravely and candidly speaking the words so many before her felt too silenced and worried to share. Bravo, bravo, bravo.
When IBD mom Jessie Magaro was pregnant with her first child, she knew early on she wouldn’t be able to carry another baby herself. Between the hormones from IVF and her Crohn’s disease raging, there was no way her or her doctors felt comfortable embarking on another pregnancy.
Before she got pregnant, Jessie had been in remission for more than 12 years. With pregnancy and IBD, there’s the ‘rule of thirds.’ One third of women will see their symptoms improve, one third will stay the same, and one third get worse. Unfortunately, Jessie fell into the last category. Since having her daughter, Mary Ligon on New Year’s Eve 2018, Jessie’s gotten an ileostomy and has grappled with her Crohn’s being out of control. When her and her husband started thinking about baby number two, she knew surrogacy was her safest and smartest option.
“My daughter Millie (born in April 2021) needed me more to be there as her momma once she got here than she needed me to carry her. Not only was my baby safer, but I was in a much better position health-wise to care for both my daughters.”
The Surrogacy Process
Surprisingly, the FDA controls surrogacy and has specific requirements for the IVF part of the process. Jessie recommends making sure your fertility clinic is well-versed on how everything goes down. Surrogates and biological parents go through medical testing and psychological evaluations prior to the transfer of the embryo.
“This was probably the hardest part for me mentally and emotionally. I was so frustrated and hurt that I had to pay someone a pretty penny to tell the government that I was mentally ok to have my own baby. It was just pouring salt into an already large and festering wound. Can you imagine having to have a stranger tell you if it was ok or not for you to bring your own child into this world?”
It’s important to note that surrogacy laws vary state to state, but in Georgia (where Jessie lives), you must adopt your baby back from the surrogate, even if the child is 100% genetically yours.
“You hire an attorney (one for yourself and one for your surrogate) and they actually file a lawsuit claiming your parental rights to the unborn baby on your behalf. I had to go before a judge and field questions on why I was pursuing surrogacy and whether or not I felt my husband and I were able to take care of the child once it was born. Again, insult to injury.”
There are several ways to go about surrogacy:
You can hire an agency to find you a surrogate and manage the process
You can use a friend or family member (they will still have to be medically and psychologically cleared by the clinic)
You can try to find one via word of mouth in your community.
There are tons of Facebook groups where you can “match” with one (local, regional, national, interest groups i.e., christian, altruistic, low comp, natural minded, etc).
“Normally, you would be able to attend all OB appointments with your surrogate, but Covid made things a little trickier for us. We were unable to attend the transfer, which was sad, but I was able to go to a fair amount of the appointments. My husband unfortunately wasn’t allowed to attend any. We both were allowed to be in the room for the birth though and that was the most important thing to us.”
The experience of having a surrogate
Jessie says had she not been able to carry her first child that she feels surrogacy would have been harder on her. She feels so fortunate that she was able to experience pregnancy once.
“I had already gotten to a place mentally and emotionally where I knew the only way to get my daughter here safely was by having someone else carry her. I wasn’t ever triggered per se by seeing a pregnant belly because I knew she was safer inside our surrogate. I had so much PTSD and trauma from my first pregnancy as well that looking at another pregnant person never made me think “oh man I wish that was me again” if that makes sense. I did/do still deal with mourning though over how pregnancy played out for me and that I was unable to carry safely again. I also find myself spiraling occasionally thinking about how much it cost us to get our children here versus someone who could just have them themselves naturally. It’s been a massive financial burden/sacrifice for my husband and I (but oh so very worth it).”
The Financial Cost of Surrogacy
When looking into surrogacy, Jessie tells me you can ballpark around everything costing $100,000. There are many factors involved that play into whether that number is more or less depending on if you’ve already gone through IVF and have embryos. Much like IVF, there are some grants available for surrogacy, though much less common.
“The ways to bring the cost down for surrogacy would be to do an “independent journey” like we did where you don’t use an agency. You can also use a surrogate (whether it’s a friend, family member or even a stranger) who does not want to be compensated or wants very little. Medical bills will bring the cost up or down significantly depending on insurance plans and same with your legal fees as those will vary based on the surrogacy laws in your state.”
Defending her Decision
While Jessie says it was empowering to make the decision to utilize a surrogate to do what was best for her health and for her family, it’s been frustrating to constantly feel like she still needs to defend her decision to other people and even some doctors.
Whether it was …
“Aren’t you worried about having another child when you’re so sick?”
“Why don’t you guys just adopt??”
“Aren’t you worried the surrogate will want to keep the baby?”
“Aren’t you worried she won’t know you/you won’t be bonded to her??”
“Just one kid is great you should just be ok with having just the one”
etc …
“I know most of the time these comments don’t come from a place of mal-intent, and I try to use them as an opportunity to educate if it feels productive, but everyone is different what they’re open to accepting in their heart and their mind. In my mind, the girls are going to know the stories of how they came to be eventually, and hopefully they’ll see how wanted and loved they were. How unbelievably hard they were fought for. And how many people played a part in bringing them into this world.”
Managing IBD and Motherhood
Prior to looking into surrogacy, Jessie and her husband had to discuss at length if they would be able to handle a second child with her IBD. They also had to loop in their families knowing they would need their help when they couldn’t manage everything on our own.
“My husband and I say all the time, in all seriousness, that my illness has become a third child in a sense. There’s not a day, hardly an hour, that I don’t have to think about my Crohn’s or manage something with it in some way. It’s a difficult balancing act every day when I wake up trying to prioritize who needs the most at what moment (my kids, myself, or even my husband). I deal with a lot of guilt and grief with that. That I’m not the mom or wife I want to be … that I’m not able to give everyone what they need and deserve.”
Jessie often thinks of the oxygen mask analogy and says as an IBD mom it’s imperative to make sure her proverbial mask is on and secured first before she can help anyone else, which is very hard to do as a mother.
Meeting Millie the Day She Was Born
It makes Jessie emotional to think about what it was like to walk into the hospital with her husband and know they were about to meet their daughter. They were able to be in the delivery room when Millie came into the world.
“I had an overwhelming sense of gratitude looking at our surrogate knowing what SHE went through and had sacrificed to get her here. All the anxiety I had been suppressing for months and months from having someone else carry her, to giving up all control, to doing it in the middle of the pandemic, to being so scared something would go wrong like it so often had for us in the past. It just all came pouring out of me uncontrollably as she was pushing. The moment she was placed in my arms it just felt like a lightning bolt connecting us. I felt bonded to her instantaneously. She was mine and I was hers and there was nothing on this earth I wouldn’t do to protect her.”
Jessie knew from the start of this journey that her surrogate would be a lifelong friend. Their families grew close through the process, and they live nearby one another. She says she’ll always hold a deep place in her heart for her and is incredibly grateful to be a family of four.
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.
August 1, 2021. 6 years post-surgery.
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.
3 weeks post-op, laughing through the pain during engagement photos.
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.
Let’s face it, when you live with IBD, packing for a hospital stay isn’t anything new. We know what we need and what we won’t. We know the necessities and even with a C-section recovery, it’s nice to have a positive and happy reason to be going to the hospital. But this time around, my hospital bag for delivering my son this week has an addition. Since I’m participating in the Pregnancy in Inflammatory Bowel Disease and Neonatal Outcomes (PIANO) study, my son and I will be getting our blood drawn the day he’s born and cord blood will also be taken.
The blood sample kit includes an ice pack and vials that are labeled “Mom”, “Cord”, and “Baby”. This will measure the level of biologic drug in our bodies…and the coolest part is, I’ll get to know the results, while also contributing to research for current and future IBD moms on biologics. I can’t wait to find out how much Humira is found in our blood samples. The most ironic part of all? My scheduled C-section just happened to land on the same day as my loading dose anniversary of Humira… 13 years ago! Little did I know when I was injecting myself for the first time how my life would evolve to what it is today.
Background on the PIANO study
PIANO is an observational, multicenter study launched in January 2007 with the main focus to look at whether there is an increased risk for worsened maternal and fetal outcomes when a woman takes a biologic or thiopurine (a type of immunomodulator) therapy during pregnancy. Prior to this, lack of safety data has led many women to discontinue their therapy during pregnancy, which can lead to health repercussions to both mother and child.
On delivery day, it will be a team effort. My OBGYN and the nurses will ensure everything is taken care of and then one of my family members will make a stop at FedEx (within 3 days) to ensure our blood samples make their way safely from Missouri to California.
What else is packed in my bag?
This c-section will be my fourth abdominal surgery in less than 6 years, all on the same incision. Knowing what to pack so I can heal and be comfortable is almost second nature at this point.
Comfy nightgowns with buttons so I can easily breastfeed and keep my incision waistband-free
Two robes
Nursing bras
Cozy socks
Frida Mom Boy Short Disposable Postpartum underwear (not a fan of those mesh panties from the hospital!), I’ve also heard Depends are great!
Slip on shoes/flip flops (for the shower and walking the halls)
5 masks (planning to be admitted 4 nights, 5 days) and hand sanitizer
Nipple cream (I prefer the Motherlove brand)
High-waisted joggers and a nursing top
Summer dress for the drive home
Phone charger
Non-perishable snacks
Toiletries
Outfits and swaddles for baby boy
Newborn pacifiers
The results from the blood draws are expected about a month after delivery. I’ll be sure to share an update on my Instagram page (@natalieannhayden). Interested in enrolling in the PIANO study? Please call 415-885-3734 or email PIANO@ucsf.edu.
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.”
A patient who wishes to remain anonymous 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 L. 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.
She’s an IBD mom who plays touch football and touch rugby in Australia (think rugby—for those in the United States, in touch rugby she kicks the ball). Diagnosed with Crohn’s disease five years ago, she’s thrilled to have reached remission. Bec Simson is a 33-year-old IBD warrior adamant about not letting anything stop her from pursuing what she hopes to achieve. Even though her disease has sidelined her through the years, motherhood and staying active through sports is a reminder of all she’s capable of.
“Some weeks it can be hard to find the time and energy to exercise. I play touch football competitively and socially– it’s like rugby but without the tackling. I play three times a week and then on the weekends I like to do my own fitness to keep up my strength, speed, and agility. I enjoy playing touch football because I use it to catch up with my friends – seeing my mates gives me the motivation to get up off the couch and exercise.”
Getting up off the couch and having not only the motivation to move, but also the energy, can be especially challenging when you live with IBD. Bec’s biggest challenge is trying to juggle work as a teacher, her athletic commitments, and life with her son Jackson, while also trying to find time to rest in between.
“Being on immune suppressants and having a toddler who is almost 2.5 has been hard because he brings home many illnesses from daycare which I usually end up getting as well. Some days I am so rundown I just don’t have the energy to keep up with him, but I wouldn’t have it any other way. Jackson always knows how to make me smile.”
Reflecting on pregnancy with Crohn’s
Bec had a rough go of it with her pregnancy. Her Crohn’s flared multiple times throughout, resulting in three visits to the hospital due to severe vomiting and diarrhea. She was put on a course of steroids for each flare, which led to her son growing much faster and bigger than expected.
“Ultimately, I had to be induced two weeks early due to Jackson’s size. After 16 hours of labor, I had an emergency c-section. My incision from my c-section ended up bursting open while I was recovering in the hospital after delivery. An ultrasound showed my bowel was so inflamed, it had pushed through my internal stiches and formed a hernia that was sticking out of my stomach. I was rushed to emergency surgery that same day.”
Fast forward to present day and Bec is in remission. Her colonoscopy last month showed no signs of inflammation or ulcers. She credits this to Stelara (Ustekinumab), which she started this past October. So far, the biologic has helped control her disease and improve her quality of life.
Down the road, if she’s still in remission, Bec is hopeful she’ll be able to have another child.
The benefit of a supportive partner
Bec is grateful for her supportive partner, Nick, who happens to play in the AFL (Australian Football). Not only is he empathetic about her battle with Crohn’s, but serves as someone who keeps her accountable with her workouts and is also passionate about staying in shape.
“We motivate one another to complete work outs and then reward ourselves with food and drink later! When I was younger, I used to overdo my training and push my body to its limit. I became burnt out, rundown, sick, and injured. My main piece of advice for the IBD community is to listen to your body and don’t be afraid to stop and take a break. Rest is just as important as training.”
Managing IBD and competitive sports
Bec says her Crohn’s disease often makes her anxious while she’s on the field.
“I had our State of Origin for ‘Touch Rugby League’ which attracted quite an audience and it was also being live streamed for everyone to see. I was extremely anxious leading into that tournament because I was worried about pooping my pants in the middle of the game and it leaking through my bike pants! I took some Imodium before my game, so thankfully that didn’t happen! However, I felt like I couldn’t play to my potential because I wasn’t feeling my best.”
While she feels fortunate to be in remission, she’s also realistic. She knows the symptoms and flares could return at any moment—and that it’s not a matter of if, but when.
“Sometimes I can be hard on myself when it comes to sport, but I just try and remind myself that I’m a 33-year-old mum with a chronic illness and I am grateful I’m still able to run around the touch field at my age. I can’t change things out of my control, all I can do is just go out there and give it my best shot.”
Follow Bec’s journey on Instagram: becs_IBD_journey
For IBD mom, Suzy Burnett, reflecting on the past year and half of living through the COVID-19 pandemic causes her to feel flooded with emotions. She knew having three children under the age of five at age 41, while dealing with the ebbs and flows of Crohn’s disease, would be challenging. She delivered her son, Guy, just as COVID cases were starting to soar. Now, she’s able to look back on how her family adapted and thrived, despite the difficult circumstances of living through a global pandemic with a chronic illness. I’ll let her take it away…
Like many families, we’ve worn masks, stayed at home, literally have seen no one except our wonderful neighbors, and made sacrifices to ensure the safety of ourselves and others. We made the difficult decision not to send our 5-year-old to kindergarten, rather, enroll her in virtual 4k from the confines of our home. Our 3-year-old also didn’t attend preschool a few mornings a week like we had originally planned. We have noticed the lack of socialization has impacted her the most. Our 15-month-old is just now meeting family and friends for the first time. He takes stranger danger to a whole new level, but we know he’ll warm up in due time.
My husband, like so many others, started working from home. What was once thought to be a temporary safety precaution, has become a permanent situation. He continues to work in a room without doors while the wee ones race around playing superheroes. Noise canceling headphones have become a lifesaver. All of us together at home, day after day, month after month. Our bond has grown deeper, and our Burnett Party of 5 has survived. I can honestly say we live fuller, laugh harder, hold each other longer, and love deeper.
Dealing with the lifting of the mask mandate
Just as we were beginning to get used to our personal version of Groundhog’s Day, the mask mandate was lifted. This is a huge milestone, but with that brings excitement along with anxiety. My husband and I are both vaccinated, but our 3 young children will have to continue to wait their turn. To say we’re trepidatious about starting to acclimate back into society is an understatement. We’ve been in our little bubble on Welcome Drive for more than a year. I don’t think things will ever get back to “normal,” per say, but we’re looking forward to what our “new normal” will be. It’s a new beginning, a fresh start to be more present, and we have the opportunity to give precedence to things that matter most in life. Things will be a little different than before, and we will always remember and carry the weight that was and will forever be COVID.
We will continue to have our groceries delivered as well as basic necessities, because it’s unclear who is vaccinated, and I’m not going to rely on the honor system of strangers to keep my kiddos safe. However, I am beyond the moon ecstatic that our girlies will both be doing outdoor soccer and playdates with other vaccinated families. My husband will continue to work from home, but this is a change we welcome and greatly appreciate. It has given us time as a family we never knew we were missing. Our oldest daughter, Lucy, will finally be attending kindergarten…….wait for it….IN PERSON. I am so proud of her. She’s sacrificed so much these past several months. She’s handled herself with grace and class far beyond her years. We’re planning our first family trip in over two years, and I am completely overwhelmed at the mere thought of the happiness this will bring.
Coming out stronger than before
It has been months of peaks and valleys, but our mountain remains strong. On top of enduring the pandemic, we lost our family cat, Miles. He was a furry friend to our littles when they couldn’t see their own friends. My dear Grandma Connors was called amongst the angels, and now she protects us from above. I also recently almost lost my sister due to a post birth hemorrhage, but now she rests safely at home with her baby boy. And I am recovering from a nasty bout of C.difficile. Yes, the one time I left the house I picked up a bacteria from the hospital. Through it all though, we’re stronger than ever before because of our strong family foundation.
My point in saying all of this is that we all go through our own struggles. Life is so unexpected, and often we can’t choose what we’re dealt. We can, however, choose how we handle the storm. We’re so grateful for our health, happiness, and each day we’re given. Take NOTHING for granted because every day is a gift. Everyone has been impacted one way or another these past few years, and now it’s up to you to see where your ship will go as you navigate life with IBD and in general. As the tides of the ocean swiftly change, so will the moments in life. Savor the moments.
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.”
Rebecca waiting in the car (thanks to COVID) while her husband receives his Remicade infusion.
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.
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