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.
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.
Breastfeeding is a labor of love. Like many women, it doesn’t come easy for me. As an IBD mom who already fears passing my disease down to my kids, there’s added pressure and stress. In the United States, an estimated 1.6 million people have Crohn’s disease or ulcerative colitis. Of those, roughly half are women, and most will carry the diagnosis during childbearing years, throughout all phases of family planning: trying to conceive, pregnancy and postpartum. As an IBD mom of three going through postpartum right now, one of my biggest stresses and focuses revolves around breastfeeding.
-What if I take this pain medicine for my Crohn’s? Will I need to supplement?
-What if I have a postpartum flare, will my milk supply go away?
-What will happen if I’m hospitalized?
-Will I flare once I stop breastfeeding and my hormones regulate?
-If I stop too soon, will my child end up having an increased risk of IBD?
…the list goes on…
The journey to motherhood for women with IBD requires several complex decisions and coordination among specialty care teams from the stage of family planning until postpartum and beyond. The IBD Parenthood Project aims to address common misperceptions and fears women with IBD and their providers experience throughout all phases of family planning (conception, pregnancy and after delivery). By eliminating the gray area and serving as the gold-standard for navigating pregnancy and motherhood with IBD, our patient community can rely on this support that helps uncomplicate the journey.
This beneficial and much-needed initiative was created by gastroenterologists (GIs), maternal-fetal medicine (MFM) subspecialists, and patients and is led by the American Gastroenterological Association (AGA) with support from the Society for Maternal-Fetal Medicine, the Crohn’s & Colitis Foundation, and patient support network, Girls With Guts. The IBD Parenthood Project launched in January 2019, just as I delivered my second child. To this day, I feel so grateful to have this information and confidence in my choice to become a mom even though I’ve lived with Crohn’s disease for more than 16 years. It’s empowering to know despite the unpredictability of IBD, this initiative allowed me to feel like I’m in the driver’s seat when it came to creating my family and knowing the choices I’ve made were and are supported by science and medical facts.
To the random lady in the church elevator who asked me if I was breastfeeding my son Reid when he was a month old, and I was a first-time mom.
To the lactation consultant after I delivered my daughter Sophia, who told me since I have Crohn’s, it’s imperative her gut only be lined with breastmilk.
To the nurse coaching me nonchalantly about breastfeeding my son Connor and underestimating the challenges it can present…who I later found out “only” breastfed one of her children for 2 weeks…
To anyone who is struggling with the physical, emotional, and mental stress of something that sounds “easy” and “natural” — simply feeding your baby — I get how complex and taxing it is. I’m in the thick of it now with my son who was born July 14. So far, he’s only had breastmilk…both from nursing and by a bottle. But it’s not pretty for me. The engorgement, the round the clock pumping, the soaked t-shirts, the night sweats, the discomfort to even wear a bra or sleep on my side. It weighs on me. There’s the outside pressure and the pressure I put on myself to keep going, even though I don’t enjoy it. It’s super rewarding to see Connor thriving and making gains all because of me. But there’s also a lot of stress to be a child’s only source of food, especially as an IBD mom.
Different feeding approaches with all my babies
With my firstborn in 2017, I wasn’t well-versed on the benefits of breastfeeding and feared not only further exposure to my biologic, but also flaring, so I only breastfed my son for 3 days in the hospital so he could get colostrum. By 2019, I was well-versed on the positive impact and the safety profile associated with breastfeeding while on a biologic, so I breastfed my daughter until she was 6 months old. I had hopes of making it a full year, but unfortunately my milk supply disappeared once my menstrual cycle started back up. This time around, I felt the anxiety about having to breastfeed creep up when I was only a few months pregnant. Between research showing that breastfed babies have a lower risk of IBD, coupled with antibodies from the COVID-19 vaccine, I feel the need to do all I can to protect my son from the what if, even if it feels mentally, physically, and emotionally taxing each day.
The Fourth Trimester has several challenges for women that often go undiscussed. However you choose to feed your child is your business and should be based on what is best for you and your family. This is a judgement free zone. I’ve fed my three babies differently. But the pressure mounts when you yourself have an illness with no cure and feel as though breastfeeding can help improve your odds of not passing it on to your offspring. In my mind, down the road, I don’t want to ever think I coulda, shoulda, woulda done anything differently when it comes to protecting my offspring from IBD.
The IBD Parenthood Project tackles some of the common questions related to breastfeeding as an IBD mom. There’s a downloadable toolkit that features patient-friendly information and easy-to-digest lists of key questions to ask your doctor as you’re thinking of becoming pregnant and beyond.
What I Want Fellow IBD Moms to Know
Navigating motherhood while taking on IBD is overwhelming. With proper planning, care and coordination among treating healthcare providers, women with IBD can have healthy pregnancies and healthy babies—and breastfeed if they choose to do so. For me, breastfeeding provides a sense of normalcy and gives me a renewed sense of love for what my body is capable of, despite having Crohn’s disease. Give yourself credit for going through pregnancy with IBD, delivering a baby, and continuing to nourish your little one with your body when they are in the real world. The blood, sweat, and tears are inevitable.
Just this week I experienced awful abdominal pain. The kind of pain where you can barely breathe, your hands start to tingle, and you go back and forth about whether a trip to the emergency room is imminent. As I rocked myself on the toilet and heard my newborn crying in the bassinet my mind raced. My 4-year-old stood before me. I could see the fear in his eyes. My immediate thought was—what can I take to get this pain under control—will it affect my ability to breastfeed? In that moment, the pressure to think outside of myself and manage my disease felt suffocating.
There comes a point when the mental health and wellbeing of the mother must come first so she is able to be the best version of herself for her kids. If breastfeeding is taking away from the joy you could be experiencing or the connection you are longing for with your child, don’t feel guilty. Whether your child is exclusively breastfed, or formula fed, or receives a little of both, they will thrive. I’m personally all about flexible feeding. A little nursing, some pumping, and some formula has worked best for me. When the time comes, and I need a break or feel too consumed by being the sole provider of nourishment for Connor, I’ll feel confident in supplementing with formula. There’s no shame in my game and there shouldn’t be in yours, either. Take advantage of invaluable resources like the IBD Parenthood Project and be confident in each of your personal health decisions when it comes to whether or not you want a family and how you choose to feed your baby.
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”
“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.
Tips for Surgery: Before and After
Take a before photo. The day before my surgery, I took a photo of myself standing in front of the bathroom mirror in my bra and underwear so that I could remember what my body looked like before it had scars. I took the picture for myself and have never shared it. When I look at the picture now, I see a girl with sadness in her eyes and a longing for days without pain. I see a girl who is petrified of what could be and praying for relief. I see a thin, untarnished body on the outside, but one that is very sick on the inside. I highly recommend you take a photo of yourself prior to surgery so you can capture that moment. One day you’ll look back on that time and be able to see how far you’ve come. You won’t think of your scars in a negative way, but rather a reminder of all you’ve overcome. I don’t even notice my scars when I look in the mirror now.
Communicate with your surgeon. If your surgery isn’t an emergency and you have some time to talk with your surgeon, make sure you do. Talk with your care team about what the surgery will entail—how many inches of intestine will be removed, if an ostomy is a possibility, where they will do incisions, etc. This will help you mentally prepare for what’s to come. My surgeon came into my hospital room prior to my bowel resection and asked me where I would want the incisions. We knew I would have the laparoscopic incisions, but we discussed a horizontal vs. vertical incision as well. I said I wanted the incision to be as low as possible—he told me he would do a “c-section incision” …which worked out wonderfully for me. I know of many people who have had a couple inches of intestine removed and have a large vertical scar (I had 18 inches taken) and that type of incision was not necessary.
Once you’ve had surgery push yourself to get up and get moving. Don’t overdo it, but every step, every movement will help you heal. Before you know it, you’ll be able to bend down and tie your shoes, walk a little further, and stand a little taller. After my surgery it was a struggle to walk around my family room, then before I knew it, I was walking outside…each day making it to one house further around the block. Before I knew it, I was able to take long walks. When you’re laughing, coughing, sneezing, or driving, have a small pillow nearby to hold against your incision, this will alleviate a lot of the pain. The first two weeks is the hardest. Once you hit the 2-week mark, you’ll feel a ton better. You’ll be able to drive and get around with minimal pain. Just hold on to that thought those initial days when it’s emotionally and physically pretty brutal. I remember crying my first night at home because I was so overwhelmed by the pain and my inability to get out of my own bed. At the time a family member was battling ALS. Her fight and knowing that her health was deteriorating daily, while mine was improving with each hour that passed, gave me perspective and brought me back to earth.
Trust in your care team. Once you have surgery, then the priority is to determine how managing your IBD will look moving forward. I, like many, had this false sense of security after surgery that I felt so great, I wouldn’t need to go back on my biologic…or any medicine for that matter. After a lot of tears and discussion, I followed my GI’s recommendation to re-start Humira and add a bunch of vitamins and supplements to the mix (Vitamin D, Calcium, Folic Acid, and a prescription prenatal). I give my GI a lot of credit for being proactive and having a “come to Jesus” talk with me, if you will. She warned me my Crohn’s disease is aggressive and by going med-free, my risk of being back on the operating table 3-5 years down the road would go up exponentially. Six years later, I’m so glad I listened.
Be patient with your healing. I’ve had three C-sections and bowel resection surgery, and the recovery is very different. I try to explain this to women who come to me with questions wondering about the two. With a C-section you have incisional pain/burning, but with an IBD-related surgery you also have to heal from the inside, too. Organs are cut, removed, and reattached. Your digestion needs to recalibrate. It’s a lot more intense of a recovery than a C-section (which I’m going through right now). Be patient with your body. Ease back into normal activities. After my bowel resection surgery, it took me nearly 8 weeks to return to work full-time at my desk job. Prior to returning to the office, I worked half days for two weeks from home because it took time to heal enough to sit upright in a chair. As your digestion re-works itself, it’s not unusual to have an accident or not be able to ‘hold it’ the same as you could prior. For me, this was temporary. But in those initial weeks and months, it’s a good idea to have a change of clothes in your car or packed with you and to be mindful of where the nearest bathroom is. I had one accident during my recovery—luckily, I was home alone (working a half day), it was mortifying, and I was by myself. Don’t try and rush back to normalcy, give yourself time to heal mentally, physically, and emotionally.
If you find out you need surgery—it’s understandable to be upset. But also give yourself a chance to think of all that could be possible. Try and focus on the promise of how surgery could help you get into remission or at least help you in having more “feel good” days. It’s normal to grieve and to be tearful and fearful, but I hope you find comfort in knowing once you wake up from surgery, you will be on the road to a recovery that paves the way for feeling empowered against your illness. And from that point forward you won’t be as scared of future surgeries because you’ll have a better idea of what to expect and a better understanding of how it feels to be well after being in pain for so long.
After a lot of thought and consideration, I decided to hold off on getting my COVID-19 vaccines until after I delivered my son. Before we dig deeper into this topic, I want to clarify that this was solely my choice, everyone needs to do what they are most comfortable with. Since the pandemic began, unprecedented pressure and stress has been placed on pregnant and lactating women to make one decision or another. For me, as a stay-at-home mom, who continued to keep a low profile while pregnant, I felt more at ease waiting to get my vaccines until after my son was out of my body. My care team made up of a maternal fetal medicine doctor, OB, and gastroenterologist all supported my choice to wait.
My main reasoning was limiting the variables of exposure. All my kids were exposed to Humira while in utero. While there are long term studies that show the safety and efficacy of biologics in pregnancy, you never know. If down the road my son had any health complications or issues, I didn’t want to have to grapple with whether my biologic or a vaccine contributed or were to blame. As an IBD mom, we deal with enough guilt as it is.
So, I chose to wait. Anxiously. Patiently. Luckily, I delivered my third child, Connor Christopher, July 14th, and did not encounter any COVID-19 scares while pregnant. Once I was home from the hospital following my C-section, I talked with my gastroenterologist and OB about getting my first COVID vaccine and scheduled an appointment at Walgreens ASAP.
Getting the first jab
Wednesday, July 21, I finally got my first dose! A little late to the party, but I’m currently exclusively breastfeeding (and pumping), and I’m hopeful that once I’m fully vaccinated (two weeks after my second dose in August), my son will receive antibodies from the vaccine that way. It felt a bit surreal to finally be at a point where I felt comfortable with my personal choice to get the vaccine.
According to the CDC, since January 2020, there have been 34 million cases and 607,000 deaths. As of July 21st, 161.9 million people are fully vaccinated—that’s 48.8% of the total population, or 57.1% of the population older than age 12. Virus variants threaten new outbreaks among the unvaccinated.
Much like making decisions to manage IBD, it’s imperative our community looks at the benefits vs. the risks of getting the vaccine.
Words from leading medical experts in the IBD community
This past week Dr. David Rubin, MD, Professor of Medicine, University of Chicago presented, “Updates on COVID-19 for Patients with Inflammatory Bowel Disease”.
“Everyone needs to be vaccinated, this includes pregnant women and new moms. The Delta Variant is VERY contagious. The data in IBD is reassuring when it comes to immune responsiveness compared to the general population, especially with the two dose mRNA vaccines. Antibodies against many things are transmitted in colostrum, and that may be the anti-SARS-CoV-2 spike antibodies too, which may provide protection to the baby. It’s definitely NOT dangerous to breastfeed after vaccination.”
Speaking of the Delta Variant, according to Dr. Rubin’s presentation as well as guidance from the CDC, “Delta was 1% of COVID-19 cases during the week of April 10th. By the week of July 3rd, Delta is estimated to account for 57% of new COVID-19 cases. Within a matter of 12 weeks of being introduced to the US population, it became the dominant variant here.
Dr. Uma Mahadevan, MD, University of California San Francisco agrees, saying given the ongoing crisis with COVID-19, all eligible people should get vaccinated.
“Breastfeeding mothers can get vaccinated per CDC guidelines and there is data that the antibody from the vaccine crosses to the infant via breastmilk, possibly providing them with protection as well! For many infants of moms with IBD, they have detectable levels of biologic agents in their blood for the first 6 months of life. Having antibody against SARS-Co-V-2 may provide them some protection against getting ill if exposed to the virus.”
Dr. Meenakshi Bewtra, MD, MPH, PhD, Penn Medicine, has IBD herself and has been a vocal advocate for our patient community since the start of the pandemic. She implores everyone to get the vaccine, immediately.
“Don’t wait. In fact, I, every doctor I know, American College of Gastroenterology, and Maternal Fetal Medicine recommend getting the COVID-19 vaccine while you are pregnant. Why? Because we’ve seen what happens to pregnant women who get COVID. There are women who got the vaccine in trials; there were women who got vaccinated while pregnant (>10,000 at this point)—we have a lot of data. The evidence is crystal clear. The same holds for getting it while breastfeeding. COVID is real, it’s out there; you can get sick and die; you can transit it to your infant or others in your house. There is absolutely no reason why anyone should not be getting vaccinated unless you know you have an allergy to something in the vaccines themselves. Your protective antibodies can pass to the infant.”
COVID-19 in the IBD Community and Vaccine Response
Thanks to the SECURE-IBD database, we have more guidance about how those of us with Crohn’s and ulcerative colitis have responded and continue to respond to not only COVID, but the vaccine. People with IBD do not have an increased risk of getting it. Aminosalicylates, biologics, and immunomodulators show no increased risk of severe COVID- 19. Steroids are associated with worse outcomes. And biologic therapy is associated with decreased risk of severe COVID-19 outcomes.
One of the main concerns many of us in the chronic illness community on immunosuppressive drugs have wondered about is the efficacy of the vaccines in our body. Good news—a recent study of 246 patients with IBD who received both doses of the vaccine showed similar adverse events as in the general population. Sore arm, headache, and fatigue are the most common adverse effects of the vaccine. All I had after my first Pfizer vaccine was a sore arm. More importantly, the study showed no increase in IBD flares.
The Prevent-COVID study shows even more promising data with more than 1,700 participants with IBD. Click here to see results of the study—everything from rates of vaccine side effects to lab titers three months out.
As of now, there’s no recommendation or approval regarding a booster vaccine. Pfizer announced that their clinical trial data showed that a third shot may increase antibody levels, but nothing has been published yet. Without more research, it’s unclear if an increase in antibody levels will provide greater protection from the virus than two doses.
Get Involved in COVID-19 Vaccine studies
University of Chicago Inflammatory Bowel Disease Center COVID-19 Vaccine in IBD Study
This study is analyzing the durability, safety, and efficacy of COVID-19 vaccines in patients with IBD, If you are interested in participating in the study (whether you have already been vaccinated or not) please email: firstname.lastname@example.org.
Prevent COVID Research Study
If you are 12 to 17 and have received your first COVID-19 vaccine in the last 90 days, you may be able to take part in PREVENT COVID, a research study to learn about the vaccine experiences of people with IBD. Click here to learn more.
The purpose of this research being conducted at Cedars-Sinai is to understand the effects of vaccination against COVID-19 in people with IBD. To achieve this goal, a national and local group of adults with IBD who are eligible to receive any available vaccine against COVID-19 are being recruited. Within this group we will evaluate the antibody levels of the body’s response to the vaccine. Questions about the study? Contact the CORALE-V IBD Research Team at Cedars-Sinai at email@example.com or call 310-423-5643.
Washington University in St. Louis: COVID-19 Vaccine Response in Patients with Autoimmune Disease
School of Medicine researchers are leading a clinical trial to evaluate the safety and effectiveness of COVID-19 vaccines in people taking immunosuppressive drugs. Such drugs are prescribed to treat autoimmune diseases, including arthritis, Crohn’s disease, and psoriasis. Researchers will enroll up to 500 adults ages 18 and older in the St. Louis region. They are recruiting health-care workers at the School of Medicine and patients seen in Washington University outpatient clinics. Eligible patients who have preregistered for the COVID-19 vaccine will be contacted to assess their interest in being recruited into the study. For information about participating in the trial, email firstname.lastname@example.org, or contact either Alia El-Qunni at 314-249-1151 or Lily McMorrow at 314-280-3894.
Use your smartphone to tell the CDC about any side effects after getting the COVID-19 vaccine. The tool uses text messaging and web surveys to provide personalized health check-ins after you receive a COVID-19 vaccine. Depending on your responses, someone from the CDC may call to check on you. Participation is voluntary and you can opt out at any time. Sign up at: www.vsafe.cdc.gov.
I wish when I was diagnosed with Crohn’s in July 2005 that I would have had a look into the future to know that the same body that has gone to war with me time and time again would also bring three miracles into the world.
Wednesday, July 14, 2021 my family grew to five and I became an IBD mom to three kids, four and under. Our latest addition, Connor Christopher, completes our crew.
On the day of my scheduled C-section and Connor’s birth, I felt overwhelmed with emotions. So many thoughts and feelings came to mind—from knowing I would never be pregnant again to recognizing that from this point forward I would never feel the deep remission I experience when I carry a life inside of me.
There are so many sharp contrasts in what pregnancy and deliveries have meant in comparison to life with Crohn’s.
The unpredictable nature of Crohn’s but having three scheduled C-sections all go to plan.
The way it feels to head to the hospital for a good reason.
The fact that my Crohn’s comes up as an aside when conversing with medical professionals and my pregnancies and being a mom comes first as my “identity.”
The perspective and strength IBD has given me when it comes to coping with painful pregnancy-related issues like SI Joint Dysfunction, Symphysis pubis dysfunction, acid reflux that required prescription medication, and C-section recoveries.
The incredible pride and joy I feel knowing that the girl who found out she had a debilitating lifelong disease 16 July’s ago, has carried three pregnancies to term and has a family of five to show for it.
If you’re like me and have dreamed of one day being a mom, explore all options to get there and don’t let your IBD hold you back. You are not less than because of your chronic illness, you are more capable than you think. Your body may surprise you in ways you could never imagine. To me–my children are proof of all that’s possible despite chronic illness.
When I was 21 and found out I had Crohn’s disease, one of my greatest fears was the uncertainty of what my future would look like personally and professionally. While the unknown was daunting and overwhelming, I never really allowed myself to think of not becoming a mom because of my disease. Instead, I shifted my focus to recognizing that getting there may take some detours and careful planning.
Thank you for all the well wishes for my family over the years. Your kind words, interest, and prayers, have meant the world to us and helped me to realize that even though I’m an “IBD” mom… I’m so much more.
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
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
Outfits and swaddles for baby boy
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.
July has been my least favorite month for the last 16 years of my life. It’s the month I was diagnosed with Crohn’s disease. The month I had an abscess the size of a tennis ball in my small intestine. The month I was put on a biologic medication. The month I had a bowel obstruction that led to bowel resection surgery. You get the picture. But now, it’s about to be the month I give birth to my third child. Baby boy is about to flip the script on a month that previously brought dread. Instead, I can focus on celebrating his new life and all his birthdays and milestones for years to come.
As a woman with IBD, motherhood has continually provided me with reminders of all my body is capable of despite my chronic illness. It’s shown me what once may have seemed unattainable, is possible. Motherhood is a constant reminder that my body hasn’t always been at odds with me. That despite the challenges and the pain all these years, it still afforded me the opportunity to carry healthy babies to term. Rather than feeling like my body is the enemy, motherhood has made me think of my body as my ally. We’ll have our ups and downs forever, but for 27-plus months it’s been a safe haven for my children. I’ve enjoyed flawless pregnancies and deep remission. It’s given me a chance to feel like a “typical healthy” woman, if only for a moment. Pregnancy has felt like a security blanket wrapped around me, and is soon to be no more. With that, comes an immense amount of gratitude, as well as anxiety, as from this point forward it’s just me and my Crohn’s…no buffer.
It feels weird going into this month of July not worrying about what could be, but rather being excited about what’s to come. When I was younger and prior to getting married, I avoided making plans in the month of July—especially life changing ones! My wedding, vacations, etc. were all coordinated around this month because I didn’t trust the way my body could blindside me.
Preparing for the shift in health
While I am ready for my son to be here and over the discomforts of pregnancy, a part of me is sad that I’ll never feel this well again. Within days of delivering Reid and Sophia, the gnawing abdominal pain associated with IBD crept back into my life before I even had a chance to bring my babies home. I expect the same will happen this time. While it was discouraging then and will make me feel the same now, I’m hopeful the shift in hormones won’t throw me into a postpartum flare and that I’ll find comfort in knowing from this point forward, every medication, every procedure, and every hospitalization will be done without a life growing inside of me.
Over these last nine months I’ve enjoyed eating popcorn with my kids for the first time, drinking a cup of coffee without a need to use the bathroom right after, and nearly 40 weeks of baby flutters and kicks instead of pain. It’s been a great run. I hope my experiences through family planning, conception, pregnancy, and motherhood provide you with an understanding that IBD doesn’t mean you can’t have a family. While many sadly struggle with infertility, complications, or not physically being well enough to carry a baby, it’s very possible that you can. Whether it’s stories like mine or the opposite, remember each of our journeys is unique. Don’t base your experience and capabilities on someone else, but when something or someone inspires or empowers you to go after what you dream of, hold on to that.
Baby boy will not only complete our family but serve as a constant reminder of all that is possible. While my Crohn’s has brought a great deal of heartache it’s also allowed me to gain a unique perspective and to never take life’s miracles and triumphs for granted.
Starting on a biologic and finding one that helps manage your IBD can be challenging physically, mentally, and emotionally. Nearly 13 years ago (July 14, 2008) I sat in my GI’s office like a fish out of water petrified of injecting myself with four Humira shots. I remember how daunting and overwhelming taking the plunge into life on a biologic was and know I would have given anything to hear firsthand experiences from fellow IBD patients. This inspired me to launch a special series on Lights, Camera, Crohn’s hearing firsthand accounts from people like you and me, living life on biologics. So far, I’ve covered Remicade and Entyvio.
This week—we tackle Stelara (ustekinumab). Stelara is categorized as a human interleukin-12 and -23 antagonist. Patients receive a one-hour loading dose infusion and follow up with an injection every 8 weeks. As you’ll read, some patients receive their injection every 6 weeks, others every 4. Stelara is indicated for Crohn’s disease, ulcerative colitis, severe plaque psoriasis, and active psoriatic arthritis. As a biologic, it joined the IBD game in September 2016 for Crohn’s disease and October 2019 for Ulcerative Colitis.
“I’ve been on Stelara for almost 5 years. I started taking it right when the FDA approved it for Crohn’s disease. I have only good things to say, because it’s keeping me in remission. It’s easy to administer and doesn’t burn like Humira used to (prior to the Citrate-free formula). I stayed on Stelara throughout both my pregnancies. My GI had me skip my last dose both times I was pregnant, and I re-started my injections once the babies were here,” said Ashley Miller.
Patient Advocate and Co-Founder of IBD Desis, Tina Aswani Omprakash, joined a clinical trial for Stelara to treat her Crohn’s disease. She says it took months to work, but it was the first time in a decade of having IBD and enduring more than 20 surgeries that she was able to achieve remission.
“At that juncture, I thought my life would always be in shambles and that I would never be able to rise from the ashes of this disease. But here I am today pursuing advocacy work and going to graduate school part-time. Modern medicine is nothing short of a miracle and I can’t help but count my blessings every single day to have been given another chance at life again. Thank you, Stelara, for making me whole again.”
Click here to learn more about Tina’s clinical trial experience with Stelara.
Making the Switch
Lauren Gregory is an IBD mom and a pediatric hospitalist. Even as a physician herself, she was nervous about switching biologics. Prior to starting on Stelara, she took Humira injections for 8 years. Unfortunately, the Humira induced numerous medication related side effects that really affected her quality of life.
“I was worried that Stelara wouldn’t work and that I would feel even worse. Switching medications ended up being the best decision. I have been in remission since starting Stelara four years ago and feel better than I have since diagnosis. Stelara also allowed me to have a healthy pregnancy and baby!”
Jenna Ferrara recently made the switch from Remicade to Stelara. Last week, she did her first self-injection and says Janssen was beyond helpful throughout the process. Click here to learn about the Nurse Navigator Program. The program provides a registered nurse (in-person) to help support you as you learn to give yourself injections.
“Between the nurse navigator and sending a training nurse to my house, they made it so easy. I was nervous before my first shot, but thanks to the nurse, it was great!! I’m still waiting to see results, but things have been slowly getting better after only two doses.”
“I tried Stelara after Humira failed me and it never helped or worked from the start, but regardless it was sold to me as the best option. My attending at the time even said it was his top choice for patients and would have put me on it from the start if he had been my GI who diagnosed me. I was super disappointed it failed, but now I’m on Remicade and feeling better than ever,” said Julie Mueller.
Erin O’Keefe was diagnosed with ulcerative colitis in 2017 and initially was able to control her IBD with mesalamine. She started Humira in January 2020 and had what was believed to be a drug-related reaction that landed her in the hospital for 2 weeks and the ICU for 3 days.
“After I was discharged, I was started on Stelara, and I couldn’t be happier with the results. My symptoms are minimal, and I have even been able to re-introduce foods that I tended to stay away from. The injection is easy and I’m so happy not to be taking pills daily. Fingers crossed I can stay on Stelara for many years to come!”
“My 15-year-old son started Stelara last fall after a Humira fail (he was on Humira for 4 months when he developed psoriasis). It seems to be working as his markers and symptoms have slowly subsided. He has also put on some much-needed weight. Therefore, his doctors have recommended that he step up to the adult dose. Their aim to fully eradicate the inflammation—his calprotectin is still elevated. While Stelara is approved for pediatric use for psoriasis, it’s not yet approved for Crohn’s…so there have not been any studies.”-Michelle Boas
Hayley Weiss had to switch to Stelara after Humira caused her to get Psoriasis on the bottom on her feet and the palms of her hands. She just celebrated two years of being on Stelara. The 8-week dosing wasn’t doing enough to keep her IBD under control, so she was switched to every 6 weeks.
“I was doing well for awhile on the 6-week injections, but then at about 5 weeks I was getting symptomatic, so my doctor decided to actually give me another loading dose and I kept on with the 6 weeks for a little while until September of last year. At that time, my doctor approved me for every 4 weeks and that is what I have been doing.”
“I switched to Stelara from Humira in February 2019. I feel the best I’ve ever felt in a long time. A lot less breakthrough flares, energy levels are back, and inflammation numbers are lower than when I was on Humira. I haven’t had any negative reactions and have zero complaints!”- Erin Forman Carmiel
Martin R. was on Humira for about a decade. During that time, he calls the drug a “game changer” for bringing stability to his life when it came to managing his Crohn’s disease and reducing the need for steroids and antibiotics.
“After the regular blood tests for the azathioprine which I’ve been taking since 1992, I showed I had developed antibodies to Humira. I chose Stelara two years ago and it seems to have taken over where Humira left off. I don’t have additional side effects and a longer interval between injections, so that’s a bonus.”
After two years of remission, special education teacher, Jasmine Edwards, started flaring, despite being on Entyvio. Previously, Humira and Remicade gave her drug-induced lupus. Now, after just receiving her first dose of Stelara, she’s hoping the fourth biologic is a charm.
“I’m looking forward to the freedom of not having to get monthly infusions at the doctor’s office. I really hope Stelara puts me in LASTING remission so I can get back to a better quality of life. I’ve been feeling well since my loading dose infusion, but I’m also on prednisone. The only side effect I had after the infusion was feeling tired. In four weeks, I will administer my first at-home injection. I’m nervous about giving myself a shot because with Humira I used the pen, but I’m READY for remission, so I’ll try anything!”
Amanda Hart has had two doses of Stelara so far. Unfortunately, her MRI still shows new inflammation.
“I’ve been increased to once every 4 weeks. If there is no improvement in three months with the higher dosage, I’ll be looking for a new approach. I was originally on Humira, but switched due to my symptoms. Sadly, the symptoms on Stelara have been worse and my diet is more restricted then when Humira was not considered effective anymore.”
Alli Butler was previously on Humira, she finds Stelara makes her feel similarly.
“I’m currently taking Stelara, it has worked great for me and got me through my third pregnancy. Hoping it continues to work well through my postpartum experience.”
Tips for Self-Injecting Stelara
Lori Plung has battled Crohn’s disease for more than 40 years. Since that time, she’s been on four different biologics. She credits Stelara as her easiest patient experience.
“Remicade and Entyvio are obviously infusions—they took time and planning to organize appointments at infusion centers and waiting there while being infused. I was on Humira which was nice to have the freedom to inject at home, but I didn’t like the pen model of injecting. I haven’t had any problems with Stelara. I started my loading dose infusion in April 2019 and give myself the injection every 8 weeks. I love that it’s a pre-filled syringe and that I can do the injection in my home.”
Claire Paschall recommends taking the injection out of the fridge so it can warmup to minimize the burn.
“The automatic needle pullback jolts if you take your thumb off once done and it can hurt (so slowly take your thumb off). I feel like it took longer to build up in my system than Remicade and Humira, however I haven’t had any side effects to report. I have been flaring with my rectal disease, but my small intestine disease is in remission.”
Plea for a Pen-Style Injection
Courtney Meyer started Stelara in March and immediately saw improvement with her symptoms. Previously, she had tried Remicade, Humira, and Entyvio.
“It’s so nice not to have to get an IV after the loading dose. The only downside is that it doesn’t come in a pen option like Humira, and I have difficulty with needles, so I get it administered by a nurse in my GI office every 8 weeks. They inject it in the back of my arm, so I don’t have to deal with the usual stomach or thigh injection sites. It’s the most convenient and easiest treatment of Crohn’s that I’ve been on in 15 years! I was able to stop other medications and I’m just on Stelara. No side effects so far.”
Julianne Bossert was diagnosed with Crohn’s more than 25 years ago. She was on Humira for almost 5 years and says it worked great, until it didn’t. She started Stelara in February and is gearing up for her fourth dose next week.
“I feel like I’m on the cusp of getting better, but not quite there yet. I’m about two weeks out of being off steroids that I have been on for a year. So, my crutch is now gone, and we will really begin to see if Stelara is working. My two biggest complaints are the shot itself. It’s not a pen like Humira, which was way easier to administer. The syringe is way scarier, and they show you how to inject it once and then off you go! Awful anxiety. The other complaint is how different the relief is. When I was due for my Humira about two to three days leading up to I was in bad shape…very sick. But I’d get the injection and feel better within an hour. Leading up to Stelara, I feel awful, get the shot, and still feel awful for days. The turnaround time isn’t as quick for me.”
Emily Beaman is an IBD mom of two who initially started on Humira and was switched to Stelara two years ago.
“I will say the only thing I don’t like is the injection. I prefer the Humira pen-style. I have yet to be able to give myself the injection which means I have to rely on my husband to do it. I find it hurts more than the original Humira did for me (the Citrate-free version wasn’t available while I was on it) I really wish they would come out with a pen-style injection. I worry about if I ever had to give it to myself…that I wouldn’t be able to.”
Stelara Tips for the IBDMom (or Dad!)
Brooke Abbott is a patient advocate, single mom, and co-founder of IBD Moms. She shares helpful tips for administering the injection whether at home or at your doctor’s office.
If injecting at home:
Keep an injecting kit. Have a small kit prepped with alcohol wipes, band-aids, and cotton balls or pads.
Prep the night before. Hydrate as much as possible and make sure you have your kit ready and prepped.
Injection day. Make it a relaxing event. Have your injection before a family movie night so you can get some cuddles in after injecting yourself or being injected.
Normalize your treatment. “Practice” with your little ones with a play doctor’s kit. I used to always play doctor and do fake injections, to normalize living like a patient for my little one.
If injecting at the doctor’s office:
Book Appointments to include self-care time. I try to book appointments for my injections early in the day so I can have time after to do something for me. Whether it’s going to grab a coffee and read, meet with a friend, or have a nice lunch.
Take the LO (little one) with you. I am all about including my LO in my patient life. I want him to be able to ask questions and voice concerns. So sometimes when he is out of school, I will take him with me. It’s good for him to hear the progression of the treatment and to see mommy being brave and getting an injection.
Multitask. Try and take all your blood tests and everything at one time. That way you don’t have to make any unnecessary trips to the doctor’s office.
Let’s Talk Side Effects
Overall, the consensus from patients was little to no side effects—which is a HUGE win. Of course, each person’s experience with IBD and with biologics is unique.
Stelara is the first biologic for Shanna Quinn. She started on it in July 2020 following bowel resection surgery. She found starting off with an infusion was a bit “scary” and much preferred giving herself a shot which she says is “so easy.” In her opinion, making the decision to start a biologic was the biggest hurdle, rather than choosing one.
“It doesn’t hurt, although you do have to go slow or else the medication will sting a bit. One drawback is that I get tired afterwards. I’ve learned to take the day and relax and sleep, if needed. I do my shots on the weekend to allow for that. My GI and I discussed a few options before choosing Stelara. I took a test that asked questions about priorities, risks, concerns, etc. The results gave me details about how each biologic stacked up against your concerns and priorities. Take the “IBD&Me” test for yourself here. Knowing you may need to be on a medication for life or knowing it may fail you is hard to wrap your brain around. I hope IBD will get way more targeted and specific regarding treatment options.”
Lyes Mauni Jalali has found the side effects of Stelara to be more draining than Remicade, but not as bad as Entyvio. He says the first three days after the injection he needs considerable rest.
“I have also noticed systemic night sweats as far out as five weeks after the injection. For me, this is unique to Stelara in terms of my individual experience. The silver lining is that Stelara seems to have generated more stability and normalcy from an IBD symptom perspective. My level of disease is quite severe and to date, Stelara has had the best outcome. One drawback however is that insurance companies are less willing to grant physicians discretion to prescribe more frequent injections. My GI has said he faces greater pushback on Stelara specifically.”
Paula Hepburn has been on Stelara for 1.5 years, it’s the only biologic she’s been on thus far. She feels like it’s working well to control her Crohn’s disease.
“The first infusion gave me crazy fatigue for four days and I often get tired after each injection. Sometimes it only lasts a few hours, sometimes into the next day. I feel fortunate to have access to this medication because it helps control my IBD so well.”
Madison Morgan has been on Stelara for 2 years. She started it following an ileocecal resection that involved the removal of 8 inches of intestine. Madison finds the injections to be easy. She does experience some side effects though.
“I get a headache immediately after the injection that lasts about 15 minutes, the worst side effect I’ve had is yeast infections and UTI’s, I’ve never had them until Stelara and have had 6-7 yeast infections in the last two years and 2 UTI’s. A couple weeks before my Stelara injection (once every 8 weeks, 95 mg), my arthritis from my Crohn’s gets pretty bad, but seems to get better after my injection.”
“Stelara has been amazing! Aside from the infusion loading dose, it’s quick and easy and fairly pain free. I have minimal side effects other than sometimes feeling sleepy after my injection, but other times I have crazy energy. Overall, this is the only biologic that has worked for me for more than a couple of years.”-Bethany Lowe
“I’ve found the injections to be almost painless and I’m a huge wimp with shots. It took a few tries to find the right timing and frequency for my shots, but I do them every 4 weeks and approximately 1-3 days before each shot, I start to get some IBD symptoms…so I know it’s working!”-Danielle Fries
Olivia Lippens was diagnosed with ulcerative colitis 20 years ago. She’s an IBD mom of 3. Lucky for her, she was able to get through the first 18 years of living with IBD without being on a biologic. Unfortunately, she experienced a postpartum flare two years ago that is still wreaking havoc on her life.
“I started Stelara about a year ago. It’s super easy to use. The only side effects I’ve felt are being tired for a day or two after the injection. I feel quite lucky that I was able to start Stelara, rather than other options. It’s easy to take because you do it at home, and the side effects are non-existent for me. Unfortunately, it hasn’t been as effective as we had hoped. I do my injection every 4 weeks instead of 8. From a tolerance and side effect standpoint, Stelara has been a good medication for me, but it still frightens me to be on a biologic. I know everybody manages this dance in their own way.”
Krista Cherrix has been on Stelara for one year. She prefers the syringe injection over the Humira pen but has unfortunately dealt with weight issues since starting it.
“I have gained a TON of weight on it and can’t seem to get it to budge even with diet and exercise. I also have not been able to get pregnant so far, which isn’t necessarily the drug, but I got pregnant with my first (pre-diagnosis) without trying.”
“I took Stelara monthly for nearly 2 years and had no side effects. My diarrhea was still frequent and after having an MRI and a colonoscopy, the results showed that I still have significant inflammation in my small bowel. I am going to be starting Humira in hopes of healing the inflammation.”-Marsha Gagnon
Dealing with Insurance and Cost
Shawn Bethea is an IBD patient advocate and author of “My Tummy Really Hurts”. Overall, she considers her experience on Stelara to be good, but wants others to know there have been some hurdles to cross along the way.
“At first, I truly didn’t think the medication would work for me. I was placed on the standard dosing and scheduled to receive my injection every 8 weeks. During the initial weeks I’d feel great! I had more energy and didn’t feel the sharp pains as I usually did (in my stomach area). I wasn’t going to the bathroom as often and even my Eczema seemed to be clearing up.”
However, after those first initial weeks, she noticed a decline. Her energy decreased, her Eczema became bothersome, and her joints would ache. She communicated her concerns with her GI who prescribed injections every four weeks.
“With any high dollar medication comes unique challenges to those of us who don’t live on a Beyonce budget. Between my insurance, the patient assistance program, and copay, the drug was running about $20,000 monthly. When you have insurance and nothing changes like a lapse of coverage or a job change, this is something you can possibly juggle (depending on the level of coverage/assistance, but mine was pretty good). The problem came in when I changed jobs, lost insurance, and had to wait for new insurance to take effect – which was delayed, of course.”
Shawn stopped taking Stelara, due to lack of insurance coverage, everything was impacted. She began to experience joint pain, became extremely tired, and was using the bathroom more—even experiencing extreme constipation.
“Overall, I love Stelara, but I hate the way our healthcare system operates. No drug should run half of someone’s salary monthly. But I subscribe to the system because I simply want to live and be healthy like everyone else.”
Jacquie Persson has been on Stelara since 2019. She started off with the recommended dosage of injecting every 8 weeks, but after 6 months, she was moved to every 4 weeks.
“Since starting Stelara, my Crohn’s disease has been well-managed I haven’t had to take prednisone since 2018, after depending on steroids on and off from 2016-2018. Financially, being on this drug is a little anxiety inducing. The list price is over $20,000 per injection and I’m constantly on edge wondering when or if my insurance will decide to stop covering it. My copay is over $200. I currently have copay assist which brings my out of pocket down to $5, but what if that program were to go away?”
“I started Stelara in December 2016 after Remicade failed me. I had success with small flares here and there. In March of 2021 I had a big flare—my first in about 5 years and was out of work for 2 months. My GI wanted to increase my Stelara from every 6 weeks to every 4, but my insurance repeatedly denied it and just finally approved it about a month ago, thankfully in time for me to be feeling better.” – Mary Fordham
“The dosing is wild! I started at 8 weeks and now I’m moving to six…and I know some people on every 4 weeks. Insurance has a really hard time approving more frequent injections.”-Catalina Berenblum
Click here to learn more about Janssen’s CarePath Savings Program for Stelara.
Success Stories on Stelara
“Stelara has been a Godsend for me. I had an ileocolic resection nearly five years ago and have maintained remission with Stelara and azathioprine since my surgery. The side effects have been minimal. For me, it’s been one of the easier injections I’ve used. It doesn’t sting or burn like Humira did prior to the release of the Citrate-free version. I take Stelara every four weeks instead of the typical eight.”-Jennifer Ryan Carmichael
Amanda Pennwell was diagnosed with Crohn’s when she was 8 years old. She’s now a mom of 3 and due with her fourth baby this October. She’s been on almost every drug approved for Crohn’s disease. She says she can honestly say Stelara has changed the severity of her Crohn’s the most significantly, with the least amount of side effects and the biggest improvement to her day-to-day life. She started Stelara in April 2019 after flaring with her twins. She was able to get pregnant, have a smooth postpartum experience and breastfeed her third baby while on it.
“Stelara helped me get my life back. This is something I never dreamed my broken body would ever be capable of doing. I’m so thankful that Stelara is continuing to work for me. I have been healthier than ever. I work out all the time and my body feels strong. I haven’t experienced abdominal pain more than a dozen times in the past two years. It’s truly remarkable. Stelara has enabled my husband and I to chase our dreams while raising our babies! I work part-time while staying home with the kids. We our building our dream home and I know I couldn’t keep up with it all if I felt the way I did two years ago. I’m thankful for research and better IBD drugs like Stelara.”
Patient Advocate, Founder & President of Patient Authentic, Lilly Stairs, credits Stelara for saving her life.
“I have been in medically controlled remission for nearly 8 years from all three of my autoimmune diseases – Crohn’s Disease, Psoriatic Arthritis, & Psoriasis. I went from bleeding ulcers in my small intestine and total body arthritis that left me paralyzed in pain to living symptom free and thriving as a solopreneur. I am so grateful for this brilliant medical innovation and only hope that someday all autoimmune patients can have this type of experience on a medication.”
Check out previous biologics that have been featured on Lights, Camera, Crohn’s. These articles have NO affiliation or guidance from pharma. All content was created thanks to countless IBD patients sharing their personal patient journeys with the hope of helping others.