Nine years since my life split into a clear before and after. Before motherhood. Before learning how much my heart could stretch. Before realizing I could love someone so fiercely while still carrying a body that has never felt predictable or safe since my Crohn’s diagnosis in 2005.
I entered motherhood already shaped by chronic illness. Crohn’s disease had been part of my identity for years before I ever held a positive pregnancy test in my hands. I knew what it meant to live with uncertainty. I knew how to navigate flares, fatigue, medications, and fear. What I didn’t know was how those experiences would transform me into an entirely new version of myself—an IBD mom. When I got pregnant, I only knew of one woman, my cousin’s wife, who has Crohn’s, and stayed on her biologic throughout her four pregnancies.
This week on Lights, Camera, Crohn’s a reflection on my patient journey and what it felt like to go through family planning, pregnancy, and motherhood as a woman with IBD and what I want others to know.
When I Was “Just” the Patient
For a long time, my world revolved around survival. Appointments. Side effects. Lab work. Scopes. Injections. Recovery days. Canceled plans. Hospitalizations. Weaning off steroids. Learning how to read my body’s subtle warning signs. Learning when to push and when to rest.
Crohn’s taught me resilience long before I knew I would need it in motherhood. But it also taught me hyper-awareness. A constant scanning of my body for what might go wrong next. A relationship with fear that felt both protective and exhausting. As time passed, I learned to listen to how my body was speaking to me through symptoms.
When I imagined becoming a mom, that fear came with me. I had bowel resection surgery two months after getting engaged, I was planning a wedding, and for the first time after a decade of living with Crohn’s I had FINALLY heard the word “remission” for the first time. My fiancé (now husband) and I knew once we got married 10 months later, that we would need to capitalize on that remission and hopefully start our family while we knew I was well enough to do so. Despite being in remission, I still had many questions and thoughts racing through my mind:
Would I be healthy enough? Would my medication be safe? Would I flare during pregnancy or postpartum? Would my disease rob me of moments I dreamed about? Would I be hospitalized and away from my child?
…the list went on. If you’re an IBD mom or one day aspire to become one, you know the questions we all face.
I wanted to become a mom more than anything, but I carried quiet doubts about whether my body was capable of sustaining not just a pregnancy, but a lifetime of caregiving.
Becoming a Mom with Crohn’s
The day I became a mom everything shifted. Not because my Crohn’s disappeared. Not because my health suddenly became perfect. But because my why expanded.
Suddenly, my body was no longer just something I endured. It was the home my child lived in. The vehicle through which I would show up, nurture, protect, and love. That realization changed the way I approached my overall health as a mom with IBD. My pregnancy with Reid gave me a renewed sense of love and appreciation for my body.
Taking my medication wasn’t just about me anymore. Advocating at appointments wasn’t just self-preservation. Resting wasn’t weakness. Prioritizing sleep wasn’t indulgent.
It was parenting. I began to see caring for myself as an extension of caring for my child. That mental shift — from “patient” to “patient who is also a mother” — was subtle but seismic. Rather than waiting until I was too weak to even walk through the emergency doors by myself, I started to alert my care team within days of recognizing that my Crohn’s seemed a bit “off” so that we could nip any issue that arose in the bud.
Learning to Mother Through Difficult Days
Motherhood with Crohn’s is not picture-perfect. But regardless of your health status, there is no such thing as perfect when it comes to being a mom. You must remind yourself of this and give yourself grace.
There are days I have shown up with heating pads tucked under sweatshirts. Days I’ve read stories from the bathroom floor. Days I’ve powered through school drop-offs on pure adrenaline and grit. Days I’ve shown up to PTO meetings and coached soccer on pain medication. Days I’ve cried because I felt like I was failing at both having a chronic illness and being a mom.
I’ve been in “remission” since 2015, the entire time I’ve been a mom, which I’m eternally grateful for, but just because I’ve been in remission does not mean I don’t face countless struggles with this disease. That’s something I wish people would understand. IBD is a chronic illness, just because someone is in remission doesn’t mean they are free of pain, stress, and more.
I’ve had to learn that good motherhood doesn’t require constant physical perfection. Some seasons look like big adventures and energy. Others look like quiet cuddles, movie days, and choosing rest over outings.
Both count.
My children are being raised by someone who understands empathy, flexibility, and listening to their body. That matters. You’ll notice as a parent with chronic illness how quickly your little ones develop empathy. It’s next level. And so beautiful. You don’t even have to teach it, it’s innate in them because of their daily reality.
Raising a Child Who Understands Illness and Compassion
One of the unexpected gifts of being an IBD mom is watching compassion take root early.
My three children know that bodies work differently. That medicine helps people live. That rest is sometimes necessary. That we don’t judge what we can’t see. They’ve learned that strength isn’t always loud.
Sometimes strength looks like getting up anyway. Sometimes it looks like asking for help. Sometimes it looks like choosing yourself.
Those lessons feel just as important as anything in a textbook.
How Motherhood Changed My Relationship with My Body
Before becoming a mom, there were times my body felt like the enemy.
The source of pain. The reason plans fell apart. The thing holding me back.
Motherhood complicated that narrative.
This body carried three children. This body nourished three children. This body continues to show up, even when it’s tired, inflamed, or aching.
It isn’t perfect. But it is more than capable.
I still have hard days. But honestly, I have a lot more amazing days. I never take a feel-good day for granted. Even after more than two decades of living with Crohn’s, there are still moments where I fantasize about what it would be like to just be a healthy person and not have the burden of my disease.
But I also hold more gratitude now. A grounded, honest one. My three children are my greatest motivation to push through and be my healthiest self.
From Surviving to Advocating
Becoming a mom didn’t quiet my voice.
It amplified it. Ironically, this blog, Lights, Camera, Crohn’s, launched July 23rd, 2016… I found out TWO days later I was pregnant with my oldest son, Reid. So, this blog truly captures every moment of pregnancy, family planning, and motherhood from the perspective of someone who learned as I went.
I advocate not only for myself now, but for a future where my children grow up in a world that understands chronic illness better than the one I grew up in.
I speak out because I want fewer people to feel dismissed. I share stories because I want fewer people to feel alone. I push for better care because I want better options for the current and the next generation.
I want couples to feel empowered by their decision to have a family, however that may look for them.
I hope women feel comforted by all the constant research going on to address what’s safe and effective as they bring life into this world. I participated in IBD pregnancy studies with all three of my kids, my youngest who turns five in July will be followed through the PIANO study until age 18!
Motherhood turned my survival into purpose.
Nine Years In: Who I Am Now
I am still a patient. I am still navigating Crohn’s. I still face uncertainty at times, but through a much different lens.
I am also a mom of nearly a decade.
A mom who has learned how to hold fear and hope at the same time. A mom who knows that love is not measured in energy levels. A mom who shows up imperfectly, consistently, and wholeheartedly.
I didn’t become a mother despite Crohn’s.
I became a mother with Crohn’s.
And over the past nine years, I’ve learned that those two identities can coexist, not in conflict, but in strength. I swear I blinked and somehow my sweet Reid, my baby, is nearly double digits. I don’t think there will ever be a time in my lifetime that I don’t stare at all of my children in awe of their existence, I’m sure if you’re a parent you feel the same way. It’s a miracle they are here, healthy, and thriving. So much of why I share my family so openly is to show how my children, who were all exposed in utero to Humira, are doing so beautifully in school, sports, and socially.
To the IBD Moms (and Future Moms) Reading This
You are not broken. You are not behind. You are not failing.
You are doing one of the hardest jobs in the world while managing one of the hardest diseases. That deserves recognition.
Later this month, my Reid is nine.
Nine years of learning. Nine years of adapting. Nine years of loving fiercely in a body that isn’t always kind.
New research published in Clinical Gastroenterology and Hepatology offers a glimpse into what Crohn’s disease may look like before it officially begins and the findings could have major implications for how we understand, monitor, and potentially prevent the disease in the future. As an IBD mom of three kids ages 8, 7, and 4, research like this always feels a bit bittersweet. While I’m grateful for the strides in research, I’m apprehensive about the burden and grief I would feel if I was able to know if my children would one day receive the same diagnosis.
As someone diagnosed with Crohn’s at age 21, I’m grateful for my two decades of blissful, perfect health. Had I known a complicated chronic illness would one day riddle my body, I’m not sure how I would have coped and dealt with that news.
This week on Lights, Camera, Crohn’s a look at what the latest research discovered, the complicated emotions IBD parents may feel, and what the future may hold for us all as a community.
Why This Matters: Crohn’s May Start Long Before Diagnosis
The study found that certain immune responses in the blood, specifically elevated IgG antibodies targeting a conserved region of bacterial flagellin (a protein found on gut bacteria) were present years before people were diagnosed with Crohn’s disease. In other words, the immune system appeared to be reacting to gut bacteria long before symptoms like abdominal pain, diarrhea, or weight loss ever showed up.
This study followed 381 first-degree relatives of Crohn’s patients, 77 of whom went on to develop the disease. Among them, 28 (more than a third) had elevated antibody responses.
One of the most important takeaways from this research is the timing. Most Crohn’s biomarkers are identified after the disease is active. This study, however, suggests that immune dysregulation may begin well in advance of clinical disease. This supports the idea that Crohn’s develops gradually rather than suddenly.
That distinction matters. If Crohn’s truly has a long preclinical phase, it opens the door to earlier monitoring and potentially earlier intervention, especially for people who are already at higher risk, such as first-degree relatives of those living with Crohn’s disease. A first degree relative is a parent, child, or sibling.
According to the Crohn’s and Colitis Foundation, 36% of children born to two parents with IBD will develop the condition at some point during their life. The risk is substantially less when only one parent has IBD, with The National Human Genome Research Institute sharing there’s a 7-9% chance.
A Potential Blood Test for Risk, Not Diagnosis (Yet)
It’s important to be clear: this is not a diagnostic test and it’s not something patients can request from their doctor today. But it does raise the possibility that, one day, blood-based immune markers could help identify those who are more likely to develop Crohn’s before symptoms begin.
For families affected by IBD, this kind of risk stratification could be meaningful. Instead of waiting years for symptoms to escalate, or for damage to occur, high-risk individuals might one day be monitored more closely or offered early preventive strategies. As an IBD mom, I feel as though I would struggle with knowing whether this was something I wanted to dig deep for, while also not wanting to get in the way of stopping disease progression. It’s not a black and white situation by any means. If these types of blood tests are available when my kids are teenagers, and I were to get results that broke my heart, I’d feel obligated to be transparent and share—would I really want my kids, who have witnessed me living with Crohn’s their whole lives, to know this would one day be part of their own story? It stresses me out just trying to imagine it.
What This Could Mean for Prevention Research
Another compelling aspect of the study is that the immune response was directed at a conserved portion of bacterial flagellin. This means it’s shared across many gut bacteria. That finding has sparked discussion about whether future therapies or vaccines could target these immune pathways in people who are high risk for Crohn’s.
While prevention remains a long-term goal rather than a current reality, this research reflects a broader shift in IBD science: moving upstream to understand why Crohn’s starts, not just how to treat it once it’s already established, and as an IBD mom I am certainly grateful for that.
What This Doesn’t Mean (Yet)
As exciting as this research could be, it’s not a crystal ball. Not everyone with these immune markers will develop Crohn’s, and many people with Crohn’s were never tested years before diagnosis. Larger studies are still needed to validate these findings across diverse populations and to determine how predictive these markers truly are.
For now, this study adds another piece to the puzzle, one that reinforces what many patients already know intuitively: Crohn’s disease doesn’t start the day you’re diagnosed.
The Bigger Picture
Our community often experiences years of delayed diagnosis, misattributed symptoms, and unanswered questions, so research like this matters. It shifts the narrative from “why didn’t we catch this sooner?” to “how early can we understand and intervene?”
While we’re not there yet, this study represents an important step toward a future where Crohn’s disease is identified earlier, monitored more thoughtfully, and one day possibly prevented altogether.
For parents living with IBD, research like this can carry an added emotional burden. The idea that Crohn’s disease may be detectable years before symptoms begin can stir complicated feelings, especially for those who worry about whether they’ve passed on a genetic risk to their children. Some parents may want every possible tool to protect their child’s future health, while others may find the thought of early testing anxiety-provoking or guilt-inducing. There’s no right or wrong response. I get it and struggle with how I’d handle this, too. Living with IBD already requires navigating uncertainty, and this research underscores how deeply personal decisions about risk, knowledge, and monitoring can be for families. As science moves forward, it will be just as important to support parents emotionally as it is to advance early detection tools.
It is an exciting and transformative time for the IBD community when it comes to family planning and pregnancy. For years, patients and providers faced uncertainty and conflicting guidance about everything from fertility to medication safety. Now, with the publication of the Global Consensus on IBD and Pregnancy, we finally have a unified, evidence-based roadmap created by leading experts worldwide.
This groundbreaking research, jointly published across multiple top journals, is more than just a collection of data—it’s a lifeline for patients, caregivers, and clinicians seeking clarity and confidence. And for the first time, that guidance comes to life through a series of 12 videos now available online. As the sole U.S. Patient Ambassador and Group Lead for patient advocates worldwide, I was honored to contribute not only to this historic project, but also to share my own journey in the video series—bringing the patient perspective directly into the global conversation.
Grateful for Dr. Uma Mahadevan and the entire team for their incredible work on the Global Consensus.
Check out the video series
Following the release of the research from the 2025 Global Consensus Conference on IBD, a series of 12 videos were also published on the PIANO (Pregnancy in IBD and Neonatal Outcomes website), featuring experts speaking on best practices, emerging data, and consensus statements.
Among those 12, my Patient Perspective video is unique. It’s the only video in the lineup where you hear firsthand experience from an IBD mom. During my unscripted 18-minute video, I share openly about the tough decisions I faced personally, the hopes and worries I encountered while bringing babies into this world, and what I want fellow patients and doctors to know. As an IBD mom of three kids (now ages 8, 6, and 4) who were all exposed in utero to Humira, I have a unique perspective to share.
I know what it’s like when you’re 32 weeks pregnant and have to do a biologic injection while you see your baby’s foot kicking at your belly. I know how stressful it is when you don’t know if you’re going to flare while pregnant or shortly thereafter. I know how complicated and overwhelming it can feel when you’re juggling a chronic illness along with pregnancy and motherhood.
Having a patient video placed alongside expert commentaries is a statement: our lived experience is essential to understanding how guidelines work in the real world. I hope my words leave you feeling seen and empowered.
Preconception Counseling and Contraception for Patients with IBD
The Patient Perspective
Why These Videos Matter
Each video is a piece of a bigger puzzle. Together they tell a story about where we are now, where we need to go, and how patients can be—and must be—central to that journey.
Bridging gaps between patient, clinician, and researcher. These videos are designed not just for patients, but for caregivers, physicians, policy makers, and anyone interested in improving IBD care. Seeing things through the patient lens can spark better communication, more empathic care, and guidelines that address what matters most.
Empowerment through shared experience. Whether it’s coping with symptoms, navigating treatment decisions, or facing uncertainty, this research will make you feel more confident in every decision you make along the way. Rather than feeling like there’s an overwhelming amount of gray area, you can see the roadmap of decision-making created from the Consensus that will help you each step of the way.
How to Watch & What To Do Next
Watch the videos: Listen firsthand and educate yourself. An educated patient is an empowered patient. It’s one thing to read a published medical study, it’s especially helpful to see these videos and watch the research come to life.
Join the conversation: Use these videos as conversation starters, take what you learned into clinic visits, have conversations with your partner/family/friends, or on social media. When you’re talking about family planning, make sure your GI and Maternal Fetal Medicine doctors are aware of the Global Consensus on IBD and Pregnancy to ensure they are up-to-date on the very latest research.
Join the PIANO study. This is a great way to become a citizen scientist and use your journey to motherhood as a way to pave the way for others. I participated in PIANO with my youngest child, and he will continue to be “followed” until age 18. It does my heart good to know we’re helping bridge the gaps in understanding so women with IBD now and in the future can feel more comfortable about staying on medication in pregnancy and during breastfeeding.
Too often, patient voices are an afterthought or an add-on. Being featured as an integral voice, not a sidebar, is a powerful shift. The fact the Global Consensus Conference team made such a point to incorporate patients like myself who are IBD moms, from around the world, goes to show just how inclusive and comprehensive this research is.
Final Thoughts
Living with IBD means navigating uncertainty, physical challenges, and emotional strength, but it also means being part of a community that continues to push boundaries in care. These videos highlight not only the science and data, but the lived realities that bring those numbers to life. Patient voices don’t just complement medical expertise, they help shape the future of care. By placing my perspective alongside global experts, the Consensus reminds us that guidelines are most powerful when they reflect both evidence and experience.
As an IBD mom, I think about what this progress means for my three children and for the next generation of families impacted by this disease. I volunteer my time and energy for these projects because they are at the heart of my patient advocacy and genuinely matter so much to me. The inclusion of patient voices today paves the way for a future where no one feels alone in their decisions about pregnancy and IBD. Together—patients, clinicians, and researchers are building a roadmap that will make the journey clearer, safer, and more hopeful for those who come after us.
When you live with Inflammatory Bowel Disease (IBD), you become an expert in knowing life can throw you curveballs at any given moment. Those curveballs are especially worrisome and scary during pregnancy and after you become a mom.
For one IBD mom who wishes to remain anonymous, that curveball came in the form of a rare and dangerous vitamin K deficiency that caused life-threatening complications for both her and her newborn son after delivery. Now, two years later, a published medical case study based on their experience is helping raise awareness of this rare issue, offering hope that future pregnancies in the IBD community might benefit from earlier detection and intervention.
Diagnosed Young, Navigating the Unknown
This mom was diagnosed with Crohn’s disease at age 13, and now at 34, she’s lived with IBD for more than 20 years. Her journey has included numerous medications, including a long stretch on Humira, which she remained on during her pregnancy, and four partial small bowel resections. She’s also undergone several exams under anesthesia due to complications like abscesses and fistulas.
Thankfully, during her pregnancy, her Crohn’s was well-controlled with no active disease, making the post-delivery complications much more shocking.
A Sudden Turn After Delivery
After giving birth to her son (we’ll call him “B”), what should have been a joyful moment quickly turned traumatic.
She spent 16 days in the hospital, including three in the ICU, while her newborn faced a 23-day NICU stay. The cause? A severe, undiagnosed vitamin K deficiency, which led to hemorrhaging in both mom and baby. The medical team was blindsided—none of them expected this.
Understanding Vitamin K Deficiency & IBD
Let’s get one important thing straight first. This situation is not about skipping the vitamin K shot that newborns typically receive. The mom explains:
“It’s imperative that newborns receive a vitamin K shot after they are born to prevent vitamin K deficiency bleeding. The American Academy of Pediatrics recommends that all newborns receive a single dose of vitamin K, because babies are naturally born with very little in their bodies. In our case, my son did get the shot—but because I was unknowingly severely deficient in vitamin K during pregnancy, his vitamin K levels in utero were dangerously low, leading to a brain hemorrhage before he was even born. The bleeding he experienced was similar to what some babies experience when they don’t receive the shot, but in our case, it happened earlier—and was not caused by withholding care. In fact, he needed far more vitamin K after birth to restore safe blood clotting levels.”
This vital distinction can prevent confusion and reinforce just how important that standard vitamin K shot is for all newborns.
What She Wants Other IBD Moms to Know
“Knowing what I know now,” she says, “I want fellow IBD women to understand a few key things about vitamin K deficiency during pregnancy:”
This is rare. Most pregnant people with IBD will never encounter this issue. “I hope that offers peace of mind. But as we all know, knowledge is power—especially when you live with IBD.”
If you’ve had bowel resections or are deficient in other fat-soluble vitamins (like A, D, or E), consider bringing this case study to your GI and OB/Maternal Fetal Medicine (MFM) doctors. Ask about checking vitamin K levels, as well as PT/INR and PTT, which monitor blood clotting.
You can develop a deficiency during pregnancy even if you’ve never had one before. “Outside of pregnancy, I had no clotting issues. But between my history of resections and my baby’s increasing demand for nutrients, my levels dropped—and no one knew.”
Looking Back: What She Wishes Had Been Done
“If we had been monitoring my vitamin K levels, PT/INR, and PTT throughout my pregnancy, we likely would have seen early warning signs,” she says. “These aren’t standard tests, but I hope someday they will be for IBD moms with similar risk factors.”
A Silver Lining in the Study
Despite the trauma, having their experience turned into a published medical case study brought a sense of closure.
“When they told us they wanted to publish it, I felt incredibly validated. This wasn’t just something we lived through—it’s now out in the world to potentially save lives. That’s the best-case scenario for us.”
The comprehensive care team—consisting of her OB, MFM, GI, hematologist, and PCP—remained closely connected throughout the experience. After both mother and baby were stabilized, Ohio State’s hematology team and Nationwide Children’s Hospital worked together to identify the deficiency as the root cause for both patients.
“They didn’t miss anything—they acted on the knowledge they had at the time, and when things went south, they sprang into action. I’ll always be grateful for that.”
“B” Today: A Story of Resilience
Despite a traumatic start, B is now a thriving, happy, and a miraculously healthy two-year-old.
“We were so worried about long-term impacts due to the hemorrhage in his brain, but he is now meeting and exceeding all his developmental milestones. He doesn’t need any additional support. It’s truly a miracle.”
His early care included close monitoring from neurology and the Early Development Clinic at Nationwide Children’s Hospital, along with early intervention specialists. Today, all those appointments are in the rearview mirror.
What About Future Pregnancies?
The reality is that this situation may recur if she decides to grow her family.
“My doctors believe I’d face similar risks, so we would monitor everything very closely: vitamin K levels, PT/INR, PTT and I’d likely receive IV vitamin K infusions throughout pregnancy to stay ahead of any deficiencies.”
Lifting the Tide for Others
After two decades of managing Crohn’s, she knows how isolating chronic illness can be.
“It’s hard. It’s lonely. It’s easy to feel invisible. But finding others who share their stories and who get it has been a game-changer for me. That’s why I’m sharing this now. Even if this specific challenge never affects you (and I truly hope it doesn’t), I hope you feel a sense of solidarity. A rising tide lifts all ships and if sharing our story lifts someone else’s experience just a little, it’s worth every word.”
If you’d like to contact this IBD Mom don’t hesitate to reach out to me, and I will connect you. It’s stories like this that help to pave the way for future families.
It feels like a punch to the gut. Even though you’re anticipating it, the experience is not easy for anyone. For patients with inflammatory bowel disease (IBD), stability is everything. Whether living with Crohn’s disease or ulcerative colitis, finding a medication that keeps symptoms under control is often the result of years of trial and error. So, when insurance companies or healthcare systems mandate a switch from a familiar biologic like Humira to a biosimilar such as Hyrimoz or Amjevita, the decision can feel sudden, confusing, and unsettling. As of right now (May 2025) there are 22 FDA-approved biosimilars on the market for infliximab (Remicade), adalimumab (Humira), and Ustekinumab (Stelara) with many more coming down the pipeline.
It’s easy for providers to rely solely on the science that says it should be a “seamless,” effortless transition for patients and caregivers—but that’s not always the case, nor is it ever a guarantee. This week on Lights, Camera, Crohn’s we hear from more than 30 patients who have lived this reality. While many people seem to do well clinically, it’s imperative that we also discuss the mental and emotional toll this forced non-medical switch takes on people with chronic, debilitating illnesses and their caregivers. This blog aims to demystify biosimilars, highlight the emotional and clinical complexity of switching therapies, and provide guidance for healthcare providers and patients navigating this challenging transition.
As someone who was forced off my Humira after being on it for 16 years and put on Hyrimoz, I empathize with how complicated this is for patients. Not only was I petrified to switch—but I had a God-awful experience that resulted in going from deep remission to dealing with an adverse response for two months of my life, while trying to be a mom to three young kids.
I don’t take this subject lightly and frankly; I don’t care who I piss off by sharing this patient experience transparently. I angered some donors from a Pharmacy Benefit Manager (PBM) when I spoke on stage in front of a large crowd last fall genuinely thanking my IBD nurse who went to bat for me countless times to help me win my appeal to get back on Humira—this isn’t about profit, it’s about patients. We don’t owe anyone an apology for being uncertain about being told we need to switch our heavy-duty drug therapy not by a doctor, but by someone working in corporate America.
Biosimilars are not generics
First things first, I must clear the air on this. Almost every direct message I receive from patients refers to biosimilars as “generics” …and that’s a common misconception that needs to be done away with.
Unlike generic drugs, which have identical active components, biosimilars are comparable but not identical to their originator drugs. According to the US-FDA, a biosimilar is a biological product that is potent, pure, and safe and that is “highly similar to and has no clinically meaningful differences from an existing US-FDA-approved reference product”. In other words, biosimilars are equivalent to the reference biologics regarding safety and efficacy.
When you hear the terms “originator” or “reference” biologics—that means Infliximab (Remicade), adalimumab (Humira), and Ustekinumab (Stelara). There are many other biologics of course, but so far, these three biologics have biosimilars approved by the FDA. You can familiarize with their names that I’ve listed below so if you see one listed in a letter it’s not foreign to you.
Infliximab Biosimilars:
Inflectra (infliximab-dyyb)
Renflexis (infliximab-abda)
Avsola (infliximab-axxq)
Ixifi (infliximab-qbtx)
Zymfentra (infliximab-dyyb)
Adalimumab Biosimilars:
Amjevita (adalimumab-atto)
Cyltezo (adalimumab-adbm)
Abrilada (adalimumab-afzb)
Hadlima (adalimumab-bwwd)
Hulio (adalimumab-fkjp)
Hyrimoz (adalimumab-adaz)
Idacio (adalimumab-aacf)
Yuflyma (adalimumab-aaty)
Yusimry (adalimumab-aqvh)
Simlandi (adalimumab-ryvk)
Ustekinumab Biosimilars:
Wezlana (ustekinumab-auub)
Selarsdi (ustekinumab-aekn)
Otulfi (ustekinumab-aauz)
Imuldosa (ustekinumab-srlf)
Yesintek (ustekinumab-kfce)
Pyzchiva (ustekinumab-ttwe)
Steqeyma (ustekinumab-stba)
Important note: While these biosimilars have received FDA approval, the availability of some may be subject to patent litigation settlements or market launch agreements, potentially delaying their commercial availability.
Let’s look at the real-life numbers
While working on this article, I ran several polls on Instagram asking the IBD community about their personal experiences. Some of the findings surprised me:
Have you received a letter saying you have to switch? Of the 265 respondents, 64% of patients said “yes”, and 36% said “no”.
Did you appeal before switching to a biosimilar? Out of 200 responses, 33% responded “yes” and 67% responded “no”.
For those who switched was the transition seamless—or did you notice an uptick in symptoms? Of the 140 responses, 51% had a seamless transition and 49% noticed an uptick in symptoms. This right here speaks volumes.
If you responded poorly to your biosimilar and your GI appealed insurance, what was the outcome of the appeal? Out of 75 responses—38% of patients were denied, 32% were put back on the originator drug (biologic), and for 30% after multiple appeals they finally won and returned on their biologic.
Let’s hear directly from patients
Bre: “I was taken off Humira after the New Year and placed on Simlandi for my ulcerative colitis. I was nervous as I had just come out of a two-year flare and had finally found a drug that worked and even though I was reassured that this was as good as Humira, I still had my doubts. Thankfully, I have had a positive experience and have remained in remission since starting Simlandi in January. I hope this story helps others feel less afraid of the potential outcomes when they get the dreaded non-coverage letters.”
Kyrsten: “Back in April I was forced off Stelara to the biosimilar, Yesintek. I went into it with an open mind because my Crohn’s has been in remission for about a year and a half. Unfortunately, I am now experiencing more symptoms that I’m documenting and oral manifestations of Crohn’s and need to see an oral medicine doctor now.”
Stefanie: “I’ve had to switch biosimilars twice at this point, this second time, while I was pregnant. I’m doing just fine!”
Alexandra: “I was first afraid of Humira, then I grew into being afraid of not having it; so, when my insurance mandated the switch to Hyrimoz late last summer, I was so worried (as all are/were)! In September, I was starting to feel some symptoms pop in, so we did all the tests, which indicated that I was still in clinical remission. Thankfully, I am doing ok now with no issues.”
Christina: “It was first recommended to me by my GI a couple of months after diagnosis in 2021 to start on biologics, since the oral medications had stopped working for me. We collectively decided the best option for me would be Remicade, however when it was brought to my insurance company, they immediately denied it. Insurance said it wasn’t their “preferred method” and wanted me to try and fail Humira first. When my GI tried to get the Humira approved, my insurance company ended up denying that, too, and this time, their excuse was it “wasn’t medically necessary.” It took my GI a couple of months to get a biologic approved and I almost ended up back in the hospital as a result.”
After receiving her first injection, Christina ended up developing an allergic reaction and had to be switched to something else. After another month of fighting insurance, Christina’s GI was able to get Remicade approved.
Christina goes on to say, “I did very well on that for about a year, until my body developed antibodies, and I had to switch once again. I then started Entyvio infusions which I have been on ever since, and so far, I’ve been doing well on it.”
Audrey: “I was forced to switch from Remicade to Inflectra a few years ago due to insurance coverage. My job at the time was horribly stressful and very time-consuming and getting the news then about my medication no longer being covered and that my next infusion was delayed because of this change over the phone from my infusion clinic was terrible. I remember sitting in the workplace cafeteria when my phone rang, and I burst into tears and was pleading with the pharmacist that gave me the news prior to receiving the letter.”
At this point, Audrey was receiving Remicade every seven weeks. With the delay and having to wait for Inflectra to be shipped, she was pushed out an extra week.
“The thing that made me so angry, was that I had already received my Remicade shipment, the nurses just weren’t allowed to mix and dispense it because of the insurance change. I refused to toss that Remicade dose until the vials expired, since I knew how costly it was. I called so many charity pharmacies for low-income folks to see if they could take the vials and since its temperature controlled, they couldn’t. Such a waste,” said Audrey.
Thankfully, Audrey tells me she hasn’t had any issues with the switch, and she’s stayed in remission—even during and after her first pregnancy. But she says the stress and frustration that occurred impacted her mental health at the time.
Kelly: “I just got the letter. Been on Stelara since 2017. I also take it every four weeks, even though the recommended dose is every eight weeks. I get my insurance through my husband and our insurance turns over on 6/31/25. The new policy begins July 1st. I’m really concerned and honestly don’t want to deal with this.”
Sandi: “I was forced to change from Remicade that had me in remission for several years to Inflectra and the outcome was not good. I had multiple Crohn’s flares a month, which was not happening when I was in remission. My GI appealed and after a year, insurance started to cover my Remicade again. Since getting back on Remicade, I’m in deep remission, again.”
Britt: “I was diagnosed with Crohn’s in 2011 at the same time I was diagnosed with Primary Sclerosing Cholangitis (PSC), a rare liver disease. I was on Remicade and was switched to Avsola. For a while, I was quite skeptical, but we stayed the course. I had some ups and downs with my health, but I was just told I am in histological remission by my GI! After five years of struggles to find the right medication, my health finally seems to have aligned. I also take 6mp to reduce antibody development to the Avsola.
Danielle: “I went into my pregnancy in remission and my first and second trimesters were lovely. About halfway through my pregnancy, insurance decided it was the right time to swap my medications. Two weeks following that change, I was already struggling. I ended up finishing my pregnancy on two different rounds of methotrexate and iron infusions. I had a scheduled C-section at 39 weeks, and I think my care team hoped that my body was just struggling balancing pregnancy and Crohn’s…that was not the case at all.”
Danielle says she tried two more Inflectra infusions after her daughter was born and saw no improvement. She required a round of prednisone and that didn’t help either. She was then switched to Humira injections every two weeks and they seemed to work wonderfully and she started to feel better.
“Then my insurance threatened to switch me to a Humira biosimilar, but Humira failed me right when that was supposed to happen, so I was transitioned to Entyvio. For six months I saw no improvement on Entyvio…more prednisone and still NO improvement. Finally when my daughter was 14 months old (so over a year and a half of feeling like absolute garbage and having no energy) I got bowel resection surgery and switched to Stelara.”
Danielle went on to say she’s been in remission since December 2021, and she still wonders if switching to the Remicade biosimilar caused all this to happen.
“I truly feel like that change took part of the joy of pregnancy away from me and also took a lot of special time away from my daughter the first 14 months of her life. I spent her second Christmas in the hospital unable to see her for two weeks. I was on so many pain medications for so long before the surgery that I don’t remember her first birthday. I lost a lot simply because someone was trying to cut costs and making decisions they are not educated about.”
Brooke: “I was on Remicade for 15 years, then I was forced to switch to Inflectra. I was incredibly stressed and tried to appeal but lost that battle. I’ve now been on Inflectra for 3 years and I am doing well! I still hate that we are forced to change when something is going well. The amount of stress, anxiety, and time I spent fighting the insurance company took a toll on me.”
Brooke went on to say that she got pregnant and had a daughter while on Inflectra. Her GI and OB had no concerns with the biosimilar during pregnancy.
Maya: “At the beginning of March, I was told by my insurance that Stelara will no longer be covered and that I would be put on Yesintek. I’ve only gotten one dose of it so far, but I very much empathize with all the emotions that come with getting the letter. So far, I haven’t noticed any additional symptoms or changes in how I feel. I’m hoping Yesintek works for me and that I continue to feel ok!”
Maria: “I live in Sweden where Humira is covered by the State since no private insurance is needed, the last year though I was recommended from doctors to switch to a biosimilar. So, in autumn of last year, I decided to try Hyrimoz. I noticed no difference in the first three months, but after that, I saw an increase in symptoms, especially for my rheumatoid arthritis. My doctor recommended that I take the injection weekly instead of biweekly, but that didn’t help at all. Since I haven’t developed any antibodies, my doctor switched me back to Humira and I felt the difference right away.”
Sadly, Maria recently got the news that Humira will no longer be covered in Sweden starting in August, so she will either have to pay out of pocket or find another medication.
“You can imagine how that feels. Humira has been my trusted friend since 2008, managing my Crohn’s and RA so well. Hard to think of life without it,” Maria said with a tearful emoji.
Kenzie: “I’ve been on two different biosimilars of Remicade. Inflectra was seamless—no issues. Then, a few years later, I got new insurance, and they made me switch to Avsola, which I had an allergic reaction to. No allergic reactions to Remicade or Inflectra, after being on them for more than six years. Now I’m on Cimzia injections (not a biosimilar) because it’s safe for nursing and that just seemed like the better option for me right now. I’ve only been on Cimzia for 10 weeks, but so far, my Crohn’s and RA seem slightly better.”
Audrey: “I switched to a biosimilar (Inflectra) in January 2022. I got pregnant in June 2024 and delivered a healthy baby boy this March. No disease issues thus far.”
Tara: “I was on a biosimilar when I conceived and throughout my entire pregnancy. I’m on Hulio and everything went well. I stayed in remission throughout the pregnancy and postpartum.”
Amanda: “I was able to conceive and am currently pregnant on a biosimilar. Everything is going great, thankfully I was on Humira for about six years and then got the dreaded letter to switch. I went on Hyrimoz at the end of last summer and was on it for five months prior to getting pregnant.”
Lauren: “I conceived and was pregnant with my now 3-week-old all while on Inflectra. I stayed in remission the whole time.”
Katie: “I was able to conceive while on Avsola, a biosimilar to Remicade. I haven’t experienced any issues related to pregnancy. I did develop some antibodies though and had to escalate my dose while pregnant. I also take premeds of Solumedrol and Benadryl before every infusion now. I got hives during the Avsola infusion while I was pregnant.”
Erica: “My doctor wouldn’t appeal it. I was put on Amjevita. Thank goodness and knock on alllll the wood…it’s been going well. I haven’t noticed any difference in symptoms. It’s been a little over a month, so I pray it stays that way.”
Jessica: “Conceived and pregnant on Inflectra infusions. I just had a healthy baby girl one month ago, and I’m now breastfeeding. No problems at all.”
Marla: “I switched to Hyrimoz while pregnant and I did not notice a change. However, I will say I’ve been in remission since getting pregnant with my first child and I don’t always take my medicine on time, so I don’t know if the transition was seamless because the medicine is truly fine or if it’s because my body just does well while I’m pregnant and breastfeeding (which I basically have been the past four years having three babies). I will say it’s an ABSOLUTE nightmare trying to get my medication each month. Constant bills I’m having to fight and constant new prescriptions and prior auths from my doctor for the SAME medication. It’s literally unreal. I blame that on CVS Specialty pharmacy.”
Amanda: “While I was pregnant, my OB appealed because insurance would no longer cover my Delzicol for ulcerative colitis. I won but was only allowed to stay on it until I delivered, then I had to switch to a generic mesalamine.”
Christine: “Pregnancy is what got me a temporary appeal. Once the baby was born, I had to switch, but it was peace of mind not having to make the transition during pregnancy. I was anxious that it was just a regular infusion, there wasn’t a loading dose or a slow rate or anything. They just infused the Inflectra the same way they infused the Infliximab. About two years after making the switch, I had to go from every 7 weeks to every 6, but I will never know if it was due to the biosimilar or if after 10 years on a biologic/biosimilar, my body just needed the drug at more regular intervals.”
Danielle: “I was pregnant (in remission), and my GI decided that was the correct time to switch me to Inflectra from Remicade…it did NOT go well.”
Jordyn: “I found out I was pregnant around the same time I had my first biosimilar infusion. I went through my whole pregnancy on the biosimilar and only noticed an uptick in symptoms around 10ish weeks, which a course of steroid foam resolved. Postpartum is when I noticed the return of symptoms the most. After 2 or 3 infusions (I get them every 4 weeks) with no improvement, I asked for an appeal, and it was granted for me to go back on Remicade.”
Natalie: “I got pregnant the month after switching to Avsola. I made the switch November 2022 to the biosimilar and found out I was pregnant December 29th. Pregnancy went fine, delivered in August 2023, all my problems started in February 2024. I went back on Remicade at that point because my GI suspected I had serum sickness for months on end, and to this day, they still aren’t sure if the serum sickness initiated my problem of Crohn’s attacking my joints.”
Angie: “We were told we would have to switch, but the doctor office contacted them, and they will be covering me at least until September for Humira…then we will renew the prescription and hope that it will be covered, again.”
Jasmine: “I’m on Avsola (biosimilar for Remicade) and I wasn’t trying to get pregnant, but did, and had a perfectly healthy pregnancy.”
Allie: “My specialists appealed saying I was going through fertility treatments and then insurance approved my Remicade for another year.”
Malea: “I got my insurance letter recently and have been meaning to reach out as I remember your Humira nightmare. I have not appealed yet, partly because my GI office is incredibly dysfunctional and hard to get ahold of. I am on Stelara, which is the first thing to have kept my Crohn’s in remission and they want me to switch to Selarsdi, which I can not find any patient experiences/anecdotal evidence about.”
Georgia: “I was on Humira last summer when Accredo tried to switch me to a biosimilar without notification. I had a letter saying that my Humira was still covered. I worked with my GI who told me they are seeing this a lot and if the person doesn’t push back, they just switch them to a biosimilar. But, if the person pushes back, the GI calls Accredo with a code (DW1 Brand Medically Necessary) to block it. That’s what I did, and they therefore had to send me my Humira since my insurance was still covering it. I want to let others know in case they have a prior authorization from their insurance saying they will cover Humira, despite the pharmacy trying to switch them!”
Jessica: “I so appreciate you talking about this. For my daughter, I went to refill her Humira, and insurance said the doctor allowed the switch. I asked the doctor, and they said no…it’s insurance. I had to use one of my daughter’s biosimilar pens while mine was being shipped, and I noticed more pain and burning. I advocated for my daughter to be on brand name only and they approved the request. When it came to my biologic, my letter had the same wording and once again it was insurance, not my doctor.”
Jessica’s GI said despite her being in remission for so long, she would need to try the biosimilar, then if any symptoms occurred then they could fight for return to the originator drug.
The Emotional Toll of a Forced Switch
For many patients, switching medications, especially after long-term remission, can trigger anxiety, mistrust, and a profound sense of vulnerability. Here are a few of the emotional and psychological responses patients may face:
Fear of Flare-ups: Patients often fear that a new medication might not work as well, risking disease recurrence and potentially hospitalization. So many of us have been relying on our biologic as a crutch for several years if not decades, it’s worrisome when you find a medication that works and have to change simply because insurance decides it’s necessary.
Loss of Control: Being told to switch due to non-medical reasons (like insurance mandates) can feel disempowering.
Medical Trauma: Those who’ve experienced years of instability before finding an effective treatment may associate medication changes with setbacks and suffering.
Distrust in the System: Patients may feel like financial decisions are being prioritized over their health and well-being.
How to Comfort and Support Patients Through the Transition
Healthcare providers and care teams play a critical role in guiding patients through these difficult changes. Here are some key strategies to help:
Educate With Compassion: Clearly explain what biosimilars are, how they’re tested, and what the current evidence says about their safety and effectiveness in IBD. Emphasize that switching is based on clinical research and real-world data, not just cost. Have discussions about biosimilars with patients in clinic even if they haven’t received a letter in the mail yet so they are prepared.
Validate Their Concerns: Avoid minimizing fears. Instead, acknowledge them openly. Saying, “I understand why you’re anxious about this” creates space for honest discussion and trust-building.
Advocate When Necessary: If a patient is stable and deeply concerned about switching, advocate on their behalf. Some payers allow exemptions if a provider makes a strong clinical case for staying on the original biologic. It may take extra paperwork, but the effort can mean everything to the patient, especially for pediatric patients and women who have family planning considerations.
Encourage Peer Support: Connecting patients with others who have made similar transitions can provide reassurance and reduce feelings of isolation. Patient communities, both online and in-person, can be powerful.
Navigating the Complexity of Informed Consent
True informed consent means patients understand not just the science, but the context of their decision. It’s more than ticking a box—it’s about creating space for dialogue, questions, and partnership. When I received the letter saying Humira would no longer be covered, I alerted my GI team not to sign the new script, as that gives the pharmacy/insurance the ability to switch you. A biosimilar is not able to be prescribed until your doctor signs off on it, remember that.
A thoughtful approach might involve:
Discuss what will happen if symptoms worsen after switching. My GI called me multiple times to comfort me and even prescribed a couple of Xanax pills to ease my anxiety leading up to the switch.
Review the process for switching back (if possible). Have a game plan in place so you’re not scrambling if you notice a change in your health.
Ensure patients know they won’t be left to manage complications alone. Support every step of the way makes all the difference.
Research articles to help you feel informed about biosimilars
An informed patient is an empowered patient. I did some research to help do the homework for you. By reading the articles below you should feel better educated on biosimilars so you feel more comfortable with the switch (if it’s a necessity) and about discussing this further with your care team:
Switching from a biologic to a biosimilar can feel like stepping into the unknown—but it doesn’t have to be done in fear or isolation. With transparency, empathy, and collaboration, patients can be empowered to make informed decisions, feel supported during the process, and maintain confidence in their care.
While some people feel more confident switching from a biologic to a different drug class (for example, Humira to Skyrizi or Stelara to Entyvio) to dodge the biosimilar, others are fearful of building up antibodies to a drug class that is otherwise working. You must weigh the pros and cons and do what you feel most comfortable doing. It’s important to remember it’s only a matter of time until all biologics for IBD have biosimilars, so by switching drug classes you are most likely just delaying the inevitable.
If you are planning to become pregnant or you are currently pregnant and on a biologic or a biosimilar please check out the PIANO registry so you can help pave the way for future IBD families and contribute to research so we have more information about the safety of these medications in pregnancy.
The science behind biosimilars is promising. But the human side of medicine—the fear, uncertainty, and trust involved in change, must be just as carefully managed. I hope after reading this article you feel less alone and supported in your personal health decisions.
Polycystic Ovary Syndrome (PCOS) and Inflammatory Bowel Disease (IBD) are two conditions that can significantly affect a woman’s health, but many may not realize that there is a potential connection between the two. While they are distinct in their nature, the relationship between PCOS and IBD may be more intricate than previously thought. Living with both makes for a complicated patient journey and is not talked about enough.
This week on Lights, Camera, Crohn’s we look at these conditions, how they influence one another, and hear from several women in the chronic illness community who experience both.
What is Polycystic Ovary Syndrome (PCOS)?
If you’re reading this, chances are you are aware of what IBD is, but PCOS may be more of a mystery to you. PCOS is a hormonal disorder that affects the ovaries, typically during the reproductive years. It’s characterized by irregular periods, excess androgen levels (leading to symptoms like acne, excessive hair growth on parts of the body where hair is normally minimal, scalp thinning), and the presence of multiple small cysts in the ovaries. PCOS is linked to insulin resistance, obesity, and an increased risk of developing type 2 diabetes, heart disease, and endometrial cancer and impacts 1 in 10 women who are childbearing age.
The precise cause of PCOS is still not fully understood, but genetic factors and lifestyle choices (such as diet and exercise) play a significant role.
The Shared Link: Inflammation
Both PCOS and IBD are associated with chronic inflammation. This is a key factor that may connect the two conditions.
Chronic Low-Grade Inflammation in PCOS
Research has shown that women with PCOS often have increased levels of inflammatory markers, such as C-reactive protein (CRP). This chronic low-grade inflammation can affect the entire body and is linked to metabolic dysfunctions like insulin resistance and obesity, both of which are common in PCOS. Inflammation in PCOS can also exacerbate other symptoms, such as ovarian dysfunction and difficulty managing weight.
Inflammation in IBD
On the other hand, IBD is fundamentally a disease of chronic inflammation. The immune system mistakenly attacks the lining of the digestive tract, leading to the symptoms of Crohn’s disease or ulcerative colitis. This ongoing inflammation can lead to gut permeability issues, nutritional deficiencies, and an altered gut microbiome. The inflammatory process in IBD is often more severe and widespread than in PCOS, but the principle of chronic, low-grade inflammation links the two conditions.
How Might Inflammation Link IBD and PCOS?
Though PCOS primarily affects the reproductive system and IBD affects the gastrointestinal system, both conditions share inflammation as a common underlying feature. Inflammation in one part of the body can exacerbate the other condition, making both difficult to manage at one time.
Here are a few ways in which inflammation might connect these two diseases:
Gut Microbiome Imbalance: Both IBD and PCOS have been shown to be influenced by imbalances in the gut microbiome. In IBD, the gut bacteria are disrupted, contributing to inflammation and disease progression. Emerging research suggests that women with PCOS also exhibit gut dysbiosis, which could worsen the inflammatory profile in the body. This imbalance may be a link that exacerbates both conditions, potentially influencing the development and progression of each.
Immune System Dysfunction: Both PCOS and IBD involve immune system dysfunction. In PCOS, the immune system may not properly regulate inflammation, contributing to insulin resistance and ovarian dysfunction. Similarly, in IBD, the immune system is dysregulated, resulting in chronic inflammation in the GI tract. A common immune pathway may contribute to the co-occurrence of these conditions in some individuals.
Hormonal Imbalances: Inflammation in PCOS can lead to hormonal imbalances that impact not only the reproductive system but also other systems in the body. Conversely, chronic inflammation in IBD may affect hormone levels, potentially exacerbating PCOS symptoms. For example, inflammatory cytokines may interfere with the normal balance of estrogen and progesterone, further complicating reproductive health.
Metabolic Dysfunction: Both PCOS and IBD are associated with metabolic issues, such as insulin resistance. Insulin resistance often goes hand-in-hand with chronic low-grade inflammation in both conditions, and this can make the management of both diseases more challenging. Insulin resistance can worsen inflammation, and inflammation can increase the likelihood of developing insulin resistance, creating a vicious cycle.
Medication Overlap: Some medications used to treat IBD, such as corticosteroids, can also exacerbate symptoms of PCOS, especially in terms of weight gain, insulin resistance, and hormonal imbalance. Conversely, treatments for PCOS, such as oral contraceptives and anti-androgen drugs, may have side effects that impact gut health, potentially influencing the course of IBD.
Managing the Dual Diagnosis
For those dealing with both PCOS and IBD, managing these two conditions simultaneously can be a delicate balancing act. Treatment plans need to address both the hormonal imbalances of PCOS and the inflammatory components of IBD.
Anti-inflammatory Diet: A diet rich in anti-inflammatory foods, such as fruits, vegetables, whole grains, and omega-3 fatty acids, may help reduce inflammation in both the gut and the reproductive system. A diet low in processed foods and sugar can also improve insulin sensitivity, which is crucial for managing PCOS.
Probiotics and Gut Health: Since both PCOS and IBD involve gut health disturbances, introducing probiotics or focusing on gut-healing strategies could help improve the balance of beneficial bacteria and reduce overall inflammation. However, the use of probiotics should be carefully monitored in IBD patients, as some may have adverse reactions during flare-ups. This is a conversation to have with your GI, as there are many differing opinions.
Medications and Monitoring: Medications for IBD (such as anti-inflammatory drugs or immunosuppressants) should be balanced with treatments for PCOS. A healthcare provider may consider the impact of one treatment on the other, as certain drugs could worsen either condition.
Physical Activity and Stress Management: Exercise can help with both insulin sensitivity and inflammation. Regular physical activity helps control weight and can reduce inflammatory markers in the body. Additionally, managing stress through mindfulness or relaxation techniques can also reduce inflammation and improve overall well-being.
The Patient Experience: Read Firsthand Accounts from Women with IBD and PCOS
When researching articles, one of my favorite parts of the writing process is to connect with patients who live the reality of the subject matter. Having the patient voice—people who are willing to share their firsthand experience to help others is priceless. Here is what women with both IBD and PCOS shared with me:
Kayla: “I am curious how many women with IBD also have PCOS because both my sister and I have it. I am getting put on Letrozole in a few weeks to helpfully get me to ovulate. I also have super high AMH which makes sense if I have PCOS, but it’s extremely high so I assume that also means a lot of eggs which also is the same for my sister. It’s crazy because my sister and I have led quite different lifestyles, but our health conditions have been nearly identical! I’m hoping to join the PIANO study soon after this round of medications.”
Sam: “Both PCOS and IBD affect my body and cause inflammation. It can be really tiring to deal with both. Also, there isn’t a cure for either one. Getting pregnant with both was interesting. I had to be in remission with my Crohn’s and then deal with trying to get pregnant which was difficult because of my PCOS. Family planning is extremely stressful with both conditions. I will say that an IUD and being on a GLP1 and infliximab infusions have helped keep my inflammation under control. I also feel like both are invisible diseases and people just dismiss them.”
Stephanie: “I was diagnosed with PCOS after coming off birth control for the first time in six years when I was 22. I was diagnosed with ulcerative colitis at age 26, nine months after having my first child. I never had any symptoms of uc prior to pregnancy and childbirth. My doctors say there is no correlation between both, but something that has been super interesting to me and my husband is the weight aspect…as you know with IBD there are many periods of time when you’re either using the bathroom 10+ times a day or even afraid to eat because of unknown outcomes, which causes many IBD patients to be underweight. But I’m the opposite. I gain weight during those periods and have a very hard time keeping the weight off with both diagnoses, which I chalk up to the PCOS causing insulin resistance (PCOS is often referred to as diabetes of the ovaries)…even though my labs don’t always show insulin resistance. It’s been extremely hard finding doctors who talk about other ways to help my PCOS without birth control.”
Stephanie also takes Metformin. She says both diagnoses come with their own challenges, but the PCOS diagnosis causes her more frustration since most of the suggestions are just to “lose weight” or take hormones to mask the symptoms of the disease. She is excited to see where the research on this topic and learn more about how the co-morbidities coincide between both diseases.
Jami: “I have IBD, diagnosed after four years of struggling through university (both my twin sister and I have Crohn’s disease). I had a major flare in 2015 and after a year of struggling I had surgery to remove my colon. I have an ileostomy and have had every surgery for Crohn’s since. Rectum removed. Stoma repairs, hernia repairs, fistulas, abscesses. I surprisingly got pregnant easily with my first daughter in 2019 after testing to ensure my surgeries did not disrupt my ability to conceive, but in 2021 I started to struggle to conceive and found out I had PCOS. I went to a fertility clinic to help to conceive my second child, and did not need IVF. Instead, I was given hormones and injections to help me ovulate properly and then I was on progesterone to help maintain the pregnancy for three months. If I’m being honest, I feel the C-vid vaccine screwed with my hormones. I don’t regret getting the vaccine as I’m immunocompromised from my biologic, but it was after the vaccines that my hormones were messed up and I started to have pain with my menstrual cycles (terrible cramping and awful breast pain before and during…which I never had before).”
Lindsey: “Crohn’s and PCOS here! I didn’t get diagnosed with PCOS until 2024 after trying to conceive for a couple of years. My only symptom is irregular cycles and multiple follicles on ultrasounds, so the diagnosis came as a shock to me.”
Gabby: “Living with Crohn’s is already a full-time job, but being diagnosed with PCOS added another complex layer. Both conditions affect my hormones, digestion, and inflammation—and often, managing one feels like it’s aggravating the other. PCOS makes it harder to control symptoms during Crohn’s flare-ups, and vice versa. I’ve learned to be incredible mindful of my diet, avoiding gluten and inflammatory foods to reduce triggers for both conditions. As a Latinx woman, one of the most frustrating things has been finding a way to manage my symptoms without feelings like I have to give up the foods that connect me to my culture. Traditional Cuban and Dominican dishes are rarely considered in medical diets or nutrition plans, and I’ve often felt overlooked in conversations about what’s “safe” to eat. But even with careful planning it’s not always enough.”
Gabby went on to say one of her biggest ongoing challenges is keeping her hormones balanced, especially during periods of high stress, something that often happens during a Crohn’s flare. She says stress tends to amplify both conditions, causing a domino effect of symptoms that can be physically and emotionally draining. Some days, she feels like she’s chasing balance that’s always out of reach.
Maddie: “My uc diagnosis came December 2012 when I was 14, wasn’t 8th grade such a fun year! I was put on mesalamine for the uc and birth control and spironolactone for my PCOS and didn’t have a second thought about either for 8.5 years, until I was 22 and my uc flared in June 2021. After the flare settled in July 2023, I stopped birth control a couple of months later to prepare to try to conceive after the six-month clearance. Stopping HBC didn’t impact my UC at all thankfully, which was a worry. We started TTC in April 2024 expecting it to take a while due to PCOS, but with a regular cycle, we conceived on the third cycle of trying in June 2024. We experienced a missed miscarriage where the baby stopped growing at 8 weeks, but we found out when I was supposed to be 10 weeks. After the miscarriage and D&C, I had a flare that lasted 4 months plus a 3-month waiting period before trying to conceive again.”
Maddie is thankful she was able to manage the flare with a course of budesonide. She did not need to switch maintenance medications.
“PCOS and uc are intertwined in this TTC journey, as PCOS unfortunately carries a higher miscarriage risk. Now that we know my body likely responds to loss and perhaps a full-term postpartum as well with a flare, it makes it much scarier of the risks of repeated losses and flares, and the worries of those make me worried about pregnancy-safe drug options, as well as the dangers of repeated/chronic inflammation on future health and cancer risks, and the worries of never being able to have a live birth or our ideal family size.”
Jenny: “Advocating for yourself is the first step towards healing, regardless of an individual’s situation. For years, I was told my Crohn’s disease and symptoms of PCOS were unrelated. It was a journey of perseverance towards confirming a diagnosis of PCOS and validation that the two are related. Trust your intuition, speak up, and never settle for answers that don’t feel right. Sometimes, the right doctors are the ones who truly listen—don’t be afraid to change your path until you find the care you deserve.
Jenny says it wasn’t until she had a female GI and a female gynecologist that she felt heard and understood. She says making that shift was pivotal in how she lived, improved her confidence, and her understanding of self-advocacy.
Final Thoughts
The relationship between IBD and PCOS is complex, but there are notable overlaps, especially in terms of chronic inflammation, immune system dysfunction, and metabolic disturbances. People with both conditions may face unique challenges, but understanding these shared pathways can help tailor treatments that address the root causes of inflammation and hormonal imbalances. Collaboration between healthcare providers across different specialties, such as gynecology, gastroenterology, and endocrinology, is essential to ensure comprehensive care for individuals managing both IBD and PCOS.
By recognizing these connections, we can better manage these conditions and improve the quality of life for those affected. While research appears to be limited regarding IBD and PCOS, there seemed to be a lot more discussion regarding Irritable Bowel Syndrome (IBS) and PCOS. I hope this article makes you feel seen, less alone, and empowered to discuss any health challenges that you may be experiencing but unsure of.
There’s breaking news in the IBD community—and I can’t wait to share it with you! I’m thrilled to announce the launch of a groundbreaking new website dedicated to empowering women with Inflammatory Bowel Disease (IBD) by providing them with the critical information they need about family planning, pregnancy, and postpartum. This resource is a direct follow-up from the recent Global Consensus Conference on IBD and Pregnancy, which brought together a world-renowned group of scholars, physicians, and patient advocates from around the globe to review all available science, share information, experiences, and insights in the hopes of offering helpful recommendations designed specifically for women with IBD.
This week on Lights, Camera, Crohn’s a look at the website which launched today (March 4, 2025) and what this means for the patient community, along with sentiments from the one and only Dr. Uma Mahadevan.
Empowering Women with Accurate, Consistent Information
Women with IBD often struggle with overwhelming misinformation and confusion when it comes to family planning and pregnancy. I can speak from firsthand experience as an IBD mom of three kids ages 7 and under. Up until recently, there have been a great deal of gray areas that make family planning extra stressful for those with Crohn’s disease or ulcerative colitis.
From varying recommendations by different healthcare providers to conflicting advice from different countries, the lack of a consistent message leaves many women uncertain and fearful about the health of both themselves and their pregnancies.
Dr. Uma Mahadevan, the Chair of the Global Consensus Conference and the primary investigator of the Pregnancy in IBD and Neonatal Outcomes (PIANO) study, highlights this issue, “Women with IBD suffer from so much misinformation and fear. Recommendations vary from provider to provider and country to country. That is why the Global Consensus brought together GI’s, teratologists, pharmacists, surgeons, etc., from around the world to come up with one guidance document for all patients to have a consistent message.”
The new website, which is translated in six different languages, aims to deliver just that—a unified, trusted source of guidance for women with IBD. With contributions from a multidisciplinary team of experts, the website consolidates the latest, evidence-based advice to help women navigate their pregnancy journey with confidence.
As the Patient Ambassador for the United States, I had a chance to see the work that went into this remarkable resource, and I must admit seeing the site brought tears to my eyes. I can’t tell you how fortunate we are to have this information and scientific research available. Our community has needed this for so many years—and now, the patient experience of navigating pregnancy with IBD will be transformed in the best way.
Visited the FDA with Dr. Mahadevan in July 2024 to share the latest guidance from the Global Consensus Conference.
Addressing the Fear of Stopping Medications
One of the most significant concerns among women with IBD during pregnancy is the fear of medication use. Dr. Mahadevan points out that the absence of consistent advice can lead to a dangerous default, “When there is no consistent message, often the fear default is to stop the meds, which can be harmful to the pregnancy – both mother and child.”
The website’s primary goal is to ensure that women understand the importance of continuing essential medications where necessary and how to work with their healthcare providers to safely manage their IBD during pregnancy. The risks of stopping treatment without proper guidance can negatively impact both the mother’s health and the health of the baby, so providing accurate, clear information is crucial.
As a woman on Humira since 2008, I remember how scared I felt about continuing my medication throughout my pregnancies, but I trusted my medical providers (gastroenterologist, maternal fetal medicine, and OB) and had flawless, symptom-free pregnancies because my disease was so well managed. Yes, it’s emotional when you’re 35 weeks pregnant and feel the baby kick as you’re about to inject medication into your body, but I always told myself that by keeping myself healthy, I was protecting my babies. I also found great comfort in participating in the PIANO study with my youngest and MotherToBaby pregnancy studies with my other two children.
Providing Confidence and Joy for Women
Dr. Mahadevan hopes this website and these materials will give women the confidence to move forward with their pregnancy with joy, not fear, and the strength to resist the misinformation.
The resources on the website are designed to reassure women that pregnancy with IBD is possible, and they can be proactive in ensuring their health and the health of their baby. With expert advice, personalized care options, and up-to-date research, the website offers a beacon of support for women navigating this journey.
What Inspires Dr. Mahadevan’s Work in IBD and Family Planning?
Dr. Mahadevan’s dedication to research in IBD and family planning is rooted in both her professional expertise and personal experience. As a leader in this field, she is driven by the desire to make a tangible difference in the lives of women facing IBD-related challenges. “The science around pregnancy is fascinating, and there are always so many new questions to study. However, the most important thing is that I personally know how hard it is to have a family, and I want to do what I can to help other women complete their families, as there is no greater joy!”
Her compassion and commitment to helping women with IBD fulfill their family dreams are at the heart of this new platform, which seeks to bring scientific clarity and emotional support to those who need it most.
A Call to Action for Women with IBD
The launch of this website marks a major step forward in supporting women with IBD who are considering family planning or navigating pregnancy. It is a space where women can find reliable information, connect with healthcare professionals, and feel empowered to make informed decisions that prioritize both their well-being and the well-being of their future children.
If you or someone you know is living with IBD and considering pregnancy, this website is a must-visit. Please help me in spreading the word so patients across the world are aware of the information available right at our fingertips. Together, we can break down the barriers of fear and misinformation, helping women move forward with confidence, joy, and support.
Visit pianostudy.org/GCC_video/ today to access the resources, expert advice, and community support you need to make informed decisions about your pregnancy with IBD.
Be a Part of PIANO
The PIANO Study is a powerful opportunity for women to get involved in this groundbreaking research that could help shape the future of healthcare for women living with IBD. By participating in this study, you can make a direct impact on understanding the unique experiences and challenges that women with IBD face.
Being part of this research gives you a voice in advancing medical science and contributing to discoveries that could improve the lives of countless women in the future. This is your chance to be a part of something bigger than yourself, to make a difference for others who share your experiences, and to support the next generation of women living with IBD. Together, we can pave the way for a healthier, more informed future. I’m so grateful that my youngest child is a part of PIANO and that we’re contributing to the amazing research that is going on.
Many women with Crohn’s disease or ulcerative colitis are diagnosed during peak childbearing years. Despite ongoing advances and strides in research, many questions remain about female fertility as it relates to IBD. This inspired Dr. Marla Dubinsky, MD and Dr. Zoë Gottlieb, MD at Mount Sinai Hospital in New York and Dr.Eugenia Shmidt, MD at the University of Minnesota to create The Women with Inflammatory Bowel Disease and Motherhood (WIsDoM) study. Since launching at Mount Sinai and the University of Minnesota in 2023 about 170 women with IBD have participated, and thanks to a generous grant from the Helmsley Charitable Trust, WIsDoM will continue to enroll participants until the end of August 2025. The goal—to enroll about 500 women across the United States and Canada by the end of next summer.
This week on Lights, Camera, Crohn’s we hear from these leading trailblazers in the IBD field to learn more about their aspirations for this monumental research study and how you can get involved.
The inspiration behind WIsDoM
Dr. Dubinsky and Dr. Gottlieb tell me they care for hundreds of women with IBD who are considering pregnancy, including those with a history of IBD-related surgeries.
“These women, along with their partners and families, often ask how their IBD or surgical history might affect fertility. Unfortunately, the available research on this topic is limited. Much of it comes from retrospective surveys or large database studies, which fail to give us a complete picture,” says Dr. Dubinsky. “Additionally, most of the existing data focuses on women who’ve had open J-pouch surgery for ulcerative colitis; given that many IBD surgeries, including J-pouches, are now done laparoscopically, this information is often not relevant to our current patients.”
They recognized the need for more comprehensive, up-to-date data to help answer these important questions to allow them to provide the best possible guidance for family planning to their IBD patients.
“Unlike previous research, WIsDoM gathers detailed, long-term data, allowing us to better understand the impact of IBD on reproductive health and identify potential risk factors impacting fertility in this population,” Dr. Dubinsky explains.
Main questions about female fertility and IBD that remain
We currently have limited information on how most IBD surgeries, other than open J-pouch surgery, may affect female fertility.
“Many of our patients with IBD have undergone other types of surgery, such as subtotal colectomy or small bowel resection, but we don’t yet know how these procedures might impact fertility. In addition, there is very little data on how other factors—such as the type of IBD, medications, the length of time someone has had the disease, other health conditions, family history, or sexual health—could influence fertility. Our goal is to give women a thorough understanding of how their IBD, along with their overall medical, social, and reproductive histories, might affect their ability to become pregnant,” Dr. Gottlieb says.
Who can participate in the WIsDoM study?
You must be:
A woman with IBD
Aged 18 to 45 years old
Planning to become pregnant in the next 15 months
Able to consent to participation
Live in the United States or Canada
Click here to hear from Dr. Dubinsky and Dr. Gottlieb firsthand.
What does participation involve?
When women join the study, they will be asked to complete an initial questionnaire that covers their IBD, surgical, medical, reproductive, sexual, and social histories. This will be the longest form you need to fill out and may take about 15 to 30 minutes, depending on your individual experiences. After completing the form, participants will receive a $50 gift card. You will also be asked to help obtain some of their medical records so additional information can be gathered about your health history.
“Once they are enrolled, participants will receive a survey each month. In this survey, they’ll be asked whether they’ve tried to conceive, whether they became pregnant, and if there have been any changes in their IBD, surgical, or reproductive health since the last survey,” says Dr. Gottlieb. “They’ll also be asked to describe their IBD symptoms, including whether they’re experiencing a flare-up or if their condition is well controlled. Participants will continue to receive these surveys monthly until they reach 12 weeks of pregnancy or until the study ends in July 2027, unless they choose to opt out.”
When the study ends (either at 12 weeks of pregnancy or the study’s conclusion), participants will receive an additional $50 gift card. If you become pregnant and experience a pregnancy loss, or if you become pregnant, have a baby, and wish to try for another pregnancy during the study period, you can re-enroll and continue participating.
Being proactive with family planning
When women and their families have a clear understanding of how their IBD, surgical, and medical histories may affect fertility—based on comprehensive, real-world data—they can make informed decisions about seeking fertility help sooner.
“This early guidance can help them get the support they need during the family planning process and avoid unnecessary delays in trying to conceive naturally if it seems unlikely to be successful. At the same time, it will also allow us to reassure some women that their fertility is likely to be similar to that of women in the general population, helping them avoid the financial burden of fertility treatments until they truly need them,” says Dr. Dubinsky.
Final thoughts
Through WIsDoM, we have a unique opportunity to make a meaningful difference in how women with IBD receive guidance about pregnancy and family planning. By gathering important data over time and using this to predict a patient’s risk of reduced- or infertility, medical providers can offer early support, including information on how surgery might affect fertility before a patient undergoes an operation.
“We hope that our findings will help change how healthcare providers support women with IBD when it comes to fertility, especially in terms of knowing when to refer patients to a fertility specialist. Currently, there are few clear guidelines on when to make these referrals, and we believe that, too often, we wait too long to offer women the support they need to conceive,” says Dr. Gottlieb. “This delay can impact their family planning and create unnecessary emotional and financial stress. Our goal is to use the data we gather to develop a risk calculator that will help us assess each patient’s individual risk for fertility issues, allowing us to refer them to the right resources earlier and give them the best chance to become pregnant successfully.”
Every patient deserves the most accurate and evidence-based information to make informed decisions about their family planning, and the hope is that WIsDoM will provide this valuable insight for women with IBD. As an IBD mom of three following bowel resection surgery, knowing that research like this is underway for current and future families does my heart good. By participating in IBD studies like WIsDoM, you help paint a clearer picture for how patients and families can be most supported during family planning and beyond.
Interested in learning more about WIsDoM and getting involved:
If you’re a young girl or woman diagnosed with a chronic illness, prior or during your “childbearing” years, chances are you or your parents may wonder what this means for your future family. When I was diagnosed with Crohn’s disease at age 21 in 2005, the thought of settling down and having kids was not on the radar but ever since I was a little girl I always aspired to be a mom. Fast forward to 2008, I was hospitalized for an abscess and taken off Mesalamine and put on a biologic injection (Humira). I can still picture the discussion with my GI. My mom sitting on the couch alongside the hospital window, looking at me wide-eyed, and us wondering if I’d ever be able to have children on my new medication. A medication I was told I’d be on for the rest of my life. I was 24. Back then there was nowhere near the research or guidance available like we have today.
August 2008-One month after starting Humira and on heavy duty steroids.
It was the first time I really began to question and worry about whether I’d physically be able to be a mom. As the flare ups, ER visits, hospitalizations, and tests persisted for years, I honestly didn’t have the energy to think about what my life would look like down the road, I only had the energy to focus on what was going on in that moment. I was not a patient advocate and looking back I was a bit naïve and uneducated about what it meant to have not reached remission.
When I met my husband in 2013, little did we know that for the next two years I would be at my sickest. What we did know—is that we both wanted kids one day. After my third bowel obstruction hospitalization in 15 months, I needed bowel resection surgery in August 2015, which FINALLY put me into surgical remission. Ironically, I was engaged to be married. Babies were on the brain. Since I lived a decade without remission, we knew we were going to have to try for a baby as soon as we got married, as remission can be fleeting. At 32 years old, I didn’t want to take any chances.
A lot has happened since we got married. We got pregnant a month after getting married. Lost our second baby around 7 weeks. And then had our rainbow baby in 2019 and our caboose of the family in 2021. If you’ve followed my advocacy and blog, you know I’m passionate about showing all that’s possible despite your IBD. I know each of our journeys is incredibly intricate and unique, each of us deals with our own set of challenges. But I also know that my younger self would have benefited immensely from seeing and hearing fellow women who’ve been there and done it and have families to show for it despite their chronic illness.
This week on Lights, Camera, Crohn’s we hear from several IBD moms—with kids ranging from newborn age to now adults—who offer amazing perspective that I hope will make you feel comfort in what the future could hold for you.
What IBD moms want you to know
Jennifer: “It’s 100000000 percent worth it! And be honest with your kids and spouse about how you are feeling and what you are going through. Of course, make it age appropriate, but they need to know the struggle.”
Liz: “Your kids will learn their limits and love on you when you need rest. It’s ok to go slow. Even if you flare after birth, you will come out of it.”
Amber: “I would tell a younger me that my body WAS capable of carrying and delivering healthy BIG (lol) babies. After struggling with fertility and then conceiving twins and carrying them full-term, I realized my body hadn’t failed me (how I think so many of us with IBD feel. Motherhood is possible for us and thank you Natalie for reminding us of that.”
“Find your people and be honest with them about how you are doing. Don’t ever feel bad asking for help. It truly takes a village to help.”
Brooke: “One day, you will be better. One day, you will coach little league and make the playoffs. One day, you will work on Capitol Hill. One day, you will live in another country. One day, you will be the best mom and you will thrive through IBD. You’re almost there!”
Jaime: “I would tell my younger self that fertility is not something you take for granted especially with a chronic inflammatory disease that can leave you prone to developing scar tissue. I’d also tell her that IBD may make life hard for awhile but with the right doctors, life will improve and the family you dreamed of having will happen.”
Jessica: “Motherhood is hard. It’s ever harder when you have an illness. It’s ok to rest when needed without feeling guilty.”
Kaitlyn: “Your kiddos are more resilient and adaptable than you think they are. I had a major flare about 7 months after my son was born. I put off being admitted to the hospital for weeks because I was so scared and felt guilty for leaving my baby and thinking he would feel abandoned without any way to explain to him that I was gone. He ended up having a blast with my husband for a week and I finally was able to achieve some sense of relief (slowly coming out of that flare, but there is a light at the end of the tunnel). Also, you’re not a bad mom for not being able to do the things you think you should be able to do (Spoiler Alert: Your baby doesn’t know other moms take their babies on long walks around the park and don’t have to drag you into every public bathroom you pass while running errands).”
Patti: “You only get one chance to raise your babies, so don’t sweat the small stuff. And frequently remind yourself (on the roughest days) that you really ARE doing the absolute best you can…and that is OKAY.”
Alyssa: “Sometimes you’ll be holding your baby on the toilet, but you’ll be okay, and your baby will be okay. The road will be tough, but so worth it. Some days the kids will watch more TV than you want, but you must take care of yourself too so you can be present for them. They’re resilient and will love you no matter what.”
Ally: “Rest when you can! Your body will most likely go into remission once pregnant so not need to get scared or nervous about it.”
Liv: “Make yourself and your health a priority. I went into a huge flare after having my first baby because I was SO focused on her and not eating properly or showering or taking care of me. Meal prep to make the mental load of eating easier! And ask for help!”
Patra: “Don’t be so hard on yourself when you feel the need to rest.”
Phoebe: “I would tell her to follow Natalie Hayden’s blog and IG account (haha)…seriously though, when I see you and other people share about their pregnancies and family life, it gave me hope to have my child. I would also tell my younger self it’s ok if you’re a mom with chronic illness! My younger self assumed I had to have a perfectly healthy body to have babies and raise babies.”
“Take care of yourself, even if it means asking your loved ones to look for signs of your anxiety and exhaustion that you may just be trying to push through or ignore.”
Jenni: “I would tell myself not to be so hard on myself. I would say don’t take on all the sick mom guilt. To let them watch movies and eat cereal without stressing about it when I wasn’t feeling well. I would also say…you don’t have to pretend to be brave all the time. It’s ok for them to see you cry or feel frustrated or be sick. They can handle it, and it is creating such strong, caring, empathetic humans!”
Courtney: “I would tell my younger self that I am enough for my kids and that they will be better people because of what they learn and see.”
Mallory: “Your children are strong, and they understand that it’s not your fault.”
Meg: “You did the right thing by staying on your meds through pregnancy and your baby is perfect.”
Kelly: “You are enough. Don’t feel like you’re not able to be as great of a mom as a healthy mom is.”
Ryann: “All you need is love. While I’m sure my son loves the active days when we’re doing lots of activities, he’ll be fine on the days that I’m laying down on the couch as long as I show him love.”
Rachel: “You’re stronger than you know, and everything will work out no matter what happens.”
Amanda: “Not to let fear of the “whatifs” cripple you.”
Brenda: “You will do great and be sure to find a selfless hands-on partner.”
Kristin: “Give yourself some grace. I didn’t get diagnosed or have any Crohn’s issues until my son was 15 months old. The symptoms came on like wildfire and it took a village to help until I figured it all out.”
Anna: “I want to jump in this convo as a 50 year old who wanted to be a mom, but due to the severity of my disease (diagnosed at 18), was told at 29 to have children by 35 due to being high risk and at 34, I was told not to carry due to complications and unfortunately adoption was not in my future as a single woman with severe illness no another option (freezing eggs, etc.) at that point in time. I feel like that is the MAIN thing Crohn’s stole from me! After many years of therapy, I cope with it very well now; however, I still from time to time mourn not being able to have children that aren’t four-legged…#dogmama!”
Courtney: “I would tell my younger self not to worry about having to use the bathroom urgently so much and that you’ll be carrying around diapers, wipes, and a little potty in your car for years. Your kids will also be able to relate to having accidents. I would all tell her that fertility declines a lot faster for people with chronic inflammation and to get your AMH levels checked early. Or think about freezing embryos if you want a big family in your mid to late thirties. Lastly, that breastfeeding won’t stop your kid from having IBD, so don’t worry about giving them formula.”
Ashley: “So, one time I posted on Reddit about how I have ulcerative colitis and didn’t know if I should have kids…I got a lot of responses. I got 56 that told me not to do it. How they were miserable. Or how their mom had it and they suffered as a kid. It was honestly traumatizing. And int that moment, I made the decision not to have kids.”
Tricia: “There will be some really tough days with your illness, and trying to take care of your kids, but you’ll get through this, and better days are ahead.”
Shannon: “Nap when the baby naps is legit. But also, when the baby is 12, you’re still going to need to take a nap. And that’s okay. It doesn’t make you less than because your body requires rest and reset. It is productive to take a nap if it’s necessary.”
Chanel: “That this chronic illness has a direct effect on pregnancy. Having this disease since 7 years old, no doctors ever thought it would be helpful to mention how important being in remission was before getting pregnant or trying for a baby until I was 26 years old and happened to nonchalantly mention to my doctor at the time that we were going to start trying.”
Jennifer: “Don’t worry! You will be blessed with two beautiful children and IBD will not define who you are and will not hold you back from anything!”
Stephanie: “Be easy on yourself and don’t put high expectations on yourself. It will all be worth it. Take it a day at a time and do what you need to do to feel better. Your kids will learn and be more empathetic and compassionate people for it.”
Bhavna: “It’s going to be hard. More emotionally than physically. You will even doubt whether you should have kids for fear of passing it on. I know eventually I did. My daughter now has an autoimmune condition. But despite all of this, you will make it through. Stronger. Resilient. Sometimes a tad sadder.”
Rosanne: “Kids are more resilient than you think. Motherhood is worth having to potentially miss a few things because of a flare or a difficult day. Your kids will understand and be stronger because of it.”
Pie: “Mum guilt will chew you up on the days that you can’t get out of bed. It’s okay, your little one will grow up to be empathetic and understanding of others.”
Amy: “I was completely well for the 8 years I was pregnant and breastfeeding my three boys. Almost a year after finishing feeding my youngest, I immediately went into a massive flare and have not managed to recover yet (10 months now). I felt betrayed all over again by my body, just at the time when I needed it to be strong. I would tell her that the most important thing is that you’re well, so that you can be the best version of yourself. Children are beautiful, they will take you exactly as you. Try to follow their lead. You are enough. They will forget at times you were absent due to resting, appointments, etc. But they will remember how hard you fought for your health. My middle school boy now seems to be suffering with gastro issues and it’s essential to me that I show him that I have the disease, it does not have me (enough though some days that doesn’t quite work out).”
Megan: “Some days are hard, but you can do it! You will be shocked at how much compassion it gives your children. They understand “mommy doesn’t feel well” at such an early age and really want to help take care of us. Vivi asks me daily, “Mommy, does your belly hurt today?” and says, “I’ll take care of you, Mommy.”
Kara: “Don’t forget to take care of you before it’s too late! You are doing your best and your children will only remember that later. My kids are 8 & 10 now, but when I was pregnant with my youngest, I went into a flare and refused to tell anyone or acknowledge it, thinking it would make me a bad/weak mom…so dumb right? By the time my youngest was 1, I was making an appointment for a temporary ileostomy bag. But my kids only remember the sweet stuff.”
Stephanie: “Simply, it’s possible! It was worried for so long that it wasn’t possible, especially once on a biologic and your Instagram page, Natalie, gave me so much hope! Now, less than 2 weeks from delivering my second baby (but my first pregnancy on a biologic).”
Marnie: “I would tell my kids your disease becomes part of your everyday routine, but it doesn’t define you.”
Crystal: “Make sure your baby learns to take a bottle in case you end up in the hospital with a flare.”
Leslie: “Don’t be scared to be on all the medication you need. You’ll get pregnant one day like you always dreamed.”
Keyla: “This journey will be hard but no matter what your little one becomes stronger through it with you.”
Christine: “Here I am celebrating my 47th birthday with my teenagers! One of the first questions I asked my doctor, according to my mom, was will I be able to have kids? That was when I was 23 years old. Here I am at 47, and they have seen me at my best, and unfortunately, my worst. They are truly the reason why I keep going and want to keep fighting at the worst of times.”
Amy: “Your journey might look different than others, but you can still have a family. Also, accept help when you need it.”
Robin: “My kiddos are 27 and 25 now and I was diagnosed when the 27-year-old was 2.5 and the 25-year-old was a baby. She turned one and took her first steps in the family visiting room at the hospital. So, I have the benefit of living with the fruits of my parenting labor. My IBD has taught me that life is precious. Each moment is precious. Because of this, I really tried to take advantage of life when I was feeling well. AND ALSO, I tended to push through when I wasn’t feeling well if something was important to my family, specifically my children. Your first instinct as a parent will be to protect your children from what you are going through – but it’s ok to be open about what you are experiencing in age-appropriate ways. There is no one perfect way to be a parent, much less be a parent with a chronic illness. Give yourself some GRACE.
If dads, or aunts, or family friends, or grandparents are jumping in to chauffeur your kiddos and/or take them to do fun things that you can’t do – IT STILL COUNTS! Your kids are still getting to do the thing. Your kiddos will benefit from having other adults they know and trust in their lives.
Parenting isn’t for the faint of heart. Connect with people that can share the burden. It’s ok to ask for help. I write this while remembering my mantra was “suck it up and figure it out” when they were little. Granted – I was a single parent for a lot of their young life, and I was fortunate to have a strong support system. Even with the support it was difficult to ask for help. SO, ASK FOR AND ACCEPT HELP.
I don’t know what kind of mom I would have been without IBD, but based on who my girls are now, I’m ok with the mom I was and am with IBD.”
Final Thoughts
Hearing this firsthand perspective from all these incredible IBD moms is so inspiring and comforting. It’s a reminder we are not alone in our struggles or our fears—and let’s face it, motherhood isn’t all sunshine and rainbows. But the beauty motherhood brings to our lives and the unbelievable love you feel for your children is the sunshine and the rainbows that makes it all worth it. When you’re an IBD mom, yes there’s a lot of internalized pain and worry. But there’s also so much motivation and joy found in looking into the eyes of your children and knowing that you are enough and will always be enough for them because you’re you.
There are times when their diapers and bathroom habits may set off alarm signals in your head. Don’t think I haven’t brought one of my kids to the ER because I was fearful, they had IBD…wasn’t that. There have been moments where I’ve been bent over making school lunches. There are times I’m on the couch with a heating pad during bedtime stories or in the bathroom mapping out my game plan of how life will go on if I’m hospitalized, and all the moving places I have to orchestrate if I’m out of commission. But SO much overshadows those moments.
As an IBD mom of three, my kids give me such purpose to celebrate each day and soak in each experience I’m blessed to share with them. They provide me with renewed faith in my body and all that I’m capable of. They remind me to laugh and not take life so seriously. When I’m in pain or going through prep for a scope or an uncomfortable procedure my thoughts float to their sweet faces and the incredible memories we’ve shared and it’s the best reprieve from my painful current reality.
When you’re a mom with chronic illness, sure the days can feel long and the years short…but you have a different level of gratitude for what may seem mundane to others. You will second guess yourself more than your children ever will. They are sponges, watching and soaking up their lived experience with you and without even doing anything you’re raising a children with innate empathy and compassion that you’ll see play out as they grow up—I’ve seen it for YEARS with my kids—and while I wish they weren’t the way they are because of my health, I also wouldn’t have it any other way. IBD is a family disease, it impacts way more than just the patient and know that if you choose to carry children, adopt children, or have babies through surrogacy, you are never a burden to your family. You are enough and always will be to your beautiful babies.
My family planning advice for you
My advice family planning
Have the discussion about your future 3-5 years out (if possible) so you can get a game plan in place. Something as simple as letting your provider know…”someday I hope to be a mom”…is sufficient. This sets the stage for what makes the most sense medication wise, targeting and tracking remission, planning scopes so you can get the ‘green light’ before conception, etc.
Do not try and conceive if you haven’t been in remission for at least 3-6 months. Sure, pregnancies are not always planned and can be a surprise but try not to get pregnant while you’re flaring or have active disease as that increases the likelihood of flaring during pregnancy and after delivery.
Once you find out you’re pregnant, alert your GI the same day as your OBGYN and get the ball rolling on finding a maternal fetal medicine (high risk OB) to be part of your care team.
Do not try and go rogue and go off all medications for pregnancy. Talk with your care team. Do the research so you can see firsthand about the safety and efficacy of most IBD meds in pregnancy and breastfeeding and be confident that by keeping yourself well and your disease controlled in pregnancy, you are helping you and your baby.
Check out the PIANO study and MotherToBaby research opportunities so you can help pave the way for future IBD moms and contribute to research. It’s so rewarding, and your voice and input makes a world of difference. My older two were part of MotherToBaby studies and my youngest is part of PIANO, he’s being “followed” until age 18!
Never hesitate to reach out to fellow women with IBD on social media who are moms and receive firsthand advice about their journey so you can feel a bit more at ease about yours.
If it’s happened to you, you know the feeling all too well. When I received a letter in the mail informing me that the biologic injection, I had been on for 16 years was no longer going to be covered, my stomach flipped, and my heart sank. When you live with a complicated disease like Crohn’s or ulcerative colitis and find a therapy that keeps your health in check and your IBD well-controlled, it’s extremely stressful and daunting to face the worry of being forced to switch your medication to a biosimilar or a different biologic all together.
Like many patients, I asked my gastroenterologist to appeal the forced medication switch. Even though I was almost positive we would be denied, I did not want to go down without a fight. As expected, within days of my GI’s appeal, we were told by insurance that Humira would no longer be covered and that I would need to choose a biosimilar or a different drug class all together moving forward.
I chose to go on the biosimilar Hyrimoz for many reasons—the first being that anti-TNF drugs have worked well for me for YEARS, by choosing to go off it and switch to a different drug class, I ran the risk of building up antibodies and possibly not responding as well to treatment. I also have a comfort level with self-injections and know how I have typically responded to anti-TNF medication in the past.
The emotions and heartache of having to say goodbye to a medication that carried me through for 16 years, allowed me to bring three healthy babies into this world, and stay out of the emergency room and hospital since becoming a mom 7.5 years ago tore me apart. I sobbed. I stressed. I was anxious.
Switching to a biosimilar—the emotional and physical toll
Much to my dismay, I started Hyrimoz in July 2024. The first eight days I felt the same and then my health began to crumble. I lasted four injections—and during that time I went from being in deep remission for years to needing pain medication to make it through elementary school PTO meetings and while coaching my kindergarten soccer team. I went from feeling well most of the time to running to the bathroom 15+ times a day and almost having accidents in public. I went from being able to eat whatever I wanted to worrying about how consuming anything was going to make me feel. I spent nights curled up in pain and days feeling bloated and on edge about whether every decision I made was going to make me unwell.
I knew something had to change. I refused to have my quality of life ripped from me without speaking up. I kept a detailed journal every single day since I started the biosimilar. I articulated my concerns to my care team repeatedly over the Patient Portal. We ran extra labs, I did a telehealth appointment, I spoke with GIs around the United States I have come to know and trust through my patient advocacy work. My care team told me that meeting in person for a clinic appointment or over telehealth would help build our case, as that carries more weight than just communicating over the Portal. Keep that in mind.
This week on Lights, Camera, Crohn’s I offer tips for building your case, writing your appeal letter, and making sure your voice is heard. Patients are constantly made to feel less than. It’s all about the profits and not about the patients. This needs to stop. Insurance companies and specialty pharmacies need to stop making our lives so damn difficult and start to recognize the havoc they cause by delaying treatment, blocking treatment options, and forcing us to change a medication that finally controls our disease. Living and managing chronic illness is a full-time job in this country. The hours and days wasted and spent on the phone dealing with all the red tape is an absolute nightmare, and unless you’ve experienced it, you have no clue the headaches it causes, the time suck it is, and how it puts the quality of our lives in jeopardy.
Keeping track of it all
When living with IBD, the bad days come and go and oftentimes we forget just how often or how horribly we feel because our “normal” is not normal. By journaling or writing in the Notes app on your phone anytime anything with your health is awry, this helps paint a clear picture for not only you, but your providers. If you can say, “On Tuesday, September 24th I went to the bathroom 10 times, I couldn’t eat, I had joint pain in my hands, and abdominal pain that required a heating pad”—this illustrates the complexity of your symptoms. Imagine having that type of intel for two months. These details help your appeal in a big way. My IBD Nurse told me that she believes my typed-out symptom journal made all the difference in winning our second appeal.
So, take notes and be as descriptive as possible. If you have a random headache and you’re not sure why, write it down. If you get new pain, you haven’t experienced before keep track of it. If you eat and must run right to the bathroom or start feeling pain jot it down.
Many of my symptoms I’ve dealt with since switching to the biosimilar feel exactly like a Crohn’s flare. After weeks of this, I started to freak out that I was losing my remission all because of a forced medication switch. A world-renowned GI took the time to call me as I was making dinner for my family one night to hear more about my situation. He did this out of the goodness of his heart to provide additional guidance and support. After hearing more about my situation, he believed it was my body having adverse side effects to the biosimilar rather than a Crohn’s flare, since my labs were checking out fine. Everything started to make sense. While he wasn’t sure our appeal would be granted, he listened and empathized with what I was going through.
Writing your own appeal letter
My IBD team recommended I also write a patient letter that they would include with their second appeal. I was happy to take the time to offer my voice and share what the experience of being on a biosimilar was like for me. At the same time, I had never written an appeal letter. Before I started I did my research on how to approach and craft the wording.
I made sure not to come off angry or accusatory. I kept the letter as professional as possible, while also explaining very clearly how horribly I was responding to the medication. I backed up my letter with science and attributed research that’s been done regarding biosimilars. I learned from research published in the Journal of Crohn’s and Colitis (2020) that while around 80% of patients have a seamless transition, 10-20% have a negative response. It’s important to note that just because you are switched to a biosimilar, does not mean your health will deteriorate. Many people thrive and don’t notice a difference, but the issue is—you don’t know how you are going to respond. I went into the transition with an open mind and as positive as possible, but the unknown looms over and it’s emotionally draining to constantly wonder if you are going to feel unwell because of the forced switch.
Tips for expressing yourself in the appeal letter
I will use Humira as an example since that was my experience, but this goes for any biologic/medication.
Start with basic information—your name, date of birth, insurance ID number, and the policy number.
Provide the name of the medication you’ve been switched from (in my case Humira) and the one you’ve been switched to (Hyrimoz).
Mention the date when the change was made.
Clearly state the purpose of the letter. For example, “”I am writing to formally appeal the decision to switch my Crohn’s treatment from Humira to Hyrimoz.”
Briefly provide an overview of your health history with IBD, diagnosis date, and the treatments you’ve tried, hospitalizations/surgeries. If you’ve been on the same treatment for years and it’s helped you, highlight how effective the therapy has been. Mention the stability you’ve achieved with Humira—humanize your story. For instance, “While on Humira I was able to work full-time, have three healthy pregnancies and babies, and be a mom without my health holding me back.”
Reference any previous experiences with other medications that may have failed you or caused side effects.
Emphasize the risk of switching medications after long-term success. For IBD patients, changing medications can result in loss of response, worsening of symptoms or disease progression, potential adverse reactions.
Have your gastroenterologist provide their own letter that emphasizes the risks of switching, the stability you’ve achieved, and their professional recommendation. They will reference any studies that are available and be able to provide medical records showing your history on the medication.
If applicable, reference and cite insurance company policies that include provisions for medical necessity, or any pre-authorization that was previously approved.
Emphasize the impact on your health and finances and highlight the potential cost to both your health and your insurance provider if switching leads to disease flare ups, complications, hospitalizations, or the need for additional screenings, scopes, or treatments.
Close with a strong, respectful request. End the letter with a clear statement, such as:
“For the reasons stated above, I respectfully request that you reconsider your decision and allow me to remain on Humira as prescribed by my doctor.”
I signed my letter:
My family deserves more and so do I.
Sincerely,
Natalie Hayden
Ironically, when I wrote my appeal letter I was dealing with horrible abdominal pain, lying in bed with a heating pad.
Finding out we won the appeal
Once my appeal letter and journal of symptoms were finalized, I sent them to my GI and IBD nurse over the Patient Portal. I was on pins and needles wondering what was going to come next. I sent over the materials on a Friday morning and the following Monday, I received word from my nurse over the Portal that the insurance denied the 2nd appeal because back in June when my GI submitted the first appeal, he deemed it “urgent”—in doing so, the insurance company considers those appeals “2nd level appeals”—if those are denied, they consider the case closed. Imagine that— “closing a case” before a patient has even started a different medication. Makes sense…right?! Can’t make this stuff up. When I heard this, I felt incredibly defeated.
My care team was unaware of that and asked for a clinician to review our materials—the insurance company agreed and said there would be a decision in 72 hours. That same night, while I was making dinner for my family, I received an email from CVS Specialty pharmacy saying my prior authorization for Humira had been approved. I couldn’t believe my eyes. I’ll never forget how it felt to see those words and read that email.
My kids all smiled and laughed and danced with me, no idea what was really going on. But the celebratory moment was so incredibly jubilant they were smiling ear to ear. These last two months they’ve witnessed me unwell way too many times. It’s a side of my Crohn’s I’m not sure they even knew existed prior to now.
This past Friday night the same abdominal pain I’ve been dealing with began as the kids got off the bus. I had to take a pain pill before an advocacy call that was ironically about How to Deal with Insurance—for an upcoming panel discussion at a medical conference I’m speaking at in December. After my call and rushing through a makeshift meal, I took all three of my kids to my son’s soccer practice and told my friends on the sidelines how sick I felt. I came home and had to take another pain pill, had difficulty with the bedtime routine, and laid on the couch with a heating pad. But it helped to know these shitty days will hopefully be ending.
Looking to the future
This blog article is coming out the same day as I go back on Humira after winning my insurance appeal. While it’s a big win for me, it’s a small win for our community because at the end of the day an incomprehensible number of people are forced off their medications or denied off-label dosing, all so insurance companies see a better bottom line. As patients we can’t stand for this. Medical providers should and need to have the FINAL say in what medications their patients are on and they should always be willing to go to bat for their patients and appeal even if they “know they’ll get denied.” I hear all too often from fellow patients that their GI won’t even appeal in the first place and does not empathize with the fear of being forced on a biosimilar.
For those providers, I ask…can you guarantee, 100%, no doubts whatsoever that your patient will thrive and do just as well on a biosimilar as they did their originator biologic? Does the benefit really outweigh the risk? Should IBD patients who already live with an unpredictable and complicated chronic illness have to endure the stress, medical trauma, and anxiety that result from forced medication switches or denials related to off-label dosing?
As patients, caregivers, and medical providers we are a team. We know what’s right. Doctors and nurses should not have to waste so much energy on fighting for off-label dosing, necessary treatments, and keeping their patients on medications that are working. A HUGE thank you to all the providers and nurses who go above and beyond and out of their way to fight for us and do everything in their power to make sure we receive the medical treatments we need to keep our IBD in check. Your efforts, whether successful or not, are not going unnoticed.
At the end of the day, the big argument is all about “accessibility” and “cost savings” in the United States, but are patients really reaping this benefit here? I paid at most 0-$5 for Humira injections, I paid $0 for Hyrimoz. Do you know how I paid? I paid with living more than two months with health issues that would bring the average person to their knees. I went from being in deep remission to re-living the trauma of how unpredictable life with IBD can be. I paid by being on a biosimilar for 71 days and spending more than half of them with debilitating pain and symptoms.
Big pharma can step up to the plate and lower their absurd pricing on biologics (originator drugs) so that biosimilars are of no monetary benefit to pharmacy benefit managers. Let’s make it an equal playing field and see what happens. Would Big Pharma rather lose all their patients because their biologic is being removed from the insurance formulary or keep patients, lower their costs of the drugs, and keep insurance companies from choosing biosimilars because it saves them money?
As a vocal IBD patient advocate and leader, I understand and feel for those who haven’t been able to go back on therapies or receive different dosage recommendations they depend on for their well-being. While I’m thrilled to be back on my biologic, now I have the worry about whether my body will respond the same as it did previously.
The medication I’ve depended on for 16 years to bring me comfort is finally back in my fridge and going to be back in my body today. The prior authorization lasts one year, so I’m not sure what the future will bring, but I’m focused on getting my health back on track right now and worrying about that later. I’m grateful my energy in dealing with my own appeal is over and now I can pour my efforts into trying to drive change for our community. We all deserve so much more. Let’s go after what is right and make forced medication switching and off-label dosing delays and denials by insurance companies illegal in the United States.
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