When House Bill 544 passed the Montana Legislature and was signed into law May 1, 2025, it marked more than just a policy victory—it became a symbol of hope and action for families affected by Inflammatory Bowel Disease (IBD), especially those navigating the challenges of very early onset (VEO) IBD.
In the latest article on Lights, Camera, Crohn’s, we hear from the Founder and Executive Director of VEO Guardians, Rachel Markovich. She is not only a caregiver, but a passionate advocate behind the bill. Rachel shares the impact this is expected to have on families, the journey to getting the bill passed, and her hopes for this to set a precedent for the rest of the country.
What is House Bill 544, and why does it matter?
HB 544 is a transformative piece of legislation designed to eliminate two of the biggest hurdles families face when managing IBD: access to timely treatment and the threat of retroactive insurance denials.
The bill ensures that when a medical provider can present two efficacy studies showing a biologic treatment works in children of a comparable age, insurance companies must approve the request. This provision reduces dangerous delays in treatment— a common and deeply frustrating barrier for caregivers and physicians alike. Click here to see the news coverage.
The second part of the bill protects all Montanans by prohibiting insurers from denying coverage retroactively after a medication has already been approved. In the unpredictable world of chronic illness, this gives families something they often lack: peace of mind.
How did this caregiver become involved?
For Rachel as a mom of a son with VEO-IBD, this fight is personal.
“My son was diagnosed with VEO IBD at just 22 months old,” she shared. “Thankfully, his health has stabilized, and that gift gave me the time and perspective to help others.”
What began as outreach soon turned into a movement. With the support of VEO Guardians and a network of dedicated advocates, she testified in Helena and worked tirelessly to humanize the legislation. “It was an emotional and transformative journey—one built on compassion and resolve. It’s not just about celebrating a win—it’s about raising awareness for what this means for families across the state.”
The mission of VEO-Guardians was previously featured on Lights, Camera, Crohn’s, you can check out that article here.
Kim Longcake is an Advanced Nurse Practitioner in Montana. She says, “It is such an honor to be a part of this amazing organization. I am proud of the work we have done to protect access to care for Montana children and grateful to have a resource for families in their greatest time of need.”
Will this bill inspire similar legislation across the country?
Yes—and momentum is building.
“We’ve been in touch with national organizations like the EveryLife Foundation and the Crohn’s & Colitis Foundation. They’re excited about what we’ve accomplished here in Montana, and we’re developing a strategy to help other states follow suit.”
For those interested in bringing similar legislation to their own communities, the message from Rachel is clear: “We’re here, and we’re ready to help.”
How can people get involved, especially if they don’t live in Montana?
“Stay connected with us,” she urged. VEO Guardians regularly shares updates, advocacy tools, and family stories through their social media channels and newsletter.
Anyone can reach out directly for guidance, support, or to get involved in expanding the model elsewhere. “We want to help others navigate this path.”
What has VEO Guardians accomplished so far?
The organization recently helped a family avoid a $6,200 charge when a job loss disrupted their child’s insurance—ensuring timely infusion treatment. They’ve signed a reimbursement agreement with Community Medical and are working to secure similar partnerships with Montana’s two other major hospitals.
They’ve also welcomed a new board member with expertise in family counseling and plan to launch free counseling services and 504 plan support on their website soon. And for children newly diagnosed with IBD, a teddy bear delivery program is already in motion.
“Every step we take is rooted in our mission to support, uplift, and empower the IBD community.”
Final Thoughts
“In the darkest moments, we often find the strength to shine the brightest,” she said. “This bill is proof of what compassion and community can accomplish. To anyone facing this diagnosis—you’re not alone. There is a path forward, and we’re walking it together.”
Rachel tells me local gastroenterologists in Montana whom she’s spoken with are thrilled the bill has been signed because it removes the red tape and allows doctors to do what they do best—treat their patients. It’s a win for everyone.
“It fills me with pride, gratitude, and hope,” Rachel said. “What once felt like a long shot is now a new reality for countless families. I know it will ease the road for many who follow.”
To stay up to date or get involved, follow VEO Guardians on Facebook and Instagram, or visit their website to sign up for their newsletter.
When most kids were running around their middle schools full of energy and excitement, Taylor Gautney was quietly fighting an invisible battle. In sixth grade, while his classmates joined extracurriculars and laughed through lunch breaks, Taylor was barely making it through the day. Many afternoons were spent passed out on the couch after going the entire day without eating. One day, after skipping lunch again, he collapsed on his way back to class. That moment changed everything.
At first, doctors suspected celiac disease. He was placed on a gluten-free diet after an initial endoscopy, but nothing improved. For years, the mystery lingered—until a more thorough examination revealed the real culprit: Crohn’s disease. A new diagnosis, a new treatment—Humira—and a new outlook on life began to take shape.
Now in remission and attending Arizona State University (ASU), Taylor has transformed his story from one of struggles to one of strength. But it wasn’t always easy. This week on Lights, Camera, Crohn’s a firsthand look at what it was like to be diagnosed with IBD at such a young age and how his first year of college went living across the country from his family.
“Just Keep Fighting”
Looking back, Taylor wishes he could tell his younger self one thing: “Just keep fighting and enjoying the positives in life.” Being diagnosed with a chronic illness at age 11 felt like a devastating detour. He admits that it changed the way he viewed the world and himself. “I started to think of every aspect of life as negative,” he recalls. But over time, Taylor learned to embrace small joys, and most importantly, to appreciate the unwavering support of his family.
Taylor’s mom, Anna, says, “It’s crucial to advocate for your child and speak up for them if medications are not working. It is also important to showcase to your child that you are in this with them, help them find a community, such as the Crohn’s and Colitis Foundation. This way, they can meet people who have what they have and formulate a sense of belonging.”
Holding On Through the Hard Days
Taylor wants young people diagnosed with IBD to know that while the patient experience is incredibly challenging—often filled with procedures and surgery, flare days, and quiet battles with your own body, it doesn’t define who you are. “People can’t see the diagnosis from the outside, they see your personality and exterior self,” he says. “Just be yourself, let people come to you and support you, especially during a rough time like an IBD diagnosis.”
The Power of Family
Taylor credits his parents for being the steady foundation beneath his feet throughout the rollercoaster of diagnoses and treatments. “My mom has been my rock,” he says. She’s been by his side at almost every appointment and has researched tirelessly to understand Crohn’s. Taylor’s dad always makes time to show Taylor the world with family trips and unshakable support. “They have given everything to me and made my life so much easier after the diagnosis.”
Life at ASU with IBD
Taylor’s transition to college life came with its own set of hurdles, including logistical nightmares like getting his medication delivered to campus. But he’s found his rhythm. “It’s definitely not as hard as I thought it would be,” he says. One surprising blessing? His roommate. “He also had a medical condition that required shots, pills, and daily maintenance,” Taylor says. Their shared experiences helped them form an instant bond, even leading to grocery trips for IBD-friendly dorm snacks.
Taylor’s professors and friends have also shown deep compassion. He remembers an English professor who read about his condition in a personal essay and went out of her way to learn more about Crohn’s. “She made me feel really special and seen,” he says. His friends check in on him, make sure he’s got his injections, and understand when he needs to sit out from social events. “I thank my friends at ASU for their understanding and empathy.”
A Voice for the Voiceless
Studying sports journalism, Taylor dreams of becoming a play-by-play broadcaster for Major League Baseball—ideally for the Atlanta Braves. But his passion extends beyond sports. He wants to use his voice to make an impact and tell meaningful stories. One of the most pivotal moments in his life came when he was asked to be the Pediatric Honored Hero for the Crohn’s & Colitis Foundation’s Birmingham walk. “That one event gave me confidence to speak in public and really sparked my love for communication,” he says.
Now connected with the Arizona-New Mexico chapter of the Foundation, Taylor is committed to giving back. His mission? To reach kids and teens who are newly diagnosed and remind them they are not alone.
Final thoughts
Taylor and I connected after he was doing research for a college project and reached out to interview me about my patient experience and advocacy work. During our initial Zoom interview, I was so blown away by his positive attitude and how he takes on life with IBD. I asked him during the call if I could have the honor of sharing his story. While there are male patient advocates—we need more who are willing to share their story.
Taylor is wise beyond his years, so articulate, genuine, and kind. The sky is truly the limit when it comes to his future. If anything, living with Crohn’s disease since age 11 has helped show him all he’s capable of despite his disease.
You can connect with Taylor by following him on Instagram: @t.gautney or by emailing him: tgautney@asu.edu.
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.
An Inflammatory Bowel Disease (IBD) diagnosis often comes with a heavy toll, not only on the body but also on the mind and spirit. For patient leader and three-time author Stephanie A. Wynn, her journey through IBD (like many of us) has been one of pain, perseverance, and advocacy.
This week on Lights, Camera, Crohn’s a look at what inspired Stephanie to write, “Navigating Inflammatory Bowel Disease – A Six-Week Blueprint for Better Gut Health” and what she hopes our community takes away from her latest book.
The Inspiration Behind the Book
Reflecting on her personal story, Stephanie recalls a heartbreaking experience that would unknowingly be tied to her IBD diagnosis years later. “Fifteen years ago, I lost my daughter, Jameson. At the time, I had no idea that Crohn’s Disease had anything to do with it. I wasn’t even diagnosed yet,” she shares. For years, her symptoms were not properly understood by doctors, which only added to the emotional and physical turmoil. It wasn’t until her sixth diagnosis that medical professionals finally connected the dots.
Through this painful experience, Stephanie realized the vital need for advocacy and support for those suffering in silence. This realization sparked her passion for helping others who may be overlooked or misdiagnosed. “I advocate for the women who are told their pain is normal. I advocate for the patients dismissed by doctors because their symptoms don’t fit the textbook definition,” Stephanie explains.
This journey led to the creation of Navigating Inflammatory Bowel Disease (IBD): A Six-Week Blueprint for Better Gut Health. This book is more than just a personal account; it’s a powerful resource for those living with IBD and their caregivers. Stephanie wrote the book she wished she had when she was first diagnosed — a roadmap that offers not only practical advice but also emotional support.
A Glimpse Inside the Writing Process
As a three-time author, Stephanie approaches writing as a deeply empathetic process. She listens carefully to the stories and concerns of the IBD community. “Before I write, I ask: What are people struggling with the most? What’s missing from the resources currently available? How can I make complex medical and lifestyle topics easier to digest?” she says.
Each chapter of Navigating Inflammatory Bowel Disease (IBD) is designed to address the real-life struggles of patients and caregivers. The book offers practical advice on managing symptoms, self-advocating in medical spaces, and embracing resilience, making it a comprehensive guide to living well with IBD.
What Stephanie Hopes Readers Take Away
The central focus of this book is to give patients confidence. Confidence in managing their health, advocating for themselves in medical spaces, and maintaining hope for a fulfilling life despite the challenges of IBD. The six-week blueprint includes:
Actionable steps to manage life with Crohn’s Disease or Ulcerative Colitis
Reflection prompts to help patients process their journey
Guidance on managing symptoms, diet, and mental health
Tools for improving communication with doctors and loved ones
Stephanie emphasizes that no one should have to face IBD alone. “This book is about helping people find their voice, take control of their health, and live their lives with confidence.”
Amplifying Underrepresented Voices
Another key aspect of Stephanie’s work is ensuring that underrepresented communities are included in the conversation about IBD. She is especially passionate about advocating for Black, Brown, and marginalized patients who often face additional barriers to diagnosis, treatment, and support.
“Minorities and underrepresented communities have been overlooked in conversations about IBD,” she says. “The lack of awareness, delayed diagnoses, and disparities in treatment access are real barriers. Through my work as an IBD Patient Navigator® and Certified Patient Leader, I ensure that these communities feel seen, heard, and supported.” Stephanie is determined to elevate voices that are often ignored and make sure that health equity becomes a priority for all.
Why This Book Means So Much
For Stephanie, Navigating Inflammatory Bowel Disease is not just a book — it’s a mission. It is the culmination of her own struggles, triumphs, and desire to make a difference. “This book isn’t just a project, it’s my story, my advocacy, my purpose,” she shares. It’s the blueprint she desperately needed when she first began her journey with IBD, and now it’s available for others to guide them through the maze of treatments, lifestyle adjustments, and emotional challenges that come with this chronic illness.
She hopes her story serves as a beacon of hope for anyone who feels lost or overwhelmed by their diagnosis. “No one should have to figure out Crohn’s Disease or Ulcerative Colitis alone,” Stephanie says.
Final Thoughts
Stephanie’s message is clear: IBD may shape our lives, but it doesn’t have to define us—which I love! Navigating Inflammatory Bowel Disease (IBD): A Six-Week Blueprint for Better Gut Health is not just a guide for managing symptoms, it’s a testament to the power of resilience, hope, and community. With this book, Stephanie aims to spark a movement towards better gut health, stronger patient advocacy, and a future where no one navigates IBD alone.
Whether you are newly diagnosed, a caregiver, or someone who has lived with IBD for years, this book is for you. As a fellow patient advocate and leader, I’m so proud of Stephanie for going after her dreams and making this latest resource a reality for our community. Together, we can turn pain into purpose and ensure that no one fights this battle in silence.
Click here to order your copy of Navigating Inflammatory Bowel Disease.
Let’s keep the conversation going.
Connect with Stephanie on Instagram and LinkedIn and share your IBD story.
Learn more about the Stephanie A. Wynn Foundation, Inc., which is dedicated to eliminating healthcare and financial disparities in underserved African American and marginalized communities.
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.
Millions of people worldwide live with IBD. For teenagers with Crohn’s disease or ulcerative colitis, the challenges are multi-faceted—not only must they manage their health, but they also face the pressures of academic life, dealing with physical and emotional challenges their peers can’t relate to, and the daunting costs of higher education. Thankfully, several scholarship programs exist to support students dealing with IBD, offering financial assistance, and fostering a sense of community and empowerment.
This week on Lights, Camera, Crohn’s a look at what scholarships are available and tips for applying. This story idea was inspired by a caregiver who sent me a direct message on Instagram asking if her teenage daughter could be awarded a scholarship for going above and beyond scholastically despite having IBD. I wasn’t aware of what is available—and in working on this article I did my research as though I was a teen/caregiver looking up scholarships geared towards those with IBD.
Why IBD Scholarships Matter
Teens with IBD often navigate difficult symptoms, frequent medical appointments, and hospitalizations. Despite these challenges, many young people with IBD excel academically, participate in extracurricular activities, and remain determined to pursue higher education. Scholarships tailored to their needs can ease the financial burden of college tuition and provide a sense of validation for their hard work and resilience.
In addition to financial relief, these scholarships can help build a sense of camaraderie among students with similar experiences. IBD scholarships are a powerful way for these teens to connect, share their stories, and feel supported and empowered in their journey toward college and beyond.
Notable Scholarships for Teens with IBD
Abbvie Immunology Scholarship: The AbbVie Immunology Scholarship aims to reduce the financial burden for students impacted by inflammatory diseases. It is awarded to 45 students. Recipients pursuing an associate degree will receive a $5,000 scholarship. Those pursuing a bachelor’s or master’s degree/PhD will receive a $15,000 scholarship.
The Salix Gastrointestinal Health Scholarship Award: Ten scholarships to 10 outstanding students living with gastrointestinal (GI) diseases and disorders who are pursuing their higher education goals. The 2025-2026 application period opened February 10, 2025, and the end date to apply is May 5, 2025.
Patient Advocate Foundation – Scholarship” In 2000, PAF established the Scholarship for Survivors program to honor these individuals by offering educational scholarships to students who have suffered (or are suffering) from cancer or a chronic illness. The deadline for submissions is March 7, 2025.
180 Medical Scholarship Program: The 180 Medical Scholarship Program is open to full-time college students living with specific medical conditions, including spinal cord injuries, spina bifida, transverse myelitis, neurogenic bladder, or an ostomy (ileostomy, colostomy, and/or urostomy). They offer seven $1,000 college scholarships annually to seven recipients. Accepting applications through June 1, 2025. Recipients are announced in August.
AAHD Frederick J. Krause Scholarship on Health and Disability: Awarded annually to deserving students with a disability who are pursuing undergraduate/graduate studies in an accredited university and who are pursuing studies related to health and disability. Scholarships are generally $1,000.
Buckfire & Buckfire, P.C. Disability Scholarship Program: The Disability Scholarship was established in 2014 as part of the law firm’s commitment to helping students with disabilities or injuries who need financial assistance for educational purposes. The scholarship awards $1,000 to one student. The deadline to apply is October 1, 2025.
Defining the Disability Scholarship: The attorneys at the Berkowitz Hanna Malpractice and Injury Lawyers offer a $1,000 scholarship to help a student overcome a disability. Students define what disability means to them and explain how disability has been part of their life. Applications are not being accepted right now but stay tuned for 2025.
Lawrence Madeiros Scholarship: The Larence Madeiros Scholarship Fund was formed to provide awareness of chronic disorders to the public and to stimulate, foster, and encourage interest, awareness, and activism at the state and national level with reference to the fight against chronic disorders. The scholarship is awarded to high school seniors living with a chronic disorder and continuing their education at a college or university. The deadline for applying is May 1, 2025.
Overcoming Disability Scholarship: The Law Offices of Coats & Todd Overcoming Disability Scholarship awards $2,500 scholarships twice a year to college students who are managing a disability while attending school. To qualify, students must have a physical or psychological disability that affects their ability to work. The deadline for applying is March 26, 2025. Their team can be reached at: scholarships@coatsandtoddlaw.com
IBD Connects Scholarship Program: To support the educational aspirations of students impacted by IBD, IBD Connect awards two annual scholarships, each valued at $1,000, to eligible applicants enrolled in a U.S. college, university, or trade/vocational school for the upcoming academic year. The application program opens March 1, 2025, and ends May 31, 2025. For any questions regarding the Scholarship Program, email Lisa Fournier: lisafournier@ibdconnectinc.org.
It’s important to note there may be other IBD-related scholarships available, this list reflects what I discovered upon researching this article.
Additional Scholarship Resources
Beyond disease-specific scholarships, many general scholarships and grants are available to students with disabilities or health conditions. Websites like Scholarships.com, Niche, and Unigo allow users to search for scholarships based on specific needs, including chronic illness or disabilities.
Additionally, some universities even offer their own scholarships for students with disabilities, including those affected by IBD. It’s always a good idea to contact the admissions or financial aid office of the school you’re interested in to inquire about any opportunities.
Tips for Applying for IBD Scholarships
Start Early: Many scholarships have early deadlines, so it’s important to start the application process well in advance of the due dates.
Tell Your Story: Your personal experience with IBD is what sets you apart. Be honest and heartfelt in your essays, sharing how IBD has shaped you as a person and student.
Gather Documents: Be prepared to provide documentation of your diagnosis, along with transcripts and letters of recommendation.
Stay Organized: Keep track of all deadlines, required documents, and any special instructions for each scholarship.
Final thoughts
For teens living with IBD, pursuing a college education can be a difficult but achievable goal. Scholarships specifically designed for students with IBD can alleviate financial stress, validate personal resilience, and provide a network of support. I was “lucky” in the respect that I was not diagnosed with Crohn’s disease until two months after college graduation, so I did not have to navigate these challenges while furthering my education and moving away from home. Along with scholarships, it’s important for caregivers and students with IBD to communicate the need for accommodations on the college campus—this can range from having a bathroom in or near your dorm room to having extra time to complete assignments. Click here to read another Lights, Camera, Crohn’s article that digs deeper into this topic.
As more awareness is raised about the challenges of IBD, opportunities for scholarships and grants continue to grow, ensuring that students with IBD can thrive academically without being held back by their condition.
Living with Inflammatory Bowel Disease is a daily challenge. The unpredictable flare-ups, the emotional toll, and the constant management of symptoms can often leave us feeling isolated, fatigued, and overwhelmed. While traditional treatments such as medications and therapy are essential, an often-overlooked but highly effective form of support comes in the form of our furry friends: dogs.
Today marks five years without my Hamilton. Not a day goes by that I don’t miss his gentle presence and the way he always comforted me through my toughest days. He was more than just a dog—he was my rock, my support, my constant companion through the ups and downs of living with a chronic illness and the most regal and well-behaved pup you’ve ever met. Never barked. Never jumped on counters or ate food off the table. Never woke me up once in the middle of the night. He spoiled me and was an absolute angel on all fours.
For those with IBD, the companionship of a dog can offer profound emotional and physical benefits. This week on Lights, Camera, Crohn’s let’s explore some of the key ways in which a dog can positively impact the life of someone living with IBD.
Emotional Support and Stress Reduction
Living with IBD often means dealing with chronic pain, fatigue, and anxiety about when the next flare-up might occur. These stressors can take a significant toll on mental health. One of the most important ways a dog can help is by providing emotional support.
Studies have shown that interacting with dogs can lower levels of cortisol, the stress hormone, while increasing the production of oxytocin, the “feel-good” hormone. The unconditional love and companionship that a dog offers can help reduce feelings of loneliness, anxiety, and depression. A wagging tail or a warm cuddle from a dog can be incredibly therapeutic when dealing with the emotional rollercoaster of a chronic illness like IBD.
Encouraging Physical Activity
Managing IBD requires a careful balance of exercise and rest, as too much physical activity can trigger symptoms, but staying sedentary isn’t ideal for overall health either. Fortunately, dogs provide a perfect solution.
Owning a dog encourages physical activity through regular walks, playtime, and outdoor activities. Research shows that dog owners are more likely to meet the recommended physical activity levels, which can be crucial for maintaining a healthy weight, improving cardiovascular health, and promoting overall well-being. For someone with IBD, staying active helps support digestive health and can even alleviate some of the symptoms of the disease.
Building Routine and Structure
IBD often requires careful planning around diet, rest, and self-care. One of the less-discussed benefits of dog ownership is how it helps create a daily routine. Dogs need consistent feeding times, regular walks, and playtime, which naturally brings structure and discipline to a person’s day. This structure can be particularly valuable for those with chronic illnesses, as it helps maintain a sense of normalcy, even when everything else feels unpredictable.
Additionally, having a dog can act as a gentle reminder to take breaks, step outside, and tend to your own self-care, whether that’s taking a walk or simply sitting with your pet and enjoying a calm moment.
Providing Comfort and Reducing Isolation
IBD can sometimes lead to feelings of isolation, as it’s not always easy to explain to others what you’re going through. Having a dog can significantly reduce these feelings. Dogs are intuitive creatures who can often sense when their owners are feeling unwell or stressed, and they instinctively offer comfort, whether it’s by cuddling up with you on the couch or simply lying by your side.
The companionship a dog provides is unconditional, and they never judge. This can be incredibly comforting when you’re managing the unpredictable nature of IBD. A dog’s presence offers emotional stability and the feeling that you are never truly alone in your journey.
Potential Health Benefits for Gut Health
Emerging research suggests that pets, particularly dogs, may even have a positive impact on gut health. While this connection is still being studied, early findings suggest that exposure to dogs, especially in childhood, might help foster a healthy gut microbiome, which could be beneficial for preventing or managing diseases like Crohn’s.
Having a dog might not directly cure IBD, but their presence may contribute to a healthier environment for overall well-being. Additionally, the companionship of a dog can help reduce stress levels, which, in turn, can have a positive impact on gastrointestinal health since stress is a known trigger for IBD flare-ups.
Offering Purpose and a Sense of Responsibility
One of the often-overlooked benefits of having a dog when living with IBD is the sense of purpose they bring. Chronic illness can make it hard to feel motivated or engaged, especially during flare-ups when fatigue and pain dominate. Caring for a dog, however, gives you a reason to get out of bed in the morning and take care of another living being.
Whether it’s feeding them, taking them for a walk, or simply providing them with love, dogs offer a sense of responsibility that can help boost mood and self-worth. This added sense of purpose can be a powerful antidote to the emotional fatigue that often accompanies chronic illness.
Social Interaction and Connection
Having a dog also creates opportunities for social interactions. Whether it’s chatting with a neighbor while walking your dog or participating in pet-related activities, dogs naturally encourage connection. This can be especially important for those with IBD, who might avoid social situations out of fear of experiencing a flare-up in public.
Dogs can help ease the tension of these social situations by acting as an icebreaker and fostering a sense of community. Socializing with other dog owners can also reduce feelings of isolation and create a network of support.
Final Thoughts
While dogs may not be a cure for Inflammatory Bowel Disease, they certainly offer a range of emotional, physical, and social benefits that can make living with the condition a little easier. From reducing stress and anxiety to promoting physical activity and fostering emotional connection, the positive impact of having a dog cannot be overstated. For many people with IBD, their dog is more than just a pet—they’re a faithful companion, a source of comfort, a reminder that even on the toughest days, there’s always someone there to offer unconditional love, and they are truly a member of the family.
Even though it’s been five years since my sweet boy crossed the rainbow bridge, my kids still talk about him almost daily. My 7-year-old prays for him every night (“Hamilton is in heaven and he’s in our hearts”) and we often talk about the possibility of getting a dog in the not so far future. Up until this point I couldn’t even imagine loving or having a new dog, as Hami set the bar SO high and I can’t fathom ever having a more perfect sidekick. I also can’t imagine enduring the horrible heartbreak that comes along with losing an animal, it’s one of the hardest experiences I’ve ever gone through and has stuck with him to this day. But how luckily are we to share such a special bond and love with an animal. I’m hopeful to adopt another dog again someday so my kids can experience the magic of it all.
If you’re living with IBD and considering adopting a dog, it may be one of the best decisions you make for your mental and physical health. After all, sometimes the most powerful healing comes in the form of a wagging tail and a warm, furry hug.
Crohn’s disease and ulcerative colitis often require medication to keep inflammation under control, but in some rare circumstances, just one medication isn’t enough. Research shows only 40 percent of people with IBD achieve remission within one year of taking a single drug. Dual Targeted Therapy (DTT) involves using two different types of treatments at the same time to achieve better disease control. This disease management plan comes to play when single-drug therapy does not adequately control symptoms or when a more aggressive treatment is needed.
This week on Lights, Camera, Crohn’s we hear from esteemed gastroenterologist Dr. Laura Targownik along with several IBD warriors who have utilized DTT to help manage their IBD.
IBD Dual-Targeted Therapy Options
There are several ways healthcare professionals can help manage IBD with dual therapy.
Biologics and Immunomodulators
More commonly, combining a biologic therapy such as infliximab (Remicade), adalimumab (Humira), or vedolizumab (Entyvio) along with an immunomodulator like azathioprine, 6-mercaptopurine, methotrexate. The purpose of this is to enhance the effectiveness and potentially lower the risk of developing antibodies against biologic drugs.
Biologics and Small Molecule Inhibitors
A newer approach involves combining a biologic with a small molecule inhibitor like tofacitinib (Xeljanz) or upadacitinib (Rinvoq). This can target different pathways of the immune response, potentially offering a more comprehensive approach to suppressing inflammation. This can be used in refractory cases and should only be prescribed by an expert IBD physician.
In patients who do not respond to single biologic therapy, there is growing interest in using two biologic agents targeting different inflammatory pathways. However, this approach is not yet widely supported as healthcare providers weigh side effects risks and this is considered experimental.
Dr. Laura Targownik, MD, MSHS, FRCPC, Mount Sinai Hospital (Toronto), Departmental Division Director (Gastroenterology and Hepatology), University of Toronto gives a case study for when she would consider using two biologics for example: in a person with fistulizing Crohn’s disease, whose fistulas have responded well to biologic therapy, she would consider adding another biologic if they’re still experiencing inflammation in the intestinal lining. Dr. Targownik says medications such as vedolizumab (Entyvio) or an IL-23 such as risankizumab (Skyrizi), mirikizumab (Omvoh), and guselkumab (Tremfya) could help to bring IBD under control.
“As a gastroenterologist, I don’t want to discontinue the anti-TNF because I fear their fistulas will worsen, so it makes more sense for me to add in a well-tolerated biologic like vedolizumab or an IL-23 to try to bring the luminal disease under control,” said Dr. Targownik.
She went on to say that patients support the idea of combining therapy with different mechanisms of action if the safety profile makes sense. Most patients who are in a position where dual therapy would be considered are open to do what it takes to get their disease under control.
Corticosteroids and Other Immunosuppressants
This is not strictly speaking dual therapy because corticosteroids are always used short-term. But prednisone in conjunction with other immunosuppressants can quickly reduce inflammation while waiting for the slower effects of immunomodulators or biologics to set in.
A Look at DTT and IBD Research
Dr. Targownik says the VEGA and EXPLORER clinical trials shed light on the potential benefits of combining biologics.
The VEGA trials looked at the benefit of combining an anti-TNF (golimumab) and an IL=23 inhibitor (guselkumab) to induce remission in people with moderate-to-severe UC.
“The combination of golimumab and guselkumab outperformed monotherapy, with a 15 percent increase in the likelihood of clinical remission and a 20 percent gain in endoscopic response. Patients then received an additional six months of either golimumab or guselkumab monotherapy,” says Dr. Targownik and the group on the dual treatment had higher rates of improvement and remission.
This suggests that the deep remission obtained early through DTT might have a sustained effect, even if you step down to monotherapy.
“The EXPLORER-CD study was an open label trial looking at high-risk patients early in the course of disease,” says Dr. Targownik. They received a triple combination with adalimumab, vedolizumab, and methotrexate for six weeks. By the end of the study, 55 percent were in clinical remission, and 35 percent were in endoscopic remission. As there was no comparison arm, it is not clear whether these rates are higher than what would be expected.”
Consequently, the use of tumor necrosis factor (infliximab , adalimumab, etanercept, and golimumab) in combination with newer agents which target interleukin (IL)-12 and IL-23 (ustekinumab, UST), a4b7-integrin (vedolizumab, VDZ) or a4-integrin (natalizumab), has become an increasing area of interest in patients with disease that is not responding to treatment.
According to a systematic review looking at the efficacy and safety of DTT, “There is an urgent need to optimize treatments for patients” so that they have a better chance of remission, which unfortunately remains unachievable for a large number of people living with aggressive IBD. More research is needed to evaluate what the optimal drug combinations are, as well as dose and frequency to limit the burden of side effects.
The DUET trials are looking at people with Crohn’s disease and ulcerative colitis, much like the VEGA study, to compare the effectiveness of golimumab + guselkumab versus either drug alone. Interestingly, in this study, golimumab and guselkumab are combined in a single medication, so even though there are two active ingredients, it is delivered like a single drug.
“If we limit our discussion to combinations of modern advanced therapies, the combination of an anti-TNF and either vedolizumab or an IL-23 holds the most promise,” Dr. Targownik says. ”The other combination that we are seeing more is combining a JAK-inhibitor with an anti-TNF for people with acute severe UC, where the JAK-inhibitor is used in addition or in place of a corticosteroid trial.”
Personal Experiences on DTT
I’ve lived with Crohn’s since 2005 and luckily have been on the same biologic since 2008. I ran an Instagram poll that asked, “Have you been on dual-targeted therapy for your IBD?” Of the 320 people who responded, 40 percent said “Yes”, and 60 percent said no. Here are some scenarios they share:
Candyce has managed her Crohn’s with infliximab (Inflectra) and azathioprine since 2020. A 10-day hospital stay led her to dual treatment therapy after she received the recommendation from both her rheumatologist and her gastroenterologist. “My GI wanted to try to wean me off the azathioprine in 2022 after a clear colonoscopy, and I flared to the point of her wanting to hospitalize me,” she says. “But I managed to gain remission with prednisone and getting back on azathioprine, along with increasing my Inflectra dose to every six weeks instead of every eight.”
Risankizumab wasn’t doing the trick on its own to control Brad’s IBD, so his GI added 28 days of Rinvoq as an alternative to prednisone. He says, “This really worked wonders. Being on both risankizumab and Rinvoq put me into biochemical remission in less than 60 days.”
Samantha’s daughter, Eloise, was on tofacitinib and vedolizumab prior to her colectomy.She shares that more families are talking about dual therapy options. “The major issue is getting these medications approved from insurance, especially for pediatric patients. Our doctor was able to get us samples of Xeljanz from a local adult gastroenterologist because insurance would not approve it.”
Kate currently takes vedolizumab and upadacitinib to manage her IBD. Previously, many biologics failed her and vedolizumab was the only one that worked, but it did not address her perianal disease. “The Rinvoq is beginning to work,” she says. “However, I will say it caused awful acne (which I’m now on medication for). I’m not out of the woods yet, but I am functioning again, and I can tell that two medications are working on what needs to be healed.”
Courtney has been on Remicade and Azathioprine since 2020, prior to that she was on Humira and Azathioprine. She says, “I had no reservations because I was sick and willing to accept any option that might bring relief. My doctor explained to me that Azathioprine helps prevent antibodies to biologics. Regular blood tests monitor for more serious concerns.”
Along with her Remicade infusions, Lauren takes methotrexate orally each week.I don’t love it to be honest. I feel much more fatigued and nauseous with methotrexate added into the regimen.”
Initially, Danielle was put on azathioprine when she was on Remicade to prevent antibody formation and to help keep trough levels high. She explains, “When Remicade wasn’t working and I switched to Stelara, we decided to keep the azathioprine on since it didn’t give me any noticeable side effects. I have had some liver abnormalities with the azathioprine. So, I’ve had to have blood work and even an MRI of my liver to make sure everything is ok (it is). Now that I’m in remission with Stelara, my doctor gave me the choice of coming off the azathioprine, but I wanted to keep it on because I haven’t been in remission so long.”
Cait receives infliximab infusions, and she takes azathioprine simultaneously. “So far, I’ve noticed a massive difference in the healing of my perianal Crohn’s.”
Katie manages her IBD with Skyrizi and methotrexate. She says the combination makes her fearful at times. “I feel like it is a lot for my body to handle, and I have never been able to tell if that is a true feeling or something that stems from the thought of it. I also want to get off methotrexate within the next year or two to prepare my body for pregnancy. But this combo has provided me with full remission and the best I have felt in years.”
Final Thoughts to Consider Before Trying DTT
It’s important to discuss whether DTT could be for you with your specialized IBD care team as DTT comes with its fair share of risks and considerations. Combining medications can increase the risk of adverse effects, including serious infections due to greater immune suppression. Also, getting dual therapies approved through insurance can be complicated, making the cost and accessibility an issue for patients.
“It is challenging to get coverage for patients to use more than one advanced therapy at a time,” Dr. Targownik says, but not impossible. “Often if a patient has another autoimmune disease, I can get one medication approved for the IBD, and then the other for the other autoimmune disease like rheumatoid arthritis.”
The Takeaway
The effectiveness of combination strategies in IBD has been demonstrated in various studies, but these decisions need to be made on a case-by-case basis, considering your personal disease severity, response to previous treatments, and overall health status. If you are struggling with getting your IBD under better control with one therapy alone, speak to your IBD physician about other options.
There’s a BIG advancement that was just unveiled this week regarding nutrition and IBD. Nutritional Therapy for IBD, a non-profit dedicated to improving the lives and health outcomes of patients with Crohn’s disease and ulcerative colitis through evidence-based adjunctive nutritional therapy, launched their The IBD Nutrition Navigator™ to the public yesterday.
It’s a project that’s been in the works for two years and it’s the first nutritional tool of its kind! This FREE resource allows patients, caregivers, and healthcare professionals to work together to find the best nutritional approach on a personal level. This week on Lights, Camera, Crohn’s we hear from Kim S. Beall, Pharm. D., co-founder of Nutritional Therapy for IBD and Dr. Ashwin N. Ananthakrishnan MD, MPH, FACG, AGAF. These two, in collaboration with dozens of healthcare providers, designers, patients and volunteers, made this resource a reality for the IBD community.
What is the Nutrition Navigator™?
The design was led by Dr. Ananthakrishnan, Harvard graduate, Director of the Crohn’s and Colitis Center at Massachusetts General Hospital and one of the top GI clinicians.
“The IBD Nutrition Navigator™ is a groundbreaking algorithm-based tool designed to assist healthcare providers and patients in determining a personalized approach to using nutritional therapy alongside medication to optimize care,” he says.
“The tool is based on discussions that Dr. Ananthakrishnan has with his patients about nutrition and how it can be used in conjunction with medications and surgery to improve health outcomes. The IBD Nutrition Navigator™ is interactive and walks providers and patients step by step through six questions to assess not only the patient’s individual disease state and goalsbut also their interest in resources for nutritional therapy,” explains Kim.
The tool is designed for healthcare providers and patients to use together in shared decision making. Once completed, the tool recommends the best fit for an evidence based nutritional therapy. These recommendations are geared 100% to the individual based on how they answer the questions. As we all know, there is not a one-size-fits-all answer when it comes to IBD nutrition, and the recommendation is never nutrition vs medication. It’s using nutrition as another tool alongside medication and other therapies.
The inspiration behind the IBD Nutrition Navigator™
Dr. Ananthakrishnan, an esteemed member of Nutritional Therapy for IBD’s medical advisor board, is the inspiration behind the IBD Nutrition Navigator™.
“He discusses nutrition with his patients and uses nutritional therapy alongside medication as part of his regular practice. “What should I eat?” is the most common question for patients after an IBD diagnosis. But because every patient is different, there is not a “one size fits all” answer to that question,” says Kim. “Weeding through the abundance of nutrition information available can be confusing and time-consuming. Dr. Ananthakrishnan felt that we should provide more guidance to healthcare professionals in a simple, evidence-based, clinical manner. And thus, the idea for the IBD Nutrition Navigator™ was born.”
A closer look at nutrition and IBD
Nutritionaltherapies used alongside medication and/or surgery can help manage symptoms, aid healing, and reduce inflammation in IBD patients.
“For a long time, it was thought that diet didn’t even matter when it comes to managing IBD. We now have growing evidence that suggests that food does indeed matter as both a risk factor and a therapeutic option,” says Kim. “Patients struggle, however, with the abundance of nutritional information AND misinformation available. They may want to incorporate nutrition into their IBD management but don’t know where to start.”
Another very prevalent struggle is malnutrition. Patients are often afraid to eat new or certain foods for fear that those foods may cause pain or other symptoms. I know in my nearly 20 years living with Crohn’s disease I was considered malnourished during my initial diagnosis and hospitalization and was watched closely when I was losing weight unintentionally prior to acute flares in the past.
At a baseball game with my brother days before my Crohn’s disease diagnosis in 2005. Little did I know I was malnourished here.
Cool features of the IBD Nutrition Navigator™ to highlight
Years of planning went into the development of the IBD Nutrition Navigator’s clinical algorithm, so the information you will find on the tool is all evidence-based and thoroughly reviewed by medical advisors.
“There are so many thoughtful features of this practical tool. First, while the development of the IBD Nutrition Navigator™ was quite complex, the result is a very straightforward, simple-to-use, interactive questionnaire. Because the tool is so concise, it can be easily used during a regular appointment with a healthcare provider. Two of the six questions gauge the patient’s interest and resources in using nutritional therapy. These questions evaluating the feasibility of and readiness for change are what makes the tool particularly unique and comprehensive. As patients and healthcare providers progress through the IBD Nutrition Navigator™, the suggested nutritional approaches appear on the screen and will adjust in real time. You can see how your answers to the questions may modify the dietary options.” says Kim.
Finally, once the recommended nutritional approach is selected, there are links to extensive resources from Nutritional Therapy with IBD to help you learn about incorporating that approach and even a recipe database with diet-specific dishes.
Tips for taking the information learned and discussing it with a registered dietitian/GI
The IBD Nutrition Navigator™ is designed to facilitate nutrition conversations between patients and healthcare providers, including registered dietitians who play a significant role in this process.
“Before using the tool, patients and healthcare providers must acknowledge that a full clinical assessment—including screening for malnutrition and eating disorders—is the necessary first step. The addition of or changes to nutritional therapy should always be made through shared decision-making between the patient and healthcare provider,” adds Kim.
Patients or caregivers interested in nutritional therapy can print this flyer to take to their provider. The QR code provides a link to Nutritional Therapy for IBD’s website where you will find the IBD Nutrition Navigator™ and many other evidence-based nutritional resources.
Final Thoughts
The IBD Nutrition Navigator™ aims to provide healthcare professionals and patients with a tool that helps us choose the right, individualized nutritional therapy to use alongside medication and/or surgery and optimize care. Once you discover the best nutritional fit, patients can gain confidence in their food choices and ultimately improve their overall health and healing.
I wish when I was diagnosed with Crohn’s in 2005 that I had a tool like this at my fingertips. A dietitian (who was not well-versed on IBD) told me I would never eat raw fruit or vegetables again and it felt like doomsday. I was overwhelmed, and at age 21, days after being given a chronic illness diagnosis, that advice devastated me. Our community is incredibly fortunate to have a tool like this so we can feel more in control and more empowered to make appropriate dietary changes that are personalized to our care and tailored to fit our ever-changing treatment plan. In addition to the IBD Nutrition Navigator™, this volunteer-led organization provides a wealth of information and resources about nutrition and IBD on its website. Click here to learn more.
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