When you’re living with a chronic illness like Crohn’s disease or ulcerative colitis, it’s easy to become hyper-aware of every medication, every symptom, and every nutrient—or lack thereof. One essential mineral that often flies under the radar is magnesium.
Magnesium supports nerve function, hormone balance and how we respond to stress, so when levels drop, the nervous system can become overly reactive. For those with Inflammatory Bowel Disease (IBD), these symptoms can be even more noticeable because our bodies often struggles to absorb and retain magnesium properly.
According to Hollie King, Founder of Sweet Bee Organics, this humble mineral could be one of the most powerful tools in the IBD toolkit. This week on Lights, Camera, Crohn’s Hollie explains why magnesium matters so much for people in our community.
While I was working on this article, I did an Instagram poll asking the IBD community if they take a magnesium supplement. Of the 245 people who responded, 34% said “yes”, 29% said “no”, and 37% replied “should I be?”
The power of Magnesium
“Magnesium is one of those quiet powerhouses in the body,” Hollie explains. “It’s often overlooked, but absolutely essential. It plays a role in over 300 biochemical reactions, helping muscles relax, supporting proper nerve function, balancing hormones, and aiding energy production.”
When magnesium levels drop, your body knows it—but it doesn’t always scream it out loud. Instead, it whispers. Symptoms like anxiety, poor sleep, muscle cramps, low energy, and even restless legs may emerge. But there are subtler signs too: eye twitching, heart palpitations, tingling sensations, and a hypersensitivity to noise or stress.
For those with IBD, particularly Crohn’s disease, magnesium deficiency can be even more pronounced. “When the gut is inflamed or damaged, it struggles to absorb nutrients properly,” Hollie shares. “And magnesium is one of the first to drop.”
The Magnesium–IBD Connection
Recent research, like the article “Magnesium—A Potential Key Player in Inflammatory Bowel Diseases?” published in the Journal of Inflammation Research, highlights the strong link between magnesium deficiency and IBD. But knowing you’re deficient and being able to do something about it are two very different things, especially if your gut can’t absorb it well.
That’s where Sweet Bee Organics comes in. Rather than relying on supplements taken by mouth, Hollie and her team focus on transdermal support—a method that completely bypasses the digestive system.
“Our Sweet Sleep Magnesium Butter delivers highly absorbable magnesium chloride directly through the skin,” Hollie says. “You simply massage it into your chest, feet, lower back, or even your tummy before bed. It’s not just about topping up magnesium—it’s about calming the nervous system, supporting sleep, and helping the body reset.”
The Sweet Sleep Magnesium Butter isn’t just effective—it’s a best-seller across the U.S. and U.K. for a reason. “We’re obsessed with packing as much magnesium as possible into our balm,” says Hollie. “It’s not easy, but we’re committed to delivering a product that works—and works quickly.”
For people with Crohn’s or ulcerative colitis, the benefits of restoring magnesium levels can be profound. Balanced magnesium supports better digestion, improves sleep, reduces muscle tension, steadies mood swings, and even eases PMS symptoms. You sleep better. You feel calmer. Your energy becomes more stable, and your muscles feel less tight or twitchy.For IBD patients in particular, it can help calm inflammation and improve nutrient absorption—essential steps in managing the day-to-day symptoms of the disease.
“It’s not a magic fix, but it’s one of those foundational nutrients that helps everything else work better. The biggest thing people notice? They just feel more like themselves again,” Hollie explains.
Hollie’s Health Journey
This mission is deeply personal for Hollie, who was diagnosed with aggressive cervical cancer and had to completely reimagine how she cared for her body. “Magnesium became an important part of my healing journey. It wasn’t just about sleep or stress—it was about helping my body heal, rebuild, and feel safe again.”
Screenshot
Hollie happens to be my husband’s first cousin—and witnessing her health transformation and all she’s accomplished since her cancer diagnosis has been awe-inspiring. We’re not only family, but friends and I admire her and the genuine work she’s doing. We’ve wanted to collaborate for awhile and when Hollie saw the recent published medical study regarding magnesium and IBD we knew this was the perfect opportunity.
Hollie and I took our kids trick or treating this past Halloween when she was back in the States
Her empathy extends to the IBD community. “For anyone living with IBD, I truly see you. I know how exhausting it can be to manage symptoms, juggle treatments, and wonder if your body is even absorbing what it needs. That’s why I created Sweet Bee. Magnesium might seem like a small thing, but sometimes the smallest shifts are the ones that change everything.”
How is Magnesium Measured—and Why the Standard Test Might Miss the Mark
Many of us assume a blood test will tell the full story, but Hollie points out that traditional serum magnesium tests only measure about 1% of the magnesium in your body.
At my clinic visit with my GI last week, my doctor included magnesium in my lab work and the results were within range, but he also told me there would be no harm in using the transdermal magnesium discussed in this article.
For people with IBD, especially those experiencing persistent symptoms, your GI may suggest testing beyond the standard serum magnesium draw or even recommend supplementation based on symptoms alone. This may be something you want to bring up during your next clinic visit or over the Patient Portal.
How to Naturally Raise Your Magnesium
While supplements are helpful, diet is still key. Magnesium-rich foods include:
Pumpkin and chia seeds
Almonds, cashews, and peanuts
Beans and legumes
Spinach, broccoli, and potatoes with skin
Whole grains like oats and brown rice
Avocados, bananas, raisins
Milk, yogurt, and soy milk
Salmon, halibut, chicken, beef
Fortified cereals
That said, people with IBD often can’t rely solely on food due to absorption challenges. This is where topical support like Sweet Bee’s magnesium products truly shine.
Can You Take Magnesium with Crohn’s or Colitis?
Yes, but with care. Magnesium—especially in forms like citrate—can cause loose stools, which is problematic for IBD patients. That’s why topical magnesium is often a safer, more effective choice.
Always consult with your gastroenterologist before starting new supplements, especially if you’re in an active IBD flare, dealing with kidney disease or if you’re concerned about the medication(s) you are on.
Final Thoughts
In the landscape of IBD care, it’s easy to feel overwhelmed. But as Hollie reminds us, simple, natural tools—when thoughtfully applied—can offer real relief. Whether you’re struggling to sleep, feel calm, or just want to feel like yourself again, magnesium might be what your body’s been craving.
“You deserve to feel strong, rested, and well in your body. Replenishing magnesium levels in a gentle, non-irritating way can make a real difference in how you feel, both physically and emotionally,” Hollie says. “And we’re here to support that every step of the way.”
Learn More About Sweet Bee Organics
To explore Sweet Sleep Magnesium Butter and other clean wellness products created with love and integrity, click here. Use code NATALIE15 for 15% off sitewide.
Sweet Sleep was recently spotlighted on The View Co-Host’s Favorite Things for Mother’s Day. Check out the segment here.
Disclaimer: This article was not sponsored, but the content is for informational purposes only and does not replace professional medical advice. Always consult your healthcare provider before starting any new supplement.
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.
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.
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.
Many women with Crohn’s disease or ulcerative colitis are diagnosed during peak childbearing years. Despite ongoing advances and strides in research, many questions remain about female fertility as it relates to IBD. This inspired Dr. Marla Dubinsky, MD and Dr. Zoë Gottlieb, MD at Mount Sinai Hospital in New York and Dr.Eugenia Shmidt, MD at the University of Minnesota to create The Women with Inflammatory Bowel Disease and Motherhood (WIsDoM) study. Since launching at Mount Sinai and the University of Minnesota in 2023 about 170 women with IBD have participated, and thanks to a generous grant from the Helmsley Charitable Trust, WIsDoM will continue to enroll participants until the end of August 2025. The goal—to enroll about 500 women across the United States and Canada by the end of next summer.
This week on Lights, Camera, Crohn’s we hear from these leading trailblazers in the IBD field to learn more about their aspirations for this monumental research study and how you can get involved.
The inspiration behind WIsDoM
Dr. Dubinsky and Dr. Gottlieb tell me they care for hundreds of women with IBD who are considering pregnancy, including those with a history of IBD-related surgeries.
“These women, along with their partners and families, often ask how their IBD or surgical history might affect fertility. Unfortunately, the available research on this topic is limited. Much of it comes from retrospective surveys or large database studies, which fail to give us a complete picture,” says Dr. Dubinsky. “Additionally, most of the existing data focuses on women who’ve had open J-pouch surgery for ulcerative colitis; given that many IBD surgeries, including J-pouches, are now done laparoscopically, this information is often not relevant to our current patients.”
They recognized the need for more comprehensive, up-to-date data to help answer these important questions to allow them to provide the best possible guidance for family planning to their IBD patients.
“Unlike previous research, WIsDoM gathers detailed, long-term data, allowing us to better understand the impact of IBD on reproductive health and identify potential risk factors impacting fertility in this population,” Dr. Dubinsky explains.
Main questions about female fertility and IBD that remain
We currently have limited information on how most IBD surgeries, other than open J-pouch surgery, may affect female fertility.
“Many of our patients with IBD have undergone other types of surgery, such as subtotal colectomy or small bowel resection, but we don’t yet know how these procedures might impact fertility. In addition, there is very little data on how other factors—such as the type of IBD, medications, the length of time someone has had the disease, other health conditions, family history, or sexual health—could influence fertility. Our goal is to give women a thorough understanding of how their IBD, along with their overall medical, social, and reproductive histories, might affect their ability to become pregnant,” Dr. Gottlieb says.
Who can participate in the WIsDoM study?
You must be:
A woman with IBD
Aged 18 to 45 years old
Planning to become pregnant in the next 15 months
Able to consent to participation
Live in the United States or Canada
Click here to hear from Dr. Dubinsky and Dr. Gottlieb firsthand.
What does participation involve?
When women join the study, they will be asked to complete an initial questionnaire that covers their IBD, surgical, medical, reproductive, sexual, and social histories. This will be the longest form you need to fill out and may take about 15 to 30 minutes, depending on your individual experiences. After completing the form, participants will receive a $50 gift card. You will also be asked to help obtain some of their medical records so additional information can be gathered about your health history.
“Once they are enrolled, participants will receive a survey each month. In this survey, they’ll be asked whether they’ve tried to conceive, whether they became pregnant, and if there have been any changes in their IBD, surgical, or reproductive health since the last survey,” says Dr. Gottlieb. “They’ll also be asked to describe their IBD symptoms, including whether they’re experiencing a flare-up or if their condition is well controlled. Participants will continue to receive these surveys monthly until they reach 12 weeks of pregnancy or until the study ends in July 2027, unless they choose to opt out.”
When the study ends (either at 12 weeks of pregnancy or the study’s conclusion), participants will receive an additional $50 gift card. If you become pregnant and experience a pregnancy loss, or if you become pregnant, have a baby, and wish to try for another pregnancy during the study period, you can re-enroll and continue participating.
Being proactive with family planning
When women and their families have a clear understanding of how their IBD, surgical, and medical histories may affect fertility—based on comprehensive, real-world data—they can make informed decisions about seeking fertility help sooner.
“This early guidance can help them get the support they need during the family planning process and avoid unnecessary delays in trying to conceive naturally if it seems unlikely to be successful. At the same time, it will also allow us to reassure some women that their fertility is likely to be similar to that of women in the general population, helping them avoid the financial burden of fertility treatments until they truly need them,” says Dr. Dubinsky.
Final thoughts
Through WIsDoM, we have a unique opportunity to make a meaningful difference in how women with IBD receive guidance about pregnancy and family planning. By gathering important data over time and using this to predict a patient’s risk of reduced- or infertility, medical providers can offer early support, including information on how surgery might affect fertility before a patient undergoes an operation.
“We hope that our findings will help change how healthcare providers support women with IBD when it comes to fertility, especially in terms of knowing when to refer patients to a fertility specialist. Currently, there are few clear guidelines on when to make these referrals, and we believe that, too often, we wait too long to offer women the support they need to conceive,” says Dr. Gottlieb. “This delay can impact their family planning and create unnecessary emotional and financial stress. Our goal is to use the data we gather to develop a risk calculator that will help us assess each patient’s individual risk for fertility issues, allowing us to refer them to the right resources earlier and give them the best chance to become pregnant successfully.”
Every patient deserves the most accurate and evidence-based information to make informed decisions about their family planning, and the hope is that WIsDoM will provide this valuable insight for women with IBD. As an IBD mom of three following bowel resection surgery, knowing that research like this is underway for current and future families does my heart good. By participating in IBD studies like WIsDoM, you help paint a clearer picture for how patients and families can be most supported during family planning and beyond.
Interested in learning more about WIsDoM and getting involved:
**This article has also been published on Tina’s blog: Own Your Crohn’s**
As two bloggers and patient thought leaders in the IBD community, we were thrilled and honored to attend and speak at the Advances in IBD conference in December 2024 in Orlando, Florida. In the article below, we come together to summarize key learnings for our IBD patient and caregiver community.
Management of Crohn’s Disease
Crohn’s can be a very progressive disease, meaning it can worsen over time and cause complications, often leading to fistulae, strictures, and therefore surgery and bowel loss. In a debate between two of the co-chairs, Dr. Miguel Regueiro and Dr. Corey Siegel, as well as throughout AIBD, a key theme was to understand if all Crohn’s patients need advanced therapies (biologics or small molecules) to prevent complications. A good suggestion was to identify those few patients who could be closely monitored but not necessarily put on an advanced therapy. The doctors agreed that almost all patients do need an advanced therapy to prevent progression of the disease. Dr. Siegel brought up an interesting point about risk-stratifying patients via a new blood test called CD-PATH, which allows physicians to better understand if a patient might be low-, medium-, or high-risk for progression of Crohn’s disease.
The conclusion at the conference was that early intervention has made a big difference in terms of improving long-term outcomes for patients. It was shown that there is an optimal time for treatment and missing that window can lead to progression of disease and potentially complications.
From stem cells for perianal Crohn’s to more options for fibrostenotic Crohn’s, many patients are waiting for more therapeutics to gain better quality of life. Patients, however, are also clamoring for more therapies for mild Crohn’s disease. There is a real void in treatment options for mild Crohn’s outside of dietary therapies and occasional use of steroids (< 1-2x a year). As patients ourselves, we advocate for more options whether that’s looking at S1Ps or new therapeutics that can help patients feel safe & comfortable that their disease is being treated.
Management of Ulcerative Colitis
In Dr. Millie Long’s talk on Defining Disease Severity in UC, she shared many pearls. Primary indicators of severity include appearance severity of disease on endoscopy and frequency of use of steroids (more often means another long-term therapy may be needed to quell inflammation). She said to also consider biomarkers (fecal calprotectin, C-reactive protein, etc.) and to keep in mind what prior therapies have been used. Dr. Long emphasized that UC can also progress like Crohn’s, and it is important to use treat to target strategies, including initiating therapy early, monitoring for disease activity using biomarkers and intestinal ultrasound, and aim for mucosal healing.
In Dr. Maia Kayal’s talk on what meds to consider if Mesalamine doesn’t cut it in UC, her key take-home message was, “Your first shot is your best shot.” She said it was important to plan wisely if you have mild to moderate UC and work carefully with your gastroenterologist to identify medication options. Dr. Kayal emphasized that certain biologics may be more effective as a first-line therapy rather than being used after one or two biologics haven’t worked, so to choose carefully. Even if mesalamine doesn’t work, there are multiple biologic options from anti-TNF agents to anti-IL-23 medications, and S1P receptors.
CurQD & IBD
Throughout the conference, CurQD received many notable mentions, which in randomized clinical trials showed efficacy in mild to moderate UC when mesalamine hasn’t cut it. CurQD is a naturally sourced formula. Cura is gut-directed form of curcumin that has been found to reduce inflammatory cytokines, restore barrier function, and positively alter the composition of the gut microbiome. QD (Qing Dai) is an extract of Indigo plants found in clinical trials to relieve bleeding, inhibit inflammation, and promote mucosal regeneration (Naganuma et al, Gastroenterology 2018, Ben-Horin et al, CCFA 2023). Dr. Kayal shared this placebo-controlled trial, that found CurQD was effective for inducing response and remission in active UC patients and has the ability to significantly decrease urgency.
Dr. David Rubin also touted CurQD as an adjunctive IBD therapy option, rather than a singular therapy, much like diet. He said while it may be beneficial, patients need to be cautious about sudden pain or obstructive-like symptoms and communicate how they’re feeling with their doctor.
Insurance barriers
Patients and providers have an uphill climb when dealing with insurance barriers, which makes managing IBD exceptionally challenging and at times frustrating for everyone involved. These proverbial hula hoops we’re all constantly forced to jump through often lead to delays in treatment and unnecessary stress. One key challenge discussed during this session was how to deal with insurance companies denying patients who have not tried 5-ASAs or steroids. Solutions shared included the GI office providing detailed documentation on the following:
listing previously tried and failed medications including steroids,
recent objective findings on endoscopy, imaging, blood tests,
sharing symptoms experienced by the patient,
referencing guideline recommendations, and
outlining the risks to the patient and the costs to the insurance company if treatment is not initiated soon.
Patients can also proactively reach out to their insurance company to determine their preferred advanced therapies and pass that intel along to their IBD team.
Another common roadblock discussed was finding out a medication is not covered or no longer covered by insurance—whether it be biologic vs. biosimilar of off-label dosing.
Patients can discuss appealing the decision with their IBD team during clinic appointments, over the Patient Portal, or over the phone. If your first appeal is denied, keep close tabs on your quality of life moving forward. If you are forced to switch, keep a detailed journal of all your symptoms to paint a clear picture of your reality.
Ask about having your GI submit a letter written by you about your patient experience, along with theirs, and make sure a doctor with knowledge of immune-mediated conditions is reviewing the appeal at the insurance company.
Providers can be supportive by showing empathy, following the latest research and including studies within insurance appeal letters. If a person is symptomatic, it would be important to rule out whether it’s active disease or an adverse reaction to medication.
Biosimilars now and in the future
The landscape for IBD therapies has changed immensely in recent years and will continue to do so in the years ahead. Stelara will join Remicade and Humira in 2025 with six biosimilar options for patients (and insurance companies). One of the main areas of improvement lies in patient education. Oftentimes we hear about the switch through a letter from our insurance company or we’re blindsided at an infusion appointment and told by our nurse that we’ll be receiving the biosimilar moving forward. As should be expected, this results in a great deal of uncertainty, skepticism, and pushback from the patient and caregiver population.
Biosimilars are biologic medical products that are highly similar to an already approved reference biologic, with no clinically meaningful differences in terms of safety, potency, or efficacy. Unlike generic drugs, which are chemically synthesized and identical to their branded counterparts, biosimilars are produced using living organisms and exhibit minor natural variability.
Dr. David Choi presented about how important proactive discussions with the patient community area to instill confidence and help educate about how safety and effective biosimilars are. Currently, four adalimumab and two Ustekinumab drugs have interchangeability, which is a designation from the FDA that allows for patients to be automatically switched (originator drug substituted) at the pharmacy level. Dr. Choi shared that providers can avoid this automatic substitution by selecting “dispense as written” on the original prescription. He went on to share that while improving access, there is also a major cost savings. Biosimilars across all disease spaces are expected to save $38-$124 billion from 2021 to 2025. The future of biosimilars is happening right now with exclusivity for golimumab and certolizumab over in 2024 and with more biosimilars in development.
Final thoughts from AIBD 2024
Overall, the main theme throughout all the educational sessions was that IBD needs to be more than just managed, it needs to be overcome with shared patient decision making. More work needs to be done to determine which patient is right for which therapy. There tends to be too much focus on the risk of therapies, rather than the risk of uncontrolled disease. The overarching goal is for providers to identify high-risk patients before we have severe disease and not be hesitant to use surgery as a treatment option when necessary. Emphasis on the importance of re-thinking the role of diet and nutrition and mental health care in conjunction with advanced therapy, looking at biomarkers 10+ years before diagnosis to see if we can prevent or diminish disease severity, utilizing intestinal ultrasound to measure drug response and disease activity in a non-invasive way, and continuing biologics in pregnancy (Healthy mom= healthy baby) were common themes throughout this fantastic conference.
As patients, we remain hopeful for the future of IBD and committed to improving patient outcomes. Lots of work still to be done, but it is impressive to see how far the science has come in the last 19-20 years since our diagnoses!
If it’s happened to you, you know the feeling all too well. When I received a letter in the mail informing me that the biologic injection, I had been on for 16 years was no longer going to be covered, my stomach flipped, and my heart sank. When you live with a complicated disease like Crohn’s or ulcerative colitis and find a therapy that keeps your health in check and your IBD well-controlled, it’s extremely stressful and daunting to face the worry of being forced to switch your medication to a biosimilar or a different biologic all together.
Like many patients, I asked my gastroenterologist to appeal the forced medication switch. Even though I was almost positive we would be denied, I did not want to go down without a fight. As expected, within days of my GI’s appeal, we were told by insurance that Humira would no longer be covered and that I would need to choose a biosimilar or a different drug class all together moving forward.
I chose to go on the biosimilar Hyrimoz for many reasons—the first being that anti-TNF drugs have worked well for me for YEARS, by choosing to go off it and switch to a different drug class, I ran the risk of building up antibodies and possibly not responding as well to treatment. I also have a comfort level with self-injections and know how I have typically responded to anti-TNF medication in the past.
The emotions and heartache of having to say goodbye to a medication that carried me through for 16 years, allowed me to bring three healthy babies into this world, and stay out of the emergency room and hospital since becoming a mom 7.5 years ago tore me apart. I sobbed. I stressed. I was anxious.
Switching to a biosimilar—the emotional and physical toll
Much to my dismay, I started Hyrimoz in July 2024. The first eight days I felt the same and then my health began to crumble. I lasted four injections—and during that time I went from being in deep remission for years to needing pain medication to make it through elementary school PTO meetings and while coaching my kindergarten soccer team. I went from feeling well most of the time to running to the bathroom 15+ times a day and almost having accidents in public. I went from being able to eat whatever I wanted to worrying about how consuming anything was going to make me feel. I spent nights curled up in pain and days feeling bloated and on edge about whether every decision I made was going to make me unwell.
I knew something had to change. I refused to have my quality of life ripped from me without speaking up. I kept a detailed journal every single day since I started the biosimilar. I articulated my concerns to my care team repeatedly over the Patient Portal. We ran extra labs, I did a telehealth appointment, I spoke with GIs around the United States I have come to know and trust through my patient advocacy work. My care team told me that meeting in person for a clinic appointment or over telehealth would help build our case, as that carries more weight than just communicating over the Portal. Keep that in mind.
This week on Lights, Camera, Crohn’s I offer tips for building your case, writing your appeal letter, and making sure your voice is heard. Patients are constantly made to feel less than. It’s all about the profits and not about the patients. This needs to stop. Insurance companies and specialty pharmacies need to stop making our lives so damn difficult and start to recognize the havoc they cause by delaying treatment, blocking treatment options, and forcing us to change a medication that finally controls our disease. Living and managing chronic illness is a full-time job in this country. The hours and days wasted and spent on the phone dealing with all the red tape is an absolute nightmare, and unless you’ve experienced it, you have no clue the headaches it causes, the time suck it is, and how it puts the quality of our lives in jeopardy.
Keeping track of it all
When living with IBD, the bad days come and go and oftentimes we forget just how often or how horribly we feel because our “normal” is not normal. By journaling or writing in the Notes app on your phone anytime anything with your health is awry, this helps paint a clear picture for not only you, but your providers. If you can say, “On Tuesday, September 24th I went to the bathroom 10 times, I couldn’t eat, I had joint pain in my hands, and abdominal pain that required a heating pad”—this illustrates the complexity of your symptoms. Imagine having that type of intel for two months. These details help your appeal in a big way. My IBD Nurse told me that she believes my typed-out symptom journal made all the difference in winning our second appeal.
So, take notes and be as descriptive as possible. If you have a random headache and you’re not sure why, write it down. If you get new pain, you haven’t experienced before keep track of it. If you eat and must run right to the bathroom or start feeling pain jot it down.
Many of my symptoms I’ve dealt with since switching to the biosimilar feel exactly like a Crohn’s flare. After weeks of this, I started to freak out that I was losing my remission all because of a forced medication switch. A world-renowned GI took the time to call me as I was making dinner for my family one night to hear more about my situation. He did this out of the goodness of his heart to provide additional guidance and support. After hearing more about my situation, he believed it was my body having adverse side effects to the biosimilar rather than a Crohn’s flare, since my labs were checking out fine. Everything started to make sense. While he wasn’t sure our appeal would be granted, he listened and empathized with what I was going through.
Writing your own appeal letter
My IBD team recommended I also write a patient letter that they would include with their second appeal. I was happy to take the time to offer my voice and share what the experience of being on a biosimilar was like for me. At the same time, I had never written an appeal letter. Before I started I did my research on how to approach and craft the wording.
I made sure not to come off angry or accusatory. I kept the letter as professional as possible, while also explaining very clearly how horribly I was responding to the medication. I backed up my letter with science and attributed research that’s been done regarding biosimilars. I learned from research published in the Journal of Crohn’s and Colitis (2020) that while around 80% of patients have a seamless transition, 10-20% have a negative response. It’s important to note that just because you are switched to a biosimilar, does not mean your health will deteriorate. Many people thrive and don’t notice a difference, but the issue is—you don’t know how you are going to respond. I went into the transition with an open mind and as positive as possible, but the unknown looms over and it’s emotionally draining to constantly wonder if you are going to feel unwell because of the forced switch.
Tips for expressing yourself in the appeal letter
I will use Humira as an example since that was my experience, but this goes for any biologic/medication.
Start with basic information—your name, date of birth, insurance ID number, and the policy number.
Provide the name of the medication you’ve been switched from (in my case Humira) and the one you’ve been switched to (Hyrimoz).
Mention the date when the change was made.
Clearly state the purpose of the letter. For example, “”I am writing to formally appeal the decision to switch my Crohn’s treatment from Humira to Hyrimoz.”
Briefly provide an overview of your health history with IBD, diagnosis date, and the treatments you’ve tried, hospitalizations/surgeries. If you’ve been on the same treatment for years and it’s helped you, highlight how effective the therapy has been. Mention the stability you’ve achieved with Humira—humanize your story. For instance, “While on Humira I was able to work full-time, have three healthy pregnancies and babies, and be a mom without my health holding me back.”
Reference any previous experiences with other medications that may have failed you or caused side effects.
Emphasize the risk of switching medications after long-term success. For IBD patients, changing medications can result in loss of response, worsening of symptoms or disease progression, potential adverse reactions.
Have your gastroenterologist provide their own letter that emphasizes the risks of switching, the stability you’ve achieved, and their professional recommendation. They will reference any studies that are available and be able to provide medical records showing your history on the medication.
If applicable, reference and cite insurance company policies that include provisions for medical necessity, or any pre-authorization that was previously approved.
Emphasize the impact on your health and finances and highlight the potential cost to both your health and your insurance provider if switching leads to disease flare ups, complications, hospitalizations, or the need for additional screenings, scopes, or treatments.
Close with a strong, respectful request. End the letter with a clear statement, such as:
“For the reasons stated above, I respectfully request that you reconsider your decision and allow me to remain on Humira as prescribed by my doctor.”
I signed my letter:
My family deserves more and so do I.
Sincerely,
Natalie Hayden
Ironically, when I wrote my appeal letter I was dealing with horrible abdominal pain, lying in bed with a heating pad.
Finding out we won the appeal
Once my appeal letter and journal of symptoms were finalized, I sent them to my GI and IBD nurse over the Patient Portal. I was on pins and needles wondering what was going to come next. I sent over the materials on a Friday morning and the following Monday, I received word from my nurse over the Portal that the insurance denied the 2nd appeal because back in June when my GI submitted the first appeal, he deemed it “urgent”—in doing so, the insurance company considers those appeals “2nd level appeals”—if those are denied, they consider the case closed. Imagine that— “closing a case” before a patient has even started a different medication. Makes sense…right?! Can’t make this stuff up. When I heard this, I felt incredibly defeated.
My care team was unaware of that and asked for a clinician to review our materials—the insurance company agreed and said there would be a decision in 72 hours. That same night, while I was making dinner for my family, I received an email from CVS Specialty pharmacy saying my prior authorization for Humira had been approved. I couldn’t believe my eyes. I’ll never forget how it felt to see those words and read that email.
My kids all smiled and laughed and danced with me, no idea what was really going on. But the celebratory moment was so incredibly jubilant they were smiling ear to ear. These last two months they’ve witnessed me unwell way too many times. It’s a side of my Crohn’s I’m not sure they even knew existed prior to now.
This past Friday night the same abdominal pain I’ve been dealing with began as the kids got off the bus. I had to take a pain pill before an advocacy call that was ironically about How to Deal with Insurance—for an upcoming panel discussion at a medical conference I’m speaking at in December. After my call and rushing through a makeshift meal, I took all three of my kids to my son’s soccer practice and told my friends on the sidelines how sick I felt. I came home and had to take another pain pill, had difficulty with the bedtime routine, and laid on the couch with a heating pad. But it helped to know these shitty days will hopefully be ending.
Looking to the future
This blog article is coming out the same day as I go back on Humira after winning my insurance appeal. While it’s a big win for me, it’s a small win for our community because at the end of the day an incomprehensible number of people are forced off their medications or denied off-label dosing, all so insurance companies see a better bottom line. As patients we can’t stand for this. Medical providers should and need to have the FINAL say in what medications their patients are on and they should always be willing to go to bat for their patients and appeal even if they “know they’ll get denied.” I hear all too often from fellow patients that their GI won’t even appeal in the first place and does not empathize with the fear of being forced on a biosimilar.
For those providers, I ask…can you guarantee, 100%, no doubts whatsoever that your patient will thrive and do just as well on a biosimilar as they did their originator biologic? Does the benefit really outweigh the risk? Should IBD patients who already live with an unpredictable and complicated chronic illness have to endure the stress, medical trauma, and anxiety that result from forced medication switches or denials related to off-label dosing?
As patients, caregivers, and medical providers we are a team. We know what’s right. Doctors and nurses should not have to waste so much energy on fighting for off-label dosing, necessary treatments, and keeping their patients on medications that are working. A HUGE thank you to all the providers and nurses who go above and beyond and out of their way to fight for us and do everything in their power to make sure we receive the medical treatments we need to keep our IBD in check. Your efforts, whether successful or not, are not going unnoticed.
At the end of the day, the big argument is all about “accessibility” and “cost savings” in the United States, but are patients really reaping this benefit here? I paid at most 0-$5 for Humira injections, I paid $0 for Hyrimoz. Do you know how I paid? I paid with living more than two months with health issues that would bring the average person to their knees. I went from being in deep remission to re-living the trauma of how unpredictable life with IBD can be. I paid by being on a biosimilar for 71 days and spending more than half of them with debilitating pain and symptoms.
Big pharma can step up to the plate and lower their absurd pricing on biologics (originator drugs) so that biosimilars are of no monetary benefit to pharmacy benefit managers. Let’s make it an equal playing field and see what happens. Would Big Pharma rather lose all their patients because their biologic is being removed from the insurance formulary or keep patients, lower their costs of the drugs, and keep insurance companies from choosing biosimilars because it saves them money?
As a vocal IBD patient advocate and leader, I understand and feel for those who haven’t been able to go back on therapies or receive different dosage recommendations they depend on for their well-being. While I’m thrilled to be back on my biologic, now I have the worry about whether my body will respond the same as it did previously.
The medication I’ve depended on for 16 years to bring me comfort is finally back in my fridge and going to be back in my body today. The prior authorization lasts one year, so I’m not sure what the future will bring, but I’m focused on getting my health back on track right now and worrying about that later. I’m grateful my energy in dealing with my own appeal is over and now I can pour my efforts into trying to drive change for our community. We all deserve so much more. Let’s go after what is right and make forced medication switching and off-label dosing delays and denials by insurance companies illegal in the United States.
Imagine in a quick twist of events you go from having a wonderful day to dealing with IBD symptoms. Suddenly you go from feeling “fine” to having pain that’s gotten your attention quickly. You’re bloated and could pass for being 5 months pregnant, nothing sounds appetizing, you’re scared eating or drinking will further exacerbate your symptoms. The mere thought of ingesting anything makes you a bit nauseous. All your attention and focus is on tolerating the pain. Now pause.
It’s no surprise these symptoms significantly impact food choices and nutrient intake, as we’re forced to navigate the delicate balance between managing discomfort and maintaining proper nutrition. Understanding how GI symptoms influence dietary decisions and implementing strategies for managing these symptoms is crucial for IBD patients to ensure overall well-being.
Even as a veteran Crohn’s patient of nearly 20 years, I’ve been struggling to manage my diet while living with unpredictable painful symptoms that started to arise when I was put on a biosimilar medication in July 2024. I’ll be honest, lately when I’ve been dealing with abdominal pain and bloating, I’ve been refraining from eating. Turns out—surprise, surprise… that’s the last thing any of us should be doing. This week on Lights, Camera, Crohn’s hear from trusted registered IBD dietitian and ulcerative colitis patient extraordinaire, Stacey Collins, about how we can better navigate these challenges.
How have GI symptoms influenced your food choices?
If you’re in an active disease flare and dealing with an inflammatory response, you need protein and calories to overcome any risks for malnutrition. So how can we go about getting enough calories?
“Liquid calories aren’t always the tastiest—but smoothies and even nutrition shakes can be beneficial for those dealing with IBD symptoms and teetering on the line of a full-on flare. When you’re feeling well, try to designate part of one day a week where you make soups and smoothies ahead of time that you can freeze as a rainy-day investment to help you out on days when you aren’t able to expend the energy to prepare food,” says Stacey.
She also suggests “taking a holiday” from gut-health supplements you take—it’s not all or nothing. Take a break from your probiotic, prebiotic, anything that “helps with inflammation,” and enzymes (unless prescribed by your physician explicitly), and let your body relax from the burden of taking too many supplements.
Rather than avoiding eating altogether, which feels like the right thing to do when you’re in discomfort, try to maintain a consistent routine of eating to nourish your body to heal from a flare and avoid excess discomfort.
Our hypersensitive guts
When you live with IBD and you have a history of inflammation, visceral hypersensitivity, or an increased pain perception in the bowel, is a key factor to take into consideration.
“Acknowledge that a smoke alarm is going off, and then try deep belly breathing if that’s an accessible movement for you. I often tell people to lay down on the floor. If you have children, invite them to join! They can lay down beside you and do this exercise with you. Together, you can select a favorite toy or teddy bear: one for you and one for themselves. Put the bear on your belly and BREATHE! You should see the teddy bear move with your inhale as you breathe deep into your belly–see who can make the teddy bear go the highest. This can help you to return to your breath and welcome a sense of calm into your body. If this isn’t a great option for you, pausing to notice the exhale portion of your breath, intentionally making it a bit longer than the inhale, can be impactful in helping to calm the nervous system,” explains Stacey. “Clinically everything may be checking out okay with lab work, scans, and scopes, but it’s important to recognize if you’re dealing with pain, not everything is right. It can feel disorienting to not have that pain validated by labs and tests, which is why cultivating tools like these can be helpful to ride the waves of the pain while feeling just a little bit better in your body.”
When I decided to have soup last week after not eating all day, I was really taken aback by my abnormally loud bowel sounds while I was digesting. Stacey reminded me that when you go a long time without eating and then choose to eat something, that your gut will be working extra hard. This can lead to loud bowel sounds or Borborygmi. Anyone, including people with IBD, can experience hyperactive bowel sounds. When I heard my abnormally loud bowel noises the other day, it brought me back to past bowel obstructions where I would eat and people could hear my stomach making sounds in the other room.
What’s the deal with bloating?
Bloating in Crohn’s disease or ulcerative colitis is often caused by a combination of factors related to the underlying inflammation and the altered digestive processes associated with the disease. Some key factors include:
Inflammation of the Gut: The intestinal lining disrupts normal digestion and absorption of food. When the gut is inflamed, depending on location and severity, it can lead to malabsorption, causing undigested food particles to remain in the intestines longer, which can increase gas production and bloating.
Altered Gut Motility: Inflammation can impair the muscles in the intestinal walls that are responsible for moving food through the digestive tract. Slowed or irregular gut motility leads to delayed digestion and fermentation of food by gut bacteria, which can result in gas buildup and bloating.
Imbalance of Gut Bacteria (Dysbiosis): People with IBD often have an imbalance in their gut microbiome (dysbiosis), meaning there are fewer beneficial bacteria and more harmful bacteria. This imbalance can lead to increased fermentation of carbohydrates in the colon, producing excess gas, which contributes to bloating. Not getting enough nutrition can make dysbiosis worse.
Intestinal Gas Accumulation and Stool Burden: Inflammation in IBD can slow down the passage of gas through the intestines. This causes gas to accumulate in the gut, leading to bloating and discomfort.
Small Intestinal Bacterial Overgrowth (SIBO): SIBO, a condition where excessive bacteria grow in the small intestine, is more common in IBD patients who are not in clinical remission. This bacterial overgrowth can cause excessive fermentation of food, leading to bloating, gas, and diarrhea.
Dietary Factors: Certain foods, such as those high types of carbohydrates called Fermentable Oligo-Di-Monosaccharides and Polyols (FODMAPs), can sometimes be uncomfortable to digest and may temporarily need to be eliminated from the diet to help with bloating. Most often, this occurs in active Irritable Bowel Syndrome (IBS) flares.
If IBD is in clinical remission but you’re experiencing IBS-symptom overlap, you may benefit from identifying FODMAP triggers with a dietitian. Re-introduction is an important phase of FODMAP-trigger identification, because these foods are often rich in pre-biotics, which are beneficial for the gut microbiome.
Note: A low-FODMAP diet will not impact IBD-related inflammation. However, it may help with alleviation of symptoms. This diet is meant to be short-term and with the support of a registered dietitian.
Other dietary factors: sugar alcohols, chewing gum, carbonated beverages, sugar-sweetened beverages may also contribute to gas and bloating.
Food Intolerances: Food intolerances in IBD have not been studied adequately, but the most common food intolerance in IBD is lactose, where there’s a lack of enzyme available to help break down the lactose sugar, resulting in gas production and bloating. IBD patients can develop intolerances to certain foods, such as lactose, gluten, or high-fiber foods, which can trigger bloating. The gut’s reduced capacity to break down these components can result in gas production and bloating.
Abdomino-phrenic dyssynergia (APD): this occurs when the diaphragm and abdominal muscles do not coordinate appropriately, which can lead to bloating, distention, constipation, and pain. Bloating may worsen throughout the day, even without food. Pelvic floor physical therapists (PFPT) can help evaluate and treat a person with APD.
Medications: Some medications used to manage IBD may contribute to bloating by altering the gut microbiome or affecting digestive motility.
Bloating can also be a result of constipation, but this certainly doesn’t feel like it makes sense when we’re going to the bathroom multiple times a day.
“This [urgency] can happen as a result of overflow diarrhea, when stool actually moves around more solid stool within our intestines, agitating the nerves and muscles, until there is a complete evacuation of all stool,” Stacey explains. (source)
Addressing symptom alleviation related to bloating typically requires a combination of anti-inflammatory treatments, dietary modifications (including hydration), gentle movement, behavioral modification techniques, and, in some cases, probiotics and/or antibiotics to rebalance the gut microbiome. I’ve found not wearing a tight waistband or anything that buttons at the waist can help reduce bloating. Whenever I wear Spanx, I usually end up feeling bloated.
A day in the life
I asked Stacey to walk us through a practice menu for making dietary choices to stay nourished when your IBD symptoms are getting in the way:
Practice menu Note: this is not prescriptive; these are just some ideas. The key takeaway is to aim for consistent nourishment throughout the day in active disease flares, choosing nutrient-rich foods that will support you through a hard day. Work with a dietitian for personalization! No 2 diets necessarily look the same; no 2 days look the same.
Breakfast
Low-fat Greek yogurt that’s low in lactose, which is usually gentle on the gut and rich in protein, probiotics and bone health minerals. Add in some mashed raspberries and bananas with a nut or seed butter
Oatmeal—keep it simple, instant is fine. You can add a drizzle of olive oil to make it savory with additional omega-9 fatty acids for powerful anti-inflammatory support, soft boiled eggs, avocado, with a dash of thyme.
If you simply can’t get over the idea of a savory oatmeal, just add some nut or seed butter and swirl it altogether with banana or applesauce and cinnamon
Smoothie: a liquid base, some frozen fruits (1 Cup or less at a time), and handful of greens, and a 3rd party-tested protein supplement may be a comfortable way to start the day, sipping slowly and gently
Lunch
cooked down starches, like squash, zucchini, cooked-down until fork-tender
you can recycle these starches by adding them into a sandwich on sourdough, using tahini as a savory spread that will provide you with even more nutrition
Salmon is easy to digest while providing a rich source of omega 3’s
a nice pesto sauce to drizzle over the salmon would be delicious and rich in calories, perfect when you need additional nutrition and are feeling low on energy
Or, for something much simpler:
never, ever underestimate the power of a pb + j
a side of salty, simple-ingredient potato chips can replace any lost by diarrhea if you’re having an especially symptomatic day that causes you to make more bathroom trips
Dinner
Rotisserie chicken (you can buy this directly from the grocer- no cooking required!)
you can recycle leftovers into chicken salad to be used as a protein-rich spread for lunches or snacks
Roasted potatoes, or potato soup (made in a slow-cooker for easy prep and clean-up!)
Cooked green beans or carrots. (If lacking energy, throw some veggies in the slow cooker with broth for extra nutrition)
Snack ideas:
peeled, salty edamame
Hummus, cucumber and pita for dipping (can opt to peel cucumber if that feels better for you)
Hummus, tahini, or guac on a tortilla, roll up some rotisserie chicken
Avocado toast (cheers, Millennials!)
Maybe pour yourself a cup of peppermint tea (unless you also deal with acid reflux)- this could give you some bloat relief, too!
Many IBD patients identify certain foods that trigger symptoms like bloating, cramping, or diarrhea. For example:
High-fiber foods: If too many are added at once, this can exacerbate bloating or diarrhea, leading many patients to avoid whole grains, raw vegetables, and legumes.
Dairy products: Due to lactose intolerance, some individuals avoid milk and all dairy foods.
Fried and fatty foods: These foods may slow digestion, causing discomfort or worsening symptoms.
The tendency to avoid certain food groups can result in nutrient deficiencies, especially if entire categories like fiber, fats, carbs, or dairy are removed from the diet. The unpredictability of IBD flare-ups can make patients apprehensive about eating. They may opt for bland or easily digestible foods, limiting their variety and nutritional intake. While this might offer temporary relief, it may not provide all the necessary nutrients, leading to long-term health complications such as malnutrition, weight loss, or vitamin deficiencies (e.g., vitamin D, B12, iron), or a poor food-related quality of life.
Tips for Managing Pain and Bloating While Ensuring Proper Nutrition
Work with a Dietitian: IBD patients should work with a registered dietitian, preferably one who specializes in gastrointestinal disorders. A personalized diet plan and support can help patients identify trigger foods, balance nutrient intake, and minimize symptom flare-ups.
Small, Frequent Meals: Eating smaller, more frequent meals can help reduce bloating and cramping. By spreading out food intake throughout the day, the digestive system may be less overwhelmed, potentially alleviating pain and bloating while allowing for better nutrient absorption. Reach for simple ingredients.
Eat mindfully in a relaxed environment: chew thoroughly, allowing more time for enzymes in the mouth to aid in digestion, so food is more comfortable to digest as it travels down the GI tract. Mindful eating is also associated with
Cooked and Pureed Vegetables: For patients struggling with fiber tolerance, switching from raw to cooked or pureed vegetables can provide some of the essential nutrients from vegetables without causing additional bloating or pain. Cooking helps break down the fiber, making it easier to digest. When in doubt, aim for “fork-tender” fruits and vegetables if you’re in a flare, rather than keeping them out of your diet altogether if you can.
Incorporate Nutrient-Dense Foods: Nutrient-dense, easily digestible foods like bananas, white rice, eggs, and lean meats (like chicken and turkey) can provide essential vitamins, minerals, and protein without aggravating symptoms. Incorporating bone broths, smoothies, and pureed soups can also help patients maintain a balanced diet while being gentle on the GI tract.
Stay Hydrated: Hydration is crucial, especially for IBD patients who experience diarrhea. Drinking water, broth, and electrolyte-rich fluids can help maintain fluid balance, prevent dehydration, and support digestion. Add salt to your food for hydration. If you’re struggling to maintain hydration, you may benefit from an oral rehydration solution (ORS).
Pain Management Techniques: Alongside diet adjustments, pain management techniques such as relaxation exercises, yoga, or gentle physical activity may help ease abdominal pain and bloating. Walking will help with bloating and gas. Don’t overdo it, even a walk to the mailbox after eating is beneficial. Additionally, medications like antispasmodics or anti-inflammatory drugs, as prescribed by a healthcare provider, can reduce inflammation and pain, allowing patients to eat more comfortably.
Final thoughts
IBD patients face daily challenges in managing symptoms like pain and bloating while trying to maintain adequate nutrition. During a Crohn’s flare, it’s essential to focus on easy-to-digest foods while maintaining hydration and nutrient intake. Consider how to alter the texture of colorful, nutritious fruits and vegetables for comfort, rather than taking them away altogether- your body needs the nutrition for healing! Working closely with healthcare professionals, including a dietitian and gastroenterologist, ensures that patients can minimize symptoms while meeting their nutritional needs, leading to better long-term health outcomes. The goal during a flare is to reduce irritation, manage symptoms like diarrhea, pain, and bloating, and to keep eating while welcoming more anti-inflammation through nutrition!
Ever have a feeling in your gut that says you can trust someone or to make a certain decision? Get diarrhea or constipation when you’re under a lot of stress or anxiety? Your gut is so sensitive and smart scientists call it your “second brain! The human body is a complex ecosystem, with various systems interconnecting in intricate ways. One of the most fascinating of these connections is between the gut and the brain, often referred to as the “gut-brain axis.” This communication network plays a crucial role in maintaining our overall health, influencing everything from mood and cognition to immune function and digestive health. Emerging research indicates that the gut-brain axis may significantly influence the development and progression of IBD. The big question being—how?
This week on Lights, Camera, Crohn’s a look into how the Gut-Brain Axis works and what this means for the future of IBD treatment and care. Whether it’s stress, people pleasing, avoiding emotions, or anxiety—there are many triggers aside from food.
The Gut-Brain Axis: A Two-Way Street
Before we get started, it’s helpful to understand what the gut-brain axis involves and the multiple pathways it impacts, including the nervous system, the endocrine system, and the immune system. The primary components of this axis are:
The Enteric Nervous System (ENS): Think of this as how it feels when you get “butterflies in your stomach”. The ENS is a vast network of neurons (nerve cells that send messages all over your body to allow you to do everything from breathing to talking, eating, walking, and thinking) embedded in the walls of the gastrointestinal tract. It operates independently of the central nervous system but communicates with it via the vagus nerve, which runs from the brainstem to the abdomen.
Neurotransmitters and Hormones: The gut produces and responds to various neurotransmitters and hormones, including serotonin, dopamine, and cortisol. These chemicals are crucial for regulating mood, stress responses, and digestive functions.
The Microbiome: Trillions of microorganisms reside in the gut, forming a complex and dynamic community known as the microbiome. These microbes play a critical role in digestion, immune modulation, and even the production of neurotransmitters.
The Gut-Brain Connection and IBD
Chronic inflammation in IBD can affect the enteric nervous system, leading to alterations in gut motility and sensitivity. Those of us with IBD often experience abdominal pain, cramping, and changes in bowel habits, which are partly mediated by the nervous system. Conversely, stress and psychological factors can exacerbate IBD symptoms. Stress activates the hypothalamic-pituitary-adrenal (HPA) axis, leading to the release of cortisol and other stress hormones, which can, in turn, promote inflammation in the gut.
The Role of the Microbiome
The gut microbiome is crucial in maintaining intestinal health and regulating immune responses. For those with IBD, the composition and diversity of our gut microbiomes are often disrupted, a condition known as dysbiosis. Dysbiosis can contribute to the chronic inflammation seen in IBD by impairing the gut barrier function and promoting an overactive immune response. Interestingly, the microbiome also communicates with the brain through the production of metabolites and neurotransmitters, which influences mood and cognitive function.
You can optimize your gut microbiome with diet by eating:
Low sugar fruits (avocado, bell peppers, cucumber, tomato, zucchini, limes, and lemons)
*Before altering your diet or incorporating foods that could trigger disease activity, please talk with your care team and discuss this further with a registered dietitian who specializes in IBD.
Psychological Factors and IBD
IBD is often associated with psychological conditions such as anxiety and depression. According to the Crohn’s and Colitis Foundation, we’re two to three times more likely to deal with anxiety and depression than the general population. These mental health issues can both contribute to and result from the physical symptoms of IBD. For instance, chronic pain and discomfort can lead to increased stress and anxiety, while anxiety and depression can exacerbate gut inflammation and symptom severity. It’s a vicious cycle that can often feel out of our control.
Therapeutic Implications
Understanding the gut-brain connection opens new avenues for the way we treat IBD. Traditional treatments focus on reducing inflammation and managing symptoms through medications and lifestyle changes. However, addressing the gut-brain axis could provide additional therapeutic benefits. Some potential approaches include:
Probiotics and Prebiotics: These can help restore a healthy balance in the gut microbiome, potentially reducing inflammation and improving gut health. Talk with GI about their thoughts on this, as each provider has their own opinion.
Psychological Interventions: Cognitive-behavioral therapy (CBT), mindfulness-based stress reduction (MBSR), and other stress-management techniques can help manage the psychological aspects of IBD, potentially reducing symptom severity. Tools such as breath work and gut-directed hypnotherapy can help to improve GI systems, while improving your mood and decreasing stress. This works by softening the body’s stress response, inhibiting the secretion of cortisol, decreasing inflammation, and supporting the immune system.
Dietary Modifications: Certain diets, such as the low-FODMAP diet, can help manage symptoms by reducing gut irritation and inflammation. Personalized nutrition plans based on an individual’s microbiome composition are also being explored. Connecting with a registered IBD dietitian can provide you with a personalized plan geared to where you’re at on your patient journey—this will differ if you’re recovering from surgery, pregnant, flaring, the list goes on. Diet is not a one size fits approach, it’s unique to you. Before you start eliminating entire food groups and putting difficult limitations on yourself, talk with a professional.
Pharmacological Treatments: Medications that target the gut-brain axis, such as those that modulate neurotransmitter levels, are being investigated for their potential to treat both the psychological and physiological aspects of IBD.
Final thoughts
Our gut and brain are in constant contact through nerves and chemical signals, and taking care of our mental health and our gut health goes hand in hand. The relationship between our gut and brain is a fascinating and complex one that significantly influences our overall health, playing a pivotal role in everything from mood and cognition to immune response and digestive health. For those of us living with IBD, understanding and addressing this connection can provide new insights into the management and treatment of our disease.
As research continues to uncover the complexities of the gut-brain axis, we move closer to a holistic approach to IBD care that considers the intricate interplay between mind and body. Know that there are psychologists who specialize in gastrointestinal illnesses as well as dietitians who do as well. By adding specialists like this to your care team, you’ll be better equipped to manage the unpredictability of life with Crohn’s and ulcerative colitis.
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