Traveling with inflammatory bowel disease (IBD) is rarely as simple as packing a suitcase and showing up. It’s logistics, emotions, planning, and flexibility. It takes a bit of hypervigilance. This layered on top of a disease that doesn’t take vacation days. But it is possible. And for many of us, it becomes one of the most empowering reminders that life with IBD can still be adventurous, and rich with new experiences.
This week on Lights, Camera, Crohn’s you’ll hear from two incredible IBD advocates, Kelly Dwyer and Rachel Verbanac. They both open up about their diagnoses, their anxieties, their coping strategies, and their go-to travel essentials. Their honesty and wisdom offer a roadmap for anyone who wants to explore the world without letting IBD call all the shots.
Meet Kelly: 21 Years of Symptoms, 7 Years Diagnosed
Kelly may have been diagnosed with Crohn’s disease in 2018, but she’d been living with severe perianal fistulizing ileal Crohn’s since the early 2000s.
“Before diagnosis, I avoided significant travel whenever possible because I was so ill. And when I did travel, I tried so hard to plan for every single scenario that it became stressful for me and everyone around me.”
Now in deep remission thanks to medication, Kelly still plans intentionally, but the difference is that the planning empowers her instead of holding her back.
She structures trips around:
Her injection schedule
The time of day she flies or drives
What foods she eats before travel
How to pace her energy
And what she needs to stay healthy while surrounded by crowds
“I wear a mask, use sanitizer constantly, wash my hands as much as I can… it all helps me feel like I’m doing what I can to set myself up for success.”
Kelly on Travel Anxiety: The Trauma Stays with You
Despite years of remission, Kelly still carries fear rooted in lived experience.
“I constantly worry about not making it to a bathroom. Even though it has not happened in years, that trauma stays with you.”
Kelly also experiences nausea, anxiety and a whole lot of gas and burbling guts when she travels.
“Finding the right medication cocktail that keeps things calm and in order in my guts (and brain!) took a lot of trial and error, but was worth it for me to find a combination to give me confidence that I’ll feel like I’ve done everything I can to get the trip off on the right foot. I would recommend you ask your doctor or GI about Zofran, anti-anxiety medications in small doses, Gas-x, antacids, and other OTC medications that might help you to make sure they’re safe for you to take.”
She’s built a system that helps her feel confident when she’s traveling:
Depends or heavy-duty panty liners on days she’s unsure
Change of clothes and wipes in her purse, not her carry-on
Imodium and emergency meds ready to go
Small meals before and during travel days
Medication for nausea, anxiety, gas, and gut discomfort
“I had to learn to relax into the chaos of travel and not panic when plans change. Travel is unpredictable—but so is Crohn’s.”
The Power of Protection: Insurance (Both Emotional and Literal)
Kelly is adamant that travel insurance is non-negotiable.
“I have used travel insurance many times for flare-related cancellations. It can be heartbreaking to miss something important, but it’s not your fault. This is your reality, and you’re doing your best.”
She also communicates openly with travel companions, so expectations are clear and compassionate from the start.
“Find as much peace as possible. Asking for everyone’s understanding and compassion, is so important. I remind myself that it’s not my fault that I am unwell. It’s not anything I did to cause the flare. This is simply my reality, and I am trying my very best, even if it doesn’t always work out the way I’d hoped.”
“Treat yourself with compassion, always. Build in extra time everywhere. Your comfort is worth it. Having a few extra hours at the airport to sit and read a magazine is much preferable to rushing through security lines and not being able to use the bathroom before getting on the plane because you’re late.”
Meet Rachel: A Travel-Lover Who Refused to Stop Exploring
Rachel was diagnosed with Crohn’s disease in 2021, right as she was going back to nursing school. Before that, she spent months living a nomadic lifestyle in New Zealand and expected to spend her twenties exploring the world. Her diagnosis meant rethinking what travel could look like. Requiring infusions changed everything.
“Hiking the Appalachian Trail used to be a dream, but with the need for insurance, pharmacy authorizations, infusion clinics, and access to university health systems… that lifestyle just wasn’t realistic anymore.”
But Rachel didn’t stop traveling. She adapted.
How Rachel Travels Now
Rachel describes herself as someone who “packs her anxieties,” but in a productive way.
Her prep includes:
Bringing a med kit stocked with small doses of essential meds
Monitoring hydration closely on travel days
Planning meals and bowel habits ahead of time
Understanding bathroom access in each country
Carrying small local currency bills for paid restrooms
Bringing a letter from her provider outlining her diagnosis and meds
“After many international trips, I’ve proven to myself that how I feel at home reflects how I feel on the road.”
Rachel also buys comprehensive travel insurance that covers pre-existing conditions, often from TinLeg, and encourages others to read the fine print carefully, especially regarding upfront payment rules.
“I feel much more secure knowing all medical bills will be paid for should I need anything abroad. Beyond health insurance, I have used the insurance for trip interruption and costs of delays. I also have my provider write me a letter stating my disease, common side effects, and my current medications. This letter can be useful when seeking care at a new clinic or if TSA should ever give you a difficult time (I have never experienced this). I like having the physical letter in the med kit.”
Bathroom Access: A Cultural Learning Curve
When traveling with others, Rachel gives them a heads up that access to bathrooms is a priority for her. Especially when traveling in Europe.
“Europe often requires a purchase to use a restroom. You cannot just run into a McDonald’s.”
Her strategy?
Plan ahead
Carry cash: Having a few small bills in the local currency is helpful to make a quick sale or pay at public bathroom stations in some countries.
And she always tried to keep everything in perspective, even when the unexpected happens.
“Accidents are embarrassing, but you will most likely never see these people again. It is okay. You are okay.”
Travel Anxiety: You’re Not Alone
Rachel acknowledges the fears that come with IBD, but her message is clear:
Do not let IBD keep you from seeing the world. Start small and your confidence will grow.
She now travels to Mexico annually and cannot imagine winters without it.
Nurse-Approved Safety Tips from Rachel
Some of her favorite reminders:
Even healthy travelers get GI bugs—be cautious with food and water. Taking general precautions like only drinking bottled water in areas where the water might not be safe to drink, sanitizing your hands often, and avoiding touching your eyes and mouth are still the best ways to prevent infections.
Avoid buffet sushi
Choose made-to-order stations
Read resort and food reviews. She checks out Google reviews, TripAdvisor, and Hotels.com to see what people have to say before she books a trip.
Wear an N95 on flights to avoid illness and see if your travel companions will do the same to help keep germs at bay.
Advocate for yourself with travel companions
Read Google reviews quickly if you’re unsure of a restaurant, locals and travelers will share if they got sick eating there. Look for highly frequented places.
As a nurse, Rachel has these words of wisdom for our community, “Don’t let IBD keep you from seeing places and experiencing new cultures. Often as patients we have anxiety and unknown destinations can seem overwhelming and scary. Start small and your confidence will grow, promise.”
Rachel’s Travel Med Kit
She carries:
Doctor’s letter
Hand sanitizer
Tylenol
Imodium
Pepto
Tums
Fiber
Gas-X
Benadryl
Dramamine (also helpful for intense nausea)
Zofran
Liquid I.V.
Band-Aids that are a few sizes
Contact solution or small vial of artificial tears (I wear contact lenses)
A few doses of Dayquil and Zyrtec—when changing the container medication comes in, be sure to write the dose (mg or ml or the number of pills) and how often you take it.
A tube of triple antibiotic ointment and hydrocortisone ointment (for scrapes and bug bites)
Final Thoughts: You Deserve to Experience the World
Traveling with IBD takes more planning, more flexibility, and more courage than most people will ever understand. But as Kelly and Rachel show, it’s possible and it can even become empowering.
As someone who was diagnosed with Crohn’s more than 20 years ago traveling can still make me feel a bit uneasy. I always keep pain medication, Zofran, and Dramamine in my carry on. If you have to pack your biologic medication, keep that on you as well. It’s important to check how long your injection can be out of the fridge. Nowadays, Humira for example, can be unrefrigerated for up to 14 days. If you have to do your injection while away from home, make sure to have alcohol swabs and an ice pack (if you are used to using one).
I never drink caffeine prior to flights or long road trips, and I eat very light until I am at my destination. I try to dress as comfortably as possible, and do not restrict my belly in any way. The moment I get to my hotel room I take off my travel clothes and shower. If you are traveling and feeling symptomatic, it can be helpful to alert your care team at home and also do research beforehand about local hospitals so you have a game plan in place should you be facing an acute flare that may require a trip to the emergency room.
Whether you are taking a weekend road trip or boarding a long-haul flight, remember:
You’re allowed to take up space. You’re allowed to prioritize your needs. You’re allowed to choose comfort over speed. You’re allowed to protect your energy.
And most importantly:
You deserve to make memories that reach far beyond the walls of your disease.
Community and chronic illness can be thought of as a beautiful tapestry. Our lives and experiences, while unique, become intertwined, and once we recognize we don’t have to embark on the isolating journey alone, we are forever changed. We are so much stronger together. Johnson & Johnson’s published White Paper developed through IBD Social Circle entitled, “The Power of Community in Inflammatory Bowel Disease: Coming Together to Reduce physical and psychosocial impacts” highlights key touchpoints of the patient and caregiver experience and shows the ripple effect of Inflammatory Bowel Disease and how complexity and intricacies of Crohn’s and ulcerative colitis reach far beyond the gut. IBD impacts our careers, our relationships, our identities, our mental and emotional health, and it often dictates how our life stories unfold.
This week on Lights, Camera, Crohn’s, I’ll walk you through the valuable insights from the white paper and show what the research uncovered when it comes to stigma, mental health, online communities, and more. You’ll hear heartfelt reactions from IBD patients and caregivers about the findings and hear what two leading gastroenterologists have to say about the research.
Leaning on the lifeline of community
Jessie Magaro was diagnosed with IBD when she was 15 years old. Her reaction to the white paper speaks volumes.
“I was almost in tears reading this research. When I was first diagnosed as a child, there was no readily accessible community to lean on. It was isolating, depressing, and incredibly lonely. But when my disease returned in adulthood after years of remission, I realized the world had changed,” she recalls. “Suddenly, there was visibility. People sharing their stories openly online, entire communities forming on social media. For the first time, I could connect with others who were like-minded and like-bodied, people who understood my fears, my choices, and my fight.”
That connection wasn’t just comforting; it was lifesaving. It became essential to Jessie’s mental health and gave her the strength to make the hard, necessary decisions about her body and her health that helped her survive.
The white paper digs deep into how and why patients and caregivers crave additional information and resources within the IBD community. According to the survey, “Nearly all people with IBD (95%) are looking for IBD information and resources beyond what their physician provides or discusses with them.” The survey found:
42% of people with IBD have participated in online IBD support groups
37% have engaged with social media forums or group chats on platforms like Facebook and Reddit
28% have followed influencers who share their IBD journey on social media platforms.
Dr. Jami A. Kinnucan, MD, is an IBD specialist at the Mayo Clinic Florida. She says, “This research is profoundly impactful for the IBD community, as it highlights many of the challenges that patients experience but often do not share with friends, family, or even their healthcare team. It opens the door for important conversations within the IBD community and reinforces the need for clinicians to explore the broader effects of disease beyond physical symptoms.”
The pediatric caregiver perspective
Cindy Hancock’s daughter was diagnosed with Crohn’s at age eight, she tells me if there can be a “best” part of being an IBD caregiver, it is “absolutely the online community she’s been so grateful to find and learn from.”
As a result of how heavily her and her daughter have leaned on and benefited from the support of others who “get” the reality of life with IBD, Cindy was not surprised by the findings of this white paper that highlight the power of community.
“The courage to seek out a second opinion, and bring info shared by the second-opinion gastroenterologist to our established gastroenterologist? CHECK. Information about how to interpret iron blood work that helped me advocate for transformational care for my daughter, CHECK. Learning what intestinal ultrasound is, and why it presents an amazing opportunity for IBD care and joining forces with other patients to informally advocate for its increased usage in the U.S., CHECK. Anecdotes about drug interactions via lived experiences of other people with IBD, CHECK. Recommendations about favorite heating pads, CHECK. Learning from another Crohnie that gummy bears who aren’t red or purple are part of a colonoscopy prep diet, CHECK!! I could go on and on all day!” says Cindy.
She feels fortunate that her daughter has a good team of physicians, and they always seek their opinions first of course. But Cindy feels the tidbits they’ve gleaned from the IBD community online are what have transformed her daughter’s quality of life with Crohn’s. “The impact is incalculable.”
Cindy credits patient advocates for helping guide healthcare decisions, saying “the IBD community is akin to a warm blanket. We very rarely interact with people in the “real” world who live with IBD, but every day we get to interact virtually with people just like us who understand this life… and that sense of community is priceless.”
Bridget Brown’s daughter was diagnosed with Crohn’s two years ago when she was eight. She says, “Humans are built for connection—but when you’re handed a diagnosis that isn’t widely understood, it can feel incredibly isolating. Most families reach an IBD diagnosis after some really dark, confusing months and years. The IBD community brings the light back in.”
She says as a parent, hearing other people’s stories and experiences is everything.
“I don’t know what it feels like to live inside my daughter’s body, but the insight gathered from the online IBD community helps me support her better. There’s real strength in shared stories, and there is nothing more valuable than being heard from someone who truly gets it.”
Dr. Hilary Michel, MD is a pediatric gastroenterologist at Nationwide Children’s Hospital in Ohio. She says in reading this white paper she could not help but think about how the concepts also apply to children and adolescents with IBD.
“In addition to physical symptoms, youth with IBD are also at increased risk for anxiety and depression and school absenteeism. In a period of life characterized by marked changes in development, independence, and relationships, the diagnosis of a chronic disease like IBD can be incredibly impactful,” says Dr. Michel. “Access to the IBD community for education and support is likely to be equally as important to young people with IBD and already exists in formats including in person and online groups, advocacy efforts, and camps, such as Camp Oasis. Just knowing they are not alone with IBD is so powerful. Additional attention should be paid to privacy and safety concerns when developing interventions for young people.”
Dr. Michel also feels support for parents and caregivers of youth with IBD is essential.
“Parents are at risk for missed work themselves and experience immense guilt and stress related to caring for their child. Connecting with other parents who have “been there,” sharing tips and tricks to navigate their journey, or simply having a listening ear can go so far in allowing parents to feel supported.”
The Power of the IBD Social Circle: A Veteran’s Perspective
Suzy Burnett is an IBD mom of three and blogger at Crohnie Mommy was diagnosed with Crohn’s in 2008. She says when the white paper was published, she read, and re-read, the IBD Social Circle’s latest report.
“The first reading left me stunned by the raw reality encapsulated in the statistics. The second reading became a series of nods: “Yes, that’s me,” I found myself thinking with every single finding. I found the white paper to be fascinating, maddening, raw, and often heartbreaking. Mostly, because I have personally walked down, or known someone in the IBD community who has walked down, every single path described. Simply put, this report is SPOT ON.”
Suzy says her own patient experience deeply resonated with the segment that focused on the critical role our community plays in every aspect of life with IBD: from the shock of diagnosis and the struggle with relationships to the relentless search for answers and navigating new medications.
The Birth of a Community
“When I was first diagnosed, Crohn’s disease was relatively unknown. The internet was not the wealth of knowledge it is today,” explains Suzy. “I was handed a packet of paper, told there was no cure, and left to grapple with denial, depression, and severe flares for years.”
As Suzy grappled with her disease and the years ticked on by, she felt as though the IBD community was born.
“Or we all simply started emerging from the woodwork, bloggers, patient advocates, and a growing number of patients sharing their stories. It felt as if we made an invisible pact: to stick together, stay strong, and fight for each other. It felt like a window of hope opened: I found others. Others like me.””
Suzy says the research done in this report should be shared with every newly diagnosed patient and every “old veteran”.
“We are IBD warriors, and this white paper embodies that truth to the core. It is an invaluable resource for all who suffer from IBD, as well as for the caregivers and family members who stand by their side.”
Recognizing the importance of treating the whole self
Katie Connelly has lived with Crohn’s disease for more than 20 years. She says hearing that patients are afraid to share their emotional burdens with their HCPs is defeating and eye-opening.
“As someone who is lucky enough to have one of those GI specialists who sees me as a whole person, it is imperative that I let her know how I am feeling about my quality of life. It helps her gauge where I am both physically and emotionally with the treatments I am on,” she shares. “With the mind/gut connection being such a real thing, it needs to be instilled in every HCP’s practice to inquire on how their patients feel in life. The responsibility cannot always fall to the patient to disclose everything.”
As a woman living with perianal fistulizing Crohn’s disease, Katie knows firsthand how isolating and complicated the patient journey can be. She credits the patient community for helping her cope and get educated about the questions she has had about intimacy and sexual dysfunction.
“I have had fistula for six years now and have both dated and ended up married while living with them. It has been far from easy, and there is a lack of understanding and communication around it. I hope to start bringing up my own sexual experiences and helpful tips through my own community, Badass with a Bad Ass in hopes to help lower those numbers. I just want us all to feel less isolated in this.”
Being wary of misinformation shared online and in person
Kelly Dwyer says she’s benefited from both in person and online IBD communities over the many, many years of living with her disease. While she’s grateful for community support, she believes misinformation is one of the greatest threats to IBD patients.
“When I attended my first support group after I was diagnosed, I found a community of people who were anti-biologic and unsupportive of many questions I had about treatments and medical care for IBDers. I was so dismayed to see that they were the only in-person support community in one of the US’s largest metropolitan areas, and promoting non-science backed theories of IBD care,” recalls Kelly. “Commitment to strict content moderation and upholding science-backed information is one of the reasons that support communities affiliated with national IBD organizations are an essential part of IBD care and connection.”
While she agrees the online community is beneficial, she also wants patients and caregivers to always have their guard up and be aware of the misinformation and opportunists who go after vulnerable IBDers by attempting to spread fake cures and push “snake-oil” treatment to a make a quick buck.
“As with many chronic illness communities, the newly diagnosed are uniquely susceptible to bad actors because of the desperation and grief that comes with being diagnosed with this incurable, devastating disease,” says Kelly.
While she believes many patient advocates seek to promote accurate and data-driven information, such as advocates like Tina Aswani-Omprakash and Brooke Abbott Abron who are cited in this study, Kelly wants to warn others that just as many others are publicly sharing their support for dangerous treatments, unregulated supplements, and potentially harmful lifestyle and diet choices.
“National organizations, physicians, patient advocates, and support communities like IBD Social Circle are doing their best to create easily accessible, data-driven, and science-backed resources for education for IBDers at all levels of managing their disease, and from diverse cultural and racial backgrounds. Making sure these resources speak loudly and spread far online will be a vital step to combatting the harms of misinformation. We all need to do as much as we can to educate and inoculate fellow IBDers against the dangers of anti-science rhetoric,” advises Kelly.
The financial trade-off and workplace woes with IBD
Ian Goldstein has lived with Crohn’s since 16 years old. The white paper’s discussion on disclosing diagnosis in the workplace and requesting accommodations hit home for him.
“I was fearful of mentioning my disease on job interviews and at work because I did not know if my co-workers would view me differently, if they would think I was less equipped for my role or more expendable. For a long time, I had to get weekly iron infusions, and I don’t know if my employer didn’t like that I worked remotely because of this, says Ian.
The white paper highlights a 2024 survey from the Crohn’s & Colitis Foundation that found more than 40% of people with IBD have made significant financial trade-offs to afford their healthcare, including giving up vacations or major household purchases, increasing credit card debt, and cutting back on essential items such as food, clothing, and basic household items.
“YES! 1000% YES. If I ever take a vacation, it is a weekend trip upstate because I need to make sure I have money set aside to afford my one thousand dollar a month health insurance premium in addition to the deductible and copay costs. If healthcare didn’t cost so much, my life would look quite different,” says Ian.
Everything from career impact to diet resonated with Ian. The focus in the research on foods and beverages that are staples for most but may be on the list of foods people with IBD should avoid (such as fried or greasy foods, spicy foods, sugar-sweetened drinks, and whole-fat dairy). Ian believes it’s important that people understand that it is not just the “unhealthy” or “junk” foods that can exacerbate symptoms.
“For 10 years I avoided vegetables and nuts completely because they put me at risk of having a bowel obstruction. The same foods that would make me healthy could also send me to hospital,” explains Ian.
Falling back on community for overall well-being and treatment decisions
The white paper highlights that, through IBD community engagement and support, patients have reported positive impacts on:
Physical well-being and treatment decisions
39% reported that it has helped them identify ways to make improvements in their physical health and well-being
39% learned how to improve their ability to communicate with their HCPs
39% became more informed about IBD treatment options, including different treatment options they did not know about before
32% learned how to better advocate for themselves with their HCPs
Ian couldn’t agree more, “Community has been a game changer for me. Because of two friends I met from social media, I learned about an amazing surgeon in New York who did an outstanding job with me in 2025, and I haven’t felt this good in years.”
He puts on comedy shows in New York centered around healthcare and because of one show called, “The Autoimmune Saloon,” Ian crossed paths with an audience member who mentioned Intestinal Ultrasound. “No doctor had ever mentioned it to me, but this random audience member did. Because of her, I’m able to get this test, which is much less invasive and informative when it comes to my Crohn’s. This is how community makes an impact: we teach others what we know, things that doctors may never think to tell us.”
Facing the music and fighting the stigma across all races and cultures
According to the white paper, up to 84% of adults with IBD feel that there is perceived disease-related stigma against them, which results in social stereotypes making them seem unreliable or antisocial.
IBD has historically affected White populations at a higher prevalence than other groups; however, the research shows the incidence of IBD is increasing in all races and ethnicities across the US, including in people who are Black, Hispanic, Latino, and East or Southeast Asian. Research also suggests that Black, Asian, and Hispanic individuals with IBD may have a higher incidence of more severe disease.
Kimberly Hooks says, as a Black woman living with IBD, she knows exactly what it feels like to be dismissed, overlooked, and told that her symptoms didn’t fit the picture.
“I was diagnosed late, and even after that, there were delays in getting the medication I truly needed for my severe Ulcerative Colitis. That delay cost me my colon. My story isn’t unique; it reflects what so many Black and Brown patients experience when our pain is minimized or our symptoms aren’t taken seriously,” Kimberly shares. “That’s why this research matters so much. It confirms what we’ve been living. IBD does not discriminate, and our communities are being affected at rapidly increasing rates. This is why I advocate, because visibility saves lives, and every person deserves to be heard, believed, and treated with quality care.”
Kimberly went on to say how incredibly grateful she is for the IBD Social Circle creating a safe space for patient voices and grounding this work in real lived experiences.
“Partnering with advocates to highlight our real stories and pairing those stories with research exploring the physical and psychosocial factors impacting patient care is powerful. It shows the benefits of community and how connection can support people with IBD in every part of their disease management. This kind of work gives me hope. When patients and community come together, we don’t just raise awareness, we help shape a better, more equitable future for everyone living with IBD,” she says.
Acknowledging the struggles IBD can present in motherhood and beyond
As a patient leader and an IBD mom of two small kids, Michelle Pickens appreciates the white paper for a multitude of reasons, especially the notion that we can appear “fine” even while we’re struggling. She also valued the discussion around the wide range of symptoms patients face and how this variability can delay diagnosis and access to support.
“That “in-between” period—when someone is sick but unsure where they fit or where to turn—is incredibly challenging. You experience symptoms consistent with IBD, yet you don’t quite feel part of that community without a formal diagnosis,” Michelle explains.
The section of the white paper on remission really resonated with Michelle. There is often an expectation that once you begin treatment, you will immediately feel better, but that is not always the case. She says it’s important to acknowledge the need for community support when clinical measures indicate remission, but physical symptoms persist.
“I was glad to see the impact on the family unit addressed, especially in areas such as domestic responsibilities and parenting. These are areas where I personally struggle at times. In the workplace, accommodations can be requested to help manage IBD symptoms, but parenting offers no such structure,” Michelle shares. “As a mother, it can be difficult to find someone who can step in and keep things running the way you would, so the responsibilities often fall back on you, even when you’re unwell. This contributes to significant “mom guilt,” and while mom communities exist, the parenting experiences of those without chronic illness differ greatly from my own.”
Addressing mental health struggles
The white paper reveals that more than half (52%) of people with IBD consider the impact of IBD on their mental well-being as negative. Other research studies have shown that individuals also experience depression and anxiety—with as many as 40% and 30%, respectively, experiencing these comorbidities, even while in remission.
The body image issues that stem from IBD such as weight loss, hair loss, steroid-related weight gain, ostomy bags, fistula, and other extraintestinal manifestations make life feel like a minefield. We are constantly up against the unpredictable nature of living with a disease that can rear its ugly head at any given moment. We are constantly forced to pivot and make decisions that often have a direct impact on our overall body image. I remember when I was in college (prior to my Crohn’s diagnosis) that I loved being on camera, working in TV news. Fast forward to five months post-graduation and three months post-diagnosis, and I was mortified anytime anyone tried to take a picture of me. Looking in a mirror was a stark reminder of what I was now and what I used to be.
These photos were taken 3 months apart. Pre-diagnosis and while on 22 pills a day.
Please know that if you struggle with this, you are not alone. As the white paper notes, “as many as 75% of women and 50% of men experience body image issues because of their IBD.”
Final thoughts
This white paper is a gift to the IBD community. As someone who was diagnosed with Crohn’s in 2005, I would have given anything to have a resource like this at my fingertips to validate my struggles and recognize my fears. We are at a pivotal point in patient advocacy and leadership where we can help shape the future of what it means to live with IBD and thrive despite the dark days.
Dr. Matthew Ciorba, MD, a gastroenterologist at Wash U in St. Louis says, “This work offers patient-identified, doctor-approved insight. It brings together perspectives that clinicians alone often cannot fully grasp. The document fills a unique niche in the IBD space. It bridges the lived experience of patients with the expertise of leading clinician advocates. There is truly nothing else quite like it.”
Our community, everyone from patients to caregivers, and medical providers, is so unique. For many of us, these connections and friendships (whether online or in person) have helped us to reclaim a sense of purpose within our disease journeys. My hope is that medical providers and GI psychologists use this research to empower and educate the community by providing this incredible research to patients and caregivers.
Check out the Executive Summary of the White Paper
When you live with Inflammatory Bowel disease, there’s no telling if or when you’re going to need an NG tube (nasogastric tube) to help stabilize your symptoms, deliver nutrition, and help your body heal. In my 20-plus years living with Crohn’s disease, and despite many hospitalizations for bowel obstructions, I have never needed one (yet). Recently, a fellow IBD mama on Instagram shared about getting one as she’s hospitalized right now (with a new/additional diagnosis-Gastroparesis), and her experience inspired this article.
This week on Lights, Camera, Crohn’s, a guide that breaks down what to expect, what helps, and how we can best cope from fellow patients and caregivers who have lived through it. Whether you are facing your first tube placement or supporting someone who is, the fear of the unknown can often feel bigger than the procedure itself.
Understanding the Process (and Why It’s So Intense)
NG tube placement can feel overwhelming because it involves an extremely sensitive area: your nose, throat, and gag reflex. It is quick, but not exactly pleasant. Knowing what is coming can dramatically reduce anxiety.
An NG tube is typically used for:
Bowel rest and decompression during IBD flares
Relieving bowel obstructions
Nutrition support
Medication delivery
And while the experience varies widely, preparation and honest communication with your care team make a huge difference.
Before Placement: Preparing Your Mind and Body
Ask for numbing options: Most hospitals can use lidocaine spray or gel in your nostril to make the initial insertion more tolerable. It is worth requesting.
Practice slow breathing: Focusing on deep, steady inhales through your nose helps decrease the gag reflex and keeps your body relaxed.
Sit upright with your chin slightly tucked: This position straightens the path the tube travels and can make the process smoother.
Have emotional support: Whether it is a partner, parent, friend, or even someone on speakerphone, having a familiar voice can ease anxiety.
During Placement: Strategies That Actually Help
Swallow as the tube advances: If the nurse allows, sipping water and swallowing as the tube moves downward helps guide it into the esophagus rather than the airway.
Anchor your eyes on one spot: A visual point of focus reduces the instinct to pull back or panic.
Choose a mantra: Something like “This is temporary” or “Every swallow gets me closer” can center your mind.
Ask your nurse to narrate the steps: Knowing what is happening and when it will be over prevents surprises and makes the process feel more controlled.
What Patients and Caregivers Have to Say
Hindy: “I would say to request the thinnest tube possible. It is really awful.”
Ashley: “It’s a horrible experience. I’m glad I didn’t know what to expect before getting one placed, because I don’t think I would’ve been able to handle it. I don’t think there’s anything that could have prepared me for it.”
Amy has IBD and her four-month-old daughter does not, but she has had an NG tube for two months, due to issues with strength, stamina, and desire to eat after being born prematurely.
“She was diagnosed with Failure to Thrive, and her NG tube has been lifesaving! I can guarantee she gets the nutrients she needs to grow and thrive. She tolerates the NG tube very well. She has pulled it out multiple times, but thankfully we live close to the GI clinic and a great Children’s hospital.”
Amy has found there are certain strategies to limit the number of times she pulls the NG tube out, such as taping it closer to her nose. She says it can be stressful at times, but luckily with her medical background she knows how to clean the tube 8 times a day. Even though her daughter has handled the NG tube like a champ, Amy and her husband have decided to transition to a G-tube, since their baby girl will need nutritional support for a little bit longer, which Amy thinks will aide in comfort and speech development.
Alexis: “Get a little white board so that you can write what you want to say as talking is so uncomfortable.”
Karen: “Taking anti-anxiety + pain medication to help with the uncomfortable pain and anxiety that NG’s cause. I refuse NG tubes now without serious meds, the trauma, pain, and discomfort they cause must be treated and I think providers really underestimate how traumatizing it is to have one, especially if it’s put in while you’re awake.
Amanda: “Ask for some nebulized lidocaine before insertion.”
Abbie: “Ask for throat numbing spray!!! I was given it my first time and then every other time I’ve had to ask, but I’m so appreciative the first nurse I had gave me some so I knew to ask for it in the future.”
Sarah: “I didn’t even know what an NG tube was until it was already inserted. I suppose the shock of how quickly the insertion went shielded me from the pain and discomfort. Numbing spray was the only way I could cope with the tube irritating my throat. Mine was in for three days while I had a bowel obstruction and the day it came out felt like FREEDOM.”
Becca: “They are the f***ing worst. You can quote me.”
Melissa: “I had one they put in while I was awake and after SIX tries, I was adamant on getting something to relax me. They put a little something in my IV and then it went down without an issue. I also had a smaller one, more child-sized than adult.”
Dana: “I wish I had something positive to say about NG tubes, frankly I didn’t cope at all until they gave me Ativan and eventually a muscle relaxer. Sometimes they can give you a numbing throat spray to help with irritation. After the first few days, it gets little more tolerable as your body gets used to it.”
Jennifer: “OMG. 26 years with Crohn’s and nothing traumatizes me more than the mention of an NG tube. I was about 95 pounds the first time I got one. I’m almost 5 feet tall, and after two tries of me not being able to breathe they realized I needed a child-size tube.”
Mayara: “When I had my NG tube, I used to suck on ice chips/cubes to help ease my sore throat.”
Claire says she’s been through the wringer with NG tubes. There was a point where she had 10 in one year!
She says, “Regardless of how awful NG tubes are and the damage (long or short term) they can do, they have saved my life repeatedly. I am no stranger to bowel obstructions. Developing strictures seemed to be a favorite past time for my small intestines. The NG tube is supposed to decompress the obstruction and stop or at least reduce the amount of vomiting (also helps to prevent aspiration). I will never forget how nervous I was before my first NG placement and even now as an NG vet, I still get very nervous. I always ask the doctor for IV Ativan or IV Valium beforehand.
Claire also says even if a doctor does not want to give a benzo after an opiate that they will usually give her a dose right before placement.
“Don’t be afraid to ask for what you need. I also won’t sugarcoat it; you will most likely gag and vomit during the placement. Ask for an emesis bag or basin. It sounds counterintuitive, but if the nurse doing the placement is experienced, they will be able to utilize you gagging/vomiting to get the tube in faster. Nosebleeds are also very common.”
After NG Placement: Getting Comfortable
Secure the tube well: Do not be shy about asking for gentler tape, extra adhesive, or adjustments. A well-secured tube is less irritating and less likely to tug.
Soothe nasal irritation: Saline spray, warm compresses, or a tiny amount of water-based lubricant around the nostril can reduce soreness in the first day.
Experiment with sleeping positions: Many find sleeping slightly elevated or on their back with a supportive neck pillow helps keep the tube comfortable.
Be comfortable: Wear loose tops, zip-up hoodies, or scarves if you want to conceal the tube and prevent snagging on straps or bags. Obviously, many people are choose to stay in their hospital gown.
Protect it in the shower: A bit of cling wrap or a small waterproof dressing keeps the tape from falling off.
Move with intention: Sharp head turns or bending forward quickly can tug the tube and cause discomfort. Slow and steady helps.
Support for Caregivers: What Helps Most
As a caregiver, it can be easy to feel helpless on the sidelines as you watch your child or a loved one or friend go through this. Here is how you can help ease that burden:
Watch for tension or kinks: If the tube starts pulling, the patient may feel nausea or pressure.
Track symptoms: Be mindful of any changes you may notice with coughing, reflux, or fullness. This can mean the tube has shifted.
Learn how to flush the tube: If this is a long-term situation, educate yourself so you can help prevent blockage and avoid urgent care visits.
Offer emotional space, not pressure: Let your loved one set the tone. Everyone is different. Some want distraction, others want quiet, some want humor. Follow their lead. You know them best, trust that instinct and know that even if they may seem frustrated or short, that anger is not geared towards you, but rather the difficult circumstance and situation they are enduring.
The Emotional Side: What We Don’t Talk About Enough
Having an NG tube can stir up fear, embarrassment, frustration, sadness, or anger. All these feelings are normal.
Many patients say:
They feel “less like themselves.”
They are worried about how they look.
They are afraid to sleep.
They are overwhelmed by the sensation of the tube at first.
These feelings tend to ease within 24–48 hours as the body adjusts. Give yourself grace. This is a medical tool, not a reflection of strength, identity, or dignity. It is ok to feel all the feelings.
Celebrate the small wins
Take this one like you do with all things IBD. Give yourself credit where credit is due! It is not easy and it is important to celebrate all the wins, no matter how “small” they may seem. You are making strides and growing through this journey, whether you realize it or not. What you are experiencing matters and your resiliency deserves celebrating!
The first time you swallow without noticing the tube
Sleeping through the night
Getting out of bed more comfortably
Tolerating feeds or feeling abdominal relief
When to Call Your Care Team
You may wonder what is “normal” and what deserves pushing the nurses light or alerting your care team. You should reach out immediately if any of the following happen:
You have trouble breathing or persistent coughing
The tube appears to be slipping out
There’s significant nasal bleeding
You feel intense nausea or vomiting
The tube becomes clogged and flushing does not help
You should never hesitate to call. NG tubes are temporary but important, your team expects questions. Classic example of better safe than sorry. You are not a burden to anyone.
Final Thoughts
An NG tube can feel intimidating, and while extremely unpleasant, they can help give you some relief while allowing your doctor to keep finding answers for you. With preparation, the right coping strategies, and the support of a caregiver or medical team, you can make the experience more manageable. Always remember you are never alone in your fears and setbacks and that your ability to cope and your voice matters.
Whether you’ve experienced one colonoscopy or 20, you know the process is far from enjoyable. This past week while scrolling through Instagram I came across a story an IBD caregiver posted as her young daughter prepped for her scope. During the video she explained how her husband rolls dice, and whatever number it lands on is how many sips their daughter has to take of prep. I was amazed at this brilliant trick to ease the struggle of getting the prep down, and it inspired me to dig a little deeper and ask the IBD community what their “tips and tricks” are.
This week on Lights, Camera, Crohn’s read firsthand advice from caregivers and patients of all ages. My hope is that you find comfort and maybe even a new idea or two to make your next prep a little less stressful.
Firsthand advice for pediatric IBD caregivers
Mara’s daughter has IBD and has already been through eight colonoscopies in just five years. She says the dice game was a huge success for their family the first time around:
“She was at the perfect age for a little competition as motivation with a reward at the end for the winner…of course she always won. It was honestly so easy to prep her I was shocked.”
However, being NPO (derived from the Latin saying ‘nil per os’ or nothing by mouth/no food or drink) after midnight was NOT easy.
“There were lots of tears and anger directed at us. We bought her a special blanket and stuffed animal, which helped diffuse some of that anger.”
As many caregivers know, every prep is different. Mara recalls their second scope being much more difficult, requiring hospitalization and an NG tube after her daughter couldn’t keep the prep down. Now, they focus on giving their daughter as much autonomy as possible, letting her choose flavors, snacks, and activities.
“On prep days or days, she must be NPO, dad and I also follow that diet. It gives her a sense of belonging and that we are struggling right alongside her. We’ve done it for all eight scopes, and we will continue to do it if she needs us to.”
Over time, Mara says they let their daughter lead as much as they can. They give her a “yes” day.
“Whatever she wants (within reason) to eat or drink. Gummy bears, sure. Popsicles, sure. Want to try to mix three different Gatorades? Why not? She wants to watch TV while she preps or play hockey, absolutely.”
Emily’s Family Emily has three daughters with IBD (now ages 9, 12, and 15) who’ve been doing preps for over a decade. Their youngest had to prep for a scope when she was only 21 months old. Their top tips include:
Only prepare 8oz of the drinking mixture at a time. With MiraLAX prep, we let them pick a new flavor to mix each 8oz.
Think outside the box with the liquids for MiraLAX! One preferred water once! (With other electrolyte drinks that day.) One daughter does her whole prep with tea and chicken broth. (Add MiraLAX after the liquid is warmed.)
Use distraction!! This is our biggest piece of advice. We surprise the girls with a new activity the day of prep. They know there will be something fun to do – just not what it is. We have gotten Lego sets, multi-step craft projects, etc. We pick something that we can partition up and give them one part at a time in celebration for ounces drunk!
Keep them active. We have found that the girls tolerate the large amounts of liquids better if they get up and get moving! In the warmer months, they go walk laps around the driveway between cups of the prep.
Pick the “fun” liquids together ahead of prep day. Since they normally cannot have juice or soda, they pick out a few drinks that they are excited to have. This helps them to drink more, once the MiraLAX prep is complete.
I set timers for myself for the day of prep for every 10 mins or so. Just to check in on their drinking. It’s easy to lose track of time and accidentally go 30 mins (or more!) without drinking.
Pack a bag of supplies for the scope day. We always take extra clothes and baby wipes for any accidents. Games/books/crafts are great to keep the girls distracted during the wait before their procedure time. We take some water/light snacks for afterwards. (Check with your providers to see what/when your child can eat afterwards.) Chapstick is always requested by mine now too.
Remember that you can speak up and (nicely!) ask for what your child needs to make them comfortable. For example, at our hospital, the kids usually get their IV’s after they are sedated with some gases through their breathing mask. This is great to avoid needle anxiety for many kids. However, mine have taken a dislike to the masks and the smell of the gas. Since they get regular med infusions, they prefer to get their IV’s back in the holding area and then use the IV for their sedation to sleep. While not the normal procedure, the anesthesiologists and nurses have kindly worked with us to do it the way my kids prefer.
Cindy’s Perspective Cindy, mom to a teenage daughter with Crohn’s disease, says scheduling scopes early in the day is key. Even if you have a teen who likes to sleep in, sleeping in is worth nothing if you already feel like crud due to the prep. She emphasizes advocating during IV placement and following your gut as a caregiver:
“A parent’s intuition of how much is too much comes into play, and you’ve got to listen to that voice. Tell the nurse you (parent and child) did your best to complete as much of the prep as possible. If you can’t finish it to a T, they can still make it work. They know they are working with a child. If they are having trouble placing an IV, advocate for your kid. Give them two tries and then request another person to try. We’re still traumatized from watching them work for 10 minutes to get an IV into my dehydrated and scared 9-year-old, and I think that trauma will live with us both forever.”
She also believes in being honest with your child without over-preparing. Start the conversations when it’s time, but don’t talk about it for days or even hours beforehand.
“This is not going to be fun, and it won’t feel good. But I know you can do it and we are going to do it together because I will be beside you every step of the way. Here are the steps we will take and outline them in age-appropriate detail. Let’s think about how amazing this is going to be once it’s done! This is our focus for the next 24 hours… that moment when it’s done… that will be the best! As soon as you are done at XYZ time tomorrow, we can celebrate and go back to normal life, and you can eat whatever you want.”
Additional feedback for pediatric patients
“For pediatric prep, popsicles are necessary. Blue popsicles allow kids to “poop blue,” which many like. The Gatorade with the MiraLAX is the easiest for them to get down. We tried magnesium citrate once and it was a disaster. Gatorade is where it’s at. Also, we make it a party. Popsicle party. Jokes and TV while pooping. Anything to keep the mood light.”
“Turn the ordeal into a scavenger hunt by completing parts of the prep with small stickers to earn up to something whether it be completing a picture or something to distract when prep is working.”
“My daughter’s first prep at home didn’t go well, but prep while in-patient thru NG tube really worked.”
“If the hospital or your GI team has a Child Life specialist, they can send prep books to families ahead of time so they can help prepare kids for what to expect the day of the procedure.”
“Bribes! Lots of bribes! New toys or games. Legos keep little ones busy. Family doesn’t eat in front of them. Lots of snuggles. Clear your schedule to spend time with them. For young kids, put all food out of reach or lock the pantry so a hungry little one doesn’t get into something they can’t have and make you have to cancel the procedure, which is always my fear!”
“I have a prep approved Starbucks order—Mango Dragonfruit refresher, Venti, no ice, no Dragonfruit fruit inclusions, peach juice blend, in my personal cup … I like to line up cups so I can visually see how much is left and removing one feels like an accomplishment. A seasonal suggestion is using an advent calendar and dividing prep by 24 and opening one door after each one…just make sure the prizes are not food!”
“Arts and craft activities and projects can be a good distraction. Recently gave a sensory art bin to a VEO-IBD patient through their first scope as a kid it helped me to have new things to do.”
“My mom fasted with me when I was doing the prep as a kid! My tips now as a mom myself are to make Jello without Red 40. Ramen seasoning dissolved in water tasted way better than broth to me as a kid…I know that’s not good for you. I would make it a fun and relaxing day, so your kiddo is distracted. I would recommend not watching TV or YouTube because there are so many advertisements for food everywhere and it didn’t help distract me much. I advise having a movie marathon instead!”
“We didn’t eat out much when I was a kid, so eating out with my parents only was a big treat for me to look forward to after starving the day before! Back in the day, GIs used to do a combination of drinkable prep and suppositories for pediatric patients, and I’m glad my mom did the suppositories for me because it was not something else you had to drink. Ask pediatric GIs about low consumption prep so your child doesn’t throw up.”
“When I was a pediatric patient, my mom took me to the store to pick out different drinks for the mix, Jello flavors, etc.… which would make it fun picking it out myself and this also gave me a sense of control in a very out my control situation. My mom always fasted with me, which I appreciated not feeling alone in it. I was also able to pick the restaurant to go to after for something to look forward to!”
“Have your child drink their prep in a fun container., a Disney theme with a silly straw. For adults, use a wine glass or fun mug. Cheers!”
“My 12-year-old just had their first colonoscopy. As a Crohn’s patient myself, I have done one every other year for 25 years and it was hard to watch him go through it. He was tougher than me. The hardest part was him not eating! He had to do a full two days of clears only—per our doctor’s recommendation. That’s my hack as an adult, too. I start taking a Dulcolax dose and not eating a day or two earlier than recommended. You only have to drink the drink until it’s clear in the toilet. The milder/longer prep is easier on me and saves me drinking half the magnesium citrate drink.”
“My daughter couldn’t get any of the prep down at age 16 and by this summer, at age 19, she felt ready. This time we tried over the counter prep of MiraLAX and Dulcolax. The doctor said if she did it this way, she would need to fast for 48 hours instead of 24. She was fine with that. She started taking a couple of Dulcolax tablets at 5 pm the night before. Then, we put half a bottle of MiraLAX into Sprite. She drank a cup every 10 minutes until it was gone. We did the same thing a few hours later. She was clear before going to bed at night. It was easy and stress-free for her.”
“My parents would set me up with my iPad for movies, a desk chair, and a blanket in the bathroom so I could go back and forth from the toilet easier.”
“Make MiraLAX with white grape juice instead of Gatorade! Drink with a fun straw so you can put it on the back of your tongue and taste less. Put on headphones with loud music to distract your sense from the taste so you can drink the prep faster.”
“I confirmed with my child’s GI that colorless cotton candy is a clear liquid! Obviously in moderation, but this could be super helpful for kids and adults who need a different texture than liquid or gelatin.”
Prep Hacks for Adult Patients
Our IBD family had plenty of creative hacks for adults, too:
“The MiraLAX + Dulcolax prep hands down!! I’ve tried them all, and it’s tasteless and easiest.”
“Lemonheads or lemon jolly ranchers RIGHT after you get done drinking a dose!”
“Gummy bears and lifesavers! I love having stuff to chew. I also had pickle juice shooters, which gave me some salty/sour taste to balance all the sweet stuff. I also keep my schedule open for the remainder of the day and allow myself to relax.”
“I put my Suprep in the fridge (even though it says not to) and it makes it SUBSTANTIALLY easier to drink (and doesn’t seem to make it less effective in any way). I also buy myself a new book to read or save a special TV show episode, so I have something to look forward to when I’m drinking prep at 2 in the morning. Colonoscopies are miserable and until they figure out how to make them a nicer experience, it’s great to team together to gather the best tips.”
“Clear Gummy Bears!! This keeps it fun for all ages! Here’s a recipe!
“Drinking chicken broth throughout the day. This gives energy and takes away the bad taste of the prep drink. As a kid, my sister used to make a colonoscopy prep kit. Every 8 oz. I drank; there would be a little gift or activity to do. For example, after the first 8 oz., I got a nice bottle to drink the rest from. The next thing was a Lego kit or a paint by number.”
“I begin my prep four hours ahead of their suggested time, so I can sleep through the entire night. Getting up in the middle of the night, especially for children to complete round two of the prep is just borderline inhumane. What a nightmare. The catch is waking up and hydrating with enough water before the anesthesia cut-off which requires not to drink anything 2 hours before the procedure.”
“Wet wipes and diaper cream are super helpful!”
“A lot more MiraLAX than the prescription prep. And gummy bears (except red ones) are a gamechanger. They let you feel like you’re eating, but they liquify in your gut.”
“Rotate flavors and get some protein through broths. Have broth, then 2 hours later do Jello or change the texture and taste, then 2 hours later do broth and rotate.”
“Strain chicken noodle soup to just have the clear broth, it has more sodium.”
“Avoid eating vegetables/fruits/seeds three days before. Taking preps that you can take with a glass of water and then drink two liters of tea or water.”
“My son, Andrew, has autism and Crohn’s disease. When he has to do colonoscopy prep, he likes to listen to Disney music and use a timer. Andrew is almost 30 years old and has been having to do colonoscopies since he was 17. This past year, for the first time, he did the pill prep and loved it. He used a timer to tell him when to take the next pill. Andrew told me he will never go back to liquid prep. Pill prep was so much easier for him, especially with his sensory issues.”
“Take notes on all preps you’ve been assigned and take notes and photos of what it felt like. I found one that was less painful for me, and I always request it. I also alternate sips out of a straw with apple juice. I drink the prep in my kitchen, near a bathroom, and watch TikTok’s while drinking to distract myself.”
“I only eat soft foods 2-3 days before, make sure to hydrate, and follow the instructions they give about not eating things like seeds or nuts a week before.”
“Have a bidet and diaper cream ready.”
“Desitin, Gatorade that is the Frost Glacier Cherry flavor (not red) frozen or really cold to help me stay hydrated.”
“Make freezer pops out of the Gatorade prep mix.”
“For me—finding fun drinks, whether a tea at Starbucks or stocking up at the grocery store, really makes it feel less horrible. I started this as a teenager. I make a list of movies or shows I want to binge. If you’re comfortable with it, have a friend there to distract you—at 15 years old, my boyfriend stayed with me all day for my surgery prep which was the same as a colonoscopy and we watched movies and he distracted me/made me laugh and at times I forgot what was going on!.”
“Savory liquids to balance out the sweet!”
“Mix the prep with Crystal Light Lemonade—instead of the lemon mix the pharmacy provides. Drink the prep through a straw and suck on hard candy (e.g., Werther’s Originals) in between doses to get rid of the taste and have something to look forward to.”
“Take SUTAB (pill prep) and Zofran and then fall asleep. Your bowels will wake you up and you’ll avoid the nausea but start the pooping process. I do the same for the morning dose! If you vomit, at this point it’s fine, just hopefully after the nap and pills are digested!”
“Gummy bears/worms!”
“Pill prep has been a gamechanger for me!”
“Extending the clear liquid diet an extra half day or full day helps a ton with prep.”
“You have to have a movie downloaded on a device that you can have in the bathroom and a pillow for the toilet seat for your back. I’m a fan of disposable diapers because after the first several poopy poops, you get to the drizzle stage and then it’s annoying to have to get up every two seconds towards the end. They also come in handy when you’re sleeping and when you’re traveling to the procedure.
“Before I have a colonoscopy I write down positive affirmations and thoughts and there is like a Table of Contents that’s like “When you’re sad” or “When you need a good laugh” and it really helps me though the ups and downs, although it may sound silly. I choose what to drink and I always have my good luck drink which is blue Gatorade.”
“Use nuun electrolyte drink instead of Gatorade!”
“My personal hacks are to follow what you know works for you. I followed the timings of when to take what from the last instructions and it wasn’t the cleanest prep. I should have listened to my gut and started doing that earlier. I resort to drinking Ensure Plus instead of just relying on broth and soft foods to keep me feeling full. It’s helped me SO much. I know not everyone can tolerate it or like it, but when I was on a liquid diet about a year ago for two months, I only had Ensure Plus. I got used to it. It’s now a lifesaver, especially if I’m traveling or on the road and not sure what food I will have access to. It helps to start the diet a bit earlier, so mash and fish instead of just toast and pasta.”
“I mix apple juice with my Suprep! I also always buy bone broth or stock because the protein per cup is higher. I like the Zoup brand because there’s 3 or 4 gram of protein per cup. I also get the College Inn brand bone broth which has up to 10 grams of protein per cup.”
“Gummy bears!! Just not the red or purple ones. Just being able to chew something helps! Progresso Chicken Soup. Use a metal strainer to strain out all the solids and then sip the broth. It’s thicker and has more flavor than regular stock and it’s just more satisfying.”
“Remind yourself “this is only temporary.” Having loved ones supporting also helps to distract a little, which makes it easier to get through. Focusing solely on drinking cup after cup can seem very overwhelming.”
“Start a low residue diet a few days early even before your doc says to. Mix prep with Sprite. Have hard candies or gum to chew on while doing prep. Use a measuring cup or something to lines to indicate how much to drink.”
“I really love the Trader Joes less sugar lemonade mix with water for my prep. I chugged and it was so delicious! Also, ice pops like the good pop brand were yummy.”
“Gummy bears! Making ice cubes out of juice and chewing on the ice.”
“Make sure it’s cold! Drink with a straw, chew Juicy Fruit gym in between drinks, this helps cut the saltiness. Do two-step prep if your practitioner allows it (half the night before and the other half in the morning). Ask if you can use one of the lower volume prep or the MiraLAX and Gatorade prep.”
“For the MiraLAX prep I use two different flavors so I can alternate when I get sick of one.”
“Mix the prep early and put it in the fridge. Have music and TV on to help distract yourself.”
“While most people say to drink it cold, I prefer my prep at room temperature so I can chug it faster.”
“Always lots of ice and drinking thru a straw. Big gulps. Have a station in the bathroom with a laptop streaming Netflix. I also got a Bidet before my last one!”
“Gummy bears! I buy the Haribo ones and don’t eat the red ones. My favorite prep hack thus far. It’s great getting to chew something when everything else is liquid.”
“Lots of mint tea when the cold chills kick in a few hours before you have to go in for the procedure.”
“Use a Pedialyte jug and ensure it is very cold and drink the prep with a straw. The slower you drink, the worse it is. I always chug it super-fast through a straw and it gives me 10-15 minutes between each cup. Have lots of other drinks that you don’t normally consume to make it fun and have lots of juice, Jello, soda, and popsicles on hand!”
“I’ve turned prep days into self-care days. I binge shows, nap, relax, and try to take care of myself.”
“I like to alternate between sweet/cold beverages and salty/warm soups when I am trying to stay hydrated before starting prep. Sprite/popsicles/lemon ice and then chicken broth.”
“I chase my prep by sucking on approved colored Lifesavers. They truly are a lifesaver for me. I could never do it without them.”
“I recommend the pill prep instead of liquid prep if you’re neurodivergent or have issues with taste and textures. Maybe keep a backup on MiraLAX and Gatorade or juice in case you can’t tolerate the liquid prep. If you know you get nauseated, take prescription anti-nausea medication like Zofran before you begin the prep. I like Squatty Potty and having wipes to dab and pat my skin. A Peri Bottle can be useful. If you’re prone to hemorrhoids or know you have vascular issues like pelvic congestion syndrome, apply hemorrhoid cream in advance. Keep Zinc Oxide handy if it starts to burn or feel raw. Get into comfortable clothes that’s easy to get in and out of in the bathroom. I personally use a heating pad and Bentyl for intestine cramping. I usually make sure I’m scheduled first thing in the morning, and I ask for extra IV fluids.”
The Takeaway
Colonoscopy prep is a universal challenge in the IBD community, whether you’re a child facing your first scope or an adult whose been through dozens. But as the stories above reveal, there are countless ways to make it less daunting through creativity, distraction, teamwork, and sometimes sheer humor.
I personally start a full liquid diet 4-5 days before my scope to ease the actual prep. I make sure I have Zofran on hand to manage my nausea (I always vomit, regardless), and I prefer the SUTAB pill prep. I’ve done multiple preps since being diagnosed with Crohn’s disease in 2005, and my last three preps, SUTAB pills have been the “most tolerable.” While MiraLAX/Dulcolax is popular, I never enjoyed having to drink such a large volume of liquid. Having gummy bears on hand is also a necessity for me! My husband always takes the day off work, and we go out to breakfast and spend the day together afterwards as a reward for all I went through.
If you’re gearing up for a prep, remember you’re not alone. Thousands of IBD patients and caregivers are walking this same path and learning tricks along the way. Find what works for you (or your child), advocate for needs, and give yourself grace. And once it’s done? Celebrate that victory meal and the relief of getting through another milestone in your IBD journey.
When you live with Inflammatory Bowel Disease (IBD), you become an expert in knowing life can throw you curveballs at any given moment. Those curveballs are especially worrisome and scary during pregnancy and after you become a mom.
For one IBD mom who wishes to remain anonymous, that curveball came in the form of a rare and dangerous vitamin K deficiency that caused life-threatening complications for both her and her newborn son after delivery. Now, two years later, a published medical case study based on their experience is helping raise awareness of this rare issue, offering hope that future pregnancies in the IBD community might benefit from earlier detection and intervention.
Diagnosed Young, Navigating the Unknown
This mom was diagnosed with Crohn’s disease at age 13, and now at 34, she’s lived with IBD for more than 20 years. Her journey has included numerous medications, including a long stretch on Humira, which she remained on during her pregnancy, and four partial small bowel resections. She’s also undergone several exams under anesthesia due to complications like abscesses and fistulas.
Thankfully, during her pregnancy, her Crohn’s was well-controlled with no active disease, making the post-delivery complications much more shocking.
A Sudden Turn After Delivery
After giving birth to her son (we’ll call him “B”), what should have been a joyful moment quickly turned traumatic.
She spent 16 days in the hospital, including three in the ICU, while her newborn faced a 23-day NICU stay. The cause? A severe, undiagnosed vitamin K deficiency, which led to hemorrhaging in both mom and baby. The medical team was blindsided—none of them expected this.
Understanding Vitamin K Deficiency & IBD
Let’s get one important thing straight first. This situation is not about skipping the vitamin K shot that newborns typically receive. The mom explains:
“It’s imperative that newborns receive a vitamin K shot after they are born to prevent vitamin K deficiency bleeding. The American Academy of Pediatrics recommends that all newborns receive a single dose of vitamin K, because babies are naturally born with very little in their bodies. In our case, my son did get the shot—but because I was unknowingly severely deficient in vitamin K during pregnancy, his vitamin K levels in utero were dangerously low, leading to a brain hemorrhage before he was even born. The bleeding he experienced was similar to what some babies experience when they don’t receive the shot, but in our case, it happened earlier—and was not caused by withholding care. In fact, he needed far more vitamin K after birth to restore safe blood clotting levels.”
This vital distinction can prevent confusion and reinforce just how important that standard vitamin K shot is for all newborns.
What She Wants Other IBD Moms to Know
“Knowing what I know now,” she says, “I want fellow IBD women to understand a few key things about vitamin K deficiency during pregnancy:”
This is rare. Most pregnant people with IBD will never encounter this issue. “I hope that offers peace of mind. But as we all know, knowledge is power—especially when you live with IBD.”
If you’ve had bowel resections or are deficient in other fat-soluble vitamins (like A, D, or E), consider bringing this case study to your GI and OB/Maternal Fetal Medicine (MFM) doctors. Ask about checking vitamin K levels, as well as PT/INR and PTT, which monitor blood clotting.
You can develop a deficiency during pregnancy even if you’ve never had one before. “Outside of pregnancy, I had no clotting issues. But between my history of resections and my baby’s increasing demand for nutrients, my levels dropped—and no one knew.”
Looking Back: What She Wishes Had Been Done
“If we had been monitoring my vitamin K levels, PT/INR, and PTT throughout my pregnancy, we likely would have seen early warning signs,” she says. “These aren’t standard tests, but I hope someday they will be for IBD moms with similar risk factors.”
A Silver Lining in the Study
Despite the trauma, having their experience turned into a published medical case study brought a sense of closure.
“When they told us they wanted to publish it, I felt incredibly validated. This wasn’t just something we lived through—it’s now out in the world to potentially save lives. That’s the best-case scenario for us.”
The comprehensive care team—consisting of her OB, MFM, GI, hematologist, and PCP—remained closely connected throughout the experience. After both mother and baby were stabilized, Ohio State’s hematology team and Nationwide Children’s Hospital worked together to identify the deficiency as the root cause for both patients.
“They didn’t miss anything—they acted on the knowledge they had at the time, and when things went south, they sprang into action. I’ll always be grateful for that.”
“B” Today: A Story of Resilience
Despite a traumatic start, B is now a thriving, happy, and a miraculously healthy two-year-old.
“We were so worried about long-term impacts due to the hemorrhage in his brain, but he is now meeting and exceeding all his developmental milestones. He doesn’t need any additional support. It’s truly a miracle.”
His early care included close monitoring from neurology and the Early Development Clinic at Nationwide Children’s Hospital, along with early intervention specialists. Today, all those appointments are in the rearview mirror.
What About Future Pregnancies?
The reality is that this situation may recur if she decides to grow her family.
“My doctors believe I’d face similar risks, so we would monitor everything very closely: vitamin K levels, PT/INR, PTT and I’d likely receive IV vitamin K infusions throughout pregnancy to stay ahead of any deficiencies.”
Lifting the Tide for Others
After two decades of managing Crohn’s, she knows how isolating chronic illness can be.
“It’s hard. It’s lonely. It’s easy to feel invisible. But finding others who share their stories and who get it has been a game-changer for me. That’s why I’m sharing this now. Even if this specific challenge never affects you (and I truly hope it doesn’t), I hope you feel a sense of solidarity. A rising tide lifts all ships and if sharing our story lifts someone else’s experience just a little, it’s worth every word.”
If you’d like to contact this IBD Mom don’t hesitate to reach out to me, and I will connect you. It’s stories like this that help to pave the way for future families.
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.
What do you get when you mix chronic illness, dark humor, artistic storytelling, and a deeply broken healthcare system?
You get The Out-of-Network Network — a sharp, satirical, and heart-achingly relatable newsletter born from the experiences of patients who’ve seen (and survived) the absurdities of the American healthcare system firsthand.
Founded by Ian Goldstein, a Crohn’s disease patient and comedy writer, and Amanda Lehr, a writer navigating ankylosing spondylitis (AS) and mast cell activation syndrome (MCAS), OONN is more than a newsletter. It’s a lifeline. A laugh. A community. And most importantly — it’s a call to action, cloaked in clever cartoons and short, punchy stories that make you feel less alone in the madness of it all.
Meet the Founders
Amanda Lehr may not have Crohn’s, but as she puts it:
“I’m a fellow member of the ‘My Body is an Autoimmune Fight Club’ community.”
She’s lived with ankylosing spondylitis since her teens and recently received a diagnosis for MCAS — a condition that turns everyday encounters into allergic warzones.
“Being in my body is like trying to live in the booby-trapped Home Alone house: if there’s not a real intruder around, I’m the one getting hit by swinging paint cans and having my head set on fire.”
For Ian Goldstein, Crohn’s has been a two-decade battle, from bowel resections and obstructions to navigating biologics like Humira, Skyrizi, and Rinvoq. His life revolves around the proximity to hospitals, navigating insurance loopholes, and, like many chronic illness patients, learning to laugh at the chaos.
“I find so much humor in the world of healthcare. Not in the pain we patients deal with. But in the absurdity of interactions and situations that doctors, insurance companies, and people ignorant to our plights bring.”
How Out-of-Network Network Was Born
It all started with what Amanda and Ian lovingly refer to as “The Luigi Incident.”
A moment of internet virality around a meme, combined with a groundswell of people sharing stories about healthcare trauma… it lit a spark. They saw an opportunity to make something lasting.
“Knowing how fast the news cycle moves, we didn’t want this conversation to get lost in the shuffle,” Amanda shared.
So, they built OONN: A weekly Substack newsletter that pairs short healthcare horror stories with custom illustrations — funny, heart-wrenching, eye-opening, and artfully absurd.
“The situations we face aren’t inherently funny,” Ian says. “But how incompetence plays out — lazy doctors, power-hungry insurers, $70,000 hospital bills for inedible food — that’s darkly hilarious.”
Amanda, meanwhile, loves the diversity in voice and style across their contributors.
“As a writer, I enjoy collaborating with such distinct voices and artistic styles. As a human, I’m moved by how we all come together around this common belief: healthcare should not be a luxury product.”
The Common Denominator
So, what’s the throughline in the stories they receive?
“It’s a combination of incoherence, incompetence, and institutional hostility,” Amanda explains. “Sick and disabled people end up spending hours fixing mistakes that could bankrupt them.”
“People are crushed by sky-high bills and red tape,” Ian adds. “And those burdens pile onto lives already made difficult by chronic illness.”
More Than Just a Newsletter
For both Ian and Amanda, OONN is as therapeutic as it is informative.
“The first word that comes to mind is catharsis,” Ian says. “Reading someone else’s story — and laughing through it — tells me I’m not alone, and I’ll get through it.”
Amanda agrees, “It’s not better medicine than my biologics, but it’s still pretty damn good.”
Want to Share Your Story?
The Out-of-Network Network is always looking for contributors — writers and illustrators alike. If you’ve got a healthcare horror story, a cartoon-worthy insurance mishap, or just want to laugh (and cry) with the community, you can email Ian: ianscottgoldstein@gmail.com or Amanda: amanda.lehr@yahoo.com.
Final Advice from the Frontlines
Ian shares one last nugget of wisdom — a survival tip for navigating healthcare:
“Record everything. Record your doctor when they give you results. Record your call with your health insurance. Just make sure you’re legally allowed to. It helps you remember things, and it protects you if you need proof later.”
You’re Not Alone
Whether you’re battling Crohn’s, AS, MCAS, or just trying to make sense of a $3,000 copay for a basic test, Out-of-Network Network reminds us that laughter really is the best medicine (after your biologic infusion, of course). And that in this broken, bureaucratic mess of a system, solidarity and storytelling might just help us all stay sane, one cartoon at a time.
You can also subscribe to their weekly newsletter on Substack and follow them on Instagram: @out_of_network_network, @iangoldsteinyes, and @amandamlehr.
When House Bill 544 passed the Montana Legislature and was signed into law May 1, 2025, it marked more than just a policy victory—it became a symbol of hope and action for families affected by Inflammatory Bowel Disease (IBD), especially those navigating the challenges of very early onset (VEO) IBD.
In the latest article on Lights, Camera, Crohn’s, we hear from the Founder and Executive Director of VEO Guardians, Rachel Markovich. She is not only a caregiver, but a passionate advocate behind the bill. Rachel shares the impact this is expected to have on families, the journey to getting the bill passed, and her hopes for this to set a precedent for the rest of the country.
What is House Bill 544, and why does it matter?
HB 544 is a transformative piece of legislation designed to eliminate two of the biggest hurdles families face when managing IBD: access to timely treatment and the threat of retroactive insurance denials.
The bill ensures that when a medical provider can present two efficacy studies showing a biologic treatment works in children of a comparable age, insurance companies must approve the request. This provision reduces dangerous delays in treatment— a common and deeply frustrating barrier for caregivers and physicians alike. Click here to see the news coverage.
The second part of the bill protects all Montanans by prohibiting insurers from denying coverage retroactively after a medication has already been approved. In the unpredictable world of chronic illness, this gives families something they often lack: peace of mind.
How did this caregiver become involved?
For Rachel as a mom of a son with VEO-IBD, this fight is personal.
“My son was diagnosed with VEO IBD at just 22 months old,” she shared. “Thankfully, his health has stabilized, and that gift gave me the time and perspective to help others.”
What began as outreach soon turned into a movement. With the support of VEO Guardians and a network of dedicated advocates, she testified in Helena and worked tirelessly to humanize the legislation. “It was an emotional and transformative journey—one built on compassion and resolve. It’s not just about celebrating a win—it’s about raising awareness for what this means for families across the state.”
The mission of VEO-Guardians was previously featured on Lights, Camera, Crohn’s, you can check out that article here.
Kim Longcake is an Advanced Nurse Practitioner in Montana. She says, “It is such an honor to be a part of this amazing organization. I am proud of the work we have done to protect access to care for Montana children and grateful to have a resource for families in their greatest time of need.”
Will this bill inspire similar legislation across the country?
Yes—and momentum is building.
“We’ve been in touch with national organizations like the EveryLife Foundation and the Crohn’s & Colitis Foundation. They’re excited about what we’ve accomplished here in Montana, and we’re developing a strategy to help other states follow suit.”
For those interested in bringing similar legislation to their own communities, the message from Rachel is clear: “We’re here, and we’re ready to help.”
How can people get involved, especially if they don’t live in Montana?
“Stay connected with us,” she urged. VEO Guardians regularly shares updates, advocacy tools, and family stories through their social media channels and newsletter.
Anyone can reach out directly for guidance, support, or to get involved in expanding the model elsewhere. “We want to help others navigate this path.”
What has VEO Guardians accomplished so far?
The organization recently helped a family avoid a $6,200 charge when a job loss disrupted their child’s insurance—ensuring timely infusion treatment. They’ve signed a reimbursement agreement with Community Medical and are working to secure similar partnerships with Montana’s two other major hospitals.
They’ve also welcomed a new board member with expertise in family counseling and plan to launch free counseling services and 504 plan support on their website soon. And for children newly diagnosed with IBD, a teddy bear delivery program is already in motion.
“Every step we take is rooted in our mission to support, uplift, and empower the IBD community.”
Final Thoughts
“In the darkest moments, we often find the strength to shine the brightest,” she said. “This bill is proof of what compassion and community can accomplish. To anyone facing this diagnosis—you’re not alone. There is a path forward, and we’re walking it together.”
Rachel tells me local gastroenterologists in Montana whom she’s spoken with are thrilled the bill has been signed because it removes the red tape and allows doctors to do what they do best—treat their patients. It’s a win for everyone.
“It fills me with pride, gratitude, and hope,” Rachel said. “What once felt like a long shot is now a new reality for countless families. I know it will ease the road for many who follow.”
To stay up to date or get involved, follow VEO Guardians on Facebook and Instagram, or visit their website to sign up for their newsletter.
When most kids were running around their middle schools full of energy and excitement, Taylor Gautney was quietly fighting an invisible battle. In sixth grade, while his classmates joined extracurriculars and laughed through lunch breaks, Taylor was barely making it through the day. Many afternoons were spent passed out on the couch after going the entire day without eating. One day, after skipping lunch again, he collapsed on his way back to class. That moment changed everything.
At first, doctors suspected celiac disease. He was placed on a gluten-free diet after an initial endoscopy, but nothing improved. For years, the mystery lingered—until a more thorough examination revealed the real culprit: Crohn’s disease. A new diagnosis, a new treatment—Humira—and a new outlook on life began to take shape.
Now in remission and attending Arizona State University (ASU), Taylor has transformed his story from one of struggles to one of strength. But it wasn’t always easy. This week on Lights, Camera, Crohn’s a firsthand look at what it was like to be diagnosed with IBD at such a young age and how his first year of college went living across the country from his family.
“Just Keep Fighting”
Looking back, Taylor wishes he could tell his younger self one thing: “Just keep fighting and enjoying the positives in life.” Being diagnosed with a chronic illness at age 11 felt like a devastating detour. He admits that it changed the way he viewed the world and himself. “I started to think of every aspect of life as negative,” he recalls. But over time, Taylor learned to embrace small joys, and most importantly, to appreciate the unwavering support of his family.
Taylor’s mom, Anna, says, “It’s crucial to advocate for your child and speak up for them if medications are not working. It is also important to showcase to your child that you are in this with them, help them find a community, such as the Crohn’s and Colitis Foundation. This way, they can meet people who have what they have and formulate a sense of belonging.”
Holding On Through the Hard Days
Taylor wants young people diagnosed with IBD to know that while the patient experience is incredibly challenging—often filled with procedures and surgery, flare days, and quiet battles with your own body, it doesn’t define who you are. “People can’t see the diagnosis from the outside, they see your personality and exterior self,” he says. “Just be yourself, let people come to you and support you, especially during a rough time like an IBD diagnosis.”
The Power of Family
Taylor credits his parents for being the steady foundation beneath his feet throughout the rollercoaster of diagnoses and treatments. “My mom has been my rock,” he says. She’s been by his side at almost every appointment and has researched tirelessly to understand Crohn’s. Taylor’s dad always makes time to show Taylor the world with family trips and unshakable support. “They have given everything to me and made my life so much easier after the diagnosis.”
Life at ASU with IBD
Taylor’s transition to college life came with its own set of hurdles, including logistical nightmares like getting his medication delivered to campus. But he’s found his rhythm. “It’s definitely not as hard as I thought it would be,” he says. One surprising blessing? His roommate. “He also had a medical condition that required shots, pills, and daily maintenance,” Taylor says. Their shared experiences helped them form an instant bond, even leading to grocery trips for IBD-friendly dorm snacks.
Taylor’s professors and friends have also shown deep compassion. He remembers an English professor who read about his condition in a personal essay and went out of her way to learn more about Crohn’s. “She made me feel really special and seen,” he says. His friends check in on him, make sure he’s got his injections, and understand when he needs to sit out from social events. “I thank my friends at ASU for their understanding and empathy.”
A Voice for the Voiceless
Studying sports journalism, Taylor dreams of becoming a play-by-play broadcaster for Major League Baseball—ideally for the Atlanta Braves. But his passion extends beyond sports. He wants to use his voice to make an impact and tell meaningful stories. One of the most pivotal moments in his life came when he was asked to be the Pediatric Honored Hero for the Crohn’s & Colitis Foundation’s Birmingham walk. “That one event gave me confidence to speak in public and really sparked my love for communication,” he says.
Now connected with the Arizona-New Mexico chapter of the Foundation, Taylor is committed to giving back. His mission? To reach kids and teens who are newly diagnosed and remind them they are not alone.
Final thoughts
Taylor and I connected after he was doing research for a college project and reached out to interview me about my patient experience and advocacy work. During our initial Zoom interview, I was so blown away by his positive attitude and how he takes on life with IBD. I asked him during the call if I could have the honor of sharing his story. While there are male patient advocates—we need more who are willing to share their story.
Taylor is wise beyond his years, so articulate, genuine, and kind. The sky is truly the limit when it comes to his future. If anything, living with Crohn’s disease since age 11 has helped show him all he’s capable of despite his disease.
You can connect with Taylor by following him on Instagram: @t.gautney or by emailing him: tgautney@asu.edu.
Polycystic Ovary Syndrome (PCOS) and Inflammatory Bowel Disease (IBD) are two conditions that can significantly affect a woman’s health, but many may not realize that there is a potential connection between the two. While they are distinct in their nature, the relationship between PCOS and IBD may be more intricate than previously thought. Living with both makes for a complicated patient journey and is not talked about enough.
This week on Lights, Camera, Crohn’s we look at these conditions, how they influence one another, and hear from several women in the chronic illness community who experience both.
What is Polycystic Ovary Syndrome (PCOS)?
If you’re reading this, chances are you are aware of what IBD is, but PCOS may be more of a mystery to you. PCOS is a hormonal disorder that affects the ovaries, typically during the reproductive years. It’s characterized by irregular periods, excess androgen levels (leading to symptoms like acne, excessive hair growth on parts of the body where hair is normally minimal, scalp thinning), and the presence of multiple small cysts in the ovaries. PCOS is linked to insulin resistance, obesity, and an increased risk of developing type 2 diabetes, heart disease, and endometrial cancer and impacts 1 in 10 women who are childbearing age.
The precise cause of PCOS is still not fully understood, but genetic factors and lifestyle choices (such as diet and exercise) play a significant role.
The Shared Link: Inflammation
Both PCOS and IBD are associated with chronic inflammation. This is a key factor that may connect the two conditions.
Chronic Low-Grade Inflammation in PCOS
Research has shown that women with PCOS often have increased levels of inflammatory markers, such as C-reactive protein (CRP). This chronic low-grade inflammation can affect the entire body and is linked to metabolic dysfunctions like insulin resistance and obesity, both of which are common in PCOS. Inflammation in PCOS can also exacerbate other symptoms, such as ovarian dysfunction and difficulty managing weight.
Inflammation in IBD
On the other hand, IBD is fundamentally a disease of chronic inflammation. The immune system mistakenly attacks the lining of the digestive tract, leading to the symptoms of Crohn’s disease or ulcerative colitis. This ongoing inflammation can lead to gut permeability issues, nutritional deficiencies, and an altered gut microbiome. The inflammatory process in IBD is often more severe and widespread than in PCOS, but the principle of chronic, low-grade inflammation links the two conditions.
How Might Inflammation Link IBD and PCOS?
Though PCOS primarily affects the reproductive system and IBD affects the gastrointestinal system, both conditions share inflammation as a common underlying feature. Inflammation in one part of the body can exacerbate the other condition, making both difficult to manage at one time.
Here are a few ways in which inflammation might connect these two diseases:
Gut Microbiome Imbalance: Both IBD and PCOS have been shown to be influenced by imbalances in the gut microbiome. In IBD, the gut bacteria are disrupted, contributing to inflammation and disease progression. Emerging research suggests that women with PCOS also exhibit gut dysbiosis, which could worsen the inflammatory profile in the body. This imbalance may be a link that exacerbates both conditions, potentially influencing the development and progression of each.
Immune System Dysfunction: Both PCOS and IBD involve immune system dysfunction. In PCOS, the immune system may not properly regulate inflammation, contributing to insulin resistance and ovarian dysfunction. Similarly, in IBD, the immune system is dysregulated, resulting in chronic inflammation in the GI tract. A common immune pathway may contribute to the co-occurrence of these conditions in some individuals.
Hormonal Imbalances: Inflammation in PCOS can lead to hormonal imbalances that impact not only the reproductive system but also other systems in the body. Conversely, chronic inflammation in IBD may affect hormone levels, potentially exacerbating PCOS symptoms. For example, inflammatory cytokines may interfere with the normal balance of estrogen and progesterone, further complicating reproductive health.
Metabolic Dysfunction: Both PCOS and IBD are associated with metabolic issues, such as insulin resistance. Insulin resistance often goes hand-in-hand with chronic low-grade inflammation in both conditions, and this can make the management of both diseases more challenging. Insulin resistance can worsen inflammation, and inflammation can increase the likelihood of developing insulin resistance, creating a vicious cycle.
Medication Overlap: Some medications used to treat IBD, such as corticosteroids, can also exacerbate symptoms of PCOS, especially in terms of weight gain, insulin resistance, and hormonal imbalance. Conversely, treatments for PCOS, such as oral contraceptives and anti-androgen drugs, may have side effects that impact gut health, potentially influencing the course of IBD.
Managing the Dual Diagnosis
For those dealing with both PCOS and IBD, managing these two conditions simultaneously can be a delicate balancing act. Treatment plans need to address both the hormonal imbalances of PCOS and the inflammatory components of IBD.
Anti-inflammatory Diet: A diet rich in anti-inflammatory foods, such as fruits, vegetables, whole grains, and omega-3 fatty acids, may help reduce inflammation in both the gut and the reproductive system. A diet low in processed foods and sugar can also improve insulin sensitivity, which is crucial for managing PCOS.
Probiotics and Gut Health: Since both PCOS and IBD involve gut health disturbances, introducing probiotics or focusing on gut-healing strategies could help improve the balance of beneficial bacteria and reduce overall inflammation. However, the use of probiotics should be carefully monitored in IBD patients, as some may have adverse reactions during flare-ups. This is a conversation to have with your GI, as there are many differing opinions.
Medications and Monitoring: Medications for IBD (such as anti-inflammatory drugs or immunosuppressants) should be balanced with treatments for PCOS. A healthcare provider may consider the impact of one treatment on the other, as certain drugs could worsen either condition.
Physical Activity and Stress Management: Exercise can help with both insulin sensitivity and inflammation. Regular physical activity helps control weight and can reduce inflammatory markers in the body. Additionally, managing stress through mindfulness or relaxation techniques can also reduce inflammation and improve overall well-being.
The Patient Experience: Read Firsthand Accounts from Women with IBD and PCOS
When researching articles, one of my favorite parts of the writing process is to connect with patients who live the reality of the subject matter. Having the patient voice—people who are willing to share their firsthand experience to help others is priceless. Here is what women with both IBD and PCOS shared with me:
Kayla: “I am curious how many women with IBD also have PCOS because both my sister and I have it. I am getting put on Letrozole in a few weeks to helpfully get me to ovulate. I also have super high AMH which makes sense if I have PCOS, but it’s extremely high so I assume that also means a lot of eggs which also is the same for my sister. It’s crazy because my sister and I have led quite different lifestyles, but our health conditions have been nearly identical! I’m hoping to join the PIANO study soon after this round of medications.”
Sam: “Both PCOS and IBD affect my body and cause inflammation. It can be really tiring to deal with both. Also, there isn’t a cure for either one. Getting pregnant with both was interesting. I had to be in remission with my Crohn’s and then deal with trying to get pregnant which was difficult because of my PCOS. Family planning is extremely stressful with both conditions. I will say that an IUD and being on a GLP1 and infliximab infusions have helped keep my inflammation under control. I also feel like both are invisible diseases and people just dismiss them.”
Stephanie: “I was diagnosed with PCOS after coming off birth control for the first time in six years when I was 22. I was diagnosed with ulcerative colitis at age 26, nine months after having my first child. I never had any symptoms of uc prior to pregnancy and childbirth. My doctors say there is no correlation between both, but something that has been super interesting to me and my husband is the weight aspect…as you know with IBD there are many periods of time when you’re either using the bathroom 10+ times a day or even afraid to eat because of unknown outcomes, which causes many IBD patients to be underweight. But I’m the opposite. I gain weight during those periods and have a very hard time keeping the weight off with both diagnoses, which I chalk up to the PCOS causing insulin resistance (PCOS is often referred to as diabetes of the ovaries)…even though my labs don’t always show insulin resistance. It’s been extremely hard finding doctors who talk about other ways to help my PCOS without birth control.”
Stephanie also takes Metformin. She says both diagnoses come with their own challenges, but the PCOS diagnosis causes her more frustration since most of the suggestions are just to “lose weight” or take hormones to mask the symptoms of the disease. She is excited to see where the research on this topic and learn more about how the co-morbidities coincide between both diseases.
Jami: “I have IBD, diagnosed after four years of struggling through university (both my twin sister and I have Crohn’s disease). I had a major flare in 2015 and after a year of struggling I had surgery to remove my colon. I have an ileostomy and have had every surgery for Crohn’s since. Rectum removed. Stoma repairs, hernia repairs, fistulas, abscesses. I surprisingly got pregnant easily with my first daughter in 2019 after testing to ensure my surgeries did not disrupt my ability to conceive, but in 2021 I started to struggle to conceive and found out I had PCOS. I went to a fertility clinic to help to conceive my second child, and did not need IVF. Instead, I was given hormones and injections to help me ovulate properly and then I was on progesterone to help maintain the pregnancy for three months. If I’m being honest, I feel the C-vid vaccine screwed with my hormones. I don’t regret getting the vaccine as I’m immunocompromised from my biologic, but it was after the vaccines that my hormones were messed up and I started to have pain with my menstrual cycles (terrible cramping and awful breast pain before and during…which I never had before).”
Lindsey: “Crohn’s and PCOS here! I didn’t get diagnosed with PCOS until 2024 after trying to conceive for a couple of years. My only symptom is irregular cycles and multiple follicles on ultrasounds, so the diagnosis came as a shock to me.”
Gabby: “Living with Crohn’s is already a full-time job, but being diagnosed with PCOS added another complex layer. Both conditions affect my hormones, digestion, and inflammation—and often, managing one feels like it’s aggravating the other. PCOS makes it harder to control symptoms during Crohn’s flare-ups, and vice versa. I’ve learned to be incredible mindful of my diet, avoiding gluten and inflammatory foods to reduce triggers for both conditions. As a Latinx woman, one of the most frustrating things has been finding a way to manage my symptoms without feelings like I have to give up the foods that connect me to my culture. Traditional Cuban and Dominican dishes are rarely considered in medical diets or nutrition plans, and I’ve often felt overlooked in conversations about what’s “safe” to eat. But even with careful planning it’s not always enough.”
Gabby went on to say one of her biggest ongoing challenges is keeping her hormones balanced, especially during periods of high stress, something that often happens during a Crohn’s flare. She says stress tends to amplify both conditions, causing a domino effect of symptoms that can be physically and emotionally draining. Some days, she feels like she’s chasing balance that’s always out of reach.
Maddie: “My uc diagnosis came December 2012 when I was 14, wasn’t 8th grade such a fun year! I was put on mesalamine for the uc and birth control and spironolactone for my PCOS and didn’t have a second thought about either for 8.5 years, until I was 22 and my uc flared in June 2021. After the flare settled in July 2023, I stopped birth control a couple of months later to prepare to try to conceive after the six-month clearance. Stopping HBC didn’t impact my UC at all thankfully, which was a worry. We started TTC in April 2024 expecting it to take a while due to PCOS, but with a regular cycle, we conceived on the third cycle of trying in June 2024. We experienced a missed miscarriage where the baby stopped growing at 8 weeks, but we found out when I was supposed to be 10 weeks. After the miscarriage and D&C, I had a flare that lasted 4 months plus a 3-month waiting period before trying to conceive again.”
Maddie is thankful she was able to manage the flare with a course of budesonide. She did not need to switch maintenance medications.
“PCOS and uc are intertwined in this TTC journey, as PCOS unfortunately carries a higher miscarriage risk. Now that we know my body likely responds to loss and perhaps a full-term postpartum as well with a flare, it makes it much scarier of the risks of repeated losses and flares, and the worries of those make me worried about pregnancy-safe drug options, as well as the dangers of repeated/chronic inflammation on future health and cancer risks, and the worries of never being able to have a live birth or our ideal family size.”
Jenny: “Advocating for yourself is the first step towards healing, regardless of an individual’s situation. For years, I was told my Crohn’s disease and symptoms of PCOS were unrelated. It was a journey of perseverance towards confirming a diagnosis of PCOS and validation that the two are related. Trust your intuition, speak up, and never settle for answers that don’t feel right. Sometimes, the right doctors are the ones who truly listen—don’t be afraid to change your path until you find the care you deserve.
Jenny says it wasn’t until she had a female GI and a female gynecologist that she felt heard and understood. She says making that shift was pivotal in how she lived, improved her confidence, and her understanding of self-advocacy.
Final Thoughts
The relationship between IBD and PCOS is complex, but there are notable overlaps, especially in terms of chronic inflammation, immune system dysfunction, and metabolic disturbances. People with both conditions may face unique challenges, but understanding these shared pathways can help tailor treatments that address the root causes of inflammation and hormonal imbalances. Collaboration between healthcare providers across different specialties, such as gynecology, gastroenterology, and endocrinology, is essential to ensure comprehensive care for individuals managing both IBD and PCOS.
By recognizing these connections, we can better manage these conditions and improve the quality of life for those affected. While research appears to be limited regarding IBD and PCOS, there seemed to be a lot more discussion regarding Irritable Bowel Syndrome (IBS) and PCOS. I hope this article makes you feel seen, less alone, and empowered to discuss any health challenges that you may be experiencing but unsure of.
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