Eighteen years ago, when I was 24 years old, I gave myself my very first Humira injections following a hospitalization for an abscess the size of a tennis ball in my small intestine. The loading dose involved four painful injections, in my GI office. While much of my patient journey tends to be a blur, the day I started Humira is crystal clear in my memory. I remember how I was sitting, what it felt like, the emotions, the tears, the worry about starting a biologic medication, and the desperation to be well.
I don’t have any photos of the day I started on Humira, but this was the month after my loading dose, while still on 60 mg of prednisone.
At the time, I wasn’t thinking about anniversaries or milestones. I wasn’t wondering if I’d still be taking this medication nearly two decades later. I was simply hoping it would work. This week on Lights, Camera, Crohn’s I reflect on what I’ve learned and what I wish I knew all those years ago.
Would life ever be the same?
When you live with Crohn’s disease or ulcerative colitis, hope can sometimes feel like the most powerful prescription of all.
Back then, my disease had already taken so much from me. I had endured three years of on and off flares, hospitalizations, procedures, uncertainty, and the emotional weight that comes with wondering if you’ll ever feel like yourself again. I went from being a perfectly healthy person to being diagnosed with Crohn’s at age 21, put on 22 pills a day, and not knowing what the future would hold.
Humira didn’t cure my Crohn’s disease. There is still no cure, of course. But it gave me something I desperately needed: stability. Over the past 18 years, this injection has quietly stood beside me through nearly every major chapter of my adult life.
It helped me continue my career as a television journalist and keep my IBD private from the public, thanks to the medication being a self-injection. It was there as I found my voice as a patient advocate and launched Lights, Camera, Crohn’s. It was there when I fell in love, got married, and became a mom to three children. It’s been there through pregnancies, postpartum life, sleepless nights, school drop-offs, family vacations, soccer/baseball/basketball games, dance recitals, and countless ordinary moments that aren’t ordinary when you’re living with a chronic illness.
Because chronic illness has a way of making the ordinary feel extraordinary.
My youngest child was ironically born on the anniversary of when I started Humira (July 14th)!
Not all sunshine and rainbows
There have certainly been bumps along the way. People are often surprised to hear that I still had multiple bowel obstructions and hospitalizations prior to my bowel resection surgery in 2015, despite being on Humira. More recently, I experienced firsthand how disruptive a forced switch to a biosimilar in 2024 was before successfully appealing to return to Humira. And like anyone living with inflammatory bowel disease, I still have difficult days, anxious moments, unexpected symptoms, and reminders that remission doesn’t always mean life is symptom-free.
But through it all, Humira has remained the foundation of my treatment and a crutch in my life. I recognize how fortunate I am to still be on the same therapy all this time.
No two journeys look the same
One of the greatest lessons patient advocacy has taught me is that no two IBD journeys look alike.
I know many people who have cycled through medication after medication searching for relief. Reminder: The medications are failing you; you aren’t failing anything. Others have exhausted every available therapy, no fault of their own. Some are preparing to start clinical trials because approved treatments have stopped working. Many have endured multiple surgeries, ostomies, prolonged hospital stays, or years of uncontrolled inflammation despite doing everything right.
Their stories matter just as much as mine.
When I share that one medication has managed my disease for 18 years, I don’t do so to suggest this is typical or attainable for everyone. I share it because it represents what every person living with IBD deserves: a treatment that allows them to live life fully. When I started Humira 18 years ago, I had no idea if it would help control and manage my Crohn’s.
I never take that for granted. I don’t know if a year from now I’ll still be in the same boat or if this is a medication I will be on for the rest of my life. I’ve gotten to the point where it’s difficult to imagine life without it, which can feel a bit daunting.
Science changes lives
Every injection is a reminder that science changes lives.
Years ago, biologic medications transformed what was possible for people like me. Back in 2008, there were only two options for IBD patients (Remicade or Humira), now the landscape for treatment options is so vast. Before these therapies existed, many patients faced repeated surgeries, lengthy hospitalizations, and significantly fewer treatment options. Steroids were the go-to. Today, the landscape continues to evolve with new biologics, biosimilars, small molecules, and research that offers hope to the next generation of patients.
I’ve had a front-row seat to that evolution, not only as a patient but as an advocate and journalist interviewing physicians, researchers, and fellow patients around the world. I’ve learned that medicine isn’t just about controlling inflammation.
It’s about allowing someone to chase a career.
To become a parent.
To celebrate birthdays.
To travel.
To make memories.
To simply say yes to life more often than no.
Final thoughts
For me, Humira became more than a medication. It became a bridge between the life Crohn’s disease tried to take away and the life I was determined to build.
If you’re reading this and your current treatment isn’t working, please don’t lose hope.
I’ve met far too many people who found the right therapy after believing they’d run out of options. Research continues to move forward. New medications continue to emerge. Physicians are learning more every year about how to personalize treatment and truly target our disease. Your next chapter may look very different from the one you’re living in today.
And if you’ve found a treatment that works, whether it’s been six months, six years, or eighteen years, I hope you pause to appreciate what an incredible gift that is. Not because the journey is easy. But feeling well enough to live your life and discover a new normal is something worth celebrating.
Today, I’m incredibly grateful.
Grateful to the physicians who believed in biologic therapy long before it became commonplace. Grateful to researchers who dedicate their careers to continuing to advance IBD care. Grateful to my family for standing beside me through every injection and every flare. And grateful for a medication that has helped me experience so many beautiful moments I once feared Crohn’s disease would steal.
Eighteen years later, I’m still here. Still advocating. Still telling stories. Still raising my family. Still chasing dreams. Still injecting every other week.
And I am still profoundly thankful that this self-injection that I’ve given myself 480 times, has helped me live a life that has been so much bigger than my diagnosis.
Just when you start to trust your body again, inflammatory bowel disease (IBD) has a way of reminding you who’s in charge. Last week, my bloodwork was perfect. My inflammatory markers were normal. By every measurable standard, I was doing well. Remission was validated.
Then Thursday evening hit.
What followed was nearly three days of constant, debilitating abdominal pain that left me glued to the couch with a heating pad, exhausted, frustrated, and questioning everything I thought I knew about my disease. Each night I went to bed and woke up with the same pain. By Sunday morning, out of nowhere, the pain suddenly lifted. As I write this (Monday), I’m back to feeling like myself. Luckily, I had a Humira injection today!
If you’ve lived with Crohn’s disease or ulcerative colitis for any length of time, chances are you’ve experienced this type of whiplash. One day you’re making plans, feeling strong, and celebrating remission. The next, you’re wondering if a flare is brewing, if your medication has stopped working, or if you’re headed back down a road you’ve traveled before. And the hardest part? Sometimes there are no clear answers. This week on Lights, Camera, Crohn’s a look at the behind-the-scenes reality of life with IBD, even when you’re in remission.
When the Tests Say One Thing and Your Body Says Another
One of the most mentally exhausting aspects of IBD is that symptoms and objective disease activity don’t always line up and they often show up unannounced.
You can have:
Normal bloodwork
Normal fecal calprotectin
A recent clear colonoscopy
Therapeutic levels of your biologic
No evidence of active inflammation
And still experience significant symptoms. That’s not to say the pain isn’t real. It absolutely is. For some people, symptoms can stem from scar tissue, adhesions, visceral hypersensitivity, altered gut motility, stress, infections, dietary triggers, or other gastrointestinal conditions that coexist alongside IBD. Sometimes it’s a temporary viral illness. Sometimes it’s something that remains unexplained.
When I saw my GI today, he wasn’t overly concerned given my recent normal labs and the fact that the symptoms had resolved. The only change he made was moving my surveillance colonoscopy up a few months, from December to August/September, to provide some additional reassurance and make sure nothing is missed.
While I appreciated the precaution, I’ll admit part of me still wonders what caused all of this to happen. I’m left with something many IBD patients know all too well: uncertainty.
The Mental Toll Nobody Talks About
The physical pain was difficult. The mental spiral was challenging. When symptoms appear out of nowhere, it’s easy to immediately jump to worst-case scenarios:
“Is my medication failing?”
“Am I flaring?”
“Did I do something wrong?”
“What if I’m hospitalized this summer with all three kids out of school?”
“Is this the beginning of something bigger?”
Living with a chronic illness means carrying years, sometimes decades, of medical trauma and memories. Next month marks 21 years since my Crohn’s diagnosis, as a veteran patient, I consider myself to be well-versed on not only IBD, but how my symptoms speak to me and when I truly need to listen. Ironically, the month of July has historically been my “worst” month. I’ve had several hospitalizations during that month, so this time of year, I’m always a bit weary.
A bad pain day doesn’t just exist in the present moment. It can instantly transport you back to previous flares, hospitalizations, surgeries, or periods when your disease wasn’t controlled. For many of us, the fear isn’t about today’s symptoms. It’s about what those symptoms might mean tomorrow.
You’re Not Alone
If this experience sounds familiar, you’re in good company.
Many people living with IBD report episodes of abdominal pain or GI symptoms despite being in clinical or even endoscopic remission. In fact, symptom burden remains one of the biggest quality-of-life challenges in the IBD community. We often hear the word “remission” and imagine a finish line.
Since I reached surgical remission in August 2015 following bowel resection surgery (18 inches of my small intestine + appendix), I’ve come to realize the reality is much messier.
Remission doesn’t always mean symptom-free. It doesn’t mean every stomachache disappears or that you may not urgently have to run to the bathroom 5+ times a day. It doesn’t mean you’ll never have a bad day or week. And it certainly doesn’t mean your concerns aren’t valid. I think one of the most challenging parts of remission is that friends and family just think you’re 100% well all the time because the average person thinks remission is perfect, normal health, when in fact it’s not.
How to Navigate the Whiplash
When symptoms strike unexpectedly, here are a few strategies that can help:
Don’t Panic on Day One. Easier said than done, I know.But not every symptom equals flare. Give yourself permission to gather information before jumping to conclusions. I typically allow 2-3 days of symptoms before I reach out to my GI team over the patient Portal.
Reach Out to Your Care Team. Even if symptoms resolve, it’s worth documenting what happened and notifying your GI. Patterns matter. Taking notes whether handwritten or on your phone/computer will help you keep track of the good days vs. the rough days. Oftentimes when we’re in clinic, we tend to gloss over the hard times not because we’re being evasive purposefully, but because our normal isn’t normal, but it becomes our normal. You get what I’m dropping.
Focus on Trends, Not Moments. A few rough days may be less concerning than symptoms that steadily worsen over weeks.
Ask yourself:
Is this getting better, worse, or staying the same?
Are symptoms recurring?
Am I seeing new symptoms?
Trust Your Experience. Normal labs are reassuring, but they don’t invalidate your symptoms.You know your body.You don’t need abnormal test results to justify seeking support.
Keep a Symptom Journal. Documenting pain levels, diet, stress, sleep, and bowel habits can sometimes reveal patterns that aren’t obvious in the moment.
Consider Seeking Help from a GI Psychologist. My GI brought this option up to me in clinic today. Even though we may feel like we have a good handle on it all, living with IBD can be heavier than we realize and managing our anxiety and coping mechanisms with a professional can help us take life on more effortlessly. There are many amazing psychologists who specialize in IBD, many with virtual visits available right at our fingertips.
Remember That Remission Isn’t Fragile. One bad weekend doesn’t erase months or years of progress.This is something I’m reminding myself of right now.
Moving Forward
IBD has taught me many lessons over the past two decades, but one of the hardest is learning to live in the gray area. Not every symptom has an immediate explanation. Not every setback becomes a flare.
And sometimes the most difficult part of this disease isn’t the inflammation itself, it’s the uncertainty. This past weekend was a reminder that even in remission, Crohn’s disease can still mess with your head. But it was also a reminder that symptoms can pass. That normal labs still matter. That one difficult chapter doesn’t automatically predict the rest of the story.
If you’ve ever experienced the whiplash of feeling healthy one day and terrified the next, know this: You’re not overreacting. You’re not imagining it. And you’re certainly not alone.
As temperatures rise, so can the challenges of living with Crohn’s disease and ulcerative colitis. For people with inflammatory bowel disease (IBD), summer heat (and heat in general) isn’t just uncomfortable, it can amplify symptoms, increase dehydration risk, worsen fatigue, and make everyday activities feel far more difficult.
And while everyone is told to “drink more water” during the summer, hydration with IBD is often much more complicated than that. Living in St. Louis, I’m no stranger to extreme heat and humidity!
Between diarrhea, ostomies, inflammation, medication side effects, and nutrient absorption issues, those of us with IBD are already operating at a hydration deficit before stepping outside into 90-degree-plus weather. This week on Lights, Camera, Crohn’s a look at what patients need to know about staying safe, hydrated, and feeling their best during the hottest months of the year.
Why People With IBD Are More Vulnerable to Dehydration
Dehydration happens when your body loses more fluids than it takes in. While that can happen to anyone in the heat, people with IBD face unique risks.
Some of the biggest contributors include:
Frequent diarrhea
Active inflammation
Vomiting
Excessive sweating
Reduced appetite
Short bowel syndrome
Ileostomies or J-pouches
Certain medications
Avoiding fluids due to bathroom anxiety
For patients with Crohn’s disease affecting the small intestine, the body may also struggle to absorb fluids and electrolytes efficiently. Meanwhile, people living with an ostomy can lose significant amounts of sodium and fluids throughout the day, especially in extreme heat. The result? We can become dehydrated faster than we realize.
Signs of Dehydration Can Look Different in IBD
Many symptoms of dehydration overlap with symptoms those with IBD already experience regularly, which can make it harder to recognize when something is wrong.
Common warning signs include:
Dizziness or lightheadedness
Fatigue or weakness
Headaches
Muscle cramps
Dry mouth
Rapid heartbeat
Brain fog
Dark urine
Nausea
Increased GI symptoms
For some, dehydration can trigger a vicious cycle: diarrhea leads to fluid loss, dehydration worsens fatigue and weakness, and patients feel too sick to adequately rehydrate.
Why Water Alone May Not Be Enough
One of the biggest misconceptions about hydration is that drinking plain water is always sufficient.
In reality, many IBD patients lose electrolytes (especially sodium and potassium) along with fluids. Drinking large amounts of water without replacing electrolytes can sometimes leave us feeling even worse.
Electrolytes help the body:
regulate fluid balance
support muscle function
maintain blood pressure
keep nerves functioning properly
That’s why your gastroenterologist may recommend oral rehydration solutions or electrolyte drinks during flares, illness, travel, heat exposure, or high-output ostomy periods.
Be mindful that some sports drinks contain large amounts of sugar or artificial sweeteners that can aggravate symptoms. I’ve personally had luck with DripDrop and Liquid IV.
Summer Activities Can Add Another Layer of Stress
Summer doesn’t just bring heat; it brings logistical anxiety. Long car rides and flights for fun travel. Outdoor festivals. Pool days. Sporting events. Theme parks. Beach vacations. Going to parks with the kids that don’t have bathrooms. The list goes on and on. I know I feel extremely anxious every time I get on my in-law’s boat and just pray, I don’t run into any bathroom issues!
We often become hyper-aware of where bathrooms are located, whether they’ll have access to safe foods, and how quickly heat exhaustion could escalate symptoms. And unlike others, people with chronic illness often can’t simply “push through” dehydration or fatigue.
Medications Can Complicate Heat Tolerance
Certain medications commonly used in IBD management may affect how patients tolerate heat. Steroids can increase sweating and cause fluid shifts within your body, some medications can cause nausea (Zofran to the rescue!), and fatigue from chronic inflammation can worsen when temperatures rise (especially if you’re anemic)!
Tips for Staying Hydrated With IBD This Summer
While every patient is different, experts often recommend:
Hydrating Before You Feel Thirsty. Thirst can be a late sign of dehydration. Consistent hydration throughout the day is key. I make a point of making a water bottle for myself before I even have breakfast or my coffee each morning. As an IBD mom, we can get so busy taking care of everyone else that we can put eating and drinking on the backburner for ourselves.
Focus on Electrolytes During High-Risk Situations
Especially:
outdoor events
travel days
exercise
active flares
ostomy output increases
stomach illnesses
Carry “Safe” Hydration Options: Many people find certain drinks are easier to tolerate than others. Trial and error matters. What may help someone else, may not sit well with you.
Eat Hydrating Foods: Foods like watermelon, lettuce, celery, zucchini, bell peppers, cucumbers, broth-based soups, smoothies, and fruits can contribute to fluid intake. If you’re currently flaring or have active stricturing disease, talk with a registered dietitian about how to navigate this (ex. Cooking the veggies so they’re tender or chewing to applesauce consistency).
Be Careful with Alcohol and Excess Caffeine: Both can worsen dehydration for some people.
Watch for Heat Exhaustion: If symptoms escalate to severe dizziness, fainting, confusion, rapid heartbeat, or inability to keep fluids down, medical attention may be necessary. Be vigilant and proactive as best you can.
The Emotional Side of Summer With Chronic Illness
There’s also a mental load that comes with navigating summer while living with IBD.
Many of us want to participate fully in vacations, outings, and family activities, but may quietly spend the entire day navigating bathroom access, our energy levels, finding safe foods, and staying on medication schedules. That invisible planning can be exhausting.
And for parents with IBD, summer can feel even more physically demanding. I’m gearing up for that with my three kids! The combination of heat, disrupted routines, increased outdoor activities, and caring for children often leaves little room for rest and recovery. Now that my kids are 9, 7, and almost 5, I know that everyday doesn’t need to be an adventure and that low-key days at home can be just as fun for everyone, too. There’s all this hype about bringing back the 90’s summer. Listen to your body and if it means staying home and having the kids ride their bikes, run through the sprinkler, and have popsicles versus going to parks, pools, and amusement parks—that’s ok. Give yourself grace, your body will thank you!
The Bottom Line
Hydration isn’t just a wellness trend for people with IBD, it’s a critical part of symptom management and overall health and something to discuss with your care team.
As summer temperatures climb, patients may need to be more proactive about fluids, electrolytes, rest, and recognizing the early signs of dehydration. As always, listen to how your body speaks to you through symptoms and do your best to address those needs before they become an acute issue.
Because while summer is often portrayed as carefree, many people living with Crohn’s disease and ulcerative colitis are dealing with an entirely different reality behind the scenes: one that requires constant awareness, preparation, and self-advocacy just to feel well enough to participate.
Finding out you’re pregnant can be one of the most profound moments of one’s life; and, if you’re living with Crohn’s disease or ulcerative colitis, that moment is almost immediately followed by a flood of questions that others don’t have to think about. Will my IBD flare? Is my medication safe? What does this mean for my pregnancy? Can I even do this?
The answer to that last question is yes, absolutely, yes. But it takes a team, a plan, and attention to more than just your GI symptoms. As an IBD mom of three, I’ve been in your shoes and know how it feels to bring a life into this world with so many unknowns.
This week on Lights, Camera, Crohn’s we hear from Licensed Clinical Psychologist, Dr. Antonia Repollet, who specializes in gut-brain health at GI Psychology. Dr. Repollet is a fellow Crohnie and a mother. She works with people navigating exactly this intersection every day. She shares what she wants every person with Inflammatory Bowel Disease (IBD) to know about pregnancy: the medical side, the emotional side, and the parts that often get left out of the conversation entirely.
Your Gut Is Already Under Pressure
Pregnancy is a full-body experience. Hormonal shifts in progesterone, estrogen, and cortisol affect mood and energy, and they directly shape how the gut functions. Progesterone relaxes smooth muscle, slowing the movement of food through the digestive tract (Alqudah et al., 2022). Estrogen influences gut permeability and the composition of the gut microbiome (Chen et al., 2025). Cortisol, the body’s primary stress hormone, can heighten GI sensitivity and drive inflammation (Cherpak, 2019). Together, these hormonal changes can increase bloating, reflux, and constipation even in people without IBD. Add a growing uterus physically displacing digestive organs, and it’s no wonder the gut feels unsettled!
Whether you’re a first-time mom-to-be or someone who has had several children, we know how complicated it can feel to navigate these changes in your body on top of IBD. It’s not unusual to feel a bit overwhelmed.
“For someone with Crohn’s or ulcerative colitis, these changes land on an already-sensitive system, and the hormonal picture matters more than people often realize. Hormones are among the key messengers of the gut-brain axis, the two-way communication highway between the digestive tract and the nervous system,” explain Dr. Repollet. “During pregnancy, when hormone levels are shifting, this axis is working overtime, and stress often amplifies this further. For example, anxiety about your health, your pregnancy, your body, your medications: all of it feeds back into the gut through hormonal and neurological pathways, and the gut sends it right back to the brain. Thus, pregnancy can disrupt this loop.”
Why Remission Before Conception Matters
Here’s something important: research consistently shows that the best predictor of IBD staying stable during pregnancy is whether disease was well-controlled at the time of conception (Abhyankar, 2013). Studies have found that approximately 66% of IBD patients who conceive during active disease experience continuing or worsening symptoms throughout pregnancy (Hashash & Kane, 2015).
Dr. Repollet says, “Remission going in doesn’t guarantee smooth sailing, but it does dramatically improve the odds for both the pregnant person and the developing fetus.”
Looking back, I’m grateful for the timing of my bowel resection surgery when I was engaged, because it put me into surgical remission, and helped prep my body for pregnancy after I got married. Prior to surgery, I had never heard the word “remission” from my gastroenterologist. With IBD pregnancies, this is where the “rule of thirds” comes in. One third of women experience an improvement of IBD symptoms, one third stay the same, and one third see an uptick.
Active disease during pregnancy is associated with increased risks of miscarriage, preterm birth, low birth weight, and other complications (Boyd et al., 2015). This is why the conversation with your gastroenterologist needs to happen before you start trying to conceive, not after a positive pregnancy test.
The Medication Questions
Please don’t stop without talking to your doctors!
“One of the most common things I hear from IBD patients considering pregnancy is some version of: “I thought I should stop my medication just to be safe.” The instinct makes complete sense, because you want to protect your pregnancy. But stopping IBD medication without medical guidance can put you and your fetus at greater risk by triggering a flare,” Dr. Repollet advises.
Many IBD medications, including biologics like infliximab, adalimumab, and certolizumab, are considered safe during pregnancy and are recommended to maintain remission (Mahadevan et al., 2019; Peifer, 2024). Some, like methotrexate, do need to be stopped well before conception, and this applies regardless of which reproductive organs you have (Peifer, 2024). This is important for both partners, as medication safety around conception is a conversation for anyone planning to conceive, regardless of gender. Your GI and obstetrician (OB) should be making these decisions together, with your input.
Build Your Team Before You Need Them
A whole-person approach to pregnancy with IBD means your care team should include more than just your GI and OB. Depending on your history, you may also benefit from a maternal-fetal medicine specialist (an OB with advanced training in high-risk pregnancies), a dietitian who understands IBD and prenatal nutrition, a lactation consultant familiar with chronic illness, and a mental health provider who specializes in the gut-brain connection. According to findings from the Global Consensus on IBD and Pregnancy, all IBD pregnancies are deemed “high risk.”
Dr. Repollet tells me the last one matters more than people realize.
The Part That Doesn’t Get Talked About Enough: Your Mental Health
People with IBD are two to three times more likely to experience anxiety and depression than people without (Neuendorf et al., 2016). Rates of anxiety in IBD hover around 32%, and depression around 25% (Barberio et al., 2021). These numbers don’t go down during pregnancy. If anything, the uncertainty, the body changes, the fear of flares, and the weight of managing a chronic illness while growing a new life can make them go up.
“And here’s what’s easy to overlook: your emotional state is not separate from your physical symptoms. Stress releases hormones that increase inflammation. Anxiety heightens gut sensitivity. When you’re scared that every cramp might be a flare, that fear itself can worsen symptoms. The mind and the gut are in constant conversation,” says Dr. Repollet.
This is why mental health support isn’t a “nice to have” treatment during pregnancy with IBD and should be part of the medical plan.
Evidence-based approaches like Cognitive Behavioral Therapy (CBT) for GI conditions (CBT for GI) (Gracie et al., 2017) and gut-directed hypnotherapy (Keefer et al., 2013) have been shown to reduce GI symptoms, lower flare frequency, and improve quality of life in IBD patients. These approaches are safe during pregnancy, non-pharmacological, and can be genuinely life-changing for anyone who feels like they’re white-knuckling through their pregnancy.
A Story That Might Sound Familiar
“One of my patients (I’ll call her “Alex”) was 12 weeks pregnant and living with Crohn’s. Inflammation was well-controlled, but daily abdominal cramping and pain, diarrhea, and racing thoughts about whether symptoms were affecting the pregnancy had taken over. The response from providers (e.g., “It’s just pregnancy hormones.”) left Alex feeling dismissed and alone.”
With gut-brain therapy, Alex learned to track symptom patterns, practice diaphragmatic breathing, and use clinical hypnosis to interrupt the anticipatory anxiety that was amplifying physical symptoms.
Dr. Repollet says, “Over eight weeks, symptoms decreased, sleep improved, and (maybe most importantly) there was a renewed trust in the body’s signals. Feeling prepared going into delivery and postpartum was something Alex hadn’t expected to feel, but did. This is a reminder that emotional care is physical care. They are not separate things.”
What to Watch For and When to Reach Out
Consider seeking mental health support if you are:
Struggling to eat or sleep due to GI symptoms or anxiety
Experiencing GI symptoms that feel emotionally overwhelming, are hard to separate from anxiety, or seem to worsen with stress
Experiencing distress (whether related to your IBD, your pregnancy, or both) that is interfering with daily life
Having fears about flares, delivery, or being a high-risk patient that feel consuming
Dealing with resurfacing trauma from prior pregnancy loss, difficult medical experiences, or a complicated diagnosis journey
Simply wanting a space to process this enormous thing you are navigating
Please know that you don’t have to be in crisis to deserve support.
The Postpartum Chapter
Pregnancy often gets most of the attention, but postpartum is its own significant transition for people with IBD.
“Hormonal shifts after delivery, sleep disruption, feeding decisions in the context of your medication regimen, and the emotional adjustment to new parenthood can all influence disease activity. Having a plan for the postpartum period, including who on your care team you’ll check in with and how, should be part of a complete prenatal plan,” explains Dr. Repollet.
I remember during all my pregnancies how fearful I was about how I would feel after delivery. By staying on my medication (Humira), it helped keep symptoms at bay not only during my pregnancies, but also after my scheduled c-sections. I required a short burst of steroids after my second child was born, but luckily never experienced a full-blown flare.
It can be easy to place all your focus on your baby but be mindful of how your body is speaking to you through symptoms so you can communicate this directly to your care team, before you’re dealing with an acute flare. Trust that by sharing what you’re going through you’re doing what is not only best for yourself, but what’s best for your family.
You Deserve Coordinated, Whole-Person Care
Pregnancy with Crohn’s or ulcerative colitis is possible. Many people do it every year with the right support, effective communication between providers, and attention to both the physical and emotional layers of what they are carrying.
“At GI Psychology, we specialize in helping people with IBD and other GI conditions navigate exactly these kinds of life transitions. Our clinicians are trained in gut-brain therapies including CBT-GI and gut-directed hypnotherapy, and we work via telehealth across all 50 states + Washington D.C., so support is accessible wherever you are. We also offer an 8-week virtual IBD Psychotherapy Group for adults living with Crohn’s and ulcerative colitis, designed to provide evidence-based tools alongside community with people who truly get it,” says Dr. Repollet.
If you’re planning for pregnancy, currently pregnant, or navigating the postpartum period with IBD, you don’t have to figure it out alone.
Enroll in our IBD Psychotherapy Group, in partnership with the Crohn’s and Colitis Foundation and the American College of Gastroenterology: https://www.gipsychology.com/ibdgroup/
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Mahadevan, U., Robinson, C., Bernasko, N., Boland, B., Chambers, C., Dubinsky, M., … & Kane, S. (2019). Inflammatory bowel disease in pregnancy clinical care pathway: A report from the American Gastroenterological Association IBD Parenthood Project Working Group. Gastroenterology, 156(5), 1508–1524.
Neuendorf, R., Harding, A., Stello, N., Hanes, D., & Wahbeh, H. (2016). Depression and anxiety in patients with Inflammatory Bowel Disease: A systematic review. Journal of Psychosomatic Research, 87, 70–80.
For many women, living with chronic illness means constantly decoding what our bodies are trying to say. When you have inflammatory bowel disease (IBD), whether Crohn’s disease or ulcerative colitis, you get used to tracking symptoms, identifying triggers, and advocating for yourself.
But what happens when something doesn’t quite fit the IBD pattern and the usual narrative?
For a significant number of women, the answer may be endometriosis, a condition that often overlaps with IBD in ways that can delay diagnosis, complicate treatment, and intensify daily life. This week on Lights, Camera, Crohn’s we break down the possible connection, what to watch for, and how to advocate for the care you deserve. I don’t personally have endometriosis with my Crohn’s, so you’ll hear from 10 women who live this reality as they transparently share what it’s like for them and what they’ve learned along the way.
What Is Endometriosis?
Endometriosis occurs when tissue similar to the lining of the uterus grows outside the uterus. This can happen on the ovaries, fallopian tubes, bowel, bladder, and other pelvic structures. This tissue still responds to hormonal cycles, which can lead to:
Inflammation
Pain
Scar tissue (adhesions)
Organ involvement (including the intestines)
I ran a poll in my Instagram Stories asking about IBD and endometriosis. Of the 85 votes, 27% of women said they have both, 31% said they think they may have both, and 42% said they don’t have both. Those numbers speak volumes.
What the Stages of Endometriosis mean
Endometriosis isn’t staged the same way cancers are, it’s not about how dangerous it is, but about how much disease is seen during surgery. The most used system is from the American Society for Reproductive Medicine, which divides endo into four stages based on location, depth, size of implants, and scar tissue (adhesions).
Here’s what each stage means:
Stage I — Minimal
Small, superficial patches of endometrial-like tissue
Little to no scar tissue
Often found on the ovaries or pelvic lining
What it feels like: Symptoms can be mild… or surprisingly intense. Some people with Stage I still have significant pain.
Stage II — Mild
More lesions than Stage I
Some may be deeper (not just surface-level)
Minimal adhesions may start forming
What it feels like: Pelvic pain, painful periods, sometimes pain with ovulation. Still very variable.
Stage III — Moderate
Many lesions, including deep implants
Presence of adhesions (organs may start sticking together)
Small cysts on ovaries called endometriomas may appear
What it feels like: More consistent pelvic pain, possible pain with sex, bowel symptoms depending on location.
Stage IV — Severe
Extensive deep lesions
Thick adhesions (organs can be significantly stuck together)
Larger ovarian endometriomas (“chocolate cysts”)
May involve bowel, bladder, or other organs
What it feels like: Chronic, often severe pain; higher likelihood of fertility challenges; symptoms tied to whichever organs are affected.
The most important thing to understand
Stage does NOT equal pain level. Someone with Stage I can be debilitated, while someone with Stage IV might have fewer symptoms. That’s one of the most frustrating parts of endo, it doesn’t behave predictably. That being said, just because you may have Stage 1 should not diminish your experience as a patient or the suffering you are coping with.
Why Endometriosis and IBD Get Confused
The overlap between endometriosis and IBD is more than coincidental, it’s believed to be symptomatically and biologically intertwined.
Both conditions can cause:
Abdominal pain and cramping
Diarrhea or constipation
Bloating
Fatigue
Nausea
Pain with bowel movements
If you already have IBD, it’s easy to assume these symptoms are just part of a flare.
Hormonal Influence
Endometriosis is hormone-driven, meaning symptoms often worsen:
Before or during your period
Around ovulation
Some women with IBD also report symptom fluctuations tied to their menstrual cycle, which can blur the lines even further.
If you’re living with IBD, here are signs that something else, like endometriosis, could be at play:
Pain that follows your cycle (gets worse before/during your period)
Severe pelvic pain that feels different from your typical IBD pain
Pain during or after sex
Pain with bowel movements specifically during your period
Infertility or difficulty conceiving
IBD treatments aren’t improving certain symptoms
One of the biggest clues? When your gut symptoms don’t fully respond to your usual IBD medications.
The Diagnostic Challenge
Diagnosing endometriosis isn’t straightforward.
Imaging (like ultrasound or MRI) can help, but may miss smaller lesions
The gold standard is laparoscopic surgery, where a specialist can see and biopsy the tissue
For women with IBD, this can feel overwhelming, especially if you’ve already been through scopes, scans, surgeries, and procedures. But getting clarity matters.
How It’s Treated
Treatment depends on severity, symptoms, and your goals (like pain relief vs. fertility).
Hormonal Therapy
Birth control pills, patches, or IUDs
Medications that suppress estrogen
These aim to reduce or stop the growth of endometrial tissue.
Pain Management
NSAIDs (with caution in IBD, especially Crohn’s)
Other pain-modulating medications
Surgical Treatment
Laparoscopic excision of endometriosis lesions
Particularly helpful for more advanced disease
Coordinated Care
If you have both IBD and endometriosis, your care team may include:
A gastroenterologist
A gynecologist (ideally one who specializes in endometriosis)
A colorectal surgeon if bowel involvement exists
This team-based approach can make a huge difference.
Living With Both: Practical Advice
Track Your Symptoms Differently
Don’t just track food and bowel habits. Be mindful of:
Your menstrual cycle
Pain timing and location
Symptom patterns across the month
Patterns can reveal what labs and scans can’t.
Don’t Dismiss “New” Pain
You know your IBD. If something feels different, it probably is. Trust that instinct.
Be Specific With Your Doctors
Instead of saying “I have more pain,” try:
“This pain is worse during my period.”
“It feels lower in my pelvis than my usual Crohn’s pain.”
“My GI symptoms spike even when my inflammation markers are normal.”
Details help providers connect the dots faster.
Be Careful With Medications
Some common treatments for one condition may complicate the other:
NSAIDs can aggravate IBD
Hormonal treatments may affect GI symptoms differently for each person
Always loop in both your GI and GYN teams.
Advocate for a Second Opinion
Endometriosis is often underdiagnosed and misunderstood. If you feel dismissed, it’s reasonable to seek a specialist, especially one experienced in excision surgery, not just symptom management.
The Emotional Side No One Talks About
Living with one chronic illness is hard enough. Adding another, especially one that affects fertility, hormones, and daily pain, can feel overwhelming.
There’s often:
Frustration from delayed diagnosis
Anxiety about symptoms overlapping
Exhaustion from managing multiple specialists
If this is your reality, you’re not alone and you’re not imagining it.
The Patient Experience: What women with IBD and endometriosis want you to know
Madison: “I could write a novel about endometriosis and IBD! I’ve had three surgeries for endometriosis, and it’s been found on my bowel in two of the surgeries. I eventually asked my GI if it could have been endo all along (it’s not), but it’s interconnected.
She was diagnosed with ulcerative colitis in 2016 but had symptoms for a few years prior. Madison was diagnosed with endometriosis in August 2020 after unexplained infertility but more importantly, debilitating pain once she stopped birth control in early 2019. Looking back, she says her symptoms probably started at puberty (12 years old) but she didn’t know what was normal.
“I had surgery in August 2020 to confirm the endometriosis diagnosis and have had 2 additional surgeries since then. I wish I would have known during my first surgery that there’s a difference between an ablation of the endometriosis and an excision of the endometriosis,” she explains. “The best way I’ve had it explained to me is imagine burning weeds in your yard vs pulling them out by the root — if you burn the weeds, they will come back. You need to pull them out by the root. However, not every surgeon is trained in excision and the recovery is definitely longer! I looked into endometriosis advocacy groups like Nancy’s Nook (Facebook) to help learn more about the differences and find excellent surgeons.”
Madison ended up having a hysterectomy in 2023 after they suspected adenomyosis (where endometrial tissue grows within the muscle of the uterus) and the quality of life she has now is significantly improved! She still has endometriosis (there’s no cure and it often regrows) but it’s managed much better now.
“I will probably have a fourth surgery in the next couple years, but I’m hopeful that the medicine and science improves to possibly delay an additional surgery. My endometriosis and my ulcerative colitis symptoms are definitely linked. If I’m in a flare for one, I tend to have symptoms increase for the other. For example, my endometriosis causes really painful bloating and I often look distended. If the distension lasts for a few days, my gut tends to revolt and I start to see an increase in GI symptoms. The last 2 surgeries showed I had endometriosis growing on the bowels (both times it was removed) so my cycles would cause really painful GI symptoms that improved after the surgeries.”
She is more convinced now that the gut/brain/pain feedback loop is real. When Madison’s endo is calm, her ulcerative colitis tends to follow suit. She’s so grateful for Instagram which has connected her to other endometriosis patients that have been willing to share their experiences.
Katherine: “Just saw an endo excision specialist 2 months ago. She wants me to do the surgery, but I’m in my second flare right now in the last year and my IBD specialist won’t sign off on it until I’m in endoscopic remission. Now dealing with fighting CVS in an appeal to increase my Rinvoq back to 45 mg.”
Katherine went on to say that one of the most vital steps in her journey was realizing that her body doesn’t operate in silos, so her doctors shouldn’t either.
“Navigating the overlapping pain of ulcerative colitis and endometriosis requires more than just two separate plans; it requires a unified front. I found that getting my IBD specialist deeply involved in my pelvic health was the catalyst for better care, especially since I noticed my symptoms would constantly peak during my cycle, creating a ‘perfect storm’ for inflammation.”
She says her GI understands the specific complexities of her UC and was able to refer her to an endometriosis specialist who wasn’t just an expert in surgery, but someone who respected the delicacy of the bowel.
“When your GI and endo specialist collaborate, you move away from ‘band-aid solutions’ and toward a strategy that addresses how these conditions trigger one another. Don’t be afraid to ask your gastroenterologist for a referral; a specialist who is already vetted by your IBD team ensures that your care plan is safe, cohesive, and designed for your specific anatomy.”
Katherine is currently in her second UC flare in six months after being in remission for five years. The plan is to start progesterone only birth control once she’s back in remission. Then she plans to get endometriosis excision surgery, and an IUD, which will help with her iron deficiency anemia.
Sabrina: “My doctors have suspected I have endometriosis, but I haven’t done the diagnostic surgery yet because I need to wait until I have my surgery to reconnect my J Pouch.”
Kelly wasdiagnosed with endometriosis stage 4 but most likely had it for years. Then, she received her Crohn’s disease diagnosis in 2005.
“We did several rounds of IVF mainly because back then it wasn’t talked about or taken seriously. I never would have done IVF because my Crohn’s got so bad. We adopted in 2009. I had my colon out in 2010. Then in 2016, I was thinking of a hysterectomy because I was so done with the anemia and pain. I ended up with a small bowel blockage due to my endometriosis and end up (I had a J Pouch—I now have an ileostomy) having an emergency hysterectomy and a 10-hour surgery to unglue all my organs and get rid of the scar tissue on my bowels and the damage from the endo.”
Kim: “I was diagnosed with Endometriosis first, then Crohn’s, then repeat scopes showed endometriosis on my colon as well. I’ve never been told there is a correlation, but it makes total sense (how women’s bodies store trauma and have far more autoimmune conditions as a result). I wish I would’ve known to advocate for myself and my symptoms as a teenager and young adult.”
Kim says too many times (especially for women) we are told it’s “normal” to have symptoms (cramps, excessive bleeding, fatigue, anemia, etc.) and as a young adult, you don’t know to challenge it.
“Even at 30 years old, my PCP was convinced my rectal bleeding was simply from hemorrhoids and only referred me to GI when I insisted. Then, that GI only performed a colonoscopy because of the referral from PCP as “IBD patients typically present much more ill” than me. We then discovered severe, chronic ulceration and full-blown Crohn’s.”
Kristin: “I was diagnosed with stage 4 endo during a hysterectomy in 2024 after years of terrible symptoms that kept me bedridden during my cycle. However, not all my symptoms were relieved from the surgery. About 15 months later (just last month), I was diagnosed with Crohn’s disease and started on biologics. For years, I was told I had a sensitive stomach, or I should take birth control. I wish I knew what endo was years ago. I also wish I knew how much more likely women with endo are for having an autoimmune disease.
Kristen wants women to know that how you describe your symptoms to doctors is just as important as what you tell them. This will directly impact testing and help in finding a diagnosis. It wasn’t until she told her GI that her symptoms were cyclical but seemed to have no rhythm or reason that the testing approach shifted. Kristen wants women to have the courage to speak up about all your symptoms, even if they seem gross or uncomfortable to talk about.
Allie: “I just wish when I was diagnosed with UC that someone would have told me the likelihood of potentially having endo and then the impact it could have on fertility. I would have gone to a fertility specialist early on and potentially frozen my eggs in early adulthood.
Kate: “I was diagnosed with Crohn’s first 25+ years ago. Then endometriosis 23+ years ago. I have stage 4 endo, meaning it was most recently found fusing my vagina and rectum together. I have had a total hysterectomy, multiple surgeries to remove endometrial tissue throughout my pelvis, and both of my ovaries are now gone. This was discovered after YEARS of constipation (weird for me) and NOTHING worked to resolve it.
Kate is on opioids for chronic pain and her doctors kept telling her the pain medication was the culprit for the constipation, but the reversal medications did nothing. She was hospitalized for nine days for pain and constipation, during which they tried everything. The only fix was to slowly drink colonoscopy prep while getting IV pain meds for the pain it caused.
“I kept asking if it could be a structural or a motility problem, and they kept saying it was the opioids. Colonoscopies have shown my Crohn’s is and has been in remission for years (thanks to Azathioprine!) After the surgery, where they discovered the actual issue (that it was structural), I’ve had zero constipation issues and have been able to finally start coming out of the depression. We are now looking to find a GI doctor who has a better understanding of endometriosis and Crohn’s.”
Kate says the inflammatory process of both diseases mimic each other, and there is no reason to suffer in pain, nor should patients be told they cannot address their pain using the entire toolkit, including opioids, if they allow the patient to become more functional and lead a more fulfilling life.
“Doctors need better education on how systemic both diseases are, and that if Crohn’s symptoms aren’t responding to treatment, they should be worked up for endo. There also needs to be a better understanding that both diseases can be worse than having cancer, as there are no clear protocols, there is little understanding or support, there is little research, and the idea there could be something worse than cancer doesn’t register with most of the general public.”
Lenette: “I found out I had endometriosis when I had a partial hysterectomy to correct iron deficiency anemia. At first, the pain and symptoms all blurred together. It’s taken time for me to be able to distinguish between the two, but sometimes, I’m still unsure what is what. Tracking symptoms helped me distinguish better because I found some symptoms to be cyclical. However, IBD can worsen around your cycle as well and hormones can affect both conditions.”
Lynette recommends women be extremely specific with doctors about their pain. So many symptoms overlap, and she says it can feel two times as bad: bloating, fatigue, mood, etc. All of this can cause pelvic floor tension, and pelvic floor therapy can be life changing.
“It’s also helpful to find community that have both conditions where you can find someone to talk to or learn more about having both. I have found it to be so frustrating to have both because I seem to experience symptoms so much more dramatically than others do at times. Having two conditions that affect the same area and both cause pain and bloating has been so challenging. What helps one condition might not help the other so it can be very trial and error. It has given me a new sense of awareness of my pain and fatigue since I am constantly monitoring to understand which is occurring or if both are the culprit at that time. It’s so frustrating that my IBD is in remission, yet I still experience a lot of symptoms due to my endometriosis.”
She says it can feel like you rarely get a break from pain.
“I try to listen to my body when I’m experiencing a lot of symptoms. I do a lot of deep breathing, stretching, and walking. I also try to listen to my body regarding food. I try to eat nourishing things but also if I’m craving something, I usually eat what I’m craving. If it increases symptoms, I make a note of that. Sometimes my body is OK with certain foods and sometimes it isn’t. I also try to manage stress levels a lot when I’m experiencing symptoms.”
Jessie: “I was diagnosed with Endo and Crohn’s right around the same time at the age of 15. I think my Endo symptoms showed up at first, but they were all diagnosed at once. At the time, the doctors shared no information on any correlation and treated it like two separate issues. As I aged and both progressed, I still struggled to get any acknowledgement from doctors on the two being related; however, once I was diagnosed stage IV Endo and had my last excision + partial hysterectomy, that surgeon said he could see how my condition could be affecting my Crohn’s in the lower colon and perianal area. I had some endo down by the rectum that they removed and there was just a lot of inflammation.”
Jessie says her inflamed uterus (which was adenomyosis) also may have been contributing to overall inflammation in that area as well. She chose to have an excision and partial hysterectomy before her ostomy was reversed, and her perianal symptoms improved so much by not having a period anymore.
“Every time I would get a period, I would experience pain, inflammation, diarrhea, increased urgency, and pressure around that rectal area and my lower abdomen. While I still have my ovaries, not having a period itself every month almost eliminated all those Crohn’s symptoms that would rage around my cycle.”
The Bottom Line
The truth is, not all pain in women with IBD is “just IBD” and continuing to accept that narrative is where too many stories get stuck. Endometriosis is often hiding in plain sight, especially in bodies already labeled as “complicated.” But your body is not confusing, you’re just being asked to connect dots that the healthcare system doesn’t always put together for you.
So, if something feels off, if your symptoms don’t follow the rules, if your pain keeps showing up despite doing “everything right,” do not ignore it. Track it. Name it. Bring it to your care team repeatedly until someone listens.
Because you deserve care that looks at the whole picture. You deserve doctors who are curious, not dismissive. And most of all, you deserve answers, not assumptions. This isn’t about choosing between diagnoses. It’s about recognizing that sometimes, it’s both, and finally getting the care that reflects that reality.
When most people hear about inflammatory bowel disease (IBD), they think about symptoms—abdominal pain, urgency, fatigue, flares. What they don’t think about? The financial toll.
Living with IBD, whether it’s Crohn’s disease or ulcerative colitis, comes with a lengthy list of out-of-pocket costs that rarely get discussed at diagnosis.
IBD patients experience 3 times higher healthcare-related work loss than non-IBD peers. And for many patients and families, those costs become a constant, underlying stressor that shapes daily decisions.
This week on Lights, Camera, Crohn’s a deep dive into the cost of living with IBD and why you’re not alone if financing your health is a constant concern.
Medications (Even When You’re Insured)
Biologics, immunosuppressants, steroids, you name it… IBD medications are often life-changing, but they’re also expensive. Before insurance comes into play it’s shocking when you hear how costly these medications are without coverage:
Prior authorization delays that interrupt treatment
And sometimes, the biggest cost isn’t financial, it’s physical and emotional when we’re forced to switch medications due to insurance, even when a medication is keeping our disease stable. There’s also the stress we face when switching employers and having to restart the process of getting coverage for our heavy-duty medications with a different insurance and specialty pharmacy.
The Cost of Staying “Stable”
Routine monitoring is a non-negotiable part of IBD care. Annual lab tests, scans, and scopes add up.
This includes:
Bloodwork (often every 3-6 months and sometimes more depending on whether you’re flaring)
Stool tests
Colonoscopies and endoscopies
Imaging like MREs, CT scans, intestinal ultrasounds
These aren’t one-time expenses; they’re repeated regularly to track inflammation and prevent complications. And while they’re essential, they often come with recurring out-of-pocket costs that add up over time. Even after living with Crohn’s for nearly 21 years, it’s always a surprise how much my labs are going to cost. I try and get my colonoscopies in December before my deductible starts over at the start of the year.
Along with managing our disease with those costs, there are also the copays to see specialists to manage our care. A $40 copay to see a dermatologist, bone health doctor, ophthalmologist, primary care doctor, gynecologist…the list goes on, adds up quickly.
Travel, Parking, and Time Away
IBD care isn’t always close to home. My GI office is about 40 minutes away, compared to many people I know, that’s close by. Due to lack of access, many patients must travel to see specialists, infusion centers, or undergo procedures. That can mean:
Gas, tolls, and parking fees (I know some patients who take an airplane to appointments!)
Hotel stays for early morning procedures and out-of-state appointments
Time off work (for patients and caregivers)
These logistical costs are rarely acknowledged, but they’re part of the reality. There have been countless times through my patient journey when I’m stuck in traffic and resent the fact that I have to waste so much time just to manage my disease.
The Cost of “Safe” Food
Food is one of the most personal and frustrating parts of living with IBD.
There’s no one-size-fits-all diet, and many patients rely on trial and error to figure out what works. Often:
“Safe foods” can cost more
Specialty items aren’t always covered by assistance programs
What works one month may not work the next
The financial burden of constantly adapting your diet is real and ongoing. Working alongside a registered dietitian for nutritional guidance may or may not be covered by your insurance. Many insurers cover medical nutrition therapy for digestive diseases, so make sure to look into this.
The Everyday Essentials
Then there are the items no one puts on a medical bill, but every patient knows are necessary:
Extra toilet paper and wipes
Heating pads
Backup clothes and supplies for emergencies
Over-the-counter medications and supplements
The cost of colonoscopy prep (buying clear liquids, Miralax/Dulcolax, SUTAB pill prep is about $50 depending on insurance, etc.)
Individually, they may seem small. Together, they’re part of the cost of living with IBD every single day.
The Hidden Cost of Missed Work
IBD doesn’t follow a schedule. Flares, fatigue, appointments, and recovery time can all impact a person’s ability to work consistently. That might look like:
Missed work days
Reduced hours
Limited career flexibility
Lost income over time
For many, this is one of the most significant and least visible financial burdens. After my bowel resection surgery, I had to be on short-term disability for 2 months which was only 60% of my salary.
Mental Health Support
The emotional weight of IBD is just as real as the physical symptoms.
Therapy, stress management tools, and mental health support can be critical for coping, but they’re not always fully covered by insurance. Many patients pay out-of-pocket for care that helps them navigate:
Anxiety around flares
Medical trauma
The daily uncertainty of chronic illness
For many of us, this is not optional, it’s part of comprehensive care.
Even in Remission, the Costs Don’t Disappear
One of the biggest misconceptions about IBD is that remission means everything goes back to normal. But financially, that’s rarely the case.
Even in remission, patients are still:
Taking medications
Attending regular appointments
Monitoring for signs of inflammation
Planning for the unexpected
The disease may be quiet, but the costs are not. As chronic illness patients, we know how delicate our remission is and that on any given day we can be back in a hospital bed trying to navigate an obstacle that wasn’t on our radar a week prior.
Why We Need to Talk About This More
The financial burden of IBD is often invisible, but it affects real-life decisions every day:
Can I afford this medication?
Should I delay this test?
Is it worth taking time off work for this appointment?
These aren’t just healthcare questions, they’re quality-of-life questions. Often, we can feel like a burden to our partner and our family as the medical bills come in, with no end in sight.
And until we talk more openly about the economic impact of chronic illness, patients will continue to carry this weight quietly.
What Can We Do About It?
Ask about patient assistance programs Many drug manufacturers offer copay cards or financial aid.
Request itemized bills Errors happen more often than you think and can be corrected.
Talk to your care team about costs Doctors can sometimes adjust testing frequency or suggest alternatives.
Time big procedures strategically If possible, schedule costly tests after hitting your deductible.
Use HSA/FSA accounts if available These can help offset out-of-pocket expenses with pre-tax dollars.
Don’t skip mental health support—ask about coverage options Some therapists offer sliding scale fees.
Final Thoughts
IBD is more than a diagnosis. It’s more than symptoms. It’s a lifelong condition that comes with physical, emotional, and financial layers, many of which no one warns you about. But acknowledging those realities doesn’t make patients weak. It makes the conversation more honest. And that’s where change begins.
Knowing what to eat with IBD can feel stressful and overwhelming. While research updates in our community are often exciting, the “news” isn’t always actionable for patients and caregivers. Food, however, is where the rubber meets the road—it’s a daily, practical touchpoint for those of us living with IBD.
Kristin Cunningham, MHA, RD, CSDH, LD, a registered dietitian at WashU’s IBD Center in St. Louis, understands this reality both professionally and personally. Diagnosed with Crohn’s disease more than 30 years ago, Kristin recently shared a presentation with her local Crohn’s & Colitis Foundation chapter focused on choosing snacks that are affordable while still meeting the unique needs of someone with IBD.
This week on Lights, Camera, Crohn’s, Kristin offers insight into how we can approach nutrition and everyday food decisions—whether we’re in a flare or remission.
Food Insecurity and IBD
A growing concern in the IBD community is access to food itself. Research shows that 13.5% of Americans with IBD experience food insecurity, compared to 9% of the general population.
“We know food costs have risen in the past three years, and SNAP benefits have decreased for some, so we can reasonably predict that food insecurity rates are even higher now,” Kristin explains.
Certain groups are disproportionately affected, including individuals who are non-Hispanic Black, uninsured or on Medicaid, or relying on SNAP benefits. Kristin emphasizes that clinicians should routinely screen for food insecurity and take a multidisciplinary approach, bringing in dietitians and social workers to better support patients.
Pain Points from our Community
One of the biggest emotional burdens Kristin sees? Guilt.
Many people with IBD blame themselves, believing they should have been able to pinpoint the exact food that “caused” a flare.
“I try to offer reassurance that active disease is much more complex than just something eaten,” she says. “Diet may play a role, but there are many other factors outside of our control that drive inflammation.”
Beyond that, patients commonly struggle with:
Fatigue that makes meal planning feel impossible
Limited time or cooking skills
The rising cost of food
Dealing with Diet while flaring
Kristin is quick to validate just how difficult eating can be when symptoms are at their worst.
“I struggle to eat well when my disease is active, too,” she shares. “Even water moving through your GI tract can hurt.”
Her approach is not about eliminating discomfort completely—but about minimizing additional irritation and maintaining nutrition while the body heals.
That often means focusing on foods that are easier to digest and gentler on inflamed areas, such as:
Peanut butter
Greek Yogurt: Select a yogurt with 7 grams or less of added sugar. The least costly way to achieve this while avoiding artificial sweeteners is to buy plain yogurt & flavor on your own. For example, with vanilla extract, fruit, 1 tsp of honey/sugar/maple syrup, which would add 4-6 grams of added sugar.
Canned Black Beans/Hummus: You can mash up any canned beans for tolerance. Rinse salted canned beans with water to reduce sodium content.
Avocado
Hard boiled Eggs
Cottage Cheese with fruit: Select cottage cheese that is 2% fat or less (unless trying to gain weight) & free of carrageenan. Select diced fruit in 100% juice to avoid added sugar or artificial sweeteners.
Cereal: Select a cereal with 2+ grams of fiber & 4 grams or less of added sugar per serving.
Preparation matters just as much as the food itself. Chewing thoroughly, cooking well, peeling, mashing, or pureeing can all make a meaningful difference.
For those open to more structured approaches, Kristin may suggest:
While these options have stronger evidence in Crohn’s disease, early research suggests potential benefits in ulcerative colitis as well. That said, Kristin is transparent, she knows from firsthand experience, that these approaches can be difficult to tolerate and may take weeks to show results.
“Most of my patients aren’t interested in that level of structure, and that’s completely understandable,” she says. “But people deserve to know these options exist.”
Snacking with IBD
Kristin’s top three snacks are guacamole and chips, Cheerios, and snack cookies.
Snack Cookie Recipe
Serves: 6
Ingredients:
• 2 Ripe Bananas
• 1 egg
• ½ cup nut or seed butter
• ½ TB olive oil
• 1 tsp vanilla extract
• 1 cup Flour of choice (almond, white wheat, whole wheat, etc.)
Directions: Preheat oven to 350 F. Line baking sheet with parchment paper. Add bananas to a large bowl & mash. Add remaining ingredients (except cereal) and mix well. Add cereal and mix well. Drop by 1-1 ½ TB scoops onto baking sheet. Makes 12 cookies. Store any not eaten same day in an airtight container in the refrigerator.
Final Thoughts
Food will never be a perfect science with IBD, and it’s not supposed to be. What matters isn’t control, but connection: learning your body’s cues, honoring its limits, and responding with flexibility instead of fear. Some days that might look like a well-balanced meal; other days, it’s a few safe bites just to get through. Both count. Both matter. Because living with IBD isn’t about getting it “right,” it’s about continuing to nourish yourself, in whatever way you can, even when it’s hard.
Kristin’s list of helpful resources for IBD-friendly recipes:
Nine years since my life split into a clear before and after. Before motherhood. Before learning how much my heart could stretch. Before realizing I could love someone so fiercely while still carrying a body that has never felt predictable or safe since my Crohn’s diagnosis in 2005.
I entered motherhood already shaped by chronic illness. Crohn’s disease had been part of my identity for years before I ever held a positive pregnancy test in my hands. I knew what it meant to live with uncertainty. I knew how to navigate flares, fatigue, medications, and fear. What I didn’t know was how those experiences would transform me into an entirely new version of myself—an IBD mom. When I got pregnant, I only knew of one woman, my cousin’s wife, who has Crohn’s, and stayed on her biologic throughout her four pregnancies.
This week on Lights, Camera, Crohn’s a reflection on my patient journey and what it felt like to go through family planning, pregnancy, and motherhood as a woman with IBD and what I want others to know.
When I Was “Just” the Patient
For a long time, my world revolved around survival. Appointments. Side effects. Lab work. Scopes. Injections. Recovery days. Canceled plans. Hospitalizations. Weaning off steroids. Learning how to read my body’s subtle warning signs. Learning when to push and when to rest.
Crohn’s taught me resilience long before I knew I would need it in motherhood. But it also taught me hyper-awareness. A constant scanning of my body for what might go wrong next. A relationship with fear that felt both protective and exhausting. As time passed, I learned to listen to how my body was speaking to me through symptoms.
When I imagined becoming a mom, that fear came with me. I had bowel resection surgery two months after getting engaged, I was planning a wedding, and for the first time after a decade of living with Crohn’s I had FINALLY heard the word “remission” for the first time. My fiancé (now husband) and I knew once we got married 10 months later, that we would need to capitalize on that remission and hopefully start our family while we knew I was well enough to do so. Despite being in remission, I still had many questions and thoughts racing through my mind:
Would I be healthy enough? Would my medication be safe? Would I flare during pregnancy or postpartum? Would my disease rob me of moments I dreamed about? Would I be hospitalized and away from my child?
…the list went on. If you’re an IBD mom or one day aspire to become one, you know the questions we all face.
I wanted to become a mom more than anything, but I carried quiet doubts about whether my body was capable of sustaining not just a pregnancy, but a lifetime of caregiving.
Becoming a Mom with Crohn’s
The day I became a mom everything shifted. Not because my Crohn’s disappeared. Not because my health suddenly became perfect. But because my why expanded.
Suddenly, my body was no longer just something I endured. It was the home my child lived in. The vehicle through which I would show up, nurture, protect, and love. That realization changed the way I approached my overall health as a mom with IBD. My pregnancy with Reid gave me a renewed sense of love and appreciation for my body.
Taking my medication wasn’t just about me anymore. Advocating at appointments wasn’t just self-preservation. Resting wasn’t weakness. Prioritizing sleep wasn’t indulgent.
It was parenting. I began to see caring for myself as an extension of caring for my child. That mental shift — from “patient” to “patient who is also a mother” — was subtle but seismic. Rather than waiting until I was too weak to even walk through the emergency doors by myself, I started to alert my care team within days of recognizing that my Crohn’s seemed a bit “off” so that we could nip any issue that arose in the bud.
Learning to Mother Through Difficult Days
Motherhood with Crohn’s is not picture-perfect. But regardless of your health status, there is no such thing as perfect when it comes to being a mom. You must remind yourself of this and give yourself grace.
There are days I have shown up with heating pads tucked under sweatshirts. Days I’ve read stories from the bathroom floor. Days I’ve powered through school drop-offs on pure adrenaline and grit. Days I’ve shown up to PTO meetings and coached soccer on pain medication. Days I’ve cried because I felt like I was failing at both having a chronic illness and being a mom.
I’ve been in “remission” since 2015, the entire time I’ve been a mom, which I’m eternally grateful for, but just because I’ve been in remission does not mean I don’t face countless struggles with this disease. That’s something I wish people would understand. IBD is a chronic illness, just because someone is in remission doesn’t mean they are free of pain, stress, and more.
I’ve had to learn that good motherhood doesn’t require constant physical perfection. Some seasons look like big adventures and energy. Others look like quiet cuddles, movie days, and choosing rest over outings.
Both count.
My children are being raised by someone who understands empathy, flexibility, and listening to their body. That matters. You’ll notice as a parent with chronic illness how quickly your little ones develop empathy. It’s next level. And so beautiful. You don’t even have to teach it, it’s innate in them because of their daily reality.
Raising a Child Who Understands Illness and Compassion
One of the unexpected gifts of being an IBD mom is watching compassion take root early.
My three children know that bodies work differently. That medicine helps people live. That rest is sometimes necessary. That we don’t judge what we can’t see. They’ve learned that strength isn’t always loud.
Sometimes strength looks like getting up anyway. Sometimes it looks like asking for help. Sometimes it looks like choosing yourself.
Those lessons feel just as important as anything in a textbook.
How Motherhood Changed My Relationship with My Body
Before becoming a mom, there were times my body felt like the enemy.
The source of pain. The reason plans fell apart. The thing holding me back.
Motherhood complicated that narrative.
This body carried three children. This body nourished three children. This body continues to show up, even when it’s tired, inflamed, or aching.
It isn’t perfect. But it is more than capable.
I still have hard days. But honestly, I have a lot more amazing days. I never take a feel-good day for granted. Even after more than two decades of living with Crohn’s, there are still moments where I fantasize about what it would be like to just be a healthy person and not have the burden of my disease.
But I also hold more gratitude now. A grounded, honest one. My three children are my greatest motivation to push through and be my healthiest self.
From Surviving to Advocating
Becoming a mom didn’t quiet my voice.
It amplified it. Ironically, this blog, Lights, Camera, Crohn’s, launched July 23rd, 2016… I found out TWO days later I was pregnant with my oldest son, Reid. So, this blog truly captures every moment of pregnancy, family planning, and motherhood from the perspective of someone who learned as I went.
I advocate not only for myself now, but for a future where my children grow up in a world that understands chronic illness better than the one I grew up in.
I speak out because I want fewer people to feel dismissed. I share stories because I want fewer people to feel alone. I push for better care because I want better options for the current and the next generation.
I want couples to feel empowered by their decision to have a family, however that may look for them.
I hope women feel comforted by all the constant research going on to address what’s safe and effective as they bring life into this world. I participated in IBD pregnancy studies with all three of my kids, my youngest who turns five in July will be followed through the PIANO study until age 18!
Motherhood turned my survival into purpose.
Nine Years In: Who I Am Now
I am still a patient. I am still navigating Crohn’s. I still face uncertainty at times, but through a much different lens.
I am also a mom of nearly a decade.
A mom who has learned how to hold fear and hope at the same time. A mom who knows that love is not measured in energy levels. A mom who shows up imperfectly, consistently, and wholeheartedly.
I didn’t become a mother despite Crohn’s.
I became a mother with Crohn’s.
And over the past nine years, I’ve learned that those two identities can coexist, not in conflict, but in strength. I swear I blinked and somehow my sweet Reid, my baby, is nearly double digits. I don’t think there will ever be a time in my lifetime that I don’t stare at all of my children in awe of their existence, I’m sure if you’re a parent you feel the same way. It’s a miracle they are here, healthy, and thriving. So much of why I share my family so openly is to show how my children, who were all exposed in utero to Humira, are doing so beautifully in school, sports, and socially.
To the IBD Moms (and Future Moms) Reading This
You are not broken. You are not behind. You are not failing.
You are doing one of the hardest jobs in the world while managing one of the hardest diseases. That deserves recognition.
Later this month, my Reid is nine.
Nine years of learning. Nine years of adapting. Nine years of loving fiercely in a body that isn’t always kind.
Transitioning to college with Inflammatory Bowel Disease is both an academic and healthcare milestone. IBD is an unpredictable, relapsing condition. A person managing urgency, fatigue, medication side effects, or active inflammation is already navigating challenges their peers are not. IBD may shape certain logistics along the way, but it does not have to define your entire college experience.
As someone who was diagnosed with Crohn’s disease at age 21, two months after graduating from Marquette University, I did not require these accommodations, but looking back at that part of my life (20+ years ago), I would have needed and really benefited from this information had I been diagnosed younger.
This week on Lights, Camera, Crohn’s we hear from Amanda Vispo, MSW, LCSW, a Clinical Social Worker from the IBD Center at Boston Children’s Hospital about tips for overcoming challenges during this chapter of life and knowing what accommodations provide the best equity and access for everyone in our community.
The shift from high school to college
Ideally, families should begin considering accommodations during junior year of high school, even if a teen is feeling well.
“I often describe accommodations as an insurance policy. We are not anticipating decline. However, if a flare occurs, we want patients focused on recovery rather than scrambling to put supports in place,” Amanda advises. “A pattern I frequently see is patients in remission during campus visits underestimating what they might need during a flare. Sharing a bathroom with an entire floor can feel very different during active symptoms. Mid-year housing changes are not always possible.”
In appointments, Amanda asks patients to think about a particularly difficult flare day. Not to alarm them, but to encourage honest reflection. What did they need? How often were they in the bathroom? How fatigued were they? What helped at home?
“We then discuss how to replicate those supports in a college setting. Planning early preserves flexibility, waiting can limit options.”
College marks a meaningful shift in responsibility. In high school, accommodations are proactive and team driven. Parents are automatically involved, and systems monitor progress closely.
“In college, students must self-identify and initiate contact with disability services. Once accommodations are approved, the student becomes the primary communicator with professors, says Amanda. “Understanding this shift early makes the transition smoother. Transition planning is not only about documentation, but also about building confidence and developing self-advocacy skills that extend well beyond college.”
What steps can high school patients take now to make the transition smoother?
Preparation happens gradually. Students can begin with:
Practicing how to clearly describe the functional impact of their symptoms
Learning their medication schedule and treatment basics
Communicating directly with providers
Thinking intentionally about housing needs and daily symptom patterns
Small steps toward autonomy build lasting confidence.
Reframing accommodations as tools
Accommodations do not lower academic standards; they remove barriers created by symptoms outside a patient’s control. Equity means recognizing that not everyone starts from the same physical baseline.
Amanda says, “Adjusting the environment through flexible attendance, housing, or testing supports ensures patients have a fair opportunity to demonstrate their ability. That is not special treatment. It is equitable access.”
Flares can occur without warning, and their duration and severity are difficult to predict. Accommodations can provide predictability within that uncertainty.
“When patients know they can leave class without penalty, take stop-the-clock exam breaks, or rely on stable housing, it reduces anticipatory anxiety. That reduction in stress matters because heightened stress can worsen GI symptoms and complicate disease management.”
Having established accommodations allows students with IBD to focus on healing during flares instead of managing academic logistics.
Knowing how to communicate with disability services
When preparing patients for conversations with disability services, Amanda reminds them they are not navigating this process alone. GI teams play an important role in advocacy.
“We provide detailed letters outlining the diagnosis, treatment plan, the relapsing nature of the condition, and recommended accommodations. Many colleges also require medical verification forms, which providers complete to ensure disability services has clear documentation,” says Amanda.
The patient’s role is not to prove their illness, but to explain how symptoms affect their academic experience. Amanda encourages her patients to focus on functional impact rather than diagnosis alone.
For example, a patient might explain:
During flares, I may need urgent restroom access multiple times per class.
I receive infusions every six to eight weeks that require travel and recovery.
Fatigue affects my ability to attend early morning classes.
There are periods when I can complete coursework but may not tolerate being physically present.
Clear, specific descriptions help disability services understand how symptoms translate into academic impact. When paired with medical documentation, this creates a complete picture.
Accommodations to seek out
One support Amanda strongly encourages her patients to consider is priority or early course registration.
IBD symptoms often follow patterns. Some patients struggle more in the mornings. Others experience worsening symptoms later in the day. Many travel home periodically for infusions or follow-up care. Priority registration allows patients to:
Choose class times that align with when they function best
This is not about lowering expectations. It is about working with the body rather than constantly pushing against it. Other helpful accommodations may include:
Housing assignments best suited to medical needs
Flexible attendance policies for medically excused absences
Access to lecture recordings
Modified deadlines during acute flares
Permission to bring necessary food or drinks into class
Housing and medical stability
Urgency and frequency are hallmark symptoms of IBD, particularly during flares. Sharing a hallway bathroom with many peers can increase anxiety and reduce privacy. Because stress can exacerbate GI symptoms, reducing that stress supports disease management. Additionally:
Some people require rectally administered medications that necessitate privacy
Patients on immunosuppressive therapies may benefit from reduced exposure in shared spaces
Fatigue is common, and stable sleep supports disease control
Private rooms, single-occupancy or lower-trafficked bathrooms, or suite-style housing with a lower patient-to-bathroom ratio can meaningfully reduce stress and preserve dignity. These are practical components of symptom management.
Managing the stress and guilt students often feel
Amanda says she hears this all the time. Patients will say, “I don’t want special treatment,” or “I should be able to handle it.” Managing a chronic illness already requires resilience. Those with IBD are navigating inflammation, fatigue, medication effects, and unpredictability, often invisibly.
Amanda wants those with IBD to know, “Accommodations ensure those with chronic illnesses are not penalized for something outside their control. Anticipating needs and putting support in place reflects responsibility, not weakness. There is no shame in using tools that allow full participation.”
Final Thoughts
College should be a time of exploration, independence, and possibility, not a test of how much suffering someone can quietly endure. Living with IBD means carrying an unpredictable disease into a setting built for predictability, but with the right supports in place, students can thrive both academically and medically.
Proactive accommodations are not a backup plan for when things go wrong; they are a foundation that allows students to fully engage when things go right. Planning ahead, practicing self-advocacy, and partnering with a GI care team transforms college from a period of constant vigilance into one of growth, confidence, and opportunity. IBD may shape the path, but it does not need to limit the destination.
In 2016, Nick Zecchino was living the dream. After years of relentless dedication, he signed a Division I football scholarship to the University of Connecticut. For a young athlete who had poured his heart, body, and soul into the sport he loved, it was validation that every sacrifice had been worth it.
“I was on top of the world,” Nick recalls. “It was the proudest day of my life to that point. Then, one month later my health started to decline out of nowhere. It was scary, there were a lot of questions and uncertainties with what my future was going to hold.”
This week on Lights, Camera, Crohn’s a look at Nick’s remarkable journey and his comeback story both on and off the football field that left me in awe.
When a Dream Collides with a Diagnosis
Like many of us, Nick’s health issues blindsided him out of nowhere. He lost his appetite. Crushing fatigue set in. Blood appeared consistently in his stool, and his bowel movements increased dramatically. In March 2016, a colonoscopy confirmed what he had never even heard of before: ulcerative colitis.
At first, Nick assumed it would be manageable. Get it under control. Heal up. Be ready for UConn by June.
“I didn’t know the long road ahead,” he says.
Weeks turned into months, and instead of improving, his symptoms worsened. During his senior year of high school, Nick missed most of his baseball season due to a constant flare. Maintaining weight and building muscle, which are essential for a college football player, became nearly impossible. By April, the fear crept in: What if this costs me football?
Playing Through the Unthinkable at UConn
Nick arrived on campus determined to push through. But ulcerative colitis never truly loosened its grip.
From the first game of his freshman season to the last, his health declined sharply. Between September and November alone, during his first college football season, Nick lost more than 50 pounds! By the final game, he weighed just 145 pounds and looked visibly ill. He used the bathroom 20 to 25 times a day, often passing only blood and mucus.
“There really wasn’t any managing it at that point,” Nick says. “I just had to deal with it and the consequences.”
He tried to hide his illness from coaches and teammates, unwilling to show vulnerability or weakness. He timed bathroom breaks to the last possible minute before kickoff, rushed off at halftime, and avoided eating on game days altogether. Even then, the urgency never stopped.
Years of Medications and No Relief
Nick’s treatment history reads like a roadmap of severe disease. After initially trying mesalamine and Lialda, his doctors escalated to stronger therapies as his condition worsened. Over time, he was on Remicade, Humira, Entyvio, 6-MP, prednisone, and antibiotics like Cipro. He even tried multiple biologics still in clinical trials for ulcerative colitis.
Nothing worked to wrangle his IBD under control.
At one point, doctors administered the maximum dose of Remicade possible, at the shortest interval allowed. It still wasn’t enough.
A Turning Point
Eventually, Nick’s dad made the hardest call of his life.
“My dad picked me up from UConn because I couldn’t go on like that anymore.”
A few days later, they were sitting in a doctor office at Mount Sinai in New York with Dr. Arthur Kornbluth, an IBD specialist who would change the course of Nick’s life.
“Going to Mount Sinai saved my life,” Nick says simply.
Dr. Kornbluth tried everything. Every possible medical “trick in the book” to try and get Nick into clinical remission. But despite his efforts, Nick couldn’t achieve lasting remission. Finally, they faced the reality neither wanted to confront: surgery.
“It was terrifying,” Nick admits. “But it was the only way I could get my life back and maybe still have a chance to play football again after my future was put on hold for over two years. Making the decision to go to Mount Sinai and get surgery completely changed the trajectory of my life. It will always be one of the best decisions I’ve ever made.”
Three Surgeries. One Unbreakable Goal.
Nick had a total colectomy (which removed his entire colon and gave him a temporary colostomy bag, followed by Takedown surgery and a J-pouch). After the three surgeries in six months, Nick finally began to feel like himself again. In January 2019, he returned to the gym for the first time.
He was weak. Deconditioned. A shell of the athlete he once was. But his motivation never wavered.
“Football was my one and only motivation,” he says. “I spent nights in the hospital bed thinking about how I could get back on the field.”
By June 2019, Nick arrived at Purdue University. At this point, he was not just healthier, but also confident that his dream was no longer out of reach.
A Second Chance at Everything
Walking onto Purdue’s campus felt surreal. Nick felt like a freshman again, even though he wasn’t. In many ways, it was a new life.
“I was just so grateful,” he says. “I had a completely different outlook than anyone else my age.”
When game day arrived, the nerves hit harder than they ever had before. But the moment he took his first snap, they vanished.
“I felt like myself again,” Nick says. “It was one of the best feelings in the world.”
From that point forward, confidence replaced fear. He had already survived more than most people ever would.
Life After UC—and Living Medication-Free
During his four years at Purdue, Nick dealt with recurring pouchitis every couple of months. Antibiotics like Cipro helped, but he grew tired of relying on medication.
Determined to find another way, Nick dove into research on gut health, inflammation, and natural support. Supplements like L-glutamine made a noticeable difference. Eventually, the pouchitis stopped coming back.
One day, his dad noticed the growing lineup of supplements on the kitchen counter.
“If this works so well for you,” his dad asked, “why not create something that could help other people too?”
That conversation sparked the creation of Carna Nutrition and its flagship product, GUT R3BU1LD—a gut health formula inspired by Nick’s own journey.
The name Carna comes from Roman mythology: the goddess of health, vitality, and protection of the internal organs, while helping with digestion.
“I created the full spectrum formula of our product with the help of a health & wellness professional that has been in the industry for 25+ years,” explains Nick. “We also used the access to the manufacturers’ scientists that they have in-house to help us understand the way that the pharmaceutical grade and clinically studied dosages of the ingredients that we have in the product all work together synergistically in a beneficial way for every major gut healing pathway during digestive stress.”
“He Was on His Death Bed. It’s Incredible What He Did.”
Nick’s comeback left a lasting impression on everyone who witnessed it, including his football coaches.
Former UConn head coach and Purdue defensive coordinator and linebackers coach, Bob Diaco, recalls:
“I remember watching him and trying to figure out how to stop it. My wife hadn’t seen him for a few months, and she was distraught. He was on his death bed for real. It was bad. It’s incredible what he did.”
“He’s the kind of kid that makes you better,” Diaco continued. “He’s been the underdog at every turn. He always comes out on top. He’s always making an impact on the people around him in a positive way.”
A Message to His Younger Self and to Young Athletes Today
If Nick could speak to his 2016 self, he knows exactly what he’d say:
“Your journey isn’t going to look anything like you imagine, but it’s going to be the most rewarding path for you. Trust it.”
And for young athletes with IBD who are scared their diagnosis might end their dreams?
“Your diagnosis is not the end of your story,” Nick says. “You’re allowed to struggle. You’re allowed to take time to heal. But don’t lose hope. Most of the battle is mental. Stay strong, stay supported, and keep chasing your dreams.”
Nick’s story is a reminder that even when IBD takes everything, it doesn’t get the final word. Sometimes, it forges something stronger than before. Whether you’re a young person living with IBD or a caregiver worried about what the future will hold for your child, I hope Nick’s incredible story of resilience serves as inspiration to show all that’s possible despite the difficult diagnosis of IBD. I found it interesting that Nick wouldn’t trade all he’s endured to be where he is today, as I always say the same. As time passes and hindsight is 20/20 so many of us experience a transformation that shapes who we are today, all because of the struggles that took us to get here.
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