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:
To break it down, without insurance, two auto-injector Humira pens cost an average of $10,782.36.
Without insurance, a Remicade infusion could cost you anywhere from $4,000-$7,000.
The list price of Skyrizi without insurance is approximately $32,566 per 150 mg injector pen, with variations depending on pharmacy and dosing method.
A 30-day supply of Rinvoq pills without insurance would cost between $7,000-$9,600, depending on dosage and pharmacy.
Without insurance, Stelara costs approximately $21,191 for a 45 mg syringe or $25,497 for a 90 mg syringe, with potential savings through discount programs and patient assistance.
… you get the idea.
And even with insurance, we deal with:
- Monthly copays
- Specialty pharmacy fees
- Deductibles that reset every year
- 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.
More Information:
4 Tips for When Insurance Doesn’t Cover Your Medication – GoodRx
How to save money on prescription medication: 13 tips
AGA-Economic-Burden-Infographic.pdf
The economic burden of inflammatory bowel disease – The Lancet Gastroenterology & Hepatology
Additionally, users can enable the sharing of “Progress Reports” which include adherence information and all other modalities to optimize your health. Sometimes a caregiver may not be aware of what you need to take and when, this too can be shared via the “Share Care Plans” functionality.
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