The Financial Burden of Crohn's: Managing Medical Expenses

When I was first diagnosed with Crohn’s disease, I knew my life was going change. Although I'd already lived with symptoms for 6.5 years, finally having a proper diagnosis allowed me to explore appropriate treatment plans, and eventually to find remission.

Each stage and each season of living with Crohn's disease has come with it's own challenges. One I never expected to have to deal with was how much Crohn's disease would affect my bank account. The cost of managing a chronic illness is something most people don’t talk about, but for those of us living with IBD, it’s likely a reality we face every single day.

The hidden costs of Crohn’s disease

Managing Crohn’s disease isn’t just about spending time locked in the bathroom, excessive doctor’s appointments and a plethora of regular medications. There are so many additional costs that pile up along the way, including requiring frequent lab tests, imaging, hospital stays, surgical procedures, and receiving specialty care.

And then there are the indirect expenses: special diets, supplements, missed workdays, and even travel costs to see those aforementioned specialists. It can be incredibly overwhelming, and at times, it feels like a full-time job just to keep up with the financial side of things.

Navigating insurance and coverage headaches

If you’ve ever had to battle with an insurance company, ESPECIALLY for a prior authorization approval, you know the frustration of trying to get the care you need without going broke (or insane) in the process. I’ve spent countless hours on the phone trying to get prior authorizations, appealing denied claims, and figuring out what my insurance will and won’t cover, sometimes long after services have been rendered, hospital stays have been resolved, and medications have been administered. It’s exhausting, and to be honest, it feels like the system is set up to make me fail.

One of the biggest lessons I’ve learned is to be persistent. Insurance companies are so far from perfect, and mistakes happen more often than they should. Keeping detailed records of medical bills, prescriptions, and correspondence with insurance representatives has helped me fight back when claims are denied unfairly. It has also helped me to not pay more money than I owe to any one provider or for any one service or medication.

Finding financial assistance programs

The good news? There are programs out there designed to help. Many pharmaceutical companies offer patient assistance programs that provide discounts or even free medications for those who qualify. Nonprofits like the Crohn’s & Colitis Foundation and the Patient Advocate Foundation also have resources to help with medical expenses.

If you’re struggling with costs of living with IBD, don’t hesitate to ask your doctor’s office about financial assistance programs. Many hospitals and medical institutions have programs to help uninsured or underinsured patients. They may even offer discounts or payment plans to those on commercial insurance, like myself. It’s not always advertised, but help is sometimes available if you ask the right people.

Budgeting for the unexpected

One of the hardest parts of managing a chronic illness is the unpredictability. You never know when a flare will send you to the hospital or when you’ll need an unexpected test or procedure. That’s why setting up an emergency medical fund, even if it’s just a small amount each month, can be a game-changer.

I struggled with this for a long time, knowing how much money to set aside and when, but now I have a fairly consistent routine and it's helped manage my mental health in knowing that I have some emergency funding should the need arise.

I’ve also learned to be strategic about scheduling medical appointments and procedures. If I know I’m close to hitting my insurance deductible, I try to schedule any necessary tests or treatments before the end of the year so they’ll be covered at a higher rate. Planning ahead as much as possible has saved me a lot of stress and money.

Advocating for yourself

The financial burden of Crohn’s is unfair, and it’s okay to feel frustrated by it. But one thing I’ve learned is that advocating for yourself is key. Whether it’s negotiating medical bills, seeking out financial aid programs, or pushing back against insurance denials, speaking up can make a real difference. As patients, we already have to suffer enough. We owe it to ourselves to be our own fierce and consistent advocates, ensuring that we are cared for in the most financially appropriate way possible.

If you’re struggling with the costs of Crohn’s, please know you’re not alone.

There’s no shame in asking for help, and there are resources out there to support you.

Managing this disease is hard enough. Figuring out how to afford it shouldn’t be something we have to do alone.