Stelara For Crohn’s Disease: How It Works & My Experience

When I first got diagnosed with Crohn’s Disease in 2012, it felt like my whole life shifted overnight. The urgency, the pain, the food fears...I felt like a stranger in my own body.

Doctors never told me why Crohn's happens, they just threw out medications like prednisone, mesalamine, Humira, and Stelara. Back then, I didn’t know what any of that meant. Now, after over a decade of navigating Crohn’s and figuring out what actually works for me, I can say I’ve seen the full spectrum, from pharmaceuticals to natural healing.

This post is about Stelara for Crohn’s. I’ll cover all the basics: how it works, side effects, and who it’s for, but I’ll also share my personal experience with it. Whether you’re just starting out or you’re years into this like I am, this is everything I wish someone had laid out for me clearly.

Stelara (ustekinumab) is a biologic drug that targets two immune system messengers: interleukin-12 and interleukin-23. These guys are known for stirring up inflammation, especially in autoimmune conditions like Crohn’s and psoriasis. Stelara blocks them from doing their thing, which in theory should calm inflammation down.

The FDA approved Stelara for moderate to severe Crohn’s disease in 2016. Most people get prescribed it for IBD after trying and failing other meds, especially anti-TNF drugs like Remicade or Humira.

I got offered Stelara after other medicines started working less for me. I wasn’t ready for it back then and eventually went a different route (more on that later), but I spent a ton of time learning about it.

Instead of just going after the general immune system like steroids or older biologics do, Stelara targets IL-12 and IL-23 which are proteins involved in the inflammatory response. It basically tries to quiet down the overactive immune signals that lead to gut inflammation.

It’s considered an immunosuppressant, but it’s different from anti-TNF drugs. It doesn’t suppress the whole immune system across the board. That’s one of the reasons some people prefer it over things like Remicade.

In clinical trials, people who hadn’t responded to other treatments actually did well on Stelara. Some hit remission. Some just had fewer symptoms. It’s not a cure, but it might help bring the fire down when it feels like your gut is constantly inflamed.

Stelara isn’t usually a first-line drug. It’s more of a “when the others didn’t work” kind of situation. You’ll often see it offered when:

• TNF blockers like Humira or Remicade have failed

• You can’t tolerate side effects from other biologics

• You have moderate to severe Crohn’s that isn’t well controlled

I was offered biologics a decade ago and instead I made the decision to fully commit to a natural healing path. Some folks respond great to it. Others don’t. That’s kind of the pattern with all Crohn’s treatments.

The way Stelara is given is actually one of the reasons some people like it:

• First dose: one-time IV infusion at an infusion center, based on your weight

• Maintenance doses: subcutaneous injection every 8 weeks

You can inject it yourself at home after training, kind of like an EpiPen.

Based on clinical trials (like UNITI-1, UNITI-2, and IM-UNITI), here’s what they found:

• About half of patients saw clinical response within 6 weeks

• Around 40–50% maintained remission at one year

• Some people who failed other biologics still responded to Stelara

It’s not a guaranteed fix, but it’s helped a lot of people. I know several folks from Crohn’s communities who say Stelara is the only thing that worked for them after years of trying everything else.

For me, I never got far enough into using Stelara to say it worked or didn’t. I had the first appointment scheduled, but my gut was telling me to wait. I’d already started experimenting with diet and supplements, and my IBD symptoms were shifting.

That was when I decided to go all in on natural healing and eventually developed what would become the GutMellow Remission Roadmap.

Like any medication that tinkers with the immune system, Stelara has side effects. Here are the common ones people talk about:

• Headaches

• Fatigue

• Upper respiratory infections

• Joint pain

• Injection site reactions

Less common but more serious risks include:

• Infections (like TB, pneumonia)

• Increased risk of certain cancers (still debated, but it’s in the fine print)

• Allergic reactions (sometimes from the IV dose)

• Rare neuro complications like RPLS

Personally, I didn’t want to take the risk. I had already been through side effects on other meds, and at that point, my gut was so sensitive that even minor changes in food or environment would set me off. The idea of suppressing my immune system any further just didn’t sit right with me anymore.

Let’s not sugarcoat it. Stelara is expensive. Without insurance, the price tag can hit $20,000+ per dose. That’s wild.

But:

• Most insurance companies cover it if you meet criteria

• You’ll likely need prior authorization

• The manufacturer (Janssen) has a Stelara withMe program that helps with co-pays

Still, the back-and-forth with insurance is exhausting. One reason I created GutMellow is because I didn’t want people to rely solely on medications with that kind of price tag.

If you decide to move forward, here’s generally what the process looks like:

1.) You’ll get screened for TB and other infections

2.) Insurance pre-authorization

3.) First IV infusion at a center

4.) Follow-up self-injections every 8 weeks

5.) Ongoing bloodwork to monitor immune markers

Some folks start to feel better after the first couple of doses. Others need a few months. Some never respond at all.

How long can you stay on Stelara?

Some people stay on it for years if it keeps working and they tolerate it well.

Does Stelara cause weight gain or loss?

Not directly, but if it reduces inflammation, appetite might come back and weight might stabilize.

What if it stops working?

You may try more frequent dosing or switch to another class like Entyvio or Skyrizi.

Can I get vaccines on Stelara?

Yes, but not live vaccines. Flu, COVID, and shingles shots are generally fine.

Is it safe during pregnancy?

Some people stay on it during pregnancy, but that’s something to discuss with a specialist.

If I had taken Stelara, maybe it would’ve helped. But I reached a point where I didn’t want to gamble anymore. I wanted to build a system I could rely on, even when insurance denied things or symptoms didn’t respond to meds.

That’s how GutMellow was born. I created it for people like me people who wanted more control, more answers, and fewer side effects. It includes:

• My exact Remission Roadmap

• The full eBook: How I Stopped Flare-Ups & Achieved Remission

• Supplement, diet, and lifestyle strategies

• Tools to track what’s actually working

• and more

I’m not anti-medication. I’m just pro-choice, pro-education, and pro-awareness. You deserve to know all the options. Biologics like Stelara might be the right fit, or they might not. But either way, there’s a path forward.

After years of trial and error, I finally found a combination of strategies that worked for me. I went from constant flare-ups to long-term remission, without biologics or surgery. I created GutMellow to share my experience and help others navigate their own healing journey.

The GutMellow Remission Roadmap includes everything I wish I had when I was first diagnosed. It’s a comprehensive resource that outlines the exact steps I took to regain control of my gut health, including:

This blog is for informational and educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. While I am sharing my personal experience, every individual’s health journey is unique. Always consult with a qualified healthcare professional before making any changes to your diet, supplements, medications, or lifestyle. Healing is a personal journey, and what worked for me may not work for everyone.