Not medical advice. This is my personal experience with ulcerative colitis. I'm not a doctor. Always consult your gastroenterologist about your specific situation.
If you have IBD and you've ever been prescribed prednisone, you probably felt your stomach drop. Not because of what the medication does to your gut—but because of everything you've heard about it.
Moon face. Weight gain. Mood swings. Insomnia. Bone density loss. Acne. The list goes on.
I get it. I was terrified of prednisone too. So terrified that I did everything I could to avoid taking it. And that decision landed me in the hospital, hooked up to an IV, getting pumped full of steroids at a much higher dose than I would have needed if I'd just listened to my doctor in the first place.
This is that story.
The Reputation
Prednisone has a terrible reputation in the IBD community, and honestly? It's earned. The side effects are real. I've experienced many of them firsthand.
But here's what I didn't understand when I was first diagnosed: prednisone isn't meant to be a long-term solution. It's a rescue medication. It's the fire extinguisher you grab when your colon is actively on fire.
The problem is, when you're newly diagnosed or going through a rough patch, it's easy to conflate "this medication has side effects" with "this medication is bad and I should avoid it at all costs."
That's exactly what I did.
The Flare I Tried to Ignore
It started the way flares always do for me. A little more urgency. Some blood. Cramping that I told myself was probably something I ate.
I was on Mesalamine, my maintenance medication, and it had been working well enough. So I convinced myself this was a minor setback. Maybe if I ate better, stressed less, got more sleep, it would resolve on its own.
Spoiler: it didn't.
After about two weeks, my symptoms were clearly getting worse. I was running to the bathroom eight, ten times a day. The blood was impossible to ignore. I was exhausted all the time.
But I still didn't want to call my GI. Because I knew what she was going to say.
The Conversation I Dreaded
When I finally called, my GI listened to my symptoms and said exactly what I expected: "I think we need to start you on prednisone."
I immediately pushed back. "Can we try increasing the Mesalamine first? Maybe add a rectal foam? I really don't want to do steroids."
She agreed to try a more conservative approach, but I could hear the hesitation in her voice. She knew. I knew too, deep down. I just didn't want to accept it.
A week later, the conservative approach wasn't working. I was worse. My GI called in a prednisone prescription and told me to start it immediately.
I picked up the prescription. I put it in my medicine cabinet. And I didn't take it.
The Magical Thinking
Looking back, I can see how irrational I was being. But in the moment, it made sense to me. I had convinced myself that:
- The side effects would be unbearable
- Once I started steroids, I'd never be able to stop
- If I just tried harder—better diet, less stress, more rest—my body would heal itself
- Taking prednisone meant admitting my disease was serious, and I wasn't ready for that
None of this was true, of course. But fear isn't rational.
The Breaking Point
Another week passed. I was barely eating because everything made me feel worse. I was getting up five or six times a night to use the bathroom. I couldn't focus at work. The pain was constant.
One morning, I woke up and couldn't get off the couch. The cramping was so intense I was doubled over. My wife took one look at me and said, "We're going to the ER."
I didn't argue.
The Hospital
In the emergency room, they did bloodwork and found that I was severely anemic from the blood loss. My inflammatory markers were through the roof. The ER doctor consulted with a gastroenterologist on call, and they decided to admit me.
And then they started me on IV prednisone.
Not oral prednisone—the pills I'd been avoiding. IV prednisone. A much higher dose, delivered directly into my bloodstream, because my colon was so inflamed that oral medication wouldn't absorb properly anyway.
The medication I'd been so afraid of? I ended up needing more of it, at a higher dose, because I waited too long. My fear of prednisone led directly to more prednisone.
I spent two days in the hospital. The IV steroids worked quickly—by day two, the bleeding had slowed significantly and I could actually keep food down. They transitioned me to oral prednisone and sent me home with a tapering schedule.
The Side Effects I Was So Afraid Of
Yes, I experienced side effects. My face got puffy. I had trouble sleeping. My mood was all over the place. I was hungry all the time.
But you know what? None of it was as bad as being in the hospital. None of it was as bad as the weeks of suffering I put myself through trying to avoid the medication. None of it was as bad as being so sick I couldn't function.
And here's the thing I didn't understand before: the side effects are temporary. You taper off the prednisone over weeks, and your body gradually returns to normal. The moon face goes away. The sleep issues resolve. You feel like yourself again.
But the damage from an untreated flare? That can be permanent. Chronic inflammation can lead to scarring, strictures, and other complications that don't go away when the flare ends.
What I Wish Someone Had Told Me
If you're where I was—dreading prednisone, looking for any alternative, hoping your flare will just magically resolve—here's what I wish someone had told me:
Prednisone is a tool, not a failure. Taking it doesn't mean you've failed at managing your disease. It means you're using the tools available to get your inflammation under control.
Short-term use is different from long-term use. Most of the horror stories you've heard are from people who were on steroids for months or years. A short course to get a flare under control is very different.
The alternative to prednisone isn't "no prednisone." The alternative to early intervention is often more aggressive intervention later. A week of oral steroids now might prevent a hospital stay and IV steroids next month.
Your GI knows what they're doing. They're not prescribing steroids because they enjoy watching you suffer through side effects. They're prescribing them because, in their clinical judgment, the benefits outweigh the risks.
Suffering isn't noble. There's no prize for toughing out a flare without medication. Your body isn't keeping score. Being miserable doesn't make you stronger—it just makes you miserable.
Trust Your Care Team
I'm not saying you should never question your doctor or advocate for yourself. You absolutely should. But there's a difference between asking questions and refusing treatment out of fear.
If your GI recommends prednisone, ask them why. Ask about alternatives. Ask about the expected duration and taper schedule. Ask what side effects to watch for and how to manage them.
But then, if they still think it's the right call, trust their expertise. They've seen hundreds of patients with IBD. They know what happens when flares go untreated. They're not trying to hurt you—they're trying to help you.
I am not a doctor. This is my personal experience, not medical advice. Every case of IBD is different. If you have concerns about your treatment plan, talk to your gastroenterologist.
Track What's Happening
One thing that would have helped me make better decisions: having actual data about my symptoms.
When I was trying to convince myself that things weren't that bad, I was going on vibes and wishful thinking. If I'd been tracking my symptoms day by day, I would have seen the clear trend: things were getting worse, not better.
That's part of why I built Flare Log. When you can look at a week or a month of symptom data, it's harder to lie to yourself. The numbers don't care about your fear of prednisone. They just tell you what's actually happening.
And when you bring that data to your GI, you can have a real conversation about whether your current treatment is working—or whether it's time to escalate.
The Lesson
I learned this the hard way, but you don't have to: sometimes the thing you're afraid of is less scary than the thing you're avoiding it for.
Prednisone side effects are real. They're unpleasant. I'm not going to pretend otherwise.
But being hospitalized with a severe flare is worse. Chronic inflammation damaging your colon is worse. Losing weeks or months of your life to a flare you could have controlled is worse.
If your doctor recommends steroids, take a deep breath. Ask your questions. Then trust the process.
Your future self will thank you.
Track Your Symptoms
Flare Log helps you see patterns in your symptoms so you can catch flares early and have better conversations with your GI. No accounts, no cloud sync—your data stays private.
Download Flare Log