Living with moon face, fluid retention, and the emotional whiplash of IBD treatment
When you’re in a flare, you’ll do whatever it takes to get your life back, to get out of pain, to stop the bleeding, to stop running to the bathroom every 20 minutes. For many of us with IBD, that “whatever it takes” ends up being steroids. They work. Fast.
But no one really warns you what comes next.
Because while your gut might finally calm down, your face, your mood, your body… can change in ways that hit just as hard.
So What Actually Is Moon Face?
It’s one of the most common side effects of steroids like prednisone or prednisolone.
It’s caused by fluid retention and fat redistribution, especially around your face, jaw, and neck.
Your cheeks puff out. Your jawline disappears. Your whole face can start to feel rounder, heavier, even unfamiliar.
It happens gradually, and then all at once.
You might see it in a photo and think: “That doesn’t even look like me.”
And it’s not vanity. It’s not about weight. It’s about identity and grief.
Because suddenly, you’re carrying a face that doesn’t match how you feel inside. And worse? You didn’t choose it.
Why We Still Take Steroids (Even Knowing All This)
Steroids are powerful anti-inflammatories. When you’re in a serious flare, they work fast to reduce inflammation and stop your immune system from attacking your gut.
They’re used to:
- Calm symptoms like diarrhoea, bleeding, pain, urgency
- Prevent hospital admissions
- Stabilise you long enough to start or adjust long-term treatment
They’re often prescribed short-term, and the goal is always to taper off as soon as safely possible.
But even in a short window, the side effects can hit hard.
The Side Effects No One Talks About Enough
Moon face is just one piece of it.
Here’s what often shows up alongside it:
- Swollen hands, feet and belly from fluid retention
- Crazy hunger! The kind that doesn’t switch off
- Insomnia and that wired-but-exhausted feeling
- Acne, oily skin, facial hair
- Stretch marks and skin that bruises easily
- Rapid mood swings, anxiety, or emotional sensitivity that can feel like you're losing your grip
- Muscle weakness or feeling “heavy” in your own limbs
- Weight gain in places that don’t feel like your body
Sometimes you notice them one by one. Sometimes they hit like a wave.
And while your outside is changing, inside you’re trying to remember this is necessary.
But that doesn’t make it easy.
What It Feels Like to Live with Moon Face
There’s no polite way to say it: it’s confronting.
You don’t recognise yourself. You look at old photos and feel like a stranger to your own timeline. You get dressed and nothing fits the way it used to. You avoid selfies. Or you post them anyway and overthink them for hours.
It’s a body image crisis layered on top of an actual medical crisis.
And you’re constantly trying to hold both:
I’m grateful these meds are helping.
I also hate what they’re doing to me.
People might not notice it as much as you do, or they notice and don’t say anything, or worse, they do say something. Either way, the weight of it is yours to carry.
Will It Go Away?
Yes.
In most cases, moon face and other visible steroid side effects fade as you taper off the medication.
The fluid retention reduces. The fat redistribution settles. Your face softens back. Your body returns.
But it can take time and everyone’s timeline is different.
If you’re on a longer course or your symptoms feel severe or concerning, don’t hesitate to speak with your gastroenterologist or Doctor.
They can monitor for complications, and support you with any mental health changes along the way.
It’s OK to Mourn What You See in the Mirror
You’re allowed to feel shaken.
You’re allowed to not love the way your body is handling it.
You’re allowed to grieve what feels lost, your face, your confidence, your old energy.
But please know this: you haven’t done anything wrong.
You’re not weak. You’re not vain. You’re not “obsessing over nothing.”
You’re going through something massive and just because you look “different,” doesn’t mean you’re not still you.
This isn’t forever.
And you’re still allowed to take up space, swollen cheeks, mood swings, puffy eyes and all.
Final Thoughts
Steroids aren’t evil. They’re a necessary tool in IBD management.
But the emotional load that comes with them is very real and often overlooked.
Moon face isn’t just a change in appearance. It’s a change in how you move through the world, how you show up in photos, how you speak to yourself.
If you're in the middle of this, you’re not alone.
There’s nothing wrong with your body.
There’s everything right with fighting for your health.
And there is absolutely no shame in looking different while doing it.
Disclaimer:
This blog is for educational and peer-support purposes only. It is not a substitute for medical advice, diagnosis or treatment. Always consult your healthcare team about medication side effects or concerns. In rare cases, steroid use can lead to serious complications including adrenal suppression, vision changes, or mood-related conditions. If you’re experiencing any severe or persistent symptoms, contact your doctor immediately.
