I was 22 when I got my ileostomy. Fresh out of college, ready to take on the world, and then... this happened. If you're reading this and you're in a similar spot, I want to share the things I wish someone had told me back then – the real stuff that nobody mentions in the hospital pamphlets.
It's Going to Be Weird at First (And That's Normal)
Let me start with this: the first few weeks are just plain weird. You're going to stare at your stoma. You're going to be fascinated and maybe a little grossed out. You might even name it (mine's called Oscar). This is all completely normal.
The nurses will teach you the basics, but they can't prepare you for the psychological adjustment. One day you're emptying your bag and thinking "this is my life now," and the next day you'll forget you even have it. The emotional rollercoaster is real, and it's okay to feel all of it.
"Give yourself permission to feel whatever you're feeling. There's no 'right' way to adjust to having an ostomy, and your timeline is your own."
You Will Sleep Through the Night Again
I remember those first few nights, waking up every hour convinced my bag had leaked or detached. Spoiler alert: it hadn't. But the anxiety was real. Here's what I learned:
- Invest in a good nighttime routine – empty your bag before bed, even if it's not full
- Keep supplies next to your bed for the first month (you probably won't need them, but it helps with peace of mind)
- A small nightlight in your bathroom is a game-changer
- Your sleep will normalize, I promise
Finding the Right Supplies Takes Time
The hospital will send you home with a basic setup, but don't think that's your only option. Every body is different, and what works for your roommate's aunt's friend might not work for you. I went through probably six different bag systems before I found my perfect match.
Don't be afraid to call your ostomy nurse and ask for samples. Companies are usually happy to send you trial sizes. It might take a few months, but when you find your holy grail combination, you'll know it.
Some Things That Helped Me:
- Keeping a simple log of what I tried and how it worked
- Not changing everything at once – try one new product at a time
- Joining online communities for real user reviews
- Remember that your needs might change over time, and that's fine
You Can Still Do Everything You Want to Do
This is the big one. I spent the first few months thinking I'd have to give up swimming, traveling, dating, wearing certain clothes... basically everything that made me feel like myself. I was wrong.
It might take some adjusting, some creative problem-solving, and maybe a few extra supplies in your bag, but you can do it all. I've been to music festivals, gone backpacking in Europe, run half-marathons, and yes, I still wear crop tops sometimes.
"Your ostomy doesn't define what you can and can't do. You do."
People Are Generally More Understanding Than You Think
I used to spend so much time worrying about what people would think if they found out. The reality? Most people either don't care as much as you think they will, or they're genuinely curious and supportive.
You don't owe anyone an explanation about your medical history, but don't let fear of judgment keep you from living your life. The people worth having in your life will stick around.
Connect With Others (When You're Ready)
I'll be honest – I wasn't ready for ostomy support groups right away. I needed to process things on my own first. But when I did start connecting with other young ostomates, it was life-changing.
Whether it's online communities, local support groups, or even just one other person who gets it, having that connection makes a huge difference. You'll find your people, and they'll remind you that you're not alone in this.
Your New Normal Will Feel Normal
I know it doesn't feel like it now, but one day you'll be emptying your bag while talking on the phone and won't even think about it. You'll plan outfits around your bag without it feeling like a big deal. You'll make jokes about it with friends.
It becomes part of your routine, like brushing your teeth or putting on socks. You adapt because humans are incredibly resilient, and you're going to be okay.
Final Thoughts
If I could go back and tell my 22-year-old self one thing, it would be this: having an ostomy doesn't make you less than anyone else. It doesn't make you broken or limited or any of the things you might be thinking right now.
It makes you someone who's survived something difficult and come out the other side. And that's actually pretty amazing.
You've got this. Take it one day at a time, be patient with yourself, and remember that there's a whole community of people cheering you on.