When I was preparing for my ileostomy surgery, I did what most people do - I researched the medical facts, read about the procedure, and prepared for the physical aspects. But looking back, there were much deeper truths I wish someone had shared with me. Not the clinical details, but the real, human experience of what it means to go through major surgery.
If you're facing surgery - any surgery - these insights could transform your entire experience from survival mode to actually setting yourself up for success.
1. Make Sure You Have an Advocate (It's Harder Than You Think)
Everyone told me to "advocate for myself," but here's what they didn't mention: when you're in pain, scared, or not fully lucid from medication, advocating becomes incredibly difficult. Your brain isn't working at full capacity when your body is under stress.
The solution isn't to advocate harder - it's to bring backup.
What This Looks Like:
Bring someone who can speak up when you can't. This should be someone who either has been through something similar or has taken the time to understand your condition. They don't need formal medical training - they just need to understand your situation well enough to ask the right questions and push back when something doesn't feel right.
Your advocate's job is to be your voice when pain or medication makes it hard to think clearly. They can take notes, ask follow-up questions, and help you process information when you're not at your best.
2. Surgery Isn't the End - It's Actually a New Beginning
I went into surgery thinking about everything I was losing or leaving behind. The life "before." But here's what nobody prepared me for: surgery can actually be the start of something better.
Yes, it's scary. Yes, there will be new challenges. But very often, the problems you face after surgery are actually better problems to have than the ones you had before. When I look back now, my post-surgery challenges were so much more manageable than living with my previous health issues.
Mindset Shift:
Instead of thinking about what you're losing, try to stay curious about what might become possible. You don't have to be grateful for needing surgery, but you can be open to the possibility that your life after surgery might be richer in ways you can't imagine yet.
3. Trust Your Doctor, But Challenge Them When It Doesn't Feel Right
This is a delicate balance, but it's crucial. You should generally trust your medical team - they have the expertise. But you are the expert on your own body and experience.
When something doesn't feel right, speak up. Do it respectfully, but do it directly. Be factual, be clear, and if necessary, bring evidence (photos, logs, specific examples).
If You're a Woman, This Is Extra Important:
Unfortunately, medical research has historically been based on male subjects, and women's symptoms are still often dismissed or minimized. If you're a woman, you may need to be even more assertive. Come prepared with facts, document everything, and don't be afraid to get a second opinion from a specialist if something doesn't feel safe.
4. Pack Like You're Moving In, Not Visiting
I packed for surgery like I was going away for the weekend. Big mistake. Pack like you're setting up a temporary home, because recovery is about comfort, not just survival.
Bring everything that makes you feel human:
- Comfortable clothes (not just pajamas)
- Your own pillows and blankets
- Laptop, tablets, chargers, and extension cords
- Downloaded movies, audiobooks, playlists
- Favorite snacks (once cleared by your team)
- Photos or items that remind you who you are beyond being a patient
This isn't about being high-maintenance - it's about maintaining your sense of self during a time when everything feels medical and sterile.
5. Recovery Is a Marathon, Not a Sprint - And That's Actually Good News
I expected recovery to be linear: bad, then better, then good, then great. Reality was much messier, with ups and downs, setbacks, and moments of progress that felt frustratingly slow.
Here's what I wish I'd known: recovery isn't about getting back to 100% as fast as possible. It's about gradually building a new normal, and that takes time.
The Real Recovery Mindset:
Don't let perfect be the enemy of okay. Start living your life as soon as you can, even if you're struggling a bit. Recovery isn't limbo - you can still enjoy things, connect with people, and find meaning in your days, even when you're not at full strength.
Some days will be harder than others. Setbacks will happen, and early on they might feel severe. But as time goes on, you'll start to see the bigger picture, and even setbacks won't derail your overall progress.
The Deeper Truth
Surgery changes you, and that's not necessarily a bad thing. You'll discover strength you didn't know you had. You'll develop new perspectives on what really matters. You'll become someone who can handle hard things.
The person you become through this experience will be different from who you were before - not better or worse, just different. And very often, that difference includes wisdom, resilience, and a deeper appreciation for life that wouldn't have been possible any other way.
You're not just surviving this - you're becoming someone who thrives through challenges. That's no small thing.