When you wake up from major surgery, it can feel overwhelming, to say the least. For many of us, including myself, stoma surgery is life-saving, but that doesn’t mean it isn’t a huge mountain to climb. You wake up and bam, your body is different, your routine is different, and the way you connect with yourself has changed overnight.
My stoma, ‘Stacey’, was formed back in 2011 when I was 19. If surgeons had left things even a few hours longer, I was told I wouldn’t be here. So, while I shout from the rooftops that Stacey is my lifesaver, I also know the raw, real, and sometimes overwhelming reality of trying to find your ‘new normal’ when your body feels like it’s been through a battle.
Learning to tune back into your body after surgery isn’t just about physical recovery, it’s a mental journey, too. In this blog post, I’m going to share my personal experience of all things recovery after ostomy surgery.
This is just my experience, so it’s important to remember that everyone is different, and as always, if you have concerns, it’s best to contact a medical professional.
Please note that this is with regards to my experiences living with an ileostomy and using a one-piece, drainable ostomy bag. Let’s get started.
It’s a marathon, not a sprint
I know how frustrating it is: you want to be back to your old self, or the best version of your new self, right away. But your body has been through so much trauma. Whether you’ve had an ileostomy like me or another type of procedure, your insides have been moved around, and they need time to settle.
In those early weeks, my exercise was literally hobbling from the bedroom to the bathroom. And do you know what? That was enough. One of the biggest lessons I’ve learned is that patience isn’t just about waiting, it’s about how you treat yourself while you’re waiting. As frustrating as waiting feels at the time and sometimes, boring!
If you’re anything like me, you might look at others on social media and feel that pressure to be up and running within weeks. But please remember: your journey is yours alone. No two people heal the same way. It’s so important to take things at your own pace to avoid injury and give your body the rest it’s practically begging for, you’ve been through a lot and you still are. Talk to yourself how you would a friend.
Recognising your limits and respecting them
One of the hardest things for me to deal with, even years later, is fatigue. And I don’t mean just feeling tired. I mean that bone-deep exhaustion where your body feels like lead.
When you’re recovering, your body is using every ounce of energy to knit itself back together. If you try to push through that fatigue to hit a step goal or ‘get things done’, you’re often just stealing energy from tomorrow. And the vital energy you need for recovery after surgery.
I’ve had to learn the hard way that recognising your limits isn’t a sign of weakness. It’s a sign of self-love for the body that just carried you and along with doctors, saved your life. If you feel that heavy, “I’m done” feeling, give yourself permission to stop. Whether that’s leaving a social event early or choosing a nap over a walk, it’s ok. You aren’t being lazy, you’re just choosing self-love, which your body needs.
Returning to movement: start slow and stay supported
I’m a big advocate for movement because of how much it helps my mental health. Now, when Stacey stoma feels a bit sluggish, a gentle walk can really get things moving. But gentle is the keyword!
When you do feel ready to start exercising again, and only after you’ve had the green light from your stoma nurse or surgeon, start much slower than you think you need to.
Here are a few things that helped me post-surgery and help me now while being active:
- Supportwear is a must: I always wear level 1 or 2 supportwear (like my high-waisted briefs or a waistband) when I’m working out. It gives me that extra bit of confidence and helps protect against hernias, which is something many of us worry about.
- The core check-in: Early days, I focused on exercises that use my core for stability (like squats) rather than direct abdominal crunches. Even now, over a decade later, I’m very careful with direct core work. But I’ve started to work on my core with the help of my health coach who has experience with people who have had abdominal surgery.
- Hydration, hydration, hydration: Especially with an ileostomy (and a high output stoma), we lose fluids much faster. I always use electrolyte tablets in my water when I’m moving to make sure I don’t end up feeling dizzy or wiped out, or have an isotonic sports drink.
Understanding the signs
Your body is constantly talking to you. After surgery, the signs might look a bit different that are telling you to slow down:
- Output changes: If your output stops or you feel crampy and bloated, that could be your body telling you to slow down or hydrate. As tempting as it is to gulp (and I still do) I’ve learned to ‘sip, don’t gulp’ my drinks to help my system absorb things better, especially if my output is liquid.
- The niggle: If you’re exercising and you feel a pull or a sharp pain near your stoma or your incision, that is your body’s red light. Stop immediately. There’s no prize for pushing through pain in your recovery.
- The emotions: Sometimes, the sign isn’t physical. If you find yourself feeling teary or frustrated, it’s often because your body is overwhelmed. Emotional recovery takes just as much energy as physical recovery.
Building a better relationship with yourself
For a while after my surgery, I struggled with my body. I’d gone from being a 7-year-old diagnosed with Crohn’s to a 19-year-old with a stoma. My weight was up and down from steroids before surgery, and I didn’t recognise the person in the mirror, or like her.
But I’ve realised that Stacey is an enabler. She’s the reason I can go to gigs, leave the house full stop, and spend time with my husband, Ben and our dog.
Tuning into your body means looking at your scars or your stoma and realising that it isn’t a mark of what you’ve lost, but a symbol of what you’ve gained. It takes time to trust your body again after it feels like it’s failed you, but bit by bit, you will get there.
Tips for recovery
- Keep a diary: Not just for food, but for how you feel after certain activities. It helps you spot patterns in your energy levels.
- Organise your space: I keep my supplies in a drawer unit in the bathroom so everything is to hand. Reducing the headspace needed for stoma care, which leaves more energy for recovery.
- Talk it out: Whether it’s your stoma nurse, a partner, a friend or the amazing community on Instagram (you can find me at @ibdwarriorprincess), don’t do it alone.
- Trust Respond: Having a reliable delivery service like Respond means I never have to panic about supplies. It’s one less thing for my brain to worry about.
Respond’s useful advice and support
Having a reliable routine with my ostomy products helps me worry less about ostomy life. Joining Respond has made my life so much easier. That feeling knowing my supplies will arrive every month, without me having to chase them, gives me one less thing to stress about.
Respond also has a wealth of educational and empowering blogs from other ostomates, including:
- Creating a stoma routine that works for me – by Alice
- Learning to feel confident in your body with a stoma – by Poppy
- Relationships after stoma surgery – by Keith
In summary
If you’re reading this and you’re in the middle of those tough early days post-surgery, please know that it gets easier. The routine that feels so overbearing right now: the bag changes, the skin care, the worrying about leaks, will eventually become as second nature as brushing your teeth.
Be gentle with yourself. You are doing something incredible just by showing up for your recovery every day. Listen to your body. It’s vital.
For so many, including myself, having an ostomy wasn’t the end. It was just the beginning. You can still live your best life, and honestly, my stoma enables me to live my best life.
You can message me and follow me on my stoma journey on Instagram: @ibdwarriorprincess
