“Time moves slowly but passes quickly.”
That can be said for my recovery from surgery. I can’t quite believe its been a month already but in the same thought I can believe it. I’ve been experiencing recovery in real time and taken each day as it comes. It hasn’t been easy – but I knew it wouldn’t be – but its been better than my last experience of recovering from surgery.
- Not needing any pain relief since being discharge.
- Being able to manage my stoma – when its changed size and the output has changed consistency. Even the frustration when leaks have happened.
- Made it to a family celebration.
- Not panicking when my scar opened up and serous fluid leaked out, not once but twice. Antibiotics needed, on my second round after the first lot wasn’t strong enough.
- Taking all of my doses of steroids without fail.
- Managing to do some shopping.
I haven’t had many negative days when I’ve hated my situation and wanted to go back to being “normal”. If I am honest, I was expecting to spent time once I got home, struggling to cope with my bag and what it meant. But I’ve been able to occupy myself with going out to places with the boyfriend and spending time with him, that I’ve not really thought of the enormity of what’s happened. I’ve had a few wobbles; when I’ve hated my stoma and the fact that I can’t go back to having my colon but when I think about my diseased colon causing me all that pain since June, I know the right decision was made. I just have to make more peace with it.
My belly has changed in the weeks I’ve been home. My scar has healed and the scabs have come away, leaving me with a pink line up my tummy, around my belly button. Its neat but the weight I needed to put on has gone straight to my middle, resulting in my scar dipping so I have a ‘front butt’. Next to my bag it doesn’t look too bad… but I know I will need to exercise once I’ve been cleared by my surgical team.
Managing my diet is by far the most complicated part of having an ileostomy. Balancing my fluids, salts and sugars, along side my actual intake of good nutritional food is challenging. Some days I am good and others could be better. Keeping hydrated is by far the hardest part of this for me. I don’t want to become dehydrated because it just messes with the whole system. I can’t now ever neglect to look after and care for myself. So as much as I want to forget about my chronic illness and its impact on my life, I need to be conscious about maintaining being well. I’ve never had that before: 1) being able to ‘forget’ about being sick and 2) making sure I stay well. I’ve never felt this well in all the years I’ve been diagnosed with Crohn’s disease. So it feels very foreign; I keep expecting it to end and I become sick again. The closest I get to that is when I become fatigued, maybe once a week. It’s all so new and every day I wake up feeling an improvement on the previous day… that’s never happened before. And its not the outcome of a medication – like Humira, when I would need to take it every two weeks and the last couple days before the injection I would really struggle – which is still amazing. I mentally pinch myself to make sure its not a dream.
I’m still getting used to everything – being colon free and what that means, the mental and physical impact of my ileostomy, how my body has changed and the responsibility of caring for myself – but I’m doing okay. I’m still taking each day as it comes and trying not to see or plan too far into the future; at least until I’ve seen my surgeon again next month.