Changing Attitudes

13.06.16

I stared down at the box of tablets in some sort of disbelief. How did it get to this, needing to take anti depressants?

It’s week five of my post op recovery. I had surgery in mid- May on my bowel and to remove a cyst on my ovary. Things were going well; I was healing from my incisions and I was getting back to a normal diet. Then two weeks ago, things took a horrible turn. I was sick. On and off for 36 hours. I honestly haven’t felt well since. No one can tell me if this is normal or if this is to be expected and will pass or if this is something on a slow simmer than I need to get checked out.

Since then I’ve numerous bouts of being able to eat well and wanting nothing but water. Both make me feel uncomfortable inside because they are creating so much pressure on my now-slightly-emptier abdomen. (They removed 30cm of Crohns ridden small bowel and a golf ball sized cyst on my left ovary; there is BOUND to be space) Some days – usually after a couple days of pain – I sit and wonder if this is worse than before the operation? Honestly? It is. I wish in these moments that I’d never had surgery. That I’d pushed them to pull the plug on the Vedolizumab and go for the clinical trial in Nottingham. I can’t do that now. I’ve had surgery.

I’VE HAD SURGERY.

I keep forgetting that, in its entirety. But I don’t ever forget about it. Because it hurts so much. My incisions itch and pull. My abdomen is still swollen. I feel sick every morning. Painkillers are useless. I’m frustrated that after over a month, nothing is better.

This is what I feel my family and partner feel too. That I should be better by now. I had surgery. Isn’t that a magical cure? It’s suppose to help not make things worse. Yeah, I thought that too. I hide how upset and angry I am about that. I suppose that’s why I broke down in front of the doctor, and she then asked about my emotional health. I tried to explained between big wet tears and all she could recommended was anti-depressants. For a month, then come back for a review okay? By then you’ll have seen your consultant, have some answers and your results. Maybe the hope is that by then I will have improved. Hope so.

03.02.17

I remember coming home that afternoon with the prescription in my hand. Anti-depressants. Was I depressed? Wasn’t I just frustrated and annoyed? Are those two things completely different or interchangeable? That appointment made me more confused and lost than before. I felt like no one was listening to me, and at this point, no one was. I had to be readmitted to the hospital three times before I would be taken seriously. I was depressed; I just wanted to be fixed, I didn’t need ‘those’ pills.

I was hopeful that my Right Hemicolectomy would help me. But all it did was cause more problems; problems that no one expected or believed were happening. They had to take my colon out to save me from more hell. It was that body part that was always holding me back.

Do I feel grateful for my ostomy, considering how I came to have one?

It wasn’t quite planned, or was it quite an emergency. I knew it was happening; I was very sick – the PICC line and NG tube were evidence of that – but who wants to be told you need an organ removing? Those ten days of waiting for surgery; being fed through a line going into my heart, dealing with the fact I would have an ostomy, let alone how I would cope with one… it was the longest ten days I’ve ever known. They now feel like a lifetime ago. I took photos of my time before surgery because I knew I wouldn’t believe it happened.

Those ten days – plus many more – made me into the patient I am today; the patient I always wanted to be, the one I knew I had to become. I didn’t fight my surgeon, nor my consultant or IBD nurses. I let them cut me open and give me Pricilla because I knew I needed it. I would suffer more if I didn’t choose it. Yes, choose it. It was still my choice, down the last minute before they anesthetised me. It was my choice. Which makes me so confused when I love and hate my ostomy.

I’m stuck in that middle ground of sort of having my ostomy planned, but still waking up with one was a shock. Add in to that, how well I have recovered and now how I’ve even gone into remission with it. It is just pure bonkers. When I think back to my abdomen without scars, without the bag, when it was flat and disease ridden… it feels like another person’s life. This life feels like someone else’s. And when I think about the fact that Pricilla is here for the rest of my life, also gives me the feeling that this life is someone else’s. I need to get to terms with that, make peace with it, realise the reality of that fact.

21.03.17

I see my consultant today, the first time since Christmas, just before I got the call to tell me I am in remission. I have a lot of hope for today’s appointment but I also have a lot of fear. Accepted fear, because I know I need to advocate for myself.

I never once doubted that advocating for myself and my care was needed. It always has been, my case has had its moments of being utterly confusing and downright depressing. But those times are way behind me, long gone when I consider how well I feel right now. How well I have been able to recover from surgery, how much more I am capable of in seven short months.

Those feelings of ‘this life isn’t mine’ have faded but not been erased. I don’t want to erase something that keeps me present. Feeling as if this is someone else’s life, that this – all of what I am doing – is someone else gives me purpose. This someone else is the new me.