So there I was – waking up to the the first Crohn’s free morning in my life… It was surreal. Painful, but surreal.

I didn’t sleep much during the night – as advised by the nursing staff I did use the pain medication I had to get as much rest as possible, but with hourly obs… it was complicated.

Pain wise – I didn’t know what to expect going in… at rest – with my graded pain medication my level was at about 2 (no, I’m not kidding, but take into consideration how long I’d been chronically ill – our idea of pain is… different).  I was so ok – I was only on my slow release pain relief and Panadol – I didn’t need “the button” at all in the morning hours. While I wasn’t expecting to be in screaming agony – I did expect to hover around a “6” pain level on the day after. This surgery also marked my first experience with a catheda – as silly as it sounds it was something I was really nervous about – and while I could feel it there, it wasn’t painful – it was just “there”. 

The medical team came in at about 9am I guess – before visiting hours started. The had very little information on the surgery at that point – all they could tell me is that the results were positive and I came through the surgery well. I did notice that my gown had been torn – which I thought might have indicated my heart stopped (due to my newly found WPW). The doctor confirmed that my heart was fine and the cardiac team clogging up my room as totally superfluous. I must admit I was a little relieved. They floated on by and I drifted in and out of sleep until “shower and walk time”.

I think one thing I need to be clear about is that “shower and walk time” was only a little over 12 hours after I’d had 4 holes cut in my abs. But I was feeling so good – this hospital/surgery thing was a piece of cake….! That was until – I tried to stand up. 

You’d think as a person with a digestive disease would know about abs – hell I thought I knew about abs. I had no inkling of how much you use your abs… not even a thought…. My pain level went from 2 to 8 within 60 seconds… I hit the pain butting hard. I stood there holding on to my IV waiting for the pain relief… it didn’t come. What came instead was intense nausea…. by this stage I was clinging to the grab rail in the shower dry reaching (I hadn’t eaten in almost 4 days now)… Nurse S heard me and came running with Ondanzatron a powerful anti-nausea drug – by this stage my pain level had hit the upper reaches of a 9… I was crying from pain and I could no longer take the high-end pain medication because dry reaching with busted abs goes up there with the most painful things in the world. At this very fortuitous point, my husband walked in… I was a naked, shaking mess with a male nurse having to dress me… I was crying from the pain – and he saw me like that and it shocked him. I suppose this is why I didn’t want people around me – I didn’t want people to see me in this state… I hate people seeing me weak. Stocker didn’t know what to do or say – or where to look… I was (and still am) shattered that he saw me like that. 

I would love to say that was the end of my ordeal – sadly though, it wasn’t.  After all that, I had to spend time sitting totally upright – it was like torture, but I do understand why. If you are lying down for days on end you end up with a lung infection – lengthening your stay sometimes substantially. Considering it was now the 19th of December I wanted my stay to be as short as what was safe. I took it – I sat there, shaking and sweating, with tears uncontrollably running down my face – the whole time cracking jokes to keep my mind off it… my pain relief was just there but I didn’t want to touch it again. Sitting up hurt, but not as much as throwing up – I was back down to about a 7 on the pain scale and I could deal with that. I made 43 minutes in that position till I relented and was assisted back into bed – I think that was one of the worst things about the day after, you know – I had no independence. 

Back in bed for a while – the shaking and sweating stopped and I started to relax again. My pain level returned to about a 3 or 4 and I was ok. Due to the lack of sleep – I drifted in and out for the rest of the afternoon with my husband holding my hand till they threw him out – a little past when visiting hours ended. I can’t speak highly enough of the nurses there, they were my saviours… all so caring about a person they’d never met before… they all felt so sorry for me and to this day I can’t understand why? Sure the disease sucked and sure getting into remission sucked – but there I was, no bypass and only on a 3 or 4 pain score? It kinda felt like I’d won the biggest lottery of my life. 

Why have I told you about the pain? Not to scare you, no, not at all. To reassure you. The next day, just 24 hours after I crumbled into a mess and hit the highest pain score in my life, I got out of bed unassisted, I showered unassisted, I did 4 laps of the hall unassisted, without my pain score going above a 6. The only thing I needed help with is the new gown – you need a fricken engineering degree to work that shit out – I swear… the difference between day one and day two was so huge, I couldn’t put it into words… so I guess why I’m saying this is to manage peoples expectations – yeah – it hurts, but not for long. One day of pain and the rest is pretty smooth sailing? I paid that price, and I’ll do it again one day without hesitation.