I had surgery (sub-total colectomy and ileostomy) fairly recently (5 months ago). I appreciate everyone has a different experience, this is mine.
My operation was planned and I knew the date 3 weeks before so had some time to get my head around it. I’m not sure if that was truly beneficial as I don’t think there’s anything that can really prepare you for what’s ahead and we all cope differently.
The days leading up to surgery were tough. I was distracted and rather dysfunctional. I had been on steroids for months and they were doing their thing of keeping me well whilst also making me bloated and emotional. The best advice I was given was to be at peace with my decision. I had taken months to reach that decision and it was time to trust in the process that led up to it. So I did. I did a few things to get my house in order, just in case. That’s not because I’m a pessimist, far from it. I just didn’t want my family to have more of a headache than they needed to if something went wrong. Major surgery isn’t something to be blasé about, of that I am sure.
Surgery day my brother and sister in law took me to the hospital. I was surprised how calm I felt. Then all of a sudden the time was there and I had to say goodbye. Yes there were tears and I think in those few seconds I truly felt the weight of what was about to happen and I think they did too. Fortunately the surgical team were waiting and there was no time to ponder. I was away and into theatre prep, making jokes with the awesome team, even drawing a smiley face on my stomach for the surgeon and reminding them not to ruin my belly button piercing. Priorities right.
I had surgery, all went well and I was grateful to find they had been able to do it keyhole. It took a few hours longer than expected resulting in an anxious brother pacing the corridor, nagging nurses for information. I remember a moment in recovery then nothing until I was in high dependency and my brother was standing next to me. Apparently we both cried although I don’t remember that. I don’t remember much at all in truth, just snapshots.
I had a bit of a reaction post surgery and I was shaking violently and having layers put over me and on my head to try to warm me up – bro said I looked well attractive, that I do remember. Then nausea and an anti sickness injection that made me lose feeling in my face and I felt like I was slurring my words. I swear I was waving and calling to the nurses that I couldn’t feel my face but bro says I just laid there. Weird moments.
That night in HDU I was wired up to various monitors and had a bed that massaged to keep my circulation going. That was most annoying, it had about 4 different settings on cycle and only one that was comfortable. Over the course of the night I came to look forward to that one setting. The night was apparently eventful. I was clearly very much in a slumber as I stopped breathing multiple times. I don’t recall any of that apart from snapping at my nurse Joe that they needed to turn off the alarms and flashing lights as they kept waking me up. The irony. I think Joe gave up doing anything else and eventually spent the night sat at my side. My only other memory is waking up and telling him it was a bit stalkerish that he was sat looking at me whilst I slept. Joe is a bit of a saint in my opinion.
This is me, a few hours after surgery. Looking pretty good minus the toxic colon.
The next morning my nurse came and took at look at my newly formed stoma. I didn’t want to look. She was blunt thankfully and said you’re going have to look at it later when they get you to empty it so you might as well look now whilst I’m here. She talked it up and told me I had a pretty little stoma. Never one to turn down a compliment I took a look.
I was got out of bed much to my surprise and after a couple of protests. The persistence of the nurse got my enthusiasm up and I walked out of HDU and down the corridor to the ward bed. She followed me with a wheel chair and I used the railing but I did it. I was stunned and a little bit chuffed that was possible the day after surgery. I had pain yes, it was like a bad stomach ache but I took the drugs and my pain was managed well.
I don’t recall much about the rest of that day other than feeling very vulnerable out of HDU. As she left me my nurse said ‘push that button, people will come. Let them know who you are, don’t be invisible’. Bloody good advice that.
I wasn’t permitted to eat for a couple of days and I wasn’t rushing to eat either. At the end of day two I was given something to eat. I was nervous about how my body would react and didn’t really have much of an appetite. That said jelly and ice cream has never tasted so good 🙂
I ticked along the day after, don’t recall much at all. The day after that was a different matter. I had a huge emotional crash and I cried constantly. Anyone who came to speak to me got unchecked snot and blubbering and I was powerless to do anything about it. For me, expressing that vulnerability was unthinkable yet here I was, all over the place. Looking back I think this was the day I started being completely open and honest with myself and subsequently with those dear to me. I haven’t stopped since and it’s been utterly liberating (but that’s another blog post).
I was blessed to have an incredible nursing team around me. Actually everyone was amazing. They all got to see me cry and it was ok. I had two days of this meltdown and on the second day when my stoma nurse came to visit I was hiding under the bed covers literally. I’m 46. She was great and understood exactly where I was at and it was then that I learned that many people hit a low a couple of days after surgery. I was given a little diazepam and that along with some good old nursing, just as it should be, I started to move out from under that cloud (and the bed covers). There was a particularly emotional moment, I was crying hard and a nurse reassured me that everything was going to be ok. Through the snot I said thank you and that I’d be back. That was the moment my stoma earned his name, Arnold.
If it wasn’t for the proper nursing I received I’m not sure what tangent my journey would have gone on. A tough subject in todays political climate but nurses having time to actually care, support, talk was the one thing that got me out from under that cloud. I don’t think nurses get to do that nearly enough these days and it’s a shame I feel that I got lucky with the nursing care that I received. I’ll stay off my soap box on that one for now but it is important. This is life changing major surgery and every aspect of care was critical to me having a successful outcome.
Over the next day or so I was shown how to empty and change my bag with a couple of nurses coming along to learn themselves. I would have thought that I might have been embarrassed by this but I really had been stripped bare of that thought even entering my head. I was grateful that they wanted to take an opportunity to learn and was more than happy to share those moments with them.
My abdomen was really quite sore and I was very cautious about moving around, particularly if I sneezed or coughed when I would grab a pillow to my stomach which made things much easier. I did get taken by surprise just the once. I was getting out of bed to go to the bathroom. Just at that moment I got a tickle in my throat and coughed unexpectedly. The result, an uncontrollable bladder! I never made that mistake again.
That was day five and I was ready to go home. I’d reached the point when being hospital was no longer a benefit and it was time to start doing things for myself and getting to grips with my new life with Arnold.