It’s hard to believe that this time last week I was just coming round from surgery. I had my (hopefully) final surgery for Ulcerative Colitis, called a total proctectomy, to make my stoma permanent. I thought that I would do a little recovery diary series to document my recovery mainly to show myself how far I’ve come! If you’re following me on instagram you’ll have seen that this past week, I’ve done daily updates on my insta stories but I’m going to go a little (or a lot) more in depth in this post!
What Is A Total Proctectomy?
Three years ago, I had a sub-total proctectomy which removed most of my large bowel. This total proctectomy took the rest of the large bowel, rectum & anus away. So basically, I had the rest of my bowel taken out, my bum sewn up and my ileostomy made permanent. The surgery took roughly 5 hours (i’m not 100% sure) and they were able to do it keyhole so instead of having one big scar, I have some additional polka dots instead. My last surgery was keyhole too and eventually you could only see them if you knew to look for them!
Because I have ulcerative colitis, I am now essentially disease free which is amazing. This should mean that once I’m healed, I’ll have no pain and I won’t be on any medication (see ya steroid enemas!) and I should have my energy back and be ‘healthy’. My surgeon actually rang today to confirm that the pathology reports confirm it is UC and that I made the right decision because the disease in the remaining bowel was really bad. It’s such a bizarre thing to get my head around, especially after being ill for so long.
Going into surgery, I was as healthy as I could be. I was eating well and was doing as much exercise as I could so I was in the best position going into surgery. Compared to my last surgery when I was incredibly ill beforehand, it has made recovery so much easier! Obviously, not all surgeries are planned (and boy do I know that) but if you’re going for elective surgery, I really recommend trying to be as healthy as you can be before you go in.
The night before surgery I cried like a baby. I wanted to throw the towel in and just go home and forget about it. I was terrified but my mum made me stay because we both knew that once I recover I should be healthy. So short term discomfort/pain for long term gain.
Whilst they were doing my surgery, they found a cyst on my ovary which they’d intended to leave but then they accidentally burst it! I’m not going to lie, part of me is glad it was burst because at least I don’t have to deal with the pain now if it had decided to burst! I also woke up with a wound drain. I’m not 100% sure what it was draining but it had something to do with letting my bum heal properly!
The first week after surgery
Coming out of surgery, I wasn’t quite as groggy as my first one but I did say some weird things and once mum sends me the video, I may post it on here for you all to laugh at!
Here’s a little snapshot of the first week of surgery. What I’m really surprised at is how quickly I’ve improved since day 1. I’ve gone from being hardly able to walk on Thursday to being able to go out for a coffee today (Wednesday).
Day 1 Post Op
Day 1 was horrible. I was disorientated from the anaesthetic and morphine, was being sick and had low blood pressure. When physio came that morning, I actually cried. Because of the low blood pressure, I was feeling really dizzy and genuinely thought I was going to pass out in the middle of the corridor. I had to sit down after a few steps and couldn’t catch my breath. I found it really scary, a) because I’m terrified of passing out and b) I’d come into hospital feeling relatively well and in a day I couldn’t do anything. They came back that afternoon and I was so scared to walk!! Luckily, my bp was better and I’d eaten something so my walking was a lot better than it was. When I say better, I mean I was still needing help walking but it was an improvement.
I also had forgotten how sore you feel! During surgery, they don’t half knock you about! Because of the nature of my surgery, they had to start operating on my front then, halfway through, turn me over so I’m lying on my front. My shoulders were in agony and I felt bruised.
Trapped wind in my stomach and body in general was another issue I had. I think this is a mix of the fact they fill you with air to see the different organs, a lot of things had been moved about and I hadn’t eaten in ages which always leaves me feeling very painful. The trapped wind feeling didn’t go for a few days and I’m still struggling with it a little bit as I get back into eating normally again.
Day 3 Post Op
Day three was a big day. After having a rough night with a bag leak, I had started the day feeling pretty low. However, my surgeon (who is the absolute best!), came round that day and said that I could go home the next day. Considering I had thought I was going to be in for a week, going home on day 4 WAS A BIG DEAL.
Once he’d said that, I had my catheter removed (which made moving a whole lot easier). As the catheter was gone, I put on my pwn PJs which was bliss after having a gown on. I also had all my cannula’s taken out and I came off the morphine fully. I actually sat in my chair for about 10 hours which was also pretty impressive seeing as my bum was sewn up three days ago (I did have a very comfy cushion on it though!)
Day 4 Post Op
Going home felt strange and surreal. I was happy because I got to be home with my family, my pets and actual nice tasting food. But there was also a bit of fear too – what if something was wrong? Aren’t they discharging me too early? I don’t know what I’m doing? That fear started to go as soon as I had some pizza and could eat nice food (I hate hospital food with a passion). I went home with my wound drain and I found it quite uncomfortable but I did eventually get used to it! Sleeping at home was a struggle as I couldn’t get comfy, especially with the drain which meant I had to sleep on my back.
Day 7 Post Op
After spending 2 days on the sofa watching telly, today was the day I got my wound drain removed! I was able to go to my doctors and one of the nurses actually removed it. I was surprised at how long the drain was. It was a little uncomfortable taking it out – I can only describe it as a mix between a light period cramp and the electric feeling when your cats whiskers catch the corner of your mouth.
Since it’s been out, my movement has been a little better. It’s probably down to not having to hold the drain bag whenever I moved. I also managed to go out for coffee and cake today which was fun! Its safe to say that today has been quite busy and I am feeling quite tired now!
So this is what my tummy’s looking like 1 week post op. I’m always amazed at how they do surgery keyhole. There’s actually another scar but it’s hidden by the stoma bag! The wounds are starting to feel itchy today, especially my belly button and my bum wound! It’s definitely taking a lot of self control to not pick at the glue but I managed last time!.
I’m planning on doing weekly recovery diaries, probably for the next six weeks or so. I also have another stoma related series starting soon too! I doubt the other recovery diaries will be quite as long but the first week has a lot of changes happening!
If you have any questions, please leave them in the comments or tweet/instagram me them and I’ll answer them directly and in next weeks blog post!