First of all: I am so sorry it has taken me so long to do this! Things have been fairly busy and I haven’t felt up to doing another blog post for a while – but I’m finally doing it!
As some of you may know, mainly from Instagram or word of mouth even, I am now home from the hospital in London – I actually got back a week ago but I’m trying to give myself time to adjust to everything and rest as well (which is something I have not been doing enough of!).
I thought I’d share with you my experience in the hospital and I will update on how I am today in the next blog post.
So Mum and I got to the hospital at 7:25am. This was followed by hours and hours of waiting – as you’d expect from a hospital! I saw a couple of the surgeons working with my main surgeon and the anaesthetist (who knew about EDS – making me a very happy patient) and, due to a complication in the surgery before mine, I had my surgery at around 3:15pm-ish. I know it was around that time as I remember looking at the clock when I was given the anaesthetic and the time was 3:09pm. The surgeons and anaesthetist were all very happy to answer any questions I had – even if I kept asking the same one over and over again!
I woke up in recovery at around 5:15pm (so I am told) and was told the surgery had been a success. I didn’t really feel any pain at that point – I think I was too out of it! Once they were happy that I was okay and didn’t need any further critical care, I was wheeled out of recovery (at about 6:00-6:30pm) and taken to the ward.
Once I arrived, I was taken into a room with two other women at the time (and there were 3 other free beds there) and I was asked if I could somehow shuffle onto one of the free beds – I, of course, couldn’t move so they managed to get a board to lift me onto a bed. I can’t quite remember much else about that evening but my mum stayed for about an hour before she had to get the train home. I do remember looking at my stoma and I wasn’t as shocked as I thought I would be – I just thought “Okay, cool, it’s there.” At this point, the bag I was wearing was transparent so I could see my new friend very clearly – and he was quite big (but this is normal)!
That night, I didn’t really sleep that much, I was asleep for a couple of hours then woke up for a couple of hours then fell asleep for a couple of hours etc. The nurse that was looking after my bay in the ward was lovely though and it was nice to talk to her. I did wake up suddenly at 2:00am due to my stoma making ‘popping’ noises – gas – which means it had started to work! So that was good news and as it kept ‘popping’ I decided to call it ‘Pops’. As it kept filling it up with air and I couldn’t really move, I had to ask the nurse if she could help me ‘drain out’ the air – just a warning, this does smell a lot but it is normal after surgery!
So the next day came around and nurses appeared with medication at around 8:00am and they also change the sheets on the bed for you and give you a chance to wash yourself. However, I was in quite a lot of pain and I was only given paracetamol since coming into the ward and the morphine had worn off, so I couldn’t move much at all – it was very painful. So they ended up washing me on my bed (felt a little awkward though but it was fine) and then somehow they managed to get me to sit on a chair – this had to be done so slowly though.
I kept drinking as much water as I could – as I was told to after they checked my blood pressure and said it was low (despite it always being low). So, naturally, I did feel as though I needed to go to the toilet as I was drinking a reasonable amount and my stomach had ballooned. I couldn’t walk to the bathroom so I was given a wheelchair with a pot under the seat, but I couldn’t…go – at all – even with running water going on. So they did a bladder scan which revealed I needed a catheter inserted and, before long, I was back in bed again with a catheter and (without being too graphic or anything) over a litre of liquid came out and, needless to say, I was much more comfortable!
So later on that day, my mum, dad and boyfriend (Phil) came to visit me – which was so nice. Some cards from home were given to me and Phil had made me an origami zebra, which was amazing. I have to say that having someone to come and see you in hospital is the best thing as it always made me feel so much better. Not much really happened as I was stuck in bed – feeling a little fed up and sorry for myself – but the company was really nice. The nurses had come in and kept asking if I wanted anything to eat but, as I hadn’t eaten for a year, I kept saying that I’d like to speak to a dietician first. Since I couldn’t even digest soups and smoothies before the operation, I was incredibly anxious and wasn’t too keen on the idea when they offered me soup there – they did understand though and I was grateful for that.
As it was the weekend, the stoma nurses weren’t working which, again, made me a little anxious about getting my stoma and bag checked but I was assured by the ward matron that all of the nurses there are trained in stoma care. I think that the worst part of my hospital stay was that following night as I was in a lot of pain and I was just given paracetamol (both orally and through a cannula, on a drip). I ended up crying at about 10pm and then they gave me three lots of strong medication all in one go. I did sleep very well that night – which is always good!
The next morning (Sunday), I woke up feeling much better – still some pain from the operation though, don’t get me wrong! It was much more manageable with paracetamol. Later on, after my bed sheets got changed and I was sitting in a chair (which is quite an awkward position when you have a catheter) the stoma nurse, who I had met a few months before, appeared – and I was very happy to see her. She then taught me how to change my stoma bag (and I was given an opaque bag), as well as checking how my stoma was and got some nurses to take one of my two cannulas out, which felt really nice. She also took my catheter as well! Already, I felt so much better. At this point, my mum came into the room and I beamed at her with my new, opaque bag and being catheter-free. Not long after, I managed to walk to the bathroom – as I’d drunk a reasonable amount of water – I turned the tap on – and success! I came back to my bed and told my mum the good news – maybe a little too much information but I was very relieved.
Now that I could just about walk, I got a sense of independence back as I could sort myself out in the bathroom without having to rely on a nurse to help me out. Later on that day, after talking to my mum about getting back into eating, I braved one of my Ensure Juce Nutrition drinks and it was all okay! (I had not had any of my previous medications for a couple of days, ie. laxatives.) I also did a few little walks up and down the ward as being mobile can really help with keeping your body fit for a good recovery (but you can’t overdo it). It was very tiring and I was very out of breath – it’s amazing what difference a day and a half in bed after an operation can do to your fitness!
The day after (Monday), my mum came along with my dad and my uncle – who I hadn’t seen in ages – and as the working week had begun, things were a little more busy in the ward. Again, I asked to see the dietician and I was told that I will see them on the next day (after being told I’d see them on Monday!). But mum had brought up a variety of other ‘foody’ bits, such as almond milk, chocolate almond milk, Alpro puddings, peanut butter powder (that you can make into a peanut butter milkshake). Basically, I had dairy-free milky things that are easy to digest. On this day, I had almond milk, an Ensure Juce drink, which was all fine – and this was later followed by my ‘peanut butter milkshake’ – which I couldn’t have pre-surgery as my body wouldn’t digest this, even though it wasn’t thick! So this was a good day as I could walk, I was wearing my own nightie and I had something which I hadn’t had in ages!
The day after though (Tuesday), was my most successful day in the hospital. I had, not one, but two of the Alpro puddings – vanilla flavoured and salted caramel flavoured and they were both absolutely delicious! I almost cried, I have to be honest. These are basically yoghurt consistency for those of you who don’t know, just to say. And yes, my stomach didn’t hurt and my body handled them absolutely fine! So despite not having seen the dietician yet, I was doing pretty well.
I was then told that the dietician would see me on Wednesday – which did leave us in a bit of a dilemma as I was supposed to be discharged on Wednesday and my mum only had train tickets to London until the Tuesday (we got cheap advance tickets for her!) as my parents were going to be driving up on Wednesday in order to take me home. So my stoma nurse and surgeon, who checked on me each day, seemed to be happy with my progress and were fine with me going home on Wednesday, but this hadn’t been officially confirmed. So we took a risk and my parents drove up to the hospital the next day and I was told that if the dietician was happy with me and confident that I will be okay with my diet, I will get discharged!
Mum and I had drawn up a rough weekly guideline of how I could move on from soft foods, to semi soft foods etc. After waiting for the dietician for a couple of hours, she came along and talked to my parents and I about the basic dietary guidelines – both with my ileostomy and with my gastroparesis. This basically means that I need to have low fibre (with both of the conditions for 6-8 weeks at least) and low fat (very important for gastroparesis). After having spoken to the dietician, she was happy for me to go home that day!
So we got my discharge letters and off we went. Walking out of the ward was weird enough, but when I got outside – I was ecstatic! I had been looking out the window at the gorgeous, sunny weather and it felt incredible to finally feel it for myself.
Two and a half hours later, I got home. I was over the moon!
A few things I learnt at hospital:
- Blood pressure, heart rate and temperature are taken regularly throughout the day (seems obvious but I didn’t know this)
- When you are in pain – ask for some medication, don’t just assume they’ll give it to you – I learnt this the hard way!
- If you aren’t walking much, they will give you blood thinner injections each night to prevent blood clots – these can either be in your arm or stomach. Do not get it in your stomach – it hurts, a lot!
- Be persistent but patient – I did have to ask for the dietician several times but they do have a lot of other patients to take care of. Don’t worry, they won’t forget – just occasionally ask/remind them and be patient as there are lots of patients!
- Be kind and considerate – patients can be in distress and/or in a lot of pain and can be very tired – it helps if visitors don’t cause a lot of chaos or noise! This also applies to nurses as they have a lot to deal with everyday and they are doing their best.
This is a long blog post, so I’m sorry about that – but I suppose it makes up for the long absence of posts from me!
I am almost a week out of hospital and I will do another post in a couple of days (I promise)!
I hope you’re enjoying this beautiful weather 🙂