The first week of having your stoma can be scary. Not only have you had a major operation, you have to come to terms with having a bag and learn how to live with it. It’s a lot and can be incredibly overwhelming.
I think one of the scariest moments was waking up from operation. Because I was a carrier of an infection, they woke me up in the actual operating theatre (luckily there was no blood anywhere and it was all clean). The first thing I saw was light disk thing and, being the drama queen I am, I thought that I’d died. I hadn’t, in fact I’d had a very successful op but it was a little daunting. The second thing which happened was I was sick. I don’t remember much apart from waking up and slurring I’m gonna be sick. This is completely normal apparently and a side effect of anaesthetic but apparently you can ask for anti-sickness before you go under to help (which I found out after!).
Once you’ve come round, you stay in recovery for a bit before you’re taken back to the ward. I think I was there for about 2 hours but it’s all a little hazy. That’s the thing about anaesthetic, it plays with your mind. You’ll also most likely be on a morphine drip which you control to help with the pain. I had mine for about 3 days but I think it depends on you. I really didn’t like being on morphine so I wanted to be off it ASAP.
The first day post op is a bit of a blur. It’s likely that you’ll have someone from physio come to meet you and get you out of bed. It’s crazy how difficult it is just to get out of bed but if you persevere, it all comes back to you within a few days/weeks. After my second surgery, I had low blood pressure and felt so dizzy walking the next morning and it felt like I was never going to walk again (did I mention I can be a drama queen) but I had a go in the afternoon and it was a little easier. The key is to keep trying and do little bits often.
I wanted to see the bag as soon as I woke up and was fully conscious. The first bag they put on whilst your in surgery is a clear one so they can monitor the wound and output. It’s so strange seeing the bag for the first time, I remember it not feeling real but being completely fascinated by it. I was shocked though because I woke up to have 2 bags. I had been told this might happen but I’d never really listened or taken it in. My second bag is on the opposite side to my stoma and is a mucous fiscula which was very active at producing blood till I had it removed. I’ve written a little bit about mucous fistulas before here but let me know if you want to have a dedicated post on them. Everyone has different reactions to seeing their bag for the first time; some are like me and are really interested by it and some people really struggle to look at it at first. There is no wrong way about this and it can be hard for everyone. Just remember, your stoma will (hopefully) make your better and has most likely saved your life.
One of my biggest fears was the pain I was going to be in post op. I didn’t think I was someone who could really deal with pain and was really worried about how I was going to cope. Like I mentioned before, when I came round I was on a morphine drip thing. There was a button (which I kept tight hold of) to control how often I gave myself it. Don’t worry though, it’s set so you can’t give yourself too much! I think you can press it every 8-10 minutes but I’m not 100% sure on that one!
The pain, for me, was nowhere near as bad as I thought it would be. I was so so lucky that my surgery was done keyhole so I don’t have a massive scar and I think it means you heal quicker too. Because I’d been in a lot of pain beforehand, and had been for a long time, I found it almost a relief. The pain post op was completely different to pre op – you could feel yourself healing which sounds silly but that is how it felt!
One of the hardest things about pain and pain management was coming off the morphine. Morphine played havoc with my anxiety so I was all for getting off it ASAP. I had my surgery on the Friday and came off morphine the following Monday afternoon however I did have one tremadol on the Tuesday which genuinely had me hallucinating; I think I have a very low tolerance for drugs! What I was never told though was the withdrawal symptoms. I kept waking up in the night, sweating and shaking! I was pretty freaked but I was grateful when I found out it was just withdrawal and nothing actually wrong with me!
Throughout my big hospital stay and surgery, I was determined to stay positive. I kept reminding myself that this had saved my life and overall was pretty optimistic about it. Till just under a week later, still in hospital, I started being sick. I had a rough morning, throwing up at 6am, and from there it got worse, emotionally and I broke down. I didn’t want the bag, I wanted to go home, I wanted to be ‘normal’. My friends were sitting their first year uni exams and I don’t think I’ve ever wanted to take an exam as much as I did that day.
Jill, my stoma nurse, came to sit with me all morning till my mum came and confided in me that they had been waiting for this day to come. Turns out, it’s very common to have one day where you’re incredibly emotional about it, however optimistic you’re being. Which, lets be honest, is completely reasonable and a good thing. You’ve gone through some major stuff to get to this point so it’s very normal to get upset, angry and emotional about it. My best tip for this is to talk. Whether it’s to your nurses, family or a therapist. Talk about it, air your emotions. I genuinely think that’s one of the reasons I’ve been able to cope long term, because I don’t bottle it up.
Most people have their ostomy operations in two stages. The first operation, you will most likely still have your rectum. I think one of the strangest feelings was few days after my op getting a real urge to go to the toilet and then passing mucous. I was never told about it and I remember being so worried about the sensations that I quizzed my doctor on it. It’s totally normal and my stoma nurses advised me to just sit on the toilet and let it happen. Mine is still very active, and painful at times, so make sure you communicate this to your nurses and doctors because you may need to take enemas to help with inflammation if there is any.
There’s a chance that before your surgery you got to meet your local stoma nurses but if not, you’ll meet them post op. These people are absolutely amazing and are incredibly helpful when it comes to learning about your stoma from changing bags to emotional support. I asked my stoma nurses so many questions before and after my surgery (and still do now) and they’d always give really helpful advice. Whilst in hospital, I had daily visits Monday to Friday and then once I left hospital I had house visits for a month or so then I went to clinic and now I just go whenever I want to see them! They have you learning to empty your bag and changing it, making you practice all the steps. At first, it feels like it’s going to be impossible being able to change your bag. It seems to take forever and I thought I’d never be able to remember it all. Now, three years later, I can do it in less than 5 minutes. It takes time, but eventually you get the hang of it; practice makes perfect and all that!
When I came round from surgery, I had a bag of stoma supplies on the table next to me. Before I left, I had a huge stockpile and was given all the details on how to order them too and when. There are so many stoma products out there, it can be a little daunting. Whilst you’re in hospital, you’ll most likely be on clear bags but once home, you can have normal ones and it’s a case of trial and error to find the right one for you! (there will be posts soon on stoma products as well!!)
This may seem like a very strange heading but it was something which I found quite difficult to do at first. I lost a lot of weight before and during my stay in hospital and was malnourished. I had very little energy, had my belly cut open and then suddenly two bags on me as well. I found walking so strange! I couldn’t stand straight and had to hold the bags and did this weird shuffle kind of walk. One of my proudest moments has to be the day I walked to the door of the ward to greet my mum and dad! As you build up strength over the first couple of weeks, walking does get easier, it just takes time.
Like with everything with a stoma, it takes time to get used to things. It’s so daunting at first but remember, you’re not alone and it does get better. You start to get used to it over time and eventually, you sometimes even forget it’s there! Talk to people, reach out for advice and have a look at the amazing ostomy communities on Facebook, Twitter and Instagram!
Next weeks beginners guide is all about sleeping with a stoma so if you have any questions you want answering, let me know! If you have any questions at all, leave them in the comments below and I’ll do my best to answer (or point you in the direction of someone/where you can access the info!)