Whether your surgery is planned, or taking place as an emergency, there’s a million questions churning around in your mind about what to expect. Each person’s experience will be different, however, these are some of the things that I wish I’d known before my colectomy surgery.
Disclaimer: I am not a medical professional, all views expressed are my own from my own experiences and cannot be taken as medical advice. If you’re concerned, please speak to your own medical care team.
A forenote to the reader:
This is a very scary time for you, and I want to reassure you that things will be okay. Whether you’re having stoma surgery as the result of a long-term battle with an illness, or it’s taking you out of the blue, it’s a massive process and it does take some adjustment. However, I can tell you that the results are so worth it. Independence, no longer being stuck in the bathroom and feeling generally a bit more well are all things to look forward in the not-so-distant future. You’re not alone, more than 20,000 people have stoma surgery each year in the UK. You’re in the best hands and I have every confidence that you’re going to be okay. Just hang in there.
Medical-grade stoma supplies
When you first come around, you’re going to see various pieces of stoma paraphernalia. The kit that they use to monitor your stoma in the first instance is very much medical grade and will not be something that you have to use long term. In my case, I had two very large clear bags attached to my stoma and mucus fistula, with various other ‘sticky bits’ on my abdomen. Later, when you start to become more mobile, the hospital Stoma nurses will come and talk to you, and work out what stoma supplies will best correspond to your lifestyle.
There are dozens of different styles, sizes, shapes and colours of bags available to you once you get your stoma independence outside of the hospital, and these will allow you to feel more like ‘you’ again. In the short term while you’re in hospital, they use the less nice-looking stoma supplies to be able to easily monitor things like your output, so just bear with as it helps the Doctors and Nurses a lot to see what’s going on.
Mucus Fistula – what’s that?
Depending on the reason and circumstances surrounding your surgery, you might end up with two bags attached to your abdomen, like me. Some people refer to it as ‘waking up with two stomas’ and it can be a shock. It’s important to understand the difference between the two, as it’s often something that doesn’t get clearly explained.
Bag 1 – your main bag – your stoma
This will be the way that your bowels empty so that you can go to the toilet from now on. You’ll either have an ileostomy (which means that your entire colons been removed) or a colostomy (this means that only part of your colons been removed). The main difference between the two will be what your output looks like. With an ileostomy (which is what I have) your output will be more liquidy, similar to an ice cream sort of consistency. Whereas with a colostomy, your output will be slightly thicker and resemble a more ‘ordinary’ bowel movement. This is simply due to how far into the bowel your food can digest before it comes out – of course less bowel = less time for you food to digest and more liquid. Your stoma will fill up quite often and so you’ll need your main bag to be a reasonable size to allow for this.
Bag 2 – a secondary bag – your mucus fistula
If your disease is severe, it may be the case that the little bit of colon that get’s left between your bum (rectum) and where the surgeon decides to cut to isn’t safe to simply ‘close off’ inside of you. In this case, it has to be rooted outside of you, to allow for drainage. Think of this hole being like the other end of where your (now) non-functional butt connects to. It isn’t connected to higher up in your digestive tract, unlike your stoma, therefore very little output comes through it. Instead of sticking out as a piece of working bowel, it usually looks more like a hole that resembles something like a belly button (think inwards instead of outwards).
Depending on your unique makeup and circumstances, your surgeon may place your mucus fistula in different places. I have heard of some being parallel to your main stoma – so effectively, one each side of your belly button. More recently, I’ve come across people being able to have them placed directly under your main stoma, so that all the output is caught in one bag (this is a great idea I think!). In my case, my surgeon chose to place mine very low on my stomach, in the crease between my belly and groin. There’s pros and cons to each of these placements – and the important thing is that you’re ok – but, if you get the chance to discuss with your surgeon, I’d recommend asking for it to be placed higher up, as once it’s in it can’t be moved to a different spot. For me, I find the placement on my belly awkward, as I not only have the crease of my stoma to content with, but also body hair, which makes for unnecessary hassle.
The good news with a mucus fistula is that it’s a LOT less active than your stoma as it doesn’t need to output that much. I find that I lose about a tablespoon of liquid per day through mine, but some find less or more. There’s loads of options for small and neat bags you can use with it and overtime, after your surgery you’ll find that it actually shrinks (more on that later in the post!).
Expect to be swollen
Something I was not prepared for after my surgery was how swollen my stoma was to begin with – it looked huge! This is due to the trauma that your intestines have been through and I’m pleased to say reduces massively over the weeks to come. In the first instance, the stoma nurses will encourage you to measure your stoma site each day (they provide a tool to do this!) before you cut the shape and size you need into your bag. This can be a bit fiddly, but ensures that the skin around your stoma is protected and avoids any leaks from happening.
The same goes for your mucus fistula – it starts of relatively large (mine was about the size of a one-pound coin) but quickly starts to shrink. Now 4 months on from my surgery, my mucus fistula is about the size of my fingernail – a lot smaller than where we started!
You might have quite a few tubes connected
After your surgery there is a lot for the hospital team to monitor, particularly if it’s been complicated or you’ve not been able to take nutrition on the lead up to it. When you come around and indeed for the first few days, it’s likely that you’ll have a lot of medical tech connected. In my case, I had various different things attached at one point or another, including:
– A catheter (which I was very grateful for, as my bladder didn’t respond well to the anaesthetic).
– A central line in my neck
– Two rectus sheath catheters in my ab muscles
– Cannulas in my arms
– Oxygen tube
– A PICC line
Some people may need additional add-ons such as a drain or an NG tube.
At the point you’re connected to all of these pieces of medical equipment, it can feel a bit claustrophobic. However, once you start to come around and show that you’re healing, they’re quickly removed and as they are, you become more and more comfortable. In the first instance, it’s just a relief to be awake and have everything being managed for you.
Wound types
Once again, depending on your surgery and the circumstances around it, you may have either a keyhole incision or a midline incision. It’s good to know a bit about both of these.
A keyhole incision is usually comprised of several entry points, where the surgeon is able to use tiny incisions to access and do the surgery. This is great from a wound healing point of view and leaves you with a lot less cosmetic damage than other types of incision, but also requires the use of more gas so that the surgeon can see what they are doing. I’ve heard that moving this gas in the days following can be painful.
A midline incision is one big cut from the top of your abdomen to the bottom, and allows your surgeon to see what they’re dealing with. This is often used in emergency situations, like mine. The benefit of this incision is that it gives your surgeon the full room they need to get everything sorted and there’s less need for gas to sit around. The obvious downsides include a much larger scar and more lengthy healing.
Confusion or anxiety
You’ll be on a lot of medication when you first come around, which is likely to make you feel a bit disorientated. Pain medication in particularly has a habit of making you sleepy and dazed, which can compound feelings of confusion or anxiety.
In the days following my surgery, I was struggling to get my head together and felt very worried about what was happening around me. This, I have discovered is normal and likely due to not only the trauma you’ve just been through but also your body working through all the medications.
As you start to ween off of all the things you’re taking, your head will start to clear and you’ll slowly feel more like yourself. Be patient with your mind and try not to worry, everything is progressing in the right direction. Even to this day, I still get moments where my brain isn’t working how I feel it should be, but that’s normal and recovery doesn’t happen all at once.
Hint: It can be helpful to let you family members know in advance that you might not be yourself. I found myself in mood swings that were out of character for me during the first few days and these can be a shock to friends and family if they don’t realise why!
You should have access to pain relief – use it
Chronically ill people are often averse to using pain medications for fear of being accused of becoming dependent – I know I was! I am however, sitting here and telling you to use what you’re offered. This is major abdominal surgery and it’s traumatic, even if you have had time to plan for it – so you deserve to give your body the proper time and comfort to heal.
In the first few days after my colectomy, I had access to a morphine pump, which I was really grateful for. This allowed me to self-dose myself with the meds I need (although prevents you from overdosing), and gave me three days of solid rest. Morphine in itself isn’t a particularly nice drug I find, and I was definitely hallucinating, but it did let me sleep and got me to a point of feeling more human.
After these few days with the morphine pump, I was moved over to IV meds, which I found to be more effective than oral medications for me. My digestive tract was still confused after everything that had happened, so taking meds via a cannula or PICC line was less stressful on my body as a whole.
I certainly am not advocating that you should take pain relief if you don’t need it, but I do think that it’s important to utilise what you can for those first few days at least and give yourself a head start at healing. You can always ween off of them, but finding effective pain management is something that will make your whole healing process easier.
Expect to be in hospital for up to 10 days
Once you’re out of surgery, a massive healing process has to begin and this takes its time. Usually, you’ll find that your bowels have ‘gone to sleep’ from all the trauma and so for the first few days you’ll be on a liquids-only diet. Once your stoma starts to show signs of output, soft and easy-to-palette food will be introduced, gradually building you up to a fuller diet.
Assuming that this all goes to plan and you don’t have other complications, it’s often about 10 days before you’ll be allowed home. Click here to read my blog post on food after stoma surgery.
Nausea and vomiting are common
It is common with this surgery to find yourself vomiting afterwards. I personally did on two occasions, but I understand for some it’s worse. This is due to your GI tract being sleepy from all the trauma and the mixture of medications sitting in your stoma and no processing like they normally would. It’s not pleasant, but your team can supply you with anti-nausea medications which help and if it gets unmanageable they can use an NG tube to help you clear what’s in your stomach.
Physically vomiting in my case was not as painful as I expected, even with my midline incision. Your body learns to do it in such a way that it’s not too painful, so don’t overthink it. Be warned, what comes out can be some very strange colours – but this is normal and your team will keep an eye on it!
Getting moving is important
It may be the last thing you feel like doing, but getting moving after your surgery is one of the biggest helps and in getting your body working functionally again. For me, I struggled a lot the first 2-3 days with moving as I was so exhausted and weak. With the help of the nurses and my Husband, I slowly start to build up my stamina to sitting up, and then eventually by day 6 managed to sit on a chair outside of my hospital bed.
Building up your exercise tolerance isn’t enjoyable and can create some very strange feelings – especially considering your intestines and other organs are finding their new arrangement in your slightly more spacious abdomen – but, it quickly helps you to start to feel better. Once I started to move, my stoma got more active and I began to get just a little hungry.
You might still feel the urge to use the loo
It’s not uncommon to still get sensation in your bum and the urge to need to use the toilet. I didn’t know this, and in the days following my surgery panicked that something must be wrong. It is okay to let this feeling happen, and it’s okay if ‘something’ comes out. It obviously won’t be a poo, but your body needs to cleanse itself after everything that’s happened, so bodily fluids often come out. If you’re in any doubt, ask your Doctor as they’ll be able to tell you what’s normal for your situation.
I found the cramping uncomfortable, so I was offered Buscopan for it, which I did find helped. Even months later, I still get cramping sensations daily, but they’re not painful. I believe this is to do with your body not realising that while you still have your bum, it’s not in use, so it tries to send mucus up to bring down your food, which of course doesn’t work as your stomas sorting everything out!
Whatever the science behind it (and I’ll definitely leave it to the experts) don’t panic yourself like I did. Your body is amazing and resilient. You will be ok.
That probably feels like a lot to take in…
There’s a lot of different facets that come to having this surgery and you can’t undermine how major it is. We’re very privileged to live in 2024 where there’s so much more knowledge of the digestive system and how it works and as a result so many people have benefitted from having a stoma. My advice to anyone about to have this surgery would be to take it one day at a time, know that you’re going to feel pants for a while, but it will get better and remember that you’re not alone.
As a group, all us Ostomates have your back and we’re supporting you.
If you’re looking for more support and are not sure where to turn, there’s a couple of great Facebook groups I can personally recommend. One if the ‘Ileostomy & Stoma Support Group‘ and the other is the ‘Crohns and Colitis UK Forum‘.
Wishing you the very best for your surgery, you’re going to ace it!
