Something I get asked about a lot by others is how I have found food after stoma surgery. Everyones experience with diet and eating is different after such a major surgery, but this post rounds up what I’ve found and things I wish I’d known going into life with a bag!
Trigger warning – talk of weight and eating.
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.
Immediately after surgery
When you first come around from your surgery, you’re going to feel pretty groggy for the first 7-10 days. Due to all the trauma, your intestines and GI tract somewhat go to ‘sleep’ for a period in recovery, leaving you anything but hungry. Eventually after a few days, your stomach will start to come back to life and you may even start to notice grumbles (a good sign!) but up until that point, it’s unlikely you’ll be wanting to eat much at all. Usually, the direction is to stick to a liquid diet, working on keeping down simple liquids like water, juice and tea. If you’re able, you may also be encouraged to try things like jelly or ice cream.
The first 6 weeks
For the first 6 weeks after surgery, I was advised to stick to a simple and bland diet. This is due to the amount of healing that needs to happen internally and trying to give your body as strong a start with that as you can. Bearing in mind that I hadn’t really eaten anything for a month before my surgery due to the state of my colitis, I was desperate to get back to eating!
So, what does a ‘simple and bland’ diet look like? Well, it’s anything that’s easy to digest and hearty. If you’re anything like me, it’s likely that you lost a lot of weight during the whole experience, and so the aim is to get you eating things that can help you start to regain that weight.
The general advice is to stay away from large portions, high fibre, and anything that might dehydrate you. These could include things like:
- Nuts and Seeds (a no go)
- Raw Veg
- Veg with tough skins
- Meats that are tough
- Grains/Lentils
During this time, I stuck to lots of simple meals, such as potato, rice, and pasta, which would fill me up but turn into quite easily digested semi-thick output. The important thing to start to think about is how what goes in will look when it comes out. If it’s not going to break down, then it’s best avoided to begin with. You also need to bear in mind that you don’t want your output to be too thick, or else it will be difficult to empty your bag, but you also don’t want it to be too runny, so utilising foods like potatoes, rice, and pasta can help you to manage this.
You might not feel as hungry as you used to
Depending on the circumstances around your surgery, you might find, like me, that you’re not able to eat as much as you once were. This could be for a variety of reasons, but not to worry. Try to stick to eating little and often and let your body be your guide. Five months post-op, I’m still not back to being able to eat full portion sizes, but it is slowly increasing.
While I was admitted to hospital, I was assigned a dietician, and she’s somebody who still looks after me now. She’s been extremely helpful in assisting me to learn to eat again and also has been able to prescribe me meal replacement shakes. Now, I’m not pretending these are delicious – they’re far from it! However, on days when I’m just not up to eating, or if I’ve been feeling unwell, they’re a great way to get calories in without needing a meal. I’d highly recommend talking to your hospital and getting a dietician as the support they can provide is invaluable.
After the 6 weeks is up
Once you’ve hit the six-week mark, generally the hospital starts to suggest that you can continue recovery with a more normal diet. This can be scary, but I think the key is balance. There are no hard or fast rules when it comes to what stomas can cope with digestion-wise – everyone is different.
I have taken the approach of slowly trying foods that I love, but very much monitoring how I deal with them. If I am going to eat a food I haven’t had before, I will try just a small amount and monitor my output. This way, I can see how it affects me and whether I’m comfortable introducing it to my diet more often.
Five months post-op, there’s really not all that much I won’t eat, but I do have a few things I’m wary of. These include:
- Nuts and Seeds – These do not break down and can be quite ‘scratchy’ on your insides, and I don’t like the idea of them coming out. My general rule of thumb is that I will eat seeds up to the size of a tomato seed – that’s a fairly safe size in my mind and doesn’t seem to cause too many issues. Anything bigger than that, I personally avoid, unless I know I can chew them very well.
Fun fact: If you eat dragon fruit with a stoma, you will see all the seeds come out in your bag! Don’t ask me how I know this – it was for science. - Red meat – I have never been a big fan of red meat as I find it tough to process, but now with my stoma, more than ever, I make an effort to avoid it. The only exception to this is if something’s minced, in which case I’m more willing to give it a go.
- Stringy vegetables or tough skins – I learnt the hard way, through a disagreement with green beans, that certain vegetables are not keen to break down, and therefore are best avoided, unless chopped very finely. I stay away from sweetcorn, popcorn, mushrooms, and anything green that isn’t likely to be very pureed.
I try not to set unnecessary rules around what I will or won’t eat, as not only do I find it isn’t needed as on the whole my stoma is very food-friendly, but also after everything that happened, I didn’t need any further excuse to have a poor relationship with eating.
On a daily basis, I’m working on listening to my body and being in tune with what it’s telling me in terms of the food I ingest. So far, I haven’t had any major blockages or issues and I do think this is because I’m careful about what I eat and I am observant of the outcome. As I said earlier, if you try to remember to think about how what you’re putting in your mouth is likely to come out the other end, it helps you to weigh up the cost of what’s worthwhile. There’s no harm in saying no to something because it’s simply not worth it, but equally, you shouldn’t be put off something just because you haven’t had it before.
Be prepared for malabsorption
Before my surgery, my gut was in such a bad state that I wasn’t absorbing the nutrients from anything I was eating, and I naively thought that once I had my stoma that would go away. Sadly, it hasn’t. Although I do manage to maintain my weight, I’m currently struggling to gain any extra and that, for me, was quite unexpected.
I’m still learning to navigate malabsorption, and slowly learning more about it, so can’t pretend I’m an expert, but from what I understand it is common for people with the conditions that often lead to stomas. On top of that, because you have less bowel, your transit distance from mouth to bag is less, which, on top of a system that’s already not working fantastically well, can make it difficult to keep things ‘in’ long enough for your stomach to do its job. I’ve been advised to try taking loperamide tablets which are designed to slow your transit time – I’ll provide feedback on how I get on once I’ve had more time to experiment! Do let me know if you discover any tricks!
Hydrate, hydrate, hydrate!
The biggest change I’ve had to make since my surgery in terms of my diet is regarding hydration. I had no idea how much liquid your colon is responsible for absorbing and when you don’t have it, you find you dry out a lot quicker. Having a high-output stoma, I find that I often have a lot of liquidy output which results in losing yet more fluid that I need.
In terms of how I manage this, I’m fortunate to work with a rockstar stoma nurse, who’s helped me find coping mechanisms. He’s explained to me that when you have a stoma, drinking a lot of water doesn’t actually help you to stay hydrated, as excessive water consumption simply flushes out the essential electrolytes that you need to stay well. So you actually need to be keeping up with your electrolytes and avoiding excess volume.
Hydration is a massive topic in itself, so if you have any concerns I’d recommend chatting to your team, but in essence, I make sure that I have an electrolyte drink each day, especially during warm weather. I drink a mixture of fluids each day, so that I’m constantly giving my body different liquids to hydrate with and not just flushing things through (a glass of milk has become a firm favourite!). I monitor my output and if I find that things are getting too liquid, I aim to eat something that can absorb such as carbs or marshmallows – this is a great trick to help yourself manage what’s going on.
and finally… it doesn’t alway smell fresh as a daisy
It feels wrong to put this ‘note’ into a blog post mentioning food, but I need to talk about smell. I was horrified to begin with when I realised just how badly what you eat can come out smelling… I feel like this might be better suited as a topic for a different blog post as I don’t want to put anyone off their dinner!
I haven’t found a way to stop your output smelling – but, I have discovered neutraliser gel (I get mine from Respond) and they are a GAME CHANGER. Pop one in your bag in the morning, and they absorb any liquid output and take away the smell… helping you empty your bag less and cutting down on embarrassing smells at friend’s houses. As with anything, there are some cons to these tabs, such as them not being overly good to sleep in as they make your bag expand a lot – but for daytime use I wouldn’t be without them!
So that’s it, my opinions on diet and eating after stoma surgery. Personal, detailed and brutally honest as you’ve come to expect from my style of writing. As always, I’m an open book, so if you have a question please do ask me in the comments below or message me. We’re all learning together around here!
