Disclaimer: This information is based on my own personal experiences since my ostomy surgery in August 2016. If you are seeking dietary advice regarding your stoma, please contact your stoma nurse, dietician or medical team for further assistance.
I’m coming up to six months with my wonderful ileostomy, Pricilla. It’s not always been a great relationship but I saw quite quickly how she was going to make my life with my chronic illness so much better, I’ve accepted her being here and being here permanently.
What has always been important to me is food. Always. Ever since I was small, I loved food. I baked with my mom as a child, leant to cook as a teenager and enjoying it more and more as I grew up and lived away at university.
When I was diagnosed with Crohn’s Disease, I was devastated; not only because I would be chronically ill – that realisation would come in the months and years that followed – but because I loved food and my digestive system was fighting everything I put in it.
I’ve spent months on special diets, liquid feeds and being nil by mouth. I was always at my lowest when I was on those, both physically and mentally. So to now have an ostomy saving my foodie life is amazing. I know what its like to not eat so now that I can do that and enjoy it; I have a couple of my own tips for new ostomates or anyone wondering how my lifestyle is different now with my ostomy. These are the things I’ve learnt in this ‘post op recovery’ period; they may not work for anyone.
- Eat what you fancy, when you fancy it
I’ve found this to be key and one tip I’ve taken through my entire IBD journey. I went through so many periods before my ostomy when I was so nauseous I just couldn’t eat anything for fear of being sick. Ironically, I was more unwell for not eating, so I came to the conclusion that I should eat what I really fancied when I actually wanted it. Be it just toast or something abit more like fried chicken or milkshakes – all those unhealthy things, really – I would eat them. I needed nourishment and I would take it whichever way I could.
- Never skip breakfast
I try to always have breakfast food in the house. Cereal tends to give problems later on in the day so I stick to toast or bagels. Lately, I’ve taken to making my breakfast slightly bigger and abit more filling. I have something on toast or a filled bagel with a hot drink. I chew well and drink; these two things help the first lot of output easier and without too many problems.
- Listen! Your body will tell you what you need
This is important. Don’t deny your body what it needs, because it will tell you. When I am feeling unwell I stick to things that won’t give me output issues. But when I feel better, I give my body what its been missing. Since surgery, I’ve found that I crave fruit and veggies like never before. I take this to mean that my body is finally getting back into a ‘normal’ rhythm of needing and wanting nutritional food, plus it’s sort of fun seeing what it’s like coming out my stoma! (Is this only me…?)
- Remember your salt and sugar intake
For ileostomates, maintaining your salt and sugar levels is important. You lose so much fluid from your stoma because of the lack of a colon, that its easy to get a sudden drop in those two aspects of diet. I can now tell when I need salt more than the sugar; I top up my levels with salty snacks. My favourites are salt and vinegar Squares, roasted and salted cashew nuts and French fries. I drink flat coke or have some Lucazade when I need my sugar too. These things are good things to enjoy because they also help when you are dehydrated from a stomach bug or the flu.
- HYDRATE. Then hydrate some more
Seriously. Don’t forget to drink! By the time you have a headache, you are already dehydrated. I learnt the hard way a couple of weeks ago to always keep on top of your fluids. This can be hard when you feel unwell, its such an effort and you know it’ll mean emptying your bag more often but it is so important. I refill a water bottle at least twice a day, have a different drink with my main meal to break it up, drink a cup of tea before bed and take water with me to my room, always.
- Don’t overdo the caffeine. Compliment with additional water
I limit myself to two cups of coffee a day. If I am having a thicker output day I have maybe just an Americano. But I always compliment that with a glass of water or squash to off set it. For me, I find it easier to deal with a thinner output than a thick output – due to the spout of my stoma – so I drink and eat my way through my water intake.
- Chew. And chew well
I can not stress this enough. This tip should be for everyone, without or with an ostomy because it is amazing how huge food comes out when you don’t chew well. Obviously, I can see how my food comes out because of my ostomy. It can also hurts your stoma and the surrounding skin too so its important to chew. It also helps you absorb nutrients too. If you follow one piece of advice, let it be this one. It’ll help you see that if you do this, you can eat everything you were ever concerned about. It is a hard habit to get into – mindful chewing I call it; I sit and just chew and chew at some meals, especially if its something new I’m trying – but its worth it. I also add here: Don’t go too long without eating. I find if I am hungry when I eat a big meal such as dinner, I rush and cause myself problems later on when it comes out too thick and my bag leaks.
- Don’t be afraid to experiment (when you feel ready to)
Of course, it’s up to you when you choose to experiment. I wanted to get to three months and them trial some new foods; which also happened to be closer to Christmas. Enjoying food as much as I do, I want to be able to expand my culinary horizons and explore new tastes. I certainty was afraid of new foods – spicy, full of nuts, veggies and fatty meats – but I am not anymore. My problem was my colon and it always has been really, so without it, I am able to enjoy food.
Experimenting here is also about potentially changing your routine to better fit around your stoma. It takes a while to get use to how your stoma works and when it’ll be active and what affects your system more or less than it did before surgery. Its a curious journey that is yours and yours alone to take and enjoy. If something doesn’t work for whatever reason, don’t be too disheartened by that mistake or failure, learn from it. As hard as it is to not let it get you down, it’s an opportunity to adapt abit. I know for some people this isn’t always welcomed or accepted but for me its been a great tool for helping me come to terms with my ostomy.
- But be aware of possible blockages
Do find out what causes blockages for you. Mine was oats; I ate a flapjack and ended up in hospital for three days. Its not to say that I avoid all oat based food now, I just think before I eat. I do know to avoid popcorn – it seems to be a widely recommended item to avoid from all ostomates I’ve spoken too. And as my stoma is still ‘new’ I am cautious about sweetcorn and hard nuts and dried fruit. But if I only have to avoid a couple of things now compared to a long list of things I would avoid with my Crohn’s pre-surgery, I can live with that.
- Eat fruit and veggies (if you can tolerate them)
I would actively encourage you to eat these if you can. I have found them to be very beneficial. Even if they are just a novelty to me so far, I know that they do make me feel better and I enjoy them. There is no point of being miserable by thinking about what you can’t eat, instead focus on what you can eat!
I hope these tips are of some benefit. Of course, please remember that these tips are how I’ve learnt to cope with my new dietary lifestyle, and are not going to work for everyone. I find that finding coping mechanisms for having an ostomy to really help my mental acceptance of being an ostomate for the rest of my life.