Having stoma surgery is life-changing, and for many, including myself, life-saving. I’ll briefly set the scene and give you the background info. My stoma, ‘Stacey’, was formed in 2011, when I was 19 years old. I needed her due to severe Crohn’s disease (a form of Inflammatory Bowel Disease (IBD)) and due to a large, benign tumour on my colon, the size of a watermelon. Surgeons didn’t find this until they operated.
Finding your ‘food groove’ after stoma surgery can feel like a daunting mountain to climb. One minute you’re recovering from major surgery, and the next, you’re staring at a plate of food wondering, “Is this going to cause a blockage, or am I going to be ok?”
If surgeons had left things even a few hours back in 2011, I was told I wouldn’t be here. My stoma, ‘Stacey’, literally saved my life. But that didn’t mean the transition was easy. In the beginning, my relationship with food was built on fear. Before surgery, everything I ate left me in agony. After surgery, I had to learn to trust food again, which is a journey in itself.
In this blog post, I’m going to share my personal experience of navigating diet changes, the lessons I’ve learned through trial and error, and some tips to help you find your confidence at the dinner table again.
This is just my experience, so it’s important to remember that everyone is different, and as always, if you have concerns, it’s best to contact a medical professional.
Please note that this is with regards to my experiences living with an ileostomy and using a one-piece, drainable ostomy bag. Let’s get started.
The early days: learning to trust again
When I first woke up with Stacey, the thought of eating a ‘normal’ meal was terrifying. For years with Crohn’s, food was the enemy. It took me several months to realize that my body was actually going to be ok with a wider variety of food than I could manage before.
In those first few weeks, I stuck to the basics. White bread, pasta, and potatoes (without the skins). It’s a marathon, not a sprint. Your bowel is unsettled after surgery, so don’t pressure yourself to eat a gourmet three-course meal straight away. Little and often is the way to go. Try new foods one at a time, and chew thoroughly, then if you encounter problems, you’re more likely to pinpoint what caused it.
Trial, error, and the “chew, chew, chew” rule
If there is one lesson I’ve learned the hard way, it’s that how you eat is often just as important as what you eat.
The golden rule? Chew everything until it’s a smooth paste before you swallow. This is especially true for things like sweetcorn, nuts or popcorn, which are said to be the ‘notorious’ stoma foods. I’ve found that I can enjoy a lot of things I was told to avoid, as long as I take my time and don’t guzzle my food!
My ‘stoma staples’: foods that work for me
Everyone is different, and what works for me might not work for you, but over the years I’ve found some reliable go-tos:
- Porridge: My absolute staple breakfast. It’s gentle and keeps my output consistent. I usually have this with some smooth peanut butter and a handful of the fruit I know I can have, such as raspberries, bananas or strawberries (or a mix).
- Eggs: Whether scrambled, poached, or boiled, they are a great source of protein and usually very stoma-friendly. I do find they can cause an increase in odour though and gas sometimes, but that’s my experience.
- Smoothies and yogurts: Since I have a shorter digestive system, I find nutrients are best in their most digestible format. However, I try to make the smoothies myself, as shop bought smoothies, full of sugar, tend to give me the runs.
- Peeled and overcooked veggies: I love my greens, but I always peel my cucumbers and overcook things such as broccoli. Vegetables can be a bit touch and go for me, so it was very much a learning process (and sometimes still is).
Thickening things up and slowing things down
Sometimes Stacey likes to get carried away, and my output becomes like water. It can be draining, both physically and mentally. Over time, I’ve found my ’emergency’ kit for when things get too runny:
- Jelly babies or jelly beans: These are a lifesaver for thickening output quickly.
- Smooth peanut butter: A spoonful of this works wonders for thickening output.
- Ready salted crisps: Not only do they help slow things down, but they also help replace the salt you lose with high output.
- Flat Coke: Don’t ask me why, but flat Diet Coke is something I swear by when Stacey stoma is being a bit of a drama queen!
Keeping a food diary
In the beginning, I found keeping a food diary so helpful. It allowed me to see patterns. Like how caffeine makes me feel edgy and increases my output (I’m a decaf girly now!), or how certain spices might cause a bit of a ‘tidal wave’ later in the evening. Writing it down takes the guesswork out of it and helps you regain that sense of control.
Respond’s useful advice and support
Having a reliable routine with my ostomy products helps me worry less about how food might impact my bag. Joining Respond has made my life so much easier. That feeling knowing my supplies will arrive every month without me having to chase them gives me one less thing to stress about.
Respond also has a wealth of educational and empowering blogs from other ostomates, including:
- Managing output changes with a stoma – by me
- What I wish I knew sooner about living with a stoma – by Mohammad
- Is it normal to struggle after getting a stoma? – by Maryrose
In summary
Managing your diet with a stoma is a balancing act. You’ll have days where everything goes perfectly, and days where you might feel a bit bloated or sluggish. Be gentle with yourself. Your stoma is just part of your story, and it shouldn’t stop you from enjoying the foods you love. It just might mean you have to cook them a bit longer or chew them a bit better!
For so many, including myself, having an ostomy wasn’t the end. It was just the beginning. You can still enjoy food, you can still go out for dinner, and you can still live your best life.
You can message me and follow me on my stoma journey on Instagram: @ibdwarriorprincess
