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. If surgeons had left things even a few hours, I was told I wouldn’t be here, so she literally saved my life.
When you’ve had stoma surgery, your body can feel like it’s a bit of a scientific experiment. Even years on, you learn new things and notice things that you maybe never gave a second thought before, like how long it takes for something to come out your ileostomy, or your output might have changed colour due to what you’ve eaten.
Being incontinent, there are things that can impact ileostomy output and its consistency and frequency.
In this post, I’m going to share my experiences on this as we look at what things might impact this, especially around times such as Christmas when your diet, for example, may be different to normal. 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.
Managing your ‘new normal’
Managing an ileostomy is all about finding your ‘new normal’. The tricky thing about that ‘normal’ is that it can change. Often without warning. One day, things can be ticking along nicely, and the next, your output might suddenly be like water, or there might be that tumbleweed moment where you’re waiting for your output to actually come out!
Even after 14 years of having a stoma, output changes can sometimes feel overwhelming. Most days, I’d like to think I’m in tune with Stacey stoma and her output, but I still do get days where even Stacey stoma doesn’t seem to have a clue what she’s doing!
Understanding my ‘normal’ output flow
Before we talk about what changes might occur, it seems key to talk about what we’re aiming for when it comes to output. With an ileostomy, your output is generally expected to be a porridge-like consistency. This is usually because your large intestine (colon) has been bypassed, or, in my case, completely removed, so is not functioning or there to remove water from your food.
Typically, I empty my bag anywhere between 4 to 6 times a day, but this may be different for you. On some days, Stacey stoma is more active than others, especially if I’m down with a cold or have eaten spicy food. The key is getting to know your patterns. Once you know what your usual looks like, it’s much easier to spot when something isn’t quite right.
What do I do when my ileostomy is running like a tap?
If you’ve got an ileostomy, you’ve probably been there! You eat something that doesn’t quite agree with you, for example, and suddenly your output is like water in consistency and frequency and your bag is filling up faster than you can say “where is the nearest loo?”
A high output stoma is usually defined as more than 1.5 litres to 2 litres in 24 hours, and can literally feel draining. And it’s not just about the inconvenience and reminder of times before your ileostomy of having to stay near a toilet, it’s about the risk of dehydration and electrolyte imbalance too.
So long as I’m not worried I have a blockage or partial blockage, I do the following:
- Ready salted crisps and flat diet coke – don’t ask me why, but this is something I swear by and is usually my emergency go to if I feel Stacey getting carried away.
- Jelly babies and jelly beans help thicken up my output, along with smooth peanut butter and very smooth mash potato.
- I add salt to my meals (I do this anyway). Especially when our output is loose, we need more salt than your average person, to help us absorb water more effectively.
- As tempting as it is to neck a drink (especially if you feel thirsty), I try to sip my drinks, so that it isn’t as likely to flush my system through quickly. I sip fluids throughout the day but rarely water. It’s usually weak squash or decaffeinated hot drinks, or water with electrolyte tablets in.
- I also take loperamide tablets that dissolve under the tongue, as advised, especially when it comes to the dosage, and monitor how my output is.
What do I do when my ileostomy is giving ‘drama queen tumbleweed’ vibes?
On the flip side, sometimes things can go the opposite way. Thankfully, rarely for me, but it has happened. If your output becomes very thick or stops altogether, it can lead to discomfort, cramping and bloating.
It’s important to stay calm if you can (easier said than done, I know) and think about what you’ve eaten. Chewing your food is everything with a stoma and it’s important to chew your food as much as you can before you swallow it, especially when it comes to harder to digest food.
Here are some tips for encouraging output movement:
- Movement for movement: Sometimes a gentle walk or light yoga can help to get things going ok. Gravity is your friend!
- Warmth: A warm bath or heat pad on your tummy can help to relax the muscles around the stoma.
- Fizzy drinks: This can sometimes help to nudge things along. This does sometimes cause bloating with me, so best to try in small quantities and see how you go.
- Black coffee: I’ve found this helps me too, along with smooth orange juice.
- Massage: Giving the area around your ileostomy a gentle massage can help things to get moving and my husband also massages my back behind my stoma for me, which often helps to ease trapped wind.
An important note on blockages: If you have severe pain, vomiting or your stoma is swelling and hasn’t produced anything for several hours, this could be a blockage. Stop eating and seek medical advice immediately.
Changing how I view food
Before my surgery, I had such a bad relationship with food. Everything I ate caused me pain and nausea, so I lived in a state of fear. After Stacey stoma made her grand entrance, it took me several months to learn to trust food again.
In the beginning, I kept a food diary. This helped me to see patterns such as how caffeine impacts my output (I now stick to decaf, but mainly because caffeine makes me feel edgy), or how certain vegetables just don’t agree with me, even if I’ve done everything within my power to make them ‘doable’.
One of the biggest changes for me was learning to eat for energy, and more regularly. I’d never managed big meals before my stoma, but I find that having regular snacks and smaller meals can definitely help my bowel to learn when to expect food and also avoids having a big tidal wave of output after my evening meal.
Making life easier with my routine and products
Having a good routine with my ostomy products also helps me to worry less about output changes, and how this might impact my bag. When my output is watery, I do worry more about leaks and skin irritation.
Having a reliable delivery service like Respond is a lifesaver. I know I’ll always have my bags, my skin barrier sprays and wipes and adhesive removers, without me needing to panic. Not having to chase prescriptions is amazing.
If I know I’m going to an event like a family gathering or maybe even a gig (I love gigs), then I’ll opt for a maxi bag rather than a midi size. it gives me that extra capacity and peace of mind if Stacey decides to be more active.
The emotions of having an ileostomy bag
Having a stoma is as much a mental journey as it is a physical one. There can be a lot of toxic positivity out there. Don’t get me wrong, I’m the first to shout from the rooftops that my stoma saved my life, but I also like to share the raw, real and tougher reality.
Output changes can make you feel vulnerable and like you’re going backwards. They can make me want to stay at home and cancel my plans because I’m worried about finding a toilet or having a bag leak, and it reminds me very much of the awful memories from before my surgery when I still had my colon and had so much toilet urgency, pain and misery.
If you’re having a tough output day, please be gentle with yourself. It’s ok to feel frustrated. It’s ok to spend the afternoon on the sofa with a film and a heat pad. Your body has been through a lot, and it might still be learning how to navigate life without a colon.
Respond’s blogs
Respond have some inspiring and helpful blogs on their website, including:
- Managing fatigue and energy levels with a stoma by Poppy
- Staying positive with a stoma and beating the Winter blues by Maryrose
- Talking to friends and family about your stoma by Mohammad
For so many, including myself, having an ostomy wasn’t the end. It was just the beginning, even if it takes adjustment and it does things out of the blue to try and throw you off course sometimes.
In summary, managing your output is a bit of a balancing act. As you go along, you’ll discover your own ways of living with a stoma and also the things that make your life easier.
You can message me and follow me on my stoma journey on Instagram: @ibdwarriorprincess
