What my daily routine looks like living with an ostomy

I thought it would be interesting to document and share what my daily routine looks like living with an ostomy – in terms of emptying, eating and drinking – and how I structure this around my typical (working) day.

Below is a timeline breakdown of my typical day, with this pattern now very much ingrained and second nature to me.

I can honestly say that having an ostomy hardly infringes on my day at all, so I feel good about it in this respect. I’ve nearly forgotten what’s it’s like to only need one shit a day though which seems like a lifetime ago (those were the days!), but going 4/5 times is fine with me and manageable.

The only mildly annoying thing is occasionally having to empty once in the middle of the night, but often I can sleep right through, however when I need to get up I tend to get back to sleep straight away.

IMG_20190314_091047.jpg
My daily routine managing my ostomy has almost become my ‘new normal’.

In terms of my diet, I would say I’m quite careful with what I eat and try to avoid snacks during the day, as I prefer to eat at set meal times. Although I do relax this approach at weekends.

Thirst and hydration is obviously something those with an ostomy have to be very disciplined on, especially in the morning for me when I always wake up thirsty, but a quick glass of water usually sorts me out. At the weekends, if I go out for a few alcoholic drinks then I make sure I have regular glasses of water in between beers, because otherwise I will regret it in the morning!

Here is how my typical day looks:

7:30am

I drink a pint (568ml) of cordial water each morning as I am usually very thirsty when I wake up and the salts in the cordial help to rehydrate.

This is followed by swallowing two loperamide (Imodium) capsules to help slow down my gut for the day ahead. After much testing, I find capsules work better for me than melts or tablets.

I then empty by bag first thing in the morning:  Empty #1

This is followed by a shower and breakfast, which usually involves porridge with bananas as I find this is a good food to start the day and help thicken my output.

Then I drive to work.

9am

I get a coffee at work first thing to drink at my desk, as I cannot start the day without one! However, I limit myself to just one cup a day as am not and never have been a big fan of too much caffeine due to its diuretic (dehydrating) effects.

I bring with me a water bottle each day which I drop an electrolyte tablet into to help keep me hydrated and alert. I aim to drink 500ml of water before lunch.

11:30am – 12:30pm

I always without fail empty my bag before I eat lunch, even if it’s not particularly full which can often be the case. I have access to disabled toilets at work and I always use them for extra privacy.

12:30pm – 1pm

Lunch time. I always bring in my own packed lunch to work which pretty much always consists of two simple sandwiches – usually cheese, ham and avocado with mayo (or something very similar). The reason I keep it simple at lunch is because I want to ensure consistent output from my ostomy as it can occasionally mis-behave with little gas noises that I want to try and avoid at work. Over time, I hope to relax what I eat a bit more.

2pm – 3pm

I usually need to empty my bag quite soon after eating lunch, usually about an hour after eating, although it does vary. Empty #2

2pm – 5pm

I try not to eat anything else for the rest of my working day and instead focus on drinking around 700 ml of water.

6pm – 6:30pm

Once I am back home, I need to empty my bag again. Empty #3.

I also drink a pint (568ml) of cordial water.

7pm – 8:30pm

Depending what my plans are for the evening, I try and eat around 7pm but sometimes it can be 8pm which I am fine with. I tend to have a big freshly cooked meal with the usual meat/fish with vegetables. The only foods I do always avoid are raw or boiled veg. I am often partial to a dessert too, usually something chocolate based!

9pm – 10:30pm

I have to empty by bag about an hour after dinner when it usually fills up – Empty #4.

Usually I empty my bag again right before I go to bed so I can sleep through the night as much as possible. Empty #5.

I always have another glass of water before bed and take one up to keep on my bedside table in case I need a drink through the night. I finally take two more immodium tablets before snooze time, so that’s 4 a day I take.

2am – 5am

I would say that about 50% of the time I need to empty my bag again in the middle of the night, anywhere between 2am – 5am. But on the positive side this means 50% of the time I can sleep right the way through until morning before I need to empty. Empty #6.

Weekends: Saturday and Sunday follow a very similar pattern although I tend to eat more food and vary/ relax my diet too. I usually enjoy a cooked breakfast with sausage, eggs and toast and have more little snacks through the day, which I avoid when at work.

Summary:

5/6 bag empties over a 24-hour period. It is not always exactly like the above timeline, but i’d say 4 out of 5 days that’s how it works out.

I drink around 2500ml of flavoured water per day (this equates to 5 pints or about 8 small glasses).

4 comments on this article

  1. Graham

    Hi, thanks for posting – not the same as my ‘routine’ but very insightful all the same. Since finishing my chemotherapy about 6 weeks ago my output hasn’t really adhered to a routine as it did previously. Having said that, it’s still at its most active first thing in the morning up to about 9:30/10am. But now it seems to be a bit more active during the day/evening when it wasn’t so during (and before) chemo. One question: you mention drinking water a lot – has this been recommended to you?

    1. tomsgutreaction

      Hi Graham, that depends on your exact circumstances…Am I right in thinking you have a colostomy? If so, how much large bowel do you have remaining? I ask because it is the large bowel that functions to absorb water from food and help keep our bodies hydrated. I have an ileostomy and so had all my large bowel removed. This means I have to rely on my small intestine to absorb water from food, but it is not as effective as the large bowel is at doing this. Hence, why those with an ileostomy – like me – have to keep constantly hydrated as thirst is a lot more apparent. I would say 6 week is still early days and that given s bit more time your output should fall into some kind of discernable rythem as well.

      1. Anonymous

        Yes, I had a colostomy at the end of May last year after being admitted to hospital as an emergency. I don’t know how much of my large bowel is left (don’t think that’s ever been mentioned), so perhaps the hydration issue isn’t a thing for me so much.
        Having a colonoscopy next week so I’ll hopefully find out soon if the chemo was successful. I’m also returning to work after nearly 10 months so I’m a little anxious for various reasons, some of which relate to my bag and being away from the comforts of home when dealing with it.

  2. Anonymous

    Wow Thomas – your routine is so appropriate for your circumstances – Mum is so proud and so looking forward to to your big day with Naomi – as always I am so proud of my inspirational son with such a ‘can do’ attitude – keep it up up wonder boy x 🙋‍♀️🥰

Join the discussion >