Having unexpectedly woken with a colostomy bag, and then choosing to continue using colostomy bags over irrigation, it was just a case of living with colostomy bags.

Colostomy bags are a pouching system used to manage faecal output. They are placed over a stoma, which is a part of the intestines, that has been brought through the abdominal wall to replace the anus. People living with colostomy bags are known as ‘colostomates’. That said, I’ve never heard that word spoken in my life!

This replacement can be either temporary or permanent, depending on the circumstances. In my case it was temporary, in theory only a matter of weeks, or months on the outside. Pah! Weeks! It dragged on a little longer than that…

The stoma can either be from the small or large intestine. A stoma from the small intestine (Ileum) is called an Ileostomy. Mine was from the large intestine (colon) and was called a colostomy. Additionally there are two types of stoma in each case:

  • There is a loop stoma, where a loop of the intestine is pulled part-way through the abdominal wall. This loop is cut part-way through to allow the waste to leave. This allows for faster healing when the situation is reversed.
  • There is also the end stoma, where the intestine is cut all the way through. The active end is then brought through the abdominal wall and the other end sealed shut. This is used for longer term scenarios. This is what I had.

So, I ended up with a temporary, end colostomy and opted to manage it using colostomy bags, instead of irrigation. The reason I had a colostomy in the first place was that, during the surgery to remove the somewhat significant tumour in my colon, the surgeon discovered that my bowel had already ruptured. This left something of a mess! As such the colostomy was the safest way forward. It was, however, unplanned, which meant that my stoma was not ideally located.

Prior to the surgery, when there was discussion of a possible ileostomy, the surgeon marked a cross on the right side of my abdomen. This was so he would know where to locate the potential stoma, so that the subsequent ileostomy bags would sit right. Colostomy bags, however, go on the left side. And he hadn’t marked there. So he made his best guess at the end of, what I imagine had been, a long, drawn out, unpleasant surgery. As it turned out, he went a couple of inches too low.

And, as at least half of the population can attest, sometimes a couple of inches can make all the difference. This was one of those times…

To be fair, at least some of the blame for the stoma location lies with me. Or at least with my weight. Because I’m fairly fat around my belly, gravity arranges things differently when I’m standing up compared to when I’m lying down. There’s an element of… sag… involved. The stoma location, on a washboard stomach, would have been perfect. The stoma location on me, when I was upright and the sag took effect, became a couple of inches too low.

The bag overhung my waistband, making living with colostomy bags more challenging.

This meant that the colostomy bag overhung the waistband of my trousers or shorts. In theory, I could tuck the bag into my waistband but, in practice, this made the capacity of the bag too small to do its job properly. To not tuck the bag into the waistband meant that the bottom of the bag hung below the hem of my teeshirts, which meant that it was visible to the casual observer. I eventually found a shop that sold longer teeshirts, which helped immensely.

With the best will in the world, living with colostomy bags is a big deal. Certainly in the early days. Colostomates are bound to be self conscious of the bag of poo, that randomly farts, hanging from their belly. I certainly was! It seems that everyone knows it’s hanging there, under your top. It seems that everyone knows, and everyone’s looking at you.

They don’t know, of course. They’re not looking. Everyone’s so wrapped up in their own lives that they’re not going to notice something as subtle as a colostomy bag on someone else. Wearing loose clothing can certainly help ensure this. Nothing too baggy, unless you want to, just something a bit looser can help with self confidence. Besides, the reality is that even if someone did notice, they’ll have forgotten in a couple of minutes. The simple test is; would you care if you saw a colostomy bag on a stranger? Would you remember 5 minutes later, if you did see one? Why would anyone else be any different?

My experience was slightly different because the bag hung below my teeshirts and, sort of, swung there. It really caught the eye! My wife solved it for me, she’s very good like that; she suggested I simply wear my bum bag (fanny pack, if you’re American). It’s what I wear when I’m on holiday, to thwart pickpockets. So now I’d just wear it all the time. The bottom of the colostomy bag nestled nicely in the bum bag and I no longer felt self conscious in public. Admittedly, I was a long way from stylish, wearing a bum bag every day. But, when it comes to looking stylish, a bum bag is the least of my problems!

Wearing my bum bag to hide the bottom of my colostomy bag, with Julie; who had the idea in the first place.

As time wore on, I became more comfortable living with colostomy bags. I play (field) hockey for a local team. An elasticated anti-hernia waist belt is part of the equipment with which you are issued, when you start living with colostomy bags. It’s for use during sport and exercise, to prevent, or limit, hernias. I wore it when I played hockey. After the match, however, there are communal showers. After each match, my colostomy bag and I would share the showers with my team mates. Sometimes with the opposing team too. That got some looks, I can tell you. Which, incidentally, flies right in the face of team shower etiquette: no one should be looking there in the first place. Honestly, after a while, I found it genuinely amusing. It really is amazing what you can get used to.

So, having solved one aspect of living with a colostomy bag by wearing a bum bag, I solved another aspect by wearing a backpack. The thing about living with colostomy bags is that they often need changing. If you’re eating well-balanced meals on a well-established timetable, the likelihood is that you’ll get into a routine for changing your colostomy bag too. But, fluctuations in diet, and/or exercise, and/or illness can suddenly, and unexpectedly, disrupt even the best routine. And that’s if you have a routine to start with.

Long story, short; when you’re living with colostomy bags, you always need to carry the means to change your colostomy bag. In reality, this equipment is small enough to fit in a handbag, especially if you’re only out for a short while. I, however, would have looked odd wandering around town with a handbag. Besides, I don’t own one, and Julie wouldn’t lend me one of hers, so I wore a backpack. Every time I went out. For nearly 2½ years. This was fine in the colder months, when I carried hats and gloves and never got caught out by the weather. But in the hotter months, it was day after endless day of having a sweaty back. Ick! At least I had somewhere to carry the deodorant.

The various bags and ancillaries associated with living with colostomy bags

For a detailed explanation of how to change a colostomy bag, see my post on waking with a colostomy bag. In terms of the equipment you need, it goes something like this:

  • Spare colostomy bags, ideally pre-cut to fit your stoma;
  • Scissors in case it the bag isn’t pre-cut*;
  • Disposable sacks to collect up all the waste, for disposal;
  • Release spray, to get the old bag off you;
  • Dry wipes to clean off the spray and… anything else;
  • A mirror, so you can see what you’re doing;
  • Safety pins, or clips, to keep your clothing out of the way;
  • Barrier wet wipes, in case your skin is sore;
  • A sturdy bag, in which to keep all of the above.

* if the bag isn’t pre-cut, it means that you’re down to your emergency supplies, something best avoided.

All of the above is issued to you. Some in the hospital, some later on. It’s actually a bit of an odd system.

I had my stoma from 28th October 2014 until 7th March 2017. Virtually every day of that time was spent wearing a colostomy bag. And, with the exception of the first few weeks, I was in charge of my own supplies.

The prescription for my colostomy supplies was handed off to my GP. From there, it was taken on by a third party external supplier. I would phone them when I needed to get a repeat prescription of my supplies. If I didn’t phone them, they’d call me, assuming I’d forgotten. Every repeat prescription included 6 boxes of 10 pre-cut colostomy bags and various disposables.

This was a vital service because, when you’re living with colostomy bags, if you run out of them, what else are you going to do? As such, there’s no way I’d ever find myself in the situation where I had run out of bags, right? Sadly, and somewhat unbelievably, not! This is my Facebook post from 14th January 2015:

The indescribable relief of receiving your next month’s consignment when you’re literally down to your last colostomy bag!

I’d like to say that this was the only time it happened, but I don’t like to lie. It actually happened when I was on holiday once. In Croatia. I thought I’d packed enough colostomy bags. This turned out to be very wrong. I had to get my parents to mail some more bags to me at the hotel. The relief when the parcel arrived was overwhelming.

A nice photo of Croatia, because it’s a lovely place and I don’t want anyone getting the wrong idea.

I was repeatedly told to build up an emergency stash. I tried. But I ended up having to dip into it all the time. The problem was that there was a two week wait from the telephone order to the delivery. This was explained up front and was just the timescale they operated on. I could re-order the day after I received my delivery if I wanted to, so, actually, this wasn’t the problem at all. No, the problem was me. And my failure to keep on top of something as simple as re-ordering the supplies necessary for living with colostomy bags. Thinking about it now, it seems likely that my ineptitude was down to the general stupidity that comes with chemo brain. I’m actually not that useless, normally.

The difficulty with maintaining supplies starts when you get a dodgy tummy. If you get diarrhea, then it’s not unheard of to go through 10 bags in a day.  There are only 10 bags in a box. Each repeat prescription was for 6 boxes. Two bad days and you’re going to need your stash. three bad days and you’re in trouble. When you’re on chemotherapy, bad days are inevitable, at some point. This is how I described my situation on Facebook on 7th February 2015:

It’s been a while since I wrote anything disgusting about my treatment, so, in celebration of my last round of chemo…
The IV chemotherapy I receive makes me constipated for a few days. No problem under normal circumstances but when you’ve had a colostomy; let’s just say that you end up with bags that are effectively full of gravel. Now you go and enjoy your day.

I shared a lot on Facebook. I found, and still find, doing so to be very helpful to me. I’ll talk about my experiences of the support I got from telling people what I was going through, at a later date.

In the meantime, the point I’m making is that after a couple of days of constipation, your body tends to overcompensate. This can be sudden… and messy, if you’re not ready for it. As such, if you’re using colostomy bags, build up an emergence stash. Then double it. You won’t regret it. And, anything you don’t personally use, is donated to charity for use in less privileged countries. It doesn’t go to waste.

On days where I knew my body was going to flip from constipation, I didn’t leave the house. Or even go far from my designated safe changing area. In my case this was the bathroom. Primarily because it had a mirror above the sink and a cabinet next to the sink. This meant that I could leave all my changing supplies on the cabinet, and see what I was doing in the mirror.

It’s important to find, or arrange, somewhere comfortable to change your colostomy bags. What I looked for was:

  • Access to clean water and soap,
  • A flat area on which to place the disposable sack, so it sat naturally under my stoma, while I was changing the colostomy bag,
  • An easily cleanable area around the disposable sack, in case of mishaps,
  • A mirror, so I could see the reflection of the area around the stoma, to ensure it was clean,
  • Another flat area, or shelf, on which to keep all the disposables, like dry wipes, wet wipes, spare bags, replacement colostomy bags, etc

Sometimes, however, it is not possible to change your bag in the perfect environment. Sometimes you have to do it on the fly. In places where there is no running water. Even in public. Living with colostomy bags has its problems. And these problems are what I’ll cover in my next post.

That time we went camping with the neighbours and served a 12 course meal on the first night, in formal wear. Yes, I’m wearing a colostomy bag…

The reality, though, is that living with colostomy bags is perfectly manageable. It is nothing to be worried about and, sure, it comes with some difficulties but nothing that can’t be overcome. It’s all about making a few adjustments and then getting on with your life. I did it, which means that anyone can do it.