Ok let’s get the health update out of the way first.
Following a 10 week break from chemo, the tumours in my liver and lungs have grown again and the cancer markers in my blood are also up quite significantly. So it’s back for more chemo in the next couple of weeks. I’ll be taking Oxaliplatin which was the first of the two chemo drugs I was on previously and was quite effective for me. I’m taking some confidence from that, although there are no guarantees that it’ll work as well this time.
I know a lot of cancer patients don’t want to hear their prognosis and I totally understand that. But as a serial planner and a bit of a control freak, I always ask my oncologist. His current view is 12-18 months, but this isn’t an exact science and hopefully he’s being cautious…
One of my very first blogs last November was all about my new life with a stoma. Back then I was a relative novice, still finding my way with my new belly bottom. Well I’m now 16 months in and so here are my thoughts as a seasoned ostomate (that’s what we’re called).
Oh, just a warning. Probably best not to eat anything while you read this – if you get my drift…
First let’s have a recap on the basics
• A stoma is an opening in the abdomen through which bodily waste, in my case poo, passes into a bag.
• There are 3 main types of operation to form a stoma, a colostomy, where the colon is diverted, an ileostomy from the small intestine, and a urostomy which is a stoma for urine. I had an ileostomy and so my experiences may be very different from those who’ve had other procedures.
• Mine is on my right side. It’s dark pink, sticks out an inch or so and is a bit slimy looking.
• I use a drainable bag (which I get on prescription along with various other accessories) which fits over the stoma and has a re-sealable opening in the bottom. I change my bag every 2 days and drain it about 4-6 times in 24 hours.
This isn’t my stoma (I felt that would be crossing a line!), but it is pretty much what it looks like.
My Stoma Reflections
Even though I’d been diagnosed with stage 4 bowel cancer, in those early days my stoma upset me even more than the disease itself. It was a massive shock to wake up with it after my operation. I’d had no warning and couldn’t get my head around the practicalities of the thing. Gradually though, and with the help of the amazing stoma nurses, I’ve come to terms with it.
My stoma is reversible (not all are) and in the first few months I was desperately keen to have the reversal operation. However this can’t be done while I’m on cancer treatment. My treatment breaks are really precious and frankly with a pretty grim prognosis, I’m reluctant to waste time having a further operation. If things improve with my cancer then I may reconsider, but it shows how far I’ve come in accepting my stoma that this is no longer a priority for me.
Access to toilets can be a headache. Disabled toilets are bigger and generally a lot cleaner than standard public toilets (certainly the gents). I have a Radar key which gives me access to them, particularly useful at busy places like sports stadiums, shopping centres, motorway service areas and train stations. I once tweeted about the state of the disabled toilet in the British Museum (it was pretty filthy!) and they were very apologetic. They tweeted back saying that they were reviewing their cleaning strategy and that things would improve. I must pop back and check…
I often find myself idly fondling my stoma bag and squeezing the contents, particularly while reading or watching television. It’s strangely therapeutic, but I guess you need to have one to really get what I’m on about…
For comfort I wear a special waist band over my stoma bag which helps to hold it in place and means it doesn’t stick out from under my clothing.
Diet is a big thing for many ostomates. Initially I was advised to be very cautious about what I ate and in particular to avoid anything that wasn’t very easy to digest. So I was very cautious about fibre, sticking to white bread only and avoiding foods such as seeds, vegetable skins, pips, raw vegetables and salads etc. Basically the theory goes that if it moves through the digestive system too quickly, your body won’t be able to absorb the nutrients it needs. And so you end up steering clear of lots of the healthy stuff most people are encouraged to eat.
I introduced new and more adventurous food gradually and I can now cope with pretty much everything. However, I do avoid eating too many seeds and grains as they go straight through me and fetch up in the bag exactly as they went in. I’ve also dropped baked beans from my standard fried breakfast (wind isn’t good!) and my sweet corn eating days are now behind me.
Bag changes can be unpredictable and challenging, but I’ve become quite skilful at managing them. The key is to have everything (fresh bag, wipes, disposal sack etc) ready and accessible before you start. The biggest hazard is the stoma getting lively mid-change, particularly if the output is too liquid – I’m sure you get the picture! As you have no feeling or control there’s no knowing when things might kick off. I usually do my changes in the early evening as my stoma seems to be quieter then – but it does surprise me sometimes.
The skin immediately surrounding my stoma sometimes gets broken and sore, particularly if it comes into contact with my output when it’s too liquid. I find calamine lotion helps with this. It’s important that a stoma bag is cut to the correct size so that the amount of skin in contact with the output is minimal. I take Loperamide tablets to regulate the consistency of my output, aiming for a porridgey paste.
As I am with bowel cancer, I’m passionate about increasing awareness of stomas and demystifying the whole thing. Around 1 in 500 people in the UK have one so we’re not that unusual. Think about it, in a football crowd of 50,000, there are probably around 100 ostomates. Many people will be very private about it, but I’m happy to tell people all about mine!
I carry a little bag when I’m out with spare supplies in case of of emergencies. We were once in a museum and were told by an attendant that I couldn’t keep my bag with me. I explained that I had a stoma and that I’d prefer to hold onto my bag. He clearly had no idea what a stoma was and although he was fine (if slightly embarrassed!) once we’d told him, it illustrates the lack of knowledge out there.
Humour is helpful and stomas can be funny. They’re intrinsically linked to bodily functions and who doesn’t love a good poo, bottom or fart joke?
Of course nobody wants a stoma, but after the initial shock and a few teething problems, I’m ok with it. I’ve gone from absolutely hating the thing to tolerating it and now I’m actually quite fond of the little fella.
And I’m going to finish with a stoma limerick I’ve written:
I know this may sound repugnant
But my stoma output’s abundant
My strange belly bum
Sits proud on my tum
And it’s rendered my rectum redundant…
Weird I know, but hell, I’ve got cancer so what the f**k!!!