Recently I found myself talking to someone who has a friend who is just about to embark upon a life with an ostomy. A shock ostomy - one which comes out of the blue, and which feels like a worsening rather than an improving addition to one's life. It's easy for me to forget how hard it is for some people to deal with this, as it was such a positive thing for me. But I can easily remember how difficult the early days were, and how my dark tunnel seemed to have no end.
It does of course have an end, and there is light there. This is my promise. It'll get better. The leaks will stop, the nights will get better, the anxiety will improve. A robust attitude to potential problems will insulate you from those problems, a practical approach will ease your transition back into a normal life.
I can't tell you how to improve your mental health but I can tell you a bit about the physical changes which will happen for the better, and the learning path you will take.
Firstly, your stoma will change shape and size, possibly quite drastically. And possibly both ways - bigger, then smaller, then bigger again, then smaller again. In the early days it'll change so much that you'll need to keep measuring it over and over. If you cut the hole in your flange too big, it'll leak. If you cut it too small, it'll leak too, because the flange won't sit well. So you really need to measure it each time and you may waste a few flanges until you become an expert with the scissors.
My stoma went down from 35mm to just 17mm gradually, and I bought a cheap and cheerful plastic (washable) vernier scale so that I could measure it easily. Once my stoma stopped changing, I started being able to ask my supplier to cut my holes to 17mm and now a leak is a distant memory.
Next, you will find a product which suits your lifestyle and this may require trial and error. I have an active lifestyle, and I find that the more I cycle, the more I swim, the more my flange deteriorates. I use Coloplast Sensura flanges which resist sweating and which shrug off water. The Hollister flange is more comfortable, but they don't work so well for my lifestyle so I don't use them. Use what works for you.
Finally, you will become expert at changing your appliance. To begin with I didn't let the barrier wipe dry properly, I didn't line my flange up properly, I didn't press it against my skin firmly enough, I didn't clean the adhesive remover off entirely, and as I said already, I often cut my hole the wrong size. I could fall asleep on the sofa and wake up in a mess. I could be driving along and find a creeping warm wetness invading my concentration, when I was 30 miles from the nearest motorway services.
But these days passed. Whilst you are waiting for them to pass you will deal with a few "emergencies" yourself which, if you look at them positively, will teach you that yes, you can cope with them. Maybe coping isn't too pleasant but you need to remind yourself that there are worse things which can happen. You've already coped with worse things. You've done brilliantly to get this far, and the minor hiccups are easy.
At the end of the day it's only poo, and a warm, comforting shower is only a short way away.
I am recently back from a cycling holiday in Sri Lanka. I have to say, I had doubts about booking such a trip - how would I cope with Arwel in a tropical country with facilities different to the UK? With worse facilities?
Extremely well, as it turned out! Ok, I took quite a lot of stuff (twice as much as you need, all advice says) but that's true wherever I go on holiday. The facilities? Well there were good and bad points, but mainly good. So now I know. I can go anywhere, I need never worry about coping with Arwel in other countries.
Here are the good and bad points.
Good points
- All hotel loos, and many other loos, come equipped with a bidet shower. These are standard in Muslim countries and in many other hot countries where their use is preferred to toilet paper (wetness dries quickly in a hot country). For an ostomate, they are better than loo roll by a mile. I like them so much that I have one at home!
- Those loos which do not have a bidet shower usually at least have running water, and a small bucket (which serves as a flushing mechanism). This may sound primitive, but as long as you have a paper handkerchief in your pocket, you can wet this and use it to clean your pouch after emptying. You can then wash your hands under the tap.
- All places where food is served, no matter how primitive, have hand-washing facilities with SOAP. This is because locals eat with their fingers, and wash their hands before and afterwards. So you can wash your hands properly after using the loo.
- All places where food is served have a stand-alone squat loo on the land behind - you get used to them. There is always a working tap within these and they are cleaner than some I've come across in "civilised" countries.
- Some places (those which are extensions of homes) may not have running water, but a couple of buckets of water will be left outside. (Some of these are people's actual homes, they are generous enough to allow you to use their loo without question. I didn't always realise it was their private loo until afterwards).
Bad points
- I couldn't empty my ostomy "in the field" because Sri Lanka is a hot country, and my hands were so sweaty that I couldn't get my surgical gloves on. I use these to wrap my paper so if I couldn't use the gloves I couldn't wrap my paper and take it with me. I never leave anything behind. Fortunately, there were many loos available to me.
- With the heat, the couplings on my flanges became rather pliable, and they were consequently difficult to get on. This was only because I was on a continually moving cycle-tour. if you plan to stay in a hotel for some time, you can take a cool bag to store your flanges and have your ice-packs re-frozen in the hotel freezer.
To summarise then, I had nothing to fear though I was cycling in a hot country, moving most days, and staying in diverse standards of accommodation. As tests of coping go, it was a pretty good test.
I would really like it if bidet showers became standard in the UK, but I doubt they ever will!
I just read my last post about swimming and I want to say that it has truly become a part of my life now, and I love it. Before Arwel, it was out of the question - I was often incontinent, so Arwel has given swimming to me.
- I took two lessons last Easter, and learned to swim crawl.
- I swim 1k in about 27 minutes now, instead of the 40 minutes it took previously.
- I've made 6 swimming costumes to date!
I'm still no athlete (and I'm not even going to mention running) but I feel better all over for my more varied approach to exercise. Swimming is great!
