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"I'm so glad I have an Ostomy Bag" - Thaila Skye

May 14, 2015

Okay, so it is pretty bold to say; “I’m so glad I have an ostomy bag”.

It’s not just the fact that, before my ostomy surgery, my Crohn’s disease was in full flare-up and causing blood loss, weight loss, malnutrition and fatigue.

It’s not just the fact that, without my ostomy surgery, I’d be dead from a perforated colon.

No, there is another huge reason why I’m glad to have an ostomy bag, and it’s so that I don’t have to fasten tin cans to my abdomen, or use plastic bags and gaffer tape to collect faeces.

The access I have to stoma care products in the UK is of paramount importance to the quality of my life. Not only do we (currently) have the NHS to help us afford these products, but we have several companies who manufacture and distribute these ostomy appliances and accessories, which are at the peak of today’s medical technology.

In the developed world we’ve come such a long way in terms of availability and quality of these products that are essential for us to live a normal life. They allow us to go back to work, to socialise with friends, to stay active, to enjoy hobbies. Why, then, do we allow the developing world to stay stuck in the past?

I knew things in some places weren’t as good as they are over on this part of the globe, but I never knew it was quite as bad as this:

How would you feel if you had to wake up every morning and have this as part of your daily routine? No, really, just imagine it for a moment. You wake up, most likely covered in your own faeces because it has leaked through a gap where the bin bag has come away in the night, and then tin can hasn’t quite held all the contents securely. So you have to wash everything off, and your skin is sore and irritated from the poor seal around the stoma, maybe with some open sores where the skin has completely broken down. After you’ve cleaned up, you get your new appliance ready to apply, by finding a bin bag (hopefully a clean one), an old tin can (again, hopefully a clean one, or maybe the one you’ve had to use for the last month) and a piece of string or rope or a long rubber band to fasten everything around your abdomen.

Would you feel confident to leave the house? Would you be confident to spend time with friends and family? Would you have body confidence to be intimate with your partner?

In the UK, this would be deemed as totally unacceptable. Your local stoma care nurse would be mortified that you were living in this condition, and the situation would be rectified immediately. But in the developing world, they don’t have the resources to do that. Take Papua New Guinea for example; they only have two stoma nurses to cover the entire country. In Moldova, Hospice Angelus needs 46,000 more bags a month to cover patients, and they have no state supply of stoma bags or education. And in the Philippines a single bag costs a week’s wages.

One of the biggest issues they have in the developing world is the cost of providing ostomy supplies to those who need them. The percentages of people living under the poverty line in some of these counties is shocking:

  • In Iraq, 21.2% of the population is living under the poverty line
  • In Moldova, 13% of the population live in absolute poverty (£1.60 or less), and 2% live in extreme poverty (80p or less)
  • In Papua New Guinea, 57% of the population is living under the poverty line
  • In Mozambique, 81% of the population is living below the poverty line ($2 or less)
  • In Pakistan, 60.3% of the population is living below the poverty line, and according to one academic journal only 20% of stoma patients leaving hospital were deemed capable of independently caring for their stoma
  • In Nigeria, 36% of child ostomates used wrap-arounds and 23% of them used improved bags 

You know that question of, “what would you do if there was a zombie invasion or some kind of apocalypse?” and people say that they’d stock up on weapons or water or baked beans or whatever? Well, I’ve often joked that I’d find an ostomy bag factory to hide in so that I have constant supplies, because that is one of the most important things to me nowadays. And when you take a second to look at the way in which many ostomates in the developing world are living, it feels as though that’s a glimpse of what it would be like for ostomates after an apocalypse; to find whatever items we could to create a makeshift ostomy bag. Yet they aren’t living in a post-apocalyptic world, are they? They’re living in 2015, where we in the developed world can help them.

There’s a charity movement called Stoma Aid, which is aiming to raise £22,000 to change the lives of thousands of people across the world. They want to make a difference to ostomates who deserve a chance to live a normal life.

Please take the time to donate, even if it is just a small amount, to the project. Visit the donation page here or find out more information about the project here on the Colostomy Association's website.

So, like I said at the beginning, I really am glad that I have an ostomy bag, and I bet there are thousands of ostomates who would love to say the same thing.

Check out Thaila Skye's blog here.

 

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