This post originally appeared on Tyranny of Pink.
If I look at my life, so much has happened but few things change you as much as nearly dying. In September 2015 I had complications during labour and woke up after emergency life-saving surgery with a stoma. Everything changed at that moment — I became an ostomate!
Living with a colostomy has been extremely challenging. I’ve joined a few online support groups (because you really need that) and read things that other people went through which are much worse than my experience. However, the one thing we all can agree on is the lack of support for ostomates in South Africa.
Here, it seems like some dirty little secret that nobody wants to talk about. The fact of the matter is, many people just don’t know what a colostomy is. They don't know what a stoma is. There are barely any resources and trying to order ostomy supplies is like trying to get blood from a stone.
Here are my major struggles:
Supplies are only available through hospital pharmacies and ONLY online ordering (with the exception of CANSA where you can go by and see what they have).
You need to have the EXACT code to order what you need or no one can help you. And the code does not always match the one online.
There's no way to request samples as people can in other countries.
Ostomy supplies are expensive and medical aid does NOT cover them. It’s not even on the chronic illnesses list. This is most odd to me. What do they expect me to use? A plastic bag?
Ordering options are limited, so if you don’t like your supplier, there aren’t that many more you switch to!
Bottom line, there is little to no support available in South Africa. Having said that, CANSA in Mowbray has been most helpful except that you can’t order products, they work on a first come first served basis which means you’re never guaranteed supplies!
I recently started a South African support group on Facebook. I’m hoping that others with the same concerns as I have can form a community where we can uplift and support each other. The group is only open to people living with colostomies as well as their families or caregivers. Please share it around so that the word can spread. I don’t even know where to start looking for others. Luckily, I have found one ostomate who I met in a UK support group, so between the two of us were trying to make this group a real thing.
Otherwise, I’m going to meet my surgeon to set a date for my reversal surgery, something I'm looking forward to and thankful that I can get it done at all. Many people live with an ostomy for the rest of their lives, and many are grateful for it because it allows them to regain their health. Yes, I can do pretty much everything I used to do before I had a colostomy. I just miss the good old-fashioned way of life, if you know what I mean.
I've had plenty of emotional moments where I struggle to deal with having a bag. The smell for one. Sometimes it can be unbearable after a day and the bag needs to be changed, but mostly I think it’s all in my head. Other people usually can’t smell anything. Those kinds of issues make me feel really down but then I remember, hey, I’m alive and it’s not forever.