Life with a colostomy – Why we need more support in South Africa
Hello everyone, I know I’ve been really quiet the last few weeks. Life is pretty damn tough. Now that my son is no longer just sleeping all day and actually needs to be entertained, I have hardly any time for anything other than playing peek-a-boo and making bottles. It’s all worth it I swear.
Remember this photo?
Yup, that’s me with my colostomy bag right after I got out the hospital. My tummy has gone down a lot (it was really swollen and I just had a baby) and it’s settled in quite nicely.
I wanted to write this post because I think not enough gets said about this issue. Living with a colostomy has been extremely challenging. Things for me have actually been fairly straight-forward to be honest. I’m in a few online support groups (because you really need those) and the things that other people go through are so much worse than my experiences. However, the one thing I do find to be a major problem is the lack of support on the issue in this country. It’s like some dirty little secret that no one wants to talk about. The bottom line is, people just don’t know what a colostomy is. People have NO idea what a stoma is and trying to order supplies is like trying to get blood from a stone.
Here are my major struggles:
- Supplies are only available through hospital pharmacies and ONLY on order (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
- The code does not always match the one online
- There is no way to ask for samples – like people can in the UK
- Products are fairly expensive – Medical aid does NOT cover it. 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?
- Options are limited – If you don’t like your supplier, there aren’t that many more you can try!
- 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. It’s very new and at the moment has 4 members. I’m hoping that other South Africans 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 ally who I met in a UK support group so between the two of us, we’re trying to make this group a real thing.
Otherwise, I’m going to meet my surgeon on Monday, hopefully we can set a date for my reversal surgery so that I have something to look forward to. I’m thankful that I can get it done at all. So many people have to live with a bag for the rest of their lives and many are even grateful for them because it allows them to live a fairly normal life. Yes, I can do pretty much everything I used to do before I had one – I just miss the good old-fashioned way of life if you know what I mean. I also have plenty of emotional moments where I struggle to deal with having a bag. The smell for one, sometimes can be unbearable after a day and the bag needs to change but sometimes 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.
Don’t forget to share news about my group but please be discreet because not everyone is as blabbery and open about having a bag as I am!
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