Life with a colostomy – Why we need more support in South Africa

stomareversal - Tyrannyofpink

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? 

I am not ashamed | Tyranny of Pink

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!

The South African Based Facebook Support Group

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!

Please share this tweet!!

Join the new support group for South Africans with a colostomy #Colostomy #stoma Click To Tweet

xoxo

Jonelle | Tyranny of Pink

 

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8 Discussion to this post

  1. Irene Eleftheriou says:

    This has been eye-opening for me to read and think it will be for many. Keep doing what you do and hope all goes well with the reversal surgery. Thanks for this post. Sending love. <3

    • Thank you Irene, that’s definitely my intention so glad to hear I’m getting the message out there. Too many ostomates (people with colostomies) are ashamed because the world doesn’t really understand it. Hopefully if more of us speak up, that will change. Thanks for your well wishes. lotsa love! xox

  2. fiona318 says:

    Hi Jonelle

    A friend of mine tagged me in a shared post of your blog. I have applied to join your support group on Facebook.
    Three years ago (Feb 2013) I was diagnosed with Rectal cancer and after radiation to shrink the tumour I had an op in June of that year in which my entire rectum and part of the colon was removed (and fortunately all the cancer with it) – and I now have a permanent colostomy. Thankfully I did not need further treatment and to date I am still clear of cancer. Believe me, I know what you are going through, but I can understand what a shock it must have been to wake up from surgery to find you had one. I at least knew this was going to happen. I was also very open about it and told EVERYONE I knew either by email, or by my posts on Facebook! I did not want people talking about the cancer or the colostomy behind my back…I wanted them to feel comfortable asking me about it if they wanted to.
    I am very fortunate in that my medical aid covers all supplies in my oncology benefit, and I get all of these through my stoma therapist. I initially used the drainable bags like you have on in the photo – and yes, I agree the smell can knock you out! And I was also always conscious of it. However, once my stool was more solid I went over to closed bags which are much more “user-friendly” – if you can describe it that way!
    I started a blog earlier this year (just a general one) but I have to confess I have not been into it for some time now…but on it I documented my journey with cancer and the colostomy, and how I coped with the news. If you want to read it the address is https://ficassosworld.wordpress.com – it is a lot of reading though, and the first few posts reveal my true emotions on discovering that I had cancer and would require the colostomy.
    You are welcome to contact me if you want to know anything…and I’ll try and help you. (I am in Cape Town)
    Take care
    Fiona

    • Hi Fiona, I’m sorry for only replying now. My silly spam filter had hidden your comment because it had a link in it. Thank you SO much for sharing your experience with me. I will absolutely visit your blog and read about your experiences. It was incredibly scary to suddenly wake up with a colostomy but the truth is, there was so much else going on that I didn’t really think about it until I got home and was suddenly faced with changing it myself for the first time. I was a mess. I cried for an hour solid before plucking up the courage to deal with it myself. I had an incredible nurse show me how and she made me look at it for the first time. If not for her, I wouldn’t have been able to deal with it emotionally I don’t think. I suppose it’s also easy to accept it since it’s temporary. If it was permanent I’d maybe still be in a little shock. Right now, I am just counting down days. That also means I haven’t really accepted it because it’s just temporary but sometimes I still break down when I have to change the bag. I can’t help but feel why me. Then I remember, why not me!

      I’m honestly so glad that you’ve had no issues now. I can completely see how your experience with having a bag is literally life changing. If not for this bag then… so we can be thankful! I have no idea at all about one piece bags. I’m so glad you’ve joined my Facebook group because I suspect you will be an incredible wealth of information to people like me. Thank you for reaching out and connecting and thank you for sharing your story. I will be visiting your blog soon <3

  3. Jadie Jones says:

    Such an open honest post. Thank you for sharing

  4. Monica Bruno says:

    Hi Jonelle, I’m sorry you’re having a hard time, but I’m so proud of you for starting a support group and trying to make a difference. I hope you get to set a date for your reversal surgery and everything goes well!

    • Hi Monica

      Thank you so much. I really appreciate that. Honestly, it could have been much worse for me than what it is. My Dr has seen people react so badly to the bags and I’m lucky, I’ve had no issues with them at least but I’ve really struggled finding local support so hopefully that will change now. Thanks so much for your encouragement. REALLY looking forward to my reversal even though it means major surgery!

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