Destigmatising the Colostomy bag – It’s not just for old people

I am not ashamed | Tyranny of Pink

When you think of colostomy bags, your mind immediately goes to old people. It’s such a stigmatised thing that no one talks about it and people certainly don’t share the information willingly that they have one. It’s just something that is not spoken of.

If you regularly read my blog, you will know I’ve recently had serious surgery. If you don’t know then read these posts;

Well one of the delightful outcomes of my nightmare experience was that I woke up from surgery with one of these delightful bags. I wasn’t prepared for this, I had had no prior warning and there was NO way of knowing that could happen as it was a decision my Doctor had to make during my surgery after finding my colon in a bad state (it had been lying in acid for days). For a while, I wasn’t sure if this was something I’d tell people about or not but after 6 weeks of living with it, it’s obvious to me that I should. This is my story.

Acceptance

I have a stoma, I’ve named him Francis. It took a while for me to accept that this is how I’ll be living for a few months. It will be reversed when my colon has had sufficient time to heal. That could take anywhere between 3 and 9 months. In the meantime, Francis and I are inseparable. We’ve spent a lot of time getting used to each other. He’s a lot less scary now that I’ve had a chance to get to know him.

 

While I was still in hospital, the nurses were changing the bag and I didn’t really have to confront my situation for the first three weeks. The bag changes have to happen every couple of days or the bags start drooping on your skin and can be a bit sad-looking. One nurse, asked me if I’ve looked at him yet. That was a huge moment for me. She made me get out a mirror and look at my stoma. I mean really look at him. If you’ve never seen a stoma, or don’t know what it is, it’s basically where your intestine is pulled through a hole in your tummy and acts as your bum. Yup, and your poop comes out that little hole and into the bag which you can empty out as often as you like.

Admitting to myself that this was something I would now be living with was difficult. I cried. I cried so much over discovering this new fixture to my body. Not only did I have healing from multiple surgeries and a new-born baby to deal with but now I’d also have the shame of living with a bag of poo attached to my tummy. It hasn’t been easy and it has taken me a while to get to where I am now.

He drives me nuts sometimes

The worst thing about Francis are his loud and obnoxious farts. Seriously!! You can not control your stoma. When they need to poop, they just do and when they fart, they make sure to do it as loudly as possible as in front of as many people as possible. It can be humiliating! I’ve found that the best thing to do is to just laugh it off and apologise on behalf of your stoma. People are much more forgiving the second time it happens if they know what’s going on and soon enough, you can have an entire conversation and everyone just ignores the loud farting noises coming from your belly.

The truth about my bag

Destigmatising the Colostomy bag - It's not just for old people | Tyranny of Pink

It hasn’t been easy adjusting to this new way of living. Bowel activity isn’t really something that people talk about so it’s embarrassing when you suddenly have no control over yours and you can’t be discreet about it. Looking at my body in the mirror has also been difficult. I’ve now got a huge scar running down my middle, two gashes on the right of my body where drains were placed AND a bag permanently attached to me. It’s ugly and it feels like I’ll never be my same old self. Then I think about all the people who are diagnosed with Crohns disease for example and who have to live with these bags for the rest of their lives. I’m lucky that mine is only temporary.

Never be ashamed of choosing life! #ISurvived Click To Tweet

For now, I try to look at it as another trophy in my struggle reminding me that I lived. I nearly died in that hospital. September 2015 will never be forgotten – I had my precious son and nearly didn’t live to see him grow up but instead, I lived and this is a small price to pay to have my life. I can certainly handle living with a bag for a few months and not being ashamed of myself when the alternative was not living to tell the tale. When you think of it like that, my bag is a blessing.

Francis is quite a cute stoma anyway (or so I’ve been told by a nurse)… some of them are huge and ugly whereas he’s tiny and looks like a little pouting mouth. He’s not the worst thing that has ever happened to me, that’s for certain and after 6 weeks together, I’ve grown accustomed to having him around. You’ve got to be positive about these kinds of things and think about what the alternatives would be. It helps a lot with acceptance.

Always be kind

I hope more than anything that this post makes you realise that having one isn’t something to be ashamed about and if you’re around someone who has one, chances are the alternative for them was not being alive so try not to judge them and instead be supportive and kind.

It’s not an easy adjustment for anyone to suddenly be living with a stoma and a colostomy bag but I refuse to be ashamed of living!

Do you have one? How did you cope with the adjustment? Do you know someone who has had one? Did they tell people openly about it?

Destigmatising the Colostomy bag - It's not just for old people | Tyranny of Pink

Please share this post so that others who are living with shame can realise that living isn’t something to be ashamed of! 

Jonelle | Tyranny of Pink

 

 

 

 

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29 Discussion to this post

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  5. Rashi says:

    Beautiful, brave soul Jonelle. Incredible story. I have the exact same scar as you but different circumstances. You grow to live and love it. A constant reminder of how strong you were and how much you’ve been through.
    Stay strong!!!

    • Thank you Rashi! It really helps to know that I’m not alone and I love the idea of seeing it as a reminder of what we’ve survived. My husband tells me all the time that it’s beautiful because it’s proof of the fact that I’m alive. I have to have a second surgery in January and the surgeon will open me up again but he says this time, as it’s the final surgery he’s going to make it all neat and pretty… so I’m looking forward to that. Thank you for your beautiful comment. Lots of love xoxo

  6. manii says:

    Such a brave post, thank you for educating me. Wishing you speedy recoveries.

  7. Cindy says:

    Thank you for sharing this – it must have been difficult to push the publish button but I am so glad you did. It’s refreshing to be reminded about how close minded we can be as people, but once we understand something it’s so much easier to accept. You’ve made a great leap forward in this understanding possible!. Thank you!

    • Thank you Cindy! It REALLY was. In fact, I nearly didn’t because I kept thinking that everyone is going to be so judgemental after they know “the truth” about me. Boy was I wrong. People have been SO supportive and kind that it has made me so proud of my decision to go public with this whole thing. Thanks for this lovely message. It’s so wonderful to know that I’m making a difference in this whole thing! xoxo

  8. Thank you for sharing your story. You are obviously made of some extraordinary stuff. I can’t imagine what you’ve been through.

    My mother has a stoma although I don’t think she’s named it. 🙂 it took her a very long time to come to terms with it. In the end, she finally decided she could be miserable or live happily and luckily she chose the latter.

    My best wishes to you for quick healing and long term health.

    • Thank you Carol! In the end, we can live in misery or we can choose to be happy and sometimes that means accepting the hand that we have been dealt. Haha I saw a blogger (who blogs about her life with a stoma) who named hers Winnie and I wish I’d thought of that first hehe

      I totally understand that your mom could have taken a long time to accept it but I’m so glad that she decided to live happily!! Good for her! This really isn’t easy to accept!

      Thank you! I so appreciate your positive wishes!

  9. Catherine says:

    So brave to share! The unknown is scary and posts like this change that. I have a friend who has a bag permanently but when you look at the alternative of dying of cancer it seems laughable that someone would ever be ashamed. Great post, thank you.

    • Thank you so much Catherine! Even though my bag is only temporary, I was terrified when I first discovered I had one because I honestly had NO idea. The ignorance was almost worse than the reality of having the bag. This bag saves lives and yet it’s such a hush hush secret and really, it shouldn’t be. Thank you for your comment and encouragement.

  10. Thank you for sharing your story *and* photo of Francis and your scar. You are one brave mama!

  11. Raquel says:

    wow wow wow!!!!!
    All i can say is….you are one very brave courageous and awesome human being i am super proud to call you MY FRIEND!
    Love what you have done Jone, love your attitude got me giggling with some of your descriptions there, also got me teary on others too.
    And we can only imagine what you going through and what you have already been through and you still manage to smile….
    Mother , wife, daughter, grand daughter friend Oscar award goes to…..YOU!
    BIG hugs and kisses to the worlds most handsome munchkin around xxxx

    • *Steps up to the podium to accept the award* Thank you Raquel!! I think sometimes it’s a little less about being brave and a little more about being crazy 😛 No, seriously though, I didn’t want to be ashamed of myself. It was so hard admitting that I have to live with this bag for the next few months. I couldn’t face it at first but then I realised what it was a sign of – life. If the Dr didn’t make this decision then I’d be dead… so it’s easy to be thankful for being able to stay alive and raise my baba.

      Thank you for being a good friend and for saying kind things. The support means everything.

      Oden sends a big kiss. It’s probably mixed in with a little vomit (because he does that a lot) but it’s the thought that counts 😛

      Love you!!

  12. Laura says:

    Life certainly has handed you a big bag of shit hasn’t it :-/

    I am sorry you are dealing with this.

    This is an incredibly brave post. Thank you for sharing your story and your journey with us xx

  13. Bonnie says:

    Again I am so proud of you. I know this took a lot of courage. Well done. You are awesome. Love you lots xxxxx

    • Mom, I pressed publish and then had to take a deep breath… I will take ownership of this one, I had to be brave here… but I felt it needed to be put out there. Thank you mom! xox

  14. Sara Brett says:

    Hi Jonelle – I know a woman In Swaziland, just turned 40 – she’s had a stoma for a few years now, Crohn’s disease.. I also know 3 women (also in their 40’s) in the U.K with permanent stomas – 1 due to rectal cancer, 1 to Crohn’s and 1 to ovarian cancer that metastacized.
    When I worked in acute care surgical ward as an OT one of my roles was to help the patient adjust and manage activities with a stoma. It was hard for people to adjust, but I’ll say this – the women I know personally who suffer with crohn’s have said it has given them their freedom back, life before was that they could never be far from a bathroom.
    Thanks for sharing your story and providing insight into how to be accepting.
    I hope all returns to healthy normal soon.

    • Hi Sara, thanks for pointing out that it’s MUCH more common than people think. Honestly I haven’t in my life met someone who openly admitted to having one and waking up with it was a huge shock to me. If I’d known before that it’s something that could happen to anyone, I don’t think it would have been so scary. Thank you for your well wishes! Looking forward to the reversal but thinking of all those who have to live like this permanently. It’s surgery that can change a life but it’s not easy!

  15. Amelia Meyer says:

    During the time I spend in oncology and surgical wards, I met so many people with bags. All of them young girls, none of them old. It’s temporary and it’s necessary. Unless someone has to change it for you, it’s none of their business.

    • Agreed – but what people don’t understand they don’t readily just accept! I think people just don’t know and that makes it hard for them to “mind their own business”… I’m hoping that seeing it happen to regular people will make people more aware that it really could happen to anyone.

  16. ChevsLife says:

    Thanks for being so brave and sharing your story. Francis sounds like quite a character!

    Many years ago I worked with a litle boy who also had a colonoscopy bag, and congenital deformity where his one foot didn’t grow. He stopped attending school and roamed the streets while his gran was at work. Your post has brought back fond memories of how this boy overcame stigmitisation and bullying at school, and soon, after social service intervention, made friends and attended school again 🙂

    Here’s to acceptance and choosing life xoxo

    • You know, I saw a girl online who had called her stoma Winnie (the pooh) and I was so bummed I didn’t think of that first hehe… Thank you Chev!
      Thanks for sharing your story about the little boy, I can only imagine being so young and having to adjust to this kind of change besides other disabilities but what a wonderful ending to that story!! <3

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