Home General Info & Awareness #Superstoma Colostomy Day – A Few Notes On The Prada Bag

#Superstoma Colostomy Day – A Few Notes On The Prada Bag

by InvisiblyMe

Saturday 7th October 2017 marks Colostomy Day and I wanted to do a little something for it. I’m glad I wrote most of this the other day but sadly I haven’t done the photos I would have liked to have done – I’m sorry about that and the rather rough form of this post as I’m posting it early. A coincidence perhaps, but I’ve got some kind of stoma obstruction today so I haven’t slept all night and I’m in quite a bit of pain, waiting to see if it eases so I can hopefully avoid another hospital visit. Typical..!


I don’t have a colostomy. Let’s just clear a few things up –

A colostomy bag usually attaches to a part the large bowel (a person’s left hand side). An ileostomy attaches to the small bowel (their right hand side). Both are ‘ostomies’. Both are stomas. They just attach to different things and therefore often sit on different sides of the body. I have an ileostomy, so it’s on my right.

Sometimes there are other bits taken out when a stoma is made. In my case, during my second stoma op, my large intestine was removed. It still freaks me out to think the large bowel can be about 5ft long and I don’t have that anymore!

You don’t have to have had Crohn’s or Ulcerative Colitis or cancer to have a stoma. There are other reasons for having them.

Some stomas are temporary; people can have them ‘reversed’ and the bag taken away. For others, their stomas may be with them for years, or permanently – literally, a ‘bag for life’.

A stoma may change a person in some ways as they learn to grow and cope with it, but they’re still a person and the bag doesn’t define them.

I will make fun of this being a Prada or Gucci, but it’s far from a fashion accessory. Nobody wants it, we didn’t ask for it. The photos you see and the chat you read isn’t promoting ostomies, it’s trying to give each other gentle encouragement and confidence to get back out in the world with their bags without apology.

Some will have other health issues to contend with. Feeling ‘unwell’ isn’t always to do with the stoma. For instance, I deal with headaches & migraines, fibro, fatigue & exhaustion, connective tissue disease, PA, deficiencies, osteopenia. I have it good compared to many, but we each face our own challenges, our own personal problems, our own levels for coping.

Everyone has a different experience with stomas. Some people don’t have very many problems and physically they do far better than before they had the stoma. Other people may struggle, mentally to accept it, and physically with problems a stoma can cause – adhesions, skin conditions, leaks, pain, blockages, the impact on practical daily life in terms of what you can eat or lift or manage to do, lower energy levels, deficiencies, hernias. They can cause a great deal of worry and anxiety day to day, not to mention when it comes to work, telling friends or colleagues, or having the bag as a third wheel in a potential relationship.

I am a mix because I wouldn’t be here if it weren’t for the stoma, but I have problems with it and I’ll be the first person to say it’s not easy. But I’ll also be the first to say it’s not the be-all-end-all either. You can have a good life with a stoma, you can come to learn to love yourself more, appreciate your body better, deal with the problems it throws your way, and be all the stronger for it.

You can find out more information about how others are getting involved today, and where to get support yourself, on the Colostomy UK website .

 

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18 comments

Claire Saul (PainPalsBlog) October 7, 2017 - 10:11 am

Fantastic post to raise awareness – will definitely share this around SM! Well done, you x

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Tony Burgess October 7, 2017 - 10:57 am

Thanks for sharing what your situation is and isn’t. It’s good your situation isn’t standing in the way of your life and how you want to live it.

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Carol Ann Neil October 7, 2017 - 11:35 am

Your brave sharing. 9. Months on front 11. 30 hours of surgery. Stoma bag. Removal of part my stomach, 90% of my intestine and all of my colon removed. Still struggling. Tears streaming from me writing this.

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InvisiblyMe October 9, 2017 - 4:28 pm

Carol – we share a name! And a stoma. I am so sorry you are doing it tough, and I wish there was something I could do to help. I’ve just got home from hospital (A&E for a few days due to stoma problem…) but I am around now if ever you want to talk, just drop me an email. You have been through a heck of a lot and I think all too often we can be too hard on ourselves to accept what we’ve been through and be okay with it, it’s just not that easy. Sending hugs and my very best wishes your way… xx

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Debbie L October 7, 2017 - 12:11 pm

Well written and great to share! Hoping to help others by your openness and beautiful words!

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storybyaggie October 7, 2017 - 2:54 pm

What a lovely inspirational post !!
You should be very proud of yourself of how much awareness and understanding you are sharing with others xx
There is always a light in a tunel !!

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Jacqui shaw October 8, 2017 - 8:36 am

Wow … 5ft of your working insides just gone…. having to deal with all the changes in your life . Up most respect to you and all dealing with the prada….

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Mo Hall October 8, 2017 - 8:41 am

Thank you for your post. It will go a long way towards demystifying stoma life, and showing newbies that you can still live your life! xx

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InvisiblyMe October 14, 2017 - 1:06 pm

I hope so! Thanks for the comment Mo 🙂

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TheWorryGames October 10, 2017 - 9:40 am

Thank you so much for sharing all that! I find it really interesting when you share all these details!

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Benn Bell October 11, 2017 - 6:29 pm

Brave girl

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Christy B October 12, 2017 - 6:14 pm

So glad you’ve cleared up some misconceptions here! This one is going into my Friday roundup that will publish tomorrow.

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lynnabbottstudios October 30, 2017 - 8:01 am

You are an amazing and courageous lady!

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InvisiblyMe November 3, 2017 - 6:08 pm

That is incredibly kind (too generous perhaps) of you to say! Thank you 🙂

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Patty B November 6, 2017 - 12:56 pm

As I read this article and then the comments one word came to mind courageous – then I saw the post before mine – yes you are amazing and courageous and may I add compassionate. You have an encouraging ministry that will bless many.

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InvisiblyMe November 6, 2017 - 4:29 pm

I am very grateful for you stopping by and leaving such a lovely comment, thank you Patty, it means a lot 🙂

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Patty B November 24, 2017 - 3:32 am

Hugs 🙂

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da-AL October 17, 2023 - 5:23 am

this many years later, & still this is so relevant & so brave of you to speak openly about

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