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Anyone had or have a colostomy bag ??

11 replies

TheOriginalNutcracker · 27/05/2014 21:32

I am having surgery on 10th June, during which my womb, ovarioes and cervix will be removed, along with as much endometriosis as possible.

An mri scan has shown that my bowel and bladder are plastered in endo, and I am at high risk of needing a bowelk resection during surgery and a colostomy bag.

I am really really struggling to get my head around the idea. I know it might be temporary, and also things could be worse (cancer hasn't yet been completely ruled out) but I am scared to death of coming round from surgery and finding a bag attached to me. I am scared of how I will react.

OP posts:
Catsmamma · 27/05/2014 21:36

This is someone who has been through surgery ....a great fabby girl and internet chum

Her blog here.

carcharodoncarcharias · 27/05/2014 21:44

Sorry to hear about your health problems. A good friend has a colostomy bag and volunteers for the Colostomy Association. It took quite a while for him to get his head around it. It is a big deal, and you do need to give yourself time to adjust to the idea but there is a lot of help and advice out there.
good luck Thanks
www.colostomyassociation.org.uk/

TheOriginalNutcracker · 27/05/2014 21:52

Thank you both very much Smile

I am still slightly in denial I think, and hoping I wake up without one, but I think I do need to realise that it is a very real possibility.

OP posts:
Catsmamma · 27/05/2014 22:15

good luck, and hope everything goes well for you. x

TheOriginalNutcracker · 27/05/2014 23:59

Catsmamma, that blog, and the author is amazing, so inspirational and positive.

Thanks for the luck Smile

OP posts:
onlyjoking9329 · 28/05/2014 04:46

I acquired a nephrostomy bag in January, I know it's different to a colostomy but if I can help with general bag queries and adjusting to wearing a bag.
I'm hoping mine is not a bag for life.

Thumbwitch · 28/05/2014 05:02

I haven't got direct experience, only that of my Mum, who needed an emergency colostomy due to peritonitis bordering on septicaemia, from a burst diverticulum. I don't know if she was warned prior to the surgery that it might be needed, it was all done in quite a lot of a hurry as she went into hospital with the peritonitis - but she had it all explained to her afterwards, anyway. She was in ICU after for a while, but recovered well.

She was told that she could have it reversed, but chose not to, as she felt that it wasn't worth undergoing surgery again after the 2 years they'd suggested - she hated hospitals and they wanted her to lose weight for an elective surgery to reduce the risk for her heart.

The actual colostomy - the stoma itself was sore for quite a while but the stoma nurse who used to come and see her was really helpful, had all the goods in terms of disposables and ways to make it less sore and so on. Mum was offered a plug for times when she went out, so that she didn't have a bag with her, but she chose not to use it as most of her clothes were fairly roomy anyway.

She found certain foods really annoyed the system - peas, lettuce and cucumber for e.g. were big no-nos as they made things too gassy.

One thing mum had that you may or may not have, as you have said they'll be removing endometrial tissue - Mum's entire bowel had to be lifted out of her body so they could wash out the cavity, because of the peritonitis, so this broke some of the structural areolar tissue that holds the internal organs in place. What that meant was that when Mum turned over in bed she could feel her innards "slopping about" for a few weeks, while the tissues reattached. But it's unlikely you'll need that done to the same extent!

When Mum had hers, all the stoma services were free of charge, including all disposables. I don't know if that's still the case. Also, your stoma could end up being round or oval - it's important to know the difference because the suppliers cut the bags for you, and if you have the wrong shape hole (happened to Mum a couple of times) then you don't get a good seal and you could get leakage. But you should be allocated a stoma nurse, and she/he should tell you all of this.

Hope that's a little useful to you anyway and good luck with it - it's not the worst thing in the world to live with, but learning to manage it can be not much fun. Thanks

Nellyinwellies · 28/05/2014 06:58

I have had an ileostomy for years - got it when I was 30. It was an emergency op to save my life so no time to get used to the idea. After a few 'why me' strops in the hospital (not my finest hour!!) I have got very used to it, had children and wouldn't get rid of it if I could (gastro issues mean it is here to stay). Happy to answer any questions you have!!

Fathertedfan · 28/05/2014 20:15

Thumbwitch's mother's story is much the same as my mother's story - she had a colostomy at 81, was in hospital for six weeks after and has adapted brilliantly to it. She has never had problems with managing and sees the colostomy nurse once a year to check all is ok. Within my fairly small office I also have two colleagues, both middle ages, who have had colostomies also - one has had hers reversed, and the other still has her bag. The second is a big fan of high heels and tight skirts, and it would be impossible to guess that she has had this operation.

TheOriginalNutcracker · 28/05/2014 20:44

Thanks so much for all of the replies. After reading the blog cats mama linked to and reading these posts I am feeling a lot more positive.

Obviously I'd still rather wake up without a bag but if I have one I will learn to cope.

Thanks again

OP posts:
larose · 04/10/2014 18:18

Hi, I just wondered how things went for you?
I had an emergency loop colostomy bag in Jan and then had it changed it to a sigmoid colostomy in July . It's not permanent but I'm not convinced of the other options. I needed time to heal a bit before thinking next steps...
Would love to hear your experience as I'm finding it hard to get my head round although life with 2 kids doesn't allow you to stop and think about much too often!
Hope to hear from you Smile

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