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  • Any advice for living with an ileostomy?
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Living with Crohn's disease

Any advice for living with an ileostomy?

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avatar R.Byng

R.Byng

15/03/2021 at 11:45

avatar R.Byng

R.Byng

Last activity on 27/03/2025 at 18:11

Joined in 2016


1 comment posted | 1 in the Living with Crohn's disease group


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I have MS,EPILEPSY, AND MANY OTHER THINGS. I HAVE AN ILIOSTOPY. Is there anything else I should know?

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avatar Courtney_J

Courtney_J

Community manager
17/03/2021 at 17:53

Good advisor

avatar Courtney_J

Courtney_J

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Last activity on 13/10/2022 at 16:47

Joined in 2020


1,280 comments posted | 18 in the Living with Crohn's disease group

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Hello R.Byng, thank you for opening this discussion. When did you have your ileostomy done? How are you doing now?

Hello all, do any of you have experience with ileostomy? What was the surgery like? How are you coping today? Is there anything you'd like to share or advise for someone yet to undergo an ileostomy?
@pjordan‍ @Sarah16‍ @MikeRoberts‍ @Jeff1420‍ @Nostradamus‍ @COURTNEY54‍ @beatlesue‍ @Leysdown2020‍ @Andrew5573‍ @Jandeacs‍ @Juliecora‍ @Juesafc‍ @KcCasey‍ @judithbarker‍ @Sophia.wraxall‍ @Michalaemma‍ 

Feel free to share here! You advice and stories are so important! emoticon cute

Take care,
Courtney

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Courtney_J, Community Manager, Carenity UK


Any advice for living with an ileostomy? https://www.carenity.co.uk/forum/other-discussions/living-with-crohns-disease/not-about-this-but-i-have-crohns-4073 2021-03-17 17:53:07

avatar Zena-Dawn

Zena-Dawn

01/08/2021 at 14:40

avatar Zena-Dawn

Zena-Dawn

Last activity on 01/08/2021 at 13:55

Joined in 2020


3 comments posted | 3 in the Living with Crohn's disease group


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I have a permanent ileostomy. My best advice is to accept that it is now part of you and just like going to the loo everyday it’s something we just have to do. You don’t have an ileostomy for no reason so again accept that it’s needed or that in my case keeps me alive and roll with the punches (so to speak).

When I first got my ileostomy I’d already mentally prepared for it as it was inevitable. My first bag change on my own (without stoma nurses) Christmas 2018, took me like 30 minutes! Now I’m more experienced a routine bag change takes under 7 minutes.

I hope this helps but I’m here if you want to ask more questions.


Any advice for living with an ileostomy? https://www.carenity.co.uk/forum/other-discussions/living-with-crohns-disease/not-about-this-but-i-have-crohns-4073 2021-08-01 14:40:26

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