Patients Crohn's disease
Topic of the discussion
Posted on 15/03/2021 11:45
I have MS,EPILEPSY, AND MANY OTHER THINGS. I HAVE AN ILIOSTOPY. Is there anything else I should know?
Beginning of the discussion - 17/03/2021Any advice for living with an ileostomy? https://www.carenity.co.uk/forum/crohns-disease/living-with-crohns-disease/not-about-this-but-i-have-crohns-4073
Posted on 17/03/2021 17:53
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?
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Feel free to share here! You advice and stories are so important!
Posted on 01/08/2021 14:40
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.