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New to ileostomy life and struggling

Hi, all

After being admitted through A&E on 26th July, I had emergency surgery (turned out to be life-saving) on 1st August and was left with a stoma. Turns out the Crohn's was doing a good job of killing me and the medication wasn't working.

The surgery was unplanned, and waking up with a stoma on top of the trauma of being so ill and rushed in for surgery was a complete shock.

It feels like the last couple of weeks have been spent on physical recovery and learning to manage the physical side of the stoma, but the psychological side of dealing with it has been pushed aside. Now it's making itself known in a big way. The thought of going back to work and dealing with the noises and risk of leaks in the office, and going out with friends socially is terrifying. I'll be bridesmaid for a friend on 1st October, and my mind is racing with every way something can go wrong. All I can smell is the stoma, but I know it's not leaking because I'm obsessively checking it. I've been ujnder a team for on-going problems with depression, which is in a poor way at the moment, but she doesn't know anything about Crohn's or stomas, and the Crohn's/stoma teams don't know how to handle the mental health side.

I don't think it's helping that I'm having very watey output. Everything I drink goes straight through into the bag. It thickens up in the evening and over night to the porridge-like consistency, but come mid-morning it's back to water. The IBD and stoma nurses know and have told me to drink 1 litre of St Thomas's Solution and to restrict other fluid to 1 litre, so I constantly feel thirsty and can't leave the house because if I drink anything the bag fills within minutes.

I know it's still new, and I should be grateful to be alive considering how ill the Crohn's was making me, but right now everything feels lost and helpless. Any advice about managing watery output or support groups in the UK would be very gratefully received.
Oh dear, your story sounds very similar to mine. how much has your output been in 24hours?? I was up to 5 liters at first. it is now down to 2.5 liters ish. people have always told me it will slow down. and it does it just takes time. my heart goes out to you keep your chin up, I know its hard to do. if you need to talk just message me!! praying for you!
How are you doing? Hoping things are better and that your friends wedding went well. Just checking in! Merry Christmas and happy new year