Hello all, where to start, was diagnosed a month ago with crohns although symptoms first began about 6-9 months ago. This year really has been hell and the worst still isn't over, I am currently in a hospital bed awaiting surgery on Friday where I am told they will be repairing a fistula from small bowel to bladder and small bowel to big bowel and the worst part is the ileostomy bag which I am told I will be wearing for 6 months! This has all came as a bit of a shock really I mean I have suffered with insane pain the last few month but never imagined this much damage/problem would come of it. I'm only 19 and I've drifted around this forum and others for a while now and I guess it's time to finally join, I'm just looking to hear some other people experiences preferably younger people but all is appreciated, I'm just scared as it's all happened/ progressed alot faster than any other story I've read I'm also worried about a permanent ileostomy bag. Any advice or information or story's welcome and appreciated . Thanks.
My nightmare story
- Thread starter Danblue
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Hi, I can't really give medical advice as I haven't been through these kinds of symptoms myself, but I'd just say try not to worry about stuff you think might happen in the future. I know that's much easier said than done but most things are easier to tackle one step at a time if you can. This is what my mum always says to me, albeit about more minor things than surgery, but I think she probably has a point in general. 
The surgeons are there to repair damage so hopefully things will start to improve afterwards. Sorry I can't give more practical advice, other than keep reminding yourself that you've been through a lot already so you'll get through this too. :hug:
The surgeons are there to repair damage so hopefully things will start to improve afterwards. Sorry I can't give more practical advice, other than keep reminding yourself that you've been through a lot already so you'll get through this too. :hug:
I'm so sorry you are dealing with this! I'm 23 and have severe Crohns. I promise that you get use to it overtime, it just becomes something you do, doesn't mean it's fun.
I wouldn't be worried about surgery or osteomy too much, an osteomy will give you time to heal inside so you will feel better and it's a temporary one, many people here have had ones for decades. I'm currently in discussions with my doctors about an ostomy, I think of it like this; my disease currently holds me back from living my life to the fullest but an ostomy would let me travel more, be in less pain, and just get out of the house more.
If you need anyone to talk someone feel free to private message me, we are all here for you
I wouldn't be worried about surgery or osteomy too much, an osteomy will give you time to heal inside so you will feel better and it's a temporary one, many people here have had ones for decades. I'm currently in discussions with my doctors about an ostomy, I think of it like this; my disease currently holds me back from living my life to the fullest but an ostomy would let me travel more, be in less pain, and just get out of the house more.
If you need anyone to talk someone feel free to private message me, we are all here for you
Thanks for the replys, I know it is all for the best in the long run and it should bring me a new lease of life in the future it's just the initial part of surgery and a bag it's hard to get my head around as it's all happened so quickly. The thing that scares me the most is a permanent bag I really don't know if I'd be able to accept/ deal with that but Iguess as you say there is no point worrying about the future just take each day as it comes and focus on recovery.
