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By (user no longer on site) OP
over a year ago
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At 23 last year I was diagnosed with Crohn's disease....after being totally fucked for a few months being told this is can't be cured really pissed me off!
Fast forward to today and after steroid treatment and being out in anti-infammitories for the rest of my life. I'm doing pretty ok. 95% back to normal.
They haven't cut any pieces of me out yet which is always a good thing. 
So I'm telling you this because I know there's a few on her with the same hopefully they will read this...they may be onto a cure!
The vaccines start trials in July, here's hoping science prevails! 
Oh and they think milk might be a contributing cause to the disease  |
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By (user no longer on site)
over a year ago
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Milk is a massive trigger - the amount in tea is ok. Cereal? Forget it!
It's not nice when your are doubled in pain yet someone can't understand because you look perfectly ok on the outside.... |
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By (user no longer on site) OP
over a year ago
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"Milk is a massive trigger - the amount in tea is ok. Cereal? Forget it!
It's not nice when your are doubled in pain yet someone can't understand because you look perfectly ok on the outside...."
To be honest I've got off lightly compare to others. I still have milk in cereal but have almost totally cut out drinking. That does give the keel over in pain effect.
I only drink bitter shandy now which I'm fine with.
But like you say, man up you look fine, there's nothing wrong with you. |
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By (user no longer on site) OP
over a year ago
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"Have you looked into faecal transplants?"
Not really, I've read it has high success rates for getting people into remission.
I think I'd of preferred that than being annihilated by steroids for 8 weeks!
Although going to a buffet restaurant was great whilst on treatment |
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By (user no longer on site)
over a year ago
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Yeh the odd bitter shandy is manageable.
Just the bloody bubbles
Even going for food is a nightmare - "what have you got without fizz?"
"Errrrr .... Tropicana or water..." |
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By *aucy3Couple
over a year ago
glasgow |
"At 23 last year I was diagnosed with Crohn's disease....after being totally fucked for a few months being told this is can't be cured really pissed me off!
Fast forward to today and after steroid treatment and being out in anti-infammitories for the rest of my life. I'm doing pretty ok. 95% back to normal.
They haven't cut any pieces of me out yet which is always a good thing.
So I'm telling you this because I know there's a few on her with the same hopefully they will read this...they may be onto a cure!
The vaccines start trials in July, here's hoping science prevails!
Oh and they think milk might be a contributing cause to the disease "
The milk things to common a factor,to be unrelated.
Pig worms majorly help,no matter how unappealing they sound.
 |
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By (user no longer on site)
over a year ago
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"Have you looked into faecal transplants?
Not really, I've read it has high success rates for getting people into remission.
I think I'd of preferred that than being annihilated by steroids for 8 weeks!
Although going to a buffet restaurant was great whilst on treatment "
I've read about trials in the US and it looks promising. I think the NHS is trialling it too. And yeh, I feel your pain with steroids. I'm a mess after every course for my CKD. Awful things. |
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By (user no longer on site) OP
over a year ago
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"Have you looked into faecal transplants?
Not really, I've read it has high success rates for getting people into remission.
I think I'd of preferred that than being annihilated by steroids for 8 weeks!
Although going to a buffet restaurant was great whilst on treatment
I've read about trials in the US and it looks promising. I think the NHS is trialling it too. And yeh, I feel your pain with steroids. I'm a mess after every course for my CKD. Awful things. "
My first course was 8 weeks which was bad enough.
When it eventually happens again and I get ill I'll be looking at 12 months on them and weekly blood tests 
I couldn't stop eating on them! Got up to 13st which is the heaviest I've ever been |
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By (user no longer on site)
over a year ago
|
"Have you looked into faecal transplants?
Not really, I've read it has high success rates for getting people into remission.
I think I'd of preferred that than being annihilated by steroids for 8 weeks!
Although going to a buffet restaurant was great whilst on treatment
I've read about trials in the US and it looks promising. I think the NHS is trialling it too. And yeh, I feel your pain with steroids. I'm a mess after every course for my CKD. Awful things.
My first course was 8 weeks which was bad enough.
When it eventually happens again and I get ill I'll be looking at 12 months on them and weekly blood tests
I couldn't stop eating on them! Got up to 13st which is the heaviest I've ever been "
Yeah they done that to me. Still trying to shift it! Used to not be able to sleep and have a massive appetite.
I don't get any pain though, from alcohol or fizzy drinks. The unique symptoms for each person is so frustrating, how some have it worse. |
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By (user no longer on site)
over a year ago
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"Have you looked into faecal transplants?
Not really, I've read it has high success rates for getting people into remission.
I think I'd of preferred that than being annihilated by steroids for 8 weeks!
Although going to a buffet restaurant was great whilst on treatment
I've read about trials in the US and it looks promising. I think the NHS is trialling it too. And yeh, I feel your pain with steroids. I'm a mess after every course for my CKD. Awful things.
My first course was 8 weeks which was bad enough.
When it eventually happens again and I get ill I'll be looking at 12 months on them and weekly blood tests
I couldn't stop eating on them! Got up to 13st which is the heaviest I've ever been "
My weight didn't change too much, I felt hungry but denied myself unnecessary food. I did bloat, and my skin was awful. Just have to keep telling ourselves that it's better than not taking them, organ failure is worse. You'd get necrotic bowel, wouldn't you? |
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