Ulcerative colitis in a child

[Glittersmoke]

Hello
im very lost at the moment and I’m hoping someone hear can answer some of my questions
my 11yr old daughter has just been diagnosed with ulcerative colitis and is currently in hospital on Iv steroids and antibiotics
she lost a lot of weight very quickly and we thought we may loose her
i want to know wear she goes from hear?
realistically how will her life be effected? How often to flair ups occur? What side effects do the medicines use to suppress her immune system have and how does the condition effect everyday life.
I’ve talked too her gastro consultant and nursing team but I would like too know first hand experience.
thank you

I've had UC for 25 years and my first flare was the worst, by a country mile, and I think that's true for most of us.

I go 1-4 years in remission being totally well. Just gluten free and no cream. Look after myself and try not to get stressed.

Good luck.

Name change as very very outing
I am 56
I had UC as a child and almost died.

I was one of the 1st people in the Uk to have groundbreaking surgery to remove 1.2 metres of bowel leaving me with about 20cms of UC and I believe that as I was the youngest by 30 plus years I am probably the longest surviving.

No doctors ever believe the surgery that I have had. Then they do a colonoscopy/sigmoidoscopy and say- oh you were right.

I was told that I would never lead a normal life
never work
never have children

I had 2 children- both conceived on 2nd month of trying
Haven't had a day off work since 2006 (although I have to make myself work as I will never admit I cant)
I am at the top of my career in a very competitive field and even by MN standards I am a high earner

I dont take any medication
My 2nd pregnancy more or less cured it (which is common I believe)

It isnt a death sentence