My 25 year old son had his first flare up and it is severe Crohn-collitis. Neither Oral nor IV prednisone worked for him, so has been given Remicade a week ago, still in hospital.
His bleeding stopped around 85% but urge to bowel and pain is still same. I never heard about this disease before, can anyone please share his/her experience how long does it take to heal and back to normal life after Remicade?
Also no clue what should he eat at this time.
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Mandy
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Mandy1313
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Just in case you do not get another reply, what I (as a Crohn's patient), can say is, from all I have heard over the years is that regardless of medication taken, everyone has a different reaction and time span for recovery. I hope you get better info. than this. Has the Gastroenterologist dealing with your son, have a specialist nurse on his team? I had good dietry advice from one of these, although I already knew, that with me high fibre and acidic things (citrus fruits) did cause problems, again this can be very personal. The National Association of Chrohn's and Colitis uk, had lots of useful leaflets, which I got hold of when first diagnosed, helped me, but also useful to give to emplyers and friends, who had problems understanding that not every illness can be "cured" and some are chronic.
Thanks so much for your reply, I talked to nurse practitioner today and he gave me some diet ideas. His next Remicade doze is in 2 days, hopefully he will get much better after it. Thanks. M.
All I’ll say is this (as everyone is different) when I was first diagnosed I had some awful flare ups, however thankfully after a number of years we seem to have got the meds right and now I have maybe one mild flare a year.
With regards to diet I would ignore the advice of follow this diet follow that diet. Tell your son to listen to his body, take note of what might cause a flare up and then just cut that out, for me it was tea and yet I can drink coffee. We are all different and your son will learn what works and what doesn’t.
I’m just saying that SCDiet is all over the internet. Even doctors have heard of it. It works but again the stages are nice and slow. And yes listen to your body regarding any diet. We are all different for sure. All I know is that so many people with IBD go to ER a lot. I never had to. But I know for a fact if I ate whatever I wanted I would be in the hospital!
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