Remicade

[Guest guest]

Hi,

The results of the barium x-ray my son had done last Tuesday showed

narrowing/strictures in 2 places in his ileum, the PA said it is like a partial

obstruction. He is now on prednisone, and the doctor wants to start him on his

first dose of Remicade. I meet with the doctor next week to find out more about

Remicade. After reading so much about it on the web, I really don't want him on

this. It sounds just awful and dangerous.

After a month goes by, they want to x-ray him again to see if the narrowing is

helped by the medication and disappears, or if it permanent.

He has been having pale, yellow stools. I've read up on that and now am even

more nervous about him having the Remicade.

Does anyone have any advice? Is there something we could do so that he doesn't

have to have this medicine? I am afraid if he doesn't take it, the narrowing

will just get worse and then be permanent. Is there anything positive to say

about it? He is still on SCD since his infractions in February. I am so

worried, any help will be greatly appreciated!

Thank you,

Belle

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[Guest guest]

Dear Belle

On the BTVC website Elaine wrote that " those with strictures certain

foods may aggravate the narrowed part of the ileum. These foods are

raw grapes, lots of raisins, spagetti squash, celery, fruit and veg

peels, whole nuts (nut flour and nut butter seem ok). " You could try

removing these if you are using them. Go to BTVC website and type in

obstructions and resections into the search for info.

Good luck

Glynis

Mam to Jasmine 7yrs

Diagnosed with Kabuki Syndrome

NG tube fed.