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L

lubnaexperts

Hi
long back I didnt post here, my son has no symptoms since he is diagnosed on 2014, he is now 20 yrs and a graduate and passed through too much stress in the university since he started this year in sept 2017 his calprotectin was 24 then in january 2018 raised to more than 1000 entacort started for 1 month 9 mg then 6 mg and during that calprotectin was 1520 then again till now we raised entacort to 9mg again and after 1 month calprotectin was 1890 !!! during this time we introduced probiotic with prebiotic for the first time 6 Billion and then after one month we got one with 21 billion with prebiotic , diarrhoea started for the first time since 2014 and some feverish and gases my son start modulen IBD liquid one month ago now and one meal with it only we stopped probiotic and withing 3 days gases , fever and Diarrhoea stopped but he is feeling cramps not painful one its like pressure and movement in the abdomen and like sound
he is very worried and hate to do colonoscopy

any idea if this is a kind of flare up or its probiotic effect
as during this journey with crohns calprotectin always up and down without symptoms , only this time symptoms occurred with probiotic and Manuka honey added to him
please waiting to hear your experience
 
Maya142

Maya142

Moderator
Staff member
It definitely sounds like he needs a scope. It sounds like he is not on any maintenance meds, like 6MP or Methotrexate or a biologic? Why is that? Entocort is a steroid and while it may work well in the short term (and it looks like for your son, it is NOT working well even in the short term), you cannot be on it forever.

You can develop all sorts of complications from chronic steroid use, including Cushing's syndrome, adrenal insufficiency, osteoporosis, diabetes etc.

The medications used for Crohn's sound scary at first, but if you think about the scary side effects, they are very, VERY rare. And complications from untreated Crohn's - abscesses, fistulae, strictures, obstructions, perforations and sepsis are NOT rare and can be fatal. So it is REALLY important to treat Crohn's.

Modulen is a great short term treatment to induce remission but it does not maintain remission - i.e. once food is added back, the inflammation comes back. That is why you really need a medication to keep the inflammation under control.
 
L

lubnaexperts

Dear Maya 142

thank you for your reply , my son taking since he diagnosed in 2014 imuran and pentasa and entacort on and off when calprotectin is high and he refused always to shift to humira as he has needla phobia and not agreeing to take Pred because afraid about his bones
 
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