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Help please!

S

sickofit11

I don’t know where to start...I have been sick for years. Initially, I accepted the IBS diagnosis. But then things got worse. Over the past three years I have been hospitalized 5 times. CT shows inflammation. Enterogram shows inflammation, stool studies show inflammation, bloodwork shows inflammation... Two years ago I even had a right collectomy because of a perforation. Still the GI would not diagnose me because only one colonoscopy showed moderate colitis. I was told the prep caused the colitis.

This last time I was in the hospital the doctor came in and said you definitely have Crohn's... (due to the enterogram, blood work, and stool studies). She put me on prednisone.
Then two weeks later I had a colonoscopy that was normal she said. I don’t think you have Crohn's. She did a capsule endoscopy 3 weeks later... normal (mind you this is while I’m on prednisone).

So...here I sit. Still unwell. Coming off prednisone. No answers! Can you have Crohn's with a normal biopsy?

Are there other types of IBD that would cause imaging, stool tests, and bloodwork to be abnormal, but you’d have a clear biopsy?

Help! I see the GI again in two weeks and I am close to losing it. So disgusted and frustrated. I feel like no one understands, believes me, or cares.
 
ronroush7

ronroush7

Welcome. I am sorry for all of what you are going through. I could be wrong but I think you can have Crohn"s disease with a normal biopsy. Keep pushing until you get answers. You might ask for the doctor for a MRI. You have come to a great support place.
 
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
 
Jabee

Jabee

Good grief! What explanation (aside from the prep) are your doctors giving you for the inflammation? There’s clearly a reason for it that needs to be treated. It’s not normal to have inflammation in the intestinal tract. I respond to prednisone very well, and the crowns is in my small bowel (usually jrnunum and ileum) so often doesn’t show up on scopes. I also usually get scoped after a month or two on prednisone so it’s no surprise they don’t find anything. What are your symptoms (diarrhea? Constipation? Pain?) Can you see another specialist? It would be great if you could get some sort of long-term treatment for whatever you have.
 
ronroush7

ronroush7

lubnaexperts said:
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
Click to expand...
I would lean more towards a flare.
 
L

lubnaexperts

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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