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A bit about me (first post)

Hello to all of you

Firstly, sorry about my english, (it is not my mother language). So It's not the perfect one, specially in cientific or medical terms, so I'll try.

I've been reading your histories by a time, (you did'nt know but you were a good support during a difficult time for me) but now I've decide to talk about me aswell.

I am a woman in her thirties, I was diagnosed by extensive colonic crohn last year, after 15 years of total remission of another diagnosis (proctoulcerative colitis with only a pair of centrimetres afected.). I dindt had another colonoscopy during 15 years, doctors thought anual blood test was enough for me, because my "soft" ill.

But now, as I said, the illness changed a lot. After a few symptons meds ordered a colonoscopy wich showed the crohn and the new extension, I experimented a very bad flare just after the colonoscopy..I was very ill at the hospital and I almost lose my colon. ( i dont react properly to corticosteroids). One of you had this reaction after a colonoscopy? I am very worried of that because i guess I will have a lot of them.

At that moment my treatment was only mesalamine so I recibe ciclosporine (doctors said that this drug is the faster to try to avoid the cirugy, and It worked. I felt perfectly on my intestines during during the treatment with ciclosporine.

Moreover, I started azathioprine (wich needs some months to start to work) during the time I was decreasing ciclosporine. I took both and a big amount of corticosteroids, mesalamine too.. But when I finished the ciclosporine and corticosteroids, I had a new flare (3 month after the first one), so doctors decided that I was a candidate to Remicade.

After the first two infussions I reacted well and my levels become totally normal, and my simptoms desappeared (I starded a new cyclo of corticosteroids aswell). But I became to feel bad again on after the theird or fourtht infussion ( 5mg/ 8 weeks). So now I am trying with intensification ( 5mg/ 4 weeks)

Right now we are trying with that intensification but i dind'nt know if it will works because I dind'nt experiment big changes ( a bit better but not a remission yet after a par of intesificated infussions)
To sum up, a very difficult year, switching from one drug to another, and full of fears and doubts, and a incertain future yet.

P. D my symptons are basically pain on my belly , like waves of pain during the mornings (when I wake up) and blood. During my worst flare a year ago I had diarrhea aswell, but it is not tpical on me even when a I have a medium inflamation. Someone with colonic crohn with these symptons.?

Happy to greet you.
Hi there, welcome to the forum. It sounds to me that Remicade is working. It might take a few more infusions with the higher dosage for you to feel better. Are you still on corticosteroids or have you weaned off that? Just wondering because if you were on it and have weaned too suddenly, you might be experiencing some withdrawal symptoms as well. The good thing is if Remicade doesn't work, there are other medications out there that can help. It's just a matter of getting there. My son's symptoms when he is flaring is diarrhea as well - and blood as well as loss of appetite and weight loss to answer your question.
I am on corticosteroids since april, decreasing very slowly (right now on 4mg per day).

Actually I' ve been in corticosteroids since july 2021, apart from a few months.. But the flare showed up so many times that I had to start with them again and again..

I have loss of appetite aswell and weight loss. My IMC is 16 right now. My doctor ordered a parenteral profile blood test for the next month, but he didn't explain to me what it is about. Do you know something about this test?
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I haven't heard of that particular blood test. Could it be that he ordered a test to determine what your levels of Remicade are and to see if there are antibodies present? If this is the case, your doctor can determine if Remicade is still working for if you need to move on.
The leves of remicade is another test that I usually do ever 2 months, but that parenteral profile blood test is different and I think it's related to nutrition leves , but I didnt find too much information.