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My Story

I am 34 years old and struggled with IBD symptoms for years. About 7 years ago my symptoms were completely out of control and I finally decided that it was time to get checked out. I was sick every day and missed a lot of work. After multiple trips to my primary care doctor I was referred to the doc that did procedures and was set up for my first scopes an upper endoscopy and a colonoscopy.
The results came back inconclusive, but there was definitely inflammation. I transferred all my care to this doc, I felt like he helped me come up with a plan.
I also saw a GI doc who made me feel like everything I was experiencing was in my head and I needed to go see a psychiatrist. I can't believe doctors can make me feel worse. It took some work and time, but I got transferred to a new GI doc (though he still thought what was going was in my head) said let's do another scope. I remember coming out from the procedure and the first words he said was "you're not crazy, there is something going on and I think it's Crohn's disease."
It was a relief to have a diagnosis and it not be in my head. Since my last colonoscopy this doc has moved forward with me to try treatment that might work for me. I have been seeing this doc for 3-4 years now. I was put on Asacol, then added Entocort. Entocort was not good for me.
My doc had talked to me about Remicade and I was resistant for a year. I don't have a family and one day might want to have a child, so I didn't want be on a drug like that.
I stayed on Asacol and found that prednisone works well for my flares, but over all my symptoms were not under control and when I went on vacation this year it became so clear how my crohn's diease impacted me and really made it difficult to fully enjoy my trip.
I came back and called up the GI doc and said I am ready to try Remicade. I have been on it since July this year and though my symptoms are not gone, I feel that they are more manageable, my pain is less, diarrhea is more controlled, and the nausea is a lot less.
I saw my doc during my infusion last week and so far so good. I am not having side effects and I am not building antibodies against the Remicade.
Ideally I would like to symptom free, but for now this is an improvement. I am also still on Asacol.
 
hi Kabowman!

i'm glad the remicade is helping you out.

i also recommened diatary changes, a si have controlled most of my symptoms with diet only for 4.5 years with no complications, but its still challenging and i don't discredit meds. i follow a low lactose and sucrose diet which is basically the SCD diet or specific carbohydrate diet. maybe this may also help you a bit.

in case you were interested, there is a new treatment in fda trials for IBD that may have cured UC. learn more about it here- http://www.crohnsforum.com/showthread.php?t=52400
 
Welcome Kabowman,
I'm glad remicade is working for you and there have been many people who have gotten their life back while on it and many who have gone on to have children.
All these scary drugs don't seem as scary when they work.
 
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