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A question about remicade and progress

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Ulcerative Colitis
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Posted 5/28/2017 11:12 AM (GMT -5)
Ok I am officially 48 hours after my 2nd remicade infusion. No side effects whatsoever but I'm still having watery stool and extreme urgency (especially at night I'm almost on a set time). I'm not expecting the fast results some recieve I'm just hoping so I can get back to my life with friends and work and just living. My question is I guess if you can explain the process of when your stool formed haha. Did it slowly happen and one day boom out came the happy surprise? Also if you just wanna share your experience I'm new to this and really hoping to get back on track and avoid surgery. I don't really have anyone personally to ask these questions to
Posted 5/28/2017 12:49 PM (GMT -5)
I had my first improvement on remicade a week after my 2nd infusion, a much larger improvement a week after my 3rd infusion, and slow and steady improvement until i reached a remission. It's never as fast as you or i want healing to be. Just be patient.
Posted 5/28/2017 1:11 PM (GMT -5)
Haha oh of course I want to be healed last month. Just looking for a general consensus since I seem to be in the dark just going for the ride. Appreciate the response!!
Posted 5/28/2017 3:32 PM (GMT -5)
I've had slow and steady improvement since the first infusion but the biggest ones since infusions 2 and 3. Still seeing improvement 2 weeks after my 3rd infusion and perhaps most important , steroid free for two weeks now!
Posted 5/28/2017 3:56 PM (GMT -5)
If you're goimg to see an improvement then it will be within the initial loading doses (by week 6). When will the diarrhea go away? Hopefully things will firm up a bit by then.
Posted 5/29/2017 9:47 AM (GMT -5)
Awesome to hear you're steroid free. I was on 60mg for a while I'm finally down to 30mg then 20mg on Saturday. I can't wait to not have to take them anymore
Posted 5/29/2017 1:32 PM (GMT -5)
Just take it slow. Different people have success at different speed. Some people nearly overnight, others it takes some time. I know you want off the steroids, but I'd take it slow until you're feeling well. Better to go a little slower than to have to start over...
Posted 6/2/2017 9:49 PM (GMT -5)
Quick update. My last colonoscopy showed bad inflammation throughout the entire colon. After my second remicade infusion I was not noticing much of a difference and felt weak. Then I was crushed when Wed I passed out and had a blood count of 5.7. Looked like surgery was inevitable. Admitted to the hospital and got a blood transfusion which brought it up to 9.1 (then up to 9.4 on its own. It never goes up on its own) Looks like iv steroids help the most as my BM went from 6-10 to 2-5 while in here. ( actually eating some risky foods on the hospital "low residue") Went for a colonoscopy this morning to find out my entire right side is back to normal. Left side still shows bad inflammation but my Gi has a big smile when I woke up saying he thinks we saved my colon for another rem infusion. I see my colorectal surgeon on tues to get his opinion. This morning I woke up accepting surgery possibly in the next week and now have at least a little hope it can be saved. What a confusing disease we have people I never know what to think haha
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