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Remicade working......but

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Ulcerative Colitis
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Posted 1/23/2014 4:09 PM (GMT 0)
I have had my three loading doses of remicade and get my next one in February. I don't see any blood and my bm's are mostly formed. I also no longer wake up during the night. Mornings are usually my problem, when I have to visit the bathroom at least 3 or four times. I feel much better than I did when I was flaring, but the urgency still remains. Thinking that I still had inflammation down low, I did start back on cortifoam to see if that would help.I can go out much more often than I did previously, but the worry about the urgency still remains. For anyone else on remicade, how long did it take for the urgency to go away? Is there anything else that I can do to help? Again, I am really Feeling much better so I can understand the reason for urgency; especially with no visible blood. What do you think?
Posted 1/23/2014 4:22 PM (GMT 0)
If I'm getting better...I typically feel good about my progress. My last symptom to go is blood. It will gradually get better but doesn't usually go away for 4-6 months. If you were badly inflamed, it takes a long time to heal. Up to half a year. That's what my GI told me when I expressed similar concerns to him and that's what the evidence in my case showed.

I hope you continue to feel better!
Posted 1/23/2014 4:40 PM (GMT 0)
Levi, thanks for responding. From what my GI told me, I was badly inflamed; enough so that I needed remicade. You make me feel better knowing that it may still take some time. I keep thinking that the urgency will never go away. Considering I'm feeling better, it's strange how that is still there. I can deal with four to six months, especially if it's not permanent.
Posted 1/23/2014 5:59 PM (GMT 0)
When I started on Remi, I was pretty much in remission after the loading dose - no bleeding, no mucus. Because my colon had been inflamed for so long and was so damaged, it took time to heal. I continued to have urgency, which resulted in more stools because I was unable to wait to go.

I continued to improve in that area as well as my energy level and overall feelings of well-being for the first year. After two years, my colonoscopy was completely normal - just like someone with no UC. Remember, it took your colon a long time to get so damaged, and it may take a while for it to get well. There's nothing at all wrong with continuing your previous meds for as long as you need them. I still use an occasional hydrocortisone suppository, although I think my problems now are more related to IBS than IBD.
Posted 1/23/2014 6:59 PM (GMT 0)
Thanks Judy. You are right, it took awhile for my colon to get that way, so I shouldn't think it would heal that quickly. It's just that I can tell that there is a major improvement, other than the urgency. My energy has definitely improved, so much that I would like to go out and do more; I just don't trust it yet.
Posted 1/23/2014 7:06 PM (GMT 0)
I think it sounds like you're headed in the right direction!
Posted 1/23/2014 10:49 PM (GMT 0)
I've been on Remicade for 15 months, and I still have ulceration at 10 and 15 cm or so. So I still have urgency. My levels are 'great' at 34 ug/mL.
Posted 1/23/2014 11:12 PM (GMT 0)
I tried thinking of it this way... during my colonoscopy, my colon looked like major road rash... very bad shape!!!! if that had been on the outside of my body I would have accepted and expected it to take a long time to heal and go through many phases before being health smooth skin again..

It helped me to think this way when I just wanted everything to feel better right away. Be patient with your self and your body. looks like you're heading in the right direction. :)
Posted 1/24/2014 2:34 AM (GMT 0)
I'm getting 5mg (max is 10)of remicade how much is every getting ?
Posted 1/24/2014 6:43 AM (GMT 0)
Everyone's symptoms work differently. I know that my last one to go and first one to show up is urgency, then frequency, loose stools, blood, and last and rarest is pain. Everyone has a different order; you might just be like me, where the urgency likes to stick around for a while
Posted 1/24/2014 10:51 AM (GMT 0)
Tier, it sounds like my symptoms are just like yours. The only thing hanging around is the urgency.

Therearemiracles, I am on 5mg/kg.

Canadagal, that is a great way of looking at it. That kind of damage on the outside would take quite awhile to heal. I'm trying to remain patient, but it's tough.

Tornado, that could be what's wrong with me. Even though I feel good, it's most likely not healed somewhere in there. Everyone who commented keeps reminding me to be patient for that reason. 15 months is a long time though to be on remicade and still have problems. Hope yours heals soon.

Rbartolo, I sure hope so. This is getting old.
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