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C-scope results and Remicade question!!!

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Ulcerative Colitis
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Posted 10/11/2012 12:52 PM (GMT 0)
After 2 years on remicade today was my first c-scope. I'm not still in endoscopic remission, there are small parts in descendens colon with some erosion and small ulcerations, from 30-50 cm there are pseudopolips. Rectum, colon transverzum, ascendens to valvule Bauchini is all clear. I'm happy because it's all clear in my terminal ileum, doctor expleind me that my gurgling there is because I'm too thin and colon is compressed. I'm not sad, but my doctor was expecting that all will be clean, and to take mi off remicade. We have to wait more. I hope it's posible in future for remicade to heal my whole colon...:))

Is this good progress for remicade? What are your experiences?
Posted 10/11/2012 12:55 PM (GMT 0)
And change in my therapy is from asacol to pentasa 2x2...what is difference between asacol and pentasa?
Posted 10/11/2012 1:42 PM (GMT 0)
these drugs differ slightly in where they are designed to release in the colon, but results will vary depending on the ph and bacteria of your individual colon.
Posted 10/11/2012 1:50 PM (GMT 0)
So let me understand this - you've been on Remi for 2 years and you still have ulceration??? No, this not good progress. Other than the Pentasa, are you on any other medication?
Posted 10/11/2012 2:01 PM (GMT 0)
I was watching my c-scope, there are no big ulcerations, mucus, blood, buth there are stil erosion and small ulcers on descendens colon ..Was on Asacol 2x2, now only Pentasa 2x2 and remicade every 8 weeks...And I had 2 years ago sever pancolitis
Lonie please describe me your first c-scope during remicade, it was all heald or??
Posted 10/11/2012 3:11 PM (GMT 0)
Sounds like you are making progress, albeit at a slow pace. Nonetheless, at least your fear and 'expecting the worst' did not actually come true. I am glad that the gurgling on your lower right abdomin was nothing. I have gurgling on both my lower left and right abdomin, both sometimes with a bit of pain/ache/tenderness. I know I have a few ulcers on my terminal ileum but am unsure about the left side (as I have not had any examinations of the small bowel yet). I am hoping the left side is just IBS or as your GI explains, me being thin (which I am).

Hope you recover quickly!
Posted 10/11/2012 5:28 PM (GMT 0)
hey luna,
I'm in a similar situation. I have been on remicade for almost two years and I am getting a scope on monday. I also have severe pancolitis, and while the remicade helped tremendously, I don't think I'm in endoscopic remission. However, if you go from severe pancolitis to mild inflammation, then I would say the remicade is helping a lot. Maybe the addition of pentasa will do the trick to get you in complete remission. Other than that, there are different diets, supplements out there that you can try

Good luck :)
Posted 10/11/2012 6:40 PM (GMT 0)
I have been on remi for I guess close to 4 years now and still have ulceration. From my initial state that is progress, but this is about as good as its going to get. I have no expectations of complete remission anymore. Never going to have that till I get this thing took out. This beats laying in bed feeling like I was dying though, lol. That's where I was at a few months before my first remi infusion.
Posted 10/11/2012 7:15 PM (GMT 0)
boumboumbambino please keep me informed of your cscope on monday. And I was too diagnosed in 2007..:P

Dr-A I believe in complete endoscopic remission one day, this 2 years on Remicade I'm in clinical remission, feel great and hope that one day I will stay in remission without remicade. If I could achieved once endoscopic remission, there is hope it will happen again...class optimist..:))

Post Edited (luna89) : 10/11/2012 1:18:21 PM (GMT-6)

Posted 10/11/2012 7:36 PM (GMT 0)
I think full mucosal healing on remicade is possible but less likely with UC compared to CD. It does work better for CD and at lower doses and they don't know why. I was told by my daughter's GI that will new pill cam studies they have found that even "normal" people with "normal" guts have erosions and inflammation in their gut. So, if you're under good control than that's the most important thing.
Posted 10/12/2012 10:03 AM (GMT 0)
I was told once you go on Remicade it is rare to ever get off it & to consider being on it for the rest of your life. Some people take a few years off, but inevitably go back. Two different doctors told me this from their own experiences with patients. Based upon your comment luna89, it makes me think there are other possibilities?
Posted 10/12/2012 11:13 AM (GMT 0)
In Europe a lot of doctors put patients on remicade until endoscopic remission, and then tray to wean them off, it's too dangerous for the rest of your body to be rest of your life on remicade, definitely not my option. There are a lot alternative tretmant, happy to be in clinical remission, but praying for endoscopic remission in next 2 years....
Posted 10/12/2012 11:16 AM (GMT 0)
And remicade is relatively new drug to take conclusion that is for the rest of our lifes, in my country in use last 5 years, in rest of Europe less than 10 years...
Posted 1/21/2015 10:13 PM (GMT 0)
Today I had colonoscopy. It's been 4 years since on Remicade, and second colonoscopy while on it. There are pseudopolyps on rectum and sigmoid, but no erosions and ulcerations from rectum to cecum. Remicade is working for me, but in slow steps. My goal is one day wean off remicade....:D
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