Pretty shocked by my Colonoscopy results today

To my surprise my colon and terminal ileum looked great! He said he took a lot of biopsies, which of course will tell the whole story. But he said if that comes back good, he would consider me in remission.

Now why don't I exactly feel like I'm in remission? Or maybe I just don't know what that feels like anymore, and that I'm learning remission doesn't exactly mean symptom free? I actually don't feel that bad right now, but I attributed that to the 9mg of Entocort. I'm thrilled to hear that the Remicade IS actually working. I'm worried he's going to want me off the Methotrexate, since he feels it's toxic to stay on too long. That's going to be a discussion for my follow up appointment. Don't mess with something that's working and my blood work is okay. Guess I have to see how I do with weaning off the entocort. Also need to talk to him more about why my lip swells when it gets close to infusion time and what I can do about that.

So glad that's done for a while again. That prep last night was the worst!

Glad that remicade is working. What's the norm of your colonoscopies? Mine has always been clean but the biopsy results showed activity. The last one I had in August was very clean but the biopsy result showed active ileo-colitis.
Definitely, hope you are not like me. Success stories of remicade give me hope that one day I might go into remission.
Again I'm not convinced of your getting off of methotrexate. It reduces any possibility of your body forming antibodies. Did you talk to your GI about this?
Hope you can find an answer for the swelling of your lips and hope the weaning of entocort goes on smoothly.

Great news Jen,

Wishing you continued success. Glad to hear it's working so well.

Well, it's obviously good news that your scope was all clear. But it's frustrating when you have GI symptoms that can't be explained by anything. I'm not in remission as far as I know, but even if I was, I'm pretty sure I would continue to have some GI symptoms: that's the nature of having surgery =/

Do you have any scarring from damage from past inflammation? If so, that could be causing issues.

Question: wouldn't being on Entocort make the colonoscopy look like there is no inflammation but that's because of the Entocort, not from actually being in remission?

That's a good question scifigal. I know I used to worry about that in the past while on prednisone. But the prednisone would just mask my symptoms, and when they went in there it was an ugly mess. Not sure if Entocort would be the same, since it works more topically. I will add that question to my list for him on the 18th!

I also wonder if it's possible to have oral Crohn's going on, but not have disease activity in the colon? I've got a some painful sores on the inside of my cheek lately. I kinda always thought maybe I was just biting my cheek, but I've got one in a spot where that's impossible now. So with that and my occasional lip swelling, I wonder if I'm having Crohn's in my mouth going on.

pb4, I'm pretty sure that's what he's thinking it is now too. I know I also have bile issues, after they took out the gallbladder. I take Questran for that. So I know there are other things in the works. So hard when you just want to function normally in life a bit!

I agree with Gumby, I was willing to write similar symptoms off as IBS/stress including a whole bunch of mouth sores that i usually only get with flares but they miraculously went away immediately after the remicade infusion and absolutely nothing else had changed so i wouldn't be so quick to say you don't still have some level of inflammation going on.

Yup!!! My GI said I fell into the chronic inflammation due to Crohn's disease going on for 12 yrs before IBS reared it's ugly head my way, plus they say it can very a very inherited syndrome, as my daughter, grandchild and 2 sisters and quite a few cousins that all only have IBS in my blood relatives....but there are also bowel issues on my husbands side of the family as well, along with depression and other horrible sufferings.

It's quite heartbreaking really

I guess you could even say that in my particular case the way my health took a dive was from a fairly young age to having the most painful and huge areas of my skin affecting, neck, chest, belly button area, inside elbows and wrists, between fingers, butt cheeks and back of knees and ankles with bloody puss very open and quite deep ulcers-ish looking rashes, I was like a walking flesh eating disease, like a zombie and in a lot of physical and emotional pain and cognitive issues all the way into my teenaged years and slowly or seemingly growing out of the severe contact dermatitis-severe eczema as I progressed into my teenager years I was around 15 yrs old when the perianal crohn's skin tags began to appear and then disappear with no change in my bowels, my bowels were very good and completely normal and controllable for me until my early 20's about a yr after I had my first baby....then all hell broke loose.

I was doomed I think from quite early on in my life, my first ever diarrhea was a young toddler when my mom weaned me on to cows milk and I was lactose intolerant causing the diarrhea and bring me to where I am now....guess I've leaned more on the sickly side as a result, but hey, that's life.....it's just all part of the challenges thanks to some fungi and environmental issues and possibly some genetic factors as well is how it looks and seems to be now.