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Pretty shocked by my Colonoscopy results today

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Crohn's Disease
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Jen77
Veteran Member
Joined : Mar 2006
Posts : 2741
Posted 10/5/2016 4:52 PM (GMT -7)
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! redface
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BETTY SUE
Regular Member
Joined : Nov 2015
Posts : 253
Posted 10/5/2016 4:57 PM (GMT -7)
Glad to hear remicade is working - I find that to be a wonder drug! My son has had good luck with it! I hope you get the answers for the swelling lip and find a way to wean off without a relapse. It often seems this disease is a "one step forward" and sometimes quite slowly at that! I have heard the prep is bad. I get to try it soon when I have my first colonoscopy (over 50) and can finally feel a teeny tiny bit what my son goes through with some of his many and ongoing Crohn's tests!
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minnietoty
Veteran Member
Joined : Dec 2010
Posts : 2957
Posted 10/5/2016 5:48 PM (GMT -7)
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.
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gumby44
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Joined : Nov 2007
Posts : 4505
Posted 10/5/2016 5:51 PM (GMT -7)
Congrats!! It's great for you to get some good news. My daughter gets angioedema (swelling lips) and hives. She does not have Crohn's, but her allergist believes that it is some sort of auto-immune reaction. She has to take steroids when it happens, and she has unfortunately been on prednisone more than I have. What does the doc think about your swelling lips?

I have been in remission for two years since my resection surgery, but I have bad symptoms (cramps and diarrhea, abdominal pain) pretty much every day. I think the resection just caused severe IBS. So besides anemia, which I don't have now, I'd never know if I'm in a flare without lab tests, colonoscopies etc. Somehow I though remission would be no symptoms and pain free, but that hasn't been the case for me. It's still way better than active Crohn's with obstructions! I hope you can wean off the Entocort and do well.
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73monte
Veteran Member
Joined : Mar 2007
Posts : 2254
Posted 10/5/2016 6:06 PM (GMT -7)
Great news Jen,

Wishing you continued success. Glad to hear it's working so well.
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Labradorite
Veteran Member
Joined : Sep 2009
Posts : 1332
Posted 10/6/2016 12:34 PM (GMT -7)
So glad your scope came back okay! I'm kind of in a similar position where everything says I am in remission but i still get a lot of the symptoms i get with inflammation. If Im lucky I get about a week or so out of my remicade doses where I feel pretty good but sometimes i get no help from it.
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11009
Posted 10/6/2016 2:13 PM (GMT -7)
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.
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Jen77
Veteran Member
Joined : Mar 2006
Posts : 2741
Posted 10/6/2016 4:30 PM (GMT -7)
Oh yeah there is for sure some scarring I've been told in the past. So that is a possibility. Just stinks, when I think remission I'd like to think I'd be feeling near "normal". Whatever that is anymore!
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scifigal2k
Veteran Member
Joined : May 2012
Posts : 3590
Posted 10/6/2016 7:52 PM (GMT -7)
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?
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pb4
Elite Member
Joined : Feb 2004
Posts : 20577
Posted 10/7/2016 10:50 AM (GMT -7)
Congratulations on a clean scope Jen!!!

Humira put my crohn's colitis in remission and help heal my RV fistula but I also have IBS which my GI suspected years ago. Since going into remission with my CD I still don't feel like I did before getting sick, it's definitely IBS, my daughter and 2 sisters have IBS as well but no IBD.
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Jen77
Veteran Member
Joined : Mar 2006
Posts : 2741
Posted 10/7/2016 3:52 PM (GMT -7)
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!
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gumby44
Veteran Member
Joined : Nov 2007
Posts : 4505
Posted 10/7/2016 7:11 PM (GMT -7)
Hi Jennifer,
I'm pretty sure you can have active Crohn's in your mouth without it being active in your intestines. I get canker sores in my mouth and my eyelid swells when I am especially tired. The docs don't think either symptom is related to my Crohn's, but I think it is related somehow....like part of some auto immune response.

I was just reading an article that found that 42% of people with Crohn's considered to be in remission still have IBS symptoms. The theory is that it is either because of bile acid stuff from surgeries, SIBO or chronic, microscopic inflammation that is not picked up in the scopes. They only biopsy certain areas, that kind of makes sense to me. My IBS is so much worse since my re-section. I do always worry it is low level Crohn's brewing, but I can't prove it, so I just have to wait it out.

https://www.ncbi.nlm.nih.gov/pubmed/15139501
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Labradorite
Veteran Member
Joined : Sep 2009
Posts : 1332
Posted 10/7/2016 7:37 PM (GMT -7)
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.
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Andreita
Veteran Member
Joined : Aug 2011
Posts : 3694
Posted 10/7/2016 9:26 PM (GMT -7)
Hi Jen glad you're scope was good. Give yourself time to heal. I had a lot of what I'd like to call "healing pain" before I reached remission. Also consider the possibility of having IBS as well.

My colon is scarred too. I guess that's something we have to live with.

I would indeed not mess with the meds when they're working.

I hope you feel back to normal very soon.
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pb4
Elite Member
Joined : Feb 2004
Posts : 20577
Posted 10/8/2016 12:02 AM (GMT -7)
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 cry

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.

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