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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Colonoscopy biopsies weren't normal after all


03-23-2012, 01:58 PM   #1
Jackie010307
 
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Colonoscopy biopsies weren't normal after all

I saw the physician's assistant today, and apparently the nurse that called with the biopsy results couldn't read or something! She said the results did show inflammation in the colon. I don't remember what part of the colon, I just remember thinking finally, something points toward an answer. I probably should have had someone go in with me, but my husband was down the street keeping our 4 year old occupied until I was done. I know she said colitis, but I don't remember what kind. From what I'm reading probably microscopic since the colon appeared normal and the inflammation was only seen on biopsy. I am to start on entocort today! She said if it works I should notice improvement in 2-3 days. The biopsies of the ilium were normal. She did say that it's possible crohn's is still hiding somewhere, but she doesn't think it's likely. So for now we're going with a diagnosis of some type of colitis (I wish I knew for sure what she said) and treating the inflammation! I never thought I'd be happy to hear someone say my colon is inflamed, but it sure beats being told it's all in my head or to eat better!
03-23-2012, 02:44 PM   #2
Cat-a-Tonic
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Jackie, so glad to hear you've got some answers and are getting treatment! At your next appointment (if not sooner) you should ask more about what specific type of microscopic colitis you have - I believe there's two main kinds, collagenous colitis and lymphocytic colitis. Both are obviously microscopic although I'm not sure specifically what differentiates the two. The forum Admin, David, has microscopic colitis and he started a thread called "Microscopic Colitis Club" in the General IBD section, you might want to search for that thread for more specific info. My GI has said I've probably either got Crohn's or microscopic colitis myself so I have posted a bit in that thread to get more info.

As for Entocort, I'm not sure why the nurse told you 2-3 days. It actually takes more like 2-3 weeks to kick in. I was on Entocort awhile ago and I remember that it took 9 days for me to feel a difference. Another person on the forum said it took her a full month for it to kick in. So, don't get too worried if you don't notice anything by the 3rd day - give it a few weeks.
03-23-2012, 02:55 PM   #3
Jackie010307
 
Join Date: Jan 2012
Location: Buffalo, New York
Thanks for the info on the entocort. Not sure why the nurse said that, either. The physicians assistant didn't say how long it would take, just to follow up in 6 weeks and we would go from there. She did say it seems like it is probably auto immune related, especially with my family history and other symptoms. I will head over and check out the other thread. I think my family thinks I'm nuts for being excited over this!
03-23-2012, 03:09 PM   #4
Cat-a-Tonic
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I don't think you're nuts, I would be excited too! In fact, when I do finally get fully diagnosed, I am planning on throwing a big party, ha ha. I'll serve lots of tummy-friendly foods (rice, Ensure, mashed potatoes, etc) and play party games with an IBD theme, like "pin the ulcers on the inflamed intestine" (something like that anyway) and everyone will get a goody bag full of stuff like soft TP and Pepto Bismol. Well I've been planning this party for a few years now and I don't think it's going to happen anytime soon, but a girl can dream! Anyway, congrats again and I hope the Entocort works really well for you. It put me into remission and I'm still in remission (yes, despite not having a full diagnosis I'm in remission anyway!). It was my miracle drug so hopefully it works wonders for you too!
03-23-2012, 04:40 PM   #5
Jackie010307
 
Join Date: Jan 2012
Location: Buffalo, New York
I love it! Sounds like an awesome party! I hope you get to have it soon! Make sure the goody bags have funny reading material for those long bathroom trips! Hubby has one somewhere, I think it's called the history of farts, it would be a good one! I hope entocort works for me, I'm hoping to get some sort of a life back. Our zoo membership came in the mail today and I can't wait to be able to take the kids and enjoy the zoo without worrying that I've gone too far from the bathroom.
03-24-2012, 04:32 AM   #6
StarGirrrrl
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Jackie, I am so pleased it looks like you have a diagnosis. You're not nuts for being excited, you're happy the Drs are going to treat you properly now, in terms of meds and attitude! And I always say the day I get a dx is going to be *the* happiest day of my life after all this time
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
03-26-2012, 05:47 PM   #7
dannysmom
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I don't think you're nuts, I would be excited too! In fact, when I do finally get fully diagnosed, I am planning on throwing a big party, ha ha. I'll serve lots of tummy-friendly foods (rice, Ensure, mashed potatoes, etc) and play party games with an IBD theme, like "pin the ulcers on the inflamed intestine" (something like that anyway) and everyone will get a goody bag full of stuff like soft TP and Pepto Bismol. Well I've been planning this party for a few years now and I don't think it's going to happen anytime soon, but a girl can dream!
Too funny Cat!! I may copy your idea if we ever get a dx!!

Jackie - Good luck with the entocort. I hope it helps!!
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03-27-2012, 10:32 AM   #8
Cat-a-Tonic
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Danny's mom, feel free to copy my diagnosis party idea! I hope you and your son can have that party soon. Since I am in remission, I'm pretty much not going to have any further testing until I flare up again. At this point I am loving remission and would rather not flare, so this is a little weird to say but I hope not to get diagnosed anytime soon because that would mean flaring again! So I am okay with waiting a long time before having my party (that gives me more time to plan for it anyway, ha ha).

Jackie, I know the book you're talking about! I think it's called "A History of Farting" - I bought it for someone once as a gag gift. It was on the sale rack, hmmm I wonder why! I'll have to check out the book store again soon and see if they have more copies of it.

I hope you can get to the zoo soon and enjoy it fully without worrying too much about pain and restrooms and all that IBD entails. Have fun, feel better soon, and I hope the Entocort kicks in quickly!
03-27-2012, 12:26 PM   #9
Jackie010307
 
Join Date: Jan 2012
Location: Buffalo, New York
Yep, that's it! We used to leave it in the guest bathroom! I'm hoping it kicks in soon, too. I tried eating lunch today and my body said oh hell no in the one way it knows how! Guess I'm going back to soup and I'll try food again in another week. That's what I get for hoping it worked that fast!
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