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Crohn's Disease Forum » Tests for IBD » Confused about colonoscopy results?


03-06-2017, 05:48 PM   #1
Everly
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Confused about colonoscopy results?

Hello.

Earlier today I had a colonoscopy, and despite the pain that I've been in, everything looked absolutely normal. And when the doctor came in, he said it's very doubtful I have Crohns at all, when I was diagnosed three years back with consistent positive biopsies.

My prior doctor said I have crohns, now my current doctor is saying it's possible I don't?? I'm really confused at the moment...I'm not sure what to think. On one hand, it would be absolutely wonderful if I didn't have Crohns, obviously! But on the other, why would he say I didn't have the disease when the biopsies in the past were consistent with the pattern of Crohns disease?

Has anyone ever had this happen before? I'd love to hear your input...
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03-06-2017, 06:09 PM   #2
Jabee
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This is something that constantly confuses me. I've had crohn's for 12 years and have taken prednisone, Entocort and 6mp (which gave me pancreatitis). I also have celiac disease. Yet when I consulted with an IBD specialist (requested by my GP) he told me he didn't think I had either. Yet he had no explanation for my intestinal inflammation. I test negative for bacteria and parasites. He based his conclusion on the fact that I had complete mucosal healing in between bouts of visible ulceration and inflammation. It began in my duodenum and has slowly migrated down my intestines, appearing at various places. i think there is room for much interpretation (and misinterpretation) on whatever imaging is done to look for IBD, and GIs like not only to see evidence of crohn's but they like to have a solid tissue diagnosis (difficult for much of the small intestine, and difficult because less that half of crohn's patients have biopsies that are conclusively crohn's.

Did you ask your new GI what he thinks you had when you were diagnosed? It might be helpful if you can get copies of your medical records so you can read exactly what your old GI was thinking and use his comments to ask your new GI questions about his "undiagnosis". Crohn's can move all around in the intestines, so I'm also not sure why he didn't suggest imaging your small intestine, especially since you are in such pain.
03-06-2017, 06:15 PM   #3
Sophabulous
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That's really odd!? Like Jabee said, what on earth does he think it is instead then? It seems very unhelpful to say that to you and not offer an alternative explanation!
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03-06-2017, 06:40 PM   #4
Everly
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This is something that constantly confuses me. I've had crohn's for 12 years and have taken prednisone, Entocort and 6mp (which gave me pancreatitis). I also have celiac disease. Yet when I consulted with an IBD specialist (requested by my GP) he told me he didn't think I had either. Yet he had no explanation for my intestinal inflammation. I test negative for bacteria and parasites. He based his conclusion on the fact that I had complete mucosal healing in between bouts of visible ulceration and inflammation. It began in my duodenum and has slowly migrated down my intestines, appearing at various places. i think there is room for much interpretation (and misinterpretation) on whatever imaging is done to look for IBD, and GIs like not only to see evidence of crohn's but they like to have a solid tissue diagnosis (difficult for much of the small intestine, and difficult because less that half of crohn's patients have biopsies that are conclusively crohn's.

Did you ask your new GI what he thinks you had when you were diagnosed? It might be helpful if you can get copies of your medical records so you can read exactly what your old GI was thinking and use his comments to ask your new GI questions about his "undiagnosis". Crohn's can move all around in the intestines, so I'm also not sure why he didn't suggest imaging your small intestine, especially since you are in such pain.
Thank you for your response.

Another GI doctor from the same clinic did my colonoscopy, so the current GI I'm seeing wasn't the one to preform it. Sorry I didn't mention this before -- I'm still a little out of it, lol.

I didn't get to ask him very many questions sadly, but he did take a bunch of biopsies and did suggest I eventually have a pill cam done...which I had before in the past. I'll list the steps I've taken in the past that were positive and lead to my 'diagnosis'.

In my last colonoscopy, three or four years ago, there was visible inflammation. Just a tiny bit in my cecum. Biopsies were consistent with crohns disease. So then I had a pillcam done, and that showed minor inflammation as well in one or two areas. After that, I had an MRI that showed minor bowel thickening of the sigmoid colon.

Not to mention each blood test I take my sed rate is high. And most recently, I had a stool sample done and that revealed inflammation as well.

I guess I'm just really confused, and a bit irritated about all of it. Maybe I just shouldn't take his word so seriously when he doesn't know my history as well as the others do? I don't know....
03-06-2017, 06:42 PM   #5
Everly
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That's really odd!? Like Jabee said, what on earth does he think it is instead then? It seems very unhelpful to say that to you and not offer an alternative explanation!
He said it could just all be IBS.
03-06-2017, 08:46 PM   #6
Jabee
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So after having biopsies that were positive for crohn's it has somehow magically disappeared? Or does this GI mean that your colon doesn't show any inflammation right now (I'm assuming you are taking something that has kept you in remission?). Plus your sed rate is consistently high? What about CRP? Maybe the GI who did the colonoscopy hadn't read your file and was unfamiliar with your case? After I saw the IBD specialist I had another appointment with my regular GI who asked me if the specialist offered any diagnoses other than celiac and crohn's. The only thing the specialist offered in the way of a diagnosis was constipation and he told me to consume 7 grams of fiber a day. After I started his diet I didn't poop for two weeks; fiber constipates some people according to my GI.

Needless to say I haven't pursued a relationship with the specialist.

Last edited by Jabee; 03-07-2017 at 11:40 AM.
03-07-2017, 02:54 AM   #7
Sophabulous
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He said it could just all be IBS.


Ummmm ok. It sounds like he either hasn't read your notes properly or he's gaslighting you, but neither of those are good!

I hope you get some answers soon!
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