Help! My Doctor called me and says I might not have Crohns

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UC21
Regular Member


Date Joined Oct 2009
Total Posts : 68
   Posted 10/24/2009 10:19 AM (GMT -7)   
He said after the colonoscopy that my colon looked like hell, and he said I have Crohns, but the biopsy results came back yesterday and as he said "they were unimpressive".....(What the hell does that mean)

Now he wants to do ANOTHER colonoscopy to confirm his diagnosis...

UGH

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/24/2009 10:25 AM (GMT -7)   
Humm the biosy's might just not have popped as "positive" for crohns as he would have assumed they would have after seeing your colon. After all there are other reasons for having a colon looking bad.  But I also do not want to give false hope.  There just could be contributing factors to how bad it looked is what I meant.

Did you ever get that pill cam done?  The unfortunate thing with that is they cannot get biosies.


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Post Edited (MMMNAVY) : 10/24/2009 11:36:43 AM (GMT-6)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/24/2009 1:52 PM (GMT -7)   
You can have crohns without have granulomas in your biopsies. Only a certain percent of people w/ crohns have positive biopsies.
27 Year old married female lawyer.  Diagnosed w/ CD 5 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant but can handle anything cultured and do well w/ lactose pills and lactaid. For Crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 10/24/2009 6:01 PM (GMT -7)   
Interesting to hear that others get conflicting results. Right after my colonoscopy, my doc said I could have UC or crohn's. The biopsy said diverticular colitis. After having a rocky course for a few months, I got my PCP to do the prometheus test and it was positive for crohn's. After being frustrated for months now, I am trying out a new GI. Also, this past summer, I had mouth ulcers and what I think were fissures, so I would like to know what the new doc thinks about all this. Good luck to you!

diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's
 


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 10/24/2009 7:30 PM (GMT -7)   
A biopsy is removal of a bunch of cells. You can certainly do tests on the cells. But the biopsy itself cannot be a 'positive' or 'negative'. Rather inspection of the cells might reveal information as to extent of inflammation, abnormal cells, granulomas, etc... So perhaps what you are saying is, after cell inspection of the cells from the biopsy, the cells that were seen might not contribute to confirmation of crohns. Saying that you can have crohns with seeing granulomas is about as helpful as saying you can have a cold without seeing granulomas. If none were seen you still could have anything, and that hardly narrows it down. perhaps you have been wording too many claims lately, lol.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 10/25/2009 6:46 AM (GMT -7)   
UC, I forgot to ask or mention the prometheus tests. It would be interesting to see what your tests say.
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 10/25/2009 10:22 AM (GMT -7)   
It's probably always interesting as to what everyone's prometheus tests say LOL, they're not 100% accurate and they seem to confuse people (including the docs) even more LOL.

:)
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 10/25/2009 10:55 AM (GMT -7)   
Have you had them done pb4? I think my test results are right, they say I have crohn's. I had fissures, eye problems and mouth ulcers. They say some with UC get all this too but my diagnosis was colitis related to diverticular disease. I think they are wrong. I had inflammation on a CT scan long before I had divertiulum.
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 10/25/2009 11:48 AM (GMT -7)   
I didn't have to have the promethus test done, when my GI saw me (first visit with him was a sigmoidoscopy, ah the good old days when you didnt' have to wait weeks or months for tests), and with my perianal crohn's skin tags, before he even went in with the scope he knew I had crohn's, then of course he scoped me and from the pattern of inflammation he saw in my rectom and colon it was confrimed instantly that I had crohn's (I was shocked when I started coming to support boards and reading so many posts about people not getting a confrimed DX of either CD or UC because my experiance was an instant DX) but of course he followed procedure and did small bowel tests (which also confirmed CD since it was active there at the time as well) and stool tests.

I'm just saying that from reading many peoples experiance at support boards that the promethus test isn't enough to confirm for many cases due to it's inacuracy based on what others have said.

:)
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 10/25/2009 1:30 PM (GMT -7)   
I had no idea there were gray areas with all of this but it sounds like even with biopsies and scopes, all our modern technology and they still can't always tell. I was a lab tech for 20 years, so naturally the blood tests intrigue me. It may be academic but I think having a positive test should tell my docs that I do not have diverticular colitis that it is probably crohn's. I also think I have some of the genetic markers of crohn's too from genetic testing I did as a lab tech. IF I would be a good girl and use my rectal meds, I'd probably be a lot better. I just fall asleep before putting them in I am so tired. Looks like the natural meds have worked well for you though. I have been meaning to get some of that propolis.
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 10/25/2009 1:37 PM (GMT -7)   
Yeah, it's sooo weird...I know there are distinctive differences between UC and CD, like the pattern of inflammation with CD being skipped with healthy tissues in between inflamed, the fact that typically with CD the inflammation can go through the many layers of intestinal lining but with UC being surfacable only..I'm so glad I was easily DX, I couldn't even imagine the added frustration of not have a confirmed DX must be...I do great with cortifoam when needed for my proctitis, once a night just before bed, it's the only rectal meds that help me when needed. Other than that I have to rely on the naturals I use, it's still not fantastic but it's better than what it was....you should satrt being a "good girl", it can get harder treat the longer you let it go.

:)
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 10/25/2009 1:56 PM (GMT -7)   
Yea, my job has been wearing me out lately and also I have not been getting enough sleep. My job stresses me out. When they hired me, they didn't tell me I would have to travel a lot in the car over long distances!!! I applied for another one two weeks ago and am waiting to hear if I got it or not. I am really starting to hope I get it because I feel these awful hours, travel and schedule really got me worn down. I came down with this after 2 years of a gruelling schedule. I have been looking for a job ever since. But, I need to slow down and take better care of myself regardless. Thanks for the chat pb4!
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's
 


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 10/25/2009 5:06 PM (GMT -7)   
It's so frustrating that so many people have trouble getting diagnosed... Sucks that the biopsy results aren't always conclusive. This disease is so complex and it seems to be different for everyone in the way it manifests itself. Did you doctor suggest anything else that he suspects it could be and has he run any blood tests? I was very lucky, because once they knew where to look (everyone suspected my stomach until I told them to check my intestines out - the majority of my pain is above my belly button, so it was a bit misleading), my diagnosis was very clear. I actually had a barium enema done first, and the guy doing it walked into the room midway through it and had to stop because of how bad my colon was, and told me that he was almost sure it was Crohn's. After that, my scope & biopsies were also basically textbook, and my blood tests for CRP and all that came back accordingly as well (my doctor told me that not everyone's CRP is elevated who has Crohn's). I feel very fortunate, but I have read so many posts on here about people who took forever to get diagnosed because of things like this. Stay patient!
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