Share Facebook
Crohn's Disease Forum » Support Forum » Undiagnosed Club » Possible Crohn's, your thoughts please


05-28-2014, 06:28 PM   #1
catnap
 
Join Date: May 2014
Location: Dallas, Texas
Possible Crohn's, your thoughts please

Hello everyone,
I am in the process of diagnosis. Here is a brief summary of what has happened:
Last 2 years - chronic diarrhea
Aug 2013 - diagnosed with iron deficiency anemia
November 2013 - inflammatory bowel panel positive for Crohn's
March 2014 - norovirus so bad it almost did me in
May 2014 - upper endoscopy with biopsies - negative
May 2014 - pill camera showed no evidence of small bowel Crohn's but did show small erosions. Also there was a bulge in the ileum
Today - CT enteroscopy to assess bulge in ileum

So, after the CT today the radiologist came and found me and asked a lot of questions - do you have chronic diarrhea, etc. I explained the problems I've been having and he told me the area my GI doc is concerned about showed thickening of the small bowel consistent with Crohn's of the small bowel. He said he would write that in his report to my GI doctor.

Does this sound familiar to anyone? My husband thinks the radiologist may be wrong. I'm waiting to hear from my GI. I hate limbo. I expect you guys are the experts so I value any input you may have.
Thanks,
Cathi
05-28-2014, 07:45 PM   #2
Clash
Forum Monitor
 
Clash's Avatar
Welcome to the forum. It is a possibility with thickening of the bowel. I see you've had an upper endoscopy, have you had a colonoscopy?

My son has thickening at the ileocecal valve and upward in the terminal ileum. He was dx'ed 2 years ago by colonoscopy. Though the GI was unable to get the camera through the ic valve he did get through enough to get a few biopsies which confirmed the dx.
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
05-28-2014, 07:56 PM   #3
catnap
 
Join Date: May 2014
Location: Dallas, Texas
Thank you for the response Clash. I had a colonoscopy a year ago after having diverticulitis. The doctor did not do any biopsies at the time and said everything appeared normal with the exception of diverticulosis. This was a different GI doc. I moved on after he snickered at the inflammatory bowel panel done by my rheumatologist.
05-28-2014, 08:14 PM   #4
Clash
Forum Monitor
 
Clash's Avatar
I do hope you get some answers quickly. When do you expect to hear from your GI about the results of the test. I hope it is soon, waiting is the worst!

I'm sure others will be by with their experiences.
05-28-2014, 08:24 PM   #5
catnap
 
Join Date: May 2014
Location: Dallas, Texas
I expect he will call when he gets the report. I'm supposed to make a follow up appt too. I will call tomorrow.
05-28-2014, 08:28 PM   #6
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I hope you get answers soon. I am certainly no expert but I would lean towards Crohn's Disease.

2
__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
05-28-2014, 10:18 PM   #7
743
Senior Member
 
Join Date: May 2014
Location: us
?
2 ?
05-28-2014, 11:47 PM   #8
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I don't know why that keeps showing.

2
05-29-2014, 02:18 AM   #9
Jboy--
 
Jboy--'s Avatar
 
Join Date: Apr 2014
Location: Alberta
Hello everyone,
I am in the process of diagnosis. Here is a brief summary of what has happened:
Last 2 years - chronic diarrhea
Aug 2013 - diagnosed with iron deficiency anemia
November 2013 - inflammatory bowel panel positive for Crohn's
March 2014 - norovirus so bad it almost did me in
May 2014 - upper endoscopy with biopsies - negative
May 2014 - pill camera showed no evidence of small bowel Crohn's but did show small erosions. Also there was a bulge in the ileum
Today - CT enteroscopy to assess bulge in ileum

So, after the CT today the radiologist came and found me and asked a lot of questions - do you have chronic diarrhea, etc. I explained the problems I've been having and he told me the area my GI doc is concerned about showed thickening of the small bowel consistent with Crohn's of the small bowel. He said he would write that in his report to my GI doctor.

Does this sound familiar to anyone? My husband thinks the radiologist may be wrong. I'm waiting to hear from my GI. I hate limbo. I expect you guys are the experts so I value any input you may have.
Thanks,
Cathi
Cathi,
I'd definitely work on trying to get a colonoscopy, I too am undiagnosed and have been wanting this test in particular now for a while as I know it will be the defining factor. I've had quite a few people say that the colonoscopy is more effective at finding an IBD diagnosis rather than the endoscopy, hope you find answers soon
__________________
Jonathan
05-29-2014, 06:19 AM   #10
743
Senior Member
 
Join Date: May 2014
Location: us
I don't know why that keeps showing.

2
it's probably your signature which you can edit from setting.
05-29-2014, 08:37 PM   #11
catnap
 
Join Date: May 2014
Location: Dallas, Texas
I heard back from the GI doc today. He called me in for an appointment. It's either Crohn's or lymphoma. At this point I am hoping and praying it's Crohn's. I have 17cm of thickened small bowel, full thickness. He was a little baffled since the pill camera only showed small ulcerations. But when he realized I have been off and on prednisone for the last several years he said that makes more sense. Since I have also been on immunosuppressants for the last few years for another AI disorder he has to consider lymphoma. So I will have a surgical biopsy very soon.
05-29-2014, 08:42 PM   #12
Jboy--
 
Jboy--'s Avatar
 
Join Date: Apr 2014
Location: Alberta
I heard back from the GI doc today. He called me in for an appointment. It's either Crohn's or lymphoma. At this point I am hoping and praying it's Crohn's. I have 17cm of thickened small bowel, full thickness. He was a little baffled since the pill camera only showed small ulcerations. But when he realized I have been off and on prednisone for the last several years he said that makes more sense. Since I have also been on immunosuppressants for the last few years for another AI disorder he has to consider lymphoma. So I will have a surgical biopsy very soon.
I really hope it isn't Lymphoma for you Cathi! Hopefully it's Crohn's and it would make sense if prednisone and immunosuppresents worked in the past possibly. All the best.
05-29-2014, 08:58 PM   #13
Clash
Forum Monitor
 
Clash's Avatar
catnip, when my son had his colonoscopy the GI said he felt it was Crohns but definite diagnosis would have to wait on biopsy result to rule out other things, when I asked what other things he said lymphoma. I asked the GI nurse as we left and she said with my son's case the GI said visually he was certain on CD but that weekend I had to wait and worry those biopsy results.

I think others have gotton that response as well after colonoscopy, that they have to wait on biopsy to rule out lymphoma.
05-29-2014, 09:57 PM   #14
catnap
 
Join Date: May 2014
Location: Dallas, Texas
Thank you both. It's comforting to hear others have had similar things happen.
05-30-2014, 04:15 PM   #15
Jboy--
 
Jboy--'s Avatar
 
Join Date: Apr 2014
Location: Alberta
Thank you both. It's comforting to hear others have had similar things happen.
Aww you're welcome, I hope you get your diagnosis soon Cathi! I have my first GI appt this Wednesday morning coming up.
Reply

Crohn's Disease Forum » Support Forum » Undiagnosed Club » Possible Crohn's, your thoughts please
Thread Tools


All times are GMT -5. The time now is 03:51 PM.
Copyright 2006-2017 Crohnsforum.com