Share Facebook
Crohn's Disease Forum » General IBD Discussion » What was your Crohn's (or Colitis) Misdiagnosed as?


 
10-20-2011, 07:44 PM   #1
kss
Senior Member
 
Join Date: Oct 2011
Location: Fort Collins, Colorado

My Support Groups:
What was your Crohn's (or Colitis) Misdiagnosed as?

What was your Crohn's or Colitis misdiagnosed as?

I was misdiagnosed many times, IBS, gastroenteritis, food poisoning, etc...
What I'm wondering is: Exactly how often this happens and what the misdiagnoses are. Is IBS the most common, or gastroenteritis or something else?

I've made a blog post for this with some details about my story. I've also gone ahead and made pie charts of my misdiagnoses. There's also a pie chart from another Crohn's patient who has a blog.

The link is here and I hope you find it useful. Please post your misdiagnoses in the comments section or reply to this post. Either is fine. Thanks! I will collect data and post results as we get responses.



http://diyehr.com/2011/10/19/what-is...sdiagnosed-as/

Last edited by kss; 10-20-2011 at 07:45 PM. Reason: typo
10-20-2011, 09:45 PM   #2
Nerple
 
Nerple's Avatar
 
Join Date: Oct 2011

My Support Groups:
I wouldn't say I was misdiagnosed, but after being diagnosed and learning of the disease I realized I likely had Crohn's for at least 5 years before being diagnosed, and I was diagnosed by complete accident.
10-20-2011, 09:49 PM   #3
Crohn's 35
Inactive Account
 
Join Date: Oct 2009
Hey Nerple welcome to the forum! We need to hear more from you, and others would like to see your STORY on how your crohns started and your life. Hope you join us!
10-20-2011, 09:57 PM   #4
Nerple
 
Nerple's Avatar
 
Join Date: Oct 2011

My Support Groups:
Hey Nerple welcome to the forum! We need to hear more from you, and others would like to see your STORY on how your crohns started and your life. Hope you join us!
Was just about to start writing a post on it.
10-20-2011, 09:58 PM   #5
kss
Senior Member
 
Join Date: Oct 2011
Location: Fort Collins, Colorado

My Support Groups:
Nerple - Accidentally diagnosed sounds interesting. Do tell!
10-20-2011, 10:27 PM   #6
archie
Senior Member
 
Join Date: Oct 2010
I was lucky enough to get a diagnosis of crohns disease with in the first month after complaining of symptoms by a prof in general surgery who had seen it a million times before and as I was lucky enough to get referred for a CT scan straight away. That said the very first locum GP I saw diagnosed gastroenteritis. I wouldn't call this a mis- diagnosis as that's what my initial symptoms presented as so it was just the first steps of an unfolding story which lead to the diagnosis of crohns so you'll have to put me in the section of your pie chart for no misdiagnosis please ( if there is one lol)
__________________
Archie

Diagnosed Crohn's 2010
ileocecal resection 2010
Meds: Nil and in remission

10-20-2011, 10:34 PM   #7
Jin
Member
 
Jin's Avatar
 
Join Date: Nov 2010
Location: Miami, Florida
Hmmm...

IBS, parasite, GERD, gastroenteritis.... Took some time to finally get to Crohn's. My doctors called me an alien, but I guess it's always easier to blame the PT lol
__________________
Dx'd w/ Crohn's in 2010
Past Meds: Flagyl, Librax, Asacol, Levsin & Entocort
Past Treatment: Pentasa 4x2 (1/5/2012) didn't help
Last Treatment: Remicade & Prednisone (8 month trial... To no avail)
Supplements: Probiotics, Vitamin D, Fish oil, and B12

"When you wholeheartedly adopt a "with all your heart" attitude and go out with the positive principle, you can do incredible things."
- Norman Vincent Peale

Last edited by Jin; 10-21-2011 at 12:01 PM.
10-20-2011, 10:49 PM   #8
kllyeve
Senior Member
 
Join Date: Jun 2011
Location: Edmonton, Alberta

My Support Groups:
I was misdiagnosed as IBS for years. As well as every time I complained of constipation I was tod to drink more water ans take more fiber.
10-20-2011, 11:18 PM   #9
Nerple
 
Nerple's Avatar
 
Join Date: Oct 2011

My Support Groups:
Nerple - Accidentally diagnosed sounds interesting. Do tell!
Essentially, in an unrelated matter I was being tested for polyps that ended up just being a hemorrhoid, but the GI even after discovering the hemorrhoid decided to be thorough and I walked out of my next appointment diagnosed with Crohn's.
10-21-2011, 08:47 AM   #10
flowergirl
Senior Member
 
Join Date: Sep 2011
Location: florida
i had about 6 different types of doctors tell me probably crohn's. mine was the opposite. i was the one in denial!
10-21-2011, 09:06 AM   #11
mizgarnet
Senior Member
 
Join Date: Dec 2010
Location: spartanburg, South Carolina
I was dx'd during an unrelated surgery. The doctor found the bad part, called in a different surgeon, and I woke up with a dx of Crohns pending biopsy results. That was in 1991. In the past 3 yrs, I have had one surgeon that now says he really does not think it is Crohn's.

Wendy
__________________
DX'd - 1991
10-21-2011, 09:20 AM   #12
Beach
Forum Monitor
 
Join Date: May 2011

My Support Groups:
I've had several diagnosis from doctors - IBS, celiac, microscopic colitis (had to remind the doctor I wasn't an old lady on that one) and a few mentions of crohns being a possibility. Used to joke that if I paid the doctors enough I could have my disease named after me!

Last edited by Beach; 10-23-2011 at 02:09 PM.
10-21-2011, 09:42 AM   #13
chrisnsteph1022
Senior Member
 
chrisnsteph1022's Avatar
 
Join Date: Jan 2011
Location: Tennessee

My Support Groups:
I was accurately diagnosed after testing for the usual suspects (parasite, infection). I researched online and came across Crohn's (had never heard of it). I suggested it to my doc and he sent me to a GI for a scope, where it was confirmed. It only took about 6 weeks to get a diagnosis.
__________________
Stephanie
dx 2003
Remission 2004-2010
Moderate/severe flare through entire colon 12/2010-10/2012
Lialda, omeprazole, Remicade, Methotrexate, Folic Acid, Questran
Been on Asacol, prednisone, Apriso, Imuran, Entocort and Cimzia
FB support group
10-21-2011, 11:41 AM   #14
littlemissh
Senior Member
 
littlemissh's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
Acalculous cholecystitis.
__________________
Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
10-21-2011, 02:39 PM   #15
Cat-a-Tonic
Super Moderator
 
Cat-a-Tonic's Avatar
 
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
I'm still not fully diagnosed, although my GI has recently said that I've got some type of IBD. When I first became ill, I was told it was viral gastroenteritis. During my second flare they said it's possible my gastroenteritis came back. During my third flare, they finally started doing some testing. Various doctors have told me things such as it's all in my head or I'm just depressed, and of course I've been told by several doctors that it's IBS. It wasn't until I tried and responded to pred that they started seriously investigating me for IBD.
10-21-2011, 03:32 PM   #16
breezy822
New Member
 
Join Date: Oct 2011
Location: Gastonia, North Carolina

My Support Groups:
I was told so many things, it almost became laughable. I was told it was my thyroid, parasite and even AIDS to just name a few. Since my Crohn's first showed it's ugly head while I was pregnant with my son, I had one doctor tell me I was just depressed about being a single mom and needed to "snap out of it". One genius at a well known medical university here in NC, even told me that I was just anorexic.

I just looked at him and said, "You think? I mean geez, I only weigh 82 pounds now and have massive pain. You're right. I am probably anorexic, but something is causing it." I was so frustrated. They did so much blood work, that my veins in my arms no longer was an option for them to drawn blood.

It took almost two years for them to figure it out. By the time they realized what was going on, a part of my bowel was almost completely closed and no medicine would touch it. I ended having a bowel resection soon after.

It has taken me a long time to trust doctors. I am so blessed that I have finally found one that I trust and feel like listen to what I have to say.



__________________
Breezy822
10-21-2011, 03:39 PM   #17
glory_h
Senior Member
 
glory_h's Avatar
 
Join Date: Sep 2011
Location: Portland, Oregon

My Support Groups:
Depression, anorexia - for a few years no one would take me seriously. They thought I was just going through "teenager" stuff. Well of course I was depressed! I felt like crap all the time!

Was sent to an infectious disease doctor and a few others I can't remember before getting sent to a gastroenterologist.

I actually heard by PCP say to an intern, right outside my door, "Her mom is psychosomatic, too, so there is probably nothing really going on." Never went back to him!
10-21-2011, 04:31 PM   #18
flowergirl
Senior Member
 
Join Date: Sep 2011
Location: florida
i can't believe how many people were told it's all in your head. yeah, because people fake diarrhea. if i was going to fake something, it wouldn't be that.
10-21-2011, 04:39 PM   #19
glory_h
Senior Member
 
glory_h's Avatar
 
Join Date: Sep 2011
Location: Portland, Oregon

My Support Groups:
i can't believe how many people were told it's all in your head. yeah, because people fake diarrhea. if i was going to fake something, it wouldn't be that.
This made me laugh - like we are sitting around thinking up problems we might want. "I think I'd like diarrhea!"
10-21-2011, 07:10 PM   #20
Denise
Senior Member
 
Join Date: May 2011
Location: Edmonton, Alberta
I was misdiagnosed as IBS for years. As well as every time I complained of constipation I was tod to drink more water ans take more fiber.
me too! maybe same docs as we are both from edmonton
10-21-2011, 07:39 PM   #21
jesseiam2
Member
 
Join Date: Aug 2011
Location: Quinton, Virginia
Ulcers, mine was an ulcer for 6 months (and over 50 pounds of weight loss). Then I demanded to see my own doc and not a Nurse Practicioner and he said it was time to take a look inside with a colonoscopy. Crohns was diagnosed right after.
__________________
Crohn's sufferers in Virginia: http://www.facebook.com/groups/142471302509448/ - join us!
10-21-2011, 08:26 PM   #22
StepfordWife
New Member
 
Join Date: Oct 2011
Location: South Australia, Australia
I remember about 7 years ago when my symptoms first appeared and went to see a male dr about it, telling him my tum was up like a balloon and I was unable to pass any "wind" and was in agony. He said the gas would come out by itself during the night and kept on saying "oh your poor husband" (for having to put up with my gas). Supportive! Up until this year I was told "IBS". My aching joints were caused by "depression", the spasms in my oesophagus and throat "anxiety". This year I demanded a endo/colonoscopy and then finally the truth - Chrone's.
__________________


Prednisone 15 mg tapering 5mg a fortnight....

Vit B, Vit D, 5HPT, DHEA, Mastic Gum, Yucky Fish Oil, Slippery Elm, Glutamin, Acetyl- L-Carnitine and Xanax as needed!
10-21-2011, 09:52 PM   #23
brooklyn23
Senior Member
 
brooklyn23's Avatar
Mesenteric Lymphadenitis was the only other diagnosis I received... essentially a sore throat in my stomach.
10-21-2011, 10:38 PM   #24
Cornfieldgal
 
Join Date: Jul 2011
Location: Waverly, Iowa

My Support Groups:
Let's see I was told I was just anxious so they gave me valium, antidepressants, anti-anxiety drugs, and told me to look into meditation. I was also told I had IBS, a nervous stomach, ulcers, gallstones, salmonella, and the flu. Never did fill the psych scripts cause I knew it wasn't in my head. Funny thing is I was talking to a doctor friend of mine about diagnosing Crohn's and he said he doesn't even consider Crohn's unless the patient has 11 or 12 BMs a day. Under that criteria I would never have been diagnosed!
10-21-2011, 10:48 PM   #25
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Sarah was originally diagnosed with Abdominal Migraine and then Pancreatitis.

Matt was diagnosed very quickly and no mistakes...no doubt as a result of Sarah's legacy.

Dusty. xxx
__________________
Mum of 2 kids with Crohn's.
10-22-2011, 02:40 AM   #26
Grumbletum
Senior Member
 
Grumbletum's Avatar
 
Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
First diagnosis was grumbling appendix. Thickening in the small bowel eventually showed when I had an ultrasound to see if it was an ovarian cyst causing the pain and recurrent UTIs. Barium FT confirmed it's Crohns.
__________________
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
10-22-2011, 04:13 AM   #27
carolhew
Senior Member
 
carolhew's Avatar
 
Join Date: Jun 2011
Location: Phoenix, Arizona

My Support Groups:
My first diagnosis was IBS, later IBS and divirticulosis and finally Crohn's. 15 yr journey, just glad to know it is not in my head!
10-22-2011, 04:57 AM   #28
StepfordWife
New Member
 
Join Date: Oct 2011
Location: South Australia, Australia
I was talking to a doctor friend of mine about diagnosing Crohn's and he said he doesn't even consider Crohn's unless the patient has 11 or 12 BMs a day. Under that criteria I would never have been diagnosed!
With that criteria - I wouldn't have been diagnosed either! And I am sure we are not alone!
10-22-2011, 06:07 AM   #29
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Neither of my children had diarrhoea as a symptom. Their bowel habits remained grossly normal in the lead up to diagnosis.

Dusty.
10-22-2011, 08:32 AM   #30
archie
Senior Member
 
Join Date: Oct 2010
First diagnosis was grumbling appendix. Thickening in the small bowel eventually showed when I had an ultrasound to see if it was an ovarian cyst causing the pain and recurrent UTIs. Barium FT confirmed it's Crohns.
Actually that reminds me, I was 1st diagnosed with appendicitis due to the rebound pain and increased inflammatory markers (I'd forgotton!!) I was sent home from hospital 2 days later after being told I was fine even though I still had all the same symptoms and my CRP was actually going up. 1 month later my bowel perforated...
Reply

Crohn's Disease Forum » General IBD Discussion » What was your Crohn's (or Colitis) Misdiagnosed as?
Thread Tools


All times are GMT -5. The time now is 01:06 PM.
Copyright 2006-2017 Crohnsforum.com