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.

:thumleft:

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

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.

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!

Pen said:

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!

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Was just about to start writing a post on it.

Nerple - Accidentally diagnosed sounds interesting. Do tell!

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)

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

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.

kss said:

Nerple - Accidentally diagnosed sounds interesting. Do tell!

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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.

i had about 6 different types of doctors tell me probably crohn's. mine was the opposite. i was the one in denial!

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

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!

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.

Acalculous cholecystitis.

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.

Everything but Crohn's

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.



:rof:

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!

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.

flowergirl said:

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.

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This made me laugh - like we are sitting around thinking up problems we might want. "I think I'd like diarrhea!"

kllyeve said:

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.

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me too! maybe same docs as we are both from edmonton

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.

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.

Mesenteric Lymphadenitis was the only other diagnosis I received... essentially a sore throat in my stomach.

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!

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

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.

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!

Cornfieldgal said:

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!

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With that criteria - I wouldn't have been diagnosed either! And I am sure we are not alone! :rosette2:

Neither of my children had diarrhoea as a symptom. Their bowel habits remained grossly normal in the lead up to diagnosis.

Dusty.

Grumbletum said:

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.

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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...

I've been many years without diagnosis.
One of the doctors suggested I had anorexia, which is VERY unusual in a man.
Later a doctor found an ulcer (just one) in the duodenum, and that was the peak of the iceberg.

i was never misdiagnosed. i had been bleeding and went to the PCP. Crohns was the first thing she mentioned. mainly because of my family history...but, as i've said, my PCP isn't the smartest doctor around, so it did surprise me. haha.

I had pancreatitis and gallstones ( had the gb removed )
Then diagnosed with ibs for 8 yrs
Then duodenitis ( after endoscopy)
Then gastroenteritis ( after many er visits just a blood test an off home)
Told it was all in my head
Stress , anxiety , have some anti depressants ( f*** off mate !!)
Told I was eating the wrong food , drinking too much tea .
Then not eating enough.
( well duh Im in agony I can't eat a thing what the hell do u expect !!)
Finally diagnosed with crohns 2010 after ct scan , colonoscopy , pill cam .
Yay now my life will start to get better (not lol)
Jen xx

Spastic colon, duodenal ulcer, hypersensitive stomach, constipation, hemorrhoids and the flu (about 6 times in 5 months). Then I was hospitalized with "appendicitis" even though the pain was on the wrong side and my CBC wasn't showing an infection. I had a high fever and was in terrible pain. They removed my appendix, even though it was healthy, put me on IV antibiotics and gave me c. diff. Then they tried to blame that on me!! I was like, "well you guys gave me the antibiotics, I didn't buy them over the counter or take them for recreation!!" Then they sent me home, then I got sick again, then they shipped me to a different hospital where I found a good gastroenterologist that diagnosed me.

brooklyn23 said:

Mesenteric Lymphadenitis was the only other diagnosis I received... essentially a sore throat in my stomach.

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My daughter was diagnosed with this! She was in terrible pain. It was awful!! I worry about her getting Crohn's but so far, so good.

I was originally diagnosed with severe dysentry (really?) by an ex army doc and given morphine and kaolin to drink.EEK. Surprise surprise no better (tipped morp down drain) another doc said I was pregnant (no test done) THEN I had malaria (hadn't been anywhere to get that one) THEN I had the H Bug???? Finally diagnosed when hospitalised with severe dehydration. My first diag was UC then years later changed to CD.

Cornfieldgal said:

...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!

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And yet I was told that 20/day is "just normal for some people."
I wasn't misdiagnosed -- I was sent home with a dx of "no problem!"

Constipation and gas was my first diagnosis, by the local pediatrician I always go to... Blood was no concern, and she acted like it was a common sort of issue. She gave me miralax and colase, and even preparation-H suppositories to use. Those were some yucky days xP
Then, after nothing was better and everything was worse, they thought it may be a hemmorhoid or polyp. It wasn't until I got a colonoscopy and endoscopy (which was about a week after I got sick with something else, triggering a downward spiral I'm still pulling out of) that anyone had any idea Crohn's was going on. It's in my family history, but it just wasn't quite considered until it was getting reeeally narsty. Even the GI doctor at JHH wasn't expecting it.

I was just diagnosed 13 days ago.

However, I can recall GI issues over the last 20+ years that are now clearly Crohn's related, I just didn't know that not everyone felt the way I did. When I was young (teenage years) my parents said I was makinng it all up. In my 20's I just assumed they had been right or that everyone felt the way I did and that it was nothing. At 29, I was diagnosed with Crohn's by a doctor in Houston but my parents felt I should get a 2nd opinion so I did...that doc said no way...said it was just IBS and that I was causing it all on myself and needed therapy and not medical treatment. Now, finally, at 38 It has been given a name and validity....I always knew I wasn't nuts!

Research Result - What Was Your Crohn's Misdiagnosed As?

I have posted an analysis of the results so far in this thread. You can find the results posted here http://diyehr.com/

Specifically the results are in the Research Category

You can find the full analysis with nice colorful charts on the blog but here is a summary:
> There is a total of 98 diagnoses.

> 4 of the 27 (15%) had no misdiagnoses. They were diagnosed correctly the first time they sought medical attention. Two of those 4 (50%) had a family history of Crohn’s. The other two didn’t mention family history.

> The average number of misdiagnoses is 3.6. This means that if you’ve been diagnosed with Crohn’s then the number of different misdiagnoses you’ve had is probably between 3 and 4.

> There are 37 different categories of misdiagnosis.

> In the raw count the most popular misdiagnosis is IBS (14%) followed closely by Gastroenteritis (13%). The flu was third (9%).

> When depression, “psychological”, stress, anorexia, and anxiety are grouped together as “Psychological” then this becomes the most popular misdiagnosis (16%).

> If the data is further grouped such that each of the single and double responses are put in an “Other” category then this becomes the biggest group (21%).

> I’ve found the above result regarding “Other” to be surprising. An explanation could be that the number of times IBS or Gastroenteritis, for example, was diagnosed ended up being under-counted. This could happen if a respondent recalls the time they were misdiagnosed with “Bad Gas” but doesn’t necessarily recall just how many times they were uniquely misdiagnosed with IBS or Gastroenteritis. Further study would be necessary to gain more clarity. A well worded survey and a larger data set could get a better result.

> Also notable is the flu category which constitutes 9% of the misdiagnoses. It would be interesting to know how many other diseases are mistaken for the flu.

> Another interesting study would be to survey the people who were diagnosed correctly the first time. What were the steps the healthcare practitioners took? What type of healthcare practitioner saw them? And is 50% a representative number of those who disclosed they had a family history of Crohn’s? I would conjecture that a significant number of first diagnoses have a family history of Crohn’s.

Wheni first found out I had crohns they thought it was my appendix.

I can't even remember all the things I was misdiagnosed with. I was told it was food poisoning several times, stress/anxiety, anorexia, my period (yeah, that one cracks me up!), all in my head and attention seeking behavior. It took at least 10 ER visits and 4 in patient stays for me to get diagnosed, but that was only after my mother demanded they do a colonoscopy. But I was diagnosed in 1987, and I think back then, they didn't take my symptoms seriously because I was a young woman complaining of diarrhea and pain.

nice chart. i was one of the ones correctly dx, and i forgot to mention i had family history, if that info helps.
i saw a bunch of different types of drs, as i went to different ones as different symptoms arose. i went to the ER for mouth ulcers, then an internist, then an ENT, who noticed i had family history and sent me to GI. biopsies came back normal. went to oral medical dr. then got fistula, went to 2 different ob/gyns, who referred me to a different GI, tentatively dx me with crohn's, went back to hometown GI who did another colonoscopy, still normal results but still inflamed, and with all other symptoms concurred with other GI was crohn's.

took 5 months total.

but i also didn't have abdominal pain, diarrhea, or constipation.

Hi flowergirl. That's very helpful. Thanks! I'll do an update when there's enough info. I'll certainly make the appropriate updates. So now it's 75% of first diagnoses have family history.

Thanks for the complement on the chart. I'm trying to figure out how to make them better looking for the web. The My Life On Drugs is sort of fun to look at but it can't be seen very well yet. The site is still very young (like 3 weeks I think).

Thanks again for the additional info.

I was medically discharged from the Army with Chronic nausea and pain with unknown etiology. This was 5 years ago. Just got diagnosed after pain hit me really hard in June. Admitted twice to the hospital. After pill scope and 3 colon scopes, I was diagnosed.

Can any other diseases cause inflammation and ulcers in the ileum?

mike316atl said:

Can any other diseases cause inflammation and ulcers in the ileum?

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Lots can, all you need is a bacteria. Bacterial overgrowth, yersinia <something>, there's plenty more.

I was diagnosed from the start. But for crohn's what does that mean, we're still not 100% sure about the real cause, we might all not even have the same disease when it comes down to it.

Interesting data! I would love to see what a formal survey would tell. I was misdiagnosed several times, and have no family history and do not test positive for the gene. However, several years later, my cousin was diagnosed with UC and now they think he may have Crohn's. He had toxic megacolon and had to have his colon removed and almost didn't live. But, now the disease has crept into his ileum, so Crohn's! I dont know if he was misdiagnosed or not. I should find out.

I'd like to see a larger study, too. One with a well worded set of questions (which would be a little difficult because of how different people's experiences are). If there's enough responses though the data won't end up being any different (statistically speaking). It'd be great to get about 100 people just tell their diagnosis story with a lot of detail. If there's any suggestions about how to get the community to participate I'll happily do the analysis.

And I looked as best I could in the medical literature and really couldn't find anything. But I'm not that familiar with medical literature searchers. It'd be really nice to compare these results to something. But it's also possible nobody's done it before and that's why I couldn't find anything.

3 misdiagnosis over the years Milk allergy, Gallbladder and IBS.

Great - Thanks for the input. Milk allergy is a new one for the 'Other' category!

As a kid I was told I had appendicitis then milk/lactose intolerance. As an adult, when I presented with a peri-anal fistula in 2001, the surgeon suspected I had Crohn's disease, but when all of the biopsies came back negative and my colonoscopy was inconclusive, searching for other possibilities, he asked me whether "I had been inserting anything in there." He then enquired about my sexuality and I had to put him straight, that no, my ass was not in that state from getting f*****! I was later diagnosed with Crohn's in 2005, basically because there was no other explanation for the problems I was having.

Wow, that's incredible. Are you familiar with the story of the high school girl who diagnosed herself? Her pathologist just wasn't very good... Here's the link.

Anorexia, "a nervous condition" (wth did that mean?), ovarian cysts, irritable bowel syndrom, colitis, gastritis, and ulcerative colitis. It's like the doctors went through a list of illnesses that affect the digestive tract and kept guessing until they got it right.

I think there was someone in the original group who mentioned the same thing: "a nervous condition". I counted it in the "Psychological" category. Thanks for the input.

I didn't get a wrong diagnosis, the doctors said, "we don't know what's wrong with you". Then 14 long years of severe diarrhea and 4 doctors I finally got a diagnosis of Crohn's. :dance:

Misdiagnosed

My son was diagnosed as having cystic fibrosis. He had a sweat test that was a 70 and another was 72 which indicates c.f. We later found out he did not have it after doing genetic testing. The gastro. said it was a false positive because he was so malnourshed and malnutritioned.

Surgeon intially put anorexia as a possible cause of pain & him being underweight.

Surgery confirmed crohn's when he has a 12 inch resection of his small and large intestine. So much inflammation/narrowing, one section had an opening the size of a pencil.

It took 7 years to get a diagnosis. Since surgery in March, he is doing great and in no pain and finally gaining weight. Aug. 2010 he weighed 88 pounds. He now weighs 133.

Kathy

Wow, that's excellent. I also had surgery. It was the best thing that's ever happened to me. I'll add you to the data collection and repost the analysis once there's more data. Thanks!

Misdiagnosed for two years with IBS. I was very anemic & on finding this I was hauled into hospital sharpish.
I'd lost a lot of weight & I'm small anyway so my bones were starting to protrude. Vomiting & feeling awful etc.
I kept going back & finally eventually & Dr did blood tests & the results were the turning point in diagnosis.
Rgds
Grant

Ok, I know I took my time but here's the link to the research results: Crohns Diagnosis Stories/