We learn from others mistakes, namely, doctors that have had the tough task of trying to treat IBD for their patients, as each case is so specialized and there’s never 1 right, concrete answer for treatment.

Here are all my “Doctor Fails” throughout the course of treating my Crohns, or Colitis, or whatever the hell it is I have. I’m sure some of you will read them and recall your own experiences in retrospect, like “Huh. Yeah. That’s what they told me too.”

The objective is to document all these #doctorfails and others out there and post em here, so that others dealing with IBD can tell their doctors their concerns should any of the following situations be prevalent to their respective condition.

If you have a story of an epic doctor fail, email me at jothecrohn@gmail.com, or reply to this post in the comments, and I shall add it into my consolidated list of #doctorfails.


EPIC FAIL 1 Feb 2010, Emergency Room, 5 hour wait

You have Irritable Bowel Syndrome. Lower your stress and you’ll be fine.”   NO mention of Crohn’s Disease, or what that was.  NO mention of possible Colitis. NO mention of diet.

LESSON LEARNED: If doctor’s don’t know what the heck is wrong with you, they’ll say you have Irritable Bowel Syndrome.  ASK for a
colonoscopy and endoscopy, because you could just as easily have the symptoms of a more serious disease.


EPIC FAIL 2, Feb 2010, ER Visit Numero Dos, 6 hour wait

“You have Irritable Bowel Syndrome. Go see a stress counselor.”  I saw the stress counselor, and of course, it didn’t cure me…. because I DIDN’T HAVE IBS… derp!!

On my 5th trip to various ERs, the doc at at Northwestern University FINALLY recommended I schedule a colonoscopy ASAP.  I got it in March at a different hopsital.  Prognosis: Crohn’s Disease (though to this day, all the pathologists, GIs, radiologists, and doctors that have seen me throughout the course of the last 2 years still argue if I have Crohn’s or Colitis.)


EPIC FAIL 3 July 2010, Prednisone Fail

World’s Worst GI: “Start tapering down.  Go from 40mgs to 20mgs this week.”  My body has HORRIBLE withdrawl symptoms and I was still poopin 5-10x a day.  After he tapered me from the prednisone by 20 mgs, I got so sick- and then HE DROPPED ME AS A PATIENT!!!! GOOD RIDDANCE, asshole.  Learn to do your job dude.



EPIC FAIL 4 August 2010, Humira the Ignorant

New GI, Not a Bad Guy At All: “If you’re pooping more than 5x a day, you need this drug.”  He wasn’t wrong, but I wish he told me about diet and developing infections!  A year later, I was placed in the hospital for a week from a terrible Humira infection.  AND WHY DIDN’T HE TELL ME ABOUT THE IMPORTANCE OF DIET!  Why!!!

LESSON LEARNED: Gotta Take an Immunosuppressant? Fine, I understand.  But STILL WATCH YOUR DIET because it matters.  Chances of developing antibodies / reflaring are WAY higher if you eat whatever the heck you want, like I did like a dummy.


EPIC FAIL 5 September 2011, Let’s Start Remicade, and Eat Whatever You Want!

ER Attending Physician: “You’ll be a great candidate for Remicade.  And don’t worry about food, you can eat whatever you want.  You should respond well to this drug.” Ok.  I developed antibodies to the LAST TnF blocker in less than a year period.  I got a horrible infection and 104 degree fevers. I’m certain my diet played a factor, just based on my cramps and poop patterns.  You should NEVER tell an IBD patient to eat whatever they want! I understand diet isn’t proven to CURE IBD, and that’s TOTALLY fair.  But if you tell me it doesn’t play a factor, then I’m telling you you’re 100% WRONG, as an IBDer of 2 years and crappy flares and colon ulcers.



EPIC FAIL 6 September 2011, Chron’s? Colitis? Who the Heck Knows

Super GI: “You have Crohn’s.  You have Colitis.  You have Crohn’s Colitis.”  Good lord folks, which is it?  And what the hell is Crohn’s Colitis, lol! If I have UC, I can explore getting a collectomy and be done with this whole IBD thing.  If I have Crohn’s, that stuff spreads.  Can you tell me what I have so I can TRULY know my treatment options? K thanks.


If you have a #doctorfail, submit a comment below and I will add it to my consolidated list of #doctorfails. Check out what my crohnies gotta say about their experiences.

  1. 10/14/2011 at 8:12 am

    there seems to be no content on this page.

    • 10/14/2011 at 1:33 pm

      Hi Seth! Page is still under construction. I saw that you subscribed- thanks so much! When it’s updated, you should receive an email and I sincerely hope you check it out. Throughout my 2 years in dealing with Crohn’s, there have been a lot of epic doctor fails. 😉

  2. dsangela
    10/25/2011 at 5:46 pm

    Glad you finally got this page going! It’s hilariously sad, and it gets a really important message across: No matter what anyone tells you, educate yourself, because it’s your health that’s on the line. Hopefully, you won’t have any more entries to add to this page!!!

  3. 10/25/2011 at 6:57 pm

    I’m copying the comment I also left on your link on my FB page:

    My first GI doc was a total failure. First he told me I was “too young” to be having these symptoms – makes no sense anyone can get those kinds of symptoms (I was 25 – the typical age for onset of IBD). Then he told me I must be eating bad food – I told him I could hardly eat anything and he said “that’s not good.” Finally he was on vacation and I saw another doctor who suggested Crohn’s. I switched to a whole new office after that. New doc was very good.

    • 10/26/2011 at 2:28 am

      Glad you found a GI you were confident in and that you trust. Hope everything is working out for you, and that you’re in remission.

  4. meardonna
    10/25/2011 at 7:36 pm

    Lol! Yes, been there with nearly all of those! My epic fail was gp saying you just have pregnancy problems, the bleeding will be piles! Ok so the period style bleeding out my ass is piles! So that is why 2 weeks later I was rushed to a&e having 5 pints of blood transfused!

    • 10/26/2011 at 2:29 am

      YOWCH. EPIC doctor fail. For the ages!

  5. Amanda
    10/25/2011 at 11:17 pm

    Crohn’s can be broken down into sub-categories – ie. Crohn’s ileitis indicates that Crohn’s affects the ileum; Crohn’s colitis would indicate that your Crohn’s is primarily affecting your large intestine. Just so you know 🙂

    • 10/26/2011 at 1:02 am

      I would agree lady, except the crohn’s isn’t in my illeum or large intestine, based on the colonsocopy- the only inflammation is in my colon. So that’s why I’m not getting why I have Crohn’s colitis, lol. I guess they’re thrown off because I have a lot of Colitis symptoms too.

  6. Rebecca
    10/26/2011 at 3:47 am

    Wow, you had an amazing amt of bad advice in a short time. #5 is my fave too. 😀 I definitely heard the “eat what you want, diet doesn’t matter, take these drugs or you WILL get worse”. I asked for a nutritionist consult and the *GI* doctor said he didn’t KNOW one! Duh. Red flag #32.

    I don’t think that bit about surgery fixing colitis and Crohn’s “spreading” is really accurate. FWIW. But honestly, I am sort of over this “right diagnosis” bit other than to want it all off med records as a pre-exisiting. And there is no standaridzed diagnostic criteria for IBD; results are often inconclusive, and if you ask 10 gastros you will get 10 answers. I think treatment for any IBD (and celiac and the garbage term of IBS too…) is the same (diet, sleep, decrease stress, exercise, general holistic care) so just moooove in that direction.

    • 10/26/2011 at 6:15 pm

      Excellent post! Thanks for the input, and hear hear 🙂

  7. 10/26/2011 at 9:25 pm

    Upon my fast blood sugar skyrocketing then becoming unable to digest food for an entire week, vomiting undigested food hours after eating or drinkingI was variously told by my doctor that they didn’t need to do a white count and wasn’t able to see me for at least a week. If I was really that sick I should go to hospital. Hospital told me white count & abdominal imaging was normal, just a virus, rehydrated me and sent me home. 36 hours later I was back, febrile with a rigid abdomen and unable to eat or digest food or liquids for nearly 10 days so they finally called for a surgical consult.

    Within a half hour I was moved into critical care after labs & imaging studies showed a ruptured abdominal abscess and peritonitis that resulted in (I learned MUCH later) the removal of my terminal ileum and much quality time in the ICU fighting for my life. According to docs it was my appendix that ruptured due to diverticular disease and I would suffer no ill effects from it in the future. They denied I’d have any malabsorption problems, etc. and wasn’t diagnosed with Crohn’s Disease until about 10 years later following a near fatal G.I bleed at the site of the original anastamosis. 😦

    • 11/07/2011 at 8:16 pm

      This is beyond #doctorfail. This is more along the lines of #doctor-crash-and-burn. So let me get this straight. Your white count was normal? For the abdominal imaging, did you just take a basic xray, or did you have to drink stuff before i? And for the 10 day period, did you have fever?

      Also, did you know they were removing your terminal ileum? And is it safe to say that throughout the 10 year period of ambiguity, you had Crohn’s all along??? I’m really interested in this, because it seems you got screwed over, big time.

  8. Davissa
    10/27/2011 at 6:12 pm

    Wow, could I relate – this was a great read. Sometimes you just wonder where these doctors got their training, and why they’re so against using common sense. No, diet hasn’t proven to “affect” Crohns/Colitis,ect., but c’mon what idiot says “eat anything!” to a patient with ulcers in their guts? These diseases affect the whole body, GIs seem to ignore this. It’s why I feel more comfortable working with an ND, unless I’m in a bad flare/feel something is really wrong, and then it’s usually my ND recommending I go.

    • 11/07/2011 at 8:18 pm

      Dude, totally. “Eat anything” = “Disclaimer: I’m not a dietician so I’m going to GO OUT OF MY WAY to ensure that I have noooothing to do with recommending a diet to you that could actually help you.” Shame on doctors- the KNOW that diet plays a critical role in managing of Crohn’s. It’s basic Crohn’s 101.

  9. elizabeth
    11/28/2011 at 4:23 am

    i had tried remicade and the first infusion went well…. so we thought two weeks later i stopped breathing during the next infusion. my gi doc went to a convention and talked to dr. hanhouer about this and he said to try it again just put her on a slow drip. if i stopped breathing what makes him think i was going to stay breathing over another infusion!! talk about someone just wanting to profit over his invention. even if it ment i died.

    • 11/30/2011 at 3:15 am

      It’s so crazy that Dr. H would say something like that as advice to a doctor, without even knowing much about you, or talking specifically to you about your condition. Dr. H is supposed to be one of “THE” guys for treating Crohn’s in Chicago, right? Isn’t he a U of C doctor?

  10. Sechmeth
    12/08/2011 at 3:37 am

    Wow, I can totally rely. I lost 15 kgs, had horrible pain and bloating, but no D or C for a year…and still they kept telling me I have IBS…14 months later I found out I have stupid parasites. They didnt test it at all. Since only kids get these parasites (that was what the GPnr3 told me). They didnt have the notion, even though we had to boil our water for weeks after an earthquake. Now I have them chronically and cannot get rid of them.

    • 12/28/2011 at 7:38 pm

      Another classic case of “we don’t know what’s wrong with you, and we’re too lazy to do the leg work and find out, soooo… uh, you have IBS.”

  1. 10/25/2011 at 4:21 pm

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