Other #DoctorFails from My Crohnies

STORIES FROM MY CROHNIES AND UC-ERS: OTHER EPIC #DOCTORFAILS

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Nicole A: “Mine? “Humira and Remicade are the same thing. Except Humira is more convenient because you administer it yourself at home.”

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Sherri from Specific Carbohydrate Diet For Life

“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.”

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Meardonna

“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!”

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Tiff from SCD Support Group

“My worst suggestion before my Crohns diagnosis, was a dismissal from my pcp to a pain specialist. Basically, he couldn’t understand what was wrong with me so he referred me to a pain management clinic where I would be on heavy pain killers. Seriously!? Sigh, I could go on but it’s enough to be a novel”

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Shelby

“I had one genius GI “specialist” tell me to “eat Gas-X like candy and drink Miralax like water.” Awesome advice, eh? His recommendations were hell on my colon! Then, I had a Chiro tell me to do MMS (chlorine dioxide) and this nearly killed me, literally (dropped 7 pounds in 2 weeks, BP dropped to 70/38). And those are just TWO of the many quack jobs I’ve unfortunately seen! :-(”

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Shari B

  • 1984 – it’s just nerves… take Vallium and sleeping pills! (I didn’t) 1990 – it’s just your lower bowel reacting to your female cycle. It will calm down in time.
  • 1999 – It’s nerves and stress blah blah blah 2000 – stress (liked this doc) “have you thought about getting a divorce?” (best advice from a doc yet.. lol! Cured my stress, migraine headaches and my bank account!)
  • 2005 – IBD, colitis finally Crohns 1 year later after scopes. During this time also had what I thought were drug interactions or seizures I thought and was told it takes the meds awhile to a just in you system, told twice. Saw my general doc and had EEG, CAT scan w/dye, MRI w/dye, ultrasounds and more. I found out that I had gallstones and had suffered 2 strokes! WOW! Switched GI doctor and was put on the 6MP.
  • ‎2008 – My sister’s husband was having sever headache and confusion and she took him to his general doc and he stated…. he most likely just had too much to drink yesturday and it will take time to clear his system. My sister didn’t buy it. She took him to the county hospital near by for a CAT scan and they found brain hemerage and stroke and did emergency brain surgery. When he got out of surgery there was no staff member that was on to follow surgeons orders to release the fluid pressure that happens. My sister had to do it and drain the fluid of her husbands brain herself every 2 hours or he would have died! She had to call one of her staff RN’s from the private hospital where she was head of nursing to come into the county hospital and help her care for her own husband! Talk about a lawsuit!!! My sis can tell you stories of over 35 years in the business that would peel most peoples socks right off. So could many long time RN’s. My point is…. if something doesn’t seem right get a second or third opinion!!

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HEIDRUN

“I have the same, Crohn’s Colitis, or colitis, who knows. But even during the 10 years that I was certain I had colitis I never would have considered total colectomy. Remicade put me into anaphylactic shock… Humira wasn’t approved because I had colitis, not Crohn’s, at that time :-/ Lucky for me, I must say in retrospect. And yes, I was told IBS at first… And my GI docs always say I can eat whatever I want or whatever I *felt* was doing me good. That feeling is not reliable while the wrong bacteria dictate your cravings, as we know. The worst GI doc fail for me was that my doctor kept prescribing mesalazine for 2 years while it was wreaking havoc on my kidneys (which he knew!). Thanks to him, I now have only 30 percent kidney function left and the best I can hope for is for it to stay that way. What an ass. When I chose to stop taking it, he made fun of me and effectively called me a hippie.”

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ROXANNE W

IBD specialist at nationally acclaimed hospital (not sure if I’m allowed to name it!) looks me straight in the eye and tells me “Diet has NO effect on Crohn’s”  REALLY?!?!??    I loved the letter she sent me after my 1 year followup colonoscopy that showed no polyps and NO EVIDENCE OF ACTIVE CROHN’S DISEASE.  She says she doesn’t think Humira is necessary at this point and she doesn’t need to see me until August.   I repeat:  REALLY!?!?!?!??  *smirk*
  1. S Samson
    11/07/2011 at 2:42 pm

    Took 2 years to diagnose me and I got told I deffinatly did NOT have Crohnes.
    Underweight and in constant pain and bleeding out the bum (nasty times & I was 12 at the time… too young to get Crohnes and the specialist insisted I was being neglected by parents)
    Finally another GI specialist said it was Crohnes and I was put on the usual set of drugs that lets face it, dont work.
    On lots of steroids a day and anti-flamitarys then went for surgery a year after it was diagnosed so now at 4 years in…
    Went for operation in 1 hospital and woke up a month later in a specialist kids hospital as a “complication” had happened and I’d died 3 times…. Thats 1 hell of a complication for what I was told was a routine Major operation….
    Now almost 20 years on with 1 ileostomy been then re-plummed and now they think my Crohnes has came back but I was told at the time that was it gone for good after my operation….
    And they wonder why I have no faith in them when I goto appointments now haha, do they ever read these forums???
    Bloody useless

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