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Diagnosis with Crohn's but another doctor disagrees

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cindy9477
cindy9477

Hello!

I am 49 and had my 5 year colonoscopy in December.  I din't really know what Crohn's was but agreed to the meds (Uceris & Balsalazide).  After a week I had an allergic reaction.  My doctor then prescribed Imuran.  

I researched that medication and was shocked what the med was and what it does to your body.

I went for a second option with my Primary Care Physician and he doesn't seem to agree.  

I'm curious if a misdiagnosis for Crohn's happens often?  I have found at least 10 other things my systoms.  Even the pathologist didn't choose Crohn's as an option.

Really stressed about it and wanted some input from people that have been through this process.

Thanks so much for your time and have a great day!

 

0 likes, 7 replies

7 Replies

  • mary65495
    mary65495 cindy9477

    Posted

    Hello Cindy, diagnosis of crohns isnt yes or no ,it appears to me ,pathology said i had crohns but the GI said he didnt agree ( i thought the lab dosent lie) .perhaps doctors are reluctant to put the label " crohns " on patients unless Its really clear.

    It is really stressful for sure. If you have a support group near you go along to a meeting and talk to as many people as you can that way you will get a lot of info. thats difficult to get otherwise .

    All the best,Mary.

    • cindy9477
      cindy9477 mary65495

      Posted

      Thanks Mary!

      I have fought fatigue, bloating, diarrhea, constipation for years.  It is always random and doesn't seem to be from anything specific.

       My first colonoscopy in 2005 with all things being fine.  

      In 2006 I had an endoscopy.  It showed severe gastritis, moderate chronic active gastritis and Gastroduodenitis but my gastro doc never offered treatment so I assumed I didn't need anything.  (Back then I wasn't one to question anything & just assumed doctors would tell me if I needed treatment).

      In 2010 I had an upper GI  and several other tests that year.  A cumulative of all of these tests showed mild thickening  associated with cecum and ascending colon suggestive of inflammatory changes- possibly infectious in etiology or perhaps related to IBD and sacroilitis.  My IBD seriology  suggested colitis but the scope showed no obvious colitis.  Another upper GI showed mild wall thickening.

      In December 2016 I had an endoscopy and colonoscopy.  Colonoscopy showed Illeitus of the distal ileum with a polyp (doc called it a polyp but in the report he said ulcers so I'm not sure of the difference). The pathology report said not entirely specific but seems to be drug injury (NSAIDS) and 6 or 7 other possible causes. Another upper GI still showed mild narrowing.  The endoscopy showed same as 2010.

      Also, I found in my medical records from 2011 that showed I had Enterobacter species isolated abundant as well as moderate cysts of endolimax nana.  Basically 2 bacteria in a stool sample.  But once again no one mentioned treatment and I just let it go.

      SO, my primary care physician started treating my stomach issues this week and I feel much better.  He is also running other tests that I'm waiting on.  My GI doc started me on Uceris and Balsalazide.  I had an allergic reaction and then he want to jump to Imuran.  After a ton of research I am just not confident of the Crohn's diagnosis and at the very minimum if it is I can't imagine it's severe enoug to jump to such a harsh treatment.

      A lot more in between stuff but these are the basics of my last 11 years.  Any advice would definitely be appreciated.

      Love and hugs, 

      Cindy

       I don't have any pain, blood, strictures, blockages, weight loss, vitamin deficiencies, fevers, anemia, or any of the bigger symptoms of CD. 

  • stephaney28634
    stephaney28634 cindy9477

    Posted

    Hi Cindy, what are your symtoms?
    • cindy9477
      cindy9477 stephaney28634

      Posted

      Stephaney,

      My symptoms for the last year has been 99% bloating.  Randomly I have had loose stools but not often.  My gastro told me that I have had a positive IBD panel 'in the past' but I've looked back through 10 years of my medical records and didn't really find anything to back that up.  5 years ago I had a polyp in my colon which they removed and it was fine at just told me to have a colonoscopy every 5 years.  When I got the letter that it was time for my 5 year I went to see my gastro to let him know about my bloating symptoms.  He found an ulcer in my distal ileum and the pathologist did a biopsy but his report said could be from NSAID use.  My endoscopy 5 years ago showed peptic ulcers and so did this one.  Right now My regular doctor is treating my ulcers with 300 mg of Zantac as well as a PREVPAC.  I tested neg for H.Pylori but the PREVPAC can still treat the stomach ulcers.  After I'm finished with the PREVPAC I am going to get a second opinion.  I have a real problem taking the meds my gastro prescribed.  I have no pain, my sedrate levels have always stayed around 7, my stool tests have never shown inflammation as far as I know.  The only 2 things that have been high consitantly is my hemoglobin and hematocrit but those can be high due to smoking.  So, that's where I am at this point.  If I get a second diagnosis for Crohn's I am hoping to use natural products instead of the nasty meds.  Any advice would be greatly appreciated.  Thank you!

  • stephaney28634
    stephaney28634 cindy9477

    Posted

    Hi Cindy,  Have they taken bloods it would show inflammation in that.
    • cindy9477
      cindy9477 stephaney28634

      Posted

      I have Stepaney!  I've never had a positive CRP (C-Reactive Protein) test and my Sedrate has always shown low, never high.  My GI said I have had a positive IBD panel in the past but I can't find it any where in my files.  I wish he would have checked it again this time.  I also have panniculitis which could cause inflammation and my bloating symptoms so I think I will just take everything I have to another doc and see what he/she comes up with.  It's very frustrating for sure.
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