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Confusing Things going on – need advice!

  • By SladerT

    Hey everyone,

    So I wanted to write here after I found another very informative post a while back about colonoscopy coming back clean when searching for IBD. I want to tell everyone a little about whats going on and see what you that have been diagnosis thing/feel about my situation.

    For the past 5 years I have gradually got worse (so since mid 20s) with diarrhea and horrible pains that come and go. A few years ago I ended up in the emergency room a couple times and the ER doctors said it was Gastritis. It happens every 6 months or so, and in between the ER visits is about 1-2 weeks of painful stool passings, and sometimes I cant even leave my house because I need to be around the toilet. First the doctors did the tests for IBD, my Calprotectin came back over 300 (when I wasn’t even having a “flare” up feeling because they took so long to get me in), along with Vitamin Deficiencies and my symptoms of pains, etc. So they sent me in for a Colonoscopy, which revealed no IBD traits in lower Intestine, but they found 4 massive hemorrhoids, which they had to do surgery on. I was OK for about a few weeks, then past winter ended up in the emergency room again, and then again a few weeks ago. They did an Ultrasound a few days ago and found a massive stone in my gallbladder. I meet with the doctor this week. The thing is, the colonoscopy was negative for Chrons. But 3 of 4 other tests have shown some things towards this, such as high inflammation in my stool. Now I have stones and have to have surgery on my Gallbladder. The doctor keeps hinting at IBD, and the ultrasound doctor yesterday said “I thnk its a couple things going on” when I told him “Finally, I am relieved to know its just Gallbladder!”, then he continued in a concerning tone “Have you had a colonoscopy?” and I told them yes, it was negative for IBD stuff, and he goes “Hmm. Well we need to look at something else but there is too much air in the Ultrasound to see what we need to see. So first we need to take care of the gallbladder problem now.”

    So what in the heck is going on! My sister has IBS, and I told my doctor “I want to get with a dietician, maybe its just IBS” but he said he doesn’t thing it is and thinks its inflammatory due to the tests and symptoms.

    Does any of this sound familiar to you that have been diagnosed? I am just frustrated because its been album 5 years since these episodes started and now they keep finding different stuff wrong, and now I have to have another surgery! Any help or advice would be greatly appreciated, because they keep ‘hiding’ this other diagnosis until further testing, and now, after another surgery.

  • By SladerT

    Also, I just noticed some of my words were autocorrected to the wrong spellings/words. Super sorry about that!

  • By thedancingcrohnie Moderator

    I can so relate to this. It is certainly so frustrating when you can’t get answers! Especially when you show signs of one thing, yet your tests come out negative.

    Have your doctors mentioned doing a pill cam? It may be that you have something going on in your small intestine rather than your large intestine. A colonoscopy only shows the large intestine.

    I would keep pushing for tests until you get answers. Here is an article that you may find helpful. It goes over diagnostic testing for IBD.

    I hope this helps some! Reach out if you need anything, we are here to support you.

    Always dancing,
    Elizabeth (team member)

    • By SladerT

      Thank you for your input and insight! I have met with the doctor yesterday. I had him give me all the diagnostic info etc (finally) so I can review it all. They first take my Gallbladder out, and have both IBD or IBS as the next step after the Gallbladder is fixed, because he said the symptoms are the same from IBD/IBS and that to Gallbladder. So I will wait to do further tests after that, and then then see whats next! Thank you for both of your feedback and info as it helps me know I am not alone in this confusion and how long it is taking for them to find the exact cause/diagnosis.

    • By Meagan Heidelberg Moderator

      Great, SladerT! Please keep us informed if you wish! Looks like you and your health team are on the right path.

      Warmly – Meagan, Team Member

  • By Julie Marie Palumbo Moderator

    That is so frustrating, yet unfortunately so common in the IBD community! I wish that you were able to get a proper diagnosis, but I would highly recommend going for a second opinion at another GI, as sometimes things get overlooked so a fresh set of eyes is valuable.

    And, I second Elizabeth’s suggested link, as there are more ways to test/diagnose that you may not have yet tried 🙂

    Stay well!

    –Julie (Team Member)