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New to this and looking for advice in diagnoses.

  • By j.dearborn

    Hello all, I will start by saying this is all completely new to me and typically I am not overly comfortable talking about this. With that being said, I am 25 years old and have had stomach issues for the last few years but always tossed it up as a weak stomach, it is what it is. Fast forward to this last April things got bad. Crippling pain, severe weight loss, achy joints, some blood in stool (minor), severe nausea, and fatigued on the “bad days” and even had a few fits between then and now of constipation for days (some of the worst pain I have ever felt) all while having 5-12 bathroom visits a day. I being as hard headed as I am, I still put it off and tossed it up as I have a bug and it will go away until about a month and a half ago. My best friend, who has had severe Crohns for a decade, realized what was happening and forced to make a GI appointment to understand what is going on as our symptoms are in line. At this point, I can say the Diagnoses has become almost as stressful as living with what is actually going on. I have had blood work, stool tests, colonoscopy, endoscopy, biopsies, and an ultra sound over the last month. All of which came back normal with the exception of finding that I “had” C Diff but it is no longer active and I must have beat it without treatment. The GI went ahead and stated that the symptoms are the same as I was having and as IBD and immediately started treatment for the C Diff even though it’s no longer “active”. I am getting the impression that they are chalking it up as that and now that I have actually committed to getting help I am being brushed off. If I “had” C Diff why am I still so sick even after showing not active? I feel like I am a crazy person that wants to be diagnosed with something that I do not have but I legitimately feel something is not right. I do not have another appointment for another two weeks after I finish the antibiotic treatment and just do not understand what is next after this as far as testing and diagnosing. What should I expect, what should I say at the next appointment, and most importantly am I crazy? This has all been a bit much for me as I am otherwise very active, until recently, and over all healthy. Just looking for thoughts and advice on what I should expect next. Thanks in Advance.

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  • By poonicorn

    Hi j.dearborn,
    Welcome to the group! I’m sorry you’re going through so much right now and your head is probably spinning with all the new tests and unanswered questions. The reason for all those tests is that Crohn’s and UC are different for everyone and there are so many other things that cause similar symptoms. Your story sounds a lot like mine and many others’ though. If you haven’t started a low fodmap or low residue diet yet, you may want to look into it as well as some “safe foods” for those days when your body just isn’t having it. I’ve found many articles and forums to be extremely helpful on my journey so far. You should check some out! You may also want to read about the pill cam. It’s helped quite a few of us when other tests have come back inconclusive. I wish you well on your journey and I want you to know we are all here for you, even when it feels like no one can understand or you have awkward questions. Chances are we’ve seen it, done it, or something similar. There are thousands of people helping one another understand the crazy things our bodies are putting us through.
    Best of luck,
    Poonicorn

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  • By thedancingcrohnie Moderator

    You are absolutely not crazy and I am so happy you reached out to the community.

    If you feel like something is wrong, it’s because it is. I learned this the hard way. Keep pushing for tests and if your doctor brushes you off, get a second opinion.

    As far as tests and how to get diagnosed, here is an article you may find informative: https://inflammatoryboweldisease.net/diagnostic-tests-and-procedures/

    Read it over and perhaps discuss some of these tests with your doctor.

    Let me know if there is anything else I can help with!

    Always dancing,
    Elizabeth (team member)

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