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Diagnosis Experience (so far)

  • By vanillaxox

    I first started experiencing severe stomach pains in September 2015. Doctors thought that this was likely Gastritis and gave me Omeprazole which I took for 2 weeks and this stopped the pains. After this I was tested for H pylori antigen (negative) and sent for an upper abdomen ultrasound which showed nothing.

    I continued to get these pains probably around 10-15 times between September 2015 and May 2017 and noticed that they were usually triggered by greasy foods or alcohol. Due to knowing that Omeprazole eased these symptoms I rarely visited the doctors with this pain and tried to cut these out of my diet where possible.

    In May 2017 I went to the doctors again so that the pains were documented and found that when they did tests, that my calprotectin levels were over 300 (my doctors only documented if the result was over 300 or under 100 so I do not know how much over 300 this result was) and redid the H pylori test again which returned negative. They asked me to repeat samples again in 3 months’ time and due to my calprotectin levels not being as high, so they did not take any further action.

    In February 2018 I started to experience excruciating pain in my lower left side which would not go away even when I was taking Omeprazole, so I went to the doctors again. My calprotectin levels were over 300 for the second time so they did some blood tests to find that I had a B12 deficiency, an iron deficiency and a folic acid deficiency so I was referred to a gastroenterologist with possible IBD. They also ruled out Coeliac disease due to tests being negative. I cut red meat out of my diet due to this triggering symptoms so doctors also said that this could also be why my iron levels are low as I was not anaemic.

    I had another abdominal ultrasound in April 2018, a colonoscopy & 8 biopsies in May 2018 and a barium meal in June 2018 which all came back with no results or signs of IBD – So I was signed off by the gastroenterologist with probable PI-IBS (Post infectious IBS) and told to go back the doctors once I was experiencing symptoms again.

    In November 2018 I went back to the doctors with pains again and had a calprotectin reading of 900, so was re-referred to the gastroenterologist. The issue I had was that due to a range being recorded rather than an actual figure in previous tests, they were unable to compare if reading was worse than previous times.

    A couple of days ago I had an endoscopy with there being no visual signs of IBD, although they did find a 4cm sliding hiatus hernia. They took 4 biopsies during the endoscopy but I have not received results for them yet (they take 4-6 weeks) and I am waiting to hear back after a referral for a camera capsule test & my blood test results. I know Dr. Google isn’t the most reliable source, but after reading things about it I just don’t think my symptoms match up and I still think that it could be IBD.

    I am 21 years old and I was just wondering if anyone else has had troubles with a diagnosis or if anyone else has had a similar experience to this. I am not asking for any medical advice as I am still yet to hear more details about my results and this is still ongoing, but I just feel like this whole thing is going backwards and forwards constantly and it is quite stressful.

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  • By Pam.Kingsland Keymaster

    Hi @vanillaxox , Thank you for taking the time to reach out and share your journey with us. It sounds like you’ve been through quite a lot and we’re so glad you’ve found our community!

    I know that there are many people here who can relate to your diagnosis troubles. This might be a helpful read for you: https://inflammatoryboweldisease.net/living/when-test-results-are-normal

    In a survey that we conducted, the community told us that getting a diagnosis can be difficult! 83% of respondents needed over 5 office visits or needed to see more than 1 doctor before they received a diagnosis and 57% of respondents were misdiagnosed prior to receiving their IBD diagnosis. You definitely are not alone!

    If you feel as though you aren’t getting the attention or answers you deserve, I always suggest getting a second.. or third.. or fourth opinion! Here’s an article written by an advocate about getting a second opinion- https://inflammatoryboweldisease.net/living/its-ok-to-get-a-second-opinion/

    I do hope others will weigh in to share some personal experiences. In the meantime, please keep us updated with how you’re doing! We’re all here for you while you go through this, and are happy to answer any specific questions you may have. Sending strength and warm wishes -Pam (team member)

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  • By Amanda Osowski Moderator

    Hi @vanillaxox,

    I definitely understand your frustrations! I had symptoms for 6 years before being diagnosed with Crohn’s disease. I had normal colonoscopies and endoscopies for so long but nothing resolved my symptoms. I was finally diagnosed with the Pill Cam (a swallowable pill which takes photos every few seconds as it travels through your digestive tract).

    I also have a hiatial hernia (discovered about two years after my Crohn’s diagnosis), so I feel your pain!

    Please stay persistent, you deserve relief!

    Thinking of you!
    Amanda (team member)

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