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Undiagnosed, IBD 21-year-old

Just looking for some guidance and support.

IBD symptoms begin

I have an 18-month history of bowel problems. Aug 2019 I had my appendix removed but scans showed I may have the start of IBD, as my appendix didn’t show any abnormalities and when taken out no inflammation was detected.

I had ongoing symptoms of lower right abdominal pain, blood and mucus in stool, and generally unwell. January 2020 I had a colonoscopy which showed ulceration of the terminal ilium and was told I had a Crohn's disease bowel appearance - however, biopsies came back clear.

I had ongoing symptoms and trips to A&E, had a repeat colonoscopy in March before Covid, and was told there was nothing there!! Had ups and downs over the summer, it was either symptoms or no symptoms.

Complications arise

August 2020 I became very unwell and was taken into the hospital with suspected bowel instruction - I was in and out with just supposedly a viral infection - the second time I went in, they had done an abdominal X-ray and found thumb printing on the bowel and the CT showed extensive large bowel inflammation - started on steroids.

2 days later went back in with ongoing symptoms and excruciating pain. Had a stool culture to find that I had campylobacter - this was evident in the terminal ileum, the same place where ulcers were found in January.

Unclear IBD diagnosis

The consultant at the time suspected I have an underlying bowel disease but another consultant didn’t care and just discharged me. Ongoing consultations with doctors etc. I have been told on numerous occasions by many consultants that I have most likely got IBD, but no definitive answer.

Looking for advice really on the next steps. I’m from the UK!

  1. Hi tp10020! Thanks for sharing your story with us.

    We aren't allowed to give medical advice over the internet (for your safety), however, I'm hopeful that others in the community can share if they have had similar experiences that might offer a fresh perspective.

    Really sorry to hear that you were dismissed by some consultants. It's really frustrating when you're doing the right thing by seeking care and you're only getting the run-around.

    I know it doesn't change how you may be feeling, but unfortunately, your story is familiar in that getting a clear IBD diagnosis can take time - so please know you're not alone.

    Let's see what the rest of the community has to share! Thanks for your question.


    Reggie ( Team Member)

    1. Thank you reggie,
      Of course I totally understand Boone can give medical advice, more for advice of how people have tried to take control of similar situations.

      Thank you very much for sharing this!

  2. Thanks for sharing. I once had camplyobacteriosis and I also have Crohn's disease. The former made the latter much worse temporarily.

    Hard to say beyond that what to do except to suggest further testing.

    I also had a long road till I was given a diagnosis. Different doctors gave me different perspectives. You can read my blogs on this site to learn more about that, as one of them covers this issue specifically.

    Hope you feel better and get to the bottom of this.

    Be Well,
    Matt (Team Member)

    1. I am sorry you are suffering, . The best advice I can give is to not stop demanding answers and seek second (or third or fourth!) opinions if necessary. While doctors know a lot about the diseases, they do not know our bodies better than we do so when something is off, do not stop until you get an answer.
      Don't feel like you're being an inconvenience or annoying them by questioning their expertise. I have seen numerous patients go misdiagnosed or undiagnosed for too long so my best advice is to not stop until you get a proper diagnosis and don't let any doctor make you feel like you cannot ask all of the questions you want.

      --Julie (Team Member)

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