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Help for IBD

Hey everyone, I'm in desperate need of help after finding this forum online and really hope i can get some advice.

This all started over i would say 2 years ago, started getting stomach cramps, bloating, blood in my stools, tiredness, constipation, diarrhea, feel sick. Recently i have also had a few ulcers in my mouth and mucus in my stools. So about a year and a half ago i was referred to the Gastro team to see what was going on, i had a conoloscopy and inflammation was found with nothing else, every time i have a done a stool sample it has come back fine even though i have had diarrhea and sometimes blood in my stools. I then had a endoscopy which came back with inflammation. I am now being referred for another Conoloscopy to rule out IBD they said today in a telephone appointment due to covid.

It feels as though i am just round in circles and not getting closer to a diagnosed answer ?

I have flair up that come and go, can be ok for a while then a few weeks it will start up again. The symptoms i have are always here and never chance. Not eating like i use to due to no appetite.

I'm at a lost cause and don't know what to do, if i had the money i would go private but i can't afford it.

Any help advice would be much appreciated please.

Thanks Gaz

  1. Hi , I'm sorry that you are feeling like you're going in circles and can't find answers! It can be hard to get a concrete diagnosis sometimes. In this article, we talk a little more about that: https://inflammatoryboweldisease.net/living/diagnosis-missed-colonoscopy

    I would personally recommend sharing these concerns with your doctor. I know it can be hard to bring up these questions, but it would be great if they could explain what they're trying to do for you. I also think it's vital for them to understand the pattern to your symptoms so they can give you some advice about to handle them. Who knows - maybe they'll be able to prescribe you something specific for those symptoms!


    Also remember that there is no shame in getting a second opinion. I'm not sure if that's an option for you based on what you said about private health care, but if it is, here are some resources around that: https://inflammatoryboweldisease.net/living/its-ok-to-get-a-second-opinion

    Please keep us updated on how you are doing!


    - Eshani (Inflammatoryboweldisease.com Team Member)

    1. Hi and thanks for your reply.


      So yesterday i had my second colonoscopy and they took 2 samples from the ascending colon and Sigmoid colon and have to wait for result.


      Do you have any idea why and what it could be from them taking biopsies from those two parts of the colon.


      Could it still be IBD Crohns, Colitis ?

      1. Hi @Gazza! In every colonoscopy I have ever had, the doctor has taken biopsies (and I am diagnosed with ulcerative colitis at this time with a possibility for Crohn's). It does seem to be a regular part of the process, but I think if you have questions about why the biopsies were taken, you should feel free to talk to your doctor about it. They should be able to explain exactly why those areas were important spots.

        - Eshani (Team Member)

    2. it does seem a little odd that they have found inflammation a couple of times but need to do more tests. I can understand how frustrating it is. You just want a diagnosis, so you can get treatment and feel better!
      I really hope this second colonoscopy can give you the answers you need to move forward! Do you have an appointment for it yet?
      ~ Sahara (Team member)

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