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IBD or IBS - Feeling frustrated 😕

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crml76466
crml76466

Hi. I've had symptoms of diarrhoea, pain, blood in stool, fatigue etc intermittently for a long time. I was finally referred for a colonoscopy and endoscopy. The colonoscopy showed inflammation in my terminal ileum which was chronic in nature and also in my rectum. I also had a small number of ulcers in my terminal ileum too. My GI said the biopsy was clear and I have IBS?? I thought IBS didn't cause ulcers and inflammation? Feeling fobbed off... What do you think?

0 likes, 6 replies

6 Replies

  • IndieHannah
    IndieHannah crml76466

    Posted

    Hi

    I'm with you.....I think you have been fobbed off!!

    What do they need to find to diagnose Crohn's for goodness sake?

    I think you should perhaps ask your GI for a full and detailed explanation for the diagnosis and be specific....ask what they need to find to confirm Crohn's.

    Have you been offered any treatment or follow up with a dietitian??

    I feel for you......often the colonoscopy comes back clear, but the disease is raging away elsewhere! It can take years to get a confirmed diagnosis in some cases.  Mine took 5 years and consequently was so diseased and untreated I had to have emergency surgery only to discover a huge area in the small bowel riddled with Crohn's!!

    I really hope you get some clarity on their findings and a proper diagnosis soon.

    Hannah

    • crml76466
      crml76466 IndieHannah

      Posted

      Thank you for your reply smile I honestly don't know what else they're looking for? Chronic inflammation but only a few ulcers yes, I thought IBS doesn't cause either??

      I'm starting the Fodmap elimination on Tuesday so that might help my symptoms?

      Feel like I'm going mad with everyone doing your fine.. I'm not, I don't feel fine sad

  • crml76466
    crml76466

    Posted

    I've also been diagnosed with bile malabsorption. I've read that the bile might not absorbed due to inflammation in the terminal ileum (which I have) due to crohns. Or could the bile malabsorption be the cause of the inflammation and ulcers? Which came first??

    • IndieHannah
      IndieHannah crml76466

      Posted

      Hmmm, I'd hazard a guess it's the inflammation causing The malabsorption of bile. I have this problem too but it's because I've had all of the terminal ileum removed due to Crohn's structures and fistulas!!

      Do you use Questran to help you absorb??

      Good luck with the FODMAP, I hear it has great results for IBS. 

      Perhaps have a look at the LOFFLEX diet. Can find the diet booklet and the recipe booklet online. It is specific to Crohn's. 

      I'm on it at the moment and it is actually really helping. 

  • UKMattG
    UKMattG crml76466

    Posted

    Hi,

    ?I had a similar nightmare with getting diagnosed. The GI told me if I asked 20 GIs - 10 would say I had Crohn's and 10 not. There's some cut-off point to do with the number of ulcers (or at least that's what he told me). A capsule endoscopy revealed more that were in the areas a scope wouldn't get to and I scraped through with a borderline Crohn's diagnosis. 

    ?It's really crazy but that's the way it is. Keep pushing and ask for a capsule endoscopy. Sounds very much like Crohn's to me - terminal ileum is one of the more common places to see it. Don't be afraid to get a second opinion when the time comes - I've moved to a new consultant and having a much easier time of it.

    Good luck.

  • crml76466
    crml76466

    Posted

    Thank you for your replies. I will persevere with my GI and try and get more answers....
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