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Confused and fed up!

Posted , 5 users are following.

jo19531
jo19531

My white cell scan was clear which is great news, but I still can't be discharged rolleyes I hoped this would be the end of the story and I could go free today sad I'm not getting anywhere! I now have to have a camera and biopsies down the throat to the small bowel. Basically I got told all the other things I have going on cannot occur alone 😣 so does anyone else have - B12 deficiency, lactose intolence, small intestinal bacterial overgrowth and glucose/fructose intolerance ASWELL as being diagnosed with IBD?? I know my fecal protectin level was up a bit at 350+ but can this occur without IBD? I just seem to be getting nowhere!

0 likes, 8 replies

8 Replies

  • IndieHannah
    IndieHannah jo19531

    Posted

    Hi Jo

    Sorry to hear you still don't have a diagnosis yet!!

    Sounds like your about to have the small bowel barium enema ( tube up the nose, down the throat and fed down to the small intestine.... And then barium released into it). It's not so comfortable but it has been the only truly conclusive test I have had, the only thing to confirm Crohn's except open surgery.

    And yes to all the deficiencies and intolerances..... For going on 25 years!!

    Hang on in there and fingers crossed you get the results you need to be able to get on with getting the right help and support and treatment.

    Wishing you the very best

    Hannah

    • jo19531
      jo19531 IndieHannah

      Posted

      Thanks Hannah. I was hoping I didn't have crohns sad I know the consultant is hell bent on proving I have! I wish I could just escape now, these tests are horrid! She said I can be sedated thankfully, I think it is just the camera down the throat tho? Spose I will have to wait and c what the letter says. I've had a good month ooor so, minimal pain and diarrhea which has been lovely smile hoping it continues!
    • IndieHannah
      IndieHannah jo19531

      Posted

      Aww, I hope it's not Crohn's too, but even if it is at least you'll know and you can work with it.

      Half the battle is being able to deal with all the tests and doctors doing stuff that's pretty horrible. But remember, ultimately it's your body and your choices..... Just do what feels right for you and trust that you'll be ok.

      Hope your tummy stays calm and you get a break from all this soon.

      Xxx

    • jo19531
      jo19531 IndieHannah

      Posted

      Thank you. Its hard cos when u feel well, u think why am I bothering, maybe it's just IBS after all. Then when it's bad I'm like OMG this isn't just IBS! Everything is so drawn out, I've had nothing but tests and apppointments since last November and still not really got far! I wish she had never mentioned the word crohns to me, so I could still be oblivious! This will be my final test, if this is clear I shall just live with it. My strict diet seems to help anyway. My daughter is a strict Vegan so I've been trying to adopt her lifestyle food wise and it has helped a fair bit smile x
    • IndieHannah
      IndieHannah jo19531

      Posted

      It's exactly like that...... When your well it's fab and you do think, that's it, I can get on with a normal life. Then it's back and life becomes one appointment after another and lots of waiting and trying different treatments..... It. Sucks!!!

      But it's better to know what your dealing with...... I had so many years undiagnosed it ended pretty badly before it was discovered and I could actually begin to deal with it. It does help just to be able to say "I'm having a Crohn's flare". A lot of people still don't really understand but I do and sometimes that has to be enough.

      Watching your foods and eating really healthy stuff will help.... It's just figuring out what works for you.

      Good to hear you're in a better space

      Xxx

  • stephaney28634
    stephaney28634 jo19531

    Posted

    Hi Jo, sorry to hear you haven't  been discharged yet.  I haven't had these things. Had a camera up my bum years ago. Hope you find out what's going on. Good luck wink
  • SaiA
    SaiA jo19531

    Posted

    Hi Jo,

    Sorry to hear that things are still not conclusive for you. I hope things get sorted for you soon. Following my colonoscopy they said I have crohns and were also testing me for TB. My blood tests came back positive for TB. The consultant explained that inflammation might be due to TB and not crohns or I'm really unlucky and have both. So I'm in the same boat, don't know what to think.

    Saima

  • Dunbegger18
    Dunbegger18 jo19531

    Posted

    Jo I am sorry to hear about your situation, I have Crohn's disease although was treated for IBS and Bechets before being diagnosed. Being diagnosed with Crohns is not the worst outcome you could have. At least then you could get the proper treatment I too have a Vitiman B12 deficiency. Good luck and I hope you get home soon xxx❤💙💚💛💜
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