Confused with diagnosis

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Hi all,

I've received a letter referring me to see the gastroenterogist consultant. There was so much confusion as who I was meant to see it being the ibd clinic or gastroenterologist as I might sound stupid but thought they were the same. Firstly my referral letter States I had symptoms in DEC and going to the toilet up to 20 times a day for 3 day's which is incorrect. I had it for 7 days. Don't know if that makes a difference. I don't understand why I'm not being referred to an ibd clinic as it states I have acute terminal ileitis2 and The differential diagnosis includes infection and crohns disease. This was discussed with ibd nurse specialist and surgeon and they adviced I be sent to gastroenteroentologist. Firstly if I have an infection shouldn't I be treated asap and as I have crohns the ibd clinic? They mite be giving me another colonoscopy but don't know why.

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13 Replies

  • Posted

    Bye the way I was reading that terminal ileitis2 is very rare affecting 1 I'm one million people. Has anyone heard of this and should I be worried?

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    • Posted

      I dont know what you mean by terminal ilietis 2?

      Terminal iietis is common in infections and crohns.

      Im not sure what you mean by 1 in a million.

      From what youve said, you may have an infection or something else.

      The g.i would be overseeing your care in an ibd clinic or as a referal to a g.i.

      Acute means sudden onset, either way a gi is an appropriate person to see

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    • Posted

      Hi Alfie,

      There considering I have infection but I hope not. Isn't it dangerous to leave an infection untreated and even though I'm seeing consultant tomorrow I think they want to give me more tests before I get treated. I had stool test and infection was ruled out so don't know wat their talking about I read about these infections and I hate to say this but I hope they say its ibd. I was also Reading about small bowel cancer so I know wat. To ask consultant tomorrow. It's rare but still a possibility. They all mimic crohns

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    • Posted

      Try and not let your imagination run away with you.

      Small bowel cancer i am.sure would give you many more symptoms, similar to a stricture.

      Theyd have tested a few infections but not all of them.its like a panel.

      Youre not symptomatic just now, no fevers etc, so i dont think its dangerous.

      Hopefully tomorrow you will know more.

      I.wouldnt wish ibd on anyone. Small bowel cancer is rare, in general.its rare.

      Google can be dangerous and doesnt always help.

      Good luck tomorrow.

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    • Posted

      Thanks for advice. I shouldn't google it as its made me more paranoid. I'll wait and see war consultant says. Thanks

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    • Posted

      Hey, the consultant said they discussed my case In their meeting and all agreed that its more likely I had an infection as I don't fit the criteria of crohns. He said I only had symptoms lasting a week and crohns symptoms wouldn't just disappear and would of lasted longer. Although my calproctecin was greater than 6000 which he said is the highest it goes "which didn't make me feel good" and that the test is non specific. He said going by the biopsy there's not a sniff of evidence of crohns and that time will tell. I still mite have crohns he's not ruling it out so he's sending me for an MRI and another colonoscopy. Should have MRI in 3 weeks. He told me I shouldn't label myself as having crohns as it could affect health insurance etc.. Don't really know why he said that. I do get stomach cramps and the odd pain and feels tender wen I press down my stomach, he said its prob my IBS but I've not had these problems like this before so I'm not so sure. Either way he said I have mild inflammation which is odd since my calproctecin was so high but I just need to wait. Fingers crossed he's rite but I know there's many stories of people being diagnosed with crohns yea later after being told The same thing.

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    • Posted

      He also said I would be still having symptoms if it was crohns. Tbh I don't think they really know as prior to my consultant appt I was told its highly likely I have crohns. He was surprised I wasn't in hospital with a calproctecin of greater than 6000 and I had that test wen me symptoms were clearing up! Lol

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    • Posted

      Thats good news that the tests didnt show anything, and good they are double checking.

      Inknow the fcp is not specific and an infection could raise results.

      You seem a.lot calmer.

      X

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    • Posted

      Yeah I do but I'm still not entirely convinced it was infection. Ive done another stool test and if its still high then it's probably crohns. I don't know why the consultant didn't suggest this. I also have BV which isn't a big deal but mite need to take antibiotics which I told the Dr it mite of given me this as I got sick 1 week after taking it but he said its unlikely from the antibiotic. Were u diagnosed quite quickly? He said its very difficult to diagnose

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    • Posted

      No not diagnosed quickly. But testing has moved on a lot now. Fcp, mri etc werent available.

      Antibiotics can mess up your guts, the test could have been contaminated.

      Please try not to worry.

      Xxxx

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    • Posted

      I have no choice but to take the antibiotics that could of potentially given me colitis. Spoke to Dr and she said its up to me but at least I would know if it's the antibiotics. I need to clear up the BV otherwise it can spread. Its strange you take 1 thing and get something else lol Thanka for all your advice x

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