Crohn's Disease Or Not?

macca@90macca@90 Posts: 1,769
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Good Evening

4 years ago I was diagnosed with Crohns's after persistent stomach cramps and diarrhoea. I have been treated for this ever since.

Lately I have felt that this was not the case and stopped taking the medication as I have felt well for a while.

My new consultant agrees the original diagnosis was made on flimsy evidence and has arranged for another colonoscopy. While there were ulcers present at the time the diagnosis was left open depending on my clinical symptoms.

What do you think it could be if not Crohn's which seems even more unlikely as nobody in my family has it :confused:

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  • [Deleted User][Deleted User] Posts: 2,140
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    macca@90 wrote: »
    Good Evening

    4 years ago I was diagnosed with Crohns's after persistent stomach cramps and diarrhoea. I have been treated for this ever since.

    Lately I have felt that this was not the case and stopped taking the medication as I have felt well for a while.

    My new consultant agrees the original diagnosis was made on flimsy evidence and has arranged for another colonoscopy. While there were ulcers present at the time the diagnosis was left open depending on my clinical symptoms.

    What do you think it could be if not Crohn's which seems even more unlikely as nobody in my family has it :confused:

    Could be a whole range of things and personally I wouldn't like to speculate what it could be. But I have a friend who has Chrons and well I have seen how she can be with it so know how you feel.

    If it isn't Chrons it could be IBS but I seriously advise you to keep nagging your consultant for every possible test to get it sorted out.

    I hope you do get it sorted out soon.
  • ValLambertValLambert Posts: 11,688
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    I get flare ups of Ulcerative Colitis. It's similar to Crohns in some ways but doesn't have the other symptoms such as arthirits or inflammed eyes.. There has been times when the colon has been too inflammed to do colonoscopy but thanks to short dosage steroids and diet it is mainly controlled. Keep pressing for tests, unfortunately it could be a while.
  • [Deleted User][Deleted User] Posts: 511
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    Crohns is a chronic disease, so your symptoms will come and go and at times be much worse than others, i.e. if you are flaring. If your colonoscopy has shown ulceration or healed ulceration, then Crohns is a definite contender for diagnosis. Are you feeling more unwell recently but think it is possibly the medication? I am the only one in my family that has it and it took a few years to accept the fact that I did have Crohns, the consultant werent very forthcoming with what to expect from the disease. It was only when I started to learn about the disease and talk with othere sufferers, that I realised that certain symptoms were similar. Crohnszone is a fantastic support site, you can find out pretty much anything you need to know on there. Misdiagnosis does happen sometimes and crohns is not a textbook disease, each person will travel a different road with disease, there isnt really a standard to compare yourself and symptoms with. Feel free to PM me if you have any questions, I know the consultants arent very helpful.
  • [Deleted User][Deleted User] Posts: 171
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    My dad spent a lot of miserable years believing he had Crohns. After a visit to a nutritionist he was advised to take a range of live bacteria and adapt his diet to stop feeding the bad bacteria in his gut. The nutritionist said he had systemic Candida and not Crohns. She controlled his 'movements' in the first instance with large doses of vitamin C and Iron.
    Within a month or two he was well and he never ever had a problem again for the rest of his life ~ a good ten years.
    I can't see how it can do any harm to take the bacteria (btw it is was not off the supermarket shelf stuff) but maybe think about investing in a visit to a nutritionist. ;)
  • [Deleted User][Deleted User] Posts: 511
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    Olive Oyl wrote: »
    My dad spent a lot of miserable years believing he had Crohns. After a visit to a nutritionist he was advised to take a range of live bacteria and adapt his diet to stop feeding the bad bacteria in his gut. The nutritionist said he had systemic Candida and not Crohns. She controlled his 'movements' in the first instance with large doses of vitamin C and Iron.
    Within a month or two he was well and he never ever had a problem again for the rest of his life ~ a good ten years.
    I can't see how it can do any harm to take the bacteria (btw it is was not off the supermarket shelf stuff) but maybe think about investing in a visit to a nutritionist. ;)

    Crohns sufferers more often than not find acidophillus beneficial as it helps balance the "flora and fauna" of the gut, supermarket drinks dont have anywhere near enough cultures to be of any benefit if your body is under stress with bowel disease. Another good complimentary therapy is EPA fish oils (high in omega). They are nowhere near a cure but can compliment your prescribed drugs to help ease symptoms.
  • acousticno3acousticno3 Posts: 234
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    ValLambert wrote: »
    I get flare ups of Ulcerative Colitis. It's similar to Crohns in some ways but doesn't have the other symptoms such as arthirits or inflammed eyes.. There has been times when the colon has been too inflammed to do colonoscopy but thanks to short dosage steroids and diet it is mainly controlled. Keep pressing for tests, unfortunately it could be a while.


    I have ulcerative colitis and it definitely does have some of the associated symptoms such as arthritis and uveitis. Its variable for different people but these other symptoms can be present in both crohns and colitis - there is a large amount of symptom crossover between the two.

    Neither conditions are usually diagnosed without biopsies being taken during colonoscopy and being sent off for histology.

    This is a useful organization http://www.nacc.org.uk/content/home.asp

    Push your current doc for a definitive diagnosis as the treatment for Crohns/UC is different (although there is some crossover in some cases).

    Good luck
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