Crohns experience?

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For the past 6 months Ive been experiencing extreme fatigue and pain in my upper right side. About 3 months ago this worsened, sometimes to the point where I cant get out of bed in the mornings. Ive been to the doctor about it and they dismissed me with a UTI, however I believe there was something going on prior to this. I now no longer have the uti (since a month) but am still experiencing abdominal pain, nauseau, diarrhea (at least 3x a day and there's blood), weightloss (ive lost 8kg in the past 3 weeks) and fatigue. I have been gluten free for the past 2 years and I stick to my diet religiously. We think my grandma may have crohns as she exhibits similar symptoms when she eats beef, gluten or milk among other things. Also my latest blood tests show elevated CRP, EOS and a B12 deficiency. I am scheduled for a colonoscopy.

But if this is crohns I was just wondering how typical this experience is and what other people experienced when they were first diagnosed? Also a lot of what Ive been reading online is very doom and gloom - what can I realistically expect for the future if I am diagnosed? Thank you in advance!

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  • Posted

    Hi, sorry to hear you not been well. Hopefully the colonoscopy will give you some answers.

    I was diagnosed with crohns in 1991 after going into bowel obstruction. I had been diagnosed with ibs years earlier. I did experience pain in right side and diarrhoea but I just put up with it.

    I have just undergone my third surgery for resection. I have however continued to work most of the time full time and had two children since diagnosis.

    My message would be life is what wou mKe of it and don't let an illness hinder you.

    Good luck

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  • Posted

    My symptoms started with pain on the upper right side and diarrhoea and unable to eat/swallow and I lost 2 stone in 10 weeks. I then had pain down my sides and then followed by lower adominal pain with a burning sensation. I had endoscopy that only showed a sliding hernia followed by a barial meal that showed nothing. I then had xray, ultra sound and ct that showed nothing. I had a colonoscopy with biopsy that showed nothing. I then had a mri that showed some shadowing which is when they had me in for a capsule edoscopy which showed three areas of ulcers at the end if my small bowel. I then had another capsule endoscopy 6 months later to assess if the ulcers had got better but they hadn't so was then diagnosed with crohns. The whole lot took 2.5 years to do. If you get lots of tests back as negative just keep on to Dr like I did and hopefully they will find something in the end. Good luck xx

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  • Posted

    I have suffered from crohns for 52 yrs but in those early days not a lot was known and I have to say that I had never heard of it, The one thing you have in your favour if it is diagnosed as crohns is there are more treatments available now that reduces the need for surgery. I hope you soon get to the bottom of this as it the not knowing that is worst and if they do find it positive for crohns then they can start treating it,

    ​Hang on in there.

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  • Posted

    Hi Ruth, I have was diagnosed with crohns 28 years ago and to date have avoided surgery. When first diagnosed did adjust my diet... No milk products or diary which for me did help but this is not the case for all. Been stable but had flare ups every few years and currently experiencing episode. Been prescribed new medication methotrexate which I start today so let all know how it goes. Hope your colonoscopy goes ok.
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