Chrohns disease possible diagnosis

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Hi

I have currently been in hospital for 2 weeks with severe abdominal cramping. They are testing me for Chrohns Duisease. I'm just wondering how quickly it can develop. In December I had a clear colonoscopy but it January it's showing chronic terminal ileitis in my terminal in my ilium. However they still won't confirm diagnosis until I have an MRI of my small bowel. Is is possible for it to develop so quickly since December?

I'm in such agony and can't really eat so would really appreciate any help!

Thanks again

Shea

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9 Replies

  • Posted

    Well it can develope quikly, but that is a little faster than what I experienced. It may be some other type of issue. Mine took about three to four months to get bad enough to put me in the hospital. It started with some traces of blood and then several fast stools per day. Then the bleeding just kept getting worse. I had a lot of pain with it. It's odd that most doctors don't think it causes pain, because the colon has no nerves in it, but I beg to differ. I wish I could hook my doctor up to my pain receptors for a day so they can feel what I feel. I tell you they would not ever question it again. I bet they would be really happy to disconnect from it. It usually takes a few biopsies of the colon to determine what type of IBD it is, however I have been told I have ulcerative colitis, but I was later told that it starts in the rectum and progresses up the colon from there. Mine started in the desending colon and later disease was found throughout my colon. That suggests Crohn's disease, but they are now saying I have both. Crohn's Colitis, whatever that is? I have had this disease since about age 17 and I am now 47. I still don't have a proper diagnosis, so don't count on it. Sorry.

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    • Posted

      Thanks so much. Yes I thought it was a bit quick . I was hospitalised last July for 2 weeks with infectious colitis and haven't really recovered . The colonoscopy in December showed inflammation and scarring and I was suffering from this cramping but just before Christmas it got worse and I've now been in hospital the last three weeks. The doctors keep changing their minds and are divided over whether it is in fact Chrohns. It's so painful and some of the intern doctors are quite judgemental and because the colonoscopy was inconclusive it makes them even more so. Some are saying the latest biopsy might be because of inflammation from the December colonoscopy and not Chrohns ! So confusing!!

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  • Posted

    Hi Shea,

    I'm sorry to hear that you are not well. x

    You mentioned your terminal ileum being affected. I have Crohns in my small intestine ( proximal, mid and distal parts). The part that is most severely affected is my terminal ileum - here I have extensive ulceration, cobblestone mucosa ( indicating that I've had it for a long time) and some stricturing. I'm not sure if it helps but my colonoscopy was completely clear. My large intestine is unaffected. Sometimes with a colonoscopy they are able to view the area around the very end of the small intestine ( where the ileum joins the large intestine) but this is not always possible and wasn't with mine. I also had an MRI scan which showed nothing abnormal ( despite my symptoms being very severe - I was in a lot of pain and had such a long list of symptoms which I won't go into here - I was in tears most days with the pain and found it very difficult to cope). My consultant had warned me that the MRI may not show very much as it does not give detail of the appearance of the lining of the intestine.

    As I had previously had a high calprotectin result ( from stool sample) which had shown that I had inflammation in my intestine, I was then offered a 'pill cam' ( capsule endoscopy). This is the only one of the 3 tests that I had that was able to look in detail at the lining of my small intestine. The results showed that I had extensive ulceration throughout the whole of my small intestine and, as mentioned above, cobblestone mucosa and mild stricturing. I was advised to take Budesonide (endocort) and Mercaptopurine (6MP).

    I hope that this might help a little. I was shocked at the time that my disease was so extensive despite my colonoscopy and MRI being clear. I hope that you can get a diagnosis from your MRI but if not please do push for further tests and ask for the pill cam.

    Just as an additional note, I was diagnosed 8 months ago and am very well now ( very rare that I get any pain now and all of my other symptoms; sore joints, stinging eyes, extreme tiredness etc have gone). I chose to opt for SCD rather than 6MP. I am not trying to advise what you should do if you are diagnosed with Crohns, just want to show that things can improve very quickly once you have a diagnosis and start treatment xxxx

    Good luck with everything xxx

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    • Posted

      Thanks so much Sarah.

      I actually had a pill cam in November but it was clear so I'm feeling very anxious that we will never get to the diagnosis. I would love to get home as it will be three weeks on Thursday that I have been in hospital. The cramping is unbearable and they are just doing what they can to control the pain. Im wondering if I should ask for a repeat pill cam. Thanks again for your help.

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    • Posted

      Oh goodness, I know how awful it is waiting to find out what is going on. For me it became more and more difficult to cope with the pain the longer it went on.

      If your MRI comes back clear I'd definitely ask for further tests even if it's a calprotectin stool test initially to check for inflammation. Unfortunately, my experience has been that I had to insist and fight for further investigations - I knew something was wrong even though my tests were all coming back clear. Even my bloods didn't show evidence of inflammation ( but then my mum and aunt also have Crohns and theirs didn't either).

      I hope that you are getting pain relief in hospital that is helping. x

      It may be worth looking at SCD as its something that wouldn't do you any harm but may possibly help. Seattle hospital has recently completed a study on it and published a research paper. I believe Washington university are also looking at it. Although I'm in the UK my understanding is that SCD is recognised more in the US and is recommended by some consultants. x

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    • Posted

      Thanks Sarah .

      It certainly is frustrating.. the colonoscopy biopsy basically shows it's either chrohns or inflammation from a previous colonoscopy but so much pain so hospital is the best place for me.

      The pathogist said he thinks it's chrohns but the doctors and interns keep changing their minds! Fingers crossed for answers soon! Surely if it was inflammation from a previous colonoscopy it wouldn't cause this much pain .. so confused.

      I'm in Australia but that study sounds interesting- thanks for your help it's really appreciated .

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  • Posted

    Hi, you are the first person I have heard that has got crohns so quickly. I was ill for years til i was in hospiital back 2008, i got tests done and found out I had crohn's.

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  • Posted

    So sorry to hear you are not well, yes it does sound pretty fast but I suppose it has to start somewhere! to cut along story short I got diagnosed 9 years ago but only because I was gravely Ill, my doctor kept putting it off saying it's ibs despite losing lots of blood and severe pain, I ended up with a ruptured bowel a massive abscess and a illiostomy bag! All was well after they removed 12" at the end of of the small intestine and I had a reversal 7 months later, well it was like I'd never had crohns for the next 8 years until last October when I started with bad pains, I went to hospital who said my bloods showed an infection but it could be from a virus so got fobbed off again! Had 2 flares since and have been so ill over the weekend with pain like labour that it's made me sick! I went to docs yesterday and she said I could go to a&e or go home and see if it improves! Any how I had bloods today the cramps are easing but feel so hot and sweaty and rubbish! I know it's the crohns, another thing is what meds are good?

    All the best to you

    Clare

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  • Posted

    Hi,

    I can only tell you my experience and i hope it helps smile

    I have been diagnosed 3 years ago and was prescribed asacol.

    I had blood mucus and dirrhea +severe acne.

    I started making smooties-banana strawberry carrot spinach ginger smooties and stopped all dairy products!

    Currently im meds free for 1.5 years ( but i would take meds if i would get a flare) and juicing 0.5-1 kg ecological carrots +cabbage+ginger root+tumeric every day

    There has been scientific studies about cabbage healing all ulcers in belly in just a couple of days! GOOGLE IT smile

    +CARROTS ARE AMAZING!

    But its a trial and error process as everybody react differently. I also try to eat non-inflammatory diet(gluten free, no rice, no pasta no bread no milk products and barely no animal products, No sugar.) Veggies, beans, chicken sometimes etc. I made this change in my life due to severe acne +colitis but of course sometimes i cheat( like once a week or month, but only a little)

    Ele

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