Crohns & incomplete evacuation

Hi all I’m after a bit of advice please. After an all clear colonoscopy and biopsies but no calprotectin test or an MRI I’ve been told I definitely don’t have Crohns. I’ve been told this is because my symptoms don’t indicate that and it’s pointless to have an MRI of the small bowel. Does anyone on here suffer with incomplete evacuation and been diagnosed with Crohns after an MRI alone? I see the consultant on Tuesday and I would like some evidence if it exists that I could indeed have Crohns and insist on an MRI. And help or advice gratefully received! Thanks 🙂

[FRreedman]

I don't understand why anyone would want to be diagnosed with Crohn's disease. If you are unhappy with the way your consultant has organised or interpreted your test results, you are always allowed to ask for a second opinion, but why do you appear to want to be diagnosed with one of the most debilitating, incurable diseases of our time?

[Hidden in reply to FRreedman]

I have no desire to be diagnosed with Crohns and I could probably have written my post better to that effect. I’ve read that lots of suffers have years of misdiagnosis before they are properly diagnosed and often end up having surgery. I was hoping to learn from others and avoid that if anyone could relate to my situation. I will get a second opinion if needbe but just wanted to be armed with facts before I see the consultant.

[FRreedman in reply to Hidden]

Well, the best advice I can give you is that Crohn's disease does not affect two people the same way. Yes, we all have problems with our bowels and we all have pain, but it is in different orders and different strengths and at different times and this is why it is so difficult to treat. The only real advice I can give you, is that which was given to me, and is now accepted by many consultants:- You know your own body, if you don't think something is right then get it checked, and then get it checked again, and, if it is still not right then try a different tact. (Mal absorption, rather than IBD/IBS). I wish you luck in your quest, and sincerely pray you do not have Crohn's disease or Ulcerative Colitis.

[Hidden in reply to FRreedman]

Thank you for the advice I really appreciate it. I will continue until I get some answers (25 years and counting!) and I sincerely wish you all the best having to live with such an awful condition.

[maceyukk]

I was diagnosed with Crohn’s in my small bowel via MRI (my colonoscopy was clear) I understand your frustration I was told I probably had IBS because I wasn’t having what they call “normal” symptoms I would be physically sick as well as Diarrhea and he told me that was odd and doesn’t sound like IBD. It wasn’t until my calprotectin/bloods inflammation came back high that he then believed I did have it. The MRI showed imflammation in my small bowel. So I would seek another opinion and ask first of all for calprotectin test!

[Hidden in reply to maceyukk]

Thanks for sharing your experience. It seems that the calprotectin test is key and I will certainly pursue getting it!

[JoanneUk]

calprotectin and blood tests was the first thing my doctor ordered. I was pretty lucky as the first time my calprotectin was 52 so had to do the test again and it was 49 just one under meaning no colonoscopy needed. So yes make sure you get one. I’m now trying lifestyle changes to see it I can sort out what is wrong.

[Hidden in reply to JoanneUk]

Thanks Joanne do you know what brand it was I’ve just seen that they are available to buy on amazon! Good luck with getting on top of your problems

[Daisy50 in reply to JoanneUk]

I have crohns my calprotectin test was over 400 nearly 500, and all my other test came back as crohns I had been miss diagnosed for many years. My daughter has the same symptoms as me her calprotectin test was 176 a grey area they wanted it tested again and the specialist wouldn't do it.

[Hobbits]

I was diagnosed via colonoscopy and a biopsy. I then had MRI to see past a stricture. The MRI found skip lesions not seen in the colonoscopy. I only was given Calprotctin tests after I started Remicade. My doctor uses calprotectin tests and also monitoring bloods for inflammation markers and monitoring the Remicade levels in my blood.

[Hidden in reply to Hobbits]

Thanks for replying I’ve done the calprotectin test now so just waiting for the result.