Getting a diagnosis

Hello

My daughter had this for almost a year and the doctors didn't know what it was until she had a colospany and found out she had Crohn's disease so I'm thinking it could be the same as although she is on steroids she still has the pain everyday and she isn't at work either good luck

Hello 

I was dignosed in 2014. I had a colonoscopy and MRI Scans to get my diagnosis.

They showed I had ulcers on my intestines and a blood test showed I had high inflammation within in my body. 

Sorry to hear of your on going problems ,,even before the scans my doctor did a calprotectin stool test on my son .This gives a good marker of what's going on in your stomach ,and highlighted my son had crohns and when he's goes in relapse is the first test done to see if it's flared up again.Hope this helps and good luck ,

Hi Keeleyann, I found out I had crohnsin hospital. Then, I ended up having emerancey operation a ilestomy stoma.

I have had Crohns Disease for many years and luckily my specialist was approachable and I could ask him anything. I think it is important to make a list of the things you want to know and ask your questions when you see your Specialist, you need to make sure thatyou can get on with them and if you find it difficult to do this in person be brave and write to them, via their secretary. Crohns is a very nasty complaint and you need to be confident when dealing with your own complaint.  Good luck and best wishes. Sheila

So has anyone had an MRI that didn't show Crohns but other tests did?

Hi keeled ann, sorry to hear all the difficulties you're having.

I was having twisting pain and vomiting and running out of things I could eat! Eventually I saw a gastro consultant had bloods taken which showed high levels of inflammation. Then had a colonoscopy which showed ulcers and blockages. I then had an MRI which showed there were 2 strictures and a blockage leading to the stricture. So the MRI gave more detail of the problem. I've found things eased when I began a low residue diet in June and still on it. Hope you get on ok and feel better soon 😊

Hi keeley im basicly in the same position as you ive had 2 colonoscopies 1 sygmoidoscopy a ct scan and mri 1st test showed ulcers in my colon was told had uc now after mri was told crohons as shows narrowing in end of colon and a twisted piece so redone coloniscopy now told may not be crohons at a loss to know what to do next i just know i cant function like this itx been over a year i used to have so much energy now i have none and struggle with normal daily things wish you well and hope you get answers soon x

Hi Keeleyann.  I was diagnosed through explorative surgery.  I had a history of years of abdominal pain ranging from irritating to agonizing, bloating, diarrhoea, vomiting, and weight loss.  I had all sorts of investigations over the years which showed nothing.  Colonoscopies were clear.   Eventually I made so much noise that they decided to surgically investigate - I think they thought I had adhesisons from previous ovarian surgery.  It turns out I had Crohn's.  12 inches of bowel was removed from the terminal ileum.  Apparently colonoscopies often miss Crohn's as the terminal ileum is just out of reach going upwards, and just outof reach going downwards, so it is often missed.  That was 13 years ago.  I have just come off my Azathioprine medications as I am now in remission, as I now have a higher risk of lymphoma because of the immunosupressant medication.

Hi Keeleyann,

I'm currently undergoing tests to determine if I have Crohns. Both my mum and her sister have it and the symptoms I've been experiencing seem to be the same as they had.

I was finally referred to a gastroenterologist by my GP as I had a high calprotectin level. I am so grateful that the Calprotectin test is now available as my bloods had all come back normal ( apart from indicating anaemia). Prior to the calprotectin result being received my GP was adamant that it couldn't be Crohns or something would have shown in my blood results. If you haven't already, do ask for the calprotectin test as this will show whether there is inflammation in your intestines.

I have now see a consultant who, based on my calprotectin result, anaemia, family history and symptoms has said that he's almost certain it is Crohns but that obviously we need to find it. I've so far had a colonoscopy and an MRI. The colonoscopy showed no abnormalities. The MRI indicated a very cystic liver but nothing in particular with my intestines. It may be of interest to you that my consultant had said prior to the MRI that is doesn't usually show very much - I think from the way he spoke that he meant for mild cases as I'm sure that a blockage / stricture would show.

I am now scheduled to have a pill cam investigation in 3 days and just hope that they find something. If, as he suspects, it is Crohns then despite being in pain every day ( abdominal, back, joints), feeling sick, losing weight and running to the loo multiple times a day, I do think that I would be considered a mild case ( my calprotectin was 196/197). I wonder if this is why the MRI didn't show anything?

Just to add. My mum and aunt were diagnosed 20 and 15 years ago ( my mum at my age). Both had normal bloods, colonoscopy and gastroscopy results. I know that my mum also had a scan that came back clear ( think it was CT but not certain). They had symptoms for years and were continuously sent away from the GP ( different GPs) being told it was IBS - my mum was even told that it was in her mind and was prescribed antidepressants.

With both of them it got to the point where they were admitted to hospital for emergency surgery to remove part of their small intestines. ( my aunts op was 5 years after my mums). The only reason I'm explaining this is because it shows just how difficult it is to diagnose Crohns. Things have improved ( Yey, for calprotectin tests!) but it's scary to think that my GP expects blood results to be abnormal if you have Crohns as I know that this wasn't the case with my family members.

I hope that you manage to find out what is going on and that you can get treatment to help you feel better soon xxxx