My Story

Since 2002 my doctors have told me that I have IBS. In 2008 I got pretty sick, dropped a good amount of weight, had lose stools every time I used the bathroom, joint pain, and rectal bleeding. After a week in the hospital and many testing including CT scans, colonoscopy, endoscopy, Upper GI barium testing I was diagnosed with Crohns located only in my ilieum. I was 20 at the time and thought it was nothing. Didn't follow the medication requirements and did as I pleased. In 2010 I had a series of flare ups which resulted me back at the drs. I had another colonoscopy and endoscopy. The finding were the same and I was given the same diagnosis of crohns. I took the meds until I felt better then ignored it. I certainly had flare ups, weight loss, bleeding and pain throughout the years. Recently I dropped 16lbs in two weeks and had associated signs and symptoms of a flare up. I went to a dr. with images of my last scopes. He place me on meds and requested for a colonoscopy. I now sit confused as the results of my scope do not indicate crohns. How can this be? Is crohns hard to diagnose? Have other people experienced the same? I'm at a lost. My daily life is and has been affected by my signs and symptoms. I don't want to ignore them any longer. I plan outing and events based upon my symptoms. I just want to gain control of my life.

Crohns can be tricky to diagnose and sometimes it takes multiple tests and doctors before one gets a correct diagnosis. It's possible your new scope didn't show any active ulceration. If your doctor is reversing your diagnosis what is their rationale and what are they suggesting you have? I wouldn't hesitate to get another opinion.

During the first two colonoscopies did they take biopsies? I only ask because if the biopsies came back indicating crohn's then that is pretty solid. It's not foolproof there are some with CD that don't have it show up in biopsies. Did they do biopsies this last colonoscopy? What in the results indicated it wasn't CD? Have you discussed this with the new GI? That would be where I would start, list all your questions then go over them with you GI until you are satisfied with his explanations. A second opinion might be a good idea too.

I hope you find some relief soon.

Thank you both for your responses. I truely appreciate them. I just had the colonoscopy today which showed no signs of crohns. He did take biopsies and the results should be back within a few weeks. I am a new patient with him and he is now asking to have a CT scan done and an upper Video Endo. My pervious dr. did take biopsies and they came back for Crohns. At this point I just feel confused, frustrated, and "sick to my stomach".

you mentioned that when you were diagnosed with crohn's previously, it was only in the ileum, so maybe the doctor is asking for the additional tests to check for inflammation in the small intestine?

Why is a ct scan necessary when you just had a colonoscopy? Are you complaining about upper GI symptoms? I don't understand why you need an endoscopy. This doctor raises a red flag for me since he de-diagnosed you and is ordering all these tests.

The dr is asking for a CTscan to make sure it is safe to proceed with the Video Endo. I have no upper GI issues. Most of my pain and discomfort comes from my lower right side of my stomach. Checking for inflammation in the small intestine maybe a possibility. Ill have to check with him. I wish I was able to speak with him more after the procedure. Have other people had such a journey in their diagnosis and road to treatment?

Earlier this year, my son had colonoscopy and MRE(similar to MRI or CT in that it is imaging). He is already diagnosed but his CD is located in his terminal ileum and it is hard for them to get past the IC valve. So they also did a MRE to determine if he had any damage further up. At that time he wasn't experiencing pain or GI related symptoms but was dealing with severe joint pain and the GI felt he had some active disease. At the time of dx, he had an MRI, upper endoscopy and colonoscopy.

So your GI is probably being thorough but I would still pose questions about re-diagnosis to him or through his GI nurse. You can also get copies of all the testing results which might help you to wade through the differing opinions on dx.