Doctor Questioning Crohn's Dx?

[Badbelly2012]

Hi, I am 22 years old and was diagnosed with mild Crohn's of the terminal ileum in December based on a biopsy showing focal active ileitis. All my inflammatory numbers have been normal throughout even when I was really sick. I am on a super anti-inflammatory diet (mix of specific carb diet and autoimmune protocol).

My doctor put me on 9mg entocort, and I have been on it for almost 6 months. Three months after starting entocort, my doctor did an MRE which showed terminal ileitis with hyperenhancement and wall thickening. I was put on 6mp and have been on it for almost 2 months, and I am still on the 9mg entocort. I went to see a Crohn's specialist to make sure I'm taking the right medicine and she wants to do another colonoscopy to make sure it is actually Crohn's on the pathology report.

My question is have any of you had any experience with this, and could this possibly be anything else? I went to see an infectious disease doc who ruled out all infectious diseases, so could this be early Crohn's? Also, will any inflammation even show up if I've been on steroids for almost 6 months plus 6mp for almost 2 months? Thank you so much in advance for all your help!

 

[ronroush7]

The original diagnosis could be correct or it could be Ulcerative Colitis. At any time, the medicine could stop being effective for you. I hope it is effective for years to come. Let us know what the doctor says.

 

[Cross-stitch gal]

I know I'm not a doctor, but it could be a misdiagnosis. I was misdiagnosed before I was diagnosed with Ulcerative Proctitis. It's not shown in my signature though. Ron is correct though. Your medication can stop working. The trick is finding what's best for you. I hope you can get some answers. Please keep us updated.

 

[Badbelly2012]

Thank you both. I guess we'll see what the scope says. I'm just nervous nothing will come up because I've been on steroids for so long.

 

[ronroush7]

Welcome.

 

[tots]

I was Dx at 28, a long time ago!, only once has my lab work been abnormal. Thats just how it goes for me. My Disease shows up on CT scan with contrast and with a small bowel series.

My old Dr told me all your test results can be negative and you can still have CD. CD is sometimes a Dx of elimination. You cross off everything else and end up with CD sometimes.

Its frustrating getting a diagnosis and sometime keeping it. If I had not moved I would have stayed with my Dr.

Have you ever had your VitD tested? If its low thats also an indication of CD.


Lauren

 

[Tommy21bn]

CD shares symptoms with a lot of other diseases/infections. In my case i wasn't diagnosed until I had a toxic megacolon and sepsis. 34 operations later I can guarantee that there is nothing wrong with a little defensive medicine. Keep asking all the questions you can think of, it forces the Drs/Surgeons to think and re-evaluate. Good luck.

 

[ronroush7]

CD shares symptoms with a lot of other diseases/infections. In my case i wasn't diagnosed until I had a toxic megacolon and sepsis. 34 operations later I can guarantee that there is nothing wrong with a little defensive medicine. Keep asking all the questions you can think of, it forces the Drs/Surgeons to think and re-evaluate. Good luck.

Agree