u/LollygagCrohnicles

I was diagnosed with severe Crohn’s disease many years ago. And I’ve been on Entyvio for over a year and a half. But in the last several months I’ve been diagnosed with two new issues: active perianal Crohn’s disease and active Crohn’s disease in mouth. MRI & CT show inflammation in both intestines. ER staff say active disease, but GI says scans are insignificant. Labs look normal (shocker). And I have all symptoms I had in the past during active disease that are getting worse over time.

I’ve been trying to get GI to switch my medication for months, but GI refuses to do so or diagnose whether my disease is active or not without a colonoscopy. My GI will say in the same conversation that I’m likely in remission, but symptoms and perianal activity suggest active disease. So I’m confused and concerned.

Does this sound right to you? Do you really have to get a colonoscopy to switch meds or in this case declare active disease or remission?

So I’ve been on the same biologic far past the timeframe where it should be working. I have a history of severe Crohn’s disease. Before and after starting the medication, I never experienced being symptom-free. Still deal with pain, diarrhea, joint pain, etc. which my GI suggests may be IBS. However, after my last several infusions I’ve had so many new developments in my disease and a few other issues:

Before starting medication, I never had perianal disease activity. But so far I’ve had abscesses and fistulas develop in the last few months. And recently my mouth had severe inflammation and sores all over which I also never had before this medication. Went to the ER and after running a bunch of tests they believe it is active Crohn’s disease in my mouth. My MRI’s and CT’s show inflammation and fluid in both intestines too. The ER said this is caused by active disease, but my GI says it’s insignificant.

My GI also states that I shouldn’t have perianal activity unless my disease is active. We have not discussed the active disease in my mouth yet. All that said, GI wouldn’t decide without a colonoscopy 1) whether I’m in remission or not and 2) decide if this medication is working or if I need to try something else. I understand that to an extent since colonoscopy’s are the best way to check for inflammation in the intestines and get biopsies. But taking everything else into consideration, I feel like there’s enough here to make a decision.

To me, new Crohn’s disease activity and developments that are “spreading” for a lack of a better term suggests my disease is not under control and is not in remission. I understand there’s different types of remission. But, remission to me means no active disease/inflammation anywhere and better yet no other symptoms. Right?

As someone with Crohn’s disease, would you think that I can be in remission with all this new activity? Or would you think that the medication is not working?

TL/DR: been on biologic for a while for severe Crohn’s disease. Now have Perianal Crohn’s Disease and was diagnosed with active Crohn’s disease in mouth - never had either before this medication. CT & MRI show inflammation in both intestines (ER says active disease, GI says insignificant). Can I be in remission with all this or is my disease still active and the medication isn’t working?