Never-ending disappointment: "normal" MRI

[ccerulean]

I had an MRI on Monday to see what was going in with my disease after 8 months on azathioprine. The dr sent me an email on Thursday saying the MRI came back normal...! I called immediately, and he called back later in the day to say the report found no significant pathology in the abdomen, and that he would review the images and confirm with me. As you can imagine, I was beyond thrilled. I imagined my beautiful, squeaky clean, unulcerated pink colon. I basically started planning a party in my head, as I've been in a flare since Jan. 2014.

So then yesterday I get another email from my dr, which reads: "I went over the MRI with the radiologist. The MRI findings of the small intestines were suggetive of mild inflammatory changes of Crohn's associated with scarring in the bowels."

Well that doesn't sound NORMAL.

I'm crushed. We all know the deal with scar tissue. That means how I feel today is as good as it gets?

Hope this doesn't come across as too self-serving, I'm just looking for support.

 

[24601]

Of course, you would want support! No one wants to hear they have scarring (or any inflammation either) in their small bowel

Sorry to hear that. But even if the findings are just as the report suggests and you do have scarring I don't think that means that you will always feel just as you do now.

I've had strictures that my surgeon wanted to operate on and that were causing me pretty bad obstructive symptoms...and then the symptoms improved significantly for no reason that anyone could understand, even though the strictures remained.

Bowels are complicated and there are likely lots of factors affecting how your gut is feeling and functioning right now. While it would be nice if guts were easy to understand and fewer factors that control how they behave, the good thing is that I think there is hope that you can feel better even if you have scar tissue and don't have surgery. Although surgery is an option too and can be a good one, for many people, depending on severity of symptoms.

Did you have an MRI before starting Aza? Because I'd be interested to know if there were signs of disease in your small bowel 8 months ago. If this inflammation (and consequent scarring) has happened while you were on Aza then I think that's suggestive of you needing a med (or dosage) change.

 

[ccerulean]

I've had multiple CTs and small bowel follow through X-rays, the most recent being Feb. 25. The CT at that time showed "moderate inflammation and thickening of the bowel wall." So it seems it's helped some, and I certainly feel better than in February, but has it done enough? How long for it to fully work? I feel like 8 months is a long time. Incidentally, my dosage was reduced from 100 to 75 mg in also February because it was becoming toxic in my bloodstream.

Thanks for your kind words. It's nice to hear someone that "gets it." Crohn's is a lonely disease.