Good and bad news!

[JDTM]

I have another appointment with my GI on Tuesday to discuss the results of my MRI, but here's the quick note I received earlier this morning:

"5cm thickened area of terminal ileum without visible active inflammation."

So... it sounds like the LDN is doing its job in terms of keeping the inflammation away! Unfortunately, not sure how we're gonna deal with the thickened/scarred part of my ileum. Hmmmm...

 

[nogutsnoglory]

The question is was that area scarred before you started LDN or did it become inflamed and got scarred?

Unfortunately scar tissue can only be solved with surgery. How open is it, maybe you can live with it if it's not too enclosed.

 

[JDTM]

I guess I'll find out Tuesday! I'm sure it will need to be dealt with at some point, but I have no idea how urgent it is. Will keep you posted, for sure.

 

[nogutsnoglory]

Good luck. Depending on how thick the scar is you may be able to live with it if you don't risk obstructing.

 

[Jmrogers4]

Glad no active inflammation Jesse.
Sounds like my hubby, most of the time it doesn't bother him as long as he doesn't eat to fast, too much at once, etc.
Really glad the LDN is working otherwise. Hope you get it all figured out soon.

 

[JDTM]

So yeah -- I guess I never followed up on this. Here's the Cliff's Notes version:

My last MRI showed 10cm of narrowing -- right now it's down to 5cm, right at the terminal ileum, with no signs of active inflammation. So that's good, I guess!

The doctor said that if she thought surgery would cure me, she'd suggest surgery -- but as it stands, she thinks that leaving things as is would be the best course of action. The narrowing isn't significant enough to act, and she said that there are some people with extensive scarring that don't experience symptoms at all. So, as long as I'm not in tons of pain all the time, things are going to stay status quo. I'm going to stay on the LDN, as it looks like it's working -- no active inflammation, after all!

All in all, this was heartening news. It sucks to know that occasionally something may get stuck or obstructed in the scar tissue from time to time, and after all, there isn't a bona fide cure out there yet -- but for now, I'm fine with feeling good/normal for the majority of the time. The LDN and Pentasa combo seems to be working for me, so I'm staying on them both for now, and by keeping the inflammation at bay, nothing is getting any worse. Here's hoping that I continue to feel OK!