Stable stricture pain?

[Eilujala]

Thank you so much in advance for reading this and sharing any thoughts.
Crohn’s dx 2014, humira now qweekly. About 5 weeks ago, I started having bad cramps all over my belly, sucks but isn’t terribly unusual, switched to liquids which helped the big rolling cramps, but not the burning, pulsing sharp pain in lower right quadrant. I’ve know of narrowing there all along, scope in July could not be completed.
Did labs which were completely normal.
Just did another scope 2 weeks ago, +dilation (stretched to a whopping 11mm), thought I would feel better but havent improved. Doc saw some small superficial ulcerations, exam was not completed because of narrowing. then started budesonide, still no improvement (except increase appetite). I’ve been mostly liquids, with few low residue solids. Just did another set of normal labs, still having the burning lrq and a full ache in upper rq. Still super tired.
I féel like an idiot for doing this whole work up. My doc ordered an mri but I feel like there’s no point - they keep telling me there’s no reason for me to have pain.
I would love to know if others have had anything similar with pain and normal labs and if you have any advice.
thank you dear crohnies!

 

[my little penguin]

Have an MRE (mri with entography)
That is the best for imaging strictures especially in the small intestine
Scopes barely reach the small intestine at all only the Terminal illeum
So an MRE is best to understand the small intestine and then a capsule endoscopy (pill camera) if MRE is clear

 

[satterae]

@Eilujala I hope you are doing well. Did you ever get any answers and find some relief? Your case sounds very similar to mine. I also have a stricture and budesonide did nothing. I finally became so frustrated with my GI that I transferred to a university hospital doctor who is a Crohn's specialist. I am waiting for a scheduled MRE in two weeks. The waiting is extremely difficult. I'd love to hear how you are doing.

 

[Eilujala]

Hey, sorry you’re having similar stuff.
So my MRE showed large stool burden - I never considered that I could be constipated because I was going everyday….I started miralax, then added Metamucil and started to feel better overall. My MRE also showed active inflammation around my stricture…for reasons that still confuse me, this was not that interesting to my doctor.
For me, I think the budesonide did work, but also had the constipation, and once that was taken care of, it felt like the budesonide made a difference.
I’m due for a calprotectin test. Man do I wish that didn’t involve stool collection.
I’m seen at a university hospital, often seen by a fellow working with my doc, and then my doc. Sometimes seems like the hypotheses and plans depend on which fellow is involved (one is more interested in calprotectin, one is more interested in constipation, one is more interested in surgery, etc). Have you had an MRE before? My experience is it takes a long time, don’t plan to work afterwards, I reliably throw up and have diarrhea. But definitely worth it.
best of luck to you.

 

[satterae]

@Eilujala Thanks for the quick response! It has been awhile since my last MRE. They have been waiting for an endoscopic clip to pass, which has been frustrating. I had a colonoscopy two weeks ago, the first since transferring GIs. The university doctor was able to reach my terminal ileum which my other doctor had not been able to do. The new doctor said biopsies showed minimal inflammation and a healed fistula from TI valve to ascending colon, so my Remicade is working, but noted the stricture. I have recently had two CTs with enterography (because of the clip), which also showed mild stable thickening of the terminal ileum. I did get my appendix out after the first CT scan due to an appendecolith, which helped tremendously with the tenderness, but this dull ache just persists. It's incredibly frustrating and waiting for answers for over a year is very draining, as I am sure you well know. Thanks for listening. I wonder if a CT with enterography would pick up on constipation or if the MRE is more sophisticated.