Crohn's Disease Forum » General IBD Discussion » New to crohns- need help understanding mri results

01-06-2019, 12:54 AM   #1
Join Date: Jan 2019
Location: Miami, Florida
New to crohns- need help understanding mri results

I'm a 24 year old female and I've just been diagnosed with crohns in my ileum and ascending colon after 2 hospital stays, 1 ultrasound, 2 colonoscopies, 2 CT scans, and an mri (in addition to tons of bloodwork etc). It's been pretty overwhelming but I'm starting to adjust to the concept. During my first hospital stay I was put on solumedrol and then prednisone 40mg. I got alot better but then within a few days of switching to the oral medication (and at the same time to a solid diet) I started having diarrhea and a ton of pain again within a few hours after eating. At that point I stopped eating solids and tried going back to a liquid diet. I was drinking ensure and was just hoping to make it for a couple of weeks until my appointment with the gastro. I'm not sure what happened or why but within a few days I started having blurry vision, my heart was racing and I got very dizzy. We ended up back in the er. I ended up being in the hospital for 9 days. The doctors seemed very confused as to why I was still having such intense pain after eating if I was on prednisone. I mentioned to the gi that I have intense pain if I press on one specific spot (not where they were usually feeling for pain... Lower and more to the right) and that the pain that I get after eating starts at that spot. If I press down hard enough (which makes me nauseous) I feel a bump. They decided to do an mri... The mri came back showing something but they didn't seem to be able to really explain it to me and just said that it might be the start of a fistula and could be why I'm having so much pain. Then they discharged me since I had an appointment scheduled with a gi a couple days later. The gi just repeated what they said in the hospital and I will hopefully be starting remicade (if insurance approves it quickly enough) next week. I've been doing a lot of reading and couldn't find anything that sounded like what the mri report says. I read that fistulas start with an abscess but this is not an abscess... I'll include the text from the Mri below... Anyone have an experience like this or any ideas? Sorry if this post is confusing.

There are active inflammatory changes identified along the terminal ileum and proximal ascending colon consistent with Crohn's disease.

No abscess/organized fluid collection identified. However there appears to be a short segment of inflammatory soft tissue bridging extending from the terminal ileum into the adjacent right lower quadrant mesentery which may reflect early stage of sinus
tract formation.

There is hyperenhancement mild circumferential wall thickening identified along the last 8-10 cm of terminal ileum with extension to involve a short segment of the ascending
colon. There is no bowel dilatation/obstruction at this site. There is some extension of enhancement/inflammatory change into the adjacent right lower quadrant mesentery, without clearly organized fluid collection
01-06-2019, 02:26 PM   #2
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Join Date: Oct 2016
Location: Massachusetts

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It sounds to me like the MRI suggests you have the beginnings of a fistula extending from the terminal ileum into the soft tissue surrounding it. Thatís what the sinus tract is. Remicade is a good choice for you since it should prevent any fistula from forming and help get rid of the possible sinus tract. I hope you get approved quickly. With those MRI results you certainly should!
01-06-2019, 03:28 PM   #3
Join Date: Jan 2019
Location: Miami, Florida
Thanks jabee! I really hope I get approved quickly... I have an appointment this Thursday for my first infusion but they are still waiting for insurance to approve it. I just want to stay out of the hospital and feel more like myself again. I'm also going back to work tomorrow which I'm really nervous about... Not sure if I am physically ready but I really can't take off anymore. At least I'm going to start by going back part time for a few days...
01-09-2019, 07:41 PM   #4
Join Date: Oct 2018
Location: Baltimore, Maryland

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The thickening is likely scar tissue from prior inflammation, so it's likely this has been brewing for a while, even before you developed symptoms. I agree it sounds like a fistula may be trying to form in the terminal ileum, but it sounds like it was caught early.

I wish more physicians would go straight to MRI enterography for suspected Crohn's cases and not spend time with everything else. The MRI enterography is how I was finally diagnosed after many years of suffering. Colonoscopies, camera pills, CT scans were all inconclusive. I went to see a different doctor who ordered MRI, which was finally the smoking gun. This doctor said I've likely had Crohn's for 20-25 years.

If you don't hear anything soon about the insurance approval, it might not hurt to call them and give them a little nudge. I've had to speak to several supervisors before to get results.

Good luck and hope you feel better soon.
01-10-2019, 10:28 PM   #5
Join Date: Jan 2019
Location: Miami, Florida
Just an update : Insurance approved me and I went for my first infusion today. It was a very strange experience and I wrote a whole post about it on the remicade board. Unfortunately, as of right now it does not look like I will be able to continue with remicade,but I have an appointment with my gi on Monday to figure out what to do from here.

Crohn's Disease Forum » General IBD Discussion » New to crohns- need help understanding mri results
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