MRE experience and RESULTS

[Stressedmom]

Our son had the MRE with contrast at a local imaging center and it went smoothly. He took zofran before and didn't mind the 3 bottles of Breeza, though he had chills and needed a blanket after second bottle. He had some mild stomach pain and gas, but not a big deal. He handled the machine like a champ with earplugs, the prep videos we saw on you tube, pratice leading up and guided imagery. He has come a long way since his early years when he had so many sensory issues! Now as the contrast exits the building he has some crazy BMs and mild cramping, but again manageable.

Results are already in. Please share your thoughts. Impression: "Subtle enhancement and wall thickening of small bowel loops in right flank, likely jejunum. Findings could be transient or very subtle early changes of inflammatory bowel disease. Normal terminal ileum."

Also GI doctor said Calprotectin taken at time of colonoscopy (with whatever fecal matter he could find) was 110. He originally said something else, but then gave the right one. I got the official labwork on patient portal and it is 110, which I understand in Crohn's world doesn't raise eyebrows so much.

I assume we just watch and wait and may need to do a repeat MRE at some point. I don't mind another MRE now that I see he can handle it or the follow up EGD we need in 6 months for BE. I just really hope we can avoid repeat colonoscopy (until he's 45!) because the easiest prep out there landed him in the ER. Not sure what our options are unless zofran would have made the difference.

Will be getting records reviewed at a major hospital, but you all know so much I wanted your input. Don't expect to hear from doctor for a while. It's a shame symptoms didn't resolve with the treatment for BE.

 

[Scipio]

"Subtle enhancement and wall thickening of small bowel loops in right flank, likely jejunum. Findings could be transient or very subtle early changes of inflammatory bowel disease. Normal terminal ileum."

Bowel wall thickening usually indicates the presence of inflammation. So this report basically says that they saw some subtle signs of inflammation in the small bowel on the right side - possibly just temporary and not established long-term inflammation. The good news that the terminal ileum, the most common location of Crohn's inflammation and/or ulcers was clear of any signs of disease.

 

[Stressedmom]

"Subtle enhancement and wall thickening of small bowel loops in right flank, likely jejunum. Findings could be transient or very subtle early changes of inflammatory bowel disease. Normal terminal ileum."

Bowel wall thickening usually indicates the presence of inflammation. So this report basically says that they saw some subtle signs of inflammation in the small bowel on the right side - possibly just temporary and not established long-term inflammation. The good news that the terminal ileum, the most common location of Crohn's inflammation and/or ulcers was clear of any signs of disease.

Thanks. It is good news about the terminal ileum because the scopes showed patchy areas of acute inflammation there.

I wonder, can SIBO cause the inflammation in the small intestine that was found? The doctor was supposed to test for that at scopes, but forgot. I am reluctant to try the other SIBO test because I think it uses lactulose which gives my son dizziness. Plus, I think it's less accurate?

 

[my little penguin]

Crohns can be anywhere located from the mouth to the anus with inflammation
You can have crohns and not have the TI inflamed .
What cause the inflammation in this case would need to be discussed with his GI
Sibo would not cause inflammation imo
But a lot of other things can cause random inflammation in the Gi tract
Imaging such as MRE and colonoscopy are the gold standards for monitoring when things are questionable.

Definitely discuss with your Gi
And get a second opinion read on prior biopsy slides plus this MRE imaging review
They may want a pill cam to see what is going on inside the small intestine

 

[Scipio]

Thanks. It is good news about the terminal ileum because the scopes showed patchy areas of acute inflammation there.

If the doc actually saw patchy acute inflammation in the ileum via colonoscopy, I would take that evidence over the MRE. Direct eyeball observation is more reliable than interpreting images and shadows on an MRE readout.

 

[Stressedmom]

Crohns can be anywhere located from the mouth to the anus with inflammation
You can have crohns and not have the TI inflamed .
What cause the inflammation in this case would need to be discussed with his GI
Sibo would not cause inflammation imo
But a lot of other things can cause random inflammation in the Gi tract
Imaging such as MRE and colonoscopy are the gold standards for monitoring when things are questionable.

Definitely discuss with your Gi
And get a second opinion read on prior biopsy slides plus this MRE imaging review
They may want a pill cam to see what is going on inside the small intestine

Heard from doctor and he is recommending pillcam. He actually isn't associated with a pediatric hospital anymore even though he's a pediatric GI (I know, it's surprising, but somehow he works with an adult hospital for his procedures) and his office is too far away to have to go back as often as we need to, so we are getting in with someone closer who is on the team that works with both Children's hospitals in the area in late July. I call often in case there is a cancellation in the hopes we can get in earlier. The world of pediatric GI here is a total mess on there are many complaining on local listservs about how hard it is to get decent care. It was even when our son was a baby and I was so sad when we found someone great and she left. We are going back to that practice and it is is a revolving door where few stay. The newer doctor we wanted most at that practice is sure enough already on her way out. The one we saw last year over zoom for 25 minutes with no inspection of our son left soon after that appointment. Regardless, I need to be in the door because for any future procedures we need to use the hospital near us, especially if we have another emergency.

The good news is we got our son swallowing his omeprazole pills. I looked up the size of the pillcam and it's bigger, but if they let him drink more than a few sips of water, and we keep him relaxed, I think it will be doable. I also need to find out more about prep options. I read some will use magnesium instead of Miralax. Miralax is a no go after our scope prep and post scope experience. He's actually intrigued by the idea of having a camera go through his digestive system. He asked how it comes out and the look on his face was priceless when I told him!

Have you had anyone on here before where Crohn's couldn't be ruled out by scopes or even MRE and then the diagnosis was made after pillcam? I assume there is still a chance this is just random inflammation? Our doctor did say he saw cases like ours where the Crohn's diagnosis was not made until a few years later which is why he speculated about pre-Crohn's and early Crohn's.

We will be doing the whole second opinions thing with BC even though we don't all have the info until post pill-cam because we want to get feedback on treatment course for BE. I found research suggesting a lower dose is fine too with less risk of long term effects. On the online forums the level of meds our son is higher than what the adults take.

 

[Scipio]

One thing that I've found helps me swallow big pills (or a camera) is to swallow them using a fizzy drink instead of plain water. There is something about the fizziness of a soda or sparkling water that helps the thing slide down more easily and decreases the choking reflex.

 

[Stressedmom]

One thing that I've found helps me swallow big pills (or a camera) is to swallow them using a fizzy drink instead of plain water. There is something about the fizziness of a soda or sparkling water that helps the thing slide down more easily and decreases the choking reflex.

This is a great idea that would never have occurred to me. Thanks. Since he actually sort of liked the taste of Breeza, maybe I will ask if he can have a few sips of Sprite to swallow it. I may ask if he should take his PPI that morning before the pillcam. Not sure if that would help the situation as well.

 

[Maya142]

Have you had anyone on here before where Crohn's couldn't be ruled out by scopes or even MRE and then the diagnosis was made after pillcam? I assume there is still a chance this is just random inflammation? Our doctor did say he saw cases like ours where the Crohn's diagnosis was not made until a few years later which is why he speculated about pre-Crohn's and early Crohn's.

There was definitely one parent on here a few years ago, whose daughter was diagnosed by pillcam. I also know of a parent whose son has juvenile arthritis (the same type as my daughters, which is associated with IBD) and he was diagnosed with Crohn's despite clean scopes because he had ulcers and inflammation seen on pillcam in his small bowel. His main symptoms were abdominal pain and weight loss.

I do think seeing a pediatric GI at a Children's Hospital will help - they tend to be good at accommodating kids for procedures/scans. There are many preps available, so hopefully your GI will be able to suggest one with out the ingredient in Miralax. Magnesium Citrate is one option.

In terms of the omeprazole, my daughter had her pillcam while on a PPI. She was told to continue it. She also wasn't given a prep - just was told not to eat after midnight the day before and wasn't allowed anything till like 2 pm the next day (not even broth). The pillcam was pretty easy. Your son will have to do a dummy pill first and once that passes, then the real thing. It is bigger than omeprazole capsules but they can place it by endoscopy into the duodenum if he can't swallow it.

I think the pillcam does make sense given that the MRE was not clean and showed signs of inflammation. A Fecal Calprotectin of 110 isn't that high (it would be considered borderline) but given the scopes showed some inflammation and the MRE did too, it would be good to check the rest of his small bowel.

A second opinion is a really good idea in a case like this. It should also help clarify the dosing of omeprazole for BE. I think your son is on double what my daughter is on, and while she doesn't have BE, she does have pretty bad Gastroparesis and reflux and her GI considers her dose high. Also, if he is struggling with omeprazole capsules, there is a liquid version available (it's called First Omeprazole suspension). My daughter does better with liquid meds due to the Gastroparesis, so she has that twice daily.

 

[crohnsinct]

I have only seen one person dx'd with pill cam when the scope didn't reveal inflammation and the MRE wasn't a slam dunk BUT they had sky high inflammatory markers, anemia, were rapidly losing weight, in a lot of pain and throwing up regularly. Because they were so symptomatic, the GI decided to keep looking.

 

[Scipio]

Have you had anyone on here before where Crohn's couldn't be ruled out by scopes or even MRE and then the diagnosis was made after pillcam? I assume there is still a chance this is just random inflammation? Our doctor did say he saw cases like ours where the Crohn's diagnosis was not made until a few years later which is why he speculated about pre-Crohn's and early Crohn's.
.

I was diagnosed by pill cam after normal scopes. MRE was not done at that stage. My main symptom was severe anemia, and they were looking for the source of the blood loss. Colonoscopy was perfectly normal, but Crohn's was diagnosed after the capsule camera showed aphthous lesions farther upstream in the small bowel than the scopes could see.