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Crohn's Disease Forum » Parents of Kids with IBD » C is having symptoms


 
03-25-2013, 08:36 PM   #301
Clash
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Ugghh...since C hasn't had the joint pain I didn't include it in my questions and completely forgot! Ughhh...I'll have to call GI nurse.
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Clash
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-25-2013, 09:07 PM   #302
my little penguin
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btdt tooo many times
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03-25-2013, 09:08 PM   #303
Clash
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But back to what I was going to ask, "What's everyone's impression of the MRE summary?"

It seems the combo of MTX+Remicade May not be the answer and though we will still be utilizing it forvthe time being, C's GI is always going on,about full mucosal healing being the goal so I do smell change in the air.
03-25-2013, 09:10 PM   #304
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Sorry MLP we posted at the same time. Yeah I was so proud of getting each question answered until Tesscorm busted my bubble and reminded me about the joint pain! I even had the summary since last visit on hand along with the questions so it should've rang a bell when I went over it!
03-26-2013, 06:59 AM   #305
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Sounds like a good appointment. Does sound like the MRE shows more involvement than the GI mentioned. However you did say he was going to look at it in more depth . Well done for getting most of your questions answered, I think forgetting one thing is pretty good. I usually come out having discussed stuff totally different which then wipes all my questions out of my mind and end up having to phone the IBD nurse and ask all the original ones . Last time I jokingly said to the GI "I should write a list" and he says very seriously "yes you should"! Well that was me told
03-26-2013, 07:53 AM   #306
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Sorry Clash ... hate that I burst a bubble!

Rather than just looking at this MRE, I would think what's relevant is how it compares to the last one. This one confirms inflammation/narrowing in the ICV, some in the ascending colon and possibly in the perianal area. Did his last MRE show inflammation in the same areas? Was narrowing noted in the last MRE or proximal dilation?

I think you and I discussed proximal dilation??? That's when the area just before the narrowing bulges out because everything is getting backed up due to the narrowing. My 'guess' is that if there is no proximal dilation, the narrowing is not sufficient to slow down the progression of food. Also, and this is total conjecture on my part but... I believe scar tissue has no 'give' (flexibility), which might be more likely to lead to proximal dilation. If narrowing is due to inflammation and if inflamed tissue is still flexible, this may NOT lead to proximal dilation as food/matter can still pass through, however, perhaps it is the 'stretching' of the inflamed area that causes pain. ??? But, this is just me thinking out loud, not something I've ever discussed with the GI nor read about... (but, hmmm, unless someone else knows if this is accurate... another question to add to my list! )

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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-26-2013, 08:29 AM   #307
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Sascot, you sound just like me! It has happened to me every time but this one, I was so proud I got all the ques. answered! Can't believe I forgot joint pain but I swear it is truly out of sight out of mind so if he's not complaining then I forget about it.

Tesscorm, C hasn't had another MRE this was his first. The imaging he had at dx was an MRI, I know it must not have been as in depth either because it took only 30 minutes at most the MRE to much longer. I was told at the time the MRI showed thickening in the TI. There was no mentioning of the colon. I'm not sure of the comparison of the two except the first colonoscopy the dx GI could get through the ICV and this colonoscopy the peds GI could not.

The GI said that he didn't believe the narrowing he saw on the scope and MRE was causing the issues
C sometimes has with filling up too fast or regurgitating the last bite that it was more likely due to acid reflux or mild gastritis and back on the nexium we must go.

I was surprised about the mention of enhancement in ascending colon since our discussion revolved around C being a good surgical candidate due to him not have full colonic involvement but I suppose though his full colon isn't involved the MRE picked up something.

And I know it states uncertain clinical significance about the perianal tissue but of course that is the one I'm most curious about! Thanks Tesscorm, I appreciate your two cents, this never seems to be black and white.
03-27-2013, 01:36 AM   #308
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I don't know how I didn't read this for the past 3 days, but I missed a lot. Took me forever to read it all! I'm glad you got answers, although it seems you have more questions now from your answers, but that happens, doesn't it?

I would have the same questions about the colonic involvement - what did the colonoscopy show? Did he have one of these recently?
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Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
03-27-2013, 07:26 PM   #309
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Carol, he had a colonoscopy the day the before the MRE and visually his colon looked good, the GI was unable to get the camera through the ileocecal valve but got the forceps through to take biopsies.

C had his remicade on Monday, he was already feeling good before the infusion so maybe the issues the Friday before were a fluke. So I just have my fingers crossed we make it 6 weeks.
03-27-2013, 11:21 PM   #310
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I found it odd that my dd had her colonoscopy with only one mildly inflamed area, then had her video capsule 9 days later and it showed inflammation throughout the small bowel AND numerous ulcers throughout the colon. I chalked it up to two clean outs in 9 days, but it was enough to convince the doc of her crohn's. I don't know what to think when the results vary so much a day a part...
03-28-2013, 08:08 AM   #311
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Carole, remember that scopes will not show much inflammation in the small bowel... at best, GIs can usually just get into the small bowel a small distance. And, I believe (could be wrong??) granulomas can only be found through biopsy (not visually seen). But, I would wonder why the ulcers were found by the pillcam and not the scope??? I would have thought that ulcers would have been seen by the scope. Perhaps you're right re the two clean-outs?
03-28-2013, 09:01 AM   #312
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I think the difference in C's case may be I don't have the results of the scope just the MRE. I only have what the GI told me right after the scope and then what we went over in his office on Monday. Since CD can be throughout the bowel wall compared to UC that deals with the first layer I wondered if visually in the colon all looks good but when doing the MRE it picked up a tiny bit of inflammation within the bowel wall of the ascending colon?

What I posted above was the impression this is the more in detail findings:

Thickening of bowel wall ileocecal valve is demonstrated with mildly increased enhancement.

Subtle increased enhancement is identified within the wall of the acsending colon without significant bowel wall thickening. No stricture or fistula identified. No abscess seen.

Navigator images demonstrate usual peristalsis.

Subtle enhancement is present along the right perianal soft tissues best seen on image 10 of series 51 of uncertain signifcance. No perianal fistula is identified.
03-28-2013, 10:09 AM   #313
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That makes a lot of sense Clash... I'd never thought of it that way.
03-28-2013, 10:16 AM   #314
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Makes sense to me too, Tesscorm but I wouldn't start thinking of it that way permanently because who knows if I am right!!!! HA!

Also the bit about "Subtle enhancement is present along the right perianal soft tissues best seen on image 10" I wonder if this is refering to his skin tag? I'm not very knowledgeable about what constitutes the "perianal area".
03-28-2013, 10:37 AM   #315
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Sorry, can't help you with that as it's never been an issue with Stephen.
03-28-2013, 11:08 AM   #316
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Just catching up here Clash. I'm glad you have some answers, but sorry that it leaves you with even more. Funny how that happens huh!

Tess, for some reason I thought that granulomas could be visually seen, not just microscopic ? I am out of state so I can't get my records out for Gab, but I think I remember (pre biopsy results) after Gab's colonoscopy, when she was 9 years old, her doctor saying that Gab has granulomas throughout her entire digestive tract and that's what made her think she possibly had Crohn's back then but didn't want to "label" her. (also one of the major reasons why I can't shake the guilt of not pursuing an official diagnosis then ~ but thats an entirely different novel I need to write ). I have copies of all the doctors notes from back then so when I get back home I will look it up. Maybe it was said after the biopsies came in and I'm just remembering wrong ? Who knows !
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03-28-2013, 11:15 AM   #317
my little penguin
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Granulomas are microscopic cluster of specific type of cells.
You wouldn't be able to tell visually other than redness or ulcers but
The doc wouldn't know by looking- need a microscope for that one .
03-28-2013, 11:16 AM   #318
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C showed no granulomas at the site of the ICV and I assume with all of the other biopsies. The PA was really happy about that. I am assuming C could've had ulcerations or visible inflammation beyond the ICV but since the GI was unable to get the camera through the ICV then no definitive answer although the GI did say there was some inflammation present so again I assume that the blind biopsies showed inflammation and the MRE confirmed this with the finding of "enhancement".

Anywho...CD sucks!
03-28-2013, 11:31 AM   #319
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Thanks MLP, it must have been after the biopsies than. I was trying to remember way back to 11 years ago


Anywho...CD sucks!
Amen to that one !
03-28-2013, 11:39 AM   #320
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Get a copy of the scope report
We keep copies of all tests including scopes
Makes transfer to adult land easier
03-29-2013, 11:21 AM   #321
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Yeah, when he said let me get you copies I assumed he meant of the scope too. I plan on getting it sent to our GP and picking up a copy there.

So his labwork just came back and all looks normal, I still have to get the report and look at it since the sub-nurse accidentally called the Hubs instead of me. He's learning though because he told her she needed to go over each test and tell him each one was good otherwise he'd hear it when he called me!

She said Vit D was still low, what the heck, he takes two a day of the biotech brand and 3 equals 5000 so he is getting like 1666 maybe I should up it to 3.
03-29-2013, 12:09 PM   #322
my little penguin
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here is the problem- you can add a ton of vitamin D but if there is on going inflammation- it inhibits the absorption of Vit D.
at least according to one study-
so while adding is nice it is not stopping the cause of the low Vit D KWIM
03-29-2013, 12:45 PM   #323
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Yeah, that is what I am thinking too. So hunky dory tests and yet we know there is still something going on because I can't get his Vit D up. Although I guess scar tissue would affect absorption just as much as inflammation.
03-29-2013, 12:59 PM   #324
my little penguin
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Also asthma allergies etc can also cause inflammation and low vit d
So it could be a combo thing
03-29-2013, 01:05 PM   #325
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Great, a whole trifecta of issues to affect Vitamin D!!! I've thought of letting him out in the sun for 30 minutes w/o sunscreen but it just freaks me out with the MTX and Remicade.
03-29-2013, 01:06 PM   #326
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Stephen uses a liquid vitamin D in an oil based liquid. Is that easier to absorb opposed to capsules? I think that was the reason I began buying the liquid version. Very inexpensive and available at any health food store.
03-29-2013, 01:13 PM   #327
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Tesscorm, do you know if this type has all the cofactors that go along with Vit D like Vit K and such? I've thought about looking into them just always forget when I'm at the store.

Also, I'm not so naive to think C remembers to put sunscreen on when I'm not around, it's the same boy that when he was young would forget to take baths, brush teeth, hair or any other hygenic process if I wasn't around!
03-29-2013, 01:43 PM   #328
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Stephen takes Natural Factors Vit. D3 drops. Each drop contains 1000 IU Vit D3. The only other ingredients are certified organic extra virgin olive oil, flaxseed oil and vitamin E. But, Stephen takes it just before bed, when he begins his EN formula, which includes Vit K plus all the other vitamins/minerals in the formula.
03-29-2013, 01:47 PM   #329
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Ok thanks I'll look into it and see what we have around here or possible I could just order offline.
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