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Posted 5/14/2009 4:35 PM (GMT 0)
I am interested in knowing how accurate CT scans are for recognizing inflammation, etc...  What is your experience?  My 15 year old son with a history of crohn's and several other  side effects of crohn's and treatments is experiecing nausea, severe pain under the belly button to the right low quad. (wakes him up at night), tenderness in that area, alternating between diarrhea and very hard to get out stool, joint pains on and off, feels better when he doesn't eat food, and severe fatigue...kind of sounds like a flare to me...but he had a CT scan yesterday that was read as normal?  Is there a chance he is flaring but it is not showing in the scan? 
Posted 5/14/2009 4:44 PM (GMT 0)
I had a CT scan that showed no inflammation about a week after a scope that showed mild inflammation. But I think mine gets really bad really quick and if I take steroids then it can get really better really quick. I have UC so that might make a difference.
Posted 5/14/2009 4:53 PM (GMT 0)

Not sure just how accurate the CT is, but the combination of blood work, particularly CRP and Sed. rate, and a Small Bowel Follow Through will give a pretty good indication. By the sounds of where the pain is, (quite common), it likely involves the Terminal Illium, (also quite common). Perhaps you could give some more history of treatment. There are plenty of experienced people here. You will likely get some good advise. 

Tom.

Posted 5/14/2009 5:11 PM (GMT 0)

Some treatment background:

Diagnosed with Crohn's (colon, terminal illeum, small bowel and stomach) in Oct. 2005, started pred. and 6MP, within 3 weeks had pancreatitis from 6MP, started Remicade, colazal, and others.  Since that time, he has suffered from several bouts of kidney stones including surgery to remove stones that were blocking, he was diagnosed with psuedotumor cerebri, osteoporosis (3 fractured vertebrae), secondary adrenal insufficiency all from complications of crohns or of crohn's treatments.  Also has been treated for C diff 4 times, has a gj tube for gastroparesis (not using for feedings now as his gastroparesis seemed better), had a reaction to Flagyll that destroyed his gall bladder (had that removed).  He is hospitalized 6 to 8 times a year, has been on TPN a lot, and can no longer take steroids as ordered by endocrinologist.  That is a brief history, the last several months he has seemed better, still had his bad days but better overall.  He currently is on Humira (for almost 2 years now,went on it after Remicade lost effectiveness).  At this time he is on the least amount of meds as he has ever been on since diagnosis.  He takes Humira weekly, every two weeks did not hold him, Colazal, Dicyclomine (antispasmatic for IBS), Nexxium, Growth Hormone shots, and things like Tums for calcium, vit. D, iron...


Posted 5/14/2009 6:35 PM (GMT 0)
Maybe it is his IBS and not a flare.
Posted 5/14/2009 10:44 PM (GMT 0)
Hi Joan,

Every once in a while I read a post like this and wonder how you get through so much adversity. I can't believe the ride you've been on. I really hope that the current treatment he is recieving will keep him out of the Hospital for some time to come. Good luck with everything.

Tom.

Posted 5/14/2009 11:57 PM (GMT 0)
Hi Joan,

I had a SBFT and two CT scans with IV contrast and neither one showed inflammation definitively. It was not until I had a CT-Enterograph (IV contrast AND oral contrast) that they were able to see in inflammation, about 6 cm of inflamed area near the terminal ileum.  Did he have a CT or CT-E?

I have Crohn's issues at the terminal ileum and probably also IBS...when it is a problem, the pain is in the lower right quadrant. I personally have had nausea and discomfort at night or in the early AM. I found that if I eat dinner by ~6PM (previously I was eating closer to 9PM), limit how much I eat, and avoid very hard to digest foods (e.g. red meat) at dinner time,  it is less of a problem. I'm not sure if this is relevant to your son.  Best of luck I hope he feels better soon.

Posted 5/15/2009 1:07 AM (GMT 0)
He had the oral contrast and IV dye so maybe it is his IBD...I just think it is more with all the joint pain.  He says this pain doesn't feel like the crampy IBS pain.  Who knows.  The doctor wants us to up his IBS meds to see if it helps.

I would be thrilled if it were his IBS rather than IBD because that would mean the Humira is still effective.  If it isn't, that will be a whole other issue.

Posted 5/16/2009 6:05 PM (GMT 0)
if its not showing on ct he could have inflammation - but not as severe as he had - so that may mean humira is working - just not 100% or depending how long hes on it maybe it needs more time. cts aren't diagnostic of inflammation - so no dr should take it to be 100% - maybe if it contiunes insist on a colonscopy with biopsies to see whats going on - did the doctor mention if any thickening was seen? b/c thats a risk of humira - quick healing and scarring / thickening of bowel wall that can give symptoms like your sons - so could be stricture type related thing. if it continues don't just hope its ibs - b/c it could be easily enough solved -so don't despair - but dont let it go either - once your doctor is aware & alert of whats going on. also on a note when i first went on biologics like humira i went the other way ie constipated - the drugs work so quick they can shock the system - your son may need a gentle laxative - constipation or near constipation is no barrel of laughs for an already sensitive crohns gut - remember its still quite sensitive - been through a lot!!
Posted 5/16/2009 6:07 PM (GMT 0)
oh yea - anything ibs related wont cause nocturnal/night symptoms - night is a good indicatior of ibd
Posted 5/17/2009 1:51 AM (GMT 0)
Those CT or CTE films are only as good as the radiologist reading them and his/her knowledge of, experience w/recognizing Crohn's.

I just had a CTE myself. No symptoms other than frequent low grade fevers which could be due to my COPD. The radiologist says there is indication of involvement of the duodenum and jejunem as well as the ileum. Yeah, uh, huh. Since I have a history at Mayo Clinic, MN, I'm sending the films and reports to my Mayo gastro Monday before I jump to any conclusions or make any med adjustments.

Are you working w/a local gastro or does your insurance allow you the freedom to travel? I'd be inclined to want to take my son to Mayo Clinic, MN, or Cleveland Clinic, or a leading teaching hospital gastro department nearest you if you haven't already been able to do so. Check US News & World Report's online website for their listing of the top 50 teaching hospitals by specialty to see what is close to you for gastroenterology.

Good luck and God bless.

Posted 5/17/2009 5:05 AM (GMT 0)
Just a couple of things - first, stop the Tums. It is not well absorbed as a source of calcium and it depletes stomach acid needed for the stomach enzymes to function properly. Look for Calcium/Magnesium citrate - you need both together. Second, the vitamin D should be in the form of an emulsion and at least 2000 IU per day should be taken. From his history, he would appear to be very deficient. (Biotics Research Corporation makes a vitamin D emulsion that is very reasonably priced). Finally, the pain in the lower right quadrant sounds like a stricture - but I would have thought that it would show up on a CT scan. The feeling better when not eating and fatigue both sound like a flare, but could also be from IBS. Gas can cause a lot of pain in IBS. Sorry, not much help... Hope you get some answers soon.
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