Update on me... Got my CT enterography results back.

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Veteran Member

Date Joined Feb 2009
Total Posts : 529
   Posted 1/28/2010 5:23 PM (GMT -7)   
Not sure if you guys remember, I had a CT enterography done a few weeks ago because I've been having a lot of pain/vomiting etc. I was thinking I had an abscess or something. I was wrong! Turns out what I've been going through lately have been extremely frequent blockages (as in almost constant) for over a year now. Bit of a shock that they never saw it, even when I went to the hospital, but my ileum is in a lot worse shape than they ever thought. I didn't hear fully what was going on, but my doctor ended up referring me to another doctor who is one of the leading IBD researchers around here... She said the severity is way out of her league. I'm really disappointed because I love my doctor, and I'm worried that I may not have such a good relationship with this new doctor. I was extremely lucky, my doctor showed him my scans today and he is seeing me next Wednesday before his GI clinic even opens because he's so booked. I'm kind of scared now, because I had a feeling there was a chance it might've been blockages, and I've thought I've had them on a few occasions, but it turns out that it seems to be where all of my pain is coming from. I'm really worried that they may want to do surgery on me after seeing the extent.

So far, med wise, I'm on Entocort (obviously not strong enough), Pantoloc, Cipro and Flagyl. Funny thing is that the Cipro/Flagyl combination have significantly helped - I've been only feeling bad now if I eat spicy food/popcorn (I managed a salad yesterday, and I'm still somehow OK). Is this normal with a stricture? I'm hoping that the fact that I am responding to meds means that I might not have to resort to surgery. My doctor mentioned switching me to some stronger drugs, so I'll be interested to see what they decide... Hopefully whatever it is worked. I'm pretty overwhelmed today - I know I'll feel better when I see this new doctor, but I don't like hearing that some guy who is an expert in IBD seemed to think that it's so urgent that I see him. At least I know I wasn't imagining things though! lol.

Had to vent... it's been a looong day!

Veteran Member

Date Joined Feb 2009
Total Posts : 1879
   Posted 1/28/2010 5:29 PM (GMT -7)   
Valerie, did they see any inflammation in your intestines? Sorry about the blockages. Sounds like the meds are working though. I had an enterography a few weeks ago. I haven't seen many posts here about them. Are they as good as a pill cam? What other tests had they done on you where they didn't see the blockages? I understood that the enterography was more sensitive than a regular ct scan b/c of the stuff they make you drink. I hope you get good news next Wednesday and continue to feel better.
diagnosed 1/09 with "diverticular colitis" ?? location: sigmoid colon
localized scleroderma, IBS, asthma/allergies,
low thyroid,claritin, advair, singulair, diovan, progesterone, lialda, VSL#3 probiotic, Vit. D

Blood test positive for Crohn's via prometheus ibd serology panel

Veteran Member

Date Joined Feb 2009
Total Posts : 529
   Posted 1/28/2010 5:38 PM (GMT -7)   
Yes, my inflammation extremely severe in my ileum, bad enough that things aren't passing, apparently. The results are extremely specific for the enterography, probably not as good as a pill cam but I have no regrets. The stuff they made me drink was actually a litre of milk, could be better but at least it isn't barium right? lol. It was a really easy test, the prep was only a mini prep and it gave me the results I need. I've had ultrasounds and a colonoscopy (and a barium enema) and they didn't see the extent of the inflammation. They saw all saw a lot of narrowing going on, but for some reason, with this test they seemed to have realized it was a lot worse than they thought it was. It's funny because I can usually feel this hard mass over there, and it turns out it's where I'm having these blockages. Most of my pain is near my belly button though, if not a bit above, and the pain near my ileum is more of a pressure-like/bruised feeling.

I'll say though, definitely worth the $520! (I'm Canadian but I did this test privately).
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