CT-E Results

[Reflection]

Hi all....Well I am back....sigh... Been almost a year...I hadn't been back here because I thought they had ruled out Crohn's. They were looking at SOD. Well, now we are back to Crohn's. All I know is I want answers. The pain for me is getting worse and worse. I have times when it ebbs to a dull roar but now it is back with a vengeance. I just want answers, like I am sure all of you do!

First Question what causes pain in Crohn's and what do you do for it? I have times when my pain is terrible. Like now. My mine is right side just below my rib cage and feels like it is drilling through my back. Like a gallbladder attack but not since I don't have one. Also pain, more burning dull in the lower right.

2nd question Ct-E results..

I had a CT Enterography. Just got the results today. I am now scheduled for a capsule endoscopy on Oct 2nd. I thought I would post my CT-E results and see if you all had any suggestions for questions that I should ask the doctor and possibly help me understand what some things mean. I know you are not doctors and can't interpret results.... but I also know many of you are familiar with the terminology.

Findings: (I'll skip of obvious normal results) Attention is directed specifically to the bowel, the normal jejunal-ileal enhancement gradient does not hold (what does this mean??), with approximately 8 cm of distal ileum exhibiting mucosal thickening, and definite increased enhancement (?). There may be a couple of other short areas of unusually intense ileal enhancement, but I a not sure of that (yes that is what he wrote). Sigmoid mucosa enhances more briskly (?) than usual, but this is probably normal, taking into consideration the appearance of the remainder of the colon.

Impression: 1. Although the findings are subtle, I am suspicious of small bowel inflammatory disease, with increased mucosal enhancement and the mucosal thickening involving the distal 8 cm of the ileum. Crohn disease seems most likely. This is no transmural abnormality, and no sign of stricture that would prevent capsule endoscopy.
3. See comments above regarding the sigmoid colon. This is probably normal but I cannot exclude an element of colitis with complete confidence.

Thanks for the input all. Still praying it isn't Crohns. Had upper endo and endoscopy with biopsies last year. All negative. But also want answers so I can get some kind of treatment and start to get my life back.

 

[nogutsnoglory]

Inflammation is the big cause of the symptoms in IBD. You'll want to ask about the extent and location of inflamed tissue and what can be done as far as medication and dietary adjustments.

 

[Reflection]

Thanks. I have been on a restricted diet for over a year now. Gluten Free, Dairy/Lactose free etc. Last four months have been Low FODmap. It has helped with the D. Instead of 10 times a day I am down to about 5. Didn't help with the pain though.

 

[Clash]

When you say they were leaning toward SOD, to what are you referring? Since it feels like a fall blazer attack but you have no gall bladder have they considered billiary sparms for that area of pain? Sphincter of Oddi can cause severe gall bladder like pain in that area and can be tested for with an ERCP or MRCP.

I don't have any info about your results but it does seem from the wording that a pill cam could be helpful. Hope you find answers and relief soon!

 

[Reflection]

Hi Clash. Sphincter of Oddi= (SOD). I had an EUS last year and did not have any dilated bile ducts. Also my pancreatic enzymes have not been elevated and only my Alk Phos for my liver. But not elevated enough to indicate SOD. I have been on antispasmodics and they, unfortunately, have not helped with the pain. Due to this Gi doc is pretty sure it is not SOD and due the risk of pancreatitis with an ERCP she doesn't want to do it. She thought about doing MRCP but decided to see what the CT-E showed first. So now the capsule. I feel like I have been on a roller coaster. Crohns...no SOD...no Crohns.... Think I need a dart board. :lol:

 

[Clash]

I thought you might've been referring to sphincter of Oddi bit wasn't sure. I have had GI problems for sometime, then what I thought was gall bladder attacks. I had mine removed though it turns out it was normal(removed because HIDA scan was 24%), md referred me to surgeon who removed it. The GI thought it was needless surgery. Still had the pain attacks after surgery and strangely they can be brought on by pain meds, IV dilaudid and morphine as well as pill form hydrocodone. I never had this issue with pain meds until my gall bladder was removed. I need further tests but keep putting it off since the attacks aren't frequent.

I hope that the pill cam will give you some answers, I know you must feel like the waiting and testing is endless! I hope you find relief soon!

 

[Reflection]

Clash, glad your "attacks" are infrequent! I was very ill for weeks when they took my gallbladder. My ejection fraction was 6%. But before they took my gallbladder I was vomitng constantly, lost 35 poundd, and 104+fever for six weeks. Last straw that finally made them do something was my pee turned brown and all my liver enzymes went through the roof. Thankfully the gallbladder removal and Cipro got me back on my feet, but the right side pain has continued off and on. But now it is always there just more severe at times. I have a friend that has SOD and she gets pancreatitis a couple times a year.