Crohn's disease gone?

CT scans, especially if it didn't include contrast, can easily miss things seen on a colonoscopy.

Emergency Rooms do CT scans because they're cheaper and quicker, and they can usually find life-threatening things like leaks, toxic megacolon, blockages, etc, but they often miss inflammation.

Follow up with your gastroenterologist and let him/her know you went to the ER for pain.

edited to fix spelling/grammar

Post Edited (beave) : 2/19/2017 7:15:17 PM (GMT-7)

Crohns doesn't go away. You can go in remission. CT scans can miss inflammation. I would contact my GI and have additional testing done to confirm my diagnosis and to find out what is going on.

I have discovered that sometimes ER visits miss things. I once had to wait almost 4 hours in an ER because the nurse thought I looked healthy so I must have been exaggerating. I had been there 2 times before (in the last 4 weeks) for an obstruction. CT missed the obstruction but did catch the dialated colon.... That hospital stay was about 30 days. Thank God my GI got there before they missed anything else.

I hope you feel better soon!

Clo

What medications are you on now for your Crohn's?

The abdominal pain could be cramping in your colon due to the inflammation in the cecum.

Where are you located? Pentasa is a medication for ulcerative colitis. It's not effective for Crohn's. Lots of doctors give it to Crohn's patients, but it was never approved for Crohn's and research to date has shown it's just not very effective at all for treating Crohn's.

A short-term drug you could try is Entocort. It's modestly effective if you have disease in the area where the small intestine meets the colon - and that's where yours is. It's to be used for a couple of months at a time, so it's not a long term "maintenance" medication.

Yeah, I don't think Pentasa is going to be sufficient to treat your colon - it sounds heavily inflamed. Entocort is a much better choice and is okay to take for a few months at least, though like beave said it's not a long-term medication.

I have literally never heard of Crohn's being associated with bipolar disorder. But, pretty obviously, people who are bipolar have as much chance of getting Crohn's as people who don't, so inevitably there are going to be a few people who have both conditions. I wouldn't take the supposed link on board, to be honest.

Drw59,

Just a thought, ask to speak to the office manager at the specialist you are trying to get in to see. Explain the severe pain and blood. She may be able to get you in. I also called in daily to inquire on cancellations. Basically I probably bugged the living daylight out of them until they finally said enough and squeezed me in...Lol... But when I went in I took a box of bakery donuts and cookies split 3 ways (front desk, back desk, doctor and nurses) to say thank you.

When you go in make sure you have a copy of all your medical records from the hospital including x-xrays, CT, or MRI. (Get an extra set of copies for you)

I agree with the others in that you need to be on medication as soon as possible.

When you first get a diagnosis of Crohns it is normal to sort of panic. Its a scary time. So just know that you might not always act as you normally would but do try to control yourself. Anger and a short temper are also normal. One of the initial phases is fear, frustration, and why me..quickly followed by anger because this is not what you wanted or deserved and it seems as though alot of things are no longer in your control. Deep breathes and talking to others does help. I don't think you'll find a better support group as the people here.

Hang in there and let us know how it goes.

Clo

Jen77, what kind of CT scans have you had? Have you had CT enterographies? Did your CT scans include oral and IV contrast? When you say the scope shows how bad it looks after the CT scan doesn't show much, are you referring to how bad your *colon* looks?

CT scans can definitely miss a lot for the colon, unless you do a CT colonography. But the other CT scans like CT Enterography are really good for the small bowel but, yeah, not so good for the colon, in part because the oral contrast fills the small bowel but doesn't fill the colon.

Yeah, if your Crohn's is in the colon, that's why the CT scans aren't showing anything. The contrast is intended to fill up the small bowel. Sometimes some of it gets into the colon, but it's usually not enough to fill it up enough to get good images there.

There are a couple of types of CT scans that can get good images of the colon:
1) CT Colonography. This is a "virtual colonoscopy." And like a real colonoscopy, you have to do a prep to clear out the colon. Then they insufflate the colon (they pump you up with air!) and take the CT scans.

2) A CT scan where they first do an enema with a contrast agent. Not a pleasant procedure (but what is?), having to have the enema and then try to hold it in during the scan. This can give good images of the left colon (rectum, sigmoid, descending), but the enema doesn't get all the way to the right side, so you don't get good images of the full colon.