Flare has Ended Will Pill Cam Be Useful for diagnosing IBD?

[jac521]

Flare has Ended Will Pill Cam Be Useful for showing Inflammation?

I was told that the Pill Cam was needed to see active disease. My flare is gone so was wondering if this test will be for nothing?

I am tired of having tests that show nothing either because of being on Entocort or because I'm in remission!

Thanks.
jac

 

[SarahBear]

How are you determining that you're in remission? Have all symptoms disappeared?

You haven't been diagnosed, have you? What tests have you had done that have showed nothing?

The pill cam does need to see active disease, yes. However, just because symptoms have disappeared doesn't mean there is no active disease. Unfortunately, the only way to tell for sure is to have the pill cam done - and if you're undiagnosed and have a pill cam done that shows nothing, your doctor may be reluctant to order another when your symptoms return. Do you think this would be a problem?

Did your doctor suggest it?

 

[jac521]

Flare Has Ended Will Pill Cam Be Useful for Detecting inflammation?

I had extreme pain on my left side and nausea for about one month and lost 20lbs. The pain and nausea started to subside and then just left. I am assuming this is remission.

I was first diagnosed with Crohns in Penna. when I was in my early 20's (approx. 1974).

In 2005, a GI found inflammation, crypts and abscesses on biopsies and never told me about it or treated me for it.

Also in 2005, I started having chronic uveitis. Also skin problems that would not heal or go away.

I was diagnosed in 2007 with mild Crohns of the small bowel found on colonoscopy and put on Entocort. I then had an Entercutaneous fistula and then told the disease "was not" mild Crohns, but more severe and he wanted to put me on 6-MP which I refused. A couple of yrs. later the same Dr. did scopes again and said I didn't have Crohns after all, but that I had IBS and told me I no longer required the Entocort and tapered from it. In a few months I started having7-8 BM's a day and moved back to Penna. I was followed by a pcp who understood what I had been through and never doubted that I had Crohns.

Started to go to a Crohns specialist in. Aug. after moving back from Penna.

I had an MRE in Oct. that showed strictures.

I had a colonoscopy and endoscopy that showed diverticulitis and a small benign nodule in the stomach.

The Dr. I was going to since Aug. was supposed to be a Crohns specialist and wouldn't believe prior Drs. Findings unless he saw it for himself. He was rude, arrogant, and had a bad bedside manner and when they gave out my records to another patient and I had been given her records and their reaction when I told the Drs. Assistant was "I don't see what the big deal is", I fired him.

My new Dr. doesn't understand why I would change from going to a Crohns specialist, who is supposed to be "one of the best." He also didn't seem to like it because he said "you have gone to a lot of GI Drs" (like I like changing Drs. - what was I to do when I was constantly being laughed at when I told Drs. I had Crohns, told the diarrhea was caused by "a psychological overlay", even being told I couldn't have Crohns because I was "obese"!!

My new Dr. wants to do the pill cam because of my pain and nausea and wants to see if there is active inflammation. The nausea and pain have left and I don't want to go through another test for nothing.

Every time I have tried to taper the Entocort, I get symptoms. The so called Crohns specialist kept telling me to quit trying to taper it, and keep it at 9 mgs. I have been on that dose for 8 mos., but he didn't seem to think that was a problem.

I could to do a taper of the Entocort and cause a flare as I am just sick, exhausted and depressed from being jerked around by GI Drs???

 

[SarahBear]

Has it been suggested that you stay on the Entocort continually for any other medical problems? Steroids have some possible risks if you stay on them long-term; it's usually discouraged. It sounds like getting a diagnosis so you can treat whatever is going on would be your best option, even if that does mean going off the Entocort to do it.

 

[chatteegrl]

I got diagnosed with crohns about a year ago. They did all kinds of test but the only test that showed my crohns was the camera test. Also the easiest test I did. When my doctor found out it was crohns he put me on entocort. I got to finally come off of it last month. Been doing good since I came off it. But I told you my story to say I know it is another test but you need to let them do it. Also about the entocort I know my doctor told me it was a small dosage so it would have less effect on me and be okay for awhile. I was almost on it a year.. It did make me gain weight though. Keep us posted on what happened.

 

[jac521]

Thanks everyone!

SarahBear - I was prescribed Entocort for IBD only. The Dr. I was going to since August told me to keep taking it as every time I would try to taper it, I would flare. He told me to stop trying to taper it and that I could stay on it long term as long as I wasn't having side effects (this is contrary to what other Drs. Have told me). He was supposed to be a Crohn's specialist. He is no longer my Dr.

I am at the point of being sorry I ever took Entocort. The symptoms I had prior to taking the Entocort were less than each time I was put on it and tapered off of it. After about 4- 5 mos. of being off of it, I would be more sick than before, and have to start it for another 3 mos. This has been a vicious cycle since 2008.

Thanks.
Jac