OMG, I'm about to go crazy!

[anyone]

I had my pill cam yesterday. I was told the nurse would call today and tell me if it passes. Well the nurse called and said the pill passes and everything looked perfectly normal. She said there is no sign of inflammation and that it appeared that I don't have Chron's at all. I thought a doctor should be reviewing this stuff?

Hmm this is interesting. I had an MRI two weeks ago that showed I concentric wall thinkening, mild to moderate luminal narrowing and mural hyperenhancement involving the terminal ileum, extending to the level of the ileocecal valve. My CRP was 58.2 and my ESR was 41. My blood tests have also showed bandemia of 10-15 percent. Neutrophils of 88.4, were 45-75 was normal. Low Lymphocytes 7.3, were 20-45 is normal. High Glucose of 145. Also, low grade fever.

I have been taking Prednisone for the past two weeks.

Can an MRI have this much false positives? You guys have any ideas were I could go from here?

 

[Jennifer]

What other tests have you had done?

I'd make an appointment with your GI and go over the results with them and ask about the MRI results in comparison.

 

[Gculk]

Woah. Prednisone for two weeks before pill cam? How have you been feeling recently? Having any improvements?

It could be that the prednisone has eliminated the ACTIVE disease, (you know, exactly what it's supposed to do). Gah, you're in a shit of a spot, no answer and a possible answer to why there is no answer.

I don't know why doctors do this.

 

[Cat-a-Tonic]

I agree with Nathan, pred can heal and mask symptoms wonderfully which is not good if you're looking for signs of illness on tests - in fact, my GI took me off pred and all other meds before I had my pill cam. So I wasn't feeling great when I had mine done, and if it's any consolation, even on no meds my pill cam didn't find anything either. It's a good test to have but it's not the end-all be-all. I am with Crabby, talk to your GI (sometimes nurses get things wrong or give out misinformation) and ask specific questions regarding what the MRI found and whether pred would mask those things. I don't think things like intestinal wall thickening would be seen on the pill cam in the first place. I don't doubt you've got thickening and I would trust the MRI results over pill cam plus pred. Perhaps you could come off pred and convince your GI to let you have a do-over of the pill cam once you've been off it for awhile?

 

[anyone]

I don't know. I have been on 60 MG of Pred for over a week. I was on 40 MG before that. I don't feel that particularly great to be honest. If its perfectly normal now, I should be feeling great right? Maybe its something else causing it.

Its funny that my MRI said consistent with IBD and then when the medication does what it supposed to do, now I probably do not have it. I would be happy to not have it. I would be thrilled if I was feeling great right now. Unfortunately, I don't feel great and my weight is down to 131 at 5/9.

As for the tests, I have had Endiscopy, Celiacs, H Pylori tests, Chest Xrays x3, CT scan, MRI, Colonoscopy, Pill Cam, and Blood Tests.

 

[Jennifer]

Small bowel follow through/barium swallow maybe? Should show similar findings that the MRI did. Barium enemas aren't fun but if a small bowel series doesn't find it then they go lower with the barium.

Them be some high doses of Prednisone too. Might be some scar tissue lurking somewhere even if its on the outer portion of the intestine where the pillcam would not see.

 

[Gculk]

anyone- Not quite. Scar tissue is less functional than regular tissue, or non functional. As well, if there is narrowing that could cause irregularities as well.

Further, Crohn's inflammation (from what I have read, correct me if I am wrong), can sometimes be deeper seated and not be readily evident superficially.

Also, if you are feeling 'better' but not perfect, on the prednisone, the inflammation could be gone and all that remains is damage that is healing, leading to you feeling bad still, but getting better, and no active disease being evident.

 

[anyone]

I'm inclined to believe the MRI better then a pill cam. I'm wondering how a pill cam can measure the narrowing and I do agree that the inflamation might be beat down after being on 60 MG of Prednisone. I asked the doctor if he should do the pill cam before the Prednisone, I had already been on it about a week when I asked him this question. I think his nurse replied that there is always a sign if the patient has Chron's.

I'm going to ask to be taken off the Prednisone ASAP. I really don't need to have side effects from a drug that I don't need. Is two weeks to long to stop cold turkey? I'm not going to do this without my doctors advice obviously.

 

[fosterschick]

hi im with the others, here if they are doing tests (if the doctor is any good ) they like you not to be taking pred well before anytests !!! but on the otherhand how much more evidence do they need the mri seamed pretty conclusive and hopefully the steriods will help you feel better soon , hugs xxx

 

[anyone]

Thank you all for your support! I just find this frustrating. I have been suffering for 6 months. I would rather have waited longer and got some definitive answers then to be given a temperary solution to a life long problem. Now it seems like I just have to repeat this same issues all over again at a later date. I would much rather be going into remission and maintaining it with meds and a good diet. If I have these same problems again, I'm just going to make an appointment in Seattle with a person who has the proper scope that can actually sample the effected area.

My insurance has Ok'd the prometheus blood panel for the second time. The first time they did it they forgot to check the IBD box. LOL. Will this test show anything if the inflammation is gone?

I'm starting to feel better. The pain in my abdomen is not going away. I feel very full after eating a little bit of food. So, I'm trying to eat very little amounts often through the day. But this is better then when I could hardly eat anything at all. So, progress is being made. I really need to get ride of this pain and fullness before I can start gaining some of this weight back. But I think I'm going on the right track. How long should someone be on 60 MG of Prednisone? Should I start talking my doctor about getting off the stuff? Sorry for all of the questions.

 

[Jennifer]

If you've been taking Prednisone for over 10 days then you do need to wean off of them. Bad things happen if you don't. Gotta watch out for this: http://www.crohnsforum.com/wiki/Adrenal-Insufficiency-Crisis

As far as how long to take them, your doctor basis that off of tests (at least blood work) and your symptoms.