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Pill Cam Accuracy

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Posted 5/6/2010 1:29 AM (GMT 0)
Background

I have had many tests over the last 6 months cummulating in a colonoscopy, biopsy and CD diagnosis. I have been going back and forth to the GI and last time I was in the middle of a flare. Pain gas, .... Anyhow she said I might have UC in the small bowel. She said the only way to be sure is a pill cam.

Questions

1) Do you think it is odd that she was surprised I was not feeling better after only 3 months on Pentassa? (My symptons are small compared to many here). I ask cause it seems like way too short of a time to determine anything.

2) I have spent thousands of dollars on tests so far and this one is the most money yet. I will pay gladly the $5k if I am am sure they will actually tell me what is wrong and what to do about it. Can anyone let me know their experience with pill cams please.

Thanks as always!!

David

 

Posted 5/6/2010 2:29 AM (GMT 0)

HI, 

 This is my experience with pill cams...I had one and it got caught. It caught where I had  previous surgery and my small intestine was narrow. Was in for 5 days!!  I was shceduled to have surgery to get it out and ... then, it came out ..whew!

My GI always goes on and on about pill cams being the only true way to see inside the area they need to. I was scheduled for another one not to long ago ...however, Dr. said that he was going to "place" it down in the small intestines when I was out for and endoscopy. He thought that it would keep it from getting caught...who knows?  They were going to do both at the same time. a 2fer!  But, needless to say I didn't get it done because I ended up in E.R. with another issue..anyways, it's pretty painless and it does work if it doesn't get stuck!

Good Luck!

Posted 5/6/2010 12:36 PM (GMT 0)

you can't have UC in the small bowel. UC by definition is confined to the colon.

The pill cam is a very good diagnostic tool, but it will onyl show Crohns ulceration and inflammaytion in the small intestine if you have it there. You note that scope and biopsies previously confirmed Crohns . . . so the pill cam would mostly be used to show extent of disease (or not) in the GI tract above where the colonoscopy can reach.

Posted 5/6/2010 1:22 PM (GMT 0)
I'm pretty much with Mike, if only for the cost. 5K? Wow, what is the mark up on that one? (Canadian here, so don't mind my being totally dumb founded.)

It seems you already have a diagnosis. It's hard to visualize the small intestine via cat scan, etc. because it over laps itself so much. In this way the pillcam does prove useful.

That being said, you know you have it. If it get's really bad, blocked, it will show up on a small bowel follow through CT. I hope for your sake it wont.

As for the Pentasa, I was on it for 5 years. It really didn't do that much for me, but I kept taking it because I couldn't tolerate the immune suppressants and the biologicals were not out yet.

If you don't find it's helping you, you may want to move on to other drugs, which will cost more (unless you choose steroids), so you may want to save your money for that.

BTW, I have seen posts that speak of financial assistance for Remicade (and possibly Humira) here on these threads.

Wishing you a speedy return to health :)
Posted 5/6/2010 1:30 PM (GMT 0)
I take the sister med to Pentasa called Asacol. I didn't respond well to Pentasa, but have been successfully in remission for the past 5 years on Asacol. Maybe a switch up in meds might work for you.

And as for the pillcam it is my understanding that this is one of the best tests to detect Crohns in the small bowel. This test shows the small intestine where the scopes can't reach. And MikeB is correct you cannot have UC in the small intestine.

Good luck!
Posted 5/10/2010 3:07 AM (GMT 0)
Thank you for the encouragement and insight.

I did not know that or expect that after 3 months it would be normal to try other drugs. Only here do i feel I can get an answer to a quaetion like that , and trust the answer.

I must have misunderstood the GI when I referenced UC in the small bowel. I have been trying to read/learn about CD and have not been reading about UC. I am going in 2 weeks for the pill cam and I will get new meds then.

I have expected a complete answer so many times and not gotten one that I do not want to raise my hopes for this test. I will update when I get the results in the next weeks.

Again thanks

David
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