Off all IBD meds due to Prometheus Testing?

The doctor has taken me off my Asacol and Pentasa because the test came back negative. He also said he's waiting to see if I get a flare because of coming off them. Does anyone know how accurate these tests are?

he said that the test came back saying that I did not have any IBD. He also said that this isn't the be all end all of testing and he was interested to see what would happen. Finally he said that he scheduled a scope for October but if things flare (and he thinks it's probable), he'll do it earlier to get accurate results.

How were you initially diagnosed? Colonoscopy? As far as I know, a colonscopy with biopsies is way more accurate than the prometheus test.

"Future flares get harder and harder to treat "

 
"You should stay on the meds that put you into remission because if you flare again, these same meds might not work and then you have to go up the med ladder to more dangerous drugs."

not always true - I got out of a 3 month flare with 0 meds, just diet changes -

"Is there a way of getting a second opinion?"

yes, you absolutely should be getting one - 

Post Edited (soystud) : 7/30/2013 6:11:39 PM (GMT-6)

he is my new doctor. my mom truly trusts his opinion. i'm not completely sold on it, but i'm not dumb either. i'm not going to wait until I'm in a full blown flare. if i have ANY bleeding, he will get a phone call immediately. I specifically told him that.

He says that there's no real evidence of the diagnosis in the notes from my old doctor (which is true, however the doctor always said things that never ended up in his notes) and that he cannot justify treating me with medications that could have side effects if he cannot prove that I have the disease.

I don't know, I'm not him.

The Cleveland Clinic, a top GI institution, does not request or review IBD reports from the Prometheus Labs. They don't feel they are accurate. My surgeon also dissed their testing back in the early 2000s when I faced surgery. According to him, they used faulty research; my surgeon is a top researcher.

Sue

I guess I have to ask again, if this doctor doesn't have any evidence that you had UC, then what does he think you had? I also have to point out something you said in an earlier post, "if things flare (and he thinks it's probable)". This just sounds incredibley stupid to me. He himself believes that if he takes you off the meds then you will probably flare.

Too many people fall for the likeable doctor you can trust. My exwife was an RN and once worked for this private practice doctor, a good ole guy. All of his patients adored him, loved him, and trusted his every word. My exwife was absolutely appalled by his lack of knowledge and outdated sterilization techniques which could have closed the office down. He is the absolute worst doctor she had ever worked for.

If your original dr never put any notes actually indicating evidence of disease and you have never had another dr verify IBD it would be remiss of your current dr to just continue meds just "because", ESP with all your other compounding issues. These drugs are hard on other organs. Is this dr going to do a scope?

Post Edited (PathogenKiller) : 7/31/2013 2:35:28 PM (GMT-6)

how long does it take for mesalamine to leave the system? I already have terrible D and don't know whether it's stress related or the start of a flare.

I understand that it's not the best advice, but my mother was sold on him and he's the only GI in town... the nearest alternative GI is 3 and a half hours away. I'm kind of stuck with him. I honestly don't know if I'm actually sick right now or it's the placebo effect. only time will tell. I already have said that if I start bleeding, I'm going straight in to the office.

As far as the biopsy results, they were all recorded as normal (from 6th grade til now), but that was not how they were explained to my mom and I when we were in the doctor's office.

Regarding the tests accuracy, Prometheus claims it to be 92% accurate (www.prnewswire.com/news-releases/prometheus-launches-prometheusr-ibd-serology-7-55900847.html). Of course, how they came to that number...

I had the Prometheus test done in 2009 and it came back positive for IBD leaning toward UC. This is strange though, since I have never had any inflammation in my colon; rather it has only ever been in my terminal ileum and stomach. So personally, I don't really put my faith in the results.

Speaking of doctors: Back when I had that test done, my GI at the time did a colonoscopy because I was having symptoms of a flare. The colonoscopy came back clean, so (of course!) my GI said he didn't think I had Crohn's at all, even though he had my previous GI's notes with all the information from the pill cam and colonoscopy (including biopsies) that diagnosed me. In his opinion, because there were no granulomas, it must have been something else (because you MUST have granulomas to have Crohn's). Ugh. Thank goodness I was relatively well during the time I lived in his area.

Personally, I would try to find a GI *you* trust and who you think is doing what's best for you, not just someone who your mom trusts. Your mom doesn't know everything going on with you and she can't make the best decisions for you when it comes to your health. If you're stuck with this one (are you sure he's the only GI in 3.5 hours?) then be open and honest, make lists of things you want to talk about him with, and make sure he sees you as an adult and treats you as an adult.

I hope everything works out. You can and will get through this.

It's the original diagnosis biopsy results of your colon that you need to get. Not the report from the doctor...from the biopsy results.

I see you mentioned they're offline...a hard copy is good..they should be able to send it to you.

But...regarding the meds...don't wait till you bleed now that you're off them. If you're having any stool changes such as a period of constipation then looser stools...either of which continues...go see the doctor.

Hope you stay well,
q