I'm hoping to bounce my story off people who are familiar with IBD (and specifically Crohn's). I have a bit of an odd-ball story and am currently left sratching my head.
For some time I've been going through a series of high fever spikes (102-104) for a few days a month or persistent low "fevers" (99-100) for a couple weeks at a time. Standard bloodwork by my PCP showed (while I was very sick) elevated inflammation, positive rheumatoid factor (but just outside of normal), and low platelets (ongoing problem I've had for years). Repeated bloodwork was normal with the exception of the plateletes. However, the last few months (THANK GOODNESS!) I have not had any fevers. And no other symptoms have accompanied the fevers other than I tended to get quite ill after a bout of fevers (throat infection, sinus infection, etc).
My PCP initially referred me to a rheumatologist...but there was a 4 month wait. In the mean time she ordered a CT scan. I was SHOCKED to find that there was inflammation/thickening in my small bowel as I have always had a digestive system of steel. After the results came back I realized my timing was very poor on when I decided to go in for the CT scan as it was about a week after I had a bout with a nasty stomach bug (yay for kids in daycare!). Although I was referred to a GI doctor I was pretty confident that after an appointment or two we would come to find out all this was a false alarm.
The GI doctor ordered and x-ray with contrast, and numerous other bloodwork including a Prometheus test. I was reassured when the radiologist commented to me that everything looked a-okay on the x-ray. Yesterday was supposed to have been my follow-up, however, it was cancelled due to some issue with the doctor. Rather annoyed that the next appointment was not being rescheduled for another month I asked to be called to discuss the labs (unacceptable in my opinion to make a patient wait 2 MONTHS for a follow-up for lab work).
The nurse who called me back confirmed that the x-ray with contrast looked fine.....................but then dropped the bomb on me that the Prometheus test came back positive with a "pattern the indicates you have Crohn's." So here I am left with extreme frustration and confusion about this whole thing, especially after doing research and discovering the high level of false positives (and negatives) for the Prometheus test.
I can't help but feel in the absense of any other GI symptoms and a abnormal CT scan that could be explained away by a GI bug (and subsequently confirmed by an x-ray) that doing the Prometheus test was not appropriate. Because from the small amount of research that I've done we are now going to be heading into rather invasive testing.....which seems all for naught considering I have no symptoms that point to having IBD of some kind.
However, perhaps I am in denial about this whole process. Am I missing something major here? What are the chances this is going to play out and I get diagnosed with Crohn's at the end of the day? This is not disease that should be taken lightly. If they do not find anything else to support Crohn's is the doctor going to still fall back on this Prometheus test being positive for trying to push treatment or a diagnosis?
Another issue I have is that I severely disliked the doctor that I saw. He was, quite frankly, the essence of a pompous you know what and I've never had a doctor speak so condescendingly to me. The only reason I even scheduled a follow-up with him is because I (incorrectly) assumed I'd have one more appointment and be done with him. So any advice on sticking with him for the time being or seeking another doctor STAT would be greatly appreciated.
For some time I've been going through a series of high fever spikes (102-104) for a few days a month or persistent low "fevers" (99-100) for a couple weeks at a time. Standard bloodwork by my PCP showed (while I was very sick) elevated inflammation, positive rheumatoid factor (but just outside of normal), and low platelets (ongoing problem I've had for years). Repeated bloodwork was normal with the exception of the plateletes. However, the last few months (THANK GOODNESS!) I have not had any fevers. And no other symptoms have accompanied the fevers other than I tended to get quite ill after a bout of fevers (throat infection, sinus infection, etc).
My PCP initially referred me to a rheumatologist...but there was a 4 month wait. In the mean time she ordered a CT scan. I was SHOCKED to find that there was inflammation/thickening in my small bowel as I have always had a digestive system of steel. After the results came back I realized my timing was very poor on when I decided to go in for the CT scan as it was about a week after I had a bout with a nasty stomach bug (yay for kids in daycare!). Although I was referred to a GI doctor I was pretty confident that after an appointment or two we would come to find out all this was a false alarm.
The GI doctor ordered and x-ray with contrast, and numerous other bloodwork including a Prometheus test. I was reassured when the radiologist commented to me that everything looked a-okay on the x-ray. Yesterday was supposed to have been my follow-up, however, it was cancelled due to some issue with the doctor. Rather annoyed that the next appointment was not being rescheduled for another month I asked to be called to discuss the labs (unacceptable in my opinion to make a patient wait 2 MONTHS for a follow-up for lab work).
The nurse who called me back confirmed that the x-ray with contrast looked fine.....................but then dropped the bomb on me that the Prometheus test came back positive with a "pattern the indicates you have Crohn's." So here I am left with extreme frustration and confusion about this whole thing, especially after doing research and discovering the high level of false positives (and negatives) for the Prometheus test.
I can't help but feel in the absense of any other GI symptoms and a abnormal CT scan that could be explained away by a GI bug (and subsequently confirmed by an x-ray) that doing the Prometheus test was not appropriate. Because from the small amount of research that I've done we are now going to be heading into rather invasive testing.....which seems all for naught considering I have no symptoms that point to having IBD of some kind.
However, perhaps I am in denial about this whole process. Am I missing something major here? What are the chances this is going to play out and I get diagnosed with Crohn's at the end of the day? This is not disease that should be taken lightly. If they do not find anything else to support Crohn's is the doctor going to still fall back on this Prometheus test being positive for trying to push treatment or a diagnosis?
Another issue I have is that I severely disliked the doctor that I saw. He was, quite frankly, the essence of a pompous you know what and I've never had a doctor speak so condescendingly to me. The only reason I even scheduled a follow-up with him is because I (incorrectly) assumed I'd have one more appointment and be done with him. So any advice on sticking with him for the time being or seeking another doctor STAT would be greatly appreciated.
