Heya TMos.. No worries..
well I don't necessarily have a "firm" diagnosis.. as far as what all exactly I do have..
However, my CR Surgeon did the special Exagen Gene test. My labs came back to initially confirm the IBD. in a normaly person the range is supposed to be 0.00 I think.. and w/IBD is anything over. My index was 2.46 = Consistent w/IBD. then it took a while for the CD/UC differential to come in. But the day of my surgery my CR Surgeon told me and my mom that i did have Crohns. The 2nd labs show more to be UC for the gene pull test. But my CR Surgeon said I may have Crohns Colitis..
The main basis i think is that they also take into account the way the disease affects your body. UC is only in the large intestine, while CD is patchy.. anywhere from your mouth to the other..
I happen to get the apthous ulcers as well on my tongue. Have gotten them for a while and it's a Crohn's thing. In 2009 I went a while where I couldn't keep food down.. that led to my PCP giving me Rantidine for ulcers in my tummy, then to Omeprazole 40mg. I just figured the ulcers in my mouth were coming from my tummy.. and my Primary Care Phys didn't know to look for CD so I was given Lidocane mouth rinse so i could eat.. those buggers are painful!
So, my hx is consistent with Crohns. And have a family hx of colon cancer so they are doing all the needed tests for that too. My dad's dad died of colon ca (23yrs he had it), my mom's grandma died of colon cancer, and my moms aunt also, .. anywho.. all my grandparents have passed, as well as my father. So, even though i look normal and healthy.. i have a family hx of illnesses.. (darn the luck..) but it's ok.
And the lump which showed up in Feb of 2010 was thought to be a lymph node.. but grew out of control b/c it was a mass/abscess.. eventual fistula.. which wasn't "really" treated until Aug 2010..
since then my labs have been weird.. but i've never had so many darn blood tests and other stuff too..
Have since had an ultrasound of my thyroid.. the Fri b4 last I think.. found a nodule.. but it's small
Also, had my Primary Care Phys do some lab where i have a positive ANA. Healthy people have a negative ANA.. so I'm going to see a Rheumatologist on the 2nd to see if it's just the Crohn's, or if it Lupus as well, or Rheumatoid Arthritis..
My GI did an EGD last Tues.. and took biopsies. Found some erosion in my stomach somewhere but they only did labs for cancer. So, that's rulled out - from those samples anyways..
Must say.. it's been a wild ride the past few mos! One thing after another. But this forum has given me so much strength to push through i do believe it has been my saving grace! Everyone here is so open and understanding.. ! it's great!
As for the drugs to give me.. well i've been on a WHOLE bunch over the past few months. had a 30day Cipro/Flagyl, 2000mg Sulfasalazine (made me feel worse.. think it was the sulfa in the drug) so switched me to Apriso 1500mg/day. I'm not sure yet how they determine everything they put you on, but i think they try to put you on as less as possible.. and seems to just be a hit and miss type of thing right now. I'm still learning though. I know the Apriso is a 5-asa.. and there are some other ones that are given if the disease is worse.. so depends on the severity as well. And how your body handles it. My tummy gets really swollen now. And i just deal with it. But just finished another round of Xifaxin 550mg 2x/day 10days for that. That one is expensive so they are hesitant about prescribing it.
I wish i had better insight for you! If you ever want to send me a message i'm open to that too.
I'm always here.. or just a click away.. nothing too out there to me anymore! lol.. i'm rolling with it these days..