More update-y goodness!
So I've been on Lialda for almost three months now.
Absolutely zero side effects.
For one month the fistula kinda sealed up, but then it ruptured again and now it hasn't gone over 3 days without some kind of drainage coming out.
I have felt less fatigued on the Lialda.
My doctor says it is because Lialda treats the Crohn's disease, so maybe my body isn't fighting as hard against itself.
Also, I got the results back from my Prometheus test and apparently I do not have any of the genetic markers for Crohn's Disease. That is not much of a shocker considering I'm 4th generation multi ethnic and I doubt they could find someone with a genetic make up similar to mine except my kin and none of them have Crohn's.
My GI said the prometheus test results were probably another reason why the HMO refused to approve my Remicade.
In the meantime, I went to see a general surgeon and he poked around everywhere quite thoroughly and looked at the xrays from my fistulotomy. He said that the fistula ascends to high up, almost to the top of the rectum and that if he cuts this one out, 10 more will come in its place. Therefore, surgery is not an option for me.
Once again, my GI and I are going to try for Remicade. She sent out the referral on Friday. If I hear back soon, I'll be approved. If I don't hear back, I'm not approved. I was feeling really optimistic and glad that I was finally going to get this crazy drug, but then this happened.
My department is reducing me to part time for the Fall semester.
This means that my contract will end in late June and not resume until September.
I will be without insurance, unless I go the cobra route, for July and August. Bye bye, my GI. Bye bye, my remicade? We shall see what happens.
As a result of all this, I don't know what to hope for anymore.
If I'm not approved, then I won't have to lose it in July or go broke trying to pay for it.
If I am approved, then I take it, but I may have to stop it and once you stop it, that's it, right?
Somebody tell me the good news.
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
My HMO refused the Remicade and now I could be going on Lialda or sulfa? blah