I swear I trust what I research far more than what these darn doctors tell me! I sent an e-mail to my doctor regarding my fistula. I just went through a flare that I controlled within a week with ensures and no meds(thank God!) I sent her an e-mail last week saying that I was not doing well and she suggested a short courses with steroids. She also told me that she wanted to call me that afternoon. Well ofcourse I get no phone call and I called the office twice and left 2 messages and nothing. Yesterday I e-mailed her again letting her know that it seemed that I was getting out of my flare and that I was concerned about putting in a fistula plug since I am still leaking significantly and that I can't get the Remicade pre-approved. I told her that I was scared of getting another abscess or fistula with no medication to help it heal so if she suggested anything else I could take. I also mentioned that I am leaving in December for 3 weeks to North Carolina and that if she would suggest that I take any extra meds with me just in case I go into a flare as I normally do when I go away. She replied today and told me that I need to call the Remicade company to see if I qualify for their assistance program and what other medication I was referring to because I am taking "Lialda" currently and was I referring to antibiotics? Well first of all she did not answer my question regarding the plug. Telling me to call the Remicade company is not what I needed. She knows I probably won't qualify and I need to know of any other options. When I read Lialda my head wanted to explode because I don't take Lialda, I take Pentasa! Ok, I know anyone can make a mistake but piick up my chart before you make an assumptions! This was the same doctor who told me fish oil does absolutely nothing to help with Crohn's!! There are not a lot of options where I live with Doctors and I am starting to consider going back to Miami. Then i think of the insanity if anything ever happens as an emergency or if I have to have surgery. It's a 2 hour drive home. I can't get an appointment with my GI for atleast another month and I can't have that. I have a situation that I can go from bad to worse in a day! Once again............ AAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHH!! What do I do? Do I go for the plug with no remicade? I also want to have a baby and I can't keep putting it off but can I deal with a pregnancy and this fistula and fissures? My doctors don't want me pregnant and on remicade so where does that put me? Doctors are supposed to make things better not aggravate you! =(
Ok, I think I am done for now. Thanks for letting me rant!
Diagnosed with CD June 15, 2007
Currently 2 Fissures and 1 Fistula...YAY! Seton Drain currently in.
Had to stop Flagyl because of numbness in my toes!