AAAAAAAHHHHHHHHHHHH!!!!! (Ok I needed that scream!)

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descrapster
Regular Member


Date Joined Jun 2007
Total Posts : 155
   Posted 10/23/2007 11:47 AM (GMT -7)   
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!
Descrapster
Diagnosed with CD June 15, 2007
Currently 2 Fissures and 1 Fistula...YAY! Seton Drain currently in.
8 Pentasa/day
Had to stop Flagyl because of numbness in my toes!
 


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 10/23/2007 12:27 PM (GMT -7)   

I understand how you are feeling. My Dr is great but his staff is awful. And once he confused me with another patient on remicade. I get frustrated cause he tells me call the office with any questions then the staff seems upset that I am calling.

 

I have thought about changing Doctors too but hate to go through that!

 

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On Azathioprine (generic Imuran), Pentasa, & ENTOCORT

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, waiting on a EMG nerve test right now...


rubixqueen24
Regular Member


Date Joined Dec 2004
Total Posts : 162
   Posted 10/23/2007 12:39 PM (GMT -7)   
I had a "crappy" doc for 5 years and didn't know it, just thought I was a hopeless case. I moved to Las Vegas and had a doc that told me my other doc was stupid and got me thinking that not all docs are created equal. Moved back to WA and was getting remicade (through old doc) and was talking to a guy next to me who liked his GI doc so I switched (my old doc is in same office kinda weird). Doing really well with new doc. Sometimes you just need to switch unfortunatly.

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 10/23/2007 1:16 PM (GMT -7)   
Why specifically don't your doctors want you on remicade during pregnancy? I don't know a lot about this, but there are tons of posters on this site who have used Remicade during pregnancy. It may not be an all or nothing situation.
Belleenstein:

30+ years living with Crohn's.


descrapster
Regular Member


Date Joined Jun 2007
Total Posts : 155
   Posted 10/23/2007 1:28 PM (GMT -7)   
A lot of people have been pregnant and still had remicade but my doctor does not agree with it because there is no studies to show what long term effects it can have on the baby. She is head strong on her opinion of no babies. I am worried about not knowing the long term effects as well but there are so many women who have had perfectly healthy babies. My family is totally against the Remicade and me getting pregnant. They have argued with me like you wouldn't believe! I am only 25 but my Husband just turned 41 today. What I don't want is to wait 2-3 years until I am done with Remicade(god willing) and then try to get pregnant and discover that there is a problem and I can't or it takes me 2-3 more years to get pregnant. It is such a tough decision. I just want my butt to get better because that is the source of all my pain!
Descrapster
Diagnosed with CD June 15, 2007
Currently 2 Fissures and 1 Fistula...YAY! Seton Drain currently in.
8 Pentasa/day
Had to stop Flagyl because of numbness in my toes!
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/23/2007 1:43 PM (GMT -7)   
I understand how frustrating it is when your doc forgets your case. My doc is great but he often refers to me having "colitis" and I have to remind him its crohns. Then he says "i just use that as a general term for inflamation." He could be telling the truth but I think he is just covering his own arse.
25 Year old married female.  Diagnosed w/ CD 2 years ago, IBS for over 10 years before that, which was probably the CD.
 
I started getting a ton of junkmail after putting my myspace profile link on here.  Im taking it off but if you want to contact me just email me and Ill give you a link to my myspace.  Sorry!


KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 10/23/2007 5:11 PM (GMT -7)   
Seems like they would understand us a little bit better, I have the same problem all the time. I've been seeing a PA for 3 months because my GI has been away on vacation. She asks me questions I should be asking her and I get so aggravated...I got diagnosed 8 months ago and haven't seen much improvement since, I'm in the process of finding a new doctor so I know exactly how you feel. I don't take my sickness lightly because I can't stop my life at anytime with children so I have got to do something to feel better. And most of the time I feel like they don't care at all what I have to say so poop on them!! Good luck!
DX: Crohns in March 2007
Meds: Remicade


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/23/2007 5:30 PM (GMT -7)   
Hi It should not take 2 or 3 years to get rid of your fistula if you are on Rem. now consider how long it would take with a plug. My fistula healed in about 6 to 7 weeks on Rem. so maybe that is why she is pushing you on the Rem. Take the chance and call if you want to go on it. I can understand why your family thinks that way. They probably would change there mind once your Dr. gives you the go ahead. Sometimes it is worth waiting for bettere health then she how things go for preg. Wishing you the Best. lol gail
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