Hi all. I haven't posted much, mainly replied to a few threads. But I just wanted some opinions on my situation. Here is the history:
I was diagnosed with Crohn's in December 2010. In July 2010 I started having D. It lasted over a week and started having bright red blood in it. I saw an urgent care doc and got a bunch of tests and he put me on antibiotics just in case. I also had some moles removed in August and one got infected so I was on antibiotics for that also. In September, I started having a lot of pain in my vaginal region and developed a large lump and felt a ton of pressure. I went to the ER and they said I had a yeast infection! I probably did from the antibiotics, but the lump was NOT yeast. In September/October I saw my PCP and a gyno, neither of whom could figure out what was going on. My PCP thought it was a cyst and the gyno thought I had herpes! I did another round of antibiotics.
In the meantime, I started seeing a GI doc for the D and got a colonoscopy, a bunch of blood tests, etc. In October I started passing gas and feces through my V. Once the colonoscopy results came back saying possible Crohn's (only in my descending colon so far), I figured out that what I have is a fistula. So I tell my GI doc and tell him I want it fixed and he wants to "wait and see." I tried Lialda and Asacol, both of which made me extremely sick. After a week and half of Lialda in January I ended up the ER. In February/March I had an endoscopy and a small bowel follow through.
Since neither Lialda nor Asacol worked for me, my GI decided to try Welchol since I have no gall bladder. It has made a HUGE difference and I rarely have D anymore. But my main issue now is that my fistula is always bothering me. I have constant discharge, some days better than others. Sometimes it "flares up" and I can feel a lump (abscess) forming and pressure, and then I get more discharge. Almost always during these times I end up with a bladder infection due to the discharge. It's just really uncomfortable. I asked my GI if I could try Remicade since it helps to heal fistulas but he told me it causes cancer and death. He wanted me to see a specialist. It took him THREE months to finally get everything squared away and then my insurance denied the specialist. My PCP was NOT happy that it had taken so long and got me a referral to a colo/rectal surgeon within a few days after that.
I saw the colo/rectal surgeon last week and he also did not understand why it had taken me a YEAR to get to him (I've had the fistula since last October even though I wasn't officially diagnosed until December). So he tells me that he wants to do an exam under anesthesia to get a really good look at the fistula and the surrounding tissue. If the tissue is healthy enough, he can do a flap procedure. If it's not, he wants to give me a stoma for three to six months for the tissue to heal and then do the procedure.
I feel that this is a drastic measure given that I haven't even tried other things to get rid of it. While I've done many rounds of antibiotics for other things, I haven't tried the cipro/flagyl combo that sometimes helps fistulas. Whenever I do antibiotics for other issues (mainly bladder infections) my discharge is always diminished and my fistula feels better. Also, I'd really like to try Remicade first before I resort to a stoma, but the surgeon said he will leave the meds up to my GI (the "wait and see" guy) but that he MIGHT recommend Remicade after seeing the fistula and tissue.
I guess I just want people's feedback on what I should do at this point. I'd really like a new GI. I don't like my doctor AT ALL. I have an HMO so it would probably take some time to get a new one, and then s/he would have to review my files (assuming I could get my GI to give me the files), but I'm willing to do all that to get a better doctor. I'm afraid that this is just going to delay everything even further, though.
Also, if the surgeon insists on a stoma, should I refuse and ask for Remicade first? I'm sure that since I have HMO getting Remicade approved might be difficult, but I think I have a good case for it given that it's been so long. I'd much rather try that first since, while I don't mind surgery, I'm afraid that if I ever flare again, I'll just develop another fistula. I can't just keep having flap procedures every time.
I'm just really confused and I feel like my doctors aren't really listening to what I want (except my PCP, but she can only do so much). Thanks for any opinions/advice you can give (and sorry it's so long).