Having the fistula, is a whole new thing for us, and I feel like I'm starting from scratch again trying to understand this. If it was just inflammation, I'd feel fairly positive about the med's correcting the problem, and maybe get back in remission for hopefully many years.
My big problem right now, is I can't seem to get a realistic grasp on just how complicated this fistula can get. From the way I understand it, with the fistula there, isn't there a good chance that it can keep filling with waste and create another abscess? This could go on forever. It would be an endless cycle. They haven't mentioned surgery yet, but is that the only way to really deal with these.
The one thing about our GI and the clinic we go to is, they're very cautious when giving a prognosis, have been from day one. That just seems to be part of their approach. It's always wait and see type of answers. Being the analytical type that I am, it drives me absolutely nuts! Even if they gave me some sort of percentage, or some concrete opinion, even if it wasn't good news, at least you know.
Thank-You Gail (Nanners).
I appreciate your imput very much. I know your also quite correct. One does have to be patient with this disease, and hopeful. The unknown is tough. I really try not to let my fear show around Holly. In fact I asked her yesterday how she feels about the outlook of this, and she said she trusts the Doctors. On the way home with my 12yr. old son, I said, it's just so unfair, and that we should be out in the malls, getting ready for Christmas like everyone else. He said, "not everyone else Dad, there's alot of people in that Hospital that aren't getting ready for Christmas, and are way worse off than Holly"....Kids these days.
First of all, I'm very sorry for what you're going through right now, and I wish you all the luck for recovery. As you can see from my post, my daughter is in the middle of this right now as well. I was hoping to hear from some that have had success with treatment of this sort of thing. This doesn't sound too promising. How do the Dr.'s feel about the liklihood of the fistula closing? Did each abscess have a fistula, or was there only one?
Once again, good luck with this, and Thank-You for sharing you experience.
Hello, to 73monte, i believe they said it was just one fistula. i had one very large abscess bulging out of my abdomen that had the fistula attached to it. the abscess drained in 3 weeks and looked good, so they put it in the smaller abscess, which is a little lower and then the big one came back with a vengeance.
i think because the fistula wasnt healed all the way , it filled the abscess back up...but that was a chance they had to take i guess. not everyone gets multiple abscesses. he even suggested putting two catheters on me....and i replyed something not very nice.LOL
i just have to keep this catheter on, and do more remicade...i only did two so far and others have had success with the remicade closing off fistulas. since this was my first real full blown flare-up, i probably waited to long to go in(also because i have no insurance)......i didnt know how bad it really was. i guess we all just hope and pray for each other....and thanks for sharing your stories.
gachrons- i think i will probably have to have that surgery soon if the next remicade treatment doesnt work. they are trying to avoid it because they know i already have a mountain of bills i cant pay, but i may have no choice. the antibiotics are giving me bad side effects, the prednisone sucks and as i said, i only had two remicade treatments so far....i just have to be patient. i just hate this stupid catheter. i want to burn it. it has been over a month and i want to go out, and i want to take a real shower and be able to sleep in whatever position i want. anyhow, enough whining. thanks for your reply and i hope all goes well for you. oh, by the way, what kind of B-12 do you take? do you mean pills or injections?
Thanks very much for posting. You didn't freak me out, but I appreciate the concern over that. I have been looking for some imput from people like yourself that have gone through similar experiences with this and what the success rate is. I'm very glad you were able to share yours. You've come to the right place for support. You'll find many compassionate individuals here. We all sometimes lose our perspective and rant a little, but usually some of the veteran members here will give you a good dose of common sense to help you get your thinking straight again. Good Luck.