Here we go again..

[annak87]

Well..my current flare with a perianal abscess and fistula began in October. Had the abscess drained and a second draining seton placed in the fistula. The last surgery had just been this past February. I haven't really had a time where I've felt myself since October and I've been on and off Cipro and Flagyl since. November marked three years since I've began Remicade. Isn't that supposed to close up the fistula? :ymad:

After my Remi infusion last week I had a call from my GI nurse. I don't know if the infusion nurses called and said I looked terrible or what but she called to see what was going on. GI put me back on Cipro/Flagyl for a month.

Today I called the GI nurse to ask for a prescription for pain meds and it turned into a huge Q&A about everything that's been going on. Two million calls later, I'm in contact with the surgeon and getting set up for a pelvic MRI on Wednesday. This is how it always goes. Next will be the exam under anesthesia. I'm just so sick of this never ending cycle of antibiotics, MRIs, surgery. Has Remicade not worked for anyone else with fistulas? Where did you go from there?

Thanks everyone.

 

[Jennifer]

From what I've read, 6MP is also used to help with fistulas. But I have no idea if that would do anything in your case right now because it may be too far advanced which could also be why the Remicade isn't working. Sadly that can happen and I'm sorry you're going through this again. 6MP is an immunosuppresant which could help prevent having anymore in the future. Perhaps you could bring it up with your doc and see what they say? I know it sounds like a scary drug but its helped many people, including myself (to stay in remission but I've never had a fistula) plus its not like you aren't already using the big guns by being on Remicade.

I hope you get all fixed up and start to feel better soon. I know surgery and all these tests aren't fun but you gotta do what you gotta do. Good luck!

 

[Domsmom]

Sorry, I don't have fistulas and haven't been on Remicade, but I hope that you feel better soon!

 

[CrohnsNYC]

I have been on Remicade for almost two years and still have issues with fistulas. I am having a Seton placed tomorrow. My doctor and I have discussed switching to Humira to see how that works. Maybe it's time for a switch for you too? So sorry you are going through this. I know how bad it sucks! Good luck with the MRI.

 

[Cookie]

Remicade did not work for me either. I have had two surgeries for rectovaginal fistulas that continually developed abscesses. The last one was in October of 09. Seems I can go about a year and then another pops up. Currently I have what I think is another developing. It is minor at the moment (compared with when I had my surgeries), but it has been holding steady like this for several months. I am holding off on doing anything about it because, like you, I have been the queen of Cipro/Flagyl and I am at a point where I would rather deal with the inconvenience. But like I said, it's not very bad at this point. I know from experience when it's getting out of control and then I have to start the Cipro/Flagyl treatment again, which only prolongs the inevitable...surgery.

Sorry you are going through all of this. I feel your frustration...believe me! Have you thought about trying Humira? It has worked for many. The last time my doc suggested it, I was hurting pretty bad and opted for the surgery instead. If I end up back there again, I will probably try the Humira before the surgery. My last surgery was a pretty painful recovery. I agree with you that it's not a cycle I wish to continue.

 

[annak87]

An Update and Thanks

Thank you all so much for the responses. This past month has been very up and down, physically and emotionally. I think my frustration and other emotions have kept me from even looking on the forums lately.

The MRI came back showing no abscesses and that the one fistula was continuing to close. Pain has been bearable the past few weeks until a few days ago when it started to get worse. I saw the surgeon on Thursday. Didn't really know what to expect but what I WASN'T expecting was what actually happened. Scheduled for surgery next Friday. blah. haha that's really my only feelings towards it. He had taken out the one Seton in November and he said it looks like it's puffing up around that area and over to the Seton that's still in place and collecting stuff, forming an abscess. So I'm having the abscess drained and another seton put in. Not a big deal but I've never had a week to wait before a surgery so I'm finding myself a little anxious.

Remicade really has helped my gut issues and apparently is slowly, but surely closing the fistulas so my GI and I are apprehensive to switch around. Crabby, I was unaware that other Crohn's meds are used WITH Remicade and my surgeon actually mentioned discussing adding something when I see the GI. I was on 6mp in the past, so that's definitely something I'm going to talk to my GI when I see him in a few weeks.

The surgeon ordered a CT scan when I saw him, so not only did I get to have my butt poked around but I also got to drink all the yummy barium in a span of 2 hours! I've been having more stomach problems than usual so he wanted to get that just to check things out so my GI would have the readings when I saw him.

So on the 4th, here goes my 4th surgery in 14 months. Is it terrible that the one part of this that has me terribly heartbroken over is that it will keep me from going out with my friends for the Super Bowl on the 6th? haha

Thanks again everyone,
Anna

PS.. Go Steelers!

 

[Entchen]

Hi Anna: Oh, dear, you're racking up far too much surgery; take good care during the process and we'll be sending wishes for a smooth recovery -- and, ideally, no more surgery. Hang in there.

So sad that you'll have to miss the Big Day with your friends. Sounds like a post-Super bowl wrap-up party will be in order.

I don't have a favourite US football team (oops, almost typed hockey), so I'll cheer on the Steelers for you, too. One more voice can't hurt, even if I'm expecting things to end at three downs and getting confused when the fourth starts up, right?
:goodluck: