I battled UC from 1992 until 1999 when I had my colectomy and J pouch surgeries. I've been dealing with recto-vaginal fistulas off and on since 2006. The surgeon has tried setons, Flaygl, Cipro, flap surgery, glueing it...all work in the short term, but now it's 2010 and I'm kind of in the same place as 2006.

I've had a fever around 99-100 degree (or up to 102) for 4 weeks straight, then off and on for another 2 weeks. I had a lot of pain near my tailbone. This was while on the Flagyl. Today a flex. sig. finally did show cuffitis.

My new surgeon referred me to a GI who thinks I actually have Crohn's after all. She thinks the fistulas can be treated finally and successfully with Remicade. All the risks scare me so much. Anyone have advice on this decision?

I also very much want another baby. The Lord blessed us with one very healthy little girl despite all my troubles before! The Remicade is supposedly safe for pregnancy, but all the side effects that people are treated for (from nerve damage to hair loss to joint aches) seem severe and serious if pregnant. Advice?

Does Remicade help pouchitis and cuffitis or will I be on Remicade plus a laundry list of other drugs?

Thank you!

I know personally two people who have had normal pregnancies/children while using Remicade. I have been told by my doctors that Humira (similar to Remicade) is safe because it does not cross the placenta.

I used Remicade for some time because of a fistula, and it kept my fistula closed for a while but the results were not permanent unfortunately. I then tried Humira, same results. But, that is not the case for everyone. Personally, this is just my opinion, but I would try medications before having major surgery (pouch removal, etc.). If you do have very serious reactions to Remicade that could be a problem while pregnant, so I would at least have a couple of infusions before you TTC and see how you do. But, I'm sure your doctor would advise you on this. (I would definitely see a high-risk OB/perinatologist with your history.)
Yes, Remicade should help your pouch/cuffitis, especially if you have Crohn's. You may benefit from a suppository/topical medication if you are currently dealing with cuffitis. There were times I still needed antibiotics in conjunction with Remicade/Humira but not always. Good luck.

Thanks Shelby!

I'm glad to hear you know of two women on Remicade with healthy pregnancies and kiddies. That's reassuring.

Did you have any reactions to the Remicade or Humira? I hear all these horror stories about joint problems, hair falling out, nerve damage and it really scares me! Did you feel that your immune system was compromised because of the Remicade?

Yes, I was told that my fistulas should stay closed with Remicade which is why patients are on it "indefinitely" (which I take as "forever"). I hate the thought of what this will do to me long term. I guess that's why I'm so hesitant to say yes to Remicade.

One more question- I hear Remicade can be very expensive depending on insurance, etc. What was your experience?

Thanks again for your reply.
Laura

I have been on Humira about 4 years with no problems. I have had surgery with no issues too. But, well past my childbearing years, so can't speak to that. For me, the benefits far outweigh the risks, which are pretty minimal. I think the horror stories you hear about are extremely rare or mostly due to other drugs, because I have not heard of them for the anti-TNF drugs.

My insurance covers Humira and Remicade like regular brand name drugs, with the same copay.

Jan

Never had a problem on Remicade or Humira in regards to picking up buggies and such. I think I've had the seasonal flu twice in the last 10 years...
My GF has been on Remicade for about 6 years. She has two little ones totting around, one in pre-school now, so they have had their share of colds and such but more than likely it's just kid-crud.
I never had a problem with Remicade. I recently had to stop Humira due to a reaction I was having but it was probably the cipro I was taking. Cipro is notorious for side effects but it will be impossible to know which drug was causing the problem since both drugs can cause the side effects I was experiencing. I'd place my bet on the cipro only because I had been on Humira for well over 2 years without a problem, and had recently upped my dose of cipro. I also have concerns about the long-term consequences so you aren't alone there.
Insurance always paid for me, just required pre-authorization, but my co-pay was very reasonable.

Jan and Shelby,
How often are you on other drugs with the Humira (Shelby you mention Cipro)? Do you take other maintenance drugs?

I'm pleased to say I only take metamucil daily, but then I feel like I've been on Flagyl for 3 years (off for about a month or so until symptoms of the fistula reappear, then back to it 2x a day). I really don't want to sign up to Remicade AND be on Flagyl all the time again.

Jan, what is the Humira helping for you? Do you have fistulas as well? I'm dealing with cuffitis at the moment as well.

Glad to hear you both have good experiences with the insurance piece.

-Laura

I take Humira for enteropathic arthritis. I also take Azulfine for that and cuffitis, a beta blocker for tachycardia, Vicodin, and supplements of fish oil, calcium with D, folic acid, and a probiotic.

You just get used to taking maintenance meds.

Jan

I was on a similar schedule as you, as far as flagyl goes. However, if I remember correctly (it's been a while!) I didn't take anything else when I was on Remicade. That kept my fistula closed for almost a year. Dittos when I switched over to Humira. But, I would finally succumb to needing antibiotics when the biologics were no longer working perfectly. But, you may be completely different! And I hope for your sake that you finally have complete resolution. Unlike you, I've never tried any type of surgical intervention for my fistula. Luckily, my fistula is rather small in diameter so the drainage is manageable for me and I am just living with it. I was having problems a few months ago with it getting infected so I switched from flagyl to cipro for a while.