Three peri-anal abscesses and now an incomplete fistula!

I also failed to mention that I have been dealing with a ruptured disk in my back that is pressing against the S1 nerve root. All of these things have caused me extreme chronic pain and the best thing I ever did was see a hospital affiliated pain management doctor.

I had an abscess that ruptured on its own in September which has since become a fistula. In the past, when I had an abscess, Cipro & Flagyl got rid of it, but they aren't strong enough to eliminate a fistula. The colonscopy also said my only inflammation was in the rectum and that I currently have 'atypical' Crohn's.

My GI told me that the only thing that will cure a fistula is Remicade. We've been trying to get me on Remicade since January, but my HMO won't approve it until I've exhausted oral meds.

And you just halted that very expensive and very much in demand therapy.

In doing so, you might have inadvertently made yourself immune to remicade.

I don't know if they'll let you go back on it, even if you begged.

I don't know of any other medication that will cure your fistulas the way Remicade would have.  

Remicade may or may not be a 'cure that is worse than the disease', but you'll never know now because you never gave it a chance to help or hurt you.

As much as I am terrified to death of being on Remicade, I know that it is the only thing that will remove my fistula(s).

I'm tired of having a hard lump draining fluid between my anus and vagina. I'd gladly trade it in for a new symptom of my disease, whatever it may be.

Thanks for each of the replies. Oddly enough this is the first time that I have been given antibiotics like flagyl since this all began in October. This will be my third week to be on the flagyl. Actually I have gotten three opinions from three different GI doctors, one of which is an expert on Crohn's Disease at the Baylor College of Medicine. The first GI doc administered the colonoscopy on me and said that I had no signs or Crohns in either part of my colon. The 1st doc did say that I had some inflammation in my rectum, but it may have been a result of the February "so called radical surgery" that I had done on the five inch deep abscess. I also had the promethias blood test done, which came back negative or normal as they put it. Oh! and yes all surgeries were performed by a colorectal surgeon. As of my recent stay in the hospital at the end of March, I saw the 2nd GI doc who ran numerous tests and told me that none of my symptons or tests pointed to Crohns or UC, nor could they find any infections in the biopsies. The 2nd doctor decided to put me on Remicade where I rec'd my first infusion in the hospital around March 30th. After getting discharged from the hospital I saw the third GI expert doc, where he said that he didn't think I had IBD and that I should not be taking Remicade. After getting all these opinions its been mind blowing and very exhaustive, so as of now I am only taking the Flagyl. This thing has consumed my life, my job, and everything else. I'm willing take to advice from anyone that has had experience with this, good or bad. As for now I'm taking the flagyl with the supposedly oppurtunity to take the Remicade in 4 weeks if this thing doesn't heal. I am aware of the anti bodies that can be produced by the body from starting/stopping Remicade. Other than the GI doc I saw in the hospital, the other 2 GI docs as well as my pain management doc has said that I have no buisness taking Remicade.

It might have been the Remicade that helped to ease the inflammation, but also the antibiotics could have helped. I am so darn sorry you are sufferin so much. Have you asked about getting a pill cam test? Crohns can hide in areas where the scopes don't reach, and the pill cam might be able to find it when a scope or naked eye can't see. Also did they take biopsies during your scopes? Biopsies would show the disease too. I have always thought that Fistula's went hand and hand with Crohns, but I could be wrong. Big hugs to you!

Not fun at all, been there and done that. In my experience remicade is the only med that will heal your fistula and help inflammation in the rectum, and I've tried everything. My vote is with doc #2.

All the best,
Julia

I don't have the weight loss, the D, joint pain, or any other symptom of Crohns either, denoli82, just the abscesses and fistula.
I did, however, have all these symptoms twelve years ago and that's how I was diagnosed.
Aside from this, I'd say I'm also in the fittest condition of my life. I don't know why I'm only getting abscessses/fistulas and only mild inflammation in the rectum. If it wasn't for this abscess/fistula, my Crohn's wouldn't even be considered active and i would be in year 11 of remission.
Maybe you just have a rare type like mine.
I definitely believe your inflammation went down because of the Remicade.

I have just had two surgeries for fistulas and infections in February and March, a week apart. I have been diagnosed with Crohn's disease. I developed an abscess in December which opened on it's own and drained (to my horror). I was on antibiotics and got better. But as soon as I went off the antibiotics, I could feel the infection coming back. So my doctor referred me to a colo-rectal surgeon. Unfortunately for me, the second fistula and infection didn't make its presence known until a week after my first surgery. I have been off work for two months and am just now getting around a little. The pain has been horrendous ... sitting, walking, standing, bending over ... all of it painful.

Firstly, generally Flagyl and Ciprofloxacin are used together to treat perianal abscess. I have been prescribed these two as a team by three different doctors ... my general practitioner, my gastroenterologist, and my surgeon. I have also read repeatedly on the internet that these two antibiotics should be prescribed together for this particular problem. I wonder why you weren't given both.

Secondly, you CAN get these perianal fistulas and abscesses and not have Crohn's. Ironically, one of my friends developed the exact same thing I did in December, two weeks before I did. She does not have Crohn's or IBS. Since I have shared my problem with people, I have heard from others who have developed abscesses and fistulas even though they don't have the disease. One gal (a friend of a friend) developed two of them after childbirth.

Thirdly, Remicade will help heal a fistula. I started Remicade in January to treat the Crohn's disease but had to stop because my body decided to be allergic to it during my third infusion. However, from what I have read on the internet, Remicade is only like 50% effective in healing fistulas and keeping them closed up. If they are infected or connected to an abscess like mine were, then you don't want them to close up with Remicade because it will just trap the pus in there and make your problem worse. In that case, the fistula must be treated surgically ... which is the only true method of getting rid of one. (I've been doing my homework on the internet for months.) A common surgical treatment used to heal and close up fistulas is called a seton stitch. Look it up on Wikipedia or Google it. I have seton stitches now in my two fistulas and will have them cinched up for the first time on Thursday (now that most of the pus has drained). It will be a 2-6 month process to get them closed and sealed up.

That said, you need to see a surgeon who specializes in colo-rectal surgery so that the fistula can be properly treated and healed. Don't bother with the general surgeons. Just draining the abscess won't fix your problem. My surgeon is fantastic because this is his area of expertise. The right doctor can make all the difference! This has been a long ordeal for me. But I will be going back to work on Friday! Don't worry about the Crohn's at this point. Just get that infection and fistula operated on by a specialist so that you can get your life back!

I don't understand why they are telling yo that you don't have Crohns' Disease.  They did the same with me whil I was on TPN for 8 months in the hospital.  You need to get a new GI doctor...someone you trust.  When it comes to fistulas, they say that they can't fix them,  but they can.  I have a vaginal-anal fistula.  I have had it for the last ten years.  It doesn't reek havack on my life but it's there.

Denoli82- I have been having issues with not healing after and abcess was drained and then a fistula formed. Had a fistulectomy done and 1 and half years later I am still bleeding and not healing from the surgery wound where the opening was.

Where is your surgeon located?

I am in NE Florida and would love another opinion. Everytime they test for things and everything comes back normal yet I never heal. I heal fine everywhere else just not the perineal fistula area:)

Thanks in advance