Three peri-anal abscesses and now an incomplete fistula!

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denoli82
Regular Member


Date Joined Apr 2010
Total Posts : 35
   Posted 4/10/2010 1:17 PM (GMT -7)   
Ok, so since October 2009 I began to get a peri-anal abscess that was drained under anesthesia in the hospital. The pain from all of these experiences are horrific! So then in January I began to experience more pain and had an MRI where they discovered that I had a five inch deep abscess between the genatalia and anal area. I again went under the knife where it was drained and a drain tube was placed inside of it. I also had an colonoscopy, in which they found inflammation in the rectal canal only. During this time I was never given any anti-biotics from the surgeon which seemes weird. So as of current this thing has turned into an incomplete fistula. I've been in and out of the hospital four times since all this has happened, and they have ran numerous test on me. The doctors told me that everyone says that I don't have crohns or Uc; however these abscesses and inc. fistulas wont go away. Recently when I was in the hospital, the GI put me on Flagyl and also an IV infusion of Remicade. He said that Remicade has been shown to heal fistulas even in non crohns patients. After being discharged from the hospital I learned of the side affects that Remicade can cause and halted the therapy, where I am now only taking the Flagyl, along with other pain and anxiety medications. Im a 28 year old male married. Can anyone with any experience with abscesses and fistulas give me some in sight or advice??? I also havent been able to work for about 4 months because of the dreaded MESS.

denoli82
Regular Member


Date Joined Apr 2010
Total Posts : 35
   Posted 4/10/2010 1:20 PM (GMT -7)   
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.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 4/10/2010 3:21 PM (GMT -7)   
Was the surgeon a ColoRectal Surgeon? I'd see about finding a new GI! What are they saying is the cause of the rectal inflammation?

Sorry you are having abscess/fistula problems...they are NO FUN:(
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 4/10/2010 5:33 PM (GMT -7)   
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.
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
My HMO refused the Remicade and now I could be going on Lialda or sulfa? blah


joy47
Regular Member


Date Joined Feb 2010
Total Posts : 75
   Posted 4/10/2010 6:34 PM (GMT -7)   
Hey, Fistulas really suck Ive been dealing with them for 9 years. I had to have one drained in the hospital when i was young. It came back one other time, but i took flagyl and it went away for about 15 to 20 years then out of the blue it decided to stay and turn into two of them ive had another surgery that was 9 years ago ive tried cipro, flagyl, remacaid but couldnt afford it . It did seem to help but i wasnt on it long enough to know for sure. now im on humira its not really helping that much i mean it does stop some and when it comes back i just do sitz baths i keep on it until it drains. Then it will leave for a week or two. Unfortunately it still comes back. As far as the side effects the one to really worry about is predisone. Which , if you do have crohns is used often for inflammation. So really every one of these drugs has awful side effects it depends on your limitation. Also about your doctor mabe it wouldnt hurt to get a second opinion. It seems really close to crohns. I pray that it is not. Any way hope that helped some. Just do the best you can stay informed. Good luck to you! :-)

denoli82
Regular Member


Date Joined Apr 2010
Total Posts : 35
   Posted 4/10/2010 10:51 PM (GMT -7)   
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.

denoli82
Regular Member


Date Joined Apr 2010
Total Posts : 35
   Posted 4/10/2010 10:55 PM (GMT -7)   
Oh yeah! one more thing. On Thursday my surgeon scoped my rectum and said that the inflammation had subsided, so I'm guessing that is a good thing. I just wished I knew if the inflam. was a result of the surgery or somthing else and what medication, if any caused the inflam. to dissapear.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/11/2010 6:56 AM (GMT -7)   
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!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

joy47
Regular Member


Date Joined Feb 2010
Total Posts : 75
   Posted 4/11/2010 9:17 AM (GMT -7)   
i feel for you and your pain. im no doctor but i dont think fistulas are just for crohns. but i could be wrong. you just have to go with your gut when it comes to all these doctors. You are in my prayers.

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 4/11/2010 11:22 AM (GMT -7)   
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

denoli82
Regular Member


Date Joined Apr 2010
Total Posts : 35
   Posted 4/11/2010 2:40 PM (GMT -7)   
Thanks to all the replies from everyone. Yeah, they did take biopsies during the colonoscopy and everything came back negative. The weird thing is that I dont have the weight loss, the D, joint pain, or any other sympton of Crohns. In fact the surgeon I use is a top surgeon in houston and says this is his first case. Ive always ate well and was actually shooting to train for an amatuer body building show when all this happened. My diet was great and I was working out regularly. I just got married back in 2008, so this mess has really put a dent in our life; luckily my wife has stuck behind me 100%. Thanks to all and I will update and continue to ask more questions as they arise. Yall are awesome.

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 4/11/2010 4:22 PM (GMT -7)   
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.
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
My HMO refused the Remicade and now I could be going on Lialda or sulfa? blah


denoli82
Regular Member


Date Joined Apr 2010
Total Posts : 35
   Posted 4/11/2010 4:34 PM (GMT -7)   
Inflammation completely gone after only a week on Remicade? Maybe yall are correct. It hard for me to know because I hadnt been on any antibiotics before now.

Shany
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/13/2010 8:11 PM (GMT -7)   
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!

denoli82
Regular Member


Date Joined Apr 2010
Total Posts : 35
   Posted 4/13/2010 9:33 PM (GMT -7)   
The surgeon that I am and have used is a colorectal surgeon. I just saw him last week and he says that another surgery now is not in my best interest because he would have to rip me wide open and again if it doesn't heal, i'll be left with an even big hole. Honestly, I don't know what it is that I need to do, whether it be remicade, another surgery, or whatever. Each time I feel like I've made a choice to proceed with Remicade, another story like this comes up. The even more mind boggling thing is that after getting three opinions from three different GI's, one says another surgery, another says remicade, another says give it time. What gives? I dont know

kmfdm
Regular Member


Date Joined Jun 2008
Total Posts : 78
   Posted 4/14/2010 12:42 AM (GMT -7)   
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
Regular Member


Date Joined Apr 2010
Total Posts : 35
   Posted 9/2/2010 10:21 PM (GMT -7)   
i know its been a while since ive posted but i wanted to update anyone who may have read my post before. its official that ive been diagnosed with crohns in the rectal area and again have underwent two surgeries for the same abscess in the past two weeks. the most recent surgery was performed by a new surgeon who is cheif of the baylor c of medicine. this was a very in depth surgery in which he basically removed a ton of scar tissue and cleaned out the old abscess area that kept abscessing. i found out that my old surgeon who was a collorectal surgeon had been blotching me and messing me up even more inside. i was recently in the hospital for three days this past week and am convinced by the new surgeon who also specializes in cancer surgery as well as my GI that remicade is the only way for me to fully recover and heal down there. so to make a long story short i began a remicade infusion while in the hospital and hope that this is the last of the rectal surgeries that i have, being that i have already had five total. i wanted to say that for those of you who have experienced a no hope situation, that there is in fact hope and a light at the end of the tunnel. if there are any newbies out there that i could help with questions, please feel free to ask me.

germanthunder81
New Member


Date Joined Feb 2011
Total Posts : 3
   Posted 2/2/2011 9:17 PM (GMT -7)   
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

amberbates1
New Member


Date Joined Feb 2011
Total Posts : 4
   Posted 2/7/2011 6:24 AM (GMT -7)   
I am so glad there are others out there with perianal abscesses! I've been feeling sooooo down because mine are acting up right now. I have 2 and my doctor wants me to start Humira but I am so nervous about the side effects. Maybe I will try Remicade first and see if it helps. I've seen a surgeon as well and the options stink. Denoli, what was your surgery called?
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