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Need Opinions please. What would you do???? Rectal abscess/fistula

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Crohn's Disease
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Posted 10/19/2007 4:42 AM (GMT 0)
Will try to make this short. Last year I had a perianal abscess; severe pain up inside rectum, fever, etc. Was admitted to hosp. for 2 weeks drain put in and taken out before discharge. about 2-3 weeks later it came back, so had surgery by colorectal surgeon. Now jump to February this year, according to my gastroenterologist when he scoped me he says I have a fistula and sent me back to the colorectal surgeon. Surgeon says no it's the abscess again. Went in for surgery, stayed overnight came home. Running high fever and severe pain; went back in 8 days later and ended up being sent hospital for urgent surgery again. Stayed for 3 days because of the pain. Came home and had the most god awful pain I have ever had to deal with. Lived on Percocet for a couple months and that just took the edge off the rest of the time I was in the hot tub or heating pad on high. Not to mention was afraid to eat as I would have diarrhea and well lets just say would not make it to the bathroom. When I finally got up the nerve to take a look down there I found I had an extra hole that stool was coming through. I have been following the surgeon up until July when he released me. He still maintains it's an abscess and I just need to be PATIENT FOR THIS TO HEAL. Well it has been since February now and I still have an extra "freeway" from up inside my anal canal to outside and still passing stool through this hole, still having to use the bathtub or sitz to manipulate the stool out of this hole and still will have accidents if having diarrhea. Now I just had a CT scan that my gastroenterologist ordered and he calls me to tell me it is a fistula. He even showed me the scope pictures and said it is a fistula not an abscess. Now, I know I did have an abscess in there but now I just have an extra "freeway of poo". He says to get my remicade this week and if in 4 weeks it is not closed I need to go back to the surgeon.  Well, if it hasn't closed yet it's not going to close in 4 weeks. It is the same as it has been for the past 8 months. What would you do if your gastro and colorectal surgeon don't agree on what this is. I already know my surgeon will not do anything more with it. I have asked him if he could at least close the hole inside the anal canal so that stool can't come through and then let it heal this way but he says no. Any advice, opinions or comments would really really be appreciated as I am seriously considering going to get a third opinion. I am just afraid if it continues with the bowel going through there that eventually I may have more problems in the future.
Posted 10/19/2007 12:48 PM (GMT 0)
i have had alot of problems with abcesses and fistulas.  Just closing up the fistula is very tricky.  I have had 3 surgeries trying to get rid of mine and nothing has worked and that's why i have a c-ton in there now.  It's a plastic ring thing that keeps it open.  The problems is that they won't do a fistomotomy (spelled wrong) because it cuts into the anal muscle which helps control holding your poo and crohn's people need that.  Then they can do the advancement rectal flap surgery but the problem with that is that the fistula often comes back and that's exactly what happened to me.  Had the surgery and about 2 months later it was back.  Then there is the plug-never had but again fistula can come back.  Most the time we get the c-ton.  Now it doesn't get rid of the fistula but keeps it open so it doesn't close up into an abcess again and i'm sure you don't want to play that record again.  As far as the doctor situation, i would ask to be referred to a new one by your gastro.  If he knows you have one and you tell him that the surgeron doesn't believe him i'm sure he will.  If you have an insurance that doesn't require referrals then just find a new one yourself and get a second opinion. 
Posted 10/19/2007 1:46 PM (GMT 0)
I would agree with your GI on this one and get another opinion from a Colo-Rectal. An abcess is a bubble of infection. There can't be anything going through that bubble such as poop. I had the abcess that turned into a fistula. It's so hard to heal a fistula and the doctors won't do the surgery required because of the Diarrhea issue. My doctor is suggesting the plug for me and I am so skeptical because I don't want to have another abcess or fistula form. The one I have is painful enough. You have to go with your gut on this one and make sure you feel secure. Half the times these darn doctors don't know what they are talking about and our lives are the ones on the line!
Hope you feel better soon!
Posted 10/19/2007 2:50 PM (GMT 0)
Another alternative that on one talks about is a temporary ostomy. Divert the stool so the the rectum has time to heal and the fistula has time to heal.
Posted 10/19/2007 4:00 PM (GMT 0)
Kilcher,

You mention with a Plug the fistula can come back. Is it usually in the same area?

I also have a fistula and was thinking about putting a plug in it.
Posted 10/19/2007 4:20 PM (GMT 0)
i never had the plug but I did have the advancement rectal flap surgery which where they cut out a flap out of your rectum and cover the hole on the inside.  The surgeon was leery of doing it.  I think is about 60% or so chance of working with crohn's patients and for me it came back.  It came back right next to the old fistula about 1/16-1/8 inch away from old one.  They were going to do the plug originally but when they got in there the first time i guess the tract wasn't long enough for the plug so they put the c-ton in.  Well after about two months she took it out and it closed up and backed up into an abcess, which in turn cause the fistula to come back.  Now i have the permament c-ton in.  I hate it but i guess it's better than it closing up again and getting another abcess.  I'm pretty sure it will come back in the same place, at least it did for me.  Fistula's are nasty little things and one of the worse complications of crohn's because they are so hard to get rid of.  Now, i've come to realize that i will probably have this darn thing for the rest of my life.  The plug can work for some people and some it doesn't.  since the crohn's causes them, if you get rid of one and the crohn's isn't in check, they can come back.  It's a neverending battle and i wish everyone better luck than i've had.

Posted 10/19/2007 4:31 PM (GMT 0)
I am just soooooo sick of this fistula. I know I should be greatful that it is an anal fistula and not between two organs, but i'm still sick of it. At this point (after 5 years of leaky butt syndrome) I feel that to close it for a while and have another absess/fistula form would be better than this. I know I'll probably feel differently at that time though. LOL.

Good luck everyone. I have a remicade appt on halloween. I'm going to make a surgical appt then.
Posted 10/19/2007 5:57 PM (GMT 0)
It is definitely a fistula.....I would find another surgeon. Personally, I think that the one you have now, is just sick of dealing with ongoing crohns issues.

If you close the hole on the inside, you risk it abscessing again. I use 2 4x4 gauze sponges, that I buy from a medical supply store, and I fold them in half, and stick them in my crack right up against where my fistula opens. It catches the drainage, and keeps it off of me. I have a seton in mine, to keep it open. I have been on remicade, and I and my surgeon do believe it is slowly healing. I decided to keep the seton in there so it won't abscess......it doesn't bother me and I have no pain with it, so I am leaving mine alone for now...
Posted 10/21/2007 2:27 AM (GMT 0)
Thanks for all the responses. I went in Friday to get my Remicade and, well I had a temperature of 100 and got sent home. I now have along with the fistula on the left side, an abscess on the right side. He put me on Flagyl and Levaquin. To add to this, when I don't get my remicade things seem to spiral out of control and I end up in the hospital and I also get "severe" joint pains when I don't get my Remicade. Last night my joint pains got so bad I could not move without being in pain and I am going to try my best to make it to next Friday and hopefully get my Remicade. I have been soaking in the tub as many times as I can trying to get this abscess to break open which it has started to do but it is being very stubborn.

Posted 10/21/2007 2:38 AM (GMT 0)
You need to get the abscess surgically drained, or it is just going to come back. The antibiotics should help the fistula, but they won't help the abscess....
Posted 10/24/2007 3:27 AM (GMT 0)

JudyK89 said...
Another alternative that on one talks about is a temporary ostomy. Divert the stool so the the rectum has time to heal and the fistula has time to heal.

I just had an appt. with my family doctor. Took in all my reports and she sat down with me for about 45 minutes discussing everything with me and she really feels I should go the temp ostomy route. She wants me to take this month and think about it, or longer if I need to. I know she's not my Gastro, but she spent so much time with me going over everthing and explaining everything to me. She knows I have been fighting 1 abscess after another for the past 4 years and now this fistula and thinks it would make a world of difference.

My question now would be will it actually for sure close up if I did and it is it worth it to me right now.  So, I guess I have some thinking to do.

Chroniemom, would love to hear your thoughts as you have dealt with these things for so long; would you do a temp colostomy or not????

Posted 10/24/2007 12:21 PM (GMT 0)
Hi Just wondering how long you have been on the Rem. and if your B-12 is good ? I did not have anal fistula but one to skin surface after surgery. It would close up and drain by itself 3 or 4 times before it closed completely. This was at about my third or fourth Rem. infusion. Are they in a hurry or are they able to wait that long to see if it works. I know some people who have surgery have more fistula's too although that would give that area a break. Hope you decde what's best for you I know it is worrisome to have them and was glad when mine healed. lol gail
Posted 10/24/2007 3:07 PM (GMT 0)
I have been on Remicade for 4 years. I am getting the maximum dose now ever 6 weeks. As for my B12. My family doc just this week told me that I need to get on B Complex. If everythihng goes as planned I will be getting my Remicade this Friday. There is no hurry and I can choose to wait it out. My surgeon originally told me to give it a year to heal; so February would be a year and I could wait and see.
Posted 10/24/2007 11:54 PM (GMT 0)
Mishball-My fistula came back in the exact same spot 6 months after I had the plug placed there. It was after my 2nd remicade infusion so I suspect it may have something to do with that......I lost 4 months of work for nothing!

Posted 10/25/2007 1:37 AM (GMT 0)
Well, I am certainly not opposed to a temp. ost. I have asked my surgeon to just take out my colon and rectum so I don't have to deal with all the abscesses and fistulas, but for obvious reasons he won't. :)

Did your GP recommend another surgeon for you? Unfortunately there are no "for sures" with crohns....you could get the temp. ost. and it still might not close..... I guess I would talk to a couple of different surgeons, and your gi. You all ready know what your gp thinks you should do, and then after you have all that info., you make an informed decision and go for it. Keep us posted.
Posted 10/27/2007 2:05 PM (GMT 0)
I had a temporary ostomy, it was actually a colostomy because they only by passed the rectum area. It worked great, all my fistulas went away and I had rectal/vaginal, perianal, and pelvic floor fistulas.

I never had it reconnected because I would have had to have it done over and over again. So now, because of many more surgeries over the years, I still have my rectum, but have a permanent ileostomy.

It's a huge adjustment at first, really plays a number on your body image, but I haven't regretted keeping my ostomy since.

I've never had another fistula until my last flare when I had an abdominal fistula. It was much easier to deal with, I could see it and take care of it and didn't have to sit on it, lol.
Posted 10/29/2007 4:06 AM (GMT 0)
Dodge girl, sounds like you are having lots of problems, I have had multiple rectal surgerys, and they are about the worse you can go tru. I agree it has been a long time for you, and it would seem thing should be better by now. When I have a Dr. Im not happy with I find another, remember some one was last in every class at med school. I dont know where you are going for care, but I would recommend one of the Major Hospitals, that have a special section that treats crohns, A doctor that treats crohns, and see's one or two patients a month, I dont think is ever a good as a doctor that see 20 per day....
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