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Crohn's Disease
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Posted 12/19/2007 5:15 AM (GMT 0)

Hello Everyone, I am a newcomer to healingwell. It looks like a very helpful site and I am glad to have found it. Anyways I was diagnosed with CD about a year ago. I have been dealing with perianal fistulas for 2 years and it took my primary care Dr a very long time to send me to someone else. I was started on prednisone at first and was on that about 8 months. That did help the fistulas but once I started weening down they got bad again. My GI then had me on AZA which did absolutely nothing for the fistulas. Ive had antibiotics in combination with the meds and it only seems to heal temporarely. Now I have been on Humira for about 4 months and for the first couple months it seemed to help the fistulas. But the last month and a half they are now coming back,getting worse every day. They cause so much pain at there worst that i just lay on my side on the couch. They are not to that point again yet but are getting there. They leak fluid alot so it feels yucky down there on top of everything else. I have a 20 month old son and this seems to be reaking hazard on my life. Its hard for me sometimes to even get down and change a diaper. I am going to a new GI on friday, insurance reasons. I get so sick of laying on that table showing strange docs my butt. It is so humiliating and it just seems that nothing helps. I do not have alot of stomach pain due to my CD, but does anybody have any advice on what to do about these fistulas.  Well thats some of my story thanks alot for anyone who listens. THis is a hard disease to live with.

Posted 12/19/2007 5:38 AM (GMT 0)
Welcome packfan,
I don't have any advice to give you on fistulas, but I'm sure someone will come along shortly to offer you some. You are right...this is a wonderful site. You will find people here very helpful, sympathetic, funny....I think you will quickly become "one of the family".
I welcome you on behalf of all of us. You are so right...that this dreadful disease is so hard to live with. It is humiliating, painful, frustrating, disheartening....but you have come to the right place. I'm glad you have found us. Come to us often. ...and hang in there...things will get better.
Mary
Posted 12/19/2007 10:40 AM (GMT 0)
Hi and Welcome to Healing Well,
I do not have fistulas, There are ppl here I now whom can help with problem. Also if you need to vent ask question there are alot of good ppl here.
Posted 12/19/2007 2:21 PM (GMT 0)
Welcome! I have had a few fistulas. I got one to close with high doses of flagyl, cipro, and remicade. I currently have a seton in one right now, and I am still on the remicade....3 years now. In March, my surgeon is going to do an exam under anesthesia to see how much muscle involvement there is with the fistula, and if there isn't any or hardly any, he will do a fistulatomy. And that will hopefully be the end of that one! I have had the seton in for a little over a year, and I have absolutely no pain or problems with that fistula. I use 12 ply 4x4 gauze sponges that I buy at a medical supply store. I fold 2 of them in half, and then tuck them in my butt cheek right up against the opening to the fistula. This keeps the drainage away from skin. I change them periodically throughout the day. They only cost around $5, and that will last me around a month. I don't even feel it in my butt crack anymore, and they don't fall out either. Hope this helps....hang in there!
Posted 12/19/2007 3:28 PM (GMT 0)
Hi and welcome.
Glad you are here.
Posted 12/19/2007 5:29 PM (GMT 0)
Welcome, packfan! Have you taken antibiotics for your fistulas? I had one that closed with flagyl and levaquin. I really hope your new GI has some better answers for you. Hang in there!
Posted 12/19/2007 10:10 PM (GMT 0)
have taken flagyl. only a temporary fix. Thanks a bunch everyone
Posted 12/20/2007 3:14 AM (GMT 0)
This site has saved my sanity on MANY occasions.... I'm glad you found it.

You might have already read my posting under the recent fistula/pregnancy post, but just in case:

I had a peri-anal fistula as well, that abscessed almost 360 degrees around my colon. I know the "icky" stuff you're talking about all too well. I spent more money on bandages to keep my panties clean than on anything else! My body did not like Flagyl, Methotrexate, Prednisone, Purinethol, Imuran, or Asacol. And those are just the ones that I can remember. The only relief I found was in a serious Remicade routine. I went every 4 weeks for a year. I took prednisone for the first month, but it made me feel psycho, so I weened off of that at about the 5 week mark. The drainage slowed after the first treatment of Remicade, slowed even more after the second, and completely stopped after the third treatment. The drains were left in just to be sure, but pretty soon, my body was healing from the inside out and pushing the stupid little tubes out so far that the stitches were pulling at my skin! I've never been so happy about such a stupid pain before in my life - I just knew it meant it was time for them to GO!

I know that Remicade is not a miracle cure for everyone. But, having said that - it sure made a difference in MY life. And I think it's because we were so aggressive with it from the get go. I've learned, in the last few years, that doctors tend to have one of two approaches to crohns.

1. Docs start with the "little stuff"... increasing it here and there if it isn't helping... maybe throwing in some steroids...etc.etc.
or
2. Docs throw the most wicked powerful stuff at it to get it under control, and get the patient back to living a LIFE, and then work backwards. Like "well, you're doing well, maybe we can stretch the Remicade to every 6 weeks, then 8 weeks... "

I haven't had any trouble since I started the Remi (knock on wood), and I'm probably going to use it at least until after I have a child or two...assuming my body gives its permission. We'll see, but so far, so good.
Posted 12/20/2007 3:29 AM (GMT 0)
Welcome packfan!

Glad you found the site, but sorry to hear about your troubles. I have a perianal fistula and currently have a seton and am on Remicade. Mine started with a very nasty abcess, which cleared up after several months on flagyl and levaquin. I felt really rotten until the massive infection and cellulitis cleared up. I couldn't sit at all for 2 months because of the pain. Once the infection was over, the pain left. So I am wondering if you still have an abcess/infection. My first Dr. had me on flagyl and levquin on and off, but then a new GI doc -- who knows all about CD -- said stay on them until the infection is over. It worked!! But watch out for flagyl -- stop it immediately if you start to get numbness or tingling anywhere (nerve damage). The seton is doing its job. It has really kept the fistula from plugging up and forming another abcess. I have a little bit of drainage. I cut old T-shirts into strips and place then on either side of the seton so it won't rub my skin (they are soft, absorbant, and cheap at Thrift Stores). I use Balmex if my skin gets irritated (rarely now).

From what my Drs tell me, perianal fistulas don't heal on their own. You will need surgury or will need to keep the seton in to keep it from clogging.

Hope this helps! You can learn alot from this website!
Posted 12/20/2007 5:08 PM (GMT 0)
I am so sorry to hear about the painful CD problems you are having...my heart just breaks when I hear stories about oozing fistulas, etc. I have been blessed, thank goodness, that I haven't developed any fistulas from my CD...I worry about developing a fistula more than anything.
So I don't have any suggestions for you about that...I just wanted to tell you to hang in there-it will get better, just keep pressing your Dr. for help, it's your body and your pain, let him/her know how much pain you are in and stay informed as to all of the latest treatments. We are here to help if you need it. Happy Holidays to you and your family!
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