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03-20-2012, 11:29 PM   #1
TheAndersons
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Join Date: Mar 2012
Location: Kenai, Alaska
Fistula Help???

My Husband was diag with Crohn's Disease in 2010 and last October developed an abcess (excuse my spelling) which then was drained and had a stitch put in to keep it open to continue draining. This we are told is a fistula?? Well here we are several months later and it is still a horriable thing that refuses to heal up. He was on antibiotics for a little while (1 week) and Asacol with no relief. His GI doctor now wants to put him on Humira and says its a 50% chance of healing it (I see this as an extreme with little success). Can anybody help and point us in a good direction for healing, the pain for him is unbearable! Thanks.
03-20-2012, 11:42 PM   #2
meesh
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Location: Long Island, New York
Did he take flagyl? That always clears up my boyfriend's fistulas pretty quickly.
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michelle
mama to Liam, born 8/2011
girlfriend to Anthony, 22, dx in 1997 at age 8
4/2012 7cm of small bowel resected, two strictureplasties, appendectomy, two fistulas resected
discovered crohn's is jejunal

meds: vicodin... taking a break and healing
03-20-2012, 11:43 PM   #3
TheAndersons
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Location: Kenai, Alaska
He did right after surgery for about a week, so I should reccomend his doctor put him on some antibiotics?
03-21-2012, 01:49 AM   #4
SomethingIsMissing
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Hello, so sorry to hear of the pain. I have a little experience with them myself.
A few important things:
Use a peri bottle with warm water to clean the area with every bowel movement. (ask at the pharmacy)
Sitz baths throughout the day-evening with Epsom's salt and aloe vera (you can buy aloe vera by the gallon at walmart for little $) and very warm water.
Stop using t.p and only clean with warm water, gently pat dry with a soft dry cloth.
Try not to use any pre moistened wipes, they really can irritate.

Off the norm, I had a really bad time and was a bit desperate. I tried Organic Barley Green in powder form with grape juice-a small amount , worked up to taking 3 times a day. The powder is tough to mix, so use a shaker or it clumps and is nasty to drink. It taste like a lawn smells when mowed. I am not kidding, it helped heal the tissue.
I hope he feels better soon!
03-21-2012, 08:34 AM   #5
Cookie
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Join Date: Jan 2009
Hi Andersons,

Sorry you are dealing with this. Fistulas and abscesses are a pain in the butt...literally. I am not a doctor, but I will share a little of what I know from my experience:

You do want to keep the thing draining. If it is draining properly, usually there is no pain involved. If your husband has pain, then he may have some inflammation/ infection building up. Cipro and Flagyl (antibiotic combo) is usually prescribed to keep the infection out and works really well. Doctors usually start with a 2-4 week course ( 1 week may not have been enough). However, when I would stop taking the antibiotics, the inflammation would return quickly. So, unless your husband wants to stay on antibiotics long term (some people do this, but it wasn't for me), there needs to be another option.

Asacol will not do anything for the fistula. Your doc is right, Humira or Remicade are about 50% successful in healing fistulas. Remi did not work for me and I ultimately ended up having two surgeries to heal mine. But I think that most doctors would like you to try Remi or Humira before resorting to surgery because there can be some risks involved. After two surgeries, my fistula is mostly healed, but I do have mild incontinence which may be form weakening of the sphincter muscles due to surgeris, I am told.

Good luck to you both...hope things get better for you.
03-23-2012, 02:15 PM   #6
Dunbar
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Hi
I found flagyl ok, twice with cipro for the really stubborn ones. I kept getting more fistulas. I had three when I was put on Humira, down to two in a month, six months - none. I haven't had a reoccurance in a year. I also take pre and pro biotics, lots of omega oil, anything to keep the inflammation to a minimum, which i personally believe helps the immune system to do its thing. I hope he gets some relief soon. It's nasty, sometimes. And I hope you are getting support for yourself, it is hard to watch someone you love, suffer. We are always here for you both.
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04-06-2012, 01:00 AM   #7
barkbbdog2
 
Join Date: Apr 2012
Location: Wisconsin
Just had a Seton put in, so far it really has not helped. Also just started Humira. I am praying that it works. This fistula and abscess that started the whole thing, has been the worst pain in my life. Never had such chronic, sharp pain right near the anus. I tell people that it is like a knife sticking out the inside cheek. I don't know about the rest of you, but I am not a big fan of this Chohn's. It is an insidious disease, not enough to kill you, but just enough to make life miserable sometimes.
04-10-2012, 07:23 PM   #8
Mary:)
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Humira worked for my fistula!!!!!
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DX Crohns-2009

Fistula-2010


Humira-Every 2 weeks 40mg

Prednisone drives me nuts!!!!
04-10-2012, 07:32 PM   #9
PsychoJane
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Humira worked very well at first with my fistula too. So it is definitively to be considered. I agree with Cookie on the fact that a week of antibiotic is most likely not enough to heal the fistula. So it could definitively help to have a longer course. Everyone is different, I used to respond very well to cipro/flagyl but not so much anymore so I suppose it can work in certain situation but it is definitively not miraculous and chances are it comes back at some point later. Humira will most likely keep them closed for a certain period of time. The duration of the effectiveness of the humira is different for every patient. One may be good on them for years or it can stop working after a few months. But it is definitively something to consider in order to control fistula. It sounds scary but worth it for the time it last.
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Diagnosed UC 1999 then refractory CD.
Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

Currently taking: Omega-3, D-3, med-free for the time being.
~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

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