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08-03-2015, 10:06 AM   #1
Abbynormal
 
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Fistula advice needed!!

Hi everyone
Just wanted to ask some advice from people who have/ are suffering from fistulas. I've had my fistula that connects from my anus to my bowel for over a year now and still it's very much there and causing a very literal pain in my ass! It bleeds, leaks, I can feel the lump and it itches and hurts. I am on pentasa and azathioprine but it doesn't seem to be doing much. I had a MRI back In May and a doctor said well it hasn't got any worse like that was great news- not really when your still in a lot of pain and it's ruining all your underwear! Just wanted to know what's worked/ working for you? Anything I could use or ask my doctor for?
Thanks, Abby
08-03-2015, 10:38 AM   #2
DJW
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Hi,
I've had lots of fistula problems but it's been years...thankfully.

Many people have success with Remicade.

Check out the fistula subforum.
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08-03-2015, 10:52 AM   #3
Robrich
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Remicade would be your best go to drug.
Flagyl and cipro can work as well
SCD/PALEO type Diet helps.
They can also put in a seton to keep it draining and prevent abscesses which is what causes all the pain.
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DX. Crohns 50 yrs. with fistulas for 20 years until remicade
Meds: MTX,ENTYVIO 9/14' augmentin,
pred. 10mg.
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Past: humira no response after 6 mos., remicade amazing for 10 years then stopped working.
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6mp, Imuran never helped nasty side effects liver problems, caught pneumonia
Asacol, rowasa no response
Flagyl worked well but got PN cipro same.
08-03-2015, 11:03 AM   #4
Abbynormal
 
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Thanks for the replies guys... Is remicade a tablet or injection? The MRI scan showed that there was no blockage and seems to be draining lots on it's own so do t think I need a seton it's just still painful
08-03-2015, 11:19 AM   #5
DJW
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Remicade is an IV infusion.
08-03-2015, 11:31 AM   #6
Abbynormal
 
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And how often do you usually have to have it injected?
08-03-2015, 12:17 PM   #7
Robrich
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Every 8 weeks
08-03-2015, 12:35 PM   #8
Abbynormal
 
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Thanks
Seems I'll have to ask my doctor for that as he's proven to not be very helpful!
08-03-2015, 12:38 PM   #9
DJW
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I'm 8 weeks also.
08-03-2015, 05:40 PM   #10
Kit
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When I got a fistula after trying to deal with an abscess my GI said it was time for surgery to remove that part of the large intestine. (this was where my Crohn's was) This has helped a lot and put me in remission plus taking all my medication. I had issues with leakage as well so I always wore a long feminine pad to catch the leakage.
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08-04-2015, 07:56 PM   #11
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IMHO, large percentage of fistula patients can count on Surgery as their only cure. So if you don't have Crohn's, you may want to learn about the treatment I underwent. It is practiced very successfully in India and the western world is just starting to learn about it.

https://fistulapatient2patient.wordpress.com/
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08-05-2015, 06:46 AM   #12
Abbynormal
 
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Thanks AFS, I have perianal Crohn's disease. My doctor wants to avoid surgery if possible as the fistula hasn't gotten any worse but need to try some new medication as it hasn't gotten any better either.
08-05-2015, 11:35 AM   #13
Robrich
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Abby have you tried antibiotics?
Cipro/Flagyl is the standard but if you can't take those I have had good results with clindamycin and augmentin.
Diet also helps as do probiotics, sitz baths or similar cleansing
I am also taking Entyvio MTX and 10 mg Pred along with topical tacrolimus and topical clindamycin inserted into the rectum
After a year with the seton it now appears to be healed up. Esr down to 10! Scopes all clear
It's been a difficult journey but hopefully when I see my GI next month she will say it is time to remove it.
Never thought I would get this far. I have had PA CROHNS fistula disease on and off for 30 years.
Don't give up or be afraid to keep trying different things. If you try 5 things and each helps 20% you could get it healed by combining them together.
08-05-2015, 11:48 AM   #14
Abbynormal
 
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Thanks for the reply Robrich
When I initially got the fistula I had two separate sets of antibiotics that both failed to improve it. I was already on pentasa for my bowel and I have b12 injections. I then got put on azathioprine which has proved more helpful for my bowel than my fistula. I've tried the baths but not had much relief, luckily I work in a school so got abit of a break now and time to rest it but then as soon as I open my bowels it flares up again. Hopefully when I see my GI he will be able to give me something or suggest a few things. Hope your appointment goes well and you can get your seton removed
08-05-2015, 11:42 PM   #15
Tuff
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I had six fistulas, and I had two GI's tell me to go on Remicade, so I finally did. They stopped draining in 11 days, and closed in a month. That was a year ago. I get my infusions every six weeks now, and have no Crohn's symptoms at all. I'm also on Azathioprine, apparently they work well together.
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Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
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08-06-2015, 03:13 AM   #16
Abbynormal
 
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Wow I couldn't imagine having six fistulas! Glad they healed up for you, I think remicade might be the way to go then
08-06-2015, 07:57 PM   #17
Jay Woodman
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I had six fistulas, and I had two GI's tell me to go on Remicade, so I finally did. They stopped draining in 11 days, and closed in a month. That was a year ago. I get my infusions every six weeks now, and have no Crohn's symptoms at all. I'm also on Azathioprine, apparently they work well together.
Tuff, Interesting that your Fistulas healed with Remicade. I've had other Fistulas heal only after Remicade + Seton Placement. My remaining Fistula would not heal after six months with Remicade & No Seton. I've now a Seton in place & hope that it will eventually close with this combination approach.
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01-02-2016, 07:44 PM   #18
James80
 
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Hi there, I hope everyone gets a chance to read the following: This has brought my fistula symptoms from extremely uncomfortable and unpleasant to almost 0. I make organic virgin coconut oil suppositories by melting it into mini ice cube trays. I use Nutiva organic virgin coconut oil (cold-pressed, not refined, 62% medium chain triglycerides).

I put the suppositories in a jar in the fridge. (Make sure they are small enough). After every BM, I put one inside - make sure it goes past the sphincter. The oil melts through the fistula and the results are amazing.

I used to get recurrent flare ups, where it would be so painful I could barely walk. I would exude puss for days, and would use toilet paper to collect it.

After using coconut oil, I never get flare ups. I haven't had one since using the coconut oil suppositories. My puss has gone from a level of 10 to .25. In other words I have a tiny amount of puss only on some days. I have no pain. It feels completely normal down there.

Note that my fistula has an entry/exit point that does not pass beyond the anus. If the exit point is past the anus, you will likely have coconut oil coming out the other end. But the coconut oil seems to 1. coat the surface of the fistula 2. disinfect it of bacteria. So it keeps it clean and infection free. Coconut oil is antibacterial/antiviral. This was my reasoning when I decided to experiment with it.

I wish you all the best with this. I truly hope it works for all of you! This has been a real mess, but at least the coconut oil has kept me symptom free as long as I use it every time I go to the washroom. Eventually I want to have this fixed, but being in Canada, I've had to wait it out.
07-01-2017, 12:19 PM   #19
mish2575
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Hi there, I hope everyone gets a chance to read the following: This has brought my fistula symptoms from extremely uncomfortable and unpleasant to almost 0. I make organic virgin coconut oil suppositories by melting it into mini ice cube trays. I use Nutiva organic virgin coconut oil (cold-pressed, not refined, 62% medium chain triglycerides).

I put the suppositories in a jar in the fridge. (Make sure they are small enough). After every BM, I put one inside - make sure it goes past the sphincter. The oil melts through the fistula and the results are amazing.

I used to get recurrent flare ups, where it would be so painful I could barely walk. I would exude puss for days, and would use toilet paper to collect it.

After using coconut oil, I never get flare ups. I haven't had one since using the coconut oil suppositories. My puss has gone from a level of 10 to .25. In other words I have a tiny amount of puss only on some days. I have no pain. It feels completely normal down there.

Note that my fistula has an entry/exit point that does not pass beyond the anus. If the exit point is past the anus, you will likely have coconut oil coming out the other end. But the coconut oil seems to 1. coat the surface of the fistula 2. disinfect it of bacteria. So it keeps it clean and infection free. Coconut oil is antibacterial/antiviral. This was my reasoning when I decided to experiment with it.

I wish you all the best with this. I truly hope it works for all of you! This has been a real mess, but at least the coconut oil has kept me symptom free as long as I use it every time I go to the washroom. Eventually I want to have this fixed, but being in Canada, I've had to wait it out.
Still working?
09-05-2017, 03:50 PM   #20
artheta
 
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Still working?
I'm interested too, has anyone else tried anything like this? If the results are as he claims, it's definitely worth investigating, right?
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