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Fistula Treatment

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Jonny

Guest
Hi Mikey thanx for the link it confirms what i already know but perhaps im surprised they didnt put me on azathioprine sooner which im about to try soon as ive had the fistula a few years.
Ive Crohns and a peri anal fistula and take metronidazole and also infliximab.

Pain in the butt fae sure
 
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Kate

Guest
didnt you know that jonny 6mp also works to dry the fistualrs out to
 
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Jonny

Guest
Katers im off soon to see my Physician consultanttoday and i will ask him about that 6mp too...Hope i get a drug that will work for me and im going to try to really improve my diet properly too.

:pillowfight: :shifty-t: :sun: :cookie: :basketball: :emot-dance: :banana:
 
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boneyboy

Guest
Cool article - I've had perianal fistulas since I was about, oh, 21. Backtrack - first fistula at 17, it went away with some cipro - I got lucky, it had opened itself up on its own. Then at 21 it came back, started burrowing. Now I have a permanent seton, and have had one for about 4 years or so (I think, it's a little fuzzy).

I'm on azathioprine, entocort, asacol, and lonox (the god of all anti-poop pills). They try to dump me on flagyl when it gets bad, but that just makes me vomit up a storm. Cipro doesn't seem to do anything for me anymore except make my stomach stage a military coup.

My fav memory of the fistula was when it abcessed. It was the size of a baseball. My dad drove me into the hospital, i laid down in the back seat cuz I couldn't sit. Then they lanced it. The doc said "Oh wow, hold this right there, this one's gonna explode..." haha. It was the oddest sensation I ever had. Painful, yet extremely relieving at the same time. I don't recommend it for a friday afternoon.

I went out drinking with my friends that night, and I didn't have to buy a thing. I think. The night's a little fuzzy. Maybe they mooched off me, who knows. It was a good night.
 
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Jonny

Guest
Well i seen my physicians apprentice and she was very very nice and i felt she listened to me today.I'm going on Azathioprine and it takes up to 3 months for the drug to work.I get my bloods taken every week for the 1st month then twice a month for a month after that i think and eventuallly to once a month if alls still well.
I hope i dont get any bad reactions on this but ive discussed it all with the Doctor and im happy on what i have to do if i have any problems with it.It means now at least the doctors will be monitoring me more regularly and mabye they get get the right drugs sorted to treat me with.((Oh ive had my fistula for 2 years and ive two setons that have been in it for 1 year and a half )).Its still pretty active and it needs alot of attention and swab changing thruout the days and nites.

The remicade i was on has stoped but they are trying to get me back on it.The Consultant physician here cant simply sign a form for say... 5 doses ((infusions))for me as its meant to be just used for extreme circumstances so im told.((Funding problems here)).I have had 5 or 6 remicade infusions and i havent really felt alot of benifits from it so im not top of the list to get it and they keep forgetting about me so ive missed my last dose by 4 weeksish and i will be waiting even longer now or else never to go on remicade again..kinda Sucks...

I was also told that i have to stop smoking!!!!Ive stoped for 3 years but had a lapse recently so !!!!!!! sofar ive gone 1 day without a smoke but i can stop pretty easy it isnt a big deal for me.I dint smoke alot anyways like 5 a day etc max since i lapsed.

I explained to the Doctor about my headaches on Flagyl and that i drank once ina month and i had headaches for about 3 weeks lol..I seen a slight snigger on her face and she said... as i knew ..that your NOT meant to drink on Flagyl at all but i researched it and it says once you stop the dose to leave it for 3 r 4 days before alcohol intake.And i did but still i felt so bad after the nite of drinkies.sOOOOOOOO i hope my fistula behaves and mabye i can get an infusion before my trip to Canada in July.

Although i got my prescription today for AZA and they didnt mention anything to me for getting my bloods checked every week so hey hooo looks like next week i will have to remind them and probs speak to a doctor about it..I wish just once i wouldnt have to chase every single thing around all the time regards my treatment.So hard to get treated here properly grrr..At least thats my view..
 
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kitty

Guest
hey jonny!
-i started aza about a month ago-so long as you take it right after grub you wont feel sickypoo-i've not had any allergic reactions-i have to have my bloods done every week so my ibd nurse wrote out the blood forms and gave me about 30 slips-means i spend less time waiting and just pop along to the path lab every monday morning-maybe you could suggest that to him/her-saving the nhs money like a goo'boy!!.....i hope it works for you-i had my seton in for 4 months and that was quite long enough thank you....
wish you luck!
kitty
x
 
V

Valentina

Guest
Jonny, Glad they finally sound like they are sorting you out with some meds at least. pisses me off the way they have messed up the remicade for you.. you prob have built up antibodies to it by now they way they keep making you go over the 8 weeks between infussions. really hope aza is the drug for you, and you start to feel some relief soon.
as for the smoking.. I would just like to say "I TOLD YOU SO!!" lol could have saved yourself a trip on that one, and just listened to me in the first place, but nooooooo....lol
hope you get all healthy, and your bum is happy for when you come see me!
xox
 
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Kate

Guest
Hey jonny it all sounds good, im on 6mp like i said and thats azas cousin but with less possible side effects.... and so far other then dry skin i dont have any so best of luck with that

kate
 
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Jonny

Guest
Hey all thanks for the replys..and i will be a good boy and try your advise kitty:thumleft:

Have a good weekender all.... I know i will with the football on and Ireland hammering the all blacks this weekend ;)
 
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Kate

Guest
:eek: if you r wrong jonny you will have to eat you hat !!!!!!!!!!!!!
 
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Jonny

Guest
IRELAND ROCK

i WILL EAT MY HAT AND SHOW YOU THE PICTURE IF I CAN ON HERE IF YOUZ WIN.

Wed beat you at soccer ne probs though lol.Were just there to hit that guy who hit ODriscol the last time and get drunk lol

Silly kiwi fruits
 
K

kitty

Guest
omg!jonny-i just seen from your avatar-not only do you have fistulas but you have the dreaded spacemans problem-asteroids!!!!!!

think you ought to get some asteroid cream fer them!


valentina-his bum will be a happy bum in july with a trip to canada!
kitty
x
 
J

Jonny

Guest

LOL Kitty.
Yups Tina take care of my poor bum or the Asteroids will get you
 
oh man, don't even get me started on FIstulas.. hehe :)

I've had 5 surgeries so far on this Fistula, and nothing seems to be working.
My original surgeon put me on a combination of Citpro, and FLagyl, for like 2 years, but never did anything but give me diarrhea and enduced flaires.. I found out later, from another surgeon, thats because antibiotics "throw off" the bodys natural bacteria levels, by killing off both GOOD and BAD bacteria in the body.. Doctors have known that for years, but what they don't know about are probiotics that are used to replenish the body of good bacteria that antibiotics rob the body of...

anyway, I've tried it all, I had a seton in for years and still had to be poaked from the outside just as if I never had a seton placement to start with, so taht didn't work,

they drain the thing about once a week now, otherwise it abscesses into a big baseball and has to be surgically drained with a drain put in for a few weeks afterwards, so to avoid that, I go in to my surgeon about once a week to have the area poaked with a 13 inch long needle with a ball on the end of it that blows air in it to get all the pussy stuff collecting out.. Seton's don't help with that at all..

like yours, it started out being a small tree branch, but has since branched off into several branches.. Normally, he says, they do a FIstulotomy to fix that (cutting off the part of the rectum where the fistula is at) but they can't do that with me because of where the Fistula is located, its right thru the spincter muscle, and if they cut that, that would mean, loss of BM control the rest of my life, meaning adult diapers, which I am way too young for that, I'd rather have a colostomy bag then go thru all that, but my doctor won't do that either, because he says a colostomy won't fix the problem, although I don't see why a temporary colostomy couldn't hurt? you'd think it would have a better chance of closing up if BM wasn't running thru it all the time, wouldn't ya think? but my surgeon doesn't seem to think so...

anyway, this is the surgery I had done most reciently.

Surgesis Anal Fistula Plug

in this procedure, if you read the article, they take living tissue from pigs I guess, and implant it into the FIstula area, using it as a plug... It had an 87% success rate, so my doctor decided to try it.. and so far its not working too well for me, but it is working better then the Seton placement did.. I am thinking what happened, is the plug came out, so I'm thinking if they try it again, but this time keep me in the hospital afterwards for a few days to make sure it doesn't come out before the outside stitching heals up, it might have a better chance of working...

but instead, the doctor sent me right back to work the following day right after surgery, and it wasn't even 2 days later where I started to feel the plug coming out, but once it says in there its supposed to take the place of human skin, which is a really cool idea for these i think..
 
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Jonny

Guest
Thanx for the link bubazoo ..very informative and all the best with your struggles with yours .I hope the fistula plug works for you.They dont want to operate and create a big hole on mine as its too close to the spincter muscle and their not sure how bad it is there so ive had about 5 surgeries on it so far just to get rid of the pus and open it up more.

Hang in there and all the best too you.
 
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